(a lil’ bit)
Hello, everyone out there! It has been crazy here, as always, and here we are already looking at the end of July! Where does the time go? There are 92 days till Halloween (as of today, 7.26.22) and 152 days till Christmas! Before you know it, 2023 will be here! Sometimes, I’m bewildered at how quickly time flies by. I remember when I was a wee girl how the days would just drag on and on. Now, I feel like I need a lasso to reign it in. My kids are all grown now and living their lives, even though two remain at home and I have a grandbaby! It’s nuts. I try to purposefully slow things down in my mind and savor every memory.
Let’s see, where to begin… Alright. In spoonie land, things have been meh. My recent rheumy appointment has at least supported my belief that pain management could be doing more, but the question remains, will they do more? This is not to imply in any way that my doctor is bad or doesn’t listen to me. He’s quite wonderful, and I’ve referred the family to him. However, amid this ongoing opioid war, my doctor, along with many other doctors, has taken a more conservative approach when it comes to managing pain. We regularly do injections, nerve blocks, and radiofrequency ablation for both my S.I. joint and my neck. I can, and will, bring him the recommendations of my rheumy, but it is difficult to say what he might do. I’ve been very open to procedures of minimal invasiveness. I have two spinal stimulators and I take fairly low doses of opioids. If my rheumy feels like there’s more room to go up on meds, I would hope he is open to listening.
My pain is from both the R.A., Ankylosing Spondylitis, disc degeneration, and failed S.I. joint fusion and failed spinal fusion, but also from fibromyalgia, which is more soft tissue related. There are multiple areas plagued by pain, and I know one pill can’t cover everything, so I’m hoping there is something out there (or a combination of some things) that could help reduce pain. I even brought up at my last appointment the possibility of an intrathecal pump, which would allow the medication to bypass my liver. Pain meds and medications, in general, can be taxing on the liver to filter out, so if there is something that could help alleviate the strain, it would be something to look at seriously. We’ll see what the future has in store for us.
In other news, I’ve also been watching my grandbaby. Mama went back to work and I’m happily watching him so she doesn’t have to put him in daycare. Unfortunately, both of them contracted COVID, and although they are doing well, she hasn’t been able to work and I haven’t seen the little guy. I miss him terribly, and I’m looking forward to being able to spend some time with him again. It’s amazing how quickly you become attached to their little souls. I’ve always loved children and growing up as an only child, I knew I wanted a big family. I wanted to see the relationships between siblings, and I wanted to teach them that, no matter what, they would always have each other’s backs. And they have. Now, I have this little grandbaby-a boy-and I get to share his life in this different role as Mimzy. I’m looking forward to being there for him, giving him a safe space where he can learn and grow. I know all his aunties will be there for him, keeping an eye on him and gently steering him back onto a path of goodness should he veer off the path. I know that they will defend him but also respect his space to grow and experience life and make his own decisions. I’m sure it will be quite an adventure for everyone.
My other “crazy” has been because of mental illness. My anxiety and OCD have been quite active and difficult to manage. This has been affecting my dermatillomania and other body-focused repetitive behaviors (BFRB) that I struggle with. I hate doing it, but sometimes I don’t even know that I am doing it, which makes it difficult to break the cycle. One of my BRFB is morsicatio linguarum—where I bite the sides and tip of my tongue until it bleeds. I can remember doing this as far back as I can remember. It was a way of diverting the pain of childhood bullying and dealing with anxieties. I never knew what body-focused repetitive behaviors were until maybe five years ago, and only a year ago did I dare bring it up to my psychiatrist so I could deal with it. It was shameful and embarrassing. I didn’t know anyone else who did it, and then I began reading about others who struggled with the same thing, and it made me feel “normal.” I use quotes because the picking or biting may not be normal, but I am. I am just a human being who has problems like so many others, and this is comforting. I’m trying to work through breaking the cycle of biting, but it’s difficult. Oral BFRBs are one of the most difficult to break habits from because your lips, cheeks, and tongue are all accessible to your teeth. But I am gentle with myself and forgive myself when I do it, because most of the time, I don’t even realize it. If you think about it, I’ve had this problem for 40 years. It’s not going to stop overnight.
It may seem that I have abandoned blogging, but that couldn’t be further from the truth. I think my previous and more consistent posts way simply be more random. I plan on working on things around watching the baby and everything else I need to do, so be patient with me, please! There are more posts coming!