Three Items
1. Maggie's using Twitter.
@jochild
that is
http://twitter.com/jochild
to post updates.
She says "I can manage 140 characters."
Her Twitter feed is totally worth reading. She's a poet, right? She gets a LOT into her 140 characters. *smiles*
2. Maggie probably won't be discharged today.
At the moment from reading the orders the Fill-In Doctor has left, it appears Maggie will not be discharged till at least tomorrow. We believe (but don't know for certain) that Good Doctor will be back tomorrow. Good Doctor is the one who has been standing up for Maggie.
Her physical strength gets stronger day by day. No matter when she gets discharged, going home will be very very hard. She will endure and survive; it is what she does.
3. We still need to raise $1500 (or more); we just have to see.
Maggie's Binder, a device she wears around her entire abdomen and back in order to keep the surgical incision from coming open, which makes it DAMN difficult to do many ordinary functions (as the Binder goes WAY up almost over one's ribs and down low to the bottom of the lower belly thus leaving one's entire middle in a splint) which means for the next two months Maggie will not just have big difficulty, pardon me, cleaning herself after using the bathroom, but she'll also find it difficult to sit up straight to use the computer (her little Netbook is different, and no, her work software won't load on her Netbook), to walk through her apartment to put away food or cook a meal, or any of the basics of life. She can lie down; she can prop against some pillows; with difficulty she can turn over. She can NOT ever ever ever put any fracking strain on her abdomen. At all. Or she might (literally) find her guts all over her bedroom, bathroom, or kitchen floor.
Thus DME (Durable Medical Equipment) for rails on her bed, rails in the bathtub, a higher toilet seat, and much other stuff. Maggie will need enormously higher quality food than she can usually afford (her regular food budget is $140 per month; yes, seriously. If you've ever had a meal or even a meal for two that cost $140 or more not including booze, raise your hand. Look around. Notice that over 80% of our readers have their hand raised. Thank you. Okay, put your hands down please.) and more medicines than she normally can afford (at best she can maybe afford $10 in generics per month plus another $10 in OTC medicine. That's on a good month. The rest of the time she goes without and suffers. I who have health insurance -- and I complain about my prescription drug copays -- pay about $120-150 per month on average for prescription drugs (which I must have or I'd be in the hospital or dead or unable to work and then in the hospital and then dead; like in the same situation as Maggie, so poor I'd be absolutely fucked plus pain beyond compare from the lack of meds... Most likely I'd end up, well, let's not even go there. *shudders*) Some months I pay $200-250 if I get extra sick or the doctors want me to try something new. The retail price of the medicines is around $2500-3500, I'm not certain; I've never really checked because the most I ever pay for a drug is $50, most are either $5 or $25. And being in the upper-middle class I can afford them.) Maggie will need cab rides to visits with her doctors, physical therapists, x-ray examinations on the surgery, at least some of which she'll likely have to pay for in cash as there's no way her Medicare will have come through by then. (We're working out how to pay for these services but some of them don't look good; if we can't pay for them it may be she'll just do without if we don't raise the money... which is how we got into this mess in the first place.)
Bottom line, we still need to raise much more money for Maggie.
My request is that folks subscribe, that is commit to a monthly amount via PayPal of $200, $100, $50, $20, $10, $5, mix and match. Or you can go to Meta Watershead and in the top right corner, hit the Donate button with any amount for a one-off donation. At Meta the Subscription buttons are also there for $5 to $10 monthly, to $20 or $50 a month, and for a number of you, $100 or $200 a month.
A choice: If you're choosing between a one-off donation of $50 or less and a subscription of any amount, please go with the subscription. What, huh? It's simple, really. We'd much rather have the certainty of knowing Maggie can count on that amount from you, even if it's only a large cup of Starbucks cappuccino or a dinner out. Or maybe a dinner out for two. *smiles* The reliability of being able to trust the subscription in the months to come means much more than a larger one-off donation now. It means stability. It means knowing Maggie has her bills paid every month. It means cash-flow.
Speaking of cash-flow, frankly the present-value of a smaller subscription over time is MUCH less to you than a really big one-off donation now. Now obviously we'd love for you to make a big subscription (don't kid yourself; feel free to subscribe to those $100 and $200 buttons, that's why they're there. I and I think two other people are on the $200/mo subscription. Plus I made additional donations every month.) but we're cool if you don't. What we're saying first is that the present-value to YOU is better if you give less each month than if you dig really deep and make a one-time really big donation. Plus that way you get to keep all that interest till PayPal sends whatever the amount is off to Maggie.
From our point of view, a bunch of monthly subscriptions means we can all breath a little easier knowing each month isn't a scramble for Maggie to survive financially. (And yeah, we've applied for all the various financial aid programs, federal, state and even local, but it's going to take at least half a year for them to kick in, and that's assuming all goes well. We have this on good authority from the financial aid/social worker at the hospital Maggie's in whose job it is to get this aid for people.) So for now, y'all... we ...are everything Maggie has financially.
Thus, from two and a half weeks ago until we reach whatever the financial goal turns out to be, $4,000 or a bit more (and we're just not sure yet; ye Gods how I wish we were) what there is is for me to ask you... Please:
Please reach out for Maggie. Step up and make a monthly subscription: $200, $100, $50, $20, $10, $5, or jumble them as you wish.
Your generosity to date has been overwhelming. Not just with money, but with your good wishes, with people offering to help -- we have one person running errands in Austin, y'all have donated not one but two Netbooks (and maybe a third, not sure yet) and we're still figuring what to do with the extra one, and most of all your heart in being there, talking to Maggie on multiple blogs and emails blows me away.
She, and I love all of you so much, are so deeply moved by who you are and what you are doing to help her. As a group of people and as individuals you have really stepped up. You amaze me; you inspire me. Thank you for the gift you have been, and for the gift and contribution you continue to be to Maggie. I honor you for who you are and for the difference you make. Maggie is alive and getting better each day and it would not have happened without her friends and all of you being the difference in her life. Thank you for being you and for loving one another.
Every religion has some version of the Golden Rule. You my precious readers and friends, are living examples of how both the Practice of spirituality and the Golden Rule are designed to work on the ground. The Blessings of the Gods on each and all of you, your families, loved ones, and those with whom you work and associate.
Cross-posted at Meta Watershed and Group News Blog.
Sunday, November 1, 2009
Sunday Morning Maggie Jochild Update
Wednesday, October 28, 2009
"Mama's On The Job"
The Nursing Home reviewed Maggie and said "No."
The Good Doctor is now (there was some question) IN CHARGE of Maggie. This Good Doctor makes the decision as to if/when Maggie will be discharged. Earlier today, while the Nursing Home was still up in the air he said, "If it were up to me you would not be discharged." Heh. Good things come to those who wait.
Once control of Maggie reverted back to the Good Doctor, i.e.: once the Nursing Home was no longer an option and thus the only option was keeping her in the hospital v. discharging her to home/the street, the Good Doctor took firm control and wrote orders consistent with his speaking earlier today (and the days before.) The wonderful part of this is, before it could have just been talk -- who knew, really? It isn't as if shining on a poor fat female patient costs you anything. To the contrary, with hospital finance breathing down his neck, the Good Doctor is putting his professional self at risk when he steps up and insists Maggie be cared for as if she were rich and had insurance. In doing so he demonstrates the value of the Hippocratic Oath. He's putting himself on the line for Maggie; she's a real person to him.
The Good Doctor wrote orders: 1. Maggie is to stay in the hospital till at least Friday (which not only means she can continue to get better, it means she can relax for a few days without worrying where she'll wake up the next morning); 2. Maggie is to have two (2) physical therapy sessions a day (double what she has now); 3. PT is to continue to note her ability to perform the functions of daily living (as she can't be discharged in the Good Doctor's view till Maggie can perform the functions of daily living...He said to her this morning, "I know you can't perform daily functions yet. If it were up to me you would not be discharged." And then everyone got the word it IS up to him *laughs* But really, thank the Gods it IS up to him. Just like University Hospital being on ER diversion, the Good Doctor being responsible for Maggie may well turn out to be one of those key turning points which we look back at and say, "This, this right here, this saved her life and/or made a HUGE difference in the final outcome"; 4. Reevaluate on Friday to see how Maggie is doing.
*is oh so happy*
Maggie requests a reliable person to run random errands in Austin; if you're that person, please contact Jesse Wendel.
Maggie's Mama has come through. 'Cause this morning we were damn sure either Maggie was going to a BAD nursing home (the one they were trying to send her to really blew; it was -- and is -- especially bad for bed sores and pneumonia. Not to mention it keeps screwing up patient meds and can't quite keep the sheets clean and sterile. All this according to the latest report I've read/of which I have a copy.) But charity-case Maggie wasn't good enough for the nursing home.
Or Maggie was going to be kicked out of the hospital entirely like to her home or the street and they didn't care where, which, given she can't even climb into bed after getting out to use the toilet and she doesn't have a bedside toilet, would have been an utter disaster. But that didn't happen either. We didn't (quite) panic. We kept cool and waited, waited for a miracle.
The closest we came to doing something is a) prepping y'all to make phone calls (thanks y'all) and b) when the Good Doctor stopped by yesterday while Maggie was on the phone with Liza, as Maggie got off she said, "That was Liza, a friend of mine from back East. She's checking in for this large group who want to know how I am." The doctor went, "Huh?" Maggie smiled and said, "Yeah. I'm a nationally known writer and blogger. People all over the United States are trying very hard to find out how I am. It's a really big deal." And then she dropped it and moved the conversation on. However, Maggie reports, she could see it got through. That was yesterday evening. And now today we have this. To be fair, he's always been the Good Doctor, being wonderful with Maggie, standing up for her. But in the last couple of days he's really come around, taking a clear stand for her in a way which he was not three or four days ago.
Maggie's in the hospital till at least Friday. *smiles -- is happy*
Cross-posted at Meta Watershed and Group News Blog.
Maggie Jochild Wednesday Quick Report
Fast report.
This may be the only report for today, not sure…
The hospital has asked a not-great nursing home to accept Maggie; the nursing home is evaluating her (either via a records review or perhaps in person, we’re not sure) which will probably take the rest of today and maybe even into tomorrow. Till we/the hospital get a yes/no on accepting Maggie from the nursing home, she’ll stay in the hospital. The odds are well into the 90th percentile she’ll be discharged, either to the nursing home (if they say yes) or to her home/the street (if the nursing home says no) within at most 24 hours of the nursing home saying one way or another, which could be as early as later today but more likely will be tomorrow morning.
While Maggie has half her stitches out and healing continues to go well, and while this morning she managed to get OUT of bed on her own, she could not get back IN to bed. In no way can she perform on her own the tasks of daily living. We now know who has the discharge authority yes/no over Maggie. We are sure he is under enormous pressure to discharge her from the financial people, even though she is clearly not ready to be on her own. Even so we are NOT going with the massive phone call storm to the hospital (which I mentioned over at DTWOF), at least not yet. We’re still waiting to see what the nursing home says; Maggie being accepted to the nursing home is the best bet.
Thank you for the emails and subscriptions. Please keep them coming $200, $100, $50, $20, $10, $5, mix and match. Maggie told me ten minutes ago to tell you how much she loves and appreciates you. And that she’s getting better each and every day. Later today she’s got a big PT workout. She has faith everything will work out.
For folks whom have asked about applications for welfare, Medicaid, and so on, good news (although it will take quite a while.) All of those applications are in or in the process of going in for Medicaid, welfare, and other appropriate programs.
The first time through, everyone gets turned down. But on the second application we are told, Maggie should be approved without much trouble.
The hospital is working closely with the person handling Maggie’s finances while she’s in the hospital, to see that this happens successfully. (It’s the only way for the hospital to get paid at all. They have a good track record with this as their own self-interest is at stake, so I’m quite optimistic in the long run.) In the short-run, Maggie has no money, no job till she’s well, so for the next two months we and the donations we raise for her are ALL that she has. *sighs*
Next time some damn Republican banker tells me that donations are the answer instead of government aid, I’m taking him to Austin and showing him Maggie as exhibit A. After two weeks of asking and begging and with Maggie being relatively well known nationally as these things go, we’re still only at half what she needs. And now the Republicans & Sen. Joe L (Ind-CT) are trying to blow up the Public Option on Health Care. Arrrrrgh!
Next update no later than tomorrow; sooner if there’s a major change. In the meantime, please contribute $200, $100, $50, $20, $10, $5, or in any combination.
Cross-posted at Meta Watershed and Group News Blog.
Tuesday, October 27, 2009
Swapping Class Lessons
Entitlement is a concept which has been misunderstood and criticized in feminist/liberation ideologies. It’s an attitude we are born with, as is altruism, but just as altruism has been distorted by American mythology into “self-sacrifice,” entitlement has become conflated with selfishness and arrogance.
An authentic sense of entitlement, however, is not selfish. If you believe there is enough to go around for everybody (which is possible when capitalism and Christianist lies are snipped from your brain,) and if you have achieved enough emotional maturity to love yourself/your community without depending on power imbalances for security, expressing entitlement is an act of mass social empowerment.
Unfortunately we have meager examples of what this actually looks like in our current government or pop culture representation. Those of us trying to define it for ourselves -- say, a fat crippled family-less poor dyke currently receiving high-level care as an indigent -- must stay in continuous conversation and exploration with those we trust to keep identifying the next best refinement of definition.
And of course the major obstacle to clarity about entitlement is class conditioning about which America is in deep denial.
I have been/am being kept afloat daily by a network of middle-class institutions, working-class smarts, and a few specific individuals who will not let go my hand.
One as you all know is Jesse Wendel, raised middle-class Mormon who used the military to escape LDS paranoia and family violence. This is not the most obvious ladder to use, but someone who can manage to stop panicking at the sounds of hounds in his own head long enough to carefully select the next solid-looking hummock can pick his way across any bog. Plus there is a basic Mormon value of service to the deserving, and if you buckle that onto a new template of who is “deserving” you get the Gilliard kind of liberal that Jesse is. His instance of my value was in my head when I finally staggered to the phone last week in the middle of the night and gave myself up to the machinery of possible public humiliation and loss of autonomy. I left the Gillchrist Peninsula; I hitched a ride west from the 9th Ward, into the care of strangers. But I knew Jesse would find me wherever I landed, and I acted like I mattered to everyone I met. To do so meant completely betraying my class training and my families’ choices.
Equally crucial has been Martha Chesnutt, my friend since 1980, who is handling all the finances and working on getting me disability long-distance from Atlanta. Martha and I lived together years ago and she has been the older sister I would have chosen for myself. Our ancestors arrived in North America via Jamestown, and our shared southern roots are tangled. Her line had been as consistently owning class as mine has been poor. But we came out into the crucible of lesbian-feminism where, despite revisionist rhetoric to the contrary, many of us learned to deal with class and race in a way I do not see being done as well now.
Martha is a class ally to me whom I trust more than anyone else on earth. She’s done the work, keeps doing it, translates across the boundary as earnestly as I do, and for over a year she paid my rent, until her own difficulties kept her from doing it any longer.
Martha and I also bore witness to one another as we each in turn fell in love with and partnered to women who, despite all efforts, became abusive. We stayed close friends as these long-term lover relationships degraded us and challenged our ability to self-love. Imperfectly, mentally, we figured out how to just have faith in one another despite watching the other make self-destructive choices. We somehow kept returning to “any difficulty I have with your difficulty is still my difficulty.” The friendship survived where all other connections did not.
I can tell Martha anything. However I use this gift sparingly, because I see the wound in her when she faces some of my reality.
Martha has refused to ever give up her sense of entitlement. She blazed a trail in that regard and continues to often take a machete to the underbrush a few yards ahead of me.
I once wrote in an essay that I felt like my family and I had been left for dead. I still feel that way about them – I mean, they are all dead now.
But because I’ve chosen to reassess every class lesson handed on to me by my people, rejecting toxic beliefs for those of the middle and owning classes where I could see the sense of it, I’m the survivor.
About a month before I called the paramedics, Martha said to me, with all the courage she could muster, that she was afraid I was repeating my mother’s pattern of hopelessness about individual survival. It was an extraordinarily difficult talk, but I have to admit the seeds she planted helped me call those paramedics instead of dying alone.
Thank you, Martha, Jesse, Liza, Genia, Kat. Thanks for getting close enough to see/hear my truth and letting me see yours so I might learn from it. Thank you out there who believe I matter.
And thank you to my family, for taking me as far as they could before their own sense of shame dragged them underwater.
Cross-posted at Meta Watershed and Group News Blog as dictated to Jesse by Maggie.
Maggie Jochild Still In Hospital Monday, Barely
Windows Netbook Donation Needed. Financial Donations Report!
Just a quick report as I’m in so much pain in my right hip I’m not at work today (this was written Monday afternoon, even if I’m posting it Tuesday morning.) Hurts to sit up, hurts to write. Hurts to do anything but sleep.
Maggie was NOT discharged over the weekend. One of the great things about the hospital she is in, is they apparently are big believers in what is called the TEAM Concept of Care. This means that in this hospital -- the best surgical hospital in Austin where the rich folks go for their surgeries if they don’t fly in their G-Vs to Houston -- unlike all the other hospitals which are not nearly as highly ranked nationally (oh yes, this hospital is NATIONALLY RANKED; what, you thought I’ve been pulling your chain, polishing your knob, yanking your Petunias, these last 10-12 days when I’ve told you Maggie is in the BEST surgical hospital in Austin? Oh, say it isn’t so Gentle Reader…)…unlike the other, not nearly as highly ranked nationally hospitals, the hospital our dear Maggie Jo lies recovering in, does everything in TEAMS. A Team consists of everyone involved in the medical care of a patient, plus a representative from the financial side of the house. Everyone gets a fairly equal voice in what should happen. This method of care compares to the less successful hospitals (so far as patient outcomes go) where the Doctors and the Finance People (and more and more it’s the Finance People) make the calls on what happens. Not so in the nationally ranked facility where Maggie is working so hard to recover.
That Maggie is working SO damn hard impresses the hell out of everyone. Today for example she walked 50 feet with a walker, her PT person right next to her to try and stop a fall just in case, but she made it! Totally wiped her out, she told me as 50 feet is an amazing (and very tough) distance for her to walk… Her stitches remain in (nope, the surgeon changed his mind last Friday and left them in. And today he decided to leave them in till at least Friday this week) with the Binder which is like a large corset still constricting her abdomen tightly keeping the surgical site intact, the stitches from coming out, and everything all good and clean and perfect.
Because Maggie is working so goddamn hard, because she’s working harder -- in the judgment of her nurses and the PT/OT and respiratory folks – all of the aforementioned TEAM members and even some of her doctors are all LOUDLY saying, do NOT discharge Maggie. Why, they say?
“Maggie has no support, no one to take care of her. If we discharge her for, let’s face it, financial reasons” -- and they glare at the financial guy who is pretty much coming around to see things from our side anyway, but they still glare at him we’re told – “we’re only going to see her again inside days to a week when her sutures come loose, the incision bursts open (the surgeon gets all stuffy at this point), she gets a massive infection and that’s if her insides do not spill out all over the floor, and of course with the massive infection she’ll get an even larger fever and become dehydrated. Hell, she isn’t even able, no, scratch that, she is UNABLE to even get in and out of bed by herself let alone make it to the toilet. Without any money to hire a nursing aide, no charity bed for rehab for the hardest working most deserving patient any of us have seen in forever. How can we possibly expect Maggie, with a Foley Catheter in place no less, to take care of her self all alone? It’s impossible! Hummph!”
This opinion is slowly gaining weight in the TEAM approach. *smiles*
On the other hand, finance still wants her out, although he’s being less adamant about it all. That said, there is a genuine, real chance Maggie may be discharged Tuesday. No promises or predictions one way or the other. It could go one way or the other. *sighs* I’m not going to panic. We will see and what happens will happen. But I think (and hope and pray) we have enough medical weight on our side, that with the TEAM being pretty damn pissed off at this point about Maggie’s overall condition, that a discharge won’t happen till Maggie’s truly ready. Furthermore, Maggie is ready to very respectful and appreciatively, strike, should anyone try to kick her out before her body is at least able to handle the basics of living alone: getting in and out of bed without ripping her stitches out (including NOT straining her abdomen which her PT person insists upon, as does her surgeon); since she doesn’t have a pull thingy above her bed to haul herself in and out of the bed with, that will be hard; cleaning herself; going to the toilet. Also walking to the kitchen; watching back from the kitchen; making a meal; feeding the cat; going all the way from her bedroom to the front door, getting groceries, taking them to the kitchen and putting them away before the cold stuff rots, then getting back in bed, all without falling over and hurting herself or ripping out her stitches or splitting open her abdomen.
If she can not do ALL these simple acts of daily living, she can not go home. Are they going to send her to live on the street under a newspaper? Seriously; what do they intend to do, send her to die, now that they have saved her life?
As she keeps telling people, “I live with a cat but she can NOT change my Foley.”
Financially Maggie and I and Martha (who is handling the money) deeply appreciate the money given so far. We are roughly at half-way. So far slightly under two-thousand dollars have been donated. We need to raise four thousand. $4K allows Maggie two months off work, the medicines she needs, some healthier foods, some (but not all) of the durable medical equipment she needs such as a pull thing above her bed. Plus paying rent electric, water, food, cat food, taxi rides for outpatient, a little home health care, and so on. The absolute bare minimum with zero margin for error and no reserve (and ya always need a reserve; this number doesn’t have one) for the bare minimum she’ll need if everything goes perfectly (and there are always fuck-ups (this assumes no fuck-ups at all) is $4 grand cash in emergency donations/additional subscriptions. It does NOT include any subscriptions/donations existing prior to Wednesday 12 days ago when Maggie went to the hospital. We’re assuming all of those remain intact. If any of those get canceled, we’ll need more money. On the other hand, half way there, pretty much. So hey, far out and good work everyone! And we have a little room to breathe. It isn’t as if we need to have all the money tomorrow. We needed a bunch of money last Friday as we thought she was being thrown out Friday or Saturday, which would mean we’d have to hire a nursing aide right then as we had no bed for her and there was no way she could go back home. So we were going to put her, well, never mind. The point is, we now have a little more room. So please, take a deep breathe, congratulate yourself and everyone else on the great job we’re all doing so far.
Then, dig down and please donate more. We’ve got $2,000 and change to go. *laughs* If you haven’t donated yet, heh, opportunity! We're asking people to contribute from as little as $5 to $10 monthly, to $20 or $50, and for a few of you, all the way up to $100 or $200 a month.
Coming up still today, another post from Maggie. It’s amazing. I think one of the best pieces of writing she’s ever done. (I feel like a link in a chain, smuggling the writings of a renowned Russian writer out of the prison camps to the West. And honored to take her dictation.)
Ahhh… Maggie needs a Netbook Computer. She has NO Internet access. Getting her a Netbook so she can surf, email, and write whenever SHE wants to, not have to write by hand and then dictate to me, is able to check in on her friends and their posts, can check in at GNB and Meta when she wants… She’s cut off from her WORLD. It would mean the world to her if we can get her access restored.
Can someone please, please, pretty please with love and strawberries and real sugar on top please donate an inexpensive Microsoft compatible Netbook to Maggie? (Not even a laptop. She doesn’t have the strength to hold a laptop.) It needs to be SO light that really only a wireless-enabled Netbook will do plus also a Netbook is the right form factor. Even a very light-weight laptop would be too big; she wouldn't be able to balance it, and a telephone would be a new OS to learn plus you really can't browse on them. She needs precisely what I'm requesting and not anything else. Please.
Note: I don’t mean to offend any of y’all whom are huge Mac fans. -- I’m writing this on a MacBook and can hardly stand the wait till January for the new Apple Tablet, but that’s not important right now – I also don’t mean to offend fans of other OSes such as various Unixes. The thing is Maggie only knows Windows. Period. Full stop. In her current mental state -- able at her current best to think two perhaps three hours ahead when she isn’t physically wiped out which is much of the time, and she can handle perhaps five minutes ahead then -- I am NOT absolutely NOT pressing her in any way not critical to her health. An OS holy war is not critical to her health. OS discussion ends here.
Maggie needs a Windows-version Netbook computer. Having one will give her autonomy in a major way. This will make an ENORMOUS difference for Maggie in her physical recovery as well as her mental recovery (having to work with the keys will help her physical recovery; working with the thinking and writing and her peeps and writing again will deeply assist her mental recovery.)
If you can donate a Netbook, please email Jesse Wendel.
Thank you.
Again, please donate and get your friends to donate. Please contribute $200, $100, $50, $20, $10, $5, or in any combination. If you have a blog or know people with blogs, get the word out about Maggie. Link, link, link.
Anything I can do to help get the word out, be in touch.
Thank you all so much for your support. And bless all of you for that support. You mean the world to Maggie and myself.
Knowing you are there has on many a day, gotten me up and out of bed, I tell you true. Often it seems strange to me that me, big bad-ass Jesse, who walked through the toughest ghettos in the United States for almost a decade with nothing but a med kit, backboard, oxygen bottle and defibrillator, and a gurney. And my 90 pound gurrrrl partner (who could kick YOUR ass any day, twice a day on weekends, three times on pay-day weekends) could be brought to bed by pain. But it never, ever, ever stops. Even when I take LOTS of drugs, even then it doesn’t stop; it is simply overwhelmed and then the drugs usually overwhelm me also. It’s impossible to find positions not also painful. The best is this wonderful chair at work. In it I can sit for many hours and work and work and work. At home on my bed I’m able to roll this way and that, and to watch comedy shows which by making me laugh, reduce the pain. Sometimes I can sleep and then I don’t hurt, briefly, till I wake up, which I do every three hours around the clock to take pain meds. No, I don’t set an alarm. The old meds wear off and that wakes me up.
Here’s my point. In the midst of this, especially in the last two and a half years since my friends and I started Group News Blog, some days what has got me up when normally I’d have stayed in bed and wept, stayed in bed and tried to sleep, stayed in bed and watched television, or stayed in bed and read or done anything but moved a fraction more than I absolutely must (on what I call a BAD pain day, like today for example when I didn’t go to work as it felt as if someone had stuck a steel bar deep into my right hip and was bouncing bouncing bouncing up and down on the bloody thing with the blunt end quivering deep in my hip bone to the point where the scale I balance on is overdosing my meds v. screaming) and on some days precisely like today when normally I’d simply stay in bed and weep and pray for the day to end, on some of those days over the past two and a half years I have gotten up because I knew YOU were there, waiting for me to write, waiting for me to post, even just waiting for me to go check the PO Box and pick up a letter I knew was coming. So I got up and got to it. Sucked it up. Because of you.
You readers are the gift who quite literally, day after day after day, I get out of bed for because of you. If not for you, just as years ago when I was suicidal, then it was my four children whom I lived for, now I get out of bed and go enter into life because to do otherwise would be to fail to serve you.
The last eight to ten months (since shortly after the inauguration) have been very hard for me, physically. And I’m not fully back by any means.
But with Maggie needing me, with readers from GNB all of a sudden writing me and my needing to write them back, with other GNB writers suddenly writing again and the blog starting to pick up again (as I’ve said all along it would start to do about a year before the 2010 election) and with the joy of my writing posts for GNB all of a sudden descending upon me like grace from above, like how I feel after a wonderful bicycle ride with my daughters or son, I can only say that for the last eleven to twelve days, as totally wiped out as I’ve been each day, as utterly drained as I’ve been each day, I’ve been more ALIVE this past almost two weeks than at any time in the past eight to ten months of lying in bed in pain. Now I’m up and about (and in pain) but at least I’m about and out in the world (and in pain.) The fucking pain part does not change. But at least I’m out and in the world and alive.
Thank YOU (all of you, but I really mean YOU, the one reading this right now) for the wonderful gift to me which you are. And for everything which you are to Maggie, and for all which you do to her.
Speaking of which -- because this is how all posts right now must end, *smiles* -- please subscribe/donate to Maggie as much as you can afford: $200, $100, $50, $20, $10, $5, mix and match.
Also, I request you, Gentle Reader, donate a Windows Netbook for Maggie within 24 hours. Contact Jesse Wendel.
Thank you.
Oh yeah… Within a hour, a post from Maggie. *grins*
Cross-posted at Meta Watershed and Group News Blog.
Friday, October 23, 2009
Shabbos
“Once, in Israel, God appeared in the doorway, and we were sore afraid.”
Annie Dillard
Let us now set aside
our profane belief
in corpus control
and embrace sacred humility
With yeast and egg
seed and must
Let us bow our will
to that power beyond our texts:
How our mucus membranes
will repair themselves
Flesh will knit
oxygen will
hop the metro of our corpuscles
It takes dozens of muscles
tiny or bovine, from may regions
to evacuate our bowels
an expertise we possess at birth
Let us mumble our ignorance
Of bile and synapse
Why some tumors are checked
How our watery sacs constantly
adjust valves to keep us
one step shy of liquid or
sicca again sayonara
We are deluded
We are sore afraid
Let us join fingertips
with the love we can only express
by life itself
which is another word for love.
© 2009 Maggie Jochild
October 23, 2009, 8:20 pm
Cross-posted at Meta Watershed and Group News Blog as dictated to Jesse by Maggie.
“This is Las Vegas. We have our own way, and we just let people be how they are.”
This statement was given to me by Grace, Nurse of Nurses, here in the PCU. To be honest, Grace, or Amazing Grace as we call her behind her back, is one of two Nurse of Nurses here. The other being Extraordinary Emily. But for today I am blessedly in the hands of Grace for a third day in a row, sandwiched between two nights under the care of Ray-Ray, Grace’s best friend and the kind of man you wish was your own best friend.
But I digress. Easy to do here in Vegas.
The PCU is a netherworld between ICU, where gossamer threads of mortality are nearly visible in the always florescent glare and must be brushed by as delicately as Shelob’s Lair, and “The Ward,” the rest of the hospital. (In my Tramadol soaked brain I just commented “Ward, I’m worried about my beaver,” cracking myself up.)
Here on the PCU we are one firm step up from the ICU toward the remainders of our days but still dealing 24/7 with heavy damage done to us by other human beings or organisms which lack negotiation skills. Grace tells me she has three patients besides me and I’m the only person on the entire floor who is coherent. Which makes me something of a road-side attraction. In the midst of my extremis I’m having some profoundly human connections here in Vegas.
I saw half my abdominal incision today, about four inches of it. It’s grotesque but I touched it gently and reminded my belly I love it, all will be well someday. I did that for my Mamma after her surgeries, and now must love my self without her here.
Except, of course, she never left me.
More stories to come but hydrocodone, heparin, Protonix, potassium, mag sulfate, and levaquin await.
Thank you for being mine out there.
This post is about Thursday, October 22, 2009. Cross-posted at Meta Watershed and Group News Blog as dictated to Jesse by Maggie.
One Week After Emergency Abdominal Surgery Maggie Jochild Is Still In Intensive Care
Donations Desperately Urgently Needed or
Maggie May Be Sent Home, Tough Luck
Instead Of Surgical Rehab As Needed
Bottom Line:
Maggie Desperately Needs
YOUR Donations Now
For Reals, No Kidding
This One's for All The Marbles
The alternative is Maggie may literally be kicked out of the hospital with a big surgical incision in her stomach which isn't anywhere near healed, unable to walk (even to the kitchen or the bathroom) and sent home. If this happens her surgical wound WILL split back open, become infected, and if we're really really lucky, the worst that will happen is Maggie will get sent back to the hospital where it will all get fixed.
Those of you whom remember Steve Gilliard remember that he was out of heart surgery, was talking and recovering, and then the hospital pushed his fat black poor ass out of its expensive ICU bed because he had no insurance, threw him to a non-monitored cheap-ass ward bed...where Gil promptly got a major infection which killed him, even after they returned him to the ICU and did surgery to try and save him again.
If the hospital had only kept Steve in the ICU for another week he'd likely have lived. If he'd had insurance -- if someone would have PAID for that expensive medical shit -- then Gil would for sure have been left on the ICU no problem. And in the ICU a) he likely wouldn't have caught the damn infection to start with, but if he had, b) they'd have been all over the damn thing within 3-6 hours of it starting and BOOM, knocked it on its ass right away. 'Cause that's what they do in ICU, catch 'em small and knock 'em down. Instead, Gilly was on the ward, they missed it for days, and by the time they caught it it'd spread all over his body, thus he died.
We talk (more or less privately) how Gilly's death was partially caused by racism. Let's be even more blunt. It was caused by classism. If Steve had been a black man with money, a fat black man with good health insurance and a decent job, he'd likely have lived. He died because the hospital was not being PAID to give a shit.
We are facing down the very same problem with Maggie. It's the money, stupid.
Maggie is alive. And dead broke.
We need your help, for reals.
Maggie is in totally wonderfully amazingly health (with respect to her recovery that is; I'm not comparing her to an Olympic champion) in one of the best major surgical recoveries I've ever seen.
If you'd asked me two weeks ago if what has just happened could happen with Maggie would happen with Maggie, I'd have told you not only no but hell no, and listed 20 major problems which no doubt would go wrong during any major hospitalization/surgery time frame for Maggie. Yet here we are.
Two ways it all can go:
1. Get Maggie into a good Long Term Acute Care / Rehab facility.
a) This will require both a charity bed from the facility and/or donations from various sources in Austin. We have LOTS of sources working to make that happen. If any of you have high-level contacts in Austin who might be willing to help, please email me directly.
b) We'll also need SUBSCRIPTIONS & DONATIONS from y'all. Thousands and thousands of dollars both in ongoing monthly subscriptions and current immediate donations. Both are needed. If you need to choose, I'd prefer you choose to subscribe for a monthly lessor amount. How much you subscribe for monthly is your business. The current highest monthly subscription Maggie receives is $200 month; two people currently subscribe to Maggie at that level. Furthermore, both of those people sometimes donate additional sums when money is short. Money goes to the very basic needs of life: food; Maggie's food budget is $160 per month. Rent. Water and electricity, Internet, cat food, medicines (prescription and OTC), clothing. The pure basics.
2. The bad route: Maggie gets sent home alone to heal.
a) In rehab yesterday (Thursday) it was a triumph when Maggie stood for ten minutes immediately next to her bed WITH TWO PEOPLE HELPING HER. She is unable to walk to the bathroom ten feet from her bed. (She uses a rolling toilet next to her bed with two attendants and a nurse with her at all times as she's backing out a big one. The attendant rolls away and cleans up the toilet afterward. As for peeing, she still has in a Foley cath.
Question: At home, when she can't get out of bed without help, how is she to crap, pee, cook food (when she can't stand), wipe her bum, keep her incision clean (no attendent is going to come to her home for a home health care visit; she has no insurance and no financial aid or support to get a home health aid.) And so on and on. She's recovering wonderfully but she will need massive support and assistance around the clock for the next 3-8 weeks depending. (I'm not yet clear myself, nor are the doctors. The best numbers I've been able to get are, three weeks to two months of FULL-TIME care depending on how she does, part-time support for several months afterward.
Bottom line: She either gets #1 above, the Charity Bed or she'll become a lying in her own sickness infection case and the only question will be, will she become to infected to quickly to dial 911 in time? As part of #1 above we'll need enough donations from y'all to keep her home handled, lights on, cat taken care of, all the basics. If we can manage the basics for her then we're good.
Moving on...
Even though it is way early, because there's such a concern about money, her surgical team is removing her surgical staples TODAY (Friday) while she's still in the ICU Stepdown with ICU Nurses 24/7, Internists and Surgeons doing rounds twice a day, the entire intensive care setup but with the focus on rehabilitation, not purely on critical care.
Maggie has a history of her abdominal surgical wound breaking wide-the-frack open -- technical term: dehiscence -- and taking months, infected, pain-filled, pus-dripping agonizing months to heal. *shudders* Throughout the last two weeks, much much more than dying, dehiscence and cancer have been Maggie's major fears.
The good news is Maggie had Cancer. Because she was accidentally taken to the rich people's hospital in Austin -- the indigent people's hospital was on ER bypass when she called 911 -- she got the best surgical, anesthesiology & OR Team in Austin in what is without question the best hospital in Austin. And the #1 surgical etc. team (as I just said) decided her case was interesting enough to take it on themselves.
Came the day before her surgery when her surgeon asked her if she wanted a "surgical weave" to hold the abdominal organs in place afterward or not. The benefit would be it would allow him to do an appendectomy as well; the problem is, it would cost an extra twenty-thousand dollars. Maggie told me "I looked him dead in the face and said, 'Use the surgical weave and do the appendectomy. That's one less possible emergency abdominal surgery I'll never have to have. As for the $20 grand, it's fine. I'm dead broke and am never going to be able to pay for any of this anyway.'"
"The surgeon blinked for a moment, then started laughing, caught himself -- it was as if he admired my guts -- and said, 'Alright, we'll use the weave and do the appendectomy.' And walked out of the room."
The surgery happened. Along with all the stuff which saved her life, an utterly routine appendectomy took place. In addition, an utterly routine D&C took place, as Maggie's had long-lasting issues with cervical cysts rupturing. The question for 20 years has been, should she get a total hysterectomy to avoid the substantial risk of cervical cancer. One of the major questions considered in this surgery was, 'Should we do a full hysterectomy?' A GYN/Oncologist was brought in on the case precisely to answer that question. After doing a full work-up on Maggie, talking with the primary surgeon about the seriousness of the primary surgery -- it was a MAJOR threat to her life and time-of-surgery, e.g.: how long she was under anesthesia, as well as length-of-incision, e.g.: if a total hysterectomy had been done the surgical incision required would have been triple its current size, the dehiscence Maggie is worried about (which has not yet happened) would have been flat-out unavoidable, infection would have set in, rehab would have been measured in six months to a year... and that is if she had lived to get off the table, given the longer OR time and the additional insult to her already badly damaged system.
Maggie and I decided against it. Her surgeon, and her GYN/Oncologist recommended against it. What they did suggest instead was a full D&C during the surgery along with a biopsy, as well as an examination of the uterus and other reproductive organs, visually (if possible), by touch, and through biopsy.
What you need to understand is Maggie has had cervical cysts rupturing every few weeks/months for decades. The pain is a 9 out of 10 with 10 being screaming then dropping to the floor writhing banging your head trying to knock yourself out. Nine is just short of that, all you can do NOT to totally lose it.
I speak as someone who has gone all the way to 10 more than once. Dropping to the floor, first screaming, then sobbing in agony. Almost everyone around me getting away from me. One good friend came over and helped me to my car; I drove myself, somehow, to my doctor's office where I stumbled in (without an appointment; ha!) and they instantly took me back where I was seen within 90-120 seconds. Hours later I was in the hospital being admitted by a neurosurgeon for the next four days, emergency neurosurgery two-three times, morphine drip, unable to form words of more than two syllables or speak past a four-year old level...for four days due to the pain.
THAT is a 10 (in case you're ever asked how bad it hurts 1-10.) If you can talk about the pain while you're in the pain, it ain't no 10. *smiles*
Maggie's been living with a 9 for 2 to 3 days every few weeks to a month for the last 10-20 years. Plus the fear of cervical cancer. With no health insurance, she's had NO way to find out; she's simply had to ride out the pain with Advil, and ride out her fears alone.
The physical examination during surgery was unremarkable. Which is good. Of course, it's the biopsy that tells the story. Two days ago (Wednesday) the biopsy of Maggie's D&C came back. Nada. Nothing. Clean. Her GYN/Oncologist came by and explained... as Maggie told me, he said this means because Maggie is in menopause, she in no longer a cervical cancer risk. She made it through the danger zone and out the other side. Done, complete, fini.
The biopsy results also came back Wednesday from the appendectomy. Remember, the routine appendectomy that almost didn't get done and only happened because Maggie insisted they spend an extra $20,000.00? Cancer. Malignant cancer. The Oncologist came by... as Maggie told me, he said you got lucky. The margins on the cancer were clean. That means we got ALL of the cancer. It didn't spread anywhere. It was just growing there in your appendix. Because we took out your appendix, the cancer is all gone. You don't need any special treatment, any checkups, nothing. It's handled.
Maggie told me, "I pushed for being treated like a rich person. 'Twenty-thousand dollar weave & an appendectomy.' That's the price-tag on my life. Well, one of them."
Had Maggie NOT had this surgery, she would have died, three different ways that I am SURE of, and that's just so far. My guess is, by the time this all gets sorted out, between her doctors, nurses, rehab team and myself (as a retired paramedic) we'll come up with six to seven certain issues which would have killed Maggie for sure over the next five years, another five to ten which might have killed her over the next five years, plus another ten ranging from would have for sure to probably to would have/might have got around to killing her 5-25 years if the other shit didn't get her first. *smiles sweetly*
Shorter me: Rich people live longer than poor people. Maggie Jochild is a brutal demonstration. She would have been DEAD RIGHT NOW (within a week of when she called 911) in an ugly, ugly way... from gangrene/peritonitis of the bowel/abdomen. Followed by lots of other crap shortly thereafter, ranging from heart to appendix to cancer of the appendix to other abdominal organs being strangled to hernia's rupturing to the stomach literally exploding to intestines dying to kidneys dying.
Maggie was a dead woman who could barely even walk. Now she's going to a Nursing Rehab facility IF someone gives her CHARITY, if y'all can cover her personal expenses so she still has a home and a cat to come home to afterwards.
They treated Maggie like a Rich Person (she says; I say, like someone in the middle to upper class), someone like me or Sara or Evan or Jen, someone with INSURANCE.
If they'd treated Maggie like someone with no insurance she'd be dead right now. If she'd waited one more day (maybe), two more days (for sure) to dial 911, she'd be dead.
If she had insurance she'd have been seeing her doctor all along and ALL this crap would have been caught 8-10 months ago and NONE of this would have happened. Or to the extent that it did happen at all it would have been caught early on, the surgeries would have been done early, and Maggie's life would never have been at risk. As it was when they put her under last week, there was a VERY real chance she was not going to wake up. I placed the odds at 80% survival which means there was a 1 out of 5 chance of on-the-table mortality. If she'd not been in a Rich People's hospital -- simply because the poor people's hospital by the grace of the Gods was on ER diversion that night -- I'd have given her 60/40 maybe even 40/60 odds depending on who was operating and who was doing anesthesia. As it was, instead of a 60% chance (3 out of 5) of dying on the table, it was 4 out of 5 of her making it in the Rich Person's hospital, and she wouldn't have even had that risk, not anywhere close, perhaps 1-100, if she'd had health insurance all along and had been being treated properly from the jump.
But Maggie's dirt poor. So she's screwed. What she needs now, desperately, is money. Her food budget for an entire MONTH is $160. Seriously. Her entire MONTHLY budget, rent, medicine, cat foot, electric, phone, water, everything...comes to $1200 bucks per month -- and she doesn't always hit that. When she misses and me and her other close friends can't make it up, she goes hungry. Yes, you know someone who goes without food on a routine basis because she has no money. And yes, she almost just died because she didn't have the money to see a doctor.
About half of her monthly income comes from GNB/Meta Watershed donations, the rest from her work as a Medical Transcriptionist. Due to her many disabilities, working from home very part time is all she's been able to do for quite some time. (And yes, I am working on the design of a company in which Maggie would be able to be able to make a real living, have insurance... but starting a start-up is tough anytime; it's especially hard at the moment when I'm wiped out physically myself. *sighs*) For the next 4-10 weeks here, she won't have any income from her work. We need to raise roughly $2-3K (obviously more would be better) to fill in the gap; the extra goes for extra medicines she must have, plus additional medical supplies, and healthier foods during the healing process.
Any donations or monthly PayPal subscriptions anyone is willing to make to help us support Maggie Jochild, are most gratefully appreciated. (None of the donations go for administrative expenses with the exception of PayPal transfer fees and the like. All of us supporting Maggie are donating our time and efforts completely, our phone costs and so on. We're not recovering costs.) Like many of the completely poor Maggie has no one else whom to turn; we are her insurance, we are her support system.
Please help as much as you can. The hospital has saved her life. Now let us help her financially so that she still has an apartment to return to when she gets out of rehab, so that her cat has food to eat, so that her electricity is still on and the water still flows. The doctors and nurses have taken care of Maggie's internal organs. It is up to us to finance her voice.
Study links 45,000 U.S. deaths to lack of insurance
Not Being Insured Will Probably Kill You
1. A post from Maggie will go up by Saturday morning.
2. Here's a poem Maggie "wrote" days ago, working on passing gas:
Forgive me
For not eating the plums
That were in the refrigerator
They looked so cold
And delicious
But if I had
My stomach would have exploded.
Apologies to
William Carlos Williams
Go to Meta Watershed and SUBSCRIBE or DONATE for Maggie.
Do this now.
Please.
Cross-posted at Meta Watershed and Group News Blog.
Sunday, October 18, 2009
Maggie Jochild Sunday Weekend Update
Subscriptions & Donations Absolutely Still Needed
Maggie is doing really well, even better than yesterday.
I have a full report from both the morning, swing, and overnight shifts for Saturday/Sunday morning. Just took the Sunday morning report minutes ago at 5:10 am CT/3:10 am PT. (I'm on PT out here in Seattle.) As of right now, all of Maggie's vital's are fine. Her oxygen is 96% (compared to 92% a day ago.) Her BUN and Creat are also fine. She's peeing (which she wasn't a day ago, or only barely) at about 30ml's an hour v. input of 150ml's IV fluids.
Maggie was VERY dehydrated when she came in. Folks -- including myself -- were perhaps a touch slow in figuring that out, only getting clear about it yesterday in ICU Stepdown. Makes sense however, as her damn bowels were all caught up and strangulated off in the hernias. So no matter what she poured in, only some fraction of it was able to get through to her body, resulting in dehydration. As I said, she'd lost 87 pounds. That should have rung loud bells for all of us but didn't. We were all busy thinking about the surgery and her vitals were inside normal limits. Well, it caught up with us yesterday. NOT to say that her vitals are off; they are not. However she's taking in 150ml of IV fluids an hour and didn't start peeing till swing shift Saturday which is when they increased her to 150ml/hr from where they had her. Before then not only was her input less, but the lack of pee was perhaps justified due to anesthesia. Afterward everyone -- and by everyone I mean the internal medicine/ICU doctor -- woke up and figured out the dehydration, upped her fluid input, and "poof", till she started getting above 30ml/hr which is "acceptable" output. Which means her kidneys are working okay, which is always one of the first big steps after any surgery and for sure after major surgery such as this where the bowel and everything in the abdomen was involved.
Maggie is getting unlimited ice chips for comfort (as the inside of her mouth is still very dehydrated) and will be till she can start drinking. She won't be allowed to drink till the NG tube comes out, and that isn't going to happen till her bowel opens up which hasn't happened yet at all, not even passing any gas. This is normal after surgical shock. I remember after my recent colonoscopy where my colon was completely clean ('cause of all the cleansing stuff I had to drink prior to the procedure) my colon was quiet for at least 24 hours and perhaps as much as two to three days before starting to come back towards normal. And that was after something simple, just a fiber-optic scoping of the bowel, not something where the entire abdominal cavity was opened and the bowel was actual run through the surgeon's fingers and inspected, repaired as needed, and packed back in place with mesh to hold everything where he put it. *smiles* Point being, anyone's bowel would likely be quiet for a few days after such treatment and this is to be expected. I expect to start hearing some bowel action within the next 48 hours.
The abdominal drain is almost done now, very little still coming out and no signs of infection. Her lungs are absolutely clear. She's been sleeping both when I called in during swing shift and on the over-night, which is really super good. The more sleep the better.
The nurses are quite content with her progress and are not worried about anything.
Last on the medical report, Saturday day her GYN/Oncology doctor (whom Maggie used to work for many years ago) came in. He was in the surgery and said, after making crystal clear that it's the biopsy that matters and everything he's saying here ultimately doesn't matter worth a damn if the biopsy comes back with different results. That said however, he reports that during surgery Maggie's uterus and ovaries looked and felt absolutely unremarkable. And, again he emphasized, while that is all good and wonderful, we don't know anything till we have the biopsy results.
My point of view: I agree with him completely about the biopsy ruling everything. That said, in my experience with someone with Maggie's history of LACK of medical care, I suspect we'd have seen gross abnormalities if she had cancer. I guess it's possible she could be just getting cancer but I find it unlikely she could a) get cancer, b) get this abdominal problem and have it get so bad she has to have emergency surgery, and c) both at once while the cancer is not able to be detected visually or by touch in any way. I mean, I guess it could happen. Just don't think it's statistically at all likely. And of course, we'll wait for the biopsy results because as the doc says, the biopsy results truly are everything.
Thus ends the medical report. Shorter me: She's doing great. Really and truly great, and progressing very very well. How she is doing greatly exceeds my wildest expectations for her post-operative course to date. I keep adjusting my expectations upward and she keeps exceeding them. She's doing GREAT.
(Stories to follow. Good ones.)
Financially however she is not yet doing great. Let me be really blunt. She's going to be out of work at least a month, maybe six to eight weeks as she recovers. Yes, we've received some donations, even some very generous donations and both Maggie and I appreciate them more than I can say. However it's not going to be enough. Maggie is going to run out of money two weeks from now, three if she's very lucky. We need to raise thousands and thousands of dollars at least.
We're working to see about Federal aid, but even if we manage it -- which is NOT at all a sure thing -- it will take a while, and it isn't so much for financial aid as I understand it, but to get her a Medicaid card so she can have Health Insurance.
Bottom line: Maggie needs people to subscribe, to make monthly commitments of $200, $100, or $50. If you can't make a monthly commitment then please donate as much as you can afford even if it stretches you. It'll be good for your soul. *smiles* Really, it will be. Do unto others; helping the sick and poor; every spiritual discipline and religion says to take care of the sick, the poor, and has a version of the Golden Rule. And this is Maggie. She needs YOUR help. I don't care if it's $5, $50, or $500. I want everyone to donate something. It's for Maggie. Seriously.
Maggie's in the ICU Stepdown with at least five tubes in her. (She's been calling herself "Tube-Girl".) She will be out for at least 4-6 weeks. Like most working poor she has zero reserves. More accurately, WE are her reserves. PLEASE Subscribe to Maggie's Ongoing Well-Being (or at least Donate generously.)
Someone asked in comments if they could have Maggie's hospital info so they could send cash. Um, no, sorry. I spoke with Maggie about that specifically today -- she sends you her love and thanks you for your offer. To send Maggie cash please send a Check or Money Order made payable to Group News Blog, to Group News Blog, PO Box 809, Bellevue, WA 98009. In the MEMO field write: Maggie Jochild. Please do NOT make it out to Maggie. She has no way to get to the bank and, for now at least, we're not set up for items made payable directly to Maggie. Stuff for GNB we can transfer via PayPal to Maggie in moments and then transfer directly to her bank account. (The ideal method is PayPal donation direct to Maggie but whatever works for y'all.) At the moment we're assuming ALL donations to GNB are for Maggie (so even if someone forgets to fill in the memo field it'll still get transferred to her PayPal account.)
Okay, story time and some stuff Maggie asked me to pass on.
First, I've now read to Maggie every post and every comment (through Saturday am) posted at Meta, GNB, and DTWOF. Maggie asked me to tell you very specifically how much she appreciates your comments, she loves you all -- she's talking to you, yes you -- and that she IS hearing what you have to say. From me: she loves, loves, loves hearing from you. It is the highlight of her day. Even if you've already commented two or three times, don't hesitate to comment and to comment multiple times, to leave LONG comments telling how your day is going and what's happening. Talk as if you were sending her an email or writing to her. I will read them to her (depending on how she's doing.) I assure you that y'all are an enormous part of what is having her recover so fast. So comment, comment, comment away.
The night Maggie went into the hospital before she called me (moments before she called 911) she wasn't sure what to do. The pain'd been getting worse and worse for days but, well, she'd been through pain SO many times before and it'd always, eventually, gotten better. This pain however just kept getting worse. The question was, was it bad enough? She didn't know. So we're clear, we're talking pain so bad most people'd call it torture. Or'd be screaming. Or'd be unconscious already 'cause their body simply knocked them out. Maggie on the other hand, was debating if the pain was bad enough to go to the hospital.
THIS is what not having health insurance does to people. Both Maggie and I agree that if she'd had health insurance, if there was health insurance available for her, she'd have been seen and treated eight months ago and none of this would have happened. But I digress.
So there Maggie is last Wednesday night, in pain so brutal that she, a woman who routinely lives with pain so intense it sends her to bed for days, is now, finally, after days of unremitting and ever-increasing pain, is finally considering calling for help.
She does ask for help. She prays.
Maggie prayed and asked her Mamma -- Mary Jo Atkins Barnett (1927-1984) -- "Mamma, what should I do?"
"Instantly", Maggie told me, "instantly, the pain became intense, so intense there was no question at all, none."
"Mamma, you didn't need to shout."
Maggie picked up the phone, called me, called 911, left two weeks food and water for Dinah. Time for a hospital trip.
*smiles*
Two hours later I was talking with her in the hospital; she was telling me how polite and wonderful the paramedics were with her. Go Austin medics go! (I used to be a paramedic in Houston. Back in 1980. Scary damn place to medic.)
For those of you wondering, no, Maggie hasn't written any poetry that I know of since the operation, however contrary to all appearances, I don't always know. I heard her demanding a notebook -- which had gotten misplaced during the migration from her on-Ward bed pre-surgery to her ICU-Stepdown bed and where was her notebook?! Eventually someone brought her a couple of pieces of paper and promptly stuck her ice-chip glass full of slushy water and ice-chips six-inches up above her eyes on a tray over her. She found that completely unacceptable and was not a happy camper at all. All this yesterday in the hours immediately post-op when she was just getting settled in.
Maggie loves the nurses and they adore her. That said, it's worth one's life (or at least health) to tear one out on the nurses in a hospital. They literally hold your life in their hands. (Maggie has my permission to use me whenever she needs to dump an emotional upset.) Making friends with the nurses, telling them how wonderful they are, being genuinely blown-away by who they are... all these are obvious survival strategies (for someone who needs strategy.) For both Maggie and myself -- I say this for future Googlers -- it is plain and simply the truth. We (myself as a former medic) and at the moment, she as a patient, are simply blown away by whom Nurses are. They rock; they roll. They rule hospitals. Doctors breeze in and breeze out and yeah, they work their asses off in a different way. But it's nurses working double shifts while also raising three kids as single parents and supporting the Union and advocating for patient care and trying to get a special program off the ground for this, that, or the other thing. Nurses were two of the four instructors in my paramedic program and ran ALL the critical classes. They are amazing human beings and great people to have in your corner.
So I don't know if Maggie's writing at all. Don't think so. Don't think she has a notebook. She does love her nurses though.
There's this one nurse on the night shift, both Friday and Saturday night. (Night shift goes from 11pm - 7am.) The woman is in her late twenties, early thirties, part Cherokee and all East Texas with this beautiful lilting Texas twang in her voice. She keeps calling Maggie "Baby Doll" and "Baby Girl". Maggie LOVES it; cracks her UP. Every time I talk with either this nurse or Maggie now I'm dropping into my own southern accent from the seven years I lived in the South. Cracks me up also.
*laughs*
We be having a GOOD time.
That's it for now. We do need your subscriptions/donations to Maggie's financial well-being, really and truly we do.
That said, Maggie's good. Her health is on track. The nurses are great and cracking Maggie up. We be having a GOOD time.
*hugs* to all and please COMMENT, comment, comment for Maggie.
Thanks, y'all.
Cross-posted at Meta Watershed and Group News Blog.
Friday, October 16, 2009
Maggie's Doing Great
Just talked with the Recovery Room Nurse... Maggie's doing GREAT.
She came through surgery like a champ. She's already talking. I should be speaking with her in another few hours.
Everything went well. Got out the hernias; fixed everything that needed fixing.
Looks to me to be about a five hour surgery, which is really flying. *smiles* Good for the entire team. Well done. And Hot Damn.
I'm so happy. Can't seem to stop smiling. Now Maggie has a decent shot at getting adequately older. *smiles* What a wonderful, beautiful gift.
Cross-posted at Meta Watershed and Group News Blog.
Update Sat 10/17/09 1:00 am PT:
Just finished a 20-30 minute talk with both Maggie and her swing-shift nurse.
Maggie is doing really, really well. Her oxygen level is in the low 90s, her other vital signs are all good. She's not peeing very much yet but it's only about 12 hours after surgery yet so that's fine. The drainage from the the surgical drain looks good (no sign of infection at all) and there's precisely the right amount of drainage (not too much, not too little.) Her mood is good, she's fully present and oriented, for a woman in her early 50s twelve hours after major fracking (emergency) abdominal surgery, Maggie is in such good condition one might think she's a) 30 years younger, b) 200 pounds lighter, c) being watched over and protected by her (deceased) mother as well as other beings beyond our understanding (and in which many people do not believe), d) pick and choose any or all of the above plus more and similar possibilities, and/or e) the best surgical hospital, the best surgical team, best anesthesiology, OR nursing and OR team in Austin, has done some truly remarkable work.
However you want to attribute this. From the ER at University being on diversion so Maggie ended up here, to Maggie shifting her entire public identity by putting in her own NG tube, to the best surgical team deciding this would be an "interesting" case for them to take on, to the best anesthesiology team working with the best surgical team and then Maggie scaring the living hell out of them with her story of the anoxia she suffered in anesthesia in her last surgery, meaning that this time a BUNCH of the best anesthesiologists watched her like hawks all through surgery, all through the recovery room (where normally it's just Recovery Room nurses) and all the way into the ICU step-down unit till she was CLEARLY herself and fine. Plus the nurses hearing all over the place about the NG Tube to the point that it's this BFD (big fracking deal.)
Listen campers... I got on the phone today to talk with Maggie for the first time after her surgery, got her nurse in the ICU step-down, a lovely young woman. After I identified myself (there's a code involved which they verify against the chart; not just anyone can call up and crash the system) I asked for a report. She gave it to me and then, SHE told me about how Maggie put in her own NG tube Thursday. She told me that. Out of nowhere. Then she said, "When I grow up, I want to be like Maggie."
*grins*
That, my dears, is shifting one's public identity powerfully. No longer the poor fat broad, but the woman who is pure guts and courage to do whatever it takes while being wonderful to the people around her. That... that is Maggie. And these young women in their twenties and thirties are now so clear about who Maggie IS that the fat broad identity is invisible to them (except medically) that all they can see is a hero to live up to, someone who leaves people around them in better shape after every interaction. Which is the canonical definition of Nurse.
We talked till she got tired. We'll talk again in the morning.
A few hundred dollars came in today. We really need a few THOUSAND dollars (at least) in order to meet rent, electric, water, cat food, and other bills. PLEASE please please donate if you haven't yet done so. Subscribing (committing to a monthly $200, $100, or $50) is even better. That way Maggie is assured as she recovers of having her bills paid. This is going to be a slow, long recovery. Maggie's not great at asking for money, and while I have no problem with doing so, I'd like to just have enough coming in that it's done. Please subscribe to Maggie's well-being. If we can get Two Grand in monthly subscriptions we'd be in wonderful shape.
She wasn't quite in shape today for me to read her your various notes. I did make certain she knew how much people are writing to her and how much people love her. She got it COMPLETELY. She wants y'all to know she loves you right back. Really and truly she does. She was very moved and wanted to make certain I made sure you knew how much she loves you. So get it, dammit. *smiles* Tomorrow, depending on her condition, I'll take a shot at reading her specific comments and emails (we shall see) depending on how she's doing.
That's it for tonight. Keep your comments coming, as well as your donations. Even better, take out a Subscription on Maggie's Well-being. *grins* Give her the gift of six months or a year of recovery.
*hugs* to all. Goodnight.
Maggie Jochild to have Surgery Today
Donations Still Needed
Maggie's surgery is scheduled for 7:30 am Central Time today (Friday.) It will last quite some time. I will likely speak with her for a minute or so, about 5:30 am just before she's taken to pre-op. If not, we talked at length Thursday.
For those of you new to the story, here is when Maggie was admitted to the hospital.
I hold Maggie's medical power-of-attorney, and also am acting as her attorney-in-fact, with her dear friend Martha Legare handling the money (at my request) as while I can do money issues, Martha's much better at that than I am. I do receive daily reports on where we stand financially. So first, before I get into reporting to y'all, I encourage everyone who has not yet made a donation or made a monthly subscription to Maggie, to please, please, PLEASE click on either the Donate button or a Subscribe button. If you're reading this on GNB, they're at the bottom of the post. If you're reading this at Meta Watershed, they're in the top right-corner of the page.
Maggie was in great shape on the phone. She's very much at peace with the surgery, very content that this is what is needed in her life right now. I am THRILLED at the hospital, the anesthesiology team in particular, and think the surgeon is probably pretty damn good, perhaps almost close to being as good as he thinks he is. *laughs* Mostly I'm glad she's in this hospital and not University hospital, as these folks are treating her like a real person and not like poor trash. What a gift it was to have University on ER diversion a few nights ago. Of such things lives are saved, no kidding.
One piece of really good news is due to the bowel being strangulated by the hernia, Maggie's accidentally lost a BUNCH of weight (87 pounds I think was the number) without noticing and is at her lowest weight in years; the bowel simply didn't absorb nutrition properly so its been having much the same impact as if she'd had one of those weight-loss bowel shortening procedures. Hot damn. The lower weight will make the surgery MUCH easier in oh so many many ways, from less need for blood, to faster surgical times (and thus less time under anesthesia), to faster healing times as there was (literally) less stomach to cut through, to making it easier for the surgeons to see the surgical field. Plus the less one weighs in general, the better one's vital signs and other critical internal health values are, both during and post-operatively. Shorter me: this is a good, good "bad" thing. Which obviously needs to be corrected as part of the surgery. But the weight loss is good for our team.
A doctor Maggie really likes and who likes her, whom she used to work for will be in the OR with her, will do a biopsy to make sure there's no cancer (we're not expecting any, but the doc is going to check.) The anesthesia folks will be watching like crazy, especially in the recovery room and the ICU -- she put the fear of God into them; she said his eyes got HUGE when she explained what happened last time with the anoxia -- so hopefully that'll go fine. I expect her to stay in the ICU for several days. She and I talked about what that is like, so she should be as prepared as one can be for that environment. *shudders* I don't like ICUs; the lights are always on, noise, lights and bells and buzzers. It's impossible to rest, however they are important and they do save lives. After she's done there she'll go to surgical step-down unit for another three to four days (I'm guessing) and then back to the surgical ward for another few days before being discharged. Again, the timing of all this is a guess and depends on how she does and how that hospital does stuff.
Mid-afternoon Thursday the nurse tried to put a NG tube -- that's a naso-gastric tube for those of you whom have never had one; it goes through your nose and into your stomach. You take it by quite literally swallowing the tube into your stomach, after it's through your nose, liberally lubricated. NOT fun and assured to trigger every bit of your gag reflex. I know this personally as part of paramedic training is practice inserting these through the nose and into each other's stomach, then inserting a big bolus of normal saline with a syringe down the tube into your classmate's stomach, then drawing it back out again, then removing the tube. And of course, having this done to you. As your classmate tells you "swallow, swallow, swallow, swallow" and shoves a fucking tube the size of the Lincoln Tunnel through your nose and down your throat. -- down into Maggie's stomach. "Swallow, swallow, swallow." Problem is, Maggie doesn't have a swallow reflex precisely. The nurse tried till the one nostril was all bloody. Then, check this, Maggie smiled, took the NG tube all lubed up, and put it down her own other nostril and right into her stomach. The nurse, Maggie reports, her jaw fell to the floor. By now Maggie's reputation on the surgical ward has magically changed from the fat broad to the women who put in her own NG tube. She says all afternoon long people were sticking their head in just to get a look at her, with awe on their expression. She says EVERYONE on the nursing staff is now in her corner. *grins*
Furthermore, the NG tube drained over 2 liters of bile and other gross stuff from her stomach, leaving her feeling really herself for the first time in perhaps a week. What with the hernia having strangled her bowel, everything was blocked all the way back up to her stomach, so anything that went in was just churning around and growing rancid. No wonder she was in so much pain. But now with all that crap out of there, and with the narcotics really taking hold, she's back to her normal self.
I and Maggie are both optimistic in a clear-headed way. That said, this is major abdominal surgery. It will go how it goes. Maggie is clear about that as am I. I am not saying prepare yourself for the worst, because I don't think that will happen, but at least take a moment and know that all outcomes are possible here both during and after surgery. Then breathe and expect that all will go well. That is what I believe, while knowing it is surgery and anything can happen. Life goes how it goes and we are not in control of anything. *breathes*
I will likely speak to Maggie just before she goes in to surgery and then not again till she's either in Recovery or the ICU. (It's possible I may not speak to her for a day or so depending on how she is doing.)
I will put up a new post as soon as I have word, even if it's just a flash update I send from my telephone. Meta Watershed readers: I am not set up to do a telephone update for you; I need to be on a computer and tomorrow I'll be out and about late afternoon Pacific Time. GNB is likely to have the first word, possibly by up to several hours if the word comes when I'm at my own doctor's visit late in the day. If word comes earlier then there won't be any difference and both sites will post more or less at the same time.
This procedure is what needs to happen now and it's happening in the best possible hospital in Austin with a brilliant medical team. I am content, and so is Maggie.
Finally, thank you to everyone whom has donated so far. Please... Maggie is going to be out of work at least two weeks, perhaps more. We need donations or if you will, subscriptions. Please... give generously.
Thank you everyone,
Jesse
Wednesday, October 14, 2009
Maggie Jochild in Hospital for Major Abdominal Surgery
Donations Needed
Maggie called me two minutes after midnight this morning my time, 2:02 am in Austin, Texas. She was in more pain than I've ever heard her.
Said she'd not been able to eat, drink for two days and was calling 911.
By grace, University Hospital -- a great hospital for emergency care, it's true, however it's the Medical School hospital and thus where all indigents go -- was on diversion for emergencies. Maggie was sent elsewhere, to what I consider a fine, really first-rate hospital, one where someone without health insurance would not normally have a chance of getting inside (unless they were visiting.)
They're treating her wonderfully.
Maggie has a MASSIVE hernia which has managed to wrap itself around ALL her various abdominal organs. Not only does this cause lots (and lots and lots) of pain, but it has clamped off part of her bowel thus impeding digestion. And done other damage.
There is no choice but for a highly skilled surgeon to go in, remove the hernia, repair any damage to the bowel (and other organs), and move everything back into place (the hernia having pushed the organs all around, as well as having caused damage.) While they're in there, they plan on taking out the appendix to prevent being required to do so at some later date.
The date and time of the surgery has not yet been set. I think Friday morning would be a good day to operate but it's purely a guess. If they don't operate Friday, they may well wait till Monday rather than operate over the weekend. Or not. *shrugs* That isn't a shrug of who cares. It's a shrug of not being able to predict the surgical team.
This is a major, major procedure which will take a while and require serious planning by the surgical team. Lots of things could go wrong.
If things do go well Maggie will be in the hospital for probably a week or a bit more, post op. I don't know yet if she'll be able to go home after that or if she'll need to go to a step-down facility. You'll know shortly after I know.
What I do know right now is this... Maggie's income is split between donations from readers of Meta Watershed & Group News Blog, and her work as a Medical Transcriptionist. She's on short-term medical leave of absence from her job, that is, while she won't get paid at all, she'll have a job to come back to. But she's not earning anything and she has bills she MUST pay.
Any donations people can make, either one-off or recurring, would be greatly appreciated.
Commentators: If I don't answer your comments right away it isn't that I'm ignoring you; it's that there's only one of me and I have a day job plus taking care of Maggie, plus I'm not well myself and must conserve what energy I have for my own work, doctor's appointments, and taking care of my family (which includes taking care of Maggie.) I'll reply to y'all when I have time.
The single biggest need right now is for cash, money, dough, coin. Maggie will be out (again, I'm guessing) at least several weeks and maybe more, perhaps much more. She has rent to pay, electric bills, phone bills, all of the various bills which still must be paid even though she's in the hospital. Please donate generously.
Oh... her cat is doing fine, and has a generous supply of food and water.
I'll update you more by sometime Friday, or in any event if there's a major condition change or if she has surgery.
Thank you in advance for your donations to Maggie, and for your love, care and concern for her. The donation buttons, both for one-off and on-going subscriptions, are in the upper right-hand corner of the page. Please give generously.
Thank you. (Keep breathing y'all. Keep breathing.)
Jesse
Cross-posted at Meta Watershed and Group News Blog.
Friday, September 18, 2009
RIDING THE WAVES
I have two or three posts I want to write, and ditto chapters. But I'm up for the past hour, mostly to eat after a 24 hour unwilling fast, and my body is aleady saying I have to go back into absolute stillness.
This past week really sucked. And that's mostly what I want to say. Body-wise, it was no fun. (That's understatement, kids.)
The lingering headache, which did eventually go away, led into left ovarian pain and cramps, plus eye-weeping from allergies and an inflamed taste bud. Too minor to complain about, really, but nagging and irritating. I was juggling the body mechanics requirements of (a) crappy joints everywhere except my elbows, so far knock wood no elbow issues at all, plus (b) that left ovary which gave out a knife-like jab with most kinds of movements, plus (c) the cramps which came and went, plus (d) forgetting to take the weak-acting OTC and sometimes affordable med I can take for the arthritic shit, Alleve -- trying to change position in bed to reach the lamp so I could write a few things in my notebook, and YIKES, zonked my back but good. The thoracic area muscles plus, either then or soon afterward, my rib muscles on the right side.
The kind of pain that left me unable to find a comfortable position at all, and made me never want to take a full breath. Which is really a bad choice for someone with asthma, I pay diligent attention to full, steady breathing.
This was at about 1 a.m. Five hours later I had spiked a fever, emptied my bedside water jug, and was beginning to wonder if it was in fact a weird-ass heart attack. I fished my blood pressure cuff out of the box with my thermometer and other medical necessities, realising I hadn't checked my BP in over a month.
I do have mild hypertension, kicked in when I was 40. Everybody in my family, even extended family, had hypertension from a young age onward. The family ethic was to simply tough it out, which meant early death from strokes and heart attacks, or to diet obsessively while still smoking, drinking, and/or living in a simmering rage. Hostility is as much a risk factor as hypertension, more of one than being fat or having high cholesterol, but since the drug companies can't come up with an anti-hostility pill that folks will actually take, it's the diet industry which gets all the bucks for "preventing heart disease."
Thing is, in those mass studies that prove a correlation between being fat and having increased incidence of heart disease, if you factor out the folks who are chronically dieting (which most studies do not, but a few have) -- if you factor out the extremely abnormal behavior of self-imposed starvation, there's no cardiac difference between fat people and non-fat people who are not dieting.
I once typed medical records for a clinic of doctors who did medically-supervised weight loss. I typed the release forms patients were asked to sign which indicated it was highly likely if you lost weight by their methods, i.e., focused on calories but not kinds of calories, you would develop extremely abnormal cholesterol levels as a result. Also, 30-40% of their patients had to have a cholecystectomy (gall bladder removal) within six months of the diet beginning. They didn't mention the 95% failure rate of all diets, but my guess is, it still wouldn't have stopped people from spending their money on what sounds like medicine but is pure snake oil. (I mean, can you imagine any other recommended treatment with a 95% failure rate being allowed by law?)
Because the real problem folks have with fat is that it looks like fat. Not what it does to your health.
So, anyhow, when my high blood pressure showed up, I had a good feminist doctor who said "I assume if you're this fat already, you've dieted for years in the past" which is exactly right. We went over what I ate, which at that point was extremely healthy, and she couldn't find any suggestions to make. I did as much exercise as my asthma allowed. So she recommended lisinopril, an ACE-inhibitor, and warned me that hypertensive drugs vary widely, not all of their mechanisms of efficacy are completely understood, and I might have to go through a dozen before I found one that worked for me.
I began on the lowest possible dose, and it worked instantly, easily, no side effects, no spikes after exertion or during stress. Just nice steady pressures in the 110/70 range. Been on it ever since, at the same dose. Because there is no honor in dying young.
But a few months ago, I began noticing that, along with some other physiological changes, my daily or every-other-day blood pressure checks were registering some very low readings. Lisinopril is available as a generic for $10 covering three months, it's not a drug I've had to give up, EXCEPT it costs me $25 to have somebody go pick up a prescription. Even every three months, that $12 a month, which is a significant budgetary item. I mean, fresh broccoli or lisinopril? That's a real question in my life.
So I decided to try not taking it for a while, see what happened. For over a month, no change in my readings. And then I forgot to keep checking.
So, in that world of pain, I suddenly thought "Hey, lingering headache, sign of hypertension you dummy" and I took my pressure: 165/100. The highest, by far, I've ever had. I managed, with serious effort, to move enough to find the lisinopril bottle and took one without water. Then I began to worry about fluid imbalance, what with a fever and all, so with what I honestly consider a heroic effort, I got up to refill my jug. Also checked my e-mail, and I replied to Cowboy Diva's comment about my latest chapter, but it's not there now so I must have either hallucinated it or somehow hit the wrong button. I called Jesse to let somebody know what was up, and also to check in on him because he was also in a world of pain. Then went back to bed.
An hour later, my blood pressure was normal. I've checked it eight times since, and it's never above 120/70, so I'm back on the lisinopril, for sure. I finally found one strange position which eased all the various spasms, and I fell out of consciousness right away. Slept half an hour, which is when the need to shift joints kicks in and in the course of moving while asleep, of course my back and ribs screamed. But with half an hour to an hour of sleep at a time, it's gotten slowly better. Fever is gone, taste bud is normal again, and sitting up/walking is possible.
That's my story for now. Back to living on an island far away from the current of the rest of the world. Dinah is keeping me good company, because I have been free-handed with the treats. The night of her birthday, she even watched a few minutes of a PBS special about show cats with me.
And, by the way, Max Baucus, Dianne Feinstein, and all the Republicans who think the public option is anti-American: I hope you have to spend your old age living off inadequate Medicare and the kindness of strangers. Except you wouldn't recognize kindness if it was a Maine Coon show cat who bit you on your gluteally-challenged ass.
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