As the title hints, it’s been another fascinating visit with my pain diagnostician.
His current working diagnosis is fibromyalgia, which he characterizes as being capable of throwing some hairy curve balls (my terminology, not his) including the growing litany of food sensitivities, which solves a major problem in my mind.
Thyroid disease can also trigger the symptom complex that otherwise gets tagged “fibromyalgia” (more on symptom complexes in a minute.) I mentioned that I’ve had my thyroid checked several times and last year came up with Hashimoto’s (meaning my immune system is attacking on my thyroid.) Since I developed the first symptoms of this central sensitization around 16 years ago, it seems not like a precipitating event; since “normal” thyroid activity is not the most meaningful term, I’m not sure it’s irrelevant. I guess I’ll learn more as we go on.
He’s also checking my hemoglobin A1c to check for underlying blood sugar instability. I’m always happy to check that. Also B12 (pernicious anemia etc.) and D3.
Now we come to the fascinating (and crucial) distinction between a symptom complex and a disease. Both are used as diagnoses, but they mean different things. (Yes, I’ve used the word “disease” indescriminately here, for simplicity.) Medically speaking, a disease has a cause that can be targeted, what you might call a diagnostic end-point. A symptom complex doesn’t have that level of targeted responsibility for the illness; it’s a consistent set of symptoms that cluster together often enough to get a diagnostic label, which takes some doing.
Here are the two scenarios.
On the one hand, you’ve got someone with a lot of pain, funky guts, sensory reactivity, and normal labs. The doctor (we hope) rules out any other possible cause, and decides the diagnosis is, say, Fibromyalgia. This is a symptom complex, because it’s described in terms of what it does to the person, not in terms of specific pathogens or organs as the causative thingy. (I’m tired; thingy will do.)
On the other, you’ve got someone with a lot of pain, funky guts, sensory reactivity, and thyroid labs that are out of whack. Further examination of the thyroid discovers specific thyroid abnormalities which can be treated. With treatment, the symptoms subside or even disappear. The diagnosis is the disease of hypothyroidism, with a diagnostic end-point in an organ (as in this case) or pathogen.
CRPS/RSD, Fibromyalgia, and some other hideous conditions are symptom complexes. This is used by some as a reason not to “believe in” those conditions, because they aren’t “real.” This is intellectually dishonest, but it does no good to tell them that; assuming that a lack of diagnostic end-point equals lack of ill-health is blatantly absurd, but this is a reality we must contend with. It’s a drawback of having such a flexible language as English, where the same word can mean different things from one context to the next: in Plain English, disease and illness are interchangeable, but in Medical Jargon, they’re definitely different: disease means specific diagnostic end-point, illness tends to suggest a pathogen, and condition is the catch-all term — but is used more for things that really aren’t diseases or illnesses. Another example on a hot issue: in medicine, narcotic refers specifically to opioid analgesics; in law enforcement, it’s a MUCH wider term, encompassing any substance that legislators have decided is not legal. In courts, the meaning of the term has to change depending on who’s involved, which has to be weird.
No wonder there’s confusion around anything medical. What a setup, eh?
This brings us to the physician ethical structure this doc works with, and where it fits into this patient’s worldview. You can almost hear me purring comfortably from here.
He speaks of himself as a Palliative Care specialist. Most people think of Hospice when they hear palliative care, but it’s wider and simpler than that. It means this physician has chosen a field defined by the fact that his patients will probably never recover. That’s what palliative care means: keeping the patient as comfortable and functional as possible, for the rest of their (probably, but not necessarily, truncated) lives.
Yeah, pretty darn special. How many of you who see pain docs hear them use the term “palliative care” naturally and fluidly, without wincing and scuttling on? It’s a little thing that means a lot. It makes me realize I’m seeing a doctor who CAN be there for the long haul, if need be. Someone who would NOT throw me off with the very natural cringe of frustration and failure most docs feel when they can’t save you, or when you’re in the final downhill slide and they can’t face you dying. He can take that strain without failing me. That’s rare indeed.
Palliative care is the very heart of chronic pain care, and I couldn’t face that myself until today.
So now I just have to die before he retires…
I’d like to go over his approach more, but the fog is descending; it was an early morning and I’m paying for it as usual. I’ve got lots of notes, though. It’s great food for thought, so, with luck, I’ll come back to it.
Guess what? Everything’s up in the air, except me. But don’t worry, it’ll work out.
And that, folks, is how you know I’m back in the saddle. I’m not naturally a nervous person, but the years of system and systematic abuse on top of the fried central nervous system left me very nervous indeed. Every uncertainty was like a set of razor-wire boleadoras, ready to spin out and knock me over and tear me up.
Ghastly image, but very apt, as some of you know from your own experiences!
Of course, this slice of recovery is just well begun, not done. I’m simply able to reflect on possible futures without melting down reflexively. I’ll still have bad moments, bad days… and they will pass.
After all, there’s always an afterwards.
So, I’m 51 today, and I can honestly say I didn’t expect to see this day. You’d think my 50th would have been more reflective, but no, this one is.
I realized I’ve been blogging for 8 years, maybe 9. The first year and a half were justly lost in a Google flail, in the early part of the Pit Years. They were online journals, not blogs; the point of blogging is not to rip my skin off for reader amusement or “inspiration porn”, but to trace one path through the thickets we all have to travel, and trade ideas that help others find their own paths, or at least make them more bearable. (Tip of the hat to the friend of my youth who had the integrity to tell me she didn’t want to read my diary.) I’m more grateful for my readers, in all your kindness and struggles and brilliance and care, than words can ever say.
51 is starting with a bang, or rather continuing the same bangishness that has characterized this year so far.
I’ve found out I don’t currently have gall bladder disease, detectable spleen or pancreatic disease, or any form of cancer growing in my gut, just some “mild” gastritis. This leaves the question of what’s causing the rather extensive GI issues open for further inquiry. I’m going to see if I have mycotoxicity, which is looking very probable indeed, going on reactions and the fact that even the weirdest symptoms on that list are mine; going to find out if my body is able to respond well to a massage intensive (twice weekly for some months) or not; going to finish the final house repairs (as soon as the weather warms up long enough to let us not only recover from the cold but then get past the setting-up); and going to find out where we’ll go next, when the lovely house we’re living in sells. (My credit will age out of the worst black mark next year, so getting a house loan is simply a matter of time, with ongoing diligence. Not to mention knowing where to land.)
I’ve been reflecting on J’s unique mix of gentleness, brusqueness, flexibility, and intransigence, and realized how much he helps me in nearly every phase of his personality. (To misquote a capable yenta I knew, the holes in his head fit the bumps in mine, and vice versa.) I wondered how much further I could have come if he’d been there when I first got sick, or before I got sick. What great work I could have done.
Then I remembered, oh yeah, my ego was very much in the way — as that egotistical sentence pretty well indicates (what about your partner’s work, eh, Isy?) We would have loathed each other on sight, as both of us were cocky little jerks back then. It took losing everything that I thought defined “me” and “my life” to realize what really matters in a person — and in life.
I learned that love isn’t my driving force, it’s the anodyne that makes living bearable; curiosity is the characteristic that drove me out of the grave. I never would have guessed at the pure slingshot force of it.
So, though I don’t think I’ll see another 51 years, I can see that I might be wrong about that too. I’ll start heading that way now. I’ve got good company, outstanding friends (some of whom I’m related to), and interesting things to do. Onward.
May the future be worth the trouble of getting to it!
While I was mulling the constancy of nausea and yuckiness, looking for a reason more useful than “it’s winter”, I realized I had relentless cascades of post-nasal drip.
The stomach isn’t too fond of relentless cascades of post-nasal drip, because the glucoprotein complex generically called “mucus”, which we usually call “snot”, is not that easy to digest. It’s not really meant to be digested; it’s meant to do its job (picking up and trapping obnoxious particles or germs or what-have-you) and then get blown out. It’s not supposed to roll into the tummy in a never-ending stream.
I was reading up on GI issues (as one does) and stumbled across a piece which said something like, “Stay away from nuts and seeds entirely. The oil is rancid by the time it gets to you and that rancidity is poison to the systems of people who have leaky guts and sensitized systems. You can usually tell because the immune reaction affects your sinuses and causes lots of extra mucus.” If you’re curious, this article was about the GAPS diet and explained the whats and whys.
I threw my hands up in exasperation and disgust. I relied on nut and seed butters to start my day, because they cut the morning pain down to a quite bearable level and gave me a bit of protein that didn’t bring my stomach up in revolt. My mornings are tough enough and this info just pissed me off.
The next morning, I woke up noticing that I didn’t have post-nasal drip. Nice. Then I started on my morning breakfast of apple (malic acid helps the pain ease off too) and sunflower or almond butter (I forget which.)
Two bites…. then a relentless cascade of post-nasal drip.
My first thoughts were mostly expletives. Totally unprintable in a family-friendly blog.
I went off the rails a bit. I’ve been dealing with this disease complex for nigh on 15 years now and I have evolved a pretty limited (and not cheap) diet to manage it. Rather than thinking, “Oh great, a good clue as to what I can do to improve things!” I mentally roared, “WHAT THE BLEEDING HECK CAN I EAT ANYWAY????”
– Genetically-determined mild allergy to white beans. That means soy, chick peas (which wipes out hummus and much Indian food), most multi-bean soups and salads.
– Roaring neurologic gluten response, which in my case spills over into related molecules. This means: no wheat, barley, triticale, rye, oats — in fact, most grains; nor fresh milk, soft cheese, dairy ice cream; and eggs only in strict moderation.
– Hashimoto’s disease means my body is chewing up my thyroid. This means definitely no soy, but also, no broccoli, chard, kale, bok choy, cauliflower — no cabbage/brassicas of any kind — and that’s an awful lot of vegetables not to have as an option, including most winter veg. And yet, I need lots of vegetables and happen to like all of those. Even in small amounts, brassicas can squash thyroid response. It’s very sad.
– Candida/c.diff overgrowth, which means no sugars (not even unrefined honey or maple syrup, not even low-glycemic stuff like agave [which makes me cramp] or maltose), no rice, minimal fruit, no juice, no root starch (too high in sugars) or white starch of any kind (if I’m doing this diligently) which wipes out the potato family and remaining grains except amaranth (I can’t digest quinoa at all, so it’s not even an option.) Then there are the limitations that are less obvious, which means, no tea or coffee, no vinegar or cultured food (if I followed that parameter, I’d be unable to digest anything and my guts would be even worse), no artificial anything because they tend to be grown on yeast or malt slurries (which is fine because packaged foods tend to happen to other people, not me.)
– The constant immune-y fuss means I should probably be more diligent about the inflammatory culprits: tomatos, eggplant, potatos, peppers, the whole belladonna group. I LOVE those things. Also, no canned foods, because the trace amounts of preservative stuff are so neurotoxic that molecules matter to my body, and homemade canned stuff can still grow trace amounts of the fungusy-yeasty stuff that boots me back into candida territory.
– Now, no nuts or seeds. At all. Possibly no cooking oil. I was diligent about getting the freshest and checking best-by dates and inspecting the packaging, for the candida reason. Not enough any more. No nuts or seeds at all.
I think i’m down to squashes, lettuce, and incredibly expensive pastured/wild flesh foods. Oh, and grassfed (Kerrygold) butter. I can put that on the squash, I guess.
To be frank, I haven’t been very diligent about eliminating the root veg and I’ve had some broccoli and cauli lately, because it’s freaking winter and I’ve needed to eat something that’s available.
Since reading about the nuts/seeds thing, I totally fell off the rails. No gluten, because I’d rather die than go through all that again, but I’ve gone to town on sweets, rice, vinegar, ice cream, root veg, brassicas, belladonnas — everything but nuts and seeds.
Paying the price for it, too… as one does.
Two nights ago, I made myself a new bedtime meditation recording, designed to rebuild my own mental core. I’ve just about had it with trying to cope with the world (if you have one eye on US politics, you’ll understand that well enough, especially if you have friends and family who are losing care due to political brangling, losing property due to corporate gamesmanship, or losing their liberty due to being not-White); add to that some family crises of illness and a bereavement in the extended family, and… yeah.) I’ve reached March feeling absolutely shredded inside.
And then…. NUTS!
Lately and increasingly, my brain was really resisting the relaxation response training — which is very odd for me — and I was having nightmares and waking up 5 times a night. I thought that, if I backed off the calming exercises and instead re-integrated my core self, that would make more sense than trying to pretend everything’s all right for half an hour. I have no idea what that looks like for other people, but I have a pretty good idea what it looks like for me. So, I made a recording with a series of mental/imaginative exercises that boil down to my individualized psychological structural support.
The chaos and rage are abating, which is just as well, because I have a follow-up appointment with my pain specialist tomorrow. I’m calming myself down with this article before turning my fragile attention to encapsulating the physical fallout and revelations of this winter in a coherent patient update.
I get to tell him that I’m seeing the GI specialist later this week, and that I have tested marginally positive in a screening test for mold toxicity, so more blood tests are coming from my allergist. That would actually explain a lot, but I’m not sure where he stands on the subject. Mold toxicity, as a driver of illness, is one of those things where the physician’s belief-state has more bearing on care than the coherent, consistent, verifiable facts of the patient’s disease-state — in that respect, it’s like chronic fatigue, neurogenic pain, and most immune disorders. Familiar territory to many of us.
A few days ago, I apologized to J for being such a piece of work lately. I told him I’ve been ill and in more pain than usual. He said, with the kindest intentions, “Well, it’s hard to act right when you’re sick. You have to feel good.”
I said, “I never get to feel good. It’s just different levels of –” (waved my arm expressively.) “I usually do a pretty good job of managing myself anyway.” He agreed, bless him.
That first phrase, “I never get to feel good,” has been preying on my mind. But then, it’s winter. This will pass, and I’ll find it easier to put my focus where it belongs — on what I CAN do, CAN eat, CAN feel, that’s not so — (wave my arm expressively.)
Until then, I’ll keep breathing, keep making my appointments, keep tending my relationships as well as possible, keep up on my documentation, keep on keeping on. As one does.
Fortunately for all of us, the blogger at Elle and the Autognome has done a good job of laying out the basics and providing a starting-point for figuring out how to manage it in individual cases — because we’re all different, and we have to figure out what works in our particular bodies. So, rather than waiting for me to get it together on this topic, I’m going to punt to her.
* For the record, “central nervous system sensitization” is a collective term for the diseases characterized by CNS up-regulation of essential neural signals, notably pain but also a whole garbage-can of signaling misbehavior that goes with that. These diseases include CRPS, fibromyalgia, chronic fatigue, multiple sclerosis, lupus. chronic Lyme, and so on.
I switched to a new insurance company that might provide dental care. I haven’t tried them on that yet, but I will. It’s on the agenda for this year.
They want to pre-authorize my main neurological med, Savella. This is the main med that keeps my pain under some kind of control most of the time. If it weren’t for Savella, I’d simply not have survived the past 5 years.
Somehow, the pre-auth requirement has thrown my pain specialist into a tailspin. He wrote a prescription (although I had refills) and mailed it to me, then asked me to come in to see him (2-1/2 hour drive, involving an overnight stay to be there in the morning, which is when his office hours are) in order to discuss this, before he’ll initiate the pre-auth paperwork.
I could get testy about that. It would be so easy.
What I did was refer, by date, to the first visit, when we discussed that first for 10 minutes. I guess his notes from that got lost.
This is where I stay off the computer for a day while I calm down, remind myself that it would not actually be in his best interests to throw me into a bottomless lake of fire, and it would probably not be in my best interests to beat him to it and kill him first.
When you have a brutal pain disease, and you have a med that works enough to let you have a life beyond fighting for the next breath and waiting for the lack of food and crazy stress hormones to kill you, and there’s a situation that threatens to take it away, the consequences of losing the med mean that life will descend into a level of hellishness that most people can’t even imagine. Thus, those of us who’ve found a med that works for us, enough to let us eat and move and think and speak — we get pretty intense at the prospect of having that med taken away.
This is not addiction. It never was. It’s true and valid need. Big fat difference.
Funny how it’s easier to believe when we’re not talking about narcotics, isn’t it?
> If you’re serious about managing the narcotic disaster in this country, you have to let yourself remember that both addicts and painiacs NEED TO BE PATIENTS. They both need CARE. Neither they, nor their doctors, nor their communities, are served by being turned into CRIMINALS.
> REHAB WORKS, when properly funded and designed. THAT is how you get addicts off of contraband drugs.
> PAIN MEDS WORK, when appropriately prescribed and used. THAT is how you keep pain-patients functioning as well as their diseases permit.
> There is some logistical overlap at times, but ADDICTION AND PAIN TREATMENT ARE NOT THE SAME THING.
> However, BOTH NEED TO BE MANAGED BY CLINICIANS, NOT POLITICIANS!
Okay, stepping off that soapbox. Feel free to copy/paste the whole blockquote as much as you like.
So, anyway, I’ve calmed down about my doc’s curious response to doing a pre-auth on my longstanding pain med.
This is really important: from here on, I’m talking about MY ANXIETY, not MY PHYSICIAN’S REALITY. This is pretty normal and natural, and I’m leaving it in as a straightforward demonstration of what my brutally nervous brain can do to in the grip of PTSD from decades of questionable care. So, here’s the anxiety-driven, defense-at-any-cost response. (For more on the reality, check my future posts on his doctoring.)
I remembered he’s a geek. More than that — he’s an ubergeeknerdyguy who’s been a high-end specialist for a very long time.
Geeks are brilliant in their particular slice of the world, but can be surprisingly insecure and nervous about stepping outside it. Also, sudden changes can be surprisingly disorienting to them. (Those of us with ANS problems can sympathize.)
Things that might rattle an ubergeeknerdyguy about this and set off mental alarm bells:
My med was covered before, but now it needs pre-auth. Why? /dingdingding!/
My diagnosis was wrong, and it’s possible that my treatment will change, but we don’t yet have enough info to decide what’s next. Feels like change is coming upon us too soon! Not enough information! /dingdingding!/
Winter. Nobody over 35 is at their best here in the winter. /dingdingding!/
Obviously, to those of us who don’t inhabit the intellectual stratosphere, the first 2 issues are pretty straightforward (1: Cuz American insurance is funny like that. 2: Doesn’t matter — stay the course until there’s reason to change) and the 3rd is just life.
To an ubergeeknerdyguy who’s accustomed to controlling outcomes that nobody else can bear to deal with, it’s too much uncertainty to handle at long distance.
So, I’m getting my documentation ready:
I’ve got another copy of the letter from the ins. co. explaining they just want pre-auth.
I’ve got the current formulary showing that Savella is covered.
I’ve updated my supplement matrix showing the changes for the winter, which does 2 things: shows I’m really working on this “being functional” thing, and that I’m taking my chemistry seriously, not being passive and expecting him to do all the work.
In fact, the last point is so useful, I’m going to link my matrix here for anyone to crib from:
Now my secrets are out! 🙂 You can now see exactly which brands I use and what I find that each thing does for me. (And, if you count up the number of capsules and pills this makes, you also know why it can take me over half an hour to get my pills down!)
The first column shows changes (represented by a delta sign at the top). Docs LOVE being able to see at a glance what’s new and different.
Blank spaces are shaded out. This makes it obvious nothing’s intended to be there. (Common sense is not the same as intelligence, remember. Be as clear as possible.)
I put notes at the bottom putting it all in context.
My neuro supplements went down when I got my antioxidants dialed in to reflect the results of my blood tests. In other words, balancing my antioxidants really helped my brain!
My neuro supplements, along with everything else, have gone up to mitigate the brutal effects of cold and snowy winter.
This is not the time to make changes. Having said that, I’m not opposed to changes — just not now. (It’s good to explain, courteously and clearly, what your boundaries are around treatment.)
Detailing those changes tells the doc that I really do pay attention to what I’m taking in. I’m not a faddist; I’m diligent and determined to manage this as well as I can. Just from this one document alone, that’s reasonably obvious. Displaying this characteristic (or set of entwined characteristics) helps my doctors take me more seriously.
The real fun of this symptom complex: trying to keep others taking me seriously even when I realize I’m in such a panic my brain explodes. Woot!
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…
“Never give up. Never surrender.”
Leonidas of Sparta, Jael the wife of Heber, Alexander the Great, Queen Boudicca, Mary Magdalen, the Prophet Mohammed, Hildegaard of Bingen, Vlad the Impaler, Queen Isabel of Spain, Geronimo, Copernicus, Marie Curie, Winston Churchill, Aung Suun Kyi, Terry Pratchett, the 14th and Final Dalai Lama…
Rest and retreat, yes.
Pause for thought, please (unlike some of those listed above.)
Knowing when to acquire a sense of proportion, ideally (again, unlike some of those listed above.)
But… don’t give up. Don’t give your rightful self away.
It’s always been easy for me to be determined, but not easy to pick the right things to be determined about.
In my 20’s, I wanted to save the world.
In my 30’s, I was willing to work only on that part of it that wanted my saving.
In most of my 40’s, I was dying — sometimes by inches, sometimes by yards — and couldn’t quite save myself.
I’m 50; what a relief!
Given that trajectory, it’s no wonder that my priorities have shifted a little.
I figure that, as long as I have working pulse and respirations, I’ve got a job to do. (I suspect everyone does, but I could be wrong.) My particular job is to re-possess my physical self, and, given enough slack, help others to re-possess theirs.
Our bodies are not just machines, despite the inherent dis-inheritance proposed by Descartes (considering the body a separate entity from awareness), and the even more extreme model funded and fomented by a slightly misguided Hearst (who fell in love with interventionism, and drove the mechanical-problem-to-be-fixed model of medicine over the shifting-dysfunction-to-right-function model of medicine.)
Bodies are the media we experience life through, the means we have to respond with. Despite the relentlessly shallow concerns over appearance the media saturates our lives with, our fundamental experiences of life are not just seen. Life is an all-body experience.
Bodies are marvelously self-aware organisms on an enduring quest to care for and maintain themselves by communicating as effectively as possible within themselves, and responding as usefully as possible at every level — within the cells, between the cells, from cells to organs and back again — with the marvelously alert circuitry of the nervous system and the dazzlingly subtle chemical dance of the endocrine system drawing the whole show together.
That’s a bit more complex than just meat-sacks wrapped in hide.
I’ve been mulling the twined facts that my body is an amazingly tough, brilliantly adaptable organism, and at the same time, is an organism constantly under sieges both subtle and overwhelming. Yet it never stops trying to find a useful set of responses, it never stops signaling and listening.
It never gives up. It has never surrendered.
I admire that.
Just for grits and shins, here are a few other things that I mutter to myself over and over.
C’mon, you can do it.
Motion is lotion.
Use it or lose it.
Change or die.
That’s quite a set, when I look at it laid out like that.
Not all of them are cheerful. Sorry.
They’re all thoroughly grounded in my reality, though, and they all have had something to do with my getting this far. They are hammers and screwdrivers in my mental toolkit of radical presence, pushing back on neuroplasticity, and not settling for what this disease would leave me.
Naturally, I say these things to myself in tones of firm, loving parental authority, since it’s all about re-re-plasticizing my brain, and those are the tones it responds to.
FTR, I’m sincerely glad it responds at all. When I was in nursing school, they told us adult brains were fixed for life. I doubted that from the start, and events eventually caught up with my skepticism. Brain plasticity FTW!
Add to that a disease nobody understands without years of serious effort; unbelievable pain; weird deficits (sound volume? Vibration? Time in the shower? Crowds and excitement? How weird is it that that stuff can make us so much sicker, eh?); forgetfulness; loss of perceptions that tell us about social cues; distorted sense of touch; and above all the improbable wobbles, waxing-and-waning, and variations in every dimension… and we could have a recipe for disaster — and occasionally do.
I’ve lost a job, some hard-earned professional respect from my peers, an excellent friend in the making, and several medium-close friends whose presence I still miss, due purely to the effects of the disease.
Kinda sucks, eh?
And I’m definitely one of the lucky ones!
Over the years, I’ve developed a handful of personal guidelines. Key to every one of them is this: I’d rather be effective than right.
What does that have to do with taking care of relationships? (Yeah, kind of a trick question. I can hear many of you shout, “Everything, duh!”)
Life is not fair, this kind of illness is not fair, and there is nothing in this world that can make it fair. Being sick like this is just fundamentally wrong, a vile distortion of life and of fairness — but that doesn’t mean I no longer have a life or that I lose my own sense of fairness.
That, folks, is where the real power of “living anyway” comes in — of doing the imp-possible with character and flair. Life is not fair, but I can still be generous (when it’s reasonable), and to heck with the unfairness anyway. This disease is vile, but I can still be pleasant (most of the time), and to heck with the vileness anyway. Imp-possible WIN!
So, here is my list of personal guidelines for tending the relationships that matter:
1. Nobody shall be worse off for helping me.
Corollary: Be truly grateful, without groveling, when they do.
Reminder: This trumps short-term survival. If I let someone be worse off for helping me, things get very bad very quickly. Don’t go there, ever again.
2. My problems are my own.
Corollary: Help is precious.
Reminder: Treat those who give it accordingly.
3. No, normal people don’t understand.
Corollary: Nor should they!
Reminder: Bless those who try; they are gold.
4. It’s hard to reach out and stay in touch. Do it anyway.
Corollary: The payoff is worth many times the effort, over time.
Reminder: I feel better after hanging up than I did when I was dialing, ~90% of the time.
5. People say more than they can do, not less.
Corollary 1: Don’t believe them when they sound generous.
Corollary 2: Believe them when they state their limits.
Reminder: Be grateful for the more painful information, and courteous about the generous lies. This has led to more subsequent real help (mostly from the curmudgeons) than anything other than #1.
6. I could be wrong.
Corollary: I might not be.
Reminder: Is that what matters?
7. Every New Year, think over two things for the coming year, because these are the only resolutions that matter: i. What do I need to work on to take better care of myself? ii. What do I need to work on to take better care of my relationships?
Corollary: It’s okay to make the same resolution as many times as necessary.
Reminder: Celebrate having made another year!
I’m not kidding. I really do all that. It’s a constant practice, of course. I have to constantly check and recheck and remind myself of each thing on the list, especially if I’ve been slipping. The point of a practice, of course, is that it’s a work in progress — like life.
It takes a lot of humility to abide by these guidelines, and, believe me, humility doesn’t come naturally — I’m genetically wired for its opposite. (You should meet my folks: gifted, glorious, hilarious, adorable, and unselfconsciously smug, every one of them!)
Having said that, the value of what comes from the humility sure is worth the effort, even though it’s overwhelmingly difficult at times.
I intended to go into these guidelines in more detail (explanations, expansions, maybe a few links to science articles to back up an assertion or three), but I find I’m running out of steam and don’t want to leave this theme — again. I’ve got several drafts with a similar title, and couldn’t hammer any of them into shape for a post.
The brutal challenges we have with maintaining relationships really need to be addressed (however brief this is, it’s still something), so you might as well dig into this and comment on what you think about this, what guidelines you’ve come up with for yourself, why you think these might be valuable or not. I love it when you share your thoughts and experiences here.
There are two things I wanted to discuss, which I’ll just drop here and leave for further comments and conversation.
Taking responsibility is not the same as taking blame. This is a very powerful idea. (It’s okay to say, “I’m taking responsibility. I’m not interested in blame.” This shifts focus for everyone involved.) This is particularly important in relation to #1, 4, and 6.
Everybody has their limits. My relationships only work and grow when I respect others’ limits, whether or not they can respect mine. (I can’t do anything about them, but I can do something about me. Moreover, when I give them this slack, people tend to move through their mess and become more considerate in time.) Particularly relevant for #1, 2, 3, and 5.
There’s always an afterwards. I developed these guidelines in light of what tended to leave the most useful “afterwards”, because I intend to be around and continuing to beat the odds for a long time.
This is from one of my Isypedia-type replies to someone with a dreadful case of clostridium difficile (commonly known as c.diff) who had been told to use antibacterial soap to wash.
NB: This is not an opportunity to argue about antibacterial soap, but a sharing of experience from someone who was on the front lines of the “soap revolution” over a quarter of a century ago.
A word from an old nurse on this question, one with leaky gut, bouts of multi-system candidiasis, and assorted other gut issues, as well as c. diff …
About c. diff
C. diff is common in hospitals and is an opportunistic infection. (Doctors carry it from bed to bed on their white coats, and few of them even wash the darn things more than once a month. This is disgusting.) Once it’s in you, it hibernates, and comes out in flares periodically, usually when you’re stressed out or when your immune system is down. There’s no question of curing it, but of suppressing it and managing outbreaks.
Healthy gut flora are the first, best line of defense. They simply crowd it out and leave no room for it to grow. A normally healthy person might do fine with eating yogurt, but those of us with chronic or profound illnesses usually can’t meet their needs this way. We need the big guns because our gut flora are likely to be very weak,very few, or both.
There are some great probiotics out there. Good brands are pretty numerous. They include Jarrow, Garden of Life/RAW Vitamin Code (my personal favorite), and Ortho Molecular Products. I use the RAW Vitamin Code 5-day Intensive product for 2 weeks at a time, when I need to reboot my gut. Recently, I had candidiasis and c.diff flare up simultaneously, so I’m using the Ortho Molecular Pro Biotic 225 (tastes weird, so I mix with juice to cut the funk) for 2 weeks and then I’ll do a round of the RAW Intensive (which has a much broader spectrum of organisms, something my body really needs for maintenance — the longer a person has CRPS, the fewer gut species that person has, oddly enough) for 10 days or so.
I get these products on Amazon or at Vitacost.com, where they can usually be found at near-wholesale prices.
About the social and practical aspects of soap
Men have trouble with soap. (I’ve had to teach males of every age to wash their hands for dressing changes or eye care, so yes, I can confirm it absolutely.)
It doesn’t mean they aren’t capable of using it well, any more than women are incapable of lifting weights; they just have to put a little more effort into it, but almost all of them are capable of becoming very capable.
No, really, it’s true. They can. They just have to put a bit more work into it.
Where possible, many men would much rather have a toxin or tool to do the cleaning job for them — hence sonic cleaners and autoclaves for equipment, and benzalkonium chloride or alcohol cleaners for the skin of male responders and providers.
These aren’t as good as soap and water. Notably, alcohol cleaners, which are widely used in hospitals and do kill many germs, don’t even touch c.diff — a peculiarly hospital-based pathogen.
These products are considered good enough, and are certainly a great deal better than nothing at all.
If men (at least, US men) have to use soap, though, it seems easier for them to think about if it’s a tool-ish sort of soap — Gojo (by every mechanic’s sink, next to a fossilized bar), Lava soap (which feels like dirt and has powdered rocks in it), or antibacterial soap (which sounds medical, and therefore like a specialized tool.)
That’s a lot of needless expense. Also, and more importantly for the purposes of this blog, it’s becoming clearer that there are toxicity issues with antibacterial soaps which affect men as much as women and children.
How to clean your skin so well at home, only a surgical scrub could be better
Whatever body part you’re washing, whether it’s hands or what the medical profession delicately refers to as the “peri area” (Latinists, look away from that) and what most Americans call “the crotch”, there is a very simple way to get as clean as you can, short of a surgical prep.
Here’s the magic:
20 seconds by the clock(you’d be amazed how long that really is) with regular hand or body soap,
On your hands, from nails to wrist; Between your legs, from front to back; In both cases, right through all the crevices and any wobbly bits,
Then rinsing well afterwards,
This process will get you as clean as, or cleaner than, any amount of antibacterial soap, without the side effects. That’s what the independent science says, over and over, plain and simple.
The problem is, of course, that most people (especially men) have trouble spending that much time with soap and water.
Personally, I do a quick pass with soap to get the worst of the stinkies off, and then do a second and sometimes a third pass, front to back. I do this every time I shower, and when I’m too sick to shower but can still stand up at the sink to wash. It adds up to 20 seconds, usually closer to 30. My nurse’s nose finds my sick-body smells distressing, so I like to clean them off completely.
When I’m really not up to washing well for at least 5 days out of the week, that’s when the troubles start. Usually, diet and hygiene keeps my gut content, but I recently got a virus and then a long pain-flare and that put me down for over a week of very little proper washing — plus, of course, diminished immunity. That’s probably what led to the multiple gut flares. (They’re much better now, thank you.)
Making the right choice for you
Bottom line is this… IF you can trust yourself to really clean yourself properly, which means 20 seconds of soap (in 1, 2, or 3 increments at a time, as long as it’s 20 seconds total), then ordinary, nontoxic soap is just fine.
If you can’t trust yourself to do that, then yes, you need the extra killing effect that the antibiotic soap can have on pathogens, and will have to risk the consequences.
For triclosan and its relatives, this includes muscle wasting, dose-dependent (the more you use it, the worse it gets); for most others, it includes moodiness, suppressed immunity, more skin issues, and all the stuff that goes with endocrine disruption — possible neurological issues like pins-&-needles and faulty neuro, endocrine, and hormonal responses. (You have to watch the medical science closely to find some of those things, because they rarely make it into the mainstream press. Bad for business.)
And that, ladies and germymen, is the lowdown on how to choose soap.
I’m going through one of those periods where I’m just tired of my body hurting.
This is one of those offhand remarks that makes fellow painiacs nod understandingly, offer a kind look or emoji, and move on, but it makes normal (-ish) people with good social skills cringe and stops the conversation in its tracks.
I don’t want to make nice people cringe, and I don’t want to kill the conversation. I was recently reminded how hard it can be to avoid that while answering “how are you/what have you been doing” with any honesty. In fact, I find myself talking about most of the past 20 years in terms of not getting dead.
I think that’s a hoot, because it’s so improbable and so much against my initial setup and programming. (I have a truly dreadful hangman’s humor.)
Needless to say, most people think it just sounds grim.
My setup and programming
I’m the offspring of a diplomat and a working artist, well-traveled and extremely well-educated, Seven Sisters undergrad… until I went off-road and became something totally bourgeois and practical (a registered nurse) and, when my immune system conked out for no apparent reason, went on to become something nouveau and nerdy (a writer documenting high-end programming software.)
It was a sweet setup: good brain, strong body, great start to a useful life, good plan B when plan A failed.
Eventually, this promising start led (via surgical complications, neurological disruption, extensive worker’s comp and SSDI abuses, failures of care and denials of treatment, tediously protracted near-death experiences — a term I’m longing to refine — and years so close to utter destitution I refused to look at dumpsters because I knew I was not far from winding up in 2 or 3 of them simultaneously, like the other invisibly disabled woman of my age, build, and coloring who landed on the streets of Oakland) to my utter destruction as a professional entity.
That was definitely not in any of the scripts my life was supposed to follow!
My childhood friends now have their own businesses, pocket palaces, successful careers in the arts (most), policy/diplomacy/public service (some), and STEM (a few), and in raising children with little concern for whether they can feed them. I’m deeply relieved and happy for them, while realizing that my own life-path got so completely hijacked I have no idea what I’d be doing if it hadn’t been for this.
I bet I’d be complaining more, but I’d be doing more too. I wouldn’t be hurting this much for decades, if ever, and even then, only if I had terminal cancer.
Which brings us to a key point: to discriminate against the disabled is to discriminate against your future self. We’re all getting older; with more lifespan come more proofs of mortality, which include reductions of function, stamina, mobility, and even memory and reasoning.
These, folks, are disabilities, and either they will happen to you or you will be a premature death statistic. There’s no third option.
This is why, when you discriminate against the disabled, you discriminate against your future self — and all those you love.
I wish legislators had the humility to remember that. Perhaps you’ll remind them… Find yours at www.usa.gov.
Where was I? Oh yes.
How do I talk about the last 20 years, especially the last 15, with a person who hasn’t spent an appreciable part of life dancing with Death and occasionally taking the lead?
How can I convey how incredibly marvelous it is to have a minimum of 2 functional hours — consecutive hours! That’s thrilling! — nearly every single day? And yet, I used to work 10 or 12 hours at at time for preference because I loved immersing myself in the work.
In comparison to that, isn’t 2 hours pathetic? Especially because I did very demanding work, and 2 hours of noodling around in the yard or walking around downtown really doesn’t compare.
It makes me realize how long it’s been since I even thought about the razor-wire-bound memories of “how I used to be” and “what I used to do.”
I compare only as far back to 2008-2012, the pit of the pit, the nadir of my existence.
Compared to that, I’m fantastic! Being fantastic is a great thought!
Being at maybe 10% of my youthful vigor is actually amazing, because during that time, I went from being so close to dead it took 25 to 30 minutes to drag myself, fist over fist, all 6 feet from my bed to the other end of the settee, to feed the cat in the morning. I think that level of function (or nonfunction) is a percentage of my youthful vigor that’s several digits to the right of the decimal. It felt like a negative number, that’s all I can say for sure.
There’s nothing I can do about the past, only the future. That’s not pathetic, it’s just life.
Actually, I feel that way about most of this chronic-illness gig. It’s not pathetic, it’s just life.
The power of “use it or lose it” as a tool under your control
The trick to living with chronic illness is twofold:
Figure out what it takes to manage your illness without letting it take up all your focus. It does not belong in center stage, or not often anyway. Life belongs in center stage. Figure out how to make it so.
Figure out how to have a routine, some sort of rational approach to every day. It’s all too easy to lie back and let the world go by. Speaking as an old nurse, I know the immovable truth of the old adage, “use it or lose it.” Having a routine stabilizes the body’s coping mechanisms; knowing what to expect soothes the central nervous system and simplifies healing. So, make a routine; decide what happens next. Make yourself do things, alternating activity and rest. Use your body, use your mind, rest, then use different aspects of your body, different aspects of your mind, rest, and so on.
These two strategies allow me to make more room, more time, and have more attention, for joy.
Joy is not a luxury; it’s essential to proper function.
The gut, brain, immunity, everything, are worse off when there is no room for joy. Whether I can appreciate my partner, the sunshine, a lolcat, whatever, I grab each opportunity for a shot of delight. I call those bursts of joy “brain juice”, because they boost useful neurotransmitter patterns and, cumulatively, reduce my pain and improve my function.
Bit by bit, even as age creeps up and new issues arise, I find myself better and better able to make use of what I still have. In fact, over the last year, with safety and sanity finally framing my existence, I’ve regained an amazing amount of function. I’m so pleased! (Oo! More brain juice!)
I still don’t know how to explain this to a normally healthy person without sounding like something from another realm of existence.
Different is probably fine
Perhaps I am from another realm of existence.
I’m certainly from another realm of experience; longstanding profound illness is special like that.
Perhaps I simply need to get over this idea that, just because I’m back home or just because I’m talking to someone who knew me when I was an arrogant young jerk and saw beyond that to someone worth liking, I should fit in with them.
Perhaps I should have more faith in myself to be interesting and likeable enough to shine through even the CRPS. I clearly shone through the old arrogance and jerkiness, somehow.
I’m far less confident, eloquent (in person), and humorous — at least, less intentionally humorous — than I was in my 20s or 30s, but I’m a whole lot more confident, eloquent, and (occasionally intentionally) humorous than I was a few years ago.
So, I need to remember to keep my focus relevant, and not think too far back.
Emotional boundaries: My pain shouldn’t be your pain
There’s a trick to disclosing without wounding, even when what you’re disclosing is tremendously difficult. Good boundaries are key.
You may have noticed… people tend to pull away from pain. It’s an ancient reaction that happens in the most primitive parts of our central nervous systems. That means, when we’re too raw about our pain, others may pull away from us because that primitive response combines with their emotions around pain, and our pain makes them hurt emotionally.
I remember how I used to open with the idea that my pain is my pain and others don’t need to imagine it or take it on.
This approach of “it’s not your pain, so let it go” frees many people up to re-engage from a rational distance which works for both of us. It’s important to give others the distance they need, because then they don’t feel a need to pull back further to protect themselves, and can stay in contact. They don’t feel driven to pull away from all that pain.
Each of us, well or ill, has to carry our own load, and really isn’t equipped to take on others’ loads as well. I try to remember that and respect the loads of others. It usually works out well.
Come to think of it, it’s essential to relationship maintenance.
Taking it on vs. bearing witness
When I was a nurse, I dealt with harrowing human experiences all the time. I could handle it with real care, and go back next day and do it all again, because I was clear that my load was my load and their load was their load, and the most healing and empowering thing to do for another person is to bear witness to their struggle without trying to take over. The one with the struggle is the one best qualified to find their best solutions; having that implicit faith in them, I found, is tremendously powerful.
For those of us in dreadful situations, we don’t get to choose the reaction others have to our struggles. All we can do is try to back-lead, essentially, guiding them tactfully to a more comfortable position.
Allowing well-intended people to bear witness in a safe way is a natural outlet for the sympathy and compassion evoked in decent people. Letting them get sucked into the awfulness doesn’t help anyone.
Put that way, it’s a lot more clear to me. It’s another form of radical presence/radical acceptance, a mental tool which boils down to, “Things may suck right now, but here I am, it is what it is, and this will pass.” Try it — you’ll be amazed how much mental energy it frees up.
The approach for discussing my illness with others may go more like, “It sucked then and it sucks now, but the worst suckage is behind me, it gave me great opportunities for growth and I took ’em. At this point, I’m better at looking ahead than looking behind, and hey, I’ve got interesting projects going…”
So, first I should clarify the needful boundary between my personal load and the rest of the world, and then I can discuss all this with some detachment from the gluey-ness of remembered distress, unbelievable losses, and intransigent pain, and best of all I can point the conversation towards something much more positive.
I’m still not sure exactly how to do that, but I’ll practice.
I’m definitely better at looking ahead!
Well, I don’t know about you, but I feel a lot better about this already. I’m grateful for your company as I figure out my rubric for yet another tricky twist of the Rubik’s cube of life.