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.

Am I a Liar?

There's a question that's really been plaguing me lately I don't know quite how to define it. I'm in a fibro flare. I'm in intense amounts of pain pretty much constantly, and exertion aggravates it some, though I'm not really sure how much. Ibuprofen helps a little, but even with the highest safe dose, I'm in a considerable amount of pain.

Here's where the problem comes in – Say Ephraim falls asleep on the couch. I can pick him up and take him to his bed. It hurts, but once I put him down, I don't think I'm in any more pain than I was before. Say I'm at my desk working or watching a video or something, getting up is painful, but again, once I reseat myself, I'm not really in any worse pain than I was before. So is it fair for me to ask my husband to handle these things when I *can* do them?

I tend to say 'I can't' when I mean 'it will hurt me.' That's a lie. I can. But it's so hard for me to force myself to do painful things. And it's so hard for me to explain how much pain I'm in or how much things hurt me without seeming like a whiner.

I don’t want to be a whiner. I don't want to be considered lazy. And I don't want to be in pain.

First Post of 2012

I've been so busy writing for other people that my blog has lain desolate... "bloggi sheli lo notarti..."
Anyway, I know you've all been wondering what happened with my diet.

This is kind of sad. No, actually, it's very sad.

I lost 8 kilograms, and then I got stressed, loosened up a bit, and it ALL CAME BACK. ALL of it!
I weigh what I did when I went to Ephraim's birthday party 15 months ago, and looked at those pictures with shock and horror.

I will say that I *think* that I managed to gain some muscle in there, because my clothes still fit better than they did then, and my face doesn't look as puffy (at least to me). So let's say it's like I only gained back 6 of the 8 kilos. It's still awful, miserable. All that progress gone.

So now, I'm on a new plan. I bought this device called a Fitbit, and it monitors how many steps I take, how many flights of stairs I climb, and how much I sleep. On its online dashboard, there's a place to enter all my food and it tracks how many calories I'm allowed. Of course, this all happens right before Pesach... so it's going to be a little touch-and-go for those 8-10 days, but I'm going to try to do my best.

I have so many post ideas percolating in my head, but no time to write. I'm going to try to get back to actually blogging for myself, though. I need it.

Braving the Supermarket

Today, after gan, I decided to ask the kids what we were going to eat for supper. This was mostly because I had no idea what to make. They came up with the idea of making spaghetti for supper, which made me realize that I didn't have sauce (we usually use the jarred kind). I decided to take the kids to the supermarket. I've never done this before. I've never taken them without a stroller. I've always had at least one of them restrained.

I was fairly terrified.

My list was very limited. Tomato sauce, tivol "ground", cheese, cinnamon gum if they had it (they didn't). That's it. We walked to the supermarket pretty much without mishap. Ephraim stuck with us and didn't run away. The kids obviously asked for cookies. And here's where the fates aligned. Two things happened. One, I happened to have both cake and cookies at home (provided by Kelli), and two, my kids happened to be angels. So I said "we have cookies at home" and Kinneret said "but I want cake" and I said "we have cake at home. Kelli brought us a cake." and wonders will never cease, she stopped asking. It even worked with cereal. She wanted the cookie cereal and I said "we buy corn flakes, and we have that at home," and she didn't ask again.

The kids asked for chocolate milk and I said "another day. not today" and they accepted that... Kinneret wanted to hold the sauce, but she accepted holding the cheese instead. Ephraim wanted to hold the cheese but he accepted holding the butter instead (how did that get on the list?) It was like miracle after miracle. Which is why, when I handed Kinneret her tivol ground to hold and Ephraim asked for one to hold too, I decided I wasn't going to press my luck, and we now have an extra package in the freezer. It won't go to waste.

The line was short and the kids didn't get crazy fidgety in line. The kids carried their share of the groceries part way home. They even almost sort of walked home decently. Times like this, I think maybe parenting isn't only for the absolute strongest and bravest. I think maybe it's something I'm actually capable of doing.

For the first time since the toddler phase started, I'm starting to feel like going out with my kids doesn't leave me feeling harried and worn out. I think I actually enjoyed going out to the supermarket with my kids. I might have even laughed a little. 

A Finland State of Mind

This time last year, I was dealing with Ephraim's fourth surgery and preparing for our family trip to Finland. I've mostly repressed the whole surgery thing. I've been thinking about the trip a lot. I didn't really write about it much. I meant to. It was a mixed bag as trips go. Some of it was absolutely fantastic. But some of it wasn't.
For example, eating blueberries and lox and crusty fresh bread was great. Taking a boat to the island zoo was great. Having Kinneret stung by a bee for the first time on Shabbat in a campground in Helsinki - less good. Managing to pull the stinger out and giving her Children's Advil and having her calm down pretty quickly and her breathing remain even for the next several hours - better.
The worst moment was in Russia. (Remember, we flew into St. Petersburg, spent an overnight there, took the train to Joensuu, spent a week there, took the train to Helsinki, spent a week there, took the train back to St. Petersburg, spent three days there, and took a flight back to Israel) We had two strollers. We'd loaded our luggage on one, and Kinneret in the other. Ephraim was on my back. We walked several blocks looking for a taxi, going over several large curbs. One of the wheels popped off of the stroller that the luggage was on, and everything spilled into the street. We hailed a taxi and told him to take us to the hotel. He took us to what was clearly the wrong address, dumped our stuff out on the sidewalk, demanded his money, and pulled away. I cried.
People came out of the apartment building we'd been dumped in front of and asked what help we needed. One lady spoke some English. She helped us call the hotel we were supposed to be staying at, and the hotel sent a taxi to pick us up. The taxi came and took us all the way to the hotel. We managed the rest of the trip with the backpack carrier and the stroller.
We never did get that stroller fixed, though we did bring it back to Israel.

Anyway, I've been thinking about the trip a lot, thinking about blueberries and thinking about swimming in icy water and living in a little cabin. I miss Finland. I miss three weeks of undivided family time. I even miss cooking in a tiny little travel cooker and eating sandwiches for most of my meals. I miss the adventure. I can't wait for our next family adventure. I know it won't be next year in Lublin (EJC 2012), but maybe the year after... In the meantime, I'll be in a Finland state of mind.

Mind the Jap

Today I woke up and had coffee and went to my Tai Chi class.
Then I stopped at the fruit stand for fruit and the mall for a yogurt drink.
Then I played on Twitter and blogs and Facebook for a few hours (ok, so that was actually working)
Then the maid came and cleaned the house.
I picked up my kids and took them out for chocolate milk.
Then my husband came home and took us out to dinner.
On the way home, we stopped and bought me two new hats.

I feel like such a JAP :)

Food
Breakfast: Coffee + yogurt drink
snack: coffee
lunch: lentil soup, peach
snack: fireball, coffee,
dinner: hummus with meat, 2 pitas, salad, apple-water drink.
after: fireball

Doggy Potassium

So Poofy's kidneys are functioning well. His potassium is high. For now, I was told to try to keep him from eating anything that's not his dog food. There's the possibility of putting him on low potassium food. We'll see.

Today was a medium day. Overall, I think it was decent. The coffee is starting to get out of control...

Breakfast: 2 cups coffee,
Snack: fireball
Lunch: coffee, 1 slim-fast shake (vanilla)
snack: coffee,
snack: celery, 1 cracker
dinner: 1 chicken neck, 3 bowls lentil soup with lentils, celery, carrots, onions, and soup nuts (about 1/4 cup total of soup nuts)
snack: 1 apple

Passed Test, Blood Test, Diet

So today's big news is that I took my written (theory) driving test and passed it. It took two tries, but I have the official pass on that, which means I just have lessons and a road test and then I can get my license. This would be a big move toward my feeling like an adult, so it's good to feel like the process is moving along.

I took Poofy to the vet today, and he got a shot of tranquilizer so he could have a blood test. I'm expecting to find out that he has chronic renal failure... which is both good news and bad news. Animals can live for years with it - that's the good news. The bad news is that his peeing on the floor is likely to get worse rather than better. I'm currently taking him out 5-6 times a day and he's still having accidents. It's not a nice situation.

On the diet front, today was a decent day. Here's the food:
breakfast - 2 coffees and a slim-fast (chocolate)
snack - coffee & peach
snack - fireball
dinner - 2 chicken breasts & 1.5 cups of rice
snack - neviot + raspberry vanilla flavored water.