It’s been so long. Remember me? I used to be on here daily, as well as on Ben’s Friends other sites. And then I fell off the edge of Planet Ben’s Friends. First of all, my apologies.
You see, it came down to taking some of the advice that I gave so often to others: self-care comes first. It started with a biologic that failed after I got a Covid booster. If I ever doubted what Humira was doing for me, I knew then. Those were dark and depressing days, I was tired in a way that only this group can understand, and I got behind (and then hopelessly behind) in my work here and around Ben’s Friends. I lost the plot. Every time I tried to come back, I had a panic attack. I got covid. My husband broke his ankle, and was non-weight-bearing for three months. Unable to get the hang of crutches, he was chair and bed bound, and nursing became my full-time job. I remembered why I became a teacher. And that was only the first of several challenges that followed and swallowed up my life.
I still feel terrible about abandoning my Ben’s Friends post, and leaving my many friends here in the dark. Guilt and shame set in and … well, you know the rest. Please forgive me.
Thanks to @tntlamb, who was pretty much the only “Ben’s” person who I stayed in touch with very occasionally, I decided it was high time I showed my furry red face with floppy ears again.
I’m so sorry, my friends. Can we pick up where we left off? Will you catch me up?
Love and hugs to you all, and warmest seasons greeting to you and yours.
Welcome back! I’m sorry it’s been such a rough time. I know people were looking for you and wondering why they had been abandoned to Merl and me (and Richard).
It’s so lovely to see you again. I’m so so sorry it’s all been far too much to cope with but I get it - I really get it.
You’ve helped so many people over the years but you forgot to ask for help from us when you needed it. Massive helpers like you are often do this and they most certainly never intend to do it either. So you haven’t done anything wrong and there’s no reason to feel guilty or indeed seek any forgiveness either.
Life is tough enough just anyway with all the curved balls it can throw at us but also dealing with your own chronic disease behaving too badly and throwing you around - sometimes we just need to get off the merrygoround trying to keep all the balls in the air and sit in the corner for a while.
If it helps I’ve slid into this holiday season with nothing done, no cards written, my house needs a really good clear out of junk (years of junk) and and and. But all I’m hoping for is to use this time off work between Christmas and New Year to hopefully just read some novels, eat too much chocolate and probably drink too much wine too. I don’t really want to see anyone, I don’t need long phone conversations either, infact just leaving me alone would be nicest present anyone could give me. It’s not that I don’t care about other people, I really do but I’m all out of spoons just right now.
Very possibly failing biologic here too and it sucks doesn’t it? It could also be just a time of massively increased disease activity too (it’s been going on months) which even the best PsA med can’t contain all the time - who knows. But if I continue to walk my dog in the manner I did yesterday something has to change. During the week my right hand blew up intensely painfully and I literally couldn’t use it and then poof 48 hours later it was ok again. My manager at work thought I was lying. I prefer keeping my ill health more under wraps (it’s supposed to be an invisible illness isn’t it?!) not looking like a 90 year old limping along with aching SI joints and ridiculous leg tendon issues and being out of breath on being out for a short dog walk with my dog who kept waiting for me to catch up with a puzzled expression.
Anyway onward. It’s so lovely to see you and hope this holiday season ensures you have some lovely times with lots of smiles. Always grab the good stuff and let the bad stuff flow on by.
Hello again!
I don’t think you need to feel bad or ashamed. We all go through those times where life seems to hate us and things get bad. The thing to focus on it you are here now. We missed you and we are happy to see you again.
Things here are stable but ok. My 13 year old son was diagnosed with Crohns last year so all my focus is going into helping him. So I have good days and bad days but it is mostly due to stress. I can live with that for now.
My in laws are in town for Christmas. It is nice to have some family around to celebrate. I’m also adding a new lego house to my lego christmas village. Building those makes me happy.
I’m glad you are bck @Seenie . I missed those floppy ears.
Seenie! Yea!…I just did Snoopy’s happy dance seeing you back here. You were so instrumental in helping me understand this disease as a newbie. And like others have said, absolutely no guilt worries needed on your part. In fact, because you are back, your need to leave and heal IS actually part of the journey as we keep learning from each other. If you get overwhelmed, please feel free to pace yourself as needed with Ben’s Friends and no pressure to hyper respond to everyone. But as soon as you are ready, we need to get our business venture off the ground…remember those T-Shirts? The ones that say “PsA NOT PSA”? Maybe ready for next Christmas. Thanks for coming back and good to see that you haven’t aged a bit in two years!
I went from Humira to Rinvoq (2 years) and just started Simponi late October. It’s not doing much yet but the low dose prednisone keeps me functional.
I’ve no idea! They tell me I’m an extrovert. However I’m one of those extroverts who love alone time too. My PsA and the meds like me to have alone time too!
This is the first time I’ve logged in in quite a while. Seenie, you were so helpful to me a while ago. I’m so glad that I decided to tune in on this Christmas Eve morning. My 40 year old daughter has also been diagnosed now with psoriatic arthritis. It breaks my heart. I’ll look forward again to checking out the conversations here. I really need support of peers who understand. Merry Christmas to all!
I’m with Amos! My happy dance is happening now.
Seenie, you have NO reason for apologies. I’m one of the myriad newly diagnosed PsA patients who somehow found this site - and YOU! In the months following, you reassured me, you taught me so much, you explained that “the gap” would end and that feeling better was not lost to me forever. You were, literally, my lifeline.
I’m so sorry you have gone through a dark time. Also glad that you have the strategies to guide you through it - of course that means following your advice about self care. I hope you know, that all of us on this site, would love to lend a shoulder should you ever want one. I am so happy to see you back!
My mom was diagnosed about ten years after I was which means I’ve been really able to help her out. Hopefully you find that you can be a big support for your daughter in the same way
Sometimes real life is terrible, but it has to come first.
This is my first Christmas without any of my immediate family. I lost my brother in January, and he was the last immediate family. Spent Christmas Eve with my wife’s family and that was good. Though I am having to help her now because she had to move her mother to assisted living a few months back and is going through getting her mom’s house ready to sell.
Always, something. But I think this group knows that better than others. Getting older sucks but life must go on.
Thank you for coming back. I must say, I really needed to read all the messages everyone wrote. I have been struggling as well. The alone time is what i have been craving lately. I told the family i don’t have much to give. Like someone else said, my spoons are all used up after a long day at work. I guess what im trying to say is it so nice to talk with people that understand this invisible disease!
Hi Seenie and welcome back! You have no need to apologize your situation explains your response and everyone knows how much you do here. Every superhero has to take their cape off once in awhile! Hopefully seeing all the loving replies from so many members helps you know that you have made an invaluable impact to so many of us when we needed it most!
Hi Seenie and everyone!
I’m also guilty of not keeping up with the group. My excuses are many—as in acquiring13 grand-kids who have captured my heart and time—attending their sports events, etc., etc., plus after retiring at 68, taking on a new part-time job last year at an elementary school. Then there’s my husband and my 99-1/2 year old mom, our 4 adult kids and their spouses, and and and………
Also, I’ve been pain-free - psoriatic arthritis pain free - for 10 years since I started Enbrel. I even asked my rheumy if I should go off Enbrel, but he said no way! He said my PsA could come back worse than ever and we don’t want to take that chance.
Oh, there’s still pain. But the PsA was the worst. I’ve passed about 35 kidney stones in the last couple of years, which can be very painful, but lucky for me—mine aren’t as bad as some people describe. I also have osteoarthritis and heel spurs and, you know, all the junk that comes with being 71.
But, I still say life has been good to me. I hope everyone here is able to get answers and relief from their symptoms. If you don’t remember me—I was the biggest skeptic when it came to biologics. My rheumy had a hard time convincing me to go on Enbrel. Finally, after about 7 years of psoriatic arthritis symptoms increasing (and psoriasis for 40 years) I caved. It was the best thing I ever did for myself. So, anyone out there with a bad feeling about biologics, don’t be afraid. The benefits far outweigh the risks.
Grandma_J
Hey there @Grandma_J good to get an update from you.I can relate with you on some things…4 children and spouses, 13 grandchildren and many activities to attend. But I certainly can’t identify with being PsA free…On my 4th biologic and into month 4 on Taltz. I had a disappointing appointment with my rheumy last week. I wait 4 months to see her and she gives me 17 minutes of time, no information other than, “Oh I see your inflammation markers look good”. They always do…Sigh. I tell her that I am having more pain in more places and she felt two fingers and pushed on two toes and said that she isn’t finding any inflammation. Yet, I can’t sleep because of foot pain, shoulders, hands, psoriasis on my eye lids and into my tear ducts. It has cleared up most of my psoriasis flare but unless I take Celebrex, I nose dive into all sorts of pain. I think I am becoming passive and resigned to this must be as good as it gets, stop complaining and live with it…a sort of “whatever” apathy towards the medical system. But hearing that some do have great success from biologics is helpful. The rheumy suggested I add sulfasalazine again but it didn’t like me.
Oops…this was supposed to just be a “good to hear from you” not a vent…guess I needed one. Take care, have fun!
Its good to hear from you Grandma J! Sounds like you are out there living life as you should be. Wow, 13 grandkids! That’s a lot of sports games. Enjoy every minute of it.
They tell me I’m an extrovert. However I’m one of those extroverts who love alone time too. My PsA and the meds like me to have alone time too!