Ceya, are you still out there? - Lupus Message Board

Ann S · 12-13-2002, 07:23 PM

Ceya,
Sorry about not answering back again on the post in late Oct. You asked about flares and what Dr. to see when. I have no clue either, sorry. For me, the symptoms are fairly constant. Once in a while, they're extra bad......... is that a flare? I don't think so. When I hear people talking about their "flares", I get the feeling that they're not feeling too bad in between.
My experience with Rheumy's and Drs. in general hasn't been very helpful. The Rheumy sits and writes down all the complaints and that's it. He doesn't tell why they're happening, if it's normal progression, or anything........ He refers me to other Drs. whenever possible. You'd think with all the similar problems autoimmune people have that he could handle some of these without pushing you off. Who's got the time and energy to go to '15' doctors all the time? I can't look around for a better one either - it took me 6 months (and a 2hr. drive one way) to get in to see this one. Next place to locate one is 3hrs. away. Just saw him yesterday and now I'm supposed to go see a podiatrist and a hand dr. according to his reccomendations.
Anyway, I've just come to expect the unexpected. With time, you learn to predict some outcomes of some behavior (i.e.always major pain from vacuuming), but most of the time my body can react several different ways to the same thing. What's extremely hard for me is when I come to accept it, and get my pain tolerance built up to the level needed, ......... then ZAP!! something new happens or gets diagnosed and I fall all the way back down that awful steep hill again.
I also know what you mean about talking about it. A person at work, broke her wrist, which is not fun, but.......... I'm so tired of hearing about all the pain and all the ' oh poor so and so's' from the other workers. That sounds insensitive, but I think most of you understand where I'm coming from. I agree, our disease is invisible and so is our pain and anquish, etc., etc. It's expecially difficult to cope when I'm really run down and tired and I see my co-worker always playing on the computer, while I'm doing the work. My tongue really gets sore from biting it soooo hard.
Now I'm the one that needs to apologize for all the whining, but I just can't seem to accept my limitations and cut back when it comes to Christmas and I'm hurting and feeling a lot of self pity and resentment. Please bear with me, I'll lighten up soon .......Ann

Ceya · 12-17-2002, 06:57 AM

I am here! Great to hear from you. It is so nice to know that I am not the only person how feels the way you just discribed. I have been blessed in the past few weeks. I prayed very hard not to get down. My husband had surgery on his back. It has been difficult. We have 5 children and I feel like a single parent of and one more my husband. He is lucky in a way he has pain meds. But he really does need it. I work full time, go home and run kids to there activities until about 8:30. You can't imagine my house. It is just turned upside down. 2 of my kids are sick, Christmas is coming to fast. @ of my sons had birthdays and I had a boweling party for them. Well I boweled to. Now I am paying the price. I am so sore and my hand really aches. But I realize that in my mind I do not know how long I will be able to play with them. I fatigue had gotten alot better. I don't go home and drop at noon anymore. This is my biggest fear. If I get that way again we will be in trouble.
I use to love to sleep late. I look forward to going to baed all day. But now I wake up at 7:30. Or earlier. I ache so bad I have to get up. For the first time in my whole life I went to the gocery store and was shopping by 8:30..Petty cool. Hardly anyone in there. I try to move around to help the stiffness and the aches, take my bextra and plaquil(sp) as soon as I can. My mother also had back surger in Aug. of course she is in so much pain. She just can't even walk over to see me. We live next door to each other. Now Thanks giving we went to her house of course I had to bring all the food except for the turkey. It seems that everyone is so needed. Maybe we were just so strong before that no one understands that we are not the same. It is like they ignore me. So I keep my pains to myself. No one really listens any way.
I really like for you to whine who can we whine to. I know how you feel about I will be better. I do the same thing. Whine one day and better outlook the next.
I am so glad to hear from you. I was about to give up on the message board.
Ceya