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RACHEL'S STORY It's taken me a long time to write this story, but it was a promise I made to Dianne, so now that you've got my eyes, you may as well know the person behind them... I'm a 48 year old woman, born and raised in California, with all its diversity...and perversity, I might add. I grew up in Southern California, had various jobs, got married and divorced...never had children...left town in 1973, moving to my beloved Humboldt County, in Northern California, settled in a small town called Blue Lake, and attended Humboldt State University. It took me years, but I finally graduated and got my BSN, in nursing in 1978. My life in hospitals began during my nursing training when I worked as a Nurse Aide in 1975. It didn't end until Feb. 1996. That's 21 years of back-breaking service! And I did some pretty hard time working for 8 years in Intensive Care, 7 years in Emergency, a few years in medical/surgical units, burn units, OB/GYN units, and work with substance abusers and recovery and detox...I was a seeker of adventure and an adrenalin junkie. I loved the excitement and unpredictability, but it inevitably took its toll on me psychically/emotionally and mentally...and I became a victim of "burn-out". I needed to change, and change is what I got! It's funny how the body tells us things when our minds don't really want to pay attention. First I suffered a serious femur fracture on Christmas Eve, 1993, which put me in the hospital for 11 days, required 3 operations and lots of hardware, and I was wheel chair bound for 1 year. I managed to get back to my job, which at the time was in recovery work (appropriately...), only to be down-sized out of my position. I finally took the plunge and went to work with the Humboldt County Public Health Department, working with California Children Services, as a Public Health Nurse and CCS Nurse Consultant, in Feb. 1996. Lots of transition and many changes were to occur and I had a huge challenge ahead to learn this new job and my new role. It's not so easy to go through these changes at my age as it was when I was in my 20's and 30's, but life and changes keep happening so you've got to flow with it. Next came menopause and the beginning of hormone replacement therapy. I found I couldn't grasp a lot of the concepts and regulations in my new life. I became emotionally reactive to the stress. I started with tremors and dismissed them as related to all the changes. I had had eye problems for a year already...weird bouts with redness, swelling and pain refractory to most treatments, but episodic....I noticed irregular heart rate and rapid heart rate...and I was HOT all the time. Denial continued until I was in the middle of a HIV conference this past June. I was so hot, my heart was racing, my anxiety was intense, so I sought medical attention at last, went to a clinic and basically diagnosed myself, requested a thyroid panel, some Inderal and Ativan, and saw the doc a week later for results and was given the news that I probably had Grave's disease. The nuclear scan confirmed the diagnosis, I was a complete wreck by then...couldn't hold a thought for more than a few seconds...I felt like a hamster in a wheel just spinning furiously and going absolutely nowhere. I hated feeling so out of control, but I was and it only got worse. I took my dose of the "atomic cocktail" on June 28th, 1996. During the 6 weeks that followed, my eyes went bonkers and the the left one bulged, the right one drooped. They hurt all the time...I was obsessed with how I looked and tended to isolate myself and avoid people and eye contact. I couldn't work...And I was an emotional basket case crying all the time. It was during this time I found the Internet support group for other's like myself afflicted with this multi-faceted illness. And I made some life-long contacts with some in the group who got me through the hard times, and continue to help with the aftermath. I found myself facing the ignorance of the medical profession with regards to Grave's disease. My doctor just cut me loose during my most critical period, because I wanted to see an endocrinologist. I had no one until a week before that appointment when I finally got my own labs, called the results to him personally and demanded he prescribe for me immediately as my TSH was next to nothing and my T4 was high. I had been in the pit of despair and a big black hole of depression for much too long already, so I felt mentally and emotionally compromised at the time, but I knew my stuff and I had to get marginally aggressive to get this non-responsive, inattentive, unsympathetic MCP to prescribe for me. Needless to say, I sought out a new doctor that same day, and I found a woman who is wonderful. The next week I saw the endo, another woman, and I began to turn this around....with the help of thyroid replacement therapy. By this time, I was addicted to the Ativan, thanks to Mr. Wonderful Doc...NOT! So began my tedious process of weaning off that drug. I did like that Ativan...too much, I guess. My confidence in myself suffered a lot during this period of disability and being off duty, but I returned to my position in October. Been working full time ever since and am feeling more and more like myself these days. My thyroid dose has been adjusted between .1mg to .125 mg daily, and my labs have been OK. My muscles really ache, especially in my arms...I still tend to run hot...the shakes come on when I get overly tired or worked up, and I get scared the I might have a reoccurrence, but so far so good. It's one day at a time. My biggest problems are my eyes and weight control. My energy isn't what it once was...neither is my libido...But my partner of the last 7 years, Ernie is very loving and patient with me for the most part. We've been through a lot in a short time. He is a recovering alcoholic who hasn't had any alcohol for over 6 years now...no cigarettes for over 1 year...We still have a bad habit or 2...but who doesn't? We live with our dogs...4 of them...all Pomeranians...Punk, Patches, Mr. Little, and Audi...(all related) I've been breeding them for years but those days are over as we just got her fixed. No more puppies...:0(...but no more housebreaking:0). I also have 3 cats. We live in a beautiful Redwood Valley near the Mad River (aptly named...)...I'd welcome visitors, especially you, Dianne. Thanks for all you've done...all you do...and please take care of yourselves...This is a very weird disease, but it does get better...Keep talking on the bulletin board and venting...It really does save your sanity. I will update my story over time. By the way, the eyes did recede after some months. I pray for no major flare-ups, but I know there's no guarantee. Keep praying, too. Love, Rachel
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