Pain Appointment Yesterday/ Wit

I had an appointment with my pain doctor yesterday. Well i thought it was with my pain doctor. We ended up meeting with one of his nurse practitioners instead. Luckily she is very nice. She will run things by my doctor, but the plan is for me try go through with the calmare in Rutherford as scheduled even though its not through them. Then i will meet with them after and see how i feel. If needed we will see if i need any other treatments in August, but hopefully I wont. They will also continue giving me meds as needed. I'm decreasing my topamax meds by 50 mg a day which is good because it decreased my appetite, increases my anxiety, and it can lower the effectiveness of calmare.

I also finished watching the HBO  movie based off the play i finished reading a few days ago, "WIT". It stuck to the play almost entirely, and both were very sad but fantastic. Audra Mcdonald had a role in the movie. I have now read two of the plays nominated for a Tony this year for best play (2012), one of which that won (Clybourne Park) and one that didn't (Wit). I didn't like Clybourne Park that much. I felt it was random and not really that funny at all, even though it was supposed to be. Wit was much better, even though it was sad, i couldn't put it down! I really got myself into it, and forgot about my problems while reading about the main character's life. If anyone is looking for a good play or movie, especially a sad one but one that makes you think i highly recommend "Wit"!

Now I'm reading one of Beth Henley's plays called "The Wake of Jamey Foster" I haven't gotten past the list of characters yet, so i don't know if i'll like it or not.

What i do while i'm in pain

Yesterday i was in lots of pain in the afternoon and evening/night. I got a couple of plays i had ordered in the mail. I was already reading Clybourne Park, but that was upstairs, and i was in too much pain to go upstairs so i read one of my new plays i got in the mail, called "Wit". "Wit" was also nominated for a Tony for best play this year but lost to Clybourne Park. I read the 86 or so page play in about an hour. It was sad, but really good. I just couldn't put it down. It made me temporarily think of my pain less while reading. I also listen to music a lot while i'm in pain. The key is when i can to try to distract myself from the pain. However, when the pain gets super bad, its hard to focus on something like a book.

Recent exciting news!

So despite yesterday being quite sad because of the closing of Priscilla Queen of the Desert and me not being able to attend, i have some exciting news. One, my blog post about broadway was chosen to be featured on Everything Broadway's Website from a contest. It was not a luck contest, but a contest where they read the entries and chose one! I feel so proud! they said on facebook "We have chosen to use a blog written by Mary M. on our website. Her blog post will be published on our site tonight at 6pm EST. Those of you who submitted a blog post that didn't get chosen this time, we will hold on to them to possibly use at a later date. Thanks for submitting everyone! "


the link is http://www.everything-broadway.com/#/blog/4560640752.

also i tweeted to Jack Curry of the YES Network because he mentioned on Twitter that he was at the RSD walk.  I said " thanks for supporting rsd ive had it for 8 years!" and he said back "@Purpleviolin91 You're welcome. My wife has it, too, so I know you what you're going through. Stay strong." This is really cool even though i'm a Phillies fan not a Yankees fan. He has done a lot of work, even getting Pitcher David Robertson to do a PSA for RSD http://www.metacafe.com/watch/8615982/the_yes_network_and_yankee_david_robertson_on_rsds/

I'm in some pain again, but im still looking forward to more treatments.

my first Calmare Treatment

Yesterday I traveled with my parents to Rutherford, NJ where the Giants and Jets play which is about two hours away from my house each way. I went to see Dr. Michael Cooney who is one of seven certified persons certified in the country to perform Calmare therapy. Calmare is not just for RSD. In fact pretty much  if not all of the clinical studies have been on Post chemotherapy cancer neruopathic pain. However, he has had success with RSD patients with this treatment. First he found where the most painful areas of my body were by touch. The idea is to not put the electrodes on the exact spots of pain, but around them in a certain way that i can't remember exactly why but will post in a future blog because i don't want to provide a guess or a wrong answer, especially for those of you that might be interested in this treatment who have RSD. Of course being touched in painful areas like my back was painful, but i knew it was needed for the treatment. Electrodes were put on my back but not directly on the one spot that really bothers me. Interestingly enough he found the exact spot that hurt me without me pointing it out to him in no time at all. I guess because i said it's been bothering me since the three day epidural i had and also he's treated a lot of patients like me. Then there were a few placed on my feet. He then turned on the machine. The thing is you are supposed to feel the electric current (it's  not really painful but it does feel weird), but you aren't supposed to have it so strong. In other words, don't think that its time to be tough and say i don't feel it when you do and think that if it's stronger to the point of pain it will work better cause its not really true. A bit into the treatment my sensitivity to touch started being reduced. At the end which was about 45 minutes on the machine my overall pain went from an 8/10 to almost a 5. he was wiping the excess gel from the electrode on the bottom of my foot with a paper towel and before i most likely would have screamed from that paper towel, and i could feel it and it hurt a little, but not that bad. I made it home in storms and it stormed all night and my pain went up to about a 7 but i avoided taking perocet and that's amazing considering it was storming, and I had the long car trip because long travel always makes my legs and back hurt.  I even practiced my violin last night for the first serious time since coming home from school in the beginning of May. I will get more sessions starting July 9th. It will be every day for about 10 days, with Sunday off. Hopefully this will continue to help and be the answer i've been looking for. I think it will. It may not be a cure, but it will defenetely help the point where i can attend school this fall and function and not be bedridden!

Broadway's been on my mind

Been having trouble posting this blog post from a few days ago. It's been having weird formatting. hopefully this will work.It's a modified version of an entry i sent for a blog contest for Everything Broadway.  For the past few days, my Broadway obsession has been growing strong and stronger. I decided that this summer from this point on, (perfect timing since it was just the Summer Solstace) pretty much every book I read will be a play or at least theater related in someway. I finished up "The Glass Menagerie" by Tennessee Williams. I had never read that play before, but I had read and loved "A streetcar Named Desire" by the same Author. I loved this play almost as much as Streetcar. It was so good! IT takes a lot these days to keep my mind interested in a book, but i finished it in two sittings! Of course the play wasn't the length of a Harry Potter novel, but it kept my attention more than a Harry Potter novel ever did.

I also started "Clybourne Park". I have it on interlibrary loan loan from the library until the 6th of July. It's pretty good so far. I'm reading it because it won the Tony for best play this year and I want to see what the hype is about. Of course, it's probably a lot better to see it live, but i'll read it because i will probably not get the chance to see it at least on Broadway. Perhaps someday i'll see it in a regional theater or a high school production.

I saw the movie Rock Of Ages on opening day. I was prepared to be disappointed because i had seen and loved the musical and I knew they were going to change the plot at least slightly because Catherine Zeta Jones' character (the Mayor's wife) did not exist in the musical. In addition, I was prepared for Tom Cruise to be another Pierce Brosnan in Mamma Mia who could act but not sing. It turns out, Tom Cruise actually wasn't that bad a singer, but they changed the plot a lot. In addition, I think they should have given the character Sherrie more dancing to do because the actress who plays her comes from a dancing background, but she is also a good singer, but you could tell she isn't used to singing this style and it showed. Mary J. Blige was decent as Justice, but Michelle Mais on Broadway is way better. I laughed so hard during the musical, and i don't think i laughed once during the movie. I just hope that people who don't like the movie won't think the musical is bad and will be turned off from seeing the musical now. 

My RSD pain has been flaring. I went to Rutherford for a treatment called Calmare yesterday. More on that in a future post. Broadway has gotten me through so much of my worst pain days, especially Priscilla which brings me to a sad point. Priscilla is closing this Sunday. I will not be able to see it one more time (a 6th time) due to pain. It's the happiest musical ever! Some musicals you go for the art and beautiful music (ie Phantom of the Opera or Les Miserables) but some musicals you go for happiness such as Rock of Ages or Mamma Mia. Well Priscilla takes the prize of those types of musicals. In better news of Priscilla i recently got a pin in the mail that i ordered from ebay that is Priscilla themed. I will post a picture in this post. That's all for now

Hope about Sunday

Sunday my favorite broadway show ever, Priscilla Queen of the Desert is closing. I really want to see it for my sixth and final time. This show means so much to me, i can barely put it to words. Listening to the soundtrack has gotten me through my toughest days. I don't know how i'll feel on Sunday, so i dont want to buy a ticket just yet. I hate this about RSD. I just want to buy a good seat to the matinee (though it closes at night), and go. Sigh. At least I'll always have the memories. This fall my dorm room will be dedicated to Priscilla. I'm buying things and people are mailing me things to accomplish this. I'm so excited to decorate, but i must get at least a little better first!

Weekend/End of the week Update

Wednesday was a pretty good day for me. I was almost pain free! I was so happy! I was practically dancing in the shower and actually enjoyed my shower instead of just getting through the tasks of a shower painfully because I have to in order to be clean. This relief continued into Thursday. I went to my grandparents in the afternoon. I was eating too! They took me out to the diner that night and i ate a 3 egg omelette plus some french fries! Later i ate some ice cream!

Friday i saw Rock of Ages the movie with my friend, Katie. I was feeling pretty good. The movie was disappointing though. The musical is a zillion times better. I can't believe how much they changed the plot. If you see the movie and don't like it, don't think you wont like the musical! Then that night i started to have pain.

Saturday morning i wasn't in too much pain, so I went shopping with my mom and dad. I got some headphones and a swimsuit. Then when i got back i was exhausted and the pain started. It was terrible. I was really upset because i was hoping the relief was long lasting.

today i'm in pain again, but not as bad as last night. I had a lot of trouble getting up this morning.  I'm hoping that next weekend i will be able to see Priscilla one more time because it is closing next sunday :(. This show has meant alot to me and it would be upsetting for me not to be at one of the last two shows. I also have a consult for a new treatment called calmare in Rutherford, NJ on Friday. I'm hoping it will work out.

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.