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.