I think I am just gonna fall apart :(

spacey · Tadpole Joined: 29 Apr 2005 Posts: 17 Location: Oregon

Hi update on naturapath: they took blood and friday they will let me know what treatments I will get. Being a veggie kept me flare free for over 4 years. I truly believe that of course doctors don't, but thats o.k. Recently I have been way overdoing at work and home, coaching my doctors basketball, working 12 hours a day..... Twisted Evil

Started to get little signs and ignored them, bigger signs and ignored them, and then I was done in. Could not move, pain, swelling....I think the hormones or additives or something makes me sick. I would literally get sick in my stomach if I looked at or ate meat or chicken. So I stopped eating it and felt so much better. So I am really hoping all goes well friday. sss Stay well Exclamation

silverlioness · Posted: Tue May 17, 2005 9:26 pm Post subject:

TracyDawn's first post feels like a page out of my life story. I feel like I'm falling apart almost every day. I get weird bruises, too. Doctors ask if I bruise easy- not really, I just get unexplained bruises. I've made that same "joke" about the autopsy. In fact, just yesterday to my mother-in-law. I get the "I don't know" all the time, too. I want so bad to say "then find someone who does." What kind of a doctor sends a patient home with "I don't know" as a diagnosis?

Luckily, my rheumatologist has good availability, but he mostly works with other illnesses. Unfortunately, no one ever offers me pain medicine. I have to force myself out of bed every day and they give me Celebrex. Yea.

I've been sick a long time, but just got diagnosed three years ago. I figured it out on my own at first. It was a relief to know I'm not crazy. I know no one in our families understand. My mom wouldn't even believe I had lupus until last year.

derlinda · Posted: Wed May 18, 2005 4:45 am Post subject:

hi silverlioness,

sounds like you are not getting the support you need, i know how that feels. i have been using web sites like these for help and it has done me a world of good. i have gotten some great advice and feed back.

i also live in colorado, i think it's really hard on us because we are so close to the sun. i have bben sick for a while and i am working really hard on just taking it a day at a time Rolling Eyes

, the more my attutude shifts the less my body hurts.

do you go to denver for your doc?

best,
melinda

pharmacygirl34 · Tadpole Joined: 19 Mar 2005 Posts: 26 Location: Idaho

Oh my gosh, ditto on all of it. And you are right this website has been the only saving grace I have had after being sent through a variety of doctors and feeling like a meat platter being served for all but no one will say if its good or not. I will be so glad when the medical community as a whole understands Lupus. They have put so much effort into the outerspace things like mars but can't explain our Lupus. It is coming though. The more people (sadly) that have this the more this community will come together for the better of our peoples.

Hang in there, because here we do understand and we know your not crazy. I thought the same thing for many years but now I have an answer. Half the battle there, just knowing what is wrong. Second half, how can we fix it.

Here there are so many people that have tried so many different types of therapy that it gives us lupies something to go on and try to better our lives. If something doesn't work, its okay back to the drawing to board to try another remedy.

I have found that what works one day on me doesn't neccesarily work on me the following week. It is a day by day struggle, an added challenge the life we are given.

Your mental thoughts and process's will be your best weapon when your body fails to comply with your standards. It can be hard to be upbeat when you are in so much pain and have been debilatized in some way. But you do have this site and somebody will listen. It may take a while for a reply and it maynot, however you will be heard by someone who is hear because of our common challenge.

Hang in there. Keep your spirits up. It is all you have got and nobody or no disease can steal that away from you, unless you let them. I keep telling my self this and when I get down I come to this site and I feel better when I leave it. I have vented, and hopefully gained some insite where there was none before.

Love to hear from you gals,
Angela

Poncho · Not So Newbie Joined: 14 May 2005 Posts: 6

Hi Everyone, I have been to so many doctors, treatments, clinics and hospitals I lost count. What I did not lose count of was which doctors helped me the most as my time with Lupus and Ra increased. Some Rheumies I sware are retarded I tell them the same thing like every 5 minutes then they look at me as if I am insane about what I told them, so I said chuck this I show them where it hurts and explain exactly what the hurt feels like. I am on 20 kinds of meds and the problem for many people with Lupus and RA is those meds stop working after a period of time because they were orginally made for short term use. The doctors have nothing to replace them except pain, sleep, or depression medications, or medications like aspirin, tylenol etc which after taking 12-16 a day you realize you need to increase to narcotic strength pain killers. When these dont work they suggest pain clinics and yes all kinds of alternative therapy, beware of lumbar blocks, they could help one minute the next make you worse. And also dont spend $ on everything people suggest to you that is supposed to help you think painfree and stressfree. My aunt sold my parents and I pignoginol it turned out to be tree bark. Don't get desperate like we did, look somewhere else like within yourself and review others wwho have years of experience in sickn ess. Please dont take chances in the sun in any manner shape or form until you find out what your sensitivity level is. Stay inside and find out what you can and cant do there first, then work your way outside. I am seriously thinking about a morphine patch because the doctors informed me that my intense pain is from soft bones and RA in every connecting joint in my body. It's addictive and I need to remember that I can get extremely depressed but what am I now? What are you now? That to me is the question you need to think about first and foremost. What will benefit you and aid you in being able to do the simple things in life others take for granted? Tough questions, tough love, tons of tears, tons of laughter and alot of 1 song that fits the situations best for me I sing it out and sometimes make it my prayer to God, It's I Can't Get No Satisfaction by the Rolling Stones, Remember its not because we haven't Tried.
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I have had lupus:SLE?RA for 38-39 years. I am in the process of coming back from double pnumonia, getting my life reastablished.

silverlioness · Posted: Wed May 18, 2005 10:15 pm Post subject:

Hey Melinda-

My doctor is in Lakewood. I originally went to a doctor in Denver. His office was in an annex to St. Anthony's Central Hospital. He didn't even deal with autoimmune disorders and saw me anyway. He told me I didn't have lupus that my primary care was just being over-zealous. So, I changed doctors. I like the guy I see now. He's a little strange, though. Thanks for responding.