My Miss Weigle Report No4

Today is March the 1st.  Feb has finished.  We say Feb runs away.  It really did, yes did.

 I have pretty busy days recently.  I usually have small number of patients in winter.  This Feb,wel stopped preparation medicine in our hospital.  A major pharmaceutical company opened a drug shop nearby and my patient would get their medicine there from March.  So I was restless a little last month.  

I promised myself that I would post my hooking project every month so that I would never lose my motivation of hooking.  In last one month, I added two dark flower patterns in peripheral and red ribbon zone. Color is confused in my project and ill-balanced.  I wouldn’t add more color and give it a twist.  But very difficult.  Wooo!

I also enjoy playing organ.  Did I tell you that I got organist as my teacher?  I had a lesson the other day.  The way of playing organ is too different from piano.  I will write it in other chance.  I want to make my organ library in YouTube some day.

I BOUGHT AN ORGAN !!!

    As my doctor said I could start playing the piano again,,,,,,,,,I BOUGHT A CLASSIC ORGAN!!!

http://www.roland.com/products/en/C-200/

I had piano lesson for 8 years when I was a child.  And 2 years for modern electric organ lesson.  Comparing piano and organ, piano play would be the overload for my RA finger and joint.  I chose classic organ because I like its glorious sounds.

    My organ, Roland C-200 has been released just last month, yes grand new.  It has many sound, not only church organ sound but also orchestra sound, piano sound trumpet, cembalo and flute. It has only one layer keyboard but it could be divided into 3 parts, right hand, left hand and pedal.  I want to master this organ and play many beautiful classic music.

   I love playing organ. It doesn’t give me pain on my hands. Good for RA patient.

   Today I play 2 classical music that I used to play when I was a junior high student over 40 years ago.

Inventio 1 BWV 772   Bach

http://www.youtube.com/watch?v=Mel7BwrPC7I

Invwntio 4 BWV 775   Bach

http://youtu.be/2C_MI7FOlE8

Knitting as my rehabilitation

Fortunately I have only slight pain with RA these days.  I finished punch needle chair pad. What’s next?  I found a nice knitted shawl on a magazine.  That design is very popular but I couldn’t find its design drawing anywhere on the net. So bought the magazine and got the drawing at last.  It didn’t seem hard to make the shawl looking the drawing.  It is made by two knitting sticks.  I love knitting.  But I was afraid if knitting would harm my wrists.  All the same, I felt dull aching on my left pinky finger after I kept knitting for an hour.  Left pinky is the very important finger that sends along yarn.  So it might had some load while knitting.  I have made the shawl one fifteenth of whole work yesterday.   It would take time. And taking time is the pleasure for knitters.  I will present it to my mother when she would visit me next month.  It would be a great surprise for her.

My 21st ACTEMRA

I had my 21st ACTEMRA today. The chemotherapy room was so busy and I could finally find my bed to lay myself. There are many beds and reclining chairs separated with curtain in chemo-room. I heard a conversation between a patient and a nurse. She was also having ACTEMRA. She said it was her 9th injection. Mine was 21st. I won!!! She said (I heard) she got up at 6:30 today and often snored during her madication. I know patients get relaxed and get sleepy on getting injection. I dozed of a little too today. Getting chemo therapy every 4 weeks is like dating every month with sweetheart. I can feel ACTEMRA delivered all over my body during having drop infusion of the medicine. I can feel ACTEMRA gurgles into my peripheral joint. It is true.

I have written it is terribly cold these days in my district. Fortunately my arthritis is getting better and better despite of this cold whether. My physical therapist measured cm around my fingers. Almost all numbers of circumference of my finger joints got smaller than last month. GREAT !! There is NO SWELLING! I only feel stiffness on my fingers everyday. I hope this would be disappear in near future.

KEEP WARM and SLEEP ENOUGH!   That’s the point to live good with RA.

A Happy New Year to everyone

We got great New Year’s Day today. We had great wether in spite of terrible weather  forcast.  I want adequate amount of snow. Snow is important for us, trees and other creatures to live on. 

I want to say my new year’s resolution.  I will keep this blog, even it would be my diary not for information to other members.  Keeping up would be something great.  I hope my Rheumatoid Arthritis would be better and better this year too.  I will take care of my self.

 I post photo of my decoration of our entrance.  It contains straws of rice(goodness of fertilty), leaves of pine tree(longevity), golden grand drape(tresure), fans(good luck), red nuts(fertilty), and round shape(good balance, relationship).

I hope we wouldn’t have any war,accident,crisi nor bad news this year.

MTX in my case

Today is the day when I take MTX(Methotrexate) onece a week.  I started it in 8mg two years ago. As I got better, dose of MTX has been reduced to 6mg.  On the peak of my RA, 8mg was not enough and my doctor added steroid.  In Japan we are usually allowed to take 8mg in limit.   If we need more, we have to get ethical committee’s allowing. I’m told its limit has been raised recently.

 I take 4mg in the morning and 2mg at night. I usually feel chilly after I take it. I took bath before dinner today.  Because I felt so cold all my body.  In the bathtub I could grip my hand with slight stiffness.

 Saying about my side effect of MTX, I am lucky I have no serious side effects. But I will keep to check liver function, chest X-ray, kidney function and infection.

My 20th ACTEMRA

Today I finished my ACTEMRA administration with no problem.  This was my 20^th shot. I usually get 480mg of ACTEMRA with 100ml of saline solution by drip infusion every 4 weeks.  We need take time for the first 3 ml of dissolved ACTEMRA and check allergic reaction. If nothing wrong, we raise the rate of infusion and finish it in an hour. I am so happy I’ve never experienced serious reaction.

People say we can get effect of treatment very slowly with ACTEMRA.  And would get effect in 3 months.  But in my case, I got good result on the day when I got my first infusion. I’ve had been suffering from sever pain all over my body before starting the infusion.  I had taken small steps and walked like a penguin. I could never had rolled over in my sleep because of my shoulder pain. So I had found my bed sheet with no ruck every morning. But next morning after my first infusion, I found my sheet got crushed.  I was so surprised to find it.  I could roll over like healthy people. And my doctor was so glad to see my natural walk.  It was only 20 months ago. I feel this 20 months very long .  After my first ACTEMRA there were so many changes, good changes, healing and cure.

(I will write about “ After my first ACTEMRA” next time.)

I place photo of today’s shot of myself getting infusion on reclining chair in my hospital.  I’m sorry I’m not brave enough to put my face.  One of my friends gave me warning about opening my privacy.  We on the glove have many cultures.  Countries are countries all over the world.

Prevent Dementia ?

I started blogging just 3 weeks ago.  I am a Japanese and English is my second language.  I have no English native person around myself. And it is pretty hard to manage this website in English.  Then why do I keep blogging?

It is said there are three ways to prevent dementia.

1: playing game of Go

2: playing golf

3: using foreign language

Go is a traditional Japanese game of grabbing territory in two teams, white and black.

I am not interested in Go and so can’t play.    I used to play golf and do not play at the moment due to RA. So I need to use English. Reading, writing and speaking.  I got many friends on the net who are American and Italian from 12 to 86yrs.  Internet web has brought us revolutional change all over the world.  We can get hot information via internet, not via Japanese book.  

I need to develop my English vocabulary to raise my skill.  I want to express information of Japanese RA therapy and patients with RA.  Also I want to show my fiber products of hooked rug to the world.

Rheumatoid Arthritis Warrior

The other day I found a nice HP, Rheumatoid Arthritis Warrior by Kelly.

http://feeds.feedburner.com/rheumatoidarthritiswarrior

She also has RA and keeps up her HP.  It is huge and there’s much information and RA patients.  I don’t know where I should start reading.  I want to communicate with RA patients all over the world through her site.

Record Book of Physical Condition

Today Mr U sent me a new record book of my physical condition.  He is a medical reprisentative of Chugai Pharmaceutical Co.LTD.  The book is  a special book for patients who take Tocilizumab (ACTEMRA).   I take injection of T0cilizumab every month and I can write my everyday’s condition such as body temperature, pain , respiratory symptom or any other abonomal sign on it.   I wonder if it is used in other countories with the drug.  I got a friend

Kelly who is also fighting with RA.  And I will ask her if they have special record book of  certain company.