Angry and Frustrated

If you're a regular reader, you'll know that I'm a generally positive, happy person. I know this might come as a shock to some, but I'm still human! I have my share of pity party days and days when I'm angry or frustrated. Well, today is one of those days.

I've been dealing with chronic illness for my entire adult life, and I'm frustrated that so many in the medical community (and definitely the general public) are ignorant when it comes to dealing with "invisible" illnesses. Ask random people on the street what they know about ME/CFS, and you'll probably get blank looks or misinformed answers. I get even more frustrated when I hear from fellow patients whose stories of dismissive doctors echo my own.

I'm angry that I don't know what it's like to be a normal, healthy adult. I'm upset that I've spent over a dozen years and thousands of dollars searching for answers and relief only to be left with little to no relief, a lot less money, and even more questions.

I know I'm lucky that I've found a few awesome doctors who have become allies in my search for answers, but I've also had so many awful experiences with idiot doctors and nurses who think they know everything when in actuality they know very little. (One idiot doctor in particular almost cost me my life due to a misdiagnosis and ignorance of a particular medication's possible side effects.) I'm even annoyed that I feel "lucky" to have found good doctors. Shouldn't all doctors that we go to be good ones?

I feel hurt and frustrated when well-meaning friends and family tell me that, well, at least what I have isn't "more serious"/"fatal"/[insert something dismissive here]. "At least it's not [insert a more well-known illness here]" is equally dismissive and ignorant. What they're really doing is minimizing the impact my health has had on every single day of my entire adult life.

I'm also angry that very little progress has been made in terms of what we know about ME/CFS and other less common chronic illnesses. I started blogging in 2009 and had great hope that things would change for the better. Now it's 2013, and I have seen very little change.

When I started blogging, the iPad had not yet been released and people were still really excited about the iPhone 3G. Since then, the 2nd, 3rd, and 4th generation iPad models and iPhone 3GS, 4, 4S, and 5 have all been released and are old news. If we have phones that understand us when we speak and can act as personal assistants and speak back to us, why have we not made any real progress when it comes to ME/CFS and other chronic illness?

I still have hope that I will find answers to whatever is wrong with me. I'm not going to stop until I do.

Healthy Volunteers STILL Needed for Georgetown CFS Study

Note: This post is a copy and paste (and slightly edited) version of something I've posted and emailed before. I am posting again because it is so important.

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 as a healthy control 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! Volunteering for CFS research gave me a sense of empowerment.

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 cfsresearch@georgetown.edu if you are interested. The entire hospital staff involved is amazingly kind and compassionate.

Please forward this post 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!

Today's Activities: trip to hospital (again). Today's Most Annoying Symptoms: exhaustion, low-grade fever of 99.7, generally fevery feeling, headache.

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

P.S. A lot has happened this week. I will be blogging about it soon.
P.P.S. To my fellow bloggers: Please forgive me for not keeping up with your blogs lately. I have had to focus on myself a lot these days to work on getting better. I promise I will catch up with you when I am doing better.

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.)

Thoughts:

• 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. 

Extra:

• 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 cfsresearch@georgetown.edu 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,
Alyson

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

Georgetown CFS Study: Unpleasant Surprises

To my readers: Thank you for all the comments so far on all my Georgetown posts. They have really helped to lift my spirits. I have been physically and emotionally overwhelmed, so all I can do at the moment is blog (and not respond). However, I promise I will respond when I get the mental energy, so please feel free to continue posting.

I am still in DC because the doctors asked me to postpone my original flight back home after my spinal leak and subsequent blood patch. I was supposed to fly back Sunday but changed the flight to Tuesday (tomorrow).

Well, it seems that lumbar punctures are not exactly my cup of tea. This weekend I started to develop low-grade fevers. In order, my temperature was 99.2 on Saturday and slowly increased to 99.4, 99.5, 99.7, 99.8, and reached 99.9 by this afternoon. (For my metric friends, 98.6 is normal.) That's when I called the research team.

They told me to come in to the hospital right then. When they took my temperature at the hospital, it had reached 100.0. Sheesh.

I'm too tired to explain everything, but basically the fever is possibly as a result of (from least to most serious) (a) my body working on absorbing the blood patch, (b) my body fighting off some sort of virus, or (c) my body fighting off some sort of infection from either the lumbar puncture or blood patch.

I'm also still experiencing very, very mild spinal headaches, so part of my instructions are to lie down and rest and also drink LOTS of caffeine to keep the symptoms at bay so that I don't have to undergo another blood patch. Trust me, I've consumed more bottles of Coca Cola in the past few days than I have all year. I do NOT want another blood patch. I never knew cola could be part of a prescription.

Needless to say, they are watching my progress and have asked me not to fly home until this weekend. My husband is flying home tomorrow to be with our cat, Callie, and to go back to work.

I also have to reiterate the appreciation I have for the entire hospital staff, especially Dr. James Baraniuk (the lead researcher and Associate Professor of Medicine at Georgetown Medical School), Dr. Murugan Ravindran (Post Doctoral Fellow), and Yin Zheng (Research Assistant and Future Doctor), for their amazing patience and compassion.

Every time Dr. Baraniuk met with me (and it was many times including this evening), he took his time to listen to everything I had to say including my concerns and questions and explained everything, making sure I understood what was being discussed. If I missed something and asked him to repeat it, he repeated it without a hint of frustration or hurridness. He exudes patience and a great sense of humor.

After my impromptu appointment this evening, I was advised not to fly back home tomorrow and to wait until this weekend. We need to watch my fever to see if it goes up or down.

I've changed my flight again but this time didn't have to pay as much for the new flight (I had to pay a nonrefundable $150 extra to change it last time). This time it was only about $30 extra (nonrefundable, of course). Yuck. It's all starting to add up. Thank goodness for the $400 research stipend that will pay for my total airfare costs.

All in all, despite the extra surprises (i.e., complications), I do not regret any of this experience. I do it all in the name of science with the hope that useful CFS research will result.

Today's Activities: bedrest and extra trip to hospital. Today's Most Annoying Symptoms: exhaustion, mild pain in back at site of lumbar puncture, mild pain in back at site of blood patch needle entry, general lower back pain from procedures, headache, low-grade fever of 100.0, generaly fevery feeling, nausea, dizziness, feeling weepy from the emotional strain.

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

Georgetown CFS Study: Hospital Experience

I'm still lying on my back at my parents' house to aid with the healing process. It is painful to sit or stand for more than brief periods of time -- probably because of the second puncture. (My very healthy husband is up and walking around just fine today with only minor aches.)

Because I've been lying down all day for the past few days, I don't have many options for activities. I haven't been in the mood for TV lately (although I think I'll try to catch Home Makeover Extreme Edition if it's on tonight). I'm mentally too tired to read, and talking a lot is exhausting. I've pretty much spent most of my waking hours thinking.

I've got a bunch of thoughts running around in my mind and feel the need to get them all out, so this post is going to be a hodge-podge in no particular order.

The entire Georgetown University Hospital medical staff involved in this study was INCREDIBLE. Words cannot express how much grattitude I feel toward them. Every single one of the doctors, nurses, and research assistants took their time to answer any and all questions I had. They treated me with warmth and compassion.

Even when I began to have complications from the lumbar puncture and required a blood patch, they did not act as if I were throwing a wrench into their plans (even though I know I forced all of them to work late). Rather, they treated me with care and concern.

When I cried from pain, they spoke calming words to me and assured me that the pain would pass soon.

I want to especially recognize by name Dr. James Baraniuk (the lead researcher and Associate Professor of Medicine at Georgetown Medical School), Dr. Murugan Ravindran (Post Doctoral Fellow), and Yin Zheng (Research Assistant and Future Doctor) for their amazing compassion. I've encountered so many doctors and healthcare professionals who seriously lack compassion and understanding when it comes to working with patients with CFIDS.

The anesthesiologist (whose name I can't remember) was so kind and reassuring when she was explaining the blood patch procedure. She talked me through the entire procedure while she was doing it and made it less scary.

Everyone treated me with dignity. I had to go to the bathroom immediately after the lumbar puncture (even though I went before the procedure) but was not allowed to get up out of the bed. A nurse brought in a bedpan for me to relieve myself, lifted my butt, put it under me, and pulled my pants and underwear down. I was very embarrassed by this, but she acted like she did this every day (which may actually be true). In the end, I had performance anxiety and was not able to go, but I appreciated her kind attitude.

Going over my complete medical history with Dr. Baraniuk was interesting. All the little quirks I have that I didn't think much about are apparently pretty common in CFS patients. For example: I am constantly out of breath. Sometimes I get the sensation that my brain has forgotten to breathe properly and I have to consciously make the effort to breathe in and breathe out.

Another example is the fact that I easily get disoriented in the dark when I'm going from the bed to the bathroom and vice versa. I also have trouble going up and down stairs, occasionally missing a step because I "forgot" where I was on the steps.

The most profound part of my entire experience was that Dr. Baraniuk determined that I "severe" case of CFS...and he's seen A LOT of CFS patients. Wow. I suppose I've known it all along, but have been in complete denial. I have just been pushing through and "passing" as a healthy person.

My job has exhausted me to the point that I worry that I am concerned that I am only making myself sicker or at least preventing myself from getting better. At this point, I am reevaluating my life and considering my next steps. I'll write about my thoughts in a future post.

Needless to say, this entire experience has been exhausting and eye-opening.

Today's Activities: bedrest. Today's Most Annoying Symptoms: exhaustion, pain in back at site of lumbar puncture, pain in back at site of blood patch needle entry, general lower back pain from procedures, headache, low-grade fever of 99.4, nausea, crying from emotion of it all.

Mood (10 is best): 4

Energy (10 is best): 4 (after my naps)
Physical Discomfort (10 is worst): 6

Georgetown CFS Study: Day 3 (Complications)

Disclaimer: Today is November 15 (very early). I am retroactively uploading it under the correct date of the actual events.

Day three started out fine but quickly deteriorated.

Almost from the moment I woke up I started experiencing terrible headaches and nausea that only felt better when I was able to lie down.

My worst headache was so bad that I started to cry.

At first my headaches seemed very much like a migraine headache because of my light sensitivity, so they gave me migraine medication. They also gave me phenergan for the nausea and something else to help me sleep.

My reaction to the the phenergan was horrible. It was administered through my IV port and immediately started slurring my speech and causing extreme drowsiness. Also, my whole body started twitching very oddly (my arms and legs were twisting and I made weird faces). The whole experience was extremely unpleasant to say the least. I can add that to my list of medications to avoid...

I eventually fell asleep but woke up with a headache. The migraine medication did not seem to help. The headache and nausea were only made worse by my sitting, standing, or moving.

After taking a complete history of the past 24 hours since the lumbar puncture, they concluded that my headaches seemed like spinal headaches. However, they wanted to bring in an outside professional -- an anasthesiologist who often treated spinal headaches -- to determine independently if what I was having was actually a spinal headache.

She determined that I was likely having a spinal headache.

This was NOT news I wanted to hear. The treatment for a spinal headache is a procedure called an epidural blood patch. I really did NOT want to have another giant needle stuck in my spine at that point.

I honestly did not know what to do. They said I could go on complete bed rest for up to two weeks and see if I got better, or I could try the blood patch. If the blood patch worked, then my headaches would disappear almost instantly. I really did not want another poke in the back, but I also did not want to be completely bedridden for that long.

After asking the doctors for their opinions, I decided to go with the blood patch because the possible instant gratification of an absent headache was more appealing than the wait-and-see-for-weeks approach. I also didn't want to be out of commission for that long away from home.

They did the blood patch and it was more painful than the lumbar puncture itself. Bleh. Still, I did start feeling better very quickly, perhaps in less than 30 minutes? Wow!

I am now on mandatory bed rest at my parents home in DC and have had to postpone my flight back to Houston. Kenny has not had any complications, but he has insisted in staying with me until I could fly back. If all goes according to plan and my back cooperates with me, we will be flying home on Tuesday.

If you're wondering why I'm up in the middle of the night writing on my blog, it's because drinking lots of caffeine is part of my treatment plan. I think the caffeine is supposed to help with improving the cerebrospinal fluid pressure. Caffeine also has the side-effect of keeping me up even when I'm tired. After I finish my last Coke tomorrow, I don't plan to have any more caffeine if I feel ok.

Anyway, I've left out a lot of details which I'll include in another post, but I just wanted to keep everyone updated with the current news.

I will end this post with a (slightly edited) copy of the email I sent my immediate supervisor (whom I like and respect) regarding my current condition:

I thought it only fair that I explain in greater detail my sudden, upcoming absence from the office. Wednesday through Friday I participated in medical research at Georgetown University Hospital that directly involves my primary chronic illness, Chronic Fatigue and Immune Dysfunction Syndrome. The risk of participating in the research study is low with only 7% of the participants experiencing any sort of complications. Apparently, seven is my "lucky" number. (See http://clinicaltrials.gov/ct2/show/NCT00810329 for the research project.)

The most invasive part of the research involved a lumbar puncture (a.k.a. spinal tap) and the removal of 20cc of cerebral spinal fluid on Thursday afternoon. I went through the procedure fine and felt ok until Friday when my condition started deteriorating pretty quickly. I was leaking cerebral spinal fluid from my spine, so I had to have an emergency procedure called a blood patch to correct the leak. According to the doctors, I was not at risk for any major complications from the leak, but the head pain, dizziness, and nausea involved from the spinal leak was incapacitating.

I am still in some pain from the two separate punctures but am now recovering at my parents' house in Washington, DC. I have been advised by one of the the doctors on my case to stay in DC a bit longer rather than stress my body by flying back home tomorrow morning. I hope to be back at work on Wednesday, but it may be a good idea to have any major duties reassigned for the rest of the week to other people because I have become extremely weak and am limited in my endurance and ability to move.

Currently, I am on complete bed rest. I am not allowed to lift anything or bend, turn, or twist my body because I am at risk for another spinal leak. I'm not even allowed to bend over a pick up a pen that I might have dropped on the floor. Standing and sitting are painful (I am writing to you while lying down on a couch). I will be requesting wheelchair escort service at the airports for my departure from DC and arrival in Texas.

I should be back to normal Monday, November 23 and be able to resume normal duties, but the rest of this week will need to be light duties only. On the upside, other than feeling physically poor, I am mentally doing well. I do not have any regrets in participating in this research because it is my hope something good will come of this research. It's also nice seeing my mom and dad.

Anyway, that's it for now. I will continue to respond to email in between naps, as I am so woefully behind, but speaking on the phone is a bit difficult for me for the time being. By the way, I have all sorts of medical documentation if anyone needs proof of my recent activities.
See you soon.

Alyson

Today's Activities (Nov 13): research guinea pig (at Georgetown). Today's Most Annoying Symptoms: severe headache, severe nausea, exhaustion, pain in back at site of lumbar puncture, pain in back at site of blood patch needle entry.

Mood (10 is best):5
Energy (10 is best): 4 (after my naps)
Physical Discomfort (10 is worst): 9 (before blood patch) 5 after

Georgetown CFS Study: Day 2

Disclaimer: Today is November 14. I actually wrote this post on Thursday, November 12, but was not able to upload it to my blog because of lack of internet access. I am retroactively uploading it under the correct date.

I’ve got an IV inserted at the bend of my right wrist, so I’m having to type everything with my left hand. (I’m right handed…)

Today started at 4am with the insertion of an IV port and more blood tests, and cheek swabs for DNA testing. I had another round of pain tests, and the rest of the time was prepping and waiting for the lumbar puncture.

The lumbar puncture itself went fine. It wasn’t exactly my idea of a good time, but I did not feel any pain from the actual procedure. Ironically, it’s the stuff they use to numb the area that hurts the most!

Kenny and I are now resting peacefully (napping and watching lots of TV, not necessarily in that order). They've given us medication to help with sleep, so I'm falling asleep now.

That’s all for now!

Today's Activities: research guinea pig (at Georgetown). Today's Most Annoying Symptoms: mild headache, mild nausea, exhaustion, dull pain in back at site of lumbar puncture.

Mood (10 is best): 7
Energy (10 is best): 4 (after my naps)
Physical Discomfort (10 is worst): 5

Georgetown CFS Study: Day 1

Please see I'm in the Georgetown CFS Study for background.

It's very late, but I felt the need to write a quick post about the Georgetown CFS study that my husband and I are participating in.

Kenny and I arrived in Washington, DC late last night. Here's the best part: no migraine! My dad picked us up, and we spent the night at my parents' house.

This morning we checked into Georgetown University Hospital and immediately started getting down to business. In addition to going over our complete health histories (mine took over an hour; Kenny's took about two seconds), we did pain testing (not as bad as it sounds), strength testing (turns out I'm not that strong...big surprise), pulmonary function testing (the exhausting part was when they made me hyperventilate intentionally), a couple of other random tests (like measuring my nasal passages), and had blood drawn. All this took all day and went into the evening.

Somewhere in between tests, they let me sleep for about an hour and a half because the testing was so exhausting.

Tomorrow is the cheek swab, lumbar puncture, and urine collection period, and Friday involves more blood tests. We'll be released around noon on Friday.

And believe it or not, the hospital food I've had so far (lunch and dinner) has been great! Well, except for the green jello, which I found to be questionable.

I haven't felt nervous about the lumbar puncture so far, but Kenny has a lot of anxiety. I am hoping he feels OK to do the procedure tomorrow. The hospital staff has been amazing. The primary researcher and his assistants are fantastic and have a wonderful bedside manner, and the nurses are quite attentive.

I'm really excited to be a part of this study!

That's it for now, I have to sleep.

Today's Activities: research guinea pig (at Georgetown). Today's Most Annoying Symptoms: mild headache, mild nausea, sensitivity to light, exhaustion.

Mood (10 is best): 7
Energy (10 is best): 4 (after my nap)
Physical Discomfort (10 is worst): 3

Headache Hindsight Meltdown

Disclaimer: I had brain fog while writing this post. Please excuse any rambling or incoherent sentences.

It's taken me a little more than a week, but I've mostly processed what happened to me the Sunday I arrived in California. (See The Worst Headache of My Life for background info.)

Immediately after the experience I went into some sort of denial, brushing off the headache as a one-time deal. It was just a really bad migraine. Nothing to worry about, right? However, as things began to sink in, I started to realize that what happened could have had a much more serious outcome.

Not to be dramatic, but having such a severe headache could have been a symptom of all sorts of horrific brain events that I'm not going to go into. All you have to do is google "worst headache of my life" and see all the gruesome possibilities. I am fortunate that my headache turned out not to be as a result of a more serious and more immediate problem. Of course, I did not know that at the time.

In hindsight, I realize that I should have called 911 and gone to the hospital. If my husband or anyone I knew were having such an incapacitating headache and were not able to move or think straight and started vomiting as I did, I would have called an ambulance without hesitation. Unfortunately, I was alone and not thinking well, so I did not make the best choice.

I got all this wonderful hindsight about last week's headache experience yesterday. Unfortunately, it took another migraine to knock sense into me. I started to get another bad headache as I was flying back home from California yesterday. By the time I collected my luggage and got to my car, my head was pounding and I was feeling nauseated. I immediately took medication for my headache.

My head started to feel better after about an hour and the pain never reached an intolerable level, but the experience scared me because it was so similar to the last time -- getting a headache while flying that only got worse after landing.

When I got home to my husband, Kenny, I started crying. All the stress of my experience and being away from home hit me at once. He held my hand and let me cry. I had a meltdown.

My husband insisted that I call the doctor an make an appointment to get checked out. Since it was a Sunday I couldn't call to make an appointment at that time, but Kenny wrote a reminder on a post-it note for me to call. I called today an got an appointment for next Monday.

I fly quite a bit and have not had problems in the past. However, I seem to have developed a headache problem related to flying. I have another flight tomorrow. This time my husband is coming with me. We are traveling to Washington, DC for our participation in the Georgetown CFS study.

I am excited about this trip because it means participating in real CFS research, but I'm nervous about the possibility of getting another major migraine after we land. On the upside, I will be with family. My husband is coming with me, and my parents live in Washington, DC.

Today's Activities: work. Today's Most Annoying Symptoms: headache, exhaustion, pain in right arm.

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

I'm in the Georgetown CFS Study!

I'm in the Georgetown CFS Study, and so is my husband Kenny (he's a healthy control subject)! The study is called "Proteomics of Cerebrospinal Fluid in Chronic Fatigue Syndrome."

I got verbal confirmation last week of our actual study dates (i.e., when they want us to be at the hospital), but I wanted to wait until I received written confirmation before I shouted about it on my blog. The confirmation came in late this afternoon. We'll be flying to Washington, DC in November!

I've been hoping to get into this study since August 1 (see my August 1, August 18, September 10, September 22, and September 27 posts for background).

This post is relatively short because I'm exhausted and brain fog is closing in, but I just had to post this update.

If you're keeping up with my flu shot update, you'll be happy to know that I still haven't had any sort of major crash. I'm exhausted, but still ok.

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, sore right and left lymph nodes in neck, low-grade fever 99.3.

Mood (10 is best): 8
Energy (10 is best): 2
Physical Discomfort (10 is worst): 4

P.S. If you know any healthy people who live near DC or are willing to travel there, please tell them about this research. The research coordinators are in need of more healthy volunteers. Volunteers will be compensated $400. Click on the study's name above for the official research description and contact info.

Discovery: XMRV Retrovirus Linked to CFS

Image of XMRV from Whittemore Peterson Institute

Wow! This discovery is all over the news. Check out these articles:

Scientific American "Retrovirus Linked to Chronic Fatigue Syndrome, Could Aid in Diagnosis"

National Cancer Institute "Consortium of Researchers Discover Retroviral Link to Chronic Fatigue Syndrome"

Medical News Today "Retrovirus Linked To Chronic Fatigue Syndrome"

New York Times "Virus Is Found in Many With Chronic Fatigue Syndrome"

Reuters "Study isolates virus in chronic fatigue sufferers"

The Independent "Has Science Found the Cause of ME?"

Nature "Virus linked to chronic fatigue syndrome"

NPR "Virus Linked To Chronic Fatigue Syndrome" (includes link to audio recording)

ABC News Video "CFS Linked to XMRV Virus" (approx 1 minute)

CFIDS Association "Landmark CFS research reported in Science magazine"

BBC "ME virus discovery raises hopes"

US News and World Report "Retrovirus May Be at Root of Chronic Fatigue Syndrome"

The Australian "Chronic fatigue linked with virus"

The Wall Street Journal "The Virus That Links Prostate Cancer & Chronic Fatigue Syndrome"

Telegraph "Most cases of chronic fatigue syndrome linked to virus"

The Washington Post "Virus Associated With Chronic Fatigue Syndrome"

WebMD "Retrovirus Linked to Chronic Fatigue Syndrome"

Whittemore Peterson Institute for Neuro-Immune Disease: Overview and Q&A about their research

This post is short because I'm on my lunch break. I'll add new links as I find them.

Update: The list of articles goes on and on. Too many to list! I can't even express in words how much hope this gives me...

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, nausea, itching.

Mood (10 is best): 9
Energy (10 is best): 3
Physical Discomfort (10 is worst): 4

Sick & Georgetown Update

Sorry about the longer than expected absence. I think I'm having a delayed crash from my trip to the Midwest (see Back from the Midwestern US for background). I've been sick with a fever all weekend. I've slept about 16 hours per day (including naps) since Friday and haven't felt up to blogging (or really doing anything).

Ugh. I'm sick of being sick.

I'm still not feeling especially great right now, but I felt the need to post my promised update about Georgetown (see Georgetown CFS Study and Hoping to be a Human Guinea Pig for background info).

The Georgetown research coordinator called me a little over a week ago to let me know that they wanted to schedule me for October. He asked me when I was not available, so I gave him those dates. He then told me he'd get back to me soon with dates they could schedule me. I then asked if they still needed more healthy volunteers, and he answer was a resounding yes. I promised that I would get the word out.

I was really excited after this phone call, thinking that this was actually going to happen for me.

I still haven't heard back...and October is just a few days away. This situation has been dragging on since August 1. I'm suspecting (and a few others have mentioned this to me as well) that they need many more healthy volunteers before they can bring in more CFIDS patients. Unfortunately, it seems that not many healthy people are willing to undergo a voluntary lumbar puncture. Go figure.

Another hitch in the plan is that there is a chance that I may not be able to get the time off from work to participate in the study. This possibility is upsetting to me. Of course, I hope everything works out because it would mean a lot for me to be a part of significant CFS research. I'm not exactly sure why participating in this study is so important to me. It just is.

Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, headache, eczema flare up on right ankle, low-grade fever.

Mood (10 is best): 5
Energy (10 is best): 2 (after sleeping all day), 1 (most of this weekend)
Physical Discomfort (10 is worst): 4

Research Alert: Healthy Volunteers Needed for Georgetown CFS Study

Do you or does someone you know live near Washington, DC (or are you willing to travel there at your own expense)?

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

I have volunteered for this study (will post an update about this soon); however, 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. There is some financial compensation for completing the study.

Call 202-687-8231 or email cfsresearch@georgetown.edu if you are interested.

Please spread the word. Forward this post, email your friends and loved ones, post info on your blog or message boards, or just stand outside and shout about it.

This is the kind of serious research we need more of!

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, muscle fatigue, headache, nausea, light headed.

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

All Sorts of Updates

Well, today is Day Three of my latest low-grade fever. It's bad enough that I feel really awful (more so that usual, that is), but not bad enough for me to stay home from work (if you've been following my blog closely for a while, you'll know I'm short of sick/vacation leave).

BLOOD TESTS

I've been meaning to post the results of my most recent vitamin D and iron (ferritin) levels for a while, but I kept forgetting (brain fog, you know). Both my ferritin and vitamin D levels went down a little since the last test.

My ferritin level was measured at 38 ng/mL. Previously, it was 41 (last test), 50, and 17 (first test). My GI doctor would prefer to see my ferritin level at around 70, though she's just happy with it being so much higher than 17. Currently, I'm taking high levels of prescription iron only every other day because taking it every day caused massive constipation. I think I'm destined to be on the lower side of normal when it comes to iron levels.

My vitamin D level was measured at 40 ng/mL. Previously, it was 49 (last test), 41, and 29 (first test). My GI doc would like to see a level higher than 50. I'm going to up my dose of vitamin D to 2,000 IU per day (I've been taking 1,000 IU per day since my first vitamin D test).

In my July 2 post Human Pin Cushion, I mentioned a micronutrient blood test for which I had blood taken. Over a month passed, and I didn't hear anything from my doctor or the lab. I called my doctor's office who, in turn, called the lab who said that the sample had been damaged so they couldn't run the test. Great. They didn't even bother to inform anyone about this.

I ended up going back to get blood drawn for this test a week or so ago (can't remember exactly when). I'm still looking forward to the results because they'll indicate if I'm missing essential vitamins or minerals.

HUMAN GUINEA PIG OPPORTUNITIES (a.k.a. research)

See Hoping to Be a Human Guinea Pig for background. I still have not had the opportunity to give a single drop of blood or other bodily fluid for the sake of CFS research. This disappoints me. Researchers at both Georgetown and the University of Illinois - Chicago have told me that they'll get back to me about my possible participation. So far, I've heard nothing. Nada.

On the upside, I'm participating in a fatigue study through the University of Utah. I've also submitted surveys for the University of Michigan's Chronic Illness Survey and the National Fatigue Survey through the Florida Institute of Technology's Fatigue Management Institute. I'm interested in looking into the University of New England - Australia's fatigue study. I plan to do that when I have the mental energy.

I'm really much bigger on the blood and bodily fluids kind of research, but at least surveys are better than nothing.

MY NEW TREATMENT PLAN (methlyation protocol)

On July 13 I announced that I was Starting a New Treatment Plan. Unfortunately, there's not much to report yet because I haven't gone back to get my glutathione level tested again. I'm still taking the doses I listed in my treatment plan post every other day.

Physically, I don't feel any improvement, but that doesn't necessarily mean I'm not improving. According to the research and anecdotal information from others on the protocol, some people go through a period of "detox" that makes them feel worse (or just not better) before they actually start to feel better.

I do know that my body chemistry has changed or is changing. I used to feel cold very easily nearly all the time (even when others felt warm). Now I get what seem like hot flashes, where my face flushes red and I start to sweat profusely.

All I can say is that I'm not giving up, and I will report any changes in a future post.

Today's Activities: work. Today's Most Annoying Symptoms: headache, nausea, dizziness, muscle fatigue, sinus pressure, low grade fever.

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

Research Alert: U of New England, Australia - Fatigue Study

Text from the CFIDS Association Bulletin Board (i.e., posted items are not subject to review):

Project Title: Predictors of subjective fatigue in three samples: chronic fatigue syndrome/myalgic encephalomyelitis and multiple sclerosis patients and university student controls. Investigators: Rhonda Brown, PhD.; Einar B. Thorsteinsson, PhD., University of New England, Australia.

The purpose of this study is to investigate the relationship between fatigue, stress, anxiety, depression, viral infection symptoms, sleep disturbance, and a number of specific stressors, unhealthy behaviours, psychosocial factors, and cognitions. Fatigue often has a physiological basis (e.g. viral infection), but previous research has shown that fatigue also has psychological aspects.

This research is intended to help us better understand the way in which psychological factors impact on fatigue over a period of time. Participants will be asked to complete set of questionnaires three times (i.e., now, 6 months from now, and then 12 months from now).

If you are interested in participating in this study, or would like more information before you decide, please click on this link: http://www.surveymonkey.com/s.aspx?sm=sAu4Ep2exYGsdAW_2bc6UQMg_3d_3d

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, headache, brain fog, active eczema on left and right underarms, slightly achy lymph nodes in neck.

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

Research Alert: University of Utah Fatigue Study

Text from a fellow blogger's website:

Individuals who have had severe, unexplained fatigue for at least six months and who have no serious abnormalities on medical tests are wanted for a study of chronic fatigue. Patients who qualify for the study will be asked to complete three questionnaires over a six month period. Participating in the study will not alter the treatment that your physician gives you. The purpose of the study is to evaluate whether patients treated by certain types of physicians improve faster than patients treated by other types of physicians. If you may be interested in participating in this study, please contact the study coordinator, Kathleen O’Connor at (801) 587-4741. For more information email kathleen.oconnor@hci.utah.edu or visit our website at https://hci-as2.hci.utah.edu/CFSurvey/app.

Thanks to cfswarrior for bringing this study to my attention!

Today's Activities: home & evening work commitment. Today's Most Annoying Symptoms: exhaustion, mild headache, active eczema on left and right underarms, sore lymph nodes in neck.

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

Research Alert (2nd posting): National Fatigue Survey - US Only

The other day someone from the Fatigue Management Institute visited my July 30 post, National Fatigue Survey (US only). Here is the comment he/she left on August 25:

Thanks for posting information on our National Fatigue Survey, and thanks to all who have participated. We will break out results by types of medical disorders, such as rheumatoid arthritis and chronic fatigue syndrome, if we have a large enough response rate. Please encourage others to participate, as the Survey will be available through January 31, 2010, and we are not yet reaching as many of the individuals who deal with fatigue as we would have liked.

Corinne Russell
Dr. Thom Harrell
Fatigue Management Institute

I responded with the promise that I would re-post the survey info. From this point on, I am copying and pasting from my original July 30 post.

**********
Rather than trying to summarize in my own words, here is the information directly from the website:

The Fatigue Management Institute is conducting a nationwide survey of what it's like to experience chronic fatigue. The purpose of the survey is to develop a better understanding of fatigue in chronic medical conditions and to improve treatments and techniques for managing fatigue.

We encourage you to participate if you experience significant or chronic fatigue. The survey takes about 20 minutes to complete. Your participation is completely anonymous. We do not ask for your name, e-mail address, or any identifying information. The information obtained will be used only to better understand fatigue and its management in chronic illness.

Our findings will be presented at professional meetings and in medical journals only as group data, and no specific individual information will be published.

Take the survey.

About The Fatigue Management Institute

The Fatigue Management Institute is an outgrowth of the fatigue-related research and clinical programs developed in the School of Psychology at the Florida Institute of Technology. The Institute serves as the focal point for integrating emerging research findings with techniques for day-to-day management of fatigue. The Institute conducts research on fatigue and fatigue management interventions, provides fatigue management training, and disseminates summaries of national and international research findings related to fatigue and its management in chronic medical conditions.

This survey is studying chronic fatigue in general (i.e., not specifically Chronic Fatigue Syndrome). I filled out the survey, and it took what felt like forever to complete it. Though I didn't time it, I'm not so sure I agree with that 20 minute estimation... Make sure you've got the stamina before trying to fill it out.

Thanks to Shelli for posting this survey the other day!
**********

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, mild headache, active eczema on left and right underarms, ringing in ears, uncomfortable intestines.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 5

Feeling Much Better Now

Thank you to everyone who posted words of support! I'm feeling much better now. Of course, I'm still as tired as ever, but my mood has improved greatly since the weekend.

After this Sunday's day-trip for work passed without a major crash, it felt like a weight was lifted off my shoulders. I think the anxiety I had about that trip was much more than I realized. I've also been steadily feeling better physically since my return from North Dakota. The viral symptoms (low-grade fever, sore lymph nodes and throat) have pretty much gone.

Work is still extremely busy, but I have started a different way of keeping track of all my projects. In the past, I have kept separate "To Do" lists for myself, depending on the individual project. I would try to write my lists of things to do in order of importance or priority. This took a lot of effort and brain power.

Now I just have one long "To Do" list that I add to whenever I think of anything I need to do, regardless of the project, its order of importance, or priority. It's much easier to not have to prioritize or rank order everything. I started this list on Friday, and it's already made a big difference in how I feel. I've even become more efficient in getting things done!

The fatigue is still a problem. I've been sleeping 9-10 hours a night on weeknights (and more on weekends), but it's not helping (no surprise there). On the upside, I'm feeling better mentally. Without mental strength, everything is 100 times as challenging...including physical healing.

Other thoughts on my mind...

• I'm still waiting to hear back from Georgetown and University of Illinois at Chicago. I'm starting to feel like I've been dumped. I haven't heard a peep from either research project. I suppose only time will tell if I'll be able to be a part of a research project.
  
  
• I have invited my husband Kenny to write a few blog entries about CFIDS to post on my blog. You'll start to see his posts from time to time in the next week or two.
  
  
• I really need to balance my checkbook.

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, pounding headache.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 5

Current Medications and Supplements

During one of my phone conversations with the Georgetown research people, I was asked to email them a list of my current medications and supplements. I kept putting this off until last night.

My brain fog was so horrendous yesterday after work that it took me over two hours to compose an email about my current medications and supplements.

It really shouldn't have taken that long, especially considering most of them are already listed in my May 2009 post Medications and Treatments. I think what took the most mental energy was categorizing everything into groups that made more sense AND trying to include dosage information.

Anyway, I though it might be an interesting update to my blog, so here is my (slightly edited) email to Georgetown.

(Oh, and if you're wondering why I keep talking about Georgetown, check these out: Hoping to be a Human Guinea Pig, Georgetown CFS Study, and the official research link.)

Hello!

In a previous phone conversation, Dr. R asked for a list of my medications. Unless noted otherwise, I take these medications/supplements daily.

Diagnosed Conditions:

• Allergies
• Asthma
• Eczema
• Acid Reflux
• Irritable Bowel Syndrome
• Chronic Fatigue Syndrome
• Polycystic Ovarian Syndrome
• Thalassemia Minor
• Interesting to Note: In 2008, I developed migraines and had them on and off for several months; however, my migraines now seem to have been replaced with somewhat less severe headaches that occur more frequently.

Rx medications:

• Advair 250/50
• Albuterol (as needed)
• Flonase nasal spray
• Zoloft,12.5-25mg
• Yaz
• Tandem, 106 mg elemental iron (every other day)

Medications/Supplements provided through my PCP's office (specifically for my CFS):

• ATP-20, 20 mg Adenosine Triphosphate (twice a day)
• Glyceron Plus IM injections (combination of three substances, one of which is glycyrrhizin...I can't remember the other two) - about once a week if I remember (which ends up being less than once a week).
• Glutathione IV - a few times a year, because this treatment is a bit pricey and takes a while to administer, I don't go very often for this.

OTC Medications/Supplements recommended by one of my doctors (PCP, GI, or Allergy/Asthma doc):

• Zyrtec, 5mg (10 mg if allergies are really acting up)
• Vitamin D, 1000 I.U.
• Fish Oil, 1000 mg
• Hydrocortisone (for eczema)
• Lactase (I take this only when I remember...which is not very often)
• Multi-vitamin (every other day; I take a different multi on alternate days -- see below)

OTC Supplements based on Rich Van Konynenburg's research: "Simplified Treatment Approach Based on the Glutathione Depletion- Methylation Cycle Block Pathogenesis Hypothesis for Chronic Fatigue Syndrome" (I made sure to get permission from my PCP before starting this treatment plan). I take these supplements every other day:

• 1/2 tablet of Perque Activated B-12 Guard (1,000 mcg; full tablet is 2,000 mcg)
• 1/4 tablet of Metagenics FolaPro L-5 Methyl Tetrahydrofolate (200 mcg; full tablet is 800 mcg)
• 1/4 tablet of Metagenics ActiFolate (200 mcg; full tablet is 800 mcg)
• 1/4 tablet General (multi) Vitamin Neurological Health Formula
• 1 softgel Phosphatidyl Serine Complex (500 mg)

OTC Medications/Supplements I have chosen to take based on my own research to aid with my IBS:

• Citrucel fiber supplement, 1000 mg
• Some sort of probiotic (usually acidophilus, but I have been trying different ones lately), currently I'm taking Digestive Advantage IBS Bowel Fitness Formula (which includes Bacillus coagulans GBI-30, 6086)

OTC Medications/Supplements I take from time to time (i.e., less than once a week):

• Tylenol and/or Advil for headaches; I have headaches almost every day (though most of the time I try to avoid any headache medications since I'm already taking so many other things)
• Melatonin, 5mg (for insomnia)
• Benedryl, 25-50 mg (for insomnia, but only if I'm really desperate)
• PreparationH (if my hemorrhoids are acting up)
• Monistat for yeast infections
• Athlete's foot antifungals

Medications I took in the past for migraines (but no longer take):

• Midrin
• Relpax
• Interesting to Note: I found that these medications did not satisfactorily relieve my migraines, though they did help somewhat.

Other Important Info:

• I am currently undergoing immunotherapy for allergies to: trees, grasses, and dust mites.
• I have allergies to other things including quinolone antibiotics, the glue on bandaids, and all types of earrings. I have a sensitivity to mesalamine. When I last took it, it resulted in neurological problems and hair loss.
• I experienced relatively low ferritin levels (17ng/mL) earlier this year, which is why I am on iron supplements every other day. My last few tests have ranged between 40 and 50.
• I had relatively low vitamin D levels (29 ng/mL) earlier this year, which is why I am on daily vitamin D supplements. My last three blood tests have shown levels in the 40's.

• I keep track of my oral medications/supplements by using a 7-day pill organizer that divides each day by Morn, Noon, Eve, Bed.

Please let me know if you need any additional information.

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, headache, nausea, brain fog, low fever that comes and goes.

Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 5

Hoping to be a Human Guinea Pig

Disclaimer: My brain fog is acting up today, so I can't remember what I've already said about the following topic (and I'm mentally too tired to read through my blog to find out).

I'm really excited because I'm getting closer to being able to participate in worthwhile CFS research. I use the term "worthwhile" because there is so much junk CFS research out there. The more scientists know about this disease, the more likely they will be able to come up with some answers.

I've received the informed consent documents from both the Georgetown study and the University of Illinois at Chicago study.

I spoke with the Georgetown representative today and the next step is to schedule my visit to Washington, DC. The rep is supposed to email or call me later this week with available dates.

My next step in the UIChicago study is to have a phone interview. They'll call me after they receive my signed informed consent documents.

Lately I've found myself wishing more often that I were well. I've also been feeling a bit resentful toward my disease. This weekend in North Dakota was particularly bittersweet. I was able to see my family (and especially my nieces), but I spent so much time sleeping or restricting my activities that I felt left out. And that's another thing. I've been feeling left out an awful lot lately.

I think I so badly want to participate in CFS research is because I want to do my part to find a cure (or at least a treatment) for CFIDS. My reasons are selfish; I am getting desperate for some relief.

I've been sick for my entire adult life. Can't a girl get a break?!

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, headache, low fever, sore throat, achy body, brain fog.

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