So I see my Rheumy Thursday and everyone will be proud to know I'm starting medication. I'm not sure what, I have thousands of questions for her.
I did see a Dermatologist to inquire if the "dandruff" I've always had could be psoriasis. He said yes and also I have teensy pits in several of my nails.
I was already convinced the diagnosis was correct, but being stubborn needed this to seal the deal.
I'll post what I end up taking and how it works for me. Thank you all so much and I look forward to remaining a part of this amazing support system!
If you don't hear from me for a while it just means I'm GREAT and chasing three little boys ;)
Thanks. I feel so hopeful now. I've learned to cope with the pain so much, today I was thinking about each joint that actually hurts. It's more than I consciously realized b/c I had just coped and modified my life so much. I'm so very hopeful now!
michael in vermont said:
congratulations, treatment will make all the difference!
Maemae, I remember the feeling of having a proper diagnosis so well. I felt like I could put the mystery ailments to rest, the past behind me, and move on.
I’m so happy for you. Keep moving forward!
So glad you are starting meds I felt it was a huge relief to get a diagnosis…being bought up with a disabled sibling we were never ‘allowed’ to complain about pain, feeling ill etc.
So getting your head round the issue that yes you do have a serious problem and yes you do need aggressive treatment is a great big step in the right direction…I sincerely hope you will soon be feeling better and able to continue chasing round after your youngsters
Excellent! Good to hear that you have made progress and will be starting some form of treatment. Whatever treatment you start on, just remember that they all take time to start working.
Awesome maemae! As I said, a second opinion never hurts :) Now I can tell you for real "You have PSA honey" ! :D. I am happy that you are going to get the treatment needed. And if the ride in the roller coaster gets rough, you know where we are . Stay strong, the chosen treatment may work or not and then, back to the drawing board it is, I am not going t sugar coat it, but, if this is the case, eventually you will find the right combination :)
So excited that you're moving forward with treatment! You sound so hopeful now, which is wonderful. You shouldn't have to live with so much pain! We'll be here for you whenever you need us!
Guys, I just can't believe how much pain I've been suppressing thinking "I can just live like this, maybe one day it will go away." But I recalled last Christmas when we went to DC to see the National Cmas Tree (we had just moved here). I couldn't WALK THE THREE BLOCKS to the restaurant.
I've been recalling little things like this from the past year and just shaking my head that I was so limited. SO HOPEFUL NOW!!!!!!!!!!!!!
I don’t think you’re alone in that, we’ve all been there…its ok I can do this its not so bad! Lol Glad you’ve got hope, usually things do get better x
Maemae said:
Guys, I just can’t believe how much pain I’ve been suppressing thinking “I can just live like this, maybe one day it will go away.” But I recalled last Christmas when we went to DC to see the National Cmas Tree (we had just moved here). I couldn’t WALK THE THREE BLOCKS to the restaurant.
I’ve been recalling little things like this from the past year and just shaking my head that I was so limited. SO HOPEFUL NOW!!!
First, please know I am NOT anti-doctor, I adored working alongside docs as a nurse. Very rarely met a bad one. But this Rheumy needs a lesson in listening and processing what she hears.
Review: Last week I went to Rheumy to let her know I had other joints hurting. Bad. She said I probably have PSA and should think about MTX. I tell her I'll consider it, but need to research more.
Present day: I research more MEET ALL YOU AMAZING PEOPLE and in the meantime and hurting about 10 fold what I was last week. So I'm obviously needing no more convincing I NEED TREATMENT. I'm thinking she's gonna be like "Oh you poor thing, this is progressing so fast!" Nope.
"PSA usually doesn't progress this quickly, I think you have PSA but I don't think that's what's going on currently. You may have a virus of some sort causing the severe joint pain. We need to do a round of steroids to see if that helps."
REVIEW: I HAVE HAD A YEAR OF FAILED TREATMENT THAT INCLUDED STEROIDS
Present day: I bust out in tears. (not a cryer, by the way) "Doctor Anonymous I don't understand you. Last week you tell me I have PSA. A Derm confirms this and I'm hurting so much and you think I have a VIRUS NOW?! NO. NO. NO. No Ma'am. I do not have any more time to "figure out" if this or that will help. I have three small children who deserve a mother with more energy and less pain than this. And I am not interested in a round of steroids, which failed last time. I'm interested in TREATMENT."
That got her attention.
Blood work. I start Steroids this week and Humira next Friday ;)
THE MORAL OF THE STORY IS. Once you've had enough, even if you aren't "a cryer" your heart will tell on you.
Maemae, my hat’s off to you. Well done. You stood up for yourself and for your family and you insisted on being given what is going to give you the best chance of a good outcome.
Many of us here wish that we could have done the same at some point in our journey. Bravo.
But isn't that untrue that PSA doesn't progress rapidly? Hell, Phil Mickelson said he went to bed and couldn't MOVE the next day, following just a little pain the day previous.
I felt it was a huge relief to get a diagnosis…being bought up with a disabled sibling we were never ‘allowed’ to complain about pain, feeling ill etc.