Our BLOGS section was shut down some time ago. If you have blogs though, you can still access what you have written through MY PAGE (That’s your page, of course, not my page … never mind, you know what I mean.)
Here is the blog I wrote one day after realizing that my twenty years of undiagnosed PsA had resulted in more than just joint damage:
http://discussion.livingwithpsoriaticarthritis.org/profiles/blogs/psa-wrecks-your-body-messes-with-your-mind
How about you? Can you relate?
Seenie, I completely relate.I don't intend to slam individual doctors for their shortsightedness, nor do I want to exclude men, but this is a message about/for women in particular. We often do NOT get heard. We relate stories about ourselves which are all-too-frequently blamed on hormones, malaise or just, well, whiny-ness. Particularly by our PCP/GPs.
How do we change things so doctors stop denying their patients' lived reality?
I agree, we women don't get heard--and funny, sometimes by female doctors! The craziest observation my internist ever came up with is that maybe my bra was too tight. What?! Did you really just say that??!! I had dealt with weird chest pain often and strange heart palpitations--I called them heart explosions because that's exactly what it felt like and one cardiologist initially diagnosed me as having a heart attack from my EKG in the ER. But the odd chest pain was almost constant, and each time I mentioned it, my doctor shrugged it off until finally she made the bra connection. OMG! I finally came to my own conclusion that it was some sort of PSA symptom--it hasn't been bothering me since before I started Enbrel.
What a great blog seenie!
I have been relatively lucky in that I was diagnosed fairly quickly although I had fleeting symptoms 25 years ago - ra was ruled out as I didn’t have any indications in blood tests so I was sent on my way. I really relate to this treatment when I hit menopause - palpitations - take beta blockers, anxiety and panic attacks take ad’s, high blood pressure - take medication. I had a great gp and asked why don’t I take hrt instead? I don’t deal with hrt… Finally saw a specialist and got hrt and got well from being virtually housebound. Still remember vividly just not being taken seriously and not even listened to - so frustrating!
Definitely - It doesn't help that my current GP is actually a PA. The actual GP is great - I love her, she's aware of my PsA and takes it into account when I see her. The PA, not so much. I asked her at a previous visit if my drastic increase in weight should be a concern - I'd gained a good 9 pounds in a month and it seemed weird when I hadn't changed any eating/exercise habits. She immediately started in on how to eat healthy and that I should do cardio - no checking meds or asking about any changes.
It wasn't until several weeks later that I'd realized it was from my NSAIDs that I'd just quit taking a week before that appointment on the advice of my Rheum (side effects, blah blah). I didn't magically gain 9 pounds in a month, I retained 9 pounds of freaking water - and I didn't do anything different to lose it. But regardless, it totally messed with my head and I was depressed for days. (Really, if I think too hard about my weight it totally bums me out, but there's not much I can do about it I've decided, other than keep doing what I do - eat as well as possible, exercise when and how I can - the rest of it can shove off, lol).
Oh yes, my mind has definitely been messed with! I'm someone who finds it helps to get things off my chest. If I feel angry and upset and don't say so, it eats away at me. I wrote this letter several months ago, before my PsA diagnosis, so some of the details are out of date, but the general tone and gist of it remain
I LOVE your open letter, flow. What a well-thought-out expression of what I feel as well.
Thanks for posting it!
Of course! If you gained nine pounds, it's your own fault! What other explanation could there be? *wink*
SubliminalFlicker said:
She immediately started in on how to eat healthy and that I should do cardio - no checking meds or asking about any changes.
Oh yes, Golfnut, all of my problems were treated independently too. It wasn't until the erosions were visible that the dots got connected.
Mind you, there is no logical connection between toenail fungus and a transitory joint complaint. Or body aches and itchy skin. Unless your a doctor who knows your stuff.
Yes, it's a strange creature this disease of ours!
Golfnut said:
I really relate to this treatment when I hit menopause - palpitations - take beta blockers, anxiety and panic attacks take ad's, high blood pressure - take medication. ... Still remember vividly just not being taken seriously and not even listened to - so frustrating!
Situations like this make me so pleased with my medical care. I haven’t had truly horrible medical experiences since I was in my twenties. My diagnosis and treatment for an autoimmune disorder has been fairly smooth, thank goodness.
Thank you for sharing this.
flow said:
Oh yes, my mind has definitely been messed with! I’m someone who finds it helps to get things off my chest. If I feel angry and upset and don’t say so, it eats away at me. I wrote this letter several months ago, before my PsA diagnosis, so some of the details are out of date, but the general tone and gist of it remain
true.
What a phenomenal letter, flow. And how sad that so many on this site could have written the same letter to their GPs, and even their first rheumatologist.
flow said:
Oh yes, my mind has definitely been messed with! I'm someone who finds it helps to get things off my chest. If I feel angry and upset and don't say so, it eats away at me. I wrote this letter several months ago, before my PsA diagnosis, so some of the details are out of date, but the general tone and gist of it remain true.
Flow, I'm not so sure we aren't sisters separated at birth. I have a similar letter I which I wrote to myself to let off steam at my now ex-rheumatologist ... you could have written my letter and I yours :-)
flow said:
Oh yes, my mind has definitely been messed with! I'm someone who finds it helps to get things off my chest. If I feel angry and upset and don't say so, it eats away at me. I wrote this letter several months ago, before my PsA diagnosis, so some of the details are out of date, but the general tone and gist of it remain
true.
Jules, I’m fairly certain that flow and I were separated at birth. How can this be?
We must all be related .... one great big PsA sisterhood.
Thanks Seenie. I sent it to the GPs, the practice manager and The Lancet. Sadly the GPis/PM didn’t reply and the Lancet declined to publish it!
Seenie said:
I LOVE your open letter, flow. What a well-thought-out expression of what I feel as well.
Thanks for posting it!
Triplets?! 
Apparently!
You both reckon it's worth a DNA test? We could ask the Jeremy Kyle show?
Nooooooooo, ANYTHING but Jeremy Kyle!
Wow, great letter, flow! I can't believe they didn't respond to that--well, I can--it's par for the course! Glad you let them know how you felt and ended up with a good replacement doctor!
Thanks Grandma J. 
From time to time I think I’ll take the complaint further… And then I think life is short and I need to focus on NOW, so I don’t…
Grandma J said:
Wow, great letter, flow! I can’t believe they didn’t respond to that–well, I can–it’s par for the course! Glad you let them know how you felt and ended up with a good replacement doctor!
