Putting the Puzzle Pieces Together

Most people dealing with Autoimmune issues want the ultimate fix.  I started this journey with the same mindset. What is the “fix”? Is there a fix? I can tell you that I have come to the realization that this is one giant size autoimmune puzzle. Years ago, I began compiling those pieces and will continue to see where they fit in the big picture.

Believe it or not the puzzle pieces date back way before the diagnosis.

Were you a C-section baby? (I was not) Did your mother nurse you? (mine did not)

A large part of my childhood was spent growing up on a farm. Most of it was great! I was an outdoorsy kid who enjoyed gardening, working in the barn, and helping in the fields. What years of my childhood were impacted by the chemicals introduced by pesticides in the farming process? Did milk from Holstein cows impact my health? We now know that dairy is not healthy for us, especially milk from Holstein cows. I have a very “dairy supportive” family, therefore this is not a popular opinion for me to voice.  A better choice for me would be goat and sheep dairy or A2 milk, that comes from 100% Jersey cows.

What about childhood situations and stress? Childhood illness? Doctor and Dentists who did not practice safe procedures or even knew what was being done in those years was harmful. Family heath history?

You get the idea that this illness is a giant puzzle with different shaped pieces for everyone.

I get contacted by several people a month asking me what worked for me? How did I heal? What is the secret? I need to address that this has been a process. A continuous learning process at that. Would I do things different if I could? Yes probably. But had I not tried all the different treatments and physicians; I truly believe I would not be where I am today.

One of the most important pieces to this puzzle is YOU! You must be your own advocate. For 5 years I trusted a single medical professional to give me the answers to what was going on with my health.  Not only did I have 5 years of continued damage to my body, but the 15-minute appointments, misread bloodwork, and my denied requests for further testing by this professional all adds up to a permanent damage. I needed to demand testing and demand this person would hear me. In the end I have realized that I should have moved on to get a second and third opinion earlier than I did.  

I finally did move on after 5 years, but the fight in me was almost depleted. My next appointment was with a new Doctor at a clinic through the Medical College of Wisconsin. I must admit I miss him so much. He moved on to a different area shortly after my diagnosis. He listened to me and spent so much time with me. He also explored other areas to test. I truly believe because he was brand new, and just starting his practice, he gave me extra care. He referred me to a specialist at the main hospital. I started seeing a Rheumatologist, but first had to go through a neurologist for my Electromyography (EMG) and my muscle biopsy. After all of this, I was given a diagnosis and I began starting handfuls of medication to manage this disease.  I was told there is no cure. I was not getting old or imagining I was ill, another piece to the puzzle.

My husband took me to those first appointments, but after a few weeks he stayed at work and I drove myself an hour one way to all my appointments. I had to go every two weeks for a while because they needed to do blood work to monitor the side effects of all the drugs. It was so hard for me and frankly lonely. I did have my daughters go with me occasionally because there was so much extra testing that had to be done. Had this disease affected my organs yet? I had every scan and ultrasound test available done. I was so weak and in pain. I remember parking my car in the large parking ramp and then having to walk a long way to get to my appointment. In the winter I was even more miserable. The nurse often had to bring me a warm blanket because my Raynaud’s was so bad.

I have always been a fighter, often fighting silently and on my own. I guess being an oldest child might be why. Birth order is part of developing your personality. Even before I was ill, I rarely took meds. I took a Tylenol or Ibuprofen 1-2 times a year, if that. I was not happy with all the medication I was taking. They had to switch me from Methotrexate to Mycophenolate because it was causing liver damage. I was on prednisone for 8 months and it was a terrible experience for me. Now don’t get me wrong, these meds were necessary for me in the beginning. They did help slow the attack down, and I did start to feel better. But I just kept thinking there had to be a better way! Our health just does not decline for no reason. There must be a source of why this illness was impacting me. I was bound and determined to start my journey to heal.

I think people who have heard my interviews or see my Facebook or Instagram page think I am “cured”, and they think this happened with a diet, a program or one doctor, and life is wonderful.  My puzzle is not yet complete, I am not cured! I have many pieces to add. But what I have done through Integrative and naturopathic physicians, wellness clinics, diet changes, and more has been a wonderful and blessed journey. There is not one answer, or one magic pill. This is not a disease that once you think you’re in remission you can forget about how you got it under control. This is a lifelong fight!  

When my specialist said to me that there is no known reason for Autoimmune disease and she has no idea why or how I got this illness, I now know that the traditional medical community is refusing to acknowledge all of the studies and work that has been done proving them wrong. There is a source to this condition. We have been living in a very toxic environment for decades. Our food sources have been altered and tainted. Our air, soil and homes are full of toxins. The technology we use every day might also impact us negatively. We have so much stress in our lives.  Bad or good, stress is stress and it effects our health.  Our bodies are on a virus overload. Lyme, Epstein Barr Virus, Herpes, parasite’s and mold illness are just a few. We have thyroid and hormone issues. We are lacking in Vitamin D, Ferritin and B12. We have developed intolerances to food, and everyone seems to have allergies. We have been exposed to heavy metals. Cancer is still on the rise, even after pumping millions of dollars into research. Our bodies are set up to be able to handle these things, but not when there is so much that it is overloaded and gets confused and starts attacking its own healthy cells. We no longer rely on our Creator in our daily lives. Faith is a huge part of healing. I believe that Christ is the ultimate healer.

I look back on how much I have healed, and I am very thankful. It has been a lot of time and money invested along with a lot of hard work and dedication. I am still spending a lot of time and money to try and maintain my health. My CPK (creatine phosphokinase) is like a yo yo. I have managed to be off my immunosuppressive drugs now for 10 months. I am very active overall and live a fairly “normal” life relative to how I was prior to being very sick. I have good days and bad days and continue to be treated with alternative medicine.  My puzzle is far from complete, but this journey has been incredible. I learn something new every day, and I have come to realize that my time, money and hard work is now helping others who are in the same position I was in not so long ago. I sure wish I had someone to help guide and support me at that time, therefore I feel called to be that person for so many who are ill and frightened with such a terrible condition.