I was suppose to be in Washington D.C. this week with the CCFA. But the traveling schedule I had during Thanksgiving to get Jax to and from Kansas to be with his grandparents and father, took a serious toll on me. I am suffering from a full on AS flare…
Category: Blog
When, For Worse becomes, Longterm Compassionate Care
I just read that Yolanda & David Foster are divorcing after being together for nine years, four of those spent in marriage. That’s a very long time. Longer if you are with someone with a chronic illness because some of those days tend to be long, trying and frustrating. I…
Sometimes Organic, DIY in my head
I love organic food, fabrics and products. I believe that being as natural as possible is needed. But at the end of the day, sometimes I like an In and Out burger. In and Out Burger is NOT organic. I love Etsy. Every year when Jaxon’s birthday rolls around, I…
Blog
Read more
Agent 6MP
I’m trying to make this sound so cool, but it isn’t. It actually really sucks! So, I’ve started Mercaptopurine aka 6mp. It’s a form of chemotherapy that is sometimes used by IBD patients to regulate their symptoms, as sort of a maintenance treatment. Sounds crazy right? I’m using Chemotherapy as a…
Blog
Read more
Arthritis vs. Disneyland
This past weekend, Hippo was off for 4 days. If your child is a LAUSD student, then you understand my pain. LOL! What can you do on a Friday with a high energy five year old where you can both have fun? You go to Disneyland! YUP! We sure did!…
Blog
Read more
Special Needs Family
I have a love/hate relationship with labels. Like, labels/names you place on people or situations, lifestyles, etc. Labels. Sometimes I love them because they bring awareness, they get people talking and asking questions. But sometimes they are used incorrectly, or lead to embarrassment and shame. Sometimes labels carry a stigma…