Then Was Then This is Now.

that-was-then-this-is-now-quote-coeurblondeHello again,

I wrote a lot about the pains in my legs.  I also wrote about the treatment I had been getting for these pains both bad and good.  I believe I left off with seeing a new Pain Management Doctor under advisement of my Internist.  The plan with the new Doctor was to go ahead and try another shot in my L5-S1 joints of my spine.  He decided to do it bilaterally, meaning that since each disc of the spine has two nerves coming out of it, both right and left sides, that it made more sense to do the shot on both sides.

It’s been about four days since the shot.  I’m feeling better.  It’s not to say that the pain is completely gone, but I’m feeling almost normal again.  I hold my breath each morning when I wake up.  I take tentative steps out of bed hoping that how I felt the previous day is maintaining the status quo.  Sure enough, it has.  Let’s see how long this last.

Between my Internal Doctor adjusting some of my meds to the maximum dosage and the shots, I think I may land up having a decent summer.  I’m so grateful.

Moving on to other bits and pieces of living life with Multiple Sclerosis.

Many of my medical caregivers are impressed with how I’m still standing on my feet, digging ponds in my back yard, and the list goes on.  They are also impressed with my mental attitude given the history of Depression with Post Traumatic Stress Syndrome.  (There was a time I would not have mentioned my mental illness let alone write it for the whole world to see).

I’m not impressed.  For me, I don’t know any other way to live my life but to fight.  It comes natural to me.  My life has been an uphill battle since I was a child, so fighting to live my life my way is the norm.

I don’t want to write about how terrible MS is.  Sure, it is extremely difficult and can be very painful for some.  Not all of us progress the same way.  I’m at a stage where I’m very symptomatic all the time.  This doesn’t mean I want to wallow in it.  I don’t want to use this written venue to spout out how terrible I feel.

I give you the facts.  I tell you everything I’m going through.  However, I don’t pontificate about the woes of it all.  There are times when I do express my deepest thoughts.  What made me cry, what upset me, and so forth.  But again, these are facts.  This is my life.  This is not a venue, at least for me, where I’m expecting claps on the back for being strong or whatever.

For me, this venue is about educating people about Multiple Sclerosis and what can happen to a person along the way.  Armed with this information, they are aware and can be prepared, should these very issues happen to them.

Sure, there are times when I’m miserable, like these past eight months with intractable pain with no relief in sight.  However, for the time being at least, there is relief.  Should the pain return, then we’ll try something else.

I was delighted that I was able to treat my husband to a Father’s Day dinner.  The amazing thing about it was that I was able to sit on a chair without wiggling the whole time trying to find a pain free way of sitting, and that I sat through the entire dinner without having to get up early and wait for my husband outside while he paid the check.

Then was then and now is now.  What happened before is now history and today is a new page in history.  I concentrate on what is important and don’t bemoan what is lost.  There is no point in it.

This isn’t something learned overnight.  I believe that one must go through a learning period of comprehending this.  When you get tired of hearing yourself talk, then you know it’s time to change your perspective.  When you get tired of reading your own words, then it’s time to change something.

I’ve gotten to a point where I just can’t tolerate being by people who are stuck in a rut and won’t take the helping hand in front of them to pull them out.  They insist on staying there believing that everyone else wants to hear them wailing from the rut, that they can’t get out.  I don’t want to hear about it and I don’t want to read about it.

I am not looking for sympathy.  I’m looking for solutions.  I’m grateful when someone comments about how they like reading my words.  I appreciate that because it takes effort and thought to do it.  I give to you with my words in the hopes that you come to understand the life of people like me.

I try to stay in touch with other MSers but not when they drag me down.  I can’t afford to be dragged down.  If they need help and they ask for it, I will gladly give it to them.  I don’t have the strength to try and pull someone out of the rut if they in turn, try to pull me in with them.

We all have our reasons for writing.  They have just as much right to this venue as I do.  This doesn’t mean we have to like each other’s blogs.  Some of these bloggers are excellent writers.  They use their blogs to satisfy their own needs, whether it is like my reasons or for their own reasons.  Kudos to them.

What it all boils down to is if I’m going to spend my time writing, I would like to think that I do it well and that I give people food for thought.  Other writers are also giving people food for thought.  I’m proud of all us bloggers who write about this disease called Multiple Sclerosis.  It’s important that people read all our blogs to see the effect it has on us at various stages of the disease.  How different we all are and yet, how similar we are.

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On Maggie’s Pond

I’m sitting here noticing that I need to clean my keyboard.  I can do that!  I focus on what I can do and not on what I can’t do.  If I sat around bemoaning all the things that I can’t do, just give me a shovel so that I can dig a hole six feet deep that I can crawl into.  Only problem would be is how would I get the dirt filled up after I’m in the hole.  That I can’t do.

Living with Multiple Sclerosis is not a death sentence.  It is not something to despair over.  It can lead to a shorter life depending on the type of MS one has, and actually; it may lead to a shorter life for those with other variables of MS, but not by much.

What is significant about MS/Multiple Sclerosis, is all the things we can’t do as time goes by.  You don’t get a diagnosis of MS and all of a sudden you are bedridden or significantly impacted in an obvious way.  Many people have MS and still work.  Many people, inclusive of those I know; you would never be able to tell they have the disease.  Many people, including myself, have advanced into severity but still go on taking care of the house and other activities like yard work, etc.

Let me show you an example.

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I started this pond last year.  My husband dug out the slate for me and put them in piles around the hole that I dug.  My husband helped define the hole for me.

This was my baby.  It was something I wanted to do on my own so that I could feel a sense of accomplishment.  It was something I could do.  It took me nearly two years to do it, but I did it.  I carried each one of those rocks from one part of our very large yard to the pond.  Along the way, there were things I couldn’t do, and I gladly turned it over to my husband.  Although he was very concerned about my falling, which I did often, he left me alone when I wanted to do it alone.  He did put his foot down a few times and insisted I come into the house but he balanced his concern with my determination to do this.

It wasn’t easy.  It took forever and many small steps to carry stones.  I couldn’t use a big cart so I piled rocks into my shirt and carried them that way across the yard.  I averaged about three trips in an hour and the rest of the time, I laid the rocks into position.  I still have a ton of rocks to go, but at least it looks like a pond.

There were many falls, one where I had to lay there a couple of hours before help came along.  It was okay.  I turned over on my back, watched the clouds and made up a melody in my head.  When I was asked how long I had been laying there, I white lied.  What would be the point in worrying anyone when I was hurting?  The hurt did not come from the fall but from my legs, which started last year.

At that time I thought that perhaps my legs hurt because I wasn’t doing enough on my legs.  I wanted to work them out.  It didn’t work.

I focused not on building the pond, but on picking up a rock, putting it in my shirt, then picking up the next rock, and so forth.  Then I focused on the long walk back to the pond, or at least it seemed like a couple of miles.

The pond was the ultimate goal but the pond gets built by a lot of small steps.  I focused on those small steps and broke those small steps even further.  I landed up with mini steps.  Those I could do even if it took me all day to do what someone else could do in one hour.

This past weekend, I was like a child excited about going to a candy store.  We went to the pond store where I purchased six Koi fish.  I tried fish last year, but the pond’s habitat wasn’t mature enough.  I waited a lot longer before I finally deemed the pond habitable for fish.

My Take on This

Multiple Sclerosis is a disease that when you first hear the diagnosis your head spins with envisioning the changes that will happen in your life.  Yes, they are disturbing and yes, it seems calamitous.  It leads, for many of us, to debilitating lifestyle changes…gradually unless you Progressive MS.

I’ve had MS for 30 years, if not longer.  I still work around the house and in my yard.  I still walk with a cane or walker.  I am using my wheelchair a lot more frequently these days.  I have more than likely moved into progressive but I’m not asking if I have.  I don’t care to know.  It’s enough knowing that I have Congestive Heart Failure now.  That is something to worry about.  I’m trying not to.  The prognosis for that is about five to ten years, but my internist said he knows of some who have lived longer.

If one thing doesn’t get you, something else will.  It’s the nature of life.  We all die.  

It’s how we live that’s important.  It’s what we leave behind that counts.  We live on with the memories we gift people.  I concentrate on quality not quantity.  I concentrate on embracing the difficulties of the day not on defending myself from those difficulties.

Multiple Sclerosis is not a death sentence.  It is just one of those incredibly difficult and painful things that some of us are burdened with.  

I want to leave this blog behind as my gift to the MS world.  It is concise, brutally honest, happy, sad, uplifting, and depressing.  It is the whole of what MS is in “my” life.  It’s different for everyone.  In the long run, I want readers to feel that they have gained a lot of information (not the technical stuff), about what life is for one person with MS.  

My motto is “MS does not define me.  I define what MS is in my life.”

 

One Pot Cooking

It’s here!!!  My card came in making it legal for me to purchase and use medicinal marijuana for the pain I experience because of Multiple Sclerosis and other neuropathies I’m experiencing from other problematic breakdown of my body.  What I need to do next is to make an appointment with my distributor.  It can take a week or two before I can get in.  It seems the facility is quite busy.

For those of you interested in this, it is a somewhat long process from beginning to end.  I would say it took me about 2 months to get the ball rolling and now another couple of weeks before I can get started unless I luck out and get in sooner.  The most important part of the whole process is through your neurologist.  They are the ones who enroll you and get your ID # to fill out your forms.  Without this, you can’t do it.

My neurologist suggested it to me, although I had heard about it.  I didn’t know if I should go that route myself, but he seemed to think so.  When I told my internist that I was going to try it, he was glad that I was.  It seems that in the medical field, there are more doctors approving of this than disapproving of it.  I even spoke to my pharmacist about it and he too was glad.  He told me his father was just enrolled in it and seemed to be doing well on it.

In regard to the pain in my legs, after trying several different drugs that my internist tried me on to no avail, he decided that I should go back and see yet another pain management doctor.  This doctor is one he approves of.  I had my first visit with this doctor this past week and my visit was quite different than with the other facility.  I was talking to the doctor for at least 20 minutes and he examined me thoroughly.  With the other facility, I dealt with a PA and only met my doctor one of the times I went down for a steroid block, just before the procedure.

It ‘s been decided to start over and take it step by step and we will see where this all leads us to.

I will keep you abreast of the marijuana and the new pain management doctor.

I hope this finds you all in relative good health and let me know if there is anything I can do to help you.

 

Ups and Downs of Home

Hello!

First off I would like to thank you for your response to my ongoing harrowing and painful dilemma with my legs.  Nothing has changed.  I’m still struggling with what to do next.  I am waiting for my ID card for medicinal marijuana and I’m curious and anxious to see if that will help any.

My neurologist ordered it for all the spasticity I am having but who knows.  It may also help with this pain as well.

I think I’m going to schedule an appointment with a neuro surgeon to see what they have to say.  I do have an appointment with another pain management facility but I just don’t expect much from them based on my experience with the last facility.  Since my internist wants me to try them, I will.  My husband and I believe that we need to get to the root of the problem and get it handled since it seems that this is not going to go away on it’s own.

I’m tired of talking about it.  I will keep you informed about the medical marijuana experience and anything else new to do with all of this.

How are you all feeling?  I’m tired.  I don’t get enough sleep and when I do sleep, it’s always an intermittent type of sleep–one hour asleep, two hours awake.  I have huge dark circles beneath my eyes.

I’ve been thinking about moving.  Not now due to all the medical issues I am having but perhaps this fall or winter.  Not sure yet.

I have a large 2-story house.  The problem I am having is with all the levels on the first floor.  You have to go up two steps into one room, then down two steps to leave it.  This is all over my first floor.  There is the kitchen, my office, and the small family room that is all one level.  A half bath is also available.  Oh I forgot.  We added on a bedroom to the first floor as well with a full bathroom.  However, I hang out in 3 rooms.  The kitchen, office and family room.  I can’t even go in the backyard without struggling to get down some steps, so I don’t go out often.

I need a rancher.  We don’t want an apartment or condo.  We have too much stuff and we both hate living with neighbors everywhere.

This is about all I can handle for today so I’m going to cut it short and sweet.  I will write again soon when I have more energy.  Right now I’m slumped in my chair and leaning way over to the right.  It’s uncomfortable.

Hugs to you all.

 

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.

 

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.

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!!!

I’m So Fricking Tired!

Fatigue.  What is it?  Medicine Net describes it thus:

  • Fatigue (either physical, mental or both) is a symptom that may be difficult for the patient to describe and words like lethargic, exhausted and tired may be used.

The dictionary website describes it as this:

noun
  1. weariness from bodily or mental exertion. a cause of weariness; slow ordeal; exertion:
the fatigue of driving for many hours.
  1. Physiology.  Temporary diminution of the irritability or functioning of organs, tissues, or cells after excessive exertion or stimulation.

What about fatigue in Multiple Sclerosis?  The above MS website has this to say.

Fatigue
People with MS may become more easily worn out after physical activity than usual. In addition to experiencing physical fatigue from doing simple things, people with MS may also experience mental fatigue from depression. There is also a type of fatigue called “lassitude” or “MS fatigue” that many believe to be unique to people with MS, which is generally more severe than normal fatigue. This type of fatigue may happen almost every day and could start early in the morning after a good night’s sleep. Lassitude also often worsens with heat and humidity.

Here is what fatigue means, not a quantified version of what fatigue is.

  • It’s the inability to sleep soundly at night. Yep, you heard me or read me…whatever.
  • You want to sleep but you can’t or maybe you won’t. You start out in bed and you fall asleep, but after an hour or two, you wake up.  Why?
  • Incontinence, must go to the bathroom.
  • Pain, you wake up with it.
  • Brain turmoil, there is too much going on in your head and it won’t let you rest. A sense of having to get something done.
  • You awaken bright-eyed and bushy tailed.
  • For me, I prefer night to day.

When you wake up, whether it’s in the morning or in the middle of the night, you are going to feel tired.  That’s true, but tired and fatigue are two different things.  Tired is due to all of the above, so is fatigue, but fatigue is so much more than that.

You want to go back to bed, but you don’t.  I know.  It’s a conundrum.  It’s habit forming to stay up once you wake up.

Another reason is that you’re too “tired” to go back to bed.  I know, it doesn’t make sense, but those in the know—know.  It takes too much energy to crawl into bed again and go through the whole process of trying to sleep.  This part is fatigue.

It’s easier to just stay up and walk to the computer with coffee in hand than to go through the nightmare of the sleeping process.  However, once you’re at the computer, or watching TV, you fall asleep with your coffee in hand.  You wake up with scalding coffee dripping down you.

You jump awake and you hold your nightgown away from your body to stop the burning, but you don’t go change into something clean.  You wait until everything cools down and you continue doing whatever you were doing until you fall asleep again.

The day becomes a nightmare.

You try to listen to conversations but you feel yourself falling asleep.  You snap awake, but you find yourself sliding down again.  You can’t control it.  If you’re doing something physically active, it’s easier to stay awake, but I’ve found myself falling asleep standing by the sink doing dishes.  You have a form of narcolepsy.

You have no desire or very little desire to do anything.  You force yourself to do things, nonetheless.  At least I do.

I am blessed with artistic abilities in various forms, so that can keep me busy—for a while—then I fall asleep.

You feel compelled to say yes to friends and family to do things with them and yet you have this deep-seated desire to say no.  When it comes time to do this activity, you bail out or you go and try your best to be “there” in the moment.

Fatigue to me is this overwhelming desire to stay in my jammies, which I do anyways most days, and do nothing.  My head is too heavy to lift, so are my arms and legs.  I want to lie prone.  I want to do nothing and think about nothing.  I don’t care about anything.  I am neither here nor there about every conceivable subject.  However, what I just wrote is the last thing I want to do.  I don’t want to lay prone and do nothing.  It’s impossible for me to lay and thing about nothing.  I do care about everything.  I am here and there.

Once again, I’ve written things that may be confusing to people.

I’m not explaining this very well, but I’m here to tell you, yes you, who think that you know what fatigue is, you don’t know anything!!!

You are tired and sometimes feel fatigue.  That’s it.

We are fatigued and sometimes feel tired.  Another ball of wax entirely.

Nothing has happened to me to cause me to write on this subject except that I’m feeling fatigued.  My mind has gone on a hiatus.  It requires rest and quiet.  Not rest in the way of sleeping, but a slowing down of the world at large and being in a place where decisions belong to someone else.  Unfortunately, my world does not slow down.

People think that when you are disabled and a stay-at-home person, that you have all this time on your hands to just do whatever you want or do nothing at all.  To a certain extent, this is true for some.  This is not the description for others.

I will talk about this in my next blog because if I start it here, this blog will be ten pages long.

Hugs to all who read this.  I sincerely appreciate your eyes that touch upon the words written by my shaking hands, the heart that takes to heart the words of confusion and yet cohesive linear paths to what it is I need to say.  Well maybe not so linear.

 

 

 

Write or Wrong

what we are unable to sayHello my dear friends,

I have posted several articles that have been somewhat generalized.  Although I feel that it’s okay, at the same time, I feel that I wasn’t living up to the promise I made myself.  That promise was to keep this site very intimate and blatantly honest.

It’s not that I’ve been dishonest, but it has been written about subjects that are not very intimate.  I do realize that one can’t always be intimate because there are months when nothing new happens.  I don’t want to keep rehashing relentlessly about the same old things.

The goal was to tell you about MY life with Multiple Sclerosis, not about other’s and not about the subject in general.  However, as I said above, when nothing new happens to relay to you, there really isn’t anything to be said.  I am honest about this.

You see, I’m not the type of person who keeps going over and over the events of my life.  Sure, I think about them and sometimes in real life, not the written word, I will talk about it with a friend, but once said is once said.  Repeating it again is pointless.

Repeating it again, in this venue, however; is actually necessary.  Now that I think about it.  People don’t bother reading all the articles, do they?  I know I don’t when I follow someone’s blog.  Most authors aren’t all that interesting after a while, including me.  Don’t you think?

I write when I have something to say.  I don’t write just to write, although in college, one is taught to write something, anything, to practice one’s craft.  Singers have to sing to maintain their voices.  Actors practice their lines over and over.  Perhaps I’m wrong and college professors are right?  I don’t know.

I do have some new events to tell you about but not today.  I’ve gone on and on about feeling guilty over not writing, that I’ve actually written an article about it.

What writing does for me is help clear my brain fog.  It helps me come to decisions and it helps me to either berate myself or stop berating myself over one thing or another.  I am my toughest critic.

Try it sometime.  Write!  You may find that it helps you in many ways.

Doctor, Doctor

As I look ahead at the week before me,  I see that, as usual, it is dotted with medical appointments.  The sad part about it is that, I can’t always tell which doctor is for what. The doctor’s names get all jumbled up in my head and I have to think deeply, now what is that doctor for–my MS or for my CHF (Multiple Sclerosis and Congestive Heart Failure respectively)?  Another sad part about it is that, for the most part, these become occasions much like an outing to me.  Why?  Well let’s get back to the topic of what this site is about.  MS Life.

A life with Multiple Sclerosis is not all that different than a life without it, if you want my two cents worth.  Whoa!  I can hear you yelling at me.  Hang on a bit and I’ll explain myself.

Come on now.  To the world at large, unless we are obviously wheelchair bound; we don’t look like there is anything wrong with us, sitting still that is.  Me, it would be a bit different because I hang down to the right, meaning my head and body slouch down on the right side.  This isn’t always the case.  When I get my Botox injection every three months, I can almost look normal standing or sitting.  It doesn’t help that I have ACH (Arnold Chiari Malformation), as well.  They had to remove several vertebrae in my neck.  I slump because of that as well.

Many in wheelchairs aren’t glaringly disabled.  Right?  We have to have them.  I own one.  I use it whenever I know I have to walk around for a long time, or go on trips.  People don’t know that we can’t walk a straight line or that the fatigue that sets in is like we’ve just been saddled with two blocks of cement around our ankles, prohibiting us from walking more than a few steps.

What about our “drop foot“?  I know that at my worst, I actually was knocking myself right off my feet because my feet were always catching on something that tripped me up.  I should wear my orthotics but I’m in need of new ones.

We don’t present as disabled people to the outside world.  It’s an uneducated public that we contend with.  Still, we go about our business just like anyone else despite extreme fatigue, multiple paresthesias, pain (yes there is pain with MS), and numerous other problems including incontinence.  Most of the things we struggle with aren’t glaringly obvious to the world-at-large.  We go about our day and not many people will know that we are ill so that’s where my “two cents’ comment above came from.

Life with MS IS not a normal life at all!  We just try not to shove it down anyone’s throats. We are polite about it.

  • We smile, maybe too much.
  • We laugh, maybe too loud and too often.
  • We are reliable, oftentimes when we should be in bed.
  • We run our households, because there is no one else to run it for us.
  • We look great, thanks to visits to salons or nail places.
  • We volunteer and step up to the plate, even though people won’t do that for us.
  • We create and work, like others.
  • We are moms and dads to our children.
  • We are husbands and wives and try like heck to please each other.
  • We try to keep an even temperament, even though we want to scream and yell at the world.
  • We are charismatic and charming, even though we are weeping inside and craving solitude.

Getting back to my original point about doctor visits becoming occasions for me.

There is such a war that goes on every day in our lives for both healthy and disabled individuals.  It becomes more intense for the disabled.  (I HATE using that word “disabled” but for lack of another one that describes our daily lives, it’s the best one to use.)  We appear one way but our lives are significantly different than the book cover we wear.   It’s difficult to explain what I’m trying to get across.

You want to go out, but then you don’t.  You want to have sex, but then…ugh.  You want to get up and get dressed.  Hours later you’re still in your pj’s.  If you look at the bullet list above you get the idea.  You aspire to do it all and yet you don’t give a fuck if you don’t any of them at all.

We are inconsistent!!!  We are consistent in our desires however.  Think about it.  Let’s say you have a terrible flu.  You have a fever.  You feel hot then you have the shivers.  You want to sleep but then you want to get out of bed.  You want to clean yourself up but the thought of jumping into the shower seems like so much effort.  You want to clean the house because it’s a pig sty, but you snuggle under the blankets and go back to sleep.  Blah, blah, blah.

This is our life.  Life with MS.  24/7, 365 days of the years!  No getting away from it.  It is what is is.

Going out to see my doctors?  Hey, it could be great fun or it could be, “I think I’ll call and cancel.  Now let’s see.  What excuse did I use last time?”