Wow. It has been a while.
Like many people who deal with CRPS, I am on many medications. Sometimes the medications, or combinations of them make me feel quite dulled mentally. For all my openness, I still can’t put something on here knowing that the writing isn’t totally me. The good news is that those combination of meds have been changed. The damp rag over my brain has dried up! ! !
Keep reading for more news on all things Zara. Yippee-cay-yay-MFer.
As I approach the 2-year mark, I am still feeling hopeful. However, I am finding that these markers of time bring doubts about in a major way. I had another spreading scare recently. I was still sore where my recent IVs were placed…in that type of suspicious way that nobody with CRPS ever wants to believe they’re feeling. Even last night, I had a new sharp, searing, stabbing pain in my lumbar area. I’m still having it, and it’s in the same spot as the failed nerve block was administered about a year ago.
There’s a bunch of news that I may have skipped over in the last few months! We have a lovely new rescue dog, who has been here since November. Mr. Magoo is a wonderful little terrier mutt who loves to grumble, and prance. Mr. Magoo is 11 years old, and we are so happy to have him. Even my picky little Cocker Spaniel, Molly, loves him and has bonded deeply with him.
My parents are in the process of purchasing land, and a modular home in Joshua Tree, California. Ideally, I will be able to live there in the winter with my mom and dogs. Even if the trip down is absolutely brutal, I believe getting away from Calgary winters will really, really benefit me. Joshua Tree is a very special place for everyone in the family. I took my first steps there, there have been some important rites of passage there, and my parents have been camping in the area since it was a National Monument. Actually, my mom still calls it “The Monument” sometimes when she is talking about the National Park…haha!
I’ve had two different day procedure infusions now. The last one seemed to help a bit with my sensitivity, and a very small amount with my overall pain. I think it’s long gone now. I am not going to do any more infusions at this pain clinic. The pain clinic is also restricted in their dosages due to it being a day procedure. I have some further med changes coming up, so ideally that will help me get a bit of an edge to push harder in my physical therapy. I’ve made some gains physically on that side of things. The gains include: being able to perform a glute/hip bridge on my back *without collapsing out of it in intense pain and nausea*, getting my left foot to point properly again with no toes lagging behind, being able to stretch my back on a foam roller without an extreme flare, and MORE. I strive to remember that function is the best way to measure progress. My pain hasn’t changed very much, but that is not the only marker.
My Bachelor of Science degree, majoring in Cellular Molecular Biology is gone now. Absolutely, totally gone. I do feel grateful for how it helped me unknowingly prepare for this new life with CRPS, but at the same time I am sad and angry. I really enjoyed it, and it was hard work that I put a lot of effort into. I fell in love with science, and I had some amazing experiences while studying it. Fuck, it’s hard to let go of. The wise people around me say, “shit happens”. Yeah, I guess that covers it. (NOTE: I am still very lucky, as I carry no debt from this non-degree. My parents are providing for me, and caring for me right now. I have no idea where I would be without their 24/7, amazing support.)
Sometimes I get terrible floods of emotions when I look at photos from the past. It seems to be pretty random whether I will get a mudslide of shit emotions, or happiness in the memories. I ride loads of roller coasters, they’re just mostly emotional…apparently. Flip a coin, as one of my friends found out recently. Send me photos and I either love it or I get so upset I have to ask you to stop. Classic emotional roller coaster.
Other smaller, yet nagging details include some weight gain. It’s really just a general piss off right now. I have accepted it because I only have enough energy to mentally battle a finite number of topics. Thankfully spring is here, and summer is coming up so some good fresh seasonal produce is coming.
Oh, and my dreams still. Sometimes they are absolutely torturous. As in, me attending a music festival and being tormented at every turn with my lack of mobility, and my lost ability to dance.
This is the life of someone living with CRPS. This is my life right now. I want everyone to know what it can be like, because CRPS is the most fucked up disease I have ever heard of. Biased or not, I believe it.
Mr. Magoo at his most fluffy, mongrel-y moment with us so far. Love this look. ❤