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sKePTiKal:
LOL... there's a whole cast of characters around here these days Hops. Matthew is the former house guest; the one we took to the hospital and helped stake to restart his life. He is on "intimate terms" because he's spent so much time here... we've been his "group support" and he's been vulnerable and open about his stuff he's dealing with and working on... and because Hol is tackling a new thing or level - it's good for her to have someone with his experience in addition to mine, with actual therapy. We also laugh a LOT when he's around. He doesn't have any family nearby; so we're kind of his PHamily.

Yah, it's been an eventful year - but stuff is MOSTLY to the upside for everyone; the sunshine side. Some hard things to process take a long time; come back over & over; and you get one more bit of treasure to put into the "keeper" trunk. Matthew and I were talking about that a lot this last visit.

The idea that you grow up - and then life is permanently good. Or you go thru therapy and you're instantly permanently "fixed" and nothing bad will ever happen again. IME, that's NOT the way it works. LOL. We keep learning, seeing something new, maybe even revising what we initially thought was "the end of all that".

sKePTiKal:
I think I'm starting to go into my winter time Rip Van Winkle mode. That's where I step way back from "doing" and try to see what I'm always looking at, more objectively, in a bigger timeframe or overall landscape composition, get outside of my self and imagine & dream.

Yeah, there are holidays on the horizon. Starting with Halloween. LOL. But because I go so quiet, it's usually more welcome than not. I no longer do things for the holidays that make for exhaustion or being stressed out. For anyone. It's either casual and fun, or I'm not doing it! LOL.

Buck had disappointing news from his meeting with home infusion (who fills the pain pump with meds) last Friday. Guy said things are more likely than not infected and therefore he can't take a chance of contaminating meds (by piercing the skin to reach pump port). That would give Buck another round of meningitis. (which he is, god forbid, USED TO by now) But the catch, in the catch-22, is now the Infectious Disease docs - who give him 2 ibuprofen for the fever he runs from the infection and send him home. No antibiotics; no tests or samples to see if he's infected or if it's the same (or different) infection. If he goes back to his doc - who is the surgeon - the only thing he'll suggest is taking ALL the medical devices out; and that would be forever. Buck refuses to do that.

[Today's news: Infectious Disease absolutely refuses to take a sample; Pain Management is trying to qualify him for a 2nd opinion. It's been 3 months since the surgeon put the devices back in. And 3 months that he hasn't been getting his full dose and it DOES impair him functionally to not have the level of painkiller this device system is designed to provide.]

Because the infection is AB resistant, he is very concerned about how contagious it might be. The Infect Disease people haven't even given him guidelines about that. So he's not eager to get together and possibly give me the infection, even though the research I've done (using reliable med sources) indicates that as long I'm not immune suppressed there is nothing to worry about. Just the normal precautions; don't share toothbrushes or towels, etc. So beach trip isn't going to happen until something changes with this situation. (I am currently in "not reacting emotionally" mode with all of this... just sticking with functional/rational thinking for awhile.) HOWEVER, I have also learned that this infection, given it's totally internal can also become life threatening if left untreated - in several ways.

Therein lies my main concern. He knows this; he was on the edge of sepsis before when they gave him the same runaround. He is frustrated (I wonder why?) and getting very angry about this. As he puts it, it's as they're TRYING to kill him. But without VA approval to go elsewhere, he's stuck with the same people who infected him in the first place.

Maybe this needs to go on Lighter's accountability thread.

Someone who was injured on combat duty should NOT have to have a lawyer to access treatment or avoid facing a neglectful death from our health"care" system. With treatment of the infection - on a maintenance schedule - it CAN be managed; my ICU nurse DIL has already told me that it's common practice. With pain management, Buck's quality of life will be fully functional again. Even through the pain, he's functional. These people seem to want him to become an invalid and wither away in a nursing home. Fully functional, he's in better physical shape than many people much younger than he is.

Should our soldiers have to go to war with the system, to get treatment for injuries they incurred while serving the country? (whether you agree with the civilian political branch or not, about whether we had any business sending military "there" in the first place.) It's not just Buck either. I've heard the same kinds of things from other former soldiers. There are a LOT of degrees of "helpfulness" in different parts of the country from the VA. In the end, it's just another "all powerful" bureaucracy that doesn't care about the people they're intended to help.

/rant for the day

Now, I really need that "get quiet" time to try to find some creative solutions. In spite of the "system".

lighter:
I am actually vibrating as I read your post, Amber.

And wondering if Buck can seek VA services elsewhere.... somewhere they're not trying to kill him.

Their refusal to do any testing is mind boggling in a situation that could lead to serious or lethal consequences. 

WHO ARE THESE PEOPLE MAKING DECISIONS WITHOUT ANY CARE ABOUT CONSEQUENCES?  And.....
they're screwing with soldiers... 
people of action.....
people who know how to kill people too.  Soldiers with PTSD, and the knowledge they deserve the care they're being denied. 

 I'm absolutely gobsmacked there aren't more vets delivering justice of their own.

 SHOCKED.

And I'm really really ashamed this is happening to our Vets.  They deserve so much better.

Lighter
 

sKePTiKal:
I could stand accused of being upset, merely because this is happening to MY guy, Lighter - but there are so many more. Here's the deal - you CAN'T just shop around for another VA or hospital. Against "the rules". There's been talk of changing that - but it's still a 16 form process, and months wait just to get a second opinion. It was explained to me, that when the gov't "owns" you - you are at their mercy, and have to be tough to survive them too... I tend to choke on that word "owns"; to me, that reeks of slavery. No one's "patriotism" can balance that, IMO.

I did see an interesting article yesterday; criticizing the last Dem debate participants for barely mentioning the VA. But also proposing some changes which would CERTAINLY help a lot of former service members. Primarily, allowing them access to telemedicine - contacting an actual doc or nurse from a distance. One guy I know lives in rural S. Dakota. It is a 3 hr drive (one way) for him to be at the closest VA hospital to him. Fortunately he's an experienced doctor himself.

I went off to the studio myself; the plan was to start working on a sewing project to replicate a WWII jacket for Buck but I ran into issues trying to find the proper authentic notions: zippers, button, etc. Olive drab velcro. Next thing I knew, I was checking out websites for support of military wives. Mostly managed and offered by other military wives.
DOD itself, mentions "injuries" and caregiving for returning injured service members; the catch is the ONLY thing discussed is PTSD. I understand how important that is; but golly gee guys... these soldiers get shot, blown up, and even run over by equipment. Why no discussion of physical disabilities?

Hol and her friend John gave me a couple options for buying those notions; one is a Hollywood costume/wardrobe expert and the other was a maker's web forum. Lots of re-enacters there. I'm using an actual authentic jacket as my reference; I considered pulling it apart to scavenge pockets and such, but on closer inspection there are a LOT of pockets. So Buck will get both of them for Christmas. (He likes it when I make him things; not so much me buying him gifts - but he IS letting me send him non-traditional, herbal medicines that I thoroughly research and offer as a substitute. Always with the caveat that it may not do a blessed thing to help; and how to take it so as to avoid any allergies or severe side effects.)

So, last night, we addressed the mortality rate of people with these kinds of injuries and medical devices. And his frustration over needing the one thing left on the list to be fully functional again (AFTER getting his infection under control). The way I see things (and Hol too) is that anyone can pass at any time or age; and that I can accept the hardships of his situation... with the one condition, that we squeeze every single ounce of happiness and joy and dancing out whatever time we have together. He complains a lot; is easily frustrated by all the obstacles - and refusals - to treat the infection. That's expected. Also, his focus on it too. But he can STILL choose to be happy and have fun NOW - because he is NOT an INVALID. I sometimes believe that this asinine VA system actually CREATES more PTSD for people. Definitely triggers people. But I'm comfortable dealing with that, with him. He is very considerate about not dumping emotionally on me. So, to help, I have to be very direct with my questions - even when all I can do is make him laugh or smile.

And as a result of that input, he actually slept longer than 2 hrs at a time last night. He won't use sleep medicines; they trigger all kinds of things he'd rather not dream about or act out in his sleep. I might suggest melatonin, because the sleepytime tea - camomile & valerian - isn't effective. He's trying to solve his dilemmas by thinking his way through it obsessively; and that keeps him awake at night. He NEEDS sleep to rectify the balance of his immune system (which is very strong in spite of the bacterial infection). That's my next workaround to outsmart the docs and help him hang in there - until he moves here, and has access to a better hospital system.

I keep checking in with myself on this decision; to get involved with him in the first place. Making sure I'm not over-extending myself or setting myself up to get blindsided by something. We're starting to discuss logistics of the future move, too. And that's helpful; we learn how to work together. Even as set in our ways as any two people our age will be. And it's VERY INTERRRRESTING (cue: Arte Johnson voice...) that after the initial smashing of intense emotion with him that I can see how we are weaving into an "us"... and that takes time...

the same way there was an unweaving of the us I shared with Michael. He is very understanding, when I mention Mike... and talk about some things. He lets me process, the way I need to. And he is very good at cheering me up, when I go to my "dark places" too. Very gently & kindly for such a big, badass tough guy.

Hopalong:
So complex and so painful.
If I follow...a provider believes B does not have a bacterial infection.
You and B are certain he does.
But only that provider has access to confirming lab tests which he cannot order cause of medical risk to B.
Am I following?
Don't want to head too far into the weeds without checking...

I'm so sorry that B is suffering so, and you by affiliation.

Could anyone have a deep and detailed discussion with an MD on B's behalf who might consider treating B pro bono?

Would it help for him to show up at a regional trama center ER?

Hops

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