Falling, Falling, Falling

I have always, always fallen.  As I have previously recounted, I spent my senior year of university on the ground.  I fall when I am upset.  I had a therapist who figured out that I let my feet out from under me, literally.  I fall well because I have had so much practice.  I have also been very, very lucky.  Then we add MC, as I prefer to call it to the mix.  More falling.  Usually, for the MC falls, I know they are going to happen. I start to get an odd sensation.  Or, of course, I trip over something and can’t catch myself.

I fell three weeks ago for no particular reason.  I was on my way to my therapist and ended up on the front room carpet.  Tom couldn’t get me off the ground for almost 20 minutes.  Crawling, chairs and screaming were involved.  I bruised and hurt my hip and had huge bruise on my arm.  On the upside, and if you know me, there is always an upside, I was bruised but not broken.  This means a bit of alright on the osteoporosis.

I vended tea at a psychic fair October 28.  It was a pleasant day and whilst I was in worst condition than I was last year, I was better than I have been.  We splurged and had a lovely sushi dinner and watched a movie.  I was getting ready for bed and Tom was already in. I don’t know about you but my bathroom terrifies me.  Ours is tiny.  The handicapped stall where I used to work is larger than ours.  I have a grab bar by the toilet to hoist myself up or balance as needed.  I was thinking about one last time before turning in when I just fell.  I usually make a little cry before and as I am going down.  I fell really hard and directly onto my rear.  My body knocked the grab bar off the wall.  I landed with my legs in front of me and my back to the door.  In other words, my body wedged the door shut.  Outside, Tom heard me and half asleep in his rush to get out of bed, has fallen on his hip and is having problems getting up.  Of course, he can’t open the bathroom door and I can’t move.  I am in excruciating pain. I think it’s time for 911.  However, based on our previous history, Tom is resistant.  We are both sobbing – me with pain, him with frustration.  With a great amount of pain, I do bend my knees (good sign!) and scuttle forward so he can get in.  I know it takes forever and I know it’s excruciating but somehow we get me onto all fours and then into bed.  I demand my MMJ, Baclofen, ibuprofen, and a Chinese roll-on medicine.  I do sleep.

I am scheduled for an MRI, CT scan and xray for the 29th.  I am the only driver.  It’s literally 3 miles down the road.  Tom has declared in the midst of everything the night before that I’ll have to cancel.  NOT!! I need these tests so that my neck surgery can proceed.  I feel well enough to drive.  The MRI and CT scan are hilarious.  Well, actually not as it involves this young fellow lifting me on and off the tables as I scream.  I did forewarn him.  On a positive note, I did get  a fair amount of steps in.

I have started a new program with the MS Gym plus I do exercises learnt at physical therapy and crunches every night.  It’s so not happening.  I miss my crunches and feel I am like a wicked witch and everything is melting and sliding. My therapist tells me I am a very strong woman. I can agree to pigheaded and stubborn.

Pet peeve:  I HATE,HATE when I tell people I have fallen and they say. “I am so sorry.”  Arghh!  Did you push or trip me?  Did you fail to buffer my fall?  If that is the case then be sorry.  I say I fell because you need this information like for the tests or the dentist.  Saying you are sorry makes me feel pathetic and childlike.  You have nothing to be sorry about.

I continue on and the tops of my hip bones are painful.  No bruises emerge as even though diminished, I have a relatively padded derriere.

The test results are available through the patient portal.  I see “edema” on the report for my lumbar spine.  Hmm, bad fall?  My appointment with  the surgeon is this coming Monday.  This Tuesday evening the phone rings after 6 p.m.  It’s my neurologist, the one who considers patients part of her extended family.  “Susan, have you fallen lately?”  “Yes, two Sundays ago.”  “Has your spinal surgeon called you about your tests?”  “No.” I hear a deep breath and know this is going to be bad.  “Susan, you fractured your tail bone.”  I feel swimmy.  “No, I didn’t.  I bruised my hip bones.”  “No, you fractured your tail bone.  I hate telling you this over the phone.”  I feel like crying and am seriously scared.  Through a haze, I hear her tell me that it’s not uncommon; it doesn’t require emergency care and my approach has been the right one.

Now, my question is, I have had the results for a week.  Why didn’t the ordering doctor look at the results and advise me?  Waiting till Monday? I rang them and the PA called me back.  Oh no worries, just do what feels  right. Methinks, I need a different surgeon.

On the upside, it’s manageable and once again, no breaks.

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.

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!!

April Doctor’s Visit

Well, apparently I was at the doctor’s exactly a year ago and again today.

So,  I am a tiny bit stronger and a tiny bit faster.

I participated in a research study there a week ago.  My MRI is basically the same which is really good.  I know from the mental tests last week that I am more than OK that way.  She reiterated that I have spinal arthritis.

Now,  she  says that I am a tiny bit stronger than last time and a tiny bit faster.  This so works for me.  The gym is working.  She says I need to continue  three times a week!  And I do need to continue with Zumba.  I was thinking of stopping because as much as I love it, it frustrates me.  I seem to be able to do less and less.  When this mess started I used to be in the front row.  However, she agrees that the social aspect is important for me.  I’ll go through the end of this season and see.

On the bad side, she says it looks like Raynaud’s.  My fingers have been turning white.  Just another thing to deal with.

On the up side, there is a new drug that has been tested and works with my symptoms/conditions.  It should be available when I go back.   Down side – it’s an intravenous and twice a year.  We’ll talk about side effects later.  My plan  – get stronger so I don’t have to do this.

March 2016 Check In

How did I feel this past Month?

A very mixed month with peaks and valleys.  Getting a job and maintaining funding has been consuming.  Some days are great, others less so.  I am fighting the blues. It’s winter so that’s not abnormal. The season distresses me.  My condition makes me housebound more than I’d like.  Also, not having income makes us stay at home – no joy-shopping.  I am in a waiting mode.  It’s never easy for me.  Sometimes, I am a slave to that e-mail, waiting for news, for any movement.

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/

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

Back mostly to smoothies.  They really help my system and mitigate my sugar cravings.  I created an alert on my phone to remind me to have fruit in the afternoon and my Bac pill.

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

It’s exciting.  I am feeling achy at the gym.  I am taking it as a sign my nerves are reconnecting.  On the flip side, I seem a little less flexible and continue to experience balance problems.

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

My friends. The gift of faith.  I have been playing with “The Power of Positive Thinking” and it has reconnected me to faith.  The love that is in my life.  My stepson brought me the most beautiful rose on Valentine’s, unexpected and lovely.

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

No surprises.  No mission statement.  Purpose?  Let others benefit by my fight. Integrity.  Principles do count.

Conventional medicine  Just the Ampyra and Baclufan.  Really beginning to get that the right food and rest will do a lot.

Symptoms –  Hands are becoming a problem.  Fighting it of course!  Balance and flexibility which can be addressed with increased determination

What symptoms are most troublesome  – The lack of freedom.  As I write this, the newspaper is in the driveway and I just can’t go out and get it.  My increasing reliance on the cane is hindering me in my job search.

Do I blame myself for things – Of course, between stress, wrong food and not enough exercise

How is stress level?

Still high and who wouldn’t be between money, job and health.  This is becoming my new normal.

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

Remember to breathe. Have faith.  Eat and exercise properly.

Valentines – Get Out of the Kitchen

Well, things have been a bit tough lately with my not working in months.  We have been very frugal and watching every cent.  Last week I went on an encouraging interview.  It was one of those 2 on one deals as well. So, maybe a tad anxiety inducing.  As a treat ( I have a friend who always expresses amusement that I know how to soothe myself) we stopped in at the new Stew Leonard’s on the way home. It’s  a dairy, specialty supermarket.  The first one on Long Island opened not far from us and on the way home.  Feeling optimistic, we splurged on some ribeye steaks and baked clams.

Since Valentine’s was the coldest on record  if not a century, outdoor grilling was a non-starter.  I looked on Epicurious and found a stovetop recipe – 2 minutes on high heat on each side then a wine and garlic sauce.  I have been on the weak side the last few days and have been unable to hold things and off balance. Not sure if it’s stress or weather.  Refuse to believe in deterioration.   T also fancies himself quite the chef.  He said he would do the meat and I could do the sauce. Recipe said 1 tablespoon of oil heated till it shimmered.  “ how do I tell if this is shimmering?”  Mr. Excess had put in what looked like a quarter cup of oil and sprayed the skillet as well.  I said saute, not deep fry.  He dumped some out.  First side seared nicely.  Second side started to smoke and set off our fire alarm.  Cats dived for cover.  We disconnected alarm.  Second steak, first side ,house is getting really smoky.  It is 12 F outside.  T opens kitchen window and front door. T is asthmatic and starts to gasp.  Goes into bedroom and shuts door to try and block smoke.  He comes back out with shirt over his mouth and nose to remove steak.  I start sauce.  Now, part of my condition which has also been getting worse is I get really cold and my hand turns purple and my feet get so cold they burn.  We had worked really hard Valentines making sure I stayed at the right temperature.  At one point I even had on fingerless gloves.  So, needless to say as I am doing sauce I start to shiver and shake.  I make him close the window and door.  Steak was  excellent; atmosphere was smoky but not smokin’ hot.