Tuesday, January 13, 2009

Living the Lyme Life

This is a long post. Sorry in advance.

I could feel it on the inside. Every muscle and bone ached ... I couldn't see straight. I was dizzy. I was overall miserable. It was at that moment that I stopped living a normal life and began living the Lyme Life. I was sick all night and slept just a little. I woke up, I went to work, I came home and I ate. Then I went to bed only to be disrupted by a night of vomiting and diarrhea. Then the next day looked exactly the same. It wasn't pretty, but it was my life.

Every moment of my day was filled with vitamins and antibiotics. If someone wanted to invite me for dinner, I had to insure I had my little burgundy lunch bag with me. It did not have food in it. It had my antibiotics in them and other vitamins that I may need IF lunch/dinner ran late. I stopped exercising at the gym because it was too inconvenient and painful. My brain wasn't working well enough to do the Step Aerobics that I just loved and my body was failing me. Also it was too difficult to stop half way through a wonderful work-out to take my antibiotics.

I fell into the Lyme rabbit hole. It was a different world than I was accustomed. If I had to make a guess I would assume that most people couldn't even begin to understand my body's own personal prison. Every person with Lyme Disease is affected differently and I can not even begin to understand my friend's personal prison. Their prison is different than my prison.

After a year of treatment, my prison was becoming more and more restricting. The restrictions of the medications themselves were suffocating. Take this two hours away from this and you have to eat with this one, but you can not eat with that one and the one you can eat with you can take with this other one, but only if you don't eat dairy! You can only have dairy two hours away from another drug and make sure you don't lie down at least 2 hours after you take this one and whatever you do ... do not go out in the sun or you'll get sunburned! This one will make you vomit and this one will give you diarrhea and be careful with this one because it can cause severe dizziness, tendon ruptures and embarrassing flatulence!

Before my diagnosis, I thought knowing what I have is better than not knowing what I have. But I was beginning to think after over a year of treatment .... I'd rather be dead than live in this personal prison. My last straw was on a day in which I passed out at work and was hallucinating streaks of pastel colors. Finally in May of 2008, I was offered a key to get out of this imprisonment. I was offered the AMT treatment that would leave me not taking a single antibiotic. I would be able to eat dairy whenever I pleased and would be able to nap without worrying about acid reflux and go outside (should I really want ... and at this point can you blame me for not wanting to be out and about with the ticks at large?).

From May to July, I spent in my own personal IV prison. It would take 3 or 4 jabs to get an IV started. I would drink 24 or more ounces of water & use a heating pad for them to get an IV started. Then finally on July 17, 2008, I was given a reprieve of needle sticks. My PICC line was inserted. It gave me a new set of problems, but these were much better than the alternatives.

Now in January, I still have the PICC and am working on Living the Life instead of Living the Lyme Life. Most of the time, I forget I even have the IV in my arm. In fact, I am forgetting so much that I have forgotten on several occasions to put in the Heparin in my line on each night and almost got in the shower the other night without my picc line cover!

I am taking my life back. I have started exercising again. For Christmas, I was able to locate my husband the Wii. He has been wanting it for a while so that we could buy a Wii Fit. I was hesitant because I figured that the Wii is just a "fad." Well, I purchased it for him and we have really enjoyed it. My parents located and purchased a Wii Fit for our birthday. Both of our birthdays are in January. We began working out on December 30th and I have only missed two days. I have worked out at least 30 minutes every day. Some days I have even worked out for 90 minutes.

It's amazing to be living life again after living so long in the Lyme life! There is hope for all of you living the Lyme Life! Yes I am still in treatment and I am not at 100 percent, but my days are so much better than they were a year ago ... even 6 months ago. Maybe one of these days I won't even consider myself a Lyme patient, but a Lyme Conqueror.


Renee said...

This is really a good post! I find I am getting to your place of frustration after 18 mo on oral meds....I do have a question...
Can you tell me what AMT stands for??? I can't find a think online...

Jennifer said...

AMT stands for Antimicrobial Therapy (or Treatment).

It is only done by 3 or 4 physicians in the country. I am fortunate enough to have one of them!

owlnose said...

Interesting...so this AMT means having a constant IV of...what?

Jennifer said...

Owlnose: AMT is an acronym for AntiMicrobial Therapy. I actually am not having a constant IV of anything. I do have a picc, but it's not being used all the time.

It's a combination of different things that kill bacteria, viruses, parasites & yeast

This is a day in the life of my treamtent: