I am entering the hospital again this morning. After back-to-back pneumonias over the past few months, with three different rounds of antibiotics, my chest x-ray is now clear but my oxygenation has deteriorated to the point that I have to stay on the BiPAP mask 24 hours a day. The visiting doc says he is out of options and wants tests run that can only be done in the hospital. Transport there will be brutal, as usual. I am an indigent patient in a Republican-controlled state. Hold me in the light. I will update as possible.
Showing posts with label disability. Show all posts
Showing posts with label disability. Show all posts
Tuesday, May 5, 2015
Friday, October 3, 2014
A CRIP'S ANTHEM
Eyedrops and eardrops and squirts up each nostril
Two-puff inhalers and count out today's pills
Bloody one finger for sugar machine
These are a part of my morning routine
Click out the insulin and stick in my tummy
Plan for a brekkers high-protein and yummy
Drain off the Foley and ingest caffeine
These are a part of my morning routine
Then comes clean-up, lots of rolling,
Scoutie watches, licks my toe
I finally am ready to face a new day
Your public awaits, Child of Jo
copyright 2014 Maggie Jochild
Saturday, March 22, 2014
DOES IT HURT WHEN I PRESS HERE?
(Dinah napping by the AC vent)
This
morning I woke up without deep pain, for the first time in over a week. On day 3 of Flagyll as well. The Miralax, however, has not yet unplugged
me. Still, I am more alert and ready to
consider life again, post massive UTI.
The
doctor came for a check-up yesterday. He
brought his usual tech and a trainee who was pushed forward to do the blood
draw – from the looks of it, I may have been his first ever. I simply squeezed my eyes shut and thought
about Skene until the fumbling ventilations were over.
The doc had not yet read my sleep study
results and could not find them in the record, so seemed to want to rely in MY
impressions rather than off his own interpretation; this does not inspire
confidence. (I miss you so much, Mobile
Docs!) However, he silently wrote me
scrips for prophylactic antibiotics against the next Foley change, plus one for
Vicodin for emergencies, and mumbled something about continuing the
oxygen/Bi-Pap. He also palpated my
inflamed kidney with a resultant shriek and what they refer to as “guarding” on
my part.
Fascinatingly, Dinah (who hasn’t
come near me willingly in over a week) tottered up to sit protectively on the
foot of the bed between me and the doc. I
was very moved by her old kitteh aegis.
Tuesday, March 4, 2014
IN-SPIRATION
My doctor’s office sent me the basic results of the nocturnal sleep study I underwent on 17 February. Over a period of five hours, off oxygen and BiPAP, my highest SPO2 was 96% and the lowest was 81%. Anything below 90% requires oxygen, and according to my RN, anything below 92% starts to affect brain function. I had 69 desaturation events of less than 3 minutes in duration and 14 desats of more than 3 minutes in duration. My interpretation of these results, verified today by nurse Jessica, is that I continue to require both oxygen and BiPAP. However, this shows vast improvement over where I was six months ago.
As if to emphasize my dependency, my BiPAP machine has registered a high leak at the gasket where the tubing emerges. I put in a service call to the horrible DME provider, Apria, who are dragging their heels about sending out someone to look at it but promised “a call” within a couple of days. In the meantime I’ll limp along with the leak. I suspect the device was injured by the ham hands of my weekend attendant, who batters all inanimate objects in her path.
I dreamed last night that I was living again with Mama and Bill. Bill and I were both teenagers, and Mama had been left without income by my father. She needed to go to an outpatient hospital for extensive tests in a neighboring town, and after work I picked up her, Bill, and a new orange-and-white kitten I had just acquired. On the drive there, Mama was irritable with worry. She said she needed money to pop into a grocery along the way, and I gave her all my cash. She returned with a single bag and no change. We were checked into a family suite at the hospital which was little more than a set of bunkbeds off a corridor with access to a kitchenette. I unpacked the groceries, to discover it consisted only of breakfast cereal, a quart of milk, and coffee plus cigarettes for Mama. Exasperated but trying to conceal it, I whispered to Bill I’d need to go back out and use the small amount in my bank account to get us something cheap for dinner plus some canned food and litter for the kitten. I was very worried about the kitten escaping from our not-quite-secure residential annex, and didn’t trust either Mama or Bill to keep an eye on the little one. That’s when I woke up.
Not a dream of complex symbolism; instead, it’s all too reminiscent of events that actually took place in my past.
I had another dream from which I was awakened by Scout hurling herself down on my chest and against my mask to sleep. At the time of awakening, I thought the dream had been hilarious and very clever, and I went over in my mind to memorize it before I returned to sleep. This morning, however, it has vanished except for the impression that I found it so entertaining.
Tammi made blackberry pancakes for breakfast the rest of the week. Something nourishing to wake up for each day.
Thursday, February 27, 2014
SINGING FOR MY SCRAPS
Tammi is out now getting copies, etc, preparing the last of my 20 page financial review portion of the Star Plus application. Exact same form I filled out earlier this month for food stamps, but when I called to see if one HHS department could share their info with the other department, I got a merry laugh and then a quote about the penalities of providing incorrect information. Your Republican "cost-cutting" process at work, all you fuckers who have voted for Dubya and Perry.
In other news, the cats are sequestered from each other all but five hours a day. I spend nights with Scout, afternoons with Dinah, and am always missing one of them, it feels like. But it is keeping Dinah eating. I need a cat whispered to come in and rewire Scoutie's brain.
Tuesday, February 11, 2014
SLEEP INTERRUPTERS
What I fear:
4. Bedbugs.
3. Power outages.
2. Institutionalization.
1. Another Republican President.
Saturday, February 8, 2014
ALWAYS TRY FOR THE UNEXPURGATED VERSION
Happy birthday to Ginny Bates! She and Myra are consumed with renovating the
new house behind them that they have bought in order to turn over the family
home to Gillam and Jane before the first baby is born. Myra sent me the photo below of her birthday
gift to Ginny, a Fire-King tilted pitcher in jadeite green.
I woke up during the night with
Foley pain. Finally took a tramadol, my
first in over a week, and waited for Belinda to get here. She flushed the tube and I got a help with
position change, and the throb has stopped.
But Dinah is Not Eating. Waiting to see what is revealed on her noon
visit to the vet.
I had my food stamps call yesterday
afternoon with, as a bonus, Margot listening on Skype. I was pretty worried about it; social worker
Nanci Felice had told me the cuts in Texas are getting worse and worse. After going over all the details, I was kept
at the same level, $87 per month. Which
is ludicrous. At one point, the HHS
woman said “I don’t really see how you are making it.” If it weren’t for Margot and other donors, I
would not be making it at even a poverty level, and that’s a fact.
I have been watching the Olympics
ONLY on BBC and it makes a phenomenal difference to have it through their
lens: Vastly more intelligent (and less
intrusive) commentary not centered on mythic American exceptionalism, no use of
the word “inspirational”, great humour and background, no commercials, and best
of all, NO CHANCE OF HAVING TO HEAR MICHAEL PHELPS’ NAME GRATUITOUSLY TOSSED
IN. The hard-on American men have for Phelps is baffling to me. I am actually
learning substantive things about other cultures and I can fast-forward or
replay when necessary.
In
addition, the commentators who are not Clare Balding are, despite not being
brilliant soft butches, still have a vocabulary and gift for vernacular that
reminds of the era of colour commentary that existed in American media before
worn-out-before-their-time former athletes (dumber than rocks, most of them)
automatically became “retired” into commentator positions here. The descriptions and background info provided
are generally riveting, often delivered in rich working-class and/or regional
accents sans nationalistic crap, and often rolling out words like penultimate,
for example.
This
morning Pam Spaulding informed us that a grievous political edit was made by
NBC during the opening ceremonies broadcast in the US. The following section of IOC Chairman Thomas
Koch’s speech, the part emphasizing diversity and equal rights, was deleted in
America:
"Now
you are living in an Olympic Region. I am sure you will enjoy the benefits for
many, many years to come. Thousands of volunteers have welcomed us with the
well-known warm Russian hospitality. Many thanks to all the wonderful
volunteers. Bolshoi spasiba, valantyoram! Thank you very much to everyone.
Russia and the Russians have set the stage for you, the best winter athletes on
our planet. From this moment on you are not only the best athletes, you are
Olympic Athletes. You will inspire us with your outstanding sports
performances. You have come here for sports. You have come here with your
Olympic dream. The International Olympic Committee wants your Olympic Dream to
come true. This is why we are investing almost all of our revenues in the
development of sports. The universal Olympic rules apply to each and every
athlete- no matter where you come from or what your background is. You are
living together in the Olympic Village. You will celebrate victory with dignity
and accept defeat with dignity. You are bringing the Olympic Values to life. In
this way, the Olympic Games, wherever they take place, set an example for a
peaceful society. Olympic Sport unites people. This is the Olympic Message the
athletes spread to the host country and to the whole world. Yes, it is possible
to strive even for the greatest victory with respect for the dignity of your
competitors. Yes, Yes, it is possible - even as competitors - to live together
under one roof in harmony, with tolerance and without any form of
discrimination for whatever reason. Yes, it is possible - even as competitors -
to listen, to understand and to give an example for a peaceful society."
Wednesday, January 29, 2014
REINTERPRETATION
This morning we made an
almost-no-sweetener-added blueberry and cream cheese pie, chilling for later,
in addition to a salad and fish for lunch.
Also had bath, shampoo, and linen change. Met with Elizabeth, the attendant agency
supervisor, about adding on 1.5 hours of Tammicare per week as authorized by
DADS, and with her came a volunteer coordinator who is going to find someone
that will help me sort through boxes and papers, clear out this place. Have done my budget for next month (squeaking
by kindasorta), and can now focus elsewhere for the afternoon.
Last night I discovered among new
records being made available online is the death certificate of Author Atkins,
the man who raised my mother and was her beloved Daddy. I was startled to discover that although,
yes, he died of pulmonary failure, it was not from CHF as I had thought but
instead was lung metastases from GI carcinoma.
She often told me about sitting up with him at night, when he could not
sleep from gasping and coughing, as he took months to die during her 16th
year. It must have been a worse death
than I had imagined. Marked her for life
and perhaps accounts for some of her fatalism toward health issues.
Even more shocking, I discovered
they (Author, Sook, Mama, and her adoptive brothers) lived not in Stoneburg but
in Fort Worth during 1931-32. When I ran
across this city directory, it sparked a vague memory of Mama talking about the
Christmas when she was 5 years old and they were in Fort Worth, but I had filed
this away as a visit. Instead, Author
found work as a flagman for the Rock Island Railroad and they lived in a small
frame house (2 bedrooms and a detached bathroom) a couple of blocks from the
rail line. On further searching, I found
the house is still standing, built in 1915, and I snagged a photo of it.
I ache to show it to her and ask
what memories it evokes.
Wednesday, November 27, 2013
METABOLISM
I have an A-list of sites that give me pleasure and/or substance to read. They are perused in this order: XKCD; ANIMALS TALKING ALL IN CAPS; BagNewsNotes; Hullaballoo; Brilliant At Breakfast; WTF Evolution; Clients From Hell; and final treat, NN. I get to raptly read Nancy's musings and links while enjoying breakfast, and digest it while reading the always interesting comments. By that time, I feel prepared to face the day, whether it's PT, nursing visits, begging for social services, or actually finding the energy to write.
I try to live in daily gratitude. It's a necessary counterweight against the fury of poverty. I am deeply grateful for all those in my generation who have refused to succumb to cynicism, isolation, and shame, and who still find a life's meaning in Making Things Better For All Of Us, however we can manage it. I am grateful each month for making rent on time, having a phone line and electricity (I have often gone without those three), for enough to eat and it not being entirely processed crap, for the unpredictability of cats and the unbelievable competence of some social workers & caregivers.
I am lucky beyond words for those who love me, who love me over time and across barriers, who accept my not-so-buried damage and make me laugh. I know to the average stranger, I look like a Lifetime movie gone horribly wrong, with the worst of endings, but most days, I am in fact happy. Pain and want can, for long minutes, be ignored. In my life, imagination has metabolized as endurance.
Thursday, November 21, 2013
I ENJOY BEING A GIRL, PART INFINITE
(Needle and thread under a microscope)
Night before last, Scout was acting terrified and hiding constantly. We eventually narrowed the cause down to the work being done on the roof, which was very loud and involved power tools. She apparently thought monsters were burrowing down at us from above.
She did not emerge from seclusion until 8 pm, long after all the ruckus stopped. She scrambled urgently onto my bed then and threw herself at me. I held her close and reassured her lavishly, and we fell asleep together.
But I woke up about an hour later with sharp pain my my Foley area. This happens sometimes when I sleep and get into a weird position. I did all my usual tricks to adjust myself, and not only did nothing work, the pain got worse. Finally, at 10 pm, facing a night of it, I tried pain medication.
Even that did not cut through the deep ache. I spent the night hurting bad, sleepless, distracting myself with games, movies, and holding Scoutie. Waiting for Tammi's arrival at 8 am.
Which brought instant relief when Tammi discovered my Foley bag lying flat on the floor instead of hanging by the bed, and the tubing stretched taut, pulling as hard as it could against the inflated bulb in my urethra. Returning the bag to its regular place stopped the pain right away. I still had residual tenderness, however, not to mention physical exhaustion.
And in two hours, MaiTe was due to arrive to do my monthly Foley change.
It is with miraculous relief I can report that MaiTe, an RN of consummate skill, was able to change my Foley with the least pain I have ever experienced. Tammi, her helper, gave a soft "Whoa" when seconds after beginning the "hard part", MaiTe declared "All done!" We are talking about experience here, folks. I have had no hoohoo pain since, and had a fabulous long sleep last night.
And with the roof work done, Scout is also back to normal. Preparations for Margot's biannual visit continue, and I can think of little else.
Thursday, August 15, 2013
SHIFTING SHAPE AND NAMING NAMES
Scout woke me up around 3-ish by chewing on my face mask. I had to fully rouse to stop her, and when I opened my eyes I saw Margot on the skype screen getting dressed. Was able to turn on the mic and say hello before going back under, Scoutie my chest duvet. Again: Coincidence?
Had upsetting dreams later about playing board games with my brothers (Craig cheated, of course) and discovering a massive black widowish-looking spider in my bedroom which, upon capture under a cup, turned out to be a malignant alien shape shifter who simply lifted the cup with newly-grown tentacles and skittered off behind a bookcase. No Oak in that dream.
Tammi has spoiled Scout unconscionably by holding her in one arm while cooking breakfast and doing other kitchen tasks. Scout is avid and now takes it as her right. When Tammi doesn't pick her up, Scoutie has been leaping onto her back from the nearest counter, twice drawing blood. Tammi is now talking about borrowing a Snugli from her mother...
The AC went on the fritz again, this time needing freon. I had to cancel Monday's PT but we made up for it yesterday in a cool house, with Gil actually arriving on time and my various problem sites healed enough to push into new exercise territory. It was brutal. I was, as M says, knackered afterward, and am sore today. Working HARD.
I have also been surging ahead in fleshing out my family tree. Now have over 12,500 individuals identified. Last night I was greatly entertained by a line living near Memphis where one girl was named Verbel and a later nephew was named Rade Tubal. Can't make up stuff as good as this.
Tuesday, June 4, 2013
TREADING WATER
Just et a bean and sausage burrito followed by peach crisp. Jessica the nurse has been and gone. My pulse ox was 84% after having been off O2 for an hours, so am leaving it on again today. I am so exhausted I have trouble writing simple sentences.
The sleep study has been delayed another week, paperwork issues. I hope they don't ask for the copay up front. The MD I recently left behind in favor of the new one has gotten months' worth of bills ready (funny how they had the staff to get right on that, but not to answer my health need calls, etc) so I am suddenly out an extra $150.
Some good news is that I found a temporary work-around for the "upgrade" the folks at I Can Haz Cheesburgr inflicted on their own site last week, which made made it impossible to see all the raw LOLCats flowing in. It was that stream I trawled looking for my weekly round-up. They made the change allegedly to interface between with FB, but as with all FB changes, it was bound to have a crap result on their actual users. I went to google to find other disgruntled consumers and discovered a so-far usable back-door. After I post this, I'll go assemble a LOLCat post for this week and get that up as well. Then to sleep without real rest again.
Friday, May 31, 2013
SO NEVER LEAVE ME LONELY
Gillian Anderson and Archie Punjabi in "The Fall"
Awakening from a dream in which I have a lover with two beefy / teefy / blondie teenage boys. We are driving down a dirt road to pick them up at the lake. The radio is playing:
Each time we meet, love
I find complete love
Without your sweet love
What would life be?
Tweaked the cannula a little last night. Slept 6 hours and only slight headache. Scoutie pressed against my legs.
Yesterday was no nap after only 2 hrs sleep: I could not surrender consciousness that night, took more courage than I could muster. And of course that became the day of endless intrusions, maintenance crew, deliveries, phone calls, new "How are WE today" nurse...Today at the least I have a carotid doppler at some point. Get the AC freon checked. Call the Gilead social worker.
I need my own personal pulse oximeter. Nurse said WalMart had 'em for $25, $15 less than elsewhere. Add it to the list. My sat when she got here, after I'd been off O2 for a few hours, was 90%. Went back up to 95 after I pulled into 2 liters for five minutes. Math I must manage now, in addition to carbizmas.
Dinah's weekly vet visit reveals she has gained back all the half-pound she lost last week -- Zillah remarked "That cat, she's tricky". Diplomatic way to put it. Scout has now developed feline acne on the right side of her chin and we commenced treatment with hydrogen peroxide today, under strenuous ginger protest.
Margot got a chance last night to watch Clare Balding's latest documentary about the suffragettes and agrees with me as to its excellence. I recommend it without reservation; don't know when it will reach the American airwaves. I also avidly watched and appreciated the Time Team special about the tsunami on England's northeast coast about 8000 years ago that permanently altered Brit geography and culture.
But the best thing on TV, hands down, is "The Fall": extraordinary writing, as good as "Broadchurch" and visiting the same general theme from a completely different perspective. The role allocated to Gillian Anderson's character is that of a woman who refuses to operate within "female" boundaries, and how she handles the resultant dehumanization with her assumed masculinity. Now that they have added in Archie Punjabi (KALINDA!!!) as her medical officer, my fascination is absolute. Apparently it is the highest viewed BBC show in years and they have already signed on a second series. I only wish American TV would give female actors such complicated, intelligent characters as in "The Fall" or "Scott & Bailey".
Wednesday, May 29, 2013
MUST GIVE US PAUSE
Spherical colonites of Nostoc commune, a bluegreen algae, photo by Gerd Guenther
I just finished another visit with my new MD, Doctor Matt. She is going to do another blood panel to recheck my thyroid, in particular, but her main impression is that I am at dire risk from sleep apnea of fairly recent onset. The oxygen tank will remain until I can get a sleep study with a firm diagnosis.
As usual, insurance and money is the hurdle. I can't get to a sleep lab without ambulance transpo, and Medicare won't cover a non-emergent ride. My home nursing agency appears to have figured out a way for me to have an in-home study, but are trying get around the 20% Medicare copay which may well amount to $1000. I will let you know how this goes. I think my life is going to hinge on treatment around this.
Just had a good cry with Tammi patting my arm and Scoutie standing on me anxiously. What I keep feeling at the moment, besides fear, is luck -- lucky to have this new doctor, lucky for the people around me who won't let me sink like a stone. And lucky to have a machine feeding me air. Air is a blessing.
Sunday, May 19, 2013
HAITCH TWO OH AND HYPERGONADISM, ETC
Skwirl con cajones gigantes
I still am not sure how to evaluate what the nightly oxygen is doing: Mostly good, certainly going to continue it. I wake up with daily headaches but they are lessening. My morning sugars have plummeted, is that related? I am frequently sweaty at night. I am sleeping longer but still desperately needing daily naps. So something else is still going on. At least Scoutie has now, finally, relaxed about the new Monsser at bedside.
In fact, Scout had a major breakthrough this week -- she can now leap up onto Dinah's eyrie. So keeping her from Dinah's wet food is a fucking issue again, and Dinah's weight gain (another tenth of a pound this week) may be in jeopardy. Further, in figuring out the route aloft Scout sent a massive stack of books and boxes crashing to the floor in the study. After that happened, Dinah refused to answer my calls or come within sight for 12 hours overnight, leaving me to imagine her lying dead or dying beneath a heavy pile. I once again lay awake for hours, sick with dread, wondering whether to wake up Win and Sheldon for an energency call. But at 9 am, Tammi arrived and said Dinah was in the other room, smirking as I begged out her name. It is a real piece of work to love that cat.
I spent some time last night reading what turned up for a Google search of "squirrel testicles". We had a new raider at the burd feeder, a squirrel with unbelievably engorged scrotal balloons in variegated colours. My research revealed this is their high breeding season and yes, they do swell and change hue when the hormones are in full use. But I could not find an image to compare with our guy, whom I have named Zucco Skwirl. Even the examples in the attached video are only half the gonadal size of our Zucco Skwirl. He joins our recognition list, along with Mama Skwirl, Finger Skwirl (one of the fingers on her right front paw is deformed into a permanent fuck-you finger), and the late Overreaction Skwirl, who died horrifically in front of Margot the first day of her visit here last month. No, you do NOT want to know what happened.
I decided to not hand on the note nurse Jessica wrote to the tweaker about my Foley mishandling. Earlier I'd asked the tweak to read aloud some cooking instructions on a bag of rice, and I realized while she is technicall literate, I could argue against full reading comprehension. And Jessica's note was emphatically angry. Instead, I set aside any impatience and kindly, creatively taught her how a Foley functions using some spare nasal cannula tubing and a poet's vocabulary. She got it, she really did, and her hands-on cleaning of me shifted. We both felt triumphant. I'll have to re-do it next weekend, she cannot retain, but such is attendant reality.
I also took this morning's shift to pass on what I know about cooking potatoes, rice, and aromatics. Wound up with some great dishes for lunch and dinner, imparted real food skills maybe she will use elsewhere, and feel grateful to have had enough extra energy to manage it. Oxygen? It's a GOOD thing.
Wednesday, May 15, 2013
BORG BY STEALTH
We are Borg. Moreso than ever.
Lots to report. I got several test results back yesterday. Most of the blood results were good or better. In particular, my non-fasting glucose was 113 and my hemoglobin A1c was 6, which the nurse said was dead-on normal and they could not be happier about. This means my blood glucose for the past three months has been under impeccable control.
My hematocrit was slightly off, which may simply reflect dehydration that day. My thyroid was also elevated, but that has some possible accompanying symptoms. So we'll be retesting both of those and following up. Easily treated if there's an issue.
No word back on my cardiac echo.
However, my overnight pulse oximetry showed dangerously low oygenation while I was sleeping. Dr. Matt immediately ordered oxygen and it arrived yesterday evening; I am to sleep with a nasal cannula on for 10 hours each night. She is also trying to figure out a way to get me a sleep study, given my lack of portability. At this point, I would welcome trying CPAP or BiPAP: Anything to get restful sleep.
Unfortunately, the O2 machine has completely fweaked owt our ginger kitten. Scout hid in Dinah's deepest cave for several hours, totally pissing off Dinah, and only emerged in the middle of the night to beg me for reassurance from the side of the bed opposite the hissing monster. She is intrigued by the cannula and would accept that as a new toy, but the machine itself has her utterly unnerved. It is off at the moment, and she is here beside me as I type. When we turn it back on at 7, well, send her your prayers or whatever.
Zach, my grocery shopper from MoW, gave sudden notice, and I met with a possible replacement for him, named James, over the weekend. James is a 30-something divorced dad of a 4-year-old for whom he wants to model giving back to the community and embracing diversity. He explained to me that he was born in Sweden and raised in Canada, and therefore his social consciousness is left of center. He shops organic himself and I feel good about this fit. Still, it will mean breaking in another new person. I am grateful to Zach for filling in when he could: People can be so generous.
Over the weekend I had two small episodes of urethral pain, both after the Tweaker had cleaned my Foley area. I passed this on to Jessica the nurse and she immediately checked my Foley. I heard her swear, something she simply does not do: Turns out the inflated bulb that keeps the Foley inside had lost 10 cc of pressure, enough to mean it could have slid out and was likely causing small damage to my urethra. She refilled it, with immediate relief, and wrote a furious note to the Tweaker with step-by-step instructions on how to clean around a Foley. The thing is, the Tweaker won't retain it. I'll have to go over every detail every time she's here.
I am sick of being in charge. I want to let it all go. This is hammering the spiritual path I need to follow. With Tammi, I can leave it all to her, or if Margot is around. Otherwise, I have to stay vigilant to keep my health intact, make sure I get real food and household items are not destroyed (Debra's trick when I ask her to do something she doesn't like doing -- currently she seems bent on wiping out the planting Margot made while she was here.)
Today Tammi called in absent but they replaced her with Patricia, an expert who stepped in and did bath/shampoo/linen change with rapid efficiency. I was able to zone out and appreciate the body comfort.
In other news, I watched the first episode of "The Fall" last night on Brit TV and it was absolutely stellar: What Scully could have been if she got Mulder out of her hair. Gillian Anderson at her Bleak House best, though of course chillingly modern. Check.It.Out.
Wednesday, December 19, 2012
BODY COMFORT, BODY LIMIT
Last night in the nether dregs I awakened and reached for Margot, but encountered only bedrail. I lay desolate for a few seconds, then whistled for Scout. No sound. I whistled again, and still no movement.
I said aloud into the dark, "Scoutie, I'm lonely, would you care to cuddle?" Within a minute she appeared on my belly, blinking in the cross-eyed way she does when she has just woke up. I held out my arms and she flopped herself onto my chest, wedging her head under my neck and starting a loud rumble. I thanked her and we dropped back off.
I tried resuming PT with Eddie today but half a set of the lower body exercises sent pain spikes into my urethra, so we backed off that and stuck to upper body work. The current Foley is not what we usually prefer, with a bulb that is a third the size Jessica recommends, so I may need to maintain status quo until around January 6th when I'm due for my next Foley change.
Friday, December 7, 2012
ANOTHER DECEMBER HOSPITAL STORY
I woke up at dawn with the sensation of urine leaking out around the Foley catheter in my urethra. It was only a small amount, so I relaxed as best I could, listened to Margot breathe, and watching light arrive outside. A few minutes later, a flood of hot liquid poured out of me.
Either my Foley has dislodged or it is blocked to the point where my bladder is finding another escape route. If it is the latter, I am at grave risk of bladder rupture.
I had to have my Foley replaced yet again yesterday, because the botched job done the day after Thanksgiving had come loose, with much blood and sediment appearing in my tube and bag. Jessica came to do it, swiftly and accurately, and I had Margot here to hold my hand. I rested afterward, relieved for good medical care and especially M's presence. My urine cleared and we had a sweet day.
Until around 8 p.m., when suddenly my urine went bright red with blood again. We opted for me to push water, keep track of the flow, and wait to call the nurse in the morning.
Didn't work. Likely my Foley has clogged from blood clots and sediment, but when I called Jessica an hour ago, she said she thought it was probably time to get an ultrasound done on my bladder. You can't fool around with bladder damage. And there is no mobile ultrasound here for bladders. I am looking at a trip to the ER, if her assessment is correct.
She has a call in to my doctor, and will be arriving herself in 20 minutes to see if by chance my Foley has simply worked loose again, a more benign scenario. I am now tight and breathing shallowly, making plans in my head, and since the clock that marked Marj's departure had already started, I am donning the emotional garments of possibly being in the hospital or here in recovery on my own.
Need to go arrange packing a bag, etc. Cannot eat or take insulin until I know if I am facing a possible procedure. My bladder feels tight, but I can't tell if that is real or just fear.
One of us will add a note later with an update.
-----------------------
10 a.m.
I am in the ER at Brackenridge Hospital (same place I was last December), with Margot beside me. Not in pain but I passed so much blood my nurse freaked and insisted I call EMS. Another ride on a too-narrow gurney with damned nice professionals looking after me. I am waiting to be assessed and offered a treatment. Will write more then. Hugs, y'all. And take care of our Marj, this is new for her.
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12:30 p.m.
Doctor arrived, list of possibilities range from infection to cancer; odds heavily on infection. Once UA is read, very likely I'll be given antibiotics and sent home. They have given both of us warmed blankets and much respect. We have eached dozed off.
Thank you for all the love; I feel it. More in a bit.
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7:00 p.m.
We are home, as of 6:30 pm. I spoke too soon earlier about things being resolved. While waiting for discharge, I apparently passed another clot that clogged my Foley and eventually sent fiery pain into my low back area. Two nurses flushed the Foley and that took care of it for that incident.
However, clearly, I continue to have clots in my urine. Current diagnosis is that it is the result of trauma and/or infection, and will clear with antibiotics, liquids and rest. The doctor did not want to proceed with anything more invasive until we try this approach. However, further clogs will mean I cannot pee and will need emergent flushing.
Best practice would be for me to be at home and get the flushes as need arises. To arrange this took a frustrating array of calls to various offices, and I still feel like I am facing a night or perhaps several nights of waiting hours for help. Jessica is on call this weekend, that's one good thing. I have already peed on myself a little since getting home, but the ambulance ride home was extremely hard on my body and may have shifted another clot.
I can't bear the idea of returning to the ER anytime soon.
Debra apparently did not show this evening, so we have no help here. Margot did not eat opr drink all day and is now ill herself. We need someone to pick up my antibiotics at the pharmacy before and get me started on it. I had one crappy half-frozen sandwich around 3, that's my calorie intake so far, but my sugar just now was 122 so stress has kept me conventiently elevated.
We'll sort it out. At least Scout and Dinah have us back.
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7 December, 10 a.m.
We survived the night all right, going to sleep early, exhausted. I felt tight and battered in my nether regions, and passed another massive couple of clots, with enough worry that I asked Jessica to return first thing this morning to check on me and flush out the tubes. I am still bleeding heavily from my bladder or urethra, and have not started antibiotics yet because Tammi is picking them up the hospital would not fill the scrip in time). I do feel hope that I can ride this out and get back to normal sans surgery or further ghastly trips to the ER.
Brackenridge is the county indigent and teaching hospital. Once it became clear my condition was not "serious" as they'd define it, we were ignored for long stretches. The bed was far too small and the transpo conditions were brutal. I feel covered in bruises and strains.
And Margot leaves tomorrow.
For whoever made the joke about honeymoon cystitis, it didn't land so well with me. Without venturing into TMI, the days of Foley troubles this trip have put the kibosh on much of what I would have enjoyed us doing, and I am bitter about it. I feel bad about myself. I am ashamed Margot is having to deal with this, and then ashamed that she has to witness my shame. She has been spectacular, and the only comfort I find is in (a) I offer this much intimate caring right back to her and (b) we clearly, deliberately chose what we have, the obstacles included, and we process our way through everything. Rather elegantly, as it turns out. The stories she can share from yesterday alone are hilarious if only between us.
It took hours for the ambulance ride back home to get arranged. Finally four burly men, a small record-keeping man, and a woman driver filled the tiny ER room to whisk me away. As we waited on the inevitable paperwork delay, the burly guys joshed with each other and I heard one of them say something like "Well, I do like poetry and that's my guy Langston."
I jumped in. "Langston Hughes?"
They all looked at me in surprise, except Poet Burly Guy who said "You know him?"
"What happened to a dream deferred?" I replied, and he lit up in pleasure, exclaiming to a friend "See, I told you that was a real line." So as I was hauled through the rabbit-warren of hospital corridors to the ambulance bay, we talked poetry and writing. You never know what you will encounter in people. and that's a very good part of life.
Monday, December 3, 2012
NOTHING BEETS THIS LIFE
(Today's luncheon beets before roasting)
Margot has adorably bound her hair into a bun using a red plastic sword as anchor. No wonder I love this woman.
I had PT this morning with Eddie and Margot an observor. Because the room is rearranged for cohabitation, I did not have the black shelves as my usual handhold, so I was forced to get sitting upright in a different manner. To my pleasure, I managed it. Despite waves of deep vertigo and pain, I sat up for 12 minutes while Eddie walked me through resistance challenges to my core. Scout was in avid attendance, and Margot's face was luminous.
When it was time for me to go back down, I did so as smoothly as an able-bodied person, with that kind of fluidity and control -- my legs did exactly what I asked of them. A first. We all burst forth spontaneously into a cheer when this happened. and Scout streaked away into the other room.
I have been pushing water and rebuilding stamina since; I was left my usual depleted and shaky self. But with M here calling me a hero. After Eddie left, I wept on her shoulder. This is as hard an effort as humans face, my beloveds. And incrementally slow progress. Yet it is progress.
Yesterday M massaged my shoulders and somehow eradicated the pain in both: A miracle, as far as I am concerned. The rotator cuff problem in the left has this morning resurfaced, but my right is still fluid and unhurting. She has also renovated my feet entirely.
Dinner last night was spectacular: Massive portobellos stuffed with shallots, garlic butter, provolone, ricotta, and panko; a Romaine salad with paper-thin slices of fresh radish, grape red and yellow tomatoes, toasted pecans, and peppery hot radish sprouts; and for me a roux to into which leftover roast beef had been shredded. Lunch today is imminent: roasted golden and pink-striped baby beets with roasted potatoes, shallots, carrots and garlic; mustard greens; and more of the leftover roux. Plus for M the last of the homemade whole-grain mac-n-cheese I made for the day of her arrival.
Scout is blissed out by getting to sleep with the both of us, moving from one to the other during the night. Dinah is also a frequent presence, allowing M the kind of mush and contact nobody else dares impose on her cranky self. For those who wondered, the "Dinah-charming" song is Dinah won't you blow followed by Someone's in the kitchen with Dinah -- she knows it is about her and melts as much as she ever does when I croon it to her.
Scout does not as yet have a song. Are there any songs out there with scout in the lyrics?
Friday, November 23, 2012
FOLEY MARY MOTHEROFGOD
I woke up from my nap this afternoon with a horrible sensation of wet sheets beneath me. I realized somehow my Foley catheter had failed, and urine was flowing into the bed instead of down the tube. I called the nursing service at 4:45 pm on Friday of the Thanksgiving weekend and of course got a call sorter, not a nurse. She promised to relay on my message.
When Debra arrived, she had a look and said she thought the Foley had somehow come out. She was wrong in that assessment. I waited an hour, unable to clean up or change the linen because urine was still flowing out periodically. I did stop drinking anything. Then Lettie arrived, who was my home nurse last year, competent and familiar, though not as adept as Jessica.
Lettie's investigation showed the Foley was still seated but had apparently become plugged by sediment, possibly from the recent UTI. She removed it and we began setting up for a procedure. I said to Debra "You need to shut Scout in the other room", because she was already eyeing the intoxicatingly rustling sterile packs the nurse was pulling out. Scout instantly vanished under my bed, indicating she has more vocabulary than we realized. Her own curiosity undid her, however, two minutes later when she sprang out to pounce on the new tube and Debra nabbed her.
The insertion hurt more than usual, and Lettie couldn't get flow right away to be sure it was in the right place. I drank down a bottle of water and within a few minutes urine began trickling into the tube. There was also a lot of blood at first, indicating Lettie had scraped me a little. She had trouble "finding the right hole", as she put it.
She inflated the bulb that locks everything down, washed her hands and zoomed off, leaving Debra to put everything away, then clean me up and redo the bed. I finally ate dinner an hour late but giddy with relief. I took a pain pill and answered Margot's skype, probably our last before she gets here six days from now. The family wedding she is attending in Florida will likely take up all her spare time before then. Famine before the feast.
As we were chatting, Scout came to cuddle and pose for pictures. Abruptly she wheeled and bit me hard enough on the nose to draw a stream of blood. Margot managed to grab a shot as Scout streaked away. Payback, I suppose, for denying her a box seat at the Foley Show.
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