update after pain appt

I met with the nurse practicioner. she was pretty nice. She texted my doctor who was in a meeting to confirm her plan. Her plan is to slowly incresae (as to avoid major fatigue side effect) my neurontin. i may get the 2-3 day inpatient epidural after winter break, but I have to call at the end of November to schedule for December. I actually can get another nerve block if neeeded over thanksgiving break. Hopefully the increased medicine will help me more. Soon i'm taking a bus to NYC and then the LIRR train. At the train station near my school, i'm getting a ride back to school from 2 friends because the bus times are inconvient and with my pain i cannot stand for at least 30 minues to wait for the bus. When im back at school i will unpack and relax for a bit before starting some homework.

RSD/CRPS update

last monday i had the worst pain flare ever. I was put on neruontin. It helped a bit for a few days. Today I'm also in awful pain. I was supposed to see my pain doctor tommorow at 8, but he has a meeting at that time until almost 1030. Problem is i have a bus back to school booked at 1120. i will therefore, see a nurse practiconer. im going to ask about getting the 2-3 day inpatient epidural over winter break. I just hope i can hold up until then. Somehow, im doing well in school academically, but its realy hard to maintain, as is my social life. im so tired right now but the pain is just too strong to sleep. i really hope the monster of RSD/CRPS is tamed soon for all those who suffer like me and those that suffer worse.

A Broadway and Pain Update

Well last weekend i went to New York City. I saw Priscilla, Queen of the Desert two nights in a row. The first night (Saturday) I went with my mom and my favorite actor in the show, Nick Adams, was out of the show for the night. His understudy was good, but its not the same.  However, Will Swenson totally stole the show that night. The cool thing was a gay couple got engaged on stage after the show.  I still think its cool that I was part of a historic moment like that. The next night, I bought myself a ticket to see the show again. This time Nick Adams was in it. He was amazing!!!!!! His energy was through the roof. Then i went to the stage door. I was first in line for the first time ever at any show (well other than when i went to a stage door a day i wasn't coming from the show). I talked to Tad Wilson, Ellyn Marie Marsh, Tony Sheldon, and Ashley Spencer. I also talked to Will Swenson about our mutual favorite football team, the Denver Broncos. Then Nick Adams came out and I took a picture with him. He was so nice!  I had had an outfit planned for the show, but i couldnt wear the heels because i had been walking a lot causing tons of pain and it was also raining.

Above is the picture of Nick and me.

Last Wednesday (the 17th) I received a nerve block procedure. I was supposed to get my left side of the back and left leg done, but the morning of the procedure, my right side hurt more so i got the right side done. The nurses at Cooper Pain Magmt and Cooper Surgery Center in Vorhees are so nice. The one nurse asked if one arm was less painful so she could put the blood pressure cuff on the less painful one. They also for RSD patients inject lidocaine with a small needle before the larger iv needle, so that the iv doesnt hurt as much. The whole procedure wasn't too bad except for that the first iv they had placed in preop had infilitrated. Bascially the needle slipped out of the vein and remained under the skin causing the salt water coming through the iv to irriate and remain in my skin. This was extemely painful. Of course at the same time, my blood sugar started to drop and i was dizzy and nauseuated. The anesthologist put in a new iv in my other hand and had me taken straight to the OR in a wheelchair (after puting on a "fall risk" braclelet). In the OR i was sedated for the injection in my lower back, and then i woke up in recovery. I instantly felt a warm sensation in the right leg that could be felt on the outside of the leg as well. My doctor said this was a good sign. I didnt feel any pain in that leg either.

The next few days i had periods of intense pain and periods of no pain and even twitching. Even though the pain was different than my RSD pain (instead of burning and constant it was a dull pulsating achy feeling) i freaked out. I called my doctor's office on Friday and he called me back ten minutes later. He said not to worry that the nerves are resetting themselves and this can happen during the reset process. He also is fitting me in on Thursday for another nerve block (I will either get the right side repeated if i still have pain there or get my left side done, i will decided that morning). He's fitting me in because hes nice and he knows Im moving back into college the 30th to help with the International students.

Today my left leg hurts a lot (too be expected since the left side wasn't done) and my right leg goes through periods of little pain and periods of no pain. However it seems that each day the periods of no pain are more frequent and last longer than previous days. Hopefully by the times classes start (sept 7th) i will either have no pain or at least have more managable pain. What i really need to do is exercise a few times a week, but right now its too painful to do so. Hopefully if the pain reduces from the nerve blocks i can excercise which will in the long run help the pain even more.

Long Awaited Update On My Health

Sorry I haven't posted in a while. Been very busy. This summer I saw Dr. Robert Schwartzman of Drexel for my RSD. He told me to get ketamine infusions. There are two problems with this treatment. 1. I'd have to be off all my depression and ADHD meds. 2. These infusions are not covered by insurance and are quite costly.

I wanted a second opinion on treatment. I saw Dr. Munoz of Cooper Pain Management. He said I will probably have to do ketamine, but he's willing to try injections and epidurals to at least help my leg pain which is worse than my arm pain. In addition, my backs been bothering me, so he sent me for a MRI yesterday just to make sure the pains not from something that can be treated. He was very nice and spent a long time with my mom and me answering all our questions.

I've also been on a gluten free diet for almost two weeks now. My tests for celiac came back negative, but my doctor thought i might have a sensitivity to gluten and wanted me to try the gluten free diet for 6-8 weeks. I already feel much better. Any time i've tried to eat gluten since then i've felt extremely sick. The diet is challenging, but since it makes me feel better, it's worth it. The internet is quite helpful for finding gluten free places to eat and foods to buy. The ultimate challenge will be at school. I will be eating breakfast in my room because I can get gluten free cereal such as most flavors of chex and also cooca pebbles. I will also try to use the stove in the chapel to cook a few days worth of meals at a time so I can keep them in my fridge and reheat them.

To keep my mind off my health, i've been listening to music and knitting. I love knitting Rebecca Danger's monsters. I have three in progress right now!

Happy Belated Easter!

Happy Belated Easter! I went home for Easter last Thursday afternoon. I had to take a bus, then two trains, and finally a fourty minute car ride. Everything went smoothly despite the bus being late, and the first train arriving at penn station late even though it departed on time. As soon as I left the LIRR on track 16, I noticied that on track 15 was a NJ transit train. I said to myself, i bet that's my train. However, there was no sign, and I didn't want to pay the $5 onboard ticket purchasing fee. I ran across Penn Station and bought an NJ Transit ticket, and wouldn't you know they announced my train was on Track 15. I had five minutes to run back across Penn Station to track 15 which is more near the LIRR and Amtrack sides. I still made it! Phew!

On Friday I went to the doctors. I had been having a mysterious blueish blackish rash like thing on the outer sides of both hands, and on the rear ankles of both feet, and my thighs. My doctor had no idea what was wrong with me. She ruled out cyanosis which is good, because that condition can be deadly. She suggested I call my rhematologist. My rehmatologist via phone said it could be related to my RSD, which is what i thought all along.

Saturday was my dad's birthday. I didn't get a chance to finish even one of his birthday socks, oh well. Maybe he will get them by June (hopefully if i dont get distracted with a zillion other knitting and crocheting projects like usual). I'm still working on my sisters scarf from last christmas (oops!), a baby sweater that will probably be for charity, mittens for me, 2 pairs of socks for i dont know who yet, and my mom's phanatic (from last summer oops!) among others. I didn't want to work on the heel of my dad's socks on the train, so I started a crocheted shawl.

Since i had to return to college on Sunday morning, we celebrated Easter on Saturday night along with my dad's birthday. My grandparents on my mom's side came over and we had ham, cole slaw, apples, potato salad, and salad. For dessert my mom had baked a cake.

Sunday I traveled back to school. Then I worked on my 8-10 page reserach paper for sociology on the gay rights movement due on Tuesday. I have a little over 8 pages. Then I sung at mass. My pain started really flaring during mass, but i made it through. I would have sat down, but most of the time I'm singing and standing.

My pain has been rough lately. The only thing getting me through right now is listening to show tunes, particuarally Priscilla Queen of the Desert.

Getting Through a Rough Week

This week has been awful for my pain. It snowed and rained on both Monday and Wednesday. By Wednesday night, I was in so much agony, i could barely speak. On Thursday I cancelled my tutor and missed sociology class. I did however attend music class. The other night, I found it hard to sleep, due to to pain. The only thing that helps with pain is to listen to showtunes, becuase they distract me for a moment from the pain.

On brighter news, I preordered the Priscilla Queen of the Desert Broadway cast soundtrack! I cannot wait to have it in my hands on April 5th! Speaking of that show, my wall dedicated to the show is complete

I really want to see this show! Thinking about maybe seeing this show, has gotten me through this week!

Spring Break/ Priscilla Queen of the Desert!

I'm on Spring Break! After last week, I really need this break. I had a midterm in political science last Monday as well as a test in sociology and a quiz in Music 2 both on Thursday. However, my break hasn't been all relaxation. I revised an english essay and wrote another english essay. To write the second essay, I had to watch Temple Grandin. Temple Grandin is an amazing movie. It's very inspiring to me becuase if Temple (who has more severe issues than mine) can get her doctoral degree, than I can at least get my bachelors.

I was very disapointed when I found out that the March 15th release for the Original Broadway cast of Priscilla Queen of the Desert was only at the theater and I have to wait until April 5th to get it anywhere else. I want to see this show so badly. Nick Adams, who I saw in A Chorus Line as Larry is starring in this show along with Tony Sheldon and Will Swenson. Nick is amazingly talented. He deserves this leading role so much.

On a knitting note, I started a pair of mittens. It is my first colorwork project ,and its going quite well so far. I went to my former knitting group on Tuesday and had fun.

On pain, my pains been pretty bad, especially at night. To top things off, I fell yesterday and have a huge bruise on my right knee.

I've still been playing violin. My lessons at college are going quite well.

Finally!

I finally have almost all of my grades. I passed college 101, got an A+ in Music 1, and an A- in both English 1 and Theater 1, just waiting on my grade for history 4! I'm so happy!

I've been knitting whenever i can. I'm working on socks for a friend and socks for myself. I also started a baby cardigan, but I'm mostly working on socks.

The second semester has been going quite well so far. I'm taking Music 2, sociology 1, English 2, and Political Science 2. I like all my professors so far.

I saw Spiderman the musical about two weeks ago. I happeend to like it, though the critics hated the show. I think the critics were just mad that they werent allowed to review the show initally. I hope a soundtrack comes out soon!

I hope to see Priscilla Queen of the Desert soon, because one of my favorite actors, Nick Adams, is in the show. In fact he has a lead role. I saw him in A Chorus Line, and was amazed at his talent, and his good looks.  I cannot wait for the soundtrack to come out!

1st post of 2011!

I still haven't taken my finals for the first semester. I came down with an awful stomach virus and had to be sent home the week of finals. I will take them when I return to school for the spring semester. What really stinks is now I have to pull out my books and study where most people dont have to study over break.

Christmas was intersting. My grandmother fell on Christmas Eve, and my parents were with her in the ER on Christmas Day. She broke her wrist and a bone under her eye. Christmas dinner was actually on the 26th.

Then last wednesday morning, my mom slipped on the ice and broke her wrist. Now my two main sources of rides cannot drive and my sister is going back to college on Tuesday.

I've been achy lately, but I've been able to knit through it for the most part. I just finished a pair of socks for me. I used Deborah Norville's serenity garden yarn with size three needles.

Today I will start a new pair of socks. I'm in a sock mood lately.

That's all for now. Happy New Year!