I truly believe, this effort really isn’t about me it is about all of the small to larger gestures that people known and un-known do to get me through each and every day. Each daily step forward will lead to a victory, onward and upward!!!
Dec 11th, 2018
Thank you for all of the phone calls, texts, emails and letters. This trying time is so much better with such support and love in my life.
Dec 4th, 2018
I woke up this morning irritated, in pain and exhausted from yet another night in the ER. My day continued to be frustrating and I was in an angry funk. And then my phone began to ring. I spent a few hours distracted from my current situation having some lovely uplifting conversations with two wonderful and loving ladies. I hope you know who you are!! Thank you for listening empathically and uplighting me. I gave me great perspective. I am now smiling. Thank you!!!
Oct 13th, 2018
I want to express my graditude to the Transplant House of Cleveland. We are fortunate to live in a supportive community close to Clinic. Last night we were lucky enough to attend the yearly gala. It was a celebration of all of the wonderful things and lives transformed by this unique organization. It was motivating just to see people out supporting THoC and therefore the residents of the community. I will be forever grateful for this support. It is just a reminder that when this chapter of my journey ends it will be my turn to give back. I can’t wait!!
Also a special thank you to the anonymous donor that paid our October rent!!! What a special gift and peace of mind. The financial burden is on going and real with no end in sight. A million thank yous!!
Oct 6th, 2018
Today nothing gave me great joy more than debating sports, baseball with my 88 year old Grandmother. I am so thankful for her and the passion for sports that she has passed on to me. We love to argue about who is better, what team will win, who is a flashy hot dog and thinks he is better than he actually is. Thank you Grandma for the debates and conversations both sports and non sports related. I only can hope my mind be as sharp and my passion as deep as yours when I get to be your age. You are a great inspiration. Thank you for being you!!
September 18th 2018
Woke up this morning feeling horrible but had to get moving to clinic for a 10:30 appointment. We are lucky to live less than a mile away and it is a beautiful day so I decided to walk. On my walk I found myself admiring a nice brand new grey Audi, with upgraded rims. As I am drooling over this car I finally looked at the driver, a little old lady probably around 80. Thank you for the reminder of one of the reasons why I am doing this. To someday be the little old lady who doesn’t believe or act like that is what she is.
2018 SuperBowl Sunday
I got to spend 2018 Super Bowl Sunday in the MCIU on some pretty heavy pain meds. Luckily my great friend Artie Vigil was here visiting from Phoenix. He visit spurred an impromptu intensive care super bowl viewing party. My husband Chris brought me some wonderful lobster bisque, Artie brought another friend from ASU Nancy who brought beautiful flowers (they wouldn’t let me have them in my room but nurses got to enjoy them), And Gersh brought me some ice cream. I was doing pretty well!!! I was becoming a bit restless having been in the hospital since Thursday. The food was amazing compare to what the hospital had to offer. And as I hadn’t been bale to really eat for weeks and my intestinal obstruction was finally resolving.
The drugs they had me on to help allow the intestinal stimulation were heavy I get loopy hard to understand, probably really good entertainment. So I was unable to engage with the group as I would have liked. I kept dozing off and drifting in and out of the conversation. I don’t remember a single play, a single topic of conversation, or a single commercial. But I do remember drifting to sleep hearing these people I have now known for 20 years talking and feeling my heart warm and a smile break across my face. I was wrapped in a cacoon of love with you guys (and the drugs I am sure). Thanks for the best Super Bowl yet!!! Thank you for all of your support, and visit and kind words. I could not do this with you all.
2018.01.20 Painful Sleepless Beautiful
Last night I slept probably 2 hours, tops. I was up in physical pain and leakage around my feeding tube. The tube penetrates my side and goes into my stomach and has been very useful over the last 5 years. Lately however it has been nothing but pain and trouble. Since I am not using it for feeding and I get all of my nutrition from IV nutrition it is a bit harder to tolerate.
This morning as I was up again, changing my shirt for the 4th time soaked with stomach acid and I looked up to witness this wonderful sunrise over Lake Michigan. A reminder that while right now all seems impossible and everything a struggle, there will be and end. There will be a beautiful sunrise and the beginning of a new day with a new digestive system, new triumphs and success. It was a wonderful reminder that I am one day closer to that reality.
2018.01.14 To my one and only Ma!
Confession I am behind already on this blog, on posts of various topics, thank yous etc…. I will catch up. I will use the blog portion to give you all the updates. This particular post is dedicated to my Ma. One of the strongest most caring people I know. It doesn’t matter how old I get or what the issue is, when things start getting rough,it is my Ma who I am immediately looking for. Do you do that too?? It is ok with me if that qualifies me as a mama’s girl. There in no shame in my mind in that. Largely the woman I am today has been shaped by her and my Grandmother. Both amazing ladies, if I could be half of the women they are I would be happy.
She was kind enough to come after Christmas and then head home a few days into the new year. I know she was really looking forward to spending time at home this holiday season for some much needed rest. I want to acknowledge the sacrifice she gave me this trip. What is it about a mother’s insights? They just can not be replicated.
Her trip here was irreplaceable. She helped me pack my suitcase for when I get the call that they have found some organs…she helped me pack the first box of stuff I will need when I get out of the hospital…she helped me finish decorating my Christmas sugar cutout cookies (Chris helped with those too)…she cooked, she cleaned, she listened, she yelled and stomped her foot to get my attention when we needed to talk about how certain pain medicines were making me act; how I hadn’t actually slept in days from pain and fear. She became part of the Johnson-Wacker wolf pack, led by Longou. She let me yell, scream and cry on her shoulder to process all of this craziness.
I can not thank you enough Ma!! Thank you for your sacrifice, your patience, your insights and wisdom. You can always pull me back to earth when I endup floating in the clouds. So if you see her walking the halls of Northeast, running errands at Gateway Mall please just take a second to stop and say thank you or acknowledge her role in my gut rehab.
2017.12.10 Mission Statement
I am not a graceful person, I am actually quite clumsy constantly spilling tripping over my own two feet. So this section of the site is where I can tell people thank you and illustraight where I draw my strength and inspiration from.