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.

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!

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Nothing Means Something and you Need to Worry!

suspision

You know how when you just know something’s going to happen, but you’re just sure exactly when it’s going to happen; and all you can do is sit around and wait?

It’s unnerving, right?

You keep looking over your shoulder, expecting to see one of Tony Sopranos’ hit men and you think you see him in the shadows, every few minutes, but you never really see an actual figure; just a vague shadow, that disappears into an imaginary mist.

Well, I keep waiting to “pay” for my big, bash, birthday weekend, but oddly, the debt hasn’t been called in… yet.  I’m sure I can feel Tony’s guys, lurking in the darkness, but so far, nothing.

It was a decadent weekend!

Well, I say decadent…  I guess it was maybe a tiny bit depraved, at least for this 64-year-old woman, with PMR/GCA, a bad knee and numb, tingling feet!

I was a wild women!  I ate all the bad things, I drank lots and lots of red wine, I walked 4.2 miles in one freakin day, I ran around London like a Swirling Dervish!

And now…  I wait.

I  thought Monday would begin with a “BANG,” however as I carefully opened one eye at time, and peeked around my bedroom, I felt surprisingly “okay.”  Hmmmm?  Strange.  I was however, shall we say, cautiously optimistic.

Maybe there was like a time delay, on these things…  I mean it’s “pay back,” right?  And they say, “Pay back is a Bitch,” so it’s not going to accommodate your schedule or your expectations!  It will make you pay back, when you least expect it!  That’s only fair.

For some reason on Monday, after this totally self-indulgent weekend, I began to notice just how filthy my house was!

WTF?  Who’s been cleaning my house for the last 6 months, a 100-year-old, blind person?

Now, you need to know I have ALWAYS kept an immaculate house!  Even when I worked full-time, between me and the cleaning lady, who came every 3 weeks, we kept that place spotless.  I blame it on the OCD…  “a place for everything, and everything in its place,” will be my epitaph.

Anyway, feeling kinda good, I went to town!  First the bathroom, then the kitchen…  then with energy to spare (Seriously, I had energy to spare!)  I vacuumed the whole house and washed the kitchen and hallway floors!

By about 3:00 I was tired, but like Phil Collins, I was not dead yet!  With the house in order, I laid on the couch and watched several episodes of  “The Good Fight,” and I waited…

Tuesday, saw a little less activity out of me, because I was sore, but surprisingly not PMR/GCA sore!   No, sore like I had done too much!  Walked too much, bent down to much, stretched too much, lifted too much, pushed too much, pulled too much… you name it, I did too much of it!

And here we are, today is Wednesday, and still nothing.  

Still sore, but not crippled by it.  Not overly tired or incapacitated by fatigue, although I did sleep straight through the night and slept 9 hours!  Even my bladder and I were on the same page last night, remarkable! None of the aches and pains, usually associated with my auto immune conditions, are rearing their ugly heads… yet.

Where I come from, nothing means something.  If you ask someone what’s wrong and they say “nothing,” you know it’s something.  If the kids are quite (acting like nothing’s going on) you know they’re up to NO GOOD!  If you ask your husband what he’s thinking about, and he say’s “nothing,”  ...no wait, that one’s probably true!  He’s most likely really not thinking about anything at all.

So, nothing happening, means something’s definitely coming.

I’m Italian-American.  Actually I’m Sicilian-Irish-American.  There’s a lot of innate  loyalty, duty, pride, tradition and honour (yeah, ok, maybe it’s that honour amongst  thieves kind of honour) oozing through my veins.  And although I may have my foibles, and oddities, I pay my dues. 

A deal is a deal. I would never renege on an unspoken “agreement.”  I had a legendary birthday celebration weekend and I’m ready to pay the piper.

So here I sit, with nothing happening.

Watching.

Waiting.

Looking over my shoulder.

Ready to meet Tony’s guys and pay my dues.

How to Lose Friends and Disengage People

fed up

The quickest way I’ve found to lose friends or minimally, just be disengaged from them, is to become chronically ill.

Works like a charm!

It may take a while, but stick with it, in the end, they’ll crack!  They all do. Can’t say I blame them, really…  I mean seriously, I find being around me a bit of a bore and quite tedious, at the best of times.

Day after day it’s the same fucking thing…  I don’t even have to say a word; you can see it in my eyes, it’s written all over my face… “I’m exhausted,”  “I  don’t feel well,” “I have no energy.” “Today’s not a good day.” 

I dread when a friend or acquaintance asks, “How are you?”   I usually teeter on the edge of telling an outright lie and telling the boring truth, for at least several awkward seconds.  I’d say 60% of the time I respond with the proverbial “Ohhh, I’m okay… thanks,”  but there’s that other 40% of the time, where I just tell the goddamn truth!

“Hey you asked…. if you didn’t really want to know you shouldn’t have asked!”

“I feel like shite, actually.”

I’m exhausted.  I have no energy.  I don’t go anywhere.  I don’t  do anything.  I don’t see anybody.  I’m isolated and feel lonely, but I don’t have a real desire or the enthusiasm, to change that.  I miss interacting with people, but I lack the drive and “oomph” to make any meaningful interaction happen.  If I do make plans with you, I will most likely end up cancelling them at the last last-minute anyway, so what’s the point?

What a joy, huh?

As I watch them slowly back away, *their eyes darting left to right in quick, jerky, “fight or flight” movements*  I realise I’ve gone to far…  again!  It hit’s me like a ton of bricks, that the “question,” was, in fact, rhetorical!  It was asked with the intent and understanding that it would be answered with a pleasant, socially acceptable response, such as;  “Fine, thank you, and you?”  

The “question,” was NOT a genuine invitation for me open this smelly, maggot infested can of… can of, well can of MAGGOTS!

Sorry, I apparently misinterpreted the situation…  again!

I get it. I do.

Sick people are NO fun to be around at all!  Especially those of us who are only  chronically ill.  I mean maybe, if we had terminal illness of some kind, our friends might be more inclined to stick around a little longer (some good friends, may even last the duration if you’re terminal), but even terminal gets old.

When you’re dying, it reminds people of their own mortality and makes them think about the time they may or may not have left.  It makes them face those uncomfortable questions and look at their lives in earnest… and come on, let’s be honest, not many people want to take time out of their busy, fun, day-to-day schedule to examine their life!

I have seen many close friendships (and some family relationships, as well) crack under the pressure of a terminal illness.

A serious, chronic illness is maybe like one step down from a terminal illness… maybe two.  We’re really sick, but we’re not dying. We’re going to be sick for a long time, but still, we’re not dying.  We’re poorly, pathetic and perhaps perpetually needy, but for fuck’s sake we’re not dying!

I think our healthy friends get confused by the fact that they don’t really understand our illness; they’ve most likely never heard of it before, they can’t see it and let’s face it, most of us look (and act) like we’ve just become a bit lackadaisical and put on some extra weight!

All they know is that we’ve changed.  We are not as much fun as we used to be.  Maybe we don’t drink anymore.  Perhaps we can’t stay out past 9:00pm, or we don’t even venture out of the house after 5:00!   We don’t add much to the conversation, because all we have is our illness, our meds, our taper down schedule, our aches and pains, etc…

WOW! 

I just had the most sobering thought!  What if NONE of this RANT resonates with ANY of you and I’m the ONLY one who has had friends disengage?  Maybe I’m the only one who has allowed herself to be socially incapacitated by PMR/GCA.

OMG!  

Well… I’m glad I put that out there for all to see!

Anyway, I digress…  we have changed!  We are not the same.  We have morphed into totally different people and frankly, we do suck, a lot of the time.  It’s not out fault.  We didn’t choose this, it just happened. We’d change back to our “old selves,” in a second if we could, but that is not a choice we have.

I have every faith that some of my really good friends will be there when I finally shake the shackles of these diseases.  Oh sure, the relationship/friendship will be different…  we will have lost a few years of close, intimate, authentic sharing and growing, but we’ll pick up from where we left off and carry on.  Hopefully.

There is also the hope that I will have made some new friends!  Maybe I’ll have strong,  new friendships that will have been built on this festering can of maggots!  I mean come on, having all this in common, will surely bring us together…  if for no other reason than, “…misery loves company!”

Que será, será

I can’t stop it.  I can’t change it. I can’t control it. I won’t worry about it.

I accept that there are some people who are in my life now that may not be here in 1, 3, 5 years…  and that’s okay.

I freely release them,  from the now sickly, bonds of our friendship.

I have every faith,  I’ll see you on the other side…  maybe.

 

 

 

 

 

 

 

 

 

GREEN

with envy

Yes, I admit it…  I’m human. 

I look at the people around me, living “normal” lives, and I am resentful. 

Strong feelings of envy rise within me, as I continually witness their comings and goings.  I crave that seemingly unending energy, ease of movement and zest for life!  I see them (YOU) enjoying life, and all it has to offer, and frankly…  I’m annoyed that fate has chosen a different path for me.

WTF? 

Yes, yes, I know it’s never cool to ask “Why me?”  The “bigger,” more altruistic question would be to ask, “Why not me?”  …but I’m not feeling very righteous or noble today.  The more familiar accepting, philosophical, giving “me” has apparently joined everyone else and buggered off down to the pub, to have a few laughs!   

It’s not just the adventurous, out-of-the-ordinary, pleasurable stuff I covet…  No, oddly enough, I truly desire the normality. 

I’d like to able to able to accomplish (without feeling like I’ve run a freakin marathon!) those mundane, humdrum, ordinary tasks that people do on a day-to-day basis, without even thinking about it!  Make the bed, go shopping in town, meet a friend for lunch, go out to dinner after the “Early Bird Special,” has ended, get back to my volunteer work at the hospice…

Is that really asking too much? 

In an effort to hinder this snorkel (and possible suicide attempt) in the “Sea of Self Pity,”  a friend, kindly remind me of all the things that I am able to do.  Honestly (and I’m sure it’s because of the vile mood I’m in) I found several of the things on the list pretty pathetic!  Seriously, I think we’re grasping at a few straws, here.  I mean let’s not break our arm, patting ourself on the back because we removed a few scratches from the purple leather couches!

Admittedly, though…  there were a few things on the list that made me smile and feel a bit proud.  … but that’s not the point!  We’re not here to write about feeling proud; we’re to write about envy and the green eyed monster!  Damn it! 

{By the way… G_G, I do so appreciate you taking the time to come up with that list!  What a lovely thing to do to lift my spirits and try to make me see things from a different perspective!  And “Shhhhh,” I looked at the list again, and some of those things are kind of impressive! Thank you!!!!}   ; ) 

It’s now been 170 days (or 5.58 months) since my life was irreparably altered by two weird and virtually unheard of autoimmune diseases.  This means, I have somehow lived through, but without really remembering or truly experiencing;  Thanksgiving (albeit a British Thanksgiving, which is called, Thursday) Christmas (and Christmas shopping), New Year’s Eve & Day, Max’s First Birthday, Super Bowl Sunday, Valentine’s Day, Arielle’s Birthday (Did I even get her a birthday present?) and a plethora of GP, Rheumatologist,  and A&E visits, as well as numerous blood test appointments, bone density tests, scans, eye tests and a lot of poking and prodding by total strangers!    

I seem to have lost 5 1/2 months of my life! 

float through life, without really grasping, or experiencing it.  One day just melts into the next and it sometimes feels like I’m the female version of Bill Murray in a remake of “Groundhog Day.”  I catch only pieces of my life, as they drift by, but the “big picture,” always eludes me.  I feel as though I have lost my direction and most of my true purpose.   

How will I cope for the next 2-5 years?  What can I do to remain relevant? What do I do when these four walls no longer contain me? What if “ranting” isn’t enough? 

Hopefully today is just a glitch in the matrix.   

Perhaps today’s weather; which is cold, dark, rainy and windy, has me in a funk.   

Maybe I have “Cabin Fever.” 

It’s possible the “Green Eyed Monster” has crept into my brain and seeded these destructive, thoughts of self doubt.   

Maybe all of this “alone time,” has taken its toll on my mental health?

It’s not like me to feel “green!” 

This is not me!!!!  I usually take pleasure in your accomplishments and celebrate your successes;  I enjoy living (vicariously though I must) through you and enjoying your  experiences and triumphs!  I truly want to feel ecstatic for the lady who just returned from Nepal (my lifelong dream trip!!!) and India, not feel resentment!       

Here’s hoping tomorrow will be a new day and I will have taken on a new colour, because I’ve decided, green doesn’t suite me; however, I have realised, once again, that I am…. only human. 

Actual photo of me, taken this morning!   actula photo  TONY SANTIAGO MOVIE/TV FAN ART

 

Fellow PMR/GCA Sufferers: Please, Let’s Not Do This

sad mm 1

I recently joined a few PMR/GCA Facebook Groups.

Yeah, I know…  I’m not exactly thrilled with Mr Zuckerberg or his “Facebookgate” buddies either, but I’m still semi-addicted to that social media platform, as a way to keep in touch with friends and family; and it’s not like I get my news there!!!!!

I still throughly enjoy and I am 100% indebted to the Healthunlocked social health network!  For the past 5 months, the amazing HealthUnlocked PMR/GCA community (which has a membership totalling 6,473!) have provided me with support, empathy, understanding and sound, practical advice regarding my PMR/GCA diagnoses and everything that encompasses.  It’s my first stop each day, after I prepare my yogurt and count out my Prednisolone tablets!

However, joining the Facebook Groups, has given me access to a whole new group of people (in my same situation), but who communicate on a seemingly different level and in a more laid back, informal, and “social,” (versus informative/educational) manner.

Not better or worse, just different.

People on Facebook seem to speak more openly and freely;  it’s like they’re having a private conversation, with a friend, over coffee.  They share more about themselves; their family and their friends.  They will quite openly tell you if they’re suffering with hemorrhoids, or state, quite emphatically that “Beet Juice” has been “scientifically” proven to be a cure for PMR and GCA!

And that’s okay.  I feel strongly that it’s my responsibility to “fact check,” everything I read, when it comes to these two autoimmune diseases and I should be held accountable for what I choose to believe.  If I’m gullible enough to believe everything I read, without verification, well shame on me!  I deserve to be sold that big, ol, greasy, green bottle of “Snake Oil!” 

Anyway, I digress…  what I have noticed on the PMR/GCA Facebook group discussions,  that I have not observed on the HealthUnlocked site, is the slightest, on-going, undercurrent, of what I can only describe as a subtle, snideness. 

It is subtle, as I said, but like “pornography,” you may not be able to describe it persuasively, but you know it when you see it.  At least you know what it is to YOU!  After all, one man’s pornography, is anther man’s…  “Oh, never mind…”  I’m not going there!

What you should know, before I get into this rant…  is that, (according to numerous statistical websites, that I shall not reference, because they’re freakin boring!) is that women, are 2 to 3 times more likely to have PMR and/or GCA than men!

So, it stands to reason, that the majority of us on Facebook, HealthUnlocked, or any other  PMR/GCA dedicated site, are women.  

So… what I’ve noticed (and I am treading ever so lightly, as I absolutely do not want to piss anyone off!) is that some people, who are on perhaps a less challenging PMR/GCA journey, occasionally (and I’m sure quite unknowingly) make comments, that could potentially  make others (who are experiencing perhaps a more challenging PMR/GCA journeys) feel somewhat diminished…

Okay, this is bullshit, I’m just going to say it!  After all, this is my fucking rant and this needs to be said… 

Some people say a lot of shit on-line, that makes ME (and maybe some other people too!) feel guilty, embarrassed and in many ways inferior.

There, I’ve said it

Yeah, yeah, I know I have issues…  Yup, I’m damaged goods emotionally, but YOU have to accept that YOU need to take some accountability for YOUR words!

I mean isn’t that what basic empathy, in the context of a conversation, is?

When you say things like, “…pain is not an option for me,”  I immediately ask myself, why I’m apparently  such a big baby?  Why do I allow pain to be an option for me?

When you gloat, (and I mean gloat, not just casually mention!) that you “beat PMR” without ever taking steroids; it makes me wonder what the hell is wrong with me?

When I see someone write, “I just refuse to give into to it,”  I feel bad and ashamed, because I refuse to give into too, but “it” (like the hideous monster it is) turns around, punches me in the gut, and tells me to shut the fuck up and keep walking!

Good on you… no seriously, good on you!!!!

If you’re managing your illness without steroids, BRAVO! 

If you can control your pain with over the counter pain killers, well done!!!

If you can get through, more days than not, without having to take a “nap,” than by all means thank your lucky stars above, because many of us cannot.

If you have continued to work, manage a family, have a social life, or go to school, after your PMR and/or GCA diagnoses, than thank God, Mother Nature, and the Universe, because YOU are one of the lucky ones!

I agree 100% that steroid treatment is the WORST!  It totally sucks, but for those who suffer the devastating, debilitating and very “extreme,” symptoms of the PMR disease… they have no choice!  There are no options for them.  Steroids are the only thing that will reduce the inflammation and until they do that, they are fated to the experiencing the catastrophic symptoms of the disease.  {Note: Those impacted by GCA MUST take steroids or risk going blind, they have NO CHOICE!} 

The answer is simple… we need to acknowledge and accept that the disease(s) impacts everyone differently.  No two cases are alike. Nobody feels the same, exact symptoms as you do.  Nobody’s experience is the same as YOURS!  Your pain level is not the same as my pain level.  Your inability to move is different from my inability to move. Neither disease is “one size fit’s all.”

It saddens me when I read comments like the ones above…  It makes it sound like the rest of us aren’t trying hard enough.  Or maybe we’re weaker than you somehow, or that we’re just failures.

We are all in the same battle… and the majority of us are women.  Can’t we just accept that some of us are being attacked more vehemently, by these diseases, than others?  Can we recognise that not all PMR/GCA struggles are created equal?  Let’s not knowingly or unknowingly make our “sisters” (or our brothers for that matter!) feel bad, or feel “less than,” because they’re not managing or coping with their disease(s) as well as you are.

I’m ecstatic for those of you who continue to “have a life,” after PMR/GCA!  Seriously,  I am thrilled for you and I live, albeit vicariously, through you!

Go! See! Do! Enjoy… but please, while you’re out there, be our Ambassador 

Let people know that we’re at home, on the couch, taking a nap, because we have no choice!  We’re not at work, because we can’t work.  We’re a bit “dazed and confused” because steroid treatment was the only treatment we were offered; and without it, we’d perhaps be lying in a pool of pain, paralyzed, blind or half dead.

Let them know how horrible these diseases are!  Talk to them about the pain, fatigue, embarrassment and heartache that we experience every single day.  Help them to understand that these autoimmune diseases are REAL, they are devestating and that they affect everyone differently.

Let them know that YOU are one of the lucky ones;  managing to be productive and function, fairly normally, out in society!  However, let them know also, that it’s not easy for YOU either!  You too struggle with fatigue, pain, Pred Head, thin skin, loss of memory, moon face, weight gain, lack of self-confidence, etc, etc , etc.   The list goes on, and on, and on for you too!

Go! See! Do! Enjoy… but please, be our Ambassador! 

Don’t knowingly or unknowingly make us feel bad about ourselves or our ability to deal with our disease(s).

…because after all, we’re all in this together.

 

 

“I’m as mad as hell, and I’m not gonna take this anymore!”

Like Howard Beale, I too am mad as hell! 

mad as hell

Yes, I know you’re sick to death of my incessant rantings against the unfairness of life, growing old and of being sick! 

Tough shite.

Again, (and this means you too “Anonymous”) if you don’t like it, don’t read it!

I get that my tirades are becoming boring and empty and that nobody really fucking cares anymore… if they truly ever did.  Whatever; that doesn’t stop my need to… “NO,” my obligation to speak out. 

“Choosing with integrity means finding ways to speak up that honour your reality, and the reality of others… ”  ~ Terry Tempest Williams

Like it or not, this is my freakin reality.  I didn’t ask for it! I don’t want it… but “it” is my life now, I have no choice;  I’m obliged to speak my truth!

I don’t rant just for me…  I rant for all of the others as well;  the others that you (you who are fortunate enough to be healthy and well) don’t know anything about!  Please don’t misunderstand, I don’t criticise you… I used to be YOU!

Now… I’m with them.   I’m with the ones who sit, by themselves, on a couch and suffer in silence; the ones diagnosed with some weird, obscure, auto-immune disease that nobody’s ever heard of and that has since turned their lives into a living HELL.

For all you know one of them could be your kid’s “frail” teacher, your “A-hole” boss, or that co-worker who’s always taking time off of work.   

There are a lot of us out there who don’t want to be “a bother,” or any “trouble” to our family or friends.  All of us who, when asked,  “How do you feel?” will always respond,  “Fine, I’m fine…”   

The poor suckers, like me, who were unlucky enough to roll out of bed, one ordinary morning and have the god-damned day turn out to be ANYTHING, but ordinary!  

I speak for them… you want to know why?  Because some of them, are too sick, tired, frustrated and fed up to speak for themselves.  They’ve been beaten down, by a relentless disease that kicks their ass 24 hours a day, 7 days a week, every month, for years!

Some of them have just stopped trying.

They’ve stopped trying to explain to you, that they are not lazy.  They are not seeking attention.  It’s not all their head.  They know adopting a more positive attitude, won’t really change a damn thing.

When they’ve told you they were “exhausted,” they meant that they were physically, mentally and emotionally unable to connect with any reality, in any real or pleasurable way.  They were spent, depleted, drained, emptied, burnt out, unable to connect.

Did you hear them?  Did you listen?

Many of them, who have been stuck in this cyclone of shit, for a very long time…  feel that you don’t hear them anymore or that you even care…  so why should they bother to speak at all.  Better to save their energy for more important things.

When you say things to us, like;

“You don’t look sick,” 

“Maybe if you just go outside and get some fresh air, you’d feel better…” 

“Yes, I hear ya…  I’m exhausted too.”  

“Maybe you just need more exercise?”

“It will get better…  I’m sure… just push through it.”

“Have you tried….”

…please know, (and I say this ever so gently… ) we want to kill you!

We never would of course, but please know, NONE of these things is remotely helpful or productive.

We have a devastating, destructive, debilitating disease.

Auto-immune diseases are as “real” as a heart attack!  They are as real as cancer, asthma, diabetes, COPD, cystic fibrosis, heart disease, Parkinson’s… and all the rest!  Just because you can’t see the disability and we’re not represented by a distinguishable symbol like a trendy “Pink Ribbon,” or a cool, coloured, silicone bracelet… doesn’t mean our pain and our struggle isn’t real.

These diseases destroy lives.  They come out of nowhere, grab you by the ass; eat you up and spit you out.  Your life is irreparably changed.

It’s difficult to pin down the current global statistics, but the National Institutes of Health (NIH) estimates up to 23.5 million Americans suffer from autoimmune diseases.  That’s only Americans and the NIH numbers only include 24 diseases.  Many auto-immune  website  say there are over 80 different auto-immune related diseases!

That’s a lot of fucking sick people!

We’re out here.

And hopefully we are (in much greater numbers) becoming mad as hell and not going to take it anymore! 

I have fantasies of a REVOLUTION; a revolution where people impacted by devastating auto-immune diseases like Polymyalgia Rheumatica (PMR) and Giant Cell Arteritis (GCA) demand to be heard!  A revolution where our GPs and Rheumatologists are forced to take us and our symptoms seriously!  A revolution where drug companies are encouraged and incented to look for better, more effective medications to treat and alleviate our diseases symptoms.  A revolution where we’re not embarrassed or uncomfortable to openly talk about our disease, and we don’t automatically just make light of it to ease tensions.

A revolution where we have our own immediately, recognisable symbol or brightly, coloured bracelet.

Perhaps even a slogan?

How about…

Autoimmune disorders:  “Yes, even your body hates you!”

 

 

the worst thing

 

 

 

“My Rheumy Rocks”

838-02489616

Yesterday, I saw my Rheumatologist, for the first time, as an NHS patient.

Okay, so maybe the surroundings weren’t as upscale as they were at  Brighton’s Montefiore Hospital where I had seen her three times previously.  I wasn’t offered coffee or tea, as I checked in at Reception, and the standing room only, Waiting Room did smell a bit like old newspapers and perspiration (not mine!),  but “HEY!” the building was built in 1828 and I wasn’t going to be asked to pay £155 for this appointment, so for me…

“It was all good.”   

She only made me wait maybe 10 minutes over, my scheduled appointment time; which is about the same length of time, I had waited previously, as a Private Patient.  Her examination room was about the same size; it was clean and orderly and appeared to have everything she’d need to treat patients; a working computer, an examination table, with a sanitary paper roll, a privacy curtain, cabinets filled with lots of “medical” looking odds and sods.  So, check, check, check.

So far, so good.

I had printed out my daily “How I Felt Today” journal (because, “Yes,” I’m a bit OCD), and I knew it would allow her to see (at a glance) what’s been going with me, since I tapered to 50 mg and then to 45 mg.  It included all the normal entries you’d expect from someone who has GCA & PMR and who’s been on high dose of steroids for 5 months;

  • chest and upper back aching
  • heavy arms & legs
  • exhausted
  • not sleeping
  • fatigued
  • feel “high”
  • felt good

  • jittery

  • no energy

  • arms and legs tingling and numb

  • tinnitus more pronounced

  • still feel tingling/numbness in feet

  • felt shite

  • arms and legs feel like baby centipedes walking around under my skin

  • slept 9 hours

  • numbness and tingling in feet, worse; feet feel freezing, but warm to touch

  • right knee swollen, hurts like hell, cant extend or bend; GP thinks it’s a Baker’s cyst?

  • aches across back; shoulder-blade to shoulder-blade

  • had to take a nap for 1st time is a few months! WTF?

She didn’t seem too alarmed by anything she read…  She mentioned that I was still on “high doses” of steroids and a lot of what I was experiencing were either the dreaded “side effects” of Prednisolone or the equally dreaded “withdrawal symptoms,” from the Prednisolone.

Apparently it’s a lose, lose scenario; damned if you do… damned if you don’t.

She did however, notice the “swollen, non-functioning right knee,” which kind of surprised me, as I didn’t think that would be her area of interest or expertise.

Although… come to think of it, it may have actually been my 5′ 10″ rubenesque frame; wearing a black & white tee-shirt, printed with the word, “QUEEN,” (meant to depict my status, not the Band) across my (too old to be appreciated big bosomed) chest, as I did kind of lurch into her exam room…  That may be what got her attention, but I’m not sure.

My GP had said that she thought “it” (the uncomfortable, giant, lump behind my right knee) was a “Bakers Cyst,” and she had ordered an Ultra Sound, back in early March.  However, that appointment hasn’t come through yet.

That is one thing about the NHS;  you won’t pay, but you will wait!

Here in the South East, especially in a highly populated area like Brighton, the government cuts have crippled our beloved NHS.  Our Doctor’s, Nurses and Admin Staff are overworked and under paid.  There aren’t enough hours in the day to service the multitude of people needing care and/or procedures.  Our NHS Staff are stretched beyond capacity and are continually being asked to DO MORE WITH LESS.  It’s heartbreaking.

“Would you like me to take a look at the knee,” she offered.

“Sure,” I said, having no idea what to expect, but thinking “…isn’t she a Rheumatologist?”

Before I knew it, I had dropped my trousers, and she was pushing, prodding and commenting on the inordinate amount of fluid she was seeing and feeling!  She seemed intrigued.

I heard her say, “Do you want me to inject a little cortisone in there? 

“Ummmmmmmm, sure,”  I responded, with not a lot of conviction.

Again… before I had time to reconsider, she was spraying a cold numbing agent on my knee, and before it had barely touched my skin, she thrust in what appeared to be a HUGE needle (it could have been a Turkey baster); in any case it looked to be something they might use to inject cortisone into an elephant’s knee!

 “Let’s just take some of that fluid out first, shall we?” 

“Owwwwwwwwww!  Okay!” 

As she used her left hand to (not so gently) knead the fluid into the area where she had stabbed me with the turkey baster; while she used her right hand to manipulate its sucking functionality; carefully she coaxed the whitish/yellow/brownish liquid into the elephant syringe!

While she did this, she made sounds like, “Hmmmmm, andAhhhh,” and used words like “…viscid, gummy, syrupy.” 

What the hell was happening???

I was at the rheumatologist’s office, not an orthopedic surgeon’s office!

Several minutes, and three viles of yucky liquid later, it was time to inject the cortisone.  Thank goodness, at this point I was in shock and feeling no pain, so this part was a piece of cake!

Before I knew it, I was pulling up my jeans and wondering what had just happened?

I hobbled back to her deck and was told to rest the knee for the rest of the day and to ice it.  Okay…  that’s sorted!  Now, back to the business of PMR/GCA.

As we sat at her desk, she told me she was writing up a NHS referral for an Electromyography (aka EMG).  This test will provide information about the muscles and nerves in my feet and hopefully explain the pain, freezing cold sensation, and numbness.  She does not think it is related to the PMR/GCA, or that it is a side effect of being on Prednisolone.

So, “Wooooooo Hooooo,” it appears I may another, totally unrelated medical condition to have to manage and follow-up on!  …but cool, the suspected peripheral neuropathy, is on its way to getting sorted or at least identified.

She then wrote up another referral for a CTPA (a CAT Scan of the chest); requesting an “old school” contrast dye, that does not contain iodine. This was ordered previously, under insurance, but was canceled when they realised the iodine contrast dye could put me into anaphylactic shock!   Okay,  cool again, the constant cough, intermittent chest pain/pressure and palpitations on their way to getting sorted or at least identified/discounted.

Rheumy wants to see me to stick with the proposed taper down plan, see her again in 4 months, have my blood checked by GP every three months and she assured me that I “might” just start feeling like myself again, after I hit 20 mg a day…. that will be in  August.

It’s going to be a long, hot summer.   

My Rheumatologist may be a woman of few words, but she is all “action.”  I totally appreciate this.  She is knowledgable, decisive and confident; she doesn’t waste time waiting for things like ultra-sound scans, when she can see and feel an obvious painful, fluid build-up, surrounding a knee!

If you recall, I had had reservations about her practice a few months ago.  Her Admin was a quite snippy and condescending to me over the holiday’s when I was scared, had concerns and needed medical advice about my newly diagnosed PMR/GCA finding. Luckily, I have not had to deal with the Admin since and my Rheumy has proved herself to be “one of the good ones!”

I consider myself very fortunate, because I have read the horror stories about Rheumatologists who believe they “walk on water,” or the ones that “know better than  their patients,” about what’s going on with them.”   It’s a mind-field out there and thoese of us under the NHS, don’t necessarily get to see the specialist we’d like to see. For the  most part you go where you are directed to go.

So I have deemed today, “LOVE YOUR RHEUMATOLOGIST DAY,”  (but only if you truly do!)  i love my rheumy

 

 

 

 

Dear Anonymous…

fuck you

 Is that “magnificent” enough for you?

You recently left feedback on my blog site that said:

“Hey, you used to write magnificent, but the last few posts have been kinda boring?  I miss your tremendous writings. Past few posts are just a bit out of track! come on!” 

“Fair enough,” I thought!

The feedback was much appreciated and I actually went back to you, straight away, asking specific questions; trying to get a better idea of what you thought had changed and how I might turn things around.

Was it the subject matter? 

Was it the fact that I may have lost some of my anger?

Which posts did you think were really good, verses which ones not so good? 

You made your penetrating observation on April 14th at 7:25 am; I responded on April 14th at 7:27 am.  I’m thinking, you were probably still on-line when I responded!  It’s now April 16th and still nothing from you…  Is that really all I’m going to get?

No additional words of wisdom? No tried and true blueprint for “How to be a Better  Writer,” or cunning tricks of the trade, teaching me how to “Grab Your Reader?” 

Well, you’ve let me down.

And by the way… what’s with the “Anonymous” anyway?  Did you have to change your User Name or create a whole new profile, just to leave that feedback for me, or are you always Anonymous? 

Does using that label allow you the anonymity you need and give you the balls to say what you think, without really putting yourself out there?  Does it provide just the right amount of refuge, so that you feel empowered to speak your mind, but not vulnerable and exposed to any comeback you might receive?

Look… I really do apologise that you have found my blog posts “boring,” of late.  It may have something to do with the fact that my life is fucking boring! 

Think about it…

I go nowhere.

I do nothing.

I see no one.  

Not sure how much you know about what having a chronic illness is like… but I gotta tell ya, it’s not fun, interesting or entertaining in any way.  You don’t get to turn it on and off, at will.  You don’t get to control the extent to which you will or will not be impacted by it.

It “controls” you.

It violently seizes you, by the back of the head, pushes you to your knees and tells you to get on with it…  You don’t get to bargain or negotiate.

It tells you when, it tells you where and it tells you for how long.

You just submit.

So yeah, I guess if a few of my posts were “… just a bit out of track,”  I may have been a little preoccupied getting fucked by one of my two, chronic, auto-immune illnesses.  Or perhaps it was from the vile side effects caused by the toxic corticosteroids I’m taking; or the obscene withdrawal symptoms I experience, every time I reduce my dosage. 

Oh… and just so you know, I don’t write for anyone but myself!

I write to get all the anger, fear and resentment out of my head, so that I don’t end up imploding!  If you read it and like it, I’m happy with that.  If you read it and you don’t like it; well, I’m sorry my words didn’t resonate with you.  Maybe next time.

I will suggest to you that if you want to give someone “constructive” feedback, you might want to follow through.  Providing vague, half-assed, glib gibberish is not helpful.  It’s a waste of your time and it’s a waste of my time.

You want me to “…come on,” well give me something I can sink my teeth into.

You know magnificent?”  

You miss “tremendous?” 

Then, please, by all means, point the way…

 

 

“Un mal pour un bien”

toilet 2

“The most beautiful peonies I ever saw… were grown in almost pure cat excrement” ~Paul Proteus, Player Piano

Is it just me, or have you noticed that whenever something truly awful happens in your life, and you think to yourself, “There is no way I’m going to survive this;” you not only end up surviving the dreadful circumstance, you ultimately bloom and flourish, because of it?

The horrible thing still happened, you still had to deal with it, and you had to fight like hell to make your way through to the other side, but at some point down the line, you realise…  that if that god-awful thing had not happened, you would not have;

  • learned that invaluable lesson
  • had that epiphany
  • made that life changing decision
  • met that amazing person
  • had that/those incredible experience(s) 

Here’s an example…  I was stuck in an unhappy marriage. (Well, to be honest, it wasn’t the first time.. but that’s another story!)  It was my second time around and now I had two children!  I was miserable, but there was no way I was going to get divorced (again) and put my children through that!  They needed a Mother, a Father and a “real family,” regardless of how miserable we all were! (Yes, I hear it now… but, believe me at the time, it made perfect sense!)  

I was in my mid thirties and I believed I could hold this facade together for the next 14-15 years; and then once the kids were grown and gone… well, you get it.

So this one day, I received a call from my Dad (which thinking about it now, some 28 years later, was odd, because Dad never called!).  He called to tell me my Mom had been to the doctor and there was a “spot on her lung.”  They were pretty sure “it was cancer” and the next step was to speak with an “Oncology Surgeon.”  

In those few minutes, my entire world… everything I had ever believed in and trusted, came crashing down around on top of me.  There was no way I (or probably Mom, for that matter) would survive this.  

To make a long story, less long…. Mom had surgery; we were told they “got it all.”   They hadn’t.  Three months later it turned up in her brain and another surgery was scheduled.  Several months after she had recuperated from brain surgery, it showed up again in another part of her brain… we scheduled another surgery.

How many surgeries can we ask this woman to undergo? 

In the 20+ months from my Mom’s diagnoses to her death, she and I became closer than we had ever been.  And being her only daughter (and obviously her favourite) we were pretty close to begin with!

When I visited with Mom, we had “quality time together; shopping, talking, eating cakes and drinking tea, laughing, me painting her finger and toe nails…  we talked about anything and everything. Neither of us, holding anything back (Well, to be honest, I did hold some things back. I had to or she would have died of a heart attack right there and then!)

So this one day, as we’re taking about my unhappy marriage…  and she tells me, straight out that she does “not like my husband” and that actually…  she has not liked him since “day one!”

Wait what?

My Mom had always been absolutely lovely to my husband. Kind, generous, polite.  I didn’t have a clue that she felt this way!  As she spoke she used words like, “don’t trust him,”  “something wrong there,” “never liked him.” 

WOW!  Who knew?

I told her my plan to stick it out until the girls were grown and she was visibly displeased.

Right there and then, from her death-bed, she gave me a at least 101 reasons for NOT STICKING IT OUT!  She said I needed listen to my heart and do what was best for “ME.”  She explained that my girls would be fine as long as I was happy and at peace with myself. She insisted they would adjust, they’d adapt and they’d be fine.

She further explained (and quite poignantly I might add) that “life is short,” and none of us are “guaranteed anything.”  She talked about her life and some of her regrets…  and as I sat there, listening to this amazing, 69-year-old woman, siting in her death-bed, bestowing all this wisdom and honesty on me… I had that epiphany!

I realised she was 100% right!

Life was to freakin short and my kids would be fine!  It hit me like a ton of bricks, that living the next 14-15 years, miserably (and supposedly “for the sake of my kids”)  was not a viable option!  It was stupid!  It wasn’t good for them and it wasn’t good for me.

Mom died.

We buried her…  and within a few months I found my voice and told my husband it was over and asked him to move out!

I have NEVER looked back.

The point is that in those 20+ months, of living hell, I died a thousand deaths. I did not think I would survive the loss of my Mom.  Not mentally, emotionally, or physically, but I did.

Truth is, not only did I survive,  I actually came out the other side stronger, tougher and more independent than I ever had been (albeit motherless), but if I could survive that…  hell, divorce was going to be a piece of cake!

Out of something horrific, came something awesome.

It happened again when my brother Charlie was diagnosed with Pancreatic cancer. I was so distraught by his illness and undeniable upcoming death, I had what can only be described as a mini nervous break down.  I suffered from “complex grief” and pretty much lost control of my life.  After a few years of “coming apart at the seams,” it finally hit me…  again!

Life is too fucking short!

I needed to get off my ass and live the life Charlie would have lived, if he had been given that opportunity; because he sure in hell wouldn’t be sitting around feeling sorry for himself!  He’s be living life!

I told work I would not be able to take on that all important, gazillion dollar, global project, that I knew would ultimately “kill me.”   My husband and I decided we needed BIG changes in our life; so we picked up all of our crap and we moved to England!

Hey, when only about 64% of American’s even have a passport, picking up and moving to a foreign country (even if it is an English-speaking country) was pretty freaking fierce!  Charlie would have been proud!

It was the best decision I ever made…  well after that divorce decision actually.  Ummm, the second divorce…. well the first divorce was a good decision too.  Oh, never mind!

In the last 8 years my husband and I have travelled throughout Europe, taken wonderful road trips across England, met some fabulous people (who have become good friends), seen sights I never (in a million years) expected to see and I have realised, that my life is so much richer and fuller than it ever would have been, had we stayed in South Florida.

Again, out of something bad…

It’s happened again and again, throughout my life.

More recently, I’ve been plagued with these two dreadful auto-immune diseases and they’re kicking my ass!

They are unbearable, atrocious, insufferable, oppressive and so much MORE!  .. BUT (and as you see that’s a BIG BUT!) in the last 4 months, since being diagnosed I have:

  • started to understand that I need to love and take care of myself, first, 
  • learned that I have a “creative” side, 
  • discovered that I may have a panache for writing (something I LOVE to do), 
  • learned to rest and relax
  • felt unconditional love from family and friends, 
  • virtually, met MANY amazing, knowledgable, informed people, who are in the “same boat” as me,
  •  discovered that some people think I’m entertaining and dare I say “funny,”
  • found a voice inside me that has NOTHING to do with Project Management!  
  • learned that it’s okay to say “no” and not give a reason,
  • found the strength to speak my mind (okay I may have had that one!) 
  • slowed down enough to really  “hear” another person’s story 

The list could go on and on.

So now,  I’m in a quandary… do the benefits, that I’ve gained from having these detestable diseases…  possibly outweigh (or at least equal) the disadvantages I have experienced from having them?

I know it sounds radical, absurd, ridiculous, really!

….but wouldn’t it be dishonest of me not to, at least, ask the question?

“Head to Toe” – A layperson’s Guide to the Signs and Symptoms of PMR/GCA; and the Possible Side Effects of High Dose Steroids

head to toe

First, let me start by saying, I am by no means a PMR/GCA “expert.” 

There are many people who have had one (or both) of these rheumatic conditions, for a lot longer than I have; and have dealt with and managed their symptoms and side effects more effectively and courageously.

However, for a PMR/GCA “Newbie,” this blog post might prove to be a helpful (and humorous) look at what you MIGHT encounter on your journey.

And, please know, this is very much YOUR journey!

If I have learned anything in the past  four months (124 days, 7 hours and approx 36 minutes) it is that PMR & GCA are NOT one size fits all!

They manifest in (and affect) each of us,  quite differently.  There are, of course some very standard signs and symptoms, but there are also some very unique, individual oddities that cannot be discounted or just shrugged off as not being important.

Here, in this amateur, lighthearted, but hopefully relevant Guide (and I use that term loosely!) you will find some symptoms of PMR and GCA, side effects of being on high dose steroids, steroid withdrawal symptoms, along with some of the other physical, mental, and emotional manifestations that I encountered on my journey, thus far.

It is often impossible for me to differentiate a disease symptom, from a steroid side effect, from a steroid withdrawal symptom, from a non-related PMR/GCA ache or pain… I guess what I’m trying to say, is that I cannot tell you, what’s what.  All I know is that I feel like crap most of the time and just have to deal with it.

My Rheumatologist struggles to separate “what’s what” as well!  She believes, that after my being on high doses of steroids for 4 months, I’m experiencing some of steroid’s worst side effects.  And since I have also been “actively” tapering down (I’m down from 80 mg to 50 mg), she says I’m suffering from steroid withdrawal too!  Oh, I almost forgot… it has also been suggested (by another Rheumatologist) that my body is actually resistant to steroids!!!!  So, ain’t that a bitch!

Some of what I write may resonate with you… much of it may not.

That’s okay.

What’s important is that you are made aware of the many possibilities that you may encounter on your journey.

“Knowing Is Half the Battle.”  ~ G.I. Joe

Head (neck and shoulders)    

head and shoulder

Ahhhhh, the head!  My journey began with a diagnosis of GCA, in November 2017, so my head was my primary complaint.

My immediate symptoms included:

  1. A sudden and intense, bilateral headache (more painful on the left side, than on the right)  This lasted for 19 days (and 18 horrible nights).
  2. Tenderness (I say tenderness it was pain!) in each of the temple areas of my head.  It actually hurt to “touch” my temples!
  3. Sharp, stabbing pains all over my head, that would come and go.  On the left.. on the right… in the back… behind my eyes. Ouch!!!!  WTF?
  4. Excruciating pain, where the bottom of my skull met with my neck/spine.  It hurt more when I tried to look up; the pain became crippling!
  5. Bilateral pain in my neck!  Literally a pain in the neck! It was like a bad strain or muscle ache;  it felt like I had overdone it, with some heavy lifting. It started just below my ears and radiated down into the tops of my shoulders.
  6. I also noticed my eyes weren’t focusing as quickly as they normally did; when I removed my reading glasses, it would take few moments for my eyes to adjust and focus.
  7. Since the initial onset, I sometimes have had difficulties lifting my arms, as my shoulders are just too weak!  What’s up with that?  I can hear my brain telling my shoulders to lift my arms; and my shoulders recognise the command, but they just don’t have the strength to lift the arms! How weird is that?
  8. The range of movement in my neck was and still is noticeably reduced.  Makes driving tricky and definitely no footy or rugby for me!
  9. My tinnitus became much more noticeable and bothersome after the initial “headache from hell” began. It’s always there and occasionally plays up and becomes even more annoying than usual.

Upper Back (and arms)  

body 1 (1)

In the 19 days, between the sudden onset of the headache and me actually going to the GP…  (Yes, I realise that was stupid, but in my defense, I did visit my Osteopath, three times!  He was sure he understood the problem and could fix it.  Not!)  I developed odd aches and pains in my back and arms.

  1. I developed a “heaviness” between my shoulder blades.  Not a pain per say, but a heavy, achy feeling across the top of my back. I still get it today; it’s an annoying ache that radiates into the shoulders and down into the upper arms.
  2. My arms felt like thick, heavy lead pipes, that have been screwed into my rigid shoulders, and tightened into place with rusty screws.  Simple tasks like lifting grocery bags and changing the sheets was (and sometimes till is) impossible for me.
  3.   In the beginning, my triceps ached, all the time.  It felt like I had over-exercised them at the gym… I wish.  Now that ache comes only occasionally, and when it does, it stops me from doing simple household chores.
  4. Stiff elbows?  You know you have stiff elbows, when you can’t extend your arm out straight!

Torso (and miscellaneous other areas)

torso

“Excuse me…  Is there an elephant sitting on my chest?”

  1. There’s a “heaviness” across my chest, as well as my  back.  This ache feels like “pressure,” like there’s an elephant stepping on my chest!  The ache goes from shoulder to shoulder, across my collar bones. It’s feels like I’m having difficulty breathing, although I don’t really think I really am.
  2.  Heart palpitations are fun, right?  Noooooooo!  Especially if you have a Mitral Valve Prolapse (MVP) and already take a Beta Blocker to control the palpitations.  I can be sitting on the couch, relaxing, watching TV and my heart starts doing the Cha Cha Cha, in double time!
  3. Not in the torso area, but I have a weird taste in my mouth, all the time…  No matter how much mouth wash I use or how many times a day I brush my teeth, I have an odd (not pleasant) taste in my mouth!! Yuck.
  4. My teeth ache!  Not just one or two teeth and not all at the same time…  but at some point within the last 4 months, each one of my teeth has HURT like hell!!!!  I have been to the dentist twice and x-rays say there is no problem with any of my teeth,    so it is more than likely nerve pain; perhaps from reduced blood flow, but nobody is 100% sure.
  5. My hands (not even close to my torso, sorry!) get cramps so badly that they actually become DEFORMED.  The muscle, in the hand, under the baby finger, collapses into the side of the palm; pushing the baby finger and ring finger out away from the other fingers.  It also causes them to bend into the palm, like Dupuytren’s Contracture.  Very attractive!

Hips (buttocks and hamstrings)

glutes 1

I literally have a pain in my butt!

  1. My buttocks ache.  It’s usually one side or the other , thank goodness it’s usually not both at once! However, I must say, it hurts like hell and it’s annoying.  I have difficulty walking when this particular pain kicks in and I feel like I’m 100 years old. .
  2. The pain in my butt, actually radiates down into my hamstrings… and it feels like “sciatica” (if you’re old enough to know what that pain feels like) It feels like nerve pain, but with muscle ache twist.
  3. My hips get tight and stiff.  It’s hard to walk and it makes getting up off the couch almost impossible without assistance.  (Yeah, that’s fun, having to ask your husband, who is 10 years younger than you, to help you get up from the couch!  Not awkward at all!)

Thighs (calves and feet)

legs1

I was diagnosed with GCA first, but it has been agreed by two Rheumy’s and a GP, that I have probably had PMR for at least 24+ months prior to the GCA diagnosis.  Unfortunately, the PMR went undiagnosed because, my GP at the time, did not “connect the dots,” and believed that I was experiencing normal aches, pains, stiffness and malaise associated with “women of a certain age.” Needless to say, he is no longer my GP.

  1. My thighs ache relentlessly.  I realised, after the PMR diagnoses, that my thighs have ached for years!  The pain usually started at the end of the day, when I sat down to relax, my thighs would ache. It still happened today, just not as often.
  2.  I get cramps in my calves.  They hurt, but they are not the same as the “deforming” cramps that I get in my hands, thank goodness!  A warm bath usually resolves them and I have recently started taking Magnesium, which is said to help.
  3. My feet get stiff and numb. Not numb like when they’re cold… more of a warm, tingling, numb feeling.  I can feel them, but they just feel weird and tingly.
  4.   My legs, in general, sometimes feel like large, tree trunks.  They’re heavy, rigid, and feel like they’re swollen twice their normal size. They’re not of course, but that’s what it feels like.  I shuffle around, dragging them along, like The Hunchback of Notre-Dame.  Maybe a slight exaggeration, but only slight.

Other Physical, Mental and Emotional Impacts

mind

The list of physical, mental and emotional symptoms grows everyday…  the symptoms come and go.  However, I never really know what’s related to the auto-immune diseases, the steroids, and/or the withdrawal from the steroids!  And of course,  there’s always a possibly that whatever I am experiencing is actually fueled by my lack of physical activity, lack of social interaction, isolation, depression, anxiety, etc, etc, etc.  and not actually related to any of the above!

Here is a list of the physical, mental and/or emotional symptoms I have experienced in the last four months.  What has caused them specifically, I do not know…  Some I still struggle with, while others are gone, at least for now.

  1. Indigestion
  2. Brain fog
  3. Extreme fatigue
  4. Lack of appetite
  5. Dry skin
  6. Inability to focus/concentrate
  7. Constipation
  8. Bloating
  9. Blurry vision
  10. Hand and leg cramps
  11. Stuffed nose
  12. Short tempered
  13. Confusion
  14. Feelings of isolation
  15. Diarrhoea
  16. Runny nose
  17. Vulnerability
  18. Unwanted facial hair (Is there any other kind?) 
  19. Insomnia
  20. Dry, split nails
  21. Back fat (nice!)
  22. Constant dry cough
  23. Thinned skinned (literally)
  24. Easily bruised
  25. Breathlessness
  26. Loss of vocabulary
  27. Lethargy
  28. Moon Face
  29. Low grade temperature
  30. Lack of stamina
  31. Memory issues
  32. Overwhelming sadness (sometimes)
  33. Dry, cracked fingertips
  34. Lack of interest in most everything…

I could go on, but I won’t… it’s too depressing!

Don’t despair… this too shall pass! 

We will get through this! Remember these diseases are thought to “run their course,” within a few years to several years.  And some people will be lucky and get through it in even less time!  Yeah, sure, many of us will be dependant on corticosteroids for several years, but hey,  it could be worse right?  And it’s a helluva lot better than the alternative.

Look, there’s no getting around it, having PMR and/or GCA sucks big time!  It does!!!

And having both together is just a cruel and insidious, ruse of nature!  …but the stress we create by trying to fight an impossible, invisible battle, only weakens us further and make matters worse!  We need to stop fighting and start accepting.

We must somehow learn to graciously accept what is being given to us and try to understand the lesson the Universe is trying to teach us.

Namaste