Let’s Do This

I somehow managed to get all A’s this semester.  Truly by some miracle.  My head has been out of the game for a while, kind of with everything.  I’ve got some thick fog around me and sometimes it gets so bad my eyes literally can’t focus on things.

We had a party on Saturday that was hip themed.  Everyone had to come dressed up as something that had the word “hip” in it somehow.  I went as a hypnotist, Ben went as Hippocrates, Shelby was hip to be square, her brother was a chip, etc.  This was the first party we’ve thrown since before my last surgery that didn’t revolve around an activity– ie, movie watching.  It ended up being one of those parties that went really well but could have easily gone horribly.  There were people from all areas of my life, which can make for an awkward scene, but they all got along fabulously.  And I, as was the goal, got pretty wasted.

The reason why I’m telling you this, is because I think the parties I had before my surgeries personify the feeling I had going into them.  Last September we had a housewarming party/good luck Jen party that was for some reason 90’s themed.  I think enough people had a good time, but I certainly wasn’t one of them.  I couldn’t drink, it was too close to my surgery date, and I don’t think I would want to even if I could.  I got overwhelmed with people asking me about how I felt and I popped a xanax and sat on my couch by myself.

My pre-op appointment was on Wednesday.  Pre-op appointments are a nightmarish event of being shuffled from one person to another– surgeon, anesthesiologist, nurses, blood test guy, etc– with lots of sitting in the middle.  Each person has to ask you the same series of questions so that they can cover the hospital’s ass.  And each person asks you the terribly personal yet sterile questions, about your health, what you consume, how you feel.  Last time I embraced this peppy optimistic and hopeful attitude, so that when someone asked me, “Are you ready?” I responded, “Let’s do this!”

This time though, I know what’s coming.  I don’t think I can ever really be ready.  It’s like sticking your hand in the open door jam when someone’s about to close it and they ask you if you’re ready.  You’re never ready, but if it’s what you have to do, well, let’s just get it over with.

Hence, the very different responses as the two parties.  The first I was too preoccupied with wondering and worrying that I couldn’t manage to have a good time.  This time I did my darndest to have the best time, because I knew it might be the last time I’m enjoying myself for quite a while.

I can’t imagine how this must sound to you reading it.  Probably pretty dreadful.  And I’m really sorry about that.  I wish I could tie this stuff up with a pretty little bow like I used to be able to do, but that’s just not where I’m at right now.

There is something I can say though, to make you and maybe me feel a little better.  And it’s this.  Every time I start to freak out about the surgery, about the blood tests at my rheumatologist’s, about wondering if I will ever feel good ever again, Ben will hold my hands and look at me and say something like, “Whatever happens, we’ll deal with it when it gets to us.  It won’t necessarily be fun or easy, and yeah, this all sucks, but we got this, we can do this.”

And then I breathe.

And say, yeah, we can do this.  I can do this.

It’s just one foot in front of the other.  And pretty soon my right hip will be on the other side and that’s just one more thing off our checklist of things-that-can-maybe-make-Jen-better.

So, yeah, I guess I am ready.  Let’s do this.

4 weeks, four weeks

My university has called me at least a half a dozen times in a panic wondering why I haven’t registered for classes next semester.  Each time I attempt to explain that I’m taking a medical leave of absence, that I’ve already turned in the paperwork, and that I’ll be coming back after one semester off, there’s nothing to fear.  I thought that emailing my surgeon for a letter that shows that my recovery time will be long enough and severe enough that school next semester isn’t an option would be helpful.  What I got was a letter that said by four weeks I should be up and running well enough to return to school.

Sorry, what?

This is the same surgeon who restricted my driving after my LEFT PAO for 12 weeks.  Now that it’s my driving leg, four weeks is fine?

Last week I was laying in a bone scanner and thinking about what I know.  My body is baffling to me.  Here I was producing a picture of all of the bones in my body, and the thing is still a total mystery to me.  All I know is that I have to listen to it and it will let me know when things are right and when they’re wrong.

My rheumatologist gave me a preliminary diagnosis of fibromyalgia.  As long as my blood tests and bone scans come back normal, we’ll proceed with the diagnosis.

Fibro is new to me, and scarier.  It’s chronic, it’s incurable, it’s misunderstood, it’s mysterious.  And it makes my life so much more difficult.

I don’t know fibro yet.  We’re still meeting each other and learning each other and apparently we’ll be together for the rest of my life so we have some time to do it.  But I do know hip dysplasia, and I do know about recovery from a PAO, and I do know that last time I couldn’t go back to school at four weeks, or six weeks, or maybe even twelve weeks.  And I know I’m not going to impose that time line on myself for this round.

I saw this picture the other day on one of my facebook support groups and drew a copy of it an tacked it on the wall so I can see it from my recliner.

I’m trying to embrace the reality of my situation, when it comes to my impending surgery (4 weeks and 2 days away) and when it comes to tackling this new chronic illness I’ve been presented with.  Those expectations just comes with so much anxiety, so many disappointments and heart aches.  When in reality I’ll have good days and I’ll have bad days and really it’s just life and I’m going to face it the best way I know how, without really knowing anything.

Psychosomatic Straight Jacket

I’m at school today much to the chagrin of every cell in my body.  And for once it’s not pain, it’s just a common cold, just like everyone else.

I’m here because I’ve been missing a lot of school this semester.  Last week, when a front carrying cold and wet blew in, I was in so much pain I couldn’t get out of bed.  The injection in my hip is starting to wear off so I could certainly feel that, but it was more too.  My whole body was protesting.  It felt like the flu, minus all of the symptoms I have today, just the horrible body ache and total, all-encompassing, exhaustion.

This has been happening more and more often, that sort of fatigue that just whips my butt out of nowhere and leaves me incapacitated.  It’s worse than being sick.  It’s pain.

It’s why I have my first rheumatologist appointment tomorrow.  I’m armed with a 3 and a half page list of my medical history and medical complaints.  It’s absurd.

This appointment has been on the books for months now.  I’ve been preparing myself for it.  I’ve had nightmares about it where my rheumatologist laughed and said everything was psychosomatic and I was forced into a straight jacket that dislocated my shoulders and elbows.

I know that’s crazy.  But hear me out.  It took me more than 7 years of people poking and prodding at me before I was able to get my hip dysplasia diagnosis.  And now I have that and I’m still not healthy.  I have learned that my health is a battle and I only have me to stand up and do something about it.  Before at least I had the story of my knee spontaneously dislocating, but even still I was “too young” to have the amount of pain I did.  I was written off.  And now I’m so so exhausted, I really don’t have the stores of energy to fight for myself any more.

So we’ll see how tomorrow goes, we’ll see what she says.  We’ll see if I get a diagnosis, a medicine, an exercise routine, anything.  Because if I can just say, I’m sorry I’m too tired to come to school today, I have ________, you have it on record, I’m not lying.  Or because there’s a chance maybe there’s a cure for this too, or at least something that makes it so I can get out of bed in the morning as a 22 year old instead of an 89 year old.

Dec 30th

Dec 30th is the day of my RPAO.  That’s only 2 months from tomorrow.

I have to be in the hospital 5 days post-op, just like last time, so I’ll be spending New Year’s in the hospital.  I don’t really mind missing the holiday too much.  New Year’s is like the 4th of July, but it forces you to stay up late and it’s cold and the food isn’t as big a deal and you have to create unrealistic expectations for yourself and basically the 4th of July is way better.  At least this year my resolutions should be pretty reasonable to accomplish: get out of bed, get into your recliner, learn how to walk (for the 4th time), poop.

What will be annoying and problematic about my surgery date is that it means I’ll have to charge my insurance company for 2014 and 2015 which seems like a logistical nightmare.  But the next surgery date was Jan 30th, and all that trouble seems worth it for getting this out of the way.

I wish I could tell you how I was feeling about all of this.  I passed over the stages of grief pretty quickly into just feeling kinda blah kinda nothing.  Not in a bad depressed way but in a I’ll be dealing with this very soon sort of way.  I’m sure the panic will set in at the end of the semester when I start to surgery nest again.  What’ll be nice is surgery nesting disguised as Christmas decorations.

But I think a lot of the lack of panic is I know what’s coming.  I know how to prepare myself, I know what I needed last time that I neglected to have, I know what I thought I’d need and ended up not being as important as I expected.  I know my recovery process.  I know that I can’t expect myself to do much for the first little while but that I should maybe expect myself to do more once I could.

A Quick Thank You

There’s that moment in any sick person’s life when they have to let everyone know the reality of their situation, formally or otherwise.  And in this day and age, as a member of my generation, a facebook announcement is typically the way to go about it, followed with an email to my professors.  The result is an outpouring of love and support that I think only a person who has gone through major medical procedures can really appreciate.  And to all of these people, I thank you, I really do.  But you’re not who I want to focus on right now.

There are those people in my inner circle, the ones I text daily, talk to regularly, drink wine with, call when I’m anxious or bored, and who do all the same with me.  They are the ones who weren’t surprised when it came down to deciding to do my RPAO because they had already talked me through the possibility.  They are the ones who over the past few days have come to just sit with me, to hear me complain, to love me anyway.  You know who you are.  Thank you.

My parents are particular here, as this is the second time they’ve dropped their own problems and personal concerns to be there for me.  Dad drove me to Houston for my appointments, wheeled me around in a wheelchair, and came back yesterday to drop off a thermometer when I was afraid my injection site was becoming infected.  And Mom who takes the time to call just to say she loves me, to make sure I’m on top of insurance, to just let me know she’s proud.

There’s Sister, who I have kind of dragged into this mess but who knows how to lift my mood with a gif or a text, who complains to me equally as much as I do her, who relies on me as I rely on her.

And then there’s Ben, the man of the hour, the man who is so good at dealing with my stuff of taking care of me of knowing when I’m going to need ice cream, the man who is so good at balancing my problems in his life that he puts every caretaker ever to shame.  Somehow, for better or worse, he chose me as his life partner and I am so grateful.  Truly, I couldn’t be more honored.

Even before my medical stuff started to overtake my life in the very particular way it has of late, I’ve been thinking a lot about the people around me.  Because y’all are just so cool.  From my family I didn’t chose (but would if I had the choice) to the ones I chose for myself, I really don’t think there’s a more lucky human being in the world than me.

I love you.

Déjà Vu

Something about this all feels very similar, but also so new.

This Tuesday held a battery of tests for me of kinds I distinctly remember hating, had me and Dad scrambling across Houston between two different Texas Children’s Hospital’s campuses and resulted in a conversation with Dr. R that seemed all too familiar.

My right hip, just like my left hip pre-op, had a torn labrum, was mildly displastic, showed positive signs of impingement, didn’t have a perfectly spherical femeral head, and I still stuffer from joint laxity.  In other words, my right hip, just like my left hip pre-op, was a border line case with all of the problems just barely present but definitely there.

And just like last time, my surgeon waffled between treatment options, PT, scope, and upon ruling those out finally settled on a RPAO being the best option.  It went like this.  “Jen, do you think that the PAO was the correct treatment option on your left hip?”  “Without a doubt, Dr. R.”  “Okay, then, let’s do it.”

The surgery scheduler should be calling me this week, though let’s face it, if they don’t call by this afternoon, I will.

When it comes to health care, the unfortunate truth is you have to be your own advocate.  No one has the time to care about you, you have to care about yourself.

When I imagined doing my second PAO, I always imagined it a little happier, a little brighter.  I always thought that it would be a little more on my own terms after more time had passed and that I would know without a doubt that my RPAO would be my last major step in 20-30 years to take care of myself, that after that I could run off like an almost-normal person and get my PhD without a hitch, shoot out babies like they’re nothing, work on home repair projects on some house we bought in some quaint neighborhood of some cool city, and that by the time I had to get my total hip replacements I would have a steady job as a professor, publishing left and right, and could take leave for a semester and my children would be old enough to help me through it and they would, gladly.

I get it, it sounds like a pipe dream.  But it’s my pipe dream.  And I’ve been having to relinquish it, or change it, or put it on the back burner.  Because it’s not just my hips any more.

Dr. R recommended I see a rheumotologist.  It’s something I’ve been thinking about too, because I’m showing signs of fibromyalgia.  And even if I don’t have fibromyalgia, I have been diagnosed with hypermobility syndrome (joint laxity).  Surprise surprise, it can behave very similarly to fibromyalgia.

So in a little less than a month I have an appointment with one of the best rated rheumotologists in Austin.  Maybe she can shed some light on the reality of my situation.

But for the time being, I’ve just been pissed.  I’m mad that my health has been declining, that some days my pain is so bad that getting out of bed is a challenge, that I’m not the student, the friend, the parter I want to be because my body is keeping me from being me.  I’m pissed because my body is something I’d rather disconnect myself from, to check out of, to find a new one because it doesn’t feel like me.  It isn’t cooperating with what I want it to do and I am MAD.

Though that’s for now.  Give me a few moments and I’ll be sad.  I’ve been suffering from depression, a little bit, this go round.  I know what it is, I recognize it and accept it, and the best thing I can do for it is to try and keep moving forward, to keep trying to find answers even though somedays it feels like I’ll never get to the end of it, and who knows, maybe I won’t.  But that doesn’t mean I can’t keep trying.

Give me a few more moments, and all I’ll feel is here we go again…

2014

Tuesday is my one year post-op anniversary.  Twelve whole months.  Technically, as of Tuesday, September 9th, 2014, I could not claim that my left hip is still recovering from surgery.  8-12 months is the post-operative recovery time for a PAO, and well, that’s me, I’m past that.

I stopped posting on the blog long before I was done with my recovery.  But I had to step away (literally and figuratively) from hip stuff.  It was really exhausting, thinking about hips all the time, and the moment I could, I enjoyed being a fully functioning human being again.

And you know what?  That was really really wonderful.

Hiking in style with my collapsable cane in the mountains in Oaxaca.

I started out the new year in Oaxaca, Mexico with Ben and his parents, Jim and Char.  Even though I relied heavily on the use of my cane, I was able to keep up better than expected.  I even climbed up and down (with Ben’s help) a huge staircase at the Monte Albán ruins.

A view from the top.

I am forever grateful to Jim and Char for the trip.  Not only was it an incredible experience to travel in Oaxaca and explore in a new place, but it put a deadline on how long I could be a sad crippled girl.  I was determined to not let my recovery hinder our vacation and this pushed me to discover my physical limits, which were above and beyond what I imagined.

In January I returned to university.  I took 16 hours of credits and began working again as a nanny.  Still, I forced myself to take it slow.

If there’s anything I’ve learned through the recovery process it’s how to allow myself to be patient with myself.  Discovering the balance between striving towards my goals and recognizing that I can’t do everything at once has been trialing to say the least.  And if there’s one thing I can count as a success for the spring 2014 semester, it was maintaining that balance (and getting the best report card since ~7th grade, just while I’m tooting my horn).

Presenting my project, Charity at a Glance, as a King’s Creativity Scholar.

You know what else is great about balance?  It makes room for fun stuff.  Who knew?

Me, at Mardi Gras in New Orleans, dressed to the part.

Me and Ben beer tasting at Odell’s brewery in Fort Collins, CO over spring break.

(Left to right): Shelby, Ben, and me in line for a SXSW show in our lovely hometown of Austin, TX.

Me rock climbing on the Green Belt (Austin).

(Left to right): Shelby, me, and Ben at the photo booth at our friends’ Wilson and Cullen wedding.

My friend China and me drinking beers and toobin’ Texas style down the Guadalupe River.

With a little patience and a little time (and one screw removal surgery later)…

4 screws that once held together my pelvis.  Those were in my body once.

I flew to Malawi at the end of May.

Hippos at sunset at the safari at the end of my program.

For those of you who don’t know, I’m in school studying what could basically be summed up as cultural geography and my particular focus is on sub-Saharan Africa.  Being able to travel is not only crucial to my happiness, it’s crucial to my career.  And in May, after four years of being away from the continent, I was in a new country to explore.

While I was in Malawi, I conducted a number of interviews with Malawians while living in a home stay in a rural Malawi village.  The interviews focused on the informants’ attitudes and perceptions towards the presence of foreign NGOs (non-governmental organizations) in their communities and country.

And afterwards, Ben came and met me in the capital, Lilongwe, and we traveled for two weeks, seeing both Victoria Falls in Zambia and Lake Malawi.  You can read a little more about it here.

Me and Ben at Vic Falls.

Sunset at Lake Malawi in Cape Maclear.

Me snorkling in Lake Malawi to catch a glimpse of some cichlids.

Driving on the wrong side of the road.

It was incredible, truly.  If my 2014 has looked like the perfect year, it’s because it has been.

And I’m telling you all this because I’m telling me all this.  I’m using this as a reminder of what can happen when I’m not in pain, of how great life can be when your body is in tune with your goals.

Because, as difficult as it has been to admit to myself, I’m about to restart this journey with my right hip.

Shortly after I returned from Malawi, I noticed the signs– groin pain and pinching, my hip locking up or giving out.

My family and I are starting to discuss the next steps.  The reality is that surgery is a trial on not just me and my body but on everyone around me as well.  Although, so is being in pain.

Regardless of what the next months and years have in store for me, I at least have 2014.  I have proof of the benefits of seeking out help and getting better.  Those pain-free months stand as representatives of the best that life can offer and I had the great fortune of living them.  Now they’ll be my guides to the light at the end of the tunnel, the hope for the future that keeps me motivated.

Okay

I feel a little bad about leaving this blog the way I did for the past two weeks.  But I needed some time to be negative and that’s what I’ve allowed myself to do.

 

My 2 month post-op mark hit on November 9th, relatively uncelebrated.  I’ve been going to physical therapy (PT) twice a week and (theoretically) doing exercises every day.  Mondays are in the pool and Fridays are on land.  I prefer the former.  Typically there isn’t a therapist in the pool with us, so it’s just me and a whole bunch of people (mostly women) who probably average out to be about 80. 

Talking with the other patients is my favorite part.  In my head we all size each other up, speculate what we did to get in there.  I seem to be the outlier.  I think most of my fellow patients see their granddaughter in me.  That’s why it’s so shocking to them to hear what I’ve been through and what my recovery is like.  Chronic pain is often viewed as the curse of the old.  That I’ve been dealing with it in one capacity or another for 7 years is baffling.

I just hope that dealing with this now means I can delay it when I’m older.  I’ll be like Benjamin Button.  That sounds okay to me, as long as I can skip the being an old man baby part.

 

My biggest fear is that this won’t be the end of being in pain.  The past few weeks I’ve started to have significant back pain.  I thought at first it was from my herniated disc but this is different.  The pain originates in my mid-back and goes up and to the right and down and to the left and feels cold– the way too-hot water feels.

I’ve also started to have fainting spells.  If I stand for too long, cooking or doing dishes, I’ll start to get tunnel vision, my ears ring, my head throbs, and I have to go lay down for a few minutes.

Good lord.

 

Overall though, things have been getting better.  This week itself has been a big turning point for me.  I’ve been productive.  I get up in the morning and get dressed, clean the house a little, and work on school work.  I sometimes feel like I’m finally getting to the light at the end of the tunnel.  And other times, I’m just too exhausted to care.  And honestly, that’s okay too.

This is a post with emotions looking for a place to land

Here’s something I didn’t see coming.  My new lease on life, aka walking, has left me feeling pretty down lately.

When I was bound to my walker getting up and doing tasks felt less manageable.  They were less manageable.  So I didn’t get up too often and remained content getting things done from a chair-bound state.

Now that I can get up I feel like I should get up.  But I get tired so easily, so quickly.  And then I get grumpy, feel like I can’t do anything, then don’t do anything, and spiral into a mound of guilt and despair that I didn’t do anything.

Ben stayed home today.  He said it was because it was raining and he didn’t want to bike and he had to come home early anyway to take me to physical therapy.  But I think in some part it was because this morning I cried for something close to 15 minutes for god-knows-what reason.

I mean, really, I don’t even know why I cried for 15 minutes.  It just kept coming.

It all comes down to this simple little pattern in my life: I’m all or nothing.

I need to be going 115 mph or 0.  I don’t know how to be productive when I can’t be as productive as I want to be.  That’s why, before the surgery, even in excruciating pain, I would find my way to work and school and traffic and the bagillion other things I needed to do and come home entirely wiped out.

Needing to deal with this has also been a pattern.

So I’m beating myself up about that too.

In between that last line and now Ben gave me a hug while I cried and proclaimed, “I have all the feels!”

Needless to say I am now going to watch TV and feel bad about it tomorrow.

Third Time’s a Charm

I’ve learned how to walk three times.

1. When I was approximately 12 months old, like everyone else.
2. After I dislocated my right knee by standing on it.  The muscles around my knee atrophied pretty bad and for years my physical therapists thought my continued pain had to do with walking incorrectly.
3. Yesterday.

 

The easiest time by far was that third time.  Well, actually, I can’t say that for certain.  We’ll see how it goes.  Ever since Doc R (who is my newest reader, hey Doc R!) gave me the okay I’ve been trying to zoom around the house as much as I can unassisted.  Turns out, doc’s okay didn’t wave a magic wand over my body and heal me instantaneously.  In fact, if he had been capable of that I would have gotten rather irritated because where was that magic wand before the surgery? 

I digress.

What happens when I walk is a relatively huge limp (this is by my standards, not Doc R’s), and the morphing of my already cankles into super cankles.  I have also come to the acceptance that I can walk the length of about a room without getting uncomfortable, so that’s what I’m allowing myself for now.

But I have to give myself credit.  I mean look at all these things:

• I took a shower by myself yesterday (standing up!)
• I haven’t taken a single Alieve today
• I haven’t taken any prescription painkillers since Friday
• I went to a wedding on Sunday and danced with my crutches.  With heels on.  (Doc R– if you’re reading this, you should feel at the liberty to eliminate from your mind any and all things I mention on this blog that you wouldn’t recommend.  Just allow yourself to believe I am exaggerating for effect, or something)
• I am walking

 

I’ve chosen not to update Hipocrisy lately, regardless of my most recent developments, almost entirely because of one thing.

I’m really really really tired of talking about my hip, thinking about my hip, writing about my hip, worrying about my hip, discussing my hip, explaining my hip, everything about my hip except for showing off my badass scar.  By not writing about my hip I was taking away some of its power and pretending to be a little more… normal, I guess?

For instance, this Sunday my friends Tom and Jane got married.  They are my friends and they are friends with most of my friends, so I wanted to participate in everything fully.  

Friday night was the bachelorette party, so I made sure to switch to crutches from my walker in advance.  And I was able to keep up most of the night as we bar hopped.  Speaking of, do you know what’s interesting?  Watching drunk people watch you as you crutch towards them before they stumble away at the last second.

Saturday night was the pre-party, which I attended.  And then Sunday, as I said, was the wedding.  At which I danced with my heels and crutches.  It was awesome.

 

There have been so many times lately that I’ll do something I normally wouldn’t have done, like shift weight onto my left leg, or crawl into bed instead of flopping onto it.  There have been so many times lately when I don’t think about my hip, when everything escapes me for a while and I feel whole and healthy.

What’s cool is that I’m getting to the point that the possibility of feeling that way all the time doesn’t feel so far away.

Friday is my first physical therapy appointment.  Friday is me and Ben’s anniversary.  Friday starts November.  And November just feels more approachable.  I know I’ll be walking in November.  I know I’ll be doing physical therapy.  I know I’ll be getting stronger all the time.  

And I know I’ll be thinking about my hip less and less.  I’ll be planning for returning to school and working on my project (http://www.charityataglance.org/) and applying to go to Africa over the summer and picking which hikes to go on during our trip to Colorado in March and packing for our trip to Mexico come December.

Do you see all those travel plans??

I’m back, baby.  

Or, at least, I will be.  

Soon.