u/InevitableEternal

So I’m a newbie, diagnosed less than 6 weeks with this fun disease in my left hand and wrist with it possibly creeping into my left shoulder and neck (or it’s compensatory due to my wrist). After reporting this change to my shoulder to my hand surgeon’s PA, she and her awesome staff worked their magic and got me in with the group’s pain specialist for a stellate ganglion nerve block it looks like. I know I need it but I’m a little nervous about a needle in my neck and being fully aware of the procedure. But it’s what I need.

I have early CRPS in my left wrist and hand, making progress in hand therapy sessions and my elbow gives me no trouble. But in the last two weeks my left shoulder has tightened up so much. I’m now adding specific exercises to try to loosen it up but it’s painful. Could this be a progression of the CRPS, like moving from one joint to another in the same limb but not the closest one?

Mentally I started checking out 2 years ago and I wrote my DA letter a little over a year ago, laying the background. 3rd generation on one side, 4th generation on the other, youngest of 3. I married a wonderful never JW and we’re now raising my 2 kids outside of the organization. My hubby recently caught my mother in a lie (in a family group text) about shunning and excluding me so my dad and brother came out swinging. My brother has browbeat me with scriptures before so it was more of that and a flurry of jdub dot org articles about how I’m a sinner and I need to repent because I’m “removed”. I threatened legal action against my BOE if they discussed my DA letter with any other publishers or harassed me or my kids at our home. So my brother was “asking” to know the terms of my removal and my hubby told him to mind his own business. Is it me or would the average person not have the audacity to speak to a relative stranger like this? It’s like they’re (my dad and brother) bargaining over control of me like I’m property or livestock. And yet it still stings to know my family hated me this much all along.

My ex just got home a few days ago from inpatient treatment according to his wife and because of how he was admitted and our custody orders, his visitation is suspended. Now that he’s back he has to begin with a minimum of 4 weeks of supervised visits but I may be stuck supervising. The nature of his questions regarding setting visits up have been exactly as demanding and entitled as usual for him. I recognize that I’m projecting my own expectations of how I’d feel leaving 4 weeks of inpatient care for alcohol addiction onto him and assuming a drastic change in behavior so that is a me problem that I need to adjust. But his selfish behavior towards me is not sitting well and I’m not catering to it. I’m not compromising my kids safety for his convenience when I have to determine his stability to be around our kids at all. I don’t think he’s understanding the reason for the supervising; it originally was to assess mental health stability but now it’s to also gauge sobriety. I know the selfish nature of addiction and alcoholism, I am 6.5 years sober and reconcile my weaknesses daily. But what I’m already observing is a complete lack of change, it’s like he’s exactly the same person. I’m having a moment of frustration and I know with sleep and time I’ll get perspective and think clearer on it and get my head on straight.

My ex husband is coming home “early” from rehab today and I feel like it’s the calm before the storm. I know his recovery is his own, I have zero input in it and I have no control nor do I want it. I’m reflecting back on my own first 30 days sober (I did not go to inpatient care) and how much I struggled even with the support of my mental health providers and my sobriety support system, I had to make my real life gentler without my ex’s direct support (we were together back then) and it was a bear fight. My only responsibility here is regarding custody of our two teenagers, and because of the nature of his situation, he has no visitation until he ca demonstrate stability in an outpatient setting. I know I need to manage my pessimistic thoughts and feelings, I just don’t see this going well, as he’s jumping straight from inpatient to normal life. But maybe the wrong here is my expectation and not the plan and I need to sit back and wait with my kids behind me and let him figure it out. I’m prejudging the situation, based on my experiences with him and his behavior that has been untrustworthy and unreliable and I own that as a me problem. How do I look at this and not see doom and gloom and just let it play out? Is this just my traumatized brain trying to prepare myself so I’m not blindsided?

My orthopedic surgeon has put in a request for me to see the group’s orthopedic pain specialist but that was a month ago and I haven’t heard anything. If I find someone on my own, should it be ortho-specific or should it just be pain management who can do a stellate ganglion nerve block and any other reasonable treatments for my hand/wrist CRPS? I was diagnosed in mid April but showing signs since March so I’m getting antsy about missing my ideal treatment window and worrying about permanent disability.

I’m not new to chronic illness but I’m new to CRPS as I’ve only been diagnosed about a month. Am I understanding it correctly that once you develop it, you manage it for better or worse the rest of your life, right? That doesn’t upset me, I can accept chronic illness because I seem to be collecting them since adolescence with T1D. I can also accept that it will look different from one day to the next and not let it overshadow how I live my life. It’s hard not knowing the long-term or when to say I can see more normal function with my wrist and hand but progress is happening.