Out of the jar and into the world

It's been quite a while since my last post. So many exciting things to report. What, you ask? I'm not going to tell you! Or at least not now. Stay tuned for future reports. I've been offline for quite a while now, years to be exact. My life has been a whirlwind. I spent months at hospitals and a bedside losing a beloved parent, then for myself over a year of hospitals, homecare, physical therapy, occupational therapy and speech therapy. While i've talked openly for years about having Lupus this was not the culprit this time. Nope. I caught meningitis. That very public war of the vax vs antivaxers has become personal for me. I caught a preventable illness and lost abilities that were once mine without effort. I was fine (relative to being my own weird normal) one minute and woke into a nightmare of not having deliberate movement, skills or cognition the next. I'm not in a high risk category; I don't live or work closely among others like in a dorm setting, i'm old (in my late 30's) and didn't go to crowded gyms or other common places to pick it up. There was nothing I did that put me at higher risk for this. But still, I caught a deadly, preventable illness. It was not a cold, it was not something that would pass on its own, that could have been treated with homeopathy. It's a deadly, extremely painful, contagious, preventible illness. In a matter of hours my brain swelled to the point in pushed everything in its way out to make room for its growing size, no more room for eyes and ear canals. My brain needed space. I will elaborate further in future blogs. At this point the thing this experience has left me with most is how deeply personal the struggle is after a brain injury. I've had lupus for decades, I thought that was rough. I had no idea what rough was. My heart goes out to others struggling with the many causes of brain injury whether it from a disease process like Parkinson's and Alzheimer's, a stroke, an accident, or in my case a bacteria or virus. I think this kind of injury robs you of the very being that you are by ripping your independence from you and the abilities that were your own. Without the immense medical interventions of rehabilitation and treatment I have had I wouldn't be here at all able to blast out this blog. Not only was my life spared, but the quality of it slowly being returned to me through tremendous professional dedication. If you know someone suffering from any sort of brain involvement and are confused about their struggles, that maybe their more obvious physical impairments are healed or not there at all so life should be returning to normal for them. It's not the case. The real damage of brain injury is the tip of the iceberg you can't see. The changes that are internalized within the patient, the daily struggles to communicate as they once did or have muscle memory movements, or move freely without serious effort. The overwhelming fear of loss of independence that has already began or is beginning. Just like in my journey with Lupus, others can't easily see the demon that possesses our bodies in brain injury. But it is real. Because of this journey I had to do yet another do over in my life. One that could accommodate my overnight disabilities. This is also opening the door to new possibilities I never would have considered before. Look forward to my next post "Forever Kittens!" as I jump (or hobble with assistance) into the world of kitten fostering. While those furry little maniacs help rescue me with their unconditional love and fluffiness I get to rescue them right back and return the favor. Stay tuned! love, your slightly less menacing and more wobbly pickle.

An Ode To My Germaphobia

There once was a germaphobe named Pickle,
her thoughts towards germs never fickle.
She felt they were gross,
fears needing penicillin dose,
that ick would leave her with more than a tickle.

She packed all the stuff needed to clean,
fearing other travelers have bugs that lack a vaccine.
She hoped to avoid,
all those carrying Typhoid,
But at least leaves all surfaces fresh with a sheen.

Menacing Pickle, Wandering Somewhere Aimlessly Near You?

I’m shutting down the store from September 1 to October 10. Why? I’m hitting the road! Hopefully not in a literal splattering sense. Well, the skies actually. And as it now seems the trains, cars, buses and canyons of our great country. In 2009 Jetblue offered an All You Can Jet Pass, allowing holders to fly unlimited on Jetblue for a designated month. An unconfirmed number of lucky purchasers would be jetsetting during an otherwise slow flying time. I was not one of them. And I regretted it. For a year I discussed with friends what I would have done had I purchased one, the food, the visits, the fun. Well, they offered it again. I knew it would sell out in a matter of hours and had to make a choice. I pulled out the credit card, sucked up my fears and charged. At about 2am (it’s regular Pickle operating time) I became Menacing Pickle JetBlue AYCJ flyer. Holy crap. What have I done???

I have a lot of dreams, a big one being that I would get to see every state in The United States before I turn 35. For those playing at home, I will be missing that goal. I am getting closer though! To both seeing all the states and turning 35. One I’ll deny, the other I am really excited to talk about if you ask me. I hope to lead people in such misdirection about my age that at my death you’ll have to cut me in half and count the rings to disseminate the truth.

If you follow me on twitter or have met me in real life you know I love to read, it’s one of the things that has carried me through my battle with Lupus. I’ll read anything, fiction, non-fiction, horror, history. I don’t promise to like it, but I’ll read it and have an opinion. During times I have been bedridden or just trapped indoors I could always better who I was through someone else’s story, or at least distract myself. I could occupy my thoughts away from however unfortunate I found my own circumstances to be engrossed in other journeys. I’ve followed their heartbreak, their loves, their avoidance of strange creatures on stormy nights, page by page. I imagine their sights and foods, word by word. Some of these sights I had never seen outside google, and I have regrets over that. I want to understand the texts I read on a deeper level and see many of them for myself. When a character in a book drowns her sorrows in a serving of lasagna, I know what it tastes like. I can appreciate the oozing cheese, aromatic basil and carefully baked noodles. The care one takes not to have a bubbling morsel lick your chin when you inhale it before waiting for it to cool. But I don’t know what The Arches in Utah smell like, what the food cart in Portland tastes like, or if the people of Vancouver got to smell David Duchovney and Gillian Anderson. I’m going to know!

2:15AM…complete fear sets in. I have Lupus, and I will be exhausted. I thought “I have given up so much to this disease don’t give up this chance." I also thought “Stay home! Stay home! Stay home!” So many things that have crossed my path, not worth taking a risk on. "Don’t pass up one of the few things that could be worth that risk.” There are no written rules governing how I will travel, that I can’t nap instead of sight seeing. How I’ll choose to proceed from here, however slow or fast as I navigate my way. Yet, I’m scared. I know all too well how disappointing it is to be mid conversation, really hanging on the words of my companion and then distracted by how very tired I am. How much parts of me hurt, and that I have hit my limit for now. How I seem disinterested in them when I am really very interested but conflicted. This trip is both an exploration for me in miles and physically. My logic knows that my life will be stagnant where it is if I don’t push myself outside those boundaries, my body reminds me what happens when I push myself too hard. It’s not pretty. I keep telling myself I can return home, to bed at any time. It’s only a plane ride away, or a bed a hotel room away. I’m really hoping I make it through the whole month both to prove that I can learn to pace myself and because I really, really want this.

I want to meet so many of the people I have had only email and phone contact with regarding our battles of the Consumer Protection Safety Improvement Act. People I consider close friends who have launched letter campaigns and marched to save our businesses, mine and theirs. Many of us who lost our businesses and nervously began new ventures. I also have such a desire to meet people that are strangers as I write this but know they won’t be as I leave their state. All the people who are characters in their own stories, in books yet to be written.

It motivates and moves me to know the reason a bodega owner emigrated from another country to ours. Why the elderly couple next to me at a national monument made the trip. I look forward to hearing their stories, and yours if you are near somewhere I am landing. If you will be in a Jetblue city and would like to have a meal together or visit an attraction, I’d like to hear your story too.

Why I sound like a frog and other useful facts

Lately I have been plagued with questions about my voice. Possibly, I am hitting another stage of puberty in my 30's. More likely it is because I managed an upper and lower respiratory infection that seems to have rendered me Jessica Rabbitish. And so begins the reminder of why I hate health care.

Menacing Pickle now exists with two main purposes. One, to bring awesome, safe clothing to kids and parents. And two, to pay for my medical costs. The second, I am not currently achieving. I don't know that Trump could achieve it.

I am medicare-D eligible which means I can get my medications "paid for" through the government medicare program. I say "paid for" loosely because they don't pay for them. No, really. If you are taking a low cost antibiotic I think it is covered, but anything expensive and you can expect a big, fat rejection. Lupus medications are for the most part borrowed from treatments for other diseases because other than Dr. House there is no Lupus awareness. And because the medications are not dedicated to treating Lupus, Medicrap doesn't have to pay for them. It's in the fine print, trust me.

So I pay about $700 a month for the privilege of being a part of private insurance (Blue Cross Blue Shield of Greater Hell) so that I don't pay out of pocket for these drugs. It enables me to be part of a standard tiered drug plan that I like to call; tier 1 pocket change, tier 2 a fine meal, tier 3 get the hell out, and tier 4 the price of human trafficing. Yeah, I have done the math...so that means $700 is less than I would be paying out of pocket. So I do it.

Do they happily take my money and insure me? Don't be silly. Because I am eligible for Medicrap D I am being told they don't have to cover me. Because our fine government health care will pick it up, I am their problem. Even though they won't. So I can't get covered under Medicrap and I can't get covered under private insurance because Medicrap exists. Yay.

Even better, every time I fart at a medical professionals I get the privilege of paying between $20-$45 copay even though BCBS isn't paying a dime. Why? because as long as you have private insurance regardless of what they pay out you are legally responsible for the co-pay. Even if the co-pay is more than they paid the doctor, blood lab, nurse, or padded room rental I am going to need. And furthermore all involved who are collecting my money are not paying my doctor's, so don't think they are getting rich. They aren't. They get my co-pay and that's about it at this point. Only the health insurance is collecting the big bucks.

Where does this leave me? Aside from the tapeworm I am probably festering from eating so much boxed macaroni and cheese to get by, there's more. I like to make sure I have the ebola virus before I go to the doctor. I know, wouldn't it be easier to get the sniffles and have it checked out? No, it really isn't. So that I can save my co-pays which can equal hundreds of dollars a month when you have to see a bunch of specialists for management of a multi system disease I like to make REALLY sure I have a doctor worthy plague before I go see someone. I have now had the pleasure of hearing comments from them like "you waited 'til blood shot out your WHAT before you came in today?" and "you are aware the wheezing sound is oxygen unsuccessfully reaching your body?" I sometimes when I ask them if they could wave the measly $20 so I will feel encouraged to come to followup appointments for my various plagues, they do it. Because generally, medical professionals don't like to see people suffer more than they like to earn money. Even though no one has the right to ask that your services be given for free.

And enters patient assistance medication programs. Oh, you know them if you have ever seen television. After prescription ads talk about the side effects of "Happy Barf Pill" it quickly says "if you have trouble paying for your medications please contact Happybarfpill for help."
I called them. I figured if nothing else they could help name my tapeworm (he responds to Bill). Who is eligible for patient assistance? Only people who have no kind of insurance. So I tell them all about how none of the insurances want to cover me and they tell me to "cancel all my insurance plans so that I am eligible for patient assistance." In doing the math, I could probably take my $700+ monthly to a casino and come out ahead rather than pay for insurance. So I consider it. And I consult Bill who is now requesting ketchup on his Mac and Cheese. And then they tell me "if you are eligible for Medicare D you can't qualify for patient assistance." So who qualifies? I don't know. It's not me. It's not a lot of people I know. It's probably not you either if you suffer from a chronic disease because I could wallpaper my neighborhood in similar stories.

Additionally, I am kidding about the tapeworm but not the other horrors contained in this post.

deer insure rants

Deer Insure rants,

First it startdid wiff hi insure rants preemie-yums. Now I em gutting billz in the male lefffft and rite from docktores yooare no longer paying add-a-kwatlee. Yoo are also declawning to pay fur a numbur uf medikashuns that my docktores feel are mediclee mess-is-saree. Wen did insurants become moor nowledgebubble than docktores on how payshints shud be tweeted? The last straw wuz when I tried to fill medikashuns at the farmIsee I have yoozed for deckaids to be told insurants declined them. When I kalled insurants I wuz told I am rekwired to use male ordurrr farmisee now. Hooo iz benney- fitting from this? Sertanlee not eye, the loopuss pashunt that just wants two get butter. Deafin-nut-lee not the docktores hoo don’t seam two bee getting payd what they halve rytfulleee urned, or the farmisee hoo knows me pursesonlee and my medikashuns cents I can no longer patronize them. So insure rants, it must bee yoo that is benifitting from this. Shame on yoo, may-king the lives of peepole hoo are already suffering that much moor difficult and costlee.

With dismay,

Sarah as dicktated to Alfredo the Kat

Beecuz meowmie haz a headache and wont get up

Trying to get the hang of blogging and fatigue

So, obviously I am new to this blogging thing. I am trying to get the hang of it and be interesting all at the same time.
It's been a while since I posted though thanks to Lupus. I love the days where I forget I have it but hate the revenge my body gives me after.

I have a whole bunch of projects I want to post and when I sit down to edit the pictures I fall asleep. Not even a restful sleep, more of the hard, paralyzed from exhaustion kind.

I am also very frustrated with my health insurance. I had to switch to a different plan with the same company for 2009. My dr wanted to try a new medication that would help with my fatigue..I even met the criteria. Will they pay for it? Nope. After a long cry I started the appeals process. I have to admit, even after years of having Lupus I still think every new medication will cure me. Or at least I hope for a while. The idea that there is one out there that I can't get access to infuriates me. Especially knowing I pay nearly $700 per month for coverage.

As soon as I can get those pictures up I have new projects. I made an Ispy style book for my friend's son and would love to see how it inspires other crafters. I also have some more scavenger hunts to post for Easter and rainy day inspiration.
And of course more kid's outerwear!