Monday, November 29, 2010

Flu-like symptoms

Man have I been hacking out a lung for the past week or so! I literally slept ALL day yesterday. I woke to eat and sleep. I also woke up in the morning only because my dialysis machine was done and it was time to disconnect.

I'm feeling a wee bit better, but still definitely under the weather. My number one priority is to get better as soon as possible....don't want any silly colds messin' up my transplant plans..

Vlogs?

I used my aeroplan miles to get myself this nifty little camera. Maybe when I learn to use it, I can make some vlogs to post to my blog..

:-O

P.S.: the pictures of my new video cam were taken with my blackberry torch :)

Wednesday, November 24, 2010

Suffering through Flu-like symptoms while kicking people out of my group

As I type through violent bouts of coughs, sniffles, and achyness, I'm thankful that I have a great group member for my Coaching assignment that is due on Friday.

As it stands, my group consists of one other person-Sandra. Most of the other groups in the class consists of 4-6 people. This is a 16-20 page report that we are responsible for producing. This report is about performance management and coaching practices of at least 2 different organizations.

My group did not start off as a group of 2. It started off at a group of 3. But, I had the VERY unpleasant task of having to eject one member out of the group. We all became a group 2 weeks ago. Sandra and I were desperate to get a third group member to reduce our already packed workload, and this third individual did not have a group at all. So after a brief discussion, we decided to allow the third person into our group.

It began to go downhill when the third person did not come to class the following friday. When I sent the person a email via my blackberry, the person responded by saying that he/she was on his/her way. I looked at my watch. 1:30pm. Class started at 12pm. You do the math.

We left class early as the remainder of the class was allotted to work on the assignment. Without any of the third member's work, doing any in-class work would be impossible. What a let down since the assignment was due the following friday. I sent the group member another email at around 2:45, and the response I got was the fact that he/she was still on his/her way. What? That indicated to me that this person probably hadn't even left their house when I sent the first email. Great.

So on the weekend, I set up a google doc page and shared it with my other two group members. The third group member wrote a bunch of stuff on the google doc. After 30 minutes spend editing just 2 paragraphs, I knew there was a problem. I barely understood what the group member was trying to say, and what I did understand was simply not pertinent when it came to the assignment. I asked the group member to send me the performance management document that they were drawing their information from...and they agreed to send it ASAP.

After about 30-45 minutes, the group member responded and said they could not send it now because they were still at school and could not find the performance management document. I sat there, staring at my blackberry, wondering why the group member didn't say this when I initially asked for it. That's ok... I responded and asked them to send it AS SOON as they got home. They agreed and promised to send it.

I was less than shocked when the next morning came and went and I still hadn't received the email of the performance document. I emailed again, just after 12, asking for the document. No response. I emailed again, this time stating that if I did not receive the document within 30 minutes, we were no longer going to use the organization that he/she was working on, and I had another performance document from another company, and I would start from scratch using that company.

An hour had passed. I began working on the assignment with the new performance document. After all, who knows if this group member was going to respond, and I had only a few days to come up with a whole lot of pages of information.

A few minutes after I had started, the group member emailed me and said that they would email the document to me shortly. I responded by saying that I did not want it, and I was starting the assignment with another company. The group member proceeded to send me a partial, non-sensical document anyways, about 40 minutes later.

At this time, I had emailed my prof and explained the situation. I told him that it was my plan to eject this person from my group. He responded and said that I should inform this group member that they'd be responsible for handing in an assignment on their own. After I essentially received the "go-ahead" from the prof, I very politely advised the group member that Sandra and I would be doing the assignment ourselves and no longer required his/her work. I removed the group member's access to the google document to ensure that they did not try to delete the work already done by Sandra.

The group member responded, asking for the work that he/she had done, since it was in the google document that they no longer had access to. I compiled the information and put it into a word document. I had even saved the group member's work, pre edititing by me, into a word doc, but at the last moment I decided to send the already partially edited part with the introduction I had created.

Before I had a chance to respond, the group member lashed out a bit, saying it was partially my fault as well as Sandra's because we did not wait after class for ever for them to show up *rolls eyes*. The group member also stated that their blackberry is slow which is why they did not respond quickly enough to my 30 minute deadline. I quickly shot that excuse down, as I have the exact same blackberry and mine works fine. I also reminded them that I had asked for the document the day prior, and it was technically over 17 hours late.

In the end, Sandra and I managed to bang the project out, in spite of the fact that we both have much to study for and much due, and in spite of the fact that I am about 5 minutes away from hacking out one of my lungs. Go team awesome!

So that's my story of having to eject a member out of my group. It's not fun...but definitely necessary. As the day went on I felt a bit bad and I told my father about it. He reassured me and reminded me that it was necessary for everyone to pull their own weight. What I had asked for was not unreasonable-I simply asked for an email of the performance management tool. If that proved to be such a chore...that's definitely not a good sign.

Oh, I forgot to mention. Prior to ejecting the group member, on Sunday the group member said that they could not work on the assignment anymore because they had an assignment due the next day. Ok. The next day, they once again said they had an assignment due, but if I wanted, they would stay up ALLL night to work on the assignment. Nice attempt at trying to make me feel guilty.

Didn't work.

Sunday, November 21, 2010

Colonoscopy and endoscopy results

On Tuesday Nov 9, I had my colonoscopy and endoscopy done. As promised, the doctor drugged me up quite nicely :). Unfortunately, my gag reflex got the best of me. Even though I was heavily sedated, I was still very much awake and conscious of what was going on around me.

When the tube went down my throat, I was gagging like crazy. Gagging to the point of tears in fact! The doctor and nurse both soothed me and repeatedly told me that it would soon be over...which it was.

Next was the colonoscopy. Honestly...I don't remember much about the colonoscopy (and that's an excellent thing). All I really remember about that is the doctor telling me to look up at the monitor that showed my colon, and then being in the recovery room. My sister came in shortly after.

When the doctor came in, she told me that the endoscopy showed that I have some ulcers on my esophagus (eep!). To remedy that, she presecribed me some drugs which will replace the omeprazole. Can't remember what they are called, but it's something like pantoprazole I think.

So now, to take my meds. Here's to hoping these ulcers clear up soon...


Sent from my BlackBerry device

Swollen knees suck

Avascular necrosis at its finest. You'll notice that the knee on the right is MUCH larger than the one on the left. And yes, its painful.

:(


Sent from my BlackBerry device

Thursday, November 4, 2010

The Blood Work Debacle

I cried.

I felt ill.

My world was crashing down on me.

I've said it once, and I'll say it again. If a transplant is not meant to be for me, then surely God has another plan for me, and I accept that. But I wish He would just show me some sort of definitive sign!

Well, watch this.

I went to see my rheumatologist last Thursday. My appointment was supposed to be at 10am. Appointments are rarely on time...and as someone who has gone to many a-appointment in my life, I've grown to accept that. But this time.. I was busy. So, I went up and asked when I could expect to be seen. The secretary told me that I was next. Since I had been waiting for so long, I asked the nurse if she could give me my blood requisitions and I could do my bloodwork now instead of later. She took the requisitions into the doctor that I'd be seeing before my real rheumatologist, had her sign the reqs, then gave them to me so I could do the bloodwork.

I went to do the bloodwork. Total amount of time that I was gone- about 5 or 6 minutes. At this point, it was already after 11am. When I came back, much to my horror, the secretary told me that the doctor took the next patient.

What?

She KNEW that I went to do blood work, and she (she=the doctor) KNEW that the clinic has it's own phlebotomist (Sister Esther) so why would she not wait a few minutes for me when I just waited almost an hour for her???

I was livid. I told the secretary to book me another appointment because I was leaving. I wasn't leaving necessarily because I could no longer wait, but I was really angry. Well, aside from that, if this doctor took an hour with the last patient, how long would she take with this one that she just took in?

"Please don't leave!" the secretary implored. I asked her how long the doctor would take..knowing that she'd have no idea. I knew I wouldn't stay unless I was going to be seen by a doctor in the next 5 minutes. She told me the next available appointment wasn't until February 2011. I told her to book it.

As the secretary very slowly and reluctantly booked the appoinment (she was clearly trying to think of what she should do to get me to stay) my REAL doctor walked out. Much to the secretary's relief, she told the doctor what had happened, and he quickly told me that he'd see me directly. Thank goodness.

So he and I went in and chatted. I told him that I was worried about my blood results and apparent trend that seemed to be leading towards a lupus flare.

When the doctor looked at my bloodwork on the computer, he saw something very peculiar.

Get this.

There were TWO sets of bloodwork for me on August 12. 1 set was normal (what my bloodwork usually looks like) and one set that was completely off. If I had drawn blood twice that day (which I hadn't) it would have been impossible for someone's blood work to change so radically.

The verdict?

All this time that I've been stressing, making myself ill, crying, etc..I had been crying over blood work that had incorrectly been uploaded to my profile. Those blood results belonged to someone else.

My doctor said that this was the first time he had seen such a thing in his whole career as a doctor.

On one end of the spectrum..i'm ECSTATIC that I'm not currently having a lupus flare. But on the other side...why me??

:S

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.

:)

Monday, September 27, 2010

Where's my call back, dermatology?

You know that feeling when you just feel....weird? That's how I feel. I've been having some strange pain in my right shoulder, my mouth/throat seems dry all the time, my appetite isn't as huge as it usually is...just weird stuff.

I'm just hoping and praying that everything will be ok.

It's been two weeks since my dermatology appointment and the doctor promised me she'd call me back after a week after researching the "strange" white blemishes/spots on my face. Where's my phone call?

This Saturday is my NKE designation exam! Eeep!!

I'm going to get a hair cut on Tuesday. It'll be a bit of a pampering for me...just for all the studying i've been doing. I'm considering getting a massage that day too! Too bad my work benefits don't cover hair cuts. Heh.

Ok, going to study for a bit longer, then I'm going to set up my dialysis machine and get ready for bed.

Oh yeah one more thing- i have the comments on my page set up in such a way that I have to approve them before they appear. It's funny how some spammers try and "sneak" comments on my post in an attempt to advertise on my page. In a previous post when I first mentioned the white spots on my face, some blogger webpage dedicated to "skin whitening" (everything on the page was in asian characters except for the words "skin whitening") commented on that post and said something like "i like your blog, keep blogging". Oh, they like my blog! How nice....hmm, interesting that a SKIN WHITEning blog comments on my post about WHITE SKIN spots.

Nice try.

Saturday, September 18, 2010

Updates!

So I know I have been absent from my blog. I started school this month and am taking 6 courses..! Much more than I've ever taken at once. One course doesn't have any tests except for 1 final exam at the end of the semester, and two other classes don't have any exams at, just assignments. I can handle those.

I went to see the gastroenterologist earlier this month. Although it has been shown that there is some bleeding in my stomach, she is convinced (like everyone else) that it's Lupus. Yeah, what ABOUT lupus? It's so convenient (for doctors) when someone comes/walks into their clinic and has lupus.

Me: My arm's itchy.
Them: Oh, it's probably the Lupus.

Me: Man, I forgot my watch at home!
Them: it's the lupus I bet.

Me: Can I get a big mac combo with a coke, lots of ice?
Them: Would you like Lupus with that?

Bah! I want answers, not just "well maybe it's Lupus"! Anyhow, the gastroenterologist has told me that her secretary will give me a call to schedule a scope. From past experience, it has been determined that I have a twisty/bendy colon, which therefore results in mucho pain-o for me. So, she said she's only going to do a partial scope, and give me lots of drugs. Hurrah Drugs!

I don't know if I mentioned this on my blog before, but I went to the dermatologist because of a skin problem I'm having. On my face, I have tiny little white dots. They are not raised or bumpy. They are smooth against my face. So, I went to see the dermatologist. She didn't seem to believe it was caused by my medication. She also checked my skin under a black light and determined that it was not vitaligo(sp?), so I'm pretty happy about that. What she DIDN'T know is...well...what it was. She called her one of her colleagues as well as a student doctor who was with her colleague to stare at my face. No dice. So, the dermatologist promised to research my "white spots" and call me back in about a week. I look forward to the phone call.

This wednesday, I'm going to repeat my cross match with my bro. Fun times! Stupid blood tranfusions screwing up my cross matchedness!

Other than that, I have spent most of my time over the past couple of weeks panicking about the NKE I'm writing in just a few weeks. I hope I pass. I've been studying a lot and would be crushed if I did not pass.

Anyhow, I will try to throw in an update here and there, but as you might imagine, I might be a bit too busy to report anything meaningful!

Tuesday, September 7, 2010

Not a happy camper.

My gastroenterology appointment was cancelled by the home hemo secretary and was rescheduled for November 4??! She thought that I would be out of town even though I told her via email 2 weeks ago that I WOULD be in town. But the nurses told her to cancel it as they thought I would not be in town even though I told them verbally. The secretary thought what they were telling them was the most up to date information.

Does it make sense that someone who is dropping their hemoglobin should have to wait and bleed internally for 2 months while they wait for a stupid appointment?? I don't want this low hemoglobin bs to hinder my kidney transplant prospects! I called the gastroenterology office back. After many busy signals, I managed to get through. Unfortunately my appointment time had already been given away!! She told me she had an appointment for tomorrow at 12:45pm, but I'm working tomorrow! Arghh!! The secretary at the gastroenterologist's office said that not everyone for Thursday had confirmed their appointment so she'd call me back...

...She just called me! (From her home!) There has been a cancellation for this thursday but at 2:15 instead of 1:45! Yay! Wow, blog complaining works! Expect more complaints from me more often!

Next complaint to come-why haven't I won the lottery yet???

;)

Sent from my BlackBerry device

Monday, September 6, 2010

Just checking in!

Just wanted to do a quick post to let anyone reading know that I'm ok. I had a relaxing week and it really made me feel better. I have a lot going on for the next month or so.

I have an appointment with Dr. Cino, the gastroenterologist, this coming thursday. Next tuesday, its the dermatologist for the mysterious white (flush with my skin) spots/marks on my face. Then during the last week of September, I have a repeat cross match to do with my brother since I had to get that transfusion a few weeks back. Then, october 2nd, the NKE!

I'm sure I will be a happy camper on October 3 when this hectic 4 weeks are done and over with..!
Sent from my BlackBerry device

Sunday, August 15, 2010

Tired

I'm feeling tired today. When I got transfused on Friday, I felt more energetic in the days following the transfusion. Now, I feel tired again. Not as tired as before...but still tired. Dear God, I seriously don't have time for a lupus flare right now (does anyone with lupus ever have time for a flare?)

But I have so many things to do- NKE exam, transplant...even my upcoming trip to florida (which I feel I REALLY need).

Please lupus tests, please come back ok.

Saturday, August 14, 2010

Ah c'mon

I got a call yesterday morning from Stella, one of my dialysis nurses. She asked me if I could come by the hospital to do a cbc. What? When I was at my rheumatology appointment I SPECIFICALLY asked the fellow/doctor that saw me that I had gotten a blood transfusion the week before and I needed a repeat cbc done. Sure, sure, she said.

I told Stella to check again which she did. She saw my c3/c4 as well as my double strand DNA blood work "pending", but nothing for cbc. Bah! I couldn't go downtown to the hospital on Friday as my Dad was unable to take me, so I have to go and do it on Monday. Geez!

In other news, I called my pharmacy and they managed to get a hold of the fellow and my medication dosage problems were fixed. Thank Goodness.

I felt a bit better last week, but I feel like I'm getting tired all over again...almost as if my hemoglobin is perhaps dropping again. If I had gotten the CBC done on Thursday like I wanted, Stella could have had an idea as to how urgently my appointment with Dr. Cino, gastroenterologist, should be. I just want it done now. I'm supposed to go to Florida at the end of the month and I really want to go. I definitely need a break...and we're only going to be away for about 10-12 days.

Hopefully everything works itself out. It usually does..

Thursday, August 12, 2010

This Just in

I went to the pharmacy today to pick up my prescription. When I got there, I found out that the pharmacy does not have that particular medication, and therefore they would need to order it in. It would arrive tomorrow. Ok, no problem.

Then...this:

"Um ma'am, the doctor didn't write the required dosage on your empracet. We don't know which one to order...we'll have to call your doctor and wait for them to call us back. Usually that takes a few days".


:\

Is it possible that some things just weren't meant to be?

I went to see my rheumatologist today. As per their normal protocol, I had to see the lupus clinic nurse first. She took my blood pressure, asked me a bunch of questions, including questions about my diet. She seemed surprised to learn that I'm not currently being followed by a dietician (no additional appointments needed, thanks). I'm not sure that there is anything substancial that a dietician can tell me now that I haven't already learned over the last 14 years. I got slightly lectured on diet, cholesterol, etc. It's always a bit of a pain to be told things you already know...but I guess everyone needs to do their job.

I went on to see the fellow first. She asked me which medications I'm on. Le sigh...the nurse I just spoke to asked me all of that. I told her that the nurse asked me all of that and I gave her all the information. The fellow flipped the page and saw the written notes.

After a few more questions and reviewing my blood results from last week, she explained to me that my c3 c4 values were a bit low *gulp*. They were not totally low, but not within range. An additional blood test was done today to re-check it. I pray that I'm not having a flare. I've been flare free for some time and I'd like to keep it that way. Cross your fingers for me.

In the meantime, Dr. Fortin came in soon after and suggested I take percocet for any joint pain since I cannot take naproxen. I should have asked if there is anything more permanent that I can take, as doping myself all the time isn't necessarily the best option. In the meantime, I'm content to take anything that will help with the pain.

If you've been following my blog for a while, you'll have read stories about all my hick ups that occur when it comes to transplant. Let's revisit/summarize.

1-The first time, we were good and ready to do the transplant...and then I had a lupus flare. Lupus flares push transplants back. This particular flare consisted of a growth on my brain, which resulted in me not being able to walk, move my arms properly, or talk at a normal rate and without drooling.

2-The next time, I was fine, but then my Dad was busy with work for a while, so that put the transplant on hold.

3-After that, both Dad and I were willing and waiting to do the transplant, but Dad was found to be ineligible due to his borderline blood pressure.

4- I was put on the transplant list. My blood type is B-, and I have a lot of antibodies in my blood, so I was forcasted to essentially expect to be on the list for at least 10 years.

5- Here I am after just having finished all of the testing...then I have to get a blood transfusion (which, at the very least, will require me to re-do the cross match with my brother). I have bleeding in my stomach, and my c3 and c4 are not within range.

I spend good amounts of time being "fine". Then, when the word "transplant" comes up...something always seems to happen. What's up with that? Am I destined to be on dialysis forever? Does God have another plan for me, or perhaps He simply doesn't want me to have this surgery? I'm a strong believer in the fact that if something is meant to happen, it will happen, and if things are not supposed to happen, they won't...but geez..I really want a kidney right about now. I really want to travel and do spur of the moment things without having to think of dialysis. *sigh*

Tuesday, August 10, 2010

Results are in...

...for the stool test.

Positive for blood.

What the heck is going on in my stomach? I wonder where the bleeding is coming from. While this is not good news, I'm sure many people who suffer from illnesses, chronic or otherwise, feel a sense of relief knowing that the source of mystery for so long finally has a source/an answer.

The likely culprit? Naproxen. To be honest, once I did the stool test, I had a feeling that it would come back positive and I know from past research that naproxen can cause bleeding in the stomach. I've been told to stop taking it, but I in all honesty ran out of naproxen about 3 days ago. I didn't run to the pharmacy to buy more when I knew I ran out...I wanted to wait for these results to come back.

That said, I've been feeling the effects joint pain wise. My knee and hip hurt. There's gotta be some sort of alternative. I'll have to ask the rheumy when I see him in two days. In the meantime, I'm going to call my boss and explain to her my MIA status for the time being...

Friday, August 6, 2010

I am transfused

I got my blood transfusion today. So that will definitely bring my hemoglobin up. Doc Richardson is also going to look at my mmf and my prednisone, as they are both known to drop hemoglobin as well.

On the way home, I asked my dad to stop at the 7-eleven to buy me a slurpee. While inside, another lady exited the 7-eleven and approached my half open window as I sat in the passenger side of the car.

"DO YOU HAVE ANY SPARE CHANGE FOR THE BUS?" she asked loudly. I told her I didn't. "WELL CAN YOU CHECK YOUR PURSE?!?!" she asked, again loudly, and in an agitated manner.

Mmmyah right. I'll pull out my wallet so this woman has the opportunity to stick her whole body into my open window and steal my wallet.

"I don't have any change" I responded.

"CAN YOU CHECK YOUR PURSE??!"

Oh man..what's taking my dad so long with that slurpee??

"NO. I just got out of the hospital and I don't have any money..!" I said, a bit louder than before.

"DID YOU CHECK YOUR PURSE ALREADY?"

"LISTEN. I just got out of the hospital. See?" I pulled up my sleeve to reveal my gauze and tape covered fistula. "So please, I don't have any change so please leave me alone"'

she responded "Oh ok. Well then..." and then she sauntered away.

When my dad returned a few moments later, I told him about the ordeal. He told me that she had just gotten kicked out of the 7-eleven, probably for harassing customers.

Can you check your purse. WTH?

Thursday, August 5, 2010

The "current" verdict is....

Get a transfusion.

As I mentioned, I had to repeat my bloodwork and therefore got a repeat cbc done. On tuesday, my hemoglobin was 64 (or 6.4). Today, two days later, my hemoglobin is down again, 62 (or 6.2)

How very distressing. Why is it that everytime I'm on the right track where transplant is concerned, something always comes up? My nurse called me this afternoon and told me the news, and that my nephrologist Doc Richardson wants me to get transfused.

I felt so empty after. I don't want a transfusion. So I decided to call my transplant coordinator (Julie Cissell) and see what she had to say. She reassured me. Worst case scenario, I develop a bunch of antibodies and I need to go on some sort of a program for that which typically lasts 5 months. I don't like the idea of waiting 5 months...but at the same time, I've been waiting this long. What's another 5 months I guess..? That is, of course, assuming that the worst case scenario occurs. Let's hope it doesn't.

:..(

The mysterious, ever dropping hemoglobin

I'm sad to know that as of yet, I still don't have any answers as to why my hemoglobin is dropping. I just surrendered another 8 vials of blood to my clinic which is required for my up and coming (and slightly doubtful) trip. Unfortunately, even though I brought blood work in at the end of July, the clinic in Florida wants bloodwork that was done within the last 30 days...and the bloodwork I did in July does not qualify.

I went in and saw a doctor today who suggested I do a stool test. Perhaps, due to one or some of my medications, I'm experiencing some sort of slow bleed in my stomach, undetectable to the naked eye. So, I'm going to do that and submit it as soon as possible.

Some of the drugs that I am taking that are suspect are Naproxen and (obviously) prednisone.

My protein levels are fine and my platelet levels are also fine. I am not (visibly) bleeding from anywhere. Does anyone have any suggestions??? As someone currently being worked up for transplant, I am trying to avoid a transfusion at all costs...!

Sunday, August 1, 2010

Hair progress

So I'm still working on taking great care of my hair. As I may have discussed previously, kinky hair is quite fragile and needs to be babied. In addition to that...I have an autoimmune illness. I'm sure that doesn't help either. That said, my hair has gotten thicker and I'm quite happy about that. I'm going to attempt to post both pictures that I have taken with my blackberry. The first pic was taken on march 14 2010 and the second picture was taken today, August 1 2010.


Sent from my BlackBerry device

Friday, July 30, 2010

Laptop is back- Still exhausted

I finally got my laptop back today from HP. So far so good- my left mouse button is no longer loose. I'm happy about that, but not so happy that I had to send it back a second time. Ah well, what can I say? We're all human and we all make mistakes sometimes so I guess they just overlooked it the first time.

Other than that, I gotta say, I'm still exhausted. What the heck is wrong with me? Why is my hemoglobin on this downward spiral? I haven't had it checked since it was 70-something, but I'm so tired and I feel rather crappy. I'm tired enough to sleep all the time. In keeping with Dr. Chan's aranesp every 5 days routine, I'll be giving myself another dose tomorrow night. I hate feeling this way. I just want to be able to do what I want to do in terms of working OT when I want to in order to get some extra cash, study for my NKE, etc. Gosh, Dr. Brien, I hope you have some magic solution to my issues when I see you on Tuesday.

Speaking of the NKE, I got a delightful email today from the HRPA. It seems that they have (already) assessed my transcripts and I am eligible to write the NKE in October! Woohoo! Not that there was any doubt, but it's always scary when there is a no nonsense deadline. What if they didn't get to assess my stuff until after the deadline...then I find out that I don't qualify for some reason? Man that would stink! But alas, I am eligible to write and I intend on passing too. Passing with flying colours.

Well, that's all for today. I'm going to study for maybe half an hour, then I'm going to hit the hay. If I wasn't feeling so anemic...I'd probably be out on the town at some club since its caribana weekend.

Le sigh.

Monday, July 26, 2010

Slow Down, Flow!

As I mentioned previously, my hemoglobin is on the decline. Last week I worked a bit of overtime when I probably should have just stayed home and rested. This is the ever existent dilemma for us Lupies. We sometimes feel "fine" and in turn, we overexert ourselves. My dilemma is the fact that I have some extra expenses that have come about due to the fact that I am writing the NKE (National Knowledge Exam) in October (God Willing). With that test, I've spent $250 plus tax to register for the exam and almost $500 on study materials. It is important for me to write and pass this exam.

There are two sittings of the exam, one in May and one in October. After this particular sitting off the exam, there will be a new requirement for exam writers- a university degree. I do not have a university degree as I am in college. That is not to say that I will not persue a degree in the future, but I would like to write this exam while the exam material/content is still relatively fresh in my lupus fogged brain (hehe). I'm pretty confident that the exam will go well as I have already begun the study process. This process involves using the study tools I purchased as well as going over some multiple choice questions as the exam will take on a multiple choice format.

My place of work has hired some new people, so my fear is that my days of having overtime hours available to me essentially anytime I want them will soon be numbered. With all the OT I worked, it made a big difference on my most recent pay cheque. *sigh*...I'll be careful.

I'm going to see the hematologist next week. I'm hoping that he'll be able to give me some information on what's going on with my ever dropping hemoglobin.

That's all for now. Time to set up the ol' dialysis machine and get some shut eye.

Tuesday, July 20, 2010

Tests, Tests, and More Tests

Today was a long day.

I dialyzed last night so that I could take my dialysis bloodwork with me to the hospital. After dropping my bloods off, it was off to the medical imaging department where I got a chest x-ray. The chest x-ray was quick. After that, I knew that I had to do an abdominal ultrasound, so I decided to keep my very stylish hospital gown on and throw my cardigan on top.

The abdominal ultrasound took about 35 minutes. The lady who was doing my ultrasound had another gentleman sitting with her. I cannot remember if he is going to be an ultrasound tech himself, or if he's in med school, etc. Either way, they were both nice. The only problem was the fact that she was talking/explaining things to him, and time was slowly ticking away for the crossmatch/tissue typing tests I had to do with my brother. By the time all was said and done with the ultrasound, it was EXACTLY 10am, the same time as my appointment in bloodwork.

I checked my blackberry and saw a message from my brother. I told him I was on my way. I rushed down there and met my brother. We waited for our tests. He got his done first. I did mine second-I also got and ECG done. I came back out and said goodbye to my bro. One more appointment to go- Transplant Coordinator.

I went up to see the Transplant Coordinator- yep, it was 10:58am and my appointment was supposed to be at 11am. We chatted for about 45 minutes and went through the "all you need to know about kidney transplants" book. Enlightening..!

As tired as I was, I met up with a friend for lunch. I'm glad I did...lunch was delicious, albeit the burger was way too big. But, the service was great.

When I got home, one of my home hemo nurses called me. Why did my hemoglobin drop from two months ago, in the 120's (or 12.0) to 100 (or 10) down to 74 (7.4)??? No wonder why I feel exhausted all the time :( I've been told to increase my aranesp intake to every 5 days instead of every 7 days. We'll see what happens...

Monday, July 19, 2010

A recent "Carrie" moment.

Just a little something that happened on Friday morning when I "thought" my arterial was done bleeding..! :/

Sent from my BlackBerry device

Tuesday, July 6, 2010

Appointment pushed up

I was pretty happy today to get a phone call from the ortho doctor's office. My appointment that was initially to be at the end of October has been changed to late August! I'm pretty happy about that, because to be honest, my knee and hip are killing me right about now.

I also have an appointment with a social worker in early August. If you know anything about transplant stuff, they make you see a social worker first who talks to you about all the stuff that can happen to you if you go through major surgery. I've been through many a major surgery in my life so I don't forsee this being a problem. I know I saw the social worker the last time I got worked up for a transplant, and I'm more educated now than I was then, so it should be good.

In other news, I have to send my laptop back. The left mouse click button isn't working properly-it's very loose. It causes me to double click things when I don't want them to be double clicked. Very annoying. Also, if I leave my computer on long enough (maybe 1-2 hours) and turn it upside down and crack an egg on it...I'd have breakfast. SOOO hot.

I bought my study package for my CHRP test in October. It cost a pretty penny (almost $500). So I hope I pass this test. I've been working a few extra hours here and there at work so that I can make some extra cash to help with the extra expense of paying for this test as well as the study package. I'm also (maybe) going on vacation at the end of August so that's a consideration as well.

Ok that's all for now...:)

Friday, June 25, 2010

Good Karma?

Firstly, I'd like to thank everyone who read my last post, whether you commented or not. I really feel loved by my blog community. To all of you who believe in a higher power, please keep both myself and my brother in your thoughts. Here's to hoping that a few months from now, I won't be taking pictures of my dialysis machine and posting them, but I'll be taking pictures of a big, grotesquely beautiful scar on my mid section and posting that- my wonderful battle wound sybolizing a brand new kidney.

Secondly- R.I.P. MJ. I'm still afraid to go down to the basement by myself because of the song Thriller. However, I do appreciate the song Billy Jean. If I didn't mention this story already, when I was a young tyke (probably 4 years old), my parents took myself and my siblings to Disney World. We were in an outdoor seating area eating lunch when all of a sudden Billy Jean started playing. I immediately dropped the french fry in my hand, jumped out of my seat, and started dancing in the middle of the seating area. Very much amused, other families eating their lunch started to throw money at me. I love MJ.


Today when I went outside to check the mail after completing my World Religions assignment, I noticed a letter in the mail not addressed to anyone in my family. In fact, the address was all wrong also. At first glance, the address seemed similar, but not quite. I did, however, notice that the street listed on the envelope was within walking distance to my house. So I went back inside the house, proofread my assignment one more time, then put on my birkenstocks and went for a walk to deliver the letter. I decided that I'd also buy a lotto ticket for Lottomax, which currently has a grand prize of 50 million dollars. So I delivered the letter to a very surprised and thankful receipient. She was shocked and pleased that I delivered her letter. I googled the "from" address on the letter and it was from a credit card company, most likely her monthly statement. After returning the letter is when I bought my lottery ticket. Will I win the 50 million? Hopefully I'll be thanked with ridiculous amounts of money for my good deed.

...I also rewarded myself and bought an orange and coke slurpee.

Wednesday, June 23, 2010

Bah! Neglect is Bad!

Yup I'm still here! I'm pretty busy these days. I've also been slightly under the weather today and the other day also, but I'm feeling better.

I finally wrote my labour relations final on Monday. I already got my mark back- I got 82%! Not bad, not bad! Now I'm beginning to get my stuff together for the NKE in the fall.

I've also been doing a lot of transplant stuff! I have an appointment in late July to do a bunch of tests. I found a living donor..! His name is- My brother! Hahaha. Hopefully all goes well as I have not forgotten my disappointment from when my father couldn't donate a kidney to me when he was previously approved to do so. So I'm cautiously optimistic.

My statistics class will be finished on June 29. There is still one more assignment and one more test my class is supposed to do before then. Hmm..I hope we make it..! I really want to get that test done and over with.


Oh, on Monday I also wrote my World Religions mid term. I didn't study as much as I would have liked as I was focused on studying for my labour relations exam...but I ended up with an 83% and finished the test in 10 minutes! Ahaha! It was an online test so I got my mark back right away.

K I'm going to go set up my dialysis machine. Hopefully I won't have to do THAT much longer! :D:D

Friday, May 28, 2010

I guess the nasal spray worked?

I've been using the nasal spray the ENT, Dr. Brown, gave to me over a week ago. It seems to be working as I haven't had any bad sinus-y headaches since then. I'm glad as the headaches were preventing me from doing what I wanted to do..!

I went to the drug store today to buy three prescriptions. I was shocked when the bill came to $183.54! Geez. Three medications. I just got paid today and most of my money just went towards buying drugs. Eeesh.

I wrote my stats test yesterday for night school. I hope that i did well. I know I mucked up on one of the questions, and the multiple choice questions were a bit difficult, but other than that I think I did well...!

The weather is absolutely crazy. I can't believe that heat records are being broken here...but hey, I've always said that I'd rather be boiling hot rather than just a little bit cold. Now I'm off to finish drinking my orange and coke slurpee :)

Tuesday, May 25, 2010

Rode my Bike Yesterday!

Yesterday was probably one of the hottest days of the year...but I was determined to ride my bike! I slathered on the sunscreen, put on capri lululemon pants, a light long sleeved zip up shirt, and off I went. I decided not to go for too long or too far as it was hot and I wasn't sure how much energy I'd have.

When I got on the bike, I didn't want to stop riding! I had a blast riding around. I look forward to a summer filled with much more riding..! :D

Saturday, May 22, 2010

Yay! I bought a bike!

I went out with my mom today and I bought a bike! I've wanted a bike for a while but just haven't purchased one. The last bike that I got was when I was in grade 8. My dad bought me a bike as a gift after graduating from middle school and also being appointed as the valedictorian. I was also class president in school at that time. So in order to date myself, I'll say that this all occurred about 14 years ago..!

That bike and I had many adventures. I went bike riding all over the city with my sister and/or brother, or my friend Nickeisha. I was super athletic and strong back then and had endless energy. I guess that's why I didn't notice that my bike weighed a trillion pounds...! I'm glad I rode that bike near everyday that summer, as it was November of that year when I was diagnosed with Lupus. I was not well enough to bike ride for a long time. When I was, I could barely bike ride for any meaningful amount of time as the weight of my bike exhausted me so badly. If I went bike riding with my sister, she would let me ride her bike while I would ride hers as hers was much lighter.

I got discouraged. I couldn't ride my bike because it was simply too heavy. I decided that I would get myself a brand new bike, a helmet, a bell, and all other meaningful accessories after receiving my tax return. But then I looked on the sport chek website and noticed that they were having a bike sale until May 24, so I decided to buy now, and replace the money I used to buy the bike and accessories with the money I will get when the tax return finally comes in.

I look forward to taking some time to myself to go bike riding and slowly build up some energy. Discipline will kick in when I have to tell myself I'm tired and I must stop. I think I'll achieve that by spending the first few bike rides simply biking in the school yard across the street when school for the children is over.

I'm a happy girl!

Sunday, May 16, 2010

Wedding

Last night was my friend's wedding. I'm still tired and it's almost 7 pm! I got home a bit late. The wedding was beautiful and the bride was stunning. I am so happy for my friend. The food at the reception was also great. The main course consisted of halibut, potatoes and asparagus. The desert was a chocolate and hazelnut mousse. I'm not usually one to be keen on desserts, but this particular dessert was great.

The music was great as was my friend's family and friends. Everyone was very nice and friendly.

After having gone through so much this year with that awful ear infection and virus, I was really happy to be invited out. It was really great.

That's all for now as I want to try and read a chapter in my World Religions text, answer the questions, and just get that out of the way. Then I can concentrate on studying for my Labour Relations final exam...!

Friday, May 14, 2010

Still coping with sneaky headaches

Man these headaches are irritating. I hope the ENT can "fix them" when I see him on Thursday.

Yesterday was my rheumatology appointment. After my friend Jennifer's story about Moronica, I went to my appointment and crossed my fingers, hoping I wouldn't have to see a fellow. My appointment was at 10am and my father dropped me off at around 9am. To kill some time, I took the hospital shuttle bus to Toronto General Hospital to pick up a new (and unbroken) wand for my bleach bottle for dialysis, and also to drop off the pager bill for my kidney pager at the transplant office. I grabbed a tea at the Tim Hortons, then got on the shuttle bus to go back to Toronto Western hospital. The ride is about 5-7 minutes.

I got there pretty much just in time and was pretty impressed with myself. I sat down and listened to my iPod, all the while avoiding eye contact with those people who want to do research studies. I have no problem with research studies, but most of the time the studies are much more involved than I am able to get...ie. you must show up at the hospital 3 times a week for 3 months for an hour each time. Um..sorry, can't do it.

Anyhow, I watched as people who arrived after me got seen by the doctor first. 10am turned to 11am. 11 am turned to 12pm.

The energy bar on my iPod was at the midway point as I hadn't charged it the night before.

Finally, at 12:15, I got called in. Called in by a fellow.

Nuts.


Anyhow, the barrage of questions already in my chart began. I did my best not to be curt, but I was not only frustrated with being asked repeat questions, but I had just waited 2 hours and was tired and cranky.

I finally got the blood results from my LAST blood test I had back in March. No lupus flare. I suspected that, as I knew my rheumatologist, who is very much on the ball, would have called me near immediately if he had noticed anything outside of the norm.

The normal examination occured. My left hip and my right knee, which have always been jacked up, are especially jacked up nowadays. Stupid avascular necrosis. After about 45 minutes of questions and examinations, the fellow went to call my doctor. My doctor suggested that I stay on my 8mg dose of prednisone. I have very prone to flare up in the past when my prednisone was dropped too low, but at the same time, I've never been on a low dose of prednisone while on plaquinel. My rheumy just doesn't want me to have a flare as that would definitely screw up transplant plans.

My rheumy also had his secretary book me MRIs for my left hip and right knee, as well as a referral to see the ortho doctor for my joints. I'm sure that'll take a good few months. I'm sure I'll get appointments for all three things in the two weeks I'm on vacation :\
I was also instructed to get x-rays of my hips and knees, which I did. When all was said and done, it was after 2pm. Ugh. I went home and relaxed before going to nightschool.

Thankfully the prof showed up this time, even though she was about 20 minutes late. The person who was supposed to be our prof apparently isn't our prof anymore. Oh well. She seems like a straight forward professor. What I didn't understand is the fact that she arrived late, but let us leave an hour early, even though we were 1 class behind since nobody showed up for the first class on the 11th. She really sped through a lot of the material in an attempt to catch up. I just hope I do well...!

That's all for now. My friend's wedding tomorrow...!

Monday, May 10, 2010

Only one more day...

...until my birthday!

Yep, May 11 is my birthday. When I think about it...I may soon need to change the name of my blog to ...*gasp*.the life of a 30 SOMETHING WITH LUPUS! AHHHHH!!!!

Anyhow, this past weekend was my friend's bachelorette/stagette party. We went to a club/lounge typed place. It was a good time. Before that, we had pizza and snacks back at her condo with a bunch of other ladies. There was lots of alcohol, but I didn't have much except maybe a glass of champagne. I'm not big on alcohol...I prefer to save my fluid intake for something I actually find tasty. I used to drink a bit more when I turned legal, but I quickly grew out of the "let's drink as much as I can in the shortest possible amount of time". I remember I went to a club once with some friends...I think I was 21, and I definitely drank myself into an oblivion. Let's just say the night ended with my pretty much being carried to a cab by a bouncer. Not a night I'd like to repeat.

Then again, who knows...when I get married and I'm having my bachelorette, I might want to drink myself silly too.

Anyhow, when it was time to hit the club, a limo came and picked us up and drove us there. I met a lot of my friend's friends, which was nice. Everyone was very personable and nice to be around. I got home kind of late, and getting home late totally throws my whole sleep/rest pattern out of wack. The actual wedding is next week, so after that I will be able to readjust to regular sleeping patterns.

My one online course for the semester has started-World Religions. I am determined not to fall behind as it is an online course...being taken in the summer. I plan to go on vacation with the family during the last week of August. That will be fun as it will allow me to finish school and not worry about anything while I'm away. We're going to drive this time instead of flying. I love driving to Florida, its just that we have never driven there since I re-started dialysis. I'm going to have to be super strict where my fluid intake is concerned.

Tomorrow will be my first day of my Business Statistics night school course. I can't wait to start...because the sooner I start, the sooner I'll be finished...!

Since my Labour relations prof gave me an extension on the course, I'm going to head to school tomorrow to go over my test results with her. I didn't do that great...I got 15.1/20. I know, not bad, but definitely not the "A" that I wanted. I will need to study hard for the final exam. She and I will discuss when I will write the final when I see her tomorrow.

That's all for now. Feel free to wish my a Happy Birthday! ;) (Oh, wish my sister a happy birthday too. I was born on her 8th birthday. Weird, huh?)

Thursday, May 6, 2010

A Friend's Experience

I've spoken openly about my frustration with doctors, especially fellows, etc. that don't know me. I don't mind speaking to them, but I really do dislike repeating myself, being asked which medications I'm on, when I was diagnosed, etc..all the things that are clearly listed in my chart. I remember once while I was doing in-centre dialysis, some unknown doctor who was the "fellow of the month" came in and asked me dumb questions about my anemia. He ordered blood tests and talked about how he was going to fix it. Man, all of my other doctors must have really been slacking off if this guy right out of school was going to cure all that ails me!

Anyhow, here is a story that my Lupie friend Jennifer posted on facebook in regards to her recent experience at a clinic appointment. Enjoy.



Just another episode about one of my many trips to one of my many specialists..

When seeing a specialist of any kind, more often than not you first meet with a "fellow." A fellow is a Doctor In Training/BRAND new doctor fresh out of school, sort of like when a law student graduates, then articles at a firm before being able to branch out on their own. Ok, so instead of meeting with my doctor, I meet with this fellow...to protect privacy, we'll call her Moronica.

Moronica starts off the visit with the usual, asking me some very basic questions that she'd know the answer to if she'd read ANY of my file. Its as if this is my first time at a doctors, and well, its not. So my first tip off is when I stated that I have rheumatoid arthritis and systemic lupus...she cut me off and asked which one I had, because you can't have both. *deep breah*...I looked at her, and in a combination of miff, fury and sick just said, "wow...listen, I've been living with this for 15 years now. I'm very VERY aware of what's going on with my body. Yes, it IS possible to have both." to which she replied, "so if you have rheumatoid arthritis, then you don't have lupus." Now I was pissed off, but working VERY hard at keeping myself in check. White knuckled, I took another very deep breath in, and said to her, "Again, wow. Tell you what, I'm going to sit here quietly for a couple of minutes and give you a chance to read my file. Go ahead, I won't interrupt because from what I gather, its going to take you a few minutes to take it all in." I calmly folded my hands, and sat there looking at her. She became muddled, then asked me to tell her what joints were affected by my arthritis. I told her "all of them" to which moronica asked me to be more specific. HOLY SHIZ! Another deep breath, and very very slowly so that she could understand, I started listing ALL of my joints starting with my jaw and working my way down to my toes. Then we get a tad more serious and discuss platelets. Mine are low, and other than prednisone there has yet to be a way to raise them. So, moronica mentions my low platelet count (which I had pointed out to her; the effing reason I was there in the first place)...she says, "So, other than prednisone what other methods have you used to raise your platelets?" At this point I slap the table and TOTALLY mocking her say, "well golly gee! do you mean to tell me there's a quick fix?? wow! And to think, all these years with all this highly trained medical staff, not ONE of them ever mentioned that to me! Tell me, what is it??" ...and then I looked at her, with false hope filled eyes...she was obviously embarrassed and started laughing nervously and then began to back peddle..."oh, well, I didn't mean it like that, I just meant have you changed your dose"....I cut her off and told her to move onto the next question. She resorted to asking me safe questions like my diet and exercise before finally realizing she was in over her head and went to get my doctor.

Finally my doctor comes in. I have to say, I LOVE this guy...he's brilliant, straight forward and doesn't sugar coat anything. Perfect. So he comes in with moronica and he's clearly in teaching mode which is fun to watch. He asks me stuff and we banter back and forth like two intelligent people, then he'll quickly turn to moronica and quiz her...each time she got it wrong. It was incredible. By the end of it, thanks to Dr. L, I left feeling pretty incredible and was anxious to share my good news with my husband.

Clot, damm you...CLOT!

I had a good sleep last night. I haven't exactly had any problems sleeping at night, but I often wake up not feeling rested enough. By default, my dialysis machine is set to 8 hours, but this time I set it to 8 hours and 25 minutes. That extra 25 minutes really does mean the difference between rested and unrested to me.

I woke up quite a few times near the end of my treatment to look at my machine. Based on the times left on my machine when I woke up, I seemed to wake up every 15-20 minutes. When there was 10 minutes left, I decided that it was time to disconnect.

I disconnected, stripped my machine, and took my needles out. I sat there for the usual 10 minutes or so, holding my sites, waiting for them to clot. My arterial clotted just as it should, but my venous was a bit more fussy, so I held it some more.

After 5 more minutes, I checked again. I stared at the site for about 3 seconds when it started to bleed again, so I put my tightly rolled gauze back on it. Geez. I really have to go to the washroom. Will this bleeding ever end?

After another 4-5 minutes, I checked again. Still bleeding! What's going on? At this point, i decided that I was tired of waiting. With much finesse and strategy involved, I used my chin to hold the site as I grabbed my tourniquet and positioned it over the gauze. I tightened it slightly (not too tight) so that it was holding the gauze. I then carefully got up, use the washroom, brushed my teeth, and washed my face. It was at that point that my father brought me breakfast. I figured that after all that I had just done, my venous should definitely have clotted by now. I very carefully took the tourniquet off and looked at the site. FINALLY.

I gently placed a bandage on my site and kept my eyes on it while I ate. It didn't bleed again.

Anyhow, that was the most exciting thing I did today. Haha. I stayed in bed and chilled.

:)

Wednesday, May 5, 2010

Citric Heat

I'm sitting on my bed waiting for my dialysis machine to complete its 51 minute citric disinfection, so I thought I'd post a blog entry.

I went to work today. It was my first 8 hour shift since I got that major virus. It went ok. I was pretty tired after the shift though. I'm going to have to re-learn how to cope with those shifts. But, so far so good I suppose. Only a bit of a headache today.

I can't wait to finish school so I can finally got a job in my field, hopefully with the company I'm at right now. This year will be my 7th year there, so I'd like to stay there if possible.

Hmm, what else? Oh, if you're reading this entry and you're bored, I recommend you "youtube" the song "Shiver" by Shawn Desman. I like it. I like the video even more.

Can you tell I haven't much to say today? <3

Tuesday, May 4, 2010

A second to breathe

For some reason my template for my blog disappeared so I had to fix it as best as I can. It's not exactly the same, but it's the best I could do.

Ever since I had that ear infection coupled with a virus back in February, I've been getting pretty bad headaches. I can't help but think that the two are related. My headaches are most painful in between my eyes, right in the centre of my forehead.

I told my nephrologist during my last clinic appointment and he suggested that I take tylenol, but if it didn't get better, I might need to see the ENT doctor again as well as get a repeat ct scan. Ugh, more tests! What else is new?

I finished doing my brother, my mom, my dad, and my taxes. To me, doing taxes for people other than myself is stressful. I always feel like I might screw something up and the government is going to come and fine any one of my family members a trillion dollars. Paranoid much? LoL.

Anyhow, the winter semester is over, and in spite of missing more than a month of school, I seem to have made it through relatively unscaved. I finished my hr planning, occupational health and safety, and compensation courses. My labour relations prof gave me more time to finish her class, so I wrote my mid term for her class yesterday.

I am also slowly but surely transitioning back to work. The worst part about that is the terrible headaches. But I'll be getting a super sweet and comfy chair for my desk soon, so I look forward to that. I'm sure it'll make my day a lot easier.

This summer, I'll be taking Statistics for 2 months in night school. I hope I have people who love/are good at stats who read my blog, as I'm sure I'll be crying to my blog about it shortly :S

Friday, April 30, 2010

I'm back

...but with a heavy heart.

A few days ago, I planned a post about how I've faired since the massive ear infection/virus I suffered through, and how I've faired where school is concerned.

But I'm not going to write about that today.

I was perusing the facebook page of one of my friends. This friend is someone that I met while I was in in-centre dialysis. She was one of the hospital workers who transported patients from their rooms to dialysis, or from their rooms to medical tests/procedures. We became pretty close over the years...as would be expected considering my hospital stay track record.

Anyhow, I was on her page when I saw a status update that shocked me. She had R.I.P Hortense in her status.

Who's Hortense? Well, she's a dialysis nurse. She was probably in her forties. I didn't see her too often when I switched to the morning shift, but I saw her often when I was in the evening shift. I remember a point in time when I stopped seeing her for a while. Then, she returned. I greeted her and told her I had been thinking about her, which I had, since I hadn't seen her in a long time. She told me she had been sick...but she was back now. She wasn't my nurse that day, but she was in my main area. We chatted and caught up. This was probably 3 years ago. Who know that that would be the last time we'd have a meaningful conversation?

She died fr0m cancer.

It's just so unreal to me, because I remember all the times when I've been ill while in dialysis and she along with all the other nurses have been there for me. They all kind of take on this "super human" status to me...even moreso than doctors sometimes. That's because it's the nurses who roll up their sleeves and get in there when you need something.

Man, I'm so sad over this.

Saturday, April 3, 2010

Sorry for my Lack of Posts!

I have such great readers who always look out for me. Sorry for not posting. I've been really busy...!

Since I was pretty much out for the entire month of February, trying to keep up with appointments, work and such is difficult. I feel so disconnected!

But I'm well and good. I will post more often after I get over this strech of...disconnectedness..!


<3

Wednesday, March 17, 2010

Stupid RO

Dear Mr. Reverse Osmosis,

Why must your pump fail at 2:30am, the night before I'm supposed to go back to work for the first time since getting ill?

Not cool, Mr. Reverse Osmosis. Not cool.


Sent from my BlackBerry device

Friday, March 12, 2010

Appointment with the Rheumy

I went to see Dr. Fortin today. As usual, first I had to see the resident doctor first, then Dr. Fortin. I usually don't mind seeing the resident/fellow/etc first, but this time around I really didn't want to. My appointment was at 10:30am and I had to be at school to get my test back for 12pm. Well, let's just say I didn't get to school until 12:40pm.

Anyhow, I answered all of the repeat questions (ie "what medications are you on?" "um, the same ones on the chart in front of you...") and I also explained the last 5 weeks of my life to the doctor (while I was explaining, I realized that I missed my appointment with my hemotologist that was this past tuesday...oops!). He examined me and said that it was his opinion that I was suffering from some arthritic symptoms, but did not feel that it was lupus related. When Dr. Fortin came in, he said that he would schedule an appointment with me to see the osteo doctor in regards to my hip. My left hip gives me a lot of pain in addition to my ankles, shoulders, fingers, etc. But since I have avascular necrosis in my left hip, Dr. Fortin thought it was worth while to see the osteo again.

In the meantime, he had my bloodwork repeated to check and see if I was flaring. My other blood work didn't seem to indicate I was flaring, but then again, Doc Fortin is the professional.

So that is all for now. I'm tired. It's 12:52am and I should really be sleeping, however I find myself going to bed at like 2am every night because I'm watching the Real Housewives of Atlanta, OC, New Jersey, etc. Man I'm a mess.

Oh, and how does an 84% in HR Planning sound for someone who missed over a month of class? Good?? :D I'm overjoyed!!

Thursday, March 11, 2010

Appointment tomorrow

I mentioned previously how I was trying to get an appointment with my rheumatologist but he unfortunatley was not available. Well I managed to get an appointment for tomorrow to see him, so I'm happy about that. I somehow don't think that my joint pain is AS severe as before, but trust me, it still hurts. And painful joints are not normal...and advice advising you to take tylenol and go to the emergency room if it does not get better?

Also, not normal.

I've been struggling through a couple of classes at school. Man is it ever exhausting. The classes that I attended were only 2 hours long, whereas classes are normally 3 hours long. I guess I'm just building my energy back up. It's difficult...but I can do it.

That's all for now.

Saturday, March 6, 2010

Hurray!

Check out this letter I got in the mail:




You know, it feels really great to get recognized like this. This award goes to the top two people in the entire school who took this course last semester! I'm really happy and proud that I managed to get a mark so great that it warranted such an award. And, AND, more importantly, managing to get this award in SPITE of everything!


Dear Lupus, please shut up.

Thank you.

Weee!

Thursday, March 4, 2010

check out this video my friends made for a doritos contest!

Watch and help them win!

Wednesday, March 3, 2010

Passing the Buck

Last week Wednesday after getting my dialysis supplies delivered, I went to see an ENT doctor. He and a medical student looked in my ears and did not seem too concerned. A preliminary hearing test was done, and this test showed that my ears seem to be ok up to 15 decibels. But, just to be sure, the ENT wanted me to go and see an audiologist. Unfortunately, the audiologists had left for the day by that time, so I would need to come back the following Wednesday.

Luckily this week is reading week at school so I could go to appointments freely...and I had one appointment each day from Tuesday-Thursday.

Yesterday, I had an appointment to see a bone doctor. My last bone scan showed that my bones were quite weak. It is always hard to prescribe bone drugs to dialysis patients. The doctor assured me that I am young and...well, I guess she was trying to say that I'm resilient. She prescribed me a nasal spray to use, and hopefully if I get a transplant in the near future, she can precribe me more effective drugs.

Prior to my appointment, I went to the home dialysis unit to get my cbc checked. We've been checking that regularly. But I also wanted to get my wbc and c3/c4 checked as I've been experiencing some joint pain, especially in my shoulders, fingers, and wrists, for a couple of weeks. So, if you're experiencing joint pain, who should you call? Your rheumatologist obviously! So right then and there in the dialysis unit, I called.

Unfortunately my rheumy is away until Monday, so I was put on the phone with someone who said they were taking my doctor's place until he returned. After giving this other doctor the run down of everything that has happened to me in the last month, the first question this doctor asked me was: have you taken tylenol?

I'm annoyed. Instantly annoyed. For crying out loud please don't talk to me like I'm some sort of idiot. So what it I did? My joints are NOT SUPPOSED TO HURT, so in my opinion whether or not I took tylenol is irrelevant. At any rate, I told the doctor that I hadn't taken tylenol. I personally don't see a need to load myself up on even MORE drugs that won't do anything. I was asked why I hadn't taken tylenol, and I explained why. I was then asked if I had taken ibuprofen. Again, I said no. I told the doctor that I couldn't remember the reason why, but I was told not to take ibuprofen in the past. The doctor seemed shocked as "we always tell lupus patients to take ibuprofen". I told the doctor that no two patients are the same. Is that not obvious?

I was then asked if I had gone to see my family doctor. I said no. Again, I was asked why. I explained that it was not an easy task to get an appointment with my family doctor, and also this was obviously a rheumatology issue so it only made sense to call me rheumatologist!!

I was then asked to rate my pain on a scale of 1-10. I said between 6-7. The doctor then said..geez. Get this:

"It doesn't sound urgent to me". What? I asked the doctor how they defined "urgent". My question was ignored as the doctor went on to say "take tylenol, and in the morning if your pain is still there come in and see me". Over the course of a few seconds, "come in and see me" turned into "go to emergency".

Annoyed, after the doctor said go to emergency, I said "have a nice day", and I used my finger to click the phone off before this doctor could say anything else. SOO annoying! Luckily by that time, Dr. Chan had walked in and heard the exchange between myself and this doctor. He was shocked at the response I had gotten and gave me some real information. He said that they would check my cbc results, and when I came back for my audiology appointment the following day, if my hemoglobin was holding strong, they would put me back on the stopped MMF (cellcept), and this should help. I was happy with that response.

When I came back to the hospital today for my audiology appointment, I went to the home dialysis unit where my nurse told me that my hemoglobin was 97 (or 9.7). So it's on its way up, which is great. My c3/c4 hadn't come back yet, but my wbc was 13 (or 13000). Normal range is around 4.5-10 (or 4500-10000), so it is a bit high. My nurse and I both figured it must be lingering infection from my ear.

I went to see the audiologist and then the ENT. I looked at the report as I walked back to the ENT, and it showed that I had mild ear lost in my right ear, and minor ear loss in my left. I don't know which one is supposed to be "higher" or "worse". The (new) ENT looked in my ears and at the report and said that everything appeared to be ok where my ears are concerned. He didn't feel that I needed more antibiotics. He said that after 1 month, 70% of people no longer have the popping sensation in their ears. After 3 months, that number goes up to 95%. If my ears still have fluid in them after that point, I would need to go back to the ENT whereby they would remove the fluid manually.

This doctor didn't feel that my wbc had anything to do with my ear, and he felt i should go back and talk to my nephrologist about that. I have an appointment to see him tomorrow. So we will have to see what he says. I do feel that perhaps this wbc value might have something to do with the pain I'm having if it is some sort of rhuematalogic(sp) response.

But hey, I'm not a doctor...so excuse me while I go and take some tylenol.

Tuesday, February 23, 2010

OH&S

I wrote my OH&S exam today. It was purely multiple choice and true/false. Ugh..there were so many questions that I thought were "all of the above". I hope I did well...it's only worth 15%, so if I do well, great, but if I didn't...well...there is an assignment that I'm sure I'm going to ace with my partner and is worth 25%. So, there is recourse if I do not do well.



Tomorrow is my appointment with the ENT....

Sunday, February 21, 2010

Still on the Mend

My ears feel different. They seem to be popping a little bit more. I don't know if that's a good thing or a bad thing. I'm gonna guess its a good thing...maybe whatever fluid that was packed in there is getting "less packed"? Bah that probably didn't make any sense. But I wouldn't say it's a better sensation...just different.

When I swallow, I get a horrible feeling of slight pop in my ear. It's difficult to explain. I'm just hoping that the antibiotics are working.

I have two exams this week. Plus a dialysis delivery scheduled for Wednesday.




I trimmed off a lot of my hair today. It was damaged...because I haven't been taking good care of it. I plan to change that.

That is all for now...

Friday, February 19, 2010

Operation- Prednisone Drop

I sit here doing my best to type. My ears are still plugged. My head hurts. My uppers arms/shoulders as well as my thighs/hips hurt.

I went to see my nephrologist on Thursday. My hemoglobin is "holding steady" at 81 (or 8.1). Still quite low, but much better than 50-something.

After much talk, it was decided that I will remain on the antibiotic, but I can begin to drop this 40mg prednisone dose. I am to drop the prednisone by 5 mg daily, and when I get to 10mg, I'm doing to drop my 2mg until I get back to my previous standing dose, which waas 8mg. The main reason for raising the prednisone was the fact that it was uncertain whether or not these manifestations I was experiencing had something to do with Lupus or not. It has been safely determined that it does not have anything to do with Lupus, therefore its ok for me to drop my dose.

In the meantime, I have now finally gotten an appointment to see an ENT. I'll be going next Wednesday. There were some problems getting me an appointment as apparently all (or most) of the ENTs in my hospital all went on some conference and won't be back for a number of weeks?? The first initial solution was for me to go to emergency, ask to see an ENT, and kinda cross my fingers. I don't know about you, but my idea of a good time when your limbs hurt, your head hurts, and you're hard of hearing is NOT spending what would very likely be an ENTIRE day in the emergency department. When I refused that option, my very diligent nurse managed to get me into a clinic appointment run be residents and not by staff. I'm all about residents...but I'd feel better knowing for sure that a staff doctor would be there to make "final comment". Oh well, I guess everyone is a trained professional.

I'm oh so squirmish when it comes to my ear. Did I mention previously that when I was at sick kids hospital, a student doctor was looking in my ears with one of those instruments, and she shoved it in to far and actually cut my ear? I had blood trickling down the side of my cheeck by the time she was done! Since then...not a fan of people getting too rough around my ears.

Well...that's all for now. Will blog later.

Wednesday, February 17, 2010

What did you say?

Being hard of hearing is so very frustrating. I find myself having to look at people's lips in order to help me understand what they are saying. It's getting kind of scary for me. I'm sure people have had ear infections, have been hard of hearing...and it has gone away. But...I'm scared.


I've resumed another round of those antibiotics again. It's quite apparent that this infection or whatever it is is quite stubborn...so I'm going for another 7 days.

Yesterday, I went to see Dr. Brien, my hemotologist. Bless his heart for remembering me from the last time. He remembered the screamfest that occurred when he performed a bone marrow tap on me the last time. This time, he said that he wanted to do some regular blood tests FIRST before subjecting me to another bone marrow tap. He would make some changes to my medications, wait a few weeks, and go from there. I asked him if I did need another bone marrow tap, if I could somehow be sedated. I simply cannot take that kind of pain again. He mentioned that they do sedation at hospitals like sick kids, but not usually in that particular hospital for that reason. He said we would figure something out if and when we cross that bridge.

He examined me and checked my ears. His reaction when he looked in my ears was enough to make me nervous. He was pretty alarmed at what he saw- it was red and probably full of pus. At this point I'm pretty curious at what the inside of my ear looks like, so I asked him if he had some sort of camera that he could use to show me what it looked like. Unfortunately, he did not.

Dr. Brien was concerned enough to want me to be seen by an ENT doctor. If I have to be seen by an ENT, I hope it's Dr. Irish, the ENT who took care of me when I had a mysterious bump/cyst on the inside of my lower lip. He's really nice and he's at the same hospital as Dr. Brien.

My legs and arms hurt. I'm still walking like an old lady and I'm still off balance. What's even better? I have to go to school tomorrow and do a presentation. I have to do it. I can't lose these marks...I've already lost and missed so much. I refuse to let this semester be a bust because of some dumb ass illness. But i'll only go to school for that presentation, then I have to go to the hospital again for another appointment with Dr. Richardson. I need someone to do something with this blasted 40mg daily dose of prednisone. I can't take it anymore. How did I do 60mg 3 times a day when I was in sick kids hospital?

I have 3 tests/midterms to write in the next 7 days. I think I'm going to have to drop my labour relations class. I've simply missed too much and I don't think I'll be successful in the course...and success is absolutely vital.

I will post more updates as they become available. The act of keeping my head upright makes me lightheaded. I want to lie down now.

Sunday, February 14, 2010

When does the "feeling better" part kick in?

To be honest, I still feel pretty crappy. It seems like all of these remedies being implemented in order to make one thing better makes something else worse.



When this whole thing started, my prednisone was bumped up to 40mg a day from 8mg. I look in the mirror and I see the "moon face" kicking in. Not a fan of that.



I just took the last of my 7 day run of oral antibiotic Levofloxacin. It is a 500mg pill. I don't know what it is, exactly-whether its the prednisone or the antibiotic. but my whole body is just off. My upper arms/shoulder area both hurt a lot. This morning it took me about 30 minutes longer to disconnect myself from my dialysis machine because the act of lifting my arms up to reach for a clamp or a tube was painful. I feel the same pain in my upper legs/hips. My hearing is still altered by this ear infection. If I swallow, I can hear clearly for about 5 seconds before it seems to dim down again. Food and water doesn't taste the same-especially water. I made my father stop and buy juice yesterday, because water just seems to taste gross to me as of recently.



I don't know if the stopping of my cellcept has anything to do with all of these changes, aches, and pains I'm feeling. My sinus ct scan that I had done on Friday seemed to appear clear according to the doctor. Tuesday will be my hematology appointment. I still have a small cough. I still feel dizzy, and I walk slowly and carefully like an old woman.



I feel guilty. I don't want to be at home doing nothing. I want to be doing what I anticipated I'd be doing at this point in time- going to school and going to work. With school there are always a lot of group projects and assignments, and I hate feeling like I'm out of the loop. I hate feeling like I'm putting undue stress on others, or like I'm letting others down. If I toughed it out and went to school, I couldn't even carry my backpack with the pain I feel in my arms. I couldn't walk around for any long periods of time with the pain I feel in my legs.



And, on top of everything, my Mommy is in Nigeria. Oh how I miss and need her.



My Dad has been a saint. He is doing everything for me, down to making my meals, getting me water, calling me when he's not home to make sure I'm ok, etc.



I just wish WHATEVER this underlying illness or illnesses are that are affecting me so badly would just leave me alone...and if it must bother me, why can't it wait until the summer when I'm done all of my HR courses? It's not enough to just pass my courses...I have to pass them and I have to do well.



Man, this seriously, seriously sucks.

Wednesday, February 10, 2010

I'm still here....

...just dizzy and tired from this ear infection, cough/cold, and antibiotics.


Will blog later

Saturday, February 6, 2010

Shady Business

I sit here exhausted, but I wanted to give an update.

My hemoglobin is on a downward slope. In the span of 24 hours, it went from 68 to 62 to 54 (6.8 to 6.2 to 5.4). I have had bloodwork done for many different viruses, so I suppose when I go back to the hospital on Monday morning they'll be able to tell me if I have any of these viruses. Also, what started off as a mild blockage in my left ear turned into severe blockage in both ears and terrible pain.

The doctor that saw me (a doctor I had never met before) and told me that my severe ear (and subsequently, face, neck, behind the ears,etc) pain was probably due to my low hemoglobin. I was in some of the most severe pain I had ever experienced. The idea that he attributed it low hemoglobin was, quite frankly, shocking.

When he came back for a second time, i told him how severely I was in pain. I told him this as I squinted through the tears in my eyes from all the pain I was in. Again, he told me that it was probably my hemoglobin and asked me if I had tylenol. I told him that I took tylenol and it did nothing for me. He said i would probably feel better after I finish getting the blood I was currently receiving from the transfusion.

I was shocked. Was he really going to allow me to sit here, in severe pain and crying, based on the fact that "maybe" the transfusion would help...??

I continued to squirm around and cry quietly as the home hemo unit was quite full and I didn't want to "bother" anyone. One nurse came around and saw the pain I was in. She put her hands on both sides of my face starting from my temples and gentle pushed her hands into my face. She gently moved down my face and kept doing this. It seemed to slightly bring relief to the searing pain in my face.

When my nurse came around and I told her again about my severe pain, she asked me what the doctor had said and if he had looked in my ears. I told her what he had said about the hemoglobin, and that he didn't bother to look at my ears. In anger, I also said "NOBODY HERE IS HELPING ME!!" rather loudly. My nurse went off to call the doctor, who by then had already left the home hemo unit.

When he came back, do you know what he said to me? He said "How can I help you? What's wrong". Seriously?

I repeated "My ears hurt." I went on to tell him it was my entire face hurting. He was still convinced that it was my hemoglobin but he finally agreed to look into my ears. When he looked, he said both of my ears/ear drums were clear. That said, he finally"relented" and authorized the ordering of "Tylenol 2". I knew this wouldn't help either...but what could I do?

The worst part was that the tylenol needed to be ordered from the pharmacy. My nurse told me 10-15 minutes. Ugh.

After about 20 minuts, I asked again. The nurse then told me the pharmacy said 30 minutes. "Why so long??" I asked, now upset. I had sat there for hours in pain being paid no mind, and now i'm being told I have to wait a total of nearly an hour for pain medication?? She told me that it is what the pharmacy said but she would follow up. A few minutes later my nurse informed me that another nurse was on the way to pick it up.

I got it, I took it, and 30-45 min later, as I suspected, no difference.

Oh, did I forget to mention that this doctor had asked me to STOP taking my cellcept/mmf because it can sometimes lower your hemoglobin?? Oh wait, you mean the medication I've been taking without incident for about 12-13 years???

I've had a situation where a doctor I never met before in my life came out of nowhere and started stopping/changing stuff. 2 weeks later I was in the hospital...getting wheeled in a hospital bed to the procedure room where they would be entering a cathetor for dialysis into my chest. I always knew my kidneys would fail, but this trigger happy doctor certainly sped up the process for me.

I thankfully got a second opinion. After being home for a bit and massaging my temples from the severe pain I was in, I began to feel fluid trickling down my right ear. I grabbed a tissue and saw the clear fluid that was slowly coming down my ear on the tissue. It also started to come out of my other ear too. Um, weren't both of my ears "clear"?? After speaking to another healthcare professional, I was able to get ear drops which made me feel a million times better.

Soooo irritated. I wonder what I will say on Monday when I go back for a follow up??
 
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