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.

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!!!!!!

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!

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!

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!

ZZZZZZZZZZZZZZZZZ

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!

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

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

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!!!!!!

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!

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!

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

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!