June 16 - 22, 2019 A week vacation?

After being free from the hospital  for about 7 months who would have thought that I had to be hospitalized again. This last 7 months as much as possible I endured and bared the pain so that I will not be admitted. But I this time last Thursday,June 20,I was rushed to the hospital. 

It started last week when I woke up in the morning I am feeling pain in my feet especially when I walk. My fingers too are swelling. But last Tuesday, even though I took pain killers,it was like it didn’t worked. The whole day my feet hurt. I felt really tired and sleepy. But I still managed to go to work.

Then Wednesday, I felt better but I am experiencing muscle cramps especially on my fingers. 

Thursday, when I woke up at around 5:00 am,  I wanted to go to the toilet but I can’t move my body. I tried hard for about 10 minutes and I was able to sit. I tried standing up but as I step my feet it really hurt I was really crying. It really felt a long way to the toilet and I had a hard time bending my knees it took me about 30 minutes for that trip to the toilet. Even though I took pain killers it didn’t work and my whole body ached. I also had fever. 

I called my friend to help me and we decided to go to the nearby clinic. But the doctor there is not my attending physician,so the clinic just called an ambulance for me and we went to the hospital to see my doctor. 

Nagatsuji Sensei welcomed me at the Emergency Room and I don’t know if we will be happy to see each other. The last time I went to the hospital I went to greet him and we were just joking about me admitted,and we didn’t expect that we will be meeting in the ER. He ordered that I have to under go blood test, ECG, X-ray, and CT scan. 

As the results came,Nagatsuji sensei decided that I have to be confined. Because according to the findings,my albumin level,body nutrition,went bad that my intestines are a little swollen which cause the edema to worsen. There is also possibility of infection in my intestines. 

As treatment my team of doctors decided that I have to receive 250mg pulse steroid,albumin and 2 shots of laysix (to make urination easier)via IV for 3 days from Thursday to Saturday. The doctors said that if the medicines are in IV,the body can absorb it quickly and the effects are greater and faster. 

I am feeling better now, the edema is almost gone and I am able to walk since Friday. I exercised in the garden. It has been a while, I missed the view.

As planned,starting Sunday,the 20mg steroids and a shot of lay six will administered via IV. Then if the blood test on Monday will have a good result,my medicines will be back to the normal tablets. I hope I can be discharged as early as Monday but Nagatsuji Sensei told me that Tuesday will be a little tight. 

I guess I will be staying here in this "hotel" until next week.

June 9 - 15,2019

I noticed that my white hair are appearing. So I dyed my hair dark brown. But when I washed it ,it was super black and every one noticed that I colored my hair,they said that it is like I came out of a drawing book,my hair was so black.

My friend went to Osaka for work and visited me. I am so happy because when we are in the Philippines,our schedules didn’t matched up and we were not able to meet. This time we had yakiniku for dinner and we went to a near by izakaya to sit and talk for a long time. It was very fun. The next day,luckily my stomach didn’t hurt even though I ate meat and fried foods. Once again my attempt to eat vegetables only was ruined. I will try harder next time.

At last,an instruction from the immigration office came. This is the list that me and my employer should pass to the immigration office. The deadline for this is up to the 20th but my employer was kind enough to finish everything and I hand delivered the documents last June 13. I hope my visa extension will be approved. 

Once again I got a very belated birthday gift from my coworker. It is a very cute panda socks and a Disney pouch. I was so lucky. 

I also got this very elegant book marks as a souvenir from my coworker. I will use this on my study books. 

This week I injected benlysta in my left thigh. I am getting used to it. But there are marks from the shot last week. But I think it is fine because it is hidden under my clothes. The day I inject, I am feeling sleepy and tired. It is a good thing that Friday is my rest day and I can sleep all I want.

The day after I ate meat I had slight edema on my fingertips and feet. Recently when I wake up and walk my feet hurt. But I need to go to the toilet so I am really bearing it. I am taking pain killers at noon so in time for my work the pain killers are in effect so I can do my job. 

Compared from before,I am feeling great in the morning,  but it seems recently,I am feeling pain in the morning and feeling energetic in the evening. 

My medicine dosage:

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

Noon: furosemide (to make urination easier) and pain killer + intestinal medicine
Benlysta A self injection every Friday

🌃Evening: 7.5mg of Predonine, 2.5 capsules of Prograf , 2 capsules of Cellcept, anti-cholesterol medicine, half tablet of a blood pressure medicine, and sleeping pills #1 & #2.

June 2 - 8, 2019

After cramming,  I finally finished reading the half part of these books and I am able to finish the midterm exam. The exam is due on June 4,but I will mail it today June 2.

It was a long time since I had the chance to eat Kentucky Fried Chicken. As expected,the menu here and in the Philippines is not the same. They are not selling rice here,but biscuit instead. It was a good thing that even though I ate this oily fried chicken,my stomach didn’t hurt. 

I got this cute towel as a belated birthday gift from my coworker. The color is really fit for the summer season.

So it is Friday and I will be self injecting my treatment, benlysta. I am a little nervous. I already took it out of the refrigerator 30 minutes before injecting. If the medicine is cold,it will hurt more when it enters the body. I injected it on my right thigh. The needle was thick so it was painful. The liquid took 15 seconds to enter my body then I waited for 3 seconds then I took the needle out.  So it just totaled 18 seconds and it was done.

This is what the spot looks like day after I injected Benlysta. It is just like a mosquito bite. I prefer this than the IV hemorrhages.

As I took the 1st injection last week in the hospital,thinking  about this week,I was feeling energized and there were no new edema that showed up. But some accumulated fats under my arms formed. It is still little but I think it will be big. It is not painful or anything it is just a lump and it is some kind of hard. 

My medicine dosage:

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

Noon: furosemide (to make urination easier) and pain killer + intestinal medicine
Benlysta A self injection every Friday

🌃Evening: 7.5mg of Predonine, 2.5 capsules of Prograf , 2 capsules of Cellcept, anti-cholesterol medicine, half tablet of a blood pressure medicine, and sleeping pills #1 & #2.

May 26 - Jun 1, 2019 Happy birthday to me!

  It is my birthday and I am busy from early in the morning. I went to the immigration office to follow up my visa extension. Still there was no news and the officer only told me that the regular waiting time for now is 3-4 months. This is due to the influx of foreign workers here in Japan starting this April.

At work,I and the kids made this cake and pasta for my birthday. 

At home I ate this cake for my birthday it was delicious! 

And as a gift to myself I bought this dress and rubber shoes. I chose the shoes because the front part has a lot of room even if my foot has edema it will not be tight. It’s light and cheap. 

My coworker went to Vietnam and she gave me this beautiful pouch. This is so cute that I don’t want to use it.

I went to the hospital for my monthly check up. The statistics were not that good. The values for c3 and c4 , the score for my immune system, which supposed to gobe up went down. The albumin, body's nutrition level, went down. And the DNA, which measure the lupus activity, went up instead of going down. Well, mama doctor told me that there is nothing to worry for now. She dimished my high blood pressure medicine since my blood pressure is already stable.  I also asked mama doctor to let me take pain reliver only as need. I got my benlysta treatment changed from IV to self injection. So every friday I will have to inject my self. We will see if this will have a new effect because when I am receiving it via IV, 2 weeks after I am feeling not that  good. I was thinking that the medicine's effect is wearing off. So we will try this weekly injection. A nurse taught me how to use it. We even used a practice kit. It was so fun.

I planned to change my diet to all vegetable diet and as much as possible I don’t want to eat meat, but as a birthday treat my friend feed me Sashimi, raw tuna fish, it is one of my favorite and I can’t help but to eat. He said make my birthday a cheat day. 

There were edema in my hands and feet. I had a hard time walking some days but I managed it though.  

My new medicine dosage:

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

☀　Noon: furosemide (to make urination easier) and pain killer + intestinal medicine
Benlysta A self injection every Friday

🌃Evening: 7.5mg of Predonine, 2.5 capsules of Prograf , 2 capsules of Cellcept, anti-cholesterol medicine, half tablet of a blood pressure medicine, and sleeping pills #1 & #2.

April 21-27, 2019

I am feeling really heavy and I think I have a fever. I don’t know, but today’s work was not tiring. I got my back massaged and after that my nose got runny.    I am relieved and I slept really well. The next day, I woke up feeling really good. I followed the advice of a friend and I started to do morning stretching exercises. 

I received this 3 piece towel set from a friend. It is my favorite rilakuma character and I am so happy. These will be very useful since it is getting warmer and I am starting to sweat especially in the afternoon.

My hemorrhages keep getting better and it is starting to fade! But there are spider veins / varicose veins. I think it is scary to see, but it doesn`t hurt. The doctors told me that it is the side effect of the steroids that causes my skin to be weak, and as for women who use steroids, these varicose veins are easy to be developed in the lower extremities.

I had my regular monthly checkup. My statistics are not improving nor getting bad, it was almost the same as last month. But the DNA that indicated the activity of the lupus is somewhat getting higher and it is not good, but still manageable. I got my monthly IV of Benlysta (medication for lupus) and bonviva (to prevent osteoporosis). I complained to mama doctor that my edema is not getting better and there was a week that I couldn`t fit my feet in my shoes. I had to use slippers and it was hard for me to walk because the bottom of my toes was swelling. Mama doctor was thinking about what medicine to adjust. Thinking about the side effects, she is afraid to increase the dosage of the main lupus medicines ( Cellcept and Prograf) or to increase steroids. She decided to increase another 2.5mg of steroids and additional furosemide (to make urination easier) to make the edema go away.

I got this gift card from the hospital as a thank you gift for participating in a survey application for medicine. I took the trial 3 months and at the end, they asked me to answer an evaluation sheet.

I wasn`t able to pay my hospital bills and my medicines because I have to make a correction on my insurance since I got company insurance last February. So I just signed a promissory note in the hospital stating that I will pay my bills in the event that my new insurance papers arrive. I went to the City hall to file for the amendments it was quick and they also reimbursed me for the overpayment I made since February. It was very quick and the staffs are very nice.

On my way home, I went to buy this bread. It was famous and the customers who line up to buy this bread was long. The store has a set time for the selling of the brad. They sell it hot and fresh from the oven. The price is 3 times than normal bread. But it was worth it because it is very delicious and it is good for the body because of the ingredients that they use.

The next day I woke up, I noticed a hemorrhage from the IV that I received. Well, no wonder. At the last 15 minutes of my IV, it was hurting, I just tolerated the pain, because I don`t want the IV to be reattached. I think this will took weeks to fade.

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, pain killer + intestinal medicine, furosemide (to make urination easier) and additional medicine for infection every Monday only. 

 

Noon: furosemide (to make urination easier).
x

☀ 

🌃Evening: 7.5mg of Predonine, 2 capsules of Prograf  + 0.5 capsule and 2 capsules of Cellcept, anti-cholesterol medicine, f 1 tablet of a blood pressure medicine, pain killer + intestinal medicine, and sleeping pills #1 & #2.

April 14-20,2019

April 18, in line of work, I and my colleagues went to an exhibit. It features products and services used for caregiving. I found some stuff that is useful for me, like lotion that is good for moisturizing and also eases the itching. Recently, the swelling in my body is getting bigger than my skin is stretching and drying that is why it is itching. 

I was trying to cook. When I was cutting the carrots, due to my hands are swollen, I cannot put any strength and I dropped the knife then it fell to my right toe and I got a cut. It bled for about 30 minutes. 

Mama doctor said that if it season gets warmer maybe I will feel better. But I don’t think that is the case. Maybe now the season is changing that my nose is running and I feel that I have a fever at night. But when I wake up, I can feel that I sweated so I think that my fever (if ever there was) was healed.

I also noticed recently that whenever the 4-hour effect of the sleeping pills has worn off, I wake up to go to the toilet every after an hour until I fully wake up at around 7 am. Compared from months before, even though the sleeping pills were still in effect I am waking up to go to the toilet. I think it is getting better. 

My medicine is still at:

🌅Morning: 7.5mg of Predonine, 2 capsules of Cellcept, anti-osteoporosis, half of blood pressure medicine, medicine for uric acid, intestinal medicine, Plaquenil, pain killer + intestinal medicine and additional medicine for infection every Monday only. Additional furosemide (to make urination easier).

🌃Evening: 7.5mg of Predonine, 2 capsules of Prograf  + 0.5 capsule and 2 capsules of Cellcept, anti-cholesterol medicine, f 1 tablet of a blood pressure medicine, pain killer + intestinal medicine, and sleeping pills #1 & #2.

March 31 – April 6, 2019

It really feels like spring now. The cherry blossoms are in full bloom. As a part of my job, we need to take the children out for walks. So we decided to go to the parks for 花見「はなみ」.

And if it is hanami, it is like a picnic, and it is a must to eat だんご　dango. It is made from glutinous rice then covered with crush dried soybeans.

I am so happy, I got the chocolates I ordered online. It is bite-sized chocolate with different flavors. I can eat these since I have no problem with my blood sugar level.

This week I am feeling good even if there is edema in my feet. It is still manageable and I can still walk. Maybe because the weather is getting hot, I can`t feel so much muscle pain.

My medicine is still at:

🌅Morning: 7.5mg of Predonine, 2 capsules of Cellcept, anti-osteoporosis, half of blood pressure medicine, medicine for uric acid, intestinal medicine, Plaquenil, pain killer + intestinal medicine and additional medicine for infection every Monday only. Additional furosemide (to make urination easier).

x
x

🌃Evening: 7.5mg of Predonine, 2 capsules of Prograf  + 0.5 capsule and 2 capsules of Cellcept, anti-cholesterol medicine, f 1 tablet of a blood pressure medicine, pain killer + intestinal medicine, and sleeping pills #1 & #2.

March 24-30, 2019

I got a gift from my co-worker; she said that it is a post-white day gift. She said it was late because she only got her day off and she went home to her parent’s house in Kobe so she bought me these almond chocolates.

It was the last day of a child that we are taking care off. He graduated junior high school and he will enter high school. Since his new school is far, he cannot go to our day service anymore, so as his last day, I and my Indian co-worker baked these mini cupcakes and throw a party for him.

While having a party for him, I stepped on the cushion and fell. I broke my lips. It hurt. It was a good thing that my co-worker who is a nurse was also on shift with me and she checked my body. She said it was okay., but she was worried about any broken bone. Due to steroids, my bones are weak and prone to breaking. But my body landed on the cushion so I think it will be okay.

March 29, I and my boss went to the immigration office for my visa extension. Since my visa is valid up to this May 18 only, we filed for the extension. I only submitted the visa extension application form and my passport. And the immigration officer told me that if ever there will be any documents needed they will contact me through postcard (hagaki). So I have to wait, I think there will be plenty of time. But I am just worried since Japan will open hiring for foreign workers, the visa might take a while.

This week, I have edema on my feet. I noticed a sudden increase in my weight. But I think it is manageable since I can urinate well.

My medicine is still at:

🌅Morning: 7.5mg of Predonine, 2 capsules of Cellcept, anti-osteoporosis, half of blood pressure medicine, medicine for uric acid, intestinal medicine, Plaquenil, pain killer + intestinal medicine and additional medicine for infection every Monday only. Additional furosemide (to make urination easier).
x

🌜Evening: 7.5mg of Predonine, 2 capsules of Prograf  + 0.5 capsule and 2 capsules of Cellcept, anti-cholesterol medicine, f 1 tablet of a blood pressure medicine, pain killer + intestinal medicine, and sleeping pills #1 & #2.