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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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.

Then What?

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

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

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

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

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

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

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

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

Then what?

My Take on This

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

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

A Freezing Day With Botox

15704I went in to see my neurologist about six months ago and I complained about my head dropping down and/or over to the right.  I was always looking down, in either case.  I would sometimes bump into things because I wasn’t looking forward.

It was decided that I should have botox injections and I believe I wrote about this earlier in the year about the horrible effects it had on me.  My chin was pinned to my chest.  It took three months of a gradual wear off before I could lift my head up again.

My neurologist was flabbergasted.  He said he gave me an extremely low dose of it.  Botox works on the muscles in the neck the same way as they work on the face.  That’s why oftentimes, people who get a lot of Botox injections for cosmetic reasons, have a tendency to have a frozen look about them.

My neurologist thought that I was super sensitive, as we both were aware of, due to years of experiences we had trying out different medications for relief of symptoms for me.  It became clear that I was extremely sensitive to certain types of drugs and to others, I was not sensitive at all.  In fact, the ones that I wasn’t sensitive to, we upped dosages many times and finally tried something else because of the drugs inability to offer relief, in my case.

It was an extremely difficult time for me not only physically but emotionally.  I was afraid to go out anywhere knowing that I must appear strange to people.  I already knew that people could tell that I had some sort of disability but this was like me screaming in their face, “Look at me!  I’m a sick gal!”

It was a relief to me when my neurologist decided that I should see a neurologist who specialized in giving these types of medications with specialized guided equipment.  This was an inconvenience due to the distance to travel but it was a relief knowing that I was in good hands, at least I hoped I was.  As it turned out, my hopes were realized.

The injections were given when the machine made these strange ticking sounds suggesting to the neurologist that it was the right location.  The dosage was also decreased as well.  However, it didn’t seem to me that the number of injections was less.  Unfortunately, this Doctor has moved away and I don’t know if anyone replaced her or not.  I just know that I don’t want to have to travel that far if I can help it.

Over time, the predictable happened.  I was back to square one with my head.  Correct that.  I am now back to square one where I look like I’m walking as though I should be carrying one of those metal finder machines panning for treasures.

My neurologist and I looked at each other this past week or so and realized that we were going to have to try again without the advanced technology.  When he and the nurse prepped my neck, they felt the muscle that they thought was the culprit.  It was, in their opinion, way too tight where the other ones were stretched out.  The neurologist assured me that we were going down even less in dosage and that hopefully, we would do okay.  HOPEFULLY?

Everything went well and I held my head as high as I could for the next several days in the hopes I could raise it even further in another few days.  Not.

I am so frustrated and disappointed.  I just want to howl at the moon.

I noticed that my head felt heavier and heavier as the days progressed and then I realized, oh no—my head is freezing again.

I woke up this morning and sure enough, I could barely lift it again.  It will get worse before it gets better.

I am not going to put a “nicey nice” spin on this article.  I’m angry, frustrated and sad.  It’s pointless and serves no purpose whatsoever but it’s how I feel.

I spoke to my Doctor’s nurse this morning to report the situation to her and to cancel my appointment with him in a month because I just happen to be  going in for a major 2-Doctor surgical procedure at about the same time.  My cup runneth over!

I told the nurse the situation about the botox and she said, “But we lowered the dose!”  To that.  I replied that I knew that I was not a physician or a nurse, but it is apparent to me that it’s not the dosage but the locations they choose to give me these shots.  She felt bad and told me she would let the Doc know and we hung up.

images (1)Come on folks.  Don’t you agree?  I don’t know.

I’ll get back with you when I’m in a better mood.

Isn’t this a first?  Maybe not.  I wrote a bitchy blog.