MS and the Month of March

Once again it is MS Awareness month, shared with Breast Cancer Awareness. Breast Cancer has always received the most press during our shared months, but now maybe someone should come up with a ribbon for COVID as well. I’ve heard rumors about cures for breast cancer, I know there are vaccines for COVID, but still there are no cures r vaccines for MS, one of the truly orphan diseases. It gets two months of awareness per year but for those of us living with MS there are no months of respite at times. It just keeps on going and going but not as cute as the Energizer bunny. More reliable than Timex though, it just never stops completely even though it sometimes slows down a bit. At least it used to slow down a bit for me but for the past few years it just keeps on and on with the fatigue getting worse every day.

After saying it doesn’t slow down I have to admit I’ve had a short energy spurt these past couple of days. And true to form when I get an energy spurt I tend to overdo things a bit just to catch up on the things that have fallen by the wayside during the other months. So I’ve been moving furniture lately. One chair has been where my kids placed it 7 or 8 years ago while another one has been in the same place the 22 years I’ve lived here. My lift chair is kinda heavy so I seldom even try to move it but a couple of days ago just decided to give it a nudge from the usual place next to the window where the cold air was getting in. The first little nudge worked so well that I got behind it and gave it a shove, I can now sit there without wearing a fuzzy hat and muffler to keep the cold off my head and shoulders. Now that I have started that I’m going through papers that were stacked behind the chair on some shelves that were too close to get to and getting rid of a lot of trash that way. Looking at some of them makes me wonder why I ever saved them in the first place, and why I kept them in the second place. Recipes for dishes I have never tried because each time I came across one that looked good I wanted to try it. Just never got around to actually doing that for most of them and the ones i have tried and liked are now in recipe binders. Ya know, big stacks of paper get kinda heavy after a while and I think I’ve personally filled the big dumpster a couple of times without even trying. And always shaking my head at the waste of paper and ink involved.

I’m also going through the bins of fabric, pulling out all of the tiny scraps that I once thought I would sew into a quilt. I still make quilts but it’s been a long time since I used a postage stamp sized scrap in one. And half inch strips of fabric? I have to wonder if I ever used any of those since each seam is a quarter inch one. I think — no, I know I am a hoarder when it comes to a lot of things but happily I’m recovering from that lately. I do find myself wishing some of those tiny scraps were a lot larger though since the fabric they came from was so pretty. But of course, there are also the scraps that are so ugly I wonder what I was thinking about when I bought them. Probably not thinking at all at the time, but now out they go.

Speaking of quilts, I’m working on one now for a granddaughter who is getting married in April. It won’t be finished by her wedding day but she will know it is coming soon. Now to see if I have a photo of it:

KODAK Digital Still Camera

Since their favorite colors closely resemble mine I had the red and navy they requested already on hand for some future occasion and this turned out to be just that occasion. The quilt has several names, depending on how the blocks are set together and I think this setting is called Windmill. In another setting it can be Flying Geese or Birds In Flight among several others that I have forgotten after the 65 years since I began quilting. One of my favorites though, whatever it’s called.

I’m still dressing Barbie and some other dolls even though I’ve slowed that down until the quilt is finished.

KODAK Digital Still Camera

Still fun to do and lately I’ve been finding more of the needles I’ve dropped over the years — most of them under, inside or behind the chairs I’ve moved as well as the shelving units that are being scooted around each time I open a new place for them. Some of those are just being dismantled since I don’t need them all after tossing out the papers and fabric, but I’ve learned to hang on to the shelves until the end of my energy spurts puts me back in the chair. I’ve given too many things away thinking I’ll never need them only to discover that I actually do need them after all.

Ah well, while the MS allows I will be getting back to it all. One thing about an energy spurt is that I don’t need much sleep until it’s over. I have wised up enough to know that a rest break every 15 minutes is absolutely necessary though. Old dogs can learn new tricks after they break a few bones due to ignoring the obvious. Remember, wear orange at some time this month is support of the millions of us with MS who are still here.

absence of pain with ms

KODAK Digital Still Camera

KODAK Digital Still Camera

KODAK Digital Still Camera

KODAK Digital Still Camera

KODAK Digital Still Camera

KODAK Digital Still Camera

KODAK Digital Still Camera

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!

Inside My Brain Cell

I speak frequently about my last remaining brain cell, the result of having advanced MS.  Lately I’ve been wondering if that is still viable, since I’ve been having a series of small strokes.  These itty bitty strokes are the reason for my absence from blogging lately, since my brain, already jumbled from the MS now seems to be even more confusing becajse of the “brain farts” as I have called them in the many years that I’ve been having them.  No, they didn’t just begin recently, just seemed to accelerate and add a new dimension.  This time my speech was affected,  It’s back now and almost normal — I think, but for a few days I had to really work at forming each word, slowly, carefully, sounding it out one letter at a time, learning the basics all over again.

It only occurred to me while emailing my friend, JeanneMarie of http://womenwhothinktoomuch.wordpress.com this morning, telling her some of these things, that I am able to share some of these feelings while others who have had them might not be, so I could possibly help someone by posting this.  Most of the people who have strokes, whether major or the minor ones like mine, are not able to describe the feelings they have during the episodes.  I’m not certain I can either, but I want to try.  I also want to urge you to call for help immediately if you suspect you are having an episode like this.  It’s a “do as I say, not as I do” type of situation, since for reasons of my own I have chosen to never visit our local hospital or any doctor affiliated with it again.  

Okay, headaches sometimes accompany these episodes, but don’t always lead the way.  I do always feel light headed, dizzy, buzzing in my ears and there is a very strange sensation that just can’t be explained.  I just can’t find the right words to describe the sensation I feel just as this one hits and I know it is time to get to a chair or bed right now before I hit the floor.

Somehow I don’t think I’ve actually said anything, but hopefully something in here will help someone a little bit,  Or scare you silly.  Just keep in mind that today you can survive anything if you catch it immediately, call for help and follow the doctor’s orders.  A good diet can play a large role in your recovery.  And don’t discount the healing properties of a good nights sleep!  I would even say the old apple a day can help because of all of the wonderful vitamins and minerals packed inside each of those beautiful little globes of natural energy.