November and December have been busy, and in very tiring, healthcare-type ways.
I now have my own gastroenterologist, following the spike in my tTG number earlier this year. To recap, it started out at >250 in 2018 when I was diagnosed with celiac disease. In January 2021, it was 156. The next time I was tested, April 2022?, it was 221. I was shocked, and referred to GI.
The GI doctor wanted to do another endoscopy, and I really didn’t want to do that. I got the celiac panel done again (September?) and my tTG was 98. Under 100! Hooray. (It’s supposed to be under 15.) We can hold off on another endoscopy. I did get referred to their dietician because the ONLY POSSIBLE ANSWER is that I’m still being exposed to gluten somewhere. I recently had that appointment, and I talked to the dietician for an HOUR. She also took my info to her celiac group and asked for their input. I came away with these three things: double bag anything containing gluten that my husband eats, don’t eat “modified food starch,” as that can be from wheat, and …stop eating certified gluten free oats. Oats have a protein in them similar to gluten that a very small percentage of people with celiac react to. So, I will stop eating oats and get tested again in April 2023. We’ll see if the number comes down. She said that the 221 result must have happened right after I was accidentally exposed to gluten, and then the number came down again. I want the number to be under 15, of course, but I also don’t want to eliminate oats from my diet. If you don’t eat gluten, oats are often used for pancakes, baking, etc. They’re not just a breakfast food. Sigh.
I also had my six-month follow-up with the rheumatologist. He didn’t find any evidence of another autoimmune disease in June, and he didn’t this month either. But because I have a positive ANA and a positive centromere antibody, I get to check in with him every six months in case I develop lupus or scleroderma. He had referred me to a neurologist in June, and that appointment is coming up in February. At least I like this rheumatologist. He is not condescending, and he seems sincere when he wishes me well.
Furthermore, I got up to a 600mg 3x/day dose of gabapentin before deciding to come off of it. It wasn’t doing anything good, and I think I was experiencing a couple side effects (though it’s hard to know for sure). I wanted to come off gabapentin before trying duloxetine (or a gelatin-free alternative?). So, I had a follow-up appointment with the pain management doctor, but he couldn’t tell me much except that I’d have to talk to the compounding pharmacy to see if I could get an animal-free one, or if I could just remove it from the capsule and ingest the contents. My insurance doesn’t cover compounding pharmacies, so I’m wary of the cost. And I still haven’t been given their contact info, so no progress has been made on that front. I was also referred to physical medicine and rehabilitation, who can help me go in another direction (like oral baclofen), months from now, if duloxetine doesn’t end up helping.
And finally, something else is afoot. My right foot. In August, it had begun to hurt with no known precipitating factor. Except that I spent the summer in bare feet or slippers rather than snug footwear with lots of support. My feet will periodically “give out” or “collapse” and be really painful and then it will go away. Sometimes I can’t put weight on it, but it eventually works itself out. This time, it did not. There was no fracture or sprain. But there was a small, painful bulge that did not go away with cold or elevation. Hmm. I now wear “inside shoes” in the house, and I don’t like it, but I need to.
I was referred to an orthopedist. He did not know what the bulge was, and I was sent away with a lace up ankle brace, a PT referral, and a follow up appointment. Sometimes I could walk on it without much pain at all, and sometimes it was extremely painful and I could bear no weight at all. PT did not help much. I went to my follow up appointment with a new tactic. This time, I drew a map of the pain on my foot and ankle. You can see the swollen part–it’s the squiggle rather than the straight lines. Just below all the blue on the side is the scar/indentation from my 1992 calcaneal neck osteotomy with lengthening. This area has for years periodically produced a sharp pain, and I’ve wondered about the integrity of the bones following the procedure.
Sorry if feet gross you out; pictures coming:
The doctor didn’t blink at the marker on my foot, nor did it seem to elucidate anything for him. I felt frustrated going to a follow up when nothing had changed or improved. He suggested that the next step would be an articulated (hinged) AFO. That’s a little funny, but fine with me, if it will actually help. Funny in that I had lots of different AFOs as a kid, and then tried to use two ExoSyms with knee sections as an adult. And now we’re here.
I wanted to know why I have a seemingly permanent bulge on my foot, and I wanted this doctor to be able to tell me what it was. As in, my foot felt fine, and now it doesn’t and I actually have something visibly different/wrong. Help, please? He said he could order an MRI if I wanted.
I had an MRI (My fourth now, but at least the top half of my body was out and the ceiling was pretty.) I went to see the orthopedist for the third time to discuss the results. He had me take off my shoe and point to where it hurt, again. I wanted to bring up the marker picture and show it to him, again.
“It’s the swollen area,” I said, pointing to but not touching the bulge.
“Here?” he asked, touching a bony protrusion that’s been there for years and is not the new mysteriously swollen area that I’ve seen him for twice already.
When I touched the correct spot he said sometimes people get fat deposits, “though you have a pretty thin foot.” Yeah, it’s not a fat deposit. I wouldn’t think those would be painful to the touch and render you unable to bear weight.
I know he’s got loads of patients and he’s doing his job and he’s trying to figure it out and be thorough. But I am still frustrated by the whole thing. The MRI didn’t seem to help him with anything. Well, it ruled some things out. It showed I do have arthritis. In case anyone is keeping track, I have arthritis everywhere we’ve looked so far: lumbar spine, hip, foot. So the prediction of arthritis by 40 with CP is spot on. It was probably there at 30.
We’re still proceeding with the AFO, just as we would have done without the MRI. I asked him, “Is this just for the right foot?”
He seemed surprised that I’d want anything on my left foot. I explained that usually, whatever happens on the right side of my body happens on the left eventually. And my left side is more affected and usually needs more support than the right. He did ask me to walk like three steps in our first appointment, and he asked me to take off my left shoe and sock and stand right then. “Yeah, that’s pretty flat.” And also, “Wow, your calf is really tight.” Yes, yes it is. Yes, I stretch it. No, that doesn’t do much of anything.
I tried to impress upon him that I do NOT want to wait until I have chronic, horrible pain on the left side too before we do anything for that side. I would like to PREVENT if possible. And I do sometimes feel twinges on that side that I’m trying to just let be whatever they are and not worry. I try to see my future with a walker or a wheelchair and see that future as absolutely okay. Because that may be where I’m headed, sooner than I’m prepared for. Thousands of people use different mobility devices and aids for different situations. I use poles now, and they won’t be enough if this foot thing progresses. So. AFOs coming up next month, at least for my right foot, with possibly some other kind of insert for my left. It would be lovely if they actually helped.
I have continued working with The Gupta Program. I have not had any other spectacular breakthroughs like the one in October. I still love meditating, and I do often have tingles and sensations on my jaw and neck and shoulders. But no big releases and no change in my throat. And I’m really tired. I’m supposed to just have faith that I’m on the right path and let all the fear go. Because “what you resist, persists.” I am supposed to accept and surrender and then my nervous system will calm down. It’s a lovely idea and it makes a lot of sense, but I am struggling with it.
I’m finding a central idea of the whole thing fascinating and quite the tangle. I said before that doing The Gupta Program feels a little like doing therapy on yourself. Because what you’re doing is calming your mind (or attempting to) whenever a worry or fear comes up.
Probably anyone who’s taken psychology or been to therapy already knows this, but if I ever learned, I don’t remember it. Apparently, humans have the core fear of Separation or Abandonment (from parents or the tribe). This then leads to fear of rejection (being unlovable) and fear of failure (not being good enough).
So, even though I had a pretty darn secure and loving childhood, there’s still this subconscious fear there. I mean, at some point as a kid I heard that long ago sickly babies were just left out in the elements to die. That stuck with me. Then I learned that Hitler first experimented with poison gas on the mentally and physically disabled. That stuck with me, too. And of course, it’s not just literal abandonment; it’s fear of failure. That, I totally get–I was absolutely afraid of making mistakes and doing something “wrong” as a kid, and that perfectionism has stuck with me.
My question is this: if it’s part of the human condition to have these deep, unconscious fears, even if we haven’t been abandoned or abused by a caregiver, then how are we supposed to truly convince our subconscious to let them go?
I keep telling my worried inner self that I’m safe (I can do that without lots of mental gymnastics now), that I’m loved, and that I’m good enough just the way I am (just like Mister Rogers said). But I don’t think my inner self believes me yet. I mean, consciously, I know those things. Apparently, though, I haven’t convinced my nervous system. It makes me really sad, actually, to look around and imagine each one of us carrying around these fears and worries. Being human is such a struggle.
May 2023 be a better year for all of us. May it be full of moments of peace and contentment, love and joy.
What Happened to Your Legs? 