Dark Night

There is a lot of pain tonight. I have been trying to relax in bed to no avail. I think a lot of it has to do with being sick for the past few days and unable to do my exercises or take my suppositories. A good friend recently reminded me that healing is not a linear process and we will continue to have our ups and downs along this journey.

I'm not one for words tonight. I think the last two poems I wrote sum up my emotions.

I wish for you

a dark night

void of stars.

How else will you see

the moon's white glow

lightly caress

bare black branches?

In the Ring

My life is a constant battle
of bruises and bullies.
Are you fighting too?

Remember, dear friend.
Our scars do not deform us,
they define us.

Go another round.

Injection Day

Confession: It took me a few weeks to finally call and and make an appointment for trigger point injections. I think I speak for a lot of people when I say I hate them, they never get easier, but they are definitely working, so I keep going back. We now want to start doing them weekly since I am making so much progress (yes!), and then slowly cut back to biweekly, and then monthly. I wrote this poem after my appointment yesterday.

Injection Day

I clutch my sweater tighter around my body,
struggling to find warmth and
shuddering not from the morning chill,
but in fear of what is to come a few blocks ahead.

I have been here many mornings,
but the walk never gets easier.
A man on the corner calls out to me.
Would he stop if he knew?

Passing suits push past,
their shoes pounding on the sidewalk.
They race towards their destination
I delay discovering mine.

Couples line the waiting room
Every hand with a companion.
I take out my book and stare at the pages.
I don't even see the words.

My name is called, and I go into the same room
The paper crinkles as I lie down.
Staring up at the ceiling tiles,
I notice there's still a crack in the third row

The countdown begins
1... my arms are folded against my chest
2... but soon grip the table sides
3... as if each needle was the first.

"I'm okay," I say in a flat, steady tone.
The same mantra every time.
I rush to get dressed and quickly walk back.
Same streets, same sounds, same steps.

When I go to the bathroom later,
I notice the small dark stains.
I forgot again.
Another pair ruined.

I have gone through many pairs, many walks.

It never gets easier, but it needs to be done.
Thankfully the next appointment
is not for another two weeks.

"Although the road is never ending
take a step and keep walking,
do not look fearfully into the distance.
On this path let the heart be your guide
for the body is hesitant and full of fear."
-Rumi

Namaste

It seems people are more naturally inclined to expend energy complaining than complimenting. I noticed that when things are going well in my life, I am less apt to update. I realized how important it is to talk about the good times. Recently, I have been focusing on cleansing my life, so I thought it only appropriate to give my blog a mini-makeover. Hopefully you like the new look; I think it's a bit more peaceful. I've also stopped the automatic music and put the player at the bottom of the page, so it's there if you want to listen. Also, some important news... my True Life episode is finally premiering on December 6th at 10 pm on MTV. I am excited in a nervous way because I will be seeing it for the first time along with everyone else, but I do hope it brings awareness to what so many of us are dealing with on a daily basis. Keep your fingers crossed!

Back to life being great. I think the best place to begin is on the elliptical at physical therapy. Last week I begged for some cardio in my workout because I was going crazy from the lack of exercise. No running, no dancing, no hiking, no tennis... between you and me I was ready to just forget the rules and do those things anyway. I was frustrated. So the twenty minutes on the elliptical was the greatest gift my PT could give me. I still remember vividly the first time I stepped up and began to move. I kept my promise and kept the elevation low (sigh) and the resistance low. And it just felt SO GOOD. I cannot describe what it felt like to sweat again, to move again, to feel alive again. It is amazing what endorphins can do.

It's also amazing how much I've grown. Halfway into that first workout, some hot shot basketball player jumped onto the elliptical next to me and started sprinting. I looked down longingly at his elevation, but turned back to my machine quickly. A few months ago I would get try to go as fast and as high as this basketball boy. But new, patient Tamra was just happy for her slow and steady twenty minutes and to feel the sweat pouring down her face. You can't take the competition out of me, but you can alter it. Now I stay in my own world, where I compete against myself and do not compare myself to others. Every time I get on the elliptical, I aim to go farther in the twenty minutes that is given to me. It has been two weeks and already I have been given an extra ten minutes for good behavior. Patience is paying off. I have also lost some weight and slowly fitting back into my jeans that I haven't been able to wear for over a year now. Actually, I found $25 in the pants I finally put on yesterday, so patience is literally paying off.

I think the endorphins have been the jump start to my peacefulness. Not to mention,every time I go to physical therapy I am seeing improvement. At this point my only vaginal pain is directly at 6:00, with the rest of my pain located rectally. My PT is doing a lot of manual therapy to release the muscles, and they are slowly loosening up. I am back on the valium suppositories and they are helping (although I have to wait a week for a new prescription. Turns out the ones I was using expired in June... whoops.) I am also doing manual therapy myself at night, which is pretty simple. You just need gloves and some lubricant. Lie down on your side, and using your thumb, apply light pressure to each muscle, moving around the rim of your rectum. It's important not to engage the muscles too much or you will certainly feel it the next day. I am also continuing my exercises and stretches for my hips and pelvic floor. If you are interested, I can show you. I might even be fancy and make a video of them for next time. I am also started yoga, which incorporates a lot of my routine stretches and is giving me peace of mind. Finally, I have started lifting weights again with my upper body. It's the one thing I am allowed to do full-force, so I am taking advantage with some chest, back, and plenty of arm exercises.

That is it as far as medical updates. I am still driving into Philly twice a week, which is quite the commute, but I am enjoying the long drives with some fantastic music and the solitude of being with myself. I am also working a part time research job from home, so I still feel productive. I am reading a lot, writing a lot of poetry, and practicing the piano.

So, I guess I am trying to say that life is good? I voice some trepidation because I'm in a place that is so foreign to me. My mind and my body have always been prepared for the worse, always stiff waiting for the next awful thing to happen. I think amidst all the appointments, hospital visits, life interruptions, and pain, I had forgotten how to breathe. I cannot describe what I feel now, it is an inner peace that is so refreshing. I think it helps that I am slowing my life down. I am spending nights in my bed, with tea lights dancing in my mirror. Beethoven echoing through the room, a cup of tea, and my notebook. I am going to cafes and other places by myself just to sit and people watch and watch time pass before me. I am no longer a prisoner to it. And I cannot forget the wonderful people in my life who never stop believing in me. I am surrounded by kindred spirits, along with a supportive family who runs with every crazy idea I have. (but that is a story for next time) Until then, namaste. Don't forget to breathe.

"The music is different now. But it's still there."

First an update on the blog- I have added email subscription to make it easier to keep up with the blog. You simply put your email in on the right and will get an email every time I add a new post.

I have been reading a lot of poetry and came across this book online called "Poetry of Pain" by Linda Martinson. She has fibromylagia and used poetry to express her feelings, finding solace in writing. I ordered the book, it's small, but her words are powerful. It resonated with me because I could relate with all the phases of chronic pain that she discusses. I'm going to copy my favorites. Please remember, you're not alone.

Supermarket Concessions

I am paying for my groceries
at the check stand.
"How ya doing?" he asks.
I look at his eyes, tempted
to startle him with the truth.
But he doesn't really want to know.
So I opt for a nice, neutral,
bland word that means nothing.
A fat word that fills the mouth.
"Fine," I say to his shoulder,
"I'm doin' just fine."

Dark Times

I am awash with pain, my tyranny.
It covers me like seaweed,
clinging, stinking;
the salt is in my wounds.

Searing my muscles with perpetual passion,
pain invades my mind,
my privacy.
Afraid I am drowning
when I so want to live,
I cry.

The Yearning

I used to go to sleep
with my head
on his shoulder.
I'd curl into the
hollows of his body
and he'd read to me
from a book
just boring enough.
Oh, how I miss the
intimacies of love!
The prickly outline
of his beard
undulating in the lamplight
as his lips formed words,
the gentle sound vibration
that tickled my hand
as it lay upon his chest,
the soft distraction
of his cheekbone
waiting for my kiss.
Pain,
Oh Wicked Pain,
must you steal this from me too?
Must you dictate
every aspect of my life?
Let me lay
as lovers lie
without your insidious presence,
my head upon his shoulder
once again.

Acceptance

I get so frustrated when I want to work
and I can't because my body fails me.
I grieve for the energy I used to have,
for the days when I would erupt out of bed,
ready to go.

Lost time.
Lost life.

I miss the spontaneity of good health,
when I could do simple things,
like go for a drive,
or dance,
without having to consider the toll
on my body.
I miss the fun.

Still...
I can't let the past rule my today.

So I will recognize my grief,
roll around in it,
and mourn my loss as I would
the death of a beloved child.
For only then can I get beyond it.

The music is different now. But it's still there.

Be ignited

Sorry for the absence. As normal, life has kept me on my toes, but very much off my feet. I was in the hospital for a week with a severe headache and bad blood work. It was a scary time, especially when I got woken up at midnight for a doctor to tell me on the phone I had blood clots in my brain... a diagnosis that was simply "taken back" the next morning. Somewhere a doctor went, "whoops." It's been awhile of not understanding what was wrong with me, meningitis and a rare tick disease were on the table, but after getting some results back today, it seems to be a severe case of mono. So I'm just resting and recovering to get my strength back and going in for blood work every few days to monitor my liver, etc.

This means no surgery in a few days- we'll have to push it back for a month or so until everything returns back to (semi) normal. When I first got out of the hospital I was so relieved and embraced life. That soon transformed into anger and sadness. The whole, "why me," "how much more can I take?" But that has passed quickly and I've moved on to acceptance and appreciation. I am so blessed for the family that continuously takes care of me. I am thankful for the friends who visit me in the hospital, send me cards, come and hang out on the couch at home, call, care, and accept that I have to devote my time to taking care of myself. It is a relief to know they are always there for me and love me unconditionally.

And even though my spirit is growing restless and just wants to get outside and do all the things it loves, I know my body isn't nearly ready. For once, that's fine. If my life needs to slow down, then I am going to enjoy the time with my family, I'm going to write, I'm going to read, and I'm going to live in the moment and not worry about what's going to happen or where my life is going. I'm going to embrace the couch.

I know how scary and frustrating living with pain is, especially when we cannot control it. Yes it's something we have to live with, but it doesn't have to be what we live for. I'm not saying we have to pretend to be happy with the situation or hide from our feelings, but we can look for the little magical moments that make us want to get up in the morning. We have only this life. So cry, laugh, scream, smile, but make sure you allow yourself to feel. I have two things to share with you. The first is an excerpt from a Mary Oliver poem (I highly recommend reading her work.) The second is an original that I wrote the other day while embracing my couch. Warm wishes.

Just yesterday I watched an ant crossing a path,
through the tumbled pine needles she toiled.
And I thought: she will never live another life but this one.
And I thought: if she lives her life with all her strength is she not wonderful and wise?
And I continued this up the miraculous pyramid of everything until I came to myself.

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

The Field

Barefoot and barely breathing
I stepped cautiously out
into the great, wide field-
my feet roughened by the stiff
blades of cold, dead pasture.

Surrounded by silence only broken by
the wind whispering through the night
and the slow breaths escaping from my lips-
I continued forward, searching for the center.

I felt nothing.

Alone and afraid
I sank to my knees,
disappearing into waves of brown.
The wind stopped and
all stood still, waiting.

Imprisoned by my own thoughts
I ignited my escape,
casting it out into the blackness of the night.
And I continued forward, pausing only to glance back.

I watched the flame become a blaze.

Bathing in its fiery glow
I watched the fire dance
under a limitless sky, as the stars joined in
Even the shadows and the smoke swayed
as the field came alive once more.

Engulfed by the crimson glow
and entranced by its crackled cry,
my breath became a pant-
I closed my eyes, feeling the heat take me.

Be ignited or be indifferent.

And if I were fearless/Then I'd speak my truth

hon·es·ty (n)
-the quality or fact of being honest; uprightness and fairness
-truthfulness, sincerity, or frankness
-freedom from deceit or fraud

I consider myself an honest person. I might not be as open as others, but when I do share information, I try to be as sincere as possible. I have been flung into a black hole the past two weeks. I am not sure where I am, what I'm doing, how to get out or stay grounded. And while I'm spinning in this celestial vortex, I've realized how dishonest I am with myself. What is truth? Can I be truthful to everyone but myself? This is an intervention of myself instigated by myself: an attempt to admit my true thoughts and feelings, in the hopes that I can one day embrace them.

1. Sometimes I get really tired of writing in this blog and it just feels like a burden. I have enough information that's happened in the past two weeks to write a series of posts, but I don't feel like going into too much detail. I find it exhausting. So here's the short version: I started my new job in August. I got placed out in Denver, CO and was in the office for two weeks. Towards the end, I was in more pain then I have ever been in the four years since all of this started. I could not sit, I could barely walk, I could not function. And I kept suppressing it, because I had found an apartment and started my job and was supporting myself. I was so happy to be an adult and taking care of myself and no longer being a burden on my friends and family. I wanted to badly to be self-sufficient. I call my parents exactly two weeks ago, late at night. (They were in my car driving it cross country with all my things.) And while I'm sitting on the bathroom floor, my body pulsing with pain, and tears rushing down my face, (remember, I never cry), I told them to turn around and go home because I could not do it anymore. I could not live in Colorado, I could not do my job, I could not be independent. My parents, being the most supportive ones you could ever ask for, calm me down, drive home, and I quit my job and fly back home to finally take care of my health. Believe me, it was not easy admitting to myself that I was unable to pursue anything but getting better. Now I'm back home, seeing my specialists and ACTUALLY putting my health first. I feel like I've always said that, but other things have gotten in the way- school, tennis, social life, just the need to feel normal. I saw Dr. Kellogg last week who said my body is an absolute train wreck. It is at least nice to be validated, to know that I did not make this move back home an additional dramatic turn in my story's plot. I got 15 trigger point injections. (Let me tell you that was fun.) And now I'm seeing her every three weeks and my PT twice a week. Fast forward through this week, where I met with Dr. Meyers (you might remember him from last April- the surgeon I went to see about my pelvic tears.) We scheduled surgery for October 19th. It's going to be a bilateral pelvic floor repair, with bilateral abductor release, and steroid injections around the pubic synthesis.

2. I think I might be turning into a crier. I've been tearing up almost every day, but the waterfalls really came out one night when I was at home. It was ironic because I had been listening to Sara Bareilles' new album Kaleidoscope, with the song, "Let the Rain" on repeat. The lyrics were perfect and were exactly how I felt:

And if I were fearless
Then I'd speak my truth
And the world would hear this
That's what I wish I'd do, yeah

If my hands could hold them you'd see
I'd take all these secrets in me
And I'd move and mold them to be
Something I'd set free

I want to darken in the skies
Open the floodgates up
I want to change my mind
I want to be enough
I want the water in my eyes
I want to cry until the end of time

I remember crying that hard only once my entire life and that was when I first found out about vulvar vestibulitis and my specialist at the time told me it was something I'd have to deal with for the rest of my life. I rode the train back to my ex-boyfriend's house and just could not stop sobbing. The same thing happened this time. I let things get built up inside of me and cannot seem to let them out. I picture it as some dark smoke that slowly fills me up, twisting and turning through all my body's crevices. It suffocates me and clouds my mind and just overtakes me.

3. My 50% post was a lie. The theory and my intentions were sincere, but my attempts at implementation were horrendous. I don't do 50%. I try and I've been trying harder, but it's hard to switch from a 110% mindset. I want to do everything. I want to succeed. I want to be independent. I want to help others. I want to be strong. I want to achieve my goals and surpass my dreams. I want to outshine my own and others' expectations. Right now I am allowed to do three stretches twice a day. I cannot sit for longer than an hour or two, which makes my driving and social time limited. I spend a lot of time in bed. I ice as much as I can, and I don't do any physical activity beyond walking. I am going crazy. I hate it. I am confined and am losing sense of the person I used to be. I am afraid I'm going to lose her.

4. I feel like I am a burden- to my friends, my family. They constantly need to take care of me and I am scared they are going to get fed up or already have. I am currently living at home and crashing at friends' houses nearer to my doctor appointments. I hate asking to stay, not matter how many times I am reassured that it's not inconvenience. I want my own space and my own chance to help those that have given me so much.

5. I'm scared- of being alone for the rest of my life, of never knowing what's wrong with me or how to cure it. I'm scared that I'll never be good enough. Almost everyone I know has coupled off and found someone- in fact almost all the people I used to date. I want someone. I want to be taken care of- I want to have someone holding my hand in the waiting room, being there out of love and not obligation. I want to be wanted without feeling guilty.

6. I have a love/hate relationship with my valium suppositories. I am back to using 10 mg every night, alternating between the front and back. On the one hand, I do think they make a difference and are helping me. On the other hand, they limit what I can do and how well I think. I lose my train of thought and I have crazy dreams.

7. Recently I've been going out on dates with myself to cafes or stores with some silly romantic notion that I am going to interact with someone. I think I just miss flirting and dating and relationships and my body feeling like something other than a medical lifeless corpse. When I saw Dr. Meyers on Tuesday, he made me take off my pants while he and the nurse were in the room. I've never had to do this before, but he wanted to see how my body moved and how I was able to function. It wasn't that I felt uncomfortable- more that I felt upset my life has resorted to stripping and picking out my underwear for doctors.

8. I feel like a failure. Yes, I know people have repeatedly told me that I am not. But I do not quit things. I am almost embarrassed to walk back on campus or be around people from college because I feel I let everyone down. I have no plan right now. I just found a side research job that should keep my mind active, but I have no career plans. I want a plan- I want something to strive for. I want to start writing a memoir- goodness knows I have enough material for it.

9. I feel like this post was a whole lot of whine.

10. While I feel like I'm in a black hole, that doesn't mean there's bursts of shooting stars around me. I am so happy to be back home and see my family and my friends and be with my support system once more. They bring me glimmers of hope, happiness, and brighten an otherwise darkened void.

So there's my dose of honesty. I'm hoping some of you will comment back with some things you want to be truthful about so I don't feel so alone. It doesn't matter if you aren't suffering from this condition- let's have an open forum and be honest with ourselves, even for a moment. If you want, do it anonymously- write about anything. Consider it a PostSecret that saves you a stamp and is guaranteed to be posted online.

Doctors take note.

In preparation for a new book she's writing, Susan Bilheimer, author of Secret Suffering: How Women's Sexual and Pelvic Pain Affects Their Relationships, is conducting a survey examining how medical professionals treat women with invisible illnesses.

Women with vulvodynia (and/or other chronic disorders) are invited to participate in the survey, which can be found at:
http://www.surveymonkey.com/s/TDWVHDW.

I took this survey today and I encourage you all to do the same. Any information we contribute is important to promote awareness and new research. Taking the survey was a little difficult- I had to discuss my thoughts about invisible illness and how it makes me feel. I thought the question about if you purposely dress down and look disheveled for a doctor visit was extremely interesting. Because it happens. I've caught myself doing it before. Sometimes I just want to look sick because I'm tired of people telling me I look so healthy. To remind them that every day is a struggle. Doctors and specialists especially because I've been to the ones that do not believe me. I also like this list of what doctors could do to improve their treatment of women with chronic pain- but this list can be applied to anyone's expectations of medical treatment.

So, doctors, take note. We want you to:

-Take more time with us
-Improve bedside manner
-Select compassionate and patient staff
-Know what questions to ask
-Take our concern about pain more seriously
-Validate our experience
-Have a better understanding of the difference between acute and chronic pain
-Be aware of medical knowledge about these conditions and treatment
-Have the ability to send us to a network of specialists for different aspects of treatment (team approach)
-Listen to, and believe us
-Understand more about the difference between pain and suffering

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.