Sunday, October 24, 2010

Time to Exhale..!

I've had a rough couple of days! I studied hard during the week and especially on Thursday for a Coaching and Performance Mgmt exam on Friday. I studied until about 10pm, set up my dialysis machine, and went to sleep. I woke up at around 4am and I wasn't feeling good at all. I felt totally nauseated. I recirculated my machine and got up to go to the bathroom. I got there just in time as I got that "watery mouth feeling" that you sometimes get when you're about to throw up...and I did. I sat grabbed my cell phone and called my Dad (aka the house). I heard the phone ring a few times as I waited for Dad to pick up.

He must have seen my number on the call display as I didn't say much when he answered the phone. All I could do was throw up. He quickly came upstairs and comforted me. He made me a hot water bottle, tea, and gave me some gravol to take. He encouraged me to re-connect myself to my machine. I did, but about 30 minutes later I had to go to the washroom again. I decided to just wash my blood back and forget about dialysis for the rest of that night.

My stomach was in knots. I didn't eat much out of the ordinary, except I ate lunch at a place across the street from my school. But I would think that if that lunch were going to make me ill, I'd have felt ill before 4am in the morning. I know this because I did a gastric emptying test before...and I've been told that I actually digest food slightly quicker than an average person.

That said, I had to miss my coaching exam on Friday and work on Saturday. My prof for that class was very understanding as I knew he would be. After all of the stress of school and the NKE, I'm just glad that this week is reading week, so I can catch up on assignments, maybe catch up with a few friends...but mostly just RELAX!

Thursday, October 21, 2010

Great News!

My bro is cleared for transplant! Now, all I have to do is get MYSELF ready, aka stop dropping my hemoglobin and hopefully simmer down what appears to be an up and coming lupus flare...and I'll be all good..!

More good news: the 5 doses of Venofer seemed to work! My iron saturation is at 44%, and my hemoglobin went up from around 66 (6.6) to 86 (8.6)! I'm really hoping that this gastroenterology appointment in early November will find something and hopefully stop any bleeding that may be occuring in my stomach.

Hurrah for my brother..!

Thursday, October 14, 2010

30 Things You May Not Know About My Illness

I saw this on fellow blogger Melanie's blog and I thought i'd fill it out also. It's very telling.

1. The illness I live with is: Lupus, end stage renal disease, avascular necrosis, (what appears to be) chronic anemia.

2. I was diagnosed in the year: 1996

3. But I had symptoms since: I didn't notice anything until just days before I was diagnosed.

4. The biggest adjustment I have had to make is: Not being able to be involved in everything. I'm still not used to saying "No, I cannot do ____ because I'm tired/sick. I was diagnosed in November of 1996, and in my school year prior to that, I was class president, class valedictorian, and involved in every sport/aspect of school. I went from 100%-0% in just a few months.

5. Most people assume: That it is probably not as bad as it is because I do not really let on that I'm sick or in pain when I am.

6. The hardest part about mornings is: Waking up on time to disconnect myself from my dialysis machine and get to wherever it is that I'm going on time, whether it's work, school, etc.

7. My favorite medical TV show is: Trauma: Life in the ER. I love the dramatizations as well as the bizzarre cases.

8. A gadget I couldn't live without is: My Crackberry. My blackberry.

9. The hardest parts about nights are: Trying to actually fall asleep. I think there might be an underlying fear in my mind that I'm going to turn around/turn over and rip my needles out of my arm or rip the lines off my dialysis machine.

10. Each day I take: a wheelbarrel full of medication.

11. Regarding alternative treatments: I think it's always great to try as long as it's safe and doesn't conflict with my other treatments/medication.

12. If I had to choose between an invisible illness and a visible one I would choose: It's hard to say. With an invisible illness, because people cannot physically see it, sometimes they cannot empathize. It's hard being on the bus and being forced to stand up for someone with a broken foot because no one else will get up and you don't want to look like a jerk. At the same time..I really don't want to have a visible illness whereby people will look at me and feel "sorry" for me.

13. Regarding work and career: There is no way that I am letting Lupus or anything else get in the way of anything I really want to do in life.

14. People would be surprised to know: Well, most people don't know that I have a dialysis machine sitting in my bedroom, nor do most people even know I'm on dialysis at all. If they do...they don't know or understand the gravity of it.

15. The hardest thing to accept about my new reality is: That I have to slow down and not do things as frequently/quickly as I used to.

16. Something I never thought I could do with my illness was: Travel, especially with renal failure. It was only a few years ago that found out about travelling while on dialysis. While it's definitely not ideal, it is much better than staying at home all the time.

17. The commercials about my illness: What commercials? The one that shows a million faces? It does not portray this devastating illness at all.

18. Something I really miss doing since I was diagnosed: Doing things on a whim..now, everything has to be planned. No spur of the moments road trips or anything like that. That and doing physically demanding activities.

19. It was really hard for me to give up: Sports. With my joint pain, I cannot run, I cannot play basketball, etc. Very devastating for me as I've always been an active person.

20. A new hobby I have taken up since my diagnosis is: Blogging and Cake decorating :)

21. If I could have one day of normal again I would: Go for a jog/hike.

22. My illness has taught me: To be patient with myself and others.

23. One thing people say that gets under my skin is: That I need to take care of myself. Really? So washing down my medication with a bottle of Jack Daniels isn't considered taking care of myself? SHADDAP!

24. But I love it when people: Give me hugs. I love hugs.

25. My favorite motto, quote, etc is: What you cannot change, don't let it change you. My Daddy taught me that one <3 .

26. When someone is diagnosed I would like to tell them: I've been there. Just be strong, be optimistic, and don't give up.

27. Something that has surprised me about living with an illness is: How much control you lose. I couldn't believe how weak I got and how much my body changed because of it.

28. The nicest thing someone has done for me when I wasn't feeling well was: Visit me with food. Not much beats that.

29. I'm involved with Invisible Illness Week because: I actually didn't know about it until now. I guess I'm late! :\

30. The fact that you read this makes me feel: Really good-and I hope it gives you a peak into my life! :)

xoxo

Managing

The end of the week is near and it couldn't have come any sooner. I administered my last dose of venofer yesterday. I hope it is working somehow. I still feel pretty tired.

Other changes that are occuring in my body are worrisome. I don't understand why my blood pressure is high (150/90-ish) and why my ankles are periodically swollen. I am almost afraid to do repeat blood work as I don't want to see my lupus tests. If you have an illness...you know how it is. You want to be well all the time...and if you're not well you want to be better. But, that said...I'm just not ready for bad news.

Anyhow, I'm in E-Business class and really shouldn't be blogging. Check in later.

Tuesday, October 5, 2010

Missing Jackets..

I don't know if I mentioned this before, but during the first week of September, I was about to head out the door on a Saturday morning to go to work. I noticed that it was chilly outside, so I went to grab my leather jacket. It was no where to be found.

I looked high and I looked low. Nowhere. I know that I had it hanging over a chair in the dining room. You see, I don't put my jacket in the hall closet. It is packed full of jackets belonging to my sister and my mother. I have maybe 2 or 3 other jackets in there, one of them being a vest. I had another leather jacket that was in there, but it got scratched up by metal hangers and ended up on the floor. And, on top of everything, if I put my jacket in a particular part of the closet, it ends up getting moved elsewhere, possibly because I've invaded the space of another closet user. So, for these reasons, I don't bother putting my jackets in there.

I know my sister had moved my jacket to another table because she was expecting a nurse to come by the house to assist her with her medication. I was already late for work, so I grabbed another, not so warm jean jacket and headed out.

When I got home, I continued to look for my jacket. Oh, I know! If I look under my two winter jackets, also hung over dining room chairs, I'll definitely find my leather jacket.

Wait...where are my TWO WINTER JACKETS??!?

Yeah, that's right. All three of my jackets went missing. What the heck is going on here?? My mother and father essentially tore the house down looking for my jackets, as my low hemoglobin did not allow me to search in a way that I wanted to. Couldn't be found. I do remember back in the summer my father taking a few bags of clothing to the goodwill. I find it rather impossible that my jackets could get caught up in those bags...but anything is possible.

So, I spend a lot of money on my jackets. I consider them an investment. I don't plan on replacing them anytime soon, and, especially my winter jackets, I need something that will keep my extra warm as I already have an illness and don't need or want to expose myself to the elements without being sufficiently warm enough. Then, in a flash, $1000+ worth of jackets are gone.

Here are pictures of the three missing jackets:


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For the below jacket, mine was actually brown and not grey.
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So I ended up having to purchase all of the jackets back. The leather jacket was (luckily) on sale, and my sister gave me a mall gift card that she had received as a gift, so that helped. The 3rd (brown) jacket, I purchased used off of kijiji. I bought it in black instead of brown...holding out that maybe.. JUST maybe, my brown jacket might still turn up. As for the wool hooded jacket, I couldn't find that specific one, so I bought a military typed jacket:
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So, while it ended up costing me about $600 in the end, I was able to replace all of my jackets. My father gave me money to purchase the coat that I bought off of kijiji.

The mystery of the missing jackets remains open..

Monday, October 4, 2010

I don't have time for this!

I'm getting worried about my blood work.

I last did blood work in early October. My forever dropping hemoglobin at that time was 66 (or 6.6). I don't have an appointment to get a scope of my stomach done until November 9. In the meantime, in an attempt to avoid getting transfused again, my nephrologist has suggested 5 doses of Venofer via my dialysis machine for my next 5 dialysis runs. Then, we shall check the hemoglobin again.

To make things worse, I'm not currently having a lupus flare, but my lupus indicator numbers are certainly creeping up. They have been slowly climbing over the past few months. Did the stress of this exam push me into a flare? Who knows. I haven't had a real flare in a few years. It's hard for me to say "oh yeah, I'm having a flare because I have joint pain". I don't get joint pain anywhere except my knee and my hip...and that's because I have avascular necrosis, so that pain is there whether I'm flaring or not. Not to mention...if I am flaring..what happens? I go back on high doses of prednisone: the very drug that caused my avascular necrosis in the first place. Crappy.

I don't see my rheumatologist until the last week of October. I'm going to do full bloodwork about a week before I see him so that he has the most up to date blood work to look at.

Man, I gotta say...I'm worried. I have 6 courses this semester and I want to finish them all. I don't want to have to drop anything. God, help me through this and continue to give me the strength that you've been giving me all along...

Saturday, October 2, 2010

Bah, it was hard!

So I can finally close the "study for the NKE" chapter in my life. I studied, I paid copious amounts of money for study guides, I did group studies with others...and after about 2.5 hours, it's all done and over with.

Maybe the title of my post is deceiving. I don't feel that the NKE was difficult per se, but I do feel that the study guides that I used did not seem to prepare me enough for the exam. I know that the people who create these guides do not have direct access to what is on the test, so they can only do the best that they can. In fact, I actually do feel a lot more knowledgeable and comfortable with HR concepts after using some of these guides. I just feel that some of the questions asked on the exam did not seem to translate. Well, I will have to wait until December before I get my mark. If I did not pass, I will need to go to get a degree before I can officially obtain my CHRP, as the deadline for being able to get that designation without a degree is December 31 2010, and the October 2 sitting of the exam was the last sitting of the year.

Well, we will have to see how it goes. But, I am not a quitter. If I have to write again, I will. But one thing is for certain-that CHRP designation WILL be mine.

:)
 
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