Stress Vent

My mind is getting away from me and Google is at my fingertips. I promised myself, I wouldn't mention avascular necrosis until I know for sure but waiting is so hard. When they booked the MRI it wasn't a long wait but still a waiting game.

My brain keeping pinging around to my life after being diagnosed with degenerative condition but I need to put on the brakes. It's just so damn hard to not flip out at the unknown. I like to know what's going on in me. I read my own bloodwork results and follow along with all the tests I get.

I manage to stay away for a few days and then there I go, Googling it again. Every site has different takes on it. The one I just found said that in the early stages before there is much damage, it can be recommended to keep the weight off the joint in hopes that it will heal. It showed illustrations of a normal hip and then another with the crumbling hip ball. I went back to my X-rays and stared hard at them.

I imagine having to get another handicapped place card for my car and then I cry a bit. Then I begin designing what my crutches will look like. I think I would paint them white with pink flames... and maybe a hot red-cross symbol. They'd be super hot. Then I could start wearing matching nurse outfits with the white nurse hat.

Again, super hot. It almost gets to the point where I'll be disappointed if I don't get the freaking awesome flaming crutches.

But I'd really rather have healthy bones and hip joints. I swear I could just scream.

(now I'm mentally designing my Halloween costume)

Sweet Ride & My MRI

Bah humbug!

That sums up how I've been feeling. I'm really looking forward to my MRI, I'm also hoping it's just a hairline fracture. I said that to someone today and realized how absurd that sounds, hoping that my hip has a fracture. It's seriously better than the alternatives, though.

So, as pumped as I am about getting the MRI, it really sucks that it's on my birthday. Why can't they leave my birthday alone! It's been 4 years since I had a non medically infringed upon birthday.

I'm so very grateful that it's getting done but the constant pain is a lot to deal with. Sorry I haven't been overly responsive to the comments the last little bit. I'm just barely keeping it together at times.

The stress I'm having about my hip unfortunately sets off hot flashes from the chemotherapy induced menopause and the stress also makes the graft/vs/host flare which makes the stress worse. I can actually feel my entire emotional and physical being, simultaneously combusting. I'm such a bundle of fun.

Currently I am plotting to have a gang buster year with my hip if it's suffering the slow death. I'm likely (hopefully) jumping the gun thinking about needing a hip replacement at this point but this pain is just so deep and constant. It makes it hard to concentrate, walk, sleep, drive or sit. But pain or no pain, if it's avascular necrosis, my hip and I are going to go dancing, bike riding and anything else I can think of that my hip would like to do before it dies.

Let's just say my hip would probably have a bucket list if it knew it's days were cut short, it's certainly not going without a fight.

As terrible as the news would be, and if there is nothing that can be done, might as well make it a sweet ride going down.

MRI Me, Baby!

I have my important gallery opening tonight where they're going to pat me on the back for my photo but all I can seem to do today is stress. I'm meeting some friends later and my son who are coming with me to the opening and I should be excited. I'm sure I'll have a lot of fun.

The problem is I have a long awaited appointment today with an oncologist. I've been doing well and had graduated from having to travel to Vancouver all of the time. This doctor is coming here because we don't have any bone marrow specialists here on the island. I'm lucky that I only have to have these appointments every 6 months now. Traveling to them before was such a huge chunk of my life and I had it all down to a fine science.

Seeing him/her here and the fact that it's someone I don't know is making me feel like a fish out of water. Especially because there are problems.

When I go see him/her I need to discuss the problems with my joints and let him know that I need an MRI asap. My GP is worried about my hip pain and so am I. It has eased off a little pain wise but it's still there. Because the x-ray was inconclusive they need to look inside of me to see what's going on.

MRI me baby.

X-ray

So I've heard it from a doctors lips, they need to do x-rays on my hip and then possibly other scans to find out if it's avascular necrosis. Something scared inside of me says it is.

I had to see a walk in clinic doctor who doesn't know the specifics about me like my specialized doctors do. He thinks it's possible to get graft/vs/host in the joints which I have never even heard of. When I go to walk in clinic doctors offices I have to bite my lip from complaining but to be fair they usually only see people for cuts bruises and colds. I am a whole other animal.

I hope I'm just panicking and that it's just arthritis. Funny now I'd be happy with just arthritis when a week ago I cursed it.

I called the Vancouver BMT unit where they are always available to help a bone marrow transplant patient. They hauled out my chart (which is likely the size and weight of a small bus) and the triage nurse is going to get back to me.

Ok, just spoke to the nurse who consulted with the doctors and they have a plan for me to get this checked out. I've calmed down and am heading out for an X-ray. Keep your fingers crossed for me that it's nothing serious.

Pain & Fear

Here I go again,

and again,

and again.

My pain free days are good days and ones I take (very deservedly) for granted. I've begun to journal my pain levels because I have a very high tolerance and a very short memory when it comes to pain.

I find it tends to sift into my consciousness and then out again as if it never happened, although I always know a pain free day when I see it.

Sometimes it's my gut, sometimes it's my muscles, sometimes it's some heinous menopause symptoms and sometimes it's my prednisone induced arthritis.

My joints ache and bother me like I'm twice my age and it can be uncomfortable at the best of times. The cold seems to be the worst for it and my joints stiffen like I've been hit with a freeze ray gun (how cool would that be?) When it's at it's worst I can usually slide into a hot bath and the heat soothes it. At the recommendation of my pharmacist I've been taking fish oil pills but the pain is getting steadily worse.

I've noticed that my right hip gets hit the worst. Sometimes it feels so bad that it seems like a whole other pain. It feels like it is deep within the bone and the pain radiates down my leg.

It's getting worse despite the fact that the weather is getting hotter and hotter. My mother commented on how strange that is because it's been so warm. Last year the summer gave me several months reprieve with little to no arthritis so what's up now?

I've started taking Tylenol and that doesn't even take the edge off. Yesterday I started to become concerned but it's Friday and my doctors office is closed until Monday. Now that the pain is in the forefront of my thoughts I'm getting downright scared. The pain in my hand has become a stabbing one and my fingers are going numb. I am unable to function or get anything done. Holding a pen sends a stabbing sensation. My eyes are so dry that this extra heat makes them feel like they have been burnt.

Unfortunately long term, high dose use of predisone can cause something else that's a lot worse...

Avascular necrosis. It's bone death. It tends to happen in hip joints and leads to bone destruction and eventually needing a hip replacement. The fact that I even have something like this to be scared about just boggles my mind. I'm only thirty fucking seven.

I used to be a runner. I was a healthy eater, I never smoked, did drugs or drank alcohol. I cleaned my home with natural cleaners. I exercised every day and lived a healthful life. What the hell happened?

NO FUCKING WAY.

Anyway, despite all that, here I am. This is my life and this is what there is to deal with. Suck it up as usual, shove the fear away and make sure I get into my doctor office ASAP.