Wednesday, August 21, 2013

Here’s Looking At You Kid

Remember Bogart saying that in Casablanca?  It was a great line that has been repeated a million since that movie.  I’m a sucker for old movies, although some are a lot more boring than they used to be.  I guess we have been spoiled by all the things that can be done in movies these days.  Some of these remakes though, no matter how many special effects and big named stars are in them, can’t hold a candle to the original.

I often feel that there are people looking at me.  If you are handicapped in any form, you have probably felt that way also.  If not, I am sure you have seem people stare rudely at a person who is the least bit different than they are.  With young children, it can often be dismissed.  Older children, teens and adults cannot be excused for doing this.  Bad manners is bad manners and there is no excuse for them.

I have been looking at something in a store and having to lean heavily on the cart or counter in order to do so.  Many times I have “felt” someone looking at me.  I sometimes look sideways and sure enough there is.  Usually they turn away quickly and pretend they were not looking.  Once in a while there is a real jerk of a person who just keeps staring.  I sometimes just stare back at them or roll my eyes at them and go back to what I was doing.

Many people (and I am ashamed to say I have done this also) will turn all the way around to look at someone who is totally out of the norm of things.  Like someone who has clothes on that are so tight they look poured into them; someone with an outlandish hairstyle; someone who is loudly vulgar, etc.  My mother always commented on girls having odd colored streaks in their hair.  She would not listen when I tried to remind her that grandmother and most of her friends always had a blue or purple tint to their grey hair.

When I was young, children used to get smacked for staring at people, especially if they were handicapped and/or sick looking.  I remember when my son was almost three and went up to a pregnant lady and asked her why she was so fat.  I was very embarrassed by this but did not punish him since it was a legitimate question and not meant to be cruel.

With adults being almost more crude and rude than younger people, I am wondering just how quickly I would be arrested if I just walked up to one of them and slapped them.  I imagine it would be pretty quick.  The adults do seem to be much worse than the kids anymore.  I often wonder who raised them and if they were ever sorry to have not provided them with better guidance and discipline.

As I sit here typing this, I can feel eyes on me.  Glancing around I see that Buffy is standing on the arm rest of the sofa and watching my every move.  Even though she IS a spoiled brat, it is not a punishable offense.

As I look the other way, I see this:

I have eyes on me no matter which way I turn……….I guess that is a warning that I had better watch my step and behave!


Monday, August 19, 2013

Ahoy Matey!!

Lately I have been having a lot of problems with my vision being blurry.  As I have said before, often it seems like I am looking through plastic wrap.  The optometrist changed my computer glasses, but the reading ones I have just do not work for very long.  The more I try to focus, the more unfocused I seem to become.  Therefore, I really don’t read much anymore.

I have an MS friend who wears an eye patch.  He is practically blind in that eye and it hurts to be exposed to the lights and elements.  He has put several pictures of the different ones he has online.  Some are really cute.

My eyes hurt a lot.  Usually it is one eye that pounds in pain, but sometimes both of them do.  I am wondering if an eye patch might help during those times.  Maybe if the eye that hurts is cut off from its surroundings it might feel better.  Just a thought……….

Like with most things that come up, I wonder if there are things already “out there” to help with the problem.  I am presently looking at all the eye patches on the market.  Most are basic black in different shapes.  There are some really cute ones for kids.  I am not sure I have found the one that I might want in the future.

As with all things medical, I would have to discuss this in depth with my optometrist.  He is a really nice guy and does not mind trying to answer any questions I come up with.  I am sure he would get a kick out of the eye patch question.  He might even want one for himself.  It would have to be UNC blue I am sure!

I was thinking that if I do have to buy a patch one day, I could get a pirate one.  I even have a bird (Hadji) to go with it.

I was looking just now and I think I have really found the one I like.  Peacock feathers anyone??!!!



Friday, August 16, 2013

Passing It On

A few years ago there was a movement called “Pass It On”.  The concept was that if you do something for someone, no matter how small, there is a good likelihood that someone will see it and want to do something for someone else.  It is a wonderful thought and hopefully is happening all around the world at this moment.

I read some of the comments on MS sites and blogs by people with MS and other diseases.  I love it when one of them comments on trying a different drug, a different lifestyle or a different attitude.  By “passing on” information, we can all help each other with decisions we need to make about our own condition.  It is great when someone comments on something you have been thinking a lot about.

Part of the reason I began to write this blog was to “pass on” some information that those without MS or Crohn’s might not have known.  Most people who are not directly involved with either of these would have no idea what goes on in the everyday life of someone suffering with these things.  To say “some days I cannot walk” is not nearly as explanatory as an example of the same told in story/blog form.  I know that I have learned so much from other’s writings about many diseases and everyday life struggles.

I think some of the reason that people don’t write about some of the things they go through with drugs is because they don’t want to encourage or discourage others.  If a drug really improves someone’s daily walk with a disease, they may want to praise it, but fear that someone else may not have this outcome from it.  If others have great improvement with their MS symptoms with a certain drug, I would most likely want to try it.  If it did not react in me with these same results, it would be so discouraging and really put me in a slump emotionally. 

If someone had a horrible time with being put on a treatment, they would certainly not want to have a good review of it, but might be hesitant to slam it.  As I said, just because something does or doesn’t work for you does not mean it will or won’t for me.  If someone discourages the use of a treatment because it failed them it might keep someone that the treatment would help tremendously from trying it. It would be such a horrible thing for this to happen. It is a real Catch 22 situation.

Passing on information to those who do not struggle with the diseases we have has helped so many to change their ideas about people who have these diseases.  Many family members and friends really had no idea what a “day in the life of” people with diseases is like.  I hope those of us who try to tell others about this helps many who have had people treat them badly and turn away from them.  It is so sad when I hear about these stories.  Hopefully some of this will stop as more information is passed on to them.  It is the dream we all dream.........................

Thursday, August 15, 2013

Hooked On TV

The last few years or so, I became an avid reader.  I think that is true with most people who love to write.  Getting lost in the words of another is almost as good as writing your own.  I do not have a particular type of book I like to read.  I have read everything from the Harry Potter series to Agatha Christy to Biblical stories to biographies and enjoyed each one of them.

Unfortunately, over the past six months or so, I have been unable to read much.  As my eyes have gotten more blurry and weak, reading very much has been virtually impossible.  It is something I have really missed and hope that it will one day be in my realm of things I can do again.

I know for me, and most others that have a disease like MS or Crohn’s Disease, it is hard to adjust to the changes that we have to make in our everyday lives.  Many of my online MS friends have written about this and we all agree that it is a symptom that most doctors and others in our lives seem to dismiss.  Doctors cannot see it on their MRIs and other tests, so it is of no concern to them.  Most of our family and friends do not consider this a problem either because they cannot see any sign of this problem.  It is another of those things that are hidden from view, but very read to those of us suffering with it.

Most of us try to be as prepared for things that can happen as we can manage to be.  If it is getting close to winter, we have our furnaces checked out to make sure that it will keep us warm when the cold weather comes.  If it is getting close to summer, we have our a/c checked out to make sure that it will keep us cool when the hot weather comes.  We check the tires on our car to try and make sure they are safe to drive on.  We check the groceries in our home to make sure there is something to eat when we get hungry.  There are many things we can try to be prepared for.   Some things we can’t.

In a strange kind of way, I almost wish that MS and Crohn’s had attacked me when I was younger.  I know that may sound strange to most of you.  But, if you consider it, having both of these PLUS getting older hit me all at one time, it has been really hard to deal with.  I knew that as I reached a certain age my body would start to slow down and things would be a little harder to do as each year passed.  With my two diseases plus getting older, I sometimes feel that I am nearly at a stand-still.

We all have things that are hard to deal with.  I think, for the most part, I am dealing fairly well.  I know that if I get too whiny Howard will let me know!  I made him promise to because I do not want to be that way.  I also watch carefully to make sure I do not start sitting on that pity pot.  I keep the lid down and a cactus on top to keep me from not doing so.

I guess that watching TV has become my “hook” to take the place of reading.  Although I really don’t enjoy TV the way I enjoy getting engrossed in a good book, I am adjusting.  There are so decent shows and movies on and I have been able to keep myself occupied so far.  I am thinking of trying out a Kindle.  One of my friends told me that you can blow the words up and read fairly well with one.  I wonder………….sure would be great to read again………..


Wednesday, August 14, 2013


Don’t let anyone tell you that starting a new life is easy.  It is not.  It feels like Howard and I have just begun our lives together and have to begin to set up a routine that fits us.  I hardly know where to begin.

Most of the last ten years have been spent taking care of Mother.  Although five of those years I was working, the last five have been trying to make sure all her needs were met.  The hardest part was adjusting to the fact that I am no longer the person I was ten years ago and have to really struggle to take care of myself, much less trying to care for another.  I say this part was the hardest because she has yet to understand how MS works.  I know that is a common problem for those of us with MS.

There are so many aspects of my life that have changed in the last few years.  One of the scariest ones, to me, is the loss of my comprehension.  I really become agitated as I search for the words to say what I am trying to get across to others.  It is a fear I share with many of you.  Searching for the word for the picture I have in my brain is often like putting that camel through the eye of a needle that Jesus talks about!

Many people have told me not to worry because it is just a part of aging.  I appreciate their encouragement, but they have no clue as to what is going on in my brain and body.  Yes, we all age every day, but with MS is often is a quick thing rather than a gradual thing.  To suddenly go from being able to comprehend anything put in front of you, to struggling with the simplest of things is a change that is not understood by most people.  It is frustrating, frightening and no medication known can change it or stop it.  It is something we have to learn to adjust to and go on with our lives.  It is not easy.

People that are not around a person with MS on a daily basis are often shocked at the change.  The MS patient often has lost a lot of mobility, speech, comprehension and the ability to emotionally handle the things that were not a problem in past years.  Most of us have lost a lot of “friends” this way.  It really hurts when that happens.

I say all this to relay to you how I feel…………….although it is a dream come true for us to have a home to ourselves again after so long, it is really hard for me to adjust to it with all the changes MS has brought to the table after ten years.  I have the same hopes and dreams, but more and more of them are beginning to be out of my reach.

No, I don’t feel sorry for myself.  I am just trying to be honest and face the fact that some of the things I dreamed of doing when I retired have to be rethought.  Some of those things will have to be discarded and replaced with things more in my reach.  So far, I am finding that there are many things I can still do (MOST days) and enjoy.  I am learning to enjoy new things that I never really thought about before.  All in all, I am adjusting to a new life pretty well. 

But, as Ringo once sang:


Tuesday, August 13, 2013

Restarting Our Lives

I haven’t written in a while.  We have been changing the condo around a little and getting used to having the house to ourselves.  It is a weird feeling.  Having taken care of Mother for ten years, being on our own is a new concept.  It takes getting used to not to listen for her call or talk in whispers, not to tiptoe around and having the freedom to come and go as we please.

One of the things we have done is to get a new computer.  This one is an all in one with Windows 8.  I have not yet gotten used to the feel of it and how to get from here to there on it.  I had to refresh the whole system last night.  I did “something” and my screens were all messed up.  I would try really hard not to do it again if I only knew what I did to cause it.  We put the one I was using in Howard’s study.  He is trying to get used to Windows 7.  I guess we both have a lot of learning to do.

Mother’s room has been converted into a sewing room/music room.  I have not had my keyboard in a place where it could be used in quite some time.  As I have written about before, I had to stop playing piano at church because my eyes do not always focus and my hands do not always go where I am telling them to.  Now, I can just play for my own enjoyment and not have to worry about messing up things for others.  It is a nice feeling to play at my leisure with no pressure.

I am also excited to be able to sew again.  When the kids were little, I sewed most of their clothes and many of mine.  I have sewed some over the years since, but work and taking care of other things caused sewing to be put on the back burner.  I have missed it.

Howard bought a desk for his study.  He was using an old desk that was very small.  This new one is really nice and he has room for his computer, space to write notes and pay bills and space to be able to lay things out to look at that he needs to for keeping up with finances and other things.  I am excited for him and hope that he will enjoy it as much as I think he will.

I guess that we are in a stage of change.  Our entire lives are making a huge change and it takes some getting accustomed to.  We have to keep up with Mother’s appointments still, but she is not here to argue about them.  We have to travel 35 miles to see her, but it is fine with us.  We can visit friends and family and have them visit us with no interference from Mother.  It is so nice to have this freedom, but scary at the same time.  I pray we learn to use our time well and not waste it.  It has been a long time coming……….

Monday, August 12, 2013

Blank Page Blues

I have been really trying hard to resume writing, both this blog and a couple of stories/books that are running through my thoughts.  Unfortunately, both of these are doing just that…………running around in my brain but not getting organized enough to put on paper.

Several people, including my husband, have asked when I am going to post to my blog.  I have had to tell them that I had no idea when that would be.  It is really frustrating to get all geared up to write and only a blank page looks back at you.  Most people have call this writer’s block.  I call it blank brain.

I seem to have a lot of blank brain days lately.  Howard says it is because we have so much “on our plates” lately.  Getting all of Mother’s medical and financial needs in order is becoming quite a challenge.  What seemed so easy has turned out to be a lot of rearranging finances and setting up new accounts.  There is so much to do to get so little accomplished.  From working in the field of law for so many years, I should not be surprised.

Having to adjust accounts for Mother has led to having to adjust accounts for us.  If Social Security, insurance companies, etc could just help you in a speedy manner, things would not be so hard.  Instead, they drag their feet until you wonder if anything is being accomplished for all the hard work you are putting into the matter.  No wonder companies say they are so backlogged…………….they can’t manage doing today’s business for goofing around wondering what new color their carpet should be!  Sorry, just letting off a little steam…………………

I guess all these things would not seem so much if my brain was working normally.  It is not even working abnormally some days.  Most days, it is just not working at all.

An example of this:  I have gotten addicted to crocheting pocketbooks.  I plan to give them for Christmas gifts.  Each one is a little different because I am not going by a pattern and often decide to change this or that so it will not be like the last one I made.  I am coming along OK and should have enough made by the time Christmas is near to really help with our gift-giving.  The problem I have been faced with several times when I was in the crochet mood is this:  I am crocheting along and suddenly forget how to do it.  I turn my work to start the next row and have no clue how to go about doing it.  I get so angry and frustrated when this happens.  Not angry at the world, just angry at myself……..or rather the MS part of myself.

I am realizing that now that I have some extra time to spend on projects that I have not had the chance to do in quite a few years, that I may not be capable of doing them.  It often makes me run the gamut   between laughing and crying.  I cry for the loss of “myself” and laugh because it upsets me so.  After all of this, I am drained and go on to something else.

Speaking of something else, I hope I never get in that dark place I have been before and don’t remember how many “something else” things there are to do.  I am so excited about all the things there are that we can do now that we have our own time to do them.  I don’t want to be one of those people who have the whole world at their fingertips and can only see their thumbs.  What a shameful waste of life that would be.  Don’t you agree?!!