Over the past 14 months I’ve gotten a look at every house I found that was:
1. Already built,
2. In my price range & size range (600-900 sq ft),
3. Judging from the ad, might qualify for a first-time homebuyer loan (which I could get, because sailboats don’t count as homes in this context. Considering how much work sailboats are to live on, I think that’s just precious.)
All 4 of them.
In 14 months of sporadic, but persistent, looking… only 4 houses turned up within my parameters.
Well, actually, only 3 were in my parameters. It just looked SO pathetic, I threw in the house I looked at that taught me just how horrific it could be to buy a repo. I don’t know why I felt a need to count that.
So, really, 3 houses. Only 3 even seemed possible, but they weren’t. They turned out to be marginally too fuddup for the loan, too moldy, or too close to too many Isy-toxic things.
Broke my heart.
In all this time, there were 2 houses I wanted to view that did, in fact, meet all 3 criteria, but they had a buyer and 5 alternates before I even had a chance to reach for the phone. Good, small homes go FAST here! (If anybody’s looking for steady returns on moderate investments, consider building some, eh? I’d be happy to project-manage that business. It’d be a great example of doing well while doing good.)
Double the target size and price point, and I’d have LOADS of options. The market is littered with 1200-2000 sq ft pocket palaces for a quarter to a third of a mil. Those buyers can be as fussy as they please around here.
The Reality Check
Here are some grim financial realities which bring new depth to the yawning chasm of the imp-possibility of me finding a safe home:
1. Frail, reactive body on SSDI.
NOTE: It’s illegal for anyone on SSDI (which normally brings in government-sponsored health care) to have over $2,000 in personal assests (exempting already-owned house and car), ever at all, even for 1 day, or they can stop your health coverage.
You read that right, folks. In the USA, poor and sick/disabled people are brutally barred from saving up, even in the interests of getting a car or home if they don’t already own one. (That was a GOP mandate. How’s that for fiscally responsible? /headdesk/)
2. Only legally-recognized close relatives are allowed to contribute to a mortgage. No matter how well connected the PDSP (Poor Disabled Sick Person; or, if you’re from California, Person who’s Disabled, Sick, and Poor), or how wide and generous their circle of friends, *nobody else* is allowed to contribute, or else the PDSP *gets no loan.*
NOTE: this was nominally an anti-terrorist maneuver, to keep cells from easily acquiring property. Which makes even less sense than most modern American anti-terrorist legislation… ‘cuz somehow the financial data-mining that’s actually been built into your central processing chip since the turn of the millenium, and is now supplemented by every data stream you dip into, is magically unable to track the source of these gifts, in this one realm of financial transactions? Huh?? And somehow it assumes that terrorists can’t find other ways to meet their logistical needs — a counter-factual assumption, at best. I grew up with actual terrorist threats framing our daily lives; this mickey-mouse magical thinking irritates me at the best of times.)
3. First time homebuyers (c.f. the snarkery in the opening paragraphs) get automatically lined up for a loan called FHA, which banks appreciate because the loan is insured by the feds. All houses bought with that kind of loan have to meet certain standards before purchase.
NOTE: this is generally good, as it ensures that first-time homebuyers start out in a code-compliant home. For me, it’s disastrous, because the standards don’t account for occult mold or proximity to fossil fuel output and EM radiation — but they heavily favor fresh paint and conventional insulation, cheap and reasonable ways to meet the code criteria. These amount to life-or-death issues for me.
4. Ordinarily, it’s extremely difficult — in fact, well-nigh impossible — to get a “one mortgage” or build loan, which you can use to buy a lot and have your own home built on it. Too many people have taken the money and run, or gotten overwhelmed by loads of decisions and delays they’re not used to, or lost their way somehow. This leaves unfinished properties dissolving where they stand, and frustrated loan officers doing much the same thing.
Now, when those loans ARE made, payouts are structured to keep the owner one large payout behind. The idea is to make sure the owner has “enough skin in the game”, a metaphor I always hear in this connection, which is peculiarly apt and especially painful for someone with CRPS.
Also, you need a builder on board who is prepared to advocate with the bank. How many builders really want to face a freaking bank just to get a picayune, weird little job like mine?
Also, my builder would have to be someone comfortable enough with low-tox building to help me be rightly understood when I talk about using high-grade materials in what’s otherwise a cheapest-possible design.
The Current Scenario
So, here’s what I bring to the table:
1. Frail, reactive body needing a small home with nonstandard finishes. Have some resources and loads of information.
2. Some relatives are able and willing to contribute, thank heavens and them!
3. Friendly mortgage broker, glad to work with me and guide me in inserting my info into their system in the most fruitful possible way. (Applied Mortgage in Northampton, MA. I recommend them very highly!)
4. Doctors willing to provide letters on letterhead stating that I do, in fact, have demonstrated needs that affect my safest home environment, and it would be good to work with me on that. (If only their fax machines worked.)
5. Info and analysis by the bucketload, which only needs to be extracted from my brain and the web and dumped out into tables, spreadsheets, breakdowns, overviews, digests, summaries, etc., about just what’s needed and just why it matters and what it really does to me when it doesn’t happen right. With references and bibiliographies for key concepts and key resources. In colors and patterns that are meaningfully coded to the info. In as many copies as they like. In origami folds, if that would help. Tied up in a neat little ribbon — green, as a hint. Sound good?
Of course, given 3 functional hours each day, putting that together is so much easier than it sounds… NOT. If I don’t go out and run errands or appointments, or eat anything the least bit wrong, get only a short walk in as exercise, my voice recognition software has no trouble with my allergy-hoarse voice, and I take 20 minute breaks every 30 minutes absolutely faithfully, I can try to eke that out to as much as 5 productive hours per day!
Who knows, it might happen!
Because, folks, poor though I am, tiny and unprofitable though my mortgage would be, simple as my other needs are.. there is NOBODY ALIVE who could have more skin in this game than me. And I need the chance to prove that to the bank.
More and more lately, I miss my Dad. I don’t know what he would have done or what he would have taught me in the process, but if he were alive, I would be safely housed. “Legitimate need? Doing your best? Got a rational budget? Okay, let’s figure this out.”
He was very staunch about facing hard realities and, working capitalist though he was, had many thoughtful conversations with his daughter about “from each according to his ability, to each according to his need.”
According to him, he loved that idea.
It was his favorite dictum about distributing resources, and he dearly wished it were realistic on larger economic scales. He worked in a world where it wasn’t useful, but he clearly wanted me to know that he honored it as an ethical guide.
He articulated to me how he used it as a parenting tool with his three gifted, demanding, and wildly different children. He said he’d never parent me the way he parented Older Brother, and Younger Brother was yet another proposition; he tried daily to treat each of us according to what he understood of what we each had, and what we each needed. He knew his perceptions weren’t perfect, and so it was a constant process to keep trying to improve his insight, as he kept trying to keep up with our development.
He explained all that nuance, admitted all that depth of thought and his practical limits, to his 11-to-13-year-old girl… in the late 1970’s. In some ways, he was way ahead of his time.
Through all the stormy years we had afterwards, I never forgot that, at root, he had that much faith in my mind and that much trust in my morals.
He’d be so proud of my diligence in all this.
Now, all I need is a reputable builder who’s up for this job, and enough working-brain-time to put all this medical and practical material together — preferably in the next week, due to the timing of the hard credit-check.
Neither is really in reach, but I’m here to keep trying. Wish me success!
If I can get this done this summer, and recuperate in a safe home for awhile, then I’d like to put together a plan to make small safe homes all over these hills; I know people who can find the funding, and I know customers who’d be banging our doors down. It’s just that I can’t properly or legally use that program for my own benefit, so I must have my own home first.
Tell you what, I bet the whole process could be neatly documented and charmingly presented in an attractive book on the subject. It’d be one blueprint for a win-win way to help stabilize local neighborhoods, reduce blight, mitigate housing crises, generate middle-class jobs, stabilize local economies, reduce medical costs, and make many people more calm and content. All of which is economically positive in so many ways… and morally spotless.
As I’ve said before, much of brain-retraining has to do with speaking to the primitive parts of the brain in ways it can’t ignore.
Being overwhelmed is very common these days. So, this tool is helpful for far more than just my fellow painiacs. I originally laid this out for someone else dealing with very different issues, and realized as I did so that it was a darn good tool and I’d have to remember it for myself. It has already been a help to me, so I hope it helps others as well.
The State of Overwhelm
I can tell when I’m in the state of Overwhelm because life is just a big old mess of decisions and problems and unresolved issues which are so toweringly massive they stop making sense. My usual ability to sort and prioritize and manage information freezes up, and my brain skids off into the ditch.
Once I’m in Overwhelm, it’s unreasonable to try to reason my way out of it in my usual way. Each thought is blocked by half a dozen issues backed up against it.
I’ve got to simplify. Not just that, but I need to SUPER-simplify — break it down into binary questions — that is, questions with only one of two possible answers. It’s the only way I can start managing the pile.
(What follows is a technique used in several disciplines. I’m avoiding jargon and simply using the words I use in conversation.)
The roadmap out of Overwhelm
When I was rebuilding my credit, the first thing to do was to figure out what I really owed, and what someone else was supposed to pay. This is a good template for dealing with Overwhelm.
First, whose job is it, really?
When I get overwhelmed, it’s hard to tell what’s my responsibility and what’s really someone else’s. It feels like this:
All the jobs are kind of muddled around in the space and there are too many jobs and not enough space.
When I draw a mental barrier between the two, things suddenly start to clear up:
Notice that, at this point, I don’t need to know who the “someone else” is; the first step is to be clear about whether it’s my job or not.
Managing my care?
Ordering tests and prescribing meds?
Testing those meds on my system, tracking their benefits and drawbacks, and updating the prescriber?
Keeping the dishes clean?
Keeping the outside steps de-iced?
(It’s my one outdoor job, and my partner does everything that I can’t and a lot that I shouldn’t, so I bundle up and take care of the steps without a whimper.)
Second, is it something volunteers can do or is it a professional job?
This is an important distinction.
When in doubt, upgrade.
Take care not to abuse the skills of your volunteers. You may know lawyers, counselors, accountants, and so forth, but that doesn’t make it right to ask for free professional services from them, except under unusual circumstances.
If those who help me out aren’t being paid (either by an agency/employer or by me), then they’re a volunteer, regardless of the skills they have.
I tread as lightly as I can on my volunteers. It’s an important long-term goal not to alienate them, but to keep them comfortable with me and happy to stick around.
The corollary is, I have high standards for my professionals, and hold them to those standards with all the clarity-with-courtesy I can manage. I have no hesitation about firing someone who consistently fails to measure up.
I put a lot of legwork into choosing my doctors. Here’s an overview of the process and links I used a few years ago: How I find my doctors
It’s certainly worth the time and effort to find good people who can do justice to your life and your needs. The question is whether you can find the slack. I hope so.
Fix the heater?
Put us up for a night until it’s fixed?
Give hugs, tea, and sympathy when I’m recently bereaved?
Train me in how to get my brain to reprocess deep pain (and the staggering scope of loss associated with it) without short-circuiting?
This is definitely not for volunteers; too much knowledge about neuropsych and too much investment of time is required.
Professional level brain & mind care
For some things, talking to a friend, doing something strenuous, or meditating a lot, is enough to allow a person to heal heart and mind. Life itself is generally a good therapist.
Some things are too complex, too deep, or too dangerous for amateurs. Despite our longstanding social taboos, people with recurring trauma (like central pain or abusive relationships) or PTSD (like survivors of war or child abuse or those who’ve been through worker’s compensation or disability applications on top of a devastating condition) are right and smart to get highly-qualified care for resolving the damage that these things do to our minds and our brains. The damage is not imaginary, and sheer force of will is not a great tool for healing it.
It CAN be healed, even the worst of it. It does NOT require chewing over the past; in fact, that’s often avoided in modern trauma counseling, because that can do to the PTSD brain roughly what our recurring pain does to CRPS brains.
Some techniques DO re-map and re-train the brain to make room for more stability, more healthiness, and move even a CRPS’d brain closer to a normal state.
Less pain! More joy! Less instability! More abilities 🙂
Some keywords for finding relevant mental health professionals: trauma-informed, PTSD, pain psychology. These are jargon terms that usually indicate the professional understands how these profound experiences affect our brains, and how that can be rewound or reworked to a better state.
Another thing you can do
It helps to vote for legislators who see the value in health care, including mental health care. Conservative estimates say that each $1 spent on care saves between $10 and $100 in downstream costs (ER visits, health costs, police activity, lost productivity, lost wages, family impact, etc.) Middle-of-the-road estimates place the savings much higher.
Something to think about, in times like these.
Find your legislators here and let them know what you think:
In the US, here’s where you find national, state, and local legislator info: www.usa.gov
The same thinking that underlies racism, sexism, and classism underlies the thinking that says, “Hey, let’s get rid of health care coverage for those who aren’t federal politicians, well-employed, or wealthy.”
The bottom line is treating people as things, and money as the thing of most value.
All humans have something to give, which is only freed up when the basic needs of survival are met; money is a means of exchange but is, itself, neither food nor drink nor fuel nor care. It only gets us any of these things if everyone buys into it as a medium of exchange. That piece of paper has no intrinsic value.
Rational policy is based on the understanding that humans give and receive value, while money represents a part of that value. Corollary is, money must move around to gain value; letting it pile up in drifts and hold still is bad long-term policy, as Reagan’s advisors can now see.
“Trickle-down” assumed that rich people would spend. Rich people don’t spend. They save and invest. Thus, their money moves as little as possible, in order to keep more money coming back to them, where it stagnates further. The real economy (wages, employment, individual bankruptcies, COL, savings, home-ownership, etc.) is nearly dead in the water, but the stock exchange is doing better than ever; that’s how bad the disconnect is now.
With wages lower than a worm’s belly and the formerly-thriving middle class nearly all gone, most human energy is consumed by the struggle for survival. We have, in fact, enough resources and infrastructure that the only people who need to work are those who really want to (that would still be far more than half of us; stop seeing your exhaustion as laziness.)
Given the chance to survive, humans give back. It’s simply what we do. As some cities and a few countries have discovered, with housing, food, and care assured, creativity and productivity blossom. Value grows. Stability grows with it. So does the economy, by the way. Not in leaps and bounds, but at a steady, calm, non-bubbly, sustainable rate.
Weird idea, eh? I mean, who wants stability, right?
I’ll give you a moment to pull yourself together…
Keeping people feeling cheated, disenfranchised, and looking for someone to blame other than those who hold the scales, is a great way to kill that kind of success. Racism, sexism in all its forms, and classism are the key tools used to divide and conquer us.
By request, I’m pasting in a stream-of-consciousness post I made elsewhere about racism. It relates to “living anyway” because, as with having a horrible disease, having and not having race/gender privilege does NOT have to poison my life, destroy my chances for freedom-within-my-limits, or negate my right to find true joy.
I know you know this about me, but in light of the horrors of the week, I just want to lay this out there, in order to be absolutely clear. Ready? here’s some Isy intensity. (Is-ensity?) …
I abhor racism. I abhor it in myself above all, and every day I try to educate/inform/reflect/analyze/remove a little more from my own mind and heart. I screw up sometimes, and the guilt for every screwup never leaves me. (True. OTT, but true.)
None of us are free until all of us are free. That’s not polemic, it’s basic psychology. The thinking that pulls us apart is irrational and hostile to our individual and collective well-being. Take a course; take two; you’ll see. It takes real work to get through the mental blocks to understand that fully, and classes provide the guidance and support to make that task feasible. It’s worth it.
I take an anti-ism/liberation course or pick up an enlightening book once or twice a year at least, sometimes more if I need it. The reason is this: I shower every day or two, because if I don’t, the stink builds up; same thing happens to the mind of a White woman living in this grubby world. Gotta clean up my thinking, because it’ll inevitably get mucked up by living in my skin in this larger reality.
As long as Native Americans of all ages are systematically robbed and murdered and left uncounted, I’m hollering for justice;
As long as Black people are shot down like amusement-park targets, I’m a co-conspirator in Black liberation;
As long as Latinos are thrown out like trash, I’m a gringa curandera for the soul of this nation;
As long as Asians, from the Subcontinent or the mainland or any of the islands, are silenced, entombed in unmarked graves, and their history erased from these shores, I’m an impassioned teacher of history;
As long as … go on, try to think of a race this country HASN’T systematically trashed. Even Whites — cf. indenture, which has changed its name but not its condition since the founding of this country.
Think the rich are free? Imagine the underlying terror of knowing that 99% of the population would gladly end you and destroy all you cherish. (A bit like the rest of us feel about the forces they keep in play, but still.)
Want to know more? Use primary sources. Nothing is more telling, or compelling, than the words and images of those who were there. Want to know what the data are? Go to the proximal sources — ignore the pundits. Racism, and its toxic twins classism and sexism (including gender isms; graduate class on that coming shortly), poison all didactic thinking to some degree. Look at primary sources, and digest them yourself. It’s worth it.
None of us are immune from the effects of racism. Even loads of money only cushions you, as long as you can access its benefits; it doesn’t make you safer outside your circle. Speaking as someone who changed socioeconomic class dramatically, and rather quickly, I’m strongly aware of the value of having social ethics that don’t lock me to an income bracket or neighborhood.
Nobody, but nobody, is free, until all of us are free.
Hatred is no way to run a country, let alone a life.
Two things come first:
1.Taking care of myself and my relationships, and
2. Finding responsible doctors.
That seems to be ok for now. So, among other business-y things, I’m working on rebuilding my credit rating.
I didn’t mention in a prior post that there are 2 aspects to building credit:
– Addressing negative credit
– Building positive credit
Here’s the progress I’m making. These links and resources are for the US. (I’m sorry for my overseas friends who need this info — if you like, I’ll link to yours and you can link to mine, if you are able to research your country’s policies.)
If a debt is less than 7 years old and it was always yours to pay, it still is. There’s no getting around that. However, it’s worth doing a sanity check on those debts, because, for one thing, they might be more than 7 years old but still showing up, and for another, they might not be yours to pay.
Start with a reality check
I went over everything twice, once to let the white flashing lights and internal screaming happen in private,
and again later when I’d calmed down to see what was really there.
If you owe it, you might pay less
There were a few smaller debts that were definitely mine, definitely in date, and still owed. I called those companies, to make sure the amount and address I had were correct, and paid them off as soon as I could. One creditor had just sent it to collections, which means they had to take a few cents on the dollar, and they’re a small company. I offered to pay it straight to them and she almost cried. (I now have a friend in Maine..)
I find that business people are super nice when they find out you want to pay them, after thinking they’d lost that money forever! They made it as easy as possible. If I’d had debts in 4 digits instead of about $100 each, I believe I could have negotiated for a discount and payment plan by talking directly to the company. I never spoke to a collection agency; I might have found a good one, who knows, and settled cheaply.
If you don’t owe it, point them to who does
I sic’ed a hospital and ambulance company onto Medicare for medical bills that should have been directed to them anyway. They were 4-digit debts, so it was a relief to discharge them; however, more to the point, they were not my debts to pay.
I’m happy to pay my bills when I can, but it’s silly to pay things I don’t owe. I had to check things against the impenetrable Medicare and Medicaid language, but I haven’t heard from those creditors again, so I was right — my health insurance had to pay for that ambulance ride and the emergency care.
If it’s over 7 years, you probably don’t owe it
The biggest bill is out of date. Imagine how my head spun when I realized that! it turns out I have one major debt still on my credit report, but it’s from 8 years ago. Since they’re only allowed to stay on the report for 7 years, I wanted credible guidance for wiping that off my report.
How to handle creditor errors
Most online pages tell you to report to one of the Big Three agencies and trust them to take care of it. I found out the hard way that the Big Three are not the definitive players in the financial world; they’re only 3 out of (possibly) a dozen or more. Furthermore, the Big Three don’t have an obligation to report the change to other credit agencies.
Here’s what you really need to do:
1. Make 2 (or more) copies of your documentation of the error.
One copy is for the company that made the error: in my case, the bank that forgot to take off the bad debt after 7 years. Extras are for any disputes you want to file with the credit reporting agencies (Equifax, etc.) Happily for those of us with limited attention, the company that made the mistake is responsible for making the correction with every single reporting agency it reported your problem to.
This documentation can be the credit report you got from CreditKarma or your mortgage application, or it can be from whatever documentation you have that shows the very last payment you made, or the very last time you told them that you’d pay, whichever comes later. That date is when the clock started ticking.
(This is why it’s vital NEVER to make promises to financial institutions. Either pay, or don’t pay, but don’t tell them ahead of time. Your word binds you as much as paying money does. Tell them as little as possible. My formula is, “I understand that you want to be paid. I would, too. I can’t do that right now, but I will let you know when I figure out what to do.” This is honest and clear, and totally avoids any suggestion that I owe them or will pay them.)
Despite anything they say, it’s not about your honor, it’s about their profits. Your survival does not matter to them; getting paid does. Remember that. It’s all about money for them, because that’s the way the laws are written that govern them.
2. Mark up your copies, either in a colorful ink or by taping notes to them, whatever works for you. Be specific about the most important problem; in my case, this would mean circling the dates of the last payment in red ink, adding the note, “This is over 7 years old.”
3. Write a professional, brief, factual letter to the company that made the mistake.
Here’s a good template from the FTC itself:
4. [optional]Go to the website of each credit reporting company that told you about this problem. Follow their instructions for filing a dispute about a record, and submit your marked-up copies however they ask you to do so. (You might need to scan them in.)
Format for letter to clear up errors in your credit record
If you have trouble with all the square brackets in the FTC’s link above, here’s a simpler version, based on my issue (you’d change it to reflect yours.) It looks funky here, but I just tried copy-pasting it into Word and it looks perfect:
My Billing Address
My City, State, Zip Code
My Old Bank's Name
City, State, Zip Code
Dear Sir or Madam:
I am writing to dispute the following information in my file. I have circled the items I dispute on the attached copy of the report I received.
This ____ is inaccurate because _____. I am requesting that the item be removed to correct the information.
Enclosed are copies of ____, ____, and ____ supporting my position. Please reinvestigate this matter and delete the disputed item from my credit reports as soon as possible.
my illegible scrawl
Credit report with old date
Copy of FTC or CFPB page stating 7-yr limit
Whatever else would help make the point
Sources of info: the good, the bad, and the pretty-but-useless
The financial industry’s job is to make money, not to be fair or to take care of the needs of non-financially-savvy people. The laws are written that way: their job is to make money, and devil take the hindmost.
The CFPB exists to give consumers a better chance of survival in this top-weighted economy.
After wading through dozens of pages on consumer debt and credit advice, the best, clearest, most useful information turned out to be at the CFPB and the FTC. I strongly suggest going right to those pages to find answers to your questions.
Also, the CFPB has ways of helping you if you think you’re getting screwed in spite of following the right steps. Look for the helpful links on the page you’re looking at, in the text or over on the right. Don’t make yourself crazy; make an honest effort within your limits, then go to the CFPB site, explain your situation, and ask for help (if necessary, use the term, “as part of an ADA accommodation for my disability, which affects abilities required to do this” — that’s a magic phrase that means you don’t have to jump through as many hoops as a healthy person in order to get help.)
A note on credit reporting that you won’t find on most sites
I found out that there’s a wrinkle to credit reportage in the US that explains why the “Big Three” (Experian, Equifax, etc.) are such a small part of the information yielded in in-depth credit inquiries, like mortgage applications or some brokerage accounts. They’re called credit bureaus. They are an added layer between creditors and reporting agencies: they collect info from the creditors, and pass it to the reporting agencies. You’ve never heard of most of them, unless you’re in the industry.
This is why the info from the Big Three is only the tip of the iceberg. Very annoying. I’m going to mull this, and maybe ask the CFPB about it.
What’s a Statute of Limitations on debt?
Each state has a statute of limitations on debt that’s usually less than the 7 years that a debt can stay on your record. The difference between a statute of limitations and how long it can stay on your record is this: a statute of limitations simply defines how long they have to file a lawsuit against you. They usually have to file a lawsuit within 2-4 years, but they can keep that black mark on your record for at least 7 years.
When I was a young adult, lawsuits were rarely filed for consumer debt. It wasn’t profitable enough, and besides, preying on consumers was considered bad business practice in the long term. Bankers blamed themselves for judging poorly; they didn’t see non-rich people as legitimate prey.
Since then, in the wake of the irrationally predacious financial practices that trashed the US economy from the middle out, suing and criminalizing debtors has become a big business. Please see the comment below from Sage for more on this topic; she has grabbed a couple of links for further info on this.
NEVER IGNORE A SUBPOENA. Ignore anything else you want, but if you ignore a subpoena from a court, you’re turned into a criminal automatically and can be arrested on sight.
Remember, it’s not about you, it’s about money. It’s all about money.
If I got subpoena’d (again), I’d call the court and sweetly but firmly request ADA accommodation regarding time and place, so I’d be physically able to attend. Then I’d show up in court, bank statements and disability “award” letter in hand demonstrating my financial straits, explain that I’d love to settle for, say, 20-30 cents on the dollar (which is the most they can expect, and more than nothing!) and set up a payment plan, but the creditor wouldn’t work with me.
The judge can order them to work with you, and it’s perfectly reasonable to look for a settlement that’s much less than half of what you originally owed.
I’m White and know the lingo, so I have two huge advantages in court. Nevertheless, it’s best not to ignore a subpoena, because doing so automatically criminalizes you. It’s not fair — in fact, it’s blitheringly crazy — but that’s the way the laws are written now.
To build positive credit, you find reportable debts to take on, keep within limits, and pay them off on time every time. There is no workaround to that.
If you don’t have much negative credit, you might be able to take on a signature loan from your bank. Stick the loan in a savings account and set up automatic payments from that account. Never touch it. It’s not yours. It belongs to your future. Consider it Monopoly money, which isn’t legal outside the parameters of the game.
Credit cards for the rest of us
If you entered your illness (or other hardship) with the usual rank of car payments and consumer debts, this may not be an option.
There are a few credit card companies who provide ways for you to have a credit card, usually by putting a certain amount of money in a savings account with them. With some cards, the better your record with them, the sooner they bump up your limits beyond what’s on the card. It’s best not to spend up when that happens, but instead, to let the higher limit ride and stay on target with your payments. The higher limit will work in your favor credit-wise, even if you never use it.
Needless to say, it’s essential to avoid debts you can’t service. Don’t spend more than you do now. Pay that sucker, exactly as the card company tells you to. Every. Single. Month. Without fail. That’s how you rebuild credit.
I’ll use my card for things I buy anyway, and pay it off every month out of my budget for food, gas, clothes, and exactly what (and how much) I’d buy anyway. It’s the same money, it just has to go through an extra step on the backend. More payments to automate, but I can do that.
I aim to wind up with 3 credit cards — one for groceries, one for gas, one for “other”, which will provide an illuminating reality check on my budget’s validity — and pay them off every month. More automation; I can do that. I’ll need 3 cards in order to build up a sufficient positive history as quickly as possible.
This section was added March 2018, regarding a lesson I learned the hard way, so you don’t have to…
“Good credit card utilization” is one way of generating positive credit. That phrase is in quotes… why? Because the meaning of it has changed.
When I was earning enough to get a credit card based on my income (when buggy whips were the turbo-charge of the day), this meant spending cards up and paying them off religiously. At the time, people who ran high debt on their cards and then paid them off every month were the ones doing it right.
I didn’t remember any current advice to the contrary…
So, I was approaching mortgage-application time (my goal), and had one of those jumpy bursts of misguided energy — “Maybe I don’t have enough positive credit! Quick, spend up and pay off!” I put all my expenses on my card. Predictably, in the helter of distraction and the skelter of all the other things I’m juggling, I was 3 days late on that payment.
Next thing I know, my glowing golden credit score dropped more than 100 points!
I dug into that. It wasn’t the slight tardiness. (I’ve automated minimum payments so I’ll never be late again. Should have done that in the first place!)
Credit Karma told me, “Oh, by the way… you want to spend your credit cards only up to 30% of the balance. Otherwise lenders assume you’re irresponsible and overuse credit.“
It’s no longer just about paying off. It’s about using less than a third of the debt you’re supposedly able to carry.
Yup, you’re right: Finance is a very weird business. It has rules rather than logic — although my finance relatives insist it has its own logic. (Speaking as an American who has kept an eye on financial events for the past 30 years, all I can do is smile politely. Logic? Is that what it’s called? Heheh… Okay!)
I would have rather learned that “30% rule” when I was doing the original research on this article. But hey, better late than never, right?*
When you use credit cards to develop positive credit, be sure to charge no more than $30 out of every $100 of credit to your account.
So, a $500 credit limit means you only spend $150 of that credit before paying it down. $300 means only spend $90 — seriously. $700 means $210 in usable credit, before you have to pay it down or suffer the consequences.
Keep your balance below that 30% mark.
This is key to protecting your score while developing positive credit with credit cards.
*“Better late than never” may not be right after all. The party currently in charge of the US government chose to gut federal HUD (Housing Development) funding. Therefore, waiting for this blip to age out may destroy my chance to get any low-income home-buying support… not to mention rental support or any housing support at all.
That’s not just about me. A significant rise in homelessness — and all the dimensions of costs that go with that — is a great thing for a great country, right?
Or not… I grew up in a country where homelessness was rife. It was a third-world country and didn’t have our resources. We have no excuse.
fill it out for a replacement copy (not an original copy), send them my passport (the original, not a copy — gulp), and trust them to get that and the card back to me via snail mail.
For a change, there’s no fee.
It’s an interesting leap of faith. After being so stunningly betrayed, almost to being killed off, by the SSA (which, in Oakland, lost, delayed, destroyed, and poisoned my Disability app for years; I documented their illegal shenanigans, and was granted instant SSDI when I moved East and submitted my records) and the post office (where, in Alameda County, they stole my mail regularly, especially anything from the government and insurance company), it’s definitely an interesting leap of faith to trust these organizations with my most valuable documents and this aspect of my future. I’m hoping that East continues to be East for me, and West remains out West.
Alternative, more realistic credit reporting is in reach!
Another new piece of info I learned is that there is a legitimate, useful credit reporting agency that’s consumer-driven, rather than financial-corp driven. Major lenders, including lenders who work with those of us who are not rich, have signed on to receive their credit reports.
This agency is called PRBC, which stands for Pay Rent, Build Credit. You plug in your monthly payments, including phone bills, utility bills, dental bills or court fines on a payment plan, rent, and so forth; any recurring payments — and all of that goes to building your credit history.
These things are normally ignored, oddly enough; only consumer-debt-based payments and tax problems — the most prejudicial and the least useful of the normal person’s financial activity, if you think bout it — are normally included in credit scoring, and somehow this is considered normal and appropriate.
Those of us who’ve always paid rent and phone and kept the electricity on, even when we lost everything else, can really benefit from this. I wish I could backdate it 7 years, as that record would do me a lot of good in the mortgage market.
I ALWAYS paid rent. I did without food to pay rent. I let the phone go to pay rent — and I still feel an aching stab of gratitude to the 3 friends who took turns keeping my phone connected, most notably the last one, who stuck around longest and was there when I finally got paid.
I’d have loved to put THAT on my credit report. It would do a lot of good against the debt-based credit I couldn’t maintain when I couldn’t work and had not yet gotten the barely-adequate disability payments that put me back on track for ongoing survival.
If you’ve had to trash your consumer debt in order to survive, but you’re still finding ways to keep a roof over your head and utility bills paid, it may be worth the fairly small effort of signing up with PRBC.
Downside: putting up with more junk mail. Upside: having your real-life level of responsibility documented in your favor.
I still mull the real value of having credit if you can live on a cash basis and don’t ever want to make payments on a car or mortgage, and you live in an area where getting rental housing doesn’t involve credit checks. As long as you stay in those stringent parameters, there’s no need for credit.
However, I really want to get a bit of property so I can have whatever pets I like. I really want to have the option of replacing my good and sturdy, well-adapted vehicle in the fullness of time, without being obliged to pay the full price up front. We shall see.
For me, it opens up options, and after 15 years of having fewer and fewer options all the time, I’ve rather enjoyed the opening-up of recent times. I’m motivated to generate even more options.
So, I’ve signed up for PRBC and today I’m off to the post office to send off my form and passport (gulp) to get a copy of my SS card so I can apply for an Open Sky credit card and start building positive credit. I hope I can keep it together and on track this weekend to write that letter to my old bank, and get that in the mail next week, to address the biggest stain on my negative credit.
I might be slow on these tasks (this represents 5 months of pixilated — and pixelated — brain-work)…
… but, by gum, I intend to get there in the end.
Update: Christmas Credit Scores
I didn’t say this because I was too embarrassed, but I had an initial credit rating in the 530-550 range (or, as one banker put it, “Very little credit, and no positive credit”, which is a terrible thing to hear.) I think I now have the best credit score of my life, a handy thing to have in hard times:
Regarding the second image (710), it’s worth noting that the key to a solid and sustainable credit score is accuracy. I intend to resolve every error so that the credit I’m looking at is really mine, because I only control my actions and can only monitor my activities.
Once others get into the mix, even if they temporarily elevate my score, that won’t hold up to the kind of inquiry made in significant searches, like mortgages — or like the incredibly invasive and expensive financial inquiries made by Massachusetts Medicare, called MassHealth.
…Because going over thousands of poor peoples’ finances with a nit-comb, making sure they’re not able to generate any savings, prepare at all for uncertain futures, or give back to charities they’ve used, is such a great way to encourage good financial practices and a terrific use of tight taxpayer dollars… sigh.
Can’t they see the forest? Nope; too many trees in the way! They’re too busy dealing with that to look up and notice what they’re, um, actually doing…
Quick brain dump here. There have been a lot of questions lately about treatment options. THIS LIST IS NOT EXHAUSTIVE. It’s barely an overview. It’s just a note I worote in answer to someone who asked about prolotherapy, where a sugar or basic solution is injected into a painful area and the harmless irritation causes just the right kind of healing bloodflow for some people. Here is my answer…
Prolotherapy is one of those things that works great when it works at all. It’s definitely individual-dependent. The tissue irritation, so helpful to those who don’t have spastic vessels, can do a number on us. But not everyone.
If your CRPS is more peripherally maintained, then it might help, assuming the irritation does what it’s supposed to and the tissue response doesn’t trigger autonomic dysfunction, with circulatory weirdness and the whole color/swelling/pain circus that comes with it.
If your CRPS is more centrally maintained, which is kind of a hallmark of the ongoing disease, then I don’t see how treating the area with anything, let alone an irritant, would be any good. It does nothing for the central part of the nervous system.
I consider myself lucky that the usual pain meds nearly killed me, and I had to go the diet modification/supplementation route almost right away. Eliminating things that irritate my central nervous system, and supplementing with things that help repair damaged nerves and fragile tissues, was absolutely essential. If I hadn’t done that, I wouldn’t have lived long enough to do anything else.
At the risk of starting a shooting war here, the MCS (multiple chemical sensitivities) and neuro research hounds I’m close to, indicate that the most common neuro allergens in the diet are gluten (wheat, rye, barley, spelt, triticale, “natural flavorings”; oats have a similar molecule, so YMMV), corn (especially corn fractions like HFCS and “natural flavorings”), fresh dairy (which an incompetent gut like mine breaks down into a molecule a lot like gluten), MSG (often wheat derived), phosphoric acid (found in most dark sodas), and benzene (anything with the syllable “benz” in it — read labels, or better yet, don’t eat things that come in packages, which usually have BHA or BHT added to the packaging.)
Common neuro allergens in the environment include petrochemical products (photo chemicals, printing chemicals, gasoline, many cleaning products) and most chemical scents, most notoriously the line called Axe, which may trigger psychotic breaks in vulnerable people, according to disturbing reports.
A couple of techniques do address central sensitization:
– Calmare, which is a subtle, varied, electric signal that rescrambles the pain impulses and has given many CRPSers outstanding relief.
– Ketamine, which is an anesthetic that sort of reboots the brain. It must be administered by a competent physician well-trained in ketamine administration for CRPS, as it’s still a dangerous drug, but with right matching of patient to protocol, it can work wonders.
– Spinal cord stimulators. These are surgically placed and can be highly problematic, but if they’re the right thing for you, they can give you your life back to a large degree. There are electrodes shoved right into your spine, so if your pain is mediated mostly in the brain, not so good. If it’s still at or below the spinal root, excellent.
As for supplementation, which you don’t need doctors to do … Good, health-food-store supplements are essential. Don’t waste your money on the plastic pills at the pharmacy (check Consumer Reports to find out just how bad they are.) Your body is burning through nutrients desperately fast all the time. It can’t keep up. We need a healthy diet so as not to bring in more problems, but we can’t possibly meet our needs that way any more, with all the pain and the other cellular and metabolic insults of CRPS.
The nerve cells and muscle cells are the biggest suppliers and the biggest consumers of antioxidants. As muscle cells degenerate and nerve cells take a beating, they need more and more but can produce less and less. The math catches up to us after awhile and then it takes time for the supplementation to penetrate enough of the starved tissue around the gut to work its way to our CNS — but, from my experience, it was well worth it! The time was going to pass anyway, and I was better at the end of it.
Neuro-oriented antioxidants include SAMe (a type of methionine, primal antioxidant used inside the mitochondrial cell), N-acetyl cysteine (NAC), and co-q 10.
Vitamins A, D, E, K, and moderate amounts of C are important, especially the D3 — much bone loss and the concomitant pain could likely be avoided if we all had our D levels checked and then supplemented accordingly.
(I’ve been told that C can become pro-oxidative in a sickly environment, so I have to look into that.)
B vitamins are absolutely crucial to neuro and other cellular repair, so a good B complex is important.
Magnesium, whether as lotions, Epsom baths/rubs, or supplements, is essential. It’s simply huge for cutting spasms, which underlie so much of the nagging side of the pain, and supporting basic cellular functions as an electrolyte.
There are supplements that can provide precursors to neurotransmitters, and I find they roughly double the effectiveness of my SSRI and SNRI, keeping me in the low-middle range of doses instead of me getting overdosed to near dying as I once was. Phenylalanine is a precursor for dopamine and norepinephrine, and the d,l form has been found to be genuinely helpful in reducing nerve pain for many. It also helps me stay less confused (dopamine, perhaps.) 5-HTP is widely known as a serotonin precursor, as is tryptophan. Both can help with sleep, too. I do better with 5-HTP.
There are a lot of brands, and there’s a lot of behind-the-scenes business ugliness behind the brands as the whole “natural everything” movement creates the possibility of money. I’ve watched the circus for awhile, and at this point, there are just a few brands I can recommend as still being good, consistent, and generally digestible:
Jarrow (great antioxidants)
NOW (inexpensive and very good; I always get my 5-htp from them)
RAW Vitamin Code (a Garden of Life line of food-based products, excellent; I take only half the recommended dose of the multis, and boy do they help)
Twinlabs (my second choice for multis and neurotransmitter supplements; widely available)
Solgar (pricier than Twinlabs, but much the same; widely available)
My fallback brand is Life Extension, which is still excellent.
I get mine for wholesale at vitacost.com (fast delivery, but don’t carry Jarrow), luckyvitamin.com, or occasionally for a bit more at Amazon if the others are out of what I need.
It’s a hideously complex disease, and in cases like ours where conventional medicine has almost completely failed, we have to take charge of that complexity and redesign our lives in order to have something worth living.
We really do have to change or die, and it is a surprisingly hard choice at times.
Further comments and suggestions on treatments and management would be most welcome.
This is probably the simplest, most powerful tool for getting your complex care back into the realm of sanity.
It’s easier said than done, but it’s worth it. More valuable than words can say.
It’s a fairly simple 3-step process:
Get copies of your medical records.
Prepare: understand the records, get a colored pen, and stock up on post-its.
Mark it like you own it.
Here’s the step-by-step rundown of this process, with insider insights, tips and suggestions. (I apologize in advance for the clunky formatting. I’ll work on it.)
1. Get copies of your medical records
[Updated 3/2018 to reflect current trend towards soft copy documentation.]
In the US, you are LEGALLY ENTITLED to all the information in your medical chart. (Worker’s Compensation is a special case; you can still get copies through your lawyer or sometimes directly from the doctor, but don’t talk to the insurer about any of that.)
To get copies,
A. Call the hospital, clinic, or office and ask for the Medical Records department.
B. Ask what their process is for obtaining copies of your medical records. Most MR departments are honest, understaffed, and extremely literal-minded. Be clear, frank, and polite-but-not-wimpy; that seems to work well with the MR mindset.
i. Some will let you come into the office and make your own photocopies. They may charge you for the copies. Some may have soft copy they can send you on a CD or provide a secure way to download.
ii. Some don’t allow non-staff into the department and will make the copies for you (and it’s best to provide them with a list of what you want, so they don’t provide you with the usual thin, doctor-oriented version. More on that later.) They will probably charge you for pulling the record, making the copies, reassembling the chart, and packaging your copies up for you. They might fax them to you, but, if they don’t require you to come in personally and show ID, then the chart copy is usually mailed or FedExed. Soft copy may be free or cheap. Ask about the cost for each method, and if they don’t offer the method you want, ask if they can provide it anyway.
iii. Some will give you the runaround. In that case, be polite but firm, and let them know that you have a legal right to the information in your chart, so let’s figure out how to get it to you. (Never buy into a power struggle with petty power weilders. Just refocus on the goal — like with toddlers.)
iv. If you had films of any kind (X-ray, MRI, CT scan, ultrasound), ask how to get those films. You usually get them directly from the Radiology or Sonography department rather than Medical Records. They’re most likely to drop a CD in the mail for you. You’ll need software that can view DICOM images — do an internet search to find the best current free application for reading DICOM files.
The radiology departments no longer use film. They used to recycle it every 2 years, so the only way to keep those records was to get the physical films and hang onto them despite promises they’d demand to return them. That didn’t mean you were any better or that the film was irrelevant in two years!
C. Follow the instructions they give you for getting those copies. Be sure to request copies of the following:
i. Doctor’s notes, both narrative notes and forms.
ia. Consults’/Specialists’ notes. (Yes, they need to be specifically requested in some facilities.)
ii. Medication orders. This is what was supposed to be given.
iii. Medication Administration Record (MAR.) This is what was actually given.
iv. Nurse’s notes, both narrative notes and forms. (These days, some places only have forms.) These should include Nursing Diagnoses (which gives a good idea of just how worried or confused they were about you) and daily tracking of what care was needed and provided.
v. Vital signs and intake/output sheets. (Includes fingerstick blood sugars when used.) This is usually background information, but every now and then there’s a nasty surprise. There is no substitute for the clarity and simplicity of this info.
vi. Results of tests. These include labs taken from your blood, urine, stool, saliva, tissue samples, or whatever else they examined. It can include psych tests, behavioral tests, and any other test.
vii. Readings. This refers to what a trained specialist concluded from looking at your films, ultrasound, EEGs, EMGs, EKGs, and so on. It’s usually a couple of paragraphs.
viii. Rehab notes: narrative notes, test results, and forms. This is what your PT, OT, and other rehab specialists saw.
ix. Discharge planning notes. Discharge planning is supposed to start as soon as you’re admitted. These notes will tell you what they knew or assumed about your context and abilities. Very useful info between the lines.
x. List of charges. This is what they’re telling the insurance company they did for you and how much it cost. This should include pharmacy charges as well as “floor” charges. Another place to find both corroborations and surprises.
xi. If they say, “Would you also like [something else in the chart]?” The right answer is usually, “Why yes, thank you, that would be helpful.” Sometimes they offer it because they’re so detail-oriented, but sometimes they offer it because it fits into the pattern of the care you received. Feel free to ask why they suggested it or what it relates to.
D. When you get your chart copy, either scan it into your hard drive before you do anything else, or make 2 more copies and put the original (clearly labeled) somewhere safe.
Some people consider this step optional. I won’t argue with someone else’s working style or legal situation; you’re the one best-qualified to decide how protective to be of your chart copy.
I have everything on my hard drive. I have dealt with a hospital, a federal agency and an insurance company that forgot, mislaid, misread, or destroyed part or all of my chart. I don’t trust any institution to get it right any more.
When your original copy of your chart is as safe as you want it to be, take a copy to mark up. This is where the real fun begins.
A. Read the whole thing over once. Try not to get bogged down — this quick run-through will help you familiarize yourself with the lingo and the special way of thinking that’s used in the health care field. It will also give you an overall idea of what you’re working with and will shine a light on the most obvious gaps — in your knowledge or vocabulary, or in theirs. Put flags in the strangest, most egregious or excitiing parts, so you can refer to them quickly. Use post-its to comment on the page.
B. Whether or not your first read-through is quick, your second read-through will be a LOT more informative. Pick out and investigate the obvious holes in your own knowledge, looking up words and concepts that aren’t clear, or checking your assumptions about what they meant.
C. (You can start doing this in 2.B., but you’ll be better-equipped if you wait until you’ve got your vocabulary and assumptions squared away.)
GRAB A COLORED PEN. Mwahahahahahahaaaa!
Red, green, dark pink, and medium purple are all great, because they stand out so well from the black and grey of the copy. Use a color you enjoy commenting with, in a pen that feels good to write with.
No black. No grey. Blue if you must, but it’s a very “normal” color and easy to overlook.
3. Mark it like you own it
Now that you’re prepared, are familiar with the chart, have the hot spots flagged, and know the vocabulary, you’re ready to TAKE BACK YOUR CARE.
A. Go through the chart with your colored pen.
B. Mark everything that is wrong, misleading, or unclear. (Feel free to color-code, if that works for you.)
C. Comment on:
i. what the real deal was,
ii. what was wrong with what they wrote,
iii. your own observations,
iv. any evidence or witnesses,
v. and — this is usually relevant! — where else in the chart this error, confusion or lie is brought into question. (This is why you get the nurse’s notes. They tend to be accurate, front-line reportage of what happened at the bedside.)
Generally, you can keep emotions out of it. The facts WILL tell the story, and the reader’s own emotions will fill in the blanks. If you can do this, then you will wind up with a much more powerful piece of documentation than if you’d given into the natural urge to editorialize. Sometimes, if I’m just too mad, I editorialize (and use expletives and call names) on separate paper, then, when I’m calmer and my thoughts are clearer, I go back and write in a calmer note.
D. Write (or tabulate, or draw; whatever works for you to nail your understanding) a summary of issues with the chart.
i. Pick out major issues, overarching issues, and the points where things really should have gone differently. (If you’re writing, use headings — that impresses the heck out of people.)
ii. Summarize the whole thing in a paragraph or two at the end.
4. Now what?
It’s up to you. You have documentation that is worth presenting in court. (Yes, believe it or not, you can talk until you’re blue in the face and be only tolerated, but if you really want to persuade highly-educated people, then put it in print — with annotations. They will believe exactly the same thing in print, that they’ll be incredulous of when you speak.)
Regardless of what happens next, you will have a whole new approach to medical care. Your perspective on the whole business will change as a result of doing this exercise. You will be much more collegial with your doctors — much less the supplicant praying for something beyond your control. You will speak about your care with more clarity and authority, and your care providers will respond to that, usually with more forthcoming-ness and respect.
Depending on the issues involved (and whether your case is already part of a legal process, such as Worker’s Comp), you can:
Send a (color?) copy to your attorney. You can always do this. It’s guaranteed to get some attention, and your attorney is liable to respond well to the nonverbal message that this is important enough to you to go to all this effort. That’s a big deal. Most clients of attorneys are kind of helpless. You set yourself apart with this.
Take it with you to your next visit with a key physician — the worst offender, or his boss, or the one who’s on your side and can help you figure out how to proceed most effectively. Be prepared to let the “good guy” take a copy, and consider bringing a copy for the “bad guy” since you don’t want to let your copy out of your hands there.
Arrange a meeting with the facility’s adminstrators to address the hot issues. Take it with you (or scan copies and show it from your laptop — lots of tech assumptions there) and let them know, kindly and clearly, what you want them to do about it. Administrators tend to be goal-oriented, so give them a goal. Tip: If they have legal counsel present, it’s good if you do, too. In any case, it’s not a bad idea to bring a couple of respectable-looking friends (“my assistants/associates/posse”) who have faith in you, for moral support — and so you’re not all alone on your side of the table.
Send a color copy to your local paper, your congresscritter, the medical board for your state, or the Department of Health, with a cover letter explaining your concerns and what you would like to see change. This could raise some attention, all right. (If your case is currently in a legal process, it may be illegal to do this. Ask your lawyer.)
If you’ve never done this before, you’re in for a transformative experience. Even if you do nothing further with it, your situation will feel very different, and you’ll find yourself facing future care with a stronger, clearer, more in-charge attitude.
I feel like I’ve been inflated. If I get any larger, I may collapse in on myself and form a neutron star — possibly even a black hole.
My pain psychologist isn’t worried. She thinks there’s nothing wrong with “a little comfort weight”, especially as I’ve been making such progress in her area. Of course, she has a slender elfin figure herself.
This isn’t the usual rant about weight and health, or the girly American whining about fat. This is about living from the inside out, and what happens when my physical vehicle takes up a whole lane.
Nursing has a diagnosis called, “Body Image Disturbance.” Take a look at that phrase for a minute. It’s very telling.
Body Our physical interface with the world; the medium we use to communicate with others; the first sensory impression we get of our surroundings; the complex organism that gets us from one place to another; the thing that gives others their first sense of who or what we are.
Image Our mental framework, or paradigm; the belief or understanding we have about our presence or effect in the world; the way others tend to think of us; the way we think they think of us.
Disturbance Something awry — probably disturbingly so. Not good.
Do we need to address the usual social issues? Yes, skinny people get treated better, all across the board; fat people are far more likely to get abused and overlooked, and not just for sex — for everything. Lots of people have made lots of money writing lots of books about that, so read them if you’re confused.
Let’s move on.
I’m in a different sensory and physical world from what I’m used to, and it’s a really strange one. The experience of physical life from this different shape is, yes, disturbing.
My feet are pressing so hard against the ground that my shoes fit differently. When I carry something, it pushes my weight over the tolerable limit and threatens to bring the CRPS in my feet back to life — and I had just about gotten rid of the pain symptoms there. The circulatory symptoms are another matter — zombie-foot is a regular event.
My cat floats above me by quite a few inches, when he should be lying more or less on my abdominal muscles plus a blanket of padding. It’s weird to have to reach so far up from my spine to pet him — my shoulder rotates much further in my cuff than I’d expect. I’m getting better at feeling my joints, and this is not exactly a positive feedback loop.
My upper arms keep catching against my sides. This is rather disorienting, since I’m improving my sense of my body in space and usually, when my arm catches on something, it means I need to increase the space between me and foreign object. There’s no foreign object. It’s just more of me. Weird.
I had a sway in my lower back which I managed to straighten out awhile ago. Better spinal posture means less pain overall. So now I have a substantial, unstable weight hanging in front of my spine, which means I have to work my abdominal muscles really hard to pull it closer to my center of gravity so I can just stay in balance.
My abs are killing me. If I don’t use them, my lower back hurts me worse, so those abs are constantly on duty.
I give them a break and relax them when I sit down — and it’s like being on top of a balloon that inflates, as my stomach takes over the lower horizon.
I poke it curiously, wondering how far down I have to go to find the original outline. I give up at the second knuckle. Too discouraging.
When I sit in my car, my right hip brushes against the driver’s armrest. First thought: I’m over too far to the right; my hip shouldn’t be near that. Wrong. I’m dead center. It’s my hip that has travelled far.
But there is an up-side. When I fold my hands together, I have a perfect armrest. Soooo comfortable. It’s like it was made for me!
And the stares I used to get — or rather, that my endocrine-disrupted DDD cups used to get? Gone. No wolf-whistles or dribble on the sidewalk from creepy slimebuckets who seem to think I should be delighted at their lack of self-command. Nobody’s goosed me or grabbed a feel in ages!
It’s very peaceful. Makes it a lot easier to feel at home in my own skin, not to be bracing for the next random invasion of privacy.
I’m no longer constantly holding a sharp elbow at the ready, to fend off some suddenly-clumsy dude who goggles briefly, with a word-balloon appearing above his head that says “are those real?”, then says “oops” and bumps into my pneumatic (and sensitive) form as if by mistake. I got so freakin’ tired of that!
Perhaps a leather vest with spikes all around…
This, incidentally, is why so many women feel comforted wearing a burka. It makes the wearer more sexually invisible and insulates her from much of this random predatory crap.
My fleshly burka. Take that, right-wing-nuts — of any religion. You don’t even WANT to control this.
And, in a huge relief to my CRPS-riddled body, nobody wants to slam into it now, either. Yesssss!
I’ve got to get that vest. I can’t, and don’t want to, keep the fleshly burka, but I have to find a way to manage the body-slams. Never again.
As for food… Here’s what I’ve learned for the current incarnation of CRPS endocrine/digestive ballyhoo:
– No grains of any kind. No lentils or beans.
– No dairy, except small amounts of hard cheese — the protein sufficiently altered that I can handle it in small doses.
– No sugar at all, but more unrefined stevia.
– I’ll have to get kefir “grains” and make my own water-kefir. I have some ideas for that.
I still have most of the world of nontoxic produce, nuts, and meat from healthy animals to sit down to. There are worse things… It isn’t cheap, but I’m learning where to shop. And it sure tastes good.
P.S. You want what?? Measurements, weight, photographs? They miss the point. I’m not looking at me, I’m looking from me.
I’m not comparing myself to anyone or anything. This is simply the view from inside. Hope it’s worth a laugh or two 🙂
Last night, in an effort to give my autonomic nervous system a chance to calm down, I turned off my lovely hostess’s wifi while I slept. Eventually, I did sleep, after several hours of meditation.
Why the insomnia?
People change with time. My sweetie is discovering that in the harshest way. A friend of 20 years is sinking into the pit of addiction and her transformation has put him at considerable risk, due to the company she now keeps and what they think of him.
I hadn’t heard from him since midday yesterday, and since we had agreed to call twice more that day for different logistical reasons, not being able to get hold of him was deeply worrying.
I followed my inner prompting to head away from the coast (where another storm is heading in, this one bitterly cold) and get to Cleveland, with the option of flying out from there to get to California to do whatever was needed for my sweetie.
I took off at 9:30 (woefully early for me) after plugging the router back in and forgetting my jacket — which my lovely hostess chased me down to my parking spot to return.
Worth a thousand words
Dr. Goyal and White Plains Urgent Care were a small parking lot and two buildings over from where my nav device had placed them yesterday. /sigh/
She was saddened and intrigued by CRPS, making notes in the margins of my sheet. She was initially somewhat dismissive of my description of the bite, because this morning it was being coy, hardly red at all.
I said, “I knew I should have taken pictures. Let me draw you a picture.”
Despite my having explained its vacilating nature clearly, I know from long experience that they need to see it to believe it.
So, using the big white paper sheet they have you sit on, I sketched the bite when I first noticed it, half a day later, a day after that, and so on. I wound up drawing a series of concentric circle patterns, growing, then shrinking, then growing, then shrinking.
I finished by drawing an arrow from top to bottom and saying, “Would you trust that pattern? Because I wouldn’t.”
I walked out with a prescription for 3 weeks of doxycycline and having promised to follow up with my CRPS specialist.
I know it’ll take 3-6 months just to get my insides back into any kind of order. Could take up to a year. I had a bad feeling about this bite, so I’ll consider it time well spent.
When people talk about Mercury Retrograde, this is what they mean
While I was in there, my lovely hostess texted me: “Internet still not working – what to do?” An hour (and a lot of non-Mac behavior from her Mac) later, my best answer was, “Call the cable company; it’s a hardware problem.”
Doing unsuccessful telephone tech support for one dear friend behind you, for a problem you might have caused, while driving at highway speeds on strange roads, when you’re sick with worry over another dear friend ahead of you, is not something I would recommend. In fact, now that I can check it off my bucket list, I think I’ll try not to do it ever again.
Her life depends on the internet even more than mine. It’s not optional. I wanted to whip around and ride back to save the day … but for the lashing in my brain to go on, and the fact that her hands work better than mine and I know the interfaces by heart, so there was nothing — in practical terms — that my presence would have added.
I had a fierce feeling that, if I could get far enough away from the tangled vibes behind me, both of these problems would resolve themselves.
So, with solid logic on one side of me, and crystal-clear intuition on the other, I charged ahead.
I crossed the New Jersey/New York state line. Then my lovely hostess texted me to say that she had found a second loose connection — and that the internet was now working fine.
How to search for someone who’s gone missing
I crossed into Pennsylvania. I’d been stopping every hour to stretch and breathe, but I couldn’t stop mulling my sweetie’s situation, so I pulled over to start the legwork of searching.
Here’s the drill. The order varies depending on what you think the situation is, but, when someone has gone missing and you fear the worst, I find it’s very soothing to rule out the worst as soon as you can bear to:
– Contact the police in the area you last knew them to be in. (Use the non-emergency number; the goodwill is worth the effort.) Have they had any dealings with that person? Car accident, fight, anything? One of the first things cops do is ask for ID, whether it’s appropriate or not, so they’re likely to have records of even minor events. – The police can connect you to the morgue. Rule out the worst, breathe a sigh of relief, and move on. – Call the hospitals. – If they aren’t admitted to the hospital, ask for the Emergency Room admissions, which may be a different number.
If all of those turn up negative, count your blessings and wait for them to get back into signal range or to realize they let their phone’s battery die.
First, I surfed the police logs to see if anything was reported. If there was any violence, then it’s a small enough town to turn up on the online blotter. Nothing matched.
I mulled whether it was worth calling the non-emergency number to see if they’d had any other dealings, and I decided to go straight on to calling the hospitals, on the grounds that any police involvement in the situation would be blotter-worthy.
Then the phone rang.
And it was him.
I really think there were gouts of steam poufing out of my ears. My eyes closed and I dropped against the door, so I’m guessing, but it felt like it.
He was slightly shaken, but intact, and maybe beginning to really “get it” about how some people change.
He told me emphatically to be careful who I trust, not to pick up hitch-hikers, and be careful who I talked to.
Naturally, I promised him that I would.
Just for the record, I have really great friends who always have my back to the best of their ability. I am one lucky human, and I know it. Kylertown, PA (don’t blink… No, really, don’t blink, or you’ll totally miss it)
After sorting out some logistics and stopping for a quarter of hot roasted chicken (definitely a local bird — tasty!) I came to the sinking realization that Motel 6 doesn’t go along I-80, and I can’t afford the ones that do.
Garmin is no help, because they just list the upper scale lodgings. Lots of B&Bs, but no cheap little roadside doss-houses.
I don’t need much, and can afford slightly less. It can be a problem.
I stabbed “Kwik-Fill Motel” on my phone’s map. What the heck, truckers know a thing or two about cheap dossing.
I spoke to a woman, which was reassuring; when I blew past the exit (# 133, if you’re curious, and it’s right after a wooded curve) she did a swell sales-job that convinced me to drive the 10 miles to the next exit and come back… and it turned out to be a good decision.
This place has been in business since the 1970’s and has only raised its prices $10 since then. It skips the kitsch, thank goodness. My decent-sized room has the tasteful modicum of furniture with classy Colonial lines, with just the occasional bit of ’70’s carpentry or carpeting peeking around the edges. Decoration and color schemes are quite tasteful, for a motel, and — most importantly — the heater works.
A total find.
Next time you want to come to the wilds of Western Pennsylvania, you might as well plan an overnight at the Kwik-Fill; you can’t do any better, but you could do a great deal worse.
The only downside is, I wasn’t prepared for Pennsylvania water. I’d intended to bring a case of bottled for PA, but it was just like I didn’t have time this morning.
I’m going to run the bath and the fan, and give the whole thing time to clear the copious chlorine. If it doesn’t smell bad after that, I’ll have a nice bath at the end of this roller-coaster day. If it does, well, I’ll let it go and be grateful for the rest.
I recently had a sequence of conversations that showed me where I really stand.
In one, I answered a series of health questions in a linear, rational, consensus-reality style: this did that, the other happened, and this twisted disease all makes sense to the crowd outside Wendy’s.
In another, I discussed the comparative neurogenetics of mice and men like a hardcore science geek, all Cartesian assumptions and classical physics.
Then there was Firefly and Terry Pratchett, fine examples of satire that manage to be curiously strengthening rather than cutting anyone down.
Then a writer friend asked about the 2012 thing (maybe I should capitalize that: The 2012 Thing) and that led to a little discourse on Mayan numerics and calendar theory, galactic astronomy, and the quantum physics behind astrology.
For one thing, I’ve found that reality is a lot weirder than I was ever told. For another, I rather like being what I am: a translator. I can explain neonatal cardiology to a soccer mom, Hunab Ku to a lawyer, international politics to a meth head.
So where do I stand? It just dawned on me that I stand on understanding. (Look at that again, because I just did: stand…on…under…standing. I love it when patterns emerge, even if they’re Moebius strips.) That stance often puts me between two extremes, bridging them with the clarity of the best words I can find at the time.
I don’t need a creed of my own beyond “do no intentional harm”, “we’re all part of something larger (details vary)”, and the like. This adogmatic flexibility is where my balance is. That’s pretty cool. Not normal — normal doesn’t seem to work for me. But that’s fine. This does.