I am a forty-two year old, Jesus loving, healthy eating, four boy having girl married to a modern-day knight. (He married a girl with three sons. Enough said.) I was a healthy and active child and young adult, but now my body no longer functions the way God intended it to. I have been dealing with a host of autoimmune joint and skin issues for several years now. It has affected not only me and the way I live, but my husband, my kids, my family, my friends, and my relationship with God.
At the end of each day, through the good, the bad and the ugly, I hope that I have honored our Creator in some way. It’s quite a ride sometimes, but in the process, I enjoy the sweetest intimacy and love I have ever known through my relationship with Him. Only He knows what I truly feel.
I am a stay at home mom. We call Texas home. I was not born here and I did not get here as fast as I could as some people here say, but it’s a wonderful place to be for now. I am the oldest daughter of parents who have loved and supported me from day one and I have the sweetest sister on the planet. I feel blessed.
My escape from the madness of disease is my love of all things artistic and creative–cooking, decorating, gardening, and anything interior design related makes my heart swoon. Thankfully, these are a few things my disease hasn’t rob me the pleasure of. I can’t say the same about working out (boohoo), eating out (booohoooo) and getting out and about.
Growing up, I considered myself healthy. I didn’t get sick very often, I was always physically fit and involved in various sports. I went on to have four healthy babies (all by c-section) and always shocked the nurses with how quickly I recovered from each surgery.
But now, I have to work really hard to barely keep my immune system above water. What I put in and on my body is a huge factor. Clean food. Clean products. Critical! I’m always thinking about food and what my family will eat. My Doctor of Naturopathy and Dietician said they threw the book at me and the disease still didn’t budge. I have done so many detox and elimination diets in the past six years that I’ve lost track. I do them from time to time to help cleanse and reset things. I have given up a lot of things I once loved to eat and cook everything from scratch, my supplement list is extensive, I see a chiropractor every 5-6 weeks, I exercise, I take antibiotics twice a day, everyday, for years now, I see my rheumatologist and have blood work done every three months, just to maintain some semblance of my former health.
I was first diagnosed with rheumatoid arthritis is 2009 and was then diagnosed with psoriatic arthritis in 2010. I have also had ankylosing spondylitis written next to my name as a possibility. Looking back, there were a couple of clues regarding my health. One thing that was persistent and never quite right was my skin. It started to break out painfully in first grade. It persisted into my adult years, even though dermatologists always told me growing up that it would subside as I got older. It never did and I battle it constantly. I have gone through a host of dermatologists and acne drugs, including the uber toxic drug accutane and have done a multitude of cleanses, elimination diets, and have tried just about every natural product under the sun.
It wasn’t until I gave up eating grains as an adult trying to combat an inflammatory arthritis that my skin improved dramatically. It’s pretty remarkable. Not once did a doctor ever mention that it could be something in my diet. It was always, try this drug and if it doesn’t work, try this one. I tried them all to no avail. I’ve since discovered that acne is listed as a symptom of psoriatic arthritis. Super interesting to me considering that psoriatic arthritis is now next to my name in my medical chart.
I also consistently got ear infections growing up. They persisted into my adulthood and seemed to get worse and more painful right up until the time I began to notice joint pain. I also had a case of strep throat when I was in high school that caused the doctor to call the other medical practitioners to come and look into my mouth to see how bad my case was. I often wonder what this left behind to manifest in me.
When I think about when my joints began noticeably going south, it goes back to 2006 when I began to experience pain in my neck that I knew was not normal. My wrists and right collar-bone were also beginning to hurt and my hands would often fall asleep. It caused me to seek out a doctor. The doctor referred me to occupational therapy for my neck (I went) and said it was probably just sore muscles, never ordered x-rays, told me to pick up carpal tunnel wrist bands at the drug store (I did) and wrote me off as a stressed mother. Fast forward five years, multiple mentions of neck pain to different doctors, requests for x-rays, and eventually a desperate plea for an MRI when I suddenly couldn’t move without jolting pain shooting through my body and I found myself on the phone with the emergency room. An MRI revealed a large bulging disc pressing on my spinal cord and my neurosurgeon said surgery involving implanting an artificial disc in my neck and a plate and large screws was necessary. My rheumatologist was sympathetic and surprised when he read the report.
Next health oddity was in 2007. The thumb on my left-hand became swollen, extremely painful and difficult to bend. I’m left handed. I sought out a hand surgeon for this. My primary care physician had already written me off as stressed. I wanted a specialist of some kind and it was the only place I could think to start. He was baffled, asked me more than once if I was sure I hadn’t jammed my hand, gave me a steroid injection in my thumb (Oh. My. God. Never again.) and sent me on my way.
Then came my feet. I distinctly remember my feet first starting to hurt in ways they had never hurt on my honeymoon. It was easy to write this off in my mind at the time because we were doing a ton of walking and I wasn’t wearing what you might consider ideal shoes for walking long distances. But then came severe heel pain. The bones in my heels felt as if a hammer had been taken to them. I was working out regularly on my feet at the time and wrote this off as a footwear issue as well. Finally, I sought out a podiatrist. X-rays looked fine and I was told it was probably plantar fasciitis. I was pregnant with my fourth baby at the time. I followed up by doing the stretches, rolling my feet on tennis balls and ice water bottles to no avail. I had no choice but to quit working out entirely because it became too painful. This broke my heart, but I considered it temporary.
It wasn’t until I went to my hand surgeon a second time after the birth of my fourth baby in 2009 with the pinky on my right hand swollen and painful that I was referred to a rheumatologist. This is when I sort of freaked out. My first and former rheumatologist (who looked straight out of medical school) told me it looked like I had rheumatoid arthritis at my first visit. I walked out with with drug information handouts, a pit in my stomach and a follow-up appointment.
It was after the birth of my fourth baby that my body (my immune system) never truly felt the same again. It wasn’t too long after the birth that I came down with a painful kidney infection and had issues with mastitis over and over again in the months that followed. And then, a couple of toes swelled to twice their size and became extremely painful.
The only option and suggestion I was given by my rheumatologist at the time was to act fast with drugs–the heavier, the better. I was breast-feeding my fourth baby at the time and it was extremely important to me to continue doing so. I also consulted with my current Doctor of Naturopathy and nutritionist and chose to attack my disease naturally with diet and supplements as long as I possibly could in order to continue breastfeeding. I knew it was a fine line I was dancing with my health. I had done the research into the disease. I went as long as I could until I had to make a pharmaceutical choice. It was time to shut the party down. Inflammation, pain and swelling were out of control.
After further research into my disease and my options, I chose to try an alternative therapy for autoimmune arthritis with a new rheumatologist that I found through the Road Back. I followed an antibiotic protocol in an attempt to manage my disease from 8/5/10-4/29/11. I experienced incredible results and was able to go without pharmaceuticals for a year and a half following my protocol. Then an inflammation party began again, accompanied by a double ear infection and as a result, I am currently doing another extended round with antibiotics (10/18/12-present). I wish more patients and doctors would consider the possibilities of this treatment. The evidence is there. The approach goes after part of the cause instead of hindering my immune system, which is the current protocol for most autoimmune diseases.
In September of 2010, I was given a new diagnosis of psoriatic arthritis because psoriasis developed under my fingernails and toenails. To this day, my blood work is pretty fabulous. Go figure. But I don’t need blood work and x-rays and MRIs to tell me something has gone after my body with the vengeance of a fire.
These days, I live in Dansko and Naot shoes and manage to do most of what I would like to do to some degree–most, but not all. My body isn’t what it used to be, that’s for sure. It’s an achy bag of bones as a result of coming under attack. It continues to fight the battle of an altered immune system and swelling and pain rear their ugly heads from time to time.
I think in the grand scheme of things, however, I’m doing pretty awesome considering what I’m dealing with. I’m certainly better off now than when I was first diagnosed. Eating a whole foods diet, avoiding processed/artificial food and beauty products, taking key supplements, staying active, managing my stress, seeing my chiropractor every 4-5 weeks, and loving God, my family and my life keeps me going these days.
I decided to blog because it was put on my heart to put down in writing what God is doing in my life and to connect with others. I have been so touched by what other bloggers have shared. Talk about therapy. Thank you for putting words to so many emotions and hidden thoughts. And thank you for your advocacy work and devotion to your blogs. It’s only fair I give something back through my story.
At this point in my life, I feel as if my life has changed from that of a physical battle to a spiritual walk. I am a better person for it. It doesn’t mean that I don’t cry and mourn some days for the loss of my health. I went into this disease eating well, exercising regularly and loving life. But I’m trusting God one day at a time.