Hope

I know that I have not posted much (or at all) lately.  Sometimes when things are bad physically and emotionally, I just can't bring myself to do anything other than get through one day at a time.  My mother had a bad reaction to her chemo drugs and it was scary for a while.  I was the one with her primarily and trying to keep my emotions in check, keep my pain in check, and do what I could for her was everything I was able to do.  So the blog was not something I was thinking about.  I felt bad emotionally throughout chemo and wanting to be able to do everything I used to do so that I could help my mom through.  I can say I wasn't able to do what I used to do but I did do the very most I was capable of doing.  Emotionally, I think that seeing anyone you love go through that treatment is jut going to be extremely difficult.  I also thought about how hard it must have been for my mom when I was in SOO much pain before surgery and there was nothing she could do to help.  I get that it must have been frustrating and saddening.  I feel pain now but it's a different level.  I am taking fewer medications for pain, so no matter how bad I think I feel on a given day, it is not as bad as it was pre-surgery or else I would still be needing the three other prescriptions to deal with pain.  Mom has started her radiation now though and the difference in her is remarkable!  She is not even recognizable as the same person who had to be hospitalized a month or so ago.  And already her hair is beginning to grow back.  Yay!!

The Adventures of Living With Endometriosis and the Absolutely Pointless Visit to the ER

Gee... I have no idea why people with endometriosis get so frustrated...

I visited the ER on Tuesday when I woke up in the night with very intense pain that either was stemming from, or radiating toward, my lower back so that my back was very painful.  I had already taken the maximum of my pain meds and all of the other night-time medications and it was very intense and apparently not helped by the medications.  When I awoke, I felt a bit better, but in the afternoon/evening I felt the back pain returning, this time higher up in my back and on the right side (in the early morning I would have said pain in the middle of lower back and some  a little higher to the left).  I was also having trouble urinating... Straining just for a trickle when it felt like my bladder was full.  It was not as awful as when I had a kidney stone but the symptoms were new and not getting better so I figured I should get it looked at.  My visit was pointless.  I want to say it was beyond pointless, but I know that literally that doesn't make much sense.  But it was how I felt when I was done.  

Find the Right Doctor For You!

I think as other things have come up in my life, I have forgotten to write about one of the most, if not the most, important things I have learned from having endometriosis.  It is SO important to find the right doctor for you!!  Endometriosis is a real disease and it has real, if invisible, symptoms.  If you know there is something wrong with you, please please please do not let a bad doctor tell you otherwise!  It is OKAY to disagree with a doctor and it is OKAY to get a second opinion and it is OKAY if you simply do not "gel" with a certain doctor.  There is someone out there who will be a part of your support system!  I feel extremely lucky in this one aspect: I love my doctor.  I think she is extremely intelligent, she is open to all types of healing (from surgical to alternative therapies), she is understanding, and very supportive.  I am constantly reassured that she is super smart when I look at articles or blogs and see that I have tried pretty much everything people are writing about.  Also, if I were to ask her a question that she didn't know the answer to, she would simply look it up and tell me she doesn't know but will find out.  

5/31/14

I am a sucker for positive reinforcement.  A few people have commented to me that it helps them when I write about my days, especially the bad ones so they can get a true sense of what endometriosis is like for me.  I am going to TRY to write a little bit about each day so we can all stay connected, in addition to any other posts I may write.  (P.S. - Someone submit my Hierarchy of Needs post to a Psych journal!  I had major college flashback writing that!)

Dear Pain

Dear Pain,

I feel like I've been pretty tolerant of you throughout the past couple years.  I don't yell and scream, or curse your name or ask why you chose me to be your buddy/punching bag.  I mean, I've really been downright cordial.  I don't think it's asking too much for you to treat me in the same manner as I treat you.  I mean, make up your mind!  I don't think that is asking too much.  Which pain would you like to torture me with?  Pick one and stick with it!  

The Pain Equation (or The Mathematics of a Chronic Illness)

I have endometriosis.  Endometriosis is a chronic illness.  A chronic illness adds and subtracts different things to life.  In order to deal with this chronic illness, I realize I have come to look at much of my life as a mathematical equation.  I take a situation (a), subtract the toll it will take on my body (b), and if the answer is a positive number (c), I will attend or interact with that situation.  If the answer is a negative number (d), I'm staying home.  So, (a-b)>0 = c and (a-b)<0 = d.  I just boiled my disease down to some math!  Pay attention, all you students who are preparing for the SATs!

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."  

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...

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.

More Terms and More Understanding Pain Management

This post is a bit of a continuation of yesterday's post, in case you haven't read that yet.  I know before that I mentioned a whether or not a medication is "holding" for me.  I don't know if I've ever explained that...

When I say a medication is "holding," that means that it lasts as long as it is supposed to and is doing what it should do at its peak level.  So for instance, when I use a valium suppository at night, if it "holds," that means I wake up with little-to-no pain in the morning.  That makes it much easier for me to get "ahead" of the pain, keep it under control, and need fewer pain medications throughout the day.  This past week, I felt like the valium was no longer holding because when I woke up, I felt pain immediately.  That means I need to take my pain meds in bed and stay lying down until the pain goes away or I'm going to be dealing with pain all day.