Well I need to update, I would love to say all is well and I try REALLY hard to put on my happy face, but I just seem to be getting worse it seems...
I had my first fall a couple weeks ago. The connection telling my brain to pick up and move my right foot seemed to just not make it and down I went. Left a potato sized bruise on the top of my foot when I hit the vacuum on my way down to the floor. It happened so fast I didn't even understand it, but I knew my leg wasn't supposed to do that.
The spider crawling tingling and numbness that used to hang around only my feet have moved up to include my calves now in both my legs as now a daily constant companion.
The stabbing pain behind my eyes was a once in awhile symptom but now seems to have become a regular.
And now the new addition that has crept in lately is the jello legs. A weakness and balance disturbance in my legs, that seems to mirror the sensation of carefully walking across a log to cross a river, as each step needs concentration and focus. Bruises across my arms and legs attest to the fact that I have lost balance and wammed myself into a nearby wall or door.
And as recent as two days ago when making cookies with the kids, I was using a spatula to scoop a cookie up and all of a sudden in my right pinky finger I felt an electric pop, then a burst of spider tingles and finally it went completely numb for about 4 hours.
Someone sitting right next to me wouldn't have a clue that when I go to reach for my fork my hand tremors so bad that it is difficult to pick it up and sometimes I even drop it. It just looks like I overshot it and people drop things all the time.
MS is a very lonely disease and can be extremely depressing as you have no idea what each day will bring and have to thrown on a smile day in and day out. All the while having the greatest fear that all MS patients face, is wondering if this is the morning when you wake up and the numbness and tingling doesn't restore and we become wheelchair bound.
More times than not as I make my way across the soccer field to watch my boys games, and watch all the parents flow to the fields, I think, will one day I have to arrive in a wheelchair?
Or I think as I watch the kids dance around the Christmas tree, wondering will one Christmas in the future will have my sight have left me?
I didn't write this
to be Mrs. Gloom and Doom but to help understand the incredible blessing that Matt and I have prayerfully decided to embark on. This controversial treatment called The Liberation Treatment, has taken the medical community by storm and turned it on it's head. Essentially in a nutshell the theory is they have found a large number of MS patients have blockages in their veins, particular their jugular veins. Which in turn causes a backup of the flow of blood or a reflux back into the brain, which according to their theory may cause these lesions. This isn't a voodoo weirdo stuff. The best way to understand CCSVI in a nutshell is to watch the videos.
Now for the neigh sayers, we have not made this decision lightly. Through prayer and educating ourselves we have decided to fight aggressively in order to have the best quality of life while children are young and before I get any worse.
It is right for us.
And simply only those living with MS torturing their body or watching a loved one live day by day live with this disease would understand why this minimally invasive procedure is truly a blessing if it could help even one of my symptoms
so why wouldn't I try it?
6 comments:
I've heard of that treatment. I'm all for quality of life, especially while the children are young as you said.
And, if you have prayed and feel right, you don't need to have anyone else's permission to do it! Although, you didn't need it anyway. ;)
I'm so sorry you are having to go through this, and your family too. I can't wait to see you again in a few months. I miss you.
We are so anxious about you and so hoping this treatment is liberating. My reading suggests and Dr. Zamboni urges only undergo the procedure in a clinical trial setting. We love you lots.
I think this is amazing! And exciting!!! When are going to have the procedure done? I am praying for you! And I love you tons.
Jenn I hope this treatment would help you with your MS. It was horrible to see you suffer so much. Love Shauna
I think this is the best idea! I am 100% in agreement that you cannot be shy about getting treatment-you go full power and get this done. Do you still have the info I sent you about this? I think they were talking about a place here in Vancouver that is connected. Please please please let me know if there is anything you need whether it be research, money (these things are not cheap!) or anything else you can possibly think of. I love you and I am so sorry that you are going through this. I know that you can get better-you are too strong not to!
I support you a million percent. I think this is great and I hope it works! Love you so much!
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