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?