autoimmune diseases

Route 66

Posted on by tresswann

So, this year I’ve been on Route 66. I am lifting this from a high school acquaintance who used this term for being 66. We were not friends in high school. I was weird and she was different, tougher. I loved the fact that she wore purple socks with her gymsuit every week. It was a small act of defiance. As adults, we speak to each other during high school reunions. I wasn’t going to the main event one year, just stopped in at the pre-event for a drink. She told me she was disappointed in me because we had to show up, we had to show that we had survived high school. Well, I certainly have survived high school. It was a time in my life, but it is a time in my life that I do not look back upon fondly. However, I am deeply grateful that I did not have to go to high school in this current era.

I’ve been on the real Route 66. It had always been on my bucket list except we never used that term. It was merely a list of places we wanted to go to and things we wanted to do. I have been blessed to have crossed many things off that list. My best friend and I were in New Mexico on vacation. Times are different now and we were more innocent and dumber, despite the fact that we were in our 30s. We retained a positive outlook on the world. This is not to say that the world had not harmed us or that bad things had not happened to us, they had but we had dusted them to the side. Our New Mexico trip was one of the best I ever had. We were young, irresponsible with money and drove all over the place. We loved the road. It’s part of that Route 66 mystique. To this day, I get a thrill seeing the open road in front of me. We found ourselves back in Albuquerque before we had to leave for New York. Another thing we loved to do was drink and we certainly weren’t driving. We had become friendly with the bartender. Bartenders usually liked us, not only because we drank but when we were around, men also drank. This bartender was different. She was a woman. As such, we had a different relationship with her. A cowboy came and sat down next to us. He was fascinated by us and bought us drinks. We were hard drinking women. We drank strong Scotch, unusual for women. We are special, unusual women. I remember what we wore. I define my life by clothing. My BF had a short pink wash denim miniskirt with a pink and white vertical stripe shirt. I had on my favorite black halter dress. He asked, with genuine curiosity, if I was wearing any underwear. Funny enough, I don’t remember the name of the cowboy. He liked my BF. Somehow, the topic of Route 66 came up and he volunteered to take us, to a cowboy bar, no less. We consulted with the bartender who assured us he was safe. And off we went into the night. We clambered up into his pickup. This was real! And then, he pulled his gun out from under the driver seat and told us we would be safe with him. This was back in the day when you could drive drunk relatively safely. In other words, unless you were weaving madly, he would not be stopped. I had never seen a gun in person, nor have I ever seen one again. Can I say I was freaking terrified? I thought I am going to die because we wanted to see Route 66. Route 66 was a neon blur.  All’s well that ends well. We arrived back to the hotel and the cowboy tried to take my BF off the elevator in his arms. I demanded he put her down immediately. I have felt badly about that for years. However, recently I found out that she was glad. Well, that’s less weight to carry around for sure.

Reaching Route 66 has been quite a journey. I have been blessed to travel. I have been privileged to see so many things. I have seen Basques dancing outside a church in Barcelona. I have seen real flamenco in Madrid. I’ve been propositioned by Mike Tyson’s people in Tokyo. I have been driven all over Taiwan. I’ve been to an alligator farm in Taiwan. I’ve been to Punto del Este in Uruguay. We made the bus go back and forth over a Gaudi bridge. The bus had an award winning high school singing group from somewhere in South America. They sang Bruce Springsteen’s “I’m on fire” in English although they did not understand a word. I’ve seen tango danced by real people in Buenos Aires. I have attended ready to wear in Paris more than once. I survived hurricane David on the beach at Club Med in Haiti. I’ve been invited to private views at museums. I have seen The Rolling Stones twice, once for my 30th birthday and once for my 50th birthday. I loved a postal postal worker and he loved me. I have been so very lucky. I didn’t know what it was at the time. But now I am on Route 66 and looking back. One of my friends said about 20 years ago or so that we should have written a book, “had I only but known”. It kind of sums it up.

And it wasn’t all the physical, material journeys. I have had the best, the very best people in my life. I have been lucky enough to recognize that. So much love and support. I had a dream of knowing people from all over and it has happened. It’s wonderful. I used to take books out of the library when I was little about different countries and I wanted to learn different languages and I have!

What I didn’t account for was the presence of AA’s in my life- Alcoholism and autoimmune disease. My husband has one and I have the other. Actually, alcoholism is a family disease, so I have two. Not so lucky. A change in the bucket list or the dream list or whatever you want to call it. I am almost completely immobile. I can no longer say that when I sit down, I feel like me. That is no longer the case. I look in the mirror some days and I see a little old lady. Who could she possibly be? It’s me. This is much the same sensation as when I would catch a glimpse of an adult in a window and realize it was me. My insights no longer match my outsides. Inside, I am not a tiny grey haired lady in a chair. I am vibrant and not immobile. I still actively engaged with life. I keep on learning. I have also come to realize that I have a lot to share. The events and experiences of my life have value to others. In sharing and examining, I also gain additional insights into myself. This both pleases and scares me.

So, Route 66 will end in a few months but not for me. I still plan to be that woman travelling down two lane blacktop whether it’s virtual or in the real world. I will continue to make stops along the road that will both terrify me and help me continue to grow. I am going to get my kicks on Route 66.

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.

Out of Work Summers – Beach and Bleach

Posted on by tresswann

I am writing this from my laptop in the backyard.  I am sitting in what we call our screen house so I am protected from the sun.  There is a delightful breeze.  I have been unemployed for 9 months; second longest period so far.

In periods past, I would be just returning from the beach.  Due to this condition that has been closed to me for now.  I can no longer tolerate the heat nor can I walk on the beach.  I used to find solace, peace and joy at the beach especially when I was out of work.

I started my unemployment  career in the garment district.  I went in and out.  Then I ended up at a major company and wa there for almost 9 years.  I loved what I did and was excellent at it.  The 90’s happened as did a merger.  I was treated in a textbook/case study manner.  I stopped getting invited to meetings.  My work was taken away from me.  I was let go with severance.  It was the end of May.  All my associates were let go after me.  I was grateful for this as it angered me and I would have been fired.  They let go a woman who had been there for almost 20 years.  She was paid less than what I used to expense for lunch and dinners weekly.  Ah, that expense account.  For nearly 10 more years, I didn’t make as much as my expense account.  I’d clear out my files and cry as I shredded the expense stubs that were larger than my current pay stubs.

When I lost that job (and I hate that term, I didn’t lose it, it was taken away from me) I was depleted.  I headed to the beach and spent so much time there my naturally dark hair bleached.  I also decided that I was going into business for myself.  I wanted a company that would never treat people like my low paid friend that way.  I have a great sense of what  is going to be popular fashion-wise and I had made connections literally all over the world.  I reached out to my network and received enormous support. What can I say? Great idea.  Wrong time.  Poor capitalization.  I showed merchandise to Brooks Brothers and was told it was too forward; try Paul Stuart. I had an existing relationship with Paul Stuart and was told it was too conservative; try Brooks Brothers.

I became seriously depressed and got married.  Bad, bad choice.  It was not convenient.  I made more money on unemployment than he did working.

I fought my way out and up and ended up part time at a financial services firm.  I was over a thousand hours and forced  to take nine weeks unpaid leave.  It was summer.  I hit the beach and the want ads.  Again, I bleached out.  I had an interview with a company that wanted someone who could do what had been done for my fashion employer.  Uh, that was me.  I came up with a portfolio of designs to show them, arguing the whole time with the late Joebe who wanted to impose his personal taste on the process.  I arrived at the interview deeply tanned from my beach time.  The interviewer took one look at me and said “Obviously, you are not seriously interested in working.”  He wouldn’t even look at the hours of work I had put in.

Fast forward, that  company made me permanent but I left after almost 7 years for the monolithic Bank. Finally, after 10 years was making a little bit more than those old expense account checks.   After 4 years, I was let go.  Back to the beach and back to bleaching out again.  And I married, again!  But this time I knew I would be working in the fall. It was a dream job at a major retailer making more than I had.  I also started moonlighting at the Bank.  What could go wrong?  Chapter 11 at the end of May.  For the 2nd time in two years, I was off for the summer.  Yup, beach and bleach.

Except for the first time at the end, I  was optimistic.  I had ideas and possibilities.

This time, I was let go in the fall after a total of 15 years.  I didn’t have the same hurt I had had with fashion.  My associations were different.  I was optimistic and calm.  I didn’t want to do my own business as I had done previously but actively look for work.

What’s different?  The Internet and my scads of experience.  Even if I was able, no beach and bleach for me.   I spend hours daily sometimes including the weekends looking for a job.  Today is one of the only days I am taking a “break” and writing.  What’s also different this time is that I am getting really good interviews.  What’s the problem?  Well, I am mature.  Experience costs money.  “We want you do but with someone out of college.”  Good luck to ya on that.  Didn’t you hear “You get what you pay for.”  And then, the elephant in the room.  My mobility.  There is nothing wrong with my brain.  I participate in research studies and I can remember the answers I missed the previous year!

It’s summer.  I HATE this condition.  It is taking so much away from me:  no beach and bleach, no walking, no gardening, no JOB!!  I need to channel that sense of optimism and possibility again.  I need to recharge without the beach.

 

June/July 2016 Check In

Posted on by tresswann

goofed.  I started this in the first few days of June and then stopped.  I have been blue, angry and pre-occupied.  It should be easier not working to be timely and thorough but somehow it’s not.  I am looking for the spark and the peace that seem to have disappeared.

Wow, I was checking my records and saw that last year I was interviewing and bombing out. too!

How did I feel this past Month?

Still blue.  There was no activity at all job wise.  This is depressing .  I also feel my health deteriorating.  I am not sure if this is a symptom.   The WEDDING  looms.  My stepson is getting married and it’s just going to be ugly on all kinds of levels.  And I continued to be blue through June also although jobs picked up.  I interviewed at three companies in two days and came up empty.  I was reminded I have a major reunion coming up next year.  I want to be able to walk and don’t see that happening.  My friends are retiring and/or having grandchildren so I am fighting regrets.

What did you do for yourself this month?

In May, I  did attend a professional association event.  I was surprised that I liked it.  Goes to show that sometimes you have to let go of assumptions. I also realized  that I had let part of my life go.  I have been  isolated.  I did sign up for two events back to back in June and then didn’t go.  The first one was for a cocktail party at a professional association. It was at a golf club.  The last time I was there was over 20 years ago in a blizzard.  The late Joebe had a DUI conviction and was finishing community service there. It’s beautiful, wooded and slightly hilly.  It was not fun driving his Camarro.   At the last moment last month, T decided to come with me and sit in the car as he thought due to said hilliness, I might need assistance getting in.  It was a beautiful evening with bad directions.  When we finally found the clubhouse there was only valet parking or far parking. I  would have been shot by the time I walked in so we left.  The next night was another professional event but I wimped out as it was rush hour and the Long Island Expressway.  I grew up with parents who had a terror of the expressway.  I have been working through  it but not at my strongest.

Trying to get back in touch with my creativity but feel too cluttered.

What did I eat this month  and how did it make me feel –

Still doing my Smoothies.  Cheating a bit on good eating but getting back into it.  When I eat well, I feel well.  When I am blue it just falls apart.

Did I exercise?  What did I do?  How did it feel –

The gym has become my new happy place.  However due to blistering in my two day three company interview marathon, I am hurt and can’t wear shoes.  I lost the gym for over 10 days.  I went two days and reinjured my foot.  I am weaker.  It’s a vicious cycle.

For whom or what are you grateful?  What matters most in life?

I am grateful that I am still hobbling along.  I am grateful that despite not working the mortgage is paid and we can eat.  My stepsons came through for me in an awesome way with the blisters.  I am told and shown, I am loved.

Do I have a higher purpose or driving force in my life?   Make a mission statement –

No mission statement as usual.  I’ll co opt what I tell my little “elves”- spread joy, do good.

Conventional medicine  Still just Ampyra and Baclufen. I am looking forward to Opera in the fall.  I have just been told about Colostrum and am thinking about giving it a whirl.

Symptoms – Ah, the Raynaoud’s.  The doctor was quackery so I am just coping on my own. Getting weaker in my hands.  My balance may be getting minimally better.

What symptoms are most troublesome  – Independence and mobility.  Hands not working

Do I blame myself for things – Yes, I am still believing it’s food, stress and exercise.

How is stress level?  Very bad.  I think I have reached my limit.  Not working is impacting me on all levels.  I have an enormous amount of anger which I don’t like.

What can I do tomorrow to make it better than today?

Think I am going to get a “tune up” with a therapist.  Amp up the physical therapy, exercise and right eating.

Red Shoes, Blisters, Mom

Posted on by tresswann

I am fascinated by shoes, especially since I have mobility issues and can’t  wear what I want.  Now I do have my fashion fetishes  though shoes are not one.  That was my mother’s.  She thought of herself as an Imelda Marcos of shoes.  Couldn’t walk past a shoe department.  If I had anything, it was probably the irresistible lure of flip flops.  Still, certain shoes have marked certain times in my life.

I hate now that I have to wear flat, primarily oxford shoes.  My goal is not to look orthopedic or old.  This winter I bought a nice pair of metallic  slip ons at Clark’s.  Normally, this might be a Sunday afternoon jeans kind of shoe but it’s my alternative to my shiny black male bankers shoes.  It’s been comfortable in the winter.

Another factoid about me.  I like to go shoeless and barefoot.  Years ago, I worked for a man who said, “Sweetie, I pay you enough to wear shoes.”  I was known for being in meetings and taking them off.  I used to have really tough feet too due to going barefoot all the time.  The one place I really perspire is through my feet.  So, I never wear hose with shoes, if I wear shoes when it’s warm.  Things have changed and I cannot leave the house without the spectral leg and hence the ugly shoes.

I had interviews with three companies over two days in NYC this week.  In the past, these would have been in great locations and all walkable.  And it was in the 80’s.  Technically, according to my doctor, I am not supposed to be in NYC in that kind of heat.  On Monday, I had to walk 2 blocks and a bit to my 2nd interview.  Caught a cab back to Penn but walked a little further than normal.  I had the beginnings of a blister, the Clarks with no hose.

The other thing that has been happening with this new spectral leg is that the bottom of my foot burns.  It feels as if it’s on fire.  I can’t take the shoes off by myself.  Well, actually I can take them off, just can’t put them back on.  This adds to the irritation as I try and wiggle them around.

Back for the second round on Tuesday.  I don’t want to look too formal but because it’s an interview I can’t wear the gladiator sandals that work with the spectral leg.  Back into the Clarks with bandages.  By the time I get off the train I realize this is not working.  Ever resourceful, I try to shove lidocaine cream and tissues into the shoe.  I have long nails so this isn’t primo either.

The interview is on Broadway, literally a block and a bit from Penn.  However, I don’t want to arrive staggering.  Due to blister I miss the bus and have to stand out in the hot sun for 8 (I counted) minutes.  So, when I take the bus one stop and have to cross the street, it’s not going well.  I then interview with two different people on two different floors. What do I do in the waiting room?  I lust after the other people’s shoes. I see someone with red -soled Louboutin’s.   A beautiful  flat  strippy  sandal.

There is no bus the other way and it takes me almost 40 minutes to walk the block back.  A businessman on 32nd Street asked me if I needed help and when I said “no, one step at a time”, he told me I was still pretty.  Being vain, that brought a smile to my face.  However, by the time I started to cross 7th avenue, I needed help.  An homeless veteran helped me the last few feet and one of the sightseeing bus hawkers helped me to the escalator.  I missed my train but continued to stagger through Penn.  Walk ten steps, rest 30 seconds.  I made it to the wall of the police substation.  They noticed and an officer let me sit on the bench inside.  It helped enormously.  Staggered to the train and then down the two flights of concrete stairs to the car.  I did not cry.  Just kept powering through.  Tom nearly cried when I got in the door and took off my shoe.  He wouldn’t even let me get off the chair for an hour.

My foot is a swollen, infected mess.  I did well on the interviews despite that.

This brings me to a memory.  I lived almost two miles from high school and I hated it.  I did  frequently what I am known to do.  I walk away.  Well, now I really can’t but voting with my feet is the way I have handled my life.  So, I used to literally just walk out of school.  Sometimes, I’d go back.  I was also brought up to be my own person and not go with the crowd.  But high school is still high school.  I bought a pair of red suede baby huey shoes for $3 at Thom McCann.  This was huge.  My allowance at the time might have been $1 a week.  I am also my grandmother’s child.  She was a precursor of the “It’s better to look good than to feel good” school of thinking.  So, I wore my hard as rock red suede shoes with a fine wale lavender corduroy pant and lavender Missoniesque body suit to school.  Decided I didn’t want to be there and left.  Halfway home I felt hurt.  Pre-cellphone plus I was cutting school.  Arrived home and my gran and dad were horrified (Ma was at work).  The hems of my lavender pants were red and matched my shoes.  Not only had I burst blisters but had gone almost to the bone..  I literally couldn’t go to school for three days.

Which brings me to me and Ma.  She always told me she had a high tolerance for pain.  She said childbirth  was vastly overrated.  She used to have her teeth drilled without Novocain.   And the implication always was that I couldn’t.  Yet, look what I have done even going back that far.  I just sucked it up and kept on going.  I do deal with pain and uncertainty.  I need to acknowledge I am brave.  I keep on going and ignore the inconvenient.

On the down side, I was practically in tears going to Penn this week.  I used to walk to midtown in a third of the time it took me to walk one block.  I HATED looking and acting like the fragile elderly.  I REFUSE!

Sliding on a Sunday Morning and Reflecting

Posted on by tresswann

t’s a slightly dreary Sunday, rainy.  We usually sleep till  around 7:30 a.am.  Tom got up at 6 to go to the bathroom, triggering the same in me.  I tried to getup but couldn’t sit up.  I need to pull myself sometimes with sheets.  I asked Tom to give me a push up.  No problem.  Then when  I tried to get out of bed instead of standing, I slid gracefully to the floor.  This is usually not a problem.  I  stand up like a toddler.  I grabbed the edge of the bed.  Not happening.  Tom wanted to help.  Sometimes, when I need to get out of the tub at night, he has to come in and help me bend my right leg so I can stand up.  “I need you to do the same thing as you do in the bath.”  He comes over, pulls my leg up and as soon as I try to pull the other one, the right collapses down.  We do it again and this time it jumps uncontrollably and collapses again.  One more time and the leg is jumping up and down even worse.  The first time this happened was in my neurologist office.  I swore at the time it was something he had done to me.  It happens periodically when I get dressed in the morning.  I usually just put my hand on it and stop it.  Tom says, “Isn’t this why you take the Baclufen?”  No, that’s for the spastic thing I do where my body tenses up and I walk like a Zombie.  It’s been happening more the last few days.  Nerves, I thought.  So, Tom pulls my right leg up again and it’s out of control and he has to press it to stop it.  Think of a tuning fork.

He has to walk me to the bathroom.  It’s only 10 -12 feet.  My issue becomes that sometimes in the morning I have problems getting up in the bathroom.  I don’t want another set of grab bars.  It’s insidious defeat.  Every once in a while which is mortifying I have to ask Tom for help.  This morning we anticipate the worst.

Now, I have to call out to my fellow blogger BBH with MS ’cause she discusses bathroom issues frankly.  Let me describe my situation this way: It’s like I can turn on the faucet and most times I can turn it off but sometimes I can’t tell if the tank is empty.  It pours out of me, that I feel, and then it just keeps on dribbling and dribbling.  Mind you when this started this morning, I was in a cozy sleep.  We had just changed the sheets to the high thread count Egyptian cotton.  It’s like sleeping in a lovely cocoon.  Well, that’s done. Luckily, I can stand up by myself in the bathroom.   Tom helps me get back into bed.  My right leg feels totally numb.  And this is the moment he decides to be amorous!  Are all men adolescent boys?  The only thing I want is to get feeling back in my leg and salvage some sleep.

Which brings me to reflection which may have brought on this whole spell.   Yesterday, I opened Facebook and it let me know I had a memory.  Did we remember before Facebook?  I had posted a picture of Jeremy’s college graduation picture with us five years ago.

DSCF0257

So, a couple of things:  I am relatively tiny in this picture.  I always think of myself as tall and huge.  The next thing that hit me is that this was on a grass field.  We returned early from our vacation to attend.  I had walked on the beach and felt normal.  It was a glorious moment.  Yes, it took me a bit longer to reach our seats on the grass at the graduation but I was walking without a cane and without the spectral leg.  Again, the deterioration has been insidious.  I am told I really haven’t deteriorated.  REALLY?  Ok, so I am grateful that I still can get around but this is so far from alright.  It is not alright!!!   Back to fighting and clawing back, one step at a time.

The Rheumatologist

Posted on by tresswann

Since this journey started almost 8 years ago, I have been looking for a good rheumatologist.  Actually, I did have one.  She was originally my mother’s.   It upset me that I had started down this path.  This was in the early days when I was still looking for a diagnosis.  She tested me for everything.  I tested positive for everything.  Well, Sjogren’s, Lupus, rheumatoid arthritis for starters.  I cried.  She hugged.  She told me I was asymptomatic.  Also, it wasn’t unusual.  She said that one disease could open the door for others.  Not to worry, I wasn’t considered progressive.  Three visits in, she retired  and moved to North Carolina.

Move forward almost a year.  I really thought I  needed a rheumatologist.  I am known for my smile.  Inside my lips started to hurt.  I could no longer smile.  Lipstick hurt.  I am also a makeup kinda woman.  My neurologist told me not to take hot baths, my favorite form of relaxation.  My ability to walk was fading.  I felt everything I loved was disappearing and being diminished for me.  At this time my mother also seemed to be deteriorating.

I went to the “replacement” rheumatologist.  First, he looked like he was 12.  Being a Hopkins (non-premed) graduate, I understand the importance of newly minted doctors.  I also understand that after a certain age everyone looks 12. But… he walked in with a laptop and I kid you not, surfed the Net  with my symptoms.  He gave me 5 possibilities – lupus, menopause, herpes, stress and something I forget.   Left in a hurry.  The symptoms had been easing anyhow.  A couple of days later I found  out my mother was dying – flare-up!  It was stress.

Next,  I contacted a roomie from college.  I said I went to Hopkins.  I went to school with a sh*load of doctors.  I see her every five years or so at homecoming.  She became head of rheumatology at a teaching hospital in NC.  I call her office and leave a message that I’d just like a referral, just a referral.  Still waiting…

Even my neurologist has said for the last few years I need a rheumatologist.  I have a friend who is also host to myriad autoimmune eruptions, disruptions and events.  In December, she looked at my right hand which unbeknownst to me was purple and beyond cold.  She warmed it up and announced you have Raynaud’s.

I am taking my usual happy hot bath one night in winter.  My extremities are always cold and always have been.  I wear socks to bed most of the year.  Over the past few years my feet have been getting worse but they warm right up in the bath.  So, I get into the bath and notice my hands are freezing and they are not white, red or purple but sort of dead looking, an  awful non-color.  I plunge them in the bath and swirl around and nothing.  They do not change! It must have been 5 minutes or more before color came back and they stopped hurting.

Fingers started changing color more frequently, especially my middle left hand finger.  Then at the end of March I stood up at the table with Tom right next to me and did a bizarre collapse and fall.  I really hurt my left pinky.  Tom made me a splint with a meat skewer.IMG_0919  I went in for research study and MRIs.  The doctors were much taken with his work.  My middle and ring finger started to go dead several times a day!  By the time I went to my neurologist, Tom had perfected the splint with a smartphone stylus replacing the skewer.  She says next time I fall like that I need to go to urgent care and uh, you have Raynaud’s.

This brings us to today.  I asked my autoimmune friend for her rheumatologist who also practices alternate medicine.  He is not covered under my health insurance.  No surprise on that one.  But I believe there are certain things you don’t skimp on.  Last year, my neurologist wasn’t covered under my insurance.  This year, she is free!  This guy is several hundred dollars.  He sends me a thorough and complex questionnaire on line.  I literally  complete 28 pages of questions!  I appreciate this as my handwriting has always been awful and lately my hands don’t work well all the time.  We get there today and I have to fill out another sheaf of papers.  They explain their systems don’t always cooperate.  No waiting and the nurse walks me back.  She weighs me and says “You’re tiny!”   High point of the visit.  The last time anyone said that was my other college roommate after not seeing me for 30 years.

I have on the spectral leg and my cane aka walking stick.  Doctor walks in with laptop.  Tom flashes back but then sees he is using it to pull up records and take notes.  He asks questions and asks about blood work.  I don’t have any recent.  I  say I am here because my neurologist and friend say I have Raynaud’s.  He squeezes my hand and says my self-diagnosis is correct.  He doesn’t look at my feet. Nothing.  I need blood work to see if anything else may be going on.  I tell him that one of the reasons I chose him was that I understood he also practiced alternate medicine.  He does and goes into an explanation of auricular medicine.  Tom practically starts to levitate.  We grew up differently.  I have to be near death to take an Advil.  He is one of 5 children and any drug is a good drug.  Herbs are not doing it for him. Doctor says ‘Oh, you don’t like going to doctors?”  That is not my issue.  I go to the neurologist, gynecologist and eye doctor regularly.  I explain about Hopkins and how I saw them in their formative years so, I can be wary.   I get the scrip for the bloods, say goodbye and then doctor asks why I am using a cane?  Cripes, I had to be helped onto the scale. We had discussed the MS diagnosis earlier in my 10 -15 minute visit.

Back to the drawing board,  I need a rheumatologist.

 

May 2016 Check In

Posted on by tresswann

How did I feel this past Month?

On the blue side, with ups and downs.  The job thing is destroying me.  I get interest and interviews and then I crash.  April marked 6 months out of work.  It is now going to get even harder.  Yes, I am a mature woman with a gimp, a very stylish walking stick and not cheap.  On the upside, I connected with Meg’s blog http://www.bbhwithms.com/

Her blog is a must read and has given me so much hope.  It’s great to know there’s someone else out there.

I am reflecting on how I got onto the wrong track or the track I didn’t want to end up on in my life.  I walked away and now I can’t walk.  Something to ponder.  So, how much of my job situation is attributable to me.  Some, I think.  I became just a tad complacent.  I am looking back in order to move forward.  I feel time catching up with me.  It’s finite.

What did you do for yourself this month?

Still playing arts and crafts.  I did take a finger knitting class.  The only other attendee was a great grandmother who bent over and accidentally mooned the whole store.  I am reading more which gives me joy and peace.

I also have started playing with more smoothies and a reset detox.

What did I eat this month  and how did it make me feel –

Well, a definite emphasis on smoothies.  I expanded my repertoire.  I also did a Simple Green Smoothies Thrive  reset hoping to get me back on track.  I definitely deflated.  I couldn’t eat all the food as I was too full.  I paid no attention to the different autoimmune diets but it covered the bases – no sugar, no gluten, no caffeine, no dairy, no meat.  I could definitely eat this way.

Did I exercise?  What did I do?  How did it feel –

No Zumba but more gym time.  And I have the new Fitbit Alta which is helping me with my steps.

For whom or what are you grateful?  What matters most in life?

I am so grateful for my friends who keep my head above water.  Every night I list gratitude for at least these five things:  friends, mobility, possibilities, wherewithal, creativity

Do I have a higher purpose or driving force in my life?   Make a mission statement –

Getting closer to that mission statement,  My grandma told me (it was Shakespeare but who knew?) To thine ownself be true.  Tis like the night, cannot be changed.  That works for me

Conventional medicine  Still just Ampyra and Baclufen.  And my doctor says there is a drug that will be available in the fall that will work for me.

Symptoms – Hands are still  getting weaker.  My hands and feet are multi-colored.  I have an appointment next week.  My neurologist looked at my hands and said Raynaud’s.

What symptoms are most troublesome  – Independence and mobility.  Hands not working

Do I blame myself for things – Yes, I am still believing it’s food, stress and exercise.

How is stress level?  It’s amping up with no work in sight.  Summer is coming.  Ouch.

What can I do tomorrow to make it better than today?

Never give up! Never!  Defy convention.  My mother always said I conformed to non-conformity, so be it.

Why I Didn’t Go to the Gym Yesterday

Posted on by tresswann

I had every intention of going to the gym yesterday.  I am encouraged that my doctor found that I am a little bit stronger and a little bit faster.  I need to leverage that.  And since I am not employed, I have been losing ground.  Yes, it’s nice not to have to struggle through Grand Central, Times Square and Penn Station on a daily basis.  But easily having 7500 – 10,000 plus steps a day is a benefit to someone like me.

My Jawbone Up tracker has not been working so I have been unable to get a real reading on what I have been doing.  I splurged on a Fitbit Alta.  I am eager to see how that goes.

Also, last week I started adding in the stationery bike on my doctor’s advice.

I like to go around 2 o’clock.  It’s all the old people.  It’s fairly empty and relatively quiet.

As I may have mentioned, we have been having issues with the used car lot that sprung up next to my house and the town.  We have been at odds for three years. The car lot does thing illegally and then the town makes it alright.  In recent weeks they cut down a beautiful old oak tree on the edge of our property on Easter Saturday claiming alternately that it was diseased NOT or that the town required it – not according to the last official meeting.  The last time we called the town, the owner was literally pounding on our door within 20 minutes.  The lot’s MO is to start work on a weekend when Town Hall is closed.  Last weekend they started the fence.  We are supposed to have an 8 foot PVC fence.  Sunday morning someone came up and pounded on the door. Again, we will not open our door.  Most of the fence posts were removed.  Tom goes out yesterday morning to take pictures.  We want a dated history of what goes on.  There’s a guy we believe to be the manager over there.  He comes charging over and tells Tom he can’t take pictures.  I hear the yelling and screaming and come out with phone and start taping.  End of story.    Tom is very upset over the threats.  It’s two old fat guys hurling insults at each other.

Tom always helps me from the house to the car and makes sure I get off OK.  I start to drive off and car lot guy comes into the road and blocks me AGAIN!   He wants to talk about the morning’s “disagreement”  and how he wants to make me happy.  I pull out phone and start voice and video as I have expressed to town everything must now be in writing.  We are talking about a Town Hall that is literally across the street from massage parlors!  Tom sees Rob at the car and thinks I am being threatened.  Ah, male testosterone.  I may be older and have mobility issues but I can mostly take care of myself.  Situation devolves.  I must say Tom is being surprisingly cool.  No mistakes, it’s loud.  Rob snaps and I have him on tape saying let’s go of camera and have this out.  And something about beating his f**king face in. Excuse me?  At this point to my surprise, Tom says I am old and sick and not doing this.  Rob starts to yell, and again, I have this on tape, that Tom is a drunk and the only one he beats up is me.  If you have been reading me or know me, you know that we have had problems but he has never, ever beat me.  Seriously?  Has everyone lost their minds?  And how does Rob know any of this?  At the last public meeting, he told the town that Tom shouldn’t be allowed to speak as he was legally not allowed to be in my house. NOT!!  Yes, there had been an order that was quickly rescinded three years ago.

Tom starts to go back in the house and now manager charges over onto my property followed by some other car lot guys and threatening Tom.  I call out “Get off of my property, I am calling 911.”  Which I do.  911  operator has a hard time because of all the screaming going on but they all realize I am on phone with 911 and by end of call, they are back in lot.

Now, I can’t go to gym because I have to wait for police.  And we have had previous situation with someone with drugs and alcohol passed out across my driveway.  Car lot knew him and have hooks with police.  Very nervous at this point.  Tom is not drinking.  There is an order that he can’t but neither of trust the car lot people or the police.  I can’t file the complaint the cop says because I wasn’t the one who was threatened.  I do have a report.  We will see what it says.  After numerous flats in my driveway, I tried to file a report at the precinct because I felt it was connected to the massage parlor that used to be in the lot.  The precinct translated that one into a message store.

Meanwhile, Tom keeps going off about what he’s going to do. Not restful.

So, no gym and my stress level is through the roof which means my legs are shot.

I am going to try again today.  I refuse to be a victim.   Outside eyes may see me as over 50, frail with limited mobility but that is not who I am.

April 2016 Check In

Posted on by tresswann

How did I feel this past Month?

March definitely was a combination of the lion and the lamb.  I am actively looking for work.  I fear that my age and infirmity are preventing me from getting a job.  Yes, I try not to focus on it but it is the elephant in the room.  Sometimes, I say that too.  Then, my Jawbone hasn’t been working so even though I am not walking enough I can’t tell.  I am deteriorating.  No one likes to hear it or see it.  I fell three times.  The last was a week ago and I really hurt my left hand.

What did you do for yourself this month?

Still with the gym and less so Zumba due to the weather.  I can’t really go out in rain or snow, too much chance of falling.  I have started to write again.  I started journaling in January and am writing in the day.  I have continued to clear clutter.  I am trying to reach out to people.  I am reconnecting with the creative  bits of me, a little writing, a little art.  Decoupage again.  Something I started to do in 7th grade.  I was always good at it.  And I am starting to take some glasses.  It’s both an outlet and a way to meet people.

What did I eat this month  and how did it make me feel –

More smoothies.  A little off the rails with gluten due to holiday.  And a little more meat.  Getting back on track.

Did I exercise?  What did I do?  How did it feel –

More time in the gym.  I am really liking it!

For whom or what are you grateful?  What matters most in life?

Faith helps lots.  My friends are awesome.  Some came into my life, some left.  The ones that are here are my rocks.  My stepsons continue to amaze me with their love and support.

Do I have a higher purpose or driving force in my life?   Make a mission statement –

A higher purpose is kinda grandiose.  I stand by fighting for what’s right.  Hopefully, others can benefit.  Living with integrity and never ever giving up.

Conventional medicine  Still just Ampyra and Baclufen

Symptoms – Hands are getting weaker and my balance is off.  My fingers are going white and numb which is freaking scary.  My right hand turns purple sometimes.

What symptoms are most troublesome  – Independence and mobility.  I also have been falling more.  Part of it I know is  stress.  But the rest of the time, it’s balance. And the fingers!

Do I blame myself for things – Yes, I am still believing it’s food, stress and exercise.

How is stress level?  Well, I am  still not working. So it’s getting to me.  I am able  to sleep later though.  I’d like to wake between 6 & 7 in the morning.

What can I do tomorrow to make it better than today?

Faith, food, exercise.  Creative work. Never give up!!