I have been struggling with my PsA. With an internist who diagnosed me running the show and a Rheumy who only saw me once giving me mtx and no one listening to my "hey guys needles give me tachycardias and i tend to throw up and faint in their presence i really can't give myself that shot" pleadings I felt helpless. And what does a mother do when she feels helpless well she pretends like everything is fine keeps going to the point of breaking and cries only when no ones looking...and then she crashes in a heap of pain and this is where things go so wrong they make a 180 and go right =D
I call the internist someone needs to see me now im in agony please get me into my rheumy he set my appointment for april 4th thats not soon enough something is seriously wrong. Internist returns call sign yourself into the hospital on Monday be there early i sent the paperwork ahead. Monday call hospital to find out the rheumy you see who also runs the floor at the hospital is heading on vacation for 2 weeks and there will only be random docs there...flip out on the innocent telephone answerer...call the rheumys office be put on hold for 45 minutes as you use the cell to call the internist back and throw yet another fit this time you throw a big enough fit and his secretary gives you the rheumys cell number for emergencies BWAHAHAHAH!
Get rheumy on phone ...hes seen you once met your husband twice and has had about 40 calls from the poor internist who is cluess how to treat you but he still pretends to not know who you are...tell him your going into the hospital when will he be seeing you? Oh was that panic in your voice dear doctor might you miss your vacation if I go in this sick my symptoms seem what oh extreme you say well yes they are my feet look like i blew into rubber gloves and pul them on as shoes...Oh a specialty rheumatology clinic you say will have a space in 3 weeks you say well i have a fever of 103...sure you can call me right back...Oh i go in tomorrow thats great ill be there at 7 on the dot thanks so much your my hero. hang up (ba****d)
Into the rheumy clinic i went...36 x rays...a set of ultrasounds on my shoulders hands hips feet actually every joint done by the tech then repeated the next day by the resident Dr. and then AGAIN later that day by the Chief Dr...a bone density scan and an MRI. wow this place is serious on tests i wont go into the blood, urine and the rest but they were thorough!
Adding in heat therapy once a day and ergoterapy for my hands and physical therapy and this awful ick foot spread wrapped in plastic wrap twice a day my schedule at the hsopital was full to the max. The wiped my meds replaced them all and did a week of shots in my feet, hips, shoulders, and hands using flouroscopic injections (in person thats shots of cortizone done with x ray guidance)
Not only did i have to stay nearly 3 weeks but i have arrived home with a physical therapist who comes twice a week once for my movement and once for my hands, i get a house hold help paid for by insurance to give me a bit of a break during the therapy and twice a week for extras (holy cow) and suddenly my doctors are actually taking my calls personally =O You mean I really was sick? who'da thunk it? GRRRRR!
The best part is the clinc i was in started me on Humira shots every 2 weeks! The med i was told would take at least 2 years of others before the insurance would approve (neener neener) They adjusted my other meds MTX still as a weekly shot lowered my cortisome to only 5mgs added a tummy med and a new pain med and vitamin D and folic acid...they were not playing around and honestly i havent felt this healthy in years!
I still hate shots and the hospital decided to put the fear in my file officially having put me on heart monitors when they did the xrayed shots I OFICIALLY have trypanophobia ..something I have knows for decades but now that its in my file it means i will never be made to give myself a shot again and no ones going to make my hubby do it either i can go to the doc every single monday and if they are closed i can go into the er MUAHAHAHA seriously it took me having a tachycardia throwing up on the nurse fainting waking up and crying for an hour for them to actually see the fear is more then an I dont like shots..but what the hey I am now getting the care i need with more understanding then ever from the people who are giving it. It takes all the power in my to force myself to go every week for the MTX shot and every second for the MTX with the bonus of Humira and blood taken but I am forcing my fear down with the remember last week when you couldnt pick up your daughter lets not go there again mommy guilt which is probably the only thing that would actually get me to go each Monday.
But all in all I am finally getting the care I needed even if it was all by accident and I have a file of tests so large that the insurance guy I saw threw up his hands and has finally given up on trying to make me make do with what they allowed and are finally giving me and my family what I need.
Thanks to EVERYONE here on PsA for giving me the strength to keep going and for all the wonderful encouragement. YOU are the BEST!