I'm feeling quite ill today, but I felt the need to write a post because I feel it's important to document my experiences during this challenging time. I am mentally fatigued, so I will be writing this post in spurts and as thoughts come to mind. I also do not plan on proofreading this post, so please ignore any odd text.
I went to see my regular doctor on Wednesday, and she pretty much echoed everything the Georgetown doctor said and recommended. She also added her own suggestions. I'll write about all the two doctors' recommendations in a future post.
When I said that the other doc recommended that I stay out of work until January, she said "at least until January." Yikes! I hope that's not the case. I already miss my work friends, who are (if the truth be told) my only friends since I don't have a social life. I also enjoy my job. I can watch only so much TV before it gets old.
Like many Americans, my husband Kenny and I celebrated Thanksgiving with his family Wednesday night and much of Thursday (they live about 30 to 45 minutes away by car). I made sure to rest before and during the experience as much as possible, but I still managed to overdo it simply by participating.
After having an almost perfect temperature of 98.8 at the doctor's office on the Wednesday morning before Thanksgiving, my temperature went back up to 99.8 by Friday and is currently running at 100.0 as I write this post. I have not left the house since we got back home on Thursday.
Despite the setback, I do not regret spending time with family. Now that I spend my days at home rather than seeing colleagues and friends at work, contact with other humans (I love my cat, but...) has become more valuable. I also enjoy spending holidays with family.
Tomorrow I have an appointment with a neurologist. We're going to talk about my headaches, which have been increasing in frequency and intensity since the worst headache of my life on November 1. The Georgetown doc recommended that I see a neurologist, and my regular doctor referred me to the one I'm seeing tomorrow.
My only concern is that the drive will be a long one, and I have to drive myself. I'm going to leave extra early so that I can pull over to rest along the way if I need to.
Though I'm still feeling physically awful, I am feeling better mentally. I have come to accept my new situation (I was in denial for a bit); however, I have also made the decision to aggressively work on getting back to my "normal" or even better. I'll write about some of my plans in a later post.
I've also slept better the past two nights. I have been battling some terrible insomnia lately (trouble falling and staying asleep), so it's been a relief to sleep through the night for a change. I give credit to the trazodone prescription the Georgetown doc suggested and my doctor prescribed. The doctor recommended it because it is less addictive than most other sleep medications.
It took a couple of days of taking the medication before it seemed to help, but it seems to be working in part. I still have trouble falling asleep, but they staying asleep problem bothered me more.
Baby steps...
Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, low-grade fever of 100.0, generally fevery feeling, headache, nausea, sore lymph nodes under arms.
Mood (10 is best): 6
Energy (10 is best): 1
Physical Discomfort (10 is worst): 5
Sunday, November 29, 2009
Monday, November 23, 2009
Too Sick to Work
I have fallen into such a major crash that I am no longer able to work at this time.
Since my lumbar puncture and subsequent blood patch (see previous posts regarding the Georgetown CFS study for background info), I have been running constant low-grade fevers and been extraordinarily weak. I have been sleeping 10-12 hours per night and have needed another 3-6 hours worth of naps each day. And I'm still exhausted.
I've been plagued with daily headaches ranging from dull aches to full-on migraines. The lymph nodes in my neck and armpits have recently become more sensitive, and my throat has hurt for the past couple of days.
In short, I'm a physical mess.
I haven't left the house since I flew back home from Washington, DC on Saturday. My wonderful and loving husband, Kenny, has been taking care of me. He has picked up where my parents left off. It is fortunate that he has this week off from work. Kenny has been preparing all my meals and even helps me sit up in bed when I'm feeling extremely weak.
About half of my waking hours are spent lying down. The rest are spent sitting. I'd say I have about three or four good hours a day at most when I can think clearly and feel almost human.
I was at Georgetown University Hospital on Friday (my third visit in a week due to my continued fevers, headaches, and general crappiness), and I asked the doctor (a CFS expert, by the way) if he thought I should take a temporary leave of absence or work part time for a while. He looked me in the eye and said I should not go back to work until January.
I was shocked that he would suggest such a long period of time. At the time I asked the question I knew I was bad off, but I didn't think I was that bad off. This was me in denial. Thank goodness the Georgetown doc saw through my nearly always smiling "I'm ok" exterior to see that I was not ok.
I haven't been this sick in years.
I am now filing for short term disability.
The process is a bit convoluted if you ask me. An outside company will be deciding (a) whether or not to approve my disability claim and (b) if they approve it, they will decide how long I will be allowed to stay out of work. Even though the doctor has recommended I not go back until January, this outside company could say I need to go back immediately.
Despite all the insanity, I do not regret volunteering for the research study. In fact, I told the research team that if they have any future CFS studies, I would be ready and willing to volunteer.
I will be seeing my regular doctor on Wednesday. I have a lot to discuss with her, but I'll save this topic for another post.
Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, low-grade fever of 99.6, generally fevery feeling, headache, migraine earlier today, nausea.
Mood (10 is best): 4
Energy (10 is best): 1
Physical Discomfort (10 is worst): 5
Since my lumbar puncture and subsequent blood patch (see previous posts regarding the Georgetown CFS study for background info), I have been running constant low-grade fevers and been extraordinarily weak. I have been sleeping 10-12 hours per night and have needed another 3-6 hours worth of naps each day. And I'm still exhausted.
I've been plagued with daily headaches ranging from dull aches to full-on migraines. The lymph nodes in my neck and armpits have recently become more sensitive, and my throat has hurt for the past couple of days.
In short, I'm a physical mess.
I haven't left the house since I flew back home from Washington, DC on Saturday. My wonderful and loving husband, Kenny, has been taking care of me. He has picked up where my parents left off. It is fortunate that he has this week off from work. Kenny has been preparing all my meals and even helps me sit up in bed when I'm feeling extremely weak.
About half of my waking hours are spent lying down. The rest are spent sitting. I'd say I have about three or four good hours a day at most when I can think clearly and feel almost human.
I was at Georgetown University Hospital on Friday (my third visit in a week due to my continued fevers, headaches, and general crappiness), and I asked the doctor (a CFS expert, by the way) if he thought I should take a temporary leave of absence or work part time for a while. He looked me in the eye and said I should not go back to work until January.
I was shocked that he would suggest such a long period of time. At the time I asked the question I knew I was bad off, but I didn't think I was that bad off. This was me in denial. Thank goodness the Georgetown doc saw through my nearly always smiling "I'm ok" exterior to see that I was not ok.
I haven't been this sick in years.
I am now filing for short term disability.
The process is a bit convoluted if you ask me. An outside company will be deciding (a) whether or not to approve my disability claim and (b) if they approve it, they will decide how long I will be allowed to stay out of work. Even though the doctor has recommended I not go back until January, this outside company could say I need to go back immediately.
Despite all the insanity, I do not regret volunteering for the research study. In fact, I told the research team that if they have any future CFS studies, I would be ready and willing to volunteer.
I will be seeing my regular doctor on Wednesday. I have a lot to discuss with her, but I'll save this topic for another post.
Today's Activities: home. Today's Most Annoying Symptoms: exhaustion, low-grade fever of 99.6, generally fevery feeling, headache, migraine earlier today, nausea.
Mood (10 is best): 4
Energy (10 is best): 1
Physical Discomfort (10 is worst): 5
Friday, November 20, 2009
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.
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.
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:
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
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).
- 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.
- 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 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
Monday, November 16, 2009
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
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
Sunday, November 15, 2009
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
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
Friday, November 13, 2009
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:
Mood (10 is best):5
Energy (10 is best): 4 (after my naps)
Physical Discomfort (10 is worst): 9 (before blood patch) 5 after
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.)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.
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
Mood (10 is best):5
Energy (10 is best): 4 (after my naps)
Physical Discomfort (10 is worst): 9 (before blood patch) 5 after
Thursday, November 12, 2009
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
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
Wednesday, November 11, 2009
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
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
Monday, November 9, 2009
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
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
Friday, November 6, 2009
Dipping a Toe in the Alternative Medicine Waters (Part I)
My journey down the path of alternative medicine began due to the influence of my current doctor. She is an Internal Medicine doctor who treats many patients with HIV/AIDS or CFS. I think she is used to dealing with patients who have been marginalized or brushed off by others in the healthcare field. She has an amazing amount of compassion for her patients.
I first went to her in 2005 when I was 26 years old. I had been too sick to hold a full-time job for a couple of years by that time. At the time my health fluctuated between being completely bedridden and needing assistance to get to the bathroom to being able to leave the house for brief outings.
After doing her due diligence and ruling out other diseases, she diagnosed me with Chronic Fatigue and Immune Dysfunction Syndrome. She immediately started me on Glutathione/ATP injections, which I viewed as alternative medicine and my previous physician called “fringe medicine” and discouraged me from trying it. Needless to say, I left that previous physician for my current doctor.
I saved the original email that I sent to friends and family on the day I received my diagnosis, Thursday, May 19, 2005. Getting a diagnosis was a profound experience for me. Following is the email I sent in 2005 (edited for spelling):
I credit the Glutathione/ATP injections for allowing my health to improve enough for me to work full-time. I’m no longer on those particular injections because they became too painful to tolerate, but I am on different injections and other supplements…but that’s for another post.
Today's Activities: travel for work. Today's Most Annoying Symptoms: intermittent nausea and vertigo, exhaustion, muscle fatigue, sore muscles.
Mood (10 is best): 5
Energy (10 is best): 2
Physical Discomfort (10 is worst): 4
I first went to her in 2005 when I was 26 years old. I had been too sick to hold a full-time job for a couple of years by that time. At the time my health fluctuated between being completely bedridden and needing assistance to get to the bathroom to being able to leave the house for brief outings.
After doing her due diligence and ruling out other diseases, she diagnosed me with Chronic Fatigue and Immune Dysfunction Syndrome. She immediately started me on Glutathione/ATP injections, which I viewed as alternative medicine and my previous physician called “fringe medicine” and discouraged me from trying it. Needless to say, I left that previous physician for my current doctor.
I saved the original email that I sent to friends and family on the day I received my diagnosis, Thursday, May 19, 2005. Getting a diagnosis was a profound experience for me. Following is the email I sent in 2005 (edited for spelling):
I finally have a diagnosis.Reading this email brings back mixed emotions, including the pain I went through trying to find a doctor who would take me seriously.
It's Chronic Fatigue and Immune Dysfunction Syndrome.
I cried for an hour after I received my blood test results. I have been vindicated. Lyme disease, EBV, lupus, herpes, and many other diseases were ruled out. My thyroid, liver function, red and white blood cells, and all other USUAL things tested in a full blood work-up were within normal limits.
HOWEVER...
My natural killer cells count was 90 (normal is 300-500). My ATP count was 10 (normal is 30). These results combined with my other symptoms, current ailments, and past health history are consistent with other patients with CFIDS. I now have medical evidence that my body is not as healthy or normal as many doctors/nurses have insisted.
The doctor treating me is in Internal Medicine and specializes in treatment of CFIDS and other immune disorders. I found her through the a CFIDS support group and the Co-Cure Good Doctor List (http://www.co-cure.org/index.htm).
After more than six years of my health getting progressively worse, thousands of dollars in medical and prescription bills, and many doubting or ignorant doctors ignoring my insistence that something was wrong, I finally have hope. It took two months to get an appointment with the wonderful doctor who finally diagnosed me, but it was worth it.
The next step is treatment. In addition to paying closer attention to my diet and myriad of vitamins and supplements, I'm going to start receiving weekly Glutathione/ATP injections for six weeks to try to correct my deficiencies. It is a bit on the controversial side, but if it works and I can actually function like a normal human being for an entire day, I couldn’t care less what anyone thinks about the injections. After we see how that goes, we'll reevaluate what to do next.
I am also planning to contact doctors who have treated me in the past few years so that I may send them information about CFIDS, as well as a copy of my medical record and blood tests. I don't want other patients going through what I've been through. The worst feeling in the world is having a doctor not believe or understand you.
Here are a couple of websites to visit to learn more about CFIDS.
http://www.cfids.org/
http://www.cdc.gov/ncidod/diseases/cfs/
Thanks for reading!
Take Care,
Alyson
I credit the Glutathione/ATP injections for allowing my health to improve enough for me to work full-time. I’m no longer on those particular injections because they became too painful to tolerate, but I am on different injections and other supplements…but that’s for another post.
Today's Activities: travel for work. Today's Most Annoying Symptoms: intermittent nausea and vertigo, exhaustion, muscle fatigue, sore muscles.
Mood (10 is best): 5
Energy (10 is best): 2
Physical Discomfort (10 is worst): 4
Tuesday, November 3, 2009
A Quick Hello
Thank you for all the support in response to my Headache post.
I just wanted to check in to say hello and let everyone know that I am feeling much better than I was on Sunday when I wrote that entry. I have been feeling headachy since then, but I haven't had any new migraines.
I am still processing what happened and will post an update on my next steps when I come up with some.
Today's Activities: travel for work. Today's Most Annoying Symptoms: headache, intermittent nausea, exhaustion, muscle fatigue, sore muscles.
Mood (10 is best): 5
Energy (10 is best): 2
Physical Discomfort (10 is worst): 4
I just wanted to check in to say hello and let everyone know that I am feeling much better than I was on Sunday when I wrote that entry. I have been feeling headachy since then, but I haven't had any new migraines.
I am still processing what happened and will post an update on my next steps when I come up with some.
Today's Activities: travel for work. Today's Most Annoying Symptoms: headache, intermittent nausea, exhaustion, muscle fatigue, sore muscles.
Mood (10 is best): 5
Energy (10 is best): 2
Physical Discomfort (10 is worst): 4
Sunday, November 1, 2009
The Worst Headache of My Life
Today I had a bit of a scare. Earlier today I became almost completely incapacitated because of a horrendous migraine headache and considered going to the emergency room.
I still can't move around too much without feeling nauseated or having my head pound.
This morning I flew from Texas to California for work. As usual, I slept for much of the flight. When I woke up as the plane was landing, I had a terrible headache. It got worse every second that passed.
As I stepped off the plane, all I could think about was taking something for the pain. I had one Tylenol and one Motrin left in my bag from my last trip, but I needed something to take it with.
My headache was getting worse so quickly that I didn't think I could make it all the way to baggage claim. I couldn't tolerate light or sound, and I was getting more and more nauseated. Luckily there was a gift shop near the gate, so I went in and purchased a juice and a snack to take my medicine.
I took the medicine immediately. Not wanting to leave my suitcase going around and around the baggage claim unattended, I slowly made my way to the baggage claim area.
As soon as I got my suitcase, I sat in the nearest chair and couldn't move without extreme pain. On a pain scale of 1 to 10 with 10 being extreme pain, I was at a 10. (I have only been at a 10 once before in my life, and that time resulted in a trip to the Emergency Room and a hospital stay.) The headache was so severe that I couldn't think straight.
All I could think about was the pain.
I was hoping the medicine would start working about 30 minutes after I took it. It didn't. I waited another 20 minutes. Still nothing. At that point, I dragged myself to the nearby giftshop and purchased another travel pack of Tylenol and Motrin. I went back to my chair and took one more Tylenol and Motrin. After another 40 minutes, my pain had slightly improved to a 9.
Though I've had migraines before, I've never had one this severe. Every sound felt like a dozen knives stabbing me. I had to cover my ears a few times as noisy people went by. I kept my eyes closed with sunglass on because the light was painful as well. I felt as if my head would explode. I was so out of it that at one point I thought the pain might kill me.
Sitting in the same chair at the airport for about an hour and a half with little relief from the extreme pain, I started to feel a little scared and alone. I also really wanted to get to my hotel so that I could lie down on a bed.
I ended up making a deal with myself. I would go to the hotel and lie down. If I continued to feel as bad, I would call an ambulance.
I made my way to the rental car shuttle bus and got on. I was the only passenger. As soon as we started moving, my pain went back up to a 10 and an extreme wave of nausea rolled over me. I knew I was going to vomit, but I couldn't open my mouth to tell the bus driver to stop.
I desperately started digging through my bag and found a small zip lock bag with some of my medicine in it. I dumped out the contents of the zip lock into my bag and proceeded to throw up in the zip lock uncontrollably. As far as I could tell, the bus driver didn't even notice. I sealed the zip lock just as we arrived at the rental car facility. As soon as I got off the bus, I tossed the contents into the nearest trash can.
Coca Cola sometimes helps settle my stomach when I'm nauseated, so I purchased one from the machine that was in the facility. I was obviously not well enough to hop in a car and drive, so I sat down in a chair while I sipped on my drink. The pain was at a 10. I contemplated asking someone to help me get an ambulance. I still couldn't think straight, but I knew I wanted to lie down on the bed in my hotel room.
I don't remember how much time passed before I got the strength to get up to find my rental car, but the pain had improved a bit to an 8. I think it must have been the combination of two Extra Strength Tylenol, two Motrin, and the caffeine in the Coke that was helping my headache.
I finally made it to my car and eventually got to the hotel. I was on the bed as soon as I entered the room.
My incapacitating headache lasted nearly four hours before I started to feel human again. My head still hurts a great deal, but it's not nearly as bad as it was earlier today. I would rate it at about a 6 at this time.
The worst part about all of this is that I am away from home traveling on business alone. I will not be home until Sunday, so I really hope I don't get another severe headache this week. Of course I'll be telling my doctor about this incident as soon as I get the chance.
Today's Activities: travel for work. Today's Most Annoying Symptoms: severe migraine, nausea, exhaustion, muscle fatigue, general weakness.
Mood (10 is best): 5
Energy (10 is best): 2
Physical Discomfort (10 is worst): 10 earlier today, currently 6
I still can't move around too much without feeling nauseated or having my head pound.
This morning I flew from Texas to California for work. As usual, I slept for much of the flight. When I woke up as the plane was landing, I had a terrible headache. It got worse every second that passed.
As I stepped off the plane, all I could think about was taking something for the pain. I had one Tylenol and one Motrin left in my bag from my last trip, but I needed something to take it with.
My headache was getting worse so quickly that I didn't think I could make it all the way to baggage claim. I couldn't tolerate light or sound, and I was getting more and more nauseated. Luckily there was a gift shop near the gate, so I went in and purchased a juice and a snack to take my medicine.
I took the medicine immediately. Not wanting to leave my suitcase going around and around the baggage claim unattended, I slowly made my way to the baggage claim area.
As soon as I got my suitcase, I sat in the nearest chair and couldn't move without extreme pain. On a pain scale of 1 to 10 with 10 being extreme pain, I was at a 10. (I have only been at a 10 once before in my life, and that time resulted in a trip to the Emergency Room and a hospital stay.) The headache was so severe that I couldn't think straight.
All I could think about was the pain.
I was hoping the medicine would start working about 30 minutes after I took it. It didn't. I waited another 20 minutes. Still nothing. At that point, I dragged myself to the nearby giftshop and purchased another travel pack of Tylenol and Motrin. I went back to my chair and took one more Tylenol and Motrin. After another 40 minutes, my pain had slightly improved to a 9.
Though I've had migraines before, I've never had one this severe. Every sound felt like a dozen knives stabbing me. I had to cover my ears a few times as noisy people went by. I kept my eyes closed with sunglass on because the light was painful as well. I felt as if my head would explode. I was so out of it that at one point I thought the pain might kill me.
Sitting in the same chair at the airport for about an hour and a half with little relief from the extreme pain, I started to feel a little scared and alone. I also really wanted to get to my hotel so that I could lie down on a bed.
I ended up making a deal with myself. I would go to the hotel and lie down. If I continued to feel as bad, I would call an ambulance.
I made my way to the rental car shuttle bus and got on. I was the only passenger. As soon as we started moving, my pain went back up to a 10 and an extreme wave of nausea rolled over me. I knew I was going to vomit, but I couldn't open my mouth to tell the bus driver to stop.
I desperately started digging through my bag and found a small zip lock bag with some of my medicine in it. I dumped out the contents of the zip lock into my bag and proceeded to throw up in the zip lock uncontrollably. As far as I could tell, the bus driver didn't even notice. I sealed the zip lock just as we arrived at the rental car facility. As soon as I got off the bus, I tossed the contents into the nearest trash can.
Coca Cola sometimes helps settle my stomach when I'm nauseated, so I purchased one from the machine that was in the facility. I was obviously not well enough to hop in a car and drive, so I sat down in a chair while I sipped on my drink. The pain was at a 10. I contemplated asking someone to help me get an ambulance. I still couldn't think straight, but I knew I wanted to lie down on the bed in my hotel room.
I don't remember how much time passed before I got the strength to get up to find my rental car, but the pain had improved a bit to an 8. I think it must have been the combination of two Extra Strength Tylenol, two Motrin, and the caffeine in the Coke that was helping my headache.
I finally made it to my car and eventually got to the hotel. I was on the bed as soon as I entered the room.
My incapacitating headache lasted nearly four hours before I started to feel human again. My head still hurts a great deal, but it's not nearly as bad as it was earlier today. I would rate it at about a 6 at this time.
The worst part about all of this is that I am away from home traveling on business alone. I will not be home until Sunday, so I really hope I don't get another severe headache this week. Of course I'll be telling my doctor about this incident as soon as I get the chance.
Today's Activities: travel for work. Today's Most Annoying Symptoms: severe migraine, nausea, exhaustion, muscle fatigue, general weakness.
Mood (10 is best): 5
Energy (10 is best): 2
Physical Discomfort (10 is worst): 10 earlier today, currently 6
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