Friday, September 25, 2009

Feeling Low Again

PLEASE PRAY!! I haven't blogged about this in a while because my Addison's Disease was under control. However...

In July of 2008, I caught a cold that my defenses couldn't fight. During the course of 10 days and NUMEROUS blood tests to determine what I was really fighting, I ran a low-grade fever, slept 20 hours of every 24, couldn't mentally think enough to just lay in bed and read, flipped channels, and felt like my head was a bowling ball ready to roll off of my head at any moment. At the end of those 10 days with no diagnosis and no change in the symptoms, the doctor at the language school where we were attending in Costa Rica, placed me in the hospital. It was there where after having a clue from my grandfather through my father, the doctors, including an endocrynologist, ran LOTS of tests. They determined that I had Addison's Disease.

Addison's is an autoimmune disease that basically means that the Adreanal Glands have shut down and have stopped or nearly stopped producing cortisol. SO WHAT?? Well, Cortisol gives ones body the energy to run, including your heart, lungs, and other vital organs. So what the doctors in Costa Rica surmised was that during those previous 10 days of a bad cold, my body had to virtually stop flowing energy to the "non-important" organs, in order to fight the cold. In other words, my adreanal glands weren't producing enough cortisol or energy to run my body as normal, AND fight off the common cold. Therefore it had to divert all energy it could muster to keep my body functioning, albeit at it's lowest possible level. That's why I couldn't even think well or concentrate on reading, and had to sleep virtually all the time, because my energy was diverted elsewhere.

After the diagnosis, I began taking 2 different types of medication. It took a while to build up in my system, but after a while, I got my normal energy level back. We went back to the US for 2 months on our "mini-furlough." I was fine during all of this time. I had noticed over 15 pounds of weight gain, but knew that in taking steroids that this would happen.

Once arriving in Chile, I met with another endocynologist at Clinica Las Condes, which is associated with John's Hopkins in the states, so it is arguably the best hospital here in Chile. There my doctor decided that he had doubts about my diagnosis and began running tests. I have no problem with the tests or being a guinea pig of sorts, but it's been almost 6 months now, and I'm getting tired!

We began by lowering one type of medication. Once I was completely off of that one, I crashed with little to no energy. Then he put me back on it. He then ran other tests. Now we are lowering my cortisol intake each day. I'm currently at half of the dosis that I took when I was home just 8 months ago. Next Thursday, I begin taking 1/4 of the dosis and then another test. A few days ago, I began crashing. This means that I wake up feeling EXHAUSTED and that all I want to do is sleep. This means that I have to support my head often whether with my hands, a pillow, or even the wall in church. Trying to function this way is virtually impossible being a wife, mother, and missionary.

Honesty, I want to end up back in the hospital, so that the doctors here can have no doubts about the diagnosis and/or if it's not Addison's Disease then they can determine what it really is.
Please pray for me to make it through the next 2 weeks before I have the next set of blood tests and that by lowering the medication dosis again next week, that I can still fulfill what GOD wants me to do.

1 comment:

David Denise said...

Hello,

I was diagnosed with Addison's in April 2009 and have a very similar story as yours - NO energy, illnesses that wouldn't go away, my skin also got very pigmented.

I'm surprised that tests are taking so long, my diagnosis seemed pretty straightforward - an ACTH Stimulation Test, cortisol and ACTH levels tests, and a test for auto-antibodies.

My Cortisol came back lower than normal, my ACTH was close to 100x normal, I did not respond to the ACTH stim test, and I was producing antibodies to my adrenal glands.

All this makes a pretty strong case for the cause of my problem.

If you have not had all of these tests done, I would ask your doctor about them.

I have also found that the Addison's group on facebook has been really helpful. I get more info from the group than from my doctor (most doctors only know the textbook information, not the "how to live with addison's" information).

In case your blog doesn't allow links, the name of the group is: "Yes, I have Addison's Disease. No, it's not contagious", the link is: http://www.facebook.com/home.php#/group.php?gid=2439697876.