In The Meantime

A month ago I trekked to New York City to see an Endometriosis specialist. I blogged twice that day, feeling excited about what I found out during my visit. I didn’t feel like my life completely and suddenly changed, but I did feel a small weight lift in just knowing that I have Endometriosis. Putting a name to the pain seems to be something us humans need to do, especially when it is chronic. I wasn’t surprised I felt the way I did, but I also wasn’t surprised that I didn’t feel completely different.

I have become so skeptical over the past 15 years to the point where I rarely do what anyone says, so you can imagine how I might react to a doctor (a surgeon at that) telling me he’ll “clean me out” and then I’ll be “good to go”.

Sure, surgery has felt like the only option as far as long term results go, but I’m still skeptical. Surprised? 😉

I’ve gotten this far in life without my body being cut open, so I not only feel skeptical but extremely cautious about just jumping into it and thinking it will fix everything. Is there not another way?

Through the several people I have met with Endo, stories I’ve read and medical texts I have poured over, it seems that it is simply just different for each person. A lot of us with Endo know that changes in diet are very helpful, especially when it comes to pain and inflammation. I, for example, have cut out gluten, soy, dairy (except grass fed butter), meat, alcohol, caffeine and processed sugar. I am a tailored vegetarian of sorts, and it has made a difference.

Natural remedies have also made a difference, including a castor oil pack recommended to me by my acupuncturist who has worked in fertility clinics. In fact, I have been lucky enough to have just started weekly acupuncture treatments with the aforementioned acupuncturist who has known me since childhood and done emergency treatments after painful episodes during my teen years. I have already noticed my anger and anxiety around the disease moving through my body to where I am fully feeling and experiencing it. I am working with my emotions instead of pushing them aside or back down into my body. There is definitely an emotional component that comes with Endometriosis.

The other shifts I have noticed since starting acupuncture are with my physical symptoms. I have not had to urinate as frequently (some Endo symptoms seem similar to pregnancy, but instead you’re pregnant with the spawn of Satan and not a human) nor have I had as many irritable bowel problems (I haven’t been diagnosed with IBS, but it’s clear to see Endo is causing it and who needs a ton of lame diagnoses anyway).

Seeing even these small improvements in a short time period has made me very curious about this disease and the non-surgical/non-synthetic methods that could be used to manage and possibly eradicate it. My body always responds quicker and better when I use natural remedies versus synthetic.

It makes​ sense. Herbs have been used for healing purposes since forever. Chinese medicine is ancient. We are apart of nature, so why not utilize it to heal us?

From a more practical side, natural remedies are more affordable (at least in the United States) than a lot of synthetic options and most certainly surgery.

Because we do not have universal healthcare, things can be much more difficult when you do need prescription drugs, surgery or long term treatment.

Right now in this country most surgeries for Endometriosis are considered “experimental”, despite the fact that 1 in 10 women have the disease and that surgery is quite a common occurrence. Most women have to pay out of pocket for the surgery itself, with usually only the hospital stay and anesthesia covered by insurance. This leaves the patient with the highest part of the bill!

I was quoted by the office in NYC $25,000 for the surgery portion. The hospital stay would be about $5,000 and the anesthesia $2,500. But wait, there’s more! I would also have to have a physical, bloodwork and EKG all done at the hospital where the surgery would take place, which would be around $450. I would also need another consultation with the doctor (the first one was $625) and a visit with a therapist. I was not given any extra price points for this, but I really wouldn’t be surprised if it was not “included” in any of the aforementioned amounts.

After receiving all of this information in an email that looked like it was copied and pasted, I replied in a timely manner with several clearly asked questions. I did not hear back for what turned into weeks because I was too annoyed to call the office and find out what the deal was. Finally I had some adrenaline and called to see what was up. The person I was emailing with answered the phone and had in fact received my email, but somehow missed it at the time it was sent. So they started haphazardly answering my questions, but really seemed like they needed to get off the phone. Luckily I was thinking on my feet and continued to ask more questions to a point where I felt like I was getting something out of them. I felt like a spy interrogating someone. Sheesh.

I found out several things. One being that because I am not a resident of New York State I would have to pay out of pocket for everything. The doctor works out of network with all insurances anyway, so even if I were a resident it’s very likely that only the hospital stay and anesthesia would be covered (and maybe the pre-op tests). I could change my insurance from Rhode Island Medicaid to a plan I would have to pay hundreds of dollars per month for, but how much money would that really save me? It’s all water under the bridge at this point.

They also told me the surgical fee could be brought down to $20,000 depending on my case. Great (sarcasm). Is this some kind of lottery on women’s bodies? Who decides if my body is worth less or more?

I asked about a payment plan, but the company that used to offer this is no longer with them. So they just don’t offer that option anymore because I guess that was that.

So I asked what other people have done (to the best of their knowledge, which was obviously not much). They said most people just “come up with” the money (ok, so they rob a bank), do an online fundraiser like GoFundMe or charge it to their credit card (which means they have a great credit score and a card with a very high limit).

I asked about other specialists, anywhere in this big-ass country, and was told that they are all basically like this doctor in NYC. They even said he is on the cheaper end (to the best of their not-so-great knowledge).

I told them that I don’t think I can afford this and they apologized for not being able to help me more. Ha. Ha. HA. I said I would think about the information I was given anyway, and be in touch in a few months if anything changed with my situation. They hung up the phone by saying “see ya later”.

So, here I am with these options in front of me. Inevitable stress and invasive surgery or a potentially long journey of natural healing and personal growth.

I’ll just be over here eating some gluten free toast and drowning my sorrows in hemp seed oil (for real helps with cramps and inflammation though) in the meantime.

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Let’s Talk About Stress

This week I thought I would be sharing how my appointment went with Dr. Seckin, the Endometriosis specialist in New York City.

However, last week (literally the last week of winter) a snow storm by the name of Stella hit everywhere between D.C. and Boston. It conveniently shut shit down the day before I was supposed to travel and just two days before my appointment.

But I didn’t let my adrenal glands kick into high gear too quickly. I took a deep breath…

Then mumbled to myself “You’re testing my patience Endometriosis”, whilst calmly making all the needed changes to my itinerary.

I really feel like I handled the whole situation well (no stress-induced headaches involved), and even got to treat myself to finally seeing the beauty that is the film Moonlight.

But I was tested again, because I still went to NYC for 26 hours, just two days after the storm.

Why the fuck would I do that?

Because I couldn’t miss seeing Patti Smith, amongst others, play at Carnegie Hall for Philip Glass’ 80th Birthday Celebration!

This was scheduled for the day after my appointment and was one of two planned “fun things”. The other was a free taping of The Daily Show with Trevor Noah, which was cancelled anyway (one day, Trevor… one day).

Luckily, this was also the one day I was there with friends, who brought light to the darkness that is Manhattan (because the buildings there are so goddamn tall the sun barely hits the streets).

So I conquered the shit out of that city. I walked slow. I was nice to people. Oh and I smiled while I was there. I’m sure no one noticed though. For a place with such tall buildings, no one looks up enough.

I asked, “What would His Holiness The Dalai Lama do whilst here?”

“He would laugh!”, said one of my friends.

So I sat in the back of a taxi moving one inch per minute, and laughed. I laughed at the kids on the school bus making funny faces at me. I laughed at how ridiculous it is to take your dog out for a poo in a concrete jungle. I laughed at Iggy Pop shaking his bum on the stage of Carnegie Hall.

Erin 1, Stress 0.