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Tuesday, August 30, 2016

Fighting Chronic Disease - My Story

It was 2012, early spring, and I had just returned to the desert town of Moab, Utah from a brief hiatus from the small town life. Moab is an incredible place if you love adventure but being only about 5,000 people or so it get's overwhelming at times, your typical small town drama. I had decided to take about a 6 month break and spent some time in the Denver/Boulder, Colorado area with some friends. Upon returning to the desert I started to notice that I was much more fatigued than usual but blew it off thinking I might just have a bug or something. Weeks and weeks went by and not only was I fatigued but I began to have severe cramping in my shoulder blades; I found myself constantly asking friends for shoulder rubs (and thank you for obliging, by the way). One episode was so extreme that I was actually brought to the ground and begged my friend to please just make the cramping stop. I prayed that he may actually have magical powers and could perhaps suck the pain right out of me; unfortunately he was not magical. It was so debilitating that I could hardly breathe. We had driven about an hour out of Moab and were preparing for a long hike to rig a highline but I was completely incapable of continuing. What's interesting is this was not my first experience with being brought to he ground by muscle cramps. I had had these cramps before, many years prior. My first "back spasm", as I have come to call them, was in 2008 in my college dorm room in North Carolina. At that time I was brought in an ambulance to the hospital because the spasm had lasted over 5 hours and I literally could not get off the floor of my room. That posed a problem for the EMT's as they didn't know how to get me out of the second floor dorm room. I ended up crawling slowly to the chair and they carried me down the stairs in a seated position. For those of you that have never had a back spasm, it is not minor. The muscles tense up so tightly that it actually pulls muscles from back, your sides and even your chest. It felt like the air was being squeezed right out of my lungs. Any move that I made triggered even more tightening of the muscles. At the hospital the doctor reluctantly gave me a muscle relaxant shot (right in the bum), some pain killers and more muscle relaxants to take home. I could tell, though, that he wasn't quite sure I was telling the truth about my pain. He had this look in his eye that perhaps I was a drug addict just begging for more.

The thing is, I'm actually a very strong person and can typically handle a lot of pain. I think I inherited this trait from my father who brought me up as an athlete, having me on ice hockey skates at age 3 and on an all boys team by age 7. I have always been a tom boy and someone who refuses to go down easily. But this was different. Not only was I having fatigue and spasms but an array of other symptoms began to rear their ugly heads; I started to keep track of them all. There were so many symptoms at one point that I felt silly even telling the doctors about all of them. I'm sure that some people in my life thought I was a hypochondriac, thinking something was very wrong with me when it wasn't, and that was one of the hardest things to deal with. I felt very alone. As many doctors as I saw, as many emergency room visits as I made, not one person seemed to care enough or believe me enough to look deeper into the issue. My symptoms ranged from periodic nausea, dizziness, repeated infections, muscle and joint pain, sensitivity to light, heart palpitations, chest pain, achey body and eventually severe anxiety and depression. I couldn't seem to find someone that would help me investigate this so I decided to begin my own investigation.

I started doing research day in and day out. I think I started to worry my boyfriend (now husband) as I was constantly on the internet reading article after article about this disease and that disease. Each symptom that I had related to so many different illnesses that it was difficult to narrow it down. I went from one minute thinking I had Lupus to another thinking I had Multiple Sclerosis or Fibromyalgia or Chronic Fatigue Syndrome. So many diseases and so many symptoms my brain was mush after a while. At this point I had made so many doctor's visits that I think I gave up on that approach. I started to monitor my own health daily and at least try to manage the symptoms the best that I could. I started to notice what foods made my symptoms worse and about 3 years into it I figured out a pretty good system for myself. Very low carbs, very low sugar and hardly any alcohol. Those were the three things that effected me the most. Although I had it somewhat under control, I still felt somewhat helpless. What was wrong with me? Yes, I was managing the symptoms and was able to function on a daily basis, but not without discomfort and always having in the back of my mind this mystery illness. Not to mention my three vices happened to be what made me feel worse; I just wanted to be normal and go out for a drink with friends without suffering the consequences.

Eventually I went to see a new doctor in Arizona where my husband and I had moved for a basic check up. I explained to her casually what I had been through and that something was wrong but I didn't know what. This time I wasn't desperate for answers; this time I went in there with no expectations as I had lost hope when it came the medical field. Despite my attitude, I have to say, this Nurse Practitioner was the first medical professional to actually take the time and listen to me. She made eye contact. She asked me questions. She wrote everything down. I could see in her eyes that she was actually quite concerned and even curious about what might be wrong. We did many tests and labs, as many as I could afford, and nothing seemed out of the ordinary. My liver was fine, my kidneys were fine, I didn't have diabetes, my blood tests were normal. Nothing was coming up. Defeated once again I felt like maybe I just needed to accept that I would never know. Perhaps not knowing was my reality.

As defeated as I was I felt like I was getting closer and closer to figuring out this mystery. Having tests that came out normal actually gave me more to work with; the process of elimination. One thing that had really stood out to me over the years was my sudden intolerance to alcohol. I had always been able to drink previously with no issue (other than some swelling in my hands and feet which is something a lot of my family members experience). But now, it made all of my symptoms worse the next morning and my hangovers were intolerable. My whole body would actually ache, my muscles and even my skin would ache. I know that sounds strange but it felt like a full body bruise. I started to research this and I came across an article that had something to do with how Lyme Disease patients struggle to process alcohol and it can actually feed the Lyme Bacteria, in turn making symptoms worse. It was like a light bulb went off. This was the first article I had read that seemed to point me in the right direction. A lot of other things during my research had made sense to me in the past but I had never found anything this specific to a symptom I was having. At my next doctor's visit I was getting more lab's done and last minute I asked if they could add on the Lyme Disease test. The phlebotomist checked and said that would be no problem. I was excited. Perhaps this was it? Would I finally have my answer? A week later I went back in to go over my results. "So everything looks totally normal here", as she scrolled down the lab report, "Everything is fine on these tests. It seems like you're blood sugars are normal, you're liver enzymes...wait a minute, what's this. Emily, your Lyme test is positive."

I went home that day in disbelief; still to this day I have a hard time believing that I actually know what is wrong with me. I have Lyme Disease. I have to repeat that to myself over and over again. I have Lyme Disease. I got so used to researching and not knowing that my brain doesn't seem to comprehend that there is no more searching to be done. It is time to heal now. But, unfortunately, healing from Lyme Disease is not that simple.

In your ideal Lyme Disease case, which many of you may be familiar with, the patient discovers a tick on their body followed by a circular red rash that is very distinct. This then develops into flu like symptoms and then, hopefully, a doctor's visit. Antibiotics are administered and then most patients go  back to their normal lives. In your not so ideal case, which many people are unaware of, the patient does not realize they have been bit by a tick, does not develop the typical rash and develops flu like symptoms which are then treated as just that: the flu. If the patient does not get treated with antibiotics right away the Lyme bacteria have time to spread into the body: the muscles, the joints and in more severe cases the nervous system and the brain.

My case is the not so ideal one. I don't exactly know when I contracted the disease. I did grow up in New England and was born 60 miles from Lyme, Connecticut where the disease was originally discovered (and is rumored to actually be a bioweapon created by man, which is a whole different blog post alltogether). My Mother says that when I was 3 years old I had a very large tick on my neck but I never developed a rash or exhibited any symptoms at that time. In high school I have vague memories of being in contact with ticks but have no specific memorable events. All in all, I don't know when I contracted the disease but I do know when I started to develop symptoms. Some doctor's theorize that the human body can manage/fight the bacteria up until a certain trigger event, whether that event is the onset of an additional virus or extreme amounts of stress, either one can produce the onset of symptoms. Whatever the case, it seems that the typical Lyme story is not applicable to in all cases. The diseases has also been nicknamed "The Great Imitator" due to it's resembling many other illnesses. To top that off, the bacteria of Lyme Disease comes with "co-infections": infections that it travels with, like friends or buddies, or pals. These multiple bacteria strains live together in a bio-film, a protective casing, which render it un-detectable, protected from harm, and very difficult to diagnose.

I never imagined that I would be affected by chronic illness. Having always been a healthy and active person I feel somewhat blindsided by all of it. Life seems to do that, doesn't it. On minute you're walking highlines across the desert canyons and the next you're chronically ill. On the bright side, I am not one to give up. My father not only trained me as an athlete but he also taught me to keep pushing forward, no matter the circumstances. This will not take me down. As difficult as walking highlines once was for me it does not compare to the challenge this disease has presented. I thought I had reached my peak when it came to challenges, I thought I had done the hardest thing I could do, but I was very very wrong.

My life now is very different than it once was. I am still the same person with the same adventurous spirit but I am limited by how I feel. Some days I feel great and am up for a long hike or rock climbing or anything fun. Other days I am fatigued and achey and don't want to get off the couch. This is not only hard for me but it is also hard for those around me to understand. I think it's hard for people to truly understand the disease and that every day is different. I find myself feeling lazy on the days I can't get up. I blame myself for not pushing through it. This is something that I am working on. I don't want to feel guilty for how I feel and right now that is one of my challenges.

Treatment also effects the way I feel. Right now I am taking various dietary supplements, monitoring my daily diet, seeing a naturopathic doctor here in Flagstaff and undergoing Ozone Therapy. Lyme Disease thrives in low oxygen environments therefore by infusing the blood with oxygen it creates an environment that the diseases no longer thrives. You may be thinking, "But we breathe oxygen everyday, right?" Well yes. But, our bodies can only access a limited amount. By infusing the blood with even more oxygen it really kicks this disease in the butt. When the bacteria dies, it emits toxins into the body which cause what is referred to as a "Herxheimer Reaction" or "Die off". The toxins make you're usual symptoms much, much worse. It's the "feel worse before you feel better" idea. As I delve into the healing process I am so grateful for those that support me and love me. I thank you. I also thank you for taking the time to read this and perhaps gain more understanding not only into my story but into the story of all "Lymies" out there going through the same thing. Until next time, onward and upward. Through the challenges we blaze, as without them life is meaningless.

(If you are interested in learning more about Lyme Disease, the website that I have found to be the most useful is