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!