Fall Update

I have been awful about keeping up with this blog. My apologies. I am now attending online college classes through Duquesne University towards a degree in Computer Systems Technology. I take 1 course every 8 weeks which is considered "half time." My first course "Adult Transition Seminar" (writing, study skills, grammar), ended last night. My final essay still had to be graded (it was submitted last night), but I am expecting an A-, at worse B+ for the course. I am starting the "preweek" assignments for my next course (intro to info systems design) in the next couple days, they are due the 19th which is the official first day of that course.

Pain has been up and down. Goes down for a bit then flares. I try to enjoy the lower pain periods while i can, though of course it is always devastating when the pain rises again.

I've been playing my violin again. It is a great stress reducer.

I'm going to try to keep up with this blog more!

A Good Day in NYC

hello. First let me bring you all up to speed, since i haven't posted in a while. I received IV ketamine last Tuesday and Thursday. This has been helping keep my pain levels down. However, I have a sinus infection now, got diagnosed with it on Friday by my primary doctor and got antibiotics for it, but had symptoms of it most of last week, but at first thought it was just allergies.

Yesterday i traveled to NYC. I wouldn't have gone due to the sinus infection, but i already had a ticket for seeing "kinky Boots" the musical for the 2nd time, and I had paid for the ticket myself and didn't want to miss it and waste the money. Plus i was feeling a little better from the antibiotic, and thanks to the ketamine, my RSD wasn't too bad. I arrived at around 11:05 AM. I went to the Housing Works thrift store on 9th avenue. Then I walked around a little bit. I went to this cookie place i love called Schmackarys that is on 45th right by 9th which was right by the theater. As many of you know, i'm gluten intolerant, so you may wonder what i would do in a cookie bakery. Well, they have at least 1 gluten free regular cookie flavor daily (that rotates, because they actually have 36 or so flavors in total of all cookies, and they have ten or so flavors a day, so all the cookies actually rotate, but i think they have the basic chocolate chip everyday). In addition, their macaraons are also gluten free, and they also have rotating flavors for those. In the past of the regular gluten free cookies, i've had the lemon poppy twice (this is my favorite so far), and green tea (this is also yummy, but different). Yesterday they had sweet corn, which i'm sure is delicious, but didn't really appeal to me. So instead i went for the macaroons, which was the same flavor as last time a cranberry walnut or something like that, which is yummy.

Then i went to Kinky boots. I was in the back row of the theater. I could still see. The only annoying part was behind the wall i guess were the lighting people or something like that, and they talked loudly during the whole show, so during the pauses of the show and when the actors weren't talking loudly or singing, you could here these two guys talking.

Then i went to stage door. One of the ensemble members, Ellyn Marsh, had told me last time i went, that she would take me backstage next time i went. However, she and many others had a rehearsal for next week's Easter Bonnet competition, which is a event where the ensemble members of each bway show create a skit and compete against the other shows. They charge admission to the event and the money goes to charity. There were these two little girls that were cousins that were so hyper (gosh if i could only have a little bit of their energy). They were saying that last time they saw the show, Billy Porter (one of the stars), had said that next time they came he would take them backstage. I thought they were joking, but one of the girls parents was there, and confirmed it. Well Billy came out and there were not many of us left, because he had taken a long time to come out. He told them about the rehearsal  but obviously he couldn't break these girls hearts, because they wouldn't understand. So he said i will take you quickly, but he kept telling them they had to be very quiet due to the rehearsal. Then this other girl that was between me and the girls and i asked if we could come and he said quietly. He could only show us stage left, because of the rehearsal. It was still pretty cool.

I had gotten a gift card for Ellyn to the cookie place, because i know she likes it, but i didnt know what kind of cookie she likes. Since i didn't see her, i gave it to Billy to give to her. She tweeted me a thank  you! She also facebooked me saying she will take me backstage next time for sure!

I had a blast! The show was even better than last time! The vocals are incredible!!! I love the songs so much, i can't wait till the soundtrack comes out! (May 28th).

I then caught a train home. Weird thing was, this lady said excuse me, excuse me to me, and at first i thought she perhaps wanted the seat next to mine, but i saw she was in the seat across the aisle from me, but then she said,  you look just like my daughter, but she's much older, and she proceeded to show me a picture. All in all it was a great day! Now i'm exhausted and sore, but not too bad considering!

update on today's procedure (lumbar epidural steroid injection)

so i had my lumbar epidural steroid injection today. My arrival time was 7:30 AM so i get there at 7:25, i get registered at 7:35ish and told the lady how nauseuous i was. I think i scared the registration lady, cause shes like if at any time you need to go throw up, please go to the bathroom over there, or even the floor, but not on my desk. I told her i'd be fine, but i tried to hint so she would get me back to preop sooner. Then i waited and waited. People that registered after me were being called back before me. Sigh. Plus there was this old guy whose wife was having some kind of procedure and he was waiting for her to be done, and he apparently had had an epidural before and started talking to these women about how he got chemical meningitis from it and how awful it was. This was great for my anxiety, not.

Then i finally got called to preop at about 8:15, 8:20ish. They put in my IV. The nurse kept saying did i hurt you (before she had it taped up), and im like not really cause it didn't hurt that bad, and then i add its in though right, cause ive heard i hope i didn't hurt you when they have to remove it and restick me  many a times, but she said its in, she was just concerned, because where she placed the IV was a bit far from the numbing injection she had given me. 

Then my anesthesologist comes in who was my old pain doc, and since ive had so many of similar procedures before, and he knew me, the consult was 30 seconds and most of that was getting my signature for the anesthesia permission. 

Then my doctor came in. He asked my mom and me if we did anything fun for St. Patricks day, and after silence he was like i guess you stayed local? and i was like I had a lazy day which was a glorified explanation of what i did, cause i was so lazy. and did nothing. We agreed we might do more ketamine when summer comes. 

Then i was taken back. I woke up very tired. Then i felt pain in my left knee that kept spreading up and down my left knee. They gave me some ginger ale, apple sauce, and a perocet. I left in lots of pain.

I came home and slept. The perocet eventually kicked in. Im a bit sore now in my back, but overall not too bad. Sorry this was so long. thanks for reading!

i got to educate someone about RSD yesterday!

 I arrived to my class early because i wanted to turn in the paper copy of my hw and leave cause i was having a flare. I arrived almost an hour early cause i didn't realize how early i was. and there was a professor in the classroom and i asked if i could enter, and she said sure she was just packing up her things from teaching a class
and she noticed my cane
and asked about it in a polite way. and i said i have chronic pain, rsd and i told her a bit about it,
and she said wow, i have a cold/minor flu right now and thats bugging me, and i know thats nothing to what you experience and i can't imagine worse than that everyday. This was great cause i know ppl will sometimes be like oh ive had the flu i know what you experience. She realized that even her minor and temporary illness wasn't as bad as what we experience.
and she says i hope you get a miracle someday
and as she left she said ill hope for a miracle for you and dont give up!

a miracle of miracles (can i ask for one more?)

I went out to dinner with some Priscilla Fans/Posse members last night in Philly. They had traveled to see the show yesterday afternoon, and since i live so close, i met them for dinner. It was really fun! And my RSD actually behaved. I was reflecting on the train back (a 20 minute train ride) about how my pain level was at about a 2 out of ten and by that point it was past 7 PM and i hadn't taken my night time meds yet that i usually take at 5 pm! My pain went up to  a 5 later that night, but i didn't have to take my perocet. Today i'm going to see Priscilla myself, for the 6th time (1st time in philly/on tour). I'm going with my aunt and uncle. My pain is at about a 4 or 5 right now, and im hoping it won't rise, at least not till im home again. This show is my obsession. It has saved me from suicide as corny as that sounds (one night i was really down, so i watched videos about the show online and i listened to the soundtrack several times and that helped me).

A new Pillow

The past few days have been rough painwise. This has been particularly true with my neck. Yesterday was especially tough. I had been up to 2 AM that morning in pain. Then i made it through my 9:05-10:00 math class just fine, but was sitting in the lounge relaxing on my laptop until I started feeling immense pain. I would have left and skipped my last class, especially since the professor doesn't take attendance, but it's my hardest class (computer science). But i made it through.

I also realized that my pillow was not helping things at all. My mom went to walmart yesterday and bought me a new pillow. It really helped. I slept much deeper. And I woke up in no neck pain (only leg pain). The neck pain is starting to come back, but its nowhere near as severe as usual.

Class Day 1 and Ketamine day 2

Yesterday was my first day of class at my new college. Technically it was Tuesday, but i dropped my Tuesday/Thursday classes for ketamine. I arrived at about 8:00 AM. I had some tea at starbucks and browsed the web on my netbook. Then i had my first class from 9:05-10:00 AM which was Precalculus. My professor seems very nice, and the class is very small (about 13 students including myself). then i had a huge break. I chilled in a lounge, went to a convience store on campus, and then because the lounge was too noisy to start my math homework, I went to the library. I understood part of the new concept, but had trouble remembering basic algebra. Then i had my object oriented programming class from 1:20-2:40 PM. My professor is very nice. She seems like she is very good and explains things well. Then i took the train home. My dad was able to help me with my math homework. Overall it was a great first day. I had woke up that day in a 2/10 pain. I wore jeans to school, and walked a lot around campus and my pain only spiked to a 7/10.

Today i had ketamine. I slept most of the time. I'm feeling pretty good today, but VERY TIRED. I hallucinated a bit, i kept thinking the nurses were in the back room with me, but i would open my eyes and they weren't they were in the front room.

Ketamine Day 1

Well i tried ketamine again in a new chair this time. This chair was the same chair i was in back in August when it was more successful  I know it sounds crazy that a chair would make a difference, but the chair i was in the past two sets of three was so uncomfortable that i would come in with say a 6/10 pain and a half hour in, before the ketamine even came, just from sitting in the chair, my pain would be at least at a 8/10, and that doesn't happen when i sit at home, at least not in a comfy chair. My doctor kinda made fun of me though- he said about a half hour in when i was of course very loopy, so this is your chair should we mark your initials in the back of it or how about putting a flag on it to mark it as yours? Of course he had a smile on his face the whole time. I think he was just trying to get me to laugh. I was too loopy and out of it to laugh, but i did smile and say "Yep".
I left feeling pretty good, i took a shower because i needed one and its a good idea for me to shower when i'm in less pain. I have for the most part learned not to procrastinate on showers as much because if i wait, the pain will just get worse, thus making showers tougher and more painful. This led to a small spike in pain, but not too bad, especially considering the spike i normally get from a shower.
Today is an election in my town for a referendeom over more land with a tax increase (vote yes or no), my mom really wanted me to vote, and she has raised me and taught me the importance of voting even in elections that i feel do not directly impact me. Yes i don't pay taxes, but my parents do. Annoying thing was it involved walking across the street in the cold (at least the polling place was across the street at the elementary school art room), and standing in a huge line. I didn't expect such a huge turnout. And the machine didn't work right away, i had to push my vote ten times for it to show a green mark before i could hit record vote. It was kinda a trip down memory lane because we were in the art room of my elementary school, and apparently the same art teacher that i had in fifth grade (probably the third art teacher in that school i had), is still the art teacher now, cause i saw cards on the wall for her while i was waiting in line.
Tomorrow I start at Rutgers Camden. I have precalculus from 9:05-10:00 and then a break until 1:20-2:40 when i have object oriented programming and then i'm finished for the day. my dad's driving me in and i will get there at approximately 8 AM. Yes that's early, but at least its a ride versus the train.  I will take the train home.
On Thursday i have more ketamine and on Friday i have preacalculus and a second meeting with my new counselor.

Post 7th Block Update

home from my 7th block! this one was an epidural steroid block. It went well, and the doctor said that there was a lot of inflammation in my back, which he had expected, so hopefully the steroids will help the inflammation. Suppose to take it easy today! also i spoke to him about my vision changes that started the other day, he said it could be from the topamax, but he doubts it cause im on a low dose and its been a while. He says he has several RSD patients that have vision changes when they flare badly and its from the RSD, or so he thinks. He says if the pain improves after today's block, but my vision does not, then it could be the medicine then. 

Ketamine day 3

today was NOT a good day. my pain spiked so much. after iv fetanyl my pain went from a 10 to a 5, but the relief only lasted for about an hour and a half. My doctor was on duty today, so he spoke to me, and it seems he is really stumped and trying to figure out what to do next. The ketamine seems to help my upper body, but not my lower body. He decided to schedule me for another lumbar epidural block next Friday. Hopefully this will help, but in the past the relief has been limited from these.

Ketamine Day 1

Today was rough. I entered today with a pain level of about a 7-8/10. I slept a lot during the ketamine, and despite extra versad, was hallucinating. I was imagining dancing ice cream cones. Then i woke up in lots of pain in my left leg. The one nurse i told, kept suggesting i stretch it, so i did. Then she put a heated blanket rolled up to try to heat it, and it still got worse. She tried to help me walk a little bit to stretch it out, but it kept getting worse. I saw my doctor for about 2 seconds cause he came in the afternoon as I was leaving.

I came home and was a wreck. Not only was I in the worst pain i've experienced in a long time (a 10/10), i was having a mental breakdown. I was depressed and severely anxious. I've taken some perocet since, and i feel a bit better, but it's still off and on. I'm hoping tomorrow goes even better than today (i figure it can't get much worse).