Thursday, March 20, 2014

My Endometriosis Story by Tamia Jordan, M.Ed.

Story by Tamia Jordan, M.Ed.

My earliest memory of just knowing something was off was in 1999. I remember being told by physicians, “you’re healthy as a horse,” “you’ll have to pay another copay (as in I’m not using this visit to investigate your concerns),” and whole host of other silly things. Then, in 2007 (8 loooooong years later), when I was finally diagnosed with uterine fibroids they were huge. Now I’m a petite person and I was told they were the size of a five-month pregnancy.
So I knew I had to have surgery but I put it off as long as possible. Then in 2010 (eleven looooooong years later) I had my first myomectomy (an open one) during which I was diagnosed with endometriosis. I guess the hard part is that all that time, in all those years, was not all bad. However, the times that were bad were excruciating and debilitating and scary as hell and life altering in the sense that I made life decisions based on my fears of my future physical condition.
It’s also worth noting that, due to the size of my fibroids, my first surgery didn’t go so well. Now I don’t recall as much as those who were not on serious drugs at the time might recall. But I do recall, very vividly, the statements the doctors made to me as they rolled me into an emergency second surgery late that evening. I won’t go into all that here, but know that I knew that saving my life was the primary objective. So when I woke up in ICU the next day, I had a ton of questions because I didn’t know what all they had to do.
Thankfully additional internal stitches and five blood transfusions and platelets were enough. So then I spent that day and the next in the ICU with amazing professional care and with friends visiting and playing games all the while I was getting hangry (hungry + angry – I’m especially #2) as hell cause they would not feed me until certain physiological conditions were met.
To date I’ve had three-ish surgeries in four years: an open myomectomy w/ an appendectomy because apparently I’d had an appendicitis but missed it due to my freakishly high tolerance for pain** (what can I say, I didn’t feel well the week before, but I kept it moving #EndoWarrior), a laproscopic myomectomy in 2012, and a hysteroscopic myomectomy in 2013. (I say three-ish because my first surgery resulted in my need to have that second surgery that same evening.)There is so so so much more to this story that I’ll have to post a part two at some point but for right now I want to shift focus. I’ll be honest it’s because I don’t want to think about the pain**, the fear, or the ridiculous crap some licensed physicians did or did not do to me. But it’s not just that I don’t want to talk about it. I also wish to shift focus because, as I sit here and reflect on the past and the stress that fibroids and endo have been, I am also very conscious of a parallel tale…
…And this will sound absolutely crazy: I am unbelievably grateful to endo and even for past days of excruciating pain.** Why the hell?!: Because that pain taught me how to lean. And I am extremely grateful to endo, and for those days of past excruciating pain,** for showing me beyond a shadow of a doubt who in my world can and will support my weight when I’m leaning:
I’m thankful for the people who allow(ed) me to call, even in the middle of the night, when I wasn’t feeling well.
I’m thankful for those who have been willing to take me to and from the doctor when I could not take myself.
I’m thankful to those who have held my hand on my way into surgery and who have been there when I woke up.
I am thankful to the ICU angels from surgery number 1 (and 1b). Seemingly a prerequisite to being an ICU nurse is to be one of the best people on earth.I’m thankful for my friend who taught me to meditate and who continues to meditate with me from time to time. Sometimes meditation is/was the difference between me leaving the house for the day or surrendering to pain for the day. Meditation is wicked powerful friends.
I am thankful to my kitty cat, Grace Anne, who just knows how to take care of me when I’m not well. #PetOwnersGetThis
I’m thankful for and to the people who cooked for me and cleaned for me or just sat with me.
I am thankful that I have a somewhat flexible job and an understanding team and supervisor.
I am incredibly thankful that I have good health insurance. And I am thankful that, going forward, I cannot be denied health insurance due to my pre-existing condition thanks to The Affordable Care Act.
I’m thankful to all my doctors and all the surgeons. The latter many of whom I will never know.
I am thankful for an amazing encounter with a phlebotomist who transformed my experience with blood draws.
I’m thankful for my newest doctors at the Boston Center for Endometriosis. They performed my last surgery in July and have a different, positive, energy around these issues than I’ve experienced with other doctors in the decade previous.
I am thankful to Lisa and Laura and Dr. Z. I am thankful for CBT because “I’m not always in pain.” I am incredibly grateful for the many people in my life who never make me feel like I am a burden. I am thankful for and to those who gave me cash to take a taxi when I had to go home, bringing me peanut butter (because PB&J is my power pellet) when I ran out and couldn’t get it for myself, sending me quotes and words of inspiration and cards and flowers and cookies, driving me around town when I just needed to get out, driving my car when I couldn’t drive it home…
And on and on and on and on and on and on…
Now do I wish that I’d been able to discern these things on my own without the help of endo? Absolutely! I’m not crazy and I’m not going to lie and say, “I wouldn’t trade this…” …cause I would trade it for some things. But I will say this: endo separates the cowards from the brave. It can bring you to your knees and really show you what you’re made of. Also endo sifts out the ride-or-die from the punks. It has a way of showing you who is going to be there for you no matter what. And it provides a thorough answer to the question, “What would love do?”

Tamia Rashima Jordan, M.Ed. is originally from Hackensack, NJ. Having lived in NJ, VA, VT, and NC she has happily settled in Boston, MA where she is Director of Student Activities at Berklee College of Music. She attended the University of Virginia and graduated with a BA in Government and African American Studies. She received her M.Ed. in Higher Education Student Affairs Administration from the University of Vermont. An educator first, tamia is also an event planner, a published author, and a blogger of her own site where she writes about the intersections of pop culture and her life and various identities. tamia is on the Executive Committee of the Center for Church and Prison where she actively works to end the epidemic of mass incarceration and mitigate the disturbing results of the War on Drugs. She also works to create more options for returning citizens to thrive. In her free time Tamia is a proud Black Girl Nerd who loves music, films, fantasy novels and the beach.

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