Friday, February 29, 2008

Update - Gluten Free Blood Tests that I Did!

Today was a ridiculously busy day for me.

Yesterday was my final class for my Intro to Cake Decorating Class. It was design your own cake day. I was quite pleased with my cake and will post pictures from that day tomorrow. Before that as I had mentioned, I had people in my house all day doing what needs to be done in order to get my dialysis machine in here.

When I got home from cake decorating, I went to bed and got up again at 6:15am so I could go to dialysis. Since I had an appointment after dialysis, I had asked Rose (my trainer) to help me set up my machine, which she did. Since I had an appointment after dialysis (a hair braiding appointment to be exact), I planned on just falling asleep during dialysis so that I could be all nice and rested by the time I got to Kim (my hair braider)'s house. Not so.

Just prior to the Rachel Ray show finishing (about 10 minutes to 10am), Fabien, one of the dialysis techs, came to teach me about the water treatment system I'll be getting in my house. It's important to have a water treatment system because there's a lot of stuff in our water that definitely doesn't need to be in a dialysis machine shooting through my system (chlorine, minerals, bacteria, etc). Oh my freakin' goodness....this guy spoke from 9:50 - 11:45 STRAIGHT! I was literally fighting to pay attention/keep my eyes open. It's not like Fabien is unpleasant to listen to, but geez, when you're already exhausted AND on dialysis....it gets tricky! I managed to pay attention enough to be able to answer Fabien's questions, and even to correct him once when he said something wrong! He even said "I guess you're not as tired as you look!"

Yeah he was right. I was WAY tired-er.

Anyhow, when I first got to dialysis and saw Rose setting up my machine, I did a couple of things that she hadn't done yet so that they'd be ready for her, such as drawing the heparin into the syringe, getting my saline syringes ready for cannulation, etc. (Oh, I'm a cannulation PRO now! Yay!) As we set up, she told me that she had spoken to my doctor, Dr. Richardson (he's been away for about 3 weeks.)

There was some talk about me getting IV gravol to take home because I always seem to get nauseated while on dialysis. He didn't like the idea of sending me home with IV gravol. He said it was dangerous, it's never been done (with a home hemo patient is what I assume he means by 'never been done') and would rather I take oral gravol and possibly sleeping pills if the stomach cramps aren't allowing me to sleep. The pills don't work very well for me, and I also don't want to rely on "sleeping pills". I guess that's the way it is and I trust Dr. Richardson's judgement, but I hope he's just saying that because that's how it is and not because he doesn't trust me or something. On top of that, Doc Richardson is also confident that my stomach aches will subside after I start doing home hemo.

In the end though, drugging myself up with gravol everytime I'm on dialysis in the meantime isn't gonna solve the problem. Another doctor that helped me out and answered my questions in Dr. Richardson's absence suggested I do a test to see how my stomach/gastric system was working. Dr. Chan described the test and I told him I was interested. Basically the way this test works is this. I go in for the test, and before the test, they give me breakfast (eggs, toast, etc). The either put something in my eggs (as Dr. Chan said) or they give me something to drink (what another doctor said), then they view my stomach. That liquid which is either in my eggs or the liquid I drink directly has the ability to see how my digestive system is working as viewed by some kind of machine. It is said that some people who are on dialysis have a "lazy bowel/digestive system". This test will help determine if that is the case for me. If so, I'm not sure what the next step is. We'll just have to wait and see.

This test is the best way to go, especially since 4 of my gluten tests have come back and all are negative for a gluten allergy. Bah! There are still a few more left so I'll have to wait and see. Having a gluten allergy would definitely stink, but it would also be nice to get some answers!

Before the "eat some eggs and toast" test, I have to fill out a stomach pain log for 7 days. I have to rate the following questions, 0 being none and 5 being extremely severe:

1. Nausea (feeling sick to your stomach as if you were going to vomit or throw up)
2. Retching (heaving as if to vomit, but nothing comes up
3. Vomiting
4. Stomach fullness
5. Not being able to finish a normal-sized meal
6. Feeling excessively full after meals
7. Loss of appetite
8. Bloating (feeling like you need to loosen your clothes)
9. Stomach or belly visibly larger.


This is gonna be fun! :\

Thursday, February 28, 2008

Technicians, Plumbers, Electrician....bah!

What a stressful day!

Today was the day that my house had to get assessed for my dialysis machine. At 10 minutes to 9am, the first person came: the tech.

He briefly looked around my room and seemed pretty pleased with what he saw. He was happy with the fact that there was a washroom/water supply right in my room. He said that it made things a lot easier. We discussed where in my room would be best for the machine to go. He said that the machine should go on the left side of the bed, as that would be the side closest to the fistula in my arm. I agreed, however based on how my room is set up, putting the machine on that side is going to mean the removal/dismantling and re-assembly of my bed, or the temporary relocation of the tv in my room and the fridge upon which it rests.

Soon thereafter, the plumbers came. The main plumber's name was Joe, and his partner's name was Andrew. The came into my room and moved the big vanity typed thing that was against the wall which they planned to cut open. I told them that I was going to sit downstairs in the living room as I had no interest in watching them cut a hole in my wall, install pipes, etc.

Soon after I sat down, Joe called me upstairs. When I got there, he said "Why didn't you tell me that you're having problems with your pipes? It's plugged and water isn't draining down properly!"

I almost blushed. I never even thought of it. And so what if I DID tell him ahead of time? Was he gonna pack up and leave?

He told me that he'd try and fix it, but if he couldn't he'd have to call the hospital and ask them what they want to do, because if he couldn't fix it the way he was going to try, he'd need to rip the floor apart to get to the pipes to see what was going on. The fact that his bill was going to be charged directly to the hospital was the reason why he'd have to call them first....they may not be willing to pay for such a large job!

Thankfully, after about an hour and a half, both Joe and Andrew were able to find what was blocking the pipes. Joe came downstairs to where I was sitting holding a red bucket and asked me if I had a strong stomach. I said "NO!" but he proceeded to show me what was blocking my pipes anyways. It was hair. A whole bunch of hair. Thankfully not as gross as I thought. I followed Joe upstairs so he could show me how to use the water system that he had just installed for me. He also explained to me why the pipe was blocked and how he fixed it and it shouldn't happen again. I was pleased because our drains were no longer blocked, and also because it wasn't going to take a huge job of tearinig my house apart to fix it!

Earlier while the plumbers were working, Mark the electrician came. His visit was nothing more than an assessment, and he's supposed to come back next Friday. He was also pleased with the setup of my house and seemed to think that he should be able to do the job just fine.

What a stressful day! It was stressful because the plumbers and electrician were asking me stuff that I didn't know! Luckily everything worked out. My Dad wasn't home because he and my mother went to Niagara falls so that my dad could accept an award that he won (my dad is ALWAYS winning awards! :) )

Well I'm glad that's over. I look forward to getting all of this stuff done and finally getting the dialysis machine in my house!

Tuesday, February 19, 2008

Unwanted Relationships

I wrote a post a while back about lupus and relationships. The main idea of that post was whether or not love is possible with Lupus. The conclusion - of course!

My feelings on this topic varies. Sometimes I feel like I just want to be 100% ok with me before delving into any relationships. I think that is a fair thing to want. Other days, my opinion changes. With all of the things out there that can cause stress in a relationship....who would willingly commit themselves to a person with such an unpredictable disease? In the end, the more I ask myself that question I realize how many great people there are out there and are not bothered by such things.

Now what about unwanted advances from people who obviously WANT to be in a relationship with you?

I'm a nice person and don't know if I have it in me to just say "um..no I'm not interested", especially if this is person is supposed to be a friend. I'm also not wanting to lead anyone on in any sort of way.

It's especially annoying when people ask you all sorts of personal questions in an attempt to figure you out. These questions include things like asking you what your "boyfriend" would think of that, so that your response can be "teehee, I don't have a boyfriend!". I never give them the satisfaction of an actual answer and it doesn't matter if I do or don't have a boyfriend at that time. Especially at this time of the year, the questions can also include "oh, so what did you do for valentine's day?". HATE THAT.

I supposed I'm going to have to post an update as to the happenings of this particular story in my life. Stay tuned!

Also, i'd like to send a shout out to my girl. She a loyal fan of my blog and she always reads it. So, shout outs to you, NICOLE!! Luv u, girl!

Wednesday, February 13, 2008

Crabby McCrab & Jerky McJerk

Do you know who Crabby McCrab is? How about Jerky McJerk? Let me describe this person to you as I'm sure all of you have met both of them.... or one of them at the very least.

Have you ever been in the hospital, sick as a dog, only to have some wretched, "i-hate-my-life-and-my-job" nurse treat you like a piece of trash?

Have you ever been too ill to go to work for a good number of days? Then your boss calls you up demanding an explanation because the fact that you have Lupus and you're not feeling well simply isn't "good enough"?

Yup, I'm sure we all know these people because they exist in our lives. They're people who are angry at something or someone (not you) and they take it out on you. They're people who don't understand the plight of a person with Lupus. Oddly enough, many of these people who don't understand the plight of a person who is ill are actually hospital workers themselves. Wrong career much?

I could share many a story of my encounters with angry or insensitive people. I mean, I could discuss the nurse who overdosed me on cyclophosphamide causing me to go into seizures and nearly bite my tongue completely off......but that's different. She wasn't trying to be malicious....she simply wasn't paying attention to the doctor's orders. The doctor saw that I was reacting badly to the cyclophosphamide so he turned it off. This nurse came in, saw it was off, and decided to not only turn it back on, but to turn it onto full blast to make up for lost time. But no, that's not what this paticular post is about.

The time when I got so sick that I couldn't walk or move my legs really showed me the definition of vulnerability. I could do NOTHING by myself. Even reaching over to change the channel of my mini tv was a chore. I had to tell the people who called me to not hang up if the phone rang several times. It didn't mean I wasn't there, it was just REALLY hard to lift the phone to my face.

A couple of situations occured while I was in the hospital around that time. It was my worst hospitalization yet. First of all, I was on 60mg of prednisone a day. And you know what that means....late night munchies! Now being hungry while in the hospital is hard enough. Imagine being hungry in the hospital but not being able to throw on your slippers and go downstairs to the Tim Hortons and get yourself some timbits? At any rate, it was the middle of the night so I wouldn't have been able to do that anyways. Before my parents left that night to go home, they left me a mini box of cereal and a mini carton of milk. Opening the box and the milk and pouring them into the cup I was using as a bowl was extremely difficult. Eating my cereal with a spoon was nearly impossible...but I managed to eat about 1/3 of it by myself. When I couldn't do it anymore, I pushed my call bell so that I could ask a nurse to help me with the last few bites.

A nurse came in and asked me what I needed. I told her that I couldn't finish my last few bites of cereal, so if she could be so kind as to help me out. No word of a lie, she said to me:
"You want me to feed you? You can't feed yourself? You're so lazy!". It seems like something someone else tells you happened to them....but I never imagined hearing someone say that to me. Did she not know that I could barely move? She did feed me the rest of my cereal as I tried to hide the fact that I was sobbing. It didn't work out very well. It was about 12:30am by that time. I called home to speak to my Dad after the nurse left. I cried and cried and cried into the phone. My dad listened. He made me feel better.

A few days later, it was night time once again. Not being able to pull myself up in my bed, it wasn't uncommon for me to slide down in my bed and need to be pulled up by the nurses. On that particular night, two nurses came in to pull me up in the bed. After a 3 count, they both pulled me up in the bed so roughly and violently, they smashed my head into the headboard. I tried to reach up for my head but could barely move my arms. "Owwwww...." I said, a mixture of a yell and a cry. They both quickly left the room, never looking back. I sat there quietly in the room by myself, crying. Not only crying because I just got my head smacked into a hard object, but also the idea of being in the hospital, being paralyzed, and not being able to do a damned thing about it. Once again, I reached for my phone. Called Daddy. Cried.

You'd think I'd suffered enough during this visit. Not quite. On one thursday afternoon, it was time for me to go down to dialysis. When I got there, a nurse came and tried to put the needles in my arm. She wasn't getting it in the right spot. She poked and she shoved and she repositioned, all the while I was crying and screaming, squeezing the hand of one of the hemodialysis assistants named Eddie. Finally another nurse came along and decided that she would try. The act of her poking and stabbing at the fistula in my arm was even worse than the last nurse. I continued to cry out and scream while Eddie held firmly onto my other hand and watched in horror. Eventually, Eddie called out to another nurse. That nurse came along and made one slight adjustment. She then told the 2nd nurse who tried to put my needle in "Um, you had it in all along, all you had to do was pull back the syringe to see if it was in". Then nurse number 2 said "OH! I had it in the whole time! HAHAHAHAHAHA!"

Laughing. The sound of her laughter felt like flaming daggers dipped in acid piercing into my heart. How could she sit there and laugh when she saw me crying so hard I could hardly breathe? When I regained the ability to use my hands, I used these hands to type a letter of complaint and I gave it to that nurses' manger. They were both "spoken" to, and neither ever touched me or my fistula ever again.

This topic came to my mind as I had a run in with a crabby nurse today. I understand that sometimes people might be having a bad day, but this nurse is crabby ALL the time. For crying out loud, I have bad days too. But I work in customer service and all I do is speak to customers. I can't just take my anger out on other people...it's simply not their fault. In my opinion, if anyone has a reason to be indefinitely crabby, it would be me and other people dealing with an illness.

I choose not to. It might sound a bit cliche, but life is way too short to spend you life being miserable. If you don't like something in your life and it's within you control to change it, then change it! If you can't change it, then you had better make the best of it and not sit around feeling sorry for yourself 24/7. Seriously, it's ok to be sad, or down...or even crabby. But sheesh, don't make it your mission to be a sourpuss for every waking hour of the day.

My Dad shared some words of wisdom with me and I always keep it in mind:

What you can't change, don't let it change you.

Tuesday, February 12, 2008

SLE = A Gluten Allergy?

While perusing the net the other day, I came across a site that I found pretty interesting. This website implied that there was evidence that some people who have been diagnosed with Systemic Lupus Erythematosus may actually be suffering from a gluten allergy.

I remember a couple of years back, my naturopathic doctor put me on a gluten free diet. I wonder if she read this somewhere too? I know that after going on the gluten free diet, the stomach aches that kicked my butt on a nearly daily basis subsided. I only wish that I didn't get that perforated bowel and remained on the diet. But again, the lack of gluten in my diet was really causing me to lose a lot of weight.

The article goes on to explain a study that was conducted. The study consisted of 3 people who have had and were being treated for SLE for years. Apparently all 3 of these patients no longer experienced any of the symptoms of Lupus nor did they have any more abnormal lab results after going gluten free. It also states that they were able to disontinue their SLE medications too.

These 3 patients were found to have had antibodies in their blood against something called gliadin, which is a protein in foods that contain gluten. All 3 of these patients showed great improvement in their illness after removing that gluten from their diet. Some people have felt that gluten may be a contributing factor in SLE, but doctors don't generally take that into consideration when they're dealing with SLE patients. Kinda sad!

If you would like to read the article yourself, here it is: http://www.bastyrcenter.org/content/view/703/

This is a coincidence to me because just last week I asked my nurse to ask my doctor of there were any blood tests that can be taken to see whether or not I have a gluten allergy. Those tests were taken on Friday Feb 8, just a few days before I came across this article. When I discussed this with one of my doctors, she told me that even if the tests came back and said I tested negative for a gluten allergy, the blood tests weren't 100%. A scope of my stomach can apparently also help determine this. While I'd REALLY like to know, and I've done a lot of tests in my life, I simply don't do well with scopes. It doesn't matter WHERE that scope is going....I hate them! I was supposed to get a scope when I was at the hospital about a year ago and simply couldn't do it. As soon as I saw that thing coming for my mouth, I started gagging continuously. After a while they had to pull the thing out or else I would have choked to death! I can't remember now, but I think eventually they had to sedate me.

Well, in the name of finding out whether Lupus and gluten are someone connected, I think I had better start up on that gluten free diet again. But I think I'm gonna wait for tbose blood results to come back....which can take anywhere from 1 to 3 weeks! :-(

This could turn out to be a very interesting experiment!

Sunday, February 10, 2008

Never Knowing What to Expect in the Morning

Those of you with Lupus know what I'm talking about.

Do you ever go to bed at night, feeling tired but otherwise perfectly fine....then wake up in the morning with a terrible stomach ache, a splitting headache, paralyzing fatique (and not just the normal fatigue that some people get when they've just woken up...and will eventually fade away)?

I don't get headaches too often, so I don't worry about that too much. But today I woke up with a stomach ache and that general feeling of "unwellness".

I woke up a couple of times at night, and that isn't unusual for me. I felt fine then. But around 8am when I woke up, boy did I feel crummy. I was actually woken up by the sound of my father entering my bedroom with a tray of breakfast. My dad usually brings me breakfast on sunday mornings and I sincerely appreciate that and him. But THIS time, when you wake up with a stomach ache and are met with a tray full of oatmeal, toast, eggs....simply not what I wanted to see or smell. I choked down 2 of 4 slices of toast, a couple of bites of oatmeal, annd all of my tea. I quickly took my morning meds before a real feeling of nausea kicked in. I managed to keep all of the meds down and didn't throw up.

One of the most frustrating things about Lupus (and many other diseases I'm sure) is the daily unpredictability of it. I must admit, every single day I have some degree of unwellness, be it fatugue, a stomach ache, etc. But some days are better than others. It makes it difficult to make plans because you never really know how you're gonna feel 3 months from now, a month from now, a week from now...even a day from now.

I'm always singing my employer's praises, and it's definitely deserved. I couldn't be more lucky to have a job that is so understanding of my illness. But one thing that always crosses my mind is my future career. My goal is to get into the Human Resources field. While there are several different jobs in HR, obviously one of them is interviewing job candidates. Can you imagine looking forward to an interview for a job you've always wanted...only to be called the day of the interview by someone in the company telling you your interview will be re-scheduled because the HR rep who's supposed to interview you is ill. How crappy would that be?

The job I have now doesn't really have any specific deadlines that I have to take into account when I enter the office, but my future job will. I haven't decided if I actually want to get into the part of HR where you interview people since there are other areas too like payroll, benefits, creating job postings, checking references, putting together acceptance packages, etc. I just hate the idea of letting people down or missing deadlines because of my condition.

When I turned my laptop on this morning and logged onto facebook, it became clear to me that other people on my list with Lupus weren't feeling 100% either.

One person's facebook status was {insert name here} is so sick. I hate puking.

Another person's name was {insert name here} feels like crap, freakin' Lupus (shakes fist in the air).

I knew I didn't feel well either, but I opted to make my facebook status say: Florence wishes there was an application to block people from inviting you to join applications. Not exactly discussing how I felt physically, but also stating something that annoys me. :)

As I'm used to, I picked myself up and did some math homework. If I never did homework when I wasn't feeling I don't think I'd ever do homework. But, as it usually does, that feeling of unwellness slowly faded away.

So I feel fine now, but I wonder what tomorrow will bring..

New Blog Layout

I hope you guys like it! I personally think the animated butterfly to the right of the screen is pretty snazzy. (note to self: use the word 'snazzy' more often)

;-)

Saturday, February 9, 2008

Cake Decorating Class - Class Number 1!

My first cake decorating class was this past Thursday evening. It was a lot of fun. The act of getting there, however, was not so fun. My mother had not returned home from work and I had to be at class by 6:30pm. In fact, I had to be there a little bit earlier than that as I had to pay for my course and I also had to buy my palette knife.

I got on the bus and went to the subway, at which point I got on the train and went to the correcct station. I didn't want to take the chance of getting lost, so I called the TTC (Toronto Transit Commission) before leaving in order to get directions on how to get to the school. I got on the bus and got off at the correct stop. When I looked around, I saw nothing except houses and snow! Luckily there was a lady standing at the bus stop so I asked her for directions. She pointed me in the correct direction.

The only problem was the fact that there was still so much snow on the ground from the snow storm. The sidewalk was unshoveled/plowed and the snow reached my mid-calf. To get to the school from the bustop, I had to cross a busy street and walk up a hill. I didn't want to j-walk, so I walked to the crosswalk. It was only a few feet away, but I had to walk slowly and carefully as I didn't want to fall in the snow. And, as you may or may not know, walking or running in tall snow is much like walking or running in water: it adds resistance, and is therefore more of a workout.

By the time I got the the crosswalk, I was exhausted. I was glad that the light was red because it would allow me to take a breather. The light turned green and I crossed the street. Luckily there was a gentleman crossing the street at the same time, so I followed him as he walked so I could walk in his footsteps in the snow.

When I got to the bottom of the hill, I decided that I had two options. I either had to walk on one side of the road which was completely full of snow, or I'd have to cross the street and walk up the hill on the road which didn't have snow. I opted to walk on the road, but because I didn't want to interfere with cars (there were no cars coming at the time), I decided that I had better run up the hill. Bad mistake!

The school was in a plaza right at the top of the hill. When I got into the school, I was deathly exhausted. It was cold outside, but I was starting to sweat. My stomach hurt so badly that I thought I was going to throw up. After entering the school, you are immediately in the supply store where I would be able to buy my palette knife and pay for my course. I went the the palette knife section and listened as one of the store's staff discussed the best palette knife to buy to another student in my class. I listened patiently for a few minutes and decided to just grab the palette knife that I saw her motion to. The man who was speaking to the lady working in the store was asking way too many questions. Had I been feeling 100% I may have stood there and listened, but I simply wasn't in the mood.

I turned around and headed to the checkout line where I would pay for my palette knife, pay for my course, receive my tax receipt, and receive my discount card for the store. Ugh...the line up had 4 people in front of me, and each person takes about 5-7 minutes. I was standing there totally thinking I was going to fall over. I finally got close enough to the front of the line to be able to lean against the desk. I kept on interlocking my fingers and putting them in the air to stretch hoping that the stretch would make my stomach feel better. It didn't.

When I finally got to the front of the line, the lady who had a "training" button on asked me for my last name. I toldd her my last name and she punched it into the computer.

"That'll be $150". She said. The cost of the entire course was $150, but I had paid $75 already as a deposit. I knew that it had been paid because there was a transaction on my credit card stating that it had been paid. I politely told the lady that I had already paid half of the price and only had $75 due.

"Oh...umm....ok" said the confused clerk. She asked the cashier beside her for help, but that cashier was busy helping another student complete registration for the course. She told me that she'd be right back and walked away.

"Ughhh......not NOW!" I thought to myself. All I wanted to do was remove my heavy jacket and scarf, sit down and put my head in my lap so I could catch my breath. Yeah....remove my jacket. I quickly removed my jacket and decided to hold it. I was seriously afraid that I was going to pass out and they would call an ambulance!

Finally after a few moments the clerk that was helping me returned to the desk with the staff member who was educating us on palette knives earlier. The staff member simply punched a couple keys into the computer and informed the training clerk what she had done wrong. I quickly paid the $75, signed my name on my discount card, and paid for my palette knife. I grabbed my palette knife, credit card slip, discount card and tax receipt and high tailed it out of there. I went into the class which already had quite a few students seated and ready to go. I sat down for a minute and decided that I couldn't possibly sit here and put my head down.

I grabbed my jacket and my purse and headed for the washroom which was downstairs. On my way downstairs, I was delighted to see coat hooks, so I threw my jacket on a hook and headed downstairs. There was only one washroom and luckily it wasn't being used. I locked myself in the washroom and closed the lid of the toilet. I sat down, put my head down, and took slow, deep breaths. The washroom was nice and cool. I was beginning to feel better already. Two people tried to open the door as it isn't very obvious that someone is in there when the door is closed. I told them that "someone is in here".

I stayed in there for about 5 minutes and I felt much better. I still didn't feel 100% but class was starting soon. I sprinkled a few drops of water on my face. Had I not been wearing makeup, I would have given my face a big splash of water, but I also didn't want my makeup to look all smudged when I got back to class!


The class was more full than classes usually are at that school. There were about 16-17 people with two instructors. After sitting in my seat for 5 minutes, I was 100% better. I've felt that way before, but usually I'd have somewhere to sit or lie down right away, be it in a car in at home in my bed. Now I know to take it easy. Had I just walked, I may have been 5 minutes late or so, but I wouldn't have risked becoming ill, throwing up, being forced to go to the hospital...all that bad stuff.

The class was 3 hours long. We spent the first day working on our piping skills. We learned how to pipe stars, roses, shells, ropes, bows, etc. Our two instructors also did a demonstration on building a 3 layer cake. It was flavoured with lemon buttercream. I'm usually not a fan of things that are TOO lemony, but it was a very delicious cake. I was seated in between two women. The lady on my left seemed to be really good. I think she's done this before. With the way this school works, you can take any level you like just as long as you have experience (any level meaning intermediate, advanced, etc.). However, if you start with the beginner level, then intermediate, then wedding cakes, you cannot get the master cake decorator-basic level certificate. There are other courses to be taken that can make you a " master decorator intermediate" cake decorator and "master decorator advanced". But you cannot get any of those without starting at the first class, which is what I suspect this lady was doing. The lady on my right was an older european lady who didn't speak english very well. She came to class late and didn't have time to buy a palette knife. She helped herself to mine. I didn't mind, as all I was using the palette knife to do was to scrape the royal icing off of my cutting board. We all practiced piping on a cutting board. After our cutting boards got too full, we'd scrape the icing off our boards and put it into a bowl.

Today my mother and I went to the grocery store so we could buy icing sugar. I want to make royal icing so that I can practice piping. I really enjoyed the relaxed, helpful, and laid back atmosphere of the class. I'm definitely going to take the next level too.

So, aside from almost collapsing after running up a snowy hill....(LOL) I really had a good time and I'm glad I decided to take the course. On the last day of the course, we get to utilize the skills that we've learned in the previous 3 weeks to decorate a cake of our own. I can't wait! I'll be sure to post pictures of my final product after I make it.

Thursday, February 7, 2008

Not Letting Lupus Take Over Your Entire Life!

I know how difficult it can be to not let Lupus consume your entire life. I've said it before, and I'll say it again. When you have one of those disease where you "don't look sick", it's sometimes hard for other people to understand that you're tired, or you're not up for doing something with them, etc.

There are tons of things we need to do that occupies a lot of our time. For me, while I always do my best to be "normal", I also have to sometimes convince myself to slow down and take it easy. If you're anything like me, that in and of itself is one of the most difficult things to do.

If you're like me, you're probably a walking, talking pharmacy. Have you ever had a friend say something to you like "I have to take prednisone for ", and your response was something like "Oh, prednisone is an immunosuppressant drug that........"? I've definitely done that. I've had plenty of people tell me I should be a nurse, a pharmacist, or even a doctor. Aside from the fact that I have no interest in being in school for a kabillion years....I also have no interest in being in hospitals for my career. I think I've seen more than my fair share of hospitals thus far, and who knows? There might be more to come.

Now that being said, I spend so much time on Lupus-related stuff, like sorting my medications into pill cases so I can take the correct medications quickly and easily, going to dialysis and them coming home and going to bed right after because I'm tired (hopefully that'll subside after I'm done my home hemo training), the need to simply just rest.....the list goes on and on.

A couple of weeks ago, I was lying down watching TV. Out of the blue, something occurred to me. Aside from Lupus related stuff, what is it that I do to make ME happy? My "Lupus related activities" include going to dialysis/dialysis training, going to physiotherapy, going to massage therapy, and keeping up with all of my doctor's appointments. When I'm not doing either of those things, I'm probably working on an online math course that I'm taking, working part time...and that's about it. I'm taking the math course because I need it for university. I do slightly consider going to work something for "me", because it gets me out of the house and allows me to socialize with people who aren't doctors or nurses. But what is it that I have that is completely separate and 100% something that I want to do just for me?

Nothing.

I thought back to 2001. I graduated from high school and went on to college. I took chef training. Let me tell you, that was one of the best experiences of my life. I admit that in the long run, working in a hot and busy kitchen with little or no breaks, especially with my condition, just wasn't for me. One of the Chefs I did co-op for told me that while I was a good cook, I should also consider working in the front of the house in the future (server, hostess...maybe even manager). I've always loved pastry, but didn't have a positive pastry experience at co-op. The girl who was in charge of the pastry for that restaurant was very condescending, rude, and not at all helpful. Instead of showing me how to do something, she would just tell me to "do it", and when I did it incorrectly, she would simply say "move over, I'LL do it". She was a real downer and she hurt my feelings a lot. The worst part was that she wasn't much older than me, so for her to be so rude and jaded at such a young age wasn't very encouraging either.

So after a few years I went back to school and now I'm taking Human resources. Despite having such an unpleasant experience working in the pastry department of that restaurant, I still really enjoy pastry and baking. So that day last week, I decided to take a cake decorating class.

I'm starting with the beginner's course as I haven't done anything pastry/baking/decorating related in over 5 years. The course is once a week for four weeks. Each class is 3 hours long, and my first class is today! I'm pretty excited and I'm not sure what to expect. If I really like it, I'll definitely go on to intermediate cake decorating, and then advanced. I also plan to take the other specialized courses including the Wedding Cakes course, Australian method, etc.

So, my point is this. I think it's extremely important to have something in your life that's just for YOU. It can be a weekly art class, a book club, volunteering, joining a gym...anything!

Tuesday, February 5, 2008

Mycophenolate Mofetil - The Anti-Rejection Drug of Champions

First of all, I'd just like to mention something that I found funny. I have a site counter on my blog as you may have already noticed. This site counter also tells me if people google something and are brought to my page. I was looking at it just a few minutes ago and I noticed that somebody googled "I hate lupus" and my blog came up. I thought that was hilarious!

Now, back to business.

Mycophenolate Mofetil. I bet there are some people out there who take a bunch of pills simply because their doctors told them to. I bet most doctors even tell you what the drug is for...but sometimes when a doctor is giving you a whole bunch of information, and you're trying to process that as well as the fact that you have to take medication to begin with....it can all be overwhelming.

Mycophenolate Mofetil is essentially a anti-rejection medication. It is given to patients after they've received an organ transplant.

When it comes to Lupus patients, Mycophenolate Mofetil (MMF) is a fantastically wonderful drug. While this drug's first and main indication was to be a steriod-sparing immunosuppresant for those who have received transplants, it's becoming more and more prescribed to Lupus patients as well. Since Lupus is an autoimmune disease, and mycophenolate is an anti-rejection medication, it seems to work well with many Lupus nephritis patients in suppressing the immune system from damaging the kidneys.

For someone like me, MMF came around at just the right time. The previous Lupus medication that I had just received was definitely being stopped (cyclophosphamide) due to all of the terrible side effects I had experienced....ya know, the seizures, the "i-almost-chewed-my-tongue-right-off" seizures. MMF was the perfect alternative for me. When my doctor at sick children's hospital first suggested it, she also had to write a letter to ontario health, because MMF was only being subsidized for people who actually had an organ transplant, and I hadn't. Luckily it was approved and I didn't have to spend hundreds and hundreds of dollars to receive it! Not to mention the fact that MMF does an excellent job without the horrid other side effects that one can look forward to while on cyclophosphamide (i.e. bleeding of the bladder, infertility, bone marrow issues, and so forth).

Now, with any other wonder drug, you're always gonna have to take the good with the bad. The side effects of MMF include nausea, diarrhea, infections, vomiting, infections, anemia, etc. At one point I was on 1000mg of MMF twice a day and it lowered my white count. My doctor reduced it to 500mg twice a day and my white count went back up to where it should have been. So that's something to look at as well because MMF can sometimes do that too.

So that's MMF! Any questions? ;-)

Friday, February 1, 2008

Home Hemodialysis - 8 Classes Later

As per my calculations, it's been 2 and a half weeks since I started doing home hemodialysis training (or 8 training classes). According to Rose, my trainer, I'm doing pretty well. She seems to think that I'll be ready to go at it by myself in 6 weeks, or by the end of February I guess.

The idea of doing dialysis at home and having my days free is pretty exciting to me. It's a feeling I haven't felt in a long time. I would have loved to NOT have to train for home hemodialysis and to have just gone straight to transplant. But there has been so many plans to go ahead with transplant and something always seems to come up, be it me getting ill on more than one occasion, or this time with my father having slightly elevated blood pressure levels. It's becoming more and more apparent to me that perhaps this hitches keep coming a long for a reason. Perhaps I'll get my transplant...but just not now. I guess the man upstairs isn't ready to see me get a kidney (or perhaps isn't ready to see my dad donate one).

Now I seem to be doing pretty well with setting up the dialysis machine and such. That was one of my main worries...the whole damned thing looks so complex and complicated. But the home dialysis training unit created this instruction binder with full page sized pictures each step of the way. It's really helping and I can pretty much set the machine up without supervision.

The problem that I seem to be having now would have to be cannulating myself. For those who don't know, cannulating oneself is just fancy for "sticking dialysis needles in my arm". I have two bumps on my arm which were caused by several nurses sticking needles in it. I've been told several times that it's better to put your needles in yourself as it'll hurt less, and since you're the one doing it, you'll be putting the needle in at the same angle all the time. It's much better for you. When I was still doing in-centre dialysis, some nurses tried and tried to get me to cannulate myself. It simply wasn't something that I was interested in. I do consider myself independant, and I like doing things for myself, but this certainly wasn't one of them. The idea of sticking a needle in my arm didn't seem to sit well with me. I was also afraid that I'd shove the needle in too far or something and botch my arm up majorly.

Rose is teaching me a cannulation technique called "button-hole". It basically consists of sticking the needle in the same spot day after day. When you're ready to dialyze, you clean your arm, soak the scab that has developed over the hole that you stuck the needle in the day before, use a needle to gently pick the scab off, then put your new needle in the exact same spot. Sounds easy enough, but I'm still struggling with it a bit. My needles didn't used to hurt going in because the nurses used to put them in vaguely the same area. But now that we're doing the button hole technique, we couldn't use the same spot that all of the other nurses were using. We have to give that entire area a chance to rest. So, we had to start a new spot. Breaking fresh and uncalloused skin hurts! Plus, these needles aren't a joke...they're pretty big!

So today I put my needles in and it wasn't the best. The bottom one went ok, but the top one didn't go as well. When I put it in, it hurt more than I know it should have. When we started dialysis, it became apparent that the needle was touching the wall of the fistula or something, because the machine was showing higher than normal venous pressures. So, in the end, Rose had to put another needle in on top. We left the not working needle in and just switched the tubes. we did that for a couple of reasons. One was that the tape that was used to secure that needle was overlapping my bottom needle, and if I removed the non-working one, the good one would probably go with it. Secondly, I had already received some heparin, and if I removed the non working needle, I'd probably bleed forever. Well, perhaps not forever, but for a very long time nonetheless.

When I got home, my arm was pretty sore from all the poking around so I iced it for a while. It feels better now, and I'm sure it's ready for another poking on Monday.

Below are two pictures of my poor, tortured arm. If you can see the red circles, the one on the far right is a circle that is around my bottom button hole site. The middle circle is my top button hole site. The circle on the left is the new hole that Rose had to poke in me when the middle button hole decided to be fussy. Oh, and I know you're jealous of my penguin pyjama bottoms. ;-)





 
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