The longer the PsA goes, the less my wife seems to care.
It seems I am the family therapist now. Everyone (sibs, others) want to tell me how bad they feel, blah, blah… I try to never put myself in their place for pain, but some days all I want to say is “REALLY!! THAT’S ALL YOU HAVE TO COMPLAIN ABOUT!!” But, I don’t.
It is so hard for me becasue I have no one to talk to. Even my psychiatrist retired! I would just like to talk to someone without them trying to one up me with their problems.
We are all victims of “I don’t see anything wrong with you?”
My brother was just diagnosed with a small tumor in his lung. Formed on a scar, and now he is going to have radiation, but they feel pretty good about it. I have listened to him now for 6 weeks worrying about. I did remind him I had to wait 8 weeks before they could remove my cancerous prostate. I know what it feels like to wait, then wait 5 more months to see if I would need radiation. He forgets that.
Things at home have not been good. I think the wife and I are tired of each other. I think my wife has had enough. 25 years of teriible depression I suffred with until 10 years ago. Various other medicl issues, and now the PsA for the last 8 years. I would be tired of me. Actually, I am tired of me!
I am not sure how to advise about a spouse. I haven’t found the answer yet. I have days I sit or lay and just moan constantly. Wife doesn’t seem to care.
I am sorry to hear that things between you and your wife are not so great right now. Maybe some new conversations would help. What is she interested in?
I have kept back some of my pain dumping conversations when I talk to my husband. We have started watching a new tv show and I pick things he is interested in to ask questions about. It seems to have helped a lot. I also started a journal where I can write about my pain, fears, and stress. It helps to get it out.
Another great book of wisdom, humour, wit and a great go-to for depth and meditation is, “The Complete Stories of Winnie The Pooh”. Guaranteed to calm the toughest flares!
I love Winnie the Pooh! Alos the movie is very relaxing.
Things have been better. I started writing in a journal and that really helps. This past few months have been very hard with fare after flare and dental procedures but we are managing well. We have found a few new things to talk about and learn together. Thanks for all the advice everyone!
Hi, im new here,but definitely not new to psa. It’s really kicking my butt at the moment. Im finding it hard to keep telling my husband and adult sons. It seems they don’t believe it unless they see it. I was out of commission for about a week. My ankles and feet were so swollen and painful I could barely walk. They all were so helpful during tbat time. Im so frustrated with the meds not working. Sorry im venting. Noy helping you much. Just know i can relaye. Even with teeth. Ive been losing teeth lately. Root canal, then crown. Then they had to pull it. Hubby wants me to get implants,but i am too afraid
My sister has psa and her implaint failed miserably. Im not willing to risk it. Im leaning towards tbe bridge. I have always had beautiful petfect teeth. This disease can suck the life out of you. Im 49 and feel lime im 80. My 78 years old mother gets around better then i do. It quir embarrassing at times. Ok. Enough. Thanks for letting me vent. Glad i found thus forum.
Welcome here @Kelcull, we are glad that you found us. You really pack a lot in your introductory posting…all very pertinent, ongoing issues with those of us living life with PsA. I can sure relate with what you are experiencing with people, even close people just not getting “it”. Other than my walk/gate being obviously painful, I have no outward signs of PsA. The bit of psoriasis that I had is pretty much gone and my joints aren’t swollen…on the outside. But inside, that enthesitis is often raging and I feel like someone is pushing a nail into the joint. So when we present pretty healthy, WE think that THEY think, “what a phoney, it’s all in their head.” It does help if I just stop caring what others think. Your age ratio is pretty much right on…I’m 62 and sometimes feel like 93! That sense of premature aging while watching our peers go about life with such ease can get one down. But comparing really robs me of seeing the real joys of the moment. Stay in touch, and thanks for the good venting! I feel better already.
Thank you so much for your response. I’m struggling at the moment. Im flaring more and more. The pain has significantly gotten worse. It’s nice to chat with others who can relate.
Thanks
Kelly
Where are you at on your PsA meds journey @Kelcull? I was like you when PsA hit me from nowhere 6 years ago but I’m an awful lot better now. Cyber hugs.
Hi, I started with methotrexate. Made me nauseous. Then we tried otezla and celebrex. Otezla made me nauseous and I gave mr suicidile thoughts. So, I’m currently an infusion called simponi aria. It’s giving me Upper Respiratory infections. So, we are stopping the infusion and we are going to try cimzia and Lyrica . I’m hoping something will work. My fear is I’m not going to be able to work much longer with this pain. My feet and ankles hurt so bad. Worse then my fingers andcwrist. It’s unbearable at time. Thanks for listening.
Is there any reason you’ve not tried Humira or Enbrel or Cosentyx? All are good PsA biologics known to work well for PsA too. Be careful with the Lyrica as you have to wean off it, very, very slowly. I’d avoid if you can.
Celebrex is a great anti-inflammatory so I would stick with that too. What actual pain relief have you been precribed? Most of us need a rregular anti-inflammatory daily like Celebrex plus pain relief like Tramadol along with the PsA meds.
Has no one thought to give you some steroids to tide you over between changing meds? Sad fact is all our biologics take a age to get working at least 3 to 6 months and no biologic reaches full efficacy for a year.
Meanwhile using hot/cold therapy can give some relief - for example with your hands or feet, get two bowls fill one with nicely warm water and the other with iced water, plunge your hand into one for 5 mins and immediately plunge into the other for 5 mins and keep going for 30 to 40 minutes. The rapid change in temperature is a natiral method of taking down inflammation.
Also soaking in a bath with Epsom Salts can also help. And an old fashioned but really helpful thing for your hands and you could even try it with your feet is a wax bath. You can buy the same on Amazon. And again it helps. More cyber hugs.
Just for a comparison meds wise
Methotrexate (mxt) hated me, next up was sulfalazine which actually loved me and worked for a while. I tried biosimilars to humira and enbrel but sadly I wasn’t one of the lucky ones with either of those and finally I tried Cosentyx and bingo I hit the ‘it works’ jackpot. That was over two and a half years ago. But I take daily Arcoxia an anti-inflammatory low dose now since I’m doing so well plus low dose Tramadol.
Hello!! I’m so glad you posted. Sorry I am just now seeing it. For some reason I don’t get replies emailed to me on a regular basis. I don’t know why.
Sorry it took me so long to reply. I was out of town and the internet was spotty!!
We very much understand what you are going through. I also get tired of saying “I hurt” so most of the time I say other things. My husband always seems to know what is going on though. That is reassuring.
This disease is always taking something away. There are few days in a row where something isn’t hurting or inflamed. I do hope your medications start helping. Taking care of your mental health is always important. This disease can really do a number on your thoughts.
Guaranteed to calm the toughest flares!