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.

December 15-21, 2018 Hot spring trip!

December 15 (S)

I got tired yesterday because of the hospital appointment and driving to and from Kansai airport. Though my body is feeling heavy and I am lacking sleep, I feel happy and excited. I am eating Philippine sweets non-stop. 

December 16 (Su)

 I tried eating this Hiroshima version of okonomiyaki. It is a cabbage pancake but for the Hiroshima version they mostly more eggs and they put stir-fried noodles as filling then topped with okomi sauce. I thought the taste will be strange but it really was very delicious!

Now my excitement is wearing down and I can feel muscle pain especially in my arms. Is it because of the vein that erupted or is it because of the symptom of Lupus? I am confused.

December 17 (M)

As a pass time, I tried playing Sudoku. So basically I have to place the number tiles 1-9 but there should be no redundancy horizontally, vertically and 1/9 section. It was quite hard but after passing so much -time, I got to solve one problem! It was so fulfilling!

Today I can feel back pain, but my arm pain is starting to get better.

December 18 (T)

I and my parents had a late breakfast a café and took a walk to the nearby supermarket.

I feel that my stomach is bloated again. I feel that my stomach is getting very big that my lower back hurt. It was a long time since I felt this; I thought that it has gone away. Is it because I am eating a lot?

December 19 (W)

Can you guess what this is? This is a picture of my swollen elbow. I don’t know but when I woke up, it was like this.

Also, when I walk, it is like my leg muscles are tightening, it is really hard to walk.

December 21 (F)

It is a rest day! I and my parents decided to go to Kobe’s Mt. Rokko Garden Terrace. I have to drive almost an hour to have an overlooking view of some part of Kobe. But unfortunately, it was a cloudy day, we didn’t get the chance to see a very good view.

Then we headed to Arima Onsen, a hot spring town. There are 2 types of natural hot spring water in Arima Onsen. The golden water which has high iron content and the silver water which is rich in iron and radium. We took a stroll over the town.

Then this was for lunch! Soba (wheat flour noodles) and chahan (fried rice). It was very delicious and perfect for the cold weather of the mountain.

It is said that the hot springs are good for body and muscle pains so, we had a dip at the hot spring in the Kin no Yu (Golden water). There is 3 water temperature to choose from, 40, 42 and 44 degree Celsius. I wasn’t able to have a dip at the 44 degree Celsius spring because it was too hot for me. But I had a really good time and I was feeling great!

Before we headed back to Osaka, we had coffee and a taste of Arima’s delicacy. The Arima roll, which tastes like a salted-caramel cake roll, but the salt used for this cake is the salt from the hot spring waters. And the black bean tart; the black beans and the tart had a very good combination. I also had a taste of the Arima’s coffee; which uses coffee beans that were harvested from the coffee farms in Arima.

We really had a good and relaxing time! Thank God the weather was fine and we had a safe journey.

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 every Monday, Wednesday and Friday. 

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

December 8 – 14, 2018

December 8 (S)

I got another delivery today too. The one on the right is a powder substance that will be added to meals in order to make the food easy to swallow and also helps in energy level intake. I have to take this as a part of my kidney patient’s diet. And the other one is the protein cut rice grain. This is the same rice that was being given to me when I was still hospitalized. With regular rice, I can only eat up to 50 grams per meal but with this protein cut rice, I can eat up to 100 grams per meal. This is helpful because recently my weight is going down that my body weight and height is not proportioned anymore.

I got my fever blister broken today and it hurts so I have to eat carefully and still my leg muscles hurt.

December 9 (Su)

I got this special coupon from Mcdonald’s (also referred to by people in the Kansai area as Makku / Mc), I am getting a free small fries! Lucky! When I was dining at Mc’s I was asked to move to the next vacant seat so their 3 customers can sit on my 4-seater place. It was a small favor but they rewarded me too in return. I wish we have that also back home.

December 10 (M)

My muscle pain is getting worse and my finger is swelling. I don’t know what this is now because from my past experiences if I have muscle pains, it only lasts for 2-3 days, but now it is like 1 week and it is still like on its peak.

December 11 (T)

My muscles are getting better and the swelling of my finger is now gone. Even though it still hurts, I’m a bit relieved.

December 12 (W)

I got my smart weighing scale! So this weighing scale has a mobile application that can help me monitor my body composition. It can also alert me if I am too skinny or low body fluid level and others. Nowadays there are so many high technology health monitoring products and I'm a bit interested.

December 13 (Th)

I am glad that I am feeling fine! Tomorrow is my outpatient consultation and my parents are coming here in Japan. I am excited to see them again since May.

December 14 (F)

As per my checkup, my statistics are still almost the same as my previous visit. Kitabayashi Sensei, the mama doctor, said that there were changes in values it was just a little, nothing serious. So my medicines were still the same dosage. But since it is December, I have to receive the monthly shot for bone protection. Also today, I will receive the 2^nd IV of the new treatment, Benlysta. This is the 2^nd part of the 6 part treatment. After the treatment, I experienced a headache and I felt so tired. It was a good thing that I came to the hospital by car so I only felt a little stress when traveling.

The nurse who gave the IV forced the needle to be put on the vein that was used for the blood test, it was not yet healed so when the medicine went in, the vein erupted and this happens. It hurt.

I had the chance to see my nurse friends and the other doctors too. I was also lucky to meet Nagatsuji Sensei by chance. He said that on my next outpatient consultation since it will be the end of the year and patients are few if I want I can be hospitalized. I know it was just a joke, but still, I don’t want to spend the holidays in the hospital. Hahaha! I also had the chance to meet Asai Sensei, the surgeon that practices his English with me, it was a long time since I last saw him.

My parents came here to Japan from the Philippines to visit me! I am so happy. But I am worried if they can manage the cold weather (about 6 degrees Celcius), it was a good thing that they are prepared and brought winter clothes. They even brought these Pasalubongs!

Even though I am tired today, I am sooooo happpyyyy!!

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 every Monday, Wednesday and Friday. 

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

December 1-7, 2018

So it is December!✨🎄 It's winter season and it is getting cold here now. ⛄

December 1 (S)

After my consultation from yesterday, maybe I got tired and my leg muscles and shoulder hurt. But I took my rest day to go somewhere and I found this store selling Japanese pancake with sweet red bean paste.  I chose the red bean paste and white bean paste. The filling was almost 80% of a piece it was really worth it for the price of 85yen per piece. It was not that sweet too, very delicious.

December 2 (Su)

Today is the Japanese LanaguageProficeincy Test, I took Level 1, (which is the highest level among the 5 levels). The test site is 1 hour away from my house and my body is aching, so I decided to go out early. Though I did take painkillers, I can still feel muscle and stomach pain is this may be because of stress and nervousness. But I was glad that LBM was controlled.

This is my lunch for the exam day. It was very cold that day, and I have to eat lunch outside the rooms. At night when I got home, I was so tired my whole body aches and I had a cough.

The exam was really difficult and I had not enough time to read all the problems, especially the reading comprehension part. It will take a miracle for me to pass it. I wish for a miracle!!! 🙏🙇

December 3 (M)

Tired and nervous from yesterday’s exam, when I woke up today, I can’t get up. Literally, my body is hurting., especially my leg and lower bacTravelinging for almost 3 hours with transfers of buses and trains, I was really tired. Even though I took the strong painkiller it was like it has no effect. I even put salonpas.

December 4(T)

Today is the birthday of my mother. I and my sister, through the help of our aunt, sent our mother cake, roses and noodles. She was really happy and surprised.

I have noticed that my knee area is swelling and it really hurt. I can’t bend it easily when I walk or ride the bicycle. I tried to take the painkiller that makes me sleepy, Ririka, it lessen the pain but it still aches.  As its side effect, when I go to the toilet at midnight, I was really dizzy.

December 5 (W)

I am expecting that today my muscle aches will be gone because when I was confined in the hospital, muscle aches usually last for 2-3 days only, but up to today, the aches is still like in its peak, and my knees are still swelling. When I walk, it is obvious that I am hurting in my knees.

December 6 (Th)

Still no change in my leg muscles, luckily my shoulder and back pains are improving and starts to fade away. Also when I drink painkiller, I can’t feel the pain.

December 7 (F)

Today I got my ordered air fryer delivered! I already tried it and cooked chicken fingers! It was really crunchy and indeed no oil needed. The chicken was moist and juicy and not greasy. It is really good for the health! I am so happy.😋

My friend also gave me a recipe book for kidney patients. It includes ways how to prepare meals with low salt and high energy. It includes recipes from starters to desserts.

With in this week, there is still no change about my LBM, I still have it atleast 4 times a day. My blood pressure is averaging at 130/110. And from my previous outpatient consultation last Nov. 14 my weight was 48.9 kilos, last Nov. 30 consultations, my weight was down to 47.8 kilos, decreased again by 1 kilo. My BMI and height is not balanced anymore. I am worried.

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 every Monday, Wednesday and Friday. 

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

November 23-30, 2018 New Treatment

November 23 (F)

Today I got a reply from a Japanese doctor friend of mine. I asked him about my LBM, and he also thinks that it is the side effect of Cellcept. But he suggested also that I should not give up on it because it is a good medicine for my SLE.

November 24 (S)

I observed that my cheeks and nose bridge is redder than the usual. This is called butterfly rash for my case. I noticed that if I am not feeling well, this butterfly rash is getting worst too. Today my muscles hurt, maybe that is why.

November 25(Sun)

I am feeling okay today than yesterday so I decided to go to the supermarket and see what products are new. I found these chocolate coated cranberries. I have read in an article on the internet that cranberries are a good source of vitamins.

November 26(M)

As I thought that I am feeling better, when I woke up today, I have back pain. It is like my back muscles are like paper that is being cut. I decided to drink the mild painkiller, but it seems like that it was not effecting. I thought of taking Ririka because it is good for the over-excited nerves that cause pain, but I will be sleepy during the day so I decided to take the strong painkiller. But it seems like the medicines are slow in taking effect, I can still feel the pain after 2 hours.

November 27 (T)

While I was driving, I saw a St. Mary’s church, but it unlucky that it is far from my home and if ever I want to go to this church I have to go by car.

Today too, my back muscles hurt, but today is better than yesterday. I took the strong painkillers. I felt okay during the whole day. Is it because the weather here is getting cold every day that is why my muscles are aching? I have to ask my doctors.

November 28 (W)

I and my friend went to eat crabs 🦀! Here in Japan, if it is winter, it is the season of crabs. It is my first time to eat a crab course meal. I hope that it will not have a bad effect on my stomach later. But I guess that I will be ok because the volume is not that many. But I have to skip the crab tempura and I only eat a small portion of the crab rice. It was very delicious!😋

November 29 (Th)

I and my 2 younger friends went for a drive and we ended up at the rooftop parking of a game center. I got this picture. At least I posted here in my blog another night view, not always the night view from the hospital window.

November 30 (F)

Today is my outpatient consultation with mama doctor, Kitabayashi Sensei. I was so lucky to meet Nagatsuji Sensei too today. When I visited the ward, he was walking behind me and he called me. I also met the other doctors of the Kidney Department. I was so happy to see them, in fact, I met almost all of them today. 👧

For this week my average blood pressure was 130/100. A little high if compared to the normal. My weight also decreased from 48.8 kilos to 47.9 kilos. My lab test was almost the same as the last consultation day.

Today, I will be having a new treatment by IV. It was sudden to start today, but since it will coincide with my outpatient consultation days and the medicine is already available, I decided to start today. So the new treatment is the administration of Benlysta. This drug is the 1^st in the world to be approved for treatment of SLE. So I am very lucky to receive this treatment! Also, it is only recently that the Japanese regulatory body for medicines approve this for use. This treatment is available via self injection or IV. I decided to take the IV version, because I might have an error if it is self administered. So the IV will be in 6 series, 4 IV every after 2 weeks and the remaining 2 every after month, a total of 4 months. The IV administration will be 1 hour and a half. I have to extend my stay in the hospital during my outpatient days, it will take me almost a whole day. But luckily, I don’t have to be admitted just for that because they have a room for treatments like this wherein there are beds for patients who will have IV.

I felt really tired after the IV. It was a good thing that I took time while waiting for my number to be called in the cashier. I had a rest before I went home. Next time, I have to bring my lunch so I can eat before having the IV.

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 every Monday, Wednesday and Friday. 

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