Part 3 of 3- People Say the Darndest Things

Cushings Disease is a rare disorder. According to statistics, 2 to 3 cases per million are reported each year. On the average it takes a patient 2-5 years to get a confirmed diagnoses. Becuase Cushings is so rare, most doctors will never see a case of Cushings in their entire career. Test results are not always black and white. The emotional effects of having a chronic disease are distressing and demoralizing. The problem- as you get sicker and sicker, and you explain these symptoms to your doctor, you are dismissed as a hypochondriac who needs to exercise more. In this post I have included actual quotes from my doctors. Some of them I wish I could but their names in BIG letters next to the quote. BUT- I actually do not put blame, or hold resentment for those who dismissed my symptoms or made me feel crazy. They learned from my case and hopefully, it will prevent it from happening to anyone else. Instead- I hope if they are ever faced with someone like me(is that possible?) they remember my case. I was not a black and white case.

The following are some quotes:

"...of course, she has read everything on the internet, and decided she has Cushings Disease..."May 19, 2007

The same doctor-"...she needs to put some focus into the appropriate diet and exercise, obviously..."

"...If she could lose some weight, I think that would probabaly be a boost to her mood..." July 24, 2007

"I had a long discussion with Mrs. Kahl and her husband. She continues to be very distressed by her symptoms...she has been unresponsive to multiple treatments with various antideppressent medications. The biochemistry is unusual in that her ACTH is presistently elevated. Her cortisol levels are lowish and mostly supressible but do not suppress to zero. I informed her that the likelyhood that her symptoms were realted to cushings syndrome is low-probably less than 15-25% and therefore surgery on the pituitary to remove the adenoma would not be exspected to cure her symptoms. She is quite persistent however and would like to visit with a surgeon to consider that option.

THE SAME DOCTOR AFTER MY SURGEY. THIS WAS AFTER MY FOLLOW UP IN JULY OF 2008....

"...Mrs Kahl had surgery by Dr._____ on April of this year for a pituitary adenoma causing Cushings Disease. The pathology was positive for a ACTH staining adenoma. Her pre surgical biochemical testing was a bit misleading, but her course since then has been very indicitive of resolving Cushings Disease..."

After my surgey and during the recovery process, I was mad at this particular doctor, He told me I was overweight, depressed, he ABSOLUTELY did not believe me. Before this follow up visit I kept imagining our meeting when he actually SAW me. Remember- between April of 2008-July of 2008 -60 of the 75 punds were gone. It was kind of just sucked away. After surgery it was like someone put a pin in me and I was deflated. And I was happy- life was good- I FELT good for the first time in a LONG time! There was no diet, no exercise involved. Walking into the room, I felt vindicated and I was going to tell him so. When I looked at him and he at me, i know we could both TELL what each other was thinking. ME- Look at me!! Look at me!!!! I am down FIVE SIZES since our last meeting, Wait look at Me closer. I deflated. I'm sorry, did you say I don't have Cushings Disease..." DOCTOR- I should not say anything to this crazy woman, let her take the lead- Oh No her husband looks mad- I hope her husband doesn't punch me in the face.. Where are those kids, they always bring their kids...this is not good." The kids are waiting out in the hallway until their daddy punches me. Breathe..."

All joking aside- I really saw in my doctors face he felt bad. As a docotr they should not and won't admit wrongs. Anyway- he is human- he makes mistakes and like he said, I was not the typical case. I do not blame anyone. As a matter of fact, I still pray everynight for my doctors there. I pray that they have the strength to see each new case as an individual to learn from past cases and move on. and I hope, on occassion, like when there is someone who DOESN'T present in black and white, that they think of my case. Done. Time to move on! I keep moving forward, there is no time for ill feelings.

And then it came- two weeks later- The letter from the Mayo Clinic which said:

Our final diagnoses is

> Cushings Disease

And I said "AMEN!!!!!!!"