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.