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.

Addressing reactions/Becoming stronger

I have been very busy this week observing PT all day, as well as doing my own PT and getting injections. My inbox has been flooded, and I promise I will do my best to go through it this week. I first want to say how overwhelmed I am from all the positive emails, thanking me for speaking out. Also, I am overwhelmed by the amount of emails of women telling me their stories and asking for advice. I promise, I will respond. That being said, I am not going to respond to dating invitations, complaints, or hate mail. I wanted to make a few things very clear, as well as address some popular questions, so I will even bullet them out. If you want me to address anything else, please just ask the question: open communication is important.

-First, I will not even address the ridiculous and hateful comments that have been made in discussion groups or in other online areas. Please ignore the disrespectful and inappropriate comments and do NOT be shaken by them. This is not general public attitude- it is ignorant people who have nothing better to do than make fun of the suffering of others. Please, please, please do not even read them. The world is filled with supportive people who are on your side and empathize with your problems.-I did not go on the show to showcase my dating or personal life. I do not watch MTV, but was contacted through my blog last spring. I saw the show as a way to tell my story, a way to break taboos, and a way to get the word out to other women (and men) that they are not alone in their suffering.
-I understand the show focused a lot on sex and many women are disappointed. I want to make it clear that the inability to have sex was not my primary concern when being filmed. As you could tell, my pain impacts my daily living- sitting is extremely painful and medications/treatments make it very difficult to live a "normal life." However, everything is edited to fulfill a purpose. MTV only had a limited amount of time to tell a story that most people have not heard about. I am not saying they did a perfect job or I would have done it the same way, but I am thankful to them for putting unheard medical conditions on the map, no matter what the context. My blog views has increased tenfold since the show, and the emails I have received have (for the most part) comforted me that I did make the right decision. So many more women are now seeking help or speaking out about their pain, even if it's just to family members or friends. This is something no one should feel embarrassed about.
-I am also not going to ignore sex completely. If you heard me on the episode, I always said I could not have intercourse at that time. Our society's general definition of sex tends to be very heteronormative and only concerned with penetration. Just because a women has pelvic floor dysfunction or vaginal pain, does NOT mean she is broken or unable to engage in physical relationships.-Finally, yes I am feeling better after the surgery, but I still have a long way to go. If you haven't been following, the labral hip surgery (which was my second) combined with weekly external and internal trigger point injections of traumeel have almost completely rid me of vaginal pain. What is left now is the sitting pain I feel, normally around my piriformis and obturator internus/externus. I am still getting injections and go to manual physical therapy twice a week. I also have a scheduled pelvic floor surgery in April to repair two tears I have near my pubic synthesis.

I am very hopeful for a happy end of the road, but I know there is still a lot of work to be done and battles to be won. There will be setbacks, but the important thing is to fight through them and realize how far you've already come. When I look back just a few months ago, when they filmed the episode, I see how much I have changed and grown. I am stronger, mind and body.

I just read a beautiful post by Erica, the founder of Mind-Body Wellness. It is called "The Gifts of Illness," which you can find here: http://www.elephantjournal.com/2010/12/the-gifts-of-illness/ I want you to read it for yourself, but it talks about how through physical pain and limitations, we find inner peace, patience, and tolerance. My life was so fast-paced before I started getting seriously ill, and this has given me a chance to take a step back and look at my life. I have had time to reflect, to write, to recognize my life purpose, and to understand why this all happened to me to begin with. I have had incredible lessons in compassion and am now able to better empathize with others and understand suffering. This was not a curse, but all part of my journey. It has molded the person I am today and continues to shape me. For those of you just starting on your journeys, remember I have not gotten to this place easily. If you look back on my entries over the years, I have been in some dark times and fearful moments. There are more to come, but I feel more prepared and more willing to accept them as part of the process.

Reflections and News

Three years ago I was experiencing tremendous pain and kept it a secret from everyone. I remember feeling so ashamed and embarrassed and frustrated. I felt alone and desperately wanted information. Never would I have believed I would end up sharing my story to friends, the blogging community, and now national television. I feel blessed to be part of a growing movement to finally bring attention to chronic pelvic pain.

I want to thank all who were involved in last night's episode. I'm very happy with the way it was edited and presented, especially for such a limited time block. I would love to hear what you all think. Things are pretty overwhelming now- but I will try and answer emails as quickly as I can. I'm so thankful for all the encouraging and supportive words many of you have already sent me.

A quick medical update: I had more injections early this morning. I am happy to report that vaginal pain is pretty much obsolete. All these months of injections have done wonders. There's still a bit of pain at 6:00, but I think with a few more rounds, it too will disappear. My pain is still heavily concentrated right under my sit bones. We are trying injections superficially, and hoping to see some improvement now. My guess is that I won't feel relief until after the pelvic floor reconstruction surgery in April to repair my two tears. It seems that so much of my pain has been caused by these orthopedic issues.

A quick life update: For those of you that do not know, I have decided to go back to school for my doctorate in physical therapy, with hopes to concentrate on manual and pelvic floor therapy. I have been thinking about it for a long time, and nothing has ever felt so right. It may not have been what I studied in undergrad, but I feel having a liberal arts education will be extremely useful. I am getting straight to work- I need to take all my science prerequisites, as well as observe physical therapy in two different settings. My classes start in the spring, and I hope to apply in the summer for 2012 admission. I cannot even express my excitement to have found my life calling and to be able to use my experience to help others. Overall, life seems to be turning around.

Keep fighting,
Tamra

Urgent

Some great news- there is a possibility that women with vulvodynia, etc. might be able to share their stories on a cable series. This would be fantastic for raising awareness and letting other sufferers out there know they are not alone. This is still in the very beginning phases, so they are currently putting together a demo tape, which will only be shown to tv executives. To get this project off the ground, they need women in the NY tri-state area to do a 15 minute interview sharing their story. Again, this is only for the demo- tape, so your interview would NOT be broadcasted or shared with anyone other than the producers. I urge you to please respond and help us raise awareness. It is only a short interview for a demo-tape. Please send me an email or comment if you are interested and I can put you in touch with my producer. If you have any questions or concerns, you can also talk to her about them. Please respond as soon as possible and send this to anyone you might know in the area.

Thanks,
Tamra