January 6-12, 2019

January 6 (Su)

When I woke up I noticed that my face is somewhat swollen and redder than the usual. Though my face is redder than the ordinary person, this is because of lupus’ symptom called butterfly rash. I think something is wrong with me. And I also observed that there was a small hematoma that is appearing on my arms.

January 7 (M)

Today, I went to see my friends for the 1^st time. they are actually my classmates that I met in an online Japanese class. My Chinese friend works in a hotel in Gero, Gifu Prefecture and my Taiwanese friend works also in a hotel in Shodoshima, Shikoku Prefecture. They had work off and they went to Osaka for a tour and they contacted me for a meetup. My Chinese friend even gave me a present (pasalubong), nuts, from Gero. It was my Chinese friend’s 1^st time to eat Okonomiyaki. I’m glad that they enjoyed it.

On my way home, I bought this sweet potato cake. It is made from sweet potato and shaped like it too. It has a very creamy taste and very delicious. I really liked it. I was surprised that they make sweet potatoes as a dessert here.

January 8 (T)

I think I really got tired and cold from the yesterday’s meet up. We walked to Nanba, see some tourist spots even though it was cold. Now I think I caught a cold, my throat hurts a little, and my leg muscles hurts too. But I was happy that I was able to meet them.

After I urinated, I somewhat feel a little aching in my lower back and side abdomen. It happened every time I urinated today. I think this is not a symptom of urinary tract infection (UTI). Maybe if it is UTI then, it will hurt while I am urinating, but the pain I am feeling now is different from that.

January 9 (W)

I and my parents went to see the illumination at Osaka Castle. Indeed the castle was beautiful even if it is night. Even though it was cold, I bare with it.

After walking long in the cold, its time to reward ourselves with yakiniku, grilled beef. It is very satisfying and stomach filling. It was my parent’s first time to do yakiniku, and thank God that they enjoyed it, and they ate a lot.

January 10 (Th)

As a part of the winter experience here in Japan, it will not be complete if parents will not experience nabe. So I took them out to eat nabe. We ate motsu nabe, it is pork guts with cabbage and bean sprouts that are boiled in a soy sauce flavored soup. This dish really suits the cold weather.

The little aching in my lower back and side abdomen after I urinate still continues and today it hurts when I urinate, a symptom of UTI. I did my best and drink more water as my doctor advised me.

January 11 (F)

Today, my parents will go home to the Philippines. I will send them to the airport. But we first went to the Philippine Consulate to renew my passport. Thank God that it didn’t take me so much time, just 30 minutes only. And luckily that the consulate is just a 10-minute drive away from home. Then another 1-hour drive to the airport. I really was about to cry when I hugged my parents goodbye. It was really a sad event. It took me almost an hour drive again to get home. When I got home, it was really silent and I felt so empty, then it really got into me that I am alone again. 😢

January 12 (S)

I got tired from driving yesterday and my knees hurt today. As I thought that my hematomas in my arms are fading away, I observed that there are hematomas and spider-like veins appearing on my legs. It is a good thing that due to the weather here, I must dress warmly in pants and long sleeves, with that, hematomas will be hidden.

My medicine dosage is still at:

🌅Morning: 10mg of Predonine, 2 capsules of Cellcept, anti-osteoporosis, half of blood pressure medicine, medicine for uric acid, intestinal medicine, Plaquenil, and additional medicine for infection reduced to every Monday only.

🌜Evening: 7.5mg of Predonine, 3 capsules of Prograf and 2 capsules of Cellcept, anti-cholesterol medicine, half of a blood pressure medicine and sleeping pills #1 & #2.

January 1-5, 2019 Happy New Year!

January 1 (T)

Happy New Year!

I had a typical Japanese breakfast as part of New Year’s celebration. This is soba, wheat noodle, and fish and egg cake. The soba is believed to give long life.

Then, I, my parents and my Japanese friend went to do hatsumode. It is a Japanese tradition during New Year’s to go to a shrine to pay respects and make a wish. Then I took a mikuji. It is like a fortune telling. I got a daikichi, which is the very lucky one. So it says here that; health - will recover; love – good; person waiting for – will come; wish – will come true; lost item – will recover; and others. But there is no guarantee that everything will be as this fortune said, this is just a guide.

Then we went sightseeing at the nearby parks and shopping and food district. We went to see the Tennoji park and Tennoji Zoo.

Then we went to Shinsekai and eat Osaka’s delicacies like okonomiyaki and Kushi katsu. It is basically like a pancake made out of cabbage cooked on top of an iron plate. And Kushi katsu, is anything (pork, beef, quail egg or vegetables) covered with a batter and deep fried. It was very delicious.

January 2 (W)

I really walked a lot yesterday, it was very tiring but I enjoyed sightseeing. I have to pay the price of that enjoyment. My leg muscles really hurt right now. Even though I just ate 1 piece of the quail egg Kushi katsu, my stomach hurts and I am experiencing loose bowel movements (LBM) today. I really guess I cannot eat oily food anymore.

January 3 (W)

When we visited a shrine on the New Year’s, I bought a candy-coated apple, or the so-called ringo ame. It is literally an apple covered with candy. Back then I just saw it in animes, so I tried it. Indeed it is sweet!

January 4 (Th)

With nothing to do, I tried making a chocolate cake. I just used a hot cake mix then added cocoa powder, and for the filling and glazing, I used cream mixed with melted chocolate and I used peaches. Using a hot cake mix was really convenient and fast.

January 5 (F)

After saving up, and buying little by little, I accumulated these snacks. And then I packed it in small bags so that when my parents go home in the Philippines, I can give Christmas presents and pasalubong to my inaanaks (godchildren) and the kids in the neighborhood.

My medicine dosage is still at:

🌅Morning: 10mg of Predonine, 2 capsules of Cellcept, anti-osteoporosis, half of blood pressure medicine, medicine for uric acid, intestinal medicine, Plaquenil, and additional medicine for infection reduced to every Monday only.

🌜Evening: 7.5mg of Predonine, 3 capsules of Prograf and 2 capsules of Cellcept, anti-cholesterol medicine, half of a blood pressure medicine and sleeping pills #1 & #2.

December 22-31, 2018 Good News!

December 22 (S)

From my last post, I wrote about my swelling elbow, today it is getting better. The swelling is subsiding. When I walk, I can feel that my muscles are tightening, though I am exercising every day like walking and riding my bicycle.

December 23 (Su)

It is getting really cold nowadays, and it is getting busy due to the holidays, but here in Japan, everybody is busy because there will be a new year’s break for about a week, and the workload is really increasing. I bet in the Philippines is really busy preparing for Christmas doing shopping, preparing for Noche Buena and family reunions. I understand that it is not in the Japanese culture to celebrate Christmas, so even though it is almost the holidays, everybody is working here.

December 24 (M)

In time for Christmas, I got a package from my Tita who is living in Tokyo. Yehey! She sent me winter clothes, and I am really thankful because I really saved a lot of money. Winter clothes really cost and I have no time to look for second-hand stores here. She is really kind.

December 25 (T)

Even though it is Christmas day, I have to go to work. I know it is sad, but thank God that I am not alone this Christmas! My mother and father are here for the holidays. I made a cake! And the rest is prepared by my mother. A simple Noche Buena with a simple Christmas tree, but extraordinary happiness.

December 26 (W)

As a Christmas gift, I bought an air fryer for my mother and father. I want them also to be careful of the foods that they eat. Everybody loves fried foods, but we have to be careful of the oil intake. I was lucky to find a branded but cheap air fryer.

I think I really got excited during the Christmas because of having a Christmas party at work, together with the children that we are taking care of, so I feel really tired today, my knees are like giving up, I have a hard time standing and it is like there is no strength.

December 27 (Th)

I have to give my best up to today because today is the working day in the daycare center. Thank God that it is not that busy. Since it is the last day, and we will be having a new year’s break, I have to use the remaining food items so it will not be wasted. So I made a pudding cake for the children. Well, everybody has a sweet tooth, thank God they liked it.

December 28 (F)

Today is my outpatient consultation, and I got very good news!

Thanks to the new treatment that I am receiving, it seems that my vitals are getting stable. Even though it is not in the standard levels, but somehow, the item that needs to increase is increasing, and the items that need to decrease are stabilizing. Some of my medicines are stopped, like the zinc supplement and ferrous sulfate and the anti-infection medicine from 3 times a week was reduced to once a week. And the good thing is that, from 2 times a month of outpatient appointments, it has been reduced to once a month! Isn’t it good?!

But I have to see an eye doctor, because I complained to Kitabayashi Sensei, mama doctor, that I am experiencing a blurry vision especially when I look down or when I read books. When I was still in the hospital, if I was correct, last August, I had my eye checked and there was nothing wrong. The pharmacist also told me that I have to see an eye doctor because one of the medicines that I am taking might have a side effect on the eyes.

I got my IV. But I experienced fatigue and a little pain in my stomach after it. Since I came to the hospital by car and I have to drive home by myself, I need to rest for a while. I went again to the 14th-floor ward, but I am a little sad because I wasn’t able to meet Nagatsuji Sensei today. I wanted to greet him for the new years. It will be a month again to have a chance to meet him.  

 Since it is holidays, the hospital was not crowded and my appointments for today ended fast.

December 29 (S)

These are my medicines. Since my outpatient consultation was reduced to once a month, I received a prescription that is good for a month. Look at the volume of the medicine! it really surprised me that I have to use this much!

December 30 (Su)

Today I got the new passport for the incurable disease insurance. Here in Japan, they have a special grant from the government so that the medical fees and medicines of people with the so-called なんびょう「難病」or incurable disease will be lessened. And I am really saved because of this! If not, the medical cost will be really high, so high that even I work myself to death I cannot afford it. This grant should be renewed every year, so in time for my next appointment, I received the new passport.

December 31 (M)

As a preparation for the Media Noche, I made a blueberry cheesecake! And we had pork steak too. The way of celebrating the New Year ’s Eve here and in the Philippines is really different.  My parents had a culture shock because it is very silent here; I bet everybody in the Philippines is now having an enjoyable and noisy atmosphere.

My new medicine dosage is:

🌅Morning: 10mg of Predonine, 2 capsules of Cellcept, anti-osteoporosis, half of blood pressure medicine, medicine for uric acid, intestinal medicine, Plaquenil, and additional medicine for infection reduced to every Monday only.

🌜Evening: 7.5mg of Predonine, 3 capsules of Prograf and 2 capsules of Cellcept, anti-cholesterol medicine, half of a blood pressure medicine and sleeping pills #1 & #2.