Category Archives: Rheumatology

No More Mr Nice Guy!

“I am sick.”


“You know I’m sick.” 

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

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

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

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

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

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

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

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

“Seriously!  WTF?” 

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

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

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

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

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

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

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

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

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

Well, I say, “No more Mr Nice Guy!”

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

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

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

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

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

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

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

Well, we can’t!

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


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

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


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

~Ralph Waldo Emerson




Nothing Means Something and you Need to Worry!


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,” 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.



Looking over my shoulder.

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

“My Rheumy Rocks”


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