A wonderfully written letter by my Lyme friend Alyssa.
As the year comes to an end I like to spend some time thinking about the past 12 months. I have had so much goodness this year and so much to be grateful for. On a melancholy note...my request to everyone for 2012 is to....please not forget about "us"
I renew my vow to myself and to the Lyme community to continue to fight for proper treatment, accurate testing, support for those fighting this horrible disease and I ask you to do the same. Will you please not forget about "us"??!!!
December is closing in on its end and these last few days are filled with a sadness....The Lyme community has lost yet another. There has been yet another attempt at suicide. The year was filled with this news....people whose bodies can no longer fight this disease off and people who feel as though they have no other choice but to end it themselves.
Tonight I sat and wept....huge sad tears....tears of frustration. This could have been me...or my son...I am scared for the many who I have become so close to who are struggling with Lyme right now. I fear for their lives and everyday I hope they take one step forward and not backwards.
If you would be so kind....this year when you make your resolutions...will you make one saying
you will not forget about us? That you will stand by our side please? We need all the help we can get.....
Alyssa
(Lyme Angel)
My answer: Yes! I'm about to send a letter to a restaurant advocating for those of us with MCS. I had to leave in the middle of my dinner because they sprayed a toxic cleaner next to me while I ate. I'm advocating for myself, but also for everyone who is not well enough to advocate for themselves. When I started working with at-risk children I became an advocate for children. This year I became an advocate for Lyme and chronic illness. Wherever there is a need, as long as I have even a tiny speck of strength, I will advocate, for as long as I live. This is my promise. I will never willingly break it.
May 2011 be full of positive movement toward the goal of all human beings being treated with dignity and love! Thank you to each and every one of you, who I know contribute daily to this goal. You are all inspirations to me. With the New Year, let us have a renewed sense of hope! As Cesar Chavez and Dolores Huerta said, "Si, se puede!"
The Lyme Spot is about having Lyme: living with it, putting up with it, embracing it, damning it, figuring it out, not figuring it out, but most of all...it's about community. I will be sharing my experience, my feelings, and all the things I know that help me get through my days and keep me feeling positive, or at the very least keep me alive! But please, also come here to share your experiences, feelings and all the things you know. Together, we can get through anything...
Spreading Awareness is KEY
I just asked a man to not sit so close to me because he's wearing a fragrance and he argued with me about it for 5 minutes. Of course, I was getting more lightheaded and woozy with every passing second. He seemed to not believe me, but not so much out of incredulity as out of an anger that it was going to stop him from sitting where he wanted to sit. I painstakingly explained to him that I'm sick and am allergic to everything in the environment and that I'm pretty much allergic to everyone, as well as that I had already asked two other people not to sit so close. His response was, "I don't understand anything you are saying. None of it makes sense." I apologized many times and said, "I'm so sorry, I can't help it or change it. Being near other people's clothing and perfume makes me very sick. I don't like it, but I can't do a thing about it." So then he started walking away and I said, "Thank you for your understanding." He turned around and came real close to me and said angrily, "I don't understand shit. Everything you say is bullshit." He moved toward me in an intimidating manner, as if to hit me, but didn't. Then walked away.
Santa Brings Coal...And Becky Brings Reality...
The other day my girlfriend said something that was so funny I about peed my pants, but also, really hit home. It went like this:
Now here is yet another reason my girlfriend rocks.
Becky: Since I can't get gifts for my family this year because we only have money to spend on your meds, I'm going to give my family lists for Christmas of all the ways they are wonderful. I'm going to give your family lists of all the ways they suck.
Adi: That's not really in the Christmas spirit...
Becky: Yes it is! Santa brings coal! Becky...brings reality...
Now here is yet another reason my girlfriend rocks.
Trine Tsouderos: A case of modern dubious reporting
Today this article, by Trine Tsouderos was published in the Chicago Tribune, and claimed the existence of Lyme disease is dubious. In this post I will refute that claim with facts.
Open Letter to a Shining, Glittering Soul
Dear Rebecca Michael,
I didn't think there was anyone in the world like you.
You are the third partner I've had while I've been sick with Lyme. Of the three, you are the only one who believed I was sick, who believed in my ability to survive, and who has helped me get on a path toward healing. It's true that my previous partners and I didn't have the benefit of the knowledge that I had Lyme. It's true that my previous partners would have just had to take my word for it that I was as sick as I was telling them. Some might say that made all the difference, but I say no. I say, you would have believed me even if I hadn't had a name for what was wrong with me. It was never the name you believed in, it was me. When I told you I was hurting and was allergic to everything under the sun and when it was bad I thought of killing myself, you...just...believed me. When no one else would believe me or believe in me...you did.
I didn't think there was anyone in the world like you.
You are the third partner I've had while I've been sick with Lyme. Of the three, you are the only one who believed I was sick, who believed in my ability to survive, and who has helped me get on a path toward healing. It's true that my previous partners and I didn't have the benefit of the knowledge that I had Lyme. It's true that my previous partners would have just had to take my word for it that I was as sick as I was telling them. Some might say that made all the difference, but I say no. I say, you would have believed me even if I hadn't had a name for what was wrong with me. It was never the name you believed in, it was me. When I told you I was hurting and was allergic to everything under the sun and when it was bad I thought of killing myself, you...just...believed me. When no one else would believe me or believe in me...you did.
How I Make My Turmeric Capsules
I've been getting a lot of questions about how I make my Turmeric capsules so I thought it would be helpful to make a video!
Things To Remember
You know you've chosen bad friends when your health declines and they see your vulnerability as a great opportunity to attack you. That is definitely a moment where you rethink who you chose and who you will choose from there on out!
Adi's Fall-Apart Tender Tomato Chicken!
Ever since I made that turkey for T-day, I've been all into fowl! I switched over to chicken because it's more reasonably priced and WAY easier to transport. My fave is dark meat, so I've been having Becky pick up thighs or drum sticks or whole legs. I can't help it...I'm a leg guy...;-)
The chicken is really hitting the spot. It's easy to make, healthy for Lymies, and you can turn the broth you cooked it in into yummy soup in a bout 60 seconds flat.
The chicken is really hitting the spot. It's easy to make, healthy for Lymies, and you can turn the broth you cooked it in into yummy soup in a bout 60 seconds flat.
The Healing Compassion of Father Michael Bassano
"The spirit of compassion goes beyond language, culture, tradition...and makes us one with all living beings." -- Father Michael Bassano
We with Lyme disease know what it is to be sick. We know what it is to fall ill and not get better. We know what it is to be abandoned. I look at the patients in this video and I know some of what they go through. It's true, I don't know what it's like to be almost dead from AIDS. I don't know what that is like because the physical effects of AIDS are different than those of Lyme. What I do know is what it's like to be bedridden. I know what it's like to be written off by family, to be abandoned and have no one.
We with Lyme disease know what it is to be sick. We know what it is to fall ill and not get better. We know what it is to be abandoned. I look at the patients in this video and I know some of what they go through. It's true, I don't know what it's like to be almost dead from AIDS. I don't know what that is like because the physical effects of AIDS are different than those of Lyme. What I do know is what it's like to be bedridden. I know what it's like to be written off by family, to be abandoned and have no one.
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