Akira's Life with Polymyositis

Sorry if my grammar is not good. I’m not fluent in English.

I’m Akira 23 years old and lives in Japan. This is my story.

Last year I took a leave from my work at night because my nape (back of my neck) is acting out and well I’m stress with my work too.

June of last year I started to feel kind of worse I’m already feeling pain with my body this past few years but didn’t think any of it thought it just being overworked or lazy. But one day I woke up and I can’t move my hands. My mom got scared and brought me to a massage therapy and the therapist there look at me they don’t know what’s wrong too they just thought it because of my problem with my nape and because my kind of work.

When we got home that day my mom told me that the head therapist looks worried. Fortunately I started feeling a little better again and started working for a new job. Just two days the pain comes back again that’s when I decide to go to the hospital. The hospital thought its somewhat related to the condition I have on my nape or my bones. The doctor ask me to take a MRI sadly for me I waited a month to have my MRI. While waiting I got worse.

I have trouble sitting and standing up, walking, riding my bike, losing my appetite and even having trouble dressing myself especially putting my underwear and shorts. After I had my MRI I need to wait a month again for result. Waiting is a pain that’s saying a lot since some people says I’m a patient person. It’s hard waiting not knowing whats happening to me. Besides having trouble moving I’m also losing weight. Before I got sick I weigh 85 kg or more and before I get the results of my MRI I think I’m down to 70kg or something. When that day finally comes I bought my dad with me since I’m not fluent in Japanese yet. The doctor said that’s there’s no problem with my MRI, all good and all. No pain medication given (considering I’m in a lot of pain and can’t move properly that time)no follow up to find out what’s wrong with me the doctor didn’t even give me my blood test results that’s weird considering here in Japan they give you the paper of your blood results.

So we came home that day and the next few days I will always ask my dad for salonpas or pain meditation. My dad decides to bring me to his bone doctor (not sure if it’s the correct word for it) the pain on my knee is too much even he said that there’s no problem maybe I should lose some weight. November when my dad told me that will see his other doctor again that knows about autoimmune since my dad has arthritis. My dad thinks I have arthritis or something like that. We went to the doctor took some blood think we waited for about a week or two for the results but this time my dad doctors already said to us that he suspects it’s an autoimmune disease and advise me to not get a flu.(it’s already winter at that time so getting a flu is easy) When the blood results came back surprise surprise he found something. He said to call the college hospital who have doctors studying autoimmune diseases and make an appointment long story short my dad made an appointment to determine what autoimmune I have and to get the treatment.

While waiting for my appointment which is December 7 I got worst more. 1 week I think before that I fall on my bike while getting off it which got me in an emergency room nothing bad just hit my head on a concrete no stitches needed but I think I have a fever of 38 that day.. December 7 came and we went to the hospital, while walking on the main entrance of the hospital I trip and hit my head again need to go to the emergency again. We waited for a few hours until we’re called (appointments really don’t work at hospitals) we talk to the doctor about what happening even visiting the emergency room twice for a month losing hair etc. The doctor said I need to take blood and urine test. Before that my dad asks the doctor if he can give me a month worth of medicine because I already have a ticket to go to the Philippines on December 13 for a month. Took my blood and urine waited again. When we got called again I’m not even fully sitting down when the doctor said I need to be confine. My blood results came back I think I got 44000 CK. To say I’m speechless would be understatement even my dad is speechless. The doctor said I need to be check in the next day and I shouldn’t try to go home to the Philippines like plan because my condition there is expensive and I’m not a Filipino citizen anymore so it will be more expensive.

The next day we arrived late at the hospital since my dad needs to fix my insurance at the city hall. My nurse actually said she got scared that I wouldn’t show up. I got settled in. The next day I think when the tests started. December 9th when the doctor who’s assign to me (the doctor who lock me up and him are different people) came to my room and asked me if I have a tattoo, I said no If I have a boyfriend I said no again or if I recently got blood transfusion I said no again and ask him why. Since I’m not fluent in Japanese I didn’t understand him at first until he google translated it in English and told me my blood results came back positive for Hepatitis B. For the 2nd time that week I’m surprised and scared since he said he’s going to talk to my parents and well I don’t think you would want your parents finding out you’re not a virgin anymore.

To anyone who doesn’t know Hepatitis B can be transmitted thru blood to blood, expose to an infected needle or intercourse. I’ve done some test again and they decide for me to have a muscle biopsy. I done the biopsy and while waiting for that results my doctor told me that the Hepatitis doctor need to talk to my dad. We had the meeting and the doctor said that they can’t start giving me treatment for my autoimmune disease if they don’t treat my HBV first, the doctor actually said that because for the Hepatitis my autoimmune got worse. So my dad said ok and talk about the do’s and don’ts of the medicine and side effects of it and to fix the insurance for it cause Hepatitis medicine is not cheap. Late of December I started my Hepatitis B medicine.

On January 5th I started 60mg of prednisone. No sweets allowed or other snacks. One day I asks my doctor if I can rehab since I’m having trouble moving and he said he will ask the rehab station. He came back to me and told me that the rehab said that I’m young I should walk by myself lol. Anyways a few days after that I got called again at Rehab and a doctor talk to me and decides that I really need it. I started my rehab the first day I started my therapist said the starting from below my stomach to my feet is weak, he even ask if my doctor is there that day. That afternoon my doctor came to my room and told me that he’s adding the dosage of my bone medicine before I only drink it in the morning now lunch and dinner. That’s one of the first side effect I got from Prednisone besides gaining appetite. And for some reason I’m always low blood which worried my therapist and nurses.

Rehab is kind of hard for me since I now have a limit, it’s hard since you’re trying to get your life back. And during that time my hands started to shake. On a good note I’m not really sure when but one day I can open bottles again before I can without the help of our kitchen scissors. I can’t sit on the floor yet but that’s an achievement. Every Tuesday a group of doctors and students will visit us and asks how we’re doing. For the first few weeks after I started taking Prednisone my hands started feeling better its getting back to normal slowly but my legs not so much. I even complain it with my therapist that when I walk my legs are heavy. I nickname is actually being death when it’s tired. Since it’s hard to explain how my legs feel harder even in Japanese I just said “ashi shinda”(means my legs are death)and my doctor understands it. The doctor the one who lock me up is actually the leader than always visits us every Tuesday told me that my legs will take long time to recover and he also advise me to quit my job since it’s a tiring job. I was supposed to stay at the hospital for 3 months but since my blood levels is doing good I only stayed for 2 months. February 20 when I got out of the hospital. Lots of do and don’ts. Since I got out I had a food fiesta and stayed at the toilet for a few hours.

Akira Mizuochi

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