So this evening they turned me down to 3.5 liters of oxygen. Much improved from Sunday when I was near double that amount. I also walked 3 times today. I have more silver linings now amongst the clouds & that’s a relief.
I had a rough morning but I think all that residual crap from the accident had finally worked its way out of my system. (Hard to believe it was a week ago today.) This whole hospitalist team here knows my regular doctors & was committed to helping me control my pain & helping me get back on track.
They’ve done about all they can do for me here, but I’m relieved to say tomorrow (or whenever everything paperwork wise) is set, I’ll be doing some inpatient pulmonary rehab. In this case, my transplant status is working in my favor. Albeit, it will be in a nursing home/rehab facility; that doesn’t bother me. I am not proud or ageist; whatever it takes for me to get the help I need I will do.
Since I’ve shown commitment & resolve to a successful listing, it looks like I will get some benefits to try & get back where I was before the accident. I told my care team that I had come too far & worked too hard to not be given the proper resources to bounce back from this without help.
I explained how hard I’ve worked to even get to this point & get listed in November. How imperative it is that I get this additional assistance. They agree. I can’t thank them enough for everything they’ve done. Besides serving my medical needs, they actually listen & care about me as person; outside of whatever is happening medically at the moment.
While I did receive decent care over at the trauma center, they clearly did not know how to respond to an already seriously ill patient.
My pain control was much worse, I was sleep deprived. I was told to go home even though I pleaded I couldn’t because I did not have enough resources.
The trauma team overruled the pulmonary doctor trying to fight for me. I was not even given the alternative of transfer here to this hospital, to a rehab, or another floor or anything. I was simply kicked out & quite forcibly. Which was dangerous considering I had inadequate oxygen to support myself. Unfortunately, my story is not uncommon & happened even with me trying to advocate for myself.
As my pain was finally controlled, I found it easier to deal with the excess anxiety & mental health portion of the accident. The doctors here were super responsive to that as well. Of course after a visit & some check-ins with my therapist (& thanks to my friends) I have come through this pretty well so far. It will take time, I realize that.
Yet, I am probably in a better mental state now than even after some prior hospitalizations for procedures & surgeries (or at least feel equal support in that regard), which is a relief . It was a concern because I had been seeing someone regularly for anxiety treatment & medicine monitoring but after I became disabled & unable to work in July, I couldn’t see them anymore because I wasn’t allowed to drive that distance.
That old office gave me a hard time about it, but I also had to wait for an opening to another place my therapist recommended to me so I was in a bit of a bind.
Before the accident I was working through it & did my best to deal & pull in others for support. But there is a serious lack of general mental health services for people period without them having to wait 3 months or more for a script. Even if they have been getting treatment or just wanted to change offices/practices. It’s ridiculous.
That has always been & will continue to be one of my pet peeves about that system.
My friends always know when I struggle & am not myself, too. They were helping me but it was harder after the accident. The excess anxiety from the accident, compounded by a severe lack of sleep, & lack of proper oxygen were finally ALL addressed here when they should have been much earlier. But the point is they are addressed.
I have had some wonderful nurses the past few nights (like prior hospitalizations years ago) some of them were curious about my diseases, my transplant, & other things so I did talk a bit to them. I had some very profound & meaningful conversations that I can tell impacted them as much as they impacted me.
In addition, some very special & caring friends have been there since day one & after. Many who haven’t been able to be there like they wanted (for various reasons) have provided comfort & cheer in other ways.
Something important to know (even if you are not religious but are one iota spiritual); Energy (whatever form it takes) is a powerful thing. (Whether it be channeled through prayer or other methods). That energy is meaningful & awesomely strong. At my weakest points I’ve felt it when I had been completely tapped out myself. I always have that at my lowest points. I am lucky to have that. Not everyone does.
People’s empathy, caring & good thoughts really do make a marked difference whether they can express that or not. The tiny prayer, the good energy, a special unique treat, even something heartfelt done or said go such a long way to boosting someone when they are at the bottom fighting their way back up.
I know that it will take some time, but I will get what I need to get back to where I was or close before this accident & for that I am relieved.