pain

Falling, Falling, Falling

Posted on by tresswann

I have always, always fallen.  As I have previously recounted, I spent my senior year of university on the ground.  I fall when I am upset.  I had a therapist who figured out that I let my feet out from under me, literally.  I fall well because I have had so much practice.  I have also been very, very lucky.  Then we add MC, as I prefer to call it to the mix.  More falling.  Usually, for the MC falls, I know they are going to happen. I start to get an odd sensation.  Or, of course, I trip over something and can’t catch myself.

I fell three weeks ago for no particular reason.  I was on my way to my therapist and ended up on the front room carpet.  Tom couldn’t get me off the ground for almost 20 minutes.  Crawling, chairs and screaming were involved.  I bruised and hurt my hip and had huge bruise on my arm.  On the upside, and if you know me, there is always an upside, I was bruised but not broken.  This means a bit of alright on the osteoporosis.

I vended tea at a psychic fair October 28.  It was a pleasant day and whilst I was in worst condition than I was last year, I was better than I have been.  We splurged and had a lovely sushi dinner and watched a movie.  I was getting ready for bed and Tom was already in. I don’t know about you but my bathroom terrifies me.  Ours is tiny.  The handicapped stall where I used to work is larger than ours.  I have a grab bar by the toilet to hoist myself up or balance as needed.  I was thinking about one last time before turning in when I just fell.  I usually make a little cry before and as I am going down.  I fell really hard and directly onto my rear.  My body knocked the grab bar off the wall.  I landed with my legs in front of me and my back to the door.  In other words, my body wedged the door shut.  Outside, Tom heard me and half asleep in his rush to get out of bed, has fallen on his hip and is having problems getting up.  Of course, he can’t open the bathroom door and I can’t move.  I am in excruciating pain. I think it’s time for 911.  However, based on our previous history, Tom is resistant.  We are both sobbing – me with pain, him with frustration.  With a great amount of pain, I do bend my knees (good sign!) and scuttle forward so he can get in.  I know it takes forever and I know it’s excruciating but somehow we get me onto all fours and then into bed.  I demand my MMJ, Baclofen, ibuprofen, and a Chinese roll-on medicine.  I do sleep.

I am scheduled for an MRI, CT scan and xray for the 29th.  I am the only driver.  It’s literally 3 miles down the road.  Tom has declared in the midst of everything the night before that I’ll have to cancel.  NOT!! I need these tests so that my neck surgery can proceed.  I feel well enough to drive.  The MRI and CT scan are hilarious.  Well, actually not as it involves this young fellow lifting me on and off the tables as I scream.  I did forewarn him.  On a positive note, I did get  a fair amount of steps in.

I have started a new program with the MS Gym plus I do exercises learnt at physical therapy and crunches every night.  It’s so not happening.  I miss my crunches and feel I am like a wicked witch and everything is melting and sliding. My therapist tells me I am a very strong woman. I can agree to pigheaded and stubborn.

Pet peeve:  I HATE,HATE when I tell people I have fallen and they say. “I am so sorry.”  Arghh!  Did you push or trip me?  Did you fail to buffer my fall?  If that is the case then be sorry.  I say I fell because you need this information like for the tests or the dentist.  Saying you are sorry makes me feel pathetic and childlike.  You have nothing to be sorry about.

I continue on and the tops of my hip bones are painful.  No bruises emerge as even though diminished, I have a relatively padded derriere.

The test results are available through the patient portal.  I see “edema” on the report for my lumbar spine.  Hmm, bad fall?  My appointment with  the surgeon is this coming Monday.  This Tuesday evening the phone rings after 6 p.m.  It’s my neurologist, the one who considers patients part of her extended family.  “Susan, have you fallen lately?”  “Yes, two Sundays ago.”  “Has your spinal surgeon called you about your tests?”  “No.” I hear a deep breath and know this is going to be bad.  “Susan, you fractured your tail bone.”  I feel swimmy.  “No, I didn’t.  I bruised my hip bones.”  “No, you fractured your tail bone.  I hate telling you this over the phone.”  I feel like crying and am seriously scared.  Through a haze, I hear her tell me that it’s not uncommon; it doesn’t require emergency care and my approach has been the right one.

Now, my question is, I have had the results for a week.  Why didn’t the ordering doctor look at the results and advise me?  Waiting till Monday? I rang them and the PA called me back.  Oh no worries, just do what feels  right. Methinks, I need a different surgeon.

On the upside, it’s manageable and once again, no breaks.

Using Herb aka Weed, Ganja, MMJ

Posted on by tresswann

I grew up with a mother who had a very high pain threshold.  She thought childbirth pain vastly overrated.  So, that informed my view of pain. In the past, I used to get laughing gas and Novocaine for cavities.  Of course, my mother considered me babyish for this amongst other things.

Some years ago, I started having major issues with my teeth.  In fact, I attribute dental problems for unleashing this in my system.  I had Vicodin.  This was before the pain I am currently in.  My neurologist said it was addictive.  I don’t care.  I do not have an addictive personality. Despite years of denying my mother’s assessment, I confess; I am a control freak.  I, especially do not like anything to be in control of me – people, jobs, drinks, drugs.  I would have managed it.

I also don’t prefer using medicine.  It’s another thing I grew up with.  We only took aspirin with real fevers.  I carry that with me to this day.  When this journey started, I rejected all talk of drugs.  As things progressed, I broke down.  I now take Ampyra, Baclofen and Ocrevus along with high dose Biotin.

I read Megan Llewellyn’s journey with MMJ and was encouraged. People began to talk about it  in a more public space.  People also began to personally suggest I start smoking.  I saw people online walk again.

History:

Let’s tackle actual cigarette smoking, first.  I always thought it most unattractive and senseless.  When I was about 10, I told my at-the-time smoker parents that I thought it was stupid.  This was in the day when there were still cigarette ads and commercials.

I became older and thought it nasty and smelly as well as ugly looking.  All that being said, I found myself from my junior year university finals puffing away during that period.  Only at finals.  However, my senior finals were stressful.  By this time, my parents had stopped smoking.  The first week I was home, I found myself blowing smoke outside the bathroom window.  The control freak emerged.  How could I be smoking like this after only three weeks?  I am my mother’s child and stopped.  She decided one day to stop smoking and she did. After college, the next time I smoked was when I was losing a beloved job.  I had a corner office on a high floor of the Empire State building.  It was back in the days with ashtrays and windows that opened.  I used to have my assistant go downstairs and buy me a pack of Eves.  I remember one of the sales managers coming into my office and saying it smelt of smoke but you don’t smoke.  I lost the job and stopped.

Alright, next, actual marijuana and hashish.  Okay, I am a child of the 70’s.  The first thing that stopped me was (see above) smoking is ugly.  By the way, so is snorting cocaine. In the town and era I grew up in, alcohol was considered better than weed.  Parents had no problems if you were drunk but stoned?  It was around me but not for me.  At college, many of the pre-meds stayed away due to med school.  I had a truly horrific sophomore year which culminated in academic disaster.  I returned for my junior year with enormous tension and stress.  My college boyfriend prescribed pot.  On one of the better days of my sophomore  year, one of my roommates decided to see what pot  was all about.  We enlisted the help of two guys who are now nuclear physicists.  She is also a prominent doctor.  We smoked somehow and became really, really high though we didn’t know it.  It was one of those spicy, inviting spring evenings and we gadded over to her boyfriend’s fraternity house.  He has had fairly prominent political and legal roles, including judicial.  See, I have always known I am the least successful member of my college class.  Anyhow, the two of us stood in the street bellowing for him to comedown.  Wisely, he didn’t.  So, it’s the start of junior year.  I still hate smoking especially in front of the opposite sex.  My boyfriend (significant legal position) eventually brings a hookah.  The bong did not work for me.  Two – three weeks in, Miss Control Freak surfaced again and determined to need something everyday was not in her best interests. After that, only if I drank. If I drank and smoked on a Saturday, you could scrape me off the ceiling on Wednesday.  My last bout for years occurred during senior week festivities when I locked myself in (name dropper) a guy who became a local broadcaster’s closet.  I have successfully avoided him for years.  Thereafter, once a decade ending on Good Friday, 1994.

Before I certified, someone gave me caramel gummi bears with CBD/THC.   I have to channel my father who always said you never knew what you were going to get.  They were uneven.  They definitely relaxed  and calmed me.  They satisfied my sweet tooth after dinner.  My muscles were looser.  Sometimes, I would get higher than other times.  Control!

Someone else provided me with actual weed .  I coughed, my chest burned and I aced the stairstepper.

We were told about a CBD/MMJ Exposition east of us.  Well, it was in an industrial area.  Definitely, stoners.  Not only was I the oldest, but the lamest,  However, I felt like fresh meat.  They didn’t want me to leave.  And no, I wasn’t going to put CBD oil on my tongue  for the hour drive home.

I met someone at my father-in-law’s funeral.  She told me that the legal MMJ was expensive and you couldn’t get high.  Uh, see above.  Not my interest!

I am of Jamaican ancestry.  Marijuana is herb aka ganja. It is definitely medicinal, if not religious. I like the idea of using herb instead of pharmaceuticals.

I went to my primary.  He certifies you for $200 cash.  Clueless, it’s just about the money. He wrote me a fairly open ended prescription – no monthly limit, no specific kind.

In New York , there is no weed, edibles or lotions.  Options are: pills, vaping and sublingual oil.  Guess what I chose?  Well, not vaping.  I chose the sublingual 50/50 CBD/THC oil to start.  It’s cash only. For me, this means over $100 a month.  It did numb my pain. I am mildly less tense.  The first month I was taking it 3-4 times a day.

Last month, I decided to up the THC and went to 75THC/25CBD oil.  This I decided to use maybe once a day.  I was warned about the side effects – sleepy and munchy.  NOT.  I get a little thirsty.  I haven’t noticed a discernable difference between the two .

My husband gives it to me from a dropper.  I feel like a baby bird, opening my mouth for nourishment.

I take Baclofen and recently my dosage was increased.  I started with an extra pill at night, no effect.  One night I took the higher THC.  I just about passed out during one of my favorite programs.  My husband, “That’s it! No more THC for you!”  We figured out the next day that it was the Baclofen combo.

I was gifted with the real deal.  It relaxes me but I hate smoking and feeling high.

What did I expect?  I wanted increased flexibility, energy and stamina.  So far, it’s not working.

What has been your experience?

Suggestions?

New Neurologist Visit

Posted on by tresswann

I adore my neurologist, truly.  I have been involved with her since the  beginning.  She was a fellow observing my initial doctor.  When she established her practice, I jumped at the chance.  She explained Zumba and WII to the original doctor.  I have been with her since 2008.  Her philosophy meshed with mine – sometimes a fall is just a fall.  I have always fallen every time I am upset since I was young.  I spent most of my senior year in college on the ground.  The upside is I know how to fall.  I have been told, as much as something like this is possible, that I do it gracefully.  She said if I wanted to wear kitten heels it was fine as long as it was safe.  Personally, she didn’t understand why anyone would want to wear heels.  We email each other.  She practices in a multiple sclerosis institute.  This has given me access to cutting edge research and care.  We agree to disagree on what is inevitable.  In recent years, she has been saying I need to recognize this.  Inevitable is a word I disagree with.  Maybe I am in denial, however, inevitable implies defeat.  Defeat cannot be an option for me.

The Institute is located in NYC and I usually go by train.   I have weakened so that isn’t really possible.  I would have to take car service for hundreds of dollars.  Well, I really haven’t worked in three years so that is an issue.  I did try and get transportation through health insurance.  I jumped through hoops.  I have had my primary care doctor send one form three separate times.  My neurologist is considered  out of area.  However, continuity of care is not considered a valid reason.  Really?!  I have a chronic illness and was being seen by a renown  doctor for 10 years in an Institute dedicated to my condition.  I participate in research there.  This was not good enough.

I found there was an Institute, driveable from where I live.  Problem – this is where I had my second opinion years ago.  It was horrible.  The doctor literally forgot I was there.  When she saw me, she asked what I expected of her.  An f*ng miracle?  At the end when I asked what I could do and was told to live a good life.  I voted with my feet.  It would have been closer and easier. She was an alum of my uni.  Even though I prayed when I was 18 to never get sick so I would never have to deal with any of them, I tend to pick alumni.  She exemplified all the reasons why not.

So, I was faced with returning.  When I rang, I was specific that I did not want HER! Surprised! They made it with someone else.

It started off well.  I was taken more or less on time. There was even an apology for the 10 minute delay.  None had been offered at the time of the hours long wait when that occurred. It went downhill from there.  One of the things my husband and I have been concerned about has beenmy increasing pain.  The medical herb is just numbing it.  I even had to fill out a questionnaire about my levels of pain.  Nothing!  And we asked more than once during the course of the visit.  The closest we came was a suggestion to try different combinations of the medical marijuana.

I brought all three spectral legs, including Frankie.  I indicated the problems with Frankie.  Again, nothing! Onto the chariot aka the rollator.  I self-prescribed and bought mine on Amazon for $25.  I need something different.  “Your physical therapist can do that for you.”  Really? And PT?  She wrote me a scrip for her office, over half an hour away.  Tone deaf!  Diet?  Exercise?  No comment. Call me dissatisfied and back  to the drawing board.

Oh and let us not forget the Ocrevus.  I am scheduled for October 4 in NYC.    Yes, I can get it with her but my husband probably can’t be with me and I’ll be in a circle with 5 other people.  We want a hospital and a semi-private setting.

The only thing I did get is an increase in my Baclofen.  More on that in another blog.

She didn’t even ask me for a return date.  Guess the feeling was mutual.

I feel defeated as I don’t think I’ll be able to go back to my doctor.  So, another stressor, how do I find the care I need?

Look, Ma. No Pain. Teeth

Posted on by tresswann

My mother had an extremely high tolerance for pain.  She used to have her  teeth drilled without Novocaine.  She also claimed that childbirth pain was vastly overrated.  Period pain and cramps?  In your mind.  She worked with someone who had to take Percocet monthly and Ma just disdained that.

Me?  Cavities- I used to get gas and Novocaine!  Teeth cleaning – numbing agents.  I was so not her.  In fact, when she finally admitted to pain with osteoarthritis and osteoporosis and cried, I was terrified.

My husband also believes that pain is mostly in the mind.

In the last 6 months or so, I have been in pain but due to my upbringing, not really acknowledging it.  Following my mother’s  lead, I have just looked at it as part of my new reality.

I started taking medical marijuana a month ago (more in another  blog).  My impetus was based on hearing people report improved mobility.  Yeah, I mentioned pain but just to justify the prescription.  Guess what?  I found that it numbed or lessened my pain.  My right leg is the one most effected by this condition but my left knee feels like it is a football.  Even with the MMJ, it has been a constant throbbing presence.  I have been unable to concentrate.  It has impacted my ability to do everyday things.  Some days everything just hurts.  I am my mother’s child.  I soldier on.

One of the areas that has been hurting is my teeth.  I have had two huge holes in my teeth.  I chipped a tooth a couple of months ago and it has just rotted away.

Let’s talk about teeth and my condition. Due to losing my job (I didn’t lose it; they let me go), I found myself with  a huge open hole in one of my teeth.  I thought I couldn’t afford to do anything about it as I was trying to keep three households afloat on unemployment, severance and savings.  I am convinced that this was the gateway in for my condition.  I did have a huge infection.

I had my first cavity at 18.  My great-aunt lost her first tooth at 92! As an adult, my teeth continued to deteriorate and I have had root canals, crowns, implants and extractions.  With one of the first extractions, I was given Vicodin.  Amazing!  I was still going to Zumba and did really well.  I taught a class that literally always gave me a headache with no stress.  I told my neurologist.  She laughed and said it was addictive.  I said at my age, “Who cares?”  She gave me Baclofen.  It didn’t hack it.

I went to the dentist a few weeks ago.  I allegedly have dental insurance through ACA.  According to that dentist, most of my mouth needs extractions and  root canals.  Of course, insurance either denied or referred to a subpar clinic.  Once I acknowledge my mouth, I take care of it.  I have learned the hard way that dental is not the place to scrimp.  I headed back to my favorite, expensive oral surgeon. My MMJ supply is also running out and I need to go for a refill. My thinking was that I could make it till next week because I would get Vicodin.  Well, he took out three teeth last night.  Two next to my upper front eyetooth.  No Vicodin!! Just regular ibuprofen.  This surgeon is excellent.  No pain.

Of course, me being me, I went for sedation.  So, last night, no pain, just blood.  And in addition to the Vicodin, I have been looking forward to antibiotics.  I know I have an infection running amok in my body so drugs will kill it.

The brilliant thing is this morning I woke with NO PAIN! NONE!  Not my legs, not my head, not my shoulders, not my teeth.  I am walking more freely. I can almost type the way I used to.   I can actually concentrate!  Bad news is this probably won’t last.  How can I get this effect legally, cheaply and regularly?