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.

When you believe

Now we are not afraid
Although we know there's much to fear
We were moving mountains long
Before we knew we could

There can be miracles, when you believe
Though hope is frail, it's hard to kill
Who knows what miracles you can achieve
When you believe, somehow you will
You will when you believe.

I have never felt this hopeful or happy in three years. I finally can tell how far I have come and how much progress I have made. It hasn't been easy and I know my journey isn't over yet, but I can finally envision an end to all of this. I went into NY today for therapy and haven't gone in over a month now because of travel. It was the easiest appointment I have ever had. My muscles have become much more relaxed and the sharp pain is now localized to the very small bottom of the vulva. I think this will be corrected when I see Dr. Kellogg in two weeks and we start using estrogen and other creams to build up the tissue. But I cannot rant enough how painless this visit was!!!! My body is finally feeling the way it should.

Walking back to the train station, I could not stop grinning. In my head I was skipping, doing cartwheels, shouting, exploding with happiness. It really does just take time. I have been to PT with Stacey for a year and a half now and have gone through major hip surgery. We have been on quite the physical and emotional journey, but our efforts are working due to perseverance, dedication, and strength. I can do things now I wouldn't dream of a few years ago, even a few months ago. I can sit for longer than an hour without pain. I can be intimate. I can climb mountains. I am getting myself back. So I'm telling those of you who are not having a good day or are on the more difficult part of your path to keep going. Two years ago I was having a break down on my bathroom floor, bawling from emotional and physical weight. I could not even imagine that a day like this would come. But it can. Do not give up. Keep climbing.

Some food for thought

I sit out on the dock in solitude,
the steady sway interrupted by the drum of the waves.

I stare out at the watery abyss,
an azure horizon interrupted by golden hues.

I speak out through the descending darkness,
a driving thought interrupted by my uncertainty.

am I running away from myself,
or running towards my Self?

Back from the land of Oz

Finally back from my vacation and wow, it was great to get away. It gave me time to think and relax, and just celebrate life.

Surprisingly, the airplane flights were not too bad. I used the lidocaine patches for the longer flights and they did last the full 15 hours. There was obviously some discomfort, but it was easy enough to fall asleep.

I haven't been to physical therapy in weeks, and won't get a chance to go back til the first week in February, but I have been feeling great recently. I'm sorry for being vague, but I'm going to end here and go back and finally answer all your emails that have been piling up.

:)

Off to Australia

I hope everyone is having a good holiday. I had a good time with my family and now I'm off to Australia for two weeks and then Chicago for a week. I will try and answer some more emails while I'm gone and perhaps update. Right now I have made an appointment with Dr. Kellogg of the Pelvic and Sexual Health Institute in Philadelphia. Her first available was the beginning of February, so I'm interested to hear what she has to say.

Since the flight is going to be 21 hours today, I brought a lot of Lidocaine patches. I also plan on getting up and moving so I am not sitting too long.

Have a Happy New Year!

Back to Basics

I'm a little too proud of the clever title of today's post. I'm in the middle of finals, but finally have some time to sit down and update. For all those who have emailed me this past week- I promise I will get back to you very shortly. I'm currently in a Border's after my first appointment back to Beyond Basics. Currently searching for a power outlet... why are there never enough? Physical therapy today was very difficult. As much as I take pride in being proactive, there is also something to be said for not having any PT for three weeks. I've been so focused on my tonsils and getting through that surgery, that I forgot about dealing with this problem. That may seem a little crazy, but I'm sure others will agree. It still hurts just as muc, but when I am not going to therapy or specialist appointments, I also don't have to face and constantly re-access my health condition. Obviously that's what we should be trying to do in order to get better, but it is nice to have that burden lifted for even a short while. I almost convince myself I'm living a normal life. But I digress. Today was back to reality, and a pretty harsh reality check at that.

I've noticed these past two weeks that my gluteus muscles in particular have been extremely tight and uncontrollable. By this I mean they are constantly in a locked position and no matter what I do, they are impossible to release. This is what makes sitting so difficult and painful. Today we did a lot of deep connective tissue work, which had me jumping off the table. I am usually pretty good at just breathing and relaxing and handling the pain, but my muscles were fired up. It was very noticeable, and it might have been the tightest I have been in months. Interestingly, my right side was the most painful. Stacey thinks I'm overcompensating again for my left hip. I also have to go back now and get an MRI of my right hip because there might be something be wrong. I'll have to go back, because I thought I did have my right hip looked at, but maybe things have changed. I sure hope not.

Below is a diagram of your glutes just so I can better demonstrate where the pain was radiating from. If you look at the bottom of the red muscles, the pain was strongest on the inside, following that reddish curve upwards. It was a sharp, direct pain, and now that it has been worked on, is pulsing and extremely sensitive.

This is where all the work was done today and it was greatly needed. I felt a little release when I tried sitting again, but the problem is I'm too sore and in pain to notice a difference just yet. I think after tomorrow I should see some improvement. We went over some better ways for me to sit. First of all, if you ever see me cross my legs, yell at me. I always forget since it's such a natural inclination. I should be sitting all the way back in a chair with my stomach released and my legs positioned at 90 degree angles. Even more important, when I am ready to stand, I have to keep my legs straight (and not turn them inwards) and stand up with equal pressure on both sides of my body. These are things I need to try and be more conscious of because I'm sure they will make a difference in the contraction of my muscles. Now that I'm surgery-free, I also need to get back on the elliptical to loosen up my body, as well as resume core work, hip stretches, and dilator exercises. So, it's back to work and back to basics. (Oh circular narratives...)

Body Image

By age 17, 78% of American girls are unhappy with their bodies.

The average American woman is 5’4” tall and weighs 140 pounds. The average American model is 5’11” tall and weighs 117 pounds.

One out of every four college aged women has an eating disorder.

Love starts with you! Consciously look in the mirror every day and cherish the person staring back at you. Life is too short to obsess over pounds and inches. Get off the scale, but maintain healthy habits. Learn to see your beauty. Love your body!

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.)