If the Buddha Dated

A friend of mine shared a book with me to help in some changes I am making regarding my romantic relationship. It is called “If the Buddha Dated: Finding Love On A Spiritual Path”. There are lots of questions asked and many prompts to sit down with a pencil and paper to answer them. Truthfully. In doing so I realized I have never really thought much about what I want in a partner. One of the exercises has you make a mock personals ad based around what you want, and another has you make one based around negative things you think about yourself. So, for perspective, I will be sharing both of them below. I used to think this kind of stuff was silly, and this doesn’t mean I’m joining Tinder, but I’ve learned a lot about myself by being honest with myself (no matter how silly). I recommend it!

Regular Personals Ad:

30 year old woman with a great sense of humor and adventurous spirit seeks partner to laugh and have fun with! Preferably dark and handsome with a humble spirit and conciousness about the world and issues. A lovely partner, lover and friend all around šŸ™‚

Negative Personals Ad:

Fearful 30 year old woman unsure of what to do with herself or life. Anxious, somewhat annoying, very stubborn and quite aggressive in her opinions. Sad and fed up with being ill, but unable to move forward because of it. Sees that as an excuse.

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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? šŸ˜‰

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 makesā€‹ 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.

Hiding

As I continue on my journey of life I feel like I am starting to come out of hiding. Maybe this is what real “growing up” feels like. Maybe being 30 is the shit.

As a child I adopted this hiding thing when I didn’t want to feel my own emotions or those of my family. I would go into my room, lock the door and listen to the positive tunes of Hanson. Sometimes I would write my own music, always starting with lyrics, probably as a way to process the words I was hearing from myself and others. Looking back at these early works, hiding and not feeling heard was a theme.

At other times I would hide in the corner of my closet, carefully hidden behind clothes, hoping for someone to come find me even though I made sure I was so well hidden. I wanted to be alone so I could process my emotions, but I wanted to be found because I wanted to be heard. It was a double edged sword.

As I started entering “adulthood” I believe I got trapped in metaphorical closets of the mind. I was simultaneously starting to experience the serious pain of Endometriosis. I wanted more than ever to be seen and heard, because I didn’t want to be in pain.

There were quite a few closets in my mind. But I told myself I would only be stuck in them temporarily. I was working on that music career while I nannyed for the kid with the crazy mom. I was just surviving. Waiting for someone to listen to me; to come find me. I did that for about a decade.

But all along that person who I needed to listen, who I needed to look for me, has had to be me. I have to open those closet doors. I have to walk out alone.

I Am Waiting

I’ve spent a lot of my life waiting

To see if the pain will stop

To see if I’ll feel better

Waiting

For them to love me

For them to come home

For them to let me go

Waiting

For a true purpose

For the wind to stop blowing

And the weather to get warmer

Waiting

For a parcel in the post

For an epiphany to solidify I am human

And not a ghost

Waiting

For my plane to arrive

And waiting to take off

I’ve spent a lot of my life waiting

For things to begin

And end

 

Endo-ME-triosis

It has been one week since I saw Dr Seckin in New York City and my belief that I have Endometriosis was more or less confirmed (technically speaking Endo can only be confirmed when the tissue removed during surgery is analyzed – but the symptoms make it very obvious).

During this past week I have felt several different things, in stages, such as experiencing grief.

I have been trying to understand where theĀ meĀ comes into this disease. How has this disease shapedĀ meĀ in the course of 15 years (or perhaps my entire lifetime)?

Endo is a mysterious disease that hasn’t really been figured out yet. Where does it come from? Who knows. Is there a cure? Not yet. Is is common? YES. 176 million women worldwide and 1 in 10 in the United States have it.

There is this idea that if I am “cleaned out” I will be better. I will be rid of the disease. I would have to haveĀ deep excision surgery for this to be so, but it is expensive (out-of-pocketĀ $25,000!!!)Ā and no Endo surgery guarantees that the pain will go away or that the disease won’t come back.

How do I manage and live with it is what I keep coming back to. Even if I have surgery, will I still technically have the disease in my body for the rest of my life? How does that defineĀ me?

Tuesday, fucking Tuesday!

Part II of my trip to NYC. Once again from the train (thanks for the free, good WiFi Amtrak):

I have stage one Endometriosis (out of four – four being the worst)! It feels so good to say that.

After 15 years of bullshit, Dr Seckin told it to me straight. I have it, he can clean it out with deep excision surgery (not theĀ all too common and harmful laser) and then I should be good to go.

Of course he can’t guarantee that it will never come back during my life time, but I have lived with it for 15 years too long. If I can have 15 years pain free after surgery I’ll take it!

It could be done as soon as May or June, but financing is the tricky bit. I’m getting all the info sent over from the office tomorrow, so I don’t know the cost yet. But he works out-of-network with all insurances, meaning you have to have good out-of-network benefits for any or all of it to be covered. I have Rhode Island Medicaid, which has been great in Rhode Island, but obviously will not work whatsoever in New York. So, I could likely change to a plan that might cover some of it, but how much would that cost per month and what would it cover?

I’m not worried about any of that. I’ll figure it out. I have followed my gut and stuck to my guns on this journey thus far, so I will continue to do so.

Fucking Tuesday for the win, am I right?!

Tuesday

Good things happen on Tuesdays. Airfare is cheap. It’s a good day to travel. It’s an unassuming day. People are just getting on with things on Tuesday.

For me, this might be the most important Tuesday in 15 years. I am on the train to New York City to see the Endometriosis specialist Dr Seckin.

I get really anxious when I go to the doctor. The thing with me is, is that I tell doctors everything that is going on and suggest what it might be. I dare say I know more than them when it comes to my health. In fact, I was the first person to figure out I might have Endometriosis, years before a doctor even used the term. I’m agressive.

After years of feeling like I was not being listened to by most medical professionals, I adopted this behavior. I feel that it got me to where I am today, on this train, going to see a specialist.

But every time I see any doctor I get anxious. I’ve been let down so many fucking times I barely have any hope left each time I have to talk aboutā€‹ my symptoms again.  Will they listen to me this time? For real? Will they just tell me how to manage my “condition” for the next 6 months, next year, next five?

I hope today is different. I hope today is the most important Tuesday in 15 years.

I AM A WARRIOR

Chronic pain is a lot of things, and it obviously makes you feel a lot of things, but most of all it’s just an annoying little bitch.

I could go into the depths of my pain, but quite frankly I’m tired of talking about it and would like to just get on with things. I don’t think humans are designed to fully understand each other’s pain. It’s a unique experience; solitary.

Piggybacking on last week’s Bad Ass Book List, I thought I would dive right into another list. This time I’d like to share the music I listen to that makes me feel powerful and hopeful in times of pain. I feel like sharing what we love about music is a really positive thing to do, and I think it’s really important to spread little bits of positivity about whenever possible.

POWERFUL:

Warrior by Aurora

From my favorite album of 2016, All My Demons Greeting Me as a Friend, Aurora suggests a kinder approach to being a warrior; a warrior of love. Aurora exudes love not only in her recorded music but also in her live performances. The chorus of this song also makes for a really great pick me up whenever you need a boost.

 

Cool Slut by Chastity Belt

Chastity Belt take back the word slut by making it fun and positive. That’s powerful. “We just wanna have some fun, try to bone everyone.”

 

People Have The Power by Patti Smith

This song is actually both powerful and hopeful, because people have the power to redeem the work of fools (YA KNOW WHAT I MEAN)! Patti makes the world make sense.

 

HOPEFUL:

From Nowhere by Dan Croll

It’s not so much the lyrics in this one that make me hopeful, but the music and what Dan created as a whole on his debut album Sweet Disarray (and what is to come on his upcoming second album). As an added bonus, I was introduced to him live, opening for none other than Aurora. At the time I was not feeling very hopeful about anything (probably because this was the weekend before Election Day in the USA), so you can imagine my renewed sense of hope after letting Dan into my heart.

 

Lucky by Aurora

Another track from the wonderful  All My Demons Greeting Me as a Friend, Aurora sings about troubles past, present and future, but with an understanding that she is simply just lucky to be alive.

 

Serenading In The Trenches by Sondre Lerche

I just love Sondre’s new album Pleasure so much I wanted to share what might be my favorite track and video. Sondre himself sump up the video best: “I wanted to play out romantic relationships, sexual relationships, even a father and son type thing ā€“ to really have us touch on almost any kind of deep relationship that two men, or even a woman and a man might have. We [Sondre and his drummer Dave, who co-stars in the video] know each other so well, and we enjoy each other so much, I thought it would be really beautiful for us to take on all these different relations in a video.”