And it's been 16 months...

So a diagnosis of fibromyalgia, one more grand mal seizure, an MRI and a subsequent diagnosis of epilepsy, and here we are, more than a year since my last post. Also, apparently the H1N1 shot didn't like my epi meds or my fibro very much, but I suppose once this week of fibro flares and the mild allergic reaction passes, I will hopefully be better protected in the event the swine flu does get me.

Happily, still at the new job though and enjoying it very much. Odd weird/crappy day like anywhere else, but still awesome. Aside from that, nothing overly monumental has happened. Just working, taking care of myself, and doing the best that I can, even on the worse health related days possible. Also just finished taking a course this semester; an English class on queer theories in literature. I had finished my degree in 2007, but was able to take this one out of interest sake. It was a fair amount of fun and, aside from a few drier articles, overall fairly interesting content wise. Definitely not novels I would have ever likely chosen on my own, but that's largely because I spend my time in the sci-fi/fantasy section more than anything. Though I found that with many of my classes as well. Sometimes surprising the interesting things you can end up reading when you are forced to. Things that would have never even made a beep on your radar at any other point in time.

But I suppose I should go do that sleep thing,

Take Care all,

Why do all things delicious have to be coated in Red Dye?

So one regular EEG and one sleep deprived EEG, and they are no closer to figuring out why I had a seizure at work last September. In short, they are pretty well leaving it as a freak happenstance and the neurologist is sending me back to the rheumatologist to get tested for Fibromyalgia (finally), so on August 28th, we will see how that goes.

Maybe she can find an explanation for the most recent craziness that has cropped up in the last year or so. For some reason, I stopped being able to take the red coated tylenol without my tongue going number and my throat swelling slightly; uncoated tylenol, however, was no problem. Not thinking too much of it, and figured there was just something weird in the coating I was sensitive to, I shrugged and went along my way. About a month ago, I consumed a tomato wrap the one day at lunch. About an hour later, my entire body started itching and my throat felt weird. I came home, took an antihistamine and it seemed to pass. At that point, I sat down and went through the list of everything I had eaten that day. The only thing I could think of was the tomato wrap, and the tylenol issue cropped back into my head. After searching for the ingredients for the red coating in tylenol, I found one ingredient listed that would have been likely been common between the two: FD&C Red 40 (which is found in many, many different food, drugs and cosmetics). From them on, it was a suspicion of mine and I kept my eye out for it. About a week ago, I sat down to a candy apple (not thinking about the red coating it had) and about and hour later, my right sinus down to my throat went tingly and numb and my throat swelled a bit, followed by crazy itchiness so bad that I had a hard time getting to sleep, 3 hours later after taking my antihistamine, followed by two days of feeling sick. It was at that point that I realized, it is definitely the Red Dye (also known as allura red and is essentially the red food coloring many of us use). Doing some reading on the product, I've come to realize that it is in far too many products and have since learned (the hard way) that Cheetos also contain red dye and that avoiding it as much as possible is likely a good thing. Craziness I tell you.

And while I can no longer eat Swedish Berries, I have found that a large portion of Dare's Real Fruit Candy is dye free and yummyearth.ca also makes dye free hard candy, which makes me happy. (I am still awaiting my order from them in the mail and I will let you know how it is). Not that I consume large amounts of candy, but I do enjoy cherry/strawberry flavoured candy when I get the craving and thought I would have to give it up completely, but happily I do not. As far as other food goes, it has amazed me how many products do contain dye, many labeled vaguely by the word "color". I have also emailed some of these companies that list only "color" in their ingredients, and get responses like "the only colour they contain is the Certified Color listed on the label". Umm, yea, cause that isn't as vague as the label. I still haven't gotten a response from my reply of "But is the Certified Color artificial or vegetable based?".

On the upside, I no longer work in a call centre which has decreased my stress level considerably and has led to far less sick days. I actually enjoy going to work now and I think that has made a huge difference in how I have felt in the last couple of months. And Ian is coming home at the end of the month as well, which always makes me feel better as well.

But I am going to go make some cookies for my co-workers and use the M&M's that have been taunting me in the cupboard (ooo, look at us, you know you want the red dye we are swimming in). Sigh.

Take Care all,

Spitfire

http://www.youtube.com/watch?v=1qiGyxPplAw

well, not spitfire in specific, but pretty much. it would explain the random bruises i wake up with some mornings...ahaha.

night all,
take care,

I have a brain

So this morning was encompassed by a neurological test to read my brain waves to see if they can figure out what made angela end up in the er about a month ago. About all I know at this point is that I have a brain and the tech was doing a lot of typing, and produced some results, but nothing that they can share with me until after the neurologist looks at them to see if anything is funky. Maybe the last year has really been all in my head...ahaha...bad joke, I know. But hopefully in a couple weeks I will know if they did find anything wrong or not.

I realized the other day that it has been nearly a year since I started getting sick. This has made me realize two things: 1) You really don't realize how strong you are and what you can really do until something happens that throws a wrench into all the things you like to do. 2) It's okay to admit that you can't do something...it killed me to have to leave a physically intensive job for one that anything but physical intensive (mentally sometimes, yes, but that's just because this job makes me want to bash my head against me cubicle wall some days as some people are, how do I say this...special? But my supervisor advised against it as it would be physical damage and void my warranty, even though I am still within my one year coverage (for anyone who does not know, I work in a call centre for a cell phone company - result - weird people who make corny jokes, but it's entertaining and pays the bills)).

And the biggest thing I have learnt is that being brave doesn't always mean never admitting defeat. More and more it means realizing that taking a day off if I need it isn't the end of the world, and nothing is going to come crashing down if I don't get something done on a specific day; unless of course I was an architect, then that might be a different story. And that taking that one day off the prevent three sick days later is okay.

I've also learnt a lot about myself and, even though I have days that I am very negative about how I feel, I try to be positive; I try to laugh everyday, and I try to appreciate the little things much more than I ever did - you don't realize how simply picking up a cup of coffee is until it hurts your fingers to grab the handle. And while being young doesn't make being sick any easier, it gives me a better chance to do what I can to try and feel better in years to come and not let this take as big of a toll of my body as it could have if it didn't hit until I was 40.

Although I have always had a sort of respect for the elderly, that respect has grown much more in the last year (and to the person that left the comment on my blog a couple posts ago, if you happen to come by here again, please leave an email if you wish; I would love to talk to you some more. Or even email me at foofernuggett@yahoo.ca).

Also, as long as my doctor doesn't tell me no, I am considering doing the 5km walk for the Jingle Bell Run this year, which is sponsored by the Arthritis Society. I would do the running part, but a) I don't run unless something threatening my very being is chasing me and b) knowing me I would trip and fall and go tumbling into the Wascana or something. If anyone would like to pledge me to do the walk, let me know. Any pledges go the the Arthritis Society to fund many needed programs and research into the many types of Arthritis that are out there. The actual run/walk isn't until November 25th, so there is still some time. If anything, I want to at least volunteer for the event, so for those of you that do pledge me to walk, if for some reason I don't, the pledges will still go to the society anyway. Or if someone wants to join me, let me know. Registration is $40, did not see a deadline though, so I'm taking a guess that it's probably right up the time the walk/run starts.

But my half day off is almost over and I should go get ready for work,
Take Care all,

Borken.

So even though i hadn't felt spectacular the last while, I had been doing alright. Last thursday threw a giant loophole into that. I apparently had a seizure (possibly a mild stroke) at work. Scared the crap out of my poor coworkers and don't remember any of it. Was sitting at my computer, everything when weird and fuzzy, then there were two EMT's standing over me. The er doc had no clue what could have caused it and will now be going for a bunch of neurlogical tests to see if anything shows up. I also switched my family doc. The one that I had was really nice, but the desire to figure out what is wrong with me just hadn't really been there after nothing showed up on paper. This lady seems a lot more determined to figure it out, especially the most recent event, so hopefully she can shed some light on it that the other doc couldn't. But in the meantime, its baby asprin and as much rest as possible for me without missing too much work.

As crazy as the whole thing was, the worst part was my family flipping out cause I wasn't answering my phone (no cell phones in the er) and not knowing where I was until I finally got out of the hospital at 12:40 that night. I guess whoever originally entered my information into the computer at work had a real brainwave and didn't enter the emergency contact information so my boss had no way of getting a hold of anyone and by the time i got the er nurse to call a couple times, the line was busy cause they were trying to call me every five minutes. But I eventually got a hold of them and, while they were worried about me cause of what happened, were at least releived it didn't have a worse outcome. My Ian is also freaking out a bit, which I don't blame him, because he's a province over and there is really nothing he can do. He was going to head home for a bit, which would have been nice, but there is really no point in both of us losing money because I'm broken. I assured him that I should be okay and that I do have people within the city to look after me. Don't think it made him feel lots better, but knowing there is someone at least closer than him helps a bit I guess. Not knowing exactly what happened is probably the scariest part though because it means I don't know if it's going to happen again or if it was a freak happenstance. But maybe one day they will figure it out.

But in the meantime, take care of myself, concentrate on finding a better paying job and doing what I can until I hopefully feel better. I should also head out for now. Baba came up to visit this weekend and I think the soup she's making is almost ready...hehe.

Take care all,
Toodles,

Tired

So two doctor visits and a visit to a throat specialist and I still know nothing more than I did two months ago. On paper, I'm healthy. On paper, there is no reason I should be sick or for my glands to be slightly swollen in my throat and have trouble swallowing most days. 9 months of doctors visits and specialists and I still know nothing more than I did the first day my back started hurting or the first day I could barely button my jeans because of the pain in my hands. On the upside, I have had more good days than bad since May, gotten a new job (unfortunately not degree related yet, but still pays better) that involves no shift work and doesn't require me to constantly be on cement floor for 8hrs a day, which has helped a little. I have started doing Pilate's again and going for walks when it's not too hot out. I am hoping these help as much as changing jobs will. While it is still frustrating not knowing what it is that is making me sick, it is a relief to know it's nothing autoimmune, which eliminates many potential health complications for the time.
On the downside, the heat has made this week not a very good one, but still better than the bad weeks were some 4 months ago or so. At least I am hoping it is the heat anyway, and not that I am starting back to where I was in the winter cause that was not a fun time.
I have been doing some more research though into anything linked to symptoms that I have been experiencing since November. Anything that may mimic Lupus, but not appear on paper, anything associated with the pain, fatigue, increased skin sensitivity to the environment in general, anything at all the can explain what the doctor can't seem to find. In my searching, I came across Fibromyalgia (which my massage therapist mentioned the first time I went to see him and what my mom had even thought of knowing what I'm going through and what she's been going through with feeling crappy all the time and being in constant pain). In further research, many of the symptoms point to it being a very good possibility. Managed well, it can be tolerated, but, like Lupus and other autoimmune conditions, there are still days of flareups which can very much interrupt your daily activities. I have yet to run this past my doctor and, in a way, and afraid too as many doctors don't really believe in it and just believe everything is all in the person's head. My doctor has been really good up till now, but I have a feeling that she may be one of the non-believers. But I will still mention it, and see what she says. Even if it is not actually the cause of the problems, it's one more thing to rule out and one more step closer to figuring out what is wrong.
But in the meantime, I've just been trying to keep myself as positive as possible, especially now that Ian went to Alberta to work for a while, which has been a bit hard, but we keep in touch as much as possible, which is good. Otherwise, just been trying to focus on eating as healthy as possible and making sure I go for a walk or do Pilate's everyday to keep my energy level up and my attitude positive, especially since all I do now is sit at a cubicle and take calls all day. Definitely need that exercise, not only to keep from gaining 50lbs, but also just to keep myself feeling okay, because a couple weeks of just sitting around and all I will want to do again is sleep, even more than I want to now.

But it's Pilate's time,
Take Care all,

Not knowing is worse than the diagnosis

So its been well over two weeks since I should have known what the blood tests showed. Instead, I know nothing. I have not heard from either my rheumatologist nor my doctor since I saw them last in March. I know everyone says that no news is good news, but I'd still like to hear something either way. Plus, if it's "nothing" than why am I still sick? Granted the meds have helped and I can function more these days, but there are still days that are hard to get through, and some that are even hard to get out of bed. The hair loss has tapered down a bit, but the rest is still there, even if it is not as prominant some days. If it is autoimmune, I know they are incredibly hard to diagnose, but I still hoped to have known something by now. Maybe I'm just afraid they are going to end up thinking I'm crazy and telling me that it is all in my head and stop believing the different symptoms I am describing to them. Maybe I'm just being a bit pessimistic in these thoughts, but it would be nice to know something, even if it's not what I necessarily want to hear ('you have to live with this the rest of your life' instead of 'it is curable').

On the upside, I am officially done my degree. Know of anyone in need of a English and Geography major? It's nice to know that I am done, but a bit intimidating at the same time knowing that I have to find a career now and that I won't be going back to school in the Fall. Oh well, hopefully I will find something that lets me use my degree in some form, and if not, I will always be a proofreader which is alright as well.