Saturday, July 30, 2016

Pinning my hopes elsewhere

Photo Credit

I thought I'd give a brief update from the last week.  It has been a big one full of ups and downs.

The ups:
1) I finished my last college course requirement for my certification as an IBCLC!  Now it's on to 90 hours of lactation education, CPR certification, and applying for the exam by mid-November!  I'm on track to take the exam in April and be officially certified by July of next year!!  I'm so excited.

2) I was cleared to go for walks and went for two of them!

3) I was cleared to go for (reasonably easy) non-stationary bike rides.  I've gone for zero of them, but I'll change that soon!

The down:1) Well there's really just one.  So it's 3-1 in favor of this being a good week, right?

All's been going well with my hip, and now it's really only the nerve pain in my feet keeping me from doing daily activities (washing dishes, cleaning the house, etc).

I went back to the neurologist yesterday. Every test he has run so far has yielded normal results and my feet aren't getting worse. I *think* they're getting better. They're at least getting less consistent about when they hurt. The inconsistency is great on the days I do a bunch of stuff on my feet and they don't hurt, but awful on the days I do the *exact same things* and they hurt like hell. It's psychologically pretty challenging.

The neurologist thinks that the problem is in small nerve fibers that need to remyelenate or regenerate.  Because the tests they've done so far are measuring function in all the nerves of my lower legs, the small and large nerve fibers can't really be separated out, and problems with the large nerve fibers are what would show up.  So I was given the option of a punch biopsy to count the number of nerves in my skin, but declined since it wouldn't change treatment.

Instead, we added a second drug to hopefully get the pain to stop interfering with my life.  From the medical perspective, my nerves are still healing and should be given a year to do so.

From my mental health perspective, this is my life.  My feet hurt.  This is the indefinite truth and what I need to do is figure out how - through a combination of medications and non-drug therapies and lifestyle choices - to live with feet that sometimes hurt.

I'm not giving up hope, I'm pinning my hope elsewhere.  Now I'm hopeful that even with permanent damage to my nerves I can enjoy my life.  People do this.  So many people live with chronic pain!  And I need to do that.  My feet have hurt for three years now, and the waiting for them to get better is just so old and I do find myself giving up hope for a pain-free life. So why keep making that the end goal? 

Would I be thrilled if my feet healed and I got off these drugs?  You bet.  We're pretty certain this nerve damage was caused by a drug in the first place, so I am - to say the least - not thrilled to be on more drugs and have more potential side effects.  But I'm going to go live my life with hope, joy, drugs, and whatever else it takes.

Wednesday, May 18, 2016

What's wrong with Brea's hip anyway?

With such a huge outpouring of love and support, I feel obligated to explain to each and every one of my well-wishers, food bringers, and company keepers why I just had surgery (again) on my right hip.

There are some explanations of my first surgery elsewhere in this blog, but I'm fresh from more than a week on narcotics and still laying on my back most of every day; I don't have the energy to find the entries and link them.   This is going to be as quick as I can - before I fall asleep unexpectedly or have to do more physical therapy or something.

I hurt my hip running, but it wasn't because of running - it was because the head of my femur wasn't smooth.  It was like a square peg in a round hole.  The hole is the socket side of the joint, called the acetabulum.  This was due to the way my bones formed and I could have done it hiking, biking, dancing, or virtually any other way I had chosen to be active.  This condition where the two bones don't fit together correctly is called femoroacetabular impingement (FAI).  All the beating of that square peg in that round hole tore the cartilage that lines my socket (acetabulum).  That cartilage is called the labrum.

So.  I had this tear.  And it hurt like hell.  So the surgeon repaired it; he sewed it up and anchored it to the acetabulum.  And then he shaved the edges off my square peg of a femoral head.  All better.  Physical therapy and get back to running!

Except that's not how things worked out.  In the winter and spring of 2014/2015 I went back to my surgeon and he got me back into physical therapy for one last-ditch effort to get back to running.  So in late April 2015, I broke up with running.  I didn't want to keep doing something that was causing me pain.

Weeks later, still always having a bit of a nagging pain that I figured was my hip recovering from trying to run, we flew from Seattle to New York to Dublin.

By the time we arrived in Dublin my hip was screaming.  I spent a lot of time in bed while my husband explored.  It was miserable.  We'd spent a year planning and saving for that trip, and I was in excruciating pain.  I found a few things that helped, but the pain I experienced whenever I sat for more than about an hour was obviously not liveable. 

Back to the surgeon, who said "I can re-scope you...or you can try physical therapy again."  Back to PT.  I failed PT.  Even the car ride there (45-50 minutes) irritated my hip!

My surgeon did an injection to confirm the pain was coming from my hip (spoiler:  it was), and I decided to have a repeat scope (arthroscopy - they take a little camera and a little set of tools into your...well, your dislocated hip...I try not to think about this part too much).

All we knew was going to happen was that they would tighten up/repair my joint capsule, which is now done routinely but wasn't done in my surgery in 2012.  The thought was that the instability created by my looser joint capsule could have led to micro-tears and, hence, pain.

The surgeon was also going to check the 2012 repair, look for additional tears (because if they were near the 2012 repair they'd be difficult to see), possibly shave off another bumpy edge on my femur, and check out some other stuff.

All we know for sure now is that something looked pretty ugly in there.  I don't know for sure yet what happened, though I think it's most likely the 2012 repair just failed.  In any case, my surgeon decided to do a reconstruction (which is more involved than a repair).  I got a donor graft.  I'm sure at my post-surgical appointment on Friday my surgeon will explain all as he goes over the photos and videos (which we've already seen because we have our own copy at home!  Crazy?  Maybe.).

Today is the first day I've been totally off narcotics.  The last week has been up and down and strange.  I'm still processing some feelings about having a donor graft.  We didn't even fully realize this was the case until we saw a card in my discharge paperwork telling me where to send a letter thanking the donor's loved ones and letting them know that, in death, their loved one's tissue has allowed me to do x, y, and z. Kind of heavy. 

After two surgeries and what that means for my family, and now having a donor graft, I feel like I need to be a good steward of my hip and this tissue.  As everything feels more like my own body again, I'll have to wrestle with how active I want to be and in what ways.  I expect I'll be more of a cross-trainer than anything else now.  Hiking, biking, rowing, running, plyometrics, HIIT, weightlifting, yoga, etc. I'll do it all.  But I know I'll miss long-distance running.  I'll have to chase the runner's high some other way.

Saturday, March 19, 2016

I'm Alright.

I'm not sure if it's by the standards of Kenny or Jo Dee, but I'm definitely alright.  My feet really do seem to be doing better, and I feel less run-down now that my blood pressure is back under control.  I still stare at my new medication and convince myself to swallow it every morning, but so long as my feet continue to feel better I'll continue to take the stupid pill. 

The next week will be busy.  On Monday I start pre-operative physical therapy for my hip. This way I'll have as much functional strength as possible going into surgery so that my recovery will be easier and faster. 

Tuesday I see a neurologist for some new perspective on my foot pain.  I'm finding myself nervous about this and arming myself with peer-reviewed studies and trying to be ready for the new medical terminology that might be thrown at me.  I've become such a professional patient.  I now know that the more I can speak a doctor's language the more seriously they will take my complaints, observations, and suggestions.

Wednesdays are always busy and this one will have a little extra oomph as The Beast has an unusual evening commitment, but Thursday ought to be a normal and relaxed Thursday.

Friday Bean has off from school and we'll bake pumpkin bread to eat instead of cake at his birthday party on Saturday.  Bean currently hates cake, which I find simultaneously endearing and bizarre. 

So we spent much of today getting ready for Bean's eighth birthday party (how is that even possible??  EIGHT???).  We made a big Pikachu and some tails for a game of Pin The Tail on the Pikachu, spray painted some ping pong balls to turn into Pokeballs, and we created some Pokemon Bingo boards.

I'm not one of those moms who really enjoys putting together a party, but Bean is one of those kids who has big ideas and will execute them with or without your help; we might as well go along with it so everyone makes it through with ten fingers and toes and little property damage.

We have also been removing wallpaper from our kitchen for the past week or so.  There are at least three - possibly four - layers of wallpaper on there.  Some of it was papered over, some of it was painted over, and some of it was behind a shelf that we decided to remove (it will go back up after we've painted.  There were 50 years of wallpaper on that wall, so we obviously took pictures.  Today we headed over to Walmart to pick up the last of the supplies we needed for party prep and stopped in at Sherwin-Williams for some color chips.

I never expected the kids to get SO excited over a paint store.  They each came home with a thick stack of paint chips that they then treated as both inspiration for their rooms and trading cards.  We're focusing on getting the downstairs painted this spring.  We need to always keep every other part of the downstairs in mind because you can see at least two other rooms from every room you are in - the colors need to flow!

Despite a decent amount of time spent standing, only my left foot hurts and it's not nearly as bad as I would expect it to be.  So.  Optimism.  I have it again. 

It will be really nice to have some projects finished and literally a fresh coat of paint on my very plain house when I'm recovering from surgery.  Let's hope I don't decide, while mostly stuck on the couch, that the colors are all terrible!

Also, thanks so much everyone for the emails and Facebook messages and texts and phone calls and invitations.  I've peered in on Facebook a couple times, but it has been good for me to remain signed out for the most part.  I don't seem to get as sucked in, and it's encouraging me to get up off the damn couch and see how my feet fare.  And that is what I feel like I really need to be doing right now.

Tuesday, March 15, 2016

So much sleep.

To try and get rid of the foot pain, I have been on a nerve drug for over a year.  The dosage was increased a few weeks ago.  Side effects include sleepiness, appetite changes, difficulty rousing in the morning (if I take the drug too late), sleeplessness/waking up very early and usually with a start (if I take it too late), and night terrors (if I skip my last dose before bed).  I also think it's impacting my word recall, but I'm not sure.

I also went off a blood pressure medication a few weeks ago, since it turns out it could be causing the foot pain. 

I traveled over the weekend, which meant eating a lot of sodium.  Because of my kidney disease, my body is particularly sensitive to sodium.  So when my blood pressure was high on Sunday I didn't worry too much.  (Ok, I worried too much.  But I tried not to.) I drowned my kidneys in water and on Monday my blood pressure was down.  But today I took it again.  I'm supposed to take it frequently so we can be sure my kidneys aren't beaten up too badly - high blood pressure can damage the kidneys, and also a spike in my blood pressure can indicate that my kidneys are in distress.  It was high again, so I waited 20 minutes and took it on the other arm.  Still high, so I called the doctor.  The receptionist asked how I felt and I had to admit that I felt like shit.  I have had a headache for three days that Tylenol put a dent in but didn't resolve, and where I was up at 5:45AM Friday and Saturday (I didn't need to be) I slept uncharacteristically late on Sunday, had trouble rousing on Monday, and wanted nothing more than to go back to bed while on the phone with her.

I also have my period and I can't get enough to eat.  And I either want a whole cake or a nice greasy burger.

So I feel a bit like a science experiment and am becoming not-opposed to adjusting my own medications.  (i.e. I wonder if reducing doses of the nerve drug is a bad idea...)

The good news is that I'm confident all this sleeping has nothing to do with depression, which I absolutely have also been struggling with over the last couple of months.  I've thought about medication for that (usually Zoloft is enough to take the edge off and get me through a rough patch), but hell if I'm going to welcome any more side effects right now.

Today I've spent time on the phone with the nephrologist's office and the orthopedic surgeon's office (about whether or not I can do the drug protocol after surgery because of my kidneys), and I spent some quality time with my calendar figuring out just how many appointments I will need rides to during the first 2 or so weeks after surgery.  My husband will take a solid two weeks off and cart me around to a post-op visit to the surgeon, physical therapy, and the lab (to pretty frequently check my kidneys).

Feet. Kidneys. Hip. Feet. Kidneys. Hip. Feet. Kidneys. Hip.

I just want everything to stop hurting, but I don't want to kill my kidneys to do it. 

And thinking about priorities and what could be making me so tired today is exhausting and costing me spoons and, well, no wonder I'm so fucking tired, right?

And with that, I am going to fill out paperwork for a neurology appointment next week and get yet more sleep!  Oof.

Monday, March 14, 2016

Managing my spoons

In order to understand this post, you need to read Spoon Theory by Christine Miserandino. 

I have known about Spoon Theory for years, but generally my chronic illness doesn't limit my spoons.  Except when pregnant, things are pretty smooth and I don't feel sick in my daily life.

But over the past 4 years I have absolutely felt sick.  I've been in a tremendous amount of pain. 

I injured my hip, had surgery, and will have surgery again in a couple months.  No, I don't regret the first surgery.  I am better off than I was.  I just hope that I can be better off still.  And by that I mean that I hope I don't have to give up traveling with my family simply because I can't sit for long periods of time.

While recovering from the first surgery, my opposite foot started to hurt.  I was in a boot for a suspected stress fracture when we moved across the country.  When we moved back, I had some new and bizarre pain and it was in both feet.

Over the past few months the foot pain has at times been unbearable and I have found myself planning my days and weeks around what I expected my feet to feel like.  Cocktail party late in the week?  I can't clean the house before it because I'll already be in too much pain.  The kids have a basketball game today?  I need to stay off my feet in case the game is running late and I need to stand outside the court.

Some mornings I woke up, put my feet on the ground, and the floor felt so hard and cruel and painful that I knew I wouldn't be able to withstand the pain of a shower (the hardness of the shower floor and there being nothing I could do to soften or angle it made showers one of the most taxing parts of my day).

I've been on a nerve drug for the pain and finally got a diagnosis.  Frustratingly, I then figured out by myself that the drugs I'm on for my kidneys might be the cause.  The timeline makes sense, assuming the initial pain really was a stress fracture.  I went on the kidney drugs as the stress fracture was healing and then this nerve pain started up because of the drugs.  Maybe.

I've been off the drugs for 2.5 weeks.  I think my feet are much better, but honestly I'm now so accustomed to being cautious about how much I'm on my feet that it's hard to say.  I put them to the test by making dinner today and I don't even have a little pain, so either the placebo effect is totally amazeballs or the drugs were the culprit.

Except.  Now I'm off the kidney drugs.  And I travelled over the weekend and ate a lot of salt.  My blood pressure was frightening yesterday, but better today after returning to my low-sodium diet and drinking a lot of water.

AND if the kidney drugs were the culprit, I'll go off the nerve drugs.  Which means night terrors.  I shit you not.  I took this drug short term in college and weaning it was very memorable.  Even now, if I accidentally skip my last dose I wake up in a panic in the middle of the night.  I never enter REM sleep.  I don't dream.  I just wake up in a panic.  Sometimes sweating.  Over and over and over.  So I have that to look forward to...I hope?

And don't forget I still have hip pain when I sit.  So I can't sit for long periods of time and I can't stand for long periods of time.  Cocktail parties are my nightmare.  Even studying for classes.  Having coffee with friends.  Sitting at the dinner table.  Painful!

I'm so tired of physical therapy and multiple doctor appointments and hurting and planning my days, weeks, months, life around what will hurt and whether it's worth it.  And I worry.  I worry about my kidney health and my heart health, which is so closely related to the kidneys.  I worry that I'm going to be in pain forever.  At what point do I accept whatever amount of pain I'm in?

And I'm impatient.  I'm waiting for my husband to be able to take two weeks off work (because I won't be able to drive and I will need to get to physical therapy, the lab for kidney tests because I'll be on drugs that can damage my kidneys, the kids need to get to activities, etc etc etc).  The delay means I will have to skip some things I'd like to be doing this summer and deciding to go ahead and do others I may really regret - like sitting all day for 5 days a few weeks after surgery...

About a week-and-a-half ago I ran out of spoons.  My husband didn't even know what I was talking about when I sobbed to him over the phone "I'M OUT OF SPOONS!  I HAVE NO MORE SPOONS!"  He was on his way to a conference and I was home alone with the kids completely out of spoons physically, mentally, and emotionally.  Between anxiety, pain, and the mentally taxing logistics of being the parent who maintains everyone's schedules, makes sure everyone is seeing the doctor and dentist when needed, who is the default sick care whose schedule get re-arranged (and oh!  I do have a schedule, and it is busy.  Someone imply to me one more time that being a stay-at-home mom is easy and I'll punch them in the nose!)...I ran out of spoons.

That night I turned into a puddle of neediness at bedtime.  I told the kids that I hurt all the time, and I have this job that is completely thankless.  I reminded them of how much they crave recognition when they've done something cool, or even just worked really hard at something.  And most of what I do is basically invisible.  I work hard to get a meal on the table - feet on fire - and I'm often met with complaints.

Both boys cried with me, hugged me, and told me how much they love me.  Bean wrote me a note telling me how good I am at being a mom.

In an effort to take care of myself, quell my mounting anxiety (you guys - TRUMP????), and force myself into some reflection and meditation, I'm signing out of Facebook for a little while starting tomorrow.  I'm not sure for how long.  But I need to make sure that I guard my spoons and consciously choose what to use them for, because running out of them was seriously ugly. 

If you want to reach me, please email me at contentedlycrunchy at gmail dot com.  If you have my phone number (or my other email address), those are also great ways to reach me.

See me regularly and didn't know I was in so much pain almost all the time?  That's because I'm a Spoonie.

Monday, October 12, 2015

Mom is human.

I have always felt very strongly that I should answer the questions my children ask - about sex, death, math, reading, whatever - as honestly as I can and in as comprehensible-to-them a way as I can.  And I think my children need to know that I am human.  I am fallible.  I am damaged.  I am strong.  I am complicated.  And I love them unendingly.  Forever.  No matter what.

But sometimes...oh sometimes answering those questions and giving my children a glimpse of my most human parts is both natural and seemingly cruel.  Cruel to my kids or to myself, I'm not sure.

As I've fallen off the blogging bandwagon and hardly blogged in the two years since we left the town where my children were born and, hence, am sure to have new readers, I will give a quick re-cap.

I have PTSD and my main trigger is emergency vehicles.  Firetrucks are especially triggering.  Generally I am prepared when I'm driving to do a maybe-kooky thing to stop flashbacks because flashbacks while driving are not ok.  Sometimes I am blindsided.  It all goes back to the pivotal moments of my life as I watched my mother's life slip away suddenly.  So suddenly.

Tonight I briefly explained my trigger to Bean.  A-Train was there too, and knowing the way his little brain operates I'm sure he didn't miss a word of it as he stared out the window.

I was driving us home from a dinner and we pulled out onto the main road through town.  I heard sirens.  Check the rearview mirror.  Nothing.  Look ahead of me.  Nothing.  Check the rearview.  Nothing.  Check every side street.  Nothing.

By the time I saw the ambulance (thank goodness it wasn't a firetruck), I was stopped at a red light and it was coming toward us.  Heartbeat quickening.  There is no one in the north- or south-facing left-turn lanes so the ambulance can surely pass.  It's ok.  It's ok.  It's ok.  I must have mumbled something to The Beast as I held his hand and confirmed with him that the best thing for me to do was stay stopped exactly where I was.

Because Bean asked me why I was upset.

I've never given him details.

I've never told him that I ran after a firetruck to help Grandma Nita and I came back to find her, essentially, dead. 

But tonight, in the midst of trying to calm my body down and keep the adrenaline from really flowing, I told my son about my deepest, darkest, toughest, most-hidden damage. 

When Grandma Nita died I chased a firetruck.  It turned the wrong way and I wasn't sure how they would come back to help Grandma Nita.  And now my body sometimes does a thing where it acts like I'm back on that day.

The day Grandma Nita died.

Grandma Nita died.

My mom died.  And I'm your mom. 

It's ok for them to see that I'm human.  I don't think I'm ready for them to realize that I am mortal.

Sunday, September 13, 2015

Brea's sweet potato, black bean, quinoa...thing

Posting this here because I get asked for it frequently.  It's just one of those things I made up.  I always use a jar of black beans that we cooked from dry, only for the sodium level.

2 medium sweet potatoes
chili powder
a can of black beans
2TBSP chipotle in adobo, whizzed or finely chopped. 
1 cup quinoa

1. Preheat the oven to 375 degrees
2. Peel the sweet potatoes and cut into 1-inch cubes (or smaller)
3.  In a bowl, coat the sweet potatoes with oil (I like safflower, but vegetable would work), and spices. 
4. Roast in the oven until soft and slightly browned (check every 15 minutes or so)
5. Rinse the quinoa very well in a strainer.  It will be bitter if not rinsed well.
6. In a medium-sized pot, bring 1.25 cups of water and the 1 cup of quinoa to a boil, then reduce to a simmer for 20minutes.
7.  When the quinoa is done, add the chipotle in adobo and black beans, mix together.
8.  Serve on tortillas with feta cheese on top.
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