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

Dark Night

There is a lot of pain tonight. I have been trying to relax in bed to no avail. I think a lot of it has to do with being sick for the past few days and unable to do my exercises or take my suppositories. A good friend recently reminded me that healing is not a linear process and we will continue to have our ups and downs along this journey.

I'm not one for words tonight. I think the last two poems I wrote sum up my emotions.

I wish for you

a dark night

void of stars.

How else will you see

the moon's white glow

lightly caress

bare black branches?

In the Ring

My life is a constant battle
of bruises and bullies.
Are you fighting too?

Remember, dear friend.
Our scars do not deform us,
they define us.

Go another round.

Injection Day

Confession: It took me a few weeks to finally call and and make an appointment for trigger point injections. I think I speak for a lot of people when I say I hate them, they never get easier, but they are definitely working, so I keep going back. We now want to start doing them weekly since I am making so much progress (yes!), and then slowly cut back to biweekly, and then monthly. I wrote this poem after my appointment yesterday.

Injection Day

I clutch my sweater tighter around my body,
struggling to find warmth and
shuddering not from the morning chill,
but in fear of what is to come a few blocks ahead.

I have been here many mornings,
but the walk never gets easier.
A man on the corner calls out to me.
Would he stop if he knew?

Passing suits push past,
their shoes pounding on the sidewalk.
They race towards their destination
I delay discovering mine.

Couples line the waiting room
Every hand with a companion.
I take out my book and stare at the pages.
I don't even see the words.

My name is called, and I go into the same room
The paper crinkles as I lie down.
Staring up at the ceiling tiles,
I notice there's still a crack in the third row

The countdown begins
1... my arms are folded against my chest
2... but soon grip the table sides
3... as if each needle was the first.

"I'm okay," I say in a flat, steady tone.
The same mantra every time.
I rush to get dressed and quickly walk back.
Same streets, same sounds, same steps.

When I go to the bathroom later,
I notice the small dark stains.
I forgot again.
Another pair ruined.

I have gone through many pairs, many walks.

It never gets easier, but it needs to be done.
Thankfully the next appointment
is not for another two weeks.

"Although the road is never ending
take a step and keep walking,
do not look fearfully into the distance.
On this path let the heart be your guide
for the body is hesitant and full of fear."
-Rumi

Namaste

It seems people are more naturally inclined to expend energy complaining than complimenting. I noticed that when things are going well in my life, I am less apt to update. I realized how important it is to talk about the good times. Recently, I have been focusing on cleansing my life, so I thought it only appropriate to give my blog a mini-makeover. Hopefully you like the new look; I think it's a bit more peaceful. I've also stopped the automatic music and put the player at the bottom of the page, so it's there if you want to listen. Also, some important news... my True Life episode is finally premiering on December 6th at 10 pm on MTV. I am excited in a nervous way because I will be seeing it for the first time along with everyone else, but I do hope it brings awareness to what so many of us are dealing with on a daily basis. Keep your fingers crossed!

Back to life being great. I think the best place to begin is on the elliptical at physical therapy. Last week I begged for some cardio in my workout because I was going crazy from the lack of exercise. No running, no dancing, no hiking, no tennis... between you and me I was ready to just forget the rules and do those things anyway. I was frustrated. So the twenty minutes on the elliptical was the greatest gift my PT could give me. I still remember vividly the first time I stepped up and began to move. I kept my promise and kept the elevation low (sigh) and the resistance low. And it just felt SO GOOD. I cannot describe what it felt like to sweat again, to move again, to feel alive again. It is amazing what endorphins can do.

It's also amazing how much I've grown. Halfway into that first workout, some hot shot basketball player jumped onto the elliptical next to me and started sprinting. I looked down longingly at his elevation, but turned back to my machine quickly. A few months ago I would get try to go as fast and as high as this basketball boy. But new, patient Tamra was just happy for her slow and steady twenty minutes and to feel the sweat pouring down her face. You can't take the competition out of me, but you can alter it. Now I stay in my own world, where I compete against myself and do not compare myself to others. Every time I get on the elliptical, I aim to go farther in the twenty minutes that is given to me. It has been two weeks and already I have been given an extra ten minutes for good behavior. Patience is paying off. I have also lost some weight and slowly fitting back into my jeans that I haven't been able to wear for over a year now. Actually, I found $25 in the pants I finally put on yesterday, so patience is literally paying off.

I think the endorphins have been the jump start to my peacefulness. Not to mention,every time I go to physical therapy I am seeing improvement. At this point my only vaginal pain is directly at 6:00, with the rest of my pain located rectally. My PT is doing a lot of manual therapy to release the muscles, and they are slowly loosening up. I am back on the valium suppositories and they are helping (although I have to wait a week for a new prescription. Turns out the ones I was using expired in June... whoops.) I am also doing manual therapy myself at night, which is pretty simple. You just need gloves and some lubricant. Lie down on your side, and using your thumb, apply light pressure to each muscle, moving around the rim of your rectum. It's important not to engage the muscles too much or you will certainly feel it the next day. I am also continuing my exercises and stretches for my hips and pelvic floor. If you are interested, I can show you. I might even be fancy and make a video of them for next time. I am also started yoga, which incorporates a lot of my routine stretches and is giving me peace of mind. Finally, I have started lifting weights again with my upper body. It's the one thing I am allowed to do full-force, so I am taking advantage with some chest, back, and plenty of arm exercises.

That is it as far as medical updates. I am still driving into Philly twice a week, which is quite the commute, but I am enjoying the long drives with some fantastic music and the solitude of being with myself. I am also working a part time research job from home, so I still feel productive. I am reading a lot, writing a lot of poetry, and practicing the piano.

So, I guess I am trying to say that life is good? I voice some trepidation because I'm in a place that is so foreign to me. My mind and my body have always been prepared for the worse, always stiff waiting for the next awful thing to happen. I think amidst all the appointments, hospital visits, life interruptions, and pain, I had forgotten how to breathe. I cannot describe what I feel now, it is an inner peace that is so refreshing. I think it helps that I am slowing my life down. I am spending nights in my bed, with tea lights dancing in my mirror. Beethoven echoing through the room, a cup of tea, and my notebook. I am going to cafes and other places by myself just to sit and people watch and watch time pass before me. I am no longer a prisoner to it. And I cannot forget the wonderful people in my life who never stop believing in me. I am surrounded by kindred spirits, along with a supportive family who runs with every crazy idea I have. (but that is a story for next time) Until then, namaste. Don't forget to breathe.

"The music is different now. But it's still there."

First an update on the blog- I have added email subscription to make it easier to keep up with the blog. You simply put your email in on the right and will get an email every time I add a new post.

I have been reading a lot of poetry and came across this book online called "Poetry of Pain" by Linda Martinson. She has fibromylagia and used poetry to express her feelings, finding solace in writing. I ordered the book, it's small, but her words are powerful. It resonated with me because I could relate with all the phases of chronic pain that she discusses. I'm going to copy my favorites. Please remember, you're not alone.

Supermarket Concessions

I am paying for my groceries
at the check stand.
"How ya doing?" he asks.
I look at his eyes, tempted
to startle him with the truth.
But he doesn't really want to know.
So I opt for a nice, neutral,
bland word that means nothing.
A fat word that fills the mouth.
"Fine," I say to his shoulder,
"I'm doin' just fine."

Dark Times

I am awash with pain, my tyranny.
It covers me like seaweed,
clinging, stinking;
the salt is in my wounds.

Searing my muscles with perpetual passion,
pain invades my mind,
my privacy.
Afraid I am drowning
when I so want to live,
I cry.

The Yearning

I used to go to sleep
with my head
on his shoulder.
I'd curl into the
hollows of his body
and he'd read to me
from a book
just boring enough.
Oh, how I miss the
intimacies of love!
The prickly outline
of his beard
undulating in the lamplight
as his lips formed words,
the gentle sound vibration
that tickled my hand
as it lay upon his chest,
the soft distraction
of his cheekbone
waiting for my kiss.
Pain,
Oh Wicked Pain,
must you steal this from me too?
Must you dictate
every aspect of my life?
Let me lay
as lovers lie
without your insidious presence,
my head upon his shoulder
once again.

Acceptance

I get so frustrated when I want to work
and I can't because my body fails me.
I grieve for the energy I used to have,
for the days when I would erupt out of bed,
ready to go.

Lost time.
Lost life.

I miss the spontaneity of good health,
when I could do simple things,
like go for a drive,
or dance,
without having to consider the toll
on my body.
I miss the fun.

Still...
I can't let the past rule my today.

So I will recognize my grief,
roll around in it,
and mourn my loss as I would
the death of a beloved child.
For only then can I get beyond it.

The music is different now. But it's still there.

Be ignited

Sorry for the absence. As normal, life has kept me on my toes, but very much off my feet. I was in the hospital for a week with a severe headache and bad blood work. It was a scary time, especially when I got woken up at midnight for a doctor to tell me on the phone I had blood clots in my brain... a diagnosis that was simply "taken back" the next morning. Somewhere a doctor went, "whoops." It's been awhile of not understanding what was wrong with me, meningitis and a rare tick disease were on the table, but after getting some results back today, it seems to be a severe case of mono. So I'm just resting and recovering to get my strength back and going in for blood work every few days to monitor my liver, etc.

This means no surgery in a few days- we'll have to push it back for a month or so until everything returns back to (semi) normal. When I first got out of the hospital I was so relieved and embraced life. That soon transformed into anger and sadness. The whole, "why me," "how much more can I take?" But that has passed quickly and I've moved on to acceptance and appreciation. I am so blessed for the family that continuously takes care of me. I am thankful for the friends who visit me in the hospital, send me cards, come and hang out on the couch at home, call, care, and accept that I have to devote my time to taking care of myself. It is a relief to know they are always there for me and love me unconditionally.

And even though my spirit is growing restless and just wants to get outside and do all the things it loves, I know my body isn't nearly ready. For once, that's fine. If my life needs to slow down, then I am going to enjoy the time with my family, I'm going to write, I'm going to read, and I'm going to live in the moment and not worry about what's going to happen or where my life is going. I'm going to embrace the couch.

I know how scary and frustrating living with pain is, especially when we cannot control it. Yes it's something we have to live with, but it doesn't have to be what we live for. I'm not saying we have to pretend to be happy with the situation or hide from our feelings, but we can look for the little magical moments that make us want to get up in the morning. We have only this life. So cry, laugh, scream, smile, but make sure you allow yourself to feel. I have two things to share with you. The first is an excerpt from a Mary Oliver poem (I highly recommend reading her work.) The second is an original that I wrote the other day while embracing my couch. Warm wishes.

Just yesterday I watched an ant crossing a path,
through the tumbled pine needles she toiled.
And I thought: she will never live another life but this one.
And I thought: if she lives her life with all her strength is she not wonderful and wise?
And I continued this up the miraculous pyramid of everything until I came to myself.

--------------------------

The Field

Barefoot and barely breathing
I stepped cautiously out
into the great, wide field-
my feet roughened by the stiff
blades of cold, dead pasture.

Surrounded by silence only broken by
the wind whispering through the night
and the slow breaths escaping from my lips-
I continued forward, searching for the center.

I felt nothing.

Alone and afraid
I sank to my knees,
disappearing into waves of brown.
The wind stopped and
all stood still, waiting.

Imprisoned by my own thoughts
I ignited my escape,
casting it out into the blackness of the night.
And I continued forward, pausing only to glance back.

I watched the flame become a blaze.

Bathing in its fiery glow
I watched the fire dance
under a limitless sky, as the stars joined in
Even the shadows and the smoke swayed
as the field came alive once more.

Engulfed by the crimson glow
and entranced by its crackled cry,
my breath became a pant-
I closed my eyes, feeling the heat take me.

Be ignited or be indifferent.

And if I were fearless/Then I'd speak my truth

hon·es·ty (n)
-the quality or fact of being honest; uprightness and fairness
-truthfulness, sincerity, or frankness
-freedom from deceit or fraud

I consider myself an honest person. I might not be as open as others, but when I do share information, I try to be as sincere as possible. I have been flung into a black hole the past two weeks. I am not sure where I am, what I'm doing, how to get out or stay grounded. And while I'm spinning in this celestial vortex, I've realized how dishonest I am with myself. What is truth? Can I be truthful to everyone but myself? This is an intervention of myself instigated by myself: an attempt to admit my true thoughts and feelings, in the hopes that I can one day embrace them.

1. Sometimes I get really tired of writing in this blog and it just feels like a burden. I have enough information that's happened in the past two weeks to write a series of posts, but I don't feel like going into too much detail. I find it exhausting. So here's the short version: I started my new job in August. I got placed out in Denver, CO and was in the office for two weeks. Towards the end, I was in more pain then I have ever been in the four years since all of this started. I could not sit, I could barely walk, I could not function. And I kept suppressing it, because I had found an apartment and started my job and was supporting myself. I was so happy to be an adult and taking care of myself and no longer being a burden on my friends and family. I wanted to badly to be self-sufficient. I call my parents exactly two weeks ago, late at night. (They were in my car driving it cross country with all my things.) And while I'm sitting on the bathroom floor, my body pulsing with pain, and tears rushing down my face, (remember, I never cry), I told them to turn around and go home because I could not do it anymore. I could not live in Colorado, I could not do my job, I could not be independent. My parents, being the most supportive ones you could ever ask for, calm me down, drive home, and I quit my job and fly back home to finally take care of my health. Believe me, it was not easy admitting to myself that I was unable to pursue anything but getting better. Now I'm back home, seeing my specialists and ACTUALLY putting my health first. I feel like I've always said that, but other things have gotten in the way- school, tennis, social life, just the need to feel normal. I saw Dr. Kellogg last week who said my body is an absolute train wreck. It is at least nice to be validated, to know that I did not make this move back home an additional dramatic turn in my story's plot. I got 15 trigger point injections. (Let me tell you that was fun.) And now I'm seeing her every three weeks and my PT twice a week. Fast forward through this week, where I met with Dr. Meyers (you might remember him from last April- the surgeon I went to see about my pelvic tears.) We scheduled surgery for October 19th. It's going to be a bilateral pelvic floor repair, with bilateral abductor release, and steroid injections around the pubic synthesis.

2. I think I might be turning into a crier. I've been tearing up almost every day, but the waterfalls really came out one night when I was at home. It was ironic because I had been listening to Sara Bareilles' new album Kaleidoscope, with the song, "Let the Rain" on repeat. The lyrics were perfect and were exactly how I felt:

And if I were fearless
Then I'd speak my truth
And the world would hear this
That's what I wish I'd do, yeah

If my hands could hold them you'd see
I'd take all these secrets in me
And I'd move and mold them to be
Something I'd set free

I want to darken in the skies
Open the floodgates up
I want to change my mind
I want to be enough
I want the water in my eyes
I want to cry until the end of time

I remember crying that hard only once my entire life and that was when I first found out about vulvar vestibulitis and my specialist at the time told me it was something I'd have to deal with for the rest of my life. I rode the train back to my ex-boyfriend's house and just could not stop sobbing. The same thing happened this time. I let things get built up inside of me and cannot seem to let them out. I picture it as some dark smoke that slowly fills me up, twisting and turning through all my body's crevices. It suffocates me and clouds my mind and just overtakes me.

3. My 50% post was a lie. The theory and my intentions were sincere, but my attempts at implementation were horrendous. I don't do 50%. I try and I've been trying harder, but it's hard to switch from a 110% mindset. I want to do everything. I want to succeed. I want to be independent. I want to help others. I want to be strong. I want to achieve my goals and surpass my dreams. I want to outshine my own and others' expectations. Right now I am allowed to do three stretches twice a day. I cannot sit for longer than an hour or two, which makes my driving and social time limited. I spend a lot of time in bed. I ice as much as I can, and I don't do any physical activity beyond walking. I am going crazy. I hate it. I am confined and am losing sense of the person I used to be. I am afraid I'm going to lose her.

4. I feel like I am a burden- to my friends, my family. They constantly need to take care of me and I am scared they are going to get fed up or already have. I am currently living at home and crashing at friends' houses nearer to my doctor appointments. I hate asking to stay, not matter how many times I am reassured that it's not inconvenience. I want my own space and my own chance to help those that have given me so much.

5. I'm scared- of being alone for the rest of my life, of never knowing what's wrong with me or how to cure it. I'm scared that I'll never be good enough. Almost everyone I know has coupled off and found someone- in fact almost all the people I used to date. I want someone. I want to be taken care of- I want to have someone holding my hand in the waiting room, being there out of love and not obligation. I want to be wanted without feeling guilty.

6. I have a love/hate relationship with my valium suppositories. I am back to using 10 mg every night, alternating between the front and back. On the one hand, I do think they make a difference and are helping me. On the other hand, they limit what I can do and how well I think. I lose my train of thought and I have crazy dreams.

7. Recently I've been going out on dates with myself to cafes or stores with some silly romantic notion that I am going to interact with someone. I think I just miss flirting and dating and relationships and my body feeling like something other than a medical lifeless corpse. When I saw Dr. Meyers on Tuesday, he made me take off my pants while he and the nurse were in the room. I've never had to do this before, but he wanted to see how my body moved and how I was able to function. It wasn't that I felt uncomfortable- more that I felt upset my life has resorted to stripping and picking out my underwear for doctors.

8. I feel like a failure. Yes, I know people have repeatedly told me that I am not. But I do not quit things. I am almost embarrassed to walk back on campus or be around people from college because I feel I let everyone down. I have no plan right now. I just found a side research job that should keep my mind active, but I have no career plans. I want a plan- I want something to strive for. I want to start writing a memoir- goodness knows I have enough material for it.

9. I feel like this post was a whole lot of whine.

10. While I feel like I'm in a black hole, that doesn't mean there's bursts of shooting stars around me. I am so happy to be back home and see my family and my friends and be with my support system once more. They bring me glimmers of hope, happiness, and brighten an otherwise darkened void.

So there's my dose of honesty. I'm hoping some of you will comment back with some things you want to be truthful about so I don't feel so alone. It doesn't matter if you aren't suffering from this condition- let's have an open forum and be honest with ourselves, even for a moment. If you want, do it anonymously- write about anything. Consider it a PostSecret that saves you a stamp and is guaranteed to be posted online.

Doctors take note.

In preparation for a new book she's writing, Susan Bilheimer, author of Secret Suffering: How Women's Sexual and Pelvic Pain Affects Their Relationships, is conducting a survey examining how medical professionals treat women with invisible illnesses.

Women with vulvodynia (and/or other chronic disorders) are invited to participate in the survey, which can be found at:
http://www.surveymonkey.com/s/TDWVHDW.

I took this survey today and I encourage you all to do the same. Any information we contribute is important to promote awareness and new research. Taking the survey was a little difficult- I had to discuss my thoughts about invisible illness and how it makes me feel. I thought the question about if you purposely dress down and look disheveled for a doctor visit was extremely interesting. Because it happens. I've caught myself doing it before. Sometimes I just want to look sick because I'm tired of people telling me I look so healthy. To remind them that every day is a struggle. Doctors and specialists especially because I've been to the ones that do not believe me. I also like this list of what doctors could do to improve their treatment of women with chronic pain- but this list can be applied to anyone's expectations of medical treatment.

So, doctors, take note. We want you to:

-Take more time with us
-Improve bedside manner
-Select compassionate and patient staff
-Know what questions to ask
-Take our concern about pain more seriously
-Validate our experience
-Have a better understanding of the difference between acute and chronic pain
-Be aware of medical knowledge about these conditions and treatment
-Have the ability to send us to a network of specialists for different aspects of treatment (team approach)
-Listen to, and believe us
-Understand more about the difference between pain and suffering

Please hold, your call is important to us.

I feel like my life has been put on hold these past few weeks. I started my job, and have since been to Boston, Milwaukee, and now finally in my new home of Denver, CO. Surprise! I moved halfway across the country. Except not entirely. The Mile High City is great, I'm just still living out of a suitcase and crashing on a couch until I find an apartment. (Great time for anyone living in Denver in need of a housemate to speak up.) Health has been put on the back burner until I am settled. I have two names for physical therapists in the area and will try calling them by the end of the week, so I can continue with hip PT. I'm also researching specialists in the area (let me know if you have any information.) The hardest thing I'm finding right now is balancing my new job with my health. I'm working long hours, but I need to find the time to do this. I'm so eager for this to be over with. I have been feeling pretty good the past couple of weeks, but I know there's a lot of work left to do. I think the most difficult part of moving for me is not having a solid connection with anyone in the area. Don't get me wrong, I've already fallen in love with the mountains. But no one here knows about me or what I'm going through, and now I have to go through the process all over again of telling people. Eventually. Hopefully. Maybe not. Please hold.

50%

We are told when we are young, from our teachers, parents, and coaches, that 50% is less than average. 50% is weak. It is cowardly. 50% is not even worth it. 50% is failure.

This is the mindset I combat every day as I am recovering from two hip surgeries. I'm an athlete, a competitor, and doing anything less than 110% is against my nature. I want to push myself and give my all, but I keep learning how impossible that is right now. It's the one lesson I never seem to learn.

It's been a rocky road the past couple of weeks, which is why I've distanced myself from blogging. Things changed so drastically day to day, that I didn't even know what to write about or how to explain what I was feeling. The biggest piece of information is not even relevant anymore, but I'll mention it anyway. Way back ago, I tested positive for an autoimmune disorder- Seronegative Spondyloarthopathies. But, the deal was people test positive for SS and don't actually have the disease. I went to a couple of doctors- I had a bad experience at a few specialists and was trying to get answers. Finally, after three long weeks of dozens of x-rays, blood work, being poked and prodded, told I was going on treatment for a year and looking up the possibly crippling side effects of the disease, my dad got tested as well. We found out my family just carries the gene, but we do not in fact have the disease. By the end of it all, I was exhausted and it was just another thing I didn't have to cross off the list.

So where am I now? I am focusing on hip rehab, mainly my right hip, but my left has still not recovered fully. I still have around a month left before I can start light running, and four more months until I should be completely healed, and possibly ten more months until I see some results. Let the waiting game begin. I still have some tears in my pelvis that I could have surgery for, but we are waiting until my hips have recovered a bit more before diving into anything else. I also still have vaginal pain I need to work on after my hips are a bit more stabilized. I was very happy with the results of the injections, so I'm sure I'll start them up back again. Finally, my sitting pain is still horrible. I'm hoping once my hip is healed I will see some relief, but if not, it's back to searching why I have all of this pain.

A few weeks ago I was in New York City to see my hip specialist and a play at night. The wonderful transportation system that is NJ Transit ended up breaking down and running behind for over two hours, so I missed my appointment. I was furious. Now with ticket prices going up, it's $30 to get into the city, not to mention $6+ parking at the train station. Not to mention the amount of time out of my day was wasted. At least I had the play that night, but I stupidly walked 60+ blocks once in the city. I thought it would be good exercise for my hip. Wrong. I was hurting badly for days after. That's the point where I finally realized what I should have a long time ago. I am not invincible. Pushing myself the way my mind and body were used to is impossible. The more steps I take my body forward, the more steps my recovery is taking backwards.

The past two times at physical therapy, I have been a changed person. I originally set the elliptical to 30 minutes, which I would usually follow with a 20 minute bike ride. I stepped off the elliptical at 15 minutes and called it a day for cardio. I felt horrible, but I knew it was the right thing. I'm beyond aggravated that I am out of shape. I don't fit into a lot of my pants anymore, I can't go dancing, no rock climbing, no runner's high after a difficult workout, no adrenalin. I feel weak and powerless. But, after the past two sessions, my body is not in as much pain.

As much as we are told that 50% is failing and as much as we cringe when we say 50%, it's not always true. 50% is not half-speed; 50% is halfway there. 50% is safe. It is smart. Any maybe, just maybe, slowing yourself down to 50% is a display of true strength.

I'm gearing up in a few days for my first day of work and my next adventure. I still don't know where I'm going to be placed for work- the possibilities are Portland, ME, Concord, NH, Boston, Providence, Hartford, Trenton, Philadelphia, Pittsburgh, Wilmington, Baltimore, D.C., Chicago, Denver, San Francisco, and Portland, OR. It's going to be a fast and abrupt move, but I am anxious and excited. This is my chance for a new, clean slate. If I am moving way, I'm going to need recommendations for doctors in these new areas. Please let me know if you have any suggestions. Also, the True Life episode was officially pushed back to allow for adequate promotion time, but you will be the first to know once I find out the new air date. Thanks again for all the emails- I'm running out right now, but will be back tonight to answer some more. Keep fighting.

Vacation

Hello all.

Found limited Internet here in Canada. On vacation for another week but once I get back I will properly update. I just received all your wonderful emails and plan on answering the moment I return.

Tamra

Update, Part I

It's only been a week, but as usual, I have a lot of information. I didn't want to try and squeeze it all into one big post- I find people are more apt to read if it's shorter and concise. I wanted to copy something Caryolynn from Cherry Hill. She is a therapist and you can find her website at www.livefullycounseling.com. She emailed me and said the following:

I'm particularly interested in helping women who have lost interest and pleasure in sex and working with their partners who navigate that journey with them. There are so many reasons a woman might avoid sex, it could stem from exhaustion, to relationship problems, to painful sex experiences, and whatever might fall in between. I enjoy helping these couples reconnect, strengthen their relationship and enjoy a fulfilling sex life!

I know you are all from across the world, so Caryolynn might not be the answer, but therapy could possibly be. I know I shouldn't be talking since I stopped going after two visits to someone near school, but I think it's important to do. I'm having difficulty opening up to anyone, so I know it's something I should work on and I urge you all to do the same. We have control over our life. Maybe not medically speaking, but everything else is ours for the taking. And don't you think life has taken too much from you already? It's time to make a positive change.

I'm exhausted, but I'll update tomorrow about all the new medical information I found out this week. Also on a personal note, I have just finished filming for a True Life episode for MTV. It's actually called True Life: I can't have sex, but it centers around me and two other women with similar medical conditions. It's set to premiere July 22nd at 10pm. I'm hoping it raises awareness for all of us, so check it out if you can.

Freedom

I want to begin by thanking my family for taking such good care of me through this recovery process- I say it repeatedly, but my strength comes from them. Thank you also to all my friends who have come visited me- some have come for almost every surgery I go through. It's important for me to realize that I'm not going through any of this alone, and most importantly that there are more levels to our friendships. Finally, a big thank you to all of you who have sent me warm inspirational emails before and after my surgery. Every time I get an email I remember that I'm not alone and what I'm doing is making a difference to some people.

Recovery is going really well. I'm in a great place and looking forward to the rest of the summer. My surgery was very successful- I did indeed have a big tear (bigger than my left hip) that was repaired, as well as a bone spur that was shaved down, and a tendon that was released. After the procedure, I woke up in the recovery room in a lot of pain, but it lessened once they were able to give me medication. Again, the Hospital for Special Surgery was wonderful and I continued to be impressed by them. It was a same day procedure, so I came home and have since been resting and improving. Things are moving along a lot faster than last summer. I was off pain medicine in two days and have been walking up stairs. It's been a little over a week, so I got my stitches out today and started walking without crutches. Now it's just a matter of strengthening my muscles once more. I'm starting physical therapy and planning on going three times a week and dedicating my summer to rehabilitating correctly.

I have an appointment in a week with my rheumatologist to go over my x-ray and bloodwork results. I'm anxious to see if they found anything. I'm also going to keep an eye on my pelvis, and might need an additional surgery to correct those tears a bit later on. I keep getting asked if the surgery has made my pain go away- no results yet. But it usually takes up to a year to finally see if it worked. Right now I'm not focusing on how my body feels- it still needs time to recover and regain its strength.

I haven't worked out in a long time. I miss the adrenaline and sweat and aches. It's frustrating sitting and waiting when all I want to do is go out and enjoy my remaining time before I begin my job. A big part of me is missing. I feel pretty vulnerable without it. And it doesn't help that I still need to be taken care of. But for now I'm going to focus on regaining my strength. I can't work out my lower body too much, so I'll compensate with my upper body. And I might not be able to do the summer activities that I want, but I will improvise. So take that, life.

Learning to walk (again)

Yesterday was hip surgery, take two. This time on my right leg. I can't say I was thrilled going into it. I was not happy about losing another summer to sitting on the couch and not being able to do anything without assistance. I was not happy about having to handle the pain all over again. But at the end of the day, it really didn't matter what I felt. It was another tear and it needed to be fixed.

I spent the day before surgery playing tennis with a great friend. I could not stop smiling- I wasn't able to exercise for so long, and now to feel the sweat pour down my face, to be able to run, and to breathe... this was the missing part of me that I had forgotten. It was calming and it reminded me that it'll always be there. I have been pretty upset recently that I turned into this out-of-shape blob. Exercise and athletics mean so much to me. They are a chance for me to challenge myself and to feel alive. Most importantly, they were such a good distraction from the pain I was feeling.

After playing tennis, I calmed down significantly and was ready to mentally prepare for the next day. I had already gone through this before, so I knew what to expect and I knew I could handle it. Plus, another surgery meant I'd be getting matching scars on either hip. Imagine the stories I can tell of how I got them.

My parents and I woke up very early yesterday and headed to the Hospital for Special Surgery in NYC. The whole day was deja vous- I remembered so much of it from last summer. It's always eerie walking into a hospital holding crutches, walking just fine, but then leaving in a wheelchair.

Once we got there, it was the same drill as before. Yet again, the HSS was so well-run and organized, as well as kind and understanding. After a bit of paperwork in the front, I am taken back to my own room where I get dressed in the lovely paper gown and shorts, with the lovely blue shower cap. I have to go to the bathroom to take a pregnancy test (standard procedure for all females) and then I'm brought back in and an IV is started. The nurse asks me questions, as well as the physician's assistant, and the OR nurse, and I sign more paperwork. I also get visited by a nurse to wash my hip, a physical therapist (I'm already an expert at crutches, thank you very much), the anesthesiologist's assistant, the anesthesiologist, and of course, my surgeon. After this big party, I walk myself into the OR, get on the table, and the anesthesiologist begins. After I was sedated and asleep, he gave me a spinal epidural (big shot in my lower spine) in order to numb me from the waist down.

Next thing I knew, I was in the recovery room, disoriented and tired. I could not feel anything from the waist down, but slowly I got my feeling back. My mouth was very dry, so I started to drink some water and eat crackers. I was allowed to have one parent at a time, so each came in to hold my hand and keep me company. They are both wonderful and have been the biggest and greatest support system in my life. After I was up for a few minutes, I started to feel intense pain in my hip. I was given two shots in my IV and two pills. The pain stayed for awhile, but it was pretty easy to manage and soon started to wear off a bit. I wanted to get out of there as soon as possible, so once I could feel my legs and wiggle my toes I was allowed to leave. My dad went to go get the car, and the nurse wheeled me down in the wheelchair.

Now I'm home and going through the healing process. My surgeon told my parents that the tear in my right hip was even larger than my left hip. This also means I now have the two biggest hips he's operated on. Not only was the tear huge, but I had a bone spur that was pressing into my tendon. That was shaved down and my tendon was stretched. He also saw a lot of inflamed tissue because of the tear, but thankfully none around the joint, which means I did not have arthritis or anything of the sort. My surgeon also felt that the tear was so bad that it definitely could be causing all of my pelvic pain. As happy as this makes me, I still think there are more things we have to fix. But I am ecstatic that I am on the right step and that the tear was so significant. I knew this months ago and tried to convince that horrible hip doctor in Princeton. Upon examination, he told me I didn't have a tear and if I did, it would be small and not an issue. I had to beg for an MRI. You can bet I will be writing him a nice letter now that I just went through extensive surgery that he was adamant I would never need.

My pain right now is not bad at all. In fact, I'm doing much better than last year. I am able to slowly move on crutches, and don't need my parents to bend down and slowly push my leg forward. I just need them to help me bring my leg down from the couch or the bed and then put it back up once I go to the bathroom. The one thing different from last year is I'm having really bad back pain from where I was given the spinal epidural. There was a little bit of blood in the hospital, and now it just aches and I have a dull pain, which I was told should be expected. I'm combating this by icing it and my hip as much as possible.

I think that's all for now. I'm in good spirits and ready to finally get myself healthy. I'm so overwhelmed by all the warm wishes, phone calls, and flowers I have received. I am the luckiest patient to be surrounded by so many genuine people.

Sidenote:

I forgot to mention, the National Vulvodynia Association recently sent me this email about important work they are doing. If you could take three minutes of your time to send an important message to your U.S. Senators and Representatives, I know a lot of us would be very grateful. Email is copied below:

Dear NVA Friend,

Please take 3 minutes today to send an important message to your U.S. Senators and Representatives by clicking here.

On Wednesday, May 19^th, the NVA, Endometriosis Association, CFIDS Association of America and The TMJ Association, will launch the Campaign to End Chronic Pain in Women at a Capitol Hill event, held in cooperation with the Congressional Caucus for Women's Issues. At the event, we will release the Campaign's groundbreaking report, Chronic Pain in Women: Neglect, Dismissal and Discrimination, a short film entitled, Through the Maze: Women and Pain, and a new web site. (See 'About the Campaign' below.)

Please take a few minutes right now to contact your Congressional Representatives with our Action Alert, asking them to attend or send a staff member to this important event. Thank you for your efforts, and please stay tuned for more information on our campaign to promote research on overlapping pain conditions.

Out of the Woods

I cannot explain how stressful and painful the past month has been, but I think all that matters now is that I'm out of the woods. I'm sorry I haven't answered any emails- I was in pretty bad shape. I'm much better now and you should hear back from me within the next couple of days.

Now that school is over, stress has just been lifted from my shoulders and I'm able to look back when I was at my worst and analyze what happened. When I say my worst- I mean it. I needed almost 24 hour support. My parents were constantly driving up, my friends were taking care of me, I was at one point hitting my arms and bruising them because I was in so much pain. I ran away one night, I didn't interact with people, I ate horribly and just couldn't take care of myself. Which is probably the most frustrating part. My health has just been getting worse, sitting at most time is almost unbearable. I stood up for most of my remaining classes. But I realize now that doing that was okay. Everything I did to get by was okay.

And so, I want to tell you all that it is okay to be at your worst. To feel so trapped and pathetic that you just want to curl up in bed and never leave. It's okay not to want to interact with people or be social. It's okay to feel pain, and it's okay to find other ways to distract you from that pain. It's okay to lose control and run away for awhile. To lean on your friends and family, even though you have been for weeks or months or years. It's okay to be vulnerable and ask for help and see a therapist. It's okay to shut yourself down and do whatever you can to just make it through the day. Eventually you won't be living day to day.

I made it through the semester. Just barely, but I made it. I graduated and now have a fresh outlook. My health is poor and I haven't been able to do many of the things I love. But I'm no longer scared of losing those things I am passionate about. I thought quitting tennis was difficult and unsure what my life would be with that piece missing. But, you compensate with what you have lost. I wasn't allowed to exercise and live that active lifestyle, so I poured myself into academia. I might have gotten a little too obsessed with my thesis, but it was the driving force. It was my chance to prove myself and test my mental limits, since my physical had to be put on hold. And let me tell you, it was all worth it on graduation day when I stood there in front of the crowd and was recognized for my accomplishments. I think I realized no matter what life decides to take from me, I will find something else to do instead. And I will do it damn well. You can't take the fight out of a fighter.

There's lots of updates as far as health news. I got my pelvis MRI and there are tears. Dr. Meyers was puzzled by my case and wants to wait until after hip surgery to see if I would need another surgery on my pelvis. He did want me to get looked at by a rhumatologist to rule out auto immune disorders. He was concerned that I have so many tears at such a young age.

Today I went to go see a rhumatologist, right next to Dr. Kellogg on Broad St., at Hahnemann Hospital. The appointment did not give me much information, but I'm getting a series of test (x-rays and bloodwork) and should know more in a couple of weeks. The doctor said she was puzzled by my case and it was very rare, so she brought in her chief and they both took a look at the medical mystery and tried to brainstorm ideas together. If only I had a dollar for every doctor that told me they were puzzled by my case... It's getting very frustrating and I know it's no one's fault, but it's the last thing I want to be told right now. I just want answers. Badly. I don't care how bad they are, I just need to be told something so I can overcome it. The consensus after today is that there are definite problems why I have tears in both my hips and pelvis and have inflamed tissue and degenerative bones. Hopefully we'll learn something new after all these tests are done- my doctors have a few ideas of possible auto immune disorders I could have, but they said it's unlikely.

Right now a lot of focus is on my pelvic floor and sitting pain because vaginal pain has improved. After my last visit with Dr. Kellogg, it seems the tromolyn injections did work and my sensitivity went down tremendously, to the point where I only felt direct pain at 6:00 on the vulva, instead of 4:00- 8:00. At this point, most things are on hold and the focus is on my right hip surgery. It's coming up in two weeks, so I'm trying to enjoy my summer before I'm back on the couch.

I'm still scared, but ready to take whatever life throws at me next.

Tell the puppet master I am through

I went out driving tonight

Desperately seeking the end of the road.

I kept searching

The further I went, the closer it should be.

I am lost somewhere on that road

Unable to turn around

Unable to see how much further I have left to drive

Staring at the passenger seat

as empty as my head

I feel everything

I think nothing.

Where am I?

-------------------------------

Give me the chance to climb

or I'll suffocate in this altitude.

Give me the chance to exert myself

or I'll forget what my body is capable of.

Give me the chance to feel

something other than this constant pain.

Don't let it dominate my life

I already feel myself slipping away.

Don't let it consume me

I have higher aspirations.

Don't let it take my voice

I have more to say.

Do we define our actions or do they define us?

Who has control?

Tell the puppet master I am through.

-------------------------------

If I am going to fight,

at least let me see my enemy.

If you do not show yourself,

I will go wild and swing blindly.

The V Word

I don't have much time to write, these next two weeks are filled with due dates and appointments. But writing usually gives me some sort of clarity, so off I go.

A lot has happened, so I'm just going to rapid fire here to catch you up. I do have a big tear in my right hip as well. I'm scheduled for the same surgery I had last summer on June 4th. Goodbye summer plans. But I'm grateful for the time I have before my job starts in August. I'm just anxious because it's going to be a process going through the same surgery again. At least I know what to expect.

I am also meeting with a new specialist to address the tears in my pelvis, which I think I will also need surgery for and that would have to happen before hip surgery. I am getting another MRI/consult next week with Dr. Meyers in Philadelphia. I'm very interested to see what he says.

I have not been taking medication recently because I want my mind to be clear as I write my thesis. This means I'm in more physical pain, but I've been finding ways around that. A good friend led me to this website, which has been a lifesaver. They are ice pack pads essentially, and pretty discreet and great for class. They are much easier to hide with baggy pants, but either way, they make sitting a lot easier. I go through about two a class and highly recommend them.

There's a lot of feelings right now, but I don't have the energy or the time to go through them all. I have a lot of stories, but for now, I will leave you with the one from last night. It was my senior WGS class capstone activism project. It was called the F Word Experience. The "f" word- feminist- is not so agreeable with others. It remains a loaded word because it carries many negative (and untrue) connotations. Our class wanted to change this so we had a big event with provocative feminist artwork, and then an event with a video, keynote speakers, personal stories, and dialogue.

Last night I was one of the keynote speakers and I talked about my story, my "V" word. I was very nervous to read it in front of a large-scale audience. It's one thing to write a blog and hide behind my computer, but it's another to stand up and physically speak in front of a crowd. Making up the audience were people I knew, strangers, best friends, professors, high level college authority figures. Some knew my health story and some did not have a clue. I wasn't just nervous, I was terrified. I wanted it to be received correctly. I wasn't looking for pity, I was looking to be empowering and to spread awareness. It was difficult reading the speech because it's always difficult re-living my story. I especially got choked up when mentioning the strong support system I have who was there to support me that night because they have saved me and they are the ones that get me through. After I spoke, I thought I would feel a wave of relief, a lessening of my burden. But I didn't. I got back to my seat on stage and I could not look anyone in the eye. I kept my eyes on the floor because I was too terrified to see people's reactions. What were they thinking? What were they feeling? Is this now how they saw me? I keep saying I don't want this to define my life, that there's so much more to who I am. But lately it has taken over. I received such kind words after the event, but I was still nervous, and I'm still shaken up as I write today. It was an emotional experience, but in hindsight, I'm so glad I was able to do it. I spoke last night for the women who email me who can't even tell their families or friends. I spoke last night for all of us. And this is what I said:

Coming into my freshman year of college, my life was dedicated to activism. I was extremely involved in global organizations, working with young people in war-torn countries, and planning on a career as a diplomat.

This was my life when suddenly I had to turn the attention to within, to myself, which was very unusual for me. I had to put aside my passion of helping others and instead had to become rather selfish and focus on myself. I could not go out and solve the world’s problems without first solving my own.

It was at this time, that my vagina become my world, quite literally everything centered around it. And now, more than three years later, it is still my world. I am conscious of my vagina every second of every day.

This is because during my freshmen year, I experienced a sharp vaginal pain randomly one June afternoon. My life from that point changed forever. The person I am today has been shaped by my struggle, by my battle with my vagina. Over the course of six months, the intense pain I experience daily was misdiagnosed five times. The medical community did not give me answers; everyone was puzzled. Gynecology experts simply waved me away and assumed I was either making up my pain or suffering from the side effects of birth control. One horrible night I was in such intense pain that I was rushed to the emergency room and rudely treate by the male attending physician. He automatically assumed I had an STD because I was complaining of vaginal pain. While suffering from physical and mental pain and confusion, I found myself on the defensive, with my vagina being continuously sexualized, especially by the medical community. I realized at this time how taboo the vagina is and if I were to survive, it would be something I must overcome.

It was not until my sophomore year that I was properly diagnosed with vulvar vestibulitis, a chronic pain condition almost unheard of, yet over a million women knowingly or unknowingly suffer from it. I say some unknowingly suffer from it because there are women who are either too afraid to talk about their pain or are just unaware that their suffering is shared by others. Though it was a relief to finally have a diagnosis and answers, I still had the burden of keeping it a secret from family, friends, and professors simply because it had to do with my vagina. I felt nervous and embarrassed and wished it was a chronic back condition so it would be easier to talk about. I could easily say why I needed an ice pack for my back, but it was very uncomfortable explaining why I needed an ice pack or cushion for my vagina. Then I had my f-word epiphany: I realized that this had to change: I had to help shift societal views of the vagina.

Vagina, vagina, vagina. This is the V word everyone so cautiously avoids. Like the F word, it has many incorrect connotations, and through my experience, I more than ever want to reclaim it.

It has not been an easy process. My diagnosis has since shifted and I am consciously seeking new doctors and new answers. I am tired of carrying the burden just as I am tired of asking for help and being in pain. Many people have not been understanding. But many more have and I am eternally thankful for their support.

Though it is a long struggle which I am still battling, I am no longer nor embarrassed of my vagina. I started a blog three years ago originally intended as an outlet for myself, which has since turned into a support system for women around the world. The intro at the top is the epitome of my story here today: “Vulvodynia is a chronic pain condition affecting millions of women in our world today, yet it continues to be ignored. There is no current cure. In November 2007, I was diagnosed with vulvar vestibulitis, a subtype of vulvodynia. This blog exists to spread awareness because we’ve been silent for too long. I write to expose a taboo subject. I write to form a knowledgeable and supporting community. I write to encourage myself and others. I write in the hope that one day I will write no more.”

After this blog, I no longer hide behind my vagina and hope that some day all women are comfortable enough and free to talk about their vaginas in a nonjudgmental world. This is my wish. This is my expression of feminism.

I dreamed a soul sister

This post is over-due and there's a lot for me to get out. It's not going to be very cohesive because the last few days have been a polarization of personalities. What I mean is right now I feel there are two very different people inside of me. There's the Tamra that knows what's wrong and is trying to stay positive and motivate herself, but there's also the Tamra that is so incredibly frustrated, so pained, that she does not want to be or do what others expect of her. It's been a battle in my mind over the past few days and that can best be described with the songs I Dreamed a Dream from Les Mis and Hey Soul Sister by Train.

Let me explain. Music for me is a release. Music is like poetry- I look to it to find the perfect representation of what I'm feeling. I look to it to uplift me, because somehow if I find the right lyrics, the right beat, it transforms my life and I'm taken to a different place. But there are times when I just feel so lost and afraid and alone that I look to it to commiserate with me.

On Wednesday I had my daily injections, but it was a very different visit. I was having such issues sitting leading up to the visit and quite literally could not get through my classes. I was in so much pain I had to stand, which I am still embarrassed to do. After a check up, we realized my obturator externus and obturator internus muscles were highly sensitive. When I say highly sensitive, I mean when Dr. Kellogg lightly touched them, I jumped off the table in pain. She decided to give me some injections deep into these muscles to try and help me sitting. During the first injection I broke down. I can count on my fingers the number of times I have broken down in doctor's offices, but once I started, I couldn't stop. It was because of the pain at first, but then as she continued, I couldn't help it. I looked at her and she was upset for me and understood everything. She said, "You're tired of this, aren't you?" That's exactly what it was. I am tired. I am broken down. I am defeated. I am tired of no answers and false hope and working hard and putting in the time, yet I get worse. After the four injections in the muscles she asked if I wanted to stop for the day because it was rough and painful and quite enough to go through. I told her might as well do the vaginal injections since I'm there. After those, we talked about much more aggressive treatment, since my muscles are some of the worst she's seen and she is very upset that nothing is working. So right after I graduate we'll be more aggressive, meaning I have to stay here the entire summer for treatment and PT. Fine. All my plans for the summer are ruined, but I understand that health comes first. Fine. But I was upset, so I collected myself after the appointment, waited for the bleeding to go down, then walked back to my car. Of course the one day I would have called a cab, I couldn't find one. Then I rushed back to school to go to staff meeting, and just blasted I Dreamed a Dream on repeat. I felt the same frustration Fantine sings about.

But the tigers come at night

With their voices soft as thunder

As they tear your hope apart

And they turn your dream to shame...

I had a dream my life would be
So different from this hell I'm living
So different now from what it seemed
Now life has killed the dream I dreamed.

Now I understand that's not healthy and not the mindset I should be taking. So after my meeting, the other Tamra quickly took over and I started listening to Hey Soul Sister on repeat. And I listened to it for the next two days and that song is what kept me thinking positively. I started thinking about new plans for my summer- I couldn't do anything athletic, but there are other options. What books could I read? Could I do research with a professor, see old friends, get better at chess, finally learn to cook... I started to plan and found myself calmer and under control.

Fast forward to Thursday when I get a call from my doctor. You might remember him from a previous post as the one who thought I did not have a tear in my right hip and who thought I should be working out more to get in better shape and my pelvic issues shouldn't be a problem. Well, turns out I do have a tear in my right hip. And my MRI scan came back with a variety of other problems- I have a small tear in my pelvis, it's inflamed and there's fluid, etc. etc. The point being that I was right and that there are reasons for my pain.

I sent my MRI reports to my specialist, my PT, and my hip surgeon and I should be hearing back tomorrow if I'm going to need (yet another) hip surgery this summer or what the course of action is. I am going to get them all to communicate with one another so we can finally get on track. Please.

So right now I'm on the eve of finding out a lot of information (hopefully.) It's been a rough weekend. I did not feel like picking myself up anymore. I am sick and tired of things being wrong. I am 22 years old. I am supposed to be graduating in a matter of weeks. I am not supposed to be worrying about my health like this for another 40 years. Right, I know, I know. Self-pity is worthless. But I know these things and I Dreamed a Dream is still on repeat. I can't get my head out of this place right now. I just want a normal life. So desperately. I do not know what I am going to do about class tomorrow. I can't even fathom sitting for a little, not to mention five hours of class. I don't know. I am losing it. I am. I am sick of keeping it together. I know what is expected of me. I sat down and I tried to write my thesis this weekend because I just want to finish and turn something in that's representative of all my hard work these past months. But I just sit and I can't write. And then I can't sit. And I can't focus. And maybe that's partly because of the medicine I'm still on. But I just don't know. Too much has been thrown at me all at once and I just want graduation to be here and to walk and to be done. And at this point I don't even know how I'm going to do that.

I want to crawl into bed and not leave. I want to run away. I want to feel pain elsewhere because I am tired of feeling the same pain day after day. I want to stop asking for help. I want to stop needing the help. I feel so cold right now and shut off. I don't want to be social and there are very few people, if any, that I want to let in. I'm tired of hearing that I am a strong person and that I am going to get through it. I don't want to follow anyone's expectations anymore. I have emails waiting for me to answer that I feel incredibly guilty about. I want to be a role model, and I want to encourage people having similar experiences, but I can't be that person today. I want to lie here and I want to just... I am falling and I can't stop myself anymore.

Lyrics

I've had a few requests for the lyrics to Kayla's song, so I'm re-copying them here.

Isn't it easy, when you can't control things

Life is so simple, when you pull the strings

Doesn't she realize, this is a hard fight

How can I help her see, that this is alright

She is pretty amazing

It's not that difficult of phrasing

But I know it is worth, it's worth praising

And I hope her spirits will be raising

I want to remind her

That she is my rock

I know that the cure will eventually lock

She will move mountains and climb up them too

The world is waiting for her and I always knew

This is a song about Tamra

Which only rhymes with camera

So I hope this song will get you by

Until gravity you will defy.

Quick updates: I need to stop pushing myself. Even putting the elliptical on a slightly higher elevation and resistance caused my pelvis to shift significantly. And it was no fun getting it snapped back into place. Apparently the step master and climbing is the last thing I should be working on because it's so hard on the hip flexors. Great. I will just settle for writing about mountains for now. Back to thesis. (rough draft due tomorrow!)

VAGINA!!!

This post is inspired by an article sent to me by my history professor. Please go read it in its full absurdity here.

I really only have one thing to say after reading this.

Dear TV Networks,

VAGINA! VAGINA! VAGINA!

Love,

Tamra

I have to hand it to the creators of this commercial. You have to be awfully imaginative to make a tampon commercial without saying... vagina. Do television networks really think they're fooling anyone by not mentioning the word? I mean, where do they think the tampon goes? Despite what She's the Man portrayed, it's not in the nose... I don't understand when this became such a dirty word. As humorous as this article is, it's simultaneously incredibly depressing.

Anyway, my personal challenge to each of you is to bring up vagina at least once in public conversation today. Please comment and let me know how it goes.

I just have a quick update about treatments. I had an extremely rough week sitting. This past Monday I had to leave my three hour seminar class because it got so painful. I went to the bathroom and composed myself and then came back and just stood for the remainder of the class. It was frustrating and I was also so nervous that it was partially in my head.

But then I had my appointments yesterday and Dr. Kellogg examined me and I had huge amounts of tension in my piriformis and my adductor. Not only did she inject four needles into my vulva, but she injected those two muscles as well. I have attached images below in case

you don't know where the muscles are. The good news is the injections don't hurt that much into the muscles- they are very tolerable and over in a matter of seconds.

I'm happy to report that sitting today is much more tolerable- so I believe the injections are working. Other than that, I'm continuing to go to PT- my pelvis is still out of place every time I go, so we continue to adjust it back. I also have my MRI this Monday in NYC for my right hip. I'm hoping I don't have a tear, but at least I will know soon enough. That's all for now. VAGINA!

This is a song about Tamra

Do not yell at me for not writing my thesis right now- I needed a break from all the insanity and have a lot of information. But first, I've been wanting to share with you a song my wonderful sister wrote for me. Hopefully she's not going to be too concerned I just posted it for the world to see. I am repeatedly blessed by a strong support system, and some days this video is what gets me by. While it was written for me, I hope it at least makes you smile and reminds you about the support systems in your own lives. And who knows, maybe Kayla will start taking requests.

Yesterday was a jam-packed day of doctor appointments. But it was a good day, despite waking up at 6:40 am for PT and not getting back home to my bed til 12:00 am. PT went well- my pelvis was adjusted and put back into place after a really good work out. I was also taught how to start doing internal work myself, which I will start doing every night. All I'm going to be doing is going in with my thumb while lying down and pressing along the inside to check for tightness and pressure points. I'm supposed to keep a constant pressure, but not too hard. This is a good way to check myself after certain activities and see how my muscles are doing.

I was done by 9:30, so I had plenty of time to sit down and write before my injections. I was not looking forward to them (I'm not sure I'm ever going to be looking forward to them?) especially after the last visit. But I have to say, I walk into that office and Dr. Kellogg really makes my day. I love and respect her- and that is saying a lot about someone who sticks me with 4 needles each week. I told her I had a rough week pain and sitting wise, so she examined me. And surprise, surprise, I have two large hematomas on either side of the lower vulva from where she injected last visit. This brings me to important point #1- Please get yourself a hand mirror and check your vagina. Check it every day, just like you do to your face or your stomach or your butt. Check it and make sure things are okay. I felt like an idiot for not even thinking to look. I guess I previously took the mentality that my vagina gets looked at enough during the week and I'd rather give it its space and privacy as much as possible. Not anymore. As soon as I got home, I took out my mirror to try and find the bruising. I felt a little explorer-like. At first, I found nothing and was a little embarrassed at my navigation skills. But finally, I figured out what I was doing, the seas parted, and there they were. Two giant black and blue marks the size of quarters with some blood trapped underneath. I'm still hitting myself for not checking sooner.

After the quick exam, Dr. Kellogg went to go prep the needles. Before she left, she put on some calming music and told me to relax and meditate and she would be right back. So, I sat there looking up at the ceiling at this pretty picture of the ocean, with some nice piano music playing and tried to control my breathing. This brings me to important point #2- I do not want to meditate right before needles are going into my vagina. Sorry, it's not going to happen. I do not want to stare at this pretty picture of the ocean waves and start to smell sea salt and feel the ocean mist envelop me. And sure, maybe that works for some people, but not me. Your painting on the ceiling and calming music is not going to trick me into some calm state of mind. I need adrenaline, competition, a more me vs. the needles attitude. I'm going to bring a cd next time with Eye of the Tiger on it and expect a nurse to come in and head-butt me right before the injections start.

This time they weren't that bad- we're using a much thinner needle and did them at exactly 6:00 on the vulva, where my pain was most severe. The bleeding was minimal, although this just made me remember important point #3- bring a pad or a liner to injection appointments. RIP lucky orange underwear.

As far as future plans go, we are going to continue with injections. If I do not notice results in a few more weeks, then it's time to go a new route. I was given literature on Capsaicin- a cream derived from red chili peppers, that has been used to treat vulvar vestibulitis. Dr. Kellogg is one of the authors of the study, and after first read-through I am very impressed. They are world-renown for using this cream, but are also heavily criticized because it does create a burning sensation on a woman's vagina. But I completely agree with Dr. Kellogg's rebuttal to these people- I already have burning! And pain! So, it really would not be any different from normal life. But, I don't want to talk about this too much more yet because if I do start the 12 week program, it wouldn't happen for another few weeks. But if you're interested, please read the article "Capsaicin for the treatment of vulvar vestibulitis" American Journal of Obstetrics and Gynecology (2005) 192. 1549-1553. If you have problems finding it, let me know and I will try and get you a copy.

That's all for today. I also added a new song to the playlist- enjoy. And now I must return to my thesis.

Whelmed

This is probably going to be the last post for a week or two because life is more than hectic right now. My senior thesis, which I have been working all year on, is due in the next two and a half weeks, so it's crunch time. I need to be writing around 4 pages a day on top of everything else.

I've caught up on past emails, but please note that my responses will be very slow over the next few weeks because my focus is on graduating. And if you know anything about me, it's graduating well, and not letting all the hard work I've put in over the past four years go to waste in less than two months.

There's a lot on my mind. Treatments are still going well and I'm noticing great improvement. I had a little setback the past few days when I got my period, but as we know this hormonal shift always seems to spark a flare-up. I'm still going once a week for injections with Dr. Kellogg, as well as twice a week for PT, however, I've cut back to once a week just until this thesis is done.

Today I walked in to get injections- four this time. That was a surprise, I was trying to get myself in the mindset to handle two. They hurt a lot more than I remember from last time and actually this time there was a lot of blood, so I stayed for a bit until things calmed down. Walking back was uncomfortable, but sitting for the rest of the day so far has been just fine. I'm still in a good mood because I do have a lot of things to be thankful for right now and I do feel I'm on a good road to recovery. But, I'm still not going to hide my frustrations. It's difficult giving up so much of your week to appointments. I asked some friends today to just tell me it is all going to be worth it in the end. I am constantly reminding myself that it is worth it and if I put the work in now it will be over soon. But that doesn't mean I still don't get frustrated. Walking back I felt a strange mixture of anger at "it" and self-pity. I know neither is good, so I've been shaking the feelings off.

I think as I'm coming closer and closer to graduation, I'm just more and more ready for this to be over and to actually start my life. I don't want to define myself as sick anymore, I want to erase this from my identity. I'll never forget about what I've been through, but I don't want to be consciously aware of it ever second of every day. But, if I've progressed this much in just a few weeks, I do have a lot of hope that my time is coming. In short, I'm anxious, I'm frustrated, I'm hopeful, and I should be writing about Victorian female mountain climbers right now.

Bahamas

Just a quick note to let everyone know I'm away traveling again and have very limited internet. I've received numerous emails in the past week, and just wanted everyone to know that as soon as I get back I will be answering them and doing a proper update. Until then, sun and homework.

A much better day

I have to be honest- I'm a little more than exhausted keeping this blog up to date while juggling school, work, and some semblance of a social life. But I really wanted to get the news out about today because it was such a great day.

First of all, Philadelphia is like a home to me. This probably has a lot to do with the wonderful people I know inside it, but the overall feel just always relaxes me. Traveling to New York was not only a chore but overcrowded and suffocating. I feel like a real person in Philly. I also feel like I regained a lot of my self back from wonderful friends (who I think are well aware who they are) and the environment and just excellent doctors who care.

Yesterday I drove right outside Philly to my new PT, Raven, at Body ReBuilders. I am very excited and thrilled with the office staff, the gym, and Raven herself. What we're doing makes perfect sense to me. First, I workout (which just consisted of half an hour elliptical yesterday) and then Raven evaluates the alignment of my pelvis. After working out, it tilts forward, so she popped it into place (yes physically popped it, noise and all.) She also checked internally vaginally and rectally to see the status of my pelvic floor and muscles. And for the first time in a long time, my rectal muscles felt so relaxed. Literally no pain. Which makes sense because I've noticed sitting has become easier this past week. So it seems the valium is doing its job. Vaginally, my left side still needs a lot of work. And she did feel a "wisp" of muscle tension on my right. In two weeks I have an appointment to start the process of getting my right hip imaged to see if I have a tear there as well. Let's all cross my fingers I don't. It just won't be for awhile because I have to dance through hoops for the insurance companies to be seen and get prescriptions before I can even get myself to New York and get the MRI done.

But back to PT. We didn't start internal work quite yet. I'm seeing Raven twice a week and she wants to get my pelvis stabilized before beginning aggressive internal work. And when we do start, she is also going to be teaching me how so I can speed up the process and also check myself after physical activity to see how my muscles are reacting. Again, this all just makes perfect sense to me. So, after this I did my exercises, which are just working on strengthening my left hip and core. If anyone wants the specific exercises, just drop an email or comment and I will send them. Since I wasn't allowed to do anything else with cardio or my legs, I finished with arm and back workouts. I figure I can at least push myself here and devote my competitive, driven energy into my upper body.

Fast forward to this morning when I saw Dr. Kellogg, who I will not stop raving about. She and her office treats me like a real human being. I was there for over an hour with her and didn't feel like I was taking up her time or being rushed. She definitely knows what she is doing and is personable and I just connect very well with her. Today's visit began with the standard urine test. (ie: I go to the bathroom, pee in the cup, try and empty my bladder, come back, take off my pants, get a quick ultrasound of my lower pelvis to see how much/if any urine is still in my bladder, there was so pants went back on, back to the bathroom, and pee again in this bowl to see how much was left.) From here on out, this will be the P test.

After the P test, I had another test where I inserted a dilator (which resembles a small obnoxious blue penis, from here on out SOMP) and then do two kegel holds to test my strength. The SOMP is connected to a computer which gives my results. Great news is my muscles have already gotten stronger (I believe she said by 17 points, however I am sorry that I have not a clue what scale that is on. But apparently it was tremendous tremendous improvement. So yay, valium suppositories are clearly working. They have been messing with me emotionally this past week, but I actually started feeling better yesterday morning (I even wanted to shower and shave and put on pants and take off my flannel.) However, I still feel a little mentally not there, which is why Dr. Kellogg is halving my dose from 10mg to 5 mg (so I'm just cutting them up myself) and then I'm only taking them Monday, Wednesday, and Friday instead of every night. This way they'll still be helping me and hopefully the side effects will dissipate. I'm also continuing to take the Singulair once a day (anti-asthma medicine) The reason for this is because it is an anti-histamine and there have been case studies of women with VVS (vulvar vestibulitis) and PFD (pelvic floor dysfunction) with 60% increase in histamine levels. So that is the current plan of attack for my muscles.

Now, on to glands. This is the more localized pain around the vulva (5:00-8:00) and the skin surrounding it that hurts upon touch or penetration. The skin is still thin and red and I have been applying the Cromolyn cream twice a day to the area. Now we are getting more aggressive and starting injections (yay!) into the area once a week. Due to the amount of steroids I was on last semester for my tonsils and other illnesses, we opted against steroid injections and instead doing Traumeel, which is a homeopathic anti-inflammatory with no side effects. I had my first two this visit and they weren't bad at all. It lasts for maybe two seconds on each side and there is no blood and no pain afterwards. It actually makes me feel kind of bad-ass because I feel after you've had needles continuously injected into your vagina and valium continuously up your butt, there's really nothing you can't do.

FINALLY, one last medicine- since I seem to have reoccurring yeast infections I am taking Diflucan once a week for awhile as a suppression method. So there you go- the pharmacy that is my life. It might seem overwhelming, but the best part is it's working, it's working, it's working. I've got my hope back. Also, an article recently came out about me and this blog in my college's alumni magazine- thought I'd share it with you here.

I've received tremendous support this past week, and have overwhelming gratitude for everyone who has been helping or even just sending a quick note or text. Believe me, it has not gone unnoticed and was probably one of the few things that got me through this week. I don't know what I'd do without my friends and family. I feel guilty all the time for constantly needing help, support, and a shoulder to lean on, and the last thing I feel is strong. I am more self-conscious and afraid then I tend to express, but it is all of you who continue to motivate me to face my fears. This was another long post, but I just cannot stop saying thank you.

I am falling

not plummeting down

a long,

black

hole,

but through the sands of time,

slowly sinking feet to head,

being swallowed,

until I am gasping for breath.

I am falling

not tumbling over bumps

to

my

knees

but through my inner darkened identity,

slowly stumbling mind to soul,

being erased,

until my Self is lost.

I am falling

not so others can pick me up

but because I cannot stop myself.

I am sinking

physically, emotionally,

losing myself in

this quicksand of struggle.

Where is my strength?

What is strength?

Is it continuing to fight,

to pull myself up

this fraying rope I refuse to release?

Or is true strength

to let my hands waver,

to close my eyes and fall

and wait for a hand.

Is real strength

to stop pretending,

to stop fighting,

to stop searching?

Is real strength

displaying your raw weakness?

I have been falling for years,

grabbing ropes and hands.

When does it stop?