If you're at all interested... this post does becomes more relevant as you read on...
Yesterday was my knee replacement surgery; it was originally scheduled for 9:00 am and then changed to 3:00. Well "Murphy's Law" then reared its ugly head and it became, 4:00, then 5:00, then 6:45!
"Hungry? Me? Nah... No worries, 12 hours ago!"
So fast forward... All went well and I'm recuperating nicely... I think. "Ouch"
Here's the "relevant" part... The admission process was, shall we say a little "rocky."
The nurse was pleasant enough, but insistent on making long, detailed, informative comments on pretty much every answer I gave her, to her admission questions. She had something to say about the surgery, about the spinal I would be getting; she even explained my Mitral Valve Prolapse to me, even though, I told her I have lived with condition, since I was 22.
I was polite and listened intently to a lot of "stuff" I already knew, UNTIL she began to lecture me on PMR/GCA.
Me, in my head: "Ohhhh and do YOU have PMR/GCA? OH! No... you don't. Okay than can you please, shut your gob!
She carried on and on while I smiled and nodded my head, at the appropriate, pauses. It wasn't until she changed tact and started "schooling" me on my Prednisilone intake, that I lost it.
Her: "How much are you on now?"
Me: "13.5"
Her: "Oh, that's nothing! That's not a high dose at all!"
Me: "Yes, but I've been on it, at varying doses, continuously, for 15 months."
Me: "I stared at 80mg and I have tapered down"
Her: "How long were you on 80mg?"
Me: " I think 6-8 weeks."
Her: "Oh, that's nothing! I've had patients on 80 mg for 6-8 months!"
Me: "Ok, but and I then tapered by 5 mg,so another 6-8 weeks at 75, 70, etc.
Me: "And I've had a few flares, when're I had to increase, back to 60mg."
Her: "Well, blah, blah, blah, and blah, blah!" I've had patients....
My Siciliano, Irish, American temper "flared" (no pun intended) and I started pacing the room, looking out the window and holding my tongue. My OH "knew"what was coming, and tried to get her back on track. ...but to no avail.
Me: "Thanks very much for the lessen about Prednisilone. Do you think we could please get back to the admissions questions? *said in a frustrated tone*
Her: "Oh.... yes, of course. What do you prefer to be called?"
Me, verbally: "Melissa."
Me, in my head: "Melissa, the person who has actually had and lived with PMR/GCA for 15 months ... and has swallowed the freakin Prednisilone, knows the benifits of; and experienced EVERY single side effect that they have to offer!"
Why, oh why, does everyone know more about my diseases and meds than me?
Years ago when I was heavily pregnant, I became extremely agitated and finally vocal (was quieter in those days) when a nurse, for the umpteenth time, told me I had had an echocardiogram and so would need special treatment once I went into labour. They all refused to amend my notes each time I explained I hadn't - and I finally had to see my own GP and get them to write a letter. Even still it was ME that insisted that scrub it out with red ink about five days before I had my daughter! They had mixed up my notes with a geriatric lady! Story of my life! X
I've been where you were too many times before. Not for a discussion on pmr yet. I have actually kicked nurses (and after an on call doctor visited on my doctors day) told them not to come back. I have even made pastors leave my room when they told me I wouldn't be in the hospital if I prayed more. Don't get me wrong. These are the things that have happened over the course of years. But, it shouldn't happen at all to a patient. We are there to receive the best care possible. Not to be given undo stress.
Oh, and when I was first diagnosed with fibromyalgia in 1986 (and very little was known about it) my first rheumy told me "the good news is that this will go away in 12-18 months!". A year later I got fired as a patient for not responding to treatment! 🤣
I hope your recovery goes very well and that you can put Nurse Ratchett behind you soon! 😉 Take care!
I like your style!!! ...and OMG! A pastor told you that??? WOW! And I love that you were "fired as a patient for not responding to treatment! " Hysterical! ...not in a good way though. 😡
A lot of good came out of being fired though. Because of that I ended up at OHSU a learning hospital where I met my new rheumatologist, one of Englands finest who traveled the globe educating doctors on fibromyalgia. He retired from patient care after 15 years of being my doctor ( no, that's not why he retired, haha!) He wrote books, still traveled and educated, and now he's back at OHSU (Oregon Health Sciences University) as a professor. He was my godsend! Silver linings, right?
Are you still in the Portland area? Still going to OHSU? Maybe you could go up to U of Washington they have a fast track for PMR/GCA - you will see a Dr with in 24 hours. PM me and I will get you some details.
Unfortunately, after Dr. Bennett retired, we also got transferred to the most southern part of Oregon. That was a nightmare for medical needs and treatments. Rotating doctors didn't even know how to pronounce the names of diseases. In just the last couple of years, we've moved back. I have much better medical care (in Eugene)
Have been in the area for 6 & 1/2 years - half of my doctors are at Providence St Vincent and the rest at OHSU. My Rheumatologist is at both and my Endo and Primary Care are at OHSU but my Neurologist and Gastro are at Providence
Wow! You had almost every specialist I had up there! I've also had overnight stays at Providence and St Vincent's. Of course my favorite is OHSU! I wish I was back there again!
OMG again! Dreadful. On the slightly brighter side I'm beginning to think my medics should be offered up for Sainthood (only in comparison of course - they have their moments!).
Hi mamici1, that's quite a story. I hope you recover from the op quickly. When the the guys in the hospital ask me what would you like to known as by the staff, I usually say "your Lordship" that usually 'cuts the ice' 😉
Glad the surgery is over and you can start the healing process Melissa. Too bad the prep process with that nurse and delays tainted your experience. I thought you were going to say nurse “Ratchett” was going to berate you for still being on pred (which seems to be a common experience with us and medical professionals). The opposite, one that won’t shut their cake hole, sounds even more painful to endure than the surgery itself!
I had my pre-op appointment for my forthcoming knee replacement today. All went quite well but I did get a bit upset when the nurse suggested that I come off the pred. before the operation. He shut up when I replied that that could not happen as I would go into adrenal shock and could die. He commented later that I knew a lot about my condition- that is nearly all thanks to this forum!
😳 I was told I need to be 15.0 or less, months ago by Rheumy, I got down to 13.5. Good for you!!!!! I've been told some weird things since I've been here... like I don't need to take the Pred because they are giving my hydrocortisone. I explained that was a "top up," and I certainly did need to be taking the Pred!!!!
Jobs worth ,bristling with her own importance from the sound of it .They either don't believe it exists or they are the worlds leading authority on badly collected information . Can't win can we .Hope the op went well ,She will be able to tell the next captive audience all about ''I have had patients with knee operations .............
Melissa, Glad to see you are back on form, if sore. Good luck with rehab, my only advice is don’t let the physio overstretch you. I ended up with trochanteric bursitis after my encounter. But, perhaps you can raise your leg higher than me when flat on you back 🥴
Good to hear the operation went well and you’ve retained your wonderful sense of the ridiculous. It’s the only way to survive idiots. Take care and keep smiling.
So glad to see you here, was afraid you'd defected to FB. Yes, not being able to move can be normal, but you will be pushed enough by physios so you will move whether you want to or not. 😊😊😍
So glad to hear you’re back on form girl...! Been thinking about you. My nurse daughter would have a fit if I told her about your experience. She’s a paediatric nurse and as far as she is concerned the nurses are the patients advocate, not their know-it-all interrogator... I hope your recovery is speedy... x
Is she still able to walk? Or did you ask if she would like to walk a mile in your shoes and offer to damage her knee as you can simulate PMRGCA Prednisolone symptoms. Oh no just thought no one can walk a mile in any shoes with all the disturbingly annoying pain you have to live with every day!!!
I hope you well on the road to New Kneeness and coping with you roller coaster Pred Meds xx
Hope the surgery went really well, despite Nurse Cratchit. I shall take away from your report the words: "Ohhhh and do YOU have PMR/GCA? OH! No... you don't. Okay than can you please, shut your gob!" hahahahaha. I think you mus't have some Mancunian mixed in with the Irish American Siciliano.
Hope she didn't look like that pic! Bet you glad it's over now. I wouldn't have been able to be as polite as you with all that daft questioning. Every time I have been in hospital, and I say GCA, they write PMR. Get well soon! x
So glad your op is over,wishing you a good recovery.Bet you have not recovered from Nurse questions,she sounds a real pain,and a know all to.Take care🌷🌷🌷x
Just pleased the op is now behind you , an wish you a speedy recovery 🐒
Glad your back on form Melissa & the worst is behind you, just the Physio now & it’s worth every exercise, the more you do the better recovery you’ll make.
Hi Melissa !! I first 'met' the horrendous Nurse Ratched lying in bed with Preclampsia before giving birth for the first time in 1975. it was a pretty crummy hospital in Auckland and they had 'no idea' about anything much actually - my first meal was salt-laden sausages and chips followed by 'choc pudding' !!! ??? I was given the book 'One flew Over ...' by a friend and was horrified but not surprised as I had worked for a year in a psych hospital as a trainee nurse - it was 'archaic' and cruel I thought and had to get out after witnessing some terrible stuff !! Anyway I still have strong associations of the book and film with both those then awful institutions neither of which were infused with any intelligence or 'medical efficiency' let alone compassion or empathy - so in retrospect maybe some things have improved in some places - despite 'over-zealous nurses' such as yours !!
Very pleased you are so 'bright' so quickly and hope your rehab starts off really well and isn't too tough !!
Ah yes - frustrating. Just as frustrating as people who "never heard of that"!!!!! Which in my case is just about most - they look at me like I'm making it up!!! I feel like apologising for it! Hope the op went ok and you feel the benefit soon. x
We’ll always be in this position won’t we where someone who hasn’t got PMRGCA knows exactly what to do!! And added to that don’t we look well!! The main thing is you’ve got through the op successfully. One down two to go!! Best wishes for your speedy, thorough recovery. Xx
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Flare of GCA after 4 yrs on Pred ?
IAM having a moan,so I'm sorry.
No....
GCA/PMR and spa treatments
Constipation and bloated
