The Thing About Shoes. -- 02/03/2018

posted Feb 3, 2018, 8:01 AM by Kathryn Simpson   [ updated Feb 4, 2018, 6:27 AM ]

"Someone has to die in order that the rest of us should value life more.
It's contrast."

-- Virginia Woolf*

We all know I love my metaphors. Well, I've had to change my metaphorical shoes again. My Caring for An Aging Parent shoes were replaced with Caring for A Dying Parent shoes. It's a thing that so many/too many/not enough people understand. The lengthy illness or injury of a person you love. The frustration of watching them struggle for health and breath and Life. The struggle to guarantee them physical peace while they seek their spiritual evolution. The quest to get them the best care. The fear of not doing enough. 

I'm a fairly realistic person and I never imagined it would be easy. Before he died my father was ill for a long time. That was heartbreaking (Screw you, Congestive Heart Failure!). But watching my mother's years-long apathy about her illness was absolutely hard. She was a very smart lady and I kept waiting for her to be similarly smart about her future and her diabetes. But as smart as she was, she was just as stubborn. She would either live or not live on her terms; a position I did not always handle well. I spent a lot of time very angry. I should have had more patience. I will spend the rest of my life wishing I had been more patient. Because she's gone now and I have to own that. 

Meanwhile, I must acknowledge it wasn't just the strokes and diabetes she had to battle. I believe depression played a bigger role. It's hard to care about your blood sugar when you're too depressed to want to live. And who am I to judge? But that's a blog for another day. 

Mom made her career in Hospice Social Work and her end-of-life wishes were no secret. She had a DNR for many years. As her illnesses (Dia-pression? Depressi-betes?) took their toll we knew there was a clock ticking. Again, a situation to which I know many people can relate. 

Through her last months we were fortunateI cannot adequately describe the care Husband showed. We had conscientious, diligent nurses and CNAs at Mother's nursing homeWe had amazing professionals from  Hospice keeping her comfortable while they cared for us, too. Mom's dear roommate held our hands and family, friends and friemly all stopped by with hugs and jokes and tears. We weren't alone. And in her lucid moments, when neither her pain nor pain management had her fogged, Mom could communicate that she was ready to die. That she wanted to join her parents and older brother and my father. I do not doubt her peace at the notion nor her desire to go. But as Summer waned in tandem with her strength I was struck by her body's ability to linger. She was physically miserable. The sweet spot between being medicated to her gills and consumed by pain was hard to maintain. She was often confused. Her confusion left her frightened. She wanted and was ready to die. But whatever and wherever is the bridge that spans the Here to the There, she couldn't find her way. 

It was terrible to witness, but more terrible was the fact I couldn't make it better. I asked every question I could to have rational expectations. I found a series of NY Times articles that helped me ask more questions. But I feared then and fear still that all my efforts to prepare and help only made things worse. One evening her nursing team needed to treat an aggressive new bedsore. This was going to suck, so I held Mom's hand and told her to squeeze mine as hard as she could. 

    "As much as it hurts, squeeze my hand that hard," I told her. "It'll be okay, Momma," I insisted. "It's okay."

    "It's not okay," she cried out. "It hurts!" 

My heart ripped into pieces, and she couldn't have been more right. It most definitely was not okay. All my stupid words did no good at all. I own that, too. Another lesson I've no intention to forget. Sometimes things are not "okay," and saying otherwise doesn't change the fact. 

I must also own that by the end I wanted her to go. I wanted her to achieve the peace and freedom she sought and in which she vehemently believed. Waiting for a dying person's discomfort to stop is an agonizing business for them and anyone watching. I have literally no idea how medical peoples and care givers do it on a regular basis. It cored me out. But at the same time, I am grateful for the opportunity to be by her side in that intensely vulnerable condition. She would have done it for me, I'm certain. To do it for her was an honor.

Mother died in the early hours of September 21, 2017. Thister and I were with her, as we had been in shifts for the previous days. Then she left this stratum and traveled to another, the details of which I can only speculate. My hope before her death was to keep her safe and comfortable and wrapped in love. My hope since is that we somehow did her justice. That we somehow fumbled our way to providing her the care she would have given to others. 

So again with shoes. Back to the ones for Life After Burying a Parent. We all end up with those at some point, so at least I'm in fashion.

Ba-dum-bump. Tssss! 

Now enough with the metaphors.

                                    The family back in the 80s.                                        On a road trip with Niece and Thister.


With her new Grandcats, 2013.

Letting me fuss.

*This specific quote is actually from the 2002 film The Hours, spoken by Nicole Kidman as Ms. Woolf. 
The concept, of course, can be traced more directly to Ms. Woolf herself within her novel Mrs. Dalloway. 

Pondering the Impossible -- 05/06/2016

posted May 7, 2016, 11:43 AM by Kathryn Simpson

A few years ago I penned a love letter of sorts to Mother’s Day and to my own dear Momma. You can read it here if you’re so inclined. 

I think about President Wilson and his gift-giving coup every year as I ponder what Mother’s Day present to arrange for the lady who gave so much to successfully raise my Thister and myself. She worked hard and was specific about our responsibilities as ladies and to members of our extended family and the human race as a whole. She led by example. She has always loved us with a fierce loyalty that was occasionally as suffocating as it was enriching. She set a bar so high I used it as an excuse to avoid tackling motherhood myself. She was and is Mother/Mom/Momma. Our own dear Sally. And we love her, I think, as much as she has loved us. We are each of us tremendously fortunate, and Thister and I are (along with Husband, Niece and Ex-Brother-in-Law) doing our level best to keep her safe as her years pass. 

It's hard, but certainly this situation is not unique to my family. Everyone reading this has, is now or will one day be in these same awkward shoes: The Caring for An Aging Parent shoes. I think we can all agree these shoes suck. 

Our arrangements have gotten more complicated recently as Mom’s health as waned at a faster pace. She's profoundly diabetic, as you may recall from another blog post awhile back, and the disease has only continued its assault on her physically and emotionally. It's a cruel irony that it has largely manifested itself in damage to her brain tissue. Our mother's razor-sharp wit and wicked sense of humor has dulled. The seemingly endless compassion and empathy for her fellow humans that cemented her skills in hospice social work has likewise ebbed. She doesn't feel good, for one thing, and she knows her memory and cognition are not what once they were. She is often childlike in her desires and mood. Like most sick folks (or folks in general, really) she has good days and bad, but watching her cognitive decline is insult to injury for her and for those of us who know her and love her best. 

Of course we know part of the reason Mom's disease has advanced as it has. As hyper smart as she's always been, she's also a little too smart for her own good. She denied advice from medical professionals to follow medical and physical regimens and believed she knew what was best. And she was wrong. Ignoring her symptoms and self-treating allowed her diabetes to ravage her system. And as it did so, it became easier for her to deny the care plans she needed. It became a vicious cycle as well as a goddamned infuriating and terrifying shame. I keep telling Husband, this is not the woman who raised me. This is not the Sally of my youth. If I could give her any gift tomorrow, it would be a return to that darling woman who provided tough love but tender care. Who was quick to laugh and quicker to hug. I would give her back her Sally-ness. But that is impossible.

While I watch the dementia sparked by Mom's diabetes develop, I find myself often paralyzed by doubt and fear about my own neurological situation. So I try to do what she did not. To keep on my feet. I try to keep moving. I take my crazy-expensive medications and hope my faith in medicine isn't going to kick me in the proverbial testicles. Because I love my mother and I want to be like her in so many ways. I want to make her proud. I want to keep certain Sally parts of myself healthy. But I don't want to be stubborn about my disease. 

I want to give her a Mother's Day gift of health and fortitude and healthy years ahead, but I'm afraid that's impossible. My heart breaks for us both. 

What a Buncha Jerks -- 12/3/2015

posted Dec 3, 2015, 11:32 AM by Kathryn Simpson

Like most people I know I've spent the last week in ponderance about human on human violence, and specifically the use of firearms in these events. You do even a little research on the Google machine and it gets pretty discouraging pretty fast. The numbers are all over the place, as is the rhetoric. Our questions boil down to why? Why would that person/group take that action against that other person/group? Three little letters and a squiggly mark that beg so much information we may never receive.

In our efforts to make sense of un-sense, most of us try to label or pigeonhole things into chewable explanations. We attribute violent actions to mental illness; religious ideology; racism; sexism; homophobia; poverty. I'm no scholar but it seems to me each of these (or any combination thereof) possible factors trace back to another small word: Fear. Four likewise small letters that can be the tidal wave of force behind any creature's action or reaction. But fear of what exactly? And I think that's the easiest of the questions we've been asking. I believe it all comes back to the fear of difference. Fear of a person/people/culture/behavior that differs from that with which we are comfortable. It's kind of a theme with us Americans, really, and it goes way back. We've been setting up fences between one another for just about as long as we've been squatters on this continent. For a load of people who came here from somewhere else because we wanted a fair shake and to be treated without prejudice, we sure dole out what we can't take. Some highlights:

(Being Irish, this is one of my personal favorites.)

(Oh. I'm also German.)

(And Native American.)

(But my hodgepodge ancestry is just a tiny example of the isolated.)

I hope you see my point. Regardless of our professed lofty ideals, I fear we are not The New Colossus our forefathers strove to be. In fact, our assorted cultures have been turning away from one another--dare I say trying to deny one another?--for too many generations to count. And why? Because we look different from one another, or pray different, or sound different or smell different. Because someone doesn't like what the other wants to do with their own body? Because one government was involved in a war on another continent and any person of that biology must be equally reprehensible? We need only look back a handful of decades to see the disaster of that mindset. 

It's honestly quite surprising that we've set aside our fears long enough to get together and populate this country so thoroughly. I suppose that can only be attributed to utopic communities where people take the time to work through or see passed that which frightens. Couples and families of mixed race/religion/politics exist all over the U.S. That is what still makes this nation a dream to many outside our borders. But I worry. If we continue to focus on building fences and turning away, how long until the isolationism of the past becomes so prevalent no one finds us a beacon? How long until it's the last century all over again? 

I have no answers, other than to adjust my sloppy habits of easy prejudice. To do so I may need to read and re-read Ms. Lazarus's poem on a daily basis until it soaks in and I, too, can be a mighty woman. Hodgepodge ancestry and all. 

Sunday Brunch Days -- 9/12/15

posted Sep 12, 2015, 11:07 AM by Kathryn Simpson

In my continuing quest to produce powerful fiction, I’ve left my job of the last two years to return to the relatively predictable world of the restaurant industry. I have to focus on writing, and since our move back to Missouri I've struggled to do so effectively. It's not entirely due to the job I've held, but that has been a big part. Meanwhile, there’s a great locally owned place half the distance from home and the general manager is a pal. Husband and I have been loyal customers over the years so when things came together and I was given the opportunity to return to waitressing/bartending/managing I felt it was a risk I had to take. It should be more reliably “part-time” than the other gig, and certainly more direct in its stressors.

When you consider I’m a person with occasional balance, vision and cognitive issues, the restaurant is definitely more of a physical challenge. I say “occasional” because though I am currently in remission for my Multiple Sclerosis, the disease’s ambiguity guarantees there are no guarantees. And that’s more than half the reason I’ve jumped at this chance. I have to stay active. I have to continue to push myself beyond my comfort zone and stay strong and mobile. I have to force my brain to function efficiently in high-energy situations. It is my belief—and some MSers may disagree—that if/when I stop pushing to continue these practices I will be more likely to face a relapse. Or, should I have a relapse triggered by who-knows-what it will be more difficult to recover and regain my independence and my physical and mental activities. My big episode in 2010 not only led to my diagnosis, but also knocked me so far on my butt I still have not fully recovered. That’s no hyperbole and I never want to be that sick again. So while I may truly want nothing more than to curl up in the fetal position with the cats and watch re-runs of Criminal Minds, I’m going back to a gig that regularly requires its participants to go 6 hours or more without sitting down even to use a toilet. My feet and my back hurt, but my “step count” has increased dramatically!

Anyhoozle, part of my returned commitment to the biz also has me returning to that bane of the food server’s existence. I speak of the thing I’ve sworn off half a dozen times before in my restaurant career: Sunday Brunch.

I’m being a hypocrite here, as are most waiters and waitresses when they bemoan the brunch shift. We ALL love a good Sunday brunch! Comfort food of all variety served in a cozy setting with satisfying coffee, a zippy Mimosa or spicy Bloody Mary. Crispy bacon. Something bloated with carbohydrates and demanding syrup…. What’s not to love*w?

So on the way to my first Return-To-Sunday-Brunch shift, it occurred to me how much—for me—it’s actually a perfect gig. I’m a morning person. I like to offer people a reason to smile right at the beginning of their day. I get a charge from the challenge of making a crabby person even slightly less crabby because I anticipated a request before it could be vocalized. I must say, almost everyone has a bit of crab in them on Sunday mornings, and not just guests. It won’t surprise you to hear me say most folks in the restaurant industry do not share my appreciation for “the morning after.” Restaurant people in both Front and Back of House work very hard all week. Most also work very hard to unwind at the end of the week. Which means Saturday nights are often a blur of drinks and gripes and vents and more drinks. To take away their Sunday morning recuperation draws ire, to say the least. But it’s also "the business." And I think it’s entirely worth the effort. 

Putting out a really good or even great Sunday Brunch elevates a restaurant’s standing in the community. It requires specific team chemistry. Getting up extra early and opening a place when most of town is still in their pajamas feels like being the first one up on Christmas morning (which I usually was). Some folks go to temple, mass, chapel or Sunday school. Waiters, chefs and dishwashers go to work. And in the hour(s) before the doors are opened, while gravy is whisked and coffee percolates, a restaurant is not unlike those religious ceremonies.  People behave differently when they dine on a Sunday morning. I find they tend to be a little more thoughtful. Not thoughtful like tipping-30%-on-toast, but thoughtful like wow-I'm-here-and-my-temporary-problem-is-whether-they-serve-sweet-tea. I think Sunday morning dining out reminds folks we are fortunate to have First World Amenities. And that notion tends to soothe. 

It's also a thing in our culture, I think, that Sundays are sacred on a level different from other days. The Washington Post wrote an article stating almost one third of our American labor force works on weekends. Which means slightly more than two thirds of our hungry brethren do not. And everyone reading this knows what gets jammed into Saturdays and Sundays for the Mon-to-Fri worker. Housework, schoolwork, family work, kids' sports, etcetera etcetera etcetera. I know for my Dad the weekends were more work than his jobby job, and he was in law enforcement! So sitting down to a plate of fantastic Eggs Benedict and a cup of coffee (neither of which you'll have to wash afterward) can be a respite amidst a crazy obligation overload. People go alone, or with friemly. They go with an open heart or smarting from the events of their recent days. They go and sit and release their minds...a brief window of relaxation before Monday comes back and starts its weekly fisticuff. None of which is all that different from the church-going experience. 

I am grateful to be back in the biz. The change to my schedule not only has me soaking my feet, but also writing again, and as always the writing's the thing. If I can pull my weight and help make this gig a success I can keep more time dedicated to the third novel and ultimately getting both it and the second published. So please come see me some Sunday. The Chicken and Biscuits Benedict is not to be missed, but make sure you also try the pancakes. They're delicious. 



*Attention food service veterans: This is not a rhetorical question.

w Attention everyone everywhere: Noted exceptions include Easter, Mother’s Day, Super Bowl Sunday, Valentine’s/Sweetest Day, and the mornings of local high school or college graduations. 

First, panic. 3/11/2015

posted Mar 11, 2015, 12:47 PM by Kathryn Simpson   [ updated Mar 11, 2015, 1:14 PM ]

"I make a project and I panic. Which is good, it can be a method. First, panic. 
Second, conquer panic by working. 
Third, find ways to solve your doubts." 
                            -Eduardo Souto de Moura

I haven't been blogging much (though surely barely noticed by anyone save my beleaguered husband.) My absence from the blogosphere has had purpose. I've been writing and re-writing and editing and re-editing and editing-again the next novel. And actually also starting the third, but let's not worry about that right now. 

I stopped blogging so I could spend my writing hours trying to put Standing With Buffalo to bed. If I told you how long ago I actually started this book you'd shake your head and roll your eyes. Suffice to say it was a long time ago and it's been something of a monkey on my back. But there comes a point where all monkeys should be set free to roam the forest and throw poop at other monkeys. I'm hoping SWB is finally close to that point. Or at least close enough for a professional editor to take a look. Which is as terrifying as it is exhilarating. So first step: Panic. Done.

Second, conquer panic by working. Which in this case means I have to get back to beefing up my "electronic presence." I find blogging and tweeting quite a bit more challenging than book writing. But it's the nature of the new millennia for independent authors like me with a marketing budget consisting of negative numbers. An alluring online presence can/should attract readers and followers. Having readers and followers can/should attract publishers. Having a publisher can/should attract buyers. So it's back to the blog board I go. Back to the tweeting and retweeting and posting and commenting. Tell all your friends and I promise I'll do my best to be interesting. 

Now, about this "find ways to solve your doubts" business.... I haven't yet pinned this one down, but my gut tells me it will involve some combination of chocolate and whiskey. These may not legitimately solve my doubts, but they should at least distract me from doubts. 

You can bet I'll post the results in my next blog....

A Moment of Silence in the Newsroom, If You Please. 10/22/14

posted Oct 22, 2014, 8:49 AM by Kathryn Simpson

Ben Bradlee has died at the ripe old age of 93 years. You can read the Washington Post obituary here.

He was an icon of journalism and a tradition of communication that is long gone now, so infected with electronic doo-hickeys is the news these days. Never mind the too-often casual approach to fact checking. To say Bradlee saw a lot during his fifty plus decades in journalism is beyond understatement. His death signals one of those fabled "ends of an era," and all of us who love that industry are more than a little sad today.

I fell in love with newspapers as a child. The smell, the transportability, the romance of the whole world in a stack of low grade sheets. I wanted to be a reporter so bad! But real journalism requires stones. I have a pretty big chip on my shoulder, but not one so big I can't admit I didn't have the skills and single-minded dedication required to do the gig justice. Better to switch to writing fiction. Good fiction also requires stones, but offers the comfort zone of "make believe" that journalism doesn't. Or, at any rate, shouldn't. But man oh man, I do love good reporting! I try to apply some of the skills of good reporting to writing my books, like Hemingway and Leonard did. And if I could make even half the career out of writing fiction that Bradlee made out of conscientious, factual news reporting.... The idea gives me goosebumps. Do I have the stones for that? I like to think so, but the truth remains to be seen.

"As long as a journalist tells the truth, in conscience and fairness,
it is not his job to worry about consequences.
The truth is never as dangerous as a lie in the long run.
I truly believe the truth sets men free."
-- Ben Bradlee (1921-2014)

- 30 -

To Take My Own Advice. 12/31/2013

posted Dec 31, 2013, 8:11 AM by Kathryn Simpson

    For the last several years New Year's Day has been my favorite holiday. Far eclipsing the "favorite days" of my youth, the older I've gotten the more I've valued the clean slate and fresh start symbolism of January 1st. The sight of a brand new calendar with no agendas makes me absolutely giddy. It's all about the potential. Don't be discouraged by the "X"s and arrows and eraser marks on the previous year's months. Those days were handled, well or poorly, and your only responsibility to them moving forward is to learn from what worked or didn't. 

    As much as I appreciate metaphors, I'm not making any resolutions for 2014. Resolutions are just opportunities to ladle passive aggression on ourselves and I don't find them productive. Some folks can see them through, sure, but I think many of us too often get sidetracked and discouraged. So I say let's just get through the next 12 months with a sense of humor and a hearty dose of patience with ourselves and the people around us. Walk more. Read more. Plant something green and watch it grow. Drink water. Pay attention. Be honest, even when it's uncomfortable. Listen when someone's talking to you. Let yourself unplug.

    Now...to take my own advice. 

    So long 2013. Welcome 2014. Forward motion.

The Dastardly Plans of the Unconscionable - 11/15/13

posted Nov 15, 2013, 3:47 PM by Kathryn Simpson

I wrote at the end of September that my insurance company had hung me out to dry regarding a possible new drug protocol to treat my delightful Multiple Sclerosis. You can read Hatin' the Haters - 09/29/13 to be dazzled by my wit. Here's an update. 

My neurologist filed an appeal. His appeal was denied. 

He filed another appeal, and requested a board-certified neurologist review my medical records to bear witness to the wisdom of the proposed new protocol. 

This appeal, too, was denied. The grounds? "Medical necessity."

So, the Insurance Company Paradigm (ICP) has determined that my chronic progressive illness doesn't make me sick enough to justify the care recommended by a medical professional. 

The first denied appeal left me devastated. For the 2nd one I only teared up briefly, and then I had to laugh. Because surely they can't be serious! But oh yes. Just like Leslie Nielsen, they are serious.

My neuro works closely with the company that produces this drug, and was closely involved with the trials when it was first launched a few years ago. Their combined response to the ICP response was to see if I'm eligible for a patient assistance program. Similar to a grant for students, it's intended to ease the financial burden for patients that either have no insurance or who's insurance doesn't cover much or any of the cost. 

Husband and I agreed to give this a shot, and received a response after only 2 business days. I was approved and would be able to start the new drug once the prescription is filled and I schedule an appointment with a hospital for observation of my first dose (Bitter note to ICP...People without "medical necessity" don't have to be placed under hospital observation for hours upon dose of a medication!). So...you know...forward motion! I am genuinely grateful for this news, and for the kind humans at the Pharma company who approved my request.

I haven't received the new Rx just yet, and therefore haven't scheduled my trip to the hospital so I can get started. But all of this has given me new insight into the ICP's decisions to deny my doctor's recommendation. Many Pharma companies have developed patient assistance programs. Certainly the ICPs are aware of such things, seeing as how they're all in bed together in the first place. So why approve a costly prescription for a patient when the patient, back against a wall, will HAVE to turn to the drug company for help meeting the financial burden? Stall the patient's care, deny doctors' requests and eventually someone will get desperate enough to humble themselves and throw themselves at the mercy of the drug maker. No need for the insurance company to be concerned at all, when the drug provider can share with me the burden of my fate. 

I've murmured this theory to some folks who are living with the same condition. They haven't yet told me if they think I'm nuts. Speaking of, I wonder if being "nuts" would meet the qualifications of "medical necessity" ? 

I think it's a safe bet the answer is no. 

Hatin' the Haters - 09/29/13

posted Sep 29, 2013, 1:00 PM by Kathryn Simpson

I’ve been writing this little bloglet for the last three years (and can we all briefly say, “Holy crap! Where did the time go?!”). Kind folks who’ve been reading during these months know I’ve was diagnosed with Multiple Sclerosis in early 2011. It’s been a learning experience, above all, but I’m generally in pretty decent shape. I am definitely fortunate. I have a great support system; access to medical resources and the disease itself has been fairly gentle with me.

It certainly hasn’t been without hiccups. My first prescription protocol didn’t work. It didn’t stop the progression of the disease, so my then-neurologist switched me to a more aggressive treatment. Which DID seem to stop my crazy immune system from attacking my central nervous system. Huzzah! But after a distressingly brief period, my body responded to the drug by triggering a response to a usually-benign little virus most of us actually already carry around in our systems*. The response is an antibody. The antibody means continued treatment could result in a bad case of PML, or Progressive Multifocal Leukoencephalopathy**. 

Long story short, I need a new drug. My new neurologist is confident the next step is an oral medication. No injections, no infusions, no needles in general. My veins are very grateful! We're trying to get the necessary ducks in a row so I can start this protocol before my immune system catches wind I'm not currently medicated and decides to freak out like the Cookie Monster at Mrs. Fields. I think I can trust this doc and Husband definitely likes him, so.... Forward motion, right? 

But not so fast! I got word Friday that my insurance company will not cover the new drug. That in and of itself is not a surprise. What's surprising is the reason. Apparently, I haven't "failed" enough drug protocols for them to cover me trying a new one. They acknowledge the first fail. But in their pencil-pushing, insurance-adjusting, money-grubbing paradigm the first failed drug that resulted in new active lesions on my brain (lesions, as opposed to Legion) should have resulted in my then-neurologist putting me on a specific different prescription of less effectiveness. Does that make sense? They're saying I should have tried another drug with a less successful track record AFTER the other drug didn't work. The insurance company wants me to waste more time and risk more of my health to prove that I'm really sick enough to justify trying this new drug protocol now. 

My first drug didn't work, I tried a second one. The second one put me at risk of disability or death. But because my second attempt wasn't the drug the INSURANCE COMPANY recommends, they will not approve my 3rd chance for keeping this disease at bay. 

So...you know. The insurance company holds the strings for the care of my central nervous system. It boggles the mind in question.

That everyone reading this has themselves--or knows someone who has--been in this pickle makes it even more simultaneously ridiculous and infuriating. Insurance companies are not medical experts, regardless of the alleged qualified professionals they hire as consultants. I get they have to hedge on the side of caution because there are humans who want to work the system for extra meds or extra treatments or whatever. But I don't think I'm off base when I say people with chronic debilitating illnesses are not just out drug seeking. Somebody with lymphoma, lupus, Alzheimer's, scleroderma, rheumatoid arthritis, multiple sclerosis, etcetera...we're not just out to get high or try a new Rx. We're trying to live our lives. Meaning, with no hyperbole, we are trying to HAVE a life. To STAY alive. And these insurance company stooges*** make decisions based on numbers on paper. Decisions that have nothing to do with the impact on actual human organisms. It's a farce!

Here's the deal for me, personally. Like I said before, I'm very lucky. My symptoms have not yet manifested in obvious physical infirmities. I'm able to walk unassisted, most days, and my vision has only been affected about 5%. I have issues that are frustrating (sometimes terrifying), but compared to many people with this disease I'm doing pretty darn good. But the nature of MS and other progressive illnesses is exactly that. They progress. They continue to advance in whatever hell they want to reap on our systems. Our care is basically about stalling and postponing further damage. And that fact is always just out there. A peripheral truth of our "new normals" and I'm here to tell you, it's a drag. Because when I got the call that the insurance company is not supporting my new treatment, I immediately heard a clock ticking. Because every day I live without some kind of harness on this disease is a day closer to when the disease decides to stop screwing around and really deal me another major setback. 

The insurance company, with its paper-pushing, money-grubbing, bottom line-worshiping paradigm, is risking my health and my future. It's playing chicken with a disease that it doesn't have to live with. I'm living with it. Husband is living with it. The people who have to pick up slack for me when I make MStakes (that's MS+mistakes...get it? har-dee-har-har!), they have to live with it. 

So from all of us to you, ICP (that one's Insurance Company Paradigm), how about you just do what you're supposed to do and insure I have a chance for a safe and healthy future as a premium-paying client? Because right now it feels like you're just stalling. Like you want to drag out my disease in favor of me getting so sick that I can no longer ask you to cover my health needs. I wonder...are you in the practice of denying treatments because you're secretly waiting for your clients to get ill beyond repair? Are you patiently angling for your chronically-ill insured to go on Hospice because that's ultimately less expensive than pursuing new avenues for health? Making us wait costs you nothing. Sending us a letter or a missive isn't nearly the investment of supporting a more advanced drug protocol. Making us chase our tails by slowing our treatment in favor of older, less-effective prescriptions is far less uncomfortable for your board members. Don't mind us. We're just listening to clocks tick.

I am so angry and frightened right now, I'm having a hard time holding my act together. Husband is doing is best to keep me laughing and focused on all the good in our lives. But I am pissed. Because of all the obvious reasons, but also because I hate having my fate rest in the hands of people who have no appreciation for the position in which they've placed me. So hear this, ICP, loud and clear: 

Leave the big decisions to the actual medical experts.

People who are facing a shortened life because of a physical condition truly don't give a crap what it's costing your stockholders. 

Keep your fiscal bottom line away from my future. 

*What I like to call Jesus Christ Supervirus

**Keep your mitts off my white matter!

***Not the best quality, but you get the point.

"Must be Italian!" 07/23/2013

posted Jul 23, 2013, 2:25 PM by Kathryn Simpson

One of my very favorite films of all time is A Christmas Story. If you've never seen this movie I can only assume that you're newly escaped from a Turner Broadcasting System-free society, or maybe completely brand new to America. I highly recommend you remedy your condition at your soonest convenience, and feel certain you will thank me later. Let's turn to IMDB for a primer: A Christmas Story (1983)

One of the funniest bits in the movie is when Ralphie's dad, Old Man Parker (brilliantly played by Darren McGavin, may he rest in peace), wins a prize in a regional sweepstakes. It's delivered to their home and much drama ensues. Jealousy, envy, lust and deception all play into this one delightful plot point. The outcome is broken pieces of lamp and shards of dreams in nearly equal parts. 

It is an almost-perfect analogy for some element of most of our lives. Jean Shepherd knew how to sink a hook, I'll tell you. For me, I've been saying "Frah-geee-lay!" a lot lately and giggling like a maniac. Because I do feel very much like that lamp. Possibly with base set firm on a table, possibly precariously balanced and just waiting for a simple watering can to send me tumbling to the living room floor. My perception of my stability varies almost from hour to hour, depending on specific elements of the day. The MS, re-adjusting to Southern Missouri weather, trying to succeed at a new job.... I get wobbly, but I'm trying to hold on. I'm clinging to balance. I'm laughing at "Frah-geee-lay!" Because what else can I do? 

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