MS Life

If you are new to this blog, please read from the bottom up so that it will make sense to you.  This is the latest blog, not the earliest.

Another week bites the dust.  Another week bites me. 

Usually when I get on here, I write about the positives of being disabled.  Yes, there are positives.  It’s a matter of like I always say, “putting one foot in front of the other”.  There is another side to that coin which I don’t write about very often and that ‘s where you put one foot behind the other, make a pivot turn, and walk away.  You hide and lick your wounds and can’t see a way to move forward.  What I say to you is that this is good!  Confused? 

Sometimes it is necessary to go backwards in order to move forward.  Pretend you are an artist and you’re painting on a canvas that is in front of you on the table.  You try and try but you’re not getting the result you want.  Then you stop and walk away to do an errand or whatever.  When you return, as you enter the room, you can see the painting on the table.  From this distance you can tell what is wrong about the painting!  That is why many artists use very long brushes to paint.  They need a better perspective and being too close to the canvas is detrimental to the outcome of the painting.

Anyway, that’s how it’s been this week for me.  I’ve had to step back.

(I’m pausing here to read back over my last couple of blogs because I have a tendency to repeat myself.  Good time to get yourself a cup of coffee.  BRB)

Okay, I’m back.  Well like I said above, right now I’m hiding and licking my wounds.  The reason why is the pain I’ve been experiencing for over a month now.  It’s very confusing to me.  You see I have a constant headache but not a headache in the usual sense of the word.  More like a head pain that sometimes feels like a headache.  My neck is not stiff, but it is very painful.  Everytime I move my head, I feel pain.  I’m also very aware of my back up near the cervical spine.  It’s a difficult feeling to describe.  It almost feels like it did when I returned home from surgery on my spine.  You feel the numbness and the pain if someone pats you on the back.  Sometimes it feels like it’s burning or cold.  Other times it feels like a pulling sensation.  In either case, you are very much aware of your spine.

Is this MS?  Is this a repeat of the Arnold Chiari Malformation that I had surgery for before? 

I was searching for some answers last night.  I wish I had saved the websites that I had visited for you because I found some interesting stuff.  Did you know that Arnold Chiari Malformation and MS are sometimes misdiagnosed one for the other?  Having a Chiari malformation, the base of your brain is lying too low and is preventing spinal fluid from flowing around your brain.  That is what causess the headaches and a myriad of other symptoms.  Why?  The malformation is at the BASE of the brain, the cerebellar tonsils are low lying, as my recent MRI said.

The cerebellum of the brain controls so many things!  So in actuality, even though you have MS, perhaps you have ACM (Arnold Chiari Malformation) and not MS!  That stunned me.  The idea that maybe I don’t have MS blew my brains out.  Then I studied article after article and sat back and started thinking, which is worse?  The ACM or MS.  You need to read up on both.  There is just too much information for this blog.  I will post some links at the bottom of this page.

To think that I’ve been on the ABC drugs all these years for treatment of possibly the wrong thing, also unerved me.  What if what I have is ACM?  What if the old neurologist was on the right track finally in going over my file with a fine toothe comb.  Well now see, this makes me all the more angry with him, if this is the case; because he should have done this in the beginning not  seven years of being his patient; and then the hell of all those treatments with injections.  There is something very wrong with this whole picture.

Quite frankly, I don’t know what to think.  Doctors hate it when we research things online because we jump to all sorts of conclusions.  That’s true.  But what if?

There is something else I wanted to share with you that a friend share with me.  YOU MUST READ THIS ARTICLE!  http://en.wikipedia.org/wiki/CCSVI.  Here is part of the first paragraph;

Chronic cerebro-spinal venous insufficiency (CCSVI) is a term used to describe compromised flow of blood in the veins draining the central nervous system. It has been hypothesized to play a role in the cause of multiple sclerosis (MS).^[1][2] This hypothesis was first put forth by Paolo Zamboni in 2008.^[3][4] An endovascular intervention for the syndrome has been attempted however further research is required to determine if the benefits outweigh the risks of the procedure.

It is my personal opinion that this Dr. Zamboni may be on the right track!  I am trying to locate an email for him as I would like to see if I can be seen by him.  Can you imagine a cure for MS!

My husband came across an article maybe 6 months ago about vascular insufficiency and it’s possible tie-in to MS.  We wondered about it because I have lymphedema which is caused by vascular insufficiency.  So please check this out.  It might be something you are not aware of.  We need to bring it to the forefront here in the United States.  The only places that will do this procedure is in Italy or in Romania.

Anyway, I hope I’ve given you some helpful information today.  I see my new neurologist on Tuesday and I will keep you posted.

My status today and last week?  Quite ill and in a lot of pain.

Here is to your having pain-free days and as always, please sign my guest book.

Hugs

Magdalena

If you are new to this blog, please read from the bottom up so that it will make sense to you.  This is the latest blog, not the earliest.

I know that my last post was rather off the beaten track and a bit sad, but life goes on and like a moving floor at the airport; if you just stand there, you will eventually get to the end and must step off.  You have to put one foot in front of the other and get out of people’s way who are trying to catch their flight to their future plans.   I don’t know where I’m going, so I can at least move over to the side and then decide where to go next.  At least I stepped forward and to the side.  It’s better than just standing and have everyone run over you or push you away.

Those of you who comment on my blog, and either tell me about it or email me, please write your comments in the blog.  I need your reactions made public and it encourages others to comment.  Thank you.

These days with MS have been pretty much the same.  I get no better or worse.  My husband says that I’m a lot worse from a year ago.  It’s so gradual a change for me, that I don’t notice it but others do, particularly those who haven’t seen me in awhile.

Let’s talk about stress and MS.  We all know that stress can inadvertently trigger a relapse in MS patients, and it also can heighten symptoms with those of the other types of MS.  What is the solution?  We all have stress!  Every single one of us.  Those of you who think you are not under stress actually are.  Did you know that there is good stress?  Either one can heighten the symptoms or in fact; exacerbate the symptoms.

You don’t think you’re under stress but you are.  My neurologist asks me if I’m under any stress quite often.  I always tell him, “of course I am.  So is everyone else in the world including you.”  

I personally don’t know how to control the effects of stresses in my life.  I am a prisoner to my stress.  There are coping strategies all over the web, but my body will do what it wants.  Read up on the subject and see if you can find ways of downplaying it’s effects on you.  As for myself, I am highly volatile when under deep stress and there is no way I can control what happens thereafter, or perhaps I just don’t want to control it.  Sometimes I feel it’s just better to let it out and allow it to run it’s course.  By doing this, I feel better afterwards.  Unfortunately, there can be dire consequences to allowing this to happen besides the medical issues it incurs.  There are also personal struggles or relationships that can be tragically injured or changed as a direct result of how you react to your stress.  I know, I’ve been there.

I’ve recently been under a great deal of stress and continue to be under it.  I have made mistakes with people and my body is reacting to it.

The one stress that is up most in my mind right now is that I recently underwent some MRI’s for my cervical and thoracic spine and found some anomalies.  No lesions there but I also have an Arnold Chiari Malformation (where the brain slips into the brain stem disallowing spinal fluid to flow around the brain), that was repaired several years back.  Now it’s looking like it’s slipping back down again. 

I had to undergo two major surgeries to repair this.  I don’t want to have to go through that again because it took over a year before I felt just a little better.  Some of the symptoms are returning and new symptoms as well.  I have a great deal of pain to endure.  I will provide links on the bottom of this blog for you to research.

I plod through my days having to deal with depression, the Arnold Chiari symptoms and the MS symptoms.  I should be on the ceiling crawling the walls up there.  I’m not.  I just keep placing one foot in front of the other and do the best I can.

Listen folks.  I can’t say it enough.  Either you can give in to it or you can fight it.  I choose the latter.  It’s not an easy fight and sometimes other people get hurt through the process; but these people need to understand that I’m fighting a battle here.  They will only get me back if I fight and yes; some people get hurt along the way.  If I am to continue allowing myself the right to call myself “Enabled by my Disability”, I have to fight this battle.  If I die trying, I die a winner.

So right now, I’m worried.  I’m under good and bad stress.  I’m excited about a new grandchild.  I’m excited about my son and new daughter-in-law (they’re pregnant) coming over for a visit next month.  I’m worried about my youngest child.  I’m sad about not allowing myself to drive very long distances which has forced me to quit my teaching.  I still can’t get the damn Motif (my piano keyboard) to work right.  I have musical deadlines to meet, people to help, on Indaba, my music forum.  The weeds in my garden are driving me crazy.  Should I sell the house or not to get a rancher?  Should I renovate and stay put and where will the money come from?  I want an adaptive vehicle so badly.  I’ve checked into light titanium wheelchairs that you can fold and put into a car, but again I ask; where will the money come from?

So you see there is good stress and bad stress.  The one uppermost in my mind is the pain in my head and neck.  I see the new neurologist next week.  We’ll see what he has to say.

What can you do?  What can I do?  We move on.  We place one foot in front of the other and deal with things as they happen.  If you sit and think about it all, well then start building a box and crawl into it because it will overwhelm you.  Just typing about all the things above was enough to set my palms into a sweat.  So try and forget about the overall picture.  Just take it one step at a time.  Happily for me, I will get some answers next week with my #1 problem.

I promise you I do get swept under often with letting all of the issues hit me at once.  I’m like you, no better.  But then I have to talk to myself and get it under control again so that I can move on.

Move on.

Here are the links for you:

http://kidshealth.org/teen/your_mind/emotions/stress.html  This is an article on both stressors.

http://www.ninds.nih.gov/disorders/chiari/chiari.htm

Do you know the best way to hurt someone?  I do.  It has happened to me so many times that I can’t begin to count them.

I led a life of being ignored when I was growing up.  I grew up in an orphanage from the age of three years old until seventeen and a few months.  While I lived there, I was one of about 2,000 children and vying for attention never got you anywhere there.  There were overworked nuns with whole groups of us to manage, and even then; if you got their attention, it was because you did something wrong and you were punished, most often; cruelly.

Even among the children there, if you were different, you were ignored.  I definitely fit the category.  I was always sickly and was not into sports, boys, or casual chit chatting.  I wasn’t into games or make believe with dolls or any of those things.  I didn’t own a doll in either case.

I walked around day in and day out performing my chores and getting punished for not having done them well enough.  I was often used as a scapegoat when someone got into trouble because I was handy and because the other children knew I would never defend myself.  I was too afraid to do so.  I lived in fear and preferred to disappear into the wallpaper of any room I was in.  I didn’t want to stand out any longer.  I didn’t want attention any longer because I was growing up and the hunger and desire for being seen, touched, hugged and perhaps loved even a little bit, began to fade away.

Unfortunately, I was gifted and I was pretty.  This brought about a new kind of attention that was not desired by me from the other girls.  They hated me.  My teen years were terrifying and obscurity would have been a blessed relief.  However; I was drawn into the world of drama on stage, dancing on stage, playing in the band, playing the piano and guitar.  The attention I no longer wanted was given to me when I performed and for those glorious moments while I was on stage, heaven had descended upon me and the whole world was my audience as I danced and sang around the halls of heaven.  The moment the curtain came down, I ran from notoriety into obscurity as quickly as I could, but often not fast enough.  Caught, like a deer in headlights, I succumbed to the new and ingenious ways of punishing me for being different from the rest of the crowd.

During high school I was torn between wanting friends and afraid of having friends.  I went full circle again in the latter part of my high school years with longing for attention again.  Hormones had kicked in late for me.  So I sat with my nose in a book watching out of the corner of my eyes all the fun and interaction going on with the girls in my cottage, hoping no one would pay me any mind, but then hoping someone would bring me into the conversation.

I saw boys at last.  Boys saw that I was looking.  They began giving me all sorts of attention.  This brought me a whole new set of problems because someone always had a crush on a boy who had a crush on me.  I can remember having a brush slammed into my face one day because one girl was so angry that the boy she liked was only interested in the mystery of the quiet girl that I was who flitted across the stage in plays or ballet.  So now the girls hated me for a different reason entirely.  I was now competition.  Therefore, once again I sought obscurity in order to deflect the wrong attention coming from them or boys.

Finally, a new girl came.  She was beautiful and she sang like an angel.  She too was different but somehow she was able to ride the fence where she made friends and could sing in the choir and on stage.  I admired her and I hated her because she was better than me.  For some reason she sought my companionship.  Because I was torn between admiration and hate, what won me over was the need for attention.  We became friends.  She was a year older than me and a senior while I was still a junior.

She taught me things about myself and about a bigger world outside the orphanage’s brick walls.  She taught me about men, not boys.  This led to another slew of problems with climbing over walls for dates etc.  I discovered a new world through her, but it was a dark world.  All the things I enjoyed doing fell by the wayside as I was at her beck and call.   But I craved the world she offered where I was treated as a desired treat, pure and virgin.  I quickly lost that title of being pure and virgin and I succumbed to the attention of men.

I’m going to end this story here.  It belongs in my book anyway and yes, it has nothing to do with Multiple Sclerosis; yet in a way it does. 

As a shut-in for the most part, I’m back to where I began.  Lonely and desolate and leading a life where if you don’t understand the disease, you are alone with the disease as your only companion.  I no longer try to explain it to anyone except when asked a direct question pertinent to drugs, therapies, symptoms, etc.  I don’t bother explaining my life because for the most part, people only see the outside skin and not  the very frail and fraying skin within that harbors my soul.

Having a disease oftentimes places you back into the world I described above.  You go through all these stages where for one reason or another, eventually people will begin to place you into obscurity.  You don’t have to go there yourself.  You see, if they don’t understand the disease and even if they do, it’s not a part of their world!  They don’t want to be dragged down by my world.  I have little to say to them because my world is diametrically opposite to theirs.  They don’t want to deal with it.  They listen, nod their heads, and you can literally see it dribbling out of the other ear.  So I don’t try anymore.  I don’t bother.  It is what it is and I’m meant to come full circle to continue the path I began.

I know that I am thought of with kind wishes, but I’m no longer a part of a viable world that belongs to them.  I now belong to a world of my own making.  It is a creative world filled with ingenuous ways of killing time, usually with music, arts or crafts.  I was ignored again until—–

I made a friend again.  That person was a friend who filled my life with laughter and unexpected surprises.  That person encouraged my endeavors in music and in writing.  That friend also had disabilities and understood my world until——

I lost that friend.  I am back to my world of obscurity.  The one I was born into.  I have slipped away from active projects and have built up the walls with virtual bricks from the old orphanage to protect myself and my heart.  I haven’t the energy or the inclination to try any longer to belong in a world that I have to fight to be a part of.  The struggle overwhelms me and drags me down to a very dark place.  I can’t allow this to happen.

So I’m taking my constant companion, MS, and going behind the brick walls yet again, but this time I’m choosing to be there.  I’ve done all that I can and my hands and heart are emptied.  I’ve quit teaching, I’ve quit my musical groups and I may even quit the site altogether where my musical groups were.

The best way to punish a person is to ignore them.  It is an excruciatingly painful experience particularly when it comes from someone you believed loved you.

I bid them a fond farewell as I quit them as well.

Note:  If you’re new to the thread, please read the oldest to the newest blogs to get a real feel of the blog.  The newest is on top so start at the bottom.

This week started with a bang.  I believe I told you that I’m going to see a new neurologist.  Meanwhile, I do have a script from my regular neurologist for an MRI of the cervical and thoracic spine to see if anything else is going on.  When making an appointment witht the new neurologist, I asked about the scripts.  They told me to go ahead and get those done and bring them in.  I thought that was a good idea.

I scheduled the MRIs.  They can’t be done at the same time.  The first one was yesterday of the cervical spine.  It was a closed MRI.  I call it the tomb where your whole body is enclosed in a tube.  These are better than the open MRI’s for accuracy, I’m told.  I don’t mind having MRIs.  I’m not claustrophobic.  My only concern is that I would have a myoclonic jerk while in there, but I was lucky.  I tried staying alert and not allow myself to drift off into a relaxed state which is when the jerks have a tendency to occur.  Everything went well until it came time for the gadolinium shot.  That’s what they put in you to show if any of the lesions are enhancing which would indicate either a new lesion or an active lesion causing trouble.

I am a terrible stick.  I have no veins that are easily accessed.  I used to have great veins, but over the years with numerous hospitalizations and what have you, they are now hiding out in various corners of my anatomy away from the offending needles.  If someone tries to catch one, it rolls away from them.  Yesterday, after three attempts to get one of those veins, the technician was about to give up when she decided she would use a very tiny needle and attack my hand instead.  That was very painful and not only that, because the needle was so small, the gadolinium just sort of slowly oozed up.  Then the vein said, “uh uh, that’s enough,” and ran away from her.  I thought, oh no, another stick.  But she went and checked with the radiologist and he felt that there was enough in me.  We speeded off to the end of the thumps and grinds of the machine and voila, I was done.

The next one is on Thursday for the thoracic spine.  The technician told me that she would forewarn them about my reluctant veins and put the best sticker person on my case.  Sheesh.  I always come out with bandages in several places when there has to be injections of one type or another or taking blood.  I drive hospitals crazy as well as office people.  If you want my honest opinion, I think they don’t tie the tourniquet tight enough.  Even the technician I had last night said that that was a difficult thing for her to learn to do.  I mean, I would rather my arm loose it’s circulation for one easy stick than to have to undergo multiple sticks each time.  So each time I go in, I tell them to tie the tourniquet tighter. 

I wonder if the lymphedema doesn’t help?  Something I should check into.  Think about it.  If my blood is being blocked in my legs, perhaps that is part of the problem!  I will have to ask my internist next time I see him.

Today is Wednesday.  I’m scheduled to see my psychiatrist this morning and finally get the right dosage or prescription for my depression, which of late, has been acting up.  Then I need to see if I can spread his visits further apart.  Unfortunately, he is not in my Blue Cross Preferred Provider list, so Blue Cross doesn’t cough up a dime.  At $250.00 a shot, he’s expensive, but I won’t give him up.  He’s great.  Then of course, tomorrow the second MRI.  So it’s a busy week with medical stuff.

I feel a sense of relief knowing I will see a new neurologist at the end of the month.  I assumed just because the present neurologist was the head of the MS department at the hospital and was leading all these studies into the therapeutic drugs, that he was the best I could have in this area.  I was wrong.  So let me reinforce my feelings about the right neurologist for you and me.

If you get a neurologist who doesn’t look at you and is typing away on a laptop while he listens to you.  Run.  Half his mind is on what you’re saying so he can get it down and the other half is on working the computer.  What you want is his full attention.

If you get a neurologist, like mine, who has an assistant who does everything for him including asking the questions on symptoms, running you through all the various tests to check your progress, dispensing the RX’s for medications and virtually doing all that the Doctor is supposed to do, RUN.  These neurologists get so accustomed to having everything done for them, that when they come in, they don’t seem to know anything about what you’re currently going through except throught he mouth of the assistant.  So when he comes in, he thinks he knows everything he needs to know already and his position on the subject is, “what can I do for you?”  That’s what he asked me each time.  Why didn’t I see this sooner?

I think I was being a snob.  I had the top neurologist in the area after all.  Who was I to question his technique?  The clincher for me where my rose-colored glasses were smacked off my face was when I went in this time to find that his assistant was on an extended Maternity leave.  This left him with a temporary assistant who didn’t do even a third of what his real assistant did, and left him to struggle with the real me.  Once in there, it was like he had never cracked open a file on me.  He as much as admitted that.  It was then he started to question me about everything that had happened since I first met him in 2004.   He kept asking me to get this or that record to him etc.  I told him he already had those, but he couldn’t find them in the chart.  I knew they were there, but if you flip through the chart as quickly as he did, he wasn’t really paying attention to what was in there.

Find a neurologist who listens, who gives you his undivided attention.  Who when you meet the next time, seems to have at least some recollection of you and your case.  Find someone genuine who seems to care and wants to help you.  Neurology is not a practice where you just take blood pressure  and order tests.  Neurology is almost like a psychologist visit.  You are there to converse with him about everything that is going on.  He needs to take the time to listen, ask questions, and provide possible solutions to your problems.

Be careful who you choose, and if you find out like me, that the neurologist you have is not good enough for you, don’t be afraid to move on until you find the right one for you.

Take care of you for me.

For the first time in my life, on Mother’s Day, I received flowers from FTD.  It was from my son and daughter-in-law.  It’s a very long story and not suited to this blog, but I can tell you, it is a momentous occassion for me.

This week has gone fairly well.  Nothing unsusual to report.  Did I tell you I quit teaching knitting?  It was a sad decision but necessary.  I just can’t drive more than a few miles at a time anymore.  I’m on too many drugs and my eyes don’t coordinate with each other very well.  I learned this a couple of weeks ago when I underwent an extensive eye exam.  You can’t take my car away from me though.  It’s is my last leash to the outside world and to my independence.  If that ever were taken away from me, I honestly couldn’t tell you what my state of mind would. be.

I learned something from the web this week regarding our disease.  I tried to find it again so that I could post the link here, but I’ve lost it.  The article was in some newsbreaking thing about MS.  If any of you find it, please let me know and I will post the link in here.

The jist of the article is that they have discovered that there is a close correlation between MS and unpredictable or inappropriate behavior.  They gave it a name, again I don’t know what name.

It was an article that talked about patients laughing at inapproriate times or for no reason whatsoever; suddenly bursting into tears; and a myriad of other spontaneous behavior at the wrong time.  Have any of you ever experienced this?  I have.  For me it has been a sudden surge of anger that is not supported by what brought on the anger if it was anything at all.  Suddenly, I feel this need to spout off and say all sorts of angry words that are equal to the occasion. 

I also laugh at inappropriate times.  This was told to me by mother-in-law a long time ago.  I ignored it but now that this article came out, I realized that maybe this started a long time ago.  It’s an interesting article and for the life of me, I wish I could find it.  I will continue to look for it.

We are trying to get a loan to remodel the first floor of our house and make it more accessible for me.  We have already received an estimate on how much it would cost us from a contractor so now we need to get together with our bank.  Ugh.  I hope they will allow us to have one, but in this day’s economy, who knows.

I’m keep this short because I am very tired and have a huge headache.

I would like to wish all ladies a Happy Mother’s Day.  It doesn’t matter if you have a child or not.  We are all mothers.  We mother all the people around us.  Have a wonderful day.

It’s Sunday and I’m sitting here trying not to fall asleep.  I keep nodding off at unexpected moments, the effects of so many drugs.

It’s been a difficult week due to doctors.  I am so sick of them.  I can tell you this.  It’s time for a new neurologist!  I’ve been seeing this one since 2004 and I’ve had enough of him.

At first I really liked him.  He heads the MS department at the hospital.  He also heads all the research programs on the ABC drugs for MS such as Avonex, Betaseron and Copaxone.  So he enrolled me when I first went to see him.  I saw him every four months and he would ask detailed questions as to my progress and talk to me about the drugs I was on; questions such as side effects etc.

I went through each drug over all this time and went off them because of side effects.  I am very sensitive to any type of innoculations.  As time passed and I tried each one of the therapies, I eventually made the decision that I wanted quality of life rather than feeling sick and tired with flu like symptoms duirng half of each week of my life.  I discontinued the therapies.

After this, I became someone whom he barely showed any interest in.  I would see him every 6 mos or so.  Those visits were very short and I barely had time to ask him any questions.  This started about two years ago when I stopped the therapies.

This last visit was the last straw.  He had to continually look through my file to try and figure out who I was and what I had tried or not tried as though I were someone he was meeting for the first time, but it wasn’t just this that took the cake.  I need a refill on one of my medications where the RX had run it’s course.  What I need was a new prescription (RX) with refills on it.  The pharmacy tried calling him numerous times, I called, David called and even my psychiatrist called because he wanted to discuss some of the drugs I was on with my neurologist.  He never returned any one of our calls.  Not only that, we never could get through to him.  We had to leave messages on many different voice mails. 

I made an appointment yesterday with my internist for other issues.  While visiting with him, I told him everything that had gone on with my neurologist.  My internist said that it was time for a new neurologist and referred me to one.  I will take him up on that one I can tell you, and he was kind enough to provide the prescription I needed.

That’s my big event for this week.

I hope you fared better.