It has been a long month for me… and honestly, as much stress as I’ve had it has still been a positive thing.
– For two whole years I felt I was chasing my own tail with my primary care doctor. He started his medical career helping extreme TBI cases before he became a full fledged dr. But, that was many, many years ago. He had always had great intentions for helping me as much he could, but things didn’t turn out the way I’m sure he intended for them to.
– The truth is, sometimes when doctors are good at what they do, they don’t like admitting when something finally goes over their heads. I can understand and empathize with that. If I were told that I wasn’t painting a piece of art as well as the intended commission was expecting, I’d be at a loss for how to improve it. I wouldn’t feel right to advise the person commissioning me to go and use another artist. I bet it feels the same way for doctors, but on a much larger scale of responsibility and they have to think about the best long term outcome for their patients – so, I guess it really isn’t that similar… The only thing I would lose is a commission/sale of my artwork. A Dr could lose so much more if he/she were to be found lacking.
– Well, I went behind my Dr’s back (because he kept on giving me the same line of crap about how all I needed was a therapist instead of actual neurological-rehabilitation) and talked to an LPN in the same network, but at a closer office to where I live. That office is where I get blood draws, yearly women’s wellness exams, and where I go for minor injuries and illnesses. I admitted to the LPN (Sherri) that my primary Dr wasn’t really doing anything – and that I knew for sure there was much more that should and could be being done for my healing and to improve my health. She listened.
– Nurse Sherri listened to my issues about body and bone pain and referred me (out of their network) to a rheumatologist, Dr R. Dr R and I talked about my accident, and how my body hasn’t been the same since… and how the amount of pain I’ve been in (constantly) hasn’t improved no matter what I do here at home. She ordered x-rays, blood draws, and did a full work-up on me that took almost two hours time. She was thorough and careful.
– After the x-rays came back, she found my neck was injured, my right knee and left hand have psoriatic arthritis, and that I have disc degeneration disease in my lower spine. There was also signs of damage in my right shoulder and hip – which was likely from the actually accident that caused my brain injury (being struck by a car in Sept. 2013, while walking.) I’ll see her in late February to discuss what if anything can or should be done, both medically and physically to ensure that my body doesn’t deteriorate too quickly. Dr R referred me to a new neurologist, Dr S, after determining that I also have fibromyalgia on top of ataxia, and chose Dr S because she is very astute and current to the updates and new research findings about TBI.
– Dr S ordered an EEG and an MRI with contrast dye, to scan my brain so she can see what state my brain is in right now – two years out after the accident. She started me on a medication for my chronic migraines, and had me see a psychiatric nurse, Nicole, about the medication she put me on, and to see if there was anything else I needed to be on in order to sort out my PTSD symptoms and severe insomnia issues. As it turns out, there is a medication used to lower blood pressure that is very effective in combat veterans with PTSD in lessening the occurrence of flash-backs and night-terrors which I also have been struggling with. (I’m not a war veteran, but I’ve been through enough horrors, traumas, and grueling events in my life to have a lot in common with combat vets.)
– I started both new medications (the one for migraines and the one for PTSD) and they’re still absorbing into my body. These things take time and patience. Both of which I have in abundance. So, I’m patiently awaiting to see if my body will respond in kind to the medications, and to see if I can start sleeping well. While I was visiting with Nurse Nicole, I had a gene-test done to see which medications would or wouldn’t metabolize effectively in my body, for future medication reference. It could explain my body rejecting SSRI’s all my life, and rejecting the Buspar I was put on by one of the first places I sought out for help after my TBI. (Which is a whole other story, and a nightmarish one, at that.)
So, here’s the run-down of the visits I’ve already had, and will be having with the medical community this coming month:
Dec 8th – First visit with Dr R (Rheumatology)
Dec 28th – First visit with Dr W (Dentist) – this is for the remaining 15 non-salvageable teeth that will be extracted within the following months
Jan 7th – First visit with Dr S (Neurology)
Jan 8th – Blood draws to check if my Vit-D deficiency has improved at all (which it has, somewhat)
Jan 26th – First visit with nurse Nicole (Psychiatry)
Feb 1st – First (of many) Dental extraction(s) with Dr W
Feb 11th – EEG/MRI with contrast dye (brain scan)
Feb 11th – Second visit with nurse Nicole (Psychiatry) – talk about my medications
Feb 22nd – Second visit with Dr S (Neurology) to see what the EEG/MRI showed, and what should happen next in my treatment plan
Feb 26th – Second visit with Dr R (Rheumatology) – to see what or if there’s things I can do to protect my bones, and prevent more bone damage / see if there’s anything I can do about physical rehab for my current injuries in order to avoid more damage
“Sometimes the hardest part is getting started, and then to keep on going.”
– After all of this, I’ll have more dental extractions, keeping up on updating nurse Nicole about medication effects, and continue on my neurological journey back to healing and hopefully being very productive in my life. Most of my symptoms are debilitating, and I’d like to do all that I possibly can for myself so that I can get to the point of being able to steadily work, drive a car, and keep up on my day to day things (like dishes, laundry, and memory formation skills.) My life is going to get better because I didn’t give up, and I’m still fighting for a better tomorrow for myself.
– If this seems like a lot to any of you – just think how it feels to me. It IS a lot, but it’s all good stuff. It’s all part of my journey back to becoming healthier and more productive as an individual (so I can lessen my need for outside help from my parents.) They love me, and would continue helping me for the rest of their lives, but, I want to be able to help myself again – like I was before this brain injury and physical damages. I don’t expect a single thing to simply happen overnight, but, I am so sick of feeling stuck and not knowing what to do next. I’m a doer, not a “sit and wait-er” when it comes to my personal abilities.
– Most of my frustrations have come from not being able to move forward in any real and noticeable way. All these Dr’s visits, medications, and future rehabilitation will be (to me) huge steps in moving forward. This is what I’ve been needing for two years, and I’m SO glad and thankful that things are finally moving along in the right direction. I’m getting much-needed answers, diagnosis’, and treatment-plans that will ensure I’m going to continue this trend of move-forward-ness. I feel like I’ve been trapped for these last two years, so all of this (no matter how stressful it has been) is really great for my mind. Now I’m sure that things are going to get better.
– Some of the answers I’ve gotten seemed devastating, but, that’s just because I didn’t know much about them…. what they pertained to/how it really effects my life. Now I’m learning to adjust and adapt to the limitations I have so they can become new-found abilities instead of life-shattering disappointments. While going through the newness of the news, I figured I was essentially “screwed” and that there was no getting around the limitations. Now I’m learning there are ALWAYS ways to move beyond anything that limits abilities, because there will always be options for adaptions that I can make/create in my life.
– If I stumble upon a boulder in my path, am I going to stop and go back, or am I going to figure out if I can climb it, or go around it toward another path, or what? The answer is, I’m going to figure out how to deal with the boulder in a way that won’t harm me, and won’t make me turn around and go backwards. Same is true for how I’ve dealt with the Dr who gave up and didn’t admit defeat. I went around him, sought out a nurse in his network, and told her that I’m not willing to admit defeat like my Dr has done. Through that simple (but stressful) task, I’ve gotten the help I have been needing.
– I encourage ANYONE to do the same, with any aspect of your life, your health, your careers, and your families. If you’ve hit a stumbling block, work smarter instead of harder, and advocate for yourself into a place of betterment. We all have options, even if they’re tough, hard to find, or seem too large to handle. I know for sure it’s worth the effort if it propels you forward on your journey to a better life. If I can do it with all that’s wrong/all that’s happened/all that’s damaged in me and my life, anyone else can too. It’s a choice to stay stuck or to dislodge oneself and find a way to move forward.
Thanks for reading! 🙂