Tuesday, December 20, 2016

Who Do You Know That Knows Someone?

I need a doctor. A Lyme literate (LLMD) one to be exact, but I will settle for an IDS in Georgia -- the kind that doesn't get hung up on the controversy between "post treatment lyme" and "chronic lyme". I don't need just any doctor, but one that is up for a challenge of confusing and conflicting test results. One that is accepting new patients and is in network with BCBS PPO. One that listens intently and doesn't believe in diagnosis by exclusion. Someone that understands the repercussions and benefits of every single prescription and supplement that I ingest -- individually and when combined with each other. Someone that is willing to listen to my story and hear all of the facts from beginning to end with the goal of improving my quality of life --- I need a medical professional to tell me what I can do to treat the root of the problem(s) that are causing my numerous symptoms -- not just how to tolerate and manage the symptoms themselves. Help -- who do you know that knows someone?

In the past few months, I have met with 4 specialists (2 internists, a rheumatologist, a neurologist and a team of 3 Infecteous Disease Specialists) -- and they have all admitted that they have done all that they can do at this point, they wish me the best of luck, my condition is "outside of their area of expertise", come back in 3 months -- and in the meantime see one of the other doctors (that is referring me right back to them) or go to the ER.

Comment below if you know anyone that can help me!

Tuesday, December 13, 2016

The latest (but not so greatest) update.

I know I haven't posted in quiet some time, but to be honest I knew that between a full time job and living in chronic pain that I would have very little time to blog -- especially about a disease I am still avidly researching myself! Anywho -- I have had several people reach out and ask for an update, so I figured a short post would be the easiest way to get all of my prayer warriors and support system on the same page.

I reacted well to my first round of treatment which was 21 days of oral doxycyclin. It has been just over 2 months since I finished that round and some of my symptoms have resurfaced. This was to be expected given the fact that I was likely infected for over 2 years before ever receiving a diagnosis or treatment -- but it is still very disheartening! Some symptoms are more manageable than others, and my new clean diet seems to really be making a difference in both severity and frequency of discomfort. Once I receive the results from my lumbar puncture that is scheduled later this week, then I will know my options for treatment moving forward. Meanwhile, I take it day by day -- or hour by hour -- and just "keep on keepin' on". (That's what my sweet Papa told me to do!)

Shane is still recovering from rotator cuff surgery, so we are both doing our best to take care of each other. As you can imagine, this storm isn't pretty. It is scary and painful and concerning -- but as Shane and I learn to dance in the rain I am so thankful for all of the love and support we have received. You wouldn't believe the number of people that went above and beyond to send us cards and care packages and meals or the people that have come to visit and help with chores and errands. We are so humbled and gracious!

Wednesday, October 19, 2016

Brain Fog In 500 Words

Image result for brain fog lyme

At some point, we have all walked into a room and completely forgot what the heck we came here for? It happens to the best of us! We have absentmindedly done something that made us feel disoriented – forgetting someone’s name for example. Crap – how can I not think of their name? I’ve known them for years. Then, hours or even days later, it comes to you seemingly out of the blue.

Friday, October 14, 2016

Finding Hope

Sad. Such a lame word, but it's true. I feel sad in the most basic sense of the emotion -- like I just need a hug from my mama.

I feel sad I have to miss a friend's wedding, and sad I haven't seen my niece in so long. I'm sad that my family and friends are stuck in this storm with me, and sad that my husband doesn't have a normal wife anymore. And then I realize --  Hell, I've never been normal anyways. (Hehe!) 

I finished my first round of treatment a few days ago, and so far I've reacted relatively well. I have had some discouraging symptoms resurface but all have been fleeting. Knock on wood! (No really, please do!)

Some symptoms go just as quickly as they came -- like a shooting pain from the back of your neck down through the tips of your toes. Other symptoms linger and taunt you. They radiate deep in the joints or confiscate your ability to process information. It's as if the bacteria just wants to remind you its there. 

Though reoccurring symptoms were to be expected, it is not something that you can really be prepared for. The doctors say it could be like this forever. That's a long time, y'all! I just have to take it one day at a time! 

I am learning to be very intentional with my thoughts and to discipline my mind to be positive and hopeful. 

"...it's a mistake to ever look for hope outside of one's self." - Arthur Miller 

Sunday, October 2, 2016

Where I (Think) I Contracted An Auto-Immune Disease

Let me pose a question. Where do you think you can contract an auto-immune disease? Perhaps a sketchy college party or a rusty needle from a back alley tattoo parlor -- heck I don't know! That's a really random question. It's a question that I definitely never thought I would need to answer myself. 

Amidst all of the uncertainty that surrounds Lyme Disease, one thing I do know for sure is -- at this point, I will never know where I contracted this disease. Frustrating, I know! Especially when that is one of the first questions anyone asks. 

I know it was from a tick, but there are ticks infected with this bacteria world wide and cases reported in every single US state, so that doesn't really narrow down the options for me. Obviously, it is from somewhere I have been -- but, I have traveled all over the world, and in the past two years alone, I have visited over 20 US States. 

When my doctors hear my wide range of symptoms, they seem confused and perplexed. Once they review my medical history and blood work, the seem convinced, but not certain. (The Western Blot test is only 14% accurate, so uncertainty comes with the territory.) But then, when I show them where I went just a few months prior to the mysterious back pain that I described in my previous post, it's as if the stars align. 

Let's switch gears before you get annoyed with all I don't know, and I'll tell you about what I (think) I might know. (Okay, that probably didn't sound convincing, but please keep reading! You're not going to believe this!) 

This hypothesis is based on comparing my chronological medical history and comprehensive pharmacy report against the time line of my travels and symptoms. Ironically, I was able to refer back to this very blog to trace my footsteps. And the findings were eerie. Grab your tick repellent, and allow me to tell you a quick story. 

In August 2014, Shane and I took a road trip up the East Coast to visit his family. They host a pig roast each year, and we were so excited to be able to join them. To this day, it is still one of my favorite vacations! Prior to this trip, I had never been farther North than Tennessee on the East Coast, so I was thrilled to cross some states off our list and add to our collection of shot glass souvenirs. 

Hindsight is always 20/20, so before you see the original blog post of this trip, I will fill you in on a few things we realized retrospectively. Keep this in mind while you read the post about our road trip. 
  • Salem, CT is just 8.7 miles North of a small town called Lyme, CT. (This name is not a coincidence.) 
  • Come to find out, Shane's aunt, cousin, two of her children, their dogs and even the dang donkey have Lyme! How have I never even heard of this before some trash TV show? (Hi Yolanda!)
  • This bacteria affects every single person (and animal) differently. Consider it a complete wild card! 
  • And the most controversial bullet point of all --- If caught early enough, a high dose of oral antibiotics can clear out this bacteria while it is still in your bloodstream. When left undetected or undiagnosed, the bacteria has free rein and can wreak havoc on your body. Once it permeates to your bones, muscles, tissues and brain, antibiotics are no long effective and you are left with an auto-immune disease. This bacteria actually builds immunity to your own antibodies and any antibiotics you introduce it to.
Drum roll please --- here is a link to my original post recapping the trip we took in August 2014 -- 

To Grandma's House We Go!  

Sunday, September 25, 2016

Actually Click On It.

Okay. What should the title be for a post like this? Nothing too somber, but something catchy. I mean after all, I need it to stick out among the other posts so people will actually click on it. Oh, that works.

First things first, I don't know where to start. Well, that doesn't really make sense, but bare with me. It has been a crazy couple of weeks. Correction -- years -- but more on that later.

Long story short, there is not a short version to this story. The end ended up being the beginning, so I guess I'll average it out and fill you in starting in the middle.

For the past 11 months, I have been working diligently to recover from a mysterious back pain. I saw 5 different chiropractors, 2 orthopedists, got x-rays, MRIs, massages and was gettin' pretty dang good at yoga if I do say so myself. Nothing explained the pain. Mysterious. I know.

The pain came on gradually and for no apparent reason. At first I felt "jammed", but then a sharp distinct pain like a knife. I was tender and sore all over, but mainly in the joints. I had shooting pain down my left then right leg. "Sciatica-ish" if you will.

I was sore. But, not like I worked out too hard and need a bubble bath kinda pain ... it was different. Mysterious.  As the pain got worse, the compensatory stiffness seemed to set in all over my body, and I was in chronic, unceasing, indescribable pain. 24/7. If Waffle House was open, I was in pain. Okay. You get the point.

Then came the trembling. My legs would flinch, and my hands would shake the way my Pepa's used to when he tried to cut his steak. My toes felt so brittle I thought they could fall right off. Sometimes, I wished they would. I could hardly sit down, stand up, lie down, curl up. By the time I hobbled into my latest chiropractors office, the pain was severe. I called her in tears on a Friday morning, and said -- "I don't have an appointment with you until Monday, but I need you to see me today because I literally can't walk." And thank God she did! This is the sweet soul that really solved the riddle. LYME DISEASE. Crap. That's the end of the story. The end that I said ended up being the beginning. Okay, that's confusing. Back to the story...

Fast forward a few weeks since I'm rambling. At this point, I was having full body muscle spasms. I felt like I had been hit by a truck. I remember I was lying face down in excruciating pain when she asked if I had ever been bit by a tick. A tick? Ew. Who does this lady think I am? I mean, I know I look pretty rough in all this pain, but I am not the camping type. Trust me! And what does a tick have to do with this anyway?

Fast forward through a long list of expensive specialists and confusing blood work, and bingo -- she was right! Lyme Disease. Oh, and that confirms I was in fact bit by a tick because this particular bacteria is isolated to ticks. So, she was right again. Ew.

Prior to this, I had only heard of Lyme Disease on the Real Housewives, so you can imagine my shock when learning about the effects of borrelia burgdorferi -- especially when left untreated for so long. How long? Well that's a whole nother story! And nother isn't a real word.

Stay tuned for my next post. I'll tell you all about where I (think) I contracted the disease. Trust me -- you will not believe me! Wait. That doesn't make sense. (<< Maybe that could be the title!)

Monday, January 4, 2016

Happy New Year!

2016 is off to a great start! Shane and I have thoroughly enjoyed the short work weeks and long weekend the past two weeks.

This past weekend was filled with binge watching Netflix, sleeping late, cuddling with the doggies, spending time with friends and we sprinkled in a few productive errands and chores. 

Shane was off work on New Year's Eve, so he got a few things done around the house and worked out before I got home from work.