How did you feel when you were diagnosed with scleroderma or some other connective tissue disorder?
I've heard this question so many times, on the messageboard and at my monthly support meeting. I guess we all react differently but what is common to us all is the lack of support on offer. How many times has a doctor raised his arms, shrugged his shoulders or shook his head when faced with what seems like a perfectly reasonable question?! How many times have you been faced with " What?" at the mere mention of the word?! I guess the list is endless and then there's you, right in the middle of the wilderness with so many paths to choose -- the right doctor, the right hospital, occupational decisions, family issues. I'm giving myslf a headache just thinking about it!
So how did I feel, how do I cope, what path did I choose? Well, wilderness describes my feelings quite well. That's how I first felt. I had no one to turn to, no one had ever heard of the condition so that must mean it's not life threatening, Ugh!
No one gave me any moral support. Fact is, it can be life threatening and it's not as uncommon as I thought. I spent days dwelling on the subject, wondering what would happen to me, would I get really sick, deteriorate over a period of time, would I be disabled, a burden on my family! What? And y'know, no one could tell me. I was banging my head against a brick wall for years.
I've had my problems just like everyone else, like pneumonia, eating problems, circulatory, breathing, need I go on? But y'know what? I'm still here and at the moment my condition is stable. Sure I have my problems but I came through them all and when the next wave of problems come home, I'll greet them at the front door and kick 'em out the back. My life has changed, there's no doubt about that, but dwelling on the past won't move me forward and I believe I still have a future worth living, for my family and for myself.
As for the doctors, well, some treat me and some don't. My own general practitioner shrinks into her very large chair whenever I enter the room, shakes her head and exclaims that my problems are chiefly down to sclero and the hospital can deal with that, so yeah, I know, I need to go back to them. Can I ask if the menopause is anything to do with sclero because if so, there must be an epidemic of it in the world?
I guess the bottom line is, don't go to the general practitioner in the first place so that narrows my options a bit. How can you complain of hot flashes and night time sweats when all you've ever complained about before is the cold. Weird, isn't it?
My next appointment with Doctor, Give Us A Clue is next year, March. I go to satisfy my belief in the fact I've still got it rather than news of a complete cure.
What else can they tell me, the good news is always followed by, "But!"
Then there's you guys, awwww, you know exactly what I'm talking about don't you? It's a good job too, I think I might have turned to drink, what a pleasent thought, and it rhymes too!