Slowing It Down

Like most towns, ours has a K-Mart Super Center.  It is in a complex with a McDonalds, Biscuitville, Bojangles and other such businesses.  Sometimes, when Howard and I are going shopping, we drive by and get breakfast and park in the K-Mart parking area.  It is a large area with many trees around it.  At the time of morning that we are usually there, we have the place to ourselves.  That is, except for the birds.

One of the reasons we love to go there is because of the many types of birds that hang out there.  It is obvious that a lot of people go there to eat because as soon as your park, they start hopping around the car anxious for any piece of food you might offer them.  When we do offer them a morsel, they immediately pounce on it.  There is a definite pecking order, but usually this is carried out with no squabbling or violence. Unlike the human population that inhabits this earth with them, they seem to accept each other and wait their turn. We have seen cardinals, catbirds, gulls, sparrows, blackbirds, crows and many more birds while eating our breakfast. 

Most of us have spent the majority of our lives in a hurry.  There is an AT&T ad that asks, “which is better….slower or faster?”  I doubt there is anyone who would answer slower (except that silly little girl in the commercial!).  I have found that I have missed so many wonderful things by being in the fast lane with everyone else.  As I am having to take my time eating (so as not to choke), walking (so as not to fall), talking (so others can understand my words) and so forth, I am noticing so many things that were just blurs in my former life.  I am totally amazed at all I have been “too busy” to notice.

When you wake up in the morning do you jump out of bed, go to the bathroom and start getting dressed?  Do you ever lie in bed for a moment and watch the sun begin to light the eastern sky with its beauty? 

When you are driving/riding down the road do you notice the trees along the way?  Do you see the way they change each month into something different, whether summer or winter?

Have you ever watched as the birds fly around your home?  Some of them sing beautiful songs and others just flutter around and see what they can get into.  Some fly solo, in pairs or in great flocks.  No matter what their habits are, each is a wonder all its own.

Have you noticed the people you pass each day?  We all see people in the stores, on the streets and riding in other cars.  Do you pay attention to them or just go on your way?  Do you see the sadness, happiness, sorrow, joy, pain or other emotions that run across their faces?  Are they in as much of a hurry as you are and ignore you also?

As I have slowed my pace in life, I wish I knew more about photography.  There are so many great scenes I would love to catch on film.  I wish I could take them out of my mind’s eye and put them on paper.

In my lifetime I have been in all but four of our fifty states.  I have seen so many beautiful places and things.  I have few pictures of those travels.  Most of my journeys related to work and I was not prepared to film them.  Many times I would just stop and stare at some wonder that I suddenly came upon and was not expecting.  It is one of the sad things in my life that I have nothing to share with others of these things.

I don’t expect to suddenly start taking pictures of everything I see.  I do hope that I take the time to enjoy the things I do see.  Maybe one day someone will invent a way to download all the great moments we have stored in our brains.  I hope they do it soon………..my brain is getting so short-circuited that they would have to defragment it several times to make any sense of what they find!

Planning A Party

When I was in my teens I had a terrible ulcer.  At one time I spent a few days in the hospital and received treatment intravenously.  I took medicine for over ten years for this problem.  Eventually it calmed down enough to where I could get off the medication if I was really careful with my diet.

Right now I think it is trying to cut my stomach into little pieces.  I feel like there is glass floating around in there and trying to find a way out.  I hope that it will ease up soon.

I almost want to cry.  It is not that I am in any worse shape than anyone else, and definitely in better shape than a lot of people.  But right now, I am wanting really bad to throw a pity party.  I am inviting no one to share it with me.  I will bring my own party favors, food and entertainment.  I do not plan on it lasting a long time, just long enough to get some of this pent up emotion out.

We have talked about the camel and the straw before.  It really is the small things that throw one for a loop.  When we face big hurdles, we have prepared for it and meet it head-on.  The little things sneak up on us.  They are lurking around each corner just waiting for the chance to pounce.  Once they see us, they watch us for a time to hit us at just the right moment.  They really are quite sneaky little devils.

I am wondering how we could make everything in life a circle.  That way no little things could hide behind corners and catch us by surprise.  We would see them coming and be able to prepare in advance for their arrival.  Not only that, we could continue to travel in a circle and they would never catch up to us.  Yep, seems like a plan to me.

If we all held hands, we could watch each other’s sides and backs.  Each person would be responsible for the person on their right and everyone would be covered that way.  No one would let the person next to them get surprised because the others would find out and not watch out for them. 

Right now I am considering what kind of party I might have.  I am hurting too bad to start the party yet.  I am still trying to figure out what other type of medicine I can try to see if it helps.  It is hard to plan a party while plowing through the medicine cabinet.  I might wait a while to think about that party……….maybe the pain will ease up a little so I can think about it………….maybe it will quit hurting in a short while and I won’t need a party…..oh yeah, I like that idea better!

On Demand

I have really gotten addicted to the On Demand feature of our cable system.  There are several programs that I like to keep up with and never seem to turn the TV on at the right time to see this.  With this feature, you can watch them when you wish.  It also allows you to watch certain movies when you want.  One of the best features of this is that there are very few, if any, commercials.  That is a big plus to me.

I usually spend several hours sitting in bed watching TV before I manage to get sleepy enough to go to sleep.  It is often very boring.  There are so many shows on that are obnoxious to me or ones that I have no interest in at all.  A lot of movies also fit into one of these categories.  I don’t feel that I am all that picky, but there are some things I just will not watch.

Most of the comedy shows that are on now are not in my taste.  They are either overly vulgar or are making fun of something I do not think should be made fun of.  I like comedy that is funny without having to involve curse words, sexual innuendoes, or intimidating someone.  I guess the type of comedy that Red Skelton and Bill Cosby used is out of date.  Both of them stated often that if you have to use off color language or throw barbs at someone, you aren’t really funny.  I agree.

I really am not writing this to get on a bandwagon.  My initial though was “wouldn’t it be nice if you could On Demand some pain medication, sleep aids or coolness?”  I think that would be a wonderful idea and some really smart somebody should invent this.  It would make a world of people grateful and happy and make that person a gazillionnaire.

It would be offered by all the cable and satellite companies at a special rate that only people who qualified for it would be allowed to get it.  The qualifications would involve obtaining the doctors records and/or a disability acceptance letter.  Hopefully, this would help cut out those who just wanted to get high and stay in bed all day.  I know that there are always ways to get around things, but maybe it would be monitored closely enough and very few would get it that did not deserve it.

It would probably involve some type of box one could fit into that would have the necessary equipment to perform whatever was needed from it at the time.  There would be a cable from the box that connected it with whatever provider one was using.  This cable would feed the information to the provider and receive the signal to allow the box to perform its task and renew any medications and such that were needed.  All insurance carriers and Medicare and Medicaid would be under a mandatory rule to carry this equipment.  No one who needed it would be turned down.

As I have said before, I would love sometime to demand a visit with Peter Pan in Neverland.  I don’t want to stay there, just visit.  I would also like to demand to win the lottery.  Then I could help all my family and friends who needed a little assistance and make my children and grandchildren financially independent.  I would also like to demand Peace On Earth……… but that is in the Hands of God and He has not appointed me His assistant or permission to take over His job!!

Hotter Than…….......….Whatever!

I think it is going to be one of those summers.  The temperature is supposed to be in the mid-90s most of the week.  I am not sure I am ready for this.  I know I don’t have a choice.

It really bothers me that there is no way to explain to someone what the heat does to me………..and I am not talking about 90s, I am talking about 70s.  If the sun is bright, the 60s are sometimes hard to deal with.

I was sitting with Mother in the waiting room at the hospital the other day and started talking with the lady on the other side of me.  She commented on the fact that I would pick up a magazine and fan once in a while.  She said she knew how I felt because she had hot flashes for many years.  She was over them now and was so grateful.  I told her that I have MS and getting overheated is a constant problem.  She looked at me like I was a visitor from Mars.

I don’t seem to be able to get across to anyone that MS heat lasts practically all the time.  It is not night sweats, day sweats or in-between sweats.  It is heat that radiates from your insides and nearly takes your breath away.  It makes my head pound, my legs and arms weak, my vision blurry and my thoughts turn to mush.  If it goes away it is only because I am in front of the a/c or it is freezing outside.  And, sometimes, it is still there even then.

The tingling sensation that most of us feel intensifies.  There are millions of little shockwaves running up and down my legs and arms, feet and fingers and sometimes my face.  Although it is not exactly what one would call a painful sensation, it is highly unpleasant.

Per the MS website: “Many people with MS experience a temporary worsening of their symptoms when the weather is very hot or humid or they run a fever, sunbathe, get overheated from exercise, or take very hot showers or baths. For example, some people notice that their vision becomes blurred when they get overheated—a phenomenon known as Uhthoff's sign. These temporary changes can result from even a very slight elevation in core body temperature (one-quarter to one-half of a degree) because an elevated temperature further impairs the ability of a demyelinated nerve to conduct electrical impulses.  For many years, the “Hot Bath” test was used to diagnose MS. A person suspected of having MS was immersed in a hot tub of water, and the appearance of neurologic symptoms or their worsening was taken as evidence that the person had MS.”  I don’t know about you, but I am very thankful that this is no longer used as a method of making a determination of MS!

My husband probably gets tired of me asking if my face is flushed.  To me, my face sometimes feels like it is radiating (kind of like a bad sunburn feels) and should be beet red.  Sometimes it feels like my arms or legs feel like that also.  One of the worst places that burn and tingle is my back…….especially down my spine.  He often rubs a pain cream on it which usually helps.  It is hard to let him do this since it is so sensitive to the touch when having a flare up.  The cream is cooling, though, and worth the initial pain.

I have talked with several people who are so excited about going to the beach this summer.  I listen and smile, cringing on the inside at the thought.  I am happy that this will make them happy and hope that it comes to pass and they have a wonderful time.  As for me, I will stay at home in the coolness of the a/c, wave bye to them and wish them well!

 

 

Strength in Gentleness

My Grandma raised me.  My parents worked at night and she took on the job of taking care of me.  I am sure that it was quite a job.  I was skinny and full of energy when I was young.  Nothing like what I am now.

When I was born, she was 68 years old.  I was the child of her 10^th child.  Needless to say, she already had a lot of grandchildren by the time I came into the world.  She had raised her children and now was ready to raise one of her grands.

My grandfather died when my Daddy was 9 years old.  Grandma still had several children at home at that time and I am sure it seemed like quite a burden to face when he died.  One of my uncles returned home to help her.  He was a kind, sweet man and eased her burden by chipping in to help. 

My first memories of grandma were when she was in her 70s.  She would wash clothes in a ringer washing machine, put a basket of wet clothes on her hip and walk down the back steps to the clothesline to hang them to dry.  I often wonder how she did the things she did.  She would sweep, mop and vacuum the house. She would cook great meals and still have time to play with me.  When she bought a TV, we would spend hours watching Mickey Mouse and Howdy Doody.  She was never too busy to cater to a little girl who totally adored her.

As grandma got older, her spunk didn’t.  She fell and broke her arm one time when she was in her 80s.  I remember the doctor telling her that she would probably never regain the use of her arm at her age.  A couple of months later she gleefully raised her arm and showed him that this had not defeated her.  Although she was a gentle and kind person, she had a quiet determination that I always admired.

Many days I sit here and wonder what MS will hit me with next.  Every day I fight to keep doing the things I can and hoping that this disease will not progress any faster than it has.  Even though I work hard not to do so, sometimes I feel sorry for myself and angry that I can no longer go places and do things that I could just a short few years ago.  Sometimes I would be so easy just to give up and wallow in self pity.

When I get this way I often see grandma in my mind.  Her strength always shines through whatever task she had to do on any given day.  No matter what was going on, I have never heard her raise her voice or stomp around in anger.  She was quiet, soft-spoken and the most loving person I have ever known.  

When she died, I thought my world would end.  I was 24 and not at all ready to give her up.  Even though she was 91 years old and bed-ridden, she never complained and always had “I love you” on her lips.  It was the last thing she ever said to me.  Part of me will always ache with the need to have her hug me one more time and tell me this.

I hope in some small way I have inherited a part of her courage.  I know that many times I fail miserably.  But when I do, thinking of her lifts me up and puts the fight back in my spirit.  I know this is what she would want me to do.

When I get to Heaven it will be so wonderful to be with her again.  I know that God loved her so much and wanted her close to Him.  I understand that.  I am anxious to get that hug from her.  I hope she is still singing those little songs she used to sing to me.  I bet it makes God smile…………

 

To Hear or Not to Hear

One of the symptoms of MS that has really bothered me lately is hearing loss.  Per the MS website: “Hearing loss is usually associated with other symptoms that suggest damage to the brainstem - the part of the nervous system that contains the nerves that help to control vision, hearing, balance, and equilibrium. Hearing deficits caused by MS are thought to be due to inflammation and/or scarring around the eighth cranial nerve (the auditory nerve) as it enters the brainstem, although plaques at other sites along the auditory pathways could also contribute to hearing problems. Plaques are abnormal areas that develop on nerves whose myelin-- the fatty sheath that surrounds and protects nerve fibers--has been destroyed. Plaques cause the nerve impulses to be slowed or halted, producing the symptoms of MS.”  Not very understandable, but meaning that MS can cause hearing loss due to the damage to the nervous system that controls our senses.  (I often wonder why explanations can’t be just straight-forward and not rambling all around with words the average person doesn’t understand!)

I have noticed lately that my hearing is becoming more and more damaged.  I often find myself cocking my head to try and pick up more of the sound waves that are coming from the direction of something I want to hear.  I am not sure that it helps much because I still have trouble hearing what I want to hear.  It is very irritating.

As I have mentioned in previous blogs, my husband does not hear well at all.  He is constantly asking me “what did they say?”.  I am beginning to not be able to answer him.  I have tried to get him to go to the doctor and get his hearing tested to see if something can be done for him.  He keeps putting it off.  I don’t think I will be like that.  I am going to talk with my neurologist in July to see if there is something that can help with my hearing loss.  It bothers me too much not to get it checked.

I am not pessimistic with this problem, but I do fear that it will be one of those things that I just have to learn to deal with.  As with speech and vision, MS often damages these and nothing can be done about it.  I have periods of time when I do not talk very well and worry that it will stay that way.  Fortunately, so far, it comes back to normal after a while.  One day it may not.  I will deal with that problem if/when it happens.

I do not mind at all being fitted for a hearing aid if that will help the problem.  I have talked with a lot of people over the years that balk at this.  They always say that it is unattractive and only for “old people”.  If it means the difference between hearing and not hearing, I do not care if it is the ugliest thing on earth.  I had rather hear than not hear.  As for being for old people, that no longer bothers me either.  Everyone that is blessed enough to get older learns that things that we taboo when we were young is a necessity as we age.  Since MS often greatly speeds up these problems, age has become a moot discussion.

We live in a world obsessed with looking young, being thin and being active.  MS takes away a lot of these options.  Most of us with MS are not all that active and our diet consists of things that we are able to consume without interfering with our meds.  As far as looking young, this becomes the least of our worries………………trying to keep as much in the game of life as possible becomes our number one priority.  Looking young is WAY down the list, if it is still on it.

My husband and a friend of ours started losing their hearing on a parallel course.  Both spent most of their time saying “huh” and asking for the conversation to be repeated.  Our friend had his hearing checked and was told that the problem he has cannot be fixed.  I think that Howard might be afraid that this would be the answer he would get also.  I do hope that he will one day get it tested to see if help is available.

Until something can be done for us, I guess we will just go along with hearing less and less of what goes on in our day.  There will be a lot of “huhs” in our routine.  I wonder how hard sign language is to learn………….. J

Exorcism

According to the New Advent website, “Exorcism is (1) the act of driving out, or warding off, demons, or evil spirits, from persons, places, or things, which are believed to be possessed or infested by them, or are liable to become victims or instruments of their malice; (2) the means employed for this purpose, especially the solemn and authoritative adjuration of the demon, in the name of God, or any of the higher power in which he is subject.”

Like a lot of people, I am fascinated, yet horrified, at the thought of exorcisms.  It is something that is highly contested as being real and has been the subject of countless books, articles and movies.  It is intriguing to many of us to think of the fight of good and evil so apparent in a human.  That is also the horror.  Being possessed is frightening to those of us who believe it can happen.  An exorcism is quite an ordeal to go through both for the victim and the priest performing the rite. 

Sometimes I think of MS and other diseases as possession. These diseases occupy our bodies without our permission and refuse to let us be free from them.  Being possessed by something that you do not want is frightening.  It is a constant battle of will between us and our disease(s). 

I guess in some ways our doctors could take on the role of the priest in the exorcism rites.  The doctor watches our symptoms and tries to figure out exactly what is wrong with us.  He offers treatments in the hope of easing our problems.  If that does not work, he runs tests and tries again to find something to make our lives easier.  But, unlike the priest, he is not able to completely erase the cause of our problems.

As in an exorcism, there are books to guide in the quest to conquer the evil at hand.  Each step is written out for the one who is trying to help the victim to follow.  If progress is not made at first, the “helper” may start over and try to retrace his steps to see if something was missed or misread. As some priests find out during an exorcism, no matter how closely they follow the rites or how strong their belief in the process, the possession is not easily removed.  Some of us have experienced doctors who eventually just quit trying and ease us into the back of the line of their patients.

I have been wondering if there could not be a different type of specialized doctor for MS or other diseases.  This doctor would not only have the training for these diseases, but would also be a person who was interested enough in his patients to be willing to explore different options apart from the norm.  This doctor would try to heal the body and the mind.  As most of us know from experience, when the body is constantly fighting us, our mind gets tired of the process, too.  As our body deteriorates sometimes the mind goes right along with it.  Keeping both strong is often impossible.  Keeping one strong is hard enough.

The special doctor would never tell us: “It is not a symptom of”, “this should have worked”, “there is nothing left to offer you”, “you need to go see a (blank) doctor”, etc.  This doctor would stick with us through thick and thin and always try his best to help us, not pawn us off on someone else because we don’t fit into his scheme of things.  I know what you are thinking, this doctor does not exist.  You are right.  As far as I know, he doesn’t.

But there are some really good people who are trying to make a difference in this world by stepping out of the box.  If one thing does not work, they try something different.  It may not be what they have learned in medical school to do, but it is something that they feel might help the situation.  I really feel, deep in my heart, that there will be a different breed of doctor in the near future because people are beginning to demand it. 

Until then, I will continue my search for a doctor who performs exorcisms.  If you find him first, please give him my name!