Saturday, July 25, 2015

It's just hair........and a sprinkle of other updates

The previously mentioned missing spark came and went these last few days. Its hard to explain but there are days where I feel fine (with or without energy) and days when I feel terrible (with or without energy).

rockin the shortdo
bananas and lysol

Ola has done a great job making sure I stay hydrated, pain free and without fever. The neck catheter wound has really been bothering me so she makes sure the pain level doesn't get out of control

I feel like the spark was back today (Saturday) as can be witnessed in above "lysol" photo. Had a visit with Eleni at the hospital today. She is on Day +4 of transplant and may be discharged anywhere from 4-7 days from now. I get admitted Tuesday so we may just miss each other inpatient. We forgot to take pics of the visit....but we had a lot of laughs. She is my Greek sista from Jersey and she is hilarious. She is fighting MS like a boss.

Sorry E, I stole a picture from your FB page! Her and her mother Helen are precious to me

Eleni and I made a joke about the fact that my hair has hung in strong, I'm now on day 15 with no sign of it bailing.......not 30 minutes later did I run my fingers through it and get a handful. So Ola and I decided to have some fun a dye it my CIDP foundation colors before we shaved it off.
my hairdresser (Ola)
GBS/CIDP Foundation colors
i kinda like it
cutting started

love the hawk

baby steps in fun

Ola leaves in the morning. Thankful she took time away from her family to help me out. Looking forward to my big brothers arrival tomorrow. A man I so look up to and am honored to be related to. I am so humbled he is also taking time away from his family to support me. I look forward to being more active with the beautiful niece and nephew he gave me, once I'm back on my feet.
thanksgiving 2013 - before diagnosis

The support thus far has been overwhelming. Whether in person, by phone, text, or email I get emotional just thinking about it. Thank you all for the love, prayers and support. The posts may become more sparse as I start the inpatient journey, but will do my best to keep the updates coming.

Upcoming schedule:
Monday: PICC line placement in my arm. Finish packing for hospital
Tuesday: 7am admit to Prentice, until release date mid-August.


  1. Thank you Ola for taking such good care of our precious cargo. Loving and laughing at the fun you're having with your hair. Bit worried about what you're up to with the Lysol, but you're an adult so everything should be ok. Right? Well, with you, who knows.

    Cleo is missing her Beuford update so get him to lift a flipper and send her a turtle smile - that'll shut her up for a while.

    As always, gentle hugs and much love gorgeous girl. YOU'VE GOT THIS. :)

  2. Cheehoo!!! Ativan blue is a great color on you...hope you're still smiling in the morning and don't have a mohawk hangover.

  3. Love love love.....what a great time. I hope I paved the way for silly behavior. This is amazing. Glad to see your spunk and joy of the happiness that is now. Live life for the moment love. Miss you.

  4. You are a fighter! You'll be in my thoughts and prayers.

  5. Lysol and bananas those are my girls fo sho

  6. Love to see your spunk even with all you are h oing through. You,sre amazing!

  7. Humor helps! So glad you made lemonade outta lemons. Much love and will see you soon!

  8. Humor helps! So glad you made lemonade outta lemons. Much love and will see you soon!

  9. Humor helps! So glad you made lemonade outta lemons. Much love and will see you soon!

  10. Love the hair! It's super sassy!!