A little support, perhaps, please

I know a lot of you have asked me not to post positive things here (and I have not, I have been off this site for a while) and you don't really want to hear from me (so I haven't been here) but I could use just a little support from you guys tonight. I know that I always wanted to look for the positive in this disease and many of you didn't want to go that way with me. I thought I could beat this, I thought I could be better. Perhaps I can't at this time. It's horrible, I have new grandbabies, a job and a life, how do I manage this stupid disease and how it disables me to to those things? Ideas, suggestions on how I can be the best I can be? I am so over all our issues, it's hard to explain. Hope you guys get it.

OK I got it (no more personal messages please, I got it) perhaps not the best way to explain how I feel, but I hope you guys will at some point get it and understand where I am coming from. I don't mean to look at our disease as a cop out or something, I am trying to be the best I can be. I am sorry if sometimes I offend some of you, it is not my intention. Swollen fingers and toes, torn knee and hip are now, hope yours is better.

stay strong MAT.. you can get through it. Believe that you can..


So sorry you're having a rough time. For me, I take it one day at time otherwise it's overwhelming for me. I've learned to ask for help and to say no more often. I realize, at least for now, I need to put myself and my health first. Is there a support group near you? Would seeing a therapist help you sort out things help? I also write lists when I feel overwhelmed and it reduces my anxiety greatly when I put it down on paper and plan how I'm going to get things done. And I ask myself, do I really need to do this? Is this important? So, I delete some items from the list also. Try to do something enjoyable for yourself at least once a week - whether it's a big or small thing.

Hope this helps,


When I need a break I manage my pain with meds and practice denial...Sorry it isnt really brilliant or insightful. It's just being real. Hope you feel better.

I don't know who said what to you in private messages. I sure didn't see anything in the boards. Everyone is welcome (well unless you are trying to get personal information, sell something, or are trolling bu thats about it) Wwe are here to help each other with PsA. Lots of folks don't know how to handle "personal stuff" with folks they don't know. So they either ignore it or sadly take it upon themeselves to tell YOU what to do with it. Doesn't mean they are speaking for others.

Yeah lots of "positive threads" are started and die, sometimes a lingering death. Its not because people aren't "positive" or don't care, its because they don't have a point of reference. People don't like "gripers" those who give every detail about their disease constantly including every ache pain, Dr. appointment etc etc, especially when that person is comparing theri disease with everyone else. "Yeah my sagiyarius hurts too but my capricas" reeeeeally hurts.

What we can do is talk about PsA Victories certainly, defeats of course, but more importantly how to fight the fight. We can make sure we are NOT defined by the disease, we can call an occasional Bull**** on each other and we can tell the truth. When we share those things we can be supportive. Everything else sounds like denial or fluff.

This is a BIG WAR. Wars are won or lost by winning or losing battles. One battle may be all it takes for a major win..... I may be off base here, but my impression is MAT the reason people didn't respond to you, or responded rudely is because it seemed you wanted to talk about everything BUT PsA. You honestly can't talk about your disease that many places BUT HERE its expected.

Frances is right, you need to take care of yourself. That's not a selfish thing at all. Everybody you have a relationship is depending on you to be the person you are. If you do not know who that person is and what that person can do (or can't do) then it has an effect on your relationship. Imagine planning a deep sea fishing trip with a friend, travelling across the country to do it only find out he gets seas sick, has always gotten sea sick, but didn't bother telling you. And for two days he has his head over the side of the boat. Fun Huh?

We are here to help, want to help. We just need to know a bit more about your disease. What meds are you on? when were you Dx'd?

MAT said:

OK I got it (no more personal messages please, I got it) perhaps not the best way to explain how I feel, but I hope you guys will at some point get it and understand where I am coming from. I don't mean to look at our disease as a cop out or something, I am trying to be the best I can be. I am sorry if sometimes I offend some of you, it is not my intention. Swollen fingers and toes, torn knee and hip are now, hope yours is better.

I, as usual, agree with Lamb. I am so sorry you are going through this MAT. I know a lot about denial, in me and in my family. It is painful as the scales fall from our eyes and we see our disease. Expect to feel badly as it does hurt. If you need help to cope we are here as is more professional help. The journey begins with one step. I am sending you prayers and hugs.

I know it's so hard. Just tackle one day at a time. Positive is good. I know one positive thing I can take from dealing with PsA is don't wait if you want to do something. Just go for it ! Give it a try. There are things now I've never had a chance to do that PsA will very likely prevent me from doing.

We are here for you :)

Mat, I am sorry you are going through this. I really am. Most days I try to have a positive outlook, but then other days reality b*tch slaps you. lol. My mantra has always been “it could be worse”. It’s the truth, you know. I have 2 friends with different auto immune diseases and they are so sick, so crippled, and one will eventually go blind because of it, that I can’t really complain too much when I compare myself to them. I just thank the good Lord I can see, and aren’t as bad off as they are.

Now that’s not to say that I don’t have my occasional pity parties for one. ; )

I am a black belt, was very much into weight training, had loads of energy, and was way thinner 10 years ago. Psoriatic arthritis and Crohn’s disease have taken a lot from me and I can’t help but be a little bitter. But, that is normal. I mourn what I was and what I had. Now I have to learn to live with what I have become, and to make do and keep moving forward.

Good luck to you Mat.

MAT, the people making you feel bad should feel ashamed of themselves! Clearly they have no life, no class, and no brains.

You're a welcome member here and I for one enjoy having you here!

Mat, Positivity is good. Life doesn’t always have to be negative. I thought that’s what support groups are for to support and encourage each other.
I would ignore negativity and dont let anyone rain on your parade.

Don’t let someone dim your lit, simply because its shining in their face. ---- I saw this on fb forget where.

Hang in there

Hi Mat it is lovely to read everyones reply, so you have plenty of support behind you on here.

Take care


You sound so frustrated…actually, no, you sound sad and tired. :frowning: I’m sorry that you are having a tough time of it.

A) You do not have to read private messages from anyone, and you have to friend people In order to receive these messages. Sounds to me like it’s time to thin the friend herd. People who are wasting there time trying to drag you down are just sucking out your joy. Don’t allow them to do that.

B) I don’t think that there is anything wrong with trying to see the bright side of things. If you enjoy writing about happy things, write it under the blog section. You can be as happy as you want to be there, and people who do want to see it will find you. You can insulate yourself a little more by communicating your family stories, thoughts through the blog section. If I have just thoughts I want to share that’s where I go.

C) Stop trying to burn the candle at both ends. I feel like I’ve said something like this before :-), but it is true. No matter how positive you are, the disease is still there draining energy, causing pain, and mobility issues. You have to slow down and be kind to yourself. Pick what is really important and leave the rest for another day. You are not Wonder Woman and neither am I. Since we aren’t super heros we have to prioritize our lives differently than we did before. I pick my family first. They get the best of me. Everything else gets the leftovers, and I am fine with that. If you expect too much from yourself, you are setting yourself up to fail, and who needs that? Be a little kinder to YOU.

I know you posted this a day or so ago, but I wanted to chime in. I sincerely hope you are feeling less blue now. ((hugs))