To strive, to seek, to find, and not to yield.

I dreamed about writing a post like this for many years. Years, can you believe it? Whenever I have a moment to myself, old scenes flash before my eyes. They no longer haunt me, but I am still amazed they were lived through.

I'm trying to explain how I feel right now, but words are failing me. Imagine being weighed down by a huge pack while climbing a mountain. (Did you expect anything else?) The pack is so heavy, you cannot even lift your head up. Bending forward, teeth clenched, you spend all your energy taking one step at a time, being careful not to trip over anything in your path. Sometimes you stop and think about how far you have to go and life seems hopeless. You wonder if it's even worth it anymore to continue to take it, to continue stepping forward. If you could just take your pack off, if you could just lighten the load, if you could just feel a release for a little while...

Think about that burn in your legs, the ache in your back, the shortness of breath, and then imagine what it would be like to have your pack removed. Immediately, your back straightens and you realize how far from normal it was. With the weight now gone, you slowly regain your breath. Walking tall, you now lift your head and your eyes are just flooded with vistas of light. It is like you are seeing for the first time. You see everything around you and it all looks different. It does look like you are seeing it for the first time.

You cannot help but reach out in front of you, just to make sure this is all really happening. As you continue to walk upward, you pause several times, checking to see if you are still carrying the weight, but you realize you just feel the ache of carrying it for so long. It's at that moment you understand how much weight you had been carrying this whole time, and what a toll it took on you. Life is now a second chance. It's a gift.

My prolotherapy treatments are working. They really are. The release I feel is unbelievable. We still have a lot of work left, but every time I go my pain decreases less and less. I'm beginning to go every two weeks now in order to treat the front of my hips as well.

I've been an emotional wreck recently because I am just so happy. I cannot contain it, I cannot hide it. It spills out of me in long waves. After my treatment last week, I cried for almost an hour in the recovery room with my dad and sister. I just could not stop and kept apologizing to them and the nurses who came in. It was like every bad thing that has happened to me needed to be released from my body. There's a lot that needs to leave. If you see me, don't be surprised if I start to tear up. In fact it's already happened in this coffee shop. Never did I understand what tears of happiness were until now. Every moment feels a bit dramatic. I just did not think I would ever feel this way again. It's as if life has said to me, "Welcome back."

Butterflies

Recently we are having brilliant weather. The leaves are turning, and the sun is shining through them to create autumn kaleidoscopes. There are rolling clouds accompanied by a faint wind that is just breezy enough to fly a kite successfully (which is really all that matters). Comfy clothing is back, along with the savory scents of bread, pumpkin, and campfires.

This weather just demands long winding drives, with open vistas of oranges, yellows, and reds amidst the green landscape. One day last week I was out cruising to wonderful music, making waves with my hand out the window, and all of a sudden a monarch butterfly flew directly in front of my car. For almost a minute we flew together, and I watched it gracefully dance as if by magic.

The next day I went for a lumbar MRI, and on my way to the facility a monarch appeared again in front of my car. Even though I was miles from the previous location, I like to think it was the same butterfly. I will never forget the way their wings glowed, flooded by sunlight.

I found out a few days later that my MRI came back clean. No obstruction in my lower back, vertebrae are in place, etc. I think this is the first clean MRI I have gotten back in four years. I was shocked. And then shocked that I was shocked. I have become so accustomed to the odds not being in my favor that I have adopted the wrong mindset.

The even better news is I have been feeling less pain on most days. I do believe I feel my body healing itself. This is when I'm supposed to be noticing some relief from the prolotherapy, so I really think it is helping. Which makes it all worth it. I am still anxious about what's to come, but I'm holding steadfast to hope. My next treatment isn't until November 17th, so there's more time to notice improvement. When I stop to really think about it, I get choked up. There's been a few tears this week, only because I don't even know what I will do if this is the final stretch. That's a lie. I will go out dancing. I will run a marathon. I will climb everything. I will be carefree. I will be happy.

I've been spending a lot of time reminiscing how far I've come. The constant in my life has always been my family and friends, who have stood by me no matter what. I have always been slow to trust and let people in, but these wonderful beings took the time to break down all my walls. I have been so much happier lately and have not needed to rely on them like I used to. It is so comforting to know I have people in my life who accept and love all parts of me. And who will be there for whatever lies ahead. I owe them everything. I stumbled upon this song a few days ago, and it's been playing nonstop. It's called Rely by Alex Cornish and it's here as a tribute to everyone who got me through this far.



Right now I'm taking each day as it comes. I am anxiously awaiting decisions from physical therapy programs. I'm icing, stretching, and doing yoga on a regular basis. I'm working, taking classes, and enjoying every minute of fall. And of course, I'm always on the lookout for more butterflies.

Three's a charm

Thursday marked my third prolotherapy treatment and it went much better than anticipated. I'd like to say I walked in with a larger batch of courage, but I think it had a lot to do with the two Demerol injections I received at the office.

But sure, let's say I was much better prepared this go around. Really, I was. I did yoga the day before to balance my chi. I had a fun, relaxing night. I woke up feeling confident and ready for the challenge ahead. I brought earphones and made a rockin' Beethoven playlist in the car. I did not take the Xanax and felt like myself. I walked in the office, on time, with a clear and steady mind. I was immediately brought back by the nurse where I signed the necessary paperwork, and then got a Demerol injection into my hip by my specialist. Both he and my super tall nurse remarked how bony my hips were and I smiled. Then, I took off my pants and put on the open-backed hospital gown, and positioned myself on the table. Then the whole crew came in- my dad, doctor, and the nurse and I was asked if I felt the Demerol. I did not feel much of a difference, so I received a second injection into my hip, and then we began.

I put on my headphones and transported myself into a different place of symphonies and high vaulted concert halls and standing ovations. My dad and I also worked on my breathing, which I was able to control this time. In all honesty, the whole process went very smoothly. Yes I still felt pain, but it was nothing compared to the previous two times. In fact, I was in high spirits and attempting a few jokes. We tried to take pictures of all the long needles sticking out of my butt and hips so I could feel like a badass. Or a pin cushion. Now you see why I was only attempting jokes. Don't worry, pictures will never go up here.

We went a bit longer than the previous two treatments, around an hour and fifteen minutes. I think we tackled more spots in different locations, especially my lower back- lumbar area specifically. I'm hopeful that this all might be working because examination felt better in certain area we hit aggressively last time. Soon I will also be getting an MRI of my lower back to see if there are any nerve structure issues. The doctor wants this new information to better treat me in the future. I also received my first treatments on the anterior portion of my body. Using very small needles, Dr. Magaziner injected all of my hip scars, as well as my two long pelvis scars.

I feel the need to reiterate how well the treatment went. I was on quite the high because I felt I was ahead for once. It was the same feeling I get after reaching a summit. Nothing can touch you.

The Demerol did not make me hazy and I still felt I had control over myself. Unfortunately the side effects of Demerol include nausea, so I went to lie down in the room next door after we were finished. I did not get sick, and the doctor quickly injected my hip with some anti-nausea medication.

Back at home, I got in bed and put some ice on all the areas that were injected. I was very sore, especially feeling pain in my lower back and hips. Bending over was definitely not an option. I rested in bed all day, and spent most of the time sleeping off the Demerol. When I woke up in the morning, I still felt a lot of pain in my hips and lower back, making it difficult to move around. So the recovery was a bit more difficult than previous times. But I woke up today (two days later) feeling almost as good as new. The important things were to lay down, rest, and ice.

It's been a pretty crazy week. Monday I was in the emergency room for a terrible terrible ear injection. I missed my second anatomy lecture because of it. I'm frustrated how much my body continues to fight against me, but I try to remain levelheaded. Some days I just want to burst. I'm tired of being stuck- I want to wake up and go for a run. I want to go out and dance. I want to play tennis. I want to climb. I want to push my body and embrace it. But I know I must stay patient and wait and heal and work through it.

I can do this. I can do this. We can do this. Some days we walk ablaze with hope, and some days we just continue.

If you are in need of some hope, I've got a great dose of it right here: A young deaf woman hears for the first time. Imagine what it will be like to feel healthy again and let's keep on together.

From the book: Poems to Live by in Uncertain Times

September

by Jennifer Michael Hecht

Tonight there must be people who are getting what they want.
I let my oars fall into the water.
Good for them. Good for them, getting what they want.

The night is so still that I forget to breathe.
The dark air is getting colder. Birds are leaving.

Tonight there are people getting just what they need.

The air is so still that it seems to stop my heart.
I remember you in a black and white photograph
taken this time of some year. You were leaning against
a half-shed tree, standing in the leaves the tree had lost.

When I finally exhale it takes forever to be over.

Tonight, there are people who are so happy,
that they have forgotten to worry about tomorrow.

Somewhere, people have entirely forgotten about tomorrow.
My hand trails in the water.
I should not have dropped those oars. Such a soft wind.

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.

Elation

I played tennis yesterday for the first time in over a year.
I've been running and lifting and pushing my body to remember what it used to be.
The elation is indescribable.
I am smiling, on average, 250% more per day.
I feel the urgent need to run out into a big open field, throw my hands up, and spin around in the rain, the coolness of each drop matched with this burning spirit.

For the first time since this all started, there is no anticipation of another surgery or another big step. No more knocking me down before I've stood up again. This is it.

I am slowly reclaiming myself back.

Tree Dance

Whenever the weight is too much,

when I am overflowing
with ghosts and emotions,
I sit in the park to watch the trees.

Dark against a setting sky,
their melodic rhythm in the wind
slowly settles my mind

and I drift to some other place.

Back and forth they rock,
graceful and rooted, the wind reminding them to sway
and me to breathe.

But as the moon rises
over their outstretched branches,
casting light upon their dance,
I no longer need breath.

O moon, shine upon this darkened soul.
O trees, calm this unsettled heart.
Fix me.
Heal me.

A little Mary Oliver for the soul

Things have been progressing well recently. I'm still at physical therapy 8+ hours a week and then exercise on my own the other 4 days of the week. I don't kid around. Being able to run again is wonderful. I've lost over 10 pounds and finally fitting back into all my pants again. Slowly but surely, I'm getting stronger and faster. I'm still months away from knowing if this surgery really did anything for me, so I continue to live in the moment. I do really think that I am going to see results and I have a lot of hope in my heart going forward.

My pain is still pretty bad, but is quickly overshadowed by the ability to work out again. My friends and family continue to be incredibly supportive; I owe them everything. One thing I've noticed is I am handling meeting new people very differently than before. I used to be so open about everything, but now I want to keep my feelings and experiences to myself. It's becoming difficult to connect with people in my classes, new acquaintances, dates... I find myself withdrawing and saying as little about myself as possible. It's so hard to explain! I want them to know my story, but then again it causes me anxiety figuring out when the appropriate time is to explain and exactly how much I should be explaining. I know a lot of you understand. We don't want to be defined by our pain, yet we don't want people to forget. We don't want pity, we want understanding. We want to look healthy some days and want to look sick other days. We want answers. We need answers.

I find so much solace in Mary Oliver's poems. In honor of Poetry Month, here's a few that have made my week. Regardless of your circumstances, please let me know in the comments which of the three struck you the most, and if you feel like sharing, why?

The Uses of Sorrow

(In my sleep I dreamed this poem)

Someone I loved once gave me
a box full of darkness.

It took me years to understand
that this, too, was a gift.
-----------------------------------
Heavy

That time
I thought I could not
go any closer to grief
without dying

I went closer
and I did not die.
Surely God
had His hand in this,

as well as friends.
Still, I was bent,
and my laughter,
as the poet said,

was nowhere to be found.
Then said my friend Daniel
(brave even among lions),
"It's not the weight you carry

but how you carry it-
books, bricks, grief-
it's all in the way
you embrace it, balance it, carry it

when you cannot, and would no,
put it down."
So I went practicing.
Have you noticed?

Have you heard
the laughter
that comes, now and again,
out of my startled mouth?

How I linger
to admire, admire, admire
the things of this world
that are kind, and maybe

also troubled-
roses in the wind,
the sea geese on the steep waves,
a love
to which there is no reply?
-----------------------------------
In the Storm

Some black ducks
were shrugged up
on the shore.
It was snowing

hard, from the east,
and the sea
was in disorder.
Then some sanderlings,

five inches long
with beaks like wire,
flew in,
snowflakes on their backs,

and settled
in a row
behind the ducks-
whose backs were also

covered with snow-
so close
they were all but touching,
they were all but under

the roof of the ducks' tails,
so the wind, pretty much
blew over them.
They stayed that way, motionless,

for maybe an hour,
than the sanderlings,
each a handful of feathers,
shifted, and were blown away

out over the water
which was still raging.
But somehow,
they came back

and again the ducks,
like a feathered hedge,
let them
crouch there, and live.

If someone you didn't know
told you this,
as I am telling you this,
would you believe it?

Belief isn't always easy.
But this much I have learned-
if not enough else-
to live with my eyes open.

I know what everyone wants
is a miracle.
This wasn't a miracle.
Unless, of course, kindness-

as now and again
some rare person has suggested-
is a miracle.
As surely it is.

It starts with a step

The past month has been quite the struggle, which is why I haven't felt like writing. I have also been moving further and further away from this blog because it's no longer serving as the coping mechanism it was when I first began writing. But, major changes have happened and I wanted to update about them. There have been many emails with questions about my surgery and how I am currently feeling.

Two weeks ago, I had my fifth surgery in Philadelphia by Dr. Meyers. It was a pelvic floor reconstruction and bilateral adductor release. The week leading up to the surgery was difficult to get through. I was very anxious because I did not know what to expect. There was also no other surgical orthopedic issues to address, which meant if this surgery did not help, I would have no other options.

The surgery has been more difficult than I anticipated. There were two 4 inch incisions made, shaped like a V on my pelvis. The surgery took about an hour and 15 minutes and I was probably in the recovery room for 2 hours, on heavy pain medicine before I was finally driven home by my dad. The pain was significant- the first few days it felt like someone had repeatedly stabbed me in the pelvis. But I went off the pain medicine quickly because I never like taking it. Overall, I think the surgery went very well. Dr. Meyers found more tears than he had expected, but they were also smaller than he had expected. He fixed those (located around the pubic synthesis) and released my adductor muscles. My bone was also much more inflamed than he expected, so I received steroid injections to rectify the osteitis.

The important component to this surgery was battling scar tissue. The day after surgery I had to get up and walk a mile. My dad and I measured out our house, and I did laps around the second floor, using a crutch to push in front of me for support, as well as my dad's arms. It was difficult to start moving, but once the muscles got warm from exercise, they actually felt better. Every day it became easier to walk- by the fourth day I was walking 2 or 3 miles a day. I have just started physical therapy last week. I'm going three times a week for 2+ hours a session at a local physical therapist's office. He is a very experienced orthopedic PT and I am so pleased to be working with him. It feels like such a privilege to drive 15 minutes to receive excellent care. Although he hasn't worked with anyone like me before, he has great experience with labral tears and this specific pelvic floor reconstruction surgery by Dr. Meyers. A lot of young male hockey players and wrestlers get the same surgery. Things are progressing slowly- I need to have deep adductor and piriformis "massage" every visit. I hate using the term massage because that gives the inclination that it feels even slightly good. The adductor massage is to break-up scar tissue that is forming from the surgery. It actually hasn't hurt too terribly because my muscles have been very loose. I believe I owe that to my dutiful walking every day. On the other hand, the piriformis is a whole other monster. Before surgery, my pain was coming solely from my piriformis and my obdurator internus. They are extremely tight, which makes sitting so uncomfortable. We're hoping the surgery is going to correct both of these problems. However right now my muscles are not happy about being put through surgery again. They have fired up and become even more tense, especially my piriformis. Two days ago, my PT said he needed a jackhammer to loosen them up. The massage has been on the border of being unbearable for the last two weeks. Today we used stim to help loosen the muscles, which seemed to work slightly. It was slightly easier to get through, and I'm considering that a victory. Hopefully they continue to loosen as I heal from the surgery.

Currently, I am trying to live in the moment, and take each day one step at a time. This surgery could possibly be the solution to all my pain, but I won't be able to tell for some time yet. So I am trying to be patient and trying to focus on recovery, like I always have. This is the third time I've had to re-learn how to walk, and I'll tell you that it doesn't get any easier. The worst part for me is the two or three weeks right after surgery. As much as I try to stay positive, I sink down and get depressed about dealing with even more pain and starting again from step 1. It's frustrating. I got very angry after this surgery and dealt with it inwardly, as I always seem to do. Sometimes, if I stop and think long enough, I think life is horribly unfair and get very jealous of the people walking around with easier lives. It's not right for me to judge other people's lives and consider my suffering much greater than theirs. The past week has been a real turnaround and I've dragged myself out of that hole. Self-pity, sulking, and jealousy isn't going to get me anywhere. Taking a step forward will. I'm continuing to walk as much as possible. Today I even ran my first mile. Ok, I lightly jogged my first mile in 12 minutes. But I had the biggest smile on my face while doing it. There is no better feeling than running for the first time after re-learning how to walk. There isn't. In those twelve minutes, I felt unstoppable and untouchable. I felt like I could do anything and overcome whatever life throws in my way. And even though I slowly hobbled to the mat to ice afterwards, I have never felt stronger. Those twelve minutes are a gift. But I would never have been able to experience them if I hadn't gotten myself up the couch and started walking. Keep taking those steps.

Newton's Third Law

Confession: The only reason I am updating tonight is because my head is about to explode from physics, specifically coefficients of static and kinetic friction. Don't get me wrong, I'm thrilled that I know how to calculate the tension in cables supporting cat burglars and the acceleration of crates in moving banana truck beds. After a solid month of initiation into the realms of chemistry, biology, and physics, I can also tell you I love science and math. There is something very calming about being able to find a "correct" answer. However, I have not completely forgotten the right side of my brain. I miss writing. I miss critical thinking and debate. Sometimes I just want to shout out "heteronormativity" or the four pillars of Victorian womanhood from the back of class.

I have not written in awhile for a variety of reasons. I really needed time to take a step back and worry about myself. I also wanted my thoughts and feelings to be private so I could self-analyze. And as I said, school has taken off and my time is now very limited between classes, taking care of my health, and keeping my sanity. I need to take 10 prerequisite classes before I enter a DPT program and I am scheduling them all in less than a year. (A lot of people keep telling me I'm crazy, but these tend to be those who don't know me too well.) I'm not intimidated by the work I need to do to get where I want to be. I'm very confident I want to be a physical therapist- I want to help women and contribute all I can to research of the pelvic floor.

As always, a lot has happened since I last updated. My health continues to change, sometimes on a daily basis, (even I find it extremely exhausting to keep up.) The shorter version is I started experiencing right hip pain around a month ago. At first I thought I needed to take a break from exercising, so I rested for a few weeks. My symptoms kept getting worse, until one weekend I had a sharp pain in my hip that felt very much like a tear. I couldn't really walk without a crutch or cane, so I went in to see Dr. Coleman and get an emergency MRI. The results came back that it looked like a possible re-tear of my right hip (the one I had surgery on this past summer.) However, it's difficult to tell because scar tissue can also look like a re-tear. Around three weeks ago I had a steroid injection into the hip at the Hospital for Special Surgery and felt dramatically better after it kicked in 2 days later. Since then, I've been walking around with a cane and my SI belt. They are both very confining made me feel trapped. There are few things more frustrating to me than limiting my movement. Being active is such a huge component of who I am- all I want to do is run around, climb mountains, play tennis, dance... being stripped of that freedom and being forced to walk around with a cane is difficult. I tried to imagine the cane was my ice axe the first day, but my brain was not having it.

However, I have to interject that utilizing the cane is an interesting experience. As much as I hate being restricted, I am treated very differently when I walk with a cane. Strangers are so gracious and understanding. In a small way, it was nice to be recognized as a "sick" person or a person with chronic pain or whatever you want to identify it as. I think people tend to forget the pain I am feeling on a daily basis, which is normally great because I do want to blend in. But there are just a few times where I want my pain to outwardly be expressed. Perhaps for me, that validates it and visualizes something so invisible.

At first I was incredibly depressed. I think I felt defeated that yet another thing was wrong with me that we just fixed. I was also just starting to increase my workouts and making progress in regaining my strength and physical activities that mean so much to me. I was also upset that something went wrong when I have been incredibly careful after this surgery- always listening to my surgeon, physical therapist, specialist, etc. and not pushing myself. I felt I was being punished for finally doing things right and learning patience. Because my right hip was in pain, everything flared up, which meant more pain and difficulty sitting. There were a lot of days I spent locked in my room in the dark listening to Joni Mitchell on repeat. I really did want to give up this time and was only truly living for those around me and not myself. I knew that was dangerous and I needed a new attitude.

Don't ask me how it happened, but literally my outlook changed overnight. It was some sort of miracle because I desperately needed it- I may even go as far to call it grace. If the universe wanted to pick me up, the least I could do was accept the gift. I no longer saw myself as being trapped. I am grateful for the time to spend back at home, focusing on classes, and self-improvement. I have been doing extremely well in my classes (now that I'm not exercising or playing sports, my competitive energy needs to be fueled completely by school.) Doing well in class is giving me the self-confidence I need to keep working hard. I have also been able to read much more. So far I've been able to read around a book a week and make a dent in my very long reading list. I have also been practicing and playing the piano more. I find that having these three goals to focus on and devote energy to has helped keep me motivate and positive. I am also so thankful that I am back living at home, spending time with my parents and sisters that I never would have been able to if I was not in my current health position.

To bring you back to the present, I am currently going to my chiropractor often because my low and mid-back keep going out of alignment due to my hip instability. I was going a few times a week, but may finally be down to once a week if things continue to hold. I just stopped walking with a cane a few days ago and my right hip feels pretty good. I still feel a slight hint of pain and am constantly worried it will come back, and even worse that I am dealing with a re-tear. But we are still unsure of what is happening- I am going to continue to monitor my hip and limit all physical activities to light walking. I am getting traumeel injections by Dr. Kellogg every other week. It seems that vulvar pain is gone and is staying away. It's always my obdurator internus and piriformis that are tight and in severe pain. We reach these trigger points by hitting them inter-vaginally. I have stopped going to physical therapy because of the right hip and cannot do most of my original exercises. Finally, I am still scheduled for my surgery with Dr. Meyers on March 15th. This will be a pelvic floor reconstruction, which involves repair of the tears near my pubic synthesis and bilateral adductor release. I personally feel he might end up releasing my obdurator internus as well since it has been causing me so many problems, but that will have to be something he investigates while he's in there. After this surgery, the recovery is walking a mile a day to prevent scar tissue. I will also wait anxiously to see if I will need yet another hip surgery. But I am taking it one day at a time.

Newton is on my mind today since we spent all morning learning about forces of motion. According to his third law: For every action, there is an equal and opposite reaction. I could not stop thinking in lecture how much that applies to my life. Sure, the universe has been throwing a lot of obstacles my way, but it is comforting and inspiring to know that I am reacting to it with an equal force. Whenever you feel weak, remember how much force you are opposing. Sure, sometimes we just want to fall down and be alone with Joni Mitchell in the dark, but most days we stay standing and continue to carry out our lives. That means we are just as strong as the forces against us, and (forgive me Newton and physics professor), but I daresay we are stronger than them.

Long post coming soon...

"Only to the extent that we expose ourselves over and over to annihilation can that which is indestructible be found in us."
-Pema Chödrön

Taking a Break

I haven't updated in a month, so I've been receiving a lot of emails asking when I'm coming back. To be honest? I need a break. My life has been so public that I need time again for myself. Classes start in a week and my surgery is in 3 months, so I will be quite busy. I'll update occasionally, and certainly once I finish the book that's currently consuming me, which deals with chronic pain. I will try to respond to emails as timely as possible, but bear with me as I take a step back.


The Winds of Fate
by Ella Wilcox

One ship drives east and another drives west
With the self-same winds that blow;
'Tis the set of the sails
And not the gales
That tells them the way to go.

Like the winds of the sea are the winds of fate
As we voyage along through life;
'Tis the set of the soul
That decides the goal
And not the calm or the strife.