Sad

I've been really sad the last couple days and today I had tears come on a few times. I'm just so saddened by some of the people I feel should know me and be there for me... and are not. It hurts my heart. I'm also sad because my kids are disappointed and I feel responsible for it, like I've failed them somehow as their provider/parent.
I just feel really old and helpless.
D.

Pain and stuff like that there

I haven't blogged much because when I'm on the computer I'm only on for a couple minutes, back and forth etc because the pain in my back/neck/shoulders/arms is so intense I can't stay in one position for longer than that.
I had another MRI last week and it showed I have cervical spinal stenosis, a herniated disc in my neck, osteophytes/bone spurs in my neck. I apparently will need spinal surgery. Nothing really fazes me anymore, I just hope that this is a conclusive diagnosis and will make this fucking pain stop. And why the HELL this wasn't diagnosed ten months ago and five MRI's ago is beyond me.
There is more I'd like to blog about, but it hurts too much.
One little thing:
Mice in my house are not thrilling me, the dead one beside my bed this morning really grossed me out and was a nice note to start the day on.
I really hope things look up soon.
D.

quiz i stole from Adele ;)

Ten things you wish you could say to 10 different people right now. Don't list any names.
1. I wish you would hurry up and find yourself...and find me again in the process.
2. You are so selfish sometimes and it drives me insane.
3. You are the light of my life and I don't know what I'd do without you and your help most days.
4. I won't be speaking to you again.
5. Stop deleting my damn blogs before I'm done!!! :P
6. You are such a good friend to me.
7. You really should give your head a good shake!
8. I hope kharma gets you one day.
9. You really are too amusing!
10. If I hadn't known you forever I wonder if we would still be friends...


Nine things about yourself.
1. I'm a hopeless romantic at heart, though possibly jaded...
2. I have osteogenesis imperfecta and type one diabetes among other assorted maladies.
3. I love art and most music.(country and rap being exceptions!)
4. I love to paint.
5. I'm a classically trained pianist and vocalist.
6. I'm a vegetarian (this is fairly new)
7. I hate pancakes and creamed corn.
8. I love to drive fast.
9. I secretly love celebrity gossip.



Eight ways to win your heart.
1. Appreciate Matt Good / Barry Manilow.
2. BE Matt Good / Barry Manilow (teehee)
3. Be honest
4. Be intelligent
5. Have a dry/sarcastic sense of humour
6. big noses!!!! :) (rawwwr)
7. Be democratically political
8. Be kind to animals and people

Seven things that cross your mind a lot.
1. Him.
2. Songs
3. Ideas for paintings
4. Pain and my dislike of it
5. My kids
5. Worrisome things....like did I lock the door, turn the stove off...etc.
6. Things I need to do/finish
7. Money worries

Six things you wish you never did.
1. Get married.
2. Screw up my credit :(
3. Get sick
4. Get my hair cut a couple years ago (thankfully it grows!)
5....
6....

Five turn-offs.
1. Stupidity
2. Ignorance
3. Conceit
4. Smokers
5. Bad odours

Four turn-ons.
1. Big noses
2. Slightly younger men *blush*
3. Sense of humour
4. Good smells

Three good and bad moments in your life you'll never forget.
Good
1. Going to college/ The 80's in general :)
2. Visiting San Francisco :)
3. Meeting Matt Good :)

Bad
1. My marriage/divorce
2. Death of loved ones/pets
3. Nearly dying in 1998

Two things you want to do before you die.
1.Visit San Francisco again
2. Visit various other places like Paris,England, Italy, Australia

One confession.
1. I love someone.

Matt Good, cars, bills and stuff

Last Monday I had cortisone shots in both my shoulders....the following two days were kind of hellish...cortisone plays havoc with my diabetes (makes my sugar skyrocket) and it's very painful for a couple days after I have them. But now the pain has receded a LOT yayayayayay!!! Last time the pain was gone for ten days, this time I hope longer!! Any relief is appreciated!!
Friday I went to see Matt Good again, this time with a full band. I met my Matt Good friends Falina and John beforehand, and it turned out they were sitting right behind me at the concert, we couldn't have planned it better!! Matt was in fine form. It was an awesome night!
I haven't had a car in two weeks. I thought the alternator was gone, but it turns out it was just the battery. Thank god, because it turns out my brakes were waaaaaaaaaay worse than I originally thought, and they're costing me 1200 bucks, being fixed as we speak. The paying of said bill will take many months, but it's been horrible without the car, so you do what you have to do!!
D.

the end of the endless winter from hell....we hope

There has been actual warmth and sunshine the last couple days; what a departure, I was worried the sun might have forsaken us permanently for a while there. Whew.

I haven't blogged in forever, I know. My life is such a whirlwind of pain and drugs, it's hard to tear myself away!! haha Seriously, at least I have a bit of pain control with the meds and the chiropractor and physio etc.
I'm hopeful the pain may leave again one day.

Not much else going on. I've painted...umm...once or twice. I should get back into it, but I still have a lot of bad pain days. I really hope that changes now that nicer weather is finally here.

I'm boring today. I have nothing else. :P

D.

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.