Join the Conversation on
97 people
0 stories
11 posts
Explore Our Newsletters
What's New in

New Here & New to PsA & Psoriasis

Hiya! Well, I'm new to this group. I was diagnosed with PsA in January of this year, and have failed the first 2 drugs attempted. Tomorrow I start Tremfya as my 3rd, and likely final chance for treatment.

I'm a bit nervous that I'm going to react like I did to both Orencia and Otezla, and then I'm going to be left with no treatment options for it. It's already been over a decade of them telling me that I had OA, when in reality it has been #psoriaticspondylitis . The damage to my spine/neck/hips already is incredible. I've already been told that I will end up needing at least one hip replacement; they just *hope* I can hold off another 10-20 years (I was maybe 40 when they told me that).

What happens if I don't tolerate this drug? My only other potential option is to use a TNF-alpha inhibitor drug and very closely monitor my #Lupus (it's currently inactive). But there's a LOT at risk there. It's been a very long road with plenty of #negativesideeffects along the way.

#Psoriasis #PsoriaticArthritis #Anxiety #Depression #Stress #Lackofsupport #Nosupportsystem #AutoimmuneDisease #ThanksForListening

11 reactions 10 comments
This photo may contain sensitive content.

Venting about anxiety and depression

This is one of the few places I can admit it, but some days it is all I can do to just keep living. I am not suicidal. Some days I accomplish more on the job than most people, but there is always the specter that I am not doing everything I want to do—at work, at home, anywhere.

#workingfromhome is even worse—enforcing boundaries and then feeling guilty about it. I am Executive Director of a non-profit and there are so many needs and so few unrestricted resources. The whole world seems topsy-turvy.

Thank god for good meds, a loving support system and a cuddly dog. I’ll get through this one day at a time, but I don’t have to like it. #Anxiety and #ChronicDepression are at painful levels exacerbated by world affairs and #COVID19.

There, I feel better for having just written it in a space where I won’t terrify my family, friends, coworkers and employer (all of whom love me though I can’t love myself), a place where I hope judgment will be suspended, and maybe someone will understand. #ThanksForListening .


complaining a little

my wife was home for the past week which happened to be at the same time as a bad pain flare. She was able to go get me things and make me tea when I was in too much pain and too weak to do so myself.

Now she’s had to return to work and I’m still in so much pain and so weak and exhausted and it’s so hard without her here. I’m too tired and in pain to get myself food and drink. Taking the dog out front just for a quick pee makes me feel like I might fall over and to sob with pain when I get back in the house. I really need help during the day. I wish we could afford it. I have a PSW for an hour twice a week and she helps some but it’s not enough. #Vent #ChronicPain #painflare #ThanksForListening

1 comment

Some days are harder then others- looking at the moments

Everyday is a struggle and I hate my life most days. But that doesn’t mean I don’t have good moments in some days and nothing good in others. But either way, I’ve learned to challenge myself to think of one time I smiled everyday and to ask myself a series of question.

1. Did I smile because I felt like I had to?
2. Did I make a joke or did someone take my blunt words as something funny and sarcastic which made me smile for the wrong reason?
3. Did I smile because I saw joy in someone else?
4. Did something funny bring me to the present and the racing thoughts stoped just for a moment
5. Did I enjoy my time with those around me and forgot what was going on in my head for a while?

Some of these do not show good moments but upon reflection they might make you think positively. A smile to someone else might make their day. So even on the worst days try to make someone else better. Especially, if you feel like you can’t fix your own. Even if your friends don’t see an issue you’re having in that moment know you’re able to make someone else laugh which sometimes has the same effect on you even if you don’t feel any different right away. Also know you can tell your friends, it might take a load off your shoulders. Having the thoughts stop is always good to feel so try to let others bring you to the present if only for a a couple seconds until you find how to do it yourself. Sometimes through laughter with friends, even if you don’t feel perfect you can see joy around you which can push some positivity back into you spirt.

Some days are harder than others, sometimes I don’t have any smiles, sometimes I can’t see the good in the few smiles I do have. However, I’m trying to take the moments as they come and hope eventually I’ll see more good then bad. These steps are easier said then done but I figured if I wrote them out maybe I’d be more likely to do them. It’s hard to say if this will work but here goes nothing #ThanksForListening #Anxiety #Depression


When #BipolarDepression ruins everything good in your life...

My husband finally opened up to me tonight that the problems we’ve been experiencing for the last 9ish months stems from me changing my mind about having kids and him realizing that he’s been subconsciously pushing me away ever since I told him. I believe that me changing my mind about something so monumental gives him the right to change his mind about being in this marriage. I would never want him to miss out on being a father because I don’t think I want (or am too fearful to even attempt) to be a mom. I love him enough to let him go be with someone who isn’t sick and can give him everything he wants in life, but I don’t really understand why I should stay alive if our marriage ends. It has nothing to do with needing a man or being afraid of being alone, it’s just that I only really stay alive for him. I don’t want him to suffer the trauma of losing his wife to suicide, but if we divorce, the most logical thing to do in my mind is to end my own suffering once and for all. I know this is my depression talking and blah blah blah but I’m just sick of my illness ruining every single good thing I’ve ever had in my life. I just want to be done with it all.
#Depression #BipolarDisorder #SuicidalIdeation #venting #Anxiety #Sorryforthelongpost #ThanksForListening #CheckInWithMe


3AM Convo #CheckInWithMe

I woke up in the middle of the night and stared on the wall. I feel something inside me is not good. Deep in my heart it is telling me something is wrong. I tried to explore it. I said "Okay, I am sad." After that statement, I started thinking about the what-ifs in my life, the guilt i feel, the sadness i feel for myself feeling sad, and the blame I point to me. I reached out to a friend. Started a conversation as usual. After 4-5 exchange of messages I told him/her that I am sad. I told him/her why. Then he/she said that I need to fill in the gaps which are missing. I said "I wish it was as easy as that." The tears started to fill in my eyes. Several messages gone by, and I told him/her that we are ending the conversation because I said what I have to say. Lastly, I told him/her, "Thank you for sticking around when I needed people. I know you don't have much of a choice but you've decided to stay. At least, I see a 'light' during this dark times. It must be hard for you. Thank you!" #Anxiety #Holidays #ThanksForListening #Depression


I’m not sure who or what to thank but thank you

I just was told that we finally have a sort of diagnosis for my nerve pain and the injection treatments might just be what cures my chronic pain permanently after a few more rounds of them are done. I’ve waited for news like this for three years, and I thought at this moment I’d jump for joy but right now I just feel a sense of calmness is wrapping around my soul.

Pray that all I’ve been said is true and that everything is gonna work out, and thanks for all the well wishes I have been provided with in this community, you are all wonderful folks. I pray for your health and happiness. (Don’t worry I’ll still be around while they are figuring out how to cure my pain, but I’m relieved I finally see where the finish line may lie).

#ChronicPain #ChronicIllness #Positivity #ThanksForListening



I know my thoughts get dark, but thank you guys for all the support. You all are my candles in this dark place inside. 🕯 #ThanksForListening

1 comment

Thank you #ThanksForListening #ThankYou

I just want to say thank you to the people who are on here, receiving messages of love & knowing that I’m not a lone it really does help and I wish I could give all of you a hug and I’m glad you all exist because you guys help me and in return I really do hope that I help you. So thank you


Chronic Illness/Pain and being a Caregiver

How do you cope? I work full time, care for my mother 4 days a week. Maintain her finances and household as well as my family’s. I’m exhausted (prob the Lupus) and I feel like my efforts don’t meet the quality of care she deserves. I can’t image finding assisted living that’s affordable and quality of the facility. I know my mom would rather stay home. I’m the only child so it’s all on me. And I wish for once I didn’t have to make decisions. I don’t want to adult today. Rant over. #ThanksForListening #LupusWarrior #alzhemierssux #ineedanewspine #5levellumbarfusion