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!

A Family Affair

I suppose I could title this Overwhelmed (pt 2).  It has been hard for me to find words this week to share.  Mom is beginning to recover a bit from her last chemo treatment (in my opinion and with fingers crossed).  It is stressful for me.  I think I've been over the reasons enough.  Add on top of that miscommunications and craziness with relatives and the picture ends up looking a little crazy or mean or whatever.  But I'm choosing to look in a different direction.

I feel like I have observed all possible types of communications within a family this week, although I know that is not true.  I have felt even more overwhelmed by what I can only describe as negativity or negative energy.  I also realized that I feel so much less affected by negative energy now.  I simply know I have friends and family who understand and support me or at least are giving it their best shot.  That makes a big difference.  I don't like negativity around my mom while she's dealing with chemo, but I realize I have to take care of myself and make sure I maintain my own schedule and habits that keep me feeling "okay."  

Happy Mothers Day!!

Happy Mothers Day to all the mothers out there!  Whether you are a mother with endometriosis or a mother to someone with endometriosis, you deserve to be celebrated!  And if you are a mother with no relation to endometriosis at all, well Happy Mothers Day to you too, because we all have our tough times and mothers help us through them.

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.

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.

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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.

A Day In the Life of Pain

So as I've said many times before, pain sucks.  A lot.  I've been asked what I do all day or "don't you get bored?" or other questions.  I used to feel insulted by those questions... like the person asking me was saying my life was pointless or that I should be doing more during the day.

I could tell you what I'd LIKE to do during the day but for days when I'm feeling moderate/severe pain, it takes mental effort just to get through the day.  Those days are not fun and I'd say sometimes I think they are pretty pointless.   I would like to do SOOO many other things... I think I could make a list of about 500.  When I have a bad day, my pain is bad enough that I can't even pinpoint where it's stemming from (which was one problem I had when everything started).  I get through my days by NOT thinking about all the other things I could be doing.  I consciously do not think about how much life sucks or "why me?" or whatever.  None of those things help me. 

Lily

(Lily)

Pets.  Throughout my life, I never really had a strong appreciation for pets.  I had a guinea pig when I was young and I would pet a cat  or dog if I was at someone's house but they never invoked a strong emotional response in me.  And, to be honest, dogs often slobber and I never found that endearing. After college I ended up with a cat by pure happenstance.  A friend of mine was trying to give away a kitten and brought him over to my apartment one time, which honestly is cheating because all kittens, puppies, babies are adorable so of course I ended up with my first real pet... a cat who unfortunately, died suddenly at the age of two.  In a very strange confluence of events, I then ended up with a new kitten, already named Lily.  Lily is the cat I've had since before I was sick and she is the one who has opened me up to a whole new bond with animals since I've been sick.  

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/)

Friends

One consequence of everything happening so quickly and the nature of the disease, is that I ended up cutting off a lot of my "social" friends.  The thought of rehashing everything I was going through to everyone I talked to got to be intimidating and at the beginning I didn't know what was going on.  I was just put on a ton of medications that made me feel like I was existing underwater or something.  Also, I had a lot of friends in the volleyball community and talking to them just reminded me of all I had lost so suddenly.

I want to dedicate this post to three friends... HM, MH, CD.  They get me through just by allowing me to talk or to need space and not judge.  All I feel from them is caring and that is so important.  I wish they lived next door, but knowing I could talk to them about what I was going through, or even talk to them about what I wasn't going through when I needed a break.  They never questioned whether I was a drug addict (as one doctor implied), they never thought it was in my head, they never insinuated I was being lazy and if I would just do more, I would feel better. 

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.