I'm back.....

[Guest guest]

Dear Loop.....

My name is Carole and I used to belong to this group for years and years

and years and years.....it seems ad infinitum. I finally stopped a while

back when my emails went over 1000 and I just couldn't keep up with it

anymore, but I'm back now.

I've had stills since about 1998 I think and I got it in my 40's. My

onset was horrible and I truly didn't think I would make it but for the most

part it never got that bad physically again. My main problem with stills

disease I think is how it affected me financially. Prior to stills, I never

really worried too much about money and now that's all I seem to do. Which

is why I had to move from sunny Florida to freezing cold Wisconsin this

past summer. We were about to be evicted from our 2nd apartment and I finally

had to come back to my home town and be around family and get some help.

It's just so darned expensive to be sick. By the time you pay for doctors,

tests, drugs, over the counter remedies and for me I had to multiply that

times 2 because my hubby has fibromyalgia and is on as many drugs as me.

Plus to try to keep an old clunker running so that we can go to the

doctors/pharmacies/labs is a ton. But all that expense doesn't leave you much

for

rent and utilities. Bummer.

Anyway we're back in my home town. I have not lived here for 25 years - I

feel like I'm in some sort of time warp, my land marks are gone and new

buildings and streets are all over the place. The weirdest part is how often

I get lost and I try to figure if it's because things really have

changed, if my memory is totally fried from the drugs or I've just become nuts.

Hard to tell. But it puts me into a panic I've never felt before and when

my husband yells because we've gotten lost again, (He's never lived in

Wisconsin) I lose it myself.

I have never lived in a cold climate since having stills and I can

definitely tell it's making me more achy than I have ever been. I always had a

hunch that the cooler times in Florida were harder, but I know for certain now.

New doctors is challenging as well. DO, DO, DO get the Still's brochures

to give to new medical professionals. I had a few left and they came in

quite handy. I'm finally out so I'll be needing more soon. But new doctors

seem to be so focused on my onset and I'm like - but that was years ago.

Yes I really do have Still's and you claim you know about it, so treat me

will you? But they seem to want to go thru diagnosing me all over again.

Grrrr!

The main reason I rejoined the loop is two fold. In Florida, I really had

no social life. Al and I stuck pretty much to ourselves not being able to

go out and building friendships is hard to do when you can't share

activities. So we worked, did medical stuff and worried. Well, he understood

Stills and so did I. I was actually fortunate in never having to explain my

situation. But now I'm in my hometown and know too many people. I tell the

doctor how much it hurts to walk and he suggests walking for exercise!

Family want to do stuff and I just can't do those things anymore physically.

And now I need this still's group really badly again, to get thru what all

of you have had to do all along - be amongst others when you have stills.

Secondly, I have a stills complication now I believe. I'm in my late 50's

now and I've been bleeding vaginally the past few months. While I want to

joke and say that it's my youth trying to catch up with me, I know it's

nothing to joke about. I became menopausal early because of the steroids,

about 10 years ago now. Coincidentally, this is the same gyne I had 25 years

ago when I left! He did a pap smear and a biopsy and mentioned cancer

way too many times for me except when talking about my astrological sign. I

bled really heavy after that of course but it's still spotting and he was

concerned about that as well.

My biopsy came back negative but he wanted to talk to an oncologist and he

just called me back. The fact that I'm still bleeding makes him want to

do a DNC. The oncologist wants to do an hysterectomy. With my weight and

the inclination for fat ladies like me to get cancer, he just wants to take

it all out and be done with it. A DNC would clean it out but it could

happen again and again or they could find something in the dnc that would make

the hysterectomy happen anyway.

He said that I'm an unusual case because of the long term steroids and

Stills disease. I asked him if it was his wife, what would he do and he

thought a dnc. But he admitted that may or may not be the best answer for me.

They just opened up a brand new hospital a couple of towns away today and

they have a machine that they can do a robotic hysterectomy and he says

woman are released in a day or two and only have 4 little bandages. That's

where I would go if I needed the hysterectomy.

My crazy husband just made a really bad joke. Next week I'm having my 3rd

tooth pulled because of the darned steroids. Al goes, " oh great, they're

pulling out stuff from the top of you and from the bottom of you! " I wrote

to my nephew who is actually the person who diagnosed me over the phone

when I first got stills and he was a resident at the time. His answer was as

indecisive as my doctors - they must learn that in medical school. He

said, don't do nothing. He leaned toward the dnc because I have such a

difficult time healing. However, as I've never had surgery before, maybe it

would be a good time to do a relatively uncomplicated easier surgery (easier

for him to say) so that as my age and condition changed, if I ever needed

surgery I could compare the healing. And that makes sense. But if I don't

need to do that, should I?

So, that's where I've been on my summer vacation. How have you all been?

Carole in Milwaukee Wisconsin - who says you can't go home again??