Falling, Falling, Falling

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.

Bone Density Dressing

Clothing is my life.  Shallow, sad but true.  My mother announced when I was 10 or 11 that she could tell that I was going to be a clothes horse when I grew up.   She said this resignedly.  I had no idea what she was talking about and I definitely didn’t like horses.  I have always been my grandmother’s child, so there it is – life defined by what you wear. Grandma could tell you all about the lavender dress she wore when  her father’s will was read.  I can remember what I wore when going far back.  And no, it’s not  because it’s memorialized in pictures.  I remember what I bought, when and usually how much it cost.  One of my first paychecks went to a pair of Bobbie Brooks brushed denim bellbottom blue jeans with camel stitching.  I wore this for my first week of college with  a beige ribbed turtleneck. I wore a plum shantung dress with a full skirt and short jacket when I was 10 to see “The Brothers Grimm” with my aunt in NYC.  Oh, and yes, of course there were short white gloves.  See what I mean?

I dress for the occasion. For my initial appointment at Mt. Sinai I believe I had on a hunting jacket and black skirt.  I definitely wore black leather 2.5 inch heels. When I had my first MRI, I went locally and was told no metal, no bra with hooks.  So, sports bra, sweatshirt and sweatpants.  I hate being seen that way unless I am at the gym.  At Mt. Sinai, it’s not an issue as they want everything off and provide gown and pants.  It’s slightly hilarious as it’s one size larger fits everyone and I can’t wear the spectral leg.  Last month, I had to have the MRI locally again.  It was really hot so I wore an Old Navy  navy blue sundress with turquoise embroidery, no bra.  And nothing showed!  Ahem, I can “protrude”.

I decided after the MRI came back with spinal deterioration,  to get my long delayed bone density scan.  It came with the now familiar no metal  caution.  What to wear?  My plan was my Sudara blue/green pants with a green tank top.  Overnight, it was fall.  No sundresses and bare legs.  Here’s the thing – I  can’t do the sports bra thing anymore.  I am not strong enough.  Tom gets too frustrated helping me get them on and off.  Wow, have we aged! So, a totally discombobulated outfit ensued.  Track pants, a Coldwater Creek sleeveless black top with tiers (to hide the “girls”) and at the last moment a grey knit poncho because it was so cold.  On my feet, the spectral leg and my Jackson Pollack influenced splatter sneakers (Target, $11.99).  It all made me feel horrible, like an old bag lady.

The scan took place in the Women’s Imaging Center so no help from Tom.  Great news!  I didn’t have to remove the spectral leg or the sneakers.  Getting me on and off the table can only be described as fun.

Mission accomplished.  As we stumble out to the main area, the tech comments on my great sneakers.  My take on shoes is not to appear handicapped.  I hate those big galumphous black shoes you are supposed to wear.  The sneakers are something I would have worn in my old, “normal” life.  I can’t say that for all my shoe compromises.  Many times, it feels patronizing when people tell me how they like my shoes. IMG_2055 I know, I know; it’s the effect I strive for.  I am not sure how often people say this to able-bodied people. The tech and another one wish they could wear ones like that.  They are not allowed.  They must wear all black including shoes.  Their feeling is that being able to wear color would help both them and their patients. I agree.  There’s a difference between being professional and being somber. We all need to dress for the occasion.

The Theory of the Universe, Bugs, Mobility and Me

I had a friend whose theory of the universe is:  Women have periods.  Men kill bugs.  An equitable distribution of labor.  However, this is not always possible.

I shared a summer beach house with a cheerleading squad and their male entourage.  Full disclosure:  I am not, nor ever have been of the cheerleading species.  We returned from a drunken evening to a seven year locust.  The guys fled the house leaving the squad to deal.  And as women do, someone took a cup, placed it over the bug, slipped a plate underneath and ran to the door and released it into the night air and the guys.  Of course, this was done amongst much screaming.  My role? An interested observer , ready to bolt.

Years ago, I returned to my apartment around 10 at night to be greeted by a cicada.  I called my father.  “What do you expect me to do?”  Uh, fulfill the unspoken contract? Next step,  call the originator of the theory .  Her advice, which I had used before was vacuum it up.  So, amongst much hysterical screams, vacuumed the cicada in the living room and barricaded myself  in the bedroom.  Next day at work, my manager asked why I was looking so peaky.  He told me that vacuums don’t kill bugs.  Now, this was a man who was such a tease, his children tried to smother him one evening.  Could he be right?  Yes.  I came home and it had just about crawled out.  I ran the vacuum for over an hour and smothered that sucker.

During my first, ill fated marriage, I started to grow  out my dark brown hair.  It was at the point where it could barely be put up and it would fall down.  I love to read, especially in the bath.  I was upstairs in the bath with the latest Patricia Cornwell.  Outside  the corner of my  eye, I see something brown. My hair?  NO!!!  Movie spider. SCREAMING!! Jumped out of the tub, dropped the book, grabbed it and levitated out of  the room.  Husband  comes up.  No big deal. NOT!!

So, you see bugs and I don’t agree.

It’s been weird weather, hot and damp.  This has caused an influx of spiders, little ants, crickets.

I am also a clutter person.  I have all sorts of little piles.  My planner with all sorts of papers sticking out is on the floor next to the desk. I also don’t see really well.  It’s that over 40 eye thing.  I amble into my office room and there is a creature sticking out of the planner papers, a big creature.  Something with a body.  I don’t kill things with bodies (see above and theory of the universe).  I cannot clearly see the creature nor can I tell whether it is alive.  Next problem:  Usually when confronted with a situation such as this, I scream or whimper.  Tom is asleep in the next room as it is early morning.  I also scream/whimper when I am falling or losing my balance.  This usually causes him to come running to attempt to catch me.  It’s not pretty as he is a middle-aged man with asthma.  So, I am struggling to suppress my urges and inclinations.  Next, my natural inclination is to run.  Uh, but I can’t.  At this point, I wall and furniture surf, not even walk. Picture me, trying to get out of the room quickly without alarming anyone, i.e. Tom.  And why aren’t those cats earning their keep?

Tom does wake up and dispatches the cricket which had been on its back.

However, something as simple and silly hits me hard.  I have to come up with a new bug strategy. Another side effect of the mobility issue.  I am still holding to the theory of the universe.

Define, Confine, Shopping and the Web

My father’s two sisters, my aunts,  were obese; one morbidly so.  The elder had diabetes early on and lost her toes.  Aunt E had lost lots of weight but being a member of my father’s family did not believe in exercise, light or fresh air.  She had all this loose flesh under her arms.  As a child, I loved to scrunch it up and play with it. She died when I was a freshman in college. Aunt L, the younger, was morbidly obese.  She was 4’9 or 4’10” and over 300 pounds.  When I was little, she always told me that next year I would be able to sit in her lap.  That never happened. She was straight from top to bottom.  Indeed, she became larger.  As I became older and she became larger, she no longer wanted to see me. I was thin and healthy until college.  My parents never let me think I was as they were terrified I would take after the aunts.  I kept on assuring them that I loved clothing too much for that to happen.  I also liked boys and people.  I had seen what it had done to the aunts. Yes, from time to time, I have used weight as a shield but only a temporary one.  I like being  part of the larger world too much.  I worked in fashion and finance.  This is not to say that overweight people do not work or succeed in these industries but I was and am consumed with my appearance. I also am my very own person and early on had determined that I was not going to live anyone else’s life but my own.

After Aunt E died, Aunt L did lose some weight.  However, following the paternal family inclination, she never ever exercised.  The loss coupled with her height resulted in a medically necessary operation which removed 75 pounds of excess flesh.  After being smug for years that she didn’t have diabetes, it hit with a vengeance.  Her eyesight went.  Aunt L had lots and lots of issues.  This is also around the nascence of the Internet, the change in fax machines and increasing frequency of phone orders.  Aunt L found it possible to stay inside most of the time and order most of what she wanted and needed for home delivery.  My mother often said that with the increasing ubiquity of the internet, Aunt L  would never have had to leave the house.  My mother didn’t live to see Amazon.

I was told when this journey started that diabetes was an autoimmune condition.  Hmmm.  I was quite determined when this journey started that I would not be confined or defined by this condition.  I was adamant.  Well, easier said than done.  The almost 10 years since this has begun to afflict me has seen significant changes.  I obtained the “spectral leg”.  Initially, I only wore it to and from work.  I worked in NYC and commuted through Penn, Times Square and Grand Central Stations daily.  I used to wear it on the outside so it would be a visual clue to people that I might be slower or a bit stumbly.  I still mourn my black leather pants – spectral didn’t work with them.   I still wore  heels at work, just not the 3.5 – 4 inchers that I liked.  Then I started to have to wear spectral all the time.  New shoes were called for.  I wore “crazy” sneakers, lacy oxfords and mary janes.  It was not me but afforded a modicum of style.

I started to use a cane.  Again, as with the spectral leg, initially it was a visual clue.  A fellow commuter used to tease me that he was waiting to see me whack someone with it.  And again, per define  and confine, my canes are seasonal – summer is a pink floral, fall a rich paisley, winter and evening shimmery silver grey.

I started to find it harder and harder to do things other than work.  I hated the perceived pity people had for me.  On the flipside, I hated, hated, hate being inspirational.  I am me and this is it. I was let go from my job.  The world started to become narrower as I wasn’t up and out every day.   I became dependent on the cane, rejected the latest incarnation of the spectral leg currently known as Frankie for Frankenstein.

Then the walker which I haven’t decided will be known as either the gladiator or the chariot became how I need to perambulate outside.  I am considering Washi tape.  And the world shrinks yet again.  Grocery shopping fills me with dread.  The combination of a heavy cart and a poorly graded parking lot sees me relinquishing my list to my husband and sitting in the car.  Recently, at BJs, the greeter has been offering me the motorized cart.  I decline it as Tom and I have visions of my knocking down piles of groceries and children as I speed along ( I do like speed), forgetting or unable to brake. Lately, I am having enormous difficulty getting back into my home via its two little front steps.  It involves swinging my left leg to build momentum and then using the railing to haul myself up.  That’s on a good day.  On a bad day, it’s Tom arranging my legs which stiffen and hauling me up.  Not pretty.

One thing that I have had is the ability and knowledge to sooth myself.  I read.  Reading has always been my drug of choice.  For several years now, I order books and Tom runs in, picks up and drops off at the library.  Did you know there is a version of HIPAA for books?  I had to sign a form so that he can get my books.  I craft and calm down.  However, I haven’t been to Michaels Crafts for months.  I received an offer last week for 40% off online delivery and in-store pickup.  And yes, I could designate him to pick up.  He picked up at the library and then picked up at Michaels.  Easy.  Too easy!  I flashed back to Aunt L.  What happened to not confine and not define?  I have goofed, big time.  I don’t want to hear about you are doing the best you can or you are doing so much better than other people. Not a viable option.  Yes, it limits me.  It can confine me if I succumb.  Other people can decide to define me but that’s on them.  As I made up my mind when I was small, I need to live my own life.  I have to remember this and confront and overcome.

Learning New Words – All this and Arthritis, too?

I recently went to a new neurologist as I physically could not manage commuting in to NYC (see New Neurologist Visit).  As a result, I had to have a new set of MRIs.  I expected the usual “There’s been no change, blah, blah, blah.”  Last year, my neurologist told me that but mentioned I had spinal arthritis, quite normal at my age.  From the get go, Dr. F had said I might want to consider spinal surgery.  My first thought, years ago, was pure, utter terror.  I had a friend who on Thanksgiving Friday 1998, found a lump on his rib cage. He went to the ER that day and it was determined to be cancerous. Another lump was found on his spine.  It was operated on.  By 9 December, he was paralyzed.  His funeral was Memorial Day weekend.  When Dr. F broached the possibility again in 2017, she said it could possibly help but I would still have MS.  My response to her was that I have been told that I am an ideal candidate for laser eye surgery.  But…there’s always a but.  I would still need to wear readers because of my over 40 year old eyes.  What’s the point?  Would my mobility change?  I voted  no.

Despite my expectations, the new doctor left a message that she wanted to review my test and MRIs.  I had already received a call on the blood indicating that my B12 was a little high.  I’ve had that before.  The nurse also said my cholesterol was a bit high.  This was unusual and mildly alarming.  However, my husband’s was also high.  Aha, we had made three batches of Pati Jinich’s homemade cookies in a week and a half.  When I go off the rails, I do it definitively .  The cookies are made with three and a half sticks of  butter; in other words just about a pound and a tin of condensed milk.  I actually thought Dr. M was calling about my urine test.  I didn’t do it at the lab.  The last time I did one was at my gyn NP’s as we were fairly certain I had a urinary tract infection.  Hilarious is the word that comes to mind.  Not to be too graphic but it was challenging to collect, not fall or spill.  I also have bashful kidney or shy bladder. The lab was not happening.  They gave me a specimen jar.  Next, my husband would have to carry it it in.  My middle initial is P usually for Perfick! But all too often  Procrastinate.  We finally got it together along with a little brown shopping bag for Tom to carry it in.  LOL.  I truly believed and feared that I had something urinary/renal going on.  So, the phone call.  My blood is as previously indicated.  My urine is FINE!  Really? Really. However, Dr. M tells me that I have spinal arthritis.  Yes? But.  I have badly herniated discs.  There has been significant deterioration.  I hear the words “spinal surgery”.  I close down and tell her I have to discuss it with my husband.  This is just graceful politeness.  I always make up my own mind.  I am known for consensus and collaboration but I always, always make up my own mind.

Technology is a wonderful thing or maybe not.  Dr. M has said she will send me the report.  However, there is a patient portal.  I go on it and pull up the actual MRIs.  They are so ugly and so not me.  My philosophy has always been “I am very good at my job.  I know it.  I expect you to be very good at yours.  You don’t know how to do mine and I don’t know how to do yours.”  I used to argue with a friend of mine who wanted all the exact details.  Why?  Can you tell the doctor/hairdresser/dentist, “Wait, that’s not the right way!?” I do open the written report.  I am good at words.  I don’t like these. I pull a Scarlett O’Hara and “I’ll think about it tomorrow.  Or next week.” The report actually makes a kind of sense.  I have been deteriorating almost daily.  No one wants to acknowledge it, including me but there it is.  Spinal deterioration at least provides a rationale.  This, then leads us to spinal surgery.  Tom assures me that things have changed and it’s been almost 20 years since my friend had his.  Laser surgery is now common.  I read the report again.  Basically, it says that there has been no additional demyelination; no increase in plaques. Actually, there has been no increase in plaques since this started. However, I have significant myelomalacia(new word!) and nerve impingement.

I am going to get a surgical opinion.  I am terrified of it but what’s the worst outcome?  I can barely walk now.  My mother developed intense osteoarthritis and osteoporosis seemingly overnight.  So, this diagnosis also makes sense in that light.

It’s always something.  Once again, I find myself being my own care coordinator.

Has anyone else encountered spinal stenosis and had a positive surgical outcome?  Or is this going to be like cataract surgery and because I’ve reached this state of deterioration, anything is an improvement?

Using Herb aka Weed, Ganja, MMJ

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

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?