Warning; This blog post contains some strong language, because I am mad as hell and I'm not going to take it anymore. Well... actually, I probably am going to take it, but I may cry!
If you are easily offended by expletives, perhaps you want to think twice before clicking on the link above.
Oh, Melissa, poor you. You are entitled to have a pity party after what you have been through. But you WILL pick yourself up, you are such a strong person. I am sending lots of love and virtual hugs. I feel for you, and let's hope you get it sorted sooner rather than later xx
Thank you JanboC.... I appreciate it! It really is a roller coaster, isn't it! We're up, we're down, we're all over the place! I will pick myself up... but for now, I'm going with "Life Sucks!" 🤨
Thanks you Primarosa, Yes... "This is a test... it is only a test... of the NHS emergency medical system.... Had this been a real emergency, you would have been treated!" 🤣
When I was on higher doses of pred, I cried at the drop of a hat. Now at 5, I find I can roll with the punches a lot better (you sure have had a lot of punches lately though!). 3 days ago I broke yet another tooth, 2 days ago my washing machine broke (just got back from the laundromat....somewhere I haven't been in years) and I had to get up at 4:00 am to drive my visitor from Australia to the airport after a 3 week visit. Wasn't sure I would be able to handle 3 weeks but I did, and it was fun, though tiring. Things will get better Melissa. Some days it is hard to see the light at the end of the tunnel, but keep looking.
Poor poor you. I know all about doctors and competing opinions/agendas but am too fatigued to post about that. I can only, with trepidation, offer some ideas you have probably already considered. I had 2 knee replacements on 10 mg pred and the dose was upped considerably during the surgery period. My orthopedic surgeon in the U. S. was more interested in the possibility of cortisone shock than infection. He also drained my knees several times in the year before surgery, as did my then rheumatogist. Any chance you can pin down at least one of your doctors for the drainage? This is of course after common sense returns and your lively, eloquent rants are over!!
Thank you Joaclp, Yes Rheumy was supposed to do drainage Wednesday, but said Orto would be pissy about it. I see Rheumy on NHS, I see Ortho privately... next step, back to Ortho for £££ drainage! Thanks you for suggestions and thanks for reading rant!
Oh Melissa what a bunch of 🤬 Have a good cry, God knows you have plenty of reason for now. Just can't imagine how long this will drag on for you. Sending you virtual hugs 🌺 xx
Oh bugger - what an awful situation. I know what you mean - sometimes you've just had enough and you feel you can't cope any more. Tomorrow's another day; onwards & upwards; we shall overcome... 🎶🎵 xx
Hi Melissa,I'm so sorry to hear that😤😭it is definitely a rollercoaster ride.You must be feeling exhausted😲.What I don't understand is I thought when people with pmr/GCA have surgery they need to increase the pred??
Thank you GG, I am back on track today! Will finish here and then on the phone to the Ortho's secretary! I'll pay him to do drain and steroid shot... and lets get a tentative surgery date in the books! Damnit!
Can’t these 3 doctors talk to each other and figure out who can help you? Send copies of a letter explaining the situation to all three? Go private? You’ve probably already thought of these ideas and are sick of trying to fix it.
I hope one of these so-called physicians remember their Hippocratic Oath sometime soon and solve this for you.
Thank you Mstiles, I appreciate it! I am "private" with the Ortho.... which is why Rheumy was reluctant to touch knee. She said he is "funny," about that! I used to be "private" with Rheumy, but now see her on NHS. Thank you for trying to fix. xx
Why with all that we have wrong with us, do we then have to do battles with those that should be treating us!.....disgusting......I wish I could make a suggestion that would help....except you are a fighter, and will get the strength from somewhere, when your feeling low passes, which it will......
Ring a Secretary to one of the a...h...s, they might suggest something, make yourself a pest!.......they get their own way it seems......
I am, I am....and the answer to another posting on here....their ego`s are too bloody big to talk to each other!....which leaves us in a bloody mess...oh, I must stop swearing, blood pressure up again!....
Oh poor Melissa, I do feel for you and send virtual hugs. What a wretched circle of pain you have. Have you come across a book called 'The Secret' by Rhonda Byrne? It is available from Amazon and might help you to break out of the circle of negativity which life seems to have wrapped you in. Even the worst pain feels worse when one gets sucked into it! Take care of yourself and think up a few treats to liven you up a bit. I wish I could wave a magic wand and make it all go away for you!!!
Thank you Stellafmdm! Yes!!! I have that book someplace... I must dig it out! Thanks for reminder... I am apparently attracting all this 💩.
Brilliantly expressed Melissa. What a pisser!! There are 3 heads that need knocking together to sort out the best solution! Really sorry that you are having all this crap. ATB
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Cheers PD! Yes and I'd LOVE to do the knocking! Hahahahahaha
Oh Melissa, how sh$&tty! Life sucks on occasion, and I feel your pain (figuratively and physically...my right knee is f#%cked too). No wonder you are so down, hopes for pain relief dashed, delays, and the challenge of trying to get 3 physicians on the same page. Let the tears flow hon, as long as need be. Must seem awfully overwhelming. Try not to put too much pressure on yourself trying to meet all of the dr’s demands.
Be proud of your pred reduction thus far, you will get there eventually. Keep doin what you’re doing.
Every Ortho surgeon is different and has different requirements. One of my past posts generated lots of responses from people who were at various levels of pred during surgery. In emergencies they operate on people who are at higher levels, and often they do a high steroid flush after surgery to replicate our body’s natural response. Hopefully you can get an appt soon with your Ortho to get that knee drained while you wait. He may even give you a Medrol injection which may give you relief up to three months while waiting to have the surgery.
My Ortho just gave me my first steroid injection in my right knee (we are trying to hold off surgery), and he gave me the same recommendations as my GP, lower my weight and pred dose for the best outcome. No talk of numbers, just goals to work towards. He never did communicate with my Rheumy about my pred levels, instead he discussed it with me directly and shares info with my GP. That’s good because I dumped my Rheumy as she was useless and not working with my other two Dr’s as a team member (in fact she slammed my Ortho).
Take some time, as long as you need, to get though this stage of your journey. And when you feel ready, address your Catch 22 in a manageable way. We are hear to listen, support, comfort. Hope that throwing in some advice is ok, but I totally understand if that’s not what you want/need. If so, I apologize. Take good care and please do let us know how you are doing along the way.
Awe... thank you PMRCanada! I am feeling much better today and YES, I am thrilled with the fact that PMR & GCA seem under control and Pred intake is down to 20mg... VERY HAPPY indeed! Good on you losing weight and reducing pred... I will ask about Medrol injection, as 3 months would just about get me to where I need to be. Yes, my Ortho never did communicate with my Rheumy, since May when I saw him! Why cant these people TALK???? Thank you for listening and for your empathy and advice... it's more than OK!!! I hope your journey continues to be successful!
Thank SJ. Sorry I spoiled you PP.... Mine is over now; the Piñata has been broken to bits and all the bitter candy is gone. All that is left is the tequila. ; )
Long poles up your back alley...oh, how rude!, nearly as bad as my friend who worked for the gas board, always getting calls from people saying there was a smell up their back passage!!…
My husband arranged for this work and I didn’t want to be surrounded by scaffolding. I think a hex is a sort of spell or curse. They just couldn’t do it. Ha ha ha.
At first, I was just empathising with the isolating hell of the limited walks.
Especially , as my balance and dizzy spells are so bad at the moment that I had to be walked up the village like a drunken vagrant by my daughter to see my friend today.
But the the appointment nonsense. Argh!!
It beggars belief.
If I was close by I would have brought my sledgehammer and bashed a few home truths into them.
For a start, why couldn't you have the injection for the pain if it couldn't be drained.
Two, why didn't the Rheumy contact the Orthodo surgeon prior to your appointment and consult as to when you would be right for surgery, and if it was months on from the time you could have your knee drained before surgery you could have had it done then.
Talking together why do they act like it's as hard as brain surgery.
Three, if you look at Daisychains recent posts on her latest hospital horrors she has been told and others on the forum agree that they have been recommended to increase the Pred before surgery or stressful procedures to prevent issues such as pain flares and changes in BP.
Now your Rheumy has told you , and others have had the same advice , that you should be on little or no Pred before surgery because of infections. So what the heck is right!!
Perhaps your other consoling respondents can thrash this out and give us the right answer. Because I am lost and confused , and for once the brain fog is not responsible!
If it turns out you have to taper and it could take so long perhaps you can go for a sequel ," Catch 22: the solution", and request via an appointment with one of your evil torturers for your knee to be drained if their Pred/Surgery solution will take more than six months, then at least one of us will be able to walk more than half a mile without looking like a drugged up Weeble under constant supervision ( remember the 70's toys that wobbled but didnt fall down, unless you were like me and had one that laid on the floor with a permenant list, a hint of things to come I hear you say).
When it comes to the crying , you boohoo your lungs out matey, many of us have been there, constant pain, sleep deprivation and a feeling of helplessness under the weight of medical ignorance and disrespect , it feels like we are often living the life of prisoners of war being tortured for information that we do not have.
If we did not cry , we would probably use our last drops of adrenaline to act with the strength of a mother with a trapped child , and kick the whole medical kit and kaboodle out of the window. Let those tears flow now, ease the pain if they will not , regain that strength and fight another day.
I wish you luck with it and hope to hear better news soon , or I can always DPS you that sledgehammer!
Thank Blearyeyed, sorry to hear you are plagued with dizziness and balance issues... that sucks! Yeah, Rheumy wouldn't do anything to knee as she said Ortho would not be happy! Ortho was supposed to contact Rheumy since I saw him in May, but that never happend.. not sure why. I found this this morning but need to do more research perioperativemedicinejourna...
Thank you for the HUGS and the offer of the sledgehammer... I'll let you know! xx
Yes, it's a combination of wobbling and blurred vision causing some very unusual clothing choices to come out of my wardrobe!
If I dress appropriately next Tuesday I could also make the perfect psychopathic Halloween zombie with very little training required, perhaps that is one of the silver linings of PMR!?
Now where's that Michael Jackson lookalike I'm hearing the gentle sounds of 'Thriller' playing through my ears again, or is that just a rare form of spooky tinnitus??
Oh, you are all the best pain relief, so much so I have even included you, Mamici and rimmy in a Halloween inspired thank you to all you people in the community that help me get through the day. Thanks SJ , and see you at flashing party!
You are right - sometimes 'life' does truly 'suck' .... I am at your sad 'pity party' huddled in a corner with a squashed paper hat and an alarmingly small serve of inferior cake - WHAT could be worse !!?? Well of course the situation you are in - but all jokes aside - it's just not funny or 'fun'. So I wont try to cheer you up - but I still can at least 'predict' things will not always be as horrid as they are and feel at the moment ... you 'poor wee thing'.
Rimmy, I LOVE the image.... it is indeed quite pitiful! You, "huddled in a corner with a squashed paper hat and an alarmingly small serve of inferior cake!" You're the best guest, as you came fully prepared to embrace the theme of my sad little soirée. ...and you are right, today is a better day and I feel stronger! Many thanks!
Please come round to my house, bring Mamici and your bashed up hat , throw that suspiciously small piece of cake away.
I will iron your hats , serve giant portions of baked goods that are seriously no good and we be victorious over our medically induced pity by dunking our doctors heads in the apple bobbing barrel until their ankles wiggle for own amusement.
Big Hugs , your will never be a crumple hatted wallflower!!
Gee whizz - THANKS!! now Melissa and I know where to come when all else 'fails' and the very thought of dunking doctors is SO 'exciting' - can we dip them in toffee as well !!??
Yes - I'll throw that crumpled party hat away and get out of my corner - and knowing Melissa she'll do the same - as soon as she can !!!
Big hugs back to YOU 'Blearyeyed' - which is something I feel like a LOT of the time myself ...
Don't know about the toffee, but we have a Halloween party game over her at what my friends lovingly call , " The Asylum", were we dunk for marshmallows in golden syrup and then rice crispies , a sort of sugar overloaded form of tar and feathering.
Perhaps we could give them a full body version of that instead!
Fun filled , Halloween inspired Doctor torturing, perhaps it could become a new and rather more effective form of treatment on the NHS??
Then , we can get Sheffield Jane too , become a flash mob of PMR induced wobble zombies and put the spooky tinnitus version of 'Thriller' ringing in my head to really good use.
Good times!! Hugs right back at you sweetie have a great day!
Sounds great SJ would be into that with M and I - for sure - and there are several 'other radicals here who'd LOVE to be part of a flash mob !! ... only except I think I'd eat the ingredients before we even got to the doctors - now I just have to get your imaginative 'imagery' out of my head ...
I have had so much fun organising our Halloween party this morning I have even been inspired to write a thank you post on how a dose of our banter does me so much good. And of course, as well as a little Halloween themed madness you get a mention.
See you at the party and keep the toffee good and hot !
Yesterday I had lunch with a fellow senior, one, believe it or not, older than me. Very bad knee problem, said it was so bad he could not stand. He then told me that he uses a TENS machine almost all day long and it helps "a lot". He puts one electrode on each side of the knee and Voila! He had it on in the restaurant and I could not see it it was very small. He also was having Doctor problems and said this was a stop-gap "until they get their heads out of their a----. Maybe this could help you get through to the next appointment.
Oh my gosh you couldn’t make this up. Sounds like a head banging together is needed by your consultants. Why can’t they climb down from their hobby horses and help for a change. You have my sympathy have a good wallow in your pity party. I’ve been having my little pity party for the last two months with sciatic pain it’s hard to see the light at the end of the tunnel when nothing helps the pain and you can’t even go for a walk. So sorry for you. Sending a big virtual hug 🤗 you can beat this.
I know right... sometime I worry that material for my rants will dry up and I won't have anything to RANT about... not a freakin chance!!!!! Thank you CT-5012, appreciate the hugs and kind words.
Dear Mamici1, I really feel for you and sending you so much love and strong arms as I can. Its good to rant and swear and allow yourself to shout at the world because it is so **** ing unfair. You have and are going through so much. At least ton here you are supported and loved and people understand and we will all join your party because we all want to throw one at some time or other!!! Yes, post menopausal was easier than this.
The doctors have no idea what you do through on a daily basis and how we built up to these apts. i had my last one cancelled, 12 hours before hand - i cried and then at the apt no report on my CT or MRI and a doctor aged 12 who said I was too young to have GCA and i wasnt typical. In my slow mo thought bubble I punched him but then I realise I was crying with fatigue and frustration and being told another 10 mg drop... which aint going to happen.
Life sure does suck hon, and take your time to allow yourself to 'crack on'. Some days are okay to be a duvet I have GCA PMR days.... we are strong but sometimes bodies need to stay down for a few days. Huge huge hugs and understanding. xx
Thanks you FoD, Yes I do appreciate that I have a ton of people who listen, understand and always empathise... We are all really lucky in that regard!!!! Yup, I am familiar with the PMG/GCA Days... me, a duvet, my pillow, the couch, all melding into one indistinguishable mess. Some of my favourite days, actually!!!! Many thanks. xx
Oh boy ,so sorry ,I know what you mean ,I have been passed from GP to Physio to Rheumy to Otrho back to GP ....Ect for 2 years with a massive rotor cuff tear ,( I drove for a living not good ) Their words not mine .I have finally got an appt with a consultant ,at last .I await with bated breath .I am at last off the steroids ,so I have pipped that at the post .I don't have half the problems you have and I feel like the strangled screech in my throat is going to get out and embarraas me one day ! Hang on in there and get what you need ,grit your already gritted teeth and Look into PMRs . suggestion of Medrol injection.I dont know anything about that but if it gets you through some of the pain while you wait for the treatment you need find out about it .I am not surprised you are in tears ,I would be too . I hope it all comes together soon for you ,Keep your chin up and I hope it gets sorted out soon .
🤣 Okay that made me laugh out loud!!!! ... and why didn't I think of that???
Thank you, I needed a good laugh! xxx
Oh Melissa 😢
😡🤬😡
When do you see Ortho Guy again as really he should be the one giving you the Cortisone Injection & l’d have thought there’s no valid reason not to treat the knee until your Surgery?
This ‘I don’t want you on steroids, when you have surgery’ is just another way of keeping us off their Waiting Lists, along with ‘you need to stop smoking’ & ‘lose three stone!’
Try & get a sooner appointment with Ortho Guy if possible.
Meanwhile, lots of hugs across the miles 🤗😘🌺
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Hi Mrs Nails, How is that gorgeous grandbaby??? I am calling the Ortho's secretary TODAY! I went to Rheumy because GP said to go to Rheumy... (and I see her on NHS) I see Ortho privately so he will charge ££££ for drain and steroid injection, but at this point, I will PAY! Thanks for hugs... they helped!
I don't know what to say, except to say I understand your pain. Tears are good, they help you to release the pent up emotions. However if you are like me and anger makes you cry, its difficult to get things across and appear rational with streaming tears and a snotty nose I really do feel for you. Sending love and hugs xxx
Yes... I was angry but knew I could not convey the anger (both times, it's happened) so I cried! ...and absolutely, a snotty nose is never a way to be taken seriously! Thank you for the hugs and love! xxx
Mm ... can I sympathise, of course I can. Might I just say Mel, walking on a known bad joint is not the best way to satisfy you Determination. Be persistant at the Medical people, be a nuisance. Ask for a second opinion, you have a right in all aspects. I have a daughter who went through something similar for 18yrs, eventually she had spinal surgery, NO it wasn`t all in her mind (pain) ... she really was in dire straights. Be a pain back at them, dig your heels in, ask for a second opinion at every refusal.
Ha! No, Oldman, it is NOT! I have just talked to the BUPA and the Orto does do knee drainage and steroid injection... and BUPA will pay! So, my bad not asking that question earlier! I hope your daughter's spine is all okay now!!!! That must have been HELL! 18 YEARS! 😱
The spine is fixed, the side effects of walking twisted have affected her hips. I`ve told her to sue all those who have their name on her file. Not much chance of her taking any notice.
If you want to sue go for no win no fee lawyers, but beware you can still be landed with legal fees if you lose. It will also probably take at least a couple of years and quite a lot of your daughter's time.
I had cortisone injection in my right hip in December 17 from GP.....relief. X-ray in January 18 showed I needed 2 hip replacement. Surgeon in Feb said yes urgent need, reduce Pred from 9 to 5 mg per day prior to May surgery. I did it by constant DSNS method. Reason given to me too was risk of infection ( thinks.....no matter what dose you are on do they ask you to reduce ). Op on 14th May followed by serious AF 2 days later and low oxygen levels.....extra time in hospital to settle down, but new hip joint fine. 4 weeks into recovery, start to walk with physio consult.......becomes obvious left hip will not cope. Back on crutches, wheelchair etc till given 2nd hip op on 8th October....... two and half weeks into recovery and can only stagger on 2 crutches etc. Pred reduction has continued now at 2.5 mg Pred.
Frustrated this week as NHS have designated Physio appointment as routine and have to wait till end of December. If I am going to damage my young hips after expensive contracted to private provider operations, 10 weeks after op will be too late. Have requested physio be reclassified as urgent......we’ll see!
I cry a lot too. Frustration! Boredom! Pain! Meds! Which is responsible?
Keep smiling, and entertaining us with your blog.......tho I never, ever swear.🌝🥀. Valerie
I think orthos would like zero pred as that is totally risk free as far as they are concerned. I am reading a book about hospitals at the moment and the guy writing it (orbs and gynae) obviously does not think much of orthopaedic surgeons, he says 99% are bone crunching Neanderthals and that for their signature they stick their hand into a bowl of ink and stick their hand print on the paper! He did say they were useful for the rugby team though.
Wow, and I thought I had problems!!! My goodness what a mess! It's almost a Years I developed your first cortisone injection.... I am so sorry. I hope you get soreted SOON!
WTF mamici- hugs and sympathy go without saying - but get a grip!!!
Mobility -crucial. Get a souped up trendy mobility scooter - you can pick up second hand ones quite cheap - and you iknow one careful lady driver - take your frustrations out by driving it at speed wherever you're supposed not to. And also if you haven't already get your hormones tested - heaven only knows what these preds do to the rest of the endocrine system - and if you don't want to wait get them done privately and when you drive into your GP's office on said scooter and challenge him to find someone who can and brandish any wayward results in his face and tell him to get them sorted. Of course to look the part you may need a Lewis Hamilton crash helmet, leathers and your bright red lipstick,................and a big box of tissues!
Remember ..........We are the Champions my Friends!! We are the Champions
PS
My sister's in a similar catch - she needs a new hip - said hip let her down and she fell in London and dislocated her shoulder. a consultant who hadn't examined her countermanded the overheard comment of a more junior colleague suggesting an ultrasound. Oh she doesn't need that - 8 weeks later yes she did. Result - ligament snapped - you need an op -be about 8 weeks - and if keyhole doesn't work we'll have to book you in for open surgery- another wait - hip man says he can't do the hip as she won't be able to use crutches!
So sorry to hear of your so frustrating, annoying and painful visit. I know Orthos
Worry about bone infection but they do operate on people on steroids.
I recently was on 10mg Pred. And had my totally detached rotator cuff reattached. The anaesthetist gave me extra Pred. Both before and after op. And I had no problems.
You stand up for yourself and feel us all behind you keeping you strong.
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