Long Awaited Update!

Sorry for not blogging for so long! been busy! I saw my pain management doctor the morning of my 21st birthday (well actually the nurse practitioner although she did go back and speak with the doctor to confirm our plan cause he was doing procedures for the day). We decided i would do aqua/pool physical therapy 2 x a week until i have to go to school. I"m a bit nervous about it, but it's worth a shot. I will also see them again once more before i go back to school.

Also on my 21st birthday, I had a gluten free red velvet cake from Sweet T's Bakeshop in Haddonfield, New Jersey. I had had a gluten free cupcake from there before, and it was good and i wanted a gluten free cake, so i ordered from them. If you are interested their website is http://sweettbakes.com/home.cfm. One of the ladies that owns it/works there was an intern for Buddy on the Cake boss for the first two seasons of the show, so they are really good at decorating. I will post a picture of my cake in this post! We also went out to dinner where i got gluten free penne in almost an alfredo type cream sauce, which was so yummy i ate the whole thing! It didn't taste like typical gluten free pasta, in fact at one point i was nervous that perhaps the waitress didn't hear me say the gluten free part, but she charged us the $1 extra for gluten free and i didn't get sick, so it obviously was just very good gluten free pasta.  I'm also uploading a picture from the dinner of me, because i actually bothered to put on makeup and dress nicely which is hard to do with the pain.

Saturday, i went to NYC early with my dad. We took NJ transit to Penn and then the subway to 42nd and the S subway shuttle to grand central because my roommate was taking Metro North to Grand Central and i met up with her. Then my roommate and I went to TKTS and bought half off tickets for Mamma Mia for the 2 PM show. In between, we went to the Westway diner which was yummy and reasonably priced and apparently they had filmed a few episodes of Smash there. Then we went to a theater souviner store where i got the last Priscilla mug they had and then we went to starbucks and then Mamma Mia!

I had my first real "Drink" at Mamma Mia that i bought at intermission. It was called Dancing Queen. It was grape vodka, pepsi, and some granider syrup. I enjoyed it though i sipped it and since it was in a  souvenir cup gave my dad the last few sips when he met us after the show. I didn't want to drink too much because of  the medications i'm on, i just wanted to symbolically celebrate my 21st. Funny thing was i had my ID all ready and out to show him but the guy never asked, perhaps he saw my id in my hand and figured if someone had an ID in their hand they wouldn't have one that showed an age under 21 to show them or I just looked 21.

Then my dad and I headed back to penn and all the trains back to where we needed to go were delayed due to "police activity". I knew that probably meant a train had hit someone. We got on the 4:54 at 5:45ish. Only reason we got seats was when they annonced the track i ran ahead of my dad so fast i beat him by a few minutes and saved us seats on the train. The only time i can run fast even in pain is in penn station, i get an adreneline rush like no other. lots of people had to stand in the aisles. the trian kept stopping in between stations. Apparenlty amtrack (even though we were on NJ transit, they share tracks and Amtrack gets priority) had hit a person in Edison, NJ earlier that afternoon so they were down to one track and AMtrack got priority. We didn't get to our station till almost 9pm and it usually only takes at most an hour and 20 minutes. My pain was really bad on the train sitting there for that long.

Today my pain is so bad it took me until almost 10:45 to get out of bed this morning.

A simple way to potentially make a huge difference in my life!

as many of you know, i was denied by my insurance company  (Aetna) my request and my doctors request and appeal for inpatient ketamine infusions. These infusions could potentially be very helpful to me, a lot more helpful than the outpatient ones that are miraculousally covered partially for now. There is a petition going around that needs signatures that will be sent to aetna encouraging them to cover the treatment. They claim its experimental, but its been around for a while, and has helped many with RSD/CRPS. Amazingly, in most cases they will cover an invasive spinal cord stimulator surgery which has led to problems for lots of people and is obviously risky and expensive since it's surgery, but not this. In the higher coma doses that aren't allowed in the US, there have been some problems, but not that many if closely monitored at the doses id be getting. please sign! 

Change.org|The Proven Petition Site

Last night

As mentioned before, yesterday's pain was pretty tolerable. However, in the late afternoon i started to get some neck and upper back pain. I usually don't have pain here.  Then it started to spread to my lower back and legs and feet! By 9:30 PM it was excruciating! It's so hard to maintain hope when the pain goes form not that bad to bad so quickly! I took some meds and i'm feeling better today though i still have pain but it's not as bad today.

I have an appointment with my regular pain doctor on my 21st birthday (this friday the 27th) at 9 AM. Yes, i'll be spending my birthday at the doctors, but hopefully ill get some good news somehow.

A much Better Update

Yesterday i had an extra day of calmare because the other day was was excruciating. It turned out i was going through withdrawl from both Topomax and Cymbalta. The withdrawl pain was the worst ever! I fell again too. Plus i was off my prozac, so the depression was making the pain worse!

The calmare was very helpful yesterday. I went from a 7 and a 6 to a 1 and a 3 (1 in left leg 3 in right).

I can do more calmare if i choose, but next week i'm dogsitting for my neighbors. So i will play it by ear and call if i need it again.

This  morning my pain is about a 1-2 range! I'm extremely satisfied with that!

Calmare/ Flare Update

Last night i had a bad flare. So today we worked on fixing it. I tried two different lead placements with very little improvement. By the time i got home today, I was in agony. I was laying down on my parents bed, and tried to get up to go to the bathroom, but i fell. Luckily i fell on top of the carpet and a dog bed. I didn't trip, but instead it was the shock of the pain when i stood up and put pressure on my feet that caused my legs to give in.

My mom and I called Dr. Cooney's office twice. He first suggested a heating pad, but i can't have that on me cause of the sensitivity to touch. He then told me to take a perocet and then we will work on the flare again tommorow. I'm supposed to not take cymbalta tonight, because it can interfere with the calmare. I'm also not supposed to take my morning prozac tommorow for that same reason. Hopefully all will go well, and i will be back to great progress again! 

calmare day 7 update

im now undergoing day 8, but yesterday was day 7. i went down to a 1/2 out of ten. after i got home i went shopping with my mom. it was so hot out!
in the mail i got my room assignment and a bunch of broadway stuff i won on ebay.
i had a flare at about 4 pm in my left leg. it went to a 6 out of ten but thats a much more tolerable flare than pretreatment. it went away overnight and i woke up in a 2 out of ten. all for now.

Calmare Day 6 update

Yesterday was my 6th day of calmare. I came in with a flare, most likely from the rainy weather. My pain when i came in was at a 3 in my legs and a 4 or 5 in my back. My upper back/neck was bothering me, so we put a lead to target that. I also had a longer session with the machine to try to take care of the flare. I left with a 2 or 3 out of ten pain level.

Then my dad and I went to visit my 105 year old Great Grandmother (his grandmother) in a nursing home in Queens. She is almost deaf so it's hard to talk because you have to yell, but she is in really good shape mentally, especially for her age. She made me laugh because I said i had no boyfriend when she asked, and she didn't believe me saying you must have one for every finger. Finally i decided to make my fave Broadway actor (Nick Adams) my boyfriend because on my computer i had a  picture of him and I. I showed her my computer and she figured out that its a cool machine and that i probably do homework on it and that it had pictures on it. She liked my "boyfriend" liking his name, and saying he was handsome.

Then we traveled to my Aunt's and Grandmas in Long Island. I had a mild flare in my right leg last night, but it's gone now. All for now.

Calmare Days 4 and 5

Yesterday was Day 4. It went well. By the end of the session I was down to about a 4, but the right side still hurt the most which is interesting because it used to be the left side because that's where the original injury was. At night i was down to a 3.

Today was day five. It went even better. I came in with some right hip and leg/foot pain, but we focused on my right side today. Instead of one of the lead being put on my lower back, that lead was placed on my right side so i had an extra one on my right side. By the end I was down to a 2 out of ten. My back hurts a little now and my pain has risen to a 3/4 in my back but it's still at a 2 in the legs. This is fantastic for me.I even went shopping for a bit with my dad.

I also haven't taken one of my pain meds in 24 hours, topomax. I started the week by skipping my morning dose but still taking the PM Dose. Last night i skipped the night dose as well. So far so good because i was on a low dose to begin with.

Tommorow I have session 6. Afterwards i'm planning on going to my grandmother and aunt's house in Long Island, NY.

All for now.

Calmare Day 3 Update- A Fantastic Day!

So had session 3 today of calmare. It went really well. By the time i got home, my pain level was at about a 4 out of ten.  Keep in mind that's after a long cobmmute down the Jersey Turnpike. it remained that most of the day. It spiked a bit in my back when i lifted some heavy containers (stupid me!), but my legs remained at a 4! I took a shower tonight and i have to say it was probably the first time i actually enjoyed  a shower in at least a year! I could shave my legs and use shower gel on a poof and the water actually felt great! I'm very pleased with how much the sensitivity to touch has decreased! I didn't expect that to happen! I was only expecting pain relief. In fact, it lowered the spiked back pain back to a four! Now its almost bedtime, my worst time and my pain's at about a 5 out of ten. I'm really pleased! And i blowdryed and straightened my hair! I haven't straightened my hair since the fall of 2011! 


In even more fantastic news, i'm now a blogger for the website everything-broadway.com you can read two of my posts on http://www.everything-broadway.com/#/blog/4560640752. They also have other really cool things on their site. It's an up an coming site, so its still under development (the site). It's unpaid, but its almost a dream job for me!

I also finished "Angels in America" Part 1. It was good, and I read in one sitting "The Laramie Project". The Laramie Project" was sad, but fantastic!

Tommorow is session 4! I'm looking forward to making more progress!

Calmare Days 1 and 2

So this is an update after days 1 and 2 of calmare therapy for my RSD. Yesterday was day 1. The treatment wasn't painful. I arrived with a pain level of about an 8-9. I left with a lower pain level, the exact numbers of which i can't recall. When i got home i was fine. However,  a few hour's later, i was sitting in the chair and my right foot started feeling like it was hooked up to the machine (electrical sensations), except unlike the machine, it was extremely painful. I called the office, and they suggested to try a heating pad for 15-20 minutes. I could barley feel the heat. Eventually i gave up on the heat cause it wasn't helping at all. Then it eventually went away.

This morning i woke up with less pain. I arrived early this morning  for session 2 with a pain level of a 7-8 of 10. Some of the electrodes were placed in different spots today to target where i was hurting more today. NOTE: the electrodes don't go directly on the painful spots but around them in a certain way.

By the time i left this morning, my pain level was a 5 or 6 in my back and left leg/foot, and a 6 or 7 in my right leg/foot.

I went to Goodwill with my mom after i got home where i got four playbills, and a couple of books. It was a good trip! Now i'm resting. I'm trying to take it as easy as possible. I'm about to continue reading one of the plays my theater professor that I will have this fall for theater history reccomended for me. It is called, "Angels in America: Part One: Millennium Approaches" I've only read the first scene so far (read it during calmare), but so far so good.

Tommorow i go for session 3.

Repercussions/Reflections

Today i'm in lots of pain. I guess it's from all the activity i did the past two days. However, it felt so good to have little pain and be able to do those activities with friends and family. I felt almost "normal" again, something I haven't felt in years, especially this summer. Sometimes the pain is worth a couple of normal days  with family and friends. Of course, the thunderstorms last night didn't help with the pain either.

It is great to think that Monday i start my treatment and if the treatments work, which i'm very optimistic about, i could potentially do more "normal" and fun things, without having as many repercussions. Now mind you i probably will never run a marathon (though it's not really an interest of mine anyways), but i just want to be able to go shopping and hang out with friends and get through normal daily activities. In other words, i don't' want to spend my dad in bed and in the house. I want to go to classes again in the fall.

Though i'm positive and optimistic about the treatments, i also don't want to get my hopes up to high. A cure would be ideal, with zero pain, but even if my pain was at a 4 or lower on a daily basis, i would be extremely happy. It is nice to picture a life where i can make plans and keep them because i don't have to worry about canceling them last minute cause of a pain flare. I suspect i may have occasional pain flares, but i  hope and think they won't be as often and severe as they are now.

I've been asked what i would do if i ever was cured or went into total remission from my RSD. Honestly i don't know. I would still take it easy, but not as easy as i take it now ( i would actually go out of the house more), but wouldnt start running. I would just try to be as happy and enjoy life as much as possible because it would be a gift from God and not to be negative, but i wouldn't know how long the gift would last. I would still want to hold a fundraiser and help others with RSD because its a vicious disease that took up so much of my life. I would want others to be aware about RSD and those affected by it to hopefully someday have the chance to be pain free as well.

Once again. I do though have to keep reminding myself to not tell myself that this treatment is a 100% cure. I don't want to tell myself it won't work or think negatively because that's not good thinking and nothing good comes from that. However, if i have my hopes up way too high then i'll just get too disappointed if things don't work out. Ill be optimistic and positive but a balanced positive.

Happy 4th!

Happy 4th!
Last night i reconnected with a friend from high school, Erin. We walked to the high school in my town. This was the furthest i had walked in a long time. Then we sat on the field to view the fireworks show. It was really great! I just wish i had brought a chair, it might have been friendlier to my back. I was in lots of pain when i got back, but it was well worth it.

Today i went over Erin's house and then another high school friend, Rachel came over and then we walked to Rachel's Aunts house (a few blocks away) and had a barbeque. Then my grandparents came over my house after my dad picked me up for more bbq.


It was a taxing two days on my body, but it was well worth it for friends and family. I am now paying the price, but glad that I start calmare on Monday. I will leave you with a few pictures of the fireworks.

More info on treatment/ Fun Mail yesterday

As i've posted, i'm getting a treatment called Calmare from July 9-19th in Rutherford, NJ. here is an article you can read for more information about it. http://calmarenj.files.wordpress.com/2012/06/201-health-magazine_2012.pdf
I had one trial treatment and it helped. I'm optimistic that the rest will help even more! someone that has had this treatment in Staten Island is having a online fundraiser to help pay for more people to get treatment. Right now people have only donated $15.00. Please consider donating a dollar or two. The link is http://www.gofundme.com/t7pwo

In more exciting news, i got Priscilla things in the mail from another fan! I got a playbill with a piece of paper saying that Ellyn Marie Marsh (An awesome Swing/Understudy was playing the role of Cynthia that night), three brochures, and a couple pieces of confetti from the show fell out from the envelope! photo is posted above this paragraph!

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.