I have basically given up on trying to figure out what my real diagnoses are, besides the couple that I do know. And I seriously doubt that anyone on Dr. Phil's staff will read this & even care what's going on with me--or help me find the answers! I've written Dr. Phil many times just to be ignored.
So here's my story (as short as I can make it): In 1997/98 I was diagnosed by 3 docs with fibromyalgia. Of course, some docs still don't even believe it it exists. Idiots! I'm in southern Indiana, & our health care here--at least from my viewpoint, & my hubby agrees--is not even close to quality! Maybe if I had a lot of money, I'd be able to find out the whole truth about what's wrong with me. We've been bankrupted since I've gotten ill...buying medications & going to different docs.
And I don't just have fibro. There is a LOT more going on, but even my rheumatologist doesn't know & doesn't seem to have the ability or desire to get to the bottom of what's going on with me! And for what my insurance and I pay him, he should be able to!! But it's just easier giving me meds to just manage my symptoms. I run low-grade fevers every single day...& my normal temp--for me (it's a bit different for everyone) is about 97.8 to 98. So when my temp is 99.8 or 100, I have a FEVER! But my primary care doc just ignores that. Also, my last sedimentation rate, which helps measure inflammation in the body, was 38! That's NOT good! Normal is 5-20. In 2004, when I went to a specialist nurse-practitioner in Florida (my friend's "doc"), my sed rate was 47!
I had an abnormal Pap smear earlier this year...well, I had to have a "colposcopy"; that's a biopsy of the cervix. Thankfully, it wasn't serious, but, guess what? It was inflammation! Hmm, wonder why? Because my body is full of inflammation! The only person who ever seemed to care was the nurse-practitioner (who is a specialist in rheumatology--which is the docs who help with arthritis, autoimmune disorders like rheumatoid arthritis, lupus, etc.). I even have inflammation in my JAW! I have TMJ & have had it since the 1980s; there is practically nothing that will help that pain & nothing the docs can do about it! (I've already gone through having a splint, & I had braces for 3 years!) It's worst in my left jaw. Even my MRI in 2005 (I think that's when it was) showed the abnormalities in my jaw.
From an X-ray I had a couple of years ago, my rheumy says I have degenerative arthritis in my hips. I am never without pain! I'm going to have an MRI for that area, but first I have to have my rheumy call my insurance because it has to "pre-certified." I've had multiple trigger-point injections in my hips--even in my jaw! Sometimes they help; sometimes they don't. I've been to a pain doc, but he couldn't do much either. I'm so, SO weary of being ill, in SO much pain, and being so wiped-out exhausted all the time! I HATE going to docs, I hate taking so many meds, & I hate NOT KNOWING what's going on with me--and NO ONE cares! Even my hubby is SICK of it! Actually, he's been really supportive overall, but it gets tough for him to work full-time & have to come home & do the things around the house that I simply am physically unable to do.
The only good thing is that I am barely able to work very part-time from home. Even that can cause pain, though. I'm a freelance proofreader (no benefits, of course) for 2 Christian publishers. I have to limit how many projects I take because if I work too much, I'll be wiped out & unable to continue working. I'm fortunate if I can gross $5,000 a year. But, because we don't have kids & my hubby work full-time (at a fairly low-paying job), we're not eligible for SSI, Social Security Supplemental income. I've been waiting for over 3 years to get disability--IF I even end up getting it. I have a good attorney who specializes in disabilty (who only gets paid if I do), and now we're just waiting--interminably!--for Indiana SS to schedule a hearing before a judge for me.
Unfortunately, in the meantime, not only have we been bankrupted, we're living paycheck to paycheck and have absolutely NO savings. Just paying co-pays for my meds is expensive each month! I even try to sell books on eBay sometimes (when I'm able). Typing too long (like now!) puts my shoulders & neck in pain. And, of course, when a person is in horrid physical pain & has so much exhaustion, it's so easy to get depressed. And, after ten years, I'm just in too much pain & too weary to keep hunting for answers. What's the point? It just costs too much in co-pays to go to docs & to continue to have procedures done. We got rid of some of the medical debt with the bankruptcy, but then I got appendicitis in Feb. 2006 & had to have that removed--and the surgeon found some sort of tissue holding my right ovary & Fallopian tube against the right side of my body--he'd never seen anything like it in over 20 years of practice! He fixed it, of course, & that put me in a remission for awhile (a few months). So now we have medical debt again! Still, I 'm thankful for appendicitis in this instance; at least I got some relief for awhile.
It seems like I have some sort of connective tissue disease (since fibro doesn't show up on tests & my tests are abnormal). I'm also anemic & on iron & folic acid pills now. I had to stop going to church due to the pain of sitting in the pew for so long. I miss it. I miss having friends. I'm extremely isolated. And on June 26, 2006, the Chihuahua who was closest to me (Mommy's Girl!) just couldn't go on any longer. She was 17 & had been getting medicine for congestive heart failure for over 3 years, but we had to make the difficult decision to let her go. It was the last gift we could give her. Since I'm ill & mostly nocturnal (not by choice), I no longer have my little shadow to sleep beside me; our 2 remaining Chis are Daddy's kids. I still miss Chi-Chi SO much! At least she had a good long life & didn't suffer except for that last month. (We never had children; I left it up to God, & it just never happened, probably for the best.) I'm 46 & my body feels much older.
To anyone who read all this, I'm sorry to go on for so long. I really need to get offline now. If anyone wants to check my eBay books (mostly Christian fiction but other books too), my user ID there is chiandbutterflylover.
Since I went into another major "flare" when winter came in 2006, I may have to go on Prednisone again (which I hate due to its side effects). There are many times I'd rather just go to sleep & not wake up, but I've promised my hubby & mom that I won't commit suicide. I can't do that to my family. But when I pray I tell God that He can take me anytime. Sometimes I really think my hubby would be so much better off without having to worry about me & take care of me. I feel SO guilty for being ill, even though I did nothing to bring it on. Maybe someday, somehow someone will help me! Dr. Phil's staff, I'm DESPERATE for help! I'm going to try one more time to email the show...but I don't expect a response. So I'll just keep trying to hang in there one day at a time. I'm at a loss as to what to do. Forgive me for going on so long (anyone who has read this far). I'm really depressed right now (as anyone can tell). I just don't know how much longer I can go on like this! For those who pray, please, PLEASE pray for me. My name is Joy & I live in southern Indiana. Thank you to anyone who prays for me; I appreciate it more than you can know! For anyone else who's going through something similar to me--or worse--you're all in my prayers. I understand so well how incredibly difficult chronic illness can be, but I don't think Dr. Phil really "gets it." If he did, he'd do more shows about what MILLIONS of people have to live with every day! How sad. And, no, I'm not a hypochondriac. I have proof from my docs about that. I would never choose to live this way! I'd love to throw away my meds & stop going to docs. We just can't afford it! In fact, I'm starting to not go to my docs as much as I need to anymore; I'm just too weary of it. I also have moderate asthma & multiple allergies. *sigh* 
Joy
P.S. For those who have chronic illnesses, a good website to go to is http://www.restministries.org. Everyone take care!