Hi from Susi M

Options
SusiM
SusiM Member Posts: 87
edited 31. Aug 2019, 03:37 in Living with arthritis
Hi everyone

Just wanted to say hello and hope everyone is doing as well as can be despite the creaky ol' joints and bones. I also wanted to give everyone a BIG thankyou for helping me in the early days of my diagnosis when l felt so afraid and overwhelmed by it all (special thanks to SW and DD for patiently responding to my countless posts and reassuring me that l wouldnt be swallowed up by the big black arthritis cloud :D

Im still kickin on and nothings new on the other aspects of my illness except that lm getting used to being sick and not having answers :? My arthritis is under some control but lm still on a small dose of pred until the plaquenil kicks in and lm hoping its enough to support me so l can avoid the dreaded mxt.

After a couple more rheumatologist appointments lve realised that l am a guinea pig for the doctors in training. This has been a bit disappointing that l dont have continuity of care and that every time l go they suggest something different to the last person. Ive realised l am to expect this if l continue in the public system. I may have to bite the bullet on this one and pay a private rheumy if l want any decent sort of care.

I hope youre all doing well as can be and l thankyou soooo much for seeing me through some of my darkest days and doing the same for so many others that come here looking for support.

Much love t4591

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Options
    Susi! How very bonza it is to hear from you, genuinely you have not been far from my thoughts. I remain in the arthritic quagmire caused by the change of meds and summer (always a pig of a season for me) but apart from that life creaks on as it always does.

    I am sorry that you are struggling to find continuity of care, my hospital is a teaching one so I am used to freshly-hatched baby rheumas sitting in on my apoointments but not with them actually 'dealing' with me. That cannot be helping you in finding your arthritic feet but we will always be here, don't forget that. As for whatever we did when we were doing it it was our pleasure: Sticky and me are jaded old creakers who have been around the arthritis block more times than one might think possible. We are not unsympathetic but are tried and tested members of the 'roll your sleeves up and get on with it' brigade because we have always had to. I will always maintain that coming at this from a healthy background is far, far harder. I wish you as well as possible and please keep in touch. ((( ))) DD

    PS Never try to teach a pig to sing. It wastes your time and annoys the pig. :wink:
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Kitty
    Kitty Member Posts: 3,583
    edited 30. Nov -1, 00:00
    Options
    Hi Susi, I quite enjoy being a guinea pig for doctors in training. I've 'assisted' year 1, 2 and 3 trainee doctors by correcting their mistakes. My knowledge of my many and various conditions is far superior to theirs (for now) and I hope when they finish their training they will remember me and my answers to their queries for their entire professional life. Big headed? You bet. :wink:

    "Women and cats will do as they please, and men and dogs should relax and get used to the idea." Robert A Heinlein

  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
    Options
    Hey, lovely to see you again though I'm sorry to hear little has changed. Yes, lack of continuity isn't ideal but at least you'll get different opinions one of which, one day might prove useful :roll:

    "Jaded old creakers" :shock: Who on earth is DD on about :lol: Yup, alas, she's all too right.

    How long has it been now with the hydroxy? I admire your patience. I hope something happens soon for the best.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • SusiM
    SusiM Member Posts: 87
    edited 30. Nov -1, 00:00
    Options
    dreamdaisy wrote:
    Susi! How very bonza it is to hear from you, genuinely you have not been far from my thoughts. I remain in the arthritic quagmire caused by the change of meds and summer (always a pig of a season for me) but apart from that life creaks on as it always does.

    I am sorry that you are struggling to find continuity of care, my hospital is a teaching one so I am used to freshly-hatched baby rheumas sitting in on my apoointments but not with them actually 'dealing' with me. That cannot be helping you in finding your arthritic feet but we will always be here, don't forget that. As for whatever we did when we were doing it it was our pleasure: Sticky and me are jaded old creakers who have been around the arthritis block more times than one might think possible. We are not unsympathetic but are tried and tested members of the 'roll your sleeves up and get on with it' brigade because we have always had to. I will always maintain that coming at this from a healthy background is far, far harder. I wish you as well as possible and please keep in touch. ((( ))) DD

    PS Never try to teach a pig to sing. It wastes your time and annoys the pig. :wink:

    DD so lovely to hear back from you too darl! Sorry to hear the arthritis is playing up on you but as you guys taught me " what's new"? Looking back on things yours and SWs "get on with it" attitude was exactly what l needed at the time. It helped me not to wallow and showed me what people who were toughing it out looked like. I've now accepted my arthritic lot. The other stuff is a bit harder to accept because l just kinda WANT ANSWERS! :roll:
  • SusiM
    SusiM Member Posts: 87
    edited 30. Nov -1, 00:00
    Options
    kathleenT wrote:
    Hi Susi, I quite enjoy being a guinea pig for doctors in training. I've 'assisted' year 1, 2 and 3 trainee doctors by correcting their mistakes. My knowledge of my many and various conditions is far superior to theirs (for now) and I hope when they finish their training they will remember me and my answers to their queries for their entire professional life. Big headed? You bet. :wink:

    Good for you! Must feel good to tell a doctor how to do their job :D
    My problem is l can't tell if they're making a mistake or not. Although they did fail to tell me that my platelets and neutrophils are significantly low (whatever on earth they are)
  • SusiM
    SusiM Member Posts: 87
    edited 30. Nov -1, 00:00
    Options
    Hey, lovely to see you again though I'm sorry to hear little has changed. Yes, lack of continuity isn't ideal but at least you'll get different opinions one of which, one day might prove useful :roll:

    "Jaded old creakers" :shock: Who on earth is DD on about :lol: Yup, alas, she's all too right.

    How long has it been now with the hydroxy? I admire your patience. I hope something happens soon for the best.

    Hi SW l wouldn't call you "jaded or old" but a "creaker" yes! I'm one too now. Especially the hips are giving me trouble at night, something every arthritic person has no doubt experienced. Waiting for the meds to work feels like forever. It's been 5 weeks back on the hydroxy. I had stopped it to see if it might have been the culprit for making me ill. Turned out it wasn't and l just wasted time. So fingers crossed this time!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Options
    Truth be told my arthritis never stops misbehaving; it's a year-round rancid box of heavily-disguised delights and what varies is my ability to cope, which has been at an all-time low for months. Truth be told I am very hacked off with all of it so am enjoying being a miserable old bat: that takes far less effort than my usual fake-cheerful. Arthritis has to rank as one of the best of life's rich travesties. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,730
    edited 30. Nov -1, 00:00
    Options
    SusiM wrote:
    So fingers crossed this time!


    Mine too :D
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright