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.

Fourth Wheelchair Ride, Ocrevus and Other Tales

Well, if this is Mt. Sinai, this must be a wheelchair.  Right!  I was scheduled to see my neurologist prior to my second Ocrevus infusion.  She’s on 98th Street and the infusion was on 102, four tiny blocks.  As I have mentioned, I did see a new neurologist closer to home.  She works under the doctor who provided my confirming diagnosis.  I recently connected with someone who had her as a doctor.  She called the 2nd opinion doctor a “robot genius”.

The stopgap neurologist had upped my Baclofen to 6 pills a day. I felt I didn’t want or need it.  I was discussing this with my doctor, Dr. F and how the other doctor was just missing.  I told her about “robot genius” and how I term the new one, “mini robot genius”.  We then had a whole conversation about med students, empathy and humanity. She feels it is lacking in her students.  She  considers me, as her patient, as part of her extended family and it shows. We discuss my signing up for the MS Gym.  Dr. F is pleased with that idea and tells me she has other patients who use it.     She assures me that even though I have deteriorated physically my mind remains the same.  I do feel like me until I try to stand or walk.

Ah, now I have to get over the four little blocks to the infusion.  I used to be able to walk a block in less than a minute in high heels!  I really thought I’d be able to struggle the 4 blocks.  Tom asks Dr. F if we can sort out a wheelchair and go underground.  No problem, she’s on her way out (she came into the office before her rounds to see me) and will speak to Mr. Mike. Mr. Mike greets me near the exit.  I get into the chair.  Tom takes the walker and we are off to the races.  It’s a beautiful autumn day in New York City so Mr. Mike decides to whisk me above ground.  It’s odd to be moving so quickly without any effort. I used to love the feeling of my body whizzing down streets, boardwalks, wet sand.  We are zooming along city blocks.  It’s dizzying.  It’s the speed I used to walk at but now I am in a chair and relatively invisible.  I am invisible until we get to the building and the elevator.  Even though this is an hospital, people get slightly huffy by the elevator.  The chair disrupts the space.  Mr. Mike is a rockstar in this building as he used to work here.  The acclaim becomes even more pronounced as we get to the infusion floor.  Apparently, I am confused by referring to it as an infusion.  In this world that’s for cancer patients.  I am here for therapy.

Tom has been insistent that he will demand Nick, my previous nurse as he knows exactly how to hit my one vein. No, I’ve never had a drug issue but skinny veins.  Nick is not in and I get a new nurse.  She is a compact Filipina nurse.  Years ago, I had a temporary  fill in job with a Filipino family I knew.  I described it as selling Filipino nurses to hospitals.  I was terrible at it but apparently the idea was sound.  C looks at my chart and states I must have a good vein other than the one in my hand that Nick has noted. She gets a heating pad, wraps me up and finds a  vein in my arm.  This means that instead of having a needle in my hand for  4- 5 hours I could have it in my arm.  It makes it a little easier.

I am used to the infusions by now.  Tom gets his fill of HGTV as he sits by my side.  I get uninterrupted reading time.  The problem is that I can’t use the facilities for the infusion period.  Actually, I can but it is involved so I have always held it. Yes, in Uruguay as a thirty something for  13 hours!  Buckets and newspapers and curtains that don’t close, do not work for me.  My luck finally ran out this time.  With close to 90 minutes left, my bladder had it.  I caved.  An expedition was needed -an aide holding the IV pole and me, Tom following behind with the walker.  The fun started when we reached the bathroom.  I do have bashful kidney/shy bladder but we were way beyond that.  The three of us caravan into the bathroom.  Now is the tricky bit – the aide has to leave, the pole needs to be held up and me, too.  My recollection is just of me crying out, “no, no I don’t want to fall.” She is tiny, smaller than my new 5’3″ stature but strong. Somehow we manage to get my pants off and me situated while Tom keeps screaming at me, “Be careful of the IV! Be careful of the IV!”  I walker it back to my chair with Tom holding the IV.  The aide literally left. The rest of the procedure is uneventful.  As usual, the next day I was my usual boiled lobster color.

I did come out of it with a somewhat brighter attitude.  I always get a brief bounce from the Ocrevus.  Plus, I have felt that I was getting weaker.  Dr. F asked if I had had an infection.  Bingo!  Teeth.   There’s hope once more at the bottom of Pandora’s box.

Things Fall Apart

I have always had atrocious handwriting.  I received an A in penmanship first quarter 5th grade.  Both the teacher and my mother thought I had doctored the grade until they realized it was in his handwriting.  I received a D for the next quarter, had to stay after school and had a special book.  Alas, to no avail.  By the end of my first semester in college, my dorm mates said I could encrypt anything against Russian spyware.  I was in trouble my second year on.  My parents, in particular,my father were concerned about my wellbeing – academic and personal.  My father was a writer and an editor.  He was interested in what I was reading and would edit my papers.  This usually occurred after the paper had been graded.   I soon figured it out.  With right amount of charm and angst, I could get Daddy to read the texts and send me notes.  These could then be lifted almost whole and used for a paper.

As I said, my life took a very bad turn from my sophomore year.  However, I did find my groove.  For those of you who have only seen the fashionista side of me, there’s more.  I became excited by African and West Indian studies. Take a deep breath.  My particular area of interest was the syncretization of African religious forms in the colonial world.  Yes, I did spend the majority of my working career in financial training.  I had wonderful, absorbing classes and read amazing things.  I loved it.  I was very excited to be reading Chinua Achebe’s “Things Fall Apart”.  In the ’70’s, it was revelatory.  So, back in the old days, mail was composed via either typewriter or handwriting.  I’ve mentioned my handwriting.  In terms of my typing, let’s just say that I was sent to school with erasable paper, typewriter erasers, Correct-type and tape, and whiteout.  Also, it was back when a telephone call to the next town involved extra charges, let alone another state.  The usual agreement was 1 call a week. Now that I have set the scene…

You might guess where this is going…

I wrote home very excited about Achebe.  My father couldn’t read my handwriting but could see THINGS FALL APART very clearly.  He jumped to conclusions and called me.  We sorted it out.  Hysteria on both sides calmed.  And no, he couldn’t read the novel because Achebe was not available in the Levittown of the 1970’s, nor did I need the help.

Present day, my writing is worse.  I am older but more than that, my hands are impacted by this condition.  Even I can no longer read my handwriting.

When this first started, I would run into people I had not seen in ages.  Three years ago this week, I was let go from a company I’d been with for 15 years.  I was a technical trainer so literally had worked with hundreds of people there in the NYC office alone.  The company occupied four floors of a building that was an NYC block.  I did an enormous amount of walking as part of my job.  I didn’t see some people due to they’re being on different floors and not needing me.  I’d run into someone at a meeting  or in the hall and I would hear, ” Oh my G-d, oh my G-d! What happened?”  My response, a shrug and “Things Fall Apart.”  And no, it wasn’t a stroke or an accident.  It’s not cancer, contagious or terminal.  My brain is the same.

Well, things do fall apart and are falling apart; not colonial structures but me, for real.  I have discovered since summer’s end that my spine is a mess and I have osteoporosis. My teeth were rotting.  I have acknowledged that I am in pain.  I never used to be unless I had fallen.  I went for my spinal surgical consult on Monday.  I was fairly inured to the idea that surgery was in my future.  Two neurologists said it was time. My walking was bad.  I am beyond non-surgical intervention.  When the issue was first raised, I had intense issues.  My dear friend was paralyzed after spinal surgery twenty years ago. I have always been fearful due to that. I also made the analogy that it was either like cataract surgery or laser surgery for the over 40 eye.  In each instance, change would be minimal at best.  The surgeon showed Tom and I, an in-depth section of the MRI.  My philosophy has always been not to look.  Do I know what I am seeing? Can I tell the doctor to do it differently?  This time I could clearly see something was not right. So, this appears to be like cataract surgery.  It’s so bad that anything will be better.  I was told without surgery I will be one of those little old women whose head falls on their chest.  He discovered a fracture in my neck.  I need further tests to see if this is new or old and a better picture.  This is disturbing on several levels.  I fractured and didn’t feel it?  My mother had spinal fractures and they were excruciating.  She literally broke apart.  I am so similar to my mother.  This is not a trait I wish to share.  I was also told I am two inches shorter.  Visions of the Wicked Witch.  I am too young to be melting and shrinking.  I walk worse.  I am fighting as hard as I can to stem and reverse the tide.  But. But things fall apart.

In terms of the surgery I need they can’t say if it will be through the front or through the back.  Two different types of surgery.  The additional tests will tell. It will require an overnight stay.  In anyone else it would have been outpatient.  However, because of my multiple issues, I need to be monitored and physical therapy will have to sign off on my release.  Now, back in the day, a lady only had her name mentioned in the papers three times – birth, marriage ,death. This corresponds to my view of hospital stays.  I am not pleased although I do realize the sanity of staying overnight.  May I be blunt?  I have bashful kidney/shy bladder.  This is almost scarier than any operation. I won’t be able to drive for a couple of weeks due to painkillers. I am the driver for my household.  Scary, huh? And I see another wheelchair ride in my future.  The surgeon is disclaiming all over the place about my prognosis as is my neurologist.  I’ll still have MC and they say it probably won’t impact my mobility.  I remain totally optimistic that I will be improved on all kinds of levels.  If not, why bother?

Things Fall Apart! But… But..

 

Batik and Not Happy

My late ex-husband was prone to spoonerisms. He used to tell me, he liked “batik” women, meaning petite. Of course, I was not batik. Actually, far from it. I was very unhappy so gained weight. I blew up. I left, went to live with my mother and dropped the weight. Ha! I moved in with someone else, unhappy and became heavier. I left him. I lost some of the weight. Then this condition. I changed the way I ate and became the lowest weight I have been in my adult life.

Being a “fashion is my life’ kind of person, I found out that I actually could be a petite size. By the way, a petite size doesn’t mean you don’t weigh a lot, just that you are 5’4” or less. I could be petite in certain things at 5’5”.

A few years ago, I started to buy petite pants because I could no longer wear heels. The line was wrong and the legs too long.  Then I dropped weight and sizes. Things started to and continue to be baggy. But they also didn’t fit.  Things that had when I was much heavier.  Can you guess?  I am soo vain. I noticed things weren’t quite right.  I seemed a little hunched in the mirror.  I didn’t like it which in part prompted my bone scan.

At 5’5”, I have always been the shortest in my family. My mother was told when I was born that I would be able to model as I was going to be tall, at least 5’9”. I felt cheated. My cousin M, a mere 8.5 months older than me was over 6 feet and wore it well. My mother, originally 5’7” shrunk to about 5’. My recent diagnosis of osteoporosis terrifies me. Yes, more than MC(my condition because it is unique).  Yesterday, I went to a surgical consult for needed surgery on my spine. They measured me. I am only 5’3”. I have unwillingly entered the land of the “batik”.

MC, Osteo and Me

Well, the results are in.  I have osteoporosis in my right leg, low bone density in my left and osteo in my spine. This along with the spinal arthritis is just too much.  I am terrified.

My mother had intense osteoporosis and osteoarthritis.  It was sudden and unexpected.  My mother was 79.  I called her  every morning when I arrived at work. The week after September 11, 2001, I rang her and she told me she felt a little achy as she had bagged 11 bags of leaves.  It was completely downhill from there.  As I have mentioned, my mother had an extraordinary tolerance for pain – teeth drilled without Novocaine, childbirth no big deal.  My mother cried and screamed with this.  As I’ve also said, she was advanced for her era in terms of fitness and nutrition.  Some of my earliest memories are of my mother exercising.  Once I started to work in NYC along with her, I no longer joined her for tennis after work.    She was down to aerobics three times a week as she said she vacuumed and gardened.  Foodwise:  Leafy green veg, yogurt or cottage cheese for lunch, fresh fruit everyday, lowfat.

Now my gran was short, plump and very erect so I was hoping against hope that this would pass me by.  I started taking calcium and Vitamin D years ago as a pre-emptive measure.  I walked miles and miles until I couldn’t .  Then I went to the gym regularly till my balance was off.  I modified my diet and do green smoothies most days. Lots and lots of leafy green vegetables. I noticed in the bathroom mirror suddenly that I had a hunch.  And my clothes are fitting my legs differently.  And for certain exercises, my legs seemed out of sync, like one was shorter.

Receiving the spinal arthritis and spine deterioration diagnosis has been devastating and now this! Eventually, I took several deep breaths and did a little research.  Yup, this condition can be the result of the other condition. Lack of exercise and weight bearing can be a factor. Oh, yeah.

Another deep breath and I set up an appointment with my PA (I have all kinds of medical people.  An ever increasing team is necessary). I need this because due to technology I can see my numbers but do not wish to diagnose myself. Yes, she confirmed, I do have osteoporosis and there is medication.  We are rather bombarded with that information – the attractive lady actors extolling the virtues of once or twice a year, oh and yeah, the side effects! Therefore, I realize that there are risks associated with them.  My mother was briefly on Fosomax.  Another funny thing about my mother – she hated taking anything. She took Vitamin E and a multi, something for the dementia, if I recall, and the Fosomax.  You should have heard her complain about how many pills she had to take.  If only, she had seen what I take!  She was taken off Fosomax but I do not know why. The PA said I had choices.  Well, the way my mother felt about pills is the way I feel about needles.  I have a real problem with them.    I don’t like prescription meds.  I prefer another way.  For this, there doesn’t seem to be a non-pharmaceutical option. Well, the Ocrevus is enough infusions for me so those options are out.  Injections are out.  So, what does that leave? The PA doesn’t even hesitate – Fosamax.  I ask her about my numbers and what they mean.  She cannot access them.  This is not confidence making.

A tiny bit more research.  I can rebuild some of the bone. I am in search of an endocrinologist.

In the meantime, I am being gentle with me so that I don’t fall and focus on the positive.

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.