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.