Before this painkiller runs out on me, I thought I’d squeeze in a blog post. Because of the immense facial pain and carpal tunnel pain, I’ve been unable to keep up with friends and readers alike. I’ve never felt so isolated, especially living away from home, from New York, for the first time in my life ever. I find that because so many friends, family and readers alike were already confused as to my general health, the speedy degeneration of my health the last 10 months has left many completely flummoxed. Unfortunately, as soon as that happens, many just disappear off the radar. My friend says this is finding out who your real friends are. I told her that’s an extrovert’s nightmare and I’d rather not know who my “real friends are.” 🙂
Instead of writing these days, I’ve made it my mission to get to the more manageable state I was in 10 months ago and perhaps, hopefully, to a better place than that. I thought where I was 10 months ago was really pathetic until I ended up where I am now. This is my full-time job…in case anyone’s asking which, of course, they do ALL THE TIME. What is it about “my whole body hurts” and “I’m disabled” that causes people to ask “Do you work?” and “Have you tried volunteering?” Sometimes, I think I’m speaking a different language nobody except people in ill health or friends with family in ill health understand.
Of course, to get better, I’m going into debt AGAIN because though my health insurance here in Los Angeles is a thousand times better than my healthcare in New York, my husband continues to be underemployed despite jobs at two Jewish schools (please pray for us) and those co-pays and such really stack up. Last week I had eight doctor’s appointments with co-pays ranging from $20-$200 that will thankfully drop to $3-$20 (except for the dentist at $200 a weekly visit) once my cruel, cruel, CRUEL deductible is met. Every week/month, I’m visiting the allergist, the acupuncturist, the physiatrist, the dentist (for TMJ/Migraine therapy, which is freaking awesome in case you’re wondering!), the massage therapist, the psychotherapist (to remind me that whatever everyone else thinks, it’s my health that is insane, not me!) and whatever other doctor can repair whatever’s fallen apart that particular week. As a friend pointed out today, for many of us, being healthy and staying healthy can be a very expensive habit however important and necessary it may be.
I’ve lost about 10 of the nearly 20 lbs., I gained after the digestive crisis of the last 10 months. People want me to sue the “baby” student dentist at Columbia Presbyterian Hospital’s dental clinic who put me in this current condition but three years of fighting for custody of my sister is more than enough courtroom time for me. Besides, I’d rather spend time getting to a place where I can walk more than a mile without feeling like I’m dying. As it is, I haven’t been admitted to the emergency room since November and I’m finally able to eat a regular diet…for the most part. Or well, a very, very careful diet for someone with my particular, varied stomach issues. I consider myself lucky to be able to nibble on some chocolate without dying or being hospitalized. In September and October, I felt like I was dying from the abdominal pain and the awful whole body pain, especially muscle and joint pain flare-ups, it was causing. And that’s from someone who is such an overachiever, she has all 18 active trigger points necessary to qualify for a fibromyalgia diagnosis!
The doctors out here are amazing. They make me want to cry. Do they know that most doctors are NOT like this? I haven’t met a terrible doctor yet out here whereas in the first six months before my fibromyalgia diagnosis, I met just about every awful one imaginable in upper and mid-Manhattan. Despite all this, it took moving here before anyone realized one of my major problems was a genetic joint and connective tissue disorder that is already causing some problems for my family members and would have caused more problems for me if I had continued to believe that I only had fibromyalgia and all the computer work I was doing wasn’t causing “permanent damage.” Someone with my condition doesn’t need to get in a car accident to be in as much pain as I am in daily (people always ask if an accident is what got me where I am today), they need only be a workaholic doing jobs and everyday tasks that put incredible, terrible stress and strain on my joints and the surrounding muscles.
I remember when the pain first started and it was a mere irritation. I was 18 and a nasty neurologist told me I was depressed and it was in my head. (At age 25, another one said the same thing before yet another finally diagnosed me with fibromyalgia.) Later, I would be diagnosed with carpal tunnel and repetitive stress injury by age 20. I’d never had such troubles before I started using my first computer at 18 in college. In fact, I had been drawing since I was three years old and the repetitive tasks involved never hurt one bit.
At 20, in college, I was running for the subway to get to my third part-time job and I felt my knees pop, twist and go in the opposite direction until I collapsed in a heap. My knees were never the same again and like then, after years of doing alright, I have trouble standing, walking and even sitting…again. I can dislocate my knees just by walking. Only a bicycle or a pool makes me feel weightless and painless (except for my ever angrier hips). The ER doctor noted to me at age 20 that I should never gain weight and likened what was inside my knees to J-E-L-L-O. Cut to 10 years later, 32 lbs heavier from chronic, disabling whole body pain and a name for the never-ending knee/hip/butt/ankle pain: patellofemoral pain syndrome. But I refuse to let it turn into osteoarthritis like my mother’s. I don’t want to go down like that at age 50. You hear me, G-d? I refuse.
There’s even a name for the pain that forced me to stop covering my hair completely but still earns me snide, judgmental comments on a constant basis: occipital neuralgia. A common symptom is something called “the ice pick headache.” Nice. When my physical therapist taught me how to use my new TENS unit, she told me not to put it anywhere near my eyelids. She said this as a joke mostly but said it had been stressed to her in physical therapy school. I said that this was probably because there is nothing like the pain you can feel around your eyelids and eyeballs where it feels as if an ice pick is coming OUT of your head and out your eye. She said, “Wow.” That’s the same reaction I got from the doctor who figured out I had joint hypermobility when I did something I never do anymore…I let him shake my hand. Then he tested all my other joints and said, “Wow!” while the other doctor he referred me to said, “Whoa!”
People ask me all the time when I’m going to get back to writing. When I tell them about the carpal tunnel, they tell me about Dragon Speaking Software as if I’ve lived under a rock the last 10 years and never heard of it. Then I tell them about the facial pain and they make some awful joke about how I’m falling apart or I belong on a “special bus.” I understand that their twisted humor is a sign of their discomfort with my illness and illness in general but seriously, why don’t disabled folks get more respect? Why is it that the people who respect me most are the elderly who literally feel my pain but are horrified that what they feel could manifest itself in someone so young?
Instead of writing, I get weekly allergy shots. I probably should have gotten them my whole life but my mother was busying selling my allergy medication to put food on the table and get us school supplies. One doctor here noted that someone doesn’t get as allergic as I am to some things unless they’ve grown up in a slum covered in things like cockroaches and such. Y-U-C-K. Another doctor noted that chronic malnutrition and heavy doses of antibiotics as a kid didn’t do my stomach any favors. But the major thing will be working against an accident of birth, structural problems with my body on top of (and possibly caused by) this joint disorder that has pissed off my immune and central nervous system.
So again, no, I am not pregnant, people. She doth not protest too much, right? Apparently, that’s what people were “reading between the lines” when they read “focusing on my health and family.” Unless a miracle happens, I might never be pregnant or I might get pregnant but it would make the last 10 months look like a picnic. I didn’t imagine in September I’d be anywhere near healthy enough to write this post but I believe that it helps that I’ve got people worldwide praying for my health. Please continue! Aliza Moriah bat Sara. Please don’t pray for me to have babies, pray for me to be healthy period.
I wish I could devote a whole post to finding out this past Christmas Eve that my maternal great-great-grandmother was a Turkish Jew from Manisa!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! If this is true, then my 98-year-old great-grandmother is a Jew. My grandmother is a Jew. My mother is a Jew. My sisters and I were all born halakhically Jewish. And my aunt can go on J-Date. That’s the family joke now anyways. One family member said, “Well, that’s fantastic news. I never had a problem with being Jewish, just with being Catholic!” My rabbis don’t seem too excited by this new information (one said it would be a great story for a conversion book or my memoir if I ever finish it) or the job it would take to prove this all on a genealogy quest but my friends who have also endured the long, arduous Orthodox conversion process air hugged me like nobody’s business. After all, it’s not every day you find out you ran away from home, kidnapped your sisters, fought for custody of them and won, converted to Judaism, married a rabbi and found out years later you’d already been Jewish in the first place.
I started this blog in 2005. I am a different person in a different place in a different city in “a different body” now in 2011. Even a different religion. Married to a rabbi. (G-d hears everything. You make ONE joke about wanting to marry a rabbi during the conversion process and well, there you go!) G-d willing, I will surprise myself, my doctors and especially my sister who wisely noted that if I kept living the way I was living and ignoring my health, I wouldn’t make it to age 35. Well, look out 2015 because I’m coming for you!
Tomorrow I get my first (and hopefully last) cane. My husband joked this makes me Cane and him Able. Rabbi jokes. Sigh. My physiatrist warned people might stare at someone so young (I’m 30 but sometimes I barely pass for 18) but I told him that my SUPPOSEDLY “invisible disability” has already gotten me plenty of stares, sneers and such. I care more about not falling down the stairs and not having to explain every single time I request disabled seating at the movie theater to grit my teeth for a 2-hour movie (“moviegoer’s knee” is really moviegoer’s body for me!) only to sit next to the lady who asks me to go sit on the stairs because my pain management stretches and exercises are “annoying her” and “shaking the seat.” Lady, I’m not as small as I used to but I’m not a freaking tsunami doing back and wrist stretches either. Thankfully, SHE moved to sit on the floor though she continued to give me her dirty looks from there.
NOTE: As I reiterate numerous times whether I post about my health, please subvert any desire to respond to this post with a suggestion of “things I should try” for my health. I will ignore and delete any such comments whether they are posted here or emailed to me directly. If you are confused as to why, click on the “chronic pain/fibromyalgia” tag and read ALL of the previous posts.