ENABLE YOURSELF

I read your comment with interest.

It takes most people a very long time to get a diagnosis of MS.  It did me.  What’s interesting is this, what they call normal MRIs can, in fact, be abnormal ones.  It depends on who is reading them.

Have you told your testers that you want a copy of your MRI results sent to you?  I would also ask to receive a copy of the actual films, which you can get on CDs now.  I always get copies of everything from every doctor I go see.  This way, if you go see a Doctor, new or old, and they don’t have a copy of the film or the reports, you can bring yours and allow them to copy it.  Don’t ever just give it to them.  Make sure you get it back.

I used to compare my MRI films with those I found online.

The thing is, as we age, we all get lesions in our brains.  It’s the preponderance of lesions in certain areas of the brain, whether they enhance or not, OVER TIME, that eventually leads to a diagnosis of MS.  Or, if you have the right Doctor, it can also be given as a diagnosis when everything else has been ruled out.

Are you seeing a neurologist?  I hope so.  If you find a nice one, stick to them.  They will be your most helpful doctors.

I’m sorry for your anxiety over the lack of a diagnosis.  We all know what that is like.  Most of us had to wait a long time with the same results, the questions on friends and family faces.  They too start to question you.

As far as your friend on that trip, she probably did not realize how bad off you were until she spent a lot of time with you.  Sad to say, her reaction to you is quite typical of people.  Those people who reject you can be handled in one of two ways.  You can try to educate them or you can just push on and leave them behind.  By doing either one of these things, you have taken control of the situation instead of allowing the situation to take control of you and your feelings.  I believe in this case, I would just push on.  If she contacts you then that’s lovely.  If she doesn’t contact you, that’s okay as well.  Expect more of that and then you won’t be surprised or hurt.  It is the arming of yourself with knowing what happens that protects you from debilitating emotional wounds that people can inflict upon you.

Read MS Life in reverse.  Go to the earliest date and watch the progression.  You will learn a lot in here.  Comment and “like” along the way.  It helps the blog.  Also “Follow” the blog and you will receive your blog in your email.

We are here for each other.  There is no need to feel alone.  In the face of adversity, find people who are of “like” mind.  This way you become a part of a community.  It’s helpful.  Be careful where you hang out.  You don’t want to be in groups where the talk is mostly negative.  You want uplifting sites.  There is enough negativity going around.

Pity parties are okay but it gets lonely at a party where no one else wants to go.  Have your party and then leave.

My site’s byline is called “Enabled by Disability”.  Focus on what you can do instead of what you can’t do.  There is much to be done in your life, particularly since you are still young.  Recognize the good when it comes along, not the bad.  Learn to develop a protective shell around you.  Reach out but don’t be surprised if your hands are slapped away at times.  That’s okay if it happens.  It only means that they are not to be a part of your life.

Think of your disabilities as a rebirth.  An ability to rebuild your life using new tools.  Not many people are faced with what you are faced with but see it as an opportunity.  Wake up and take small steps in moving forward.

I always tell people, “If you know you have MS despite what the tests reveal, then you probably do, or even some other form of neurological disease that mimics MS.  Stop waiting for a diagnosis and live your live to its fullest despite having a neurological disease.”

In ending, I would like to use your comment as part of an E-Book that I am writing.  There is no compensation for it, but if you want, you will be added as a contributor to the book.  I won’t specify how you contributed so that people can’t pin that comment to you.  The other thing is that I can use your initials as the commentator without being a contributor to the book.  Either is fine.

If you would allow this, then I will have you sign a release form so that there is no legal problem in the future, not that I would expect there would be.

Thank you for your comment and I hope this helps.

Magdalena

 

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MISERY LOVES COMPANY?

Misery loves company?

Multiple Sclerosis, like so many other debilitating diseases that plunder your life with no end in sight, is a disease that wreaks havoc on your life.  My life with MS has taken control for the past several months to a point that I’ve been unable to do much, including writing.

For some, writing might be a release of sorts, but for me, who is trying to relay a message of hope and laughter in the face of unquestionable progression into an even more profound state of disability; it has made me unable to type such positive messages.

The difficulties that have beleaguered my life have nothing to do with MS.  Unfortunately, however; we all know that any traumatic events in our lives will set us back.

I love writing.  I love composing music.  I’ve been unable to do either one.   My pianos sit quietly waiting for me, all the while collecting dust.  I won’t let anyone touch them to clean them because I simply don’t want anyone touching my instruments.  They mean too much to me.

I pass the dusty pianos many times a day.  I look at them feeling guilty, however; the pianos aren’t judging me.  They sit there quietly waiting for their lover’s touch.

Writing?   I have done everything else at my computer except write a decent piece of work.  I’ve played games, done day trading, gone on Facebook only to log off immediately, and so forth.  I’ve spent a lot of time watching You Tube videos.  They help pass the time.  Don’t even get me started on why I don’t watch television to pass the time.

I feel as though I’m watching myself from outside of myself.  The one me, looks at me incredulously and mouths, “Why don’t you practice what you preach and pull yourself out of this?”  The other me, looks at me and thinks, what a mess!  She needs to get her hair and nails done and then she would feel better!  Hmpf!  Then there is the real me, a combination of all; the cheerleader, the vain, and the artistic one. This me knows that I still have some huge hurdles to get through still.  I need to prepare myself for them by sheer will power.

I need to do this on my own.  It is what I’m accustomed to and what I prefer.  I find resources along the way to help me.  What I hate is this.  People who love me want to help me.  They think that if I lean on them that somehow, they will be able to alleviate the things I feel.  It doesn’t work that way with me.  They don’t seem to understand, although they should by now, my methods of dealing with pain, be it emotional or physical.  It’s a private ordeal that I go through and no amount of “talking about it” to anyone; regardless of how close they are, will alleviate or ease anything.  It’s presumptuous of them to think that they can do anything about it at all.

I understand that what I’ve just written is rather cruel.  I would think that by now those that love me, already know that I am like a person who has just stubbed their toe.  I don’t want someone running over and touching me and saying, “Are you okay?  Can I help?  Where does it hurt?”  You know how it is?  You want to slap their hands away and let the pain ease off on its own before you can even begin to speak or interact with someone.

All of this doesn’t sound like me.  Does it?  It does, if you knew the painful young life I led, but that’s for another book.

 

WORD TO SELF:

Misery in your world does not love company.  Misery is a private issue for you and it hurts like hell to write it down on paper for all the world to see.  But you’ve done it!  I’m proud of you.

Emotional Misery: 

There are some people in your life who think you besiege yourself with living in past and just keep harping on it.  To some point, this is true but only with the people who are a part of that story.  A resolution that satisfies you must be settled and until it is, you will continue to take the steps needed to resolve some issues.  You will not allow people to ride around on their mighty self-righteous horses stomping you down into the ground.  You continue to stand in the way of their steeds until they are ready to life you up on the horse with them, as is your due.

I caution you.  You know that saying about bringing horses to water but you can’t make them drink.  This might be the case for you.  I know.  This is the crux of your misery.  It is up to you to decide when these people are no longer a viable part of your present life.  You have to let them go.  You can’t force people who are convinced they are right, that they are wrong.  They are unyielding to you.  Why do you yield to them and give them this power over you to make yourself miserable?  Think about it.

Physical Miseries: 

You know that you have this uncanny ability to spring back from physical injury.  You’ve had several surgeries already and its only April.  Now you see another huge one looming ahead.  Face it!  You’re afraid of this one.  You think that you’re not strong enough to get through it because you are already so weakened by various hospital stays this year, right?  This is true.  You may die?  This is true.  You may die anyway from some other ridiculous thing that comes your way even prior to surgery, right?  We all die.  In the face of reality, if you can accept the reality of what may or may not happen, it’s no longer something to fret about.  Take it step by step and prepare for either case.  You get through it or you don’t. 

There are things to be done if you don’t.  Do them.  Remember your “5-minutes At A Time Philosophy”?

Practice it.  You’ve let the ball drop in your panic.

Call Me A Jerk

Hello my dear friends,

Today and the previous two days my myoclonic jerks and/or dystonia have been acting up.  Just call me a jerk.

UnknownI’ve been so spasmodic that my husband’s face was creased with worry.  He demanded that I go back to bed.  It was a good thing to do.  I was slipping and sliding in my chair because I could not control the jerks that propelled me forward inch by inch towards the end of the chair, and eventually, I would be on the floor writhing in agony.

You see, I also have a form of Dystonia.  I forget which one my Neurologist told me, but he rattled it off on my last visit.  He said, “You know that you have?????? dystonia, don’t you?”  I was surprised.  He said, “not only do you have MS but you have a secondary disease of ??? dystonia.”  I stared at him looking dumb.  I replied finally, “Great, just great.”  I knew I had myoclonic jerks, but I didn’t know that I had a second disease.

All of what is happening to me these days is because of stress.  My quality of life is a daunting challenge and I have to fight every day for some form of normalcy.  I mean, my kind of normalcy, which we all know is also challenging.

The cause of all this stress is my upcoming surgery on Thursday.  My surgery is unrelated to Multiple Sclerosis or Dystonia.  This surgery will be attended by two Doctors and will take 3-5 hours.  I have good reason to be concerned which I won’t go into here.

slideshow_1259634_131408-clocksI have to focus on my 5-minutes at a time.  If I didn’t, I would be a mess right now.  However, the stress is still there even if you have a plastered smile on your face and I’m good at wearing a smile despite everything in my life.  Surprisingly, it works in that once you have a smile on your face, although it is “put on” in the morning, you find yourself living that smile.

My take on all this:

Stress is not always evident by your physical nature, however; it finds it way to the surface psychologically of physically in due course.  When it becomes evident to you and others by your body’s reactions to every day occurrences, then it’s time to figure out what may be causing that stress.  Once you know what it is then you can find a way to deal with it.  When you can’t find a way to deal with it, take your day in small increments and handle it that way.

I sit here hoping to hear your prayers on Thursday with a smile on my face taking my life 5 minutes at a time.  Sure, I’m still jerking around all over the place but that can’t be helped.  There is no way to take away the underlying fear of surgery.

I will happily jerk my way until Thursday at which point I will probably succumb to tears.  Meanwhile, I am as ever, a jerk.

About Choices

cupcakeIt’s birthday time!  Two of my grown children have birthdays this month.  Although they are years apart, their birthdays fall just two days apart.  I love my children, however there is a part of me that is resentful of complete lack of communication with me.  Then when they do, I wonder when they will get to the point of what they want or need from me.

Isn’t this terrible of me?  No, not really now that I think about it. They have trained me well.  On the other hand, I have trained them well.

What is it about boys or at least my boys, who make choices based on their own needs and not on others?  Where have I gone wrong?  There is an excuse for one, but there isn’t one for the other. Then again, it is all about choices, so there isn’t an excuse for either of them.

No, I refuse to give them their sex as an excuse.  I know of loving sons to their mothers.  Don’t get me wrong.  I’m not saying they don’t love me, but they are not loving towards me, at least not very often.  Yet, when we do get together and talk, it’s a wonderful conversation on both ends of the telephone wires.  We can’t get enough of each other and the conversation lasts for a long time.  It’s difficult to say good bye.  “You hang up.”

“No, you hang up first.”

I’m going back and forth here.  I blame them, I don’t blame them.  I blame me, I don’t blame me.  Is there any blame at all?

It’s about the givers and the takers, I think.  I’m definitely a giver.  My kids are takers, and yet–sometimes (rarely) they are givers.  I know that they are givers in their own little worlds.  In their circle of friends or family, they are definitely givers.  They are me personified.

But what about that saying, “What goes around comes around,”?  Why hasn’t it come around?  Are children the exception?

I know this is a quirky article, but I’m a bit tired.  Scratch that.  I’m very tired.  It’s been a difficult week and more difficult weeks are headed my way.  I feel like running to the grocery store to put in supplies to weather the storm that lies ahead.

Stress and Multiple Sclerosis are not good bed companions.  They are not even good commuters on the train companions.  Stress tips the balance is a different direction other than ours. Symptoms that were quiet rear their ugly heads.  You try to squelch them but even if I stood upside down in a yoga position day in and day out, ugly symptoms will just push me over until I fall flat on my face from that position.

I was a nonbeliever that stress could impact illness.  Time after time, I’ve been proven wrong.  Even good stress is bad stress for people with MS (Multiple Sclerosis).  Planning happy events is stressful.  So good and bad stress all amounts to the same thing for us.  We get ill.

Now here is another thing.  First of all, we are ill.  How does one become more ill than ill?  Sick is sick right?  Nope, you can get sicker.  You go from using a cane or a walker, to having to use your wheelchair.  I’ve had to do that this week.

The kicker is this.  You have a disease that makes you unwell.  Then you get other physical problems that no one in their right mind would want and you not only have to deal with all that entails but you also have to deal with the stress of it all.  So it’s like this snowball that is rolling down a hill and getting larger by the foot.  You’re sick, then you get sick, then you get sicker because the stress of being sick and then sicker brings it up several other notches.  What a mess!

What about these boys of mine?  It’s all about choices.  No one is to blame.  Unfortunately, the choice they make right now is something they may regret later on.  I’ve already told them this but this isn’t something you can tell someone.  This is something they have to experience for themselves and of course, it’s too late.

Sigh….

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