My Story – UPDATED

It has been a year since I last shared my story, and since then I have gained new friends, both “real people” friends, and “virtual friends” (new readers to my blog/FB page). And since there has been some progress in my health story, I thought I might re-share my story with you guys. Also, if my story can in some way help someone else with ANY form of chronic illness (Lyme, vaccine injury, Dysautonomia, POTS, Endometriosis, etc.), I’ll keep sharing it. My story is a long story, and isn’t pretty. But it is a story of growth, family, determination and how I attempt to find joy in the midst of chronic illness.

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May 2012 found me finishing up with my A.S. degree from Jefferson State with every intention of going to the University of South Alabama for Nursing School. From the 2010-2012 school years, I worked 2 part time jobs, took 12-17 credit hours per semester, served as an JSCC Ambassador (helped in the office, gave tours, assisted students with applying for enrollment/classes, assisted with events, etc.), and kept a 3.91 GPA. I had NO health issues whatsoever. In 2012 I was accepted into USA’s Nursing School, completed all of my vaccines required for nursing school (This is an important fact, remember this), became CPR certified, secured an apartment, and only had 1 class (Microbiology) to take that summer before I would be ready to move down to Mobile and start USA’s nursing program in the Fall. I had everything planned out. Or so I thought. I didn’t plan on health issues.

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Starting around March/April of 2012 I noticed that I was getting tired very easily. I chalked it up to the 17 credit hours, 3 part time jobs, and stress of getting ready to move 6hrs away from home. But by May it couldn’t be overlooked anymore and went to a holistic doctor that I’d heard good things about. This doctor did a lot of tests and determined that I had too much Candida in my gut, and needed to do a VERY strict yeast/sugar/grain/legume free diet for a year, and that would make me feel ALL better. So I did. I started the extreme diet and 3 months later, moved down to Mobile, AL for nursing school. But as most of you know, I didn’t handle the move very well. Anxiety and panic attacks were a daily occurrence (and often happened multiple times a day) and it quickly became apparent that it would probably be best for me to move back to Birmingham. I think the anxiety of being 6hrs away from home in a strange city where I only knew one person, my roommate, just proved to be more than I could handle at the time. Anyways, I moved back home and thankfully was able to get my job back where I was a Physical Therapist Tech/Aide. I continued the strict diet in the hopes that my exhaustion would easy up.

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But in May of 2013, I was no better. After one appointment with my ENT for my TMJ, he recommended I go see a Dysautonomia specialist because he thought my symptoms fit that “diagnosis”. By this time I had extreme exhaustion, was often lightheaded and dizzy, and had heart palpitation/racing heart rate. The Dysautonomia specialist confirmed that he thought I did have Dysautonomia based on my symptoms and tilt table test (my heart rate would more than double when going from laying to standing, rather than jumping just a few points). He started me on 4 medications and the instruction to drink a gallon of water a day. And it QUICKLY became VERY clear that I am EXTREMELY sensitive to *any* medication and only need ½ of a pediatric dose for it to be 100% effective for me. I spent many days with my blood pressure too low to get off the couch. But we finally found the balance to where I could get off the couch and go to work.

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I kept plugging away and staying 100% faithful to the treatment plan until December of 2013 when I began having really bad lower back pain. One doctor led to another doctor and I ended up having surgery in December where it was confirmed that I have Endometriosis. At that point, all I could think was, “well, when it rains, it pours”. But this doctor is the best doctor I’ve ever had because he truly LISTENED to me and my symptoms. He recommended I go see a cardiologist that he knew because he knew I wasn’t getting anywhere with my current doctor. So I did. I changed doctors and this new cardiologist shocked me by saying “you don’t have Dysautonomia”. She swore to me that she thought I had SVT (Supraventricular Tachycardia – VERY fast heart rate) based on a missed Holter Monitor test I had the year before. Apparently during that monitor test a year before, my heart rate went from 35 to 185 and my heart stopped beating over 10 times for longer than 4 seconds each time. And I had no idea! She said that I HAD to see a different Cardiologist so that I could get a Cardiac Ablation (where they burn off the extra electrical heartbeat in my heart – scary stuff!). At this point, I had to quit my job. The exhaustion was still extreme, making daily life difficult. I would work 10-12hr shifts, come home, sleep, get up the next day and do it all over again. On weekends I wouldn’t move off the bed, trying to recover from the week and recoup on my energy. I was trying to switch heart medications, and my heart rate would skyrocket to 160bpm simply with me standing up. On Valentine’s Day in 2014 I had to spend 24hrs in the hospital because we couldn’t get my heart rate down to a safe level. Needless to say, things were rough, and I couldn’t function. My cardiologist pulled some strings and got me an appointment for my ablation (an appointment that normally takes 6-8months to get), and in March of 2014, they burned off part of my heart. Gosh, that still sounds SO scary!

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As I waited for my heart to heal, and wasn’t able to work, I entered a really dark time of my story. Depression loomed over me and I couldn’t see the light at the end of the tunnel. I knew the light was there, but I was so tired of fighting to see the light, and not being able to. I never was suicidal, but my life grew very dark. I spent most of my time in bed, glued to a movie or music, trying not to think. Tears of pain, discouragement, despair, and grief were a constant “friend”. I entered a 2 month partial admittance recovery program of sorts and started to come out of the depression/grief a bit. During this time I was told by doctors that I needed to take an antidepressant. But because of my EXTREME medication sensitivity, I had very adverse reactions to all the medications I tried. This triggered a lot of gut problems, which is one major reason why I chose to stop attempting more antidepressants. I had my depression under control without them, and chose to come off all of the antidepressants.

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By this time it was July of 2014 and was still crippled by exhaustion, brain fog, dizziness and other symptoms. Luckily, one of my doctors noticed that my bloodwork was off and sent me to a Hematologist who discovered that my Ferritin was 7. It is supposed to be in the 150-300 range…. So I had an immediate Iron Infusion. THIS was my problem and THIS was going to make me feel ALL better! Or that is what I let myself hope. Unfortunately the iron infusion made me HORRIBLY sick, and I spent a week puking my guts up. By the end of the week, I had a pulled abdominal muscle and nausea to add to my host of symptoms. And overall, the iron infusion didn’t touch my extreme fatigue.

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At this point, I had exhausted the Dysautonomia specialists here in Birmingham, and in September 2014, the decision was made to drive to Virginia to see a Dysautonomia specialist. His “diagnosis” was Severe POTS and Dysautonomia, started me on over 5 different medications, and sent me home. Over the next 2 months I took the medications religiously despite them making me so sick I couldn’t get off the couch for over 8 weeks, and my blood pressure being so low I had to lay with my feet elevated so that I wouldn’t pass out. Needless to say, the medications made me 10x sicker and after giving the medication a fair chance, decided to stop them.

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It was then November of 2014 and I had been unable to work or go to school in over a year, and I was willing to do just about anything in the hopes that I’d feel better. So I chose to go back to a different doctor in the same practice as my original Dysautonomia specialist. She wanted me to try IV fluids once a week for a month or so to see if that would help and to see a gastroenterologist for my stomach issues. My stomach was completely torn up from all of the attempted medications over the last year and a half. After seeing the gastroenterologist and attempting the IV fluids for over a month, all to no avail, the Dysautonomia specialist told me that all she had left to offer me was an antidepressant. Crushed, I went home in tears, wondering if how I felt was as good as it would get.

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In January 2015 Mom found a study of a doctor in TX that used exercise and little to no medication to help Dysautonomia patients, with great success. I had the option of waiting 6-8 months for an appointment with this doctor in TX, or they could mail the protocol to my doctor, and I could start the protocol under their care. I chose the latter. I got the protocol and after 3 different doctors, found a cardiologist that recognized the importance of exercise and agreed to read the protocol and help me with it. This protocol held great promise. It was exercise based and was medication free, something that I needed since I am SO medication sensitive. So I weaned myself off ALL heart, and anxiety medication and started the protocol. And boy, let me tell you, it kicked my butt! I began exercising 4 days a week and quickly moved up to doing extensive exercises 5-6 days a week. My exhaustion that I thought couldn’t get any worse, did. I couldn’t let myself lay on the couch, but had to keep pushing myself forward. I had several setbacks, finally figured out that I needed to increase my calorie intake to compensate for all of my workouts, but ultimately kept forging ahead with it. I was told that by Month 3 I should start noticing a difference with my exhaustion and other symptoms. While I DID notice that my heart rate was FINALLY controlling itself without medication (Hallelujah!), the extreme, crippling exhaustion was still present along with a host of other symptoms. And because the exercise was obviously helping with my heart, and my stress level, I have kept it up.

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In September 2015 I went back to the original holistic doctor for her advice/help since traditional Western medicine obviously wasn’t helping. I tried countless herbs and supplements. I tried UBI (Ultraviolet Blood Irradiation), for several months. I tried Ozone Therapy for several months. In March 2016 a heavy metals test came back showing that I had a Mitochondrial Dysfunction. (The mitochondria are cells in the body responsible for converting food into energy.) And on the back of the test results it states that some patients “were asymptomatic until provoked by vaccinations or viral infection”. *LIGHT BULB MOMENT* ALL of my symptoms started 1-2 months after getting many vaccinations for nursing school. Unfortunately, at this point I was out of this doctor’s knowledge of how to treat, so she offered me antidepressants, saying she didn’t know what else to do. I had already been doing everything she knew (supplements, treatments, etc.) of, for Mitochondrial Dysfunction.

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I was once again crushed. ONCE AGAIN, I got my hopes up thinking that we were FINALLY on the right track to getting me back to feeling better, only to have those hopes dashed and have a doctor that this was as good as it would get. All I want (and still do) is to feel “normal” and be able to go back to school and get a job. Be a part of society. Have a life. Because staying home, often unable to drive or function thanks to the crippling exhaustion and other symptoms, is not what I thought of when I pictured “where I’d be in 5 years”. It has been an incredibly hard, painful, and lonely 5 years as I’ve been asked to walk this road of chronic illness. Not only is it physically hard, but it is emotionally and mentally hard. Especially when you watch your friends and family move out, go to college, graduate, get “big boy/girl jobs”, get married, have kids, etc., while you are so sick you can’t leave the house on most days. And all the doctors can tell you is, “I don’t know”. It is SO painfully hard. My heart is breaking all over again just typing this.

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BUT, a new chapter of my story then started to unfold. One filled with uncertainty and ‘voodoo’ (or what seemed like voodoo). And while there are *still* times that make me wonder, “is this legit or some voodoo mess?!”, all of it all makes SO much more sense than ANY other diagnosis has. What is this ‘voodoo’ I speak of? Let me enlighten you. (NO, don’t worry, I don’t mean literal voodoo.)

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Homeopathy. After the *LIGHTBULB MOMENT* in March of 2016, we did more research on vaccine injury. Yes, I know there is A LOT of controversy around vaccines, and I really do not want to get in the middle of that. Yes, I do believe that many vaccines are important and I know that they do save lives. However, I do strongly believe that the vaccines that I got for nursing school, along with unknowingly having Lyme Disease, is what started all of my health issues, 5 years ago. Through a series of events, Mom was given the name of a homeopathic specialist that has knowledge of vaccine injury and recovery. What is homeopathy? It is the use of minimal medication/supplements to help the body heal itself as God designed it to. Since I am EXTREMELY medication sensitive, and have been to every doctor and specialist known to man (okay, not every single one, but you get the picture), this type of approach was VERY appealing to me. I’m not going to lie, I am now over 1 year into the homeopathic treatment & I’m still learning more every day, and a tad skeptical. BUT, this treatment and mindset has made more sense than anything else has of the past 5 years. What “treatment” have I done? I’ll give you the highlights.

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In May 2016 I had my first scan and it showed everything from several vertebrae out of place, to key minerals/vitamins that I couldn’t absorb, to a gallbladder that wasn’t really functioning (backing up gunk in my gut, causing food to essentially ferment in my gut), to a leaky, hurt gut, to several viruses/bacteria that were present in my body (that set up camp in my body, I couldn’t shake), and much more. To say we walked away overwhelmed from that appointment would be an understatement. SO much information and a hefty price tag made us wonder what was God doing?! But after praying for direction, we decided to move forward in faith and give this homeopathic treatment a shot. And let me tell you, it was NOT been easy. Fighting off 3 viruses at the same time, for months on end, is enough to make anyone go crazy. Trying to function all while feeling like you have the flu 24/7 was been…interesting. BUT while it has been incredibly hard, and many tears of frustration and pain have been shed, progress was (and still is) SLOWLY being made. I could tell my gut was (still is) slowly healing because I gained an appetite and I finally started to see some muscle definition! In between Phase I and Phase II of my treatment, I had roughly a 2-3 week break from my medicines and I had about 7-9 REALLY GOOD days in a row! I know that may not sound like much, but that was HUGE! After 8-9 months of clean eating (Paleo), and countless supplements/viruses, while progress was made, exhaustion (my original symptom 5 years ago) was still really bad. Crippling at times. One of the ‘issues’ that originally showed up on the homeopathic scan in May 2016 was eye/brain/hearing problems, but since that alone came with a hefty price tag, we chose to focus on the more immediate and pressing issues of viruses and gut health. But when January 2017 came around and exhaustion was still rearing its ugly head, we decided to look more into the whole possibility of eye/brain/hearing problems. Which, if you know me, you know that I’ve had hearing problems for years. The ENT wanted me to get hearing aids back in 2013, but I said no, and have managed with reading lips and subtitles on movies. We never thought that my hearing issues could be somehow tied into all of my other health ‘issues’. So I was referred to a local doctor’s office in April 2017 that does testing for how your eyes work (not just ‘seeing’, but how they physically work), what your brain perceives (or doesn’t in my case), any hearing problems, and more. And the results backed up everything I was told back in 2016 at the homeopathic specialist’s office. Bottom line, back in 2012, I was bitten by something carrying Lyme, and didn’t know it. And when I got my vaccines for nursing school, my immune system was down, thanks to Lyme, and the vaccines attacked my autonomic nervous system. When it attacked my autonomic nervous system, it affected my eyes, brain, hearing, and heart. For example, my eyes take turns working, constantly, as if I was blinking. Try it. Blink alternating eyes for a minute while trying to complete a task. It’s hard and tiring isn’t it? That’s ONE of the things they are trying to correct/heal, and it makes sense as to why my brain/body gets so tired over ‘small’ tasks, and why I’m exhausted all the time. Tomorrow makes session 20/50, and while small progress has been made, the hope is that by Christmas, I will see more of a noticeable progress/decrease in exhaustion.

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It’s been a bit of a roller coaster the past few months. Days solid with babysitting, nannying, photography gigs, family, vision therapy, errands and exercising. Frustration started to take over at how tired I am most of the time. And then it hit me.

Of course I’m tired! I’m watching various ages of kids during the day & am pursing a 2nd part time job. Vision therapy has started getting harder, meaning side effects (headaches, exhaustion, anxiety, short term memory issues – yes they’re normal and to be expected) are becoming more frequent. I tried a much harder workout program recently (Probably wasn’t the smartest idea, but I wanted to try it). AND I’ve upped my jogging distance. And then it *really* hit me.

-Two months ago (July 2017), I ran a mile for the first time in a year. I ran 3 miles this morning.
-Six months ago (February 2017), I was debating starting a new workout program and wondered if it’d be too hard for me/could I physically do it. That program is now a staple in my workouts
-A year ago, NONE of these workouts and jobs would have been physically possible.

So YES, I’m going to be tired. I’m putting my body and brain through A LOT right now. And I’m going to get frustrated at how slow progress seems. BUT, I’m going to remember how far I’ve come, and praise Him for the small steps forward! Who knows how much more progress I will have, and how much of the exhaustion it will help, but any progress is better than no progress. This journey of healing my body will be a long one. It’s been 5 years in the making, so healing will not come overnight. But hopefully progress will start coming a bit faster. The slowness of it all is testing my patience. I never have been a patient patient.

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If you’ve made it to this point of my post, I apologize for its length. My goal was to catch up any new reader, inform current readers along the way. This road I’ve been asked to walk has been hard on many levels, and I am not about to pretend otherwise. I’ve doubted, questioned and honestly gotten pissed off at what He has made me walk through over the past 5 years. And I still question. But I constantly pray, “I believe, help my unbelief”. No, I don’t know WHY I’ve had to endure (and still do) what I have over the past 5 years. I WISH I knew what His grand plan was. But I may not know that until I stand before Him. Until then, all I can do is pray and trust. (Which is MUCH easier said than done!) So, thank you for reading until the end, and I hope maybe somehow, my story can encourage someone.

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Jesus & Coffee

Whew! I don’t know about everyone else, but it has been *quite* a whirlwind of a summer! Vision therapy, 5 nanny kids, 3rd Annual Cpl. Clay Ward Memorial Run to help with/photograph/visit, stomach bug from hell (it sent me to the ER), 2 wedding photography gigs, 3 dead chickens, 1 dead raccoon, my car breaking down (3x in a one month span), family visiting from Denmark, birthdays, trip to the beach and my first 5k! The question I have been asked a lot is, “HOW did you survive this summer?!” Short answer? Jesus. And coffee.

I had every intention of blogging before now, but life happened. I *know* that everyone can relate. Let me give a health/vision therapy update and then I’ll share some pics from the summer. Be prepared for a lot of photos. You all know how much I love photography. 😉

Today was session/appointment 17 out of an approximate 50 sessions/appointments total. When I first started in June, the goal was to have 4 appointments a week (2x on Tues/Thurs), but it quickly became apparent that 4x a week was too much for my brain/eyes/body. The dreaded migraine type headaches came back, and I was essentially getting carsick sitting still. So we decided to back it down to 2x a week. Is it helping? It depends on who you ask. Haha! Being right in the middle of it all, and still feeling the nausea/headaches when we bump up the eye/brain exercises, and still fighting exhaustion, it is hard for me to see the progress. Which, needless to say, is frustrating. But, family and friends have started noticing small progress. The very fact that I was able to do all that I did this summer, says a lot. And I have to keep reminding myself of that, that progress IS happening, albeit SLOW. How much progress will I see in the end? Will I be back to “normal”? I think God’s the only one with that answer. The vision therapy group has seen amazing progress/results over the years, and it stands to chance that it will help me as well. They can’t guarantee anything because everyone has different ‘injuries’ and everyone heals MUCH differently. But, as it was explained to me the other day, right now, my eyes do not work together and at the same time. So essentially, my eyes take turns working, constantly, as if I was blinking. Try it. Blink alternating eyes for a minute while trying to complete a task. It’s hard and tiring isn’t it? That’s ONE of the things they are trying to correct/heal, and it makes sense as to why my brain/body gets so tired over ‘small’ tasks. And it makes sense (as well as gives me a little bit of hope) that by session/appointment 50, I will be seeing more progress.

Things are getting…interesting…on the job hunt front. I am still part time nannying, but now that I’m 26 and am paying for my own health insurance, 1 part time job doesn’t cut it. SO, I am on the hunt for a 2nd part time job. Or 1 full time job. There have been a few leads, but they have all ultimately fallen through. So the hunt continues. And I just have to trust that He will provide.

Okay, okay. I just KNOW you all are dying to see my summer summarized into a few photos, so here you go. Below are some snapshots into my crazy summer! (Disclaimer: Before I get backlash on killing a raccoon, it was getting into the chicken coop and it killed 3 chickens. So, it had to go.)

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Vision Therapy? Huh?

What *exactly* is vision therapy? I mean, what do you do? How is that supposed to help?

Those have been the common questions of late and since today is my LAST day of Phase 1 (HALLELUJAH!), I thought I’d type up a post to explain what exactly I do and how it’s supposed to help.

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Part A of Phase 1 comprised of 24 consecutive ‘treatments’ (I’ll explain those in a minute), 2 a day, for 12 days straight. So basically, twice a day, I drove to their office (45 min one way) for a 30 minute treatment each time, for 12 days. I went in a pitch black room and laid on a bed with a light (approx. 2” in diameter) over my head (less than 2’ from my face). Now, the light would fade in and out and the color would change to every color in the rainbow. The bed moved in an alternating up-down circle motion to a left-right circle motion depending on the day, but because I was in a pitch black room, it seemed as though the light was moving, not me. Brain teaser! I also had headphones on and listened to modulated sounds. Basically, every noise from crickets, to the hum of a crowd, to opera music, to country music and like the light, the noise faded in and out.

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Part B of Phase 1 has been similar to Part A, only I get to do it at home! I still go in a pitch black room (or closet in my case) and have the light box sitting in front of me. I still do 2 sessions a day, but they’re only 20 minutes long, there’s no movement of the light/me and I can listen to whatever I want. Audiobooks have become my best friend.

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They warned me that headaches and feeling worse (along with heightened anxiety) was to be expected, but I honestly never thought the headaches would get as bad as they did. For roughly 2 weeks straight, I had a constant splitting, migraine type headache that nothing touched. And I mean nothing. I tried every trick under the sun, but most of my days/nights were spent in a dark/quiet room hoping the headache and earache would go away. It didn’t, and on day 9 of the constant headache I went to the doctor. My TMJ was flared along with the headache, so he was able to give me a few different medications to help calm my TMJ down. And it eventually did. Thankfully, Biece and Mom were able to help out with the boys I nanny, during the first 12 days of it all. I honestly couldn’t have done it without their help. But today is day 30 of Phase 1 (THE LAST DAY!!!) and the headache is almost completely gone. It is trying to come back today, but I won’t let it!

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How is all of this supposed to help? I wrote about it a little bit in my last post:
https://karasroad.wordpress.com/2017/03/22/vaccine-injury/
but Phase 1 was essentially waking up parts of my brain and eyes that have been ‘asleep/inactive’ for the past 5 years and getting it ready for Phase 2. It didn’t feel like I was doing anything, laying on a bed, staring at a light, and listening to music, but in reality it was working my eyes, brain and ears all at once. So no wonder my head hurt! At the end of this month I will go back for a re-test and consult to see how Phase 1 helped/didn’t help and when to start Phase 2. Phase 2 will be going in 2x a week for sessions and it can last for 7-8 months. As of right now, I don’t know much more about Phase 2, past that brief summary. When asked when I might start seeing a difference/feeling better, they said that most people start noticing a difference 2-4 months into Phase 2. Time to be patient…

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So, as Phase 1 winds down, my regular nanny job is winding down, a new summer nanny job is gearing up, the Marines are preparing to come into town to run in their USMC brother’s memory and help bring awareness to PTSD, Phase 2 will start, I have a wedding photography gig to prepare for (my aunt’s!!), I’m searching for a second part time job to supplement my nanny jobs, and more! AHH! *insert stress here* Haha! It’s going to be a crazy busy summer and don’t get me wrong, I’m super excited about it all. But there is A LOT of unknowns and A LOT of big decisions that have to be figured out in a short time frame (hence the stress). Not going to lie, I’m stressed up to my eyeballs. But I’m doing my best to pray through it all. So, with all that I still have to get done today, I think it’s time for me to sign off so that I can go work on my forever long to-do list before it’s time to get the boys. Any prayers you can throw my way regarding my re-test, and big decisions to be made would be amazing! Also, if anyone hears of a part time job, can you let me know?

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He makes beauty out of ashes.
-Isaiah 61:3

Vaccine Injury??

I bet that title caught your eye! 😉 As some/most of you know, 2 weeks ago I had a 3hr Neuro-Visual Assessment to determine if I had any (and if so, to what extent) underlying eye/eye-brain connection/auditory issues. The homeopathic specialist has wanted me to have this testing for a year now, but to be honest, the testing alone is expensive, so it was put off until my symptoms couldn’t be ignored anymore. While the testing wasn’t ‘hard’, it lasted 3 hours, and by the end of it, I had a pretty good head/eye ache. I received preliminary results that day, but yesterday was the complete consultation where ALL of the testing/results was gone over/explained. Bottom line, the damage/issues they see are more than likely from vaccine injury, and they believe a lot of it can be reversed.

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Let me back up a minute. Vaccines? How does that play into this? Back in 2011-2012, I was gearing up for Nursing School and had to get up to date on my vaccines. ALL of my symptoms (the worst being brain fog, high heart rate, and debilitating exhaustion) started about a month after my vaccines. I KNOW there is SO much controversy around vaccine/vaccine injury, and while I do believe some vaccines save lives, I firmly believe many vaccines TAKE lives (in different forms). We don’t have 100%, black and white proof, and aren’t 100% sure WHY, but what we believe is that when I had my vaccines for Nursing School, my immune system may have been compromised (enter Lyme stage left) and the vaccines basically attacked my autonomic nervous system (ANS). Now your ANS controls ALL of your body functions that you don’t have to think about (brain, eye, heart, breathing, auditory, etc.). So that is where the Neuro-Visual Assessment comes in. Their objective testing was able to determine the array of visual/eye to brain connection/auditory issues that are a result of the vaccines attacking my ANS.

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What exactly did the testing show? Whew. It showed a whole host of issues, but I’ll explain the biggest ones. The first being HOW this is affecting my ANS. Yes, it’s affecting my eyes/brain/ears, but it’s also affecting ME. When you experience any kind of trauma (car wreck, vaccine injury, etc.), your body automatically goes into a Fight or Flight response. And in that Fight or Flight response, your vision goes into ‘tunnel vision’. With most ‘traumas’, your vision goes back to normal once the ‘threat’ is gone. But if the ‘trauma’ is more extensive, your vision can stay tunneled. Which is the case for me. I can SEE outside of the tunnel vision, but I can’t PERCIEVE what is outside of that tunnel vision. Because of this, my body stays in a constant state of anxiety/stress because my body *knows* that I can’t perceive what is all going on around me. So this explains why I fight anxiety/stress ALL THE TIME. Yes, there is some anxiety/stress that I can control, but there is a large chunk that I physically cannot control. The second ‘big issue’ is my hearing. Those of you who know me, I STRUGGLE with my hearing loss. The frequencies I cannot hear are the human voice. Especially male voices. So if you have to repeat yourself a few times for me to be able to understand you, or you see me watching your mouth (I’m reading lips so I can try to understand what’s being said), that is why. And the testing confirmed all of that. It also showed that the damage to my ANS also is affecting me PROCESSING what I do hear. So while I may be able to hear what is being said, my brain has a hard time processing what is said, and then has a hard time turning around to respond to what was said. Lastly, the testing showed that my eyes have been affected as well. Honestly, this part was pretty much Greek to me, but basically, my eyes have a HARD time focusing/working together/tracking and my eyes currently read at a 9th grade level. (I can comprehend at college level, but my eyes themselves physically read at a lower level.) I can see just fine, but making what I see crystal clear is a constant job.

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Whew. Like I said, much more was discussed, but those where the major issues. A normal/healthy brain consumes 25% of your caloric intake and energy in any given day. But when you have a brain that doesn’t function like it should, it takes more energy/calories that you normally have in a day. Which COULD explain a lot of my exhaustion. They feel confident that they can help and that my exhaustion would be lessened. NO, they can’t guarantee anything, but based on the patients they have seen over 25 years and the progress those patients made, they feel confident that their therapies would help me.

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Now that the consultation is over, there are SO many conflicting emotions. The first emotion being relief. I’M NOT CRAZY!! There are LITERAL reasons to explain WHY I feel the way I do! The second being guilt. The testing was expensive and the treatment/therapies they offer are extremely more so. And as of right now, insurance doesn’t cover any of it. There is a good possibility that insurance MAY start picking up part of it, BUT, I age out of my parent’s insurance before the treatment would be over with. We have a few other options to look at before we make a decision, and will continue to pray our way through it all. God has provided thus far. If this is His will, He will provide. I don’t know how in the world He would, but He can.

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Not going to lie, I’m in a bit of a funk today. I’m overwhelmed with all of the information from yesterday and the emotions surrounding it all. And to be honest, I’m ticked off. This wasn’t exactly the ‘5 year plan’ I had in mind when I was in college. I KNOW to trust His plan, but actually DOING it is another matter. My frustration will be used as fuel to keep going, and I will continue to pray for peace and wisdom. One day at a time.

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“Success is not final, failure is not fatal: it is the courage to continue that counts.”
-Winston Churchill

 

It’s not all sunshine and roses

Monday was a great day. I rowed 3 miles, completed Upper Fix (BeachBody), worked on domestic chores, picked the boys up from school & went to the park, took all of my homeopathic meds, and went the whole day without a nap, coffee OR cheating on my Paleo diet. I felt like I was kicking some serious bum and taking names. I had finally found my groove! This I could handle! And I did, until yesterday. Yesterday, the exhaustion was so bad I felt physically sick. Save a 1 mile run that I forced myself to do (which in hindsight I shouldn’t have done), and picking the boys up from school, I rested the entire day.  And even with a solid night’s sleep, today has been rough. It could be the beginnings of a cold on top of the heightened exhaustion, but regardless the reason, I’ve been fighting the feelings of failure all day. Failure of not completing yesterday’s workout. Failure of not making it a week without a nap. Failure of ‘cheating’ on my diet and eating 2 small squares of Dove chocolate last night. Failure of no matter how hard I push myself and give 110% of myself, I don’t gain any traction/make any progress.

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I don’t like posting about hard/rough days, it’s not “fun”. There is nothing “pretty” about vaccine injury, lyme and other chronic illnesses. It is messy and SO hard. Every day is not all sunshine and roses. There are days of a literal fighting through blood, sweat and tears just to make it through the day. But just sharing about the good days would be a lie. It would paint the picture that being chronically ill is all sunshine and roses 24/7, which it is not. So where do I go from here? On days where I’m so tired that my eyes cross and thinking clearly is hard? I ask myself a few questions.
Do I want to quit right now? Yes.
Will I quit? No. I’m too stubborn.
Will I rest all weekend? Yes.
Will I be pissed as all get out? Yes.
Will I cry? Probably.
Will I cut myself some slack? Yes. (I’m trying to)
Is God big enough to handle this? Yes.
Can I trust Him throughout this? Yes.
Am I laying my worries/stresses/health at His feet? I am trying to.

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And THAT my friends, is the REAL hard work. Relinquishing control and TRUSTING Him throughout it all. “I believe, help my unbelief!” (Mark 9:24)

 

Good Re-Scan Results

Yesterday was another re-scan, and thankfully, it went well! This last round of Rocky Mountain Spotted Fever (lyme medicine) was a lot harder (physically), and I wasn’t seeing the progress like I had after previous rounds of lyme medicine. So, needless to say, I was apprehensive as to what the scan would show. But it showed that my ‘numbers’ (numbers that indicate illness/problems) had gone down by almost half! I went from mid-500’s to 297! Yay!! There is still some work to do with my gut, anemia, immune system, gallbladder and a few other things, but overall, she was very encouraged with my numbers and progress.

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However, the frustrating part with the good news is that while my numbers are better, I’m not *feeling* a lot better. And while I only have a ‘few’ things to work on, the amount of vitamins/supplements needed for the next few months (not covered by insurance) is overwhelming. But hopefully with healing my gut more and getting my anemia back under control, my exhaustion & brain fog will become more manageable. And He has provided for my medicines thus far. All I can do now is pray for the means to cover it all. Does anyone know of any odd jobs? 🙂

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So today, I am focusing on and celebrating every small victory, no matter how small, and am trusting that He will provide. Because where He guides, He provides.

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“Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the ill of God in Christ Jesus for you.”
-1 Thessalonians 5:16-18

 

Bittersweet

Being halfway done with my homeopathic medicines is a bittersweet time. While I am VERY VERY glad to be halfway done with the Rocky Mountain Spotted Fever Lyme medicine, I *hate* being at this point in the medication. This medication, over the course of 2 months, builds up the concentration to a max, then slowly backs down to “normal”, and when I am half way through the medicine, I am at the absolute max of the medication’s concentration. Which means that the side effects are at their worst. Painful exhaustion, headaches, body aches, chills, nausea and insomnia (just to name a few). Yuck. It has caused me to miss yesterday’s workout (and my body is making it CRYSTAL clear that exercising isn’t happening today either), so as I sit here typing this out, I am making myself sip on my smoothie (thanks to nausea) and am trying to force the discouragement out.

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I won’t bore you guys with the details, but bottom line, I am so tired and extremely discouraged. Despite how much I put into my health journey, I am not seeing or more importantly, feeling, progress. Not going to lie, the past week has been incredibly hard both physically and emotionally. And while giving up is not an option, that doesn’t mean that ‘throwing in the towel’ is not a VERY tempting thought…

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Over the past month I’ve attempted a ‘Couch to 5k’ training program of sorts (at my specialist’s recommendation), and my heart has NOT liked it one bit. I really thought that with time it would adjust, but my heart rate has been too high, even with me jogging at a snail’s pace. So it’s looking like I may have to stop the Couch to 5k, which has been really hard to accept. Quitting it feels like yet another failure.

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I don’t mean to sound like such a “Debbie Downer”. In the past month there have been a few *good* days that I have soaked in. Unfortunately though, those good days didn’t last. Hopefully those days will come back once my Lyme medicine is complete. Okay, now that I have cried my eyes out while typing this post, I’m going to close with a verse that I’ve been clinging to lately, and pray for a better day.

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“Come to me, all you who are weary and burdened, and I will give you rest.”
-Matthew 11:28