I’ve been AWOL for nearly two months and now I pop in with a random post. You have every right to say, “Where’ve you been?”
I could answer that question in many ways. I still haven’t recovered from the move. I’ve been traveling. I’ve had some other health issues. Lots of family coming and going. I actually have HALF of the rest of my interview with my physical therapist transcribed, but getting to the rest of it has been just beyond my grasp. I’m trying to get back to work. I’m also still trying to find some equilibrium in my everyday attempt at self care. Exercise (haven’t been doing it much.) Yoga (does getting a membership to Yoga Online count? I suppose not if you don’t make it all the way through a practice.) I try and do prayer and meditation and some reading every day (all that has been sporadic.) But tonight I really, really needed to write about a decision I made earlier today, and I feel like this is the best place for it.
First, an update on my sacroiliac joint fusion. I’m nearly 8 months post op, and yes, my low back pain is still mostly gone. That’s huge. That was my main complaint for nearly 30 years… chronic lumbar pain. It has made a huge difference in my everyday life. But I am not by any means pain free. I still have major soft tissue issues which means that I still have other pain (mostly front of my pelvis, glutes, and hip bursa. But none of that is new… I had those before surgery.) I am about to try and find another physical therapist now that I’ve gotten moved. My suspicion is that my psoas is still cracking the pelvic whip, so to speak, in that it’s constantly tight and trying to run the stabilization show. In other words, I think there’s a whole lot of soft tissue in my body that hasn’t gotten the memo that the stabilization crisis is over.
But that’s not the main thing I need to talk about here. If you’ve followed my blog at all you know that SIJD isn’t my only pain nemesis. And I have a lot of cyber friends who could say the same thing. Two of my particular enemies are autoimmune related. I have Sjogren’s and Hashimotos. I’ve always known that diet plays a big part in how I’m feeling; I gave up gluten nearly 15 years ago — before it was a “thing” in our society. I won’t get in to what led me to that decision because it’s a long story. But if I eat something with gluten in it I end up feeling like the Tin Man from the Wizard of Oz. Except that he has the flu. Yeah — the Tin Man with the flu. That about covers it. I could go back on gluten for awhile if I wanted to do a blood test (I’m told getting the sticky stuff in your system is necessary to detect the antibodies.) But I’m not willing to feel like shit so that I can once and for all tell people I have Celiac Disease. I don’t need permission to avoid something that, to me, is akin to poison… it makes me feel horrible so I am gluten free. Period.
I know people who’ve gotten some significant relief from autoimmune and other severe unspecified illnesses by making major diet changes. My web designer was so sick he went to the Mayo Clinic and they couldn’t figure out what was wrong with him. They just said he’d have to live with the welts and hives and severe gastrointestinal problems he was having. They prescribed lots of meds to take the edge off and sent him on his way. Long story short he became a vegan and he is 100% healthy today. In like fashion, Terry Wahls, MD reversed her MS with an autoimmune paleo approach. Seriously. She was in a wheelchair and now she’s out walking around and teaching others how to heal themselves with food. I’ve read about people with other autoimmune illnesses who’ve shed many of their symptoms by changing their diet. And I have worked hard to convince myself that I don’t need to get that hard core about it, because honestly, I don’t want to give up the way I eat. I gave up gluten, for crying out loud. Can I please just have my queso and chips and beans and nuts? COFFEE? WINE? Food is such a huge part of my life. I love food. But something happened this week that has given me an incentive to reconsider.
Two days ago my symptoms took a huge turn for the worse.
This is my right hand; my thumb joint was so swollen and painful I couldn’t even hold a pencil. I had to do everything left-handed: open the car door. Pull up my pants. Carry my coffee. Even holding a fork was painful. And it freaked me completely out. I also have a small patch of skin on my leg that’s losing pigment. I asked my doctor about it this week and she said it might be a small patch of vitiligo. OMG. If it is, that’s also auto-immune related. And for the last five years I’ve had recurring rashes (not on my face; I don’t test positive for lupus but the rash seems to flare when I get in the sun.) Bottom line is that something has to change.
I’ve been leaning on my middle daughter a lot about all of this because she does have lupus and she’s had to take steroids a few times to get her system calmed down. A few months ago my allergist gave me prednisone to take before skin testing (which I haven’t done yet) so I took a very small dose to see if it would help me. In fact I took four very small doses over the last two days and I am absolutely floored at the difference. (Don’t worry — I know the dangers of steroids and after a total of 20 mg, I’m done. To put it in perspective, the allergist wanted me to take 40mg a day for five days. Yikes — I think I’ll pass on that.) But wow. Just wow. Two days ago I couldn’t have even typed this. Right now my hand doesn’t hurt at all, and though it’s still a little bit swollen I am completely functional. And here are my a-ha’s (I am finally getting to the point!)
1. I forgot what it was like to live without the chronic, fiery systemic inflammation. I have felt SO GOOD today. I stand in the kitchen and I don’t feel like an elephant is taking a nap on every square inch of my body. I thought, “This is what healthy people feel like all the time. No wonder it sounds to them like I’m a hypochondriac or a whiner, because they can’t fathom what it’s like to live with this pain every. single. day.” One person described it this way: you feel like you literally have the weight of the world on your shoulders. When you take steroids, it’s temporarily removed.
But steroids are really bad for you. As my daughter says, “they’re the devil.” Necessary? Sometimes. Beneficial? Heck yeah, when it comes to pain. A long-term solution? Nope, nope, nope.
2. I can’t minimize how much my autoimmune illnesses have complicated my SIJD issues. When you’re in the middle of an autoimmune flare, everything hurts 10x worse than it ordinarily would. Remember that time you had a virus that made your fever spike, and you ached all over? Yeah, that’s what it’s like to have an autoimmune illness. And when that’s temporarily lifted you feel light as a feather. I bring this up again because I want to underscore that more often than not surgery isn’t going to just flip the pain-free switch if you’ve been a chronic pain sufferer. More often than not, it’s complicated.
3. I can either keep eating the way I eat and surrender to pharmaceuticals, or I can try the autoimmune paleo diet. But it seems so restrictive! No dairy, no nuts, no traditional starches (potatoes/corn/rice.) No alcohol. No sugar. No COFFEE! (Coffee is probably the biggest loss for me — even above wine and food.)
All this to say, all of us pain people have a tipping point. In fact if you’re like me, you have several. We often don’t spring into action until lives back us into a corner. That happened with my SI joint fusion. And now, this autoimmune thing is staring me down. I really don’t have a choice anymore! Forget about the bored tastebuds, I’m just super intimidated by the sheer amount of work this is going to take — planning, shopping, cooking. (I often think about what it would be like to be Oprah and be able to hire a personal chef who cooks delicious autoimmune paleo meals for me whenever I want them. A girl can dream.)
So here we go. There’s one caveat I’m going to say up front: progress not perfection. I’m starting slowly. Easing my way into it. I’m not going to get all militant with myself right away because for me, that all-or-nothing mentality sets me up for failure every single time. I am going to be autoimmune paleo-ish until I can manage to eliminate everything they say you’re not supposed to eat. And then we’ll see what happens next. But tonight I’m having a glass of wine.
What about you? What’s your tipping point?
** Red truck photo by Alan Levine, licensed under Flickr Creative Commons. No changes made.