well......!!!

After the last 2 months of amazingly hellish pain, and waiting in breathless agony for the last 7 months-ish, I had my hemotology appointment on Tuesday finally. Turns out "hemotology clinic" is a fancy way of saying cancer clinic. They did a bunch of blood tests and ultra sounds which ruled out leukemia, thankfully. My hemoglobin was low, but otherwise the blood tests weren't bad. They also did a bone marrow biopsy, which are not for the faint of heart. They said they had never done one on someone with osteogenesis imperfecta before so yay, for my being a guinea pig and it was the most difficult one they said they had ever done. But I survived. They're checking for myeloma in the bones. I also have to do a 24 hour urine collection in a huge-ass jug they gave me so they can check for some kind of proteins that are present in urine if you have bone cancer apparently. That sounds fun, carrying Jug 0'Piss around the hospital my next visit, eh ;)

But I don't think it's cancer. I went to the rheumatologist on Thursday, because I seriously wanted to die from the pain at that point, and could no longer even raise my arms to brush my teeth or raise a fork to feed myself, or sleep for more than ten minutes at a time even on percacet every 3 hours. This time he said it's the rheumatoid arthritis, and SEVERELY so. He said there's fluid build up on my neck and upper spine causing the extreme shoulder pain and deformity. He gave me 3 cortisone shots, one in each shoulder and one in my hip. I had a really rough night Thursday night, but yesterday the pain was about 50% better, which was such a relief!! I know it's just a temporary band aid, but man, the pain's been so awful.

So the rheumatologist is putting me on a different medication for the rheumatoid, as the methotrexate is obviously not working. I have to try several more "cheaper" meds before they'll allow me to try remocade, (which a friend of mine is on and says it's like a miracle drug) as it's more expensive. I wonder if the people "at the top" suffered through this pain if they'd have to wait months and years and try other things...hmmm....

Oh!! On a positive note: the hemo clinic doctors told me there's a new experimental treatment for osteogenesis that i'm eligible for! They've submitted my appliction for it. It takes a few months to get approved, but apparently patients with it have 80% less fractures! You have to go and get it by IV every couple weeks for several hours. This is the first time EVER anyone has given me any hope whatsoever of treating this damn disease; I'm stoked! :)

Oh!! Another positive note: Going to see Matt Good again for my birthday this Thursday, my birthday present from Seanie!! Poor Matt's super sick with food poisoning right now though, I hope he's up to it by then.

So glad to be even in a fraction less pain, :),
D.

blech

I haven't blogged much lately. Whatever is wrong with me health-wise has been worsening to the point where I really can't stand the pain at all any more. The neverending winter from hell isn't helping much either.
Only 11 days now until I see the specialist, I'm just hoping they can figure out what's wrong and fix it.
Sorry it's a short entry, but I can't sit for long with the pain to type. I'll update after I see the specialist.
D.

on the upswing?

sometimes my posts are a little uh...down, I know, to put it mildly.
Last night I was feeling super depressed, but luckily posting depressing poetry I wrote on here did help me vent. :D (sorry , ha)

I didn't sleep at all last night between worrying about things, pain, and the stupid cat yowling right beside my head every time I would have the audacity to doze off.

I had talked to my other best friend, Mike, last night earlier though and planned to meet him for coffee this morning. Well, he had coffee, my stomach could only cope with diet coke. Mike's my oldest (and bestest along with Seanie) friend; we went to college for music together back in the Dark Ages and we've not been able to scrape each other off since. :P
I do find that spending time with Mike or Sean and being able to talk about things definitely does make me feel better.
I'm still feeling very sick today, but my soul feels a bit better. :)
And I don't think any cat or beast could keep me awake again tonight in my exhausted state! :P
Deb out.
D.

some days

Some days
I just get sick of feeling sick
Sick of being alone
Sick of waiting
Some days
I wish that you
Would rush to my side
Like I would to yours
If the tables were turned.
Some days
I just feel disheartened.
And sick.

D.

lazy me, paint and bureacratic b.s.

Yeah so I haven't blogged since before Christmas, sue me.
I haven't been that well, still waiting for the March 11th hemotology appointment, unless there's a cancellation before then, (which I am not, at this point, holding my breath for)
I'm getting by though. Even did some painting last week, first time since I got sick five months-ish ago, I think.
So what's new? hmmm, let's see. My sweet best friend Seanie bought Matt Good tickets for Matt's Cleveland concert on my birthday March 20th for a birthday gift for me..:) That's the good news. The bad news was that when I went to get my passport so I can go, last week, I was informed I couldn't get a passport because my birth certificate had EXPIRED. WTF!!! Most effing retarded thing I ever heard of. Apparently birth certificates issued in the province of Quebec before 1994 have been declared invalid because they were accepting some forms of religious i.d. for them prior to then....or some such stupid shit. You would think they would notify people of this, but nooooo. So I had to get my MPP to help me, pay an extra 50 bucks to rush the application as i need to travel in March, and pay 20 bucks to courier the i.d. and the application to Quebec because they don't "like " faxes. For a birth certificate I already had, basically. And they've known this since 1994. And I've went to the States twice since then, and could ostensibly have been refused re entry into Canada as my only i.d. showing my citizenship is "invalid". Nice, eh.
Then, if there is no problem with getting the birth certificate, i can then pay twice as much as normal (170 bucks) to try and accelerate the passport application process. Craziness. What a country.
I really swear I was Hitler in a former life to deserve the punishment that is this one sometimes.
D.

Health care, shmealth care

So the promised hemotology appointment has still not materialized. I spoke with my family doctor´s office and they had had actual voice contact with the ´backfromvacationallimportantappointmentbooking girl’ early today. She told them for sure she would call back today with an appointment for me. Needless to say, she did not do this, and when my doctor’s office called back later, they could only get an answering machine. I think this is absolutely ridiculous and total bullshit. I asked if my doctor could possibly refer me to someone else and I guess they are working on it. GRRRRR.

There is way too much snow here. It was so hard to get out of my parking spot today with the snow all piled in this corner. GRRRR.

/end of bitchfest

D.

snow, snow, go away......

Well I saw my Seanie Thursday night and it was wonderful as always to see him. :)

My open house last night didnt go exactly as planned due to a blizzard. A few people did show up though, and we all had a really good time. My other best friend, Mike, came with his gf, and Chantel and her kids, Tish and her kids, and Lori all came as well.

The landlord (aka the troll) and the snow plow they hired put a six foot pile of snow blocking my car in the driveway...nobody elses. just mine. And mine is the only one without a garage. And mine is the only handicapped/wheelchair accessible unit, go figure.

I hate snow. That is all.
D.