Thursday, June 5, 2008

Dealing with the Grief of Cushing's

** After writing this post, I found a wonderful collection of articles regarding Coping with Cushing's. I am a work-in-progress, and this gives me a good path to get there.


I am very sensitive to anyone thinking I am pessimistic about my situation. Understand that Cushing's disease causes depression and anxiety which leads isolation and muddled-thinking (I'm sure I've posted about somewhere on this blog).

I am committed to fighting and getting through this, for both myself, my husband, and my family.


Sometimes I'm amazed when I look in the mirror and wonder who that person is. Even as I try very hard to be forgiving and accepting of my condition, it is difficult when the main symptom of weight gain is so easily criticized by our society.

I have never been bound by what I could not do before.
Now, with this disease, I feel I am.
I am uncomfortable in this skin.
It doesn't fit.

I do not like saying I can't do something on my own.
I do not like saying I need help.
I do not like always wondering if I can.

I miss knowing that I always could.

I try hard not to engage in negative thinking, and most days, I do not. On some days, I feel like my life is in a holding pattern. I am not the same person I once was. I can’t do what I used to be able to do. Some days, I find it difficult to ignore the facts.

1) I can't think like I used to. I am easily confused and overwhelmed.

2) I can't do like I used to. My body aches, I have no stamina, and yet life piles lots of work on me every day. Despite my illness, I feel compelled to keep up with it all.

3) I can't work like I used to. I have no way of knowing how I will feel from day to day. I can't stand longer than 20 to 30 minutes at a time. I can't walk great distances any more. I feel like what's left of a working mind is trapped in a unable body. I feel like my work was interrupted, and I miss feeling purpose in my day. I miss feeling like I am a part of something bigger than me, and I miss my work in politics a great deal.

4) I can't be upbeat like I used to. Pituitary tumors cause depression, isolation, and anxiety. This is when the above problems seem so insurmountable to me. I cry a lot these days.

I have been living with this disease long enough to know to just wait it out. A new day will dawn, and my outlook on life will again turn more favorable.

I don't really like to look behind me too long, so I am going to try to feel the feelings and move on. I feel very protective of myself right now.

Upon quick thought, I am reminded many very good indicators that my life is still quite good:

  • I have a husband who loves me and promises to stay at my side. I couldn't ask for anything more.
  • We are expecting our first child, and being a mother has always been important to me.
  • We recently returned home to Houston to be closer to family. I am happy to have them so near to me.

And on days when I feel like my old self, I prefer to think of this disease as building something in myself that needed to happen…

  • perhaps more self-awareness
  • perhaps more appreciation
  • perhaps more compassion

I hope to get back to a place where I feel like I can accomplish anything I put my mind to. In the mean time, I know I must do my best at the following things:

  • I must try to make the most of my situation.
  • I must always try to live in the present.
  • I have to believe that my life has a greater purpose than what was previously revealed to me.
  • I must follow this path to see where it takes me.
  • I must remind myself that no one gets any guarantees in this life—health- or otherwise.
  • I must continue to build a life that fulfills me while doing good for my fellow citizens of the planet.

I know there are people who have less and need much more.
I have spent my adult life serving as an advocate for them.

However, in order to tell of my triumphs with Cushing's, I must also honestly disclose my struggles. I have no intention of my story ending in a low point. I plan on winning this war and helping others along the way.

Even on my bad days, I know what is possible for me. I know what I have vowed to do.

Even on bad days, I remain undeterred and committed to bringing more awareness to the plight of patients with Cushing's disease.



I am feeling OK. I am living with my symptoms.

While I spend good days desperately wanting to spend time with old friends, I am quickly reminded on a bad day why my body and mind just don't agree with my sentiment. I end up having to cancel a lot. I end up looking and feeling like a flake. I hate that. So, I have just learned not to make too many plans.

These feelings are also explained by my Cushing's and pituitary tumor. I have low IGF-1 on at least five tests in the past year. What does that mean?

In adults, abnormally low levels of GH and/or IGF-1 may cause subtle, nonspecific symptoms such as:

· Decreased bone density
· Fatigue
· Adverse lipid changes
· Reduced exercise tolerance.

My low IGF-1 test results suggest that the symptoms in the below survey are impacting me, too. In my case, my pituitary tumors that are secreting ACTH are also disrupting the normal hormone production patterns of the pituitary. Growth hormone, as I said earlier, is just one of the pituitary hormones.

Growth hormone deficiency in Adults

  • I have to struggle to finish things
  • I feel like I've got to sleep during the day
  • I feel lonely even when I am with other people
  • I have to read things several times before they sink in
  • It is hard for me to make friends
  • It takes a lot of effort for me to do even the simplest jobs
  • I have trouble controlling my emotions
  • I often lose my train of thought
  • I lack confidence
  • I've got to push myself to do things
  • I often feel very tense
  • I feel like I let people down
  • I find it hard to mix with people
  • I feel exhausted even when I haven't done anything
  • There are times when I feel very low
  • I avoid any responsibilities
  • I avoid socializing with people I don't know well
  • I feel like I'm a burden
  • I often forget what people say to me
  • I find it hard to plan ahead
  • I am easily irritated by people
  • I often feel too tired to do the things I have to do
  • I have to force myself to do everything that has to be done
  • I often have to force myself to stay awake
  • I have trouble remembering things

Many of you may read this list and say, “That doesn’t sound like the Melissa I know at all.”

Two years ago, I would totally agree.

Now—and for a while now—it all is true for me.

However, I know, that this is not the person I am, just the person I am with Cushing’s disease.

Some days it is hard to tell where one Melissa starts and the other one ends. Those days are the toughest, because in my mind, I think like you… that I am fine. Yet this disease quickly reminds me of my limitations and I remember that the other Melissa seems world’s away now.

At the end of it all, I know that this is my new path in life. And I look forward to helping people along the way, and advocating for better healthcare and Cushing's awareness when I am well again.

Then you will see that Melissa that many of you already know.
That's when I will see more of that Melissa that I ever knew was possible!