A Rumi night

To dance is not to jump to your feet at once
and rise painlessly in the air like dust.
To rise above both worlds
is to dance in the blood of your pain
and give up your life.

To Joy

"Joyful, as a hero going to conquest
As truth's fiery reflection
It smiles at the scientist
To virtue's steep hill
It leads the sufferer on
Atop faith's lofty summit."

Beethoven has been my constant companion these past months. If you remember, it all started this summer when I blasted his 9th on the way to class every day. I stand by my statement that it is impossible to be in a bad mood when listening to Ode to Joy. Here try:

This performance occurred during the last night of the Proms, days after 9/11. You do not even have to watch, simply close your eyes and feel the tribute, the resilience, and above all, the exultation. Since the beginning of this summer I have listened to Beethoven's 9th at least once a day, usually more. And for 27 minutes, nothing else exists. It doesn't make me forget what I'm going through, but rather delivers the important message that life is worth living. Some days I like to think Beethoven himself is urging me to keep going. I'm halfway through his biography and read a few of his letters before I go to sleep. Let me tell you, Beethoven knows. He was a man who suffered much pain, who refused to take pain medicine because it would change him and hinder his musical prowess. Would his music be so mesmerizing if it did not spring from a dark place? His struggle is a testament to his commitment to life and reminds me that there are glorious moments worth fighting for. Somedays they might only last 27 minutes, but they are there.

I have been through two rounds of prolotherapy treatments, with the next one coming up in two weeks. I will be frank; they are absolutely awful. It's taken me so long to write about them because they are painful and by far the most difficult obstacle I've had to face. The first treatment in August went poorly because I walked in unprepared and overconfident. I thought I could tolerate any pain without difficulty. I was proven wrong very quickly. My mom and I went early on a Thursday morning, so I would be the first appointment of the day, and could rest the entire weekend before I had class again Monday night. We walked into my specialist office and were brought into the back room, where he conveniently has the equipment set up for prolotherapy treatments. My mom put on a heavy xray gown, while I undressed and put on a thin cotton hospital gown. I laid down on the table, belly down, and the tall attending nurse came over and asked me how I was doing. I smiled at her, and told her I was fine and have been through a lot worse. She did not say much more, but reminded me she had stress balls I could squeeze during the procedure. I thought she was being sweet, but was underestimating me.

My specialist came in and shook my hand and asked me if I was ready to begin. I might have smiled and gave him an enthusiastic, "let's do this!" He then began pressing my hips and legs and butt, looking for the painful areas and marking them with a blue marker. This unsettled me slightly because there were so many spots, and it was a reminder of how much pain I carry. After the markings, he said we were going to begin by numbing the area. Taking small needles, he goes to work right away, placing them in all the spots he's marked, moving quickly. I watch the xray machine in front of me, seeing the needles go in, and noting all the bones I have recently learned in anatomy class. This process shakes me up a bit, because the numbing medicine hurts going into the trigger points. The trigger points are bad enough by themselves, so they don't take well to invading needles. After the numbing, we begin the actual treatment, of injecting medicine into the same spots to cause heavy inflammation, hopefully triggering natural growth factors in my body. And this point is where I lost my nerve. The marking and numbing takes around 5 minutes, leaving around 45- 50 minutes of injecting needles repeatedly into my body. It hurts. I cannot even describe the pain. I feel the numbing needles have done nothing because I feel everything. In reality, I know I could be feeling worse pain, but this thought doesn't cross my mind. A few injections in, he accidentally hits my sciatic nerve and my whole leg shakes in anger. I cried out in pain, and lost whatever confidence I had after that. The nurse silently brought over the stress balls, and I took them in each hand and squeezed. My mom watched, shifting between holding my hand, patting my head, and holding my gaze. I could not have done it without her. And I know it must have been the most difficult thing for her, to watch me in such incredible pain. I felt guilty that she was being strong for me, and I couldn't be the same for her. The treatment carries on, and I still attempt to hold it together. Sometimes sounds escape from me, which I have no control. I whimper a bit, but I refuse to cry, to lose it completely in front of this doctor. Because even though he is a wonderful and talented man, he is my enemy for that hour. I have no choice but to direct my anger and frustration to him. And I refuse to let him win and see me upset. Partway through, he is concerned and asks me if I need a break, need to cry, need to stop for the day and do the second half of my body at a different time. I spit back that I am fine and let's keep moving. I take a one minute break around halfway through the treatment, and try to focus on my breathing. The rest of the treatment drags on, and after an hour it is finally over. I feel a bit light-headed and cannot get up right away. Since so much anesthetic is used, this is a normal reaction. Slowly, the compassionate nurse and my mom help me up. The nurse tells me how brave I was and how very few people have to go through something that long and intense over so much of their body. I slowly shuffle to the room next door and lie down for a second. The doctor wants me to stay there until I feel less light-headed, but all I want to do is get out of there. I am going to lose control any minute, so I quickly tell my mom to help me get dressed and we exit the building immediately. She opens the car door for me, and helps me lie down in the back, and then sits down in the front and turns back to look at me. She is concerned and I want to tell her it's okay, but instead I tell her I'm sorry and then the floodgates break. I ask her to plug my ipod in and soon classical music drifts through the car. I cry and cry and cry. I cry out in pain, I cry for having to go through something so awful, I cry because I do not know when it will end, I cry because I wanted to be braver, I cry because it feels right and because I need to.

I get home and am carefully helped up to my room and lay in bed, icing the inflamed area. It hurts, but I am in not much more pain than I am used to on a daily basis. The worst is definitely over. My backside is covered up by gauze, and we check to make sure the sites are clean and not infected. It takes a few days before I feel better, and I carefully walk around and try not to sit. All the places where I was injected bruise, and my butt looks like a glorified black and blue pin cushion.

I don't know if it would have helped me to read an account of the treatment before I went, but I wanted to write this down in case anyone wanted to be better prepared. I wish I could say the second treatment two weeks ago was easier. This time I went with my dad, who is also a pillar of strength and support. I felt a bit more prepared this time, but I was still very anxious the night before and morning of. This time the doctor had me take Xanax for my nerves, but I did not like the affects. I don't like taking medicine to begin with because of my awful experiences with mood shifting in the past. I already don't have control over my body, I do not want to lose myself as well. I know how Beethoven must have felt. But I took it to try, but I think the affects were opposite what they should have been. I remember walking into the waiting area of the office and getting extremely anxious that the carpet wasn't vacuumed. I saw pieces of white fuzz everywhere, and back in the treatment room, I turned to my dad and told him I couldn't go through with it. I told him the carpet was filthy, and why couldn't they have cleaned it and maybe this place wasn't professional and maybe we were making a mistake, and why were we here in the first place?? He calmed me down and we worked on some breathing and then he tried to take me to a different place. "Picture going hiking with your friend," he said. "You're up in the mountains, the sun is shining, you're..." "Dad, stop," I barked back. "It's not working." I could not bring myself to leave that room. I don't need to talk about the treatment again, it went just like the last one, minus hitting the sciatic nerve. I know it affected my father deeply. I am so blessed to have such a strong family and group of friends who can support me. I don't know what I would have done without him in the room. I know it was hard for him. He had difficulty holding himself up during the treatment and had to leave the room for a few minutes to lie down. His blood pressure dropped from watching me in so much pain. I know he's embarrassed that he showed weakness, but it actually gave me even more strength. It validated the pain I was going through. Later, after the treatment was over, he turned to me in the car and told me in his short, but powerful way that he did not know many people who could go through what I did. We are going together to the next treatment in October, and I think we'll both do better. The doctor wants to try an injection before I begin for anxiety since the Xanax did not work. I told him I'd like to bring my speakers and play Beethoven during the hour. There are many things that can transcend the power of medicine.

One of the best things I have done since I last wrote is become more open about my feelings. Too often I turn in and tackle my dark moments alone, blocking everyone out. I have so many people who want to help, who want to be there. I find myself struggling in telling them how I really feel because I find it's a large burden. They constantly tell me it isn't, but I cannot help how I feel. Sometimes I feel so separated from everyone, and have almost an out-of-body experience. I'll be talking or hanging out with family or friends and what we're doing will seem so trivial and pointless. Or I'll get angry listening to someone talking about their "normal life." I know I've become bitter and I know that everyone has their own struggles in life. No one is normal and we all carry around baggage. I have found that when I reveal how I really feel to those around me, I feel much better. One time in particular last week, I broke down in front of a dear friend. I was originally going to lock myself in my room, lie in the dark listening to my music, and writing a post, but chose to be vulnerable instead. I was so relieved after sharing my fears, and felt stronger instantly. Another friend reminded me recently that I have so many people around me who want to help carry the weight. That it's okay to share it. I am learning so much about friendship.

I have pages and pages in my notebook of other things I want to say, but they will be for another time. I've included a link below of a translation of Freidrich Schiller's "To Joy" poem, written in 1785, that Beethoven so beautifully put to music in his 9th symphony. This is the poem in its entirety, only sections are sung in the chorale section.
http://raptusassociation.org/ode1785.html
There are so many good lines about overcoming the dark, and celebrating the light. Enjoy. And as always, keep fighting.

"Endure courageously, millions!
Endure for the better world."

Mary Oliver knows all

Dogfish

Some kind of relaxed and beautiful thing
kept flickering in with the tide
and looking around.
Black as a fisherman's boot,
with a white belly.

If you asked for a picture I would have to draw a smile
under the perfectly round eyes and above the chin,
which was rough
as a thousand sharpened nails.

And you know
what a smile means,
don't you?

*

I wanted the past to go away, I wanted
to leave it, like another country; I wanted
my life to close, and open
like a hinge, like a wing, like the part of the song
where it falls
down over the rocks: an explosion, a discovery;
I wanted
to hurry into the work of my life; I wanted to know,

whoever I was, I was

alive
for a little while.

*

It was evening, and no longer summer.
Three small fish, I don't know what they were,
huddled in the highest ripples
as it came swimming in again, effortless, the whole body
one gesture, one black sleeve
that could fit easily around
the bodies of three small fish.

*

Also I wanted
to be able to love. And we all know
how that one goes,
don't we?

Slowly

*

the dogfish tore open the soft basins of water.

*

You don't want to hear the story
of my life, and anyway
I don't want to tell it, I want to listen

to the enormous waterfalls of the sun.

And anyway it's the same old story - - -
a few people just trying,
one way or another,
to survive.

Mostly, I want to be kind.
And nobody, of course, is kind,
or mean,
for a simple reason.

And nobody gets out of it, having to
swim through the fires to stay in
this world.

*

And look! look! look! I think those little fish
better wake up and dash themselves away
from the hopeless future that is
bulging toward them.

*

And probably,
if they don't waste time
looking for an easier world,

they can do it.

Mary Oliver

lost

I am sitting in a cafe right now. Directly in front of me, no more than four feet, is an old woman in a wheelchair. Her head is tilted to the side, and she looks so small in the midst of all the whirling customers traveling past. You can see her pain in the lines of her face and small openings of her eyes. Yet she is sitting there with a vibrant red, pink, and orange shirt, crisp white pants, a few strands of pearls, and a diamond bracelet. She is trying so hard to maintain a collected and confident exterior. We locked eyes for a few brief moments and something transpired. We had a mutual understanding and for those few seconds, the rest of the coffee shop did not exist. She revealed her suffering and hopelessness, and I revealed mine. Our exchange was interrupted by her friend sitting down with a small cup of coffee and sandwich. Hands shaking, the old woman reached down to take a bite, and couldn't raise it up to her mouth. Without hesitation, her friend touched her gently on the wrist and brought her arm up so she could eat. They continued this way in rhythm, the friend stopping occasionally to brush the crumbs off the old woman's shirt. It was as if they had been doing things this way always.

I came to this coffee shop first to study for a physics exam, but soon realized it would be fruitless unless I tried to put my frustrations and emotions on internet paper. I had an appointment early Monday morning with a new specialist, but have been unable to process the information because of a heavy exam week. Everything is still pent-up inside, and I just can't bring myself to release. With only two weeks left before summer term, I cannot have any setbacks.

Under direction by my PT, I saw Dr. Magaziner of North Brunswick. I was discharged from PT a few weeks ago because the iontophoresis and laser stim therapy were not working. Dr. Magaziner is well-known for his use of regenerative medicine to fight chronic pain. We went over my case history, which took quite some time, and then he physically examined me to determine where my pain was directly located. We found an incredible amount of trigger points ranging from my hips to my entire pelvic floor. The main muscles in my glutes were by far the worst. He wanted to try prolotherapy with me immediately, and believed that it could really put "a dent" in my pain with 7 or 8 treatments. I asked him where I ranked as far as severeness of cases, and he said I was in the more complex percent because of the many locations my pain stems from. I am rather new to the idea of prolotherapy, so I'll give a quick summary for others who may be considering it.

Prolotherapy involves a series of injections to trigger points that causes tissue inflammation. This inflammation is supposed to trigger your body's natural healing process, by bringing in growth factors to the area to then repair the site. You can read more here:

http://www.dremagaziner.com/treatments-therapies/prolotherapy-prolo/

Dr. Magaziner thinks I will need at least 7 or 8 treatments bilaterally, since my case is so involved, and the injections will take place once a month. He estimates they will take about an hour. We also went over pain levels to the procedure. Since I have so many areas that need to be injected and since I am doing the injections bilaterally instead of one side at a time, I will experience a good amount of pain, for up to 6 days after the procedure. He promised to write me notes for classes that will allow me to stand up, since sitting down will not be an option after injections. After 8 months of so, he then wants to do PRP injections, a step above prolotherapy, to the more severe parts of my body that need healing, specifically hips and groin (sites of all three of my surgeries.)

As I said, it was a lot of information to take in right away. I am excited to start new treatment, but as always, I am approaching with a side of caution. I have been promised relief many times, and right now my pain is worse than ever. And even though I've had much experience in handling pain, I am not looking forward to 8 months of fighting. The first treatment is scheduled in two weeks, and I am anxious about how it will feel and affect me. It's also frustrating that for the next year I will again have to rely on family and friends to take me for the treatments and take care of me when I am home. I am tired of being cared for. I got very emotional watching the old woman in front of me because I can put myself in her shoes. I know how difficult it is to maintain a presentable appearance when you are struggling so much and reluctantly relying on people around you.

The more time that passes by, the more I feel cold, hardened, depressed, and reclusive. I used to be able to talk more about how I feel, but now I am hiding away and ignoring human contact. It's hard to witness so many people advancing in their lives, romantically and professionally. I am even beginning to feel apathetic to other people's struggles because I am so tied to my own. The feeling are not healthy, but I don't really know what the solution is at this point.

If you could but see this rage inside of me
I could shake these stars to dust

I wrote those lines a few weeks ago, but they grow more appropriate daily. I apologize profusely for the lack of email responses. I hope you can see I am just trying to keep myself up right now. However, if you have any experiences with prolotherapy, prp, or other regenerative medicine, please comment to this post. Or if you have any encouraging words, poems, or thoughts, this would also be a good place (and time) for them.

On repeat

Gillian Welch - Hard Times

Green light

Mainly because I got a 98 on my bones practical this past week and found a women's climbing poetry book at the greatest used bookstore ever.

If you are ever in a foul mood, take a trip up to Paramus, NJ to the enormous Barnes and Noble and saunter back to their enormous used book section. Instant pain relief. If you need more of a distraction, continue up route 17 to the sushi cafe in Ho-Ho-Kus. Be sure to blast Beethoven's 9th. I'm pretty sure anything can be fixed by the 4th movement. Then, drive less than 2 miles more to the town of Ridgewood, where there is delicious blueberry and cookies and cream ice cream. And an enchanting park where a little boy triumphantly jumped on a large rock to shout, "HEY EVERYBODY!!!!! I JUST CAUGHT TWO FIREFLIES!!!" Thank you little boy for reminding me about magical moments in life.

I also had a swinging time last weekend (before the ER disaster) at the Jazz Picnic on Governor's Island in NYC. A true Gatsby affair, it's happening again this Aug. 20 and 21st. If you do anything this summer, you must do this. It's a perfect opportunity to dress up, travel back in time, and recreate yourself. Isn't that the beauty of dressing up? You can be anyone. You can have any story.

This week was rather rough because of the several doctor visits to figure out the source of the severe allergy reaction. I still remain a medical mystery. Boy, if I had a nickel...

I start allergy testing and shots in two weeks. Maybe we'll get some answers. My sitting pain also greatly increased this week- I spent a lot of time laying down in bed with ice packs. I had difficulty getting through classes and stood for a lot of the time. In anatomy lab, I stayed after with my teacher to learn more about the pelvic floor muscles, since we're not going over them in class. I'm soaking up all this information because I am certain I will figure this out one day. Piece by piece, I am learning. I know now that my ischium hurts like crazy, (specifically this small process next to the ischial tuberosity that I cannot find a name for anywhere.) I think I am seeing a new specialist in NJ that my PT recommends who does a lot with damaged tissue and imaging.

I remembered this week how important it is to do things you love, especially when you are in a lot of pain and frustrated beyond belief. Go outside and catch some fireflies. When I was watching them last night, glowing in the distance, the 1920's still on my mind, I remembered one of my favorite parts of The Great Gatsby. Somehow I have lost my copy- next trip to the used bookstore must change that. (unless I have some readers with extra copies?) I need to re-read this asap. Luckily you can find anything on the Internet. Does anyone remember his obsession with the light at the end of Daisy's dock? We are first introduced to it in Chapter 1:

"[Gatsby gazed at] a single green light, minute and faraway, that might have been the end of a dock."
As well as the last chapter, last paragraph:

"Gatsby believed in the green light, the orgastic future that year by year recedes before us. It eluded us then, but that’s no matter — to-morrow we will run faster, stretch out our arms farther. . . . And one fine morning ——

So we beat on, boats against the current, borne back ceaselessly into the past."

I find myself staring out at the green light often. It always seems within reach, if I can only cross the lake to get to it.

Beat on everyone.

[/rant]

I'm really good at being sick. Right now I feel my full-time job is keeping my body together in one piece. No one wants that.

I'm so sick of writing emails to professors and dropping out of commitments last minute. The worst is no one ever gives me a hard time. It feels like everyone just understands that this is my life. I don't like those low expectations. I want responsibility. I want a routine. I want boring days. I want to stop writing and ranting.

I went for a run yesterday afternoon. The same route in my neighborhood I've done for countless weeks now. Let me tell you- I was killing that route too. Down to 8:30 miles for a 2.5 course, with plenty of energy at the end to do an extra mile loop. Killing it. Yesterday I jumped in the pool after my run, as I always do. All of a sudden I could not stop itching my face. Then I felt it change and it started to hurt badly from all the pressure of the swelling. All of my lymph system swelled up and turned bright red. My sister made her first 911 call. Turns out ambulances take forever, so we jumped in the car and raced to the ER. Also turns out when your face is swelling up like a large watermelon, you get seen right away. I got on an IV with a heavy duty cocktail of steroids and benedryl (by one of the hottest nurses ever I might add.) In fact, I was almost high enough from all the medication to start asking him how many patients told him he was beautiful every day.

I got discharged a few hours later, and rushed home to get my psych paper in on time for an online class. I hate the way medication changes you so quickly. The steroids were giving me severe mood swings, the benedryl made me tired and unintelligent. It brought back bad memories of college and being on different medications and having people come over to help me write and type my papers. I thought I'd never have to be that helpless again.

Today I saw my primary doctor and made an appointment with the allergist tomorrow. I'm under strict orders not to go outside. My primary told me I really need to stop having weird things happen to me. I had another small outbreak just from going to the car to get the doctors this morning. My body seems to be on high alert for any allergens, thus the bubble girl status. I did not feel well today so I had to let my professor know I couldn't take my anatomy exam tonight. Tomorrow I have two big tests, and there's no option to stay home. Summer classes, especially science classes are almost impossible to miss.

We now have to stop the laser stim and the iontophoresis treatments at physical therapy until we figure out what's going on. So once again, my main problems get put on the back burner. When the triage nurse at the hospital asked me if I had any preexisting conditions or any surgeries done, I just stared at her with the typical puppy dog eyes. I am so sick of hospitals. I had to tell Mr. Hot RN exactly what vein to put the IV in because the rest tend to move. You're not supposed to know these things when you're 23. I'm supposed to be worrying about moving out of my parents' house and getting into good dpt programs and where I'm going to meet my next boyfriend. At this point, I am only concerned with making it through the day in as little pain and medical drama as possible. I want more.

[/endrant]

PS. I need a hug.

things you should know

- I'm still alive.
- I'm in the middle of the busiest summer of my life, taking classes and getting ready for PT programs.
- I'm currently memorizing all the bones of the body.
- I go to physical therapy twice a week. Started laser stim and iontophoresis for my piriformis. I'm only on my second treatment, but will write more detail if they have an effect.
- I run every day. Far. I lost a lot of weight. I lift every other day. I want to run a half marathon next year. Exercise is my free time away from the stress of class.
- My increased exercise fires up my piriformis muscles even more. Sitting in classes all day is so difficult. But I don't want to talk to my professors about it or my classmates. It was much easier at my undergrad college to make connections and explain myself. Now I'd rather push through.
- Exercise makes me happy. Being strong makes me happy. I'm not going to stop, even if it would reduce my daily pain. Physical pain < mental pain
- I might be getting a PRP (platelet rich plasma) injection in August in the piriformis region. It takes your blood, converts it to plasma, and puts it back into the problem area to help damaged tissues. It's experimental in that region. I have to wait until I am off iontophoresis before I can get it done.
- We still have no idea why my piriformis muscles are so hypersensitive and tight. I think it's by far my underlying problem because it's increased pain levels affect every area around it.
- I'm going back to Dr. Kellogg on Monday to get more injections in the vulvar region, hoping we can at least get that issue back on track.
- The world is full of so many chairs without cushions. I hate hardwood chairs.
- I read each and every one of your emails. I do. I haven't responded for a few months now because it's a little too much to handle. But please remember I'm here, fighting with you.

Struggle

Do you know reader how many times I have ended up here on the floor, trapped in my body?
Do you know how desperately I try to keep going?
There are some nights I don't have the strength.
I want to talk, but this is all I know how to do. This, and pushing people away.

I wanted to drive far away today. To find where the road ends. But I've already tried that.
Did you know it just goes on and on and on?

pain, pain go away.
I need to be able to sit through my classes.