Thursday, December 03, 2009

Dear Friends,

As some of you know, my health has worsened substantially over the past five years since I acquired a chronic bartonella infection that caused serious cardiac issues, and since I contracted chronic neurological Lyme on top of my already-severe case of ME/CFS and MCS. Just as things were starting to improve on proper meds for bartonella and Lyme, the worst Ice Storm in 30 years hit Massachusetts. Without power, I lost my heating system, well pump, lights, stairlift, and was thrown into a catastrophic state of emergency. I ended up in the hospital for 4 1/2 days. Hospital stays can be lethal for people with chemical sensitivities and ME/CFS. As ME writer Jodi Bassett states, "It is very common for severely affected patients to spend 2 months, 6 months, 12 months or even YEARS or longer recovering from a hospital trip. For example, some patients have not regained their previous very low-level of health 2 or 4 years after a trip to hospital. Some never do recover, and for some patients the overexertion is so severe as to be fatal." Dr. William Rea has written "chemically sensitive patients can -- and do -- die in hospitals from exposure to chemicals but it is always blamed on organ failure or recurrent infection," and ME/CFS patient Sophia Mirza died after a serious decline prompted by forced hospitalization.

After the hospital, I collapsed so severely nobody thought I would survive. I spent most of this year in horrifying, POW-like conditions -- trapped in a small corner of my bedroom and the adjoining bath, too ill to even crawl to my bedroom door, desperately fighting to get enough help to stay alive. I could not speak out loud as it would wind me too much and had to communicate by written notes, generally only had about four minutes or less of human contact a day, and was just waiting to die. Because I was so weak and had such insufficient care even for tasks like help getting to the toilet or emptying a bedside commode, I usually spent ten hours a day lying on the bathroom floor near my bed, so I could be close enough to the toilet to use it. My hyperacusis also became so severe that the sound of someone setting down dishes beside my bed was excruciating, so staying in the bathroom helped me to avoid the noise. I would crawl to the bathroom, and spend my days barely moving on a pile of towels as I watched ants make grid patterns on the ceiling, then crawl to my bed to eat my meals. Baths consisted of wiping myself down with baby wipes infrequently, and I was too weak to change my clothes but every four or five days. Over time, I also lost my ability to breathe and had to begin using a non-invasive ventilator to assist breathing. It was terrifying thinking I would die like this, but not as terrifying as not having the basic care I needed to die a humane death. During this entire time, I had to fight to keep the medical care and personal care attendants I had, which was already insufficient, and I dealt with regular gaps in care that were life-threatening.

Miraculously, due to aggressive treatment interventions, I have recovered some of my functionality after a year of struggle. The total bedriddenness lasted over seven months. While I have come a long way from where I was six months ago and it's a miracle I'm alive, I have a quality of life so poor at this point that it could only be described as barely existing.

I am inviting you to donate to my medical and caregiving fund so I can regain some of my abilities and resume the writing and activism I love so much (and blog more!). With the new discovery that a retrovirus named XMRV likely causes ME/CFS, there IS HOPE on the horizon, but also other treatments that are helping small segments of ME/CFS patients right now that I would love to access. I have utilized some treatments the past year that have quite literally pulled me back from the brink of death. I am very hopeful that with enough determination and support, I could get much better. I know this because SOME treatments I have done have already given me improvement -- but have also drained my savings. While I'm no longer fighting for my life every minute, my life still hangs in the balance. The ME/CFS treatments that have helped me are considered "experimental," and thus are not covered by insurance. Because I must have doctors and chemically-safe nurses visit me at home, I also pay for much of my conventional medical care out of pocket. In my case, the most
expensive thing is practical assistance to meet my day-to-day care needs. Since 80-90 percent of home care in America is provided by families, people like me who don't have families willing to provide care are in an impossible situation -- around-the-clock care where I live costs around $150/day and the state is cutting back on its personal care attendant services. Another relapse, due to my inability to afford the care I need, will most likely be fatal at this point.

I barely lived through this year, and you could help me to "live for the cure" as AIDS patients used to say! Any donation, great or small, will be hugely appreciated and will go directly toward my medical care.

Donations of $15 or more get a free "ask Peggy anything" email (in other words, you can ask me any question via email -- an expert opinion, a personal question about living with chronic illness, love or life advice, whatever you want) -- some of the best questions may get posted on my blog (so let me know if you're okay with this and if you will let me include your first name or prefer to be anonymous). I'll answer anything that isn't offensive. My expert areas include any of the blog topics to the right, or you can just ask me about something else. Please write the text of your question in the comments field of Paypal when you make your donation, or email your question to peggy at peggymunson dot com or include it in the comment field of your donation (I will match emailed questions to the name on the donation, so make sure you're using the same name and include your name on each or I won't be able to respond).

Really generous donations $100 or higher can also receive a personalized, signed copy of my latest book, Pathogenesis!!! (be sure you include a correct mailing address and any requests you have about how you want me to sign the book, written in the comments field of PayPal or sent to peggy at peggymunson dot com!!).

NEW! Thanks to the generosity of my writer, editor, educator, and sex goddess Tristan Taormino, super generous donations of $150 or more can receive a free video from Tristan's PuckerUp collection! (some titles excluded).

For those who can't give financially, please know that your support has already meant the world to me. Without the kindness and encouragement and practical support of so many of my friends and contacts and total strangers, I would not have had the will to fight. Your kindness, prayers, and good will have meant the world to me, so thank you from the bottom of my heart.

The button below will direct you to a safe donation page:

With love and gratitude,