Ankylosing Spondylitis Awareness Month – My Story Continued

 

This is the final installment of my Ankylosing Spondylitis Awareness Month posts. I’ll finish up my story here. I hope it’s an encouragement to you that, although there is no cure for AS, it can be managed with diet and lifestyle modifications.

The surgery to repair my shoulder was an orthopedic success and my surgeon was fantastic! However, the signs that this wasn’t going to go well showed up moments after the nerve block wore off. The pain was unbearable and the intensity didn’t relent for several weeks. The summer of 2014 was filled with stress, upon stress, upon stress. In June, my dads health began to fail and he passed away unexpectedly a month later. As I worked with my family to get his affairs in order, sell his home, plan his memorial etc., my health continued to spiral downward. My shoulder wasn’t healing, I had not regained range of motion and pain was a constant companion. At the same time, I began to experience such heavy cycle bleeding that after several procedures, my doctor suspected cancer because of my history and insisted that I have uterine surgery to remove a mass (it was benign, thankfully!), but unfortunately it didn’t help my symptoms.

During this year, I felt as if I were in a fog – like I was going through the motions of living, pretending to be fine, knowing that I “should be back into life by now.” It was made especially worse by people telling me things like, “My dad had that surgery and he was back at work the next day…” or “my sisters, friends, brother had that and didn’t even need therapy…” You know… that kind of talk is right up there with, “you don’t look sick.” I didn’t even have the brain capacity to plan meals for my family and my son virtually home-schooled himself that year. I felt so guilty for not being able to participate in the lives of my friends and family.

By November of 2014 my GI (gastro intestinal) system jumped into the mix and went haywire. I won’t go into the details, but believe me when I say, it was bad! By December, I was ready to give up, check out, let it end. I had nothing left to give, no fight left in me and I felt like a useless burden to my family. I was eating only small amounts of food.  Pain and energy levels determined which ADL’s (activities of daily living) I would attempt in a day. There were days when I would sit on my closet floor trying to decide which articles of clothing were the lightest, thus causing the least amount of pain to wear. I cut my hair very short because I didn’t have the energy or range of motion to manage my long hair. Testing and diagnostics during this time revealed elevated liver enzymes, systemic inflammation, intestinal permeability, Barretts esophagus, Epstein Barr virus, precancerous lesions in my colon, mycoplasma pneumonia, non-celiac gluten sensitivity, a severe nut allergy and several other things. All I could manage was to give up gluten – not that difficult since I was barely eating anyway. This small change ended up dramatically helping the brain fog in the short term and GI symptoms in the long term.

In early 2015, I had a “heart event” that landed me in the ER, bronchial pneumonia that lasted way too long and because that wasn’t enough, I also had shingles!  BUT… this was the year that things started turning around. I started feeling alive. My brain started functioning better and the light at the end of the tunnel was no longer an oncoming train! I embarked on the AIP (autoimmune protocol) and saw great improvements in my health, but it wasn’t enough. When I learned about how starch affects people with AS and IBD (inflammatory bowel disease) – I have colitis – by “feeding” the klebsiella bacteria in the gut, I knew I’d found the missing link! The gut symptoms got better almost overnight and the pain lessened several months after that.

I am not pain free, but I sure do know my triggers. Stress is the main one, followed by sleep, then food. I’ll write more about these lifestyle factors soon. But I will say that it doesn’t matter what you put on your plate if your stress is out of control!

Even though these posts are long (sorry!), they really just skim the surface of what went on during the lowest points of my health. I know many of you can relate and I pray your healing journey will bring you health; I also pray what I write will be a help and encouragement to you!

My favorite resources during my recovery (and now too)…

A fellow AS warrior, Andrea Wyckoff, over at Forest and Fauna.com considers herself to be in complete remission because of this lifestyle. Her story is very inspiring and she was a tremendous help to me at a time when my health was tanking. I’m forever grateful for her willingness to help me. Her cookbook and recipes are wonderful!

Eileen Laird at Phoenixhelix.com has managed her rheumatoid arthritis symptoms with diet and lifestyle. She has a fantastic podcast (and many other resources) that was like school to me during my worst times, and continues to be even now. She always presents information in a clear, concise and respectful manner. I never miss an episode. Oh and her Instapot cookbook is amazing!! I highly recommend it!

Carol Sinclair’s book – The IBS Low-Starch Diet – a great book with a horrible title – she has AS and IBS (not IBD). Her recipes were not appropriate for me because I follow a modified paleo type approach, but the information she shares is fantastic!

KickAS.org and spondylitis.org are good resources for AS patients.

How all this has changed me professionally…

As an occupational therapist, I have always strived to help people achieve their best within their personal limitations, but now my heart is especially filled with compassion for people with  autoimmune and other chronic conditions. I use gentle manual therapies and practical nutrition and lifestyle interventions to help my clients get back to doing what they love in their daily lives. I work with clients in person and remotely. I can’t help but give back what I’ve been given, so that’s what I do.

Until next time…

Live well. Be well. Love abundantly.

Jeanne

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