Episode 69: Can't Afford Life-Changing Hepatitis C Treatment

Every day on TV, ads for Hepatitis C treatments promise me a new life.

I contracted Hepatitis C in 1980 when given a transfusion during a D and C--a procedure to scrape out my uterus. I'd been bleeding heavily since giving birth to my first son, and when Dr. Townsend saw me in the recovery room after the D and C he said there'd been placental material inside, most likely from Jason's birth but also possibly from a miscarriage. In any event, I bled a lot and was given two pints of blood from the Red Cross blood bank in Washington, DC. In those days, blood wasn't tested for AIDS or Hepatitis C because neither disease had been identified or named until AIDS in 1983 and Hep C in 1989.

Luck of the draw, I guess.

I need to get this publication!
https://www.opensocietyfoundations.org/publications/hepatitis-c-treatment-price-profits-and-barriers-access

Recent studies have found that most Hep C transmission is due to medical procedures, not risky behaviors. For more information on this, see this article in Internal Medicine News.

Throughout the years I've had this blog I've been searching for answers to the weird symptoms I've had, many of them neurological. Only recently have doctors found HCV, the Hepatitis C virus, replicating in the brain. That probably means my white matter/demyelinating disease, and probably my diagnosed hypersomnia--which though called idiopathic is now known to originate in the brain--are due to the decades large quantities of HCV that have been circulating in my blood. Despite this, I have never been treated.

I have HCV genotype 1a, the most difficult to eradicate. In the past, the only treatment was some 49 weeks on Interferon and Ribavirin, and the treatment frequently led to flu-like symptoms, depression, and a bunch of other problems I didn't want to invite into my life. While I was working full-time, I couldn't even think about doing that. I was already so run down with my hypersomnolence, lack of energy, and host of other diagnoses that I was pretty sure the treatment would kill me, and I was still alive (barely) without it, and being alive is better than being dead. I think. Even after going through that treatment, the odds of clearing the virus were only 50 percent.

Now, of course, brand-new treatments are available, and one is highly effective against genotype 1a and is administered over only a couple of months rather than nearly a full year. And I'm on disability now, so even if it does knock me on my ass I can absorb that for a brief period of time. I went to my gastroenterologist, though, and he informed me of the following:

• Insurance companies will not approve treatment unless I have evidence of liver disease. My liver has held up pretty well through all of this, though I'm going for a biopsy in the morning. It has been something like 10 years since my last biopsy.
• Treatment for Genotype 1a costs $45,000.
• If I am liable for 20 percent, that means I'll owe close to $10,000.
• I am on Disability and have a three-hour-a-week part-time job, so my income is just barely over the poverty line--but is OVER, so I am not eligible for any state or federal assistance with the cost of drugs that are making some CEOs out there very, very, very rich.

Let me be straight: I don't begrudge the poor people their subsidies. I am damned close to poor, and it is damned hard. I know what it's like to be comfortable; I grew up in a middle-class home; my father was an electronic engineer and my mother a homemaker. I know the difference. 

Blaming the poor and begrudging them the help they get from the rest of us just distracts us from the main problem: the fact that the wealthy do not pay their fair share of taxes (thanks to Reaganomics) and the other fact that far more of our tax money goes to the war machine and sketchy crony contracts than to help the poor, old, and sick among us.

Meanwhile, if I lived in Australia, the treatment would be paid for by my government, no matter how I contracted the disease.

So here's my dilemma now. 

I really do want to have this disease treated. I really do want to feel better. I would love to be able to go back to work full-time and make some decent money so I could fix up my rapidly crumbling home and pay off my current bills and be able to enjoy my last days without constant financial worry on my mind. 

But $10,000?  How the hell am I going to do that? I don't even have good credit, thanks to my then-employer's terminating me when I became too sick to teach full-time anymore. I had to declare bankruptcy and am slowly working my way back to half-decent credit--but who the heck is going to give me a loan?

This is why universal health care needs so badly to be instituted in this country. There is no reason for drugs to cost that much when pharmaceutical CEOs are bringing home gazillions of dollars every year in salaries and bonuses. There is no reason for insurance companies to limit their coverage when insurance CEOs are bringing home gazillions of dollars every year in salaries and bonuses. 

We are a stupid people, we Americans, to let this go on. We keep electing puppets into Congress who don't have our interests at heart--not the tiniest bit. And we are paying for our stupidity with our very lives. When are we going to wake up? I did my part--I voted for Bernie. I just hope he is the beginning of a wave of awareness in this nation. We the People need to take back health care from the vampires sucking our blood--even mine, chock full as it is of a deadly virus.

Episode 68: Hepatitis C and Parkinson's Disease Linked--Could This Be the Answer?

I hate writing about my health all the time, but I guess I want a record of what I've gone through in case it helps anyone else. Maybe it will help my kids someday to understand why I have had so little energy and have fallen so far in my life, from a promising career as a college English professor some seven years ago to my current status as poverty-stricken, disabled fifty-something slug.

I've tended to downplay my hepatitis C since being diagnosed early in the 2000s after giving blood for the very first time. I don't like needles, so I'd avoided giving blood my whole life, but while teaching college-level classes in the local high school I was talked into donating by my over-achieving kids. I wanted to help them reach their goals as Red Cross volunteers. And I subsequently received a letter from the Red Cross telling me my blood had been tested two or three times, and it was positive for Hepatitis C.

Sometime between 1979 and 1983, the years my boys were born, I was given two D and Cs (procedures to scrape out the uterus) at Columbia Hospital for Women in Washington, DC. I kept bleeding heavily after the birth of my first baby, so my OB/GYN suggested the procedure. The first one didn't work, so they did it again. I was given two pints of blood in a transfusion during one of the procedures. This was the pre-AIDS era, and Hep C didn't even have a name yet (and wouldn't until 1989). Blood was not screened then, and IV drug users were the most common blood donors since they could do it for money.

I had no clue that I had this disease until some two and a half decades later. And now, it has been--yikes!--close to forty years since the virus began circulating in my veins. Thus far, my liver has proven strong. My last liver biopsy--admittedly some six or seven years ago--showed no fibrosis, the first step toward cirrhosis and potentially liver cancer that can happen due to infection with Hep C, or, rather, HCV, as the virus is known.

My genotype (1A) is the most difficult to cure. In the past, treatment required 49 or so weeks (nearly a year) of interferon injections as well as daily oral doses of ribaviron. Interferon has nasty, sometimes debilitating side effects. Not only that--the grueling treatment is only effective in about 50 percent of those with my genotype. Pretty lousy odds when having to potentially give up a year of one's life. As I have been my sole means of support since my husband and I split in 1985, I never felt I could afford the time off to be treated.

I also hoped that treatments would improve and, lucky me, that has happened. There are now several options to treat my genotype with oral medications over six to eight weeks, and the cure rate is 98-99 percent.

Just in time. And, truly, I am lucky. I now have a chance to feel better. I realize my trying to find the cause of my problems may all have been simplified if I'd just attributed them to hepatitis C. The thing is, the HCV virus's neurotoxicity has only recently been recognized.

The eminent Dr. A., my local neurologist, told me c. 2013 that I have some sort of neurodegenerative disease, but he couldn't say for sure which one it might be. "If you had white matter disease in your cervical spine," he told me, "I would say you have MS." I don't, though. I just have white matter lesions all through my brain. What are they? Could they be the Lewy bodies of Parkinson's?

Not too long ago, I wrote about the possibility that my problems could be due to Parkinson's Disease. What had struck me most about an interview with Linda Ronstadt, the songbird of my youth, was her saying that she totally lacked motivation to do much of anything other than chill out and read books. Those weren't her exact words, but the symptom struck me as so very similar to the ones I've endured for the past five years or so. (See Episode 64.)

It's as if a switch just won't turn on when I need to shift gears (sorry if that's a mixed metaphor, though they are both mechanical :) ). I get stuck on one mode, whether that be lying on the couch watching TV when I need to sleep, or sleeping itself. Although I dearly love my friends and the times I've spent out on the town with them, I rarely feel motivated to go out with them these days. Even when I plan an evening out, I have a hard time actually leaving the house.

It just seems monumentally difficult to get up, take a shower, get dressed, and go out. I can't tell you how many times during the holidays I let my friends down when I couldn't get together or go to a party with them. And these are the best friends on the planet. I have to be sick if I can't muster up the energy to hang out with them.

I rarely shower or even change clothes nowadays. I know this sounds disgusting. And, no, I'm not depressed. It's just so damned exhausting. And I'm lucky; I don't get "BO." I've confirmed this with Honey. And so the idea of washing my hair, holding my arms up long enough to do that, just wears me out. I've come out of the shower faint and out of breath, with barely the strength to dry off with a towel. The idea of having to do all that gets harder and harder as time goes by, so most of the time I just don't bother.

Rapid Eye Movement (REM) Sleep Disorder is another early Parkinson's symptom that I've experienced over the past year. I recounted those experiences in my previous PD post. Fortunately, the episodes stopped happening after that until one very recently when I actually awoke punching myself in the face! The dream made sense at the time, but I can't remember now what it was.

A few other problems I have that could be attributed to early Parkinson's: increasing episodes of anomic aphasia and paraphasia, difficulty hand writing anything, stiffness and slow movements, frequently feeling faint upon standing, a fall and concussion two years ago while walking and talking at the same time--strangely enough, this is a complicated task for the human body, and doing so with Parkinson's or other brain disorders may lead one to fall, as I did (see "Talking While Walking: Cognitive Loading and Injurious Falls in Parkinson's Disease," among others). A few of my other symptoms include heat intolerance, increasingly stooped posture (so unattractive!), recent onset of chronic constipation, urinary urgency and incontinence, and more.

Every one of these cognitive changes listed on the Northwest Parkinson's Association site applies to me BIGTIME:

• Slowed thinking speed;
• Word finding difficulty;
• Trouble with multitasking;
• Difficulty organizing complex tasks, steps, or instructions;
• Memory problems.

Added to that list is frequent errors in writing that I frequently do not catch--this is a big change for me, an uber-accurate typist and compulsive proofreader in my former life ... though I hope I'm still the "word sorceress" Honey called me recently (I love it!).

More often than not these days, I'll begin talking and my words will jumble up--as if my mouth has not yet caught up to my brain, or vice versa. A previous episode of The Mary Dell is devoted to the frequently humorous and always fascinating word scrambles I've come out with lately.

All of these signs and symptoms point to a degenerating brain--quite the scary thing for a gal always rather smug about the quality of hers.

On the other hand, the diagnostic criteria for Parkinson's includes four cardinal signs, and I can't say that these clearly apply to my muscle and balance symptoms, so perhaps this STILL doesn't explain my neurodegeneration--and none of the possibilities are exactly keen.

Last month, I finally met with my gastroenterologist, who will look into treating my Hep C after he does a few other tests relating to my digestive problems--specifically, a colonoscopy in early February. He informs me, however, that insurance companies will not pay for treatment unless one is showing signs of liver degeneration.

In fact, I've been having some of those signs recently. My liver enzymes were elevated for the first time recently. My digestive problems have increased. And bile was found in my urine when it was tested recently for a urinary tract infection--and that's a sign of liver problems.

Now also, lucky me, I say ironically, because it really is true--I can show even more potential deterioration from the HCV virus, thanks to Medicine's recently linking Hep C to Parkinson's. Yes. Lucky, lucky me. And I will feel lucky indeed if, in fact, the treatment turns my life around again, at least enough that I can enjoy some reasonably healthy years left with my Honey and my kids, not to mention the chance to reach my hopes and dreams. I've thought for some time I've got something degenerative that will take me away sooner than should be--but maybe, just maybe, treatment will stop that process in its tracks and give me some good years left on this planet.

Here are two separate studies that show "significant" evidence linking Hep C and Parkinson's:

Hepatitis C Virus: A Risk Factor for Parkinson's. "In conclusion, our study demonstrated a significantly positive epidemiological association between HCV infection and PD and corroborated the dopaminergic toxicity of HCV similar to that of MPP(+)."

Hepatitis C Virus as a Risk Factor for Parkinson Disease: A Nationwide Cohort Study. "We conducted a large nationwide population-based study and found that patients with HCV exhibit a significantly increased risk of developing PD."

Will curing the hepatitis C arrest the Parkinson's Disease? Whether or not I end up having PD, I guess only time will tell for those who do--I see that a clinical trial on this very question is being conducted. No matter what, getting rid of a damaging virus circulating in the blood has to be a good thing.

___________

N.B.  It is now 2021, and I've been cured of Hep C for some five years.  I can say that most of the symptoms of Parkinson's that I list here have cleared up. I don't think Parkinson's goes away once it starts, so clearly I didn't and don't have it, thank goodness.  Just goes to show how debilitating Hep C can be.  Nevertheless, the articles listed here do show that this link exists, so maybe this blog entry will help someone.

Episode 67: On Adult Children with Mental Illness

I walk a fine line on this topic because I don't want to violate my son's privacy. I only identify him as J., and I haven't identified my own last  name, let alone his (as they differ), so I hope this episode of The Mary Dell Show respects both the wonderful person he is as well as others who have struggled with the devastating pathologic conditions of the mind.

And, because I do share this blog with a couple of closed Facebook groups I'm in (for hypersomnolence, etc.), I'll just say that J. is very lucid these days and has, until quite recently, had his issues very well controlled on his meds, and during that time has given me permission to write about his plight.

Of course, as biology has shown in recent years, particularly since the advent of the functional MRI (fMRI), "mental illness" is truly biological illness. And, as in any illness, psychological factors come into play as the condition manifests itself.

Examples of functional MRI images of structural brain changes in schizophrenia from Dialogues in Clinical 
Neuroscience at http://www.dialogues-cns.com/publication/understanding-structural-brain-changes-in-schizophrenia/

Episode 66: A Familiar Interest, NOT Obsession - Mary Dell MD (Medical Detective) and the Neurolobitch

Okay, okay, okay.

I know my loyal viewers (all zero of you) will know that I do tend to wax diagnostic when it comes to my health problems. So much so that, for quite a while, I was convinced my neurodegenerative symptoms (with numerous periventricular white matter lesions on MRI, hyperreflexia, mild myotonia on EMG, and other neurological signs) might well be caused by myotonic dystrophy.

Given my family's physiologic resemblance to the facies of persons with myotonic dystrophy, the logic of a DNA test seemed, pardon the pun, a no-brainer, but apparently not to the neurologist aka neurolobitch I saw at Johns Hopkins Medical Center's Neuromuscular Clinic about a year ago. (For more on that miserable experience, see Episode 44. I still haven't named her "for real," but I'm sorely tempted these days.)

As anyone with a "mystery disease" knows, it's frustrating when a definitive diagnosis is not found for the profound, disabling changes to one's body and, at times, spirit--though I do my utmost to ensure that I don't also succumb to depression, no matter how hard some days can be.

Add to all that the fact that I worked (when I used to be able to work) as a medical librarian, among other careers, and in those years gained expertise in researching medical topics for physicians, other health professionals, and the public.

So, excuse me. I think an occasional foray into the possible causes of my day-to-day miseries is hardly obsessive. Of course, tell that to said Dr. Neurolobitch at Johns Hopkins.

The fact is, my once-subtle neurological symptoms may have started very early in life, beginning at 18 months with severe dehydration to the point that I was in quarantined intensive care for three full days. The dehydration had been caused by a severe virus during which I'd apparently puked and shat myself clean through.

Viruses are possible causes of multiple sclerosis and other neuro diseases, so perhaps that was the culprit.

Popping up again at 5 years old when diagnosed with amblyopia due to strabismus, a common eye condition in children that is caused by neuromuscular weakness. My cross-eye, or squint, is not overly noticeable, thank goodness, but I am legally blind in my left eye (God preserve the right!).

You can see my strabismus (cross-eye or "squint") here--
it's getting worse as I get older!

Hinting at itself here and there throughout my childhood, characterized by frequent sick days from school and undiagnosed ADD, another neurological condition. My early report cards, as well as many of the issues I dealt with as a kid, are textbook for ADD, and I've been diagnosed as an adult. I have a fairly full-blown case, actually, and it's been exacerbated in recent years, probably from the white matter lesions in the ol' noggin.

Rearing its ugly head again when happily pregnant with my first child at 19 years old and unexpected complications that could be attributed to neurological problems (and are commonly found in pregnant women in myotonic dystrophy, which initially led me down that path) nearly cost me my pregnancy and my firstborn son, who was born prematurely, given a 50/50 chance to survive his first 24 hours, and himself developed within a few months a severe neurological condition, craniosynostosis, along with a cerebral hemorrhage that left him partially paralyzed from the time he was an infant. (J. is a miracle story in himself; that is a story I need to write--but I'm hoping he'll write it himself, now that he's an amazing 35-year-old man.)

My second pregnancy three years later was also difficult, though thankfully full-term, with odd problems such as an almost total inability to eat, very little weight gain, and the most debilitating headaches I've had since (though I had migraines in my 40s as well).  Second-son A. was born with a couple of issues and developed a few more in childhood, including ADD.

Remaining mostly silent through the rest of my twenties--but who would know when in that one decade I experienced the birth of said beautiful son J. at the age of 20, dealt with his myriad physical problems, including two neurosurgeries at 7 and 9 months of age, had my second beautiful son A. at the age of 23, dealt with his health issues, went through another neurosurgery for J. when he was 5 and I 24 years old, lost my dad to a sudden heart attack when I was 25, separated from (and eventually divorced) my husband also when 25, went through my mom's breast cancer and mastectomy beginning a year or so later, and then lost my mom to liver and pancreatic cancer when I was 29.

The only significant neurological issue I can think of during the joy of my twenties (SARCASM, Sheldon!) was the onset of a very weird sleep problem I only recently identified as hypnogogic hallucinations. These are true hallucinations that happen as one is falling asleep due a criss-cross in the brain states of wakefulness and REM sleep. They are associated with narcolepsy, which I actually qualify for based on a Multiple Sleep Latency Test (MSLT) administered a couple of years ago; however, my diagnosis is idiopathic hypersomnolence (IH) based on that same test. The test has you sleep for a while during the day, then wake for a bit, then sleep, then wake, etc., and the amount of time it takes for you to fall asleep during those naps is calculated. Anything less than 7 minutes is diagnostic of either narcolepsy or IH, and my average was 4 minutes.

Fortunately, the hypnogogic hallucinations, which were absolutely terrifying (men breaking into my room to do me harm, and they were just as real as anything I've seen in true wakefulness), stopped after a couple of years. They began the night Mom died, though that first one was actually very comforting and arguably NOT a hallucination but a visitation from my mom, who came to the side of my bed and told me not to worry, she was fine. The ones that followed, though, were beyond frightening.

In my thirties and early forties, I began experiencing a profound lack of stamina. I honestly thought it was because I was getting "old" (funny in retrospect, now being fifty-something!). My co-workers told me they worried they'd walk by my office and see me dead at my desk--that's how bad I looked (and felt). I attributed my fatigue to my rather full load--I was a single mom of two beautiful, challenging boys, a summa cum laude college student cum part-time secretary cum program associate/coordinator cum graduate student cum grant writer cum graduate student in a second discipline cum academic reference librarian cum medical librarian cum English professor cum world traveler (Europe, Mexico, India).

After sending a Christmas letter out during my thirties, I received a reply from a friend who told me my letter sounded like a "cry for help." It probably was. But I would not be denied. I wanted it all. No doubt, stress has played a huge role in my failing health.

One day in 1996 a nurse in my office took my blood pressure and told me to go to the Emergency Room immediately, where I clocked in at 183/113. Oh, it got much worse over the years, but that was a startling number for someone who'd always had normal pressure.

My uncontrolled hypertension would take a big toll on my life from that point forward, resulting in numerous hospitalizations, heart problems, and a series of medicine cocktails that would keep my pressure fairly normal for a while until they didn't, and then it was out of control. My last semester teaching, it was running 200+/120+ much of the time.

It took thirteen years for the reason for this uncontrolled hypertension to be discovered. Is it any wonder I don't always trust what even the best doctors are telling me?

After all, son J. had been UNdiagnosed by his pediatrician even when I'd raised concerns about his head size and his refusal to use his left hand for anything, including reaching for toys. Trying to reassure me, I guess, the good (ahem) doctor told me, "Oh, he's just a right-handed baby with a funny-looking head."

Um. WRONG. A second opinion revealed J.'s craniosynostosis and left hemiparesis and was followed by those neurosurgeries and years of physical therapy.

I repeat:  Is it any wonder I don't always trust what even the best doctors are telling me?

So, I was almost fifty when I finally learned the cause of my hypertension--an adrenal problem known as hyperaldosteronism that actually begins with a problem in the brain. A problem, in fact, in the hypothalamus, which for some time I've theorized is the culprit in many of my problems. (See Episode 46 for more on that pesky hypothalamus.)

In my hypothalamus, according to my docs at NIH, an abnormal secretion of the hormone CRH begins a cascade of disasters that results in my adrenals becoming hyperplastic (too big, with too many cells) and secreting too much of the hormone aldosterone, which leads to intractable hypertension, heart problems, and god knows what else. I'd never been happy with the "essential hypertension" B.S., so finding the cause was good if a little late for my heart and kidneys.

The hypothalamus, by the way, is known to cause many of the problems in multiple sclerosis (MS), which my neurologist says he'd diagnose me with if my MRI had shown lesions in my spinal cord and not just the confetti he'd found in my brain. However, I've since learned you CAN have MS without spinal lesions, so maybe, in fact, that IS my mystery disease.

Also during my forties I'd learn I have Hepatitis C, obviously not a neurological problem, but one I'd acquired quite possibly due to these underlying neurological problems when the placenta after J.'s birth did not fully detach from the uterus and led to severe bleeding--just one of the weird problems during that pregnancy that are, in fact, listed as common in pregnant and birthing moms with myotonic dystrophy, as well as other neurological conditions. I was given two D and C's (uterus-scraping procedures) during which I needed extra pints of blood (transfusions) and acquired the Hep C virus in those early 1980's days before the blood supply was screened. Thank God it wasn't HIV.

No doubt the Hep C doesn't help matters, neurologically or otherwise--but I hope I'll be a candidate for all these new treatments coming out.

Finally (I hope), in my forties and early fifties I would be diagnosed with my arguably most severe health problems, which I've described on The Mary Dell Show ad nauseum, so I'll just quickly list them: cardiomyopathy, kidney disease, and this mystery neurodegenerative disease (among other, somewhat less serious conditions).

The heart and kidney issues aren't surprising, given the years of astronomical hypertension I've endured. And, by the time my neuro problems were diagnosed by the eminent neurologist Dr. A (the antithesis of Dr. Neurolobitch, by the way), I wasn't surprised. I'd done hours and hours of research on my signs and symptoms by then and was certain many of my problems originated in my brain. 

All in my head, yes. But not made up, as Dr. Neurolobitch implied during my consult with her.

My point in recounting all this is that I now believe my neurological issues began much earlier than anyone, including me, had thought--from the time I was a baby in quarantine with a nasty virus, perhaps.

Another point that I cannot help but bring up is the way Dr. Neurolobitch treated me during the 40-some (if that) minutes she consulted with me. Given the numerous correlations of my health problems (and some in my family) with those of myotonic dystrophy, I don't think a DNA test for that condition was out of order. In fact, I'd found medical guidelines--the Bible for docs these days--that pointed to exactly that.

In addition to that good (ahem) doctor's skepticism about every single thing I told her, she informed me that my neurological exam was completely normal--this despite highly reactive reflexes the neuromuscular fellow in the room commented on several times.

My local neurologist had already found hyperreflexia, so Dr. Neurolobitch's ignoring this calls into question every single other thing she "didn't" find during her exam.

Dr. Neurolobitch held firm to her NO DNA TEST decree, so that I am now paying, or would be paying if I could find the name of the credit bureau to which my bill has been referred, for having the DNA test done on my dime, despite having no income at the time due to my disability and now drawing a meager but life-saving amount each month from Social Security.

It was no skin off the doc's perfect white teeth for her to order that test, and I've seen forums in which that test was, in fact, ordered for patients at Hopkins with only hints at myotonic dystrophy, but she was far more interested in being RIGHT and putting me down, given my medical librarian theories, than she was in following proper guidelines.

Finally, to appease me that day, Dr. Red Queen (as she is known in my previous episode on that visit, in reference to my series on today's medical system--Down the Rabbit Hole) said she'd send me for an EMG (a painful test with needles stuck into your muscles) that she was certain would be normal.

Wasn't she surprised when that test DID indicate mild myopathy? Even with that, she still wouldn't order a DNA test for me, which is why I still owe money for one.

Although Dr. Neurolobitch Red Queen did end up being right about the myotonic dystrophy--and thank God, since the main reason I wanted that test was that I was concerned about my sons and nieces, since the disease is hereditary, her supercilious attitude was way out of line.

I dunno, I think curiosity is an important attribute in a diagnostician. Instead, this woman had mocked me from the moment she walked in the, an experience unlike any I've ever had in my many, many doctors' visits over the years. The most overt was when I told her about the cranial neuropathy I'd been experiencing--a weird, electrical impulse shooting down the side of my nose and across the top of my teeth--and she cut me off, saying "Yeah, yeah, yeah."

I shit you not. I was as shocked as you are. But it happened.

After being the object of her obvious, shrivelling skepticism about that and everything else I said to her, and then, adding insult to injury, telling me my neuro exam had been normal, I asked her,

"Well, why then did my neurologist say he'd diagnose me now with MS except that I have no spinal lesions?"

The look on her face was priceless, but she had a ready answer: "I've been consulted about myotonic dystrophy. I have nothing to say about that."

Really?

No matter what my referrals might have been for when I've seen other doctors at Hopkins, they've all at least attempted to find out what might be the cause even if it wasn't exactly what was thought at first.

Even the best (and most gorgeous) diagnosticians go down a few closed alleys now and then before arriving at a correct answer. It's called the scientific method.

Now, HERE's a diagnostician!
And don't point that thing if you're not going to use it, Dr. House!

Any patient is due basic respect from a physician. I'd be fine with deleting every snarky reference to Dr. Neurolobitch if she'd admit she'd fucked up when she saw me.

In fact, I'd say the Red Queen had more to learn from my visit to her than I did.

I doubt, though, that she's the type of person who could admit she SUCKS at taking histories and treating patients as human beings.

So I'm a medical librarian that came up with the theory of myotonic dystrophy and was wrong.

Well, guess what? Dr. Neurolobitch's perfect arc of a life that led her to an important position at Johns Hopkins didn't prevent her from also being WRONG--about my hyper-reflexes, my myotonia, and my diagnosis of degenerative neuromuscular disease.

And wrong about me. I am not the attention-seeker, time-waster, and malingerer she obviously believed me to be.

Maybe I'll never have a definitive diagnosis. I've seen enough posts about patients seeking diagnoses, particularly in neuro conditions, to know that mysteries are not always solved.

However, after reading that MS, in fact, does not HAVE to include lesions in the spinal cord, I think I'm just going to say I have MS from now on.  I certainly have many, many of the signs and symptoms, and it's easier than saying to someone, "Well, I have some kind of neurodegenerative disease that no one can find the name for."

Simplifies things, doesn't it?

And, while labels can be damaging, anyone with a mystery disease will tell you that a diagnosis is hugely helpful.

I, at least, remain curious, but I'm also resigned. Whatever is happening isn't going to be cured, whether it's MS or myotonic dystrophy or any other neurodegenerative disease. It just would be nice if someone cared enough to help me find out what it is. Is that too much to ask of the so-called best physicians in the nation? Is it too much to ask that they, too, be human?

From now on, I'm having my docs refer me to the University of Maryland Medical System rather than Hopkins. As physicians in a teaching institution, maybe they will demonstrate enough curiosity to help me find out what I can call this thing that is taking away my life, day after day.

___________________________

P.S. Curse you, Blogger!!  I had a much pithier version of this episode published that I lost, and there's NO WAY to get previous versions. Talk about frustrating! Time to start composing in a word processor. What a pain.

Episode 65: Healing Nature, Ferns, and Fairies

Healing happens when we ingest certain foods and medicines, but many other factors come into play when a person is fighting for his or her health, as have I for some time.

Healing, however, does not necessarily come from what we put inside our bodies; healing can come from without. My wonderful massage therapist Hania is a case in point--after an hour under her ministrations, I feel like a new woman.

In my case, though, the greatest sense of healing comes to me while in the forest. Yes, many of the plants I've identified in my woods and yard do have medicinal properties, but in this case I'm talking about healing on an aesthetic and spiritual level. And this is where ferns and their allies come in.

Ferns are not edible except as fiddleheads, the newly emerging sprouts in the spring, and only two or three species of ferns produce palatable fiddleheads:  the ostrich fern, lady fern, and, arguably, bracken. Eating fiddleheads of other ferns may make you sick.

But ferns are healing to me without their ever touching my body, much less going inside it. A woodlands filled with ferns and their allies, moss and Solomon's seal and Jack-in-the-Pulpit, to name a few, is not just a forest; it is a sanctuary.

Although there's no lake in my yard, my woods remind me of one of my favorite lines by one of my favorite authors in one of my favorite essays--one I can't decide whether or not to teach this fall given its "old-fashionedness" (however, this is also a point in its favor).

In "Once More to the Lake," E. B. White describes an early morning on the lake he'd visited as a child. Of moving through the waters in his canoe, E. B. writes that he is "keeping close along the shore in the long shadows of the pines . . . being very careful never to rub [my] paddle against the gunwale for fear of disturbing the stillness of the cathedral."

That's how I feel about my woods. A cathedral with a ceiling painted not by Michelangelo but by the filigreed limbs of maple, basswood, and black oak.

I have been unaccountably blessed in life to have purchased my modest home, my "cottage," as I refer to it, which sits on the edge of a forest. With its northeastern exposure, my wooded mountain slope produces countless members of woodlands species.

It is here, while I sit under the green hardwood canopy on one of the huge sandstone boulders scattered across my property, that the stresses of hypertension, cardiomyopathy, and neuromuscular/degenerative disease fall away from me. No longer am I Mary Dell, individual human with compromised vigor and health; I am a part of the forest, this vital ecosystem, this magical place where fairies still roam.

I breathe in the ancient air, knowing my landscape of ferns and moss is one of the oldest to exist on this planet. I breathe in the rich scent of humus--that moist, nearly black soil resulting from the slow decay of yearly leaf litter, fallen from trees that in autumn turn my little mountainside gold and red. I breathe in the eons of this planet in this sacred place. I breathe in the healing that comes from nature's undiluted elements.

"My" woods--highlighting hostas; I will post a new
photo filled with ferns and moss soon! You can see
a few fern fronds on the right here, though.

I'm thinking that "nature therapy" needs to become more emphasized for the chronically ill--for anyone who is in need of healing, in fact, whether mental or physical. The idea formed (though I realize now it's not an original one on my part) after watching a Facebook video in which several firefighters grant the request of a man dying in a hospice. They roll his gurney with him, gaunt and pale and looking hundreds of years old, lying there, from the pavement to a wooded path, and then they take him through the woods. The man's dying wish was to be outside among the trees and flowers and underneath the blue sky, not a bright white ceiling with blinding hospital lights.

Where would you rather die?

So that got me thinking. It's a crime, really, how we close up oldsters in ever-smaller spaces that have little to no access to the wild, wonderful outdoors--or even a nice, tame park. I'm struck when watching older television shows, and some more current ones from the UK, in which persons trying to heal spend time in sanatoriums or other spaces that include expanses of grass and gardens and woods--and the sick persons can be found outside on a bench, or even sitting in a wheelchair, not stuck in bed in a tiny airless room.

Nowadays, sick equals small, supposedly sterile places. And that's just wrong.

In fact, I found a Web site, naturetherapy.org, that describes the very approach I envisioned. It's somewhat annoying that they have trademarked the term "Nature Therapy," which seems so simple it shouldn't get a trademark, but so be it. At least the healing arts are on to this wonderful approach.

The healing aspect of the forest doesn't end when I leave it. My healing also comes from learning all I can about the plants in my woods and anywhere else. While it's certainly possible to find healing in simply sitting outside and soaking up the sunshine and perfumes and microscopic things-we-know-not that check the degenerative processes (I have to believe), another way of connecting with and becoming part of "nature" is learning as much as we can about it. (I use "nature" in quotation marks because we are ourselves a part of nature, of course; we cannot truly be separated from it--but we humans do a very good job of removing ourselves from our Mother Earth with structures and pavement and ideas favoring urban life and man's "primacy" over everything else on this blue marble.)

Jean-Jacques Rousseau, the French philosopher whose ideas helped spawn the French Revolution (and the U.S. one, actually, through English writers who took up his ideas), called botany "the salutary science," or the "remede dans la mal" (remedy for illness). That was in the 1700s, for heaven's sake! Why have science and medicine taken us so far away from our valuable relationships with the plants that surround us and through which our planet, and we humans, breathe?

Well, so much for philosophy. No doubt you'll hear more of these ideas on upcoming episodes.

In the meantime, here I will mention the ferns I've found on my property, which may or may not be of interest to you, Dear Viewer--but call this my virtual plant collection. Rousseau also recommended this nearly lost diversion; gathering and pressing flowers and plants was a pastime of his while in exile from France for his revolutionary ideas. This is a gentle activity that can be done even by the likes of me, as weak as I've become in the last few years.

And so I've started my pressed plant collection by attempting to preserve fern species in my yard. I'll post photos if they turn out.

Ferns are notoriously difficult to identify. Since I haven't positively identified all the ferns in my yard, I'm listing some that may well grow there, based on descriptions and photos from a wonderful Web site, Discover Life.

I'll put a question mark next to those I'm unsure of and, if I make a positive ID, will then take the question mark off. Obviously, all of this is far more useful to me than you, so feel free to go on to another episode of The Mary Dell Show!

Ferns Found on My Property

Eastern Hayscented Fern - Dennstaedtia punctilobula

Glade Fern? - Diplazium pyncocarpon

Goldies Woodfern ? - Dryopertis goldiana

Intermediate Woodfern? - Dryopteris intermedia

Interrupted Fern ? - Osmunda claytoniana

Lady Fern?

Marginal Woodfern ? Dryopteris marginalis 

Mountain Woodfern ? Dryopteris campyloptera

New York Fern ? - Thelypteris noveboracensis 

Northern Maidenhair Fern - Adiantum pedatum

Rock Cap Fern - Polypodium virginianum - I discovered this darling little fern on a boulder behind my house and transplanted a small amount to a rock in my woods-edge garden. It's done extremely well and has even spread a little.

Spinulose Wood Fern ? -  Dryopertis carthusiana

Virginia Chain Fern ? - Woodwardia virginica

Ferns I've Found In the Area (Not in my Yard)

I am more certain of these IDs because they were impressive finds, and ones that don't look much like others.

Lycopodiella appressa - It took me a while to identify this strange-looking plant. Little did I guess it's a type of fern (well, fern-ally, actually)! I found it in the Savage River area near Honey's summer place on the River.

Hanging Clubmoss, Creeping Cedar,  - Lycopodium digitatum - (Actually, a fern ally, not a fern per se) - This is a creeping plant with needles or leaves (I'm not sure which) that look like cedar. This grows very close to Honey's summer place on the Savage River. He tells me of a man his mother had seen for many years, a sort of mountain man, who knew "everything" about the woods. He would collect this pretty plant and make wreaths of it for Christmas.

Ostrich Fern - Matteuccia struthiopterus - This is a real beauty, and a Very Big Fern. Ostrich fern fiddleheads (early sprouts) are one of the two species that are palatable when sauteed.  I've seen this fern growing in many places in Garrett County, Maryland, one of the state's three Appalachian counties and the county next to mine.

One day, on my way to teaching English at the community college, I stopped on the roadside and tried to dig up one of these oversized ferns, but I couldn't dig deeply enough to actually uproot it! They like very moist areas, even growing in streams, and I got my feet wet that day to no avail!

Honey's sister has a huge swath of very large ferns in her yard, and she bequeathed us some when she and her husband thinned them out. I don't think they're ostrich ferns, however, because they don't have that huge, meaty root. A few of these to-be-identified large ferns ended up over at the cottage, and I can't wait to see them take off. If they're happy there, I should have a nice swath of them as well, since I planted them in a moist, shady place similar to their home in Honey's sister's yard.

The woods behind my home are filled with ferns, and I've been transplanting a number of them into the yard proper. Every moment I spend in those magical, fairy-filled woods makes me stronger inside and out.

Episode 64: Still Truckin' On, Part Deux -- Some Days, Not So Much

If I sounded as if I'm highly productive in life in Episode 63, this episode is the reality check.

I've been in bed, mostly asleep, for the past several days. That's the joy of chronic disease. On top of the hypersomnolence, lack of motivation is a serious aspect of my condition and, as medical research has demonstrated, a part of most if not all neurodegenerative diseases.

I watched an interview with Linda Ronstadt on YouTube the other day.  She was diagnosed with Parkinson's Disease (PD) a year or so ago and, sadly, can no longer sing at all. She says her attempts sound like shouting, if they can be qualified at all. So sad. What a songbird she was.

Ronstadt also mentions severe lack of motivation as an aspect of PD, which my quick PubMed/MEDLINE search confirmed. Lack of motivation--exclusive of depression--is also found in Alzheimer's, MS, and other neurodegenerative diseases. Since I know I have some sort of neurodegenerative disease but don't yet know exactly which one, this confirms what I've known all along--this damned lack of motivation isn't because I'm lazy or depressed.

I generally don't feel sad, though I have occasions when I do, particularly when my energy is utterly zapped. But I don't stay in that state for long; before long, hope and happiness and productivity return.

Medical science has concluded that this "apathy"--lack of motivation, not necessarily lack of caring--is not due to psychological stress (though surely that adds to it) but is part and parcel of living with neurodegenerative disease.

The technical explanation for apathy in neurodegenerative conditions is explained in Behavioral Neurology of Movement Disorders, Volume 96, edited by Anderson, Weiner, and Long, "Across diagnostic groups, apathy is related to functional disturbance of the anterior cingulum, an area with reciprocal connections with limbic and frontal cortices and basal ganglia structures" (2005).

Our brain's white matter (as opposed to gray matter) is made of connective fibers that "transmit information among neurons within or across different brain regions" (Neuroscience Research Australia). My latest MRI shows far too many white matter lesions in my brain, which correspond to the disconnect there among the regions responsible for motivation.

In other words, the parts of my brain responsible for motivation just ain't talking to each other anymore. The chain is broken. I'm fighting not some personal failing but the dysfunction of my brain. This is a fight to the death.

As my previous episode made clear, I hope, when I am both mentally and physically able to do so, I keep myself productive. Most of that time is spent baking, sewing, or embroidering--quiet activities I've always enjoyed. I'd like to spend more time reading and writing, but unfortunately I spend an inordinate amount of time on the Internet browsing topics I enjoy, a time suck that can be done comfortably in bed while propped up on pillows.

I'd also like to spend more time hanging out with friends, and hiking, and going dancing, and a lot of other activities I used to regularly enjoy.

But in my days of "down time," even the Internet doesn't call me. Lying in bed and staring at the wall is sufficient, if mentally uncomfortable because I really hate doing that, on those days.

And so I fight those times, when I'm able to. When I can't, I submit. And hope I can fight through it another day.

I'm planning to take a class this fall, as I'm very close to a PhD as far as coursework goes. I don't know if I have it in me for the long haul, which will include getting re-certified in a foreign language, a major book reading list and oral exams on the readings, and, of course, the dissertation.

And I can't manage more than one class per semester, hardly a full-time load. But if I'm able to do so, I'd like to keep going. Deadlines imposed on me are helpful, or at least used to be. I've lost my ability to meet some of my deadlines. It's difficult anymore to be a "self-starter." But I do force myself most days.

Then there are days like the last three, when I've been able to do nothing more than lie in bed or on the couch. Yesterday, my diet consisted of one pack of Ramen noodles and, much later, a Stoeffer's Cheddar Potato Bake frozen dinner. Not enough to keep body and soul alive, that's for sure, but I not only didn't feel like fixing anything, I didn't really feel like eating anything.

Oh, I drank a good bit of ginger ale, too--all this sleeping is leaving me dehydrated, as my pee unclearly shows. I've become addicted to ginger ale--at least it beats my old addiction to Pepsi, since there's no caffeine in it. I know the purists will tell me the sugar is what's making me so sluggish, but, hey, I need some pleasure in life.

Speaking of pleasure, I've figured out that if I manage to actually have sex (an increasingly rare occurrence these sad days), I sleep pretty solidly for a couple of days afterwards.  Two weeks ago, after a fiesta, I slept for 31 hours straight; last week, after similar rapturous activity, 24 hours straight. As I've discussed before, my stamina is so bad that sex is now leaving me weak and out of breath almost before we start.

And, obviously, for quite a while in the afterglow.

But we must truck on.

We must not give up on life.

So, most days I force myself. No, not to have sex every day--though Honey and I went at it, often multiple times a day, for the first five years of our relationship. Hey, maybe that's what wore me the hell out!

Anyway, most days I force myself to do something productive. And, perhaps, like with sex, when I finish doing that productive thing, my body goes into recovery mode. Which means sleep. And lethargy. And total lack of motivation. As I describe it to Honey: "I'm in total slug mode."

I don't want to be there. It's not a pleasant place to be. But when there, nothing pulls me from the fugue. Nothing compels me to become vertical rather than horizontal.

Fortunately, to date, this state is temporary. Eventually, perhaps when my body finally feels as rested as it can be, I do turn to something productive. Eventually, I'm even in the mood to have sex.

The best possible thing for a person with chronic disease is a partner who is understanding. Honey knows this is out of my control, and he is as patient as a saint. Of course, I turn him over to his cyber girlfriend(s) when I'm in this state--and, frankly, I'm grateful for their standing in. Or lying in.

But not all of us have the gift that, somehow, the Universe has bestowed upon me in the form of a nurturing, loving, patient partner. Therefore, I recommend a fine article, "Brain Fatigue 101" (including that caused by neurodegenerative disease), by Linda J. Dobberstein. I especially like her recommendations for easing that fatigue, many of which involve communing with nature. I find a day in my woods and gardens does much, perhaps more than anything else, to relieve the exhaustion and "apathy" I feel far too frequently.

What we need today is more time spent in nature, even when very sick. I can't think of anything that eases the mind and soul better than that.

I might brag about my accomplishments, but make no mistake about it: I'm using every bit of energy in my body just to get through my bad days. I've had no greater challenge in life than staying positive and productive in the face of chronic disease.

And I know exactly what I need right now: a day in my woods.

Episode 63: Still Truckin' On -- Pursuing Interests to Forget About Health Problems

I'm tired of discussing health problems on The Mary Dell Show. I never intended it to be all about my declining health, but that issue has dominated my life and thoughts for the past couple of years, so I've defaulted to that topic.

Problems continue, including an ambulance ride to the Emergency Department earlier this month thanks to breathing, heart, and blood pressure problems and even more disturbing signs of losing my language abilities due the neurodegenerative stuff going on--but I'm BORED with all of that!

For now, I'm putting health problems out of mind by concentrating on hobbies and interests I've always had but haven't had much time to pursue. I still don't have a lot of time in any given day since I sleep an average of 15-17 hours in a 24-hour period, but I want to make my waking hours worthwhile whenever I feel up to it.

First is sewing. I learned to sew in eighth grade Home Ec at Rollingcrest Junior High School with Mrs. Poole. Mrs. Poole was a cool teacher who showed us how to do stuff and then would let us go at our machines while she worked on her own projects. First, though, she had shown us how to do our steps so well we could work fairly independently.

She let us talk about anything as long as we were working, and we quiet ones listened to the fascinating commentary of one girl who just loved to talk. I remember her saying how great the song "Benny and the Jets" was--a surprise in those days when our school was somewhat divided on racial lines, and this gal was black--and that Elton John would be on Soul Train. I remember thinking how cool all of that was. Meanwhile, Mrs. Poole worked on a big, fluffy, fringey white jacket. She was that good.

I then began making a lot of my own clothes. It was the Seventies, when peasant dresses and hippie clothes were popular and homemade clothes were valued. When I was nineteen, I made my wedding dress and four bridesmaids' dresses, and I stopped sewing for decades. I'd had quite enough, thank you.

"Paisley Callie"--Given to my Honey's
grandniece, with FUN "Paisley Jungle" 
fabric by Kaffe Fassett.

I loved my wedding dress pattern, from Vogue. And the part I loved most was the lace overlay to the bodice and the unlined lace sleeves with bell cuffs and tiny pearl buttons for closure. I'd asked my sister, a bona fide hippie in those days, to be my maid of honor and told her she could go out and find a dress she liked. She came back with a dress that shocked me a tad. I'd pictured some sort of frothy bridesmaid-y frock, but she'd found a navy-blue gingham halter dress with an embroidered collar.

A BEAUTIFUL dress.  A dress that would be exactly perfect for a wedding if I were having one today. But back then, a mere 19 years old and, at the time, rather a traditionalist, I was getting married in a very conservative church I'd given up all my sense to join. Halter dresses were a definite no-no. However, this was my wedding, and if my sister wanted to wear the dress, so be it.

I hadn't planned on bridesmaids, but my hubby-to-be had four younger sisters, and it seemed a shame NOT to include them as such. So I then had to seek out a pattern similar to my sister's dress, and I made them lighter-blue gingham dresses with eyelet collars. They also wore cute white floppy hats, though my sister wore just a flower in her hair.

Close-up of "Paisley Callie"

In the midst of making those dresses, I thought, "I'm going to look wrong with my long sleeves with everyone else in sleeveless halter dresses." I'd just finished my sleeves, with their pretty bell cuffs with lace-scalloped edges, though I hadn't yet added them to the bodice or sewed in the pearl buttons.

And then I thought, I can't use these sleeves. So I made facings and wore my dress sleeveless instead. It was lovely, but I did miss those sleeves! I still kind of do to this day, though the marriage is long, long over. I should have just put them on the dang dress! Silly, silly me.

Today, it seems, a resurgence in appreciation for homemade and handmade items has occurred. To assuage my blues over never having had a baby girl (though I wouldn't trade my two baby boys-now-men for anything!), I started making toddler dresses. Or baby dresses. Depending on whether or not a one-year-old is toddling, I guess. I chose that size because I love that time when babies are just learning to walk. And these little garments take a lot less time to whip up than a full-sized dress.

"Garden Frock" - with WONDERFUL
fabrics--I just wish I had the
names of the fabrics and designers, but
I don't. That top fabric is to die for,
but that was the last of it for me,
and I can't find it on the Internet.

Close-up of "Garden Frock. I ADORE the top fabric--
if you look close, you'll find bumblebees and dragonflies.

The amazing thing is that the machine I'm using is a little Kenmore my father gave me for Christmas in eighth or ninth grade. It's still running like a top, and I've only had it professionally cleaned once. Sewing makes me feel closer to my father. He enjoyed watching me lay out fabric and cut out pattern pieces, which I had to do on the living room carpeting to have a big enough space. Dad would sit in his chair in the evenings with his beer or martini and watch this process, my least favorite part of sewing. One Christmas, either before the sewing machine or that same year, Dad gave me a good set of sewing scissors. "I've watched you wrestle with those dull scissors all this time," he said, "and it's time you had a proper pair of scissors!"

What a good present. The best presents are those a person chooses based on a need they've seen in your life--and I'll never forget that thoughtfulness on Dad's part. And I learned immediately to value a good pair of scissors. It's all in having the right tools, and my dad, an engineer, understood that.

"Happy Flowers." This was so fun to make.
I also contrasted these fabrics on a purse
I made a few years ago--both are now
available on Esty at my shop,
Woodlands Cottage.

Every time I lay out and cut out my fabric, I think of my dad. It makes the process a lot less tedious. And every time I sew on that little Kenmore, I think of him. Yes, my mom liked my sewing, too--she was over the moon about an apron I made her for Christmas one year--but this is one area in which I know my dad was proud of me.

In my little town is Mountain City Traditional Arts (MCTA), a store that features the arts and crafts of local folk, mostly old-timey products such as quilts and dulcimers and crockery. Our university's Appalachian heritage program runs the store, and the person in charge is a friend who is a Sociology professor at the uni. She "liked" the photos of my dresses on Facebook, and I said I'd like to make some "old-timey" dresses out of ginghams and calicos, etc., as well as some bonnets and head kerchiefs to sell at the store, if she thought they would, and she replied, "I know they'd sell!"

And so I've been whipping up these fun little frocks and headgear for the past few weeks, trying to get some inventory together for my display. The store is on hiatus for a few weeks, so I have a little time.

"Cherry 'n' Checks." I adore cherries on baby
dresses, so when I saw this pink cotton homespun,
I knew it would be perfect for my traditional
arts line, and it is! This dress has plastic
cherry buttons, a crochet flower hem, and
a full slip. Currently on sale on Etsy at my
shop, Woodlands Cottage, but will be put
 in a local store when it re-opens.

So here are a few of my dresses for the traditional arts store. I used old-fashioned fabrics such as gingham and homespun, but I also updated them a bit for babies today. I think they're adorable, if I do say so myself! A few of these dresses were made before I thought of selling them at MCTA, so they are with more modern prints. I had put them on Etsy, but I think I'm going to send them all down to the store. Sewing is a "traditional art," no matter what the fabric!

Along the way, a brilliant idea occurred to me. Our town gets tourists due to a scenic train that stops here. Folks wander into town, and I'd imagine MCTA is one of the stores they "hit" most. But what if young parents forget to bring something to put on their babies' heads on a sunny day? Baby bonnets might just sell--but even better might be little head kerchiefs for tender little heads! So I've been working on both, and will also do kerchiefs for girls and women.

"Gingham Flowers." I am in love with these gingham-look buttons, and they finally arrived after I'd ordered them on E-Bay. I love
how they look on this little dress!

"Gingham Flowers"  I used an "old timey" gingham
updated with fun, fresh flowers.Tiny eyelet trim 
on hem and cute plastic gingham-look buttons.
Available on Etsy under Woodlands Cottage.

My model is a bunny that once belonged to
one of Honey's kids--I need to send the
kerchief to his niece to try on her new baby--
Gotta get the size right before churning these out!

However, posting the dresses to Facebook has left me indentured (in a good way) to two friends--one asked me to make her a garden party dress, which I'm in the midst of doing, and the other asked me to make dresses for her six-year-old nieces. Tomorrow, she and I will go to the fabric store to pick out patterns and fabrics--SO much fun! And the other friend picked the most fun, fabulous peacock fabric--I'll post a photo of that and hopefully a photo of the dress, with her in it, preferably, when it's done!

I've missed working on my toddler dresses, to be honest--but I want to do this other work as well. I've never had to adapt a pattern because my body was always "off the rack"--tall and slim. (Alas, the slim part is not so true anymore.) Sewing patterns were made for me. But this is a skill I've wanted to develop, and I appreciate my friend's giving me the opportunity to do so without a lot of pressure going with it. I'd planned to charge her $20 for my labor (dirt cheap, I might say)--but I've decided to just give her the dress. Buying the patterns and fabric is not cheap these days, and I'd brought a 20 percent off coupon that had expired the day before, so we couldn't use it. I'll just let her be my walking advertisement--IF it turns out!

Kerchiefs are traditional Appalachian headgear,
but I've updated the concept with some fun fabrics.
Each kerchief will have contrasting/coordinating
fabrics and will be reversible.

And traditional bonnets, of course! These are ALMOST done.
I'll probably turn out a few of these with fun fabrics, as well ...

A decade or so ago, I made dresses for my nieces. They both loved to play dress up and become characters in their books, and they were going through the Little House on the Prairie" series, so I made my older niece a prairie dress and bonnet. I then followed up with a colonial dress and bonnet for my younger niece. Aren't they adorable? [photo to come]

Many moons ago, I'd also made a prairie dress for one of my ex-husband's sisters, long before the wedding, actually. She wanted to learn to sew. She was about 11, and we made a pretty prairie dress she wore for a play. She later gave me the dress, so I'll post a photo here soon!

I also made both nieces nightgowns with matching ones for their American Girl dolls. A friend told me I should think about making doll dresses as well as the toddler dresses--though American Girls are really for an older set.

I decided to do a line of "Appalachian Girl" doll dresses to sell at MCTA, and I will put on the sales tag that I'll make a matching girl's dress if contacted. I researched American Girls and was sad to see that Kirstin, the prairie girl doll, had been discontinued. Boo! But that doesn't mean little girls can't imagine their dolls as girls living long ago on the prairie or in these Appalachian Mountains.

I've been doing a lot of crafts lately, but, with my blazing ADHD, I've had trouble finishing products. But I'm turning out baby dresses lickety split!  A few years ago, I did a line of purses that sold in a local arts gallery until it closed. I was proudest when a gallery owner from out of state purchased one of my embroidered purses. I'll post some photos of the purses, too. I came up with a fabric version of Van Gogh's Starry Night I'm particularly in love with. It used to be in a number of Etsy treasuries, but I'm no longer sure I want to sell it, so I don't have it on Etsy anymore. I have a few still hanging around, literally. I need to get those on Etsy one of these days.

So, I AM staying positive and being productive despite the daily trials of chronic illness--being short of breath and being hypersomnolent, among other fun symptoms.

But I've also decided I need to exercise my brain, since it's decline is the scariest part of all my symptoms. I've always had a good mind, and I don't want to lose it entirely. So I reapplied to my alma mater where I'd completed a Master's Degree in English and had completed a number of classes toward my PhD.

And guess what?  I've been readmitted, and I may only have three more classes to take to finish my coursework!  I was amazed I am that close, so it would be dumb not to finish it. I'll never have the stamina to teach full-time again, but even if I'm unable to teach a class or two in person I should be able to teach online. And having the PhD instead of just the Master's will really help in getting those jobs. I'd hate to lose all that I learned in the field until now.

I'm hoping exercising the brain will prolong its integrity and no do the opposite. If I can't handle the course work anymore, I'll give it up--but I do have to try.

So, there IS hope after being diagnosed with chronic disease, even neurodegenerative disease, and there's no reason to wallow (any more than you have to, and, yes, I do wallow when I have to). I try to get something productive done every day, and even if it's a small thing, I count it as a job well done.