Tuesday, November 29, 2011

Oops, I Forgot

Last night, I forgot to take my shot out of the fridge. I'm supposed to take it out an hour before it's time for my injections and--despite the not-so-great track record in the ol' memory department--amazingly, this was the first time I've forgotten. Hey, one out of 18 isn't bad!

The problem was that my friend who gives me the shots had just been picked straight up from a 10 hour shift at work, and even though he was being a good sport, no one had to tell me that waiting an hour for a shot to warm up wasn't exactly high on his list of fun ways to spend the evening (not that giving a shot is good fun, either!).

So, we took the shot out and stuck it under the lamp. We tried to speed up time, but that only works on tv. After about 20 minutes, it felt room-temperature-ish, so we decided that was good enough.

Time does strange things when you have to sit still with a giant needle in your butt. I normally don't pay attention to the clock, because no matter how I think about it, there's still a shot in my ass for several minutes! Normally it takes about six to eight minutes because the medicine is very, very thick. However, this time, I noticed that we were almost through an entire episode of The Wonder Years on Netflix. Shit! 

My friend seemed a bit worried and asked me if I was relaxed. Sure, I was as relaxed as could be given the situation, but, truth be told, I wasn't sure what was going to happen to Kevin and Winnie. I mean, after all, he caught her kissing the lifeguard! Oh, yeah--you're talking about the shot that won't end...

Why do you ask, pal? Is my butt turning green and purple? Are rabbits jumping out of my ass? Should I be concerned? Am I dying?! Yes, I must be dying! Oh, NO!

Okay, so you probably figured out that I didn't die. Actually, nothing bad happened at all except for the fact that the medicine apparently had a cold spot and it took 20 minutes to get all of the medicine to come out. When it did finally start coming out, most of it came out in one big blob. It really didn't hurt any more or less than any of the other shots, but I figure it can't be a good thing to have a needle in your butt for so long!

In what was likely no coincidence, I spent most of today Herxing to the moon and back. I laid in bed chanting, "I will never forget to take my shot out of the fridge again; I will never forget to take my shot out of the fridge again; I will never...."

Lesson learned. The hard way.

Monday, November 28, 2011

It Will Dissolve You!

A few nights ago, my husband had a dream that we were at Trader Joe's and I was completely insistent on buying a brand new product called X-treme Lime Treatment. This was the treatment that was going to cure me; I was sure of it!

My husband was trying desperately to convince me not to buy the lime treatment, which--as the name suggested--was meant to dissolve lime in pipes, but all I heard was someone standing in my way of being cured. He explained to me that I was spelling it wrong*, after all, l-i-m-e is not the same as L-Y-M-E.

He begged. He pleaded. But I would not listen! Finally, in a panic, he started shouting at me in the middle of the store, "Don't you understand?! Extreme Lime Treatment will dissolve you! IT WILL DISSOLVE YOU!"

When my husband told me about his dream, we both had a pretty good laugh, especially at that last part, "It will dissolve you!" I thought it was pretty hysterical. Just for the record, my current Lyme treatment is boringly conventional and I have no intentions of downing any pipe cleaners. What about you?

*A very common Lyme symptom is to stumble over words that sound the same but are spelled differently: their, there, they're; lime, Lyme; our, are., breaks, brakes, etc.; quite an embarrassing symptom if you were previously a stickler for good grammar!

Sunday, November 27, 2011

Is it any Wonder?

Is it any wonder that people think Lyme disease is all in our heads? After all, life with Lyme disease means...

riding on a horse one day;

riding in a wheelchair the next.

If that's not confusing enough, this is what I look like when I'm in excruciating pain:
(hint: I'm the one on the right)

On my good days, I don't look sick. On my bad days--unless I'm in a wheelchair--I still don't look sick. So how will the world know how badly a cure is needed for this painful and debilitating disease? That question nags at me day and night. I don't have the answer and I really wish I did.

I am only one person in this big, big world trying to spread awareness for chronic Lyme disease. Sometimes it feels like a lost cause, but I am trying and that's as good as I can do. I am reminded of this beautiful quote by Helen Keller, "I am only one, but I am still one. I cannot do everything, but still, I can do something; and because I cannot do everything, I will not refuse to do something I can do."

Thursday, November 24, 2011

The Ugly Gift

Today, on this day of giving thanks, I can't help but marvel at something that I am grateful for: I am genuinely thankful for my Lyme disease, despite the hell it has put me through. Now you may be wondering how anyone could be thankful for a crippling, painful disease and before you conclude that I have completely fallen off of my rocker, let me explain myself.

Before I had THE BIG CRASH--the moment that I went from functioning to bed bound--I burned through each day going a mile a minute. I was stressed, I was crazed, I felt like crap all the time and my days blurred together meaninglessly. Sure, there were good times; some really good times, even. But, inside, I was miserable. Maybe it was all that unchecked sickness building up in my body, but mostly, it had to do with my lifestyle--with a great big emphasis on a very bad attitude (guilty as charged!).

When you come to that part of your life that everyone must come to at some point--the part where life no longer hands you lemons, but rather, pelts you with them--most of us switch into survival mode. You do what you have to do no matter what it takes to make it through each minute of every hour of every day, never mind trying to make lemonade with those lemons!

When I first got sick, I went into survival mode and guess what I did? I whined, I cried; I was bitter. I took it out on those around me. I looked for every possible way out of my situation that I could possibly come up with, but there was none. The only way out of Lyme disease was through.

One day I realized I wasn't actually running away from Lyme disease; I was running away from myself. Anything to avoid facing my demons--me. That big, fat, bad attitude was staring me right back in the face. We are either our own worst enemy or our own best friend, but the choice is ours.

Not one single part of this journey with Lyme disease has been easy. In fact, it has been the hardest thing I've ever gone through in my life. But it has also been the most life changing thing I've ever been through. Lyme disease forced me to look long and hard at myself and who I truly am. It pushed me out of my comfort zone--and you'd better believe I fought that kicking and screaming--but it caused a beautiful metamorphosis.

Because of Lyme disease, I am thankful not only on Thanksgiving, but on every single day of the year. I am thankful for every moment of my life, even the ugly, painful moments. I have learned and am learning still to live in the moment and enjoy the present--it's all we have! I am thankful for the gifts that were given to me wrapped up in the ugliest packaging ever imaginable--Lyme disease!

I'm not through my journey yet. In fact, I've just begun. But I've got a much, much better attitude and I've learned how to be a better person to myself and now I am ready to actually battle Lyme disease instead of battling myself.
Thanksgiving 2009, a few short months before my big Lyme crash

Saturday, November 19, 2011

All in your Head

One of the hardest parts of having Lyme disease is that every single aspect of my disease is completely naked to the visible eye. It's surreal that there are no outward signs of the pain going on behind the scenes inside my body. If I don't tell someone I am sick, they have no idea. Even my closest friends have difficulty gauging how I'm feeling unless I verbalize it.

One thing that always throws me off is the comment, "You look like you're feeling great today!" While it's a blessing that I don't usually look as badly as I feel, it's incredibly jarring that my physical appearance can be so utterly incongruent with my pain levels.
This is what Lyme disease looks like. You cannot imagine the pain I was in when this photo was taken...

Inside my body on any given day, I'm battling dozens of symptoms that no one can see. Yet, I'm expected to function like a "normal" person, because I still look like a normal person (No comments from my brother here!). When I first came to my Lyme doctor, I had over 60 symptoms--and not a single one visible to anyone else! With treatment, we've whittled that symptom list down to a much smaller number of symptoms, but like I said, there are still dozens.

With so much going on in my body and in my life that no one can see but me, I feel so torn--after all, it's really nobody's business but my own if I'm sick, so why the need for people to know and understand Lyme disease? Simply put, doctor after doctor discredited my Lyme disease as being all in my head because I didn't/don't "look" sick. I don't want others going through the hell that I went through to get diagnosed, but unfortunately that's exactly what is happening all across the country.

The fact that in every single state in the United States, you can drag around a list of over 60 symptoms of an endemic disease and be told over and over that there is nothing wrong with you "because you don't look sick" pushes me to keep telling my story--the story of Lyme disease--until it is heard.

Just out of curiosity--Lyme friends, how many of you were told by doctors that "it's all in your head?"

Article About Lyme Disease

This is one of the best articles I've read about how dangerously misdiagnosed Lyme disease is. According to this article, the average Lyme patient sees seven doctors before getting properly diagnosed, although I'd venture to say that that is an extremely conservative number. By that point, the disease has already spread throughout the entire body, turning it into a profoundly difficult to treat disease, as evidenced in this heart-wrenching story about Billy Wallace.  
The article states that, "Lyme disease cases increased from about 17,700 in 2000 to nearly 30,000 by 2009, according to the CDC."  The CDC has stated on their website that the actual number of cases of Lyme disease may be up to ten times higher. That would mean the number of cases increased from 177,000 in 2000 to nearly 300,000 by 2009. Don't forget that (by a very conservative estimate) only one in seven doctors is able to properly diagnose Lyme disease.
How many more Billy Wallaces will it take to awaken the medical field of this crisis? Because of the lack of knowledge about Lyme disease, Billy Wallace and hundreds of thousands of others, including me, will be fighting this unfathomably disabling disease for the rest of our lives.

Sunday, November 13, 2011

Does Debbie Downer Try To Write Your Blog?

Often, I struggle to find the right words for what I want to say without coming across as writing the most depressing tangle of words imaginable. Lyme disease is not an easy topic to write about without bringing the room down! But, since my biggest hope for my blog is to help others understand what it is like living with chronic Lyme disease, I know I can never achieve that by writing from the perspective of a Debbie Downer, so I try not to let her write my blog posts!

Writing about a difficult subject like Lyme disease is no easy feat. Think of it as being a master chef. For those really tough blog posts that you just can't seem to publish, here's my recipe for success: toss in a gallon of hope, two teaspoons of pain, four heaping cups of gratitude, a sprinkle of tears and two or more cups of laughter to sweeten things up. Add in a few dozen "followers" and cook at 350 degrees until golden brown or until people start "liking" your blog posts.

If you add in too much "pain" and not enough "hope" or "gratitude," your blog post might come out a little too dry and/or burn around the edges. Don't give up; next time just add in a little extra laughter to sweeten it up. Now, let's get cooking and see if this "recipe" works!

(HOPE) On 11-11-11, interestingly enough, I had Bicillin shot number 11, which I took as a sign of good luck! I also began an herbal treatment called the Cowden Support Program for my Lyme disease. Today I am on day three of the six month Cowden Protocol. (LAUGHTER) Three days down, only 187 more to go!

(PAIN) My horse had to have her feet trimmed yesterday and I literally felt like the walking dead. It took every ounce of strength in my body to get to and through that appointment. I was so sick, I didn't even have the energy to hug my beloved horse--who was so excited to see me. In my world, there is no such thing as too exhausted to hug a horse. (HOPE) Yesterday was a tough day, but I know without a doubt that I will beat Lyme disease and one day I will tolt off triumphantly into the sunset with my little pony!

(GRATITUDE) After I got back from the barn, I had a two hour massage (Lyme disease does have a few perks!), which was completely heavenly. It helped pull me out of my funk for a few hours and gave my mind and body temporary shelter from the storm.

(PAIN) I'm pretty sure it's the Bicillin that's kicking my butt. The last few shots have made me feel progressively worse and my Herxing symptoms are piling up. The first three days of the Cowden Protocol are pretty gentle and are intended to help your body detox. Tomorrow--day four of the new protocol--I start five new herbs and also have to have shot number 12 in the evening (LAUGHTER)(er, in the butt, if you'd like to be more technical).

(LAUGHTER) Things are probably going to be pretty intense tomorrow and I told my friend that I am going to wear my Badass Lyme Warrior Woman outfit, complete with convenient Bicillin butt flaps!

Tuesday, November 8, 2011

A Girl and a Horse

I had a very rare afternoon to myself today without my kids, thanks to my mother-in-law, and I was feeling pretty well, so I hopped in the car and went to the barn. It was a gorgeous day out and, as always, my pretty pony was waiting for me.
"Hi, Mama!"

There is no greater joy on this earth than being on top of my horse. I have no pain when I am sitting on her and I believe with all my heart that she understands what a gift she is giving me when I ride her. Mostly, though I don't have enough energy to ride, so we just "park" and I sit on her back and dream about riding while she eats her hay.

When I started Bicillin injections, my doctor told me I'd most likely be too sore to ride my horse. When I told my mom that, she said, "I know you and you'll do it anyway!" What can I say, my mom knows me well. Last week, I went to the barn and tried to climb up on my horse, and ended up hurting myself. I figured it was time to put away my cowgirl boots until I was done with the shots.

But if you know me, you know that I am stubborn. Very stubborn. I took my pony into the arena today and we walked around and around while I contemplated whether or not I should get up on her again. She seemed to say to me, "Just get on already, lady!" So I did. We rode for about 10 minutes--bareback, bridleless, and without reins. And it was amazing.

I'm exhausted after my 10 minutes of being a cowgirl and I'm resting now, but it was worth every bit of the pain that it will cause me for the next several days. Knowing that my dream horse is waiting for me at the barn gives me so much strength to beat the snot out of this disease.

Saturday, November 5, 2011

Erythema Migrans Rash

Last night, as I was peeling off the Tic-Tac-Toe board of band-aids from my butt so that I could apply medicine to my latest Bicillin injection site, I noticed something peculiar on the "good" side (the side currently "on break" from injections). The "good side," in this particular case being the left side, had five circles, each one approximately the size of a quarter.

I figured it was just a reaction to the circle band-aids that I currently had on. Then, I realized that that particular side had only three injection sites, which didn't explain why there were five circles. Also, I could see the three unhealed marks left from each shot, which didn't match up with the circles.

That left me with two other ideas: either a late drug reaction to the Bicillin, or--and this is what I was hoping for--the tell-tale Lyme rash (called an erythema migrans rash or EM for short), which has been known to "magically" appear during antibiotic treatment.

I gave my doctor a call, so that I could let her know what was going on. She had me come in and show her the rash so that she could make sure that it wasn't a reaction to the Bicillin (which is really great because I'm hoping to never, ever have to use the Epi-Pen that I'm supposed to keep handy during shots--you know, just in case).

She said what I was hoping she would: not a reaction to the Bicillin, but in fact, the EM rash--which proves evidence of disseminated borrelia. In non-doctor-speak, what that means is the rash is clear evidence that the Lyme bacteria has spread throughout my body--chronic Lyme disease/late-stage Lyme disease/advanced Lyme disease, whatever name you'd like to call it (I will refrain from using the colorful name my friend came up with for it today).

So, in my excitement, I decided to do a little research about the EM rash appearing long after the actual tick bite and here's what I found:
-Erythema migrans itself may appear at a site far from the original bite as untreated Lyme disease bacterial infection spreads through the skin. 
-Multiple painless EM rashes may occur, indicating disseminated infection.
-A little recognized fact about the EM rash is that it can recur, usually in the original site, with or without antibiotic therapy. We estimate that between 5-10% of patients demonstrate this phenomenon during their illness. Other patients remark that they have migratory rashes of moderate duration from time to time that remain unexplained.

There are a lot of misconceptions about the Lyme disease rash. Here is a great site with lots of pictures of different Lyme rashes.

I can't believe I am publishing this, but I have been begged to, so enjoy!

Multiple EM rashes around Bicillin injection sites

Thursday, November 3, 2011

Time for Change

Imagine finding out you have a rare form of cancer. Now imagine finding out that if your doctor would have diagnosed it years before when you first got sick, you would be cured. Imagine knowing that now you may never get better.

Imagine finding out your insurance won't cover your cancer because they don't know how long you'll need treatment since--because your doctor didn't diagnose you in time--the cancer has spread throughout your entire body. Imagine that you now have to sell not only your beloved business, but also your house to pay for treatments. Imagine as an adult having to move back in with family since you have now found yourself homeless.

When you replace the word "cancer" with "chronic Lyme disease," suddenly people aren't listening anymore. I wish it wasn't, but the story above is a true story and it's happening to a wonderful friend of mine. I wish I could say that hers is a rare story, but the reality is that a huge percentage of people with Lyme lose their homes, their jobs and are forced to file for bankruptcy to pay for treatment--which is very rarely covered by insurance companies.

My friend confided that she not only has to sign up for food stamps, but she has to sign up her daughter for the Angel Tree because she can't pay for Christmas presents this year. What kills me is if this was a story about cancer, it would spread across the internet so fast, her little girl would have a pony in the front yard of their new house for Christmas this year. People would help.

Can you imagine, really imagine being in my friend's shoes? There will be no change until our stories are not only told, but truly heard. The medical system has failed chronic Lyme disease, but we are not giving up. It is time to join our voices and demand a change.

Wednesday, November 2, 2011

Right Around the Bend

In stark contrast to the pain radiating through the area, I have six festive, colorful band-aids decorating my butt. Tonight, I will have seven. Why? Because three days a week, my friend comes over and gives me an injection--the needle, easily the size of a Buick--of Bicillin into my heiney. I am tempted to post a picture of my decked-out rear, but I will spare you. (Sorry, Kathy T.)

The shots last about six minutes; sometimes longer. The Bicillin is very, very thick and the slower the injection, the less painful they are (or so the theory goes). The reason my butt is still covered in band-aids is to mark the site of each injection. Even when the spots don't feel painful anymore, it takes several weeks for the tissue to heal. Accidentally going into the same spot is something I've been warned extensively about.

I am constantly replacing the band-aids as they fall off. Like a trail of bread crumbs, there's a trail of fallen-off band-aids behind me--giving away the identity of a woman who is not supposed to eat sugar, holed up in a dark corner clutching a bag of her children's Halloween candy.

My energy levels have been quite deceptive since starting the Bicillin and I've gotten myself into trouble on more than a few occasions. I've been trying to stick close to home and only go out for short trips. I have been hovering in some kind of strange in-between world. Not quite bad enough to be housebound, but not quite well enough to classify myself as an active member of the human race again.

My mind flashes on an image that is very dear to me: The sight of an old friend--who has since drifted out of my life--bursting triumphantly out of the woods near the finish line of a long and painful marathon. I ran the last leg of the journey with him to the finish line, something that he said touched him very deeply, and my way of saying that I was more than impressed with his tenacious spirit.

Like my dearly missed friend, I feel that I, too, am almost out of the woods.