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Bernadette's Story...

I don't have a diagnosis yet, but I'll type my story to you. I'd like you to know about me.

About Bernadette:

I'm a 37 year old mom of two who used to be an environmental chemist, but now do reporting for a local newspaper (less hours and energy required...).

I was feeding my baby son one night about 10 years ago, when I had an unusual pain in my back. I don't know how to explain it, but I knew it was something that would cause me trouble. I prayed that God would take it away--it's easy to draw a parallel with Paul's "thorn in the side"-- and like with Paul, He didn't take it away.

A few years later, sometime in 1993, I started to feel sick, and had a multitude of tests run, gall bladder, kidney, bowel, blood, etc, etc, etc.

My doctors and, unfortunately, my family, concluded I was doing this to myself. My husband, Don, has stayed supportive, though, and has been one of the few places I can turn.

In 1995, I had what I've heard other endocrinology patients refer to as a "storm." Fever, pain, raging anxiety, rapid pulse, high blood pressure, high sugar and some other problems mild by comparison.

Again, a battery of tests--all normal, and all the wrong ones! The conclusion, nothing was wrong. A psychiatrist visited my hospital room, and wanted to put me on antianxiety drugs. I refused.

I changed PCPs and again, had more tests. No help. One morning I woke up unable to form words, near blacking out. My mother drove me to the PCP's office where I found out after a tablespoon of peanut butter and a glass of orange juice that my blood sugar was only 37! The doctor, clearly disgusted with me now, chastised me for not taking care if I knew I was prone to low blood sugar (which I never had been before) said, "Bernadette, go home and live with this."

I changed doctors again in the fall of 1996.

This doctor ran a TSH on me for the first time. (Can you believe that??) It was abnormal, I'd discover later, but since my T3 and T4 were normal, she said everything was fine. (PS always get a copy of your labwork!) She looked for other problems for a while, anemia, irritable bowel, all symptom stuff, no reasons behind the symptoms.

During this time, my periods were like hemorrhages. I saw my gyn, who said nothing was physically wrong, and it was not early menopause, and gave me some progesterone to lighten the bleeding. (I know Cushing's patients often stop having periods, but I read that anovulation in a small percentage of women can cause heavy bleeding instead of cessation of periods, so I haven't ruled it out yet ..)

By this time, I was sleeping a lot during the day, about 30 pounds heavier despite dieting, loosing hair, pretty down, still having palpitations, wounds that would not heal for months, no desire or interest in sex, leg pains, trouble walking especially after I'd sit and "tighten up for a while."

The PCP told me about the great mental health clinic the hospital had...I told her I had sought out other women with anxiety disorders--I wasn't like them. I volunteered at my kids' schools and my church, lead various groups, spoke at a number of functions, was trying to help remodel my house--if she still thought I had an anxiety disorder, to go ahead and write the referral. She didn't.

In 1997, things began to turn around. The weight came off--all but a few pounds, I felt better, looked better, I thought I had gotten better. This would last for only about 9 months.

When it ended, the pain in my back came back with a vengeance, and again the symptoms, including all the weight I had lost.

Without being able to find any help, I decided to try to find a way to manage my life so I could live with this. I spent most of 1998 like this. This mostly meant saying 'no' to things I'd normally do.

In Jan. 1999, I went to a Christian woman's conference. The whole day focused on living the abundant life, and how that was what God wanted for us. I talked with my husband afterward, and he said if I didn't soon come to this conclusion, he was going to drag me to doctor after doctor until we got some answers.

It was my gynecologist who ran a TSH (result: non-detect at .03) and told me I was hyperthyroid. My PCP ran her old T3 and T4 tests again, which came back normal, and said she wasn't going to send me to an endocrinologist.

After all the time and effort, I was still being refused!! I got my old labs, found out about the other abnormal TSH and called her back. I calmly reminded the nurse I had no relief from symptoms, and two abnormal TSH's over 3 years. I wanted that referral. I got it. (Did I tell you I hate confrontations???)

The endocrinologist (Dr. Stephan Kowalyk, Greensburg, PA) matter-of-factly said you have a thyroid problem. We spent most of last year getting my levels balanced. Christmas 1999 through about July 2000 I had another little "remission." Gosh, I looked good in my size 12s again! By August, they didn't fit. Now the 16s I broke down and bought a little while ago are already tight around the waist. I'm at my all time high at around 210-215. I have stretch marks on my abdomen, and my breast cup size is a double D on a good day. The pain in my legs at times is unbearable, as is the pain in my back. My arms and legs are weak, no stamina, if I try to balance myself on one leg or hold something even moderately heavy, I shake.

I swell, have acne outbreaks, started using depilatory cremes on my red chin, have a little hump on my back, and my face is round. I tire easy, am breathless after climbing the stairs or even an animated conversation. I desperately need, but cannot get, a good night's sleep.

If I get cold, I can't warm up, but get hot "flashes" too.

At my endo appointment in June 2001, we decided it very well may be another endocrine problem and he tested my cortisol, testosterone, and DHEA-S levels. I'm waiting on results. I'd like to share my story, since if it's not Cushing's, and I ever find out what it is, that diagnosis may help some people.

I keep telling myself, people who have a cold know they are sick without seeing a doctor: FACT: physical problems have their tell-tale symptoms.

I need to hold on to the fact that I know my body, and I know something is wrong, regardless of how many times I was told it was all imaginary.

I ask that you stand with me through my inevitable confrontations. Don't let me back down. Sometimes all I want to do is lay down and go to sleep when I have to fight.

Add me to your prayers when you think of me, for the thorn in my side and for God's grace to live with this.

Thanks,
Bernadette