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Will someone please listen to me?

I have advanced PSA and other comorbidities. I have been diagnosed with Stage 3b kidney failure. I can’t find a team of doctors anywhere willing to communicate with one another (office notes at the best). Everything that allows me to function with my PSA, reflux, etc. is contraindicated for CKD. But no one has any reasonable suggestions in order for me to merely function (meaning not lying in bed all day). Even my PCP is a problem. He laughed at me when I told him about my brain fog worsening. He claims there’s no such thing! Oh really? He then announced that he wouldn’t renew my HRT because I’m too old and I don’t need it any longer. I’m 65, I think that’s young! Removing a med that is going to give me more symptoms is something I can’t face.

I just suffered through 4 weeks of being bedridden (PSA Cinderella syndrome), not remembering the first 2 weeks at all. I’m at my wit’s end. I’m a compliant patient. I’ve avoided all NSAIDs, steroids, PPI’s, etc. to save my sorry kidneys. However, I’m very close to telling the little suckers that they’re about to be sacrificed for the quality of life.

I’ve suffered from this autoimmune disease for 60 years. And for the 1st time in this long journey, I am totally discouraged. Just wait until my rheumatologist sees my latest bloodwork. I’ll bet my 10 crooked fingers that my liver enzymes are elevated. In lieu of anything I can no longer take for any kind of pain, my chilled bottle of wine calls for me telling me all is well.

How much trouble do you think I’d be in if I kidnapped all my specialists and forced them to communicate? Yeah, that’s what I thought. All reasonable suggestions are welcome. Now, what to do about this headache of 3 days?????????!!

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Comments

  • Ava
    11 months ago

    Hi Einna, i’m so sorry that you are in so much pain, have to deal with the gods of health (well some of mine think they are gods) and have to manage so much. It really is hard for you on far too many fronts.
    I haven’t been able to walk easily for nearly a year, but that was okay with them because I had a chronic illness! I share your frustration with the medical profession and have found that I need to be really proactive. I hate the ‘you have a chronic health condition’, shrug of the shoulders and pat on the shoulder approach. It isn’t good enough. They are there to help not victimise the victim by being unhelpful and on some occasions even counter productive.
    I don’t like to make a fuss and tend to keep smiling. I just thought that my brain fog meant I didn’t remember things properly and I relied on my doctors notes and knowledge until recently. After all they are human too and they have made some mistakes!
    Push harder, see a new doctor let them know it hurts. I make sure that everyone relevant is copied in on my doctors notes /tests, no excuses doctors, this is my life you’re messing with!
    You are paying these people to for for you! Be strong and know you are worthy of their attention.
    Take very special care of yourself. Then again maybe if we coordinate and all kidnap our doctors maybe someone will notice and pay attention to our demands? Oh that wont work I’d have to house and feed the blighters! Ava, 🙂

  • Eileen B moderator
    11 months ago

    You’re too funny, @ava! Thank you for posting such a kind and supportive comment for Einna. I agree that it’s important to be proactive and persistent in communicating with doctors.

    Many patients find it helpful to keep a daily medical log of some kind. Technology can assist, but with all the paperwork doctors hand out, sometimes an old-fashioned spiral planner/calendar works best. It’s a great way to track your symptoms or possible side effects, jot down questions you don’t want to forget, take notes while at appointments, and refer back to “what did that nice Dr. Jane say?” or “when was my last scan/test?”

    PsA is a lifelong battle, and you deserve a medical team that’s solidly in your corner and 100% up to speed! -Eileen, Psoriatic-Arthritis.com Team

  • Leanne Donaldson
    12 months ago

    Wow @einna ! That must be SO frustrating! Communication is the key to quality care, both between you and your doctor, but also between the various specialists. Laughing at you about brain fog…? That’s insane. There are many studies done that link psoriatic arthritis and mental heath issues, such as depression and “mental clarity.” Clearly, mental clarity and brain fog are the same thing. You may consider printing out the following articles and seeing if you doctor would be willing to read them. Here is one which cites “official” studies done on the link
    https://www.psoriasis.org/advance/link-between-psoriatic-disease-and-mental-illness

    and many others discussing “brain fog” or “mental clarity” from a patient perspective

    https://psoriatic-arthritis.com/living/battling-brain-fog/

    https://psoriatic-arthritis.com/living/brain-fog-in-college/

    https://psoriatic-arthritis.com/living/pain-brain-fog-stole-words/

    But I hear you, the bigger issue at hand is the lack of communication between your doctors leading to anger and frustration. Some areas (like mine) have doctors who all working within the same larger group (such as a hospital group). For example, all my doctors work with a larger group St. Elizabeth, my endo, primary, rheumy, gyno, are all part of the larger St. Elizabeth group. All of it runs on the same computer system (My Chart) and everyone has access to all lab results, diagnoses, and communications. Maybe you have something similar in your area? I know it would be a giant pain to try and find a new team of doctors, but in the long run, it might be worth it.
    I really hope you are able to get some relief soon, in one way or another. Next time you pour a glass of wine, save one for me! Stop back and let me know how you are doing today 🙂 -Leanne, (Psoritaic-Arthritis.com Team)

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