Where to begin? I'm so excited to finally write a happy post. My life has turned around completely and I'm finally beginning to leave this state of anger and denial. This past weekend, the 28th- 30th, I decided to go to a blues dancing exchange in Pittsburgh on a whim. I wasn't able to go with my tennis team to upper New York because of the flu/back problems from the car accident. So my good friend Kerry and I, along with Lucky (a young blues teacher from NYC) drove the 6 and a half hours to Pittsburgh and had the time of our lives.
I focused that weekend on making myself happy. I probably danced for 28 hours and slept for 6. And I also met someone. Details aside, it was a big step for me, and it was nice to know that even with VVS I've still got it and am not broken. It was just a big self confidence boost that was greatly needed. I was even able to tell him about my condition and it didn't scare him away. So, to all the men in the world, I haven't totally written you off just yet.
After that weekend, I have just been on this high- I won my doubles tennis match on Saturday, I'm getting involved with a blues dancing documentary... I have been having fun. I think it's so helpful to take the time and make yourself happy. I also think the medicine has finally left my system and my body has regulated itself. People have been noticing the difference in my attitude. Finally! Tamra is back!
Tonight I made a presentation to WILL (Women in Leadership Learning) with the help of Debbie about being diagnosed with VVS. We always do a presentation at the end of class about women and health- this time Debbie played the role of several doctors and we acted out a shortened skit of my basic story. At the end I told these women the story was actually about me and gave them my blog to read, so hopefully that many more women will now know about VVS. It was a big step to "perform" this presentation and I feel so free after doing it. I have another presentation coming up in two weeks to my class, and then some high school presentations after that. It gets easier each time.
I'll end on a health update on how I'm doing. So far I'm not responding to this medication and I still hate taking it. I go back to the specialist on the 15th and this time my dad is taking me because my mom has work. I'm so happy he took off work and is going to be there for me. He's been so understanding and motivational- I couldn't ask for a better support system. I only hope I find someone who's half the man he is someday. I also recently received a message from someone who has VVS which I'd like to share. She said she saw Dr. Goldstein- one of the top specialists in the US for VVS and he told her she has primary VVS, which means it is a birth defect that she was born with. He said she was born with 10-20 more nerve endings than normal which causes the pain. Dr. Goldstein said the only way to get rid of primary VVS is surgery. I'm going to look into this further and ask my specialist in a week if this is the case.
I also have a friend who is going through the surgery as we speak. If you want to know more, it's called a vestibulectomy. It is usually the last resort and is a very difficult and draining surgery. I think about her constantly and hope she recovers quickly. It would be another glimmer of hope for me if she is cured.
Well that was a lot for one day. Thank you everyone for reading. This blog has already been viewed 1,300 times- which means that many more people have now been educated. Yes, I'm still living with a lot of pain. But I don't dwell on it anymore because I've been so happy recently. Dancing has really become my medication and makes me forget. I have surrounded myself with wonderful friends and family. I really couldn't be more blessed. Thank you.
7 comments:
yay happy posts!:)
proud of u for the dancing...and the boy, don't they just help everything? haha. we r gonna dance so much when ur in chicago and ur gonna teach me omg im excited!
also so proud for the presentation, great job:)
I think it's so helpful to take the time and make yourself happy. (best line in the whole post)
love ya, stay strong
tamra, happy to hear you are feeling optomistic!!
please do not jump into surgery -its a pretty serious step. have your pelvic floor muscles checked by a proper gyn. you may have pelvic floor dysfunction as a cause of your pain. this is aggravated with intense sports and sitting. it can be cured with pysiotherapy. just something to look into!!
best wishes!
Hooray Tamra! Good for you, I'm glad you are feeling better emotionally. I miss you. Come back home soon. :)
I see someone suggested having your pelvic floor muscles checked. Unfortunately, it is not that simple. Very few doctors know how to do this. Please, Tamra, please join the group happypelvis. You sound just like Dana, she started the group after getting well from vestibulitis and vulvodynia. You CAN beat this. I also got well, really, sex, riding horses, and drinking margaritas well. If you want I can hook you up with her by phone or you can talk to me if you want. She's a student in San Francisco. She's a psych major and going to specialize in chronic pain. Do NOT have surgery until you are seen by a pelvic floor physical therapist who is well known and excellent. There are only about ten. I found you because I put vestibulitis into a google alert (so I can keep abreast of new articles). You can beat this, I know you can.
love, Molly
feel free to email me at mering00@yahoo.com
This is a post that was posted today (one of so many) from a girl who has been in serious agony and has been looking hard for a qualified PT.
>
> And I like her a lot! She knows her stuff and is so good. She is
> convinced my problem is typical pelvic floor dysfunction! I have many
> many trigger points!! She said when she asked me to do a kegal my
> anas tightened up and is too toned, and that my vagina hardly moved a
> muscle. But it still has lots of trigger points inside.
>
> She says I am easily curable. She said that the nerve like pain and
> vulvodynia I have is secondary to the pelvic floor dysfunction and if
> the pelvic floor dysfunction is cured that will most likely get better.
>
> I have a mild case of sacroiliac joint dysfunction( the butt pain I've
> been complaining about. She said a mild case usually gets better on
> it's own but that if mine doesn't she will keep watching it and treat
> it as well.
>
> The PT's name is Nicole Southerland in Plano, Texas. Her name is
> mentioned as a PT to use on the ICnetwork. She said she is going to
> maybe join here to see what all info we have, etc.... She really is
> nice and spent so much time explaining everything to me as she was
> feeling around.
>
> Next week I go back for an hour and a half of intense therapy to break
> up some of the trigger points and teach me how to relax the anal area
> and get more of a balance in the muscles down there.
>
> AND she did not recommend KEGALS! And she thinks it is crazy to do
> kegals as it would cause me more pelvic floor dysfunction than I
> already have!
>
> Anyhow, I liked her lots. I think she is the one!
>
__._,_.___
The group is:
http://health.groups.yahoo.com/group/happypelvis/
It may take a day or two to be approved, Dana tries to keep out the spammers. I should send you one of her posts, she is rocking and rolling.
Hey, showing support for my fav dancer woman!
Praying for you sister!
I agree, don't rush into surgery! I actually heard just the opposite than what your friend did and that surgery for primary VVS will actually make it WORSE! If you goggle, you'll find a lot of studies that agree. I'm fighting the same thing, we'll figure it out eventually!
Dr. Goldstein is my doctor and he is great and so knowledable. If you do decide on surgery he is the doctor to do it with. I have secondary (allergic reaction to monistat) which wasn't a birth defect and he prescribed licodaine and it got a lot better. I still have some pain however I don't need the surgery. If you do meet with Dr. Goldstein he will give you phone numbers of those that did the surgery so you can speak to them yourself about their experience. I am so glad I am almost over this. Dr. Goldstein is such a great doctor especially with this. He is one of the top doctors in this field b/c many doctors out there do not know anything about VVS, you might need surgery if you do have primary however I suggest using Dr. Goldstein and before you decide call patients that already did the surgery and speak to them so they can give you their feedback. But do not use another doctor for that surgery. Good luck.
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