My Hierarchy of Pain Needs

I mentioned yesterday that I had finally broken down and bought some supportive bras for non-gym use.  (I already have heavy duty sports bras that are great for the gym).  I was nervous that I would have to not only increase my cup size, but my band size as well and that would hurt my self-image.  Well, I have been a 36 for as long as I can remember and I am now comfortably a 36/38 while still being a DDD cup.  While I could do without the extra letters on that cup size, I feel good fitting into my own size clothes again.  (Although I cannot wear my medium t-shirts because there is no way they are fitting over my chest).  I felt good enough to actually buy a couple shirts (on sale!) that help me feel like my old self.  I would like to be a little more toned still, but it was really a good feeling to be in normal clothes even while I'm still getting my hormone shot because that is supposed to cause major weight gain.  

5/30/14

Okay, I made it through the night.  And by night, I really mean early morning.  I decided I was just going to give up today and let my body sleep as much as possible, even if it wasn't my normal sleep schedule.  I had pretty bad pain last night, but I slept for almost 12 hours and when I woke up, my body felt like it had rebooted.  My pain level is way down.  My lower back is grumbling a little bit but still, much improved from yesterday.

I know sometimes when I've been not sleeping enough that it can truly mess with my body.  Endometriosis takes a toll on a body and it's important to get enough rest to let your body take care of itself.  I had been feeling like I was going to have to just have a day to sleep but I had been putting it off because I hate those days.  I feel like it is wasted and can throw me off my schedule, but in terms of my body, I have to remember it's okay to do.  

Not A Fun Night

Ugh.  It's about 4:30 AM and I am having pain that just will not quit tonight.  It is frustrating and I know by this point tomorrow will be a pointless day that will just be me being exhausted.  I've had insomnia in the recent past, mostly when I get nervous about Mom's chemo or something to that effect, but tonight it's old school: straight up pain.  I am uncomfortable, feeling that wonderful endometriosis pelvic pain and remembering when this was my life 24/7.  I thought I'd be okay with the valium suppositories, but I guess I'm going to need more than one night to get back on track.  I feel like I've taken enough meds to stop the pain, but I also think I spread them out too much, not realizing how bad it was going to be.  I should have just doubled the dose when I went to bed 6 hours ago.  Sometimes it feels like medication that knocks me out in the middle of the day becomes ineffectual at night and I have never understood that.  Wish me luck with sleep, and be not at all surprised if I'm out of touch tomorrow (or today really).  I know that all the other EndoSisters out there know what it's like to get these days and they just suck.  Plain and simple, tonight sucks.  Pain sucks.  Pain not allowing me to go to sleep sucks.  And at this point my stupid medications not giving me the relief I need also suck.  I hope everyone I know is having a way better night and not reading this because you're curled up asleep in bed.  (Did I mention this sucks?)  I am so much less into positive thinking when I am exhausted.  But these nights happen sometimes.  Ignoring them is ignoring a big part of endometriosis so I'm sharing it with you... the not great, the bad, and the painful.  At this point most of you are closer to waking up than to having fallen asleep so I hope you have wonderful Fridays and I hope I sleep through your work!

5/29/14 Update

My valium suppositories came in the mail today!  (And yes, I totally agree that it's a weird thing to get excited about!)  I am relieved and so will make it through today with the extra pain but hopefully by tomorrow will be back to normal.  If mail had not been stopped for the Memorial Day holiday, the timing would have been perfect and I would not have missed a day.  At least I'll remember to check for next month.  

5/29/14

Not having a great day, so I'm disinclined to write anything, but I realize the bad days are important to document.  I am having worse pelvic pain today but again, I didn't use a valium suppository last night.  I see the correlation, it happened last time I tried to go without for a night during a stressful period.  This time it was not by choice though.  I ordered my prescription but didn't even think for a second about Memorial Day weekend, so that was two days that mail wasn't moving.  So I don't have the valium suppositories but they should arrive any day now.  It takes about a week and I ordered them last week so hopefully they will be here in the next day or so.  It's a bit disheartening, which I think I said last time, that I feel so much worse by not taking one medication.  The pain is so drastically different when I don't use the valium.  And I don't mind that at all, but I would be more comfortable if it took more than just one night to feel so different.  I woke up ready to jump in the shower and then the pain hit and I took my regular pain meds but an hour later I'm not feeling much of a difference so I may need to take more and hope I don't get overly drowsy.  Then maybe I can at least shower.  For right now, I'm just watching tv I don't care about and looking at a bunch of different things online to distract myself.  I don't like bad days but they do remind me of how far I have come that now they are pretty infrequent.  I have discomfort still usually but not like this so I'm trying to just not think about it too much; just do what I have to do to make it through to when the valium is delivered and I'm back on schedule.

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!  

Memorial Day

I feel like Memorial Day is a good time to pause and NOT write about myself.  No matter how I feel today, it is better than anyone who lost his or her life in the midst of war.  This holiday was originally recognized in the United States to remember the fallen soldiers of the Civil War.  It was also originally called Decoration Day as it became tradition to put flowers (traditionally poppies) on the graves of fallen soldiers.  After World War I, other fallen soldiers were included as well, and Memorial Day is a recognized Federal Holiday.  Flags are lowered to half-staff until Noon to remember the fallen soldiers and then raised to full-staff by the living to remember to fight for liberty and justice.  I actually just read today that for a few years now, there is a nationally recognized moment of silence at 3pm today, though I don't know what time zone.  Probably Eastern Standard Time since that is where the Capital is?

Back... in Pain

Nothing really interesting today. I'm posting from my phone because my back seems to be progressively worse. Sitting up to type has become painful. I'm sure I could find some irony here but I'm mostly just annoyed. The pain is pretty bad, so that it now feels like my core is just wrapped in a blanket of pain. I am honestly surprised at how bad it has gotten and how quickly.  Still seems to be from wearing good-quality, right sized bras.  It would be one thing if this is how I was born but it's actually another crappy side-effect of the endometriosis. If I hadn't had to get triple-doses of hormones to control the endometriosis and prevent new endometrial cells from forming, my breasts would likely not have gotten any bigger.  Have I mentioned I hate endometriosis?

In Your Eyes

I am now confident for the love I gave in my previous post to Idina Menzel.  While looking at links for her songs, I learned that she sings "In Your Eyes" while on tour!  I listened to her sing it and it only cemented my love for her.  

If you have any questions, please address them to my college roommate, or probably my sister. :)

Defying Gravity

Sometimes music can be helpful when you're feeling down.   I know people who like to listen to music to match their mood.  I've not been that type of person very often.  If I'm feeling sad, I want music to lift me up and help me feel less sad.  With chronic pain/endometriosis in my life, I have begun to feel more deeply the songs that are empowering or encouraging.  Having a song sung by Idina Menzel never hurts either.  So while I think you should listen to the song to get the full effect, here are some lyrics that stick in my head when I need motivation.  And I don't need motivation to do my physical therapy and get back on the field or the court, sometimes I just need motivation to continue thinking positively.  Or to know that life is okay.  Or to be reminded that I'm through accepting limits because someone says they're so...  And that you won't bring me down... 

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.

Doctor's Visit (May 2014)

I went in for my doctor's appointment today.  Didn't learn anything earth-shattering or life-altering.  Dr. K said that if I am not feeling worse, with everything that is going on, then I am doing well.  She knows I feel discomfort and some bloating.  She reminded me I need to see about an ultrasound or aspiration/biopsy for a node in my right breast.  That showed up on a CT and I'm glad she reminded me because that whole thing must have somehow disappeared from my mind.  I normally follow-up with what I need to but I hadn't even thought about this.  (I could just make an appointment for the same time as my mom and we could hang at the hospital together!)  No change in meds for now, although I am going to go back to the first pharmacy for a month for my Valium suppositories to see if the difference has just been in what I'm doing or in the way the valium was made.  Suppositories are not pills that come out of a bottle, so each pharmacy mixes them up by request, (or basically by prescription) so there may be more of a variance than in just basic pills.  Each order goes to a compounding pharmacy, so I'm going to try the one I did better on for a month now in order to determine if the difference is just me/stress/overdoing it or if it is in the pill.  I will continue to try to do as much as I can without overdoing it.  My back has been killing me since I got home.  

5/18/14

Today was alright, I guess.  A couple relatives came to visit with my Mom and helped, brought food, etc.  That is always appreciated.  So emotionally, it was good to see family and get hugs (and a pillowcase!) and chat and thank them for helping out.  Other than that though, I have not been feeling great today.  Of course, my analytical brain always wants a reason for when I feel different so I search for something that may have triggered me feeling a little worse, like overdoing something, pushing myself too far, stuff like that.  I have begun to wonder if analyzing and looking for a reason is healthy, or if, like the nature of endometriosis, I am looking for causes where the causes are all unknown.  

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!

Author's Note

I've made some changes to the article below since I published it, as well as to the article, The Real Me.  If you want to re-read, you can, but mostly I just clarified a couple of things.  The overall message remains intact.

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.

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...