Finding Freedom

Finding freedom from PSA. This is basically my job now. I don’t work anymore, lost contact with many family and friends and former co-workers. I do have a couple loyal friends, we talk periodically, mostly they are asking about my illness and I move the conversation to them and for a few minutes I am the old me, it’s nice to connect and I know I don’t do it enough because this life I have now is hard and I’m still trying to find my way around it. They are very kind and I appreciate their concern but there is a disconnect because the old me is gone. The going out for drinks me, the shopping me, the happy me. Gone. My family, they struggle because there is no good news in my life, so what are they going to say or do? The old standard—-“ I can’t believe you can’t get better”. Me too.

Every day, upon gimping out of bed it’s the dreaded look in the mirror—-who are you? What have you done with me?? There is always a new rash, just where will it be today? It’s never really widespread, Thank God…..but it’s lurking. On the face is the worst, passing by mirrors—-it’s always quickly and looking another direction. No thanks. Moving about in the morning is a challenge but it gets better, just don’t sit or lay too long because it starts all over—stiffness, swollen fingers….. Think of the Tin Man—that’s how a body with PSA feels…..stiff, tight. Where’s the permanent oil?

Being positive while trying to find freedom from all this is next to impossible. I do pray, I’m sure not enough. Maybe that’s why. I sure do take an array of supplements, oils and lotions and so far no luck, sure maybe something helps and there is where the positive nature should kick in……I’m still trying. Still trying the latest biologic, dmard, etc. Do so every day but I must admit, it is lonely. Finding freedom from this awful disease is lonely. No one really wants to hear just how awful you feel today. They really don’t want to know about every pain from your toes to your nose and I don’t blame them……but I do wish they could try to understand, to try to see that I am trying and I am overwhelmed. This disease takes everything from us, we are our former selves of our past looking for freedom from this disease so we can participate in life again, our lives before PSA.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Psoriatic-Arthritis.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (5)
  • imschmarte
    5 months ago

    Hi AuntJana!! You are so very right, these stupid diseases make us feel ostracized from the rest of the population! And you are also right in the fact that no one wants to hear all of our symptoms and pains. BUT, my sister also has the same collection of autoimmunes as I do. And we DO share all our miseries together. We talk on the phone at least once a day, and it is the BEST medicine in the world, to have someone who understands what we are going through. Find yourself a phone buddy, someone, (even on here), that wants to talk every now and then. Talking on here is one thing, talking, and visiting in person, is the best medicine. Especially when it’s someone who first hand knows what you are going through. Good luck to you Aunt Jana! I hope you find some relief soon, not only from pain, but from the loneliness it causes!

  • Leanne Donaldson
    9 months ago

    You are right @AuntJana, PsA is lonely. It is isolating. We fear that those who love us the most will never understand our pain, and yet, oddly enough, deep in our hearts we don’t really want them to. Because we know that unless you actually live with PsA, day in and day out, you won’t understand, and I wouldn’t wish this on anyone.
    We put on a smile or a brave face and tell everyone that we are doing okay and move conversations on to more pleasant topics. But you know what? I’m here. I hear you and you are not alone. It hurts to get out of bed. It hurts to discover a new symptom try and find ways to keep the beast at bay. I can’t stress this enough. I’m listening and feel so blessed that you trust us enough to share your story and your struggles. I understand your loneliness and am sending you lots of gentle hugs today. I spent hours comparing the “old me” and the “new me” and have come to the conclusion that there are many things in life that change us, getting older, meeting people, lots of things. What we do with those changes and how we look at them is up to us, but it is all part of our story and makes up who we are NOW.
    -Leanne, Community Moderator

  • AuntJana author
    9 months ago

    Thank you Leanne, you are very kind and have such a good outlook on everything. Thank you for sharing your positive insight.

  • mich54
    9 months ago

    I have been trying to find out just what is wrong with me ..for over 30 years! I finally figured it out (basically myself) and now I am about to start on Humira. I tried methotextrate for over 3 months and it relieved none of my joint issues. I like the explanation of the tin man. That is exactly what it feels like. My whole lower half is stiff and store. And it is very hard trying to explain it to people — but yet not sounding like you are complaining. And I think no matter what, they just do not get it. My husband especially, just will not get it. It’s like he just thinks I’m making it up or something. It’s SO frustrating.

  • AuntJana author
    9 months ago

    So sorry mich54. It is hard enough dealing with this disease every day without relief. I hope you have success with the Humira.

    Sometimes I will send my family articles—some from here sometimes, so they can read about this awful disease. When it is about someone else in the same situation, well, they might reflect on it in a different light……ask him to go to the Rheumatologist appt. with you, tell him you need an advocate. Hopefully, he will gain some insight.

    AuntJana

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