I know that I shared my story back in May, but since then I have gained new friends, both “real people” friends, and “virtual friends” (new readers to my blog) AND there has been some progress in my health story, so I thought I might re-share my story with you guys. It is a long story, and isn’t a pretty one. But it is a story of growth, family, determination and how I attempt to find joy in the midst of chronic illness.
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.
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.
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.
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!
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.
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.
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.
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.
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.
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 this year (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.
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 4 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.
BUT, a new chapter of my story is unfolding. One filled with uncertainty. Sounds fun and exciting, right? HA! I sure wish it was, but I am still afraid to hope, so let me fill you in, and you can hope for me if you so see fit. Deal? Oh, and no judging or jumping to conclusions until I’ve told you everything, okay?
Homeopathy. After the *LIGHTBULB MOMENT* in March of this year (2016), we have been doing 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 are what started all of my health issues, 4 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 has become VERY appealing to me. I’m not going to lie, I am now 4-5 months into the homeopathic treatment & I’m still skeptical. BUT, this treatment and mindset has made more sense than anything else has of the past 4 years. What all have I been doing with this “treatment”? I’ll give you the highlights.
In May I had my first scan and it showed everything from several vertebrae out of place, to key minerals/vitamins that I can’t absorb, to a gallbladder that isn’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 have set up camp in my body, I can’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 has 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 has been…interesting. BUT while it has been incredibly hard, and many tears of frustration and pain have been shed, progress is SLOWLY being made. I can tell my gut is slowly healing because I now have an appetite and I’m finally able 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! As I am SO close to the end of Phase II and the Lyme medicine is kicking my bum (it has been a rough week), I keep reminding myself of those good days and pray that they will come back once I’m done with my medicines. I go back for a re-scan in a week or so to see how my body is adapting/healing and I am PRYAING that the Lyme will be gone from my system. If it’s not, I will have to take another Lyme medicine that is 10x stronger than the previous medicine….I *really* don’t want to have to take that medicine. This journey of healing my body will be a long one. It’s been 4 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 want so much more for my life, so badly, that it hurts. I don’t want some super fantastical, magical life. I just want to be able to function and LIVE.
So there. That is the new chapter that is unfolding in the midst of this crazy thing called life. I’ll let you guys decide and hope for me.
If you’ve made it to this point of my post, I apologize for its length. Its 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 4 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 4 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.
*But seriously, I would appreciate any prayer you could send my way. Scan time always makes me nervous, and it has been a really rough week. I see my progress, but it’s not quite enough for me to be able to function on a daily basis that I so desperately want (so that I can pursue a job, life, and more), and that hurts. A lot. I know He has a plan for me, and it’s one that is greater than I can fathom, but trusting that has been hard. But as I’ve come to realize, that is what faith is all about! Grappling, and fighting to trust even when it feels like your life if falling apart.
**PLEASE remember when you look at my pictures and my smiling face on a few of them, that my chronic illness is invisible. I may “look good”, but that is usually make up covering up the tears and breaking heart. It may look like I’m “posting a lot”, but that is me fighting tooth and nail to LIVE and not let the chronic illness win. Pictures can be deceiving. They don’t tell the full picture of all the tears, exhaustion and discouragement of the past months. They don’t show how my exhaustion gets so bad I can’t make my eyes focus, or that I can’t think straight. What they do show however, is my FIGHT.