Chicken Or The Egg

Do you remember when your symptoms first started and what they were?  Most of us had symptoms years before being diagnosed and did not realize they were the onset of MS.

I remember when I was quite young and had terrible problems with my legs jerking and hurting.  My head would pound and it would seem like I was being shocked all over my body.  One of the doctors who examined me at that time was very perplexed by these things.  Most of the time, the problems were just dismissed.  My grandmother used to rub my legs with alcohol and tell me I was having “growing pains.”  I believed her, but wondered if that was what it was, why I was not six feet tall!

Many MS patients have symptoms from a very young age and get an MS diagnosis at that time.  Many more of us go so long and have a variety of doctors who try to find out what is wrong with us.  Even after they suspect MS, some still do not want to commit to a diagnosis and continue to try to find some other cause for our problems.  I have often wondered why they are so reluctant to diagnosis MS when the symptoms are so obvious and nothing else “fits”.

A friend of ours had a stroke a couple of weeks ago.  She is only in her mid-fifties and seems healthy.  She was at a church function and one side went numb and she just fell to the floor.  When she was taken to the hospital, they immediately treated her for her stroke symptoms and started a barrage of tests.  When the doctor came in to talk with her the next morning, he told her they had ruled out MS.  She was astounded that it was even an option.

I guess I am wondering how people get their doctors to really talk with them and take into consideration all they go through.  As I have said before, I have only had one neurologist who was attentive and really tried to help me.  It broke my heart when he moved out of state.  I am going to a new neurologist in January and hope that he is better than the one I have had this past year.

I don’t think it is just me that is unhappy with my doctor.  There are so many online patients who seem to have a problem with their doctor taking them seriously.  I am sure that most doctors have been taught that certain symptoms mean certain diseases.  Unfortunately, MS does not always fit into that little box that they want to put it in. 

Until we can make the medical community understand that MS is all over the map with symptoms, some of us will just have to suffer needlessly and go untreated.  It is really sad.

(I have read so much about people being sued for using pictures from the Web that I am afraid to do so now.  Unless it is one that I have taken myself, I don’t guess I will have a picture to go with my blog.  I really liked putting a picture with it……..made it so much prettier….. L)

 

 

My Little Helpful Pen

I have a pen upon my desk

It watches from its spot,

To write my little ideas down

It always helps a lot.

It is so patient sitting there

It never makes a sound

No matter how I stumble along

When ideas can’t be found.

I often think within that pen

Are found such wonderous things

The answer to all our questions

What joy that pen could bring!

It’s written down my inner thoughts

My joy, my grief, my pain

If I could not let some of them out

I would truly be insane.

He lets me open up myself

He lets me feel so free

He opens up that ball of grief

For all the world to see.

Sometimes it gets so tight inside

It ties me in a knot

The worry that the world can give

When despair is all we’ve got.

He helps me to remember then

That I have a King on high

Who sits upon His mighty throne

In His Kingdom in the sky.

Although I don’t have a simple rhyme

For all the joy he brings

My simple little friend called “pen”

Makes my heart just soar and sing!

……………And best of all…….he’s Purple!!!

Happy Thanksgiving!

Family, food and happiness

Blessings to all

May all of your sorrows

Be never recalled.

May your days be filled

With much joy and love

And all your prayers be granted

By God in Heaven above!

Wishing You A Blessed and Happy Thanksgiving!!
 

Bugs, Rugs and Drugs

This is the time of year when all the spiders and other critters seem to want to come in the house.  I realize that they do not want to be cold any more than the rest of us do, but I do NOT want to share my home with them!

We have a wood stove in the back sitting room.  My husband gets wood from different places to use in it.  I really love when the weather gets cold enough to light it and sit and watch the flames.  Unfortunately, the jumping wood bugs sometimes are in the wood he brings in and it is difficult to catch them.  If you have never seen one, they kind of look like crickets and jump like crickets do, except they are bigger and jump higher.  At least they don’t bite or sting like some insects.

The spider population has also exploded into a major problem.  The few times I have walked around to the front of the house, the spider webs were all over the trees and in the corners of the windows.  It was very disgusting.  It was also hard to clean and get rid of. 

There is also the problem of trying to do some Fall/Winter housecleaning.  I do not like carpets.  They smell and are so hard to keep clean.  We have taken up most of the carpet in our home and have wood floors.  They are so much easier to clean and do not have that “carpet” smell.  I am sure it is just me, but a scatter rug in front of the door and by the bed are enough rug-type things in the house.  Another reason we have decided to go with just plain floors is the tripping aspect of carpet/rugs.  I do not hang my feet as much and it seems more level on the floor.

Every time I go to see one of my doctors lately they want to up my medication.  I feel like I take a hundred pills a day and upping the dose does not feel like it makes any difference in the way my symptoms act.   But, I know that they do make a difference and I take them as prescribed.  I once thought one of my meds was not doing anything and missed a dose.  Big mistake!  After tossing, turning and hurting for hours one night I realized that I need this medicine and cannot quit taking it.  Most of my meds do not “feel” like they are doing anything, but not taking them would probably be a huge mistake and cause me a lot of pain and problems.

This blog is not really about anything in particular.  I am just “talking out loud” and getting things off my chest.  Sometimes it feels like I get all wound up inside and there is really nothing wrong.  I guess it is the helpless feeling of not being able to do things I need and want to do.  I share this feeling with many people.  Getting it out of my system helps me untie that knot that gets inside me and lets me step back and realize how very blessed and fortunate I am to be able to do the things I can.  So many of us can do nothing.

So, I leave you with this…………..if you come visit us you will find spider webs, jumping wood bugs and wood floors…..but more than that you will find a loving, happy home where you will be welcomed with open arms!
 

 

 

 

(I guess you can tell I am hoping for a snowy season!)

Too Much Time and Not Enough Brains

Most of last Tuesday was spent with Mother at the hospital in her heart doctor’s office.  As most of you know, the time spent for a doctor’s appointment is mostly waiting in an area full of other people waiting to see a doctor.  Some are old, some are young, but most are bored.  Many of them thumb through a magazine, glare at the muted TV mounted on the wall and watching the other people around them.

The past few months Mother has really wanted me to go with her to her appointments, where she used to be independent and want people to think she could handle everything on her own.  She has started getting confused about her surroundings when out in the public and cannot remember what her doctors tell her during her visits.  Having had several mild strokes recently, I am sure it is hard for her to think straight most of the time.  I know we must look strange to all we meet – an elderly wobbly woman with a cane being helped by a younger wobbly woman with a cane – it probably looks like quite the pair!

While waiting for Mother’s turn with the doctor, I was thinking about how much time I seem to waste sitting and being unproductive.  Most of the time, it is because my MS is causing me to be unable to do much of anything.  Sometimes it is wasted time waiting for appointments, standing in line at the grocery store or tossing and turning in the bed, trying to get to sleep.  If I could put all that time together, I bet it would be amazing how many days it would add up to be.

Often during those times when I am in the house, it is quiet and sleep won’t come, I think of countless things I need or want to do.  Most of the time I make lists, since my brain usually does not recall all those things I was thinking about doing.  Too many times, that list just grows old before I get to it and gets buried beneath all the other lists I make after that one.

When I was working, there never seemed to be enough time to get all my household chores done when I got home.  During most of those years, I was living near Mobile, Pensacola and New Orleans was close enough to visit often.  As you can imagine, those areas offered a variety of places to spend leisure time and engage in activities.  Unfortunately, there was usually not enough time in a week left for those type of things.  Although I no longer live near those places, there are still many activities to enjoy if I could.  Now it is not time that hinders my engaging in those things, it is my physical and mental inability to function well enough to do them.

I was reading a friend’s blog the other day and she was writing about people watching her.  I wrote a poem about that when I was a teen, which was quite a few years ago:

People watching

Caring not if I live or die

People watching

 Caring not if I laugh or cry

People watching

 Rushing, rushing from place to place

People watching

Seeing, seeing, but knowing not my face

People watching

Why?????

So many people waste a lot of their time wondering about and thinking about other people’s business. If they only knew how much most of us would like to have the use of that time………wouldn't it be nice to have too much brains and not enough time??!!!

 

Friends and Frustrations

Those of us who have dogs know that they are synonymous with friends (usually family!).  Buffy was five years old the 7th.  Believe it or not, we found her on Craig’s List.  We consider her a rescue dog because she was obviously mistreated.  She was seven months old when we got her and she was a nervous wreck.  She is still afraid of most people and shakes like a leaf when she sees a car or someone near the house.  Other than that, she is a spoiled, rotten brat!

 

 

We gave her an oatmeal bath (which she hates) so that she would be clean for her birthday.  She sat in my lap most of the day.  My lap and her pillow are her favorite places to be.  Like most of us, she is pretty much set in her ways and does not like too many changes to her routine.  Unfortunately, normalcy is not always possible.

Buffy is very allergic to fleas.  This summer, because of the very mild winter we had, the flea population exploded.  Although we use flea shampoo and a popular flea preventative, she is still prone to get fleas. Because of this, Buffy has had to become an inside dog.  She has had a hard time adjusting to this and often tries to run out into the back yard when the door is opened. Once she gets a flea it is very difficult to get her back to normal.  She gets raw places on her where the flea has bitten and cannot seem to quit scratching even when the fleas are killed.  Thus, we had to start not letting her go outside.

When Buffy first came to live with us she was so scared and shy.  We lavished her with a lot of love and attention to try and make her feel at ease.  As she began to trust us, she started to want all of our attention.  Once she realized that there was another pet in the household, she developed a strong resentment towards him. Hadji, our eighteen year old Indian Ringneck bird, accepted her as part of the family with no problem.  Buffy began to notice that we would take a bite of what we were eating to share with Hadji and she became more and more jealous of him.  Once, when he was outside of his cage and flew on the floor, she lunged at him and we had to quickly grab both of them for fear she would hurt him.  We are now very careful not to let her near him if he is out of his cage.  When we feed Hadji treats, she just glares at him and pouts.  She has not accepted him as her “equal” but she knows he is here to stay. 

 

 

As a person who deals with the ups and downs of MS daily, I realize how hard normal is to maintain.  I have to be ready to adjust to whatever each day brings.  This is true with anyone with an ongoing disease and/or disability.  No matter what we have planned for each day it can often change in an instant when symptoms change or become worse.  These times of adjustment are no respecter of holidays or chores that need to be done.  A shopping trip must be cancelled if we cannot walk that day.  Answering emails or other correspondence has to be put off if our brain refuses to process information that day.  Cooking and cleaning are cancelled if we are shaky or unable to hold things that day.  Going out for a nice meal is re-set on a day we are having problems swallowing.  There are many more that I could name, but each has their own set of problems and upsets to their schedules.

Older people that I would talk to when I was young always told me to enjoy my youth and do all that I could because one day I would not be able to.  Well………….that day has come!  Partly because of getting older and partly because of MS and Crohn’s Disease. I am trying to adjust to all of them, but sometimes get very frustrated with the process.  I think another symptom of MS should definitely be frustration!

What Would You Choose?

Years ago when the colonies were first being settled, the different nationalities of people brought with them old ideas to the new world.  Some were very good, but others were quite bizarre.  The Salem witch trials are one example of the horrors of some beliefs.

One of the tests to see if one was a witch was to tie their hands and feet and attach rocks to them.  The person (men were also accused at these trials and said to be warlocks) would then be thrown into a body of water.  If said person floated to the top of the water, they were confirmed as being a witch/warlock.  If the person drowned, they were said to be innocent.  Being that the person would drown (if innocent) or be burned at the stake (if guilty), it is obvious that you would not win either way. 

According to the Colonial Williamsburg Foundation website, “The extent to which the colonists’ lives were influenced by what we consider irrational and just plain silly is staggering.  their lives were informed by a firm belief in evil forces that stalked them daily. The devil, witches, and magic were, in some colonists’ minds, real and terrifying. Poor hunting or fishing could be put down to a magic spell cast by a malicious neighbor. Prodigies—anything strange and out of the ordinary in the natural world, from earthquakes, meteorites, and thunderbolts to oddly shaped root vegetables— would have people quaking with the expectation that the day of judgment was nigh. Charms and amulets were credited with keeping the devil at bay. Horseshoes nailed to our twenty-first-century suburban doors are a hangover from those days. Witchcraft—including sticking pins in dolls that resembled the intended victims—was blamed for the sickness and death of loved ones and livestock. It was not something to be meddled with.”

I guess to some of us that seems like the dark ages and that people could not possibly have believed those things.  But, we all have our little superstitions and “oddities” that we go by on a daily basis.  Although those times seem harsh, are we really any more “civil” in our modern world?  There are so many places where murder, war and starvation are still rampant and accepted.  To me, that seems worse.

I often wonder what I would be doing if I did not have MS.  Would I still be working?  Would I have a garden?  Would I be constantly changing the furniture around and redecorating?  So many things come to mind that I used to do when more able to function.  

But, I am more settled now, have more peace within myself and am fairly content with my daily (lack of?) activities.  Would I trade then for now?  Which time of life would I choose?  What about you…………..which would YOU choose??

Knock Knock……….Who’s There???

I don’t know about you, but one of the biggest reasons that I will be glad when the election is over is because maybe the phone will quit ringing so much!  If there was someone on the other end of the call that I wanted to talk to, it would be different.  I have never known a time when I wanted to talk to a recording.  I don’t care if the call is for the person I wish to vote for or not, it is still irritating.  Between telemarketers and political calls, the phone has been constantly ringing lately.

It is also the time of year when most charities start calling for donations.  I really don’t like that either as we have chosen certain charities that we donate to and do not have the finances to donate to everyone.  Sometimes, if one calls all the time and does not seem to understand that most of us can’t give to everyone no matter how much we would like to, it makes me not ever want to help them out.

I am sure that this has been going on since the telephone was invented.  I probably did not notice it so much in past years because I was at work most of the day and did not have to hear it all day long.  That may be the only reason (except for getting paid, of course!) that would be good to be back at work. 

I guess this is blow off steam day!  One of the most irritating things about MS is that you never know what you will wake up to.  Some days it is intense burning; some days sharp pains; some days fatigue so bad you can’t even dress yourself; some days legs of jello, etc, etc, etc.  Some days, of course, it is all of the above and more.  I think if I had the same symptoms every day I could adjust to them better.  Since that is not the case, I stay off-kilter and can’t seem to be able to deal with what I get.  I know all of you are that way, but it sure is enough to keep your nerves on edge.

My psychiatrist says that I should work to keep a peaceful, uneventful day.  Obviously she has never had MS!  When something is working directly in your brain and nervous system to tear it apart, it is hard to be peaceful and easy-going.  Most days, I just try to deal with the buzzing and pain and not be too much of a bother to my husband.  I also work on not taking my irritation with my disease out on others.  Sometimes, as most of you know, that is not easy.

I guess most days are like a knock knock joke……….who’s there is a real joke anyway!

Great Aunt Gertrude

Remember great aunt Gertrude?  Yours may have had a different name, but everyone had an aunt with some of the same characteristics. She was always the one who smelled like BenGay and mothballs.  She would give you a big choking hug when you saw her and always kissed you on the cheek.  Most people considered her one of their favorite relatives because she seemed to always be in a pleasant mood and always made them feel important. Most of that does not apply to me, but some of it is beginning to.

As with most with MS, I have a lot of pain.  Although I have medicine for the pain, it is not always enough.  I use a pain relieving cream sometimes with the medicine.  It has a really distinctive odor.

At first I balked at using it when we were going visiting or shopping because of the smell.  After my husband told me several times “had you rather hurt or smell a little”, I quit worrying about the smell and instead learned to enjoy the relief from the pain.  Relatives understand the smell and I have never had anyone just stop and hold their nose when I walked by them out in public.  I could probably live with it even if they did. J

For a long time I tried to suffer through the pain and only take aspirin-type pain relievers.  If you have ever had chronic pain, you know that it wears you down physically and mentally.  It is not worth trying to be “brave” and try to “just take it”.  Although the pain is still there most of the time, the medicine does cut it enough that it is bearable and usually does not interfere with my day.

Reading some of the posts that people have on Facebook and other sites, I feel so thankful for the little aches and pains I have rather than the major ones that some others have.  It is so sad that there are many times that they cannot find something that helps them and they are left to just deal with it as best they can.  What is even worse is those that have no pain at all because they have no feeling left in their body.  Many are in wheelchairs and have to have around the clock care.  Most of us fear getting to that point.

There are so many medicines to choose from for everything. I remember my grandmother telling me that shopping was so much easier when there were not so many choices of everything.  I agree.  Each medicine tells us that it will cure/help what is bothering us.  It usually doesn’t but we keep trying things to see if one will.

 

Maybe we should go back to some of the things our grandmother’s used to treat ailments. They seemed to work for them and they were a lot heartier than most of us are. Smelling like great aunt Gertrude may not be such a bad idea after all!

 

Witches At Our House!!

We had some witches at our house last night!!!

One was rather old………..

The other a little younger……….

The children who came by seemed to enjoy them!!!

Hope everyone is safe and those in Hurricane Sandy’s path are getting their lives back together.  I know, from experience, that it will take a while and seems like it will never come together again………..but it will………and we will all be praying for you!!!