Just Thoughts………..

It is a rainy, sometimes stormy, day today.  I was watching the rain and thinking back to when I started writing this blog.  It has helped me in many ways, getting thoughts out of my head that ramble around and hopefully helping those without MS to understand it a little better.

When I first started this blog, I debated on what to call it.  I went on a lot of sites and looked at other blogs to see why each was named what it was.  There was a lot of information and it was a hard decision to make.

I call this PasstheMSplease for several reasons.  Although living with MS day after day is hard to deal with, there are other things I would not want to trade it for.

Having to deal with the death of a loved one is much harder than MS.  Although the pain does diminish with time, it is always there and the hole that is left by that pain never ceases.  MS is painful, but not as painful as that.

The breakup of a marriage or friendship is hard.  Having gone through both, I am not sure that MS is that hard.  Even if a marriage or friendship is bad, the pain runs deep and is hard to recover from.  There is always that feeling of failure to live with also.  At least with MS, we know it is not our fault we have it, and no matter what we have done in our lives, we could not have prevented having it.

Diseases, such as cancer, ALS, kidney failure, heart disease, and many more, are terrible to live with.  MS fits in with that group.  To sit here and say I would trade MS for any of them would be ridiculous.  Each person that has a debilitating disease feels that they are struggling and dealing with their problems the best way they can.  Each feels that anything added to their daily struggles would break them.  To think “trading off” with another set of problems would be any better is stupid.

When I named this blog I was thinking of being at a family get-together with a table full of food.  There were so many dishes to choose from and a lot of people passing these around to each other.  Every now and then you want something that is on the other end of the table, so you ask someone to pass it down to you.  So, as in “pass the salt, please”, pass the MS please (passtheMSplease) was born.

I hope you enjoy reading this blog as much as I do writing it and will send me your feedback or any ideas you may have for me to include in a future writing.  You are all very special to me and I truly appreciate the love and support I have received since starting this.  God Bless!!!

A Piece of the Pie

I am a dessert lover.  I don’t want dessert with each meal, but when I do crave one, nothing else will satisfy that need. My favorite is chocolate pie, not that I turn down cakes, cookies or other pies.

MS reminds me of a pie being cut.  There are all these little pieces that go together to make a whole.  Each piece is only a small part of the whole picture. 

Most people who don’t know much about MS consider it a disease that cripples.  This is true, but not always so.  Unfortunately, many that have MS end up in a wheelchair and need around the clock care.  Some cannot feed themselves, dress themselves or do anything with their arms and legs.  This is the extreme side of MS.

Many with MS carry on their work life, home life and social life with few adjustments.  They many have to take medication for pain or sleep, but can function fairly normal in the outside world.

Most of us fit in the middle of all this.  We deal with cognition problems, walking issues, pain, sleeplessness, buzzing, speech and many more symptoms.  Each symptom causes problems with being able to function properly in everyday life.  Although most of us will not be totally dependent on someone else to take care of us, most of us do have to have help with our everyday lives.

 We all like to think that we have our lives together in an orderly fashion.  With MS, we learn that having pieces all jumbled around out of order is the norm for us.  What may seem like a very disorganized way of doing something may be the only way that we can get it done. 

All in all, life is good.  No matter what goes wrong, it usually straightens out after a while.  We just have to be patient and wait on the good part to work its way back around to us.  Each piece of us has its own place and hopefully will get back where it belongs and be a help to us rather than a hindrance.

While I’m waiting on all my little pieces to get back in order, I think I would like my piece of chocolate pie please……………with a lot of whipped cream on top!

45 on a 33

I don’t know how many of you remember the old 45 records and 33 records.  They were the CDs of my younger years.  The 45 records were little things, about the size of a salad plate and the 33 records were platter size.  If you played a 45 record on 33 speed, it sounded like someone on an LSD trip.  (I guess, for those of you who are younger, think of what it is like to try to watch a movie on a tape that has stretched and drags.)

People have tried to interpret the words to songs on records that were not clear for years.  One of the funniest parts of “Jumpin Jack Flash” is Whoopi Goldberg trying to figure out the words to the song by the Rolling Stones.  One of the most bizarre incidents of this was when Charles Manson tried to claim that he heard certain things in the Beatles’ song “Revolution” that made him try to start a race war.  He did manage to get his clan to kill several people.  It was a terrible, tragic event.

I had an event last week that made me think about being on the wrong speed.  I was reading a book when I realized I was just staring at the page and not comprehending the words.  My eyes were blurred and when I tried to put the book down, it was like I was moving in slow motion. 

When I stood up, the same feeling of being on the wrong speed made me walk slowly (which I do anyway) and in a dream-type state.  I tried to say something to my husband and the words were slurred and hard to get out.  It really scared me.  My first thought was that I was having a stroke.

Although this lasted no more than half an hour, it really made me worry.  I have had quite a few seizures and often came out of them with slow speech.  I have not had this feeling when not having a seizure.

According to the National MS Society, speech disorders are fairly common in MS. Speech patterns are controlled by many areas in the brain, especially the brainstem. Lesions (damaged areas) in different parts of the brain can cause several types of changes in normal speech patterns. They range from mild difficulties to severe problems that make it difficult to speak and be understood. Medically, speech disorders are called dysarthrias.  Slurring words and abnormally long pauses between syllables and words are common with this condition.  I guess we should be happy we can talk and be understood!

I hope this doesn’t happen again.  Maybe I will look on Amazon and see if there is an old stereo for sale in reasonably good condition.  That way if it does happen, I can flip the speed over to the right one and get myself back in gear!

Over the River and Through the Woods….

When we’re young, there are certain ages that we look forward to reaching.  Most of us wanted to get to 13 and start our teenage years, or reaching 18 and being “adults”.  When I was young, everyone was anxious to reach 15 ½ years old.  When we became that age, we could take driver’s education.  It was such a thrill to get close to the time that we could try to get our license and be independent.  Everyone signed up for the class and looked forward to each Saturday morning going out with our instructor to learn to drive.

I miss that thrill.  I have not driven for almost 2 years.  There is a special kind of freedom knowing that you can go out, get in your car and travel someplace.  Having to have someone drive you every place you go is fine.  Being able to take yourself is so much better.

I think most people who see those of us with MS don’t realize the freedoms that we have to give up.  A lot of people love to be waited on.  It is a privilege that only the rich usually can afford.  They are the people who CHOOSE to give up these freedoms.  We have no choice in the matter.  It is a whole different thing to be able to choose giving up something and being forced to give up something.

Most of us get up each day and decide what we will spend our energy on.  Energy is something that is a rare commodity with MS so it has to be used wisely.  If the laundry needs done, we have to chose whether to do that or possibly cook a meal.  Doing both is usually out of the question.

My heart goes out to those who have MS and small children.  I don’t know how they keep up with the demands of taking care of them and still getting their own needs taken care of.  It has to be a struggle that is beyond my comprehension.

My husband takes on a lot of the burden of my care.  He helps me with my shower, brings me coffee in the mornings, takes care of the finances, helps me dress and a million other things…..including doing all the driving.  I appreciate his willingness and eagerness to do this.  I just wish he did not have to.

It would be nice if we could go back to the horse and buggy days.  Most people went the same places so often that if you got hurt or something, the horse could find its way home without any guidance.  Many of us with MS play Frontierville and other games on Facebook.  I have a horse that I ride around my homestead and use to visit my neighbors. It is fun to develop your homestead and interact with other people.  Unfortunately, for a lot of us, it is the only “mobility” we have each day. 

I really like my horse………it is a shame Thunder is not real.  I would love to ride around on him and have my independence back.  I think my pigtails and cowgirl outfit are neat!  If you get a chance, come on over and visit and we will ride around together!

No Pills, No Sleep!

My husband usually goes to bed several hours before I do each night.  Like most with MS, sleep is hard to come by and the longer I stay up, the better my odds are of going to sleep when I go to bed.

I usually spend that time reading and/or watching TV.  I have several medications that I take at night to help with pain, buzzing, sleeping and restless leg syndrome.  Without these, I don’t sleep……..period!

Most of my fellow MSers have the same problem with sleep.  Most of them take something to help with this problem.  Unfortunately, even with medication, we often don’t sleep.

According to the National Sleep Research Project, the record for the longest period without sleep is 18 days, 21 hours, 40 minutes during a rocking chair marathon. The record holder reported hallucinations, paranoia, blurred vision, slurred speech and memory and concentration lapses.  Uh, sound familiar MS family???!! 

Here is another one for you MSers: To drop off to sleep, we must cool off; body temperature and the brain's sleep-wake cycle are closely linked. That's why hot summer nights can cause a restless sleep.  We always knew heat was our enemy and now we have another reason to believe it!

Most of us try to take several naps during the day, but often have trouble doing so.  For some reason, MS and sleep do NOT equal!

My husband suggested this blog.  A couple of night ago, I went to bed and tossed and turned for almost two hours.  My legs were twisting and hurting, I was sweating and could not find a comfortable place on the bed.  After a while, I decided enough was enough and sat on the side of the bed and waited to get steady before I tried to get up.  This, of course, woke my husband.  He offered to get up with me and we went into the TV room to try and see if sitting up a while would help.  Glancing over at the lamp table we saw my nighttime pills.  I had not taken them.

In some ways, it was a relief to know that I had forgotten them.  At least there was hope in getting some sleep that night.  Sometimes we do the same things each day and take it for granted that we have done a certain action. 

So, I took my pills and we sat and talked a while.  When we went back to bed, I finally fell asleep.  It is good to know that some things DO work on a fairly regular basis……..although my brain is STILL not in that category!!!

A Daffodil Story

Unless something unforeseen arises, five days a week I write this blog.  On each of those mornings, my husband will go upstairs to his study and read it.  When he comes back downstairs I always asked him how it was.  “It was great,” he says.  “But you say that every morning,” I tell him.  “It is good every morning,” he replies.  “But would you tell me if it was stupid or didn’t make sense?” I ask him.  “Of course I would,” he replies. “But I think you could write about daffodils and it would be interesting because you always relate something routine to your problems with MS.”

So, here goes my blog on daffodils as related to MS: 

I love flowers, as do most people.  They come in so many shapes, colors and sizes that there is some kind for just about everyone.  Daffodils, also known as narcissus, are a spring flower native to Europe, North Africa and Asia. 

Like flowers, MS comes in many shapes and forms.  Each of us with MS has a variety of symptoms ranging from moderate to severe.  Some MSers become unable to walk or use their arms and hands and have to have someone to take care of them.  Others can function reasonably well and continue to work and take care of themselves with little problem.

Most of us fall into a middle of the road category.  We have trouble sleeping, extreme fatigue, pain, difficulty walking and other problems.  Each of these problems by themselves is difficult to deal with, but when you combine them with others, it makes for a hard time coping with every day activities.  Most of us try to take care of ourselves the best we can, but need help with a lot of routine chores.

I guess in some way we are like daffodils or other flowers.  Although on the outside we may look fine, on the inside we are struggling.  Many flowers are beautiful but dying inside as fall and winter approach.  Those of us with MS are always on the verge of a winter storm.

Flowers stand straight and tall in the spring and summer sun.  The rain makes them strong and they glow with health. Most of us with MS do our best to stand tall and try to put our best foot forward every day that we possibly can.  Unfortunately, the winter storm within us often makes us droop like a flower in the cold.

The good thing is, like flowers, we are residual and will bounce back at every opportunity and stand tall.  We try to have an outward shine even if our insides are more of a blizzard!  How was that for a daffodil story???

A Rose By Any Other Name

"A rose by any other name would smell as sweet" is a quotation from William Shakespeare's play Romeo and Juliet.   It means that the names of things do not matter, only what things are. I have an issue with that statement.

I was in a Lamaze class with ladies giving birth for the first time and some that had already given birth.  The instructor was a young lady that had never given birth.  This was obvious after a few classes.

In that class, the instructor told us that when we realized we were in labor to lay a certain way and to pant instead of holding our breath or breathing deep.  She said that we would know when we were starting the birthing process because we would start contractions.  One lady asked if she mean birth pains and she said no, that contractions were not pains.  Several in the class burst out laughing, me included.

For all you men reading this, or women who have not given birth, contractions and pains are one and the same.  There is no distinction between the two when you are experiencing them.  If you hurt your back, you often have spasms.  I think it safe to say that these things called spasms can also be categorized as pain.

I have the same issue with some of the symptoms those of us with MS have that are not considered pain by most doctors.  The electric shock/buzzing that most of us experience, the MS “hug”, muscle spasms and spasticity are just a few of the things that cause us pain that have only recently been acknowledged by some doctors and the National MS Society.  Until the last few years the Society and most doctors believed that MS was a debilitating disease that was without pain.

With the onset of some of these symptoms being recognized as “real pain”, the offering of more drugs and different types of tests have been developed.  It is wonderful to know that more and more people are listening to those of us that have this disease and not just taking for granted that textbooks have all the answers.

As far as pain in concerned, most people have experienced it in some form or the other.  I guess we could call it Sam, John, Lucy, Judy, George, Ruth……….or whatever…………but the feeling would still be the same!!!

The Heat Is On!!!

Like most people with MS, I am NOT at my best in the summer!  The heat totally drains me of any energy that I might have and causes me to be dizzy and nauseated.

I realize most people love the summer.  They like going to the beach, getting a tan and doing things outside in the warmth.  I used to enjoy all these things also, before my MS was in full swing.  Now, I can only look out the window and hope the air conditioner will keep me cool.

According to the National Geographic website, global warming, or climate change, is a subject that shows no sign of cooling down. The rate of warming is increasing. The 20th century's last two decades were the hottest in 400 years and possibly the warmest for several millennia, according to a number of climate studies. And the United Nations' Intergovernmental Panel on Climate Change (IPCC) reports that 11 of the past 12 years are among the dozen warmest since 1850.

I am not agreeing with, nor disputing any of the above statements.  (One question I always have, though, is “who was the person keeping those records 400 years or several millennia ago?”)  I do know that whether or not the world is getting increasingly warmer or not, I can’t do anything about it.  Whether scientists want to believe it or not, things like that are STILL in God’s Hands!

If it were up to me, it would not get any warmer than 60 degrees.  Beyond that, I start getting flush-faced and light-headed.  I guess it is a good thing I am not in control of the weather.  No matter what temperature I set it at, someone would not be happy.

One thing I do know, when it is cold, I can put more clothes on and get warm.  When it is hot, I can take everything off and still be hot! I just hope the a/c is in good working order…..either that or my husband had better start getting ready to move to Alaska!

A Little Hug Will Do Ya!

As most MSers, I have a lot of trouble sleeping.  So, I do a lot of channel surfing and reading. 

A couple of weeks ago as usual, there was very little on that I wanted to watch.  Flipping over to the movie channels, I found that Anaconda was on. Now don’t get me wrong – I am NOT a snake lover!  I am scared of them and do everything I can to make sure that our paths do not cross.  But this movie is fairly entertaining and silly enough not to scare me.

If you have not seen the movie, a HUGE Anaconda (not that they all aren’t huge!) wrecks havoc with a film crew on the Amazon River. Eventually they blow it up and go on about their business, after several of them are killed.  Of course, there is a sequel where more of them hunt down another group of people and the tale goes on.

Those of us who have had bouts with the MS hug kind of know how those people who came across those snakes feel.  The MS hug will take your breath and make you wonder if you will be squeezed to death.  It is scary and painful.

There are tiny muscles between each rib, called intercostal muscles which basically hold the ribs together, but also give the ribcage some flexibility; it's when these muscles go into spasm that we get the MS hug, a friendly description of an extremely uncomfortable and painful condition.  People have described it as crushing, burning, a tight rubber band, a boa constrictor, and excruciating. 

There are several treatments doctors prescribe for this condition.  Diazepan, Ibuprofen, analgesic cream, Lorazepam and heating pads or a hot water bottle are the most common treatments.  Many doctors do not recognize this as a symptom of MS and do not offer any type of treatment.

As anyone who goes through the ups and downs of MS can tell you, there are more symptoms by far than any one web site, medical journal or doctor can wrap their heads around.  Not all MSers have the same symptoms and not all have “textbook” symptoms.  The biggest thing that most of us would like to have besides a cure is more understanding from our doctors.  These pains and feelings we have are real and whether it is normal or unheard of, they pose a problem to us in our everyday lives and need to be addressed.

Until that happens, we will try to do the best we can to live as good a life as possible………..and stay away from the Amazon!!!

A New Line Of Defense

Many people work in defense for a living. 

A prosecutor will set out his/her case, call their witnesses and present their evidence to try to convict the defendant. The defense attorney will object, present his/her own witnesses and try to discredit the prosecutor’s witnesses in defense of their client.

In football, the quarterback will throw the ball downfield to his receiver and hopes he will make a touchdown.  The offense will try to protect the quarterback from getting hit and open up an area so the receiver can have a clear field to run without getting tackled.  The defensive players will try to tackle the quarterback before he can throw the ball.  If they don’t, they will try to get to the receiver and defend their side of the field against him running and making a touchdown.

According to the web, the Department of Defense is the U.S. federal department charged with coordinating and supervising all agencies and functions of the government relating directly to national security and the United States armed forces.  To stay out of trouble, I will not comment on that! J

In a perfect case, when we have an infection, cold or some such illness, our bodies turn on this invasion and fight it.  With MS, this does not happen.  Our bodies turn on the parts of our system that fights disease and makes us that much more vulnerable to problems.  Our defense mechanism kicks out of gear.  With many of us, this onset of problems often leads to a bout with depression.  It is rather frightening to realize that your body is not helping but hurting our chance of fighting a disease.

There is real excitement concerning new cancer treatments.  According to the City of Hope website, immunotherapy uses the body’s own immune system to attack cancer tissue from within.  Using pioneering technology, they have been able to isolate immune cells from a patient’s blood sample and then engineer those cells to express an artificial receptor that will seek out and attack cancer cells.  Unlike chemotherapy, there are no harsh chemicals invading the body and no radiation to kill normally healthy cells in the process.

It would be wonderful if something like this could be developed for MS treatments.  As it is, most of the drugs used have serious side effects and often do nothing to halt the progress of the disease.

Maybe we need a new defensive coach to train our teams and get them back on track?!

Abracadabra

I think everyone has seen a magic act at some time in their life.  There used to be several variety shows on television when I was young and each one had a magic act on them every week.  Some magician was always sawing some lady in half or making her float in the air.  It was fun to watch.

No matter who the magician happened to be, he always said “abracadabra” when he was getting ready to perform his magic.  It was a standard catch word for all magicians.  I have not seen a magic act in a long time and don’t know if it is still used as much or not.

The word abracadabra is believed to have originated from the Aramaic language.  The original words were ibra, which means “I have created” and k’dibra which means “through my speech”.  The word abracadabra therefore means “created as I say”.  Wouldn’t it be nice if doctors could “abracadabra” some cures for a few problems?!

Most of us, I hope, believe that only God has the power to perform miracles.  He has given the knowledge of some things to man to try and better man’s circumstances.

Unfortunately, man has become more interested in bettering his own personal circumstances rather than the betterment of mankind.  Many doctors have become wealthy from the disabilities of their patients.

I have no problem with personal wealth.  If one has honestly worked hard and made a good living, I feel they are entitled to it.  It is the person who takes advantage of other’s misfortunes to obtain wealth that is upsetting to me.

Talking to many on our MS sites has reaffirmed some of the thoughts that I have been thinking.  Many of us have been shuffled from doctor to doctor, test to test, medicine to medicine, without any regard to improving our situation.  Many of us still do not have a regular treatment plan or firm diagnosis from all that testing.   The only thing we can count on is that at each visit, we will be asked to try the same test again or a different medication.  It gets really frustrating.

On a more positive note, some have found wonderful doctors who take the time to listen to them and try their best to find medications to ease their pain and slow the progress of their disease.  These doctors may not always understand what their patient is trying to tell them, but they always listen and try to understand as best they can.  It is these doctors who have made giant steps in finding ways to treat MS.  They have also recognized that textbook symptoms often do not include a large portion of what real patients are going through.

So, even if we can’t have an abracadabra cure to our problems, we can listen to each other, share with each other and rejoice in each other’s accomplishments.  This, in itself, is magic!

I Think I Can, I Think I Can….

Have you ever read the story, or seen the movie of “The Little Engine That Could”?  In the story, there is a long train that needs to be pulled over a mountain.  Several large engines are asked to do this but all refuse.  A small engine is asked to pull the train and he agrees to try.  The small engine pulls the train over the mountain while repeating “I Think I Can, I Think I Can”.

Many of us with chronic diseases have this thought running through our minds a lot – “I think I can, I wish I could”!  There are so many things we want to do, knowing that it will be a challenge to us.  What seems like “small potatoes” to most people are giant hurdles to cross for us.

A large portion of us with MS face the battle of fatigue every day.  Not being tired – being exhausted.  This feeling usually goes from the time we wake up until the time we go to bed.  It makes us more prone to falling and dropping things.  When your legs feel like a thousand pounds each, they hang and make you fall.  When your arms and hands feel heavy, you often drop things.  It is an uphill battle every moment of every day.

Most of us have problems trying to think.  I know that sounds minor to some people, but it is frustrating and makes every day life hard to deal with.  Things that are repetitive, such as doing things at work, get short-circuited and just “aren’t there” anymore.  Things that should be a part of one’s normal routine have to be thought out.  Making a list of every aspect of life becomes the only way to keep up with trying to get through the day.

When I worked as a paralegal, I spent a large part of the day typing.  I had to compose legal proceedings, briefs, orders and such.  Not only could I not get my thoughts together to do this anymore, my fingers often go in the complete opposite direction that I am trying to get them to go.  My typing often ends up in a long forgotten language! 

I read about people with MS who have friends and family that do MS walks and runs with them.  It makes me really jealous!  It has been quite a few years since I was able to run.  I am barely able to walk outside on my own.  I hold onto something (usually my husbandJ) and would never make it on a long walk because of the fatigue issue.  I would love to be able to do paralegal work again.  It was very interesting and rewarding.  As I have already said, my brain nor my fingers would allow that to happen.

All the above seems so negative, but I don’t mean it to be.  Most of us with MS problems have come to grips with the things we can no longer do.  Thankfully, that leaves a whole lot of things that we can still do.  Only people with limited imaginations are the ones in bad shape. The rest of us find new things to do get interested in.  The old “I think I can” mentality kicks in and life is still good!! J

Superhero In The Box?

I love the Cheerios commercial where the little boy and his Daddy are shopping in the grocery store.  The Daddy get a box of Cheerios off the shelf and the little boy asks him questions about things in the box.  He names off several things like toys, stickers and such that might be in there.  He finally asks if there is a superhero in the box and the Daddy says, “kinda”.  I think it is a sweet, cute commercial.

It is a shame a superhero can’t be found in most boxes of medicine.  I am sure there are days when we could all use one.  Most of the things we take for colds, flu and such are just that – things.  If we kept our money and waited a certain amount of time, the cold or flu would run its course and be over with just as fast without the “thing” we bought to help it.

I know that stomach medicine and cold remedies often ease the symptoms we are having.  But they don’t cure the problem.  Sometimes the problems we are having are brought on by things we do.

If you have a sensitive stomach and you insist on eating pizza, you will have a stomach ache.  You can ease the pain with OTC medication, but it will not cure the stomach problem, or the thing causing the problem.

If you are around people with colds, you will more than likely get one.  You can ease the symptoms of the cold with OTC medication, but if you get around those people again, you will probably catch another cold.

These things do not take a rocket scientist to figure out!

The sad part of this is that a lot of us have problems that OTC medication and no amount of trying to avoid certain foods or sick people can help or cure.  Not just people with MS, but a great number of people have things that they could not have avoided having and see no cure in sight.  Although many of us are avoided by the general public out of ignorance, we are not contagious and present no problem to the public.

We would all like to be able to find that superhero in a box.  Although that is very unlikely, we do find a lot of “heroes” in our everyday lives.  Our support groups, whether family, friends, or strangers, are all the superheroes we could ask for!!!!

The Monster Within

My Daddy always loved horror movies.  I like them too, but prefer mysteries.  It is fascinating to me to follow the crime, clues and get to the conclusion of the story.  I would love to have the brains to figure out some of the things that these detectives and law enforcement people have to on a daily basis.

Illness is like that.  Every day we have different problems and many of them often fit into several different categories. 

Headaches are pretty common with MS.  They are also common with colds, the flu, infections, etc.  To put them into one category is being naïve.  Some headaches will take you to your knees while others are just annoying.

Pain could fit into a multitude of categories.  Some pain is severe while other pain can be eased with aspirin or other OTC drugs.  Some pain lasts days, weeks, months, or years, while other pain lasts only a few hours.

Vertigo can come from many different causes.  Inner ear infections, nerve tissue damage, diabetes, head trauma and migraines can cause this.  Some causes of vertigo are treatable and last only a short time.  Other causes many last a lifetime.

Each symptom/clue of any illness or diseases can lead to a diagnosis.  Sometimes, though, an illness may share so many symptoms with other diseases that it is hard to diagnose. MS is one of those diseases.

MS can have a few symptoms or a multitude of symptoms.  The symptoms may all come at once, or vary from week to week.  Most of us with MS fluctuate from symptom to symptom and wake up in the morning wondering what the day will bring.  More often than not, it is not a lessening, but a worsening barrage of pains and difficulties.

As with any “monster”, having the tools and knowledge can help fight it, but may not destroy or keep it under control.  Medical science has developed several treatments for MS, but they often do little more than slow the development of the disease.  There is no cure for MS.  All we can hope for is an easing of some of the problems we face each day and the support and help of our friends and family.

I really don’t believe in those “bump in the night” type of monsters.  But, just in case I am wrong, I will keep my stake sharpened, crucifix over my bed and necklace of garlic handy!

Bombs Away!

According to the Mayo Clinic, the cause of multiple sclerosis is unknown. It's believed to be an autoimmune disease, in which the body's immune system attacks its own tissues. In multiple sclerosis, this process destroys myelin — the fatty substance that coats and protects nerve fibers in the brain and spinal cord.

Myelin can be compared to the insulation on electrical wires. When myelin is damaged, the messages that travel along that nerve may be slowed or blocked.

Doctors and researchers don't understand why multiple sclerosis develops in some people and not others. A combination of factors, ranging from genetics to childhood infections, may play a role. Women are about twice as likely as men are to develop multiple sclerosis. You're very slightly more likely to develop multiple sclerosis if you have thyroid disease, type 1 diabetes or inflammatory bowel disease.

Having said all that, it seems to me that a generalization of MS is that your body attacks itself.  The “wires” that carry our nerve fibers get frayed and short-circuit or disconnect, thus some of the charges that need to be going to the brain don’t make it.  Kind of like a traffic jam on the interstate.

To me, there should be a way to declare war on this process!  When an electrical wire gets frayed, electrical tape is wrapped around the damaged part and the connection is repaired.  Sometimes, the damage is so extensive that another wire is needed and the old one is discarded.

If the medical profession has figured out a way to transplant hearts and lungs, replace tissue and blood vessels, repair teeth and parts of the eye, and many more delicate procedures, why can’t they repair damaged nerve conductors?  This, to me, would seem like a simple procedure compared to brain surgery and heart transplants.  Maybe it is just me, but wrapping a nerve conductor has got to be easier than brain surgery!

I think we should declare war!  If we can’t beat this disease, at least we can join together and give it a good fight!

Just An Old Wives Tale?

I was reading some stuff on the internet the other day and came across some old wives tales.  One that really interested me was: “You shouldn’t jog.  It jumbles up your insides.”  Ah ha!  Finally one that makes sense!

Problems with walking are among the most common mobility limitations in MS.  Walking problems are related to several causes.  Muscle weakness can cause problems such as toe drag, foot drop, “vaulting” (a compensatory technique that involves raising the heel on the stronger leg to make it easier to swing the weaker leg through), compensatory hip hike, trunk lean, or swinging the leg out to the side. Muscle tightness or spasticity can also interfere with walking.  Balance problems often cause patients to sway and have a “drunken” type of walk known as ataxia. Some people with MS have such severe numbness in their feet that they cannot feel the floor or know where their feet are. This is referred to as a sensory ataxia. Many people will experience increased walking problems when fatigue increases.

According to the MS site, most walking problems can be helped to some extent by physical therapy (including exercises and gait training), the use of appropriate assistive devices and, in some cases, medications.  I don’t necessarily agree with that statement.  I have had physical therapy, have a walker and a cane and take medication.  Sometimes I still have a problem walking and still fall more than I want to. 

My physical therapy made me aware of turning correctly, going up and down stairs and such.  It did not keep me from falling.  The cane and walker help when I am grossly off-balance, but I still “fall over them” sometimes.  The medications I take usually cause me to want to sit in the chair and watch TV or read.  This actually DOES keep me from falling, but only because I am not walking! 

The best answer to falling is to always be careful and take it slow and easy.  That probably seems like a stupid statement to some people.  For those of us still trying to “be normal”, it might cause us to think before we do something we know we shouldn’t. 

Actually, most of us MSers know we should not jog.  It may not jumble up our insides, but it is a pretty sure bet it will jumble up our face when we hit the floor!

Sleepy, Dopey, Grumpy, etc

MS makes me very moody.  When I am hurting more than usual, I find that I am grumpy.  When I have to take more medicine than usual, I am dopey.  When I have my usual sleepless nights, I am sleepy.  When I have a fairly good day, I am happy.  I think that the 7 dwarfs would welcome me into their family because I can relate to just about all of them!

All of us, whether MSers or not, have moody days.  The trick is to balance our moods so as not to interfere with the moods of others.  What does that mean?  If someone is happy, don’t growl and be a “party pooper” just because you don’t feel well.  I have been around a lot of people, at work and otherwise, that just can’t stand for someone to feel good if they don’t.

The same is true for other moods.  If you are having a good day and are happy, don’t dismiss the problems someone else may be having.  I have also seen people disregarded when they were having problems and others were having a good day.  I have known some of them to try and harm themselves because no one took the time to try and help them.  We all know that the suicide rate is really high, a lot of the cause being that no one took the time to care.

So many of us live in our own little worlds when we have a chronic illness.  It is easy to get lost in our own routine of trying to get around, take our meds and do the normal things that others take for granted.  I know that I have been guilty of this and am trying hard to correct this fault.  (1 down - a gazillion to go!)

I hope we can all stop and try to recognize what others around us are feeling and going through and be the shoulder or smile that they need.  I know I could use one of each many days…….and hope to be able to provide these on other days.

Today’s blog was brought to you by:

Sneezy; Sleepy; Dopey; Doc; Happy; Bashful; Grumpy

Earthquake Zone

Several months ago I was sitting at the computer, minding my own business, and the world shook.

It took me a few minutes to realize what was happening since most of the time I am shaking anyway.  I got the picture when my dog’s eyes got really big and she howled.

Howling from your dog may not seem like much to most of you, but Buffy NEVER howls.  She has a high-pitched, Pomeranian bark, which she uses every chance she gets.  Otherwise, except for snoring, she doesn’t make noise.  Howling was quite out of the ordinary.

Like most MSers, my hands often shake, legs wiggle and jump, back and arms buzz, etc.  I have had times when I was afraid to pick up a glass or try to feed myself for fear of spilling it all over the place.  Although this is not an everyday occurrence, it happens often enough to be considered a normal part of MS.  When the earthquake happened, it was really strange because I could hardly feel the “extra” shaking that wasn’t coming from something I was doing on my own.

I am on several website with other MSers.  It makes me really sad to read that some have quit going out and socializing with their friends.   Many of them do not want to embarrass the people they are with by going out to eat and dropping things.  Many don’t go to the movies anymore, shopping, or anything in the public. 

I know how they feel.  I have gone out to eat with my husband and he had to end up feeding me.  Although it was a totally sweet thing for him to do, it made me feel so bad.  I felt embarrassed, helpless and just wanted to cry.  He just ignored everyone around us and kept talking and eating.  He is so special!

I have been putting my thinking cap on and trying to come up with things that we can do during our shaky times that otherwise might be hard.  I have the following so far, and will think about more:

Shaking spray paint

Shaking orange juice

Shaking salad dressing

Shaking whipped cream

Anyone have more suggestions???!!!

Power Grid

According to the PBS website: “On September 15, 1878, a group of New York reporters traveled to Thomas Edison's laboratory in Menlo Park, New Jersey, to hear his most startling announcement to date. In just six weeks, he told them, illumination by gaslight would be obsolete. He would create a vast, new industry to provide electric power that would light up America -- and revolutionize the world. "When I am through, only the rich will be able to afford candles," he said.

Most of us with MS are plagued with buzzing.  For those of you who don’t know what this is, it is tingling, pins and needles, shocking feelings.  They can be in your legs, arms, hands, feet, face, or anyplace else it decides to set up shop.  It is a very unpleasant feeling that can last hours, days, months, or years.  It is often so strong that it is amazing to the person it is happening to that sparks are not shooting out of that part of their body.  A person’s touch, clothing and even the bed linens can cause a shocking sensation.

Most physicians state that MS-related numbness and tingling (buzzing) are “only an annoyance” or “no cause for worry”.  Obviously, they have never had this!  To most of us that go through this symptom, it is torture, both physically and mentally.  90% of people with MS report tingling or numbness as a symptom. 

I think the medical profession is overlooking a way to make a vast amount of money………not that they don’t already!  All those of us  would have to do is stand side by side, touch fingers every now and then, and the world would be lit up!

Remember the song “We Are The World”?  I have some new lyrics:

We have the Light; We have the Power.  Together we can stand and light the world in just one hour!

Think it’ll catch on?? J

It’s Like A Bad Storm

We have been glued to the weather channel lately.  So many in my family were in the paths of the tornadoes and severe thunderstorms that have been plaguing the country this past week.  It is hard to watch as storms get close to those you love and you have no way of contacting them because of power outages and such.  It is such a relief when they let you know they are fine.

Unfortunately, last spring one in my family lost their home and almost their lives to a tornado.  It was one of the most frightening and sad things I have been through lately.  Although thankful to be alive, the ordeal they went through will be with them the rest of their lives.

MS is kind of like a severe storm warning – you know it is there, you just don’t know where it will strike.  Most of us have a multitude of symptoms.  Some of them are with us all the time while others come and go.  You know they can strike at any moment, just not when or where.

I remember when I was young and the adults would talk about arthritis pain coming and going.  Some of them even made light of the fact that it must not really be that bad or it would hurt all the time.  If you have arthritis, you know this is not true.

The same goes for MS.  As all of us who struggle with it on a daily basis have said many times, it is a monster.  It takes over your life and refuses to let go.  It may ease the stranglehold it has on you at times, but it never leaves you totally alone.  The thing MS patients hate to hear more than anything else is: “But you look so good”. 

There is no “weather central” for MS patients to know when things are going to get worse.  That may be a good thing.  If we knew how bad we were going to be tomorrow, we might just stay in bed!  There is no test to tell how bad any one particular person will be in years to come nor any way to tell how you will feel tomorrow.  We all just have to hope and pray that each day we will have the strength and will-power to deal with whatever the day brings.

I guess if medical science ever gets to the point they can predict MS on a daily basis, there will be an MS weather channel and all of us in the family will tune in.  I would love to be one of their weather girls…………..but only if the outlook is for pain free, happy days!! J