Nope, I haven't shriveled up and blown away. Stopped my meds (against medical advice... don't tell my doc), which means the lethargy has lifted. Been busy, and not in the mood to write.

Got a new camera this week, so replace the defunct one. Discovered the best way to get smiley but uncheesy pics is to say something vulger. It worked like a charm.

Brief manic phase means I finally got around to repainting my room. Put the almost-last touches on today. Really had to suck it up to finish, because this morning I was so fatigued and sore I was verging on tears of frustration and exhaustion. All done but the acquiring and setting up of a bookcase or two. That's in next month's budget, I'm told. So until then, boxes of books will live on the kitchen floor.

Samantha's a huge fan of my new "beauty station". I explained that it's called a "vanity", but she prefers her term. She's stubborn, like her mother.

New happenings at Chez Frog Hollow. Today in the mail we received sixteen tiny green button quail eggs. Not much bigger than the dime I put next to them for scale.

Rumor has it that real live birds will hatch from these in about two weeks time. Very small birds, one presumes.

Stay tuned...





Editor's note: Three weeks after arrival, cracked them open to discover they never developed past being fertilized. Saved a half dozen for the shells, which are very pretty.

There are three things I hear repeated over and over about fibromyalgia, both on the internets and off, that have really been bothering me. Aside from the usual well-intentioned but wrong-headed comments such as, "everyone has aches and pains, and gets tired sometimes," and "you're just out of shape... get some exercise" (don't get me started), there are other, even more insidious remarks and beliefs that I've heard, even from doctors.

1. "It's all in your head" or "You're just depressed"

Well of course it's in my head! That's where all pain is. No brain, no pain. I do want to clear up the misconception that fibromyalgia and depression are inseparably linked. Yes, it's true that many people with FM end up developing depression. It's also true that some people who have depression are struck by fibromyalgia. Studies have shown that there is a strong correlation between the two, and those of us who have both know well that each condition exacerbates the other, causing us to spiral down and get worse. In addition, antidepressants have been proven to help depression, of course, but also alleviate the symptoms of FM.

Correlation does not imply cause and effect. I believe that in the near future, research will bear out my belief that one does not cause the other, but rather that both FM and depression are caused by the same chemical imbalance of neurotransmitters in the brain. I suspect that a deficit of serotonin, norepinephrine, and possibly dopamine as well is the culprit for setting off both clinical depression and fibromyalgia.

This is why I cringe when I hear the "all in your head" cause of FM. Yes, that's where the imbalance is located, but the same can be said for the common cold, or cancer, or anything else. It's all in your "_____".

2. "You need to minimize stress/you're too stressed out"

This one makes me livid. People quote studies that "prove" that stress causes illness. Even my doctor has fallen for this cloudy reasoning on occasion.

First of all, define "stress". How did the studies measure it? How did they prove that this so-called "stress" was the cause of the illness?

Upon reading through these studies, I find that there are two camps. The first simply calculates whether illness struck within a "stress window". For example, the patient developed FM symptoms within six months of a divorce or a new job, a baby, new lover, turning forty etc.

That's like asking if I got ill within six months of my birthday. Of course I did. The odds are excellent that you can think of some life stressor that occurred around the time you got sick, especially in hindsight, as we tend to look back and try to find a cause for our misfortune.

This camp says there's no such thing as good or bad stress; it's all the same. Most people can come up with at least one incident per year that can be lumped into the life stressor category. Did that cause the fibromyalgia? Almost certainly not.

The second group of studies in the "it's just stress" theory of illness are even more suspect. They are based on anecdotal evidence of perceived stress, asking basically, "how stressed are you?"

Obviously, people are more stressed out when they are feeling unwell. The job they once loved when they were well can become a living nightmare when they are dealing with pain, fatigue, unreliable bowels, memory problems, and the multitude of other issues that go hand in hand with FM.

Normally, I love to hear my kids playing together. If you ask me on a good day, I'll smile and tell you it's not stressful at all, but on my bad days it becomes overwhelming. The stimulus itself (that of my kids playing and making noise) hasn't changed. What has changed is the number of stimuli I have to process at once, and thus my perception of this particular one.

This is especially true if one of those stimuli is unpleasant. Basic psychology tells us that exposure to one unpleasant stimulus causes other stimuli to be perceived as worse than they would be if encountered on their own. In other words, smelling a bad odor can cause a person to perceive pain as more intense than it would have been if they had not smelled that odor.

Put simply, to go back to my example, being in pain caused the stimulus (hearing my kids play) to be experienced as a negative stress. Our brains are hard-wired to remember negative experiences much more readily that positive ones. Ergo, "My kids are screaming; it's stressing me out and giving me a headache" is more likely to be the explanation, rather than, "The noise my kids are making is more unpleasant than normal because I have a headache."

Therefore, the way those studies are set up is fundamentally flawed. The evidence is not measurable, it is anecdotal, and the very nature of it is biased towards attributing cause and effect incorrectly.

My life is so much less "stressful" now than it was before I got sick. I'm much more relaxed now than ten years ago. In fact, the only significant "perceived stress" in my life stems from being ill. Since the stress of being ill obviously didn't cause my illness, stress must not be the cause of FM. Most certainly, if eliminating stress were the answer, I'd be cured.

3. Fibromyalgia is what they call it when doctors don't know what's wrong with you

Ah... the good old wastebasket diagnosis theory. It goes hand in hand with "there's no such thing as fibromyalgia" and it infuriates me.

Fibromyalgia is not a throw-away diagnosis, a catchall to explain every ill that doctors are too busy or too lazy to figure out. It's not even true that there's no test for it. There are lab tests such as brain scans and spinal taps as well, but they are expensive, not readily available, and not necessary for a diagnosis.

Just as illnesses such as Ehlers-Danlos syndrome or Menkes disease are names applied to a specific set of symptoms, the same holds true for FM. To be diagnosed with FM, you must meet two very specific criteria:

• widespread pain in all four quadrants of at least three months duration.
• at least 11 of 18 specified tender points upon palpation. (By the way, over 75 tender points exist in FM, but most are not used in the diagnostic process).

If you do not meet these two diagnostic criteria, you do not have fibromyalgia, plain and simple. Doctors don't simply throw the diagnosis out there if you walk into the office complaining of pain and fatigue. They run lab tests to eliminate other causes, ask careful questions, poke and prod. If anything, most doctors are cautious about applying the FM label; most likely, they'd rather you had some illness they can cure. It's definitely not a catch-all.

It's true that there are many and varied symptoms associated with the diagnosis that seem unrelated, but if you don't meet the main two, they aren't going to tell you definitively you have FM. One of the problems with getting a diagnosis is that the symptoms DO seem unrelated, trivial, and they come and go. For years I went to see doctors for each specific problem (shoulder pain, knee pain, bowel pain), but it wasn't until I went in and told my doctor in frustration that everything hurt all the time that the puzzle was solved.

Up to that point, I'd get a test done, like an xray on the knee, and be told to go home, rest and ice it. It never occurred to me that my iffy bowels were in any way related to the ache in my joints, or that the fatigue I felt had a cause other than lack of sleep. Without the other clues, there simply was no reason for the doctor to suspect FM. I had dozens of individual diagnoses, but nothing that explained why I always felt crappy.

In my case, I was sick for nearly seven years before the pieces came together to form the big picture that is FM. The diagnosis did not come in one office visit. It took blood tests to rule out other causes, questions about everything under the sun, and a visit to a specialist, before I got the name of this damn disease.

There is something specific causing my problems. it's called fibromyalgia. It's not new. Symptoms bearing a remarkable resemblance to FM are mentioned in the old testament of the bible. Doctors have known about it since the 1800s. It's been called rheumatism, fibrositis, and hysterical paroxysm. The term fibromyalgia was coined in 1976, but it wasn't until the diagnostic criteria I discussed above were published in 1990 that the disease came into the public spotlight.

Fortunately, in the twenty years since, fibromyalgia become understood by most doctors. There are a few hold-outs, as there always are, but they are relatively few.

This is a case where the internet has done as much harm as good, because it allows proliferation of these three misconceptions. Too few people stop and think critically about what they read. It's simply too easy to copy and paste misinformation from one website to another.

Whew! That's it in a nutshell, as it were. Ahem.

So, fellow spoonies... what's been your experience? Have you run across these attitudes? Do you disagree with my take on them? You wouldn't be the first!

I spent the day reading one of my old college texts and ran across this poem by Coleridge. Although it was assigned many times during my career as an English major, I'd never spent the time on it that it deserved.

Now, I find, it speaks to me. I expect that anyone who deals with invisible illness, especially the ones that involve pain and the resulting depression, can relate. This poem pretty much sums up how I've been feeling the past couple of weeks.

For inquiring minds, a discussion of the work can be found at SparkNotes.


Dejection: An Ode

Late, late yestreen I saw the new Moon,
With the old Moon in her arms;
And I fear, I fear,
My Master dear!
We shall have a deadly storm.


Ballad of Sir Patrick Spence




I


Well! If the Bard was weather-wise, who made
The grand old ballad of Sir Patrick Spence,
This night, so tranquil now, will not go hence
Unroused by winds, that ply a busier trade
Than those which mould yon cloud in lazy flakes,
Or the dull sobbing draft, that moans and rakes
Upon the strings of this Æolian lute,
Which better far were mute.


For lo! the New-moon winter-bright!
And overspread with phantom light,
(With swimming phantom light o'erspread)
But rimmed and circled by a silver thread)


I see the old Moon in her lap, foretelling
The coming-on of rain and squally blast.


And oh! that even now the gust were swelling,
And the slant night-shower driving loud and fast!
Those sounds which oft have raised me, whilst they awed,
And sent my soul abroad,


Might now perhaps their wonted impulse give,
Might startle this dull pain, and make it move and live!




II


A grief without a pang, void, dark, and drear,
A stifled, drowsy, unimpassioned grief,
Which finds no natural outlet, no relief,
In word, or sigh, or tear--


O Lady! in this wan and heartless mood,
To other thoughts by yonder throstle woo'd,
All this long eve, so balmy and serene,
Have I been gazing on the western sky,
And its peculiar tint of yellow green:


And still I gaze--and with how blank an eye!
And those thin clouds above, in flakes and bars,
That give away their motion to the stars;
Those stars, that glide behind them or between,
Now sparkling, now bedimmed, but always seen:
Yon crescent Moon, as fixed as if it grew
In its own cloudless, starless lake of blue;
I see them all so excellently fair,
I see, not feel, how beautiful they are!




III


My genial spirits fail;
And what can these avail
To lift the smothering weight from off my breast?
It were a vain endeavour,
Though I should gaze for ever
On that green light that lingers in the west:
I may not hope from outward forms to win
The passion and the life, whose fountains are within.




IV


O Lady! we receive but what we give,
And in our life alone does Nature live:
Ours is her wedding-garment, ours her shroud!
And would we aught behold, of higher worth,
Than that inanimate cold world allowed
To the poor loveless ever-anxious crowd,
Ah ! from the soul itself must issue forth
A light, a glory, a fair luminous cloud


Enveloping the Earth--
And from the soul itself must there be sent
A sweet and potent voice, of its own birth,
Of all sweet sounds the life and element!




V


O pure of heart! thou need'st not ask of me
What this strong music in the soul may be!
What, and wherein it doth exist,
This light, this glory, this fair luminous mist,
This beautiful and beauty-making power.
Joy, virtuous Lady! Joy that ne'er was given,
Save to the pure, and in their purest hour,
Life, and Life's effluence, cloud at once and shower,
Joy, Lady! is the spirit and the power,
Which wedding Nature to us gives in dower
A new Earth and new Heaven,
Undreamt of by the sensual and the proud--
Joy is the sweet voice, Joy the luminous cloud--


We in ourselves rejoice!
And thence flows all that charms or ear or sight,
All melodies the echoes of that voice,
All colours a suffusion from that light.




VI


There was a time when, though my path was rough,
This joy within me dallied with distress,
And all misfortunes were but as the stuff
Whence Fancy made me dreams of happiness:
For hope grew round me, like the twining vine,
And fruits, and foliage, not my own, seemed mine.
But now afflictions bow me down to earth:
Nor care I that they rob me of my mirth;


But oh! each visitation
Suspends what nature gave me at my birth,
My shaping spirit of Imagination.
For not to think of what I needs must feel,
But to be still and patient, all I can ;
And haply by abstruse research to steal
From my own nature all the natural man--
This was my sole resource, my only plan :
Till that which suits a part infects the whole,
And now is almost grown the habit of my soul.




VII


Hence, viper thoughts, that coil around my mind,
Reality's dark dream!
I turn from you, and listen to the wind,
Which long has raved unnoticed. What a scream
Of agony by torture lengthened out
That lute sent forth!
Thou Wind, that rav'st without,
Bare crag, or mountain-tairn, or blasted tree,
Or pine-grove whither woodman never climb,
Or lonely house, long held the witches' home,
Methinks were fitter instruments for thee,
Mad Lutanist! who in this month of showers,
Of dark-brown gardens, and of peeping flowers,
Mak'st Devils' yule, with worse than wintry song,
The blossoms, buds, and timorous leaves among.
Thou Actor, perfect in all tragic sounds!
Thou mighty Poet, e'en to frenzy bold!


What tell'st thou now about?
'Tis of the rushing of an host in rout,
With groans, of trampled men, with smarting wounds--
At once they groan with pain, and shudder with the cold!
But hush ! there is a pause of deepest silence!
And all that noise, as of a rushing crowd,
With groans, and tremulous shudderings--all is over--
It tells another tale, with sounds less deep and loud!


A tale of less affright,And tempered with delight,
As Otway's self had framed the tender lay,--


'Tis of a little child
Upon a lonesome wild,
Not far from home, but she hath lost her way:
And now moans low in bitter grief and fear,
And now screams loud, and hopes to make her mother hear.




VIII


'Tis midnight, but small thoughts have I of sleep:
Full seldom may my friend such vigils keep!
Visit her, gentle Sleep! with wings of healing,
And may this storm be but a mountain-birth,
May all the stars hang bright above her dwelling,
Silent as though they watched the sleeping Earth!


With light heart may she rise,
Gay fancy, cheerful eyes,
Joy lift her spirit, joy attune her voice;
To her may all things live, from the pole to pole,
Their life the eddying of her living soul!
O simple spirit, guided from above,
Dear Lady! friend devoutest of my choice,
Thus may'st thou ever, evermore rejoice.

Samuel Taylor Coleridge
April 4, 1802

Just a quick snapshot of my latest look. A few weeks back, in a fit of pique, I took the electric clippers to my hair. It's actually getting a bit long now. Think I'll ask for an assist from DH this time, though.

I've gotten a few compliments on it when I've been able to go out. Nice, but not my main reason for cutting it this way. I like the fact that it hides the gray a little, and camouflages the fact that lupus and fibromyalgia have left me with about 50% less hair than I had a decade ago.

In addition, raging-feminist hair is a cinch to handle. No more brushing, hot oil packs, blow drying, etc. It's strictly wash and wear, which suits me to a tee these days, since lifting my arms over my head is one of my long lost abilities.

In keeping with my militant attitude, I've also given up makeup, bras, and pants without elastic waistbands. Life's just too short. Sure, I do get girly once or twice a year, but the days of spending more than a couple of minutes in front of the mirror are pretty much a thing of the past for me. I have more important work to do, and besides, who ever see me? Well, except the entire internets?

Because Women with disabilities are ...


This was inspired by the somewhat famous lengthy "because women's work is underpaid or unpaid..., etc" quote that ends with "and for lots and lots of other reasons, we are part of the women's liberation movement" (or, "we are feminists", depending on what version you're reading). You can read here.


It started on a leaflet by a student group in London and has since been reprinted on t-shirts, postcards, web graphics and lots of other things. The version below doesn't speak for all women with disabilities, nor does it represent situations which always occur but they all do, sometimes occur, and that's why they're here.


Because women with disabilities are marginalized by society for being disabled and for being women and if we advocate for ourselves we're called complainers and/or bitchy and/or negative and/or confrontational, and if we don't we get walked upon like doormats


...and if we use wheelchairs we are looked upon with condescending pity, and if we don't use wheelchairs it is assumed we aren't disabled and if we use wheelchairs but still have some mobility it is assumed we don't really need them in the first place


...and because if we have a psychiatric disability we are labeled crazy and/or lazy and/or helpless and/or stupid and if we don't want to take medications we're called non-compliant, and if we do we are called drug seekers or drug addicts


...and because when our physical disabilities are "invisible" we go to doctors for years and never get a correct diagnosis, but do get labeled malingerers and/or hypochondriacs or are misdiagnosed with psychiatric disorders we do not have


...and because when women with disabilities work we have to fight discrimination and "request" so-called accommodations which should already be in place and are condescended to by people who believe it some kind of miracle that someone who is disabled can hold down a job just like an able-bodied person


...and because if we are unable to work we are ostracized by societies which consider us useless since our lives cannot be defined by what we "do for a living", and when people meet us and ask what we "do", we are questioned as if we are more likely to be lazy people who just do not want jobs than people in poverty due to being unable to work


...and because women with disabilities are still having to remind the world that we exist, while healthy, able-bodied people are on television 24 hours a day on networks usually owned by men and because women's magazines and the fashion industry objectify all women's bodies but ignore the bodies of physically disabled women completely and because we do not see accurate representations of ourselves in books or on television shows or even on websites related to women's issues


...and because if we are women of color or bisexual or lesbian or transgender or pansexual and if we are poor and/or homeless and if we are survivors of childhood and/or adult abuse or sexual assault we have extra barriers to face, yet disability issues are often ignored by non-disabled people who fight discrimination against people in the above categories


...and because when we have to rely on government assistance to support ourselves, we are put through years of red tape to get and to keep poverty-level incomes and our names sit on waiting lists for affordable housing for years, because our governments provide little funding for social services programs


...and because to get any assistance at all from our governments we have to define, prove, describe, and prove again exactly what our disabilities are and how they affect our lives to a system that is based upon the assumption that there are more healthy people on the planet faking disabilities for fun or just for the heck of it than women who really are disabled and would not waste time and energy applying for assistance we did not actually need


...and because women with disabilities who need public transportation often still cannot get it because it is not accessible to us and the programs that do exist for para-transit often require us to request transportation two days or a week before and give the exact times and addresses of our destinations and when we want to leave and when we want to go home, and even after that we are often left waiting for hours before the transportation ever gets there so we are unable to go anywhere spontaneously like people able to use public transportation can


...and because women with disabilities who drive cars but do not look like the stereotype still used by our societies to define all disabled people, we are chastised for parking in handicapped spaces even though we have permits for them


...and because when we use wheelchairs but still have the ability to walk sometimes people ask us what we have a wheelchair for and/or assume we do not really need it and/or ask us who it is really for even when we are alone and it is obviously for us


...and because women with disabilities are at a higher risk risk than healthy and able-bodied women to be abused and sexually assaulted in a world where violence against women is already an epidemic


...and because when we are housebound and are abused by family members who we live with because we are not able to live on our own, we are told by domestic violence programs that we do not qualify for assistance because the people who abused us are not our spouses or lovers, and there are no shelters in the United States specifically for people like us who never had the physical ability to get a spouse or a lover in the first place but still have been abused as adults


...and because women with disabilities who do go to homeless shelters or domestic violence shelters or sexual assault crisis programs often find out that the staff who are otherwise very helpful have absolutely no understanding of disability issues


...and because we still have (primarily male) doctors who tell us if we are educated about our disabling illnesses that we must be hypochondriacs and/or tell us our disabilities do not even exist and to just go home and get some rest and avoid stress and wait to die, when they do not know how to adequately treat our illnesses and are not willing to learn


...and because women with disabilities who go to gynecologists for health care often find that the examining tables are not set up to be accessible for us and because women with disabilities who use oral contraception or the birth control patch or injections still have little information on how they might interfere with many other medications we take because the information does not exist since the research has not been done


...and because most medical students are still male, and medical schools are still run primarily by men and most medical texts are still written by men, and because illnesses that primarily occur in women and often disable us are still not well understood by many doctors, are often incurable, and are not researched nearly enough since what research that does exist is underfunded and the male-dominated industry of Western medicine still does not view disabling diseases that occur primarily in women to be much of a priority


...and because many of us take medications daily which will have effects on us we will never know about because no research has been done on how these medications affect women's bodies, since it is thought that protecting our reproductive organs is always our biggest concern in life and a reason to keep women out of medical studies even though the male-dominated medical industry never bothered to ask our opinions about that


...and because women with disabilities who go to emergency rooms are still having their needs ignored, are still verbally abused, dismissed, condescended to, and mistreated by doctors and by nurses and by emergency technicians on a regular basis, since we use emergency rooms more frequently than non-disabled people and since our illnesses are often not widely understood, and since women in general are still assumed to be more likely to feign medical problems than men are due to the misogynistic culture we live in which labeled disabled women with "hysteria" for many years


...and because women with disabilities still have to remind otherwise progressively-minded people about our accessibility needs, and sometimes we find that fellow activists who are healthy and able-bodied and working towards social change, seem to think the the social changes necessary to include women with disabilities in their groups are not really necessary and are actually inconveniences to the other activists who care about equality for people in general but apparently forget that we are people


...and because women with disabilities still end up homeless or living in situations that are detrimental to our safety and/or health due to the inexcusable lack of affordable housing for people with our income levels, even when we live in one of the wealthiest nations on earth and because information on affordable housing is often hard to find, not easy to understand, and not designed to ever get to women who are bed bound or housebound or whose disabilities are neurological or psychiatric and because we had to seek out such information from other women with disabilities when we did not get it from government agencies which are supposed to provide it


...and because women with disabilities who are housebound often live in extreme isolation and there are few programs to help us get the assistance we need at home and programs that do exist are under-funded and have long waiting lists and extensive application processes and strict eligibility criteria designed to exclude people more often than to help us and some of us never get the assistance we need in our homes


...and because women with disabilities who are isolated are at a greater risk for situational depression and suicide


...and because women with disabilities are still being confined to nursing homes and long term psychiatric facilities against our will be governments that would rather institutionalize their citizens than assist us in leading independent lives since it is economically cheaper for them to lock us up in cages


...and because we still can't get accessible, affordable health care of any kind but men running our governments can spend billions of dollars on militia to wage wars on other countries where more women are disabled by weaponry paid for by our governments


...and for lots and lots of other reasons, we are feminists with disabilities fighting for our rights.



This is an essay or rant about why women with disabilities need to fight for our rights, and why some of us, as feminists with disabilities are fighting for our rights. This describes many ways in which women with disabilities are still facing obstacles, stereotypes, discrimination, and other social barriers today, and how we have to fight for our equality. This is based upon a famous quote on why women are feminists fighting for women's liberation which starts, 'because women's work is unpaid or underpaid'....


This version is specifically about women with disabilities. This mentions many ways in which women with disabilities are mislabeled, stereotyped, categorize unfairly, ostracized, marginalized, and treated as less than human in society today, even in the year 2003. To change the world and make it an equal place for women with disabilities to live, many problems mentioned here need to be addressed."


source: http://womensstudies.homestead.com/becausewomenwithdisabilitiesare.html

Got my Fantasy Film today from ArtGlitter. This stuff is too much fun. I whipped up a batch of lupus/fibromyalgia awareness butterfly ribbon lapel pins. Will post them up on Etsy eventually. The scanner doesn't capture the beauty of this product. It's iridescent, and I added glitter and Swarovski crystals to glam them up. The ribbons are made from ArtGlitter's Fantasy Fiber. This stuff is a blast to play with. Just a tough from the iron fuses it together. A heat gun makes it bubble and crinkle. I can imagine spending a lot of time playing with these two products. It could easily become an obsession.

My little brother asked me that question after following my Twitter tweets for a while. How could I have not mentioned that?

The explanation is simple. Both lupus and fibromyalgia affect the brain, and I've evolved into a total space case.

The spoon theory of lupus was authored by the lovely Christine Miserandino of But You Don't Look Sick. It got shortened to spoonie, and many spoonies on Twitter end tweets with #spoonie to make it a searchable term on Twitter Search.

So what's a spoonie? It's someone who has an invisible illness, such as lupus and fibromyalgia (those are just personal examples... there are many invisible illnesses). We look just like anyone else. That makes it difficult for "normals" to understand why we need accommodations. Although we look perfectly healthy, we may need to use a wheelchair, a handicapped parking spot, a cane, or other tools. We may be too exhausted to keep up with standard social conventions. We may have difficulty with memory, with speaking, with being able to perform efficiently at work sometimes. We may need to rely on government assistance, being unable to work at all.

You can't tell these things by looking at us. You may wonder why you see me walk into the grocery store on my own feet, and then grab one of the scooters. You might get impatient if we give you a blank look when you talk to us. We may strike you as unintelligent or lazy. We are not. We want to work. We want to be able to play with our kids. We want to walk without assistance, go out to the movies, return your calls promptly, and remember why we put the TV remote in the fridge. We simply cannot.

We did not ask for this any more than someone struck with polio or cancer asked for it. We are not lacking in moral fiber. This is not a personality defect. We are, in fact, ill, even if we do not look sick. There are many more of us out there than you would believe. Most of us want our privacy about our health, the same as you. We are not always forthcoming about how much pain we are in, how weak we feel, how hard our daily lives are. We may make light of our disability, but that does not make it less real.

OK... much later. I had to take some deep breaths. I was getting a bit emotional.

I've had a couple of total strangers give me personal advice. Very serious personal advice, like "leave your husband because he said XYZ to you", and "accepting that there's no cure for lupus/fibromyalgia means you're giving up on life". I know these people most likely mean well, and they didn't intend to insult me. Goodness knows my own smart-ass remarks can be taken the wrong way.

I know that I appear to be an open book, but like anyone else, I don't tell the whole story online, ever. I do not believe anyone does. I protect the privacy of my family. Also, my writing is, of course, only one side of the story. I may make a comment that Mr. Fulano acted like an ass, but I can't read his mind. I'm sure he thought the same of me.

My photos don't show how dirty my house is. I don't post pictures of myself looking really, really sick. I'm human, and I have feelings, fears, and other messy emotions. I deal with them by using humor, sarcastic wit and stoicism, but that's not the whole picture.

Feel free to debate with me, but keep it light, keep it courteous, and for heaven's sakes, use your emoticons. I invented them for a reason. If you get to butting heads with me in earnest, I may charge you with being the village idiot. Hmmm..."Idiot of Frog Hollow". That kind of has a ring to it. I may have to change my title.

Enjoy life. Don't worry about me. I'm alive and doing fine.

Wow, did I get off topic, or what? That's a spoonie for you. I wish I could blame it on the drugs, but I'm not on any anymore.

This is a silly book. I'm not saying it doesn't work. It works like a charm, to be honest. It's like voodoo, it's so scary effective.

Somehow I ended up with two copies of this book. That's lupus/fibromyalgia fog for you. I can't unload them on Amazon because there are almost 4000 used copies for sale.

Here's my proposal. I will send this book to you, absolutely free. Just click the PalPal button to send me the postage (either $2.58 via media mail or $4.95 priority). It's the first edition hardback, in good condition, albeit missing the dust cover. Read it. Let me know what you think. Don't hesitate to let me know I have the wrong end of the stick entirely.

First come, first serve. I will remove the button once this has gone. If, by some chance, someone else pays before I can do so, I will of course send the money back.
If this turns out to be a fun exercise, I may release a few more books into the internet wilderness.

P.s. If you want me to send it overseas, email me and I'll let you know how much it costs to ship it and create an invoice for you.

Shipping

Media Mail $2.53Priority Mail $4.95

These lovely ladies are in the queue to have their glamour shots done and be pimped out at Frog Hollow Creations.

Click on the picture for a closer look. Go ahead! Don't be shy.

I have to admit, I'm going to have some trouble parting with the green-eyed crone. She's my favorite. Her head is made out of a leather button I inherited from my mother, and her iridescent breasts are also vintage buttons I picked up somewhere. The quick photo doesn't do her justice. She's definitely ready for her closeup.

P.s. If you want me to send it overseas, email me and I'll let you know how much it costs to ship it.

Mailing Options

Media Mail $2.58Priority Mail $4.95

Finally got around to creating a mascot for Frog Hollow. Need to add him to my banner. I've never been much of an artist, despite my teenage delusions. I've gotten much better at drawing this particular version of a frog, having had to redo him multiple times due to various FAILS. Sharpie pen, oil pastel, kraft paper, and scrapbooking paper.

Having lupus has changed the way I look. This picture was taken the morning after my family went bowling. Not only was I totally prostrated by exhaustion, but exposure to the black lights they turn on after 9:00 p.m. at the bowling alley aggravated my butterfly rash. It didn't even cross my mind that I was receiving concentrated UV rays until my son asked if the lights would make me sick. That kid is always looking out for me.

You can see that the medicine and enforced inactivity caused me to gain quite a bit if weight. I've gained even more since this picture was taken.



Here's a picture taken about a year or two earlier for comparison. Skinny, no rash. Granted, the skinny came from a reaction to Plaquenil that left me nearly anorexic. I had to have assistance just going to the bathroom, I was so weak from not eating.

Yes, my skin is always pasty white. On top of a genetic mutation I inherited, going out in the sun makes me nauseated, dizzy, fatigued, and triggers a major flare. I remember hearing stories about ancestors who had trouble with the sun. I think I descended from cave dwellers, or maybe vampires.

Right now I'm back on the Tramadol, a medicine I loathe to the depths of my soul. We've lost our income and health insurance in the last few months, so like a good recessionista, I've cut back on luxuries.

Last fall, my doctor and I hit upon a combination of medications that works for me, nearly restoring me to my pre-illness state, but it's way too expensive for me to pay for out-of-pocket when we're living hand-to-mouth. I'm nearly out of the pain pills, but resolved not to buy any more unless DH refilled his diabetes and high blood pressure meds first.

Tramadol, while it lessens pain to a tolerable level, has horrible side effects. It's a major contributor to the mental fog that has enshrouded me of late. I've had a bad case of The Dumb that has left me frustrated and nearly at my wit's end.

I'm frightened thinking about the return of that much pain, but I'm hoping it will light a fire under someone's backside. I dearly wish I were able to get a job. I'm trying to sell some items online to generate at least a little income to supplement unemployment, but it's subject to my energy levels. If I'm not online much in the coming weeks, it will be because I'm either asleep, or lying under my heat lamp, trying to cope.

I've been playing with MorphThing again. Here are pics of my husband and I, taken at our early morning best.




Aren't we adorable? (I admit, it's an older picture taken before I got this sick.)

I morphed them together to see what the computer thinks our kids might look like. Here's what it came up with.






Well, maybe when my son grows up and gets a sex change. Here's what he really looks like. Both my kids got my extremely fair skin and my hair.



Here's how he acts sometimes. I feel like maybe evil Gollum sneaked in late one night.





Just kidding, BTW. My kids are abnormally fantastic. Not perfect, by any means, but they bring me unimagined joy. I don't know how we got by without them years ago.

more animals

Finished my needle felted bear last night. Didn't get a chance to take a picture until today. I really wish we had a decent camera. The one one DH's phone just doesn't do him justice.

He was surprisingly simple to make. Took me about two hours, total. I started with the instructions in the tutorial at Owning Alpaca and then altered him based on the Bumble Bear at Living Felt.

Gave him to DH for an early V-day present.

Finished knitting my Knucks today. They work up very fast on size 4 needles. About six hours invested in total, including embellishment. The pink is leftover homespun merino/silk blend that I've had batting around for ages. The reddish embroidery is the result of one of my Navajo Plying experiments, of unknown wooly content, and the purple is ancient unlabled acrylic fuzzy stuff from the my closet floor.

Halfway through stitching the letter U, I realized the witticism "Drugs Help" has nine letters, rather than eight, as I'd originally believed. Apparently, the drugs aren't helping as much as I'd hoped. Glad I wasn't in the middle of getting my knuckles tattooed for real!

I ran the embroidery across the palms as well which adds significantly to the warmth.



These are so simple and quick, I may bang out another pair tonight. Or I may just haul my sleepy frauenhinter off to bed.