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