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.

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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!

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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.

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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!

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