The Life of a 20-Something With Lupus

I can't move my arms or my legs...Part 2

2012-01-22T16:40:00.000-05:00

Part 2 of "I can't move my arms or my legs".

Lazy Saturdays

2012-01-21T19:42:00.000-05:00

I needed this.

This past week was so busy. I had appointments everyday except for Wednesday, though I did go to work on Wednesday. I'm glad that I was able to just to a nice long dialysis run last night and lazy myself around my bedroom today. I slept about 3 additional hours after eating breakfast.

I did not use my neti pot last night, but I did use my Avamys. I was fine overnight, but I woke up with a headache! I used my neti pot again this morning and will use it once again tonight during my bedtime routine.

Before I resume doing nothing, I just have to discuss an irritating moment that occurred earlier in the week during one of my clinic appointments. My appointment was scheduled for 10:45am, so I got to the clinic at 10:30am. Much to my chagrin, 1pm had come and gone and I still had not been called yet. I heard one of the women who worked at the clinic say to someone else that the clinic has booked TWICE as many people as they normally would. WHYYYY?

I finally got called in shortly afterwards, knowing full well that I would probably be in the "smaller" waiting room for at least another 20-30 minutes. As time passed, a woman come into my room. It was a fellow. I have to say..I'm usually pretty good with being okay with doctors who are learning and such, but the last thing I wanted to do was sit there and repeat my life story to someone who already had my life story written on the chart in their hand after I had been sitting there for more than two and a half hours!

She asked me questions and I responded with as few words as possible. When she asked me which medications I was on...I almost lost it. "You don't have it written down there??" I asked. She said "Yes, I just wanted to double check". I just stared at her. She then went on the read what she had written down and I responded with "uh huh"'s.

My actual doctor came in, said what she had to say, and I was done. But, in this clinic, you don't just go to the secretary/receptionist to get your appointment. No. You have to sit down in the waiting room AGAIN, and wait to be called AGAIN for your appointment. In the past, what I've done is simply ask for my hospital card back and ask for the appointment to be sent to me in the mail. When I got to the desk, the volunteer there told me that my chart had not come out yet. When I asked when it would come out, she said "i dunno...sorry" and resumed doing whatever she was doing. I told her that I wanted my card back so I could leave and if they could please send me my next appointment in the mail. "Your chart hasn't come out yet." Another receptionist pointed to another reception desk that was about 15 feet away. "Maybe your chart is over there with that receptionist". So I went "over there" where the other receptionist was. As not to interrupt her, I stood there, waiting for her to look up. Clearly ignoring me, I said excuse me. She looked up and said "yes?" I asked her if she had my chart. She asked for my name which I gave to her. "No I don't have it". I went back over to where the other receptionist desk was and waited.

I called my father to let him know that my appointment was finished and I was just waiting for my hospital card since he would be the one picking me up. After about 18-20 minutes, I went back to the receptionist's desk. At the same moment that I got there, the 3 receptionists that were there started laughing as something; perhaps one of them told a joke. A different volunteer receptionist was there this time. I asked her if my chart had come out yet. She asked me my name so I told her. This volunteer asked one of the receptionists, who was still laughing, if my chart had come out. Then that receptionist looked at me and says (while waiving her hand at me in a "just wait a minute" fashion): "I have it right here! I'm doing it right now! We're just laughing to try can calm down the stress!!!"

Excuse me? Is this lady talking to me?? She obviously thought that I had come up strictly because I saw them laughing and obviously that means that I felt like they should be doing less laughing and more working??

"Did I say that you weren't allowed to laugh? My question was: has my chart come out yet. It requires a simple YES or NO response". The receptionist just looked at me briefly and looked down while resuming hacking away at her keyboard. I hope my response to her let her know that she was out of line.

About a minute later she called me over and returned my hospital card and a sheet with my appointment on it (if they had been listening and communicating properly, they would have known that I wanted my appointment MAILED to me and I did NOT want to wait 25 minutes for it to be handed to me).

Man was I ever angry. Sometimes I feel like people think they can talk to me in any old rude way because I look like a child. Yes, I look young, but not only am I NOT a child and I am NOT an idiot. How very rude of that receptionist to assume that I was upset because they were laughing and therefore speaking to me in a rude and condescending fashion. Also, this clinic was a hematology clinic full of cancer patients. How insensitive is it for her to essentially YELL at me, telling me that they're laughing in an attempt to relieve stress? Yes, that's great, and I have nothing against relieving stress. But if I'm at that desk waiting for an appointment, can it not be assumed that I might be a cancer patient? Did you ever consider that I may be under a certain amount of stress as well and the last thing I need or want it so be yelled at by the person who is making my next appointment? Even if I don't have cancer...I'm still obviously there because I have an illness or health problem of some sort. That's stressful as well...so don't raise your voice at ME, lady.

Ok,

I can't move my arms or my legs...

2012-01-20T21:41:00.000-05:00

I finally recorded a vlog about the time I was unable to move my arms or legs. This is part 1 of 2. Part 2 will be uploaded shortly.

Raw Lunch @ Belmonte Raw

2012-01-18T18:30:00.004-05:00

After finishing work today, I checked my cell phone to see a message from my friend Mo asking me if I wanted to check out this raw food spot downtown called Belmonte Raw. Mo and I had discussed this a few days earlier. I expressed my interest in perhaps going on a raw diet/cleanse for a few days (3-5 days or so). Luckily we were both available, so we headed down there.

After successfully navigating the streets downtown, we were able to find the spot. Mo was luckily enough to find a great parking spot on the street right in front of the restaurant.

When we got in, we took a look at the two menus. One had the two entrees of the day, and the other had a list of the different raw beverage offerings.

Feeling unsure, Mo and I asked our our lovely and warm server, Saidah. She recommended that we go for the raw burrito.

Man was I ever nervous! This is the first time that I've ever tried something like this and I was pretty anxious. I was pretty hungry and was just hoping that it would not only taste good...but would be filling and satisfying as well.

After a few minutes, our meals arrived. I liked what I saw.

Our delicious meal came out and it was presented beautifully. The burrito is wrapped in a collard leaf with chips on the side. I forget what is in the chips, but what I do know is that they were created with the help of a food dehydrator.

Our sides included a raw guacamole (left), "sour cream" which I believe was actually comprised of cashews (centre), and tomatoes (right).

Yum, let's dig in!

Mo and I gave each other "the countdown" before we took our first bites. Ok...three...two...one...*chomp*!"

After our first bites, Mo and I both went "...mmm!" in an almost "I'm shocked at how good this tastes!" kind of way. It was quite delicious. I'm so used to pretty much eating meat in most of my meals, but in this case, the meat was not missed. The meat was replaced with spiced sunflower. The jicama was just delicious with an apple-y taste. It was just great. The rest of the ingredients are shown above in the photo I took of the menu. There was plenty of filtered water with lemon which was also delicious.

Mo liked her raw burrito too :)

Now, the question is...did we finish our meals?

We sure did! :)

We both definitely had a preference when it came to the dips/toppings. We both enjoyed the cashew sour cream (interesting..as I love sour cream with tortilla chips in real life). I've never really been a fan of tomatoes. In fact, I requested that my burrito be made without tomatoes, which it was.

After we had finished eating, Saidah asked us if we wanted to try some dessert. Sure, why not? Mo got the peanut butter chocolate while I got the raspberry chocolate.

This is my chocolate raspberry dessert.

Mo's dessert is at the top of the pic. The desserts look pretty much the same from the outside. It was also delicious. My dessert looked wonderful on the inside!

Did we enjoy our desserts?

LOL.

Mo also got a few drinks to go as well as a salad. I should have taken pictures of them...but I didn't. Next time! :)

Eating at Belmonte Raw was a new, but positive experience. I cannot remember how much the dessert costs, but the burritos cost $14.95 each. A little pricey, but at the same time, when we go to restaurants and order chicken strips with fries or over-sized pasta dishes...we never complain about prices for THOSE dishes...

Saidah really helped us decide on our meals. She was great! I look forward to coming back sometime soon.

Lovin' my Neti Pot!

2012-01-18T17:25:00.000-05:00

Back in early 2010, I came down with a terrible sinus infection. My whole head hurt badly and my ears were both blocked. They did not both block at the same time (maybe within a few days of each other). It's a bit of a long story, but the link to that story is above. In the end, it turns out that I had a severe sinus infection. I was given ear drops and oral antibiotics.

By the end of 2010 when winter came around again, I ended up with bad headaches. I was sent to see an ENT who prescribed Avamys, a nasal spray. After using it for a few days, my pain has subsided.

The following winter (this winter), the headaches came back. I have to just conclude that the sinus infection has somehow affected my sinuses permanently and these headaches will continue to come back every time the weather changes. I refilled the prescription for the avamys, but then I remembered the Neti Pot I purchased previous to the first time I used the Avamys. I did not end up using it as the Avamys did the trick. But...wouldn't it be nice if there was a more natural way of helping these headaches? Taking Tylenol every 5 seconds simply wasn't doing the trick. So, I pulled out my Neti Pot and decided to give it a go.

I gotta admit- I was scared to use the Avamys as I was nervous to have fluid shot up my nose. I felt like it would hurt or something. Now...I plan on guiding a continuous stream of fluid through one nostril and out of the other? I must be crazy! Well..all I can do is try!

So I got the box out and read the instructions. I would need distilled water, which I already have on hand as I use it in my hair steamer.

After cleaning the Neti Pot, I poured the distilled water into the pot up to the fill line. As per the instructions, I put the Neti Pot into the microwave for a total of 25 seconds (in 10 second intervals) to warm the water up.

The box also had these little sachets in it which is to be emptied into the pot after the distilled water in the pot has been warmed.

So I did as instructed, emptied the packet into the pot, placed the lid on, and gently swished it around to mix.

I had to brace myself for several seconds before I built up the nerve to put the end in my nose, opened my mouth slightly so I could breath through my nose, and watched in amazement as the water flowed out of my other nostril. No discomfort...actually kinda soothing (I know, this picture is weird and perhaps creepy, but I'm trying to document this as accurately as possible! LOL)

I've used my Neti Pot 4 times so far. I haven't used it yet today but I will shortly. So far, it's been helping with my headaches. If you want to try it too, I bought mine at Shopper's Drug Mart, but I've seen them at Walmart too. Just follow the instructions; don't use regular tap water in it...make sure it's distilled.

Now excuse me while I go and flush my sinuses! :)

So busy

2012-01-14T12:26:00.000-05:00

I have so many things/appointments going on this month!

I am first of all happy to announce that I wrote what I hope was my final exam before I graduate from college! Woo hoo! Now, I must say that the exam was quite difficult (microeconomics, or economics in general, simply isn't my subject) so I hope I passed. I need to achieve at least 60% in the course. The exam is worth 50% of my mark and the assignments are also worth 50%. I did quite well on the 5 assignments, achieving 95%, 85%, 93%, 95% and 92%. So, I went into the exam with a 92%, or 46 out of 50. I actually haven't "crunched" the numbers until right now. I suppose I would have really needed to mess up badly on that exam to at least not pass with a 60%. To be honest, until right now, I initially thought that the assignments were worth 40% and the exam worth 60%. I actually feel a lot better about the fact that the exam and the assignments are weighted equally.

(Assuming I pass, that is...hehe) Right now, I am just happy to be able to say that I have succeeded where this particular matter (college) is concerned. That is not to say that I may not eventually go back to school (university) to get my degree. I had an appointment with my nephrologist on Thursday and he actually encouraged me to do so. Blegh! I need a break from school!

Next, I have so many appointments this week. X-rays, ultrasounds, blood work, oncology, hematology, nephrology (two different ones)..so exhausting! But I still hope to find time to continue on with my vlog "mini-series). The next video is supposed to be about the time I lost my ability to walk/use my arms. That was a terrible time :(

Hope to record that soon! I'm happy to have found some time (the last two days) to just lounge around and do nothing, even with all I have to do this month. I'm glad school was finished already (first week of Jan) so
I didn't have to worry about that...!

Houndstooth Infinity Scarf ftw!

2012-01-12T00:35:00.001-05:00

I was browsing around on etsy a few weeks ago looking for a new scarf. I came across a seller who was selling a nice houndstooth infinity scarf! When I saw it, I couldn't resist...so I bought it.

What's even better is this: before I got the scarf in the mail, the seller messaged me and thanked me for my purchase. She also told me that because I bought this scarf, another scarf would be donated to someone in need! I had no idea that this was the case when I made the purchase. In the email, the seller also asked me to take a picture of myself in the scarf as she wanted to compile a blog post or something with everyone who made a purchase of one of her scarves. I was excited to get it.

The scarf would be coming from the States. It came rather quickly..it probably took a week and a half. When I took it out of the envelope that it was packaged in, this is what I saw!

How sweet!

So the scarf is gorgeous and I'm glad I got it. I'm even happier that a donation will be made to someone else who needs a scarf.

Here's the link for where I bought the scarf, though my particular scarf does not seem to be available anymore :(

http://www.etsy.com/shop/juliemarieshop

Operation: Venofer

2012-01-11T20:30:00.001-05:00

As per doctor's orders, I am going to administer 5 doses of venofer to myself: 1 for the next 5 dialysis runs. Apparently my iron stores are low. My hemoglobin is 103 (or 10.3) which is not bad for me, but my iron stores are on a downward spiral, and if I don't act fast with these venofer injections, my hemoglobin may begin to fall.

So, what's venofer again? Below is some cut and paste from drugs.com:

Venofer contains iron sucrose, a form of the mineral iron. Iron is important for many functions in the body, especially for the transport of oxygen in the blood.

Venofer is used to treat iron deficiency anemia in people with kidney disease. Venofer is usually given with another medication to promote the growth of red blood cells (such as Aranesp, Epogen, or Procrit).

Here is a picture of the vial:

So I draw it into my syringe while I'm setting up my dialysis machine:

I tape it to my dialysis machine's movable/adjustable screen so that I'll remember to use it!

Safety first! Gotta make sure to wipe the port before I stick my needle into the dialysis line to administer this stuff.

I only push 1cc of venofer per minute. If I push the whole thing quickly/at once, it could drop my blood pressure...and I definitely do not want or need to drop my pressure while I'm doing home hemo!

I checked my blood pressure immediately after administering the venofer to make sure my blood pressure isn't too low before I turn the lights off and go to bed. My BP is not low. Perhaps maybe a little high! Heart rate is good though. So I'll continue to do this for the next little while until I've done my 5 doses...then I'll wait for further instruction, probably after my next monthly blood work is brought in.

Canada Goose Trillium Jacket Review

2012-01-09T18:35:00.000-05:00

I decided to do a review of my new Canada Goose Trillium Jacket. It has really become my best friend on the colder days (not that we've had that many this season..!) But as someone who is anemic and gets cold easily...I'm quite pleased with the jacket! For good measure, I also threw in a "Canada Goose vs. TNA Aritzia Parka" comparison as well.

Enjoy!

Finally! Relief for my blemish/Acne prone skin!

2012-01-06T23:31:00.001-05:00

I didn't always have acne. My skin used to be quite blemish free. But after I was diagnosed with SLE...I don't know if it was the medications or what...but my skin exploded. I had blemishes everywhere. I'd wear tons of makeup in an attempt to cover it up...but little did I know that this was actually making the problem WORSE, especially since I finally figured out that the makeup I was using was simply making my skin worse.

I was one of those people who tried everything on the market. I tried proactiv, murad, clean and clear, obaji...the list is essentially endless. My skin simply was not responding.

I finally found something that made my acne go away, but there was a problem. It made my skin look dull and lifeless. I thought to myself...oh well, my skin may look dull and lifeless, but at least I don't have bumps on my face. I can easily cover up the dullness with makeup! But the last straw where that product was concerned was when I accidentally got some of this product on my pink t-shirt...and the spot on my t-shirt where the product landed changed colour...like bleach! If this thing can bleach my clothes..what is it doing to my skin?? (It was benzoyl peroxide, by the way).

I decided to take a more natural approach. I tried OCM (the oil cleansing method). You can read about the oil cleansing method HERE. I really liked the idea of OCM but it did more harm for me than good. It caused several little bumps to pop up on my forehead, an area that was usually not heavily affected by blemishes. I read that this could happen and that there was a "purging" stage that I would have to get passed...but I believe that I gave it a fair enough chance. I had to find a way to reverse the damage that had been done.

After doing a lot of research which included a great deal of trial and error, I finally put together my own routine which seems to work quite well for me.

First, I wash my face both morning and night with African Black Soap. There are a lot of soaps out there claiming to be African black soap, but you want to get something that is 100% black soap. I personally got mine at Black Onyx World. The soap from Black Onyx world comes in a big bar, so your best bet will be to break it off into pieces (perhaps just slightly smaller than the size pictured below. When the bar I bought from Black onyx world is finished, I will use the black soap that my parents bought me when they went to Nigeria.
In the morning, I would just dry my face and put a few drops of grapeseed oil in the palm of my hand along with some Solar protective moisturizer SPF 30+ (bonus: This sunscreen does NOT TURN YOUR WHOLE FACE WHITE when you put it on!!!)

African Black Soap

In the evening, I make a mask with the following ingredients:

Lemon Juice (half a teaspoon)

Raw Honey (1 tablespoon)

Rosenary Oil (one drop)

Vitamin E oil (2 drops)

Brown sugar (half a tablespoon)

I keep a set of measuring spoons in my washroom to use just for my face.

When everything is combined, it'll look like this.

I forgot to take a picture before I slathered it all over my face, but you get the idea!

DIRECTIONS:
1. Put the brown sugar and the honey into a small container and mix it well until combined.
2. After it has been combined, add the rosemary oil, vitamin e oil, and the lemon juice.
3. Mix until combined.
4. Apply to face and massage it in.
5. Look as pretty as possible until you are ready to wash it off!

After it has been on your face for a while, rinse it off with warm water. After it is all washed off, give your face a quick rinse with cold water to close up those pores. I then moisturize with a few drops of grapeseed oil and Cerave lotion.

Why these ingredients?

Brown sugar: works as an exfoliant in this recipe
Vitamin e: some say that it is an anti-oxidant and good for acne scarring
raw honey: natural antiseptic (anti-bacterial), soothes and heals your skin while keeping it moisturized.
rosemary essential oil: astringent
lemon juice: good for lightening dark spots, rich in alpha hydroxys-great for exfoliating skin
black soap: reduced my outbreaks, kills bacteria, does a great job of removing makeup (and it is inexpensive!)

This routine has done wonders for my skin. (Yes, I have makeup on in this pic, but no amount of makeup could make my skin look like this based on the pictures above...!)

Now, for my foundation, I use mineral foundation by Valana Minerals. This makeup not only matches my skin colour perfectly, but it does not break me out because it is made of all natural ingredients. I am wearing it in the above picture. Another benefit is the fact that I do not get that "grey-ish" colour that I would sometimes get from the flash of cameras which would make my skin colour look "off". I bought samples first before figuring out that I am "Gentle Amber" during non-sunny months and a mix of Gentle Amber and "Red Amber" in the summer time. You only need a little bit and it has lasted me a long time.

Where do I buy all this stuff?
Organic Honey, Rosemary Essential Oil, Vitamin E oil, and grapeseed oil can all be purchased online at vitacost.com. It doesn't really matter which specific brand you buy (i.e. you don't have to buy EXACTLY what is pictured), just as long as you buy the above things. Except, of course, the Solar Protective Moisturizer-that's a very specific name LOL.

If you would like $10 off your first purchase at http://www.vitacost.com, use the link HERE within 60 days of the date of this post

The above is a referral link; it will save you $10 and get you on your way to hopefully find something that works for you as well as it worked for me.

For my Canadian friends, the Cerave can be purchased and delivered for free to your home from Well.ca. If you spend over $40 on other stuff, you can get $10 off of this as well! Just use the following coupon code:

mizflow

For the African Black Soap, you can purchase that at Black Onyx World Online, or your local African store.

For the Valana minerals makeup, you can purchase some samples and check it out by clicking HERE.

I hope that this post helped you out a bit and will make you think a bit differently when it comes to taking care of your acne prone skin and the scarring/hyper-pigmentation that comes along with it. What I like about the products above is that they can be used for other things. Rosemary smells great and I use it in my hair steamer when I steam my hair. I use my grapeseed oil in addition to regular body lotion on my skin after I take a shower, etc. I think it is all worth it. And, the icing on the cake is the fact that most of the above products are organic, raw, natural, etc. Even the Solar sunscreen is a much more natural sunscreen than others on the market...and it does NOT make your skin white!

All of the items mentioned in this blog post were purchased by me with my own money and I was not asked or approached to endorse anything. The above routine worked quite well for me. After that benzoyl peroxide bleaching my shirt fiasco, I asked myself..how can I cure/fix/get ride of my acne without chemicals? I think I may have found the ticket!

Extra bonus: the hypergranulotic dyscornification that my dermatologist diagnosed me with seems to be becoming less and less noticeable! Hurrah for the fading away of annoying white spots!!

Definitely post any questions you may have below so I can try and answer any questions you may have!

Protective Style- Hair Bun!

2012-01-03T16:27:00.000-05:00

A good friend of mine that I've known since grade school made a great youtube video on how to put your "natural hair" into a nice, neat bun! Check her out! xo

Happy New Year!

2012-01-02T18:04:00.000-05:00

Happy New Year!

This year's festivities were low key but fun. Myself along with a number of my friends spent the evening at a friend's house for a potluck dinner. We had roast beef, roast ham, roasted potatoes and veggies, salad, etc. I made stuffed fried wontons.

The following might sound weird, but it was delicious:

What you need:

-cream cheese

-chopped green onions

-imitation crab meat, chopped finely

-salt and pepper to taste

-wonton wrappers

Mix the first four ingredients together. the main ingredient is the cream cheese, so the other ingredients (the imitation crab and the green onions) are just a compliment. After the mixture is prepared, you put a small amount into the centre of a wonton. Dip your finger in a bowl of water and apply it to 2 of four corners of the wonton (two touching corners). Fold the non-wet side of the wonton over to the wet corner of the wonton to create a triangle. Press the corners down and push out any air pockets. Deep fry on low heat in a fry pan that has been preheated with vegetable oil. It only takes a very short time for the wonton to brown. Flip the wonton over so it can cook on the other side. When it is done, remove it from the oil and place it on a plate lined with paper towel to drain some of the excess oil. Serve with plum sauce. It's delicious!

Anyhow, the night consisted of playing a board game, playing Wii, chatting, eating, and catching up. We had a great time and dinner was wonderful. I love the easy moments like this. Here are just a few of the pictures from Saturday night. I hope you all enjoyed your NYE as well!

Yay Christmas!

2011-12-30T15:45:00.001-05:00

I know, Christmas has passed and it is almost the new year! But I wanted to at least write up a quick post about my Christmas.

It was great. The family got together and my Mom cooked a great meal. We had lasagna, chicken wings, vegetables, etc. All very delicious!

A few weeks prior to Christmas, I bought a new jacket. I sold my previous jacket on kijiji so that I could put the proceeds towards my new jacket.

Here I am in my old jacket. These are pictures that I took specifically for kijiji:

Well, I didn't actually put that second pic up on kijiji, but you get the idea :P The above jacket is the ever so popular tna jacket. It costs about $350 brand new, but the one I ended up selling was purchased used as well. It is a great jacket, but it is a medium and is too big for me. It has always been too big for me, so I figured I would just get rid of it and buy myself a new one. It doesn't look particularly big on me in the pictures, especially in the first one, but that's because I have my hands in my pockets and am "pulling" the jacket back so that it is more snug against my body.

I like my jackets slightly "roomy" in case I want to wear a heavy sweater underneath. I used to have a brand new tna jacket, but, as I may have mentioned in a post last winter, it, along with 2 of my other jackets (a bomber-style Danier leather jacket and a wool tna jacket) all went missing, likely to the Goodwill by accident of my Pops. *sad face*

So I bought myself a new jacket, a (size small) Canada Goose trillium jacket. I plan to record a review of the jacket and put it up on my channel soon! I ideally wanted a brown or navy one, but ended up getting it in black as it was more readily available in size small, the size that I wanted. In retrospect, if I waited about two weeks, I would have found it in brown. However there really wasn't any way of me knowing whether or not the jacket would become available, and these jackets are in high demand. I'm quite happy with my black goose jacket now that I have it. It is incredibly warm and really nice. A friend of mine has this jacket in a different colour but in the same size. She even suggested that I size down at it is a naturally roomy jacket, but I opted against that. I have a bra size of 34D, and I was afraid that I would "suffocate" my chest if I got it too small! The small is just fine.

Now the reason I brought that up is because I asked my sister to give me money instead of giving me a Christmas gift because the Canada Goose jacket was rather pricey. I already knew that my Mom and Dad would give me money.

So, as expected, both of my parents got me cards with money in it. What I found particularly funny was the fact that my sister gave me some cash and put it in the following envelope with the slogan for Scotiabank on it

I can always rely on my brother to get me a nice pair of sneakers for Christmas. Last year he bought me a nice black and pink pair of Nikes that fetched me plenty of compliments.

This year, I got a new pair of Nikes! I really like them. I especially love the bottom of the shoes! The bottom of one shoe says "Just Do It", while the bottom of the other shoe says "Nike". Love them!

My favourite hair braider also came to join us in the festivities. It was a great time :)

I hope you all had a wonderful Christmas/holiday season. Up next: New Years! :)

P.S. Here's a picture my Dad took of my legs/feet when I wasn't paying attention! Silly!

Merry Christmas/Happy Holidays!

2011-12-28T15:36:00.002-05:00

Just wanted to take a quick moment and say Merry Christmas/Happy Holidays to everyone! Sorry I'm late!

I'll post a more informative Christmas post later! :)

Hip replacement scar: 4 Months Later

2011-12-21T16:17:00.000-05:00

I thought I would share my hip replacement scar again as it looks today. It has been about 4 months since my surgery :)

Operation: Get me a kidney= back on!

2011-12-18T18:20:00.000-05:00

I have a lot to be thankful for as the holiday season draws near.

The other day my transplant coordinator called me and let me know that the group of doctors (nephrologists) got together and finally discussed my case in regards to kidney transplant.

There was a lot for them to talk about and consider, including whether or not it was realistic and safe for me to go through with the transplant since this new smoldering myeloma diagnosis had thrown a wrench into my plans. The doctors required additional information from my oncologist. After much back and forth, they finally got all of the information they required in order to re-visit my case.

I'm happy to say that they have agreed and approved our plans to move forward with the kidney transplant. I'm really happy about that. There has always been SOMETHING that has blocked me from getting this transplant and I'm glad that we are moving in the right direction.

The next move will be for me to have an appointment with the transplant nephrologist as I have not seen him in a couple of years. Yup, I should have had a kidney a number of years ago if not for things continuously throwing these plans off track. Hopefully THIS time will be the right time. I may not get an appointment until January or so, but that's ok...let's just get this transplant done!

Another thing that I'm happy about is the fact that this one course that I am taking will soon be finished. I have one more assignment to turn in (which I will begin to work on after I finish this blog post), then I have my final exam in the first few days of January. After that, I'll finally be finished school. All of the hours of studying for tests, exams, certification exams, doing assignments while juggling to maintain a proper home dialysis schedule...all of that will have finally paid off.

If it hadn't been for this transplant stuff, I'd have started applying for HR jobs within the company that I work for already. My resume is on point...all I need to do is hit "submit!" But i know the second I do that..I'll go through all sorts of interview processes and such...and within my first week of work is when the transplant will be scheduled!! I'm trying to do what I feel is the "right" thing and wait before I start applying for HR jobs..but there is also something in me that's just like..."Live your life!" We'll see. I feel like I'm getting close to transplant. If any delays should occur for ANY reason, I'm just going to apply for jobs. I thought I was going to receive a transplant years ago. Imagine if I put my life on hold all this time just waiting for it..?

10 Answers to 10 Questions!

2011-12-11T12:46:00.000-05:00

Answers to the 'randomest' things you've ever wanted to know about Miz Flow!

Relationships and Chronic Illness

2011-12-10T20:09:00.000-05:00

Check out my vlog on relationships/dating and chronic illness and tell me what your opinion is on the subject!

Food with Friends

2011-12-07T22:06:00.002-05:00

I haven't been ignoring my blog...I swear. I really just haven't had much to say.

My routine has been pretty simple for the past few weeks. I've been going to work, relaxing at home, doing homework, etc.

Last week Monday was a pretty cool day. I took the bus to work because my father, who would normally drive me to work, was out of the country. So i took the bus, got off at my stop, and walked towards my building. When I went through the doors and was in the lobby before the security doors, I saw my old childhood/neighborhood friend Kiko. I knew he worked for the same company I worked at, but his location used to be downtown. He had told me previously that his company had moved from downtown to my building. I still hadn't seen him in a few years, and it was just very coincidental and nice that I saw him in the lobby/security area. I only managed to catch him there because he had forgotten his security pass and couldn't go any further without getting someone to sign him in.

I'm glad I caught him in the lobby, as we went for lunch together along with one of his co-workers to a place nearby. It was a fried chicken place-the authentic kind. Rice and peas..all that. Delicious.

Anyhow..to be honest, I haven't much to say yet. Still waiting on transplant stuff. Just wanted to touch base :)

Busy!

2011-11-28T19:17:00.000-05:00

I know I haven't posted in a little while. I'm just starting to try and get back to normal. I've resumed going back to work for a few hours a week just to get my "feet wet". It's really great. I miss my co-workers. What I really miss is that feeling of being productive..you know? That feeling of going out and doing your job and knowing that you did something productive that day. I miss that. I'm resisting the urge to just jump in with both feet and take too much on all at once. It's really difficult for me.

In other news, I'm hoping that i'm slowly but surely inching closer and closer to transplant. My oncologist has finally spoken to the transplant nephrologists about my case. The transplant neprologists will get together later this week and discuss my case altogether. This transplant has eluded me for too long..let's get on with it! :)

Up early for Nothing

2011-11-18T18:26:00.000-05:00

Today was an early morning. I woke up at 6:15 today so I could get to the hospital early.

My father was going out of town today, so he offered to drive me to the hospital for my appointment but I would need to take the bus home. This worked out well for me since it was my plan to go and visit a friend in the dialysis unit.

After visiting with my friend, I went up to my appointment. Much to my chagrin, the doctor's secretary told me that my appointment wasn't that day..it was the following Thursday. The doctor wasn't even there! What a terrible waste of time!

I went downstairs to the dialysis unit to check with the secretary there. She showed me the email: it said the appointment was today. Meh! Not impressed! (Georges St. Pierre voice).

The trip to the hospital wasn't a complete loss...I got to hang out with my friend while she dialyzed and I got to catch up with all of the nurses and hemo assistants that I haven't seen for a while.

Long Day

2011-11-15T20:24:00.000-05:00

Today was a long and eventful day.

My day started out with a trip to my oncolgist. I had to take the bus and subway today as I did not have a ride. My hip hurt a little, and my knee hurt a little bit more, but it wasn't bad. My first stop was to the blood lab to get some blood work done prior to seeing the doctor. I waited for about 30 minutes for my number to be called. When my number was called, I got up and collected my purse and a bag I was holding. When I turned around, I saw another woman, who I had seen come in way after me, going towards the blood tech who had called the number out. She was clearly trying to pull a "fast one" and take my spot as she did not see me picking up my stuff to walk over to the blood tech. When he saw the woman walking towards him, he looked at my hospital card and said my name. That's when the woman knew "the jig was up". Nice try!

Whenever I have to go to the hospital for an appointment, I usually treat myself to Second Cup or Starbucks, and that was no different today. I went to get my Starbucks and a quick bite to eat. I knew I wouldn't have to rush that much. I finally got my blood taken at around 10:00am, and my appointment time was 10:15. This clinic usually runs slow...not to mention the time it might take for my blood work to come back.

So after I got my Starbucks and snack from Tim Hortons, I went to the hospital's pharmacy to order my aranesp so that it would be ready for pick up by the time my appointment was done.

I went to my appointment at the hospital across the street. I sat down, drank my soy vanilla latte, ate my donut, and read the paper. I knew I'd be waiting long so I might as well make myself comfortable. Much to my surprise, they called me in at around 10:45am. Not a long wait at all.

When I saw the doctor, everything was fine. My hemoglobin was up to 111 (or 11.1) which is great, since it was 95 (or 9.5) two weeks ago.

After my appointment, I emailed my transplant coordinator Julie from my blackberry so we could meet up and chat. We chatted for about an hour. It's always great chatting with her.

After this, I decided to get on the shuttle bus and head to twh, as it's closer to home. When I got there and headed for the bus stop, I got outside just in time to see two women, and one of them looked like she just hit the ground! The first one was on the phone. I was quite far away and I cannot run, so I walked towards them. I asked the lady on the phone if everything was ok. She smiled and said thank you. I started to walk away...but I (obviously) didn't believe her when she said everything was ok. So I came back and asked her if she needed somebody called. She said yes. So I headed inside as did a security officer. There were some doctors and other medical staffers in the food court, so we called them. They dropped/abandoned their meals and ran outside. One of them grabbed an oxygen tank and mask from who know's where and ran outside also. In total, there were about 15 medical professionals who came outside. As they began attending to the young lady on the ground (who I now assume is the other lady's daughter) I felt much better. As the conversation continued, it became apparent that the young lady on the ground had some medical problems as well as perhaps developmental problems, and this was not an isolated incident-she had had a seizure.

Just then, the streetcar came. I headed for the streetcar, especially since the medical staff was now with the young lady. I did not want the streetcar to leave without me, so I asked another gentleman who was in front of me to hold the streetcar for me, which he did. Very nice! He also offered me his seat. Double nice! I got to the subway, took my train to my nearest station, then headed to ground level to take another bus home.

So that was my day...aside from being pushed around by a man at ground level. The bus was coming so he thought it would be a good idea to try and shove me out of the way so that he and his wife could get on the bus before me. What the what?? I shoved him back with my elbow and did not allow him to get in front of me. He kind of squeezed his way to the front door of the bus, which meant he was going to get on the bus before me if the bus stopped in it's usual spot. Luckily for me, the bus driver opened the back door as there was a ttc employee at the back of the bus waiting to see our passes in order to let us in. So I ended up getting a seat anyways. Some people!

Well, that was my day. Crazy, huh?

Up for tomorrow-Work telephone conference call and a dialysis tech will visit my house for a special disinfection of my machine.

Random Bruise

2011-11-13T23:30:00.001-05:00

Ouch!

Sleepless Nights

2011-11-13T01:04:00.000-05:00

Sleepless nights. I've had a lot of those lately.

I just have so many things going through my head that I often find it difficult to sleep. The end of my college career is drawing near, which means it'll be time to start job searching. In fact, as I wait to go back to work now that my hip is getting better, I've been looking at the job postings at my work...basically just to see what's out there.

I'm afraid that I won't be able to keep up with a full time job. I'm afraid that I'll get too tired, or I'll get sick..or the chore of doing dialysis all the time coupled with going to work will zap the energy out of me. I'm quite lucky in that I have a wonderful and supportive family who helps me out a lot. But eventually..I imagine that I'm going to have to get to a point where I'm self sufficient. That scares me.

But, my thoughts that have been causing me these sleepless nights go even deeper than just my future career. First and foremost...it's my health. The transplant team is still in talks with my oncologist in regards to my potential transplant. The transplant nephrologist has emailed my oncologist a couple of times but she has not answered him yet. I imagine she is quite backlogged as she was away for a week or two. Luckily I'm seeing her this week for a follow up appointment so I'll be able to talk to her then.

I guess one of the main concerns the transplant team has is the potential repercussions of the transplant medication I'll have to take after I receive a kidney. Some of those medications could possibly trigger or "activate" my currently "smoldering" myeloma. If it does...then that's a whole new set of problems that I'd have to deal with.

So what do I do? Forget about a transplant altogether because of the slightly increased risk of triggering these myeloma symptoms? If I do that...I'm just being honest here...I'd be pretty miserable. Don't get me wrong- in spite of the work that goes into setting up, stripping, and maintaining a dialysis machine, it's much better to me than the alternative, which is going to the hospital for treatment. I don't think I can do that anymore. At the same time, I feel like I have a ball and chain attached to my ankle.

I've missed out on a lot in terms of vacationing with friends and such because of dialysis. The last thing I want to do is inconvenience my friends by having them drive me to dialysis units in different countries. What's more...It can be scary going to outside dialysis units. Every unit has their own way of doing things...and their ways may not be something that I'm used to. And what's more...whenever I do "in-centre" dialysis, I'm pretty drained afterwards. I'd have to go back to the hotel, eat, and take a nap. I don't want to put that on anyone. Not to mention..dialysis in a different country is pretty expensive. When I went to Florida once...I got a "deal". I paid $300 per dialysis session. The actual cost was more than $600 USD per dialysis session. OHIP only reimburses $210 CAD. It's a huge cost to bare in my opinion.

In spite of the risk...having a kidney transplant is something that I want. I've young...and I kind of feel like I've lost a part of me in terms of the carefree person I used to be. Bike riding for hours on end throughout the city with my brother and his friends or me and my friends...as I mentioned before, hitting up vacation spots...I've never been able to experience one of those "let's just go to Montreal for the weekend" or "let's go to the States for the weekend to shop" adventures...

I just want everything to be..."right", you know? It's been so long that I'm not even sure exactly what that is. All I know is that my "right" does not include being hooked up to a dialysis machine for 40 hours a week.

I don't even know if what I'm writing is making sense anymore, so I think I'm going to lie down and try to get some shut eye. I hope I can.

Notice anything new about my blog?

2011-11-10T14:14:00.000-05:00

Yes, my new blog design is finally complete. I'm pretty happy with the results. There are still a couple of "tweaks" here and there that need to be done, but other than that, it's done. What do you think?

Free from Physio?

2011-11-10T14:11:00.000-05:00

It's been a short while since I updated! I've had a nagging stomach ache for about the last week that I just can't seem to shake! I went to physiotherapy this morning. My mother dropped me off and picked me up too. After physiotherapy, we went to Walmart. Much to my delight, peppermint tea was on sale. I've been told before that Peppermint tea is good for an upset stomach...so I'll give it a try.

Speaking of Physiotherapy, I saw my ortho surgeon last week. He assessed me and said that I do not need physiotherapy anymore! Yay! But wait...didn't I just say that I went to physiotherapy today??

Let's be honest..I don't feel like you can ever have TOO much physiotherapy if it is still being beneficial and you are not hurting yourself. I've gone to workout classes for this first time this week. I've done two classes. They are difficult since I have literally zero muscle in my legs. The class is half an hour with exercises that involve both sitting down and standing up. I feel a bit of pressure to keep up...since the next youngest person after me is probably 55-60 years old! But then...it's almost like having a personal trainer. Having a personal trainer motivates you to push yourself to your limits..and this class does too. I'll probably go another couple of times before I stop.

I think the time for another vlog is creeping up. Hopefully I can get over this darned stomach ache soon so I can make one!

Vlog- Colon Issues

2011-10-26T22:48:00.001-04:00

So! It's been almost two weeks since I uploaded my first vlog. I did another one this afternoon and you can watch it below. I decided to do a bit of a "series" where I will discuss things that I have experienced that were not specifically kidney related as there are a few.

The video below is about the time I ended up with a perforated colon/abdominal vasculitis.

Tell me what you think! :)

Coughs and Colds!

2011-10-26T21:39:00.001-04:00

Yep, it's that time of the year...I have a cough and a cold/runny nose. It's not too bad anymore. Yesterday I didn't even want to exert the energy needed to lift the remote and change the channel. My dad bought me some cough syrup so that surely helped. My dad also made me a facial mask with lemon and organic honey. I put a drop of peppermint essential oil into the mask and put it all over my face. The peppermint really seemed to help with my sinuses and just made everything feel nice and tingly. I hope that I'll be much better in time for the weekend. I'm gonna check out my bro's digs for the first time.

Every time I get a cold, I am reminded of that horrible, horrible ear infection that I had a in January 2009. I'm telling you...I've never been the same after that. It was the first time ever having an ear infection (it was in both ears) and I was beyond miserable. Hmm..if only the doctor that I begged and pleaded with to relieve me of this pain believed me (he was a fellow and not my regular doctor, btw). I still see him around the hospital and I give him some heavy duty side-eye. When I begged him for help, it was a Friday. If he had only listened to me and believed me when I said that I am NOT having severe head and face pain due to my hemoglobin being low (i was getting a blood transfusion at the time), I wouldn't have had to suffer throughout the weekend without any antibiotics. When I went back to the hospital on the Monday, barely able to walk straight/properly because of the ear infection, one of the actual unit doctors saw me and right away knew that I needed antibiotics. Arghh! Anyways, I've told that story before and will tell it again in a vlog.

Here's to hoping I get over this cold soon so I can hit up physiotherapy tomorrow, see my bro's new place on the weekend, get cleared by my ortho surgeon on Tuesday, and hopefully soon head back to work!

First Vlog Afternath

2011-10-22T22:01:00.002-04:00

I must say...I am very surprised, happy, and humbled by the response that I have gotten from my first vlog. I've gotten a lot of positive feedback from many people.

I watch youtube videos all the time for various reasons. I started watching hair videos on youtube just over a year ago after I had taken a weave out and suffered a ton of breakage, especially at the nape of my head. I watched youtube videos for tips and information on how I could nurture my hair back to health. The videos I watched were helpful, easy to understand, and full of useful information. It was through the aid of these videos that I was able to achieve this goal:

After watching some youtubers speak to the camera with ease, I never imagined that it would be difficult for me to do the same thing. It was easy in that I knew that it was something I wanted to do and I am glad that I did it, but what I did not realize was how difficult it would be to speak to the camera with the ease amd poise that some of the youtubers I have watched do. I suppose this comfort behind the camera will come with practice!

I look forward to making my next video. I have a lot of ideas in my head of different topics I want to discuss. I can't wait to record, edit, and upload my next video. Again, thank you so much for all of your kind and encouraging words!

I miss my old Rheumy

2011-10-22T21:43:00.000-04:00

The other day was my first rheumy appointment with the doctor taking over for my previous rheumatologist. I almost always have mixed feelings when I have to see a new doctor. It worries me when someone that I am not familiar with wants to make changes to my "regular" routine.

Anyhow, I went to my clinic appointment today and say the fellow first. We discussed everything that needed to be discussed, including my hip replacement, kidney transplant, etc. After the fellow examined me, he left to go and get the doctor.

Much to my chagrin, my new doctor was doing a presentation or something elsewhere and was unable to come and meet me for the first time. He did, however, tell the fellow that he felt that it was unnecessary for me to remain on the drug mycophenalte mofetil (cellcept). The fellow explained that this medication is meant to help the kidneys, and since I am on dialysis, it is essentially redundant for me to take it.

Don't get me wrong; whenever I can remove a medication from my repertoire, I'm all about it...ESPECIALLY cellcept. It's the most expensive drug I take and it gives me the most trouble to receive money back when it comes to receiving reimbursement for it. But I guess what I find worrisome is the fact that a doctor wants to stop this medication so quickly and (in my opinion..I could be wrong) without a THOROUGH investigation/review of my chart. My previous rheumy is a very smart and reasonable doctor who knows me very well. I think that if it were in my best interest to stop this drug, he would have recommended it (or at least suggested it).

I've said it once and I'll say it again. The weeks just prior to me having to start dialysis all over again in 2004..I was being discharged from the hospital. A doctor that I had never met before came in and told me to stop taking a bunch of medication that I was on. At the time..I was thrilled! Less medication must mean that I'm getting better! He told me to stop taking furosemide, rampril...and a few others. He said that they weren't "good for my kidney". I found this odd, because I had been taking these medications for several years and I seemed to be fine for all of those years (more or less). It also seemed...strange that doctors would have prescribed all of these different medications to me if they were supposed to be "bad for my kidneys". Long story short...I stopped taking those medications and was once again in complete renal failure about 2 weeks later. So as you can imagine, I'm hesitant to just "stop" taking things, especially when someone I am not familiar with is the one who suggests it.

Anyhow, my answer to this was that I wasn't going to stop taking this medication...at least not yet. I emailed my old doctor to see what his opinion is. I hope he responds. I have my transplant coordinator Julie working hard to get me my transplant. I don't want to do anything that'll make me sick and put my transplant on hold yet again...!

Other than that, at the moment, my hemoglobin is 105! (or 10.5). Yay!!

My First Video!

2011-10-14T23:10:00.001-04:00

So I promised that I'd create a video on my youtube channel...and I did!

Tell me what you think. And yes, I know that I say "you know" a lot...I'm gonna work on that ;)

Thanks :)

Physio tomorrow

2011-10-13T19:55:00.000-04:00

Tomorrow will be my second physiotherapy session. Oddly, I'm looking forward to it. Well, perhaps it isn't overly odd, but I do want to go. Not necessarily because I love doing physiotherapy, but because I just look forward to getting out of the house as I have spent most of my time here as of late.

I'm limited in terms of going out and stuff because I do not want to overdo it. In my desperation and desire to simply get out of the house, last Sunday I went to a local Sally's beauty supply...just to buy some hair pins that I wanted. After that, I went to the post office to pick up a package. I took the bus. Taking the bus wasn't too bad as I luckily encountered some very polite and courteous people. One bus driver actually held my hand so that I could sit down when I got on the bus, and he held my hand when it was time for me to get off the bus. I was pleasantly surprised with that as he totally didn't have to do that...but I wasn't complaining! :)

I'm not feeling the greatest today. It's bad enough when you're not feeling well...but when stuff starts happening to you outside of you not feeling well...it's just a recipe for a bad day. For example, I went downstairs to the kitchen to try and get myself something to eat as I needed to take my medication. When I picked up the plate I wanted to use...another plate went crashing to the ground. I guess the bright side of that is the fact that the plate didn't fall on my foot..nor did break in to a million pieces. I picked up the 5 or 6 pieces, nearly in tears, and retreated to my room to eat breakfast.

I ate, took my meds, and relaxed a bit. I went to use the washroom that is in my room...and lo and behold..the toilet won't flush. Why, why, why me! Bright side? Well, at least the toilet simply didn't flush as opposed to it flooding/overflowing. Yep, I guess.

I called my Dad and told him what had happened. This had happened a few months before: there is something in the tank of the toilet that is broken. My dad fixed it on a temporary basis, but since it worked just fine for a number of months, I think the more permanent solution slipped his mind. My dad told me that if I lift the lid off of the tank and push or pull or do something, I can make the toilet flush. I opened the tank (hunched over from my stomach ache, mind you) and couldn't find what he wanted me to push (or pull). So I grabbed my new video camera, made a video, and will email it to my father for further instruction. (and oh yes, I can't wait to make some vlog videos to post on my blog!).

So that's all for now. My video is done uploading to youtube, so now it's time for me to send it to Dad for further instruction. Oh, and don't go looking for the video on my youtube channel- I made it private and only those with the link for the video can watch it :P

Scar 2 months post op

2011-10-09T00:54:00.002-04:00

Here is a picture of my scar at just about 2 months post op. I think the scar looks great. Great job by my surgeon! :D

-Florence T.
Sent from my BlackBerry device on the Rogers Wireless Network

Outpatient Physiotherapy

2011-10-07T21:32:00.000-04:00

I guess you can say that the highlight of my day was going to physiotherapy. Well, here's how that went.

I got there promptly at 12:55pm for my 1pm appointment. I got there a little later than I would have liked, knowing that I'd have to fill out forms and such. I went into the building for the first time and scanned my surroundings. There was an unlabeled door to my left. I looked in front of me and saw a flight of stairs. At the top of that flight of stairs, which led to another flight of stairs, was a sign that said "physiotherapy, sports injury, etc. 2nd Floor". I was puzzled to see two flights of stairs leading up to the clinic...with no elevator. Shouldn't the clinic either be on the first floor or shouldn't there be an elevator? What if someone comes in and is seriously injured? How are they supposed to get up there?

Anyhow, I slowly went up the stairs of the old-fashioned building. This second floor had a series of doors. The first one I saw said "physiotherapy". I went to open the door...but it was locked. I looked at the door and there was a sign that stated that they were closed from 12pm-1pm for lunch. Hmph.

I sat down on a nearby chair and waited. After about 1 minute, someone who looked like a janitor asked if I needed help. I told him that I was there for physiotherapy. He told me I was on the wrong floor. Just as I suspected...that unlabeled door is actually where I should have went. So, I slowly limped my way back down the stairs.

When I arrived, I paid the assessment fee and filled out the appropriate forms. I sat down and waited until about 1:25pm before being called in. Wasn't my appointment supposed to be for 1pm?

Anyhow, an older gentleman (maybe in is 60s) was the physiotherapist. He was very kind and asked me various questions. As I expected, he declared that I was much too young to have to go through all of these things that I had methodically listed on the information form that I had filled out earlier. I agreed.

I'm not gonna lie...this physiotherapist made me slightly uncomfortable. I dunno, just the idea of having him touch my hip and stuff. Nothing seemed inappropriate, as I know that I'd have no issues if it was a female (or even perhaps a younger man), but it was still weird for me. Heck, a couple of weeks before my surgery I went for a full body massage given to me by a woman and I had zero issues with that! But you know what I mean. I heard him communicating with the other patients and it seems that he's just a really friendly guy.

He started of by testing the strength in my hip by having me sit down and push down on his hand with my foot and push up on his hand with my knee. He said that my level of strength in my hip was good. After that, I lied down on the exam table/bed while an assistant came in and put a tens unit and an ice pack on my hip. That stayed on for 15 minutes. After that, the physiotherapist (let's call him Bill) came in and put some sort of oil or something on my hip. I was then directed to do some strengthening exercises while still lying down. After I did the first set, Bill asked me for the paper that showed the exercises that I had been doing since surgery was complete. After this, he put an ankle weight on my ankle and a rolled up towel under my left knee. From there I straightened my leg, lifting the heel of my left foot off of the table/bed. I have been doing this exercise at home, but not with the weight on my ankle. This definitely upped the difficulty.

After this, I put my pants back on and went to sign for my therapy. Bill told me to come back next week. We would progressively increase the strength in my hip and eventually get to more difficult things.

After that, I waited for my cab and that was that.

So I do look forward to getting my full mobility back. I hope these physiotherapy sessions will up the strength soon.

Next on my list...transplant.

Outpatient Physiotherapy coming up

2011-10-06T20:00:00.000-04:00

My in-house physiotherapy sessions have ended. I feel much more stable now that it has been almost 8 weeks since my surgery.

What I can say is that I do still feel a little apprehensive about putting my full weight my hip when it comes to stairs and stuff. I can go upstairs and downstairs just fine, but as advised by my surgeon, I only go one step at a time (go up with the good leg on step at a time, down with the bad leg one step at a time). But I do sometimes find myself accidentally trying to go up or down the stairs normally...and I catch myself. i'm quite nervous that I'm going to fall or dislocate something. It's almost reminds me of when I was still in the hospital and about to take my first few steps. I was walking...but I would "limp" when I stepped on my left leg...almost as if I wanted to put as little pressure on the hip as possible. Even though the physiotherapists told me not to limp and to put full pressure on the leg...I was still nervous. It took a few moments for me to realize that these physiotherapists must know what they're talking about since they do this everyday!

Tomorrow will be my first outpatient physiotherapy session. I'll be going to a nearby physio clinic. I told my parents about my plans-they are both on vacation overseas. My father told me to make sure that I make sure the physiotherapists know my limitations and not to push myself. I have to admit...he's right. When my in-house physiotherapist wanted me to do an exercise that involved me doing a squat, and another one that had me lie down on my (good) side and do leg lifts...I had to draw the line. The squat wasn't happening because my right knee hurts and is going to need to eventually be replaced as well...and the leg lifts were just...well...painful..!

I do look forward to having my hip up to 100% and I look forward to my physio appointment tomorrow...which will likely be more of an assessment period. Wish me luck! :)

Update!

2011-09-22T20:31:00.000-04:00

I know, it's been a long time since I've updated. I'm sorry!

My bionic hip is coming along nicely. The last pic I took of the bump was about a week ago...and to be honest I don't feel like stripping my pants off to take a new picture. The hematoma is still there, but considerably smaller. It also doesn't hurt, and that's always good.

I went to see both my ortho surgeon and my oncologist today. My ortho looked at the x-rays I did while in Emerg earlier this month and said everything looked fine. He also said the hematoma as well as the scar are both looking good. I will see him again in November. But for now, I'm allowed to walk around my house without a cane. I will keep up with the physio and eventually move on to out-patient physio. When I walk without my cane, I still limp a bit. My ortho said that this was normal and that would eventually go away. After all, it has only been about a month since I had the surgery. Below is a picture of my x-ray. Kinda cool looking I think.

When I saw the oncologist, I definitely got some good news. The oncologist told me that when I had the hip replacement surgery done, the bone that was removed was sent off to the lab to be tested. Considering the fact that there is much myeloma talk about my bone marrow and such, I felt that this was an excellent idea. I actually had no idea that this had been done or that they were even thinking of doing that until my oncologist mentioned it. She went on to tell me that the bone was completely clear of any abnormalities. Excellent news.

She also told me that my blood work was steady-no major changes. Also great news. She said that she would have no problem with me going ahead with the kidney transplant. Of course, it's necessary for all of us who are involved to know what the risks are in terms of whether these abnormal cells do turn into something other than just a "smoldering myeloma". But she is confident about the available treatments for myeloma should they be necessary, and she does not feel that they would interfere with my kidney transplant. Great news!

The first thing I did was bbm my brother to tell him the great news. He's just as anxious to donate his kidney to me as I am to receive it. He was pleased to hear the news.

After these appointments, myself and my father met up with Julie, my transplant coordinator. We had already planned to meet for coffee previously. I was happy and excited to share my news with her. She told me that once my oncologist's report comes through, the transplant team would review all of my information and make a decision about transplant. That might take a week or two. That doesn't bother me too much as I am still recovering from the hip replacement surgery anyways. All I know is that I am stupid excited about hopefully getting this transplant done.

I hope this time is my time.

Hematoma today

2011-09-09T00:47:00.002-04:00

It's still the same size :/

-Florence T.
Sent from my BlackBerry device on the Rogers Wireless Network

Hematoma Madness!

2011-09-09T00:30:00.002-04:00

So of course my recovery from hip replacement surgery couldn't just be...."smooth". Nope.

Two days before this incident, I took a picture of my thigh. It looks fine here, but in retrospect, I can kinda see a bump forming on my thigh below the steri-strips. Take into account that I have ZERO hips.

On labour day, my father and I went out for breakfast. When I woke up that day, I noticed a small bump on my leg below the incision. Nothing major-barely noticeable. So Dad and I went out for breakfast, and then to the mall. Dad wheeled me around in the wheelchair.

When we got home, I got into bed and started doing some homework. My brother had come over for a visit and was in my room. When he was there, I happened to glance at my leg again. The bump was bigger. I asked my brother, who was at least 6 feet away from me, if he could see the bump on my thigh. He said that he could. He suggested that it was perhaps just my leg healing. When he left, I decided to take a picture of the bump.

I told my Dad about it and showed the bump to him. We both decided that we should have a medical professional look at it, so Dad called my uncle (ER Nurse who also removed my staples) to take a look. My uncle got to my house in about 20 minutes.

After examining the bump, he said that he felt that it was a hematoma. It being labour day and after 6pm, he suggested that I go to get it checked out the following day. I agreed.

Shortly after my uncle left, the bump REALLY started to hurt. My mom wondered if it was because the bump had just been poked and prodded for the last half an hour. I didn't know...all I knew was that it hurt. I took another picture and compared the two. The bump had gotten noticeably larger.

That's it...we're going to emerg..now.

When Dad and I got there, it was quite (and shockingly) empty. I got called in after about 5 minutes. When the doctor finally looked at it, she agreed that she thought it might be a hematoma, but would need to do an ultrasound to confirm. Unfortunately, there were no ultrasound techs available that day so I'd have to come back tomorrow. She put my name in the book for 9am. A transporter came to wheel me to x-ray.

When I got to x-ray, the two x-ray techs had me bend and pose in uncomfortable and down right painful ways. I was on the brink of tears as the transporter wheeled me back to my space in the ER. I was paralyzed with pain. The doctor, who had already authorized a 1mg pill of morphine, told the nurse to give me another dose as I was clearly still in pain. I received the second dose (it didn't help either).

The doctor gave us a prescription for more morphine and sent us on our way to return in the morning. Thankfully the pharmacy was open and I was able to get the medication. Unthankfully...the medication did nothing for me and I whimpered in pain all night.

The following day, my sister took me back to emergency. I had the ultrasound done by the tech. A doctor came in moments later to look himself. He asked me if I had had any trauma to the area, such as a fall, a bump,etc. I hadn't. He found it odd that such a hematoma would appear without trauma. *shrugs*.

Back to emergency now. The doctor saw me and wanted to do blood work. I was sitting in the ER hallway when a nurse came up to me with tubes and a needle, ready to draw blood. I asked her if she planned on drawing the blood right here in the hallway and she said yes. "Interesting..." I said, as I found it odd to draw blood in the middle of a hallway with tons of people scurrying about. My sister piped up and stated that it would be preferable if we could take the blood in the adjacent EMPTY room. "Uh..sure. If that's what you want" the nurse said. Oh brother.

Anyhow, in the meantime, the ER Doctor called the ortho doctor. When the ortho doctor (Andrew) came in, he looked at my thigh and said he was going to speak to my surgeon. He returned shortly after and said he was going to have my take anti-inflammatory pills. He also gave me 2 oxycodone pills as well as a prescription. These pills definitely helped with the pain. He said that if the swelling did not go down after a couple of days, I should come back. He said that he did not want to tap the hematoma right away, as infection is always a concern when it comes to tapping. I kinda wish they would tap it-just get all the junk outta there and let's go!

The following day, the bump looked more or less the same, and it still looks the same today. I'm hoping the anti-inflammatory drugs kick in soon.

I will keep you posted about my hematoma madness!

My hip is bionic!

2011-08-25T15:20:00.000-04:00

Hello all,

Sorry for the delay in posting this very important update. But I do appreciate all of the well wishes I received via my blog and via twitter.

So yes, I have a new titanium hip! I went in for surgery on Aug 17 (Wednesday) and got home on Aug 22 (Monday).

I got to the hospital at around 6:30am. I checked in and then sat in the waiting room for about 10 minutes. I was then called in to put on my hospital garb.

I had my vital signs checked, including my blood pressure, temperature, etc. I then went into another room with my father and waited to be seen by the anesthesiologist. He went over all of the pertinent info, including the fact that I'd be receiving a nerve block (aka big scary needle in my back!) I was scared...I don't like needles in by back! (Though I'm clearly okay with shoving large needles into my own arm haha).

Shortly afterwards, I kissed my Dad goodbye and it was off to the "room before the OR" room. I walked there with the anesthesiologist. It was a long walk...maybe 2 minutes. I joked to him that the walk was quite long and I felt as though I was headed to the electric chair. He laughed and said "kinda like the Green Mile, huh?" And I said "yeah, dead woman walking!" He laughed and said he was thinking the same thing but did not know if he should make such a joke since he didn't know my sense of humour. We both laughed at ourselves and each other's crude sense of humour.

I went to the room before the room and the anesthesiologist put the IV into my hand. I must say that I'm a big fan of having anesthesiologists putting IVs into my hand. They're quite good at it and never miss. Well done.

Soon after, I found myself putting my face into a contraption similar to one that you'd put your face in if you were having a "sit down" massage. The nerve block was put in and there was little pain.

I was taken to the OR and greeted by nurses and my doctor/surgeon. I laid down on the bed and made it clear that I wanted to be completely knocked out. Soon...darkness.

I woke up and heard what sounded like a chisel and a hammer on a piece of stone. I looked down and saw a big green cloth blocking my vision to my hip. Yep, the surgery was still going on. I was not in pain, but I felt it necessary to make it known that I was awake and unhappy about it. I said "ow.". Then soon after...darkness again.

What happened afterwards is a bit of a blur. I went to the "room after the room" and was taken care of by a nurse. She asked me to wiggle my toes. I was only able to wiggle the toes on my un-operated leg, She told me I was doing well and I was soon taken to my room. Much to my surprise (and delight) I was taken to a private room. This is probably because I would need dialysis and it would be much more convenient to be in my own room vs. share with someone else.

My dad was there and I was happy about that. I looked to my right and saw my PCA pump (patient controlled analgesia). I used it. I was allowed to use it every 5 minutes. I later found out that there was a kink in my line and I wasn't getting ANY of the morphone...but when the line was un-kinked, I DID get a large dose (22 hours worth) of drugs. Let's just say I was high for about 24 hours.

The first bandage on my hip seemed to be a pressure bandage in order to ensure that there was no bleeding/leakage.

I had lots of visitors and that was nice. Having the private room was especially nice since I knew that I was not disturbing my next door neighbour.

I actually wanted to document a lot of my surgery via video, but the camera I've been waiting for samsung to send me a pocket cam to replace a defective one. I first sent them my defective device in mid June. Well..let's just say that I don't have a camera yet.

Anyhow, after a couple of days, my pressure-typed bandage was changed to a regular gauze bandage that wasn't as bulky.

I had the PCA removed and used a lot of oral pain killers.

This breathing apparatus helped me to practice taking deep breaths. I was told why this is very important, but unfortunately I cannot remember.

I'm at home now and I'm adjusting to the whole "not being able to walk" thing. Well, I can walk but I have to use a walker to walk, and a cane to go up and down stairs. I use my cane in my room as it is much to small to use a walker to get anywhere. My staples are supposed to come out next week Wednesday, which would mark the 14th day since my surgery. I am going to make sure that THEY make sure that the staples have been in long enough. I don't want/need my leg popping in like my stomach did when THOSE staples were removed too early. But the person who will be removing them will either be a close family friend (i refer to him as my uncle) who is a very experienced ER nurse, or I will head to my family doctor to have him remove them.

The next pic is of my staples in my leg. It doesn't look gross to me, but if you are sensitive, perhaps scroll quickly and pass this picture.

There are other stories to tell, including my stories of physiotherapy, and of hospital nurses (one in particular-I know everyone loves a good ol' nurse story..!). Those posts will come in the future.

That's all for now and again, that's for all of the thoughts, prayers, and positive energy!

One More Sleep

2011-08-16T19:38:00.000-04:00

One more sleep until my hip surgery!

I'm doing dialysis now and plan to be off around midnight or just before.

I'm passing the time on dialysis by watching Billy the Exterminator.

...and currently listening to Drive by Incubus. Oh how I love this song.

Wish me luck!

Devita Solar Protective Moisturizer SPF 30 plus

2011-08-06T10:11:00.002-04:00

I just bought the above sunscreen online. It's no secret that us lupies need to wear sunscreen. I was watching a youtube video where someone mentioned that they use this sunscreen. My skin is quite sensitive and breaks out easily. So I went to Devita's website and saw the following description for this sunscreen:

Sunshine Go Away Today... And it will with DeVita's feather-light, never heavy, oily or greasy moisturizing sun block. It's hard to believe (but it's true!) that our all-natural, sheer, moisturizer/sun screen is a deeply moisturizing daytime cream and sun block all in one! DeVita's exclusive formulation is created specifically for those sensitive to breakouts. This moisturizer is light enough to wear under make-up, absorbs quickly, and yet leaves the skin nourished and feeling soft and smooth. Offering full spectrum UVA/UVB sun protection with a SPF of 30+. Safe for adults and children. Titanium Dioxide Free.

DeVita skin care products are 100 percent Vegan and Paraben Free. They are considered Gluten Sensitive Safe and never contain GMO's. DeVita products are never tested on animals (only humans!).

Sounds good to me! I will try to do a review of it...but that may take some time, especially with the surgery coming up. That said, I bought the sunscreen from http://www.iherb.com. They had the most reasonable pricing, especially when it comes to shipping to Canada. Some sites were charging $25+ for shipping! Huh?? This site charged $4 to ship to Canada.

Also, if you use the following coupon code, you can get an extra $5 off! Not bad! MIZ923 (isn't it funny that the first three letters of the coupon code is "MIZ"? hehehe)

So that's all for now. I wonder if I'll get it in the mail before my surgery..?

1 hour massage = win

2011-08-05T23:33:00.000-04:00

Yesterday I was looking online for places to get a massage close to my home. I found a good place that was pretty close and easy to get to. I was delighted when they called me back this morning and told me that there was space available today.

I went today at noon for a 1 hour massage. My massage therapist today was Sarah. Now I must admit-usually when I'm getting a massage, I just want to be quiet and enjoy. But it was different with Sarah. She chatted with me at the beginning of the massage after going over my (extensive) medical history. I think she wanted to see if i actually wanted to chat or if I wanted to just relax. At first, yes, I wanted to relax. But as we started chatting, I found myself bringing up other stuff to talk about if there was a gap in conversation. I WANTED to talk to her and I actually liked listening to her when I wasn't talking and while getting the massage. I really like her and I'm going to go back. I made an appointment to go back next Friday, but I don't know if I should.

The surgery is the following Wednesday. I'd think that maybe it might not be a good idea to have someone slather me in oil, especially since the instruction binder that I was given after booking the surgery says that I shouldn't even use skin lotion for the 5 days prior to the surgery, and I am to bathe myself in chlorohexidine. Sucks...because I really want that massage. I think anything earlier than Friday would be too much. Sarah is only in on Mondays, Tuesdays, and Fridays. Conversely, another thing for me to consider is the fact that after I have the surgery, I won't be able to get any massages for a while. Hmph.

I felt great after the massage. I'm glad I did it.

Dream that I had last night

2011-08-01T22:34:00.001-04:00

If you're an avid reader of my blog, I'm sure you'll have noticed that I like documenting my dreams when I remember them. We obviously have dreams every time we sleep as it is near impossible to simply turn your brain off, but remembering your dreams is a different story.

Last night I dreamed that I was somewhere, perhaps a high school. I was standing in the gymnasium and a burly football jock-looking guy came over and started kicking my foot. It didn't cause me to move or fall, but it hurt. I immediately went and told the school principal, and the bully got in trouble.

The school that I was in seemed to have television screens all up and through the hallway. As I walked by one of the screens, I glanced up at it and it read "______ is going to kill you!" with ______ being the bully's name as I cannot remember his name or if he even had one. My first instinct? Run.

I ran down a stairway that wasn't often used, knowing that it would be unlikely that he'd be there. All of a sudden...I was in the gymnasium again and was face to face with the bully. He approached me aggressively. I knew I couldn't just stand there. So, I kicked him in the stomach a la Bruce Lee.

LOL!!

The bully went flying to the ground and was defenseless against my Bruce Lee kick. I had won. I stood up to the bully when he bullied me in the first place, and I didn't let him get away with it when he tried to intimidate me.

Life has all sorts of challenges. While they may seem big...face them. Head on. That's what I did in my dream, and that's what I do in MY life.

Pre Admission appointment today

2011-07-29T00:12:00.000-04:00

I decided that I had better try and compose this post before I fall asleep as it is almost 12:am and I've been up since 5:45am last night!

Today was my pre-admission appointment for my hip replacement surgery. I did some blood work, a ECG, and saw a ton of other people. I saw/spoke to a nurse who thoroughly went over my history. She typed much of it into the computer, so I hope that means it'll be there for all doctors and medical professionals to reference the next time they want information.

Anyhow, I saw a pharmacist who went over my medications. She told me which medications to take the day of the surgery, which ones not to take, etc. That visit was pretty self explanatory. I also went to a group meeting where another nurse and a physiotherapist spoke to us. The physio spoke to us first. She told us about some of the walking and showering aids we would need after discharge. This includes a cane, walker, etc. She also told us about the no-nos for after the surgery. I was aware of most of this since I read the binder I had received a few weeks before.

I have to say that there was an elderly woman who was hard of hearing. Man, was she ever a riot! Sometimes she was happy and funny. At one point she and I made (accidental on my end) eye contact. When we were looking at each other, she smiled, winked, and waived at me. I nearly busted out in laughter when she did that...she's so funny. But, she was very concerned with things costing her money-for example, walkers, canes, shower chairs, etc. She was also upset that the nurse has given us so much information about the surgery. By "so much information", I mean the fact that the nurse told us about how we'll be stapled together, how the anesthetic will work, etc. This nice old lady would just prefer to go to the hospital, get the surgery done, and be done with it. I must say, her daughter or care giver or whoever the woman with the elderly woman was...she was a definite instigator in my opinion. I'm gonna say it's mother and daughter. The daughter knows how her mother is, so why let your mother talk and talk and talk for 5 minutes about something, especially when there are 5 other patients there in the meeting? When the mother started CRYING, the daughter said to her "Don't cry". Then the nurse said something like "it's okay to cry". Then the daughter said something like "You know what? I know what I'm doing. She's upset. You guys give too much information". Huh??

I used my spy cam to film a bit....

Oh well.

I also saw the anesthesiologist. He was quite impressed with the fact that I'm on home hemodialysis and I do it myself. I guess he had never heard of it before. He was especially impressed with the fact that I cannulate myself. He asked me if I was a nurse or medical student and I said no. He made me feel super smart :).

He told me about a spinal freeze (I think that's what he called it?) that'll be put in my back for numbing. I'm always a bit scared about needles in the back for some reason. When I asked him what kind of pain I can expect, he compared it to the needle that I would get in the mouth from a dentist. Still scary to me! He said anyone who can stick needles in their arms and has been through all I have been through could handle the needle in the back. I told him that I had had an epidural before...and I was scared out of my mind. The anesthesiologist had to actually give me a relaxing needle in the vein of my hand before doing the epidural. It helped. I also remember being pissed that my epidural stopped working about 1.5 days later because the nurse forgot to flush it. I went through all of that and didn't even get the full benefit of the epidural!

Ahh, but I digress. He said that the epidural needle is much larger than the needle that would be used for this particular surgery. He said this surgery would make me numb from just under the chest all the way down to the bottom of my legs. He said I had a choice of being put to sleep during the surgery or staying awake with minimal anesthetic. There would obviously be a blanket covering my mid-section so I wouldn't be able to see into my flesh. Um..i'll choose to go to sleep please.

After that, my appointment was done. It was about 12:30-1pm ish and my appointment started at 7:30am. I came home, ate, did some work on the computer...and now I'm wiped! So I apologize in advance for any spelling/grammar mistakes :)

A name has been found for the white spots on my face!

2011-07-20T17:46:00.000-04:00

Hypergranulotic dyscornification.

Huh??

Basically, the skin isn't maturing properly. That's what I took from what my dermatologist said to me. She's going to take pictures of it to show to other doctors.

Anyone else have experience with this?? *deer in headlights face*

Oncology Appointment

2011-07-19T22:09:00.000-04:00

Today was my oncology appointment.

For the other few times that I went to see my oncologist, I did not have to see a fellow. I have to say...I was slightly disappointed when a fellow walked in. I'm sorry, I know that hands on experience is the best experience. However, when you have a chronic illness like me, and you see and talk to a million doctors like me, and you get asked the same exact questions time and time again...like me..it gets exhausting.

Anyhow, I spoke with the fellow who asked me the usual questions and did the usual checking of blood pressure, pulse, heart rate, etc. He told me that my numbers were stable and I did not need any treatment. That's always good news.

When my doctor came in, I asked her about the prospect of transplant. She explained to me again the fear of people getting transplant when they have cancer or cancer-like diseases. Our immune systems help us fight off cancer, and if one receives a transplant, the autoimmune drugs taken obviously lower our immune systems. So, theoretically, if I get a transplant and am on autoimmune drugs, that can lessen my ability to potentially fight off the cancer.

As I opened my mouth to retort, she then said "however, one could argue that you are already on autoimmune drugs and are doing fine..."

EXACTTTLY! I'm already on prednisone, plaquenil (hydroxychloroquine), MMF..I'm totally on a lot of autoimmune drugs already. My oncologist also went on to tell me that she has treated people with cancer-like illnesses who have had transplants (like liver, heart, etc.) and they did just fine. She also stated that if things should progress with me on the cancer front, she didn't think that the medication she would use to treat the cancer would conflict with the transplant. At the end of the day, she's going to have to have a meeting with my nephrologist to see what the next step is. Hopefully I'll be able to blog about a transplant soon...and hopefully the joy and anticipation won't be taken away from me again.

P.S.- today is one of the hottest days that I can remember...and I love every second of it. Don't worry, I covered up and wore sunscreen ;)

Flow on Lupus!

2011-07-18T16:11:00.000-04:00

Hey All,

I have some new things coming up visually where my blog is concerned. The first thing is..I registered a domain name for my blog! I have registered http://www.flowonlupus.com as my domain. My blogspot domain will still work just great for those who may have my blog bookmarked or something like that.

More goodness to come!

chlorhexidine?

2011-07-16T15:02:00.004-04:00

Yesterday my Mom and I went on a mission to find chlorhexidine. First stop: Walmart. The pharmacist told me that they had the type that is to be used as an oral rinse, but that was by prescription only. I'm assuming that the one that I want cannot be used orally.

Next, Shopper's Drug Mart. I went straight to the pharmacy. There were two people ahead of me. I waited and I waited. An older woman came and stood in FRONT of me. Huh?? I decided to be respectful since she was older than me. She saw that I was standing there but still went in front of me. She was not THAT old. Maybe mid-late sixties. After about 10 minutes, what I found out was the pharmacist's assistant expressed to the woman who budded in front of me that the pharmacist had called in sick. The assistant then went to the back where the medication is and started doing something. The woman who budded had asked the assistant whether she'd be able to get her medication or not. The assistant looked at me and told me that she'd just be a few minutes. Shortly after that, another gentleman came began to wait. Another woman who was waiting behind me decided to leave as the wait was too long for her.

When the assistant noticed the gentleman waiting, she said to him that it would be just a few minutes. The man said "oh, I want to drop off my prescription". The assistant came over, took his prescription, and started talking to him. She then started typing things into the computer.

HUH?? She did not even ASK me what I was waiting for, but since this guy was "just dropping off a prescription", she decides to help him first? She completely ignored me and she knew I was there first! I looked over to my mom who was dosing off on a chair.

"MOM" I said loudly. My mom woke up and looked at me. I told her, in a loud voice, that we were leaving. I looked back at the assistant and said "I've been waiting for 25 minutes and she goes and helps someone who came after me when she knows that I've been waiting for so long!" I turned around and looked back at my mother as I did not want to hear or see the assistant try and apologize to me and try to help me now. My mom then said "wait!" as in, wait a few more minutes for the assistant to help you. I replied with a stern NO and walked towards the exit. I left the store and stood beside the van waiting for my Mom who came out just a few seconds after me. She knew I was upset.

I hate being and feeling ignored like that. I sometimes feel like I am not taken seriously because I look young. I'm not-I'm a grown woman who deserves respect. In fact, even if I was young, I deserve respect anyways! If I was a young person standing there, I obviously have a reason to stand there...I'm not standing there to observe the scenery!

When we left and got home, I still felt very upset. I was upset that I felt mistreated, especially since my job's primary function is customer service. I also felt upset that I perhaps overreacted. I didn't use any curse words, but I did make it clear that I was very angry. Rightfully so I suppose, as I just wasted nearly 30 minutes being ignored, but I still could have acted better. It's just that...two people went in front of me. I'm not invisible.

Well I just wanted so share that as it upset me so much. I think if I was having a better day, it wouldn't have upset me so much. Nothing in particular happened to make me upset earlier in the day...it was just...one of "those" days.

Needless to say, I am yet to get my hands on any chlorhexidine.

Double Time!

2011-07-14T22:39:00.003-04:00

I'm sitting here feeling unmotivated to do homework, so I thought I'd take a break and blog. I know that I have to work twice as hard to not just finish my courses on time, but to finish them EARLY. I am taking 4 online courses with two of them ending in August and the other two ending in October. Only 1 of the two courses ending next month have an exam. That final exam is actually the same week as my surgery. That said, I want to finish everything early and do that exam bright and early on Monday morning.

It's kinda weird how nervous I feel. For someone who has been bed ridden before for what felt like an eternity but was only actually several weeks, it's THAT that scares me most. Everything associated with me not being able to do things myself and not being able to move around freely scares me. My Dad already got me a raised toilet chair thing. That way I don't have to bend all the way down to sit on the toilet.

I remember being in the hospital and hating that toilet chair. It was never there for me, it was usually there for the person I was sharing a room with. That said, whenever a nurse would take the person I'm sharing a room with to the washroom, they'd bring the toilet chair to her bed, sit her in the chair, wheel it to the toilet so she could use it, wheel the chair back to the woman's bed, then return the chair to the toilet and LOCK it there (there was a little lever on the bottom wheel area that can be locked). I never understood why they did that. Sorry, but my bum doesn't want to sit on the toilet seat that a stranger bum was just on. And, since I'm in the hospital, I'm probably weak and/or tired, so I don't want to have to find a way to bend down to unlock a toilet chair to move it out of the way. If they need to wheel the chair over to her so she can sit on it...why not just leave the toilet chair beside her?? **end rant.

My all day pre-admission appointment is two weeks from today. I have a couple of documents that I need to have my doctor fill out...I suppose it will be my nephrologist as my rheumy is gone! :(

The binder I received is plenty detailed. My favourite page is below:

How to avoid becoming septic 101:

Wow..that was fast.

2011-07-12T23:55:00.006-04:00

Today was my ortho surgeon appointment. When I got there, I spoke to the fellow first. He was quite nice. He asked me how I felt, and if things felt worse, etc. I told him about the issues with my knee and hip. He also looked over the x-rays I did last week.

When he called the actual surgeon in, the surgeon told me about hip replacement surgery after I told him that I thought that my hip was worse than my knee. He then asked if I wanted to do the hip replacement surgery and I told him that I did.

I signed some papers with the secretary and received a binder full of information. Wowzers. There are a lot of rules. For example...I'm not allowed to cross my legs! Yikes. The date is in August. Unfortunately, it is one day before my Dad is going to take the kids in his program to camp! He might leave the camp early. I'd hate for him to do that on my part, though. I'm going to see if there is anyone else around who can come and spend the day with me. My Dad will be there for me the day of the surgery all day, which is a Wednesday. My sister can perhaps hang out with me during the day before she goes to work on the Thursday my dad leaves...and my Mom should be there for me in the evening. My sister can maybe pick her up. Same with Friday. On Saturday and Sunday, my Mom is off, and my Dad is home again on Sunday. I'm sure it'll all work out. Mind you, this is just me being spoiled. I mainly want someone there to bring me non-hospital food! *is embarrassed*.

I'll be admitted for 4-5 days or so. Physiotherapy will begin one day after surgery. Ugh! I'll have to do in-centre, 4 hour dialysis! *gag*. Can't they wheel a dialysis machine in, set it up, and leave it beside me and let me dialyze myself overnight? Yeah I'm guessing I won't wanna lift a fork to my mouth, let alone cannulate myself.

So, I'll connect with you all again closer to the date. I'm kinda nervous...mostly about the physio and limitations I'll be under after the surgery for about 3 months as opposed to the surgery itself. Eeep!

Oh, and I'm totally cancelling this hip replacement surgery if anything comes up in terms of kidney transplant. Please help me pray that a transplant date will be ok'd and will come up soon, necessitating the cancellation of this hip replacement surgery! It's not that I don't want the hip replacement surgery, but I obviously have priorities to worry about here! Hehe

Rheumy and Nephro appointments

2011-06-30T23:30:00.004-04:00

What a long day I had!

The day started off with a visit to TWH to see Dr. Fortin. It was sad because I knew it would be my last appointment with him before he headed off to Quebec. The appointment was good and there are no changes where my medication is concerned.

We discussed my prednisone. Right now, I'm on 5mg daily. Passed experience seems to show that I cannot be without prednisone or else I'll flare. But, that was several years ago and perhaps it was tapered too quickly. Dr. Fortin kept me on a small dose of prednisone because he did not want me to flare up right before a potential transplant, something that has occurred before.

But now, with this myeloma diagnosis, he feels that the transplant will be on hold for quite some time, and therefore wonders if it is worth it to perhaps look at dropping the prednisone even further. This concerns me a bit. It kind of...solidifies the fact that my transplant would be on hold.

After saying our goodbyes, my father dropped me off at TGH for my nephro appointment. At that point, it was about 11am and my appointment was not until 1pm. I quickly ate a bagel from bagel stop and a soy latte from starbucks. I was quite hungry as I had to fast for my bloodwork earlier. I decided afterwards that it would be a good idea to do my x-rays for my up and coming appointment with the ortho surgeon.

I went to the medical imaging department, checked in, and got changed. After I got changed, I was told that my xrays could not be done. I had to do them at TWH (where I just was for my rheumy appt) because only that hospital could produce physical xrays as opposed to digital ones on the computer. Since it was a possibility that I would be having surgery, the surgeon would need to bring these physical xrays into the OR with him. The technologists told me that she had called TWH and the line up for xrays was not long.

Damn. So I put all my clothes back on and ran outside to catch the hospital shuttle bus back to TWH. When I got to TWH..it was the funniest thing. There were about 30 people waiting for x-rays. It was already 12:10pm. I'd have to have my xrays done and be outside to catch the bus by 12:45pm as the shuttle buses come every 15 minutes. I told the secretary this when I checked in and she said she'd expedite my wait. She then went on lunch.

I waited and I waited. It was now 12:40pm. The secretary finally came back. I told her that I was leaving to go to my appointment at TGH, and I asked if she could give me some sort of priority when I came back since I'd have to come ALL the way back here again. She seemed surprised that I hadn't been called yet. She went somewhere to speak to someone and then rushed me in. She asked me to give her the phone number to the doctor I was going to see so she could call them and tell them that I'd be late, so I did.

I did my xrays and was done by 12:55pm. I threw my clothes on so quickly that it was only a coincidence that I put my clothes on correctly. I limped/ran to where the shuttle bus was. I could see it parked as I quickly limped down the long hallway to the doors. I made it.

I got to my appointment about 15 minutes late. I saw the fellow first, then Dr. Richardson. I asked him about his thoughts on transplant. He said that he and my oncologist would sit down and talk about it after my appointment with her later this month. He reiterated the story about another patient that he had who had abnormal proteins in her bone marrow and it did not develop into anything. That is certainly encouraging.

I went outside and my Dad was there with a slurpee and beef patty. With all the running up and down that I did, the slurpee went down very smoothly. I went home and took a much needed nap!

Next appointment: next week- ortho surgeon! Will I be able to get this surgery so I can stop limping around? We'll see what he says...

Rheumatology and Nephrology appointments tomorrow

2011-06-29T12:56:00.003-04:00

Tomorrow i'll be going to my rheumatology appointment at 9am, then I have my nephrology appointment at 1pm. Somewhere in between there, I'll get my x-rays done for my up and coming ortho appointment. Tomorrow will be my last appointment with Dr. Fortin.

I'm pretty sad about that. Dr. Fortin is such a great guy. I was going to make him cupcakes, but the person who was going to help me is not able to help anymore..and taking on the making and decorating of the cupcakes was just too much of a project for me and I'm pretty sure I wouldn't make it.

In other news, I used my aeroplan points to get a samsung digital camera back in November. I did not really get to use it as the opportunity never presented itself. So, I wanted to use it a couple of weeks ago as my friend was getting married. I noticed that, after recording a "test clip", the there was a loud "buzzing" sound when I zoomed in and out. I told samsung and they told me to send it in for service.

I received it back on Monday. The repair order in the box stated that everything was "to manufacturer's specifications". Huh?? So I called them back and they contacted the repair centre. I was told that a "senior repair person" had looked at my camera and was convinced that there was no real problem. I then said "ok, so basically what you're saying is that I'm stuck with a camera that doesn't work properly?" The gentleman I spoke to then told me to upload a video to document the problem, so I did. You can view the video here. Clearly not normal! I emailed the video to Samsung as instructed.

After emailing it, I received a call the following day where they did in fact agree that this was not normal. I received a UPS shipping label and will need to ship it out again. Hopefully it comes back fixed this time, even though the wedding is now over.

Wedding pics

That's all for now, I'll report back with what my rheumatologist & nephrologist says.

I Would Never Leave You

2011-06-16T23:50:00.003-04:00

I had a dream two nights ago and I told my Mom about it last night.

In my dream, my Mom, myself, and my brother's girlfriend were supposed to go to Montreal. Our flight was at 6pm. My mom was in the kitchen cooking (specifically, she was chopping red peppers). My brother's girlfriend said that she had to go to the Rogers Centre for some reason...she had to pick something up. I agreed to go with her, but let her know that it was already 4:30pm and we had to get to the airport soon. She told me not to worry. My Mom said she would meet us at the airport.

We got to the Rogers Centre at around 4:45pm or so (not really possible from my house...it would take at least 30-45 minutes, depending on traffic). I told my brother's girlfriend that we needed to leave...we were going to miss our flight. She told me not to worry. Finally, at 5:15pm, we got into her car and drove to the airport. We got to the airport at 5:30pm (again, not possible-too far).

We went to the ticket counter- we were too late. They refused to let us in and they told us that we were too late for the flight. The flight was leaving in half an hour, and by the time we got through security, got checked in, etc., it would be too late. I was crushed, especially since my mother was already through security and stuff and was already on the plane.

That was the end of my dream.

My mom responded by saying "Well, I guess that particular journey wasn't the journey for me." I sat there, sipping on my slurpee, pondering that statement. My mom continued by saying "Besides, that would never happen. I would never leave you. I would never get on that plane without my baby. Never, never, never".

My mom and I were in the living room. I was sitting on a rocking chair and she was sitting on the floor in front of the couch. I looked down. I didn't want her to see me cry. What she said triggered something in me and it touched me deeply. I don't know how to describe it.

I love my parents.

My oncology appointment

2011-06-08T21:06:00.004-04:00

First, let me start off by saying that today is the hottest June 8th in the history of recording temperatures in Canada. Seriously...it's hot.

Yesterday was my oncology appointment. Man, I really like my oncologist...but man are her wait times long! My appointment was scheduled for 11:30am. I got there at 11:15am. I got called at 12:30pm to sit in the smaller room where the doctor comes to talk to you. The doctor came in at about 1:20pm. Man or man.

Anyhow, the good news is that my blood work has not changed...meaning...things are stable and not getting worse. I'm pretty glad about that...but still wondering about transplant stuff. OMG, as I typed this, I just remembered that I forgot to ask the doctor about her conference in France and speaking to the mayo clinic! I'm dumb dumb dumb! I'm going to look up her email address online and see try to email her.

Anyhow...that's where I'm at right now. Nothing new...but as they say, sometimes no news is good news. I'm gonna go organize my dialysis supplies room a bit in preparation of my delivery tomorrow.

Knee/Hip Replacement

2011-06-05T21:31:00.003-04:00

My appointment with the oncologist is on Tuesday...wish me luck.

I was just speaking to another loopy about her hip replacement surgery. I've seen an ortho doctor about 3 or 4 different times over a couple of years. He has suggested that I wait until the pain in both my knee and hip become unbearable before doing knee and/or hip replacement surgery. I agreed, assuming that "doctor knows best". I spent that last week or so limping around the house because of severe pain in my right knee.

This got me wondering. Why do I have to suffer through varying levels of pain until my knee and/or hip absolutely collapses before something can be done? Man do I miss the days where I could grab a couple of dumbbells and do some squats or something. I miss the days where I could ride my bike around and not worry about my knee or hip.

Anyhow, while speaking to Sam, she told me about her hip replacement surgery and how much better she felt after it. She can do anything and everything she wants to do. She feels the way she felt even before the need for surgery arose.

I know I deal with an energy problem, but exercising and being active really appeals to me. I think it might be time for me to call the ortho, set up an appointment, and let him know that I REALLY want to discuss this knee/hip replacement thing.

Nephrology Appt

2011-05-26T21:33:00.003-04:00

Today was my nephro appointment.

Prior to my appt, I went to the blood lab to do some blood work that I was supposed to do a couple of weeks ago of my up and coming oncology appt.

When I got to my appointment, I spoke to a fellow first before seeing my actual doctor. I contemplated emailing the home hemo secretary and telling her that I had no interest in speaking to a fellow today, but I decided to just chance it. Perhaps my doc would be the only one there...and if not, i'd simply say that I did not want to speak to a fellow. When I did get called in, I realized that the fellow I got was a doctor that I had spoken to before and actually liked.

We chatted about what was going on in my life health wise. I gave him a brief rundown about how I was supposed to have a transplant, and then the hemoglobin prevented it, prompting another visit to the hematologist, etc etc. I also told him about the pain that my avascular necrosis is causing me.

He asked me what I was doing to control the pain: I told him nothing really, which is true. While I do have the codeine and such sitting in my medication bucket, I rarely use them. In fact, I think I've probably used one maybe 2 times this year. I explained that I didn't want to become...one of "those" people who are prescribed and take codeine for a particular reason...then they get so used to the feeling of being without pain...that they become addicted to it or something. I personally don't think I'm the type of person who would abuse drugs or anything like that, but I also believe that many of the people who are prescribed medication for pain after a accident or what not don't believe that the are either. I'll admit that I have a pretty high tolerance for pain, but this particular pain is affecting my quality of life.

The fellow (his name is Simon) asked me if I had taken regular tylenol (ie. extra strength). I told him that I did, but it did not seem to help me too much. Simon suggested that I take 2 extra strength tylenols 4 times a day, and if I was in a particularly high amount of pain, I could take 1 codeine pill in a day. I agreed to his suggested regimen. We also discussed the appointment I had back in January with the orthographic doctor, and that doctor's suggestion that we hold off on surgery. Simon agreed with what I told him the doctor had said, however he said that at some point, it's a question of whether or not this pain is affecting someone's quality of life..and when I feel that is happening, it's time to demand the knee and/or hip replacement.

Simon brought up a note that was written in my chart about me possibly speaking to the home hemo social worker. The last time I was at my nephro/hemo appt, I told my nurse Rose that I would let her know when and if I wanted to speak to the social worker. I really didn't feel like it at that time. Simon asked me how I was feeling. I told him how I felt; I was so close to transplant (the closest I've ever been...this is the first time I had a specific date) and then my whole world came crashing down with this myeloma news. He told me that it might be worth talking to the social worker about it. Simon is very kind/great.

Simon left and came back with doc Richardson, my nephro. He gave Dr. Richardson the rundown of what we had discussed. Doc Rich brought up something very interesting that peaked my interest. He told Simon that he had another patient, with Lupus and renal failure, who had the same strange protein(s) in her blood that I had, and she had these proteins since 1994. She did go on to get a transplant which she had for a while. She is back in dialysis (I'm saying"is" as I am not sure if this lady is still around anymore). In her case, these abnormal proteins, as far as they were concerned, just seemed to be some strange manifestation of lupus...and did not seem to develop into anything further. Pretty interesting, huh?

When all was said and done, my rocaltrol (0.25 mcg daily) was reduced to 0.25 mcg 3 times a week. Hey, less medication is always good I think.

So now, it's the waiting game for my appointment with my oncologist again...and we'll go from there. It might be worth looking at this other lady/patient's blood work and see if there is any way it can be compared to mine. This gives me a little bit of hope.

What do our dreams mean?

2011-05-20T22:19:00.005-04:00

Last night I had a dream that was kinda weird. Well, not weird in a bad way. I think we all have dreams whereby some stick in our minds while others are forgotten just as soon as we wake up.

In this dream, my parents went out and bought a new house, so we were all packing. What was strange was the fact that the rest of the family did not have the opportunity to view the new house before my parents purchased it, so the new house would be a surprise to us. My siblings were all packed and ready to move, whereas I procrastinated like crazy. On the day before we were to move, I was in a frenzy to get all of my stuff packed into boxes as time was quickly running out. I managed to get all of my stuff into boxes on time.

The next thing I remember, I was outside of our new house. The new house seemed to be in some sort of a new development, as I recall looking to my right and seeing a number of similar looking houses that were all pretty new.

When I opened the door and entered our new house, I was floored. This house wasn't a house...it was a mansion! The ceilings were higher than I've ever seen in any house. On my left was a staircase that wound all the way into the high ceiling. There must have been at least 25-30 stairs. The house looked as if it was professionally decorated. I felt like I had walked into a custom home build by the "Extreme Makeover" team in that everything was just so beautiful and well placed that I didn't even want to touch anything for fear that I might break or smudge something.

After that, I slowly and carefully made my way up the stairs. When I arrived at the top, there was a sizable hallway with numerous doors. I walked through the hallway, looking into each door as all the doors were open. I saw the room belonging to my parents. I kept walking and passed my sister's room. I kept walking even more and saw my brother's room. I knew that my room would come up soon. I kept walking and looked into the next room. Strangely, this room was occupied by a guy that I went to high school with. What's he doing here?? I kept walking. The next room had a girl I went to high school with. Huh?? Oh, well the next room maybe? No. This room was the bathroom. I kept walking to the final door. This had to be my room. No. Closet. So, I took my blankets and my pillows and slept on the couch.

The next thing I remember is asking my Mom how far away our house was from the main road. I don't drive, so if I go out, I'm taking the bus, getting a ride from a family member, or being picked up by someone. When I asked my Mom, she responded: "Oh, it's only 3 minutes away. Come, I'll show you".

She walked up the winding staircase. Where's she going? We were just standing beside the front door..?? She opened up a window and climbed out onto a large branch from a tree. There were many wide branches all clustered together. She looked back for me, so I followed. I looked down and was scared. The branches weren't particularly sturdy, and the floor underneath the branches seemed very far away. I had to extend both of my arms outward in order to maintain my balance.

"This way!" my Mom said casually. I carefully walked on the branches after my Mom. We soon got to the end of the branches, much to my relief. What I wasn't relieved to see was a large set of monkey bars after the trees. Well, they weren't exactly monkey bars. They were those rings that you can swing across on...like the ones that used to be on our playgrounds when we were young,...or the ones you might remember from American Gladiators. My mom began to swing across the rings with ease. "Let's go!" she said happily but casually. I followed her. My arms hurt as I wasn't used to using the rings. I don't think I've been on rings (or monkey bars, for that matter) since I was in grade 5.

Finally, at the end of the rings, was the main road. Wow. Is that what I'd have to do each time I wanted to get to the main road?

At this point, I woke up. Strange.

I know that I am a procrastinator. What happens to me sometimes is I procrastinate and I procrastinate...but in the end, I usually end up getting things done just as well, if not better, than others. Perhaps that's why I managed to get all of my stuff packed, even though I started just 1 day prior.

What about me not even being able to see the house before it was purchased? Could it be that we cannot always see or predict what is in our future, but we shouldn't always be afraid of what we don't know or what we don't see? The future may actually hold something positive?

What about me not having my own bedroom? I have to say that I sometimes feel very bound and tied down by dialysis. I don't get to go on any spur of the moment trips to Vegas or Cancun with my friends. Everyone else gets to do these things...and I don't. I'm left out...and am often feeling alone in that regard.

The main road? I've been through trials and tribulations in my life. Lupus, dialysis, joint issues, and now, smouldering myeloma. I've been overdosed on IV medication by a nurse. I've had a perforation in my colon and have had to wear a colostomy bag for 6 months. I've lost my ability to walk for a period of time. All of these trials and tribulations that I've been through have, in some cases, ended the journey of life for others who have gone through the same. And yet, I've managed to get through all of these difficult times, the "unsteady tree branches and the challenging rings". The branches required mental strength and balance, while the rings required physical strength, coordination, etc. I don't know what my "main road" will be. Maybe there will be a cure for Lupus in my life time. Maybe one day God will just be like..."Ok, that's enough", and I'll just be "better" all of a sudden.

I spoke to my Dad about my dream. We discussed the 'main road' analogy. After discussing this with him, it lead me to think more about the dream and come up with what the other aspects of the dream may have meant.

Dreams that are this vivid are not all THAT common for me. Let's see what tonight holds...

Working and Lupus

2011-05-19T20:01:00.004-04:00

I know I've discussed this before, but the topic came to my mind again. I do kind of feel "over tired" from being at home all day for these last few months. I think I'm ready to venture back to work and start interacting with people besides Maury Povich and Victor Newman. I'm hoping that this feeling of "tiredness" is simply the feeling of "over tired-ness" and not perhaps symptoms of something else.

I've been working at my current place of employment since 2003 and have worked in the same position for that period of time as well. After having gone to school for Human Resources (I have a few courses left that need to be fulfilled before I can graduate), I'm pretty eager to get a position within my company in HR.

If I do that, that will mean a few things for me. In all of my years of working for this company, I do not ever recall seeing a position posted in HR that was a part time position. I wonder if my body is ready (or even able) to work a full time position. I do, however, have hardly any problems sitting at my computer for hours at a time...but then again, I'm usually (almost always) on my bed and in a very relaxed position. I don't think most places of employment have workstations or desks as comfortable as my bed, nor do I think they allow time for naps. Hehe.

At the same time, I've managed to work part time (20 hrs per week) while taking 6 courses(1 course = 3 hrs of class)...and managed to be very successful in all of my classes. I don't imagine working full time being much different...except for the fact that I won't have any homework (well, except for the homework that I'll have for the classes that I am yet to finish...and that's it!)...and I'll have weekends off!

But, before we even get into all of that...there is a very important matter to be considered. Even though I already work for the organization that I want to do HR in, I would obviously still need to be interviewed for the position. I would imagine (and hope) for privacy reasons, if I did get an interview and the HR rep spoke to my manager for references purposes, my manager would not disclose any of my health issues that she has become privy to over the past few years to the other manager. But assuming my manager does not disclose any information, how does one deal with whether or not to disclose the details of their chronic illness to whoever is interviewing them for the new job?

Well, I know here (Canada), legally, a manager cannot ask you any questions pertaining to your health during the interview process. The person with the chronic illness has no obligation to volunteer such information either...unless, of course, a certain degree of health is required as a bona fide occupational requirement However, eventually, it might be necessary to disclose such info. For me, I wonder if it would be a good idea to disclose such information prior to a job offer...perhaps, say, at a second or third interview. I think it might be wise to at least inform your new employer when a job offer has been given and papers are now being signed. This doesn't mean that you have to get all specific with them and provide them with your medical history, but you should advise them of any particular accommodations you might need and how the employer can support you during your employment.

I'm still a little nervous about the whole issue. I just don't want anything (like my health) to upset my chances of getting a position that I really want/like, nor do I want anything (like my health) to interfere with my career, period.

I wonder how other people deal with chronic illnesses and job interview/new jobs..

..Oh yeah!

2011-05-16T21:36:00.002-04:00

May 11 was my birthday. I turned 29. Gee wilikers, what am I going to do when I turn 30? The name of my blog will no longer be accurate! Any ideas for what I should call my blog when I turn 30? I suppose "The Life of a 30-Something with Lupus would be appropriate??

Haven't much to say!

2011-05-16T19:11:00.003-04:00

I just wanted to do a quick entry stating that I haven't much to say in terms of progress.

I'm going to see my nephrologist next week, and I'm not seeing the oncologist until June 7th or so.

This is still just so weird to me. I know I've seen a lot of different doctors in my life...but I never imagined one of them would be an oncologist.

Waiting on a trend

2011-04-26T17:56:00.005-04:00

I saw the oncologist again today. She basically wants me to do blood work again and see her back in June. It can get a bit frustrating waiting in waiting rooms for hours on end to be told to come back again.

At any rate, she did not again specifically say "you have smoldering myeloma", how ever she did say things like "in other patients I've seen who have smoldering myeloma, they.....blah blah". I was almost afraid to say "so, is it smoldering myeloma?"

She said that she wanted me to do additional blood work so she could see a trend of how quickly (or slowly) things were progressing. I can only assume that there has to be something actually there in order for it to "progress". So I'll have to get more blood work done in a week...then wait.

I spoke to her about her comment last time about one's immune system helping them fight cancer. She mentioned that as one of the possible problems with getting a transplant and being immunosuppessed and then developing cancer. She said that the the degree of immunosuppression is quite different from someone with cancer and someone who has a transplant. I mean, right now, I'm on 5mg of prednisone. I can't imagine what kind of dose I'd be on after transplant. She said she was going on a myeloma conference in France, so she would consult with some of the other doctors there. She also said that she would email her contacts at the Mayo clinic to see what they had to say about transplant and smoldering myeloma (hmm, I guess her saying that is also another clue that this is perhaps what I have...I guess I simply do not want to "claim" it).

That's all for now I guess. Will blog again later.

It's coming..

2011-04-23T16:05:00.003-04:00

My appointment with the oncologist is next week.

...so is my appointment with the dermatologist.

...so is my appointment with my nephrologist.

Lucky me! They're all on a different day of the week! Man, this appointment stuff is really a full time job (especially the oncologist). I'm hoping I won't have to spend like 3 hours waiting for the oncologist this time. Her clinic starts at 10am and my appointment is at 12pm, so hopefully if there IS a backlog, I won't be as far back as I was when my appointment was at 1:30pm like last time.

We shall see. I suppose I should be more concerned with what the oncologist will have to say. I am.

WML

More Waiting

2011-04-05T22:25:00.003-04:00

Can stress cause nose bleeds? Because once I managed to toss and turn myself to exhaustion and finally fell asleep last night, I was awoken at around 3am to the feeling of my nose bleeding. Luckily I had a box of tissue near by, but it's always difficult when your nose is bleeding and you can't readily get up because you're attached to a dialysis machine. I managed to get the bleeding to slow down after about 45 minutes. I heard my sister walking by my door so I asked her to grab me some ice. It stopped just long enough for me to wake up to the "END UF" alarm on my dialysis machine. I'm glad that it stopped long enough for me to sleep because I simply cannot sleep with tissue in my nose.

I went to my oncology appointment. I must say that I wasn't happy with the amount of time I had to wait. My appointment time was 1:30. At 2:30, I asked when I'd be seen. I was told that there were still two people in front of me. Huh?? How can I have two people ahead of me when my appointment was supposed to be an hour ago??

Anyhow, long story short, the oncologist, who, by the way, is a lovely lady, told me that more information is needed. So she ordered more blood tests and I will see her back in 3 weeks. Kinda frustrating as I want to know what's going on. She explained to me that some people might have up to 5% protein in the blood/bone marrow...but I happen to have 15%. The x-rays I did were normal. She is concerned that if I do have myeloma but it's the type that does not need to be treated right away (let's say, not for another 10 years or so), having the transplant and taking autoimmune drugs might be detrimental as the immune system helps the body fight off cancer. This could cause problems in the future. She wasn't saying anything specific, she was just giving me a number of scenarios.

What I don't understand is...I'm ALREADY immunosuppressed, so whether I get a transplant or not, I'm always going to be immunosuppressed due to the Lupus. I did ask questions and make statements but I did not think of that. It was obviously a concern for me and I'll have to write that down and take it with me to our next appointment depending, of course, on what she has to say.

So it will be a bit more waiting and wondering for me. I went into that appointment and thought of all the kind and encouraging words that many have shared on my blog. The power of the prayers directed towards me is absolutely incredible. I am amazed and humbled by the love I have and am receiving.

Let's keep it going. If you've read some of my previous posts, you'll have read some of the things that I have gone through...and I'm here to talk (blog-hehe) about it.

This too shall pass...

One of the scariest words I've heard

2011-03-28T14:14:00.001-04:00

Oncologist.

I have an appointment with one next week.

Oh man...please let it be something else..

Now what do I do?

2011-03-24T18:18:00.002-04:00

I'm in a bit of a daze right now and don't what to do. I feel like I don't want to stay home and just "think". I feel like I want to go back to work. I want to apply for an HR job @ my current place of work. I just want to be happy...but at the same time, I have to take care of myself.

What to do? Am I thinking of doing too much too soon?

The 4-1-1, Here it is

2011-03-22T18:24:00.003-04:00

I went to my hematologist today so he could tell me about the results of my bone marrow aspiration/biopsy.

He had me do an x-ray today. The x-ray consisted of like 15 different pictures. He also referred me to a specialist.

But essentially, my hematologist believes that...I have multiple myeloma (aka myeloma). It's what I had seen online when I googled the results he had given me the week before, but I was holding out hope that it wasn't that, since myeloma usually affects people who are at an older age. No such luck. Again, the diagnosis is not set in stone. I have to see this specialist first in order to see what he/she has to say. Perhaps there is another explanation for it.

When I looked at the symptoms for myeloma last week, I noticed that one of the mentioned symptoms was lower back pain. I hated (and hate) to admit it, and I cannot recall at this time if I've mentioned it in my blog before, but I do experience from time to time lower back pain. It's like a throbbing pain..like the pain goes and comes in like 2-3 second waves. Eventually it goes away.

In any case, right now I'm just a little out of it right now. As you might imagine, all I'm kind of thinking is...why? Why does it always have to be something else? Once I feel like I'm kinda conquering one thing...something completely brand new comes up. That said, my hematologist said (and I already knew) that any transplant talk or happenings will have to be on hold/ put off for now.

I don't have an appointment with the specialist yet, but I'm supposed to get a phone call at some point with an appointment to see the specialist.

In the meantime, I have and will continue to leave it in God's hands. Thank you to those of you who posted your thoughts and prayers, and thanks to those of you who have subscribed to my blog. If the specialist does conclude that I do have myeloma, all I can say is that I've beaten the odds and conquered many things in my not-so-long life. That trend WILL continue you. I hope you will all follow me and hold my hand through this journey.

Protein..?

2011-03-17T23:12:00.004-04:00

My hematologist called me yesterday afternoon to report back on my bone marrow biopsy/aspiration results.

My hematologist called me on my cell, which shows that he got the message I left with his secretary the day before otherwise he'd have called me at home. At first, he said "you don't want to do another bone marrow biopsy, do you?" I immediately giggled a bit and said no, as I automatically assumed he was joking, knowing the amount of pain I went through the last time (last few times to be exact). He continued after that.

"you have protein in your bone marrow...too much protein" is what he said.

About a million thoughts went through my mind. What does this mean? What do I do now? Maybe he wasn't joking...maybe he DOES seriously want me to do another biopsy. How is this going to effect the transplant?

He then asked me if I had any appointments coming up at the hospital so that I could come and see him at the same time. I told him that I didn't, however I would come in any day that he wanted me to. I'm not in school or at work or anything, so none of my other activities would be disturbed. Even if I DID have other activities...this sounds important. He said he wanted to run a few more tests. I agreed.

Again, he didn't give me any specific details as to what this means. The first thing I did after hanging up the phone was jump on google. I was a bit startled (google "too much protein in bone marrow" to see what I saw). It's important not to "jump the gun" and get all sorts of ideas into my mind before I actually see the doctor, so that's what I'm going to do: remain cool, calm, and collected.

I told my brother. I've always been my brother's side kick. He's 4 years older than me. He went into protective brother mode. He said if, heaven forbid, I should need a bone marrow transplant...he'd do that too if he was a match. He pretty much said he'd do anything. That's really sweet to me, because he doesn't know what's involved with the procedure. All he knows is that I complained to him a month ago about how painful the bone marrow biopsy was, and he doesn't know if he'll be subjecting himself to the same kind of pain.

Well, I haven't much else to say where the bone marrow results are concerned, but, as usual, I will report back where that is concerned. I will also be attending that dermatology thing next Thursday where my dermatologist wanted her colleagues to look at the whites spots on my face. I'll report back on that also.

Keep me in your thoughts...and send positive vibes to me here in Toronto...

Uhm..we don't know yet

2011-03-15T17:34:00.002-04:00

I decided to wait until today to post, hoping to have an answer about my bone marrow biopsy/aspiration. I called my hematologist's office yesterday and explained the situation to his secretary. She took my hospital number and said she would email the doctor and let him know. I was a bit worried about that as I would assume that such an email would be at the end of his "respond to" list since it would be his most recently received email.

I emailed my transplant coordinator today to see if she had heard anything. She informed me that the hematologist was investigating/trying to decipher the results of my bone marrow tests along with a hematopathologist (huh? sounds like something out of CSI Miami!) Well I guess the good news is that someonne is looking at it...but...how long is this supposed to take? What is so complicated about these results that a hematopathologist has to get involved??

More to come later..

More Whoopie

2011-03-12T23:02:00.004-05:00

So today I had the fun task of getting my passport photo taken. This process is very difficult for me. I always look in the mirror before heading out to get the photo taken in an attempt to practice my best non-smiling face. I managed to figure out a perfect face-one where my eyes were slightly narrowed and my mouth had a bit of a mona lisa smirk...just barely there.

I was totally thrown off of my game when I got to the passport photo place. I put on a full face of makeup...but I have oily skin that was peaking through the makeup. The photographer had me use a napkin to blot my face. I didn't have any blotting papers. I blotted and I blotted as I did not want to completely smear all of my makeup off. Then, when I sat in the chair and narrowed my eyes slightly, the photographer said "no! don't squeeze your eyes!" Man, now I have no idea how my picture will look...! So I tried to maintain the same mouth but keep my eyes more open. I like the "eye squeeze", as one of my eyes tends to look slightly bigger than the other in pictures. In the end, the picture came out ok. I pinned my twist out to the side to try and make a cute hairstyle, but I'm looking a little like "The Donald".

Later in the evening, I managed to find myself back at starbucks for a decaf soy vanilla latte. Thankfully, they had still had those lovely free treats...so I got another red velvet whoopie pie. The following was my whoopie pie's short existence. I saved it until I got home so I could have whoopie in bed.

The highlight of my day was a red velvet whoopie from starbucks

2011-03-10T20:11:00.004-05:00

So today I went for my regular home hemo/nephrology appointment. Nothing particularly spectacular happened there.

I learned that my bone marrow tests did show something "abnormal", but nothing that my doctor could decipher (as previously mentioned), so I'll still have to wait where that is concerned.

Ugh, I was so annoyed when I was waiting for my appointment in the waiting room. There is this other patient that I saw in the waiting room the last time I came to clinic. He's one of those guys who kinda try to show off and be your friend or something...or try to impress you. The last time I was at clinic and he was there, he was with his friend. Out of nowhere, he says "man, I wish I brought my walkman (yes, he said walkman) so I could listen to some BOB MARLEY!!!" Yes, he said it so loud just to ensure that I heard him. Then, he started singing a Bob Marley song. Guess what? I DON'T CARE. Maybe he thinks singing Bob Marley will be his "in" to be friends with me? Wrong. THIS time/today, while in the waiting room, a friend of his came to join him. After a few minutes of conversation with the guy, BM Sing along says "they were playing Bob Marley a few minutes ago!" and starts singing Bob Marley again. Really? Shut up please.

Some other patient walked in that apparently knew this guy. The Bob Marley sing-along guy says to the patient "Man, I totally lost your number!" and pulls out his phone. The other guy says "yeah..I've just been really busy. I'm busy all the time nowadays"-aka: I do not know why I gave you my number previously, but I'm glad you lost it because I'm definitely not giving it to you again. SMH.

Then after my appointment, I was sitting at a desk filling out some survey that home hemo was making everyone do. When I was sitting there doing it, Bob Marley sing-along came by and sat in a chair near me. He started whistling. It was highly annoying. I immediately picked up my purse, jacket, and survey, and headed for another chair. As I was picking up my stuff, he said something...I think it was "oh, do you have to wait around again?" I said no, and walked off hurriedly. I get the whole thing of...let's try to be friendly with other people who are in my position..but I don't like it when people do this by being annoying. Stop being annoying!

Anyhow, I went downstairs and my father and my transplant coordinator where sitting in starbucks. The line was abnormally long because they were giving away free treats wihth every drink purchase. My tranplant coordinator was nice enough to buy me a hot chocolate. My free treat was a small red velvet whoopie thing filled with icing. It was delicious.

Now...(hopefully) only a few more days to get the full scoop on this bone marrow biopsy/aspiration...

Appointment Tomorrow...

2011-03-09T18:11:00.001-05:00

..with my nephrologist. We'll see what Doc Rich has to say...

Seriously?

2011-03-08T18:53:00.002-05:00

...the only doctor (my hematologists) who knows how to read my bone marrow results is out of town until next week. I asked if another hematologist could read my results and I was told that it would be best for MY hematologist to read the results since he is familiar with my case.

I am convinced that there is no guarantee that I will be at the top of his priority list when he returns.

My transplant is waiting on his results.

My place of work is (rightfully) wondering what the status of my surgery is.

A happy camper I am not.

That is all.

Hemoglobin is up

2011-03-02T18:38:00.006-05:00

I was at the hospital today. I had a bone density scan this morning at one hospital, then it was onto the shuttle bus and off to another hospital (with the results of the bone density) to see the osteoporosis doctor. While in between appointments, I went to go hang out with one of my hemo buddies. But prior to that, since I was near my home hemo unit, I did go and get my nurse Rose to do a quick cbc for me.

So after a fun chat with my in centre hemo buddy, I went and saw the osteo doctor. I was happy to learn that my bone density showed improvement. And I obviously haven't had any new fractures since the last one I had a couple of years back. That's great news.

My nurse promptly emailed me today to tell me the results of my cbc. 103 or 10.3 for my American friends. I'm pretty happy about that since my hemoglobin was 80-something previous to that. I am hoping that this will be enough to proceed with transplant (and by "proceed", I mean..let's do it QUICKLY. Like, TOMORROW. LoL). I did call my transplant coordinator immediately upon receiving the results from my nurse. She usually calls me back immediately, but she didn't this time. I'm guessing/hoping it's because she wants to speak with the doctor. Cross your fingers for me.

In an attempt to make myself feel better (prior to getting my hemoglobin results, of course), I went to curl ambassadors to get a wash and a trim. I was happy to see that my hair had gotten much bigger since the last time I was there in September. I also took pictures of the back of my head. Coincidentally, the last time I took pictures of the back of my head was in March of 2010. Below are pictures that show the progress. I'm pleased with the results and hope to continue growing my hair out to lengths I have never experienced before...! I really love curl ambassadors. My stylist, Angela, is so personable. In fact...she's lovely. And I'm simply not used to going to a salon and being the only person that my stylist is focused on. I remember back in the day when I used to relax my hair...and I'd be sitting there with a relaxer burning the crap outta my scalp while the person doing my hair was off doing something else to someone else's hair! But at curl ambassadors, I got there at like 12:20 (my appointment was 12:30), I was seen immediately, and was done by just after 1pm. That includes a wash, trim, condition, styling, a sit under the hair dryer, an additional trim/shaping, and a bit of blow drying to stretch my hair. Unheard of for me! That would take about 3 hours (if I was lucky) at the salons that I used to go to! Smh...I feel spoiled! :)

That's all for now. Let's hope for good news where transplant is concerned..!

Weird White Spots

2011-02-28T12:50:00.005-05:00

As I mentioned in another post, I had noticed some weird, confetti-like white spots on my face. I don't know where they came from or what they are from.

I kind of stopped noticing them. Once you live with something for a certain period of time...you simply just stop noticing it. Also, the lighting in my bathroom isn't the greatest. Either way, I usually wear makeup when I go out unless I'm super lazy.

The other day I went out with my Mom. Since we were already going to be out, I asked my mom if she did not mind taking me to get my eyebrows threaded. Since I've been feeling a bit down and out with the transplant being postponed, I thought that perhaps getting my eyebrows threaded would make me feel a bit better. It's kind of like...putting on really nice clothes and a full face of make up just to go to the grocery store. So when we got to the threading place, the nice lady who was doing the threading mentioned the spots on my face. I didn't wear makeup since I knew I'd be getting my eyebrows done.

It reminded me of my appointment with the dermatologist back in September. She didn't know what the spots were, but said that she did not think it was vitiligo. She took me into a dark room and put a black light on my face. Since the spots didn't glow under the black light...she didn't think it was vitiligo. Also, she mentioned that the spots would be more blotchy and perhaps bigger as opposed to little confetti like dots.

After having the lady threading my eyebrows mention it, it became more apparent how many there are on my face when I looked in the mirror when I got home.

Note: the bigger white spot on my cheek is just the flash. The tiny white spots is what i was trying to capture in the picture.

This is just a picture of my right cheek, but the spots are all over my head, my chin...everywhere. Has anyone ever heard of or seen anything like this? I haven't started taking any new medication...but I wonder if its that. My pharmacist looked at all of my medications and did not see anything that would warrant the appearance of such spots on my face...

Oh, I should also mention that these spots appear in one other place. In a spot where...well...a spot that is normally covered up by pants and underwear, and is not open for public viewing (Pun intended with the word 'public', if ya know what I mean)

o_0

Back from Doc Fortin's...

2011-02-24T15:25:00.004-05:00

I went to see my rheumy Dr. Fortin today. I was really sad to learn that he's moving to Montreal permanently and will therefore not be my rheumy anymore! He's a great doctor and I've had him since...the early 2000's?? Let's just say he's my "main man" and I'm going to miss him a lot. The thing is...he lives on Montreal already. He commutes back and forth from Toronto to Montreal all the time for clinic. His family is in Montreal. He has been invited to start a lupus clinic in Montreal which is direly needed there. *sigh*...he will definitely be missed. My last appointment with him will be in June...then after that...he's gone. Nuts.

My c3 compliment is a little low, but my c4 seems to be within range. That sometimes means lupus activity...it also could mean some sort of lingering infection. I know I dealt with the flu and stuff late last year. I'm hoping its that and not anything to do with a lupus flare. If my hemoglobin somehow goes up and my lupus flares right then and there...I promise you...I will FREAK RIGHT OUT.

Anyhow, in happier news, I pained my fingernails....

...and I got a new watch.

That is all. LOL

Why does my butt still hurt??

2011-02-19T18:36:00.000-05:00

It has been almost a week since my bone marrow biopsy and aspiration. As I remembered, it was terribly painful. Luckily for me, my friend came with me and held my hand during the procedure. Also luckily, I did not scream or cry like I did the last 3 times. But I tell ya, it is PAINFUL. Like the last time, I received some local numbing at the site, but that's about it. The doctor said the sometimes they give ativan, but by the time it kicked in, it would be time to leave anyhow. Um..anti-anxiety drugs? I'm not anxious...it's f***ing painful..!!! LOL.

In the end, I made it through. As the numbing started to wear off, I did have pain in my lower back area where the biopsy took place. It took place on a Monday morning, and it is now Saturday evening...and it still hurts! It feels like a bruise...like what a fall on the ice would feel like. I'm hoping it will subside in the next couple of days.

The doctor said the results of the procedure will be back in 1 week, so hopefully I'll have some answers in the coming week.

Until then...bye for now!

Bone Marrow...Yikes!

2011-02-12T14:42:00.004-05:00

Only two more sleeps until searing pain...ugh.

My bone marrow tap is going to be done on Monday morning. How wonderfully ironic that Feb 14, a day of "love", will be a day of searing pain for me. I'm still crossing my fingers and hoping that my doctor will take my previous request into serious consideration and figure out a way to do a bone marrow tap while putting me through the least amount of pain possible.

I did a repeat hemoglobin earlier this week. Thankfully, it went up from 81 to 89 (or 88, I can't remember. In U.S. terms, that is 8.1 to 8.9). I'm glad that it seems to be on an upward trend. I hope that means that the venofer that I used is working.

I'm happy and lucky that my good friend is in town visiting from Holland. She will be there to hold my hand while I'm getting the bone marrow tap done. Since it's getting done in the hospital, we can easily head to emergency and get my friend's hand casted since it will certainly be broken by the time I squeeze the crap out of it.

Wish me luck...

Bone Marrow..comin' right up

2011-02-07T19:17:00.002-05:00

Now that my transplant has been put on hold due to my low hemoglobin, it is definitely necessary to do something to find out why this is happening. I had emailed my nurse last week to find out what the results were of the blood test my doctor had me do the week before. It was some sort of B-cells test. My doctor emailed my hematologist and he has suggested that I do a repeat bone marrow tap.

*sigh*

If you've read about what I've typed about bone marrow taps before, you'll know that I've said repeatedly that bone marrow taps hurt like a....well...they hurt. Imagine an insanely huge needle being forcefully jammed into your hipbone (or into your lower back), then having the bone marrow drawn out....eglajhwlghe I don't even wanna talk about it. But alas, whatever I need to go through to find answers, I will most certainly do.

During an appointment with my hematologist, I've asked him if it was a possibility to have some further sedation done while getting bone marrow tapped. A numbing injection is used, but it seems so ineffective, I have to wonder how much MORE it would hurt had I not gotten the injection. He said that we'd "figure something out, but 'we don't usually do sedation'". I have to wonder about that, because I know that if I were at, say, Sick Kid's Hospital, not only would they sedate the crap outta me, but they'd probably put a Wii or a Playstation 3 covered in vanilla ice cream, chocolate sauce, and pepperoni in front of to play while lying on a sandbag waiting for the bleeding to stop.

This bone marrow tap appointment is supposed to occur in the next week or two, so i'll be updating again with that. Wish me luck..

Sad Face

2011-01-31T23:43:00.001-05:00

It's kind of sad knowing that today is January 31. Theoretically, it should have been only 9 more days.

Sooo upset over this.

Twitter?

2011-01-26T01:26:00.001-05:00

So I joined twitter tonight. If you have twitter, follow me and comment on this post with your username if you would like me to follow you too.

I figure twitter will be easy to send quick updates to. My twitter username is miz_flow.

:)
Sent from my BlackBerry device

Feeling Down and out

2011-01-22T00:02:00.001-05:00

I took the winter semester off of school mostly in anticipation of a transplant. If I wasn't anticipating a transplant, I would have taken the semester off anyways. I am hoping that my dream HR job will come about at my place of work.

I got a bit of disappointing news the other day. I felt like I was on the right track where transplant is concerned. But I got a phone call from my transplant coordinator advising me that my hemoglobin dropped...again. Last month it was 106. Early January, 89. Now, 81. What the hell is wrong with my hemoglobin? Why does it keep doing this to me? Why can't it just stay up long enough to get this transplant done, and maybe the new kidney will help bring my hemoglobin up?

When is it gonna be my turn? When is it gonna be my turn to be free from the shackles that are dialysis??

I spoke to my brother and my transplant coordinator told him that I'm going to have to see some kidney specialists to see what the deal is. He told me that these appointments/arrangements are going to be mad ASAP. I'm not sure what ASAP means, but what I do know is that I need something positive to happen soon where this transplant is concerned. I'm tired. Tired of dialysis. Tired of setting up machines. Tired of recirculating if I have to go to the washroom in the middle of the night.

I guess I will have to wait and see what next week brings. I pray to God that it will bring good news.

Sent from my BlackBerry device

Ethics and Back Pain

2011-01-15T19:13:00.004-05:00

Geez does my back hurt. Its my lower back, and its throbbing pain. Is it my kidneys? Maybe they're bored and asking for friends. Perhaps sometime in the near future I can introduce a new kidney to them that they've never met before..? :)

Transplant is hopefully only a few weeks away. Since I passed the NKE, my plans are to go to school on a part time basis and look for full time work @ the bank I work for in a HR position. It is important for me to get some HR experience so that I can submit my experience to the HRPA after 5 years. They will review my qualifications, then decide if I am able to obtain the title of CHRP (Certified Human Resources Professional). I was happy and sad at the same time about 2 weeks ago when I went online and saw what was essentially my dream job posting online. It was an HR Coordinator position in the same building that I work in. the job duties are exactly what I'm looking for. The only slight thing that I would change is the fact that it is a contract position, whereas the job I have right now (not an HR job) is a permanent position. My resume is up to date and ready to be submitted...but I cannot. I am waiting for a transplant.

The kidney transplant is obviously more important that any job at this point in time. The kidney transplant will put me in a position where I'll actually be able to wake up each morning to go to work and not worry about disconnecting myself from a dialysis machine. I just wish that there was a way that I could do both. It's not everyday that the perfect job posting in the perfect location comes up. Well, I'm sure a wealth of opportunity will be available to me once I'm transplanted, healthy, and happy.

I put the word "ethics" in this post's title. I did this because I know some people, knowing that they were going to have another commitment (ie. surgery) would still apply for their "dream" position, get the job, then 2 weeks they would be attending to their other commitment. To me, that is unethical. I just cannot wait for this transplant to happen so I can go on doing the things that I want and the things that I love.

:

I was hoping...!

2011-01-13T20:44:00.003-05:00

Yay, this is my 400th post! ;)

I had a clinic appointment today with my nephrologist. The fellow I saw was Dr. Curran. I dunno...there's just something about him...he's very personable, funny, and smart. One of my favourite fellows to date.

Anyhow, I got another blood pressure med to help my mysteriously rising bp. I stopped all blood pressure meds shortly after starting home hemo, but for some reason my blood pressure has been rising. I'm hoping that my body will go back to "normal" and the blood pressure will go down. I also got Avamys to help with my sinus headaches. It's a nasal spray. Man I hope it works for me like it did last time I used it (back when I had that horrid ear infection) because these headaches essentially render me useless for their duration and nothing seems to really help them.

After that, I got some blood work done and went to get a chest x-ray done as I still seem to have a bit of wheezing going on. We'll see if anyone calls me tomorrow to report on results. As they say..no news is good news.

I went to see my transplant coordinator for a couple of reasons. First of all, I wanted to show Julie my stomach scar from when I had a perforated bowel. The post to the pictures of my stomach scar is HERE. I wanted to ask her if she could point me in the right direction to have the scar fixed a bit as my appointment with the plastic surgeon ended up being a bust (he said he did not want to do the surgery as I was on prednisone/MMF, but when I was off them he'd be happy to do the surgery. Um...I have Lupus and don't plan to be off of those medications any time soon... ) So she's going to look into that.

Also, Thursdays are supposed to be the day that the transplant doctors have a meeting, look at your file, etc. and decide if you are cleared for surgery. The transplant doctor was not in last thursday, so the meeting would take place today. Would you believe that they got too busy and did not have time to discuss me? :(:( but they have PROMISED to make me a priority for next thursday's meeting...so hopefully I'll have a DEFINITIVE answer by then. After my file is reviewed and assuming everything is okay, the next step is...a DEFINITE surgery date! :)

Again, well keep my blog posted where that is concerned.

school has started...and i ain't goin!

2011-01-10T22:36:00.001-05:00

it feels weird not getting up and going to school since school started today. In actuality, I'll be going online, most likely on Friday, to drop all but two of my courses. Transplant is eminent in the coming weeks, and taking a full course load would definitely be silly. I'm just going to take a couple of online courses and go from there.

I will keep my blog posted for transplant stuff...!

Where have I been?!?

2011-01-03T21:46:00.005-05:00

I've been away for a while. I've been super busy with school and with this stupid flu (mostly the flu). It was one of those situations where you kinda get the flu...then it gets a bit better by itself...then it comes back in full force..!

I've been on a 10 day bout of antibiotics (Avelox 400mg for 10 days). When my family doctor listened to my chest and my back, he said he could hear the weezing in my lungs. I could feel it when I breath. I will be done the antibiotics in the next few days.

The problem that has been bothering me the most are these crippling headaches. Based on where the pain is, it definitely has to be a sinus headache. It's painful to a point where I cannot sleep, I cannot lie still, I cannot stand up... I cannot do anything. Icepacks help mildly, but not really. Having my mother massage "Robb" on my head helps a bit.

I went to see the hematologist today (for transplant clearance reasons). I had to do bloodwork first, then wait about an hour or so for that bloodwork to come back so the doctor could look at it. So I decided to go to home hemo and see if I could be seen by a doctor in relation to my sinus headaches. My blood pressure has also been acting wacky. It's been no lower than 145/98. I believe my doctor is relating the headaches to the blood pressure...but based on my ear infection fiasco in Jan/Feb/Mar of 2010...I'm thinking its another sinus headache thing. At that time, I went to see an ENT who gave me some nasal spray. This time, I just went to Walmart and bought some over the counter nasal spray. I hope it helps as I've been using it for about 2 days and am still getting headaches. I've been off of work for about a month.

My dialysis machine is screwed up. I keep getting "no water" alarms as I'm trying to do my opening rinse. Something that should take about 7-8 minutes looks like it's going to take about 45. Time to call tech..

In good news, that HR exam I wrote back in October... I passed! I am officially a CHRP Candidate. I'm quite happy about that. All I gotta do now is hopefully get my kidney transplant, then start looking for HR job postings within my company and hopefully in the same building too. I just remember how stressed I was when I walked out of that exam...thinking about all the hours I wasted studying for it. Thinking...who do I think I am taking the exam without even finishing school or without practical work experience. But when I saw that I got an A on the exam...I couldn't be happier.

My Christmas and New Years were both quiet. On Christmas day I was so sick with such a bad headache that I spent most of the time in bed, in tears, just praying that I could simply fall asleep so that the pain would go away. I had short little naps-3o to 45 minutes tops. All of the Merry Christmas text messages and BBMs were sure to keep me awake.

For New Years, my Mom and Dad were going to go to church. My sister went out with her friends, and I was going to stay home. When my Dad realized that I'd be home alone, he decided to stay home with me. I appreciated that...staying home alone in such circumstances is just not fun.

Anyone, I'm sure my machine has been rinsing for about an hour and I still haven't gotten the "system ready" beep. This annoys me. I may need to turn the thing off and on again.

Well, that was my quick update. I hope you all had a wonderful Christmas and a great New Year! I will keep up to date with transplant stuff as (I hope) this hematology appointment will be the last doctor I will need to "approve" my transplant.

Flu-like symptoms

2010-11-29T20:49:00.004-05:00

Man have I been hacking out a lung for the past week or so! I literally slept ALL day yesterday. I woke to eat and sleep. I also woke up in the morning only because my dialysis machine was done and it was time to disconnect.

I'm feeling a wee bit better, but still definitely under the weather. My number one priority is to get better as soon as possible....don't want any silly colds messin' up my transplant plans..

Vlogs?

2010-11-29T20:45:00.002-05:00

I used my aeroplan miles to get myself this nifty little camera. Maybe when I learn to use it, I can make some vlogs to post to my blog..

:-O

P.S.: the pictures of my new video cam were taken with my blackberry torch :)

Suffering through Flu-like symptoms while kicking people out of my group

2010-11-24T22:51:00.003-05:00

As I type through violent bouts of coughs, sniffles, and achyness, I'm thankful that I have a great group member for my Coaching assignment that is due on Friday.

As it stands, my group consists of one other person-Sandra. Most of the other groups in the class consists of 4-6 people. This is a 16-20 page report that we are responsible for producing. This report is about performance management and coaching practices of at least 2 different organizations.

My group did not start off as a group of 2. It started off at a group of 3. But, I had the VERY unpleasant task of having to eject one member out of the group. We all became a group 2 weeks ago. Sandra and I were desperate to get a third group member to reduce our already packed workload, and this third individual did not have a group at all. So after a brief discussion, we decided to allow the third person into our group.

It began to go downhill when the third person did not come to class the following friday. When I sent the person a email via my blackberry, the person responded by saying that he/she was on his/her way. I looked at my watch. 1:30pm. Class started at 12pm. You do the math.

We left class early as the remainder of the class was allotted to work on the assignment. Without any of the third member's work, doing any in-class work would be impossible. What a let down since the assignment was due the following friday. I sent the group member another email at around 2:45, and the response I got was the fact that he/she was still on his/her way. What? That indicated to me that this person probably hadn't even left their house when I sent the first email. Great.

So on the weekend, I set up a google doc page and shared it with my other two group members. The third group member wrote a bunch of stuff on the google doc. After 30 minutes spend editing just 2 paragraphs, I knew there was a problem. I barely understood what the group member was trying to say, and what I did understand was simply not pertinent when it came to the assignment. I asked the group member to send me the performance management document that they were drawing their information from...and they agreed to send it ASAP.

After about 30-45 minutes, the group member responded and said they could not send it now because they were still at school and could not find the performance management document. I sat there, staring at my blackberry, wondering why the group member didn't say this when I initially asked for it. That's ok... I responded and asked them to send it AS SOON as they got home. They agreed and promised to send it.

I was less than shocked when the next morning came and went and I still hadn't received the email of the performance document. I emailed again, just after 12, asking for the document. No response. I emailed again, this time stating that if I did not receive the document within 30 minutes, we were no longer going to use the organization that he/she was working on, and I had another performance document from another company, and I would start from scratch using that company.

An hour had passed. I began working on the assignment with the new performance document. After all, who knows if this group member was going to respond, and I had only a few days to come up with a whole lot of pages of information.

A few minutes after I had started, the group member emailed me and said that they would email the document to me shortly. I responded by saying that I did not want it, and I was starting the assignment with another company. The group member proceeded to send me a partial, non-sensical document anyways, about 40 minutes later.

At this time, I had emailed my prof and explained the situation. I told him that it was my plan to eject this person from my group. He responded and said that I should inform this group member that they'd be responsible for handing in an assignment on their own. After I essentially received the "go-ahead" from the prof, I very politely advised the group member that Sandra and I would be doing the assignment ourselves and no longer required his/her work. I removed the group member's access to the google document to ensure that they did not try to delete the work already done by Sandra.

The group member responded, asking for the work that he/she had done, since it was in the google document that they no longer had access to. I compiled the information and put it into a word document. I had even saved the group member's work, pre edititing by me, into a word doc, but at the last moment I decided to send the already partially edited part with the introduction I had created.

Before I had a chance to respond, the group member lashed out a bit, saying it was partially my fault as well as Sandra's because we did not wait after class for ever for them to show up *rolls eyes*. The group member also stated that their blackberry is slow which is why they did not respond quickly enough to my 30 minute deadline. I quickly shot that excuse down, as I have the exact same blackberry and mine works fine. I also reminded them that I had asked for the document the day prior, and it was technically over 17 hours late.

In the end, Sandra and I managed to bang the project out, in spite of the fact that we both have much to study for and much due, and in spite of the fact that I am about 5 minutes away from hacking out one of my lungs. Go team awesome!

So that's my story of having to eject a member out of my group. It's not fun...but definitely necessary. As the day went on I felt a bit bad and I told my father about it. He reassured me and reminded me that it was necessary for everyone to pull their own weight. What I had asked for was not unreasonable-I simply asked for an email of the performance management tool. If that proved to be such a chore...that's definitely not a good sign.

Oh, I forgot to mention. Prior to ejecting the group member, on Sunday the group member said that they could not work on the assignment anymore because they had an assignment due the next day. Ok. The next day, they once again said they had an assignment due, but if I wanted, they would stay up ALLL night to work on the assignment. Nice attempt at trying to make me feel guilty.

Didn't work.

Colonoscopy and endoscopy results

2010-11-21T23:16:00.001-05:00

On Tuesday Nov 9, I had my colonoscopy and endoscopy done. As promised, the doctor drugged me up quite nicely :). Unfortunately, my gag reflex got the best of me. Even though I was heavily sedated, I was still very much awake and conscious of what was going on around me.

When the tube went down my throat, I was gagging like crazy. Gagging to the point of tears in fact! The doctor and nurse both soothed me and repeatedly told me that it would soon be over...which it was.

Next was the colonoscopy. Honestly...I don't remember much about the colonoscopy (and that's an excellent thing). All I really remember about that is the doctor telling me to look up at the monitor that showed my colon, and then being in the recovery room. My sister came in shortly after.

When the doctor came in, she told me that the endoscopy showed that I have some ulcers on my esophagus (eep!). To remedy that, she presecribed me some drugs which will replace the omeprazole. Can't remember what they are called, but it's something like pantoprazole I think.

So now, to take my meds. Here's to hoping these ulcers clear up soon...

Sent from my BlackBerry device

Swollen knees suck

2010-11-21T23:07:00.000-05:00

Avascular necrosis at its finest. You'll notice that the knee on the right is MUCH larger than the one on the left. And yes, its painful.

Sent from my BlackBerry device

The Blood Work Debacle

2010-11-04T22:23:00.004-04:00

I cried.

I felt ill.

My world was crashing down on me.

I've said it once, and I'll say it again. If a transplant is not meant to be for me, then surely God has another plan for me, and I accept that. But I wish He would just show me some sort of definitive sign!

Well, watch this.

I went to see my rheumatologist last Thursday. My appointment was supposed to be at 10am. Appointments are rarely on time...and as someone who has gone to many a-appointment in my life, I've grown to accept that. But this time.. I was busy. So, I went up and asked when I could expect to be seen. The secretary told me that I was next. Since I had been waiting for so long, I asked the nurse if she could give me my blood requisitions and I could do my bloodwork now instead of later. She took the requisitions into the doctor that I'd be seeing before my real rheumatologist, had her sign the reqs, then gave them to me so I could do the bloodwork.

I went to do the bloodwork. Total amount of time that I was gone- about 5 or 6 minutes. At this point, it was already after 11am. When I came back, much to my horror, the secretary told me that the doctor took the next patient.

What?

She KNEW that I went to do blood work, and she (she=the doctor) KNEW that the clinic has it's own phlebotomist (Sister Esther) so why would she not wait a few minutes for me when I just waited almost an hour for her???

I was livid. I told the secretary to book me another appointment because I was leaving. I wasn't leaving necessarily because I could no longer wait, but I was really angry. Well, aside from that, if this doctor took an hour with the last patient, how long would she take with this one that she just took in?

"Please don't leave!" the secretary implored. I asked her how long the doctor would take..knowing that she'd have no idea. I knew I wouldn't stay unless I was going to be seen by a doctor in the next 5 minutes. She told me the next available appointment wasn't until February 2011. I told her to book it.

As the secretary very slowly and reluctantly booked the appoinment (she was clearly trying to think of what she should do to get me to stay) my REAL doctor walked out. Much to the secretary's relief, she told the doctor what had happened, and he quickly told me that he'd see me directly. Thank goodness.

So he and I went in and chatted. I told him that I was worried about my blood results and apparent trend that seemed to be leading towards a lupus flare.

When the doctor looked at my bloodwork on the computer, he saw something very peculiar.

Get this.

There were TWO sets of bloodwork for me on August 12. 1 set was normal (what my bloodwork usually looks like) and one set that was completely off. If I had drawn blood twice that day (which I hadn't) it would have been impossible for someone's blood work to change so radically.

The verdict?

All this time that I've been stressing, making myself ill, crying, etc..I had been crying over blood work that had incorrectly been uploaded to my profile. Those blood results belonged to someone else.

My doctor said that this was the first time he had seen such a thing in his whole career as a doctor.

On one end of the spectrum..i'm ECSTATIC that I'm not currently having a lupus flare. But on the other side...why me??

:S

Time to Exhale..!

2010-10-24T21:36:00.004-04:00

I've had a rough couple of days! I studied hard during the week and especially on Thursday for a Coaching and Performance Mgmt exam on Friday. I studied until about 10pm, set up my dialysis machine, and went to sleep. I woke up at around 4am and I wasn't feeling good at all. I felt totally nauseated. I recirculated my machine and got up to go to the bathroom. I got there just in time as I got that "watery mouth feeling" that you sometimes get when you're about to throw up...and I did. I sat grabbed my cell phone and called my Dad (aka the house). I heard the phone ring a few times as I waited for Dad to pick up.

He must have seen my number on the call display as I didn't say much when he answered the phone. All I could do was throw up. He quickly came upstairs and comforted me. He made me a hot water bottle, tea, and gave me some gravol to take. He encouraged me to re-connect myself to my machine. I did, but about 30 minutes later I had to go to the washroom again. I decided to just wash my blood back and forget about dialysis for the rest of that night.

My stomach was in knots. I didn't eat much out of the ordinary, except I ate lunch at a place across the street from my school. But I would think that if that lunch were going to make me ill, I'd have felt ill before 4am in the morning. I know this because I did a gastric emptying test before...and I've been told that I actually digest food slightly quicker than an average person.

That said, I had to miss my coaching exam on Friday and work on Saturday. My prof for that class was very understanding as I knew he would be. After all of the stress of school and the NKE, I'm just glad that this week is reading week, so I can catch up on assignments, maybe catch up with a few friends...but mostly just RELAX!

Great News!

2010-10-21T21:47:00.004-04:00

My bro is cleared for transplant! Now, all I have to do is get MYSELF ready, aka stop dropping my hemoglobin and hopefully simmer down what appears to be an up and coming lupus flare...and I'll be all good..!

More good news: the 5 doses of Venofer seemed to work! My iron saturation is at 44%, and my hemoglobin went up from around 66 (6.6) to 86 (8.6)! I'm really hoping that this gastroenterology appointment in early November will find something and hopefully stop any bleeding that may be occuring in my stomach.

Hurrah for my brother..!

30 Things You May Not Know About My Illness

2010-10-14T12:49:00.003-04:00

I saw this on fellow blogger Melanie's blog and I thought i'd fill it out also. It's very telling.

1. The illness I live with is: Lupus, end stage renal disease, avascular necrosis, (what appears to be) chronic anemia.

2. I was diagnosed in the year: 1996

3. But I had symptoms since: I didn't notice anything until just days before I was diagnosed.

4. The biggest adjustment I have had to make is: Not being able to be involved in everything. I'm still not used to saying "No, I cannot do ____ because I'm tired/sick. I was diagnosed in November of 1996, and in my school year prior to that, I was class president, class valedictorian, and involved in every sport/aspect of school. I went from 100%-0% in just a few months.

5. Most people assume: That it is probably not as bad as it is because I do not really let on that I'm sick or in pain when I am.

6. The hardest part about mornings is: Waking up on time to disconnect myself from my dialysis machine and get to wherever it is that I'm going on time, whether it's work, school, etc.

7. My favorite medical TV show is: Trauma: Life in the ER. I love the dramatizations as well as the bizzarre cases.

8. A gadget I couldn't live without is: ~~My Crackberry.~~ My blackberry.

9. The hardest parts about nights are: Trying to actually fall asleep. I think there might be an underlying fear in my mind that I'm going to turn around/turn over and rip my needles out of my arm or rip the lines off my dialysis machine.

10. Each day I take: a wheelbarrel full of medication.

11. Regarding alternative treatments: I think it's always great to try as long as it's safe and doesn't conflict with my other treatments/medication.

12. If I had to choose between an invisible illness and a visible one I would choose: It's hard to say. With an invisible illness, because people cannot physically see it, sometimes they cannot empathize. It's hard being on the bus and being forced to stand up for someone with a broken foot because no one else will get up and you don't want to look like a jerk. At the same time..I really don't want to have a visible illness whereby people will look at me and feel "sorry" for me.

13. Regarding work and career: There is no way that I am letting Lupus or anything else get in the way of anything I really want to do in life.

14. People would be surprised to know: Well, most people don't know that I have a dialysis machine sitting in my bedroom, nor do most people even know I'm on dialysis at all. If they do...they don't know or understand the gravity of it.

15. The hardest thing to accept about my new reality is: That I have to slow down and not do things as frequently/quickly as I used to.

16. Something I never thought I could do with my illness was: Travel, especially with renal failure. It was only a few years ago that found out about travelling while on dialysis. While it's definitely not ideal, it is much better than staying at home all the time.

17. The commercials about my illness: What commercials? The one that shows a million faces? It does not portray this devastating illness at all.

18. Something I really miss doing since I was diagnosed: Doing things on a whim..now, everything has to be planned. No spur of the moments road trips or anything like that. That and doing physically demanding activities.

19. It was really hard for me to give up: Sports. With my joint pain, I cannot run, I cannot play basketball, etc. Very devastating for me as I've always been an active person.

20. A new hobby I have taken up since my diagnosis is: Blogging and Cake decorating :)

21. If I could have one day of normal again I would: Go for a jog/hike.

22. My illness has taught me: To be patient with myself and others.

23. One thing people say that gets under my skin is: That I need to take care of myself. Really? So washing down my medication with a bottle of Jack Daniels isn't considered taking care of myself? SHADDAP!

24. But I love it when people: Give me hugs. I love hugs.

25. My favorite motto, quote, etc is: What you cannot change, don't let it change you. My Daddy taught me that one <3 .

26. When someone is diagnosed I would like to tell them: I've been there. Just be strong, be optimistic, and don't give up.

27. Something that has surprised me about living with an illness is: How much control you lose. I couldn't believe how weak I got and how much my body changed because of it.

28. The nicest thing someone has done for me when I wasn't feeling well was: Visit me with food. Not much beats that.

29. I'm involved with Invisible Illness Week because: I actually didn't know about it until now. I guess I'm late! :\

30. The fact that you read this makes me feel: Really good-and I hope it gives you a peak into my life! :)

xoxo

Managing

2010-10-14T12:21:00.004-04:00

The end of the week is near and it couldn't have come any sooner. I administered my last dose of venofer yesterday. I hope it is working somehow. I still feel pretty tired.

Other changes that are occuring in my body are worrisome. I don't understand why my blood pressure is high (150/90-ish) and why my ankles are periodically swollen. I am almost afraid to do repeat blood work as I don't want to see my lupus tests. If you have an illness...you know how it is. You want to be well all the time...and if you're not well you want to be better. But, that said...I'm just not ready for bad news.

Anyhow, I'm in E-Business class and really shouldn't be blogging. Check in later.

Missing Jackets..

2010-10-05T18:31:00.000-04:00

I don't know if I mentioned this before, but during the first week of September, I was about to head out the door on a Saturday morning to go to work. I noticed that it was chilly outside, so I went to grab my leather jacket. It was no where to be found.

I looked high and I looked low. Nowhere. I know that I had it hanging over a chair in the dining room. You see, I don't put my jacket in the hall closet. It is packed full of jackets belonging to my sister and my mother. I have maybe 2 or 3 other jackets in there, one of them being a vest. I had another leather jacket that was in there, but it got scratched up by metal hangers and ended up on the floor. And, on top of everything, if I put my jacket in a particular part of the closet, it ends up getting moved elsewhere, possibly because I've invaded the space of another closet user. So, for these reasons, I don't bother putting my jackets in there.

I know my sister had moved my jacket to another table because she was expecting a nurse to come by the house to assist her with her medication. I was already late for work, so I grabbed another, not so warm jean jacket and headed out.

When I got home, I continued to look for my jacket. Oh, I know! If I look under my two winter jackets, also hung over dining room chairs, I'll definitely find my leather jacket.

Wait...where are my TWO WINTER JACKETS??!?

Yeah, that's right. All three of my jackets went missing. What the heck is going on here?? My mother and father essentially tore the house down looking for my jackets, as my low hemoglobin did not allow me to search in a way that I wanted to. Couldn't be found. I do remember back in the summer my father taking a few bags of clothing to the goodwill. I find it rather impossible that my jackets could get caught up in those bags...but anything is possible.

So, I spend a lot of money on my jackets. I consider them an investment. I don't plan on replacing them anytime soon, and, especially my winter jackets, I need something that will keep my extra warm as I already have an illness and don't need or want to expose myself to the elements without being sufficiently warm enough. Then, in a flash, $1000+ worth of jackets are gone.

Here are pictures of the three missing jackets:

For the below jacket, mine was actually brown and not grey.

So I ended up having to purchase all of the jackets back. The leather jacket was (luckily) on sale, and my sister gave me a mall gift card that she had received as a gift, so that helped. The 3rd (brown) jacket, I purchased used off of kijiji. I bought it in black instead of brown...holding out that maybe.. JUST maybe, my brown jacket might still turn up. As for the wool hooded jacket, I couldn't find that specific one, so I bought a military typed jacket:

So, while it ended up costing me about $600 in the end, I was able to replace all of my jackets. My father gave me money to purchase the coat that I bought off of kijiji.

The mystery of the missing jackets remains open..

I don't have time for this!

2010-10-04T18:21:00.000-04:00

I'm getting worried about my blood work.

I last did blood work in early October. My forever dropping hemoglobin at that time was 66 (or 6.6). I don't have an appointment to get a scope of my stomach done until November 9. In the meantime, in an attempt to avoid getting transfused again, my nephrologist has suggested 5 doses of Venofer via my dialysis machine for my next 5 dialysis runs. Then, we shall check the hemoglobin again.

To make things worse, I'm not currently having a lupus flare, but my lupus indicator numbers are certainly creeping up. They have been slowly climbing over the past few months. Did the stress of this exam push me into a flare? Who knows. I haven't had a real flare in a few years. It's hard for me to say "oh yeah, I'm having a flare because I have joint pain". I don't get joint pain anywhere except my knee and my hip...and that's because I have avascular necrosis, so that pain is there whether I'm flaring or not. Not to mention...if I am flaring..what happens? I go back on high doses of prednisone: the very drug that caused my avascular necrosis in the first place. Crappy.

I don't see my rheumatologist until the last week of October. I'm going to do full bloodwork about a week before I see him so that he has the most up to date blood work to look at.

Man, I gotta say...I'm worried. I have 6 courses this semester and I want to finish them all. I don't want to have to drop anything. God, help me through this and continue to give me the strength that you've been giving me all along...

Bah, it was hard!

2010-10-02T18:16:00.001-04:00

So I can finally close the "study for the NKE" chapter in my life. I studied, I paid copious amounts of money for study guides, I did group studies with others...and after about 2.5 hours, it's all done and over with.

Maybe the title of my post is deceiving. I don't feel that the NKE was difficult per se, but I do feel that the study guides that I used did not seem to prepare me enough for the exam. I know that the people who create these guides do not have direct access to what is on the test, so they can only do the best that they can. In fact, I actually do feel a lot more knowledgeable and comfortable with HR concepts after using some of these guides. I just feel that some of the questions asked on the exam did not seem to translate. Well, I will have to wait until December before I get my mark. If I did not pass, I will need to go to get a degree before I can officially obtain my CHRP, as the deadline for being able to get that designation without a degree is December 31 2010, and the October 2 sitting of the exam was the last sitting of the year.

Well, we will have to see how it goes. But, I am not a quitter. If I have to write again, I will. But one thing is for certain-that CHRP designation WILL be mine.

:)

Where's my call back, dermatology?

2010-09-27T20:23:00.003-04:00

You know that feeling when you just feel....weird? That's how I feel. I've been having some strange pain in my right shoulder, my mouth/throat seems dry all the time, my appetite isn't as huge as it usually is...just weird stuff.

I'm just hoping and praying that everything will be ok.

It's been two weeks since my dermatology appointment and the doctor promised me she'd call me back after a week after researching the "strange" white blemishes/spots on my face. Where's my phone call?

This Saturday is my NKE designation exam! Eeep!!

I'm going to get a hair cut on Tuesday. It'll be a bit of a pampering for me...just for all the studying i've been doing. I'm considering getting a massage that day too! Too bad my work benefits don't cover hair cuts. Heh.

Ok, going to study for a bit longer, then I'm going to set up my dialysis machine and get ready for bed.

Oh yeah one more thing- i have the comments on my page set up in such a way that I have to approve them before they appear. It's funny how some spammers try and "sneak" comments on my post in an attempt to advertise on my page. In a previous post when I first mentioned the white spots on my face, some blogger webpage dedicated to "skin whitening" (everything on the page was in asian characters except for the words "skin whitening") commented on that post and said something like "i like your blog, keep blogging". Oh, they like my blog! How nice....hmm, interesting that a SKIN WHITEning blog comments on my post about WHITE SKIN spots.

Nice try.

Updates!

2010-09-18T21:42:00.005-04:00

So I know I have been absent from my blog. I started school this month and am taking 6 courses..! Much more than I've ever taken at once. One course doesn't have any tests except for 1 final exam at the end of the semester, and two other classes don't have any exams at, just assignments. I can handle those.

I went to see the gastroenterologist earlier this month. Although it has been shown that there is some bleeding in my stomach, she is convinced (like everyone else) that it's Lupus. Yeah, what ABOUT lupus? It's so convenient (for doctors) when someone comes/walks into their clinic and has lupus.

Me: My arm's itchy.
Them: Oh, it's probably the Lupus.

Me: Man, I forgot my watch at home!
Them: it's the lupus I bet.

Me: Can I get a big mac combo with a coke, lots of ice?
Them: Would you like Lupus with that?

Bah! I want answers, not just "well maybe it's Lupus"! Anyhow, the gastroenterologist has told me that her secretary will give me a call to schedule a scope. From past experience, it has been determined that I have a twisty/bendy colon, which therefore results in mucho pain-o for me. So, she said she's only going to do a partial scope, and give me lots of drugs. Hurrah Drugs!

I don't know if I mentioned this on my blog before, but I went to the dermatologist because of a skin problem I'm having. On my face, I have tiny little white dots. They are not raised or bumpy. They are smooth against my face. So, I went to see the dermatologist. She didn't seem to believe it was caused by my medication. She also checked my skin under a black light and determined that it was not vitaligo(sp?), so I'm pretty happy about that. What she DIDN'T know is...well...what it was. She called her one of her colleagues as well as a student doctor who was with her colleague to stare at my face. No dice. So, the dermatologist promised to research my "white spots" and call me back in about a week. I look forward to the phone call.

This wednesday, I'm going to repeat my cross match with my bro. Fun times! Stupid blood tranfusions screwing up my cross matchedness!

Other than that, I have spent most of my time over the past couple of weeks panicking about the NKE I'm writing in just a few weeks. I hope I pass. I've been studying a lot and would be crushed if I did not pass.

Anyhow, I will try to throw in an update here and there, but as you might imagine, I might be a bit too busy to report anything meaningful!