Copaxone

So I was sitting here thinking about what to blog about and all I could come up with was my very boring shot.  I was going to basically copy and paste information on what my shot is and what it is used for. Blah, blah, blah, blah, blah  BORING.  So if you really are interested in that I will just paste the link and you can read that information for yourself.  I mean it is interesting on how theoretically it works and how many people it theoretically have had prolonged there relapse periods for.  People have done amazingly well on Copaxone.  If you like the technical aspect on which cells it works on in the body, it really is fascinating too.

http://www.sharedsolutions.com/

The other day I was so bored, I was looking up celebrities with Multiple Sclerosis.  There are a few, not many.  I guess I was just curious to see if money and power can get you out of being afflicted too, but apparantly not.  Montel Williams, Annette Funnicello, Richard Pryor, Squiggy (from Laverne & Shirley) and Terri Garr oh and one of the Osmond brothers are the ones that I can remember off the top of my head.

I know that Richard Pryor passed away from complications and Annette is pretty much vegetative, everyone else seems to be doing okay.  Hopefully, life is looking up for them.

Well as for me, trying to keep my chin up.  Still increasing the dose weekly on my seizure medication.  Making me dopey, just like one of the seven dwarfs.  I am at 75mg twice daily with a goal of 100mg twice daily, so if my typing is off or goofy or dopey, just have a hearty laugh at my expense, believe me, I plan to revisit these pages later when I have stabilized to do the same thing.

http://youtu.be/kC7NpEISWxU

Inspiration in times of trouble and illness

A very dear friend of mine wrote of an experience she encountered that should be an inspiration to us all, sick or not.  This is her story reprinted with her permission.

"I just wanted to share an incredible story of the love of God I saw in a homeless woman.

I had seen this car off and on in an abandon parking lot for about a month. I had thought of stopping several times but was too busy or afraid I would not know what to say or how to relate to this person.
So tonight I left work late again, feeling sorry for myself for working such long hours for the past month and feeling no so thankful for my life. I told God I was sorry because I know I am bless but still had a bit of a pity party going on inside my head. As I approached where this lady parked I prayed for strength to stop and wisdom to know what to say. God showed me he took care of it all.
So I pull in an park beside this car that looks like it should be in the junk yard that has a big sign HOMELESS. I introduced myself and shook the ladies hand. She apologized for being reluctant to shake my hand and did not want to explain why it was an issue just a ghost from the past. I without even thinking (totally a God thing) sat down next to her car on the pavement sitting Indian style so I could hear her better without the traffic noise. It was so incredible. This woman had the JOY of God in her. She had a radiant smile even when telling me her story. Very into the Bible and God this woman is.
Her story is this: She asked her husband to let God into their lives and he was not a Christian so he divorced her. She has four children and then became ill. The doctors do not know what she has but fear it may be bone cancer. She lost her job because she was ill so much of the time and of course then lost her insurance. She had no money and needed help for her children so she called her ex-husband to see if he could help until she could get back on her feet. Instead he obtained a lawyer and because she could not provide for the children he now has sole custody. He then moved to Pennsylvania (they were from another State) so the kids would not be influence by their mother (primary purpose I feel was to keep her from talking about God). She drove here 4 months ago in her beat up little car to be where she could at least see her children. She eats and sleeps in this car. It has no heat and a cracked windshield. It eats oil like M&Ms.
We talked for 1 1/2 hours but it seemed like only a few minutes. She went on and on about the love of God, the joy we are going to have in Heaven, and how important it is to love one another. One man stopped and had picked tomatoes and cucumbers from his garden for her. She was thrilled and then handed me some, I declined but she insisted that I take some as they would spoil before she could eat them all. Then she shared her favorite recipes with me. She is such an enthusiasticjoyful person.
Another young man with tattoos stopped and gave her some money and kept apologizing that he did not have more for her (I lost my stereotype about tattoos and the people who have them in one second). Another couple stopped just to talk to her. And the third man stopped and listen to her praise God and he gave her $20. She was thrilled because now she had enough money to get her Pennsylvania plates and would not be fined by the police.
I offered to have her come sleep in a warm cozy bed at my house. She declined 1) because she did not know me and explained you learn to be safe and 2) I have a dog and she is deathly allergic to dogs and cats. I was totally humbled by hearing this woman's story and embarrassed that I had been whining about my blessed life. God does teach us humility.

This woman kept praising God for everything. I thought of her circumstances and thought, " I would be a basket case". But her she was singing God's praises. I was whining about my great life and she has nothing and praises God in every sentence and with a smile on her face and a twinkle in her eye. She is such a champion. Wow, I would love to have that kind of love for God. How about you."~~Nancy Rogers

Incredible.  We all have struggles in our lives.  Some of us just know how to pick ourselves up better than others.  A lesson to be learned here.  Nancy is an inspiration in herself and yet she finds inspiration in others, all through the love of God.  My pity party is done for a while.  I lift my troubles back up to the Lord.  I will open my eyes and my heart for all the inspirations that surrounds me.  I have seen them too, just not acknowledged them as I should.

http://youtu.be/jFg_8u87zT0

cruel joke

I am sitting here trying to decide on what MS is.  Is it a disease or just a very cruel joke.  My conclusion leads me to think that it is the latter.  At least for me, every once in a while, it gives me this little glimmer of hope; a little taste of what life used to be.  How I used to dance around when I cleaned the house.  I used to tend to my little flower garden.  How I could window shop for hours.  How I could clean for hours.  Make a nice meal for my family.  Go to the grocery store on my own.  Then just when I think that I am going to be nearly normal again, it all starts slipping away again. 

I start getting clumsy, my coordination isn't quite right, my legs don't cooperate, my words aren't following what my brain is trying to say.  Now my right side of my body is getting all uncoordinated and weak too.  Seizures are back.  New seizure meds making me loopy.  I am overwhelmed and exhausted.  I am tired of taking a shot everyday that makes me feel like getting stung by a bee.  Some days I cry like a child and my poor hubby just doesn't know what to do about it.

Read an article the other day on Annette Funicello and boy that sure didn't lift my spirits any.  She is basically in a vegetative state.  I never want to be to that point.  I pray to God that I never get to that point.  God bless her.  I hope that she is not suffering.

New Study on Cost Effectiveness of MS Therapies : National MS Society

The Disease Modifying Drugs for MS are so expensive. I am on Copaxone and before I used the VA, my monthly copay with insurance was $250. It was outrageous. I can't see how anyone affords this. This is just one of my medications. Here is an article that talks about the cost and effectiveness: New Study on Cost Effectiveness of MS Therapies : National MS Society

Hope Endures

Well, I kind of liked the video I posted last week, so I thought I would do another one today.

This one shows that the right side of my face is not working as it used to.  The muscle symmetry is missing.  It is weird how the nerves cross at the base of the head.  So like me, if you have problems using your left leg and left arm, then it is actually the right side of the brain that is most affected. 

 This is evident by the right side of the face being affected.  Whenever I have any relapses, my right vision is affected along with muscle control on the right side of my face. My left leg starts to drag and my left foot drop becomes more profound.  My left hand loses coordination to the point I can't even tap my fingers together rythmically.

If you close your eyes, hold out your arms, you should be able to touch your nose with each hand with no problem.  I can no longer do that with my left side.  Proprioception is the bodies ability to know where any anatomical part of the body is as well as sensations. 

I made this video of me singing (not great), but if you notice, the right side of my face does not react as the left side does.  It used to have symmetry, so this is not my normal.  Well, I guess it is my new normal.  Anyway, hope it brings you a little joy, probably most likely through laughter :o)