The Life of a 20-Something With Lupus

My day consisted of lying in bed, sleeping. I am happy that I was actually able to sleep. I woke up this morning and started to give my blood back. When my tubes were clear, I began to disconnect myself from the machine...but I didn't feel well. I thought perhaps I had miscalculated and taken off too much fluid. I looked at the numbers I had entered into my machine as well as my dialysis logs. They both looked fine. While still connected to my machine, I stood on my nearby scale. My weight was perfectly fine and I hadn't dried myself out. I resumed disconnecting myself and pulling my needles.

I didn't feel well. It had nothing to do with being too dry. My stomach hurt. My body hurt. I felt exhausted. After clotting my arm off, I got up, brushed my teeth and washed my face, exactly as I would on any Saturday morning. I tried to force it. No matter how often up Lupies try to force ourselves to do something, it's important to realize that if Lupus isn't having it...trust me. Lupus is NOT having it. My body was weak, my stomach felt crampy. I had to listen to myself. No work for me today.

I often do NOT listen to my body. I think if I did, I'd never go anywhere. But sometimes, you just have to listen to your body. I had everything all planned for today. I was going to go to work during the day and be home by 4:30. I was going to study for a few hours as I have two tests next week, then leave my house at around 6:50pm. Today is my friend's birthday, and we were all invited out for dinner. It was a really cool looking restaurant - lots of healthy, organic food.

We make plans.

Lupus laughs.

So I realized that I can simply type a post from my cell phone and by emailing to myself I can post it to my blog. This will serve as more of a test post.

Neat!
Sent from my BlackBerry device

Today was a pretty long day for me.

It started off early this morning. I got up just before 7am and got ready to go out. I went to a friend's house to get my hair done. That whole process took about 3.5-4 hours. I was lucky enough to have my Dad pick me up and drop me off at the subway. I also had a dialysis clinic appointment today.

I got to the hospital early, so I took the time to greet the nurses in my old in-centre dialysis unit. I was happy to see everyone and they were happy to see me. It's sad going back to that clinic, because I know that they're going to tell me about another person in the unit who has passed on. Today was no different.

After my visit, I headed back upstairs for my actual appointment. I waited for a few moments before being greeted by Fabian, one of the tech guys. He informed me of a new system/form they were implementing whereby I would have to fill out a document about my machine. The questions are yes/no questions, basically asking me the general questions like am I disinfecting my machine, am I doing the citric acid rinse, am I testing for bleach after disinfecting, etc.

I was a bit surprised (and I won't lie, disappointed) when a doctor other than my nephrologist called me in, when I saw my doctor just a few moments before. I knew that meant they were putting me in with a fellow. This means a billion questions when it is already 2:10pm and I have to get out of here, get back on the subway, and take another bus in order to get to school before 3pm.

I didn't get asked too many questions which is great. He did, however, question some of the medications that I'm taking (like cellcept), and also some that I truly felt that he felt I should be taking (like magnesium). I kind of get annoyed when they do that. My doctor(s) of a trillion years know what medications I'm on, and if they're happy at where I'm at, don't go and muck things up by taking things away-throwing extra things in. I already went through that during my pre-dialysis years. One doctor's quest to be a superhero and change all of my medications resulted in a serious flare and subsequent dialysis (dialysis that I feel didn't have to begin at least for another several months if not for that particular doctor). But, I digress.

He discussed my Feritin. My feritin was too high for his liking. Ah well, it hasn't changed in several months and I am just fine.

My real doctor came in and this fellow recited my history to my doctor. I left with a prescription for Losec (omeprazole).

After that, I hurried on down to school for business communications class. The prof handed back our mid-terms. She totally embarassed me by announcing that I got the highest mark in the class!! Why would she do that!!? I got 49.5/50. Why couldn't she just give me that extra .5 of a mark!!? I lost .5 because I accidentally put a question mark somewhere that should have been a period. Bah! Oh well, 49.5 is a-ok by me!

Classed ended at about quarter to 6pm, so I walked to the subway, which is about a 10 minute walk, and took the subway and the bus home.

Gah! I'm tired!

Today is a much better day for me than yesterday.

I was stresed and sad yesterday for a number of reasons. I just knew that if one more minor thing happened to me...if a fly landed on my keyboard as I typed through teary eyes..I was bound to have a total and complete breakdown if uncontrollable scream-crying. Luckily it did not get that far.

I was afraid to go to school. I had written a test 2 weeks prior and I was to get it back today. You ever have a test where you study and you study, but the material never seems to settle in your brain? That is what I was experiencing for this test. I studied and I studied. No dice. Simply just not as comfortable as I felt I should be.

I went in, wrote the test, and faked a happy smile the rest of that day.

So today, I arrived in class a bit late. Everyone else had already gotten their tests back. Mine was in a pile amongst others. I saw my test - 61/80, plus 2 extra marks would be added on later due to a computer error. So...you're saying I got 79% on a test I was convinced I failed? WOO HOO!

I do that a lot. I think I've done poorly on a test when, in fact, I've done well. I'm very happy with a B+.

Then today, my brother sent me a text message informing me that our mutual cell phone company was giving him grief over a phone upgrade he wanted to do. They said he'd have to pay $449 + an extra $35 to get this phone because he still has about 10 months left in his 3 year contract. Whaaa?? A new subscriber would get this same phone for $299 flat! He spoke to different levels of representatives, but none were willing to budge.

Since I work for a bank, I am able to get a corporate plan. I spoke to my corporate representative and he told me that if I added my brother's account to my own, he would not only get a discounted monthly price plan, but he'd also be able to get his phone for $299 (and no extra fee!)

Hey, this is my big brother we're talking about here. He's one of the best men I know. He's there for me 24/7. He taught me how to play video games, but even more I enjoyed watching him play as much as he enjoyed playing games when we were both younger. He allowed me, his younger sister, to hang out/bike ride, etc with HIS friends! What kind of brother does that? I'll tell you. An awesome one.

So I promptly text'd my brother to see if this was a good arrangement for him as it was a good arrangement for me. So, we went ahead with it..and now we're just waiting for his new blackberry to arrive. I'm happy because it saves my brother a whole heap of money not only on the phone, but also on the monthly plan. Just a mere fraction of what he does and has done for me since I was born, but it still made me feel great. I wish we had done it before so we could have saved him some money on his monthly plan in the past.

I'm a happy girl today. And thank you to those who read, sympathize, and comment!

--Yup, I got the virtual hug from Miriam via DSEN. Thank you too!

I feel like I write a lot of "just one of those days" posts.

My day was fine. I went to work today. Work was fine. Then, I went to school. School was also fine. Then, I came home. I was fine.

I sat in bed and looked to the right. I saw my dialysis machine. I could feel the tears building up in my eyes.

I see my machine everyday. In fact, I sometimes feel happy to see it, knowing that I do not have to go to the hospital frequently just to do dialysis. Other times, like today, I'm like...why do I even have to think this to myself? Why do I even have to be "happy" about not going to the hospital?

Most days, I'm ok. Other days, it's like...Im here, going to school and working part time, just trying to get by. Everyone else I know in school is doing that too...but they're not dealing with endless boxes of dialysis supplies, dialysis, doctor's appointments, kidney pagers, etc.

I'm sorry, but the whole thing just sucks sometimes.

+I did manage to get some much needed rest, but rest does not necessarily equate to sleep. For the past while I've been having trouble falling asleep, even when I'm on my machine. I'm going to see my doctor on Thursday so it is something that I'll definitely need to discuss with him when I see him.

Yesterday I went to the movies with my friend. We saw the movie Good Hair. It's basically all the things black women go through to maintain their hair. It was all quite funny. Much of it applied to me...except for spending $1000 on a weave/hair piece. Not I, said the fly! I'd never spend that much money on stupid hair. Dumb!


After that, I caught up with a friend of mine and we went for sushi. I haven't seen him in about 5 years or so. It was great to catch up with him. I hope another 5 years won't pass before I see him again.

Yesterday I went to the pharmacy and was very annnoyed with the service. They had called my doctor to get a prescription refilled for me exactly a week earlier, so I went to pick it up. First, they had filled the prescription but couldn't find it. So, I had to wait for them to fill it again. Then, they told me that they were going to give me 25 days worth. What the heck is 25 days? Why not 30? They told me that was the amount my doctor had authorized. \

Lies.

So, I went to the bank across the street and stood in a 20 minute lineup to get some cash. When I went back to the pharmacy, much to my chagrin, they hadn't started filling my prescription. I stood there and I stood there for about 15 minutes. I got tired and sat down for another 15 minutes. Then, one of the pharmacy assistants walked by and says "Uh, your medication is ready." Why the heck didn't they tell me??

By now, there was a lineup of 3 people. Oh, this shouldn't take long, I thought. So I waited. The lady at the front of the line had asked for 3 months worth of medication so she wouldn't have to come back to fill her prescription every month. She told them this earlier in the morning to drop off the prescription. Much to HER chagrin, they only filled it for one month. So, they had to do it again. This took about 20 minutes. I was exhausted.

After they FINALLY finished up with her, the gentleman in front of me waited and waited only to find out that they did not know which medications he needed, even though his wife had called them in, as they were for her. Since he didn't have a cell phone and they didn't offer up a phone, he had to leave. What a waste of time!!

When all was said and done, I spent over an hour in that pharmacy. Ugh.

Anyhow, I'm going to go an "Fall Back" before I connect myself and go to sleep so that my clocks are all the right time when I wake up.

This coming from the girl who works for a BANK!

On saturday night, i went online to purchase the UFC fight so I could watch it. Sure, it's pricey, but I really wanted to watch that particular fight card. So I googled "watch ufc yahoo". I clicked on the yahoo website and entered in my card information.




Little did I realize until it was too late that this wasn't even the yahoo website! Look at the picture i just posted. The website says "YAOOO" instead of "YAHOO"! How could I be so dumb to fall for this scam!
I called my credit card company immediately to inform them what had happened. They immediately shut my credit card down. I emailed the company to tell them what happened, but the response was some canned reponse telling me how to use their website, which was a website for accessing tv online, some obviously illegally. I responded again and told them that I had NO interest in their service!

When they responded again, they offered me a discount off of the membership price. What?? Didn't I just say that I didn't want this service?? They then went on to say that there was a strict 7 day policy, after which no refunds would be granted. If I still wanted a refund at this point, they would deduct 9.99 from the cost refunded to me for "administrative costs". What the??

I emailed back, more angrilly but calm, and told them that I had NO interest in there and to refund the FULL amount back! They responded again discussing their 7 day policy and the 9,99. They told me the 50% off was still open to me, and if I didn't want it to email back. How long was this back and forth business going to go on?

I finally called them today, and after much discussion, the lady finally agreed to refund my credit card. I'll keep an eye on it...and if I see the refund then I'll call my credit card company and inform them.

The name of the charge on my credit card is marketbill.com. The website I went to was liveyahoosports.info. I wish I had paid more attention and not have gotten myself into this nonsense! I'll report back if this company does refund me the FULL amount back, and also which steps I take if they don't!

This week is reading week. That means no school all week! That also generally means that I am pretty much at the half way point of the semester. I couldn't be happier to be progressing.

I went to work today from 10am-1:30pm. I used some over my banked overtime hours so that I could sleep in this morning. I want to savour reading week as much as possible. Work was busy today. Even though I got there an hour and a half later than usual, I still felt like I was there all day!

After a long day at work, I got on the bus and headed home. After being about half way home, I noticed that some of the people on the bus were looking out the window, looking shocked. I got up and moved to the back of the bus, as at that very moment a lady with a baby carriage, a baby, and a toddler got on the bus.

As I headed back and also looked out the window, I noticed a man stumbling up the sidewalk. He swayed from side to side, dangerously close to the flow of steady traffic. I gasped out loud as I saw him step right into the street and in front of a now abruptly stopped taxi cab. The obviously intoxicated man put his hand up in a "Stop" motion to the cab. Other cars in the lanes near the cab screeched to a stop also, unsure of what this man's unpredictable next action would be. By that time, my bus, which was travelling in the wrong direction, started moving. I noticed the taxi cab driver talking into his walkie talkie. I hope he was telling his dispatcher to call the police, as that man was on another planet! I just hope he didn't step into traffic at the wrong time and get hurt.

This week will be a week of utter relaxation for me. I plan to catch up with friends, sleep in, etc. I will also do the other important chores, like bloodwork, laundry, etc.

I have this weird bump on/in my right knee. It's not huge, but it is quite big. It's perhaps the size of a medium sized marble. It moves around and sometimes it seems to sneak under or behind my knee cap and I cannot find it! I first discovered it about a month ago...then I "lost" it, then just this evening when I got out of the shower I found it again! What the heck is it?

I wish words could describe how much I'm looking forward to my week off. I'm so looking forward to it that the anticipation of it might actually be even sweeter than the experience itself. These weeks at school seem like they've been dragging on endlessly. I think it's the idea of having to wake up SUPER early to disconnect myself from my machine and actually be somewhere that is an hour and ten minutes away by 8am.

During rush hour.

It ain't easy. Dialysis is a tiring process, but imagine getting onto a crowded bus with a backpack full of books only to find out that there are no seats anywhere. *sigh*.

There is so much that I want to do next week. I want to continue to organize my dialysis supplies room. I want to see that Chris Rock movie about hair. I want to get MY hair done. I want to get a manicure and a pedicure. But above all things..I want to SLEEP!

I only have 3 more hours of class tomorrow...then freedom for a week! I like school, but I don't like having to wake up early. But then, I must say that I will not be heartbroken when I'm finish school and can (hopefully) have some more normality in my life.

I wonder if that kidney pager will ever ring?

So I'm gonna take some time to write a short post while I wait for my machine to post.

School's going well. In spite of all the tests I've been doing all at once, my lowest mark so far is 74% in economics. I was actually pretty happy with that as I walked out of that test not feeling very confident.
I got 94% on my Business Communications assignment which is pretty rad. I have a Business communications test tomorrow. It's an open book, use all of your assignments/powerpoint slides test. How does one study for such a test? Do you need to??

I got a blackberry. I've had it for 1 day and I feel that it will come in great handy. I wish all of my friends had blackberrys so we could BBM each other instead of text message.

I can hardly wait for my machine to be done rinsing and such so I can connect and SLEEEEP. I feel so depriaved. And, next week is reading week so I'll have a whole week to relax and work on assignments and such. CANNOT WAIT!

This most stressful part of this half of the semester is done. I just wrote my Training and Development test and all I can say is that I'm glad it is over. I studied hard, had little rest, and now the only test I have left is business communications...and it's open book! So that test should be ok.

Now, I'm just gonna relax as next week is reading week! I can refocus and get ready to do it all over again!

I've been thinking of creating a post about this a long time ago but I have been way too busy. Well, as they say...there is no better time than the present!



This post will simply be a ranting and complaining post about things that irritate me while on the bus.



1.- People who stand right at the front of the door.

Why do people have to stand there, ESPECIALLY when the bus is empty? I cannot count how many times I've stepped on a bus and had to shimmy my way past a large bag carrying person who chooses to stand right in the front! Why can't they move to the back? And what's with the people who stand right beside them, making it virtually impossible to enter the bus altogether?



2.- People who WON'T get up for others.

Let's face it- I have an invisible illness. People won't look at me and think "wow, that girl has lupus and is a dialyzor...she's probably tired. Let me offer her my seat". Ok, I get that. But, when an elderly man steps on the bus with a cane, what's with people looking down/avoiding his gaze because they don't want to give up their seats? It's so rude! This also applies to people with small children and/or baby carriages. I can't count how many times I've gotten up for people on a full bus when I wasn't even sitting at the front of the bus...more like the middle. I distinctly remember one woman (in a nurses outfit) putting her head down and closing her previously open eyes right after she saw the elderly man I mentioned previously get on the bus. Really??



3.- Smelly Stinkies!

Yes, it's definitely your choice to smoke. What I hate is when you sit down beside me and I have to choke on the smell of stale cigarette smoke permanently imbedded in the pores of your clothing and probably your skin. It's so gross! I remember once actually getting up and sitting elsewhere because someone who smoked sat beside me. Ugh!



4.- Listen to how cool my music sounds!

Why do people have to blast their iPods/cell phone music players so loud? Honestly, I really don't care if Beyonce thinks you shoulda put a ring on it, or if Kanye West thinks you're being heartless! Yes, I also listen to both artists on my iPod, but at a normal volume! There is no reason for me to be on one end of the Subway and I can hear your music when you're on the other side! And nevermind irritating me...that's bad for your hearing!



5- aaAAAaaaaCCHHHOOOO!

Ugh! You are so gross! Don't sneeze on me! Haven't you seen the commercials? Sneeze in your sleeve! That goes for coughing too! I can't say I'm a big fan of you yawning in my face either. I mean, sheesh! Let's be considerate here!

6- Mmm...tasty!

People get hungry. It's a fact of life. But if you're going to eat on the bus...or anywhere for that matter, do you have to eat with your mouth wide open? I can smell what you are eating...do I really have to see the partially digested food in your mouth? Yuck!

7- *YAWNNN*

Yup, like anyone else, if the bus is empty, I put my backpack on the seat beside me. However, once it starts to get even slightly full, I remove my back, not waiting for someone to look me dead in the eye before I subsequently ROLL my eyes and slowly pick up my bag. There was a lady on the subway today who had her leg stretched across two chairs as she sat in one. So, in total, she was occupying three chairs. It wasn't busy on the bus at first, but after a few subway stops, it was to a point where the subway got considerably busy. Nobody asked her to move because she looked slightly older (maybe mid-late 60s). She had a cane as well, so I kind thought that her leg was hurting her. But when it was her subway stop, she popped out of her seat like a heated popcorn kernal and skipped off on her way. Really??

8- "GIVE ME MONEY"

There are a number of people who hang around the subway and ask for money. I am happy to spare some change if I have any in my pocket. But there is one scary looking guy who gets in your face (he doesn't speak english) and he says "GIVE ME MONEY" then starts motioning to his mouth as though he wants money to eat. He's really quite scary and he gets right in your face! He scares me and I am afraid to give him money to be honest.

Ok so I know I sound like a complete and total whiner, but I know there are plenty of you out there who feel the same! What are some of your pet peeves when you're out and about in your city?

The week that I prayed would end is finally over. I'm not sure why I'm so excited that it's over, as I have to work tomorrow and try to finish two assignments and study for an economics test! Then, the week after next I have to worry about 2 more tests - English and Training & Development. I wrote my Recruitment and Selection test today. I'm pretty happy with the test I think. The prof gave everyone a review sheet, basically telling us everything that we should study. Boy, was that study sheet ever helpful. There were so many possible things to remember in just three chapters...it would have driven me crazy. I hope I did well...but I feel like I did. Some of the multiple choice was tricky. Don't you hate those "All of the above" questions? There were a few tricks in some of them and I am sure that some people will get caught with some of them.

I am looking forward to hitting the hay right after this post. The sooner I go to sleep, the sooner tomorow will come, the sooner it'll be time to go to sleep again, therefore allowing me to sleep in on Sunday! Hehe.

Monday is thanksgiving (here in Canada). I'm working from 8-4. I know, I know...it's thanksgiving! But who could give up double time and a half?? I'm glad I get to work during the day and not in the evening like some others have to. But then again, not everyone celebrates thanksgiving so it probably isn't a big deal for them.

Well, that's all for now. Let's hit the hay, get some decent rest, and head off to work tomorrow! I'm actually kinda looking forward to working tomorrow as my manager is working tomorrow and we sit right next to each other. She's a nice lady. :)

I'm feeling even better than I was before, but still super tired and rundown. This change in weather (wet, soggy, etc.) is really hard for everyone to deal with health wise...nevermind the immune compromised. A lack of sleep due to studying doesn't exactly make the situation any easier either!



I've written a few tests over the past few days, and there are more to come. So far I've written a quiz in my training and development class. I wasn't too pleased with my mark-I got 22/30, or 73%. I hate it when I write a test, get it back....and then realize my silly mistakes. Myself and two other people did a group assignment for that class as well for which we got 77%. Not exactly thrilled with that either.



Today I did my online managerial accounting test. It was a multiple choice test worth 30% of our final mark! I walked into that test with my knees shaking. I managed to bang out a 26/30, 87%, so I was pleased with that, considering the fact that I felt like I had so much to remember and couldn't seem to remember anything when I tried. It all kind of came back to me when I got into the test. I'm glad I did well, as the median mark for the class was under 50%! Yikers! I hope I continue to do well in my other classes.


I have a test worth 15% in recruitment and selection on Friday. I think I'll do really well in that...I hope! Then, the following week I have an economics test. I really need to study hard for that!

Speaking of studying hard, I must go now. I have to study for a few hours, set up my machine, and dialyse!

Sorry for my lack of posting these days. I know how unsettling it can feel when a lupus/dialysis blogger posts about not feeling well...then neglecting to post for several days.

The truth is that I am still feeling slightly unwell. I'm also quite busy with school. In fact, this will, unfortunately, be a short post as I have an accounting exam to study for...and exam that is worth 30%! (Wowzers).

Thank you for those who sent me messages/comments to check up on how I was. I have the best virtual friends ever!

I went to work on Wednesday the 23rd and felt great. I had a great day at work, in fact. My co-workers all seemed to make me smile today-even moreso than they usually do. Roses had been sold a week before to raise money for breast cancer. I took the opportunity to purchase some roses for 3 of my coworkers.

One of them was a co-worker who sits right across from me. She's on my team. I've mentioned her before. Shockingly, we both have Lupus. Weird, huh? I just had to buy her a rose. I bought her a rose now only because she's a wonderfully sweet person, but because she is strong and a fighter!

After work, my father came and picked me up and we headed home. Nothing was out of the ordinary.

That night, I connected myself to my machine...and went to sleep.

I woke up the next day feeling horrible. My stomach had this dull feeling of pain that simply would not subside. I woke up about 3 hours before I was due to disconnect because I had to use the washroom. I turned my light on, got my saline and recirculator ready...then the urge left me. So, I went back to sleep.

When the END UF alarm woke me up 3 hours later...I felt horrible. I disconnected and gave myself plenty of saline. After I had finished doing all that I had to do, I made myself some tea and toast, took my meds, then went back to bed. I also took some gravol as well. I figured that I could sleep and rest until about 1pm, as I wouldn't really need to leave home until about 2pm. I set my alarm, then fell asleep.

I woke up to the sound of my cell phone alarm charming. I decided immediately that I wouldn't be going anywhere. I felt awful. The simple act of walking from my bed to the washroom, about 2 steps, felt terrible. My laptop was at the foot of my bed, so I opened it up and emailed my professor. I told her that I couldn't make it to class. She promptly emailed me back and told me to get well. She also directed me to the slides that she had posted. I was happy she responded so quickly.

I knew that if I just got some rest I'd be ok for school tomorrow. I have Recruitment and Selection class on Fridays. I didn't want to miss that! Oh, but my stomach had other plans. I woke up on Friday morning feeling just as awful. I didn't have the luxury of sleeping in a bit and hoping to feel better as class starts at 11am. I sent a text message to some of my classmates to inform them that I wouldn't be in class.

The next day (yesterday) was Saturday. I had to call in sick. I felt terrible. There was no way I could sit at a desk for 8 hours. The only way I could do that is with frequent "lie down" breaks, and that simply wouldn't suffice as it wouldn't be my own bed. I felt worried. Was I getting "sick" sick? This simply isn't an option for me...I have so many other things to do! I spent the better part of Saturday in bed. I'm glad my Mommy was around to take care of me. So I rested. I did a bit of homework, but mostly rested. I have a group assignment due on Tuesday, so my 2 group members got together at my house and we worked on our project. I have to put it together today then post it on google docs so that they can see it.

I'm feeling a bit better today. I'm hoping I'll feel even better tomorrow, as tomorrow is my long day: work in the morning, school in the evening. I'll keep my fingers crossed...I hope you will too.

This will be a relatively quick posted. I decided to stay home on a Friday night instead of meet up with my friends for dancing for a few reasons.

Firstly, I have a test in my Training and Development class on Tuesday and I definitely want to study a bit. Also...salsa dancing with achy joints?? Mmm...maybe not.


The dialysis unit in Florida faxed my home hemo unit the other day. It was a contract for me to sign and send back to them, agreeing to make payment for the amount listed on the contract. My father obtained the fax for me and nearly fell out of his police boots when he read it. It had stated that the cost per dialysis would be $650 per session. GEEZ! I promptly spoke to the unit that I planned to visit to discuss our previous discussion about cost. She told me that since I was a repeat visitor, I could pay the same price that I paid the first time, which was exactly $200usd per session. I mean...that's still a lot of money! But at least it isn't three and a half TIMES the amount! It strikes me as off that the price went up so dramatically. It was only what, December 2007 when my father and I went to Florida? How did the price go up so dramatically in such a short amount of time?

The unit confirmed that yes, all I had to pay was $200 per session. Another contract would be faxed to me, since the actual dialysis unit that I'll be attending and the place that I'll be dialyzing are two different places.

The contract also stated that doctor's fees are billed separately. The last time, I found myself paying approximately $185usd to have a doctor poke my ankles, take my blood pressure, and ask me silly questions for a total (and I kid you not) of 6 minutes. I waited and waited, wasting precious time during my 7 day vacation, to see a doctor for 6 minutes and pay almost $200. Their rule is if you plan to dialyze more than once in their clinic, the doctor's visit is mandatory. I am putting my foot down this time. The first time, I was not a home dialyzor. I was not independant and in control of my dialysis. This time, I am. I don't need a doctor to check my blood pressure. I don't need a doctor to ask me silly questions. To be honest, I didn't need it THEN either, considering the fact that they make my own doctor fill out a document the width of a phonebook before they allowed me to dialyze there. If they were going to disregard all that my very knowledgable doctor had to say and were going to have their own doctor check me out anyways...why waste my own doctor's time?

This time, I'm absolutely refusing. Flat out.

I can't wait to hear the arguements and disagreements that ensue because of my absolute refusal to give in to paying silly amounts of money for an unneeded doctor's consult.

First of all, before I even get into this entry, I thought I'd mention a joke a friend and I share. I was chatting with her on MSN when I heard the ice cream truck outside. I (obviously) went outside to grab my a nice vanilla cone. I saw a kid who had no ice cream and had no money to pay for one. Well, he had a little bit of money, but not enough for ice cream. So, I did the right thing: I bought him ice cream. The young man very politely said "thank you, lady". It was cute.

I came back to my room and told my friend what had happened. She told me that I was so nice and said that I was an "angle". An ANGLE? We both thought it was so hilarious. She went on to call me an obtuse angle for the rest of the semester. Haha.

Anyhow, back to a more serious story I forgot to write about yesterday. Do you believe in angels? I have never masked the fact that I am a Christian and I do believe in God. Whether you believe in God or not, I bet we all have days where we're just like...man...why me?

I was almost having one of those days yesterday. As I mentioned yesterday... I just haven't been having a couple of weeks. Stomach pain has subsided, but now my left foot hurts a lot.

Yesterday I was at the subway on the escalator. I would usually walk or run up the escalator, but the pain in my foot would not allow. As I stood there, a man walked by me and gave me a friendly "howdy". I responded by saying hello, and he continued to walk past me and up the stairs of the escalator. As I neared the top of the escalator, I noticed the same man standing at the top. He said to me "You are blessed. Did you know that? Did you know that you are blessed?" I was a bit surprised, but I responded that I did know. He said "ok, good...good. You are blessed". He said goodbye to me and walked in the opposite direction that I was going in.

I went outside to wait for the bus. After about 5 minutes, the same gentleman came back and stood in front of me.

"Are you a Christian?" he asked. I hesitated for only a millisecond before responding affirmatively. I was afraid that he was going to preach to me, or he was going to ask me for something. He then went on to say "I want you to know that you can do anything. Don't let anyone tell you that you can't achieve anything you want. God is on your side, you can do anything, and you are blessed. Okay?"

"Ok" I said. I thanked him. God Bless You, he said. Then he went back in the direction that he had originally walked when we had first crossed paths a few moments earlier.

It was all kind of strange as it seemed to be just the boost I needed at that time. It was like he was specifically put there to lift my spirits and remind me that God was on my side. He only talked to me...he didn't go to anyone else, talk to anyone else, look at anyone else. Just me. The subway station was pretty full.

It definitely reminded me to keep my faith up. It reminded me that I need to keep plugging on as I have been...and that I can do anything I really put my mind to.

When I told someone else about this story, they suggested that perhaps this was an Angel, sent specifically to me...to remind me to keep my faith up. It's strange how he not only stopped at the top of the escalator to talk to me...but he came back into the subway station after leaving...just to remind me further that I can do anything.

Coincidence?

I think not.

1 week down...only 14 to go??!

I'm happy that i made it through my first week of school-but literally, it was just barely. As I mentioned previously, my stomach was hurting so badly on Wednesday. My joints hurt that day. My joints don't hurt much today, but my right foot is hurting (again). Will I ever rid myself of this terrible cycle of fracturing and re-fracturing this stupid foot??

All of my books have finally arrived, so I'm good and ready to tackle this semester. This is a crucial semester as many of my courses are directly related to me obtaining my CHRP (certified human resources professional) certification. The main criterion for these courses is that I must get a 70% average, with no one mark lower than 65%. I'm definitely doing that now as I haven't had any courses lower than a B, but that trend definitely needs to continue for this semester and also the next one.

I think I will start reading my economics textbook. It's an online course so I need to be careful not to fall behind...or else there's no turning back! Some online courses will potentially allow you to post all of your answers at the very last minute. Not this course. There are weekly modules that need to be completed by 11:59pm on Wednesdays.

So, off to make some notes for economics!

Yes, my title pretty much confirms how I felt yesterday... and to some degree, today as well. Yesterday was just an awful day. My joints were killing me and I could hardly walk. My stomach felt like...it felt like there was something in my stomach pushing it outwards. It was a constant pressure, like someone leaning against a wall. It hurt to touch.

My father was nice enough to bring me a hot water bottle before he went off to work. It helped. I walked around my house like a robot with the stiffness and pain in my joints. I felt like if I could just walk around a little bit more...my joint stiffness would lessen. But the catch- it hurt to walk.

Today I have to go to school and see my disability coordinator. She will give me a package to provide to all of my professors to basically outline all of my needed accommodations.

I should get ready as I should really be leaving my house in about half an hour. I hope I feel better!

My school bag is packed and I'm all ready for another fantastic semester starting tomorrow. I've done my schedule in such a way that I'll only have one class per day. Tomorrow, it's Training and Development. I will admit, the break seemed pretty short even thought it was 3 weeks long. My intent was to finish school in 2 years instead of 3 by going to school in all semesters without taking any time off, but I am unsure if i'll be able to do that. I definitely want to finish school sooner than later so that I may move to a position that utilizes said skills, but I also don't want to go nuts! I think my answer to this is to perhaps go to school part time next summer, maybe 2 or 3 classes. We'll see!

Yesterday was a beautiful day, so my friend Carmela and I went to the park. I would consider her to be quite the photographer, and I'm sure many others would agree also. I have always wanted a new picture of myself that I could put on my blog. I wanted something that somehow represented both my blog and myself.

The idea of me taking a picture with my fistula showing immediately came to mind. I wanted to just kind of be like...yes, here I am, this is me and this is my fistula. I deal with it so you should too. I think the picture came out great! The picture is actually in the top left margin of my blog, but I wanted to post it again right here in this entry, a little bigger than the picture on the left, so you can get a real feel for Carmela's wonderful work.

Thanks Carm!

Please excuse my lack of posting. It has been a busy week for me.

On Sunday afternoon (last sunday), right after work, myself, my mom and my sis went to Buffalo for 2 nights. We shopped til we dropped! It was great fun as my mom usually works throughout the week and my sister is usually busy with work and school. It just so happened that we were all free of other commitments for those few days, so we decided to go to Buffalo.

The hotel was great, the shopping was great, and I had a great time...mostly just hanging out with "the ladies".

We went to the cheesecake factory for dinner on one night. Who knew the cheesecake factory serves things other than cheesecake? I got an obscenely large hamburger while my sister and mom both got chicken burgers. Man, these burgers were big enough to feed all three of us had we just placed one order. I ate but didn't stuff myself. I had no interest in making myself ill like I was the night before from our take our mission to olive garden!

Anyhow, I just finished phase one of dialysis supplies room re-organization, so I'm pretty tired. I'm going to rest. I will post pictures of the reorganization when I'm done...hmm...maybe I should have taken before pictures....oh well.

This one is a lot more...well...take a look.


http://www.thestar.com/article/685786

I thought I'd just post this as it is something that irritates me.

I've never been a person who has asked for handouts, even with having a chronic illness. In grade 9, I made my Dad drive me to school so I can write an exam, inspite of the fact that I was terribly ill. My teachers told me not to worry about it, but I didn't want any handouts. I wrote my test, went to my father's waiting car, then went home to continue being sick.

I am definitely not the person who wants handouts. I work hard in everything that I do, including my work and my school. What upsets me is when I see people taking what I feel is the easy way out and taking advantage of things.

I hate hearing or seeing people in my class cheating on their tests. They cheat and end up with the same marks that I got by studying for hours. Are these the same people who will compete with me when I'm in the job market for a position in my field? I know, I know...people who cheat are ultimately cheating themselves. But geez...I'm still irritated.

I go to bed at night not knowing how I'll feel in the morning. If I do feel unwell, I usually fight and struggle my way through it and do what I have to do. But sometimes...it's just too much and I cannot go to work. Do other people have that same work ethic? Yes! My co-workers are all amazing and they work so hard. In fact, one of my co-workers and team members also suffers from Lupus. She is doing amazingly well. But then, like anything else, there are always going to be a select few people who do not have that same work ethic. As someone who works very had but sometimes has to call in sick because I'm (surprise!) SICK, it is highly offensive.

Oh well. I love the fact that my employer is so understanding of all that I go through...but words can never really decribe to others what I go through. I often wish I could just walk people through a day in my shoes, then perhaps they'd have more of an idea and an appreciation of how hard I work and how determined I am.

Most of today was spent at a funeral.

The funeral was for my friend's father. My friend's father and my father were also good friends, as was several other people in our community. In fact, my friend and I became friends because of the friendship between her parents and my parents.

My friend is only 1 year old than I am, and she has 2 younger brothers, perhaps only a couple of years younger than she is. When we were at the funeral, my friend and her two brothers each took time to speak about their father. It was so difficult to watch. I wiped tears from my eyes, especially when my friend got up to speak. She broke down several times during her speech. I selfishly thought of myself and how I would feel if my own father passed away.

While I may be 27 years old, I still feel like a little girl around my father. He still calls me "Baby", the way he did since as far back as I can remember. I squeeze him tight as many times as I can...just to show him how much I love him. He is everything to our family...and he also means so much to others as well. The same with my mother. My mother and I are like side kicks...like best friends. I love hanging out with her, shopping with her, etc...just like I did when I was little. I am a little girl in a 27 year old's body.

The hardest part was when my friend's father was actually being lowered into the ground. The cries and yells of my friend's mother were heart shattering. I stood behind my friend and held her in my arms and supported her as I could feel her knees getting weak. It's almost finalized once that final lowering takes place.


I remember a few months ago I had a dream. It was a disturbing dream that left me in my bed, by myself, sobbing. I too dreamt that my father had passed away. Shockingly, he had passed away the very same way that my friend's father had passed away - due to heart failure.

I told my father about my terrible dream, barely able to speak the words without breaking down. He told me that it was ok to be upset. He also told me that sometimes when we have dreams and see people doing things in that dream...it isn't actually that person doing it...it's someone else. So for example, even though my dream seemed to imply that my father had a heart attack, maybe it was actually someone else.

Another thing my father told me after I told him about my dream really stuck in my head. After much discussion, he said the following: Everyone wants to go to heaven...and yet everyone is afraid to die.

So true.

Life is so precious. You never know what the day will hold when you wake up in the morning. When you wake up, you have no idea that THIS will be the last time I'll ever brush my teeth. THIS will be the last time I'll brush my hair. THIS will be the last time I hug and kiss my loved ones.

If there is anybody out there who is reading this and is feuding with a loved one...please...really think about what you're angry about and if it is really worth it. I live each day this way, which is why I hang out with my parents as much as I can. This is why I hug and kiss and squeeze my parents as much as I can. This is why I text/email/msn my sister, even when she's only 3 doors away. This is why I text my brother just to say "what's up."

Love your loved ones. Don't "coulda, shoulda woulda" when it's too late.

<3

In case you missed my last/previous post, here we go again! haha
http://www.theglobeandmail.com/life/at-home-dialysis-touted-as-the-next-best-thing/article1259490/

One of my doctors, Dr. Chan. did a study to show that doing nocturnal (the prescribed amount) dialysis is as good as receiving a kidney transplant from a deceased donor.

Studies still in fact show that receiving a kidney from a living donor will ultimately give the best result, but the fact that home hemo and deceased donor transplants are on par is amazing news!

For all of us home dialyzers out there, I'm sure this is great news, but it just reconfirms how we've already felt in terms 0f being on conventional in centre dialysis vs. home hemo.

On Tuesday evening and for the better part of Wednesday, I talked to different newspaper media outlets about this news. I also discussed my experiences in terms of how I ended up on dialysis, how I decided to try home dialysis, etc. I spoke to about 4 different news papers, but only 1 had a spiffy picture of me that was taken yesterday (I am yet to check actual newspapers...I'll go pick them up a little bit later).

Here is the article from the globe and mail, complete with spiffy dialysis picture. Tell me what you think of the article and its findings:

http://www.theglobeandmail.com/life/at-home-dialysis-touted-as-the-next-best-thing/article1259490/


On Wednesday, while my doctor spoke to the different media outlets, I was just amazed. I mean, obviously he's a smart guy, but listening to how he answered their questions with such finesse was so cool. Based on the one sided conversation that I heard, I knew that they were asking him a lot of questions concerning transplants. I think they were making reference to whether people get "priority" over a deceased donor kidney; perhaps the sickest person gets the organ first. Dr. Chan explained that there is a transplant list which in some cases (like mine) can cause me to be on the list for upwards of 10 years. In other situations, for example, liver transplants, lungs, heart, etc., those people are often given such organs based on need/priority rather than how long they've been on a "list". He also explained that there is not any sort of long term therapy to sustain life for those other organs as there is for kidneys.

He was also throwing out statistics like crazy! Soo amazing to listen to him speak. But when he speaks to you directly, he doesn't dumb things down at all, but he speaks to you in a way that is easily understood. Just sitting there and listening to him speak to the reporters taught me a lot. He spoke about how much kidney function (10-15%) is considered too little, therefore needing intervention (dialysis). He spoke about tons of things. There were some pictures of myself and Dr. Chan, but I didn't see any online. I hope I can find some when I go and pick up the newspapers from the local 7-eleven.

Anyhow, I'll be needing to head off to the local shoppers drugmart to pick up some prescriptions so I might as well pick up the newspapers that I need at the same time!

Final marks are in...






And this is my GPA




aaaand my total GPA is above 3.5...so I'm on the Deans list again! hurray!

Yup, it'e been very hot around these here parts for the past few days. My house has the unfortunate flaw of not having a properly functioning air conditioning system. Well, the air con works just fine...but the way my house is built (the "guts" of the house, that is) doesn't allow for proper flow of the air con, and therefore the whole house is hot. I have a fan on full blast pointing at me right now.

I'm so glad to be sitting here on a tuesday, in bed, at 10am, just relaxing. I haven't seen a Tuesday outside of school in quite some time.

Marks for my summer semester are coming out today! I can't wait. I hope I manage to squeeze out another Dean's list showing this semester with a GPA of at least 3.5. I think I can do it....but we'll see! I'll post again when the marks go up.

Nobody could say anything to me when I was in grade 8 and younger. I was tough as nails. An admitted Daddy's girl, yes, but still tough as nails.

I had my fair share of those petty school yard disputes that we have as youngsters that often have us running home to our mothers. Not me though. I was tough as nails. I remember getting into a fight with a boy. I was in grade 3 or 4. I can't remember the exact situation, but I do remember he and I getting into a physical fight. I grabbed him by the collar and threw him to the ground. He got up, charged at me, and punched me in the face. I didn't cry. I didn't flinch. Before the fight could progress, teachers had already intervened. I was lucky to have dodged suspension. But, the point is, I was tough as nails.

My toughness faded away in November of 1996. I was forced to adopt a whole new type of toughness. I was never the same.

I went through so many things and I experienced so many things at that time. I cried often. I probably cried more during that time than I had in my entire life.

It was soon after that I realized how upset I'd get at things, or how easy it was for me to cry. I usually wouldn't cry at something I saw on TV or in a movie. The first movie I remember crying at was The Lion King. Boy did I ever cry like a baby.

Today was a rough day for me at work. I was faced with a lot of difficult situations. 3 hours into my shift I was literally, LITERALLY on the brink of tears. At that point, I was like a canon, ready to explode if jolted in any way, shape, or form. I got up from my desk walked around for a bit. I spoke to one of my co-workers and team members named Leela. She cheered me up soo much. In fact, she cheered me up more than she probably realizes.

I was glad when I looked at the clock on my computer and realized that it was now the end of the day for me. I was so visibly shaken by my day that my mother realized it as soon as she saw me. My father realized it too...because he immediately drove us to the 7-eleven for slurpees. Slurpees cheer me up also.

There was a point in time where anyone could say pretty much anything to me and I would not flinch. Being emotional is good...it shows that you are human. But in a way, I wish I could find a happy medium between the two extremes. There isn't a job out there where there are absolutely no bad days.

Or, if there is, let me know...

A huge weight has been lifted from my chest. Exams are over...and I couldn't be happier!

My accounting test was today. Man oh man was it ever difficult. I made the Dean's list last semester... I dunno about this semester! Well, I already know I got an A+ in my HR computer's class. Grades are not due for teachers until Tuesday (after this weekend) but my computer teacher is so on the ball that he put them up already. I'm also expecting at LEAST an A in
Math and in Project Management. The two courses I'm scared about are Human Resources II and Accounting.

For accounting, I think that if I was more focused I could feel more confident about my final mark. I went into the test with an A-. The last test was so difficult for me. It was a multiple choice test and the first, like, 10 questions...I got "B"! Was he trying to trick us with that? Oh well. As for HR, I must say, I've been having problems with my prof for that class.

She'd show up to class late...and end class early. In all, we'd lost about an hour of class a day on average. She would ask super obscure questions on the test...questions that even the most seasoned HR professional working in that SPECIFIC FIELD (i.e. occupational health and safety) would have trouble answering. On my individual assignment that I handed in, she gave me an 11/15. I was definitely not content with that, so I went through the entire paper looking for her comments as to why I received the mark that I did. Nothing. No comments.

I questioned her. She pulled out a sheet of paper, apparently the marking scheme for my paper. She told me that I didn't source this and that. I showed her where I did, in fact, source the exact thing that she accused me of not sourcing. Then she told me that I didn't source my chart. I showed her my chart (all sources clearly in tact). "oh". she said. Ok, well I'll remark your paper.

The next week I went to class. I saw my paper on the table. I opened it up to see my new mark. Hmm, interesting. 11/15. I questioned her. She told me that she forgot why the paper was still there. She'd mark it again. The next week (the week before the exam). Still not marked. Also left unmarked was my quiz that I wrote 2 weeks before. I expressed my dissatisfaction with the situation. I was going into a final with NO idea of my marks. She told me that she had been busy marking other stuff. I told her that I was at a distinct disadvantage because of this. I write my tests in the test centre. I took her 6 weeks to finally pick it up from the test centre and mark it. She had various reasons for this. A few times she couldn't even remember if she had picked it up or not. Another time she told me that she went to pick it up and it was closed. At 10am. (they're definitely open from 8am-6pm). It has just been a stressful semester in her class.

I'm just hoping that I get at least a B in both classes. In order to write my CHRP (Certified Human Resources Professional) test, I need to have an average of 70% in my key HR classes (including Accounting), with one no mark lower than 65%. I'm definitely hoping for anything above a B in these classes as I do not want to have to take anything over again, nor do I want to get a C+ and feel stressed about ensuring that the rest of my key HR courses are up to snuff!

Oh well, what's done is done and all I can do is wait until the marks are posted. Wish me luck..