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
 
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