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.