Because I Can

Because I can...and so I did. One week ago today I ecstatically crossed the finish line after completing Tough Mudder Dallas 2013. I survived 12 miles and 25 obstacles with names like electroshock therapy, warrior carry, Everest, devil's beard, cliff hanger, article enema, cage crawl, boa constrictor, mud mile, electric eel, glory blades, and Berlin Walls. If you've never heard of it, look it up! It is a team oriented endurance challenge that supports Wounded Warriors. To give you an idea of what it is all about, the pledge you say before crossing the start line (which requires scaling a wall to even access) states, "as a Tough Mudder I pledge that I understand that Tough Mudder is not a race but a challenge, I put teamwork and comraderie before my course time, I do not whine - kids whine, I help my fellow mudders complete the course, I overcome all fears." It is a truly inspirational and just downright cool experience complete with war paint, face tattoos (temp of course) of Leave no Mudder Behind, and exuberant shouts of OohRah!

So why, you ask, would I put myself through such torture? Because I can. Because just shy of two years ago I couldn't even bend my knees. Because I gained 70 lbs of water in 3 months while my body slowly ate away at 25lbs worth of muscle mass. Because I couldn't stand for more than 10 minutes without nearly passing out or having water seep from the tiny tears forming in my legs as the skin was stretched so severely that had literally reached breaking point. Because I was so tired that I needed a nap after taking a shower. Because in 3 months my life went from perfectly normal to a nightmare of kidney failure, extreme edema, high blood pressure, and uncontrollably high cholesterol. Because a freak disease took away my quality of life and left me reeling in the aftermath. Because while FSGS took 3 months from me, it did not take ME.  Because I fought back and I won. Because I could. And so I did. 

January 2012 was a dark time in my life, but it proved to me that I was stronger than I ever imagined. And now less than two years later I accomplished something that was physically harder than anything I have ever done in my life.  OohRah!

 

Warrior Carry

Mud Mile #1

Mud Mile #2

Concentration on the Funky Monkeys.  Don't let it fool you...I promptly face planted into the water!

This 20ft drop scared the crap out of me!

Even after all that...we were all smiles!

Cold is an understatement!

Made it across Just the Tip!

All smiles!  And some squinting to try to help the mud out of my eyes.  Finding a clean anything to wipe your face was a luxury!

Tagged!

Berlin Walls at 10 ft

Cage Crawl...another mind over matter

Just downright dirty!

 

I can't seem to arrange these, but you get the picture.  Mud, miles, smiles, and a whole lotta fun :)

Round Two

I was pretty bummed the other week when I started noticing a relapse in the works.  As I said, I was pretending to live in some alternate reality where none of this mess had ever happened.  I had stopped being strict with my sodium and sugar especially over the holidays.  So then when I shot up to over 600mg of protein loss in a matter of 10 days, it was back to reality.

I started back on 6mg Prograff and 40mg prednisone on the 15th, and by the time I did labs at Mayo on the 23rd, my protein had already dropped back to 50mg for a 24hr clearance.  That would be 15mg LESS THAN my clearance during July.  WTH!?  I talked with Dr F on Friday at my appointment.  It was good timing as it was a 6 month follow up from the summer.  He was pretty excited that I'd shown such rapid improvement, and ok...so was I!

So he now thinks my FSGS is behaving more like MCD or steroid sensitive FSGS.  I guess that means my FSGS has multiple personalities.  Last year around this time we discovered that it was steroid resistant when the little improvement I'd shown following acute kidney failure came to a screeching halt and reversed.  That sent me down the path of my kitchen sink therapy of plasmapharesis, Prograff, Cellcept, and Acthar while tapering off the prednisone.  Dr F at Mayo and Dr K here both think that I caught this relapse super early, and this is why we whipped it back into shape so quickly.  Score one for my obsessive compulsive dipstick checking, shinbone pressing nature!

I am back in full remission.  Just like that.  Nine days, and it turned itself around again.  This time without having to deal with the catheters and craziness.  I have a new taper plan, and Dr F thinks it is likely I will relapse again when I reach 2mg of Prograff, but he would like to try one more time.  I'm coming off the Prednisone at 10mg per week and then 2.5mg per week until I reach 0.  If I'm still at negative protein loss, I'm going to hold steady on full dose Prograff for two months and then taper again at 1mg/month until I reach 4mg.  This is 1mg more than the lowest dose that held me in remission.  By this time I will be headed back to Mayo for a 6 month checkup.  Dr F is going to make a decision at that time concerning continuing to taper. It's not optimal to stay on the Prograff long term.  It can become nephrotoxic which would sort of defeat the purpose of taking it in the first place.  Talk about an oxy"moronic" circumstance.

There is a drug called Rituxan that has been shown to hold people with both MCD and steroid sensative FSGS in remission long term without the need for additional medication.  This is the route that Dr F feels we are headed toward to keep me there.  I have a lot of reading and research to do on the uses and side effects of this drug, but I do have a friend who has already done the two infusions with very positive results and little to no side effects.  For right now, this is on the horizon but not in my immediate future, so I'm going to sit back and relax, enjoy the reprieve from my setback, and stay on track with diet and exercise to remain as healthy as possible.  The exercise isn't so difficult.  I think I'm as strong as I've been in over a decade.  The prednisone food cravings are the worst!  When I start to eat I swear I feel like a ravenous animal!  We will see.  If I can manage the taper without gaining too much weight, I'll be a happy person :)

Reality Bites

I think I have been in La-La Land for a few months...ok since around May.  My complete and utter turnaround following some intense plasmapharesis back in April made me feel invincible, like this whole ugly mess was a part of the very distant past with only the stretch marks along my calf muscles to remind me of the horridly obscene swelling that wracked my body.  I've been living in denial as I cheerfully stated "discontinued" during my ever dwindling list of medications at doctor visits.  My numbers continued to get better and better as I slowly tapered from 4 to 3 to 2 to 1 immunosuppressant.  Then I continued along and made it to half dose of my final med in December and got the call before Christmas Eve that my latest set of numbers showed protein loss of 12mg!  To put this into prospective, I peaked at 28,000mg, and for this test anything below 30mg is T-totally spot on normal.  It is amazing how wonderful the word normal can feel once your life as become anything but normal.

Then the start of the New Year rolled around, and I could tell that something was a little off.  I got a little sinus infection that wiped me out for two whole days and left me feeling drained the rest of the week.  Then I noticed that my boots weren't fitting quite right.  I checked, and I'd gained 5lbs in just a couple days!  Talk about flashbacks to a really bad trip.  I panicked, failed an at home dipstick, and stopped by the lab first thing the next morning for some real numbers.  I had shot up to 208mg of protein between Dec 19 and Jan 9.  I doubled my current dose of meds, waited out the weekend, and headed back to the lab on Monday.  No joy...now I was up above 600mg.  Just like that and I'm back on 6mg of Prograff and 40mg of Prednisone.

I'll admit that I buried my head for a day or two and felt quite sorry for myself.  It is time to move on though.  I have chronic kidney disease, and that is the reality of the situation.  While it would have been wonderful to go directly to the drug free phrase and forget this all happened, it doesn't look like that is going to be my route.  And honestly I'm ok with that.  I've knocked it down once, and I'm ready to do it again.

So here I sit...back to reality as much as it sucks.  Just keeping on keeping on...

What is normal anyway???



I am dragging...and limping...and hurting tonight!  I think I've overdone it a wee tad bit.  I know I'm in remission and all, but I suppose it is still possible to overdo things (?).  I think that's normal, but then again I'm not sure I've exactly figured out what normal is supposed to be.  I'm just now getting back to work full time on a somewhat consistent basis, and last week was a pretty big week for me being in the office every day as well as having something going on every night of the week.  I really wanted to get back into the gym after being sick and unable to go.  I think I ache as much from being in bed as I do from physical activity.  So gym...check.  Morgan's first night of a new ballet class (which actually turned out to be a tap-ballet combo with the first night being tap - whoops)...check.  Out for dinner for a friend's birthday...check.  Fall carnival at Morgan's school...check. 

Our little under the sea fairy

A what was I thinking 730 parent-teacher conference at Morgan's school to work to an after work appointment...check.  Race for the Cure at the butt-crack of dawn on Saturday morning...check.  For some reason I decided to jog even though I haven't gone jogging since I got sick.  Again what was I thinking.  Maybe these meds are affecting my brain more than I though.  Take Morgan to the park...check. 

I love when the slide does this to her hair!



Make Halloween cupcakes & go to a birthday party...check. 

She sings everything instead of saying it...my friend Shanna will vouch that I totally used to (still do actually) do this. 

Take Morgan to the zoo...check. It was a great day for the zoo, and I wouldn't take it back for all the aches in the world.  We got up close and personal to the tigers, zebras, and elephants.  And Morgan was doing a great job practicing her smiles for the camera.  Happy little girl!



The closest one of the Sumatran Tigers have ever been while there!

Introducing Sprinkles the horse to the giraffes

According to the guide on the train once, this species of zebra are actually aggressive.  Who knew zebras could even be aggressive and mean?!?





I just love her!

I digress...so back to this aching thing.  Here it is Sunday night, and my left knee is killing me.  My Achilles behind both feet are killing me.  My back is killing me.  Either my 30s are catching up quickly, my 40s are coming early, or my body just isn't really ready for the old normal.  Then again, maybe this is my new normal.  I guess we'll see.

A walk for a different cure

Fall is notorious (said in my head like no-no-no-notorious...as in the B.I.G) for fundraisers.  I've participated in a few walks and 5Ks for various causes, because well...that is the right thing to do.  You do what you can to help people who need help.  This year is no different.  I'm participating with my company in the Komen walk next weekend.  No big deal.

Well as of a few days ago, I've learned there is a new walk in town that is a very B.I.G deal - see Biggie Smalls reference above - to me and my family.  NephCure is a foundation that supports research to find better treatments, the cause, and hopefully one day a cure for FSGS and Nephrotic Syndrome.  That's the story of my life this year...FSGS and Nephrotic Syndrome.  I used to be a lover...now I'd definitely define myself as a fighter because of my run-in with this devastating disease.  Actually I technically am a fighter considering I started Brazilian Jiu Jitsu this morning, but we'll save that for another post.

Now if you've read any previous posts, you'll likely agree I've been incredibly blessed in my battle with this disease.  As of this beautiful 20th day of October, I'm completely in remission.  My protein loss is 34mg per day.  My kidney function is 100%.  My labs are completely normal.  You'd never suspect my immune system attacked my kidneys which in turn retaliated and tried to take my life!

I've learned during my brief experience with this disease that I'm one of the fortunate few that received the education and got the treatment from the specialists who could help to get me where I am 10 months later.  There are so many people that go undiagnosed or who don't have the opportunities that I had.  The worst part...this stuff usually attacks children. 

Ok, I'll stop with the sappy tugging of the heart strings.  All I'm asking is that you'll consider taking the time to look at my team page for the NephCure Foundation's Oklahoma Ghost Walk 2012 and donate.  To keep it simple (remember K.I.S.S. in school?) I made the team name The Bad Bad Beans.  We were unable to put together a physical walk this year but did not want to give up on 2012.  A ghost walk is a virtual walk where you can go online and make contributions to support something very near and dear to my heart...well ok to my kidneys but you get the point.  The link below can take you to the NephCure page where you can find information about the event in OKC as well as the foundation itself.  The "walk" is open until the end of November.  Anything you could contribute would be greatly appreciated.

NephCure Foundation's Oklahoma Ghost Walk 2012

I'm part of a committee that is working on 2013 and 2014 benefits for NephCure.  Stay tuned for an actual walk or maybe even a golf tournament!