Tuesday, June 29, 2010

How am I NOT bald?!

My hair is falling out. Well, really it's been falling out for over 3 years. Like this, every. single. day. And this is just what I took a picture of in the morning after a shower. This isn't including what was lost IN the shower or what will come out when I take my hair out and brush it tonight.

**I'll tell you now, this is long. It's my "how I was finally diagnosed" story. Feel free to move along. I won't be offended :) **

I think April /May 2007 is when things began to get get worse for me. I've had medical problems all my life ranging from hip, knee, ankle "sprains" & brusitis to girlie issues, frequent UTI's, strep infections and so on. Test after test, CT scans, bone scans, physical therapy, x-rays.... blah, blah, blah. Nothing was ever found. Nothing.

But, I started Lupron Feb. 14, 2007. Yes, I remember the exact date. I could probably even tell you what I was wearing if I really thought about it. I was desperate to find something, anything, to help my pelvic pain. I had been on pain meds for years, seen who knows how many GYNs, had laparoscopic surgery, Oct. 31, 2006, then was told "I didn't find anything but adhesions. There is nothing more I can do. You need to see a psychologist and a pain doc." And with that I found another GYN. This one actually tried to help. He suggested I try Elavil. I did that for a while but it didn't help. Then he mentioned Lupron. He thought that maybe I did have
endometriosis but was missed. After a lot of research and debating what to do, we decided I needed to try it. I couldn't function most days. I had maybe 5 or 6 "good" days a month. By "good" I mean I was able to get by with Advil or Motrin and not Darvocet. Lupron puts you into menopause. Hot flashes, mood swings, night sweats, dizziness and my very first migraine!!.... the whole bit. It was supposed to stop my heavy bleeding but it didn't. I was on it for 2 months, did 2 injections, and I was miserable the whole time. My entire body hurt. Kinda like now. I couldn't do it anymore so I stopped. I was depressed and began to think that maybe I was crazy and possibly, it was in my head.

My GYN sent me to a specialist at UCLA. Thinking I was FINALLY going to get an answer I was happy. WRONG!!! She told me I needed to do 4 more months of Lupron, HA!, and that I possibly had adenomyosis but that would be up to my regular GYN to decided if a hysterectomy was really needed. She never saw me again. She wanted me to restart a drug that made me miserable. She didn't care how I felt while I was on it, in her opinion, I didn't give myself enough time to work. OK, I was anemic from blood loss, I hurt, I almost passed out while cutting J's b-day cake that year and I was MISERABLE but yet, I needed to go back on the drug. No thank you.

So I dealt with the pain again and thought I was crazy. Until Sept. 2008 when the seizures started. I saw my primary doc, Dr. T, and he sent me to a GYN who would do a hysterectomy. Dr. T thought maybe I had fibromyalgia and it was worse in my pelvic area. He told me not to be surprised if once I had the surgery I began to have pain all over. Well, I did have pain all over to begin with but it was worse in my uterus! I had my surgery on Oct. 30, 2008. I missed another Halloween with the kids :( and my Peanut was so sick. I almost left the hospital because I knew something was really wrong with her... I had that Momma gut feeling and I hated being so far away from her. I was released on Sunday, took her to the doc on Monday. She had pneumonia.

Went to my post op and pathology showed I had adenomyosis. I WAS NOT CRAZY!!! I came out of the room giddy. I remember opening the door and telling Rick I wasn't crazy... there really was something wrong! I felt so vindicated. I wanted to call every GYN I ever saw to tell them. Ha ha! I was right!! But, I still had pelvic pain...

Anyhow, we moved back to SCV a few months later. Found a new doc for the family. Our new primary doc is awesome. I saw her in April 2009, once we were settled, and went over my entire history with her. She realized something that a quite a few doctors had missed. My daughter has JRA & uveitis flares. Autoimmune diseases. Oh wait... I have a sister and a cousin who also have autoimmune diseases. Hmmmm..... maybe I have an AI disease as well.....

We all now know that I do. In fact, I have 4.
I have lupus, APS, Raynaud's disease and in addition to the adeno, my pelvic pain is caused by interstitial cystitis. It's possible the Lupron triggered all this but I don't think so. I've been sick on and off for most of my life but maybe the Lupron finally triggered something in my body that made the the blood tests show that something was really wrong. I'm not happy about being sick and having to take 20 medications but now I know what's wrong. I didn't give up. I almost did and there are many times I wanted to die because I hurt so bad and no one could tell me why. I was afraid I'd never having an answer. So even with those years of being bounced from doc to doc and taking that horrible Lupron, I'm thankful. I believe the med triggered my body to start producing enough antibiodies (to myself) to show up on tests. I have to believe that Lupron did something good for me ;)


Thisismyblogname said...

Your story is the story of many with these horrible diseases. I have serum negative lupus, Rheumatoid Arthritis, deficiencies from the wahoo... 22 surgeries, precancerous cervix, partial hyst, stage 4 endometriosis... and it just goes on and on as many of us with it realize.

i take too many pills just to function and they don't take but 1/4 to 1/2 on a good day. We are a tough bunch for sure. We hold each other up in a way no others can. You did what needed done, you kept trying to find out WHY? WHen you did, same emotion... at least now you know.

Hugs to you and to your sweet baby girl!! bless her heart.

warmsocks said...

Wow! That's quite the diagnosis story. I'm so sorry to hear that it took such a long time for a doctor to figure it out.

At least with a diagnosis, we get to start treatment and get to feeling a bit better. ((hugs))