Living in Wonderland

Lately, I seem to really have a hard time remembering how to do things.  I start doing something and then forget what to do next.

For instance……the other day I was going to make coffee.  I put the filter in the holder, added the coffee grounds, then……I was not sure what to do next.  It took me a few minutes to figure out that I needed to add water to the pot.  It seems so simple, yet the next step was totally a blank to me.  For some reason, it is the simple things that really seem to throw me.  Like getting dressed in the morning….I put my underwear on, pants, top and then can’t remember what comes next…….ah, shoes and socks.

The part of my brain that holds logic is slipping away.  My speech is getting slower and slower and the words don’t flow like they should.  I know that a lot of it is getting older, but a lot of it is MS eating up my thought process.  It is beginning to really bother me and really scare me.

My husband tells me that it is not that noticeable to him, but to me, it seems like it takes days to get a sentence together. There is a short circuit in there someplace. 

I remember when it started.  I was still in the workforce. In the work I was doing, most of it was basically using the same steps to get what I needed to do done.  There were times when those steps just went out of my head.  I had just gotten through doing them and suddenly they would just go out of my head and I would sit there trying to figure out what to do next.  Here at home I can usually take my time to get my thoughts together.  At work, that was not an option.  Fortunately, I had a supervisor at the time that was attentive to my problem and would walk over and help me.  She said she could see that blank look on my face and knew that I was having a problem.  She was a very sweet, special lady and I thank God that she was patient and caring enough to help me.  Otherwise I would have been fired.

I try to play games each day that make me think.  Trivia, puzzles and word games test my thinking and hopefully help kick in the process.  Some days I do pretty well with these.  Other days I struggle.  I most with certain diseases have these same problems so I don’t feel alone with this problem.  I do, however, feel helpless to “fix it” sometimes and wish there was a way to hook-up the connection that is broken.

 Many times I make it worse by panicking.  I try to sit back, relax and realize that getting upset over this is not helping.  It is much easier said than done.  Taking deep breaths, stretching, and trying to think of other things rather than the thing I am trying to remember does help.  I just have to remember that at the time.  I also try to remember that there may be a time when whatever I am trying to remember is gone forever.  All the worrying in the world may not bring it back and if it is gone, it is gone.  Panic, worry and anxiety will not bring it back.

My mother is at the point in life where she remembers everything about life 50 years ago but often can’t remember what she did 5 minutes ago.  It does not seem to bother her.  I guess if you totally can’t remember recent things you don’t worry about it since, in your mind, it didn’t happen.  I have not gotten to that point.  I still know that thought is in there and not being able to grasp it drives me nuts.

When I think about it, not being able to remember the bad things in one’s life and the disappointments may be the way to go.  We could all live in a wonderful, peaceful world and be happy.  Peter Pan is one of my all time favorite movies.  Wonderland may be the place to go after all!

And Now Its Time To Say Goodbye…….........

When I was young, television was only on a few hours in the morning and a few in the evening.  My grandmother used to be an avid tv watcher and I would sit at her feet, enthralled with this new addition to our household.  One of the things we really enjoyed watching was The Mickey Mouse Club.

In those years, the Mousketeers would perform skits, Spin and Marty and The Hardy Boys would have a segment and usually a cartoon.  It was a great thing for my generation and one we look back on fondly.

Annette Funicello was one of the first Mousketeers that I remember.  All the little girls wanted to be like her and all the boys had a crush on her.  As she grew older, this was reinforced on both sides because of her beauty and charm.

Those of us with MS began to think of her in a different light a few years ago when she was one of the first “stars” to make known that she had this disease and what it was doing to her mind and body.  She filmed quite a few segments that showed her progression with this disease and filmed numerous spots trying to ask for money to aid in the quest for a cure.  She became even more dear to those of us who were fighting the battle with her.

I have a cousin who lives in California.  She worked in the Safeway HR office in Fremont.  In 1989, Annette was there to talk to the company officials about some commercials she planned to do for Armandino frozen foods. She brought some photos with her and autographed them for everyone.

My cousin says that she was very friendly and chatted with all of them while she signed the photos.  She recalls that Annette was very tiny and thin but had not told the public yet that she was battling MS.

She sent me a copy of the photo she received from Annette and the following comment: 

“…….I cherish the photo of her and the memories.  I would like to say that she is a hero of mine…..keep up the fight and I will pray for a cure, the sooner the better…..”

As one who grabs onto anything I can to find some good in, I find that there is nothing bad I can find about Annette.  She was, indeed, an MS hero and fought the good fight as long as she could.  Although her form of MS was aggressive and when her life ended her body had been ravaged by the disease, she never complained and always had a smile and kind word for anyone she saw.  She was a wonderful example for those of us with MS (and anyone else) and I hope to grow more like her each day and not give in to the pain and suffering. 

I pray that one day I will be in The Mickey Mouse Club in Heaven standing beside her.  Until then, when I think of her it will always bring a smile to my face and a warm spot in my heart.

Paying the Price

Since moving to our condo, I have been trying to get a life instead of just being a bystander.  I am cooking a little, cleaning a little and trying to be as normal a person as I can.  As you can guess, it is taking a toll on my body.

Although I try to do things a little at a time, it still seems to cause me a lot of pain and hardship.  I thought I was resting between chores and taking it easy.  Obviously I do not have the combination worked out yet.

I have also noticed that as I get really tired I am having some fairly new symptoms.  The less I sleep, the worse my slurring is.  Sometimes it is so bad I can’t even understand myself!  Other times I just have to talk really slow to be understand and have the time to try and form my words so others will know what I am saying.  I don’t recall having this problem much before.  It is getting to be a frequent visitor lately.

My feet are dragging more than usual also.  Since the condo has wall to wall carpet, I have to really be careful to pick my feet up and not trip.  One thing that seems to help is going barefoot.  In our old house, most of the floors were the original hardwood and had become scarred and battered over the years.  We had stopped going through the house without shoes since getting some really nasty splinters in our feet.  It is rather refreshing to get to go without shoes for a change.  I hate that part of the reason is to try and help not fall.

Did I mention my back kills me when I stand very long?  I guess it is from constantly trying to balance as I cook and clean.  Several friends have mentioned having this problem.  I tried wearing a back brace some but it did not seem to help.  We try to keep an ample supply of pain cream on hand for these times.  I have gotten used to smelling like a medicine cabinet.  My legs are also hurting a lot more and have to be rubbed down each night with the “smelly stuff” for me to be able to be still enough to rest or sleep. 

Many MS sites are filled with menu and exercise suggestions.  Between the Crohn’s and MS food restrictions, I have decided to just eat what my stomach will handle and not worry about the rest.  If I stuck with a combination of the two, I would not be eating anything anyway….or at least not eating anything worth eating!  For most of us with MS, much in the way of exercise is taboo.  When I was taking physical therapy, it would take me days to get over a session and did not seem worth it.  Some MSers have wonderful workout sessions and I am so happy for them.  Most of us are not that fortunate.  As with many other things, it is not worth the price I pay to try and do it.

I remember when I was getting toward my late 40’s-early 50’s. I could hardly wait to get to retirement age and not have to go to work. When retired, I would be able to have a little more freedom with what my day would be like.  As with many other things in life, you have to watch what you wish for.  More times than not, it does not turn out the way you thought it would.

I am trying to learn to make better use of my time and get things done without hurting myself so much.  I am thinking that if I have to pay the price, I wish it could at least be as admission into Disney World!!

 

I WON!!!!

I am soooooooooooooo excited!  After two years of haggling and waiting, I have been approved for disability!  Howard was so sure I would get it but I was very skeptical.  I am so glad he was right!

It is not a big raise in my monthly check, but I am so thrilled to start Medicare.  The private policy that I have had to take out costs a lot a month and has a $5,000.00 deductible.  I refused to get some tests and treatments the doctors wanted me to have because of this.  Now, I hope to be able to try out some things and hopefully get some relief.

Unfortunately, it is not as easy as it sounds to get all this started.  My Medicare started in July.  In addition to that, I need a prescription drug policy and a supplement for the part Medicare does not cover.  Do you realize how many insurance companies there are?  At last count, I figure around a gazillion or so.

I was always told that anything worth having is worth the trouble it takes to get it.  I hope that is true.  I have cauliflower ear from talking on the phone and trying to get someone to understand what I am looking for.  Many of the agents I reach tell me it is easier to go online and fill out what I need.  It may be easy for them, but I have found that my brain is having a hard time figuring out what they are asking for or telling me.  I did not go to insurance school and do not understand many of their terms.  I am not so sure they do either.  From reading some of the things, I think a lot of it is gibberish written just to confuse us so we will give up and let them handle it. 

I think that even a year ago I could have handled this better.  My brain was not quite so garbled and things made more sense.  Now, I can read something several times and still not get what they are trying to tell me.  It is so terribly frustrating.

Howard is getting pretty deaf.  He always wants me to talk on the phone because he spends more of the time saying “what?” and the other person often gets a little flustered and irritated.  Most of the time, I am OK with this.  Sometimes though, my speech is hard to understand and my brain will not put words in an order that makes sense to me.  I hear words, but often I don’t hear them as parts of a sentence or idea.  My “huh?” is becoming as prevalent as his!

I have a good friend who has a lot of problems with her speech.  She tends to apologize for this.  She is such a sweet, bubbly person that I kind of get angry with her for apologizing for something she has no control over.  Until my speech began to start getting pretty noticeable, I did not understand this.  Now, I do.  Unfortunately, the more I try to explain my problem, the more agitated I get and the harder it is to get out of my mouth.

Although I was thrilled to get the disability ruling, it is also sad.  I guess when you see it written down in black and white it becomes a reality you can’t ignore.  I am so thankful to the Good Lord above that I go approved, but I really wish I did not have the problems it took to get the approval.  Know what I mean?

Anyway, here is a little bit of CUTE to take our minds off of our disabilities and problems.  When Buffy went for her last grooming, it was around St. Patrick's day and the groomer put bowties on all her clients.  Isn't she cute?!

 

 

Face From The Past

Like many with an ongoing illness, I am more of a hermit than a go-getter out roaming and wandering.  I have a few people that I see and talk to on a regular basis, but I have not talked to many people I have known over the years in a very long time.

When I worked, I hung around with a group and we did things together.  We were close and shared many things together.  We tried to help each other with problems, shared sorrows and rejoiced in each other’s happiness.  I have not seen most of them since I left work in 2008.  Most of them have no idea how I am doing, what I am doing, or probably if I am still alive.  Funny how we can be so close to people for years, but not stay in touch with each other when circumstances change and we are not around each other.

It really bothered me when I first had to quit working that people didn’t call or visit.  But, after talking with others who had gone through the same thing, I realized it was not an uncommon thing to happen.  Many others had gone through this and told me to try and get over it and know that I am not alone.

One lady that I hung around with a lot was named Betsy.  She was a rather high-strung woman but a very devoted and loyal friend.  She would get nervous over simple things and often worried about things to the point of making herself sick.  We always took breaks and lunch together and would try to help each other with problems one of us were having.  I really cared a lot for her and missed her when I left work.  We talked a couple of times on the phone, emailed a little, but eventually our communications stopped.  I missed her a lot.

Betsy was the type that could not face problems with people and often brushed them aside so as not to worry about them.  When I first started going to the doctor and was diagnosed with MS, she “poo-pooed” this idea and told me I did not have anything so terrible as that.  She said the doctors just liked putting big titles on things and trying to get more money by running tests and such.  I knew she was wrong about this, but I also knew that it was her way of dealing with it.  I guess I had decided to face my problems head on and do the best I could with them.  We never talked about and stayed away from any conversation veering in that direction.

She has crossed my mind many times over these years, but I was not going to contact her.  I know that she loves me.  I also know that it would be hard for her to accept me as I am now.  I did not want to have her see me with the handicaps I now have.  This was not to be.

Howard and I went to the grocery store a few days ago.  I don’t take my cane to the store since I have him and the cart to hold onto.  I do not like to draw attention to myself any more than is necessary.

As we walked to the counter to check out, I turned around and was face to face with Betsy.  She looked very stunned.  We hugged each other, but she seemed so shocked and didn’t seem to know what to say.  She asked a little about me, got my telephone number and said we should have lunch one day soon.  I agreed.

I really don’t think I will hear from her.  The look on her face nearly made me cry.  She did not want to face the fact that my MS diagnosis was true and had “done a number” on me.  I don’t think she could deal with the reality of being around me.  She did not understand the slurring when I talk or the fact that I could not get from one place to the next without holding onto something.  I really think it shocked her terribly.

I guess it is a shock to someone who does not go through the process with us one day at a time.  To suddenly see the deterioration a disease can cause to a person is a shock I guess.  It is also something that most people would not want to deal with and so they don’t pursue the friendship.  I hate it, but I will be very surprised if I ever hear from her.

I read things people say on many sites.  So many people want a relationship and feel that no one will ever love them and want to marry them.  Others have lost many friends through their illness and just wish they had someone to share things with.  My heart goes out to them and I wish I could “fix it” for them.

All of us have gone through one or more of these things.  Often we have gone through this several times.  It does not get any easier with each episode of rejection.  Hopefully, we will always keep trying and find those people who will love and accept us as we are.

Moving From There To Here

As I was saying in my last post, moving was not all fun and games.  I am sure most of you have moved at some time or the other and know that the excitement of moving to a new home is sometimes outweighed by the hard work involved in the process.

Our house was an old, two-story home with a fenced in yard.  We had three buildings in the backyard and my husband had a pretty good sized shop.  All the buildings were full.  There were boxes of stored clothes, papers, pictures and such.  There was quite a few pieces of furniture that was no longer being used.   One building housed the lawnmower, weed eater and other such machinery.  Another building housed hoes, rakes and other gardening tools.  One building held wood for the woodstoves.  Howard’s shop was full of power tools and such.  Very little of these things could come with us in the move.  We would no longer have a yard to keep up or a place to store a lot of things “in case” we might want them.  We could, of course, have rented a storage unit, but that seemed like an unneeded expense to house things that had not been needed for many years.  We sold a lot of the things, gave some to family and had to trash things that had dry rotten.  It was, to say the least, a big job in itself.

The house was a whole different matter.  Mother wanted to take everything she had in drawers, boxes, storage containers and closets.  It was a chore to pack things without her knowledge of things we had to get rid of.  She has not let us forget it!

Howard and I also had sacrifices to make.  I am a book nut.  I had to go through all my books and only bring the ones that meant the most to me.  Howard had to sell all the tools that took him years to acquire.  We sorted through clothes, books, tools and other items and finally got down to the bare nubs of things to bring.  I shed a few tears over some of it, but, in actuality, have not missed them since we moved.  I may reminisce over some in years to come, but probably will never really need any of it.

We were fortunate to have a couple of his brothers and a sister-in-law to help us with the packing and moving and cleaning and all the things involved in moving.  Without them it would not have gotten done as soon as it did if at all.

We put all the things in one area that we were not bringing with us and had the kids come over and get what they wanted.  It actually surprised me at the things they wanted.  By the time they were through, most of it was gone.  I was glad someone was going to have some of the things and would appreciate the sentiment of them.

When I was a child, I remember seeing movies where staircases were decorated for Christmas.  It was always my dream to have a house to do this with.  I have shared pictures of Christmases past where I did this and it was so much fun.  As I have gotten older and my MS and Crohn’s has taken their toll on my body, it had gotten to be a chore rather than a pleasure to do this each year.  I could not go up and down the stairs by myself, clean much, cook much or really enjoy a big old house.  I guess part of my tears have been for the end of a part of my dreams and trying to come to grips with reality.  It is a thing we all must do, but that does not mean it is easy.

This condo does have so many good points.  I can walk all over the home without having to call my husband to take me.  I have access to everything and can cook, clean and relax when I have the opportunity to do so.  Instead of being pretty much restricted to one area of my home, I have a whole home to roam around in.  It is such a pleasure for me to get up in the morning and fix my own coffee.  The simple things in life are very precious in this time of my life.  Like most of you, “normal” is more often than not a part of our day.  I am trying to learn to appreciate the small things and not worry about the things I can no longer do.  There are a lot of “flowers” to smell and things to enjoy in each day and I have decided that it is my life’s purpose to find them!

A few pictures of our new home!

 

AWOL

Yep….that’s me.  I hope you all are doing fine and things going as well as possible for you.  We have had a busy year so far.   A lot has happened…..some good, some not so good.

I have not been blogging since Christmas.  We had a wonderful Christmas and hope that you did.  As usual we got some great gifts and had quality time with our family.  That is, by far, the greatest gift I could have.

My youngest daughter (Robin) and son-in-law (Brett) are artists.  Brett painted my husband a picture for Christmas.  They are both avid Green Bay Packer fans, so the picture reflects this.

Robin and Brett have a page on Facebook with some of their artwork on it.  I hope you will take a moment to look at it.  https://www.facebook.com/pages/The-Art-of-Brett-and-Robin-Byerly/443273445740423?fref=ts .  Yes, I am proud of them!

After Christmas, I began to have a small relapse.  Nothing too bad, but enough to put my brain in more of a fog than usual and make writing impossible.  The girls took me out for my birthday in January, but my swallowing and walking was getting rather iffy and it was hard to enjoy being out and about.  Being with them is always special, but I sometimes feel like I am stealing part of their joy by having to help look after me.  I took some pictures of our little group that day, but they obviously went on vacation with my brain.  I cannot find them.  They could at least send a postcard and let me know they are Ok don’t you think?!

By the end of January, my husband and I had come to the conclusion that we had to move.  I have mentioned before how hard the stairs were becoming to maneuver, but it was getting to the impossible stage.  My mother was developing a pretty bad case of shingles and things were getting rather hectic.  Howard and I decided that his having to take care of me, mother, the house, the yard and himself was just too much.  We began hunting for a new place to live.

It was fun looking for a new home.  There are so many options to choose from.  We narrowed it down to a condo, since we wanted to downsize and not have a yard to take care of.  We looked at a couple and found one we liked.  We took mother to see it and all of us agreed that this was the way to go.  Unfortunately, things are never as easy as we hope they will be.

We bought the condo.  That was no problem.  The problems started when we all had to decide what to take and what to give away, sell or toss in the garbage.  Mother had lived in that house since 1974, so there was a lot of stuff (junk?) that just had to be gotten rid of.  Even though most of the time she was bedridden with the shingles, she could not understand why all her things were not going to the new home with us.  It eventually became a very big problem.  All of us had to give up things that we would have liked to have kept, but moving from a 10-room house to a 6-room condo took a lot of sacrifices from each of us.  We had quite a few squabbles over this and she still tries to have a fit sometimes.  We have put our foot down several times with her and tried to keep peace.

Peace…….what a wonderful sounding word…….

I have some things on my mind and hope to get back in the groove of writing and sharing with all of you.  I have missed you……you are a big part of my family!