Self Care

The most difficult chore I have is self care. Being “formally” diagnosed 12 years ago, you would think I would have a better handle on self care, but I don’t, I am trying…. I have a habit of putting everyone before myself, whether that is to cook, clean or take care of. As I write

Strange day 1/24/2021

Woke up really early and decided to go back to sleep (always a bad thing to do).  Woke up a few more times and finally got out of the bed. Hmmm… feels like my legs are rubber,  maybe just hungry. Buttered 1/2 of a sesame bagel,  that Taylor bought for me yesterday, and made hot

Remicade

I started Remicade infusions in October 2020. They wanted me to start April 2020, but Covid 19 was in the world and I did not feel safe. So, the 1st time i had the Remicade, They gave me Benadryl through the iv and my right chest started burning (I was told that the Benadryl was

8/7/2019

one thing I have learned from life, is to live life, have fun and don’t take anything seriously! Heading to the city today to see my Mohs surgeon. I’m still not healed…. But meeting Kristina for some shopping and girl time. It was nice to see Kristina and help her with her future job. Sadly,

7/27/2019

Today has been a high pain day, I don’t say anything because I don’t want the sympathy, I’ve never been that person. Spent most of the day on the couch and took a short nap. Pushed myself go to movies, too see “Mama Mia”, then dinner at Flo’s lunchonette. Had a hot dog with bacon

City Today 5/23/19

It’s actually been a difficult week. Pain level is very high, i could feel pain all night last night. Unrelated, I’m going to see a cardiac sarcoidosis Doctor, Dr Reyentovick, at NYU, in nyc. I have surgery coming up on 6/11, that was finally figured out. No surgery center on long island is latex free,

Hello and Welcome

My name is Cathleen and I have Sarcoidosis. It is a rare disease and that has been around since 1869. It is considered a “snowflake” disease, because no two people are alike and that is what makes this so difficult to not only diagnose, but to also come up with a cure. My blog will

Our Journey into 2020

2020 started out the same as other years, we went to our friend’s house for the New Year and we were excited for 2020.  We had 2 vacations planned, one in May to Mexico with my dad, sisters and family, so all together there would have been 11 of us going.  Then, in July we