Monday, January 26, 2009

One Week

I made it through the first week. In reality it's going to get much tougher but one of my strengths is a sense of determination and perseverance.

Yesterday as I described yesterday I had the awful anxiety like sensation which was followed by pretty severe muscle aches last night. It was bearable.

Today I've experienced a deepening sense of fatigue but it's been a peaceful fatigue rather than an agitated one.

I made it out for a 12 minute slow walk absolutely delighting in the discovery of a beautiful flower or feeling moved by a stranger's sincere smile. It's the small things that give me a sense of joy. Because my pace is so slow and my fatigue so deep I was happy to stop and look at the beautiful yellow dahlia, or watch with a sense of joy at a hummingbird drinking the nectar of a flower.

I got home and felt as if I'd run six miles. I got in bed and read a bit but found it difficult to concentrate. I was so tired I finally let my eyes close. I heard the phone ring in the other room and from some far away place in my mind I thought I should get up and get that but couldn't. And I didn't care.

I spoke with my SSDI attorney today to give him my new address and let him know about Dr. Kliman's death. I asked if there were any way to speed up getting a trial date. He said there's a new law called the compassionate law that allows one to request a speedier court date but the judge who oversees that part is "bad" so he only wants to send "slam dunk" cases to that judge.

It's a crazy system. Absolutely crazy. This is the first time since I've been 16 years old where I have no income. Whenever I start I worry about it I push it away. Being on Valcyte with an illness like CFIDS is similar to being on chemotherapy. I have to avoid stress/worry, and germs. I can't be around anyone who is sick or getting sick. Rest is also a number one priority.

I do think everything will work out okay. It always has in the past. I just have to relax into that knowledge.

My doctor emailed me with the results of my CBC and CMP. Everything "looks perfectly normal" so I will continue on with the Valcyte.


Renee said...

Hope things settle down for you soon Terri. I totally understand the challenges of starting a new medication...I have not had the patience or courage to stick with some that caused me initial bad side effects. Hats off to you for your courage and determination. I am finally at that point with the Zithromax and determined to win this battle at least.
Sounds like you have had alot to deal with ~ hope you are giving yourself a warm hug and pat on the back for what you are acomplishing and how you have managed with all that you have gone through is a short time....mold meds.....etc. etc. !!!

Sue Jackson said...

Terri -

Sorry to hear you're feeling poorly, but your attitude is wonderful! That's exactly how you need to look at things to make it through this difficult time. You're absolutely right - it's so important to avoid stress and stay calm. I may be starting yet another herx, so I'll try to take your advice myself. Keep up the good work!


P.S. You saw flowers on your walk?? Lucky you! We've got snow, ice, and rain today.

chris said...

Hey - you're awesome.

cfswarrior said...

Thanks Renee! I'm trying to be gentle with myself right now. I know what you mean about being determined to win a med battle. It's hard sticking with the herxes, isn't it?

cfswarrior said...

Hi Sue-

Thanks for the advice about staying calm and stressfree. I hope your herx is a brief one. Soon you'll be free of them...

cfswarrior said...

Hi Chris-

Thanks for stopping by my blog! That was an awfully nice thing of you to say! Do you have a blog or anything?

chris said...


You're welcome! Just was reading over your posts for a bit earlier today and we need to hear things like that once in a while I think!

I have no blog or anything like that...but I will be reading all of your posts and commenting on occasion so look out for me. You're very intelligent obviously and you'll get through this. Peace.