A very long road that just got longer….
I was diagnosed with PSA back in Nov ’16 right before Thanksgiving. I had known for some time that something was wrong with my joints but never said anything because I thought it was just one of my other chronic illnesses acting up. I also have COPD/Asthma, Chronic Pancreatitis, Back Issues from a surgery that went horribly wrong in ’95, I suffer from chronic migraines and few other minor issues. I’ve has psoriasis since I was teenager (I’m 53 now) but it was confined to my elbows and knees. About 10 years ago, though, it started spreading to a few other places. My ears, scalp, nose, a few places on my legs etc. I paid no attention and just figured it was stress. In Jan or so of ’16 the joint pain became horrible, so bad I finally I mentioned to my primary care doc. He said it was probably PSA and I laughed.
By the summer I was no longer laughing. My hips, knees elbows shoulders and feet were all being effected. He did blood work and recommended a rheumy doc. After all this got done and a few more tests were performed, the diagnosis was made. I’m still trying to wrap my head around it. Not only another chronic illness to deal with but one that is changing my life in ways I never dreamed of. My movements were already constricted due to COPD, but now I can barely walk sometimes due to my joints just not wanting to work or the pain just being unbearable. And I am used to being in pain 24/7. My diet was also restricted due to the pancreatitis, but I find fixing my food is so difficult now I need help cooking. I can’t peel veggies, I can’t stir a pot of soup, hell I cant even stand long enough to even cook eggs sometimes. I am lucky to have a good support system at home and my husband helps me as much as possible. I am on methotrexate and Humira already but so far I am getting no relief. The doc says it takes time so I am being patient. These added meds pushes my med load to 16 different medications I currently take now to just make me stable. I was already on a long road and had already learned how to deal with the illnesses I already have then this comes along and now that road is much longer and I no longer see a light at the end of the tunnel. It is such a fight sometimes just to get out of bed, my legs will literally be straight and I have to wait for them to bend. Or my energy just gives out and I have to lay down and wait to have energy to move again. I have a dog that keeps me going, he needs me during the day to take care of him and that forces me to move. He is also good company.
It has taken me a lot to write this because I don’t want to feel like a complainer or a whiner because I know so many others are so much worse off than I am. This is a horrible disease. I hear about people having flare ups, I’m waiting to not be flaring at all. Does that really happen? Is there a time when there is relief even for a brief period of time? The pain is constant, especially in my hips, knees, shoulders, elbows and feet. My doc believes that I have been suffering with this for around 10-15 years but because it was never treated it is pretty much widespread in me. My hands will start hurting and I will have to stop typing or writing, my eyes are all messed up and tear up all the time and just go blurry on me. I’m working on saving money for the eye doc, I’m on medicare so I have no insurance for eye care. Medical costs in my family for me are outrageous but I have read other stories and I see that a lot of us are in the same boat with that. I’m not in a wheelchair yet but my doc has mentioned having someone come once or twice a week to check on me because I do fall a lot and I bruise easily. I am trying my best to hold onto my independence but this disease robs you of so many things. Thank you for the time.