Please hold, your call is important to us.

I feel like my life has been put on hold these past few weeks. I started my job, and have since been to Boston, Milwaukee, and now finally in my new home of Denver, CO. Surprise! I moved halfway across the country. Except not entirely. The Mile High City is great, I'm just still living out of a suitcase and crashing on a couch until I find an apartment. (Great time for anyone living in Denver in need of a housemate to speak up.) Health has been put on the back burner until I am settled. I have two names for physical therapists in the area and will try calling them by the end of the week, so I can continue with hip PT. I'm also researching specialists in the area (let me know if you have any information.) The hardest thing I'm finding right now is balancing my new job with my health. I'm working long hours, but I need to find the time to do this. I'm so eager for this to be over with. I have been feeling pretty good the past couple of weeks, but I know there's a lot of work left to do. I think the most difficult part of moving for me is not having a solid connection with anyone in the area. Don't get me wrong, I've already fallen in love with the mountains. But no one here knows about me or what I'm going through, and now I have to go through the process all over again of telling people. Eventually. Hopefully. Maybe not. Please hold.

50%

We are told when we are young, from our teachers, parents, and coaches, that 50% is less than average. 50% is weak. It is cowardly. 50% is not even worth it. 50% is failure.

This is the mindset I combat every day as I am recovering from two hip surgeries. I'm an athlete, a competitor, and doing anything less than 110% is against my nature. I want to push myself and give my all, but I keep learning how impossible that is right now. It's the one lesson I never seem to learn.

It's been a rocky road the past couple of weeks, which is why I've distanced myself from blogging. Things changed so drastically day to day, that I didn't even know what to write about or how to explain what I was feeling. The biggest piece of information is not even relevant anymore, but I'll mention it anyway. Way back ago, I tested positive for an autoimmune disorder- Seronegative Spondyloarthopathies. But, the deal was people test positive for SS and don't actually have the disease. I went to a couple of doctors- I had a bad experience at a few specialists and was trying to get answers. Finally, after three long weeks of dozens of x-rays, blood work, being poked and prodded, told I was going on treatment for a year and looking up the possibly crippling side effects of the disease, my dad got tested as well. We found out my family just carries the gene, but we do not in fact have the disease. By the end of it all, I was exhausted and it was just another thing I didn't have to cross off the list.

So where am I now? I am focusing on hip rehab, mainly my right hip, but my left has still not recovered fully. I still have around a month left before I can start light running, and four more months until I should be completely healed, and possibly ten more months until I see some results. Let the waiting game begin. I still have some tears in my pelvis that I could have surgery for, but we are waiting until my hips have recovered a bit more before diving into anything else. I also still have vaginal pain I need to work on after my hips are a bit more stabilized. I was very happy with the results of the injections, so I'm sure I'll start them up back again. Finally, my sitting pain is still horrible. I'm hoping once my hip is healed I will see some relief, but if not, it's back to searching why I have all of this pain.

A few weeks ago I was in New York City to see my hip specialist and a play at night. The wonderful transportation system that is NJ Transit ended up breaking down and running behind for over two hours, so I missed my appointment. I was furious. Now with ticket prices going up, it's $30 to get into the city, not to mention $6+ parking at the train station. Not to mention the amount of time out of my day was wasted. At least I had the play that night, but I stupidly walked 60+ blocks once in the city. I thought it would be good exercise for my hip. Wrong. I was hurting badly for days after. That's the point where I finally realized what I should have a long time ago. I am not invincible. Pushing myself the way my mind and body were used to is impossible. The more steps I take my body forward, the more steps my recovery is taking backwards.

The past two times at physical therapy, I have been a changed person. I originally set the elliptical to 30 minutes, which I would usually follow with a 20 minute bike ride. I stepped off the elliptical at 15 minutes and called it a day for cardio. I felt horrible, but I knew it was the right thing. I'm beyond aggravated that I am out of shape. I don't fit into a lot of my pants anymore, I can't go dancing, no rock climbing, no runner's high after a difficult workout, no adrenalin. I feel weak and powerless. But, after the past two sessions, my body is not in as much pain.

As much as we are told that 50% is failing and as much as we cringe when we say 50%, it's not always true. 50% is not half-speed; 50% is halfway there. 50% is safe. It is smart. Any maybe, just maybe, slowing yourself down to 50% is a display of true strength.

I'm gearing up in a few days for my first day of work and my next adventure. I still don't know where I'm going to be placed for work- the possibilities are Portland, ME, Concord, NH, Boston, Providence, Hartford, Trenton, Philadelphia, Pittsburgh, Wilmington, Baltimore, D.C., Chicago, Denver, San Francisco, and Portland, OR. It's going to be a fast and abrupt move, but I am anxious and excited. This is my chance for a new, clean slate. If I am moving way, I'm going to need recommendations for doctors in these new areas. Please let me know if you have any suggestions. Also, the True Life episode was officially pushed back to allow for adequate promotion time, but you will be the first to know once I find out the new air date. Thanks again for all the emails- I'm running out right now, but will be back tonight to answer some more. Keep fighting.

Vacation

Hello all.

Found limited Internet here in Canada. On vacation for another week but once I get back I will properly update. I just received all your wonderful emails and plan on answering the moment I return.

Tamra

Update, Part I

It's only been a week, but as usual, I have a lot of information. I didn't want to try and squeeze it all into one big post- I find people are more apt to read if it's shorter and concise. I wanted to copy something Caryolynn from Cherry Hill. She is a therapist and you can find her website at www.livefullycounseling.com. She emailed me and said the following:

I'm particularly interested in helping women who have lost interest and pleasure in sex and working with their partners who navigate that journey with them. There are so many reasons a woman might avoid sex, it could stem from exhaustion, to relationship problems, to painful sex experiences, and whatever might fall in between. I enjoy helping these couples reconnect, strengthen their relationship and enjoy a fulfilling sex life!

I know you are all from across the world, so Caryolynn might not be the answer, but therapy could possibly be. I know I shouldn't be talking since I stopped going after two visits to someone near school, but I think it's important to do. I'm having difficulty opening up to anyone, so I know it's something I should work on and I urge you all to do the same. We have control over our life. Maybe not medically speaking, but everything else is ours for the taking. And don't you think life has taken too much from you already? It's time to make a positive change.

I'm exhausted, but I'll update tomorrow about all the new medical information I found out this week. Also on a personal note, I have just finished filming for a True Life episode for MTV. It's actually called True Life: I can't have sex, but it centers around me and two other women with similar medical conditions. It's set to premiere July 22nd at 10pm. I'm hoping it raises awareness for all of us, so check it out if you can.

Freedom

I want to begin by thanking my family for taking such good care of me through this recovery process- I say it repeatedly, but my strength comes from them. Thank you also to all my friends who have come visited me- some have come for almost every surgery I go through. It's important for me to realize that I'm not going through any of this alone, and most importantly that there are more levels to our friendships. Finally, a big thank you to all of you who have sent me warm inspirational emails before and after my surgery. Every time I get an email I remember that I'm not alone and what I'm doing is making a difference to some people.

Recovery is going really well. I'm in a great place and looking forward to the rest of the summer. My surgery was very successful- I did indeed have a big tear (bigger than my left hip) that was repaired, as well as a bone spur that was shaved down, and a tendon that was released. After the procedure, I woke up in the recovery room in a lot of pain, but it lessened once they were able to give me medication. Again, the Hospital for Special Surgery was wonderful and I continued to be impressed by them. It was a same day procedure, so I came home and have since been resting and improving. Things are moving along a lot faster than last summer. I was off pain medicine in two days and have been walking up stairs. It's been a little over a week, so I got my stitches out today and started walking without crutches. Now it's just a matter of strengthening my muscles once more. I'm starting physical therapy and planning on going three times a week and dedicating my summer to rehabilitating correctly.

I have an appointment in a week with my rheumatologist to go over my x-ray and bloodwork results. I'm anxious to see if they found anything. I'm also going to keep an eye on my pelvis, and might need an additional surgery to correct those tears a bit later on. I keep getting asked if the surgery has made my pain go away- no results yet. But it usually takes up to a year to finally see if it worked. Right now I'm not focusing on how my body feels- it still needs time to recover and regain its strength.

I haven't worked out in a long time. I miss the adrenaline and sweat and aches. It's frustrating sitting and waiting when all I want to do is go out and enjoy my remaining time before I begin my job. A big part of me is missing. I feel pretty vulnerable without it. And it doesn't help that I still need to be taken care of. But for now I'm going to focus on regaining my strength. I can't work out my lower body too much, so I'll compensate with my upper body. And I might not be able to do the summer activities that I want, but I will improvise. So take that, life.

Learning to walk (again)

Yesterday was hip surgery, take two. This time on my right leg. I can't say I was thrilled going into it. I was not happy about losing another summer to sitting on the couch and not being able to do anything without assistance. I was not happy about having to handle the pain all over again. But at the end of the day, it really didn't matter what I felt. It was another tear and it needed to be fixed.

I spent the day before surgery playing tennis with a great friend. I could not stop smiling- I wasn't able to exercise for so long, and now to feel the sweat pour down my face, to be able to run, and to breathe... this was the missing part of me that I had forgotten. It was calming and it reminded me that it'll always be there. I have been pretty upset recently that I turned into this out-of-shape blob. Exercise and athletics mean so much to me. They are a chance for me to challenge myself and to feel alive. Most importantly, they were such a good distraction from the pain I was feeling.

After playing tennis, I calmed down significantly and was ready to mentally prepare for the next day. I had already gone through this before, so I knew what to expect and I knew I could handle it. Plus, another surgery meant I'd be getting matching scars on either hip. Imagine the stories I can tell of how I got them.

My parents and I woke up very early yesterday and headed to the Hospital for Special Surgery in NYC. The whole day was deja vous- I remembered so much of it from last summer. It's always eerie walking into a hospital holding crutches, walking just fine, but then leaving in a wheelchair.

Once we got there, it was the same drill as before. Yet again, the HSS was so well-run and organized, as well as kind and understanding. After a bit of paperwork in the front, I am taken back to my own room where I get dressed in the lovely paper gown and shorts, with the lovely blue shower cap. I have to go to the bathroom to take a pregnancy test (standard procedure for all females) and then I'm brought back in and an IV is started. The nurse asks me questions, as well as the physician's assistant, and the OR nurse, and I sign more paperwork. I also get visited by a nurse to wash my hip, a physical therapist (I'm already an expert at crutches, thank you very much), the anesthesiologist's assistant, the anesthesiologist, and of course, my surgeon. After this big party, I walk myself into the OR, get on the table, and the anesthesiologist begins. After I was sedated and asleep, he gave me a spinal epidural (big shot in my lower spine) in order to numb me from the waist down.

Next thing I knew, I was in the recovery room, disoriented and tired. I could not feel anything from the waist down, but slowly I got my feeling back. My mouth was very dry, so I started to drink some water and eat crackers. I was allowed to have one parent at a time, so each came in to hold my hand and keep me company. They are both wonderful and have been the biggest and greatest support system in my life. After I was up for a few minutes, I started to feel intense pain in my hip. I was given two shots in my IV and two pills. The pain stayed for awhile, but it was pretty easy to manage and soon started to wear off a bit. I wanted to get out of there as soon as possible, so once I could feel my legs and wiggle my toes I was allowed to leave. My dad went to go get the car, and the nurse wheeled me down in the wheelchair.

Now I'm home and going through the healing process. My surgeon told my parents that the tear in my right hip was even larger than my left hip. This also means I now have the two biggest hips he's operated on. Not only was the tear huge, but I had a bone spur that was pressing into my tendon. That was shaved down and my tendon was stretched. He also saw a lot of inflamed tissue because of the tear, but thankfully none around the joint, which means I did not have arthritis or anything of the sort. My surgeon also felt that the tear was so bad that it definitely could be causing all of my pelvic pain. As happy as this makes me, I still think there are more things we have to fix. But I am ecstatic that I am on the right step and that the tear was so significant. I knew this months ago and tried to convince that horrible hip doctor in Princeton. Upon examination, he told me I didn't have a tear and if I did, it would be small and not an issue. I had to beg for an MRI. You can bet I will be writing him a nice letter now that I just went through extensive surgery that he was adamant I would never need.

My pain right now is not bad at all. In fact, I'm doing much better than last year. I am able to slowly move on crutches, and don't need my parents to bend down and slowly push my leg forward. I just need them to help me bring my leg down from the couch or the bed and then put it back up once I go to the bathroom. The one thing different from last year is I'm having really bad back pain from where I was given the spinal epidural. There was a little bit of blood in the hospital, and now it just aches and I have a dull pain, which I was told should be expected. I'm combating this by icing it and my hip as much as possible.

I think that's all for now. I'm in good spirits and ready to finally get myself healthy. I'm so overwhelmed by all the warm wishes, phone calls, and flowers I have received. I am the luckiest patient to be surrounded by so many genuine people.

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 19^th, 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.

Tell the puppet master I am through

I went out driving tonight

Desperately seeking the end of the road.

I kept searching

The further I went, the closer it should be.

I am lost somewhere on that road

Unable to turn around

Unable to see how much further I have left to drive

Staring at the passenger seat

as empty as my head

I feel everything

I think nothing.

Where am I?

-------------------------------

Give me the chance to climb

or I'll suffocate in this altitude.

Give me the chance to exert myself

or I'll forget what my body is capable of.

Give me the chance to feel

something other than this constant pain.

Don't let it dominate my life

I already feel myself slipping away.

Don't let it consume me

I have higher aspirations.

Don't let it take my voice

I have more to say.

Do we define our actions or do they define us?

Who has control?

Tell the puppet master I am through.

-------------------------------

If I am going to fight,

at least let me see my enemy.

If you do not show yourself,

I will go wild and swing blindly.

The V Word

I don't have much time to write, these next two weeks are filled with due dates and appointments. But writing usually gives me some sort of clarity, so off I go.

A lot has happened, so I'm just going to rapid fire here to catch you up. I do have a big tear in my right hip as well. I'm scheduled for the same surgery I had last summer on June 4th. Goodbye summer plans. But I'm grateful for the time I have before my job starts in August. I'm just anxious because it's going to be a process going through the same surgery again. At least I know what to expect.

I am also meeting with a new specialist to address the tears in my pelvis, which I think I will also need surgery for and that would have to happen before hip surgery. I am getting another MRI/consult next week with Dr. Meyers in Philadelphia. I'm very interested to see what he says.

I have not been taking medication recently because I want my mind to be clear as I write my thesis. This means I'm in more physical pain, but I've been finding ways around that. A good friend led me to this website, which has been a lifesaver. They are ice pack pads essentially, and pretty discreet and great for class. They are much easier to hide with baggy pants, but either way, they make sitting a lot easier. I go through about two a class and highly recommend them.

There's a lot of feelings right now, but I don't have the energy or the time to go through them all. I have a lot of stories, but for now, I will leave you with the one from last night. It was my senior WGS class capstone activism project. It was called the F Word Experience. The "f" word- feminist- is not so agreeable with others. It remains a loaded word because it carries many negative (and untrue) connotations. Our class wanted to change this so we had a big event with provocative feminist artwork, and then an event with a video, keynote speakers, personal stories, and dialogue.

Last night I was one of the keynote speakers and I talked about my story, my "V" word. I was very nervous to read it in front of a large-scale audience. It's one thing to write a blog and hide behind my computer, but it's another to stand up and physically speak in front of a crowd. Making up the audience were people I knew, strangers, best friends, professors, high level college authority figures. Some knew my health story and some did not have a clue. I wasn't just nervous, I was terrified. I wanted it to be received correctly. I wasn't looking for pity, I was looking to be empowering and to spread awareness. It was difficult reading the speech because it's always difficult re-living my story. I especially got choked up when mentioning the strong support system I have who was there to support me that night because they have saved me and they are the ones that get me through. After I spoke, I thought I would feel a wave of relief, a lessening of my burden. But I didn't. I got back to my seat on stage and I could not look anyone in the eye. I kept my eyes on the floor because I was too terrified to see people's reactions. What were they thinking? What were they feeling? Is this now how they saw me? I keep saying I don't want this to define my life, that there's so much more to who I am. But lately it has taken over. I received such kind words after the event, but I was still nervous, and I'm still shaken up as I write today. It was an emotional experience, but in hindsight, I'm so glad I was able to do it. I spoke last night for the women who email me who can't even tell their families or friends. I spoke last night for all of us. And this is what I said:

Coming into my freshman year of college, my life was dedicated to activism. I was extremely involved in global organizations, working with young people in war-torn countries, and planning on a career as a diplomat.

This was my life when suddenly I had to turn the attention to within, to myself, which was very unusual for me. I had to put aside my passion of helping others and instead had to become rather selfish and focus on myself. I could not go out and solve the world’s problems without first solving my own.

It was at this time, that my vagina become my world, quite literally everything centered around it. And now, more than three years later, it is still my world. I am conscious of my vagina every second of every day.

This is because during my freshmen year, I experienced a sharp vaginal pain randomly one June afternoon. My life from that point changed forever. The person I am today has been shaped by my struggle, by my battle with my vagina. Over the course of six months, the intense pain I experience daily was misdiagnosed five times. The medical community did not give me answers; everyone was puzzled. Gynecology experts simply waved me away and assumed I was either making up my pain or suffering from the side effects of birth control. One horrible night I was in such intense pain that I was rushed to the emergency room and rudely treate by the male attending physician. He automatically assumed I had an STD because I was complaining of vaginal pain. While suffering from physical and mental pain and confusion, I found myself on the defensive, with my vagina being continuously sexualized, especially by the medical community. I realized at this time how taboo the vagina is and if I were to survive, it would be something I must overcome.

It was not until my sophomore year that I was properly diagnosed with vulvar vestibulitis, a chronic pain condition almost unheard of, yet over a million women knowingly or unknowingly suffer from it. I say some unknowingly suffer from it because there are women who are either too afraid to talk about their pain or are just unaware that their suffering is shared by others. Though it was a relief to finally have a diagnosis and answers, I still had the burden of keeping it a secret from family, friends, and professors simply because it had to do with my vagina. I felt nervous and embarrassed and wished it was a chronic back condition so it would be easier to talk about. I could easily say why I needed an ice pack for my back, but it was very uncomfortable explaining why I needed an ice pack or cushion for my vagina. Then I had my f-word epiphany: I realized that this had to change: I had to help shift societal views of the vagina.

Vagina, vagina, vagina. This is the V word everyone so cautiously avoids. Like the F word, it has many incorrect connotations, and through my experience, I more than ever want to reclaim it.

It has not been an easy process. My diagnosis has since shifted and I am consciously seeking new doctors and new answers. I am tired of carrying the burden just as I am tired of asking for help and being in pain. Many people have not been understanding. But many more have and I am eternally thankful for their support.

Though it is a long struggle which I am still battling, I am no longer nor embarrassed of my vagina. I started a blog three years ago originally intended as an outlet for myself, which has since turned into a support system for women around the world. The intro at the top is the epitome of my story here today: “Vulvodynia is a chronic pain condition affecting millions of women in our world today, yet it continues to be ignored. There is no current cure. In November 2007, I was diagnosed with vulvar vestibulitis, a subtype of vulvodynia. This blog exists to spread awareness because we’ve been silent for too long. I write to expose a taboo subject. I write to form a knowledgeable and supporting community. I write to encourage myself and others. I write in the hope that one day I will write no more.”

After this blog, I no longer hide behind my vagina and hope that some day all women are comfortable enough and free to talk about their vaginas in a nonjudgmental world. This is my wish. This is my expression of feminism.