A look back

Last New Years Eve I had a massive pain flare. So bad that i called the emergency line, which at my pain doctor's means having to call the ER and ask for the anesthesiologist on call, which may just be a surgical anesthesiologist with very little training on pain management. By some miracle the one on duty got ahold of my doctor and had him call me back. Yes, on New Years Eve. It was one of the sweetest things a doctor has ever done for me. He couldn't do much, but tell me to take an extra pill and rest and hang in there. But the fact that he took time to call me on a holiday, meant a lot to me.

2012 was an interesting year. I thought my pain would improve, but it's worsened. I tried many treatments in 2012 including calmare which i thought held great promise, because at one point during treatment i was down to 2/10 pain level. However, i then started to withdrawl from cymbalta and topomax which is no joke. It is so painful. Then i had the hope that I would get inpatient ketamine, but my insurance keeps to this day denying it. I had outpatient ketamine a few times, the most successful was a series of 4 days at the end of August/beginning of September that gave me a month of decent relief with my average pain level being about a 5/10. Then that faded. I thought i would have to drop out of school, but i made it. Instead i'm transferring to Rutgers Camden in 2013. I will be going part time.

2012 did have some great memories. My favorite was going to see Priscilla for the fifth time and attending the fan/cast party i was invited to. It was so much fun. I also had a blast watching the Tonys even though i was in a horrific pain flare, i would not go to the ER until I saw Audra Mcdonald win and give her speech. I'm glad i did hold out, because her speech was amazing. Then i got to see Audra perform in Porgy and Bess!! I also got to go to Ghost the musical closing night!

I've met online many with RSD this year. They are my support system. It is great to have people that know exactly what i'm going through. I also am grateful for those that read this blog and those that don't but still support me weather they have RSD or not.

Here's to hoping 2013 will be better!

A Post Christmas Update

Christmas Eve was very painful for me. Luckily i rested most of the day and put my tens unit on for the family party and got through it. On Christmas Day, my pain wasn't as bad. i wore my tens unit to my grandparents house for the family party there in the afternoon/evening. However, as soon as I got home and took off the tens unit, I started to flare.

Today is a miserable day. I'm in lots of pain. I called my doctor. He wants me to get more outpatient ketamine next week, so i'll be getting more next wed, thurs and fri (2nd-4th). He also told me i can have my tens unit on as much i as want, as long as i dont fall asleep overnight with it on.

Tonight is really bad due to the weather. It's been rainy and snowy all day. It's now heavy rain. this is not good for my RSD.

going to rest tomorrow as much as possible. Friday I may see a friend. On the weekend i may visit with my grandparents.

ketamine days 1 and 2

So today and yesterday i got IV ketamine for my RSD/CRPS, and i still have one day left tomorrow. Yesterday i arrived, and they had me registered and all, but they had no official orders/script for my ketamine, so they had to call my doctor (one of his colleagues was covering the hospital those days, he was at a satellite office, and he faxed the orders. Then i had to wait for pharmacy to mix the ketamine. after my treatement, i was being transported in  wheelchair to the lobby and outside to my dad's car by a volunteer and they had dogs in the lobby everywhere. It must have been some kind of dog therapy session for the holidays. One big dog came right up to my wheelchair and let me pet him, he was so cute!

Yesterday i was so tired, i slept most of the day and night. This morning i slept for at least an hour or two of  my treatment, which normally i sleep 20 mins max of the treatment. I was just that tired. There were lots of people getting blood transfuisons today, and they are allowed to eat, and the lady next to me had a cheesteak sandwhich at 11:30 with fries that smelled so good, and i wanted to eat so badly. I didn't finish till 12:45 and then i didn't get into my dads car till 1:20 because transport took forever to get a wheelchair up for me. 

I'm very tired. My RSD pain is for sure less. Its at about between a 2/10 to a 6/10 usually at about a 4-5/10. 

really struggling

i'm really struggling tonight. I had a mental breakdown from pain and anxiety which led to more pain and anxiety! I just need to finish this semester so badly. I don't know why i put so much pressure on myself to do so well, i need to realize that I have RSD and i still almost always manage to outdo what i think i'm going to do. Yet that's still not good enough for me.

I cannot wait to get ketamine on Wednesday. I just have to hope that it is as effective as it was last time, giving me a months relief, even if it's just  few points on the pain scale relief.

Tomorrow night i have my night class final and then Tuesday i have my history and mainframe finals and then Thursday night i have a java takehome final due, but cause of ketamine i will have to have it done before then.

Pushing through the pain can sometimes be worth it

i woke up in a massive amount of pain this morning. Due to this, i slept until 10:00 AM. Luckily i didn't have class until 11. I ate a quick non-nutritious breakfast of candy because i didn't have time to get eggs from the cafeteria, and I have to eat something with my medicine to avoid getting sick. I didn't want to go to class, but i knew it was the last Monday of actual class, so i pushed myself to do so. I got to my java class. We were competing our individual robots in robocode. My individual robot was not as good as the robot I created for my team which made it to the top 2 of all the team robots (the top 1 was another from my team), but i figured i'd do my best. The first round, mine made 9th of 14th place in a smaller virtual arena. The second time we competed all of them was in a larger arena and I placed 2nd of 14. And then the next round of the top 7 from that 14, i got 7th. I was satisfied. I actually had fun in class. And it was a great distraction from the pain.

And, Wednesday is an optional make up day for that class, and he's not holding class that day. Plus, the final is apparently take home, so this will be the last time i will see my class.

Later today i have a meeting with a counselor at 1:00, then a tutor from 4-5, and then a night class where i have a quiz from 5:45-8:25. If i get through that night class, i will be estatic! It's not the content, but the timing, cause my pain always flares at night.

Tomorrow I have history class and my last mainframes class. Wednesday i have a tutoring appointment and then i'm heading home for a few days. Just have to get through the rest of today and tomorrow really, cause the tutoring appointment on Wednesday won't be bad.

an all nighter in the ER

well i pulled pretty much an allnighter in the ER. I went to my night class took a test, and then we had a lecture afterwards. During the lecture, i felt my RSD pain, but also in a fog. I felt like i was on an other planet mentally. It wasn't fatigue, or distraction, or boredom with the material. It felt like i had taken some kind of narcotic/sedating drug, but I hadn't. Then i walked back from the library (Where my class was) to my dorm, and was out of breath for some reason. I still felt weird and kept feeling weirder. I started feeling weaker and having tingling and numbness. I knew something wasn't right and it was beyond my normal RSD Pain. I know i desrcibe my RSD as burning, but this pain truley felt like fire and had no achy quality to it. I was to nasueauted to take my perocet. I called public safety at a bit past 12 AM and they took me in the ambulance, of course public safety made them also pick up another girl in another dorm who was stable, but had a fever  and a probable stomach flu instead of making her wait for them to take me and come back. (The paramedic kept apologizing to me, she said she would make the girl wait, but public safety didn't want them to do so). Now i'm exposed to those germs, lovely. My doctor was pretty nice, she asked me if i had color changes and sensitivity to touch and about my RSD (i said no to color changes and yes to sensitivity to touch and explained that i rarely get color changes with my RSD). For an ER doc she knew a decent amount about RSD. She then asked if i wanted anything for pain and i said yes. I Wasn't going to ask, cause i didn't want them to think im drug seeking, but i'm glad she asked. They took some blood work, but did not start an IV. My potassium came back low, so i took two huge potassium pills, and she gave me the perocet cause i was feeling less nauseuous. Then cause i didn't have an iv, the nurse injected tourdael into my arm for pain, the shot hurt more after cause it burns for ten minutes than it did during the actual needle part. It did help. Then i got discharged at 5:39 AM. I didn't sleep cause this old lady kept yelling NURSE HELP! and then she would stop and id fall back asleep and then she would start again.  

Of course now my friend texts me and has tickets to ROck oF Ages Broadway tonight, and i've been dying to see a broadway show latley, and i want to see that show again too! But oh well. Poor timing. 

A November Update

School has been stressful lately. Been struggling with my java class. It stinks cause its my major, so it makes me feel very hopeless. This has of course led my RSD pain levels to escalate. I started a new medicine two weeks ago that was originally for Alzheimers called Namenda. That was a Friday. Then that Monday i had  a small panic attack about a java assignment and then that night i started having excruiating pain. That whole week i could barely go to class and missed most my classes because of the pain. I could barely walk. That lasted until Friday night when i increased per the nurse practicioner the namenda. Then i was fine for a day and the pain returned. Its very hard to deal with school and this pain.
Tomorrow i have to head back to school. Its going to be a rough journey back.

A Long Awaited Update During a Storm

Sorry i haven't been posting. I've been very busy with school and such. I also update my tumblr much more frequently which is http://purpleviolin91.tumblr.com/.

Right now Long Island and really most of the North East is in the middle of Hurricane Sandy. This storm has really spiked my RSD/CRPS. Last night i was in agony. I went out to grab breakfast this morning and it wasn't too bad walking there, but walking back was worse because though the rain's not too hard, the wind had picked up and was blowing the rain all over. Luckily classes are cancelled for today and tomorrow. I'm one of 50 students staying in my dorm for the storm, the rest went home.

My pain has been bad in general, but I have been coping. I'm having a fundraiser for RSD at my school starting Thursday November 1st. I'm having a jar at the HillWood Commons information desk and a jar at the Learning Support student lounge to collect money for the RSDSA. I'm also having an online page at first giving at http://www.firstgiving.com/fundraiser/marymccabe/rsdawarenessmonthliupost2012 for those that don't go to my school and wish to donate. I have a facebook event page as well to remind people https://www.facebook.com/events/430548006992403/.

Ketamine Day 4 Update

I would have posted sooner, aka yesterday, but i spent most of yesterday afternoon and evening sleeping. I was exhausted. Anyways, yesterday was my fourth and final day of ketamine. I arrived with a  headache, so one of the nurses asked the doctor that was there (mine was still on vacation, so it was one of his colleagues), if i could have something in my IV for the headache. I was given and NSAID called Touradel (Spelling)?. It did help my headache.

The night before i was up till 1 AM not able to sleep due to various reasons, mainly cause of my naps. So i was exhausted that morning so i did sleep for about 45 minutes of the treatment. I did have some leg cramping, but it went away on it's own.

Now that I'm finished ketamine, my pain level is at about a 5-7 out of ten with ten being the worst. Before, it would rarely dip below a 9. Hopefully, this relief will last.

i was very tired, but here is my final photo from treatment!

On the way home from treatment, my dad and I stopped for Slurpees at 7-11 which was yummy. Then i had mashed potatoes for lunch, and then i went to Shop Rite with my dad to pick out cereal to take with me to school. I move into school tomorrow (Sunday). By then i was exhausted. I'm pretty much finished packing though! That's all for now!

Ketamine Day 1 Update

Today I had my first of what will be 4 days of outpatient ketamine IV infusions. I arrived at about 7:30 AM. My doctor was not in today, and he hadn't put in orders for my ketamine, so they had to get another doctor to write the orders for not only my ketamine, but the versad they give me to prevent hallucinations and to relax me as well as the zofran to prevent nausea. But, they were able to do so. Luckily, they got the IV in the first try. I came in with pain at a 9 out of 10 with 10 being the worst pain.

I tried to relax as much as possible. I wasn't that sleepy. I listened to show tunes the whole time. I had also worn my I heart Priscilla shirt for good luck. By the time it was complete, and they took out the iv so i could leave for the day it was 1:15ish. My pain was down to a 5 out of ten. A transport staff member took me down in a wheelchair to the lobby to my dad's car. We stopped at McDonald's on the way home cause i was starving because i have to fast for the infusions. my pain is holding at between a 5-7. Hoping for the best that it stays at that range! It's starting to spike a bit in the neck and lower back, but i'm going to try to use my TENS unit to keep it under control. Trying not to take perocet.

iv for Infusion

fluids and ketamine hanging 

me towards the end of the infusion (Very tired and not looking my best, but listening to music)

my hospital id bracelet for the next few days even though i'm outpatient 

Update after pain management appointment

I saw my pain management doctor today. I'm moving back into college on the 2nd, so i don't have much time until school starts. Therefore, I will be doing outpatient ketamine IV infusions for four hours each morning next Tuesday through Friday. In the mean time, my doctor is going to try to get insurance approval for inpatient ketamine, but if approved (which it hasn't been in the past), i can't have it done till Winter Break. I would miss a week of school if i tried to do it not during break and i couldn't even try to keep up with the work cause i would be so drowsy and out of it from the continuous ketamine, I wouldn't be able to complete homework. As much as i'm looking forward to going back to school and i really want to, i almost wish i wasn't so that i could get the better treatment (inpatient).

New helpful device

Today i broke down with my mom and we got a cane for me. I wont use it all the time, but for when i'm in terrible pain (like now), for going to and from class, for long walks like in the city and stuff, etc. It's not the prettiest cane in the world, but it's a cane. Speaking of the city, im hoping to be able to make it to NYC this weekend to see a Broadway show or two. Hoping to see Porgy and Bess and meet Audra Mcdonald.  I adore her so much, and would love to see her perform in person and actually meet her!!!!

Pain's been bad. I've still been going to physical therapy though. I just wish it would calm down a little. Like i said i want to be able to enjoy NYC even if i stay in the hotel room most of the trip and I reduce my walking greatly and I bring the cane for when i do walk. In addition, I really want to be able to attend school this fall.'

cant sleep

im in too much pain to sleep. im very tired, but the pain is too strong. i took a perocet but so far it has only made me more tired and not relieved the pain at all. i even tried a midnight snack. sigh.

At Home TENS

Today i got an TENS unit to use at home. i can use it twice a day for 30 minutes each session. I used it once so far with 2 electrodes on my lower left side of the back and 2 on my lower left leg. It helped my back,  but not my leg. It also feels good for the 30 minutes its on.

I had an awful time getting up this morning due to pain. It took me over an hour to get out of bed. My legs are really bothering me. Hopefully this TENS unit will start to help more as I use it on a more regular basis. Tommorow I have Physical Therapy again. Hopefully it will go well.

the TENS unit

Physical Therapy Session 3 Update

Today was session 3 of PT. We used TENS and heat on my back first which felt amazing. Then i went in the pool and did almost every number of every exercise this time. The one i struggle with most is like step aerobics but in the pool step where i have to step up and down from it. Then i went to a friends house where we chilled and watched TV.

Now i'm in agony. I couldnt stand my pj pants so im wearing shorts. I dont think the pains from PT i think its just an RSD flare. I'm getting my own TENS unit tommorow. I took a perocet about 2 hours ago and i'm waiting for it too kick in. This pain is really bad though. I can't see my doctor until the 22nd. To make matters worse, my 105 year old great grandmother has just passed away and im most likely going to be in too much pain to attend the funeral. I was in too much pain tonight (and knew i would be) to attend The In bloom Fundraiser Concert at Birdland in NYC where my favorite actor Nick Adams sang a song at. Speaking of Nick, I got a whole bunch of Priscilla stuff in the mail from Tom and Keith. They had been gathering it since i couldnt attend Nick's Super Fan Day (June 3) or Priscilla's closing (June 24th). It was so sweet and kind of them to send this stuff to me including a personalized autographed Nick Adams photo that they framed and decorated. I'm putting some pictures of the package contents in this post. The framed pictures will inspire me to keep going.

cups and ping pong balls

super fan day stuff

nick picture

personalized autographed nick picture

Posse member button (already had the other one)

I'm typing this blog on my new netbook, that weighs less than 3 pounds which will be much easier on my back to take to class. In addition, im getting electronic versions of some of my textbooks or at least an extra copy to keep at home so when i travel home i dont have to lug it home.

last night and today

last night was excruciating. i was screaming and crying in pain. i was super close to asking my parents to take me to the emergency room.

today wasnt much better. i somehow made it to my first pt session where i had to be touched for evaluations of strength. i was pretty weak and given a few home exercises that i have no idea how ill do. tonight is really bad again.

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. 

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.

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.