July 5, 2018 (Thursday)

I woke up at 3:00 am JST to go to the toilet and took sleeping pills #3. I slept for 7 hours. YES! Good sign!

There is a typhoon here. It is so gloomy but I am still hoping for a wonderful day! I still have Edema, my new weight for today is 55.10. I let took out urine samples for the regular Monday and Thursday test here. My blood will be drawn in later’s session.

No breakfast but I have to take my medicines. 3 capsules of Cellcept, medicine for cholesterol and antibacterial medicine, and yes, a new little yellow pill, that is the regular form of the medicine for the intestines given to me by IV. From today I will be taking it orally. It is a good sign. 

Since today will be Blood Dialysis (血漿交換, けっしょうこうかん) day, there will be no Furosemide 20mg, I don’t want to have toilet breaks in between. I took my bath at 9:00 am JST. Took my preparations: IVs of pain reliever, anti-irritation, and anti-vomit medicines. And with this, I am so ready!

10:00 am JST be Blood Dialysis (血漿交換, けっしょうこうかん). I walked going to the facility, but as the session starts I am starting to feel sleepy so I rested for a while. I was lucky to have a little nap, about 10 – 15 minutes only because it was starting to feel cold. My muscles started to tremble little by little. Even though I took anti-vomit, I wanted to vomit, so I started to eat the chocolates. I can feel that there will be no toilet breaks. 20 minutes before the end of the session, my left lower back starts to feel the pain, it's like a stick is being put in, they can’t give me medicines because I already took some earlier, I have to bear with it. And as just the finish buzzer started ringing, there were signs of itching. But it is good that we finished the session within exactly 2 hours, it seems that my body can’t hold more than that. I was lucky that I didn’t have to take the anti-itch steroids again. So it ended well, better than the previous session. Thank God. I was able to greet everybody as I went back to my room.

The reward from my doctor came! 100g rice, Fried chicken with ketchup and cheese and Chinese cabbage on the side (Oh yes! Very special for a hospital food), steamed squash, cabbage salad, 2 slices of oranges and tea. Savior! But I have to take it a little rest because I might vomit if I eat in that instant, I’m afraid.  

2:00 pm JST shots: Prednisone Pulse 30mg (yes!, a lower dosage from today! GOOD SIGN!) took Furosemide 20mg. this is the 10:00 am JST medicine.

This was delivered today. I ordered this online, it is a very cute massager! Just in time to use it. Because my muscles are starting to feel itchiness inside. Everybody said it is so cute!

I’m not feeling well. It seems like I want to vomit, and every time I try to drink water I want to vomit. I can’t drink! I vomited, but my it was like saliva but very foamy. (eeewwww, sorry) as I vomit blood came out from the needle in my neck. I still have to take my shots of Prednisone Pulse 20mg at 4:00 pm JST.

Dinner time: 100g rice, steamed white fish with sweet radish sauce, boiled sweet potatoes, spinach salad, 3 slices of apples, low salt senbei (Japanese rice crackers), and tea. It is a miracle that I can eat, it is just that I can't take in water. I ate in my room very slowly. Time for medicine. And yes another additional new medicine for lupus, 3 capsules of Prograf and as the usual 3 capsules of Cellcept.

Since the blood came out of the needle from my neck, my nurse has it cleaned for me. Can you guess what I am holding in the picture above? No, it is not a mini Japanese flag, it is a blood catching tape. I had IV taken out.

I can’t still seem to calm down. Now I know it’s the steroids! I just took it with only 2 hours difference. The kickback is so strong that I can’t seem to sit or lay down still.  This is so frustrating! I wanted to rest but I can’t. So I went to the Familymart to buy toothpaste and these chocolate energy bars (low in sugar high in protein).

I think that I moved very much from the kickback, know my body is starting to ache especially my lower back I can’t tolerate it to the point I received painkillers. Since my IV was taken out, I have to take the anti pain via direct IV (old style dextros, 1 direct needle) at 9:42 pm JST.

I prayed in silence for the pain to go away and said my thanks.

I took sleeping pills 1 & 2 at around 11:50 pm JST. Hoping that tomorrow as I woke up I will be fine. Good night.