Fighting Back, Part Three: Recovery at Home

In advance of my upcoming appointment, this is part three of my (second) back surgery
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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 (when first written).  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

And reposting Part Two (of Three in the original series), one day before my 1y mark and a few weeks before my next and possibly last appointment with my surgeon.  I plan to do a Part Four shortly after that appointment.
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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.

I know, rambly as always!

(Image by Andres Moreno)

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

As a general rule, I don't intend to re-post entries from my prior blog here at HSG.  However, there are exceptions to every rule...  I'm fast approaching the one year mark from my second back surgery and I have a check-up with my surgeon in early June.  After that appointment, I intend to post an update but it feels like it would be ungrounded without first sharing the earlier stages of the journey.  So, with acknowledgment to myself and my other blog, here's part one:

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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)!

(Image by sportEX journals)

Pain Medication Part Three: Withdrawal is Real, but Still No Regrets

When we last left off, I had finally found what I hoped (what I still hope) was the actual answer to my debilitating back pain and had a revision surgery performed (specifically, a posterior lumbar fusion and laminectomy w/ screws and rods to revise to a prior anterior lumbar fusion w/ cages).

• Post-Op Pain, Medication Anxiety

Having been on pain medications for some time and having a tendency towards becoming adjusted to medications quickly, I'll readily admit the first days were torture.  It is harder to control pain when you've already been on pretty high levels of medication and while the press-for-more-meds pump helped a bit, it was rough going.  I had to remind myself repeatedly that the post-op period ends and appreciated my doctor's simple reassurance that "It WILL work" (I'd sworn I was going to scream "YOU did this to me!" when he came in, but he's simply too nice and truly has a stellar bedside manner).

I stayed on the same level of medication for a while, despite being a bit anxious to start decreasing the dosages.  My surgeon, my GP (who continued to write my pain med prescriptions both because he was local and because consistency is key in pain-land), and the clinical pharmacist (who served as an intermediary and really handled the medication management) all told me to give it time before I started to drop my dosages.  I asked about it more than once and they urged me to wait till a couple months had passed and then wait again as I started physical therapy.  They were right.  I couldn't have handled the next part earlier in my recovery.

• A Quick Aside on Pain Medication, the Body, & the Brain 

There are a LOT of traps with serious pain medication, but I'll reiterate that I don't regret the path I took and believe pain medicine helped me survive years of terrible pain by making it awful-but-survivable instead of completely paralyzing (note: I did need to go on disability, a topic for another day...).  I've already mentioned that my body quickly adjusts to new meds and new dosages meaning medication becomes decreasingly effective.

I don't like the word "addicted" as a descriptor for someone using pain medications as medically indicated, but "dependent" is pretty accurate.  Missing a dose of the longer-acting pills leads to pretty awful things...shakes, sweats, chills, and the incessant feeling of ants crawling inside your skin.  I'll get to the process of withdrawal in the next bullet-point, but suffice it to say a sudden stop is not only difficult but dangerous.

One more point on the "science" of pain medications.  I can't tell you the detailed reasons, but pain medications can actually cause pain....a lovely cycle, no?  When you go off pain medicine, you may face increased pain because of the changes in your brain chemistry and it is tough to know what is "real" and what isn't (the folks on House talked about this once and I believe House said something like "The torture is the cure.").

• Withdrawal

It would diminish the reality of this stage to make that heading anything other than the single word.  

Eventually, my team and I agreed it was time to start decreasing my medications.  This was done with a LOT of supervision and advice.  It was done slowly and actually slowed down more than planned because of how difficult the process was for me.  We started with the long-acting meds (oxycontin) and would adjust the dose down every few weeks....at first trying to decrease both AM and PM doses at once and then moving to doing them separately to ease the change.  It wasn't a matter of weeks, it was months.  

There are images we see in the media of withdrawal and dependence.  We see the recreational addict sweating and hallucinating through a complete, sudden withdrawal.  We might see a "Very Special Episode" where grandpa is confronted for using his hip surgery meds for too long and agrees to stop and all is well.  It is a bit different when you decrease properly used, long-term pain meds under medical direction. 

Truthfully, it was a pretty horrendous process.  I suffered night sweats, chills, nausea, and the aforementioned feeling of bugs crawling inside my skin (think severe pins-and-needles that last for hours and hit each limb in turn).  During one of the early stages, I called for help and wound up in line at CVS visibly shaking and feeling like an addict (again, I WAS dependent, but addiction implies a different mental state).  They added in a medication to help with the withdrawal (clonidine), though ironically I had to taper off the withdrawal meds to avoid withdrawal from them...

Simply put, withdrawal sucks.  I got through it by focusing on the goal, including proving to everyone (myself included) that I truly intended the medications as a temporary solution.  I also gave myself permission to wallow at times...sometimes you just need to allow yourself to feel sorry for your lot.  You can't stay there forever, but it is okay to "visit."  If I needed a treat to make myself feel better, I tried to allow it guilt-free.  And I may have had more than my usual share of red wine both as a mental treat and (honestly) to help my muscles relax (note: I'm not telling anyone to drink on meds, but I'd be lying if I said I didn't.  Knowing how the meds effect you on their own and paying careful attention to the impact of alcohol is critical if you choose to drink.  I'd also recommend not using formulas that include acetaminophen if you consume alcohol because it does bad things to your insides.).

• Withdrawal, Part Two

I celebrated the day I was finally off all the long-acting meds and probably announced it way too often.  But, despite the fact that I was still coping with the withdrawal symptoms, I was proud (and rightly so!).  I did continue to use the shorter-acting pain meds (oxycodone) as needed (typically twice a day, though I was permitted up to three per day by the label) for about a month and then we started in on reducing those.  Week-by-week, I went to 1.5 pills, 1 pill, .5 pill, and then none.  

This second stage of medicine reduction was been a bit different.  The physical symptoms did show up, but much less than they did at the height of the prior stage.  What I found hard here was the mental side -- I needed to face some of the pain head-on.  I'd gotten used to knowing I had a weapon when the pain got too high and I only wielded it (i.e. took the oxycodone) when I felt overwhelmed.  On the dreaded pain scale from 1-10, it was usually over a 7 before I'd "give in."  While the meds never erased the pain, they eased it.  I had to, over the weeks of this stage, pull on inner strength as much as I ever had in the years prior (ok, I also wallowed and indulged cravings a bit).

• Me, Drug Free 

I'm writing this a few several weeks before I plan to post it, but the day I'm starting this post is the third day I've been pain-med free in years (Tuesday on the week I went to 0 pills).  I've been urged to use a much lighter prescription medicine for the worst of days, in part because my history of hives puts a lot of OTC stuff of limits...it is another mental challenge to accept the "help."  I'm still pushing hard in physical therapy and we're readying to move and that is NOT going to be easy on my body and my stubborn mind insists I do my share of the packing

The truth: I still have a lot of pain, but I NEED to believe this is "my brain on drugs" (that phrase and the image of a fried egg it provokes totally date me...)....or perhaps more accurately "my brain off drugs."  The hope, expressed and believed in by my entire medical team, is that the pain will start to fade as my brain chemistry evens out.  

Postscript to come....

(Image Credit: Sue Clark)

Pain Medication Part Two: A Long Journey

Expanding on the note to my last post...As I've considered what I want to share (I "write" posts in my head ten times before sitting before the screen), I've known that I want to be extremely honest.  Too much of the reality of chronic pain/illness is hidden away, making thousands feel utterly alone and magnifying the difficulty of our journeys.  So I'm telling it like it is/was and I'm "naming names" when it comes to meds, in part so that someone searching for understanding might stumble on this blog and not just find ads for addiction treatment centers or forums populated by recreational drug users.

There's risk here.  Hopefully, I'm a job-seeker one day and I know that even anonymous blogs are traceable.  But, if they dug enough, then they'd be able to find enough of my story some other way and I'd rather it come from my voice than from a printout of my CVS bills.  Also, and this is key, I DID NOTHING WRONG....and I want others to be able to say the same thing loud and proud.  We are fighters, we are survivors (even if it isn't a life-threatening illness that we battled).  The only way to really fight the stigma associated with certain meds or with spending time on disability is to tell our tales.  

• This Is Your Blogger On (Medically Indicated) Drugs

It was my general practitioner who saw me, really saw me, at my worst and offered help.  I'd used short-acting pain meds on an as-needed basis for a long time for my endometriosis (Demerol, Percocet)  and I'd used some longer acting formulas after my first back surgery.  But Dr. B proposed something I'd never even imagined -- methadone.  Like many, I'd only heard of methadone as an addiction treatment, but it is also a strong pain medication in its own right.  It also has less of an impact on the mind...less of a high so to speak...and that's why it is his first line choice for chronic pain management.  He also prescribed Percocet for more immediate relief (Percocet is oxcydone plus tylenol, I eventually asked to move to just the oxycodone because tylenol has little effect on me and it can be really harmful if taken too much....yes, it can cause even more damage than its bigger siblings).

Speaking of "high"s....I find there isn't much of a "high" from in pain meds when used for long-term pain.  Yes, I get chattier when I've had my meds, but I truly think that's simply because I feel well enough to be more me.  I never got groggy and I don't think I got euphoric, even on crazy dosages of strong meds.  Certainly, those responses can happen in short-term use, but I think it is different with long-term chronic pain management.  I may have seemed a bit more "on" when my meds kicked in, but I think that was simply the "high" of being relieved from a bit of the burden of life in pain.  It was the chance to feel more like everyone else feels naturally.  I've found many other pain patients have had similar experiences.

Also, I never got complete pain relief from pain meds.  When they "worked," they simply brought the pain levels down a few notches, often taking it from "excruciating" to "bearable."  And I truly believe my "bearable" is a pretty intense level of pain.  There's no real way to know what others feel and how they experience pain -- one of the reasons I believe that pain patients need practitioners who really listen -- but I think I have a high pain tolerance.  As PainShrink (who'll star in another post) said, it's hard to say I don't when I didn't get help for the endo until I passed out at work...

I'd spent enough of my life as a patient to know my body and how it responds to medication.  I'm a petite gal, but I typically require higher doses of medications than average in order to get a response.  At the same time, I get adjusted to medicines very fast....as a kid, I'd need a new allergy medicine each year because the old one would stop working.  It's far from an ideal combination, especially when you add in that I withdraw poorly....I'd spent a week dry-heaving after discontinuing an anti-depressant years ago and had a few nasty experiences when I'd miss even "simpler" meds like a single birth control pill (taken continuously to manage the endo pain).  And this certainly all came into play with pain meds. 

• A Long Road

Increasing my dosages was never something I took lightly.  More than once, it was my husband who told my doctors that I needed better pain relief than I was getting.  I'll need to remind myself to do some more posts on pain patients and their partners, but for now I'll say that I highly recommend having the partner be an involved partner in the medical journey.  Sometimes, I just needed another set of ears at an appointment, whether with my GP or one of the many specialists I saw.  Sometimes, I just wanted to know my now-husband had a chance to hear what the doc was saying directly and ask any questions  Other times, I needed an advocate.  It also helped ease my concerns about me looking like too much of a drug-seeker which is why I asked him to tell my doctor directly when he suggested I needed a higher number of the short-acting pills per prescription.  

In time, Dr. B started working with a clinical pharmacist who specifically worked on chronic pain medication management.  PainPharma was (and is) an amazing asset and she helped me over more than one hump.  She reminded me that we were doing everything right and that she'd be there on the other end when one day I was ready to stop the meds.  Eventually, she suggested we move away from the methadone.  After trying another medication that left me feeling very ill, we made what was mentally the most difficult move...to oxycontin.  

Oxycontin is the same medicine as oxycodone in a controlled-release formulation.  Really, it wasn't any more powerful than the other combinations I'd tried, but it carries a huge stigma and I cried when PainPharma suggested it.  She had talked me through other changes, but this one required extra reassurance.  She reminded me that she knew I took my meds for the right reason and that she wouldn't keep recommending them if she didn't believe that.  She helped me see that oxycontin is not an evil in itself even if it makes headlines and some people abuse it.  Oxycontin...yes, I'm repeating it on purpose...may be misused by many, but it is also properly used by plenty.  And (for years) that included me.

• Years of Searching in One Bullet-Point

I spent years on pain meds.  But throughout that time, I was always looking for a way out...a cure instead of a band-aid.  I saw several different doctors.  I tried spinal injections, a nerve-destroying procedure, adjustments, physical therapy, even acupuncture (a big deal for a needle-phobe!).  I rarely went more than a couple weeks without some sort of appointment.  All through this time, I knew in my bones that the first surgery hadn't worked quite right, and years later I had my proof when a discogram (a horrid procedure that essentially involved prodding your spine with needles to see when you scream...) proved the pain was coming from that same segment of spine.  Nearly four years after the first surgery, I had a second and the doc confirmed again that there was instability present that was likely the source of the pain.  

Still to come...a post-op period and then the slow (and, honestly, horrendous despite amazing support from PainPharma, Dr. B., my surgeon, and my PT) process of weaning off the meds...

(Image by .v1ctor Casale.)

Endometriosis Awareness Month

I hope to make entries on this blog a weekly affair, but I was overly optimistic when I put the first post live the week before our move…I actually have two more pieces on pain medication drafted, but I want to interrupt the series before March is out to mark Endometriosis Awareness Month.

My Story: Silent Suffering

Endometriosis impacts the lives of millions of women and, in turn, every person who loves those women.  In my case, I suffered from increasingly painful, heavy periods that only got worse as I entered my mid-20s.  It wasn’t simply a matter of popping a Midol…the pain was often overwhelming and made it hard to function.  Still, perhaps because of all the silence surrounding women’s health issues, I said nothing.  Gradually, the number of days each month that the pain impacted me increased until it was present the better part of the month.  Not every day was intense, but it wasn’t confined to “just” the days right before and during my period.  And the heavy flow days began adding up too.

I thought about seeking help but I didn’t.  In fact, I had an annual exam with a gyn and was ready to say something, but he never asked about my periods and I got shy (easy to feel when in such a vulnerable position!).

What finally made me speak up?  I passed out from the pain at work, sending my chair clattering, and leading to my secretary putting me in a cab and sending me to my GP.

Speaking Up and Learning About Endo

Once I spoke up, I was lucky and the docs listened.  Endo can only be diagnosed surgically so they investigated other possibilities first including via ultrasounds, a barium enema (awful!), and an upper GI series (a barium swallow).  Each time, I felt an odd mix of frustration and relief when the tests turned out negative.  I had, however, been pretty certain that endo was the culprit from the first time it was mentioned and eventually a pelvic laparoscopy (an outpatient surgery) confirmed my hunch.

There is no cure for endo – a frustrating reality given how much suffering it can cause.  Endo involves tissue that would normally be found in the uterus being located elsewhere.  This can cause pain when it responds to hormonal shifts.  While not every woman with endo has fertility trouble, but it is one of the most common causes of female infertility.  It can also cause crippling, debilitating pain and loads of lost productivity.  It is a tricky beast and the amount of tissue growth doesn’t necessarily correlate with the impact on the woman.  A woman can have small tissue growths that cause terrible pain while another woman might have quite a lot of growths and not a single symptom.

In some ways, I’m lucky.  I take continuous birth control pills meaning I go from week three in one pack to week one in another, never taking the inactive pills and never getting a period (btw, a period on the pill isn’t truly “real” anyway and there is no medical need for that week off).  For me, that has helped a lot.  Truthfully, endo also fell lower on my radar when severe back pain began to dominate my life and the pain medication (woohoo, sorta fits in the midst of my meds series!) I took for the back pain dulled the endo too.  As I’ve stopped those meds and gotten at least some relief from back pain (a whole separate story…still have some pain, still have hope I’ll improve), the endo has made itself known again.  I’ve had three surgeries to remove endo tissue and wonder when (not “if”) another will be on tap. 

Why Observe Endo Awareness Month?

What do I hope to accomplish by sharing my story?  First, I hope to make at least one other woman feel less alone.  I know that finding other endo sufferers online helped me.  Second, I want to increase awareness about endo and help fight the stigma around issues surrounding menstruation and women’s health.  Too many women suffer in silence and too few people understand how much endo can impact a woman's life and the lives of her family, friends, and colleagues.  Heck, my blogging platform doesn't even recognize the word.  Third, I want to be one more voice encouraging increased research (and funding for research) into the cause of and treatment for endometriosis.  Maybe it is just a view colored by being an endo patient, but I really believe that if men got endo there would already be a cure.  That aside, this condition is far too common and causes far too much suffering (both in terms of pain and fertility) to remain a bit of a mystery.  

Pain Medication Part One: Band-Aids and Desperation

The proper thing to do would probably be to start with a general introduction to the blog.  Or maybe an introduction to me (though you can find a bit of both by clicking on the Introductions tab).  Or a post that starts, well, at the beginning.  Or, at the very least, a post that steers clear of controversial issues.

But, I don't really feel like being proper.  This is what's on my mind these days.  And in...or, more accurately not in...my body.  So this is where the blog will start.  It is shared with the hope it shines a light on a sometimes difficult to discuss part of life with chronic pain.  Side Note: To be honest, I must admit I started writing this series several weeks ago so "now" isn't quite now...I wanted to have drafts for a few poss before going live.

• The Big Debate

There are few issues as controversial in the chronic pain community as pain medication.  I believe this is a decision each patient needs to make for herself (or himself...please assume all pronouns are intended to be inclusive).  There are very valid reasons to steer clear of strong pain medications.  Opiates and narcotics have MANY downsides.  Anyone considering them should fully educate themselves on these issues (e.g., dependence, addiction, potential exacerbation of pain over time, etc.).  The problem is that all too often this decision is tainted by stigma and judgment.   

Here's the plain truth -- Pain medications exist for a reason.  Pain medications have VERY valid uses. There IS life after pain medication.  Pain medications are NOT inherently bad.  It is not fair to let the misuse of medications result in the shaming of those who use them properly.

This is my journey through the maze of medication (well, technically, this is part one....I ramble and I need to break this story up...).  Spoiler Alert: Despite the downfalls, despite  the very real pain of physical withdrawal, I do not regret my choice to use pain medicine.

• Pain: Where It All Starts

I'd used pain medications before, both in my journey with endometriosis and in the period leading up to and following my first back surgery.  Approximately six months after my first back surgery, I found myself spiraling.  I stopped physical therapy, in part because of insurance reasons and in part because it had gotten so hard that I was dry-heaving just minutes into my routine.  The pain that had seemed to be remitting bounced back.  Fiercely.  I knew then, years before the doctors confirmed it, that something was wrong.

I think I've blocked out the full force of the pain but I remember knowing that it had hit a new level when I couldn't manage to follow the silly banter of Hoda and Kathie Lee on the final hour of the Today Show.  They outwitted me and, if I don't mind saying so myself, I'm typically a smart gal.  I went from feeling so overwhelmed by pain that all I could do was watch tv in bed to feeling even more overcome so that all I could do was watch the ceiling fan spin.  I watched for hours.

There are no words to describe that place, the place where pain takes over and overtakes the self.  Where intense pain dominates your every thought.   Where you resist waking...that is, assuming, you've managed to sleep...because you know that all the day will hold is more pain.  Where time goes so slow and yet other hours pass in a fast fog when the pain overwhelms your mind and you just kind of go away.  Where you are defined by the pain and you have trouble imagining anything else.

• Band-Aids & Cures

I'll talk about that place in the future, probably many times.  Even though I couldn't recall what it felt like NOT to be in pain, I was still committed to fighting with every ounce of energy I could muster.  Some days I had to hit "pause," the energy wasn't there, but I committed.  I needed to believe that there was a future, even if it felt far away.  I knew in my bones that my pain had a source and  I had to believe that someone had an answer.  It was hard to hope, but it would have been impossible not to.  As I say about many things in pain-land, you do it because there's no viable alternative...you do it because you do it, even if that sounds a bit trite.

The experience I had in those days with one pain clinic will also be fodder for another day's post (tentatively titled: A Healthy Sick Gal's Top Five(ish) List of Care-less Care Providers), but I needed HELP.  Desperately.  And, for me, I felt pain medication could provide that help.  I told myself every day that pain medicine was a temporary measure.  I believed (and still believe) that pain medications are often a Band-Aid, a way to stem the symptoms while you look to answer the real question, the "Why" of the pain.  They let you live (and I truly believe they saved my life) through the bleeding while you find the source.  Thankfully, I found my GP agreed and believed in me and my commitment.  He saw my pain and my truth...a vision for which I will be eternally grateful (and that will make another post, the Healthy Sick Gal's List of the Very Best Caring Care Providers).  He recently told me he remembers seeing the pain in my eyes and thinking he could help act as a central contact while I worked with specialists to track down the problem.

• To Come --> A Long Journey, A Hope, and the Battle to Break Free

That's the start.  Still to come..my journey with pain meds, a tendency towards tolerance, a search for an answer, a fight to break free...

Note: I understand there is no true privacy online.  I realize my story can be found, even if I (for now, at least) don't sign my name.  Could someone find this and judge me?  Sure.  Let them.  If they looked hard enough, they'd learn the facts anyway so they might as well hear the story behind them.  I KNOW that I have used pain medications in the way they are intended to be used so I say loudly that I did NOTHING wrong and have no reason to be ashamed.  I am proud to have fought my fight.  

(Pills image by Pam Roth; Bandage image by Philip Bump)