Slow and steady

Slowly, I am getting ahead. Each day I have great hopes, lately getting my first book published, and every day other things keep popping up. With the Vyvanse, I at least keep busy, on whatever task popped up.

It’s early now, only 7:27, I thought I would write before dinner tonight. The morning went as usual, awake at seven, downstairs shortly after. Morning smoke while watching the Today show and scrolling Facebook.  After the discussion with another Mayoral candidate yesterday on Facebook, I added it to my website once I thought it was complete. However, this morning Dennis, another presumable citizen of our City, added a few more questions. I went upstairs to shower, take my pills, and otherwise get ready for the day while I considered my response.

As I editing my response in a separate word processor, my reply grew to over three pages- I even had to shorten it once I copy and pasted it back over to my Facebook windows in reply to Dennis’s comment. I spent so much time on it this morning that I’ve included it also on the site, hopefully if anyone else ever has similar questions I’ll be able to refer to it by link.

Also, as I mentioned last night, in regard to the longer comments on the conversation a few days before, that I had gone back and written, well essentially an apology for Catholicism. That ended up being pretty lengthly as well, and also something I might refer to again (I do like this write once & reuse style I’ve found,) so I added that here as well. I really do like having a place to collect all the things I’ve written.

Importantly this morning, just as I was about to get into the shower, I received a phone call from the Regional Director of Orthopedics for Henry Ford. I thought it seemed like he wanted to get off the phone quickly, I can only imagine he is a very busy person and possibly, he does not find himself calling patients often. He was quick to explain that Dr. Faulkner was previously under the impression that I had wanted my femoral rod removed, which is why he had declined the initial referral when sent. As soon as I cleared up that miscommunication, I gave a brief background on my case and clarified my request to have my hip bolts removed. Equipped with the new information, we ended he ended the call and said that he or my doctors office would be in touch.

The day went on, I jumped (no I didn’t,) into the shower (shower yes, jump no,) took my pills and came downstairs, it was almost ten by then, which is went I went to work on today’s reply to the new question that had popped up. A few hours spent on that and somewhere past two I realized how hungry I was getting and also that I needed to run over to Stone Depot to resupply my cbd supplements (is that a clever and still accurate way to rephrase that?) I even stopped at McDonalds for lunch on my way.

Once I got home, I started looking at my lists, yes plural now, just two, yet it still seems to be more than I’m managing, well maybe three. Each night I leave myself something to do in my posts, as now- tomorrow I’m going to work on the first book. So that plus the whiteboard, plus the list on my standup desk. The first item on my whiteboard? College. I’m going to signup and start some classes next month, I’m not sure which classes, online or in person, or how many. Yet I am going to start some classes next month. As of now, I’m waiting for a call back from a student navigator.

Then I was thinking of all the other things I needed to do, and then started to think about the other pieces I’d written and decided to add those to the site as linked above. I suppose if I was going to write a few extra thousand words, I wanted to be able to show my work. Also, at least for the apology, so that I could reuse it (quoting my own links,) and that I felt it needed public display so that it may receive pubic review from both members and non-members of the Catholic Church.

That is important enough- well not just it, but even a few other pieces I’ve written about Angels, Imaginary Numbers, How does a bird become a sheep,  Fact, Faith, Feeling & Fiction, or even the story about my little sister at the lake- that if I am going to write publicly about my Catholic faith, I should reach out and ensure that I may be checked for errors as I would hope. Hm… I can think of one or two people I could reach out to tomorrow, that might be willing to read a few pages to ensure I’m not creating any controversy or contradictions with the CCC. Gladly, my errors will be clearly logged here, so that if any errors are pointed out I can go back and correct them.

Ten on seven now, actually ahead of schedule for the night. Several hours past the end of the business day, close to seven, I received another call from the Regional Director of Orthopedics for Henry Ford. Oh, another note- this is not the same one that contacted me last December. When he had first called in the morning and gave me his title, I questioned him as I had expected the same person. He told me the two of them were both mutually Regional Directors, her of the administration side, him as a Medical Doctor and a surgeon himself.

That was an important differential I told him then, and it was as I immediately knew he would directly comprehend the level of medical terminology that I’m been able to come up with so far so I could attempt to my best to present my case to him, and his personal experience (and authority,) did help immensely in our conversation, as well as enlighten me on a number of fronts. He still seemed a bit rushed (however as I imagine him with many important tasks, I was glad to get a call back the same day.)

He said he had spoken with my Michigan pelvis surgeon, Dr. Faulkner, which is the best pelvis surgeon in the state of Michigan per my friend Amelia (another satisfied client of his,) and she loves him and objectively, that has greater weight to me than my own feelings as they’ve varied (sorry, TBI,) about him over my time with Henry Ford, my thoughts have never changed, he is my preferred pelvis guy. Same as with my primary physician, Dr. Bell- he was my doctor before my brain injury, I trust him, won’t replace him, and will even waive him if and as necessary as I know I chose him, back when I fully trusted I. With both, I know they are better doctors than I am a patient, I’m pleased they haven’t shown me the door. I’ve presented as non-standard case that seems to just keep going.

Discussing my hip bolts now (as I lovingly refer to them, they are actually two screws, each 6mm by six inches long, give or take, through each SI joint and crossing into my sacrum at the base of my spine,) Dr. Faulkners feelings stayed the same as the topic changed. I trust a full discussion was had between my physician and whatever chain he takes to bring my case to the Region Director. The director- and I forget his name now as I found no mnemonic at the time (unlike the other director, that last name is similar to an insurance company I know,) he was rushed so I didn’t have time for some of my usual slowing movements through the conversation – and upstairs with no pen and paper, I had to both head copy new information while making sure I was feeding him linear information that he cared to hear.

With that the case the director suggested I follow up U of M and see what their surgeons would tell me. I asked him why I would do that when I haven’t even met with Dr. Faulkner yet for him to tell me why I didn’t need my hip bolts removed. The director, I am hopeful out of a preservation of the surgeons valuable time, implied that both he and the surgeon, didn’t need an additional meeting, which truly it didn’t, I had an MD on the phone, and he said he could debrief me.

I asked him why I didn’t need the bolts removed and he said drill bits break commonly (said he’d even had one break himself a very long time ago,) and that my pelvis was already well reduced in Florida and that addition surgeries wouldn’t change my pelvis outcome and the bit nor bolts should come out. I’m not sure if I asked, or if I merely implied with a “I know by know you’ve all read my letter…” and you know of the multiple issues that are affecting my left leg, and the multiple reasons I feel this is my next best step. If my preferred surgeon disagrees after reading all that I wrote- I’m not concerned with the drill bit, it is safe to keep where it’s at, only that my left bolt is in secondary position as the bit occupies the prime location on that side, which coincides with my lack of hip range of motion, combining with my additional issues… I went on.

And yes, I could tell he was more rushed, more by the second and I pushed to get my story out. As soon as I had to catch my breath he was quick to jump in, a trained professional he is. He “perfectly understood my resistance in the situation”, he said and said it was perfectly okay to want a second opinion and gave another warm referral for U of M, naming several good doctors (I presume) in their various fields. He was speaking slowly and pacing his words- he had his whole sentenced planned out in front of him. He was inserting time. I do like speaking with professionals.

Taking his tone, as I thought he hoped, I kindly replied in my own slow and even voice, it is senseless to go seek a second opinion when I haven’t even received the first. If my surgeon says I don’t need this surgery then I want to know why, right now I am under the impression it is my next best step. If it’s not then I want to know what is, I do not need another surgeon to make me believe my own surgeon is correct and I certainly don’t want another surgeon to take out my bolts if my preferred surgeon says I don’t need that done.

His tone changed here again, I can’t remember quite what he said, slow and stumblely, hesitation. I was quick to jump in myself, I have argued with professionals before. Hemiparesis, rTPJ TBI, syrinx, S1 nerve impingement, ankle paralysis, spasticity. I had to get through the conversation without saying pain once. The current inability to walk properly after 18 months. And I paused.

< Let’s just note here, that I am aware that as the author, I likely have a partially unknown bias to romanticize my parts and create ‘villains’ from the other characters. At all costs I must avoid this, sure I’ll remember stories and likely tell stories that sound ‘nicer’ from my point of view as I’ve by time I typed my notes already ‘inserted time’ and had a more calm output of my recollection. Most importantly, I have to keep reminding myself, that I have invoked this human network and it is working, there are no villains here, just human people like me and you; and this one was still in his office at seven pm speaking with a mental patient.>

His tone changed again, and then went on to recite the previous diagnosis, yet he changed his recommended next steps. He suggested a number of sports medicine doctors available at Henry Ford, I feel in Jackson, yet I don’t remember him saying that. I accepted his suggestion and then persisted a bit on my previous point and as I added that I’d be happy with whatever course of action he thought was best (as I recited my entire case,) for another six months and then we could revisit my current suggestion.

I didn’t have much more to say and left it at that and he seemed to recite the keywords of each of my major points, paraparesis, and the S1,  removing the screws (as he calls them,) won’t improve any of that. Of course not I replied, yet I believe that would increase the range of motion of my left pelvis in relation to my right, specifically as my left leg rotates inward when standing and will not rotate fully outward with my knee raised. I then added, that and I would really like to know what specialty will really be able to check me out, watch me try to walk, touch my toes, and explained briefly the FL to MI path of my health care, and how it dropped in the lap of my extraordinary primary doctor with my mostly undiagnosed case at five weeks old.

His tone changed again, rushed, very rushed. He recited an abbreviated version of the diagnosis, with the same conclusion- no screw removal, recommended sports medicine follow up, yet this time did not tell me names of doctors to call (Oh yeah, I also told him the story of Dr…. hmm, I won’t say his name. Dr. PMR, and barely got to any of the good parts of that story,) rather, he said quite clearly, he needed to let me know and that someone from his office would be calling me back soon. I reminded him I knew my case was non-urgent and thanked him for his time. We exchanged pleasant goodbyes and I thanked him again.

Ten minutes, I just checked my phone. Wow, he is a professional, he was firm in his message, unchangingly even in support of his staff. Yet, at the same time, he accepted new information from me, iteratively and changed his recommendations accordingly. An absolutely top notch professional ‘top-level’ MD, even ‘inserting time’ and using techniques to move the conversation, I was impressed with this Regional Director too, glad to have him with Henry Ford.

Objectively, it’s obvious that he’s trying too hard to catch up or keep up with the other Regional Director, Becky; she was all this, and a bag of chips. She stayed much calmer- she didn’t have to change tone to slow down, it just stayed there and kept me there too, when I was arguably likely in a much worse mental state at that time. She also wasn’t ever rushed, if she was she hid that well and let me feel as if I had all of her time in the world. Two different skill sets, also objectively, today I’m glad I had an MD. Back then, we all knew I needed the internal fixation bar and screws removed, today I don’t know- I am just the patient presenting my best case and my own thinking.

Hm… 12:16 now, just over twenty five hundred words, wow.. I didn’t think I had that much of a story, around five hundred words I thought I would wrap it up quickly. I stand corrected. Hmm, how has the rest of the night gone? Very well.

Made spaghetti for dinner, one of my (and my sons’) favorites. Sadly, and gladly I have much left over in a gallon size zip lock bag in the fridge, that may last a day or two. I started cooking shortly after I started typing, I was hungry. Cooked and kinda typed, while multitasking watch Simon and Terry watch Simon’s favorite AGT tryouts. The things I’ll tolerate in order to not need to find a remote. Being the top however many acts, it really was pretty impressive. Talented people all over the place.

Also reached out to another friend, a missionary (of sorts, I haven’t talked to him lately, it seems like he’s grown roots.) Hoping for a few minutes of his time I sent him a link to my recent Catholic apology published, hoping corrections come quickly in need be. However, I am unaware of how often he might check FB, so we’ll see if he catches it soon. In the meantime, please, published here means I’m looking for errors, please comment if you see ways I could improve here. That might be a first… I just put that item on my list for tomorrow at one point in my post, and by the end of the same post I’ll already effectuated it.

Time to rest.







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