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