Knowledge is Power and I Love Power!

After writing my last blog, I laid in bed thinking and wondering about my future, about the lives of everyone in the documentary UNDER OUR SKIN, wondering “what if?” What if they had gotten treatment sooner? What would change if I went straight to a Lyme specialist, instead of going to the endocrinologist? What if there are thousands of people out there that are undiagnosed and uneducated on this Lyme epidemic? I find myself compelled  . . . no longer  worrying about my health or my own need for a diagnosis, but compelled to do something that has an impact on the world. To educate others. Because when you’re educated, you no longer have an excuse.

We received my boys Autism diagnosis early on.  They were able to receive treatment at a very young age – and I am so thankful for that. But what about those parents who don’t know that their son spinning the wheel on a toy truck for hours is a symptom and not a love of trucks? Or what if they were in denial, until their child’s fourth grade teacher brought it to their attention. It’s one thing to not know . . . but it’s a completely different ball game if you know; if you are educated and choose not to take action.

So, that’s what I’m doing. Whether I am Lyme positive or not. I am officially a Lyme activist! Today, on this 30th day of December in the year 2013, I vow to do my best to educate others on Lyme disease and to assure them (in fact – ENCOURAGE them) to disagree with their friends, family members, co-workers or even doctors – when they are told that their symptoms are just in their head – that they are just fine. No, we are not just “run down.” Good bye to the quiet, laid back girl who cringed at the thought of controversy. Welcome the new and improved Mother Warrior. This time, not only fighting for my boys, but now I’m fighting for myself and mom.  (I have a feeling 2014 is going to be quite a year).

2 Timothy 1:12   For this reason I also suffer these things, but I am not ashamed; for I know whom I have believed and I am convinced that He is able to guard what I have entrusted to Him until that day.

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Under Our Skin

I am filled with even more determination to fight for my health and educate the public about the misconceptions of Lyme disease, after watching UNDER OUR SKIN.  This is a real-life documentary that exposes the controversy surrounding chronic Lyme disease. Wow… I’m really speechless, it’s like I’m reliving old Child Study Team meetings – where I’ve begged and pleaded with the entire team to provide behavioral services and a full day with typically developing peers for my children. My request was denied over and over. BUT, the minute that we hire an attorney who advises us to consult with a Special Education Consultant – who then observed their classroom to ensure that it was meeting their needs, the Child Study Team leader calls me and invites me to tour schools outside the district that provide a full day, with behavioral therapy…. at their cost, of course.

I knew that was what the boys needed; the entire team knew it was what they needed; but it wasn’t until I could hire someone (third party) to prove it – it didn’t matter. So, that’s what I’m doing. Just praying that I seek the medical attention that I need. I don’t want to jump to conclusions, but I want to be smart about my health. I sat down tonight, prayed that God would speak to my heart, lead me in the right direction. I’ve been struggling today on whether or not I should skip the appointment with the endocrinologist and just go straight to a Lyme specialist. It’s an hour away, and of course it’s not covered under insurance – so it’s a tough call to make. Hence the prayer 🙂 I was led to Genesis 39:21 But the Lord was with Joseph and showed him mercy, and He gave him favor in the sight of the keeper of the prison . . . 23 The keeper of the prison did not look into anything that was under Joseph’s authority, because theLord was with him; and whatever he did, the Lord made it prosper.

As always, HE answered my question. It doesn’t matter which doctor I see first, or how long it takes to get an answer. HE is with me always. Whatever I do, the Lord will make it prosper – so if I have to suffer for another few months or years to get my diagnosis, then that’s what I’ll do. In the meantime, I have the opportunity to share my trials and tribulations and bring hope to someone that may be struggling right now. I’ll continue to do what I do….. educate myself, pray and share. I will glorify God throughout the entire process.

Convenient Memory

The mind is a beautiful thing. It’s absolutely amazing how you can conveniently block out certain parts of your life, as if they never even happened. Think of a woman who just gave birth. She has suffered through hours and hours of unimaginable pain, and the minute that baby is put into her arms, the pain is a distant memory, and she’s ready to have five more kids.

That’s kind of what I’ve been going through. I’ve actually been second guessing my mommy gut instinct.  Maybe I am just run down, and maybe this is simply a case of “mind over matter.” I had been feeling almost completely symptom-free and back to myself the last few days. So much so, that I was starting to think that maybe I was just being a big wimp about everything I’ve been going through for the past few months . . . .  until today.  I guess this is what you call a “flare up.” Well, it confirmed without a doubt in my mind, I’m not a wimp. Something is definitely wrong. I am not a hypochondriac. What I am experiencing is very real. 

For documentation purposes, I’m going to do a quick head to toe list of symptoms I’ve had tonight:

– migrane
– teeth sensitivity
– sensitivity to sound & light
– ears ringing
– jaw pain (tooth pain)
– neck, shoulder and back pain
– pins and needles sensation in my arm
–  arthritis pain in my wrist and knee
– pain in my shin
– overall body aches
– muscle spasms (not limited to just one part of my body)

Now, google Lyme disease symptoms . . . . . hhhmmmm pretty similar to what I just listed, right? I get it, I have to follow protocol, Lyme is a very controversial issue in the medical world, but I KNOW that this is what’s going on in my body. And I know that the longer it takes the doctors to start treating it, the more progressive this disease is going to get. 

Again, this whole Lyme journey is so similar to what I went through with the boys and their Autism diagnosis – and my mom with her Alzheimer. We all knew what was wrong. Yet, we had to go through rounds and rounds of tests and evaluations, wasting several years of valuable time for what? To have the doctors tell us, what we already knew all along. 

But in hinds sight, it wasn’t a waste of time. It was God’s plan. If it wasn’t for the struggles I went through with the Autism fight, I would have never known how to be my own Lyme Disease Advocate. But God allowed those things to happen in my life, so I would be strong enough and confident enough in myself, to weather this next storm. And like I always used to say, Life is not about waiting for the storm to pass, it’s about learning to dance in the rain. So, after my detox bath I’m going out dancing! (better yet, I’ll let the sugar plumbs do all the dancing in my head, while I’m sound asleep).Image

Third One’s a Charm

Merry Christmas! It’s Christmas Eve and I am so blessed to have been given a new life, a new opportunity to strengthened my walk with the Lord over, and now to be able to share my story and hopefully, through the Holy Spirit, be able to help and inspire anyone that may be going through a similar situation. 

As the title of this post states, the Third One’s a Charm, right? If that’s the case, then this next doctor that I see should be the one to finally diagnose my Lyme disease. Can you hear me chuckling and the sarcasm in my tone? I highly doubt it. But that’s okay. I know that this is going to be a rough journey for me, like it is for most people who suffer with Lyme disease. I know that it’s all part of God’s plan for me, so instead of being skeptical and negative, I’m actually excited! Bring it on!

I know that every trial that I go through is God’s way of preparing me for something else in my life. Being an Autism Advocate for my children, I found an inner strength that I NEVER thought I had. I am typically a quiet, laid back type of girl, who is more of an observer than a do-er. I hate confrontation and I am usually very positive and see the silver lining on every cloud (because I never confront anyone or anything!). But when I saw the significant delays that my boys had (which were very clearly pointed out in various tests and examinations)  and how the Child Study Team minimized these issues, I realized that no one (not even the schools that were so highly recommended) were going to fight for what my children needed. I had to fight for them. And overnight I became a Warrior Mom! Nothing or no one was going to stand in my way. My children were going to be in the appropriate school, in the appropriate classroom, with the appropriate aid and receive the appropriate services that they needed as individuals. Not what was convenient for the Child Study Team and our school.

My boys had the diagnosis. They had the results that proved their delays – the struggle was getting them the help they needed. I KNOW that I have Lyme disease. My blood work however does not confirm it. And I’m guessing it’s not medical protocol to believe your patient’s mommy gut instinct over their scientific blood test results. Just sayin’ . . .

My second round of blood work comes back (negative for Lyme of course) that I have antibodies on my Thyroid, so my new family doctor (many, many reasons why I had to get rid of the doctor who sent me to emergency room for jaw pain, but we won’t go there) is sending me to an endocrinologist. I will be a good patient and follow doctor’s orders and see this specialist. I will also pray that this particular doctor will listen to me  . . .  really listen to me, and lead me on my path to recovery. However, if she doesn’t, at least it will be more ammunition for my blog! I have had many, many blonde moments in my life and I always feel the need to share them with others. This allows me to laugh at myself, instead of getting upset – and it not only entertains others, but they can learn from my stupidity (or a nicer way to say it, my lack-of-common sense). It’s a win-win for everyone.

Luke 2:10 And the angel said unto them, Fear not: for, behold, I bring you good tidings of great joy, which shall be to all people. For unto you is born this day in the city of David a Savior, which is Christ the Lord.

Fear not! Whatever trial you are facing, it’s all part of God’s plan. And what He has in store for us, is WAY better than anything we could ever plan!

Merry Christmas!

The Importance of an Answer

Why is it that as humans, we always feel the need to find an explanation for everything? When are the rough times going to end, why are we going through this, what’s going to happen next? As a Christian, I know that it’s all part of God’s plan – so I try not to second guess the things that happen in my life. I’m a pretty passive person, so usually that’s not too hard for me. My husband on the other hand – not so much. But what I have learned about myself over the past few years, is that when it comes to getting a diagnosis,  I search endlessly for answers.

I have four children – a ten year old and seven year old triplets. A few years ago, two of the triplets were diagnosed with PDD-NOS (Pervasive Development Disorder-Not Otherwise Specified). Nice label, huh? Basically it means that they have enough delays across the board to qualify them for the Autism diagnosis.

When we got the official diagnosis, I wasn’t traumatized.  I wasn’t even upset. I had known in my heart for at least a year that they were on the Autism spectrum. So, if anything, it was a relief. It validated that I was not crazy. But on the way home, my feelings about the diagnosis started to change. The fear of the “A” word; the stigma that was attached to it; all of these things started to overwhelm me. But when we got home, and we all cuddled up on the couch, I realized that nothing had changed. My boys were the same that day, as they were the day before their diagnosis, and they would be the same crazy boys the day after. The diagnosis had changed nothing.

Years later, I find myself in a similar predicament. A laundry list of medical symptoms and a mommy-gut instinct that tells me something is definitely wrong. But every medical test comes back the same – inconclusive. I’m about to make up my own diagnosis:  PPFD-NOS (Pervasive Pain Fatigue Disorder – Not Otherwise Specified)!

A few months ago, I discovered a round rash on my ankle. I wasn’t sure what it was, so I Googled images of Ringworm. My rash looked similar to those in the pictures, so I assumed that was it. I’ve got a house full of rug rats running around, so it seemed very possible that I could have contracted it from one of them. I put some cream on it and soon it disappeared.  It wasn’t until two months later, when I was being tested for Lyme disease, that I even thought about that rash again. I had been on antibiotics for a week (for what I thought was a sinus infection) and my symptoms continued to worsen. Aside from the headaches, pressure and back pain, I now had jaw pain (which I have since learned is a cardiac symptom for women). As soon as the words JAW PAIN left my mouth, I could hear the change in my doctor’s tone. He sent me to the ER fearing I was having a heart attack. I knew my heart was just fine, and that it was going to be a huge wast of time and money – but at the same time I was hopeful that while I was there, they would figure out what WAS wrong.

Thanks to the wonderful world of technology and blogs like this one, I realized that all of my symptoms were classic Lyme disease. What I also learned is that there is no reliable test to determine if someone has contracted Lyme disease or is cured of it. False positives and false negatives often occur, though false negatives are far more common. In fact, some studies indicate up to 50% of the patients tested for Lyme disease receive false negative results.

With Autism there’s this hope that once you receive your diagnosis, you will now have access to all of the services and therapies that you need. Well, that’s not exactly the case. Yes, the diagnosis gets you access to treatments, but they can be extremely expensive, and not everyone on the Autism spectrum responds the same way to every treatment. Therefore you often find yourself fighting for therapies that may or may not help. With Lyme, the treatment is simple . . . antibiotics!  Sounds easy, right? And you would think that since I had a bulls-eye rash and this huge list of symptoms, the diagnosis would be the easy part of this whole process – not so much! So, far two Lyme tests were done and both came back negative.

Now my journey begins, trying to be proactive and be my own advocate, while at the same time trusting in God’s plan. Similar to our cross country move that never happened, I know that God will open and close the right doors for us. But there’s a fine line between praying for a door to open, and trying to knock it down yourself. “He will cover you with his feathers, and under HIS wings you will find refuge; his faithfulness will be your shield and rampart.”  Psalm 91:4