Heroes

Ryan White (credit)

Ryan White was a poster child for the HIV/AIDS epidemic in the 80s. Ryan, a hemophiliac, became infected with HIV after receiving a contaminated blood transfusion; he was officially diagnosed with HIV in 1984, when he was in his early teens.

Ryan, who was thrust into the spotlight after a very public court battle over his expulsion from school because of his illness, openly discussed the trials and tribulations of his disease. Ryan fought to increase public awareness of the disease and emphasized the great need for research for the growing AIDS epidemic.

In 1989, the movie The Ryan White Story was aired. As a child of the 80s myself, I can clearly remember the impact the movie had on me. I was blown away by the bravery of this young soul, wise beyond his years.

Ryan's story exposed an ugly side of medicine, calling attention to a disease which was being largely ignored by the medical community because it was steeped in ugly politics. Amid bullying and death threats, Ryan White bravely fought to change public perception of HIV/AIDS, a disease that had previously been thought to only affect the gay community.

On several occasions, I have heard certain aspects of the early HIV/AIDS controversy compared with the chronic Lyme disease controversy. Just like with HIV/AIDS, the medical community has closed its eyes on chronic Lyme disease; insurance companies are denying coverage for treatment; doctors are losing their licenses for treating; patients are dying from not being able to get properly diagnosed and treated.

Ryan White was an innocent child caught in the middle of the HIV/AIDS controversy; my friend Juliana King is an innocent woman caught in the middle of the grossly mishandled Lyme disease epidemic. Like Ryan, despite the controversy surrounding her illness, Juliana's passion and spirit inspire all who know her. Her bravery in the face of sickness never ceases to amaze all who learn of her brave battle with Lyme disease.

Just like I was blown away by The Ryan White Story, Juliana's own story is amazing. She has endured more than most of us can imagine (including recently overcoming an excruciatingly painful collapsed lung after having surgery) and she is still smiling!

Lyme disease recently caused Juliana's long, blonde hair hair to start falling out in clumps, so she bravely shaved the rest of it off. Despite seemingly insurmountable obstacles, Juliana always has something positive to say, and her indomitable will and unwavering hope has turned her into one of the Lyme disease community's biggest and most loved heroes.

Ryan White played a pivotal role in changing the way the world looked at the AIDS controversy. My friend Juliana is changing everything you thought you knew about Lyme disease. Ryan and Juliana are heroes. They didn't ask to be sick, but they moved/move mountains anyway. We can learn a lot from these two!

 To learn more about Juliana's story and how you can help:
Hope for Juliana
Juliana's Facebook Support Page

Juliana and her son in better times

To learn more about Lyme disease:
Columbia University Tick-Borne Research Center
 Basic information about Lyme disease

To learn more about Ryan White:
HRSA HIV/AIDS Programs

The Truth Is...

Over the past week or so, I've sat down to write a new blog post about how I've been doing, but, well, the truth is, I'm not doing well. The truth is, I haven't wanted to put that in writing. I haven't wanted to utter the words out loud; I haven't wanted to set them down in stone, or, well...publish them, but here they are: I am in a funk.

The truth is, I'm tired of Lyme disease; I'm tired of fighting; I'm tired of feeling awful. I'm just so tired. I'm tired of trying to keep my chin up; I'm tired of looking for the positive. I'm tired of feeling like the parent who has to put on a brave face for the kids. I'm tired of taking pills. I'm tired of the endless symptoms. But most of all, I'm tired of the pain.

Yes it's true, I'm stubborn as hell and I will beat this. This is one of those times when being tenacious is vital. But for now, I'm so damn frustrated, and I just want to throw myself a pity party. The good news is, you're all invited. But the truth is, I've gone into PJ mode and I'm not coming out until I'm better.

(Credit for this awesome photo: here)

Friends

 "When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand.  The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares."  ~Henri Nouwen 

Photo credit here

May we always be blessed enough to have a friend like that and may we always remember to be a friend like that!

Florida or Bust

Right now, the temperature outside is 54 degrees; inside the house, my thermostat reads 68 degrees. That sounds pretty cozy, right? I wish I could say yes; I really want to! I wish I could happily join in with the chorus of cheerful Facebookers hoorahing over the sudden nip in the air. But the problem is, I'm freezing cold already.

Don't get me wrong--fall is great. I love going for drives in the country and looking at the reds and oranges and yellows everywhere. I love Halloween and Thanksgiving and eating pumpkin pie and carving jack-o-lanterns. I love warm socks and mittens and scarves. I love hot chocolate and I love working on my quilt. I love snuggling under a blanket (or ten!) and watching a movie. Oh fall, it's not your fault that I get so cold!

Instead of oohing and ahhing over this season that I used to love, like everyone else, I'm already scrambling to keep warm. With this drop in temperature, the bone-numbing, hypothermia-like coldness--in my world known as Lyme chills--has already crept into my body, reminding me that I am still a captive of Lyme disease. As I type this, I'm wearing knee-high wool ski socks, leg warmers, fleece pants, a thermal shirt, a regular shirt, a down vest and I'm snuggling my microwavable rice pack for extra warmth. And I'm still shivering.

The coldness that comes with this disease is--for lack of a better word--intense. So, would you like to know my secret for combating the I'm-so-cold-no-matter-what-I-do blues? It's the same as all of my other secrets--ice cream! I'm not supposed to have much sugar, but, hey, it's my off-week for antibiotics; cut me some slack!--and yeah, so maybe I'm already freezing cold, but those two things just cancel each other out and that means ice cream always wins! Plan B was to retire to Florida, and since 31 seems a bit young for retirement (never mind the fact that I'm a stay-at-home mom), I will stick to Plan A (ice cream!!!).

Sorry, fall! You lose!

Good News!

(see more Historic LOL)
Good news! This man is also working on a cure for Lyme disease!

Sayonara

                                                                                               September 10, 2011

Dear Borrelia Burgdorferi,
You put up one hell of a fight over these past three days. I didn't think you had it in you after the threatening letter you received from me on September 8th. Sure, I did a lot of resting and watching movies this weekend, but that wasn't because you were kicking my ass or anything. And maybe I had several instances when I dropped like a fly and was out of commission for several hours, but that wasn't because of you, either. That was probably because I tripped over my shoelace and then I fell asleep on the floor right there--just because it was so comfy resting on the hardwood floor. Not because of you!

So, Bb, maybe I seemed a little bit off this weekend, but, like I said, it was not because of you. It was probably because it is ragweed season, and not only that, but the days are getting shorter now. And Borrelia Burgdorferi, one more thing: I'm not crying--it's just been raining. On my face. 



Sayonara,
Alyson "Still-Kickin' Your Ass" 1derland

Preparing for Battle

                                                                                     September 8th, 2011

Dear Borrelia Burdorferi,
Prepare for battle! I have spoken to The General and we have upped the ante. We are ready for action and are prepared to do WHATEVER it takes to win my body back. Consider me your prisoner no longer! THIS MEANS WAR!

Today's plan of action: Azithromycin, Omnicef, Flagyl, Lariam
Tomorrow: Flagyl
Saturday: Azithromycin, Omnicef, Flagyl
One week break before the Lyme massacre continues

Let it be known that I am thoroughly excited to continue kicking your ass! Spirochete, cry-me-a-river-o-chete! Cell-wall deficient, smell-wall deficient! Your cysts are too wimpy to even make me pissed! Oh, look at me shaking like a leaf!

Yours-No-Longer,
Alyson "Ass Kickin'" 1durland

What Is That Beautiful House? Where Does That Highway Go?

Last week, I left the tub running for over 20 minutes. I've left the sink running multiple times this week. A hundred times this week I've put water on to make tea and wandered away, suddenly jolted by an angry, screeching tea kettle, and then discovered a few hours later that I had made tea and forgot to drink it. Someone tell me why hasn't anyone invented a screeching tea mug to remind me to drink my tea?!

My neurological symptoms have apparently been cranked up to high. I'm perpetually looking for something (Where's my...uh....thingymabobber?), trying to remember why I walked in a room (I know I came in here for a reason, but what was it?), and/or completely losing my train of thought (I started a blog post? Are you sure? ). All of my stories start with "Did I already tell you...?"

In fact, I'm starting to seriously question whether these two little children following me around calling me mommy are actually my children. Did anyone out there lose a very boisterous and always naked three year old? Or a brainiac eight year old whose real name may or may not be Harry Potter?

The Magical Land of Massages

I must admit, I've been struggling lately, and I have been walking a very fine line between functioning/not functioning. This afternoon, I had a massage. I came to the massage feeling (and I'm sure looking) like the walking dead and carrying with me a feeling that I never knew existed until I had Lyme disease--an exhaustion so gargantuan it felt like if I were to give in to it and rest, it would either swallow me whole, or I would fall into a sleep so deep I would never be able to wake myself up.

It's quite hard to relax when I feel like that but, hey, a massage is a massage and the next thing I noticed, I had let go of my fear of relaxing into the GRANDDADDY of all exhaustion. And. Nothing. Bad. Happened. Nothing swallowed me whole. I didn't fall into a terrifying slumber into which I'm actually typing this post from because I still can't wake up. Lyme exhaustion is a scary thing!

But, back to my massage: I closed my eyes, clicked my heels three times, did some deep breathing and felt myself r-e-l-a-x. I opened my eyes and found myself deep in the woods of a magical place that you can only get to through the hands of a very skilled massage therapist. It was nice there in those woods full of happy things like unicorns and hedgehogs.

Suddenly, I was pulled back to reality by a tiny, scared voice--my voice--talking. Voice, what are you doing?! You're ruining the Magical Land of Massages! But the tiny, scared voice--accompanied by one pitiful, single tear--was so sad and helpless that even I wanted to reach out and hug it. "Do you think I will be sick for the rest of my life?" I heard myself interrupting my massage to ask.

"No. But if you are, I don't think you'll be in pain for the rest of your life."

Unless someone finds a cure for chronic Lyme disease, I won't have an answer to my question, but the answer that my friend gave me in my moment of sadness was enough for me to close my eyes, click my heels three times, and return to the Magical Land of Massages.