health care hits home

I confess....I actually have a few real post ideas batting around in my head, but I'm not sure how much I can get through right now so will go more the update route.  The update actually does lead to a disturbing and apparently legal reality of the insurance world.  This is gonna be rambly...even for me...

• The Body Stuff

I've been really struggling.  I think my body has just gotten too overwhelmed.  I did also switch off some meds and that's always a bit rough on me for some reason.  The Pain Clinic folks actually had planned on moving me on to another one but I haven't done that yet since I'm still off-kilter.  I started having these very vivid memory flashes in the overnight hours.  The best way I can explain it is like a tape recorder in my brain.  I am awake, or close to it (Pain Shrink thinks I may be in a middle-state and not fully waking, which does make sense) but I hear conversations from the past just like someone was playing a tape of the moment.  It has been an odd mix....greeting family on Thanksgiving somewhere around 2006, both before and after my back surgery, and some very hard emotional conversations that were tough enough to live through the first time.  At times, a few minutes has just run on a repeat loop.  It has interrupted my sleep and some of the memories my brain picks make me emotional and more ill. 

It is just plain odd.  Given timing, the first doc I mentioned it to was the new physiatrist (aka physical rehab docs...actually where I started with back stuff) my GP sent me to....I think he's fed up with the Pain Clinic not making progress and he likes this guy.  He was very nice but wanted to make sure I looked into the "tapes" before doing much else.  I'm in the process of doing that...and have added in sometimes hearing my own thoughts "aloud" in my head....like talking to myself but I'm not (even harder to really explain).  I'll see someone about that stuff Thurs.  I also will go back to the physiatrist on Tues.  He's pulling an MRI to look at options and may send me a good bit away for diagnostic tests if needed.  He did recommend trying my old post-op brace a few hours a day which does seem to help. 

Things got harder this week though, so I haven't done as much of the brace time as I'd have liked.  I got really upset and stressed on Wednesday (which I'll get to in the next part).  I often get horrific headaches after getting emotional.  I think I also had a bit of a bug.  Put together with everything else, including poor sleep, I got pretty ill for a bit...."bathroom floor" kinda ill.  As a kid, I ended up in the ER several times when a belly-bug hit and I got dehydrated....I was very much going in that direction with a good 48h with no food and very little liquid.  But....

• The Scary Insurance Stuff

The added wrinkle...the starting stressor that also exacerbated it all...I couldn't have easily gone to the ER no matter how bad it got.  Because I have no health insurance.  In fact, I hadn't had it for two weeks before X sent a note saying there might be an issue.  He got remarried....which is utterly fine by me emotionally but led to me being booted without warning.  I'd been on his insurance at a family rate, which MA law provides for after a divorce (I paid my share of the premium by sending him a check), but apparently the remarriage of either party terminates coverage.  I knew it would terminate if I got re-married, or had other access to a plan, but really never knew what would happen if he did.  I certainly never imagined the insurance company could revoke my coverage WITHOUT A WORD OF NOTICE.

It took a bit to calm down but I called within a few hours of X sending a note that HR had told him I could no longer be on the plan.  The lady was very calm and never mean but also very very clear.  I called on 8/29.  I had not had coverage since 8/16.  They had not sent any notice.  She said she would send some info and I can re-enroll.  I can also get retroactive...which I need since I had a couple doc appts the week the coverage terminated and have three more next week.  But right now, I'm uninsured. 

I know there are times and places that would have to have taken me if I showed up even without insurance, but I really got much worse with the idea that I kind of COULDN'T go to the ER for the severe health mess of the latter part of the week (sorry, that sentence is awful...my head's still not fully here).  They'd have checked when I got there and have found me uninsured.  Heck, that could have happened BEFORE I had any idea I wasn't covered.  I had to pick up some meds later in the week and CVS got a coverage rejection.   Luckily it wasn't pricey...and they can reimburse me w/o too much mess IF I can fix it w/in two weeks (not sure I can given that they just mailed the paperwork and need some signatures already).  I think the doc appts will be okay too....they don't usually run the insurance "live" like an ER or a drugstore would and hopefully the slowness of billing ends up working in my favor (they do always have you sign that you'll pay if your insurance doesn't)....two appts are places that know me so that should help too if there's a delay or I need them to re-send stuff too (more proof that you need to be nice to folks...the CVS people were super-kind and I think it helped that they know me and that I'm polite).

So...I'll have to suck it up a bit and pay a crazy premium until I find something else.  Not sure how all the continuing treatments will play in...there's been mention of a second surgery too given the total mess that is my back.  It'll be $880 per month.  I'm getting some help on that...and appreciate that help on the stress....but the whole thing makes me mad.  HOW DARE it be LEGAL to REVOKE insurance without any notification.  I won't bother thinking through X's role...whether he knew, whether he should have known...I can't ever know much there and have had folks argue both sides to me.  But I do know that it is not fair that the company's actions were all legal.  I know I am not someone who can risk being without coverage....no one should HAVE to risk that but I've always made sure I didn't have even a short gap because my body has never been kind. 

I have long favored health care reform...I don't know how to do it, I don't pretend I can evaluate policy, but I know it needs to be fixed to help people protect their health without risking bankruptcy.  I know it needs to include a lot of financial reform too.  I know personal accountability also matters a lot.

And now I know it all even more. 

(again, sorry this is horridly rambly....i wish it were better since i do hope people see this..my brain isn't fully restarted but i still need to get it out there).

P.S.  I want to get my head on straighter and my words back in shape but may put together a Change.Org petition when I do about forbidding revocation without notice.  No change in what makes revocation permissible....that'd add controversy...just a rule requiring 30 days notice before recocation, esp when it is not due to any action by the insured.  Maybe also require the insured get notice about options, even if it is a crazy premium increase, so they can make a choice before revocation rather than have to deal with it after (or be able to look at alternatives to avoid a gap...which would help make options real by preventing someone from incurring bills w/o knowing the policy has been revoked....kinda forces you to continue the old plan if you need those covered since a new plan isn't likely to give any sort of retroactive benefits).

still reading!! Prisoner of Heaven & The Virgin Cure

Ever So Slow, But They WILL Get Posted --
Assorted playing with medicines, some causing problems that gummed up my brain and then got off it which fiddled with my brain an body more.  So my "to read for review" pile is big and there are a couple in the "read but not reviewed"....always a challenge when it gets delayed too much and I lose the initial "feel" of the book. 

But, I've got a bit of time...oddly post-Ambien, pre-it-kicking-in (1-2h) for me is ofter my clearest time of day.  So....

• Prisioner of Heaven by Carls Ruiz Zafón

This is the third piece of a four book series that definitely isn't in a true linear fashion.  I'd read the first book (The Shadow of the Wind) but not the second (a prequel, The Angel's Game).  PoH occurs after Shadow but much of it tells a story that I think connects the plots and people of the to prior books and lets them overlap.  I may reference things that would be a spoiler to Shadow...I might for Angel's but can't know...so that's the best warning I can give.

Daniel works in his father's bookshop.  He and his wife, Bea, live upstairs with their baby boy.  Fermin works in the store and has a much deeper relationship making him close to family (though more of how that came to be is in this book).  A man comes and buys a pricey book and asks Daniel to take it, with an inscription, to Fermin.  The eventually leads Fermin to share the story of his time in prision (in an era with a "thought police" piece of the culture).  He meets folks there and we also see how he gets from the prison to the time he met Daniel.

I very much enjoyed Shadow....I gave it 4 stars but didn't write any details.  I think it was kinda an easy one to "grab" me since a big feature is a huge, hidden library called the Cemetary of Forgotten Books.  The book he picks motivates much of his role in the book.  There's also a lot of intrigue and mystery about motives and connections...I didn't DISLIKE that, but it wasn't the draw.

This book is good.  It is a lot about how we become who we are with a prision holding some innocent folks, some thinkers/writers, and some who just plain did the crime.  There's a lot of questions of love and loyalty in there.  The past story, and remedying a situation it created, is crucial to moving Fermin ahead in his life and starting his marriage. 

But, still, it didn't truly grab me.  Not sure if I'd have read it w/o the Shadow experience (and know idea how it might have mattered if I read Angel's).  Taking it as its own book...3 stars.  It is intriguing with a push on the role of gov't and intellectualism.  I do like that stuff, but it really never captured me fully.  Still, regards and thanks to Harper for the copy!

• The Virgin Cure by Ami McKay

This was one I was excited to be offered by Harper and hopped right on the request a review copy.  Part of that could be it might be one I'd feel odd buying...that's not "right" but it is honest....I think it was about the idea of marketing a book about a culture that marketed young girls (though, certainly worth knowing this stuff is in the country's past).  But I def wanted to read it given that I later followed-up and happy to see more become availale since I hadn't been able to snag one at first.

Moth is living with her mother in a rough, poor, slum in 1871.  She was pretty sure her mom would eventually sell her into service but thought she had a little longer and was just woken up and taken off at age twelve.  The woman she is taken to becomes increasingly abusive, with concern escalating that it might get worse.  She escapes with help of one friendly, kind person.

Moth ends up on the street.  She tries a little stealing and a lot of begging and eventually meets a girl who takes her to the home of Mrs Everett.  This is pretty much a training brothel.  The girls spend time learning the art of being a good date to a wealthy man, both in terms of being a partner at public events and in the home's sitting room.  The plan is for one man to eventually pay a large sum for the chance to take her virginity.  The girls dream that this will be about love, and that they'll find a man who'll eventually take them in (or at least after a few more "clients"...fee is lower for non-firsts). 

Not hard to imagine, the glamour of the clothes and social life draw her (and others in).  Also, not surprising from our view, it is never that simple.  One big risk, that gives the title, is that some believe that sex with a virgin will cure STDs (even though Mrs Everrett promises that is not a worry in her home). 

I liked this.  I do feel like there are a lot of places that I wanted more (the friend who helped her escape the prior job, some of the girls in the house).  Dr Sadie is a woman doc who tends to the girls at the house and tries to talk them out of it....I'd like much more of her, although we do get some shots of her life).  

Honestly, right now I'm feeling like a 4 but I am 90% sure I was at 3.5 (and maybe even 3) before.  So I'll go 3.5 and round up simply b/c it stuck with me a bit.  I think part of the lower initial rank was not feeling drawn to it nightly, but that's appeared to come on the far end.  Portrait of a tough time that's not nearly so distant as it sounds (and is still part of lives in some places...including, in various forms, in the U.S

checking in: weak, worn out, but okay...and a recommendation to others with chronic pain

I confess...things have been rough.  The pain has been insane.  Constant, take-your-breath-away, 9 of 10 on the pain scale if I dared move a muscle.  It has also been having rough cognitive effects.  I've always been able to count on words and being able to write but that's been tough this past week.  The ghost-writing is taking eons...like 5 hours to do what used to take 90 minutes and two hours just to reword two paragraphs from a news report.  On the worst days, I haven't been able to finish a sentence aloud without a struggle.  I won't admit how many times I'm hitting the backspace key.

Today's not as horrid in the words world so I wanted to visit the blog-o-sphere to confirm I haven't fallen off the planet.  But I'll need forgiveness for not being at my most eloquent.

I've mentioned it in passing, but I've been seeing a Pain Shrink at the pain management clinic.  I cannot recommend it highly enough to chronic pain patients.  I am not generally a talk therapy kind of girl.  It just doesn't work for me.  I spent some time in couples' therapy with X.  At one point the counselor noted therapy seemed to be similar to my workouts...I did it hoping for results but never truly loved the time itself...the word "endure" came up in there.  X suggested in a session that he thought I needed individual counseling to process some old wounds.  The counselor said that some people find therapy actually re-traumatizes them, making old issues resurface and making them worse instead of helping to heal.  I always understood it could be wonderful and helpful to the right person.  Just not for me.

Pain counseling is really different.  In part, I think it is because it is about problems in the here and now versus stuff in the past that I've muddled through for long enough in my own head.  It's also just helpful to have someone who "gets it."  People can be incredibly supportive...I couldn't ask for a better partner than my Military Man...but it just is hard for anyone to fully understand unless they've been there.  Or, I suppose, unless they are really trained as a specialist and have decades of experience under their belt.  Pain Shrink really only works with pain and rehabilitation (mostly from physical problems, though he's seen substance recovery too).  He's seen it and knows what chronic pain does to a person's mind and body.  He's possibly the most helpful member of my ever-growing pain team (adding a new doc soon...).

He stood at my side when I fought the first, evil Pain Doc. He told me I wasn't alone in finding him unsupportive and even cruel....that it wasn't me and I needn't accept his verdict that I'm too wimpy and need to just deal with being bed-ridden.  Before Lady Pain Doc returned from leave, he said he'd help me find another clinic if I needed to...that he'd try to help me get in since sometimes pain docs refuse to take a transfer, though he warned it would be a decent drive so wasn't ideal and encouraged me to hold out to see when Lady Pain Doc might return.

He reassured me that needing pain control meds was nothing to be ashamed of, that he'd seen people who fit the "drug seeking" label and that I was not one of them.

He's told me not to feel like I should be ashamed of needing to wallow sometimes.  Nor should I feel like my pain is less true than a life-threatening issue, that it was normal to feel like there's a pain hierarchy but I shouldn't get caught up in it and that my pain was still quite real.

He told me it's normal to have days when I can't fight.  He said there's nothing wrong with sometimes staring at the ceiling, unable to do much else, and wishing the ceiling would fall in.  He said that's entirely different from being suicidal (though said to call if it ever went in that direction).  He said it is normal to sometimes want to get away from a body that hurts all the time.

He said he's seen surgery wards that give everyone a teddy bear and encouraged me to hold Teddy Bill without shame when I am lying in bed and hurting.

There's more, but I'm running out of word-steam so I'll finish with one that kinda made me cry, even if it feels a bit too much like tooting my own horn (how sad that it is so hard to praise oneself).  It is something that I think every chronic pain patient should hear...

He told me people ask how he does his job, seeing people in horrible pain day in and day out.  He said he told them that they wouldn't believe how amazing pain patients are, even if we have weak moments and days when we falter.  He said he had nothing but admiration for his patients, including me.  He said he was in awe of the courage I show, especially when I've pushed past all my limits to be there to see a dear friend get married and to help MM through a difficult loss. 

I haven't felt that lately.  I've felt all fought out.  He said that was fine too.  Which sometimes you need to hear from someone other than your Mom, Dad, and boyfriend.  After all, he's seen it all, he has a PhD in it, so it must be okay to be weak sometimes, and frustrated, and tired.  It doesn't make me a wimp (contrary to what the first Pain Doc said).  It's okay if some times the pain wins.