Tuesday, February 2, 2016

Since November.....

My last post was November 4, 2015. That is way too long to be gone from something I love so much. You'll need to bear with me on this one though. I'm not sure how much sense I will make. Please try to follow along. Let me explain.

If you have been around these parts for longer than half a second, you have probably heard me talk about my health woes over the past couple of years. I began running about 6 years ago. I fell in love with the sport, with the community. I was HEALTHY for the first time in my life. June 22, 2013 was my last race. Just six weeks prior I had completed my first and only full marathon. The next several months I spiraled fast and furious. My health was fleeting. I suppose all of our health is fleeting.  And despite my best efforts, I could not get it under control. I began seeing countless doctors and specialists to try and figure out what was wrong with me. Some previous spinal issues were the only thing any of us could pinpoint. I don't really need to rehash this story. I've blogged about it before. Many times. Most notably, February 19, 2014, I shared about how I was ready to embrace the pain. I couldn't stay numb. Well....I had no idea what was coming in the next two years.

My last half marathon - June 22, 2013

On November 5th, 2015 (the day after my last blog post) - I had a call from my doctor telling me that recent blood work revealed that I had Lyme Disease. Um. What? I don't recall ever being bitten by a tic in my life. Heck, I don't think I've ever even seen one! But that's what I had. And it explained everything. Back story, my chiropractor for YEARS had been asking me to be tested for Lyme Disease. I would smile and thank him politely and tell him exactly what I just told you - I have never been bit by a tic. In November, he knew I was heading in for some labs as I had taken yet another turn for the worse. He strongly encouraged me to request a test for Lyme (which somehow had NEVER been run in my many years of trying to navigate my random health issues), and to just get him off my back - I agreed. I'm so thankful I did. But to think of the results?? I feel so invaded! Stupid tic.

So Lyme Disease. What the heck is it? (Don't worry, this entire post isn't really about Lyme Disease...hang on...) Well, it mimics everything apparently. And from the list below, my Doctors had looked at everything (and so much more), except ALS. I was a mystery. A frustrated mystery.

Now that I know what I'm dealing with, the learning curve has been steep. I've taken in information everyday since November 5th about what this is, how it is effecting me and how to #killallthelyme. It honestly did my mind and heart so much good to just KNOW what I was dealing with. I've always felt like I could deal with anything that comes at me as long as I know what it is. Me and the unknown are not friends.

My Doctor immediately started me on medicine to begin to eradicate the bacteria. I also was able to get in to a Lyme Specialist about a month after my diagnosis. That's when the real fun started. See, during treatment for something like Lyme disease, a little phenomenon known as The Herxheimer Reaction sets in. The first few months of treatment have been Brutal (with a capital B). Unless you are a nerd and actually follow that link to read about what a Herxheimer Reaction is (Herxing for short) - let me just sum it up. Basically, every symptom I've ever had for the past 12 years (which is when I began having symptoms of this awful disease) have all returned all at once - and on steroids.

So what is Lyme TO ME? Well, over the past 12 years it has been a lot of things. But in the past three months....I just want to tell you a bit about where I've been, and why I haven't been here. Like I said, it's been every symptom I've ever had on steroids. I have had days on end where I can't turn my head. Heal pain that is so intense that I stand up and fall back down. Numbness and tingling down the entire left side of my body - making it difficult to sleep, hold things, walk for extended amounts of time, and type. Joint pain that makes me assume I'm 80. Muscle pain - scratch that, bone pain. Fatigue that fully warrants narcolepsy. (For real. One minute I'm standing, the next I better be near the couch or my bed or it will get ugly fast.) Simple tasks like showering and getting dressed in the morning leave me feeling more sore than running that marathon. I have tremors/spasms in my left arm that freak my kids out. Sometimes I like to "tremor" near the back of their head just for kicks. I have lymph nodes in my neck that look like a giant goiter. Thank God for #sweaterweather. And the one that has probably been the hardest for me to handle - cognitive. Several months before my diagnosis, I began telling Aaron I was worried I had early onset Alzheimer's. I would go to the grocery store and walk up and down every isle not remembering why I was there. I would leave with milk because we always need milk. But that was never really what I went for. There have been moments I couldn't remember how to get home. Thankfully I have a teen driver who is almost always with me. I will be talking and stop mid sentence not even remembering we were..... sorry...what are we talking about? I can't find words, and if I do find them, I can't get them out. Reading is VERY difficult, because the words form a big black blob instead of smooth sentences. It takes me 20 minutes to read and comprehend 5 sentences. I can barely get my thoughts out in a status update on Facebook. What I once would pop out in half a second now takes me 15 minutes of typing and re-reading to see if it makes sense. Most of the time I think it doesn't. And as for writing....something I LOVE to do...well, if you are still reading - you are understanding why I haven't been writing. It has taken me almost two hours to get this all out. I hate this.

So that's all. I don't want to talk anymore what Lyme is. I want to tell you my heart.  I shared this with some friends today....and because my brain can't do it again, I will just cut and paste....

I've generally managed my Dx well...until yesterday. I cried most of the day. 2.5 years ago I had enjoyed 3 years of being the HEALTHIEST I've ever been in my life. (Which is a huge deal for this girl who battled an eating disorder her entire life.) I was truly, genuinely healthy - physically, mentally and emotionally. I was running half marathons regularly, and pushed for a full Marathon. I was at a healthy weight. I had a thriving health business. Then within 3 months post marathon, I spiraled fast and furious. The next 2 years were spent trying to figure out what was wrong. Now I know. I just don't get how Lyme (which I've probably had for over 12 years) attacked so fast and when I was at my healthiest. Was it the stress of the marathon that brought it on? Stress of life? I don't know. But I miss my healthy self. I miss running. I miss being able to take a shower and get dressed in the morning without needing to take a 30 min rest break. I can't wait to return! As for today, I'm back to fighting. #lymewarrior 

As much as I have been thankful for a diagnosis, this has all been a little surreal. The emotional roller coaster over the past few years (and even still currently with some remaining strings waiting to be tied) has been more than I thought I could handle. But here I am. Still standing. I honestly feel like I'm just in survival mode. I have a family to take care of, a church to serve, a business to run....and at the end of each day - sleep welcomes me. All 10 hours of it. I don't understand what God has for me in this - and I don't believe I may ever know. But it is certainly forcing me to decide if I trust him with my life. He knew these days were coming. I'd be lying if I said I was fully okay with it. Like Jacob, I've wrestled. I'm still wrestling. And my limp is severe. And I know we aren't done yet. 

Here's the raw truth. I hate that I was at such a good place in my life (mentally, physically, etc) and it's gone now. I hate that I can't run, or bike, or walk the dogs, or walk longer than 10 minutes period. I hate that I can't write. I hate that I can't read. I hate that I can't take care of my family. I hate that I have to endure this (and that those around me have to endure me!). I know the right response is that in this life I will have trouble, and Jesus is no stranger to pain, and why should these things NOT happen to me....and I try to tell myself those things regularly. But I gotta be honest. Everyday for the past three months, it has not come easy to believe these things from the core of my being. I'm sad and angry. Come Lord Jesus, come. But equally at the core of my being I can fully say that I believe He loves me. And that matters most. 

I realize this was the most lame blog post I have ever written. And it's not entirely important. And why are you still reading? But I had to start somewhere, so this seemed logical. I'm going to try to write more frequently. I fear it will be a bunch of nonsense as this post has been - but writing brings me life and joy.  See you soon...  

1 comment:

Dad said...

Jody, thanks for writing this post. I am understanding more of what you are going through, more so since we were there with you at Christmas time. I am glad that the Lord provided you with a loving family (Aaron, Provi, Sammy, Eden, Kira, and Malachi) and a loving mom that understands you, probably more than I do. But that does not mean I love you any less. I am praying that the Lord will be merciful and provide you a miraculous healing from all your ills and gracious in providing you with many good days, weeks, months, and years to come. And, yes--- I agree with your statement "Come Lord Jesus" Love, Dad