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.
19 comments:
Vulvodynia sucks. I can't write a good word about it.
I'm using gabapentin cream 3x a day down there and it has improved my vulvodynia alot. On a scale of 1-10, I had a pain level of 7/8 on most days before I got diagnosed.
Once I did get diagnosed the cream has knocked the pain down to 3/4. I'm still in pain but I can sit for longer and it's helped alot.
http://www.endfatigue.com/health_articles_o-q/Pain-topical_gabapentin_effective_for_vulvodynia.html
I'm "healing up" but if I quit using this cream, I don't know where I'll stand.
It's blown my social life apart. I'm 26 and don't want to drag my IC cushion all over with me, and I can't sit for more than an hour or two so goodbye parties.
It's good to rant and it's healthy. It might not help but you're not alone in this.
You already know everything I'm about to say but I want you to hear it again:
1. My feelings towards you are not out of obligation but purely out of every smile, every laugh, and minute you have helped me to become a stronger person. Your family and friends love you. We will never stop doing so, even when you stop believing in yourself.
2. I am so proud of you for trying to put your health first. I know you can't see this now but every minute you spend at 50% or trying to reach 50% might help you towards your goals later.
3. I love to cry. Emotions are meant to flow, not to be bottled up and the more you are truthful with yourself I think the more you'll be able to those tears flow. These tears are for your future. I know your weren't a crier but you might find some relief in your tears.
4. "Let the Rain" is a beautiful song. I also think that anything you write will be amazing, go for it with your memoir.
5. Life may never be what it was but it will get better. Please try to believe this. You are constantly able to reinvent yourself and adapt to new adventures. I know you will rise and climb to each new peak, and overcome each new valley.
6. Being truthful with yourself is one of the hardest things anyone must do. Kudos to your valiance. Just remember, fear isn't a bad thing. Not doing something to fight your fears is what keeps you engulfed in darkness.
7. You have changed my life for the better, by being my friend. I would, and could not be the person I am today if it wasn't for your friendship, humor, compassion, and humility. I only hope I can help others as much as you've helped me.
I am not downplaying all your pain and hardships. I know this stalemate is killing you, but please never stop fighting. As exhausting as it is, we are all here beside you.
Good luck with your surgery my love! Call me anytime.
What an awful club we belong to. My Vulvar Vestibulitis started when i was 20, I am now 33. I can relate to what you are going through. You are so young. Please don't be so hard on yourself. I have been there and know how easy it is to beat yourself up.
Over the years I have tried everything under the sun. Physical Therapy, bio-feedback, high dose anti-fungal treatments (even though there was no sign of yeast), interferon injections, injections of morphieme into my sacrum, oral valium, nuerontin, elavil, low oxolate diet, injections of lidocaine, topical lidocaine, topical estrace cream, steroid injections, vaginal valium and more I am sure I am forgetting. I recently had a vestibulectomy 8 months ago. It has helped, but unfortunately I now have pudendal neuralgia. Whether the neuralgia was there all along or it was caused by the surgery is hard to say. In the past few months I had two nerve blocks done by my gyn. They were done under twilight anesthesia by accessing the pudendal nerve through the vagina. After these failed to help, my gyn sent me to a pain clinic and I am now working with a pain doctor. Currently I am in the least amount of pain I have been in, in over 8 months. As I have learned with this condition, I just have to enjoy today, because it could all fall apart tomorrow. My pain doctor did a nerve block under anesthesia only he used an x-ray to ensure he hit the nerve. He also did the block through my butt rather then my vagina. He explained why this was better than vaginally but I can't remember. He also has me on Cymbalta and a compounded vaginal cream. It contains, lidocaine, valium, ketamine and clonidine.
Don't give up. Its ok to cry. My prayers are with you.
Tamra, we all hear you...we all feel bad for you. Sometimes when you post your feelings online, you make everyone of your friends and/or family members feel bad for you...it is like you put your burden on them, even if that is not your intent, I know it brings me down. If you need someone to talk to...they have professionals for that, trust me I know and I can certainly empathize when times our down emotionally. You are free to post and say whatever you want on your blog or Facebook, but remember there are people in this world with more problems physical/emotional than you...chin up. I know you like quotes or poems so the following might apply
Self Pity by D.H. Lawrence
"I never saw a wild thing
sorry for itself.
A small bird will drop frozen dead from a bough
without ever having felt sorry for itself."
Dear Anonymous,
What in the world is wrong with you?! Get a life!!! Find something better to do then pick on someone who is suffering. And who are you to say that what Tamra writes makes EVERYONE of her friends and family feel bad for her. Are you inside ALL of their heads? Also, I am fairly certain Tamra is not trying to win an award for the biggest problem in this world, of course no matter where you look, there is going to be someone whose life is worse. However, having lived with this condition for 13 years the pain is unimaginable. I wouldn't wish it on my worst enemy but I truly wish you could experience it for one day. It would shut you up real quick. And by the way, its called freedom of speech and if you don't like it, or it "burdens" you, DONT READ IT!!
Shame on you.
To those concerned,
I will take your advice and not read her posts, but if I could give "VCLUB" advice, keep your posts on here civil, for Tamra's sake. I want what everyone else once for Tamra, I apologize if my post seemed to0 harsh but it was written with benevolent intentions. There is no need for insults when you wrote:
"Dear Anonymous,
What in the world is wrong with you?! Get a life!!!"
OR
"I wouldn't wish it on my worst enemy but I truly wish you could experience it for one day. It would shut you up real quick."
Tamra posted the following in this particular post:
hon·es·ty (n)
-the quality or fact of being honest; uprightness and fairness
-truthfulness, sincerity, or frankness
-freedom from deceit or fraud
That's all I was doing, was being honest and sincere with what I posted...just like Tamra in her writing. I am concerned that when she writes and posts her personal feelings on the net rather than a private journal, may bring a certain attention to her that she may not like and also keep her in a depressed mode. But like you said that is her call, and it is also her call to delete this post and the original that I posted September 26, 2010 12:11 AM
Chin Up Tamra and VCLUB pain and suffering are terrible things to feel, trust me I know that more than you think, but I choose not to disclose my 'pain' beacuse it is too personal and I feel ashamed to have it...but pain also let's you know you are alive and can still live your life with adversity. Tamra, you taught me that with your mountain quotes. I certainly envy and most importantly empathize emotionally
how down a person can get, just like one of your friends said on Facebook, "you look like you are down in the dumps." Well if you can understand my intentions with the above post I am more than willing to offer my hand to pull you out...you too VCLUB. And sorry VCLUB for the misunderstanding or if you felt that I insulted Tamra and her blog, that was not my intent, please trust me on that. This will be my last and final post, if you feel the need to insult me, you have the freedom of speech to do so, but I won't do that. Again I am sorry to you for feeling the way you did when you read my post and to Tamra. I am on Tamra's side just like you are, you may not see it, and maybe she won't after the posts, but at least she can read and maybe take a step back and get back the hope that appears that she does not have from her posts. I hear your argument VCLUB, sometimes the best way to help with the pain is to share your pain, or write it out as Tamra does in this blob, but how can I,you or anyone help someone emotionally when the negative posts of lost hope, as they are perceived are posted. That's the point I was getting at. Through this discourse was me trying to validate that point of view, Try to understand that.
Here's honesty for you. Tamra is my sister first and foremost, but she is also my best friend. If you have been following this blog from the beginning you would know just how big a step this was, for anyone really. Putting yourself out there is not easy, it is admirable. If you have been following from the beginning you'd know that this has been by no means "negative posts of lost hope". She has inspired, she has helped and most importantly she has set up a medium for women to share their stories and their knowledge. I will never understand what she goes through, what all of you go through, but I know that the best I can ever do is BE there. BE there for the good, the bad and the ugly. If someone is uncomfortable or ashamed of their pain that's their prerogative. I'm glad they can at least admit that, however DO NOT bring down my sister. DO NOT tell her she is looking for pity or putting herself in a position she doesn't realize she's putting herself in. DO NOT generalize how everyone around her feels. I am her friend. I am her family. I am here, no matter what. And guess what, she's there for me no matter what. I just started college and yet she still makes sure I'm doing okay, helping me with papers or social problems. A relationship is meant to be two sided. Both parties know how to share as well as listen. That's the truth for you. Keep writing Tamra, I love you.
Kayla,
Thank you for stating it so much more eloquently then I could. After reading the "anonymous" post. I just lost it. I could not believe someone could be so judgmental and so presumptuous. I wish I had given myself a few minutes to clam down before posting but I didn't. I don't have the courage to do what Tamra does, share every ounce of my pain and suffering with the entire world. I admire her for it. And she is helping others, me included, by doing so.
Also, thank goodness for sisters. I know I would be lost without mine. :)
Tamra,
Honesty isn't always pretty, but it's important. As a fellow vaginal pain sufferer, I appreciate your honesty and I appreciate how hard it was for you to admit all of that. You have supporters in this blog world, and not because you have one post that's negative and we all say "ahh, that's so sad". Most of your posts are inspirational and give the rest of us hope. It's okay to show weakness, it's absolutely important to be honest. This is your blog - you should say what you want. You are obvsiously going through a really hard time right now, and who wouldn't be? But I would never call you a downer. Of all the blogs I follow I find you to be the most inspirational, and I walk away from your posts feeling like "hey, I can do this. i can be strong like Tamra". Your honesty makes you more admirable. I truly wish you the strength to continue fighting for your health. But my main point is this - honesty is never wrong, especially on a blog - in fact, it's expected. Continue being yourself. We're here for you.
My dearest Tamra!
Writing this again bc my computer hates me...Grr!
Thank you so much for sharing your honest thoughts with us, in the way that works best for you. I was in a similar situation myself the last few days. It's so hard when you feel things that you don't know how to share with others. It can be extremely lonely, not to mention terrifying, not knowing how folks will react.
I think it's amazing you could put yourself out there like this. I'm so proud of you, not only for getting through everything that you have, but for continuing the struggle...and maybe you'll even become a crier JUST LIKE ME!
I love reading your blog. I think it's a good medium to get your thoughts out, and I find it helpful to keep up with you and know how you're doing...not that I don't love texts or phonecalls so much more! But you need to focus on you and your health.
I guess that's it. I think my first post was better, but what can you do? :)
LOVE,
K
Hey Tamra,
I responded to your post on my blog: I am suffering from Vulvodynia Burnout. Which means, among other things, that I have had like no interest in being a constructive member of the vulvodynia society for more than a year. So there's my truth.
I'm sorry you're in a rough stretch. Try to remember that you and your achievements are NOT one in the same. You are so much more than the things you achieve. You are your glorious personality, your beauty, your wit, your determination, your insight, your compassion, your honesty. You are a trillion attributes that lie outside of whatever discrete acts you get done in a day -- YOU are the means by which you DO everything. So if you can, leave achievement alone. Focus on the moment, on sensing and reflecting, on growing a new kind of flower out of a new kind of dung :) It'll bloom eventually, and you will be more wholly what you are when it does.
Esther
Tamra,
Wow, as someone who has experienced burning/stabbing pain off and on for 10 years, I'm really puzzled by that person who suggested you might keep your thoughts to yourself. I wish I could convey to this person how much courage and hope I get from the words you write. You are so eloquent and thoughtful in your posts, so lacking in self-pity. You speak for every woman who feels like she has a hot iron in her vagina. Or poison ivy in her vulva. It is a gift you give all of us, and I'm floored that one of your acquaintances would be so passive aggressive in his/her comments. I get the sense, actually, that this person envied the way you can convey your thoughts with such freedom and insight. But that is really irrelevant.
Your true friends surely realize how lucky they are to have you in their lives. As are we in this virtual community. Many thanks, Tamra! I'm rooting for you. xx
Your blog has given me hope that I'm not the only one. My pain is no where near the severity of yours, but now I know that I'm not alone. I've been living with pelvic pain for only a year now. It's like a switch was flipped and I started to have "pain down there." Thank you for being honest and sharing your journey with the world. Most women take for granted the pain they DON'T live with.
I pray that you will not see yourself as a burden on others. You are a strong and beautiful woman.
Tamra,
Just keep on writing, girl. It doesn't matter if you're feeling despair or hope or enlightenment or anything else.
We are here to listen and support you.
I believe that we are put on this earth to love and be loved by others.
You're a brilliant writer and have brought inspiration to many. You are also human. And so speak your truth whatever that may be!
Take comfort from your supportive friends and family. We are all here for you through thick and thin.
V is not easy to live with... and although I don't have as severe pain as you, I can totally empathize with everything you write here.
Don't let anyone tell you what you should and shouldn't write. Just speak your truth.
I've done the same on my wellsphere blog. I've had good days and days with suicide ideation.
There are many here who love you unconditionally because you are such a lovely person.
Sending you good wishes and prayers as you concentrate on your health.
Miriam
It has taken me awhile to respond because I wanted the time to take a step back and reflect. When I first woke up and read "Anonymous's" comment, I felt sick to my stomach. The entire day I walked around upset, amazed at the effect one voice could have over me. I think it hurt so much because the person seems to be an acquaintance of mine and voiced my biggest fears and insecurities in one comment. I honestly did not think I would post anytime soon.
But things have dramatically changed since that day. The overwhelming support that continues to pour in has given me back my faith in myself, my writing, and what I do.
I am sorry for the way you feel Anonymous. It sounds like you are in a lot of pain as well and unable to talk about it. But, I am not going to be silent and go back to the days where I kept this a secret. Writing is therapy and I cannot explain my relief after a post. I am able to analyze myself and realize what I need to do to take a step forward. If you've read from the beginning, you should know that every post isn't a "negative post of lost hope." This is a community, a way for people to realize they are not alone, a way to heal. While I try to be inspirational, it would be unfair not to document the rough times. A lot of people lock up the pain and suffering they feel and put on a face of strength and courage. For me, courage is admitting and ultimately embracing your struggle. And I will continue to do that, since I continue to have support.
I do appreciate your honesty. One thing to remember is that my name is on every post and I choose to take the responsibility over putting myself out there. I have no problem with anonymous comments, but it seems that if we are friends, this is something we need to have a private conversation about. And if you do care, as you commented, telling me to seek therapy in an anonymous post would not be the best approach. I urge you to discuss this with me, whether it be in an email, message, phone, or in person. I would be surprised if you do, but I do hope you choose to contact me.
Your honesty is beautiful and raw. Good luck with your upcoming surgery, and keep us posted. I may email you in the coming days, as I'm pursuing yet another consult with a hip specialist to rule out any other issues that could be mimicking or contributing to my pudendal neuralgia.
I discovered on my wedding night that I had provoked VV, though I was unfamiliar with the name at the time. I was devastated, to have waited, for my husband to have waited to only find that it was possible.
I saw 2 doctors both of which told me it was in my head.
It's a hard thing when people don't understand what your going through, its hard for them to understand.
My only hope is in Christ, Jesus. The Bible tells us "that all things are for the good of those who love Him and are called according to His purpose" (Romans 8:28). I can't see the good yet, but God promises its there. I'm praying that one day he will relieve this burden for us.
I hope I haven't offended you, but I would like to pray for you and your upcoming surgery.
Wow. This post said so many things that I have been feeling. Thank you for making me feel that I am not alone.
I have been getting to know you Tamra, through your blog and this was a poignant and brave post. Thank-you for your generosity and taking the time to share and process your journey this way. Making the choice to go home was really a healing and caring thing to do. I know better days are ahead for you.
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