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

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

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

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

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

Mourning Clothes

I know it sounds trivial but I am mourning my clothes.  The weather has  snapped and I need heavier clothes.  The way my house is structured there is only one real closet.  We do have armoires upstairs, keyword – upstairs.  I have enormous problems going up and downstairs without having anything in my hands.  I used to work in the garment industry and from time to time in retail sales.  I know how to carry tons of clothing over my arm.  I used to do it without even thinking about it. Now, I have problems hanging one suit in the closet.  Plus, I am dependent on T to get up and down the stairs and carry things.

So, this morning we go up and I want to bring my winter things down.  I’ve already brought down most of the casual stuff – the sweaters, the cords.  Today is for the business and dress stuff.  Each season change, it’s like running into old friends.  This year,  there are new and different options.   I weigh less so fit into different things.  And since I constantly have to use a cane instead of making the spectral leg visible, I have more options.

I bought some beautiful suits and pieces when I returned to work last year.

I start making a pile for Tom to take downstairs.  “Where are you going to wear all this stuff, really.”  Rub it in.  I worked from mid-February last year.  And the winter before that, I interviewed heavily.

We brought the clothes downstairs.  I don’t want to give them up.  I have always had a definitive sense of style.  I express myself through my clothes.  I do not want to live in sweatpants and jeans.  It’s not who I am.  I miss my dresses! Forget the party stuff.  I left all that black velvet upstairs.  I haven’t been to a party in years.  I was down to one holiday luncheon or dinner a year.  It’s hard for me to navigate.  NYC is out of the question.

People barely dress any more.  It is depressing to see all the faded jeans worn by faded people.  Where’s the sense of excitement?  Where’s uniqueness.  Let me date myself further by saying I sound like Hermione Gingold in both Gigi and A Little Night Music.

 

I have more pants than ever.  I was brought up in a household where ladies don’t wear trousers.  However, I need them for interviews  so I don’t terrify potential employers completely.

Today, I am realizing who am I kidding?  I have had 1 in-person interview since July.

I want to get up most mornings and wear my clothes. I want to preen like a peacock.

This condition is trying to destroy my soul.  It’s tried to take so much from me.  I have to draw a line in the sand, somehow.

Crashing

Well, the doctor did tell me to use the walker, at least till I meet with the rehab specialist.  I rang this week and he doesn’t accept my insurance,  However, he will see me at a clinic.  Tom doesn’t like that but we are just going to have to suck it up and go.

I have been unable to go to the gym this week as Tom is on another binge.  Aside from  the fact that the gym and liquor store are in the same center, he’s been too drunk to really go out in public.  It is what it is.  So, as an alternate measure and part of my plan anyway, I have been doing the stair stepper as much as possible.  The  most I’ve reached is 6600 steps, not enough.

So, what I did on Thursday, was lock the room door.  It is the only room in the house with a door.  This allowed me to do some thinking, writing, reading and even watch programs that I like while I did the stepper. I did get a bit wobbly.  Tom spent most of the day passed out.  After 5, I unlocked the door.  Dunno why.  Just did.  And years ago, he did destroy the door so it’s not like it means anything except symbolically.

The last few weeks I have felt myself deteriorating.  Ever optimistic, I have tried to attribute it to the intense stress that I have been under as well as the lack of activity.  In order for me to take control, I took the walker out from behind the door yesterday.  I need to practice with it before I use it outside and frankly, I needed the extra support.  I almost  never use the spectral leg or cane in the house but I guess life is beginning to change.  I struggled not to weep.  How did this ever come to pass? How can I consider this a viable option?

It happens sometime after you become an    adult.  You walk down the street and see a reflection in a window.  Who is that adult that resembles you if you were grown up?  Wait a minute!  It’s you and you are grown up.  The next step is inevitable.  You catch sight of yourself and….  Yes, I see a little, fragile, misshapen old lady.  How the hell did that happen?

It’s after 5 and I felt a bit weakish.  I didn’t have the cane in my tiny room.  I went to sit down and somehow I didn’t sit on the chair correctly, lost my balance and fell.  I fall well but still make all kinds of noises along the way down.  Tom had been passed out in the other room.  He rushed in bloodshot eyes and all.  This man does not wake up well in the best of times.  I was flat on my back on the floor.  There’s an upside to everything.  Due to drunkenness, I had  a bag filled with bags of tea on the floor.  It was supposed to have been taken upstairs and out of the way.  I can no longer go upstairs without help so it was lying there.  Lucky!  My head hit tea instead of the floor.  So there I was.  I wasn’t hurt but couldn’t move.  This is a man with three sisters and I think he might have played with dolls or maybe not because he has no concept of how real limbs work.  I literally can’t sit up.  First order of business is to get me upright.  He pulled but I have no strength at all apparently in my core.  I slid back down.  It took awhile to explain I needed something to hold onto to keep me in a seated position.  We get there.  Next step is get me to stand or into a chair. Ha!  This is when I discovered my right leg  no longer works.  It cannot bend .   I cannot even cry.  Picture this.  Sometimes, I have problems getting out of the tub.  I lift my right leg with my arm.  If it doesn’t stay up, Tom comes in and lifts it for me.   I explained to Tom that we were going to have to do the same action but not in the tub.  He was still fuddled. Back to I do not have doll limbs.  The video would have gone viral.  Somehow, we got both legs bent.  Then  I flipped over like a bug.  Somehow, I managed to pull myself up onto the chair.  Tom stumbled back to bed.

This was a pretty devastating evening.  I knew I had deteriorated but not to this point.  I guess I need to buy one of those I’ve fallen and can’t get up devices.  I am so scared and frightened.  I WILL NOT BE IMMOBILE.  I WILL DANCE AGAIN.   I must be delusional.  The only thing to do is fight harder  Someone just told me today, in another matter, that my persistence paid off.  I guess I need to keep it up.  I am losing strength all around and crashing

Yet Another’s Doctor Visit – Digress and Progress

Every time I decide I am going to break up with my doctor, I fall in love with her all over again.

I went into NYC  Friday morning for a belated visit.  Originally, she wanted  to see me in June before my infusion therapy.  It didn’t happen.  Then came summer with the anticipated railroad problems leading us to September.  I cancelled last Monday because it was mid day, bad weather and the UN Assembly was in session.  Glorious cool weather Friday.  I wore my macrame type sandals.  It was a bit cool but they are comfortable plus I knew they wouldn’t fall off if I had to go up or downstairs.  I was walking for crap.  We got into Penn shortly after  7:30 a.m. so it wasn’t horrifically busy.  I was frightened.  If I hadn’t been holding onto Tom, I would have been  knocked over or fallen.  He had my back for the escalators which have become another ring of Hell for me.  It’s one thing getting on.  It’s a whole other thing getting off.  Then we had to cross 7th Avenue.  Yes, I was already shot before I reached the bus.  I started to become agitated and weepy as it was clear to me that NYC is gone for me.  This is where I worked.  This is where I can make real money and do something that I like.  And it’s more than that.  It’s the stimulation of the city – the clothes, the food, the lights, the culture.  It’s closed to me.  I can no longer do this.  I struggle onto the bus. Tom has to lift my left leg to get me on  The bus driver is awesome.  She asks where I am getting off so she can make sure she pulls all the way in.  I take a disabled seat.  Somewhere in the 40’s, 50’s a sandwich delivery guy sits next to me with huge delivery bags. Uh, how am I going to manage getting out?  Just breathe! Then in the 60’s a man with a scooter prepares to get on.  My bus driver ejects the delivery fellow and the older lady across from me.  “You stay”  I am amazed when someone tries to push past him as he is leaving.

I am the first appointment at the doctor’s which is good.  She calls out to me as she is coming in with her coffee.  She spends nearly an hour with me.  Sometimes, I am techy and sometimes I am so not.  I recently figured out how to make Notes on the phone.  So, I’ve been collecting all my concerns in a format that is accessible and legible.

First off, we admire my sandals as I tell her that I need a new spectral leg.  She is referring me to a rehabilitation specialist.  He will look at cane, spectral leg aka brace, physical therapy and the way I actually walk.  This is good.

Bad, she thinks I should use the walker.  The  one that has been sitting behind the door, bought with an Amazon freebie.

She tells me how I am always so well put together and how important it is for my health.  I have on the beaded and embroidered 3/4 length pants that the orthopedist thought when the beads showed up on the scan, that he had discovered a whole new syndrome.  My therapist also says I am always put together  and it’s good for my health.  I miss getting dressed for work.  I open my closet and mourn.

I have low blood pressure.  My  late former in laws used to marvel how low it was without medication.  Due to Tom’s recent cardiac adventures  and his obsessive nature, blood pressure is taken all the time.  We even checked his machine against his surgeon’s and it’s fairly accurate.  Mine is way, way low.  Doctor says, “Are you dizzy or faint”  No, that is my old stress reaction.  I turn grey and my eyeballs roll up in my head.  Doctor says, “What we say about people like you around here is that you are going to live forever.  You are good.”

We talked about my drugs.  Yes, she wants me to stay with the alpha-lipoic and the Biotin.  Okay, as I have said before I have issues around my nails.  They were bitten and ripped to the quick for years.  A few years ago I decided  enough and grew them.  They have been  long and hard since then.  Last October I had to go to the salon to have them cut.  This year, they are snapping like crazy and my hair is visibly thinning. Salon’s verdict on the nails – maybe they are too hard.  Doctor’s question – what are you eating? Ah, here we go – not enough protein.  This has always been challenging for me.  I am so not a meat eater.

Now, I find this talk of food extremely interesting.  When this journey started, I asked her boss about food and he pooh-poohed me.  I took myself and my money to a nutritionist and she gave me what I thought    was an insane diet and other doctors subsequently agreed.  If she had only said, “This is the Swank Diet and it’s been used since the 1950’s.” I would have signed up.  As things progressed, I discovered a  bunch of different ways to eat that can address this.  Two years ago, I stopped gluten for months and noticed the difference.  Alas, I’ve fallen off the wagon.  Recently, I saw that the institution that treats me has done food studies.  In case you haven’t guessed it does make a difference.

My husband used to work at nights.  He’d wake around 11 and I’d go to bed around 9.  The last night he worked, I got up to go to the bathroom shortly before 11.  I remember feeling very hot and not so well.  The next thing was Tom shaking awake from a really great sleep.  He awoke to find my body in the hall.  We have a very tiny house.  There was blood on my head.  We never knew if I passed out and hit my head on the way down or hit my head and passed out.  Lately, I have had episodes when I experience the same kind of heat and my glasses fog briefly.  And the answer is still MENOPAUSE!   She suggests also that I drink more water.

Now all this caused me to start thinking about my period, menopause and my affliction.  People always laugh because I know the exact date it started.  Easy, because it was Halloween.  So, 40 years later in October I decided enough is enough.  I willed myself for it to stop.  Wait a minute.  That’s when I became symptomatic.  Something to ponder and research.  Not sure where it will all lead.

We are now at the 25 feet walk.  First time, when it started, I did this in heels.  I tell her I walk like a toddler.  She tells me I walk like me.  So, not a good thought.  This is the  first time I have ever done it with a cane.  I am terrible and slow.  I miss walking  I miss the speed, the breeze, the joy.  Walking was how I figured things out.  It seems like everything is being  taken away.

Now, to the inspirational part, and I hate the  inspiration part, attitude counts.  I told the doctor about the woman I had met who was diagnosed this year and appears to have given up.  She is anticipating the worse – making arrangements for ramps, etc.  Here’s a difference, I told the doctor in the last few weeks, I seem to be experiencing MS fatigue.  I used to be relatively tired all the time, waking for work in the 4  a.m. hour.  This is different.  It feels like dying, I guess.  It is the most peculiar sensation.  “Have you ever considered a nap?”   I am my mother’s daughter.  Maybe, just maybe if you have a high fever.  Though I have memories before this marriage of drifting off during a Saturday afternoon radio program.  She agrees that our mothers were the same and insists I need to nap.  Here’s the thing – if I feel like I am dying, the last thing I am doing is closing my eyes and lying down.  And my life is short and limited enough as it is.  I will not waste what’s left of it napping.  The other woman doesn’t nap.  She stays in bed all day! My doctor admits that attitude is important.  She starts to tell me about a patient group.  I cut her off.  I am so not interested in people who LOVE their scooters!  Nope, this is cool.  These ladies attend all the drug dinners for free, whether they can or cannot or want to take the drug.  They get a paid night out to hang with their friends.  This is a good idea.

I leave with recommendations  for disability, physical therapy and Ocrewhatever (there is a small risk for breast cancer and I have the dense ones.  I always picture them as saying d’uh?)  I also leave more determined than ever to beat the odds.  Why not?