I question why I am sharing this very personal information with you because I don't want my identity to be synonymous with my "illness." On the other hand, when I was searching out ways to help heal my body, the sources with the most credibility in my eyes (and thus, the most helpful for me), were those people who walked this path before me; who empathized with what I was going through; who wanted to help because they had been there.
I guess that's my answer then... I want you to know that I speak and write from a place of understanding and desire to help you experience wellness in a way that allows you to do what you are on this earth to do.
Following are brief snip-it's (good thing they're brief, becasue this is still a long section) of events on my health timeline and by no means define my life, which has (and continues to be) been full of grace, blessings, achievements, love and of course, like everyone, pain, loss and hardship...
In hindsight, I have learned that childhood illnesses, infections and environment impacted my health in ways that I didn't understand until this year. For instance, recurring bouts of tonsillitis resulting in having them removed (as many children in my generation did), the herpes simplex virus which causes cold sores (and canker sores?), the Epstein-Barr Virus that set off a severe case of mononucleosis, exposure to ticks from growing up on the east coast, chronic stress and so on. I was hospitalized as a child a couple of times, but I'm not really sure why other than they told me I was anemic and had a heart murmur.
I had gastrointestinal issues from the age of 18 or so, that included ulcers, heartburn and just lots of pain. I should also mention that my cycles were monumentally heavy and painful, requiring me to take off from school and work often.
God has blessed my husband and me with three wonderful children! Born 1989, 1993 and 1999. All had jaundice. My first was the most difficult delivery and was the sickest when she was an infant. My third was the easiest delivery (he practically walked out and I had 2 turkey sandwiches right after ;)) and the easiest, most healthy infant.
Around age 30, I remember feeling like something just wasn't right. I wondered if everyone had painful joints, hormone fluctuations and "sensitive stomach" issues. I sought medical attention and received vague answers - maybe because my symptoms were vague and often dismissed with, "you have kids, you're busy, you're stressed, it's your hormones, you're getting older..." Ugh! When in the history of ever, have any of those been satisfactory answers?? I digress...
At that time (age 30-ish), I was told by a rheumatologist that my x-rays looked like that of a 50 year-old and that there was nothing I or they could do about it - it's "just degenerative arthritis." There I stood, holding my 4 month-old with my 4 year-old hugging my leg, thinking that I'd be in a wheelchair before they were in grade school.
By age 40-ish, I figured I'd better get this hormone thing checked out so, off I went in search of someone to help. The term Guinea Pig comes to mind. We tried all manner of hormones; synthetic, bio-identical, over-the-counter... I just had to stop the madness because the side effects, including painful cystic acne, were more than I wanted to bear. After all, I came here to feel better, not worse.
I had severe gall bladder attacks in 2005, had it removed and developed an infection that required an emergency hospital admission. I took several months to heal from this with the help of a chiropractor/kinesiologist in my area. He gave me a detox/healing protocol and helped me regain my health.
Somewhere in my forties I found out that "my thyroid was low." I was put on synthroid and sent on my way. I know now that the testing was insufficient and didn't show the real story of my thyroid that was Hashimoto's thyroiditis.
Cancer! At age 43, with no family history, I was told I had breast cancer (following skin cancer just 2 months earlier). On July 31, 2006, I was "healthy" and on August 1, I was a cancer patient. Crazy! After a myriad of tests and a triple lumpectomy, I had a modified, right mastectomy with an immediate TRAM flap reconstruction that October, with one other surgery in March 2007. Two weeks post-op, we moved into a new house. My mother died tragically that same year in August, which was followed by a extremely stressful, year and- 1/2 lawsuit, handled exclusively by my brother and myself. That year between August and November, our family experienced 11 deaths!
In my late forties I became very physically active in martial arts with my sons, to help regain my strength after cancer recovery. I also loved doing Zumba with my daughter. My knees began really bothering me as did my low back. I always had neck pain, but had learned to live with it. After looking at my knee MRI's and hearing my joint pain history, my orthopedic ordered blood tests which revealed that I had the HLA-B27 gene, that is indicated in ankylosing spondylitis, one of several types of inflammatory arthritis.
All this time, I knew I should be feeling better, that life just shouldn't be this hard, but conventional medicine offered nothing more than trite answers and prescriptions. I always felt like my immune system just wasn't strong enough and that my body interpreted everything as an attack or stressor. t felt kind of hopeless.
The Beginning of the Beginning...
On my 50th birthday in July of 2013, I felt stronger than I ever had in my life. Then in September, I sustained a pretty painful shoulder injury while training for my black belt. I know now that I was seriously over training. By October, the pain was constant. My muscles weren't healing from the high level of training and stress, my adrenals and thyroid were tanking, I felt depleted and I began rapidly declining. I should have stopped but I didn't. I was so close to achieving my goal of becoming a black belt by age 50, that I became laser focused and pushed through the pain. In November, I passed my test (no easy task, I might add) and received my black belt... at the expense of my health and well-being. The day after the test, I could feel my body falling apart - it was a scary feeling. However, I continued to train, barely able to lift my arm because of the shoulder pain. On the drive home from training, my joints would feel like cement hardening. I felt like I was 90 limping out of the car and into the house.
Therapy for my shoulder wasn't helping and the pain was increasing. The first orthopedic I saw said it was nothing and quipped, "well, we are 50..." Excuse me? Is that your official diagnosis? Thankfully I did see another orthopedic who did an MRI and discovered a rather large, full-thickness rotator cuff tear with AC joint dysfunction (yes, I was training, and I tested with this injury). I know now that the injury was the catalyst behind the eventual auto-immune flare. Metaphorically speaking, I crawled into the shoulder surgery on May 15, 2014 with every last amount of energy I could muster. When I think that I wrote and released my book the month prior, I am amazed, but then again, I see now that I wasn't at my best and my work that year suffered.
So... 2014... extensive surgery in an already compromised state: rotator cuff repair, AC joint reconstruction, off the charts pain, 17 weeks of therapy, the illness and sudden death of my father, handling his affairs including memorial, packing, fixing and selling his home (with my brother, his wife, my son and my husband)... My shoulder just wouldn't heal and I developed adhesive capsulitis and significant inflammation. I also underwent uterine surgery in October to remove a suspicious mass (benign!). I wasn't thinking clearly, I was in a lot of pain, my stomach was a mess, I was thinking that I should be better by now, so I just stated trying to do things, but I couldn't keep up. I would have a good day or 2 and then be down for 3-5.
I saw a doctor who specializes in the gut-brain connection who tested me for all kinds of things. Findings: gluten sensitivity, leaky gut, gut dysbiosis, Epstein-Barr, Mycoplasma pneumonia, elevated liver enzymes, candidiasis and some other things. Eliminating gluten relieved some of the brain fog, but the herbal remedies made me very sick. In December, on top of everything else, I had diarrhea for 22 days, (seriously?) which led me to a gastroenterologist, resulting in a colonoscopy and endoscopy 2 days before Christmas. Findings: Barrett's Esophagus, 3 polyps removed and inflammation.
January of 2015 revealed inflammatory findings in my SI joint, a "heart event" that really wasn't and some much needed reprieve on a family trip to California. This is also when I began to do some research on auto-immune diseases. While they are all different, most have the common thread of some degree of gut dysfunction, inflammation and years of misdiagnosis. Also common among them is success in reversing them with diet and lifestyle changes. That is what led me to learn about the auto-immune Paleo protocol. I was in a very bad flare from October to February and I never want to go back there! I have felt well for about 3 weeks now - consistently! That's the longest time of feeling well in a year and a half. I feel like I can plan things for next month without worrying that I might have a flare and not be able to meet my obligations. I told my family this weekend that I feel like I was (mostly) dead and now I'm alive. My brain is working and ideas are flowing. I have energy and hope! I have apologized to friends for all of 2014 and asked them to please not hold anything I said, did, canceled, wigged out on, etc. against me. I was really sick and I am just now realizing how sick I was. I'll post later about what it actually felt like to live through it. I'm sure many folks with auto immune disease or other chronic illness will relate.
The reality is, however, that auto-immune disease isn't curable, but it is reversible and manageable with diet and lifestyle changes. Therein lies the challenge... With all this energy, I want to make up for lost time and change the world. But what is my greatest enemy? Stress! That means, eating poorly, staying up too late, working too much, not doing things I love, over-exercising and over-committing can derail my health in a New York minute. Where I used to be able to spend an entire afternoon shopping or visiting with friends, I now have to limit myself to 1 or 2 hours. Exercise looks very different now too. It took me weeks to be able to complete an eccentrics class and not take 4 days to recover. I can gently engage in martial arts. I am thankful to be able to take a walk and not have pain. All of these things are on a small scale. I may never return to the level of martial arts I was at before, but that's ok - and that's the key... accepting that this is the new normal and I may have to do things differently for my healths sake.
I hope this (very lengthy) post helps you in some way. I am not an expert and I am not "all better" yet, but I am getting there little by little, and you can too!
Live well and God bless you as you head toward wellness.
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