Face (Photo of the day 5/22/13)

What TV? You ain’t watching no stinking TV!

New feature(s)

Here at hopeforheather there’s going to be a new section called “Photo of the day”.  I’m not quite sure yet how it’s going to come into play though.  One of the neat things about this blog is how things have evolved over time, I guess in the same vein as how I have evolved since my surgeries and diagnosis.

The way I think it’s going to work is that as often as I’m moved, I will post a picture and title, Photo of the day.  I think it’s going to be things that move me, things I’m grateful for, things I find beautiful, things I find enjoyment in, etc.

I have thought these last few weeks how I want to be more to my life than hospitals and medical appointments.  Sometimes, though, there just doesn’t seem to be!  Sure, I enjoy the occasional H.O.T. roll or salad from a local pizza place (which are 2 treats to me), the daily struggles of Cowden’s Syndrome and Lhermitte-duclos pull at me.  All. The. Time.

There are other things in my life that need to be developed (personal development, obvi) and why not write about those parts of me (my life) as well?  While dealing with 2 rare diseases on THEIR terms is rocky at best, there are other things in MY life that I need to write about, so to give them the respect they deserve as well.

I have a category on “Volunteering” – but haven’t written too often about that.

I also have a “Church” category.  I think it’s about time to work on those sections and represent them!

Pinky #2 (Photo of the day 5/21/13)

 

New gym gear

One of the great things about owning a blog is that I have my place to vent. To scream, yell, cry, or anything else that I need to do. This is my place. And it has been so healing to come here as often as I need to.

This morning didn’t start well. Tough appointment and tough things on my mind as of late: polyuria, weight gain, mastectomies, fatty livers, high cholesterol, no job, running out of money, just to scratch the surface.

I try to stay busy.  I also write.

And I go to the gym. I need to keep busting my tail HARD because if I have to go back on the medication I’m going to be in quite a little pickle.

Tonight I felt stronger and more empowered wearing my shirt.

THIS!

If you bet on Cushing’s you would be wrong

My primary doctor says I do not have Cushing’s Syndrome.  So, while of course this is GREAT news, I’m still uber-frustrated.

I was hoping that was the problem, since I didn’t respond to the Desmopressin.  After 5 days I felt no difference on it.  And once I stopped the protein drinks (that I sometimes would have 2x a day since I’m working on cutting calories) my symptoms did get markedly better.  I thought I was in the clear.

No dice.

Guess who gets to do yet another 24 hour urine collection?  Oh yah.  This girl.

It all came crumbling down this morning with Dr. B.  I am so frustrated.  I’m not losing weight.  I work out 4-5 days per week, my cholesterol is creeping up, I mark my calories on an app on my freaking iPod.  I feel so much pressure about needing to remember which tests needs to be done when, and what if I forget to remind one of my doctors that it’s time for X test?  Basically it does go back to my primary, and thankfully we kind of hammered most of that out this morning.  Between the oncologist who is ONLY CANCER SPECIALIST (which I do not have thankfully [!], so what am I allowed to ask her then?), and my endocrinologist, and the neurosurgeon, and the neurologist, and my primary…there are many irons in the fire.  My fear is that with all these irons in the fire, something (or someone) is bound to get burned.

Me.

That’s a lot of pressure.

Plus, I’m peeing all the live long day.

I’m soooooooooooooooooooooooooooooooooooooooooooooooo tired today.

So.

I’m going to the gym.

More soon.

Place your bets

Could it be Cushing’s Syndrome?

Or…

.

.

.

.

are we still looking at Diabetes Insipidus?

I thought I was done with D.I.  I haven’t written a post yet about the protein powder and the polyuria.  That will come.

Found out today from Dr. S that we’re not in the clear yet.  The one blood test I have waited for over a month “Argin Vasopress” (Plasma ADH I think) was <0.5.  Undetectable.

This wasn’t the news I was expecting.

Angelina on my mind

I have a lot to say about her decision.

And I have a lot to say about how HER choice affects my choice.

As I told someone today, “I’m very uncomfortable.”  And I was a bit so before this news came out.  [Ironically, last week my oncologist asked me where I was on the prophylactic bilateral mastectomy.  I told her I wasn't "there" yet.]  Now?  I’m much more uncomfortable.

I want everyone to know that BRCA is not the only genetic mutation.

There are others.

I know, because I happen to have one.

It’s called the PTEN gene (Cowden’s Syndrome) and my lifetime breast cancer risk is 85%.

We deserve to have our voice heard, too.

I commend Angelina for this proactive choice.  And while I wish I could talk to her about her thoughts that led her to this point, I sure would LOVE to pick her brain about my situation.

To be continued…

Pinky (Photo of the day 5/14/13)

Flowers have never stopped me before, but this one sure did today. PS, I love how the edit turned out.

5 Top Reasons Why My Mom is Great

(There are in no particular order and a bit late for Mother’s Day.)

1. I’ve learned so many things from Mom but the main one is that she’s always right (this took me 40 years to figure out – but I finally got it!)
2. She doesn’t flip out too much anymore when I buy myself a Dooney & Bourke bag for my birthday
3. Mom doesn’t make me garden with her (This is a BIGGIE!)
4. She doesn’t complain (much!) when I ask her to check the incision to make sure it’s continuing to heal well
5. AND last but not least…she lets me live here.  And helps me in numerous ways if I need it (too many to count!)

Thanks for everything Mom. I couldn’t have made it this far without you!

Queen Wilhelmina & Juliana (Photo credit: Wikipedia)

“Kids say the darndest things”

(Mom just said that to me so I decided to use that as my post title.)

When my schedule permits I go to my nephew’s Kinder class to volunteer.

It’s the best.

Really.

Besides all the “Kinder Love” they give to me – I hear the greatest things in this class.

Get ready to chuckle…

(As a student ran back in from recess with something obviously URGENT on her mind), “I FORGOT MY HOT CHEETOS!”

(During free choice), “But first you have to cry, and that’s how we know.”

(I was doing some one-on-one work with each student reviewing plane and geometric shape patterns.  When I asked a student what one shape was…) “A cube.  A big, giant, cube.”  For the record, none of these shapes were giant!  But then again, maybe when you’re in Kindergarten a lot of things are giant to you?

I don’t think I can accurately express how much I enjoy going to my nephew’s class.  Besides any other time I get to spend with Nephew #2, these kids in his class are great.  I mean, really, really, great.  For a few hours on Friday I was able to forget about breast cancer risks and whether or not the brain tumors are stable.  Great way to spend my Friday morning.  I highly recommend it to all!