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.

I dreamed a soul sister

This post is over-due and there's a lot for me to get out. It's not going to be very cohesive because the last few days have been a polarization of personalities. What I mean is right now I feel there are two very different people inside of me. There's the Tamra that knows what's wrong and is trying to stay positive and motivate herself, but there's also the Tamra that is so incredibly frustrated, so pained, that she does not want to be or do what others expect of her. It's been a battle in my mind over the past few days and that can best be described with the songs I Dreamed a Dream from Les Mis and Hey Soul Sister by Train.

Let me explain. Music for me is a release. Music is like poetry- I look to it to find the perfect representation of what I'm feeling. I look to it to uplift me, because somehow if I find the right lyrics, the right beat, it transforms my life and I'm taken to a different place. But there are times when I just feel so lost and afraid and alone that I look to it to commiserate with me.

On Wednesday I had my daily injections, but it was a very different visit. I was having such issues sitting leading up to the visit and quite literally could not get through my classes. I was in so much pain I had to stand, which I am still embarrassed to do. After a check up, we realized my obturator externus and obturator internus muscles were highly sensitive. When I say highly sensitive, I mean when Dr. Kellogg lightly touched them, I jumped off the table in pain. She decided to give me some injections deep into these muscles to try and help me sitting. During the first injection I broke down. I can count on my fingers the number of times I have broken down in doctor's offices, but once I started, I couldn't stop. It was because of the pain at first, but then as she continued, I couldn't help it. I looked at her and she was upset for me and understood everything. She said, "You're tired of this, aren't you?" That's exactly what it was. I am tired. I am broken down. I am defeated. I am tired of no answers and false hope and working hard and putting in the time, yet I get worse. After the four injections in the muscles she asked if I wanted to stop for the day because it was rough and painful and quite enough to go through. I told her might as well do the vaginal injections since I'm there. After those, we talked about much more aggressive treatment, since my muscles are some of the worst she's seen and she is very upset that nothing is working. So right after I graduate we'll be more aggressive, meaning I have to stay here the entire summer for treatment and PT. Fine. All my plans for the summer are ruined, but I understand that health comes first. Fine. But I was upset, so I collected myself after the appointment, waited for the bleeding to go down, then walked back to my car. Of course the one day I would have called a cab, I couldn't find one. Then I rushed back to school to go to staff meeting, and just blasted I Dreamed a Dream on repeat. I felt the same frustration Fantine sings about.

But the tigers come at night

With their voices soft as thunder

As they tear your hope apart

And they turn your dream to shame...

I had a dream my life would be
So different from this hell I'm living
So different now from what it seemed
Now life has killed the dream I dreamed.

Now I understand that's not healthy and not the mindset I should be taking. So after my meeting, the other Tamra quickly took over and I started listening to Hey Soul Sister on repeat. And I listened to it for the next two days and that song is what kept me thinking positively. I started thinking about new plans for my summer- I couldn't do anything athletic, but there are other options. What books could I read? Could I do research with a professor, see old friends, get better at chess, finally learn to cook... I started to plan and found myself calmer and under control.

Fast forward to Thursday when I get a call from my doctor. You might remember him from a previous post as the one who thought I did not have a tear in my right hip and who thought I should be working out more to get in better shape and my pelvic issues shouldn't be a problem. Well, turns out I do have a tear in my right hip. And my MRI scan came back with a variety of other problems- I have a small tear in my pelvis, it's inflamed and there's fluid, etc. etc. The point being that I was right and that there are reasons for my pain.

I sent my MRI reports to my specialist, my PT, and my hip surgeon and I should be hearing back tomorrow if I'm going to need (yet another) hip surgery this summer or what the course of action is. I am going to get them all to communicate with one another so we can finally get on track. Please.

So right now I'm on the eve of finding out a lot of information (hopefully.) It's been a rough weekend. I did not feel like picking myself up anymore. I am sick and tired of things being wrong. I am 22 years old. I am supposed to be graduating in a matter of weeks. I am not supposed to be worrying about my health like this for another 40 years. Right, I know, I know. Self-pity is worthless. But I know these things and I Dreamed a Dream is still on repeat. I can't get my head out of this place right now. I just want a normal life. So desperately. I do not know what I am going to do about class tomorrow. I can't even fathom sitting for a little, not to mention five hours of class. I don't know. I am losing it. I am. I am sick of keeping it together. I know what is expected of me. I sat down and I tried to write my thesis this weekend because I just want to finish and turn something in that's representative of all my hard work these past months. But I just sit and I can't write. And then I can't sit. And I can't focus. And maybe that's partly because of the medicine I'm still on. But I just don't know. Too much has been thrown at me all at once and I just want graduation to be here and to walk and to be done. And at this point I don't even know how I'm going to do that.

I want to crawl into bed and not leave. I want to run away. I want to feel pain elsewhere because I am tired of feeling the same pain day after day. I want to stop asking for help. I want to stop needing the help. I feel so cold right now and shut off. I don't want to be social and there are very few people, if any, that I want to let in. I'm tired of hearing that I am a strong person and that I am going to get through it. I don't want to follow anyone's expectations anymore. I have emails waiting for me to answer that I feel incredibly guilty about. I want to be a role model, and I want to encourage people having similar experiences, but I can't be that person today. I want to lie here and I want to just... I am falling and I can't stop myself anymore.

Lyrics

I've had a few requests for the lyrics to Kayla's song, so I'm re-copying them here.

Isn't it easy, when you can't control things

Life is so simple, when you pull the strings

Doesn't she realize, this is a hard fight

How can I help her see, that this is alright

She is pretty amazing

It's not that difficult of phrasing

But I know it is worth, it's worth praising

And I hope her spirits will be raising

I want to remind her

That she is my rock

I know that the cure will eventually lock

She will move mountains and climb up them too

The world is waiting for her and I always knew

This is a song about Tamra

Which only rhymes with camera

So I hope this song will get you by

Until gravity you will defy.

Quick updates: I need to stop pushing myself. Even putting the elliptical on a slightly higher elevation and resistance caused my pelvis to shift significantly. And it was no fun getting it snapped back into place. Apparently the step master and climbing is the last thing I should be working on because it's so hard on the hip flexors. Great. I will just settle for writing about mountains for now. Back to thesis. (rough draft due tomorrow!)

VAGINA!!!

This post is inspired by an article sent to me by my history professor. Please go read it in its full absurdity here.

I really only have one thing to say after reading this.

Dear TV Networks,

VAGINA! VAGINA! VAGINA!

Love,

Tamra

I have to hand it to the creators of this commercial. You have to be awfully imaginative to make a tampon commercial without saying... vagina. Do television networks really think they're fooling anyone by not mentioning the word? I mean, where do they think the tampon goes? Despite what She's the Man portrayed, it's not in the nose... I don't understand when this became such a dirty word. As humorous as this article is, it's simultaneously incredibly depressing.

Anyway, my personal challenge to each of you is to bring up vagina at least once in public conversation today. Please comment and let me know how it goes.

I just have a quick update about treatments. I had an extremely rough week sitting. This past Monday I had to leave my three hour seminar class because it got so painful. I went to the bathroom and composed myself and then came back and just stood for the remainder of the class. It was frustrating and I was also so nervous that it was partially in my head.

But then I had my appointments yesterday and Dr. Kellogg examined me and I had huge amounts of tension in my piriformis and my adductor. Not only did she inject four needles into my vulva, but she injected those two muscles as well. I have attached images below in case

you don't know where the muscles are. The good news is the injections don't hurt that much into the muscles- they are very tolerable and over in a matter of seconds.

I'm happy to report that sitting today is much more tolerable- so I believe the injections are working. Other than that, I'm continuing to go to PT- my pelvis is still out of place every time I go, so we continue to adjust it back. I also have my MRI this Monday in NYC for my right hip. I'm hoping I don't have a tear, but at least I will know soon enough. That's all for now. VAGINA!

This is a song about Tamra

Do not yell at me for not writing my thesis right now- I needed a break from all the insanity and have a lot of information. But first, I've been wanting to share with you a song my wonderful sister wrote for me. Hopefully she's not going to be too concerned I just posted it for the world to see. I am repeatedly blessed by a strong support system, and some days this video is what gets me by. While it was written for me, I hope it at least makes you smile and reminds you about the support systems in your own lives. And who knows, maybe Kayla will start taking requests.

Yesterday was a jam-packed day of doctor appointments. But it was a good day, despite waking up at 6:40 am for PT and not getting back home to my bed til 12:00 am. PT went well- my pelvis was adjusted and put back into place after a really good work out. I was also taught how to start doing internal work myself, which I will start doing every night. All I'm going to be doing is going in with my thumb while lying down and pressing along the inside to check for tightness and pressure points. I'm supposed to keep a constant pressure, but not too hard. This is a good way to check myself after certain activities and see how my muscles are doing.

I was done by 9:30, so I had plenty of time to sit down and write before my injections. I was not looking forward to them (I'm not sure I'm ever going to be looking forward to them?) especially after the last visit. But I have to say, I walk into that office and Dr. Kellogg really makes my day. I love and respect her- and that is saying a lot about someone who sticks me with 4 needles each week. I told her I had a rough week pain and sitting wise, so she examined me. And surprise, surprise, I have two large hematomas on either side of the lower vulva from where she injected last visit. This brings me to important point #1- Please get yourself a hand mirror and check your vagina. Check it every day, just like you do to your face or your stomach or your butt. Check it and make sure things are okay. I felt like an idiot for not even thinking to look. I guess I previously took the mentality that my vagina gets looked at enough during the week and I'd rather give it its space and privacy as much as possible. Not anymore. As soon as I got home, I took out my mirror to try and find the bruising. I felt a little explorer-like. At first, I found nothing and was a little embarrassed at my navigation skills. But finally, I figured out what I was doing, the seas parted, and there they were. Two giant black and blue marks the size of quarters with some blood trapped underneath. I'm still hitting myself for not checking sooner.

After the quick exam, Dr. Kellogg went to go prep the needles. Before she left, she put on some calming music and told me to relax and meditate and she would be right back. So, I sat there looking up at the ceiling at this pretty picture of the ocean, with some nice piano music playing and tried to control my breathing. This brings me to important point #2- I do not want to meditate right before needles are going into my vagina. Sorry, it's not going to happen. I do not want to stare at this pretty picture of the ocean waves and start to smell sea salt and feel the ocean mist envelop me. And sure, maybe that works for some people, but not me. Your painting on the ceiling and calming music is not going to trick me into some calm state of mind. I need adrenaline, competition, a more me vs. the needles attitude. I'm going to bring a cd next time with Eye of the Tiger on it and expect a nurse to come in and head-butt me right before the injections start.

This time they weren't that bad- we're using a much thinner needle and did them at exactly 6:00 on the vulva, where my pain was most severe. The bleeding was minimal, although this just made me remember important point #3- bring a pad or a liner to injection appointments. RIP lucky orange underwear.

As far as future plans go, we are going to continue with injections. If I do not notice results in a few more weeks, then it's time to go a new route. I was given literature on Capsaicin- a cream derived from red chili peppers, that has been used to treat vulvar vestibulitis. Dr. Kellogg is one of the authors of the study, and after first read-through I am very impressed. They are world-renown for using this cream, but are also heavily criticized because it does create a burning sensation on a woman's vagina. But I completely agree with Dr. Kellogg's rebuttal to these people- I already have burning! And pain! So, it really would not be any different from normal life. But, I don't want to talk about this too much more yet because if I do start the 12 week program, it wouldn't happen for another few weeks. But if you're interested, please read the article "Capsaicin for the treatment of vulvar vestibulitis" American Journal of Obstetrics and Gynecology (2005) 192. 1549-1553. If you have problems finding it, let me know and I will try and get you a copy.

That's all for today. I also added a new song to the playlist- enjoy. And now I must return to my thesis.

Whelmed

This is probably going to be the last post for a week or two because life is more than hectic right now. My senior thesis, which I have been working all year on, is due in the next two and a half weeks, so it's crunch time. I need to be writing around 4 pages a day on top of everything else.

I've caught up on past emails, but please note that my responses will be very slow over the next few weeks because my focus is on graduating. And if you know anything about me, it's graduating well, and not letting all the hard work I've put in over the past four years go to waste in less than two months.

There's a lot on my mind. Treatments are still going well and I'm noticing great improvement. I had a little setback the past few days when I got my period, but as we know this hormonal shift always seems to spark a flare-up. I'm still going once a week for injections with Dr. Kellogg, as well as twice a week for PT, however, I've cut back to once a week just until this thesis is done.

Today I walked in to get injections- four this time. That was a surprise, I was trying to get myself in the mindset to handle two. They hurt a lot more than I remember from last time and actually this time there was a lot of blood, so I stayed for a bit until things calmed down. Walking back was uncomfortable, but sitting for the rest of the day so far has been just fine. I'm still in a good mood because I do have a lot of things to be thankful for right now and I do feel I'm on a good road to recovery. But, I'm still not going to hide my frustrations. It's difficult giving up so much of your week to appointments. I asked some friends today to just tell me it is all going to be worth it in the end. I am constantly reminding myself that it is worth it and if I put the work in now it will be over soon. But that doesn't mean I still don't get frustrated. Walking back I felt a strange mixture of anger at "it" and self-pity. I know neither is good, so I've been shaking the feelings off.

I think as I'm coming closer and closer to graduation, I'm just more and more ready for this to be over and to actually start my life. I don't want to define myself as sick anymore, I want to erase this from my identity. I'll never forget about what I've been through, but I don't want to be consciously aware of it ever second of every day. But, if I've progressed this much in just a few weeks, I do have a lot of hope that my time is coming. In short, I'm anxious, I'm frustrated, I'm hopeful, and I should be writing about Victorian female mountain climbers right now.

Bahamas

Just a quick note to let everyone know I'm away traveling again and have very limited internet. I've received numerous emails in the past week, and just wanted everyone to know that as soon as I get back I will be answering them and doing a proper update. Until then, sun and homework.

A much better day

I have to be honest- I'm a little more than exhausted keeping this blog up to date while juggling school, work, and some semblance of a social life. But I really wanted to get the news out about today because it was such a great day.

First of all, Philadelphia is like a home to me. This probably has a lot to do with the wonderful people I know inside it, but the overall feel just always relaxes me. Traveling to New York was not only a chore but overcrowded and suffocating. I feel like a real person in Philly. I also feel like I regained a lot of my self back from wonderful friends (who I think are well aware who they are) and the environment and just excellent doctors who care.

Yesterday I drove right outside Philly to my new PT, Raven, at Body ReBuilders. I am very excited and thrilled with the office staff, the gym, and Raven herself. What we're doing makes perfect sense to me. First, I workout (which just consisted of half an hour elliptical yesterday) and then Raven evaluates the alignment of my pelvis. After working out, it tilts forward, so she popped it into place (yes physically popped it, noise and all.) She also checked internally vaginally and rectally to see the status of my pelvic floor and muscles. And for the first time in a long time, my rectal muscles felt so relaxed. Literally no pain. Which makes sense because I've noticed sitting has become easier this past week. So it seems the valium is doing its job. Vaginally, my left side still needs a lot of work. And she did feel a "wisp" of muscle tension on my right. In two weeks I have an appointment to start the process of getting my right hip imaged to see if I have a tear there as well. Let's all cross my fingers I don't. It just won't be for awhile because I have to dance through hoops for the insurance companies to be seen and get prescriptions before I can even get myself to New York and get the MRI done.

But back to PT. We didn't start internal work quite yet. I'm seeing Raven twice a week and she wants to get my pelvis stabilized before beginning aggressive internal work. And when we do start, she is also going to be teaching me how so I can speed up the process and also check myself after physical activity to see how my muscles are reacting. Again, this all just makes perfect sense to me. So, after this I did my exercises, which are just working on strengthening my left hip and core. If anyone wants the specific exercises, just drop an email or comment and I will send them. Since I wasn't allowed to do anything else with cardio or my legs, I finished with arm and back workouts. I figure I can at least push myself here and devote my competitive, driven energy into my upper body.

Fast forward to this morning when I saw Dr. Kellogg, who I will not stop raving about. She and her office treats me like a real human being. I was there for over an hour with her and didn't feel like I was taking up her time or being rushed. She definitely knows what she is doing and is personable and I just connect very well with her. Today's visit began with the standard urine test. (ie: I go to the bathroom, pee in the cup, try and empty my bladder, come back, take off my pants, get a quick ultrasound of my lower pelvis to see how much/if any urine is still in my bladder, there was so pants went back on, back to the bathroom, and pee again in this bowl to see how much was left.) From here on out, this will be the P test.

After the P test, I had another test where I inserted a dilator (which resembles a small obnoxious blue penis, from here on out SOMP) and then do two kegel holds to test my strength. The SOMP is connected to a computer which gives my results. Great news is my muscles have already gotten stronger (I believe she said by 17 points, however I am sorry that I have not a clue what scale that is on. But apparently it was tremendous tremendous improvement. So yay, valium suppositories are clearly working. They have been messing with me emotionally this past week, but I actually started feeling better yesterday morning (I even wanted to shower and shave and put on pants and take off my flannel.) However, I still feel a little mentally not there, which is why Dr. Kellogg is halving my dose from 10mg to 5 mg (so I'm just cutting them up myself) and then I'm only taking them Monday, Wednesday, and Friday instead of every night. This way they'll still be helping me and hopefully the side effects will dissipate. I'm also continuing to take the Singulair once a day (anti-asthma medicine) The reason for this is because it is an anti-histamine and there have been case studies of women with VVS (vulvar vestibulitis) and PFD (pelvic floor dysfunction) with 60% increase in histamine levels. So that is the current plan of attack for my muscles.

Now, on to glands. This is the more localized pain around the vulva (5:00-8:00) and the skin surrounding it that hurts upon touch or penetration. The skin is still thin and red and I have been applying the Cromolyn cream twice a day to the area. Now we are getting more aggressive and starting injections (yay!) into the area once a week. Due to the amount of steroids I was on last semester for my tonsils and other illnesses, we opted against steroid injections and instead doing Traumeel, which is a homeopathic anti-inflammatory with no side effects. I had my first two this visit and they weren't bad at all. It lasts for maybe two seconds on each side and there is no blood and no pain afterwards. It actually makes me feel kind of bad-ass because I feel after you've had needles continuously injected into your vagina and valium continuously up your butt, there's really nothing you can't do.

FINALLY, one last medicine- since I seem to have reoccurring yeast infections I am taking Diflucan once a week for awhile as a suppression method. So there you go- the pharmacy that is my life. It might seem overwhelming, but the best part is it's working, it's working, it's working. I've got my hope back. Also, an article recently came out about me and this blog in my college's alumni magazine- thought I'd share it with you here.

I've received tremendous support this past week, and have overwhelming gratitude for everyone who has been helping or even just sending a quick note or text. Believe me, it has not gone unnoticed and was probably one of the few things that got me through this week. I don't know what I'd do without my friends and family. I feel guilty all the time for constantly needing help, support, and a shoulder to lean on, and the last thing I feel is strong. I am more self-conscious and afraid then I tend to express, but it is all of you who continue to motivate me to face my fears. This was another long post, but I just cannot stop saying thank you.

I am falling

not plummeting down

a long,

black

hole,

but through the sands of time,

slowly sinking feet to head,

being swallowed,

until I am gasping for breath.

I am falling

not tumbling over bumps

to

my

knees

but through my inner darkened identity,

slowly stumbling mind to soul,

being erased,

until my Self is lost.

I am falling

not so others can pick me up

but because I cannot stop myself.

I am sinking

physically, emotionally,

losing myself in

this quicksand of struggle.

Where is my strength?

What is strength?

Is it continuing to fight,

to pull myself up

this fraying rope I refuse to release?

Or is true strength

to let my hands waver,

to close my eyes and fall

and wait for a hand.

Is real strength

to stop pretending,

to stop fighting,

to stop searching?

Is real strength

displaying your raw weakness?

I have been falling for years,

grabbing ropes and hands.

When does it stop?

I am going to talk now

I am going to talk now. I haven't talked in over a month. Mostly because I have been scared, frustrated, and unwilling to deal with the situation in front of me. But I am going to talk now because I need to. I do not want pity or sympathy... or maybe somewhere deep inside I do. I am going to try and update as best as I can and I want to apologize for the huge shift. I also want to apologize for the mounds of emails I have sitting in my inbox, starred, and unanswered. I have become numb and I have wanted to forget for awhile. I still do, but I need to try and understand where I am right now.

Two weeks after my last post, when I thought the end was near and it was a smooth walk downhill, I had a bad visit in New York. Somehow, without any changes to my normal way of living, I had gotten tremendously worse. I was back to horrible pain when sitting, as well as vaginal pain. On this day in particular, I had woken up late and rushed to the train station and ran to the waiting train and had barely made it through the doors before they closed. Exhausted, I slept on the train, walked the thirty minutes to the office, and then back again, and back on the train. On the way home, I was so close to sleeping through my stop and ending up in Trenton because I was still so exhausted. New York was exhausting. It took every ounce of energy for me to wake up, get in my car, drive to the train station, sit through the train ride, walk the 20 blocks to the office, sit through an appointment, and then repeat it all to go back home. I hate New York. But I did it because I wanted to get better, and I was willing to put in the work to get the results. I had enough after that appointment. I was tired of falling back and having new pains in different areas of my body. I never knew what was going to happen each visit. I wanted something definite, some definite track to work towards because I was going crazy. I was frustrated and upset and exhausted.

That was the last time I went to New York. And I am thrilled that I never have to set foot there again (for PT.) A week later I went to see Dr. Kellogg in Philadelphia for the first time and the visit was incredible. I have seen more doctors and specialists and PTs then I can count, and this is the first time I really felt connected to my doctor. She was very knowledgeable and knew what she was talking about. And instead of feeling sorry for me, she came up with a plan of attack. A series of steps. I walked into a doctor office with something wrong, and she told me how to fix it. Imagine! Isn't that how it's always supposed to be?

Lots of information about the visit to Dr. Kellogg. First, she did a test where I went to the bathroom and then saw how much urine I still had inside me. I had some, which means my pelvic muscles are obviously weak. Then we did the internal and external exams. My favorite. I don't have to tell you how painful. But it seems that my "vestibulitis" or my skin right around the vulva is not too bad. I was told a 5 on a scale from 1-10 of her patients. An internal vaginal exam was also not bad- there's really nothing wrong there. However, upon a rectal exam, Dr. Kellogg called me, and I quote, "a train wreck." Apparently my pelvic floor is so horribly out of place and messed up. I am one of the worst cases she's seen, but thankfully not the absolute worst. This is why I've been having such problems sitting. This is getting long already, so let's get to her plan of attack. Right now I'm on a bunch of medications. I just finished my yeast infection medicine (I was called a few days after my exam to tell me my culture had come back positive. This is going on at least one yeast infection a month, so when I go see her in a week, I'm going to see what I can do. I eat yogurt all the time and take a probiodic, so I'm not sure what the deal is.) Every day I apply a cromolyn cream twice to the vulva area. Then at night, I take a singulair, which is an anti-asthma medicine, but it's also been used to help muscles relax and relieve tension. Finally (this one's a doozy) I have valum suppositories that I get to stick up my butt every night. Yes. Every night. Jokes are encouraged about this because I'm still in shock.

So, these are the current medications I'm taking. I'm a little nervous because some can affect your mood and make you tired. And that's a horrible flashback to two years ago when I was put on anti-depressants for pain. Right now I do not feel like myself, but I don't think it's entirely because of the medication. Trust me, I have plenty of other things going on in my life that are stressing me out and making me not myself. But I want these to work desperately, so I am just waiting cautiously to see how things progress.

I have a feeling that more aggressive treatments are going to be necessary. I'll get into this at a later date, but if these medicines don't start working, then it looks like I'm going to need botox injections directly into the trigger points that are causing me so much pain. Great. Well, it's not like I haven't had needles in my vagina before. Bring it on. I go see Dr. Kellogg this Wednesday morning, so I'm sure I'll have more information after that visit.

Almost done, I promise. Now that I'm not going into New York anymore, I am seeing a new PT right outside Philadelphia at Body ReBuilders. I went yesterday for my first visit, and I'm very impressed so far. First of all, they have an actual, beautiful gym. So after my manual work, I'm doing cardio, and hip strengthening training, core training, etc. It's a good fit. My new PT evaluated me and told me where we need to work and where I'm the weakest. She wanted to see me three times a week. I almost laughed in her face. Do doctors not realize I'm in school? Somehow I figured out a way to go twice a week. It'll be two hours of driving and probably an hour and a half there, but it's worth it. It's worth it. I'll find the time. I'll post the new exercises I have to do at another later point. The last bit is my right hip has been aggravating me for the past week or so. There's a possibility I might have a tear in that one as well. I am hoping to anyone that will hear me that this is not the case. I don't want to think about another surgery and another recovery. But I need to call Dr. Coleman and get imaging done on that hip ASAP.

So that catches you up on the past month. I am sorry that I have been so far removed and unable to answer questions. But honestly, on the other hand, I'm not. Sometimes I need to just run away, escape, forget that this exists. But it does and I'm taking control right now. How am I doing? I'm still tired and just exhausted. This seems like a full time job and my studies are suffering at school. Not that I'm failing- so far I'm still getting A's. But I'm behind in my thesis and I just don't see how I'm going to get the work done to finish out this year. And you know what? It's not fair. The amount of hours I put in every week to see and call doctors, to do exercises and take medicine. It's too much. The worst part is I'm tired of explaining to professors and to friends. I'm tired of giving excuses of why I can't be places or get things done on time. This has been almost four years of excuses. I'm tired of needing help. I'm tired of being vulnerable. I'm tired of being in pain. I'm tired of carrying this weight.

This past weekend I was in the Vagina Monologues on campus. For those of you who don't know, they are an activist production committed to ending violence against women. I did the Monologue "Because He Liked to Look at It," more commonly referred to as "Bob." The first line of my monologue is "This is how I came to love my vagina." I said it with a smile because my character would have done the same. But every single performance, it was a lie. And every single performance I wanted to say those words and not act them. I'm lost right now. This past month I've run around to many places and seen different people, possibly trying to find something, to try and create my own comfort. I've given up in the lust and love department. It is too hard and just not possible for me right now. I don't know if it's because I can't handle it or others can't handle it. But right now I need to just concentrate on somehow making it through the end of this semester and graduating. And I need to put all my energy into my health and getting better. I need to keep pushing. I think am on the right track and am actually very hopeful, especially with this new specialist. But that doesn't stop me from being absolutely and utterly exhausted.

So I finally talked. And I don't want it to upset anyone. It is not directed towards anyone and it is not call for help or attention. If anything, it's me finally getting my act together and trying to sort through my own problems. Right now I feel like my self is broken in all these tiny pieces and it was too overwhelming before to put back together. But now I'm ready to put in the time and start to find myself again. Thank you for listening.