Wednesday, October 04, 2006


Another Cushing's patient says it better than I can. I'm fully going to blame the tumors for this, as I used to be an honor student with one horribly disgraceful B+ in elementary school. My vocabulary has eroded over the years, my grammar slipping and sentence structure crumbling with poor punctuation, and intervals spaced with periods that would make my public relation's writer mother-in-law have a grand mal seizure.

I digress. A post on being hijacked by this disease, doctor name abbreviations changed to protect the innocent ;):

"....I sorted through old photos to take with me to my initial apt with Dr. X. There are not many pictures of me during the last 6-8 years, but a few. It was sad, yet confirming to see the pictures of what I looked like before Cushings hijacked my body. I had one of those pictures on my desk because I wanted to keep it in front of me to remind me of what I will someday look like again....or at least reasonably resemble! My best friend for the past 8 years, said "who is this"? I thought she was joking, but then quickly realized she wasn't....that's when I knew how drastic the change had been on my appearance and how easily & naturally I still thought about myself the way I was BC.....(before cushings).

Little did I know that there would be another opportunity to be "gutted" when I took all the pictures I collected to my first apt with Dr. X a couple of weeks ago and heard him say repeatedly, "is this one you"? AHHHHHHHHH...that hurt!! I wanted to scream, "...OF COURSE THAT'S ME....ARE YOU BLIND? HOW CAN YOU NOT TELL IT'S ME?" Then I heard the comment, "yes, I can see there's been a dramatic change."

I have found not being recognized is more hurtful than being glared at by other women in public. It felt like not being acknowledged.........not being recognized felt like the person I loved had died and others had forgotten. How could my self-image be so tied to my appearance? In some ways I think I've learned that there's a part of me that refuses to let cushings move in and become a permanent part of my life. It's not me. It's a temporary intruder that has cleverly snuck in to my life and made it's presence known so slowly that others do not realize I've been taken hostage.....that I need help.

I used to trust doctors to do what was in my best interest. When I lost that trust, I began to trust in the medical tests despite the competence or disposition of a doctor. Now I've even come to realize the variables that impact and can skew tests.....didn't put the purple tubes for ACTH on ice fast enough, didn't spin it soon enough, forgot to send the right paperwork for me with the samples....then I learn that the test results may not reflect my condition because my body is producing the hormones on a cyclical basis. So, I have learned to trust myself above all others and above the science behind the tests.

I've listened to 5 endos at highly ranked facility tell me nothing was wrong, I should see a psychiatrist, stop eating so much, exercise vigorously,....yet knowing in my heart they were wrong even if I was too exhausted and weak to speak up for myself.

Then I learned to go into a doc's apt with a plan, just like a business meeting....."what do I want to walk out of here with?" is the question I asked myself. I learned what kind of information to share, what to leave out as I grew confident of what information was relevant and how to "tell my story" in a concise, factual manner. I developed my own "dog & pony show" as we call it in my company, complete with charts, pictures and a rehearsed speech. I learned how to "fail fast" in my relationships with doctors as my ability to sense their level of comfort and competence.

I have grown in ways I never expected or intended. I often wonder if I'll ever need to fight like this again. I question what the "life lessons" are that I'm supposed to be I don't enjoy repeating painful lessons. smile.gif I feel like I've had to endure "Olympic style" training in order to physically and mentally survive, yet what is the purpose of these skills once I'm on the other side of this fight?

Will I ever be "nice" again? Will I be able to trust others with my well being? It's brought out an ugliness in me that I don't like. I don't like having to use my energy to pound on others to send me copies of my test results, make sure the insurance company pays for my benefits, assert myself with office staff to make my next doctors apt soon because I'm an emergency!

This disease has not only stolen my appearance, but held me at gunpoint to be fighting for myself on all fronts. I don't like fighting, pushing, raising my voice so I can be heard by doctors that are lending a deaf ear to my cry for help. It's hard enough being sick and it's not in my nature to be pushing all the time. I want to be the peace-maker, nurturer, the one with the infectious laugh that brightens other peoples day....that leaves them feeling better than they did when they came in. It seems like a luxury now.....and one I will not take for granted again."

Oh, all of that hits home with me. I am living it. One day I hope to write a manual, or at least a pamphlet, to help other people with rare or hard to diagnose diseases navigate the medical system.

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