Wednesday, January 16, 2008

diagnosis

I had hoped I could write this in a brief, emotionless paragraph. I managed kind of okay with the emotion but not so well with brevity because I would forget part of a sentence and get confused, find myself writing in circles, unable to copy from sources because when I look up I forget what I was just looking at. I've been trying to write this for days. After I've whittled it down you won't see the circles it. I hope.

Multiple Sclerosis: no fun
Partial Seizures: pretty nifty
Optic Neuritis: I've lost some color vision & have blurry vision as well, which makes me uncertain about every image I post and makes photography pretty difficult.

A nurse came to my house the day before yesterday to teach me how to give myself injections so I could begin treatment with a medication called Rebif for MS. This won't cure it or undo any damage the disease has already done but it will hopefully slow the progression of it and the time between relapses. I will be giving them to myself, three times a week for the rest of my life (or till I can't give them to myself, I guess? I don't know). She said I'd feel pretty miserable for about the first three months of injections. So far I just feel tired.


So that's the diagnosis. This stuff below is from the net and the Rebif pamphlets with pictures of shiny, happy people living comfortably with their disease. Some folks with MS might get a chuckle out of that “comfortably” part. Heh. (Turns out, the "shiny, happy people" pamphlets had the most helpful information.) Darn it, now I've got that song in my head. Well, they were shiny, it was a glossy looking picture. ;-)

Multiple Sclerosis is a neurodegenerative autoimmune disease. Normally, the immune system helps fight viruses and things like bacteria. In an autoimmune disease, something causes the immune system to attack the body itself. With MS, where the body attacks itself is its own nervous system.

The nervous system is made up of nerve cells that send signals to each other. Each cell is covered with a protective coating called myelin. It acts like insulation on an electrical wire, lets these signals pass between nerve cells at high speeds. This is how nerve impulses from our body reach the brain and how the brain sends signals to muscles. Kind of like a relay system. With MS, for some reason, the immune system attacks the myelin sheaths and strips it off. This is called "demyelination." This leads to a breakdown in that signal function which leads to disability.

Multiple Sclerosis is unpredictable and incurable. It's mild in some people and severe in others. It affects no two people alike. You don't know when a relapse will occur, how long it will last, what it will consist of or the amount of damage that will take place during that time, in other words, the outcome of any given relapse.

But nowadays, we are lucky, we can give ourselves these injections and slow the process down. "Don’t worry, be happy…laa….ladadadadadada……….ladadadadadada……….ladadadada"

Try to get that song out of your head, ha!

Oh yeah, the injections and the nurse's warning...so if I don't post it would probably be I'm just feeling something wretched I'm supposed to be feeling so don't worry...be happy :-D

24 comments:

Trée said...

O, thank you for the update. I wish I was there so I could just hug you into next week and the next year. You remain, as always, in my thoughts and prayers and you remain, in my mind, as my dear beautiful soul. Love and hugs and kisses too.

runnerfrog said...

My father is treated now for demyelination, by different reasons ...and my thoughts are with you.

Capt Nemo said...

Hang in there Ollie, you are well loved >:D<

DaveB said...

Ohhhhh....

WE LOVE YOU!!!!

Oliviah said...

Trée, have been one precious nonstop hug since the day I met you. Double back to you those hugs, love and kisses.

Oliviah said...

Oh C., I hope he is doing well and thank you for thinking of me.

Oliviah said...

Nemo................you anchor me.

Oliviah said...

Dave....that was so sweet! Many hugs to you

Janes Insane said...

Hopefully while those shots are delaying the MS effects, they will come up with something that will help even more. Medical science is making such huge advances now, it seems like what used to take 10 years to discover is now done in months.
Bless you for sharing "all of you" with all of us.

Dzeni said...

I'm so sorry to hear about the MS. Kia Kaha (roughly translated means "stay strong"). My thoughts are with you.

Oliviah said...

Thank you Jenni

Oliviah said...

Jane, soon, I hope, lol! Glad to see you drop by. :-)

Autumn Storm said...

Love to you, Oliviah, thoughts and hugs, and more love.

Oliviah said...

Many hugs and kisses to you too dear Autumn.

Agnes Mitchell said...

Hi Olivia, I'm so sorry to hear about the MS. That's another I wish this world would find a cure for. So sorry for the effects and I do hope the shots will help get to some kind of normalcy. I know so many suffering the same.

Much love and hugs to you hon. Wishing you peace and comfort.
Aggie

Oliviah said...

Agnes, you have always been such a sweetheart. I appreciate your warm thoughts.

Deb said...

Oliviah, sending you a huge love-filled bubble of light.

Oliviah said...

Deb...oh how beautiful! I needed that. Thank you very much. :-)

Anonymous said...

Hi...You know what you have has to be one of the worst things a person can suffer with I have heard of. Life is so full of unexpected things. I wish I could take your suffering away and burden it, for you seem so sweet and kind. I want you take to care of youself, keep you chin up, (remember I am going through something similiar), Keep you heart open and KEEP CREATING YOU! :)

Anonymous said...

I love your art image here too! Reminds me of a "Black Hole" in outerspace! NICE!

Oliviah said...

Thank you for the way you care for me, it means so much.

Oliviah said...

Thank you! :-)

Anonymous said...

Dearest Bev, I have been wondering about you for so long. It never occurred to me to take a look at yoor blog. I hope you hang on there. Of all the people I have met, you are one of the most talented and lovely. I do not know what to tell you to make you feel better, but mu heart and prayers are with you. That tunnel you did draw is awesome and the sketches are as well, it is amazing what you can do even going through those treatments. I will keep coming to see how you are doing. Love and hugs, Antonio.

Oliviah said...

Antonio, it means a lot to hear from you, you have always meant so much to me. I haven't forgotten you. I'm glad you thought to look in here so you know that there has been a reason I've been unable to keep up like I would have wanted to. Many hugs to you. xox