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.

http://trilcat.blogspot.co.il/2006/03/wishing-i-could-write.html

(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.

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.

Bad Eats- Good Swim

Breakfast
Milky (pudding with whipped cream)
tea with milk & sugar

Lunch
Mac & cheese

Mid afternoon snack:
mac & cheese (too much)
Reeses Pieces (way too much)

Supper
1/4 Chicken

I swam 30 today, and it went really well. I felt good after the swim.

Sunday-Tues

Sunday:

Breakfast
Mocha
Grapefruit juice
Omelet
Tuna salad
Light bread.
Cream cheese


I don't remember lunch, there was definitely a cup of tea.

Dinner: Chicken & way too much rice (though at some point, I realized I wasn't hungry anymore, and I threw the rest in the trash)


Monday:
went swimming, did 12. :(
Breakfast was a yogurt shake.
Lunch - sour cream with a bit of sugar.
Dinner - eggs with cheese, tivol hot dogs, popcorn (a whole bag of microwave popcorn)

Tuesday
Breakfast : sour cream with sugar, cup of tea (with milk & sugar)
Lunch: couscous with vegetable soup
Dinner: couscous with vegetable soup

Overall - medium. no point in weighing in yet. I'll try to hit the gym tomorrow and weigh in there.

Overall, I'm feeling very tired. The swim was helpful for my pain. I'm having a hard time falling asleep... restless legs and tight muscles at night.
I sent an email to the specialist (Dr. Kurland in Kfa"s if you're curiosu), but he hasn't answered yet. I'm seeing him again in around a month. We'll see how things are then.

t.c.

Dieting Again

Starting over...
The goal is a little different this time.
I'm supposed to keep it low-carb, but I'm allowed fat.
I'm on a specific diet given to me by my fibro specialist.

(on the fibro front, it's been a bad week, but not as bad as Sept-Nov)

Today's food:
morning: 1/4 apple (left over from making K's aruchat eser)
snack: 1/2 cup grape drink
lunch: 3% cottage cheese, 9% sour cream, 2 tsp sugar
1/4 cup couscous, 1/4 cup canned peas (which Rachel claims aren't edible)
snack: ~1/2 chocolate bar, maybe a bit less, b/c I kept giving my kids pieces.
supper: 1 can tuna w/ cmoyonaisse, 1 green apple.
still hungry.

ok. had another 100 grams of pastrama plus some ketchup.

The Treatment Plan

It's hard to know where to begin.
I saw the new doctor a few weeks ago. I drove up to Kfar Saba to see him - Yaakov joined as navigator and, you know, husband.
He said I need to make the following changes:
1. No salicylates - specifically, nothing applied to the skin that has salicylates - this affects everything from body soap to deodorant to which creams I can apply to my kids.
2. A very low-carb diet. For the first month, I'm supposed to teach my body to live without sugar as its energy source. Apparently, it's a big problem both for thyroid sufferers and for fibromyalgia sufferers.
3. Adding both Vitamin D and Iron to my list of daily supplements.
4. Taking Hydrocortisone for the next month to help with 'adrenal fatigue.'
5. Adding Guafenesin twice a day.

I've been on the Guafenesin for two days now, and I'm not feeling a big difference, but that's ok.

The thing to note now is where I'm having trouble:

• I'm experiencing pain everywhere. Even typing and mousing hurts after a minute or two. 
• I'm tired during the day, and jumpy at night. I have insomnia, but I can't seem to do anything with the energy I have at night. If left alone, I'll sleep very well from about 6am to 3pm. The rest of the time, it's hard for me to sleep at all.
• It's hard for me to concentrate. 
• Restless legs - it's hard for me to sit still and not move my legs - this also seems to be different at different times of the day.
• Sudden chills/sweats. It seems to happen mostly when I've been standing for a while - it's better when I'm sitting, lying down, or even walking, but if I'm just standing, I'll often break into a sweat and feel lightheaded. It feels completely awful. I can feel the blood draining from my face, and sometimes I wish I'd just pass out so that maybe someone would notice that I'm having a problem. 

There's a lot more to tell, but my typing ability is limited, as is my time...

Shabbat Shalom to all

LGG

Just Like Starting Over

It's weird to start writing in my blog again right now - when things are so crazy - and not to write about it. The thing is, I don't think I have anything to contribute right now. Rockets are falling on Israel, the military is preparing to wage a ground war. People I care about are in danger. Some of my friends have left their homes for safer places. I haven't heard a siren yet. I haven't heard the rockets exploding (though apparently, people who live quite nearby have heard them.) I'm feeling very protective of my kids, my family, my friends, my nation. But I really don't feel that I have any great wisdom to add to the mix.

In all honesty, what is really occupying my time these days is my sickness. For those tuning in for the first time today, here's the story:
I'm 34, married +2. My daughter is 5, and my son is 3.5.
I was diagnosed with thyroid problems when I was 19, and with fibromyalgia when I was 23.
I've been in near-constant pain for over ten years, with my symptoms increasing radically after each pregnancy, though we were able to resolve a lot of the issues after the first pregnancy, after the second, I never really recovered. Since then, my situation has been getting steadily worse.

I'm tired, in a lot of pain, and very overweight.
I can barely work. Typing often hurts. I can't keep up with the housework, even though we have a cleaner once a week. I have difficulty being a good mother. I have difficulty living my life. I've been getting steadily worse for years. I want to have more kids, but that's out of the question while my health is so problematic.

A few weeks ago, I began a desperate search for a new doctor, and now I've found someone who I think might just be able to really help me.

Welcome - this is an invitation to join me on my journey to getting my life back.

Last Thursday, I went for my first intake meeting with the new doctor, and today, I went for a series of blood tests. I hope to have more - and good - news soon.