Wednesday, August 6, 2008

Cushing's Messes with Your Mind!

Recently I was talking to a friend from the Cushing's boards ( and we were discussing how people without Cushing's don't understand what we are going through. Even the wonderful (but rare) doctors who help us don't seem to understand that we need to feel better as quickly as possible. Cushing's messes with your body, and everyone can see that. But more than that, Cushing's often messes with your mind in ways that you can't feel comfortable discussing with other people.

If your loved ones are not particularly supportive, then you might be accused of being a hypochondriac. Friends may tell you that you are just starting menopause and they know so-and-so, and she gained 100 pounds when she went through menopause. You will hear that you need to stop thinking about it, think positive, don't go on the internet because you are just making things worse. Take some herbs, go for a walk, get a hobby! None of these things help one iota in making us feel better.

My family was supportive. (My husband achieved sainthood in my eyes during this ordeal.) My friends tried to be supportive, but sometimes looked at me like I was a crazy wench speaking an unknown language. My one sister kept giving me diet advice and telling me nothing was wrong with me at first, but she got over that once I got some high test results and a visible tumor on MRI. Both my sisters were terribly worried about me and called me often to check on me....did I get any tests back?...were they high?....why don't they DO something to help you?! I have to admit that as much as I love my sisters, I often didn't answer my phone to go through all of that again. It was terribly stressful waiting to get those test results back and I just didn't want to talk to anyone. At work, I took an obscure route to my work area, kept my head down and worked, then took the same route out of the building once I was pretty sure everyone else had gone for the day. It was awful to be walking around in this body, sick and unrecognizable, and on top of all of that there was shame. I felt very ashamed of the way I looked. My mental state was not good. If it were not for the other Cushing's patients I got to know through the boards, I really don't think I would have gotten through it. They were the only ones who really understood what it was like, the only ones I knew didn't think I was a psych case.

Shortly before I finally got to surgery, I began to think of a gun my husband and I own for protection. I would see myself going to get this gun. I couldn't get it out of my mind for a few weeks. I never pictured myself shooting myself, but I did feel it was dangerous for me to have that gun around. I kept thinking I need to tell DH to hide the gun from me. I finally spoke to another friend who was suffering with Cushing's and she said "Mary, if you were going to do it, you wouldn't use a gun. I have enough drugs to kill an elephant here at my house and I imagine you do, too." And she was right, of course! I had plenty of drugs and never thought about taking all of them. Eventually I was able to put the gun out of my mind.

I'm telling you, Cushing's messes with your mind. Some are affected more mentally than physically, but I believe all are affected mentally to some degree. The moment I came out from under anesthesia after surgery, I felt that a black cloud had been lifted and the sun was shining again. What a relief! That is not to say my entire recovery was sunshine and rainbows, but it was still so much better than being sick and depressed and apathetic constantly. I felt normal again!

I wish doctors would 'get' this disease. I wish they would realize that they are contributing to our depression by disbelieving us and not helping us when we are so obviously sick. To be so weak and fatigued that you can barely brush your hair, and then to have a doctor telling you that you should be lifting weights....right after you've told him you can barely brush your hair....well, it is frustrating at the very least.

I still owe that doctor a letter.

Monday, August 4, 2008

Beauty and the Beast, Cushing's

Beauty has meant different things to different people through the ages. The plump Rubinesque models of the olden days were considered gorgeous in their day. Women who look like that today are met with looks of scorn and possible ridicule. That bitch Twiggy came along in the 60's and ruined it for all of us women who have curves. Now if we don't look like we are on Death's Door, we do not meet the modern definition of beautiful.

I have never been beautiful. But I used to be attractive. I was thin back then. I ate a low fat diet and walked 3 miles a day and felt really good. I could go into a store and buy a size 5 and it fit, no need to try it on. If I lost a few pounds, a 3 would fit. And for a little while, I could wear a 2. All through my 30's, life was good.

At the end of my 30' age 39, my periods stopped and I started gaining weight. My digestive system started going whacky. I thought something was wrong, but all my doctors said was Well, you ARE getting older..hehe! Yeah, real funny. That was the beginning of my Cushing's, I am quite sure. Doctors not only didn't help me, they more or less laughed about my "problem". Well, you are getting older lady, get used to it! It took nearly 12 years to figure out that I had cyclical Cushing's and to get the treatment that would help me feel like myself again. Don't get me wrong, I am not thin. But I've lost right around 54 pounds now and I can breathe again, and don't have panic attacks, ever since my pituitary surgery. I could go on and on....I can go shopping, I am not being a recluse, everything is better. Is it perfect? Did I regain the body I had at age 39? NO!!! (Damn it!) I am living with the aftermath of Cushing's and don't believe my physical appearance will ever be what it used to be. Cushing's ravaged my skin, it is not taut or fresh. There are broken capillaries and my muscles are still not back to what they used to be. I have hanging skin. Not pretty. When I look into the mirror, I do see a glimpse of my old self, but for a long time I did not recognize that creature looking back at me at all.

I always wanted to be beautiful. I had 2 older sisters I thought were beautiful and I wanted to be just like them. The funny thing is that I do look very much like them, but never realized it. But now I look at pictures and say Is that me or Pat? and nobody can tell the difference.

When I was about 45, I had cosmetic surgery. (My husband and my older sister were both opposed to this, by the way. I told them I was doing it so that I could feel better about myself and they didn't argue.) I had a lower eyelid lift, liposuction under my chin, and permanent filler put in the nasal-labial fold. I was happy with the eyelid lift and lipo, the filler has not met my expectations, but what's done is done. Looking back, I believe that the rapid aging I saw around that time was from my hormonal condition. I also believe this surgery delayed my diagnosis. I didn't "look" Cushie, so doctors didn't take me seriously. But again, what's done is done. No regrets!

Recently I've been having to work at losing weight again. It's a constant struggle. And now, I've started thinking about all the time I've spent pursuing beauty. I feel I've wasted years doing this. I am now a round peg and I want to fit into that square hole, and it's just not happening for me. And then I hear Oprah has recently had the same sort of thoughts and she said something that I know is true. She said "I am not my body." How simple that is!!! And how profound.
The thing is though - other people cannot see the real us. Our first impressions are made through visuals. And as much as we think we are not judgemental, we all are. If I see a man walking around with socks and flip-flops, I immediately think "Fudgie". Now, you'd have to live in northern Michigan to understand that reference, but I would almost bet that all of my neighbors would jump to that same conclusion.

What I am trying to say is that I really am not my body. You are not your body. We are spirits trapped inside the vessels we were given to live our lives. Some of the most beautiful people I know do not have beautiful vessels by society's standards. It's taken me over 50 years to realize all of this. I'd like to think that I won't obsess over my weight anymore after this realization.

But that's not likely. I still fix my hair, get manicures and care about what I wear. If all of this is not important, why do I still care?