update after a rough night

last night i had a lot of back and leg pain. I was pretty good for most of the day. I didn't do much, though i visited my grandparents who were happy to see me, but that involved a short car ride and sitting down in a chair and talking. I was holding my dog to feed her and i just couldn't do it. She only weighs about 8 pounds or less, but i had to pass her over to my dad. We have to hold her to feed her and 20-30 minutes after cause she has a pouch in her esophagus where if she's not held in an upright position during and after feeding for 20-30 minutes the food will go in the pouch and she will regurigate the food and can inhale it again and get pneumonia and die. Dogs of all sizes can get this issue, we are just lucky that she's a small dog. Anyways then i just laid down and my legs started to hurt. I couldnt stand my pajama pants which weren't heavy material (they were cotton) and were not tight. I ended up wearing shorts to bed. I had some discoloration in my pinky toe which is above the text of this post. I ended up laying in bed, taking pain meds and listening to music (mostly show tunes of course!)

In more exciting news, yesterday i decided to write on facebook to one of the stars of Rock of Ages the musical (NOT the movie), Michele Mais. She plays Justice, the same role that Mary J. Blige plays in the movie. I told her that she does a much better job in the show than Mary did in the movie and that the show is much better than the movie. I'm friends with her on facebook cause i added her right after seeing the show back in January of my senior year of high school (2010). I was thinking if she did write back she would comment directly on the post, but she actually wrote on my wall, Mary...YOU ROCK MY WORLD!!!
Many Thanks for your kind words -so happy you enjoy my work and our wonderful show... I'm so proud to be a part of it!!!
Loads of Love -xoxo-Maisey

This was so cool for me. 

All for now. 

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!