As I get out and about more, it is so nice to hear how my friends are keeping up with my blog. It allows them to know whats going on with me, react to me accordingly and let me talk about other more upbeat things than my medical condition. I am ultimately fascinated and proud to hear that the blog is really helping people, in ways I never even ive never even imagined. Its helping Nurses understand the patients side, rather than just the medical side. Its helping family understand what other family members are actually going through. Its helping people be more appreciative and thankful of their lives. Almost all that I had hoped for with the blog. There are also people who have not heard about whats gone on and instead of talking forever about it, I refer them to the blog. So, if its your first time reading, Ive documented my journey along the way. If you want, start at the beginning and work your way up. Hopefully you will get something out of it!
As many of you know, the weather has been cold here the past few days. Cold enough for me to wear my chinchilla slippers....I know what you are thinking, I'm not a huge advocate of wearing animals either, but they were a gift from my Grammie. One of the symptoms of MS is cold feet. So, the first time I arrived home from the hospital, my Grammie called and asked if I could use slippers. I envisioned the LL Bean down booties that my aunt got me for college. So, I told her yes. My feet were freezing since I got diagnosed. Well, when she came up to visit and give me my slippers, they weren't simple LL Bean down booties, they were chinchilla lined slippers. Obviously VERY nice slippers. She was so proud at how soft and comfortable they would be. Unfortunately, I had pins and needles sensation from my neck down to my toes. So, everything, even something as soft as chinchilla, felt gritty and rough. Even to my hands they did not feel soft. I wore them though, and they were extremely warm and actually stopped my legs from twitching due to them being cold.
I slowly over the next 4 weeks got normal sensation back in my body. Feet first, then hands, then torso. By then it was June and entirely too warm to wear chinchilla slippers. Well, the other night, when I wanted to sit out on the deck and enjoy the chilly evening, I grabbed my chinchilla slippers. Oh my goodness! For the first time I could feel the softness on my feet and between my toes. It was like heaven. I'm hoping one day in the future to have one of these revelations when it comes to feeling on the side of my face, or even my vision. I cant wait!
If any of you are on my FB page, you would have heard I can legally begin driving (I also have a FB page specifically for my MS blogs: https://www.facebook.com/MyBeautifulLifeWithMultipleSclerosis?ref=hl). So, I have been getting short driving trips in without the kids. Regular driving feels totally natural. Its the backing into spaces and depth perception that I need some more practice on. I'm an overly cautious driver anyway. So, its just a matter of time and practice. I would like to get to the point now where I just drive locally and during the day. I would like to drive the 2 miles to the beach to bring the kids or drop ivory off at camp. I would like to be able to drive to school, church, Post Office... Just in town. That would be huge!
Most household items I can order online and they pretty much arrive the next day. I use soap.com or vine.com. Shipping is free too. As far as groceries, I still depend on others, or accompany Al and the kids. He watches over the kids and I cling to the side of the cart to keep my balance. It works out pretty well. I'm hoping to get farther along with the balance. Uneven ground is still difficult. When I take the kids to the beach (with my parents or Al of course) I feel like people think I'm drunk. I stagger pretty good on grass and sand. That's when my service dog would come in handy. If you haven't been on the site, check it out: http://ecad1.org/default.htm. Look under videos and Good Day New York. It has a great clip on how these dogs can aide people with MS.
I do many balance exercises with my Physical Therapist and he makes sure to tell me what an incredible job I'm doing.....as I'm stumbling all over the floor trying to catch my balance. Not like it used to be. I have to remind myself that improvement is slow, but I'm just not a patient person. Especially from someone who has been so balanced and flexible and athletic all their life. I have faith I will get there and there will be one day that people look at me and don't know anything is wrong.
I had my first session with my speech therapist the other day. Its amazing how things that come natural to people from the day they are born don't come natural to me anymore, that I have to work on things such as swallowing and breathing while I speak. The toughest exercise she gave me, and try this, is to stick your tongue out, bite it slightly and with it out, try swallowing. It isn't easy, but the only exercise to strengthen where your tongue attaches to your throat. All the stuff I'm learning. LOL.
I am due for my next Tysabri infusion on Monday. I cant believe its been 4 weeks already. I also cant believe I have been symptom free. After getting hit so hard and so many times by these attacks, I am thankful, yet weary, to have reprieve from them. Its nice to see progress, to walk down stairs carrying laundry(on my feet, not my butt). To carry my kids to bed. To make dinner and clean up after too. All the things I saw as "chores".
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