A prescription away from what, exactly?

I live with chronic pain and fatigue.  I have since I was 9 years old, over 20 years ago.  It’s chronic though not consistent in severity, although overall, over the years, it’s degenerative.  All the causes, as well as the whole fight to get anything done about it….well, that’s another post.  Let’s skip ahead a bit.

I was on Vicodin for a little over a year and a half, until the Dr. who was giving it to me moved out of my insurance network.  I never became addicted, since I could take it fairly regularly my body adjusted and I barely even had the sleepy side effect, and I took it on an as-needed, relative-to-what-I-had-to-do-and-the-balance-between-pain-and-alertness-factor basis, just like all of the other options I had in my arsenal at the time — also with conflicts in mind, of course.  I had about a 50% increase in functionality….which, considering how functional I’m usually NOT, is a big deal.  I was exercising to the extent that my body lets me (bearing in mind structural deformities and the like), I was able to get Ash out of the house more often, I was able to get work done in my studio to earn extra money, I was able to keep up with the housework better, and I wasn’t spending my days and nights utterly exhausted.  It was the best I’d felt in years, and I haven’t felt as good since. Most people wonder why I didn’t suddenly get so much more done last year, since Ash was finally in school, and there was this big chunk of hours, five days a week, when I was free to get work done or whathaveyou.  The fact is, I spent most of the past year being too exhausted, and in too much pain, to do much of anything.  I didn’t have anything of suitable prescription strength to combat it.  I have to save my spoons for taking care of Ash, and if I don’t need to be “on” for him, I’m in a daze of pain and fatigue and using whatever tricks I can to keep my body from being even less likely to move when next I need it to.

I MISS VICODIN.

~~~~~~~~~~~~~~~~~~~~~~~~~

I grew up with abuse.  I graduated from high school in three years so as to make my escape earlier, only to end up with a freshman roommate with NPD.  Before I figured out that you have to break the chains of abuse inside you as well as those around you, I also had a boyfriend who was an emotionally manipulative cheater.  Even once my emotional life became healthy, my circumstances weren’t necessarily so.  I have found myself in a position of responsibility regarding someone with BPD.  I’ve lived on the razor edge of poverty.  I live with being the physically disabled mommy of a neuro-disabled son that we were told not to expect to survive.  Just a….selection….you know.

There are certainly worse things that can happen to a person, but that hasn’t stopped me from earning a few PhDs from the School of Hard Knocks.

Through all this, I have never once been on a “head-med”.  I’ve never even had professional counseling.  I have been doing it for myself my whole life, and it works for me.  Sometimes I wonder HOW it works for me, but it does.  I’ll admit, I’m somewhat proud of that fact.  A little self-moderated PTSD and BDD, but aside from that, my psychiatric profile is remarkably stable.  I’ll confess, I’m also happy about it — about not needing any “head-meds”.  Oh, don’t get me wrong, I’m not especially prejudiced against them, or those that take them.  I do think too often then are used inappropriately in one sense or another (again, that’s another post), but I also know a ton of people who have valid chemical and/or circumstantial need for them, that they work well for.  I’ve got no problem with that.  That doesn’t mean I don’t prefer NOT needing them, though, especially when it comes to myself (and my kid, but yet again, that’s fodder for another post).  If it tells you anything, teetotalling isn’t a choice for me — not with a history of alcoholism in the family, a circulatory disorder, the alcohol tolerance of a fieldmouse and plenty of potential drug interactions — but it’s a choice I’d probably make anyway.  Caffeine aside, I’m not a big fan of altering brain chemistry just to get more….or less….out of a situation.  I rather do the same thing naturally, with full self-awareness and self-control.  An uncommon side effect of my upbringing, perhaps.

Eniways, so it goes.  I’ve been offered anti-depressives and anti-anxiety meds in the past, at likely times, but I’ve always turned them down.  I was the woman filling out the weekly parent depression questionnaire at the NICU with things like, “Well, you didn’t really expect me to feel GREAT right now, did you?  I mean, that would be a bit….off.”

~~~~~~~~~~~~~~~~~~~~~~~~~

The issue of whether or not to have an epidural during labor is a somewhat controversial, fairly loaded one.  When I was going to have Ash, however, the decision was taken out of my hands.  It was deemed medically necessary for me to have one, so as to reduce the strain on my heart condition.  Would I have been strong enough to push through (no pun intended) without one, for the sake of just-in-case-it-would-be-for-the-best?  I have no idea, but it was a moot point.  Apparently, my body required one, to have a shot at functioning at all.

~~~~~~~~~~~~~~~~~~~~~~~~~

Bear with me.  This is where the three bits and bobs above, all come together.

Seeing as how we were about to fall into a gap in our medial insurance again (because if Steffan makes $12 too much a month for state aid insurance and food stamps and full disability payments for Ash, it totally balances out not receiving the thousands of dollars’ difference in our medical-debt-drowned-budget, right?) — and remember, the last time this happened, just shy of a year ago, is when my gallbladder decided to go kerplodie, so let’s all pray, please — Steffan and I managed to sneak one last Dr’s appointment for each of us in, on the last day of August.  The hope was that we’d be able to both get and pick up a new asthma inhaler Rx for him, and new birth control and pain-killer Rx’s for me, that afternoon.  Weeeeelllll Steffan got his Rx….he’s got one fresh inhaler in hand, and so long as we get some sort of insurance back so he gets the Rx coverage to pick up more, he’s got more refills on it for the next year’s time than he should, hopefully, need.  I have a year’s worth of refills on my birth control, although since I was halfway through a pill-pack at the time, they wouldn’t give me another one, so there will probably be at least a few months before I have the insurance to pick any up affordably.  I’m not looking forward to that, since for me, birth control pills aren’t just about being extra, extra careful.  Without them I develop ovarian cysts, alternating with having them burst, every month.

But then we get to the fun part — my pain killers.  I did not walk away with an Rx for Vicodin.  I didn’t even walk away with an Rx for Diclofenac (my arthritis medicine, which is ibuprofen based, the reason — because of conflicts — I don’t also have an as-needed med specifically for migraines), plus Tylenol3 (codeine-spiked, prescription-strength acetaminophen), as had been fairly standard, if only vaguely helpful, in more recent years.  I wasn’t even given bloody 800mg ibuprofen, which I laughed desperately at when it was originally “tested” for me, since I can get THAT much into me by taking four of the over-the-counter ones.

Nope.  There were a number of arguments featuring attempted logic like:

Her: People are not meant to be on pain-killers long-term.
Me: People are not meant to have their joints in the wrong places.  People are not, in fact, really MEANT to have any number of issues which result in plenty of people out there besides me, being prescribed reasonably strong pain killers on a regular basis.

Her: If you take any given narc for too long, it stops taking care of your pain.
Me:  If I’m not taking the narc at all, it doesn’t even start taking care of my pain.  There are other narcs out there besides Vicodin which have been proven as options for me, should occasions arise when I need some short-term, heavy-duty pain-killing distinct from the effects — dwindling or otherwise — of Vicodin.  In the meantime, I have a history with Vicodin which proves substantial results with next to no side effects and a resistance to its addictive properties, when taken on a regular basis, over a period of at least two years at a stretch.  I wouldn’t know if I could go for longer on it, because that’s about when it was cut off, and it’s been around two years, I think, since I’ve gotten it back…

Her: There has to be a more direct way to address the problem.
Me: You mean like going to the Pain Clinic, which I’ve been waiting for my referral for an appointment to go through for, for over two years?  Or like having things like regular massage therapy, custom braces, accessibility tools and mobility aids, to reduce the accumulating strain, that myself and my doctors have yet to convince insurance to cover?  Or perhaps you mean addressing some of the physical conditions even more directly, something one of the top specialists in the country, a veritable House MD of his genre of medicine, threw his hands in the air and declared beyond his vision to do anything about, after he ran out of tests and scans and whatnot.  And by the way, the things which he says are impossible to do, are basically what I’ll need done if I continue on this track, especially if I continue adding strain to my structurally unsound joints by continuing to gain weight now that having a child changed my metabolism, because I am in too much pain to exercise, and too physically unsupported to exercise THROUGH more of the pain.

You get the idea.

No, despite all, my Dr. (who until now had proven one of the more useful ones) would not give me any sort of (pre-established-in-terms-of-me or otherwise) drug designed as a pain killer, for my pain.  She gave me Cymbalta.  That’s an anti-depressive.  I’ve never taken it before.  I’ve never taken anything like it before.  Did I mention it’s an anti-depressive?  I am diagnosed with all sorts of things that result in pain.  I’m not diagnosed with clinical depression.

No, she wasn’t doing this because she suddenly decided it was all in my head, or because she thought it would be helpful to help me feel happier about the pain which wasn’t being treated, and its compounding impact on my quality of life.  To be fair, there’s some medical precedent for Cymbalta being prescribed specifically for pain associated with Fibromyalgia and Osteo-muscular related pains, which certainly are among my major issues.  To be fair to the immediate reactions of Steffan and myself, she also didn’t get into any of that.  What she said was, “Well, there’s been some evidence that a side effect of taking Cymbalta for depression is that there can be a reduction in fibro pain, though they don’t understand why, and since taking Vicodin only gave you a 50% improvement, maybe we should experiment with this.”  Note that she only mentioned fibro pain.  I have fibro, and pain from fibro.  I also have pain from a number things that are not fibro.  Things which have nothing to do with the rhaumatological system.  Things which would therefore, according to only this information, not be addressed in the slightest by this treatment.  And by the way, “experimenting” with my physical and emotional capacity to function, when it isn’t necessary, and when I have a special needs child that I am the primary caretaker for, does not strike me as material for a casual proposal.  Oh yes, this all sounded PERFECTLY RATIONAL.

Option 1) I’ve taken the drug before.  I didn’t get addicted.  It made a big difference in treating what it was designed to treat, which is something I have a diagnosis for.  I had next to no side effects.

Option 2) I’ve never taken the drug before, or anything like it.  It’s designed to correct a particular kind of chemical imbalance in the brain, which I don’t actually have, so we really don’t know what it might do to me.  The goal is treatment VIA one of many potential side effects, some of which are quite nasty and dangerous.  We don’t know what it might do to me, and we don’t know if it will do what we hope.  Oh yes, it also conflicts with a good lot of pain-killing options, from my dwindling stash of more effective things, or even the standard stuff — and, if it works, it probably won’t work for a month.  So, that means basically no pain-killing AT ALL for a month.  Right as we’re getting to the season where I start hurting even more.

We are less than thrilled.

In fact, ironically enough, it made us feel a bit depressed.

But so it goes.  Things happen to be fairly depressing right now, for other reasons, but I was getting along without pharmaceutical aid.  But now, for lack of options, I’m going to be going on an anti-depressant anyway….for pain.

Doctors…can’t always live without ‘em, so often want to kill ‘em

Poor Ash.  Every time he got around 70-80% better, he got worse again.  He went from thinking he’d have a birthday party to thinking he’d have play-dates and activities to spending his entire Spring/Easter/Birthday break having copious amounts of green-yellow snot purged from his nose.  Just last night it turned into a bigger thing again, with the congestion & runny nose remaining, the cough getting worse again, and the “sick tummy” and fever coming back.  Mmyeah, we’re not really having much luck with birthdays this year.

Before I could even call the Dr.’s office to make an appointment for him (which I wasn’t able to arrange for until Wed. afternoon, most of the way through the school day….assuming he can go to school — and all things considered, it’ll end up a combo visit, part 6yr annual-appointment, and part, “Hey, my kid can’t seem to stop being sick.”)….before I could even call them, they called me.  It was in relation to one of our THREE PENDING REFERRALS.

See, early last month we went back there just to follow up on them.  Two were for me.  One is a referral for the Pain Clinic that’s been pending for a good year and a half now, since the last of the Ortho specialists gave up, and the Rheumatology doctor who happened to be his Fellow that day gave me an on-the-spot Rheum consult for Fibromyalgia, hoping to, “Save me time.”  No one can seem to decide if they have enough records, or have remembered to share enough records, to validate my need for this referral.  After over 20 years of fighting this fight, and now it probably being too late (based on time frames within which you’re supposed to have earned a certain amount) to even try re-re-applying for Disability, I am….less than amused.  The other one for me involves the fact that at my last gyno check, I had finally convinced my latest Dr. (she being a breast cancer survivor herself) to refer me for an annual mammogram, since when you have enough family history (both grandmothers, at least one or two aunts, and a scare with my mother, last I knew) those are supposed to start at 30, not 40.  She felt around until she felt potential lumps, and sent me right over for a mammogram.  That turned into a mammogram and three rounds of sonogram.  Masses were found on both sides, and while they were tentatively judged to be benign (potentially scar tissue from removed moles that had mutated), they wanted me to go back for a short-term re-imaging, just to be safe.  Yep, the second of the for-me referrals I’m still trying to get them to follow up on, is the appointment THEY have to make FOR me, for the re-imaging.  I’m now two months late for it.

The third referral is for Ash, and it’s been pending since late Autumn, I think.  The state Dx-ing eval center recommended a referral for a pediatric neurologist, after they decided that they didn’t think Ash had mild Cerebral Palsy after all, but definitely had some sort of neuro-muscular disorder in addition to his purely neuro issues, they just weren’t sure what.  Now, we’ve given copies of their report to the Dr.’s office twice, ourselves, in addition to the fact that they were supposed to have received it directly from the center.  Well today the Dr’s office called to tell me that they still don’t have the records they need to put the referral through.  I know they’ve been converting things to an electronic records system….did they lose the paper copy of the report from the eval center AGAIN, while they decided which version of his file to add it to immediately?  “That’s the thing, we don’t have a file for him.  We don’t have ANY records.  You can’t expect us to refer him for something when we don’t have any information on why it would be necessary.”  Um…excuu-the-f*ck-use me?!  They should have a paper file for him a good two inches thick at least, containing everything from his premature birth through that appointment last month.  We have our own copy that goes up through him being just shy of three years old, when we made the big move, and we have our own copy of the various school and state/medical evaluations he’s had since then, although THEY are the only ones with all the record details from the normal medical stuff from the past 3 years here, with the exception of vaccination records shared with Ash’s school.  Now, that doesn’t leave a lot of missing information…just the formal notes on height/weight at well-child visits, really.  But that whole file?  That’s a monster to make another copy of, and we’ve already been through that.  And they have managed to LOSE this entire file?  And they are going to give me attitude about how it’s MY fault that they are long overdue on putting a referral through, because I neglected to be aware that they had done so….oh, sorry, I mean that I must have forgotten that they never actually HAD this file.  That they were still adding to.  Last month.

Good times, baby.  Good times.

 

Q/A: What are the spoons that you often mention?

The metaphorical spoons that you use can pile up really fast...if you're not careful, you won't have any left inside your proverbial drawer!

Sherri from New York City, NY asks:

“What are the spoons that you often mention?”

I don’t have an obsession with kitchen utensils, I promise!  It’s not even an in-joke, really….it wouldn’t be even if it was funny.  What I’m referring to when I mention spoons is my Spoon Theory for Special Needs Kids, which is based on the original “Spoon Theory” by Christine Miserandino (Twitter user @bydls) of ButYouDontLookSick.com.

In the latter, Christine offers an astoundingly useful and impressively effective metaphor to explain how and why those with disabilities resulting in chronic pain and/or fatigue must ration their reserves of physical and mental energy, down to the smallest acts that most people take completely for granted.  Her “Spoon Theory” is slowly being adopted worldwide into the vernacular or day-to-day medical realities, and the autobiographical explanations which many of the disabled – and those who empathize with them – use to express such a pervasive part of both their lifestyle and, in some cases, sense of identity.  A growing number of people who live by the “Spoon Theory” are even starting to refer to themselves as “spoonies” on social networking sites like Twitter.  The mainstreaming of this is especially prevalent in the Lupus and Fibromyalgia communities, as well as among Cancer patients undergoing chemotherapy.

In the former, I put my own spin on things (as I so often am wont to do, I know) by explaining how the metaphor of the “Spoon Theory” has equally valuable applications for many of those with neurological disabilities.  Considerations here are not just reserves of mental and physical energy, but also reserves of things like self-control, modulation, processing ability, and coping mechanisms.  This can be of particular use to patients and caretakers of those with conditions like Autism, Sensory Processing Disorder and Attention Deficit (Hyperactivity) Disorder.

 

——————————————————————————————-

Got Spoons?  The S.L.E. Lupus Foundation has been among those leading the way for the past 40 years in delivering care, raising awareness, and educating people about the rare disease.

 

S.L.E. Lupus Foundation
330 Seventh Avenue, Suite 1701
New York, NY 10001

Phone: 800.74.LUPUS (toll free)
Fax: 212.545.1843
Email: lupus@lupusny.org

 

The spoon theory for special-needs kids

Those who live with physical disabilities resulting in chronic pain and/or fatigue know that everything in the experience of their day has a price, and when it comes to reserves of mental and physical energy, they are living on a serious budget.   This necessitated lifestyle, and the ramifications of both choices and non-choices that come with it, has become known and explained by way of a metaphor called “The Spoon Theory” (credited to Christine Miserandino.)  As someone who has had degenerative osteoarthritis for 20 years already, and who has friends living with lupus, with fibromyalgia, and with chemo treatments, I use the term often enough, myself.

But something occurred to me today — and I honestly don’t know why it took me this long — “The Spoon Theory” is also a great metaphor to use when trying to understand, or explain, life with/for many of those who have ‘special-needs’.

Think about it.  Well ok, if you still don’t know what I’m talking about, first click the link and read the “Theory”, and then think about it.  All you really need to do is change what the spoons stand for.  Instead of representing reserves of mental and physical energy, they represent reserves of self-control, of coping mechanisms, of the ability to process the experiences of life, period.  (And please understand that I would never argue that these neuro-issues, even when strongly based in the realms of the mental and emotional, don’t have the side effect of being physically draining as well….an issue which often circles back around to yet more neuro- difficulties.) If your child has any kind of neurological disability which affects their ability to process/modulate/regulate/organize, and/or any that interferes with positive behaviors and triggers negative behaviors (in an environment that encourages or demands the former, and discourages the latter), then you know that on any given day, there is only so much that child will be able to handle.

Let’s take, for example, a child with Sensory Processing Disorder.  Let’s say they tend to be hypersensitive when it comes to their sense of hearing, but hey, they are having a pretty good day when it comes to audio processing.  So, a normal day goes on, and it’s only close to bedtime when they start whining for you to turn off the music that is playing softly in another room….acting out more and more, in ways that are against the rules, the more you try talking to them about how they need to ask nicely and then wait, not whine….and then simply clutch their head, scream, and lash out at even a whispering-you, when you try to console them, when a phone dares to ring.  They had been doing pretty well with not having an atypical reaction to normal noises, but all the same, the noises of the day had accumulated, and eventually they’d reached their limit.  Now let’s say that same child is having a bad day for audio processing, and is very hypersensitive.  It’s the same day as before, but they start whining, “Turn it off,” from the moment they get up, even though you can’t think of anything noisy that is on.  (Guess what?  They can hear the hum of the heat or air being moved though the ventilation system of the house, and it is like nails on a chalkboard to them.)  They start acting out at breakfast because on top of it all, they have to put up with the whirr of the coffee pot.  And when their behavior makes you whip around and knock your waiting mug off the counter, the resulting thump-crash against the floor brings on a meltdown that cannot be cleaned up easily with a few damp paper towels and a minute or so, and has nothing to do with your wasted caffeination.

In this scenario, , the child simply couldn’t handle much noise at all, and with the normal sounds of the day all taking an atypical toll on them, they reached their limit for the day before they’d even been up for an hour.  It could go the other way, too.  If the child was extremely hyposensitive that same day, their frustration at not getting the sensory stimulation they needed, just from the normal audio offerings of the day, would also build up and wear them out in ways nonsensical to the neuro-typical.  The non-disabled have a spoon factory…not incapable of running out of supplies, of needing some extra maintenance after a long run of mass-production, or of requiring emergency shut-down if something goes wrong…but in general, if a spoon is needed, there’s one somewhere in reach, or on the way.  For those with this kind of disability, however, there’s only one kitchen drawer, and you’ve got to pick which pudding cups you really wanted to try, and when, because man, those spoons run out fast.

Here’s another thing that occurs to me: when someone lives by  the “Theory” as originally intended by its author — that is, their spoons represent physical and mental reserves of oomph — they might run out of spoons but still, say, have metaphorical forks.  (Not necessarily, but they might.)  Maybe my friend with fibro just can’t walk any more after only half the day’s errands, but at that point, she can use her wheelchair.  It’s not the same, but it makes up some of that difference.  (You can eat soup with a spoon but not a fork…you can, however, eat ice cream with a fork, if not so easily as you can with a spoon.)  When we shift the “Theory” to ‘special-needs’ of a more purely neurological nature, though, there ARE NEVER forks.  Or knives.  Or chopsticks.  You get the idea.  When your brain is short-circuiting, your brain is short-circuiting, and there’s really no way around it.

Before I had that last thought, I was going to ask if this new angle on the “Spoon Theory” should be called the “Fork Theory” or something.  I think I ruined that, though.

~~~~~

they might.)  Maybe my friend with fibro just can't walk any more after
only half the day's errands, but at that point, she can use her wheelchair.
It's not the same, but it makes up some of that difference.  (You can eat
soup with a spoon but not a fork...you can, however, eat ice cream with a fork,
if not so easily as you can with a spoon.) When we shift the "Theory"
to 'special-needs' of a more purely neurological nature, though, there ARE
NEVER forks.  Or knives.  Or chopsticks.  You get the
idea.  When your brain is short-circuiting, your brain is
short-circuiting, and there's really no way around
]]>
For more info: 


The image accompanying this article was found here, at the blog of a woman with a diagnoses of Arnold Chiari Malformation, Syringomyelia, Ehlers-Danlos Syndrome and Tethered Cord Syndrome.