. . .  so I decided to write a post in response to a post by Michelle at Living With Bob. What would I write to a person newly diagnosed with dysautonomia?

First I’d say, oh hey HI!  Then I’d say I’m so sorry you have to go through this, especially the frustration of dealing with a medical establishment that doesn’t know what to do with you.  But if it makes you feel any better, there are a LOT of people with nerve disorders on the internet, mostly ‘cuz there’s nowhere else to go.

Not that we all call it Dysautonomia, because many of us never heard of that particular term. Only one doctor, an endocrinologist, has used the word with me, right before he said “but that’s not my specialty” and pushed me out of his office.

Sometimes I call myself Randomly Autoimmune, because at least most people understand that. Whatever it is though, you and I have got it, “it” being a syndrome of annoying, frustrating, painful and sometimes life-threatening nerve symptoms that go by many names because there are so many ways the disorder can express itself within the body.

Fainting Goats . . . although they don’t really faint.

Sometimes I pass out.  My mother and sister have the same thing; my sister is on a pacemaker now. Vasovagal syncope appears to run in some families.  At least my mother and I are no longer misdiagnosed as having seizure disorders, because it’s a bitch to get insurance and obtain a drivers lisense when the world thinks you’re epileptic.

Then there are the other symptoms. Sometimes I can’t stay dehydrated no matter how hard I try to drink plenty of water.  I also eat plenty of salt, but there are days when the fainting and peeing are so bad, the only thing I can do is head to the ER with chest pains so that I can get an IV hookup.  It’s expensive, but it is what it is, and no, there is not other option for me at this particular point in time:  All my diagnostics have come out normal.    I’m “fine.” There is nothing wrong with me. Officially.

Our symptoms, our “episodes,” may SEEM random, but there is a trigger, I’m sure of it.  We just don’t know what it is yet.  I’m still experimenting, and keeping an eye out on the horizon and my ear to the ground for a cure. In the mean time, the following approaches, achieved by trial and error over a decade, have made the difference between my having a public life, and being stuck in bed. As always, Your Mileage May/WILL Vary (YMWV), but if I can save you 10 years of trial and error, perhaps my Lost Decade will have been worth the while.

But do my self-treatment strategies WORK?

It’s hard to say, when n=1.  My experimentation is not scientific.  However, I can say this for sure:  Once life brought me to #7 I had things pretty well under control, and I was feeling pretty good. Last August 2012, I decided to take a break from all of my restrictions, supplements and coping mechanisms, and “see what happened.”  I ate what I wanted. I quit taking all my dietary supplements.  And I ended up in the emergency room three times in four months! 

I had just one ambulance ride, fortunately.  Then my eyebrows fell out.

By December I resolved to have just about every test on the planet to figure out what was wrong with me.  It was all very, very expensive.  I probably could have saved myself a lot of grief, and a ton of money, had I just stuck with the program.  In the four months since I’ve been vigilant with my diet and hormones, I’ve had a few wobbly mornings, but nothing serious. I have not passed out since November 2012.

And with THAT, here it is!  Anything in RED text is a link to another story.

1.  Some of this WILL be funny . . . someday.

My great grandmother had a crocheted poodle toilet paper cover.  I’ve been looking for one ever since.

Take Irritable Bowel Syndrome, for instance:  It’s basically neuropathy of the gut. Even with a blog I can’t post anything about it because it’s too embarrassing.  But now that a few years have passed I’ve realized some of my public episodes were HILARIOUS! I know I need to write them down, because they are stand-up-comedy material.  I figure someday, while drinking wine with friends, or rocking at the old folks’ home,  we’re going to get into a Top This! competition, and I am TOTALLY GOING TO WIN.

2. (2004) Gluten Free Living = WORTH IT

Gut Instinct 

(the above is a link to an old blog post)

Let me be clear on this:  I do not have coeliac disease. I have been tested.  I had a blood test and a biopsy, both negative. Today it seems everyone is trying* gluten-free because it’s sort of a fad, but ten years ago you couldn’t even find a loaf of bread that didn’t taste like sawdust.

But was 2004 and my hair was falling out.  I’d just suffered a miscarriage and the loss of a committed relationship and was feeling pretty devastated.   I was willing to commit to a gluten free diet to try to grow my hair back.

It didn’t work.  However, within about three weeks of giving up baked goods my osteo-arthritis in my neck cleared up completely.  I no longer had muscle spasms or joint pain.  I was able to quit my medications. My brain fog lifted considerably.

Relieved, and convinced I had coeliac disease, I sent a stool sample to Enterolab.  At the time I considered myself a progressive liberal, and was suffering from Bush Derangement Syndrome, so I felt a certain sort of satisfaction about mailing a bunch of steaming crap to Texas.  Anyway, the lab report came back with a diagnosis of gluten sensitivity:  Their cutoff score for celiac disease was 300 and mine was 298.  Close enough, you think?  The lab report also told me I had the gene that predisposes me to autoimmune disease, such as diabetes and arthritis so I needed to be extra careful.

I decided that it does not matter that I do not have celiac disease, because I get horrible nerve pain, diarrhea, muscle spasms, brain fog and joint pain after a few weeks of eating conventional baked goods.  When I stop eating them my symptoms eventually clear up, again, usually within two or three weeks. (UPDATE:  It might be the phytic acid in wheat that’s causing my problems).

So there you have it.  Being gluten free is worth the inconvenience, because I had not given up on gluten I might be dignosed with fibromyalgia today.

I can honestly say that despite all my auto-immune complaints, I DON’T get migraines or joint pain anymore. Knock on wood.

The nerve pain and brain fog, however, made their ugly reappearance during my late 30’s, with perimenopause. More on that in a moment.  In the mean time here are a few good links:

Glutenology Twitter feed

How Gluten can disrupt your hormones (YouTube video)

3. (2005) You can still be FABULOUS . . . it just takes a sense of humor, and the occasional good day.

I’d lose the cigarrette, though.

Dysautonomia will make you feel like crap some days, but okay on other days. Then there are days when you feel as though you beat the rap, found the cure, only to be flatted a day later by another episode. It’s times like these where you take your pleasures whenever and wherever you can, such as a bubble bath, for instance, supervised if necessary.  Some doctors might tell you to avoid alchohol but you know what?  It doesn’t matter. Have a glass of wine if you want.  If you’re stuck at home and it’s a beautiful day, don’t be sick indoors; be sick outdoors!  Bring sunglasses and a blanket, and just bask in the sun or under a tree if you’re sensitive.

I could devote my whole blog to being fabulous while struggling with a chronic illness. For now though I’ll provide just one example of how I dealt with this one thing: Alopecia (link to national website) 

This is the wig I’m wearing now

Alopecia will probably never happen to you.  However, if you have autoimmune problems and you are genetically susceptible, it’s possible your hair follicles may lose their immune privilege someday. It’s okay if your hair falls out.  Really.  It’s OKAY. I can even laugh about it now.  I even think I look better now than I did ten years ago, because now I have FABULOUS HAIR! That nobody can tell is totally fake. Underneath, I’m bald, because in 2005 I shaved what was left of my not-so-fabulous hair and moved on.

Shaving my head was NOT “giving up.”  On the contrary, it was my way of saying “Hair, you are being an asshole and I refuse to deal with you until you learn to behave.”   It might grow back. Or, maybe not. It doesn’t really matter.

3.  (2005-2012) Get Cultured

Coconut kefir smoothies . . . mmmmm.

The 411 on IBS and Kefir (from National Kefir Association)

Because my nerve symptoms include tummy trouble (which I’ve had since age 13) I usually avoid cow’s milk, unless it’s cultured, or unless I’m traveling or have company or . . . or it’s CHEESE . . .  well sometime it’s just hard to avoid. Then I can’t go to the bathroom, which is also hard. Then my body tries to reject it all at once and, well, that’s when things get REALLY difficult.

Anyway, sheep and goat’s milk seems to bother me less than cow’s milk does, but that may just be because sheep and goat milk cheeses are expensive, so I don’t get to eat much of them.  Coconut milk makes a decent substitute in recipes, and I eat a lot of leafy greens to get my calcium.

One kind of dairy that really does seem to help me, however, is kefir. Yogurt not so much.  I think it’s because kefir has bifidobacteria and most commercial yogurts do not.  More on probiotics in a minute.

4. (2006, 2010) For the Ladies: Watch your monthly cycle, but think twice before trying The Pill

Vida Man Infra

(the above is a link to another story)

Bottom line here is hormonal flucturations can coincide with the worsening of your dysautonomia symptoms. I wouldn’t be surprised to discover that most women with dysautonomia also have trouble with their hormones.  Both the nervous and endocrine systems are controlled by the hypothalamus!

Birth control pills, however, are probably not the answer.  They might ease symptoms at first.  However over time, at least in my experience it takes about 6 months, they only cause more trouble. I blame the synthetic progestins that the body doesn’t quite know what to do with.  The body needs real progesterone, but if you’re on the pill you’re not ovulating so you’re not getting it, and that’s a big problem.  Estrogen, progesterone and thyroid are meant to play nice together, but when estrogen is unopposed by progesterone it interferes with proper thyroid function, and that can make your dysautonomia symptoms that much worse. More on that in a minute.

5. (2007)  PLEASE don’t be insulted if a doctor suggests a brain pill.

Your dysautonomia is real.  You are not crazy. However, dysautonomia can make you feel that way.  Nerve pain, bewilderment, and lack of social and medical support can also make you feel anxious and depressed, and even cause panic attacks. Panic attacks are no joke: You feel as though you are dying.  Any doctor who shrugs them off is an asshole.

But the doctor who suggested anti-anxiety meds?  He or she is not an asshole.  He or she is really trying to help you, and s/he may be on to something. Let me explain.

Low dose antidepressants MAY help you, and not just your mood!  Some anti-depressants are being used “off label” to treat nerve pain, especially those in the “tricyclic” class and drugs that act on serotonin, GABA and dopamine.   This is because, surprisingly, the body processes physical pain and emotional pain in the same manner. Pain is pain!

I used to think all brain meds needed to pass the blood/brain barrier to work, so I was amazed lately to discover how many brain neurotransmitter receptors live in the gut.  However, antidepressants are side effects and they don’t work for everyone.  They saved my life many years ago when I needed them, but I don’t take them anymore.

6. (2010) Learn the Signs.


 In February of 2010 my blood platelets lost their immune privelege and I almost died.  I wrote about in the above post (link to Red Dawn).

What’s the final takeaway, given it probably will never happen to you? When you are ill, sometimes you don’t have the cognitive wherewithal to do critical self-care.  You need to rely on objective measures, and sometimes other people.

If you live with another person, defer to his or her judgment when it comes to whether or not to call the doctor or head to the emergency room.  On a good day, come to some kind of an accord, i.e., “When X happens we’ll do Y.”  It reduces the drama, which nobody needs.

If you live alone, you have a challenge, because a really bad day can sneak up on you.  SO: On a good day, come up with your objective criteria, i.e., “When X happens I’ll do Y and if that doesn’t work I’ll do Z.” When I lived alone, I left notes around the house to myself, just in case.  My favorite was a piece of paper I had taped to my bathroom mirror:  It said BREATHE. Beneath that note was another piece of paper that said “Laugh at that, because it really is very funny.”  My body actually “forgets” to breath sometimes, hahah!

7. (2011) Your hormones might need a boost to get back in balance.

In My Shoes

 It’s a chicken or egg thing: Can unbalanced hormones give a person dysautonomia?   Or can dysautonomia give a person unbalanced hormones? I suspect the two problems feed off each other.  I’ve discovered bio-identical hormone replacement  (BHRT) in very small doses, done in such a way as to mimic a normal menstrual cycle,  has relieved ALL – all! – wow! – all of my annoying hormonal symptoms, and improved my dysautonomia symptoms.  It’s nothing short of a miracle.

These are the three hormones I supplement these days:  Estradiol, progesterone, and thyroid.   Since my thyroid levels are technically “normal” I’m using thyroid supplements from my local health food store. The estrogen and progesterone I get from my gynecologist.

I took DHEA for awhile but the reaction I got (acne) was all I needed to know that I did not really need it.

If you are in your 20’s or 30’s, you are NOT “too young” for progesterone and/or thyroid meds, especially if you’ve been ill.  When women are ill or under stress, ovulation can be disrupted, which can cause hormone imbalances. Had I discovered BHRT in my 30’s instead of my mid-40’s my life would have been much more pleasant. It’s worth finding a naturopath willing to work with you to get the hormone support that you need.

8.  (REAL) Progesterone is neuro-protective.

Again, I believe bio-identical Hormone replacement therapy (BHRT) has dramatically improved my symptoms.  However, HRT is controversial and very political. I agree that conventional HRT can be very bad news for a lot of women.  The estrogen doses are too high and the progestins are of limited use to the body. Unfortunately there are powerful pharmaceutical industry interests at stake when it comes to medical consensus on how to manage menopause and its symptoms. It’s confusing enough having to wade through it all without having to deal with the additional confusion of the definition of “bio-identical.” It’s worth doing the homework, however, even if you’re in your 20’s or 30’s, because bio-identical progesterone may help some of your dysautonomia symptoms:

NY Times article:  Progesterone May Play a Major Role in the Prevention of Nerve Diseases

Scientific article:  Progesterone: Therapeutic Opportunities for Neuroprotection and Meylin Repair

Unfortunately, conventional medical doctors won’t offer HRT as an option until a blood test shows you in near-menopause.  If you’re in your thirties or even your forties, your typical gynecologist will offer you birth control pills instead, which are no good because they contain “progestins” or “progestogens,” which are not real progesterone. You need the real deal.

Finally, some balance

Even after a blood test FINALLY showed me as pre-menopausal, I had to pitch a fuss and switch doctors to get bioidentical progesterone.  I’m so glad that I did, so even if you are still in your childbearing years I highly recommend finding a doctor who understands the benefits of natural, bio-identical progesterone.  These doctors have books that may help:

Dr. Sarah Gottfried’s blog,  AKA the Organic Gynecologist.  She’s the author of  The Hormone Cure

Uzzi Reiss’s website.  He’s the author of Natural Hormone Balance for Women

The Late Dr. John Lee’s classic: What Your Doctor May Not Tell You About Pre-Menopause

9.  Don’t get hung up on labels.

Now that you have a dignosis and have found other bloggers, don’t be too attached to labels or seek support only from our small-but-growing dysautonomia community:  You may someday encounter a kindred spirit with fibromyalgia, or celiac disease, or orthostatic intolerance (POTS), or alopecia areata, or diabetes, or irritable bowel syndrome. Every symptom has its own internet forum, but the bottom line is that we all have IT, some kind of an autoimmune nerve disorder that SUCKS.  We all “get” you.  We’ve been from doctor to doctor. We’ve all felt embarrassed, frightened, insulted, misdiagnosed, and written off.  Over time and through trial and error we’ve found ways to cope, and we can learn from each other.

10. Gaba Daba DOO!  On finding gold at the Vitamin Shoppe.


For nerve management at PMS-time, today I prefer herbal remedies like pharmaceutical grade GABA. (by the way that link is to the only brand I trust – others have not worked for me).  

I also find that  Liquid magnesium/calcium supplements (more absorbable than pills) and magnesium oil (rubbed on my legs) also have a noticeable effect on my nervous system.

When my scalp and wrists give me nerve pain, I use a homeopathic capcaicin (red pepper) cream.  It’s very effective.

You can find more in this Psychology Today article:  Eliminate Nerve Pain Naturally

11.  Eat like a diabetic, even if you’re not.

There is SO much to learn about blood sugar and auto-immune/nerve disorders that I don’t even know when to begin.  I don’t have diabetes, but I have noticed my eyesight gets worse when my blood levels are (presumably) high.  I also pee more when I eat sugar, which is a big problem for me since I have a hard enough time remaining hydrated.

I’ve also noticed how my dysautonomia symptoms SEEM too improve when I keep my blood sugar steady.  I say “seem” because who knows?  I may be rudely jerked out of my assumption someday.  But for now I’m paying close attention to my blood sugar levels:  Not to high, not too low, but just right, with the appropriate mixes of proteins, fats and carbohydrates. My kidneys, and probably my spleen too, have been thanking me.

12. Eat your water!

If you have trouble remaining hydrated, and pee like you’re on speed, stop with the glasses of water already.  It’s clear that drinking those “eight glasses per day” doesn’t work for us.

Take this tip from Dr. Murad’s The Water Secret and start drinking your food and eating your water.  Once I started living on soup and smoothies my whole system has functioned SO much better.  I was even able to give up the Gatorade!

13. Bugs can be drugs!

I’ve also rekindled my interest in certain probiotics since my discovery of the Microbiome Project.  This (Probifia) is what I’m taking now, and afterwards I’m going to add as many beneficial strains of bacteria I can find. When it comes to intestinal flora variety is good.

Specifically, these are the many ways probiotics can help someone with dysautonomia:

I have definitely noticed a difference since I’ve made a concentrated effort to introduce more probiotics to my system. I make sure they are enteric coated and refrigerated so they make it to my intestines still alive.

As I mentioned earlier above, kefir is also helping me a lot, so much that when I stop drinking it for a week or two I notice a difference.

14. The Future is Bright!

Right now, there doesn’t seem to be any rhyme or reason to many of our dysautonomia symptoms.  But they only seem random.  There is a trigger; we just don’t know what it is yet.  Fortunately, researchers may be on to something, and that’s why I still have hope.

I believe that someday ALL auto-immune type nerve disorders will respond positively to the same kinds of treatments, once the researchers figure it out.  They may be getting close with the Microbiome Project, although targeted treatments for specific autoimmune disorders may be 10-15 years away.  I think I can make it . . . How about you? What’s been helping you?

Economist article:  The Human Microbiome


Just so you know:  It’s embarrassing when you start getting collection-type phone calls from a Catholic charity hospital.   It’s bad enough to have a bill collector call, but when the nuns come after you, that feels serious.

It’s not that I don’t have the money; I do.  It’s just that the billing and insurance got so confusing, and it was shocking to see some of the large dollar amounts on some of those bills.  A “facilities charge” for a simple diagnostic?  Were they shitting me?

Here’s something annoying:  Every trip to the emergency room translated to several bills, and I had three trips to the ER over a short period of time and it seems every doc/technician who poked his/her head through my curtain was an independent contractor who sent his/her own bill. Sometimes they’d bill me repeatedly, so I got confused over which bill it was and whether or not I’d already paid it.

Then there were the bills from the tests.  Test for this, tests for that, all of which by the way have turned out NORMAL.  Every one of these doctors and laboratories had to get in line and wait until it was all sorted out.  I’m up to my February appointments, and have Bunny’s rent to pay, thus they will need to wait.

Not to mention I’m about to receive a furlough notice from my job. Sequestration, bitchez.

So, I’ve decided to take a break from the medical, despite not yet having a diagnosis. Then again, perhaps it’s best NOT to have a diagnosis.  At least, that’s what my cardiologist told me last week. My tilt table test was a bust, because the hospital (Lourdes Camden same-day surgery, great place) had me pumped up on saline, which meant I FELT GREAT!!!  “This ride is boring,” I complained. “But I feel great on this IV drip, can I take it home with me?”

“It sounds like your problem is dehydration,” said the doctor who performed my test.

My cardiologist agreed. “Seems you have an issue with retaining fluids.”

Sigh. No kidding. I officially knew as much now as I did before I began my investigation.  “Sjogrens? Maybe?” I suggested. “I have the eye thing too.”

“Do you really need a label for it?” he asked. “Maybe you should quit while you’re ahead.”

I shrugged. Since there was no cure for Sjogren’s I suppose it didn’t matter.

“Right now, as things stand, your health looks perfect. I could sell you life insurance and make a fortune.” He gave me a meaningful look, as if he were telling me, without actually telling me, that there would be financial consequences for a diagnosis.  A diagnosis that, at the end of the day, probably wouldn’t help me a bit, especially since I was ALREADY doing everything I could do to help my symptoms.

He was probably right.

I started my New Year’s resolution early because I’ve been in the emergency room three times from passing out since last August.  So far, all diagnostics are normal, except for that one time I had hyponatremia (low sodium) in August.

Extreme thirst is one of my symptoms, along with extreme peeing, but my sugar levels are normal and none of my doctors suspect diabetes. Dehydration is likely the culprit, but WHY?  Also, despite the fact I “salt load” and drink Gatorade to avoid passing out, I’m only able to get my sodium levels to the lowest end of the normal range.  I shouldn’t have to try so hard.

It’s almost as if I have a salt wasting disease.  Since kidney diseases that cause true salt wasting are incurable I  hope my only problem is dehydration.  Perhaps it’s just allergies and negligence because  I have chronic sinusitis, which is dehydrating.  I also confess to getting tunnel-visioned at work, sucking on the same cup of cold coffee and not getting up from my desk unless I absolutely HAVE to.  That’s very stupid.

Then again, I may have Postural Orthostatic Tachysomethingorother Syndrome, also called POTS.  It’s a kind of dysautonomia.  Both my mother and my sister have it.  Unfortunately, when one has unexplained syncope a doctor’s protocol appears to be to start from the top of the head and work his or her way down. Thank God I have insurance: So far I’ve had a CAT scan and MRI of my brain, several EKGs, two EEGs, ultrasounds of my cartoid sinus, heart kidneys and ovaries. I also purchased an at-home blood pressure monitor and concluded I’m consistently in the 110/70 range with no irregular heart beats.

A neurologist, a blood doctor and an endocrinologist have declared me perfectly healthy and sent me on my way.  Next week I have a followup with my cardiologist, who I suspect will schedule a tilt table test.  In the mean time, I’m supposed to keep drinking my Gatorade and eating salt.

Surprising signs of dehydration

Most of us are chronically dehydrated and don’t even know it. One common reason is that we confuse thirst for hunger. Because we’ve ignored our body’s thirst signals for so long, we don’t easily recognize them. That’s why many people turn to a sugary snack when their body is actually asking for fluids instead. Constant snacking—and especially constant sugar cravings—can be one hidden sign of a dehydration imbalance.

Allergies With dehydration, histamine levels can increase and your immune system can become imbalanced, creating the perfect storm for dust, pollen, mold, and animal allergies to manifest.

Digestive problems Digestive ailments, especially acid reflux and constipation, are another lesser known sign of chronic dehydration. Hydration is essential to keep all functions of the digestive tract running smoothly.

Depression, irritability, or mental fog The brain relies on a relatively large portion of the body’s blood supply. With dehydration, blood supply can be reduced and may manifest in the brain as mental and emotional imbalances and in extreme cases, temporary mental impairment. Ongoing stress also increases dehydration in the body with high levels of circulating stress hormones, so dehydration and stress can be a vicious cycle. Stress also causes the body to get rid of fluids — the idea being that in a potential “fight or flight” situation, the body needs to be as light as possible. Staying hydrated and finding healthy ways to relieve stress can help break this cycle.

Pinky Clouds

Here’s an idea: Every January, do a word cloud of your previous year’s writings. The above is what happens when I type my blog address into a random word cloud generator.  It seems to catch the first “page” of my blog, and it’s clear I’ve spent the last few posts muttering about all my stuff.

I cut and pasted my text from my 2012 writings and got this: Ordinary words with plenty of qualifiers, almost as if I’m making excuses for something:  “because,” “actually,” “just,” “probably,” “only,” etc.

And when you take my whole blog, you get this:

Just All About Pinky and Spooky.  Which basically means I’m an ordinary gal with an online diary. Interesting exercise.

House in Order

I’m sensing a pattern here:  TOO MUCH SHIT

This is how I get my New Years’ resolutions to stick:  I’m not obligated to live up to any of them until December 31!

Too many people give up the first time they fall off whatever wagon they climbed upon:   One cigarrette and they’ve blown it, or if they sleep in one morning instead of going on that promised morning jog (or whatever) they think they failed.  If they’d only give themselves the WHOLE YEAR to achieve their goals they’d have a better chance of succeeding.

I gave myself a whole year to achieve my goal of distilling my “product lineup” to its bare essentials. 

It actually cost me a pretty penny, since my “bare essentials” are The Big Guns:  Growth factors, collagen builders and spot faders.  When a gal turns 40 she has a choice to make: Get Serious or Give Up.  It was worth the expense, because these products do exactly what they say they will, and I do look younger because of them. I also got rid of a bunch of unused crap and am enjoying the new open spaces in my bathroom.  In the long run, I believe, I’ll save money by not chasing every fad.

I did give up on my goal of sticking with only “green” products.  I’m sorry, True Believers:  Green products are pretty (pretty expensive), and their intentions are good, but they just don’t seem to work.

I also threw out my old makeup and bought new:  Basic neutrals, nothing fancy, a mix of high and low brands.  My favorite find is Shiseido’s primer.  I don’t know if I’m lucky or what, but it matches my skin tone perfectly and I can skip the makeup entirely if I want to.  That big eyeshadow palette is the Urban Decay Naked 2.  I like the colors, but not the fact that more than half of them are too glittery for me to wear to work, so I had to supplement it with some light matte colors from Sonia Kashuk (Target). When they wear out I’ll get the Urban Decay Basics.

Anyway, that’s all done and – oh look! – It’s 2013! Time for a new resolution, which is to get my “house” in order.  Unfortunately there are SO many layers to that onion, I’ll need to focus on just a few aspects.  I’ve narrowed them down to the following three:

1. Financial house in order:  Eliminate 2 forms of monthly debt payments. I’ve identified two candidates, and have until end of year to wipe them out. I’d like to eliminate debt every year until all I have left to pay off is my house.

This year’s “Storm of the Century” kicked some major ass

2. Actual house in order: Thanks to Hurricane Sandy my house needs a new roof.  That’s a bare-minimum goal for 2013.  However, for me to be able to sell the place I’ll also need plumbing/electric work, a new ceiling in the library, plus a few coats of fresh paint in the spare bedrooms.  I can do the painting myself, but the rest I’m going to have to contract out. Whether or not I can afford it remains to be seen: I already took money out of my 401K to pay for the roof.

3. Physical-house in order:  See dentist.  Get fillings if necessary. Whiten teeth. See neurologist/cardiologist/endocrinologist etc. and find out what’s causing those random dizzy-spell and loss-of-consciousness episodes.  Eliminate dairy from diet (again). The good part is, if I eliminate dairy I’ll probably lose 15 pounds (again), and my skin should clear up (I hope). Losing weight and clearing up my skin aren’t resolutions, however; those will just be happy side effects.  At my age there is no “controlling” what time does to the body.

Unfortunately, getting my House in Order will cost a LOT of money, and I still have a kid in college!  Maybe I should content myself with just choosing ONE thing on my list?  I suppose if I can pull off all three I deserve some kind of award,  since I probably won’t be able to afford much in the way of personal items during 2013. This year ALL my discretionary money will be going to the plumber, the electrician, the roofer, the doctors, the dentist, the laboratories, the radiologists, Bunny’s landlord, and the University! I’ve even given up my morning coffee.

So my present to myself for pulling this off is . . .

1. Peace of mind

2. Improved health

3. A graduating child – 2014 here she comes!

4. Something nice with staying power for EACH goal achieved, such as a nice piece of jewelry that will remind me of my accomplishments.  Of course, by January 2014 I’ll probably be so wiped out I’ll have to wait until 2015 to buy them.  I suppose that can be next year’s resolution?

I’ve put things off for WAY too long.  It’s time to get rid of about one third of my worldly possessions, and move the remainder within reach.

I have lots of stuff. I’m a Taurus, I can’t help it:  I need physical possessions, especially things that make me feel safe, secure, and comfortable. Material uncertainty, even ambiguity, will slowly drive a Taurus mad. We Taureans like to HAVE and to HOLD.  Come to think of it, marriage might have been invented by a Taurus, perhaps one with Venus in Scorpio.

Our things tell our story, for better or for worse.  Today I look at my “story” and know it’s a big mess.   “Hi, my name is Pinky I’m in limbo,” it says. “Much of what matters to me is out of reach in a money pit of a house I don’t live in. I have a ton of junk I won’t need since I’m gettting married but might need if I don’t, but I don’t like thinking about it, so it just sits there in the dark and damp, mouldering away.”

There is so much to read into that story, but for now I’ll just focus on the STUFF.

One does not need a hoarding disorder to have a complicated relationship with physical objects.   In America, even people who have difficulty paying their bills have Too Much Stuff.  Blame Credit Card Capitalism and a two-decades long national shopping binge. Americans have been trained by The Corporatocracy to associate consumer behavior with identity. “I shop therefore I am.” I’m no different than anyone else in this regard. Actually, I’m probably worse.

Identity-shopping WILL lead to wayyyyyyy too much stuff eventually, since we go through several life stages and/or frequently change our minds about who we want to be.  Who are we, or more like, who do we want people to think we are?  Athletic? We have gear. Tech savvy? We have gadgets. Cultured? We have books and wine cabinets and cigar boxes.  “Good parents?” Cribs and carseats and toys and bikes and . . .


The solution is to get rid of the stuff when it no longer has a place in our lives, but too many of us have a problem letting go.  We spent good money on it (so?). We might “need it” again (doubt it).  It could be worth money someday (unlikely).  For some of us, that quarterly haul to Goodwill is cathartic, but for the of us, our stuff only litters our lives and makes us unhappy.

Then, there is the hoarding. I definitely went through a hoarding phase during a particularly fearful and lonely part of my life.

Most hoarding behavior is anxiety-driven, fear being more deep-seated than guilt or regret. I can relate to this woman‘s struggle against hoarding. In fact, just to share, here’s where I store the paper goods.  And that’s not all! I still have over 50 rolls of toilet paper stored at an unoccupied house 30 miles away. A house that’s still chock full of STUFF. While shopping I resist buying more because irrational anxieties notwithstanding, I know there will not be a Toilet Paper Apocalypse. At some point one just needs to say enough already.

Beth Shak admits her bad marriage fueled her shoe addiction

As a Taurus, I know that in addition to my need for physical security I have a weakness for luxury, especially luxury the form of material objects with staying power.  I have good taste and for the most part do not regret the majority of my purchases. However, I can see the main categories in which I went overboard back in the day:  Fancy shoes, clothes, alcohol, housewares and books.  I didn’t need them; rather I was lonely, and I bought them to fill the emptiness inside.  It’s a lot to haul around, and I still have the VISA bill, so technically I haven’t even paid for it all yet.

I’m not alone, though:  I know people who claim to be immune to marketing, people who would never admit to questionable shopping/hoarding tendencies, yet who express frustration at their cluttered living conditions, thinking (erroneously) that they don’t have enough space.  At least when I express my own frustration over Too Much Shit I know where the frustration comes from; i.e., a feeling of loss of control, of disregulation, of a life ruled by Fear instead of Love. We use STUFF to fill the Void.

Oh yummy BPA-lined cans. Shit.

For instance, I know my Apocalypse Pantry from 2007-2008 came from a place of Fear. Five years later its contents are 80% used up and I’m in no rush to replace them.   I’ve lost that Doomer mindset and my prepping is more practical today, oriented more toward temporary weather conditions and supply shortages than TEOTWAWKI.   There are folks much better prepped than I who still stockpile food and gear the way squirrels bury nuts.  They may be unable to shake their sense of creeping doom, but I suspect it’s probably not due to their lack of material possessions but due to the Core Fear, i.e., a deep-seated (possibly genetic or medical) anxiety that would probably be better served by a dose of Zoloft, some magnesium and vitamin D supplements, a good book or movie, a big turkey dinner and a cuddle.

(NOTE: I no longer hoard canned goods, mostly due to the fact that they’re lined with bisphenol-A.  What remains of my prepping hoard is mostly dried foods.)

When is “enough enough?”  A good sign that it’s time to slow down is when you need a management system to look after it all. Unfortunately for my habits, on this point both Spooky and I agree: There is no such thing as too many books. Mine are even Dewey-Decimaled:  The above photograph shows series 300 through 800. Series 100-300 are in Spooky’s library (which is bigger than mine), and the 900’s are in what will someday be the parlor.

Spooky and I are in the market for more bookshelves, including built-ins, so this is one area where I won’t be downsizing.  Moving right along, I guess that means I need to take a look at . . .


In addition to a life of accumulating and fear based hoarding there are the complications that arive from combining households.  His Stuff + Her Stuff + Kids Stuff = Lots of Stuff.

For instance, between the two of us Spooky and I have enough dishes and drinkware to host a party of 50 or more. That hasn’t stopped us from acquiring more, but at least those purchases are driven by love instead of fear. So much adorable crockery, so little room to store it!  We rotate sets just to keep things in play and interesting. At some point though, we’ll need to concede that we don’t need six sets of dishes, four sets of drinkware, four stereos, three CD players, and three ironing boards.

After a lifetime of working, mothering, collecting and . . . I admit it . . . hoarding . . . I’ve concluded it’s better to live the Curated Life. Maybe it’s a life stage thing, since I see many older people downsize their lives as they get close to retirement, especially after their children leave the house.  I’m not ready to call myself “old” and I’m nowhere near retirement (unfortunately). I just think about it a lot.

“To curate” is a verb  from L. curatus, pp. of curare “to take care of.”  It means to oversee possessions, such as those of a parish or museum, but the word can be applied to how we manage our own lives.  A curator does more than stand guard over a bunch of junk; s/he is required to know his/her subject deeply and arrange things in a way that intentionally tells a story.

An important part of curating involves eliminating what doesn’t fit the narrative.  A museum curator might store or loan whole collections while telling a certain story.  She will sell or donate items that don’t blend well with the narrative, and she’ll acquire only those objects that contribute to the narrative.  I want to curate my own life in the same manner.

Love versus Fear is what I ponder while I putter around my other house, deciding what stays and what goes. I have not sold my house for a multitude of reasons, primarily the bad market and the fact that Spooky and I aren’t married yet.  My house is my only real asset besides Bunny’s college savings. So long as the housing market favors buyers over sellers, my instinct is to hold on.  The furnace and the water supply upstairs are turned off.  Unfortunately this means the dampness has begun to effect what I’ve left there.

So . . . What am I keeping it all for?  What’s with the magazines? Who needs that many dishes and glasswear? Why do I still have queen and twin sized sheets when I put the twin and queen mattresses out to bulk trash last August? Am I really saving my belongings for Bunny? Does she even want them? Am I too busy to deal with it all?  If there is “no place” for it at Spooky’s house, why not get rid of it and take the tax deduction?  What does it mean if I’m too frightened to do that? Am I afraid that the wedding will never happen?  Am I afraid I’ll have to move back to my old house someday?

Those are uncomfortable questions, rooted in Fear.  What would I do if I were motivated by Love instead?  I’d just move everything I could to Spooky’s and dump the remainder at Goodwill, that’s what. Paying a higher gas bill to keep an unoccupied home heated and dried bothers me, because it would be cheaper, frankly, to rent a U-Haul. Avoiding this decision does not serve my interests, but forcing the decision brings an even bigger issue to a head: What’s the Master Plan?

No matter what the future brings, I need to ACT.  Fortunately, during the last month or so it’s clear that I have acted. Two weeks ago I hauled many perfectly good objects to Goodwill, furniture and dishes and decor,  because I knew we’d never use them at Spooky’s.  Last weekend I rescued my books and some of my linens, which had begun to smell of mold.  For days the books were splayed out in Spooky’s sunny Florida room to dry, and I broke down and bought a can of poison (Lysol) to spray their pages.

I still fear for mother’s Victorian silk sofa and chairs, still at my house sitting unused in the humidity. They need to come home, to my new home here at Spooky’s.  The parlor awaits, empty 3 years and counting.  After I pay Bunny’s spring tuition, I’ll need to save money for a major furniture haul.  Moving Day is nigh . . . but first, the purge.

to be continued . . .

Coconutty PMS

Got PMS zits? Coconut oil soap is magical in that it’s somehow drying and softening at the same time.  It’s an affordable weapon for anyone’s anti-acne arsenal.

However, use it for more than a week at a time and you’ll probably be sorry:  Many experience a “rebound effect” as their skin finds a way to over-react to the dryness.  Sometimes this over-reaction involves MORE breakouts and the bitter conclusion that coconut oil soap “doesn’t work.”  Oh it works all right, because all oil soaps are paradoxically drying, but perhaps it works TOO well.

I found a way to take advantage of the anti-acne benefits of plain coconut oil soap by only using it for a few days during PMS-time, then switching to a gentler cleanser during the rest of the month.  This way I avoid the rebound effect while clearing up what my hormones do to my face. It works!