Endo Awareness 2013: Week Four - The Things That Get You Through

It's the final week of Blogging for Endometriosis 2013.  I've enjoyed the chance to contemplate my experiences and share them with the endo community and with people who may be new to this battle (patients, partners, parents, pals....). 

This weeks' focus is on the tips and tools for staying sane and generally being an endo warrior.  There are plenty of material items that can help.  Just a sample:

• Heating pads - Pelvic Pain Solutions offers some microwavable pads shaped for the pelvic region with a belt that allows you to use it while going about your day or simply keeps it from sliding off if you are in bed. They are more natural than most products.  The boyfriend thinks it smells a bit like popcorn.
• Pain patches - A similar idea.  I actually love capsaicin patches for both my back issues and endo....though they do mean it when they warn not to shower too close to wearing it and I'd add don't get sweaty too close to wearing/removing it.
• Bed (a comfy one that feels like you) - Sometimes you just need to lie down (often in the fetal position).  The right pillows and blankets just help you relax.
• Stuffed animals - When I mention that I often hold Teddy MM (really called Teddy "insert fiance's name here") when the pain surges, I find so many women relate.  It helps to hold something really tight, tighter than would be ideal with an actual person.
• Books/TV/DVD - Sometimes you need distraction.  Sometimes it has to be fairly low effort and brainless. 
• Medications - Are they ideal? No.  Would a cure be a million times better? YES!  But pain medication helps women with endo (or anyone with chronic pain) cope.  They allow you to function or simply allow you to sleep.  Medication is a personal choice between a patient and a doctor (though patients shouldn't hesitate to change providers if their views on meds don't match).  Yes, people abuse pain meds.  They also have a purpose.  People can be physically dependent without being addicted....the fact that a patient may have withdrawal issues and may need regular doses does not mean she's an "addict" or an abuser.  I don't think it is a decision that anyone else can judge. 

These items help.  The right people help too.  Those of use who are lucky enough to have supportive partners appreciate them more than we can ever express.  Same for friends and family who listen or offer to help with errands etc. 

There's also the world of Endo Sisters.  You might find one in person, but many of us have found them online.  There are blogs and communities where you can find women who just plain "get it."  This is invaluable and I might go so far as to call finding a community a "must" for newly diagnosed women (I wish there were more aimed at partners of women with endo).  In many of these places, you can ask the most embarrassing, personal questions and receive actual answers and support (look for CLOSED groups on FB....the posts there will not appear on your timeline or in newsfeeds).  The majority of endo sufferers also fight other ailments and you'll find support on those too (meaning no one will chastise you for going off-topic).  Beyond the advice, these women provide motivation.  They show you that there are FIGHTERS out there, BRAVE women who make the most of the life they've been given.  I admire so many of them and I am proud to call them Sisters and friends.  Thank you all for supporting me (a special thanks to one Canadian endo sister whom I've "known" for many years). 

On Not Quite Feeling Like the "Class Reader" and a Review of Jennifer Haigh's News From Heaven

Once upon a time, I had to double-up and post two reviews at a time because I was finishing books fast enough that I was posting book reviews TOO often. Lately, that's not a problem. I'm not sure what it is that's shifted, but I'm finding it very hard to focus during my usual pre-bed reading time. I previously could read for a good two hours a night but recently I often can't even make it through a page. The pain's bad, but it was bad before, and there haven't been any medicine changes. I'm just riding through and hoping that my reading light turns back on as suddenly as it turned off (though MM appreciates the lack of an actual late-night light!). Anyway, I DID manage to finish off a book...

• News from Heaven by Jennifer Haigh

I've started a number of reviews by noting that I don't tend towards short stories.  Still, I have found they abound of late and I picked this one (a review copy from Harper) because I'd enjoyed two of Haigh's novels (Faith and The Condition, I also read Mrs. Kimble but didn't realize immediately that it was the same author).  This is a set of stories all tied to the town of Bakerton, PA, a small town that grew around a single coal mining company).  Some characters reappear, others you can sense in the distance since the stories ranged from the boom days of the 1940s through the town's decline as the coal company shut its operations.  Apparently some of the characters had also appeared in a prior work, Baker Towers.  I hadn't read that and it wasn't any problem, although some reviewers seemed to have really loved it and that made revisiting Bakerton an exciting treat. 

The stories are both character and place driven (which is always a plus for me).  The protagonists vary widely including a teen girl meeting an exciting aunt, a young woman leaving to work as a maid in New York City in the '30s, a life-long resident reflecting on her brother's passing, and a woman experiencing a later-in-life relationship.  Some of the stories simply left me cold and I struggled to get through those.  Other stories had characters that felt vivid and whom I wished I could "visit" for longer.  I enjoyed the concept of watching the town evolve through the years, although I had trouble connecting to some of the latter day tales, despite a strong interest in what happens to industry towns as the industry fades.  The concepts of family and home are key throughout all the stories.   

There were definite highs and lows for me in this one.  I'd rate Broken Star (a woman reflecting on a summer in her teens when a relative returned, bringing a feeling of excitement that contrasts with her rather staid family) and Something Sweet (a portrait of a young schoolteacher in the mid-40s, including a glimpse at a student who has trouble fitting in small-town life) as my favorites.  On the other end of the spectrum, I didn't care for A Place in the Sun (a visit to Las Vegas focused on a man who left Bakerton but never really found his way) or What Remains (other townspeople watch the decline of one of the last members of the family that owned the mines and look towards a new industry that may bring back the struggling town).  Haigh is clearly a gifted writer and her prose can be pitch-perfect at times, but something about it can also drag when the story isn't connecting.  There are moments that are beautifully sad and poignant.  There are other times when I thought I should feel something but instead felt cold and unconnected. 

3.5 stars.  I feel reluctant to round either way...I plan to include this on two sites that favor full stars so I'll put one at 3 and one at 4....

Endo Months Week 3 - Social Impact

The Week 3 topic for the Blogging for Endometeriosis Awareness 2013 campaign is the social impact that endo has had on your life. For the first time in the campaign, I find myself staring at a blank page.   This is not because I don't have stories to share, I'm just not sure where to start. Once again, my thoughts about endo overlap with my thoughts about my back problems and my comments apply to chronic illness in general. 

When I started dating the man I refer to as MM (for "Military Man"), I felt the need to give him a few bits of information about me. These tidbits were more accurately characterized as warnings. I wanted him to know what he was getting in to and give him the chance to bail guilt-free before things got too emotionally involved. Ironically, I wasn't really able to warn him about the back issues that have really dominated the past couple of years. However, the warnings included the fact that I had endo and that the pain was a significant issue in my life. He replied that he grew up with four older sisters, felt pretty adept when it came to "girl issues," and was "not scared yet."  While I was pretty sure this went beyond his sibling-based experience, it still made me smile.  And it wasn't all that long till he faced a flare and he fared well....and I made sure to reiterate the "bail guilt-free, but do it now" message a few times in the early goings (and the middle-goings too when the back became life-altering).

The truth is that this warning was motivated by experience. I had ended a marriage not long before (well, mentally/emotionally ended, the legal process took longer), a relationship of eight years. I don't want to say that endo caused the dissolution. That's far too simple and sounds far too accusatory. Ultimately, it was a matter of incompatability. But the fact that I was not "healthy" added to the mix. It meant I was tired a lot and being social has always been a bit difficult for me since, as a textbook introvert, socializing often takes energy from me rather than adding it to me.  X wanted a more active social life, not only was I not sure I wanted that (don't get me wrong, I like to go out and play, but I'm still mostly a homebody) but also knew that I really didn't have it in me.

I also need a bit more caretaking from my partner than I'd like to admit and that wasn't the relationship X envisioned. He had seen me through the diagnosis and the three endo surgeries (for me, these were relatively simple surgeries), but he hadn't really contemplated how it would impact our lives. In one particularly frank discussion in the days following the decision to end it, X admitted that he'd pondered breaking up when I first fell ill, but he didn't want to be "that guy" and leave a sick partner. I do understand this. However, and this is why I told MM so many details upfront, I ended up wishing he had left then, especially before the "I do"s.   Illness impacts a life in many, many ways. It also impacts relationships, especially romantic partnerships. I do not think less of anyone for saying they aren't equipped for having a chronically ill partner, but I urge anyone to be honest upfront. If you are looking at a relationship with a woman with endo or with a partner with any other chronic illness, you owe it to yourself and your potential partner to be honest and to give it a lot of thought. It is better to say no early than to do so after a long involvement.

MM and I are now engaged. He's been an amazing partner and a wonderful support through some hard moments in the chronic illness journey.  I tout the five hours by my side in the recovery room, bu it is really the day-to-day that is most impressive and most appreciated.  That said, as we look towards the big next step, I hope that one day we get more of the "in health" side of the game!

While I'd like to end on that witty (at least in my mind!) note, I have another thought I want to share. Chronic illness, including endo, can become all-consuming.  It makes it hard to invest the energy in forming new frienships and nurturing old ones.

I have been mulling this a lot recently, regretting that I've let some friendships lapse. I can cite a lack of energy, tied to chronic health ailments, and plenty of other causes.  But I also need to take more ownership.  Even if visiting is tough, I have times when I could write a note or make a call (I am not a phone person).   I have one particular friend in mind, a woman I've known for many years who has done more than her share in our friendship.   She's visited and offered to host and she left more than one message in some of the rougher days.  The connection has fizzled...and it is my fault. I am sorry and I owe this friend a more than just a reference in a blog entry she may not read.

Any relationship with someone who suffers from a chronic illness requires special care and understanding.  "We" only have so much we can handle (see the Spoon Theory for a helpful discussion of this concept) and we need to focus on social relationships that are positive.  I could write plenty of advice on being a friend to or partner of a "sick" person.  However, the "patient" also needs to do her share, especially in the phases that are more about every day management than the days just after a diagnosis or the time around a procedure.  Illness makes social relationships hard and, to use a favorite concept, I think this can be an explanation. But, and perhaps this will be a bit controversial to say in the Endo Month blog campaign, that doesn't always make it an excuse.

Endo Month Week 2 - The Mental Impact

This week's topic for the Blogging for Endometriosis Awareness Campaign is the mental impact that endo has on your life.  Again, I do want to provide a link to my post from last year, although I won't promise that this won't hit some of the same territory. 

As I've pondered this topic (I still push myself to do daily walks and I've "written" countless blog posts during that time, most of which never make it to the blog), I've considered how to distinguish between the mental impact of chronic pain and endo.  I've also considered whether a distinction is possible for me and whether or not it is productive.  I've decided to start with a broad pondering of the mental impact of chronic pain followed by some more specific thoughts on endometriosis.  I can't promise they won't overlap....in fact, I can pretty well promise that they will.

The truth is, endo has always been primarily about pain for me.  And the mental impact of chronic pain is enormous.  The following list is FAR from comprehensive, but provides a glimpse into the impact that chronic pain has had on my mind and my psyche:

• Chronic pain is EXHAUSTING.  I sleep a lot, because of the pain medicines, because my sleep is often interrupted by pain, and because the pain simply wears me out.  This is true even in my current "semi bed-ridden life."  It was also true before the back issues, when endo pain would flare at least a couple times a week even with the hormonal treatments (i.e. continuous birth control).  I learned how to "put on my game face" and get through work and other obligations, but it was exhausting.  By Friday night, I wasn't good for much beyond pizza, wine, and a DVD....which had its own impact on my relationships. 
• Chronic pain is also MENTALLY EXHAUSTING.  The pain pushes everything else out of my head.  I can't concentrate.  Some days, I've been pretty well tongue-tied by pain, especially on the phone (talking on the phone has always required more effort/energy for me).  Struggling to find my words is incredibly frustrating for me.  At it's worst, the pain has been so mentally exhausting that I just end up staring at the ceiling for hours on end....even the simplest of television shows requires more than I have.
• Chronic pain is EMBARRASSING.  I talk about pain.  Probably too much.  Which seems to be in contradiction with this comment.  I talk about it because I need support, because it explains a lot about my behavior (note: explanations are NOT excuses, a topic I've rambled about before), and because I hope to one day make at least one pain sufferer feel less alone.  Still, it is embarrassing to move like an 80 year old when you are in your 30s and to be a prisoner of your body.
• Chronic pain makes for a COMPLICATED BODY/SELF RELATIONSHIP.  I didn't need this to be complicated anymore, having struggled with body image issues (along with eating and exercise issues).  Even putting those issues aside, it is hard to feel truly "at home" in one's body when that body is the source of chronic pain.  I previously rambled along a similar line using the term emBODYment.
• Chronic pain can lead to GUILT.  Pain Shrink says he's spent countless hours counselling pain patients on guilt.  This often includes feeling guilty complaining about or even just being impacted by pain when other people face "more serious" ailments (ex. feeling pain while a relative battles cancer). 
• Chronic pain leads to DOUBT.  Most days, the vast majority in fact, I know my pain is VERY real and that it is indeed often crippling.  Most days, the vast majority in fact, I know I use pain medicine responsibly and as intended.  But doubt is contagious and seeing and hearing it so often from people who cannot see behind the "you look healthy" exterior, wears on you and sometimes you feel it too. 
• Chronic pain STEALS.  It steals my mind.  It steals my relationships when I can't nurture them.  It steals my days when I can't get out of bed.  It steals my joy of reading when I can't focus well enough to get through even a page.  It steals my hope, when it feels like it has been so bad for so long that I can't imagine anything different and stall waking-up because I fear (sometimes "know" is more accurate) the day will only hold more pain.

There are some mental impacts that, for me, are more specific to endometriosis (although they could apply to other diseases of the female body)....

• Endo complicates one's relationship with WOMANHOOD.  This ties back to my comment about pain complicating the relationship with one's body.  I've never felt supremely tied to womanhood, a trait I admire in women who are at home with their bodies in a certain way.  Endo makes this even tougher -- it is a disease of the female body.  It is hard to feel in touch with womanhood while cursing the existence of uterine tissue and hormonal flows (and, per a gyn, you do still have fluctuations even on CBCPs).
• Note: Another blogger made an interesting and important point that I want to add (please respect that I felt this important enough to add but that I do not want to turn this post into a debate about gender and sexuality...let's talk about it sometime, but not now), we talk about endo as a women's disease but saying it is a disease of the female body is more respectful of transpeople.  While I am not correcting my language to show this, I do note that it must be horrific to identify as male and have a disease of the female body.
• Endo means EXPLAINING, a process that adds to the physical exhaustion of pain and illness.  There are still many people who've never heard the word or who just don't know what it means.  No, it is not "just bad cramps"...I don't question that some women have very painful cramps (though I bet some have undiagnosed endo)...but calling endo "bad cramps" ignores the severity of the pain and the other issues that arise with endo.  Yes, it is a real illness.  Yes, it can be debilitating and disabling (it isn't constantly disabling for me, but at times it has been debilitating).  Yes, it can cause infertility, and for many that is the most significant manifestation, but not every endo patient will have fertility issues (it depends on where the tissue growths are located). 
• Endo means living in the world of INVISIBLE ILLNESSES.  It means getting all the "but you don't look sick" comments.  It means no one offering a helping hand at the grocery store.  In my train commuting days, it meant sometimes being in horrific pain but, with no visible disability, there was no reason why anyone would offer me a seat.  I may not have needed it in the same way as someone with a more physical disability (ex. someone using a walker), but somedays it was VERY hard to stay upright and steady when it feels like there's a knife in your lower abdomen.  Asking is hard, even though most people are kind, there's a fear of facing the doubters.  I try to remember my own experience with invisible illness when someone who "looks fine" steps out of a car in a handicapped spot. 
• Endo also means dealing with other symptoms, like HEAVY FLOW (and, as noted above, infertility....which isn't a struggle I've faced so I can't discuss it firsthand, but I know from hearing other women's stories that infertility has a very significant mental impact).  I had very little mental stamina after the first few days of my period because I was so tired, afraid to sleep more than two hours in a row without changing my protection.  This also meant fearing long trips and constantly needing to keep an eye out so I'd know where the restroom was at all times.  The pill, even taken traditionally with the placebo week once a month, helped this a lot. 

There's more.  And I'll think of more as soon as I hit "publish" but editing can be never-ending and, unless I feel something is too big to leave off, I'll just trust that "there's more" is good enough.  Actually, THAT is a big one...a major mental lesson of both endo and chronic pain in general....sometimes you need to accept "good enough" because some days that's your very best.

back update...a surprise and some hope

While it's Endo Awareness Month and I want to keep up with those posts and highlight that health issue, I am overdue in sharing a back update.  Even though I know most of my visitors also read the update on Facebook, I want to ramble a bit here for anyone else who may wonder and for people who may looking for proof they are not alone.  I also think it is good to have a pretty full record of this back journey for both medical and mental reasons.

In September, a year and a month after my spinal fusion surgery, my surgeon took some x-rays.  I'd been in excruciating pain since February (six months post-op).  I'd been in PT and things felt like they were moving in the right direction when they took a very sudden turn and landed me in what I call an "all-but-bedridden" state, even with a good bit of pain meds (which I am sick of...and sick of having to justify....give me a real solution and I will be ecstatic to be free of the meds).  The x-rays showed there was no bone growth (the goal is to grow bone to fuse two vertebrae).  The doc suggested one more type of image and then a revision surgery.  I needed a 2nd opinion before committing.  It took a while but I saw a new doc, considered an expert in the field and in revision work, in late November.  He had a similar reading of the x-ray, noting it is a very rare result (original doc said only 2% fail to grow any bone with the process used).   He did say the surgery was well-done, that it was a result they couldn't really explain. 

While he leaned towards a similar revision surgery answer, he wanted a CAT scan.  There was a long insurance-related delay (frustrating at the time, oddly a good thing in the end) and I had the scan in late January.  I eventually got a note from the new doc with completely unexpected news....the bone was now there.  It took a bit to get him on the phone, but he said it appeared to have grown in between September and January.  He mostly dismissed me from his care, which does make sense since surgery wasn't looking like the right answer.  I was still, however, in as much pain as ever.

I eventually talked to my original surgeon and Dr. Dad.  They agreed that there was bone growth, although they said it was just starting (the other doc suggested it was complete).  The clearest statement given was that I'm "a late bloomer."  Apparently that 2% failure rate is at TWO years, not one.  I was definitely behind though....I looked like a patient might be expected to look at 3-4 months post-op (the films were 17 months post-op). 

My pain has NOT changed.  I tried a day without my supplemental pain meds and the pain got so bad that I can't even remember the day much at all.  I know I was back to finding TV too challenging for me to handle.  I clearly do still need the supplemental meds, even then I'm in bed the VAST majority of the time...it still hurts in bed, but it gets horrid if I do too much.  However, the original doc has held out hope.  He thinks that I will heal, that it is just behind schedule.  He said he expects to see a huge improvement in about a six month time frame.  With the current progress, I definitely should not be looking at surgery.  Until the time passes, I just need to do what I can to manage the pain.  Keep on keepin' on in my own lingo. 

So, there IS hope.  And that is GREAT.  Six months still feels VERY long (though the calls were a couple weeks ago...so maybe 5.5 months??....okay, I know it isn't an exact miracle date and could be a bit sooner or a bit longer).  But I've made it through over a year with this insane level of pain and very little hope.  It has to be easier with a light at the end of the tunnel....

Endometriosis Month: The Physical Side

Once again, the ever-amazing Jamee has organized a Blogging for Endometriosis Month.  I am hoping to join in, but resolve to do what I can and be accepting of that.  Which is, actually, a key lesson for anyone facing a chronic illness.  My life is not the same as before and, the truth of the matter is, it may never be.


As an initial move, perhaps cheating, perhaps energy-saving, I am linking you to my post from last year on endo's physical side.  For more details on endo generally, check out one of a very small number advocacy sites for their explanation (with diagrams) of the condition. One last "pimp my blog to folks already on my blog" note, the is my story for Fight Like a Girl, a group for women fighting life-threatening and/or life-altering conditions.  It is largely focused on how long I waited to speak up about the increasing problems I was having and the eventual endo diagnosis.

Over the past twelve months, the problems related to my back have compounded.  Details are for another post, but the back pain has led to a tough medication regimen including one scheduled pai med and one unscheduled (I can have 0-3, most days I have 2.....I experimented with 0 yesterday and spent today regretting it and back in the stare at the ceiling mode).  Endo has not been at the forefront of my mind, and the medication regime for the back is absolutely also helping control endo-related pain.

BUT, that doesn't mean the endo is gone.  That's the thing about chronic diseases, they linger.  They sit there, at times in the background, ready to pounce at any moment.  Every few days it pops up for notice, despite the fact that I'm on enough pain meds to kill some people.  At one point, I missed two doses of the BCP in a row (I take continuous birth control, no placebo week, it helps keep my hormones steadier and limits the endo symptoms, I do not get periods).  Two tiny missed pills led to days in fetal position (spotting too, for those who care to know....).  The error led to endo pain that "beat" the back pain....and there's rarely a day the back doesn't hit an 8 on the pain scale (1-10. 1 is no pain, 10 is the worst possible).

So, for me, endo is currently a lurker.  It is waiting to bite if my hormones shift (even being around other women long enough confuses my pheromones and can cause spotting or some pain).  It is waiting to bite if (no, let's go with WHEN) I stop using the pain meds for my back.  And I remember all too well the days it took my words and knocked me off my feet and left my crying on the floor.  It comes and goes, and I am pretty certain there will be more fetal position days to come, and days spent educating people who say I look perfectly fine.  That's life with endo. 

(NOTE: I am not having luck with the Blogger Link-Up button, but check out Jamee's blog for her post and link to other bloggers participating in a group effort to spread knowledge about endo and its impact.)