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.
-JIM

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Comments

View Comments (7)
  • Koffegurl
    2 years ago

    Hi Casey and VickiN. Thanks much for the comments and support. I was off of Prednisone fairly quickly, but flared up again right away. I’m trying to hold off of restarting for a few more days as I need lab work and they want me off of Prednisone for 2 weeks prior. Also, I want to add a huge THANK YOU as I was the Flare kit alternate winner. Among other goodies, I was sent two paincakes and am working with those right now. They’re extremely cold, I’m following the directions but feel I need a barrier between them and my skin. Still trying to find the seemingly elusive magic dragon for meds tho. I’ll keep you posted!

  • Casey moderator
    2 years ago

    Hi Koffegurl. Let us know how everything goes with your lab work and eventual restart of Prednisone. We’re here for you, and wishing you some relief soon! Also, YAY! I’m so glad to hear you’re enjoying your Flare Kit! It’s probably a good idea to use a barrier between your skin and the cold if it’s irritating you. Thank you for letting us know and sharing! Please do keep us posted on your medication journey. We’re eager to hear how everything is going! Sending gentle hugs your way! -Casey, Psoriatic-Arthritis.com Team

  • Koffegurl
    2 years ago

    Please note that you are not a “”complainer or whiner”. What we feel physically and emotionally takes a huge toll. It does get better…for a little while at least. I am in my first flare in over 2 years. I’m back on Prednisone, but hoping I acted soon enough that the flare doesn’t last too long. My last flare lasted over 2 years. Hang in there and fight the good fight. I’m happy to hear you have a great, supportive hubby. I do too, and it makes me feel not so alone!

  • Casey moderator
    2 years ago

    Hi Koffeegurl! First of all, I’m so sorry to hear about your current flare!! Please let us know if there’s anything we can do to provide you with support during this time! (or anytime!) I’m glad to hear that you have such a supportive hubby! That’s truly so important and so amazing to have a support system like that! Secondly, I just wanted to thank you for the poignant support you bring to our community. Your words on not being a complainer or whiner are so true. We’re here for everyone, even if it’s just when they need an ear to vent to!!! We know all of our community members speak from the heart and from personal experience, and encourage everyone to continue to share with us!! We’re glad to see you’re continuing to be an active, and supportive, member of the group! -Casey, Psoriatic-Arthritis.com Team

  • VickiN moderator
    2 years ago

    Hi @Storm!
    Can I just say how incredibly grateful I am that you took the time to share your journey with us? I know between the fatigue and joint pain, even sitting at the computer to type can feel overwhelming, so I really do mean it when I say how appreciative I am. It also takes a lot of bravery to share your feelings, especially when we spend so much time trying to put on a polite face for those who don’t understand. We understand here, and I hope you will come to this community (and to us!) anytime and every time you need support or a kind ear to listen.

    Your Doctor is absolutely right that it can take some time for the meds to kick in (anecdotally I have found listening to people’s stories here that the longer it was between your first flare and your diagnosis it can seem to take an unreasonable amount of time!). That being said, definitely keep that line of communication open with your Doctor. Sometimes we have to cycle through a few medications before we find the sweet spot, so share these concerns if you really feel like it’s been too long.

    Because you mentioned that medical costs are difficult for your family to manage, I thought I would share these articles with you that talk a bit about how you can get your meds/visits paid for without insurance (or with inadequate insurance coverage):
    https://psoriatic-arthritis.com/living/paying-for-cost-of-psa-care/
    https://psoriatic-arthritis.com/answers/paying-for-meds-without-insurance/

    I also thought you might like to read this article from one of our contributors/moderators, Leanne:
    https://psoriatic-arthritis.com/living/dear-friend-newly-diagnosed/

    If you need any other resources, please reach out! Health Union (the parent company for this site) also has communities for COPD (copd.net), Asthma (asthma.net), and Migraines (migraine.com). I’m also over on PlaquePsoriasis.com, and the Facebook pages for both Pso and PsA. Myself and the other moderators are always around to chat or to pull up resources for you, so don’t be a stranger 🙂

    Lastly, I just wanted to share that personally, being part of these communities has been a huge support for me and I hope they will be for you too. There are so many other people out there struggling with the same things we’re struggling with, and it’s such a comfort to know that we are not alone. You are not alone, we see you, and you are absolutely welcome here. Sending hugs to you and your family, and thank you again for sharing your story with us.
    -Victoria (Psoriatic-Arthritis.com team)

  • VickiN moderator
    2 years ago

    I look forward to seeing you around, too!!! <3
    -Victoria (Psoriatic-Arthritis.com team)

  • Storm author
    2 years ago

    Hi Victoria and nice to meet you 🙂 I have been a member for some time now, I was just hesitant on sharing my story (shy I guess). But, I do want everyone here to know that there is an expansive amount of helpful information here. I have learned a lot about my meds, my disease and what is happening to me by reading the forums, and other peoples stories long before I posted my own. I appreciate the links you gave as well and will be checking those out as well. Anywhere to get some help is always appreciated. I also get information from both this site and PlaquePsoriasis.com on my husbands facebook page. 9Why his I don’t know but probably because I’m there more than my own, but its there and that’s all that important) Thank you all for the help and yes, I will try to not be a stranger. I’m not online a lot, but I will make a habit of stopping by and seeing whats new 🙂

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