LindsayI’m kind of gross lately. By that, I mean I have stopped washing my hair on a regular basis, wear the same pair of shorts for multiple days regardless of whether I have recently shaved (or washed the shorts), and wear the same dirty pair of flip flops every day. I also play fast and loose with the 5 second rule, but that’s neither here nor there.
I seem to have reached that neuropathy plateau where my pain lessens for 2-3 weeks, then is intense and widespread for 1-2 weeks, then repeats the cycle. When the pain is mild, it’s primarily localized in my feet. When it’s bad, it’s an intense burning everywhere, even my torso, neck, face, and occasionally a tingling in my tongue. Showers are often painful, as are pants and most clothes. If I was tan and in awesome shape, I’d petition that we become a nudist society.
I like my neurologist. He specializes in neuropathy and is familiar with postural orthostatic tachycardia syndrome (POTS). He listens, responds quickly to my emails, and is an all-around pleasant human being. But his answer to my pain cycles is to take more gabapentin. His response to my question of how long I will have to deal with this is forever.
Maybe that’s the unfortunate truth. Maybe this will be lifelong and gabapentin is the only solution. But I think it warrants a little more investigation before we give up. Let’s try some shit out and see what happens.
I can’t help but think that there is a pattern to the cycles of pain. I take the same amount of gabapentin per day, regardless of the level of pain (y’all know by now that I’d rather be in some pain on a small dose, than no pain on a large dose). I know flares in neuropathy happen, just like most chronic illnesses, but for the flares to occur with such reliable consistency, I wonder if I’m doing something to cause them.
When I first developed neuropathy a few months back, a good friend called me and said she has a great naturopathic doctor. She wasn’t sure if I was open to that, but if I was, she was happy to pass along the phone number. Generally I’m a little skeptical of naturopaths as: 1. they aren’t covered by my insurance, 2. they often aren’t familiar with my conditions (although neither are a lot of western practitioners), 3. they’re expensive, and 4. I’ve heard rumors that they tout all their proprietary supplements, which naturally you need to start immediately at some ridiculous pricing.
But in the middle of a particularly bad flare, I decided it was worth a try. I’ll save you the long, winded recap and just tell you that I have a new naturopath and might have a bit of a healthcare crush on her.
Are healthcare crushes a thing? They should be. I fall a little in love with anyone who takes good care of me.
I like my naturopath, really like her, and not just because she went to my high school and told me I have the body of an athlete. Although, let’s be honest, neither of those hurt.
She listens to me. She has yet to try to sell me a supplement. And while she did tell me to stop eating dairy and gluten, and while gluten is in everything that’s holy and good, like beer and cake, and while I’m rethinking my whole purpose in life without beer and cake, I feel like she really cares about me. If she doesn’t know something, she researches it. Calls a few people she thinks might know about it.
She also takes an interest in my personal life and offers insight. I think of her as my wellness coach.
I am most excited about the Nutra Eval micronutrient testing she ordered and which I just completed. Once the results come in, I’ll do a separate post about that, but you may remember from a previous post that I had been wanting to have micronutrient testing done for a while.
The best part about my new doctor is that I am totally comfortable around her, which is rare for me. I’m not 100% comfortable around most people, because I’m awkward and weird and kind of gross. But when I walk in for my appointment with messy unwashed hair, the same skirt I have worn for the past three days and one shaven leg, she doesn’t even bat an eye.
There’s something to be said for those people in your life with whom you can be yourself, no matter how stinky.
“I have been bent and broken, but – I hope – into a better shape.” – Charles Dickens
Smell ya later.
– Linds
My daughter has almost eliminated her POTS symptoms that had her bed ridden for over a year by eating a vegan-gluten free diet. YES, all your favorites are gone but so is the exhaustion, pain and loss of living a life. It took 2 years but she is now a fully functioning college student that will graduate in December in Nutrition. Also, deep tissue massage and acupuncture! I know they aren’t covered! Believe me I know! I’m totally broke but my daughter is living a healthy life.
That is fantastic!! I’m so happy for your daughter. It’s hard to give up so many things you love, but I’m glad to hear it made a huge difference for her!
You’re a great mom, Cindy!!
Oh dear. Your opening paragraph described me! I don’t have a chronic illness to blame, so I guess I’ll blame… my toddler?! Hah. So glad you’ve found a naturopath you love. The crush totally makes sense. I’ve always been curious about that route, as well. I’m very sorry to hear about the pain, though, and to know that it’s interfering with your life. You are one of the bravest, strongest people I know — not to mention the nicest to be around — so it feels pretty damn unjust. Kind of off the wall maybe, but your description of the burning reminded me of Alan Arkin’s autobiography, “Out of My Mind” (on Audible). He describes a burning that he attributes to some kind of spiritual awakening… you might find it interesting! I related to his attitudes on spirituality and philosophy in a big way. Hugs, from one smelly to another.
Toddlers are definitely a legitimate excuse for being smelly! I used to be so insistent on washing my hair daily, and now I don’t really care, despite exercising daily. Which is especially unfortunate during these warm summer months. I feel sorry for the husband, but thank god for deodorant and my new favorite find, dry shampoo.
“Out of My Mind” sounds very interesting, I’ll have to see if my local library has a copy. Thanks for the recommendation!
I’m sorry the pain is still so awful. I don’t blame you falling in love a little with anyone that takes care of you – it’s hard to find a doctor or specialist that listens, let alone actually cares, and we need to hold on to those rare gems! I’m glad you’re comfortable with your new doc, that sounds like a promising start. I’d agree too that things deserve a closer look and more testing, don’t give up hope yet on that front. How long do you think the Nutra Eval micronutrient results will take? My fingers are crossed!
Caz xx
Yes! When we’re so often dismissed by doctors, it’s hard not to adore one who just treats me like a human. I especially love the new one because she listens. Since she’s a naturopath, her appointments are always a minimum of 30 minutes, and she spends the entire 30 minutes with me. I don’t know what it’s like there, but it’s not unusual for doctors in the U.S. to spend 5 minutes or less with a patient. She also takes an interest in my life – asking about my dog and husband, what I did that weekend, in addition to asking how I have been feeling.
I actually just got the NutraEval results last week and will post about it soon! I’m already working on a separate post, but will post about the testing after.
Hope you’re doing well, Caz!
I’m sorry you’re experiencing such consistent neuropathic flares but can’t seem to associate it with anything. It makes me wonder if there is something to at least correlate it with, as well. Diet or activity levels maybe? Of course if you just ordered a fasciablaster, hopefully you can get the neuropathy down with it and escape the cycle all together. I really hope it works out as well for you as it has for me. xx
Thank you! I’m excited to try it.
For some reason I’m unable to like your posts, but if I could, I would Like this one. 🙂 Hoping she helps! I went to one early on and she definitely helped with certain issues!
Thank you! I don’t know why sometimes the “like” button shows up on WordPress and sometimes it doesn’t. I have had others say that they can’t see it as well. I even added a couple of plugins that were supposed to add the “like” button back, but it sounds like it still isn’t working 🙁