Change in plans for today

Saw my rhemotologist (sorry not that great at spelling) yesterday. She has treated me over the years for carpal and cubital tunnel. In addition, she got me into my 1 appointment with Dr. Schwartzman within months instead of 2 years because they both work for drexel. I wasn't expecting her to do much at this visit. She advised me to not get my injection today into my back cause she worried it would cause a possible spread of RSD and she said we should know for sure that it would be helpful first, so she ordered an MRI that i got also yesterday. She said if something like syattica shows in the MRI then i should reschedule the injection cause it would help that though physical therapy would probably help more, but i can't really do physical therapy due to  my pain from RSD. She also wrote me a prescription for a medicine thats like motrin but you take it once a day instead of 2-4 times a day. I'm going to call my pain doctor today.

return to blogging

i havent blogged in a while. my rsd has been flaring. i went to to the er last Wednesday and though they wrote me an rx for a couple of pain pills they wouldn't give me one in the er and they.discharged me crying claiming they cant and wont do anything. though they did suspect i may have syattica as well as rsd.

today i went to a small gathering and met two other people with rsd.

my back has really been bothering me. on Friday June 1st im getting a lumbar epidural spinal steroid injection. im waiting to hear about insurance approval on inpatient ketamine. if approved i will be admitted june 11 for 5 days. keeping my fingers crossed insurance will approve.

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.