Pain and Life

Let me start off by saying something: I am not an expert on this. There is so much I don't know and don't understand about diseases (especially endometriosis), even the ones I've researched over time and the ones I've been talked about to by countless health care professionals. Diseases and diagnoses change every day, but I'm sharing, with you, my own personal experiences with diagnosis and medication and hope.

There are a lot of things I’ll talk about with my friends. I’m not embarrassed or afraid of most subjects, but when it comes to myself and my pain, I tend to shut down and only unleash what is wrong in small, frustrated bursts. This year, after a lot of thinking and the help of absolutely incredible friends (Holly and Charlotte, just to name a couple), I’ve realized it’s okay to talk about it, and to admit that I was completely scared, confused, and had absolutely no idea what to do.

Which brings me to this: I want to talk about endometriosis.

Many of you on my list know that I’ve been struggling for a long time with chronic pain in my pelvis and debilitating menstrual cramps. I first got my period when I was 10 years old, and it’s been hell ever since. My periods have been erratic, painful, and more disruptive in my every day life than I can fully explain. I never know when it’s coming, I have cramps that induce vomiting and crippling all over pain, and there are times where I’ve bled for up to 4 weeks at a time.

I’ve been to countless specialists, before I lost my insurance, and some of them would touch on things like endometriosis or PCOS (polycystic ovarian syndrome, a whole other beast), but nobody had any real answers for me. I would be put on birth control or given pain killers and told to just get through it.

I want to say to you, if you’re suffering from anything similar, that you DO NOT have to “just get through it.” That level of pain and discomfort during your period, it’s NOT normal. Don’t let someone tell you it’s supposed to hurt that badly, because it isn’t. Severe pain isn’t a symptom of your period, it’s a symptom of something that is wrong.

Endometriosis. This occurs when the endometrial tissue, that annoying tissue that lines your uterus and sheds during your period, grows somewhere outside of your uterus. It can grow on your ovaries, your fallopian tubes, anywhere around your uterus. This also means it can grow on your bladder, or your bowels, or any other organs simply near your uterus. It can even, in very severe cases, grow in other places in your body. It’s like a ninja tissue that can fight its way to anything inside your body and plant roots.

That tissue grows, and when your hormones get going and you start your period, that tissue sheds. When that tissue is on other parts of your body and starts to bleed, it irritates those parts of the body, which, in many cases, is what causes so much pain.

The trouble is, there are some women who feel absolutely nothing and have endometrial tissue growing everywhere, and the only reason they discover it is because they can’t get pregnant (yeah, that scar tissue that builds up from this nasty business can cause infertility.) Then there are instances where women feel extremely severe pain and have only small amounts of endometriosis.

Now that we have the lesson on painful mensturation out of the way, I'll get to the point of this post: I’ve promised to be more open about my medical issues with my friends and family, and to be completely honest, it has helped me so much.
I might have endometriosis.

Here’s the thing: It’s really hard to diagnose this problem. Another really difficult thing, in my situation, is that I do not have health insurance. Besides the chronic pelvic pain, my bladder is affected either by endometriosis or by something else, and the feeling of having to urinate never goes away. This affects my daily routine; I can’t sleep well because of pain and constant bladder irritation, I have to coordinate any trips I take outside of the house around whether or not there will be bathrooms available, and I have to gauge how I’m feeling at the time, trying to predict if I will be in too much pain to make it through said outing.

Besides that bladder and pelvic pain/irritation/discomfort, my family is plagued with rheumatoid arthritis. I won’t get into a lengthy discussion on RA; it’s chronic pain, where your joints break down and hurt like the dickens. My father was diagnosed with RA at age 17. My older sister was diagnosed with RA around age 27-28, and my younger sister at age 22. My mother has osteoarthritis.

I have an appointment soon to have myself tested, but we all know the answer. I have some kind of arthritis. My left thumb continues to warp and deform. It’s at the point where I can’t straighten it fully anymore. I feel like there is cotton in between my joints at all times, and there is constant pain in my fingers, my knees, my ankles, my elbows...many, many places.

My GP has given me some medicine used to treat patients for fibromyalgia, in hopes that it would soothe some of the all over body pain I experience, and has suggested I talk to my rheumatologist about possible fibro in when I go for my appointment.

Here’s another thing about chronic diseases: A lot of them occur together. There’s a good chance that if you have one, you’ll get another. I’m not saying it’s definite, that you’ll have more than one chronic disease in your lifetime. I’m saying there’s an increased risk of it. For example, if you have RA, there’s a good chance you could get fibro. If you have endometriosis, there’s a good chance you might also have interstitial cystitis or fibromyalgia along with it.

These are all things I need to have tested. These are all things that are done by specialists, and are really damn expensive to take care of. These are all things that affect my every day life, and keep me from living and working and taking care of myself the way I promised I would when I was younger.

I’ve gone to social services. I don’t qualify for medicaid or disability or anything as such. They were very kind there, and explained that there are so many people who are in a situation like mine, who slip through the cracks. I want to say, though, that as much as I’ve felt like giving up, and as many times as I HAVE almost given up, that there is someone out there who can help.

Right now, I’m on a drug called Lupron. I went to a gynecologist (called all around, to find the best rate, and this office really helped me out with payments and such) and he told me that IF I have endometriosis, there is a good likelihood that this drug will determine it, without the need for surgery (which will save my bank account in the long run). It’s a drug that makes your body go through menopause for a while, so it shuts your ovaries down. If you have endometriosis, it should, if it works, shrink that tissue because it will no longer have those menstural hormones to feed on. He told me that if I don’t feel better, then it’s a pretty safe bet that I do not have endometriosis, and should consult a urologist about interstitial cystitis (also known as painful bladder syndrome).

(Though there is a chance that my pelvic pain could lighten, and I will still have bladder problems, in which case I need to consult a urologist anyway, because endo and IC often occur together and exhibit a lot of overlapping symptoms.)

Lupron is super expensive. For four months of shots, it was going to cost me somewhere between $3,000-4,000. Remember, I’m uninsured. All of these visits and medicines add up. I still have somewhere around $6,000 in medical bills from the last three years. (I'm in the process of trying to take care of them).

I really want to explain, though, that there are programs in place to help. It might take forever and a day to find them, which it did in my case, and it might still cost you in the long-term, financially, but it'll be worth it in the long-term. I’ve been dealing with unanswered questions from doctors for around 13 years now, ever since my first gynecological exam when I was 15. But here’s the cool thing: I called and emailed everyone. I called/emailed everyone I knew, and then I called/emailed everyone THEY knew. And my friends called and asked around. My mom called, my dear friend, Julia, asked around. We contacted everyone, and it was tiring and frustrating, but guess what? I got the injections I needed from the company’s charity program.

I’m lucky enough to have a lot of support, especially from my dear friends from Twitter, most of whom I met through the love of the show Psych. I wouldn’t still be here, trying to make it through this if it weren’t for many of them. I’m not ashamed to say I’ve tried to give up many times during this whole process. Pain does things to a person that can’t be explained, especially to people who have never experienced chronic, long-term, debilitating pain.

I’m not the worst-off person in the world. I’m lucky, contrary to belief (my dearest heart of hearts likes to say my luck is like a cosmic joke being played on me by the universe who enjoys watching me suffer. I guess this is what I get for being born on April fool’s day.)

I guess I really just wanted to get this out there, for someone who doesn’t understand pain, and for those wondering what it is I’m always moaning about when I tweet something along the lines of, “UGH HIGH PAIN DAY KILL ME NOW I HATE EVERYTHING.”

Hey, some days you can get through and others you can’t. Yelling, screaming and crying are the only things that feel right sometimes.

Just, there is support out there. Be honest, and don’t give up on trying to find it. Yes, it’s easier said than done, believe me. I’ve been there. Hell, I’m still there. But I have to try.

Hopefully these injections do the trick for the pelvic and bladder trouble. I don’t know what it is I have, so it’s a lot of trial and error at this point, but the support of my friends and family and absolutely wonderful fandoms really mean the world to me.

<3 Jenn

"Train" by Nyles Lannon

I've been listening to this song called, "Train" by Nyles Lannon. It came on shuffle last night, and I had never heard it before. I don't remember ever downloading it, but it's in my purchased folder on iTunes; apparently I bought it a while back and just never listened to it. It's on a soundtrack to a movie I've never heard of, and frankly, it took me by surprise. It's not the lyrics, because I've hardly listened to them, to be perfectly honest. They seem nice enough, as I've caught snippets through the music.

The music, paired with the singer's voice, is just so soothing. I'm ready to pull up a blanket, sip my coffee and burrow into a book right now with this song playing in the background. How else can I describe it? It's just plain lovely.

Listen to a clip here: http://www.last.fm/music/Nyles+Lannon

In other news, I'm trying to teach myself how to play the guitar using the internet as my teacher. I've discovered one major thing: My fingers are short and I need a guitar with a smaller neck. The guitar I have is a hand-me-down, so it's definitely good to start out with, doing some practice stuff. I hope to get my own one day, though. Preferably one my fingers can fit.

Bon Iver

Things have been extremely complicated over the past few months. I don't want to get too detailed because I don't know if I can. Khim, to whom this blog is and always will be dedicated, passed away in May. She is so missed, but I take comfort in knowing she is in heaven, free from pain. I will always love her, and everything I write here will be for her.

I don't want to write about one song today. I want to recommend an entire album: Bon Iver's self titled album that was released a few weeks ago. "Perth", "Holocene", "Calgary"...just to name a few favorite songs. Every one of them evokes a different emotion inside of me that I'm unsure there are adequate adjectives to describe them. I feel unsure; I feel excitement; I feel joy; I feel sadness. The lyrics are, as always, abstract. But it's the music itself that captures me. It's one of the most beautiful albums I've heard all year, and I recommend it with all my heart to anyone who truly enjoys such simplicity, yet utterly complex sound. It's a contradiction, but such a stunningly beautiful one and the only way I can honestly explain it.

Listen to "Perth", the first song on the album, here: http://www.youtube.com/watch?v=iIluBvQ77Bk

"To Build A Home" - The Cinematic Orchestra

On January 25th, I was in a car accident. I lost a lot of my creative energy due to it and have neglected this blog, but it slowly returned to me and I really am doing okay. Physical therapy hopefully won't last much longer.

I do have a request, for anyone who reads this: Please pray for Khim, whose strength and courage after all she's been through is truly inspiring. She's my hero. She's one of the strongest women I've ever known, and I pray for her recovery every day of my life. I ask you to say a prayer as well, or just think of her if praying isn't your thing. She's an incredible young lady.

This song, "To Build A Home" is one I will constantly come back to. One thing I love about certain songs is when they can pull off those dramatic climbs in the music. Not really a slow build, but sort of, only done multiple times in a song. "White Blank Page" by Mumford and Sons is an awesome example, and this song, by The Cinematic Orchestra is one that effectively pulls it off. Sometimes it's not something I want in a song, but it's wonderful in this case.

Not only is the music spectacular, but the lyrics are just so poetic that I almost feel like bursting into tears sometimes. I love it when a song does that to me! Check these out:

Out in the garden where we planted the seeds
There is a tree as old as me
Branches were sewn by the color of green
Ground had arose and passed it's knees

By the cracks of the skin I climbed to the top
I climbed the tree to see the world
When the gusts came around to blow me down
I held on as tightly as you held onto me

Truly breathtaking.

You can listen here: http://www.youtube.com/watch?v=_f8h1xtkb0U&feature=related

"With You" - Nate Stone

I hope you had a nice holiday, Khim. Things were slightly crazy in my little corner of the world, so I hope yours was a little more calm. 2011 is going to be a good year, I think. The year things start to look up. I have faith in this.

One of my dear friends sent me an iTunes gift card for Christmas, so you can imagine my crazy excitement when I stumbled into their music store. I always get a little flustered because I want everything, but I'm taking my time and searching for songs that really speak to me.

The song I picked this time is "With You" by Nate stone. I fell in love with his voice while listening. It's so deep and meaningful, and I can just close my eyes and feel it inside me. I'm very into these singer/songwriter type songs lately (as well as folk music) and this just hit the spot. The lyrics are simple and sweet, the music soft and beautiful. I just love everything about it.

Listen to it here: http://www.youtube.com/watch?v=YF4Eojr7J0M

Have a wonderful weekend, honey.

"Nothing Else Matters" - Original Bedroom Rockers

I'm not sure if I shared this song with Schelz, but I really think it's one of those songs you two will thoroughly enjoy.

First of all, it's haunting. The whole tone of it, and I really love that kind of song. It also has a very cool sound to it, along with the beautiful lead vocals. I really love songs that have unique openings, and this is one of those songs.

Really, I'm not quite sure what else to say about it except that I just love it. I love the sound of it, I love the lyrics, and I love how it makes me feel when I listen to it. I think you will too, Khim.

Listen to it here: http://www.youtube.com/watch?v=B-WFnJBPBo4

"Sorrow" - The National

So Khim - I had planned to go in a completely different direction than this, but I just couldn't. This song grabbed me by everything I am. Not sure if I can really explain why, but I'm going to try anyway.

It's a bittersweet song, really. Mournful. But it's not depressing, at least not to me. I think that's because I find it so damn beautiful. The music is what first grabbed me, because it grows. It starts out strumming along and it just grows, it builds, gets stronger as the song moves along. It's really incredible to me, because I didn't notice it at first; not until I got to the end and I found myself slightly out of breath.

Also, the lyrics are distressingly gorgeous:

Sorrow found me when I was young
Sorrow waited, sorrow won
Sorrow, they put me on the pill
It's in my honey, it's in my milk

Don't leave my hyper heart alone on the water
Cover me in rag and bone sympathy
Cause I don't wanna get over you
I don't wanna get over you

Just absolutely stunning.

Listen to it HERE, honey.

I hope your week is going well!