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Off we go...



As this is my first posting, I thought perhaps a little history would be in order. Here's the 'me-in-a-nutshell' that I posted on my Facebook page:


Previous to 2002 I was the stereotypical busy Mom. I worked full-time at a job I loved, commuted 3 hours a day, tried to raise my 3 youngin's the best way I could, took care of Hubby, and spent time with friends whenever possible.


Then, in October of 2002, at age 39, everything fell apart. I was diagnosed with Polymyalgia Rheumatica and had to begin using a cane, but still managed to carry on pretty much as usual.


In the summer of 2003 I was in a bad car accident, and sustained permanent injury to my back and shoulders/neck. The blame game is still being played out by lawyers, and I hope I will receive some sort of settlement soon.


By May of 2004 I had to stop working due to the large ulcers that had developed on my legs. The doctor's exact words were, "You can keep working, or you can keep your legs, but you are not going to get to do both."


September, 2004 I nearly died from Acute Renal Failure (my kidneys shut down). The doctors told my husband that if he'd waited another half hour to call the ambulance, I wouldn't have made it. (Yikes!) After several days in ICU on dialysis, I recovered and was sent home. I had been in hospital for 10 days. The doctors were unable to figure out why this happened, or whether it could happen again.


Since then, I have been diagnosed with Empty Sella Syndrome and multiple endocrine deficiencies (which may or may not have resulted from the accident). In any case, the endocrine problems resulted in the diagnoses of Cushing's, Hypopituitarism, hypothyroidism, and quite likely HGH deficiency as well. Due to prolonged use of steroids (Prednisone) to treat the Polymyalgia Rheumatica, I have early onset Osteoporosis. The same process that leached the calcium from my bones has also caused my teeth to deteriorate, and my nails to become brittle. I have Asthma and COPD, and must use a CPAP machine when I sleep because I have severe OSA (obstructive sleep apnea). I am also chronically anemic. These combined conditions result in permanent pain (everything from the neck down), and a fatigue that cannot be put into simple terms.


At the moment, the pain is fairly well managed thanks to the wonders of modern drugs. Due to the Osteoporosis, something as simple as banging my arm on the car door could result in a fracture. A fall would be downright catastrophic. I take meds to strengthen and protect my bones, and as long as I'm careful, I'm OK. The fatigue, however, is something I struggle with on a daily basis (I have been known to sleep 18-20 hours a day).



To my fellow Cushies, I know that many of you will recognize yourself in these symptoms. I'm thinking that many things that have been compartmentalized by the doctors, may well be all attributed to the Cushings, if ever there is done sufficient research to really understand this disease.


In any event - if I must go through this, I'm so glad to have found some good folk to share the journey. After watching this site for few weeks, I know that I have found a supportive and knowledgeable group, and I'm proud to be a part of it. It is my hope that as I get to know you better - and you, me - that the circle of support will only grow wider, and stronger.


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