Memories of my Dad

I saw my Dad in my 5 year old today.
My Dad loved butter, it was a family joke that he would have a butter sandwich with a little bit of bread. 
McKinley loves butter just like my Dad.  I was making supper and out of the corner of my eye I saw her dip her finger into the butter dish and take a lick. 
That is so something that her Pappa would have done.
I love when something or someone makes me think of the happy memories of my Dad. 

Paperwork

I have never loved filling out paperwork as much as I did today. I have pages of school forms to fill out. I sat in the kitchen and carefully and slowly filled in each of the pages.
Just a few months ago when we registered McKinley at her new school and because I couldn't write the principal filled out the registration.
Today, just two months later I am able to fill out the forms without any help. My writing still isnt where it was, it's closer and my hand is feeling better.

Just then other day I was having a great day and wondered "could it get even better than this?".......IT CAN

I feel GOOD

After a very productive morning of making lasagna and other freezer meals I went for a run. During my run different thoughts were running through my head:

*Today is 7 months since my 'attack'

*I feel healthier and in better shape than I was before I was diagnosed with MS. Maybe this is a wake up call and if I can continue to stay healthy and active I won't ever get attack #2.

*I made the call and have researched a lot on ccsvi and now am anxiously waiting for a call from Dr. Hewitt to get further information on the ccsvi procedure and results in newly diagnosed MS patients, specifically ones with a clinically isolated syndrome like me.

*I feel so good today. Not only because today is my good day, but also because I have chosen not to inject my betaseron tonight. This isn't a rash decision and I have many valid and justified reasons. Tomorrow morning I have to move my Mom to her new apartment. If I inject not only will I be sick with the flu symptoms, my hand and numbness will be worse making me far more useless in the move. I also want to see how much better my hand feels without my injection. Every time I inject my hand and arm get more numb. I am excited to see just how much I can feel tomorrow morning.

I feel good on the inside and out. I am thinking clearly, feeling positive. This is the closest to the old me I have felt in 7 months. Could it get even better than this?

Tolerance levels

Three nights ago I experienced the most painful and intense side effects from my injections. It was so bad I considered a trip to the emergency room in the wee hours of the morning. I like to think I have a high pain tolerance, but this had me in tears.
It was all the regular side effects; jaw and ear ache, headache, muscle cramps and aches, nausea, chills, shakes but easily 10 times worse than any bad night I ever had. Plus I had horrible pain in my hands. It's hard to describe but my hands felt so cold and numb that they were burning hot. The entire day after I still felt terrible and the movement and feeling in my right hand had noticeably decreased since prior to the injection.

I lived through the horrible ordeal, but had anxiety about doing another injection. I called the nurse hoping she could tell me what I did wrong and ensure it didn't happen again. Unfortunately she told me that is the makeup of the inferon based medication and it can randomly cause intense side effects.

I did my injection last night and the side effects are still there but not like the other night. It's funny because this morning I woke up relieved that it was just the regular flu like side effects. Mt tolerance level and acceptance has changed. I'm now more accepting of the side effects I've dealt with for 4 months. Just as I have accepted some of the changes in my life because of the numbness in my right side.
I hate that this disease is changing what I accept as a good day and what I am willing tolerate. I don't want to make anymore compromises.

16 years

"The greatest danger for most of us is not that our aim is too high and we miss it, but that it is too low and we reach it."

I've been studying and researching disease modifying drugs and the CCSVI procedure.  I recently read about a study on the disease modifying drugs that I am currently on.  The study showed that the drugs did not slow down the progression of the disease.  Both groups, those being treated with drugs and those without had an average of 16 years before they required a cane or assistance with mobility. 

16 years?  Technically I have 15 1/2 years left.  I want more than 16 years.  I think about the fact that I will be 53.  More importantly I think about my oldest being 34 abd my youngest being 20.  I dont want to be that Mom (or Grandma)

I have taken up running.  I have a constant motivator...my disease.  Each day that I can still take those steps is a day to be thankful for.  I have also started to consider doing a 5K race.  Im not a fast  runner but I want to be able to say I have tried and accomplished this.  Running keeps me healthy and ahead of my disease.

I now need to start looking seriously at the CCSVI treatment.  I dont want to wait until I am disabled to the point of being unable to walk.  I need to face the fears of having this procedure done.  I also need to face the guilt of spending so much of our families savings in order to have this done.  Logically I know the procedure is invaluable to me and my entire family, but I know I would feel tremendous guilt.

 

Gifts of Memories

I've been focusing on the word of advice in my previous post about living in the moment. 
Life is short.
As a family we have been enjoying some really good moments.  They are small and simple moments, but as a family we are finding such happiness in them.  I love seeing these moments through the eyes of my children.  Hearing my 4 year old loudly exclaim "This is the best day ever."  makes the excitement contagious. 

We are taking ordinary days and turning them into wonderful memories.  This started out as a goal of wanting to give my children experiences and memories, but it has turned into so much more.  It has become a gift of happiness to our entire family. 

In your head

I have MS. Along with this invisible illness I am faced with having to deal with the comments from people who haven't been in my shoes. The ones where they think it's all in my head or that I'm convincing myself to feel these things. They are correct with their comments of it being all in my head. There are lesions in my head that are causing this numbness. Along with the numbness is a lack of coordination. When I want my fingers to move a certain way it doesn't always work that way. I've tried telling myself it's all in my head (otherwise known as living in denial) and when I do that I usually end up hurting myself or breaking something because I am not making this up. I cant ever forget that I have MS because I have a constant reminder with the numbness in my hand.

There is silver lining in these clouds. I continue to get better. It is still slower than I would like but it is at least moving in the right direction. I get excited thinking about the possibility of forgetting that I have MS, if even for a day.

Living in the moment

Life is short

Break the rules

Forgive quickly

Kiss slowly

Love truly

Laugh uncontrollably

And never regret anything that made you smile

In my internet search today on Multiple sclerosis while looking up another symptom of my disease that I am facing, I came across some great words of advice.  It talked about how people diagnosed with MS should live in the moment, live for today. 

In the same day a good friend posted some wise words to remember and live by on his facebook wall.  Instead of being consumed with this disease I am going to remain positive, live, kiss, love, laugh and have no regrets.  

Every once in awhile a day that starts out very negative and full of fear and uncertainty has a way of turning around into a lesson and a little good.