Pay No Attention to the Girl Behind the Smile

I thank Christine for highlighting the struggle folks with chronic diseases face each day. Frankly, it's why I choose to stay home most of the time.

Pay no attention to the girl behind the smile (full article).
Article written by Christine Miserandino, © butyoudontlooksick.com


What can I say, It is the “secret society of the sick” and I am proud--but not lucky to be a--member.

I hate having to defend that I am a good mother, wife, daughter, sister, or friend.

It is a dizzying, exhausting dance to be two different people. I guess I have grown up a bit. I quite simply do not have the desire to act anymore for you. This is who I am. Good days and bad. Sometimes, there will be days where I am the funny, cute girl that you just can’t believe is sick. Then another day or week later- I may be that really sick girl who used to be funny. It’s all when you catch me.

I am doing my best.

There are so many things I wish people knew about me but I won’t say, because you don’t ask; and when you do, you’re not truly listening.

Pay no attention to the girl behind the smile.

DEPRESSED: Withdrawal from steroid cortisol replacement

My body is not making any cortisol on its own. Cushing's disease made my hypothalamus-pituitary-adrenal axis off kilter. Now, I am taking steroid hormone replacement in pill form--hydrocortisone--to restore the proper amount of cortisol my body stopped making once the benign pituitary ACTH-secreting tumor was removed.

I have been feeling all of the expected symptoms that are related to dropping my dose of hydrocortisone weekly.

* severe fatigue
* dizziness
* nausea
* headache
* joint aches
* back aches
* depression

Lying down and closing my eyes gets me through the first three. Darvocet, my pain killer friend, gets me through the aching pain. The last one bothers me more than the others. Even taking 200 mg of Sertaline/Zoloft, an antidepressant, doesn't help me combat the depression brought on by low cortisone. Even a friend said she couldn't cry at all on 100 mg--it helped her that much. I'm on double and it's like I'm not on anything.

This got me thinking of the mind bender that is as debatable as the Chicken v. Egg case.

If a tree falls in the forest and no one is around to hear it, does it make a sound?

I am wondering if the same is true about me and my recovery.

It is day 24 after pituitary brain surgery.
Yes, they went through a natural orifice to access the part that hangs from the brain. The docs didn't do a craniotomy. They did not shave my head, and I did not lose my hair. For that, I'm thankful. However, they did get pretty darn close to my brain... like a centimeter or so. They gave it a little tickle. I've never liked being tickled.

So, I must ask:

If a Cushing's patient struggles after surgery and no one asks her how she is doing, is she really even sick?

~ Cushie Melissa

P.S. I admit a large degree of self-pity in this post. I feel needy and disappointed and unaccomplished and helpless. I am really even reluctant to post this now, and you may come back later and this post will be gone. If I can publically confess and own my uncomfortable feelings of being a weak, sick patient, then this post will remain here for others to read.

I post my true feelings because that is what I promised myself I would do. Strong or weak. Good or bad. Happy or sad.

I want to show those fighting with Cushing's that coping with this "rare" disease is difficult. People do not understand. It is not just you, your family, your friends. It happens to all of us. I understand.

So let's know that this is the case.
Let's keep moving ourselves forward.
It makes no sense to wallow.
I hate to wallow.
I do wallow, but I don't like to.
When I get sick of myself, I stop.
Like now.
I'm done.
Happy birthday, America.

:)