There's a New Yorker cartoon I saw recently where a woman is sitting at a computer. Her husbnd walks by and asks, "How's the self-diagnosing going?" I can relate! Well, I'm in this phase of waiting eternally for the real diagnosing to happen, and meanwhile feeling pretty crummy. Yesterday I had a really bad episode– got freezing cold, started to have visual weirdness, things glowing and rippling and was very weak and dizzy. Of course at the same time I was also home alone with two semi-sick boys. They came in and jumped on me now and then, but most of the time were fairly okay about my needing to rest.
I attribute yesterday's event to an attempt the previous night to eat out at a normal– not insanely compulsively natural– restaurant. It was our date night and Ben had grown weary of eating at the one place where I feel safe to eat, the Mustard Seed, which is really a natural foods grocery store with a cafe in the back, and the florescent lighting and view of shoppers is less than date like. So I decided to give it a shot. Also on my overall migraine diet plan, I'm nearing the phase of trying things to see what might be safe.
Answer: MSG is not safe. Although we tried hard to think of everything and order something safe, it was impossible. I got pasta with no romano cheese, only approved vegetables, and non-marinated chicken, but it came with a sort of broth around it that was not described and it was pretty certain to be MSG city. I decided to roll with it and see what would happen. When we walked out I found the complexity of the tile floor to be a real problem– which it was not when I walked in, and then yesterday was no picnic. I had to finally take half an antivert and several other evasive maneuvers. So… live and learn. I also tried and failed at chocolate. But the young cheeses, like fresh mozzarella, cottage cheese, cream cheese, Laughing Cow and such, I seem to be able to get away with.
So I feel that the migraine thing is true. The diet is helping. I used to feel like that all the time, and now only when I screw up. The POTS thing also seems very true. I do get quite cold, my hands go white, my fingers shrivel up like I've been in a bath. As to baths, I learned the hard way that they are not a good cure for the coldness. Sure, they warm me up. But by pushing all my blood to my extremities, such that then there really really is not enough left for my brain. I had one experience a few weeks ago of trying the bath option and found that remaining conscious was a real challenge, as was getting safely to bed, whereupon I had to lie down a long time, with my heart beating like a rabbit's.
OVer the last few weeks, unfortunately, I've been reading too much on the internet. I was looking at this list of possible causes of POTS (there are 26 items on it, and they say "these are but a few of the possible causes…" which explains why they couldn't treat me until they find out more) and I found this thing called Ehlers-Danlos Syndrome or EDS. Now I'm getting myself all distressed and thinking I have it. I hope this is just another case of someone trapped in a house for three days with sick children (mildly sick, but too sick for school) who is reading too much nonsense and scared of her own shadow. But I got myself freaked out enough that I called the drs to tell them that I have a lot of the things that go with EDS.
Such as– 1) some hypermobile joints. My knees and elbows hyperextend; I've had a toe dislocate roughly four millions times, and a dislocated jaw, and a ligament injury; 2) hiatal hernia (where the stomach actually goes up into your esophagus, this being what likely caused my chest pain a while back); 3) pregnancy problems including lots of crazy bleeding and miscarriages; then I found this part that said that people with POTS and EDS are "usually female and very pale…" What I don't have is this funky skin that goes with it, that is very stretchy and doesn't heal right. My skin is normal (although pale as the driven snow). But EDS type III doesn't have the skin… The reason it relates to POTS is the idea that basically the whole person is too stretchy. It's a collagen problem, with all the connective tissue. In people with POTS it's that the blood vessels in the lower extremities are too stretchy, and so fill with blood that rightfully belongs in your brain.
So last week I told both the neurologist's asst and the cardiologist's asst that I have all these things. (I also went through the list of other weirdness about me, like I have 8 wisdom teeth and a bicornuate uterus, which apparently are irrevelant). They both seemed to get what I was concerned about. The neurologist's asst asked me several follow-up questions about my dislocated jaw. But as for now they both basically said simply, "I'll tell the doctor." So… now I wait on that as with the rest, for the big reveal next week. I tried to put it out of my mind, but moth to flame, I keep learning more about it.
Okay, so let's all put this out of our mind. It's not a good thing to have and it's the last thing that I need at this point, so just forget it!! All right? Yes. Boom. It's forgotten. This whole conversation didn't happen. Phew. That's better!
As for the other sickly person in the house, Isaac, I took him to the dr on Tuesday. I was concerned that he had an ear infection or something else that would need treatment for him to pull out of the illness doldrums he's been in for a week. (He had a fever on Friday and Saturday, along with an ear ache and cough, and then just went into his pallor and lingering illness stage.) The dr said that his ears are fine, but he has what she termed a "two-week virus." She said he had to stay home from school yesterday (which was skiing day), and today Thursday would be a question mark. If not better for school tomorrow he's supposed to come back in. So yesterday Isaac was fairly subdued, for him. Which means that he would run around like a crazy person for a short time and then keel over for a long time to recover. He fell asleep at about 4:00 in the afternoon, and then simply would not wake up. I dreaded being up all night with him, wrung out as I was with my migraine episode. Elias too got into the act, coughing, having an ear ache, falling asleep at 5:30 and refusing to wake up no matter what happened.
Fast forward to 2:00 a.m., when surprise! Everyone woke up. Isaac at that point had slept 10 hours and was pretty thirsty and hungry. Elias woke up because Isaac was up. So we were all up. I got Isaac a snack and Elias some milk, and then spent the next two hours trying against all odds to get everyone to go back to sleep again, lest I die of exhaustion. Amazingly, they did go back to sleep about 4:00 a.m., but then, not amazingly, they were in no shape to get up on time and confront the frigid world and school. Elias's head is very congested and he's still coughing. Isaac is coughing and pale and seems to roam from couch to couch. So we are housebound again today, hopefully the end of it. …