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

June/July 2016 Check In

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.

Sliding on a Sunday Morning and Reflecting

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

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

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

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

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!!