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Thursday, January 22, 2015


I admit it. I'm a cotton-headed-ninny-muggins.

"Elf" is one of my most favorite Christmas movies. It's just silly holiday fun, and it makes me laugh out loud every single time I see it. I love it. And at one point, Buddy the Elf says he's a cotton-headed-ninny-muggins, to which all the other elves gasp in shock. That's a bad Elf word. Never to be uttered aloud. But that's exactly how I feel.

Cotton-headed-ninny-muggins. My brain feels swollen, inflamed, and stuffed with cotton balls. I'm definitely a cotton-headed-ninny-muggins.

I wasn't sure I should write about this because it's not kid-related. And I don't want pity. But I decided it's part of our family's journey and it is what it is. So just promise, no pity. Ok. Read on.

For about 15 years, I haven't felt "right." Little things kept coming up here and there that doctors couldn't explain. Low white blood cell count? Probably cancer. Let's do a million tests, including a bone marrow biopsy. Hm, nope not cancer. Nothing, really. It's just the way I am apparently. And I'll probably get an autoimmune disease in the future, doctors said. Hearing loss? Hm. Weird. Maybe it's genetic, maybe it's from antimalarial medication I took every week as a kid in Africa, who knows. Migraines? Probably just the way I am. Vertigo? MRI's, neurologists, medications, and finally a diagnosis of either it's hormones or it's part of my migraines. I get it with or without the headache part of the migraine. After Ella was born, I suddenly was allergic to everything on God's green Earth. Plants, foods, animals…crazy. Chronic pain in my neck and shoulders? Doctors said it was the stress of caring for my children. And lack of sleep. But lack of sleep they said was also due to stress. Anxiety and panic attacks? Stress. Joint pain was due to inflammation, they said, but why I have inflammation no one could figure out. Stress again, probably.

My point is, I have a million trillion quirky things wrong with me that people my age usually don't have. This list could go on and on and on. I've been on a journey for the last couple years, and finally I see where I've been traveling. I've finally found some answers.

About 2 years ago, a friend of mine found out she had Lyme disease. As we were talking one day, I was saying how I have such chronic, horrible pain all the time in my neck and shoulders. My friend asked if I had ever thought that I might have Lyme disease. I scoffed at that initially, because I hadn't ever been bitten by a tick that I could remember, and I thought it was just the stress of my life affecting me physically.

But my friend planted a seed with that question. And every single day that I wake up alive on this planet, I will thank God for her. Because of that seed, I've gone on quite a journey.

Over the past 2 years, my symptoms grew and intensified. I tried all kinds of natural therapies. PT, OT, chiropractic care, massage. Everything gave me momentary relief from pain but it only lasted maybe 24 hours. Finally the thought sunk in that this isn't how a person my age, who is relatively healthy, should be feeling. When all the kids went to school this year, I really felt it. I didn't have toddlers I was bending over to pick up or put in car seats all day. Why did my back still hurt? The boys all sleep much better since they've been medicated for sleep, and although Ella wakes up frequently at night, her sleeplessness is different than what her brothers experienced. Less intense or something. So I was supposed to be feeling more well-rested instead of groggy and exhausted every day. Why couldn't I remember ANYTHING? I thought I had dementia. Truly. I forget where I'm going sometimes when I'm driving. I forget names. I forget what I went into a room for. I forget everything all the time. Not normal.

I went to a rheumatologist for help with my pain. She diagnosed arthritis in my neck and gave me medication. The meds didn't even touch the pain. She did a blood test for Lyme disease which detected something, but wasn't a definite "positive."

In the meantime I started working with a holistic nutritionist. Through some testing, she said there was some kind of tick poison in my body, but she couldn't diagnose specifically what it was. In October of 2014, she suggested trying a gluten-free diet to see if my intestinal issues improved. Within a week, my daily headaches were gone. My intestinal trouble improved significantly. I felt so much better inside that I decided to stay on the GF diet. 

Then my friend told me about the doctor she was seeing who was treating her Lyme disease. I looked at his website and it said he could treat chronic pain! I thought about having him test me for Lyme disease. But I argued myself out of it, because I wasn't convinced there was anything really wrong with me. I was probably just making it all up. A doctor would probably laugh at me and my crazy symptoms. I talked with my parents about it. They supported me going to this specialized doctor, even though insurance wouldn't cover it. Because who knows, maybe there was something wrong with me that someone could treat.

Over the last year, I remembered that when I was about 8 years old, I had a tick embedded in my belly button while in boarding school in Africa. (Trying to remove that disgusting creature was very traumatic. Ick.) There were enough questions and doubts in my mind that I thought I had at least enough evidence to present to a doctor without being laughed at. I thought at least a doctor would see what led me to believe there might be something wrong with me, even if it ended up to be all in my head. So I booked the appointment.

This doctor has a long waiting list. So I was ecstatic when his office called to say they had a cancellation 2 weeks early! The receptionist laughed at me, because I was so overjoyed. I couldn't wait to see the doctor. 

When I met this amazing person I now call my doctor, I trusted him right away. Not only because he has helped a couple people I know, but also because he obviously knows exactly what he's talking about. He asked me all kinds of strange questions for an hour. I had brought my list of symptoms- two single-spaced typed pages of complaints. Crazy. He asked me about all kinds of things that totally made sense to me, but that no doctor has ever asked in my 15 years of looking for help. He thought it was weird that someone my age was diagnosed with arthritis. He was skeptical that my vertigo is related to migraines. He said I shouldn't have brain fog. He said it's not normal to forget where you're driving, or forget what you're supposed to be doing. 

He didn't laugh at me. He didn't laugh at me. 

So of course, being the cotton-headed-ninny-muggins that I am, I burst into tears. I told the doctor I was just so grateful that he was taking me seriously, that he believed me, that he knew what needed to be done next. I was so relieved that there was actually something wrong with me. I didn't know what, yet, but the doctor knew what to do to find out.

He ordered blood and genetic testing. The lab took 17 tubes of my blood. Whew! I was feeling a little wonky after that appointment. That's a lot of blood. After a couple of weeks, the doctor emailed me the results of most of the testing. First, I have mast cell activation syndrome. The mast cells in my body overreact and make too much histamine. This causes my crazy allergies and is why I get hives for no reason. This can be treated with Singulair.

Next, I have celiac permissive gluten sensitivity. Which means I can never again eat gluten without having my immune system go insane and feeling horribly sick. I can't eat gluten. Ever. I've accidentally eaten it twice in the past couple months, and I get violently ill for three days each time gluten touches my intestines. Ugh.

The reason my arms fall asleep when I'm sleeping is because of thoracic outlet syndrome. The muscles on the sides of my neck are so tight that they cut off circulation to my arms while I'm sleeping. Awesome. Try turning off your alarm clock, or rolling over, when you don't have any upper limbs that work. It would be comical if it wasn't so darn annoying.

I also have two tick-borne illnesses. The doctor said we can't rule out Lyme disease, but there are two other illnesses invading my body for sure. Perfect. 

And, the icing on the cake, I have Chronic Inflammatory Response Syndrome. It's a mold biotoxin illness caused by my genes reacting in a crazy way when I'm in a building that has water damage and mold.

So basically my whole entire body is inflamed from my immune system going bonkers over things that most people can handle just fine. I have the sensitive genes for celiac disease, for the biotoxin illness, for histamine overproduction. The genes plus, and possibly, some sort of significant event that put my immune system at risk (think big stress) have put my body in the perfect position to become very ill. THAT'S why I haven't felt well for 15 years. That stupid, fat, blood-filled tick that decided to gnaw on my belly button 30 years ago probably infected me with at least two lovely illnesses. I'm not an evil-spirited person, but I can honestly say I'm happy he got squished, once he was finally extracted from my flesh.

The great news is that:
1. I'm not crazy. 
2. I'm not lazy.
3. There is treatment for all of these things.
4. Did I mention that I'm not crazy?

I started the treatment for the tick illnesses 2 1/2 weeks ago. The medication causes your symptoms to flare at first, so it was a tough couple of weeks. I think I'm past the worst part now- I have a little more energy at least. I still have most of the other symptoms, but the doctor said that I won't feel great after the tick treatment, because I still have to be treated for the mold illness. We can only treat one at a time. I did a mold test on our home to make sure it's not too moldy for me to live in, and it passed the test so that was a huge relief to me. 

I've been researching these illnesses and trying to wrap my head around all of this for the past month. It's so mind-boggling that you can be so sick and no doctors know how to help you. No tests show what is going on in your body. For 15 years, I've been looking for help and no one has been able to provide it. Isn't that mind-boggling? None of the doctors did the right tests. They didn't test for the right things because the illnesses I have are considered controversial and possibly not even real. Ha! Isn't that funny? There's all this political insanity surrounding these illnesses, like Lyme disease. Insurance doesn't cover the doctors who treat these illnesses because they aren't the standard of care. I'm really beginning to hate that phrase- "standard of care." I've had to go outside the box to find help for my illnesses. I've had to go to a doctor that insurance won't pay for. I've had to endure all kinds of tests and procedures over the past decade- all of which didn't show what was really wrong with me. All of my symptoms are explained by the diagnoses my new favorite doctor has given me. And he didn't just diagnose me willy-nilly. This isn't "voodoo" medicine, as my sweet husband likes to call my out-of-the-box ideas. My diagnoses are based on blood tests! Genetics! Real live things you can see that aren't subject to interpretation. They're real results that tell that I'm really sick. So there. You can take your "standard care" and poop on it, for all I care.

The doctor is hopeful that I am on the path to recovery. He is the only doctor in Illinois who is certified to treat my mold illness based on the medical protocol created by the doctor who discovered the disease. The only doctor in the whole state! That's crazy! The doctor is amazing. I'm thanking my lucky stars that my path has led me to his front door.

So when you see me out and about and I seem a little dazed and confused, now you know why. My brain is full of cotton balls and my body is on fire with inflammation. I look "normal" but trust me, I do not feel normal. This is a recurring theme in my life that apparently I still need to work  on. Remember how my children look "normal" but have invisible special needs? Well now the same applies to me, I guess. Now I can understand them on an even deeper level, so that's the silver lining, right? When you talk to me and I'm confused about what day it is, or don't remember that we talked about something three days ago, just remember my brain is full of cotton balls and my pain level is probably at a 9 out of 10. When I put the milk away in the pantry and the crackers in the fridge, please remember my brain is full of cotton balls. I'm not what I once was. 

I told the doctor I never used to be this dumb. These illnesses take the life out of you. And I'm one of the lucky ones. For some reason I'm not as debilitated as many many other people who have these same diagnoses. So many people are silently suffering- some without even knowing what is going on in their bodies. I'm yet another example of why people shouldn't judge others based on appearance. Sure, my kids and I look "normal," but inside our bodies there are wars being fought. Wars of illnesses, wars of neurological issues, chemical issues, tic and tick issues, sensory issues…

Jonah keeps telling me there is no such thing as "normal." He's very right. We know that, but too many times the world judges based on a perception of what is "normal." Even though I look "normal," now you know why I'm actually a cotton-headed-ninny-muggins. Here's hoping to clear the cotton balls out of my head someday. In the meantime, thank you to Buddy the Elf for perfectly describing how I feel. Here's to being a cotton-headed-ninny-muggins.

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