Sunday, March 30, 2008

Procrastinating is not a good thing

I'm at a point where I'm beginning to feel SO overwhelmed.

I have so many things going on right now. Do you ever have so many things going on and you just wish that instead of today being today, "today" was 3 weeks from now, because if today was 3 weeks from now that would mean all of the stuff you need to do would be done and overwith?

I'm pretty sure that I'm going to have to get an extension on my online finite course. The end date of that course is supposed to be April 23rd, as in, I'm supposed to write the final exam on or before then. I don't think that's going to happen. According to the course's website, I'm allowed to request a course extension...but that would cost me money. Boo-urns.

Sometimes I feel like a prisoner in my own body. I just don't feel like doing stuff sometimes. I'm just soo tired, and even unmotivated sometimes. Like honestly, I'm not a big fan of math. This course is like a road block that is shielding me from my ultimate goal, which is to officially get into my HR program. I wish I could just get into the program, do what I have to do, finish school, and keep it moving. Obviously I hope that my dream will come closer to reality now that I'm almost in place to start doing dialysis at home. I do fear the numerous warnings from others telling me that I likely won't be able to sleep for the next month or so....oh man...the next like 8 weeks is gonna be rough...

Well, some happy news: I started my intermediate cake decorating class yesterday. I worked in the morning from 7:30am to 12:30pm. My mom picked me up and shuttled me right on over to my class which started at 1:30pm and continued to 4:30pm. This class is a lot smaller than my introduction to cake decorating class. My intro class had about 16-19 people, and this class had 9 people.

For this intermediate cake decor class, we're making a dummy cake (not a real cake, it's styrofoam). Yesterday, we kneaded the colour into our fondant. The fondant that was given to us was ready made fondant that can be purchased from the school itself. It was white, but we wanted it to be an ivory colour, so some colour was added to the fondant and we kneaded the colour in. After that, we rolled our fondant out so that we could use the fondant to cover our square piece of styrofoam. Prior to covering the styrofoam with the fondant, we covered the styrofoam with piping gel so that the fondant would adhere to it. After covering the sytrofoam and triming the edges, we rolled out the remaining fondant to cover our cake board. The cake board was also covered with piping gel. Covering the cake board with fondant gives the illusion of a bigger cake.

Now that both the cake board and the styrofoam were covered, we used a bit of royal icing on the cake board to stick the styrofoam to to the cake board. Next, we had to mark our cake. We had to measure the midway point of all four corners of the cake, then measure half an inch intervals around the whole cake. We measured by putting a small hole with a pick at the bottom of the cake. Then, at each half an inch interval, we had to mark the sides of our cakes. I'm assuming its because we're going to do some string work next week and we have to make these marks to show where we're going to attach the it's even. After that, we piped some royal icing shells along the bottom of the cake where the cake/styrofoam and cake board met. This make it look a lot neater. Lastly, we made pink royal icing drop flowers on parchment paper. We'll be using those probably next week. Lora, our instructor (same instructor from introduction course! :) ) told us to pack our patience for next class as we were going to be doing string work. I hope it goes well! I plan on taking some pictures next week to post. After we cleaned up, Lora did a demonstration. She showed us how to make fondant from scratch. It was pretty easy and fast....about 10 minutes. But after making it you have to rest it for about 24 hours. The fondant was REALLY good. Delicious, in fact.

While I was making my drop flowers, one of the ladys who works at the school came up beside me and whispered something in my ear. She said "I nearly had a heart attack. A police officer came in and told me that he was here to arrest you!" I started laughing immediately. That police officer was my father. He's always causing trouble everywhere I go! I turned around and saw that smiling face belonging to my father. What a character.

All of that being said, all I had to eat since that morning was a donut and a cup of tea. I also had a can of coke 2 hours into my shift. At cake decorating class, luckily Lora brought some cake. I scarfed down 2 small pieces of cake. Most delicious cake I've ever eaten....or probably just really good cake that tasted even better because I was starving.

I was exhausted afterwards. When I got home, I turned my dialysis machine on to give it a rinse. Everything went well. I got one "no water" alarm, but it quickly resolved itself. I hope it doesn't give me many problems.

After that, my mom and I went to pick my dad up from work. When we returned home, I ate my dinner and pretty much passed out. I work up for a few minutes here and there, but pretty much slept from 10pm to 7am. In between, I watched a bit of the movie SWAT on tv. I also observed Earth Hour from 8pm-9pm. I was proud that my mother and father participated as well.

Now, I'm thirsty and a bit tired again. I still have much to do today. I have to sort out a couple of things where my taxes are concerned, find my math textbook and notebook to do some work, sort out all of my dialysis supplies which are currently sitting in sealed boxes in my living room, clean out the spare bedroom to make space to put all of these boxes....bah!

Wish me luck :...(

Friday, March 28, 2008

My Machine Clotted! :-(

Today definitely wasn't a great dialysis day. I set my machine up as usual and everything was fine. I cannulated my buttonholes...and everything was fine. I quickly scanned my circuit for air and there was none, so I attached my arterial line to my needle and started the pump. The blood went through the tubing. All of a sudden, I kept on getting alarms. It was my arterial pressure. What could be wrong with my pressure? I cannulated properly and I knew for a fact that the needle was in the right place....what the heck is going on?

I tried overriding the alarms several times but they just kept coming back. I called Shoelee (don't know how to spell her name...she's a nurse) to help me. At first she suspected that it was my needle so she tried moving it to no avail. I myself was confident that it wasn't my needle as I know I got it in the right place. All the while, my blood was just sitting in the tubing doing nothing. After 5 minutes Shoelee decided that we should recirculate the blood that was already in the circuit so that it didn't clot. When we pulled the troublesome needle out and pushed saline through it, a large clot came out of the tip. How the heck did I get a clot in my needle? I flushed it with saline more than once just like I always do...?

Anyhow, I held the site with gauze until it stopped bleeding, and then I put a bandaid on it. I cannulated another hole. I had to reposition the needle twice but it went in. When I tried to reconnect again....alarms. Great....because we spent forever trying to fix my needle instead of flushing the circuit with saline and recirculating right away... my entire circuit was clotted. Crap!

So now I had to do "hemofilter management", which essentially is just stripping all of the tubing from the machine and starting from scratch. I waved goodbye to the tubing as I put it into the garbage can, as those tubes still held a good amount of my blood in them. And, being anemic....losing blood is not on my top ten list of things I'd like to do.

So both Rose and Shoelee where there to help me and guide me and we striped the circuit and replaced the tubing. It's a major pain in the butt. The pump won't have to crank it yourself like a jack-in-the-box in order to get the clotted tubing out. The machine alarms the entire time and you can't silence it (not something I'd be impressed with if this happened at home). When the lines are being primed with saline, you have to watch the bag yourself until 700ml has been reached. During a normal setup, when 700ml has been reached, the pump turns off itself. This time you have to watch or else the bag will empty itself, start sucking air, then you'll have a circuit full of bubbles (not a good thing). While all of this was going on, Rose was sure to reflush my needles with saline. I'd be right pissed if after all that, my needle(s) clotted again. When I finally had the entire machine set up, I reconnected my arterial line. Another thing, the pump won't stop/alarm when it's time to connect the venous line. So I have to keep my eye on the tubes and stop the pump myself when it's time to connect the venous line. So I did that...and everything went fine.

Operation hemofilter management took us about half an hour. Much faster than it would have taken had I been doing it myself :-(

I had my gravol in a small drip bag. I ran it slowly over the course of an hour or so. I always get crazy stomach aches on dialysis. I ran it too fast though. I should have run it slower. When I had about an hour left, my stomach was killing me. I went back and forth between giving myself boluses and putting myself in minimum. I finally gave up and took myself off about 18-20 minutes early. When I returned my blood...I felt a bit better but still crummy. I sincerely hope that this stomach pain will subside once my body gets used to home hemo.

After dialysis, one of the techs came and showed me once again how to change the foreclean filter at the back of the machine. Pretty straight forward.

Remembering all of these crazy procedures is going to take some SERIOUS getting used to...

On a completely separate note, I'm watching CSI Miami. Horatio is SUCH a champ. Matched by none.

So yeah, as I've mentioned, I've been told to expect some sleepless nights. They'd better hook a girl up with some sleeping pills. I don't have time for insomnia!! Hehehe

I just re-read the above entry...dang do I sound like a dialysis nerd with all my crazy dialysis terminology or what! "hemofilter management, arterial, cannulate...ooooooooo!" LOL.

Intermediate cake decorating class starts tomorrow! Yippiee!

Thursday, March 27, 2008

Sitting on your Butt for 8 hours straight is hard work!

At around 9:30am today, I went to the hairdresser to get my hair done. Like always, getting braids in my hair is usually an all day affair. Today was no different. As I mentioned, I got there at 9:30am and got out of that chair at around 5:15pm! And that's with NO major breaks, as in, no breaks that lasted longer than 4-5 minutes. Wow! But I am very pleased with my hair. But when it's time to take these braids out...ya that's gonna be a big production in and of itself.

My ankles are still sore today. Strangely, my blood results aren't back yet. My nurse Rose thinks that the lab is probably back-logged due to Easter. But sheesh, tomorrow will make it 7 business days. How long is a Lupus test supposed to take? In the meantime, I've been using 1 codeine pill a day to keep the pain at bay (and no, people, I'm not addicted to codeine so save the intervention! LoL)

My stomach still feels funny. Some days it's fine, and other times it's not. Some days it'll be ok for some of the day, and not for other parts of the day. This just isn't normal....something's gotta be up.

Speaking of which, the results of my Gastric Emptying time test came back. Doctors were concerned that perhaps my stomach was digesting food too slowly. They say that sometimes people on dialysis have a "lazy gut". Well, lo and behold, my body has to throw a wrench into what the doctors thought they already knew but just wanted to do a test to confirm. Not only do I not have a "lazy gut", but I have an....hmm....I guess you can athletic one? My gut actually digests food faster than your average bear. When Dr. Chan told me this, I was like.." what?" He told me that he would speak to a gastroenterolgist and get their opinion of the test results and see what they have to say. So, more waiting I guess.

My last dialysis training day will be this coming Monday. I wanted Friday (tomorrow) to be the last day that I have to go there but that's not going to happen. In order for me to start dialyzing at home, my nurse Rose has to come to my house and pretty much watch me set up for the first time. Then I do a short dialysis run (2 hours). When she finds that everything is satisfactory, off she goes. Then, that same night before I go to bed, I dialyze myself while I sleep. I wanted Rose to come on Monday, but another nurse named Celine has the day off. Since Celine already has the day off, it is not feasible for Rose to take time away from the unit to come and help me. There are a lot of other people doing dialysis training and the nurses who are left would be way too stressed out.

I can't wait to be out of there. Aside from I won't have to worry about the blaring iPod of the gentleman beside me...I also be free! FREE!! But, both Dr. Richardson and Rose told me that I'll have trouble sleeping while on dialysis probably for the first month or so. But after that, I'll likely sleep much better than I have in years. On top of that....I just put brand new bedsheets and pillow cases on my bed. They have a thread count of 300. I know I've heard of bedsheets with much higher thread counts, but I don't think I've ever slept on a bed with bedsheets that have a "thread count". It's so luxurious and I've slept like a baby for the past 2 nights. Hopefully my luxurious sheets will get me through the next month of what I hope will not be sleepless nights.

Tuesday, March 25, 2008

Another Poopy Day

Today was another one of those days. Well actually, for the past maybe week or so, I've been experiencing pain in both of my ankles when I walk. I know Lupus is a disease that can involve the joints i.e. rhumatoid arthritis, however I've never really experienced such symptoms. I do have avascular necrosis in my left hip and right knee, however that can be closer equated to prednisone as opposed to Lupus specifically. The only other time I remember feeling pain in my joints was a few years ago when I got an infection. Septic Arthritis. I spoke about it in another entry. That entry is here.

On that occasion, the infection in my knee had gotten so bad that I couldn't even walk anymore. Luckily it didn't get into my bloodstream and it didn't damage the cartilage in my knee. By the time I went to emergency and was seen, it was very apparent that I had some sort of infection. I was freezing and wanting to be covered up with multiple warm blankets, yet I was sweating like crazy. I was shivering and my temperature was through the roof. I remember lying there in pain, and I could feel pain just pulsing through my joints, one joint at a time. For example, first the joints for all of my fingers on both hands would throb for about 2 seconds. Then, my wrists. Then, my elbows. Then, my hips. Then, my knees. It continued like that all the way down my body until it teached the joints in all of my toes. It wasn't an excruciating pain, but it was definitely pain. At the same time, I've experienced varying degrees of pain in my life, so whenever I say something wasn't that painful, it's comparitively speaking. For someone else, that just may have been excruciating.

That being said, as soon as that pain reached my toes, as if on queue, a nurse walked in with a syringe full of morphine. Not diluting it in a saline bag, the nurse injected the morphine right into the IV that was in my hand. I'm not sure how safe that is, but the good news is that I felt the effects of the morphine instantly...and I never experienced that kind of joint pain again.

My fear is that this is some sort of Lupus flare. I hope it isn' I simply don't have time for a Lupus flare right now. I don't have time to be sick. At any rate, I'm still waiting for those blood results to come back to see if I do have active Lupus. The blood tests were taking last week wednesday, and as of yesterday, the results were still pending. They're taking forever.

I went to work today as usual. I knew I wasn't feeling stomach was kinda iffy. But I didn't want to miss work again as I missed work on the 11th. I wanted to try...and that's just what I did. I got out of bed, took some pain pills, and off to work I went.

When I got to work...I just felt tired. Luckily I'd be able to just sit at my desk and not move. Wrong. From 10:30am-12:00pm, I'd have a meeting with my manager and two other people. My stomach wasn't well and I just didn't want to deal with it. However, considering the fact that I only work once a week, my manager has to schedule me whenever she can.

I got through work ok. My dad picked me up and brought me home. When I got home, I decided that I should go to a nearby store and pick up some shampoo. So I did. On the way home, I decided to stop at 7-eleven for a slurpee, so I got off of the bus one bus stop early. The walk from 7-eleven to my house is probably a 5 or 6 minute walk. When I got into the 7-eleven, I began to seriously regret getting off of the bus. I wasn't feeling well. When I got my slurpee and went to the cashier to pay, I stood there, hunched over, waiting for her to come. I paid and quickly went outside. I felt warm all over so I took my hood off. I sat down on the ledge of the building and put my head down. I took some deep breaths. I then decided that the faster I got home, the faster I'd be able to just lie down properly.

So I walked. I made it to the stoplight, which pretty much signifies the midway point between my house and the 7-eleven. I waited for the light to change. I was happy the light was red as it gave me time to hunch myself over again and take some deep breaths. I could feel my heart beating loudly through my thick jacket. The light changed and I quickly crossed the street. I began that final walk...the home stretch. As I walked, I reached into my pocket and got my keys. I didn't want to do that when I was at the door. That would waste more time.

I was relieved when I finally hit my street. Thankfully I live on a small street with few houses, so it wasn't a long walk once I got onto my street. When I reached the end of my driveway, I said "Thank you Jesus" out loud. I couldn't be happier to get home.

When I got inside, I dropped the bag holding my shampoo and conditioner. I got the largest bottles which made them a bit heavy. I closed the door and locked it. I didn't know if I should just leave the bottles there and get them after I rested, or if I should pick them up. I decided to pick them up. My Mom wasn't due home for a few hours, but with my luck, she'd come home early and step on my shampoo and possibly hurt herself. So I put my slurpee on a ledge just behind the door, scooped up my shampoo and conditioner, and headed for the couch. I threw myself on the couch and could feel my stomach turning. I honestly felt like I could throw up. I unzipped my boots and my jacket and removed my scarf. I went upstairs in anticipation of throwing up...but I didn't. But I did feel really hot. I tore off my work clothes and threw myself on my bed, wearing only a wife beater (or I've heard of it being called a 'boy beater' if a lady wears it) and my underwear. I felt so awful. I rolled around, back and forth, on my bed until I found a comfortable position. I took some slow deep breaths to calm my beating heart. After about 10 minutes or less....I was fine.

It's not the first time I've experienced such a thing. I know it's important for me to get back into the gym, but I'm afraid because of episodes like this. If I were to pull something like that in a gym, they'd definitely be dialing 9-11. And who could blame them?? I wouldn't know what to do either.

I guess it all goes back to whether or not this home hemodialysis thing is going to leave me feeling better. I certainly hope so. All of the equipment is in place and I'm ready to go. I just hope it makes me feel better. And again, I hope I'm not going through a flare. I have so many classes that I signed up for (ie multiple cake decorating classes and my math class which is supposed to end on April 23 and I'm no where near done). So I'll keep my fingers crossed...and continue praying.

Friday, March 21, 2008

To Buffalo for a Few Hours!

On Thursday, a few hours after my gastric emptying test, my mom, dad and I went to Buffalo. My mom had wanted to go shopping in Buffalo for a few weeks now, and since it's Easter weekend, my mom had some time off from work so we decided to go.

Luckily, I had this in mind when I went to do my gastric emptying test. Since they'd be giving me some sort of radioactive contrast, I knew that it would be detected in my body when we hit the border. That being said, when I got to my appointment, I asked them to write me a letter that I could take with me in case they asked me any questions at border patrol.

When we approached the border, my dad got the letter ready. When we reached the border patrol officer, my dad handed the officer my letter as well as the passports. He first looked at all of our passports, then opened my letter. When he read the letter, he kind of smiled and nodded. He then said "Ahh, yup. We did actually pick something up on our scanner". He instructed us to park in a nearby parking spot. We parked and entered the building. Another border patrol officer pointed that radar gun looking thing at me to pick up the substance in my body. While he was doing that, my dad was instructed to give another border patrol officer our car keys so he could search our car. The whole process took about 15 minutes or so. Though one of the guys did mention that it was good that we had the letter or else it would have taken even longer. So good for me...I guess!

Anyhow, when we got to Buffalo, we headed straight for Walden Galleria Mall. It was ok. I bought a pair of black flat shoes. They're pretty cute. My mom bought a jacket and a few other things here and there. My dad bought pumpkin seeds at a convenience store to eat on the way home LOL.

When it was time to come home, it was totally dark and we totally got lost. Eventually we found our way back to the border which was great! LOL

Man, I can't wait until my dialysis machine is set up and I can skip going to the hospital!!

Thursday, March 20, 2008

Gastric Emptying Test!

So today I did my gastric emptying test. I know, it sounds gross...but it's not what you think.

I had to fast for 6 hours before the test. That was fine considering the fact that my test was at 8:30 in the morning so all I really had to do was skip breakfast. When I got there I was seen almost right away which was great. I just had to wait for them to finish cooking my scrambled eggs.

When I went into the room, I saw a neat plate with scrambled eggs in between toasted bread. In the eggs, the put some radioactive chemical called Tc99m, which has a half-life of 6 hours. It is supposed to help them see the path the food I was about to eat is travelling as it enters my body. The speed of the food (whether slow or fast) is also an important element of this test.

When I took my first bite of my egg sandwich, I almost choked! Not because it tasted awful or anything, but because there was no salt/pepper or anything else for that matter on the eggs. The toast was also plain with nothing on it. They only gave me a quarter cup of water to choke down the dry toast and bland eggs. I ate slowly and took sips of water to get the food down.

After eating, they immediately took a picture of my stomach. I stood in betweeen to panel-typed things. The one behind me was moved closer until it touched my back. A piece of tape was placed on my upper chest. The panel in front of me had a black line down the middle. The idea was that I would line the tape up with the black line. Taking the picture took exactly 1 minute. I was told that they would take another picture every half an hour until 4 pictures had been taken. So I finished that test and I suppose now I'll just wait until they see the results. I hope this test will show why I get stomach aches/cramps all the time.

My dialysis machine came today. Woo hoo! did box upon box of supplies! Ahh! I'll take pics and post them at a later time. That's it for now!

Wednesday, March 19, 2008

Only a few more days

My ankles hurt. Both of them. I'm wondering if its Lupus related joint pain. I usually don't get joint pain aside from the avascular necrosis in my left hip and right knee. My left hip has been giving me problems lately too...especially when I'm trying to sleep. I did some Lupus blood tests today to make sure nothing is up, so I'll check up on those results either tomorrorw or the day after.

I have two sets of buttonholes now in my fistula. The second set/new set had been giving me problems when I tried to cannulate. Today, aside from a few tries when trying to put the arterial blunt needle in, everything went well. The venous went in on the first try. I'm happy and glad that it did. I'm gonna use the second set of button holes again on Friday just to make sure I'm comfortable with them.

At dialysis, there's this new guy who is probably around my age (early-mid 20s). He's forever listening to his Ipod....which is fine. However he BLASTS his music sooo loud and it's quite annoying. The other day I brought my math homework with me so I could work on it while on dialysis but that certainly didn't work. I can hear every lyric to every song he listens to. The guy must be in love with hedley because he listens to them over and over again. Every single day he has it really loud. When I ask a nurse to tell him to turn it down, he turns it down, but as soon as they leave, he turns it back up again. Today when I asked Liz, one of the nurses, to tell him to turn it down, I heard him say "Ok." to her, but he didn't even pretend to turn it down a bit. Only a few more days to go and I won't have to worry about his inconsiderate ass anymore. I don't know what this guy's problem is. I'm not taking it on Friday. I'm gonna tell him myself to turn his crap music down.

Tomorrow is my gastric emptying test. I have no idea wat to expect except for the fact that I'll be eating some eggs and toast! My mom isn't working tomorrow so she's going to be home when the dialysis techs come to deliver my dialysis machine. Good times. I honestly can't wait to be done with this. I'm glad that this new guy didn't start the same time as I did or else we'd have some serious problems.

Dr. Richardson came to see me today. It's the first time I've seen him since I've started home hemo. He's been away for quite some time. He told me that sometimes people have trouble getting to sleep when they start home hemo, but soon afterwards, they get used to it and they actually end up sleeping much better than before. I hope so.....I seriously look forward to not having stomach aches every day/dialysis, and being able to sleep comfortably and soundly through the night.

My parents also want to head off to Buffalo tomorrow to do some shopping. Tomorrow should be a busy day.

I was quite angered today when I went to type in my blog. On the left of my blog I have a tag board where people can leave comments and such. When I looked at it today, some guy named "Kevin" posted a link to his yahoo gambling site! How angry was I! You'll notice that it's not there anymore because I deleted it...but still annoying! >:-(

Tuesday, March 18, 2008

I'm Gonna Be a Sought After Cake Decorator in my spare time....and YOU can't stop me, Lupus!

After feeling down for a while (please refer to last entry) I decided to search the internet for other places that I can take cake decorating classes right here in Toronto. I'm over being upset because I can't go to the Cordon Bleu (for now...) to take more pastry classes. But I just know that I will go there or an equally fantastic pastry school sometime soon!

I found another great cake decorating school in Toronto called Bonnie Gordon's School of Cake Design. They seem to offer some cool classes that I can't find at my current cake decorating school. I plan on taking a class there called "Baking and Buttercream" as well as a class called "Modelling Chocolate". The Baking and Buttercream class will, well, teach the tricks of the trade in terms of baking good cakes, making sure it's moist, etc. I'll gain a good amount of useful receipes for cakes. The class will also teach the methods of making buttercream. From the reviews I've seen on the website, the buttercream that will be made in this class is not only delicious, but some long time cake decorators who have taken that class have actually switched their tried and true buttercream recipes after taking this class. I think it's better to take such a course now instead of getting bad habits.

The modelling chocolate course will teach how to utilize/create Belgian modeling chocolate. It will also teach how to cover cakes with it, how to create bows and ruffles, flowers, leaves, and so forth. It'll be fun to learn how to work with it.

By the end of June, I'll have finished my advanced cake decorating course and my wedding cake course too. I'm thinking of taking the intermediate wedding cakes course at Bonnie Gordon's. It's a bit expensive thou....$ GST! However if I get back to working my full hours, I might just consider doing it. The hands on experience that I gain will be good, and if I can obviously make the money back if I sell some cakes!

Below is the description for the class. I guess aside from just learning some more advanced cake decorating skills, it also offers some other stuff to:

This intermediate-level course is for individuals who have already completed Bonnie's introductory level programme and would like to further their studies in custom cake design. Skills taught in this course include how to level, dowel and assemble multi-tiered cakes, brush embroidery, pressure piping and painting on cakes. In addition to the hands-on component, this course will cover client consultations and cake tastings; the design process and translating designs into beautiful one-of-a-kind centerpieces. Other topics covered will be delivery & setup, marketing your cakes and participation in wedding shows. As a special treat, wedding and event designer Diana Shin of Bliss will join us to share her knowledge and expertise. Michael Kohn of Michael Kohn Photography will also join us to discuss photographing cakes for your cake portfolio. Students work on challenging individual cake-design projects which allow for multiple-learning and sharing opportunities within a highly creative environment
Sounds pretty sweet. We'll see. If I don't take it soon, I might take it in the fall or the winter.
Dialysis training Tomorrow.
Gastric Emptying Test on Thursday morning...+ my dialysis machine is coming, + my dialysis supplies. Wee!

Thursday, March 13, 2008

Hating Limitations

Even though I've had Lupus since I was 14 and I knew that there would be obstacles in my life beyond my control, I still opted to follow my heart after graduating from high school and go on to college and take chef training. I knew it would be difficult as I'd be on my feet all day...standing in hot kitchens, etc.

Despite the obvious barriers, that's what I loved doing. My program was only a year long and I managed to get through most of it without any hitches. The in class aspect of the course was fantastic. Chef Training at Humber was one of the best years of my life as I had so much fun doing it.

Here's a picture of the good ol' Humber Crew (except the girl on the left in the purple jacket...she's my best friend from high school. Same with the girl kneeling down..also a friend from high school. Everyone else =Humber Chef Crew)

I was pretty proud to be in the class that I was in. My class was full of talented and professional, yet humble aspiring chefs. We learned together, we laughed together...heck we even changed from our street clothes to our chef clothes in the school hallways together. I admit that when it was co-op time, the chef of the restaurant I was put in worked me pretty hard and it had a bit of a toll on me, but I'm thankful for the experience. I was also very fortunate to have been able to complete that aspect of my schooling without having to deal with any Lupus flares or dialysis. One of the best parts of Chef Training was the great Chefs we had as teachers. One of my favourite Chefs was Chef Bevan. He used to always talk about wanting to do his hair like mine LOL. Great guy. When I googled him a few days ago, I found out that he's the host of some kind of cooking reality typed show! Love him.

I've never been a quitter, but as the years went on I was beginning to realize that I was going to have to be a bit more realistic about my life. I worked in a restaurant for a couple of years. At one point I had to take some time off due to a Lupus flare. I remember my chef at the time, Ian, calling me relentlessly...asking....if not begging me to come into work because he was short staffed. The first time he called me, he asked me how I was feeling and if I could come to work that day all in the same breath. I don't blame him really...he simply didn't know or understand what I was going through.

Not really liking being the one to disappoint, I did end up going to work for a couple of hours after listening to Ian beg and cry for a few minutes. I set my boundaries right off the bat. I told him that I would stay for 4 hours only (the lunch rush and minimal prepping for the dinner rush after the fact), and that I would NOT be conned into staying over the dinner rush either. He agreed.

As expected, after the lunch rush was over, all 6 foot 5 of Ian got down on his knees and begged me to stay. I politely reminded him of our phone conversation, went downstairs, changed back into my street clothes, and went outside to my mother's waiting car. I told her what time to pick me up ahead of time so that there was absolutely no way I could be swayed into staying longer.

At any rate, after leaving the restaurant industry, I realized that I likely wouldn't be able to keep up this pace forever. Around that same time in 2004 I was lucky enough to get a job at a major bank which is where I still am. A year after that, I went back to school and planned on taking HR. Much to my chagrin, about a week before I was going to start university, I got REALLY ill....and ended up on dialysis a few months after that.

I'm still slowly but surely taking HR in university....but cooking is still a love of mine. This is why I decided to get back into it in some capacity, which is why I'm doing the cake decorating thing.

I really enjoy it and I'm really looking forward to starting the other cake decorating classes at the end of March. I was looking around on the Internet and came across the Cordon Bleu website. Oh how cool would it be to go to Ottawa or London or something and take the Patisserie course? When I start up my own cake thing, having that extra experience (and also being able to say that I went to the Cordon Bleu) would be awesome!

Then I have to bring myself back to reality. I'd have to arrange dialysis in Ottawa. I'd also have to deal with going to school full time, standing all day, and dealing with Lupus/dialysis fatigue. If there was a cordon bleu in Toronto, I'd so go...but if I go to the one in Ottawa, who's gonna help me? I'd be all alone.

Maybe one day if I get a transplant, I can do that. But stuff like this really gets me down. I can't just "pick up" and go anywhere. Everything needs to be planned ahead of time. It's a real downer.

This definitely isn't what I signed up for.

Tuesday, March 11, 2008

Called in Sick Today :-(

I had trouble falling asleep last night. I got home from dialysis yesterday and was pretty could be expected. After eating lunch, I took a nap which lasted about an hour and a half or so.

I must admit, when I woke up yesterday morning I didn't feel that great either. My stomach was just achy and rumbly...and I simply felt nauseated. The last thing I wanted to do was get up, get dressed, and head off to dialysis...but this simply just isn't a matter of choice here. I've seen many dialysis patients who will just "skip" dialysis because they have something else/better to do. Not me though. Nothing is more important than my health. You'd think that would be a pretty simply concept for pretty much everybody. I guess not.

Anyhow, after my nap, I woke up and watched TV. My stomach still didn't feel that great. My mom came home and made me some steamed potatoes for dinner. When it was time to sleep again, I started experiencing some terrible acid reflux. Probably my fault for a couple of reasons. I shouldn't have eaten something that was so spicy just before going to bed. Also, I had procrastinated on picking up my omeprazole from the pharmacy. My Mom finally picked it up for me on Sunday so I've been using it since. Perhaps it'll take a few days before these symptoms of acid reflux subside.

The combination of feeling unwell and having the acid reflux kept me awake. I kept getting up and going down to the kitchen to drink something as the burning in my throat was quite annnoying.

When I finally did get to sleep, it was after 2am. When I woke up in the morning I totally felt like I could puke. My stomach was soo rumbly and sore. I usually work on Tuesday mornings, but I opted to sit this one out. The last thing I wanted to do was go to work and feel unwell.

The electrician came to my house on Friday, so that aspect of setting my house up for dialysis is done. After speaing to the techs, the machine should be brought in sometime next week. Rose has started ordering supplies for me too. She said stuff should start coming either Monday or Tuesday. I didn't see anything come yesterday, so perhaps some stuff will come in today. I look forward to snapping shots of the spiffy machine and all of the equipment that goes with it when it gets here.

One of the techs called me today and said that he had spoken to Celine (one of the dialysis nurses) and she told him that it was ok to deliver the machine to my house either next Tuesday or Thursday. I was quite surprised by this as Celine hadn't discussed this with me at all. I know that I'm at dialysis on Mondays, Wednesdays, and Fridays, but it isn't fair to assume that I have absolutely no life on Tuesdays and Thursdays. If not for the fact that I'm unwell today, I'd be at work. Thursdys I can be home, which is what I discussed with MY nurse Rose last week (she's off this entire week for March Break). No biggie...but I just wish that Celine would have called ME and spoke to me about it as opposed to simply telling the techs to basically choose either Tuesday or Thursday to come to my house. Weird.

Anyhow, I think it would be a good idea for me to try and get some math homework done. I've been majorly procrastinating. Getting anything done with this stomach ache won't be easy, so instead of doing actual "math math" stuff, I'll work on the ISU. I have to research a famous mathematician and discuss what important things he/she has brought to the world of math basically.

Fun fun.

Wednesday, March 5, 2008

Worst Dialysis Day Ever!

Ugh, today had to have been my worst day at dialysis.

It all started when I was cannulating myself. The needles went in fine and I was just connecting myself. I connected the first tube and that was fine, but when it was time to connect the tube to my second needle, I forgot to clamp my needle. When I removed the syringe from the needle, blood started spewing all over the place. Of course I tried to clamp the needle in a panic, but the clamps are really hard to clamp sometimes....especially when it's covered in your own blood. I finally got it clamped, but the damage had already been done. Liz (one of the nurses) helped me clean up. Ugh, what a horrible start to dialysis. I didn't think it could get any worse than this. Boy was I wrong.

After I connected myself and cleaned up my hands, Dr. Chan came tell me that my appointment had been set and Meghan (the receptionist) should be coming to me shortly to tell me when it would be. When he came over, he said to me "Um, your machine is leaking".

When I turned around, I quickly scanned my machine and didn't see anything. Then I looked at my dialyzer, and there it was. I didn't tighten the blue tube thaht connects to the dialyzer tight enough and blood was dripping down my dialyzer and onto the floor. A substancial pool of blood had already developed on the floor beside my dialysis machine, all over the the side of the machine, the wheel of the machine, on the acid jug, on the extra Bicart, on the dialyzer itself and on the arm that holds the dialyzer.

I turned my pump off and asked Dr. Chan to grab a nurse for me, which he did. Stella came over and taught me what I should do if that happened at home. She told me to turn the regular pump off and also the dialyzer pump, to clamp both tubes coming out of the dialyzer, remove the tube, then reconnect it tightly. After that, it was fine, but the floor and my machine was still quite bloody. I knew that since Rose (my nurse) wasn't there today due to the massive snow storm (she lives a bit of a distance away) that I'd be doing a major clean up after dialysis....and it's hard enough to just stand up and walk around after dialysis, never mind getting down on all fours and scrubbing dried blood off of the floor and a dialysis machine.

After about half an hour, as usual, I began to feel a bit nauseated. I gave myself my gravol which made me feel better in about 10 minutes or so. I leaned my chair back and closed my eyes so I could get some rest. I began to dose off. As soon as I began to dose off, I heard a deep male voice say "HELLO FLO!".

It was Fabien, one of the techs. He came to see me last friday to teach me about maintaining and taking care of the water treatment system which would soon be delivered to my house. He did mention that he'd come back on Wednesday just to review, but I had forgotten. My heart sunk. If this visit from Fabien would be anything like his last visit, I'd be sitting there for 2 hours STRAIGHT listening to him demonstrate the various procedures for testing the water, changing filters, etc. Don't get me wrong, Fabien is an awesomely nice guy...but when you're tired, not feeling great, and dreading spending 45 minutes cleaning up after doesn't matter how great you are!

Fabien spent about 45 minutes chatting before he left.

I thought that was the end...but it wasn't. I changed my Bicart as usual. My dialysis friend Sadia came over to say hello to me and buy me a snack as she normally did. After dialysis and after clotting, putting my bandages on, etc, I put the feet of my reclining chair down to see a pool of water mixed with some of the blood that had already been on the floor. What the hell?? Where did this huge pool of water come from?? I looked around and realized that the cap that I had placed on the Bicart that I changed had fallen off, and almost all of the water that was in the Bicart container had spilled onto the floor. I almost cried.

I put my machine in disinfect and then I pushed it against the wall. I grabbed a chair, some disenfectant wipes, some gloves, and cleaned up as best as I could. I had to take a few breaks inbetween as I felt like I was going to pass out. It seemed like everything was covered in blood, and it was taking a lot of effort to clean it up.

I did a pretty thorough job, taking into consideration that house keeping would be around to clean up again.

When I went outside to meet my dad, he told me that he had a meeting to go to so he'd have to rush a bit. I was happy about this, as I'd be getting home in record time. When I got home, I then spent quite a while trying to call the government of Canada concerning my CPP T4! Needless to say, it took a LONG time as I kept getting busy signals when I called!

All in all, I'm sure that my previously stable hemoglobin has dropped. :( Ugh I hope Friday is a better day.

Saturday, March 1, 2008

My Cake - Cake Decorating Class!

Thursday was the last day of my "Intro to Cake Decorating" class. It was a lot of fun. On the tuesday before that, I took a one day class called Brush Embroidery.

Here are some pictures:

This is my first attempt at Brush Embroidery. Definite practice needed! LoL


Now on to my cake decorating class. First, some pictures of my classmates and their cakes:








And Finally, the long awaited picture of my creation!

This is the before picture. So plain....just screaming to be bathed in delicious buttercream


And now, finally, my very first cake!! Mmmmmm....


This is my cake after the car ride home. The cake put up quite a fight and only suffered minimal battle scars.


I'm pretty impressed with myself, especially for my first cake.

Now if you'll excuse me, I'm going to go and consume a good portion of that cake right now.
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