Sunday, March 24, 2013

Shabbat - 7 Years Ago and Now

Seven years ago today, I was preparing for my Shabbat Kalla, which was a little bit of a disappointment.

(It's ok, the wedding was not!)

In that time, a lot has changed.
I have a husband who I am no longer just infatuated with, but actually know and love - with all his quirks (And he has almost as many as I do).
I have an amazing stepson and two children of my own.
I have a new sister (adopted) who is just a year younger than I am.
I have 11 new nieces and nephews (including the one who was born the next day).

This past Shabbat, I got my dream Shabbat - my whole family was together. Every single person from my side of the family got together at Yad Binyamin. While it wasn't a 5-star experience*, the place was calm and peaceful, and the kids got to play with their cousins for a whole Shabbat in a place with no cars. My kids got to run around freely for the first time pretty much ever. They kept going in and out of each other's rooms, playing with different cousins (fighting with different cousins). We sang together, read Haggadah together. Ephraim, Abby, Asher, and Elazar sang ma nishtana (the four questions), and they did really well, even if there was a little confusion.

My dream of having children who could play with Rachel's children has come true. Kinneret and Nomi are friends, and Ephraim & Yirmi are getting there (they have wildly different personalities, but both are so cute and wonderful that I know they'll be friends soon). Ephraim is currently in love with his cousin Ayala - he seems to think she was meant to be his big sister, and she thinks the same. :) As for cousins their age, Ephraim goes to gan with one of his honorary cousins this year, and will (probably) be in gan with another next year. His cousin Nomi Elisheva is 2 weeks older than he is. Kinneret has a cousin Shira (on my side) who is a year older than she is, and a cousin Shira (on Yaakov's side) who is just a day older than she is.

My older nieces and nephews helped with the kids, reminding me of when they were little and I helped their parents take care of them. I watched them grow up, and now they're having the same experience with my children.

To top it all off, we were staying in the moshav where I attended camp when I was 14. Kinneret and I found my old dorm and walked through some of the places where I walked 20 years ago.

All my life, I've been blessed with a fantastic family. In the past 7 years, I've built my own new family, and few things give me as much pleasure as spending time with my whole gigantic family all together!

*If you're looking for a place for a family Shabbat, Yad Binyamin is nice, but I'd recommend calling in advance to verify that they intend to serve more than 1 piece of chicken or 1 slice of roast beef per person. The rooms are not fancy - rustic might describe it, but they're set up well for a family of 4 - 2 rooms with 2 beds.

Sunday, March 03, 2013

But Can He Walk on Water?

For about ten years, I've been suffering from fibromyalgia.
It sucks.
There are real miracles, though...
I've been in pain pretty much constantly, tired, lacking energy.

The psychological aspect is somehow worse - People see me as the type of person who's lazy, sleeps, sluggish. That's actually not who I am. I'm a bubble of energy. I used to get up at 6:30 when I only had to be at the bus stop at 8 because I liked hanging out at the bus stop with my friends.

My favorite place was the pool. I was always trying to improve my stroke, do more flips, always in motion. I'd walk anywhere with friends. I remember the hardest part of Shabbat morning being that I wanted to DO SOMETHING, GO SOMEWHERE. I once walked three miles along nasty highways when I was in highschool, just so I could hang out with a friend on Shabbat.

Saturday nights, I'd watch Saturday Night Live, go to sleep at 1:00am, and wake up raring to go by 8:30. Sleeping in meant sleeping all the way until 9am. I couldn't understand how people could sleep away their days.

That's who I was. And then my thyroid died. Sixteen years ago, I suddenly went from the person who was dying to get out, move, do something to the person who just wanted to sleep through life.

I trusted my doctors. I didn't really know any better. I read an article online about myxedema coma and got so scared that I didn't want to know any more.

I've been gaining weight, the pain's been getting worse, and I've had less and less energy.

I started really doing research about what is helping people who have fibromyalgia, brought information about new experimental treatments to my doctor, but he wasn't eager to run a lab experiment on me.

Finally, I found a doctor who is willing to try experimental treatments. I'm feeling better.

Here are the changes:
First, and I suspect this is most important, he added t3 to my thyroid regimen. Basically, the thyroid produces t4, and the t4 is changed into t3 in the blood. T3 is one of the things that fuels the body, so it's pretty crucial. Standard treatment is to provide t4 and assume that the body will turn it into t3 (Synthroid, eltroxin, euthyrox - all t4, not t3). Almost immediately, I started feeling more alert when awake, and I'm fairly certain that's the action of the t3.

Second, pretty much everyone has a vitamin D deficiency. I did know I had it, but this doctor decided to increase my vitamin D doses by quite a lot (I'm taking 4000 iu now, compared to 400 that my regular doctor prescribed)

Third, even though my ferritin was within normal limits, he said it was on the low side, so I started taking an iron supplement (this is one supplement where not all are created equal, I had to shop around a bit to find one that didn't give me really serious digestive issues).

Fourth, I am no longer taking any painkillers, but I am taking hydrocortisone daily (20mg), which is supposed to boost my adrenal system. (Not sure I believe in that)

Fifth, and this is what he claims the 'treatment' is, he gives me guaifenesin, which, according to a theory laid out by Dr. St. Amand, removes excess phosphates from the body.

I looked up this article which thoroughly debunks that theory. There are, however, two other theories as to why guafenesin works - one is that it helps clear the airways during sleep to promote better quality sleep. The other is that guaifenesin is actually known to be a muscle relaxant and to improve pain relief.

Here's the thing - After 4 months, I can live my life without the etopan and tramadol that I was taking daily to keep the pain bearable. Can I say with certainty that guaifenesin is helping? nope. Can I say that I'm doing better? YES! Very much.

It might just be because of the t3. A few years ago, Stanford University conducted an experiment to see if doses of t3 helped with symptoms of fibromyalgia. I can't find the results anywhere.

At any rate, I can't swear that any one part of this is working. But I am better. So I'm not seeing the splitting of the Red Sea, water coming from rocks (though you can find that on 443...). I'm not sure why it's working, but I am better. I am better.