Christmas Letters with Multiple Sclerosis Fatigue

Have you ever tried to write about your year while struggling with MS Fatigue?  I do every year, and I need help doing it.

It is not just writing that gets me.  I can do that in stages, and I tend to have at least one person check my work when I write some letters.  (You may also notice that I tend to write much more often in the evening or at night which, for my fatigue, is the best time of the day!)

It is the cognitive aspect.  My cognitive abilities have been severely dampened by my fatigue.  It interests me that it has been only in the last decade or so that cognitive problems have been linked to MS.  I had a cognitive evaluation done last year and it showed I am still an intelligent human being, but with deficits they now link to Multiple Sclerosis.  It is probably why I don't submit posts as often as I would like.  Too many things in my life to remember:  You know, get up, eat, take pills, drink fluids, pay bills, Christmas is coming... (and I really do have to remind myself or be reminded to eat, drink fluids, take pills, pay bills...!)

Anyway, back to this Christmas letter thing.  First, I started months ago to address the Christmas cards.  Really.  And I update the addresses every year on my Excel document, of which I have several copies on several devices, and I date each copy in the name so I know which copy is the latest in the copies I find.  Of course, sometimes I even delete old copies, but other times I am so worried that I will lose something important that I end up keeping them.

Next is the letter thing.  I was taking notes throughout the year, but I don't know where the notes are, so that didn't work.  Instead, this year I asked my housemate, caretaker, landlord, friend... to make a list of all the things that happened this year, and I wrote from her notes and my somewhat Swiss cheese memory.  It turned out to be a pretty good letter!  And I had only two pages so I only had to use one piece of paper (front and back)!  

Well, my back has been very painful today, so I will quit.  More later!

Headaches and the Holidays

The holidays are fast approaching, and like flood season, they are upon us too quickly and without any seeming warning.  Those of us with cognition problems may start to get "ready" in August, but we don't remember what we have done or where we might have put it!

Fatigue is the base issue for me, and I must admit that it is hard to let go of the holiday rush to rest up for the holiday cheer.  This year will be pretty slim overall.  I have not the energy, nor the finances to create the illusions of the holidays, so I will have to rely on naps, and on my own heart to bring the true spirit of the holidays to any festive activity I attend.

I mentioned headaches in my title.  I am fighting a whopper right now, as I write (hoping my typing is ok, since my eyes are half mast or totally closed)!  I believe these headaches come on as I attempt to do more with less energy, and my stress level goes up as I cannot achieve as much this year as even a year ago.  All the things I want in life are becoming harder to grasp as I reach into my little bag of tricks for magic beans that make me well enough to give all I want to give.  

Today, I am supposed to call about getting "Medigap" coverage for the things Medicare does not cover, that I still cannot afford.  I also have to call my new drug plan to see why they are telling my pharmacy they do not cover a medication I asked about before buying the policy!  Then, of course, I have not worked on my book, nor my business, nor any Christmas gifts for a while.  And I always have to remind myself to eat at least once a day (before dinner, which is a required course since everyone in the household eats at the same time), do a little walking, and take my nap.  

I have a recipe book that needs finishing so we can order copies to sell as a fundraiser.  A cover to work on, recipes to input (thank you, Mom for doing a lot of that!), proofreading and editing, and on and on.

Yesterday, my brother and two friends came out in a virtual rainstorm and went up onto my roof to fix a leak.  It is fixed, and all is well.

Our creek almost broke its banks yesterday as well, and would have flooded the road if not for a couple of new construction projects that happened the past two summers.  We may have been flooded in, which in some ways is better to me than having the power go out because with the power out, if it is out long enough, it gets cold.  Flooded in just means the roads are closed.  Our house is up far enough that we would have to have a MASSIVE storm to flood the house.

So there you go.  The holidays in a nutshell for me.  Thanksgiving at my brother's house this year, then back home.  Christmas at my parents' house, then to the other half of the family for a couple of nights.  Find out if the neighbors can watch our cats, and give medication to one of them.  Feeding them would be good, too.  I hope the neighbors are going to be home!  If not, we will have to implement Plan B, as soon as we figure out what to do for Plan B!  

Lots of stuff going on here during my headache as the holidays march closer.  I send good, happy, healthful, and especially peaceful hopes and wishes for all of you out there.

Passion

There is another show on tv that I have been enjoying.  It is Eric McCormick's new show, Perception.  I named this post Passion because we all need to find our passion in life, and the episode I just watched, from about a month ago, had a young man in it who was in college on a football scholarship.  When Eric McCormick's character (who is a college professor but also a schizophrenic - not multiple personality - with some very interesting hallucinations)... anyway, he figures out this kid in his class, who is in college on a football scholarship, has a head injury that keeps him from playing football anymore.  The kid goes back and plays in the next game and injures himself even more severely.  Dr. Pierce (McCormick) asks the kid, "Why would you do this to yourself??"  The kid says that ever since he was small, football has been his life.  Who is he if he can't play football anymore?

Now, I have to back up here.  One of Pierce's hallucinations this episode is a younger version of himself.  This younger version reminds Pierce of the plans and the dreams he had before being diagnosed with schizophrenia.  

Okay, so back to the kid, and the question he poses to Dr. Pierce.  Pierce does not let on to anyone he has schizophrenia because it is so misunderstood, and because he has a helper who keeps him kind of focused and on track so he doesn't lose himself in his hallucinations.  So what does he say to this kid?

He tells the kid that he had dreams and plans, and ended up in a hospital, too.  He thought his life was absolutely over.  The kid asked, "What did you do?"  The answer?  FIND NEW DREAMS.

Find your new passion, or reinvent an old one.  You might have noticed that the last post and this one both deal with new shows with a psychological twist.  My passion when I was going through elementary, junior high, senior high, and college was psychology.  I loved the theories and the whole world of different ideas about people... our motivations, our cycles of growth, our thought patterns... so much more.  I think watching these two shows, I may actually be rediscovering an old passion that I can grab hold to in order to make some order out of this world of mine which, for several years now, but especially since I have been on full disability, has been just a jumbled mass of lists and ideas and piles of barely started projects.  

I want to write a book on MS, and on knowing your own MS.  Psychology may just be the door I have been looking for...

Politics and why I have been away... this time...

Politics.  I really hate them, so until now, I have avoided commenting on the entire election.  I have been seeing arguments for and against each side of the races... local, state, federal.  It amazes me how badly people treat one another in the name of politics.  I see and hear what I thought were perfectly sane people talking like the apocalypse is coming if so and so gets elected... and it doesn't matter what side they are on, because both sides are saying the same thing.  All I know is that life will go on, just as it has before.  The way we as a nation treat other nations, the way other nations treat us, the way we treat each other as individuals... it all comes in waves and circles.  I don't know where this election will leave us as a nation.  I just wish for once we could go back to the days before we began locking our doors, distrusting our neighbors, and hating people we once called friends, all in the name of politics.

I was watching Matthew Perry's new show, Go On, the other night, and there is a character on there who is married and lives not only with his wife, but also with her boyfriend.  When asked how he can be so happy all the time, he explains how he has made up an old town called Harborville.  It has 700 people, and he knows all of them by name.  He goes to Harborville (in his mind) whenever he needs to escape the realities of his life.  There he is happy.  There everyone treats each other with respect.  I think we all need a little Harborville in our lives... and a lot less nonsense.

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!

Motto: Don't Fall Down!

This is funny.  I started this on 8/23, right after the fall I just explained about in my last post!  I just kept it as a draft.  Ha!  That is definitely the MS talking! Enjoy the beginning of the first message about my fall:




Yes, this is one of my many mottos, and I did not live by it the other day, although I do contest that this fall had nothing to do with MS.  I was on my daily walk through the neighboring woods to a part of the creek that also runs behind our property.  There is a new little bridge there, heavy duty enough for traffic, but on our neighbor's private property.  I try to walk this every day for several reasons.  First, it is beautiful and calming.  Second, it is not a difficult walk, but it does get my body up and moving.  I believe that is important for all of us, regardless of mental, physical or medical reason.  Third, because it is new and beautiful and can also be seen from the passing road, trespassers tend to like stopping by with motor bikes, quads, sometimes hunting equipment, and garbage, which they graciously leave behind.  

Well, the way this bridge was put up, it rises several feet above the creek (which, bu the way, is just a trickle of water but otherwise mostly dry during this time of year).  They had to build the trail up quite a way to get to where the bridge was sitting so they could clear around and make a road.  At any rate, either side of the bridge has rock covered with grass that now grows out of the hay and grass-seed mixture they sprayed all over the rock.

Background of my story complete!  I walked to the other side of the bridge, with the idea that I would walk down the grassy slope and up the other side to a little trail that leads to a campground of sorts.  Instead, I took one step off the gravel road onto a somewhat grass-covered, fairly smooth and round, large rock.  It turned and somehow 

Post Traumatic Fall Syndrome

I know.  It has been a long time since my last post. I had a fall a while back, and although it was not MS related, I have had a lot of trouble since!  

I was out doing my daily walk through some of the neighboring property and on a decline, a rock turned under my foot and I was unable to keep myself from falling.  Good for me, I was able to turn in such a way that I did not tumble down the incline.  Not so good for me, I landed squarely - tail bone to solid rock.  Sitting for long amounts of time, standing for any time, even lying down in one position for very long, is painful.  I have not gone to the doctor because even if my tail bone is broken (I am starting to believe it is at least cracked) what would they do?  They're not going to give me a cast or a sling...!  So, each night I sit on (or kind of recline on) an ice pack and hope the pain goes down a little.

For the first few days, I figured I had just bruised it.  A bone bruise can be very painful... even more painful than a broken bone, sometimes. This has been almost two weeks and it has been getting worse.  Of course, I did move a queen box spring and mattress... twice.  I never knew the muscles I used to move things...  ;-)

Well, I know you didn't come to read about my posterior issues, but about my MS.  Unfortunately, except for ranting about how tired the pain has made me, my posterior is really the only thing on my mind... (For those of you with a more literal understanding of the world... I am happy to report that my rear end is not currently actually on my head!)

At any rate, more on MS next post.

Is It My MS, or Is It Me??

I went to a presentation the other day with the above title.  It turned out to be a basic introduction to MS, mainly focusing on people who are not longtime members of the MS family, and everyone attending had been diagnosed anywhere from several years ago to several decades ago.  I must say the most amazing thing about people with MS.  We can talk about ANYTHING once we become acclimated to our own MS.  The "Ambassador" who came to talk to us spent most of her time talking about catheterizing.  Lovely thought for anyone, and not something people would normally talk about to strangers!  Still, there we were, listening to her, and then we began comparing our own experiences with diagnosis.  It was really a loss to me to have the main presenter show up because I think that we MSers would have really enjoyed sharing our stories with each other.  One person didn't even get to share her diagnosis story because the presenter came in and we were basically told to listen to him.  Not in a bad or rude way, of course, but to "get the ball rolling" with the show, as it were.

I don't have much contact with others with MS.  I live outside a small town, and even the closest "support group" is almost an hour away.  I am usually too tired or too distracted to remember to go, and truthfully, there is not a lot of time for just two or three of us to talk.  If I don't "click" with someone pretty much right off, I am less likely to engage.  My brain wanders.

The people at the program all seemed to click with me.  One even emailed me later.  You see, I am making a cookbook this year for my Walk MS team, and she emailed just to say hi and to let me know she would be sending some recipes.  I thought that was nice.

So when do we ask ourselves if something we experience is MS or just us?  I say we have to learn about our own very special MS.  Each one of us has an MS that no one else has. It is ours.  It is not who we are, or what we do, and I do not say I "survive" it or "struggle" with it.  I have MS.  The weeds grow in my yard. These are facts that hold no particular weight over me.  But I have learned (and continue to learn) the difference between pain that is CAUSED by my MS, pain that is RELATED to my MS, and pain that is just normal for anyone who, say, twists his ankle or burns her finger.  Does my eyesight fail because of MS, or because of age?  My eyesight is not as good when I am fatigued and the fatigue is part of my MS, but if I get enough rest (and don't rely on my readers, but exercise my eyes), my vision is still 20/20.

One suggestion I would make to anyone who has been diagnosed with MS, whether last week or last decade... get a cognitive evaluation done if you can.  I had one, and I have discovered that more and more doctors are suggesting it, more and more weight is put on it if you need to get on SSDI later, and even though I am on SSDI, I have a wonderful baseline cognitive report that helps me to understand and to explain to others why I am no longer as good at some things as I used to be.

So is it me, or my MS?  Is it you or your MS?  Your doctor may be able to point you in the right direction, but only you really have the answer.

Fatigue is an amazing thing

Fatigue.  Yes, I have said it before, but I will say it again... fatigue sucks!

I have spent the last week or more sleeping until 2pm... or 3, or 4pm... and still going to bed a few hours later.  I have been so tired, my eyes will not focus, so I can only sort of see what I am writing!  I know I am typing correctly (I usually use Dragon software), because there are no red lines under the blobs that are supposed to be words.  This sleeping and fatigue-related visual response means no reading, no playing of small games, and not always even being able to tell what is going on on the big screen tv.

Add to my lack of hours in a day and my visual challenges, my fatigue makes my pain worse, especially around my rib cage and the backs of my legs, and when I walk, I am more likely to list to one side, or bounce off the walls/furniture/other people on my way to wherever I am going.

Most of the time, with fatigue this bad, I find that getting to where I am going is further complicated by the fact that all of my brain power is spent trying to stay upright and ignore pain spasms, and not enough brain power is saved for recollection of where I was going, let alone why.  So, when I stop someplace, it may or may not be the place I was originally headed, and I certainly don't have a clue as to why I headed there.  (Now people, I am sure you realize that I am talking about what I am doing in my own house.  This is a description of today, within the confines of my own domicile.)  While trying to get something accomplished today, I have instead started something like 7 or 8 projects (no kidding) and only finished one - just today.  The fact that this has been going on for several days, and possibly more than a week, makes me appreciate my housemate/caretaker all the more.

And with that, folks, I am off to take more meds and go to bed!  (Red line... glasses... they make the blob big enough to make out the fact that I did actually type what I wanted to type...I think)...

Multiple Sclerosis and Medicare thoughts II

Well, I have been looking into this Medicare thing, and although I am excited, and there is a lot to learn, it seems to me that having been given four and a half months to investigate what I will and will not need to do is a good thing.  For example, I need drug coverage.  I want to find out about chiropractic care and acupuncture. I would like to see if there is any way to get some of my supplements reduced, but I doubt that is likely.  I am not old enough to have my drug plan through AARP, but there are many choices out there.  I would like to continue using my regular pharmacy, so that is an issue.  I can't pay too much out of pocket, so I have to weigh the cost of Medicare A and B with the D (drug plan of choice) plus the cost of the meds.


It is a good thing I like to learn!  It is a bad thing, for me, that I have so many different things going on.  I have been trying to start a business in my home to bring in more money (more on that another day) which has been taking money instead (not any more, except small supplies for now), I have this medicare stuff to learn about (insurance is sooo much fun  :-(   ), I am in the middle of sorting papers from life which have just piled up over the last four years of living here, I have unearthed a little patch of floor in my den, but lost ground in my bedroom, and I am sure I am forgetting several little projects (like cleaning the pole barn, framing a picture for my brother, making dinner every night, trying to get to bed at a reasonable time and get up at a reasonable time, working on trying to get more product for my business, working on writing my book...)... Whew!  And more!  This all from someone who, according to my neurological evaluation, has trouble multi-tasking, forgets unrelated items easily, and gets distracted by the smallest thing.  And all that is true.  I go down the hall, intending to get my stapler in the den.  I get to my bedroom (past the den) and see the bottle with the pills I was supposed to take an hour ago... I sit down on the bed, then bring my feet up and start playing on my phone or reading a book.  Soon, I am thirsty, but don't have my water in the bedroom, so I go to the kitchen, once again passing the den.  The show I was watching is still on, so I sit down to watch it.  There is paper around me so I start sorting it, but don't get very far because I am so distracted by the show, and just looking down means I miss dialogue on the show. And so it goes.


Well, gotta go to bed now so I can try to get up at a reasonable time and learn a little about medicare, but first maybe I will read, or sort, or work on my business, or make coffee, or start a budget, or maybe play a game or perhaps even work on making my bookmarks... but first, I should frame my brother's picture... if I remember before I turn on the tv...

Multiple Sclerosis and Medicare

Well, I received my medicare card in the mail today. I am excited that I may not be paying Regence anymore, but wary about what my coverage and cost may be with Medicare.  Anyone out there know about Medicare as it pertains to MS?  I will be looking into blogs and message boards for information, as well as emailing a few folks.  I need to know if it is going to cover things like MRIs and my Rebif injections.  I also have several muscle relaxants and medications for spasms, as well as something to keep me basically awake and somewhat focused during the day.  If anyone has any information about Medicare and MS, please respond!  Meanwhile, I will look and see what I can find, then share it here.

Late Nights

Some people seem to think that because I operate best at night, I must not need that much rest.  The thing is... I rest all day.  I don't get up, usually, until at least noon, and although it is almost midnight, my adrenaline has kicked in just enough for me to operate in a semi-drunk-like state... which means although I feel more clear-headed, I am really late getting to bed!  Does anyone out there have this problem?  I guess it is just me, trying to squeeze every last moment I can out of a day already passed.  


My long term disability insurance has asked once again for proof that I am still disabled.  They want my last two years' tax returns.  I didn't send in a tax return for 2011 because I didn't pay any taxes on my disability income.  I finally got a letter in the mail from the IRS saying that I am telling the truth when I say I didn't file!  Now all I have to do is find the 2010 taxes... Ugh.  Not tonight.  Tonight, I need to brush my teeth and go to bed.  Yay!  It is not a shot night!  (I inject myself Mondays, Wednesdays, and Fridays... and not just for the fun of it!)

Too tired to be tired!

Ok, so I have paused from my story for a little bit.  Today was my last day of a three-day book sale / garage sale, and I am beat.  My housemate / caretaker did much of the running around, and my mom and my aunt were here for two days of the sale.  My dad was here today and was here to help clean up.  


Still, the excitement of the sale itself, as well as the preceding months when I worked to get ready for the sale, have completely worn me out.  I am looking forward to the next week because except for going out to dinner for my mother's 69th birthday and my father's big 70th birthday, I have absolutely nothing I must do.  Sleep will be a major factor in whatever I might decide to do!  I will get a good 12-14 hours tonight, waking up only for the bathroom, or if I am told I need to wake up long enough to eat a little, or drink something. Sleep during the day tomorrow will also be significant, with intermittent pauses for sitting in my recliner and watching a show or two.  


Fatigue hits people in many ways.  My fatigue can rob me not only of the daytime when I am sleeping, but also my ability to think clearly, to talk coherently, to remember even the simplest things (like what show I am watching), to my ability to walk, to hold things, and on and on.  


It is now way past my bedtime, and like I said, I will be asleep most of tomorrow as well, so I will continue this a dew days from now..... G'nite!

Break from Life Story with MS

Tonight, I thought I would share with you the fact that over this week, I will be spending all my spare time and energy working on getting ready for a huge book sale./ garage sale to raise money and awareness for Multiple Sclerosis.  You may not see a blog from me for at least a week due to the busy days.  Fatigue, a huge part of my life, will not let me work as long as I need to to get this all ready, so I will plug away at it, hoping I have the sense enough to take breaks or whatever when I need to do just that!

Well, wish me luck, and I will be back in a few weeks to tell you how it all went.

Multiple Sclerosis Symptoms and My Story: Part 5

After the MRI, I made my way to the hospital and was directed to the floor where I was to get the Solumedral.  It turned out that the IV was put in the back of my hand (another nerve-wracking experience for someone who hates needles) and would take an hour each day.  They had chairs for me to sit in, and I think I brought my own water bottle and a book.  I tried not to look at the IV sticking into my hand, and when the first hour was up, the nurse came in to give me a choice. I could keep the IV in my hand all three days (they had some nice, soft, gauze-like stuff to cover it), in which case I would not have to go through having them to insert it each day, or I could have them take it out, then put it in again each day.  I chose to keep it, but my stomach was turning so much having that darn thing in my hand that I turned around at the elevators and asked them to take it out.  I wanted my hand back!

It was hard to believe all that had happened, and it was only Tuesday.  I had gone to the emergency room just the Friday before.  I was shaking with stress, and felt I needed comfort and sleep.

As far as the MRI, I waited for the next appointment back at the neurologist's office, which I think was about a week later.  My mother and I were told that it showed three lesions (patches of scarred tissue, typical of MS).  The neurologist also said that optic neuritis was only one single incident of one clear symptom, and that some people never develop a second clear incident of a different symptom, so he was going to wait until a second symptom actually appeared, and until then, as far as he was concerned, I did not have Multiple Sclerosis.  

Multiple Sclerosis Symptoms and My Story: Part 4

My Introduction to a Disease Called Multiple Sclerosis

Once Monday came, I went to see my new ophthalmologist.  She did a bunch of eye things and said I had optic neuritis, and told me that is a first sign of a disease called Multiple Sclerosis.  She arranged for me to see a neurologist later that day.  (I didn't like the idea of "having something," and getting in to all these specialists meant that "something" was pretty serious.)

After seeing the neurologist, I was scheduled for a bunch of tests early the next day, including a Visual Evoked Response (VER) test.  This VER had me looking at a small tv screen with a red and white checkered background that changed, the black squares became white when the white squares became black, back and forth.  I was supposed to be staring at the little red dot in the middle.  My right eye was boring.  My left eye was fun! The black and white colors zigged and zagged across the screen, and up and down.

When I saw the neurologist after these tests, he had already scheduled me for an MRI (magnetic resonance imaging) of my head - at 3 pm that day, and for the first of three steroid (Solumedral drip) treatments - one hour each day for three days - to hopefully help me regain my sight.  More flags going up that this was serious.  And although I am not great with closed-in spaces, I told them I would be ok with a closed MRI because it would be like being in a tube, with both ends open, and just my head inside.  I was still a bit worried.  I canceled all the plans I had had that day (including going to watch a football game with a friend who was counting on me to be there), and began a journey of surprises.

The MRI, which was actually two, one without a shot of stuff that would show up as "contrast" in my brain, and one without, was nerve-wracking for someone who had no idea what to expect.  It was full of loud, pulsating whumps that changed now and then.  I was further in the tube than I thought I would be, and my head was encased in this contraption to keep it totally still.  I have always hated for my head to be held in any way, so I am not sure which was worse:  the tube,my head being held like that, or the shot of "contrast."  All contributed to unsettling my nerves, and all I really wanted after two whirlwind days, was to go home and curl up, but I knew I still had to go to the hospital for the Solumedral.  (I still didn't know what all that entailed).

Multiple Sclerosis Symptoms and My Story: Part 3

There were more, less notable instances when MS showed up in my life, and my legs have never been "my legs" since 1980, but it wasn't until 2002 that MS was considered a possibility by doctors.  I was working as a bindery and delivery person for a locally owned printing company.  I woke up one morning, and my left eye was a little foggy, and felt kind of "gummy."  That happens to a lot of people, and had happened to me before, so I was not worried.  I knew that as I woke up, and blinked a bit to clear my sight, things would return to normal.  They didn't.  I called, at the insistence of a friend, and made an appointment for that Friday with my doctor.  Over that week, the sight in that eye deteriorated until it was like I had stuffed a wad of cotton in my eye.  It still felt weird, and I couldn't really see.

Friday came around and I was glad I had my appointment, but still not overly concerned.  That morning I got a call from my doctor's office.  He refused to see me, and had cancelled my appointment.  Instead, he told me to go to the emergency room.  I was more angry than anything.  Why should I pay to go to an emergency room when I had had a perfectly good appointment scheduled with him all week?  Seriously.  And why now, if he was so "concerned," instead of calling sometime earlier in the week?  A "real doctor" who had concern for a patient would have made time for that patient as early as possible, not send the patient so some unknown doctor.  At least that was my thought.  (Anyone living in the Olympia, Washington area who wants to know this doctor's name, please comment and I will share.)

I waited until the end of my workday instead of becoming alarmed after a week of waiting for my doctor appointment.  Once I was able to be seen by one of the emergency room doctors, he told me he couldn't see anything wrong with my eye, but thought I should go in to see an ophthalmologist.  I was okay with that, but as it was Friday evening, around 6:30-7:00 pm, I was very surprised when he came in with a business card, and on the back of it was the name of the ophthalmologist I was to see, and the appointment already made for 9 am on Monday morning.  Ok, so this guy did see something, and was concerned.  I had all weekend to wonder what, but I still figured I would find out in time, and that was that.

Multiple Sclerosis Symptoms and My Story: Part 2

In the 1994 or 1995, I suffered a bout with extreme dizziness and vertigo.  I was driving a tour bus at the time, and according to my eyes, the road lifted up and began to swerve back and forth as it rolled up and down.  I felt I would fall out of my seat, and each motion I made to turn my head to the side mirrors, or to speak to the few passengers on board, left me feeling worse.  Fortunately, I had another motorcoach following me, and I radioed back to that driver. I told her what was happening, and that if I were to start weaving or showed any signs of dangerous driving, she needed to radio to me and have me stop.  Meanwhile, if I kept my eyes on the road, and did some deep breathing, I felt well enough to get these passengers safely to their destination, just a mile or two away.

I didn't realize how upset I was until I got back to the bus yard and yelled at the dispatcher.  I thought I had just been not feeling well, and accused her of sending me out when she knew better.  (Later, I apologized to her, because almost as soon as the accusations came out, I knew it wasn't her fault.  I was just too spent from the trip, and emotionally, I had to blame someone at the time.)  Once again, the doctors could not find anything wrong with me, and in the end, called it "unknown allergies."  I was put on Meclizine, which has the caution of not driving heavy machinery.  I was put on bus-washing duty for a few weeks, while I took the medication that helped me be "normal."

Again, because of my extensive research on the topic, I know now that this was another flare-up of my MS.

Multiple Sclerosis Symptoms and My Story: Part 1

I have been writing long enough now, I thought a bit of my story is in order.  This will come in several little "chapters, so this is chapter 1.


I look at my life with Multiple Sclerosis and before.  Ok, before I was diagnosed (dx) not necessarily before MS became a part of my life.  There are some thoughts that strike me regarding Multiple Sclerosis Symptoms.

First, that wonderful phrase almost everyone hears at one time or another:  "But you look so good!"

Ok, so much of MS is invisible.  The pain.  The muscle spasms.  Forgetting words, or at times, whole conversations, or even where you are or where you are going.  I read a lot, and if it doesn't seem very pertinent, I forget that, too. Bladder and bowl issues.  (Those of us who have yet to experience such issues breath a sigh of cautious relief here.)  Strange sensations such as a burning sensation, tingling, pins and needles, and more.  Facial pain.  Numbness.  Muscle weakness.  And the list goes on.

My first symptom, the one we can trace back to sometime in 1980 (I have a little finger dyslexia, whereas I used to be a pretty good typist - I typed here we would trace back to 1080, and I am certain I am not THAT old!)  Anyway, that was when my legs started feeling a little wooden, like they were not mine.  I think it was a year or so later, I actually asked a friend of mine, who was the track coach, to watch me run.  She said I didn't bend my knees the way I should when I run.  I practiced high-stepping and jogging while concentrating on lifting my knees, but it just wore me out.  I figured there was something "not right," but left it at that.  Doctors could not find anything wrong, and when my knees (first one, then years later) began to be so painful I could not walk, I went to several doctors and specialists, all of whom diagnosed something different.  The last one put me in a leg brace and on crutches (one knee was acting up at this time), and gave me some exercises I dutifully practiced.  After six weeks and another set of x-rays, he said to me, "Well, it doesn't look any different.  Does it feel any different?"  I told him yes.  It was stiff and weak.

Well, after extensive research on the topic, now I know better.  This was the true beginning of my MS.

Summer Is Coming! Ups and Downs...

Ok, so today we saw a warm day.  The thermometer here at our house hit 77 degrees.  Too hot for me, but encouraging all the same.  I am so excited about the garden!  Garlic I planted last year or the year before is up and enthusiastic.  In fact, it has been up for months, and I am just waiting for it to be ready to pull.  The beans, carrots, and onions are just showing, and I am hoping the weather will turn nice enough to encourage the little plants to grow.  Our strawberries are in their third season.  The plants themselves are overflowing the garden they are in (all of my gardens are raised-bed gardens).  I haven't seen many blossoms, but am hopeful!

We also have a beautiful (unplanned) bunch of blackberry vines growing along and onto our front porch. I figure, why wrestle with it now, when we could enjoy fresh blackberries, practically delivered to our front door!  Besides, we don't use the front door often anyway.  LOL

So, what does all this have to do with my life with Multiple Sclerosis?  We have to look for positives wherever we can, especially when we have days that are frustrating, when we are struggling with depression.  Summer is, of course, a time when life seems brighter as the days get longer, the flowers are blooming, and we feel more energetic.  It is also a time when I am more affected by heat, unable to go outside, even on my "good days" when I have more energy.  I want so much to feel the sun on my skin... maybe collect a little vitamin D naturally, while perhaps getting a little "color" (I don't tan, I just get enough color to fade my "glow-in-the-dark" skin!).

The heat makes me more tired, and I find myself needing to sleep extra hours, while not wanting to "waste" all the sunshine.  So, my excitement about summer is kind of a double-edged sword.  It won't be cold, wet, and gray out, which tends to help bring my mood down when things are not going well for me.  At the same time, even though the sun is out and everything is so beautiful that it is harder for my mood to be brought down, it may also get too warm for me to do the things I want, like water my plants, many of which are in pots.  (Usually, I have to go out at dusk to start watering, and that takes hours!  It wouldn't be so bad if it weren't for the fact that the mosquitoes LOVE me!)  It is frustrating to sleep one's sunny days away!

One coping mechanism I have found that tends to do me worlds of good is, believe it or not, when I am out and getting overheated, water my head down with water from our hose that is hooked directly to our well.  Boy is that water cold!  The first time we did this to me, I was in Portland with my caretaker/friend, and we were walking around some sort of celebration where they had booths for food and drink, as well as booths selling other items.  As we walked, she noticed I was getting more and more tired, and could hardly drag my feet along.  She bought water for us both, and although that helped, she figured I was getting overheated.  She went to get a big cup of ice water.  I was sitting on a bench when she came back, told me she was going to cool me off, and told me to take off my baseball cap and lean forward.  She actually poured that ice water, ice and all, over the back of my head!  Darned if it didn't do the trick!  After gasping a little, I rubbed the water through my hair a bit (I have short hair), and got up from the bench, re-energized.  Ever since then when I begin to feel a bit sluggish due to heat, I go put my head in a sink under cold water, or use the cold water from a hose.  It doesn't matter where I am, and when people look at me quizzically, as people will do, I just explain that with my MS, I have to do this to continue functioning in warm weather.  I get more smiles than anything.

So, for those of you with problems with heat, try dipping your head in cold water.  Sure, short hair is easier, but not an absolute must.  Don't be shy.  Don't be vain.  Instead, just remind yourself you are being PROACTIVE!

DOING BATTLE WITH FATIGUE...

Doing battle with fatigue is not really what it is about.  It is doing battle with myself.  I am a doer.  I see a nice day, I want to go out and work in the yard.  But no.  If I do go out, I will be bedridden for a couple more days.  If I sit and be good for a few more days. I can do more later.  I hate fatigue!!  But tonight, I am too tired to complain about it any more.  ;-)

Instead, I will ask, does your pain get worse when you are fatigued, or does you fatigue get worse when you are in pain?  No, this is not a "chicken or the egg" question.  For some, the answer is yes for both.  For others, it is yes for one and no for the other.  I am curious.

Late night leading to an early morning...

Just a quick one here.  I learned, a few days ago, that a friend of mine passed away.  It may sound kind of funny, but he was my pharmacist.  He was a really big man.  In so many ways.  But physically, he was about 6'3", with such a big bone structure that his hands made my hands look like a child's hands.  He filled the pharmacy in a way that made everyone a friend.  He welcomed people by name.  When I would go get my prescriptions filled, he always came out to hold my hand.  Once, he saw what I had been prescribed and took the time to look up all the information in the evening, at home, because he knew what else I was taking and this was an oddball prescription to be thrown in the mix.  He was truly one of a kind, in this day and age, especially.

Tomorrow, I am going to his funeral.  They are calling it a Celebration of his Life, but really, it is for us to say goodbye.  I am not really looking forward to it, but I am toying with the idea of getting up to speak for all of us who were under his care before he lost his battle with cancer.  Wish me well, and know the world lost a gentle, kind, comforting soul.

Question for EVERYONE

Ok folks, I know I don't have a stellar following yet, but who knows?  I may become popular and famous someday!  Now, it is late and I should be in bed, but I have been playing around with the settings on this blog thing, and I am not sure if the font size works best for people set at "Normal" or set at "Large."  I know some people have an issue with vision (I know I have issues with my so-called 20/20 vision, especially when I am tired...hmmm), but perhaps Large is too large for some, in which case I should use Normal, because that is what looks best on the blog, and makes it easier to scroll through the posts...  I am thinking there should be something in between... yet I have not found a solution...  I will go with Normal for now, even though I have absolutely no clue what "Normal" means.  There is no "Normal" in my life!
Ok... Bedtime for bonzo...

ANOTHER "LAZY" DAY

I was asked the other day at Costco how MS effects people.  It seems like such a small question.  It is certainly one that can be answered easily if one is talking about a cold, or even some diseases.  But Multiple Sclerosis?  I told the person asking that she could gather 100 people with MS, and each would have a different story to tell.  There are similarities between us, sure, but no two people with MS experience it the same way.  


After living with some of the effects of MS for years before the diagnosis, and now living with the diagnosis (dx) for almost a decade, and living on full disability for the past two plus years, asking me about how MS effects even just me is almost mind-blowing!  I feel a need to hold a seminar, which was kind of what happened in Costco.  


Slowly, people gathered around, listening to what I had to say about MS in general.  Many asked questions.  It was really nice to be so open about this disease and have so many interested.  It is something I would like to do someday.  Of course, when the little impromptu "session" was over (I was tired and people wanted to get back to their shopping), one hip had "locked up" on me, and I had to walk it out, pushing my cart, of course!


So, today is a lazy day because I decided I needed a few more days of rest.  Yesterday was my nephew's tenth birthday, and I so I had a long day driving into the city, and running a couple of errands before meeting everyone for dinner.  I can do that only about three times a month, if I don't want to wear myself out until I am basically bedridden for a week to a month.  I didn't get my 12 + hours of sleep in last night, either, because the cats spent an hour this morning trying to convince me it was time to go out.  They didn't win.  :-)


I did have to make a call to MS Lifelines, though.  It seems that since my Rebif is now covered by my insurance, I have to pay more for it than when it wasn't covered by insurance. Does that make sense to anyone??


Lots of thoughts today...  Maybe tomorrow will be more focused.

More Bumps in the Road

Ok people.  So everyone has a day... a week... a month... a year... or maybe even a decade, when the bumps in the road of life feel insurmountable.  Yesterday, I was battling depression.  As an intelligent human being with the ability to have "gone all the way" in my education, and snag a big, "important" job with a six figure income, I chose to move through life wherever and however the wind blew.  I jumped from job to job as I learned about this or that, and until I was diagnosed with MS, I did not think I needed to worry too much about finances.  As long as I could pay my bills now, what was the worry for later?

Then Multiple Sclerosis hit.  Now, we can actually trace my MS symptoms back to 1980, but since my symptoms were not connected at that time to MS, they are still not recognized by medical professionals.

But back to depression.  I cannot work anymore.  I am bringing in only what Social Security Disability Insurance give me, and a little more from Long Term Disability Insurance through my last employer.  It all equals about a third of what I was bringing home when I was working.  

Six years ago, with the economy plummeting, my housemate tried to sell her house while buying land and building a house in which we could both live.  Her old house sold at about half the original value.  The house we now live in is worth less than what we owe after five or six years of paying.

I told you earlier about my medical insurance, now covering my Rebif at 50%, which leaves me with possibly several months without medication, as I cannot afford 50%, or even $50 more per month if I want to eat or put fuel in my car once in a while.  

All of this self pitying has a purpose here.  I have struggled with depression and anxiety all of my life, and I have come up with some coping mechanisms which may help anyone interested in suggestions.  


First, when I cannot face the energy it takes to do anything, and I just want to get away from it, perhaps hide under the covers on my bed, I will read a book.  We're not talking about education here.  We're talking escape.  It just so happens, my most favorite books to read are fictional mysteries.  A good genre to take my mind off of anything!  I don't even go for the more complicated mysteries.  Nancy Drew or the Hardy Boys would do it for me.  I am currently reading Carol Higgins Clark books and I am almost completely done with the Mary Higgins Clark books.  Not hard.  Just enough to get me out of my own shell and into someone else's for a while.  I also enjoy James Patterson, Sue Henry, Dick Francis, and several others.  


If I have a little energy, enough to face life as far as getting up and getting some coffee... I may look for ways to bring my mood up a bit.  I can listen to Deepak Chopra's Creating Affluence, which is a quick book on cd that gets me feeling like a part of the whole world, in a good way.  It helps me lift the load off of my shoulders and give it back to the universe (God, or whatever you may believe).  


I also like to look for good quotes.  I used to sit in our local Hallmark for hours, going through card after card, writing down the quotes I liked.  I saved them in a three-ring binder I still have, thirty years later.


Now that everything is all about the internet and smart phones and tablets, I searched last night for quotes to put on my phone.  I read several and fell asleep with one on my mind.  




"Let no feeling of discouragement prey upon you, 
 and in the end you are sure to succeed."  
                                             -- Abraham Lincoln



Wow.  How appropriate for that time.  For many times when we are discouraged because things are not going our way.  We don't have enough time or energy or money or whatever... A bump in the road.  It may seem a mountain; insurmountable at the time, but we all face them.  Bumps in the road.  Once we bring ourselves back into focus, we can all succeed.

Regence Medical Insurance

Well, I just found out that my Regence Evolve Plus medical insurance, which I started out paying $150 per month for and has now gone up to a whopping $336 per month, now "covers" Rebif.  What this means is that I am now "allowed" to get my Rebif with 50% coverage.  50% of $2400????  And that helps me how??  MS Lifelines, which is a great organization, was helping me get my Rebif for a reasonable amount, considering my less-than-stellar income.  Now, MS Lifelines has a program to help, but because of the so-called insurance coverage, the program is not as helpful as when I have no coverage.  I still have several months to go before I am eligible for Medicare, and I have no idea what that means.

Thoughts on my Cognitive Evaluation

Last April, I was able to go in for a cognitive evaluation.  I wanted to know where I am at.  I know I have difficulties I did not have years ago, and although people say things are age-related, I am not one of those people.  I think if you think about age, and what is "supposed to happen," it will.  If age does not matter to you, and you continue life as though you are "young," you will always be younger than you are.  I am 43, have maybe a couple of gray hairs, and was carded when entering the casino just a couple of years ago.

At any rate, the cognitive evaluation... I wanted to see what they would say.  After two grueling days of simple tasks, I was exhausted.  Add this, repeat that, figure out the pattern...  As a perpetual student of psychology, I found it all fascinating.  A week later, we met with the doc about the results.  It turns out, I am not going crazy. It turns out, I am intelligent.  It also turns out that I have lost some cognitive function that is considered as directly related to the Multiple Sclerosis.

Multi-tasking is hard for me.  I used to be one of the best, but now, not so much.  When I am fatigued, concentration and other mental functions fly out the window.  I am like a zombie!  I'm not sure I look any better, either!

One task I never fully completed in the evaluation was repeating back 12 easy words.  I thought it was 20 words, and I never got all of them.  I could remember pairs of words, but not single words.  They were simple words, too, like "bus" or "tree."  It made me think of all the times I walk into a room only to wonder why I am in that room.  Sometimes, I figure out that I am not even in the room I had originally set out to enter!

Well, I am still wiped out, after four or five hours of "napping," so I am going away again.  More rest for the weary...

Thoughts about fatigue etc.

I thought I would write more about how fatigue is a process.  Too bad I am too tired to think of much to say. I used to work long hours, then come home and work on the house, the yard, whatever.  Now, going to town (three miles away) seems too hard most days.  I have the drive to move forward, to do more and contribute more to my life, but this MS fatigue is something you can't just "push through."  I am used to just pushing through adversities..   I guess for me, one of the processes involved in this kind of fatigue is learning to allow myself to sit, to be quiet, to nap, and worst of all, learn to let things be.

Fatigue also effects my thinking and my speech.  I forget where I put things, what I am supposed to do, and why I am in one room when I just had the purpose in mind.  For others, this is something that happens.  It is something that everyone can relate to, in their own way.  "I hate it when I do that!"  or "I know exactly how that feels!" are reactions I get.  It's part of getting older, is another good theory.  But with MS, it is different.  It is more constant.  The brain is in there, but the neurons just aren't connecting in the same way.

I am going to nap now.   Maybe on my way I will remember I have to find a phone and make a phone call... maybe not.

Building a Business with Multiple Sclerosis

I have been, over a year, trying to start a business online.  I am on Social Security Disability Insurance (SSDI) and have been unable to work a regular job due to complications that arise from and that contribute to the MS fatigue.  It is this fatigue that keeps me down.  It is this fatigue that inspires me to find an hour here, an hour there, when I can, with the help of medication, do something to earn my keep instead of just living off a small government check.

Next post, I hope to have FATIGUE AS A PROCESS, PART II.

Gone so long, but back now...

It has been a very long time since I have written on my blog.  I am sorry.  The last several months have been very trying.  I have a cat, Sampson, who has made it his business to be my service animal.  When I am too tired to get around, he lies on my legs, and refuses to let me up.  The funny thing is, he hates being on anyone's lap.  He checks my shower before I get in, then lies just outside the tub until I get out.  He greets at the door me when I get home from appointments and such, and if my housemate "lets" me go out alone, he gets mad at her, as though he realizes I do not have anyone watching me.

Well, in January, Sampson began vomiting almost constantly, and couldn't eat anything.  We took him to the vet several times, and to the vet emergency hospital.  He was scheduled for an ultrasound on a Tuesday, and by the preceding Friday, when we took him in again, his regular doctor looked at him (he had lost about 25% of his body weight in ten days), and told us he didn't think Sam would last the weekend.  We got Sam in to an emergency referral veterinary clinic in another city, and the internist who does ultrasounds waited for us. After the ultrasound, they admitted him overnight and we stayed, sleeping on the concrete floor in the waiting room.  After making sure he was stabilized, they had us take him home until Tuesday, when he was scheduled for an appointment with the internist who would look at the ultrasound and most likely take a biopsy.  Our regular vet had let us know he was afraid Sam might have intestinal lymphoma, a cancer for which there is no cure.

Tuesday came and we were back at the emergency referral veterinary clinic, and the internist recommended surgery and several kinds of biopsies.  Sampson was cut almost stem to stern, and six biopsies were taken of his liver, pancreas, a lymph node on his small intestine, and three along his intestine.  No lymphoma, but he has "triaditis" which basically means intestinal bowl disease, pancreatitis, and something to do with his liver.  He has to be on a special diet and has medications we give him every evening.  On top of that, we have to watch for signs of diabetes.

On the good side, he is slowly gaining weight, has been getting to go outside a few hours a day, and seems to be gaining his strength and stamina slowly.

This has all been very tiring for me, with my fatigue.  The stress alone has brought my energy level down, and  the months of round-the-clock care for this very special member of our family has tested the bounds of my abilities in ways I would never have thought I could endure.  With that said, the months of recovery with which I continue to struggle are worth every moment of time I have to spend with my friend, Sampson.  He and I are regaining our health together.