HELLO EVERYONE, I'M BACK!

There are some on here who must have thought I fell off the edge of the planet it is so long since I've posted......there is a reason.....bare with me please.

First a brief history.....have battled RD for nearly 5 years now. Once diagnoised I was put on MTX which helped but due to complications (bad effect on the auld liver) so for the next 18 months I was on pain relief only until I got funding for Bio's. Once funding was approved I was on 4/5 different Bio's...some worked and then stopped, some didn't work at all and the rest I once again had complications with and had to stop using.

I'm also sero-negative so I had limits on what I could tolerate. When I had used up all the Bio's available to me I was put on a tiny dosage of just 5mg of Pred. I started this in the Spring of this year. Gradually over the months my pain grew less and less. I still got tired during the day but nothing like I used to be.

I had an appointment with the darling Dr Armstrong there on the 9th. To say he was amazed is to put it mildly. My Dr Armstrong is soooooooo laid back and lovely I often think he is on something too!!!! But no he isn't and his reaction to my lack of pain was heartwarming. "You have no inflammation in your joints Jean", he said in utter amazement, "I know, what's going on", I asked. "Well", said he, "I'm not entirely sure but on a rare occasion Bio's can start to work even after months of stopping with nothing happening. The Bio's that you were on have sort of 'kicked in' and you are experiencing the results", "Am I in remission", I asked "Well you certinally could be", he said and then I said "Well that's good enough for me" and I nearly danced out out of his office but not before I gave him a big hug and wished him and all of his a very Merry Christmas......(hope I got my almost forgotten primary school punctuation correct).

Now as with RD there is always something that just won't give up, just won't give you a minutes peace.....for me that is my jaw. I could jump over a row of houses I feel so well but for all that my jaw continues to deteriorate. I also had an appointment with my Dental Surgeon on Nov 28th. Had an X-Ray update and saw another lovely young Irish Dr who was so attentive and encouraging.....I seem to get them don't I?

Anyhow the X-Ray showed that there is now a hole where my jaw hing (did I spell that correctly? It just doesn't look right but you know what I mean don't you? I spelt keep with one e last week!) should be. My jaw locks every now and then and it makes so much noise grinding that when I eat or speak I think the person sitting beside me can hear it!!!! The gorgeous Dr Tom froze the side of my face and then put a syring into what is left of my jaw bone and zapped me with a double dose of steroid......boom, pain gone now there too, but no lovely warm crusty bread over the holidays, a small price to pay really, so, yippie!!!

I'm to see him again on the 6th or the 9th of Jan to see how things are. I have one more procedure to have done under anistetic (now I know that is spelt wrong but this site won't give me the correct spelling, sorry) and then I'm off to London (I live in Ireland) for a jaw replacement in the future. I have all this on the left side but I do have erosion on the right side too but it is not at a critical stage and long may it stay that way.

Now I have developed a thingie in my left lung too that is causing all sorts of problems but it is too close to C'mas and I'm not going to go into all that now. Surface to say that my much loved Dr Armstrong has it all in hand and is sending me to another "young, handsome Dr who will sort you out", he told me........could I be in safer hands? I very much doubt it!

This year I put up decorations, for the first time in years, with the help of my lively granddaughter Gemma who went into the attic to get them down for me. Of course she had an ulterior motive as she and her partner have just moved into their first home, money is tight and she was looking to see what was going spare! Sure we've all been there haven't we? I don't mind really as I have a life time of much loved decorations and I like the idea of them going to the next generation. I also have two brothers coming over from the States until the New Year too and I'm hosting a Buffet on New Years Eve for the family too.......so, I'm full of drugs and I'm feeling like I haven't felt in such a long time and I intend to make the most of it while it lasts.

To all of you who may not be feeling so well I do know how that feels, I'm not likely to ever forget it. I do hope that this coming year will bring you relief and that your life will be better. What is happening to me as I was told is rare but that doesn't stop me wishing the same outcome to you no matter where you are on this road.

To all my auld mates on here have a great C'mas and NY and I'll see everyone in 2016......jasus, 2016.......how did it happen so fast? Oh well sure what can you do? Enjoy as best you can. Love to all in NRAS too. XXXXXX

29 Replies

oldestnewest
  • You sound so positive! Thank you. And you'll have us queuing up for your lovely doctors! Seasons greetings!

  • Hello darlin......lovely to hear from you. Yes I am in great form, even if it is all drug induced! I don't care Cathie it's working and I'm enjoying every minute. I know there are some poor souls who are feeling the exact opposite and I have experienced their feelings so I do understand......you have listened to me moaning enough on here and for that I'm forever grateful, thank you auld friend. I hope you and you'rs have a great C'mas and a healthy NY too. XXXXX

  • One thing I've learned (if I needed to, I've never been a deferred gratification kind of person) is to go for the moment. I've had my new knee which seems good, waiting for the next. But in the meantime we're going for our first wee holiday in a small house we've built near Ullapool on the west coast. I think that'll be for Hogmanay. Lets hope the snow holds off - at least until we get there. Can even manage without electricity as we have a woodburner - but wont complain if there is some.

    I think its great to post positive things, we need to remember that things can improve. XX

  • Another one of my brothers in the State, I have four there, is. Supposed to be sailing to the Bahamas for C'mas......some might like the idea of that but I'm too much of a traditionalist for that. It should be cold and a bit of the white stuff falling out of the sky is lovely, not for everyone I know.

    That's great news about the knee, half way there then. "Ullapool on the west coast"......is that in Wales? The name itself sounds magical....have a great time no matter the weather and keep well. XX

  • Scotland! Ullapool is the place you take the ferry from to the Outer Hebrides, truly a magical place. We built this house because holidays were becoming a bit of an obstacle race what with the RA and the OA knees. We're lucky to be able to do this but have saved fiercely!

    To keep this thread a bit RA related and not to get told off - holidays are a problem with RA, the number of times we've been caught out with steep steps and tricky beds.

    ANyway I hope you get a bit of the white stuff for your holidays.

  • AWK, CUT MY TONGE OUT!!!!!! HOGMONAY.......WHAT WAS I THINKING???????????????????? MY BEAUTIFUL CELTIC COUSINS...........XXXXXXXXXXXXXX

  • I know and there we were waving at you from our highest mountain!! - and my partner is Irish anyway. XXX

  • Lovely to hear from you again, and wonderful that you are feeling so well. Hope you have a great Christmas and New Year. M xx

  • And I wish the same to you too luv. XX

  • See me waving back???????

  • I've really enjoyed sharing your joy with you Jean! Who would have known after saying for so long there's nothing left for you to try that they've done their job??? So so so pleased for you. Not so much about your jaw but as long as it's less painful & if a replacement is in the offing at least there's that to look forward to (!). ;)

    Gemma's ulterior motive made me smile but like you say it's nice they're going down the generations. I still have lots of my mum & dads & the odd one of nan's.... most don't see the light of day but I'd never bin them.

    I wish you a very Happy Christmas & a really enjoyable New Year with your family & above all continued remission. P (((xxx)))

  • Heels, great to hear from you, hope your well. I could open one of those year round C'mas shops I was in when visiting Edinburgh this time last year I have so many decorations. Why back in the day (2001) I found myself in Northern Europe during the winter (I spent the year backpacking around Europe at the ripe age of 51 and alone I might add......oh the good old days!) and I bought thee most beautiful tree decorations and didn't care what I paid for them. Out they all came and my Gemma and I 'ohhhhed and aweddddd' at the sight of everyone of them. She has them now and they have gone to a good home I'm sure.

    I appreciate you good wishes Heels and I pass mine on to you and yours. XXXX

  • Yeah lovely to see you here! Glad the joints are behaving and hope the jaw and lung thingies got sorted! Have s great Xmas and z fabulous Hogmanay xxx A xx

  • Awh thanks Allanh. I hope you are well too and that yu have a bit of a blast yourself over the holidays. XX

  • Wow I loved reading that ( not the bit about your jaw though obviously)

    I remember feeling so bad when you posted about having tried all the drugs and there was no more left to try......and look at you now! Fantastic news, and thanks for posting x

  • Beaches, hello, thanks for posting. You know I've been reading through all these lovely replies and I think I need to tone it down a bit!! I'm on such a high that I need to remember that not everyone is in the same place as I am. When I was bad sometimes I dodn't want to know about how well some people were, I was envious of them, natural I suppose.

    I know I have been very lucky too with the Rheumy Team that I have and that others have not been so lucky. Having said all that I think it's important for other sufferers to know that great things do happen, that these drugs we take can and do work for many. When I ran out of drugs I could take I could only see a very dark, painful, lonely future.....I was not in a nice place at all. But sometimes really good things can come out of all that are professionals do for us. This may not last and if it doesn't I'll have great memories from this time......that'll do me for now anyhow.

    I wish you all that you wish for yourself this festive season and for the new year to come. Take care darlin. XXXX

  • Well I love to hear good news stories.....the more the merrier! I'm obviously pleased for the person, but it also makes me feel more hopeful myself. I'm doing pretty well myself just now, but scared to say too much in case it doesn't last!

    Have a wonderful Christmas x

  • I know the feelin.....

  • What a fantastic positive post. Good luck to you Jean.

  • Stuart, hello big fella. Aren't I just wonderful......? XXX

  • You are indeed. Bouncing around like a leprechaun on steroids 😃

  • You have no idea of the image that puts in my head......sort of an Emerald clad Dolly Parton on speed!

  • Wonderful news Jean - apart from the jaw but at least you're obviously in great (and gorgeous) hands! Have a brilliant festive time! Twitchy🍸🍀🎄👍🏽XX

  • Toes, how are you luv thanks for getting in touch? Very well I hope, great to hear from you. I have to say I've been all misty eyed reading all of the replies......I'm Irish, we're an emotional lot! Yes I am doing so well that sometimes I find it hard to take in. When I'm able to throw back the duvet, sit up on the side of the bed, bend over and put on my house booties and move on to face the day with no pain......it is just unbelievable and a bit strange too.....its been years and you take on the pain as a part of you, you just expect it to be there and when suddenly it isn't it does throw you a bit at the beginning....well it did me anyhow!!

    In the new year I'll get my jaw and lung 'thingies' sorted. They get in the way of my pain free existence but will not hamper it in any way. This may not last, as I've been told to expect, but I'm walking inches off the ground at present and sure the present is all we have isn't it?

    Please have a great C'mas and NY.....I know it's not always easy but make it the best you can. Thanks again Toes for contacting me, it means a lot. XXXX

  • hi sorry I missed your post. I also live in Ireland. hope your jaw operation goes well and you had a super Christmas.

  • Hello there, sorry I missed your reply, C'mas and NYE have been hectic and I. Am only. Now getting some time to look at my iPad. What part of Ireland are you from? How long have you had the dreaded RD?. PM me if you like, I'd love to. Hear from you. Hope you had a great time over the holidays and that you were fit and healthy, all the best for 2016 too. Jean XX

  • Really sorry about the grammer in my post. My iPad is not doing what I want it to......I didn't realise it was so bad until I read it 'after' posting!

  • I wish you continued health. Thanks for the lovely post.

    Take care,

    Sue :)

  • Thanks Sue. I'm continuing to feel really well but am taking it a day at a time as I've been told that whatever is going on it is unlikely to last! I'm enjoying my new flexibility and freedom of movement. All around me are telling me I'm sort of 'manic' recently and over the holidays I think I may have been but I'm slowing down now that it's all over......like many, many other women I suppose at this time of the year. Anyhow Sue, thanks again for your reply and I wish you a happy and healthy 2016. XXXX

You may also like...