arthritis in the spine

[Guest guest]

I went to my doctors yesterday and he said that the arthritis in the bottom of

my spine is getting worse. He doesn't believe that I am a good candidate for

surgery because I have a real high infection risk. I have only been able to be

on methotrexate and prednisone for 2 years now, because I kept getting real bad

infections on Humira.

Guess I just need a pep talk. Fighting as hard as I can to stay out of a

wheelchair permanently.

" traface22 " <traface22@...>

[Guest guest]

Dear Traface22,

Needing a pep talk now and again is perfectly normal after dealing with this

miserable disease. There are months when I feel like a pep talk could be

used 24/7 around here. Besides that's what a support group is for, support

when you need it. I've had similar problems with the biologic drugs, though

I¹m getting ready to give Simponi a try in a month or so. I have gotten my

hopes up so many times that a medication is going to help me or reduce my

problems that it is hard to even get excited about a new medication any

more.

Believe it or not I still try to think positive, but it gets harder every

day. I've been sick with this disease now for at least 10 years, at least

that's when I was first diagnose, but it had been going on for years before

that as well. I have arthritis now in almost every joint in my body. My

spine, feet, toes, knees, jaws, hands and elbows are probably the worst

right now. I've also broken my pelvis twice without even knowing it. One

spot won't even grow back together and it aches almost constantly. If I

wrote down everything that was wrong with me, you wouldn't believe it. Even

I doubt it at times and yet I know it's the truth. Surgery is out due to

COPD and diabetes.

Some things I still do every day to keep my spirits up. I thought since

they help me I thought I would pass them on. Before I go to sleep every

night I do my best to think of 10 things I'm grateful for and I normally go

way past 10 items and that helps me emotionally. I tell myself that even

though I have chronic pain every day, I have great doctors who actually seem

to care. I have a wonderful family that still wants me around even though I

feel like problem more than a problem solver anymore.

When I get frustrated with my power chair, since I'm in it now almost 95%

each day, I thank God that such a device actually works and that one even

exists. Though I have to admit that I cuss the chair almost daily...lol.

My house looks like a roller derby race is held here every night, since my

walls all have dings and holes in them from running into things. I do all I

can to keep my mind busy and active. That's not easy with chronic pain and

being on pain killers every day. I read every day, I mess around on the

computer and check out the support groups I belong too, and I watch taped

programs from TV. I stay interested in sports and current events, even

though there are days when it all seems part of another world.

I guess what I'm saying is it isn't easy, but if you do make the conscious

decision to try and find the good in each day, you normally can find

something to be happy about. I also have two little dogs that go from

making me laugh to wanting to shoot them everyday for waking me up with

barking or just having to get up and let them in and out. Even that is

better for me than just not moving all day long. Life isn't easy and there

are times when I want to just give up. So far I've managed to keep on

hoping for a new medication that will at least ease the symptoms and make my

life easier. I've mainly found that hope is everything. Without it, I

can't move in the morning, I don't want to take a shower or get dressed and

I don't want to face another day. So do what ever you can to keep hope

alive. It's the most important thing of all.

I don't know if this is what you were looking for when you wrote to the

group, but sometimes I think we forget about the people who have this

disease so bad, that life becomes more painful than it's worth at times. I

try not to judge people and I know we all suffer at different levels. I

hope that something in this email has helped you through another day and you

get some relief from one of the many medications out there. I had good luck

with Arava for years, but now it seems to be losing it's affect, or my

disease is just getting worse. It's hard to tell.

Anyway, good luck and I hope today is a better day for every one.

Sincerely, Fran in Florida