Sunday, October 31, 2010

The Carousel Disease

If you've ever spent any time around someone with Lyme Disease, you are probably pretty baffled. How is it that one minute they can be too sick to walk, and the next minute they are running around like a wild person, full of energy? One minute, they need to be carried up the steps, and the next minute, they are bouncing down the steps to answer the door. One day they can make a four-course meal, and the next day, they walk away from the stove until the smoke alarm goes off, reminding them that they were actually in the middle of making dinner!

Migrating symptoms are a hallmark of Lyme Disease. Sometimes I refer to it as the Carousel Disease, because my days are constantly up and down. No one has been able to explain to me what causes these ever-changing symptoms, but it is one of the most frustrating parts of the disease. People who don't understand Lyme Disease assume you are faking your illness. It's very hard for people to understand why I have days when I can actually ride a horse, and other days when I have to be carried from my bed to the bathroom.

You may look at me, and I may not look the slightest bit sick to you. But inside my body, there is so much going on that you can't see! So for those of you who are ready, hop on the carousel of Lyme Disease for a spin with me!

Imagine someone has strapped lead weights on your legs. Now your legs are heavy, achy, and hard to move. Getting around is quite a chore, but you can do it!

Now, imagine your brain is filled with cotton (hard to picture, but bear with me!). The simplest of decisions are now a major struggle for you, and you can't remember what you were saying or thinking. You can no longer answer a simple question like "should I have a snack?" You can no longer figure out simple math questions like 12-5. You constantly forget to eat your snack, and drink the tea you just made. You forget simple words. You haven't the faintest idea of what you did this morning, let alone yesterday!

Now picture someone taking a drill and boring into your hips, causing a deep, slow ache. It hurts when you walk, it hurts when you sit, it hurts when you lay down. Your fingers feel like someone is stabbing them with needles. Your knees feel like someone is banging on them with a hammer.

Mentally, you are very agitated, like someone is scraping their fingers down a chalkboard close to your ears. You head is throbbing, you are tense, and you feel as though you are ready to blow at any moment!

And just as suddenly as you hopped on the carousel, you hop off. The ride is over. Your head stopped throbbing. Your hips are only a dull ache now, not nearly as intense. You can walk easier now, but all that riding on the carousel has left you a little dizzy. Whoever was scraping their fingers down the chalkboard has stopped, and now you're only mildly agitated. You don't feel like there are lead weights on your legs anymore, but you are left with a flu-like ache in your body. You suddenly remember a million things that you were supposed to do. Like a kitten running through the house, you dart around trying to make up for lost time, all the while wondering when the carousel ride is going to start back up. It might be soon. It might not be until tomorrow. You don't know what the ride will be like next time or how long it will last. But for now, you are happy that your quarter ran out, and the ride is over.

Friday, October 29, 2010

Up To Speed

I got my official Lyme Disease diagnosis and began treatment in late July of this year. Currently though, I'm off treatment, because my body is too sick to handle the unkind effects of being slammed by high doses of antibiotics.

All that starting and stopping the medicines (three times to be exact) means the Lyme is having a heyday in my body. This is the sickest I've been yet and I'm unable to stray far from my bed. I haven't been able to leave the house this week except to go to the doctor's office.

The goal for now is to build my body back up with supplements until I am strong enough to try again with the antibiotics.

Recovery from Lyme Disease is painfully slow and, well, just PAINFUL! I'm doing my best to remain optimistic, though. My body screams in agony when I go far from my bed. So for now, I take joy in the fact that my daily to-do list looks like this: curl up under piles of blankets, read my favorite books, watch cheesy movies, and take three baths a day. If I think about it like that, it's not so bad!

My Lyme Disease Story

My journey with Lyme Disease

In October of 2009, I started developing mysterious symptoms. First came odd visual problems and trouble reading. It felt like there was constantly a fog on my glasses that I couldn't seem to wipe off. This persisted off and on for several months and I began getting headaches.

In late January of this year, I developed a sinus infection that wouldn't go away. I went to the doctor and got put on antibiotics. That's when all hell broke loose!

I became totally bedridden for months. The doctor said I had mono, but it quickly became apparent to me that something else was going on. I developed HORRIBLE burning and stabbing muscle pain that started in my ankles and over the weeks worked its way up my legs (there are just no words to describe the amount of pain I was in at that point!!). I started getting really nervous, thinking that whatever it was, was making its way up my body and about to attack my organs next! I was having panic attacks left and right. My pain was so bad, I literally wanted to die.

My doctor gave me Darvocet, but it didn't touch the amount of pain I was in. I called his office on numerous occasions crying and begging for something to help me with my pain. I have an INCREDIBLY high tolerance to pain, but I was crawling across the ceiling in agony! He said to try Aleve for the pain. Darvocet didn't touch my pain, and this doctor thought Aleve would help?!

He did do something that helped, though. He put me on two antidepressants, Zoloft and Trazadone. He said that Trazadone is used for chronic pain, and when used together with Zoloft, they start working in a week or two (instead of a month or two). It did help, and since I've been on it, I no longer get the terrible shooting pains up and down my legs that were unbearable.

I kept developing more and more symptoms, but my tests kept coming back normal. I switched doctors so many times, desperate for help, but no one seemed to believe that there was anything wrong. I kept hearing that it was all in my head and that I should see a psychiatrist. I couldn't take care of my kids anymore. I could barely walk and many times I had to be carried up the steps. I developed joint pain and arthritis in my hands. And then there was the pain. Undescribable pain!

At one point, I was sent to a rheumatologist, who upon examining my fingers which were starting to curve and bend from arthritis and were too swollen for me to wear my wedding ring told me, "Sometimes when we don't feel well, we notice things about our bodies that we wouldn't normally notice." Was this person REALLY implying that I was making up joint pain and swelling?! She said all my blood work was normal and there was nothing wrong with me and our appointment was done.

I knew someone with Lyme Disease, and some of her symptoms were very similar to mine, so I started researching it and I realized that I had an incredible number of symptoms. I found a great doctor, known among Lyme patients as an LLMD (Lyme literate doctor). My test came back highly positive for Lyme Disease.

I've had symptoms of Lyme for years, and misdiagnosis after misdiagnosis. Lyme is so hard to diagnose because the symptoms are ever-changing. What hurts one day doesn't necessarily hurt the next day. Also, no two cases of Lyme Disease are the same. You can get any and all combination of symptoms.

I started long-term antibiotic treatment in August. I don't know how long it will take before I am well again. For some people, particularly those who've been shuffled from doctor to doctor before getting the correct diagnosis, it can take many years. I have good days and bad days. I am very limited in what I can do, and I am in a lot of pain on a daily basis.

I don't want people to think I'm writing this for sympathy or pity. I write it because people don't know the facts about Lyme Disease. Did you know that fewer than 50% of people ever recall a tick bite? Fewer than 50% get the telltale bull's-eye rash associated with Lyme Disease. Did you know that a tick can be the size of the period at the end of this sentence? If you went to your doctor and asked to be tested for Lyme Disease, most likely you would be told that Lyme Disease doesn't exist here. I am living proof that this isn't true!

I hope my story inspires you to take the time to learn the facts about Lyme Disease. It is supposedly "rare" in my area. But I'll let you in on a secret: I'm not the only one here with Lyme Disease! Not even close. There are lots of us, here, there, and everywhere!

For a list of symptoms, please visit this site: