Hotter Than…….......….Whatever!

I think it is going to be one of those summers.  The temperature is supposed to be in the mid-90s most of the week.  I am not sure I am ready for this.  I know I don’t have a choice.

It really bothers me that there is no way to explain to someone what the heat does to me………..and I am not talking about 90s, I am talking about 70s.  If the sun is bright, the 60s are sometimes hard to deal with.

I was sitting with Mother in the waiting room at the hospital the other day and started talking with the lady on the other side of me.  She commented on the fact that I would pick up a magazine and fan once in a while.  She said she knew how I felt because she had hot flashes for many years.  She was over them now and was so grateful.  I told her that I have MS and getting overheated is a constant problem.  She looked at me like I was a visitor from Mars.

I don’t seem to be able to get across to anyone that MS heat lasts practically all the time.  It is not night sweats, day sweats or in-between sweats.  It is heat that radiates from your insides and nearly takes your breath away.  It makes my head pound, my legs and arms weak, my vision blurry and my thoughts turn to mush.  If it goes away it is only because I am in front of the a/c or it is freezing outside.  And, sometimes, it is still there even then.

The tingling sensation that most of us feel intensifies.  There are millions of little shockwaves running up and down my legs and arms, feet and fingers and sometimes my face.  Although it is not exactly what one would call a painful sensation, it is highly unpleasant.

Per the MS website: “Many people with MS experience a temporary worsening of their symptoms when the weather is very hot or humid or they run a fever, sunbathe, get overheated from exercise, or take very hot showers or baths. For example, some people notice that their vision becomes blurred when they get overheated—a phenomenon known as Uhthoff's sign. These temporary changes can result from even a very slight elevation in core body temperature (one-quarter to one-half of a degree) because an elevated temperature further impairs the ability of a demyelinated nerve to conduct electrical impulses.  For many years, the “Hot Bath” test was used to diagnose MS. A person suspected of having MS was immersed in a hot tub of water, and the appearance of neurologic symptoms or their worsening was taken as evidence that the person had MS.”  I don’t know about you, but I am very thankful that this is no longer used as a method of making a determination of MS!

My husband probably gets tired of me asking if my face is flushed.  To me, my face sometimes feels like it is radiating (kind of like a bad sunburn feels) and should be beet red.  Sometimes it feels like my arms or legs feel like that also.  One of the worst places that burn and tingle is my back…….especially down my spine.  He often rubs a pain cream on it which usually helps.  It is hard to let him do this since it is so sensitive to the touch when having a flare up.  The cream is cooling, though, and worth the initial pain.

I have talked with several people who are so excited about going to the beach this summer.  I listen and smile, cringing on the inside at the thought.  I am happy that this will make them happy and hope that it comes to pass and they have a wonderful time.  As for me, I will stay at home in the coolness of the a/c, wave bye to them and wish them well!

 

 

Strength in Gentleness

My Grandma raised me.  My parents worked at night and she took on the job of taking care of me.  I am sure that it was quite a job.  I was skinny and full of energy when I was young.  Nothing like what I am now.

When I was born, she was 68 years old.  I was the child of her 10^th child.  Needless to say, she already had a lot of grandchildren by the time I came into the world.  She had raised her children and now was ready to raise one of her grands.

My grandfather died when my Daddy was 9 years old.  Grandma still had several children at home at that time and I am sure it seemed like quite a burden to face when he died.  One of my uncles returned home to help her.  He was a kind, sweet man and eased her burden by chipping in to help. 

My first memories of grandma were when she was in her 70s.  She would wash clothes in a ringer washing machine, put a basket of wet clothes on her hip and walk down the back steps to the clothesline to hang them to dry.  I often wonder how she did the things she did.  She would sweep, mop and vacuum the house. She would cook great meals and still have time to play with me.  When she bought a TV, we would spend hours watching Mickey Mouse and Howdy Doody.  She was never too busy to cater to a little girl who totally adored her.

As grandma got older, her spunk didn’t.  She fell and broke her arm one time when she was in her 80s.  I remember the doctor telling her that she would probably never regain the use of her arm at her age.  A couple of months later she gleefully raised her arm and showed him that this had not defeated her.  Although she was a gentle and kind person, she had a quiet determination that I always admired.

Many days I sit here and wonder what MS will hit me with next.  Every day I fight to keep doing the things I can and hoping that this disease will not progress any faster than it has.  Even though I work hard not to do so, sometimes I feel sorry for myself and angry that I can no longer go places and do things that I could just a short few years ago.  Sometimes I would be so easy just to give up and wallow in self pity.

When I get this way I often see grandma in my mind.  Her strength always shines through whatever task she had to do on any given day.  No matter what was going on, I have never heard her raise her voice or stomp around in anger.  She was quiet, soft-spoken and the most loving person I have ever known.  

When she died, I thought my world would end.  I was 24 and not at all ready to give her up.  Even though she was 91 years old and bed-ridden, she never complained and always had “I love you” on her lips.  It was the last thing she ever said to me.  Part of me will always ache with the need to have her hug me one more time and tell me this.

I hope in some small way I have inherited a part of her courage.  I know that many times I fail miserably.  But when I do, thinking of her lifts me up and puts the fight back in my spirit.  I know this is what she would want me to do.

When I get to Heaven it will be so wonderful to be with her again.  I know that God loved her so much and wanted her close to Him.  I understand that.  I am anxious to get that hug from her.  I hope she is still singing those little songs she used to sing to me.  I bet it makes God smile…………

 

To Hear or Not to Hear

One of the symptoms of MS that has really bothered me lately is hearing loss.  Per the MS website: “Hearing loss is usually associated with other symptoms that suggest damage to the brainstem - the part of the nervous system that contains the nerves that help to control vision, hearing, balance, and equilibrium. Hearing deficits caused by MS are thought to be due to inflammation and/or scarring around the eighth cranial nerve (the auditory nerve) as it enters the brainstem, although plaques at other sites along the auditory pathways could also contribute to hearing problems. Plaques are abnormal areas that develop on nerves whose myelin-- the fatty sheath that surrounds and protects nerve fibers--has been destroyed. Plaques cause the nerve impulses to be slowed or halted, producing the symptoms of MS.”  Not very understandable, but meaning that MS can cause hearing loss due to the damage to the nervous system that controls our senses.  (I often wonder why explanations can’t be just straight-forward and not rambling all around with words the average person doesn’t understand!)

I have noticed lately that my hearing is becoming more and more damaged.  I often find myself cocking my head to try and pick up more of the sound waves that are coming from the direction of something I want to hear.  I am not sure that it helps much because I still have trouble hearing what I want to hear.  It is very irritating.

As I have mentioned in previous blogs, my husband does not hear well at all.  He is constantly asking me “what did they say?”.  I am beginning to not be able to answer him.  I have tried to get him to go to the doctor and get his hearing tested to see if something can be done for him.  He keeps putting it off.  I don’t think I will be like that.  I am going to talk with my neurologist in July to see if there is something that can help with my hearing loss.  It bothers me too much not to get it checked.

I am not pessimistic with this problem, but I do fear that it will be one of those things that I just have to learn to deal with.  As with speech and vision, MS often damages these and nothing can be done about it.  I have periods of time when I do not talk very well and worry that it will stay that way.  Fortunately, so far, it comes back to normal after a while.  One day it may not.  I will deal with that problem if/when it happens.

I do not mind at all being fitted for a hearing aid if that will help the problem.  I have talked with a lot of people over the years that balk at this.  They always say that it is unattractive and only for “old people”.  If it means the difference between hearing and not hearing, I do not care if it is the ugliest thing on earth.  I had rather hear than not hear.  As for being for old people, that no longer bothers me either.  Everyone that is blessed enough to get older learns that things that we taboo when we were young is a necessity as we age.  Since MS often greatly speeds up these problems, age has become a moot discussion.

We live in a world obsessed with looking young, being thin and being active.  MS takes away a lot of these options.  Most of us with MS are not all that active and our diet consists of things that we are able to consume without interfering with our meds.  As far as looking young, this becomes the least of our worries………………trying to keep as much in the game of life as possible becomes our number one priority.  Looking young is WAY down the list, if it is still on it.

My husband and a friend of ours started losing their hearing on a parallel course.  Both spent most of their time saying “huh” and asking for the conversation to be repeated.  Our friend had his hearing checked and was told that the problem he has cannot be fixed.  I think that Howard might be afraid that this would be the answer he would get also.  I do hope that he will one day get it tested to see if help is available.

Until something can be done for us, I guess we will just go along with hearing less and less of what goes on in our day.  There will be a lot of “huhs” in our routine.  I wonder how hard sign language is to learn………….. J

Exorcism

According to the New Advent website, “Exorcism is (1) the act of driving out, or warding off, demons, or evil spirits, from persons, places, or things, which are believed to be possessed or infested by them, or are liable to become victims or instruments of their malice; (2) the means employed for this purpose, especially the solemn and authoritative adjuration of the demon, in the name of God, or any of the higher power in which he is subject.”

Like a lot of people, I am fascinated, yet horrified, at the thought of exorcisms.  It is something that is highly contested as being real and has been the subject of countless books, articles and movies.  It is intriguing to many of us to think of the fight of good and evil so apparent in a human.  That is also the horror.  Being possessed is frightening to those of us who believe it can happen.  An exorcism is quite an ordeal to go through both for the victim and the priest performing the rite. 

Sometimes I think of MS and other diseases as possession. These diseases occupy our bodies without our permission and refuse to let us be free from them.  Being possessed by something that you do not want is frightening.  It is a constant battle of will between us and our disease(s). 

I guess in some ways our doctors could take on the role of the priest in the exorcism rites.  The doctor watches our symptoms and tries to figure out exactly what is wrong with us.  He offers treatments in the hope of easing our problems.  If that does not work, he runs tests and tries again to find something to make our lives easier.  But, unlike the priest, he is not able to completely erase the cause of our problems.

As in an exorcism, there are books to guide in the quest to conquer the evil at hand.  Each step is written out for the one who is trying to help the victim to follow.  If progress is not made at first, the “helper” may start over and try to retrace his steps to see if something was missed or misread. As some priests find out during an exorcism, no matter how closely they follow the rites or how strong their belief in the process, the possession is not easily removed.  Some of us have experienced doctors who eventually just quit trying and ease us into the back of the line of their patients.

I have been wondering if there could not be a different type of specialized doctor for MS or other diseases.  This doctor would not only have the training for these diseases, but would also be a person who was interested enough in his patients to be willing to explore different options apart from the norm.  This doctor would try to heal the body and the mind.  As most of us know from experience, when the body is constantly fighting us, our mind gets tired of the process, too.  As our body deteriorates sometimes the mind goes right along with it.  Keeping both strong is often impossible.  Keeping one strong is hard enough.

The special doctor would never tell us: “It is not a symptom of”, “this should have worked”, “there is nothing left to offer you”, “you need to go see a (blank) doctor”, etc.  This doctor would stick with us through thick and thin and always try his best to help us, not pawn us off on someone else because we don’t fit into his scheme of things.  I know what you are thinking, this doctor does not exist.  You are right.  As far as I know, he doesn’t.

But there are some really good people who are trying to make a difference in this world by stepping out of the box.  If one thing does not work, they try something different.  It may not be what they have learned in medical school to do, but it is something that they feel might help the situation.  I really feel, deep in my heart, that there will be a different breed of doctor in the near future because people are beginning to demand it. 

Until then, I will continue my search for a doctor who performs exorcisms.  If you find him first, please give him my name!

 

Life’s Little Addictions – Part Two

I have been thinking about this a lot lately.  Like I have said before, I don’t understand why people are taken off medication when they are old or dying because “they might get addicted” to it.  That definitely does not compute in my brain.  Who cares if you are a 95 year old morphine addict if it eases your discomfort and helps you live until you move on to the hereafter.  And even if you are young, if you are at death’s door and in pain, what difference could it possibly make for you to die an addict?

I know that many will disagree with those statements.  I know that many oppose marijuana use for sickness and would fight tooth and nail to keep it from being legal.  I know that there are many who do all kinds of things to keep from taking medication when they are hurt or sick.  This does not make, in my opinion, those of us who do take medication weak.  It only makes us human.

I am an addict.  There are things that I take for pain, twitches, movement and such that I will only give up kicking and screaming.  Without these things I would not live even half the life I live now.  Without these things, life would barely be worth living.  Without these things, more of us would probably slip into a really deep depression or the suicide rate would go up.

Even though I take what I consider to be a large amount of medicines, there are countless others who make the medicines I take look like nothing.  I take a fairly popular pain medication twice daily.  I have a friend who takes it six times daily.  She is still in a lot of pain but fears that if she takes any more of the meds she will be unable to function.  Is this an addiction?  Most would say yes.  Those of us with diseases would say no………it is our way of  coping with the life we have now.

I know that people who have arthritis and different forms of pain take medications to try and ease their pain.  Unless it is an advanced, crippling type of this, most people would never consider trying some of the meds we try.  I know that arthritis is very painful.  I wonder if the people with arthritis know how painful MS is.

I am in no way advocating addiction or pain medication.  Well, I guess maybe I am.  But in a round about way.  Shooting up heroin and such, snorting cocaine or whatever, drinking till passed out and other types of things to retreat from society is not the type of addiction I am talking about.  These types are for people who don’t want to face life and deal with all the problems it can throw at one.  I feel very sorry for these people and wish they could make a better choice on their way to deal with life.

I think I am really talking about an addiction to life.  Of being able to function in a world that thinks only the prettiest, smartest, fastest, etc people are the ones that count.  We all count.  The ones who have to walk with a cane count.  The ones who have to walk with a walker count.  The ones being pushed in a wheelchair count.  The ones who are unable to get out of bed count.  The ones who cannot carry on a conversation count.  The list goes on and on and each person in every list counts. 

Each person on this earth has limitations and addictions.  No matter how special and effective we want to feel, there are things we cannot do or cannot do without help.  For those who feel they have none, God bless you……..it will really hit you hard when yours slap you in the face.

As it is, I think I will curl up in bed, drink a cup of coffee and watch one of my TV shows………I love my addictions (or most of them) and plan on enjoying them as long as possible………I hope your addictions are good ones and make life  better for you, too!

 

Life's Little Addictions - Part One

Per Wikipedia, “Addiction is the continued use of a mood altering substance or behavior despite adverse consequences, or a neurological impairment leading to such behaviors. Addictions can include, but are not limited to, drug abuse, exercise addiction, food addiction, sexual addiction, computer addiction, and gambling. Classic hallmarks of addiction include impaired control over substances or behavior, preoccupation with substance or behavior, continued use despite consequences, and denial. Habits and patterns associated with addiction are typically characterized by immediate gratification (short-term reward), coupled with delayed deleterious effects (long-term costs). Physiological dependence occurs when the body has to adjust to the substance by incorporating the substance into its 'normal' functioning. This state creates the conditions of tolerance and withdrawal. Tolerance is the process by which the body continually adapts to the substance and requires increasingly larger amounts to achieve the original effects. Withdrawal refers to physical and psychological symptoms experienced when reducing or discontinuing a substance that the body has become dependent on. Symptoms of withdrawal generally include but are not limited to anxiety, irritability, intense cravings for the substance, nausea, hallucinations, headaches, cold sweats, and tremors.”Like most people, I have quite a few addictions.

There is an ad on TV that I find amusing.  It concerns an addiction treatment center.  The facility accommodates approximately 200 people and costs $7,500.00 per month, depending on what type of care you need.  They profess that they can cure anyone of any type of addiction problem.  Let me see ....... for $7,500.00 a month I think I could kick anything on my own!  I would like to open a place like that.  Assuming you are filled up, you would make $1,500,000.00 a month, give or take a few thousand.  Yeah, I think I could manage a budget like that <rolls eyes>!

Like I said, most of us are addicted to several things whether we realize it or not.  I am addicted to my coffee in the morning.  If I don’t have any, I am not a happy camper or fit to be around.  I like the taste, the smell and the feeling it gives me.  Yes, I am totally addicted to it, but will forego the treatment center.  I like my addiction and plan on keeping it.

It is probably obvious that I am addicted to writing.  I write stories, poems, this blog, letters to friends and family, emails and countless other things.  Those of us raised in the era before home computers learned to have a vivid imagination to help entertain ourselves.  As long as I can remember there have been stories dancing around in my brain begging to be let out.  Unless I write some of them down and let them have a life of their own I think they would probably drive me crazy.  A writer once said that writers were only as crazy as their readers.  That, my friend, puts the blame squarely on YOUR shoulders!

People in my age group are usually avid readers.  Television was a rare thing in households when I was growing up and reading was the “in” thing to do to pass the time and be entertained.  I love entering the imagination of others in books.  It is, I fear, becoming a lost art.  Although people who have Kindles and such read, there is nothing like holding a real book………turning the pages……..smelling the print………feeling something real.  I wish everyone could experience that love of books but probably, in the not too distant future, books will be a thing of the past and only found in museums.  So sad…….

I am developing a television addiction.  There is a TV show called “Perception” that airs on the TNT network.  Being kind of off centered myself, I find it very interesting and amusing.  The main character is a neuropsychiatrist who helps the FBI solve cases.  The part I love is not the crime part, but the fact that the character’s interest in neuroscience stems from his own long history of paranoid schizophrenia. As a high-functioning schizophrenic, Pierce's hallucinations sometimes enable him to pick out subtle clues in solving crimes.  It makes for a really off-beat type of humor that appeals to me.  If you get a chance watch the show and let me know what you think.

Since this is becoming quite long, I will continue with more tomorrow.  Believe it or not, this does have a point I am trying to make and I will get to it as quickly as possible!

Lazy, Hazy Day

Our bird, Hadji, is molting.  He looks really bad.  I keep telling him that only his mother could love him.  Since I am his mother, he knows I love him no matter what.  His feathers itch as they get loose and he is having a hard couple of weeks.  Hopefully it will be over soon and he will be his beautiful self and not irritated any longer.

I spent a lazy Sunday at home.  Mother mostly napped and Howard had a few errands to run, so I was mostly left alone.  I really don’t mind.  When I am alone, I don’t have to constantly be on call (Mother) or trying to make Howard think I feel OK.  It takes a lot of energy for those things.

Sometimes we just need to settle back and regroup.   I was thinking about the storms coming our way some.  I have told you many times that I am afraid of storms.  I believe God will take care of me, but when the lightning flashes and the wind kicks up I go into panic mode.  The old fears from Hurricane Hugo come crashing back into my mind and I become no longer sane.  (I guess it really doesn’t take much!)  I was trying to play out a storm in my mind and pace myself to face it.

I was also thinking about all the doctors I am making appointments with to see in July.  It seems overpowering when I put them all together.  I am not a “doctor person” anyway, so I am not at ease with these thoughts. 

A friend of mind put a chart online of foods people with MS should/should not eat.  It is all well and fine but the MS food and the Crohn’s food are almost total opposites.  I really have to lean more towards the Crohn’s chart because of the pain it causes me when my eating habits don’t stay close to it.  I guess the MS will just have to fend for itself in this case.

I spent some time listening to Buffy’s tummy rumble.  She takes spells where her stomach is upset and her stomach “talks” almost non-stop.  No, it is not food caused because she eats the same thing all the time.  I guess puppies are like people…………sometimes, no matter what you do, you get a little sick.  I am giving her a lot of extra love and praying that she will soon feel better.

Howard and I have been looking into sitters for Mother.  She does not want to be alone and we need to go out sometimes if nothing but to the grocery store and doctor appointments.  This is not an easy task.  There are quite a few companies that advertise services for this purpose, but I don’t know anything about them.  I don’t know about you but I often look up reviews on the internet to get other people’s opinions of things.  I was really happy with this until I saw a commercial on TV.  It is a car insurance advertisement.  A guy is looking things up on the internet and the girl says she heard you can’t do that.  He asks where she heard that.  She says on the internet.  The commercial goes on and on but the gist of it is that you cannot always believe opinions on the internet because it could be someone paid to praise/dump on a company.  This causes me a little concern with finding a sitter service review.  I guess I will just have to call around and see if anyone has a recommendation.

I have tried to find some useful pastimes besides spending so much time online.  I have started crocheting again.  I made a purse for my cousin for her birthday and it turned out pretty good.  I decided to make another to use myself.  Since I did not use a pattern and made the directions up as I went, this one turned out a little different than the first one.  I will take a picture of it and put it on here sometime.  I hope it will turn out OK and I won’t be ashamed to take it with me.

Sometimes rambling is good for the soul.  It washes a few things out of one’s head and makes room for some rational thoughts.  I am trying to unclutter my brain and get something useful running around in there.  I am not sure it will work, but I am giving it a try anyway!!