The Big Chop

(before)

Before today my last real haircut was in June of 2008. Today I had 12 inches of my hair chopped off to be donated to Locks of Love. From their website:

Locks of Love is a public non-profit organization that provides hairpieces to financially disadvantaged children in the United States and Canada under age 18 suffering from long-term medical hair loss from any diagnosis.

I first learned about Locks of Love when I was in college about ten years ago. A couple of my friends donated their hair at a special event that provided free haircuts to those who volunteered on the spot. My hair wasn't long enough to donate at the time, but the concept stuck with me.

I've actually tried to grow out my hair at least one or two times before, but each time I became frustrated with the unruly nature of very long hair and got a haircut. This was my first successful attempt at growing out enough hair that I could donate (but still have something left for me).

The irony in this hair-growing adventure is that I went through a period of several weeks during which my hair was falling out at an alarming rate. I was losing my hair at the same time I was trying to grow it out to donate it to people who had lost their hair. Huh?! Fortunately, the rate of my hair loss has slowed somewhat, and my hope is that it continues to slow to a normal rate.

In all honesty, I probably should not have gone out today because I'm fighting off a crash. I suppose I went out anyway because donating my hair was something I wanted to do sooner than later and because I have not left the house on a weekend since Sunday, July 19 (I know this because I've been keeping track of my activities on my blog).

Perhaps, going out today was my way of rebelling against my disease. Take that, CFIDS! Of course, I will be resting the remainder of today.

The good news is that my hair will soon be on its way to a new head!

(after)

Today's Activities: home & haircut. Today's Most Annoying Symptoms: exhaustion, headache, mild nausea, pain in right lymphnode in neck, mild sore throat, asthma attack; active eczema on left and right underarms, and right ankle.

Mood (10 is best): 7
Energy (10 is best): 2
Physical Discomfort (10 is worst): 6

Research Alert: CFS Genetic Study

I learned about a CFS genetic research study at the University of Illinois at Chicago through Sue Jackson's blog. This is one of the studies I mentioned in yesterday's post.

Here are her entries about the study:

• CFS Genetic Study (posted Tuesday, August 4)
• Update on Genetic Study (posted Friday, August 7)

I contacted the research assistant Caitlin Smith at cksmith@uic.edu to volunteer for the study. If you prefer the phone, you can call 312-339-5257.

I don't know if I'll be accepted, but it's worth trying!

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, mild headache, pain in neck lymph nodes; active eczema on left and right underarms, left hand, and right ankle.

Mood (10 is best): 6
Energy (10 is best): 2
Physical Discomfort (10 is worst): 5

An Exhausting Week

I'm so glad it's Friday! This week has been exhausting...so exhausting that I'm too tired to write about it... I can feel a crash coming on (the lymph nodes in my neck have been hurting like crazy the past couple of days), but I felt the need to write a quick update.

I'm being considered for a couple of CFS research studies.

I don't know if I'll actually get chosen, but I'm excited about the prospect. I've never been a research guinea pig before, but I'd pretty much do just about anything (productive) to help advance CFS research.

The two research studies I'm trying to volunteer for are the Proteomics of Cerebrospinal Fluid in Chronic Fatigue Syndrome through Georgetown University and a CFS genetic study through the University of Illinois at Chicago.

I've been in touch with both research groups and will be participating in a couple of initial screening interviews. Here's hoping!

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, mild headache, pain in neck lymph nodes, asthma attack, diarrhea; active eczema on left and right underarms, left hand, and right ankle.

Mood (10 is best): 7
Energy (10 is best): 3
Physical Discomfort (10 is worst): 6

Simple Banana Bread Recipe

I know this blog is supposed to be about my life with CFIDS, but I got this banana bread recipe from a friend and only recently had enough energy to try it out...twice! It's a simple recipe and didn't take too much energy for me to make, so I thought I'd pass it along.

My apologies to my metric system friends. I don't know the conversions for these measurements... but I found an online conversion chart here. (Unfortunately, my brain fog is preventing me from doing the conversions for you at the moment.)

First, the original recipe from my friend:

3 or 4 ripe bananas, smashed
1/3 cup melted butter
1/4 cup sugar (recipe calls for 1 cup, but she prefers using just 1/4 cup)
1 egg, beaten
1 teaspoon vanilla
1 teaspoon baking soda
A pinch of salt
1 and 1/2 cups flour

Instructions:

Preheat oven to 350 F. Mix butter into mashed bananas in bowl. Mix in sugar, egg, and vanilla. Sprinkle baking soda and salt over mixture and mix in. Add flour last. Pour batter into 4x8 inch loaf pan. Bake for 1 hour.

Here's my modified recipe:

4 ripe bananas, smashed
1/3 cup melted butter-substitute (I used Smart Balance)
1/2 cup sugar (I like it a little sweeter than my friend)
2 egg whites (2 whites = 1 egg)
1 teaspoon vanilla
1 teaspoon baking soda
Pinch of salt
1 and 1/2 cups flour
Handful of crushed walnuts

Instructions:

Preheat oven to 350 F. Mix butter into mashed bananas in bowl. Mix in sugar, egg, and vanilla. Sprinkle baking soda and salt over mixture and mix in. Mix in flour. Add walnuts to batter.

I don't have a loaf pan, so I had to get creative. The first time I made the recipe, I used muffin tins. They only needed about 15-20 minutes to bake. The second time I made the recipe, I used a small cake pan. It needed about 30-40 minutes to bake.

Enjoy!

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, active eczema on left armpit and right ankle, headache, brain fog.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 4

Research Alert: More Research Opportunities

It occurred to me that it could be useful to post additional CFS research opportunities. These research descriptions are from the U.S. National Institutes of Health ClinicalTrials.gov website. The studies were listed as Chronic Fatigue Syndrome open studies; however, I don't know how often the research information is updated or if all these studies are still in fact accepting volunteers. Proceed at your own risk...

United States

1. Vanderbilt University in Nashville, Tennessee is recruiting both CFS patients with Postural Tachycardia Syndrome (POTS) and healthy subjects between 18 and 65 years old to participate in a study called "Autonomic Nervous System and Chronic Fatigue Syndrome."

2. Georgetown University in Washington, DC is conducting a research study called "Proteomics of Cerebrospinal Fluid in Chronic Fatigue Syndrome." They are recruiting both CFS patients and healthy individuals between the ages of 21 to 65 who are willing to undergo a lumbar puncture (a.k.a. spinal tap).

3. The pharmaceutical company Hemispherx Biopharma is recruiting CFS patients ages 18 to 65 from across the United States to study the efficacy of the drug Ampligen in Chronic Fatigue Syndrome.

4. Duke University Medical Center in Durham, North Carolina is recruiting CFS patients with insomnia ages 21 to 65 for the study called "Behavioral Insomnia Therapy With Chronic Fatigue Syndrome."

5. Charles Drew University of Medicine and Science in Los Angeles, California and Pfizer are recruiting CFS patients and healthy subjects ages 18 to 49 for the study "Use of Sildenafil (Viagra) to Alter Fatigue, Functional Status and Impaired Cerebral Blood Flow in Patients With CFS."

6. University of Cincinnati in Cincinnati, Ohio and Eli Lilly and Company are recruiting CFS patients 18 to 65 years old to participate in the study "Double Blind Trial of Duloxetine in Chronic Fatigue Syndrome."

Europe

1. Haukeland University Hospital in Bergen, Norway is recruiting CFS patients between 18 and 60 years old to participate in a study called "Drug Intervention in Chronic Fatigue Syndrome" in which it will test the efficacy of the drug Rituximab.

2. UMC Utrecht, The Netherlands Organisation for Health Research and Development (ZonMw) (The Netherlands), and Innovatiefonds Zorgverzekeraars (Rvvz) are recruiting healthy subjects and CFS patients ages 12 to 18 to participate in a study called "Efficacy of Web-Based Cognitive Behavioural Treatment for Adolescents With Chronic Fatigue Syndrome."

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, painful sore on tongue, active eczema on left armpit, left hand, and right ankle, brain fog.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 3

Research Alert: Georgetown CFS Study

Do you or does someone you know live near Washington, DC?

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

They are recruiting both CFS patients and healthy individuals between the ages of 21 to 65 who are willing to undergo a lumbar puncture (a.k.a. spinal tap).

It's my understanding that they are in need of more healthy subjects. I just emailed the contact person, volunteering for the study. I don't know if I'll be accepted (since I obviously don't fall under the "healthy" category) but it's certainly worth trying!

Here is the official link about the study from the NIH's Clinical Trials.gov page.

A quote from someone participating in the study:

The Georgetown University located in washington Dc is conducting a very important study reguarding CFS. They have identified a specific set of proteins found in the cerebral spinal fluid in patients with CFS. These proteins are not found in healthy people and maybe the actual pathology of this disease itself.Upon enrollment I was informed that they are in desperite need of healthy control subjects that are WILLING TO HAVE A LUMBAR PUNCTARE PERFORMED. My girlfriend has agreed to participate with me. I am urging each and every one of you to try to recruit a healthy volunteer as these findings may very well lead to a cure of this horrific illness. Study participeints will be required to stay in the hospital for a total of three days where they will undergo testing and will be paid in the amount of $400.00 for their time. I will post a link below for those of you who maybe interested. Remember, it is up to us to make a difference! Lets solve CFS!!!

Thanks to cfswarrior for posting info about this research study yesterday.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, mild headache, active eczema on left armpit, left hand, and right ankle.

Mood (10 is best): 7
Energy (10 is best): 3 (after sleeping all day), 2 (most of today)
Physical Discomfort (10 is worst): 3