An Astounding One Month

I started this blog one month ago on May 28, 2009.

After giving personal testimony at the CDC in Atlanta, Georgia in April and at the CFS Advisory Committee at the Department of Health and Human Services in Washington, DC in May, I had the desire to start a blog to share my life -- the good, the bad, and the ugly -- so that more people could better understand CFIDS and living with chronic illness, in general. My main hope was that my family and friends would read my blog.

Never in my wildest dreams did I expect that in one month there would be over 1,000 hits to my blog from the all over the United States and the world, including Canada, Australia, Europe, and Asia. (Now I'm just waiting for South America, Africa, and Antarctica so that all seven continents are covered!)

I also did not anticipate that I would write as frequently as I do; however, the comments posted on my blog from others have inspired me to keep writing. This blog has given me a vehicle to reach more people than I ever imagined, and I'm going to keep writing as long as one person keeps reading.

Fighting for CFIDS awareness has given me a sense of empowerment. Blogging, writing to members of the government and media, going to Capitol Hill to lobby, and giving public testimony help me feel that my being sick all the time is not without meaning. I have a purpose and want to speak up especially for those with the disease who are too weak or ill to speak.

I am trying to make a difference.

Please feel free to share my blog with others. Thank you for reading!

ME/CFS Video by Nate

Nate visited my blog a few days ago. Also 30 years old, he is a fellow advocate and patient from Vancouver, Canada. He created this video.

Time Sensitive: CFIDS Advocacy

The CFIDS Association of America just sent out the following action alert. Please take action if you are able.

We need your help TODAY
ACT NOW ON CDC RESEARCH PLAN

Take Action!
Tell planners that the status quo isn't good enough

For nearly two years, the CFIDS Association of America has been working to effect a more robust research effort at CDC. In spite of these diligent ongoing efforts, the past two years of dialogue and public testimony has produced a 5-year draft plan from CDC that is substantially the same as what CDC has been reporting since 2006. Status quo. Groundhog day. Déjà vu. All over again.

In response to CDC's request for input on its draft plan (posted at http://www.cdc.gov/cfs/meetings/2009_04.htm), the CFIDS Association has prepared a detailed response, making both criticisms and recommendations for how one-half of the nation's investment in CFS research will be spent through 2013. Our letter is posted at http://www.cfids.org/temp/research-plan-response.pdf for your review. We have used many of CDC's public reports to document the lack of progress and failure of the program's leadership to meaningfully advance practice and prevention to improve patients' lives.

To shift the dialogue and demonstrate a more united front of the research, clinical and patient support communities against the status quo, we invite you to "endorse" our letter by sending your own message of support to CDC at CFSResearchPlan@cdc.gov or by responding to this Action Alert!

The deadline for comments is Tuesday, June 30. CDC has committed to keep its e-mail address functioning after this date, so even if you can't act before June 30, please do so as soon as possible. Share this message with friends and family and ask them to do the same.

$20 million spent over the next five years is hardly sufficient to address the public health challenges that CFS presents, but it's too much money to waste on a weak, ineffective CDC research plan.

K. Kimberly McCleary
President & CEO

Take Action! It's easy to do and takes less than a minute. You can make a difference!

Things are Looking Up

I've been sicker than usual for about a week. Last night I went to bed around 8pm and didn't get up this morning until 8am. The best news is that I'm physically starting to feel loads better. Hooray!

I'm pretty sure I'm still running a low-grade fever, but everything else is feeling pretty good. My lymph nodes are barely bothering me at all. Yeah!

This is all excellent timing because my mom will be coming over to our place for a weekend visit. She lives in another state, and hasn't been to visit for at least a couple of years (we usually fly out to see my parents at their place).

I've been looking forward to my mom's visit ever since she made plans to come. It's even given me a great excuse to purchase a few things for our home that I've been putting off for some time. :)

I have to get back to work now, but I'll write again later.

Back at Work but Still Under the Weather

This is my second day back at work this week, and I'm on my lunch break. My body is still working very hard to fight off whatever it is I've had for the past several days. I feel yucky and achy, and I really don't feel like interacting with humans because of the amount of energy it takes. Though, oddly, I'm in a pretty good mood.

I'm definitely a bit better than earlier this week, but the lymph nodes in my neck are really bothering me. I'm pretty sure I'm running a fever. At least my throat doesn't hurt like it did before.

Why am I at work, you ask? Well, I can't afford to use any more sick leave unless absolutely necessary. Thank goodness my workday today mostly involves paperwork at my desk, so there's not too much movement or interaction that I have to do.

What I'd really like to do right now is crawl under my desk and take a nap, but I think people might notice. I just wish I had my awesome, new Disneyland throw blanket. It's really comfy.

Just for fun:
If you think kittens can be cute or funny, check out this link.

The Cost of Chronic Illness

Even with good insurance, chronic illness is expensive.

My husband and I spend more than $5,000 per year on healthcare expenses (including what we pay for health insurance) just for the two of us. You can bet your bottom dollar that most of those expenses are for my healthcare.

I pay $99 per month ($1,188 annually) for my job sponsored health insurance (my company pays an additional and hefty $431 per month -$5,172 annually - on my behalf). My husband pays $77 per month ($924 annually) for his job sponsored health insurance (his company pays an additional $225 a month - $2,700 annually - on his behalf). The difference in cost between our plans is because my husband has a more economical plan since he is in good health and rarely needs to see a doctor.

The cost of my medications and treatments is truly unfortunate. I've never actually calculated how much everything is per year, but I would guess they easily cost over $2,000 annually (and I wouldn't be surprised if it was actually closer to $3,000). My husband's medications, on the other hand, come out to less than $300 per year. Every appointment with my regular doctor or a general practitioner is $25 and every appointment with a specialist is $35. Considering how often I visit "the doctor," $25 and $35 per visit adds up pretty quickly. I'm lucky that my insurance plan covers the cost of bloodwork and other diagnostic tests, often at no cost to me. My husband rarely goes to the doctor.

If our companies did not offer such good health insurance plans, we would really be in trouble. You don't even want to know how much all this would cost without insurance or if we were under insured.

But just for fun, let's guess.

Without insurance (or without a prescription plan), here are a few examples of how much a few of my prescriptions would cost:

Advair (three month supply): $571.65
Yaz (three month supply): $179.65
Generic Zoloft (three month supply): $92.88
Albuterol Inhaler (three month supply): $88.63
Generic Flonase (three month supply): $81.78

These medications already add up to more than $1,000, and we're not even looking at a complete list of everything I take.

Each of my visits to the doctor would easily cost $100 or more, and all the countless bloodtests I get would cost even more. Labwork is very expensive. Without insurance I would definitely not be able to afford the immunotherapy (allergy shots) I'm currently undergoing to help improve my quality of life. The cost of major tests or invasive procedures is even more frightening. My MRI cost me $35 with insurance, though my insurance company was billed over $2,500. My colonoscopy cost $35 with insurance; my insurance company was billed over $5,000.

Here's a real shocker. I just added up all the claims to my insurance company over the past 12 months (June 2008 to June 2009), and the total is $17,741.47!!!!! I wouldn't believe it if I didn't have my insurance information right in front of me. This number doesn't even include my husband's expenses, though his would not make as big an impact. It also doesn't include my prescription expenses.

I can't even imagine living with chronic illness and having no insurance or being under insured. I haven't even taken into account the cost of dental or eye care in this post. I really can't imagine living with chronic illness in a country with poor access to proper medical care. It would be a difficult way to live.

The US healthcare system needs to change. Unfortunately, I'm not sure how. I only know that I am not any more deserving of good healthcare and a decent quality of life than an hourly worker or an elderly person on a fixed income simply because I can afford it more easily. I am not taking sides or playing politics, I'm just pointing out a flaw in the system.

Now What, Part I...Continued

I'm still home sick, but I thought I'd write. I'm feeling much better than Sunday and Monday but still not strong enough to go to work today. I hope to go back tomorrow because I really can't afford to use any more sick leave.

I got back my iron and thyroid blood test results. (See Now What?! (Part I) for background.) My thyroid is fine, but my iron levels are lower than the last time they were checked. Lower?! I've been taking high-dose prescription iron supplements (equivalent to 589% Daily Value) every day for the past several months. The only two occasions I did not take my iron was when the doctor instructed me to stop for a week before getting my blood tested.

Here's some perspective. My GI doctor said she prefers the iron level of women my age to be at about 70. When I was first diagnosed with iron deficiency earlier this year, my iron level was 17. After about two months of taking iron supplements, my iron level jumped to 50. After a couple more months of taking iron supplements, my iron level has dropped to 30. This does not make any sense to me, particularly because I have not taken any new medications, altered my diet, or had any changes in health or lifestyle; I am also not pregnant.

And I'm still losing my hair. Argh!

My GI doctor told me (via the nurse who called me this morning) that she wants me to see my regular doctor about my hair loss. I still think it's my low iron level that's causing the hair loss (Ockham's razor). Good thing I already have an appointment scheduled with my regular doc for July 1 (a week from tomorrow). Sadly, the list of things I need to talk about with her is steadily growing.

I have to say that I am very surprised and disappointed by my lower iron levels. I'm waiting on a callback from my GI doctor's nurse to tell me what she wants to do about my iron levels. I don't know if I'm going to have to see a hematologist, if she herself is going to do more tests, or if she wants to try other methods of iron supplements (injection, IV, etc.).

Stay tuned...

Update at 5:44 PM: My GI doctor's nurse called to let me know that the doctor wants to see me for a follow up. I've got an appointment for Monday.

I'm Angry

So I don't normally write more than one post in a day. I also don't write when I'm feeling sick, but this time I needed to write so that I could clear my mind and go to sleep.

I'm angry.

I went to the walk-in clinic today (see previous post) to try to get a throat culture, as my current symptoms are what I experience when I have a bacterial throat infection. I'm still running a low-grade fever and it feels like a knife is stabbing my throat when I swallow.

I chose this particular clinic because the online description said that it was equipped to diagnose for strep throat. Unfortunately, this claim is not entirely true. They are able to conduct the rapid strep test -- but not the true throat culture.

Of course, I didn't learn this little fact until after I had been checked in and paid my fee.

What's the difference? Well, thanks to my funky immune system, my body does not react to infections like most (read: textbook) cases.

When I have a bacterial throat infection, I do not run a high fever. In fact, there are times when my body temperature has remained normal despite confirmation of infection. My throat also does not always get white spots or streaks that are characteristic of bacterial infections, especially since getting my tonsillectomy (and, yes, you can still get strep throat after you've had a tonsillectomy). Additionally, my rapid strep test results have ALWAYS come back negative (that is, the test detected no trace of strep) even when it was later confirmed by throat culture that I did indeed have a bacterial infection.

That's why I need the full-blown throat culture when I have a very painful sore throat...just in case.

Now back to the point of my post of why I'm so angry. Here's why:

• The lack of the throat culture made me feel duped; the clinic's website was misleading.
• The healthcare worker I saw was not a doctor, and there was no doctor in sight. She was the only healthcare worker on call at the "clinic" (if you can really call it that).
• When taking my health history, the healthcare worker did not understand that CFS can affect the immune system. As far as I could tell, she didn't really even know what CFS was other than something that makes people tired.
• The healthcare worker did not believe me when I explained that my strep symptoms tend to be atypical. She merely told me that most sore throats in adults are caused by viruses. Well, duh.
• When the healthcare worker looked at my throat she said that she could see nothing wrong and told me: "My throat is redder than your throat." Seriously?! This person is telling me that her throat is redder than my throat?! Is that supposed to make my throat suddenly feel better? (My throat is red, for the record, but we didn't bother doing the rapid strep test.)

It's the last point that was the spoiled icing on the awful-tasting cake. I paid money to hear about my not-a-real-doctor healthcare worker's throat and to feel belittled. I'm angry because this entire farce was a complete waste of my time and energy, and my time and energy are precious. I'm angry because the healthcare worker didn't believe me. I'm angry because it shouldn't be this difficult to find a doctor to get a throat culture. I'm angry at the state of our healthcare system. I'm also angry because I'm still sick and am no closer to a diagnosis. (This last sentence can be taken on a number of levels.)

This experience reminded me how far we still need to go to educate everyone in the healthcare field...but that's too big a topic to address here.

I still have a fever; my throat still hurts; my body is still achy. But I'm a little less upset now that I've had the chance to vent.

It's time for bed.

Sick at Home

It's official. I'm sick.

I suppose one could argue that I'm always sick, but today it's acute. Last night I developed a mild fever and terrible headache along with my sore throat.

It really hurts to swallow, and my entire body is achy. Moving takes a lot of effort. I don't have a stuffy nose or any other cold-like symptoms, so I need to get a throat culture for strep. I am prone to strep infections.

I tried to get an appointment with my regular doctor this morning, but she's out sick. Unfortunate coincidence. I then called my allergy and asthma doctor to see if her office did throat cultures. Nope.

I am now trying to find a near-by walk-in clinic that does throat cultures. That's why I'm online. If I didn't have to look for a clinic, I would not have dragged myself upstairs to the computer.

Found a clinic. It's one of those new walk-in clinics attached to a major store (e.g., CVS, HEB, Walgreens, etc.). Here I go!

Unpredictable Energy Levels

My energy levels have been all over the place this week.

For most of this week I've felt like I was dragging myself through each day. I was particularly exhausted on Wednesday; I went to bed around 7:30pm and slept through the night.

Friday evening was awful. I felt like a ton of bricks had been dropped on me and was running a fever. My whole body ached and even getting up to brush my teeth felt like running a marathon. I was worried that my fever and malaise were the beginning of a dreadful weekend. That night I slept over 14 hours (went to bed around 10pm and woke up after noon on Saturday).

I was a bit surprised when I woke up on Saturday afternoon not feeling too bad. My fever had gone, and I was no longer achy. Saturday started off like any other Saturday for me, but then turned into a bizarre (in a good way) energy-filled afternoon. I felt good enough to do six loads of laundry and even had enough energy left over to organize a couple of shelves in our laundry closet. What was funny about Saturday is that I had enough physical energy to clean, but I had no mental energy to get on the computer or talk to anyone.

My husband Kenny couldn't believe his eyes. He also kept warning me to slow down because when I've done things like this before I've regretted it. I went to bed around 10pm and woke up a little after noon on Sunday (today).

Today I am paying for yesterday's unexpected burst of energy, though not as dearly as I had expected. My lymph nodes are sore; I have a headache; I feel achy; and I am somewhere between tired and exhausted. I definitely could not do six loads of laundry today.

Because I've had CFIDS for my entire adult life, I have had to adjust to my constant state of fatigue. In my world, I measure my energy levels on a scale from "Tired" (feeling pretty good) to "Exhausted" (feeling not as good) to "Completely Incapacitated" (can't even go to the bathroom without help). Anything better than "tired" is extraordinarily unusual. Yesterday was a gift. Most people who know me might be surprised to read this part because I am very good at appearing awake and keeping a happy face, even if I'm not feeling that way.

I think I need a nap now.

By the way, Happy Father's Day!

Update at 5:47 PM: Not long after I wrote the above blog post, I crashed. I started feeling pretty awful. I took a nap, but it didn't help much. My throat is hurting now, and I feel even more achy. And my life with CFIDS continues...

Happy 4th Anniversary to Us

Today is Kenny's and my 4th Anniversary. We celebrated it a little early by going to Disneyland last month (see Disney on Wheels).

I don't think I'm going too far out on a limb by saying we've been through more than most couples our age. Since we started dating six years ago, Kenny has brought me to the Emergency Room twice (complications from surgery; anaphylaxis reaction to allergy shots), the hospital for a few out patient procedures (tonsillectomy, colonoscopy, MRI, etc.), and to too many other medical appointments to count. He even came with me to the CDC in April to give public testimony about CFIDS. I could go on and on about him, but I'd rather spend the evening with him (rather than write a long blog post)...

My husband is a constant source of love and support. I love him with all my heart!

Now What?! (Part III)

A little while back, the place I work had a wellness day and gave everyone free cholesterol, triglyceride, and blood sugar tests. I have perfect LDL, HDL, and total cholesterol levels, and my blood sugar level is perfect, too. It's really nice to have something right with my body.

My problem is with my triglycerides level. It's high.

Though I had my tests done in the morning without having had breakfast, it is possible that the food I ate the previous day was still floating around in my system and affected the results. The results could also have been high because of my general lack of physical activity (I think this is the most plausible reason). Or it was all just a fluke.

My next course of action is to get my triglyceride levels re-tested because all this excitement could be for nothing. I've got an appointment with my internal medicine doctor scheduled for early July. When I know what's going on, I'll write about it in a post.

Now What?! (Part II)

Lately I've been having more trouble than usual understanding what people are saying. I am not entirely sure if I am actually having difficulties hearing what they are saying...or if I am simply (or not so simply) having issues processing what they are saying. I suspect it's the latter.

Either way, it's a problem.

When I watch TV or movies at home, I either have to turn the volume up high or use closed captioning to be able to follow what everyone is saying. The ironic thing is that I am sensitive to sound, so turning the volume up is usually uncomfortable. Most of the time I prefer closed captioning.

When I am having a conversation with someone, I sometimes find myself staring intently at the person's mouth when he or she is speaking to help with my comprehension. If I'm not looking at people when they are talking, I often don't understand what they have said. More and more I have found myself asking people to repeat things at least two or three times before I know what they are talking about.

People I talk to are starting to notice. It's getting frustrating.

My difficulty processing auditory input is not a new phenomenon; however, it has become more pronounced as of late. I've scheduled an appointment with my internal medicine doctor for early July, but I think I'm thinking about going straight to an audiologist (my insurance allows me to go directly to specialists). I'll have to call tomorrow to see if I can schedule an appointment.

I'm hoping my problem is as simple as having too much earwax! When I know what's going on, I'll write about it in a future post.

Update on June 16, 2009 at 9:57 AM: I made a call first thing this morning and was able to get an appointment with an audiologist for this afternoon. Here's hoping for earwax!

Update on June 16, 2009 at 6:01 PM: I had my hearing exam this afternoon. The good news is that there are no problems with my hearing and I don't have any earwax buildup. The bad news is that I still have to try to figure out why I'm having so much trouble understanding people lately.

My next step is to schedule an appointment with an ENT to see if he/she can find anything physically wrong. I think I'm going to wait until my July appointment with my internal medicine doc to see if she has any suggestions for ENT's. I'm actually hoping that this problem goes away as mysteriously as it started.

Now What?! (Part I)

My hair is falling out. It is falling out evenly, so my appearance is not any different. However, after losing about 25% of my hair volume, I finally knew something was wrong. That's when I called my doctor.

My hair has actually been falling out quite rapidly for about the past week, though it took a few days before I was certain it was happening. (Since I have long hair, it is usual to see my hair all over our house.) More hair than usual seemed to be coming out when I brushed it, showered, slept, or moved.

I'm going in for blood tests on Wednesday.

I think my hair loss is because of my recent development of iron deficiency, but we're also going to test my thyroid levels.

I suppose I'm not more alarmed about my hair loss because I've experienced hair loss before due to a medication I took. As soon as my doctor at the time and I figured out I was reacting to a particular medication, I stopped taking it and my hair stopped falling out. As soon as my GI doctor and I figure out the cause of my hair loss this time, I am confident I will be able to take appropriate measures to stop the problem...I hope.

When I know what's going on, I'll talk about it in a future post.

Update on June 17, 2009 at 1:46 pm: Just got my blood drawn to test iron and thyroid levels.

Update on June 23, 2009: See new post Now What, Part I...Continued.

A Case of the Blah's

I usually do a good job keeping my spirits up, but today I had a bad case of the "blah's." Every few months or so I have a pity party and feel sorry for myself. It's hard being sick all the time, and sometimes it just gets to me.

A good cry usually helps.

I occasionally cry when I just feel really ill. (I'm sick of being sick and tired of being tired is a favorite line of mine. Then there's always, I'm sick and tired of being sick and tired.) Other times I cry because of all that I have lost or missed out on (e.g. health, opportunities, time with family or friends, living life). Sometimes I cry out of frustration or because being sick is "not fair" to me or my husband. Mostly I cry because of some combination of the above reasons.

Today I cried about my marriage.

My husband Kenny is a wonderful person and loves me very much, but I know that my illness puts a strain our marriage. The physical aspect of our marriage is certainly affected. Kenny also does more than his share of the cooking, cleaning, and grocery shopping. He is even my nurse when I'm not feeling well. To make up for my lack of physical assistance in doing housework, I am in charge of all our financial paperwork like paying the bills, balancing the checkbook, planning for our retirement, and filing our taxes.

Still, my illness is not fair to my husband.

I am aware of the statistic that most marriages involving someone with chronic illness end in divorce. I've even met some of these people. Every once in a while, the fear that Kenny will leave me because I am too much of a burden pops into my head. I know I am not being entirely rational because we actually have a very strong, supportive marriage, but I suppose fear is not always rational.

I think what gives our marriage an edge is because my husband and I met when I was at my sickest, so I am doing really well compared to six years ago. Acting on suggestions from other people with CFIDS, we've also made some life adjustments to make our lives a little easier (most notably, we've invested in a twice-a-month housecleaning service). Another important life choice is that Kenny has a couple of hobbies that are all his own: working out at the gym and photographing nature (including snakes and alligators!).

Kenny held me while I cried and spoke comforting words. I'm feeling much better now.

What's in a name?

What's in a name? that which we call a rose
By any other name would smell as sweet
William Shakespeare

What's in a name? that which we call CFS
By any other name would feel as awful
Me

Here are a few names for my disease:

Chronic Fatigue Syndrome (CFS)
Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS)
Myalgic Encephalomyelitis (ME)
Post-Viral Fatigue Syndrome
Chronic Epstein-Barr Virus Syndrome
Low Natural Killer Cell Syndrome

You can see even more names and historical background here.

Why do I personally call my disease Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS)? It's just what I've gotten used to. Sometimes I use the more "official" term Chronic Fatigue Syndrome (CFS) as well, though I'm not really a huge fan of the term.

To tell you the truth, scientists could call the disease "cat poop" and I wouldn't really care as long as they were doing real research and making progress in finding a cause, treatments and a cure for it...especially a cure. OK, maybe I would care if they called it "cat poop," but I think you get my point. To me the name should not be the main issue. No matter what it's called, I'll still have the same symptoms.

Unfortunately, it seems that the name is an issue.

To many people CFS doesn't sound as serious as "influenza" or "eczema," and it apparently doesn't sound as serious as "swine flu" either (don't get me started on swine flu...). Much of the public, media, researchers, and healthcare workers just don't seem to take this disease seriously because the name Chronic Fatigue Syndrome sounds so benign. The name makes it appear that people with this disease are just tired, and it ignores all the other wacky and unfortunate things going on with our bodies.

Do I wish this disease were known by another name other than CFS? Yes. Am I passionate about changing its name? No. Do I support those who want to change its name. Yes. Do I have a preference for what it should be called instead? No. Why am I writing about the name issue? Because it was on my mind. Should I keep asking myself questions and then answering them in italics? I think not.

Why I Don't Call or Write

I spend very little time on the phone or on email. I rarely answer my phone and instead let voice mail or the answering machine get it. I never call friends just to chat. I read all my personal emails but rarely respond to them, and I even more rarely initiate email conversations. My lack of accessibility has most certainly alienated my friends and made my family feel neglected or ignored.

The reality is that I just don't have the mental (and sometimes, physical) energy.

I have found that mental energy is just as important as physical energy when having a dialogue. Phone conversations force me to listen to, process, and respond to what the other person is saying. Email correspondence requires me to read, process, and respond to what the other person is saying. I do so much of these mental aerobics at work that by the time I get home I just don't have anything left to give. Unfortunately, I'm not much better communicating with people on the weekends because I usually spend most of that time trying to recover from the week (i.e., sleeping).

It's not personal. It's CFIDS.

Other People's Blogs

My brain fog is acting up today (I'm having trouble concentrating) and I'm feeling a bit nauseated, so this entry will be shorter than usual.

I'm very new to the blog world, so I need a little help. I am interested in creating a list of bloggers with CFIDS/CFS/ME (or who blog about it even if they don't have it) and including links to their blogs on my site.

If you know of any such bloggers (or you yourself blog about CFIDS/CFS/ME) please respond to this post and include the blog address(es). Thanks!

Note added on Monday, June 15, 2009: I also want to add links to interesting or useful websites for people with CFIDS/CFS/ME, so please post those links, too. Thank you!

Being Social and Having Hope

It turns out this weekend was pretty much a lost weekend (as usual). I've slept more hours than I've been awake. On the upside, on Saturday I managed to accompany my husband Kenny to a backyard barbecue one of his colleagues from work hosted. Because I knew the event was important to him (and because I often miss out on social occasions due to my constant exhaustion), I slept in late and took a three-hour nap up until we had to leave the house. This way I would have enough energy to attend. We got to the barbecue late and left early, but the important point is that we made it. I made it.

Social gatherings are exhausting for me, especially when there are a lot of new people to meet. It is mentally and physically taxing to remember new names and faces, shake lots of hands, and have intelligent conversations. If there are a lot of people in an enclosed space, noise can become overwhelming (my disease has caused me to become sensitive to light and sound). My brain has trouble filtering out extraneous sounds, so I regularly have trouble participating in conversations when there is a lot going on in terms of noise. Background music is truly painful. Fortunately, the gathering yesterday was outside and there was no music playing, so the noise level was quite tolerable.

I am not shy, nor do I fear crowds. (In fact, I even enjoy public-speaking.) From childhood through college I always had great friends. Unfortunately, my disease has forced me to become hermit-like. What little energy I have is reserved for the workweek, so weekends are spent recuperating at home. I have very few friends outside work, and what friends I do have are really more like friendly acquaintances. My husband is my best friend (thank goodness for him). I would love to have more active friendships, but I just don't have the energy. I don't even have the energy to socialize with my own family.

This disease has taken away so much and given me so little. At first I had a very difficult time adjusting to my new way of life. I even went through a period of mourning for all that I had lost. It was almost as if someone had died, and I was going through the stages of grief...all the way up to acceptance and hope.

Now I live a happy life. To be clear, I am not happy that I have my disease by any means (and I still miss being able to do many things), but I now have a sense of hope for the future and I do what I can to make the most out of life. Though it exhausts me beyond belief, I love my job and enjoy what I do. My husband and I go on a trip at least once a year (even if it's just a weekend), and we always try to buy Christmas and birthday presents for our younger relatives. We watch lots of TV and movies (thanks, Netflix!), and we regularly donate money (and sometimes things) to various charities. We also laugh a lot.

The greatest thing this disease has given me is an increased sense of compassion for others. It has also gotten me involved in advocacy, and the advocacy fuels my hope. I am looking forward to a bright future.

An Off Day

Today is what I call an "off day." It's my lunch break, and I feel terrible. My head hurts, the lymph nodes in my neck are hurting, my body feels achy, and all I want to do right now is sleep. Walking from my desk to the copy machine feels like running a marathon, and having conversations with my colleagues is exhausting. My brain is processing things exceptionally slowly, and I'm having trouble concentrating. I'm trying to get a report done for Monday, but I'm not making much progress. The funny thing is that I'm still in a good mood.

While I never really feel that great physically, it's days like this that remind me how bad my CFIDS can get. It's my body's way of telling me to slow down. Today is certainly not the worst day I've had (on those days I can't even come in to work, and when my CFIDS was at its worst I couldn't work at all), but it's definitely not one of the best. I'm hoping today is just an off day and that I'll feel better tomorrow. When I feel like this I never know if it's a one-day thing or if I'll be out of commission for a while. I suppose only time will tell.

Thank You

Today my blog is officially one week old. I just wanted to take a moment to thank you for reading my blog, especially if you have already become a regular reader. I also want to give an extra special thank you to those who have posted comments and shared personal stories. You have moved and inspired me. Thank you!

The Need for Research, You Can Make a Difference

In reading through the CDC and NIH websites on CFS research, I realized that they're seriously out of date and not especially inspiring. This lack of attention and updates to the websites demonstrates to me that CFS is not a priority to the CDC and NIH. (The Swine Flu websites are updated almost daily.)

The NIH's website on NIH Funded CFS Research has a pathetic few number of research abstracts. The latest research listed is from 2006. The latest date reference on the other link addressing CFS Research is 2003. The latest "accomplishment" by the Trans-NIH Working Group for Research on Chronic Fatigue Syndrome (CFSWG) listed on the NIH's website is from 2004. The CDC's CFS website is only marginally better. The Research: New Knowledge & Publications website was last updated February 28, 2008.

We're halfway through 2009, right?!

There is a serious need for more research and focus on CFS. Agree? You can help make a difference! Here are a few things you can do to advocate for more research and awareness:

Activities That Require Less Energy and Money

Use the CFIDS Association's Grassroots Action Center write to the media, public officials, and (currently) the CDC about CFS. The more we write to these people about CFS, the more those people will be forced to pay attention. Don't just send emails/letters this one time. Make it a habit. I send emails/letters through the system regularly. If you don't have the energy to write you own thoughts on the subject, don't worry! The main part of the letter is already written for you. Sending emails through the system is free. Sending a letter only costs you a postage stamp.

Donate money to the CFIDS Association (even if it's just a little). No, I do not work for them, but I do donate money to them every month. I'm part of the Chairman's Circle. The reason I donate is because they are one of the biggest advocates for people CFS. Their advocacy is unparalleled, and their voice is so big that they get heard. They also sponsor CFS research. The CFIDS Association is the reason I got involved in advocacy.

Write. Start a blog for all to see. Share your story. The blog system I am using to write this one is free through Blogger.com. I've sent my blog to family and friends. Some of them have forwarded my blog to their friends and family. The more people that learn about CFS and start to better understand the disease, the better.

Activities That Require the More Energy & Money

When the CFIDS Association holds its next Lobby Day, try to participate if you are physically and financially able. If you can't be there in person, be sure to take advantage of the virtual Lobby Day that takes place every year. My first Lobby Day in 2006 was one of the most empowering things I'd ever done. My second one in 2007 was no less empowering.

The next time the CFS Advisory Committee meets, tell your personal story if given the chance. This year I went in person to speak, but they also accepted testimony via telephone.

Education is Key

When I first started getting sick in my early 20's, I disregarded the symptoms. I thought I was just feeling "under the weather," so I did what any normal, healthy twentysomething would do under those conditions...

I ate a healthy diet, took vitamins, and exercised.

The more I exercised, the worse I felt. Unfortunately, conventional wisdom told me to "push through" and eventually I should start feeling better. I kept pushing myself physically for about two years (ages 22-24) until I was too sick and too exhausted to work anymore. And then even when I was sicker and more exhausted, sleeping 16 to 20 hours a day (ages 24 and 25) and running low-grade fevers all the time, I continued to follow this "healthy" way of life during the few hours I was awake each day. (I should probably mention that the kind of exercise I did involved full-contact martial arts and working out at the gym.)

I did not understand that I was making myself worse.

It was finally after I got diagnosed that I stopped exercising almost entirely...not because I don't like to exercise (up until my illness I had been active all my life), but because my new doctor helped me come to the realization that my body could not keep up with my physical activity. I was, in fact, depleting what little energy my body could create. I miss exercising very much, but whenever I've tried anything (even light exercise), it has been too much for my body to handle. For now I have decided that going up and down the stairs at home and at work and getting through the day is exercise enough. Once I'm healthy again, I'll continue working toward my black belt.

Because of my own lack of awareness of CFIDS and because of the general lack of awareness in the medical community, I believe it took me longer to get diagnosed than it should have. I went from doctor to doctor telling them that "something" was wrong, but I that didn't know what. I told them all my symptoms (which, if you look at the blog post on my symptoms, should have at least pointed them in the direction of CFS after they ruled out other diseases) and gave them my complete medical history, including my family medical history.

One doctor told me that my problem was all allergies and pretty much dismissed me. (By the way, that doctor also worked for the NIH...) The next one told me that I looked healthy and that I was probably going out and partying too much. (Seriously? Last I checked, sleeping all the time was not a party.) Another doctor told me that CFS wasn't a real disease and tried to convince me that I was just depressed. (In a rare moment of rudeness, I asked him if depression caused fevers...because I was constantly running a low-grade fever. He didn't really have much of a response.) These doctor visits were not that long ago. In fact, all of them were between 2001 to 2005.

My story of going to multiple doctors is not unique. It is because of my own experiences and other patients' experiences that I have come to realize education is key.

Medical professionals and the public alike need to be educated about this disease. If CFS became a mainstream healthcare concern (Swine Flu, anyone?), then the general public and healthcare workers would be able to better understand the disease and the people who have it. Better yet, patients wouldn't go undiagnosed for as long. We would not have to feel afraid of being misunderstood. Doctors would stop treating us as if we were imagining things or psychologically disturbed. Schools, employers, and the government would take us more seriously and grant us the accommodations we need. More friends and family would better understand and support us.

Life would be so much better for so many people.

This is why I've decided to speak up more and share my story. I want to make a difference.

Disney on Wheels

My husband Kenny and I went to Disneyland (and Disney's California Adventure) over Memorial Day weekend (about a week and a half ago) to celebrate our fourth wedding anniversary a month early. It was both our first times to visit this particular Disney park. We bought two-day passes for our weekend.

We also rented a wheelchair for me.

When I was a little girl, I visited Disney World with my parents and older brother. We got to the park early so that we could spend as much time as possible at the park. My brother and I ran from ride to ride so that we could minimize the time traveling between rides and maximize the number of rides we could go on.

This time my Disney experience was more subdued and less energetic. Both days we got to the park in the afternoon and left around 7pm on Saturday and 8pm on Sunday. We took our time getting from ride to ride and when we stopped to eat. We didn't get to go on all the rides we had planned, and we left each night when I was too exhausted to go on...not because we were ready to leave.

The wheelchair is the only reason I was able to stay as long as we did on both days. It allowed me to conserve valuable energy that would have been consumed if I had walked between rides and stood in lines for long periods of time. Even so, it was frustrating and humbling spending my weekend at Disney in a wheelchair because it was a physical representation of my disease for all to see.

People's reactions to wheelchairs was interesting to experience firsthand. Some people, children and adults alike, openly stared at me. A few people went the extra mile to be kind, holding doors and stepping aside so that Kenny and I could go in front of them. Others behaved as if I did not exist and merely stepped around me or, in some cases, over the footrests to get by. Those were the people that upset my husband. At one point, Kenny exclaimed in frustration to me: "They're acting like you're not even there!" (Life lesson: The next time you see someone in a wheelchair, please go the extra mile to be kind.)

I must say that I am very impressed with the way Disney has made its park wheelchair accessible for the most part. Though I was in a wheelchair all day both days, I was still able to go on the rides of my choice (even the roller coasters - which are fun, by the way). The park staff did a great job directing Kenny and me when there were alternate entrances or procedures for getting on a ride. My only criticism is that there were not many doors that could open automatically, so it was awkward trying to go through.

Overall, my time at Disneyland was enjoyable. Five years ago, I would not have been able to consider a trip like this at all, so I appreciate what my improved health allows me to do. Still, I look forward to the day that I am completely healthy and can do all the things I want to do when I want to do it. Until then, it's Disney on wheels for me.