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Julie's Story

Hi, I am a 53 year old wife, mother, and "Mimi!" who is also a second grade teacher.

Like the majority of Cushing's patients it took many years to diagnose my illness. Having a thyroid condition it seems as though everything was attributed to the thyroid. The weight gain was frightening...over 100 lbs. since 2000. Each symptom was being addressed and I was just getting weaker and weaker. My body was not maintaining a normal Potassium level. Was taking 8 horse pills a day and still would not be where it was suppose to be. I started bruising very easily, and my skin was getting thinner, bleeding. Hair growth on face, the hump, and then diabetes.

Finally, my endo began testing for Cushing's..which I had never heard of before. She did all of the testing and everything pointed to a tumor. It was not seen on the CTs or MRIs so I had to have the procedure ISS. Unfortunately, we do not have Cushing's specialists here in San Antonio!

My daughter has had thyroid cancer and was being seen at Vanderbilt Medical Center in Nashville for her follow up care. Her doctor told her to get her mom up there fast to see one of the best doctors in the country. We went...and thanks be to God I was told I had a tumor in the middle of my pituitary gland after they performed the ISS there. Preparations were being made...tests, etc. pre-lab...and it was found that I had cancer. Large B Cell Lymphoma, aggressive and needed immediate treatment.

This has caused quite confusion because of having both of these life threatening diseases at one time. So, I had my tumor removed on July 31, 2007 (almost a yr.) They had to begin my chemo in four days. One of the drugs in my chemo treatments was cortisone! has been tough, and a couple of different times I wanted to hang it up...but I didn't.

My cancer is now in remission, but my ACTH levels are high. My doctor is concerned that I have persisting Cushing's disease. I will have the ACTH and 24 hr Cortisol again in about 4 weeks. I must confess...I wonder...what if?? Dr. L. spoke about possible radiation, but we really didn't discuss it too much yet. It is difficult for the doctors to know what is effects from the chemo and what might be persisting symptoms of Cushing's. Even with all of the nausea, aches, and pains, loss of appetite, I really haven't lost much weight, which is depressing.

I look forward to reading and learning more about this crazy illness. It is so great to find others who can identify with this disease and all it does to one's body. I find myself not really wanting to tell anyone much about my illness because most people have never heard of Cushing's. I'm so glad I found this place!

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