Emails- Discussion Encouraged!

I have been getting a lot of emails lately, addressing a wide-range of topics. There are some that I'm very eager to talk about and to hear what other thoughts people might have.

First of all, I have had a lot of encouraging emails lately from women offering hope. And I wish I could send those right along to those women who write from a very dark and frightened place. It's difficult to keep in mind that there are many women out there who have gotten completely better with certain treatments. We just don't hear from them as much because now that they're cured, they don't have to search for answers like some of us continue to do.

I've had a lot of women bring up Dr. Goldstein from The Center for Vulvovaginal Disorders in DC. I have heard information about him, but never looked into contacting him about my own case. But it seems that may be a step I want to take now, especially because I am currently without a specialist directing my path. Here is his website in case you would like more information: http://www.cvvd.org/

I already called his office today, but no answer, and still have not heard back from the message I left. I will try again tomorrow. I am curious to see the next appointment he has available for new patients and if he takes my insurance. I think at this point I really need to go back to a doctor and take a more concrete plan of action. Because while I do feel my hip has been involved in this, I also think my problems are multi-fold and need to be addressed on many fronts.

So I will keep you informed as I learn more about that- has anyone else seen Dr. Goldstein? Comments?

Finally, I've also received several emails discussing intimate relationships with loved ones and the pressure and pain that accompany physical contact. While many too often sexualize vulvar vestibulitis and other vulvovaginal disorders, that doesn't mean that there are difficulties with physical intimacy and sexual relations. These still need to be discussed, and I can see through the emails that many wish they could speak out more about this issue. How do you build a relationship when you feel there's a part of yourself that you can't give? I know a lot of us feel guilty, inadequate, not good enough. This is not healthy for any relationship.

I know a few women have even brought up the topic of fluid sexuality- in this case, beginning to be more drawn to women. With a relationship or intimate friendship with a woman, the playing field if a little different- there's much less guilt and feelings of being "broken," or "sick." When intercourse is removed, it's a lot easier to feel relief. And this might be a confusing topic for those who haven't learned about queer theory or sexuality courses. And I want to get more into it later, but wanted to broach the subject tonight because I know it hasn't been talked about and want others to know that if they have ever thought about it- they're not alone.

I also would love to hear anyone's thoughts or advice about anything in this post. Comment annonymously if you do not feel comfortable, but let's hear what you all have to say.

(On a side note, I'm doing much better as far as my tonsils are conscerned. I am almost back to normal after a long two weeks. It's nice to taste solid food again. Starting up physical therapy next week, as well as the gym and dilators at night.)

Not Very Talkative

This will have to be a quick update from my couch. This past Thursday I got my tonsils out, so I've been spending most of my time sleeping or lying down.

I was on antibiotics so much pre-surgery, that I did in fact get a yeast infection on Tuesday. I tried to eat as much yogurt and pro-biodics as possible, but it looks like I still can't catch a break. The good news is I diagnosed myself, and just went into the health center on campus to get it confirmed. Luckily I could still get the surgery on Thursday.

So everything is on a hold right now. Obviously no dilator exercises with a yeast infection. No working out after surgery. I'm just catching up on some couch time for two weeks. I've gotten a few emails in the past couple of days, I wanted to let everyone know that I am getting back to you. Just give me a few days to get back into action.

What a week

This week has been... indescribable. A lot of things have been happening. But let's get back to health. I went to physical therapy at the beginning of this week and won't be going for another three weeks. This Thursday I will be getting my tonsils out, so I need to spend some time focusing on that operation.

I am pretty proud of my dilator routine. I usually make excuses, but this whole week I've been doing the exercises at least twice a day. At this point I have made it up to medium plus, which is the largest I have. It still hurts quite a bit upon insertion, but then the stretching exercises don't bother me. It also gets a lot easier each time I insert in one round of exercises. I'm not quite sure why this is, but maybe I am training the nerves to become desensitized.

This hasn't been a great week for sitting. I'm hoping this doesn't correlate to me being able to work out again. All I've been doing is 20 minutes on the elliptical and arm exercises.

I feel like things have been very structured in my last posts, more like lists. So I leave you with a poem I just wrote. I'm learning to appreciate things in life more and doing things that make me happy. Hooray!

arise from your slumber,
you cannot walk your path if you do not wake.

face the darkened silence and shadows,

the moon will show you the way.

free yourself from structures and boundaries,
you cannot climb with this extra weight.

forget what has been and defy what will be.
this single step is all that matters.

fight through doubt and definitions.
let each moment shape your Being.

find yourself and make peace.
the dawn has given you wings.

fly past the sunrise, over your mountain.

your soul has been set on fire.

arise from your slumber,
Wake, so that your adventure can begin.

A Couple Quick Things...

Just a few quick things...

Went to physical therapy this week and it was great- things seemed to be a lot better. I wish I could feel the results, but I'm staying patient. Still working with the dilators as much as I can every day. I'm also working on developing my emotional relationships much more than my physical ones. It has made me feel more fulfilled and doesn't put as much pressure on me.

Also just started to go back to the gym now that I'm off steroids. It felt great, but unfortunately I'll have to stop in a week and a half when I go into surgery.

I've made it to #7 of the Wellsphere Blogger competition. Thank you all for your support. Please keep voting if you haven't already- it's so important that we raise awareness together.

Finally I also am very proud of a recent photo exhibit I did for campus for Domestic Violence Awareness Month. You can see the article here: http://www.tcnjmagazine.com/?p=2026&archive=October%202009 as well as view all the photos at the bottom.

Sunrise

"O daylight break, so particles may resound,
so the atmosphere and the heavens will turn,
and so souls, headless and legless, will dance.
Let me whisper into your ear where this all goes on."

This how lucky I am. I had a wonderful friend who knew I was upset and picked me up early this morning. We drove in the darkness to the Delaware River and watched the sun rise. And you know what? It will continue to rise every morning. 

Happy Anniversary

I had physical therapy again today. Apparently things seem to be getting better. But I wish I could feel the results more. Just a little something to keep me going.

It's been exactly a year since I started going to PT in New York. I understand I've been through a lot and come a long way, but I was hoping for better results after a year.

This might have a lot to do with the fact that I'm getting off steroids from my tonsillitis, but just tired and feel very alone tonight. I wish I had answers.

Really?

Things have been difficult recently. Like I said, a few weeks ago I got a bad case of tonsillitis. Well it seems that infection never cleared up because I got it again this past week, along with a very bad sinus infection. This is a big problem since my tonsillectomy is supposed to be November 19th. Because I've been confined to my bed most of the time, I've had to cancel going to New York and doing physical therapy. I have tried to do my dilator exercises at home and have gone up to the medium. While I'm doing my exercises, I also have to stretch out my hips.

I am also supposed to be doing the elliptical for 15 minutes a couple of times a week- I've only been able to go once because I've been sick so much. I can really feel how weak my hip is and need to start exercising, not only for my sanity, but so my health can really start improving.

Just another reminder that the Wellsphere competition is still going on. At one point I was #8, but I've dropped down to #12. Please take the time to vote by clicking on the right hand of this website. Help me bring awareness.

Whelmed

I had one of those days where I was just overwhelmed with information and thoughts and could not wait to get back and home and get them on paper. Well in this case, virtual paper...

I think big steps have been taken when women started blogging about vulvar vestibulitis because it is such a taboo subject. There are countless women afraid to speak out or even discuss it with their friends and family. It is much more difficult to have a support system and vent about your frustrations. Although this is a big step towards awareness and social acceptability, there's still many topics that are not discussed.

One of these is sex and sexuality- something I have really glossed over until now. If society thinks talking about your vagina is taboo, talking about sex is certainly worse. But at this point, I cannot be silent about it anymore.

I think one of my biggest issues is that having vulvar vestibulitis is so commonly linked as a sexual disorder, when that isn't the case at all. It's sexualized because it deals with the vagina. However, that doesn't mean it has no affect on my sexual life. After a discussion in class about sexuality today, I started thinking more about things I have tried to just push aside and forget. That's not healthy- these are issues I have to deal with.

I have not had sex (in the terms of sexual intercourse) for almost two and a half years now with my ex-boyfriend. I have only been with that one person, and the last time we had sex was when I realized there was something wrong with my body and my journey began. Since that point, a lot has changed. I have not been able to keep a stable relationship since, and the main issue is because of having VVS. There are a good number guys who listen to me explain my story and then run away. There are guys who simply don't want to deal with it. And then there are guys who do seem to understand, but it still doesn't work because I feel an enormous amount of pressure to not only get better, but almost make up for the lack of intercourse with other things. Sometimes this pressure is self-imposed, but my general experience has been that there are very few men out there who can handle this situation, which is very frustrating for me.

I have loved being single these past years, but only to a point. Everything goes well until they either find out or I tell them about my health issues. Once that information is out, it becomes the elephant in the room. But I'm deviating slightly from my main agenda.

I think one of the hardest things I face other than the physical pain and constant doctor appointments is the fact that I no longer feel like a sexual being. I understand that sex isn't just about intercourse, but it is just very difficult to take it out altogether. And I'm not trying to paint the male population as immature, sex-driven assholes- it's more of a critique of society and its standards.

We had another discussion in class about what identity you feel encompasses you the most- whether it be race, class, sexuality, or gender. A lot of people talked about being a woman or being a student... I sat there silent because at this point I identify most with having vvs and constantly being sick. My health is currently defining me, and that's something I can't really escape. I can try to push it to the back of my mind and focus on other things, but it doesn't change the fact that when I wake up in the morning and when I go to bed at night and when I am just thinking to myself, it constantly overwhelms my mind. Like I said in my previous post, I have such a huge support system that I am eternally thankful for. Right now I just wish I could reclaim my sexuality and have that back in my life. I don't need a relationship or someone to take care of me. I guess I just want to be wanted and have it be completely okay that there's only so much I can do when it comes to physical activity. And also have it be okay that just because I can't have intercourse doesn't mean I'm going to do everything else to make up for it. I hate that pressure.

Hopefully some of you can relate to this and hopefully offer some more thoughts or advice or stories. From all of your emails, I know it's a huge issue we face daily and too be quite honest, I'm tired of not talking about it.

Competition and awareness

Before I talk about some exciting news- I want to do some quick updates. Things seem to be going smoothly. I'm still going to physical therapy once a week in New York and it gets easier every time I go. I really do think within this next year I am finally going to be rid of this. I have started using dilators every night and while using them I do hip stretches and exercises. Hopefully this will help increase blood flow and make my skin healthier.

As you can see there are some new changes to this website. First of all, I made a motivational playlist for your listening pleasure while you are reading. These songs have gotten me through many tough times and I hope they help you in some way.

Also, to the right you can see that I just entered into Wellsphere's HealthBlogger competition. I've decided to enter in hopes of providing more awareness about vulvar vestibulitis and vulvodynia. I've read too many personal emails from women who are too scared or embarrassed to talk about their problems and don't know where else to turn. I've been to too many doctors who either do not even know what my condition is or give incorrect medical advice. Change must happen. So I'm hoping to do well in this competition in order to educate even more people about what we have to go through every day. Please click the vote button on the right side, and submit your votes on Wellsphere. We can do this!

Finally (sorry to overwhelm you), I sent out the following message to a few of my friends. This letter also has a lot to do with all of my readers, who have been there for me numerous times. I'm reposting it to thank you all, and to also encourage you to send a similar message to your own support systems. Too often people don't realize the difference they make in your life until it's too late.

Dear friends old and new,

I'm currently writing this in my notebook as I ride the train into New York. I watched something this morning that has overwhelmed me with gratitude and inspired me to reach out to each of you. I am facing my share of struggles, but they have not and will not break me. This is only because I have the strongest support system one could hope for. Each of you has made an impact on my life. Each of you has lessened my pain in some way, whether big or small.

A mass message may seem silly, but I felt compelled to offer my thanks. We might not be that close and we might not still be in touch, but I have memories with each of you that make up the person I am today. Many of you do not realize the difference you have made in my life. Things as small as listening to my fears and complaints, driving me to doctor appointments, making me smile and making me laugh, encouraging me, dancing with me, holding me, helping me catch up with my work, and many many others. The little things matter. And they have been my best medicine over the past two years.

As I sit here today, I am more at peace than I have ever been. And it's because I know what ever mountain lies in my path ahead, I don't have to climb it alone. I wish I could give back to each of you the strength you have given me. I am so grateful. Thank you.

Have a great day and don't forget to vote!

Bump in the road

Again, I am sorry about the lack of updates. Things have been pretty crazy recently. While I was dealing with the increased pain in my hip, I also got sick. It is a very long story that's not relevant to this site, but the short version is I went on antibiotics for tonsillitis, and then 5 days later had to go to the emergency room because they swelled up more, hurt a lot, and I was having difficulty breathing. Turns out they were starting to close my air passageway. I spent a week at home on steroids and a stronger antibiotic. Finally I am off medication and can put it behind me. The good news is I was forced to take a week off from life and spent the time with my family, sleeping on our couch downstairs. It also taught me the importance of not running myself down. I have a lot on my plate at school and it piles up. It literally took two doctors and an ER visit to force me to stop and relax.

The funny part of this story is that the steroids I was on for the tonsillitis have helped my hip calm down even more. I also felt that the week off from all my obligations has made me a lot healthier. Now the problem is I'm trying to catch up on everything that I missed. And, I will be getting my tonsils out in November, which is a surgery that I need to be home for two whole weeks. Luckily my professors are very understanding, I just need to make it through this year so I can graduate.

As far as my progress is going- I went to physical therapy last week and the difference in results was incredible. I'm having a much easier time sitting, and this time when I got my period, I didn't have any of the usual painful symptoms that escalate everything. There has been definite improvement. Now I am allowed to go back on the elliptical about three times a week, slowly, for about 15 minutes. I am also supposed to start up the dilators again, starting from the smallest size, and doing my hip stretches while using them. This I will start in a few days once I feel completely recovered.

Other than that, life in general has been pretty great. I feel like I'm on an upward swing. I'm also trying to appreciate every moment. If you want an inspirational song- check out Terra Naomi's, "Say it's Possible." It's good stuff. More exciting is I have emailed her and she is now coming to school to perform a benefit concert on November 2nd!