mobility

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

Mourning Clothes

Posted on by tresswann

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

Posted on by tresswann

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

Posted on by tresswann

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?

 

Validating Tiny and Related Perception Issues

Posted on by tresswann

I have struggled with my weight since I was a teenager.  Okay, looking back, I wasn’t remotely fat.susan reima captree  However, I had morbidly obese aunts on my paternal aide and a maternal great-grandmother I never knew with obesity issues.  This caused my parents to be scared at the least hint of weight on my part.  I always assured them that I would not be obese due to my love of clothes.  That being said at one low point in my life, I weighed about 50 pounds more than I do now! I am about 30 down from when I joined SP.  I weigh the least I have in my adult life.  I find it funny that I obsess now if I go up 2 pounds and I literally feel and see it.

This year, for the first time, I have been referred to as tiny.  I find this difficult to wrap my mind around.

This week I did a tea party with people I’ve never met.  I wore my little Boho thrift shop find dress.  It says it is a size 4 but that’s a manufacturer vanity lie. IMG_0828 (1) Anyway, I walked (relative term) into the house and the host and her sister exclaimed that I was “adorable” and “so tiny”.  I guess it must be true.  I do not, do not perceive myself as tiny but am thinking I may need to rework that assumption.

Adorable was problematic for me as well.  Egads, I have entered little old ladydom!

What else did I learn/ reflect?

Well, the  reason that I finally achieved tinydom was because of my condition.  It’s not a diet.  I have changed the way I eat for health reasons.  Wait!  Isn’t that why people diet?  For me, it was the realization that what I eat impacts how I walk and possibly the progression of my condition.  If I am doing it correctly and completely, I do not have, gluten, eggs, yeast, dairy, red meat and sugar and very low fat.  The reality?  Even if I limp for the rest of my life, I am gonna have that chocolate.  I do need to get back on a stricter track as I feel and see my deterioration.  I am a fighter.

The host’s sister was diagnosed in the last year with another version of my diagnosis.  Mine is supposed to be a continual path of deterioration; hers can come and go.  It was great to physically speak with someone who gets it.  But also what I realized is that I may be made of sterner stuff.  My parents NEVER  accepted anything a doctor said as gospel.  I went to Johns Hopkins and was exposed to pre-meds so know that clay feet are a step up for some of these people.  I persevere.  I saw this woman as giving in.  Yes, I get fatigued.  Yes, I get discouraged and upset.  We pulled up to this woman’s house and I freaked.  There was a small flight of steps going in.  Once in the house, which was beautiful and charming and originally built in the 1920’s, there was a step but no railing into the main part of the house.  It was about 2 inches but I needed help.  In the main area, there was a minute saddle dividing the area.  Luckily, I saw someone else trip so I didn’t need to fall on my face.  I definitely felt I was getting the little old lady treatment by the guests.  I know, I know I should be grateful  but there’s that issue of perception again.  I still think of me as that young, vibrant woman instead of a vibrant, older lady with mobility issues.

I also realized that attitude means a lot.  I have down days and yesterday, I pretty much couldn’t move due to the expending of physical and psychic energy the day before.  But I continually fight. I believe in the possibility of miracles.  It makes a difference.

Third Wheelchair Ride

Posted on by tresswann

This is beginning to be so unfunny.

My husband gives platelets regularly.  He has a high platelet count and is a universal donor.  He does it just because and has only used his accrued point one time to get a fleece that advertises the Blood Center.  H e went  mid July but they couldn’t do it as his blood pressure and pulse were too  high. H e’d had a steak dinner the night before and had taken his blood pressure meds too late.  Two weeks ago, his pressure was alright but his pulse was still high.  We started to monitor it but it didn’t go down.  In the middle of the night he told me his heart was racing.  I made him call the doctor yesterday and she said ER.  We called urgent care, same answer ER.

We went.  By the time, we arrived, parked and he helped me struggle over, his BP and pulse were catastrophic.  Of course, I walked for crap because I was so nervous.  Now going to the ER here is not a new experience for me.  My first time was 11 years ago, when Justin’s SUV was totaled.  He called to say that the driver’s side was destroyed.  OMG! You weren’t driving?  No, when I saw the truck coming at me, I jumped into the passenger side.  I had to take that call as Tom went completely white.  So, the evil stepmother, aka me, insisted on ER.  He walked out but ended up there 2 days later anyway.

My next visit was 7 or 8 years ago.  I had a restraining order against him for drinking and he was seriously out of control.  I locked him out and he went to his sister’s.  He wanted help but was drinking even more there.  I walked out of work in NYC, dragged him into the car, held onto him as he tried to jump out while it was moving and dragged him into ER.  I can’t remember his blood level alcohol at the time except that it was astronomical.  There was a warrant out for his arrest but he was able to get into rehab.  It was not successful.  Other visits ensued.  One time, they had to guard him and put him in restraints.  Another time, I just checked him in and left.  Twice, after his cancer operation, I had to take him to Stony Brook ER.

All of these times, I wasn’t scared.  Ok, 2nd Stony Brook ER, I was.  However, throughout all of these and his cancer operation and his hernia operation, I worked.  I had that laptop and kept on going.      I can be a monster in that regard.  We needed the money and I needed the distraction.

The difference last night was that he was conscious and aware.  I wasn’t working either.  The other times, we pretty much knew what was wrong.  Last night they did not.  And before, I could always walk.

Alright, for his hernia operation in 2015, my brother-in-law helped.  At the hospital, they thought I was the patient.  A friend of mine was in the ER a few weeks ago and again, everyone thought I was the patient.  Last night, they gave him the visitor pass.

They announced at 7 pm that all family members/visitors had to leave the ER.  This was going to be extremely difficult for me.  I knew I couldn’t make it to the car at all by myself.  They told me they could not release him.  We thought someone could just give me their arm and I would go and wait for Justin.  No Security was  hell bent on getting me out of there.  They provided a wheelchair even though I explained I had only been in one twice before.  The guard even asked me if I could move my feet.  Uh, that is the problem.  I protested as I didn’t want Justin to see me like that.  The guard literally left me in the waiting room.  Luckily, I was able to navigate out of the chair just before the kids came.

They took me home.  I am appalled at my deterioration.

Apparently, Tom may be operated on today. It’s a simple procedure.  At least, that’s what they tell me.  Hopefully, I will be able to get help there and back.

I am so scared this time.

Tomorrow is our 13th wedding  anniversary,  Recently, I was contemplating life without him.  I realize that no longer is an option.

 

Jennifer’s Way, MC and Me

Posted on by tresswann

Recently, I read Jennifer’s Way by Jennifer Esposito.  If you don’t know, she’s an actor who suffered for years with undiagnosed celiac disease.

This is a must read even if you do not have a celiac problem.  If you have been on a journey to discover what’s not right with you, this is informative.  It took her years and tons of money.  What hope do the rest of us have? It also reinforced what I have learned on this journey.  It’s up to you.  You are the one who needs to do the research.  You have to keep on asking the questions, over and over. And then, question it again.  It’s up to you to coordinate it all.  This is brutal because to begin with the reason you are on this journey is something is not right.

Three years ago, I started playing and playing is the right word with diet for overcoming my condition.  That’s what we like to call it “MC” for my condition.  A doctor told us that’s what we call it when we don’t know what it is.  And no, not MC.  My belief is, if you name something like that, you give it power.  So, I may be in denial but  that’s how I deal.  Anyhow, just for fun, I cut gluten for one week.  Then I went out to dinner and there were popovers.  Can I tell you, I got a headache immediately.  Yes, there is definitely a relationship between my walking and gluten.  I had an iron stomach as a child.  I could and did eat anything.  And it fascinated my father, who was afraid of vomiting, that I could throw up, most times, and return to the table.  I was sure when this started that I  had no food sensitivities.  I was told that when I was little I was allergic to peaches.  My mother would not have that and fed me little bits until I could eat peaches.

After the gluten, I stopped dairy.  I drank tons of milk as a child.  I only stopped when my brother became chubby and we switched to skim milk.  I also had yogurt for lunch most days.  This started when Dannon was the only yogurt and there were only 8 flavors.  This was hard for me.  Guess what?  The stubborn weight dropped off!  And something else, it was always a family joke.  Right after I was born, the people from my father’s office came to visit.  I passed gas so loudly that this woman nearly dropped me.  Ahem, once I stopped dairy that stopped, too.

One of the things discussed in the book was the hereditary nature of things.  Hmmm.  Another thing that immediately struck me was that for years, Jennifer lived on Pepto Bismol, ginger ale and crackers.  So did Daddy!  I knew once that he really loved me when he gave me his bottle of Pepto when he was leaving me at uni.

I drifted back slowly to the gluten.  Not a lot.  I’ve never really been a bread or pasta fan so no problems there.  I do stay away except for pastry and the occasional piece of cake.  No yogurt but yes to ice cream. I’ve noticed in the last few weeks, yeast triggers stomach pains and weakness.  Oh and secret vice, frozen condensed milk.  I get violent stomach cramps.  Hmmn

It’s just about a month to my birthday so here we go again.  I am going to strive for no gluten or dairy and see what happens.

Read her book.  See what journies it leads you on

Firsts and Hopefully Lasts

Posted on by tresswann

I participate in research studies.   It’s a way of making some good come out of something less than positive.   And it’s also the way I can get MRI’s.  When I originally had insurance and this started. My first MRIs cost me thousands.  Then I had Affordable care and it was reasonable.  I am back to corporate insurance and a too high copay.

This study also focuses on the neurologic.  Usually, I do those, the blood and the physical first and the 90 minutes or so of MRIs last.  This time it was reversed.  We needed to be at MRIs first at  9a.m.

I am spoiled.  Since I have started working on LI, waking at 4:15 a.m. no longer appeals to me.

I was better able to get to the bus uptown this time.  However, I realize that I am no longer able to work in NYC.  This is extremely disheartening.   We took a slightly later train and ran a little late.  It’s two blocks from the main office to the MRI.  Unless you have issues walking, you don’t realize that the sidewalk is slightly slanted and is not completely flush.  Also, my legs don’t work when I am upset.

I said to Tom “I think I am going to need a wheelchair to make it to the MRI.”  Now, they always offer and I always refuse.  Once,  years ago, I told him I needed a chair and  he told me if he had to carry me, it wasn’t happening.   He said,  I was going to tell you that we need one but thought you would be mad.” Oh well.  When we arrived, the research assistant said, “let’s get you a wheelchair.”  I nearly burst into tears. Ironically, there’s an underground passage.  I could have walked it but we definitely would have been late.  And it’s longer.

Now here’s the funny thing, I fall asleep during MRIs.  Yup.  No problems.  See, no one can get me there.  No one can call me or email me.  They tuck me in with a nice blanket.  Could a girl want more?  I was signed up for a special one. This time, they made me wear two gowns.  LUCKY!  So, now is the fun part.  I don’t have spectral leg, cane or glasses.  They have to carry me onto the machine. I get my nap.  They pull me out.  I am used to this drill.  They usually reposition  me and roll me back in.  Not this time.  We do the carry thing into another room and machine.  Ah, that explains the double gown!  I settle in to a new machine.  They pull me out again.  The machine is broken!

Back to the wheelchair.  And onto the neurological tests.  Well, first I do the physical .  My now usual stumble. The thing with the neurological tests is they are usually the same.  They read a list of objects and I tell them the list back.  I am really good at this. I remember from year to year. LOL.  This year they changed the list.  Hey, I aced it, no mistakes.  There are other tests which I also remember.  One I particularly dislike  is 6 shapes that you need to sort into 2 groups of 3.  I miss some usually.  This time I did more combinations than ever.  My mind is not declining.  Researcher said she won’t tell me what I missed ’cause I’ll remember next year.

Being in a wheelchair was  weird. I felt diminished. I was lower than everyone.  People moved out of our way. Moving without doing anything was unsettling.  On one hand, it was stress-free; on the other it was awful to think that I had come to that.

This cannot continue.  I cannot give up.  I don’t know what to do.

Visibility Disability

Posted on by tresswann

I have always been visible.   Part of it from an early age has been because of being interracial.  Especially when I was a child, people look at you and your parents.  I come from a strong maternal line.  My cousins and I range from blonde to deep brown.   We have the same face.  On the rare occasions when we were together as teens, people would do double takes.  The eyes processed what the brain could not.reima-1959-grandma-made-the-dress

Susan, Peter, David, Paul

My mother, being a colonial of a certain age, brought me up with certain attitudes and expectations.  A lady did not leave the house without hat or gloves.  So yeah, there I was in NYC, in the summer, in the subway, with gloves.  And a hat.  Actually, not such a bad thing.  I have to tell you though those gloves were a bitch to keep clean!  The hats.  I love hats and used to look really good in them.  My mum wore them, too.  So, we could be out, at the grocery or mall, hatless and someone would walk up to us and say “oh, you’re the ladies (girl) with the hats.

Fashion has been my life and consuming interest. I used to work in it and have been privileged to attend pret a porter.  Can I tell you, I was noticed there, too?  Very proud of that one.  I used to go to Europe regularly for a job.  I went after losing it and had a call when I returned home from a former colleague ” You were in Spain and Italy a few weeks ago”  Yes, I was noticed.

Another thing I am known for is my smile.  I like to share my joy.  When I returned to another job  I  was approached numerous times because my smile was missed.

So yes, I am used to being noticed but now is different. Now, I am noticed because of the cane  ( I hate that word) and the spectral leg.  That has become what makes me stand out.

When I was still working,  I worked in a JP Morgan Chase building.  The security guards watched out for me.  One used to see me walking in the morning and help me cross the street.  It made me feel like a fragile little old lady which I am so not, at least in my mind.  If I went out to lunch at the rear of the building, he’d make sure I got on the escalator safely then run down the stairs to help me when I came off.  Another one, a woman, who went to another building, would see me crossing and yell at cars and people and help me.  One that saw me in the building  always worried  when I was on vacation or out for a few days.   She too, would help me up the stairs.

I have been out of work in NYC for over a year.  As I said, the newspaper hawker was glad to see me a few weeks ago.  In December and January, I had to go in and take the same bus and train that I used to.  My husband was overwhelmed by the people who came up and spoke to me and were glad to see me.

I don’t like being visible in this way. To me, It’s not positive. I don’t like being recognized for disability; I’d rather be known for my smile or my style.  I understand that people respect and admire my grit and determination.  This too, is hard for me.  I am just living my life the only I know how to and the only way I can.  It’s not inspirational; it’s just life.  My issues are visible.  Others confront much worse things just not as publicly.

I guess I need to continue because I demonstrate the possible.  I can be a voice and a face against discrimination.  I hate when people speak loudly to me.  I want to say, “It’s my legs, stupid.  There’s nothing wrong with my brain.”  I suppose if my visibility with disability helps others, it’s worth it. Visibility is here to stay.

Doctor’s Visit

Posted on by tresswann

I bit my nails until a few years ago.  I mean chewed them.   I used to commute with my mother and she used to smack me when I bit them.  This was odd because not only was I an adult but we were different colors.  A few years ago I just made up my mind and let them grow. It was the look my mother had always wanted to see – long thin painted fingers.  She had passed away by the time I accomplished this.  It has become part of who I am.  At the salon, they told  me my nails were very strong .  Apparently, this is the case for former biters.

This past summer in August , my youngest stepson was married and I had them done.  They were perfect, no cracks.  They kept on growing.  I had talons.  They were uncomfortable.  We couldn’t cut them at all they were that hard. So, back to the salon.

What does this have to do with my condition? Well, almost three months ago I started megadoses of  biotin.  Biotin is used to strengthen your nails and hair. Also. maybe myelin repair.   Guess what?  My nails are snapping like crazy.  They are back to short.  My thought,  if this is happening to my nails, what about my bones?   My hands don’t look like me, along with others parts of me that are changing.  This was a little vanity for me.  The doctor said it wasn’t the biotin but the steroids still in my body from the Rituxin.  Guess that’s the little weight I’ve gained.

Recently , because of changes in insurance, it became necessary to cut  Ampyra to one time a day.  Frankly, we thought it wasn’t really working.  Well, quickly found out one a day impacted me badly.   Luckily, insurance sorted out with a day to go.  I  was so scared.

My right leg is the one with  the problem but lately my left knee has been killing me.  Did I say that I did go to an orthopedist last year for my foot – more on that below and wore beaded capris during the scans?  He was fascinated as he didn’t know what those little things were.  He couldn’t help me with the foot as he only does knees and hips.  He said the top of my knee was mildly arthritic.  Well now, somedays it is excruciating. It also  collapses unexpectedly.   My doctor says it’s not the condition.  The collapsing thing I thought was.

I did do my usual timed walk. It was AWFUL.  I really hadn’t changed my pace prior to this.  This time I walked like a toddler!  I told the doctor that and she said “But you are an adult.”  Exactly.  No comfort.  Apparently, part of the problem  is that I am hyperextending my left leg.  Her verdict I need an orthopedist.  Me – knee brace via Amazonprime.  In February 2008 I walked into that office in high heels.

More aches   and pains.  Recently and inexplicably, I have had sudden cry out loud stabbing pain.  Her verdict? Some nerve thing, you should see an orthopedist.

Next issue.  Since last winter I have experienced a burning sensation in my right foot, particularly when I wear tied shoes.  The GP suggested it was a condition thing.  I was also told it’s in my mind.  I only know that it feels like my foot is on fire and if it happens in the car I can barely drive.  Another suggestion was the spectral leg wasn’t fitting. To me, it has felt like a deep blister.  Well, I played around with corn removers and wart removers.  It’s not in my mind.  I took a picture which I will not share which is truly disgusting but shows that I have what looks like a deep bruise and bleeding.  Verdict:  Orthopedist!

One thing that I realized during this trip to the doctor is that at this point, I can no longer work in NYC.  This is devastating to me. I make more money in the city.  It’s more open.  There’s a vibrancy there.  Okay, this time I could drag myself up onto the bus without help but I couldn’t really walk by myself.  If my husband hadn’t been with me, I would have been pushed or fallen.  My world narrows.

On the upside or at least I am looking on it as an upside, the newspaper hawker called out to me.  “Good to see you again baby.”  This is the woman who picked me up off the sidewalk in front of the station about four years ago.  People recognize and support me in my struggle.

Also, on the positive side my doctor has offered to come into work early for my next exam so I lose less time at work,  See above – support in my struggle.