State of Health

I think I have mentioned before that Dr. Jay has a chronic condition known as Crohn’s disease. Basically, his colon has open wounds that don’t heal and he is often in terrible pain. This is a strange disease in that it is misunderstood ("just relax" is told to him alot) and there are not always a set course of action to take when one gets ill.

He was in remission for about 7 years. He’s been in the recent flareup since Soleil was born. We track it to lack of sleep. His doctor wants him to start a new medicine, a class called immunosuppressant agents. These drugs basically block the immune system. Lovely. They take time to build up, so he would need to be on it for 3 months before stopping his current drugs. Lovely, 10% of people can not tolerate these drugs. Lovely.

Last night, I found this little gem on immunosuppressant agents:

Side
effects can include allergic-type reactions, bone marrow toxicity, infections,
inflammation of the pancreas, inflammation of the liver (rare), and lymphoma
(very rare). Suppression of the bone marrow can lead to abnormally low levels of
the various types of blood cells that the marrow produces. Therefore, regular
monitoring of blood counts is recommended during treatment.

Now isn’t that a lovely thought. Here, take a medicine that will help your constant pain, but could prevent your white blood cell from being formed so you need a blood test every 2-4 weeks! I think he would also need scans to check his pancreas and liver on a regular basis. I am not thrilled about this drug. His doctor offered him the suggestion of a second opinion on treatment. He isn’t sure what to do. He is waiting at least a month to decide.

Meanwhile, he is getting more and more depressed over how this is affecting his life. I wish I could help more.
I hid the screen from him last night when researching this drug for him. The screen that said "75% of people with Crohn’s undergo surgery at some point". He doesn’t need to think about that. He really doesn’t…

Sorry if this post is a downer. I just need to get some of this out of my system and onto paper (?). I can’t really talk to him about it.

Life, with a few less lemons

Sorry, guys. Karen’s news threw me into one of those funks where I wish I could solve everyone’s problems and I felt stupid for actually being upset about something here…

Back to me (because, it IS all about me, isn’t it?) Luna had her 18 month appointment yesterday. The good news first: She is 24 lbs, 33 inches and healthy!  Bad news? I had the NP from hell. I hate working with this NP. I usually ask to not have her because she was so bad with Soleil’s 18 month appointment.

Soleil is usually with us at appointments and Dr. D, our ped, usually will do everything to Soleil first just to show Luna it is ok. Luna was hospitalized when she was 8 months old and this led to a serious fear of doctors. This NP refused to play along with Soleil. This made Soleil very sad. Then when it was time to check out Luna’s hips and diaper region, NP says "Does Luna need a new diaper? Let’s check" Dr Jay said, "no, she shouldn’t" and the NP hushed him saying that she doesn’t really mean that… Ok. Beef number 1. Tell the kids the truth. Dr. D ALWAYS says "I am going to look in your diaper now to make sure everything is healthy." How hard is that? Why can’t you just say that to a kid? Luna is not stupid. She understands a heck of alot and she just can’t express it all. Don’t treat her like an idiot! I think this is one thing that burns me the most, when people treat kids as if they don’t get things.
Then Beef number 2 came. NP set Luna on the scale. Luna saw the cool sliding weight and grabbed for it, moving it closer to her, closer to zero. The NP said "Oh, she is such a girl, moving the scale to her favor". Dr. Jay had to hold me back. I was snarling and had a growl in my throat. WTF? My daughter is 19 months old. She doesn’t give a damn about her weight. She shouldn’t give a damn if she is healthy. Why on earth would you say that to an 19 month old? What is wrong with you that you would start to reinforce those stupid ideas of physical image at such an early age????

I might call the office and ask who I could speak to or maybe even speak to her about these comments. I really was put off by them. Oh, and she kept us waiting almost 20 minutes even though we were her first appointment and we were the only people in the waiting room.

Sigh….

Help! Cooks please help me!

I need help. I’ve emailed a few friends and I want some advice. I am not a good cook. However, I am slowly learning. We have a longer commute home since we switched daycares. We need to eat rice with dinner when Dr. Jay has a flare up, so we plan our meals around that. However, cooking rice is a royal time sink. So I am considering a rice cooker. I have NEVER had one and the only ones I have seen I have bad memories of. I was a resident assitant and three of the suites on my floor had rice cookers. We also had roaches. You can see where this is going. Everytime we had a safety inspection, I would see little baby roaches around the rice cookers. YUCK!

So, I am fighting that stigma of rice cookers. I want one that I can program so the rice doesn’t cook the moment I leave the house. I want one that can do brown rice because we eat that more than white rice. I am looking at this one. What do you think? Any advice? Suggestions???

Thanks folks!

Here’s a photo of it.Rice

Warm and Nutty

Dr. Jay bought me some coffee pods yesterday and on the label they were proclaimed "Warm and nutty". While this post has NOTHING to do with coffee, I just thought it would make a great post title.

I was at the lab office today waiting to get a blood draw. I am hypothyroid and I feel things are off again. The only way to know is a full thyroid work up. Lovely. Dr Jay was getting his meds, so I waited. The only magazine? A pregnancy magazine. As I was flipping through, I found an "article", more like junk, on "how to get pregnant". As a former infertile, I read this carefully. Some of the advice was assinine to be kind:

  1. Stop your birth control
  2. Stop drinking coffee (yeah, as if your one -two cups a day really matters)
  3. Enjoy sex, people who enjoy sex get pregnant (BULLSHIT, my RE pointed out when we did IUIs that there is no connection between female orgasm and pregnancy)
  4. Most specialists won’t see you for one year, so follow our suggestions (Fuck that, my MIL’s advice when we were 8 months in was "lie, they don’t know how long you’ve been trying. What if it is something your OB can find out quickly?")
  5. Relax. (Again BULLSHIT! I started telling people that we tried relaxing, now stressing was what we were trying)

I know, I shouldn’t get so angry over this, but I do. There are women out there who are going through infertility and they read dreck like this and feel like they are failures. They worry if the cup of coffee they drank at Starbuck’s last week is going to screw up this month. They worry that they are stressed from timing sex and that they aren’t enjoying enough and that they can’t get pregnant if they are not enjoying it. They worry that they are worrying too much about coffee and sex to get pregnant.

We need less of this bullshit and more understanding of people struggling with infertility.

Happy Half-Birthday baby!

Today is Soleil’s 3 1/2 birthday. She asked for pancakes so we made some! Yummy!
Now the girls are playing while I figure out what we are doing today. THEY* claimed we would get 3-5 inches of snow. There is already 3 on the ground and the snow will end at 7pm. I’ll get some photos later!

* They are the meteorologists who no longer rely on simple physics, but complicated models that cannot really handle real life physics because they only simulate 2D physics, not 3D or 4D(the fourth dimension is time)


Now for some photos. Dr. Jay left for work at 9, he called at 9:30, he had made it about 2 miles from the house. He called at 10:15 saying he was almost back to the house.

The storm ended around 12:30. Thank goodness. The first photo is our deck at 9:30 AM. The snow started at 6:30am. The second is from 11:30AM
Mon_930Mon_1145

Why English is funny!

Timon: "I think he’s a little blue"
Pumbaa: "He looks more tannish brown to me"
Timon: "No, I mean he looks depressed!"

-The Lion King, when the meerkat and the warthog meet Simba the lion cub

Soleil loves the Lion King (except scene 10, which we MUST skip over every F’ing time). The other day, we were driving home. I was tired, Dr. Jay was tired. The girls were begging for crackers because we all know kids NEVER eat and they will simply wither away to nothing if they don’t eat in the car and continue to contaminate my backseat so my car will have no resale value when I go to sell it later this year. Then Soleil goes to prove that the English language is beyond my comprehension.

"Mommy, did you have fun at work?"
"Sort of, I mostly had meetings and I was writing software to help me solve a problem"
"Oh, mommy, that sounds like you had fun"
(You don’t know the half of it honey) I think
"Mommy?"
"Yes Sylv?"
"Did you know Noggin has a depressed show?"
"What?"
"On Noggin. One of the shows is depressed."
(utter confusion from me, Dr. Jay is laughing)
"Soleil, I don’t understand. What do you mean?"
"On Noggin Mommy! The show Blue’s Clues. It’s depressed! Blue means depressed!" (in a tone indicative of her parent’s stupidity)
"Oh, I see" and then I bent over the steering wheel laughing….

 

Getting some exercise

Now that PT is over, I am getting some exercise in. This is good. I have privileges to work out with the "Harvard" elite students and watch them play squash.

The thing I have been not able to blog about is the PT. Last Tuesday, they released me. In 2-6 months, my foot should be fine.  Why is this bothering me? Why would this be difficult to write? Because I was also told that IF I can run again, I need to keep it to once a week, not more than 3 miles TOTAL in a week.

Wow, that was hard to hear. In 1998, I took up running for exercise and weight loss. Every step was hard and I told myself "It’s for my future children". And I continued. I got up to 3 times a week 3 miles a time. I was considering running a 5K just to do it. I felt good. Then the launch got near and things got crazy and we spent more than one crazy night working until 8 to keep to software for the spacecraft running. And I stopped.

I started again in late 2000. It was a crappy year, I was not getting pregnant, but I kept at it. And I got back up to my 3 times, 3 miles. It felt good, I was able to actually run. When I finally did get pregnant, I had to stop running as I had something called OHSS. Not fun. Then as that went away, I developed a hernia that landed me in the L&D at 22 weeks with everyone in a panic…It was OK, I was OK, just in pain… I didn’t start running again until Soleil was 7 months old. Just after her 9 month old birthday, I ripped my calf muscle. 2nd degree tear. Not pretty.

PT, hard work, crutches, I got myself running again after Luna was born. Then my foot started having trouble.
Well, this long story comes down to this, the tear in my calf muscle never healed properly. I have scar tissue on the muscle. I am working on extra stretching to break it and help the muscle heal again, but the PT told me that I will never be able to run again the way I had been. I was shocked. I mean, come on, 9 miles a week is NOTHING. But the level of damage is too much. I am really disheartened by this.

I have been cleared to do a run/walk on a treadmill. Walk for 4 minutes, run for 1 and slowly build up to a 20 minute run. Only once a week. Not more. She advised against running outdoors, my favorite, because the uneven ground could lead to another calf injury.

So I’ve been biking at the Radcliffe Center, but it just isn’t the same. I wish I could run again….

Regurgitate

Why are there no references to the word "regurgitate" in parenting books? As in "when your child is 3, they will experiment with food and regurgitate their milk into their yogurt container so to make yogurt from milk".
Why? Why don’t parenting books prepare us for this?

Any why do they neglect the cure all for constipation. CL, please listen closely. Put constipated child in bat tub. Add EVERY TOY for the tub you can imagine, including ones so they can drink the water. For extra assurances of defecation, add a sibling to the tub. Let the child splash until the older sibling screams "SHE’S POOPING IN THE TUB!!!!" and climbing out the tub in terror.

Yes, I need to write a parenting book. After I have a drink. I really really large drink…Pass me the Baily’s…

Why I feel old even if I am not!

First things first. Soleil slept all night. No wetness! She was very excited and wants to do it again! Yes! Maybe we will finish this week with only 1 kid in diapers and 1 kid completely without!

I was reading on Johnny’s blog about us Young Punks. I don’t really feel young. I have to say that I had learned about all of those things that Johnny commented on even though Watergate happened when I was an infant.
I am not as strong of a history fan as Dr. Jay, but I do want to learn from it. We spent a while this weekend talking about the movie Munich and if it was worth seeing after the reviews are showing it to be a twist on what really happened.

But I digress. I feel old at work. I am one of the older "data aides" here. Most of the people here are either full time scientists (PhD) , post docs (PhD) who are here for a few years and then move on, or data aides (masters or bachelors) who are here for a few years and then go onto grad school. I fall into a little nether land that very few do. I am a data aide who plans to stay for a long time and I don’t plan on getting my PhD.  The women in the next office are 27 and 24. And they talk about being old and not having boy friends. Wow. My 34 (soon to be 35) feels old compared to that. But then again, I was married at 26. My first child at 31. That’s not really old, is it?

My ILs are young. 70 and 75. Not really young, but they act it. My parents are also young 64 and 64…not really old, but sometimes, they act it.

I wonder how much of age is mental and how much is physical? Things that make you wonder…
Just random thoughts on age as I plow through my day…


Edited to add: Ok, now I do feel old. Since I don’t have PT anymore, I went to the gym to exercise. The bikes overlook the squash courts. Here comes in a man, no shirt, bronzed skin, muscles everywhere…Sigh. What a sight! Eye candy, yum! But then I realize that this Harvard boy is that…a BOY.. maybe 20 at most, but definitely under the drinking age…