Bats is back

Hello dearfolk, I know I'm a disappearing-reappearing sort of bats, but there you have it. I found myself trying to read and respond to everything, and it was just...too much. I have decided I will do what I can and quit with the self-flagellation for what I can't.

Let's see, a brief summary, for those who know me and those who don't :) I have sero-negative erosive RD, and I've been diagnosed with fibromyalgia as well. Apparently it's a 2 for 1 sale and I'm not allowed to put RA back now that I have fibro. Who writes these rules???

I was responding really well to Humira, but I had to stop taking it due to a bout of pneumonia last year, and when I got back on it, it didn't work for me anymore. I'm on Simponi (gollumab preciousss, yessss) and it's working great. My Crp is normal, my joints aren't swollen, yaaaaay! The only catch is that I'm still in pain. A lot.

That's where the diagnosis of fibro comes in. When I told my gp he said very matter-of-factly that he would have given me that diagnosis six years ago, but it requires a rheumy to do it. So I still have joint pain, body pain, IBS pain, and it all sucks mud through a straw.

I'm Canadian, so I have access to medical marijuana, and I'm just trying to sort out dosing. pfff like I haven't been trying to do that for the past couple years.

On the plus side, I've had my home interview to get a guide dog, and will probably get a dog this year!!!! On the bad side, I'm still mostly blind. But on the plus side, I'm still inclined to joke about it, so all this other stuff must be survivable. Right? Right.

Azabat

aka Bats

18 Replies

oldestnewest
  • Well done, Bats. I've been preoccupied with moving house (after 22 years) so have been an infrequent visitor to the forum myself - so I didn't notice that you had been!

    Really sorry you are in so much pain. I'm not fully sorted either ; I fear I may be on steroids forever, as well as MTX injections and Rituximab infusions. Heigh ho! When I start to feel sorry for myself, I think of Aleppo.

    Too tired to write more now, but just wanted to connect, however briefly.

    Love jo x

  • Yeah bats !!! Happy new year !!!

  • Hi Bats--- glad you've touched Base again and updated us. Happy new year x😊

  • I knew of you but haven't messaged before. I am sorry that you got loaded. I think that we must have really annoyed someone sometime. I wouldn't wish this on my worst enemy. I was fine until I was 21, I grew into the whole pile: hay fever; asthma; IBS; allergies; anaphylaxis and then topped it all with RA. I hope that whosoever decided that we should have horridious diseases has finished with us all and nothing else is in the woodwork!

    Have a better New Year.

    Jacqui

  • Hello again Bats. Here is some info that Dalhousie University is doing on Cannabis and Ra. It has the approval of Health Canada and the Arthrisis society of Canada.

  • I would far rather use my vaporizer than take opiates. It's nice to hear the rising demand for information by professionals.

  • Good to see you back bats. Missed you.😃

  • missed you, too :)

  • So pleased to have you back with us Bats. Terrible time you've had but such great news about being assessed for your guide dog, about time too! Happy Simponi's doing a good job for you, long may it last.

    Speak soon, take care. x

  • Thanks for the welcome,I have about a zillion 'is this normal' questions, but I'll save them for a post. :)

    xx

  • Yes good to see your back but not so good pain wise and I'm the same tonight hands are killing me and can't sleep so just got up

  • yeah, I'm getting a lot of nights like that too. I got a heating pad for Christmas, and I think it's my new best friend when I get the 4am blues.

  • I'm going to invest in one off them I think, as you can see by the time I managed a few hours sleep , I wore my compression gloves to bed and that helped the pain a bit but we will see what today brings,but I'm counting the days down as going to Canaries on Sat for a week so looking forward to getting some sun on my back xxx

  • We have some bats in our attics, and we always we always feel hugely privileged when we see or hear them. The rest of the time we're just happy to know that they're there, somewhere...... welcome back.

  • Hooray your back with us darling,and boy am i pleased to see your photo and post. I hope your as well as you can be my darling. I hope you had a good christmas and new year. Your right you do have to pick and choose,i do. Somethings i have no answer for so i only like the post so people know i have seen their post darling.

    Once again darling i am glkad your back with us.xxxxx

  • Welcome back azabat

    Good to hear your RA is under control but not good to hear you have been diagnosed with Fibro. My little sister has both too and it's not fair to get a double whammy!

    I'm just trying Pregabalin for pain a drug used a lot for Fibro. I'm working up to a therapeutic dose slowly.

    How fantastic you are getting a blind dog. That is brilliant. Can't wait to hear more.

    Don't worry about posting it can be too much. I left for a while as my hands can't keep up. I switched off all the alerts. We do what we can.

    How was your Christmas?

    Happy new year

    Love kilidee

  • Hey Bats, Happy New Year!!

    Glad you're back and especially to know that despite the pain, there is improvement!!! Keep improving, good luck and hope you get your dog soon!! You don't need to respond, I'm just happy you're doing better👍 and you're back with our group😊.

  • Hi Bats - I do the same thing. I respond to what is new or directed to me personally until I am tired then I just leave it to others. Welcome back.

You may also like...