homo superior in my interior

Unrepentant Artfag

[sticky post]READ THIS FIRST
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Endoscopy Update
I had the follow-up visit for the endoscopy today.

I can't remember if I wrote this here or not, but: the doctor said the day of the endoscopy that my gene test was "highly positive" (3 out of 4) and that if there was ANY irritation of inflammation in the intestine, that would lead to a positive diagnosis. They found inflammation in my esophagus.

The PA said that they found no problems in my intestine. This isn't really surprising because I have been almost entirely gluten-free since last August. But, she said that my combination of genes gives me a 60% chance of developing Celiac, and autoimmune hypothyroid adds 20% to that. That, combined with my symptoms, led the PA to say that yes, this is Celiac disease.

She also said I should get evaluated for adrenal fatigue and for candida overgrowth.

Stupid doctor, waste of time.
I wrote this last week, 4/15 but forgot to post it, so here it is.

So, the geneticist I saw last fall said that because of the scope of my health issues, I should get primary care from a place with a research component. She suggested the IM clinic at St. Joseph's Phoenix. Today was my first appt- I went in because I have had persistent tongue and throat pain for weeks. I have sores on my tongue (geographic tongue) and blisters, swelling, and tearing underneath it.

I tried to make an appt with their internist who specializes in chronic health conditions; she's not accepting new patients. The one who is into women's health is booked until May. So I took an appt with a different doctor, that was today, and it was a nightmare.

- She didn't take a full history, only a history related to my current medications.
- The history she did take, she coded wrong. The printout they gave me afterward said "menorrhagia" instead of "dysmenhorrhea".
- She argued with me about whether or not I have diabetes (I don't) insisting that IR= diabetes, when in fact it does not. Basically, if you have Type 2 diabetes, you have IR, but you can have IR without having T2.
- Although I was there for a throat pain, she prodded my abdomen and didn't even LOOK at my throat until I asked her to do so. Instead she referred me to their in-house ENT, which could take months.
- Abt the persistent tongue problems, she suggested I use Oragel. I explained that I am quite aware of my pain relief options, but I want to find and address the *cause* of the pain and lesions.
- Gave me a 4-question "depression assessment" and insisted that I have depression. Why? Because I fidget a lot and I have insomnia and am very fatigued. I pointed out that fidgeting is a symptom of my NLD and that I have been an insomniac since birth. She said that even without those things, the fatigue and oversleeping meant I had depression. I said, "I disagree; fatigue is a symptom of CFIDS that is easily misdiagnosed as depression." Why do I have to tell her this?

This kind of thing is why I stopped going to large, hospital-based practices in the first place: you become a cog in the system, not a person with health problems. She was totally uninterested in helping me with anything at all.

So, this was pretty much a waste of my time and money, and I am annoyed by it.

Common sense, or something else?
My mother and her mother both share a bizarre kind of helplessness. It's not the kind of helplessness, for example, typically associated with depression. It's weird, and it's been on my mind a lot lately. Is it a lack of common sense? Or what?

Here's an example: my mom does not repair things or get them repaired. It's like she doesn't  even understand that things can be repaired. I remember when I was a kid, she put an antique chair out for trash pickup. I asked why, and she said it was broken and couldn't be fixed, so it was no good. What was "broken" was the rope that wove the seat part of the chair. That's the kind of thing that could be fixed. But when I pointed that out, she started screaming at me that it couldn't be fixed, etc. It's also bizarre that my mom keeps the dumbest shit, all sorts of broken things, but threw out that chair.

Once the heat went out at our house, and it was out for awhile. My mom decided to make a fire in the fireplace. Instead of going out to buy some firewood, or even cutting some from outdoors, she went rummaging around in the spare room closet and brought out some wood from there, and tried to burn it. The problem was that this wood was actually a bed slat. It was something like 80 years old yellow pine, and it was LACQUERED. So, you know, the wood didn't actually burn; the lacquer scorched and smelled terrible.

When my grandmother died, I received the bedroom set she had recently inherited from her mother. It's a pretty little set made of some kind of solid wood with a burled myrtle veneer. My mom took it away when I was 18-ish. I asked for it back at one point and she claimed that my brother was "attached to it." Okay, whatever. Then when I was around 24 she called and asked if I wanted it back. I said sure, so she brought it to my house. The set included a chest of drawers, dressing table, nightstand, and a bench (the kind designed to sit crosswise at the foot of a bed.) The set was very damaged when she brought it over, but the worst was the bench: she literally delivered it in pieces, stuffed into a garbage bag. Inspection showed me that at some point the bench had been totally shattered and broken, and that she had tried to nail it back together by driving enormous nails through the veneer and. That didn't work, so she stuffed it into a garbage bag, with nails all sticking out randomly. I can't understand how this even happened.

She threw out a perfectly good sofa some years ago because "the fabric was torn." Yet she insists on keeping a broken clothes hamper from the 60s because "I have memories attached to this."

One day my grandmother washed her hairbrush. She wanted it to be dry so she could brush her or my hair with it. So she put it in the oven. We discovered it was melting when we began to smell it. This was the 80s. While it's remotely possible that my grandmother just didn't understand that plastic would melt, why the fuck did she put it in the oven? Who puts a hairbrush in the oven to dry it? Use a fucking towel, or set it on a table or something. It's just nuts. And, why does it have to be dry in order to brush one's hair with it?

I locked my grandmother's keys in the car when I was 8-ish. This was the Nissan Pulsar, which I have no idea why she bought, except that she wanted a third car, or maybe to use less gas than did her large cars. She left me in the car to go into a convenience store, I decided to go in and join her, so like a smart kid and as I had been trained, I locked the car door before I close it. It turned out that she had left the keys in the car thinking I would stay there.

Some nice men at the store used a coat hanger to unlock a door. They wiggled it in through the gasket on one of the rear "vent" windows, the kind that pop slightly open but don't open entirely. My grandmother claimed that this activity had "sprung" the window, and that it never closed properly again. This was my fault: the car was ruined because I locked the keys in it and getting it open "sprung" the window. It would never be the same. Now that I am an adult, of course, I realize that she could have taken the damn thing to the dealership and had it repaired or replaced.

There was no sense of reason in my home growing up.

I grew up in this strange crazy land, and upon encountering the rest of the world, nothing I knew made sense, and I didn't understand things that made sense to other people.

My mother has as an adult been diagnosed with ADD (though whether she actually has ADD is debatable) and I wonder if this could be an ADD thing. It seems somewhat in line with that spectrum, or at least what I have seen living with R, but it's not quite the same.

More Wheat Symptoms
Last night my legs started hurting. From about mid-thigh down to my feet, it all hurt all the way down. It was so painful, I had a hard time getting to sleep. Today it hurts less, with most of the pain now being in my feet and knees. I think this is probably wheat-related, and I hope it goes away very fast.

I also feel very weak and spacey today. Not sure if that is wheat-related or not.
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Wheat Trial

Very early Sunday morning, I ate some conventional, wheat-based doughnuts. The results have been powerful.

First of all, I've had intestinal problems ever since. When I first ate the doughnuts, I felt a tight feeling in my stomach. This is familiar to me from the wheat-eating days. Sunday my stomach was enormously swollen and bloated. It was extremely uncomfortable. The doughnuts have been gradually and unpleasantly working their way out of my body.

Second: appearance. When I woke Sunday ( I slept for awhile after doughnuts) I had big dark circles under my eyes. I used to have circles like this ALL THE TIME. They are actually worse today than they were Sunday. They are the purply kind of circles that look sunken but are actually a little puffy.

Third: pain. I woke up Monday morning in a lot of pain. Not only was my stomach hurting, but my left leg was hurting. Not the knee joint, but the muscle and bone near it, felt like I had a big bruise. This pain persists, and has spread to all around my knee; it kind of wraps around my leg, having spread to circle my thigh and down to right below the knee. Monday night, the skin above the painful area started to itch. Today, both legs hurt. My joints feel grindy/burny. Last night my hip was hurting for the first time since last summer; last spring and summer I had a lot of pain in my right hip, every time I laid in bed, and it's been gone for a long time. Last night it came back.

Fourth: neurological stuff. I've been brain-foggy and forgetful since Sunday morning. My mind is just not as sharp, I am back to forgetting things often, easily distractable, etc. I've also had thermoregulation trouble, especially when lying in bed. I sleep under a blanket, on top of memory foam, wearing socks, next to Bon. And it's not winter here anymore. Yet I've found it impossible to get warm, I've actually been shaking with cold. Then a little while after I wake up, suddenly I feel burning hot. I am used to feeling a little warmer when I start feeling awake, but this is HOT.

Not only did B notice the brain fog/memory stuff, but get this: he also noticed that I've been super-clumsy. He says "It's been non-stop you bumping into things, tripping over things, and hurting yourself since we got doughnuts." This came up Monday when I reached for a towel to dry my hands, and my hand went far north of the towel and collided with the cabinet above it. I said "Really, you've noticed that?" and he said "OH YES. I'm thoroughly convinced that wheat affects you neurologically." He claims that about every 15 minutes he hears me drop something, say "ouch", or curse. He has a point: between Sunday and today I have bumped, banged, tripped, gouged, and clawed myself, and I've been dropping things as well.

The last thing is that Monday night I developed a bunch of tiny blisters on the top of my forearms.

So, what if the balance problems and neuropathy I've been suffering from for years are caused by wheat?

My blood sugar has also been very unstable; Monday evening it suddenly dropped very low, out of nowhere. This is also unusual, I have been keeping it pretty stable for months.

An interesting thing about the balance and forgetfulness issues: these aren't things that went away overnight when I stopped eating wheat, like the joint pain did. These are things that gradually improved, so slowly I didn't even notice until I ate wheat and they came crashing back down. If I've had incremental improvement over 6 months, maybe I can continue to have improvement in other areas.

I've learned my lesson, though, and that lesson is that wheat does not agree with me. So now I know, and I hope that avoiding it leads to more improvements.

Serena Pie's Teeth
Serena Pie went to the vet this morning to have her teeth cleaned. It turns out she has "resorptive lesions", meaning that her infected gums have absorbed the roots of the infected teeth. Three were resorbed, so they cut the tops off of those teeth and sewed her gums shut over them. She is also missing some teeth and they think those may have resorbed too, but those were gone before we got her, so I am not so sure.

The vet said we don't know why these lesions happen, and that it might be genetic. The way to address it is to brush her teeth. So now we have to teach her teeth brushing. I'm also going to start giving each cat a chunk of meat to chew on once a week. And, she will need an annual teeth cleaning from now on.

She is home and seems to be feeling fine. The vet said to offer her half of her usual dinner; I did that and a few minutes later she came asking for more, so I went ahead and gave her the rest. She hadn't eaten in 24 hours, after all.

Bon held her while I applied some tramadol gel to her ear (pretty neat, huh?) SHe seems just a little tired, but not unhappy. Poor baby, though. She had a rough day.

I am annoyed to see that they gave her an injection of Convenia without consulting me about it. They are aware that I object to using Convenia except as a last resort.
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Kindness is Hard Sometimes
One of the things I've gotten good at in my 30s is being kind. I try really hard now to respond to anger and difficulty with kindness and compassion, instead of immediately becoming defensive. There are several reasons I do this, chief among them being that kindness is just more effective in general for my goals.

You know what? It's hard. And sometimes I get really tired of it. Presenting kindness, true kindness (not "kill them with kindness") in the face of other people's bullshit is really tiring sometimes. Sometimes, it feels deeply unfair: those times are when I offer kindness and receive meanness or evil in return, or when it isn't actually someone I want to deal with, but it seems that they need that kindness and have been put in my way so that I will give it to them.

6 months!
So, I have officially been wheat-free for 6 whole months. What a trip!

Being wheat-free has been an overall positive experience. Though it did not, as some suggested it would, cure or eliminate my chronic fatigue syndrome, it has had other positive outcomes.

The first one is the elimination of joint pain. I was a person who lived in pain every day. I hobbled around the house like a little old lady. The less wheat I ate, the less I hurt. Going wheat-free has made my life a lot less painful.

The second one is brain fog. I am less foggy and forgetful than when I ate wheat.

I'm probably going to stay wheat-free for the foreseeable future, but tonight I'm going to eat a doughnut and take careful notes over the next week WRT to my pain levels and other stuff.

So now my task is to get to the bottom of this: do I have celiac disease? Do I have a different immune reaction to something in meat? I don't know.
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Wheat free home stretch
So, I am in the early 6th month of being wheat-free.

I really miss doughnuts.

So far, I have not been miraculously cured of my CFIDS/ME. But my FMS is much, much better than it was when eating wheat. I'm also much more tolerant of cold. R noted when I was at home that I seemed more clear-headed in the mornings, more awake.

At the end of this month, I plan to have a few doughnuts and see what happens. Will my joint pain return? If I notice ill effects from the wheat, I will go back off of it for good.

I am also going to talk to an immunologist about the possibility of celiac disease, and maybe get scoped. I also want to get tested for reactivity to WGA and a few other things. I want to know what is going on.

The last couple of weeks, I have noticed that I am feeling less tired. Is it just the time off? I mean, I've been out of school for more than a month now, and I have mostly been relaxing. Or is it that this is how long it takes to recover from Celiac-induced illness? It turns out I have a lot of Celiac symptoms I didn't know were symptoms. Nutritional deficiencies, peripheral neuropathy, geographic tongue.