Support for Tillytop

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Comments

  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Thank you so much for your kind words Lululu. I really do appreciate your kindness in starting this thread for me.

    Love Tillyxxx
  • mig
    mig Member Posts: 7,154
    edited 30. Nov -1, 00:00
    Hi Tilly,hope things are still going well,hope you have a comfortable bank holiday.(((()))) Mig
  • phoenixoxo
    phoenixoxo Member Posts: 625
    edited 30. Nov -1, 00:00
    Hi Tilly,

    Apologies for having only just read up on this thread! I hope you're coping well today and enjoying the prospect of the long weekend :)

    Best wishes,
    Phoebe
    PsA (psoriatic arthritis) and other things since 1990. Happy to help when I can :-)
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Thank you Mig and Pheobe.

    "Head-wise" I am coping much better today thanks which does make it easier to deal with the physical stuff too.

    Hope you both enjoy the long weekend - and that we don't have too much rain!

    Thanks again,

    Love Tillyxxx
  • Heather65
    Heather65 Member Posts: 262
    edited 30. Nov -1, 00:00
    enjoy the weekend hope its a good one x
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    hi Tilly
    Hope you have a lovely weekend mi dear :D
    e050.gifMe-Tony
    n035.gifRa-1996 -2013 RIP...
    k040.gif
    Cleo - 1996 to 2011. RIP
  • mig
    mig Member Posts: 7,154
    edited 30. Nov -1, 00:00
    Hi Tilly,Hope you had a good week-end,i really missed the forum while it was down,i will be glad when this cold wet weather has gone it plays havoic with my aches and pains.Mig
  • Numptydumpty
    Numptydumpty Member Posts: 6,417
    edited 30. Nov -1, 00:00
    Hi Tilly,
    I hope you're feeling well. The weather didn't lend itself to doing much over the bank holiday, so I just rested up, and pottered in the garden between showers. Actually, my pottering consists mainly of telling Humpty, what needs to be done, and how to do it!
    Oh well, he's used to it by now!
    Wishing you well,
    Numpty
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Thankyou Numpty, Mig, Tony and Heather for your posts.

    You are right that the weather was pretty dire over the weekend wasn't it? We managed a day out on Saturday which was lovely but the rest of the weekend was pretty much a lost cause :( health and weather wise. Hey ho. Onwards and downwards :roll:

    Hope you all managed to take some enjoyment from the long weekend despite the weather and the arthritisy stuff you all have going on.

    Thanks again for taking the time to post.

    Love Tillyxxx
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Morning Tilly. I hope things are as good as possible for you. I'm still thinking of you. ((()))
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • Numptydumpty
    Numptydumpty Member Posts: 6,417
    edited 30. Nov -1, 00:00
    Hi Tilly,
    I hope you're having a good day today.
    With fondest wishes,
    Numpty
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Hey Tilly hun, hoping your having a better day, and getting stronger. Sending you a big (((HUG))).
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Thank you so much for your continued support - I can't tell you how much I appreciate it. (I know I keep saying it but it's true!)

    It's not been a good week and I have been struggling hugely with the codeine (stomach problems) and/or lack of codeine (outrageous restless legs). I have been up pretty much all night for the past two nights because I have been trying to do without the codeine which has given the legs free rein. I have had restless legs syndrome (rls) on and off since I was about 8 and, it has been an irritation rather than a significant problem until the past few years. I hadn't realised how much the codeine was helping, because I wasn't taking it for the rls, until I cut back on the codeine. When it gets going it affects my arms as well as my legs and I am lying in bed literally flinging my arms and legs around every few seconds because that's the only way to get any kind of very temporary relief. Because I am, through necessity, sitting so much at the moment, it is uncomfortable during the day too, although nothing like so bad as during the night.

    Was getting really panicky because I am so desperate to be able to get to the hospital for my Rituximab next Weds and, without the codeine I wouldn't be able to sit for the 9 or so hours of the infusion due to the rls but with the codeine, I would be doubled up with stomach pain so unable to go anyway. So I bit the bullet and went to the doc this morning and he was FAB.

    He understood exactly what I was saying and has given me Oromorph to try to see if that helps me to sleep through the restless legs. He tells me that it is less likely to give me digestive problems than the codeine and is safe for me to use long term if needed.

    I also felt "brave"enough to ask his advice on my bp and rapid, irregular heart rate. Despite doubling my bp med twice recently (without consultation with my GP cos I couldn't face going :shock: although I did tell him when I had done it ) my bp is not dropping and the last time I had my Rituximab, they were thinking they would have to stop the infusions because my bp and pulse rate started high and kept going up and up. He doesn't want to up the bp med any more at the moment but he has agreed to prescribe a beta-blocker alongside to try to lower and regulate my heart rate. I have had this before and it worked within 48 hours so I am hoping for a good result. He said that normally he would not prescribe the beta blocker until he knew if the higher dose BP med was going to work but he understood my concerns about the Ritux infusions and said that, so long as I was prepared for the fact that the new med could cause as he put it " a catastrophic crash in bp" which would make me feel "very unwell" he was happy for me to try it. Yikes!

    This GP really does seem to understand RA and all its weird and wonderful non-joint manifestations. He told me today that, in his few, RA was one of the most complicated diseases there was because it has the potential to affect so many parts of the body. And he added that "any gp who doesn't recognise that, doesn't know what they are talking about". And that gave me a real confidence boost. He finished the conversation by saying "remember we're here if you need us" which I thought was really kind. So a good appt and I am feeling much more positive about things for the moment.

    Thanks again all - and thanks to anyone who has got to the end of my ramblings without falling asleep :D Maybe I should market myself as a drug-free cure for insomnia :lol:

    Love Tillyxxx
  • Numptydumpty
    Numptydumpty Member Posts: 6,417
    edited 30. Nov -1, 00:00
    Hi Tilly, your GP sounds wonderful, kind and understanding. Do you think you could lend him out ?
    Humpty has had high BP for years. Recently he has lost 2 stones! I am on the same "diet" as him, and I have lost 4lbs. He also runs and exercises on a x trainer, which of course I can't do. Although he is still taking various meds for it , his BP is now normal. It just goes to show the power of exercise. Something, unfortunately, we can't participate in.
    I really hope your BP settles enough for your infusion. I'll keep every thing crossed that will cross, for you.
    Thinking of you,
    Numpty
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Morning gorgeous, I am so glad to hear you had a good GP's apppointment, it makes such a difference doesn't it? I hope the oromorph helps you to get some decent rest and that your rituximab infusions can go ahead. My fingers are crossed. ((())) DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Thanks so much Numpty and DD for your posts.

    Thanks to the Oromorph I had no problems with the legs last night and I slept for nearly 5 hours :D which was only marginally spoiled by the fact that, because I hadn't moved for a while, I woke up at 5am with a stonking neck-related headache which meant I had to get out of bed and sit up :roll: (cos that's the only thing which helps).

    Yes, my (fairly recently) discovered GP IS wonderful - and since I started going to him, for the first time in 16 years I am beginning to realise that I have someone helping me to fight my corner in terms of the RA. You did make me laugh about lending him out though Numpty :lol:

    As for my BP - well I knew the Atenolol worked quickly from before but I took my first tablet last night and by this morning my bp was lower than it has been for months and my pulse is slow and regular - so much more comfortable. Hope it doesn't go too much lower tho' - can't be doing with falling over :shock:

    Well done to Humpty for losing all that weight - and well done you Numpty for losing weight too (but I agree that it is frustrating and much more difficult to lose weight when our ability to exercise is limited).

    So all in all, unless anything else unforseen happens (which based on my track record recently, is perfectly possible :roll: ) I think all should be well for the infusion on Weds.

    Thanks again.

    Love Tillyxxx
  • Heather65
    Heather65 Member Posts: 262
    edited 30. Nov -1, 00:00
    hi tilly glad you had a good appointment at the docs it makes a difference when they listen to you hopefully it wil help and i know what its like not getting alot of sleep
  • PatriciaH
    PatriciaH Member Posts: 77
    edited 30. Nov -1, 00:00
    Ah Tilly how fab that you have found a caring, supportive GP. You so deserve it :)

    Just thought I would let you know that I have been taking Oramorph for a couple of years. It has been the ONLY thing to help with my pain and enable me to sleep through a good seven hours!!! - without any noticeable side effects. I hope it will be the same for you - sounds like it anyway up to now.

    Take care

    Patricia x
  • bubbadog
    bubbadog Member Posts: 5,544
    edited 30. Nov -1, 00:00
    Hi there Tilly my sweet! Glad you have found a GP who understands you and fights your corner, it is great when it happens. That's why I stick with mine and refuse to go to see anyone else!! Sorry you suffered with a horrible headache, I had a nasty migraine on Wednesday so I understand how you felt! Hope you have a good weekend and keep getting stronger! Lots of big ((((HUGS)))) from Bubba & I

    P.S I also missed the site when it was down! it was horrible not getting my AC fix , glad it's up and running again! :)
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Hello Heather, Patricia and Bubbadog and thanks for your posts and your encouragement on the Oromorph. Worked really well again last night and managed nearly 6 hours sleep! Hurrah for Oromorph! :D

    Bubbadog - you are so right about the difference it makes when you find a good GP. Glad you have a good one too. Sorry about your migraine on Weds, hope you have recovered now. Mine really was just a bad headache but I do have migraines from time to time and I know just how debilitating they can be.

    Thanks again all for your continued support - don't know what I would have done without you all over the past few weeks.

    Hope you all have sunshine where you are today - it is lovely and sunny here today and we are going out for lunch in a little while hopefully (stomach permitting :roll: ).

    Love Tillyxxx
  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Morning Tilly. I hope the lunch was good and the oromorph helps. (())
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • tillytop
    tillytop Member Posts: 3,460
    edited 30. Nov -1, 00:00
    Thanks Sticky. Lunch WAS good thanks :lol: and the Oromorph is helping hugely - I have slept for about 7 hours the last two nights which is unbelievable! :lol:

    Was due my Rituximab today but (minor) sore throat has stopped play :roll: which is so frustrating, given that I have been waiting for this delayed infusion for 6 months and have been doing everything I possibly can over the past few weeks to get me to the position where I could have it. It is now going to be on 29th May, so only a couple of weeks more to wait.

    And on the plus side - my husband has a week off work this week so instead of spending half of it at the hospital, we can now actually have some proper "holiday days" weather and health permitting. :D Gloriously sunny today, so we are going out to a local open garden for lunch and a wander. :D

    Tillyxxx