Adventures with autoimmune disease

If you know me, or have been following me for any length of time, you know that I enjoy camping and getting dirty in great outdoors. I love spending time outside as much as possible, soaking up some vitamin d and getting dirt under my nails to combat depression.

Earlier this year I subscribed to Explore magazine’s “Live the Adventure” club box. 4 times per year I will receive a box full of neat gadgets and gear that I can take camping and adventuring. Or, just out to the local conservation area to test them out ???? With the box of gear, we get challenges and we post them to the private Facebook group page and we may win a prize. I do it just for the fun of it, but winning is always fun too!

This morning Kreacher and I went to the conservation area for our weekly hike; I laced up my hiking boots with my new fire starter shoe laces, and took my Big Orange Lounger (aka air couch, air hammock) to test it out and complete the challenge. I forgot to take my LifeStraw, so I will have to do that challenge another day.

So how does this fit in with autoimmune disease? Well, I have autoimmune disease. D’uh! ;) A few of them in fact. Recently I’ve developed carpal tunnel in my left arm/hand, bad enough that I need a brace on it. The brace helps A LOT! I can feel a bit of it in my right arm as well, but don’t need a brace for it. I’m also noticing some extreme muscle stiffness in my shoulders, upper arms, neck and in my hips and upper legs. Carpal tunnel is a common symptom of Sjogren’s, as is muscle stiffness, however, the exact pattern and symmetry of it seems very much like Polymyositis. Which commonly comes with Sjogren’s. *sigh* I guess we’ll see what happens there.

As an aside, I’ve been reading a little bit about “sero-negative” Sjogren’s, which means that some patients with Sjogren’s syndrome present without the typical auto-antibodies that are commonly found to diagnose Sjogren’s, namely, anti-SSA/Ro and anti-SSB/La. When I was being tested for Sjogren’s I was found to have none of the common antibodies that they’re looking for, so was told “it can’t be Sjogren’s”. Apparently, the rheumatologists that I went to are not keeping up to date with diagnostic protocols, or “don’t believe” in seronegative disease. Some people are lucky enough to find doctors who will diagnose based on symptoms alone; if you have the cluster of dry eyes, dry mouth, dry nose, dry vagina, and other Sjogren’s symptoms such as carpal tunnel, breathing difficulty (can affect the bronchial system and lungs), then is likely is Sjogren’s. If it looks like a duck, quacks like a duck…

”Chronic pain is pervasive in both seropositive and seronegative pSS patients, while pain severity and functional impairment is greater in seronegative patients…Patients who meet criteria for primary Sjogren’s but do not have detectable antibody to either anti-Ro/SSA or anti-La/SSB are considered seronegative. The prevalence of anti-Ro/SSA and anti-La/SSB antibodies varies according to the method of detection and referral pattern at the center performing the study (13). While seronegative patients have less systemic involvement, the factors contributing to health status specifically in seronegative patients are not well described. There are very limited reported data on whether serologic status modulates functional outcomes or psychological comorbidity in pSS.”  

And evidently, seronegative patients suffer more pain and neuropathy. Lovely!

Anyhoo..back to my adventures! ???? So there I was in the conservation area setting up to submit my challenges. I had to sit on the edge of the bluff with my feet dangling and show my fire starter shoe laces, and I had to set up my Big Orange Lounger on the summit/ledge and sit in it. No easy feat either of these! It’s springtime and the ground is quite soft, the edge of the bluffs are crumbling, and I noticed a couple of trees had fallen into the river because the ground had given way.

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I was also quite angered by the mess left by some idjits who had obviously gone out there to have a party. Now I’m not against having a party now and again, I’ve done it myself a few times of course. But whenever we went into the bush to have a field party, we carried out our detritus! No matter how drunk we were, we cleaned up!

I looked down the one bluff that plummets quite far down toward the river. I figured I could get *down* there to retrieve some of the beer cans and whatnot, but getting back up again would have been a challenge, even for someone without stiffened hips and quads! The ground is just too soft on the ledge, with not much to grab onto to get back up. If I had had a friend with me, or a larger dog, I may have tried it, but Kreacher isn’t big enough to pull me back up. BOL!

I did manage to get down a couple of easier declines to pick up some more litter, and got back up the hills without too much difficulty. The trick is to do it the right way, and look where you’re going, and where you need to get to. Walk up or down the hill on a diagonal, and try to find the least soft areas so you don’t slide. I also used a fallen tree to get up part of it. My hips were protesting a bit, but I made it.

Have I mentioned that I’m rather stubborn, and refuse to let my diseases get the better of me? Uumm…yeah…stubborn ????

 I do think that staying active and mobile is very important to combating autoimmune disease. I understand the pain, believe me! I have struggled with pain for the better part of my entire life! I was diagnosed with fibromyalgia, way back in 1991 when they were still calling it fibrocitis! I’ve learned to deal with it though, and I’ve learned that some foods *really* cause it to flare and become worse. So now I avoid those foods like the plague. Grains are MAJOR contributors to inflammation and pain, so being diagnosed with celiac and removing grains from my diet was a blessing indeed! I really do not miss the fibromyalgia pain at all! And I love being more active and able to go out and go for a hike with my dog. (who is currently sitting on the balcony in full sun soaking it up!)

It *is* possible to lead an active life if you have autoimmune disease. *All* of them cause pain, regardless of which one(s) you have. How you deal with it, and how you treat the pain, will determine your level of activity. Prescription or off the shelf pain medications are temporary, and can cause side effects with long term use (kidney and liver damage, stomach ulcers are just a few), whereas a non-inflammatory diet has no ill effects at all. “Side effects” of a healthy, non-inflammatory diet include being able to go for adventures in the woods, being more active, being able to keep up with your kids or grandkids, suffering less pain, less fatigue, better sleep, less brain fog, and on and on.

Which would you rather?  

Prior to my celiac diagnosis, I used to have days, weeks, MONTHS where I could not move *anything* without suffering pain. I couldn’t go for a walk down the driveway, never mind a backcountry hike. I couldn’t lift a glass of water, never mind pick up my 25kg dog and carry him to the bath tub! I couldn’t even fathom going camping for a couple of years there, no matter how much I wanted to go. The thought of it alone caused me pain! This year though I’m thinking of a solo back country trip! Well…solo with Kreacher dog of course. He can carry his own food though ????

If you are tired of taking medications that don’t work, tired of suffering the pain in silence, and if you are ready to grab the bull by the horns and BEAT autoimmune disease, I can help! Contact me for a free on-hour consult, let’s talk about where you are, and where you want to be. Let’s talk about how my coaching program can help you get there. Lace up your hiking boots, and get ready for some adventure!  

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