Take a Flying Leap!

The calendar which serves as the standard calendar throughout most of the world has both common and leap years.  This was first established during the reign of Julius Caesar.  A common year has 365 days and a leap year has 366, with the extra day on February 29^th.  A leap year occurs every four years to synchronize the calendar year with the solar year.  The solar year is the time it takes the earth to complete its orbit around the sun, or about 365 ¼ days.  However, the length of the solar year is slightly less than that, so three times every four hundred years, it is omitted.  So how did leap year get its name?  The day that a certain event falls on moves one day each year.  If Christmas was on a Monday last year, it would be on a Tuesday this year.  When February 29^th is added in the leap year, the days after that date are moved forward.  So, if Christmas was on a Monday last year, it will be on a Wednesday instead of a Tuesday.  It has “leaped” a day.

Are you confused yet?? I am!!  Funny how things that should be simple are explained in such a complicated manner.  That is the way it is with medical terminology.  There are so many easy ways to just say something without going into a lot of in-depth explanations about something.

Take, for instance, MS.  In simple terms, multiple means many and sclerosis means scars.  Although some people only have a few scars on their brain or spinal cord, scars showing up on an MRI is one of the major means of diagnosing MS. 

The body’s immune system attacks itself in MS patients.  The white blood cells attack the fatty covering (myelin sheath) that insulates and protects the nerves.  Healthy nerves become exposed and mixed or abnormal messages are sent to the various parts of the body.  Since the brain may send a message to one part of the body that ends up in an entirely different part, everyone’s MS symptoms can be different.   

When I was in school, we used to have an Olympic games day.  We would have races, broad jump contests, push up contests and all types of physical activities.  Ribbons would be handed out to the 1^st, 2^nd and 3^rd place winners.  I won a couple of ribbons in these games and was very proud of them.

Although my physical “leaping” days are  over, I leap for joy with each day, thankful to God that He has blessed me more than I could ever have hoped for and given me another day to praise Him!

The Music Goes Round and Round…..

In my hometown park there is a carousel.  It is a 3-Row Denzel Menagerie Carousel built around 1906-1910 at the Denzel Carousel Company in Philadelphia.  It contains 46 hand-carved wooden animals including 25 horses, 4 cats, 4 ostriches, 4 rabbits, 4 pigs, 1 deer, 1 giraffe, 1 lion, 1 tiger and 2 chariots.  The eyes are glass with pupils and the tails are horsehair.  There are mirrors and scenery panels around the top.  Old calliope music plays constantly as the rides go up and down and around and around. It is beautiful, unique and totally awesome to see.  I spent many wonderful hours riding it as a child.

Several of my cousins and I rode it about ten years ago to see if it was still as wonderful as we remembered it.  Although quite spectacular, it was a lot slower than we remembered.  I guess becoming “grown up” takes some of the fun out of things we remember from childhood.

I really would like to take my two grandsons for a ride on it.  There are only a few left in the world that are the original size and beauty of our carousel. I hope one day to be able to ride with them on it and see the wonder and joy that they will have from it.

I have only one problem with this idea………MS has taken my sense of balance away and, although quite tame compared to bronco riding, it might be more than I can handle.  I can become dizzy and off-balance sitting in a chair, walking across the floor, and sometimes lying in bed.  There is no warning before this happens, so no preparation can be made to stop it ahead of time. 

I really do want to ride it again……..but it sure would be  embarrassing if “grandma” fell off a rabbit in the middle of the ride!

Multitasking

When I worked at a law firm years ago, we were expected to be able to do several jobs.  We had to take diction, type, answer phones, interview clients, prepare reports, file and be the receptionist, among other things.  Often I listened to dictation in one ear and typed while answering the telephone.  We often talked with each other while typing.  We were multitaskers before there was such a thing.

I remember listening to music or watching television while I did my homework.  For some reason, it seemed like I retained my lessons better when I had to concentrate on them with a distraction in the background. 

We have all performed several tasks while driving, many of them illegal or dangerous.  Most of us listen to the radio or CDs while driving.  Many people talk on the cell phone while driving.  Some men shave, women put on makeup and I have even seen people trying to read the newspaper while driving.

Multitasking has become common to each of us.  Many jobs require the capability of doing several things at once.  Although it has been a common practice for many years, it now has a name.

It used to come easy to me to do several things at once.  I often would get bored cooking without watching television or listening to music while I was doing so.  Now, I am lucky to do one thing at the time.

Although MS affects everyone differently, one thing seems to be pretty common with all of us……..our brains don’t function like they once did.  It is not the normal aging process that everyone experiences but the sudden onset of “scrambled” brains.  Thoughts that should go from beginning to end get all mixed up with all kinds of other things that have nothing to do with what you were trying to think through.  It is so very frustrating and the reason that many MS patients have to have care givers to take care of their normal household chores and financial matters.

He has the whole world in His hands; He keeps the stars and planets in line, handles the weather, answers our prayers, and a million other things that have to be done on a daily basis.  I guess, if we really think about it, God is the ultimate multitasker!

Let Go!

When I was young, one of my cousins lived next to the schoolyard.  We would go over and play on the monkey bars, slides, teeter-totter and such.  Most of the time, we had the whole place to ourselves. It was a wonderful time. 

I have always been afraid of heights.  We would climb up the slide and it was everything I could do to let go and slide down.  We would climb up the monkey bars and hang by our arms and swing.  I would only be about a foot off the ground, but it took all my courage to let go and fall to the ground.  The teeter-totter and merry-go-round were a piece of cake!

Learning to ride a bike was a challenge.  All the other kids were riding along and I was still dragging my feet and balancing that way.  It was hard to let go of that safety net and learn to ride on my own.

When I was older and my kids starting trying to walk, it was hard to let go and allow them to learn.  I hated them tumbling over, although they usually did not get hurt.  They were ready to walk, but I was still holding on.

Now that I am older, it is still hard to let go.  Most of us have spent most of our lives dreaming about the things we want to do and how we want our lives be as we grow older.  I had great dreams of spending my senior years sitting out on the patio, reading a book and drinking coffee.  Traveling around the country and seeing new things was also high on my list of things to do.  Making crafts, crocheting and generally enjoying life was the way I saw my older years.

Now that MS has taken a lot of my mobility, thought process and ability to perform simple tasks with my hands, my priorities have had to change.  Maybe that is a good thing.  Maybe I had too high of a “me” goal without thinking it through. 

A lot of my time is spent on the computer.  I can type at my own pace.  I can look things up and study them at my own pace.  Although it is not the pace I would choose, it is still enjoyable and I get a lot of pleasure from it. 

I have “met” so many wonderful “friends” on the MS sites, Facebook and referrals from other friends.  My world has really opened up more than I had ever dreamed it could.  I think I am finally ready to “Let Go” of my old dreams and start dreaming some new ones! J

I Want to Do It MYSELF!

When we were little, our parents taught us how to tie our shoes, button our shirts, comb our hair and brush our teeth.  It was an exciting time of learning to do “grown up” things.  Besides playing, it was the most important part of our day.

As we got older, we often wished we had someone to take on some of the chores that were a part of our daily routine.  Someone to wash the dishes, make up the beds, sweep and mop the floors and dust the furniture would have really been nice.

My husband looks after me like a baby.  As I have gotten less and less able to do things for myself, he does them.  Many times I can’t button my shirt or walk across the floor, so he helps me.  He helps me in and out of the shower, holding me steady while I dry off and bringing my clothes to me as I sit on the chair.  It is very sweet, but something I really wish he did not have to do.

He is a very sweet, loving person and does not seem to mind doing these things for me.  I DO mind him doing them.  Not HIM doing them, just having to have someone do them in general.  I know the Bible says once a man, twice a child.  I guess I just didn’t think my second childhood would come so quickly! 

I have a cane that really comes in handy walking in open spaces.  In the house or a room with walls or furniture where I can reach them and can balance myself, I do fine.  Without those aids, I wobble and tend to fall.  My husband holds my hand most places we go. I like him doing that much better than holding my cane!

Being independent is one of the most precious things we accomplish as we grow up.  Getting out on our own and having our own personality within our surroundings and friends.  Losing that is hard to take.  We have to adjust to how someone else wants things done or do what they want to do.  It takes a toll on our self-esteem and makes it hard to want to do anything sometimes.

Some days, being dependent on others is OK.  We adjust and try to make the best of it.  Other days, I want to stomp my foot like a two year old and shout “I wanna do it myself!” ;)

Gold and Purple Beads

If you have never been to Mardi Gras, you have missed something really unique.  Every part of the world has its own special event, culture or something that makes it special.  The Gulf Coast has Mardi Gras. Mardi Gras, which means Fat Tuesday, is held on the Tuesday before Ash Wednesday. The Mardi Gras celebration usually lasts from three to ten days before that time.  It is a series of parades, parties and balls.  Most people dress up in costumes ranging from skeletons to royalty. The food in that area is a wonderful thing in itself.  Although there are usually quite a few people who “party” too much and get into trouble, there have been very few murders and extremely violent occurrences. Considering the number of people who swarm into the cities who participate, the drinking and partying involved and the laxity of law enforcement at that time, I think it is surprising to know this.

Having lived on the Gulf Coast for around twenty years, I had the privilege of witnessing quite a few parades and going to parties.  It was so special to watch the faces of the children as they would reach up to catch doubloons, necklaces, Moon Pies and other treats that the people on the floats would throw down to them.  Most of the people are happy and it is usually a joyous time for all.

Most of us with MS are stuck in a position that keeps us from enjoying many of the things that have been a part of our lives and gave us fulfillment.  Most of us will only get worse as time goes by. Although, as a whole, we stay upbeat and happy, there are times I think most of us would like to be in a fantasy world for a while and able to do some of the things we once took for granted.

It is nice to “be a fairy princess” or some other mystical character for a while.  Although Mardi Gras only happens in some areas of the country, we can live it in our minds.  A little bit of happiness goes a long way sometimes.  Besides, those gold and purple bead necklaces look really spiffy!

Read The Label!

Years ago the doctor prescribed Sinemet for me.  It was horrible!  It helped me sleep and rest a little, but the side effects were terrible.  Some of the ones listed on the sheet were: hives; difficulty breathing; swelling of the face, lips, tongue or throat; tremors; fever; uneven or rapid heartbeat; seizure; severe nausea; hallucinations, just to name a few.  I had the severe nausea and vomiting…….BIG time!

The label said that the medication could be taken with or without food.  The first time I took it, I did not eat before I did.  Huge mistake!  I was nauseated, vomited and had the dry heaves for over an hour.

The next time I took it, I ate a few crackers beforehand.  That helped a little, but not much.  The next time I took it, I ate half a sandwich.  This helped quite a bit and I started eating a substantial amount before taking the medication.  Since this was taken at bedtime, I had to be sure and not eat a large dinner so I would be able to eat at that time.

I took this medication for several years.  During this time, no matter what I ate, I would still have severe vomiting and dry heaves several times a month, sometimes as often as once a week.  When Requip was put on the market and my doctor prescribed it for me, it was a wonderful relief.  This medication can be taken without food with no nauseating effects from it.  I am very happy with this!

Unfortunately, this too has a lot of the same side effects as the Sinemet, and most other medications.  Those of us with MS don’t need any help with symptoms, just some relief!

I have several prescription drugs on the shelf that have never been opened.  I take a handful of drugs in the morning and a handful at night.  I don’t feel that I need any more drugs unless they promise to work wonders with my problems.  None of them do.

There are many public health ads and ads paid for by law firms about health risks and problems with different medications.  Most of them either say quit taking them, or call our firm to join a lawsuit against the manufacturer.

There are several of these put out by law firms that I really get a chuckle out of.  They state that if you or your loved ones have taken such and such a drug and had the following side effects to please call them and see if you qualify to get compensated for your problems.

I really need to take that 800 number down the next time I see that airing.  One of the side effects is death and I want to make sure I call them if one of these drugs kill me!

A Little Sleep Won’t Do Ya!

• According to the National Sleep Foundation, an adult needs between 7-9 hours of sleep each night to be fully functional and alert.  A person who does not get enough sleep has a greater risk for the following:  increased risk of motor vehicle accident; a greater likelihood of being obese; increased risk of diabetes and heart problems; increased risk for psychiatric conditions including depression and substance abuse; and a decreased ability to pay attention, react to signals or remember new information. 

• Most of us with MS, and many without MS, know these statistics very well.  We live them every day.  Most of us are on medication to help us sleep, which works sometimes and doesn’t work a lot of times.

If you have never had the problem of not sleeping, thank God!  If you do, you have a lot of company.  It is a very irritating condition that causes a lot of problems, as stated above.  It also works against most of the problems that MS patients already face.

Most of us MSers already have a problem remembering things and walking without falling.  Sleep deprivation triples those conditions.  We also do not need any help with depression, as that is pretty prevalent on its own!  Our reaction times are already slow and needs no help.  I think most of us try to pay attention, it is just that things don’t always “compute” in our brains so it seems like we aren’t paying attention when we really are trying to.

One of the problems with not sleeping is that you have so much quiet time for thoughts to run rampant in your brain.  I think of all the things I wish I could still do and all the things I want to do and hope I will be able to.  I worry about getting to the point where my husband will have even more to do as I can do less, etc.  Quiet time thinking is NOT a good thing!

I remember people used to tell you to count sheep and it would bore you to sleep.  I have counted so many sheep I didn’t know what the number was after that!  I have tried butterflies, dogs, cats and everything else I could think of to count.  Nothing worked.

I remember reading that Johnny Carson only slept about four hours each night because his insomnia was so bad.  I guess he had a lot of time to work up his jokes……….no wonder he was so funny!

The Treadmill (A Fairy Tale)

Once upon a time there was a treadmill.  It was a very nice one.  If used properly, it would help people maintain their weight and keep them in good physical condition.

During this time, a woman (me!) was told by her doctor that she had MS.  The doctor advised that he would start her on some medication and that it would be good if she could try to stay as physically active as possible.

The woman (again, me) talked this over with her husband and they decided on getting her a treadmill (star of the story!).  The woman was unable to walk in her neighborhood because of uneven sidewalks and such, so this seemed like the best choice for her to try and get some exercise.

The couple went to the store and saw a nice treadmill, bought it and brought it home.  It looked nice in the room where the woman’s computer was set up and the couple was very happy.

At first, the woman was able to walk on the treadmill a little and was very happy with it.  But, as time went on, she became unable to steady herself enough while walking to risk walking on the treadmill and falling onto the floor.  The woman was very sad.  She really liked her treadmill.

The woman’s mean old mother (self-explanatory!) was 83.  Two or three times a week, she would get on the treadmill and walk a couple of minutes.  She would tell the woman (still me!) about doctor whoever saying that if one would get a little exercise every day, eat such and such, and get plenty of rest, they would have a long life.  The woman had to listen to this, but was skeptical about the advice.  (Luke 12:22 – Then Jesus said to his disciples: “Therefore I tell you, do not worry about your life, what you will eat; or about your body, what you will wear.”  Matthew 6:27 – “And which of you by being worried can add a single hour to his life?”)

The woman thought about selling or giving the treadmill away, but her husband advised her not to.  He said that maybe one day she would be better and be able to use it.  It would be a shame to get rid of it and then need it.  The woman thought it over and agreed.

The treadmill was very happy with the way the story was going.  It did not have to do much work and got to sit in front of the woman’s desk and have company.

So the woman and the treadmill lived happily ever after………..or at least as much as was possible for the moment! J

Gimme A Little Hug……!

It is really wonderful how my MS family shares their thoughts on their symptoms and tries to help with someone else’s symptoms.  One of the things we all have in common is that we have a lot of things going on with us that the medical profession does not recognize as existing.

Only recently, say the last 10 years, have doctors acknowledged the fact that the majority of MS patients deal with pain every day.  For years, pain was not considered an MS symptom.

One of the common types of pain is a feeling of severe burns.  My back often feels like someone has scraped it with glass until it is raw and then rubbed salt or alcohol on it.  I guess another description would be like having a severe sunburn. 

When my back is burning, clothes are nearly impossible to wear.  If someone touches me, tears immediately form in my eyes.  The air moving in the room hurts.  It is like having shingles.  There is nothing that comes near the area that doesn’t hurt.

Since MS is a neurological disease, ointments, pain killers and such often do not help. As one internet site put it, “it is all in your head and nothing we give you will help very much.” Gee thanks!

Many MS patients also have fibromyalgia.  Talk about adding insult to injury!  When my back is burning and nothing will stop it, I think of those poor people who deal with this everyday and my heart goes out to them.  And even more than that, they often deal with this feeling all over their body.

One of the things that most of us try to do on our MS site is lift each other up.  I know that there are many chronic ailments that people have, not just MS.  But MS is what I am dealing with and can only speak from experience on.  When we offer each other comfort and “hugs”, it means a lot.  Dealing with pain and disabilities on a daily basis takes a lot out of one physically and mentally.

My mental state, as I’ve said before, comes and goes!  Some days I am dealing fine while other days I cry at little to nothing.  Since MS is a brain thing, I guess my brain just gets enough some times and has a meltdown!

The problem with this burning back deal is that it makes me depressed and I would love to be held and coddled.  Since at that time it is impossible to be held, I just have to do without that comfort.  What a bummer!  J

I Can See Clearly Now

That is actually a joke!  Optic neuritis is the inflammation of the optic nerve, the nerve that transmits light and visual images to the brain and is responsible for vision.  According to the National Multiple Sclerosis Society, 55% of people with MS will have an episode of optic neuritis. The symptoms of optic neuritis are the acute onset of any of the following: Blurred vision, Graying of vision, Blindness in one eye (rarely both).  Double vision, uncontrolled eye movements, and temporary blindness are also eye problems that most MS patients have one or all of from time to time. The sudden onset of double vision, poor contrast, eye pain, or heavy blurring can be frightening. 

Double vision may increase with fatigue or overuse of the eyes.  Blurred vision or Uthoff’s Symptom is usually the result of an MS patient getting overheated.  Dimmed or reduced color vision can be caused by optic neuritis, Uthoff’s Symptom or be heat related. Colors can seem washed out or faded, depth perception is off, and things are viewed as looking at a negative rather than a sharp picture.

Vision problems cause a lot of MS patients to fall.  Walking across the floor is hard because at times, the floor seems to be like waves and it is hard to decide where to step.  Going up and down an elevated walkway is another problem.  My body tells me I am going up, but looking at the ground my eyes tell me I am going down or walking on ripples. 

Reading is hard because the words tend to dance around the page at times.  Watching TV can be a challenge for the same reason.  Trying to cook often causes a problem because you cannot “see” the true color or shape of the foods you are trying to prepare.  It is hard to tell when to turn a food over, and often is hard to do so because the pan seems to be moving.

I say all this to try and get some people to realize that “you don’t look sick” is a cruel thing to say to MS patients, as well as many other people going through diseases and problems you can’t see. 

Many mentally ill patients are as sick as anyone, but you can’t see it to look at them.  There are not large swollen places, rashes, cuts and other outward appearances of a problem.

Many times one of us may have to reach out and steady ourselves by holding your hand or arm.  We are not trying to be rude or fresh with you.  It just seems better to us to try and steady ourselves rather than fall and possibly take you with us in doing so.

I think I will put on my rose-colored glasses.  It’s nice to think the world is a good place and be happy and carefree.  Who knows……. if enough of us wear them, it might catch on!!!!!!!!! :)

We Are Family!!

Everyone has a family……..some by birth, some by friendship.  Unfortunately, a lot of us have birth family members that do not care and love us nearly as much as our friend family members do.

I am blessed to be part of an MS family.  They are a wonderful, special and very loving group of people.  We share a lot of tears, laughs, trials and accomplishments with each other.  We hold each other up because we don’t have to explain ourselves to each other……we are all going through basically the same thing.

Unfortunately, a lot of our families by birth are not as caring and loving.  I have read so many stories that my MS family is going through that are heart-breaking and caused by parents, siblings and other family members that, in a perfect world, are supposed to stand by and help.  Often they only criticize and abuse.

Many spouses of MS patients are in that category also.  So many MS patients have been abandoned, abused, neglected and mistreated.  A lot of them have gone through horrendous times and none of it has anything to do with something they could have prevented.  It is so sad.

The flip side of this are the many spouses, parents and other birth relatives that love, cherish and give their all to help in any way possible to make life easier for the person in their lives with MS.  There are many of these stories also. 

I am blessed with a wonderful husband and family.  He takes care of me like a baby and goes to great lengths to see that I am safe, secure and loved.  Most of my family is in this category.  My Mother is not in this group.  She is a story unto herself, but I will not go into that at this time.

I want to make this a happy posting………..wishing all a very Happy Valentine’s Day……..and hoping that you are loved and cherished no matter what your situation………

I wish a special Happy Valentine’s Day to my MS family and hope that this will be a pain free day where you are loved, cherished and happy!!

Dear John

Most of us have seen the ads on TV for alerts that people use when they fall.  Usually it shows an elderly person who falls and can’t get up.  Those devises are really good if you don’t knock yourself out and can use them.

I would hate to be one of the people who monitor calls from MS patients….they would be answering calls 24/7!  Most of us with MS have had more than our share of falls.  Thankfully, most of them are not serious.  Many times when I start to fall I can catch myself and don’t get hurt.  Other times I end up with bumps and bruises, although I did break my leg once.

There are a lot of comedy routines where people trip or fall and they are usually very funny.  I guess it is all in how you look at it.  As I began to fall more, they don’t seem as comical as they once did.

I admire football players, wrestlers and other athletes who hit the floor and get up running.  I can’t imagine hitting as hard as they do and not get hurt.  It would be good if the methods they use to learn to fall could be taught to those of us with MS.

I’ve noticed on different websites, such as Facebook and Youtube, that there are a lot of people making fun of the fact that people need help when they fall.  There are several parodies of the ads I mentioned above.  Most of them are younger people and people who are healthy and think that none of these things can happen to them.  A part of me gets angry enough to wish they could experience this at least once, but most of me hopes that they never do.  I would not want anyone to have MS no matter how mean and cruel they are.

All of us have watched movies where the girl or guy is in love with someone and that someone doesn’t love them.  Sometimes, the other person writes them a “Dear John” letter.  The letter basically tells them that they don’t want to carry on a relationship with them and this is goodbye.

I am thinking of writing one.  It will be to the floors.  I am telling them that I am really disgusted with our “up close and personal relationship” and am calling it quits………….I hope they get the message!!!! J

The Handwriting on the Wall

When we are told that we have a disease, most of us panic.  Doom and gloom are our first thoughts.  We think of all the people we have known or things we have read about that particular disease and only think the worst will happen to us.

When I first learned that I have MS, I was in that category.  My outward appearance didn’t change, but inside I was in turmoil.  All I could think of was being in a wheelchair, unable to feed myself or do any of the things we consider “normal”.  If a doctor told you you had cancer, the first thought would be that a painful death was in your future.  Once you had time to think about it and learn more about it, you might calm down and have a more reasonable outlook.  This is the way a MS diagnosis affects most people.

Although most MS patients lead a fairly good life, many are in terrible pain and crippled from the disease.   Normal life is no longer in the picture, but most of us are able to still enjoy the lives we have.  Only when you let yourself totally give in to a pity party do you let it defeat you.

I remember really hating the chore of having to wash dishes when I was young.  (We did not have the luxury of a dishwasher back then!)  It seemed like no matter how often you washed them, there was always more to wash!  It was a never-ending cycle that I truly dreaded.

As more and more of the chores I once did are taken over by my husband, I long to do them.  I guess that is part of the “grass looks greener” saying.  You always want things you can’t have and fail to appreciate the ones you do.

Which brings me to the handwriting thing.  My handwriting was NEVER pretty, but I loved writing.  When I was young, I wrote short stories, poems and such all the time.  We didn’t have computers and few people had typewriters, so it was all done by hand.  I loved writing and receiving letters and cards.  I used to put notes all over the place so I would not forget a doctor appointment, grocery item or such that I needed to remember. 

I don’t handwrite much anymore.  I have a hard time holding a pen and when I do write, even the most expert code breaker could not decipher it.  But every now and then I do still try to write.  It makes a lovely mess.  Maybe I am the next Picasso in the making??!!!

BZZZZZZZZZZZZZZZZZZZZZ

It’s getting close to the time of year when the bees, butterflies, ants and other insects start flittering around.  Since winter has seemed to bypass us this year, these critters have already started making their way back to our area.

Unfortunately, I am buzzing already.  Not that I ever really stop, it just gets a little less noticeable some days.  It is very annoying and hard to explain.

Everyone has had experiences with static electricity.  One can be just going about their normal activity, reach down to touch something, and get shocked.  It is not a pleasant feeling.  This buzzing feels a lot like that, only all over your body.

Buzzing, as MSers call it, can be up and down your legs, your fingertips to shoulders, face, back or anywhere it decides to set up shop.  Sometimes it is so strong that your clothes “shock” you, touching something shocks you and brushing up against something shocks you.  Otherwise, it is like a current running along your body. 

There are medications that the doctors prescribe (I almost said GIVE, but we all know that is NOT true!) for it.  It may calm it down a little, but it rarely goes completely away.  Sleeping is difficult because your face against the pillow makes it stronger.  Many MS patients sleep with a pillow between their legs because having your legs touch each other is so shocking it is almost unbearable.  Putting your hand under your face is a no-no.  It causes the shocks to be twice as strong both in your face and your hand. 

Buzzing is not a dangerous condition and is often ignored by doctors as just one of those things that goes with MS.  MS is a nerve disease.  When your nerves are acting up, it GETS ON YOUR NERVES!  Most MS patients are on some form of antidepressant or other type of medication for their nerves.  Anyone who has something that causes them undue stress daily, knows that this is a necessary evil that goes with the condition.

Most of us like to think that we are strong individuals who can handle what comes along.  We often find out that this is not the case.  I was ashamed/afraid of starting some of these medications, but have learned that they help and there are so many walking in these same shoes. 

If you have something like MS, support groups, websites, facebook sites and such are such a comfort and help.  Most of the people on them are friendly, helpful and have advise that is worth looking into.  I have met some of my best friends this way and thank God for every one of them.

I am thinking of contacting The Justice League and see if they need any help.  I’ve always wanted to meet Superman, Batman and the rest.  Maybe I could be Shocker Woman………sounds good to me!!!

Vampires vs Werewolves

Every one of us has a prejudice about something.  Some people don’t like certain people.  Some people hate vegetables.  Some people are anti-religion.  All of us have certain things we group into a category and decide to dislike the whole bunch because of it.

As I get older, I am getting more and more tolerant of things.  For example, I used to have favorite music and dislike all the rest.  As I have listened to a wider range of music, I find I like a little something in all those varieties.  I have learned to try more types of food, entertainment, movies and other things.  Variety is the spice of life, so they say, and we miss out on a lot of enjoyment and learning experiences when we shut our minds to only one thing in each category of life.

I think a lot of people dislike reading about diseases and such out of fear.  When you tell someone you have MS (or any disease or illness), they nod, make a quick comment, and walk away from you.  Most of us don’t volunteer that information, but when it comes up, we are sometimes shunned.

The first thing most of us want to say is “It’s not catching!”  You cannot be exposed to MS and a few days, months or years, develop it.  The same is true with cancer, diabetes, ALS and other diseases. Our prejudices of “disease” have carried us into a world where we are afraid of everything and unable to learn about them and maybe help someone going through one of them. 

The news is constantly full of ways to avoid getting sick, what to do if you do, and all the treatments available to help you. Every one of those treatments always comes with a long list of possible side effects, some of which are deadly.

The world has become a place where polls, lists and graphs are a way of life.  The problem with that is, everything does not always fit into the same category all the time.  What is right one day, is often wrong the next.  The positive or negative effects of coffee, milk, eggs, etc are a good example of that.  One day they are the best thing in the world for you, the next, they will cause you all kinds of problems.

I guess my point is that MS has so many different faces that it cannot be put into any certain category as far as symptoms are concerned.  Some people have walking problems; some cannot walk at all.  Some people have cognitive problems; others cannot talk.  Some people are so fatigued they cannot put their clothes on without having to rest, while others work full time but are constantly worn out and stay on large doses of drugs.  Some people are in constant pain, while others have no pain at all.  And to make it even harder to understand, each of these things can change on a day to day basis.

I love watching movies and reading books.  Mostly mysteries, but I try different kinds and sometimes are surprised at how well the choice turns out.  I am not a fan of the latest fad of vampire movies that is so popular, but for people that love them, I think it is great.  Although I don’t care for them, if you come to my house and you smell something odd, don’t be alarmed.  I wear a garlic necklace just in case I’m wrong about these things!

Not Enough Players On The Team!

I love football.  As all who do, I have a favorite team……my team WAS NOT in the Super Bowl! 

A football team consists of offensive and defensive players.  Each set of players have specific goals.  The offensive players want to score touchdowns and the defensive players want to keep the other side from scoring touchdowns.  When the team is successful at doing this, they win the game.

I was thinking that having MS is like having a football team that is completely unorganized.  My offensive and defensive players have no clue as to what they are supposed to be doing.

The offensive players in our bodies are supposed to keep us up and motivated.  They help us walk, talk, think and go about our daily lives.  With MS, the players just wander around the field and forget what they are doing.  Instead of helping us walk, they sit on the sideline and drink Gatorade and tell jokes. 

The defensive players in our bodies are supposed to keep us from falling, forgetting what we are doing, helping us get words out correctly and live a normal life.  With MS, the players are standing around watching the ball get caught by the other team and score touchdowns.  They don’t even try to intercept the ball or tackle the other players.  They are looking at the fans and waving to their families.

Many diseases resemble this description.  It is not only MS that totally disrupts a normal life.  But it is MS that I am dealing with and can only speak from experience on.  My “team” is totally unorganized and tends to not care what is happening.  The players don’t practice and don’t have a clue as to what they are supposed to be doing on the playing field.

With MS, as with many other diseases, the doctors who treat us often dismiss things that we go through because it is “not in the play book”.  There are a certain set of symptoms and problems that are THE NORM and nothing else will penetrate their brains as having anything to do with our disease.  It is very frustrating to try and explain something to a doctor that has a closed mind.  Most of them do, and miss the opportunity to really treat and help  their patients because of this.

Anyone who has ever had a cold, to having cancer, know that there are more “plays” in the game than the ones set down on paper.  Each of us is different and our bodies react differently to whatever happens to it.  My “players” may go one direction while your “players” may take off in an entirely different one.

I hope one day the medical profession will come to realize that everything that happens to someone is not just “in their mind” but is being lived out every day in their bodies.  I also hope that all of us reading and going through this will live to see that day.

Until then, I need to get my players back on the practice field.  They have really let me down lately.  They need more discipline and direction.  I am hoping to get them into the next Super Bowl……. Are you listening Green Bay Packers???!!!!!!!!! J

This and That

I remember when I was young and we used to walk the streets downtown shopping.  Often we would cross the street catty-corner, or Jaywalk.  I don’t even know if that is still against the law, or even done anymore.  Malls have become so popular that most downtown stores have closed.  When I was young, though, it was a big deal.

There were no malls when I was a child.  You parked your car in a parking space as close as possible to the stores you wanted to shop in.  Parking meter times had to be closely monitored.  If your meter’s time ran out, you got a ticket.  If it rained, you got wet. 

There were no handicap parking spaces, ramps or wide doors to accommodate wheelchairs.  Men opened doors for women and women smiled and said thank you.  Sales clerks were friendly and helpful, or they looked for another job.  Stores were clean and neat.  If someone started cussing, fussing or making a scene, they were escorted out of the store or the police were called.

Manners and politeness seem to have gone the way of the Zoot Suit and crinoline skirts.  It has been a long time since I was at a store, at work, a restaurant or any place in the public that someone wasn’t using language that was not appropriate or being rude to people around them.  I remember that my Daddy always said that people cursed because they had a small vocabulary.  I think that is true.

Maybe I’m old fashioned, but I like the old ways.  The times when people helped each other, were kind to each other and went out of their way to see that others were cared for.  We have gotten so used to trying to cram a lot of things into our lives that we have forgotten how to enjoy them.  We can’t “savor the moment” for trying to rush to the next moment.  Unfortunately, many people get lost in the shuffle and forgotten in that kind of world. 

The handicap ramps and wide doors are nice for those of us that sometimes need them.  Handicap parking spaces are nice, also.  But the world went many years without them and did just fine.  People took the time to help each other instead of fussing about spending money to make sure these things were done.

Those of us that get “those” looks and feel people’s mood change when we are present, know how much the kinder, nicer world is missed.  I don’t want to be treated any differently than anyone else.  I don’t want special attention or to have to have special accommodations.  But such is life for me and many others at this time.  It is not something we asked for or wanted.  It would be a blessing to be lost in the crowd instead of standing out in the crowd.

Just a little this and that for those of us that remember “the good old days”……………….. and poodle skirts and black and white saddle oxfords and long “hippie” dresses…………J

It Don't Come Easy!!

Believe it or not, writing “don’t come easy”.  Many of the thoughts that run through my head are not at a time I have a way to put them down.  By the time I get to a place I can, the thought has run right on through and out the other side.

As we get older, thoughts tend to be fleeting.  If you don’t say something when you think of it, it is gone.  MS doesn’t help.  Part of the frustration with MS is that it short-circuits your brain.  Most of us don’t have enough burners working for any of them to be put out!  Aging and MS definitely work against having any type of outstanding memory and it makes most conversations and every day chores frustrating.

Many people don’t consider it a problem for us MSers.  They contribute it to aging and just shrug it off.  Aging comes slowly; MS hits you like a ton of bricks.  One day you are going along in life OK; the next you aren’t.  Most things can be handled if they come on gradually.  MS does not do this.  Picture the difference in someone sideswiping you and someone hitting you head on. It makes a difference.

The MS site suggests doing crossword puzzles, playing trivia games and such to try and keep our minds as active as possible.  The only problem I find with that is, some days I can do fairly well with them.  Other days, I barely know what day it is.  Frustration causes stress which causes MS symptoms to be worse.  No wonder many of my MS “family” get so depressed and frustrated.  Most doctors have no clue as to what we are going through.  If it isn’t “in the book” so to speak, then doctors don’t feel it exists.

Many people teach/preach that those of us with afflictions have them because of our sins.  Although there is a certain validity to that, there is also the argument that many have seen terrible things happen in their lives, and to them, that had nothing to do with their sins.  Job is a good case in point.  Although we are all guilty and sinful, those who suffer the most in this life are often the best people we know. 

Most of us are decent people who try our best each day to do what we can to make the world a better place.  Sometimes, it seems like we are just spinning our wheels and getting no place.  All we can do is hang in there and keep trying! With apologies to Ringo Starr, it really “don’t come easy”!