Let me start by saying this post is so far outside of my comfort zone and my norm that it has taken at least an extra week to write and brought me to tears more times than I can count in that time.
If you know me at all and you start to reflect on what you actually know about me as a person you will realize that it is surprisingly little. It will also dawn on you that I almost never volunteer information about myself or what is going on in my life. About now you are starting to think about social media and you realize that my only social media presence is on Facebook (I got the account when I was involved in Student Ministries at our church to connect with the students now I have it for our firework business) and that my last post on Facebook was over a year ago on May 8, 2015. This is the point where I should admit that I missed my calling in life as a top secret spy because neither isolation or anonymity bother me. In fact I tend to thrive on them. Well enough stalling for now, it is time to rip this band-aid off and share what has been going on.
So, lets start by taking a step way back in time and admitting that I have had health issues since I was 15 years-old. Health issues severe enough that they drastically impacted my school attendance and warranted multiple doctor visits and a battery of tests to determine the cause. Unfortunately, doctors were unable to determine the root cause of my issue(s) and thus began taking wild guesses to label my problem (most commonly hypoglycemia), telling me that I was perfectly fine and honestly treating me like I was a hypochondriac. I would continue down this path for 20 more years seeing at least 10 different completely unrelated doctors. Never getting any answers and my health continuing to decline. In 2009 I finally got a small glimmer of hope when my OB/GYN, of all things, finally listened to my desperate cries for help and ordered some lab tests that lead to a referral to an endocrinologist. [January 2013] It took 3-1/2 years working with the endocrinologist and a lot of personal research and advocating to finally figure out that I had a thyroid disorder (Hashimoto’s Thyroiditis) and oh by the way that I have several nodules on my thyroid and that we should do an ultrasound and biopsy to check for cancer. Yes, at this point I was very angry. I had spent the last 18 years trying to get a doctor to take me and my health seriously, hoping to prevent something like this and despite my best efforts here I was terrified waiting to find out if I would have to have the same surgery and cancer treatments my Mom had just gone through just a few years earlier. The true icing on the cake was that my Mom and I had the same endocrinologist. I constantly reminded my endocrinologist that my Mom was a patient of hers and that my symptoms were similar to my Moms. Yet a thyroid issue was the last thing my endocrinologist wanted to look at as a root cause to my issues. The one thing I have learned along the way is that no one knows your body as well as you do and to always trust your gut. Never be afraid to be assertive or aggressive for your health. No doctor is going to care as much as you do because it doesn’t affect their daily life. Sorry to leave you hanging while I rant about doctors. Good news is that the nodules were benign, no cancer. My endocrinologist started me on Levothyroxine, a thyroid hormone replacement drug. I a saw a slight improvement in my health but there were still several issues that my gut told me weren’t right.
Modern Days and Modern Medicine
Fast-forward 2 years [January 2015], I still have the issues that I started having at 15, plus I have layered on top of that being morbidly obese, fatigue, constipation, forgetfulness, brain fog, dry skin/eczema and hair loss. I saw my endocrinologist and didn’t get anywhere so I decided to see my primary care doctor at the time. The appointment with my primary care doctor was awful. She not only was very condescending and treated me like a hypochondriac like so many doctors before but she also had the audacity to blame my problems on anxiety and told me that all she could do for me was refer me to a dermatologist for the eczema, prescribe antidepressants and recommend prunes for the constipation. I was in tears by the middle of the visit but thankfully I knew my situation well enough and had the presence of mind to refuse the antidepressants knowing that they were not what I needed to resolve my issues. I walked away feeling defeated and completely alone without a clue where to go or what to do. Let me interject my Google educated medical opinion here. All the symptoms I was complaining about were classic to a thyroid imbalance so why my endocrinologist didn’t see that I will never understand.
The True Turning Point
Through the wonders of the internet my Mother-in-law, Margie, found and sent me a link to an article entitled, “8 Steps to Reversing Autoimmune Disease.” Hashimoto’s Thyroiditis (the thyroid condition that I have) is an autoimmune disorder where your body turns against itself and kills off the thyroid gland. After reading the article I went about researching the author, her methods and her practice. The author was a holistic nutrition and wellness coach. After careful consideration, running it past my Mom and praying about it I figured I didn’t have anything to lose. I had literally being living the definition of insanity, “doing the same thing over and over again expecting different results,” for the last 20 years. Why not try a wildly different approach and see if I couldn’t make some real changes to my health. So, in February 2015 I reached out to Mary Vance, NC to see if she was accepting new patients, to get more information about her methods and to see if she would take my case. I had a kick the tires call with Mary on February 10, 2015 and on February 23, 2015 I had my orientation call with Mary. Starting in March I dove head long into the program Mary outlined for me; giving up dairy, all grains, soy, sugar and all caffeine. I took things to my own level of extreme by eliminating sweeteners of any kind and limiting most fruit (definitely no more than one small serving per day). She also started me on a supplement protocol to ease this transition and rebalance my system. Within days I noticed a difference. The first 8 days of the new health plan were miserable. I felt horrible. I was even more exhausted than I had been and to top it off I felt worse than before I started. I reached out to Mary and she said that it was normal and to stay the course. If I didn’t feel any better at the 2 week mark I was to let her know and she would make some adjustments. Fortunately, things evened out pretty quickly after checking in with Mary. It was all up hill from there. I started to see relief in most of my symptoms. The issues that I had experienced since I was 15 were finally gone, fatigue started to get better (but Mary did give me permission to nap when it was really necessary), the constipation started to move, my forgetfulness started to get better, my brain fog started to lift, the dry skin/eczema slowly got better, the hair loss didn’t change and I actually started to lose weight without trying. I wasn’t exercising, I wasn’t starving myself, I wasn’t counting calories, I was just eating in a new and different way and it was making my body happy. For 4 months I made progress on this health plan. I even stuck to the plan in the midst of working ridiculous hours fixing our house up to put on the market, selling our house and moving out of our house just days before we moved into the firework tent we run for two weeks each year. I was feeling better than I had in years. In fact I was starting to realize just how badly I had slowly over time come to feel.
One Step Forward Two Steps Back
In June 2015 while packing out our house, moving into my in-laws house and starting our seasonal firework business something changed. My joints in my hands randomly started to swell and ache. Now you have to realize that I jumped all in when I went on this new health plan. I stuck to it rigidly, I didn’t cheat ever, I didn’t eat out, I fixed ALL my own meals (I wouldn’t even let my husband cook for me) and I read EVERY label for anything that was going to go in my mouth. If I had the slightest question about something I wouldn’t eat it. So, I was confused as to how I could have gone from feeling the best I had in years to a new symptom appearing out of the blue. I consulted with Mary and we played around with the idea that perhaps it was something I was eating but never could definitively isolate the reaction to any one particular food.
Since I had started working with Mary in February she had been telling me, “Summer you really need to get a new endocrinologist or better yet see a naturopath.” I had been dragging my feet partly because I had a history of 20 years where doctors hadn’t been any help, partly because I was completely exhausted and had—had a lot going on (selling our house/moving/firework seasons starting), partly because I didn’t have a clue where to find a doctor that could help me in this new phase of my journey.
Finally in late July I was ready to do the leg work that was required to find a new doctor. I had been reading a couple of books that had suggested websites for finding holistic doctors for treating thyroid and Mary had provided me with a website suggestion that had worked for some of her other clients. So, I made a list of my criteria for a new doctor and decided that if I found a doctor that met all the items on my list plus was listed on the 3 different unrelated websites I had for finding doctors that I would have found the right doctor for me. After about 3 or 4 days of research I had a list of 3 doctors that seemed like possibilities. I finally isolated it down to one and took the plunge to see if they were accepting new patients and would take me. After a brief kick the tires call and what felt like a million page questionnaire I had my first appointment with my new doctor on August 13, 2015.
At first things seemed to be going well. My new doctor was very understanding and listened when I talked. She didn’t treat me like a hypochondriac. Her methods were in-line with Mary’s and she agreed to work with Mary (as I was adamant that I wasn’t going to stop seeing the one person that had helped in the last 20 years). She ran lab tests and based her decisions off hard facts along with my description of my symptoms. She switched me to a natural thyroid replacement hormone, WP Thyroid. At first I saw an improvement in my thyroid symptoms but I didn’t see any change in my joints in my hands swelling/aching. In fact the joint swelling and pain was getting worse and becoming more of a consistent not intermittent thing. We kept increasing the dose of the WP Thyroid in an attempt to eliminate my hypothyroid symptoms, which my doctor considered the joint swelling and pain to be one of. We stopped allowing the necessary time between dosage changes and doing labs on a regular basis to determine what changes should be made to my medication dose. We started making rapid fire changes to my medication doses based on weekly symptom tracker sheets I would fill out and rate my symptoms. Then all of a sudden the scales tipped and we had gone too far and increased my WP Thyroid dose too much. Then we started decreasing my dose to stop the hyperthyroid symptoms I had started having. At this point my body went into a full meltdown. We had destabilized my thyroid levels so much that my thyroid hormone levels were yo-yoing all over the place. To make life more difficult I was also on the ultra restrictive autoimmune paleo diet which meant no gluten, no grains, no legumes, no dairy, no sugar, no sweeteners of any kind, no alcohol (not even in things like vanilla extract), no nightshade vegetables (Tomatoes, Tomatillos, Eggplant, Potatoes, Goji Berries, Bell peppers, Chili peppers, Paprika, Tamales, Tomatillos, Pimentos, Cayenne, etc.), no eggs, no nuts or seeds (not even spice derived from nuts or seeds), no fruit, no food additives like carrageenan, and no NSAIDs (non-steroidal anti-inflammatory medications, e.g. Advil). My joint pain was through the roof and migrated from just my hands to my shoulders, wrists, elbows, hips, knees, ankles and toes. Most mornings I would wake up I couldn’t hardly get out of bed. I would limp the 12 feet from my bed to the bathroom hunched over unable to stand up straight. I had lost almost all grip in my hands and the ability to do the simplest tasks I had been taking for granted like tying my shoes, buckling a belt, using a pen to write and typing on a computer. I would roll onto one of my shoulders during the night and the pain would wake me up. Sometimes the pain would be so great when I would roll on a shoulder during the night that I would actually cry out in pain and wake Steve (my husband) and I both up. I stopped getting full uninterrupted nights of sleep because the pain wouldn’t allow me to sleep for more than a couple of hours at a time.
I kept saying to my doctor that I was concerned that things weren’t right and that it was more than a thyroid issue. She kept reassuring me that it was thyroid related and that we just needed to get my thyroid levels stabilized and the joint pain would go away. I had started to get the feeling that this doctor was a great first step in moving away from my endocrinologist but that she was going to be a small part of my journey and then I would move on.
In late January 2016 I reached back out to Mary, I had not been working directly with her for the last few months so as not to confuse things and allow my doctor to call the shots. At this point I felt like it was time to invite an educated second set of eyes to look things over and give me their opinion. Mary had me do some labs and it took a while to get those results back. Finally on March 23, 2016 I consulted with Mary about my current labs and how I was feeling. Mary recommended that I actually discontinue the autoimmune paleo diet and just go back to a more traditional paleo diet but that I still continue to avoid nightshades (Tomatoes, Tomatillos, Eggplant, Potatoes, Goji Berries, Bell peppers, Chili peppers, Paprika, Tamales, Tomatillos, Pimentos, Cayenne, etc.) as they can contribute to inflammation and joint pain. We also agreed that I should avoid almonds as I seem to be sensitive to them. I point-blank asked Mary if she thought I should seek out another doctor. She was very politically correct in her response that although there were some red flags in my treatment that I should go with my gut. My gut had been telling me it was time to make the leap yet again. I talked the decision over with my husband (Steve) and decided that I would give the doctor he had been seeing since November 2015 a try. So, 2 weeks before we flew to Florida/Alabama for a month I called his doctor’s office and had them run some thyroid labs and got an appointment to see the doctor 2 days before we flew out. The doctor changed my thyroid medication to Armour and increased the dose slightly based on the lab results and my description of my current symptoms. He made a few supplement changes and suggested one other medication for me to take to hopefully help get me some relief.
Test Trip and the Day the Dream Died
On April 6, 2016 we flew across the country to Florida to visit Steve’s brother, his fiancé and our nieces. This was to be a trial run to see how working remotely would go and how I would cope with traveling given my current health status. It was a challenge. The almost 13 hours of travel that it took to get to Orlando, Florida that day was grueling. I am a short person (5′ 4″) but the cramped flight across the country was miserable given my joint pain, swelling and stiffness. Eating in airports and planes is very difficult when you are on a restricted diet. We packed snacks but I didn’t get a decent meal all day long. By the time we were in Florida all I wanted to do was eat some meat and vegetables. We decided that we would stop at a restaurant on the way to Steve’s brother’s house. I explained to the waitress that I was gluten and dairy free and she honestly was fairly educated and had the proper tools to be able to tell me which menu items would work and which we could easily modify to work. It never ceases to amaze me how many things contain gluten and dairy. Things you would never expect like spice mixes. News flash folks, things like taco seasoning should not contain gluten or dairy. Taco seasoning should contain: chili powder, garlic powder, onion powder, cayenne, oregano, paprika, cumin and salt. We finally got my meat and veggie order customized not to include any dairy or gluten. I ate my meal and we traveled on to our final destination that night. I don’t know if I got some trace amounts of gluten, dairy or something else I could be sensitive to that night or if my body was just reacting to the unnatural act of flying at 30,000+ feet for almost 9 hours but the next few days were near torture. I slept horribly because the pain was so bad. I woke up multiple times a night or was up most of the night due to the pain. I could barely move in the mornings. Sunday morning, 4 days after arriving, while getting ready for church I had to have Steve help me put shoes on as tears streamed down my face. I opted for my comfortable Nike running shoes that morning instead of my new super cute peep toe heels. My feet were so swollen that I could barely get my shoes tied. I walked with a limp that morning and couldn’t stand in church to sing even. I had—had doubts before this moment that I could travel South America for 11 months without the support of a doctor and first world medicine while getting to see all the sites and immerse myself in the cultures that we would be living amongst but this is honestly the moment when the dream died for me. How could I travel to another country so far outside my comfort zone where I don’t even speak the language and expect to survive? I just couldn’t. I was going to get robbed of this opportunity by my health. Yet again a moment of anger at every doctor along the way that hadn’t taken me seriously and who had treated my like a hypochondriac. I wished that they could literally walk a day in my shoes. Feel the misery that I was feeling. Have it impact their lives as it was impacting mine. Rob them of their youth. After all I was only 37 years old. I wasn’t supposed to feel like this for at least another 20 to 25 years. I pushed through our trip because that is the determination that is in the core of my being. I even helped move my brother-in-law out of his apartment, clean his apartment and helped he and his fiancé move into their new home. I helped them unpack and settle in so that when the rest of their friends and family came right before the wedding their house would be ready to receive their guests. After my brother-in-law and new sister-in-law’s wedding on April 23 we (my husband & I and my father & mother-in-law) piled into a Chrysler 200 for 6 hours and drove to Alabama to visit family there for the next 10 days. The one rest stop we made along the way emphasized how my body was handling all the travel. I could hardly get out of the car, when I finally managed to get out of the car I couldn’t even stand up straight or walk without limping. This was easily one of the largest roadside rest stops I had ever stopped at and you had to park a good distance from the restrooms. As I limped to the restrooms I drew the attention of everyone around me. I tried to ignore as people stared at me limping along hunched over but I couldn’t. It was obvious that they were wondering what was wrong with what seemed like a relatively young person, they couldn’t easily explain away what was wrong with me either. You know when you see someone walking with a cast on you explain away easily why they aren’t walking normally. Upon observation there was no logical explanation why I couldn’t walk normally. Was I just one of those overly dramatic people that like the attention? The answer was no. If I could have forced myself to walk upright and without a limp and not draw attention I would have but that wasn’t an option for me that day. It wasn’t any better when we arrived at Steve’s Grandparent’s house a few hours later. Everyone else piled out of the car and grabed a few items as they went. They all walked into the house and closed the door behind them because the reality was that I would be several minutes behind them. When I finally got out of the car and limped to the front door there stood Steve’s Grandma completely baffled as to what was going on. She even commented that I looked as bad as her. She couldn’t believe how badly I was limping or how slowly I was moving. It was confirmed, there was no way I could travel for a solid day to get to South America then expect myself to live out of a suitcase for 11 months moving weekly to see as much of the countries we would be visiting as we could. I just couldn’t bring myself to say the words out loud to Steve.
New Doctor, New Tactic
We got back home May 4, 2016 and 2 days later on May 6 I had an appointment with my new doctor whom I had seen just 2 days before leaving for Florida/Alabama. It was time to let my new doctor do his thing and take a crack at my list of symptoms and try to figure out the root cause. We had the complete lab results back from the tests he had run before we left and now he wanted to run several more tests to check for latent viruses, rheumatoid arthritis and Lyme disease. Honestly after talking with Mary and doing a bunch of my own research these were all things I was glad he was wanting to test for but also not tests that I wanted to come back positive. On July 8 I had an appointment to see what the tests revealed. It turned out that I had two latent viruses that were running rampant in my body, I have rheumatoid arthritis and fortunately I didn’t have Lyme disease. I have started treatment for the viruses and a new protocol to help the inflammation and address the rheumatoid arthritis. I will see my doctor again in 6 weeks on August 19 to check in on my progress. We will see then if this South America trip is a possibility some time in the next year or not.