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.

Kidney Infection

Yes, I was feeling almost better.  Almost Ok, and then one debacle after another.  The end of the story: I had a kidney infection.  I just finished the last of my course of antibiotics (and I took my probiotics too, those are important!) and I go to my own doctor next week so I will get tested to make sure the infection is gone.  Plus, since I had a kidney stone, and endometriosis around the area of my left kidney, I will also ask her what I can do to encourage kidney health.  So far, I've just been continuing to drink some cranberry juice (well cranberry juice and other juices mixed because straight cranberry juice is not something I enjoy at all, but for the purists out there, I did manage to finish a bottle of the organic straight cranberry juice and it was certainly... Tangy).  

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.  

9/6/2014

* I was reluctant to write a new post until I got FIVE good comments on my previous post HERE... but I had a thought as I was up all night and felt like sharing because I don't know if I cover my everyday life very well.  So while I would still very much like to get some comments (random, creative, far-fetched, whatever!) on my previous post (PLEEAASSSE) here's an expanded post of what I jotted in my pain/endometriosis journal last night:

Sometimes I feel like I spend all day just trying to minimize the pain that may surface at night.  That's an annoying way to spend the day!  I talked with my doctor about it and she confirmed that most people who suffer pain do feel worse at night.  She also talked some about normal cortisol levels and how they are different for pain patients, which made total sense while I was there talking to her, but now I can't remember exactly what the difference is.  (I'll have to Google to refresh myself).  At least I learned that there is a physiological reason for pain being worse at night and the irritating part is that pain at night throws off an entire day, if not more.  I either sleep in too late and then I'm not tired the next night, or I try to wake myself up at a regular time and then I'm just the Walking Tired for the rest of the day.  Also, for me at least, the less sleep I have, the more pain I feel.  It's almost always that inverse relationship.  So it's likely that while I'm up and unable to sleep, because pain that I can deal with during the day can definitely stop me from getting comfortable enough to fall asleep, I also have these thoughts and knowledge in the back of my head and that can't help my subconscious with the sleeping part either.  I do experience nighttime flare-ups of pain.  I can deal if it's a night when I went to the gym and expect it but on random days when I have done nothing of consequence I do get an occasional bout of extreme pain and that is extremely frustrating.  That happened to me this past week and it sucked but I felt improvement the next day and better the day after that, so that's a pretty quick turnaround.  It used to be a flare in my pain level would last a week, so if we are grading on a curve, my grade is improving.

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!

Shaking It Off

I have had a song bouncing around in my head since I heard it, so I thought I'd share.  Taylor Swift's new song, Shake It Off, is not a bad one for that.  It's a positive and fun song and it encourages you to "shake off" the negative things people say or think that are just around.  I can get behind that right now.  Sometimes I need to "shake off" my own thoughts and just enjoy a fun song.  This one has a message that I relate to, so I am sharing.  I am down with shaking off all the pain and stress and tension that has felt like an endless cloud above my head.  (Plus, the music video totally amuses me).

Where I've Been

I know some people are wondering why I haven't been writing more since my mother has been feeling better and things are starting to calm down.  It is simple.  In order to get me feeling better (I was feeling BAD by June/July), my doctor added a prescription that I had taken prior to my surgery.  It has helped my body "calm down" but I have always hated taken it because I feel constantly drowsy and I also feel like it slows down my cognition when taken during the day time.  It has only been very recently that I haven't felt like I need to continue taking it during the day.  Hopefully I can now begin to wean off of this medication and slowly get my energy back.  BUT... (and this is a big but!) I am feeling pretty grateful to be able to worry about my energy level again finally and not feeling the amount of pain I had been constantly feeling.  Honestly, I just have been feeling bad since January and trying to "get by" rather than improve and live and smile.  At one point I realized it had been a long time since I last smiled and that's pretty depressing.  It is a little thing, but I am SO looking forward to going to the gym with much more consistency this month (my one goal for the next month) because I feel great when that is something I can do!  There have been a lot of negative things going on and now the absence of negative things feels pretty positive!  I will take what I can get.  

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).

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.  

6/1/14

Quick and late update:  Nothing exciting today.  I felt generally okay.  Just overly tired again so I am going to focus on my sleeping habits this week.  I tried to stay up a bit last night because I wasn't sure if my mom's fever would get any higher and then I would have had to take her to the ER because apparently fever + chemo patient = Bad.  I didn't hear from her so I finally fell asleep but one night can change everything for me in terms of how I'm feeling.  I have to be careful to not get too run down.  I was going to go to the gym today but I was exhausted.  Also, I think I was feeling allergies for the first time this year.  My eyes are dry and I'm a little congested even though I took Claritin.  So for this week... think sleepy thoughts for me.  I'd like to have five nights in a row of normal sleeping patterns because I know how much better I feel always when I can do that.

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!)

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.