All posts by mamici1

About mamici1

I am a woman, a mother, a grandmother, a wife, a daughter, a sister, a friend, a Soul Midwife. I was born in Worcester, Ma. USA, but now live in the UK. I worked for American Express for 34 years, but left in May 2014, to find my purpose in life. I'm on a journey of self discovery, but have recently been grappling with my youngest daughter's diagnosis of ovarian cancer and the many curve balls that life continues to throw at me.

My Friend is Dying

poppies

“He is nearing the end,”  the message said…

The words felt unfamiliar and somewhat foreign… but they shouldn’t have.  I have heard those exact words (or a variation thereof) a hundred times before. Maybe a thousand.  Perhaps a million.

Family, friends, strangers…  Death has always had a way of beckoning me to come close and bear witness to its achievements.

I cried as I read the words again and again and then watched them roll off the screen, onto the floor.

He is my friend.

We used to be “close” friends…   we lived in the same neighbourhood, worked at the same place and we carpooled (my God, is that really 40+ years ago?)  We were young and naive; different in so many ways, but quite similar in others.  We’d bitch and moan about work, our co-workers, life and politics…  and then we’d laugh and enjoy each others company on the drive back home.

Time, life and distance saw us slowly lose touch with each other.  He left Amex;  I stayed on.  He moved out of the old neighbourhood, I remarried and I too eventually moved, to a different town.  …but he was my friend, and we always had that.

When we connected on Facebook, several years ago, it was like no time had passed between us at all.  We were a bit older, our children were grown, our lives had taken much different paths; however, there were parallels.  He was a Grandfather, I was a Grandmother, we had both retired, we were both now in our 60’s…  and we were still “friends.”  And although we were separated by a lifetime of experiences and entire ocean, that friendship was intact.

He’s a bit younger than me…  which makes all of this even more surreal.  I sit here and contemplate my own mortality.  I wonder;  why him?  Why not me?  It could be me. It might have been me.  Should it be me?  And if not… why not?

Back then, we both had the same unhealthy lifestyle; smoking, bad eating habits, perhaps a little too much drinking.  However, we were young and immortal.  Time was on our side and we had an eternity of life to live and hardly a care in the world.

I can hear Bob Marley singing in the distance…  “Don’t worry about a thing, Cause every little thing gonna be all right.” 

Ahhhh, if only it were true Bob, if only it were true.

Life (and death) have a way of sneaking up on you and smacking you in the face, the minute you let your defences down!

“Smack,” your Mother’s dead.”

“Smack, smack, your brother’s dead.”

“Smack, smack, smack…”  Grandparents, uncles, aunts, cousins, friends, co-workers… your Father. Strangers.  Another brother.

And now, soon, an old friend.  “Smack.”

Hmmmm?  I just realised it’s the loss of another person who “knew me when.”  Another person who might tell you that I was once young and perhaps beautiful; healthy and full of life.  He could tell you I was clever and relevant; that I made a difference.  He could vouch for the fact that I was funny and that if I had tried harder, perhaps I could have been so much more.

Ahhhh, I understand my sadness now.  Sure, I will miss him, because he is my friend.  He is, after all, a part of who I am today.   … but I see also, that with him, goes a little piece of me.

As I sit here with my memories of him (and that time in my life);  he will take his memories of me with him, and they will be gone forever.  So really, a little piece of me will die with him.

And so it goes… with each loss we encounter, a little piece of us dies as well; until we are just a figment of someone’s imagination.

My friend and I are dying.

 

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No More Mr Nice Guy!

“I am sick.”

batman

“You know I’m sick.” 

“You’ve heard what the doctors and Google have to say.”  

“Remember?  Do you remember that I have a disease… an autoimmune disease?”

“No, it’s not cancer.  It’s not a heart attack.  I’m not dying… but I am sick!”  

“I can’t help but feel utterly exhausted, overwhelmed, out of sorts, dizzy, achy, off, cranky, and just plain not right.”

“Corticosteroids…  remember, we talked about what they do and how they affect people?”

“I don’t feel like ME!  Do you understand that?”  

“Going out…  going out anywhere, to do most anything… is stressful at best and I find it  quite mind-boggling! It freaks me out and causes me anxiety.” 

“So please…  can you please explain to me…  why…. if you love me, if you’re my friend… why you insist on dragging me around and parading me through endless hours of non-stop activity?” 

“Seriously!  WTF?” 

This is the pseudo conversation that goes on in my head, when a fellow PMR/GCA sufferer mentions that s/he was coerced or bullied into an outing or family gathering that they either did not want to go to, or were trapped into staying at, much longer than they ever intended to stay!

This must stop.  We must become better advocates, for ourselves!

We must be more comfortable standing up for ourselves and in telling our loved ones and friends what we want and need, when we want and need it!

We must stop internally (and externally!) apologising for being sick!

We didn’t ask for this!  We didn’t choose to have our lives turned up side down by this bullshit!  It was thrust upon us… like cancer, like Alzheimer’s, like schizophrenia… or any of the countless other debilitating diseases that strike people down in the prime of their lives!

I’ve never heard a cancer patient apologise for being tired or for having cancer!  And I’ve spent a lot of time around cancer patients!

Are we secretly embarrassed or ashamed by the fact that we’re sick?

Are we pushing ourselves in a futile attempt to “appear” normal?

Why are we allowing ourselves to be victims to the wants and needs of our friends and family at the expense of our own wellbeing?

Well, I say, “No more Mr Nice Guy!”

It’s time for us to be vigilant and listen more carefully to our negative (and often un-constructive) “self talk.”  And… it’s time that we changed that dialog!

No more thinking to ourselves; “Oh, I guess I should make an effort for Johnny… he’s so good to me.”  “I don’t really feel well, but I didn’t go last time, so…”  “I guess I could stay just a little longer…”  

Having a weird, obscure, freaky disease should not make us feel “less than,” or  inadequate.

We do not have to “make up” for any wrongly perceived imperfection or deficiency.

We are just as “good,” as all those healthy people!

Who are we trying to impress, anyway…  them, or ourselves?

Are we subconsciously trying to get our “old” selves back?  Do we think that by pretending to be normal, or stronger than we are, or more capable, that we can somehow resurrect that healthy, vivacious, fun, person that we used to be?

Well, we can’t!

Please know that s/he is gone!  That person no longer exists!  Hopefully we’ll meet them again one day (or at least an older, wiser, version of them), but for now, they’re gone.

Mort.

Why do we allow ourselves to be swayed by the wants and needs of others, when we know it is not in our best interest and it negatively impacts our health and wellbeing?

I’m not freakin Sigmund Freud, I have no answers…  but the questions still stands.

 

“Whatever games are played with us, we must play no games with ourselves.”

~Ralph Waldo Emerson

 

 

July 11, 1991

eclipse

It was a Thursday.  Apparently, there was a total eclipse of the sun on that particular day, but I hadn’t noticed; I was too busy dealing with death.

I had stayed at the hospital, sleeping in a chair, next to my Mother’s bed, for the three nights prior.  She had been in a coma for the past ten days; and on each one of those godforsaken days, a nurse would come into the room, take her vitals and tell me that she was getting weaker, her organs were failing and that  “…it wouldn’t be long now.” 

…but it was “long,”  it was ten fucking days long.

I had told her she could go.  I had promised her that we’d all be “okay,” and that she didn’t have to worry about us.  I had also promised her that I’d be with her, when the time came and that she wouldn’t have to do “it” alone.  I’d go with her as far as I was “allowed” to go and I’d hold her hand the whole way.  I knew she could hear me, but she wasn’t having it.

My brothers felt the same, but they couldn’t say the words.  They just looked at her and stroked her hand…  I knew they couldn’t take much more of this; it was wearing them down; really taking its toll.  They were sleeping less, talking less, but smoking and drinking more.

My Dad, God bless him, would stroke her head and whisper in her ear that she was going to be “fine.”   He would urge her to “fight.”  He told her how much he loved her and how sorry he was (for what, I have no idea)  He’d look at her with tears welling up in his eyes and he’d beg her to not to leave.

It was heartbreaking.

I had begun to think, after 10 days, of being told that she was “actively dying,” that maybe they were wrong.  I mean, she had said (and only half jokingly) on more than one occasion,  “…I’m not going.  I’m just not going.”  

Maybe she knew something that we didn’t.

On this particular day, I woke up stiff and aching, from sleeping in the chair, again…  and the first thing I did was to look at her chest.  Was she breathing?  It was hard to tell, but yes… she was breathing.

It was now time to go home, clean up, pick up my Dad and come back for another day and night of watching my Mom die.

I talked to her like, like I’m talking to you… “Mom… I’m going home to clean up, have some breakfast and pick up Daddy.  I’ll be back in about an hour or so, okay? I’m coming right back…  okay?”   

She didn’t  respond.

By the time I got home, my Dad had finished breakfast and was waiting for me.  I did my thing; made some toast and a cup of coffee. Took a quick shower, put on come clean jeans and a tee-shirt and within an hour and a half of when I had left the hospital, we  were in the car, on our way back.

We got off the elevator and headed to the Haematology/Oncology Ward, on 6 West like we had done a thousand times before…  As we walked past the Nurses Station, one of the Nurses was on the phone and when she saw us, she just put the phone down and stepped into the corridor, where we were walking.  I didn’t understand at the time, but she was actually blocking our way.

She looked at my Dad and then at me; and said something like,  “I was just trying to call you… I’m so sorry…  but your Mom passed away.”   

I was gobsmacked.

“Wait?  What?” 

“What do you mean she’s dead?”  

“I told her I’d be right back.  I’ve been here, non stop for three fucking days!” 

As the nurse walked us down the corridor, towards my Mom’s room, I became more and more angry.  “How could she leave?” Hadn’t I told her that I’d be back within an hour? Didn’t I tell her time and time again that I’d be with her at the end… that I’d help her get to the other side?

How could she…

Why would she…

As I entered the room and saw her lying there, just as I had left her, the first thing I instinctively did was to look at her chest.  Was she breathing?   “No,”  she was definitely not breathing.

My father wasn’t big on me swearing and I had never said the “F” word in front of him… however on this occasion, and in a raised voice no less, I shouted at my poor, dead mother,  “You couldn’t fucking wait until I got back? You couldn’t wait? I told you I’d be right back!”  

I felt my father’s hand on my shoulder, he didn’t say a word…  time stood still for a thousand years, or was it a second, I’m not sure; and then we both exhaled, broke down and cried.

The rest is a blur…  my brothers had to be told, arrangements to be made; the obituaries had to be written and Mercy Lunch menu decided on.  It all became a long list of tasks that were carried out mechanically over the next week or so.

I have missed her every single day since that day; I will say however, that I am so happy she decided she was “good to go” and I’ve realised that she had actually waited until I had left the room and chose her exact time.  She didn’t want me there. She didn’t want me to have to see her die.

That was my Mom, always thinking of what was best for her kids.

That was 27 years ago today…  seems like yesterday.

Footnote:  Oddly, and I guess as fate would have it, my time on the 6 West Haematology/Oncology Ward at the UMass Memorial Medical Centre in Worcester MA. was not to end there…  Years later, I would sit with both of my brothers, as they died (from cancer) in that same hospital, on the same Ward, in rooms just down the hall from my Mom’s room and from each other’s.  I was there throughout their end of life journeys and held each of their hands, till the end;  I promised them I’d be “fine,” and that it was “okay,” for them to leave me… 

Please don’t tell them, I lied.  

 

On Being “Freak”

Freak fairy

“She-That-Shant-Be-Named”

Recently a “newbie,” on the HealthUnlocked forum, posted her appreciation for some help and advice she had received from expert members of the forum.  In her note of thanks, she added, “…I don’t feel so much of a freak anymore.”  

My initial thought was, “Hmmm? How odd.” 

You see I’ve spent much of my adult life longing to be a “freak.”  Fighting to be different.  Doing everything in my power to distinguish and differentiate myself from the masses.  I like standing out from the crowd.  Being the “odd man out.”   

However… It wasn’t always like this.  When I was a kid, I would have killed to “fit in.”

In the 8th Grade, when I was 12-13, (Oh God, what a horrible time that was!)  I was unusually tall, “big-boned,” and a wicked “Tom Boy.”  I stuck out like a sore thumb.  I had the beginning’s of acne, my “boobs,” were growing I had just gotten my period, which I was sure the whole freakin world was aware of!

And when I say I was tall…  I don’t just mean tall for my age…  I was taller than every student in my class, including all the boys; and I was taller than all of the female teachers and some of the male teachers as well!  I was ginormous!

And what a miserable fucking existence it was.

My secret wish was to just disappear.  I used to wish that the sidewalk would open up  and just swallow me whole, as I walked to school each day.  I imagined local paper, The Worcester Telegram & Gazette, would run a headline that would say; “Freakishly Tall Bell Hill Girl Disappears Without a Trace.”  

In those days, I spent a lot of time in the very top branches, of the “apple tree,” which was in a wooded area, near our house.  I’d climb the tree and sit up there for hours, looking out over the city.  I’d lose myself in the view…  you could see all the way to the Worcester Airport, which was at least a thousand miles away!  And from up there, everything seemed better.  Slower. Quieter. Easier.

There were no big brothers torturing me. No kids making fun of me. My Mom wasn’t constantly reminding me to “act like a lady.”  (What does that even mean?) There was nobody looking at my boobs or my feet!  (More on that later!)

You see, until I was like 10-11 I believed I was boy!

I grew up with two older brothers who I idolised!  Along with my being “Daddy’s Little Girl,” my brothers were my “role models” and I adored them.  I played Cowboys & Indians (sorry I know that is no longer socially acceptable, but Cowboys and Native Americans just doesn’t sound right!). I played with plastic Army men (there were no plastic Army women) and Charlie and I frequently wielded machine guns (also not socially acceptable!) and played “Gangsters,”  as he was a big Eliot Ness and “Untouchables” fan.

For many years it was me and my brothers; and as far as I knew, we were the same.  Imagine my surprise when I started growing boobs and got my period.  I won’t even mention the trauma I experienced when I came to realise (…and I have no idea how that actually came about!) they had “penises'” and I obviously did not!!!!

Seriously, could life get any worse?

Shoes, right…  I remember going to buy school shoes with my Mom; she asked if I could try on a particular pair of shoes in a Size 10 (UK 8).  As the Salesperson (a 30-40 year old man) walked into the back room, he mumbled,  “I might as well just bring out the box.”   Well, my Mom heard him and went ballistic!  Not only did we not try on the shoes he brought out, we left the store in a huff and I don’t ever remember ever going back into that store again!  I was proud of my Mom, but boy did that experience leave a scar…   that’s probably the reason I tried desperately to squeeze my feet into shoes that were too small for me, for many years to come.

….but I digress.

So “When did things change?”  I hear you say.  Well, once my “boobs” were well established and could no longer be concealed, and my brothers (who were now in their mid teens were treating me like a leper, I had no choice but to be the female/girl/woman I was meant to be.

As I started High School, it became painfully obvious that I didn’t fit in with any of the  firmly, established cliques.  I wasn’t an academic or a jock.  I was way to tall to be a Cheer Leader and had no artistic ability… and I was (I thought) way too cool to be a “nerd.” 

So, I created my own persona; I became this weird, tall, loner chic, who at 14 volunteered afterschool in Communist Bookstore, marched in anti-war rallies, smoked pot, worked with a local Black Panther’s group to set up a Breakfast Program and hung out with 18, 19, 20-year-old “Hippies.”  (WAIT? What’s that noise?  Oh that’s just my Mom rolling over in her grave!) 

Yup, “If you can’t join em, beat em!”  

Becoming a freak became (sometimes consciously, sometimes unconsciously) my main goal in life…   much to the dismay of my parents (and my brothers!) “Who is this freak?” I could hear them thinking.

How I lived though my teenage years is a huge mystery! I took every risk and chance I could take.  I tried everything at least once and somehow lived to talk about it.  All I know is that I must have had one helluva “Guardian Angel” and how I never got caught, is an unanswered question!

This need to be different (to do my “own thing,” “be my own person,” “be comfortable in my skin,”) stayed with me throughout my 20’s, 30’s, 40’s and is still very much intact, even today.

Why?  I don’t know exactly…  Maybe because I could never really fit in anywhere, so I felt the only way I could survive (and not be swallowed up by the sidewalk) was to purposefully, swing the pendulum as far in the opposite direction as I could.

The point is…

Ahhhhh, crap…  I may have lost my point, but I think it’s that being different is a GOOD THING!  Not being like everyone else is “okay!”  Standing above fray empowers you.

Having a weird, unheard of illness (or two) like PMR and/or GCA is totally cool and quirky!   I mean, seriously, if you’ve got to be sick, you might as well have something that no one has ever heard of right?  Why be like everybody else?  Be different!

Think about it… your body is so amazing and fine tuned; so hypersensitive and “on guard,” that it (unfortunately) attacks healthy cells in your body (by mistake) trying to protect YOU!

How freaky is that?

And all the medical geniuses in the world haven’t been able to explain what causes this!

We are a freak of nature!  We are the anomaly!

I want to tell the “Newbie,” to embrace her freakishness.  Own it.  Flaunt it.  Don’t shy away from it.  You are a freak and you’re fabulous because of it, not in spite of it!

Be vocal and tell the world you have this weird, unpredictable, hellish, unheard of illness!  Educate them.  Make them understand.  Let them know we’re out here and “we’re mad as hell.”  Let them know we will not sit quietly in the corner waiting for the scientists, researchers and big pharma to catch up…

We are FREAKS and we will be heard NOW!

Well,  …just as soon as this tiredness and fatigue settles down a bit.

Oh, and my tapering schedule isn’t kicking my ass, and I can get my family and friends to listen to me for more than 2 minutes without their eyes glazing over and oozing boredom.

*yawn*  Okay,   …enough ranting for now.

Almost cut my hair
It happened just the other day
It’s gettin kinda long
I coulda said it wasn’t in my way
But I didn’t and I wonder why
I feel like letting my freak flag fly
Cause I feel like I owe it to someone 

~David Crosby~

Stronger Than I Realised

me and PMR GCA

It’s been 7.59451 months since I experienced the godawful  headache and fatigue.  It was another 11 days before I would surrender to the pain and go to the GP;  she in turn would send me to A&E, that same day.  After 8 hours in A&E, I would be sent home; told I had migraine.  After another 7 days, I’d be back at the GP and sent (for the second time) to A&E. It is now I’d be told I had “… Giant Cell Arteritis, also known as GCA.”    

I remember the first thought that went through my head, it was… “What the fuck is GCA?”

That seems like a lifetime ago…

A lot has happened since then.

First, there was a ridiculous amount of time wasted, with me lying on the couch, staring at the walls and feeling sorry for myself.  I was so paralysed with exhaustion and fatigue, it is absolutely unimaginable, unless you’ve experienced it yourself.  To this day I don’t know if I’ve exaggerated how insanely tired and “out of it” I was, or if it was really was as bad as I remember it.  In any case, I was sure I was going to die and I prepared myself accordingly;  sleep, make amends, sleep, make more amends…

hanging out on the couch

{Obviously, me!}

It was shortly after this (since I didn’t die!) that I discovered fragments of me, to whom, I had never been introduced.  I was formally given introduction to, “She-Who-Shant-Be-Named,” over a short and very frenetic period of time.  She is a daunting creature, who apparently had lived in the bowels of my mind for the entire 63 years of my life; but was only coaxed into revealing herself, when I began ingesting 60-80 mg of prednisolone daily!   She came “head on,” like a fright train, outta nowhere!   She scared the  shit out me…  because…  well because, she was me!!!!  …but yet, she wasn’t.  It was/is very confusing!

sheShe was more brash than me (if you can imagine that!), louder and much more annoying than I ever could be!  She darted around the house and my mind, at the speed of light.  She woke me up at 2:00 am, and would not let me rest until sometimes 5 or 6!   She pissed me off that’s for sure…  annoyed me, taunted me, and laughed in my face!

Ohhhhh, but how she inspired me!  She opened my mind to thoughts and dreams I had never dared to entertain! She gave me permission and empowered me to rant and rave and curse the “Power’s That Be,” openly, honestly, and without regret or apology.

We had/have a love hate relationship, she and I; and although I know she’s still within me, I don’t get to hang with her quite as often as I used to.  Instead of me becoming more wild, free and unbridled; I have unwittingly caused her to become more restrained and well behaved.  How very sad, huh? 

“She-Who-Shant-Be-Named,”  convinced me to enter an Art Competition; helping me Gincreate an ethereal sculpture made using a Brighton Gin Bottle!  The head was formed of papier-mache, she is painted a translucent pearl, has beautiful white wings and her hair (similar to mine) is fashioned out of bright pink disposable mascara brush tops!  Her name is “Divine Gintervention,” and she’s beautiful!  She didn’t win anything, but she gave them a run for their money…  or at least I like to think she did.  She sat proudly amongst the fine, formal, artesian works of art… and she held her own!  She now sits in a prominent spot, in the flat, where I pass by her everyday!

Writing this “Blog,” became something that I was compelled to do (again by “She-Who-Shant-Be-Named,”)  shortly after my GCA/PMR diagnoses.  It became a bit of an obsession, really.   Words would just pop up on the screen and I had no idea where they had come from!  I’d sit down with the intention to write about one thing; and the next thing I knew the subject had changed and I was off on a tangent writing about something totally different!  My writing seemed to be entertaining people and making them smile, which was reward enough for me!  I loved writing and people seemed to enjoy reading…  a win/win as they say in the business.  (Not sure what business exactly, but I’ve heard it said!)

Ahhhhh, and then there’s the Prednisolone!  The Devil’s Tic Tacs, as they are known!  I went from 40 mg to 60 mg within two days of being diagnosed.  And then (after seeing the Rheumy) I began an aggressive “taper down” plan.  (Ooooo just those words, “taper down,” they give me the heebie jeebies!)  All went well from 60 mg down to 45 mg, but then ALL HELL BROKE LOOSE!  And again, I thought I would die!

devil

With a failed taper down (under my belt) I went quickly from 45 back to 60… but to no avail!  I had to go up to 80 mg to get the same relief I had been getting at 60!  WTF? And we started the whole freaking process again, albeit much….  more….  slowly….

I (somehow) got through Christmas and the New Year, although I don’t remember much of it at all, i.e. shopping, opening gifts, seeing people, decorating a tree.  Hmmmm? Did we even have a tree????

I do know that it wasn’t until sometime in January/February that I realised (really truly realised) that I was ill.  This was not a cold or some weird virus.  “This” was not going away anytime soon.  This (whatever this was!) was going to kick my ass and irreparably change my life, forever.

Coming to grips with the fact that you’re “seriously ill,” is difficult at best.  The first thing you realise is that you have “no control.”   That is a hard pill to swallow.  There’s nothing you can do, nobody you can call, no “Complaints Department” to write to.  You simply  have to accept you have NO CONTROL over your current situation.

Next, you come to understand (and believe me, this is a very bad day!) that your very “existence,” has been changed.  Your life is no longer what it was.

You can no longer keep up.  You find yourself on the peripheral.  You’re confused and you feel lost.  People (you love) are out of reach.  You want to communicate, but your mind is like a giant marshmallow!  They look at you, like you’re crazy… and you wonder if you are!  You’re so tired, that you can’t comprehend what’s happening around you.  It’s surreal and disheartening.

crying

There then comes a point in time, when you start to differentiate (just ever so slightly!) illness symptoms, from Pred side effects, from Pred withdrawal symptoms.  There are only subtle differences, and it’s almost impossible to identify one from the other, but they all are real and equally as nasty.  It doesn’t really matter because you feel like shit, regardless of the cause.

As the weeks/months pass you unknowingly experience what feels similar to (if not exactly the same as) Elisabeth Kübler-Ross,’ “5 Stages of Grief & Loss. 

Those stages are defined as: denial, isolation, anger, bargaining, depression, and acceptance.  And they all (except for “acceptance,” I guess…  I don’t really know about acceptance, I havent gotten there yet!) SUCK!  

You bargain with “God,” if you believe in one and you maybe even try to make a deal or two with the devil, on those really bad days.  You promise to be better and do things differently, if you can just have your old fucking life back.  You’ll eat better, stop drinking, get more exercise, get your stress levels in check, etc, etc, etc,  It’s all to no avail.

Minutes fade into hours, hours into days, days into weeks and weeks in to 7.59451 months. And here you are.  You’re still fighting; even though you vowed to give up this losing battle long ago.  You carry on, wearily.

You look back and (although you don’t remember a lot of it!) you know it was HELL.

You know it should have broken you and you’re surprised it hasn’t.  fight

There were those who told you it would get better; it would get easier.  You didn’t really believe them.

You didn’t think you had what it would take…  but you did.

You do.

You will.

The months will (most likely) fade into years and you will continue to fight.  You will continue to have what it takes.  You will get through this

Why?

Because you’re stronger than you realise…   and so am I!

me3

 

 

 

 

PMR, GCA, Steroids, Rheumy’s, GPs and more… please more!

open heart more friends

Apologies, this post will only really make sense if you are a member of the “HealthUnlocked” PMR/GCA on-line health forum. 

 

I have both PMR and GCA and was diagnosed in November 2017.  I remember stumbling across the HealthUnblocked website and thinking, “Wow, what a fabulous site!” 

I knew I had found my new tribe. 

Finding people who could relate to my particular illnesses was the most amazing feeling, ever!  People out there, knew exactly what I was taking about…  I made a comment and they “knew,” they just “knew” what I was feeling, thinking and going through.

I learned very quickly who (as in which member’s post/comment) to focus on for the serious, educated, more informative response… and which member’s to seek out, for the more emotional, empathetic, “touchy/feely” responses, I might be craving.  All were/are welcome and very much appreciated…  it was just sometimes I needed to be educated and sometimes I needed a hug.

The thing I really liked about the site when I first found it (now remember this is 7 months ago) was the diversity.  Everyone seemed to have a voice and everyone was allowed to be heard.

Sure, there was the odd post that didn’t specifically speak to PMR, GCA or anything related to either; but that was okay.  Nobody seemed bothered or upset by that and I believe those posts gave us all a much-needed, albeit momentary, diversion from our personal hell, which is PMR/GCA.

A few minutes of blah, blah, blah about our gardens, cars, gun hobbies, children, holidays, grandchildren….  WHATEVER!  It was a few minutes of innocuous bantering that allowed us to forget that we weren’t just the unfortunate victims of some stupid disease!  We weren’t just patients, on meds, seeing GPs and rheumatologists.  We got to be real people, with real lives, interests and opinions; we did have other, valid and interesting things to talk about!

The conversations never really went “off the rails” did they?   

On-line forums are changing; they are growing and morphing at such a fast pace, that I believe the communities that support them, are finding it hard to keep up.

There are more and more people leveraging on-line digital mediums i.e. forums, as their primary source of news, communication, education, social interaction, companionship, etc.  And our new members are getting younger!  You only have to read the posts on HealthUnlocked PMRGCAuk to see that people who are being diagnosed with PMR and/or GCA are not just in their 70/80s anymore…  they are in their 40/50s!

As Bob Dylan said… “The Times They are a Changin.” 

It is only my opinion (and you can disagree with my opinion, but you can’t say I’m wrong, because it’s only an opinion!) that we as a community (a tribe, if you will) should try to keep up with the times.  If we are to continue to be relevant and meet people’s needs, we have to open our hearts and minds to what it is people want and need, out of the site.

I don’t think anyone is trying to purposefully transform the HealthUnblocked PMRGCAuk site into another bullshit website where chaos and insanity preside!  However, why can’t the site’s primary “focus” be PMR/GCA (and all things related); but still allow us the freedom to post the odd comment about immigrants, gardens, grandchildren, gun hobbies, cars, idle chatter, or whatever?  … if only just occasionally?

Those who want to respond and engage, can, while those who have no interest in (or disagree with) the post, can choose to disregard and not engage.  Not every post requires a response, especially if you disagree with it.  We all have a choice.

Isn’t it just that simple?

I believe we risk tumbling down that “slippery slope,” if we (the members of the community) try to impose our own personal beliefs of what should and should not be allowed, to be discussed, on the site.

If my PMR/GCA is effecting my sex life, am I allowed to write about it?

Some might say yes, some might say no.

If my religion prevents me from taking corticosteroids, to treat my PMR/GCA, can I post about that?

Some might say yes, some might say no.

If my husband leaves me, as a direct result of his inability to deal with my illnesses, can I vent about that loss and my grief?

Some might say yes, some might say no.

As one member has already pointed out, “politics” is inextricably intertwined with health care (especially in the US), and commented;  “… one would think it warrants discussion among us.” 

Shouldn’t we just allow the site Administrator(s) to do their job?  Perhaps we should let them decide what is and what is not “allowed,” to be posted?

I treasure this site.  I appreciate and applaud its relevance and importance.  I support it’s growth and success.  I just hope and pray the site does not lose it’s diversity, open-mindedness and openheartedness.

From No Bags Allowed to Bloodied and Bruised

9c4f9ab1630b3c1e1faafa5b80d4753b--black-leather-tote-bag-leather-totes

The evening air was filled with promises of magic, music and memories; unfortunately it ended with blood, bruises and a battered ego.

The row Hubby and I had, as we were walking to the venue, didn’t help things.  We were admittedly both “hangry” and the Disneyesque queuing system (back and forth, back and forth, back and forth) didn’t help my temperament or my “pre-Billy Joel-fall,” already bad knee.

After having walked 20+ minutes and getting through the ridiculous queue, it was time for the security, “pat-down,” part of the evening, which is always fun, right?

The gruff young man, who obviously did not want to be working on a Saturday night, patting down the hot sweaty body’s of senior citizens, took one look at me and said, “Your bag is too big…  you can’t bring it in.”

“What?”  was my immediate response.  He proceeded to explain that my handbag was too big to bring into the venue.

Too big, compared to what?

How can a normal sized, woman’s tote bag, with no pockets, zippers or secret compartments, not be allowed in a venue that plays host to rough and tumble footballers, who usually carry giant rucksacks?

After a not very nice exchange (where I will admit the “F” bomb may have been uttered, once or twice) I angrily dumped the entire contents of my bag on the sidewalk; I needed to prove to this man, that I was not a terrorist and the most dangerous thing I had in there was my Chanel “Pirate Red, Lipstick!

However, he was unphased by my very passionate display.  The “contents” of my bag, were not the problem, it was in fact, the “size” of my bag.

Apparently the bag needed to be no bigger than the size of A4 paper; (8.29 x 11.69).  And mine was closer to A3; (11.69 x 16.53).  This restriction was, I was told, “clearly” explained to me on the website, where I bought the tickets, over a year ago!

Sure, there may have been some teeny, tiny print, in a section titled “Terms and Conditions You Don’t Give a Shit About, but Should,” however, I honestly do not recall.

After much debate about how I was supposedly notified about this arbitrary handbag size restriction… we were told that we could walk back out to the front of the venue and leave the bag at the “Bag Drop Off Point,” and could pick it up after the concert.

Yeah… like that was going to happen!

My Sicilian, Irish, Italian, American, Steroid induced, semi-A-hole temper kicked in and I told the young man he could keep the fake, leather, Marc Jacobs, £9.99, knock off tote and I proceeded to stuff the contents of my bag, into my (and my poor husband’s) pockets!

HA, I sure showed him, huh?  🙄

Once inside, bagless and with budging pockets,  I was not a happy camper.   No, I did not want food. No, I did not want a drink. No, I did not want to talk about “it” or anything else for that matter.  Just leave me alone and let me sulk.

After all, I do that soooo very well.

As the time passed, the sun began to set and the atmosphere became much less frenetic; I began to simmer down.  Hmmmm? Perhaps a nice glass of wine and maybe a little nibble would be of some help.

Being the capable, independent, albeit slightly handicapped and stubborn woman, that I am;  I slowly limped to the concession stand.  Yes, a red wine and a “gourmet” hotdog would do the trick.

As I was making my way out of bowels of the building and back onto the pitch, I heard the first few notes of a piano…  I then heard the crowd go crazy!

I stepped up my pace, not wanting to miss any of the action!

I saw the black and yellow cable cover thingy and I was well aware that I needed to step over it.  No problem.

Unfortunately the rubber sole of my Converse sneakers, caught on the rubber strip of the cable, cover housing unit and it was all over except for the slow motion falling and my feeble attempt to save the wine!

cable

I could see (also in slow motion) the horrified faces of the people sitting to my right; they knew I was going down…  I knew I was going down… but there was nothing any of us could do to prevent it!

I hit the ground, like a tone of bricks.  Oooff!

Oddly, and only because I willed it to be so, the plastic cup of red wine landed upright and only about 3/4 of the contents had been lost… most of that I could wring out of my new, yellow, Bee Manchester scarf, purchased earlier in the day!

Some men helped me up… someone handed me my wine.  I think I said “thank you,” and me and my slightly bruised ego found our way back to our seats.

It was only then  I realized my knee and elbow were actually bleeding, as I could feel the trickles of blood running down my arm and leg, as I tried desperately to be cool.  I was however embarrassed and in shock.

What the hell had just happened?

I reluctantly told my husband and he was horrified!  Was I okay?  Did we need to go to the medic?  What could he do?  He just wanted to make it better and I just wanted to forget it happened…  I’d worry about it later!

Right then, I had more important things to do.  The concert had stared; Billy was obviously singing directly to me and all was right with the world… at least for now.

My battered and bruised body thoroughly enjoyed two and a half hours of great music, bittersweet memories, singing, swaying, and dancing.

Thanks Billy!  Another great concert to add to my list of “Great Lifetime Concerts,” cuts and bruises notwithstanding.

…but at least for this one, I’ll have the scars to remember it by!   ; )

Is it just me…

heart and monster

{Please note this rant is specifically intended for members of the HealthUnlocked PMR/GCAuk website/forum.  It most likely will not make any sense to those who did not see the original exchange that it references.} 

 …or has the atmosphere on the HealthUnlocked PMRGCAuk site changed (just the tiniest bit) in the last 4-5 days?

I can’t help but wonder, if a particular Post, raised by a new member might have subconsciously influenced us, in a way, that has caused us to lose a bit of our momentum and esprit de corps! 

I’m sure you remember it…  the post was rather lengthy and (even I must admit!) somewhat perplexing.  It was about…  well it was about…  Hmmm, I’m not exactly sure what it was about?

It contained an inordinate amount of seemingly unrelated information, that had to do with (among many other things) 12 different auto immune diseases, Complex Regional Pain Syndrome, Orbital Myositis, Prednisone, Polymyalgia Rheumatica, itchy blisters, Leflunomide, IVIG Gammaglobulin, GCA, CellCept, Oriental Medicine, being a Herbalist, acupuncture, hot stone massage, yoga, meditation, “on good days belly dancing,”  and much, much, more!

I read and re-read the Post several times and when the Comments started coming in, it became crystal clear that I was not the only one struggling to comprehend and grasp what the writer was either A.) trying to convey or B.) trying to ascertain.

It was a train wreck!

…however, human as I am; I could not look away!  I was mesmerised by the ever intensifying, repartee between the writer and reader/responders.

As the comments and responses whizzed in faster than Usain Bolt’s 100m record, I consciously decided to “sit this one out.”  Not because I didn’t have a gazillion questions, I did!  And not because I didn’t find the entire exchange absolutely riveting, I did!  And, no it wasn’t because I thought I was “above” it all, I’m not and I wasn’t!  

No, I believe it was because one of my first impressions, after reading the initial Post (admittedly several times) was that this new member may have had (shall we say) a few issues… 

Now, I’m no doctor; nor do I have a degree in Psychology… but I am “non compos mentis” enough myself to recognise that when someone struggles (to that extent!) to make his/her point, convey their thought process, and to be able to respond in a civil, logical, rational manner, there may be some extenuating circumstances at play.

I found it interesting, that when I looked up the formal definition of the word “extenuating,” it is defined as “making forgivable.”  I was both surprised and delighted by that definition!  Making forgivable, how lovely.  

And I feel (reluctantly) compelled to say, a big part of me, felt sorry for her.  Now, I know that is NOT going to be a POPULAR opinion, but please hear me out.

It was obvious that she irritated most everyone, beyond words, including me!  Tempers and emotions “flared,” (no pun intended) and things got out of hand…  but, if you look back at the exchange now, 5 days later, it kind of (in my opinion) took on a “Lord of the Flies” vibe.

It ended up being one against many, which is never pretty.  And although everything seemed to be going okay in the beginning and people really were trying hard to understand her; when she failed (again and again) to make her point and she became frustrated and a bit hostile (and more confusing) it all went terribly wrong.

One premise William Golding explored in “The Lord of the Flies,” is that humans are essentially good at heart, unless they are tempted by evil.

I believe we were all tempted by evil that night…  not an innate, viledepravedsinister, evil, but a more non-toxic, run-of-the-mill, everyday evil that creeps into a lot of our hearts and souls at some point in our lives; perhaps it’s caused by drugs, depression, loneliness, hormone imbalances, mental health issues, Prednisone, etc.   …but I would wager to guess that maybe 90%+ of us have gone though some kind of “hell” in our lives, that caused us to be irrational, inconsistent, confusing, unintelligible, belligerent, accusatory, defensive and perhaps even worse!

All you’d have to do is ask my husband; he could give you 100 examples, off the top of his head, when I went from “seemingly sane,” to a special kind of “evil,” in a matter of minutes! 

In any case… back to my original question;  Is it just me, or has the atmosphere on the HealthUnlocked site changed (just the tiniest bit) in the last 4-5 days? 

Now that I ask the question again in earnest…  I think it’s just me.

I think I’m just bit sad that the whole exchange ever took place.  I’m sad the writer wasn’t able to get her point/question across.  I’m sad that the reader/responders were upset and unsettled by the exchange.  I’m sad that I sensed anger and hostility in a social circle that I have come to know as helpful and tolerant.  I’m sad that we, as a strong, intellectual, educated, coherent, on-line community weren’t able to just “shrug it off”  and move on.

However, with that said…  I’m the LAST person in the world, to suggest to anyone, that they deny or swallow, their true feelings about anything!  If you have a “rant,” simmering inside of you, you need to (no, you must!) set it free!  What did my Mom say, ” Better out than in!”  I would not deny ANYONE their opportunity to RANT and set themself free of that internal angst.

In retrospect, this is probably just me over analysing and reading into a whole lot of nothing! 

However, here’s the part where I feel I must say, PLEASE don’t get me wrong!  Please don’t  misunderstand me or this rant!  I am not judging anyone!  I am not pointing fingers. I am not placing blame. I am simply communicating MY feelings, observations, thoughts and opinions, of that particular post and the responses I saw that particular evening.

In closing, please be reminded that I LOVE being part of the HealthUnlocked PMRGCAuk  website/forum and I treasure all of its members, especially it’s long time, “expert” members.  I appreciate and rely on the quality (and quantity) of valuable, information that is available, at my fingertips.  And feel fortunate to have found the site so early in my PMR/GCA journey.

“I am by nature an optimist and by intellectual conviction a pessimist.”

~ William Golding

Chaos and Mayhem

 

As far back as I can remember, my Dad used to tell me that I was like a “Bull in a china shop.”  It seems that even as a very young child, I would leave a trail (literally a physical trail!) of disruption behind me, wherever I went!

I was (and still am) a bit of a klutz; so often times the pandemonium left in my wake, was something very unfortunate, like a broken vase; or in a more fortunate scenario, just a piece of bric-a-brac, that had been knocked over and left for dead.  In either case, you’d definitely know, if I had been in your shop or home.

The phrase,“Bull in a china shop,” interestingly enough, can also relate to a situation where a person finds him/herself out-of-place or uncomfortable and deals too “roughly” or “directly,” with a delicate problem.  Needless to say, throughout my life I have been known to be a bit of a “Bull,” in this regard as well.

It’s believed that the phrase came about because of real life occurrences that took place in 17th century London, when live cattle were brought into the actual marketplace!  Sometimes they would get loose and stray into the nearby shops, reeking havoc and causing damage and loss of life!  The earliest recorded use of the phrase is by a novelist named Frederick Marryat in a novel titled, “Jacob Faithful.” (1834).

Hmmmm?  I just realised, I’m a bull by nature and a bull by zodiac sign!

**************************************************

Since meeting my husband in the mid 1990’s, I’ve been introduced to (and have developed a fondness for) Superhero films; Unbreakable, Hellboy, Iron Man (all),  X-Men (all),  Guardians of the Galaxy (both), Batman (all), Fantastic Four, Justice League, Doctor Strange… just to name a few of my favourites;  but I do love most all of them.

It was when Halle Berry was first introduced as Storm, in X-Men (2000), that I decided I needed a Superhero name of my own.  My husband was quick to agree; and based on many factors, least of which my history as a Bull in China Shop, we decided on Chaos!

It is the most perfect name for me.

I have embraced and made every attempt to be worthy of my Superhero name, since adopting it in 2000.  My husband and I often look at each other and roll our eyes or snigger, when I turn too quickly and accidentally break, or knock something over.

It’s not as funny and gets a tad embarrassing, when I “open my mouth and insert my foot,” causing an otherwise lively, fun-filled room of people, to turn deathly quiet.  When the mood suddenly changes to the funeral scene from “Four Weddings and a Funeral,” it’s not very funny.

“Chaos” (as much now my alter ego, as it is my Superhero name) has been aroused and reared her brazen head at the most inopportune times.  For example, at my brother’s funeral, my daughter’s wedding, various dinner engagements with family and friends…  in stores, restaurants and even in the North Laine section of Brighton, when over zealous motorists have wrongly believed that they had the right-away!

She is both a blessing and a curse.

However, she and I happily co-exist; sharing the same body, mind, soul and consciousness, while being aware that we need to give each other respect and space to grow and “be” as individuals in our own right.

**************************************************

The Cambridge Dictionary defines “mayhem,” as;

“a situation in which there is little or no order or control,”

While Merriam-Webster defines it as:

“Needless or wilful damage or violence” 

Either way, it sounds an awful lot like chaos, don’t you think?

Well…  I could not help but noticing, that when Max (my beautiful, precious, innocent, 16 month old grandson) was visiting last week, he displayed endless periods, of behavior that strongly resembled mayhem!  

With this beautiful, angelic face and smiling eyes, he would “wilfully,” pick up a candle, look me right in the eye and take a big old bite out of it!  He would then, lock his jaw, like a Pit Bull, making it virtually impossible to get the piece of wax out of his mouth!

He’d quickly and without warning, go from holding and admiring the round, colourful, ceramic coasters… to wildly throwing them across the room, like small, lethal, baby sized Frisbees!

There was the small, round, metal, potato masher (that Grandma stupidly handed him!) that he turned into a single, drumstick and proceeded to imitate Phil Colin’s drum solo, on the track “In the Air Tonight – Phil Collins.  The coffee table is still recovering!

He was loving and gentle to all of Grandma’s plants until…  it no longer suited him.  The delicate leaf would, one minute, be held gently between his two fingers and then in a  “blink of an eye,” it was being strangled, in his tightly, clinched little fist!  Never to breath in carbon dioxide again…

It was both interesting and quite disturbing how he could go from calm and inquisitive to devious and destructive, in a microsecond.  It was almost like something possessed him and he no choice, but to act out and be “wilfully violent,” “destructive” and “out of control.”

Hmmm?  It makes me wonder…

Although he looks exactly like his Daddy, could he have inherited the “chaos” gene?

Could he be the next Bull in a China Shop, but with a more modern, destructive, mayhem element to it?

Perhaps he and Grandma should team up more often…  maybe we could capitalise on this?

Perhaps we could be a famous, Superhero Duo!   I can see it now…

Chaos and Mayhem; Wreaking havoc, wherever they go! 

Chaos and Mayem

Fool me once…

knee 8

An actual photograph of my knee, this morning.

I should have known, a couple of weeks ago, when the debaucherous  London Birthday Bash Weekend, didn’t “kill,” me…   Or last week, when I reduced my steroid intake by 5 mg didn’t feel overwhelmed by fatigued, exhaustion and withdrawal symptoms. Or, better yet, this past week, just because I’ve felt so “freakin good” for two whole weeks now…  Seriously, how could I have NOT seen this coming?

Yes, yes, I’m an idiot!

I should have known that “The Universe,” was plotting against me.  That it was off in a corner someplace, cooking up some wicked, diabolical scheme to get me.

Had I listened closely, I may have heard the Universe say, “I’ll just give her a bit of time to instil a strong,  false sense of security,”  “Make her feel all is well, so she’ll let her guard down just a smidge….”  “Ahhhhhhh, there we are!  She really is such a sucker…. LOOK!  She’s buying it, hook, line and sinker!” 

…but I wasn’t listening.

I was too busy partying, drinking wine, eating bread…  “Oh sure,” my knee hurt!  My knee always hurts.  However, I found that, if you drink enough red wine, it doesn’t hurt half as bad; but for some reason your head starts to hurt instead!  “Hmm, go figure.”

So… you may or may not know (you may or may not care) I have a “bad” knee.

I screwed it up a few years ago while on a walking holiday through the hills of Tuscany!  It was an AMAZING holiday, one that I throughly enjoyed, and will never forget…  but waking between 7-15 miles a day (when you’re not used it) up and down, rocky dirt roads, puts a real strain on your old lady knees!  “Who knew?”  

My good ol GP (dick that he was!) thought, at the time, that I had torn my meniscus, but since I was “a woman of a certain age,” and not a professional athlete, I was told the NHS would not consider treatment.  I should ice it, take ibuprofen, do knee exercises and be gone from his sight!

Over the past couple years it got better, than worse, than better and more recently way, way WORSE!  To the point where I find it difficult to walk and when I do walk, I limp and wince in pain with each step.  (Yes, I can hear you now…  “Ooooo, very attractive Melissa!”)

To exacerbate the situation I have also developed a “Bakers Cyst” behind that same knee.  This is quite common, because your body naturally tries to heal the damage by sending a lot of thick, yucky, fluid to the area to cushion and protect it.  Unfortunately this fluid forms into a sack and just sits there, right behind your knee making it difficult to bend/straighten your knee and not really cushioning or protecting  at all! Very helpful.

Anyway, I digress…  sorry.

Today, I went to see an Orthapedic guy…  privately, not on the NHS.  I wanted to know exactly what the issue is and understand what course of treatment and options this “knee expert,” would recommend for this “woman of certain age.”   

I fully expected him to say I had in fact torn my meniscus, and that for several hundred pounds (plus our private insurace coverage), 6-8 weeks of my time and maybe some physio, he could fix me up like new, with keyhole surgery!

Soooooo, after a short discussion I was sent off for an x-ray.   Once back in the Mr Chauhan’s office, I was staring at an x-ray on an oversized desktop monitor.  The image looked very similar to this:

bone on bone

I had no idea what I was looking at, until the good doctor pointed out the obvious space between the two bones on the on the left side of the image; and the not so obvious space between the two bones on the right side of the image.

“Hmmm, that’s curious, “ I thought!

As I slowly drew my attention away from the monitor, I heard words like “degenerative,”  “arthritis,” “torn meniscus,” and “bone on bone.” 

Wait. What?  Did he just say “Degenerative arthritis????”   WTF? 

It got much worse…  I actually stopped hearing the Doctor’s voice coming out of the Doctor’s mouth and instead, heard the Universe laughing and saying, Hahahahaha, gotcha!” 

When I did hear the good doctor’s voice again, it was very serious with no hint of a late April Fool’s joke in the play…  I heard, “You need a total knee replacement.” 

WTF? Are you fucking kidding me?

“But wait…. What about keyhole surgery?  What about options?  What about…  what about something other than this?” 

As he peeled me from the ceiling, he responded to my line of “speeding bullet” questions:

“No, mending the meniscus will not help.”  He would not perform that surgery, if I wanted him to.

“No,” he would not remove the Baker’s Cyst, that will not help.

“Yes,” I can continue to have it drained, but it most likely will not provide a lot of relief from the stabbing, “ice pick” like pain on the side of my knee.

“Yes,” degenerative means that it will get worse over time.

And the nail in the coffin statement went something like this,

“You will most likely have that knee replaced at some point in your life… you do not have to do it now, but the pain will get to the point where it is perhaps unbearable and your quality of life will be impacted more than it is now; and you will at some point have to make this decision.” 

He was informative, not reactionary, honest and very calming.  We talked a little about my having PMR & GCA, the increased risk of infection because I’m on high dose steroids, my taper down schedule, and the fact that he would work closely with my Rheumy,  if this is the road I chose to go down… We also talked a little about the pros/cons, risks/disadvantages of waiting a few years.

HOWEVER, he kept bringing me away from the minutiae (calling them mere logistics) and brought me back to ME!

What did I want?  Did I want to take invasive action.

He kept reiterating that I needed to think, long and hard about this;  do my research, get a second opinion, talk to my husband, and determine if I wanted to take invasive action.

If I do, then we start talking about when, where, how, and the “logistics” of performing knee replacement surgery on a patient like ME!

“It doesn’t have to be now,”  he said.

“I don’t need to be the one to do it,” he reminded.

“You can take all the time you need,” he said.

It appears however…  that in all likelihood {I guess unless I die of maybe a thoracic aortic aneurysm} I will have to have my right knee replaced at some point!

Ahhhhhh, Universe you foxy minx.  You got me again, didn’t you?

Fool me once shame on you, fool me twice shame on me!