Monday, June 30, 2008

Fun with my Sister Liz at Ribfest

Here in Toronto we have a Ribfest every year. I've heard of it, but I've never been. Yesterday, my sister asked me if I would like to go and I said I would.

Before that, I went to drop of the blood requested by the dialysis unit for transplant assessment, and I also went to see Dr. Fortin. Nothing significant happened at that appointment. Well, I shouldn't say that. Dr. Fortin said something about the Bone Scan showing that there was a bit of...I can't remember the word, but my bones did appear to be a bit thin. He did want to put me on calcium or rocaltrol, but those medications were stopped due to the fact that I'm on home dialysis. I think he said that he had emailed my nephrologist, Dr. Richardson, about the matter. I think he said that Dr. Richardson said that he didn't want me to be on those medications. I'm going to see Dr. Richardson on July 10th, so I'm going to have to bring it up in order to clarify.

So my sister and I went off to ribfest after my appointment. We had a blast. There were about 7 different places to get ribs and all of the places had various displays of all the awards they had won, so we just went to any lineup. The line up we chose was just great and the food was superb. Luckily, we stopped to get slurpees before going to ribfest, so we had nice cold slurpees to drink while eating. I also went off to get some corn on the cob after Liz and I ate our Ribs.

Something really odd happened while Liz and I were at Ribfest. A group of people came to sit at the empty spaces that was at our table. After about 10 minutes, my sister and I heard the lady sitting at our table cursing a blue streak! When we asked her what had happened, she explained to us that she got a gift from up above...right in her container of ribs! Yep, that's right. A seagull with impeccable aim pooped right into her food. How awful!

After that, this poor lady's husband came back from wherever he went and heard the bad news. He quickly scurried off to get more food. When he returned with the food, he suddenly froze and said "I think a bird just pooped on my head."

Sure enough, yep, a bird pooped on his head and some splashed onto the back of his black t-shirt. What horrible luck! When this lady's husband was off buying more food, she told us that when her husband proposed to her at Niagara Falls, a bird pooped on her hand and it went all down her forearm too. Since getting pooped on by a bird is supposed to be good luck, both herself and her now husband went to Niagara Casino and played a $20. Sure enough, they left with $40. Then, to celebrate the engagement, they went to a restaurant and ordered food and drinks. The service was terribly slow, but they still managed to rack up a bill of about $200. Because of the poor service, they got their entire bill for free! How about that?

My sister and I encouraged the couple (who also had a little boy in a carriage) to go and play the lottery! But at that point, we quickly went on our way for fear that we may suffer the same misfortunes at them.

Below are some pictures from Ribfest. Enjoy!

LOL I just love these two pics together. The first pic is of a sign that was there, and the second pic is, well, my sister's butt!:


First picture is a picture of the crowd lining up at various rib places, and the second is a sign I saw at the place we ended up choosing to buy our ribs:


Both of these pics are just me and my sister being silly. How much are you loving the slurpee product placement?


Me enjoying every last bit of corn. I paid $4 for that stupid corn....can you blame me for wanting to devour every last morsel??

Busy Week

This week will be a pretty busy week.

Today I have an appointment with my rheumatologist at one hospital, but before going to that hospital, I have to go to 'home' hospital to drop off some blood work. My nurse emailed me on Friday and asked that I bring in three tubes of blood, all for transplant related purposes. In the email she said that the transplant office needs 3 tubes for EBV, CMV, and Varicella. (No idea what any of them mean...!) But the bloods are drawn and they're chillin' out in my mini fridge until my ride comes to take me to the first destination, at which point I'll hop on the shuttle bus and shuttle my way on to hospital number 2. I hope that my rheumatologist will have some news for me where the results of the bone scan I did a few weeks ago are concerned.

Tuesday is Canada day so I'll be off work. I plan on spending the day downtown with my Mom, walking around and checking things out. That should be fun.

Wednesday is back to work. I have a 1.5 hour coaching session on my schedule for that day. Eep...that's gonna be rough! But if it's anything like my other 1.5 hour coaching session, it'll be a group coaching session so there will be 2 other people in there too. Thank goodness.

Thursday I'll be off to the native Indian reserve with my father in Parry Sound. It's about a 2 hour drive or so, maybe even more. I gotta make sure to remember to charge up that Ipod...or bring some homework. Nah...I'll charge my Ipod.

On Friday, I should be getting another shipment of dialysis supplies. I'm expecting some bicarbonate and some acid concentrate.

On Saturday, I'll be off to work in the morning. After that, I'm off to the park for my friend's baby shower. Sounds like fun. She and I went to the same high school, and I know her because her parents and my parents are friends. We're all part of the Nigerian Community I guess. But she's good people and I hope I'm not too wiped to attend her baby shower.

Well, that's a preview of my week. I hope to find some time (and energy) in between to post some entries and perhaps some pictures

Sunday, June 29, 2008

Oh how I'm loving Dr. Jonathon Craig all over again!

A few days ago, I wrote a post about remembering to be thankful. That post can be found by clicking right here.

After writing that letter, I decided to google my doctor from that point in time and see if I could find him and perhaps an email address. Luckily, I found his information almost immediately so I promptly emailed him. I was surprised at how quickly he responded..it only took Dr. Craig a few days.

In my email, I told him that he had a great impact on my life. I've had so many doctors in my life and he is one that I definitely remember. He had a genuine interest in me and always treated me like gold. I thought it was important to email him and let him know that.

When he responded, he told me that he did, in fact, remember me. He was glad to hear that I was doing so well. In my email to him, I included a picture of my father and myself together, just in case he forgot who we were and to jog his memory. He told me that he had already printed the picture and put it up in his office. He said "Your email was a reminder of why I do the things I do".

I loved the email. Loved it so much I cried.

Obagi Clenziderm-Normal to Oily Skin - Day 31

I haven't updated my Obagi Clenziderm pics for a while, so here I go.


(Left Pic = Day 15, Right Pic = Day 31)












I'm pretty pleased with the results so far. While I still have scarring from previous acne, I'm either going to have to just wait for my skin to hopefully heal and rid itself of those scars, or I'm going to have to invest in some sort of microdermabrasion procedure. I'm not sure that I'm at the point where I want to subject my skin to the sandpapering that is microdermabrasion, but that may certainly change. And, as usual, should I decide to do that, I will most certainly take pre and post microdermabrasion pics. Click here to see where I buy my obagi on ebay for a lot less than I've seen it elsewhere.


Since I no longer have a bunch of active acne on my face except for the rare one or two, when I put makeup on my face looks nice and smooth. I strongly believe that this is a combination of not only a skin care product that really seems to work for me, but also a wonderful makeup product as well. I'm so glad that I found Valana Minerals. At work, 2 different co-workers and my manager told me that my skin looked great and that I looked bright and refreshed! WOW! It's one thing to actually look at someone and think that, but if it's another thing entirely to actually vocalize it to that person. So that being said...who knows? Perhaps several other people at work look at me and think the same thing! :)

Saturday, June 28, 2008

So Important to remember to be thankful

I went out for an early dinner with my friend (bff) Sarah (I hate the expression, or perhaps 'abbreviation' "bff") On my way home on the bus, I heard a car honking its horn repeatedly. At first, I thought it was somebody honking their horn because of a soccer game that may have just occured. But I turned around in time to see a young gentleman, perhaps 16-18years old, being attacked by about 4 or 5 other boys. It was over just as soon at it started at the attackers scattered in different directions.

The boy who was attacked was still on the ground in a sitting position when a female who was on the other side of the street ran over to see if he was ok. She helped him up and he seemed to be ok. Another person who was at the bus stop with him began to talk to him as well. It was then that the bus I was on drove away.

When I got home, I told my mom what had happened. The situation reminded me of a run in my brother had with some thugs back in 1996. What made that particular day so memorable and awful at the same time was the fact that I had been admitted to the hospital because of Lupus for the first time. The day that my brother had this run in was the same day that I myself was being discharged from sick kid's hospital for the first of many times.

How disheartening that must be for a parent...being so happy to bring one child home only to have to take another one in. My brother wasn't badly injured..just a small cut on his head. But he did go in for observation.

This lead my mom to remember the story of when I had a seizure at home. I remember bits and pieces of the story as I'm sure I've mentioned this story on my blog already. However there are parts of the story that I did not know until today.

My mom told me that I was in bed...and wasn't feeling well. I remember not feeling well and having severe stomach pain. I don't remember much after that.

My mom told me that I was shaking...then I'd stop...then I'd start up again. The ambulance came to take me to the hospital. My dad rode with me while my sister drove my mom to the hospital. In the back of the ambulance, I'd go from being sort of okay to not okay at all. My mom told me that they had to stop the ambulance a few times to tend to me and make sure I was ok. When I got to the hospital, I was still seizing. Doctors upon doctors and nurses upon nurses were trying to hold me down. Straps were used to hold me down but I just removed them in my unconscious state of fits.

My parents were so scared. My dad left the room that they had taken me to and sat on the floor, crying. He was helpless. He then got up and called 3 family friends. He told them he didn't know what was going on with me. I don't think he's ever come straight out and told me this, but he thought he was going to lose me.

All this time, I was still seizing on and off while my blood pressure sky rocketed to dangerous heights. 250+ something over 170+something. They had tried everything they could think of but my blood pressure just wouldn't go down. All the uncontrolled seizing didn't help either.

Finally, they called in one of the doctors who was looking after me. He was a handsome gentleman who had come to Toronto from....I believe it was Australia. He had only come to toronto for a short time, then he'd be back to Australia to continue practising there. Dr. Craig came in and saw me in the state I was in. He was an honestly and truly caring person. He was surprised to see me in such a state, especially since I had just seen him the day before...and I was completely fine.

After exhausting every other option, it was decided that I'd be put to sleep for 3 days. I was given some sort of medication and off to sleep I went.

A nurse sat beside me for the next 3 days around the clock. When one nurse's shift ended, another one was there to relieve her. My blood pressure and vital signs were monitored closely. Various cocktails of blood pressure medications were given to me in an attempt to see which lowered my blood pressure most effectively. It wasn't easy as I seemed to be very resistant to many of the medications given. Eventually, the right combination was found and my blood pressure began to normalize.

When I woke up, my mom said that the first thing I said was "Mommy? Daddy?" My mom said that my voice sounded like the voice of an angel.




I remember my first seizure as well. This time I was in the hospital already, getting cyclophosphamide via IV. It didn't agree with me. My mom was getting ready to leave as it was getting late. It was then that I started acting weird. My hand started twitching and I became despondent. My mom let out a scream. Nurses and doctors flew in there seconds later. One doctor scooped me up in his arms and rushed out of the room, nurses following close behind. They took me into another room in order to revive/restablize me. My father came into the room as well but my mother had to stay behind. She had to wait 15 minutes to find out what was going on. My father came out and told her that I was fine and would stay in the ICU for a while.

I sometimes find it hard to believe that I've been through so much. There are so many people who have been through much less than I have and they aren't here anymore to talk about it.


I'm not only glad, but extremely thankful that I'm here to talk about it.

Thursday, June 26, 2008

I'm wearing a tank top

Not a fan of this Lupus unpredictability. I woke up this morning and felt alright, but as the morning progressed I began to not feel as great. My stomach began to hurt. I know that sometimes just eating something makes me feel better, so I ate breakfast. Didn't help. I didn't at that point feel like I was going to throw up, so I decided to quickly take my meds as opposed to waiting in fear. That was about an hour ago and I haven't thrown up.

I've also used some kaeopectate for my stomach, so it's beginning to feel better. I'm also waiting for the dialysis supplies delivery people. I hope they come soon because the last time they were going to deliver stuff, they called my in the morning to let me know what time they'd be coming. It is now almost 12pm and this worries me. I'm expecting another delivery in July, as I mentioned in a previous post, and I also have a doctor's appointment on that day. I was hoping that they would come early today, so that it might be an indication of when they'd come in July. My July appointment is at 2pm. Oh well, I might just email the secretary and see if there are any other clinic appointments.

In other news, I wrote a post previously about my feelings on the appearance of my fistula. Yesterday was a gorgeous day out and I was wearing a thin cotton blazer over a thin white t-shirt. I was still sweltering. Why am I doing this to myself? Yes, I'm not a fan of the constant questions, nor am I a fan of the strange looks, but....why am I doing this to myself?

Forget it. I'm wearing a tank top.

Tuesday, June 24, 2008

Florence - 2, Dialysis Supplies Delivery People - 0

I won the battle.

I can go to work tomorrow as I normally would, and my dialysis supplies will be delivered on Thursday. The hospital won't be getting charged any astronomical (and ludicious) fees, and nor will I. This is good news.

Now, the 3rd battle to be considered: due to the changing of my date for delivery of supplies, I'll need to receive another order on July 10 to merge onto that particular schedule. Ahh, just my luck. I have a dialysis clinic appointment at the hospital that day at 2pm. Now, the last time dialysis supplies attempted to be delivered to my house, the delivery people came to my house at about 11:30am. I'll have to see when the dialysis delivery people deliver my supplies this Thursday, as it might give me some insight as to when to expect my supplies on the 10th of July. Even if I do that...it will most certainly be the case that on the 10th of July they'll call and say they're going to deliver my supplies at 1:59pm. Bah!

Fistula- To Hide, or not To Hide, THAT is the Question

Ahh, the fistula.

My lifeline.

My Saviour.

My Fistula.

How can a thing of such beauty be such an eye sore all at the same time?

Let's face it. I'm a 20-something female who is often on the go. Like many other females (and many other people in general), I pretty big fan of wearing short sleeved shirts, tank tops, tube tops, etc. I don't do that very often now because of my fistula. I don't know if it's a fair statement to say that I'm ashamed of my fistula, as it is my lifeline. But let's be real here. It's bumpy, it's odd....downright weird looking. It's definitely going to stir up a bunch of questions...and I'm definitely not interested in repeating myself several times to educate people on my arm and why it looks that way.

Today was a nice day out....but I still wore a long sleeved shirt. When I got to work, I was jealous, yet not in the least surprised to see 2 of the 3 females sitting near me in the office wearing nice sleeveless blouses. I looked at myself, in my long Abercrombie and Fitch cardigan, and immediately felt jealous.

I've previously gone the route of wearing a cut stocking over my fistula when wearing short sleeves. Though I don't see that as being any different than attaching a neon sign to my left bicep with arrows and signage saying "PLEASE ASK ME ABOUT THIS RANDOMLY PLACED STOCKING ON MY ARM". While I would most certainly argue this point, wearing a stocking on my arm in the office might even be considered against the dress code! (I don't remember reading the no-stocking-on-your-arm clause in the dress code document we receive yearly, but I could be mistaken).

My dad brought this up in the car the other day. He said that I shouldn't feel bad or self-conscious about my fistula. I could simply cover it with gauze or with Mefix dressing (white dressing that comes in a roll, you cut it to the size you want, and you peel the paper off of the back to reveal a sticky part that can be applied to your skin).

True. I could simply cover it with gauze or with Mefix dressing. But that really wouldn't solve the 'i-do-not-want-to-draw-attention-to-myself" thing. I know I'd be inundated with tons of "Ohhhh! What happened???"'s at work which is exactly what I do not want.

I'm trying to figure out if I should just do the whole gauze thing and expect a plethora of questions for the next week or 2, if I should go back to the good ol' cut stocking, or if I should just skip all of that stuff and just go to work as I am. Or, of course, I can continue to torture myself and wear long sleeved shirts, cardigans, 3.4 length shirts, etc all the time.

This has always been a toughy for me. If there are any dialysis patients out there who happen to read this post, I'd be interested to know what your thoughts are on showing your fistula. I'm pretty torn!

Torn, and very very very warm in my long sleeved blouses.

Sunday, June 22, 2008

Gum Paste "Just Roses" Class @ Bonnie Gordon's

I took the Gum Paste roses class at Bonnie Gordon's school of cake design this weekend. It was a lot of fun and I learned a lot. I feel a lot more confident in accepting wedding cake orders now! ;-)


Here are some of the roses I made yesterday and today:






A Happy Camper I Am Not

As a dialysis patient, I need to order and get shipments of my dialysis supplies every so often. In a previous post I spoke about my dismay for an unnamed dialysis supplies company.

A quick recap of what happened there: The company called me the morning of the delivery and told me that they'd deliver my stuff between 1pm-2pm, so I went out in the morning. At 11:30am, a lady from the company called my cell phone and told me that several attempts had been made t0 make the delivery and I wasn't there. She asked if I'd like the order delivered the next day so I agreed.

Then, the next morning, the lady called me and told me that when a shipment delivery is made and is unsuccessful because nobody was there to accept the shipment, the hospital gets charged $100+, which usually gets passed on to the patient. Needless to say, I complained and nobody got charged $100+.

I placed an order for my new shipment on Thursday. I explained that I work on Wednesdays, which was the proposed day of delivery. The lady told me she wasn't sure if that could be switched so she called me back. When she called me back, she mentioned that the hospital might be charged $100 because the delivery could not be accepted on Wednesday. My jaw hit the ground. How can I be told that the hospital would be charged $100 when I'm telling her a week in advance that I won't be there to accept the shipment? You mean to tell me that that company only delivers products once a week?? I basically told her what I thought, and that such a policy is not only stupid but just plain silly. They can't deliver it on Thursday? Friday? Monday?? I explained to her that many people choose to do home dialysis because they have jobs, go to school, and participate in other activites that would require them to be out of the house. Just like her, I had a job that I had to go to. She told me that she "understood", but she'd still have to talk to Rose (my nurse) about charging $100.

Not in so many words, I told her that she was crazy. How can you say you're going to charge $100?? Does that mean that even though I told them I'd be at work, that they're still going to show up, knock on my door, nobody answers....and then bill the hospital? I know that there is the option of having a lock box as well, but I'm simply not comfortable with that idea either. This is all quite dumb.

I'm just waiting to see what happens and how this pans out...because this is absolutely idiotic in my mind.

Wednesday, June 18, 2008

June 2008 Monthly Bloods

Here are my lab results for the month of June.

*looks at hemoglobin value*

Excuse me while I call the lab. They definitely must have mixed up my hemoglobin with someone elses. Me?? Hemoglobin over 110 without having had a blood transfusion???



Sunday, June 15, 2008

47th Annual Rose Parade in Welland!

Today, my father (happy father's day!), my mother, my sister and I all went to the 47th Annual Rose Parade in Welland. It was great fun. George Marcello also came along. George is the CEO of step by step organ donation awareness, and also SOS 4000. Our participation in the parade was along with step-by-step organ donation awareness.

It was a good day. The weather was great, the people of welland are super friendly and really nice. I sat in the passenger side of my father's police van. Several people in the crowd waived to us, and several told me that I'd be in their thoughts and in their prayers.

I look forward to participating next year, and also in assisting in not only raising awareness about organ donation, but also in changing how we think about organ donation.

Here are some pictures from the parade:

























Saturday, June 14, 2008

Dear Lupus, You Smell. Sincerely, Flow.

First, I'd like to congratulate myself. Why, you ask? Well, this is officially my 100th post!

First and foremost, I'd like to thank God. I'd also like to my mother for keeping me thoroughly fed and comfortable, my father for having a great sense of humour and for letting me be his side kick and go wherever he goes, and both of my parents together for still calling me baby, the same way they did when I was 4 years old.

Ok, all jokes aside, this post is about Lupus. It's about Lupus and how much it smells.

Remember the other day? I was telling Lupus how weird it was. I had a sore ankle for such a long time, then it just went away. All by itself. Not that I was complaining....as I'm not a fan of pain. But still.....weird.

Now looky here. All of a sudden, I've been experiencing pain in my right hip area. Not cool, as I have avascular necrosis in my left hip and my right knee. I don't need problems in my right hip area too. It's also almost a pain in my lower stomach area too. At first I thought it might be my period or period pains. But so far, that doesn't appear to be it.

As a woman, I know I'm supposed to get a period. Rose, my home hemo nurse, suggested I continue with home hemo for a while and my periods should return. Since I haven't had one for a long time....I'm almost afraid to get it. I'm afraid that the wrath of my period will come and will have hemoglobin dropping results.

But I digress.

Lupus, you smell.

Like, smell really bad. Awful, in fact.

Thank you.

Friday, June 13, 2008

We All Have Problems...

Sometimes we get so caught up in our own lives that we often forget that we're not the only one going through things.

I hopped off the bus today in the afternoon after finishing work. I got off the first bus and got on the second bus which would lead me home. I heard the automated bus driver voice say "this is an express bus".

Ahh crap! I thought to myself. I was in such a rush to hop onn the bus that I didn't pay attention to whether or not this was an express bus. But then, if I got off a stop early, which I kinda planned to anyways, I can get my slurpee and walk the rest of the way home, about a 3-4 minute walk.

As I grabbed on to my purse and got ready to get up from my chair, I happened to glance at the lady sitting across from me. I knew that face.

"Yolanda?" I said as I looked at her. She looked up and smiled at me. "Hi dear!" she said. I saw her beginning to stand up as well. "Are you getting off here?" I asked her. She smiled and nodded. I extended a bent arm towards her so she could hold my arm as she got off the bus.

Yolanda isn't old....perhaps 50 years old or so. She was one of ladies that trained me when I got my first job. I was a cashier at an italian grocery store named Pusateri's. While I really loved my job then, when I look back on it, I'm not sure that I really appreciated what a great job that was. I think about it now, and really do appreciate it. I had some of the best times of my life there.

I haven't worked there in about 10 years. Yolanda expressed her shock and delight at the fact that I not only remembered her face, but also her name. I told her that while I'll sometimes forget where I had seen a face, I don't often forget the face. "And how could I forget such a beautiful face anyways?" I said. She smiled her cute smile and playfully hit my arm. We got to where we were going to cross the street when Yolanda looked up at me. She softly said "I haven't been at work since last year. I was diagnosed with cancer." She tilted her head back, exposing her neck. A large scar ran from almost 1 ear to the other, possibly where she had surgery to remove some sort of growth. "I also don't have any teeth in the front anymore." I could tell she was speaking kinda weird, but had no idea why. She didn't have any front teeth. I didn't want to pry and ask her exactly why that was.

I asked her where she was receiving her treatment and she told me Sunnybrook hospital. I felt awful. Don't get me wrong. I don't wish bad things upon anyone. But please, not Yolanda. She was so sweet and so kind. I felt the tears well up in my eyes when I noticed that the beige bucket hat that she wore was the shield her head...her head that did not have one strand of hair on it.

I held her hand and told her that I'd have her in my thoughts and in my prayers.

We crossed the street, Yolanda's arm still wrapped around mine. I pointed her in the direction of my house. Yolanda was going the other way. I told her to take care and that I'd see her soon. I'm not sure why I didn't attempt to get her phone number or something. So stupid of me. I guess I was still in shock.

I was happy to see that she was well enough to get out and take the regular bus to get around. Then again, perhaps she had no other choice.

Yolanda is such a wonderful woman. I hope that I'll get the opportunity to see her again soon so that I can do the right thing and get some sort of contact info from her. She's a great lady.

Obagi Clenziderm-Normal to Oily Skin - Day 15

So it's been about two weeks since I began using the Clenziderm system. The following are pictures that I just took tonight. I must say that I am still happy with the results I am getting so far. The only odd thing is that while the left side of my face seems to have cleared up almost completely where acne is concerned, I still seem to get pimples on the right side of my face. Perhaps I'm gonna have to pay more attention to my actions, such as touching my face, etc.

I had one person place a comment on my blog regarding my skin care regime. They has asked if I thought it was wize to use clenziderm on my skin. My answer to that is:
I've been prescribed many a product for skin care from my dermatologist. He hasn't at all been hesitant when it comes to prescribing products to me for skin care. The only thing I stayed away from where oral medications. I've done benzamycin, tazorac, differin gel, some vitamin A thing...eventually I gave up on all those crazy prescriptions. I'm quite confident and comfortable using this product on my skin as I have gone through the anticipation and subsequent disappointment of several different medications where results are concerned. I'm happy to be using a product which finally seems to be showing some results! Thanks for your comment, mysterious caring person.

Anyhow, back to the pictures: (LEFT PIC = BEFORE, RIGHT PIC = AFTER)










I'd say a slight improvement except for the last pic where, as I described, I developed some bumps. Let's see what happens next week! I buy my obagi on ebay for a lot less than I've seen it elsewhere. Click here and see for yourself.
 
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