Little things help in big ways..

I have stated before that I have numerous health conditions. One being Homogeneous Factor V Lieden, and Primary Progressive Multiple Sclerosis. I also have Lupus and Fibromyalgia. Basically, I’m a pretty tough chic and the only thing that can whoop my ass is myself. I know, not funny. I tried. I also like to claim that I that I am a super hero because, I am a mutant but people don’t find that funny either.

Look, I am technically “disabled” or “handicapped” or whatever status you want to put me as. I’m still me. It’s just now when I say I don’t remember when I’m talking mid sentence, understand I really don’t. This used to make my husband mad, because he thought I was being a pain, and I didn’t understand why it was happening, now we do. It may take a minute for my sarcasm to catch up. I also questioned my own intelligence a lot over the last year, for various reasons, and the more I learn about my MS, the more I understand that it’s been showing us signs, we just didn’t know it. Again, I’m still me. I’m still a PITA, some days my brain or body may work slower or not at all. I feel horrible when my friends need me and they feel bad for coming to me. Please come to me. I miss you! I hate being avoided and being the girl with issues and out of the know of what’s really going on in your lives because you don’t want to burden me. Please burden me. I know that sounds terrible. Hell, if that sounds bad, this will sound worse, but it makes me feel better knowing you have issues too. My heart hurts knowing that a few friends have been avoiding me because some “junk” has been going on in their lives, and they feel like they need to censor me from it. Just don’t. You have my permission to vomit the tears and spew the junk anytime you may need.

Today was a big day for me. I got my AFO. (ankle-foot-orthosis) The thing has done wonders for my foot drop. I still have issues because of my hip flexor muscles and lack of muscles in that leg, but the AFO gives me a new hope. I need to relearn balance, and strengthen muscles which physical therapy will help with that.

Along my journey, many things have been assisting me to make my life easier, and I thought I would share some of those items. My cane and wheelchair are very much-needed and helpful items, but other things are just as important. I don’t need them as much anymore, as I am getting stronger, but I will still need them from time to time.

Picture below is my “cheese block.” Its a foam block that I am supposed to squeeze when I am watching TV, driving in the car, or doing anything mundane to build strength up in my hand. It looks rather simple, but the task is quite challenging. Think of it as power lifting for the body builder except this is power squeezing for the mini-mite. My brain has a hard time getting my hand to listen sometimes. The stores are now carrying this new fad of squishy foam items that have pretty cool designs. I think I may invest in a few of them to keep around the house, in the car and even one in my purse so that I don’t have to remember to bring the cheese block with me. Also, cute designs may encourage me to use it a bit more. I hear they have a Starbucks coffee cup one.

This is my night brace. My hand still likes to curl up into a tight ball and it makes it harder to use. I am supposed to wear this at night, and at times that my hand starts curling bad. I had a plastic one originally that was really painful, because it had my fingers straight and it also spread them super far apart.  I thought it was going to tear the webbing in my fingers. This one is much more comfortable, and because of the shape, if I need to wear it outside of bedtime, it isn’t so obnoxious looking either. It has a nice little cushion that goes between each finger and is quite comfortable.  img_4068.jpg

Compression gloves. These help bring oxygen to the muscles in my hands and my wrist and help remove the toxins. That’s what I was told anyways. When I am not wearing my night brace, I am wearing my compression gloves, and these actually apply enough resistance to help keep my hand from baling up, which keeps my hand in a more relaxed position. I still don’t have a lot of use through my fingers, but with the position they are in, I have more ability to use them through say pushing my hair back.

This bad boy is my AFO! Without this amazing thing, my leg just kind of drags and slides behind me. With it, I walk almost normal. I am still learning balance through physical therapy, but this thing is a gem, and the most beneficial to my independence. After a long day in my AFO, my leg and foot is really sore, and I get some bruising because of how tight my shoes have to be. I also have to wear compression socks because of having homogenous Factor v Lieden.img_4065.jpg

I do a lot of physical and occupational therapy. It sucks and hurts, but it helps me to live the best life I can. I also have a very restricted diet. I am on 9 different medications and need to have a medical id bracelet. In time, I may need more devices to help me, and I may need less. It all just depends on the season I am in with my MS.

The diet. Oh, the diet, sucks, and that’s an understatement. I have not seen results, but in all fairness I have not followed it to the full specifications yet. I’m kinda working myself into the full effect. It’s super restrictive, but many MS patients have found success with it along with stress modification, good sleep schedule and some electrical muscular thing. Basically, my diet is no gluten, casein, dairy, legumes, sugar, nuts, bad oils, limit sodium. It’s high in veggies fruit and meat.

In order to achieve our goals we may need some things to help along the way. These are my helpers.

  • Rambling Ceejay
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