greetings and salutations to old friends and newbies... Have I been missed? Where you at Bob- my brother in arms-... Yes been awhile. membership is now renewed for life time and wanted to touch base. Warms my heart seeing you all still out here fighting the good fight. and goodness, the amount of new members is incredible. Glad to see word is getting out. I have a lot of catch up to do so figured I start here.
Currently, the tapering of prednisone has created some challenges. No one should be on Pred for 35 yrs. I was. I will be on it forever but just now hoping for a maintenance dosage, forever. Long term use of pred has shut down adrenal glad which is your cortisone maker. We all know how important Cort is. Pred will knock its socks off. IT did.It has. U suffer. when reducing it, if you can, the medical issues it "masked" come out ten-fold.
Last summer 2020, four months in and out of hospital with.. MRSA,PG, CELLULITIS, was where I said "time for my paper work to be updated". Last Will, POA, etc papers all done then. Really thought I was gunna buy the farm.
After all that, I developed RA... now psoriasis has me under its spell. this i believe this is what the pred was masking for a long time. Psoriatic Arthritis. PSA. The fun part is watching your finger nails corrode.. split. crack turn color.. bleed under the nail.. Am receiving acthar and otelza and in months, noticeable improvement. The rheumo knew his stuff. however ins co refused to pay. You gotta get the right doctor folks. I would have this guy's baby if I could.
Now tapering to the lowest dosage of pred in my life ( 7 mg daily) he hopes to jump start the adrenal glad. film at 11.
Next issue.. the head scratcher.. bleeding. veins popping. in ankles... its a monthly ritual.. and get this.. it occurs.... when removing socks. like a gyser, usually its one vein in ankle..at the ball joint .
it heals with direct pressure. and I am good for anothen month. yep. like clock work. recently, I had pops at both ankles and left arm. talk about a WTF moment.. can U imagine not enough hands to stop the bleeding??? have you ecer seen blood shoot out of your body in three places at same time? Felt like I was in SCI FI flick. Even Hithcock would faint.
no sense going to ER. They are too stupid to understand..tried it tho, they fixed me.. sent me home. while in waiting room for ride home, I bled out in wheel chair. Nice fix at 2 a.m. think Covid, open blood wound..in a hosptial waiting room..... anyone coming to help??? dont hold your breathe. wheeled myself back in OR pissing blood from ankle.. try wheeling yourself with one hand.
so I deal with it like I did this morning . coming out of shower, towel drying the area... pop. but wait... you see the squirt hit the wall, but cant really tell the location is until you move hand around down there.. is it one or two places now? should I say oink oink, cause damn I am a stuck pig at that moment. let that image set it.
I am not a newbie. JOined the site in 2019. been long time sufferer of IBD. --35 yrs. Perm. ilio.... facing two more surgergies...
This site is where you can ask " have you heard of this before"... "does this happen to others"?
And Yes I am on blood thinners for DVT. But you know what the real kick in the cajones is? the inability to understand people talking to you. Inflammation can attack any organ in your body.
Having Crohn's doesn't help. It attcked cochlear. both ears.
This site, the people, is just inspirational. Am adding my two cents. You newbies, don't be afraid to ask. This place and its people are priceless. become a member , pay the price before YOU really pay the price. .----Warrior