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.'