Look who has joined us!

So I was in the mood to welcome some of our newest members. And here they are! I’d suggest we should do a wave for them, but some of us have bad shoulders. So a “Reply” and “Hi!” will have to do.

Let’s give them a welcome! All you have to do is click “reply” at the bottom. All the people tagged here (the new members) will automatically be notified of your post.

These are our newcomers for the last month or so. As usual, they are an international bunch, and like us … well, you know what they are going through.

@Hannie is from Missouri, and was diagnosed with Ps as a teenager. Now in her twenties,she’s joined our “club”. I’m sorry you’ve got this disease, Hannie, but glad that you’ve been diagnosed. That’s the first step towards feeling much better.

@chybaskids, Terri, sounds a bit like me, with joint replacements and a spinal fusion. She stays active too, like a lot of people here.

@akaPixelChick is a Brit living in Germany, and somehow the doctors there were able to do what the people at the NHS couldn’t manage: give her a diagnosis. Guess what she does for a living?

@TomH joins us from the warm tropical part of New Zealand. He likes to fish, @tntlamb! You’ll have to swap fish tales.

@Seashell is from the UK, and has had PsA a long time. Like so many of us here, she’s a dog lover. My :heart: dog was a Vizsla, who are your furbabies, Seashell?

@Steve is another Brit, and he’s from Lancashire. He was diagnosed fairly recently, and he has one of the qualities that help a lot when you’ve got PsA: a sense of humour!

@Noela doesn’t know it yet, but she is lucky. It sounds like her PCP recognized her symptoms fairly quickly, and referred her to a rheumie.

Did you know that if you click on the t@g, the member’s profile pops up and you can read their full profile? (That works only for members.) And if you do that, you also get a blue “message” button which starts a pre-addressed private message to them, in case you want to do that.

New members, we’re glad you’re here.

Seenie

3 Likes

Hello everyone, I hope you’re all having a lovely weekend.

1 Like

Welcome to LWPsA! Wish you didn’t have to be here, but glad you found us.

This is a great place to share and get support, it has been a literal lifesaver for me, particularly when I’ve had doctors raise their eyebrows or be dismissive about symptoms that weren’t considered classical, and for understanding how to advocate for myself to get the best treatment I can. You tend to get out what you put in, so don’t be afraid of jumping in with questions or stories!

1 Like

Hi @akaPixelChick, my weekend has just started! My back is finally easing up, so I think re-potting some plants might be on the agenda :grin:. What about you?

1 Like

Glad you found us, the wealth of info is so valuable! So much so, I deleted my Facebook account! Who needs it when you have LWPsA?

1 Like

Welcome to all! The beginning of this journey is full of so many questions and if you already have travelled there is no better people to bump into on the trail!

3 Likes

Thanks for the Welcome‼️

2 Likes

Waving right back at you :wave:

1 Like

Waving back at you all. My sense of humour definitely helped me this morning when I couldn’t get to pull myself up having had to get on my knees to sort a problem at the bottom of my Fridge. I ended up crawling to the low arm of my Sofa to get up. Whilst I did have a giggle to myself, very soon the reality kicked in and I said to myself “ Is this the way it’s going to be Steve?” Any tips to help would be very much appreciated.
Thank you
Steve

Welcome Steve! So many of us know that feeling of being on the ground and the pain in trying to get upright.
A few things to consider:

  1. Think ahead and have a cane or walking stick close by
  2. Throw a hundred dollar bill on the floor in front of you so at least it was worth getting down there.
  3. Keep your leg muscles as strong as possible, it makes the transition quicker
  4. Strategically place couches wherever you might need them!
  5. Buy a new fridge whenever needed to avoid problems that get you on your knees in the first place!
    Hope this helps, I’m sure others have more practical ideas.
    It’s quite amazing how much effort it takes to heave our bodies into that natural position of standing. I’m walking ok but getting off my arse can be a real bummer!
1 Like

Hey Steve, welcome. “Is this the way it’s going to be?” LOL I think we’ve all had that thought at one time or another! Yup, we get all that. The good news is that the scene took place in the privacy of your own place.

And I see you’ve met our very own Amos: his sense of humour keeps us smiling, and helps us keep it all in perspective! And Amos is (as you can see) a really punny guy. Seriously, though, Amos’s story is an interesting one, as are most stories here.

Steve, what shape are your joints in? I see you’re on Methotrexate and its side kick Folic acid, which the auto-corrupt on my phone changes to “Frolic acid”. (Sounds like something straight out of the sixties, doesn’t it?) Has that combo done wonders for you? How long have you been on that?

I have two knee replacements, but I well remember the pre-replacement days. :grimacing:

So glad you joined us! We have quite a few members from the UK, in fact two of our mods, @Sybil and @Poo_therapy are over on your side of the pond.

C

1 Like

Thank you so much for this. I think it’s more work now on the exercise bike to strengthen my muscles. It takes me all my time to get my wallet out let alone throw money on the floor :rofl::rofl:.
I do have to use a walking stick for another condition I have and so it’s definitely close by.
I guess it was just the stark reality that hit me.
I really appreciate your quick reply , it means a lot.
Regards
Steve

Hi. Thank you for your quick reply I appreciate it . My joints are not brilliant from my knees down but I am going to use my exercise bike more . I do general exercise and strengthening exercises.
I am taking methotrexate and folic which have worked a lot better than the initial injection I had. I am on medication for another condition but haven’t noticed any issues with mixing them. I believe that on the days I feel good I do too much and then boom!! I struggle. I know I need to manage it a lot better and it’s nice to know I’m not on my own. I do giggle at myself as it definitely helps and everyone knows I am like that . You can’t wear a mazy every day.
I have just replied to Amos and as you say quite a character.
I am also now completing a daily food plan/,intake and exercise done sheet. I will hopefully see if anything I am eating or doing is affecting me either way. I also put an emoji to chart how I am feeling.
Thank you once again for getting back to me it means a lot to know I’m not alone.
Kind regards
Steve

Oh, we have ALL been there. And we all know what the “next” day is like. Trouble is, what’s too much for me depends on … well, I don’t really know. And that’s the problem.

The food/activity chart is a really good thing to try. Some people would say put the weather on it too. It’s been really hot over there, hasn’t it? And stormy in some places.

You aren’t alone. And that’s the beauty of Ben’s Friends.

Thank you. I have to say I am already feeling better after this morning’s incident. It’s so nice that people are here to help and give advice .
Regards
Steve

Haha! I love it! So we have a bunch of Stand-Up comedians with bad knees…this should interesting!

Great idea. I will add the weather to it . It’s boiling here and I was just saying to myself earlier as I sat on what I call the West Wing ( it’s actually a tiny Patio🤣) Life isn’t that bad after all is it Steve, Now trying to get up off my patio chair is a different story !
Regards
Steve

Hi everyone. Thank you all for your lovely welcome messages. I’ve been advised to take Methotrexate also. However, I have to wait until my rheumatologist come back off holiday before I can be prescribed some so I am not happy I have to wait longer. Also I had tuberculosis when I was 4 years old, so I am really worried about this coming out of remission. I’m also curious to know what side effects you’re all experiencing from the Methotrexate.
I had my x-rays done on my knees, my knee cap looks broken yet the orthopaedic doctor did not recommend any treatment, so I’m quite confused about that.

Having a history of tuberculosis certainly complicates things and your doctor will need to work closely with you. In terms of the X-ray that you shared, I would contact your doctor who ordered it and asked specifically about the kneecap.

Welcome!

1 Like

Hello. am also on methotrexate, and though terrified of chemo after having had it for cancer the dose am on, and the fact am also taking a biologic, have resulted in my leaving my wheelchair so thankful. Find v useful also gluten sugar and grain free diet, all the best