"Birds make great sky-circles
of their freedom.
How do they learn it?
They fall, and falling,
they are given wings."

-Rumi (translated by Coleman Barks)

Monday, May 17, 2010

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 19th, 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.