Wednesday, October 31, 2012

Halloween 2011. Just a little late.

Two posts in one morning.  Really really early morning.  Because otherwise this post will end up TWO years late!

Last year, Bean was obsessed with the movie How to Train Your Dragon.  No matter how much I talked up Hiccup (the main male character) and his problem-solving through knowledge, understanding, and diplomacy, Bean was way more interested in Astrid (the main female character) with her war axe and general bad-assery.

So he was Astrid for Halloween! I loved this costume.  It was the first time I made a costume - ever - and the first time Bean requested a costume, and we made it together as a team and had so much fun!  Plus, I thought it was simply adorable!

So here's how we did it.

1. We went to Once Upon a Child and found this striped shirt (picked out by Bean) and brown skirt that was pretty plain.  We already had the BabyLegs (he picked his favorite color) and the boots.

 2. He made funny faces.  Very important step.

 3. I cut a yogurt container in half.  The bottom became the outside of his pauldrons.

 4. I covered the outside of the yogurt container halves with silver Duck Tape, and wrapped four Duplo blocks in the tape as well.  I attached the Duplos as spikes on the pauldrons, and then took strips of scrap leather (I found a package for very cheap at a craft store) and taped those to the back (one short piece to hold the pauldrons together) and front (two longer pieces, which could be tied and untied to take the pauldrons off).
5. You can kind of see it in this picture...I found little scrapbooking brads that had pyramid-shaped protrusions on the tops and used those as "spikes" on the skirt.  I don't sew and I don't have any fancy equipment, so I just put the brad end through the fabric!

6.  You can see this in the top photo, but I don't have a separate photo of this step.  I took a cheap bath towel and cut a mantle from it (the "fur" around Bean's neck, under the pauldrons).  It was just a circle with a circle cut out for his head and an opening (laced and tied with more of those leather scraps).  Then I cut out some rectangular pieces to cover his boots, and put some more brads on those.  They were also "spiked."

And that's how we did it!  He wore that "armor skirt" consistently for months afterwards until I told him it was too small and we went and picked out another one.  He cracks me up with the skirts.  He knows it gets him attention to wear skirts, but no one has ever said anything negative about him wearing a skirt.  He knows that usually girls wear skirts, but he doesn't know there is any kind of stigma about a boy in a skirt.  And, besides, these are part of his armor!

2 weeks post-op!

Recovery is going well!
 I have been down to one crutch since Friday morning, and I really turned a corner on Saturday - more mobility (I can pick up my leg more and more easily every day), close to zero pain. I'm hoping I'll be off crutches by Friday after physical therapy, though I'm definitely still limping and that's my metric for how long I should keep the crutches around, per my surgeon.

Despite weakness and tightness, I am feeling like I will end up in less pain than I was before the surgery - which is the whole point, so that lifts my spirits. I don't have shooting pains down my leg when I sit for long periods - I have slightly increased numbness in the thigh after sitting, but that breaks up once I get moving again and it's not painful like the stuff before.

I don't know if I'll ever run a half marathon again, but I at least feel like I'm headed in the right direction.

I'm definitely taking it easy, though. Life is moving at a much slower speed, and that's been fine. I'm actually really enjoying my kids right now - even more so than usual. We're playing a lot of video games and reading books and snuggling a ton. Bean had a hard time at first - mainly with missing his dad after he'd been home caring for all of us for a few days straight.  But Bean has settled into things quite a bit more. Now we just wait for Thanksgiving when The Beast will hopefully be convinced to take a few days off, since he's been working 6 days a week!

He's in the midst of some busy and stressful stuff and really needs at least 40 hours a week to work.  So we've hired a friend, J, to help me with the kids (and the dishes and, somewhat, with the laundry and anything else that requires heavy lifting or deep bending).  It has worked out very well - we hang out, she kid wrangles, we are getting out some (did I mention I have also been driving since Friday?  Woot!).

(You might want to skip a few paragraphs to the cute pictures of the kids if you get queasy talkin' about wounds.  I'm about to talk about my incisions.  Which I have heard medical professionals refer to as "ports" and "holes" but no no no they are incisions because that makes me shudder much less violently!)

As of this evening, the steri-strips are off the two incisions (lalalala they're not "ports" lalalala) that are furthest toward my backside.  The rear-most looks like I got a little scrape there.  Seriously, that's it!  It is just flecks of scab - like remnants of the stitches and nothing else!

The middle one is a little more...well...damp?  It definitely looks like there is a layer of skin missing, and a gouge healing.  But it's not too bad.

The third one...I'm going to have to get up the nerve to remove it.  Or maybe I'll make The Beast do it.  It looks the size and shape of a cigarette burn.  I'm afraid to take the steri-strips off of it, and I'm pretty sure I'm supposed to tomorrow.  (Not sure if I may take them off or should take them off...)

And yes, I totally took pictures but I don't want to freak anyone out...

So anyway....

The boys are so excited for Halloween tomorrow.  We've been playing a lot of Zelda (specifically Ocarina of Time), and they're both obsessed.  Bean calls it "Link" and A-Train calls it "Guy."  And they both do fighting moves and act out the defeated/game over fall that Link does.  Hilarious.

They are going to be "kid Link"  (A-Train) and "adult Link"  (Bean) for Halloween.  Which basically means A-Train will be in green, and Bean will wear a red tunic (which only fits Link as an adult in the game).  He's also got sweet knit gauntlets and an enormous sword (not pictured below because weapons weren't allowed at this event).

Bean wore the leggings, shirt, and boots portion of his costume for about a week straight.  Including to bed.  We finally convinced him to let me wash it (I almost offered to just go get another set of clothes!), and he decided to wear an amazing outfit as a compromise.  I'm sad I didn't get pictures!  It was essentially a pirate costume with a skirt over the top and the boots for his costume this year (which, incidentally, totally came from the girls' section at Target.  They're what worked best!). 

I asked him what he was dressed up as:  "A hero."  I dubbed him Captain Compromise and quickly got his costume washed!

Their hats and belts, plus Bean's sweet gauntlets were made by a kind, hilarious, and creative friend of mine who also owns Pretty Smart Stuff - you, too, can ask her to make custom costumes or a lamp shade from soda bottles, or pretty much anything you can think of out of anything you have on hand.  She's clever! (Pssssst!  If you look in her shop, you might find something named after me!)

Somehow the sizes for their hats got switched, and Bean is absolutely set on wearing all red, so he is wearing this teeny hat that looks like a yarmulke sprouted a tail, and A-Train is wearing a giant hat that will fit him for years to come. 

Sunday, October 21, 2012

A law that potentially disenfranchises Americans with disabilities

Photo Credit
During this election season, we have all heard a lot about voter fraud and potential issues with new voter I.D. laws in states like Pennsylvania and Ohio.  My friend Marion sent out an email highlighting an important aspect of this that I have seen mentioned nowhere else.  I can put it no better than he did, so here it is in his words with only the explanation that Marion has a disability that prevents him from getting a driver's license:

Hello to My Dear Friends, It has been a mighty long time since I've caught up with some of you. Forgive me? Here's hoping life treats you well. I'm forwarding a link to you but it won't be active for listening until Monday 10.22.12 at 5am in the morning. This link is a radio interview with me that airs at 6:30 am and 8:30 that same morning on WOSU NPR in Columbus, Ohio.

Here's the story. (Some of this may or may not be included in the story but I think you should know what happened to cause this.) The interview comes out of my experience with the new website for change of address on one's voter record. I'd sent a card weeks prior had not been processed and I was determined to vote in this election. I tried to use the website and was not able to change my address. I eventually learned the website was run by the Secretary of State's office. When I finally spoke with someone there they informed me that "According to Ohio State Law only those who have a driver's license and not the Ohio State issued photo ID card holders were allowed to access the online database". "The Driver's License number is the only way to connect an individual to an identity." They promised to provide me with the language of the law to support their statements. So, I called a couple radio stations, the police and the Ohio Bureau of Motor Vehicles. Of course, the police and the BMV both assured me other than the obvious (driving privilege) there was NO difference whatsoever between the two cards or their numbers. As for the Ohio Secretary of State Jon Husted's office, (on and after the 9th) the response was lack luster. They left me feeling like they neither cared to fix the problems with their website nor about how my rights as a citizen had been violated.

That was inspirational and now this is my new personal cause. This kind of web based discrimination against disabled citizens doesn't need to happen. Please, just spread the word (forward this interview) as much as you deem fitting! This just might become a National conversation.

Today, builders (business, government, or public) cannot even start construction without proper access points and accommodations for people with disabilities as part of the blueprints. Should any government websites be allowed to block disabled citizens access? Just a thought.

Thank you,

This link to the interview will be active at 5am monday 10.22.12.

Thursday, October 18, 2012

Physical Therapy: Week 1

I had my first physical therapy appointment today - it's going to be once a week for awhile, and then I believe more often once I'm actually able to work on strength (as I understand it, that is 2+ months down the road.  This recovery process is no joke.).

I got to the office and filled out a bunch of paperwork.  When asked what my goal for therapy was, I wrote "To run a half marathon? Too much?  How about to walk without a limp?  Better?"  Later, there was the question of what I had previously done for this problem and whether it had worked.  I wrote "Physical therapy.  It worked, but not completely so I had surgery."  And I put "maybe?" next to whether surgery worked.

My therapist came to get me and was laughing and saying "your intake paperwork is killing me!"  I immediately knew I liked him!

His first comment was that we had to fix the way I was using my crutches.  Then he asked for the whole sordid tale of the last 8-ish months (which really starts with 10 years ago when I first noticed my snapping psoas, but I started to really fall apart in February).  He winced over a few things - especially about the physical therapist a decade ago who said the snapping psoas was benign and was just due to my having low body fat.  "Never go back to that therapist," he said.

Then he did some evaluating and pretty quickly said that I have a single therapy goal for this week:  straighten my right leg and lay flat.  Literally, that's it.  A very simple-sounding goal, which I'm fine with because yesterday's goal was to put on my pants by myself (which took upwards of 5 minutes, and I probably fell asleep twice, but was accomplished!).

He kept straightening my leg, little by little, and asking if it hurt.  "'s more like uncomfortable with a side of creepy crawly ickiness."  I can't even describe it.  It's not exactly painful.  More like nails-on-a-chalkboard cringe-worthy.  I wanted to make it stop, but it didn't exactly hurt. 

As far as I understand, there are two things making it feel like this and I have to work on both this week.  The first is that there's a lot of swelling going on there (not surprisingly, right?). The second is that my psoas was cut, so now it would like to curl up into a ball and keep my leg slightly contracted forever and always; not too contracted (I actually can't really pick up my leg), but definitely not straight.

So, for the inflammation: 1) I have to keep icing (but not as often as I have been) and 2) do some light squeezing sorts of exercises to move the fluid toward my heart/kidneys/abdomen/basically parts that will get it the hell out of my body.  The exercises aren't really too bad - he said if I'm getting sore or feeling more stiffness I need to back off because the whole point is to get rid of all that right now.  (There's plenty of time for soreness, right?)  Also, these same exercises will help keep blood flowing while I am mostly off my feet so I don't get a blood clot (because dying would be a bummer!).

For the contracted psoas, I have to lay down and relax and have The Beast help me by starting with a pillow supporting the leg a lot but then lessening the support each time I'm able to relax.  This is the difficult thing for the week - just laying there and relaxing and breathing and not making The Beast pick my leg back up.

I have to breathe through that nails-on-a-chalkboard feeling and let the nails keep scratching until they fade away.  ::shudder::

At the end of my appointment, as I put my shoe on (yes, I can put my own right shoe on!  Another small accomplishment post-surgery!), I said, "I know I might regret asking this, but do you have any sense that you wish you'd seen me before I had surgery?"  Yeah, I know, it's probably dumb for me to ask these questions when I've already had the surgery and can't exactly undo it,  but I partly ask to make decisions going forward about whether to keep running or find another sport/endeavor/sanity-saver. 

His answer actually put my mind at ease to some extent.  He said, if anything, he wishes he'd seen me in February before the half marathon.  He says it sounds to him like I was breaking something down at that point, and he suspects the labral tear actually happened after the race when I was running low mileage but suddenly could not run even 4 miles without limping home.  He also said that once there's a tear, that's surgical. 

So, essentially, once I realized that simple rest and stretching was not going to improve things, it was too late.  I'm ok with that - though I will probably not, in the future, train through even a minor injury without being evaluated.  Live and learn, right?  This time I learned the hard, stressful, painful, and expensive way!

Before I left, the therapist moved the grip on my crutches up higher. The crutches say they are for someone 5'10" or taller, and I am barely maybe 5'7" but he said they're actually only about 1/2 inch too tall for me, so I should be able to make them work for a couple of weeks (we think I'll be on crutches for 2-3 weeks.).  Anyway, just moving the grips allowed me to stand and walk much more erect, which will help with straightening that leg, too.

Onward and upward.  Or, I guess, downward with that right leg to the bed...

Surgical Saga

I am just too drugged to write up the junk that happened with insurance, so I will save that for later.  It was absurd.

For now, I am bored between bouts of narcolepsy.  Plus I want to document my recovery.  This is both for friends, family, and interested readers, and as sort of a service to those looking at having surgery for femoro-acetabular impingement (FAI), and especially those looking at having it with the surgeon I saw - Dr. G. Peter Maiers in Indianapolis.

I did a lot of Googling for stories of recovery from this surgery, and for stories of Dr. Maiers and felt very lucky to find a blog by a young woman distance runner with a lot of experience with Dr. Maiers who happened to have my exact surgery (for FAI with a psoas release).  You might remember I was totally terrified of this surgery.  I had frequent freak-outs about the anesthesia (I have been under general anesthesia several times, but not since I've been a mom and it really REALLY freaked me out.  Thank you to my friend K, an anesthesiologist, for putting my mind at ease in so many ways!).  And, of course, freak outs about recovery - and just how much I ever would recover.

Anyhoo, we headed up to Indianapolis on Tuesday still not knowing whether I was having surgery.  About 5 minutes from the surgical center, Dr. Maier's Physician's Assistant (she is an angel) called to say my surgery had been approved by the insurance company.  So The Beast and I rejoiced, and then I of course said, "sooooo now I'm going to freak out about the surgery part for a little while.  We've been through this and the surgery is the best idea, right?"  (Yes.  I couldn't go through the rest of my life periodically limping and having shooting pains in my leg, and beating my leg after sitting for an hour - even if I have every side effect of the surgery...would it really be worse?)

We arrived at the surgical center and picked up the cuff for my new best friend, The Iceman. This is basically a fancy ice pack.  It keeps me on ice for several hours at a time.  We then registered and waited for a nurse to come get me checked in and started on an IV.

Once I was in my gown, started on my IV of fluid, and approved as not needing to be shaved by a nurse before surgery (something I was so not looking forward to and kind of hoped they would do once I was unconscious), A-Train and The Beast came back to hang out.

A-Train was so adorable.  He has lately been checking on people when they're hurt - he gently pats them and says "kay?  kay?"  (roughly translated:  "are you okay?") and he insists on giving kisses to ouchies - especially if he caused them.

He  had a little toy fighter jet, and he kept flying it around my room and then he would land it upside down.

A, animated:"Uh oh!  Bawa!  Uh oh!"  ("Bawa" is his word for airplane - I have no idea where it came from.)
Me: "Oh did the airplane crash?  Is it hurt?
A, concerned:  "Yeah.  Uh oh.  Bawa."
Me:  "Can you make it better?"
A, turning the airplane over, stroking it, and speaking in a quiet voice:  "kay?  kay?"

Lather. Rinse.  Repeat.  And repeat.  Again and again.  It was so sweet!

Then Dr. Maiers came in and marked my right leg/hip (it says "GPM YES") and asked if I had any additional questions.  He was pretty thorough at my previous appointment with him, so my only question was "you've done a lot of these, right?"  His answer:  "we just did a count, actually, and it was about 240 last year.  So about 20 a month."  (It's worth noting that there are only two surgeons in the state of Indiana who do this procedure, and a handful nationwide.  People are traveling to see these various surgeons.  So it's not like there is a Hoosier epidemic of FAI.)

As Dr. Maiers left, he shook my hand and also The Beast's.  A-Train took note and started shaking The Beast's hand over and over.  SO CUTE.

In the video, he says "Pee-poh!  Dis!"  (roughly translated to "people did/do this.")  I'm surprised it wasn't "guy!  dis!" because usually men are "guy" and women are "mom-o."  Yeah, my kid calls every woman "Mom."

A little while later, my anesthesiologist came in.  We talked briefly about my kidneys and I mentioned I was nursing A-Train.  He immediately responded, "not a problem at all.  We used to tell moms to double-pump, but there is absolutely no research to say that's necessary."   Basically, he answered my question just the way I'd hoped! The staff was generally really great, and I was impressed with how well the surgical center is run - and also with the beauty of the outside of it.  The fall foliage right outside was gorgeous, and The Beast was able to take A-Train for walks in the woods (Bean, during all this, was at a friend's - thanks to a different friend K for that offer!!).

So they wheeled me to the OR and had be walk in (colllllld in there!) and lay down on the traction table.  They explained that I would get drugs in my IV that might burn, then I'd be out.  They'd place a breathing tube and then they'd position me with my foot in the boot of the traction table.

I don't even remember them giving me the drug.  I just remember being told, "you're awake.  Surgery is done!"  And groggily looking around for The Beast and asking "does my husband know I'm awake?"

I came out of surgery 30 minutes earlier than anticipated, so The Beast was not at the surgical center (I think they went and looked for him in the waiting room). But because he was with our 2-year-old and I couldn't really move or talk, it was decided we would wait until we were talking about me going home before my family came back.  Which was the right decision, of course...but I was so lonely.  I felt desperate to see The Beast - like somehow seeing his reaction to seeing me would verify that I was ok.

It also turned out that no one called The Beast to let him know I was awake - he just happened to see a nurse and she asked if he was waiting for someone.  That was over an hour after I was out of surgery! 

Anyhow, after I asked if my husband knew I was awake, the next thing I remember was seeing the nurse get a syringe ready (most likely of morphine) and quickly saying "can I breastfeed on that?"  She said the anesthesiologist noted I was breastfeeding and approved everything.

I was sitting up in bed, and felt like I was sliding down it.  The nurse said I sort of was, but when she went to out me at a different angle it hurt way too much.  Finally, she helped me bend my bad leg so my foot was flat on the bed, which (surprisingly) felt better in every way. 

After a whole bunch of drugs (morphine, Percocet, and Dilaudid are what I remember), the nurses started talking about me going home.  They called my husband back and gave him my discharge instructions, and included a video of my surgery!  I assume this is video from the scope end, and nothing external - if there is no cutting of my skin and not a lot of blood, I think I might watch it!

Anyhow, they then told The Beast to go get the car and they'd get me dressed and ready to go.  They sat me up and I immediately got nauseous.  A nurse gave me an anti-nausea pill to dissolve under my tongue and sat me in a wheelchair with a barf bag for the short trip to the bathroom.  I told her I was suddenly really, extremely tired and couldn't keep my eyes open.  "It's probably the Dilaudid," she told me.

She helped me get seated on the toilet and told me she'd be outside the door and to let her know when I was done.  As I was peeing (apparently they gave me a LOT of fluids in that IV), I laid my head down on my hands, which were on the bars I had used to help lower me onto the toilet. 

I'm not sure how long I was asleep before the nurse said, "you ok in there?"  And I woke up with a start and slurred, "Iwuz'sleep."  She said she'd thought so!

She helped me stand up and get my pants back on, and then I said I was going to throw up.  "Go ahead and sit down," she said.  So I sat back down on the toilet.  "Ha! I meant in the wheelchair, so you're not sitting on the toilet with your pants on!"  She helped me turn around and sit in the wheelchair, all while keeping a trash can in front of me.

About two hours after I'd come out of surgery, I was being loaded into the car.  Bean was at his friend's, so I had lots of room in the back seat next to A-Train.  And I was HUNGRY.  I hadn't eaten in over 24 hours, except for some graham crackers they gave me in recovery.

What I remember of the ride home was waking up with food in my mouth.  Repeatedly.  And then some instances of desperately needing water right this instant.  I had cotton mouth for 24 hours, plus my throat was a little swollen from the breathing tube.  I constantly felt like food was getting stuck in my throat.

I missed Bean all night. I was relieved to hear he had a great time at his friend's and went to bed there no problem, but missed his sweet face and his current "helpful hero" phase. He has been looking forward to "taking over" for me and doing things like bringing me my crutches and catching A-Train when he runs off.  Bean has been pretty darn sweet over the past day or so.  He wants to play Zelda all the time (well, he wants me to play while he acts it out next to me!), which is a blast and something I can do to hang out with him while I can't move much.  He can turn on the game console, the tv, bring me my iPod Touch (I'm using a walkthrough), and he even helped me get cereal and milk and a bowl and spoon out at the table this morning so I could fix my breakfast without bugging The Beast yet again.

Possibly more from the psoas release than from the rest, I have a lot of weakness picking up my leg right now.  So I am glad I kept up my upper body strength to some degree when I stopped doing much exercising - I am literally picking up that leg to get it on the bed, into pants, etc!  Getting dressed is like target practice right now - I drop my pants on the floor and then carry my leg and aim it into the pant leg!

In terms of pain, it's not as bad as I expected so far.  It actually feels better to put the foot down and bear the tiniest bit of weight when I'm getting around, rather than picking up that foot/leg and only bearing weight in my good side. Dangling the foot/leg on my bad side HURTS.  It just puts way too much pressure on my hip.

I am relieved to report that my "private area" (as the surgeon referred to it in our consult) does not appear to feel numb.  So far, I have numbness in the skin of that thigh, but I don't notice it until I rub it, and then it just feels strange.  It's likely I will get all or most of the feeling back - and I've said before that I would prefer a little numbness to the zinging and throbbing I had before.  So, otherwise, some pain and pressure, and so far fairly localized to the joint, which is more than I could say before as I got zinged all over my upper leg and even around into my back.  I backed off a little too much on pain meds last night and got more achiness in my back and a little stinging in my incisions (which are small, and there are three of them).

In general, so far so good.  I have physical therapy late this afternoon.  I'm kind of scared.  I hear it's pretty brutal because they want us weight bearing pretty quickly (my surgeon's PA and all the nurses keep saying "yes!  bear weight as much as you can!").  I'm all for taking the physical stuff slowly, because I want to get off the narcotic painkillers ASAP.

The narcolepsy sucks.  I'm definitely complaining more about that than the pain!

Wednesday, October 17, 2012

Kidneys versus Cancer

Ugh. I promise I will write up the insurance nonsense and about how surgery went. For now, I need to get these thoughts in one place so I can start making phone calls.

I am now on to determining risks and benefits of my treatment options for preventing overgrowth of bone (potentially caused by the surgery). I met with a radiation oncologist this morning. My surgeon and my nephrologist had both said to do radiation and not the less expensive and more standard treatment of Torodol (a non-steroidal anti-inflammatory drug, or NSAID). But radiation still leaves me with something like an 8% chance of the bone growth, plus an increased risk of cancer and, because I have a positive ANA (test for autoimmune disorder, totally non-specific) I have a risk of fibrosis in the hip from radiation. Oh and infertility (no more babies anyway, but the likely hormone disruption does not sit well with me).

Other treatment option is NSAIDs (class of drugs that includes Aleve, Advil, and Motrin to name a few brands), but they pose a risk to my kidneys and I am not sure if they are more effective at preventing the bone growth.

I need to find out- given the stability and severity of my kidney disease (currently very stable and not really very severe) - just how high the risk is of a week of NSAIDs.

And I'm not even sure if I have missed the window for the NSAID treatment because they would have started me on it *before* surgery. So I need to find out what the treatment protocol would even be...and fast!

Lots of phone calls to make - have to let radiation folks know by 8AM, as my treatment is scheduled for tomorrow.

Nothing is ever simple with a chronic illness- especially as a rarity even amidst the rare disease. If I were older, the cancer risk would not be as high, because it increases every decade. And the infertility thing wouldn't be a concern if I were already menopausal. And the autoimmune thing is the entire reason for the fibrosis risk.


Keep on smiling. Keep on keepin' on...

UPDATE:  Spoke to my nephrologist while waiting for a call from the surgeon's office.  He said a week of NSAIDs is fine and I should do that - especially if it's more effective.  I just have to get blood drawn two weeks later.  If there is a problem, he said 99% of the time the problem will go away when the NSAIDs are stopped.  However, I then talked to my surgeon's PA (she is an angel, which I will get into when I write up the insurance saga) and she said it's a 3-week course.  Pretty sure that won't matter, given the "99% of the time the problem will go away when the NSAIDs are stopped" info above.  It would be way awesome if this turned out to be the better choice all around.
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