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Posted 8/31/2008 4:23 AM (GMT 0)
I went to the rhumy on Friday.  She ran a bunch of blood tests and a urine test.  Now I have to wait till Oct. 15 for the results.  I've been feeling really bad lately.  I've been having alot of breathing problems, weekness, and neck pain.  As much as I don't want to have Lupus, I am hoping that this Dr.  will fianally have answers for me.  I sit in the drs office and just feel like crying because i've been trying to find answers for so long.  Every time it seems that they run the initial bloodwork on me and say theres nothing wrong and then it always turns to depression or weight.  I walk away feeling depressed, feeling discouraged and questioning if its all in my head. 

Then the pain, or exaustion hits and I'm positive its real.  I get so frustrated cuz I know my body and I know that I am not well, I know the pain I feel.  I just wish the drs could feel what I feel.   I feel so out of it most of the time, like I can't get my thoughts together, concentrate, or focus on anything.  These Drs always want timelines and complete sx and its hard for me to get it all out to them.  I'm a push over I don't like confrontations and I feel intimidated by drs.  When I was at the er for my breathing last week they put me on prednizone and tonight is my last pill.  For the first 2 days I was on it I felt pretty good, then not so good.  My hair on my head is coming out in complete strands.  I even think my eyelashes may be falling out.  My face has a constant redness on the cheeks and there are like little broken bloodvessel looking things on them.  I look like I've been sittting in the sun with goggles on.  My eyes are all white around them.  On top of that I have developed dry skin on these areas of red.  The dr said that I have a rash on my chest as well.  I guess I never noticed. 

I know this is all just rambling and I'm sorry I'm just feeling down tonight about all this and I don't know if I'm more worried about having a dr tell me its lupus or having them say its nothing.  How do you keep going to dr after dr and be told they can't find anything and keep from being depressed.  I have 3 girls that I want to be here for.  Right now I feel like I'm here but not here if that makes any sence.  I keep praying that I'll find out whats wrong and then atleast I can do something about it.  I can try to make things better.  There are days I feel so exausted that I feel like I need to be in the hospital.  I went to go get a few groceries today and started shking so bad from the inside out I had to leave.  Thank you all for being here to talk to.  I feel like noone else truly understands, and who wants to here you complaining about how bad you feel all the time?  

Posted 8/31/2008 6:53 AM (GMT 0)
I understand. I'm still a bit angry and confused myself but I can say that I do understand what your feeling!

I know the exhaustion, feeling like your not parenting to your liking, shaking, pain, normal tests, breathing problems, prednisone, hairloss...I have been there, am there now and will be again. I am not down-playing how you feel, just letting you know that I truely do know!

For me, I had to find the best Rheumy I could, and I truely do believe that she is the best available to me (She is out of state, two hours away!) and determine that what she said was the end all be all.

Granted, if she said something totally out of whack, I'd have to question the situation.

I had to decide to trust her and believe that she knew what was best for me and do what she says (I still struggle with following all of the instructions/meds/rest).

I wouldn't recommend doing that if your not comfortable with the doctor or if they don't listen. She doesn't always tell me what I want to hear or seem overly consoeling, but at the end of the day she really does know what is best for me.

I did go through quite a few Rheumys. I decided to consult with her and she immediately took me on as a patient. My insurance does not cover her and I have had to have fundraising car washes to continue to see her. It has been worth every penny. Simply because I decided that she knew best.

She is the head of the Lupus Center at Johns Hopkins in Baltimore, MD, Michelle Petri. Johns Hopkins is cutting-edge, up to the minute and has patient from around the world. They are writing the text books and making desease altering discoveries. Can you go there? Even if it were only a consult, she will coorespond with your regular Rheumy and give orders/suggestions...If your Rheumy is willing to communicate and take direction.

I am very fortunate to have been accepted as a patient.

Have you consulted with any research hospitals?

Best of luck and keep me posted,
Stephanie
Posted 8/31/2008 2:37 PM (GMT 0)
domanique, I feel like you were writing a page out of my own life from just a few years ago. I was in that awful place of diagnosis limbo for about 3 years before getting diagnosed and it really does a number on your emotions. I don't think doctors know how hard it is on us emotionally to know there is something very wrong, but to have no name for it. I know for myself, I kept doubting and questioning myself wondering at times if things were really all in my head. It was my 3rd rheumy who finally saw me when I was sick enough and diagnosed me and started me on prednisone and helped to give me some of my life back. October 15 seems like a long time to wait for your labs. I would think some of them would be in within a few weeks at the most. Can you request the results when they come in? I'd have a hard time waiting that long.
Posted 8/31/2008 2:57 PM (GMT 0)
Domanique, I believe that the biggest failure of the medical community is that they fail to talk to their patients about the emotional effects of their physical problems. When I was diagnosed with fibromyalgia, my rheumy (at the time) told me that I didn't have lupus, but I had fibro, and prescribed flexeril because he said that sleep deprivation could cause fibro, and sent me on my way. He didn't suggest a fibro support group, or anything else to help me understand the emotional and physical outcome of this illness. With a 10 minute talk and a few suggestions as to resources, he could have saved me so much grief and suffering. The same happens when we're in diagnosis limbo. Doctors cannot guess and tell so they don't talk at all to some of us and we walk away wondering, doing our own research, sometimes for years. You're not alone, domanique, nor are you neurotic or crazy. I'm so happy that you have found us because this is an understanding supportive group of folks who are or who have been where you are.

I hope you can get a little peace from talking to your friends here.

(((hugs)))

Pat
Posted 8/31/2008 7:04 PM (GMT 0)
Thanks so much! I was feeling really down last night. I am not feeling great today either. I have a bad sore throat and feel congested on top of it all. With my kids being back in school for 3 weeks now they bring home all kinds of germs and I always seem to catch everytthing. But reading your responses helped. Thanks again
Posted 9/1/2008 12:58 AM (GMT 0)
(((((( Domanique ))))))) It IS really hard to deal with chronic illness when you don't know what you are dealing with. Its hard after dx too. . . . but at least you have a name for it and, hopefully, a game plan by then. Your documentation is REALLY important. The docs get SO many clues from your symptom list. There is a post in "Lupus Resources" on making notes for the doctor visits . . . . but, initially, you need a really complete, chronological list starting with your earliest symptoms. You can create this list while you are on the computer. Reading posts here will trigger your memory every time you see someone mention a symptom. Before I found this website, I didn't even count a lot of my symptoms because I thought it was all just normal stuff . . . YIKES I thought most of my junk was really normal. We just learn to live with SO much. I have a hard time in the doc's office too. That's why I always bring my typed notes. I have one for me and one for the doc. It has my current symptoms, rx meds, otc meds, questions and a statement about what I want the doc to accomplish on that visit. It really does help with most doctors. A couple docs just took it and put it in their file. But on the following visit, I realized from their comments that they both had read the sheet I had prepared for the previous visit. Are you seeing a rheumatologist??? That's when I started making some progress with dx and treatment. The rheumy is the one who can put all the clues together. It really is a difficult process for a doctor because these autoimmune diseases mimic each other and so many other conditions. I hope you make some headway with dx soon. Blessings!
Posted 9/2/2008 3:31 AM (GMT 0)
I just saw a rhumy for the first time this past week.  I have tryed the list of symptoms before.  I handed it to my previous dr and she didn't look at it.  She sat it down on the table and said that when people obsess over thier health so much they make lists its a red flag of depression.  Then I made the mistake of doing it again and put in there how I'd been told all my problems were depression and she has made sure that my nuro and even this rhumy she sent me to knew that there was past dx of depression.  The reason I know this is that I got copies of the reports sent to my nuro and she had sent him that info.  The rhumy I saw the other day asked me are you depressed now?  How do you answer that?  How can you not feel depressed about not knowing whats wrong with you, doubting yourself, not being able to do all the things you need to do.  So, I told her I was depressed over those things.  Maybe I shouldn't have but its true.  My earliest sx were 16 yrs ago after the birth of my daughter, back then it was only weekness and feeling tired all the time.  Things have changed in the past 5 yrs now, alot more things going on.  I will try the list thing again.   Thanks

Posted 9/2/2008 4:00 AM (GMT 0)
(((((( domanique ))))) Most chronically ill people ARE depressed. There can be many reasons for depression . . . but one is a lack of certain brain chemicals. Pain uses up these chemicals. Lack of sleep prevents them our body from making enough of them and lack of ability to exercise also decreases the amount of brain chemicals like seratonin. So you probably really are depressed. A lot of members started out with a depression dx and actually started treatment for it. For me it was actually quite helpful, physically. It still took years to figure out what was causing the fatigue and other issues, but the anti-depressant remained an important part of my treatment for several years. I did have concern that I might need it forever . . . but I'm happy to report that I haven't needed it for almost two years now. Most of us have to chip away at one symptom at a time. I hope you make some progress with your doctors soon. Sorry the list thing didn't help. I did have one doctor that all but threw it across the room . . . . he is no longer my doctor. It's my way of making the best use of the few minutes we are given for some doctor appointments. But . . . of course, use your own judgment with the personalities of your own docs. Blessings!
Posted 9/2/2008 11:33 AM (GMT 0)
except for the great internist I have now, every time I leave a drs office they act like what every they said explained everything. and I walk out the door going, but that didn't explain anything! Then I am angry at myself for not speaking up. maybe they should have a new field of study in medicine called "Autoimmune Patient's Advocate" then they can go with you to your appointments and make sure you get answers.

well I make a list now but I'm not sure that it gets all my concerns across.

Marie
Posted 9/2/2008 2:01 PM (GMT 0)
I feel llike these drs take this oath to do no harm, but yet I feel like when I see themthey have harmed me. They've added to my stress, they've made me question myself, ad I leave feeling worse then when I went in.
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