"Birds make great sky-circles
of their freedom.
How do they learn it?
They fall, and falling,
they are given wings."

-Rumi (translated by Coleman Barks)

Tuesday, January 22, 2013

Pain's grasp

I promised more updates and exciting news over this winter break which has come and gone. However, circumstances arose and people very close to me needed my attention and care. Now I am back in school, starting my second semester and don't have the free time I need to begin my project. What I hope to put together my next break is a small collection of poetry, entries, and thoughts I have developed over the years living with pain. It's not to be simply a motivational book, but the journey one goes through when suffering. I have found my best companion during the worst times to be quotes and poems and books and hope to generate a similar companion for others to have. Anyway, that's a small glimpse of what's to come.

Like always, a lot has happened since I last wrote. I did in fact run that half marathon I was training for and I treasured every mile. After all the surgeries and invasive treatments, I was elated to see my body perform and enjoy itself. I remember the days I hobbled around the kitchen table, where each step seemed to be a mile.

Last semester I continued to see a pelvic floor specialist at UPenn and was very impressed with my results. It is amazing how much physical therapy has lowered my pain levels. Unfortunately the therapist I was seeing moved to a different practice recently. I am currently looking for someone new, but it is difficult to balance with my most challenging semester ahead of me. I have been focusing more on maintaining pain levels myself. There are numerous stretches I do for my hip flexors and piriformis. I'm avoiding sitting for long periods of time, especially on uncomfortable surfaces. I am also spending more time doing yoga and utilizing my stim pack on my piriformis to get me through lectures. It's also a big help to have my boyfriend or good friends use their elbows to work on my trigger points.

Things have been going very well, but this past week was a bit of a setback. I think it was a mixture of starting a new semester, dealing with different stresses, and even the weather outside. I had more pain than normal and I was a bit depressed (mostly from feeling the pain in higher intensity.) I found myself retreating to my room and lying on bed, submitting to pain's grasp. Sometimes I don't feel strong enough to fight it off. Mostly I am tired that I need to actively fight it off every day. Don't get me wrong- I have been so happy the past year and things have changed significantly. It's just difficult when pain slowly creeps back in and takes hold of you. I know there's many people out there who know the feeling for many different reasons. I think it is important to know that you don't have to be strong all the time. It is okay to be upset and think it's unfair. All of us have moments we break down. What makes us strong is getting back up in the morning and tackling a new day. Sometimes we need help. But ultimately we lift our own heads back up and keep going.

"...Yet if I could instruct
myself, if we could learn to learn from pain
even as it grasps us    if the mind, the mind that lives
in this body could refuse    to let itself be crushed
in that grasp    it would loosen    Pain would have to stand
off from me and listen    its dark breath still on me
but the mind could begin to speak to pain
and pain would have to answer:

                                                 We are older now

we have met before    these are my hands before your eyes
my figure blotting out    all that is not mine
I am the pain of division    creator of divisions...
                                               And remember
I have no existence    apart from you"

from Splittings by Adrienne Rich in A Dream of a Common Language

2 comments:

Elizabeth Mcleod said...

After having a baby by C-sec. I commuted 2 hours each work "shift", hiked, swam, skied,raked, shoveled for 18 yrs.
In 2006 I felt strange spasms in my rectum while driving home home from work. What had been a 40 minute commute had become an hour.
After I got out of the car I was fine. If I drove an hour or more later, no spasms?
I saw my G.P. and I told her about the spasms.I told her that I was never constipated.Stool samples had no blood in them.The doctor felt I should have a colonoscopy.
This routine test in my case exacerbated the nerve compression that was happening in my right pelvis
A year later that I had an acute case of pudendal, anal and rectal nerve compressions. Nerves that had caught up in scars had moved due to me being so active and had tethered indolently to a ligament in my lower right buttock.
Do you have pudendal neuralgia that is not life sustaining? I had to stand for 3 years as I could not sit or lie down. Physiotherapy made it worse.
One needs to sleep and not be bothered by nocturia( night peeing )that leaves one in burning pain and unable to return to slumber.
Meditation, breathing and praying will not heal this condition.
Pudendal nerve blocks done properly under imaging by an expert is needed. After even one done correctly, the suspect pudendal nerve can be identified and there IS pain relief. I felt electrocuted for 11 months until I had my first block!
I had to be assertive in seeking a help from a neurologist elsewhere. He told me what the treatment plan is for someone like me. My pain specialist would have none of it?
I wanted to live. I wanted to heal and get back to a job I loved. No one would help me?
I eventually got to the MAPS pain clinic in Edina, Minnesota and Dr. Stanley Antolak did the testing and a block and "confirmed" I had a right pudenal compression neuropathy and that I needed more blocks and possibly surgery.
Guess what? My province paid the $20,000.00 for this wonderful specialist to firmly diagnose me, I was brushed off again. My G.P. did not believe it and my pain specialist dropped me!I had been left standing all day and on ineffective medicines with no sleep for 1.5 years!!!
I was being sent back to work and I knew I could not perform any of the tasks involved so I emailed the Minnesotan doctor.
He saved my life and sent papers on my case to two new pain specialists. They played games and paperwork that should have been sent to an expert neurosurgeon and to the Ministry of Health did not get sent?! Why not? I was near dying at this point from fatigue and frustration as the pain is unbearable and I was tired of standing all the time.
Due to having faith, God put me in the path of a registered nurse consultant. I did not look for her;she came my way.
Within 4 months of hiring her, paperwork that should have been seen by the only neurosurgeon who does nerve releases in my province( and who works at the very hospital I have for 28 years!!! ) allowed for me to finally get the surgery I had needed since February 2008...the last day I have been able to sit.
I am slowly getting better. I live the way Dr. Antolak told me to with his self care and when I do I do not have "flare ups". If I lift anything heavy, if I sit in a recliner longer for too long...I get flare ups. I can sit in the car with a heating pas on low for 10 minutes.
After 12 months of slow walking I started aqua size classes and I pace myself. I want to get some muscle strength back.
I am also paying myself to get laser therapy and to get injections into the scar, rectum and anus with vitamin B1, B6 and B12. It is slowly helping. I can sit in the bathtub!!
I highly recommend the surgery for sufferers whose nerve blocks did not alleviate the pain and for those who cannot sit and know they were active in their youth and adulthood. My surgery found three nerves attached to a ligament...those nerves were released. I pray you get a second chance at life like I did. I do not know how I survived. Peace and may you find a doctor who will be open to surgery...most will not.

Esther said...

And remember
I have no existence apart from you

I love this line!!

I'm glad to see you back! I know exactly what you mean about the rise and fall of dealing with pain, and I completely agree with your statement about how it's okay to let pain sideline us for a while. Because the energy to fight it off does come around again, and it's senseless to try to push through the pain when there is no shame or loss in pausing to recoup our energy.

Good luck this semester!! I'm glad you have a good suppot system.