The Heat Is ON!!!

Dear Mr. Weatherman:

Enough is enough already!!  It is TOO HOT!!! 

I am voicing this complaint for all of us who cannot deal with this type of weather.  Not only is it uncomfortable, it hurts!  My legs, arms and hands are buzzing like crazy.  My face feels like it is on fire even in front of the a/c.  My back is aching and burning. 

My main complaint is the fatigue, which gets much worse in hot weather…………and this weather is not just hot, it is ridiculously hot.  I am protesting!!  I can hardly drag one foot in front of the other and when I sit down it is all I can do to get up.

I would like to point something else out also.  Researchers from the Kessler Foundation, with funding from the National MS Society and the National Institutes of Health, conducted a study comparing cognitive functioning in different temperature conditions in 40 people with MS and 40 people without MS. The data showed that people with MS scored 70 percent worse on tests of memory and processing speed during hot days, while people without MS scored the same during hot and cool days.  Are you listening???

Ah for the cool days of Fall………..or the cold days of Winter…..I dream of these days……being able to walk outside a while; being able to plan on going out without rushing to the car out of the heat; being able to think about going on a short trip and do some shopping; being able to THINK PERIOD!!!

Just wanted you to know how I feel.  Otherwise, I appreciate all the work you do and the great job you do with the forecast.  But, I would appreciate your changing the forecast to a much lower temperature in the very near future.

Thank you.

 

The Lesser Of Two Evils

My back is really hurting lately.  It either is streaking with pains or on fire.  Neither is good and I would hate to have to choose which one to be stuck with.

A while back the doctor prescribed Cymbalta for me to try and help with the pain.  As I wrote in an earlier blog, it put me in a fog all day and I just did not want to live my life that way.  Unfortunately, now that it has gotten out of my system, the pain has returned full blast.

I try not to be a whiner, but my husband says he can see in my face when I am hurting.  I don’t know how to hide this.  I hate for him to worry about me and feel that he has to do everything, which he basically does anyway.  I know many of you have this problem also.

I see so many sad, pitiful people in the rest home when visiting my aunt.  Many of them have no one who cares about them.  Many have outlived their family and friends so there is no one to come visit them.  They sit in their rooms or out on the porch and daydream.  Daydreams are nice for the most part, but not when that is all you have.

There are times that I wonder if pain is all that we have to look forward to………..if our lives will be like those poor souls who have nothing happy in their lives and have that forlorn look on their faces every day.  That is one of the reasons I write this blog.  If no one read it but me and my husband, it is good therapy for me and my husband says that I say things in it that help him better understand the things I go through each day. 

I try to explain things in a way that someone who does not have MS can get a better understanding of what we feel each day and the struggles we have.  I know that my husband is loving and understanding, but there is no way that he can feel what I am feeling and know exactly what I go through to make it through each day.

I also try to get those inner little “pity me” feelings out of the way and this blog is a good therapy for me.  I can moan and complain, but I really like to try and have some humor in it and end with an upbeat attitude.  I hope this is how it comes out to anyone who reads it.

Maybe it is just one of those blue days………..I am having a hard time trying to find something good to say…….some days are just that way……….I do feel that the pain is better than being “stoned” all the time………I always thought of myself as a hippy child……most hippy children liked being stoned………maybe I’m not as much hippy as I originally thought??!!!

To Laugh or To Cry ............ That Is The Question!

June 26
Do you ever wake up and you are crying?  I have, quite a few times.  I have not had a bad dream and nothing is more wrong than normal, I am just crying. It is very unnerving, especially when you can’t make heads or tails of a reason.

Some people say they have bouts of laughing.  For no apparent reason, they just burst out laughing and cannot stop.  They say it is very embarrassing and I can imagine that it would be.  I have not done that yet and hope I don’t.

These types of outbursts, laughing or crying, is called pseudobulbar effect.  According to Psychology Today, “people with PBA are subject to uncontrollable episodes of crying or laughing without an evident reason. While the exact causes of the disorder are not fully understood, it appears to be associated with injuries to neurological pathways in the brain that control emotional response. Diseases like ALS, MS, Alzheimer's, Parkinson's, and brain trauma resulting from stroke are all linked to PBA, and according to the latest research, approximately 50 percent of patients suffering from those diseases also suffer from PBA. In some cases, a patient with PBA has an underlying brain injury he or she wasn't even aware of. Dr. Jonathan Fellus, a neurologist and expert on PBA, says that one of the reasons why PBA is misunderstood is that it's so often mistaken for depression. "Well-meaning medical professionals misinterpret symptoms and tell patients they are depressed and just don't know it. They then prescribe an antidepressant, which in most cases won't work and the patient continues to suffer. To determine if a patient is suffering from depression or PBA (or possibly both), Dr. Fellus has developed a screening method that focuses in on what triggers the emotional response. During the course of a calm discussion with the patient, he narrows down the topics--perhaps having to do with family members or situations at work--and eventually he and the patient come across one that elicits unexpected crying or laughing. Once triggered, the response is uncontrollable and ends quickly.  One of the main things that distinguish PBA from depression is that the emotional episodes are unpredictable and very short, ranging from seconds to minutes, and they occur multiple times a day. They require a great deal of energy to hold back. The side-effects for PBA sufferers include feelings of emotional exhaustion and, frequently, social isolation. Without realizing that they have a medical problem, people with PBA often adapt their lives to avoid things that trigger the response, including interacting with others unless they absolutely have to. With social isolation comes more negative emotion that can over time manifest as depression. While all of this may sound like new knowledge about a recently discovered disease, PBA has actually been well-documented in the medical literature for more than 100 years, though it has been labeled at least ten different things during that time. One of the earliest terms for the condition was "reflex crying" (a term now associated with babies' sudden, uncontrollable bouts of crying). Even Charles Darwin described the disorder in his seminal text, The Expression of the Emotions in Man and Animals, 130 years ago. Until recently, however, PBA patients suffered without hope of treatment. About 15 years ago, a medication being tested to treat ALS patients was found to stop the episodes of laughing or crying these patients regularly experienced. As it turned out, the treatment was not approved to treat ALS but was subsequently approved to treat PBA and became available in January of this year. Interestingly, the active ingredient in the medication (called Nuedexta, made by AVANIR Pharmaceuticals) is dextromethorphan--the same drug found in many brands of cough syrup. (You cannot, however, self treat PBA by taking cough syrup; the formulation in Nuedexta is significantly different than anything available over the counter.) The ability to treat PBA can change lives, and it's crucial that more medical professionals get the facts about the disorder and its treatment. According to Dr. Fellus, "Doctors don't screen for PBA because they don't know about it, and patients don't tell their doctors about their symptoms because they don't recognize them as symptoms." That has to change, and when it does thousands of people who would otherwise suffer in silence will benefit.”

Most people with MS have such a wide range of symptoms.  Although we share a lot of the symptoms, some have never heard of other symptoms someone may be having a terrible time adjusting to.  One of the really good things about our MS Family is that we are all sympathetic with each other and try to help each other whether we have experienced that particular problem or not.  Sometimes, we are the only sympathetic ear that someone has.

As with most things involving MS, you have to think in the “box of chocolate” realm.  Not only do you never know what you are going to get, you never know how long it will last and if it will come back when it stops.

I keep a box of Kleenex on my bedside table.  When I wake up crying, I just wipe my eyes, blow my nose and try to go back to sleep.

Topless or Bottomless??

June 25
When I was young, I was skinny.........really skinny!  Up until I was past 50, I did not weight enough to give blood. (You had to weigh 120 pounds)  I lived on the Gulf of Mexico for over 20 years and the people I worked with used to kid me that I could run on the beach topless and those watching would think I was a young boy....... I DID NOT think that was funny!!

I don’t have that problem anymore.  As a matter of fact, I would love to lose down to 120 pounds.  I doubt it is happening.  My grandma used to say that as a person got older, they should have some extra meat on their bones.  Not only did it make them look better (stretched the wrinkles out??) but they would live longer if they got sick.  She would be proud of me!

I was thinking about the topless thing this morning when I was trying to get dressed.  Like most of my MS friends, fatigue is one of my biggest day in and day out problems. This morning, like most mornings, I took my pj bottoms off and rested. I put on my panties and rested.  I put on my shorts and rested.  I took off my pj top and rested. I put on my tee shirt and rested.  Dressing takes a long time these days.  I often think I should get some of those fancy lounge pajamas and just keep them on all the time.  They sure would save some time and energy!

Brushing my teeth, combing my hair, taking a shower and all the other normal things everyone does takes so much out of me.  I have so much awe and respect for those with MS who have small children and/or work.  I really don’t see how they manage to do all that involves those activities.

At my last job, I worked four 10-hour days.  We often worked a lot of overtime.  During the last couple of years I worked, it was all I could do to make it.  By the end of the day, I hardly knew my name I was so mentally and physically exhausted.  My husband finally talked me into quitting.  I agreed only because it was taking a huge toll on me.  I was also afraid I was going to start making so many mistakes I would eventually be fired anyway.  That would have really hurt and I did not want to risk it.

I have thought about going topless or bottomless some mornings when I can barely pull on my shirt.  Between the two options, bottomless would be better.  I cannot begin to tell you how terrible topless would look, but I could get a really long tee shirt and cover up the bottomless.  Wonder how much those lounge pajamas or a caftan type outfit would cost and where I could get some????

I MUST Be Getting Old!!

Some of you that are younger may not remember the things that those of us older people do.  Although things are so much easier now, and computers have opened the world up to all of us, sometimes I get nostalgic for the “good old days”.

I was googling drive-ins.  For those who don’t know what that is, neither did Google at first!  It threw up things about flash drives and such.  Now a flash drive

NOTHING to do with a drive in!!

No matter how you look at it, the two do not resemble each other!! I guess it brought me into reality about how old I am getting and how removed I am from the present generations.

When I was working, there were quite a few young people working there also.  Our state was getting a new area code and we were talking about telephone numbers.  Some of us were talking about how telephone numbers used to have letters in them and we used to have to dial “0” and get an operator to dial a long distance number.  The younger girls had heard of an operator, but thought we were joking about letters in a telephone number.  They didn’t believe it even after several of us had confirmed it.

Being stuck in the house now that the summer has gotten really cranked up has allowed me time to think and see the world from a different viewpoint.  One of the most special times when I was young was lying on the ground and looking up at the clouds.  Each of us would try to “find something” in the clouds before one of the others of us could.  That would be really boring to most kids these days.

We used to find horse, flowers, Mickey Mouse and all kinds of things.  I guess now kids just Google what they want to see.

Another thing we loved to do, and I rarely hear about it anymore, is looking for lightening bugs.  Remember those wonderful little critters that would sparkle in the night?  They were so thrilling to us as kids.  Sometimes we would catch them and put them in a jar.  Grandma always made us put holes in the lid so they would not die.  She also made us let them go after a few hours so they could go on about their business.  But, while we had them, they were a special kind of magic that only a small child can fully enjoy.  (I think I must be going into my second childhood….I saw some out the door the other night and that old thrill of seeing those little sparkles ran all over me!!)

Take Two Aspirin And Call Me In The Morning

June 20th

Like most people with a chronic disease I spend a lot of time scouring the different websites looking to see how others are coping with their problems.  It may seem harsh, but it is comforting to know that others share your aches and pains and worries.

Having had what I consider a bad experience with Cymbalta, I often look to see how others cope with the everyday upsets of MS.  The wide range of  treatments and suggestions are often mindboggling.

I don’t consider myself a wimp.  When I fell and broke my leg, it was in the morning.  I put off going to the hospital until evening because I didn’t think it hurt bad enough to be broken.  As the day wore on, I realized that the swelling and pain were getting progressively worse and something definitely was wrong.

I gave birth to three children.  Although the pain was rather like trying to pass an elephant, I never asked for pain killers or help with the birthing process.  I was more fearful of harming the child I was trying to bring into the world by taking them than I was of getting some relief from the pain.

For some reason, MS has made me a different person.  Maybe it is the fact that it is a constant pain……….maybe it is because I am older and can’t deal with the pain as well…….and maybe because I just get tired of being tired!!  For whatever reason, I am trying to learn all I can about help with taming this monster.

There used to be jokes about doctors who told their patients, “take two aspirin and call me in the morning”.  This was because so many doctors had no clue as to what was wrong with their patient and no clue as to what to give them to help.  I feel like most of us with MS are in this category.

Until a proper medical regimen is established, most of us will just have to fight the dragon on our own.  We will keep trying different things and hope that one of them will help us enough to be able to stay strong enough to fight a little longer.  Besides, with the army of MS patients we have, we should be able to tame a little dragon or two in the world!!!

Enjoy The View!

June 20, 2012 - Summer Begins!!! (YUKKKKKKK!!!!)

Like most with MS, summer is NOT my favorite time of year.  I spend most of the time inside trying to stay as close to the a/c as possible.

I have the cooling vest, hat and wrist bands, but they only help if I am in the shade.  Being out in the direct sunlight is a no-no.  Nothing seems to help when the temperature starts staying above 70 degrees.

I have learned, though, that there is still a lot of things to enjoy in the “house bound” world.  I love reading, spending time on my computer and getting a Sunday Bible lesson together.  Buffy enjoys sitting on my lap and watching TV with me. Puttering around the kitchen has always been one of my all time favorite activities.  All of these things I can still enjoy and stay out of the heat.

Since my husband built our little room on the back of the house, I can sit there and enjoy watching the garden grow (we have some huge tomato plants with big tomatoes on them!) and the little critters playing in the backyard. 

I was looking out this morning watching the baby rabbit.  He is so cute and is getting a little braver about getting away from the shed where he was born.  I laughed as I watched him chase a bird, who was not in the least afraid of him.  He would hop all around the bird and come at it from different angles.  The bird would turn in circles watching him, but didn’t fly away.  I could almost see the confusion on the rabbit’s face wondering why he was not intimidating the bird and it was just standing there watching him.  It really was a funny sight.

It is wonderful, if you think about, how God made us so that we can adapt to whatever situation we are in if we want to.  Most of us with MS have had to drastically change our lifestyle from what it once was.  It is up to us how we accept this. 

Although life may not be what we had once envisioned it would be, we can still have a fulfilling one and share love and happiness with those around us……….just look out the window……….there is so much to see!!

Girls Day Out!

My grandmother had 10 children.  My Daddy was the youngest.  There are a lot of cousins and we always spent a lot of time playing together when we were young.  Although there was a vast age difference between some of us, we all loved each other and got along.

Several of my female cousins still live close and I am thrilled to be able to spend time with them. We always get together on each of our birthdays and around the holidays.  Sometimes we go out to a restaurant we have never been to and other times we have a “tea” party.

One of my cousins and I are teapot collectors.  It is so special when we meet at our homes.  Each of us brings a finger food type dish, dessert or other treat.  The hostess fixes the tea. We eat, laugh and then open presents.  It is a special time and we all have a lot of fun.

Although MS has greatly reduced my ability to cook anything really elaborate, the girls understand and take up the slack.  I can still manage to contribute something simple and don’t feel too bad about not being able to do a lot……..at least I tell them that.

Cooking is one of the things that I really love to do.  I have more cookbooks than I care to admit.  It is a joy to me to be able to find something new to cook or a twist on an old dish.  Being up to my elbows in flour is something I always loved.

At times I still try to make a special meal for my husband.  Sometimes it turns out really well, other times I get lost in the process and have to tone it down.  Either way, he is still complimentary and tries to make me know that he appreciates the effort.

I am thankful for my cousins and their love and support.  Even though I may not be able to join in the fun like I once could, there are still good times to be had and life is still good!!

(The one on the top right is me!....NO LAUGHING!!!!)

I SEE Noises!!

I really liked the movie “The Sixth Sense”.  Mysteries are my favorite type of movies and books.  This movie was one that I really did not figure out until the end. 

Remember Haley Joel Osment saying “I see dead people”?  Well, I see noises.  This is a type of synesthesia.  Synesthesia usually takes the form of seeing numbers, days of the week and months of the year as colors. Sound synesthesia, involves hearing sounds in response to visual motion. Over 60 types of synesthesia have been reported, but only a fraction have been evaluated by scientific research. Even within one type, synesthetic perceptions vary in intensity and people vary in awareness of their synesthetic perceptions.

On one of the MS sites, a lady described her synesthesia as this:“When I am TRYING to sleep, the smallest noise - my dog sighs, the bed creeks, that little "mystery noise" as the house settles - will send a bright flash of light across the inside of my eyelids. Somewhat like a sudden fireworks display that lasts only a fraction of a second. Its like a form of synesthesia, I see loud noises, the bangs come up as a flash , but if my dog barks it’s like a crossword puzzle pattern, I put it down to a leak of data between my ear nerves and my eyes. Along with the flash of light I feel an electric shock that makes my body twitch."

I am not sure, but I think this may go hand in hand with startles.  When I am startled, the noise/sound that startled me is in color.  I wonder if, since MS is a disease that makes the brain miscue, that it doesn't know what to do wtih the sound so it puts it in color? Sometimes it is a bright light; sometimes it is a kaleidoscope of colors. Sometimes when I look at people, I see an aura around them.  (No, I do not claim to “see auras” as some do and be an aura reader!) The world seems to be filled with colors that really don’t belong in the normal realm of things.

Other times, it seems like the world is filled with pastel colors and nothing is the bright color that it is supposed to be.  It is very confusing.  I guess since it IS a brain thing,  I will just have to adjust to.

Some noises, although very startling and upsetting to me are “pretty” and the sight is enjoyable.  I guess if you have to go through life “jumping out of your skin” at each little noise, at least you can do it in a beautiful, colored world!!

Fuzzy, Wuzzy Was A………..??

Remember that poem?  It was kind of cute when I was a kid.  So were a lot of other little poems and rhymes.  I guess we look back on them with fond memories.

Yesterday was a fuzzy, wuzzy day for me……..not as in “had no hair” (although mine IS rather thin!), but as in fuzzy brained and spacey.  Maybe it should be spacey, wacey?

Anyway, I spent most of the day in the recliner.  I then graduated to the bed for a few hours.  It was NOT a fun day!

My husband and I think it was the Cymbalta.  Tiredness, weakness and drowsiness are three of the side-effects.  I have experienced them big time the last few days.  Needless to say, today I did not take it and do not plan on taking it again unless something dramatic happens.

Over the years we have read about so many musicians, actors and all types of entertainers who were taking cocaine type drugs to keep them going and able to perform for hours on end.  Although I grew up in the hippie, drug years, I was never into taking drugs.  A boy at my school made some LSD in the school lab and walked out of the window on the third floor.  It was not a pretty sight.  It made quite an impression on a lot of us and curtailed a lot of drug use at my school.

Although there are several drugs that doctors prescribe to help boost energy for MS patients, I have not been able to take any of the ones I have been given.  They made me so nauseas I could not tell if they helped with the low energy level.   I do not want something that will be habit forming, but most of the medicines that are given for MS are to be taken the rest of our lives, since MS will be with us the rest of our lives.  So, I guess it would not matter if it was habit forming or not.   It is better than lying around all the time. It would be nice to have a few more drug options and be able to control a few of the side effects of MS.

If this is rambling, I am still a little fuzzy.  I hope by tomorrow it will be mostly out of my system.  This trying to hold myself up is rather miserable!

I think I will take spacey, wacey back to the recliner and watch some more TV………..or read a book………..or just day dream…….

Brain Fog

There is a really good article on The Patient Experience website. I want to share part of it with you.

“We all know that Multiple Sclerosis (MS) is a disabling set of symptoms; some of us know this better than others. People who have no experience of MS often do not realize the impact these symptoms can have on people’s lives. People with MS will either disappear from public consciousness or be mistaken for someone displaying erratic behavior, and there is ample evidence to show how people using wheelchairs are either ignored or talked down to.

One of the difficulties for the ‘public’ to understand MS is that people display a variety of symptoms which do not manifest in all in equal measure, so some people display very few visible symptoms; others are severely disabled within a few years and the range of disabling symptoms range from physical to cognitive and emotional. It is difficult for people who do not suffer from cognitive impairment to understand the impact this can have on the life of the person afflicted by it. This article aims illustrates what it is like to live with constant ‘brain fog’, sometimes known as ‘cog fog’ but medically described as cognitive function impairment.

Loss of memory is often one of the first sign that something is wrong, but there are others and different people may have none, one or many of these problems. If you are unlucky enough to suffer a range of cognitive function impairment the impact on your life and that of those who know you, can be devastating. In spite of being an intelligent person you might lose the ability to perform complex tasks such as map reading, mathematical calculations and list making for example. You might have problems multitasking, or planning and executing a simple project such as cooking a meal. But the effects of ‘brain fog’ do not stop there: people can have difficulty expressing their thoughts and emotions, meandering around a subject, struggling to find the correct words to express themselves. They may constantly repeat themselves either through faulty memory or uncertainty about how clearly they communicated. Often repeating the same things as a way of checking their thoughts. They describe their distress at not being able to make a decision; they talk about not being able to formulate their thoughts, of living in a kind of fog that makes it difficult to ‘see’ the problem and consequently the solutions to problems. Sometimes the confounding problem might be a simple question such as: “would you like a cup of tea?”

People with ‘brain fog’ can also be hypersensitive to environmental factors such as light, heat and sound. Hypersensitivity can make it difficult to cope with irritants that others cope with easily. Bright lights and sudden noises, small irritants cause disproportionate reactions which appear irrational and unwarranted to onlookers. To understand communications, problems and propositions as well as learning new tasks takes longer and may require many repetitions of the process before it is mastered.

At the same time people suffering from ‘brain fog’ can lose visual perception which has a double effect: they can appear clumsy because they will not see obstacles, especially small ones like wires and protruding shelves for example. But poor visual perception also makes them unaware of body language and other clues that inform about other people’s responses. This collection of symptoms has a profound effect on social interaction with friends and family.

People who suffer from cognitive function impairment are subject to different but as devastating disadvantages as a person with physical disabilities because employers, family and friends may perceive the sufferer as a difficult or incompetent person whereas their behavior is something they cannot help. These hidden symptoms lead to low self-esteem, depression, and a devastated and lonely life.”

I know this seems like a long blog for me, but this is a very important and often misunderstood part of what most of us with Ms experience.  This is not a once in a while thing………….it is an everyday thing.  What seems like a normal, average thing to do becomes a major accomplishment. 

Sometimes it is all I can do to remember how to comb my hair and brush my teeth.  I have sat on the bed in the morning and just looked at my shoes and socks and wondered what to do with them.  Not every day, but many days.  I try to write this blog each day to keep my mind working, but some days it is all I can do to make a complete sentence. 

I know most people relate these types of mental functions as having to do with Alzheimer’s or dementia in older adults.  To a degree, that is true.  But there are countless numbers of MS patients in their 20’s and up who go through these same things.  It makes for some very frustrating days for all concerned.

Brain Fog is a fairly good name for what this involves.  For me, the mental thought process is more like blown away….…maybe Hurricane MS seems like a more appropriate name!!

If It Walks Like A Duck………..

I went to my neuro last Friday.  My husband and I made a list of the symptoms I am having to talk with him about.

I told him about the lightning bolt headaches, the pain in the nape of my neck when I look down, the constant buzzing in my feet, arms and hands, the jello legs and so forth.  He listened as we read down the list and nodded.

I like him for the most part.  He is a little guy from India, very pleasant and quiet spoken.  The part I don’t like is his uncertainty and unwillingness to commit to a probable cause of my problems.  He is young and a text book doctor who does not believe things fit in a certain category unless all the symptoms are there as they are written in the book.

He tells me I have a lot of symptoms of MS, but the jello legs and such have nothing to do with MS.  I beg to differ.  If all the doctors would actually talk with MS patients and realize that there are none that I know of who “fit the criteria” for MS, they would begin to realize just how strange this disease is.

I go on a lot of MS sites and read what others are saying.  So many are in the same boat I am.  They go from doctor to doctor without any relief or understanding.  Some get so discouraged that they stop even trying to find a doctor.  They have no help with their pain and fall into that dangerous hole of depression.  I do not intend to do that.  Although it seems like a long road to travel at the moment, I am going to keep on it and make the best of what I run into.

I don’t care what I doctor wants to call what I have.  I don’t want to get on a high powered MS drug at my age anyway.  I just want someone to be willing to help me when something drastic happens that is out of the norm.  He can call what I have bubonic plague, jungle rot or ingrown toenail for all I care.  All I am asking is that he give me a little understanding and try to help me get through it……….until he reaches that point, me and my duck will just waddle along and quack to each other!

Looking Out My Window………

My husband and I always get up early and carry our coffee out to the back room and drink it.  We can see out in the back yard and enjoy watching the garden grow and the little animals running around.  There are usually squirrels, birds, cats and rabbits playing in the early morning.

This morning we had a new surprise: a little baby rabbit was venturing out from the shed to check out the world.  He/she hopped around near the shed door, peeped around the corner of the shed, and high-tailed it back inside.  The world evidently seemed a little too scary to try it yet.  It was a precious thing to watch and really started our day off with a good feeling.

I think sometimes I tend to get all wrapped up inside myself and forget all the blessings I have.  I have a fantastic husband, three precious children and two grandsons, a home that is paid for, furniture, clothes, food and many more things that so many others do not have.  I have some wonderful friends, a great family and countless acquaintances that really liven up my life.

Even though Stephen King and Nora Roberts are not shaking in their boots for fear of me taking over their readers, I have written two books that have had good reviews from those who have read them.  I write this blog, have published newspaper articles and had a great career as a paralegal. 

All in all, I am very blessed.

Since the onset of MS, it has been so easy to get on my potty pot.  I really have to watch those days and shake them off as soon as possible.  Even though I have so many things to be thankful for, as MS takes away the “normal” things of life, we tend to get resentful, bitter and depressed.  Maybe not to a dangerous level, but any level makes it harder to get through a day. 

My depression/anxiety is more prevalent at night.  Like most with MS, even taking sleeping aids I wake up in the middle of the night and have problems falling back asleep.  In that twilight time, “pity poor me” thoughts try to overwhelm me and I have to fight feeling that my life is useless. 

Even though I worked full-time most of my life, I was very diligent about keeping a clean house.  Now, you could write your grocery list in the dust.  I always changed the furniture around a couple of times a year to give the house a different look.  I’m not sure I have done that in over ten years.  I was always scouting cookbooks to try out new recipes.  I still love to read cookbooks but rarely have the stamina to attempt to try out something new to cook.  My life is so different now and I feel like I am just sitting around spinning my wheels and getting no place.

God has His own special way of giving us a ray of sunshine to brighten our days.  Sometimes it is a smile from someone, sometimes a soft rain………..and sometimes it is a little bunny venturing out into the world for the first time!

Pocket Change

Do you realize that 3.5 BILLION dollars was spent on researching male pattern baldness last year?  Do you also realize that over 10 BILLION dollars was spent on botox injections?  Am I the only one, or does this seem way past insane??!!!

169 million dollars was spent last year for MS research.  43 million dollars was spent for ALS research.  152 million was spent on Parkinson’s research.  Do you see the pattern here?  It seems that people are more interested in how to “pretend” to be younger than they are in health matters.

I started really thinking about this a while back.  I was watching a movie on TV.  One of the female stars has obviously gotten collagen shots in her lips.  It was grossly overdone and she looked awful.  I would think I had gone through what was probably a fairly costly, painful process and end up with the results she did.

Another thing that has had me thinking about the ways medical science wastes money is the hair loss research.  There is always a hair loss commercial on TV with both male and female patients.  The cost of buying and maintaining quality hair replacement systems over 15 years is approximately $28,125.00 ($1,200 plus $675 in annual upkeep = $1,875 x 15 years = $28,125.00).  Hair transplant costs typically cost between $3.00 to $8.00 per graft, with $5 to $6 per graft being about average. It is normal for the price per graft to drop as the size of the surgical session increases. Many clinics will offer a reduced rate per graft once a certain surgical session size (i.e. 1,000 or 2,000 grafts) is exceeded. No matter how you look at it, either option is a lot of money.  None of the options are covered by any insurance plan because it is a cosmetic procedure.

I understand insurance companies not covering these things.  What I don’t understand is why they don’t cover much of the health related care options.  If they are still in trial, I can see that.  But many times our medications are so expensive that we cannot afford to take them.  It is a very sad thing to me and says so much about where most people’s heads are. 

I have watched a lot of movies and TV in my life and accept that some of us get older!  I feel sorry for those who come to grips with that fact.  If you live, you will get older and look older. 

Besides, if I figured out how much plastic surgery and such it would take to make me as beautiful as Sandra Bullock, I would have to live a couple of hundred lifetimes!! J

Should I or Should’n I???

I was given a prescription for Cymbalta (Duloxetine)  According to PubMed Health, this medicine  is used to treat depression and generalized anxiety disorder (GAD; excessive worry and tension that disrupts daily life and lasts for 6 months or longer). Duloxetine is also used to treat pain and tingling caused by diabetic neuropathy (damage to nerves that can develop in people who have diabetes) and fibromyalgia (a long-lasting condition that may cause pain, muscle stiffness and tenderness, tiredness, and difficulty falling asleep or staying asleep). Duloxetine is also used to treat ongoing bone or muscle pain such as lower back pain or osteoarthritis (joint pain or stiffness that may worsen over time). Duloxetine is in a class of medications called selective serotonin and norepinephrine reuptake inhibitors (SNRIs). It works by increasing the amounts of serotonin and norepinephrine, natural substances in the brain that help maintain mental balance and stop the movement of pain signals in the brain.

Some of the side effects include: itching, extreme tiredness or weakness, confusion, fever, sweating, severe muscle stiffness, blurred vision, difficulty breathing or swallowing sweating or night sweats, dizziness, headache, tiredness, weakness, drowsiness, muscle pain or cramps, uncontrollable shaking of a part of the body. 

There were several more side effects listed, but I am asking these questions:  If I already have most of these symptoms, (1) why should I take a medication that might increase these symptoms, and (2) how would I know if the medication is causing a certain symptom or it is just my normal self?

More and more I am questioning things given to us by physicians.  If I learn what it is supposed to do and don’t know if it will help or hurt, should I take it or not?  Most of the drugs I am given seem to have side effects that are the problems I am already experiencing.  Go figure!!

Oh well, guess I will just take the medications I am prescribed and hope that they don’t make my symptoms get worse.  If they do, I can stop taking them.  If they help, I will be yelling “yippee” and pass the information along to others!!

I LOVE THIS!!!!!!!!!!!!!!!

The Monster Within

We’ve all had our share of monsters in our lives.  I have always loved a good mystery story, but when I was young, they would often leave me pulling the covers over my head and hoping that “shadowy figure” did not make its way into my bedroom and get me!

Many children have to face bullying in school.  Whether they are too fat, too thin, too rich, too poor, or whatever, most kids have had a taste of being ridiculed by their peers.  Most of us weathered the challenge and came out OK from it.  Some have given in to the taunting and tragically taken their own lives because they could not face it. Some of us still have scars from the heckling that we carry with us all our lives.

As we grow older, hopefully we learn that most of the criticism that others heap on us is out of jealousy.  I have known some of the most talented, beautiful people who were constantly taunted by others because of jealousy.  It caused terrible hardships on the ones who were receiving these taunts and they were not able to really enjoy the success that they should have been able to.  I always think of Marilyn Monroe when I think of this.  She was so beautiful, but always felt she was not smart enough or pretty enough.  Such a sad ending for a lady who had so much to offer.

Those of us with MS have our own special monster to deal with each day.  No matter which way we turn, the monster is constantly trying to taunt and bully us into submission.  The war is never won, but we do win a few battles now and then.

One of the biggest and best weapons I have is my husband.  He is always scouring the MS sites to see what he can learn to help better understand my struggles and maybe find some helpful hints on dealing with some of the problems I have.  He is my strength and without him I don’t know if I could make this journey.

Another great weapon is the bond those of us with MS share. Unless someone hacks into one of our sites trying to be a troublemaker, the only thing found there is love and encouragement.  Although none of us have all the answers, together we can usually come up with encouraging words or possible things to try to ease the pain someone may be going through.  Many times it eases our struggle just to know that others are in the same boat we are and paddling along.  I guess that old saying “misery loves company” is true!

Until a cure is found for MS, we will all have to try and stay strong in our fight.  Some battles are much harder than others.  Sometimes it seems like giving up is the only answer.  Sometimes that deep, dark hole of depression wants to swallow us up.  We may give in to each of them during difficult times, but we are all fighters.  If the world ever needs tough, longsuffering soldiers to fight the battle of the galaxy, they should look to those of us with MS for role models………we fight the monster within everyday and most of the time we come out winners!!!!!!

Jello Flavors

I got up and walked across the floor.  It may not sound like much, but if you’ve ever tried that with Jello legs, you know how awesome it is. Believe me, when you have Jello legs you don’t want to do this…….the floor is very hard when you hit it.

I have also tried to get up with NO legs.  That is also a no-no.  When you try to stand up and there seems to be no muscles in your legs, you don’t get very far…...well, actually you do…..but it is not in the direction you wanted to go.

Those of us with MS go through a lot of phases with different parts of our bodies.  My legs are one part of me that is so unpredictable.  Some days I can walk fairly well.  I bump into the wall and the furniture, but I usually get where I am headed.  Other days, I sit in the recliner or lie on the sofa because my legs won’t go where I want them to.  Some days, I am blessed to get out of bed because my legs won’t hold me up.

I usually use a cane to walk out in public.  Open areas scare me.  There is nothing to hold to and if I start to fall, there is only one way I’m going.  I really don’t like the cane because I don’t feel that it gives me the support that holding on to my husband does.  Most of the time, I am holding on to his shirt, his hand or the back of his pants at the waist.  This seems to work for both of us and makes me feel more secure.

My husband is trying to talk me into getting a walker with a seat and a storage area.  Many times when we have been shopping, I have wished I had one.  I could just turn it around and rest for a moment on the seat.  It is a hard decision for me to make because it means that I probably NEED it rather than just wanting it.  I guess we all hate to think we are getting to that point and fight it as long as possible.

I am thankful that there are these aids available to most of us.  We have a Hospice store nearby and can often get things there without spending so much.  Unfortunately, things are not always there when we need them and we end up paying ridiculous amounts of money at a drug store or online for something that really should not cost that much.  For many of us who are not on Medicare or have not been approved for disability, these costs are out of reach and we do without.

I used to have a recipe for a lime Jello dessert bar.  It was fabulous!  I wish I could find it……….I like that use of Jello much better!!

Read My Mind

I am wondering if there is any dog more spoiled than Buffy.  She sleeps with us, eats with us, sits with us and generally wants to be every place that we are.  If we are not paying attention to her, she gets very pouty and whiney!

(As you can see from this photo, she was wondering why I could possibly rather see something on the computer when she is there to look at!)

I have noticed that she expects us to read her mind.  When I sit my drink down, she will stand by the glass, stare at it, then at me and back and forth until I let her have some of it.  If I am not paying attention to her wishes, she will “buff” softly, which seems to be a cross between a bark and a burp!  She does not have to make much of a fuss because we always cater to her wishes.

Wouldn’t it be nice if everything was more that way……..we could think about the bank and receive money, think about the groceries and they would appear in the cabinets, etc.  We would not have to worry about not having something, because it would always be there when we wanted it to. (There is another side to that, of course, but I am thinking of the good things.)

Buffy has also learned that if she stares at anything long enough, we will get it for her, or change what is bothering her.  If we are “in her spot” on the bed, she will walk up your chest and stare at you until you realize you are wrong.  If she cannot get where she wants to be, she will stare at it, give a little buff, and she will be taken where she wants to be.

That is not to say that we feel so very fortunate and blessed to have her.  We are rewarded with lots of puppy kisses and smiles throughout the day to remind us that she loves us.  She is always there to love and snuggle against you when you feel bad and jump and play with you when you are happy.  She is a real charmer and a joy in our lives.

I was also thinking how nice it would be if we could look at our legs and say “be gone” and the MS would instantly jump out of them……or stare our pains and numbness away……or move our heads in a different direction and our thoughts would return to normal…………or…………(fill in the blank!)!!! J