I Smile

Something I haven’t talked about is what’s life like these days.  I’m not talking about the medical stuff here, but life!  Day-to-day life which is what the blog is all about.  I’ve been so concentrated on the pain issue that I haven’t talked about anything else.

I dare anyone to blame me for this.

Here is a weird thing.  I decided to buy a 2017 Fiat 500.  Why?  I seldom drive anywhere.  I’m heavily medicated most of the time.  I can’t see worth anything especially at night.  I don’t have deep pockets of money to spend anywhere.  You can’t haul medical equipment in the car.  The trunk is too small.  You can’t even haul passengers in the car unless they are munchkins with teeny tiny legs.  I can’t lift my right leg to get into the car.  Surprisingly, the front seat of the Fiat is higher than your average car.  So what I have do is this.  I found a leg raiser thing-a-ma-jig at a medical supply store.  It looks like a loop on a long wired handle.  You place your foot in it and pull on it with your arms.  It raises your foot up, almost high enough to the level of the Fiat.  It works well enough.

My life is spent running from one Doctor’s office to another.  It’s the highlight of my life.  I get to get dressed in something better than I normally do.  I put on a wig since my hair is shot, and some makeup.  I look okay for the day.  Lastly, I put on my smile that everyone seems to love.  As long as I’m smiling, the world thinks everything is okay with me.

I have cleaners come in every two weeks.  Will hope to move them up to every week when things get better financially.  I’m in the market for a new wheelchair that medicare approves of.    I spend a lot of time researching this.  Have you seen what’s out there?  Unbelievable!!!  One costs as high as $14,000.  Which is, of course, the one I fell in love with.  Anyone care to make a donation?

My Take On This

 All is well with the world around me as long as when they see me, I am smiling.  There is no such thing as showing a face of pain.  If you do, they compare their pain to yours!  At first, early in the disease, I tried to educate people.  I no longer have the desire to do so on a daily basis.  Hence, the reason for the book.

I’ve reached a point in my Multiple Sclerosis where things are sliding downwards and fast.  I fought wheelchairs, but now I spend my nights prowling through websites and watching videos on all that is out there, dying to get my hands on one that works.  

I watch my life changing almost daily and dramatically.  There’s nothing I can do about it.  There is only one thing to do.

I smile.  It makes the people around me feel better and believe it or not, it eventually makes me feel better.

 

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A PAIN IN THE WHAT!?

As promised, I will continue the story of the pain in my legs.

After a month of recovery, I took off my neck brace permanently.  My husband and I both noticed that my neck did not flop over to the right.  It was straighter although not completely straight.  I could not and to this day, still cannot bend my neck backwards like looking at a shooting star directly overhead.  My neck still hurts a lot.

I made an appointment with a pain management Doctor. When I got there, I was seen by his PA (physician’s assistant).  She listened to my story and I told her it was going on four months since all of this initially started.

The upper most question for her as well as to other doctors whom I’d visited was this, is this Multiple Sclerosis or a back issue?  I can’t even tell you nor does my neurologist know for sure.  Ultimately for me, my question is, who is going to help me fix this?

It was decided that I should get a steroid shot in my lower back.  It was scheduled, I went, and the result was nothing.  It was then decided that I should have an EMG (electormyelogram) test.  The result was that I had pinched nerves in L5-S1 on both sides.  L5-S1 is the location of the bone in the lower back.  They number from 1 through 5.  S1 is the next bone underneath L5.  The nerves being pinched were between L5-S1.  Don’t quote me on this explanation because I’m not sure that this is precisely correct, but you get the gist of it.

Armed with this information she scheduled another shot for me.  This is all done under light anesthesia.  You go home in a few hours.  It was scheduled, I went, and the result was a few hours of relief and then the pain returned full blast.

When I returned to see her with tears in my eyes, she was excited to hear my news.  She said that it was good and bad.  It was bad because she was sorry that the pain returned.  She was glad because having had a few hours of relief, she was sure that she had solved the problem.  It was the pinched nerves in L5-S1.  Her conclusion was that I needed another injection in the same location to see if the same result occurred or even better.  Perhaps the second shot would take, and I could get by without another shot for months.

I then asked her what would happen if the same thing happened where I had relief for only a few hours.  She then replied that I would probably need surgery.  When I asked her what type of surgery, she told me that they would go in and scrape the bones back away from the nerves.  I never heard of that procedure before.  It didn’t make me very happy.  She then scheduled my third shot.

You must realize that all of this took months to happen.  By this time, I was going on 6 to 7 months of unrelenting pain.

I had no idea what a pain management doctor did before this.  I knew one thing.  I needed help for this pain in between their poking around with their shots.   Because of the changes in New Jersey law restricting the use of narcotic drugs that could be prescribed, I would be given about seven days’ worth of a codeine medication.  This medication only eased the pain for about an hour or so and I had to wait six to eight hours before I could take another pill.

The days and nights I spent crying are too numerous to count.  I felt I looked like a zombie with dark circles under my eyes from so many sleepless nights.  I could not get into any position that was comfortable for me whether I was in bed, sitting, or standing.  I couldn’t even stand the seat of a chair touching the backs of my thighs.

Meanwhile, my general internist was someone I needed to send out to pasture.  I was unhappy with her for various reasons including the fiasco at the hospital where she decided that my medications needed to be changed around, not understanding the balance of the two year’s of work it took with my neurologist to relieve me of some of my symptoms from MS.

I had decisions to make now.

When I came out of this office visit with a date to have my third shot and a new script for that week’s drugs, I told my husband everything that was said.

He then told me that while he was in the waiting room, he and another guy who was a patient, struck up a conversation.  This man told him about seeing this doctor for two years with no pain relief in sight.  His pain was strikingly similar to mine but for some reason, surgery was never discussed for him.  My husband was too polite to ask this man why he continued to see this doctor.

Without my knowing about this, my husband had been checking out pain management doctors on the web and found out that these procedures were not FDA approved. Somehow, they were still allowed to happen.  I don’t get any of this because I’m too tired to figure out what this is all about although I seem to recall something like that, also on the internet.

My husband told me that he wanted me to cancel the surgical procedure (the shot).  I burst into tears and asked him then what am I supposed to do?  We sat in the car trying to think straight.  Should I consult with a neuro surgeon?  Should I take the path of the shot?  If I get rid of my internal med doctor, who should I see?  Should I go back and talk to my neurologist?

When I got home it was clear to me that I needed to take things one step at a time.  First of all, change my internal medicine doctor.  I decided to go back to my previous doctor.  Why did I change from him to her?  Dumb mistake on my part.  It was because while I was at the hospital on one occasion, she was my primary doctor on the ward.  My regular internist did not practice at this hospital.  Don’t get me wrong, the impression that I got from her still stands today.  She is a sweet and caring doctor.  She was so solicitous that I wanted to be under her care.  I exchanged an excellent doctor who saw the whole picture to a doctor whose personality I liked.  Once again, dumb mistake.  I took care of that right away and scheduled to see my previous doctor.

I’m so sorry that this is so long winded but if I don’t get this finished in one sitting, I’m afraid It won’t get done.

When I visited my doctor, we picked up as though I had not been away for over a year.  When he asked me how things were, I told him the entire story. I could see he was agitated but he waited for me to finish.

He looked at me and told me, “You get away from those doctors as fast as you can.  What they did was unconscionable.”  He was red in the face as I looked at him with a question on my face.  He knew I wanted to know what he meant by, “what they did”.

He said that to go in the first time and give me a shot somewhere in the vicinity where they thought my pain was coming from without their own imaging studies such as a CAT scan, was unconscionable.  He then said that to give me a second shot with still no studies done on me was also wrong.  Then he said to give me a shot the third time to prove to themselves that it was in the right area was “bleep”.

He was very upset and once again I was a puddle of tears.  He then said that I was probably being used for billable hours.  He asked if I ever met this doctor.  I told him only once, on the surgical floor of their unit.  In three almost four months, I never had a visit with him in the office, it was always the PA .   He asked where I had these procedures done.  I told him it was in the same office building on a different floor.  He laughed and nodded at that.

He increased my gabapentin to 2400 mg which is the max amount, to see if that would help.  I called him in a few days and told him I was in agony.  He then added tramadol and Cymbalta which is an antidepressant but also works on chronic pain.  Between all these drugs my pain has gone from about a 10+ to an 8+.  It often rises as the day wears on and I then add Tylenol Extra Strength to the mix.

Ultimately, I’m a miserable and sad girl going on nine months of this.

My neurologist brought up medicinal marijuana and I’m signed up for that although I haven’t received my card yet.  He thought I could use it anyway prior to all this leg stuff going on so it’s an opportune time to try it.

 

My Take on This

It’s funny how people seem to know that something is wrong with you, outside of the obvious MS thing.  Strangers will come up to me and ask me if I’m okay or if I need any help.  There must be something that I show on my face that I’m unaware of.

Most of the time, I feel that I give a good outward appearance of being pain free from the general population.  Those who are close to me, know.  They can tell.

My dearest friend made a comment about not knowing how I do it.  How I am able to make others around me happy while I am under this boulder sitting on top of me.  I said to her, “what is the point of making everyone around me feel sorry for me.  It’s the last thing I want or need.”

If I’m out, I want to be out and try and get some sort of quality living done.  Otherwise, it would probably be best if I stay at home.  I don’t want to live in the world of “me”.  I don’t want people around me worrying all the time.  I can’t imagine living my life in the world of “me” instead of the world at large.

I don’t want to draw people into my world.  It’s not a very pleasant place considering everything we all go through with having Multiple Sclerosis.  I know you understand this.  Instead, I want to educate people.  I want them to see that having a disabling disease is not the end of the world.  Life goes on, if you want it to.

It’s a choice we all have to make.  Do we draw away and become reclusive?  Or worst yet, do we embroil everyone around us into our life which is oftentimes miserable?  Why?  Why would we want to do that?

It’s not my personality.  I don’t feel I have angel wings although my friend thinks I do.  I don’t want to some day leave this world with people eulogizing me as the woman who suffered so much.  I want to be remembered as a decent human being who cared about others.

I throw up in here.  On my pages of written words I tell it all good and bad.  You witness my life as it truly is.

I will keep you abreast of what other decisions I make regarding my pain.  I’m glad this is all said and done.

What Is This Pain?

 

My apologies.  It has been far too long since I’ve last written to you.  Despite the agony and pain that I have been going through you, of all people, deserve the right to know what my progress is and what is happening.  This is, after all and in a way, a letter to you.  I had promised to keep you abreast on all that happens in my life as a person with MS (Multiple Sclerosis).  Instead, I crawled into myself and lay there whimpering for weeks at a time.

You have a right to come down on the floor with me and whimper along.  You don’t have a right to try and pull me up.  My letters to you are filled with the detailed aspects of my life which can oftentimes be mortifying, humorous, or sad.  You know that I always try and find something positive about it all.  There are times, however; like these past few weeks, that I collapse on the floor and whimper.  I have earned that right and that is why I say, you don’t have the right to try and pull me up.

I need to lay there on the floor in a puddle and give in to the pain and sadness of a person with Multiple Sclerosis.   You do too.  I don’t write because I want to pull you up off the floor, but because I want you to know that I’m here.  What have I done instead?  Disappeared.

For this I offer you my sincerest apologies. I should have let you in on what is happening.

Let’s begin.  I believe you already know about the pain in my legs.  I have not taken at look at my previous posts.  I think it’s okay to refresh yours and my memory on it all.  You know how it is with us and memory.

About seven months ago I started to feel a pain mostly in my left leg.  It almost felt like a person who experiences a “Charley Horse” during the night.  If this happens, the following day you feel a very sore pain in the leg.  Take that pain and multiply it by ten and you have what I felt like.

I hobbled around and soon I started to feel that same pain in my right leg but to a lesser degree.  The pain began in my calves and then moved up to include my thighs.  After a month or so of this, I landed up going to emergency and nearly screaming at people to help put me out of my misery.  I was admitted on heavy doses of morphine.

What amazed me is how little general physicians know about MS!  In this day and age?!  Come on!

They pulled up a recent MRI that my neurologist ordered because he felt the lesions in my spine were wielding their swords of destruction on my already deteriorating spine due to age etc.  They didn’t see anything to exciting there on my lumbar spine but saw all sorts of problems in my cervical spine.  Lumbar being the lower back and cervical meaning the neck or upper back.

It was decided that I had lower back pains by the hospital neurologist and he ordered a heating pad, which they brought promptly.

I couldn’t believe it.  This neurologist, who had hearing problems, decided that I should consult with a spine surgeon about my neck and use a heating pad for the pain in my legs.  He also wanted me to consult with a pain management Doctor.

When I was released after a couple of days, I went to my computer and started reading about the symptoms that could arise from problems with neck.  In several articles I did read that cervical neck problems could lead to symptoms in the leg.  I was hopeful.

When I went to the surgeon, he asked me a few questions about symptoms in my hands or arms. I told him about the tingling I felt and that I couldn’t seem to hold onto anything.  Everything always fell to the floor.  However, I went on to explain to him the symptoms in my legs where there also was intense and painful tingling along with the excruciating pain.  He reiterated that the surgery in my neck would not take away the pain in my legs.  The hope that I carried with me in the office fell heavily to the floor.  I stared at it as he went on to explain that he would take out two discs and replace them with a tube.

I went into surgery wondering if I should be having this surgery.  I wasn’t feeling any pain in my neck except the annoying crunching sounds I would hear when I turned my neck. Still a nagging residual of hope remained that all the articles I read that said the neck could be related to the legs might possibly be true.  Perhaps the Doctor was wrong.

When I woke up in the recovery room, I moved my legs.  No pain!  I slept a lot in my room, but every time I woke up, I would jiggle my legs.  No pain!  No tingling!

The following day I was still without pain in my legs but now I had to deal with the pain of recovery for my neck.  I sat in my neck brace and excitedly told my husband that I had no pain after 24 hours of getting out of surgery.

When I woke up the second day, I felt a slight twinge in my leg now and then.  I ignored it thinking that perhaps it was some sort of residual pain.  I stayed in the hospital four days and was released home having to wear a neck brace for at least two weeks.

For the next couple of days at home, I still felt these occasional twinges of pain.  For the most part, I was ecstatic but worried.  My husband was happy.

I will continue this story on the next blog.

A Pain in the Neck

I’m back!  I’ve been back for a week or so shuffling my way around the house with a neck brace on.

It wasn’t a difficult surgery.  The pain from it is about what you would expect after having a surgery of any kind.  There is pain, but not something that some pain pills won’t put a dent into it.

What are the results thus far?

When I first got out of surgery that first day, I thought that….whoopee, my legs don’t feel pain!  They didn’t.  I couldn’t believe it.  Gradually, as the second day wore on, I began to feel pain in my legs.  I shrieked inside my head, I begged inside there but to no avail.  That stupid pain was on it’s way back and there wasn’t anything I could do about it.

Why did I not feel pain at first?  I don’t know.  I haven’t had my follow up visit with my doctor.

For a few days after my surgery, I felt the crawling onset of pain build up in my legs. It was progressively worse towards evening.

Although having surgery in my neck or cervical spine, my greatest concern was the pain in my legs and not in my neck. I was so hoping that I would be like the research I read prior to surgery where people had been helped with the pain in their legs
after having cervical surgery. That did not seem to be the case for me.

I sat in pain in both areas, legs and neck, and thought about my future days with Multiple Sclerosis. Was the pain in my legs neuropathy and would I have to incorporate living with that added pain in my life? MS was difficult enough to contend with as
it was. Why suffer the pain of a new neuropthy? What more lay ahead in living with this disease that I had not already encountered?

My husband came over to visit me on the third day. Everything he said irked me. I’m normally not this way but that day I could not contend with the mundane tidbits of everyday life at home that my husband told me thinking it would cheer me up. Why in
the world would telling me about home make me feel any better when what I wanted most was to go home, crawl into bed and cry?

You can’t blame him. He did not know about the screaming and yelling going on in my head, like a street fight brawl. He innocently sat there, made a comment, then get quiet waiting for some sort of response from me, as though I was delighted with what he told me. After repeated attempts at trying to cheer me up this way, he finally got the hint that this was not working.

Today, I’m a bit more cheerful despite the pain in both my legs and neck. Being home helps. Surrounding myself with the ability to do the things I know and love also helps. I haven’t done anything constructive but the tools are all available to me should I once again have the desire to think outside of myself.

 

My Take On This:
Being in this tunnel of negative thoughts is something I avoid at all cost. Sometimes it can’t be helped. I’m human and when in pain, even the best of us succumb to laying down in some dark corner of our minds and hearts, beating our hands and feet
like a child having a tantrum.

I believe I’m crawling out of there and will once again pursue the answers to my questions. What are they?

1. Is the pain in my legs a neuropathy? If so, what do I do about it?
2. Can this pain in my legs be resolved with the EMG test I spoke about in my earlier blog, where the nerves that are sending
these strong pain signals to my brain, be isolated and blocked?
3. Why did I initially feel an improvement and to be quite honest, there is still a bit of improvement?

In ending, my dear friends, this has been a struggle and continues to cause me some confusion. Spring is coming and I want to feel good for it, at least as well as I can feel despite having Multiple Sclerosis.

Back to the drawing board, literally. I feel like art work today. That’s a good sign

Then What?

clock tickingThe night spreads its blanket over the house and the dogs have taken their places for a night’s sleep.  My husband has gone upstairs to bed.  All feels settled down and calm.  I love this feeling where I am with my man in the moon secluded while the stars twinkle around us.

I am watching the time on my computer.  Nothing to eat after midnight.  I am worried and more than a little scared.  With each tick of the clock I am drawing closer to the fact that tomorrow I will undergo yet another surgery.  This time it is for removal of 4 discs in my neck.

I am impinged.  Meaning my cervical spine is being compressed by offensive discs.  They intend to cut my neck in the front, draw aside my esophagus and anything else in the way, then uncover my spine.  The discs will be removed and then a tube will be placed where the discs once lived.  All will be well according to the surgeon’s standard, but will it?

It’s been nearly four months of agonizing pain.  Through the dawning of each day and the setting of the sun, I have lived with this pain, unrelenting and worsening as the days passed, I suffered mostly in silence.  However, there have been many days and late nights where I have succumbed to loudly screaming and giving in to the waves of tears that I have held back.

I’ve taken pain pills and waited for the wash of not caring so much about the pain.  The pain pills cut into the pain but does not take it away.

Will this surgery help my legs even though the cervical spine mostly controls the upper body?  Will I be freed from this unrelenting and excruciating pain?  Will I be able to walk with my unstable MS gait but be free of pain?  Will I not care about finding a way to sit or lay in bed where I can find some relief?   Will the pain of a surgery that takes 3-4 hours give way and give me back my freedom of knowing what it feels like to have little pain in my legs?

I have a million thoughts running through my head.  If this doesn’t work then what, I asked my MS neurologist.  He shrugged and told me to work with my pain management doctors.  I looked at him and burst into tears.  I can’t take this anymore.

I will have an EMG exam following the surgery and when I’m feeling up to it to try and isolate what nerve or nerves are being affected.  Perhaps I won’t need this painful test?

Then what?

My Take on This

There is no take on this.  It is what it is.  I can only wait and watch the clock ticking.  I have no delusion or faith that this will work.  Hope for the best?   I can’t.  I’m too tired to even try.

The clock ticks away.  I sit here with the man in the moon waiting for then what?

Get the F’ Out of My House!

It was such sunny and bright day yesterday, as I stood at the doorway of the back door watching m puppies at play.  I decided to get dressed while they were out romping around in the hint of spring weather.

I painfully made my way to the bedroom with my constant companions, pain and my walker.  I stood before the open dresser drawer trying to decide what to wear.  It was easy, most of the time because predominantly, in my drawer were black pants.  Today, however; I felt like wearing something different.  I chose a pair of pants the color of coffee with cream.  I then chose a red  top.

I went here and there, picking up things and setting the rooms aright.  My cleaning service ladies should be arriving soon.  It’s funny how one does this just before the before the cleaning people come.

While doing this, I felt my energy slowly slipping away as though my efforts were like attempting to start a car that wouldn’t start.  You turn the ignition and the feeble sound of the car battery lets you know that if you don’t start it soon, you won’t be able to start t at all.

Finally, I made it to the kitchen and stood there looking around.  I could see some things to be set aright, but they seemed daunting to me, as though moving some dirty dishes from the counter to the dish washer would succeed in only grinding the engine of the car (my body) to a screeching halt.

I gratefully let the cleaning ladies in shortly thereafter and slumped in my chair in front of the computer.  What I really wanted to do was get undressed and crawl back into bed.

I have very cheerful cleaning ladies and the loud talk, music and the repeated, “How are you Miss Maggie?” was sweet but just too much both at the same time.  I couldn’t wait for them to leave.

While I dawdled at the computer, I mean who could do anything constructive with all the noise here, I realized I needed to pee.  I could easily make my way to the bathroom and chase the ladies in there out, which I’ve done before.  I stood up about to do that very thing when I felt it let go.  There I was standing by my chair peeing (luckily, I had protection on) and trying to smile at the cleaning lady that just popped into the room.  “Is there anything I can do for you Miss Maggie?”  I smiled and said,

“No, I’m okay.”  I quickly turned around and sat back in my chair.

What I really wanted to say was, get the fuck out of my house!

My Take On This

It’s typical for all people with Multiple Sclerosis and many other diseases to start off the day chipper and ready to go (some days).  As the day passes, or rather the hours or minutes, you find yourself slowly losing the energy you started off with.  If you’re trying to maintain the momentum, forget it.  It’s like trying to catch a fish in a pond.   It just takes too much energy to hold on to the energy.

As far as my wanting my dear sweet cleaning ladies out of the house?  Aw come on!  When you’re peeing in your pants about the last thing you want is a house full of cheerful people who keep asking you questions.

 

 

I went here and there, picking up things and setting the rooms aright.  My cleaning service ladies should be arriving soon.  It’s funny how one does this just before the before the cleaning people come.

While doing this, I felt my energy slowly slipping away as though my efforts were like attempting to start a car that wouldn’t start.  You turn the ignition and the feeble sound of the car battery lets you know that if you don’t start it soon, you won’t be able to start t at all.

Finally, I made it to the kitchen and stood there looking around.  I could see some things to be set aright, but they seemed daunting to me, as though moving some dirty dishes from the counter to the dish washer would succeed in only grinding the engine of the car (my body) to a screeching halt.

I gratefully let the cleaning ladies in shortly thereafter and slumped in my chair in front of the computer.  What I really wanted to do was get undressed and crawl back into bed.

I have very cheerful cleaning ladies and the loud talk, music and the repeated, “How are you Miss Maggie?” was sweet but just too much both at the same time.  I couldn’t wait for them to leave.

While I dawdled at the computer, I mean who could do anything constructive with all the noise here, I realized I needed to pee.  I could easily make my way to the bathroom and chase the ladies in there out, which I’ve done before.  I stood up about to do that very thing when I felt it let go.  There I was standing by my chair peeing (luckily, I had protection on) and trying to smile at the cleaning lady that just popped into the room.  “Is there anything I can do for you Miss Maggie?”  I smiled and said,

“No, I’m okay.”  I quickly turned around and sat back in my chair.

What I really wanted to say was, get the fuck out of my house!

 

I went here and there, picking up things and setting the rooms aright.  My cleaning service ladies should be arriving soon.  It’s funny how one does this just before the before the cleaning people come.

While doing this, I felt my energy slowly slipping away as though my efforts were like attempting to start a car that wouldn’t start.  You turn the ignition and the feeble sound of the car battery lets you know that if you don’t start it soon, you won’t be able to start t at all.

Finally, I made it to the kitchen and stood there looking around.  I could see some things to be set aright, but they seemed daunting to me, as though moving some dirty dishes from the counter to the dish washer would succeed in only grinding the engine of the car (my body) to a screeching halt.

I gratefully let the cleaning ladies in shortly thereafter and slumped in my chair in front of the computer.  What I really wanted to do was get undressed and crawl back into bed.

I have very cheerful cleaning ladies and the loud talk, music and the repeated, “How are you Miss Maggie?” was sweet but just too much both at the same time.  I couldn’t wait for them to leave.

While I dawdled at the computer, I mean who could do anything constructive with all the noise here, I realized I needed to pee.  I could easily make my way to the bathroom and chase the ladies in there out, which I’ve done before.  I stood up about to do that very thing when I felt it let go.  There I was standing by my chair peeing (luckily, I had protection on) and trying to smile at the cleaning lady that just popped into the room.  “Is there anything I can do for you Miss Maggie?”  I smiled and said,

“No, I’m okay.”  I quickly turned around and sat back in my chair.

What I really wanted to say was, get the fuck out of my house!

Drum Roll Please!

The prognosis from the nerve block done this past week?  Well it’s hard to say.

As you may recall, I saw my Neurologist and he increased my Gabapentin thinking that this was a classic neuropathic pain.

The spine doctors felt it was due to lumbar problems and gave me the nerve block.

I came up with a theory of my own.  I wondered if the ill-fitting chair that I sat on all day was the problem, with no back support and having to sit up forward all day in it.  The chair seat feels hard.  I decided to stay off of it this week, for the most part.

I do feel somewhat better.  It’s not gone, but it’s down to about a 5-6 in pain level instead of a 10 to a zillion pain level.

Could it have been the drug increase?  It may have been because I started to feel a little better prior to the nerve block.  If this was it, thank you Doc, but I’m walking around in a daze from being on so many meds.

If it was from the nerve block, well thank you docs.

If it was from staying away from a bad chair.  Well, thank you to me.

My Take On This:

I think perhaps it was a combination of all three things.  It happened just in time, because I was wanting to look for the hack saw to get rid of the darn legs.

Whatever the reason for the slight improvement, I will take it and accept it with profound gratitude.  I don’t feel relief from pain but I feel improvement.

Hey every little bit counts.

 

Can I Run Away From Myself?


Well folks.  I’m here to tell you that right now I’m beside myself handling all this pain I’ve been experiencing.

It all started almost three months ago.  I began to feel a strange tingling in my legs, stronger on the left side.  It was strange because it just went from my knees to my ankles.  It came and went.

Then the intermittent periods between it’s coming and going shortened and I started experiencing pain.  It was the sensation of a charley horse.  You know how you know that it’s coming?  You start to feel a pain that builds and builds then it gets to the peak and goes over into excruciating pain.

What happened to me is that it went over into excruciating pain and it never went away.  It’s horrible.  Add to that the tingling sensation!  It decided to join the pain party and get stronger.  It also decided to stay at the party like an uninvited guest who doesn’t know it’s time to go home.

Have you ever used a tens unit?  Well if you turn the tens unit too high you get awful pain from it because it’s like an electrical sensation that’s too high.

This is what I’ve been living with for two months now.  I’ve been to the hospital twice trying to get help for the pain.  They helped me over night by giving me morphine and they ran all sorts of tests.  They felt it was coming from my back.  There was no definitive reason why they thought that, but that is what they said.  During the one stay at the hospital, their solution was to give me a heating pad to put on my back.  This was the instructions the hospital neurologist gave.

It was a very odd visit with him.  He could barely hear and no matter what I said he insisted that I had back pain.  I kept insisting that I didn’t.  My general practitioner also felt that way.  She felt it was sciatica.

There is no point repeating myself relentlessly because I know my last blog mentioned a lot of this.

Here is where I’m at now. MRIs were taken of my lumbar spine and my cervical spine.  My lumbar spine showed a bunch of stuff, but the radiology report was not definitive that about anything impinging my spinal cord.

My neck, however, showed that in three different areas, my spinal cord was impinged.  It was decided that I see a pain management Doctor for my legs and surgery for my neck.

I went to see the pain management Doctor.  I was given Tramadol for pain which is dispensed one week at a time and that they would like to try an injection in my back, under anesthesia, to block the over active nerves from sending pain signals to my legs.  This will be done on the 15th of January.  I figured, what the heck.  I will try anything to get rid of this pain.

Then I saw the neurosurgeon about my neck.  He told me, they will go in through the front of my neck, push everything to one side, in order to reach the cervical spine.  They will then remove three discs and replace the whole thing with a rod. But wait…there is more!

I finally saw my MS Neurologist.  I bombarded him with everything that had occurred since we last met.  I did wonder if the pain in my legs was from MS or something in my back.  Since the consensus from so many doctors was that my back was the root of the problems, I went along with the crowd.  However, my neurologist asked me to explain the pain from onset to where it was that day.  I did.  He looked at me and he said, “What you’ve explained to me is a classic case of neuropathy.”

                “What do you mean?”  I asked.

                “No kidding.  You explained to me precisely what happens with neuropathic pain.  The fact that it doesn’t seem to be connected to pain in your buttocks or your back and that it seems to be concentrated in just your lower limbs.”

                “Oh no!  What should I do about the nerve block procedure?”  He thought about it for a second and said.

                “Well just in case I’m wrong, I would go ahead with the nerve block.  I doubt that it will help, but if it does, then great!  However, I think we will try and treat this with medication as well.”

I thought about everything he just told me.  On the one hand, I was pissed off at all the doctors who treated me at the hospital with heating pads and morphine.  Why in the world didn’t they think about neuropathy and help me with medications.

I was also pissed off at me.  Why didn’t I call my Neurologist when all this started?  I thought about it, but I didn’t act on it.  Instead I waited hoping it would just pass like so many other things come and go in MS.

He did agree with the Doctors about my neck because he too had received a copy of the radiology report.

My Take on this:

Relief from pain.  I don’t care what it takes.  I’ve lived in 24/7 pain for nearly three months and my heart goes out to people who live in this kind of pain for so much longer.  I can see why some have suicidal thoughts with this kind of pain day in and day out.

I wanted to run away from myself.  I wanted to shed my body and just turn around and kick the old thing.  I wanted to run as far as I could from it. 

I usually look at my life five minutes at a time, but right now I have things looming in front of me that is difficult to ignore.

The shot should be nothing…I hope.  But the cervical spine surgery is not something to slough off as nothing.  I don’t know how much more my body can continue to take at this point.

Let’s forget about all that I just wrote.  There are a lot of positives that can loom ahead in the future as well.  I should not be ignoring that. 

Take one step in front of the other and …  and…

Does anyone know how to run away from myself?

I Can’t Hear You

You go along, working on being strong but conserving your strength (LOL) like the Doctors tell you and then…….Reality hits like a sledge hammer.

Paresthesias  abound.  You try to ignore them.  You go about your business as though nothing is wrong and then you finally succumb to whimpering and crying because this particular one is unusual in its tenacity to hang on to you as though there is no one else in the world to bother.

Ianded up in the hospital on morphine for two days.   The Doctors there scratched their heads trying to figure out what was the cause of it.   They weren’t neurologists.   My Neuro was an hour away unaware of what was happening, and beside that, he had no visiting privileges to that hospital.

They put me on morphine.  That was good because it quieted things down a bit.   Then I could see that look in their eyes of “what do we do next?”

I told them over and over, “call my neurologist”.  They said they would call the neurologist on call.   Meanwhile, they drew blood or tried to.  After about an hour of trying, they decided to put a PICC line in me.  Oh great!  More to deal with!  Off to Interventional Radiology I went.

After that ordeal, it was decided to do an MRI of the spine.  Great!  It’s their money.  I’m just a patient.  I don’t know what is wrong with me!  Wrong!  I do but I don’t.

The Doctors came back with the Radiology report in hand and indicated to me that they were still unsure.  It could be this or that and by the way, did you know, blah blah blah?

The next day they told me the Neurologist was just outside my room.  Great, I thought.  Now we will get these other Doctors to understand the nature of having Multiple Sclerosis.

He came in after consulting with the other Doctors and said to me, “I hear you have back pain!”  I said,

                “What?”

                “You have back pain and we will leave you on morphine for the time being until we get more information.  Also, I have ordered a heating pad for you.  See if that helps.”

                “But Doctor.” I said.  He interrupted me and said,

                “Speak louder, I can’t hear you”. I realized then that this man should have retired years ago.  He didn’t understand me and I couldn’t understand him either with his thick accent.

I looked at my husband and he said “Useless.”  That’s my husband.  Comes straight to the point with one sentence.

My assigned nurse came down with a strange looking box and plugged it.  She handed me the pad part and told me to lean back on it as she held it in place.

I sat there dumbfounded.  I realized that this hospital or at least the neurologist assigned to me knew very little about MS.  They knew about the disease but didn’t know how to treat it.

I knew that either I was having an exacerbation of MS or that something was wrong with my lower spine.  What was wrong with my lower spine could be a lesion from MS or it could be normal wear and tear.

I decided to sleep with the pad because the heat felt good and deal with the issues that were pounding my brain trying to get a voice out.  I quieted the voices down and told them later.  My husband just sat there quietly, but when everyone he said,

“We are never coming here again!”  I nodded.

The following day, after waiting more than 5 hours for my GP to arrive, we decided to leave AMA (against medical advice).  On the way out, we ran into my doctor.  We explained to her why were leaving.  She told me she was going to refer me to a Rehab Facility.

I sit here now talking to you through my words at 5:02 a.m.  I slept a few hours earlier and now I’m wide awake.

MY TAKE ON THIS:

Don’t despair if you are in crisis and taken to a hospital. Deal with it, get what you need such as pain meds and leave.  You can’t really fault the hospital for not knowing how to deal with you.  The only thing they know how to do is run diagnostics on you and treat the symptoms.  For that matter, so would a hospital with knowledge of Multiple Sclerosis do the same thing.  Run diagnostics and treat the symptoms.

What makes a difference in hospitals is the neurologists they have on call.  I could have waited the second day and asked to see a different neurologist, however; I was at a point in my pain frustration that all I wanted to do was go home and deal with it there until I saw my own neurologist.

Turn this bad experience and find something laughable about it.  We did.  My husband and I laughed all the way home after bitching about what happened.  It was a fiasco.  The only good thing about it was having morphine for two days.

Sedate me please!!!