"that log had a child" 😂😂😂
Many people are hesitant to talk about having an on-going illness, especially one that is invisible. Understandable, since most often other people tend to share their self-affirmed opinions, quick fixes, buy my ________, or completely write you off as lazy or looking for a free space. I've watched it. Granted some are trying to help in their own way. I have to admit I used to be one unfortunately (not the "buy my" one, don't start me on that). Then Autism entered our lives and it changed my perspective.
It hit a deeper level when I became sick with something we couldn't figure out. We still don't have it completely figured out. I do already struggle at times as a veteran asthmatic that is induced by allergies/stress/exercise & exacerbated when sick. I know that stuff, I know the triggers & ways to relieve that work FOR ME (I will stick my neck out to say that an anti-inflammatory diet & certain oils absolutely can improve asthma & allergies in many cases, but I know I might hear flak on that... you may want to stop here then).
I am breaking my silence for what stole life as I knew it increasingly over the past 4 years. I know that there is a growing community of people searching for answers and relief like me. I am kind of a newbie to the diagnosis, but at the same time have a wide knowledge base. I believe there is power in numbers and hope to link arms as we find answers and encourage each other on this journey.
Friends & Family, I need to also add this. Please, think before you speak. I know it is usually unintentional, but this is a really big deal to me. I am extremely protective of my kids and know what they can & can not deal with. This is not for them to know until we have more answers... that is one blessing of this, it is invisible & allows us to preserve them from undue anxiety. I am fortunate to be able to do everything, for the most part, as usual. We laugh off when I ask them 7 consecutive times if they brushed their teeth lol. Luckily I'm already quirky ;) No one knows any different except me. Don't asks questions in front of them, it will get cut off... just don't.
Here we go... not quite four years ago I woke up to a rash on my stomach that over the next couple weeks got bigger & bIgGeR & BIGGER. You get the picture. I wish I still had the picture... it would be helpful lol. Folks, I am terrible at blowing things off, "sucking it up," & pushing through. I don't see the doc unless I'm dying. Not really a wise plan of action but in our lifestyle it is what I do. I used ALL the creams, home remedies, & alternative treatments... no result. I asked friends & family what they thought, most were thinking ringworm (ewww, What the!!)... then one friend mentioned Lyme. Sure enough, after looking in the mirror & seeing a classic bullseye, I looked it up and there it was. I never saw or found a tick on me though. I am pretty vigilant to wear repellent. So I went in to the doc. To my surprise though, the blood test was negative. I didn't know much about Lyme. Growing up I heard horror stories about it, but nothing to start from. So I had to trust the docs. Luckily my doc knew not to go by the blood test alone because they are not 100% accurate. After some research, I now know they are quite inconclusive. There are over 100 different strains and the standard two-tier test using ELISA followed by Western Blot misses the majority (paraphrased). Not only that, Lyme is so stinking complicated with it's co-infections and multiple systemic impacts. Many conventional doctors don't know where to start especially if the test is negative & no rash is present. Anyways, my doctor diagnosed me with Lyme and put me on a round of Doxycycline for a little over a month. It was rough, I won't lie. When I finished, I was expecting to slowly feel better, but I didn't. I waited, figuring it might just take a little longer. I kept up with a healthy lifestyle of probiotics/vitamins, eating well, & exercising... & just pushed through.
At the one year mark, I decided it couldn't be right to still feel this way & worse. It couldn't be all in my head like so many people feel, & I totally get it now. Some of my joints were so painful to the point I avoided certain types of exercise. I developed horrible dyshidrotic eczema on my right hand only. Sunlight in spring made me sympathize with vampires ;) My neck pain was so bad it felt like it could explode at any given time, & laying down even on a pillow felt like a jagged rock. So I went back to my doc. She listened & didn't write me off, because she knows if I come to her it must be serious lol. So she ran ALL the tests. She mentioned that she believes that sometimes Lyme can cause an autoimmune response. Well, my nerdy brain gets that. Makes perfect sense. Immune activation events, epigenetics... I could talk all the live-long day. I also didn't want to discredit the possibility that I could still be infected, or re-infected... that's right folks, sad reality is reinfection is possible. I just so happen to live in a hot zone & those tiny nasties are the size of pinheads. Needless to say, it has impacted my once very adventurous, outdoorsy side. So the tests came back with a few deficiencies to work on and a low RA factor. I started seeing a wonderful chiropractor, & also a Rheumatologist who wanted to slap me with a quick Fibromyalgia diagnosis after only five minutes of seeing me. Not too impressed... no thanks. We are going to keep digging.
Fast forward to year two, I got hit with the worst case of strep I have ever had. I can get it fairly easily, but this time... heart murmur, Reactive Airway Disease(RAD), intense pain & pressure in the right side of my neck/head, bed rest... all the meds. I couldn't drive, friends & family stepped in to take care of my family. Related to Lyme? I don't know, but I had to wonder. I am an avid health journaling, researching geek & this wasn't adding up.
After that, a few things stuck around... RAD, random heart racing/palpitations, the weird neck/head pain & pressure. Then I started to struggle with binge-eating in the evenings (not fun to admit). I seemed to be more & more susceptible to Trapezius strains that seemed to turn into continuous nerve pain & tingling in my right arm and hand.
Then year three hit & the atomic bomb fell. I honestly felt a bit unsure how much longer my body would hold out for me. 2017, was kind of scary. I got hit with what seemed like a horrendous flu that left me bed-ridden for a few days. I don't do bed so this was no joke. The worst pain I've experienced in a long time all over my body, terrible-debilitating migraines, vertigo, & disorienting symptoms. As I improved, the migraines & vertigo stuck. Everyday... all day long. I struggled to focus, recall, I was forgetting simple & important things... my memory increasingly got worse. I describe it much like a TV gone static. Easy words... I couldn't find them. Easy tasks... I couldn't remember what to do next. Communicating was humiliating & exhausting & literally painful. Even when writing it takes twice as long, I write words I'm not even thinking. Bizarre. All of my training & research in autism for meetings, workshops, & mentoring... rote memory things, scattered. Lost. I had to make hard choices to withdraw from certain things. I was starting to experience black outs, I would get so much pressure while exercising... especially running that it would overwhelm me. Sometimes it would happen while I was just standing, & once it happened while I was driving. I started having the craziest symptoms all on the right side of my body only. A "catching" & swelling feeling in my abdomen & under my ribcage, pain in my hip & down my thigh, my lady time was intensely worse (sorry guys), neck & back pain- excruciating, electrical-circuiting-pulsing-stabbing sensations up & down the right side of my head & neck & fingering into my eye, cheek bone to nose, & jaw bone to mouth. My right eye felt bulging & intensely dry all the time, droopy & numb surrounding. I also started to battle with my mood & painful reactions to sound, which turned into irritation with my kids. All of this added up within a months time, along with the list of symptoms from previous years. Back to my doc, another battery of tests & this time an MRI... which came back with deficiencies & an abnormal scan result. Time to see Neurology.
Being a fraction of myself, going to the doc, trying to make sense of anything had become challenging. Luckily, I wrote everything down for reference. We went over all my symptoms & he explained my scan is characteristic of chronic migraines, but also possibly MS. Ummmm, what??? What does this mean??? I kind of went numb for a while not knowing what to think about it. I tried not to look it up because it wasn't written in stone yet, but I also wanted to see for myself if it lined up... unfortunately it does. He started me on the evaluation journey for MS, test after test... not fun btw.
We also agreed I needed something to help me function better, so I started two medications. The one I ended up having an allergic reaction to, probably one of the scariest weeks of my life. After we ditched that, the other med took affect & gave me 3 of the most glorious symptom free weeks I have had in years. Then I got a stomach bug & unfortunately all the crazy symptoms came back with a vengeance & began to intensify as the year progressed. Light sensitivity became so bad I couldn't get in the pool with my kids even with strong sunglasses. I would instantly become dizzy, nauseous, & migrainous. Insomnia set in in phases, restless legs, night sweats, tremors, spasms, numbness & tingling in my feet/toes, weakness in my legs, chronic inflammatory response, increased reactions to foods/drinks, & by Fall my symptoms started migrating to my left side starting with my head & then adding on my shoulder & side. We tried increasing the med strength, but nothing. Unfortunately no single test can diagnose MS, it is quite an extensive process. We are still waiting & monitoring as of today.
Here's the catch, my Neurologist and I are not convinced. I am thankful he isn't a quick draw diagnosing type. My gut keeps pointing me back to Lyme. Lyme is called the great imitator. It has a tendency to mimic other diseases and some believe many diseases are misdiagnosed. Those in the spotlight are Fibromyalgia, RA, MS, ALS, & Parkinsons. By saying all that I know I just opened the door to ALL the comments since this is a very controversial subject, much like in the Autism world. I'm quite used to it. We are all adults here. I am going to do what I believe is sound & quite possibly heal myself. End of story. You see, something I forgot to mention earlier... at year 3, my hubs was diagnosed with Lyme. The same month I got the "horror flu." There is an article out there that says Lyme can be transmitted sexually (sorry TMI), but the CDC & most docs say no. I have a feeling that will change. So... back to my primary doc, to dig deeper. She agreed & referred me to Hopkins Lyme Research Center. Not easy to get into, but my case was bad enough to win entry. Yay me! lol. In the Lyme community there are strong feelings about chronic lyme, certain doctors, & the CDC. I am trying to remain objective but some evidence is pretty infuriating. Hopkins is currently trying to determine if patients can still in fact be infected post-treatment, or whether these patients who are experiencing on-going, intensified & debilitating symptoms have actually had an autoimmune response to Lyme. They are calling this response Post Treatment Lyme Disease Syndrome. I can't say I know enough to have a strong opinion either way. I believe it is plausible to still be infected. We are all uniquely different, we can not expect the same protocol to be effective for everyone, especially with severely limited diagnostic testing & treatment options. I also absolutely believe it is possible for Lyme to trigger an immune activation event, causing a genetic vulnerability to "switch on" an autoimmune response. So which is it? Or could it even possibly be both? How can we improve tests & treatment offered by conventional medicine? I am currently reading, when I have time (HA!), Dr. Horowitz's book, "How Can I Get Better?" I have to say it is total deja vu. So similar to books I have read on Autism regarding biomedical approach. Eye opening, complicated, frustrating, most treatments not covered by insurance, & maddening to come to the realization that we have added on another complex diagnosis.
Getting back to Hopkins, treatment for me is the same. Symptom relief and antibiotics, which have a chance of making you better or worse. I expressed my desire to wait & that I prefer to start with alternative treatment. Usually this is when docs insert their "expert" opinions & condescension, but she didn't. She listened, agreed, & offered supportive information.
So, this is how I am starting my fourth year. I am doing Whole30 and my tried & true blood type eating. Seriously, don't even start... you won't win ;) Research it, test it yourself, it's not a fad & has real results for medical conditions. I like to call it bad ass, cuz it's absolutely hardcore. My Hopkins doc supported & recommended magnesium, not just any kind. I could spend an hour on mag. It is a big culprit of so many health problems & different types of mag. help different things. I am using magnesium glycinate. I am also using Turmeric for inflammation, & Oregano Oil for its natural antibiotic properties. I will be continuing probiotics & multivitamins. Obviously what works for one won't work for all. Make sure you consult with your docs. This is where I'm starting & will most likely evolve over time.
So far I am 13 days in, I know it's the 14th, but I'm a bit of a rebel at heart so I couldn't start on the 1st ;) Here's how things are going so far... (guys cover your ear/eye holes & skip ahead) ladies dealing with Lyme, my "crime scene" time was dramatically better. I also had a cold that didn't end up exacerbating my usually weird symptoms. My binge-eating, done. Light-headed, vertigo symptoms- gone. Migraines/headaches, electrical, circuiting sensations- mild. Numbness, drooping, drying, "bulging" in right eye- gone. Nerve pain, tingling in arms & feet- mild. Mental clarity/memory is improving. I do still have pain in my neck (not structural, that was ruled out), but it is better. I do still have restless legs at night, but mild. I do still toss & turn at night with some apnea-like issues, but mild. I do still have a "catching" feeling under my rib. This only a couple weeks in!
I have been listening in Lyme circles & outside. I have read some really great articles, especially this one https://tourwifetravels.com ...which has a great tip for diagnostic testing. A local friend diagnosed before me & well-versed has been a great mentor. She has battled a long list of devastating things. Another friend, who's wife is fighting similar symptoms advised me on parathyroid. Never have I heard of this thing! Wow! Added to my list. As you can see, this is all ridiculously time-consuming. I'm ready for a magic wand.
I also don't want to overlook talking about prevention. NAAPALM. Let's light all those little beasts up!! Sorry. She comes out sometimes ;) Make sure you take precaution, but don't stop living. Enjoy the outdoors. It is recommended to wear light colored, long pants & long sleeves, tuck shirt into pants & pants into socks. Use quality repellents even when just in the yard. Keep up with pets, brush them often & use repellents. Check yourself & kids daily during the active season. https://phpa.health.maryland.gov/oideor/czvbd/pages/lyme-disease.aspx
None of this is to gain sympathy. I don't need sympathy. I have had some time though to make peace with it. Mostly. At least I see it differently. Yes, it's not what I want & it has wrecked my way of life, but it has forced me to slow down & concentrate on my family, myself. I struggle with being a workaholic, coming out of survival mode from deployments. I have wondered for a long time what my twin boys experience and feel with Autism. I feel like I am getting a glimpse into their worlds. A deeper understanding. I am learning to appreciate things more. I live more simply & intentionally, most things seem so superficial now. My faith is stronger. I have a good healthy freedom from people's opinions of me.
The reason I am sharing my story is to hopefully help some who are feeling alone in searching. If you are battling with something invisible, whatever that is... I promise you I've had more than a few. I hear you. I feel you. I understand you. You are not alone. We are not alone. Stand tall. You are stronger than you think. You are doing this crazy life thing while feeling like a fraction of yourself... ya know, like life years being sucked from your body like that machine Prince Humperdinck put Wesley on in Princess Bride ;) uhem... sorry, moving on. Reach out. Ask for help from those you trust. Don't give up. Keep getting up. Keep moving.
I'll see you back here February 1st with an update on the results of my 30 days.
