Urgent

8:30 am tomorrow morning I have my urgent CT scan. I feel how I did 9 years ago during that week’s time between the brain tumor diagnosis and the first craniotomy.

Trying to read. Trying to distract. Trying to stay relaxed and as calm as possible.

Rare Disease Days of Yore

LOL, I don’t know. 🙂

So, what was it about this RDD that was different? Why didn’t I feel as empowered as years past? Why didn’t I find something to do? Like in 2015 when I organized a fundraiser at a local gym? Gosh, I wish I knew. I don’t want to lose any steam ever on being a voice for Cowden Syndrome and Lhermitte-duclos Disease. But what gives? I really need to try to figure that out.

I have a hunch but will do some deeper pondering about it.

Yesterday I spent a very lazy day at home. My family was here, and we were watching old VHS movies from my high school days (very surreal!). I found myself just doing what I could to stay present. Remembering what I could from high school. Seeing and hearing my Dad on a video was such a shock and joyful moment at once. (He’s passed away)…

Even as I am writing this, I realize (finally?) that any day can be Rare Disease Day and I have the control! I suppose one of the things I am grateful for oddly enough post-diagnosis is that I have found my voice to advocate for myself. I never knew I needed it; but here we are and I CAN DO IT.

I didn’t think about anything health-related yesterday which is pretty damn awesome in my book. No brain surgery or hysterectomy memories, no “day-dreaming” of what my life will never be.

I just was.

With my family.

Safe.

And, I guess I couldn’t hope for much more than that.

Happy Sunday to you and yours.

Hope

I just finished my EEG and had one of the most spectacular technicians ever! She was awesome. Period. She is 100000000% in the right career field. She gave me hope that not all medical people suck!

While the test was rough (the flashing lights part was no good) she made it “less rough” (90’s R & B can make anything a whole lot better!) PLUS she listened to me.

Thank you Ms. P!

Financial status 2019

Hi there.  It’s been a while; I’m still here.

I think I have written many times about my toxic financial situation post diagnosis of Cowden Syndrome and Lhermitte-duclos Disease.  For the sake of time, I’ll try to snapshot it here:

  • I’m in debt over $20,000 on my credit cards as I have been forced to live on them, since I can no longer do what I once did for employment.
  • I have kicked around this idea for months, the bankruptcy idea.  I have prolonged it as long as I could because my ego and credit score. 🙂
  • I also owe over $35,000 in student loans (you know, the whole career thing I had planned before having 2 brain surgeries, et al.)

I called one of my creditors this morning to find out about any hardship programs they offered.  Currently, my monthly payment is $395.  Guess what program I qualify for with them?  A 5 year program with a monthly payment of $370.

Huh?

Am I missing something here?

So, bankruptcy is next.  I have an appointment the end of February to see an attorney to just get this done and over with.  (NOTE:  The filing fee for bankruptcy is $1875.)

So, if you happen to see or hear from me and I am riddled with anxiety, or so depressed I cannot get out of my bed, or I’m distant or just seem off – please know it’s because life is a lot right now.  It is literally costing me money to live – and I am going deeper in the hole every moment of every day.

Pretty grim right now for me, tbh.

If you happen to see me on Twitter and see my posting about my GoFundMe or my Teespring store, would you do me a solid and share then for me please?

Thank you.  Until next time.

Daily Prompt [Infect]

The Internet is a crazy thing, isn’t it?  You can stumble across all sorts of information if you’re not careful.  Without boring you to tears, I just found out someone I “know” got married last summer.  Nothing but the best of course to him and his bride…but I had this super secret place in my heart that…you know…welp….I hoped beyond hope for fate to step in…and you see where I am going with this, right?  This knowledge has now infected my heart and hope tonight.  😦 Blergh.

Ugh.

If I didn’t already know I am very lonely, I sure as heck am aware of it now!

Daily Prompt [Believe 10/9/17]

I believe in the person I want to become.

I don’t quite see her, yet.

But, she’s near.

 

PLEASE NOTE:  Don’t forget to check out my teespring store and see ways you too can help advocate for Rare Diseases.  ❤ thank you!

Daily Prompt [Recreate]

There are several moments I wish I could recreate:  my high school graduation; graduating from college; the day before my Dad passed away; a trip to California Adventure the beginning of July 2011 where I watched World of Color, and those are just to name a few.

I can absolutely 100% state that there is one moment I wish I never experienced, nor ever wish to experience again.