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.