Friday, October 29, 2010

Another Lyme death...can it really be?

Greenwich Village Death Ruled A Suicide:

Not to depress people further because I really would like to put positive news on here as well, but reality is hard and Lyme disease reality is really fucking harsh. It is sad, but I've been told suicide is the number one cause of death in Lyme patients, and there have been a lot this year. After my friend Lindsay's passing last month, I just heard about this Lyme suicide:

Greenwich Village Death Ruled A Suicide

The note states: A suicide note was found in Event Planner Bryan Jacobson's apartment at 250 Mercer Street, and the Daily News reports, "In the note, Jacobson wrote that he could no longer deal with his health issues, the sources said. He suffered from Lyme disease. Investigators believe Jacobson first tried to suffocate himself, and when that didn't work, he jumped from a window about 10:45 p.m." A neighbor told the Post that Jacobson's business wasn't doing well.

What irritates me is that another link states that neighbors said Jacobsen, who planned the 2008 wedding of Raphael De Niro and Claudine DeMatos in the Bahamas, had fallen on hard times.

“He was definitely depressed. His event planning business wasn’t doing well, and that might have been part of it,” said one neighbor. It seems that he just took his life because of hard times....That may be, but knowing the extreme nature of this disease, my question is:

HELLO, what about the Lyme Disease? WHY was it skipped over like a safety pin on the road? Is so little known about the actual Lyme patient experience (the answer is yes) so that people wouldn't even imagine he would take his life because of the horrific physical and emotional suffering that accompanies it? Not to mention it strips you financially bare.

So much is known about the difficulties of living with cancer, HIV/AIDS, MS, ALS, and I think the time has come for Lyme.

If the general public was educated about Lyme, one could perhaps easily link the fact that he had fallen on hard times (possibly) because he was ill with Lyme Disease, an illness that most people know very little about and that strips you of so much more than just physical functioning, but your mind and your cognition. Every person I know with Lyme, able to work or not, faces major challenges with their illness affecting their work and day to day living.

Just food for thought. Again, AWARENESS is so key. I'm not trying to march in with Lyme colored glasses and blame Lyme for everything. I am trying to open a dialogue, which sadly, most of the medical community REFUSES to hear about.

That's where I come in.

If it means I have to scare the living shit out of people to explain this disease until something is done in this country about the state of this epidemic, so be it. If it means I have to spend the first three years when I'm back on my lawyer feet testifying in front of Congress, so be it.

I am sooo sick and tired of this disease on some days after years of this shit; last night after my infusion, I just wanted to lay on the ground and flail about and cry til someone rescued me. But it's not going to happen. Then horrible, tragic things like this occur, and it reminds me to delicately peel my teary sticky face off the ground, realize no caped superman is coming to hold me in his arms, get up, and FIGHT.

Wednesday, October 20, 2010

How the Documentary "Under Our Skin" Saved Nathan Land's Life

"Under Our Skin" Documentary saved Nathan Land's life....a sadly too common story about misdiagnosis for years and being told you've made up a disease in your body when you really have late-stage many more of these stories it will take to change the mainstream medical establishment (esp. the IDSA -Infectious Disease Society of America), I don't know....

HERE is the quick story:

An excerpt from his story which I know is probably the same story with most Lyme patients:

"I also began seeing every type of doctor I could find. Neurologists, cardiologists, psychologists, a rheumatologist, a gastroenterologist, etc. I was examined by anyone and everyone I could find. The answers were always the same. “You look like a healthy strong young man. You need to go out, live your life and stop thinking you are sick. The mind can really be powerful. You should go to see a psychologist, they can help you.”

I would like to make a personal THANK YOU to Julie and Sara (my 2 lovely SF friends) for making a great contribution to Turn The Corner Foundation on my behalf, a non-profit supporting research, education, awareness and innovative treatments for Lyme disease and other tick-borne diseases. Turn The Corner Foundation was a funder of the amazing documentary, "Under Our Skin," profiled above.

Friday, October 8, 2010

Catch 22

I had to stop my new round of treatment (IV Rocephin) about 5 days ago because I had too much pancreatic and gall bladder pain. My doctor made me come in for a physical exam a few days ago (she always manage to poke my organs in ways that are ridiculously painful). "Does that hurt, Mona?" "Um, yes, it hurts when you jam your four fingers like a jackhammer under my rib cage into my liver."

Anyways, my lab tests were abnormal and my extreme nausea (looking at food made me want to barf) and stomach problems made it clear that my body was not going to tolerate the new round of IV Rocephin (despite the fact that it helped my Lyme immensely and I was doing so much better on it in just a week).

I keep running into this problem
- this is now the 3rd or 4th time in the last 7 months that I've had to stop treatment and my body (mostly my organs and my stomach) will not let me take the treatment. Messing around with your organs is no small matter, and my Lyme doc knows the risks of treatment. I am unusually sensitive to everything, so of course my little body throws tantrums and my organs freak out at many meds even though they are the only thing that help kill the Lyme Disease (for me I mean - I tried herbs for 6 months but after a while, got much worse and needed the big drugs as opposed as I am to them). It's a Catch-22 that I have struggled with a lot now.

Stay on the meds, health improves! Then my organs are in excruciating pain or I have acute pancreatitis or my liver or gall bladder or are in writhing pain and I am hunched over crying from that pain. OR Get off meds, health deteriorates quickly (because the Lyme is no longer being killed and Lyme symptoms rebound quickly), and lay in bed til 4 pm all day with chills, pain, fever, and hopeless that I will never beat this disease and feel like an 80-year old woman forever.

When I first had this issue back in April (extreme organ pain and rejection of meds, and having to go off meds for a month at a time), I basically lived at the hospital - had to see tons of GI and liver specialists, and undergo tons of different tests, an endoscopy (honestly the sedation part of that procedure might have been one of the best hours of the last year - on the way home from the hospital, I kept taking pictures of myself in the car with my phone laughing like a drunkard while my Dad kept shaking his head), a barium X-ray, abdominal ultrasound, CT scan, tons of lab tests, and an MRCP (basically an MRI of your biliary ducts to see if they are clogged). They were all normal for the most part, but every hospital gown I put on and every injectable dye or substance that went into my veins or my mouth was another painful rung on this ladder towards confusion and still no answers. I had a minor pre-ulcer, and then found out I possibly had had PSC (primary sclerosing cholangitis), what can be a very serious liver disease. Of course I read online about it and IMMEDIATELY (Jo, you can relate to this one) thought I was going to die and cried for 2 days. My friend even said she would donate her liver to me. I love my friends. The Internet can be very dangerous at times, and I panicked because if I was going to die in 20 years, well, damnit, I wanted to know! Luckily, I later found out I did NOT have PSC, but it was a good lesson into DON'T GO THERE MONA UNTIL YOU HAVE TO.

Back to the current story....The catch-22 is where I am tonight. Cannot take meds and stomach and organs hurt so bad. Want to barf. Don't know why, but know cannot take this round of treatment. I feel trapped. Like I cannot win. I cannot take the meds. I cannot NOT take the meds. Either way, I feel like shit. I feel hopeless, like I will never get better. Like this is the rest of my life. And then I start freaking out. I start peering into the future wondering if this is my life. It can't be. Can it? But just ten days ago, I was feeling so much better than I had (because of the IV Rocephin), and sure enough my body rejects it and says no.

There is no question here - stopping this medication is necessary because damaging my organs is not an option. But what about my suffering in the meantime until my doctor says I can resume treatment (and try another drug, probably IV Doxy is what she told me today) next round? She has no answer for all the normal detox routines that can help me feel a little better but at the end of the day I am huddled in the fetal position on a Friday night totally confused about my life and what is happening to me. Four steps forward, two steps back, four steps forward, eight steps backward, eight steps forward, 1 step backward, on and on and on it goes for years until you feel like you are in some sort of TORTURE WHEEL.

Mentally, it's unbearable. I tried to call a few friends. Nobody was answering - it's Friday night after all. Maybe I shouldn't bother them - I always feel guilty (even though I should not) about bothering friends with my problems related to Lyme. I then start thinking about Lindsay, my friend with Lyme who took her life, and wonder what would have happened if she had just picked up the phone. Then I start bawling hysterically, crying, and crouch to my knees because I cannot bear the pain of her loss or this disease or the world from a standing view. I keep asking myself why she did it, why she did it, even though I know the anguish she experienced. I am in physical and emotional pain but how could she do it...she told me she never would.

I am in the midst of a big transition and her death came as a horrible shock. I'm still grieving. I'm still angry. I'm still sad. I'm still scared as shit some days like today.

Will I ever be OK again? Dear God, I hope so.