Home from the ER

Last night (the 10th) I thought i was in for a great night! I was in pain like usual, but it was the night of the Tony Awards, my favorite awards show of the year! I was so excited to see all the performances! I was so happy to see Audra Mcdonald win, her performance that night in Porgy and Bess was chilling! Plus i loved her shoutout to Will Swenson (PRISCILLA!!!) and her daughter which was so touching!

After the awards i tried to sleep but couldn't get comfortable. The pain was different than usual too. It was very electrical. I felt like someone was stabbing me with a tazer in my back. I couldnt have any blankets or even a sheet touching me. My parents drove me to Jefferson ER at about 1:30 AM.  The first good sign was when i told the triage/check in nurse that i have Reflex Sympathetic Dystrophy she says "RSD oh i know that well". Since most doctors don't even know what RSD is i was impressed that she knew what it was being a triage nurse. They thought there was a rare chance and a very rare chance that i had an abscess from the injection on Friday. the only way to show it is an MRI and at Jeff thats a 15 hour wait, but they could do bloodwork that can show a higher chance of it. So i got the bloodwork which only showed low hemoglobin and they gave me diluadid which made me feel loopy and tired but much better pain wise. We decided to not get the MRI and they discharged me at about 6:30 AM. Going to go call my pain doctor. All for now.

day after injection update

today i woke up tired but virtually pain free. i took it easy most of the day.  then i showered where i began to feel some leg pain but thought it was due to the shower and sensitivity to touch. i felt better after the shower as i got dressed.

i then went to joanns where i got a really awesome umbrella. when i got home i ate dinner and actually had a second serving of pasta for the first time in a long time.

now my legs  hurt really badly and my back is hurting too. im really disapointed cause i was hoping for more days of relief.

Update After Today's Injection

Yesterday was hell. Had so much pain. Not an inch of my body did not hurt, including my eyes. Plus i got a phone call that my doctor's appeal to the insurance company did not work either for the ketamine. I almost went to the hospital that night, but figured they wouldn't do much if anything.

This morning I had a 10:30 arrival time for an epidural steroid injection in my lower back. I was in lots of pain and nauseauted when i arrived. My nurses name was Bernadette, which since that's one of the main characters name in Priscilla, that made me smile. They got the IV in me, and gave me nauseua medicine under my tounge. I first saw my doctor's colleague who was mostly explaining and getting consent for the procedure. Then my doctor eventually came by to say hi to my parents and I. He knows im in lots of pain and can tell that im in a lot worse shape than when i first me him back in late July/Early August. He suggested a doctor for me that is like a physical therapist but a doctor that can maybe teach me some light stretching exercises so my muscles don't atrophy.

Then i was taken back for the procedure. I was sedated. I had some strange dreams, a little bit about Priscilla, and other random stuff. It felt like a long sleep. In fact usually i wake up on my own at the end of the procedure, but this time they had to call my name a couple of times. I felt pretty good painwise, but i still can't shake the anesthesia fog. In addition to anesthisa, they had mentioned they had given me a bit of ketamine (no where near the doses i would have gotten on Monday), so maybe thats why im still loopy and tired. My mom and I are trying to appeal ourselves now to the insurance company.

Denial

Today is a bad day. I got a phone call from the secretary at my pain doctor's office. The insurance has denied my request for inpatient ketamine for Monday or in general. My doctor is fighting hard to try to appeal it but the secretary does not seem to optimistic. I'm still having my injection on Friday. The MRI didn't show anything. My iron levels are border line low, and i cannot take regular iron pills as they make me sick. It's most likely because i dont eat much and when i do, i don't eat much meat or leafy greens. Eating is just too painful for me. I've lost a lot of weight.

I'm probably going to have to quit my summer internship. This is really upsetting to me. I was looking forward to learning a lot and having a good time and having something to put on my resume. I cant really leave the house now except for doctors. I'm trying to figure out how to do normal things like shower because i can't stand for more than a couple of minutes without extreme pain. To make things worse the water of the shower coming down makes the pain worse due to the sensitivity to touch.

Looking forward to the ketamine treatment was something that was giving me hope. Now i don't know what to do. I don't want to give myself too much hope that the doctor will be able to appeal it becuase i know hes a great doctor and he will do everything possible, but the insurance company is stubborn. I don't want to set myself up for disapointment again.

life with rsd is filled with disappointments and today was no exception

today a bunch of fellow nick adams and Priscilla queen of the desert fans organized and held a super fan day for nick. i knew ahead of time id probably be in too much pain to go, so i didnt buy a ticket to the show. it hurts because i wanted to show nick my appreciation and see the show one more time before it closes on the 24th of this month.

my pain is really bad today. it hurts in the area of the scar from December's three day epidural and my legs. i showered and got dressed but didn't go outside except once to let the dog outside and that was for 2 seconds. its raining so i hope thats the cause of my flare. i hope i feel well enough to go to my internship tomorrow.

in other more happy news one of the fellow priscilla fans mentioned earlier found out i wasnt feeling well and that despite having seen the show five times i didnt have one of the ping pong balls they throw during one of the scenes and mailed me one. it was such a great act of kindness. thats all for nown

Change in plans for today

Saw my rhemotologist (sorry not that great at spelling) yesterday. She has treated me over the years for carpal and cubital tunnel. In addition, she got me into my 1 appointment with Dr. Schwartzman within months instead of 2 years because they both work for drexel. I wasn't expecting her to do much at this visit. She advised me to not get my injection today into my back cause she worried it would cause a possible spread of RSD and she said we should know for sure that it would be helpful first, so she ordered an MRI that i got also yesterday. She said if something like syattica shows in the MRI then i should reschedule the injection cause it would help that though physical therapy would probably help more, but i can't really do physical therapy due to  my pain from RSD. She also wrote me a prescription for a medicine thats like motrin but you take it once a day instead of 2-4 times a day. I'm going to call my pain doctor today.

return to blogging

i havent blogged in a while. my rsd has been flaring. i went to to the er last Wednesday and though they wrote me an rx for a couple of pain pills they wouldn't give me one in the er and they.discharged me crying claiming they cant and wont do anything. though they did suspect i may have syattica as well as rsd.

today i went to a small gathering and met two other people with rsd.

my back has really been bothering me. on Friday June 1st im getting a lumbar epidural spinal steroid injection. im waiting to hear about insurance approval on inpatient ketamine. if approved i will be admitted june 11 for 5 days. keeping my fingers crossed insurance will approve.