Being diagnosed with Adrenal Insufficiency is a life altering experience. AI is a rare illness and despite the efforts of many Endocrinologists, many who suffer from the illness suffer day in, day out. Much more work needs to be done in terms of raising awareness for the illness and much more research needs to be conducted to help improve treatment.
When I began “The Adrenal Diaries“, a “Special Feature” on daysinbed.com, I wanted to share my own experiences, which is something I still plan to do, however, I also want to share the experiences of other’s living around the world with this dreaded disease.
Today I am sharing (with permission) a story of diagnosis and struggle, written by Jill Smith of Denver, Colorado. Jill is currently 54 years old.
I’d like to say a huge thank you to Jill, for giving me permission to share her story of diagnosis and I hope it informs non sufferers out in the world and helps other’s out there, living with the illness to feel supported through reading about this experience.
Jill’s Story- From Cushings Syndrome to Adrenal Insufficiency
Where do I start, how about 19 years ago. After having my 3rd child, a daughter, I found that I was gaining a lot of weight and not feeling quite right. I always was the thinnest of all my friends so I visited my internal medicine doc and found that I had high blood pressure that now I would have to take meds to lower my pressure.
Each day I would feel very tired, and not myself. Life went on with all it’s trials and tribulations until I was taking sick time from work on a regular basis, about once or twice per month. In September of 2006, I was home sicker than I had ever been and watching the Discovery Channel. They had a story of a lady who had gone through everything medically that I had been going through. All my symptoms !!! I was an inch from the tv when she said the name of the disease that had all but crippled me over the years – Cushing’s Disease.
I was crying as I watched and immediately called my doctor. 2 days later I was in my docs office and asked if she would check my cortisol level. She said yes and 2 days later she called and said I need to go see an endocrinologist, Dr. Robert Rees-Jones.
On October 4, 2006, I was diagnosed with Cushing’s Syndrome. I needed to have my adrenals removed. Well not so easy. I had numerous tumors in each of my adrenal glands. I had to have a vein catherization and found that my left adrenal was the cause of all my suffering.
On November 15, 2006 I had my left adrenal gland removed. It was a very difficult surgery and a long recouperation. During this time, my job fired me, I had to move out of my apartment, I had to have my kids live with friends, I had to give up my 2 cats, and since I drove a company car, I had to give it back.
I went to live with my Aunt and started to feel better until one day, I felt worse and knew the other adrenal was causing trouble inside of me. It took another year of suffering before my endo would remove my right adrenal in February 15, 2008. After my surgery, I went to live with my best friend and her family. I was not feeling well and on March 4, 2008, I was laying in my bed and could not move my arms or my legs.
I was paralysed. On this day my friend was gone all day long. I could see my cell phone but was not able to pick it up. I lay there crying until I heard the garage door open and I thought oh finally she is home. I could not hardly speak at this time and she finally came to my room to talk see me and called 911 immediately. She could see I was in really bad shape. Paramedics got there immediatley and rushed me to the ER.
I felt like I was in a movie, all the nurses and docs came out to the ambulance and swarmed me, questions, needles, blood pressure. Finaly they told me that my Potassium was at 10. They kept saying that no one lives with a Potassium of 10, yet here I was alive. I had to have dialysis as my kidneys had failed. I was in the hospital for 24 days. No one knew why this happened to me but it happened 2 more times, once in July and once in August. I had dialysis 5 times in total and I crashed twice the last time.
I have had numerous other adrenal crisis. My last one in March 2015, was a very difficult one. I was found semiconscious in my home. I had lost all memories not even remembering my children. It took a week for my memories to come back. I had hallucinations as well.
I am still sick and now that I have to take hydrocortisone for the rest of my life, it has been very difficult to regulate me to a normal dose. I don’t know what the future holds for me. I feel that I am in a hole and trying to crawl up the muddy sides to reach the light at the end of my tunnel. I hope someday I will wake up and say, its a good day today!
54 years old
If you would like to share your diagnosis story or in fact any story about your experience with Adrenal Insufficiency and or Addison’s Disease please do not hesitate to email me at firstname.lastname@example.org.
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Angela Milnes xx