One Of Those Days

I actually got out of the house this morning.  It was only to go to Walmart to pick up a few groceries but I was thrilled to be able to do it! After being stuck in the house for three weeks I was getting a little stir crazy.  Not that I am not happy at home because I am.  But sometimes you just need to get out and see another environment and other people.  I was beginning to think that this cold/flu was going to last until next year this time.  I am glad that it is finally beginning to get a little less intense.

Some of the trees have started changing colors and are looking really pretty.  There are pumpkins out at the fruit markets and autumn decorations in some of the store windows.  Although many are whining about summer being over, I, for one, am thrilled.  This is my favorite time of year and I am getting excited about all the changes that happen during these next few months.

My husband and I will have our wedding anniversary this Saturday (29^th).  With all the problems he faces in taking care of me with my MS and having my mother living with us, I could not ask for a better husband.  He is patient, kind, loving, caring and always trying to do the best he can for me.  I thank God every day for him.

We lost a dear friend last night.  John Stout was a wonderful man who always had a smile and a big hug for everyone.  He will be greatly missed by all who knew him.  Please say a prayer for his wife, Gray, and family as they go through this grieving period.  (Their anniversary would have been this Sunday so it will be especially hard on Gray.)

My brain has been so clogged up with cold and I have felt so lousy that I have barely been able to get up and move around a little.  I have thought of several ideas for blogs but been unable to get them written out.  I hope to get back into my stride next week.  I miss writing and having your comments to think over. 

I have been approached by a lady from Spectrum Science about doing a follow up blog on one I posted back in June on Pseudobulbar Affect (PBA).  I hope that I will be able to put it together in a manner that will be interesting to you.  The couple I am interviewing are really fascinating and I hope to have that finished soon.

At present, I am keeping the tissue people in business and hoping to get back into a REAL life soon………….have a great weekend!!!

 

The X Person

I wrote my name, address and telephone number on the form.  I put an X by all the symptoms I have.  I circled yes or no on the questions asked. I stood on the scales and my height and weight were written down.  I am #7983126 in your files.

I sit at the desk next to yours.  I hear you trying to hide your snickers when I walk into the wall or bump against my desk.  I hear the frustration in your voice when I can’t find the words to answer your question.  I see your impatience when my fingers won’t hit the right keys on the keyboard or aren’t able to pick up my pen to write.

I am trying to stay out of your way.  I hang onto my shopping cart so that I can walk and not have to ride the motorized cart.  I am not purposely trying to hold you up.  I hesitate before I reach for an item to make sure that my hands are working and I won’t knock everything in the aisle over.  I am sorry you have to go around me.  I sometimes forget what I am looking for and have to stop and try to regroup my thinking.

I am sorry I don’t call you more often.  I know you aren’t crazy about emails.  Emailing is easier for me.  When I email, I can stop and gather my thoughts without trying to just spit something out.  I not only can’t think of the words I want to say, I sometimes can’t make them come out of my mouth.  My mouth will not always say the words my brain is thinking.

I am sorry you are in such a hurry and I am holding you up.  I would yell, cry or jump up and down (actually that is a lie….I CANNOT jump up and down!) if it would help you understand my problems.  I live with a monster.  He is present every minute of every day of my life.  I wish you could look inside my body and see him.  He is constantly moving and trying his best to make my life as miserable as possible.  But, I will fight him as long as my body will let me.  It is you that gets me down more than he does.  Not only do you not understand the battles I fight each day, but you don’t even seem to have the desire to try and understand what I go through.  It is so much easier to shrug and go on your way than it is to offer your friendship.

It is so much easier to ignore someone’s pain than to offer a shoulder of comfort.  It is so much easier to show disgust than to be understanding.  It is so much easier to hate than to risk giving love.

I think, in reality, YOU are the one who has the handicap.

Two Different Sides

One of my MS buddies was talking yesterday about her changing moods.  She was blaming some of it on the weather and some of it on the MS.  I agree that it was probably both.

I really notice that I have zero patience a lot of the time.  I can control it to a point and not lash out, but it is all I can do sometimes to manage that.  I am calm on the outside, but raging on the inside.  Unfortunately, there is usually no reason for it and I am left trying to decide why I have so much rage.

Pain is one reason, I think.  Most of us with MS have a certain degree of pain every day.  Some fortunate few do not, but most of us do.  The harder the pain is to deal with the less control we have to deal with other activities around us. 

Worry is a big one.  Whether we admit it or not, all of us worry about where this disease will end up taking us.  For many there will be moderate limitations to daily life, but they will be able to function in a normal world and get by.  For many of us, that is only a memory.  The yearning for that lost life only seems to make the present one more unable to be tolerated.  Not only that, the fear that it will progressively get worse and worse makes us sometimes not enjoy what “normal” we have.

Misunderstanding by others is a major one also.  Most people have no clue what we go through each day.  Not being able to keep up with what we once did is not a choice, it is something that was forced upon us.  Being ridiculed and criticized causes a lot of strain on many of us especially when it is done by our family and people who are supposed to be our friends.

Worthlessness is a major one with me.  I feel so worthless now.  There are a few things I can do, but, for the most part, I sit here at the computer and try to keep my mind busy and not get too stale.  My body is useless for doing very much housework, cooking and other things that once were a major part of my life.  My mind gets so into thinking about cooking and cleaning and such, but my body just will not cooperate.

The list could go on and on, but I will stop here.  No, I think I will add one more……..people who have loads of advice but don’t have a clue what they are talking about.  So many people say that if you would exercise, eat this or that, take these vitamins, etc, you would get well.  Maybe that works for some.  For some of us these things either don’t work, or are things we cannot do.  I have been told so many times that if I would just get up and exercise and move around I would get better.  The more I move around the weaker I get and the weaker I get the more likely I am to fall.  Most of the foods on diets that are supposed to change your life are so expensive that I can’t afford them.  It is a dead-end road.

I used to hear people talk about driving beside someone who looked very pleasant and happy.  But, when another driver did some little something that really didn't amount to much, the person would go into a severe bout of road rage. At one time I would not have been able to understand this.  Now I can.  It only takes that one extra little something to really mess up a person’s day!!!

Kind Of Like Swallowing A Whale

I have been having trouble swallowing for quite a while.  Sometimes it feels like I am trying to swallow a large rock when it is only a small bite of potatoes or something.  At times it is very scary because I am afraid of choking.  This condition is known as Oropharyngeal dysphagia.

The PubMed website states that “Oropharyngeal dysphagia is the term given to swallowing disorders.  They are commonly observed in multiple sclerosis (MS) patients. The complications of dysphagia are common causes of morbidity and death in late stages of MS. However, dysphagia in MS usually receives limited attention.” Most sites give this condition limited or no mention in their list of symptoms of MS.

The condition affects me on a daily basis.  It does not matter if I am trying to swallow something liquid or something solid, if the condition is active, I cannot make what I am trying to swallow go down.  Sometimes I just give up and try to eat or drink at a later time.  Like with many things I have experienced on my journey with MS, my doctor just shrugs and does not comment.

I was thinking that in a perfect world a doctor would not be allowed to practice in a field in which he has not had an experience with the condition.  In other words, if you don’t have a disease, you should not be considered “an expert” on that particular disease.  I know that is an unrealistic statement.  I do not wish any type of disease/ailment on anyone.  I do feel that if you have never had a cold you have no idea what one feels like.  I feel the same way with MS.

Although I have never heard of a neurologist that has MS practicing in my area, I am sure that there are some out there.  Those who have that person as a doctor would seem to me to be very fortunate.  He would have to have more patience and more understanding with off the wall symptoms than someone who has never gone through these things.

As those of us with MS know, it is hard to put your finger on a set list of things to expect with this disease.  No matter what any particular website, medical book or doctor may have, they do not have a full and complete list because there is none.  The MS community is a varied and multi-symptomed (My spell check says that is not a word, but it is now!!) group. 

Maybe we should find a site where we can all go and list our symptoms.  Each time a new one develops, we can add it.  The site would be set up to add the same ones together and make a list of all of them.  I wonder just how many there would be and how many are actually listed as MS symptoms.  I am sure that the medical community would not agree with all of them.

By the way, I was looking for a picture to put in this blog about swallowing.  Unfortunately, all the swallowing pictures seemed to be about snakes swallowing their prey…………no way I was putting that on!!!

A Vicious Cycle

My Daddy died twelve years ago the 24^th of this month.  When he was admitted to the hospital, it was overflowing with patients.  My mother and I had to sleep in the lobby on chairs during the first few days he was there.  I got a blanket from one of the nurses and slept on the floor some of the time.  He was there for ten days before he died.

During the time I was sleeping on the floor, I picked up a staph infection.  It basically affects the area in and around my nose when it flares up.  It took three doctors and numerous tests to decide what it was and the best treatment for it.  It took almost six weeks for it to be controlled.

The next couple of times it erupted, it really showed off!  The whole area in and around my nose was broken out with blisters and it spread nearly down to my top lip.  It was awful looking and I hated to be seen.  I was in the workforce at the time and tried to keep it covered as much as possible.  I would have hated to be around someone who looked like that and knew that the people in my building were not happy to be around it either.  The only reason I even went to work was because the doctor said I was not contagious…………and the fact that my employer was not understanding of people being out of work and would probably have fired me.

I mention this because the cold/flu or whatever this crud is has made it flare up again.  If you will notice, it is close to the time that I originally developed it.  For the past twelve years, when I have had a flare up with this strep germ, it has been in the month of September.  I find that really odd.  It is like it has an anniversary schedule and is sticking to it.

Someone was talking the other day on one of the MS websites about having certain symptoms in certain months of the year.  Some people were making fun of him, but others seemed to agree that their symptoms seem to come in cycles.  I am talking, of course, about those of us who have relapsing-remitting MS.  Although the symptoms seem to change and come and go, it always gives you something to deal with and never leaves you alone.

As far as medical science has progressed with all kinds of diseases, I really wonder how much it really knows.  Quite a few medical facilities have all types of websites that tell the what and why of different diseases but rarely understand actually having that particular disease.  All of us with MS have talked about this many times.  Although doctors seem to understand what is happening to us, they don’t really understand how it affects us.

So, here I sit, blowing my nose, coughing, sneezing and putting  medicine on my infection…………it will get better……..I just wish it would hurry up and decide to do so!!!!!!!!!!!

Sneezy, Sniffly, Stuffy

September 12, 2012

I really hate this!  I am sneezing, sniffly, nose stuffy and generally achy and yucky!!!!   I know…..it’s that time of the year.  Doesn’t make one feel any better though!

I was hoping to get a few things done this week.  So far I have blown my nose a couple of thousand times and sneezed almost that many.  Soup is about the only thing that tastes halfway decent and I just want to lie around and do nothing.  Not that I don’t love soup…….it is one of my favorite things.  I guess it is like most things, if you have to do something it is not half as much fun as if you want to do it.

I was talking with a couple of my MS friends and they are having a rough time with sinus infections and colds also. One of the problems with those types of illnesses is that we are already burdened with a bad case of fatigue and this does not help the situation.

I am still thrilled with the cooler weather, though.  It is wonderful to get up in the morning and feel the crisp air.  It seemed like it was going to stay hot and humid forever. 

The trees are also trying to start showing off their pretty autumn colors.  Some of them are really beginning to look nice and colorful.  Like snow, the world in your own backyard takes on a new look and doesn’t seem like the same place. 

I am sitting here wondering where this autumn and winter will take us on our life’s journey.  I am getting more and more unable to walk very far and cannot walk at all without help.  We are, as all are, getting older.  My mother is getting more and more to the point where we don’t feel comfortable leaving her to care for Buffy and Hadji.  I hope we will not get to the place where we will be stuck at home all the time and become stifled in our lives.  I can pretty much entertain myself, but my husband and I do enjoy short trips, going out to eat and visiting friends and family.

Life is so full of ups and downs.  When our nephew, Jamie, had quadruple bypass surgery Monday, it almost seemed surreal.  He has always been such a lively, happy person who made everyone around him feel welcomed and loved.  Although I thank God for Jamie’s surgery going well, I wonder how he will be from this point on.  I hope it does not change him into a fearful, sad person.

I remember when I fell and broke my leg six years ago.  Although it mended nicely, I have been extra cautious about getting up out of my seat and starting to move forward.  I guess all happenings in our lives change us in one way or the other.

In talking with one of my MS friends today, she told me that there is another twist and turn in the neurology department in our county.  I have mentioned that there has been quite the turnover in that department and I have been under the care of three different doctors there in the past seven years.  Annie informed me that her neuro is now leaving that practice.  What is with these people?  Do they not realize that just up and leaving their patients to fend for themselves is not right?  No notice, no reference to another doctor, just leave!  She is now in the same boat I am in seeking another neuro.  Wish us luck!!

I hope all of you are well.  I am going to warm some chicken noodle soup and see about getting ready to go upstairs and take it easy for the rest of the day…….after I blow my nose………and spray my nose……and sneeze……and cough……

 

The Good and The Bad

We had a very interesting weekend for a change.  Unfortunately, one part was very good; the other part was very bad.

One of our nephews had a heart attack.  He is a very sweet man and the last person that one would expect to have a problem like this.  He is having quadruple bypass surgery today and our prayers are going up for him and his family.  He has always been the life of the party and so much fun to be around.  Please send up a prayer for him during your day.

The other thing that happened this weekend was that one of our nieces got married.  It was a beautiful ceremony and they seem so very happy together.  We were privileged to witness this union and enjoy the fun and fellowship at the reception after the service.  She was a very beautiful bride and he a very handsome groom.

I was thinking how strange life is sometimes.  Most of us MSers have to think about ourselves so much that we sometimes get lost in our own little world.  There are so many things going on around us and we often lose track of them.  It is not that we are selfish or don’t care what is happening.  It is usually that it takes us so much longer and uses so much more energy to do normal things like walking, talking and eating that we don’t have the time or energy to do much else.  It is frustrating for us and makes us feel so helpless in situations where we really want to be useful and able to help others.

In years past I would have been one of the ones helping with the decorations and food for the wedding.  Now, I am just an onlooker.  In years past I would have been one of the first to the hospital to see what I could do to help.  Now, I am sitting at home waiting on news of how things are going.

I am thankful that most of our family understands these things.  I know that many have families that don’t and it causes them a lot of pain and problems.  I have a friend who has a real problem with her parents and siblings because they just “don’t get it”.  She is constantly being asked to do things that she cannot do and then criticized for not being able to do them.  My heart really breaks for her and the unnecessary struggles that she goes through each day.

Although I feel very useless in not being able to help in times of need, I am thankful that I can usually participate in family gatherings and celebrations.  It is nice that even though we cannot be the person we once were, we can try to improve on the person we are!

(By the way, this is the good and the bad……..the ugly you will just have to find for yourself!!) 

Nothing To Write Home About

One of my cousins and I were emailing back and forth today.  When she asked how I was, I told her I was Ok but nothing to write home about.  I guess that just about sums it up.  The day is not great, but I have had much worse.  I can walk fairly well, but have to really watch my foot as it keeps not wanting to hold me up.  (Muffie: I didn’t get to its passport in time to take it away so I guess I will just have to try and keep very close tabs on it.)

I am beginning to really understand why some people get so depressed that have illnesses that keep them at home and unable to do much.  I am really getting disgusted with myself and I know that it is because I keep thinking of a million things I need to be doing and don’t have the energy to do them.  I feel very useless.

I spend quite a bit of time in the recliner watching TV.  It is a shame that there is very little on worth watching.  I am not into vulgar or irreverent programs and that seems to be most of what is on.  I am also not politically inclined to the point that I want a thousand different perspectives on the same sentence that a candidate says.  I hate to burst these analysts’ bubbles, but most of us are smart enough to figure out what someone says without them trying to tell us.

I also read a lot……mostly at night.  One reason I read so much is because I enjoy it.  Another reason is because of what I said in the above paragraph about television programs.  There is a bookstore nearby that sells books for a quarter the third weekend of every month.  My cousin and I are at their front door on those days.  Not only that, but you can turn many of them back in for a credit for another book.  It is hard to beat that deal.  I also read to try and wind myself down and make myself sleepy.  I take my night medication and hope that the reading will make me droopy enough to sleep.  Most of the time this works and I can go to sleep in a fairly short time after I go to bed. 

Except for the rare occasions that I am able to cook, do a little cleaning and grocery shop, that is the way most of my days progress.  Not very ambitious is it.

I am really looking forward to the cooler weather, leaves turning and the Holidays.  My mind is full of things to cook, craft and get together for these occasions.  My body is not cooperating and it really is getting to me.  I know, I will be better............. but the days until that time are miserable.

Eenie, Meenie, Miney, Moe

Eenie, meenie, miney, moe,
Catch a tiger by the toe.
If he hollers, let him go,

Eenie, meenie, miney, moe.
My mother told me

To pick this one.

Remember that when you were a child? I am sure there are variations to it, but it was a pretty common saying when I was young. We used to use that to pick members for our teams and such. 

I am thinking that I will make a list of the neurologists in my surrounding area and use this to pick one.  The one I have is not working out.  I carried a list of the symptoms I was having to the last visit with him.  As I have said, he basically looked at it and told me to take two aspirin and call him if I needed him.  I was NOT a happy camper with this!

We have talked about doctors before in our blogs.  I know that MS is a strange disease and has a lot of symptoms.  I know that most of us have “one from column A and two from column B” of these symptoms.  Often they change from week to week and month to month.  I realize that this makes it hard for a doctor to settle on a treatment plan for us.  What I don’t understand is that a lot of the doctors seem to not want to get involved with different treatments and wash their hands of us.  What are we to do in the meantime?

I am having some issues that I would like to at least talk with a doctor about.  Some things just cannot be relieved by resting and taking our normal medications.  I know…… I have tried this approach.

No matter how patient I try to be I just can’t sit around and hope that I will get some relief.  I need to be actively looking for some help.  I think I am on the right road with this.

The gal who is the head of my local MS chapter suggested a neuro that she likes.  She tells me he listens to what you have to say and tries to find some help for you.  Now THAT would surely be different!

I know it sounds like it, but I really am not whining……I am searching.  Like many in MSland I am unsure where the future will take me and I would like to have a conductor (neuro) I trust to drive the train.  I am hoping this guy will be the one.  Wish me luck!!

Scaredy Cat

I wrote a blog a while back on startles syndrome.  I wish I could say that I have gotten over it, but that is not the case.  I still jump at noises even when I know what they are and where they are coming from.

There is a baby monitor in my mother’s bedroom that goes to our bedroom.  We have it so that if she needs us in the night, we will be able to hear her upstairs in our room.  Unfortunately, when she happens to sneeze or cough in the night, I nearly jump out of my skin.  I know who it is and what it is, but the "startling" sensation still makes me shake and quiver.

We have a grandfather clock in the living room.  I love the look of it and the chiming of the hours.  It is another thing that often startles me.  I hear it every day, but some days it really makes me jump as it chimes.

Besides my own problems with being startled easily, I really hate that Buffy is so scared of things.  When we rescued her, she was about seven months old.  We fell in love with her immediately and welcomed her into our home with open arms.

I do not know the extent of her mistreatment, but it has left lasting effects. No matter how much love and attention we give her, if she sees someone walking down the street, a strange car going down the road or anything she is not used to seeing, she starts shaking.  No amount of loving and talking to her seems to help and she shakes uncontrollably. Her body almost gets damp as she sweats and panics. It is such a sad thing to watch.

I sympathize with her totally.  When I am startled, nothing calms me down.  I can rationalize what the noise is immediately, but it does not stop me from jumping, having a rapid heartbeat, sweating and panicking. I take nerve medication, but it does not seem to help.  From what I read that others go through with this condition, there does not seem to be any medication that helps with these attacks.  Not only that, many doctors do not recognize this as a valid condition of MS and just brush it off. 

I have been reading a lot of blogs and articles that other MS patients have written.  A trend is beginning to form in my mind.  Many of us have problems that the neuros do not consider part of MS and not even part of something real.  I find it incredible that so many of us have the same problems but they are not recognized AS problems.  There must be a way that we can put some of these things before the neurological community and get them looked into as legitimate conditions of MS.  It seems reasonable to me that if a majority of MS patients have something, it should be recognized as a symptom of MS and treated as such. Even if it is not a majority amount, if a good percentage have something, it is a symptom that should be recognized and considered valid.

OK……….off of my soapbox I come…….I guess I have things that do not fit “in the box” and would like them to be addressed by my doctor and not just brushed off……..not only for me, but for many others also.

Until they are, I guess one of the things I will have to deal with is being a scaredy cat and learn to live with it!