Please Don't Forget About Us - By Alyssa

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!"

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:

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.

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 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.

Prayer of Forgiveness

Because we the afflicted get persecuted, because we the afflicted need a way to heal our hearts.

Broccolini with Roasted Garlic Sauce and Toasted Almonds

This is a delicious Lyme friendly meal. Extracting the roasted garlic is a little involved so I like to set myself up in front of a movie and extract away!

Wait, Who Speed-Walked 4 Blocks? Yeah That's Right....I Did.

So, it is finally truly cold out. Winter arrived this night with the nip in his fingers and he turned my dear little toes pink.

I'm in a little bit of a situation here. I have only one outfit I can wear. Due to severe MCS, I have an amazing amount of trouble finding clothing I can wear. What does that mean? That means, most clothing makes me feel as if I'm about to pass out. I won't go into the slew of reactions my body goes through that causes me to feel that way, just imagine that you have a headache that borders on a migraine and you constantly feel as if you're going to pass out. If I don't buy the right clothing, this is how I feel when I get dressed. Then, when I remove the clothing, I no longer feel this way. I have a chronic illness, so of course, I can't say that I feel fine when I'm naked, I don't, but I certainly don't feel this way. Now, when I find the right clothing, it usually bothers me some at first because all clothing gets doused in some chemicals, but that wears off and then I feel as well with that outfit on as I do naked. Problem solved, yes? No.

Images of Heart

This slide show was made by a new friend of mine who I met through the 29 Day Giving Challenge . It's full of such loving messages and felt uplifting to my heart so I wanted to share it. Feel free to pass it on!

You all are loved.


Find more images like this on 29-Day Giving Challenge

Adi's Turmeric Log

This post will be my Turmeric Log, where I will document my experiences using Turmeric as a painkiller. I will just continue to update it as I go.

November 19, 2010

5:30pm - I purchased turmeric root powder in bulk. I added about 1/8 of a teaspoon to my noodles. It numbed my tongue a tiny bit and that lasted for about 5 minutes after I finished eating. From just that little bit, I feel a sense of well-being. My body feels happier.

Turmeric Instead of Ibuprofen or Prescribed Pain Meds?

Recently I realized I might be making a rather wide presumption in my unconscious assumption that all people who suffer from Lyme take as many pain killers as I do. I posted that I take 10 ibuprofen at a time, that less does not help, and that sometimes I have to take that amount more than once a day. I got very eye opening responses.

Wellness Blast! A Health Drink

A few years ago I used to drink this every morning! It was introduced to me by a friend that worked at my favorite cafe. She was kind enough to notice I was quite unwell and made me this! I was fighting a reoccurring damp, wet cold and it was like an oasis of warmth and healing. At the time, we called it the 'sick drink', because she would make it for me when I was sick. I changed the name because 'sick drink' could sound like something that makes you sick and who wants to drink that?

I named it the Wellness Blast because that's how it feels to drink it. It feels like a blast of wellness. After becoming homeless for a stint due to indoor allergies, I had no way to make this drink so I promptly forgot all about it, but recently I've been looking into alternatives to taking lots of ibuprofen for pain and I recalled this drink!

It is such a wonderful drink and I've gotten such great benefit out of it that I wanted to be sure to share it with you all in the Lyme community.

Enjoy!

The 29 Day Giving Challenge

Today I found out about the 29 Day Giving Challenge. I immediately felt so good about doing the challenge that I decided to start it today! Why do I feel so good about doing it? Why am I starting it right away? Why am I posting it on my Lyme blog? I'll tell you...

How do I make it to the other side of this damn disease?

I don't know about you, but the above question is probably my most popular thought since I got too sick to work or leave the house very often. It's the place my mind goes when I feel isolated and therefore depressed and therefore generally unhappy and therefore purposeless and therefore...hopeless. The above thought has ultimately been a hopeless thought for me, not because it is inherently a hopeless thought, but because for the last two years I've been thinking it and coming up without an answer. Rather, I suppose it would be more accurate to say I've been coming up with only one answer and that is: I don't have an effing clue.

25 Reasons Why Being a Lyme Patient Automatically Makes You a Badass

1. While some people have a comic book collection or collect rare stamps, you collect infections, and happen to have more than a loaded petri dish. 

2. You take more than 55 pills in one day, and can swallow 6-10 at one time. 

3. When you fill out a "symptom survey" at the doctor's office, you begrudgingly check off 47 of the 60 symptoms listed. If you were being completely honest with yourself, you'd probably check off 52. 

4. You've opted to have a portacatheter surgically placed in your chest...while you were awake. 

Adi's Salt/C Protocol

I've gotten an influx of requests for information about the Salt/C protocol and being on it. I thought I should make it more accessible for everyone, so here's the Salt/C protocol I use:

Losing Friends Because You Are Sick: Yes, it's really happening

This week I've lost two friends. Well, 'friends'. And well, the truth is never as black and white as when we first write it. One of these 'friends' was never really a friend, and I had no idea until she ended our friendship over email for no particular reason that she could state, but then, in retrospect, I realized that she had never really seen me. The other 'friend' was never really a friend and I knew it and have known it for a year and a half. I did get a little tricked though, because when I would tell her I was waiting for her to show up as an actual friend, she would tell me she never had been good at showing up for other people and would change...really she would. She didn't.

So what's my point? My point is, I think both these people could not handle my being chronically ill.