February 17... It Begins!

Today was my doctor's appointment, after which I said I would update people on my status... so here we go.  I start my Lupron injections on February 17!  I don't know a whole lot after that, but after the past year, the side effects don't seem very bad to me and for what would help my body, the effects may actually end up being positive.  

(no idea if that is what my actual label will look like)

For 2-3 weeks after the initial shot there may be a flare-up of pain.  My doctor explained exactly why to me in scientific terms and it made total sense, but I can't remember exactly what she said.  It had something to do with stimulating a certain hormone when it starts and then eventually it actually prevents that hormone from firing (?).  I always like when she explains things and yet for some of the more advanced biology answers I do not always remember everything.  For what concerns me, there could be an initial flare-up in pain.

Also, Lupron is not a quick fix, although we both are hopeful that it will be a fix.  For one, I learned that the hormones in my system from the Depo shots that I have been getting can last up to a year in the body, especially since I have been getting the shots more often than the "standard" dosage.  The good news is that since I have been getting them regularly, my estrogen levels are lower than a normal person so the shift to even lower levels will not be as drastic.  (I believe she said also that right now I have high progesterone levels, but those will decrease with the Lupron).  

(Estrogen and Progesterone levels in a normal, ovulating female - Not me, but just for reference)

Three weeks after I get my first injection, I see the doctor again and she will decide if I need any hormone replacement therapy to supplement the Lupron and get a grasp of my symptoms/side effects, etc.  The actual Lupron injections are every three (3) months.  The side-effects are most closely related to Menopause, but some people have a problem sleeping at all, which I had not known.  Hot flashes are common, and other than that, we will just see what happens.  I will not be adjusting other medications for a while after the Lupron starts and while the initial flare-up pain won't last, overall pain may not decrease for three months.  Even at that time, if I'm feeling better, I will likely still continue to feel better for while and then eventually things will even out and we can assess how I am.  

(Basically, this could be me... without the pained expression... There are totally worse things!)

I still feel really good about doing this.  It's a little frustrating that because my body is being flooded with hormones and they don't just change overnight (think of pregnancy hormones and how they decrease gradually after giving birth), it will take some time to see how I will finally feel.  Now that I've said that though, I'm not going to worry or think about it because that's the thing I cannot change.  I'm making a big change and I feel calm and even a little excited to try this and hopeful that it will work.  And while it won't be overnight, I'll still feel better slowly, which sounds great AND I will not be dealing with all the side effects of the Depo shot anymore! (Hallelujah!!)  That part I am super excited about!  Also, I should be able to exercise more regularly and be able to do more and more activities as the time passes... which is my ultimate goal: to be able to do everything I used to be able to do.  I don't know if that's going to be the final outcome, but until proven otherwise, it continues to be my goal.

And that, Ladies and Gentlemen, is all I know right now!  I look ahead at 2015 with much more excitement than past years and I'm still hopeful that this will be a really good thing for me!

Doctor's Visit - December 2014 (or Endometriosis: Episode 4, A New Hope)

(Love this sentiment, but have been wondering if this is true lately)

I will end up talking about this with many people in my life, but this also feels totally appropriate for my blog.  I had a visit with my Ob/Gyn doctor (Dr. K) yesterday and made a decision that could lead to some difficult but ultimately positive changes.  Most importantly, I decided I'm ready to try Lupron, the drug that I had resisted trying for so long because of the side effects.  I've written about it before on this blog (so you could search for those posts) but in simple terms: it causes your body to go into menopause.

Kanye West: IT IS NOT OKAY

I know that I need to update about where I've been the last couple of weeks, and I will, but there's something I would normally give three seconds of thought too that has been sitting with me.  I find it cringe-worthy to be about to write more about this person, but I am feeling the need.  As those of you who keep an eye on entertainment news already know, Kanye West had a concert recently.  For those of you who don't already know to what I am referring, at this concert, Kanye demanded that every single person in the audience get on his or her feet.  (Already obnoxious... these concert-goers are basically paying his salary, they should be able to sit or stand as they please).  He then stopped his show entirely because he saw two people in the audience who remained sitting.  It turns out that both of those two people were handicapped and that is why they did not stand.  One person had a prosthetic leg and the other was confined to a wheelchair.  Kanye then had his security go VERIFY with the person in the wheelchair that the person had proof of disability.  First, I don't even know what that is.  A wheelchair seems like pretty good proof to me.  Second, he has already embarrassed these two people who paid money to go to his concert.  And third, and this is what gets me, what would Kanye have done if there was someone there who had a disability or handicap or injury that WASN'T readily apparent to the eye?  What if someone was in the early stages of pregnancy and feeling dizzy?  Or recovering from knee surgery but off of crutches?  What if this was a hemophiliac who didn't want to get too jostled by the crowd?  Or, because this blog is all about me, had endometriosis.  It didn't click with me how absurd this stunt was until I thought about if I had been in attendance at that concert.  

Ready To Take MY Challenge...?

I have recently been thinking about two things and I have only now realized that they are basically the same thing.  First, I was thinking about an answer to the question I have been asked by so many people: "What can I do to help?"  I don't really have an answer to that because other than love and support, the things I need are medical.  Second, I kept thinking about how, on all sorts of websites, I am being inundated  by videos of celebrities doing the "ALS Ice Bucket Challenge."  I thought that was a cool and fun way to bring a lot of awareness to a terrible disease.  So then it hit me... What would be the most helpful would be to find our own "ice bucket challenge" to raise awareness about endometriosis!

Buzzfeed Article: 17 Things Women With Endometriosis Are Tired of Explaining

My friend, C, sent me a link to this article.  The longer I think about it, the more I love it.  A popular site, BuzzFeed, published this, which I love!  Also, it is a really simple list but it hits home incredibly well.  I related to every item on this list and by the end I was wanting to yell "Yes!" out loud.  So if you have endometriosis, I think you will love this list and if you don't have endometriosis, it is something to think about.  Not all of these questions are bad because some of them are quite caring really.  It's just the repetitive nature of answering them that I relate to quite well.  
*I DID NOT WRITE THE FOLLOWING:

(Please click "Read More" below to read the article).

Endometriosis Research Center

After spending some time researching different links, I am happy to say that I finally found that there is an actual Endometriosis Research Center.  Its headquarters are located in Florida.  I changed my Amazon Smile account to donate to them because they are more in line with what I care about.  They have a website: http://www.endocenter.org/ that you can look at if you are interested.  I looked around a fair amount but I plan on continuing to see what things are available through their site.  For now, I am just glad to see this exists!  I have looked for a lot of information on the internet but somehow I missed this site or didn't enter the correct search combination, so I was excited to find it.

There is a lot of information to be found there, but I found this page: http://www.endocenter.org/killercramps.htm contains a LOT of information from basic information to treatment options to even a quiz to help women who suspect they may have endometriosis.  So for my post today, I would like you to take a moment and either look at that page since it probably contains one fact you do not know or just peruse the site in general.  I did that myself and I think they have one of the better websites.  (I will say I went looking to change my Amazon Smile donation site after I looked more into the foundation I had picked and found their website to be severely lacking, and the information outdated.  I hope it's just the website, but wow.  Not a good sign for people searching for information about endometriosis).

EDIT: There seems to be a formatting problem with this article when I publish it.  I don't know why and I can't fix it because it only appears when published.  Sorry for the weird look.

The Real Me

There is something I've been wanting to address for a while now but I guess it was never the right time.  For me, the time is now.  The images and words between/above/below the text feel very personal to me in this post.  I have realized that there is a glaring and important difference in people's perception of me as opposed to my actual experience while I was being diagnosed and up until my surgery and for a few months after.  The perception is I "dropped off the face of the earth," that I "wouldn't respond in a timely manner," that I didn't call back quickly or that I wasn't responding the way that others may have felt I should have responded.  I have a huge problem with all of those statements and I have a problem that nobody noticed...

Solstice Study

"The Pain You Feel Is Real, Even If You Can't See It."

That is the slogan for a commercial I saw on Tuesday, while my mom was sleeping and getting her chemo meds. I was watching tv when a commercial came on about endometriosis.  The fact that there is any commercial made me smile.  This one is about a new clinical trial but at least it gives a name to a disease people need more information about and also identified symptoms, which I think is greatly important for general knowledge.  The study is for the Solstice Study. If anyone is interested, click HERE. 

As I have stated before, I would LOVE for these studies to be successful.  I am so happy that they are available and I would love to sign up, but I am not willing to take the 50% chance of receiving a placebo, while still having to stop all hormone treatment.  I hope there are women who are at a point where they are able to participate because I think research is incredibly important for endometriosis.  I still can't wrap my head around the fact that this disease can only be concretely diagnosed via surgery.  It just seems crazy.  If I had an unlimited supply of money, my first priority would be better diagnostic tools and my second would be what this study is trying to do... find a better way to treat pain.  So I say to everyone involved in this study: GOOD LUCK!!! 

Invisible Emotions

In the past 72 hours, I feel like I have fought a war, won a battle and maybe seen a glimpse of some rays of light.  I have felt: empowered, betrayed, craziness, misunderstood, frustrated, hurt, reassured, saddened, angry, attacked, truthful, determined, supported, relief, drained, loved, tired, annoyed, amazed, understood, reinforced, and loved.  

That's a lot of emotions for any person to go through in a short period of time.  The fact that most of my emotions stemmed from family interactions made it all the more intense for me.  In life, family can probably cause more stress than a lot of things.  With endometriosis, these stresses can become stressors that can cause setbacks if they are allowed in.  I have spent, what seems to me, so much energy trying to simply explain to people what is real for me and how I feel and what is going on inside my body.  It all seems so easy for me because I know exactly how I feel all the time.  I would imagine a lot of people with an invisible illness know how I'm feeling.

Invisible Illness

I have recently begun to think a lot about a term I've heard: Invisible Illness.  These are chronic illnesses (Endometriosis, Lupus, MS, many others) that are not apparent upon first glance, or upon just looking at a person.  Wikipedia has an entry for "invisible disability" which you can look at but wasn't worded well enough for my liking.  I acknowledge that there are many of these illnesses world-wide and I support people becoming more familiar with them and raising awareness about them, but this is my blog so I'm going to keep this post confined to endometriosis.

Thoughts (Breast Cancer and Endometriosis)

I didn't really know what to title this post.  It feels intensely personal.  It's just some thoughts and observations I've been having as I deal with endometriosis and as I also watch my mother deal (bravely) with breast cancer.  It is wonderful how much support and how much of a sense of community they try to give to these women when they are newly diagnosed, as well as throughout the process.  I've been impressed and surprised along the way with how much generosity there is for women with breast cancer.  She has access to a nutritionist, to breast cancer gatherings, even to a garden, I believe.  My mom received a hand-made blanket to have for her chemo treatment.  These blankets are made by hand and donated to the hospitals for chemo patients.  She received a free wig, which I have seen online at a cost of hundreds of dollars.  Since losing your hair is one of the biggest fears for someone going through chemotherapy, I know a wig doesn't alleviate that fear but having someone available and not having to worry about cost are two less things to worry about and that's huge.  There are even small handmade items throughout the process.  Knitted caps, handmade bookmarks and bracelets. 

Endometriosis: A Key to Healing Through Nutrition

(buy this book!)

I recently got a book from Amazon (here is the link) entitled Endometriosis: A Key to Healing Through Nutrition, written by Dian Shepperson Mills & Michael Vernon.  I had decided to look into nutrition, so this seemed like a good purchase for me.  I was expecting lots of recipes, in-depth diet tips, etc.  I have to say, it is not exactly what I had been expecting (there are some recipes), but I think it's a great book nonetheless.

If I were just beginning with endometriosis, this would be a book I would want to read.  It provides a solid basis of understanding to a lot of the early questions that I had.  It is written a lot like a textbook and I was impressed with the depth the book was able to go into while still covering the scope of the disease.  There are also helpful chapter summaries that will give you the important points covered in the chapter.  I have already used quite a lot of post-its on my copy!

Fear

ALGOPHOBIA: Fear Of Pain.  Fear is something that I've touched on in other blog entries but have never fully-fleshed out in terms of my meaning.  With endometriosis (or, I would assume, with most chronic illnesses), fear is a very real thing.  

I have dealt with a lot of different fears since even before learning I had endometriosis.  I had the fear of pain from the beginning.  Not paper cut pain but pain that was so pervasive, it makes it so you can't even think right.  Pain that consumes and haunts your entire life.  I had PAIN at the very beginning, before getting proper medications and before having surgery.  The memory of that type of pain is scary.  I do not want to go back there.  I know I have had very few days of pain like that since I have had proper medications, a knowledgeable doctor, and surgery, but I now notice every twinge and in the back of my mind I am hoping that twinge is not signaling the start of pain.

Common Misconceptions about the Chronically Ill

The following is an awesome article I was sent by a friend of mine. (Thank you, K).  I read it and really connected to all the points, having had people around me hold these misconceptions, particularly numbers 1, 4 & 5.  This is an article originally published December 5, 2013 by Toni Bernhard, J.D.  I take absolutely no credit for any of what is posted below.  The original link is here.

_____________________________________________________

Six Common Misconceptions about the Chronically Ill

What those who are healthy rarely understand about those who are sick or in pain

Published on December 5, 2013 by Toni Bernhard, J.D. in Turning Straw Into Gold

More often than not, chronic illness and chronic pain go hand-in-hand, so when I use the term “chronically ill,” I’m including people who are in chronic pain. My hope is that it won’t be long until these common misconceptions become uncommon ones, as people become educated about what life is like for those who suffer from chronic illness (130 million in the U.S. alone).

Note From the Author

Author's Note: This is a blog about my journey with my disease.  I write about things in my life that affect me on that journey.  Many people have asked me more questions about my mother... I appreciate all the concern and love, but I will not be writing about other people in this forum.  I don't use names and I am not going to presume to write about anyone else.  Obviously there are life events that impact how I am feeling, how much pain I am having, the stress level of the day, etc.  I will write about or touch upon these things as they can cause problems for people with endometriosis.  My aunt's death, my mother's cancer... these things affect many people who love them and each person will react differently.  This blog, however, focuses solely on me, my struggle with endometriosis, learning to live with that, and my journey along the way.  I am not telling you how a death may have felt to anyone else, or how I would feel about a parent having cancer if I wasn't also sick.  Endometriosis colors everything in my world right now and I am telling my story and feelings from that perspective.  

My purpose here is: to educate as much as I can to help people understand endometriosis; to give myself a place to explore my feelings and reactions solely thinking about me; to try to connect with friends, loved ones or others with this disease because I think it is so important to be able to see that you are not alone, your suffering is real, and other women out there are able to empathize and understand your experience.

Thank you for reading.

Pain

There are some words in life that I think encompass too broad a spectrum to be meaningful.  Cold... are we talking 40 degrees or -15 degrees.  It makes a difference.  Love... there are so many different variations and levels and intensities of love that sometimes I think having one word doesn't do all the people we love in different ways justice.  PAIN.  Pain is not a word I thought a whole lot about before I developed endometriosis symptoms.  I'd wager a lot of money that I had a different perception of menstrual cramps/pain than a lot of women, but we don't have any way to convey that accurately.  It is also completely subjective so what is painful to one person may not be to another.  When I first developed symptoms, the best way for me to describe my pain was to say that it felt like I was having menstrual cramps and pain associated with my period that just never went away.  But I realized that that was not enough to explain how badly I was feeling because most people probably don't experience excruciating pain one day a month.

En-Doe-Mee-Tree-Oh-Sis

Yep, I have a crappy disease/sickness/whatever that is called "endometriosis."  It's a crappy disease already, so why does it need such a crappy name??  It's just a word that does not suggest anything positive.  It's also clunky to keep saying.  It's awkward and hard for other people to remember.  And even if someone does not know what it is, any high school graduate can guess it has to do with reproductive organs and right away that can shut some conversations down.  Especially with men who don't understand the whole menstrual cycle thing already.  And for a disease that needs to be more well-known, well this is not helping our cause.  I think most well-known diseases have better, catchier names: Ebola, Cancer, Bird Flu.  

I think it needs another name.  Even when I write about it, I find myself using pronouns or not wanting to type out "endometriosis."  It is just plain awkward.  It even makes sentences feel awkward.  Too many syllables, first of all.  Can't we get something like... Pain-cer or Hurts-all-the-time-osis...?  More fitting at least.  Or... You've-never-heard-of-me-but-I'm-gonna-make-your-life-hell-acitis?

What do you think?  Anyone have any ideas for a better name?  Something that's not so clunky to type or doesn't feel as ridiculous to say?  Something I can type in my posts so I don't even need to THINK about fitting "endometriosis" into sentences?  Or something fun... like... "rainbow-killer?" 
;-)

I am taking suggestions.  

Awareness

So today I came across a post on another blog that I think bears re-posting.  Since I am living with endometriosis and I didn't even know that a lot of awareness events existed, I can only guess that most of you didn't know either.  I have learned that March is Endometriosis Awareness Month (along with my birthday!), yellow ribbons symbolize support for Endometriosis sufferers and now this.  In fact, here is the main article on the EndoMarch website.  I am pretty excited that someone else thought to describe endometriosis like I did!  (I did NOT write the following two articles.  If you want to read more from them, please see the cited sources).

"Endometriosis: the cancer-like disease you should know about

Want to make a difference in approximately 200,000,000 lives?
Then please join us for the first ever Worldwide Endo March (Million Women March For Endometriosis), scheduled to occur in dozens of capitals around the world on March 13, 2014.

Though you don’t hear much about it in the news, endometriosis is surprisingly common, with at least 1 in 10 women and girls, usually of reproductive age, affected and suffering with crippling pain in the prime of their lives. Yet, often they receive woefully inadequate medical care, including 6-10 years delay in diagnosis, mainly because endometriosis pain has been accepted as normal for centuries. Pre-teens and teenagers are especially susceptible to misdiagnoses.

You may have heard that endometriosis can destroy the uterus, ovaries, and fallopian tubes. But did you know that it also:

• Shares many features with non-fatal cancers?
• Can metastasize much like cancers essentially anywhere in the body?
• Can potentially cause irreversible damage to essentially any organ or structure, such as: the lungs, liver, heart, eyes, kidneys, brain, bladder, bowel, diaphragm, nerves, and muscles?
  
  Your sister, mother, daughter, or even you may have it, yet be given the wrong diagnosis and therefore the wrong treatment, all of which can potentially lead to irreparable damage, infertility, and a life of unspeakable pain.
  And so, that’s why we’re marching – to turn back the tides of centuries of misinformation – and let the world know that endometriosis is a serious disease with severe medical consequences if left untreated."

(Courtesy of http://www.millionwomenmarch2014.org/)

Perspective

In the course of writing my post yesterday, I decided to google "endometriosis blogs" and see what was out there.  Maybe not the best idea.  There were a bunch of blogs, but they were, for the most part, seriously depressing.  One that stood out to me was actually titled "Endometriosis and Suicidal Thoughts."  I didn't read further.  I can state with certainty that even if I have to deal with chronic pain for the rest of my life, I have no desire to end my life.  

Anyway, these blogs and their titles made me think about my perspective.  I try not to dwell on setbacks or pain because it can become frustrating and overwhelming.  I wonder though if by not sharing the really bad times if I make it harder to understand what I am going through.  I wake up everyday and the first thing I think of is "check your pain level."  I'm probably not going to write like the world is ending or that I have it SOO bad because in my opinion, there is always someone who has it worse than I do. I now refuse to answer the question "rate your pain on a scale of 1-10" because I am terrible at it.  I was in very bad pain, but kept thinking there must be someone out there in worse pain than me, so that precluded me from answering 10 and probably downplayed what I was going through at the very beginning. I've learned how I need to answer that question if I'm in an ER but to me it is way too subjective to be effective.  That doesn't mean my life is easy.  I mean, 3 years ago, my life was pretty awful.  I was so medicated and the pain was so bad that today, I feel almost glad that I'm doing better than that.  But I'm not healed.  There is no cure for endometriosis.  

Introduction

I am new to the concept of blogging.  It has always seemed like posting a journal entry online but I don't know why anyone would want to do that when the point of a journal is privacy.  So I am changing my outlook to a therapeutic one.

I am a 33 year old female, diagnosed with endometriosis almost four years ago.  I have gone to multiple doctors, had multiple surgeries, lived with chronic pain, and faced multiple setbacks.  Before all of this, I did not know what endometriosis was, other than the most basic of definitions: it's when discharge from your uterus lands somewhere in your body where it should not be.  I had no idea what I was in for.  I never knew it could be the cause of such intense pain, I could no longer go about my normal life.  I certainly didn't know the scope of the disease, or the massive impact it would have on my life.  I had no idea that the spectrum was so large.  Most women have some endometriosis and never know about it.  Some have it so severely that it impacts their ability to ever again have a normal life.  I am hoping and working every day with the goal of not having to put myself in the latter category.