Thursday, August 28, 2008

Thank You, Friends

I have been so touched and moved to tears by all of the comments I received after my last post, "Sicko." Thank you for embracing me and holding me up. My Colorado friend Ellen also wrote a beautiful response, but she wasn't able to post it and called to read it to me. I was moved to tears again.

I've made some decisions in regard to making my life a little easier. My most challenging time is the morning. I have a dog and cats that need to be fed. I need to make sure that I eat breakfast so that I don't take my 9 pills on an empty stomach. These tasks can be overwhelming for me. Alas, I cannot depend on the teen in the morning because of her late sleeping habits.

I decided to hire someone to come by our house in the morning on her way to work. She'll pick up the newspapers, feed and water the animals, make and serve breakfast and tea and make sure I have a pitcher of fresh water. I let my cleaning lady do these things for me yesterday (I usually refuse personal assistance), and it was a great relief.

When I went out to the City of Hope today, my goal was to be wheel chair free. I had it all plotted out in my mind how I would do it. But on the way to my blood draw, I had one of my dizzy spells. Luckily, my friend Mary was nearby, and I latched onto her.

A nurse came by with a wheel chair and announced to me, "You'll need to use this today." So much for being ambulatory.

Dr. Forman and I discussed the dizziness and fainting spells and how they have increased in intensity and frequency. Could it be related to low blood pressure? I now have a prescription to raise blood pressure. Could it be heart related? I have an appointment with a City of Hope cardiologist. I'm relieved to be seeing the cardiologist. I've been corresponding with a few people with eosinophillic illnesses, and they all have advised me to get an EKG because the EOS often infiltrate to the heart.

Yes, I need to raise my blood pressure. I need to gain weight. It's as though I live in the backward land of Bizarro. Let's see . . . maybe I should raise my cholesterol too. Perhaps I should take up smoking while I'm at it.


Chris said...


Have you considered getting a second opinion from another institute? You've been dealing with these problems since July and it doesn’t sound like there is much progress. Me and Ann are very, worried for you.


Chris and Ann

Susan C said...

Chris, you're right that there hasn't been much (any?) progress. I've actually thought about going to MDA for a consult because they have a lot of expertise in EOS-related illnesses. The bonus would be that I could meet up with some good folks while I was there. May even get Nancy to come along.

Mathews Family said...

I love you. I can't wait to see you. And please, let me get the papers, tea and breakfast, and tend to the animals while I'm there :) I'll even bring you fresh flowers every day. And wm is really great at giving hugs and kisses!

Nancy said...

Hey Susan, I'd love to join you on a trip to MDA. I don't know if you are fit to travel and I'm still not 100% recovered from the pneumonia. I think I better wait a bit. sorry.....

Please take care of yourself. Has Dr. Forman tried to hospitalize you? Or have you rejected the idea?

By the way, the pecan sticky rolls sound absolutely heavenly. Also, how low IS your blood pressure?