My muscles are atrophying to the point I am becoming hunched back. I can no longer stand up straight. This makes my shoulders and neck ache constantly.
I can no longer talk. I can't answer the phone, because you wouldn't understand me. Today we had an appointment with the Speech clinic and I now have a mountable computer on order that can be calibrated to read my eyes for typing! How cool is that?
My left arm is dead weight and swollen, but you already knew that. Now my right arm is almost gone and my right hand still works, for the most part, but my right hand is very weak. I can't really write my name anymore! Here it is Christmastime and I can't wrap or unwrap the presents. But guess what? It gave Ashlynn, my 10 year old granddaughter the opportunity to practice wrapping, and she did a great job. Thanks to everyone who has helped me wrap my presents!
My legs still work, sort of. I have to be helped into a standing position from a sitting position. Yep, it means I can't go potty alone anymore, I need some to pull down my pants, pull me from the toilet after my business is done and then pull my pants up again. sounds invasive and it is!The good news is that I have one of those fancy electric wheelchairs on order and it should be here just before Christmas! Watch out world, here comes Hot Grma Silly Caroline, get out of my way!
As for food, I still try to take a few bites of food, but I am getting most of my nourishment through my feeding tube. The good news here is that I have always considered eating a waste of time! Don't get me wrong, I like good food, it's just my motto has always been "I eat to live, not live to eat"
The only really scary part for me is the ability to breathe. At my 1st appointment at the ALS clinic they tested my breathing and I was at 106%. After my feeding tube went in, I was at 59%. Now I am guessing I'm about at 40%. Since the Dr. is on vacation until Dec 20, I can't have it tested again until then. This means my diaphragm is now affected. Meanwhile they suggest I keep my Bi-Pap machine on at all times. Can you imagine sitting around all day and all night hooked up to a machine with a pilot mask attached to your face, smashing the bridge of your nose as it keeps slipping down on my face, with a harness going around your head holding it in place??? I can't even unhook the strap anymore to free myself when I get an itchy nose, therefore I feel like a caged animal.
(A visual of her mask)
I am so sorry you are going through such a trialling experience. You and Larry are both in our prayers daily, and will continue to be. We love you both so much. You are such an inspiring, strong woman, I want to be like you when I grow up!!
ReplyDeleteAnd as weird as it is to actually say this, I agree with you...I would be much more scared of being a living vegetable than Heaven. Heaven is absolutely nothing to be scared of, and if you don't get in, there is absolutely zero hope for the rest of us!
I have learned so much for you these past few months, and for that I thank you. Love you Aunt Caroline!!
Thinking of you everyday! ((Hugs)) Thanks for sharing your positive attitude even with everything happening to you. It is a reminder to be very grateful for what I have. Judy
ReplyDeleteHey Caroline. I'm saddened to read the struggles you are going through yet at the same time so lifted by your attitude and strength. I am a better person just by knowing you.
ReplyDeleteThank you for being a teacher and inspiration as you go through this journey. Keeping you in prayer.
ReplyDeleteYou are truly an inspiration to us all! Each time i read your blog I find myself truly humbled, your ability to stay positive through all of the trials you face makes me realize how much I have to be grateful for and to be positive about. I wish that we lived closer so that we could do something to help you! I will always remember going to the cabin with you all and feeling like I was a part of your family even though it was the first time many of you had ever met me. We will continue to pray for you and your family. When I thought of what you are going through I thought of this scripture that often brings me comfort. I hope that it will do the same for you. “My son, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment; And then, if thou endure it well, God shall exalt thee on high; thou shalt triumph over all thy foes. Thy friends do stand by thee, and they shall hail thee again with warm hearts and friendly hands.” D&C 121:7-9
ReplyDeleteCaroline, you're amazing. I can hear your positive voice through the post! Thinking of you all the time. xxoo
ReplyDeleteIt's one thing to think you would feel this way if the challenge ever came to me but you are living the challenge and doing it your way. Keep inspiring us!
ReplyDeleteWe miss you. Respect your privacy, but you have become such a friend...how are you doing?
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