I Need My Grandma…

Uggg!!! This is one of those times that I REALLY need my Grandma!!!

My Grandma passed away May 13, 2010. 

She had somewhat turned into my mom also (since my mom passed away when I was 19). Grandma and I could talk about ANYTHING! One of the many types of conversations that we had the last few years were the ones after I got medical test results. By the time we were done talking, I was ready to face whatever issue was in front of me.

I could tell her completely how I felt and not feel “stupid” if I found myself stuck on something that really was small compared to whatever else was happening. She helped me focus on what I can change and be OK with anything that couldn’t really be controlled. I know to give it all to God, but she often helped me give it over to Him more completely and much sooner.

We didn’t brush over something or deny it. We experienced whatever was going on completely and together. This is important, because I firmly believe that if you are in denial, it WILL come out eventually. Might as well take it as it comes. Life is more joyful that way.

I haven’t completely been diagnosed yet. For quite awhile, they thought that I had Charcott-Marie Tooth Disease (a genetic neuropathy). This is kind of a step-sister to Muscular Dystrophy (MD). Just in the last month or two, my neurologist has changed his mind and now believes that I may actually have Small Nerve Fiber Neuropathy. He is still testing.

Some of my symptoms are as follows. My feet are always numb (and often my fingers are too nowadays). It feels like when a limb is just starting to have feeling again – you know, the painful part…ug! When I can feel something in my feet, it is pain. Shooting pain often goes down my legs and into my feet. If I do “too much” in a day, the shooting pain is much worse and I usually lose the ability to walk correctly or pick up something small. I have lost some muscle control throughout my body. If I have done “too much”, my body basically stiffens up like arthritis in my muscles or something. I also have the fibromyalgia pressure points, but not fibromyalgia. My brain and my body don’t always speak the same language. My brain could be saying to my leg to lift up and unless I move it with my hands, it may not get there. Later, it all may work together correctly. My hands often shake uncontrollably and on bad days they sometimes seem quite useless. You should see my handwriting! It used to be really nice and neat…not anymore.

One of my main symptoms is the inability to stand with my eyes closed or in the dark. If I am not holding onto something, I will go down. I often try to fall in daylight, too. I do not get dizzy or anything. I just suddenly fall. I think that I often appear to be drunk or something. I stagger around as I try to keep from falling. I have been getting a lot of bruises lately, because of this. I cannot always judge things correctly and often just run into the edge of a wall.

Anyway, today I had a second type of swallowing test. This one also covers solids… which is my main issue. I have a lot of trouble getting solids from the back of my mouth and down my pipes unless each bite is followed by enough liquid. This has been happening very often for several months.

Well…it turns out that this too is related to WHATEVER I have. My tongue acts like it doesn’t have any strength to get any solids into the correct “pipe”. As I work at it, the food basically seems to just fall down instead of being “shot” into the correct place.

After the specialist explained it all to me, she said that because I am so young (ya right…lol) she doesn’t really want to restrict me to an all liquid diet. (Thank you very much!) To keep from choking or aspirating, she taught me a trick of head placement to use when swallowing. She also said to try to limit anything that is dry, falls apart, or binds together…….OK???? What is left? She recommended more things like yogurt, pudding, etc……hmmm…..one problem: I’m really allergic to dairy…

See? I focus on the smaller stuff too much. I always try to remind myself that there are many people out there that have a lot bigger problems than me. I have A LOT to be thankful for! God has blessed me and my family with many things. It is all about where and who you are focused on. My Grandma always reminded me of things like that. I really miss her already.

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Update: I have since been diagnosed with Early On-set Parkinson’s. There is evidently another degenerative brain issue I have too, but we are supposed to address that later this year by going to another specialist in San Francisco. (I live in the Reno area.) I am doing pretty good dealing with my Parkinson’s now, but I did go through a long period of on and off depression. But as the older man on Night Court used to say, “…but I’m doing MUCH better now…” 😉

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