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.

  

November 16 – 22, 2018 1st sight seeing after hospital discharge!

November 16 (F)

Today was my outpatient consultation, but from today, my doctor will be mama doctor, Kitabayashi Sensei. My schedule was 10:00 am JST but I have to go to the hospital one hour early for the blood and urine test. After the test, I decided to go to the 14^th floor to greet the nurses. Luckily, one of the nephrologists came and he said that he will call Nagatsuji Sensei.

So I was able to meet Nagatsuji Sensei and he gave me a consultation while we are standing in the front desk, he said that he will be writing it down on my records but I have to attend to the consultation with Kitabayashi Sensei. The consultation with mama doctor was fine and she said that she will not be changing the dosage of the medicine for now. She also permitted me to go to a hot spring or go out for sightseeing but I should have company and I should not go to a far place yet. I cannot also eat sushi or raw foods for now she said.

Since I am going to change the pharmacy (from now, I will be using the pharmacy near my apartment), I decided to go to Osaka Castle first before going home. I have to walk from the station to the Osaka Park. It was a good thing that the weather was fine, not too sunny and not too cold, but I did sweat a lot. I got easily tired and my leg muscles are aching. I was about to give up because there stairs going to the main castle, but I was able to climb up after many breaks. I did many breaks while walking.

Then I went to the pharmacy and give the prescriptions, since they will be packing the medicines per morning and night time, it will take sometime, and it is a good thing for me because they were willing to deliver it to my house, but I said just call me and I will come to pick the medicines. The pharmacists are so nice and they give me a thorough explanation of the medicines, and they even advise me to get the mobile application of my medicine booklet. (wow, high-tech!)

I walk a lot and when I got home I am very tired and my muscles are aching.

November 17 (S)

It is a good thing that I am on a rest day today. My body got tired from yesterday and my muscles are aching. At some point, I am hearing something ringing in my ear like a “chi—n” sound for about 10 seconds. I don’t know what is this, but after that, I am starting o feel a little dizzy.

November 18 (Su)

I woke up early to watch the Sunday Mass live via SNS from Quiapo church.

Today my stomach is aching and I have really bad LBM, it is so bad that it was watery and when I fart I have a clear substance discharging out of my body. I think it is oil or I don’t know. It has a consistency like of an egg white. I decided to have my stomach rest and not eat anything except for soup.  And up to today, my leg muscles are aching from walking too much the other day.

November 19 (M)

I was surprised to see Christmas decorations on the 1st floor of the apartment. Oh my! it is Christmas time! 

My leg muscles are getting better, I have to exercise it more so I can build some stamina. I still have the white substance with my fart. But after researching it, it was a good thing that it is transparent, if there is color pink, then it means that my intestines are damaged. The article that I read also states that it is normal because I had a bad LBM. But today it is starting to decrease a little. I hope that it will stop today.

November 20 (T)

The discharge with my fast has stopped, and as I thought my stomach is getting okay, but after eating breakfast my stomach really hurt. I have to take painkillers. I took the mild one first but to no avail, I have to take the strong ones after 2 hours. Recently, every day I have to take the strong painkillers after lunch because my stomach is aching. Though the painkillers took effect, I still have a strange feeling in my stomach.

November 21 (W)

Yesterday was a tough day dealing with my stomach. I have to eat little amount to today because I almost went to the toilet 6 times after breakfast. I tried to avoid oily and fatty foods but I am still having LBM. Upon reading the medicine booklet and as per explanation of the pharmacist, most of the medicines that I am taking may have LBM as a side effect. But I have no other choice but to take all the medicines since I need it. I can deal with the LBM but I hope that my stomach will not hurt.

November 22 (Th)

Today I have a little bit of high blood pressure. I thought that I had it regulated recently because my BPs were good, and I also reviewed the data from the smartwatch. Well, I think there are days that I have high blood pressures too, but the good thing is that I am not feeling dizzy or anything serious.

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 8-15, 2018

November 8 (Th)

As expected, in the morning I still now having LBM in the morning, but I have to do my best. I took the strong painkiller but I can still feel my stomach moves. Since today is Thursday and tomorrow is our rest day, I and my Indian friend decided to go to a spa. She is a vegetarian, so she has to cook our dinner. I just brought some muffins and we made this dessert. She also invited our friend from work and her former classmate. We finished dinner late so we weren’t able to go to the spa.

November 9 (F)

It is starting to get cold here, so I decided to buy an electric blanket. I think this is effective and power saving than using the regular heater. Plus the heater can dry my skin and throat.

November 10 (S)

I’m starting to feel acidic in the evening. Maybe because I ate too much?! I am used to eating small portions only. I am having a hard time sleeping. It feels like the food that I ate will go back, I am feeling nauseous.

November 11 (Su)

Like the usual, I am still having LBM in the morning, but today, my stomach, back, and shoulders hurt too. Recently, I am taking the strong pain reliever after I ate lunch. I am also feeling dizzy, especially when I stand up.

November 12 (M)

Today my stomach really hurts that I took the strong pain reliever twice. I also noticed that my bruises are coming out. Some of it came out even though I didn’t bump into anything.

November 13 (T)

I am feeling better today, but still, as a protection from pain, I am taking pain relievers. My friend gave me this smartwatch. It can be linked to a mobile phone application to monitor the pulse, blood pressure, steps per day and hours slept. I was surprised that the pulse and blood pressure is measured every after 30 minutes.

November 14 (W)

Last night I tried to sleep without taking the sleeping pills #1 & #2, but it failed. I had to have troubles with sleeping, when I realized, it was already 12:00 am, then when I go to the toilet, I am having a hard time falling back to sleep. I am feeling tired today.

November 15 (Th)

This past week, my blood pressure averaged 140/110. This is high compared to the normal blood pressure of my age, 120/80. But when I take my medicines, my blood pressure is getting better. Sometimes, I can feel that my nape hurt, I think at those times, my blood pressure is going up.

I also watched a television program that if a patient is using strong pain relievers or steroids, it can lead to the side effect of having LBM. I have to ask mama doctor, Kitabayashi Sensei, tomorrow. I will be going for an outpatient consultation tomorrow.

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.