Wednesday, January 30, 2008

Petition to Raise Lupus Awareness

While I was on facebook, I stumbled upon a group created by a young man with Lupus. His goal is to raise Lupus awareness. His main arguement is the fact that many other diseases and disorders that don't affect as many people as Lupus does receive more funding and attention than Lupus. It's time that Lupus starts getting the attention it deserves!

Sonny, the creator of this facebook group created an online petition called "Raise Lupus Awareness" It's an important cause, and I'd like to encourage you to add your signature, too. It's free and takes less than a minute of your time.

After you add your signature, there is a part that requests a paypal donation. The way it's set up, it kind of gives on the impression that the donation is mandatory, but if you're not interested in donating at this time, simply close the window after you add your signature. The donations are to fund/assist the people who are running the petition website.

--"He who moves a mountain starts by moving little rocks"

Tuesday, January 29, 2008

A Day in the Life Of..

Truth be told, sadly, this is no where CLOSE to the most amount of pills I've had to consume in a day.

In the Morning....

....and at Night

I've already discussed Prednisone and Naproxen in other posts, but stay tuned for info/my opinion of all the others! :-)

Friday, January 25, 2008

Dialysis Blood Work

For anyone interested in blood results, or perhaps comparing their blood results/numbers to mine, well there ya go! These are my pre and post dialysis numbers. These are from Wednesday January 23. According to my nurse, something having to do with my iron is high,but that is because I had received a blood transfusion just a few days ago. That being said, don't be fooled by my hemoglobin number of 111 (or 11.1). Again, it's because I just got transfused! Before that it was in the low 70s :-(


Thursday, January 24, 2008

What's the deal with Work From Home Scams?

I can't begin to describe how irritating it is to log onto facebook, click on marketplace, and see all of the junk that has flooded an otherwise very useful application. There are so many fake accounts sprouting up every day selling $200 brand new apple iphones and $300 brand new Play Station 3's.

There's also no shortage of "Hey, Want a Free Nintendo Wii? Click here!" Then when you click, there's some elaborate process of filling out offers and referring your friends and such. After you've completed the required offers which likely require you to spend money or sign up for something else, and after you've referred the correct number of friends who probably resent you now for spamming them, you'd have been better off going to the store and just buying a Nintendo Wii yourself.

Something else I've seen an abundance of in the facebook marketplace is these data-entry/work at home gigs. First of all, these listings all have provocatively dressed women as the main picture in order to get people's attention. I've clicked on a couple of the links just to see where it would take me. What I found funny was the fact that so many of these sites had different web addresses, but as soon as you click, you're lead to 1 of maybe 5 differet web addresses. They all seem to re-route you to 1 of the same 5 or so web addresses! The fact that they try to get you to pay X amount of dollars so that you can make a ludicrous $200 a day or whatever the case me be is simply annoying. It's not even a guarantee for a're paying for a list. I love the fact that they put a clever code on their websites saying something along the lines of "We're offering you a 50% discount, but that discount only lasts until midnight, 3 days after January 21th" Then you look at your calendar and *gasp!* it's January 24! I better sign up fast!! Argh!

Whenever I see one of those work at home things I always type the name of the page in my google search engine bar and immediately type the word scam right after it. As soon as I hit the letter "s" to type the word scam, it appears automatically. That tells me that several other people are trying to investigate these websites too. I find that people often question the legitimacy of these work at home pages either on yahoo questions, or on the appropriately named webpage

I'm lucky. I have a great job that is very accomodating. They understand that sometimes I'll call in sick to work because I feel ill. It's a great job, I can sit at my desk and not have to move around too much, and I also have great benefits. What more can I ask for?

But not everyone is that lucky. This got me wondering. Are there actually any legit work from home jobs out there? I know that there are a lot of people who would like to work from home for various reasons, be it due to illness, fatigue, needing to be home to watch over children/loved ones, etc. I thought to myself that there must be legit companies out there that need or want people who work from home.

I found a couple of pages, and I'll be sure to post more as they come up. Most of the pages that I found were more geared towards people living in the United States. While I live in Canada, I know that a lot of people who read my blog are from the United States, so this might help out. If you're from Canada, check out some of the links anyways. Who knows what you'll find? My main criterion for posting a job was NO FEE! I haven't had any personal experience with any of the sites listed, but perhaps if you find anything worthwhile on these sites, you can let me know? :)

People often come up with fake blogs with referral links where they get credit if you click in their link. I want to assure you that this isn't the case for the links below. In no way do I benefit from you clicking those links. I'm just hoping to find some links for legit websites that have work from home oppourtunities.

1) Genuine Jobs:
2) Workaholics 4 Hire:
3) Work at Home Jobs: (select a category to find a job in that field)

Wednesday, January 23, 2008

The Life of a 20-Something With Lupus - One Month Later

It's been just over a month since I started this blog, and the response that I've been getting from it is simply overwhelming. It makes me really happy to know that people from all around the globe read my blog and are able to take something away from it.

One person told me that they've learned more from reading my blog than they've learned in a year of being diagnosed. Others have told me that I'm an inspiration, and others have even been inspired to start their own blogs. It's so great to know that it's only been a month since I started writing this blog and it has already touched so many people.

When I started this blog, I started it solely for myself. I really didn't even think anyone else would read it. Once I came to realize that other people were actually reading it, I became more and more motivated to write about my experiences, my thoughts, my advice, etc.

Something I look forward to doing is speaking at a Lupus Ontario support group. I was floored when I was asked. But I have over a month to think of what I'm going to say, and I'll definitely write about it when the day comes.

So I want to thank everyone who has taken the time to read my blog. I've met a lot of great people online and learned a lot. One of the things that I really value is the support, advice, and comfort that I get from the people that read my blog. Keep the comments coming! I'll always do my best to personally respond to each and every one of them!

Tuesday, January 22, 2008

Researchers Make Key Lupus Gene Findings

Check out the link below for a news story on CTV news. Researchers have made a number of important new discoveries where Lupus is concerned.
Once you click on the news story, look for the picture of Dr. Fortin on the page. If you look to the right of Dr. Fortin's picture, you'll see a video link. Click there to see the actual news story.

I know that after you watch the video, you'll be wondering "who is that delightful doctor with the french accent?"

Well, let me answer that for you. His name is Dr. Fortin, and he's MY rheumatologist!


Sunday, January 20, 2008

Ever have one of those days...

...when you go from 10 to nothing in a matter of minutes? I'm having one of those days today.

Last week, I started taking an online Math Course. It's a high school course called Data Management (back when I was in high school, it was called Finite Math).

Now I'll admit it. I'm a pretty good student for the most part, but math has never really been my forte. I cracked open my textbook and got through the first 3 exercises quite nicely. came something called Linear Regression.

What the heck is that? Then there was all this talk of coefficient off correlation, coefficient of determination, etc. Did I skip a chapter? I looked through all of the pages and couldn't find anything pertaining to those things. The book also stated needing a TI-83 calculator. I eventually found out by looking at the course website that this was a graphing calculator. But...I just bought a calculator 2 weeks ago. It's a casio fx-991ms. I can't graph with this!

Oh ok. The course website shows a link to where I should be able to find a graphing calculator, so I went there. I saw the calculator, but the book tells you all of these buttons that you have to press in order to get the answer...and none of these buttons are there! What the hell am I supposed to do?

Then, in came the tears.

It's not like I can't email my prof to get some help. It's not like I can't ask my sister for help. But with my disease, I almost feel like everyone has to do everything for me and I'm so not independant. I wanted to do it myself...I wanted to figure it out I used to be able to do.

"if I just took this stupid course when I was still in high school, without dialysis and with real teachers who were willing to help, I wouldn't be in this mess" I thought to myself.

"Other people get this without other people's help...why can't I?" I thought to myself.

I know that sometimes I'm way too hard on myself. The thing is that I've always been used to be on top of of the class, top of my game, etc. When one thing happens that I don't seem to know or be able to control...It makes me so frustrated.

I decided to go downstairs and take a break. My mom said that she'd make me something for dinner, but when I got downstairs, she had dosed off on the couch and hadn't made me anything.

Even more tears.

Really, it didn't make sense to cry over that since I'm perfectly capable of making a meal for myself, especially since my Mom has been at work today for almost 10 hours.

I dried my tears and turned to my blog. I know that there are people out there like me who get frustrated. It's normal to get frustrated...but it's so not necessary to beat yourself up. If it were so easy to just learn everything on your own, there wouldn't be teachers. If life didn't have obstacles, what in this life could we experience to make us stronger? If things didn't go wrong sometimes, we wouldn't have character.

It's ok to be wrong sometimes. It's ok to be sad. It's ok to be frustrated. It's also important to get it out of your system and pick yourself up.

I feel a lot better after typing this

Saturday, January 19, 2008

Lupus? Sorry....Never Heard of it.

In the left margin of my blog, I added some funny pictures of myself "thinking" of ways to increase Lupus awareness. While the pictures might be comical (well, I hope you thought they were comical...!), increasing Lupus awareness is no laughing matter.

For the most part, when I mention the fact that I have Lupus to others, they politely nod, show some sympathy, and apologize that I have to go through difficult times. It's extremely obvious that 9 times out of 10, they have absolutely NO idea what Lupus is. When I started noticing this, I started adding a brief explanation of what Lupus is when I tell people that I have it.

While I don't expect everyone to know every disease there is out there, let's discuss some Lupus facts.

  • Lupus affects 1 in approximately every 2000 North Americans and over 2 million people around the world
  • SLE (Systemic Lupus Erythematosus 8-10 times more common in females than males
  • It is estimated that Lupus affects approximately 50 000 Canadians, yet most people won't have heard of it unless a family member of a close friend has it
  • Lupus can affect anybody, however it is more commonly seen in females who have reached child bearing age and is more commonly seen in African Americans, Asians, Native Americans, and Latinos

While these statistics are quite eye opening, the statistic that gets me the most is this:

Lupus affects more people than AIDS, cerebal palsy, sickle cell anemia and muliple sclerosis COMBINED!!!

That being the case, why is it that you'd be hard pressed to find someone who hasn't heard of Aids, cerebral palsy, sickle cell anemia, or multiple sclerosis? Why doesn't anyone know what Lupus is?

My sister has MS. I can't count the number of times I've gone outside to grab the mail and there has been a package for her from the MS Society. I don't know exactly what is in those packages as I've never asked, but one thing I do know for sure is that one of the things in there is a gorgeously soft and warm fleece blanket. She has 2, one dark blue one and one red one.

Now, It's not the fleece blanket per se, but it does hurt my feelings a bit that there aren't wonderful packages coming in the mail for me from Lupus organizations. Now I don't blame Lupus organizations. Not in the least. To me, it's simply the fact that there simply isn't enough awareness. When I was younger and still under the care of sick children's hospital, it didn't matter what disease or ailment you had. You still received things to make you happy and lift your spirits. As soon as I "graduated" to a "big girl hospital", that support disappeared. I know that children need support and other things to take their minds off of their ailments. do I! I'd love to have an event whereby a bunch of 20,30,40-somethings with Lupus were able to go somewhere and get some spa treatment, or a makeover, or something like that. Perhaps even dinner or a show.

I think the main and probably number 1 priority of people with Lupus is to find a cure. But wouldn't it be nice to have some sort of free event, outing, etc that's just for us? It's almost as if we shouldn't want or desire fun stuff anymore because we're no longer children or teenagers. I think we deserve something nice and fun too, don't you?

Thursday, January 17, 2008

Ouch, My Knee!

It was a scary day for me when I rolled out of bed one day in 2005 like I usually do...and realized that I was finding it a lot harder to walk than usual. I know that I've had days where I've been limping slightly, but I could still walk. But this time...this time was different.

In order to walk, I literally had to drag my left leg behind me. I called my rheumatologist and asked him if he could refer me to the arthritis society. I thought that this was my body reacting to Lupus.

When the lady from the arthritis lady knocked on my door, I was home alone. I was sitting on the couch in my living room, which is about 12 or so steps away from the door. I braced myself, got off of the couch, and slowly limped my way to the door. On the other side of the door was a smiling and cheerful lady, who came in and helped me back to my couch.

I was happy to see her. I knew that she was going to help me with some exercises that would help my knee. She asked me several questions about my health that I was more than happy to answer. I knew that she'd be able to come up with a custom fit exercise/physio plan for me.

I was a bit shocked and disappointed when she pulled out a few sheets of paper from her bag that showed pictures of an illustrated man doing some leg exercises.

"Do these once or twice a day". She told me.

This is exactly what I DIDN'T want. I've been to many a physiotherapy office in my life, and haven't been too impressed with the majority of them. When it comes to the physio offices that I've visted and had to pay for, much of what they wanted me to do was stuff that I could do by myself with the help of internet research in my own home. I wasn't paying hundreds of dollars a week to go to some office to be told to do what's on this paper and go home. I wasn't impressed with that in the least. I wanted someone who was physically going to help me and guide me through things, not someone who was going to tell me what to do and then leave!

Eventually, I couldn't walk. At all. My left knee was very swollen and very warm too. I went to see my rheumatologist. He tapped my knee with a big scary needle. He removed about 40ml of fluid from my knee. It was a pinkish/cloudy colour. He sent it off to be tested. Immediately after that, I was able to walk. While I was still limping, I was happy to be able to walk.

The next day, my knee blew up again and I couldn't walk anymore. I went to dialysis that day and decided to tell the doctor.

"Why didn't you go to emergency?? Why didn't you tell me before??" he explaimed, not angrily, but more in a concerned tone. He ordered me to go to emergency right after dialysis.

So, after dialysis, I was shifted to a stretcher and was taken to emergency. I was wrapped up in several warm blankets and yet I shook and shivered. My father came to see me before his shift was over, but then left so he could go to the station, change, and come back. The emergency department was so full that I was lying on a stretcher that was in a hallway...beside an automatic door that led outside in the middle of winter. Everytime anyone came into the building or left the building, a gust of cold air swept over me. Eventually, a paramedic came in and saw me shivering. He moved me away from the door and wrapped me in another warm blanket.

Eventually it was my turn. An IV was put into my hand as I continued to wait in a room. I was wrapped in a cocoon of blankets as sweat dripped down my face. I was still cold. Intense throbbing pain swept though every one of my joints. Remember on the Flintstones when Fred would hit his finger or toe, and it would turn red and it would throb? That's how it felt. I felt it in every part of my body. First my ears, then my neck, my shoulders, elbows, every single finger, my hip, my knees, my ankles, my toes....everywhere. The pain swept through my body one joint at a time, from head to toe. A nurse came in and pushed morphine directly into the IV that was now in my arm. A feeling of comfort, relaxation, and ultimately pain relief came over me.

After much testing, I found out that I had an infection in my knee, which probably got there from the dialysis line I had in my chest. I know exactly how I got the infection too. I had recently got a line put into my chest for dialysis. These lines are extremely itchy. When I was at dialysis, a nurse was about to change the dressing on my line. Before cleaning it, she asked me if it was itchy and I told her it was. She told me to go ahead and scratch away before she cleaned it, which I did. What I didn't consider was how dirty my hands probably were, and also the fact that there was no way that a simple once over swab of the area couldn't possibly rid me of all the bacteria I just put there. But I wasn't thinking. I don't think that nurse was thinking either.

I was put on a course of antibiotics, but would also need surgery on my knee. It took a few days to get booked for the surgery. Until then, doctors came to my room every single day to stick a huge needle in my knee to draw out the collecting fluid. It was irritating, because there was this student doctor who couldn't seem to do it. He would always come in by himself and try, only subjecting me to undue pain. Eventually he'd always have to call the senior doctor to come in and show him how to position the needle properly. It was awful.

Eventually, on a Wednesday evening at 6pm, a group of paramedics came into my room and told me that they were going to transport me to another hospital for my surgery, and then they were going to bring me back here.

The paramedics lifted me gently off of my hospital bed and onto their stretcher. I was taken downstairs and put into the back of an ambulance. When I got to the other hospital, I was put in a 4 bed room for a few hours until I was ready for surgery.

The surgery involved 3 small incisions where instruments and a camera were inserted. The infection was washed out of my knee, and tubes with a pump at the end were inserted into the incision holes to drain out any additional fluid. My knee was wrappped up.

I woke up in the recovery room. I was then transported back into the 4 bed hospital room. I stayed there for a short while, when 2 different paramedics came back to take me back to my original hospital room.

A few days later, the doctor came in and simply pulled the tubes out of my knee. It didn't hurt, but it did feel funny. I was told to start walking around. I was scared to do so, simply because of all the pain I had experienced before the surgery, and also due to the fact that I was afraid that the surgery I just had would make my knee hurt as well.

I was more than relived when I finally stood on my own two feet. I knew that I should still take it easy, but I felt like I could run a marathon. I was glad. I was more than glad.

So now, the only physical memory I have of this event are 3 scars on my left knee from the incisions. I was very lucky that the infection didn't damage the cartilage in my knee, because that was a major concern for the orthopedic surgeons. Luckily when they got me into the emergency room, that wasn't the case.

Hmm...considering the outcome of many of my life's episodes, I'm a pretty lucky girl.

Wednesday, January 16, 2008

First Day of Home Hemodialysis Training / SOS4000 - Step by Step

I didn't sleep very well last night.

I tossed and turned in my bed for half the night. All I could think of what the day that was ahead of me. It would be my first day of home hemodialysis training.

I had no idea what to expect. I didn't know if I was going to be thrown in there right away and be expected to start learning how to set the machines up, etc., or if today was simply going to be a day of observing. And as per the nurse I spoke to before agreeing to do home hemo, I was expecting a LONG day, as she told me that home hemo training was from 7:30am-3:30pm.

Much to my delight, when I got to the home hemo training unit, I found out that training wasn't going to be an all day affair. Yes, the unit is open from 7:30-3:30pm, but it doesn't mean you STAY there for that long! *phew*.

Today wouldn't have been a good day to train me on the machine anyways. As per my monthly blood results, my hemogl0bin had dropped to 70 g/l. Since it had gotten so low, while I was on dialysis I received 2 units of blood. I can't wait for the effects of the blood to kick in. *sigh*, oh how I love the feeling of "not tired"!

My nurse's name is Rose. She's very sweet. In the past she had approached me about wanting to do home hemo but I always refused. I was positive that I was getting a kidney soon. Aside from that, I had no interest in seeing a big ugly dialysis machine in my room. Now that transplant talks are on hold, I can't imagine NOT taking this step. It's very necessary if I ever hope to finish school.

Rose was very lovely. She set the machine up slowly as I observed. One of the things I like best about Rose is her ability to explain things to me in a way that I understand without ever being condescending about it. She introduced me to 2 different types of needles. There were the needles that I'm used to, which are the ones we used today. There were also needles called button hole needles. They're not "sharp" like a needle usually is, but it's in fact kind of dull. You select a spot on your arm where you will put the needle and you pretty much stick with that spot. Kind of makes things easier. The needle I was most interested was a needle that was similar to an IV needle in that you insert it with the needle, then you remove the needle while a plastic tube remains in your arm. When I was shown the choices, I couldn't imagine any of the needles aside from the IV-style needle being logical. If I'm going to go to sleep, I'd MUCH prefer to have thin plastic in my arm and not sharp needles....but that's just me. Then again, surprise surprise...the IV-style needle seems to be the most complex!

I learned how to silence a beeping machine. My machine beeped a lot because there was air detected in my lines, and the machine doesn't like air. The only reason why it was doing that was because I was receiving a blood transfusion.

Perhaps some doctor already told me this and I wasn't listening, but aside from dialysis stuff, I learned a few things about myself today. Rose told me that while she was reviewing some notes that a transplant nephrologist wrote in my chart, she noticed that one of my blood results showed that I have a thalassemia trait. Thalassemia is the name given to a group of genetic blood disorders. In thalassemia trait (or minor) specifically, there is a lack of beta protein in the hemoglobin. Usually, it's not great enough to cause problems in the normal functioning of a person's hemoglobin.


Anyhow, I wonder if a combination of thalassemia trait as well as sickle cell trait are the reason for my never stable hemoglobin?

After dialysis, my father came to pick me up. He was participating in a walk organized by SOS4000 in order to bring awareness to organ donation/signing your donor cards. The 4000 represents the number of Canadians that need an organ transplant. Pretty crazy. Sign those donor cards! I also got the chance to speak with Mayor Miller. Mayor Miller really likes my Pops because he's so involved with tons of stuff in the Dad is a popular guy!

If you "facebook", check out the SOS4000 facebook group. George Marcello is the head of the group as well as the CEO of Step by Step. If you click on the group and click on the pictures, you'll see a picture of me laughing at I speak to the Lieutenant Governor David Onley and his wife! :)

Monday, January 14, 2008

Irregular Periods & Lupus

I don't think it's any surprise that people with active Lupus symptoms often experience irregularities in their periods. I've heard of some people who's periods become super heavy and some people's periods become extremely light and often disappear altogether. With my experience, the latter seems to be what I've heard more often.

I'm not experiencing any active Lupus symptoms and I haven't for over 2 years. I can't remember when exactly this started, probably in 2004 or so, but since then, I've never had a regular period. I'm not sure why my body refuses to have a regular period even though I don't have active Lupus. What I do know is that it is quite possible that dialysis has caused my body to stop having periods.

The body is an amazing thing. Our body knows when our body is going through stress and it just shuts down things in our body that aren't essential. In this example, periods!

I went to see my wonderfully wonderful gynecologist and she put me on "the pill". After much consideration, she finally put me on Alesse.

I took Alesse and was pleased to get my period back.

WHAT?? Why would ANYONE want their period??

Well, I'll tell you.

My first reaction to that question is duh, what woman really enjoys "that time of the month"? But let's face it: a woman having her period is a natural thing of life, and we're supposed to have it. Among other things, not having you period for super long amounts of time isn't good for your bones.

Now Alesse is a birth control pill that has 2 hormones in it: progesterone and estrogen. There are many warnings tied to birth control pills with estrogen, including:

  • risk of blood clots
  • stroke
  • heart attack (especially if you smoke & are 35 years of age or older)

Now my major complaint about taking alesse is the blood clot factor, especially since I developed a blood clot in my stomach a year and a bit back. My blood tests don't indicate that I'm at risk for developing blood clots according to my doctor, but at any rate, it still happened.

My doctor suggested that I go back to my gynecologist and request a progesterone only birth control pill, aka 'mini-pills'. Some of the benefits of progesterone only pills versus progesterone AND estrogen birth control pills are:

  • they can be used by breast-feeding mothers
  • they can be stopped at an time
  • they don't interfere with sexual "spontaneity" (ooo-lala!)
  • they're good for people who cannot take estrogen because they smoke & are 35 years of age or older, have had poorly controlled diabetes for a long time, have heart disease, blood clot problems, or high blood pressure
  • have migraines that get worse when taking estrogen
  • have heavy and painful menstrual periods (progesterone minimizes heavy bleeding and cramping)
  • (i love this one) have anemia from heavy menstrual bleeding

So, I'm going to make an appointment with my gynecologist and see what her opinion is and see if she thinks that progesterone only birth control pills are for me.

Sunday, January 13, 2008

Questioning the Reason for my Perforated Bowel

I wrote an entry a few days ago about what I went through when I had to be rushed to emergency and was told that I had a perforated bowel. If you are new to my blog, you may Click here for that entry.

This morning I woke up and decided that I would do some research on a couple of the medications I'm taking, namely naproxen.

As mentioned in previous posts, I have avascular necrosis. The fact that I have avascular necrosis makes it difficult for me to walk sometimes. When I explained this to my doctor, he prescribed naproxen. Naproxen is an anti inflammatory drug. It basically reduces the hormones in your body that cause inflammation that cause pain in your body.

I must admit, after taking this drug, the pain in my knee and especially in my hip, where the pain is more severe, decreased significantly. I was able to walk around with a lot less pain, and that was a huge deal (and relief) for me.

Months later when I ended up with a perforated bowel, doctors looked at me and scratched their heads. They were baffled and didn't know or understand why this happened. When you have a disease like Lupus...the popular thing to do/say is " was probably your Lupus that caused this to happen."

Well, I googled Naproxen, and whatever did I find?

This medicine can also increase your risk of serious effects on the stomach or intestines, including bleeding or perforation (forming of a hole). These conditions can be fatal and gastrointestinal effects can occur without warning at any time while you are taking naproxen. Older adults may have an even greater risk of these serious gastrointestinal side effects.
Call your doctor at once if you have symptoms of bleeding in your stomach or intestines. This includes black, bloody, or tarry stools, or coughing up blood or vomit that looks like coffee grounds.

I found this info on, and the specific link to Naproxen can be found here.

I'm pretty saddened, irritated, and angry at this. No one seemed to know that this medication could (and probably was) the reason I developed a hole in my intestine. Everyone had their own reasoning and explanation as to why this happened.
At the same time, this whole medication thing is such a trial and error thing. Whenever you see these crazy, life threatening side effects for medications, you almost think "Ahh, well that crazy side effect could never happen to me". I wonder, if I had been made aware of these side effects before being given the medication, would I have decided against taking it?
Umm..yeah...I think I might have. Taking a medication that makes it a bit easier to walk is not the same as taking prednisone, or MMF, or any other medication which is basically used to keep your disease at bay. Stopping naproxen or deciding to go without it wouldn't have threatened my health or my life...
....taking it did, though. So many people flat out die from having a perforated bowel. I'm damned lucky to be alive.

Saturday, January 12, 2008

I Love Eating Ice....and No, I'm Not Pregnant!

I've always loved eating ice. If someone gave me an entire bucket of ice chips, I'd eat them. I also love drinking slurpees from 7-eleven, but drinking slurpees doesn't give me the same satisfaction as munching on some ice does.

The other day I was talking to a friend of mine on MSN. I mentioned to him that I was eating ice, and he told me that eating ice was a sign of sexual frustration! Until then, I didn't even think about why I enjoyed eating ice so I looked it up.

Until I looked it up, I have never heard of Pica. Pica is defined as an appetite for substances not for food, such as clay or paper products. Pagophagia is pica specifically for ice. Upon reading further, I found that studies show that pagophagia is a specific indicator for iron deficiency anemia. Isn't that something?

I continued to read. A study was done with 55 patients who had iron-deficiency anemia. Out of those 55 patients, 32 of them had pica (58%). Out of those 32 patients, 28 of them has pagophagia (88%). I found all of this info on a medical weblog written by Kevin M.D. The specific site that I found this info is:

Isn't that odd? I wonder what it is about anemia and eating ice?

I bet you're wondering why pregnant women often eat ice too, right? Well I found an answer for that as well. When pregnant women are in their third trimester, their iron is at its most depleted. So, iron at its most depleted = iron deficiency = eating ice.

On a bit of a side note, I think it's quite hilarious when I tell people I have chronic anemia. When I tell them this, I also explain that my doctors can't seem to figure out why my anemia is so stubborn and treatment resistent. They then turn around and say things to me like:
"Well, if you just ate more spinach your iron would go up."
"Why don't you take some iron pills?"
"Eat more red meat!" and so on and so on.

Let's get one thing straight. I don't LIKE being anemic. If I could eat a leaf of romaine lettuce and get all better I'd do it! And people who tell me to take some iron pills, sheesh! I just said "TREATMENT RESISTENT!" Hahaha ok, I'm done.

So if you're an ice eating fiend like me and you're also anemic, now you know why! And conversely, if you're an ice eating fiend and you don't know why, perhaps it's time to see your doctor and check for anemia.

Just thought I'd share this interesting little tidbit.

Friday, January 11, 2008

Low Hemoglobin, Anemia, and Lupus

As with many other people with Lupus, my hemoglobin has always been a problem. Lupus with chronic kidney failure doesn't help either. While anemia has always been present in my earlier Lupus days, it has never been as stubborn as it has been for the past few years. In the past, I was able to inject myself in arm with EPO and I was able to keep my hemoglobin under control. After being on Epo for a while, my doctor switched me to Eprex, which is similar, but apparently it's supposed to be better. That worked well for me too. Now my body seems to be really resistant to these conventional treatments.

My blood levels are good and I seem to have a lot of iron IN my blood, but my body doesn't seem to be ultilizing it properly. I've had many tests to try and figure out why my hemoglobin keeps dropping and dropping. One hematologist even told me that I had "iron overload" in my blood. So yes, there's lots of iron in my blood but why doesn't my body seem to be using it properly? The only thing that seems to bring it up for a while is getting a blood transfusion.

I've had all of the normal questions, such as doctors asking me if I'm bleeding from anywhere, etc, and I'm not.

I've noticed that hemoglobin levels are expressed differently numerically in Canada than they are in the United states.
In Canada, normal hemoglobin levels or counts are:
140 g/L to 180 g/L for men
120 g/L to 160 g/L for women

In the United States, normal hemoglobin levels or counts are:
13.5 g/dl to 16.5 g/dl for men
12.1 g/dl to 15.1 g/dl for women

In Canada, we measure hemoglobin in grams per Litre, whereas in the United States, it's measured in grams per decilitre. 1 litre = 10 decilitres, so I guess in order to figure it out using Canada's method of measurement, you'd take your hemoglobin (let's say its 10 g/dl) and you move the decimal point over once to the right (therefore giving you 100 g/L), and vice versa if you're trying to change the American method of measurement to Canada's method of measurement.

Even based on that conversion, acceptable or "normal" levels of hemoglobin in Canada and the United States are different. Normal for a woman in the U.S. is 12.1 g/dl to 15.1 g/dl (or 121 g/L to 151 g/L in Canada), whereas in Canada, 12.0 g/dl to 165 g/dl (120 g/L to 165 g/L) is considered acceptable. It's not THAT much of a difference I guess, but it is different.

My hemoglobin as of yesterday is 75 g/L, or 7.5 g/dl. Pretty low when you look at what's supposed to be normal. The lowest I've ever been that I can remember is 55 g/L (5.5 g/dl). Less than half of what is supposed to be acceptable!

Sometimes my doctors ask me how I keep from passing out and stuff. The only answer I can give is the fact that I've gotten "used to being tired all the time". If I acted how I felt 24/7, then I'd probably be in bed ALL day long. I'll admit, I do relax when I really feel like I need it, but at the same time, like I've said time and time again, I cannot and will not let Lupus control my entire life!

It is, however, getting to a point where I'm really tired all the time almost. I'm guessing another blood transfusion will be in the books for me in the next month or so.

Thursday, January 10, 2008

The Details of my Gluten Free Diet

In a previous post, I had discussed whether or not gluten-free was the way to be. The link to that entry was

While I briefly touched on the subject, I didn't actually discuss what my diet consisted of.

Dairy = gonzo. It's amazing how much you miss something only when you're told that you can't or shouldn't have it. I do like ice cream, and I like drinking milk. For a while, I did stop drinking milk and using dairy on a regular basis for I felt that I was lactose intolerant. I don't think I was/am now. I think it was the fact that I had a perforated bowel for God knows how long...and the dairy, along with almost any other food, irratated my stomach.

My substitute for milk was soy milk or goat's milk (my naturopathic doctor said goat's milk was acceptable). I also ate soy cheeses. Sometimes for breakfast I like having a fried egg with a slick of melted cheese on the top. My main complaint with the soy cheese that I bought was the fact that it didn't melt the way regular cheese did. But the taste was decent.

Beef was allowed on this diet thankfully. So was chicken, but I was told to minimize the amount of chicken I ate. The only meat that I was to stay away from was Pork. I didn't think that I ate pork that often until I woke up one day and wanted to eat some sausages. Guess not! Now they DO have beef breakfast sausages, but unfortunately I had to stay away from those too! Why? Well, sausages contain breadcrumbs in them. Breadcrumbs = GLUTEN! :-(

I really love seafood, but I don't eat it that often simply due to the fact that it isn't always readily available in my house the same way chicken or beef would be. It really hurt my heart when I was told to stay away from shellfish. No shrimp, no crab, no lobster. I was soo sad. I was allowed to eat fish like salmon and halibut and stuff. But like I said, you never know how much you really like or want something until you're told to either minimize it or stop it completely. That's how I felt when I was first put on dialysis back in 1996 and I was told to minimize that amount of fluid I drink. Me, the girl who drank 2 litres of slurpee almost daily just the summer before. Even though I was VERY active, that was GROSSLY unhealthy for me anyways...but the point is, it's clearly human nature to want what you're told to stay away from. Oh yea, speaking of slurpess... I wasn't allowed to drink pop. *cries*.

This was super difficult for me. I LOVE my carbs. So to be told that I cannot have pasta, cake, cookies, bread, etc, was so hard. There are so many hidden sources of gluten and you really have to keep your eyes open and do your research. I went to McDonalds once with my mother and decided that I was just going to have a small fries. (Potatoes are allowed on this gluten free diet). When I got my fries I also decided to grab one of those nutritional charts that they have at McDonalds. Can you believe there's gluten in the fries? Basically what that tells me is that the fries contain more than just potatoes? What else is in there? Well, i'm sure we all suspected that McDonalds fries had SOMETHING in there, which would be the reason why they're so gosh darned good!

Another thing I had to be watchful of was cereal. Rice is also allowed on this diet, so I used to eat rice krispies and nothing else. Perhaps I'm just going crazy, but I'm sure that I looked at a box of Corn Flakes in my house soon after going on the diet and noticed that there was gluten in it. Then when I saw a box of the same cereal in the grocery store, there was no gluten to be found on the box. I was happy to hear that, because I love me some Corn Flakes.

It wasn't until I went gluten free that I realized that there were several gluten free options out there. In my grocery store travels, I found many great things such as gluten free pasta, dairy free ice cream, gluten free cookies, gluten free cereals, etc. It was great, and I was very pleased. My only complaint about gluten free foods is the fact that it was more expensive than everything else. In the summer of 2006, I went to England to visit my aunt. There was a lot of gluten free food in the grocery stores there too, and they weren't anymore expensive than anything else in my eyes.

Now there was a lot of other things that went into my diet. My naturopathic doctor also told me to drink something called ultra-clear GI for about 2 months or so. It's a powder and it comes in a container that looks like those containers that creatine comes in. This was to clean my colon. As stated on the webpage , the reasons to clean your colon include:

Re-establish healthy pH balance of gut which supports appropriate lactose producing bacteria that allows to reduce cholesterol, reduce inflammation, and increase aliveness.
To improve nutrient absorption and increase energy.
To remove unwanted parasites from the gut.
To detox the whole body. You can’t get rid of waste if the sewer system is jammed.
Remove build-up of mucus that are very sticky and adhere to the wall and allow a perfect place for candida and parasites to hide in.
Body purification leads to inner purification, increase lightness of being, increase elevated mood.
The colon is the assimilation and seat of the emotional body according to Chinese Medicine. Cleanse the colon to cleanse your attachments to emotional drama trauma.
To restore appropriate G.I. flora for healthy living. (80% of Americans have B Coli with increase pathology and degenerative diseases.) Eighty percent of Primitives gastrointestinal tracts have healthy lactose producing bacteria.
Most raw foods, especially greens, feed friendly bacteria. Cooked and processed foods feed harmful bacteria.

Like I mentioned in my previous Gluten Free post, I really did feel better on the diet, but had to stop it when I perforated my bowel. I couldn't be on the diet then because I would have lost too much weight. By the way, if you're looking to lose weight....go gluten free! You'll lose weight and it's good for you. that I'm reminded of ultra clear GI, perhaps I should start drinking it again to clean my colon...

Wednesday, January 9, 2008

Hey Baby, Hey Baby, HEY!

It's not every woman's dream or ambition to have a child or children. I've always known that I would like to have children of my own someday.

At a young age, I remember crying in my father's arms after being told that I'd probably never be able to have children. That was when they told me that they wanted to put me on a drug called cyclophosphamide, which is pretty much, in my opinion, similar to a chemotherapy drug.

I went on that drug only a couple of times and each time it never agreed with me. It gave me seizures when I received it intravenously. It made my bladder bleed when I took it orally. Since I was never on it for a long period of time, I'm assuming that I don't have to worry about that too much.

So, putting that aside, what about all of my other risk factors? I have Lupus AND kidney failure.

First, the kidney part. I remember a point in time where doctors said you should NEVER get pregnant while on dialysis. Well, there's a lady in my dialysis unit who has had several children while on dialysis. When I say several...i mean like 4 or 5! I have to ask her if she every miscarried since I'm not too sure about that.

When you couple that with Lupus, I know it's important that you cannot be in the middle of a "flare", and you also have to be in remission for at least 6 months before attempting pregnancy. I've heard some conflicting stories about the probability of your child getting Lupus if you have it. Some people say there's a high chance, others say there isn't. The opinion I'm going to stick with is one that I saw on which said that there is less than a 5% chance of passing Lupus down to your children.

I'm not really on a mission to go out and get pregnant right NOW, as my preference is to be happily married before having a child. If there is anyone with Lupus who has had a child or children, I invite them to comment on my journal or email me and tell me how it went! :)

Tuesday, January 8, 2008

Dialysis @ Home

When I went to the hospital today, I spoke to this lady about learning to do dialysis at home. It was kinda funny to me because I had asked to speak to her at around 7:45 and by 7:50- something she was already there. After giving me a bunch of info she rushed one of the technicians over to speak to me about coming to my house for 15 minutes or so to check out my plumbing and such to make sure my house was compatible. She also wanted me to start the training tomorrow! The whole thing was kind of annoying, and it reminded me why I didn't do this before.

I understand that doing dialysis at home is supposed to be better for me and my health (next to a transplant of course), but I really hate the way that home hemodialysis department works. I'm convinced that they work on some sort of commission basis or something because I can't imagine why else they would pressure you and harass you so much.

I don't know what to do. As I mentioned, I know it's supposed to be better for me, but at the same time I hate the idea of having a huge dialysis machine in my house. Well, it certainly won't be huge, but it also isn't the portable one that I wrote about earlier. I asked the home hemo lady about the portable machines and she said that a doctor by the name of Dr. Chan is working towards getting those machines here, but we don't have them yet.

As much as I remain strong 90% of the time, the other 10% of the time I'm just like....crap, why me? It's not like I wish what I go through upon anyone else, but like ever other normal human being, I just want to be able to wake up everyday, go to school and/or go to work, do my thing, doo what I want when I want....and I just can't. And this isn't just something that will "go away" unless someone finds a cure for Lupus in my lifetime.

I don't know how long it'll be now before I'll get a transplant, but I can't go on with this going to the hospital 3 times a week thing. The other people in that hospital unit are all older. Not to say that they don't have anything to live for but I'm supposed to bee at an age where I'm free to do freely, get my life on track, etc. I just feel like I'm stuck. Like my body wants to do stuff, but my feel are held down in a block of cement.

So I have to make a decision about home hemo. My Dad is all for it...but I'm having trouble reading my Mom. I just wish I didn't have to make this decision at all. I'm so thankful for the days when I may have had Lupus but I wasn't in complete renal failure. Now that I has it ever turned my entire life upside down.

This stinks big time.

Monday, January 7, 2008

Lupus & Multiple Sclerosis -What's the Connection? IS there a Connection?

This question has been on my mind for a good number of years.

Much like Lupus, Multiple Sclerosis is an autoimmune disease. The disease attacks the protective myelin covering of the central nervous system. This causes inflammation and it often destrys the myelin in patches (phospholipid layer that surrounds the axons of many neurons of the spine). Most of the time, people with MS suffer from MS attacks and subsequently go through times of full or partial recovery. So, like Lupus, I guess you can say that people with MS have MS "flares" followed by times of remission.

I know that there are other similarities in these two diseases, but I also wonder if any research has been done in families where one family member may have one of these diseases while another family member has another.

Why? I have 3 older siblings. My sister is the oldest while my brother is in the middle. I have Lupus, my brother doesn't have anything...but my sister has MS. She was diagnosed a few years after I was diagnosed with Lupus.

Of the people who may read my blog, if you know of any information or research that is currently being done or has already been done concerning autoimmune diseases in family members (especially if the research is on MS and Lupus), please let me know. I'd be super interested!

Sunday, January 6, 2008

Love and Lupus - Getting into Relationships - Is it Possible?

I'm no relationship expert. I've done my fair share of dating, but have been in few exclusive relationships.

When I was first diagnosed with Lupus, I used to think to myself "ok...that's it. I'm destined to be single forever".

There are so many things out there that cause stress in a relationship. Now imagine throwing a chronic illness into the is THAT going to work out? I used to think to myself that I had 2 options: I either had to "settle" for someone I wasn't 100% happy with, or I was going to be alone.

I was diagnosed at 14 years old, so I never had a real relationship prior to diagnosis. When I did date people after that, I never told them of my illness. On the night before a date, I'd pray that I'd be able to walk properly and without pain from my avascular necrosis. I made sure to take my prescribed medication on date days to keep my pain at bay.

I didn't want people to judge me based on my illness. Sometimes I felt like I was being deceitful in that I'd date people and not tell them right away what I was dealing with. There was one fellow that I had dated on and off for a little while. We met at a club. We weren't best friends, but we were friendly enough to call each other on the phone just to chat. During one of our conversations, I told him about my illness. The silence that followed was deafening. I felt like such an idiot....why did I even bother telling him? I eventually told him that I had to go because my mother was calling me. I wanted to get out of that situation ASAP and I was sure he did too.

A week had passed and I hadn't heard from him. It wasn't uncommon for me to not speak to him after a week, but this week seemed especially painful. It wasn't because I was head over heels in love with him or anything....but I honestly felt that he didn't want to have anything to do with me, be it a friendship or something more, because now he knew I had a chronic illness. What guy would want to deal with that?

3 days after that, he sent me a text message. "I'm thinking of you. Let's grab a coffee. xo". I sighed a sigh of relief. We went out for coffee and we chatted about a lot of stuff like we usually did. We also talked about my illness. He told me that I could call him if I needed someone to listen.

We lost contact for a while, but reconnected as of last year. And since he came along, I've dated other guys too. While I don't spit out the fact that I have Lupus on the first date, I'm also not afraid to discuss it with the guy I'm dating if our relationship is beginning to get serious. The point is, if everything else between myself and a guy is going well, and I tell him I have Lupus and he leaves me high and dry.....then obviously he wasn't worth my time anyways! I mean, it'll still hurt, but if someone who otherwise really digs you runs away when they hear the word Lupus, then there's no saying what else they'd run away at if I didn't have an illness.

I haven't dated much in the last few years. There are a number of reasons for this, one of them being the fact that I have Lupus. The past few years have been the most difficult for me in dealing with my illness. The last thing I wanted to do was get into a relationship and make someone feel obligated to be with me just because I'm ill, and guilty for leaving me because of my illness. It's inevidable though. As much as I try to stay away from relationships and boys in general, the more they come.

When is the right time to tell your significant other that you're dealing with an illness? It's always been a question that has crossed my mind. I'm not in a committed relationship right now, but it's still important to know. When that time comes that we're exclusive, do I say "umm....there's something you should know about me..."? That sounds like what Michael Jackson said to that poor girl in the thriller video!

Honesty is always the BEST policy, but where does that honesty begin? It's certainly not something I'm going to discuss on the first couple of dates.

So let's say I meet prince charming, we get engaged, and we set a wedding date. I've had so many fears about a wedding. What if I'm too exhausted to stand at my own wedding? What if I can't wear cute high heeled shoes because my hip/knee hurt? What if all the stress of planning a wedding causes me to have a Lupus flare one week before my wedding? I don't want to look like stay-puft marshmellow man in my wedding pictures!

What I can say is this. I've given the men i've dated and the men in my life in general way too little credit. The boys in my life have been great. I used to always think that people would shy away from me, wouldn't want to hug me, wouldn't want to kiss me...wouldn't want to get close to me in general. I can't say that my early high school days helped. I lost more than my fair share of friendships because of my newly diagnosed illness. But now that I'm older, and the people I hang around with are older, I've come to realize that people, in general, are good people. I haven't been deprived of friendships, hugs, kisses...I don't feel deprived at all.

Love and me, when/if the right guy comes DEFINITELY isn't impossible.

Full Time Job/School + Lupus - Can it be Done?

Ah yes, the question that has plagued mankind for many centuries. The question isn't only CAN it be done, but SHOULD it be done?

I was first diagnosed with Lupus 2 months into my first year of high school. Sure, I spent a good amount of time out of school and in the hospital. I've always been a pretty good student and I usually get good marks. I must say, however, one thing I do NOT like is having the spotlight on me. When I'm in a classroom, I like to put my hand up to answer a question when I feel comfortable doing so. I don't like being singled out, nor do I like one-on-ones. Well, while I was in the hospital, there was this tutor who would always come in. She would always come in when I was at my weakest, and I'll never forget those fingers of her. She had the thickest fingers....they reminded me of sausage links.

But I digress. As soon as I was released from Sick Children's hospital, I was both happy and eager to get back to school, and I did so on a full time basis. I did school full time and also did dialysis 3 times a week...until I was lucky enough to get well and not need dialysis again for about 7 years. All through high school, I never skimped on my courses. I took all my courses and never failed one. I was (and am) the type of person who didn't like getting special consideration or "allowances" from my teachers, so I always tried to do everything that everyone else was doing without and extentions or special consideration. I remember one day I had an exam. I was so crippled with a stomach ache that I could barely stand up straight. My dad told me to stay home and he would talk to the school....but I refused. I had my dad drive me to school and I took the 2 hour exam while my dad stayed in his car outside waiting for me to finish. I finished. I also got 82% on that exam.

I didn't participate in too many extra-cirricular things as I didn't want to overdo it. But I was actively involved in my school band. I had to be....I loved music, and my high school was known for its band. I played the clarinet. I was the concert mistress for the band both when I was in the junior band and also when I was in the senior band. I did all of this throughout high school while holding a part time job for 2 years as a cashier in a fancy grocery store, and also moving on to be a telephone technical support agent for an internet company.

When I graduated from high school, I went on to college full time and took one of the most physically exhausting courses out there...especially for a person with Lupus: Chef Training.

This 1 year intensive course really tested my willpower. Standing on your feet for hours at a time while wearing a hot chef jacket and checkered pants while slaving over a hot stove and a hot oven isn't easy for anyone, nevermind someone with Lupus! But I did it. I graduated, and it was one of the best years of my life. I made some lifelong friendships...and I'm happy about that.

I worked as a cook in a restaurant for a few years. After about a year of working in the restaurant, I had a Lupus flare and had to take some time off. I remember being off for less than a week when my kitchen manager called my house to see if I was ready to come back to work yet. In the restaurant business, there is often a very high turnover rate, and even though this restaurant had only been around for a couple of years (I started working there the day it first opened), I was one of the people who had been there the longest. My kitchen manger Ian had no idea what I was going through. This was my fault partially because I didn't tell him. But when I told him I wasn't ready to come back to work, he'd leave me alone....for about 2 days!

I remember once he called me and asked me to come in to work. I totally was NOT ready to come back to work, but I could sense the desperation in his voice. I couldn't let him down, so I told him I'd come in for 4 hours ONLY. When I got there, I felt like I was moving slower than a turtle. But I managed to get all of my orders out on time. As soon as 3 hours and 59 minutes passed, I started to wash up and get ready to leave. My manager tried to guilt me into staying longer (I was usually stuck there for at LEAST 10 hours) but I refused.

I quit working there. I knew that it was way too much for my body....and I could never keep this up for the rest of my career.

After leaving there, I dabbled in going back to school and getting a job in nutrition. Around that time, I was lucky enough to score a part time job working for a major bank in their card products department. I spoke to a few of my friends, one of them who had taken nutrition, and she told me that there was a lot of competition in that field, and she had subsequently switched to accounting. I decided that I was going to go into HR. I like talking to people, it would allow me to move up in the company that I now worked for, and my company would pay for my school! Does it get much better than that?

......before I started my first day back at University, I got sick...and back on dialysis I went.

I feel like early on when I was first diagnosed, I had the energy to do ANYTHING. I look forward to slowly but surely finishing university and hopefully getting a job in HR. But let's face it: most HR jobs are full time jobs. I don't even know if I can get up every single day and go to work. Aside from that, eventually I'm going to have to leave the nest that is my parent's house and get a place of my own someday. Perhaps I'll get married someday, but until then, I have to figure out how I'm going to support myself. I don't know if I can successfully support myself and live the life that I want to live if I only work part-time. If I could find a job in HR that would allow me to work in the office and also work from home that would be absolutely perfect.

All of this being said, is it even a good idea for people with Lupus to work full time? Lupus is called the disease with 1000 faces. Even though there is an estimated 15 000 to 50 000 people in Canada who have Lupus, the thing with Lupus is the fact that no two people experience the EXACT same symptoms. That being said....everyone is different. Some people might be able to hack it without any problems. I did pretty well when I was in high school, and I managed to graduate when I was supposed to without having to take any extra courses or summer school to catch up. It all depends on the individual. I aspire to be able to work a full-time job in HR, and hopefully the bank I work for will allow me to work from home and from the office. My employer has been the most understanding employer I've ever had where my Lupus is concerned, so I dont foresee that being a problem. Of course, if I have to interview a potential candidate, I don't expect to work from home. But if it's normal other computer duties I have to perform...then why not?

Whenever I look at the job postings for the company I work for, I notice that at the bottom of the page, they state that they are an "equal opportunity employer. It is the Company's policy to recruit and select applicants for employment solely on the basis of their qualifications, with emphasis on selecting the best-qualified person for the job. They do not discriminate against applicants based on race, color, religion, sex, national origin, or disability or any other status or condition protected by applicable federal, state or local law. " I think that if a company says that, then they are willing to accomodate their employees when need be.

Something I'll never forget is the fact that I have to listen to my body. I've always been the type of person who wants to please everyone all the time. As the years have passed, I've learned to mellow out sometimes. I've also learned to say "no" sometimes. If I were the person then that I am today, while I really loved my kitchen manager Ian, I'd have told him to fly a kite if he continuously asked me to come into work.

I guess my advice is too listen to your body first. And don't forget to check out the company your applying for's policy on those with disabilities...both visible AND invisible! ;-)

Saturday, January 5, 2008

Prednisone - The Drug we Love to Hate

I'm sure that the majority of people with Lupus (and various other diseases) have heard of Prednisone. I don't think the title of this post could have better stated how most of us feel about that's certainly the drug we love to hate.

Prednisone is an extremely helpful drug for many different conditions. I've been on varying doses of prednisone for 11 years now. The highest dose i've been on was 60 mg 3 times a day. That was when I first got diagnosed with Lupus. The lowest dose I've ever been on was 7.5mg once a day. Right now I'm on 10mg a day.

Now let's face it. Prednisone is an essential member of my medication arsenal. I've been on several different medications for various things, but the only medication that has always remained has been prednisone.

Aside from keeping my Lupus at bay, prednisone has gotten me out of many a sticky situation. When I had that Lupus episode in 2005 when I couldn't walk, move my hands, etc. due to a growth that had developed on my brain, it was high doses of prednisone that eventually shrunk the growth/tumour.

While this 'miracle drug' has done wonders in my life, I have to admit that it took me a long time to realize it. When I was at sick kid's hospital and was first introduced to this drug, I certainly was NOT impressed. First of all, this drug comes in 5mg pills and 50mg pills. I've since gotten used to swallowing a number of pills at once, but back then, I could barely swallow half a tylenol pill. Now instead of them giving me 1-50mg pill and 2-5mg pills, they gave me 12-5mg pills! Imagine having to swallow 36 prednisone pills everyday! And for someone who didn't know how to swallow pills, geez did those pills taste awful. The gross taste lingered in my mouth 24 hours a day. That's because by the time the taste was slowly starting to fade away, it was time to swallow another 12 pills! I remember one of the nurses at the hospital teaching me to put the pills in the back of my mouth on the back of my tongue. She said I wouldn't taste it as much. She was right...and I've been putting my prednisone on the back of my tongue ever since.

Sometimes it just got overwhelming. The nurses used to bring all of my prednisone in these little clear cups. I admit that I'm guilty of often hiding those pills in the drawer beside my bed until I had a chance to get up and flush 'em. Silly move, yes I know.

Now the worst thing about prednisone certainly isn't it's awful and bitter taste. The side effects are just terrible. I've been lucky enough to have experienced several of prednisone's side effects. I had to have cataract removal surgery on both of my eyes, one year apart. I'm 5'6 and I weigh about 120 pounds, and I have stretch marks from here until next tuesday. I have them on my lower back, on my elbows, and even a couple on my knees. The weight that I'm at now is usually what my weight should be, but combining kidney failure with prednisone is a definite recipe for weight fluctuation. That certainly doesn't help when it comes to stretch marks.

Another prednisone side effect that I have is avascular necrosis in my left hip and my right knee. Avascular necrosis basically means that there is a loss (permanent or temporary) of blood supply to the bones. This is why I've started up again with my physiotherapy, because my hip and knee joint are very weak, and sometimes painful.

Acne is something else I've had to deal with where prednisone is concerned. I have a good and knowledgable dermatologist, so that isn't too much of an issue anymore as it was before.

Let's not forget those super high doses of prednisone. In 2005 when I was on a high dose of prednisone, man was I ever hungry all the time. I craved sweets all the time...and I was sure to make everyone feel guilty for not giving them to me! I didn't gain TOO much weight, but man was I shovelling in the food like nobody's business.

I'm not sure if this is prednisone related, but I also get the shakes. If I hold my hand up, I don't think I can keep it steady unless I REALLY concentrate.

Last but not least, how can we forget the "moon face"? I used to have a pretty slim face, but ever since being on prednisone, my cheeks have gotten pretty chubby. People think my cheeks are cute and want to pinch them, but I really hate that. I remember a situation where I went to church with my family while I was on a high dose of prednisone. One lady in the church came up to me and said "You look like you've gained a lot of weight. I think you've been eating too much!" I was mortified! Who says that??! My sister jumped in and said "um...she's on medication". Then the old lady said "oh, is she on prednisone?" Then I said Yes. I later found out that she is (or was) a nurse. If she can see that only my face is fat and the rest of my body isn't, and ESPECIALLY if she's familiar with the side effects of prednisone, why would she say such a thing? Even if I wasn't on prednisone....who says such a thing??

So what's so good about prednisone, you ask? Well prednisone is an immunosuppresant. With Lupus Nephritis, my body's immune system attacks my kidneys. Prednisone helps stop (or suppress) my immune system, therefore stopping my immune system from attacking my kidneys. This is why prednisone is a popular drug for those who have gotten a transplant of any kind. It suppresses the immune system and prevents it from attacking the new organ.

So what do I think of prednisone? Hey, I'm not gonna lie. I hate that drug, and I can't wait for someone to come up with a less harsh alternative! But until then, I won't stop taking my prednisone. It's very, very necessary. Besides, stopping it on a dime after having taken it for so many years can really mess my body up. Prednisone suppresses your adrenal function in your body, and your body therefore becomes dependant on the corticosteroids from the prednisone and is unable to create it's own. If you stop prednisone abruptly, especially if you've been taking it for a long time, a number of things can happen, such as convultions, extreme fatigue, low blood pressure, low blood can even cause death!

So yeah, I know, prednisone stinks. But don't stop taking your meds suddenly. If it's time for it to be tapered, your doc will let you know!

Friday, January 4, 2008

Seeing an RMT for Lupus-related Reasons

Last year just before my vacation to Florida on the 9th of December, I decided that it would be a good idea for me to start seeing a physiotherapist again. It's been over a year, maybe a year and a half, since I've done any sort of physio, and I'm definitely paying for it.

I got on the net and did some research. After a bit of research, I found a clinic that is a walk away from my house....well...a long walk for me. Maybe a 5 or 6 minute drive. So I decided to check it out after my vacation.

The clinic looked decent. They have physio, chiro...and massage therapy. I decided that physio and massage therapy would be beneficial for me. I have my first physiotherapy assessment next Friday, but today, I did my first massage therapy session.

My RMT's name was Julie. She told me that my neck muscles are very tight, and I have some fluid in my back. She told me that the therapy that I'm doing now should be very good for the fluid in my back and also in my neck. My hamstring muscles are very tight as well.

The massage was great. Too bad it only lasted half an hour! I look forward to going again next week...and the week after.....I mostly look forward to seeing some changes!

I wish I could see the RMT more often. My place of work only covers $500 with of RMT per year. That $500 total also includes acupuncture, naturopathic doctors, etc. It simply isn't enough. I can't even remember how much my physiotherapy covers...I have to find that out. I'm gonna have to do some internet research to see if I'm able to somehow get additional funds for physio, since it isn't otherwise covered by OHIP! (Ontario Health Insurance Plan). don't LOOK sick...!

And thank God for that. When I'm out and about, I don't want people staring at me with their sad eyes thinking "oh...hmn...poor girl...she looks so ill". Anyone who knows me well knows that I hate it when people tell me their "sorry" about what I have to go through and stuff like that. Unless you're the one who made me ill, save your stupid apologies all the time! If you accidentally trip me, or you're flailing your arms while speaking and you accidentally smack me in the face, then by all means, PLEASE apologize to me.

On the other side of the coin, it can sometimes be a bit difficult when you don't look "sick". One situation in particular was when I had a perforated bowel. The emergency room doctor was looking at my test results and looking at me and was quite astonished. Usually people who have what I had have a yellowish tint to their skin, and they look REALLY bad. Compared to what I usually look like, yeah, I looked bad. But not up to the "bad" that they were expecting.

Another issue is the whole public transit thing. It's common courtesy to allow someone who's elderly, someone who's blind, pregnant, disabled, etc. have your seat on the bus. Well, sometimes I'm damned tired or sick and really don't want to give up my seat. I can't even count the number of dirty looks I've gotten on the bus for not jumping out of my seat ASAP when someone elderly gets on the bus. And who's giving me the dirty looks? All the perfectly healthy 30-something year olds who see me, someone they assume is like 18 or 19 years old and perfectly healthy.

The sad thing is, often times, these other people on the bus don't even have the time to give me their dirty looks. 9 times out of 10, I jump out of my seat anyways in order to let someone else sit. What irritates me is seeing these other people who look down to the ground or bury their faces in their free metro newspapers once they see someone who legitimately needs that seat get on the bus.

A few weeks before I was admitted to the hospital for my stomach/bowel thing, I was on the bus with my homey Andre. We were on our way home from work. As soon as we got on the bus, mannn did my stomach start to hurt. I didn't know it then, but it was definitely due to my perforated bowel. I was literally hunched over in pain and Andre was holding me up. If he didn't, I'd have been on the ground. It was around 5-5:15pm on a weekday, so all of the seats on the bus were already taken. Can you believe that people saw the pain I was in...actually looked me right in the face....then looked the other way? I was in shock. What's it gonna take? Eventually we got off the bus and Andre hailed a cab.

So I have one of those handicapped accessibility passes that go in the window of your car so you can park in those closer parking spaces. I haven't actually had anyone physically approach me to give me hell for parking in one of those spots, but man have I been given more than my fair share of shifty eyes by people passing by when they see me exiting my car. People have actually gone out of their way to stare at the windshield of the car I was in to make sure it had one of those accessibility passes. I don't know why they bother checking, because they still don't feel that I belong in that space anyways. Little do these people know that I'm anemic, or I just got back from dialysis and I'm freakin' exhausted on top of being anemic, or I'm suffering from a stomach ache (my stomach is super sensitive after being diagnosed w/ Lupus), or my joints hurt when I walk.....they don't know this. Too bad there isn't a miniature accessibility pass that I can tape to my forehead. Sometimes I feel like I should walk around with my right hand in the air so everyone can see my medicalert bracelet. Maybe then they'd be less judgemental of me?

As you can see, it ain't easy having Lupus in the first place. It's twice as difficult when everyone thinks you're a big faker! So please, the next time you get on the bus or you're walking through a parking lot and you see a seemingly healthy person ether sitting at the front of the bus or parking in that handicapped space, think of me! Think of those with fibromyalgia, migraines, learning disorders, Crohn’s disease, epilepsy, chemical sensitivities, mental illness, heart disease, cancer, developmental disorders, diabetes, brain injuries, chronic fatigue syndrome, rheumatoid arthritis, lyme disease, transverse myelitis.....need I go on??

Tuesday, January 1, 2008

Wanting to be a Better Me

Shouldn't you try to be your best self all the time, and not wait for something like a day on a calendar to dictate when you're gonna become your better self? Well that's what I think. But then again, I don't think that I was my best self this past year.

Yeah, I know, a lot has happened this year. I've dealt with a perforated bowel, I've dealt with EXTREME anemia/fatigue issues...I've dealt with issues in my own head too.

I've always been an active person. The whole concept of "take it easy" has never been easy for me. I always reflect upon my younger days, when I was student council president, on EVERY sports team (except baseball....I got cut from that team :/ ). And believe me, I was satisfied with nothing less than the HIGHEST marks. I couldn't wait to blow the doors off of high school. But my future was destined to be something other than I had imagined it.

I did a radio interview with my father and members of SOS Organ Transplant awareness team. We were on with a delightful lady named Tabby. We did this interview just this past Saturday. It would be Tabby's last day. I spoke truthfully and I spoke with confidence. Tabby commented on how strong I was, and was kind of shocked to hear that I suffered from kidney failure.

Everyone always comments on how "strong" I am. Yeah, I think so too. But at the same time, I suppose like anyone else, I have my moments too. People probably think I'm strong because I don't let them see me cry often. But having to stay home a lot and not go to work as often as I want to means that I'm home alone a lot. And what do you do when you're alone?

You think.

I think things to myself like...I wonder what life would have been sans Lupus. I wonder if I'd have finished school and have been happy in a full time job by now. Would I have bought my first place by now? Would I be engaged? Planning my wedding? Already married? Maybe I'd have the energy to go to the gym all the time, and I'd be super healthy. Maybe I'd have a child. Who knows?

On the flip side, if not for Lupus....would I be as close to my father as I am now? Would I have met the wonderful people that I've met? Would I have the same friends? Would I have gone to the wrong place at the wrong time?

I don't often think about that though. I'm always thinking about "Life without Lupus". Sometimes I'll just be sitting there, thinking "what kind of life IS this?". I'm 25 years old but sometimes I feel like I'm 65. I know it's important to listen to your body, and when my body is speaking, I hear it. But oftentimes I don't want to listen. I almost feel like if I don't do that thing that I want to do simply because I feel "tired", it's almost like admitting defeat. I hate to feel defeated.

I don't think I'll ever get used to relying on others all the time.

While I think that it's important to try to be your best self all the time, and not wait until something comes up before you decide to make changes, I also think (and hope) that this will be a year of changes for me.

I want to go back to school on a regular basis. I want to be done and over with that, and get into a real job. I want to be able to hold down a big girl job and be more self sufficient.

I want to try and be less depressed about my situation. Yeah, I said it. Depression. Thank God for the wonderful people around me. Some of these wonderful people don't know that they, in part, are what keeps me going.....keeping me from falling into a pit of depression, never to be fished out.

I want to go back to work for a full 20 hours a week. I don't know how possible that will be unless I either get a transplant or do home hemo, but I want to do it. Not for the money. Nothing like that. Just for myself.

I've never been negligent with my body, so I can't say that I've gotten ill or hospitlized due to my own negligence, but this year, I want to try and remain healthy. I don't want to be admitted to the hospital this year due to "sickness". I know that I'll probably have a plastic surgery date, and a transplant date, but those are different. I'm hoping that I can get through this year with as few hitches as possible.

When dealt a hand that doesn't appear to be the greatest, it's so important not to give up. It's ok to cry. It's ok to want to be left alone, and it's ok to segregate yourself sometimes. I think it's also important to talk to others and not make the decision to keep everything bottled in. Everyone has their crosses that they have to bare, and nobody is immune. This just happens to be mine.

I think R.E.M. said it pretty well.
When the day is long and the night, the night is yours alone,
When you're sure you've had enough of this life, well hang on
Don't let yourself go, 'cause everybody cries and everybody hurts sometimes
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