Wednesday, July 29, 2009

Precocious Ponderings......

Toph has a new favorite activity. It's called "pull an obscure question from out of the air and see if Mom knows the answer." It's MUCH more difficult than "where does the rain come from." Because I know THAT answer!

Yeah, so totally NOT a recent photo!

Not my boy, no way! He's a thinker. He likes to ask questions like:
  • How do we hear?
  • What happens when we die?
  • What's the history of Halloween?
  • How does gas make a car go?
He really likes to be totally random and come up with these quizzes at odd times--like when we're going places in the car. And, lucky for me, he's satisfied with answers like:
  • I don't know, but (insert name here) knows. Let's ask him/her.
  • I don't know, but we can look it up on the internet on Wickipedia.
  • I don't know but we can ask Dad. He knows EVERYTHING (ha!)
And Toph REALLY likes to look things up on "Wick-Low-Pedia."

Sing Along

My children are seriously into the PS3 game, Little Big Planet (LBP).

I'm too old to get the point of this game. I think it's weird. But they LOVE it! They play different levels, decorate their sackboy characters, and create their own levels. This can go on for indefinite hours of time, if allowed. They lose all sense of time and don't even realize if they've missed a meal. Like kiddie crack, if you ask me.

This is a sackboy character.

Toph and Hannah are creating their own level--"Total Glitch Museum." They cooperate with each other and add fun things to their level. And they have spent hours doing it. They get to add music too, and Hannah LOVES a song that's in Spanish. It's featured in the YouTube Video link--about 6 min, but you don't have to watch the whole thing. The video shows the actual playing of a level and features Hannah's new favorite song.

Picture of a game level--not their game though.

Both kids sing along when it's on the TV. No, we don't know Spanish. I have no idea what the lyrics are or even what the kids actually are saying. It's just fun to watch and listen to. Come on over and join the sing-along!

Tuesday, July 28, 2009

My New Life

No, I didn't trade in the old life. But I definitely have a new life. This is going to take some time, since I am a thorough person.....

It started in October or November last year when my sister, Aimee, called to tell me something. She'd been to LA to see a specialist (Please, NOT cancer--we have a bad track record with that!). Aimee has fibromyalgia. My Mom does too. It's genetic. She thought I should read this book she has. I'd always thought of fibromyalgia as the women's equivalent of ADHD--something the doctors would tell you when you needed a diagnosis and they didn't know what was wrong with you. After all, my Mom had never had any testing for fibromyalgia. ....Because there ISN'T a test FOR fibromyalgia. You take a lot of tests to rule OUT other things. I had another friend who'd been diagnosed a few months before Aimee, and I'd considered that I might have it too, but I was comfortable occupying my little corner of the planet Denial.

Once Aimee told me that it was genetic, I couldn't occupy Denial any longer. I had to get out my Mom MD and do some research, and I diagnosed myself. When I went to my doctor for my physical about 2 weeks later, I told her what I suspected. She wasn't so sure. She did LOTS of tests for other things--hormones, lupus, and other stuff. All of that was as expected. When she did the "poke test" I hurt in 11 of the 18 places, but I wasn't jumping off the table in pain, so she was reluctant to make a diagnosis. She did prescribe a "happy pill" though to help me with depression, anxiety, apathy, and pain. Hey, it does help me sleep a little better at night and I didn't freak out during our move, so it's helping something.

What is this hideous disease? I am still learning how to describe it. There's something wrong with my kidneys that doesn't allow the phosphates in my body to be excreted normally. So these phosphates build up all over my body in these painful lumps and bumps. Calcium, which we need for the production of ATP--for energy--must bind with phosphates first, so that leaves me tired all the time. Fibromyalgia is a disease with a LONG list of complaints that are seemingly unrelated, and not all doctors believe it's a real condition. It's cyclical in nature, and you don't experience all of the symptoms at the same time--when 1 problem goes away, it gets replaced by a new complaint. And eventually you feel like a freak, because there's always something wrong. Here are some of the possible complaints: FATIGUE, pain all over the body--different places at different times, numbness/tingling in extremities, depression/apathy/anxiety, skin problems, bladder problems, IBS symptoms, memory and concentration problems, headaches, weird tastes in the mouth, and the list DOES go on.......

But the GOOD news is that there is HOPE! Aimee found an endocrinologist in Marina Del Rey who specializes in fibromyalgia, and he has discovered a very SIMPLE treatment--guaifenesin. Yes, that's the main ingredient in Mucinex and many cough medicines. It's fairly inexpensive, and basically has no side effects. However, in order for the guai to work (and not be "blocked"), you have to change your lifestyle a bit. No more salicates. No more plant oils, extracts, or barks. No more aloe. No more mint. Most of the things that you have to eliminate are the things that come into contact with your skin--so you re-vamp your supply of hair products, deoderant, lotion, lip stuff, make-up and skin care, razors and shaving stuff, toothpaste, and topical medications. You learn to read labels and look for the salicates. It's really not that hard. And then you start taking the medication until you feel worse. Yes, you get worse before you get better.

I figure I've had fibro since I was a kid. I had skin problems, growing pains, and headaches all the time. Then it took a break until I was a senior in high school. Then I got mono, and life has never been the same. The good times were shorter and the bad times were more numerous, and that cycle has repeated itself for more than 20 years. And the guai reverses stuff about 6 times faster than you experienced it. So you hurt more and are MORE tired than before. And eventually my good days will increase until there are more of them than the bad ones. In time I will be in a "remission" of sorts. So there IS light at the end of the tunnel! There's a GREAT website that explains all of this much better than I have--it's totally worth the research time. There's also a GREAT book that my sister loaned me:

I'm in the "fun" part of the cycle. I'm still learning how to live my new life and what I need to avoid. I'm LOVING the fatigue and pain and insomnia and....... Ok, not really, but I keep reminding myself that it will be better. And I LOVE my new doctor. Dr. St. Amand knows what he's doing--because he's living with the disease too. Not only is his specialty endocrinology, but he's living proof that life can return to "normal" again. At the first visit, he takes a medical history and then "maps" all of your lumps and bumps. At follow-up appointments, he does another body map and then compares them. If the meds are working, your lumps and bumps will get smaller, break up, get softer, and disappear. I'm looking forward to this next appointment, because I want to see some improvement.

I have given myself permission to not do as much right now. I try to rest when my body demands it (all too often). I am not going to volunteer to be a room mom this year at school. I'll work in Toph's room, because I need to see him in action, but I'm not going to volunteer as much as I did last year. I'm going to focus on getting healthy. And by next year, I'm going to feel lots better. Until that happens, I'm going to repeat my motto often: My resurrected body is going to totally ROCK! It's NEVER dull around here!

Cub Scout Campers

Last week, Topher, Hannah, and I were cub scout day campers. Toph was there because, duh, he's a cub scout. I was there as a leader volunteer. For the last 2 years I haven't gone, but with a boy in cubs now, I felt like it was my turn to volunteer. For the whole week--what was I smoking? Hannah was there because where would I leave her for 7+ hours 5 days in a row? She attended Sibling Camp at the same time.

I was a Jack-Of-All-Trades last week. I did the skit and song rotation on Monday, Wednesday, and Friday. During that time I got to teach the history of the flag and other flag-related topics, the history of the national anthem, and the music belt loop. Everything I needed came in a binder, so it wasn't too bad, and I acutally learned things too. On Tuesday, I filled in at Agent's Life. The theme of camp was "Mission Possible" and throughout the week, the kids were doing some activities that would make them like FBI agents. Tuesday's activity was on prints--animal prints specifically, but we talked about all kinds of prints. We learned about the 3 different types of footprints, and then the boys used plaster of paris to make a footprint. Ideally, I was supposed to wet some dirt around my area and put the prints into the dirt. Then the boys would mix their plaster and pour it into the dirt. That wasn't drying fast enough though, and I didn't have a lot of dirt at my disposal, so I mixed it up a bit. Instead of pouring the plaster into the dirt, we put the print into the plaster. Not exactly the same, but they got to go home with a footprint. Thursday I helped at Crafts. The boys didn't have time to finish all of the projects on Wednesday, so there was a lot to do on Thursday. I helped the boys make a leather bracelet--by stamping on the designs. I'd done that a LONG time ago as a kid, so I kind of knew what I was doing. It was LOUD, but a lot of fun.

Topher did all kinds of things. He did archery and fishing (probably his favorite things), crafts, outdoor cooking, skit and song, hiking and nature, fingerprinting, and water games. On Friday, the FBI was supposed to run one of the centers, but they got called away to investigate a boarder patrol agent's murder, and the leaders "kind of" set up the area like the FBI would have. The boys got to make predictions about a "crime" based on evidence--bones, blood, etc. He had a blast!

Hannah enjoyed Sibling Camp. The kids did tons of crafts. She made lots of bracelets and necklaces and pictures. She painted a treasure chest. She got to go to the playground. She got to feed the ducks. She got to play games and sing and dance. She loved it!

Cub scout day camp is at Lake Poway, about 20 minutes from home. Not a bad drive, and it's really pretty. But it was HOT! We don't get much HOT weather, but we were in the middle of a heat wave, and it was 98 one of the days before we started. Remember, I live in San Diego--it's not normally HOT. But I was glad to be outside, at least at the beginning of the week, because our a/c was BROKEN!!! It broke on Wednesday or Thursday of the previous week, and didn't get fixed until Tuesday of scout camp week. Talk about HOT! Inside our house it was 91 one day. CRAZY!

I do have to say that the timing of a heat wave, all-day scout camp volunteering, and being in the 2nd week of fibromyalgia treatment was really less than ideal. The heat sucks the life out of me, the meds sucked the rest of the life right out of me, and I was hurting all over my body--like the worst case of flu you can imagine. There were a few times I wondered how I'd get through it, but I was blessed. Thursday was an especially blessed day. I was SO tired and hurt SO much, and I was having asthma issues on top of it, and if they had enough volunteers, I was going to go home and rest. Hannah was missing her down time and playing with her toys, and I just wanted to crawl into bed. But that was not to happen. And Thursday ended up being a great day. I exercised a little faith that my Heavenly Father would have to help me get through the day, and He did not disappoint! And I must give kudos to our camp directors. From the beginning, they knew they were getting additional concerns with me. They knew about my physical limitations, and they kindly put me places where I could be in the shade and periodically rest. They were concerned for my well-being every day. And paid me a very high compliment at the end. The program director, Troy, told me how grateful he was for my daily attendance and willingness to do whatever they asked of me. That was so nice to hear.

It was an exhausting week. I gave camp my entire focus of energy--which means that I was pretty much a lump at home. We'd get home sweaty and stinky each evening, throw the kids in the shower, eat a 2nd dinner, wash the uniforms, and go to bed. Wake up, rinse, and repeat. Camp was from 1-7 (from 12-7 for the leaders), so we ate brunch at about 11, "linner" at 5, and a 2nd dinner at about 8 all week. The kids had a blast though, and I enjoyed myself too. I am allergic to something at Lake Poway though. Every night I'd come home and itch my eyes and ears and sneeze, and by the end of the week, I was having asthma issues too. Toph experienced this too, to some extent. And the BUGS! Don't get me started! There were these black and yellow bugs that kept crawling all over my stuff and ME! Really, this is the extent of the camping experience for me--nothing more than day camp for this city girl!

Next year we'll definitely do it again--but I will probably only do 2-3 days! And maybe I'll remember to take the camera!

Sunday, July 19, 2009

Some Like it HOT--NOT Us!

So, our a/c broke on Wednesday or Thursday. I called the property management dorks, and a work order got submitted on Friday--but you know how that goes. "We're booked solid. We can't get to you until Wednesday at the earliest." No amount of pleading or using asthmatics as an excuse seemed to do anything.

NORMALLY, this would not be much of a problem, but we're in the middle of a heat wave--with humidity! Not Florida-type humidity, but it's much hotter than normal for us.

Friday (Robert) was at scout camp still, we waited until the house was 89 and then we went and got haircuts and went out to dinner. By the time we returned, it was bearable in the house. Yesterday we went to friends' house in the afternoon and didn't get back until almost midnight, so again, it was bearable. Today is Sunday. So we don't go to the store or the beach or anything, and I really wasn't feeling great anyway. We all have had fans trained on us, so we've been comfortable enough--as long as we don't move. Our bedroom got up to 92 and the thermostat in the downstairs read 89. HOT!

I'm calling the a/c people at 8 tomorrow morning, hoping that some other person got desperate and paid major bucks to get their a/c fixed during the weekend and cancels--then we can get their spot for tomorrow. Aside from that, Toph, Hannah, and I have cub scout camp from 12-7 all week, so we won't be home during the hottest part of the day.

In an effort to maintain some gratitude over our situation, I keep reminding myself to be glad we live at a time when it's ok for women to wear shorts. I'm glad I live in a place that doesn't get as hot as Fresno. I'm glad I live where there's electricity, so we can at least run the fans. I'm glad we have friends who loaned us their hurricane fans. I found out that I have a friend on vacation who has offered to let us use her a/c while they're gone--and we'll take her up on that tomorrow if it's still this hot.

Right now, a cold shower sounds GREAT!

Friday, July 10, 2009

Watch it! He IS listening!

So, I know I promised a post with photos, but this isn't it. Sorry. Still coming. I promise. It's just that this was on my mind tonight, and I wanted to get it out of my mind.....

So, Heavenly Father IS listening to what we think and say--I have proof. The following examples are things I have either thought or said:

Me: Yeah, having asthma IS a bummer, but at least I don't have diabetes. I may not be able to breathe, but I can eat all the chocolate I want.
His answer: gestational diabetes SO bad that I got to take insulin.

Me: "I don't care if we have a baby on Christmas day! I can't take this (infertility treatment) much longer."
His answer: that's the month I got pregnant and I was due on Christmas day! If I'd know it would be THAT easy, I'd have said it LOTS earlier and inserted a different due date. :-)

Me: ADD is the diagnosis parents get when they have a really obnoxious child and there's no medical reason--Hello, try discipline! OR, ADD kids wear me out! Just dealing with (ADD kid) for 50 minutes in class is enough to make me want to slit my wrist (ok, not really!). I couldn't live with one.
His answer: Toph has ADD. He's not the hyper kind, but he can't focus long enough to get dressed without help. Or brush his teeth. Or wear shoes. Or do homework. Or....... BUT he CAN focus for hours at a time on video games or Legos or K'nex (I didn't know that ADD kids could focus on anything). This summer we're learning how to parent an ADD kid and help him feel like he's not weird.

Me: Fibromyalgia is the diagnosis women are given when the doctor doesn't know what's wrong with you. Then they pump you full of anti-depressants and sleeping pills and maybe pain pills--whatever it takes to get you to leave them alone.
His answer: It's a real disease. It sucks. Anti-depressants, sleeping pills, and pain pills don't really fix it. I have thought about speed though--anything to provide energy when I'm completely drained....JUST thought about it. Not going to do it.

This proof just goes to show you that He IS listening. Watch what you think and say! Those thoughts and words might just come back to bite you in the butt!

Do YOU have any proof? I'd love to hear your stories! Leave me a comment!

New Clothing SAGA

While this post will not contain photos, I hope it will be somewhat amusing.

The children have been growing again--darn it! They are so disobedient. I keep telling them to stop growing, and they just laugh. Hannah's pj top has elastic on the sleeves and it was hurting her arm. Toph was getting a melvin because his pj bottoms were so small. Hannah was showing the world her bum with the Daisy Dukes she was wearing. I looked at the sizes of all of these clothes--sizes we were barely fitting into last year.

So it was time to go shopping. It was fairly easy to find shorts that weren't Daisy Dukes for Hannah, but finding pajamas for the kids was almost impossible! We like PJ pants with T-shirts. For several reasons--they can be worn year-round. No PJ pants for Hannah in any of the stores I tried. PJ's in the stores were skimpy. Why bother? Found ONE pair of pants for Toph, and we found silky shirts and shorts (not intended as PJ's but it works). Still nothing for Hannah. I ended up going into the women's section and finding nightgowns in size XS. We also found PJ capri's (pants for my 6-year-old) with strings to make them tighter. Hannah got several new things she loves and Toph LOVES the silky shirts/shorts he's wearing as PJ's.

Shoes will be the next thing on the agenda, but I've learned my lesson. We'll wait until just before school starts. At the rate these kids grow, they'd need a bigger size if we bought the shoes now!

Monday, July 6, 2009

On VACATION.......Summer Vacation!

I looked at the date to my last post and realized that it has been WAY too long!

The end of the school year and vacation the next week were just SO busy that I didn't make time to post. Having discovered Facebook, I DID make time to go there. I need to remember that my blog is my priority though.

Why do I blog? First, because it helps all of the family (and friends) know what we're up to. Since we don't live near any of our family anymore, it helps all of them know what's up with us, and allows them to see pictures of us. Secondly, I've NEVER been good at journaling before, but I discovered that I really like to blog. I can use the blog as a family journal, and I can even make my blog into a book.

So, I've been on vacation. Summer vacation has been full and busy, just like the rest of our lives, but I will make time in the near future to rectify my lack of posting. I'll even post pictures. Robert got me a card reader for my computer, and he's taught me some "magic" to get the pictures from the camera onto my computer. Life is good.

Now I need to go ponder the ramifications of doing something permanent to fighting children who MUST win all arguments. I'm thinking of installing a velcro wall at each end of my upstairs hall. Or muzzles.

See you soon!