ampyra

Define, Confine, Shopping and the Web

Posted on by tresswann

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.

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?

Failure and Rising Again

Posted on by tresswann

I did not make it to the Black/White Masquerade party.

I did attend my tea.  I was relatively sedentary.  My friend did help me walk around the room.  With her help, I successfully bid on a Luau basket.  I guess there’s a party in my future.

The problem started because the car was parked much further than usual.  It took me about 15 minutes, easily, well not so easily, to get to the car.  I arrived home later than planned.  I was totally knackered but put my feet up.  I began to modify my plans – touch up makeup instead of redo; leave hair as is and not swap to hair ornament, leave Victorian knee highs on.  I did contemplate staying with the floral sneakers but really wouldn’t work with black chiffon skirt.

Next, I had a problem pulling the skirt on.  As much as I dislike it, it has an elastic waist.  Comic but not, seeing Tom trying to pull it on for me. Then I tried to stand up and gracefully collapsed into the chair.  Then I did it again.  It was scary.  I realized that the mask was still upstairs; the cards weren’t signed.  It was overwhelming.  I just couldn’t do it.  I hurt.  I was weak.  I would not be able to get there until much later.

I have always believed in a cost benefit analysis.  If I had to go to work in seriously bad weather or snow, I always did this.  Sometimes, I went; sometimes I didn’t.  Well, CBA on Saturday, said it wouldn’t work.  Being so collapsed, I would not be safe driving.   I would barely have been able to walk.  I was devastated but cancelled at the last minute. This is so not me.  It was always a joke when I was much younger that I was always up for a party.  For awhile, my nickname was Flash because I was always ready in a flash.  Nor did I let sickness deter me.  I recall a dinner dance cruise around Manhattan in the 80’s with a 102 fever body suit with wrap skirt, shawl and glitter.  Everything glittered for me that evening.

I was bitterly disappointed this past Saturday.  Firstly, if I had been able to go I would have needed the walker.  Secondly, that I wasn’t strong enough at all to go. So, as per my usual Joe Palooka doll self (you know the children’s punching bag toys that you hit and they bounce right back), I decided that iit’s time yet again to amp things up.  I have started the MS workout program.  If I stick to it, I should get results.  I am going to push more on a daily basis for more steps.  I will get outdoors this summer.  I refuse to bow to defeat.  My plan and goal is for this to be the last event I lose to this condition

Heidi, the Super Bowl, Secret Garden, Pollyanna and Me

Posted on by tresswann

The SuperBowl has been on my mind as it has recently passed.  My family weren’t football fans but totally baseball mad.  Tom watched it in full for the first time in decades.  Anyway, my mind was just drifting along and I remembered “Heidi loves the Super Bowl”.  Yes, you have to be of a certain age to remember and appreciate that bumper/sticker joke.  I was one of the children breathlessly awaiting the broadcast of Heidi.  I don’t recall the exact details as I was a child and football not a religion practiced in my home, but it was at some critical juncture in the game, that the network cut over to Heidi. It must have been around 7 o’clock and of course, on a Sunday evening I was one of those children who adored Heidi.  It was one of my favorite childhood books.  I would not have been allowed to stay up late on a school night.

Heidi

Heidi’s story, as filtered through memory – Heidi is a miserable child and sent to live with her grumpy, mean Grandfather in the Alps.  He forces her to go outside, play,  herd goats and get apples in her cheeks.  Somehow, she encounters Klara, a young sick girl, who reading between the lines, is not expected to last long.  Klara can’t walk either.  Heidi enlists Grandfather to do for Klara what he has done for her.  She drinks  goat milk from the herd. And with exercise, good air and clean food, Klara is cured and can walk.  More or less.  It’s been decades.  I  shall have to gimp upstairs to my childhood shelf and have a read.

secret garden

One of my other favorite books as a child and yes, just a plain favorite is The Secret Garden.  Again, the condensed via me version:  Mary is a miserable, spoiled brat baby and sickly.  She is sent to live with her uncle in England.  Again good air, good food and a new friend lead to a change in her.  She discovers her cousin Colin hidden away – bedridden, can’t walk, not expected to live.  Good air and food plus exercise and he walks again.

My parents used to tease and call me Pollyanna  or Rebecca of Sunnybrook Farm.  No recollection  of Rebecca but a memory of the film Pollyanna with Hayley Mills.  I did want to be Hayley Mills.  My recollection is that Pollyanna is a positive child, gets ill, loses her ability to walk; in this case she doesn’t get to walk again but everyone loves her more.  No memory of Rebecca except that she was cheery.

So, where is this leading?  I have been steadily deteriorating over the last few months.  I have attributed this to bad eating and lack of activity.  The last week has been particularly brutal.  My doctors have pooh-poohed me.  It’s the nature of the disease.  It’s supposed to progress and it is.  There is no cure at this time and it is inevitable.  From day one, I have never bought into that.  I do believe that food and notjust “eat healthy” impacts walking.  Not walking and being as active as I used to be takes its toll.  It’s a vicious cycle – less activity, more fatigue, more stress, less activity….   Eating needs to be tweaked and healthy is relative.  I am still sorting it out,  But do not, do not tell a woman who has metabolized Heidi and The Secret Garden into her DNA that she will not walk again and wheelchairs and scooters are inevitable.  Obviously, you have not read what I did as a child.

Here’s to Colin, Klara and me, perpetually Pollyanna and proud of it.

Musings on the NP Visit, UTIs, Pain and the Perfect Storm

Posted on by tresswann

Male discretion advised – details of my visit to my ob/gyn Nurse Practitioner disclosed.  No salacious details.

I have been seeing my nurse practitioner for around 20 years.  I was brought up to believe having these exams were responsible, important and natural.  One year, when I was out of work without health insurance and no money, my parents gave me my annual exam as a birthday present.

For me, the two worst parts of the exam were being weighed and the Pap smear.  I had a botched one once and bled for days.

I have followed R from her original practice to a newer one.  In this practice, she only sees patients one Saturday a month.  She has seen my  deterioration.  I don’t focus on it and have a tendency to actually forget I am less able.

I wake up Saturday morning with burning pee.  Good thing I am going to the doctor.  I ask my husband to remind me to tell them I need a test if I rush in and need to use the bathroom.  I use the walker because it will make life easier.

I tell the nurse I think I have a UTI.  No problem, we’ll get a sample.  The exam room is so small we have issues maneuvering the walker.  She leaves me with the cup and walks out.  The bathroom is not handicap friendly.  I cannot believe this as it is an ob/gyn practice and what about the big pregnant ladies?  I then go through a series of contortions to sit, hold the cup and collect the specimen without falling, dousing myself with urine, or dropping the precious sample.  Whew.  Mission accomplished.  Next removing everything including spectral leg.  Easy-peasy.  Uh oh, I forgot getting up on the table.  Problem, the step attached to the table moves. It slides in and out.  This is not happening.  Now, another thing my mother did for me is that I don’t have nudity/body issues in medical settings.  I find the whole gown thing on the annoying side.  My husband has explained to me that I must be aware of others discomfort.  Point taken.  R comes in and I show her the situation.  She wants to call for help.  I explain if we hold the step stable and maybe give my leg a boost, it will work.  Well, we did it but now she wants to add another gown for my modesty.  The good news is that I have aged out of the Pap smear.  I can’t begin to imagine how that would have worked.  She does a dip on the specimen and says you definitely have an infection.  Do you want antibiotics now or do you want to wait 48 hours so we know exactly?  NO! DRUGS NOW!  She phones it in and high fives me as I leave as we didn’t do the weighing thing and I tell her my vastly reduced weight.  I am almost 50 pounds lighter than when we first met.  I inspired people after dropping the first twenty.  I don’t really mind that kind of inspiring as opposed to the disease inspiring.

We stop to go grocery shopping on the way home.  Pharmacy is only a mile or so from the store so we ring and it will be ready in half an hour.  Fine, go home, unpack groceries, check email.  Ok, let’s go.  I try to stand up from desk and can’t straighten up and am in such excruciating pain that I scream.  Tom comes running in.  No, I have not fallen.  It’s my back.  Get me two Advil.  I creep out to the front room.  I have a very tiny house so we are talking less than 20 feet.  I sit down.  I try to stand and scream again.  My vision is going black and I am seeing stars.  Tom’s reaction?  I had a sledge hammer fall on my hand and didn’t scream.  My reaction?  If I had the f*ng sledge hammer right now, we’d see about that.

There is no way I can drive to pick up the ‘scrip.  Tom has no license.  “how come this is happening to you? You were fine this morning.”  Actually, my left leg which is the allegedly “good” one was really wobbly.  Next, as I am thinking how I can get the meds, and not move, and not cry, he announces his cellphone is broken. I tell him to charge it. It doesn’t work.  “We’ll have to go to Apple.”  Are you f*ing insane?  I am in excruciating pain, can’t get meds and you want Apple?  I text my stepson who was supposed to be away for the weekend.  Luckily, he’s home and says no problem I’ll pick up and be there within the hour. Dad gets on the phone and tells him his phone doesn’t work.  Kid laughs and says he’ll make an appointment.

I am blessed with my stepsons.  He calls from the pharmacy to confirm my birth day.  I ask him if needs the year and the pharmacist laughs.  This is good.  The kids know that I am older than their Dad but not by how much.

I can’t take the meds till evening.

I had Vicodin once for oral surgery.  Everyone laughed as I had to use them at work, and taught a class that usually gave me a headache.  I did a great class.  There were leftovers so I saved for a rainy day.  Tom had an operation afterwards and ran out.  He was supposed to replace mine.  He didn’t.  There were no painkillers in the house.  I took an extra Baclofen.  I am resourceful.  One of the kid’s friends smokes lots of weed.  He was ecstatic some years back when he went into a cabinet for a glass and found a baggy of catnip.  “Mr. and Mrs H…””Hate   to disappoint, it’s just catnip.”  Eventually, we told him he couldn’t visit us if he was stoned,  I am thinking of Meghan Llewellyn(@BBHwithMS) and her recent journeys with cannabis.  Two thoughts, if she has been dealing with pain like this, is cannabis enough?  And, was what was happening to me associated with my condition? I’ll do anything to ease this.  However, step was supposed to go out of state with his friend, so no relief there.  The last time I touched weed was in 1994, Good Friday.  Before that, 1980!  I only used it when I was drunk.  Bad combo as I don’t come off the ceiling for days.

My mother had a high tolerance for pain – childbirth was overrated, teeth drilled without Novocain.  I so do not take after her.  The pain gets worse.  I do remember stepson gave me acupuncture cushion.  A little relief.

I take the meds and it also begins to ease a little.  However, I cannot lift my left knee or bend it.  I am scuttling around the house sideways.  I can’t step over the saddles.  Tom has to help me into our  high profile bed.   I get up in the middle of the night and have rolled over.  Crisis averted.

So, this condition has seeped into my life.  And everything is not MS.  Sometimes an infection is just an infection.  Of course, the aftermath is worse.  Losing exercise is harder to regain.

It’s amazing how much we take for granted and how much something as simple as bending a knee means.  It’s a couple of days later and I am still a tad twingey but I can move my knee; I can stand up.

What happened?  I think it was the perfect storm of adjusting to the new Frankenstein spectral leg and the UTI, all exacerbated by my condition.

Plan?  I need to have access to MMJ!

A Third Spectral Leg and Other Woes

Posted on by tresswann

I hate the idea of a brace, appliance, AFO or whatever you want to call it.  So, I have always called it the Spectral Leg.

I had my first one fitted after a visit to an orthopedist.    SeeDoctor Visit, the Spectral Leg and the Motivation of Ugly

So, I finally made the appointment to be fitted with the new ugly.

I commuted for years into NYC and took the same trains.  You recognize the people after awhile.  Around the time, a couple years back when I knew I was going to lose my job, a man came up to me on the train platform and said he had been looking for me.  “You’re the woman with foot drip, right?”  He told me he used something called a WalkAid that I could be fitted for not far from my home.  We looked it up and it appeared to be similar to the Bioness which we had “discovered” a year or so before. When I had asked my doctor about it, she had told me my existing brace was working and it would do pretty much the same.

Well, the place I had to go for my fitting was the same place for the WalkAid.  We were determined to inquire about it.

My second one has always hurt me.  It has caused my foot to burn and I actually get blood blisters on the ball of my foot from it.  Originally I was told it was in my mind or a nerve thing.  Most recently, I was told that my nerves made it worse.  The last doctor didn’t address it at all as he was replacing it.

The fitter asked about what the doctor wanted as he usually writes something more detailed than was provided.  He also asked who had prescribed my current one and how.  My neurologist wrote it as I wanted something less obtrusive and one that would give me better shoe selection.

He looked at it and the way I walked.  By the way, I made my fifth public appearance with a walker.  The brace has hurt me, not only in terms of the physical pain but also because of its design.  It has hurt my walking.  The first one extended to just before the ball of my foot; this one to my entire foot.  Apparently, this has not allowed my foot to work properly which is why I find myself walking so peculiarly.  My knee and hip are more messed up.

Options?  Well, the to the hip one that the doctor knew I wouldn’t wear and thought might be too heavy for me. One that’s like the first but halfway up the ball of my foot – limited shoes and it won’t help the knee problem.   And then a massive ugly one, front, back and sides.  Oh, I do have a choice of white or black and I can have purple butterflies.  I am a woman of a certain age so purple is regal but butterflies!

And while we waited, we read the WalkAid brochure.  Any shoe!  Walk barefoot on the beach.  The beach is my sanity and peace and it’s been denied to me for years!  Plus because it sends electric impulses through the nerves, it could refire them.  The fitter says I can have it but it won’t help my knee and the way I walk now.  I feel like weeping in frustration and anger.  It’s a little bit me, a little bit them.

So for now, my plan is to get and wear ugly and fight.  And TRUST MY INSTINCTS.

My instincts say wearing it all the time creates dependency and weakness.

How does anyone navigate this mess?  And this fitter doesn’t believe I can improve.  Maybe I am a fool but I don’t buy that.  My plan is to really max healing my knee and getting the WalkAid.  Beach here I come.  Maybe I am delusional but that’s me.

Doctor Visit, the Spectral Leg and the Motivation of Ugly

Posted on by tresswann

Another doctor’s visit – this one for rehabilitation.  Here’s a funny to start. Tom’s dad had to go into physical rehab a few years ago in FL and when he rang to check on him,  they connected him with drug and alcohol rehab. So, mine is for physical evaluation.  We were waffling about going as it was close to rush hour in NYC bound traffic and over 30 miles from the house.

One of the challenges confronting dealing with this condition is that the onus is on the patient to discover and coordinate care and options.

Initially, my neurologist never suggested a brace.  I kept on falling.  However, I am used to falling and as a rule do what I have been told are very graceful ones.  Sometimes, I just crumple.  I was going through a stage where I was falling a lot and heavily on my knees. Our solution:  Harbor Freight for kneepads.  Uh, ugly and unwieldly so a friend referred me to an orthopedist she had seen for carpal tunnel.  My knees hurt and I thought I had done damage.  He wrote a scrip for the first brace.  It was filled by a little old man with hair plugs.  He told me I was lucky as I would soon have them on both my arms and legs.  When I went for the fitting, I swore he used a hair dryer to mold it to my leg.  I threw it in the trunk of the car and basically didn’t use it for about a year.  It was white plastic and covered my calf.  I used to crack up my physical therapist by saying it was a great shoe horn and helped me lift my leg into and out of the car.  I mainly used it as a visual cue and for some support walking and climbing stairs in Grand Central, Time Square and Penn Station.  I didn’t wear it in the office but had nice flats and kitten heels.  The spectral leg, as I prefer to call it, could only be worn with lace up shoes.  I am known for not wearing sneakers.  I was brought up to believe that they are acceptable for the gym, only.  I was never one of those women you would see walking in Manhattan in a suit and sneakers.

When things finally deteriorated and I started wearing the spectral leg  full time, the ugly tie shoes weren’t happening.  I spoke to the neurologist who gave me a scrip for a new one.  This one was to go completely under my foot and be less obtrusive than the original.  It would let me  wear different shoes, too.  My neurologist has always understood that looking good is important in helping me feel good.

The new spectral leg did not have shoe horn capabilities.  I can’t usually put it on myself.  As is my usual habit, I really didn’t use it for months.  Big problem when I did, sometimes, after just an hour my foot started to burn.  Other times, I could go for a few hours.  The pain was incredible.  Very problematic when I had to drive as my nerves would then cause the foot to jerk.  The GP said it was in my mind and I should talk to the neurologist.  The neurologist looked  at me as if I were crazy and said why would it be neurologic.  Finally, finally an ugly blood blister showed.  I’ll spare you the disgusting pictures.

New insurance, podiatrist.  He says it’s the spectral leg.

Back to neurologist.  I show her the pix.  She recommends a physical rehab doctor.  Ha, my insurance doesn’t cover him.  We go on a quest to find someone who is on my insurance and can treat my issue.  As this is going on, my walking and mobility are deteriorating.  I am hyperextending  my leg.  When I walk, I look sort of like Quasimodo and Igor.

We find a doctor, who is covered, who works with feet, is local and has available appointments.  He was honest enough to say he can’t help me.  However, his take is that the condition causes my nerves to flare and offers me drugs! And a referral to today’s doctor.

This is the first time, since the whole thing started that someone really evaluated the way I walk and move.  How come this took nearly 10 years.  No looking back but maybe, just maybe I could be in a different place now?

I explained how I don’t wear spectral leg in house.  He admired my seasonal cane.  We discussed how my neurologist and physical therapist suggested a walker.  He concurs but calls it a rollator,  He suggests it can be available in pink with a seat.  Tom quickly vetoes him on that before I can.

Next, yes a new spectral leg, an uglier one.  It will stabilize my knee and hips.  Some of me is still strong but my abductors are very weak.  He said watching me walk with my hyper extended knee hurt him.  If I don’t take care of it, I can become arthritic and the knee much worse.  I get that.  This new spectral leg is going to have major knee support and more of a back.  He says my little booties won’t work.  I’ll need sneakers or orthopedic shoes. NOT!! NOT!!  I will not do ugly.  He did suggest a shoe store and those shoes are UGLY  and a  few hundred dollars.

He does agree physical therapy and the gym are very important and will help.  Of course, insurance won’t  cover enough sessions. And I have to wear it from when I wake up.  I almot never wear it in the house. And almost never use a cane, either.

I am beyond upset.  I haven’t exercised enough.  Vicious cycle  – I can’t go to the gym so I get weaker.

This doctor, as does my neurologist, believes I can regain and retain muscle.  So Plan B – back to gym as soon as I can with existing walker, seasonal cane and spectral leg.  DO NOT THROW OUT existing ugly shoes.  DO become fanatic about clean eating/auto-immune diet.  This is the kick in the pants I need to commit.  Ugly inspires

Jeans are not just Jeans (and the Memory Motel)

Posted on by tresswann

Just about 20 years ago, I was living with a man, may he rest in peace, and it was not good.  We reached a point where he took everything out of me.

I have never real been a jeans person.  I was brought up in a household where ladies didn’t wear trousers, let alone jeans.  I always had the odd pair for mucking about.

I left him, started a new job and moved.  Not too much stress. Still, as is my way, we stayed in contact.  Prior to getting the new job, I had been pretty much subsisting for several years.  Jeans were not a necessary.  I was unhappy with him.  I gain weight when I am unhappy.  He gave me jeans that no longer fit him.  At my new job, there was dress down jeans Friday. The 20 year old used  to laugh and say “Boyfriend jeans.”  I was happier and walked tons every day.  The weight melted off even though I had a big cookie every day!

I had been in straitened circumstances for a year.  However, the following year, I bought a pair of jeans for me for nine dollars.  I also had tons of vacation time and little money.  One of my friends had a holiday voucher he hadn’t  used for Montauk.  I loved Montauk.  This was in the very early aughts before it became a hipster destination.  I paid my friend  a nominal sum and headed  East.

Now, in the early 80’s I had a share in a house in Amagansett with the 70’s high school cheerleading squad.  They were preppy before  it was a thing.  They used to line up their Weejuns at the edge of the beach.  I was so not preppy.  Definitely, not a Weejun person.  They slept in T shirts.  I slept in lingerie.  We would go dancing at Shagwong’s in Montauk.   It was OK.  I wanted to go to the Memory Motel.  Yes, the Memory Motel  Rolling Stones one.  Memory MotelThe cheerleaders opted out.

Fast forward to 2001ish and me in Montauk.  I made a beeline to the Memory.  Well, in the intervening years, things changed.  It was now a dive bar.  Fine by me.  Me and my 9 dollar jeans and flip flops walked in.  Happy hour.  Pool tables.  Beer.  My poison has always been Scotch on the rocks.  I breathed it all in.  The man I left did not like going out at all. And when we did, he accused me of coming on to everyone.  It felt so good to be out and about.  I walked, so no worries with drinking.  And as always, men bought me drinks.  It was a different world to when I had last been up and about.  Men were trying to sell me on their prospects.  Inevitably, I picked up someone, Billy.  We went out for steak.  And he asked me out for the next night.  Dilemma – what  to wear?  I had already packed myself into the jeans.  I had to do it again but with a changed top, one that could cover my packed in tummy.  And please know, I HATE  wearing the same thing twice.

So, we go out for drinks. And he said, ” I know that Susan likes to drink.” (Ya think) “but what else does she like to do?”  Great question.  I had fought so hard to retain what identity I had that there wasn’t a lot leftover.  I forgot that I read, garden, cook, write.  Lesson learned.

I bought other jeans and no, I never saw him again.  I always packed my tummy into those jeans when I could.  Sometimes, I couldn’t even zip them up.  They became my gardening jeans.

Fast forward again to this past weekend.  Life has changed and I own more jeans.  But, and there’s always a but, I have lost weight and they don’t fit.  And the rest were somewhere else.  I don’t wear jeans in the summer.  It’s the change in season so no clue as to where they are.  The weather snapped and it was cool Sunday morning.  I had to drive Tom to the blood bank.  Gardening jeans! Hadn’t worn them in ages as gardening is something that’s been taken from me. And they were baggy.  First time, ever.  But… the spectral leg can’t be hidden.  When this nonsense and that’s how I like to think of it, first started; I preferred to wear the spectral leg on the outside.  It was a clear indication of what was not right with me.  I wasn’t using the cane at that time.  I nearly sacrificed a favorite pair of black leather pants because the spectral leg could not be seen.  Now, because of the cane, I try to keep it hidden when I wear pants.  But  Sunday, I wasn’t even going to get out of the car. Tom was upset that it was visible.  I am upset that I finally fit into the jeans, I don’t want to wear them in public.

Instead of representing the freedom they once did , they now represent the limits I face.  It’s time to give them up and move on.