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,
Peggy

12 comments:

Peggy said...

I want to thank those who have already contributed to this fund -- you are all angels and I am grateful to know so many incredible activists and generous human beings.

Also, I wanted to add to this post that I owe a lot of gratitude to those who *did* help me survive during the difficult time given only cursory attention here. Several people contributed to my survival in ways I will never forget, sometimes from long distances, and for this I am eternally grateful.

naomi said...

Oh Gurl,

What a fucking ordeal!
I just helped a family who came to the church I sing at, who were without food so I am broke but I will give you money from my next disability check Peggy, in the beginning of January. I am glad you are alive. It sounds horrible.

Yours in the struggle,
Naomi Finkelstein

Peggy said...

Thank you Naomi! You are a wonderful activist!!

Rebecca said...

Peggy,

Thanks for your years of activism on behalf of our community. I am terribly upset to hear of your struggles and pray your strength will return.

Peggy said...

Rebecca, Thank you so much for your kindness!!

Susie Bright said...

peggy,

please give one of your friends who's helping you my name and number. I get so worried when you haven't posted for awhile and I realize I don't know a single person who knows you, I'm not on the phone tree.
susie 831 480 5110 susie@susiebright.com

Peggy said...

Susie, consider it done! Thank you for your warmth and concern.

Peggy said...

STATUS UPDATE:
The fundraising is going very well so far -- and I want to thank everyone for the outpouring of love and support. This Winter is so much better than last -- I still have a long way to go to recover my pre-Ice Storm health, but I am slowly making gains due to intensive treatments, and generally I get sicker in the Winter so the fact that I'm holding up at all is a miracle. I will post to my blog soon!

Herrien said...

Nice post, thanks for sharing this wonderful and useful information with us.

Green Tea

Peggy said...

Dear Friends,
Someone just informed me that donations were getting rejected from PayPal! Please know that if you have not received a thank you from me, I never received your donation. If there is a problem of any kind, feel free to email me: peggy@peggymunson.com
Sorry for any confusion! For the most part the PayPal button is working. xo Peggy

Moineau En France said...

hi peggy. i've had two such incidents of nine months and one year. i know how awful it is to be dirty and so terribly sick and wondering if recovery is even possible. such long periods wear out our soul. human contact is painful. what a way to live while we wait.

i bought "pathogenesis" several months ago and i love your innovative poetry. i've encouraged friends to buy it, and some have.

i wish i had something more to give than simple love and gratitude for you. what we need is a charity set up that takes applications, just for such times when people with ME need this kind of help. that might even get some visibility for us.

i'm going to think about this...

sending you love. ~laura tattoo

Kamala said...

I followed your post from another's blog related to xmrv since I saw that you talked about a specific strain of bartonella. I too have been diagnosed w/ this from a blood smear, although it does say bartonella or mycoplasma (which I thought didn't show up on smears???) Anyhow, mine is both inter and intracellular and I've already been told it's not the top 2 that's most often reported. So how did you get such a specific strain diagnosed? I tried to read through your blog but didn't find the answer to that. I too have been sick for 3 yrs now and have at times felt on the brink of dying myself. I'm only recently able to use the computer to read and write more often. The hypersensitivity you speak of I'm very familiar with. Anyhow, just wondering if you could share about the testing, I also have Lyme, CFS, FM, Lupus, Hashimotos, Ehrlichia and recall getting sick after a cat attacked me years ago... or it could be from the tick??? I've been denied any real treatment for Bartonella due to the lack of evidence ie: PCR testing. Thanks and I hope that you continue your progress towards wellness.