Some of the latest dolls and clothes:
So, here’s the deal. A few days ago I decided to make monkey bread, you know, cut up some biscuits, toss in melted butter, roll in cinnamon sugar, load in pan and bake. So simple to do. Such a mess to clean up when it goes wrong! Didn’t have a problem putting it all together and getting it in the oven to bake. Getting it out of the oven was when it all hit the fan. At least I wished it had hit a fan rather than hitting my hand, my jeans, my socks, and even worse, the floor!
I am mostly to blame for it all, taking it out of the oven with one hand and then trying to balance it all with the other. I knew it was going as soon as the pan cleared the oven. Reached out with my uncovered left hand and felt a fast sear of pain as the pan tipped, covering the left hand with melted butter, cinnamon sugar, and pieces of biscuit before hitting the floor. Two seconds of searing pain and then nothing. I knew though to get the hand under cold water asap, and I held it there for a long time, not even noticing my jeans were covered with the same mess until later. As soon as all the gunk was off the hand I cut a spike off my aloe vera plant and squeezed the juice on the burned area, topped it with sterile gauze and held it on with an ace bandage that I kept in the freezer for things like this. Ya see, it’s not the first time I have burned the same hand, usually forgetting I should grab a potholder before grabbing a pot that is coming off the burner. Not that I’m getting old or anything, just using my head to hold my hat on instead of using the brain.
Funny thing about having MS. It causes the myelin around the brain cells to die, keeping the nerve receptors from letting the brain know it should be sending out signals that protect people from injuring themselves and being unaware that it is serious. Thus a few seconds of pain that is so reduced in intensity that I have to take care of it immediately before I forget something is injured. On the one hand, I don’t hurt physically as much as others with normal brains. On the other hand I have several injuries that I don’t even know about because I don’t feel them. This can lead to infection of the wound, and when it gets serious I DO feel pain. Still not as intense as it used to be before the myelin was gone, but I could live in a bubble and still manage to get hurt. It has kept me from getting tetanus shots when I probably needed them, but it has also allowed me to continue what I’m doing until forced to stop by the fatigue, another of the fun things about MS.
Fatigue! My worst enemy! The source of years of being labeled by family and friends, all of whom have labeled me lazy, no good, not much of a woman: Hurtful things when only I knew there was nothing left inside to work with. I knew better but had never heard of MS at that time. No one in this area had heard of MS. There was only one time I heard about it — when Annette Funicello told her story of the battle she fought with it. I was in my 50’s before I knew I had it. An “orphan” disease, incurable, still nothing at that time to fight it. It’s still an orphan disease with no cure, but now there are some medications that can help control the symptoms. I’m allergic to them all. Lucky, huh? The fatigue was finally explained, as were the debilitating headaches that sent me to bed for weeks at a time, as well as the clumsiness and the falling on my face so often. And still, 67 years after the symptoms began, there are still the labels attached to me. And there are still people who think I’m lazy. My mom never believed the diagnosis to her dying day and some family members doubt the problem exists. I stopped driving a car when my vision became so bad that I almost caused a wreck because I didn’t see the oncoming car as I pulled out in front of it.
Yeah, vision! Blindness, in my case it comes and goes. I’ve been totally blind for as long as three days, while some folks have been blinded for life. Some days I have perfect vision in both eyes, most days I have been able to see well with one eye only if I shut the other one.
There are thousands of people in the world living with this disease. And yet it is still an orphan disease, mainly ignored by the public. We have two awareness months every year — MARCH AND OCTOBER!!! But MS is ignored both of those months, overshadowed by breast cancer, a disease that strikes so many, including my sister, but has protocols to fight it into submission and remission. MS, never mentioned in ads during those months, seldom the recipient of donations to find a cure, is ignored. MS actually is more prevalent than breast cancer in some areas, yet is still ignored. I guess we live longer so it doesn’t matter to many that our lives are ripped apart because of it. Few people even know about it. If it comes down to it, there are people living miserable lives not knowing they even have the disease. My symptoms began when I was eleven years old. I was diagnosed when in my 50’s.
No two people have the exact symptoms, so it’s not easy to diagnose. I think I would be correct in saying that a lot of us are labeled “hypochondriac:” because MS symptoms are diverse, imitating other diseases, seldom even considered by doctors inundated by true hypochondriacs who take up their time and wear out their patience when there are so many who really need their help.
Okay, no more whining. It’s a sunny day and I’m going to grab my power chair, winter coat and a blanket for my legs and get outside for some fresh air, or as much as can be breathed in by the facemask. With no immune system of my own and a working sinus infection going on I sure don’t need to be around people who might have something I really don’t want to share with them. We have a lot of them in this building!