Monday, December 31, 2007

Tips on Dealing with Lupus!

Lupus is often considered one of those "but you don't look sick" diseases. In many instances, when those with Lupus aren't going through a Lupus flare, they physically look fine. While research for this debilitating disease has improved to the point where people with Lupus can still live long and prosperous lives, Lupus is still a major illness that not only needs to be monitored, but needs to be taken seriously.

Lupus is a chronic inflammatory disease that can affect many parts of the body, including the kidneys, the heart, lungs, skin, and even the central nervous system. To put it simply, the immune system seems to get confused and cannot tell the difference between your own cells/organs and foreign ones. The immune system's response is to attack those "foreign invaders of your body", even though these cells/organs are not foreign and are actually your own. This causes inflammation, and medication is required to minimize the immune system's response.


There are several symptoms associated with Lupus and this often makes it difficult to diagnose. But once you ARE diagnosed with Lupus, it's important to look after your body. As a person with kidney disease caused by Lupus, I've had more than my fair share of ups and downs. If you know anything about Lupus or any other autoimmune disease, you'll know that there are certain things that you should and shouldn't do. An important part of figuring that out is listening to your body. Putting some of those obvious things aside, here are some tips I can give about taking care of yourself while living with Lupus.

1) Take your Meds!
Hmm, that seems pretty obvious, right? Wrong! With a disease like Lupus, there are times when you'll go through extreme highs and extreme lows. There are times when I'm so paralyzed with fatigue that I can barely get out of bed. Who knew that only a few short weeks after that, I'd be spending the day at an amusement park, running around and having fun? That being said, most Lupus patients are on a plethora of medication in order to keep their disease under control. That being said, it's important to remember to always take your meds! Some people have the false mentality that they can reduce or even stop taking their medications because they "feel better". Trust me, the reason you feel better is most likely due to the medications you're taking in order to control the Lupus. Never stop or reduce your medication without first speaking to your doctor.

2) Your body is a temple!
This doesn't just apply to those with Lupus, but to anyone and everyone. Your body is a temple! You get out of it what you put into it. So eat GOOD food. Eat your veggies and eat your fruit. If you have kidney disease, it's also important to limit foods with high phosphorus and high potassium. When it comes to fruits & veggies, some good choices are:
  • grapes
  • apples
  • pears
  • plums
  • watermelon
  • berries
  • peaches
  • carrots
  • garlic
  • broccoli

Some not-so-good choices include:

  • orange/orange juice
  • cantaloupe/honeydew melon
  • dried fruit
  • potatoes
  • pumpkin
  • beets

I've always been a strong advocate of "everything in moderation". Don't deprive yourself of anything, but don't go overboard either! I myself am on a specific diet, but I'll discuss that at another time.


If you're on prednisone, especially if you're on a high dose, remember to limit your fluid and sodium intake. If you don't, you'll wind up looking like a blowfish.


The outside of your body is important too! I can't stress this enough: moisturize, moisturize, MOISTURIZE! I've suffered from many an episode where my weight has ballooned up, and then returned back to what it previously was. And large weight fluctuation in a short amount of time = stretch marks! Make sure you moisturize daily, or even twice daily, in order to keep those stretch marks at bay. It's also essential to wear a high SPF sunscreen when you're going to venture out into the sun. I wear an SPF 50 at the very least, and I also try to wear clothing that covers my skin when I'm out in the sun too.


If you have problems with your joints or with mobility, it's very important to see a physiotherapist as well. This helps strengthen those tired and sore joints so that you can regain some of that mobility again!

3) Be honest with those around you!
It is important to be honest with those around you, including your family, your friends, your school, and/or your employer. It's not a good idea nor is it beneficial for you to hide how you're feeling or to hide your limitations. It's ok to say no to that family gathering, and it's ok to say no to a night of clubbing with your friends. It's ok to take some time for yourself and just relax. If you're in college or university, register with your school's disability office and let them know about possible extensions or accommodations that you may need. Don't be afraid to speak to your employer too. My employer allows me to work reduced hours and take breaks as needed. They even got me a snazzy new custom fitted chair for my desk! It's ok to ask those around you for help. Don't let your pride prevent you from doing this, because your pride may lead to additional stress and Lupus does NOT like stress.


4) You are your best advocate

Don't get me wrong. I love all of the medical professionals in my life. They've done so much for me and have helped me in so many ways over the past 11 years. But remember, just like anyone else, these medical professionals are only human. You have to make sure that you know what medications you're on. You also have to know what they look like, and know the doses. A little book in your wallet will do. While admitted to the hospital, I've been accidentally given the wrong pills on more than one occasion. Never in any of those instances have I consumed the wrong medication. If there is something that doesn't look/seem right or something that I don't recognize, I ask questions. I used to have the "but I don't want to irritate/hurt their feelings" mentality, but face it: this is your health we're talking about here! I've also had doctors I've never seen before come in and start adjusting/stopping/starting all sorts of medications. How can a doctor who's read my chart for 10 minutes know enough about me to start adjusting everything? ASK QUESTIONS!


Remember to discuss any illnesses you may have with your doctor. By illnesses, I'm referring to a cough, sore throat, flu-like symptoms, etc. Keeping your mouth shut about things that may seem minor or trivial can quickly snowball into something more serious, like *gasp* an infection! Our immune systems are already compromised due to all of the medication we're on. Trust me, the LAST thing you want or need is an infection!
Lupus may be a part of your life, but it doesn't define who you are! It's important to know your limitations and listen to your body, but don't let Lupus stop you from doing what you want to do, going where you want to go, and most importantly, being who you want to be!

The Dialysis Machine of my Dreams!





There's no point in trying to tip toe around it. Dialysis stinks. It's long and it's irritating. It's exhausting. And dialysis patients? Honestly? I loathe being around 90% of them. I don't expect people with an illness or a disability to be smiling and happy all the time, but many of those people are miserable. I hate being around people who are miserable.


I posted something the other day about home hemodialysis. I definitely think it's a good idea. But while it would save me time from having to go to and from the hospital, and also from wasting my days, it's also time consuming.


Yesterday while perusing the internet, I found something very intriguing. One of the many sucky things about being on dialysis is going on vacation. I can never just go on a spur of the moment vacation. I have to plan ahead and make sure that there is an acceptable dialysis unit there for me. Aside from that, I have to pony up the money to pay for dialysis. Yes, OHIP will reimburse me up to $210 per dialysis treament, but the operative word here is "reimburse". I have to come up with that money in the first place.


Wouldn't it be great if there were some sort of portable dialysis machine that I could take with me on the road? Then I wouldn't have to worry about paying for dialysis or finding a unit. I also wouldn't have to worry about what time I'd have to go to dialysis. When you're on vacation, going to dialysis right smack in the middle of the day is a total bummer. It writes off the entire day.

While surfing around on the net yesterday, I came across a dialysis machine that's *gasp* small AND can be taken on vacation. It's called the NxStage system one. It's portable, it doesn't require any special plumming modifications, all the fluids and bags and such are prepackaged, which makes things quick and easy, and it's EASY to use. On average it takes 1-3 weeks to learn how to use it...i guess it all depends on how bright you are.


This new machine was approved by health Canada back in 2005, but surprise surprise: it's not currently being marketed in Canada. It's only being marketed in the United States. Kind of irritating. Why is Canada always one of the last people to get new and cool technology?


Well as soon as I saw this machine I emailed the company. I also emailed my childhood nephrologist @ Sick Kids Hospital Dr. Harvey. She's good at finding stuff out. Man, next to an actual transplant, if I could get my hands on this thing.....well....let's just say I'd be pleased.



Here's the link to the NxStage One Dialysis machine: http://www.nxstage.com/chronic_renal_care/products/index.cfm

Saturday, December 29, 2007

My Journey - The Short Version

Lupus hit me in a strange (and quick) way. I had just graduated from grade 8 and was on top of the world. I was voted class president and had been selected by my peers to address my graduating class as the valedictorian. There wasn’t a sport or a club that I wasn’t involved in. As a graduation gift, my parents bought me a brand new bike, which I rode throughout the city every single day of that summer. Who knew that the November following that very summer I’d be so paralyzed with fatigue that I had to crawl from my bed to the washroom?

I had only been in high school for 2 months when I got ill. I told my dad that I was going to stay home from school, something that I did NOT like doing. But I was so weak, so tired, that I literally had no choice.

As the days went on, I grew weaker. While I was barely eating anything, I seemed to be gaining weight. After 3 days, my parents decided that it was time to take me to the emergency room. After several tests, I was finally diagnosed with Lupus Nephritis. I was put on dialysis right away. All of the weight I had gained was water weight due to my ailing kidneys. Little did I know what else was in store for me.

After much discussion amongst my doctors at Sick Children’s hospital, it was decided that it would be beneficial for me to receive a medication called cyclophosphamide. This medication has proven to be beneficial in people with autoimmune diseases. Unfortunately, it wasn’t beneficial for me. Soon after receiving the medication intravenously while in my hospital bed, I remember having a terrible, terrible stomach ache. Then…darkness.

I woke up 3 days later. The first person I saw was my father, sitting on the edge of my bed, smiling that huge smile of his. I noticed a bandage on his lip. When I opened my mouth to ask him what happened to his lip, I felt a terrible pain throughout my entire tongue. I came to realize that 3 days before, I had a bad reaction to the cyclophosphamide and I had a seizure. While the seizure only lasted a few moments, during the course of the seizure, I managed to bite my tongue several times without even knowing it, and I also managed to hit my dad in the face while he was trying to hold my thrashing arms down.

I managed to recover from that episode. In fact, I got so much better that I was able to get off of dialysis. I went on to finish high school and college with only a few hitches along the way. I decided that I wanted to go back to school and study business, so I enrolled in university and was ready to go. Just one week before I was to start university, I had another bad Lupus flare. This flare was so serious that my previously surviving kidneys had begun to fail again. They failed to the point where I had to resume dialysis.

Months had passed and dialysis had become a fact of life for me, so I started to organize my life around it. I continued to go to school part time and work part time as well. I did this for a year…until I got ill again.

My sister took me to the emergency room in the evening where they did all sorts of tests. Before the sun rose, I could no longer walk. I couldn’t move my arms. I was completely paralyzed on both arms and legs.

I was scared. I wasn’t necessarily scared because I couldn’t walk, but I was scared because I seemed to be losing control of my own body. I couldn’t feed myself, nor could I answer my own phone. When I spoke, I couldn’t seem to speak quickly. My speech was slow and slurred. I drooled when I spoke. After much testing, I was told that a growth had developed on my brain, most likely to Lupus.

I began aggressive drug treatment with a steroid called prednisone. In the meantime, I had to learn to do everything again. I had to learn to walk. I had to learn to use my arms. I had to learn to eat by myself, to go to the washroom by myself. I had to re-learn everything.

After a month, I was allowed to go home. I was also put on a waiting list to go to rehab in order to help me learn to walk again. The waiting list was about 2 months long.

I wasn’t prepared to wait 2 months to learn to walk properly again. When I got home, I did my own physiotherapy everyday. I walked up and down the stairs in my house. I did strength training. I did everything. Much to the shock of all of my doctors, I can do everything that I was able to do before. A month and a half after I became able to walk again, I received a letter in the mail telling me that a space had become available for me in a rehab clinic. I threw the letter in the garbage.

So here I am today. I’m 25 years old now. I’m on dialysis and I’m waiting for a kidney transplant. I work part time and I go to school part time too. I’m also actively involved with Step by Step organ transplant association. According to many people I know, I don’t “look sick”. Well, I’m glad I don’t look sick, because I’m not. I may have Lupus, but as you can see, while Lupus may try, it DEFINITELY doesn’t have me.

Wednesday, December 26, 2007

Home Hemodialysis

Everyone keeps saying that home hemodialysis is the way to go. I've always resisted doing/training for home hemodialysis. In a way, I guess I always kept my fingers crossed in hopes that perhaps there would be some sort of divine intervention and I wouldn't need dialysis anymore. That...or I'd get a transplant. Since neither has occured yet, I have to consider my life and the quality of it right now.

I've said it before and I'll say it again. Going to dialysis 3 times a week sucks. It's tiring, it's LONG, and it's draining.

If I did dialysis at home, I'd hook myself up to my dialysis machine about 4 or 5 times a week right before I go to bed. The dialysis machine would run all night while I sleep. When I wake up in the morning, I'd simply disconnect myself from the machine, then continue on with my regular daily activities.

PROS:
  • i don't have to travel all the way to the hospital every other day
  • since i'd be dialyzing myself while I sleep, my days can be spent doing the things that I want to do, such as going to school, going to work, etc
  • since i'd be SLEEPING during dialysis, I imagine that it would cut down on dialysis fatique
  • since the dialysis time would be all night, i can run the machine at a slower pace, which is much better for one's quality of life
  • running the dialysis machine more frequently and at a slower pace is better for one's heart

So now that I've laid out all of the pros, what's the problem? What could possibly be bad about home hemodialysis?

CONS:

  • learning how to work a dialysis machine! >:-(
  • training requires someone else in my household to learn how to utlize the machine
  • plumbers (or somebody hired by the city I guess) has to come in and modify our pipes in order to accomodate the water needed by the dialysis machine
  • the need to be attached to a machine all night....what if I have to go pee?
  • committment is key. there's no coming home too late/tired to hook myself up
  • waking up late is also a big no-no. waking up late can mean being late for wherever it is that i have to go that morning
  • just the thought of having a dialysis machine in my room isn't the most desirable thought.

Ideally, with the point I'm at in my life, next to transplant, home hemo has to be the best thing for me right now. It'll allow me to work the hours that I want to work (haven't been able to do that) and it'll also allow me to go to school on a more regular basis. (haven't been doing school on a regular basis either). Let's face it. I still suffer from chronic anemia, so doing home hemo isn't going to turn me into some sort of superwoman. But it certainly will be an improvement I think.

I'm still gonna take some time to think about it though. It's a big decision.

Sunday, December 23, 2007

Colostomy Surgery - The Middle

I woke up in the ICU. Now don't get me wrong, being in the hospital sucks, and I don't wish the ICU upon anyone, but being in the ICU is where it's at. My own personal nurse at my side 24-7. Pain meds were only a few words away.

I wasn't allowed to have fluids or food orally. I wasn't hungry...not in the least. But boy was I ever thirsty. My personal nurse was allowed to tease me with a couple of tiny ice cubes and the occasional moist sponge mouth swab, but other than that, not much.

It wasn't until I left the ICU that I really realized the depth of what had happened. It was the first time I saw my stomach. I didn't see much as there was a large bandage that led from the top of my stomach all the way down to below my belly button. When I touched it, I could feel the staples that were holding my stomach together. But that isn't what startled me the most. What startled me the most was the bag attached to the left side of my stomach and the fleshy round bump that I could see through the tranparent bag. That fleshy bump which was about 5 centimeters in diameter was a stoma.

Because of the damage done to my bowel, the surgeon had to cut the damaged portion of my bowel out completely. The top half of my bowel was surgically stitched to the side of my stomach...hence the reason for the bag. For the next 6 months...this bag would be my method of...well.....doing a number 2.

I was mortified. I was especially mortified to think that this could be a permanent thing. I mean, do I not have enough on my plate as it is?

A nurse who specialized in teaching people how to take care of their stomas and colostomies came in. She taught me, my father, and my sister how to change the bag. It was so sensitive. The stoma was very fleshy and sensitive, and if it rubbed the wrong way it would bleed. Not profusely, but it would bleed. And it hurt. And you can't just 'put a bandaid on it'. There was a round sticker thing that I had to put on my stomach around the stoma. The sticker had clasps to which the bag would attach. Imagine a fleshy, sensitive part of your body having to be subjected to a sticky, abrasive adhesive that had to removed every few days. Since my skin is already sensitive, that stupid adhesive was very harsh on my skin and I had many cuts and sores underneath that damned sticker.

As if that wasn't bad enough, when it was time to remove my staples, the nurses didn't wait long enough for the incision to heal. As soon as the last painful staple was removed, my wound just popped right back open. It didn't hurt, but I felt it, and I did gasp, especially when I saw it. I was lying there, staring at a huge hole in my stomach. It looked as if I just had a c-section. I could see the yellow coloured fat in my stomach. At this point, the doctor said that the wound couldn't just be restitched up because then there would be a gap inbetween the stitched up part and the bottom. So, everyday the nurse would come and pack the wound with gauze. That was supposed to heal the wound from the bottom up.

How much do you appreciate the simple things until their taken away? Changing the bag, in my opinion, was such a big production. It took like 15 minutes. And doing it when I wasn't at home? Forget about it! But I had no control over my bowels for the whole duration of having that bag on, so it was really difficult for me. I had to wear clothes that camouflaged my stomach so people wouldn't see the bag. I was always very self conscious about the bag falling off or something....luckly that never happened.

When I think back, it's hard to believe that I had to have that bag from September of '06 up until March of '07. It wasn't cheap, either. The bags were expensive. It cost me upwards of $80 for 10 bags. Plus I had to buy the stickers, special skin cream to act as a barrier between my skin and the stickers, special bags to dispose of the used bags.... luckily my insurance through work paid for it. But unless you have a permanent colostomy bag, the gov won't assist you in paying for it. Sucks if you don't have money/private insurance and you're stuck with a colostomy...even if it's temporary. I had to get the gov to write a special letter that I could submit to my insurance company before they would pay, stating that this cost was not covered.

I remember my surgery to remove the bag was scheduled for like March 3rd or something like that. I also remember them calling me the day before to tell me that they had to postpone my surgery until the 9th because an emergency came up. I cried. I just knew something like that would happen. At the same time, I was lucky. Other surgeries had been scheduled for that day as well, and they had been pushed to the end of April. I managed to ration my remaining colostomy bags just right so that I'd have enough until March 3rd. I had to scam some extra bags off of the hospital in order to not have to go out and buy a whole new box.

Before the actual surgery, I remember my surgeon telling me that sometimes when they actually get in there, there is sometimes something else wrong. In that case, they'd have to put the stoma on the other side of my stomach...but they really wouldn't know until they opened me up.

After the surgery, I was taken to the recovery room. Apparently my surgeon came in and had a conversation with me....I remember nothing of the sort. But basically he came in to tell me that the surgery went well. But since I don't remember that, when I actually woke up, I remember patting myself down to make sure there were no more bags! LOL luckily their weren't.

I went home about 2 days later. So done and done, right? Wrong.

The doctors didn't wait for me to actually have a bowel movement the "normal way" before sending me home. Almost 2 weeks later...I still hadn't had one.

2 weeks = INTENSE PAIN! Back to emergency I went.

When I got back to emergency, some doctor said to me that she was going to put me on stool softeners or something, and I should be ok in about 72 hours. So...basically, you guys are giving me dose after dose of morphine which ISN'T working, and you're going to send me home to be in pain for 3+ days and hopefully by then this stool softening regime should work?

Another (senior) doctor came in and vetoed that idea right away.

I stayed in the hospital for about a week. The doctors were worried that they would have to open me up again to fix things, but luckily things started to work again without surgical intervention.

I'm happy it's all done and overwith. But I still have a huge ugly disfiguring scar on my stomach. I spoke to my doctor just this past Tuesday and asked him to refer me to a plastic surgeon. He told me that a plastic surgeon just moved into the office next to him (lucky for me...?) and that he'd speak to that surgeon and get back to me in the new year. So after that is all done and over with and I get my stomach fixed, I'll write Colostomy Surgery - The End. I'll even post before, middle, and after pictures.

Colostomy Surgery - The beginning

In September of '06, I got out of bed on a Monday morning in order to get ready for work like I always did. I noticed that my stomach had been hurting me for the past week or so, but I figured it was just normal stomach cramps either from my medications or possibly from my period.

But as I went into the washroom to brush my teeth, I was in more pain than before, so I decided to sit this one out. I called into the "sick line" at work, left a message, and went back to bed.

Food was gross to me. I didn't want to hear anything of it, especially since I knew that I'd be throwing it all back up shortly thereafter. Both Monday and Tuesday, I was in quite a bit of pain, and my only relief was when I managed to fall asleep for a few hours. The only reason I was actually able to fall asleep through such pain was due to utter exhaustion.

On Wednesday, Dad decided to take the day off from work and stay home to take care of me. I was in the worst pain ever. I couldn't sit down, I couldn't lie down, I couldn't stand up...I couldn't do anything. My dad went out in the afternoon to buy a TV because the TV in my room wasn't working. He figured that I could watch TV in my room so I'd be more comfortable. So thoughtful.

By the time he returned, I was literally writhing and moaning in pain. I threw up, and what came up was something that I never wish to see again. I was throwing up a thick, black substance...and that was strange to me since I hadn't eaten anything even CLOSE to that colour. The smell of what I was throwing up was very off as well. Off to emergency it is.

Before going to emergency, I called my rhuematologist who worked in that hospital. He called down to emergency to let them know I was coming. When I got there, he promptly came down to see me, and also told the ER to skip me ahead of the others. I only ended up waiting about 20 minutes. After discussing that situation with my rhuemy a few months later, he said that he took this action because
A: I looked REALLY sick,
B: I looked like I was in EXTREME pain (which I was)
C: I rarely complain too much about anything....and he could tell that THIS must be serious.

So I changed into my gown and was promptly whisked off to get an xray. Shortly after that, I was given a large container of fluid to drink for a CT scan. I dry heaved just looking at that cup. But I chugged down as much as I could and was then taken to get the CT scan. Luckily, even though I didn't drink the whole cup, I managed to drink enough for them to see what they needed to see.

The look on the ER doctor's face is one that I'll never forget. The first words out of his mouth are words I'll never forget: "Umm...It doesn't look good."

I don't thinl I've ever told anyone this, but my first thought was....Oh Lord, please don't let me die. And he didn't....because what I had has killed many others just as soon as it happened.

I had a blood clot in my intestine. This blood clot/blockaged caused holes in my intestine. Because there were holes in my intestine, all of my already digested food (waste) was leaking into my stomach....and I was very toxic. This explains the dark coloured vomit and the off smell. The doctor told me I would need surgery. Essentially, I had a perforated bowel.

Great. Naively, I asked "Ok, so when's the surgery going to be scheduled?" The doctor looked at me and said "we've already paged the surgeon on call. This is an emergency. You'll be having surgery tonight."

I was scared. Oddly, I was more scared for my parents than for myself. I hated the idea of seeing them suffer. After the doctor left, I picked up the phone in my room and called my sister. I also called one of my co-workers, Andre Finny.

Before I knew it, my surgeon had arrived and reiterated to me what was happening. I would need to wear a colostomy bag for at least 6 months, at most forever. The cause? They weren't sure. Probably Lupus. It was all happening so fast that I couldn't process the information. I didn't even know what that meant....nor did I even want to ask questions at that point. I wanted the surgery to be done. Now. So I could be out of pain.

I remember being wheeled away. I remember saying goodbye to my rants.







I remember waking up and wanting to immediately know where my parents were. It was probably 3 in the morning, so they had gone home. My surgeon had called them already to let them know I was ok, but I wanted to hear my dad's voice myself. I was in the ICU and was feeling good because of all the drugs I was on.

I called dad and told him I was ok. He didn't say much. I told him that I felt much better and my stomach didn't hurt anymore. He told me that was good, and he would see me tomorrow. I wondered why he was ending our conversation so quickly. I still wanted to talk! I later found out it was because he was crying....he was so impressed...and probably shocked that I felt the need to talk to him/call him myself that very night.

Wrapped up in hospital blankets like a cocoon, I fell asleep...with no idea what was underneath those blankets. No idea what I was in store for...

Friday, December 21, 2007

Is Gluten-Free the Way to Be?

Over a year ago, I went to visit a naturopathic doctor near my house to discuss my Lupus. She did some tests and stuff, and then she put me on a gluten free diet.

Now, as someone who took chef training and loves food (ESPECIALLY carbs), this was initially very difficult for me. However, similar to my father, I have the kind of attitude whereby I'm willing to try almost anything at least once if it is supposed to help my condition.

The Gluten-Free world was so foreign to me. Before speaking to my naturopathic doctor, I actually didn't have any idea what gluten free was, nor was I sure if I've even heard of it at all. When I went to different stores, I quickly became privy to the fact that gluten free was an EXPENSIVE venture. But again, what's a couple extra bucks when it's supposed to help you?

I noticed results in just a few weeks. I noticed my almost daily stomach aches had tapered off. I felt more energetic and "alive". I'll admit, I had my weak moments when a donut from Tim Hortons was ABSOLUTELY necessary, but for the most part, I was a pretty good girl.

The downside would have to be the weight loss. Ok, I know what you're thinking. Why would I be complaining about losing weight?? Well, I'm not a very big girl as it is. I'm 5'6, and I weigh about 118 pounds. Losing weight when I'm 118 pounds isn't ideal for me.

Unfortunately, after being gluten free for about 8 months, I became quite ill and was hospitalized. At that point, the gluten free thing had to pretty much go out the window, as I lose enough weight just being hospitalized as it is. I haven't restarted the gluten free thing, but perhaps I should.

For specifics on my gluten free diet, click on this link to a later post in my blog: http://flowonlupus.blogspot.com/2008/01/details-of-my-gluten-free-diet.html

What About School?

I'm 25 years old and I'm currently a York University student. Well, I don't know how accurate that statement is, as I haven't been to school in a year. I took the September semester off in anticipation of going through kidney transplant surgery. Unfortunately, that didn't happen due to the fact that my dad's BP was a bit too high. We're still waiting.

I had many setbacks and draw back when I was in high school, but I managed to graduate with all of my friends...and most importantly, without having to repeat any courses. I did pretty well. After high school, I went to Humber College and took chef training. I'm really glad that I did, as it was one of the best years of my life. I later realized that my condition would not allow me to pursue such a career for a long period of time. I managed to land a job at CIBC, which inspiried me to go back to school and take a course that would allow me to progress in that company.

I remember getting really ill right after I enrolled at York university. That was the same time that I had to start dialysis. I had already paid for all of my courses. When I was in the hospital, my father went to the school and spoke to the dean, who was very helpful and understanding. All of our money was refunded.

When I can, I take a few courses here and there, mostly online. I'm told that I should register with the university's disability offices so that if I need any additional accomodation, they'll know. I must say, as of yet, I haven't registered at York's disability office. The next time I go back to school, I will. However, I personally have had nothing but positive experiences when it comes to York University. I know I've spoken to other people with various chronic diseases who have had profs who were....well...let's just say LESS than understanding. People look at me and scoff when they see me put my accessibility parking pass on the dash of the car I'm in. I just know that they think I'm a big phoney. This is why it's so important not to judge a book by it's cover.

That being said, I do feel that it is extremely important to register with your school's disability office. If they don't have one, for example, if you're in high school, I think it's very important to make an effort to sit down with your school principal, or perhaps a guidance councellor, and let them know about your condition. It will definitely be beneficial in the long run!

Thursday, December 20, 2007

Dialysis Fatigue

I went to dialysis this morning for my treatment. I go to dialysis 3 times a week: on tuesdays, thursdays, and saturdays. Each treatment session is 4 hours long. What dialysis does is it removes the excess fluid and wastes from the body/blood that the kidney cannot do due to the fact that the kidneys have failed. I've been on dialysis since late 2004.

I might be inclined to say that my biggest complaint about dialysis is the fact that I have to go at all, but that seems to be a fact of life right now. Next to that, my biggest complaint about dialysis is the fact that it absolutely takes EVERYTHING out of me by the time it's over. I'm so incredibly exhausted after dialysis that all I want to do after it's all over is quickly eat something and take a nap.

I'm sure the fact that I suffer from chronic anemia doesn't help the situation, but it's a real pain feeling so tired after dialysis. As a 25 year old female, I'd really like to be more active in many different aspects of life, such as work, school, social activities, etc. Many of these things have to and have taken a back burner due to the fact that I simply don't have the energy to do many of these things. I know that it's important to take care of your health above all other things, but it's pretty frustrating nonetheless.

I wonder if there are other people out there on dialysis, and if they feel as fatigued as I do. How do you cope? How do you maintain a somewhat "normal" life?

Wednesday, December 19, 2007

Workplace Woes!

Holding down a job while suffering from Lupus can definitely be a trial.

I personally have been blessed with a great job with a great company that understands my needs. When I started working there, I was only a part-time employee. One of the really positive things about working for this company is the fact that they offer full benefits to part time employees. You can either choose the basic benefits package or the "fully loaded" one. I have the fully loaded benefits package. It helps me pay for medical stuff, including my meds, physiotherapy, massage therapy, etc.

I would definitely consider myself to be one of the "lucky ones". But how do people who aren't as fortunate as me where my job is concerned cope?

Lupus isn't really a disease whereby you can look at someone and think "yup, definitely, that person has lupus". This can sometimes make it hard when you're trying to explain to your employer that you simply couldn't come to work because you were "too tired", or your joints were hurting, etc.

When you apply for a job, and if you get to the interview process, do you disclose to the interviewer that you have a chronic illness? Do you save such information until AFTER you're hired?

What if you are diagnosed with Lupus AFTER you've been working at a certain place? Are you honest and tell your boss? Do you discuss your limitations and any possible accomodations you might need?

My job has accomodated me greatly. Right now, I work only a few hours a week. I have a special ergonomic chair that was given to me when I asked for it too. I'm also able to get up from my desk whenever I need to in order to take a break/breather.

I'd be interested in knowing other people's opinions/experiences with holding down a job/career while dealing with Lupus!

Take Care of your Eyes! Covered eye examinations

If you have Lupus or know someone who does, chances are you've heard of Prednisone. While prednisone generally does wonders for those with Lupus where the actual disease is concerned, it also has many terrible side effects that we love to hate.

Some of these side effects include:
  • the good ol 'moon face'
  • stretch marks from rapid weight gain/loss
  • avascular necrosis (death of bone or tissue due to lack of blood supply to a certain area of the body..I have it in my left hip and right knee)
  • eye problems (including cataracts)

if you live in Canada, I'm sure you know that eye exams are no longer covered. What a pain! The last time I got an eye exam I had to pay $80-something dollars. Luckily, I have private insurance through work and it was covered.

But what about those who DON'T have private insurance and have Lupus? It's not OUR fault that our eyes are more likely to be messed up due to the plethora of medications we have to take! So what can we do?

Well, if you have any of the following conditions, you can go directly to your optometrist or doctor to receive an INSURED OHIP eye examination:

  • diabetes mellitus
  • glaucoma
  • retinal disease
  • cataracts
  • amblyopia
  • visual field defects
  • corneal disease
  • strabismus

But what if you don't have any of that? (or don't know it...!) Well, what you can also do is go and see your family doctor. A requisition can be provided for a regular eye examination, and the requisition is good for 5 years! All of this info is available on the http://health.gov.on.ca/ website.

Those on Plaquinel aka Hydroxychloroquine should also get their eyes checked regularly. So make sure you get those peepers checked. OHIP covers an eye exam once every 12 months. Just make sure you get that requisition from your family doctor! :)

Call the ministry INFOline at 1-866-532-3161 with any other questions.

Why I Started a Blog! :)

Hooray! This is my first post!

There is much to be said about this disease called Lupus. This is why I thought I'd start a blog discussing my everyday thoughts and stuggles where Lupus is concerned!

I encourage comments, and I also encourage you to share this blog with other young people suffering from Lupus! :)
 
Blog Design by April Showers Design Studio