Help with our cookbook!!

By the way, my walk MS team, team Motivation is making a cookbook this year. Last year we did a cookbook called Just Desserts. It was full of over 50 dessert recipes. This year we are doing Simply Salads and Super Soups. What we need, is a bunch of soup and salad recipes!

I have set it up so you can go online and simply input recipes for us. We are looking for at least 100 recipes! If you do nothing else with this blog, please click on this link and add a recipe of your own! It can be really simple or very complex, whichever you like...

http://www.typensave.com/get-started/

The login is:  team motivation

The password is:  grape730

Your Opinion Does Count!

 No this isn't a political ad.  It is a new commentary, this time on knowing your own MS.  I have discovered, in my experience and by reading about other experiences, that those of us with MS have as varied lives as anyone else. Our personal MS is not exactly like any other persons MS. Sometimes you might go to the doctor, and the doctor will tell you what is and is not MS related. You might feel to shy or too overwhelmed to contradict the so-called experts. Now I've got to admit that when I went to my very first neurologist, everyone told me he was the best MS neurologist I could get. He also had a lousy bedside manner, and rarely recognized my needs, even when I tried to tell him about my needs. I finally left that neurologist and got a new neurologist. This one actually listens to me, and takes my account of my experiences to heart.

I guess what I'm saying here is that it is very important to have a neurologist you could talk to. I also have a good primary physician and a great chiropractor, all of whom helped me get my SSDI.  All of them are very involved in my medical life, I guess I could say. This reminds me, I told one of them I would write her a little note to tell her how I'm doing because she was too busy the day I saw her! At any rate, I want everyone to know that your opinion counts. The doctors will not continue to learn about MS if we do not teach them about our experiences.

I know there are people out there who choose not to reveal their diagnosis. That is a very personal choice, especially in the workplace. I myself have always been open about my diagnosis. As a matter of fact I was working in a family owned business when I had my optic neuritis and was ultimately diagnosed with multiple sclerosis. Taking the time off of work to get different tests done, I felt it natural to tell them, my employers, what was going on. They are good people and he had become a bit like family to me, so I was very fortunate to be where I was.

At any rate what I really want to express is that the more we talk about our MS, whether it is only to our doctors or to everyone we possibly can just to raise awareness, our opinions and our experiences count.

Just remember,

You count!

Just an Update...

Just an update from the previous post.  Ok, so this is what have been able to accomplish today.  I have one load of laundry clean, but not put away.  The other load is waiting fort me to it into the dryer.  I did go shopping and spent over $90 for a few meals worth of food.  Too bad I don't eat those fillers of bread, pasta, potatoes, etc.  They are cheaper!

Right now I am watching the Seahawks struggling against the Packers.  That is right, I am a football fan, although to be a fan of Seattle sports, it does mean I am looking for a win.  It is hard to watch a game when the officating is so bad, but it is Seattle sports, and well, whatever.

At any rate, I was able to get some good watering done, to do my shopping, am still working on the laundry, all of the dishes are done except the plate sitting in front of me.  I don't remember what else I had on my plate, so I guess that is all that counts.  I am tired, yet will stay up for a while, if for no other reason than I am a night owl and just don't like to give up and go to bed.  Go Seahawks... and good night all... for now.

Thank you for reading.

PS.  That was so a catch by Greg Jennings, nor Golden Tate, but Go Seahawks amd Golden Tate! Wow.  Although I do like the win, I can say that the replacement referees need to go. Wow.  It looked like the Superbowl with the Seahawks.  The bad calls just went against Green Bay. I am sorry > Green Bay.  On the other hand, the Seahawks did see the worst officials in the Superbowl while they were there... still,

Main Themes in My Life

The two main themes of my life with Multiple Sclerosis... Fatigue and Pain.   I find the only way to combat these two things is to keep going.  Today, I was awakened by a phone call at 11:30 this morning. I had slept through three alarms and unknowingly turned off a couple more.  The cats had not been fed and were still shut in their little night room, far away from my ears.  

I know I have things I must do today, even though my fatigue and pain have been greater than normal.  I am basically out of food, so I have to go to the store.  I have to get garbage and recycle out for tomorrow morning's pick up.  I had to take care of the cats, of course.  I have loads of laundry that must be done before tomorrow.  

As exhausted as I am these days, I got up, dressed (a feat in itself), took my "awake" pills as I call them, took some meds to help with my muscle stiffness and soreness, and set off.  

There are rules on days like today:

1.  Don't sit, but for short amounts of time.  

2.  Drink plenty of water.

3.  Eat.  Especially protein as that is a long lasting source of energy instead of carbs which give you ups, then downs. 

4.  Turn on the music, loud enough to sing and dance if that is what keeps me moving!

5.  Remember to stretch!  Often!

Lists are good, to keep myself on track, but basically, if I keep going, I seem to remember better what needs to be done.  Of course, I must admit I have been up and down the stairs several times with the intention of doing something, then taking the laundry down to start a load, and still, the laundry sits at the top of the stairs!

Well those are the rules I can remember.  The ones I am using today - and they work well any day.  

I am off to keep doing - the plan right now is to start the laundry, then go to the store.  I'll let you know how things turn out.  :-)

Pain

People approach pain so differently.  I think of myself as a child, when I was stung by my first bee.  I remember so vividly how it happened, how it felt.  I was small, maybe three or four, and I was reaching up to the doorknob of the front door.  I was inside, and my mother said something like, "Watch out for the bee!" I turned my head toward her when I heard her voice, but by the time she had finished her sentence, I had already been stung.  The pain burned and filled my tiny hand.  It was unlike anything I could have imagined, it was so terrible and so all-consuming.

I think back on that day often lately.  Back when pain was new and something to fear.  I think of it when I think of how others might feel the pain I feel, as one who has been stung 1,000 times already, or as one who has never been stung before.  Then I ask myself how different a sensation of any kind might be between two different people subjected to the same pain.  How would you feel the pain of touching a hot stove?  How similar or different would it feel to me to touch that same place on that same hot stove?  How would each of us react?

Pain signals danger for people who live without pain, but what about for those of us who live with pain?  

Perhaps this is a question better left to scholars who are granted billions of dollars just to ask hundreds of us that very question.

For me, pain is something I have lived with daily for at least 30 of my 44 years.  In fact, I don't remember what it feels like to live without pain.  For me, it is less like swimming in tar - a thing to just "get through" - as it is like weeds in my yard.  (Perhaps I have used that analogy before.)  Pain is just a fact of life, and like any human, I have limitations.  Some of my limitations just happen to be pain-related.

Today I am thinking about pain more than I do most days... well, at least I am feeling like pain is more at the forefront of my thought.   I told you about my falling over a month ago and bruising my tail bone (coccyx, for those of you in anatomy class).  Well, I did a good job of it, and although I felt it was getting so much better, after sitting in chairs and on couches today that are not of the right shape and the right... softness or hardness (I know there is a word for that, but my mind is blank as to what that word might be...), my poor little coccyx, I believe, has wagged it's way out of alignment again, and is causing a great deal of pain.  Add to that the resulting pain radiating throughout my rear end, my hips, down my legs and up into my lower back, and pain, usually a dullish overall reminder that I have moved too much or not enough, has made itself the center of my attention.

Now, I may have mentioned this pain study in which I have been involved.  Well, I have been trying several of the techniques they have asked me to try to see if my level of pain decreases.  Unfortunately, I find my pain so severe that I am a bit distracted.  And now it is almost three in the morning and I have yet to go to bed, fearing that I may not sleep well.  This, of course, is a silly way of thinking as the longer I stay up, the more time I am spending sitting in these chairs and the more I am aggravating my whole body!  So I guess what I am trying to say is that I should go to bed now, and write more on pain some other day when I feel better and am not so absorbed in my own pain.  Good night, and know you are not alone in your longing for a pain-free day... or even a pain-free hour.

Mouscapades with MS!

Hello folks.

Okay, so up until now I've been talking more about multiple sclerosis and less about life. That's about to change. You see I am house sitting for a little while, and I had an adventure the other night.

Now here's what happened. When I get here to the house and get all settled in my first night is usually a bit of a challenge just getting used to being in a new house. Each house and each area has it's own noises.  This time, my first night here was a little bit more of a challenge this time because, even though the sounds are different from my home, I can usually detect what the sounds are and they don't bother me. This time, what I heard sounded like a raccoon outside scratching at the house to try to get in through my closet. Now the room I sleep in is downstairs and the house is one of those houses where the the front door is at ground level and you go downstairs to the back door which is at ground level. At any rate the bedroom I use is downstairs and my window is at ground level but it is just above eye level when you're standing in the room. So my closet is kind of underground if you're thinking about where the ground would be outside. Anyway so I heard this scratching noise and I finally got up out of bed and I took my cane and I hit the wall up near the ceiling in the back of the closet. The scratching stopped and I went back to bed and easily to sleep.

Two nights later, I heard what sounded like scratching outside my window which is opposite the closet. Well, I waited for a while thinking again that it might be a raccoon or it might be one of the cats outside. There's one cat in particular, his name is Jack, who stays outside. Anyway sometimes in the evenings he will find the window that is next to whatever light you have on and he will thump on the window to get your attention.  This is his way of saying he wants food. Well after hearing this noise for little while I got up and I got my flashlight and looked outside the window. There was nothing there. So I went back to bed. The next thing I knew I heard more of this scratching sound and this time I was fairly certain that it was inside my room, although I couldn't tell whether it was near the window or under the bed. I turned on the light, and was just about ready to go look under the bed when I looked over near the window again, trying to locate the sound.  Now, under the window there is a table. On the table I had a big box with a bunch of stuff inside, and when I looked over to the window and that area again listening for the scratching, I happened to notice something move near the box. Well, I looked at the box and on the edge of the box a mouse had just come out of the box and was looking at me. I'm no stranger to mice. I have two cats we originally got in order to get rid of mice that had been in our house right after we moved in. Of course since that time, our cats have shown us so much love, they feel it necessary to bring prizes into the house for us. We have received live and dead mice, shrews, snakes, lizards, a frog, and believe it or not a few moles. Like I said, some have been alive and some have been dead. We've had to chase the live ones, sometimes with the cats’ help, sometimes just to entertain the cats!

At any rate, here was this mouse in someone else's house looking at me from across the room. It made its way out of the box, across the table, down a power cord, and onto another little table, where it stopped to look at me again. Making note that I was still watching it, it bounded off the little table onto the floor and scurried under my bed. This of course did not please me! I went about looking for something with which to capture the mouse as I am not one to kill critters, but just to relocate them. As I was trying to figure out what I might use, the little critter scurried from under my bed and back into the closet. This was both a good thing (i.e. the mouse was in the contained area) and a bit of a challenge (what do I do now?)

Being the "experienced mouse hunter" I have become, I began looking for things to block the mouse in with as well as something in which to trap the mouse. All the while, I had to keep at least one eye on the closet from where the mouse was keeping an eye on me. With the two of us watching each other he would continually dart back behind items in the closet and I was given enough time to empty a box and find something with which to block him in so he couldn't easily scurry back under my bed.

Now you have to imagine this going on around midnight. I had already been in bed, and the lights had already been turned off. Of course, the lights were all on for the mouse hunt! At any rate, I kept telling the mouse all I wanted to do was take him outside and believe it or not he actually got into the box and sat down after a little while. This surprised me greatly because most mice will either avoid the box like the plague, or they will continually run away from it because it smells like danger or something. This mouse seemed to recognize the box as a dangerous place to be and would continually avoid it wherever I put it. Finding him actually sitting in there was a relief. Of course I was not relieved enough to trust that he would stay there, so while I was trying to shut the top I was also shaking the box just enough to keep him off balance. As I quickly made my way to an outer door, I realized it was dark in the hallway and dark by the door and I wouldn't be able to see whether the mouse was getting out of the box or not. Of course I also had the box in both hands as I was kind of shaking it up and down and holding it closed (more or less) so I had to use the box in order to turn on some lights. I flipped on the light switches near the outer door, then quickly opened the door and tried to fling the mouse out of the box. It turned out I also flung the box out the door! It only went a couple of feet, and I didn't see the mouse, so I shut the door and went to get my flashlight. When I got back, I still couldn't see any mouse, so I went outside shutting the door behind me and checked the box to see if the mouse was still there. He was not.

Now this should have been the end of my story, but it was only the end of that mouse. As it turns out, no other mouse has appeared anywhere in the house but many mice have appeared in my dreams. This is where my MS comes in. You see, my night was disturbed, first by the mouse himself, and second by the dreams I had afterwards. I woke up around 4:30 in the morning and could not get back to sleep. I didn't think I had been disturbed by the mouse that much, but apparently jumping out of bed and the entire ordeal of the hunt had been enough to really mess with my body. I didn't feel very well the day before and getting up at 4:30 the morning after when one has immense fatigue is not exactly an ideal situation. I must admit I've told this story to several people and all of them have found it quite hilarious, and now I can certainly laugh about it, but I am still recovering from the screwy schedule my body has suffered these last few days. Napa that start around five in the evening and last until about nine at night cause difficulties with eating schedules and cat-dinner schedules! 

As my sleeping schedule and my fatigue start to even out again I find that more often than not, life affects the MS rather than the MS affecting life.  Isn't that the way it should be? I think so!