Tuesday, April 19, 2011

Let's Call A Truce!

I think Muggles may be getting a raw deal.  Those of us who fight the Dragon each day often put them down in a rather harsh way.  We complain that they don’t understand what we go through and do not try to get the facts before judging us.  For the most part, that is true.
But it is also true in many other circumstances.  When my husband talks about his grandfather, he describes him as grouchy and bitter.  His grandfather had crippling arthritis.  His hands were so twisted that he could not feed himself.  As this was many years ago, there was little that the doctors offered to help with the pain.  I am sure that he was constantly in horrible pain, not to mention the disabilities he suffered.  Most people only thought of him as being grouchy, not thinking about what he went through each day from waking until sleep.
I remember a boy I went to school with who had a brace on his leg.  He was kidded unmercifully by some of the other kids.  He had had polio when he was younger and would be crippled the rest of his life.  No one seemed to think about what he suffered each day trying to walk and put up with the stares and taunting of others.  Most only saw that he was different and wanted to make sure he was aware of it in a cruel way.
Those of us who struggle with the different aspects of the Dragon each day often are as critical of the Muggles who don’t know anything about MS as they are of us.  Although they really don’t understand our struggles, does it really give us the right to be as cruel to them as they are to us?
I think maybe we need to back up and think over our reactions to them.  If we are honest with ourselves, were we not Muggles just months or years earlier who didn’t have a clue about MS and its effects on people’s lives?  Maybe the Dragon people and Muggles need to call a truce and learn to live with each other and love their differences instead of making a war out of them.

Monday, April 18, 2011

You Know You Have MS When…………………

These are from a variety of people who posted an answer to the above question:
. . . . .you always feel like your pantyhose are on sideways
. . . . .you’re late for your flight and realize you’re at the wrong airport
. . . . .you still can’t figure out why the cell phone won’t turn on the TV
. . . . .you can’t remember what the vacuum is called so describe it as an indoor lawnmower for the carpet
. . . . .you call to report your car stolen only to find it parked on the other side of the parking lot
. . . . .you start out to the bank you have gone to for years and drive up and down the road because you can’t remember where it is
. . . . .you sit at a stop sign waiting for it to turn green
. . . . .you have a problem with walls jumping out at you
. . . . .you start to speak to the person you have worked with for years and have no clue what their name is
. . . . .you have a signed note from a judge that says you are not drunk in case you get stopped by a cop for walking in a zig-zag fashion
. . . . .you run out of creative ways to put your clothes on
. . . . .you trip over a string on the floor
. . . . .you fall “up” the stairs
. . . . .you go someplace and realize you have forgotten to put your shoes on because your feet are numb and you can’t feel the floor
Hope you enjoyed these………it is always better to laugh than cry!!!!!!

Friday, April 15, 2011

Can’t You Smell That Smell????

I didn’t say anything about smells, because it seemed too unreal to be a part of MS.  But after reading some of the people on MS Facebook, I am ready to believe it is.
It is a funny thing.  I can be doing something, little to nothing, and a weird, wood burning smell surrounds me.  At first I would look around to see if something was burning.  After it happened a few times I realized it was just me and not to panic thinking something was on fire. 
It is not an unpleasant smell, just a smell like someone burning a fire in the fireplace or woodstove.  There are much worse smells to smell.
The problem with it is that once the smell starts, it usually means that I will have a lightning bolt, face pain, legs weak or something else flair up.  I guess it is a “heads up” signal that my body is getting ready to revolt.  Most of the people who have mentioned this also notice this.  From talking to their doctors, it is not on the MS symptom list and not considered as part of MS by their doctors.  Fortunately, there are enough of “us” that have the same things happening that we can make our own conclusions.
The mind is a funny thing.  MS makes it short circuit, overload or act funny in all kinds of ways.  Maybe there is an overload, like with an electrical circuit, and it causes a “fire”.  Makes sense to me!

Thursday, April 14, 2011

Altered Dreams

Most of us have a lot of dreams when we are young.  We dream about finding a mate, having a family, getting the perfect job, finding the perfect home and other such normal things.  We also dream about retirement and all the traveling we will do and having the time to do all the things we could not do while in the workforce.  Usually, these things only come partly true.
Most of us worked at a job that was only fulfilling in that it paid the bills; our family was not perfect; we could not afford “the perfect” home; illness plagued us off and on.  When we started getting older, all the things in our dreams had to be downsized to fit how life actually was.
I am fortunate in having a wonderful husband, nice house, good kids and enough savings to live without fear of having things taken from me.  The only real problem I have is the MS working against my body.
I didn’t expect to be jumping around and feeling like I did at twenty, but I did expect to be able to go on trips and do crafts and play with my grandchildren.  I am quite limited in these endeavors.  It makes me sad to think I might get to the point where I am wheelchair bound and unable to do most of the things of my dreams.
I have, however, decided that dreams can be changed at the last minute and made into reality.  As long as I have any part of my brain, and able to maneuver along in any fashion, I will enjoy my life and have fun!

Wednesday, April 13, 2011

Run That By Me Again, Please!

I have a hard time explaining things to people.  The words do not come with the images that are in my brain.  It is a really goofy feeling.
Names of people that I have known all my life seem like rocket science.  I am no longer even attempting to do anything financial.  It would be a total disaster I am sure.
To combat this, most MS doctors suggest cognitive therapy.  This therapy consists of taking walks and naming the things one sees out loud, horseback riding, telling stories, playing Mahjong, working crossword puzzles, and avoiding anything that has to do with financial affairs. They also suggest that the problems seem to improve with rest and reducing confusion to a minimum.
I don’t know about you, but life is full of confusion and usually lacking in rest.  There is always something to do and some problem that needs to be resolved.  Most doctors have not experienced first-hand any of the problems involved with MS (or most other problems that they dispense medical advice for!). Their answers for solving these problems have no place in reality;  maybe in a perfect world, but not in this one.
I guess we just have to make our minds up to take what help they can give us, talk with people who are going through what we are, and sort out for ourselves what is best for our own situation.  Yes, just call me Dr. Toney!

Tuesday, April 12, 2011


I really envy people who go to bed and sleep.  It seems like a foreign concept to me the past few years.  Not only do I not sleep at night, I can only rarely sleep in the daytime either.
Most nights I toss and turn most of the night.  I get hot, not like a hot flash, but inside the body hot.  It feels like I am suffocating from inside and can’ cool off.
Sometimes the leg pain is bad.  No matter where I put my legs, they are pulsating and uncomfortable.  I was told years ago that I had Restless Legs, but it is also a part of the MS cycle.  There is no amount of pain medication that can stop it, short of just taking enough to knock yourself out.  I am NOT into that!
There is also the back of the neck, down the spine pain that always wants to start around one or two AM.  The pillows won’t adjust under my neck right and no matter which way I turn, it still hurts.  The MS doctors say it is the nerve sensors trying to make their rounds in the body and the body is resisting them.  Whatever, I just wish they would go where they need to be and quit hurting!
OK, tired of my whining yet?  I am!  Just need to vent a little now and then……………
All in all, life is pretty good.  I am still walking and still able to write this in what I hope is proper words.  Those, in themselves, are cause for rejoicing!  Many are not this fortunate and have no prospects of ever having these functions back.
Each day brings new challenges to all of us.  We should always be thankful for the faculties we still have and can use.  They are not promised to us tomorrow, so use them and enjoy them today.
Me, I think I will walk all I can today and try to catch up on some of my correspondence and other writing projects.  I am very thankful for all I have and hope that my brain will find time to come back and visit me some!

Monday, April 11, 2011

That’s A $250.00 Fine!

I used to work for an attorney who was the Tuesday night traffic court judge.  It was interesting to work those nights and see all the people who came in.  Most gave the most ridiculous excuses for why they had been speeding, driving drunk, etc.  The judge was an easy going type guy, but rarely took any slack from them.  Often, he had to put his hand over his face to keep from cracking up.  It was a very enjoyable part of my job.
I remember some of the excuses people would give for parking in a Handicap Parking space:  they were running late for work and just needed to run into the grocery store for a minute and it was the closest spot; they had twisted their ankle and thought it would qualify for a handicap; they didn’t notice the sign, and a hundred other excuses.  None of them held up and they were always fined.
When I was at the doctor’s Thursday, he said that if I would get a form from the DMV, he would fill it out to get me a Handicap Parking Permit.  It was a nice gesture, but one that I have thought a lot about since then.
I guess we all would like to think we will be fit and healthy until our last breath, knowing that it probably is not true.  I guess I wanted to think that I was not as bad off as I sometimes am. 
A Handicap Sticker puts me in “that” group.  You know the ones – they hold the checkout line up with their motorized carts, walkers or just slow stride; they get irritated when people bump past them; they always seem to be in a bad mood; they seem to expect people to give them room and treat them better than others. 
I refuse to comply.  I will use my sticker because most days I cannot walk a long distance.  The further I walk, the number my leg gets and more likely I am to fall.  But I WILL NOT be one of those crabby people most associate with Handicap Stickers!
I plan on starting a new group………..the Happy-To-Be-Alive-And-Able-To-Get-Around Handicap Sticker Group…………anyone want to join?????!!!!!!!!!!!! J

Friday, April 8, 2011

Sigh of Relief

I went to the doctor yesterday.  I think I have mentioned that he is a football player sized guy, with a soft voice.  He is very unusual for a doctor, at least in my opinion, because he is never rushed and takes time to listen to what you have to say.  In most of my dealings with doctors, this has not been the case.
We discussed the different symptoms that I have been having recently and he asked if I had made a decision on treatment.  I hesitated.  He told me that it was important to start some type of treatment to try and slow the progress of the disease.  Otherwise, it could run rampant and I would be in big trouble.
I asked him which treatment he would chose if it was up to him.  He smiled and said that he was a wimp when it came to shots and would choose the pill.  Needless to say, I was elated with that statement! 
Gilenya is the only oral treatment for MS.  If you look it up on the internet, you can see how much it costs.  Not that it is any higher in cost than the other treatments because they are all outrageous cost wise.  My doctor agreed that it should be a sin to charge such fees for something that is so important in people’s lives.
His office will send off the paperwork and we will wait to see if we are approved for this treatment.  It is up to the insurance company to see if they will cover it, and, if not, I will have to make another choice.  As I said, the only other choices involve shots.  I am really praying this will be approved.
One of the worst things with having MS is that any amount of stress can trigger another symptom.  I was really stressed about going to the doctor yesterday and had been experiencing a variety of different symptoms, from burning down my spine to being almost unable to move my neck.  I am hoping that this will ease now that there is a chance of getting out of taking shots each day.
Now if I could only get out of some of my other causes of stress…..but that is asking for a miracle………. J

Thursday, April 7, 2011

Doctor, Doctor, Gimme The News……………

I go back to the doctor today.  I am supposed to tell him which treatment option I have chosen to go with.  I am not sure what to tell him.  I don’t like any of them.
Most of the people I “talk” with on the MS network are taking a variety of treatments.  Most of them have adverse reactions to the treatments and have a lot of problems related to the treatments.  Many of them are considering stopping the treatments and trying to just make it on their own.  Many have been looking into alternate treatments and “un-medical” means of treatment.
There are many forms that these alternate treatments take.  Many resort to marijuana, acupuncture, hypnosis, and other means to try and get relief that normal means of treatment do not seem to be helping with.  I do not want to go that route, but don’t know if I am ready for the side effects that routine treatments seem to cause.
If you read the little readout that comes with most medicine, it will scare you away from taking it.  Most of us just ignore it and go ahead and take what we are prescribed.  That is not always the smart thing to do.
There are tons of attorneys who are making a living solely on cases where prescribed medication has caused terrible consequences to patients, and sometimes even death.  Since the decision I make will be a long term one, I don’t want to rush into it.  I am hoping my doctor will understand this and not rush me.
Whichever treatment I end up choosing will not cure my disease so I don’t think I will need to be in any kind of a big rush to get started on it.  At best, it will try to hold the progress of the disease a little and let me have a longer life with as few symptoms as possible.  Since I already have symptoms that show progression to a certain level, I am not sure that jumping into treatment will actually do me much good.
I like my doctor and hope that he understands my hesitation to want to be a pin cushion……….. did I mention I HATE SHOTS!!!!!!

Wednesday, April 6, 2011

Tit For Tat

I feel pretty good today.  Yesterday, I had a serious case of brain drain.  Today, my brain is a little bit clearer, but my legs don’t want to work. 
I am wondering if each little area that is affected by MS gets together while I sleep and discusses who will work and not work that day.  According to what my MS family says on the network, it seems to be that way with them also.
I was also wondering that if I could chose which part of me works and doesn’t, what would I chose.  I have watched my aunt go blind over the past few years.  She was always an outdoor person who laughed and enjoyed life to the fullest.  Now, she is confined to a room at an elderly care facility.  She still has a bright outlook on life, but is quickly going downhill in her health and mental capabilities. 
I think I would hate to lose my vision most of all.  If one can’t walk or think, at least they can enjoy seeing and experiencing the beauty of things.  There are many days I can’t walk much and although they are trying on one’s nerves, at least there are things that can be done where you are.  If you can’t see, you are pretty much shut up in your own world. 
On days I can’t think clearly, my husband takes care of the business end of things.  Even when my thinking is limited, I can still cook, wash clothes, and dabble on the computer. 
When I am exhausted, I can lie down and rest, or do simple things that don’t take much energy.  When I can’t swallow well, I eat soup or drink milkshakes and such.
I think, if we have to, we can adjust to whatever life has to offer us.  We just have to put ourselves in the mind frame that there are so many that have it much worse than we do.  I like that attitude and will try my best to keep it!

Tuesday, April 5, 2011

And Your Name is …......…….??

I have cognitive issues.  Cognition refers to a whole range of different intellectual processes our brains undertake to perform tasks and keep us functional. An easy way to understand cognition is to think of it in terms of memory and thinking.
Cognitive Dysfunction is one of the more scary symptoms of Multiple Sclerosis. It used to be thought that cognitive dysfunction was a relatively rare symptom of the disease but it is now understood to be quite a common feature.  There is no single description which fully encompasses the term, 'cognitive dysfunction'. It really applies to a whole range of problems and issues associated with, and related to, intellectual functioning.
Memory Dysfunction is the most commonly reported cognitive dysfunction in MS and occurs in 20 to 44% of people with MS. The type of memory problem most often reported is in recalling  recently learned material. Free recall is the ability to get to a memory instantly - MS rarely seems to affect a person's ability to get items into the memory banks - just our ability to get it out "right now". What also does not appear to be compromised very often is a person's ability to understand and learn new concepts nor the speed at which they do so.
Verbal fluency is affected in some people with MS whereas verbal comprehension appears undamaged. Verbal fluency deficits usually take the form of slowed free recall of words that describe concepts and less often words that name objects.
Cognitive Fatigue. On average, people with MS tire more quickly during psychological tests and often start off matching control subjects but their performance trails off as the test progresses.
Impaired Planning Skills. One study reported that 40% of people with MS are less able to plan things than healthy people.
So, if your MS friend looks at you one day with a blank stare like they don’t know you, they may not…….or at least not your name!

Monday, April 4, 2011

Play It Again and Again and Again Sam…….........…….

Let’s see, there is the one millionth showing of an Andy Griffith Show, a movie that looks like it was probably x-rated at the theatre, 24-hour weather, and a guy saying he can help you teach your bird to do the Moonwalk. 
It is a little after 2 AM.  Once again, sleep is nowhere to be found. I never appreciated how awful insomnia was until I had it.  Much like many things people have, we can say “I’m sorry”, but have no clue what they are going through. 
Many in my MS family talk about sleepless nights.  It is a common thing with us.  Many even take prescription sleep aids but say they fall asleep, but still only manage to sleep a couple of hours at a time.  I usually manage four or five hours a night.  Unfortunately, it comes in one hour increments and does not leave me rested.  I do not want to get a sleep aid because it does not seem to help that much.  Besides, I feel like I’m taking enough medicine as it is!
Since fatigue is one of the worst symptoms of MS, the sleeplessness does not help.  Even though most of us try to rest several times a day, sleep does not come. 
I know I have talked about this several times, but it is important to know.  If you know someone who has MS and they are sluggish and tired a lot, please be patient with them.  I can guarantee you that it is not the way we choose to be.  It is very discouraging to get up each day and feel like you haven’t been to bed yet.
So, I think I’ll flip through a few more channels and see what is on.  I am sure that Hadji (our Indian Ringneck parakeet) would not be interested in doing the Moonwalk, so I will search further.  Hey, Casablanca is on………..I love that movie……….I think I’ll watch it for the umpteenth time………..Bogie is always worth another look..……… J

Friday, April 1, 2011

Put On Your Girdle!

All of us would like to think we can manage on our own if we had to.  We all have a stubborn, independent streak in us and hate to think we are dependent on anyone.  Hopefully as we age we give in a little and don’t try to fight the help that others give us.
I think that is one of the worst aspects of having MS – losing my independence – not being able to take care of myself.  I’m not saying I can’t do anything for myself, just that many of the things I do I now need help with.  Take walking, for instance.  I never thought anything about going up and down the steps, or just walking across the floor.  Now I make sure I am balanced before I start walking and NEVER go up or down steps without my husband holding onto me.  It is very frustrating.
I do have my husband for support.  Many people I hear from and talk with have no one except their “MS family” to support them.  Their friends and family do not understand what they are going through and give them no help or encouragement.  Most of those people are very depressed and on a lot of medication to keep their heads above water.  That is so sad.  I would hate to think that the only support I have is out of a medicine bottle.
The reason that AA and other support programs work is because they involve people who have been in the same situation.  I could not effectively counsel someone with an alcohol or other drug problem because I have never had that problem.  The same is true with people who try to “whitewash” MS symptoms.  If you haven’t experienced it, don’t try to put it in a little box, tie a ribbon around it, and think the problem is solved.
We all need a little support sometimes………..a little encouragement…….maybe a shoulder to cry on………and a tighter girdle!

Thursday, March 31, 2011

Cold Feet and Legs, Warm….....….??

I have always had cold feet.  Even in the summertime, my feet will be ice cold.  The only time I can get them even close to warm is during a hot shower, which I can no longer endure.  This is another symptom of MS that many share.
The pins and needles are always present, but the coldness is to the bone.  My legs always feel cold.  If you touch them, they feel normal to you, but I feel like there are icicles inside them.  I wake up in the night and am burning up, but my right leg and feet are so ice cold that I feel shivers running up and down my leg.
Because MS is basically what I call a brain signal derailment disease, most of the pains and problems that it causes are hard or impossible to fix. Body temperature cannot always be perfect under the best of circumstances.  Any fluctuation in outside temperature is felt ten times more by a MS patient.  Our brains do not send the signals to the rest of our body to keep us warm or cool us off.
Many of the medications we take also play a major role in how our bodies regulate temperature change.  Often times medication stifles our body’s normal reaction to heat or cold and we end up not being able to adjust to the change. 
There are many slogans that are popular on the MS Facebook website.  Most of them are to boost and encourage those who suffer with this disease.  I think I will add a new one……….how about: Cold Feet and Legs = Warm Loving Person……….. :)

Wednesday, March 30, 2011

Can I Be Rip Van Winkle---Just For a While?

Four years ago I had another neurologist.  According to his nurse, if I would eat this, not drink that, do this or that, my symptoms would clear up and I would be fit as a fiddle.  I tried it, but guess what?  Nothing changed.
I have been taking Requip for a long time to try and help me settle down and sleep.  My husband and I did not think it helped much until we went on a trip and I forgot to take it with me.  It was a very long, sleepless, restless night for both of us.  I seriously doubt I will forget to take it anywhere I go again.
Obviously, it helps some.  I still have trouble sleeping, often lying in bed for several hours before falling asleep.  I always wake up two to three hours later and cannot go back to sleep.  I feel hot, not sweaty, but on the inside, and restless.  When I do fall back asleep it is only for a few minutes.  This goes on until morning. 
Most of the people who write on the MS site have the same problem.  There are two things that 99 percent of MS patients have: fatigue and sleep problems.  Most of them wake up, are hot, restless and have broken sleep.  Many are on medication to help them fall asleep, but are told not to take it over once or twice a week.  Unfortunately, that is the only time they get a full night’s sleep.  They often say it is hard not to abuse the medication just to get some rest.
I guess part of the fatigue with MS is lack of rest.  Most MS patients rest several times a day, but it is not a peaceful rest.  We are constantly moving and uncomfortable, so the rest does not really rejuvenate us. 
Many dream for a Rip Van Winkle period……….just sleep peacefully and let the world go by………hopefully not for as long as he did….

Tuesday, March 29, 2011

Fire On The Mountain

I always loved that song.  It has a nice easygoing sound.  It is relaxing and pleasant.
Unfortunately the song came to mind during a rather strange happening today.  I was standing at the sink (peeling shrimp!) and my back started to burn like someone had lit a match to it.  It felt like a really bad sunburn for about thirty minutes and then eased off.  I have felt this before, but not as intense.
Many people with MS have burning sensations, usually in their legs or bottom of their feet.  My legs often feel like they are badly burned, but this is the first time my back has been that bad.
According to the MS website, this type of pain is neurological in origin.  It is caused by lesions of the nervous system, peripheral or central, and it involves sensations, whether spontaneous or evoked, such as burning, itching, electric shock, and pins and needles.  Wikipedia  describes it as having  been described as feeling like acid under the skin. A patient suffering from dysesthesia can find it to be unbearable at times. Dysesthetic burning has been called "Dante-esque" pain. The terminology used to describe it is usually interchangeable with descriptions of Hell in classic literature. It is the "bluntest" pain of which the human body is capable, and is characterized by the absence of accurate discriminative information.
However one describes it, it is uncomfortable, to say the least.  I love the song, but feeling it on your body is not a pleasant thing.  Makes one want to call the fire department…………..

Monday, March 28, 2011

. . . . . . . . . A Box of Chocolates

Each morning we get up and face a new day.  We decide what we want for breakfast, what we want to wear, etc.  Sometimes the day starts off on a bad note if we have car trouble or get up late.  Most of the time, it is a normal, run-of-the-mill day.
Those of us with MS wake up each day and wonder what we will have……………. numb legs, pins and needles all over, blurry vision, head pounding, pains in our face or multiple other symptoms.  Each day either brings a new set of problems, or a continuation of the old.
Even without MS, we can be faced with waking to a cold, the flu, a bad arthritis day, or a multitude of other ills.  Every day is new and different and presents us with new challenges no matter who we are.
How we face them is what makes us unique.  Some people grumble at the least little problem.  Others face situations that most of us could not even dream of being able to handle.  Most of us fall in the “in between” category. 
I used to get frustrated when I had a really busy day at work coming up and woke up with a cold, or some other routine ailment.  I knew that it would be a really hard day trying to cope with not feeling well and needing to be extra sharp.  We’ve all been there.
I know now that I will have something each day when I wake.  Whether it is the normal fatigue and inability to balance well, to some new thing that has decided to plague me, I will have to get through the day the best way possible.  I hope I have learned, as some others have, that each day, no matter how painful or awkward, is precious and needs to be cherished.  If we are conscious and mobile, we are far above many people in this world.  For this, we should always be thankful.
I do love those boxes of chocolates, though, with the variety of choices.  Like my choices in people, I tend to go for the nuts!

Friday, March 25, 2011

You Got Your Degree Where??

I have read about some crazy “cures” for different diseases.  Some of them are really out there.  Many people have died trying them.  I used to wonder why someone would try such really stupid sounding things that seemed so dangerous.  I understand now.
I have an aunt who had cancer.  She was given only a few months to live.  She was offered a different “cure” that was illegal in the United States, but obtainable.  Since she didn’t seem to have many options, she agreed to try it.  She lived about forty more years.
I have another aunt who had cancer and was given chemotherapy and radiation treatments.  She is still living, but very thin and weak.  She has said that if it ever comes back, she will not go through that again.
 MS doctors offer their patients several treatment options.  I wrote a blog about some of them.  They are not pleasant and I still do not know which one I will end up choosing to go with.  Most are almost as painful as the disease and cause a multitude of symptoms to add to the ones the patient already has.
In talking with other MS patients, I have learned that off the wall treatments don’t seem so weird anymore.  Sometimes, the most simple of things will be the most helpful, without adding to problems one already has.  I am becoming more and more open to alternative medical practices.  There are loads of vitamins and herbs that might help. Acupuncture, physical therapy and even hypnotism have helped some with different symptoms.  I have decided to have an open mind about these things and weigh all my options before jumping into treatments.
My husband takes medication for his arthritis.  My legs have hurt so bad and been so undependable that we decided that the medicine might help me also.  I think, if only a little, they have.
My doctor is probably going to look at us and say, “and where did you get your medical degree.”  I am tempted to say, “from the School of Hard Knocks.”  After all, didn’t most of us graduate from there? J

Thursday, March 24, 2011

Going My Way?

As I was saying yesterday, we drove out in the country and enjoyed the view.  I was a passenger.  I am always a passenger now.  I don’t drive anymore.  Not that I would not if it was an emergency, but I don’t, as a rule, drive now.
When my right leg started getting numb I had to begin watching carefully how I walk.  Sometimes it walks along OK and sometimes it just sits there.  I have to sling it to get it to follow along.
I was driving one day and nearly didn’t stop when the car in front of me did.  I had to quickly put my left foot on the brake because my right leg would not let me raise it.  The decision to quit driving came shortly thereafter. It was not an easy one to make. 
When mother had her last heart surgery, her doctor recommended that she quit driving.  He told her that if she had to turn the wheel quickly, she could tear some of her internal stitching and possibly bleed to death before being rescued.  At 82 years old, it takes a long time to heal internally.  It took a while to convince her to do so, but she finally gave up her car.
I know how she feels.  I probably feel it even more than she does as I am quite a bit younger than she is.  When I was young, getting a driver’s license was the biggest thing in our lives.  It gave us independence and the feeling that we were finally getting “of age”.  Thus, giving up driving is a hard thing to do.  It robs us of part of our independence and lets us know that we have reached that age, or in my case, that condition.
I think I’ve handled it pretty well so far.  My husband does not seem to mind taking me where I need or want to go and being the family chauffeur.  I try not to think about just jumping in the car and going where I want to go without having to ask someone to take me.
If you see me thumbing on the highway, please stop and give me a ride.  My usual driver may be busy or sick and I need to get someplace………I will be a good passenger………..I promise!

Wednesday, March 23, 2011

In The Good Old Summertime

We rode out in the country yesterday to take my mother to visit with her sister.  It was a beautiful ride.  The trees are budding and the flowers blooming.  The grass is getting green and the birds are flying around trying to find a good place to build a nest.  It was beautiful.  I wish I could really appreciate it.
Although I was thrilled with the beauty of everything, my main thought was that it would soon be hot.  I don’t do hot.  It makes me weak, nauseous and have a splitting headache.
I know most people can’t wait for summer and getting outside after being stuck in all winter.  I am opposite.  Not only will I still be stuck in, but can only reminisce about all the fun I used to have in the summertime.  I loved planting and caring for a garden, fishing, lying in the sun and getting tanned, and most outdoor activities.  They are only memories now.
MS makes your body hate heat.  I love a hot shower, but feel how weak it makes me when I try to take one now.  I loved getting a tan, but know that it would not be worth the price I would pay for trying to get one.  I can help with the garden if I go out in the early morning and don’t stay long.  I can fish if I stay in the shade and don’t go on days it is over 80 degrees. 
I can do many of the things I did, but on a lesser scale and with restrictions.  I guess that is true of most of us.  Not only age, but infirmities, finances and other things in life put the brakes on many of the activities we once considered normal.  They are now luxuries.
It is still fun to watch the world begin to bloom again in the Spring and listen to the birds bring their songs to cheer the day.  I just have to do it from inside the house rather than out in the yard.  That’s OK; it is still beautiful and wonderful.

Tuesday, March 22, 2011

What Did You Say?????

Yesterday was a bad day.  You know the kind.  You can’t focus; people talk to you and you really don’t “get” what they are saying; your head feels like it is full of fog.  Concentration is out of the question.
I remember when I was young and people would say, “You know so-and-so?  He/she is a real Space Cadet!”, meaning, they seemed to walk around in a world of their own and not pay attention to what was going on around them.  I felt like one yesterday.
I don’t really think it is a total MS thing, but I have had days like that more since it started.  Some days it is all I can do to focus on what is going on around me.  My brain takes in the words, but they don’t seem to make sense.  I try to talk, but making a complete sentence seems like rocket science. 
The simple things seem so hard.  I tried to think about this blog, but words would not come in the order that they made any type of sense.  I decided to put writing off until today, hoping it would be better. 
We all have times when the world just seems to spin around us and we are watching from the sidelines.  I found myself staring off in the distance, not really looking at anything, but just blank.  I would come back to reality and have no idea how long I had been gone.
MS often leaves one lightheaded, foggy brained and at a loss for words.  It clogs the brain so much that sometimes it is hard to function or speak.  I do not like that, as you can imagine.
I would not mind being a Space Cadet if it was only for a short period of time.  With MS, the fear is that it will last the rest of your life.
I hope the ship takes off and I can wave to the crew as it takes off to outer space……….I do not want to be a passenger!

Monday, March 21, 2011

Don’t Squeeze the Charmin!

There is a symptom of MS called the MS Hug.  Up to 75% of people with MS will experience this.  It is caused by a lesion on the spinal cord and is classified as a neuropathic pain called a “paresthesia”, which is basically any abnormal sensation.  It is brought on by tiny muscles between each rib going into spasm.
It is not pleasant.  It often feels different to each person, even different on different days or times of the day.  It can be as low as the waist or as high as the chest.  It can be in one small area of the side or back, or go all the way around the torso.  It is worse when one is fatigued or stressed.
It can last seconds, minutes, hours or years.  It can be a sharp pain, dull pain, burning pain, tickle, tingling, or crushing sensation.  Some have thought they were having a heart attack or panic attack.  It has often been described as being squeezed by a boa constrictor.
When I have had it, it seems like someone is standing on your lower back and moving around to your lower abdomen.  Whether standing, sitting, or lying down, there is no relief.  Pain relievers do not seem to help.
I like to think I am handling my MS problems well and keeping my sense of humor intact.  Some days it almost seems to be impossible to do so. 
I try to read the comments from other MS patients and get their feedback on how they are doing and what treatments they use to ease some of the discomfort of the different symptoms that pop up from day to day.  There are so many different aspects to this crazy disease that it is hard to try and handle it on your own.  I am grateful for the MS “family” that is always ready and willing to help in any way possible and share what they have learned in their journey.
Until this subsides, I will wear loose clothing and keep away from the snake cage!

Saturday, March 19, 2011

Paper or Plastic?

Spring is such a beautiful time of the year.  The flowers are beginning to peek out of the ground, the trees are budding and the birds are tweeting and fluttering around.  Color is coming back into the world after being mostly grays and browns for the winter.
Unfortunately, I often look through eyes that seem wrapped in plastic wrap.  No matter how much I blink them or wash them out, the world does not get any sharper.  This blurred vision usually comes with a pounding head and eye pain.  It is not uncommon with MS.
One of the biggest complaints those of us who are patients have is that we have symptoms, but when checked out, there is nothing there.  This is typical MS.  A particular eye problem, with one of those long really medical sounding names, will not be present…….only the pain and the blurry vision that have no rhyme or reason. 
When we have doctor appointments, the first thing the doctor usually asks is what symptoms we are having.  I often feel like a hypochondriac as I rattle off a list of things that have come up between my last visit.  The doctor patiently writes it all down and I sit there wondering what he is really thinking. 
I have an aunt who is blind from macular degeneration and cataracts.  She is in a rest home, having had to leave her home and most of her belongings.  It is very sad to see her sitting there, not being able to see you.  Fortunately, she is a high-spirited woman, full of life and joy, and a pleasure to visit.  Only rarely does her situation get her down.
I hope we can all gather strength from each other, from deep within ourselves, and from our God who rules the universe.  Only then will we be able to defeat the demons who try to ruin our happiness.
Besides, it is so much more fun to J than to L!!!!

Friday, March 18, 2011

Don’t Push the Panic Button!

According to the MS Website: Life is full of stress and MS generally adds a hefty dose of disease-related stress to the mix. MS is unpredictable and just anticipating the next exacerbation can be a significant source of stress. MS can also lead to some major life changes such as loss of mobility and interference with work. Thus the person with MS faces significant challenges in coping with a potentially stressful life. Stress has also been cited as a possible precipitant of the onset of MS or a trigger for exacerbations.
What are exacerbations? A clinically significant event (meaning that it has outward signs and/or symptoms) caused by an MS lesion on your brain or spinal cord. It is either a worsening of symptoms that you already have, or the appearance of new symptoms. Relapses are also referred to as "exacerbations," "attacks" or "flares."
When I have a new attack, I tend to panic, wondering how bad it will get and how long it will last.  This, of course, causes the stress mentioned above.  It is a vicious cycle.
Most of us have enough stress in our lives.  Between bills, the economy, family problems, sickness, conflicts in the world and a million other things, most of us have far more stress than we can deal with.  Watching the news or reading the newspaper can bring on a panic attack!
I need to learn that no matter how bad I think things are getting, I need to put it in God’s Hands and let Him help me with it.  Unfortunately, I have found that I tend to want to hang onto some of it and not let Him do so.  I need to learn to let go!

Thursday, March 17, 2011

Top 10 List

10 THINGS YOU DO NOT SAY TO SOMEONE WHO HAS MULTIPLE SCLEROSIS.  This was posted on the MS Facebook page the other day.  I really liked it and thought I would share it with you.
I think most of us have been taught all our lives to be positive, courteous and kind to everyone.  Sometimes, that tendency to be overly positive, is not the thing to be.  If someone is having a really hard day, a little sympathy goes a long way.  Not that most of us want others to think we are the only ones on earth who are having problems.  That is not the case at all.  It is just that if you are hurting, and it is an everyday thing, the above listed remarks are not the appropriate things to say.
When I meet someone, my first remark is not that I have MS.  It is not information that I share lightly.  I don’t feel that everyone needs to know. 
I do feel, however, that if I decide to share this information that is so very personal and one of the biggest parts of my life, it is your duty as a fellow human being to acknowledge that this is my burden and I have chosen to share it with you.  None of us with MS wants you to “walk on eggshells” around us; just realize that we are going through a never ending struggle that we accept and hope you will also.
We are all in this crazy world together and hopefully will hold each other up when needed. Those of us with MS will be more than glad to share your burdens with you if you will let us!