–I’ve had a couple of really rough days, so pardon this post’s lateness.
–I’m still in Treatment Purgatory, which is what I’m referring to this so far month-long process of waiting for my new injections to be approved and sent my way. Then I get to play another waiting game while I wait to see if the new treatment actually helps. Why does this process take so long? Injections are very expensive, and my insurance has to authorize them before we can proceed, which means my doctor has to fill out tons of paperwork documenting my case, my test results, and all the failed therapies I’ve tried to get to this point. After the authorization the insurance company contacts my doctor with the go-ahead, and then my doctor has to fill out paperwork for financial assistance (again, because giving yourself injections every two weeks is really damned expensive), and once the assistance is (hopefully) accepted, then the doctor can go ahead and send the prescription to the pharmacy to be filled. At that point the pharmacy will contact me and overnight the injections to my house and the fun (i.e. stabbing myself in the stomach four times) can really begin.
–I have been making phone calls every day to check on the status of my prescription. I sometimes feel like I’m in a sick game of Keep Away with my doctor’s office, the pharmacy, and my insurance company. Each time I call one of them, they tell me I need to contact the other to get on the status. It is so frustrating.
–I am at the end of my steroid dose, too, so I’m going to deteriorate even more rapidly if that medicine doesn’t come soon. I’ve already begged my doctor for an extension of the steroids while I wait for the injections, but I’m–you guessed it!–waiting to hear back on that Rx, too.
–My sister-in-law Alana has created a wonderful weekly event in Modesto called Art In The Park, where you can bring your supplies and gather with friends to create art in the shade of the trees at Graceda Park. It’s a wonderful event for all ages, and I’d love to go as soon as I’m up to it. For today’s event she is partnering her art event with her brother’s Bernie event and they are having Art In The Park for Bernie Sanders. There will be art, barbecue, and a Honk & Wave for Bernie. Bring your art supplies and enthusiasm and a donation for the barbecue! Let me know if you want more details!
–Earlier this week Anthony took Isobel to the Bernie Sanders rally in Stockton. She was so excited to go she woke me up at one in the morning and asked me if it was time to get ready to go yet. Since I couldn’t go I obsessed over packing and preparing anything the two of them might need, from snacks to signs to a backpack full of goodies to entertain her during the drive and the wait. I even packed her Lisa Frank autograph book, just in case. Isobel wore her signature Pikachu hoodie, as she does every day, and sat on Anthony’s shoulders, which made her really easy to pick out in the crowd. I spent the morning pouring over photos and videos of the event on social media, wishing I was there, and playing the Isobel’s Pikachu hoodie version of Where’s Waldo. The hoodie made her literally stand out in a crowd, and it was so exciting to spot her in the photos people were posting of the event. Stefanie even briefly saw her on TV! Watching it all happen on social media was the next best thing to being there. Isobel was not a fan of all the standing and waiting they had to do, but it was worth it because they were so close to the podium. Anthony said that if he didn’t have Isobel with him he could have easily gone up the to the very front. They didn’t stay for an autograph afterwards, unfortunately, because Isobel was done, but it was worth it because the next day at school when it was her turn for Sharing she got to tell her whole class she was on TV. It is our hope that attending events like this and being involved politically will turn Isobel into someone who votes, does what they can to make a difference, and become someone who thinks of themselves as a citizen of the world.
–This week I also took my cane out in public for the first time. Around the house I only use it when I’m in a lot of pain (usually toward the end of the day), but when I take it to events I use it mostly to prevent the pain from getting really bad. I was pretty nervous to use it in public. I wasn’t sure how people would react. First I took it out to the Farmer’s Market, something I wanted to do both to support the community and to celebrate Mother’s Day. I did get a lot of stares, but they were mostly the curious and/or confused type; none of them were mean-spirited. And best of all, my legs weren’t screaming in pain for the rest of the day. Later in the week it was time for Isobel’s Open House, and I knew it would be a lot of walking and standing, but I was hesitant to bring the cane. She cried when she found out I needed one. Would she be embarrassed of me? Would she not want her friends to know? I mentioned just trying to use the stroller instead of using the cane and she said, “What? No, Mom. You need to bring the cane. It’s for your own good!” It wasn’t a big deal for her at all, and none of her classmates seemed to care, either. I got more stares and questions from parents, but I didn’t mind. I was just so proud of Isobel.
–The cane does make the invisible much more visible, so I’ve been talking with a lot of people about my disease. I’m literally doing it in my sleep, as last night I was explaining Crohn’s disease to someone in a dream.
–Anthony hosted a canvassing event, and one of the volunteers sees our D20 dice ball on the table as she’s leaving and shouts WAIT YOU GUYS ARE NERDS TOO??
–My Mother’s Day was great. We saw both our Moms and Anthony took me by one of my favorite thrift stores where we found a Caboodles for Isobel. She had never heard of them before but instinctively knew she needed it the moment she saw it, as Caboodles is coded into our DNA. My Mom thinks she knows where my old Caboodles is, so hopefully we will be reunited soon. I watched Ponyo with the kids (an excellent pick for Mother’s Day with the abundance of kickass moms and mother-figures), and Anthony gave me a massage. I got treats from my favorite bakery and Isobel gave me the sweetest card.
FF Poppies in the Garden. They make me so happy, like these tweets!
Snapshot 05.05.16. The one time everyone had stomach problems but me.
YES WE CANE. I’m the crippled version of Rosie the Riveter.
FF Releasing Ladybugs. No ladybugs were harmed in the making of this post. (Elias sat on one, but it was fine)
Good heavens. LIFE FINDS A WAY!
This guy lived up to expectations. I love this
A friend suggested I take all of my posts for today’s trip to Monticello and put them in one place. Travel with me. A++ class trip will travel with Professor Snack again.
I’m astounded by the great innovation, hard work, and creativity shown by Instagram’s new logo. Instagram you are wearing garbage for clothes!
Baby meeting cat for the first time. So fantastic.
It ain’t Ozzy and Harriet. I love both of these people so hard.
Being Unproductive. My cousin Becca is Addicted to Media. She also has an invisible chronic illness, and in this video she talks a bit about how that affects her life, and although we have different problems, I relate to everything she is saying.