Thursday, November 19, 2009

Georgetown CFS Study: Still in DC

To my readers: Thank you for the continued comments on my Georgetown posts. Even those of you not leaving comments, I appreciate your sending healthy thoughts my way. You have given me great moral support. I promise I will respond to comments when I get the mental energy, so please feel free to continue posting.

I'm on a really odd sleep-wake schedule. Basically, I sleep when I'm tired, and I'm up when I'm not. All the caffeine I've been ingesting has not helped my schedule.

I'm mentally too tired to write a significant post in paragraphs, so I thought I'd do something a little different using bullet points: Good Things/Odd Things/Bad Things/Thoughts/Extra. It took me almost three hours to write this post (with lots of breaks in between).

Good Things:
  • My puncture wounds from the lumbar puncture and subsequent blood patch are healing.
  • The soreness of the area is also improving.
  • I'm getting lots of rest because I have very limited internet access and there's not much else for me to do.
  • I took my second shower (in a week!) since my procedures and feel clean (though the shower exhausted me so much I slept for three hours after).
  • My husband was amazing to serve as a healthy control for this research. He has severe anxiety when it comes to getting needles poked in unusual places (he's ok with blood tests, but lumbar punctures are another matter), but he participated because he loves me so much.
  • My parents have been fantastic. I know they are incredibly stressed because of work issues and deadlines coming up, but they pretty much dropped everything to take care of Kenny and me. They've also provided me much moral support and handed me many pieces of tissues every time I've cried (which has been a few times).
Odd Things:
  • I developed an odd reaction to all the cola I was drinking. I started walking as if tipsy (i.e., drunk) but did not feel dizzy at all. I was bumping into things and losing my balance. Obviously, I've stopped the caffeine. Of course, I want to point out that it was the doctors who told me to drink so much caffeine to avoid a second blood patch! I should also mention that I did not diagnose myself with this odd reaction to cola. My doc (via the research asst) instructed me to stop.They think it has something to do with the combination of caffeine and the acidic nature of carbonated beverages.
  • I asked the research assistant how many other research participants have ended up having similar complications -- that is, spinal leak, blood patch, and subsequent fever. He said I'm the only one he knows of! My mom has always told me I was special, but I really don't want to be this special.
Bad/Sad Things:
  • Kenny went home yesterday and is back at work, so I miss him. He could have gone home sooner, but he wanted to stay with me as long as possible.
  • I still feel physically and emotionally crappy.
  • I'm still running a low-grade fever. It hasn't been as high as 100.0 since Monday, but it's been ranging from 99.2 to 99.5 the past few days.
  • I did not expect any of the complications and thought I would be going home Sunday, November 15, so I didn't bring enough mediations or spplements. Lucky me, my period started today because I didn't bring my entire pack of birth control pills. Boo!
  • I'm struggling with the fact that there are still some close family members that do not understand CFS and have not made much effort to learn more about it by asking me to share my story or asking about the disease itself. They do not seem to understand that I suffer every day. I'm pretty sure they don't think CFS is serious. They may even believe it is entirely psychological. I cried today about this. I care about them a great deal, so their ignorance hurts me that much more. (Note: I want to be clear that I am not referring to my parents. They are very supportive.)
  • I am seriously considering taking a temporary leave of absence from work for my health. I love my job and the direction of my career, but my health has been getting progressively worse this year. I feel as though I have not been able to catch up with my rest and get up to the point of health and functionality I reached last year.
  • Alternatively, I may try to negotiate reduced work hours. I am not considering quitting altogether because my job gives me a sense of purpose and enjoyment. 
  • The Georgetown CFS research group still desperately needs HEALTHY volunteers. Their research will not be valid if they don't have enough control subjects. Please spread the word! Here's a copy of the email I wrote today for my husband to forward to people he knows:
Do you or does someone you know live near Washington, DC (or are you willing to travel there for a $400 stipend)?

Georgetown University Hospital is conducting a research study called "Proteomics of Cerebrospinal Fluid in Chronic Fatigue Syndrome."

My husband and I both volunteered for the study. We checked in to the hospital on a Wednesday and checked out on Friday. Kenny completed the study with no problems and is back at work. It is taking me a little extra time to recover, but I'm still glad I did it!

They still need many more HEALTHY individuals between the ages of 21 to 65 who are willing to undergo a lumbar puncture (a.k.a. spinal tap) and other minor procedures including blood tests, breathing tests, strength tests, and filling out surveys. There is a $400 stipend that is awarded to volunteers who complete the study.

Call 202-687-8231 or email if you are interested. The entire hospital staff involved is amazingly kind and compassionate.

Please forward this email to friends and loved ones, post the info on your blog, a message boards, or website, or just stand outside and shout about it.

I have been ill with CFIDS for my entire adult life and am sick of being sick. This disease is not just about being tired. This is the kind of serious research we need more of! Please help.
Thank you for reading!

Kind regards,

Today's Activities: bedrest and occasional sitting, shower. Today's Most Annoying Symptoms: exhaustion, general lower back pain from procedures, low-grade fever of 99.5, generaly fevery feeling, mild balance problems, feeling weepy from the emotional strain.

Mood (10 is best): 4
Energy (10 is best): 2 (after my naps)
Physical Discomfort (10 is worst): 5


p1nkg0dess said...

Sorry to hear that you've had such a rough time with the testing and still are laid up! What good fortune that you have close family in the area to stay with and support you through it all. I hope you aren't stressing too much about what to do with work in the future and other thoughts--I say this because if I have a lot of time where I'm forced to rest, I feel like I need to figure things out, when really it would be more helpful to focus on the present task of relaxing and allowing myself to heal. I don't know if this is the case for you, so ignore me if you're a pro at relaxing! :-) I hope that the symptoms clear up soon so that you first of all feel better and second can get home to your husband and kitty.

Jo said...

Pretty amazing post considering you are still so poorly.

Hope you are better soon.

Joanne said...

Sorry you are still so poorly.

Just take sick leave and give yourself time to get over this setback, don't make big decisions until you are better and back home.

Decisions made when we are really low are not always the right ones. Ok to look at all your options but take all the time you need before making any decisions.

Families can't always comprehend chronic ill health and our medics don't make the situation easy for them to understand. Don't waste energy getting upset I am sure they love you, just can't get their head round it.

alyson said...

p1nkg0dess - Thank you for your post. It came at an especially important time. I am definitely NOT a pro at relaxing. ;)

Jo - Thanks for checking in! That post took a few hours for me to write, so thanks for the compliment! It was quite an exhausting accomplishment, but I felt it was important for me to continue to document my experiences.

Joanne - Thank you for your post. Your words ring true with me.