Controversy & Needing a Laugh

After reading about a recent controversy in the CFS community, I was saddened by all the anger on both sides.

In a nutshell, a dramatic ME/CFS recovery story was posted online, and a few ME/CFS patients reacted negatively and vehemently. They felt the recovery story was too good to be true (which it may be) and that "miracle stories" as a result of alternative treatment shouldn't be touted so publicly (it should be noted that the actual treatment was not explained in the story).

I don't know what to believe, as I don't personally know the patient. However, I have not taken any sides. If the story is true, then I'm thrilled that someone has come back to life from such awful health. It gives me hope for a complete recovery. If it is not true, then I'm disappointed that someone would give such false hope to a community that is so desperate for hope.

After all the heavy philosophical thinking I did as a result of the controversy, I decided I needed a laugh. Here are a few of the websites I visited to lift my spirits:

FAIL Blog: photos and videos of things that miss the point or are just plain wrong (Warning: some of the photos and videos can be considered offensive; you have the option to see G-rated images only)

I Can Cheezburger: funny and cute cat (and other small furry animal) pictures

I Has a Hotdog: funny and cute dog pictures

Engrish: funny English mistakes (I used to live in Japan, and there really are all sorts of mistakes like these everywhere)

Today's Activities: work. Today's Most Annoying Symptoms: one asthma attack, chest pain, diarrhea, exhaustion, mild headache, active eczema on right ankle.

Mood (10 is best): 6

Energy (10 is best): 3

Physical Discomfort (10 is worst): 4

National Fatigue Survey (US only)

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: two asthma attacks, exhaustion, mild headache, cracked left side of lip, active eczema on right ankle.

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

Mono and CFS in Teens

I just got back some belated blood test results and was told that I had high EBV levels at the time of the test (a few weeks ago) -- see Human Pincushion for background on all my recent blood tests.

My doctor used the term "chronic mono" to describe my results. This is the first time she's used that term when describing my EBV levels.

I think my having chronic mono explains a few things, like the fever I was running at the time of this test. I'm also convinced that the chronic mono and my case of CFS are connected. I'm not willing to say that one caused the other, but I am certain that there is some sort of relationship.

I came across an interesting article when I was trying to do a little online research about "chronic mono":

"Mono" linked to chronic fatigue syndrome in teens (Shared via AddThis)

On the upside, my glutathione levels were a bit higher than my last test and there didn't seem to be anything odd about my HHV6 levels. On the downside, my ATP (cyclic-AMP) levels were down by a lot. No wonder I've been soooo tired lately (that is, more than usual).

Today's Activities: work and running errands. Today's Most Annoying Symptoms: exhaustion, mild headache, cracked left side of lip, active eczema on right ankle.

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

A Good Point About My Symptoms

A new person visited my blog the other day and posted the following comment which made a good point:

Hi! I've been reading random blogs lately and I had a question about your symptoms that you list at the end of entries. This one, for example: Exhaustion, mild headache, profuse sweating, eczema. NOT to imply that those aren't hard to deal with, but do you have other symptoms that you do not list because it would be too many? Or is "that all"? I put quotations because online that could really come across the wrong way and that's not what I mean. Thank you. =) ~fellow chronic illness sufferer

Here is the response I gave:

Thanks for the comment. You bring up a good point. You're right. Those aren't ALL my symptoms; they're just the ones that are annoying me the most at the time of my post.

In addition to the ones that I've listed, I also constantly deal with all the symptoms related to all my other conditions like asthma, severe allergies, insomnia, irritable bowel syndrome, sores in my mouth, fungal infections, and of course all the other symptoms that are more directly associated with CFS (like mental fog, impaired memory, tinnitus, sensitivity to temperature, sensitivity to light and sound, dizziness, nausea, muscle twitching, and unrelenting fatigue).

I suppose I've just gotten used to being sick all the time, that I sometimes "forget" all the symptoms that I am actually dealing with on a daily basis. You can learn much more about all my health issues by reading my May 2009 entries.

Thank you for helping me realize that some people who don't understand what it's like to live with chronic illness might see my daily listed symptoms and think they're "no big deal." I will try to be clearer from now on.

Another blogger with CFS responded with:

It's amazing how many symptoms we have that we don't even think about anymore because they are like the soundtrack to our lives...

It makes me so sad to think of the things we've lost...but on the other hand I think life doesn't turn out as planned for a lot of people.

However, when I contrast my obstacles/challenges with chronic illness to the challenges of most my peers, I would trade the chronic illness in any day!

I concur. It is amazing how many symptoms I don't even think about anymore. They are indeed "the soundtrack" to my life. Today I was hyperaware of my "soundtrack" symptoms and noticed a few more that I take for granted, so to speak.

I experience severe muscle fatigue every time I go up or down a set of stairs. My heart will be pounding by the time I make it to the top (or bottom), and I am always out of breath after a climb. Skin from all over my body constantly flakes off my arms, legs, and head in a light, but noticeable dandruff. This is especially noticeable when I wear black clothes. It can be embarrassing.

My hands show visible signs of eczema, with pitting covering my right thumb nail. I have additional eczema spots on other parts of my body (especially my legs), but none are as annoying as the one on my right ankle. If you've never had eczema, just imagine intense itching that is always present. Medications can treat acute flare ups, but they almost always come back and there are always new flare ups in new places. Because my skin often does not heal well, I have scars all over my legs from eczema flare ups that I scratched (and made bleed) one too many times.

Though I am on a moderately high dose of daily asthma medication (Advair 250/50), I still have regular asthma attacks. They are quite exhausting.

I usually have some sort of pain somewhere in my body at any given time. For me the most annoying pain is a headache, but I also get traveling pain through my arms and legs. As a result of IBS, intestinal pain is a common companion. I also regularly run low-grade fevers.

The symptoms that have robbed me of my 20's and starting to steal my 30's is the post exertional malaise and unrelenting fatigue. These two seemingly innocuous symptoms are what keep me from having much of a life. They are the symptoms that challenge and frustrate me the most.

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, mild headache, active eczema on right ankle.

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

Childhood Dreams

It occurred to me the other day that I don't actually know what it's like to be a healthy adult. Believe it or not, this realization was startling to me.

Most of my chronic problems like asthma started around age 18, and I continued to develop even more chronic conditions like eczema and IBS throughout my 20's. I'm pretty sure the CFIDS started around age 20 or 21.

At least I had a pretty normal childhood.

When I was a little girl, I told my parents that I wanted to be a doctor, a lawyer, and a fireman. I also wanted to be married by age 24 and have two children before I was 30 -- preferably one boy and one girl.

I never actually became a doctor, a lawyer, or a fireman; though of all these occupations, I came closest to becoming a doctor. Two years after I completed my bachelors degree, I enrolled as a postbaccalaureate student at the local college to complete the prerequisites to apply to medical school.

This was the year I suffered from chronic strep throat infections and had a tonsillectomy complete with complications. I had to take a medical withdrawal. Little did I know I was also suffering from a full-blown case of CFIDS. Interestingly enough, this was the year that I met my now husband. Compared to when he first met me, I'm much better!

As far as my other childhood "goals" go, I got married to Kenny at age 26 -- only two years "late." I'm 30 now, but we don't have any children.

I still want children very much with all my heart. We both do. The main reason we don't have any now is because of my disease. I am terrified of having a child that I cannot take care of due to illness. The amount of energy it takes to care for a child is immense and exhausts even the healthiest of parents. The last thing I want to do is to bring a child into this world who has a mommy too sick to move.

We are waiting until I get well before we try to have children. Of course, we don't even know if I'm able to have children because of my polycystic ovarian syndrome (PCOS). If I can't have my own kids, we'll adopt. We've already decided that.

Now all I have to do is get well!

Today's Activities: work (with more walking around than usual). Today's Symptoms: exhaustion, mild headache, profuse sweating; active eczema on right ankle.

Mood (10 is best): 6

Energy (10 is best): 3

Physical Discomfort (10 is worst): 3

A Lost Weekend

I can't believe it's already Sunday afternoon. CFIDS has stolen another one of my weekends.

I slept all day Saturday, only getting out of bed to shower and eat. Today is a little better because I've got slightly more energy and have been able to watch a little TV and chat with my husband, Kenny.

I'm hoping I'll feel better by next weekend because I'd really like to go out on a date with Kenny. Going out to eat or going to the theater to see a movie are about the only kinds of dates I can tolerate because I can sit the entire date (though even movies are sometimes too much to handle because of their volume and because I have to focus to follow the plot). Everything else takes up too much energy.

I can't wait to get well.

Today's Activities: home. Today's Symptoms: exhaustion, mild headache, moderate cramping (due to menstruation), profuse sweating; active eczema on right ankle.

Mood (10 is best): 5
Energy (10 is best): 3...but yesterday was a 2
Physical Discomfort (10 is worst): 6

A Physically Challenging Two Weeks

Disclaimer: Since this blog is about living with chronic illness, I have made the commitment to write about all aspects of this part of my life including my symptoms (the good, the bad, and the ugly). This post includes some of the "ugly" symptoms.

The past couple of weeks have been physically challenging. I had an energy crash midway through last week and am still struggling to get back to my "normal" tired but not exhausted energy levels.

I have had varying degrees of headaches every day for the past week. Fortunately, none of the headaches have turned into migraines (which can sometimes put me out of commission altogether). The last few days I have been able to fall asleep pretty easily, yet I've had trouble sleeping through the night -- waking up at least three times per night. The mornings have been dreadful; it's been extremely difficult (more than usual) for me to get up.

To add insult to injury, last night I started my period with an explosion of cramping and heavy bleeding (which certainly doesn't help my iron levels)...which has continued today. When the cramping is really severe, it forces a bowel movement. The combination of my having PCOS (polycystic ovarian syndrome) and IBS (irritable bowel syndrome) can be particularly unpleasant.

On the upside, the consistency of my bowel movements have been much more normal the past couple of weeks. That is, I have not had much constipation or diarrhea. As a result, my hemorrhoids have had time to heal (finally). I suspect my increased doses of acidophilus probiotic supplements and increased intake of yogurt combined with fiber supplements has helped the IBS and consistency of my bowel movements. I'm also convinced that the acidophilus has decreased the frequency of the vaginal yeast infections that I get.

These little milestones -- normal bowel movements, healed hemorrhoids, and fewer yeast infections -- have improved my quality of life somewhat. I'll take every bit of an increased quality of life that I can get...even if it's just baby steps. (Though I would really like to improve in all areas, rather than getting better in some areas and worse in others.)

I am hopeful that I'll start feeling a little better once my period ends.

Unfortunately, however, I suspect that my poor energy levels might be related to my new treatment plan (see Starting a New CFS Treatment Plan). There were tons of warnings that the treatment could make people feel worse at first. I was hoping that my experience would be different, but I think it's safe to say that my last two weeks would fall under the category of "feeling worse." I suppose only time will tell. For now, I'm not going to modify my treatment plan.

Today's Activities: work (with more walking around than usual). Today's Symptoms: exhaustion, moderate headache, mild nausea; severe cramping (due to menstruation); active eczema on right ankle; rash on back and abdomen almost gone.

Mood (10 is best): 5
Energy (10 is best): 3
Physical Discomfort (10 is worst): 7

ME/CFS Sleepydust Video

This video was created by sleepydust.net especially for family and friends of those with CFS/ME.

Today's Activities: work. Today's Symptoms: exhaustion, moderate headache with sharp pains on right side of head; active eczema on right ankle; rash on back and abdomen almost gone.

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

Faith and Spirituality

I intentionally don't discuss religion in my blog because I want people of all faiths, cultures, and backgrounds to feel comfortable when they enter my world. Religion, after all, has caused conflict since the beginning of humanity. My own extended family includes people of different religious faiths or no religion at all. My philosophy is that we are all human.

Still, I thought it would be interesting if I included this one entry about faith and spirituality.

Though I do associate myself with a particular religious group, I do not attend regular services. Because of my CFIDS, being around groups of people (which usually equals a large amount of noise) can be overwhelming. My attention span leaves much to be desired, and it requires an exorbitant amount of physical and mental energy to make "small talk" with anyone other than my husband.

I consider myself more of a "spiritual person" rather than a "religious person." I think there are many beautiful religions out there that have something to teach us. I believe that everything happens for a reason (even the bad things), though we still have the free will to choose our actions. I believe we should treat others how we want to be treated. I think there is something to be said about karma. I think Gandhi, Mother Theresa, and the current Dalai Lama are people to be admired. I believe in peace and tolerance. I also believe in the power of positive thinking.

Now, I don't want to give the impression that I live in some sort of la-la-land of pink bows, fluffy clouds, and sunshine 24-7. I am very aware of all the bad and scary things out there, including hate, war, and disease...especially the disease part.

I suppose what I'm trying to express in this stream-of-consciousness entry is that my world would be a much darker and more depressing world if I didn't hold onto the belief that I have CFIDS for a reason. I'm still trying to figure out what the reason is, but I'm starting to get an inkling.

I'm more compassionate now than I was before I got sick. I used to be one of those people that might say, "but you don't look sick." I'm more patient with others because I've had to learn to be patient with myself. I'm also trying to be an advocate for people with this disease by writing government officials and the media about CFS. I have opened up my life to the world by writing this blog so that more people (including my own family) could better understand CFS.

Of course, if I had a choice, I'd "give back" the CFIDS.

Today's Activities: work. Today's Symptoms: exhaustion, mild headache; active eczema on left underarm and right ankle; rash on back and abdomen healing.

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

The Healing Power of Pets

I would like to introduce our cat, Callie.

Growing up, I was definitely NOT a cat person. I thought dogs were much better suited for playing and cuddling; cats seemed more aloof and, well, boring.

I also thought I was allergic to cats, especially considering I'm allergic to all types of things (and cats are one of the most common triggers for people with allergies).

Then about six years ago I met my husband's parents' cat, Kitty Kitty. He (yes, he) had some tendencies that were dog-like. He even played fetch. I started to like him so much that I thought perhaps cats weren't that bad, after all.

Around that time I discovered that (according to the extensive allergy testing I had) I'm not allergic to cats (though, of course, that's not to say I won't develop an allergy in the future).

A couple of years ago my husband and I decided we would get a cat. We went to look at rescued cats and picked out the cutest little kitten with the biggest personality. We named her Callie because she is part calico (she's got a few calico markings on her back, head and tail; her belly is completely white).

The photo above is my favorite photo of Callie from when she was still a kitten. She's a bit bigger now but just as cute.

Callie loves to cuddle when it's cold or when she's sleepy. Sometimes she'll sleep with me at night. She even has a few dog-like tendencies. She greets us at the door when we come home, and she plays fetch with her little mouse toys on occasion.

I never imagined what a huge impact Callie would have on our lives -- on my life.

Having CFIDS, I end up having to stay at home a lot. When my husband is home, too, being at home is really not a big deal. Staying home alone, however, can lead to boredom or loneliness. It's the loneliness that was especially unpleasant. Since getting Callie, she makes it impossible to be bored or lonely. I'm happier and more relaxed than before we got Callie.

There is actually some research about the phenomenon I've experienced:

American Journal of Critical Care

Discovery Health1

Discovery Health2

Psychology Today

Natural Health

About.com

Today's Activities: work. Today's Symptoms: exhaustion, mild nausea, mild headache; active eczema on left underarm and right ankle; rash on back and abdomen healing.

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

Just Resting

I've spent most of this weekend just resting (except for this morning when I went to coffee with a friend who will be moving to another state).

I'm feeling better now than I was a few days ago. I slept 11 hours last night and took a nap this afternoon. My body has appreciated all the sleep I've gotten since Friday night.

I'm going to make a greater effort to use less energy this week.

I have to admit to myself that I overdid it last week. At work I got up one too many times from my desk and walked around much more than usual. I also ended up doing a bit more than my share of work because we are currently shorthanded. At home I walked up and down the stairs more than usual because I kept forgetting this or that or just wanted to get on the computer.

Bad me! I should know better. After dealing with CFIDS for nearly a decade (and having been bedridden and unable to have a full-time job for two of those years), one would think that I'd know my boundaries by now. I do, but I don't always adhere to them. Though my body acts like it's 100 years old, my mind is still young and thinks young thoughts. It easily "forgets" that I can't go out and behave like a normal 30 year old.

It's the energy crashes that shock me back to reality. Bad CFIDS!

This week I'm going to conserve my energy. Period. No excuses allowed.

Based on a fellow patient's excellent suggestions, I'm going to start giving a score to my symptoms. Eventually, I'll start an actual symptom diary on some sort of spreadsheet (once I work up the mental energy to put one together). For now, I'm going to list things on my blog.

Today's Activities: coffee with friend, rest at home. Today's Symptoms: exhaustion, nausea, mild headache; active eczema on left underarm and right ankle; rash on back and abdomen healing.

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

End of the Week Energy Crash

I started crashing on Wednesday.

I made it to work every day this week, but it got harder and harder as the week progressed. Making it through the day became an Olympic sport by Friday. My brain fog has been awful. On Thursday on my drive home from work, I missed a couple of turns which made my drive longer than usual.

I was having trouble with my insomnia at the beginning of the week, but by Wednesday night I was falling asleep quite quickly because I was so exhausted. Last night I passed out around 8:30PM and didn't wake up today until close to noon (that's almost 16 hours of sleep). My husband had to help me sit up in bed to eat a little breakfast this morning before I had enough energy to take a shower. I've been half asleep on the couch since then.

I'm not sure if the crash is a delayed reaction from my trip to Utah, a reaction to the new treatment protocol I started this week, or because I had a busier work week than usual.

Who am I kidding? It's probably all of the above and more.

Now that I've started my new treatment plan, I've decided to start tracking my symptoms by listing them on every blog entry. Doing this is mentally easier for me than trying to start a symptom diary...even though I realize it's pretty much the same thing.

So here it goes.

Today's Symptoms: exhaustion, muscle fatigue, brain fog; rash on back and abdomen still present but healing; active eczema spots near both underarms and right ankle; mild headache; mild diarrhea.

Advocacy Alert: Federal Research Public Access Act

This just in from the CFIDS Association Grassroots Action Center Listserv:

Help free the data!
Voice your support for open access to research

Ask your Senators to co-sponsor FRPAA (S. 1373)

Take Action!

On June 25, Senators Lieberman (I-CT) and Cornyn (R-TX) introduced the Federal Research Public Access Act (S.1373), a bill that would ensure free, timely, online access to the published results of research funded by eleven U.S. federal agencies. S.1373 would require those agencies with annual extramural research budgets of $100 million or more, including the Centers for Disease Control & Prevention (CDC), to provide the public with online access to research manuscripts stemming from such funding no later than six months after publication in a peer-reviewed journal.

The bill specifically covers unclassified research funded by agencies including: Department of Agriculture, Department of Commerce, Department of Defense, Department of Education, Department of Energy, Department of Health and Human Services, Department of Homeland Security, Department of Transportation, Environmental Protection Agency, National Aeronautics and Space Administration,
and the National Science Foundation.

S. 1373 reflects the growing trend among funding agencies - and college and university campuses - to leverage their investment in the conduct of research by maximizing the dissemination of results. It follows the successful path forged by the NIH's Public Access Policy, as well as by private funders like the Wellcome Trust, and universities such as Harvard and MIT.

Detailed information about the Federal Research Public Access Act is available at http://www.taxpayeraccess.org/frpaa. This is one step toward gaining greater public access to original data funded with taxpayer funds, data such as CDC has accumulated for 25 years on chronic fatigue syndrome.

All supporters of public access - patient advocates, consumers, universities and colleges, researchers, libraries, campus administrators, publishers, and others - are asked to ACT NOW to support this bill.

This information is provided by the Alliance for Taxpayer Access, of which the CFIDS Association of America is a member.

Take action now! It's really easy to do and doesn't take much time. It took me less than a minute to fill out and submit.

Isn't It Ironic?

I still enjoy singing along to Alanis Morissette's song Ironic whenever I hear it on the radio (every once in a blue moon). Isn't it ironic?

I was thinking about a few things on my drive home from work today, and a couple of ironies popped into my mind.

First, why is it that so many people with Chronic Fatigue Syndrome have insomnia and other sleep problems? It seems like a cruel joke. I, myself, have had bouts of insomnia on and off for the past several years. While my insomnia seemed to have gotten better for a while, the past few days have been especially challenging. I've alternated between having trouble falling asleep and having trouble staying asleep.

I also think it's ironic that I've been losing my hair because I've actually been trying to grow it out to donate it to an organization called Locks of Love that provides wigs to kids who have lost their hair. I haven't gotten a real hair cut since June of 2008. On a side note, I think the hair loss is finally slowing down (knocking on wood) because not as much hair has come out today.

Isn't it ironic?

Starting a New CFS Treatment Plan

I started a new CFS treatment plan yesterday. It's the one by Dr. Rich Van Konynenburg that I mentioned in a previous post. The official name of the treatment is "Simplified Treatment Approach Based on the Glutathione Depletion- Methylation Cycle Block Pathogenesis Hypothesis for Chronic Fatigue Syndrome." There are some preliminary research results on the treatment plan. They look very promising.

My doctor approved this treatment before I left for Utah.

Here's the treatment plan:

1. One-quarter tablet (200 micrograms) Actifolate (Folapro is 5-methyl tetrahydrofolate, an active form of folate, which is sold by Metagenics with a license from Merck, which holds the patent on synthesis).

2. One-quarter tablet Intrinsic B12/folate (This includes 200 micrograms of folate as a combination of folic acid, 5-methyl tetrahydrofolate, and 5-formyl tetrahydrofolate, also known as folinic acid or leucovorin (another active form of folate), 125 micrograms of vitamin B12 as cyanocobalamin, 22.5 milligrams of calcium, 17.25 milligrams of phosphorus, and 5 milligrams of intrinsic factor).

3. Up to two tablets (It's best to start with one-quarter tablet and work up as tolerated) General Vitamin Neurological Health Formula from Holistic Health Consultants (This is a multivitamin, multimineral supplement with some additional ingredients. It does not contain iron or copper, and it has a high ratio of magnesium to calcium. It contains antioxidants, sometrimethylglycine, some nucleotides, and several supplements to support the sulfur metabolism.)

4. One softgel capsule Phosphatidyl Serine Complex (Vitamin Discount Center)(This includes the phospholipids and some fatty acids)

5. Activated B12 Guard (Perque) (2,000 micrograms hydroxocobalamin with some mannitol, sucanat, magnesium and cherry extract)

After reading all the cautions, I decided to start out slowly by taking the supplements every other day for the next week or two...depending on how I feel. I am taking the recommended 1/4 tablets of the Actifolate and the Intrinsic B12/folate, 1/4 tablet of the Neurological Health Formula, and the recommended 1 softgel of the Phosphatidyl Serine Complex. However, rather than taking a full pill of the Activated B12 Guard, I am taking a 1/2 pill.

The last thing I want is a major energy crash.

As far as I can tell, I don't feel much different today than I did before I took yesterday's dose...though I did have a major bout of diarrhea this afternoon (which could actually be from my irritable bowel syndrome or from what I ate at lunch) and I'm fighting off a major headache (which could be from anything). I'm also REALLY tired, but that's probably because I had trouble sleeping last night.

Since I'm listing my current symptoms, I might as well mention that I'm also trying to get over a mild rash on my back and abdomen that appeared on Thursday in Utah. I suspect it was an allergic reaction to a detergent we used on Wednesday when we washed our clothes. I feel like I develop new allergies all the time.

There's always something wonky going on with my body. It's really kind of annoying.

Here's hoping that this new treatment plan is successful!

Utah 2009 Photos by Alyson and Kenny

To Utah and Back

My husband Kenny and I got back from Utah last night. It's good to be home.

I am grateful to my parents for having invited us to travel with them to Utah. Without their generous financial support, we would not have been able to go. Thanks, Mom and Dad!

I slept through most of the day today and feel pretty good. I woke up for breakfast, watched a little TV, then went back to sleep until after 4pm. I've been watching TV since then.

My body is very tired and my muscles are a little sore, but my lymph nodes feel OK and I don't feel ill. I think this means I survived this trip without a major crash. Hooray! I think the only reason I'm not worse off is because we really did take it easy on this trip (for the most part).

It always takes me quite a bit of self restraint for me to "take it easy" whenever I travel. My nature is to be adventurous and physically active. The CFIDS forces me to go against my nature. When I overexert myself, I pay for it with days -- and sometimes a week or more -- of extreme exhaustion and malaise. When it's really bad, I can't get out of bed. I have learned the hard way to slow down my pace.

While on this trip, I wanted to ride a hot air balloon, go white water rafting, ride horseback, and go shopping at the outlet mall. Of course, I didn't do any of those things because they would have exhausted me beyond belief, but it was fun (and a little melancholy) thinking about them. (I can't wait until I'm healthy again.)

Instead, we chose activities that were a little less taxing: riding a ski lift round-trip (which involved sitting on a slowly moving bench up and back down a mountain) and riding a zip line (which involved being strapped to a cloth seat and flying down a ski hill). Those were my most exciting activities for the week.

I'm lucky that my parents and husband are so supportive. They allowed me to set the pace and choose the activities for the entire trip. We had late starts every morning and ended each day right after dinner. There were plenty of opportunities for daily naps, and the naps ranged from less than an hour to up to four hours.

When I didn't feel well enough to go out, we didn't go out. Whenever we drove anywhere, my dad would drop me off at the entrance before parking so that I wouldn't have to walk too much. When we visited Zion National Park, we were able to tour the park by shuttle bus (the Zion Canyon Scenic Drive shuttle, to be exact). The bus made my visiting a national park possible. (The photo at the top of this post is a picture my husband took at Zion.)

Overall, this trip was wonderful and frustrating all at the same time. I was able to do quite a lot, yet I was still so limited by my CFIDS.

I clearly remember what it was like to be completely incapacitated by this disease -- from ages 24-26, I was bedridden and slept 16 to 20 hours per day. A trip like this one would have been unimaginable. Yet compared to what life was like before I got sick, there is still so much I cannot and should not do...or else my body will rebel.

I'm ready for a cure.

Mini Energy Crash

I finally had a small energy crash yesterday.

Amazingly, it wasn't that bad... in fact, it was almost nothing...considering how much we've been doing in Utah.

Yesterday I slept in until 10am, ate breakfast, lounged around the hotel room (that's when I wrote yesterday's blog entry), ate lunch, rode a ski lift (my first time!), took a four-hour nap, ate dinner, watched a movie on the TV in our hotel room, then went to bed.

Today I slept in until 10:30am, ate breakfast, took a nap, ate lunch, went to visit the Utah Olympic Park in Park City and rode a 100+ meter-long zip line (it was crazy fun!), had a brief rest at the hotel, got an hour-long and very relaxing Swedish massage (my first!), then went to dinner. I'm about to pass out from exhaustion, but I felt the need to write.

I feel like a more severe crash may be coming (my lymph nodes have been feeling funny today...not bad, just a bit strange), but at least I still have the weekend to sleep before I have to go back to work. We're flying back home tomorrow, so I'll get to sleep in my own bed. I'm hoping that by doing absolutely nothing the rest of the weekend, I'll ward off any sort of major crash.

All in all, my first time in Utah has been worthwhile and meaningful. Our trip to Topaz was sobering, the time with my parents who live in another state was special, the vacation time with my husband was lovely, and all the fun activities I was able to do was precious (because my energy levels control my life, and I never know if I'll be able to participate or if I have to be left out of activities).

Thanks, Utah!

An Ugly Lesson in US History

My mother, a Japanese-American, was born in the Topaz Internment Camp (located near Delta, Utah) where her parents (also born in the United States) and extended family were incarcerated during World War II...simply because they were of Japanese descent.

To be clear, the term "internment camp" may be used interchangeably with "concentration camp." However, because of the negative connotation of "concentration camp," the more innocuous sounding term "internment camp" is used as a euphemism to make this egregious violation of American civil rights sound less offensive.

We made a family pilgrimage to the internment camp this week. This is why we came to Utah.

There is nothing much left of the interment camp. All the buildings were dismantled and sold by the US government not long after Topaz was closed in 1945. Afterward, any remaining items of value were stolen and sold for profit.

Once the size of a small city spanning over 18,000 acres, all you can see now when you visit the site is a desolate, dusty, and dry desert plain with scattered and rotting wood planks, a few cement foundations, and lots of rusty nails everywhere.

We were able to find the site of the Topaz hospital where my mother was born.

Most US history books gloss over the American concentration camps because they are such an embarrassment to our government. Many Americans still don't know anything about what happened to our own people. The only reason I learned about them was because my mother told me when I was a child about what happened. My husband Kenny doesn't remember learning anything about the internment until he was in college.

People were given only a brief warning before they were forced out of their homes, allowed to bring only what they could carry.

It's really pretty shocking.

To learn more about the Topaz Internment Camp and the Japanese American internment in general, check out the following links:

Topaz Internment Camp Official Site

Smithsonian National Museum of American History

National Park Service

Wikipedia

The painting at the top of this post was created by my great-grandmother who was interned at Topaz. It depicts the desert conditions of the camp.

Update on July 12, 2009: I added a photo slideshow from our trip to Utah. It's under the post Utah Photos by Alyson and Kenny. Many of the photos are from the Topaz site.

Greetings from Utah!

I'm back online!

I'm in Utah this week on a trip with my husband and parents, and today is the first time I've had the chance to get online (I'm borrowing someone else's computer). The trip has been grueling because we've been all over the state, including Salt Lake City, Park City, Delta, Topaz, and Zion National Park. Fortunately, I haven't had to drive and have been able to sleep a lot between cities. I'll talk about why I'm in Utah in another post.

I'm still tired all the time, but I haven't had any sort of crash...yet. My energy seems to be holding up, but I'm being cautiously optimistic. I'm taking lots of naps, and I'm not walking around and exploring nearly as much as my husband and dad are doing. My mom's been great keeping me company when hubby and dad wander off.

I'm glad that I was able to get a glutathione IV (for my CFIDS) and a Glyceron Plus shot (also for CFIDS) right before we left for this trip. I think they helped bolster my energy levels a bit.

And now a random story from my trip:

A funny thing happened at a McDonald's in Delta, Utah (population: 3,209). We met THE Ronald McDonald clown -- the actual one who is in the Macy's Thanksgiving Day Parade every year (or so he says). Apparently, this guy travels the country making special appearances at schools and other educational venues throughout the country...and, of course, he also visits local McDonald's.

You can see Mr. McDonald himself in the photo above with my husband, Kenny.

Moving in Slow Motion

I feel as though I live much of my life in slow motion.

If I'm lacking either physical or mental energy at any given time (which is pretty much all the time), it takes me a million times longer to get anything done.

Today, for example, it took me all morning to summon enough energy to take a shower and get dressed, and the only reason I'm on the computer right now is because I needed to check my flight information.

---s-l-o-w---m-o-t-i-o-n---

I'm also having trouble thinking.

I really want to take a nap, but I need to finish packing for my trip.

My pillow is calling my name, but I must resist...

.....ssssssloooow.....mmmmmooootion.....

I really need to get moving.

By the way, Happy Fourth of July!

My Very First Vasovagal Reaction

I get so many injections, blood tests, and IV treatments that I am not afraid of needles or blood. There was even a period in my life that I wanted to be a doctor (the CFIDS made that dream impossible because of the physical demands of medical school).

I also happen to be unlucky enough to have small and difficult-to-find veins. This means that I am not a stranger to being poked more than once to find a good vein for blood tests or IV treatments. It's usually not a big deal when someone has missed my vein and has to try again.

Unfortunately, today my body thought otherwise.

If you read my blog from yesterday, you'll know that I've been poked a lot this week. Today the nurse was able to get the IV needle into a vein in my right arm after the first attempt. The problem was that she put the needle near where I had recently had blood drawn, so the whole area was feeling particularly sensitive. We agreed that she would remove the needle and try my other arm.

My left arm is not exactly a hot spot for easy-to-access veins.

She inserted a fresh needle into my left arm and didn't find anything. She ended up trying to move the needle around while it was still in my arm with the hope that she would hit the vein she had been aiming for. No luck.

After taking a look at my hands, she decided that she would try a nice, juicy vein in my right hand. I'm not a fan of needles in the hand because they tend to hurt more, but I really didn't want a needle back in my already sore "good vein" in my right arm. She easily got the needle in my hand.

It was right around that time that I suddenly felt dizzy, sweaty, and nauseated. I also had the sensation that my heart was beating quickly, but when I felt my pulse it was actually beating slowly. My legs felt really heavy, and I looked very pale. I told the nurse that I felt like I had to throw up.

I was having what appeared to be a textbook vasovagal reaction.

After closing my eyes and putting my feet up for a while, I started to feel better. I'm sure the IV fluids also helped. I felt pretty embarrassed because this has never happened to me before. The nursing staff was great because, after making sure I was OK, they didn't make a big deal out of it.

Between my multiple blood tests and the three pokes for my IV treatment today, I've got half a dozen fresh needle marks in my arms. It's not especially attractive. If you didn't know me, you might think I was using drugs.

Ah, well. It's all for a good cause, right? My health.

Human Pin Cushion (Now What Continued)

I feel like a pin cushion.

Just this week, I've had my blood drawn on three separate occasions. This afternoon I got my usual two allergy shots (one in each arm). Earlier this week I had my weekly Glyceron Plus injection for my CFIDS and will be having a glutathione IV treatment tomorrow (also for my CFIDS). I suppose it's all for a good cause: helping me on the path back to good health.

And some people wonder why I stopped my acupuncture treatments! (If you're still wondering, it's because I got tired of all the extra poking.)

I've already gotten my results back from the blood test on Monday. My vitamin D level has gone up from 29 several months ago, to 41 about a month or two ago, to 49. Yeah! I've been on 1,000 IU of the stuff for months, so it's nice to see my numbers improving. The goal has always been to get my number to 50, so we're pretty much there.

Unfortunately, it's now official that my iron level has gone down. It started at a mere 17 earlier this year and went up to 50 about a month or two ago, but it's gone down to 41. Boo! Well, at least it's still safely above 17.

I'm looking forward to receiving the results of my comprehensive micronutrient blood test that I got done Wednesday morning. I think it will be interesting to see if I am missing any essential vitamins or minerals.

My appointment with my regular doctor yesterday afternoon was productive. I've been running a low-grade fever on and off for about the last two weeks. I've also been having problems processing what people are saying lately. My doctor thought this was likely due to my CFIDS, as opposed to anything else (I had an MRI less than a year ago which ruled out MS and other brain problems). Some of her other CFIDS patients have described similar issues comprehending people. When I discussed my hair falling out, she also thought it might have something to do with my CFIDS. Great, just what I need...more weird CFIDS symptoms...

The doctor ordered blood tests to look at my EBV and HHV6 levels, as well as my glutathione and cyclic-AMP (ATP) levels. We're not going to worry about my triglyceride levels for now because my cholesterol is fine. We'll test the triglycerides another time when I am able to go in for the test after fasting.

I'm also excited that my doctor approved a new treatment protocol researched by Rich Van Konynenburg, Ph.D. that I was hoping to try. You can see a full description of the treatment plan here and background information here.

Now I'm in a wait-and-see mode. I'm waiting on various blood test results and waiting on the supplements I've ordered for my new treatment plan. I'll be going out of town for a little while, so I'll have to wait to start the new treatment plan until I get back from my trip.

Continuation of the Now What's

I went to see my GI doctor (who is awesome, by the way) on Monday to discuss why my iron level went down (and possibly understand why my hair is falling out). See Now What?! (Part I) and Now What, Part I...Continued for background.

Apparently, I don't need to be concerned about my iron levels anymore. According to my GI doctor, the big difference in my iron level results (50 vs 30) is due to two different laboratory companies processing my blood. These two companies use slightly different processing methods and have slightly different calibrations for interpreting iron levels. This means, we can't compare these two test results. I really don't understand why two different labs should have different techniques or scales. Shouldn't things like this be standardized?

My GI doctor ordered another blood test through the lab that resulted in my iron level of 50 so that we could compare my results more accurately. We're also going to check my vitamin D level (which has also been deficient for some time). I should get my results back later this week or early next week.

As long as my iron levels don't reach the low of 17, my doctor is not worried. She said I could start taking my iron supplements just two or three times a week to "maintain" my iron level. I suppose the old goal of getting my number up to 70 has been thrown out the window. Just as well. The iron supplements were causing major constipation and keeping my hemorrhoids from healing properly.

Of course, we still don't know why my hair is falling out.

After ascertaining that I am no longer anemic, I asked my GI doctor if there were any other "random" blood tests we could do to find out if there was some other sort of deficiency that could possibly be causing my hair loss (which has been going on for a little more than two weeks) or even why I'm so fatigued all the time (I have fantasies that one day we'll discover that I really don't have CFIDS but that it's just a missing vitamin that is making me sick...a girl can dream, right?).

She said there was a comprehensive blood test that a particular company did that her husband (also a doctor) has used before, but she wasn't sure if my insurance would cover it. This company tests the blood for nearly every essential vitamin and mineral that our bodies need.

I called the company, and it turns out that my insurance doesn't cover this test because it is not considered medically necessary; however, I have decided to go forward with the test anyway. I think it is medically necessary. Fortunately, the out-of-pocket expense is less than $275...which is still a chunk of money but is doable...and worth it to me.

I had two large vials of blood drawn this morning to be shipped to the lab that will process my blood. I have no idea how long it will take to get back the results, but I'll be sure to write about them.

This afternoon I also have an appointment with my regular doctor. See Now What?! (Part II) and Now What?! (Part III) for background info. I've got a list of things I need to discuss with her. Since I'm thinking about it, I might as well list things out (this is more for me than anything else):

• Hair loss
• Hearing/comprehension difficulties
• Triglyceride levels
• blood work for glutathione levels and cyclic-AMP (ATP) levels
• Possible new treatment protocol
• Glutathione IV
• ATP pills
• Glyceron Plus injections

I feel like I'm leaving something out, but this will have to do for now. Stay tuned.