…........……….and a tee shirt to match

Our niece had a baby about six months ago.  She is a beautiful little girl and greatly loved.  Everyone in the family, plus many friends, has given her clothes, toys and miscellaneous items that are needed with a small child.  One of the things associated with babies that I have really been looking at lately is walkers.

Most baby walkers are round with four wheels on the bottom.  There is a canvas seat/holder in the middle that the baby’s legs fit in and hold the child up.  The baby’s feet can walk on the floor but the walker will not capsize under normal circumstances.  I was wondering if something like this could be made for adults.

Most of the time when I am out of the house, I have my cane in one hand and hold my husband’s hand with the other.  This makes me feel very safe and I do not fear falling.  I know that my husband will hold me up if I begin to fall.  The cane I am not so confident with.

When I broke my leg I was still in the workforce.  I had to use my walker while my leg was healing to help me get from here to there until it healed.  It was very sturdy and I felt pretty safe using it to walk.  But, if I had begun to fall sideways, I fear I would have toppled over. This is what made me start thinking about the baby walker. 

My design would be more of a square so as to not take up as much room.  There would be a canvas seat/holder in the middle and allow the person to stand up much as the baby walker.  It would also be sturdy enough that the person could put all their weight in the seat and rest. It would have four rollers that go in all directions.  There would be a brake on the front top bar.  Some could have a small storage area much like some adult walkers have now.  The walker would have the body close to the ground where the wheels attach.  That way it would be more sturdy and harder to topple.  The perfect fit would make the top of the walker fit around breast level and be adjustable for wherever it is the most comfortable for the user.

I have thought about this a lot.  The adult walkers we have now are not sturdy.  If a person starts falling sideways, backwards or forwards, it will fall with them.  If they become tired during their journey with the walker, they have to find a place to stop and rest.  I know that they are great for some, but for those of use that get tired and nearly fall easily, they really are not that great.  I know that some have seats.  To sit on these seats, one has to turn around and sit down.  When your legs are not working properly and very unsteady, turning around is not always an option.

I would love to find a company that makes things that are designed by the people who use them.  Most of these kinds of things are designed by healthcare providers.  For the most part they do a really good job.  Sometimes though, since they will not have to depend on these things like we do, they don’t quite have what we need on them.  I have found this true with clothes, dishes and other everyday items.  Even when I do find something that I think would really help me, it is so expensive that I can’t imagine spending that kind of money for.  Most things that are designed for a specific group of people are always priced out of reach of most in that group.  It has always seemed ironic to me………..

I was daydreaming about that walker one day and went even further with the dream.  The canvas seat could come in different types of print or solid color.  There could be shirts to match……..hats to match……..shoes to match……the list could go on and on…………we could have our own line of clothing to match accessories we use………sounds like a plan to me!

 

Rise And Shine

I used to hate the sound of the alarm clock.  Back when I used one it always meant it was time to get up and get ready for work.  I liked the work I was doing, it was just the getting up and getting ready to go that I dreaded.

Saturday was a good day because I could sleep a little longer and not be so rushed.  Sunday was good because I could sleep a little later and the go to worship.  Other people who were in the workforce seemed to agree with that sentiment.

Now that I am out of the workforce, I miss that routine………not that I could keep up anymore, but it always gave me a purpose each day.  Most days now I get up when I am ready, unless there are doctor appointments that day.  When I need to rest, I don’t have to keep pushing until I can get off work, I just lie down and rest. 

When I was working, I had a responsibility to get certain things done in a given time frame.  I had to be dressed, clean and ready to put myself in the mode to do my job.  No matter how much we may like or dislike our job, it really does give us a sense of accomplishment and reason to get up in the morning.

I have had a series of bad days so I guess I have the blues.  It is not an unusual thing, but one I really dislike having.  For the most part, I am an upbeat, happy person.  No matter how bad things seem at the time, I know that there are countless others who are having it so much worse than I am.  That does not mean that I don’t have “pity poor me” spells at times.

When I got up this morning, I did my usual thing of going to the kitchen and getting a cup of coffee.  Usually, by the time I finish my first cup, I am getting more awake and thinking about what I hope to get done that day.  This morning I did not get to that point.  I could not shake the feeling that if I kept trying to walk and move around I was going to fall.  Even after I took a short nap, the feeling did not go away.  I think most would call it the droopies.

I guess these type of days make me sad because, even on my good days, it is hard to do the things I want to and my “to do” list just gets longer and longer.  We all want to feel useful and able to take care of the things that need done.  Some days that feeling just is not there.

Since I do not seem to be gathering any energy this day, maybe I will just go lie down again………..and think about the things that need doing……..pretend I am up and doing them…….and trying not to snore loud enough to bother anyone!

Where is Matt When You Need Him?

As people have gotten on the internet and made friends with those whom they have things in common, the MS group has come to call itself an army fighting the dragon.  It makes sense to me and to most others fighting this disease.

One of the main problems I have with MS is trying to gear myself up for what it will throw at me on any given day.  There are the normal problems we have each day, but some days have extras thrown in.  I guess in all reality, no one knows what tomorrow may bring.

I was watching a TV movie the other night that was supposed to be about things that would happen in the future.  Like with most movies of that kind, the people became corrupt and there were wars and scandals and such.  Kind of looked like our time except with more sophisticated stuff!

One of the things that kind of fascinated me was the fact that people could put their hand against a screen and the machine would tell them what kind of day they would have.  It even had options to tell a week or month of what a person’s life would be like.  I really don’t think I would like that.

There is a lot of money each day spent on palm readers and other types of fortunetellers.  Everyone seems to want to know what is in their future.  But do they really?  What if something terrible is going to happen to you in five years.  Do you really want to spend the next four dreading the fifth year and not being able to enjoy the four?  If there is nothing you can do about it, why know?

I think I am better off not knowing what MS has in store for me tomorrow.  This way I can enjoy what I can do today without worrying about it.  I can have my hopes and dreams and be as happy as possible.  I will not spend my time being anxious because I think something bad is going to happen.  Sometimes, not knowing is the best medicine.

Most of us belong to a group of people who have our best interests in mind and help us fight whatever battles life throws at us.  We have our own little armies that encourage us and stand up for us anytime we need them.  I certainly do and know you do also.

My husband loves westerns.  Gunsmoke is something that he watches every day, even though he has seen most of them a few dozen times.  It is kind of like Andy Griffith….. you just have to watch when it is on.

I like Matt Dillon. Although he often has to kill someone, it always seems that it is something he would rather not have to do.  He is kind, helpful and ready to fight for the underdog.  Wouldn’t it be nice if he were here to fight for us!!!

Is It Unusual……….. Or Something To Be Ignored?

According to the Health Central website:  “Damage to the sensory nerves between the brain and one or both eyes can lead to severe eye pain in people with MS. This pain, known as optic neuritis, may get better or worse over the course of the progression of MS, and it is often of the first symptoms people with MS experience. People who experience any pain in their eyes should have this problem checked out immediately by a health care provider.”

I have severe pain in one of my eyes.  Sometimes it is so sharp that it almost takes my breath away.  So far, my neurologist has decided that this must be related to something else because it is not an MS symptom.  Really?!

On the Health Central website there is a section about MS and many of the problems patients with MS deal with as well as some of the problems that are considered not so common with MS.  I would love to have this made into a booklet and passed out to all neurologists.  Out of the five neurologists that I have been to, all but one dismissed anything that was “out of the norm”.  Unfortunately, he was one of the ones that I have been to that moved too far away to continue seeing.

From everything I have read, as well as talking with so many that have MS, I really can’t see how anything can be considered normal.  Most of us that suffer with MS have a variety of symptoms that come and go.  I would not really consider any part of this disease normal!

One of the biggest problems I have had with doctors seems to fall into the category of them not having enough experience to realize that everything anyone has is not necessarily just like the book states it should be.  For instance:  What would you list as the symptoms of a cold?  For some, it is sneezing, sniffling and coughing.  For others, it is a low grade fever, chills and coughing.  Because all cold sufferers do not fit into the same category symptom-wise, there are many different types of medicine.  One brand of medicine I have looked at when I had a cold had many different symptom relievers.  One loosened mucus, one relieved chest congestion, one was for fever, one for cough and so on. If you had several of these symptoms I guess you would have had to use several bottles for each problem.

I guess, like a lot of you, I get really disgusted when my doctor ignores things I tell him because he feels they are not related to his field of expertise.  I feel like many that most of the problems I have each day are related to my battle with MS.  I realize the difference in having a cold, breaking my leg (which can be related to MS) and stubbing my toe (ditto) and problems with MS.  Sometimes, though, they all seem to run together.

Since my eyes are getting progressively worse, I have decided to go visit my opthamologist.  He is a nice guy and I trust his judgment.  He listens to me and tries to decide what he feels will be the best treatment option.  The only problem I have with him is his taste in sports……….he picks lousy teams!

The Straw That Broke……...........…………….

From Wikipedia: The idiom the straw that broke the camel's back is from an Arabic proverb about how a camel is loaded beyond its capacity to move or stand. This is a reference to any process by which cataclysmic failure (a broken back) is achieved by a seemingly inconsequential addition, a single straw. This also gives rise to the phrase "the last/final straw", used when something is deemed to be the last in a line of unacceptable occurrences. Variations include "the straw that broke the donkey's back", the "melon that broke the monkey's back", the "feather that broke the camel's back", and the "straw that broke the horse's back".

One of the earliest published usages of this phrase was in Charles Dickens's Dombey and Son (1848), where he says "As the last straw breaks the laden camel's back", meaning that there is a limit to everyone's endurance, or everyone has his breaking point. Dickens was writing in the nineteenth century and he may have received his inspiration from an earlier proverb, recorded by Thomas Fuller in his Gnomologia: Adagies and Proverbs as "'Tis the last feather that breaks the horse's back".

Another way of saying this comes from The Free Dictionary: “the straw that breaks the camel's back: the last in a series of unpleasant events which finally makes you feel that you cannot continue to accept a bad situation Losing my job was bad enough but having the relationship end like that was the straw that broke the camel's back.”

 

I felt this way today.  Every day those of us with MS struggle with the different problems it presents us with.  Lately, I have been on an uneven keel.  I try to walk straight but end up bouncing off the walls and any piece of furniture that is in my path.  I try to talk normally, but my words are slow and hard to form.  I try to answer questions that people ask me, but my brain seems to be in first gear and won’t change to second.  There are numerous other little things to deal with but I go along and try to function………….until today.

 

Last night I was sitting in bed watching television.  Buffy was on a pillow at my feet and we were relaxed and fairly comfortable.  I think I have mentioned before that lately my mouth does not seem to fit my face.  I was flexing my jaw and running my tongue around in my mouth when one of my teeth came out.  Not one of my two front teeth, but one next to them. It did not hurt and there did not seem to be anything wrong with it.  I think that became my straw. I cried and cried and had a hard time getting control of myself.  It is not that I see a lot of people who would be embarrassed by my lack of a tooth.  It is that it is one more thing that has to be taken care of.  It just seemed to over load my brain and cause a breakdown. 

My husband was all business about it.  Call the dentist in the morning and have it fixed or at least start the process to having it fixed.  No big deal to him, just fix it.  I guess one of us has to have a level head.  I am glad he does.  It did not make me feel any less of a burden, though.  He always disagrees with this description of me, but it is the way I feel most of the time.

 

OK.  I have whined enough.  I know that each of us, no matter what impairment we have, have a breaking point.  Sometimes we just have to give in to it and let the tears flow and the anger and frustration out.  Keeping it bottled up inside does not do us or anyone around us any good.  My emotions are out and I hope the tears are gone.  Now I just have to work up the courage to go to the dentist.  Have I mentioned how much I am afraid of dentists?!

 

If It Ain’t Broke……........

I used to love to tinker with things when I was young.  Once, I took a clock apart just to see how it worked.  I could not get it back together, but it sure was fun taking it apart.  When my grandma saw what I was doing, she smiled, shook her head and told me, “if it ain’t broke, don’t fix it.”  I have thought about that a lot lately.

My mother has had shingles since January.  She has gone through quite the struggle with them.  As I have had them myself, I know that the pain is terrible and seems to never want to go away. 

What I don’t understand is that the doctors keep changing her medication.  Maybe they don’t want to get her addicted to something.  She is 84 years old.  When she takes the medication she does not hurt as much.  What is so bad about keeping her on something that works!

I have never understood the concept that doctors have about addition in old age.  If you only have x amount of years to live and a medication is making life more comfortable for you, what can it hurt to take it?  The drugs are legal and they are prescribed by a licensed physician, so why do they get so upset about it.  If something is helping, leave it alone.

I feel the same way about MS drugs and drugs to treat different problems associated with MS.  As of today, there is no cure for MS.  If we live 30 more years, we will have MS 30 more years.  I cannot see where it is so bad to be given a habit forming drug when it makes life tolerable for a person that will, in all probability, not get any better. 

I know the dangers of drug addiction.  I have seen it give so many people problems.  The drugs normally associated with these types of behavior are usually not the drugs someone with a life-long illness takes.  Most of us do not take drugs to get high.  We take drugs to get some relief from pain.  To me, there is a VAST difference in that.

I think I am worked up about this because of two instances I know about that have happened recently.  My Mother’s psychiatrist took her off of 3 medications (2 for pain; 1 for sleep) and replaced them with 1 different medication.  Although her speech is not as slurred now and she seems more even-tempered, she is not sleeping well and has a lot more pain.  As I stated above, what is this change supposed to be accomplishing?

The second case that upset me was one of an online MS friend.  She has severe pain and been on pain medication for years.  She is 60 years old and confined to a wheelchair.  Her neurologist has moved out of the country and she had to start over with a new one who took his place.  This neuro is young and just getting started in his practice.  He was appalled, according to her, at the medication she was taking and immediately took her off of some of them.  She has spent many of the last few days in the hospital for treatment of her pain.  In both of these cases I don’t see the necessity for the change.  If something is working, why change it.  I am sure that you can think of a lot of cases this fits.  I can understand fixing a broken leg, but this is ridiculous!

When You Wish…………...........

I realized when I was saying my prayers yesterday that I seemed to have a lot of “I wish” in them.  I always pray for my husband and all of our family and friends, including my online friends that I love so much.  There just seems to be a lot of wishing involved anymore.  (I say wish/pray, they are each referring to the same desire)

For example:  I always pray that there will soon be a cure for all our diseases and if not, that we will each find something to help relieve our pain.  I pray that the loneliness that some feel will be relived and they will find love and happiness.  I pray that those who seem so angry about their condition will find peace and be able to deal with life in a more positive way.  I pray that all of us will find the strength to help someone who is reaching out to us for compassion and guidance.  This list is very long, so I will stop here with that one.

Another list I always have a lot on is praying for our leaders and for anyone who makes decisions that will affect all of us.  This list is long also. 

I also try to remember to pray for all those in harm’s way, whether it involves being in a war situation or a weather situation.  There are so very many who are placed in unspeakable horror every day and I try to remember them.

These are just a few examples of some of the things on my list I pray for all the time.  I know you have many on yours also.  There are so many needs that sometimes I feel like all I do is to ask God for something.  I hope that I also remember to thank Him for all I have .

Sometimes it is hard for me to put into words what I wish.  Of course I would like to be “normal”, but I also want to enjoy the things I can still do and not grumble all the time.  I really work at not constantly saying “this hurts”, “I can’t do that”, “this is not working”, etc.  Those who are around me do not want to hear that all the time and  neither do I!

I was reading a post on a site the other day from a girl with Parkinson’s.  She was trying to explain something she was feeling but could not find the words to tell it.  It was a fairly long post, but the gist of it was that she was trying to get help with something she could not explain.  Most of us with ongoing illnesses know that feeling well.  Sometimes my husband will ask me what is wrong and I don’t know how to explain it to him.  It is hard to wish for something that you can’t put into words.

Most of us with MS have a variety of things that plague us from time to time.  The medical community loves to put multiple-lettered words together to tell us what it is we are experiencing.  Few of us can repeat it or know anyone who would know what it was if we could.  If I tell you my face feels like there is a knife raking down the side of it, you will know what I am talking about.  If I use some fancy big medical term, you probably will not.

I guess what I am trying to say is that I do not want to live my life in wishes.  I am able to do some things and be a part of the world.  When we constantly wish things were different, we lose sight of all the wonderful things we have now. 

While I am in the list mood, I think I will start on my list to Santa.  He is so very busy during the months most people send him lists that maybe if I send him one now he will not have to rush to get the things together.  Now………..if I just knew where to start……….