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!

Adventures with a Little Tea Pot / Mourning my Morning Coffee

I had a consult with a holistic kidney doctor last week who gave me quite a few recommendations.  Some of the supplements I am going to run by my doctor before trying.  Some I'm a little weary of anyway.  I'm just not sure about taking melatonin up to the point that I get a "melatonin hangover" and then backing off to find the appropriate dosage.  That just freaks me out a touch.  Mostly I wanted to get an idea of the good and bad foods and other natural methods of helping my kidneys stay healthy. 

Most of the good foods I already eat and love...berries, cherries, apples, grapes, celery, garlic, yellow onions, red onions, green peas, cauliflower, grass fed meat (in small portions), organic blue corn, curries, ginger, lowfat yogurt, and green tea.  Mmmmmmm....garlic. 

The hard part is the foods I should avoid, and number one on the list is coffee.  If you know me at all, you know that every morning I can be found either 1) at my desk with a cup of coffee within reach or 2) on the patio before Morgan wakes sipping a cup of coffee and listening to the birds.  Now since the whole kidney thing started, I have made the noble switch to decaf.  Giving coffee up altogether...now those might just be fighting words.

Ok, we'll back up.  I am willing to do ANYTHING in my power to increase the odds that what I went through at the beginning of this year does not happen again.  There are studies that show coffee can increase proteinuria.  I will even admit that if I have multiple cups of coffee without drinking any water, I see an increase in bubbles...pee bubbles that is.  For the people who aren't sporting a knowing smile at the moment because you've never had the pleasure of spending time examining your urine in hopes that it will just look normal for once...more bubbles equals increased proteinuria.  It's just that I please want to have a cup of coffee in the morning.  I really like the taste of coffee with just a splash of cream.  It's good, and it is a taste I associate with both motivation and relaxation if that can even be possible. 

Some of you may think I'm crazy, but I am going to continue to have my coffee.  I will limit myself to no more than 1 cup per day with an occasional second cup only if separated from the first by a bottle of water.  So there is my vow.  Now I have to figure out a way to fill a couple more cups.  This is where the recommended foods come into play.  I've decided to give tea a go.

Green tea is the one everyone keeps telling me to drink.  I think if you like the taste of a fresh cut lawn diluted in some water, green tea is where it's at!  While I do get excited about rocks & soil, grass I prefer to smell rather than taste.  Besides, it makes me itch if I roll around in it.  I'm willing to do anything though, so I did a little research,  got a cute little red tea kettle, and ordered a few different teas.  You'll note there is a strainer. I meant to go pick up a tea ball infuser, but I forgot. I wasn't going to let a little thing like that stop my efforts at kidney therapy, so I pulled out the strainer, steeped the tea in a measuring cup, and strained it into my tea cup. 

Remember the grass comment? I mean it even looked like I was brewing up a cup of lawn clippings.

Yep, tasted like grass in a glass.  It's for my own good, right? Yes, good for me.  Ok, whining over.  I'm switching, I'm switching already.  Ummmm...yum? At least I know I like chamomile. 

Nah, Nah, Nah, Nah....Nah, Nah, Nah, Nah...Hey, Hey, Hey...Goodbye

Today was the last injection of Acthar.  I've been reading up on cortisol, you know, just in time to go off of this drug.  These injections are similar to the Prednisone I took earlier this year except that the Acthar acts one step earlier in the chain. I like to think about it like this...

 Prednisone from what I understand is cortisol.  You have to taper off of Prednisone, because you need to give your body a chance to start making its own cortisol after feeding it manufactured cortisol.  I was on the relatively high dose of 60mg per day, but even the little packet of Prednisone you are prescribed for a chest cold has a taper schedule.  Acthar on the other hand is an injection of ACTH (a hormone usually produced in the pituitary gland) which tells your body to produce cortisol.  Among many other things, elevated cortisol acts to suppress the immune system.  This is the reason I was prescribed Acthar.  It is an expensive one.  This one little vial represented 5 doses when I was at my max dosage.

Each month I received two vials which my insurance covered in full.  The cost of the two vials combined is $52,000.  No that is not a typo.  That would be $5,200 per injection.  Needless to say I couldn't have paid for the 4 months I was on this drug out of pocket.  Luckily I only had to do 2 injections per week.

I was also lucky enough not to get a great big moon face with this one.  I think it did help me gain back some of the weight I lost while swollen and on Prednisone which is a good thing.  Wait...what did I just say? :)

Just a little trip to the ER

As it happened, I got another virus.  I've had an upset stomach and a very mild fever since a few days before I went to Mayo.  Actually, my temperature was the only thing that wasn't normal when I was there.  I finally felt bad enough to take a little trip to the ER.  One benefit of being on immunosuppressant drugs was being sent to a smaller, private waiting area.  I was thankful not to have to wait in the usual holding pen with the dozen other patients and their germs who were there with me that evening.  Boy was this a familiar sight.

Notice the giant wad of self-adhesive bandage wrapped around my right hand.  The superstar nurse decided to draw one of my blood cultures from a vein just below my pinky joint.  I have a nice little bruise to account for it.  At least he did the other further up my forearm and then used the hole for my IV.  For the reduction in the number of holes he put in my arm, I will forgive the bruise.  Two bags of fluid, 2 fresh holes in my arm, $100, and 5-1/2 hours later, I was released to go home with a probably just a stomach virus.  My numbers all looked pretty good...no different from the previous week's numbers at Mayo with the exception of a slight increase in my BUN.  That is pretty typical of when I get dehydrated.  I'll chalk it up to good times while being immuno-compromised.