Introducing The Healthiest Sick Gal You Know

Amid the chaos of moving, I decided to split off this blog into two separate sites.  This one will continue to host book reviews and hopefully get back to some of the more random musings that earn me the title moniker.  A new site, launched today, will deal more specifically with health issues (fitness stuff may bridge the two).  Please check out The Healthiest Sick Gal You Know and the first post in a series talking about the use of medications to manage chronic pain (spoiler: I used some tough meds over the years and even after a grueling withdrawal process, I don't regret it and I think it's important to remember these drugs DO have a legitimate use...don't let the "bad guys" stigmatize those who use pain meds to survive actual physical pain in accordance with their doctor's guidance).

Fighting Back, Part Three: Recovery at Home

This is my third post in a series about my recent back surgery (specifically, a posterior lumbar fusion at L5/S1...a procedure intended to fix instability remaining after a 2011 anterior lumbar fusion).  If you missed them and are curious, here are links to Fighting Back, Part One: Overview of the Surgery and the Pre-Op Period and Fighting Back Part Two: In-Patient Recovery.

The First Days

• When you leave the hospital, they give you a number of instructions.  Some are pretty standard post-op stuff and some are fusion-specific.  The key fusion-specific rules are referred to as "BLT"...no bending, lifting, or twisting.  I had built enough strength to be able to squat instead of bend and I'm pretty "handy" with my toes (e.g. I can pick up a dropped piece of cereal...as a kid, I'd developed the skill of writing with my toes, big letters but legible).  It was definitely little twists that got me in the early days.  It's so natural to swivel a little to grab the shampoo bottle etc.  The rules are largely to prevent unnecessary pain, although it is possible a patient could knock something out of place before things heal and strengthen.
• I left the hospital with the same meds I had when I went in.  This did mean there was quite a bit of pain at first, especially with getting up or shifting position. 
• Most docs limit sitting to 15min increments following a lumbar fusion.  Mine doesn't.  He was clear he wanted me up and out of bed as much as possible.  Riding in a car is frowned upon and we had to stop several times during the drive home (it takes 90-120 min normally...the complexity of my issues demanded an out-of-town expert).
• All docs encourage walking after a fusion surgery.   I did use a walker for the first couple of days at home.  As expected, I tended towards overdoing it.  I'm not going to provide details b/c I know if I read someone else's mileage I'd be tempted to keep up.  Don't be me with this stuff...I have some nasty demons in my head that push me to go further than I should.  
• I was able to use the same brace I had last time.  For the first two weeks, it was on whenever I was out of bed.    
• Two incision-related items:
• One area in which a posterior surgery differs from an anterior approach is, obviously, the location of the incision.  When the incision was on my belly, I could handle my own dressing changes.  Not so much this time.  Honestly, I didn't see what it looked like the first day or two but after that it wasn't as bad as I imagined.  Still, grateful for my husband's helping hand with daily changes.  It was probably about a week to ten days before I stopped covering the wounds.
• As my red hospital bracelet warned, I've reacted badly to both steri-strips (crazy itching) and medical tape (same plus hive-like skin allergy) in the past.  For the main incision, I had a Tegaderm-style bandage.  I also had a small, latex-free band-aid covering the wound from the drain (looked similar to an entry point for an IV).  Despite the attention to detail, I STILL managed to react getting red and itchy precisely where the bandages were adhered (and scratched since I'm apparently no better at resisting an itch than I was when I had chicken pox in preschool); there was even a "space" in the irritation where the gauze was located so it was definitely the bandages. Given that both are intended to be hypo-allergenic, it's pretty impressive how much my body hated them.  I need to talk to my GP about this one...

Initial Post-Op Appointment and the First Month Post-Op

• I saw my surgeon again at the two week mark.  He took x-rays and checked the incision.  He said everything was looking good.  He reiterated his firm belief that "It will work" and again remarked on the fact that my skeleton looks like a child's (not a weight issue, as he said one can't eat one's way to bigger bones)
• Since the 2w appointment, I only use my brace when I leave the house or am walking on the t-mill.  It is there to provide protection in case of a fall or a car accident (or even a sudden stop).  It is a bit embarrassing but I like that it warns people to avoid bumping into me and explains when I'm slow-moving.
• I'm allowed to drive (per the doc, you can drive when you are confident you could react to a kid running out in front of your car), but prefer to stick close to home.  It is still hard to turn my body (and still best avoided) which makes it hard to change lanes and really hard to back out of a parking spot.
• By around the two week mark, I was able to tell that the pain I was having was different from my "normal" pain.  This is REALLY good.  It suggests the pain is tied to recovering from the surgery itself and means they may have "gotten" the cause of my pain.  I've had small spells where I'm nearly pain-free.  It's amazing how much one notices (and appreciates!) a lack of pain after years of unrelenting severe pain.  Most days, I do have a decent level of pain and I need to remind myself that it's expected (more vividly..you're gonna hurt for a few months when someone cuts you open and hammers screws into your spine).  Overall, I'm hopeful.
• I'm still on the same meds.  Yesterday, I saw the clinical pharmacist who helps my GP manage my meds.  Although I was game to start decreasing (in large measure b/c I'm scared of how long it'll take and how rough it might be), she wants to wait till after my two month follow-up to make changes and (hopefully) begin the process of weaning me off them.
• I've had setbacks.  I definitely hurt a lot more during bad weather.  I also have days when I simply feel depleted and that causes a pain spike.  I moved oddly one day and had a return of my old pain for a few days which was terrifying.  It has subsided.

It's about six or seven weeks now.  It's still hard.  Overall, I'd say dealing with these back issues is the hardest thing I've ever done (and I took the bar exam!!).  Recovery has been, and will continue to be, a matter of "two step forward, one step back."  There are good days and bad days and I can't always pinpoint a reason for the bad ones. I need to remind myself often that I can't expect much beyond that and that the bad days part of recovering from major surgery and are not a sign of doom.   Hopefully, it continues to add up to moving forward.  Slow and steady.

Fighting Back, Part Two: In-Patient Recovery

This is the second post dealing with my recent back surgery (posterior lumbar fusion and laminectomy w/ screws and rods, a revision to a prior anterior lumbar fusion w/ cages).  In addition to updating friends/family, I really hope these posts provide some useful insight to others who are undergoing the same or similar surgeries and/or their loved ones.  The words at the top of my blog page are particularly apt here since the format is pretty darn basic: Nothing fancy, just some thoughts.

This part will cover my in-patient recovery period...I had surgery on Wednesday and was in the hospital until Saturday around 1PM. Here's a link to Part One.

These posts are all just my personal experience and recommendations and thoughts should be taken as such.

Day of Surgery & First Night

• I was the second surgery of the day and got delayed a bit because of trouble waking the woman before me  The wait sucked.  It was early evening when I awoke in the recovery room (and got my glasses!).  It was probably 8:30 before I was taken to my room where my husband, mom, and step-dad were waiting.  They told me the doc said all went well (initial info had been passed to them by a nurse, the doc called and spoke to my husband just as I arrived).  The doc confirmed that he'd seen instability, that was a very good thing since it meant they were tackling what was likely the right problem.  He also mentioned it taking a bit of extra effort placing the screws because my skeleton is quite small...I could have told him that dentists sometimes use pediatric tools and my last physical therapist was fascinated by "the smallest patellas (kneecaps) I've seen on an adult."  
• The first night was LONG.  I didn't sleep one wink.  For most of the night, the nurse was very attentive and kind (she got called away but had been planning to come sit and do her charts in my room to keep me company) although the 12h shift and a rough neighboring patient ("Please, Lady X, don't try to get out of bed" "Please, Lady X, keep your gown on"...) wore on her.  Over the night, there were two hiccups....
• A Bedside Alarm --  The bedside alarm seemed to be for non-urgent matters and I learned that bending my arm too sharply triggered it b/c of the IV placement.  It went off, as it had before, around 5AM.  I knew how to use my call button but didn't press it since I presumed that the alarm would trigger some sort of alert...I figured if no one came there was a mighty good reason why (i.e. Lady X).   Eventually, after a good thirty minutes of an unrelenting alarm noise causing a massive headache on top of everything else, I burst into tears and started calling for someone to help and just make it stop.  A volunteer eventually heard me.  It turns out that alert only sounded in my room and my mostly closed door prevented the staff from hearing it. The nurse was less than kind when she explained this, insisting she'd showed me the call button, which she simply reiterated that when I said I didn't think I needed to use it when the alarm was going off since I presumed it alerted the staff.  She said she didn't want to hear a volunteer found me bawling again...probably well-intentioned but came off sounding like she felt criticized.  Lesson: Press the button, even if you think you don't need to!
• TMI Alert!  Catheter Issue -- Yes, this is TMI, but maybe it'll help someone to share it.....For hours, I mentioned that I felt like I needed to use the bathroom but I "knew" I had a catheter so that shouldn't have been a true issue.  Eventually the nurse did go in search of a bladder scanner that wasn't in its usual location but it was low-priority and she got diverted.  I'm not sure what triggered the eventual response, but suddenly an aide rushed in around 4AM.  Long story short: The catheter wasn't ideally placed and there had been ZEROl output from it all night (which should have told them something!!)...the adjustment led to more than an entire container's worth of output!  Lesson: If you know something is amiss, keep mentioning it even if it feels "silly"...I had mentioned it, but I think I almost dismissed my own complaint.

The Rest of the In-Patient Stay (Days One to Three of Recovery)

• Honestly, I had a good deal of pain throughout the in-patient period and pretty poor pain control, largely b/c of how long I'd been on pain meds and my high tolerance. I also found it incredibly hard to push myself up from lying down and/or sitting.  I worried about doing it without bedrails but found I really did make fast enough progress that I could handle it by the time I was discharged/
• Each day included two visits from physical therapy.  The first time, I just stood and walked across my room and across the hall.  Eventually, we did trips down a couple of hallways and practiced the single step I'd need to take up my stoop at home to get in the door.  I had a walker and usually both a physical therapist and an aide.  
• I also saw Occupational Therapy twice.  They are focused on more general life skills from putting on socks to getting in the shower to using a grabber tool.  Honestly, I didn't need the help since I'd heard much of it after the previous surgery.
• While it has moved into more normal ranges in recent years, I've often had fairly low blood pressure.  I still have it sometimes but I used to feel like the world closed in on me when I stood up.  Although I had high BP before the surgery, it got pretty low in the following days especially on day two.  I had to laugh when an aide dismissed a 90/55 reading and said it was probably an error.  She retook it and got 90/51.  Not surprisingly, I felt like just keeping my eyes open was hard work and even slept through a visit from my husband (he would text me in the AM and come by for a couple hours in the early PM and again post-dinner).
• The hospital had a "Room Service Menu" longer than many restaurants.  I wasn't really hungry, but seeing it by my bed the whole time incited some intense cravings.  Kinda sucked since I was on "clear liquids"until lunch on the last day when I was given a nod to move up to the "Light" listings which meant I got crackers and dry toast!  While I never placed an "order," they still delivered broth every meal...which I never touched but the thought of broth still makes me queasy!!  I mostly had popsicles and water ice.  Lesson 1: Don't look at the menu if you can't have it.  Lesson 2: The meal cart girl had extras of the pops/ices and had better flavors than I got from the nurses!
• By the end of the stay, when they finally unhooked everything (actually, they gradually unhooked certain pumps, my wound drain, etc.) I had a song from Pinocchio in my head: I Got No Strings.  It felt incredibly freeing not to need someone to hold up/move the IV etc and not to have to either have them leave the bathroom door ajar to accommodate the equipment!
• I was terrified to go home.  I wanted home, but I feared I couldn't handle it esp on morning 2 when the doc said I'd probably leave the next day.  I was fine  It wasn't easy (see Part Three!), but I could do it.. Reminder: The docs and nurses really do know what they're talking about when they plan for discharge.

Click for Fighting Back, Part Three: Recovery at Home

Fighting Back, Part One: Overview of the Surgery and the Pre-Op Period

I intended to write, both on the blog and for myself, during my recovery downtime but that hasn't materialized.  Part of the issue is that sitting is hard on the back and so I'm in bed much of the time and only using my tablet instead of my laptop -- I'm a slow enough typer normally, let alone on a smaller touchscreen!  Still, I want to have more of a record of this recovery and also want to share it for anyone who might be looking for firsthand accounts of spinal fusion surgeries...so, I'll compromise with a throwback to my beloved bulletpoint style posts that may take a bit to complete but hopefully will cover the surgery and the early weeks of the recovery.

Since a single post was becoming unwieldy, I'm going to split this up a bit.  I'll add in links to the other parts once they are complete but here's a bit of rambling on the procedure and the pre-op timeframe...

Note: These posts are all just my personal experience and recommendations and thoughts should be taken as such.

The Procedure (copying myself from Facebook)

• This will make more sense in combination with the links below (obviously generalized so may include irrelevant pieces or miss important ones) -- My surgeon did a posterior (i.e. from the back) laminectomy with fusion (much bigger endeavor than w/o), the term "PLIF" is often used for Posterior Lumbar Interbody Fusion.  The doc used pedicle screws and rods plus a bone graft of “locally harvested” material taken from the earlier in the surgery.  It was complicated since I had a previous surgery at the same level from the front (anterior, ALIF) using two cages plus bone morphogenetic protein (supposed to encourage bone growth).  We believe the area never fully fused leaving instability that caused pain.  The underlying reason is basically unknown…they’ve referenced “degenerative disc disease” (read: bone broke down and no one knows why) and also “failed back surgery syndrome” which pretty much means what it says! 
• Here's a short animated video shows a procedure much like mine; 
• This page has lots of words but more info than most;
• This page provides an overview of fusion (as one person said in an online discussion about a procedure akin to mine “[t]hink of it as fusion being the primary surgery with laminectomy just a part of the process”;
• One more link with a bit of detail on the screws 

Pre-Op

• Background: Many years ago, I waited much too long to speak up about pelvic pain..as in I was put in a cab and dispatched to the doc after passing out at work.  By then the pain was bad and no longer confined itself to my period and when I finally did seek help it felt pretty urgent.  Despite both the doc and I "knowing" it was endo, they ran through tests for a number of other possibilities first since endo is a surgical diagnosis.  Finally, we were ready for what I "knew" was the procedure that could diagnose and even help treat the pain.  The date was set...until I showed up to the pre-op with a "little" congestion and found out it was walking pneumonia!  That meant a heart-wrenching delay and means I freak out a bit about pre-op issues.  
• Before this surgery, I needed a clearance from my general practitioner and a bunch of tests.  I was worried but I "passed."  
• The week before surgery I felt kind of weak and had cold symptoms.  It isn't the right response, but I didn't say a word and figured I was fine as long as I didn't have congestion or a fever on the big day.  As a kid I'd get strep throat without the slightest temp rise and my norm is closer to 97.6, a degree below average...still I felt like I might have one about 5 days out (I refused to check).  So I held my breath when the nurse took my temp in pre-op and my heart stopped when she voiced the read-out "One hundred even."  Thankfully, and perhaps b/c they didn't know it was more equivalent to a 101 in someone else, they still allowed me to go ahead.
• One of the many reasons I like my surgeon is that when he stopped by my pre-op bed (side note: it was in a little bay with a real door and this odd toilet that folded into the wall!) he gave me a hug and told me he'd pray for me.  It seems standard for the surgeon to check-in, but this truly made me feel like he cared.  Despite not being a religious person, I truly do appreciate prayers and I also appreciate any sort of thoughts/energy/wishes that people put out there.  I will admit, as another aside, I told people that for the day of the prayers/wishes/vibes/energy should all be directed towards the doc to guide his hands...my "part" would come after.
• I'd had surgeries before and knew I couldn't wear my contacts.  The staff seemed a bit befuddled by me refusing to just send my glasses with my husband.  I knew I'd be in recovery for an hour or so before I saw my family when I was moved to a room.  I couldn't imagine the added anxiety that not being able to see would bring.  I pushed and, despite insisting patients couldn't take anything with them, they eventually agreed to have my glasses travel alongside me.  Absolutely worth the push (though truly surprised that I seemed to be the only person who made the request)!

Click for Fighting Back, Part Two: In-Patient Recovery.

on bodies and answers, on body love and the flip-side of hope

This is an introductory post...a topic I've covered it has evolved (or I have).  I want to write a much more substantial post in the future.  But I also want to get some of this "on paper" ("on screen"???) ...and out of my head.


Element One:
I believe that learning to love and accept (but mostly love) our bodies is a crucial component of finding joy and becoming an adult...esp for those with food and body issues in their past.  Learning, truly learning, to love your body is one step towards wisdom.  For me, this means appreciating my body for all it can do.  And it COULD do crazy things (I'll talk about my half marathon till my final day).   But now..

How can I love a body that only seems intent on making me suffer?  That threw (visible) hives at an already awkward junior high student who had to bring a whole box of tissues to school b/c she went through that many?  Then the endo. Then the back.  Not to mention the low functioning immune system.  How do I love this??

ASIDE - Of course, people have it MUCH worse.  But that doesn't actually take away the problem.  I'm good enough at guilt so please don't leave me with more (i.e How can you complain about back pain when people are dying?)

Element Two:
I don't tend to   get excited about things, which is weird and a bit sad.  But I also don't tend to get anxious.  So the terror-level fear I'm feeling about the surgery in May is unusual for me.  I have thought I needed revision surgery for years now.  It has been where I thought we'd end up, even as i plodded through non-surgical options.  I've been waiting; now I am formally waiting since it is formally happening.  This is it.  The Answer is coming in lat May

But....

What if....

it isn't?

What if this doesn't work?  What if my pain is still there?  Or worse?

Synthesis:
I've had trouble with food lately.  Mini-binges (see:me on BED, eating disorder group on BED, same group on formal inclusion in diagnostic manual).  And with working out, I've ricocheted from feeling unable to move because i can't get motivated to feeling unable to move because i way overdid it.

It took time till I connected the dots.

I know I need to stay positive.  I DO believe it will work.  But the "whatifs" (I imagine scrawny little furballs) are whisperring in my ears

Rambling: Where I'm At On My Medical Journey. Preparing for Revision Surgery on My Lower Back

Three and a half years out from my first journey through back surgery and I find myself preparing to return to the OR.  I'd seemed to be on track for about six months after the fusion surgery that was intended to fix severe pain in my lower back.  The doc had confirmed that the disc at L5/S1 was "mush" and the likely source of my pain so I was hopeful that once I got through the long recovery I'd be returned to a normal life.  Needless to say, that didn't happen.

I've chronicled some of the big moments in my journey and I won't repeat them all here.  When the pain returned full force, I sought help from several doctors and tried a wide range of non-surgical interventions (injections, nerve ablation, acupuncture, etc).  None worked.  In the fall, I underwent an invasive and difficult test that confirmed my pain (disabling and hard to manage even with substantial medication) stemmed from the original operation site.  The verdict is pseudoarthrosis, a fancy way of saying the fusion did not take completely and I'm unstable which is the presumed cause of my pain.  There's a particular cruelty to the knowledge that it all traces back to something we thought we'd fixed back in August 2011.

I'm scheduled for revision surgery in late May, although I'm on the list to be called in the event a spot opens up earlier.  My doc, a different one from the first operation despite the fact that all the medical folks say it was not an issue of poor technique (several have even praised the first doc, despite the bad luck I've had with my bone not fusing fully), will go in through my back and place hardware that should steady my spine and hopefully eliminate or greatly reduce my pain.  The surgery should be a bit easier than the first, but it's still a major undertaking and I'm expected to spend 2-3 days in the hospital.  Despite not being able to work, I asked when people usually return to desk work to get a sense of the recovery (the first time the doc wouldn't talk about it till the 2 month mark) and it sounds like 3-4 weeks is the typical timeframe.  They were a bit thrown by me asking about returning to aquacise but it sounds like a 2-3 month period of being sidelined there.

I swear that my pain kicked up a notch since we scheduled the surgery a couple weeks back.  While I've thankfully not had to place my pain on a 1-10 scale for a bit, even medicated I'd rarely had a day average less than a 7.  This week, it's closer to an 8.5 or 9.  I soldier through, I complain a good bit but I try to live as much as I can and resist the urge to hide in bed....although sometimes that would be better for me.  I can hide it when I want to, although I am pretty honest with those I see regularly.  I still walk daily...I'm stubborn and although it can mean a nasty bit of rebound pain when the endorphins wear off, I think it is important to keep my body in the best shape possible.  And I'm vain.

Pain is a difficult beast.  It is a physical and a mental matter; exhausting is an understatement.  Until you've lived with chronic pain, you can't fully understand it.  My Military Man husband does his best to help and I know it is frustrating to watch helplessly when I cry (at this point, I think I've worked my tear ducts to their limit...I call it crying sometimes even when my eyes are dry).  I am so thankful for the patience and love of my family and friends, esp those on the "front lines".  I try to remember that I look "normal" and not get mad at the little moments, like when no one helps me lift a 12 pack of sodas into my cart and people seem inpatient when I'm slow at such tasks (I should ask for help, I don't).  The invisibility of pain is one of its biggest obstacles and I could write for days on the subject having faced the endometriosis demon in addition to the back issues.  Likewise frustrating is the tendency of society to assume that pain is all equal -- if Motrin helps and if you can recall what it is like to not feel pain, it is a different beast from chronic severe pain.

That's my ramble for the moment and an update for anyone who might be curious.  As usual, it took all I have right now to write this and I can't imagine a solid re-read so please forgive my grammar and any errors.

One more note -- If you've found my little corner of the Internet because you are on a similar journey or watching a loved one face a similar beast, just know you aren't alone.  Pain is a very individualized demon, but many emotions are shared from the feeling that you can't possibly face another day to not knowing what else to do but take it one breath at a time.  Know that you know your body best, never let a doctor dispute that.  Remember that accomplishments are relative...if all you manage one day is getting the credit card bill in the mail box, that may be a feat comparable to putting in an extra long work day and finishing a major project.  That's one of those things that is tough to explain to a non-patient and it often feels like no one understands, but you aren't alone.  Know that there are others who know how much it takes to just put one foot in front of the other.  It's a journey I wouldn't wish on anyone, but I still find it helps to know it isn't just me...

on the new housemate

We got a cat. (Note: By far not the most important matter mentioned  just the only one currently mewing at my feet)

But, of course, that means little to some of you since, while I know my biggest group of readers follow me from Facebook I must allow myself the deception that someone reading this sought it out otherwise. So I'll add detail.

MM and I are quiet different.  Career Military/Pacifist.  Graduated for-profit college in early 30s/Graduated at 21 from a top liberal arts school.and didn't stop there.  Conservative/Liberal.  There are more, but you get the point.  One thing we do have in common, HORRID allergies, especially to all furry four-legged sorts.  He is also the only other person I've encountered who will shout dog when one appears on tv in case the companions missed it.  And perhaps we both really want to pet the tv in hopes it will somehow transmit to the actual dog.

But we've long said we'd never venture beyond the aquarium dwellers: fish and two aquatic frogs.

And...

There was an "AND."  A big "AND."

Well, to take the "just say it" approach, MM's Mom died.  There's not much one can add here; there never really is.  She'd been sick for over a decade, with on and off hospital stays so it both was unexpected and a surprise.  But she'd certainly not expected this turn when she brought a new (adult) cat home at the start of the summer.  Well, the four sisters declined (dogs in home, just plain uninterested) and, while I was made sure he considered the health aspects, my MM's a sentimental guy.  So we got a cat.

Day ONE sucked, but the generic Claritin D has helped (buy stock!).

And, while I tend to be a dog person, this is a lap cat.  She talks up a storm, She love to eat, but would pick a day without food over a day without companionship.

So, we have cat.  And we;re both suitably drugged.  And both in love,

ramblin' on

I keep on intending to write, but I'm fining myself a bit stressed of late and with very little extra energy. Plus, I have so much to catch up on.  Which all clearly indicates a need for an update post in the bullet-point style I love so dearly:

• On April 27, I became Mrs. Military Man.  I really intend to write a full post on the day.  I was a total girly teary mess during the ceremony but made it through a part I'd long promised myself would happen -- we both read some words we'd prepared for the other (not vows, I like matching vows, but more of a message to the other person).  I'm totally taking the suggestion to include both writings in the eventual album and tempted to post my own ramblings.  Those exchanges included, I think it turned out to be a lovely day.  Our week in Florida was a lovely, relaxing escape as well!
• I wanted to throw a party the day I finished my Thank You cards!
• I also have been seeing a new set of docs and had a radiofrequency ablation.  I tried to believe it would work and that they'd zap away the nerves that were causing my pain.  Sadly, enough time has passed that I have to conclude it might have gotten a bit of the issue, but no more than 5-10% of the problem.  My follow-up was frustrating...at one point he said "but you're not there yet" which upset me since he may be new to my case, but my case (i.e. my pain) is not new.  Anyway, for now he's trying some topical medicines.  He did mention maybe looking at a spinal cord simulator but I think he feels like they are going to improve considerably in a year or two. 
• I've progressed well through the grieving process re my father, at least per Pain Shrink.  For brides who've had a similar loss, especially an unexpected one fairly close to the event, I highly recommend picking a day around a week ahead of time to just straight out mope.  It helped to assign a day of grief...not that grieving can be truly confined to a day, but I took one day to just be sad and it really helped.  Of course there were hard moments (I am lucky to have a step-father who served as my escort...I debated walking alone, even before the loss, given where I am in life but it would have been hard), but I think it was a lot better than it could have been.  There are some Dad-related issues that I'm having trouble with, but I feel somewhat at peace with my father in general and that helps across the board.  I still have an impulse to seek out his input on medical things and to send him random notes.
• Perhaps you recall my new-found fondness for aquaucise (and my classmates).  Well, I'm still going but now find myself on the other side of the class.  The Y's aquatic director asked me to take over teaching for the summer.  I'm loving it and getting great reviews (including from at least one woman who'd stay quiet if she wasn't pleased, a contrast to some who I think might just want me to feel good).  Not sure if they'll have me give the class back in the fall or stay on....particularly since I get the impression that most of the class prefers me to the most recent instructor.
• It may take a moment to see, but these are our recent visitors.  The first pic is the day they hatched.  In the second, one baby had already "fledged" (left the nest) and I caught the second as he was getting ready.  He sat and watched me for a bit and then I startled him and he took the big leap.  I think it is pretty cool to have the pics the day they hatched and the day (the moment!!) one of them left the nest.

Endometriosis Awareness Month 2014

March is Endometriosis Awareness Month.

If you know me, then you know at least one person who deals with this chronic ailment...one who only chased it down after passing out from the pain and after the pain became month-long (myth 1 - endo only hurts when a woman has her period).  It was a pain that took my breath away and eventually, at night when it wore me out, I'd hope for it to get a smidge worse so that my mind would float away (myth 2 - it's just cramps, all she needs is a couple midol).

I was "lucky"....my docs heard me and although they did a ton of other tests first (myth 3 - you can diagnose endo in an office exam....it takes surgery, although there's a possible improvement on the horizon that is being tried by a few very specialized docs), they had endo in their minds earl due to a thorough patient history and were willing to do the laproscopic surgery and get a diagnosis.  It's mostly managed.which is impressive since it is getting through all my back pain meds too (no idea how the endo would be without the constant pain mgmt routine for the back)...but there are still bad, very bad, days (myth 4 - there's a cure).

Endo can be disabling.  It can take away MUCH more than a woman's sex life, though that is often the first area to suffer (and is a big deal itself).  In addition to the patients, it impacts the partners, children (myth 5 - all women with endo are infertile.  truth is that it is a leading cause of infertility but most women with endo can have a child, a fact that does not at all take away from the very intense pain of infertility), families, friends, bosses, colleagues, and the whole society b/c it makes SO many women less than they could be if they were healthy.

(myth 6 - there's one 'endo experience') Every struggle w/ endo is different.  Some involve pain, sometimes debilitating pain.  Some are painless but become a focal point when fertility issues bring it out.  Some women's insides are covered with growths, some have few (myth 7 - the amount of endo is tied to the amount of pain.  truth is you can have insane pain with a small growth if it hits the right nerves).  Endo is individual.

Endo needs AWARENESS.  Endo needs ADVOCATES of both genders.  Endo needs better TREATMENTS.  Endo needs a CURE.

Other posts focused on endo include:

• 3/5/12: Endo Awareness Month: Physical Side (and more on my story) 
• 3/12/12: Endo Awareness Month: Mental Impact;   
• 3/19/12: Endo Awareness Week 3 -- Fertility; 
• 3/26/12: Endo Month Week Four -- Coping; 
• 3/3/13: Endometriosis Month: The Physical Side
• 3/11/13: Endo Month Week 2 - The Mental Impact;  
• 3/18/23: Endo Months Week 3 - Social Impact
• 3/25/13: Endo Awareness 2013: Week Four - The Things That Get You Through

And sending a big hug to Jamee (prior blogging group organizer) who has been battling so many health demons of late.  Take care of yourself, get some answers, and feel better!

on wholeness and invisibility -- more rambles on life with pain

I spend a lot of time thinking about the impact of chronic pain, how it touches every facet of life.  Heck, that recurrent thought is itself one of the side effects...I see it impacting my life and, although some might counsel doing so, just ignoring those impacts is impossible.  If you dig into the online pain community, you'll find many references to Spoonies.  The Spoon Theory is one woman's attempt to explain chronic illness to a healthy person, with a focus on the pure exhaustion.  It's worth a glance if you've never come upon it.

I also think about how these constant impacts can occur with very few outward signs, particularly with respect to strangers we might see at the grocery store or crossing the street.  I've said this before, but I look like a fit 30-something woman so no one expects me to move like an unhealthy 80 year-old (I know women near 80 who move a LOT better than i do!).  Aside from people not understanding why I'm fighting to get the soda in my cart at the store and why I need the handrail-side of the stairs, there is no way to explain, in the moment, how the pain (and meds) invade my brain and steal my words so I might grasp for the word "penny" when digging for one I know I have in my wallet.  Ironically, I can't very well explain the loss of words when my words are lost...long-term companions will get an explanation eventually, but the cashier I'm standing before and the angry guy behind me just see a fool.  And, to be a bit prideful, this is especially hard b/c I'm generally a smart cookie, especially when it comes to communicating.  It is common for tots to either walk or talk early and then be a bit later with the other.  I talked early and quickly got the hang of combining words....I think I walked even later (and less) because I could just SAY what I needed instead of getting it.  Not being able to "say" is frustrating/crushing/humiliating.  And that' just a single example....it goes on and on...

 

There are days I want to wear a big flashing neon light that says "Severe pain on-board" in the hopes it will explain some of my actions and, frankly, get me a little extra help (I could write pages about help offers, non-offers, the visibility of the issue at said time, etc.).  Yet, there are other days when I want nothing more than to look "normal".  (likely a grammar error, but I stand by it...grammar is about clarity and the outside period advances clarity).   The newest challenge for the latter days is that I hit the length of disability needed to be Medicare eligible which feels so awkward, even if the only people who I need to reveal it to (ummm, besides the Internet) are at doc offices and pharmacies and many of those people know that Medicare is for more than just the elderly.  Still, this has hit hard; the need to say Medicare and have it mean me is almost outside of my comprehension. 

Anyway, Sunday night ramble done.  Reply if you wish.  I may soon solicit input for a future post and hope I'd be able to get enough.....prob will have to turn to my FB to get enough....

Hope you all have a lovely week.  Thank you for visiting....there's been an atrocious pain spike for a few days and it does help to know some folks out there are watching (and maybe learning) from my rambles.  

Speculating on the world and our roles therein; Reviews of The Department of Speculation (Offill) and What I Had Before I Had You (Cornwell)

This blog has always included chronic illness as one of its theme, a natural result when it is also the overwhelming them of your life much of the time.  Two days after saying no to the flu shot, I woke up, you guessed it, with the flu.  I take comfort in knowing it wouldn't have helped if I got the shot that day (and wont mention the prior offer to give a flu shot).  Anyway, I think I got on the upswing from the low point and then got knocked out by anther bug....and another. Not flu now, not well now either.  I seem to only feel well after I take my Ambien but before I am actually asleep....it relaxes my twisty belly, crampy endo, ouchy sinuses, and tighter-than-tight-since-I-can't-do-my walks-legs/back.  May need some med discussions...we recently adjusted two medicines and if the way I feel is due to the change and not likely to abate, then it needs to be changed again b/c this is not tenable.  Reason for the ramble: to explain falling behind once again.

• The Department of Speculation  by Jenny Offill

This a short book and can be a short read, but there's an awful lot of the ebbs and flows of modern life between its covers.  The premise, the couple once hit on the idea of writing letters to each other marked :"Department of Speculation," a phrase about the uncertainties in the path two separate people when they opt to marry and journey together.  The woman is the protagonist and we mostly she her view.  We watch as she falls in love, becomes a (sometime uncertain) mother, battles bedbugs, and deal with a painful blow to the relationship at the heart of her assembled life. 

There's a lot there. And yet there's a lot not there.  We, the readers, learn bits and pieces of many topics from history to philosophy with some astronomy thrown in.  We don't go to deep into the specific couple, heck, we don't give them names, but we see the decisions they make in order to preserve or change their circumstances, especially in the area of marital fidelity. 

I enjoyed it.  I wanted to enjoy it more.  I wasn't sure if I wanted to root for ANY outcome, which can make a reader less invested in the journey.  I enjoyed the little data bits and how they connected up (esp one focused on child age and paternal infidelity).  3.5 or 4 stars.  It might actually improve with a second read...you spend some parts trying to catch up with what it happening and the knowledge could allow you to enjoy the ride more.

An Advance copy was provided by Knopf but all opinions are my own.

• What I Had Before I Had You by Sarah Cornwell

This novel take place in two primary eras, a pivotal summer for teenage Olivia, and a close-to-present-day time when Olivia and her own children pass through her childhood town, a part of the process of ending a marriage.

Young Olivia knows her mom is different.  She tells fortunes, reads palms, and speaks to her "twins." Olivia has been told her would-be-older-sisters died in infancy.  There is a lot of turmoil in the home that is hard to grasp until it becomes clear that mom is severely bipolar and there are early signs in Olivia as well.  This is a summer of rebellion and pulling away as Olivia also tries to figure out who she is, and who she could be apart from her mom.

In the latter year sections (woven throughout), Olivia's marriage is fading.  Her daughter Chloe appears to be fading a bit too as nine year ol Daniel is showing signs of a very significant, early onset, bipolar disorder.  When the trio stops for a breather, Daniel goes missing.  Present day Carrie retraces some of the important places of her youth and revisits an old friend as she, along with police, search for the boy.

Don't just call this a novel about bipolarism.  It is that, and notable for looking at three different manifestations of a broadly applied label, but it is also about family, both those of blood and those of other bonds. 

I read this Harper early release in exchange for my unbiased review.  It was a good book and I enjoyed most of it, but I'm not sure that it is going to be one I seek out to read again and I would likely struggle to describe the novel six months from now if only given the book's title.  3.5 stars, rounding down b/c it just didn't resonate with me.  Could be good for the right book club or an airplane ride, but can't picture shoving it into someone's hands as a must read.

a rough few weeks...a messy allergic reaction and a tough treatment...

(warning: another ramble about health demons...I'd write something more interesting, but this is what I've got to share....)

Sometimes it's almost amusing....almost....

When I was 13, I started getting hives.  I spent a couple years in and out of doctor's offices, even making it to some pretty special specialists with "hive clinics" and "hive calendars" and the like.  At first, the hives were large welts that pretty much covered my body.  The ultimate conclusion was that they had no conclusions.  Most likely, it was some form of auto-immune reaction.  Which I pretty much read as meaning I'm allergic to myself. 

Over the years, they've calmed a lot, they are nowhere near the horror they were at some points.  But they are always lurking and I doubt a week goes by when I don't have some sort pop-up, particularly on the backs of my knees and other heat-prone areas.  I do avoid a number of classes of medications because they can aggravate them...while the hives come from nowhere, they can also come from "somewhere"...

All this is a long way of saying that I'm used to my skin acting up.  So when my back would get a bit irritated from the capsacin patches, I just kind of ignored it.  I weighed the demons and the patches helped more than they hurt.  Until recently. 

It was probably the "sticky" ingredients in one of the generic patches that was the culprit.  I've had trouble with the steri-strips and medical tape in the past.  The region on my back stayed aggravated for a few weeks and, despite laying off using any patches and dosing with some allergy meds, it got worse.  And it grew.  It took longer than it should have, but I finally caved and saw the doctor.  By that point my chest and arms were also troublesome, which is putting it lightly, becoming a systemic reaction rather than a localized issue.  It didn't help that I kept caving and scratching...so the rash was joined with areas that were almost raw. 

I suspected going in that they'd do a down & dirty course of steroids to knock my body into compliance.  I'd done the oral steroid thing before and dealt with a bit of water-retention and such, but this time it has been truly horrid.  The first few days I was pretty well incapacitated by nausea and a migraine.  I'm still feeling a bit flu-like and need to chase the meds with other meds to control all the side effects.  The steroids are doing the job, there are traces but the reaction has definitely calmed.  Still, it has been a pretty rough time and I will be thrilled when they are gone. 

I'd liked the capsacin patches.  They helped distract me from the back pain, even if they didn't truly treat it, and I liked the non-pill option.  I'm not risking even the brands that I'd been okay using in the past...it is NOT worth the risk and I suspect that I'd be more reactive in the future. 

My mom remarks that there was a time when she thought the hives would be the hardest thing I'd face physically.  Then came the endo.  Then came the back.  Sometimes I think I HAVE to be done....and sometimes I'm terrified what my body has left to throw....

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). 

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.)

Taking the Lead

I confess...I don't "do" resolutions.  I've grumbled on that before and feel no need to elaborate,  This isn't a true resolution, but it is a goal.  It is a goal I'd love to meet in 2013 but that might take a bit longer.  So, what is this goal (or maybe "hope" is a better word)?

Initially I had a long-winded ramble here about the past month and a half, but it isn't necessary.  In truth, it has been a stretch of "busy for me" weeks that might seem normal to someone else.  Some of the days might even qualify as simple, with the major tasks being a trip to the store and a couple hours of cookie baking.  I've lived a normal life, but not the life I'm currently able to lead.  And I'm hurting.  More than the normal hurting.  It is abundantly clear that I cannot live that life.  My life, for now, means spending most days in bed, conserving energy in order to have a decent dinner date with MM, and saying no to trips I'd like to (and should) make.

I've come to realize that the entire experience has one underlying theme (NB: I struggled b/w theme and mantra) -- My body takes the lead. 

When I consider an invitation, I start by considering my body and whether it could handle the plan.  This doesn't reject ALL plans that it can't handle, but those have to have a strong reason like a wedding or a serious health incident.  Even then, my body influences how I go about the event, planning rest and medication schedules.  I also need to plan a rest period (even beyond my normal rest mode) after the event ends -- it's typically a one-to-one ratio with one total rest day for each day I lived a semi-normal life. 

My goal? For my body to follow, to support, to permit.  I aspire to one day let my mind, my soul, my spirit, my true "Me" take the lead.  I hope to be me-driven, not body-driven.  It'll take time, probably another round of surgery followed by both TLC (a challenge in itself) and a lot of work.  But I WILL get there. 

Bravery, Tenacity, Hope -- Lessons in Being a Patient

I confess...I want to share some healing thoughts and express how much I admire the determination and bravery of two people facing serious medical battles.

According to the doctors, the seizure my Uncle had a few years back was almost a good thing.  At least initially, they didn't think the two were directly related, but it alerted them to a mass in his brain.  He's battled brain cancer for the past three years, including a lot of treatments that leave him foggy and struggling physically.  He recently walked his daughter down the aisle at her lovely wedding.  He was struggling though and the docs debated whether it was worth trying another operation.  They went ahead with it and found the cancer had gotten much worse than they imagined. 

But, still, he's fighting.  They weren't sure he'd return to himself after the recent operation, but he's exceeded every expectation.  He's fighting to walk and to communicate.  He faces a tough battle, but he's working hard and committed to making the best of every moment.  He wants to live every moment of his life.

Another fighter -- I've coined the term "mother-un-law."  While I mostly use it to amuse myself, I think it is more accurate than just saying "my boyfriend's mother" since it isn't like MM and I are in the same level of boyfriend/girlfriend relationship as two sixteen year olds might be.  She introduces me as her future daughter-in-law (which does sometimes lead to an awkward moment of folks congratulating us on a still-to-come event).  MM's mom has battled a range of medical issues for many years and has faced several hospitalizations.  She recently experienced some shortness of breath and other issues that led them to do a cardiac test on Monday.  It showed significant blockages and suddenly it went from a quick in-and-out test to admitting her and planning a triple bypass.

We'd been planning on having her come visit for two weeks near Christmas but she'll face surgery tomorrow (Thurs 12/13), two days in the ICU, two weeks in the hospital, and four weeks or so in a rehab setting.  Of course, it took her by surprise and it took a bit to sink in, but she quickly committed to a great result.  She told the doctor she's going to make it home for Christmas...a goal that is probably tough to meet, but one that shows her tenacity and her commitment to beating yet another health demon.  She's a fighter and, while I'm sure she has moments of fear, she manages to keep a positive outlook.

There's a lot to learn here, a lot to admire.  I've heard more than one doctor say that commitment to healing is a key part of success, especially in very serious cases.  While I do consider myself a fighter, I'm definitely not the most positive person.  Admiration of my Uncle and MM's Mom won't immediately change that, but they are still such great role models.  I know all patients could benefit from just a fraction of their bravery. 


P.S.  Not related at all, and a bit awkward to add, but do remember my first giveaway ends 12/14.  I may be a bit delayed, but the winner should be up by Saturday night if I can't get online on Friday. 

Sharing the Journey - Endo Syptoms & Diagnosis

I confess....when I started this blog, I certainly knew I was likely to ramble on about many a random topic (hence the name!).  I did, however, expect to have a few frequent threads including thoughts on health and fitness.  Life took a turn and the gym-rat has been in hibernation for quite some time, while health has taken even more of my mind with the back pain journey. 

I expected, however, to talk a lot more about dealing with endometriosis.   While I joke that the back pain "cured" the endo, it is still a part of my world in many ways.  I promised myself long ago that I'd talk openly about endo in the hopes of helping at least one other woman either feel less alone or helping find her way to a diagnosis.  This post is about the latter...about the symptoms I ignored and the process of getting to a formal diagnosis.  And, yes, it'll have some more detail than some folks might like to hear, but I think that detail is what could help someone recognize the symptoms in her own life. 

• Signs & Symptoms

I was never one of those girls who wanted their period.  It always sounded like a hassle.  I wasn't happy the day it came and I definitely didn't enjoy sharing the "news" with my mom.  She was excited for both of us....and called EVERYONE...okay, maybe it just FELT like everyone, but I didn't really want to spread the word.  I was 13. 

My mom had "warned" me that it'd likely be heavy.  It wasn't so "bad" at first, but it got heavier with time.  And even in the early days it was more than I think is typical, although I've definitely heard stories of women with "worse" (these are the words that feel right, I keep using the quotes because I dislike the negativity, but I'm going to stop since endo IS negative....even if menstruation is natural and normal).  My periods always lasted 6 or 7 days.  I made a change to tampons because pads gave me a rash and there were times when I'd have leakage problems after less than an hour, even with the higher absorbency options.  Nighttime was pretty awful and I was often too worried about needing to change to sleep much.  Sometimes I'd set an alarm to go off every two hours so I could at least nap between bathroom trips.  My OB bill (my favorite, in part b/c I could easily carry a large number without having to bring a tote bag) was insane. 

And then there's the cramps....a word that doesn't even cover the pain I eventually had.  My mom had said that "we" were lucky and didn't get pain....and I didn't at first.  It built gradually, almost sneaking up on me.  I can't recall when it first hit, but I remember trying Midol at some point in college.  It got bad around age 20, seven years after I hit puberty.  Around that time, I'd have at least one day when the OTC meds didn't help at all and I had trouble functioning.  In grad school, it became my norm to end up in the fetal position for a good chunk of the first few days.  Eventually, the pain not only got worse but stopped being confined to a couple of days a month, first starting a few days before my period and lasting the duration.  Then, in a fairly sudden leap from there, it never stopped.  And one day I passed out from the pain at work.  I fell out of my chair and my secretary put me in a cab.  And I finally spoke up.

Before I move on, I'll add a short mention of the "least spoken" side.  Sex can hurt (and treatment via continuous birth control can severely hurt libido).  At times, I'd have severe cramping for days after.  I'm happy to "talk" more about this side via email to any women with questions but want to limit what I write out of respect for others in my life.

• Diagnosis

Once I "spoke up", endo was mentioned fairly quickly (which isn't always the case...).  I just knew that was the right diagnosis the first time I read about it.  However, endo can only be diagnosed via surgery so it isn't the first thing they check for when a woman is experiencing severe pelvic pain.  I went between my GP and GYN for months doing tests, especially because the pain wasn't confined to my period (I think that's a bit unusual, but not unheard of).  I had a lot of different tests, including a number looking at gastrointestinal issues.  Despite the fact that I'd waited so long to speak up (or maybe because my journey had already been long), I wanted a label and a reason "NOW" once I did.  I remember going in for a pelvic ultrasound and feeling conflicted...I wanted an ANSWER so a "negative result" was hard to hear even though I knew it was a really good thing since some of the potential diagnoses would have been pretty severe (i.e. uterine cancer).

After eliminating some "easier to diagnose" possibilities, we scheduled the surgery.  A pelvic laproscopy is a relatively minor surgery, but it is still surgery.  I wasn't too worried about it though, I was really just glad to be moving ahead.  I actually "failed" my first pre-op check...they do a check-up before doing non-emergency surgeries and will postpone if you are ill (I ended up failing quite spectacularly since I developed walking pneumonia with the first hints showing the day I went for the pre-op appointment).  When the surgery finally came about, I was more nervous about the answer than the procedure.  When I woke up, other told me that they did find endo and the doc called me after I got home to confirm (he was gone when I woke but we had a follow-up planned and he did call that night).

In many ways, endo is a frustrating diagnosis since it is a chronic and incurable condition.  However, for me at least, just having a name can help someone feel a little less lost and a little more "recognized"...like she isn't insane or just complaining too much.  For me, taking the pill continuously (i.e. no inactive week, no period) has been a big help, but it is far from a cure.  I do still have pain, sometimes severe.  I've had two more laproscopies since the first one...they also try to remove painful tissue growths, so it is used to treat in addition to being used to diagnose. 

• Moving Ahead

While I know what I experienced...what I still experience...isn't "normal" (like I assumed at first), I also know I'm not alone. It is part of my daily life, at least in the daily pill, but I have learned to live with it and it is MUCH more under control. .  Endo can be disabilitating, but it isn't always and identifying it is a key step to living with it (and, hopefully, keeping the symptoms at bay). 

I've met some great women, many online, who inspire me and who make me feel understood.  If I can be that for someone else, then there will be a positive to my journey.  Please do email me (brand new, blog-focused email address in the right-hand column) if I can answer a question or just provide support. 

• P.S. 

I started this post on Monday, finished Tues around one (it is now Tues 11PM).  I started to get some cramping in the afternoon, wondered if it was just on my mind so feeling it more (sometimes it hides under the back pain...just not my focus point but does sometime hurt).  I found myself feeling weepy.  Later, I got spotting.  Turns out -- when I assembled my weekly pill case, I somehow missed the BCP (maybe the 2nd time this has happened & I accidentally missed more than a day).  I wonder if my body already felt "different" since, even when I'd only missed one pill (Sunday night's), I felt the NEED to do an endo post. 

Took the Tues pill this evening (saving Su & M...more than once i've dropped and lost a pill so good to have extras of the tiny things!).  Didn't double-up since that makes me feel ill and there's really no need (since normal use has a week off every month, two days in like a year isn't an issue in "regular" functioning of the pill).  Already a good bit of cramping but I think I headed it off.  Plus, I assume the regimen for my back pain is helping with the potential pelvic pain.  In a way, it IS good to know things still function...I know bleeding on the pill is NOT a real period, but it still seems like a positive sign that the spotting hit when it should...shouldn't go beyond that (and I did get much lighter on the "ordinary" pill regime, it also helped confine the duration of cramping, but the pain was still too high).