Real People, Real Paleo—Jolaine’s Story (and how difficult getting an accurate diagnosis can be-part2)
“Real People, Real Paleo” is a series of posts written by real people who were inspired to share their paleo story with you. There is such diversity in the challenges that bring us to a paleo diet and lifestyle and in what we hope to achieve by adopting them. These stories are intended to be a place of inspiration, written by real people, showing the diversity of our needs and our approaches to this way of eating and living, and explaining how each individual’s implementation of paleo meets their needs. By sharing these people’s stories with you on my blog, I hope to redefine what paleo success is. I do not believe that eating paleo is purely about losing weight, gaining muscle, and having 6-pack abs. I believe that paleo is about being healthy enough to thoroughly enjoy life, whatever that means for you, and about sustainability for our entire lives. If you are interested in writing up your story, email me at email@example.com
So, I’m not in the habit of commenting on stories written for my Real People, Real Paleo series. My preference is to let these stories speak for themselves. But, I wanted introduce Jolaine’s Story with some amazing (and horrifying) statistics. Autoimmune disease can be challenging to diagnose because it often presents as a collection of vague symptoms (such as fatigue, headaches, and muscle or joint aches). Too often these symptoms are dismissed as signs of not getting enough rest, working too hard, life being too stressful, being over- or underweight, or our bodies just getting older. What’s more, because there are no “autoimmune specialists”, we see doctors who don’t necessarily have the appropriate training to accurately diagnose these diseases (instead we see specialists in the organ or system that is showing the most symptoms). A survey performed by the American Autoimmune and Related Diseases Association, Inc. (AARDA) showed that the majority of patients later diagnosed with serious autoimmune conditions had a difficult time obtaining a diagnosis. In fact, 45 percent of these patients were labeled as hypochondriacs in the earliest stages of their illnesses. Jolaine and I have had several back and forths via e-mail (and facebook and pinterest!) and I asked Jolaine to share her story because I believe it will resonate with many of you. And I hope that by sharing Jolaine’s decades-long battles with undiagnosed autoimmune disease, that someone out there will have a lightbulb moment and will be armed with knowledge and confidence to request the right diagnostic tests from the right specialists and finally find their answers.
This is part 2 of 2. Read part 1 here.
So, about two years ago the beginning of finding the answer began, although at the time I didn’t know it. I was having considerable amount of pain in my feet, so naturally my doctor suggested a podiatrist. A little funny tidbit it that his name was Dr. Schumacher! For those who have zero German knowledge, that means shoemaker. J He was a really kind fella and found that surgery may indeed be helpful, but that depends on how well I heal. He asked me series of questions regarding my medical history and it didn’t take long to realize that inflammation could be a huge factor and be a hindrance in healing well. He was curious, which I like because so am I, and wanted to do some blood tests just to see what we would find. Sure enough, my rheumatoid markers were slightly elevated, and I had tested positive for a gene called HLAB27. A small little bell went off in my head and it sounded familiar. My oldest sister with Crohn’s disease also had tested positive, as had my Mom. He suggested that perhaps in the next few years I should see a rheumatologist and follow up on the rheumatoid tests just to watch my inflammation levels. Well okay. I filed that away in my catalogue of things to do, and not anxious to make yet another Dr’s appointment. Not long after that, a friend on Facebook posted a very unusual comment saying “I am HLAB27 negative”. Odd, but I understood so I sent her a private message asking why she was tested, and that I’m positive for the gene. She responded asking if I have AS. I didn’t know what that was, so I quickly went to Google and read the symptoms. I just knew, deep down more than I ever knew that I did have AS. Every single random symptom was a part of my life. Facebook is good for something after all! I insisted on a referral to a rheumatologist, and waited another 9 months to get an appointment. My physiotherapist, chiropractor and naturopath all didn’t think it was likely that I’d get a positive diagnosis. When I saw the specialist the first time, he did his usual physical test. Bend, twist, reach, poke here and there, does this hurt, can you take a deep breath and determined it seemed highly unlikely. And then, for the first time a doctor looked me in the eyes and said; “but I believe what you are telling me about your pain” and he took into consideration my blood tests and family history. He ordered an x-ray and there it was, my diagnosis. Ankylosing spondylitis. My constant companion.
Many would say it’s good to have a diagnosis now. Now you can move on. At first I agreed with that thought, but I quickly learned it was not all good. Having that diagnosis removed my hope that maybe it will be gone one day. Just a little tweek, the missing puzzle piece, and I’ll be back to my old self again. If I could remember what my old self was exactly that would be helpful. The bright side is that now, when people say “what’s wrong” I don’t give a long list of symptoms and feel like an idiot. It’s a disease they’ve never heard of and that seems legit enough to appease them. The bright side is now I know where to focus my investigation of learning and healing. The down side is I still have pain and the losses are not recoverable or measureable. The down side is, the medical community still doesn’t get it. I still struggle to get treated like an intelligent adult woman with choices in my own care. I’ve been prescribed many drugs since my diagnosis followed with “if you don’t follow my advice and prescriptions I will no longer be able to be your doctor”. I agreed to try each of them for 2 weeks, and each time I go into a flare up of immobility and pain that takes your breath away. The longest of these flares this year was ten weeks nearly complete immobility, after which I needed to pretty much learn to walk again. As I write this, I’m again in this same position.
The biggest bright side is during those ten weeks this summer, I came across the paleo lifestyle and diet. I soaked up every bit of information I could find. I had previously seen the video of Dr. Terry Wahls and her journey with paleo and healing from MS, but that was before my diagnosis and for some reason that didn’t stick as something I needed to know. I instead passed it on to my youngest sister with MS and left it at that. When I look back now I see little pieces of the puzzle I should have picked up on, and can only explain it as I was simply just exhausted and trying to survive. So for those ten weeks I read for hours and hours on my smart phone through the days and nights while lying in bed. I quickly learned I needed the auto-immune protocol (and an IPad) and there was a huge lack of information available to learn more. But I had hope again, I had something I could actually do to try and regain control of any kind, to regain health. I could be proactive and this suits my type A personality really well. J I had already found through trial and error many of the foods I couldn’t eat and had been eating mostly paleo for years so the adjustments weren’t as overwhelming as for others perhaps. Those little tidbits of the AIP were the pieces of information I didn’t know for sure. I’d heard now and then to avoid nightshade vegetables or too much fruit but never knew why. No offence meant to those who chose paleo for a belief in evolution or because they belong to Crossfit but that just didn’t cut it for me. I needed a medical and scientific perspective to really grasp with full belief about the in and outs and why’s of it all. That is when I came across our friend The Paleo Mom, and her blog and podcasts have been invaluable. I’ve totally geeked out and print out her posts and pull out the highlighter and put them in a binder. I sound exceptionally smart at my naturopaths office now, whereas before I was only moderately smart. Her knowledge extends past what I could possibly have figured out on my own easily, her personal battle and continuing journey help when I feel alone and overwhelmed…because I’m not alone, and her dedication to help me and us is appreciated to the depths of my heart. I’m not healed, I’m not even in remission, but I’ve made progress and I feel equipped to be a patient that stands up for myself. I don’t expect overnight miracles after 20 years of this disease, but any regaining of living vs. being alive is a gift I’ll gladly accept.
My journey continues, and underneath all the symptoms and all the labels I’ve been falsely given, I’m still Jolaine. The only way that can be taken from me is if I let it slip away and believe the lies and react to the ignorance as a personal affront. People mean well, perhaps at least most of the time, but unless they live this journey they really can’t even begin imagine how difficult a road it is. This part of my story is really only a small part. There is much more on the personal and emotional side, and it’s the more painful part of the story.
If I learn only one thing from it all, it’s to be kind always to all people. I try my best. Everyone has a story and hurts so we can chose to add joy to their day, or be judgemental and rude. Choose joy, for yourself and others, even on the hardest of days we must find joy. For me today, I’m joyful I have flannel against my achy body, for tea and bone broth, and for a husband who loves me in sickness and in health and who still sees Jolaine.