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.

 

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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.

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 Child Who Skips

difficult roads
I’ve been in the hospital for about a week and find myself on yet another difficult road–par for the course.
I’ve learned some news from Doctors that stopped me dead in my tracks, so to speak.
Adjustments must be made. Things to do, people to see and hug. Wrong turns corrected–or not. It’s up to them. I’m happy with whatever the results may be because I know that my roads have been tumultuous and littered with debris from many storms, but I’ve crawled through them coming out on the other side with my decisions if not always clear to others, damn clear to me.
I live my life to inspire and to be inspired. I’ve not the time nor the energy to sweat the small things.
It’s funny how people don’t always walk ahead, stop, turn around, to see how far they’ve come. Remember how children run ahead? They turn around to see what’s keeping you? You try to stop them from running too far ahead for fear of danger, but they skip along unaware of such nonsense. They are fearless, excited, and if they fall or hurt themselves, they cry for a bit and then are merrily along their way with their “boo boos” kissed away.
That’s what my life has been like with the exception that there was no one to kiss my “boo boos” away. I kissed them myself. I’m still kissing them, but some things just can’t be kissed away.
This is a big “boo boo.”
My intention is to run ahead, turn around, and smile at how far I’ve come. I already know there are people left behind, but that has been their choice…..a horse to water and all that.
Once I’ve patted myself on the back for having come this far, I will turn around and look ahead instead, yet again, eagerly trying to see what’s around the next corner.
I will never grow up and I’m glad I won’t. Instead I will skip along holding onto other’s hands, or not, and when I’m so tired that I finally fall down to the ground wanting to be picked up by a parent to carry me to my bed, I will nestle in the arms of God who has been there all along even though He chose not to show Himself. (Whew, that was a long sentence.)
“Difficult roads lead to beautiful destinations.” I love this quote and have no idea who wrote it. I’m fortunate enough to have found these destinations late in life with profound love in my heart.
With quiet fortitude, patience, indulgence, and insistence on wearing “rose colored glasses” when viewing me skipping along, my husband, David Obert, has been the flower in my hand.

TRY TO REMEMBER

Im confusedI’ve been seeing the man in the moon into the wee hours of the morning.  Every time I try to sleep, I can only do so for a couple of hours and then I’m up again.  I’m told I have very dark circles under my eyes.  I didn’t need to be told.

My mirror reflects back at me the sight of a woman who appears ill.  If I go through the whole makeup routine, then the mirror reflects back at me a woman who appears ill with too much makeup.

I have been busy with so many things that I don’t have time to think.  In fact, the actual thinking that I can do, is mostly disparate pieces of puzzles, floating around in my brain looking for another piece to lock onto to form an entire picture.  That’s not how my brain works any more.

For those of you interested, I have a favorite app that I use for doing jigsaws on the computer.  It’s called Brainsbreaker.  Click on the word and it will take you to the link.  It’s a great way of taking your mind off things.

There is not much to write about when you don’t go out.  I feel like a recluse.  Having given up my car which I regret doing, I find myself like a bird in a cage, looking forlornly out through the bars.  Even if that bird was let out, his wings have been clipped, so he can no longer fly.  If anything, he could hop around from one location to another, but he would still be a caged bird with just different cage walls to look through.

My life at home, of late, has been one of oil painting, playing games on the computer, Facebook, composing songs then painstakingly putting the notes into the score.  Then repeating the whole process when I add a new instruments to the score.

I also keep busy writing my book and in here, although it doesn’t appear that I’ve done much in here lately.

Confusion, insomnia, incontinence, tremors, spasms (spasticity), optic neuritis, falls, loss of balance, hearing problems, paresthesias, peripheral edema, incredible fatigue, chronic iron deficiency, extreme vitamin D deficiency, congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD),  allergies, and a huge seroma in my gut that will be removed in two weeks.  It’s larger than a football.  Add to that a failed carpal tunnel surgery.  I’m sure I’ve forgotten some things but you get the picture.

This is my life with MS.  My days can be nightmarish and usually, people would get their restorative sleep at night.  Oh no!  The man in the moon wants to go dancing!  I waltz away with him till I am literally drooping in his arms.  I’m sure there is a large blotch on the moon to human eyes if someone knew where to look through a telescope. That would be me in the arms of the ever present moon.  He does hide sometimes.  He has a right to his days.

I’m not complaining.  I sometimes put everything down so that I can take a critical eye to the list.  I wish it were a “To Do” list so that I could scratch things off as I heal.  No.  This list is permanently penned to my refrigerator with indelible ink.

If I complain about anything, it would be the discombobulated thinking that I live with.  I actually have a “To Do” list.  I see something that I can do and I start to do it until something else occurs to me.  So then I need to go do that.  However, before I finish that, something else pops into my head.  This goes on all day.  At the end of the day, I have all these things half finished.

Do I finish them the next day?  More than likely not.  I move on with new things that need doing which adds to the confusion in my home and in my brain.  Oftentimes I look at something and don’t know why I was doing what I was doing to it.  I think, “What in the world?”

My other chief complaint is precisely what I wrote above.  My memory.  I don’t know why it keeps playing games with me.  If it were a separate entity from me standing right in front of me, I would smack it upside its head and tell it to get its act together.

I try to remember things.  Say I’m in the bathroom and think that I need to purchase milk.  I tell myself to write it down on the pad that is on the fridge.  By the time I wash my hands and walk out the door, I have forgotten about it.  I will go to the fridge and stand there wondering why I went there.  I open the door and pull out a can of something or other to drink.  Later on in the day, I will think.  Oh I need to get milk.  The whole thing starts all over again.

The fatigue  This is too comprehensive to talk about right now.  I will tell myself to write about it.  LOL

I hope I remember.

 

 

MISERY LOVES COMPANY?

Misery loves company?

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

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

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

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

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

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

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

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

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

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

 

WORD TO SELF:

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

Emotional Misery: 

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

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

Physical Miseries: 

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

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

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

I Danced At The Ball

danceI’ve been away at the ball, dancing around and around with multiple Doctors at one facility or another for over a month.  I danced to their tunes for a while but I didn’t like the music they were playing.  I decided to cue up my own music and they looked around in confusion.  I held my arms out and waited to see if anyone would take me up on the next dance.  I decided I had enough of listening to everyone.  It was time for me to take control of the ball (pun intended).

Having Multiple Sclerosis is a tough situation.  I admit that.  We are all hit with one thing or another medically.  I listened to every Doctor that walked into my room.  It seemed that every Doctor belonged to a group such as Gastroenterology group or Cardiology group and so forth.  I never knew which Doctor belonged to each group because I wasn’t seeing the same Doctor twice until I had been there long enough for them to start their rotation over again.

I learned that I had Congestive Heart Failure (CHF).  What a scary thought.  In the periphery of my eyes I could see the cloaked black figure carrying, is it a scythe?  Oh no, now what?

Conversation with self:  

Am I going to die?

Of course you’re going to die!  Everyone dies.  

But is it imminent?  

Well it’s imminent for everyone in a way.  One could walk out a door and get hit by a car and never know what hit them!  

Okay, alright, but do I have to know about it in advance?  I’d rather be a person who walks out the door blissfully unaware that the next second I’ll be laying splattered on the ground.  

Are you sure about that?  Wouldn’t you rather know so that you can get your affairs in order?  

No!  Well, maybe yes.  I don’t know.  Stop interrupting my thoughts!!!

Okay.  Just trying to help.

Fear is compounded when you don’t know the facts.  The longer you lay there watching people coming and going stopping to poke and prod at you,  change bags on your pole, hand you a cup of pills making sure you swallow them, the more you lose yourself in fear.  If you live a life floating around a dance hall with a partner you don’t know, the more you begin to wilt like a wallflower at the dance.

I threw my dance card down on the floor and stomped on it.  Look out.  I was about to have a tantrum.

I asked for my laptop and started bugging people for copies of reports.  I looked up everything I could about CHF.  I started asking intelligent questions and getting intelligent answers.  When they tried to speak above my head, I shifted around in my bed as though I was about to get up and use the commode by my bedside.  That brought their attention immediately back to me.  Then they remembered they were speaking to a patient not a colleague.

I insisted on viewing the tests they were performing on me, if at all possible.  I would ask, “What’s that.”  I would usually get a response.  I learned a lot.  I learned a lot about what I wish I didn’t know after a bit.

I learned I had additional problems that had to be dealt with as well.  Add a little UTI (urinary tract infection) to the whole mess of things.  It’s no wonder why I’m so short of breath.

Every year that slips by I have to contend with more and more medical issues, as I watch in disbelief.  I laid in bed contemplating life.  I felt myself slip down a spiral of depression although my face never showed it.  In fact, the staff commented how they loved coming into my room because I was always so cheerful and attentive to them.  But behind that smile and my eyes there was my body moaning and groaning on the floor with a blanket wrapped around me.  I would occasionally sit up in the dark room and stare at nothing.  I couldn’t sleep.

I was alone in my depression chamber.  I wanted to be alone.  I didn’t want anyone else in there thinking they knew how I felt.  I didn’t want someone trying to put words into my mouth about how I was feeling when in fact, I wasn’t feeling that way at all.  People try to be kind, but in truth, they are selfish.  They like to hear themselves talk and they think they have some empathetic reason to justify their speaking to me with garbage words.  Women are particularly insistent that they know how you feel.

What you need is someone to listen, when and if you’re ready to talk.  You don’t want someone to tell you to start talking, or expect you to throw yourself at them in tears blubbering about all that is wrong.  Instead, your friends or family start yammering at you about what they THINK they know.  What happens then?  You are the one who has to be patient and allow them to talk.  You sit there and listen patiently to them in order not to seem rude or cause hurt feelings.  Suddenly you’re not the patient anymore.  They are. They just don’t see it.  They are voicing how they would feel given the same situation.  I’m not them.  I’m not like anyone I know.

How dare anyone compare my life to theirs as though to say “been there, done that.”  Of course I know that’s not what they’re saying, but in reality, it feels that way and undermines rather than comforts a person who is already overwhelmed.

Depression is common to people with Multiple Sclerosis.  It’s also common to a huge percentage of the human population.  Some know that they have it, others don’t.  Some know they have it but won’t admit to it, and others do admit it.  Some are ashamed of it, others talk about it the same way they talk about having any other malady in their life.

I used to be ashamed of it.  I hated having to put it down on medical forms because it’s the first thing Doctors ask women.  “Have you been under any stress lately?”  Aw come on.  Stress?  Why only lately?

Everyone who is breathing in this world is under stress.  I repeat, everyone.  There is good stress and bad stress, but they are all stress factors.  These Doctors look at you with expectancy in their faces waiting for you to spill the beans.  Once you do, they then go on to explain, “Eureka!  This is why you’re sick or think you’re sick.”  That’s why I didn’t want to put that down on any medical forms.  I eventually got over it.

I have PTSD, post traumatic stress syndrome.  It’s put me in the psychiatric ward of a hospital a couple of times.  I have a particularly severe form of it.  I have taken medications to control it for nearly 30 years now.  I had a childhood that was severe.  When I told some people a tiny portion of my history, they looked at me in disbelief.  They looked at me as though I lied.  Even my sisters don’t remember many things that happened because it didn’t happen to them.  We were separated by age groups where we were at and my life did not commingle with theirs.  We have some similar harrowing stories but I was older.  A lot more happened to me and my memory is more clearer.

I stopped talking about my growing-up years.  I made an exception to some but spoke of it in a very broad way.  Sadly, those ears that I whispered to, listened but did not hear. Somehow, I was at fault in their eyes.  To them, I had total control of my teen years and the years I led in my twenties.  They have no idea how out of control I was.  That I was immature emotionally for my years and that the only decisions I made were based on one reason and one reason only, what was good for them.  It was, in fact, the only good thing I did during that time.  Yet this is unforgivable to them.

I have been swallowed whole by past memories.  I’ve spent long and lonely years alone travelling around the country with no home.  I longed for yesterday when I was whole for just a moment in time.  I have hurt and been hurt by people and by my own worst enemy, me.  I have suffered by my own hands and thoughts.

I lived a life of people not believing me.  Not my past history nor my present history. While visiting doctors explaining bizarre symptoms, I could see in their eyes that I had to be malingering.  Why in the world did no one believe me?  Why did doctors assign it to stress instead of testing me?  Why did other people just decide not to believe anything I said before I ever even opened up my mouth?  They built a preconceived story about me that no explanation I gave changed.  They don’t even know a smidgen of the story and they don’t want to know.  All they want to know is —why?  Even when they know why, I come out dirty, filthy and unforgivable.

It’s no wonder I suffer from Major Depression and Post Traumatic Stress with borderline personality disorder (BPD).  Now the world knows about my depression.

Depression is a real illness just like any other diagnosis.  If you don’t get it taken care of, you will get worse.  If you don’t admit it to yourself first, then you won’t get better.  If you don’t reach out for help, no help will be given to you.  You know when you have depression.  You don’t at first, but then it dawns on you.  It’s at that point that you need to seek help.

I tried to get help the wrong way.  I believed in people.  I believed that if I was open and up front with them, it would ease my pain.  But no!  Of course not!  Their pain was so much worse than mine.  Like I said.  They had predetermined who I was and nothing I said was going to change their minds.  They treat neighbors and coworkers better than I.

People in life were able to manipulate me for a long time.  I was always a highly intelligent person but at the same time, a very immature person emotionally.  I wanted love so badly that I would allow myself to be berated and stomped on if only for just a whisper of a smile, a hand held out at the ballroom dance floor from someone looking at me with love in their eyes.

I didn’t want to dance the tango at the hospital or in my life.  I wanted to waltz.  I didn’t want the push and pull, the “I love you’s and then the I don’t love you’s.”  Worse yet, “I love you but…..”  The setting of conditions.

I took control of my decidedly difficult time this past couple of months.  I’ve also taken control of other medical issues including depression.  It rears its ugly head up now and then, such as now.  I know what to do about it.

I choose to dance with the “Man In The Moon” from a previous blog who looks down on me and never gives me conditions to live up to or challenges the very core of the person that I am.  He accepts me in the darkness of the night and invites the stars to shed some light so that I can see my way to him.

I prefer the night and the beautiful peace of solitude creatively spending my time with my God-given gifts than to sit around and wonder about people.  I don’t have time for the games that people play and I’m not putting up with it.  I haven’t put up with it for years with the exception of one, whom I’ve finally let go.  I refuse to reach out to anyone anymore.  They know where I am.

During times like these, you come to value what’s truly important.  People once were, and with the exception of a few, they no longer are.

Do I sound like a bitch or cruel?  Perhaps.  It’s not in my plans to give it another thought other than getting it out here on paper to make myself read if not heard.  If no one listens to the words I am speaking through my writing, that’s okay too.

I go to the night where I can see the light of the pure soul that I was and that I’ve regained. I’ve dusted it off and shoved it inside next to my literally broken heart and my metaphorically broken one as well.

All is well.

I promise my next blog will not be so personal.

 

 

 

 

To Know Or Not To Know

It’s been a while since I’ve been in here and I apologize for this.  I’ve had surgery for a hernia I mentioned in an earlier note to you and it is taking me some time to recover.  Meanwhile, I’m having other medical issues and it all parlays into a miasma of chaos in my head such that I find myself unable to think straight.

Having Multiple Sclerosis just adds to the chaos of all these medical issues and adds to the pain and confusion.

I keep touching on the topic of confusion or chaos.  What I’m saying is that it feels like I’m being thrown against a brick wall over and over again and I’m feeling like no sooner do I get over one bruise, another one arises to take its place.

In reading over the last few posts here, I can see that I’ve spiraled downwards into the pity party that I hate so much.  Yes, I have thrown one.  I never said that I don’t throw one once in awhile.  I just didn’t realize it, until lately, that I was in the midst of one.  Now how can one be at a party and not see the road that took one there?  It’s not a party that I’ve invited anyone to because I already know that people don’t like this type of party, nor do I.  So I wrote myself an invitation and attended it on my own.  I didn’t even invite family members.

When family members ask how I am, I do the same thing I always do.  I bounce off the issues and leave them with the impression that things are difficult, but hey, I can handle it just fine.  What’s amazing to me is that the people who are the closest to me are often the easiest ones to fool.  Why is that?  I think it’s because oftentimes, it is easier to feel that the so-called obligatory phone call, now and then, is sufficient to keep the sense of guilt away at not having touched based with a family member who is chronically ill.  I don’t know.  It’s not my place to guess at what makes someone else tick.  I hate calls like that anyway.

Call me if you have something to say or because you really miss me or truly want my phone company.  Don’t call me just to say, “just wondering how you are and blah blah blah.”   This is probably a truthful sentence from someone who hasn’t been in touch with you for quite some time, but it’s not a truthful sentence from someone who is just a “let your fingers do the walking” away and could be in touch with you within seconds of any day or night.

Do I sound a bit angry?  Yes.  In truth. it’s not a pity party.  It’s more like an “I’m sick of half truths here and don’t throw them my way because I have enough garbage to deal with.

Is this what this blog is about?  No.  My mind is jumping around from topic to topic faster than I can acknowledge that I’ve even had a thought on any given subject.

What’s frightening me is that I’m very much aware of what is happening to me which makes what is happening to me even scarier than it would be if I was unaware of it.  I can’t even bring myself to talk about it right now.  Even if I did talk about it there are so many blissfully unaware insensitive people who will come up with the same inane ignorant comments of things like, “Oh everyone goes through that when they age”, or “I go through that all the time,” or “My (mother, sister, aunt, brother, etc…) went through something like that but then it went away.”

It matters not who the heck has been through it before.  What matters is, have they been aware that they were going through it?  That paints a different picture on the whole story.

I’m going to quit before I dig myself into a hole so deep I won’t be able to crawl out of it. I need a pain pill.  I’m going to take one and hope it knocks me out for a bit.  Perhaps when I wake up I’ll be able to see just 5 minutes ahead of me instead of the rest of my life in front of me living in a condition I don’t wish to be in along with Multiple Sclerosis.

Before everything else that can go wrong goes wrong.