Saturday, May 28, 2011

Must EVERY sinus infection turn into this?: FSGS Sucks

Seriously....today, I'm feeling low.  I had a terrible night's sleep because of the pain in my left eye.  I thought I caught this sinus infection early enough to avoid this, but apparently not.  I'd take stuffiness (which I currently don't have) over the incredible pressure and pain that is in my left eye socket.  I couldn't lay on my left side last night, which is the side I ALWAYS sleep on, because of the pressure.  By 5am, I had to get up and take more Tylenol, then I went back to bed and put my headphones in to try to take my mind off of the pain.  I started out with a meditation app on my iPhone (Relax&Rest), but the voice of the person talking hurt my head, so I went back to just music.  I really really like the app "Altered States".  It's a no-frills app that uses music or nature sounds plus binaural tones.  I chose "dreamy sleep" and it worked like a charm.  In fact, I think it's the ONLY thing that could've helped me get back to sleep.

So that's my whine for today.  My little sister is here now staying the night, which is GREAT for us because she and Izzy play together (which, selfishly, feels like a mini-break for me ;).

Friday, May 27, 2011

Another day, another issue : FSGS Sucks

I felt like I had been hit with a brick when I woke up this morning. No, literally....my left eye socket was so tender to the touch that I knew it could only mean one thing....SINUS INFECTION. Great. Here's what happened the last time I had one, which is why I was so worried. Luckily, I was able to get in and see my PCP, Dr. Wallisa, before the holiday weekend. I got some drugs and am hopefully on the mend very soon.

I also got the biopsy report from my colonoscopy, and it appears that I have collagenous colitis. I have no idea what that means exactly, but from my cursory review of Google, it's something that's going to be hard for me to treat. There are lifestyle changes (i.e. Food) and drugs (prednisone being one) that make me want to cry.

I don't want to be on prednisone for two big reasons: it sucks sucks sucks, and it would negatively affect my ability to be in the clinical trial. And the food part seems to be impossible, partly because I have no willpower, and partly because at this point, I have no idea what I'm even supposed to eat. Some of the things it says to restrict are my favorite (dairy, raw fruits and vegetables). High fiber food (which keep me fuller longer) are also not advised. In order to do this, I need a full-time nutritionist and chef. Seriously...the amount of mis-information out there is staggering. There are a whole lot of people that claim going gluten and allergen free "fixed" them. I don't buy it. There aren't a whole lot of things that are that enjoyable right now. And I know that the dietary restrictions are super-strict when going on dialysis, which I'll have to do at some point. So I sure as he'll wanna enjoy food while I can.

Dear God, I'm becoming one of those people...you know, one disease that manifests into a host of others? Hmmm..the human body...so strong and yet so fragile.

Thursday, May 26, 2011

How awesome is this! : FSGS Sucks

I got a friend request on Facebook today from someone unknown to me, but I checked the person out and saw that she was a naturopathic physician, and so I accepted.  Then I saw that she had shared a post from the NephCure page, and here's what it was!!!

Greg, the PR guy from NephCure, informed me that they'd be writing a piece about this blog, but I didn't expect this!  So well written!  This has made me so happy today!!

Which is great, because I'm sad because I miss my pretty little summer sandals.  At this rate, there's no way in HELL I'm gonna be able to get those things on my feet.  I can't even get on a pair of shoes I bought 3 weeks ago (on a day when I THOUGHT my feet were swollen).  And they're so cute!  I'm starting to wonder WHAT kind of shoes will fit later?  And when I see pregnant women with swollen feet, I'm jealous because there's will go away AND they get a happy little baby to boot!  But me?  Mine don't go away, and all I get right now is to bitch about it.  dammit.

Wednesday, May 25, 2011

Woohoo! Randomization and some other crap : FSGS Sucks

I contacted my clinical trial study coordinator, Barbara, this morning, and she let me know that my baseline labs are in and they're hoping to randomize me by the end of this week.  WooooHOOO!  So, depending on what arm of the study I'm on, I'll be able to begin the actual trial next week :)

She's also going to send me my latest lab results to me tomorrow.  That is one of the biggest personal benefits of this trial for me, in that I'll be able to constantly monitor my condition to see if it's changing.  I have very little control over all of this, but knowing my numbers gives me some sense of peace.

Barbara also told me that she shared the blog with the trial doctor at Cincinnati (Dr. Goebel) and some other physicians, so that's GREAT!  The more people that read this, the better.  I want comments.  I want feedback.  I want a community!!!!

I'm so much more motivated THIS time around.  The first time with kidney disease, when I just thought I had MCD, was awful.  Not from the MCD, but because of the side effects of prednisone.  I wasn't prepared at all, and it showed in my appearance, my work performance, and my home life.  I feel pretty lucky that my husband didn't pack up and run because I was pretty unbearable.  I had a LOT of anger....about EVERYTHING, and I handled it quite poorly.

THIS time around, I did a lot of prep work before I took that first awful prednisone pill.  And even though my diagnosis has changed to FSGS, and none of the meds have worked, I STILL feel like I'm in a better place, and I think that's because I've been building my community.  I've had changes to talk to other people like me, and the first time around I didn't even think any existed.  I have a community of women on Facebook that I LOVE...love the interaction, love the commiseration...just love.  There's also the people on inspire.com who have been a big resource for me.  I've got a gazillion places I go (ok, maybe not a gazillion, but definitely a lot) to read, learn and share.  Social media has been one of my biggest friends during this awful time.

I want to share my story with anyone who'll listen.  I tell EVERYONE I have a kidney disease....for the sympathy (although sometimes it's nice on a day  I feel crappy) but because people are so surprised, and then they start asking questions.  But I also want to hear other people's stories, so please, if you read this and you want to share something, PLEASE DO!  Comment, let me know you're story.

I certainly don't feel the need to be positive every day, as you've seen.  I'm ok if I have a bad day, but I also know better than to wallow in it too long for fear that it'll swallow me.  And with that said, time for a little wallow.  I had ankles!!!!  Well, I had them for a very short time...mostly Monday afternoon and evening.  No idea why they came back, but it was AWESOME!  But today, the swelling has been horrible!  I knew when I hit the floor this morning getting out of bed that it was going to be bad, but this is the worst so far. 

The swelling never looks as bad with shoes on
But then I take the shoes off and it's obvious.

 We had severe weather warnings at work, which meant a trip to the basement.  That wasn't an easy walk down 5 flights of stairs in these damn shoes.  I was sooo happy to be home so I could take my shoes off and put my feet off.  That dream was short-lived because we've had 2 or 3 tornado warnings so far tonight (waiting for the nth round right now) so I've spent a lot of time on my feet getting stuff together, trying to cram in a dinner, and all around pacing between the front and rear of the house looking out the windows.  THAT has made my feet incredible large and sooo sore.  Even the bottom of my feet are swollen, and all of this pressure is crushing the toe that I broke earlier.  So now, I'm doing a whole lot of this:

Lunacy

So far today, I've read the following:

Cereal and bread are the biggest heart and kidney risks
If I just eat organic, I can prevent kidney disease
And, my favorite, baking soda cures kidney disease.

Why am I writing about this?  Because I think it's lunacy, and borders on irresponsible.  I never realized that I'm an anomaly...meaning an informed patient.  I can't tell you how many doctors (ok, ALL OF THEM) say, "You're a smart, educated, obviously informed patient".  Nice to hear, yes, but makes me realize that, if they feel the need to comment on it, then it's obviously a rarity.

Which brings up the irresponsible part.  Now don't get me wrong, I believe we're all responsible for our own actions, but I also believe that there are a lot of vulnerable people out there, and those with chronic conditions may be more so just due to the fact that their (our) illnesses do not have a defined duration....an end point...a light at the end of the tunnel.  They are always there, and sometimes that weighs heavily.  And that heaviness sometimes makes people desperate, or willing to try ANYTHING to get better.  Which is why I get so damn frustrated when I see these headlines, or see people mentioning them on Twitter or Facebook.  Most of these point to sham websites, or people trying to make a quick buck off of the weak or uninformed.  I know there's nothing that can be done about it, but I can still be pissed, can't I?

In very few of these articles is it ever mentioned that one should consult with one's doctor before trying anything.  Why????  Are they afraid that the doctor's are going to be "on" to them...figure out that they're full of shit?  Whatever...it's just wrong.  Every person with a chronic illness should have a true partnership with their doctor, one that is focused on helping and healing, not trying the latest crackpot solution out there.  I firmly believe that I won the lottery with my doctor.  We can have honest, frank discussions about my options, I feel completely comfortable to disagree and even get a second opinion if I feel the need to, and that is PRICELESS when dealing with this damn disease.  I may even be their most frequent caller ;) but I don't care.  I don't feel the slightest twinge of guilt when calling anymore, because if I'm not an advocate for myself, then who will be?

Ok, rant over.  You can go about your daily business :)

Transplant / Living Donor Info for me (edited)

I wish I would've had this post ready because I had so many people reach out to me after the last one that wanted to share my info.  I&#...