I have lupus. Or, one doctor said alternatively, or more accurately, “mixed connective tissue disease”. This diagnosis fits better for my auto-antibody profile, but in my case, lupus symptom is most prominent and anti-dsDNA (lupus-specific antibody) was so high, so another rheumatologist called simply “lupus”. So I will go with that diagnosis.
It began around 2006. Since we moved to midwest from California, I enjoyed playing with K and S with the swing set we built and gardening. It is our first (and only so far) own house. But in the spring of 2006, I got so tired after going outside. At first I thought I was tired by gardening and playing. But soon it was too hard I stopped going out in the backyard all together. This frustrated K, who cannot stay outdoor without supervision, and who loved swinging so much. My husband was also very frustrated, because I stopped caring for my vegetable and herb garden and all covered with weeds.
Around that time, I had a very frustrating incident with K’s school – most parents with a kid with special needs have at least one. After the incident, my lips started to thicken so suddenly. It was angioedema. Itself is usually harmless and cure on its own but I panicked and called my doctor. She saw me a few days after and told me it was angioedema and often connected to allergy. So she referred me to an allergist and boy, he found tons of allergies to weeds and tree pollen plus roaches and mites. I decided to have allergy shots because I wanted to be outside. It didn’t help. After all, allergy shots won’t show immediate results. Antihistamine did help with allergy symptoms like my dripping nose, but still I was exhausted after being outside.
It was just the beginning. To be continued.
My daughter, S, is now 11 years old. She is something…really hard to explain.
Outside she is a simple girl: loves gymnastics and baking. She used to love reading a lot, but now sort of replaced by playing with her iPhone games and watching YouTube videos.
But she does not fit a mold. First, she’s really tiny -about 5th percentile her age. Yet she skipped a grade, so her peers are even taller and bigger. It’s hopeless to imagine that she will be taller that someone in her class.
That is beneficial for gymnastics, however. And she is blessed with super flexible hip joints. And she DOES have a strong will, which I think is the most important quality for success in gymnastics. As a result, she hardly misses any practice and thus improving consistently. Not a gymnast genius, but I believe she is a decent one.
And her passion for baking is getting bigger every year. So does my belly and blood sugar by eating her creations. Now she can use oven and stove without adult supervision, her cooking and baking is limited only by her gymnastics schedule, 15 hours a week, a lot, but a bit less than most gymnasts at her level.
She is smart, passionate, and STUBBORN. She hates wearing cute clothes or any “suggestive” ones. I have no worry for her breaking dress code. Yet this makes me worry that she stands out even further from her peers. I would like her to have friends and enjoy true friendship.
Well, I will write more and more about her, because she occupies a big portion of my life. After all, I’m a mama. So I stop here for now.
This morning my hubby and I cleaned fridge. I know I must do more often, but I’m just too lazy. In preparation, for the last two weeks, I minimized purchasing groceries and used whatever I had. In such Cookpad is my greatest friend!
Now I have a clean fridge:
Yay now I have a clean fridge!
I also cleaned under fridge space and found a lot of stuff—lots of heads of niboshi (dried anchovies that we use as treat for my cats), cat hair, dusts, and among them I found lots of K’s toys and this picture drawn years ago by my daughter:
Then I had this sad feeling of “erasing K’s existence from this house”. I profoundly felt this feeling when I bought half dozen of GLASS TUMBLERS. We were all plastic household. My hubby looked happy to have a neat sets of glasses, but I felt like I’m making this house inhabitable for K. Make it unfriendly for K one space at a time.
This feeling is the cost of placing him to a group home. But this won’t change the fact and conviction that I made the right decision.
The evidence of his existence is everywhere I haven’t cleaned. Hiding stuff under or behind furniture was one of K’s favorite activities. So I have this feeling pretty often. But this time what came out made me feel more. The drawing of my family, all four, as my daughter saw it when she was probably 5 or so. No longer.
At least I have a clean fridge even for a few days. It’s a good thing.
I cannot be whole without him. And any blog not mentioning him must not be mine. My big ambition is to post small stories at a time and eventually readers (especially my daughter) will know who he is, why he is where he is, and his past and present and future.
K is 14 years old, severely autistic, and practically nonverbal. He lives in a group home near his school, about 2 hour drive from my house.
That fact alone tells that K was quite unusual. And so is myself. Bottom line is, my family would disintegrate if we kept K in my home. But those stories will come later.
It’s been almost a year since the painful transition. But everyone who is involved with K’s life says I made the right decision. About four months after being moved, he started to laugh and smile. And he enjoys my visit almost every week. Even though I can’t help but think, “I was unable to make him smile at home like that”, I enjoy his current smile and cuddliness.
K and me
I like Spinach. And Indian cuisine. I recently embarked on making Indian dish on my own and this is the start.
I used this recipe from Food Network but I modified it too much and now it’s more like its own recipe.
- For flavored tofu (use in place of paneer):
1 teaspoon turmeric
1/2 teaspoon cayenne
pinch sea salt
2 tablespoons vegetable oil (I use Canola)
1 (16-19 oz.) pack of extra firm tofu, cubed to about 1/2″
2 (12 oz. package) frozen chopped spinach
1 tablespoon vegetable oil
1 medium onion, finely chopped
2 tablespoon garlic and ginger paste (available at Asian grocery store)
1/3 halapeno pepper, very finely chopped (this is very small amount. I don’t like it too spicy. But original recipe called 1 large serrano chile! I can’t do that)
1 teaspoon garam masala
2 teaspoons ground coriander
1 1/2 teaspoon ground cumin
1/2 cup plain yogurt
- For turmeric flavored rice:
2 cups brown Basmati rice
boiling water (maybe 3-4 quarts)
1 teaspoon turmeric
- Cut tofu into 1/2″ to 3/4″ cubes. Extra firm tofu can be spread out on tea towel to remove water. If you use regular firm tofu, cube and then microwave for 2 minutes to remove excess water.
- Whisk turmeric, cayenne pepper, salt and oil together and coat the tofu cubes with mixture. Leave until ready to cook. I usually start Saag and when my hands are free, I start frying tofu.
- Heat frying pan in medium-high heat, add marinated tofu. Make sure at least three surfaces of tofu are golden brown. Set aside.
- Thaw the spinach overnight in the fridge. In a hurry, you may microwave for 5-8 min in a large bowl, mixing every 2 minutes.
- Add about 2 tablespoons of oil to the pan. (optional: if you hate crying with onions, microwave onion separately for about 4 minutes, then cook together.) Add onions, garlic-ginger paste, halapeno pepper. First saute in high heat then after onion becomes cooked, lower the heat and cook until caramelized but not scorched. It takes a long time. You don’t have to stir all the time. I usually stir about every minutes.
- Add other spices and stir further. If needed, add one to two tablespoons of water to prevent scorching. Saute until spices’ fragrant gives off.
- Add spinach and stir well. If raw spinach is used, add water, but with frozen spinach, it’s not really needed. Cook for about 5 min
- At the low heat, add yogurt and stir. Add fried tofu cubes and cook until tofu cubes are warmed. Serve with turmeric rice (or naan or whatever you like!).
Turmeric flavored rice:
- Boil a lot of water, at least 5 times the volume of rice.
- Wash rice in colander.
- Add turmeric and rice. Keep at low boil for 20-30 minutes. Fresher rice cooks faster.
Note: this is VERY MILD recipe. I don’t like spicy and so does my daughter. Original recipe called for ONE SERRANO CHILE! I can’t take that for sure 😮
I love acupuncture. So I see a wonderful osteopathic physician who does medical acupuncture regularly.
But yesterday, I complained of pain on joints on my right side – wrist, elbow, shoulder, hip (this is scary!), and knee. Only on right side. And I thought my newly developed habit of exercise (30 min walk everyday, 40 min strength training twice a week) was to blame. He told me it might be, but I must continue exercising as he can fix the alignment of my right side.
So he did lots of osteopathic manipulation. It worked! Elbow had some residual pain, which is no surprise, as my right elbows aches at all time, but all other joints were pain-free. Then I had a really relaxing acupuncture. I loved it.
But when I got home, I started to notice the tension on my back. It started from my left lower back but now both sides of lower back ache.
Fortunately, it wasn’t too bad, so I could still do my walking workout. And I know from my long 30 year career of back pain, walking is good for back pain.
But I still remain wondering…does osteopathic manipulation in one area cause pain in the other? I don’t doubt the doctor’s skill. He’s considered one of the best DO in town.
I hope I can go through today’s work, close back stress sitting at microtome.
As a Japanese, and a book lover, I frequently use Amazon.co.jp. When I’m in no hurry, I send the books to my brother’s place in Japan and when he ships my son’s favorite crackers, he includes the books. In a hurry, I pay so much extra (minimum $30) to ship them to the United States. So, Kindle should be my savior, right? I can order anywhere in the world and read immediately. Well, at least to buy Japanese Kindle books, I have to prove my residency in Japan by using a credit card issued in Japan.
WTH. I can buy the print version of the exact same book written by the same author.Books are about content, not format. They of course cites a kind of “copyright issues” not to sell, but I thought copyright belongs to content, not format. What makes me madder is Amazon.co.jp still sends me promotion for Kindle readers! Hey, even if I buy it, I cannot buy contents! You must know that! You didn’t sell me “From Eroica with love 30th volume”! And I already have Kindle sold in the U.S., though I mostly read through my iPhone Kindle App.
I imagine reading Japanese books and manga in Kindle….for example, I recently finished “Death Note” (well, it’s kind of old but that’s not relevant here). In English. As I read, I wonder how they were worded originally. A lot can be lost in translation! But I won’t pay hundreds of dollars to buy Japanese version of Death note. But, to be honest, if I could buy a kindle version, probably I couldn’t have held my instinct and ended up buying them. So you lost my business, .co.jp!