On March 14th after 11 really good days, I struggled with dizziness, balance issues, and fatigue for most of the day. The world attempted to spin out from under me twice but righted itself before I fell. D came home early and found me on the couch where I was holding it together until I saw his face. At that point, I lost all composure for about thirty minutes while the kids played outside.
When I could see straight again, I went to the health food store and explained my issues to the sweet manager there. I had been on a low sodium diet for a month with moderately positive results, but here I was again at the mercy of Meniere's after only 11 good days. He listened then sent me home with three new supplements.
I then called my chiropractor and asked if his practice could help me. He said yes, so I saw him twice in the next week.
Thus began the period of acupuncture needles, massage, no more than 1700 mg of sodium a day, and B6 diuretics, among other things. It also began the period of my symptoms receding, my energy level coming back up, and my fear of having another episode slipping to the back of my mind.
I have had three amazing weeks.
Yesterday was my follow up with my ENT who I adore because he did not treat me like a nut job when I stumbled into his office a couple of months ago saying, "something is up with my ears and my balance, and somehow I think my period is related." He said, "Yeah, that makes sense" and he got me a diagnosis.
Last week he had a representative call me to see if I'd be interested in participating in a clinical trial for a new drug for Meniere's. The drug is the same, actually, but the dosage is being changed so it can be administered in one dose instead of four or six. Because of how much better I felt, I said no. I expected my ENT to be thrilled with my progress, so I was surprised at his reaction.
ENT: Wow, you hit this stuff with everything at once so I can't really tell you what is helping. It could be any of the changes you've made.
Me: Whatever it is, I feel great!
ENT: Well, I hate for you to have to keep doing all of this. Maybe if you have a few more good weeks, you can start pulling back on some of this and pinpoint what really works. It's just, it's a lot to do when you have to keep it up.
Let me explain why this caught me off guard: the clinical trial was going to require that I have a needle shoved through my ear drum into my inner ear to completely shut down my vestibular system. The current side effects of this procedure that calls for four to six applications are increased vertigo, increased dizziness and accelerated hearing loss for months. Then when that is all over, the body has to figure out how to use the balance systems it has left to function.
I have bilateral Meniere's meaning it's in both ears. It would be a complete guess as to which one to start with, and because of the increased risk of deafness, it would not be a good idea to do both. So I might have had this done and not improved. Plus, it's a clinical trial. I would have been in human guinea pig territory. Instead of four to six doses, I would have received one megadose.
So for my ENT to think taking four extra vitamins a day and going to a chiropractic spa while not salting my food is extreme floored me. Needles inside of my ear drums are extreme! A chiropractor popping a bone in my ear is not that big of a thing.
I discussed this with D and my sister, and they brought up a very relevant point: Celiac prepared us for this journey. They both thought what my doctor was experiencing was shock more than anything. When offered a treatment that only involved I show up, he assumed I would take that over lifestyle modifications. A decade ago I probably would have, but after the complete overhaul the Celiac caused in our lives, diet modification, supplements, and chiropractic care seem like obvious places to go for help.
In the midst of our early Celiac experiences, I couldn't see that going through the fire would lead to refinement, that God might be preparing us for changes that affected the rest of our lives in a positive way. But now I do. Whereas I probably wouldn't have even researched alternatives a decade ago, I now have no problem seeing these holistic opportunities as gifts, not burdens. I hope I'll do a better job of explaining that when I see my ENT for a follow up hearing test next month (I will have a lot of those. Despite my outward symptoms not being prominent right now, the hearing loss can continue throughout life.)
I know I will probably still have bad days. There's nothing to say this brief reprieve is going to hold. And it is work, in a sense. I don't eat out, even at the approved GF joints we can go to. The sodium levels are too high. I now drink my once a week coffee decaffeinated, which does feel a bit like defeating the purpose of coffee in the first place. But the work is worth it, and so is the perspective. My word for this year is gratitude, but it's very easy to get off track. I have been guilty of complaining lately about how the Celiac won't seem to leave Wren's colon alone. That battle is apparently going to continue indefinitely, and there are times I absolutely seethe over that fact. But we're managing it, praying about it, seeking advice from those in the medical field and the holistic community. We've been on these journeys before. God gives us the strength to continue. And He is still in the healing business. We've seen that repeatedly.
So I'm grateful today, for Celiac and Meniere's and outside-of-the-box options. For learning experiences and growing experiences and perspective. For days on my feet and weeks without throwing up and for what Wren called "a really amazing poo" this morning. I'm grateful that our bodies are amazing creations meant to work a certain way, and though they can go off the rails, they can sometimes get back on and keep moving. And even when they can't, our souls can grow and flourish, can grow closer to the Creator no matter where our journey leads.
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