I've never chronicled a flare up before, and it occurs to me that having a record is a reasonable idea, if for no other reason than the next time this happens I can go back and see when this time happened. I'm really bad at writing things down as they occur.* The other reason this seems worth doing is that I kept looking around online to find other reports of EDS flare ups and didn't uncover a whole lot. So I might as well add to what meager collection of info it out there for others to find.
This flare up started around June 10 with severe stomach pain. Like, I've-been-stabbed-in-the-stomach severity stomach pain. I usually take a low dose of omeprazole when this happens, but at the time I was visiting my parents and didn't have any. I took everything else they had. Rolaids, Tums, even some Zantac my father still had because he missed all the recall notices that flooded the internet a few months ago. Pepto Bismol. Nothing helped. Gasping pain so bad it woke me in the middle of the night and I thought about whether I'd need to go to the hospital this time. Eventually I got to the store and bought omeprazole, ripping the package open and swallowing a pill dry in the parking lot. It helped. I don't know why only this particular med helps, but I've stopped trying to reason with that kind of pain.
For the curious -- yes, I've had it checked out. I've been scoped and CT'd and examined from here to Sunday. There is nothing wrong. Nobody can see anything. They never can. I did, once, have an ulcer that was healed, but beyond that, there is no explanation for my symptoms.** Except, of course, that I have EDS and it does strange things to you.
A day or so later, my hands started to hurt.
Ten years ago, after my daughter was born, I developed "babywrist." The contortions I went through to keep using my hands led to golf and tennis elbow, and eventually a strained left shoulder. None of these ever healed fully, though I did regain use of my hands and they don't bother me often. My elbows and shoulder hurt nearly always. One of the hallmarks of Ehlers-Danlos Syndrome (hypermobility type) is that, once damaged, connective tissue just doesn't heal. So it's important to not get damaged in the first place, which is challenging when you want to have a life.
But now my hands were hurting again. Just a little. I thought it might be attributable to an overabundance of work with the pruning shears when I took out a bush in the back yard. That wasn't it, of course, but by the 20th or so, I was pulling out my old babywrist braces because they helped me remember to not try to do stupid things with my hands like turning doorknobs or unbuttoning my jeans.
By this time, everything hurt. Fingers, hips, knees, neck...everything. The plantar fasciitis in my left foot (it was my 5 year anniversary! Remember that thing about not healing?) was exquisite. The brace I wear for it at night caused numbness followed by wicked pins and needles, which was new. My skin hurt. The skin on my left arm where I wore the arm brace felt like I'd rubbed it with sandpaper and coated it with that feeling you get when you whack your funnybone. Every time I stood up I had to either sit back down, or pause where I stood till the dizziness passed and blackness cleared from my vision***.I started taking high doses of Celebrex to help with the inflammation, and full doses of omeprazole to help with the side effects of the Celebrex.
Even so, I spent every morning waiting for painful cramps to send me running to the bathroom where it felt like everything I'd ever eaten was leaving my body, along with half my insides. Fortunately, the exodus was usually done by noon, and after a rest, it didn't bother me much for the rest of the day. I was, however, hyper-sensitive to all the foods I can usually eat a little bit of without too much trouble. Not now. Even small amounts of dairy, or food-gums caused painful bloating.
By the 27th, I was a wreck. Sleeping hurt. Not sleeping hurt. Moving hurt. Baths helped, but there's only so much time you can spend in a bath tub.
Then, on the 28th, it started to let up.
Today is the 29th and I was able to turn the ignition on my car without using both hands. I'm still wearing braces on my arms, but the pain is receding. I have no idea why. It's still there, but it feels like maybe I'll see the back of this in a week or so.
I don't know what brought it on, or what is causing it to taper off.
I wish I knew.
I'm not looking forward to the next one.
*especially when it comes to putting things in the freezer. Like, every time I think "oh, I'll remember putting this in here. This was some memorable stuff." No, it wasn't. It's never memorable stuff. Three months later I'm looking at some frost- encrusted chunk of something, going "what the hell is this?"
Every. Time.
**If you're considering telling me it's all in my head, or I should change my diet, try yoga, exercise, breathing, gratitude, supplements, etc please feel free to keep your thoughts to yourself. I've heard and tried everything you might care to suggest.
*** My kids are so used to seeing this now they just wait for it, sans comment. They know what it means when I'm "out of spoons." In a way, I hate that this is "normal life" for them to see, but maybe it will end up with them being more aware of and compassionate towards people with disabilities, so it's not all bad.
†People with EDS are often called "zebras" since our issues are not the "horses" doctors are taught to suspect before moving on to more exotic diagnoses. The trouble with this, of course, is that many people with EDS aren't diagnosed till after having symptoms for years or decades, if at all. So the title is just a super funny joke for all those with EDS. You're welcome.
disapproving kitty
Monday, June 29, 2020
Monday, June 15, 2020
Just a Recipe (without all the fol-der-al first)
I don't think I've ever posted a recipe, but I'm posting this one so I don't forget it. I read several recipes on the internet and didn't find one that a) had all ingredients I could eat and b) had ingredients I had on hand and c) used flavorings I really liked so I put this one together. It turned out fabulous.
Rachel's Not-Really-Thai-Fried-Rice-Paper-Rolls
(low FODMAP recipe)
Ingredients
Rice paper wraps -- The square ones seem easier to use, but use whatever kind you like)
1 lb ground chicken*
Green onion, chopped (just the green bits, about 1/4 cup worth)
2 large carrots, shredded (reserve a small amount for garnish)
2 celery stalks, shredded (I put both into the shredder of the food processor together)
1/2 cup cooked Vermicelli rice noodles
1/2 - 3/4 tsp curry powder
1 tsp salt
1/4 tsp red pepper flakes (optional)
1/2 - 1 tsp Thai fish sauce
1/3 c crushed peanuts (reserve a small amount for garnish)
1/4 c fresh cilantro sprigs (reserve a small amount for garnish)
3 - 4 T garlic oil**
1/3 c rice wine/lime juice mixture (sort of a lime vinaigrette - this is to add some needed acidity. You could also use any sort of light vinaigrette you like)
Cook the rice noodles as directed on the package. Drain and set aside. I used a single packet of them and it was more than enough.
Fry the chicken in a large pan. Use a spatula to work the meat into little crumbles. Add in the onion, celery and carrot and fry until all the meat is thoroughly cooked through. Add in curry powder, salt, fish oil and pepper flakes. Stir together on low heat for a couple minutes. Adjust seasonings to taste.
While the meat mixture is cooking, prep the rice paper wraps. I put them one at a time onto a large plate on a wet paper towel, then spread more water over the top of the wrap and let it rest 2 - 3 minutes till it softened. To make things go faster, I had 2 plates going at once. They get very sticky.
In another large frying pan, heat the garlic oil on low heat, about level 3.
On a softened wrap, put about 2 T of the meat mixture in a line about 3 inches long, about an inch from one edge. Adjust according to the size of your wrap, and your filling preference. Lay some of the rice noodles on top of the mixture. My ratio was about 1/4 noodles, 3/4 mixture. Sprinkle with a layer of crushed peanuts and a sprig of cilantro. Roll the paper around the filling, tucking in the ends till you have a tube about 3 - 4 inches long. This takes a little practice.
Put the roll into the hot oil. Keep the heat low. If you cook too fast, the paper will split. Fry for about 5 - 6 minutes on a side, and turn over with tongs. You can add as many rolls to the pan as will fit, but don't let them touch each other as they will stick together.
I've read that you can't deep fry them or they'll just split, but I've never tried it. I've never tried air-frying them, either, but you probably could if you brushed them with oil first.
Once fried, pull from the pan with tongs and put onto a plate with paper towels to soak up extra grease.
Once plated, sprinkle with about 1 T of rice wine vinegar, and garnish with crushed peanuts, cilantro and a few carrot shreds.
Serve with a small cup of vinegar on the side for dipping. You can also use tiny amounts of hoisin sauce for dipping, too.
They don't really re-heat well, so don't make extras to save if you can help it. Re-heating in the oven might work. Microwave doesn't.
*You could probably use ground beef or pork, too. I've also seen recipes that added minced baby shrimp. The meat could entirely be your favorite mushroom, too, or possibly even crumbled tofu.
**Garlic oil - I use this instead of garlic because garlic contains fructans, which I cannot eat. To make garlic oil, heat a small bottle's-worth of oil on the stove in a pot. Add about 2 heaping tablespoons of chopped garlic. Cook till the garlic starts to brown. Strain the garlic out of the oil into a glass container. Allow to cool. Store in a labeled bottle. Never just put raw garlic into oil and use that. You could get food poisoning from it.
Rachel's Not-Really-Thai-Fried-Rice-Paper-Rolls
(low FODMAP recipe)
Ingredients
Rice paper wraps -- The square ones seem easier to use, but use whatever kind you like)
1 lb ground chicken*
Green onion, chopped (just the green bits, about 1/4 cup worth)
2 large carrots, shredded (reserve a small amount for garnish)
2 celery stalks, shredded (I put both into the shredder of the food processor together)
1/2 cup cooked Vermicelli rice noodles
1/2 - 3/4 tsp curry powder
1 tsp salt
1/4 tsp red pepper flakes (optional)
1/2 - 1 tsp Thai fish sauce
1/3 c crushed peanuts (reserve a small amount for garnish)
1/4 c fresh cilantro sprigs (reserve a small amount for garnish)
3 - 4 T garlic oil**
1/3 c rice wine/lime juice mixture (sort of a lime vinaigrette - this is to add some needed acidity. You could also use any sort of light vinaigrette you like)
Cook the rice noodles as directed on the package. Drain and set aside. I used a single packet of them and it was more than enough.
Fry the chicken in a large pan. Use a spatula to work the meat into little crumbles. Add in the onion, celery and carrot and fry until all the meat is thoroughly cooked through. Add in curry powder, salt, fish oil and pepper flakes. Stir together on low heat for a couple minutes. Adjust seasonings to taste.
While the meat mixture is cooking, prep the rice paper wraps. I put them one at a time onto a large plate on a wet paper towel, then spread more water over the top of the wrap and let it rest 2 - 3 minutes till it softened. To make things go faster, I had 2 plates going at once. They get very sticky.
In another large frying pan, heat the garlic oil on low heat, about level 3.
On a softened wrap, put about 2 T of the meat mixture in a line about 3 inches long, about an inch from one edge. Adjust according to the size of your wrap, and your filling preference. Lay some of the rice noodles on top of the mixture. My ratio was about 1/4 noodles, 3/4 mixture. Sprinkle with a layer of crushed peanuts and a sprig of cilantro. Roll the paper around the filling, tucking in the ends till you have a tube about 3 - 4 inches long. This takes a little practice.
Put the roll into the hot oil. Keep the heat low. If you cook too fast, the paper will split. Fry for about 5 - 6 minutes on a side, and turn over with tongs. You can add as many rolls to the pan as will fit, but don't let them touch each other as they will stick together.
I've read that you can't deep fry them or they'll just split, but I've never tried it. I've never tried air-frying them, either, but you probably could if you brushed them with oil first.
Once fried, pull from the pan with tongs and put onto a plate with paper towels to soak up extra grease.
Once plated, sprinkle with about 1 T of rice wine vinegar, and garnish with crushed peanuts, cilantro and a few carrot shreds.
Serve with a small cup of vinegar on the side for dipping. You can also use tiny amounts of hoisin sauce for dipping, too.
They don't really re-heat well, so don't make extras to save if you can help it. Re-heating in the oven might work. Microwave doesn't.
*You could probably use ground beef or pork, too. I've also seen recipes that added minced baby shrimp. The meat could entirely be your favorite mushroom, too, or possibly even crumbled tofu.
**Garlic oil - I use this instead of garlic because garlic contains fructans, which I cannot eat. To make garlic oil, heat a small bottle's-worth of oil on the stove in a pot. Add about 2 heaping tablespoons of chopped garlic. Cook till the garlic starts to brown. Strain the garlic out of the oil into a glass container. Allow to cool. Store in a labeled bottle. Never just put raw garlic into oil and use that. You could get food poisoning from it.
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