Friday, October 31, 2008

Ugh...unbelievable!

So I just got back from the fracture clinic. I got there at around 8:00am, checked in, then sat down to relax, sip on my soy vanilla latte, and eat my cinnamon glazed donut. I opened up the package for my donut and it was covered in chocolate. Eww, that's not what I asked for. So I went back.

I received my donut from the unapologetic employee and headed back to the clinic appointment just a few steps away. I sat down to enjoy my donut. I took two bites, took my medication, then another sip of my latte.

"Florence?" I heard. I turned around and saw Luciano, the same helper guy who was there the last time. He helped me by-pass the x-ray line last time.

Shocked, I pointed at myself like "Me?"

"Yep. We called you a few minutes ago but I think you were out to get your coffee".

Rad! I've only been here for like 5 minutes!

Oh wait, I had better not start doing triple axles yet. I still have to wait to see Dr. Lau. Another 5 minutes passed and there he was. Shocking X 2! He asked me how my foot was and I told him that it hurt again. I also told him that I had done an x-ray yesterday just so he could have it. He looked at the x-ray and it didn't show much. He suggested that I get another MRI done. He sat across from me and told me to give him my foot, which I did. He began to press gently certain parts of my foot. The part that was broken before didn't hurt, but right where my middle toe is, at the top of my foot, when he pressed there I let out a soft yelp. It hurt. It felt exactly the same way it felt last time when my foot was broken and the doctor touched it.

He suggested that I wear a short fracture boot until an MRI could be scheduled. Ah crap, not another fracture boot. Well, at least this would be a short one since my ankle is not involved. Dr. Lau wrote out a prescription for a fracture boot. I sat there and wondered why he did that as no one wrote any prescriptions last time. Dr. Lau asked me if I had insurance and I told him yes...was I going to have to pay for this?

Shortly thereafter, Luciano came in with a black, short boot. He put it on for me. It was different than the one I had last time in terms of how it needs to be put on. I'm glad that it's short because the other longer one was so restricting that it put a lot of stress on my ankle.

After putting it on, I followed Luciano to the front where he put the information in the computer for my MRI. I asked him what I needed the prescription for and he told me that it was for the boot. I asked him if I was going to have to pay for this, and he said that he sually wouldn't charge me but it did cost $150. Sheesh! Glad he was nice enough to do that.

After that, I headed home. At least I don't have to worry about being late for my dental appointment at York Finch Hospital. And, luckily, the MRI department called me promptly and told me that there was a cancellation and an MRI appointment came up at 11:30pm tonight. I accepted and I'm gonna get my foot MRI'd.

I'll discuss what happens with my wisdom tooth extraction consultation appointment tomorrow! :)

Wednesday, October 29, 2008

And my right foot hurts again...WHY???!?

I'm angry. My right foot hurts again. Not my ankle, just my foot. It's pretty much in the exact same place as the previous break. I'm afraid that it's broken again! How could this happen?? I have an appointment at the fracture clinic this friday. I was going to cancel it ages ago but thankfully I didn't. I dread sitting in the waiting room for hours on end for this stupid appointment...ARGH!! Especially, I have an appointment at another hospital on Friday as well, and that hospital is pretty much on the other side of town. I have no time or patience to wait forever and ever.


I called the fracture clinic and the nice secretary suggested that I come in at 8:30 instead of 9:30. I hope this will help. I also plan on going in EARLIER to get an x-ray done beforehand, then I won't have to worry about sitting in the fracture clinic forever waiting for the x-ray.

>:-(

Friday, October 24, 2008

I found this email that I sent to my friends

I sent the below email to my friends a couple of years ago after my perforated bowel fiasco. I went through a lot and it was scary. The below email was me updating my friends on what happened when I was in the hospital. I thought it was an interesting (and informative) email outlining what I had gone through in the hospital


From: ".:*Miz_Flow*:."
Subject: Hello xxxxx & xxxxx!
Date: Tue, 10 Oct 2006 20:31:48 +0000

Hey Ladies,

xxxxx, I got your message yesterday. Sorry I didn't pick up. My nurse was here when you called, and I did hear my phone ring, but I forgot to check the message after my nurse left.


I am doing pretty well. Not the Sunday that just passed, but the Sunday previous to that was the day that a nurse at the hospital took my staples out. Well, wouldn't you know that a few seconds after all the staples were out, the wound just kinda.....popped open? Yes I know that sounds gross, but it did. It didn't bleed or anything, and the pain was minimal when that happened. But I do have a gaping hole in my lower stomach now. The doctor says he doesn't want to re-staple it or stitch it up, or else only the surface will heal and the inside won't....so i'll end up with a big hole in my stomach which is covered by healed skin. That could cause an infection.

So, a nurse comes by everyday to clean my wound, and pack it with gauze and bandage it up. Apparently it is supposed to heal from the inside first, and then slowly heal up and close. It looks like I had a c-section and the doctor forgot to close me up. Kinda weird!

But I am doing well. Tylenol 3's and I have become great friends in recent days. Walking fast, sitting up for long periods of time, and my energy level are my main obstacles at this point, but everyday there is definitely progress.



Thanks for coming to visit me that day. It was good to laugh....even though it kinda hurt the staples!! Haha, but a good laugh was worth it.



I must say, however, that the day after you two came to see me was a rough day for me. I was given a blood transfusion while I was on dialysis and I had a bad reaction to it. The first though was that I must have been allergic to a protein in the blood I was receiving. Basically what happened was my stomach started to hurt really bad. I could barely lie still. I started sweating profusely...like literally as if I just ran a marathon in Africa. Sweat was pouring off of my face. My pulse went up to 180, and I was screaming bloody murder. Luckily I didn't have a roomate at that point, as my roomate went home earlier in the day. Doctors and nurses rushed in. Nurses first hooked up some morphine to my IV, and then Benadryl. After receiving morphine for about 10 minutes, the pain subsided.


My dialysis was stopped. The nurse doing my dialysis changed and cleaned the machine so that I could continue with my dialysis without the blood transfusion. Dialysis was restarted. After about 45 minutes, I could feel that same pain in my stomach coming on again. I complained again...and before I knew it, my heart rate was up again. I was sweating like crazy again, and my stomach was killing me.


Doctors and nurses rushed in again. One doctor was holding my wrist, checking my pulse. What was scary is that I could feel my eyes rolling into the back of my head. Then, I went blank for a moment. Then I remember someone putting an oxygen mask on my face, and I remember the doctor that was holding my wrist slapping me lightly in the face. I also remember him yelling at someone to call the ICU, and to call a code blue. Then a female doctor came along and was asking me questions, such as what my name was, where was I, why was I here, etc. I answered all of the questions, and was a bit confused as to why they were asking me stupid questions, especially when I was in pain. Where's my morphine??


After listening to the doctors and nurses talk back and forth, I figured out that the doctor who was holding my wrist and checking my pulse suddenly lost my pulse for several seconds. I guess he thought my heart stopped (or maybe it did..?) So that's when they were going to call a code blue but I guess before it got to that stage I was alert again. So that's why they put the oxygen mask on me and stuff.


So I guess it was obvious that we were going to skip dialysis for that day. I was exhausted, and my stomach felt like I had just finished doing 100 sit ups. I stayed in bed for the rest of the evening while my mom and dad watched on. The doctor who was checking my pulse came in to check on me all night...at least every one and a half hours. I don't think I've ever seen such a dedicated hospital doctor.


Alas, after much investigation, it was found that the reaction I had wasn't to the blood transfusion at all. It turns out that after the surgery, there had been some bleeding going on in my stomach. That is what caused the intense pain, which caused all of the other symptoms. I was given some medication via IV to help with the bleeding, and I was also given some oral medication. They all helped. Doctors had suspected previously that I was bleeding somewhere because my blood count was very low, and also (this is gross) because of the colour of the stuff coming out into my colostomy bag. While when normal ppl go to the washroom, its brown. Mine was much darker, and that is an indication of bleeding. This was also confirmed by a G.I. doctor who performed a scope on me (scope=sticking a camera down your throat to look at your throat and stomach). I gagged the whole time, even though they gave me plenty of relaxation drugs. During this scope, they also discovered a cut on my esphophagus, which explained why I was having trouble swallowing, eating, etc. Apparently the tube that was in my nose and down my throat for a few days after the surgery cut my throat. It is unclear as to whether or not the cut occured while it was being put in, or taken out.


I am no longer bleeding, and feel much better. Eating is still slightly painful, but much better than it was a week ago. That whole episode prolonged my hospital stay by at least 5-6 days. Boo! Oh well, I'd rather stay a couple of extra days just to make sure everything is good.Geez, this is a long email. But that's the update!


zzzz, I will definitely let you know when my throat is 100% so we can have cake! Yummmm....

Thursday, October 23, 2008

4 Years down...6 to go :-(

I just came back from seeing the transplant doctor today. Dr. Schiff. He's a really nice person. I went to see him today, just so he could basically look over my bloodwork and stuff.

Things that I had put out of my mind were brought back to the forefront. I've had two bone marrow biopsies, one last year and another the year before (I believe). The main reason for having this bone marrow biopsy in the first place was to investigate my ever dropping/never rising hemoglobin (which, has since resolved itself since being on home dialysis). However an unexpected surprise was found. There was something in my blood that might indicate blood cancer, aka leukemia. Upon further investigation, it was found that I don't actually have leukemia, but whatever cells or whatever it was that they saw in my blood might or might not indicate leukemia in the future. It worries me.

Dr. Schiff still wants to keep me on the transplant list. He told me once again that I'd be put on the transplant list as of when I first started dialysis, which was in 2004, either September or October, I cannot remember. So, usually, that would mean at least another 4 years of waiting for me. But of course, there has to be a complication where I am concerned. Because of several different factors including my blood type, the time it'll take for me to get a kidney increases from a minimum of 4 years to a minimum of 6 years. Basically, it takes about 10 years, and since it has already been 4 years, there are 6 more to go.

Dr. Schiff has mentioned that because of this gene or whatever it is in my blood, when it does come time for transplant (which, he said, he wants to get me one immediately) they'd want to give me different or more moderately dosed medications. I'd also need to be watched and monitored regularly to make sure I don't suddenly develop leukemia. I really hope that doesn't become an issue. Geez, I have ENOUGH to deal with. I certainly don't need cancer to ice my cake. I'll take my already decadent cake without icing, please!

For other people who get transplants, usually after taking the immunosuppressants for a certain amount of time, they are able to completely come off of these drugs. I'm not sure that'll be the case for me. I've been taking immunosuppressants consistantly for 12 years because of my lupus. Just because I get a new kidney, I don't think that's going to "cure" my lupus, therefore making it ok to just stop my immunosuppressants. The doctor I spoke to before Dr. Schiff had mentioned that and said that there would need to be discussions between Dr. Schiff and my rheumy Dr. Fortin in regards to that. I don't see him allowing them to completely stop my immunosuppressants, but we'll see.

I'm not the expert. However, at times, instead of following my own instincts I allowed others to make decisions for me. The biggest mistake in that regard that I've ever made was allowing some doctor I've never met before to stop many of my medications all at once when I was leaving the hospital (ramipril, fureosemide, etc). He stated that these medications were "bad for my kidneys". That was at the end of August in 2004. Needless to say, as I mentioned earlier, I ended up on dialysis in September or October-ish. I'm positive that it was in direct relation to all those medications being stopped at once. While I had been informed that I would eventually need dialysis, I strongly believe that if I hadn't had that doctor that day, my complete renal failure would not have occured for at least another couple of years. Sad, but true.


I'm doing much better on home dialysis, but the idea of having to do it for at least another 6 years is a bit scary. I like having this control over my life, but I'm also a bit helpless when it comes to other things as I have mentioned in previous posts, like just taking off and going on vacation and things. People take off to on vacation all the time. They do it because it's just something that they want to do...they just want to get away. When will it be my turn to get away?

Wednesday, October 22, 2008

Charged with First Degree Murder

I was watching the news last night with my mother and was quite distressed at what I saw. A man living in Hamilton (Ontario, Canada) has been charged with first degree murder.

You see, this man is HIV positive, and he knowingly had unprotected sex with 13 different women. Of these 13 women, 7 of them have now tested positive for HIV. 2 of those 7 women have died.

I've seen some arguements on the internet and opinions are mixed. Some people say that it was the responsibility of these women to find out who they are sleeping with. Others say that such logic would imply that it is up to a woman to know that the person she's dating is a rapist, or if someone who happens to be in a bank and gets shot by the robber is actually at fault for being shot.

While I do believe that you should be careful whenever you engage in any sort of sexual activity with another person, it's also difficult in that this person may be someone you've known for a while and has flat out denied/lied to your face about having such a disease.

I know that Lupus is nothing like the HIV virus in that I cannot spread this disease to anyone else through sexual contact. That being said, I know all of the problems and pain I've gone through because of Lupus. I wouldn't wish Lupus upon anyone! If Lupus were somehow contagious, I would do everything and anything possible to prevent myself from spreading it to anyone else. Anyone who thinks otherwise is completely selfish. Bottom line.

I was watching a documentary once about the horrible epidemic of AIDS in Africa. This is a story close to my heart since both of my parents are Nigerian. While I was watching this documentary, I learned about one of the many reasons this disease is so rampant in Africa.

In some cases, there is some sort of belief that if a man has AIDS, if he finds a young virgin and rapes her (or otherwise has sexual intercourse with her) that he will be cured of AIDS as it'll be passed on to this young female virgin. What makes it worse, you ask? Well, the mentality is also "if at first you don't succeed, try, try again". It's so unfortunate that people are actually being raped because of the false belief that having intercourse with a virgin will cure you of the HIV virus and or AIDS. The particular case I mention above, the man involved was born in Uganda. I don't know if his act has anything to do with this belief, but either way it is simply horrible that many people's lives have been forever changed and possibly shortened because of this disease.

While I was watching this story on the news, both of the this Ugandan born man's lawyers were stating that these two women had cancer and they died of cancer. Hmm, what a coincidence that both of these woman should both die of cancer and both had relations with the accussed?

I just thought I'd write about this as it disturbed me so.

Tuesday, October 21, 2008

When Medroxy Doesn't Work

I have to go back to Mount Sinai to see Dr. Thomas.

I've used medroxy before. When I used it, it was very effective in regulating my periods. And, as all you Lupus patients out there may know, having a regular period is a feat all by itself.

This time around, my body doesn't like medroxy. Either it doesn't like it, or it doesn't care about it. It's been a month and it's not regulating anything. The last time I used it, regulated everything in 10 days, which is right on schedule.

I'm worried. I'm worried that this might have something to do with my perforated bowel. Was damage caused to other things that I don't know about? Or what about when my wound popped open? Did that cause some unknown damage?

I contacted Dr. Thomas' office to express my concerns. She's a very busy woman so it took a couple of calls to hear back from her office. Her secretary informed me that Dr. Thomas would like to see me in early November. So, I'm going to go back to her office and see what she has to say.

I have cysts. I have cysts on my ovaries. I've been told that before. I've been told that and it's scary. In fact, I have many of them on my ovaries. I'm just worried. I'm still holding on to the hope that everything will be ok.

My thoughts are between Dr. Thomas putting me on some other sort of contraceptive, or her wanting to put me through another one of those awful transvaginal ultrasounds. Well, I'm sure that nobody who has ever had one likes those, but obviously whatever needs to be done to see what's going on needs to be done :(

I'll update after the appointment.

Monday, October 20, 2008

What happened to my Section 8??!!

If you click on the label entitled "section 8", you'll find that I wrote an entry at the end of May. A section 8 had been filled out for me by the pharmacist at the hospital and also by my nephrologist. When it was filled out, I picked up the form (or it was mailed to me...I can't remember because it was a long time ago...!) and faxed it to the appropriate department.

A few months later, I began to wonder what was going on. I hadn't heard back as to whether or not my Section 8 had been approved.

The section 8 is for my cellcept. My trillium drug plan does not cover my cellcept because it is generally only covered for those who have had a transplant. I have not had a transplant, but I do need to use cellcept to keep my lupus related kidney rejection at bay.

So, this section 8 basically allows my doctor to explain why I am taking this medication, then trillium decides whether or not they will assist me with the cost of my cellcept.

So, the secretary at my home dialysis unit was advised by the pharmacist to call ODB (Ontario Disability Benefit) to inquire about the form I had faxed in. Sometimes things get lost or mixed up, and a phone call is necessary to sort things out. When the secretary called...she could get no one to call her back!

So, my section 8 has yet to even be looked at, much less approved. Now I have to trouble the pharmacist to fill it out again and have my nephrologist fill out the other parts. Thankfully both the pharmacist and my nephrologist are wicked cool. Sometimes I feel like I ask so much of them...I feel like a big pain! But I really need this section 8 thing looked at.

Saturday, October 18, 2008

National Chocolate Cupcake Day??

Yup, it's true. Today is national chocolate cupcake day. To honour such a joyous occasion, I baked chocolate cupcakes on Thursday evening and brought them to work on Friday. I also made some and gave them to dad to take to work as well. I hope they enjoyed them.

Well, that's all I really have to say now. You see, I'm a huge UFC fan and there is a UFC fight night tonight in about 50 minutes. I'd like to make myself something to eat AND set up my dialysis machine before it starts. That way, I can sit back, relax, then at my leisure, cannulate and connect at like 10:30-11pm.

Friday, October 17, 2008

Flare for Fashion!

Yesterday was the 4th annual Flare for Fashion show, a fundraiser for Lupus. I had a blast participating in it.

The event took place at the Liberty Grand. I thought I was off to a bad start much before the show even began. First of all, I have a cold and a runny nose. I was sure that I was going to have to walk the runway with a tissue in my hand...very chic, huh? LOL. But thankfully, my runny nose departed before the show...and came back that night when I got home?? Haha oh well, the important part is that it wasn't there for the show.

Aside from the show itself, I met a lot of wonderful people that I hope to keep in touch with. All of the Lupus models are inspirational and strong women...I'm lucky to have met them all.

Getting pictures were tricky simply due to the fact that taking pictures with a digi cam requires much tweaking when it comes to flash, no flash, etc. Sometimes the pictures appear too dark, sometimes you can't see anything, sometimes it's blurry, etc. I posted some pictures below. They are a combo of my pics, my sister's pics, and pics taken by others.

There were lots of celebrities and media there. Some of these ppl include Kim D'Eon of ET, Canada, many personalities from global, Rachael Blanchard, Katie Boland, Ngozi Paul...lots of people.

It makes me feel great to be involved in an event that raises money for Lupus. What makes this specific event all the more special is the fact that the clinics that I go have lost their funding. This event is the only private fundraiser for the event...and it makes me sad. How can the government grants being received by the lupus research and Toronto Western Hospital clinics be lost? It saddens me because it makes me feel like Lupus isn't important enough to have continued funding. How loud do we have to yell? How much do we have to suffer before someone says "yup...lupus is important and we need to find a cure?" Lupus affects so many people...many more than people think. I'm also sure that illnesses and diseases that are more well known still have continued funding, even though these so-called well known diseases and illnesses don't have as many people suffering from them as Lupus does. It's a shame.

Here are some pictures for the Flare for Fashion show. I'm waiting on some video footage of the show as well. At that point, i'll post that as well!











Tuesday, October 14, 2008

DIE-alysis!

Ok, now maybe the title is overly dramatic. It was either DIE-alysis or Dialy-PISSED. But either way, I was annoyed.

It all began on Saturday night. I went through my normal procedure for setting my machine up:

**Open the valve for my water and turn it on, therefore allowing my machine to rinse.
**Grab my saline bags, syringes, needles, iv 3000, etc.
**turn my machine on, then put the lines on
**Draw 3 syringes of saline, 1 syringe of heparin. Attach the heparin to the machine and infuse until the saline just reaches the tubing.
**Prepare my gauze that I'll use to stop the bleeding after I'm done dialysis in the morning, then place them back into the paper wrapper I took them out of
**open the 2 bandages that I plan to put on both of my buttonhole sites after I have finished clotting. Place those in with the gauze
**Use 2 of the 3 syringes to prime my needles.
**cut my iv 3000 down to size so that it's just the right size for my arm.

At this point my machine is ready to do the dialysate preparation. I connect the acid and the bicarb and away it goes. I take this time to brush my teeth, wash my face, etc.

This is the step I was at when it all went down. I had finished brushing my teeth and there was still water in the sink. We had been having problems with the sink so this wasn't new. My mom saw it too and decided to take a plunger to the sink. It all went downhill from there.

It was at this point that water started backing up out into the sink. If left for about 10 minutes...the sink would overflow. My mom proceeded to use a bucket to remove the water from the sink.

Dad came home and looked at it. He was equally baffled. I felt nervous. At this point, even though I said that I would turn the machine off, my dad insisted that I connect to my machine as I normally would. I wondered why and how that would work, unless someone planned on sitting at the sink all night long and removing the water from the sink and dumping it into the toilet or bathtub (neither of which were backed up). Even if Mom and/or Dad did want to do that I wouldn't feel right about that for two reasons. The idea that the sink was backing up in the first place bothered me a lot...a lot to the point where I was getting heart palpatations and felt the need to take my blood pressure. My heart rate and bp where slightly elevated. Secondly...No! No way am I going to sleep peacefully knowing that my parents are dying of tiredness. Just not worth it.

Finally I convinced my Dad to agree with me that it was a good idea to let me disconnect myself so I did. I disconnected, turned my machine off (without disinfecting), pulled my needles out, clotted my arm off, bandaged my arm off, then went to sleep.

The next day I was woken up by the sound of my Dad working away at the drain. God bless my Dad, who spent the remainder of that day trying to fix the problem. He tried different things and he plugged away and plugged away to no avail. He even by-passed going to church just to work on that drain. My Dad is the best Dad anyone could ever hope for.

Finally, end of the day, my Dad couldn't solve the problem completely. We decided that it'd just be a good idea to simply call the same plumbers who did the dialysis set up for me in the first place. We had called another plumber that the guy at Rona referred us to. He refused our request for help as soon as he heard the words "medical equipment". I wasn't asking him to repair my machine, just fix the fricken blocked drain! But alas, I commend someone for admitting that they aren't sure about something and would therefore rather stay away.

The next day was Monday, which is a holiday here in Canada (thanksgiving). I woke up at the crack of dawn to go to dialysis at the hospital. Ahh...how did I wake up at this crazy hour 3 times a week for like 4 years? Eww.

Dialysis went well. I didn't get deathly ill, but at the same time Rose drugged me up at the very beginning of dialysis with gravol. I sat for the 4 hours and was content with playing games on my sister's Nintendo DS and watching the food channel on two different tvs.

After dialysis, I wasn't as exhausted as I usually am after a 4 hour run. That's only because my body is still confused. I knew that if I did it again in 2 days my body would be wise to my 4 hour dialyzing ways and would punish me big time. Definitely not what I want the day of the Flare for Fashion show.

Anyhow, it being a holiday weekend, I couldn't get a hold of the same plumbers who did my dialysis hook up the first time. I'd have to wait until tomorrow.

After a miscommunication with the dialysis tech at the hospital, today I came home and paged my dad and asked him what was going on with the plumber. He told me that the tech had told him that he was going to call the plumber for me. Sounded right, as that is the same thing the tech told me. So I decided to call the tech.

I called the tech and he seemed quite shocked when I asked him if he called the plumber. He told me that he gave me the plumber's number, which is true, but he also told both me and my dad that he was going to call on my behalf. Perhaps both my dad and I have hearing problems.

Anyhow, I called the plumber. The line was busy. Damnit! I waited 5 minutes and called back. I got a delightful lady who told me what the price was per hour. $90. Then $30 every additional half an hour. Nuts. Well... I needed my machine. I asked her when they could come and she said she wasn't sure if they could come today. I told her that this was for my dialysis machine and I need dialysis, so if they COULD come today I'd be greatful. She understood and sympathized. She told me that she'd send someone later today and that she'd call me when they were on their way.

About 20 minutes later, my doorbell rang. Shortly after, I heard a knock at the door. "Already??" I thought.

I looked through the peephole and I saw the two plumbers. They both walked in. Martin and Tosha were their names. Yep, Tosha is a girl's name. Perhaps it's sexist or perhaps it's not politically correct for me to even mention that Tosha was a girl plumber. All I know is that she's wicked cool.

I led the way to the room. "Work away" I said. I was going back downstairs to finish eating my pizza slice.

Some time passed when I heard Martin's voice "Excuse me," he said, "can you come and turn your machine on?"

I came upstairs and turned the R.O. on. No backing up. I asked him to turn the water in the sink on. No backing up. Ohh...I'm a happy girl right about now.

I thanked Martin and Tosha for their services. Martin asked me if he was to bill the hospital, or if I was going to pay, etc. I told him that I'd be paying. He went back to the truck and got the invoice. He called the office and they told him what to charge. $90. $90 plus tax actually, so it was $94.50. I gave him $105. He gave me back $10.50. He has $94.50, I have a working drain so I can dialyze at home. Everyone's happy.

Now I have to run my water for at least an hour, then I have to disinfect my machine. Then I have to figure out how I'm going to cannulate with two sharps as I have to develop two new button hole sites...

...but that, my friend, is a whole new blog entry altogether!

Friday, October 10, 2008

Yummy and Fab-U-lous!

I spent the afternoon with Daddy. There's this great Chinese food place near Sick Kid's hospital that my dad went to with one of his bosses on Tuesday and he really liked it. He told me that he'd take me there on Friday (today), so we went!

We got there at around 12:10pm. There was a lineup of about 10 people waiting to be seated. I could definitely see that the was a good spot to be just by looking at the waiting people who could have easily left and went elsewhere. Dad and I were annoyed by line jumpers, though. 2 ladies in particular came in. They were well dressed in what appeared to be business attire. They spoke to each other in chinese as they non-chalontly walked passed the line and to the front. Since it was crowded and loud, Dad and I couldn't hear what was being said...but we didn't need to. A lady at the front of the line, a very animated one might I add, pointed at the back of the line while her lips moved angrilly. They 2 ladies sheepishly returned and joined the back of the line. What were they tryna pull anyways??

The line up was deceiving. Dad and I were seated shortly afterwards, mostly because there was only 2 of us. The only stipulation was that we had to share our table with others. There were 2 ladies on one side of the table, another two ladies on another side, then myself and dad also, making 6 of us at the round table.

I looked over the numbered menu and thought about what I would get. I saw another meal get placed onto the table and the plate was quite large! Was this going to be my meal size? ? I ate such a big breakfast...I didn't expect that Dad would want to be up and out of the house at 11:45am. I then had to also take into consideration the fact that Dad would probably be hungry as he usually Fasts on Fridays until 12pm.

I looked over the menu and narrowed it down to one of two rice dishes: black bean or schezuan. I also had to decide between chicken of beef. I first of all decided that I wanted beef, as often times chinese food places that have chicken dishes have chicken pieces that still have the skin on it. Yeck! So after much consideration, I went for the black bean beef.

My dad got his meal in like 5 minutes! He ordered a meal that had duck and something else...I think chicken. My meal came shortly afterwards...black bean chicken???

"Um...I ordered the beef."

"Oh, sorry."

My meal with the beef came 2 minutes later. Wowzers! I began eating and realized very quickly that this was REALLY good, and I was quite disappointed that I wasn't starving and wouldn't be able to eat the entire meal. But it's all good because I plan to eat the leftovers right after I type this entry!

After our fantastic meal, it was time for me to go and pick out an outfit for the 'Flare for Fashion' fashion show part of the evening. Dad and I drove around for a while before we found the place, so luckily we left the restaurant at 1:00pm and my appointment was for 1:30pm.

I got to Images That Suit, the place that I'd be getting my outfit, at around 1:15pm. I met a lovely lady named Vera who welcomed me very warmly. We went into a room and chatted. She asked me about my life, my diagnoses, the symptoms that I presented with before going to the hospital, etc. She was very kind, a great listener, and I felt extremely comfortable right away.

She asked me which colours I liked, and looked at what I was wearing. I was wearing a black tanktop/boy beater with a grey short sleeved blazer. She came out with some outfits and I was pretty excited about that.

Believe it or not, the very first outfit I tried on was "the one". It was a simple, almost blazer style jacket. It wasn't just any blazer, though. It was pretty funky. I stood there, looking in the mirror as Vera tied up the waist of the jacket. She gave me a pair of pants to wear too which were just fantastic. They were brown with a crease down the middle and they fit me perfectly. I naively asked her how much the pants were, and she told me that they were made my a german designer, who was the same person who made my jacket. When I noticed a $500+ price tag on the jacket, I didn't dare look at the tag on the pants! But hey, a girl can dream. Maybe one day...LoL.

I tried on a couple of other things, like another blazer style top, a leather jacket, a pull over sweater, and a button down sweater. It was fun. I felt like those celebrities with their personal stylists, because after speaking to me, Vera picked out some outfits that were in another room and brought them into the room that I was in. She basically spoke to me, got a feel for who I was, and chose an outfit based on that. She was spot on in that I actually may not have chose those things for myself had I seen them in a store, but when I put them on, I was delighted.

Just to accent the outfit, she tried out two different necklaces: one was a large wooden style beaded necklace, and the other one was a necklace with a flat,large gold pendant. The wooden-style necklace definitely added the exclamation mark to what was a great outfit.

If I'm going to be a model, I'm going to have to get used to taking my top off in front of people! When Vera wanted me to put on one of the sweaters, I took the sweater and stared at her, waiting for her to leave the room! Hahaha...she told me that backstage at the show I'd need to get used to getting dressed in front of others. It's ok though...it's not like I was naked or anything.

I had a great time and I'm looking forward to seeing the finished video too. It's coming up quickly. I also can't wait to wear the dress that I bought to wear during the rest of the show. It's fantastic too...and quite the lucky find! :)

Do you ever just feel...alone?

I do...but why?

It's simple. It's because I have an illness.

Well, perhaps it's not "simple", but perhaps it's a reason.

Even with my father, mother and sister right in the same house...I still feel alone. Never lonely, that's for sure. Just...alone. Even with tons of people around me, and even if I talked about how I felt until my mouth fell off...there would still be that feeling of "alone".

It's never going to be sufficient because whoever it is you're talking to won't completely understand everything that you're going through. Unless, of course, I was speaking to another Lupus patient on dialysis. Even then, it's not exactly the same. No Lupus patient is.

I take after my father. I'm a big giver. I give and I give and I give until I have nothing. Often times, while one shouldn't necessarily expect to get something in return when one gives...I often feel like I've gotten nothing in return. Giving is supposed to make you feel happy...but I'm often left feeling empty.

So what to do then? Stop giving? Change who I am? Probably not. But what I will do is give. Give to myself.

I'm going to get a pedicure in the winter time. I'm going to go for walks by myself. I'm going to go places (like the CN Tower or the museum) by myself. I have to realize that I can't rely on other people to make me happy. I can't blame others for making me sad.

I just have to "do me".

I also think that part of it is the fact that I haven't been to school for a while. Since May of 2006 to be exact. I think I need school. I need to do this for myself. I need that piece of paper that tells me that I've accomplished something great. That is to say, accomplished something great in spite of the fact that there are barriers and obstacles to overcome.

I have no idea if anything I just typed made since, but the point is this. I'm determined to make positive changes in my life...and I can't wait.

Thursday, October 9, 2008

Time To Rest.

I'm off today and tomorrow. I'm also expecting a delivery of dialysis supplies today. I hope the co-ordination of my dialysis supplies works when it's time for me to go to school full time.

I'm exhausted and I'm sick. I have a runny nose, and i've had at least a couple of nose bleeds too.

I work in customer service. In fact, I'm a front line customer service representative. That being said, in many cases, I'm the first point of contact when a customer calls in with questions that they have.

It's not at all realistic for anyone to try and satisfy absolutely everyone in a group. In a group of 100 people, there's always going to be at least 1 person in that group who is absolutely livid at a product or service they received. Well, perhaps not "absolutely livid", but maybe just unhappy or upset. When I got hired for my job, the first 6 weeks was strictly training. Training and nothing else. I am well equipped to handle all kinds of situations, whether they are directly related to their accounts or perhaps a complaint or a call expressing dissatisfaction.

Today, I didn't feel well equipped to handle such calls. I AM equipped, and I DID handle such calls with as much tact as humanly possible...but it was just different. I'm sick. My nose was running and I was constantly blowing it. I was coughing. My throat was sore so I kept clearing it. Today wasn't a good day and I don't feel like I was very productive. I just felt so blah. I was doing my job, and I was sure to press the mute button before I coughed or sneezed...but I also felt like I should have just stayed home. I was sure to keep to myself in that I didn't want to make anyone else ill, so I sat in the corner, essentially segregating myself from everyone hehehe. I washed my hands a lot too.

But still, you know how it is. All I wanted was my bed, my blankey, my hot water bottle, my bizline mug full of tea(hehe, got that mug from work), and most importantly, my mommy.

Thankfully, aside from having to roll out of bed for the delivery person who is supposed to arrive before 12pm (we'll see if that actually happens...hopfully it does) I'll have plenty of time to relax. I'm hoping not to be a sick and blithering mess for the up and coming flare for fashion show.

Wednesday, October 8, 2008

Why Not Organ Donation Awareness??

When I turn on the TV, I see plenty of commercials. I'm happy to see commercials about Lupus. Lupus is such an unknown disease, and anything that can be done to bring lupus awareness to the fore front is obviously a-ok by me.

Maybe I just have a bad memory, but I don't recall seeing any commercials about Organ Donation awareness. And if I have, and I can't remember, then that's a bad sign. Me, of all people, should remember seeing a commercial like that.

Yes, I have Lupus. I've had it since 1996 and, I must say, I'm definitely NOT Lupus' biggest fan. In fact, I'm not very fond of Lupus. Annoying, unpredictable, irritating, exhausting, and, I must say, a bit of a Debbie Downer.

But, let's not forget, Lupus affects many different things, and Lupus never seems to manifest exactly the same in anyone. You'd definitely be hard pressed to find 2 Lupus patients who are on the exact same medication regime. In fact, I'm almost positive that if I had another doctor in another part of of the province, country, or even the world, my medication regime would be different in all of these different situations.

My point, you ask? For me, Lupus affects my kidneys. My kidneys are broken. I need life saving dialysis just to continue on. Up until earlier this year, I was dialyzing in the hospital, 3 times a week, 4 hours each time. To be honest, back then, I didn't have a 7 day week. At best, I had 4 day weeks. My dialysis days were complete write offs. I'd go to dialysis in the morning at 7:30am. I'd sit there for 4 hours and be so ill with nausea and stomach cramps after an hour or so that I'd need to be drugged with gravol. After that, I'd slither myself into my Dad's car, to be driven home, eat because I was now starving after having the life sucked out of me during dialysis, then I'd head directly into bed. And I certainly wasn't the only one. There were at least 20 stations in my dialysis unit, and probably 20 stations in the other dialysis unit on the other side of the hospital. And that's my hospital alone.

The majority of us have one thing in common: we want a kidney. We want to be released from the shakles, the anchor that is dialysis. I'm not dialyzing in the hospital anymore. I'm at home, and my life and body have shown me in the way it acts and responds that home dialysis is so much better for me. I get to dialyze slowly over an 8 hour period which is much better for my body. I get to do it while I'm sleeping so that it doesn't consume my entire day. I have 7 days in my week now, and for that I'm thankful. But I have to say, as much as my life has improved with home dialysis, it still has it's downsides. Going on vacation? Don't get me started. Going on vacation, depending on where I'm going, costs a fortune. I have to pay for my dialysis and I only get $210 per dialysis returned to me by the government. This is certainly helpful, no doubt about that. But you must also consider the fact that when I go to England and pay 250 pounds a session, which is pretty much $500 canadian a session, I'm still out of pocket $890 for a 1 week trip.

But, I've been waiting for a kidney. I've been waiting since 2004. When is it going to be my turn? Do people even really understand what it is to sign their donor cards? Does signing one's donor card even cross people's minds?

Why aren't there commercials on TV discussing organ transplant and organ donation awareness? And, if I'm wrong and there ARE commercials on TV discussing organ transplant and donation awareness, then why have I not seen one in recent months?

Everyone has a different opinion on what I'm about to say, but many other countries around the world have an opt-out system when it comes to deceased donors. You are assumed to be willing to donate your organs if you should pass away. Here, we have an opt-in system. Who really thinks about such a thing? Some people feel that it should be their decision, but...let me be blunt here! When you're gone...you're gone! It makes no sense to me why someone would be dead set AGAINST wanting to improve the quality of someone else's life after they should pass away. It often goes even further than improving the quality of life...it SAVES lives! Why wouldn't you want your last gift to this world to be one where you are actually saving a life? Perhaps you're saved or improved SEVERAL lives!

I wish people knew more about organ transplants and organ donation awareness.

I wish more people signed their donor cards.


I wish I had a kidney.

Tuesday, October 7, 2008

George Brown it Is

Last night, I went ahead and accepted the offer of admission from George Brown. I spent hours just looking at both websites prior to making my final decision. I knew already that George Brown was the most logical decision for me in terms of location to what is important; work and the hospital. It also would be the safest and most convenient location in terms of coming home if I have to come home late in the evening. It's just safer.

So now that I've accepted that admission, all I have to do is find $1400 for tuition...

On Friday, I'll be getting outfitted for the Flare for Fashion show which is coming up on October 15th. Wow, where did the time go? I'm really looking forward to choosing what I'm going to wear, and I'm also looking forward to walking the catwalk! The show is going to be a blast.


I'm hoping that my cold will subside prior to the fashion show. Walking down the catwalk in a gorgeous outfit while hacking up a storm....it just isn't chic!

Monday, October 6, 2008

icky cold must go away

I've been suffering for the past few days now. Well, not "suffering" per se, but definitely uncomfortable. Every few minutes, another family member is shoving a tissue in my direction. I contemplate in my head and wonder why they'd do that, and no sooner do I start wondering did I notice my numerous sniffles.

Yup, I've got the sniffles. I'm also very phlegmy (is that how you spell it?) When I'm at work talking on the phone, I have to mute my phone while the customer is speaking so I can clear my throat. It sucks.

I checked the mail this morning and received my offical letters of acceptance from both George Brown and from Seneca. When I got the mail, I noticed that the Seneca letter was considerably heavier. When I opened the two letters, I noticed that the George Brown letter was simply a letter of acceptance with a book that spoke about how to pay for college in terms of being able to afford it, buying books, residence information, etc.

The Seneca envelope contained the letter of acceptance, a series of 3 sheets of paper which discussed the course I was accepted into and also what my school fees were, and the date that these fees were due. There was also a small white envelope within the package which was there in case you wanted to mail your tuition fees in. The handbook that Seneca included with the acceptance package is entitled "The Admission Handbook". It has a lot of the same information as the George Brown handbook but is much more detailed. It includes important dates in regards to deadlines for paying your tuition, when the first day of class is, etc. There is also a detailed list of the fees due for what looks like every single program at Seneca. This book is very detailed, it reading would most certainly warrant a nice cup of tea and a couple of shortbread cookies.

I think it's about time to accept the school of my choice, George Brown. I'm hoping that my waitlist status gets upgraded to accepted where the HR- co-op program is concerned, but we'll see. Then I won't have to worry about transferring into the co-op program after the fact.

I'm going to go and blow my nose now.

Wednesday, October 1, 2008

College Decisions Already?

So I've been accepted into 2 of the 3 programs I applied for, and 'waitlisted' for the other.


WAITLISTED?????


And doesn't it figure that I'm waitlisted for the program I wanted most, the HR program with the co-op option. But after perusing the site some more, it appears that I can go into the co-op option if I maintain a certain average of which I believe was 70%. That sounds reasonable enough to me.

At any rate, usually when it comes to a waitlist, I guess I might still be considered if some people who were actually accepted into the program choose to go elsewhere, or people who actually want to be in the program don't pay their fees before the deadline...then they loose their spot.

Is it bad for me to cross my fingers and hope that someone forgets to pay their school fees on time? LOL.

But I still did get into George Brown, and I'm pretty sure that I can keep up with a 70% average, so co-op still seems to be in my sites. Co-op is very important to me, and I hope my current employer is able to offer me a co-op placement when the time comes.

I have until October 15th to accept my George Brown offer, or October 20 to accept my Seneca offer. I think for George Brown I also need to take a math and/or english test to assess which level math/english class they'll put me in. I think more information on that will actually be in the acceptance letter I eventually get. (Yes, I creeped my application status online because I couldn't wait to get the letter!! Hahaha)

Hmm, I should probably go to MEC (Mountain Equipment Co-op) to get a new school back pack. I'm gonna need something comfortable (and stylish, of course)

Another thing I look forward to is assessing the disability services of the school of my choice. I plan on blogging about their services, what they offer, and how helpful they are (or aren't...hopefully I won't have to blog about that).

I know that in a few months from now I'll be smacking myself for saying this, but I can't wait to get back to school. I want to get this show on the road, get my degree, and get a big girl job, and a big girl place of my own, like a condo or maybe even a house. We'll just have to see what God has in store, but I can't wait!
 
Blog Design by April Showers Design Studio