Saturday, September 26, 2009

My CFS/CFSAC Video Testimony

At the end of October, the CFS Advisory Committee will once again meet to provide advice and recommendations to the Secretary of Health (via the Assistant Secretary of Health and the U.S. Department of Health and Human Services) on what directions to take in terms of CFS research and strategic planning. 

It has long frustrated me that those who are the most severely afflicted with ME/CFS often go unheard. We are not represented at these meetings because we are too sick to attend them.  In hoping to tell my story and perhaps be a voice for the voiceless, I decided I would attempt to create a video testimony (with assistance) which could hopefully be presented along with the other in-person testimonies. I officially submitted the video a couple weeks ago, and am currently awaiting a response.

In the meantime, I've included a link to the video below.  A non-profit group called PANDORA (Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy) has also already featured the testimony on their youtube website.

Since I am unable to speak above a whisper, my sister-in-law graciously agreed to do the voice over for me, so it is her voice that you hear in the video. I am extremely grateful to her for all her help!

Thanks for watching and for hearing my story.

Friday, September 18, 2009

A Visual Interpretation of my Poem

I received an email earlier this week that really touched me. A woman named Michelle wrote to say that she was moved by the poem I had posted on my blog (called Waiting from Within). She had taken the poem and set it to images and music, and wanted to share it with me and get my approval to post on youtube. I was floored! I never would have dreamed someone would be moved enough to use my words in such a way. It's a wonderful video, and I think she does a great job at capturing the essence of what I was trying to convey. I wanted to share it with all of you, and hope you enjoy it.

Saturday, September 5, 2009

The Bedridden & Stranded

As everyone is no doubt already fully aware, there's a lot of talk out there right now about health care reform. In my opinion, there is no question that our health care system is in dire need of change. Whether or not I think the current controversial bill has the best possible resolutions, I remain uncertain. I agree with much of it in a general sense, but I also still have a lot of questions.

However, here is something I do know with some measure of certainty: there is no health care for the bedridden. Not really. Not unless you are in a nursing home or assisted living center, where doctors are easily accessible and willing to come to your bedside. But what of the young and chronically ill who are too sick to leave their home? We are essentially left stranded.

In the "olden days," it was the norm for doctors to come calling to the sick patient, rather than the other way around. Today, for the most part, that is unheard of. While there are indeed some mobile/visiting physician networks starting to form in some areas around the country, they are few and far in-between.

I am fortunate to have found a caring naturopathic physician who is willing to come to my home. However, his services are limited. He can order blood tests, prescribe medications and make a general assessment of my condition. But he is not an internist. Nor is he a dentist, an eye doctor or a gynecologist. When a symptom or problem doesn't resolve, he can't simply refer me to a specialist to further look into the matter, because I can't actually GO to a specialist.
When this issue comes up, people often ask me "Why can't you just use a wheelchair, and get someone to take you and help out?"  They assume I'll be extra tired for a week or so, and then I'll bounce back.  But I'm afraid it's not that simple.

One of the most debilitating symptoms that comes with ME/CFS (and arguably the hallmark of the disease) is called post exertional malaise. This, generally speaking, refers to a worsening of all symptoms upon exertion. For some, depending on disability level and degree of exertion, this worsening can last for days or weeks. For others, it can last for months or even years. And for a few, the setback can be (or at least appear to be) somewhat permanent.

I have never made it to a doctor's office without my condition worsening. I don't tend to ever fully recover from the outing. And at this point, bedbound and requiring assistance with virtually all tasks of daily living, I can't afford to get any worse. Even when my doctor comes to my home for a 45 minute appointment, the interaction alone can set me back for weeks.

Last March, I made it to the dentist for a filling. It was my first outing in two years. It took me months to recover. I have more cavities that need fillings, and will soon require another outing.

I haven't seen an eye doctor since 2002. I haven't had a gynecological exam since 2005.

What are those in my situation to do? I know I am not the only one in this position. I've corresponded with several others facing the same challenges, and no doubt there are thousands more. It has been estimated that approximately 25% of those with ME/CFS are fully disabled, and many of those are bedridden or completely homebound. Given there are anywhere from 1- 4 million people afflicted with this disease, such a disability rate indicates that there is a significant number of people out there who are likely not getting appropriate health care.

And then there's the cost. I am on disability, and am thus on Medicare. However, I am fortunate to have secondary insurance through my former employer. While my insurance makes a significant difference in covering the cost of certain medications, it will not cover the cost of my doctor's visits, any lab tests he prescribes (since he is a naturopathic MD), nor any treatments considered experimental.

In the many years I have been ill, despite having and paying for insurance (both government and private), I have spent well over $100,000 on health care needs. I've wiped out my entire life savings, and for years, every penny of my yearly disability payments when to cover medical expenses. And I'm one of the fortunate ones, because I actually receive disability payments.

In all the discussions about what is wrong with medical care, I've yet to hear much said of the bedridden. Why is that? I suspect in part because we are invisible. No one knows about us except for our families and closest friends. No one sees us. And, unless we are lucky enough to be able to get online as I have been able to do of late, no one really hears us. So I'm writing this for those who are not heard. I'm writing so that, if nothing else, people know we are out there. And we need help.