Decisions Right Now, Decisions For Life

Whoa! So sorry everyone. I have been seriously MIA lately. I can claim being busy, and tired, and stressed (all of which are pretty much always true), however I think I just fell out of a routine. I will try my best to get back into one though!
A few things have happened since I last updated, but not too much. I have still been attending the pain center program at Mary Free Bed Rehabilitation Hospital. Friends and family have asked me if I ‘feel better’ or I think the program is helping and I think it’s a complicated answer. First of all, it’s comical, yet hard, to answer the question about if I feel better. Well, yes and no? Yes I’m moving more and getting a bit more exercise, so that naturally is making me feel a little bit better. But no, because I’m not going to ‘get better’ per se; I’ll be able to manage my symptoms better, and a couple of my symptoms might become less severe. So it’s still a positive thing, but it’s not a black and white conclusion or answer.
The program itself is great; I do really subscribe to what they are doing and how the pain center functions. I don’t know that this is 100% true, but I get the impression made unto me that the center is not entirely supportive of interventions like medication and procedures like surgeries or implantations. While this is not necessarily a negative thing at all, it’s also something I don’t entirely agree with. I find the connection between mind and body and the use of lifestyle changes to be invaluable to a patient like me who suffers from chronic pain and chronic diseases. I would not be able to live comfortably without the mind/body changes and connections. However, I view medication and procedures in the same light. I fully subscribe to a well-rounded treatment and care plan that MUST include all of these facets to be successful. That’s not to say that I cannot make my own decisions within the program, but I do think well-rounded and inclusion should be the most successful focus of any care team.
Another update: I saw a neurologist about my right hand tremor. Went through a crazy, weird neurological examination and was pretty fascinated with the whole experience and process. He diagnosed me with functional tremor. Basically, this means there is a misfiring in my brain that is causing the tremor. One of the tests was actually able to stop my tremor by forcing my brain to concentrate and focus on a difficult task. Luckily, the treatment for functional tremor is not more medication. The treatment is Cognitive Behavoral Therapy (CBT) and Physical Therapy (PT). So we’re just adding those things to my MFB pain center program. Hopefully by the time I see the neurologist again in 4 months the tremor will be either much smaller or gone altogether.
I’m continuing to research Spinal Cord Stimulators by reading, asking my doctors questions, and talking to others that have the stimulators and gone through the implantation themselves. I’m intrigued and I feel optimistic that this could be a good option for me. Basically, the stimulator is like a pacemaker for the spine. The electrodes will target nerve receptors that signal pain and get sent to the brain before they actually reach the brain. So the stimulator will act as pain relief instead of pain medications and narcotics. To me, the aggressiveness of getting this device implanted right now is worth saving my organs and other parts of my body from the horrible damage of pain medication for the rest of my life. The next step is to get referred into the consultation appointment. And then we’ll see what’s next! I will either try to get the procedure done before the end of the year, or see how much is covered by insurance and get it done after the first of the year. Do you know anyone who has had this done? I would love to talk to them!
I recently had the pleasure of doing a podcast with the Mayo Clinic Center for Innovation surrounding chronic diseases and the notion of invisible vs visible illnesses. I’m so excited for things to come with them and for additional opportunities in the works! Listen here:
I know that was a large, long jumble of updates, but I wanted to make sure to get the majority of everything in there. I don’t want to make any excuses or justify why I’ve been MIA on blogging lately, but it has a lot to do with my stress levels, my health symptoms, and the amount of hours I’ve been working in the past month or so. I haven’t really worked less than 10 hours a day in that time span, and I’ve been working most of the nights and weekends as well. It’s a double-edged sword. I absolutely LOVE my job; I love what I get to do; I genuinely like to go to work every day. But I’m so stretched thin, and by myself. And everything I’m in charge of is everything that I’m passionate about. So it’s not really like I’m looking to offload. Hence the predicament! I just find myself mentally drained by the end of the day. And I know that part of that is my health and my daily severity of symptoms; however, I think my head and my workload is so all over the place that by the time late afternoon rolls around, my brain is applesauce.
I’ve been here before, and I know that everything is cyclical, I just want to find reprieve in other ways. I’m so thankful that amidst the chaos and overworking, I just flat out love what I do. There’s no way I could function like this without having that passion too.
Anyway, I promise I’ll be updating more often moving forward. Sorry for the nonsensical flow of this post! I’m going to the Stanford MedX conference and then the Mayo Clinic Transform conference both in about 10 days so I plan to blog daily while I’m away at those events too. I’ll especially be continuing my series with Creaky Joints on their Arthritis Power app. Traveling can be really tough on me, and I tend to get sick every. single. time. So it will be a good thing to have an app to track symptoms and report anything different to my physicians if need be. Stay tuned!
Chronically Kristin

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