#finally managed to make a call for my diagnosis again but there's no appointments available this year and

[quebrntahuesos]

.

[songofsaraneth]

an incomplete list of the Bullshit ive gone through this year (2021 only), for personal edification:

I am in grad school trying to do research as well as TA a lab class during a global pandemic

My car is broken into in late February outside of my apartment. $1700+ of my backpacking/camping gear and personal items were stolen from it. Ironically they did not find the $20 cash I had. 

Car battery begins mysterious dying if left overnight and have to call for rescue from AAA 4 separate times over the course of March. I suspect it is related to being broken into but can’t prove it without a mechanic’s diagnostics.

First mechanic I bring my car to does nothing for the entire MONTH they have it, except break my air conditioning of all things. I live in a desert. It is now 90º every day. At one point they call me to say they can’t get the back doors to open. I walk 2 miles back to them from campus and demonstrate how the automatic doors work on a 2005 minivan. I begin to have regrets about my mechanic choice but the sunk fallacy cost keeps me there for several weeks.

Mid march I also wake up one day to severe jaw pain/a weird “loose” feeling, like my mouth is slanting sideways. It is midterms and I do not have time for this, so I take a lot of ibuprofen and eat soup for a week. After 3 days I shove pillows and blankets around my face one night to keep my jaw aligned and when I wake up the next morning it is severely tight instead of loose, and I have to carefully stretch it open whenever I leave my mouth closed for more than an hour. I guess I just have TMJ now.

At this point I am walking everywhere until bike supplies arrive to fix my flat tire since the bike store is too far away to walk to; including walking back and forth to campus since I can only bring 2-4 out of 8 students into the lab spaces at a time and so effectively have to run each weekly lab 2-4 times per week; as well as going back and forth for greenhouse experiment monitoring/helping undergrads on our NASA contest project

Early April I go to the dentist for a crown on one of my back molars, which I must pay for out of pocket because my new dental insurance purchased when I moved last September has a 1-year waiting period and so will not cover it ($1200). Stretching my jaw open so far for the procedure reignites my new TMJ back to high pain levels.

While still waiting on car in mid-April I have a severe averse reaction to the second dose of the Covid19 vaccine, resulting in painful ulceration of all the soft tissues in my body (mouth, stomach, genitals). It is a very bad time for 3 days and I book an urgent care appointment for the first time ever.

Urgent Care nurse-practitioner does not believe me when I describe what’s happening, and misdiagnoses me with herpes.

I am still biking everywhere but now I’m extra mad and in pain about it so take car back from mechanic so I can get groceries etc. I make an appointment with the dealership but it will be a week until they can take it. In the meanwhile I have to drive it every 8 hours so it won’t die which means getting up at 2am to drive it for 20 minutes in the middle of the night so it will still turn on in the morning. 

I have a terrible reaction to the numbing cream given to me for the painful open sores over my body, because of a lifelong mint sensitivity, resulting in an even greater amount of pain

The dealership can fix my car over the following week but its $1800 and now insurance isn’t sure they want to cover it after all

Herpes test comes back negative and nurse apologizes profusely and recommends a non-mint OTC numbing cream alternative that works (yay) and a numbing spray that does not work because it turned out to use an alcohol based propellant which should not be combined with open wounds esp on the genitals (ouch ouch ouch). I try to tell the nurse why I was right about my diagnosis and she was wrong but she still believes it was a latent virus of some other variety and and not an immune response alone, despite the published case studies I have brought to back me up. I decide I have bigger hills I need to die on right now and stop arguing. Sores persist into May but eventually do go down and numbing cream keeps me moderately functioning.

Car is fixed and I can drive again but it takes 2 hours of crying on the phone to my insurance company for them to agree to cover the cost of repair

I make a primary care appointment for the first time in years so I can have a doctor in this state if something like this happens to me again, in June I do intake/bloodwork/set up appointments to check out some other issues ive been having

Grad school finals happen which i wont get into but Yeah. Finals stress triggers another outbreak of canker sores, but mostly clustered in my mouth and only 2 on my vulva rather than 8-12. I eat only soup for another week. 

I get a referral to the local mental health clinic and call about setting up an appointment for an ADHD evaluation. They tell me to download and send in some paperwork and they will call when they have available appointments

I am supposed to be doing all my labwork over the summer but the committee member I need escapes my clutches and we don’t manage to set up a meeting to plan it out/for him to explain the protocols until late June

Bloodwork shows I am critically low in vitamin b12 and low in D, which may explain some of why I am so tired all the time

Ultrasound shows a 1.8cm mass in the adnexa near my left ovary. There are several options for what it can be (folicular cyst, other kind of cyst, tumor, ectopic pregnancy i nearly laugh at my Dr and reassure her the last one is not possible if nothing else). It may go away on its own or it may not. Follow up scan in 2 months

I remember I was supposed to email forms to the mental health clinic and finally send those in mid July. It seems cruel to make me be the one to remember this considering I am calling about a formal ADHD diagnosis.

I also finally pin everyone relating to my labwork down and have a follow up meeting + make a list of what we need to order, but the staff who place orders are on vacation and when they get back several reagents are backordered

I have my follow-up ultrasound. The tech takes lots of photos which indicates the mass is still present, but I won’t know any details until my next PCP appointment when they send over the analysis to her in mid-August

Beginning of August the reagents I need for the first steps of the process arrive exactly 1 day before I leave town for a wedding and the lab manager is about to leave town for the entire next week

After the wedding, severe thunderstorms and tornados trap me in Chicago for 4 extra days. I spend a lot of time at the airport or on my way between the airport and my parents house. A facebook friend gets video of the funnel clouds which at least gives me something to sadly email my advisor and committee members when I have to join our planning meeting from my gate at O’Hare

I lose my drivers license at the security checkpoint on my last trip through the airport and don’t realize until I am boarding the plane because of course that is happening to me now

On the shuttle from El Paso back to Las Cruces after this ordeal the driver stops and picks up a box labeled HUMAN BLOOD and puts it in the trunk and i am too tired to care anymore

I stay up all night making the world’s most pitiful r graphs for my meeting the next morning and everyone takes pity on me and does not call out how useless they are

I spend the weekend trying to motivate myself to actually go into the lab and start my procedures, and fail to leave my apartment. This reminds me it has now been a month (Aug 15th) since I sent in my paperwork and the mental health clinic has still not called me back about up an appointment

I get overwhelmed with Everything and make this list

So that’s where I’m at at the moment. And this doesn’t even include anything from 2020 thats just been continuous like, y’know, a global pandemic and having a bad breakup of a 4 year relationship and moving to a new city where I know no one for grad school etc. I feel like I’m falling apart/unable to do all the shit I need to right now but you know what? Actually its been a really bad time and maybe falling apart a little is justified ;_; 

[spidergwenistrans]

I'm sure lots of people have talked about this already, but I think it's really shady the way only parts of transition healthcare are ever covered by so many insurance providers. I'm talking both public and private here.

I want to be very clear about the fact that I'm arguing we add any additional roadblocks or gatekeeping to transition care. All I want to argue for here is that more options be available.

In Ontario, I was able to access HRT through an informed consent process, which means I proved to my doctor that I understood the limitations, side effects, and risks associated with estrodial and cyproterone, the meds I take.

I was lucky, this wasn't my GP's first time with this, so he knew what to do, I didn't have to educate him on the basics of it. He has his limitations, and eventually I want to see an endocrinologist about progesterone, and long term management of my hormones, especially post bottom surgery.

In lots of places, it's way harder to access even HRT. In the UK for example, my understanding is that you need to see a specialist, and GPs are generally unwilling to prescribe HRT even in the interim before seeing a specialist.

As far as I know, the UK is the only publicly funded health care system that covers gamete preservation for trans people, though it's not a part of the system I hear much about. Obviously the UK system has lots of issues, but on paper it sounds like it should be the best one to be trans in.

OHIP (Ontario's system) won't cover HRT for lots (most?) people, because OHIP doesn't really cover medication for anyone from 26-64(?). It does allow your doctor to prescribe you hormones, which was a big win. It also allows bottom and top surgery to be covered, but each has to be approved individually, according to the page listing the requirements.

The fact that top surgery to remove breast tissue has to be approved, but breast reduction is covered automatically, and all you have to say is that it prevents you from living the life you want (essentially, there's a specific wording, but any good surgeon will coach you during a consult, as my friend learned).

I don't want this to read as me thinking we should add gatekeeping to breast reduction, I just want to call out the double standard here.

Meanwhile, all of the trans affirming surgeries require 2 seperate assessments, by 2 health care providers, stating you have a diagnosis of persistent gender dysphoria. They also have that classic requirement: "have completed 12 continuous months of hormone therapy (unless hormones are not recommended) you have lived 12 continuous months in the gender role you identify with (for genital surgery only)."

These are a big improvement, for Ontario at least, over what they used to be. We used to be required to see a psychologist, which meant a 6+ month wait list just to get an initial assessment, followed by probably several appointments, hen being sent back to your GP before finally getting a referral to a (the, at the time) surgeon.

Under current requirements, I could probably see my doctor, and then a nurse practitioner with his office and get my surgery approval submitted in less than a month. Of course, that doesn't mean I'd be seeing a surgeon all that quickly, especially right now.

I'm supposed to talk to my doctor on Tuesday about getting this process started, so that's exciting, if a little terrifying, it feels like the biggest step in my transition so far.

I'm kind of rambling here, the thing I really wanted to talk about was what isn't covered.

There's no support for gamete saving, which kind of amounts to a form of mass coerced sterilisation, since many of us can't afford to save our gametes on our own, especially before we even start transition, and we know the hormones will probably make us infertile as long as we're on them. I know for me, I don't think I could tolerate the 3+ months off hormones required to produce viable gametes again.

I probably could have waited a couple more to start if I'd been trying to save gametes then, but there was no way I could afford it on my own, and I'd be wanting to start them for months at that point, and only waited until I came out to my family. I'm personally not that upset about never having children from my own gametes, it doesn't bother me that much, it's not being able to carry them that hurts more. But my personal feelings about this don't mean that I shouldn't have had the option??

The other thing that isn't covered, which really bothers me, is facial surgery. I know that masculising face surgery is in a very different place than feminising face surgery, but I'm going to speak from the perspective of a trans gal that wants FFS, I can't speak to wanting FMS, trans masc folks who know more than me feel free to comment, or link to other people talking about it. I don't think it's exactly my place to talk about it, and I really just don't know very much anyways.

Bottom surgery being covered is so incredibly important to so many of us, but the idea that bottom surgery should be covered, but face surgery shouldn't is wild to me? Ultimately, they're both somewhat cosmetic, but you know what else is? Brushing your teeth. Bad tooth health will eventually ruin your life, and so will dysphoria, so why can't we cover a surgery that would deal with a major source of dysphoria?

FFS procedures are not especially new or experimental, lots of cis women have some of these procedures as well. From a safety-via-passing perspective, FFS is probably more important than bottom surgery for at least some trans women.

I don't mean to say that we should all have it, or that anyone's priorities are wrong, personally even if both were free, I would still get bottom surgery first. I also don't want to imply that passing should be a goal, requirement, or something everyone, or even anyone should strive for. But, it's sometimes useful to frame things for the cis people that still get to make these decisions about our bodies, to be able to understand why it matters to us when it does.

In an ideal world, trans kids won't be forced to go through the wrong puberty, and hopefully some of these surgeries will be less and less necessary, but I don't think we'll be there for a while, and even if we get there, there will probably always be adults who realise their transness long after puberty.

[theremightbecupcakespodcast]

Social Distancing Self-Care: Links

Being chronically ill, I am used to being at home for days and even weeks on end. But I know most of my listeners are not. The only change for me right now is that my doctors’ appointments and physical therapy appointments are being canceled, which does also mean not writing at Starbucks or Barnes and Noble. My anxiety, of course, is heightened by everything that is going on, but the actual social distancing aspect is normal life for me. I know most of you are feeling cabin fever (which is a great movie, by the way, and about a virus–more about using horror to safely experience real-life fears in the next episode), coming right up. My love goes out to you guys. As I wrote on the Facebook page, in the Facebook group, and in the Goodreads group:

I have such empathy and love for all of you. Being forced to stay home and act like the world might make you sick…I know how scary and uncomfortable it is. Please take a moment and sit in empathy, as you struggle with your new reality of social distancing. This is how I have been living for the last six years. Not as strictly. But still the same. Some weeks I only go out of the house for my therapy appointment and a coffee afterwards. Know that when I say this, I am remembering my first days and weeks home from work, and the first days and weeks after each new diagnosis, and how very difficult they were. I am so sorry; I don’t want anyone else to feel this way. I promise the cabin fever goes away. Take very good care of yourself and each other, see this as an opportunity. That’s the lesson it has taken me years to learn.

So I am working on the above-mentioned episode, and other future episodes, and also working on intense self-care. This self-care includes distracting myself with creativity and fascinating media I have been meaning to consume. I thought I’d share some of that media with you, in order to inspire and encourage you. Share some of your own in the comments, or wherever you post your own thoughts. Feel free to promote those links in the comments as well for my listeners.

Letterboxd: Carol Kane’s movies

A horror movie I’ve never heard of! And it looks terrifying. The Mafu Cage (1978), directed by Karen Arthur. It stars Carol Kane and Lee Grant (The Omen), and I can’t wait to watch it. It looks like true 1970’s horror grittiness mixed with the likes of Whatever Happened to Baby Jane and The Bad Seed: psychological horror movies where it really comes down to the interpersonal relationship between two people who may not be sane. And a la Clive Barker’s Lord of Illusions, horror of horrors, there’s a simian involved. Those Illusions scenes, short as they are, nearly do me in.

A terrifying love story.

Two strange sisters live in a crumbling mansion, where they keep a pet ape, which belonged to their late father, locked in a cage. While one of the sisters seems to be keeping her head on straight, as it were, the other appears to be sinking further and further into barbarism and insanity.

For lighter fare, and a good laugh, here’s a horror spoof I found: Pandemonium (1982):

Tom Smothers (of the Smothers Brothers) stars as the brave mountie, who along with his trusty horse and bitter deputy Paul Reubens (Pee Wee Herman!) must track down a killer who is stalking coeds at a nearby cheerleader camp.

Also stars Carol Kane, Edie McClurg (Ferris Bueller’s Day Off, Carrie), Judge Reinhold (Fast Times at Ridgemont High), Phil Hartman (Kiki’s Delivery’s Service, How I Got Into College), Eileen Brennan (Clue), Donald O’Connor (Singing in the Rain), and Tab Hunter (Damn Yankees, Grease 2). I am definitely going to seek this out, and will report back. I’m not normally a fan of horror comedy, but this looks so cute and funny. And Carol Kane! Letterboxd, Amazon (not currently available, but you can add it to your watchlist to let Amazon know you want to watch it). Just knowing this exists makes me feel better.

A spoof of camp horror movies with Canadian mounties thrown in. Yes.

Then there’s Trees Lounge: Steve Buscemi, Carol Kane, Chloe Sevigny, Samuel L. Jackson, Debi Mazar, Io Tillet Wright. Directed by Steve Buscemi. What the what. How did this get past me?!

Tommy has lost his job, his love and his life. He lives in a small apartment above the Trees Lounge, a bar which he frequents along with a few other regulars without lives. He gets a job driving an ice cream truck and ends up getting involved with the seventeen-year-old niece of his ex-girlfriend. This gets him into serious trouble with her father.

One of my Letterboxd friends called this “Cheers without the happy”. I cannot wait to see this./> Letterboxd, Amazon

These are the movies written by my friend Eric Garcia–I met Eric at Yale Summer School 1989, between our junior and senior years of high school–he was taking Drama, I was taking Psychology, and Gender and Political Science; we initially bonded over our similar sense of humors and Goodbye Yellow Brick Road (oh oh whoa whoa whoa whoa): Letterboxd:

Matchstick Men (2003): Nicholas Cage, Sam Rockwell, Jenny O’Hara:

A phobic con artist and his protege are on the verge of pulling off a lucrative swindle when the con artist’s teenage daughter arrives unexpectedly.

(the novel: Matchstick Men: A Novel About Grifters with Issues)

Repo Men (2010): Jude Law, Forest Whitaker:

In the future, medical technology has advanced to the point where people can buy artificial organs to extend their lives. But if they default on payments, an organization known as the Union sends agents to repossess the organs.

(the novel)

Strange But True (2019): Greg Kinnear, Blythe Danner:

A woman surprises the family of her deceased boyfriend by telling them she’s pregnant with his child.

Yes, “Matchstick Men”, if you are my age, that should induce a half-remembered earmworm…

…inspired by the Camper Van Beethoven song, since we’re entertaining ourselves here. And guess what, o happy of happies? Ozzy Ozbourne covered it, with Type O Negative. Have fun!

As always, to follow what I am watching, here’s my Letterboxd diary. Feel free to follow me on there, and I will follow you back.

As for books…I just finished Ronan Farrow’s Catch and Kill: Lies, Spies, and a Conspiracy to Protect Predators. I will never give NBC any of my time nor money again. Also, excuse some brief vulgarity and anger, which is rare for me: fuck Matt Lauer, fuck Lester Holt for being an enabler and minimizer for Matt Lauer, fuck the legal team and highest management at NBC and MSNBC, and fuck Harvey Weinstein and everyone that helped, enabled and ignored him. I say all this as an aghast survivor and an aghast human. About Matt Lauer: that softpedal they gave us, with Savannah Guthrie crying that morning of his firing, reading a statement about “harassment” and “inappropriate work environment”, it was farthest from the truth. Matt Lauer is a violent rapist, and know that going into reading this book. It’s explicit, and much more that you will ever expect. Also, Weinstein is much, much worse than you even knew.

In better news, I posted about this book and how it helped me, and Rose McGowan posted a comment of solidarity on my Instagram post. I cried, and I cry every time I think about it, tears of happiness and healing.

So, while we’re at it: Letterboxd: Rose McGowan’s movies

Rose McGowan: Instagram

Rose McGowan Arts: Instagram: her photography and videography art

Her book Brave is next on my list. According to Letterboxd, there’s an accompanying documentary in the works, about which I am very excited.

If you are into true crime, and i know many of you are, here’s the list of recent 5-stars I finished, including those by my talented friend Caitlin Rother:

Lost Girls * Caitlin Rother

I’ll Take Care of You * Caitlin Rother

My Daddy Is a Hero: How Chris Watts Went From Family Man to Family Killer * Lena Derhally (deep dive into this case by a therapist–the whole second half of the book is a thoughtful, intellectual examination of what might be wrong with Chris Watts)

Scarred: The True Story of How I escaped NXIVM, the Cult That Bound My Life * Sarah Edmondson with Kristine Gasbarre (narrated by Sarah, and the audiobook was directed by Kate Winslet)

The Five: The Untold Lives of the Women Killed by Jack the Ripper * Hallie Rubenhold (more history than true crime, incredibly moving and marvelous detective work)

My long-suffering library hold for Madeline Miller‘s Circe finally came through, and I am beyond excited. I loved her gorgeous Song of Achilles so very much. It was so luscious in its imagery and relationship, and its retelling of myth.

I am also reading, on my Kindle, His Garden, Conversations with a Serial Killer, by Anne K. Howard, about William Devin Howell. I’m listening to The Wild Heart of Stevie Nicks written and narrated by Rob Sheffield, the author of the thought-full and moving journal of essays Love Is a Mix Tape: Life and Loss, One Song At a Time. It’s only two hours long but it’s taking me forever because I keep having to pause it to listen to her music.

I’m also knitting a blanket for Wil Wheaton. It all came about from an Instagram conversation about coziness and Muppets last year. There’s been a reboot of this blanket; I won’t bore you with the details and carnage…suffice it to say I won’t be using chenille yarn ever again. I’ll follow up here and on Instagram with new photos. The concept is a warm Muppet hug, and the base pattern is the Elm Avenue Throw Blanket by Lauren Scungio. (Feel free to follow me at Ravelry, my user name is CarlaYarn.)

View this post on Instagram

Rebooting @itswilwheaton’s Muppet hug blanket. Why? It’s a long story involving many struggles, ending with the strong resolution that I will never knit with chenille again. Stitches kept gapping and stretching; it was a crime scene. Anyway! Revamped, and the end result is going to be much more joyous and colorful, and durable. I chose colors of @knitpicks Brava that corresponded to 19079’s old-school Muppets, including overlooked intrepid reported Prairie Dawn. The Muppets are Big Bird, Bert, Ernie, Cookie, Prairie, Kermit and Herry. The original yarn retained from the original plan is the fuzzy one—the Caron Latte Cakes—it adds the furry aspect as a carry-along. The pattern is the same: the Elm Avenue Throw Blanket by #laurenscungio and #loopsandthreads. I’ve making it on larger needles than called-for for extra squish. Wil, I hope this brings you and @annewheaton much coziness and comfort. Now that I have worked out the frustration (and my health is cooperating), this blanket should be “Movin’ Right Along”. If anyone wants to follow along or check it out. I made the project public on Ravelry at https://ravel.me/CarlaYarn/eatb. #knitpicks #knitpicksbrava #caronyarn #caronlattecakes #muppets #knitting #wip #ravelry #sesamestreet #prairiedawn #bertandernie #cookiemonster #bigbird #herrymonster #knittersofinstagram #knittersofravelry #knitstagram #knitting_is_love #knitlove

A post shared by Carla Hufstedler (@carlahaunted) on Mar 18, 2020 at 9:14am PDT

I shall return with, of course, the aforementioned podcast episode, and more links, more suggestions, and more photos, especially photos of the knitting. I hope this long collection has helped–I spent all afternoon aggregating it. As always, any of the books mentioned can be collected for free with a trial membership from Audible, which helps me out, through this link: http://audibletrial.com/mightbecupcakes. As well, using any of the links in this or any post on the site helps me out. Our family budget is on lockdown. You know I still do not receive disability, and now my husband cannot go out to work. So your clicks and purchases really help, thank you so much. I will also be uploading more scripts to the show’s Patreon, and updating the Patreon levels. Please consider joining, and thank you. If you are not a fan of Patreon, you can also leave me a tip at Flattr. Episode 59 is on its way. I love you, and I hope you find something in this post fun.

To leave this on the most possible fun note, puppies must be involved, right? Well, my parents have three dogs (to my two), and the youngest, still a puppy, is Olivia Benson, and she is a very rare full hermaphrodite. She is cute as as a button as well as fascinating (her vet is going to publish a paper on her). We (meaning me, prompted by my parents via text message as they send over pictures as well) have been chronicling her journey on Instagram at @oliviathespecialpug. Give her a follow. She’s cute and sassy and ridiculously smart. Her older brothers Spencer Reid the pug and Preston the long-haired dachshund show up occasionally as well, and they’re all just stinkin’ adorable. I’ll leave you with her most recent shots. This first one was from Sunday, I was watching 48 Meters Down: Unchanged (I know, I know, here’s my review), and she was falling asleep with her arm on my shoulder, like a human, then there were birdies! She pointed at the tv then looked at me with great confusion then pointed again. The next one was from her spaying + neutering–yes, she had to have both, in a compound, complicated surgery, and she is stoned out of her gourd. I laugh every time I look at these. To me, she looks like a furry toad. I hope they make you laugh, too.

View this post on Instagram

I heard birdies in @carlahaunted’s horror movie and pointed. #pugstagram #puglife #puglifechoseme #hermaphrodite #olivia #oliviabenson #detoliviabenson #svu #lawandordersvu #oliviathepug #oliviabensonthepug #oliviathehermaphroditepug #puppiesofinstagram #pugsofinstagram #pugpuppies #pugpuppiesofinstagram #pugs #pugchronicles #flatnosesociety

A post shared by

Olivia Benson Pettigrew (@oliviathespecialpug) on Mar 15, 2020 at 7:54am PDT

View this post on Instagram

Teething pug = sleepy pug. #pugstagram #puglife #puglifechoseme #hermaphrodite #olivia #oliviabenson #detoliviabenson #svu #lawandordersvu #oliviathepug #oliviabensonthepug #oliviathehermaphroditepug #puppiesofinstagram #pugsofinstagram #pugpuppies #pugpuppiesofinstagram #pugs #pugchronicles #flatnosesociety

A post shared by

Olivia Benson Pettigrew (@oliviathespecialpug) on Mar 15, 2020 at 7:40am PDT

View this post on Instagram

I am recovering from my complicated neutering/spaying surgery nicely, but my first experience with pain meds has me very confused and doing a really good Baby Yoda impression. @carlahaunted was dogsitting me, and I kept standing up stiff legged suddenly, like I had forgotten something (Carla said it was like I had remembered I had locked my keys in my car) and then standing up on my back legs like a meerkat. I finally slept with a good, juicy pain meds + pug flatnose snore. I figured out how to untie my stuffed cone of shame. I am one clever puppy, even on pain medication. My big brothers are worried about me, but being very gentle and very well behaved. I can’t wait to play with them again. #Pugstagram #puglife #puglifechoseme #hermaphrodite #olivia #oliviabenson #detoliviabenson #svu #lawandordersvu #oliviathepug #oliviabensonthepug #oliviathehermaphroditepug #puppiesofinstagram #pugsofinstagram #pugpuppies #pugpuppiesofinstagram #pugs #pugchronicles #flatnosesociety

#babyyoda #babyyodapug #coneofshame

A post shared by

Olivia Benson Pettigrew (@oliviathespecialpug) on Jan 23, 2020 at 10:27pm PST

The post Social Distancing Self-Care: Links appeared first on There Might Be Cupcakes Podcast.

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[lordofthebigtimesupernatural]

I understand that you are very busy but I enjoy your series so very much and I was wondering if you would consider a cancer scare in which an abnormality is detected in 13 y/o Keith's pancreas and he needs to go in for scans. Shiro, knowing pancreatic cancer to be extremely deadly, would be absolutely devasted, and we live for the angst, don't we? :)

Ahh! As you can tell, I am super busy and slacking! I am so sorry but WOW nonny, way to make me sad. Like thanks! But you’re right we do all live for the angst, don’t we? And I could have made this even angstier but I couldn’t let my babies suffer. Thanks for sending in these prompts everyone and enjoy!

x.V.x

              It wasn’t often that Keith got sick. Every now and again he caught a cold or sometimes a bad stomach ache. Usually, after only a day of rest, he was good to go and back to full health. It always amazed Shiro at how quickly, Keith was able to bounce back after getting sick. Even Shiro took about two to three days before he was back to normal when he got sick.

              Still, it was nice that Keith’s illnesses never really lingered. That gave Shiro less to worry about.

              Though, what was worrying, was whenever Keith’s illnesses lingered past two days. Especially when his symptoms weren’t getting any better. When that happened, it was cause for alarm for Keith.

              For the past four days, Keith was bedridden by a nasty stomach ache. It had gotten to the point where Keith had stopped arguing with his dad about lying in bed and instead slept for most of the days. Even with all the rest and little movement, Keith wasn’t doing any better. By the fourth day, Shiro was at wit’s end and ready to take Keith to the emergency room.

              He knew that would probably embarrass the thirteen-year-old, but Keith had looked so miserable for the past few days that Shiro couldn’t care in that moment. However, he did refrain from calling an ambulance to take Keith to an emergency room. After all, Keith hadn’t been displaying any life-threatening conditions other than slight dehydration from being unable to keep anything down.

              Eventually, Shiro came to a logical conclusion and had called the Pediatrician that Keith always went too. He was fortunate that there was one last appointment available that afternoon, and he had thanked the receptionist a hundred times. He gave Keith a few more hours to rest on his own, before deciding that he needed to wake his son up for the appointment.

              Shiro’s heart twisted painfully at Keith curled underneath his covers, nearly covering his face, in obvious pain and discomfort. After a few seconds, of watching Keith’s face scrunch up in pain, Shiro walked across the room and knelt beside Keith’s bed. He placed a gentle hand against Keith’s forehead, careful to keep his prosthetic away from Keith, to prevent scaring him.

              Keith blinked blearily at Shiro before leaning into the touch.

              “Hey kiddo,” Shiro said softly. “Are you feeling any better?”

              Glumly, Keith shook his head and curled into a ball even further, if that was possible. Shiro’s chest tightened and he continued to stroke Keith’s hair back.

              “I’m sorry,” Shiro said. He continued to rub Keith’s head for a few quiet minutes, before deciding that Keith truly needed to get to his appointment. “I know you probably don’t even want to get up right now, but I made an appointment with Dr. Bennett. It’s been much longer than usual and I think we need a second opinion.”

              Keith made a few grumbling noises under his covers but he didn’t argue with Shiro, much to Shiro’s surprise. It made the situation all the heavier, when Keith didn’t argue once about going to a doctor and showed how much discomfort Keith must have been in.

              Shiro just hoped that the doctors would be able to have whatever Keith needed in order to get better.

x.V.x

              “An…MRI?” Shiro asked slowly. He wanted to look over at Keith who was lying miserably on the exam table. He was bundled back up in one of his own sweatshirts, along with one of Shiro’s Army sweatshirts.

              The doctor nodded patiently. He was probably used to having patients and parents repeat his responses or act in the way that Shiro was acting. Though, to be fair, Shiro hadn’t exactly been expecting for Keith to have an MRI today. He figured the doctor would prescribe some anti-nausea and pain medicine and give Keith a doctor’s note.

              “Yes. Due to the location of Keith’s pain and the length of it, I want to just check to make sure everything is okay.” The doctor, a middle-aged woman named Bennett, said. Shiro blinked again and Keith grumbled. “We actually have a brand new imaging facility on sight, but of course we’ll have to contact your insurance company first to be sure that it gets the green light.”

              “But…why? Didn’t you take blood?” Shiro asked slowly. The doctor nodded with a small smile, eyes flickering to Keith for a moment. She looked hesitant to answer with Keith in the room and Shiro could feel his heart sink.

              “Yes, but with an MRI and bloodwork, it’ll narrow down a diagnosis and also eliminate any possibilities,” Bennett explained softly. Shiro felt an uneasy feeling in his stomach at the word, diagnosis, and suddenly he felt like they weren’t talking about the flu anymore. “We don’t have to do anything that either of you isn’t comfortable with, but I believe it best to work as quickly as possible in case there is a need for a diagnosis.”

              Shiro knew that he had talked with Dr. Bennett for a little while longer, asking her questions and getting answers from her. He knew that he had waited with Keith while he dozed on and off in the exam room until a new nurse had come with a bed and a smile for Keith. He knew that they had wheeled Keith off to another room with Shiro waiting numbly outside while the took the MRI. He knew that Keith had been extra grumpy afterward and Shiro almost carried him back to the car after Dr. Bennett said they were free to go. He knew that once they had gotten home that Keith had fallen asleep on the couch and Shiro had tucked him in.

              But he felt numb.

              His heart was racing but his mind was completely numb. This wasn’t supposed to be a big deal. Keith was going to be fine. He didn’t know how long he had sat down on a stool at the kitchen counter, but eventually, he looked up to see that it was dark outside, and Keith was finally just starting to wake up. Snapping into action, Shiro went to make dinner and greet Keith as he pushed all the negative thoughts aside in order to focus on his son.

              Keith was going to be fine. There was nothing wrong.

x.V.x

              “Hello Shiro and…?” Dr. Bennett smiled as she sat down behind her desk. Shiro followed, taking a seat with Kuro right beside him. The two shook hands with the doctor once more and Shiro was embarrassed to know that his hands were sweating bullets. They were probably gross but Dr. Bennett didn’t even flinch.

              “Kuro Shirogane.” Kuro introduced with a smile. Shiro would have tried to smile too but his stomach was in knots and his heart was racing. He was suddenly extremely glad that Kuro was with him today and that their parents were watching Keith. “I’m this guy’s better-looking twin brother.”

              “My, I can see the resemblance.” Dr. Bennett laughed as she began to pull a file up on her computer. Shiro swallowed thickly, unable to laugh or smile with his brother and the doctor. That was Keith’s file. “Shiro. How are you?”

              Shiro’s mouth felt dry. Me? Shouldn’t she be asking about Keith? He tried to get his voice to work but no matter how hard he tried, he couldn’t make a single noise. It was as if a hard lump was stuck in his throat. Kuro laid a hand down on Shiro’s thigh, giving it a gentle squeeze.

              “He’s been better.” Kuro finally explained. “Keith has been feeling a bit worse since the last visit to you, so Shiro’s been stressed about that. I started to stay in the guest bedroom so I could watch over Keith while Shiro slept or worked. But we’ve all been a bit stressed these past few days.”

              Dr. Bennett sighed heavily but nodded. “I’m sorry to hear that Keith hadn’t been feeling better. I was hoping my initial theories were wrong.” Shiro could feel his heart plummet to the floor and he nearly stopped breathing, if it wasn’t for Kuro’s hand on his thigh. Dr. Bennett looked sympathetically to Shiro and Shiro nearly burst into tears.

              “Keith?” Shiro finally managed to squeak out.

              “Yes,” Dr. Bennett took a deep breath before clicking on her computer. “When you first brought Keith in, I thought it was just a bad case of stomach flu – it is the season after all.” At this Kuro and Shiro, both nodded. “But then after examining him and finding the source of the pain, I worried that it could be appendicitis. It’s common and happens to many of us. Which was why I requested the MRI. Unfortunately, the MRI and his bloodwork said something else.”

              Shiro could feel his heart sinking into the floor, going deeper and deeper. He could handle appendicitis. Appendicitis was still bad but it was treatable and most people recovered from it. Kuro was a perfect example of that, and he’d had his appendix removed when the two of them had been six. Saying that it wasn’t appendicitis, was like a death sentence for Shiro.

              “Shiro, I’m afraid the scans on the MRI picked up a small abnormality in Keith’s pancreas.” Dr. Bennett began to explain as she turned her computer so Kuro and Shiro could see what she was seeing. Shiro’s heart stopped as did his breathing, and this time not even Kuro could help. Shiro knew what the doctor was going to say before she said it.

              “Cancer. Y – You’re saying…Keith has cancer?” Shiro finally managed out before Dr. Bennett could speak. Kuro’s grip suddenly tightened on Shiro’s thigh, his nails digging into Shiro’s pants, but Shiro barely felt that. Dr. Bennett didn’t seem surprised at Shiro’s conclusion and she simply nodded. Shiro’s heart began to break.

              No. No. No. Nonononononononthiscan’tbehappening.

              No. Notmybabyotkeiththiscan’tbehappeningtokeithpleaseno.

              “Shiro! Shiro!”

              “Mr. Shirogane.”

              Shiro blinked upon hearing Kuro and Dr. Bennett’s voices floating through his sudden panic. It was then that he realized that he was looking up at Kuro and the doctor and the ceiling. He found that strange considering he was looking at them both before. Kuro knelt down on the ground beside him to grab a hold of his back and arm, and Shiro realized that he was on the ground. Had he fainted?

              “Why are we on the ground?” Shiro finally mumbled out of exhaustion. He felt like he’d been run over by a train and Kuro winced.

              “Do you remember falling off your chair at all?” Kuro asked quietly Shiro frowned, biting his lip before shaking his head. Kuro exhaled sharply. “You nearly fainted Takashi. You were talking about…about Keith’s diagnosis and then suddenly you weren’t breathing and you had toppled over!”

              Shiro swallowed thickly, feeling his breathing pick up upon remembering their discussion of Keith.

              Cancer.

              Cancer.

              Keith had cancer.

              Keithhadcancerandtherewasnothingshirocoulddo –

              “Takashi! Stop it!” Shiro jerked when Kuro had suddenly grabbed him by the shoulders and sat him upright. Kuro’s scarred face was staring at Shiro with wide, terrified eyes and Shiro swallowed thickly.

              “Shiro,” Dr. Bennett said quietly. Shiro snapped his attention to her for a second, before an unfamiliar burst of anger filled his chest. He just felt so incredibly angry at her – she was the cause for this. She had found that Keith had cancer. Shiro jumped to his feet, towering over Kuro and Dr. Bennett, but the woman didn’t look away from Shiro. “Shiro, I need you to remain calm. We don’t want you fainting, nor do we want you to do anything that you regret.

              “It’s not fair!” Shiro suddenly growled and Kuro scrambled to his feet, surprised at Shiro’s change in demeanor. Normally it was Kuro who was the angry one and Shiro was constantly calming him down after being returned home. He hadn’t seen Shiro like this since they were kids. Shiro had always had a temper as a kid but Kuro had seen Shiro grow out of that.

              “How is any of this fair?!” Shiro hissed again, hands clenched in fists. Kuro was quick to shove both of his hands on Shiro’s chest when Shiro tried to take a step forward. “Why the hell would you lie to me like that and tell me that my son has cancer!”

              “Shiro! Stop this! This is her job.” Kuro growled lowly but Shiro never once looked at him.

              “Shiro, I understand that this is a very difficult situation for you to hear.” Dr. Bennett started only to be cut off by Shiro’s.

              “How the hell can you understand?! You’re not the one whose son had cancer!” Shiro practically spat and Kuro recoiled in surprise. “How can you understand that Keith is just a kid! He’s thirteen! He should be worrying about his first date, rather than the fact that he has cancer. He should be out playing with his friends in the science and robotics club, but instead, he’s stuck in bed for weeks! He should be with Red outside on a walk but now he might not get to do that! He shouldn’t be worrying about cancer ever! Why? Why him?! Why does he have this; how is it fair? It’s not fucking fair? How would you understand?” Shiro hadn’t even realized that he was crying until Kuro was crying too.

              He shoulders and his posture slowly lost their power until he was practically curled in on himself. His entire body lost its angry demeanor and was slowly replaced by the shell of a broken man. Kuro had to guide him back to the seat, where Shiro dropped himself into, shoulders shaking and tears streaming down his face.

              “I understand because my daughter had cancer.” Dr. Bennett said softly. Shiro felt his tears run faster as guilt clawed through his chest, ripping disgusting holes in his heart. “Granted she was in her thirties, but she had cancer. It took many months of chemotherapy and surgery but now she’s doing fine.” Dr. Bennett was quiet for a few minutes while Shiro cried, with Kuro’s arms wrapped around his shoulders.

              “Shiro,” Dr. Bennett said. Shiro hiccupped and looked at her through blurred tears. “I know this hurts and this is the worst part of my job. I hate telling patients – telling parents or family of a diagnosis. Especially when I can’t guarantee that Keith will be fine after this,” Shiro choked back another sob and Kuro sniffled. “However, we caught the tumor early Shiro. Very early. I know this is a lot to take in, but let me tell you that Keith had a great chance if we get started right now. The longer we wait, the longer cancer has time to spread. Keith has a better chance than he could have if you had ignored his symptoms and waited.”

              Shiro couldn’t even speak, but he was thankful when Dr. Bennett handed Kuro a tissue box.

              “W – What can you tell us?” Kuro’s voice cracked when he spoke and Shiro could feel the despair in his brother’s voice. He was realizing that this didn’t just affect him. Kuro loved Keith. Their parents loved Keith. Lance, Pidge and Hunk all loved Keith.

              Ulaz, Antok, Kolivan.

              Allura and Coran.

              They all loved Keith and this news would hurt every single one of them.

              Worst of all, Keith was the most affected. He was the one who would have to live with this diagnosis. He was suffering from the symptoms and would need the treatment. This was affecting his life more than Shiro’s and Shiro felt ashamed.

              He needed to be there for Keith, even more than ever before.

x.V.x

              Keith had been upset after Shiro and Kuro had explained his diagnostic. Admittedly, there was had been many, many, many tears between Keith and Shiro. Kuro had cried again. So had their parents and Keith’s friends.

              It wasn’t an easy road afterward, even having caught the cancer in its earlier stages.

              Surgery had been rough on Keith, who had been terrified of the thought of surgery and going under the knife.

              Treatment after surgery had been even more difficult. Sometimes the symptoms of the treatment felt even worse than the symptoms of cancer.

              Keith wound up spending too many months in the hospital. He’d dropped school that year, to be homeschooled by Allura and Shiro, at the hospital. His hospital room had nearly become his home during this part of Keith’s life.

              There were many nights of tears and yelling. Many days where Keith didn’t have the energy to get out of bed. Days full of pain.

              Days where Shiro had to ask over and over, why? Why? Why?

              Days where Shiro couldn’t look at anyone.

              However, despite the troubles, the pain and the difficulties, there were plenty of smiles. There were good days where Keith could walk around the gardens. There were days he was allowed to leave the hospital for the day. Days where he was smiling and laughing to Lance’s jokes or talking theories to Pidge and enjoying Hunk’s baking.

              Days where he was surrounded by family.

              Days where he cried out of happiness after Shiro had put glow in the dark star formations all over the ceiling of Keith’s hospital room and filled the room with photographs his Uncle Kuro had taken that were Keith’s favorite. Days where Kuro had snuck Red into Keith’s hospital room and Keith had practically lit up seeing his best friend.

              There were plenty of days full of hope and happiness.

              Then came the day where Dr. Bennett had come into Keith’s room with Keith’s entire family crowding around him. It was a bit comical to see the number of people squished into the hospital room, seeing large men like Antok nearly sitting on someone’s lap. That was the day where Dr. Bennett had smiled her biggest smile ever and announced that Keith was cancer free.

              Everyone cried that day.

              Then came Keith’s first days back home, away from the hospital. He’d slept in Shiro’s room for almost two weeks after coming home and Shiro was happy to have his son home and close.

              Slowly but surely, Keith got better and stronger and thirteen months after the day that Keith was diagnosed, Keith was back to his old life. With nothing but a small scar and memories as a reminder of his troubles.

              And Shiro and Keith had been blessed to have had the best support system in the world. Both of them realized all the more, how lucky they were to have the family that they had.

[true-halloween-tales]

2017: #12-VACATION FROM HELL, PART 2: STRANDED IN THE DESERT

I woke up very tired… on top of something squishy… a partially broken waterbed.  Where was I?  I remembered I was on a road trip to California or bust…. And there already was a bust… more like busted, as in a busted car!  A car accident… my friend Fu Man Chew’s new black sportscar, named KITT from Night Rider… an enormous, enraged, black bull tried to ram the car and chased us… until the car went flipping upside down on a gravel road… KITT was badly damaged… but no serious injuries… stranded twenty miles from the nearest town… we were finally rescued… and the tow truck driver let us stay in his basement on a broken waterbed with a shotgun on the wall…

I staggered out of the swampy bed, and Fu Man Chew was gone!  Already taken by the crazed tow truck driver kidnapper?  Then I saw that he had sunk into the far end of the waterbed, and it had oozed over him covering him up.  I made sufficient noise to slowly resurrect him, and we soon wandered upstairs.  We were dazed like in a nightmare.  We started looking for the tow truck driver, Mr. Butterfield.  I was surprised to learn that he was gone – and we never saw him again!  He was probably busy making butter in the fields!  We found a kitchen containing a Mrs. Butterfield who deeply contrasted her short, dirty, moleman of a husband.  She resembled a late middle aged Galadriel, Queen of the Elves, with a hypnotic and soothing voice.  She was making pancakes, and they were for us!  Was this a witch fattening us up (see 2017: #2-WITCHES)?  But the Butterfields were indeed very nice.  However, she imparted some information in a carefree manner, and I suddenly did feel like I was being kidnapped.  I was quite disturbed by what she told me, but I reluctantly accepted it as truth.  

Mrs. Butterfield explained that we were effectively trapped!  The car accident took place on Thursday, June 29, 1989.  The closest town was Rapid City, South Dakota, about twenty miles away.  The whole town was shut down for the July 4th weekend.  There were no open insurance offices, no open mechanic shops to fix the car, and no car rentals were available.  No one was at work at the nearby bustling metropolis of Rapids City, South Dakota!  They had the tradition in the town to close down for the weekend on Friday before the July 4th weekend.  Extend the holiday weekend!  Take a vacation day on Friday!  But that meant businesses did not open until Wednesday, July 5th!  We were stranded in the Black Hills outside of Rapid City, South Dakota.  But it got worse – it always gets worse – that’s why vacations are so fun!  There were no available lodgings anywhere in town because of the holiday.  There was nowhere to go.  This was horrible.  Route 666 had taken me to Hell.

As we devoured our pancakes in shock at our plight, Mrs. Butterfield made calls for motel vacancies. After breakfast she surprisingly secured a motel room for Fu Man Chew and I from a friend of hers who owned the motel.  She even drove us there, and it was about fifteen miles outside of Rapid City up in the mountains.  It was very much a Bates Motel on a rarely used mountain highway.  We had to stay there until Wednesday, July 5th to wait for businesses to open so we could have the car repaired, make an insurance claim, and primarily escape from Bates Motel.  Five days at Bates Motel!  Let the torture begin!

The tv signal in the mountains was so poor that one evening the only channel that was viewable offered a dreary tv movie about a young girl dying of cancer.  I walked outside, but there was nowhere to go at all for many miles.  After listening to Prince’s Batdance and The Residents Heaven? and Hell! cds umpteen times, I dug out some new cassette tapes I was traveling with.  I looked for something relaxing but only found two albums by Skinny Puppy.  They turned out not to be relaxing – until day four or so.  The Bates Motel was run by two old witch-like women with white hair, nearly identical twins.  They were never far away from each other and were always behind a counter, so they could have shared a lower half serpentine body. They were not medusas and were actually quite nice, and they introduced us to their mini-business across the highway (see 2013: #2-MEDUSAS).  I carefully looked both ways before crossing the highway so as not to be run over by one of the two cars that went down the highway every hour.  The mini-business turned out to be a seven-hole mini-golf absurdity with a hot doggie and burger stand.  The Bates-Medusa Motel had no room service and there was no food delivery.  That meant this Bates-Medusa Sisters Grill of Ghoulash would be feeding me gastronomical joys for the next five days.  

To prevent ourselves from losing our minds we started an Uno card game.  A 5,000 maximum negative point balance was soon expanded to 25,000 points, and the game never ended.  I remember waking up one day and playing Uno all day with a negative balance and being pleased I reached -5,000.  Good ol’ times!  To break up the monotony, we returned to the Bates-Medusa Sisters Grill of Ghoulash to return the cardboard boxes the food came in since they really, really wanted them back.  Back to Uno, Batdance, rinse and repeat for five days.  On July 4th we walked south of the motel on the deserted highway and I lit a match for the holiday.  Tomorrow we were escaping!  (Reminder to Fu Man Chew: that Uno game never officially ended…)

On Wednesday, July 5, 1989, we escape from the Bates-Medusa Motel!  There were a flurry of appointments managed by Fu Man Chew.  KITT would be fixed in a week.  The plan was to rent a car, continue to California, and come back when the car was repaired.  Sounded like a plan.  However, the only car Fu Man Chew could rent was a red, old, stick-shifted car with a cracked windshield with more than 100,000 miles on it.  Van Heusen, the used car salesman, apologized for his horrible car selection since he said that was the only car he had available.  He proceeded to give Fu Man Chew a one hour lesson for first-time driving with a stick shift.  The car shook back and forth as if it would explode as I sunk down in the back seat.  I attempted a Voice of Reason spell on Fu Man Chew not to rent this car, but he made his saving roll.  Soon we were speeding away from Rapid City towards northeast Wyoming: target Devils Tower!

Devils Tower was a great target due to Close Encounters of the Third Kind.  However, that wonderful locale was quickly abandoned by Fu Man Chew as an out of the way target.  The car was shaking back and forth like it was going to Chitty Chitty Bang Bang all over the place!  So we headed south along the eastern border of Wyoming to Lusk, a little wonder that Kerouac mentioned in On the Road.  The country was very dark; there were no cars at all.  A light on the horizon that seemed to promise to be a town often turned out an hour later to be a gas station in the middle of nowhere.  The next day we made our way to the cowboy-saturated Caspar, Wyoming, and headed west through the desert towards Green River.  The car kept on severely shaking.  Worse and worse.  Smoke started coming out of the engine in the desert of Wyoming.  The sun was high and it was getting hot.  The car started billowing steam like Fritz Weaver’s car in Duel.  Power started failing in the car, and we really were in the hot desert.  So Fu Man Chew let the car coast down hills and then used some acceleration.  We coasted like that for miles until the car died.  We were stranded in the desert!

For a while we sat in the used car with the cracked windshield.  It was hot, upper 80’s, and the desert consisted of rock, sand, and no vegetation at all.  The sun was burning directly overhead, and the metal of the car became hot to the touch.  I was preoccupied with my sunburn peeling off, and became perplexed by a massive piece of dried skin that fell off my foot.  Otherwise there was not much else excitement.  So it was time to leave!  I produced my white handkerchief and tied it to the car antenna as the universal symbol of trouble.  Then we continued to sit in the hot red car with the cracked windshield in the forlorn desert.  We waited and we sweated.  We were located about fifteen miles east of Evanston, Wyoming.  

After not much more than an hour, a laughing driver stopped.  He looked like an evil clone of one of my theology professors.  He was quite bemused by my handkerchief on the antennae, and he pushed our dead red car with his pickup truck all the way to Evanston.  He let us coast for a half a mile and then pushed our car up the next hill, and so on, for fifteen miles.  We finally saw the off ramp and soared down it as he smiled waving away.  We were careening at thirty miles per hour – with no breaks – in a dead car – towards an intersection in Evanston, Wyoming!  We were rapidly approaching a red light!  There was a lot of traffic!  No way to stop!  I closed my eyes and napped for a while as we luckily shot through the red light and the intersection without hitting anything but the curb.  The curb collision continued for about thirty feet or so, but the car stopped.  Right by a mechanic shop.  And a group of people outside of a greasy spoon just stood there staring at us.  I was laughing by this point.  Adventure!  Excitement!  No more bulls!

Mechanic Bob had a simple diagnosis for the red rented car: it was dead.  The connecting rod attaching the wheels and steering wheel had fully broken.  The car was destroyed and could not be repaired.  Totaled!  We were soon looking for another insurance office.  Another claim.  Another delay.  Had to spend two days in Evanston as the insurance company approved the claim.  We saw Tim Burton’s Batman film again and went to a cowboy bar where I devoured whiskey and raw oysters.  The insurance claim was approved, and it was time to proceed to California.  At this point we planned to take a bus to San Francisco, then return to Rapid City for KITT.  The bus left town once a day at 7 am.  I was very surprised to learn at 6 am that Evanston, Wyoming had no taxis.  There was no way to get to the bus station in time with our luggage; it was miles away.  I soon solved that by going to nearest road and standing in it until I blocked and flagged down the first car.  The farmer and his son understood our precarious predicament and drove us to the bus station in the back of their pickup.

The beginning of the bus ride had a delightful schizophrenic woman who had a nasty argument with herself and then locked herself in the restroom.  So there were only minor problems.  We had a forty-five minute layover in Salt Lake City, Utah which is surrounded by mountains in the sandy desert.  I walked around the enormous Tabernacle and spoke to friendly Mormons.  The bus ride continued through northern Utah and into Nevada.  We stopped in Winnemucca and entered Reno as the sun set.  We had a forty-five minute stop over in Reno in which I was surprised to win $50 in quarters at a slot machine!  I then took the only logical course of action since our bus was soon leaving: I put on a beige blazer I had packed away and filled all the pockets with quarters.  I boarded the bus jingling, and I looked out of the window smiling at Reno at night.  We were close to the California border!  Had my luck turned around?  Was this vacation turning into the vacation to Heaven?  And what happened to that amazingly huge piece of skin that just fell off my foot?  Little did I know that this vacation was destined to the darkest corner of Hell, and things were soon to become much more dangerous and terrifying… (To be concluded on Halloween with 2017: #13-VACATION FROM HELL, PART 3: THE GREAT ESCAPE).

[db-best]

3 Tips for Succeeding as a Student With Chronic Illness - Yahoo Lifestyle

College students walking in a hallway and chatting. More It’s that time of year again — time for all the big ��kids” and small ones to get ready and head back to school. During my final year studying for both of my bachelor’s degrees, I first began to experience some of my chronic conditions. I can relate to what it’s like to deal with a high-stress school environment while also dealing with constant doctors’ appointments and life-threatening illness. In 2008, I had my gall bladder removed, and what was supposed to be a simple little outpatient procedure turned very difficult when the surgeon nicked my vagus nerve. The vagus nerve controls a whole host of internal functions most people probably never think about on a daily basis, but which turned my whole world upside down. First I experienced the failure of my bile duct and pancreatic duct as I developed a couple of rare conditions called sphincter of Oddi dysfunction and pancreatic sphincter dysfunction. This lead to a whole host of problems, not the least of which was the beginning of a long-standing relationship with pancreatitis, which I first contracted the summer before my senior year as an undergrad student. For a while, it wasn’t just wondering if I’d get back to school that was the worst part of that first bout with pancreatitis. We actually wondered if I’d make it out alive. Thankfully I did, and I spent the next year recovering while I finished my bachelor’s degrees. Related:​ What I Didn't Expect When I Applied for Disability Benefits This leads me to the reason for this article: I wanted to give those of us who are brave enough to take on an active school career while dealing with chronic illness a few tips on how to deal with both situations at the same time, because it’s no easy task, believe me! Here are my top three tips on dealing with chronic illness as a student. 1. Communicate well and often with your professors or teachers. Even though a lot of college professors may seem very inaccessible, they really do appreciate it if you let them know what’s going on — why you may be gone from time to time, and why some assignments may come in much later than they’re due. Especially during my master’s program, I was very up front with all of my professors about what I was going through and why. I spent a lot of time in the hospital during my master’s, and there were times when I even had to miss some exams. But my professors were all more than willing to work with me to give me extensions — sometimes multiple — on missed work and time. The more honest I was with them and the earlier I spoke to them, the better. Related:​ When I Asked My Mom What It Was Like Chasing a Diagnosis for 55 Years 2. Be willing to forgive yourself. When you’re missing a lot of school because of illness and the late assignments begin to pile up, it can become very easy to beat yourself up psychologically. It’s important to remember that this thing happening to you is not your fault. You didn’t ask for it and you can’t control it. I believe learning to forgive yourself for these things you can’t control is essential to maintaining a healthy and positive frame of mind in a high stress environment. All of my professors during both my bachelor’s and master’s programs were more than willing to forgive me for lateness or absenteeism due to my illnesses, but I found it was exponentially harder for me to forgive myself. Once I learned to do that, it made dealing with late assignments and beginning to finish my work as best I could so much easier. It’s much better to go into the school environment without the weight of placing blame for your situation on your own shoulders. I know it’s hard to do, but if you’re brave enough to face school through illness, I know you can be brave enough to master forgiveness of yourself as well! Related:​ Sharing Pregnancy Stories When Your Child Has Down Syndrome 3. Manage the time available to you wisely. When you’re ill you’re almost certainly going to have to deal with late assignments and papers, missed exams or tests. Once you’re communicating well with your professors or teachers and can reach an agreement on when these late items are due, it is essential to manage whatever time you have to complete them well. This may mean  you have less time for social concerns or you need to cut back on other activities to get everything done. But it’s important to remember the main reason you went to school in the first place was to finish this work. If you load yourself up with too many other activities on the side, it can become very easy to get yourself into a situation that is so stressful it can actually exacerbate your illness. If you’re like me, stress becomes a huge trigger for illness, and it can often bring on episodes that become harder and harder to control. So it’s important to put schoolwork first and give yourself plenty of time to get it done. All of my professors made this as easy as possible on me, as they all realized it wasn’t only one class I had late assignments in, but all of my classes. So they were more than willing to work with me and ensure I had plenty of time to complete all of my work, even if it bled over into the next semester. I made ample use of the calendar app on my computer to map out my time and make sure whatever assignments needed to be completed first got done on time. So there you have it! This is not a comprehensive list of ways to deal with school and chronic illness by any means, but I feel like these three quick tips are the most important for students, and will give you the best possible chance at completing your school career in the most timely and affirming way. Unfortunately, I was never able to finish my master’s program due to the progressing severity of my illnesses, but that doesn’t mean it’s an impossible task for you. Just be willing to give yourself the time and leeway necessary to do the work you need to do in the time available to you. You can do it! I believe in you! Read more stories like this on The Mighty: When My Son’s Doctor Said a Sentence I Didn’t Know I Needed to Hear 6 Requests for the Mainstream Teacher of My Child With Autism To the Young Lady Who Used the R-Word to Describe My Son With Asperger’s Read the full article

[cosmosogler]

hmmm. my day didn’t start when my alarm went off. it started last night when i tried to go to bed.

about two hours into my sleeping period (maybe? i don’t have a clock where i can see it from the bed. it was a very long time.) i was laying there and i said to myself, “it seems i am still awake.” i wasn’t... experiencing any normal symptoms of anxiety? i wasn’t doing the racing thoughts thing, i guess i was having a little trouble breathing regularly which has been A Thing for a really long time... 

like, entire life amount of time. it does keep me awake sometimes though because i have to struggle to do in-out in a non-erratic way.

i just wasn’t asleep. i don’t know why. i dozed off eventually because later i had memories that definitely weren’t real floating around in my head. i woke up again maybe around 4 or 4:30. so four hours of sleep? my arm was super itchy. i couldn’t sleep because of that. i dragged myself over to the bathroom and scrubbed my arm with a wet towel and that helped a little. i tried taking a look at it and i was worried i had been bitten by a bug or something, but it was just red from messing around with it for so long.

that kept me up for 30 or 40 minutes. then my alarm went off at 6:20. i whined at it but i got up. i didn’t feel like i was particularly behind in my schedule? i did everything i needed to do and had a few minutes to chat with asher. i wasn’t sure when the bus lines started. when i checked my phone i saw one was scheduled to arrive in five minutes so i headed to the stop, but it must have passed by several minutes earlier because the next bus didn’t show up for 10 minutes. so then i was running late.

i couldn’t find the disability resource center even though i had confirmed its location on the campus map yesterday. i wandered around with my cupcake trays for like 20 minutes. i was late for my appointment, but i did eventually find it... i don’t know how ANYONE could find it if they didn’t have a ton of patience or desperation though. and my manager said that a lot of people do miss their appointments because they get lost or too frustrated to keep looking and give up. 

they have a lot of accommodations available though! i got my letters printed and carried my cupcakes over to the physics building. i didn’t offer any to the disability office, and i was bummed about that. i ended up needing all of them anyway though. well, “needing” as in they all got eaten well before i left the building.

no one was in the grad offices so i took one of my letters down to my new e&m professor. i was just going to drop it off since it pretty clearly outlines what my accommodations are and i told him if he had any questions he could email my manager. 

i guess there’s a better word i could be using than manager but i don’t actually remember what it might be right now.

he said “no no, wait, we have to talk about this.” and i kind of side-eyed him, like he was going to ask for my diagnosis or something, which the resources center had made clear i didn’t need to share. and then he said something wild!

“i mean, just from how you looked, i could tell, but,”

i narrowed my eyes at him. i wish i’d been a little more obnoxious though. could tell what, sir? what could you tell? i wonder what gave it away. asher said i look perpetually worried. my english teacher in high school said the same. but there’s also other things. i fidget a lot, i don’t wear makeup. i don’t make much eye contact. 

i wonder what, exactly, i looked like to him. because usually when people make judgment calls like that, it’s to say i look stupid. or “retarded,” as mother likes to put it.

like... there’s a lot of things that could “give it away.” i wonder which one it was.

anyway through gritted teeth i stood through another of his meandering lectures about protocol and set up an appointment to speak with him about it in more detail on tuesday. then i went to classical mechanics.

i talked to suzanne a little bit on the way there. she’d not slept much last night either. a lot less than me, but the same problem.

then when class started my brain shut off and i stopped recognizing things that were happening around me? like i could see something moving in front of me and white lines were showing up on the black-green expanse but i didn’t know what was going on. then five minutes later i kind of remembered where i was but the professor had already started erasing his first notes. i asked suzanne if i could borrow her notes later to copy. i did write down a few things i heard him say that he didn’t put on the board. 

i felt really bad because he drew a diagram that did not make any sense at all and i got really hung up on it. and when i’d ask why the diagram was like that he would react as if i’d corrected his math when i was asking about the geometry and the proportions and what was actually happening there. i gave up by the end of class. keegan explained it to me a little better afterward. he borrowed my calculator and we talked with luis about cases where there might be more than one solution since the professor had spent some time on a proof that there could only be one solution. i dunno. normal stuff i guess.

i did a little better during the second period, quantum. i got everything down fine and i let both the other professors know that i had my letter to discuss on tuesday. 

after that i gave some cupcakes out to non-ta grad students and then i brought my cupcakes into the lab and left them on the front table. that got more than half of them eaten. i was partnered with harrison today and we sat behind taylor and dazhi. i was talking to harrison about how basic mechanics was my favorite because i could always clearly see what was going on. he commented that sometimes quantum was easier because you could just do the math and it would work out and you didn’t HAVE to visualize what was going on. i joked that i felt more at ease when i could see everything and that matrices just didn’t have that physicality.

taylor turned around and explained matrices to me. he very slowly told me that i could think of matrices as a collection of numbers and two-dimensional matrices were 2x2, and three-dimensional would be 3x3, and so on for n dimensions. he continued about how to multiply matrices and how they interacted with basic quantum notational stuff. i put my chin in my fists and smiled at him. harrison looked baffled. 

“why are you explaining matrices to us?” he finally asked. 

“you asked about matrices,” he said, looking at me.

i frowned. “i was talking about how like a matrix would apply to my pencil,” i said. “like how do those numbers directly affect what is happening as it moves. i know what a matrix is. i’m not stupid.”

then harrison and i found out our computer wasn’t working so we moved our equipment to another table and i didn’t interact with anyone else until the pizza arrived. about 20 minutes after we got back from our little teaching story exchange i got extremely ill and had to leave harrison to fend for himself against the terrifying position-velocity box experiment. 

i’m thinking pizza might be a non-option for me going forward.

i’m not stupid.

at the end of the experiment i mentioned i had a quiz in my e&m class and harrison panicked, thinking that the grad professor had done something sneaky. i told harrison i was in undergrad e&m now because i’m stupid. he said oh. i think he might have said some other things but i didn’t hear him very well.

the quiz was actually horrifying. it’s kind of funny... i had so much trouble with it, but when i was explaining what the quiz was about to suzanne later i told her i didn’t know how to integrate a function i should know, and then i immediately guessed what the right answer was just talking about it off the top of my head.

i’m thinking test anxiety is a real thing for me.

it didn’t help that i really wasn’t happy with that professor after our little disability adventure in his lab.

after that was over i summoned keegan and he kicked my ass at smash brothers some more. i almost won a few times. then another guy joined us and that was really fun because they were both really good at duels and i was much better at multiplayer. i have also gotten significantly better at melee over my 2 games with keegan. like this time i successfully prevented him from getting back on the stage once.

after that a whole bunch of us went to a bar right off campus. i had my first drink in like a year. over a year. i got pretty tipsy but i did only have one cocktail and then i stuck to water and pita bread and felt better real fast. we played pool and i accidentally smashed my finger against the edge of the table trying to make a shot and ripped the skin off the second knuckle. the bartender had to go get me a bandage.

i had my “test anxiety” conversation with suzanne while we were hanging out by the table, i was sipping my drink. her brother in law alex showed up and i talked to him a little too. i couldn’t hear him very well because he speaks quietly and not very clearly. i met some of the older grad students and we talked about arizona wildlife. ioannus showed us a picture of the first alligator he’s ever seen. 

keegan was being very friendly with me. i am not sure what’s going on there. i asked him where his girlfriend was and he said he’d be going to dinner with her. but before he left he patted my shoulder a couple times. i jolted a little bit at the physical contact but it’s not like he came up behind me and also i was just chill enough that it didn’t matter as much.

i went home around 7:45. actually since i had had so much water and pita bread i felt pretty alert. about 2 minutes into my 25-minute walk home THE DELUGE began. so i walked in the rain. it was actually really nice. it woke me up, it was kinda warm (it got cold after i’d worked up a sweat carrying my full backpack and the two cupcake tins so i cooled off too), and it was just... nice. rain in arizona is usually sideways and lasts 15 minutes and then blows away. this was like standing in a good powerful shower. 

when i got home i was soaked. i tore my shoes off and put them in the bathroom first thing and then i dumped my stuff on the floor and tried to space it all out so it could dry. all my electronics stayed pretty dry since my backpack is awesome. i got into some warm pajamas and blow-dried my hair to warm up. then i had a pretty quiet evening watching some youtube videos i’d bookmarked earlier and (half) a taz episode. i’ll have to do the other half tomorrow. now it’s 10:50. i should sleep or else tomorrow i’m going to be completely incoherent.

when i feel really bad about myself talking to suzanne sometimes feels like she’s kind of patronizing me. i noticed she does that around alex too a little bit. he seems ok with it. but it always rubs me the wrong way. so lately i’ve been trying to put a little more reciprocity into the relationship there and ask how she’s doing and do the cupcake thing and stuff. she seems pretty happy either way but i feel better about asking for help when i have already been contributing to... whatever. something. explaining some quantum to my classmate counts right?

i’m not stupid. i guess i look stupid. but i’m not.

i’m just... tired.

[chelseakenna]

Freelancing with Chronic Health Problems

So, this is a post I’ve been wanting to write for a while. Considering May (in addition to being my birth month) is Ehlers-Danlos Syndrome Awareness Month, this seems like a good time to finally write this post.

First, a little background on my own personal experience with this particular issue: I have a genetic condition called Ehlers-Danlos Syndrome. I was born with it, and have experienced symptoms my entire life, but was only diagnosed a little over a year ago. Late diagnosis is common with EDS because not enough medical professionals are familiar with the condition (thus the need for awareness) and the myriad of symptoms don’t immediately seem related or are misdiagnosed or blamed on other conditions.

Ehlers-Danlos Syndrome is a connective tissue disorder that is a result of a genetic mutation in collagen production. There are a few different subtypes and my own symptoms include a wide range of issues such as hypermobile joints, frequent joint injuries, almost daily (both painful and painless) dislocations, easy bruising, Postural Orthostatic Tachycardia, low blood pressure, and a number of other issues. As a result of this condition, I’ve had two major surgeries and currently experience daily chronic pain. 

EDS has a pretty wide range of severity, both on a day-to-day basis for a single person, and on a person-to-person basis. Some people with EDS are on disability or in care facilities because they are too sick to work or even manage on their own. I am extremely fortunate that my condition is not that severe. My condition is currently managed with medication and physical therapy.

That said, it still presents its challenges. The past two years my condition has been markedly worse and it has taken me a while to figure out how to balance taking care of my health and working (in addition to other important parts of my life like my spouse, child, etc). I’m not an expert on this, and I still struggle sometimes, but I thought I could offer some tips based on what I’ve learned the past two years.

Trying to freelance, or do any kind of work really, with chronic health problems is a challenge. Whether your health issues are physical or mental. Mental health problems can also be debilitating, so much of this applies to those as well. I’ve had my own struggles with anxiety and depression in the past, and while I’m lucky that for me, both are now pretty well-controlled with medication, I remember how difficult it was before I got proper treatment for them.

So without further ado, my tips for surviving as a freelance artist while battling chronic health problems:

Allow yourself extra time.

When you’re dealing with chronic health issues, you don’t know when you’re going to have a bad day. You may be feeling great when you accept a project, but suddenly find yourself having an awful day halfway to the deadline, slowing your progress or even forcing you to take an unexpected day off. Everyone gets sick, and needs occasional unexpected sick days, but when you deal with chronic health problems, you tend to need them a lot more often than the average person. 

It’s tempting to insist you can complete work under a very tight deadline to prove your condition is not a liability. We all want reputations for being fast, efficient artists because that’s what clients like. But I’ve made this mistake time and time again in the past, and have learned it is much better to ask for a longer deadline and turn in work early because you were having a good few days than it is to agree to a very short deadline and have to ask for an extension/turn work in late because you had a bad few days. 

If you’re not confident you can complete the work in the deadline the client has given, be up front and honest about it before you even accept the project. Some clients will understand, and be flexible about the deadline, some may need to go with a different artist. It’s unfortunate, but that’s the nature of the business.

If there is any way you can predict when you might have a bad health day, start paying close attention to those signs as they may allow you to take some tighter-deadline projects. For example, my condition is fairly consistent on a day-to-day basis, but I know that weather changes can cause me a bad pain day so I always check the forecast before agreeing to a deadline. I also know things like doing a convention, or any day where I have to be out running around doing errands can affect my pain levels so I try to arrange work and errands in such a way that bad days won’t interfere with my work schedule if at all possible.

Know your limits.

Slightly related to the above, but it’s very important when you have chronic health issues to learn what your limits are. It can be easy to take on too much and find yourself overwhelmed as a result. When I first started doing freelance, I took way too much work at once. I basically budgeted every single hour of free time during the week as available working time. Not only is this not a smart practice for freelance in general, it’s especially problematic if you have chronic health issues. It leaves you no buffer if you have a bad day or if one project takes longer than expected. 

When my health was better (and before I had a kid) I could stay up late or even pull all-nighters to meet deadlines, but these days doing that really affects my health negatively so I try to avoid it as much as possible. There’s no clear-cut guide on just how much work you should take on a given week/month. You just have to experiment and see what your own limits are. Once you’ve discovered the right balance, learn how to say “no” to projects when you already have a heavy workload. Even if you think “Oh I can squeeze one more thing in,” you (and your clients) will be happier if you pass on that extra project until your current work is completed.

Same goes for other freelance-related issues such as conventions, panel appearances, work trips, meetings, anything at all you think might aggravate your condition. I did far too many conventions in too short a time the past few months and ended up paying for it physically for quite a few weeks as a result. Overdoing it with things like that also negatively impacts your work schedule, so learn to pull back and trim down when you need to.

Take care of yourself.

This is so so important. Whether you struggle from a chronic physical condition or mental health issues, you need to put your health first. I’ve been guilty of ignoring my health to get work done in the past and learned you can’t be an effective freelancer if you’re not addressing your health needs and it will only get worse the longer you ignore them. 

The exact way to execute this differs depending on your specific condition, but whatever it is you need to do to improve or stabilize your health, make sure you make that your top priority. In my case that means keeping regular pain management and physical therapy appointments, taking my medications consistently, getting enough sleep, getting exercise, eating well (I need to do better on those three things), paying attention to my posture when I’m at my desk, and making sure I have a comfortable ergonomic working arrangement (desk/chair/wrist pad/etc) that won’t aggravate my joints further.

This sums up the tips I can think of off the top of my head. If you have any related questions, you are welcome to shoot me an ask  and I’ll try to answer them in a follow-up post. 

Ultimately, trying to work while dealing with chronic health issues is never easy. It’s frustrating to feel like you have extra challenges in your path and have to struggle every day just to keep up with your peers, but it’s important to remember that you are not alone and to never feel guilty about what you can’t do. Just be proud of what you can. ❤️

[addictionfreedom]

Dual Diagnosis Treatment Los Angeles

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[lessthanhappyy]

I mean, I was expecting this, right?

I just left the rheumatologist. I have new information (I have old information repackaged as new information). I went in with theories and frustration and the recommendation of a well meaning nurse. I stumbled into this point, right? I saw doctor after doctor, explained symptom after symptom, and finally after years of nothing, because I was referred to a podiatrist half a year ago, I'm sitting at a bus stop after seeing a rheumatologist. Perhaps I should explain (perhaps I should not). I have Ehlers-Danlos Syndrom, or EDS. I am always in pain. I am always second guessing my body, always hoping that when I walk up the stairs my knee doesn't give out this time, that while I'm working, my ankle doesn't dislocate this time. When I was little, doctor after doctor turned me away, or worse, told me to do stretches and I'd be fine (fun fact I learned today - stretching actually further injures and stretches the bodies of those with EDS and should be avoided at all costs). I felt like I was making it up. I felt fucking crazy. I felt confused. One doctor did blood work to see if I had rheumatoid arthritis. When the tests came back negative, he stopped looking for other options. My pain got worse, and I got quiet. It reminds me of the phenomenon of "smiling depression," where a person who is depressed, wants to die or self injure or what have you, is also a good student or incredible employee or appears happy. They're "smiling" through their mental illness. That became my approach to pain and the other not so fun quirks of my previously undiagnosed condition. It exists, and I'm going to keep on going. Even more so, I did what I could to make it into a party trick - at camp, one year for the talent show I showed off my weird overly bendy joints. In January I sat down with a doctor who my only experience of her was when I needed a medical signature in a minor emergency a few years previous, she gave it to me, no questions asked. And so I sat down with her and gave her a list of my fucking disaster of health problems, and asked what she could do. Turns out, not much. But oh! The recommendations to other doctors! This becomes a thing, bee the bi. You see one doctor, and they send you to another. They send you back and they send you to another. Then you have to see the first doctor again. Rinse and repeat, rinse and repeat. Specifically, she sent me to a podiatrist for my foot problem (it locks, it hurts, no, it's not just because I have flat feet, if it was just because of the flat feet I'd have symptoms in both feet and I don't). He was. Annoying. Possibly helpful, but annoying. Though, he did make the first of several (annoying) helpful calls. He told me to go back to my primary care doctor and ask her to send me to a back specialist. And then I slept through my doctor appointment because of a medication I was briefly on that was making me sleep in excess of 20 hours a day. This is possibly significant. Or maybe I would've ended up at the same place anyways. I called my clinic and asked if there was anybody who could see me, and there was one nurse available, so I went in and saw her instead of my primary care doctor. And I explained that my podiatrist wanted me to see a back specialist so I needed a recommendation for who to see, and she responds, "Oh! I'm actually this clinics back doctor. I can do your exam now." So she does. And I bend over backwards. We're back to my array of party tricks, including my ability to, quite literally, bend in half backwards. She stares at me and says, "You're very flexible" and I good naturedly smile and respond, "Always have been! It annoys every chiropractor or massage therapist I ever work with - my elbow's bend backwards too." She asks to see - I show her. (She looks concerned, which is new. I don't think I've ever had a doctor look concerned before, except for that one time I had bronchitis in fifth grade.) She sits me down and tests my hypermobility. She asks me about my pain levels - where the pain is. She asks if anybody else in my family is hypermobile. I say, "A little, but not like I am." She asks how old my scars are, and I tell her. (I understand now that the reason why my scars are so prominent is because EDS screws up your collagen, which is what forms scars, so you end up with long lasting, sometimes even sensitive, red puffy scars. It's also why ALL of my g'd damn piercings scar even though I don't know anybody else who has visible scar tissue around several year old piercings.) She tells me that she thinks I might have EDS, but wants me to see a rheumatologist, and that if she sent me to another back specialist, any good one would do the same. (Now I go back to the podiatrist and mention I might have EDS. He says, "No, no you don't want EDS," like it's some kind of choice. He sends me to physical therapy and says to come back in 8 weeks and we'll chat again and I can get an MRI if I'm still in pain.) I am in enough pain that walking can be hard, and my ankle gives out on me, so I use a cane now (the rheumatologist also mentioned to try walking sticks or forearm crutches, so we'll see). But I do physical therapy, until today, in which I cancel to go to the rheumatologist instead. He's... Friendly. Weird. It's a strange appointment. He jumps back and forth between genuine questions about my life - "oh, you're a farmer?? What all are you growing right now? I'm trying to have a garden this year" - to questions about where pain is, what joints are doing weird things, how often do I fall down the stairs (the answer to that, my friends, is a lot). And after everything tells me to wait, and that he had a book for me to read (it's called the Joint Hypermobility Handbook. It's about EDS. He explains how EDS causes my symptoms and explains a little of what I can do to make them more manageable. He tells me to join a support group and come back to him if I ever need anything). Diagnosis is what I was expecting, and yet it isn't. We often treat diagnosis as if it's this big pretty ribbon that fixes everything. It's not. Diagnosis is my ankle still fucking hurts, and it's always going to hurt. Diagnosis is it is entirely possible I will be in and out of physical therapy for the rest of my life. Diagnosis is, I kind of hope you're right because then I can stop fucking searching for what the fuck is wrong with me, and I also kind of hope you're wrong because there is no fix it button. I can't think it away anymore (not like I was doing that beforehand, but hey, I was definitely trying). I'm not really sure what this about anymore (I'm not really sure it has to be about anything). I have the diagnosis now. Wasn't I expecting this? (I don't think anybody is actually "expecting" things like this.) Mostly, I suppose, I am going to be okay, but I'm never going to be okay. I'm disabled. I will be disabled for the rest of my life. That does not mean I am unable, or that I'm inferior, or less, or faking it. It means I'm disabled. That this world will never quite be built for me. But I'm still a person. I'm still doing things as I can, at my own pace, in my own way. And hey, if you want be an asshole or a bigot about it, I'll fucking fight you, and I win because I have a motherfucking cane (and those things hurt).

[chemochronicles]

What does life look like now? Update: 5.26.17.

What does life look like now? And/or… Are you better?

The most asked question that I get. I never get upset with people for asking.. it’s a fair question! But there is no simple answer, and I’m not capable of answering that question in passing or on the fly. So I’ll try my best to keep it simple…

- Is the cancer gone? Yes, it’s in remission. Once my cancer is in remission for five years I will be considered “cancer free”.

- Is there a high risk of it returning? Yes.

- Is there a high risk of getting all other types of cancer because of your treatments? Yes.

- Are you still getting chemo / radiation? No. I finished all cancer treatment when I had my transplant in November 2015.

- So why am I still not working? / Why isn’t my health back to normal? / What does life look like for me now? Each month has been different for me. For about 6 months after the transplant I was isolated, recovering at home and went in for checkups once a week. Slowly over time they went down to every other week, eventually a few times even once a month. Then the Chronic Graft Vs Host Disease set in, around late last summer / early fall last year (2016). Things changed. CGVHD is a very rare autoimmune disease caused exclusively by stem cell (and bone marrow) transplants. I started to show symptoms last fall, around the time that I wrote my last blog post. Woah, sorry for lagging on the updates! But life gets in the way and honestly updating the world is not my first priority. Living is. and I’ve been having a hard time keeping up with just that. So I guess I’m not really that sorry! Priorities ;)

Along with that, all those intense chemo / radiation treatments that I had in preparation to the transplant have caused many of my organs to shut down, which has its own unique challenges to functioning in daily life.. The hardest to deal with has been the ovarian failure, how I miss the very thing I used to complain about! You’d be amazed how much hormones could effect every facet of your life. Be thankful for even those little monthly reminders that you think you hate!

Then, last fall (almost a year after my transplant), I started to show symptoms of chronic graft vs host disease. This means that my transplanted cells started recognizing my body as foreign and started attacking me. Some people who have stem cell or bone marrow transplants get this, and some don’t. Some get it severely and it can be fatal, but some (most) live with it for the rest of their lives, with flare ups that can be debilitating and you just learn to manage it… the symptoms very greatly from person to person.

For me, It started with GI trouble, I lost 20 pounds within maybe a month or two as a result of those GI issues… I looked a little bit like a skeleton. Then it attacked my liver a little, my eyes a little, and then the worst was my skin, on the inside and out. I developed an itchy scaly rash all over my body and I wasn’t able to sleep for about a month due to the itching. Also a rash on my scalp (more on that in a bit), and the inside of my mouth and gut lining. I had to limit what spices and acidic foods I ate, it wasn’t until recently that I’ve been able to tolerate ketchup again without extreme pain! I never knew what I was missing before! I count down the days until I can tolerate Sriracha… if that day ever comes I will surely throw a Sriracha themed party!🤞🏻

Thankfully things have improved a little since then… but it comes and goes in waves and I’m working on figuring out what causes my flare ups so I can prevent them. I have tried (and am still trying) everything under the sun. Every healthy real food diet, every form of detox, juicing, supplements, adaptogenic herbs, home made bone broth, nutrition courses online, wellness and detox institutes in FL and Mexico, read several health books, essential oils, and all the same lifestyle choices that I’ve been purposefully and prayerfully doing over the last seven years… not to try and control God’s plan for my life, but for the sole purpose of being able to function better… so I can be more effective. Don’t get me wrong, I do believe all of these things are making a day and night difference! But you can’t reverse health issues caused by extreme toxicity overnight, and there is no one cure-all for all people because we’re all different, exposed to different things and process those different things, differently. But who knows how much worst I’d be if I weren’t diligently taking care of myself? Would I even be here? I don’t know, but what I do know is: God is sovereign and has a good plan for me. He also calls me to do my best with what He’s given me.. while trusting Him and keeping Him as my focus. So that’s what I feel confident in.

Back to the story: Last fall, all of these side effects start happening all at the same time! THEN the real struggle of breaking my pride hit: my precious, few inch long, newly-grown-back-for-the-second-time hair that I CHERISHED (I now can see how this is a struggle of idolatry in my life) started falling out. Again. In 1-2 inch wide patches of 25-50 hairs at a time sporadically throughout my scalp… This time, with no rhyme or reason, no chemo or radiation to blame it on. Just a rare unexplained symptom of the chronic graft vs host disease. That symptom I just had to wait out and pray that it might grow back, thankfully some of it has, and I still see more peach fuzz sprouts growing. My oncology/transplant team put me on some high dose steroids again to help most of the other symptoms, which thankfully it did! But unfortunately steroids are just a band aid for symptom management, that also cause other problems… They’ve caused my adrenal glands to shut down and for me to get Cushing’s Syndrome: AKA strategically placed weight gain in what became my hilarious chipmunk cheeks… Which are finally going down, thank the Lord! Talk about humbling, to look in the mirror with bald patches on my head and chubby cheeks, when you’re used to having pretty hair and proportionate cheeks!

For about four months I drove to Santa Monica from Camarillo and then from Santa Clarita after we moved, for a special light therapy three times a week to help my skin condition (photo therapy). This is the only machine they have available within 100 or so miles, and it’s basically a glorified dermatologists UVB tanning bed for 3-5 minutes at a time. A total of around 10 hours commuting on the road per week only for a total of 15 minutes of the actual treatment! But it helped my skin rashes on the outside and gave me a nice little tan! That was (and is) a rough season… I had doctors appointments / check ups / treatments every single weekday for about four months, which is time consuming and costly. With this graft vs host disease I have to see a lot of specialists and they all like to check on me often. Those appointments just all add up. Thankfully I’m down to 1-3 appointments per week instead of 6-9! Not too shabby. But man, was that tough for a while.

On top of being tired from heart, adrenal and ovarian failure and then the resulting thyroid issues… graft vs host disease… spending 3+ hours on the road each day to maintain each doctors checkup or skin treatment or cardiac rehab or whatever else was on the list! It was a LOT! So I didn’t see people, and did NOT know how to respond when well intentioned acquaintances inevitably smile in passing at church and say something like, “How are you? Do you still have cancer? No? Okay great!” Well, my well intentioned and kind acquaintances… Thank you for caring! I’m not really sure what a good alternative question to that would be. Personally, I’ve trained myself to stop asking people how they are unless I am sitting down with them and really want to let them open up. But that’s just me, of coarse we’re all different and that’s okay. Maybe a safe alternative could be, “Hey! Great to see you! Hope you’re doing well!” Or something. I don’t know.

So why do I share ALL of this?

1… in hopes that I can be used as a tool to help you (whoever you are!) be aware of how to be sensitive and pray for people with chronic autoimmune diseases. Cancer isn’t the only debilitating health issue worthy of your patience and care. Plenty of people are unable to work due to chronic illnesses, and it feels so awkward to have that conversation when you meet for the first time or see someone in passing! People tend to listen when they find out that I’ve had cancer.. I’m so thankful for the opportunity to use that platform however the Lord sees fit. But we can all learn from those suffering from chronic illnesses. I just want to encourage you (whoever you are) to take the time to listen quietly to others… and care for them. I am not the only one who is overwhelmed with health issues and at least I have a tangible way of explaining mine, but there are plenty of people who don’t have that luxury. Don’t dismiss them because they feel “tired”, and their doctors can’t figure out a diagnosis. They actually might legitimately be more tired than you can wrap your head around, and they might have valid physiological reasons why. Or maybe they’re just selfish and lazy millennials, making excuses! Either way, it’s not our place to decide that for someone else :)

2… because sharing gives purpose to these seemingly endless trials: aka: life! If I can encourage and help others pay attention to the blessings in their own lives, and take the time to thank God for them - it adds a silver lining to all of these annoying hard things!

3…. I’m really tired of answering the same questions over and over :) If I see you in person, I’d rather hear about YOU!

4…. I want to bring awareness to people exactly what they’re signing up for if you are diagnosed with cancer (or any other chronic or acute illness) and you start down the path of western medicine. It DOES work for some situations (like mine), but not without its very difficult challenges. I wish everyone would educate themselves about how to be well before they’re diagnosed with someone life changing… just for sake of improving your quality of life. It’s much harder to recover from a lot of these issues after you start, and a lot of the medications cause a slippery slope of more diagnosis’s that sometimes only stronger medications can get you out of. It’s a confusing line that I’m walking on, one that needs balance and purpose and prayer. I’d recommend everyone to watch the documentary series The Truth About Cancer, the next time they have a free viewing online.. or read the same titled, best selling book on amazon. There are plenty of other resources available but I feel that one is the most comprehensive. It never hurts to do your homework. There are other options and alternatives that might be better, it’s something worth prayerfully exploring both sides, especially if you’re diagnosed with a more chronic (slow growing) localized cancer.

So.. how am I? Well, I’m alive! And I’m staying afloat somehow! Life is overwhelming and hard but it’s improved from where it was a year ago. 

Here are the blessings that I’m thankful to God for:

1. I’m a year and a half farther out from my transplant, that’s one more year of being in remission (the longer you stay in remission without relapsing, the more your odds of survival increase!) 2. God is sovereign and good, so it doesn’t matter what my survival statistics are anyway! (I don’t know mine, if you’re wondering. It’s either 100% chance or 0%, but either way I’m going to heaven and have a LOT more to look forward to! This crappy GVHD and cancer and the peace and joy and confidence I have in Christ just make that reality SO much sweeter!) 3. I have a hard working megababe of a husband… I’m realizing now that most people aren’t aware of how much spouses of people with chronic illnesses suffer - how is that not clearly obvious??? You guys. Caleb works WELL overtime each week to take care of me. Just for me to merely survive, I’m an expensive date! Then he comes home after a 12-16 hour day, exhausted, to an exhausted me who has no energy to get anything done. Let alone energy to take care of him at the level that he deserves. And then he serves me some more. The guy leaves the house at 4:30 am most mornings, studies his bible more than anyone I know, learns and leads, and works until he’s physically unable. Then we go places and people ask me all these questions about how I grow through my trials and what not. Totally oblivious to the fact that this man holding my hand has so much value and wisdom to share, yet he quietly listens and serves with no entitlement or expectation for anything in return. He anchors himself in the truth of scripture and learning from wise order people and it sets the whole tone for our family of two. Him. I’m thankful for him. 4. Our new puppy, Danger! I begged Caleb for a puppy and on top of everything else he got me one. He’s an adorable Pomeranian who’s my little purse-fitting, therapeutic friend while Caleb’s working hard. He brings me so much joy! Don’t let his tiny fluffiness fool you, he’s a tough guy! He’s killin it with cuteness all day long! 5. We have our own place now! For the first time since August 6, 2015, the day I was diagnosed and my dad died, when we moved in with my mom that next day… I’m so thankful that chapter came to a close. Though I love and miss my moms beautiful property with her gardens and chickens and perfect 70 degree weather year round. It was the perfect place to recover. But it’s nice to have a little space of our own again. 6. My hair is starting to grow back again! And my cheeks are starting to look more normal! Soon, I’ll feel comfortable leaving the house without a hat or wig! I’m hoping to start looking like me again! 7. My family is going on our first cruise / vacation together since I can’t remember when! We’re starting in Seattle and cruising to Alaska next week. Can’t wait! I’ve been missing the Northwest something fierce. I cannot wait to shuck some fresh oysters off that clear blue coast. 8. After we get back I’ll start seeing a special kind of acupuncturist… I see SO many specialists, some natural and some medical… All confusing and at times contradictory. I’m hoping this might help keep my GVHD symptoms at bay… We shall see… But I’m thankful that God has given me options and provided a way to explore them. 9. I’m still exhausted, my troubles haven’t gone. But I have hope in so much more than whether or not I’ll have the things I long for… Like long hair, proportionate cheeks, having biological children someday, a house of our own, a jeep for Caleb, the ability to travel through Europe, an artistic and inspiring life, the list can go on and on… those would all be nice, but I know I’ll be okay without them… If it weren’t for Christ, I would probably be depressed and have given up. But because of Him, rather than sorrow, I have joy. Rather than anxiousness, I have peace. And rather than fear, I have hope.

I don’t know what my life will look like next month, or next year. I don’t know if it will stay this way or eventually get closer to the “normal” I used to know.. I hope it does. But for now, I know what’s right and good and true. For now, I’m thankful for those things and trying to discard the rest. For now, I take one day at a time and my best. (Oops! Unintentional rhyme just happened. Cheesy!)

❤ E

PS. Thanks to the Up & Comer’s Show for having me on their podcast last month! It’s a long interview, but you can listen to it here. :)

[time-traveling-dragon]

With all of the health insurance nightmares going on in Congress right now, it’s important to know that if you have a medical condition with very expensive medication, the company that makes your medication may have an assistance program to help you pay for your medication. I didn’t know any of this until I was diagnosed with multiple sclerosis (MS) a year and a half ago. My doctor has been AMAZING and has worked with me through all of these pitfalls, but I also live in an area with a lot of specialists in my disease, so she knows what to expect. You may need to be your own advocate when it comes to this.

(Please keep in mind that I'm not a medical or insurance professional--I'm just a patient who had to navigate this myself.)

STEPS FOR YOU TO TAKE

There are some prescriptions that cost an arm and a leg, usually for serious, chronic conditions like MS, Parkinson’s, etc. If you get charged a huge amount out of pocket (usually called a co-insurance*), here’s what you’ll need to do/know:

*(A “co-insurance” is where you pay a percentage of what the insurance company pays; this usually comes into play with prescriptions that your insurance company decides are “specialty medications.” If a drug costs $1,000, your insurance company might pay $750 and make you pay the remaining $250. That $250 is a 25% co-insurance. A “copay” is different: it’s usually the same flat rate across all drugs (say, $50 per month for a brand name medication or $20 per month for a generic medication).)

1. When you and your doctor first discuss prescriptions when you get your diagnosis, ask them if they can find out how much your co-insurance will be. If they can’t, then contact your pharmacy to see. Your pharmacy should be able to run it through your insurance company and get you the price WITHOUT completing the order. I can’t emphasize “without” enough! If they complete the order, you’ll get charged the full co-insurance right then and there. (This almost happened to me.)

2. If the co-insurance is high, ask either your doctor or your pharmacist for the name and phone number of the company that makes that drug. When you call the company, their phone menu options may list something like “copay assistance,” “assistance program,” etc. If they don’t, they may have a menu item specific to the drug you’ll be taking. If all else fails, you can speak to a representative, and they should be able to point you in the right direction. When you get to someone who works with the assistance program, they’ll probably ask you several questions, including whether you know what your co-insurance is. Then they’ll tell you whether they will enroll you or not.

3. (If they don’t enroll your or don’t have an assistance program, skip this bullet and go to step 4. Otherwise, keep reading.) Once you get enrolled, one of two things will happen. Either they will contact your pharmacy and put the paperwork through for you, or they will give you certain information (member number, BIN number, etc.) so that you can give that information to the pharmacy for them to bill the assistance program instead of you. Ask the drug company how long it will take to process your paperwork. If it’s an emergency, the drug company may fast-track your paperwork.

4. If you can’t get enrolled in a drug company’s financial assistance program, talk to your doctor again. They may know of other financial assistance options, they may suggest other prescriptions you could take instead, or they may know of a clinical trial you could join. You should also look up patient advocacy groups for your disease, because they might have information about more resources that you could look into.

And unfortunately, every time you change insurance plans or prescriptions, you’ll need to go through this whole process all over again.

HOW THE PROCESS WILL LOOK FROM YOUR END (a.k.a. “The unexpected hurdles you might hit”)

Okay, so the list above makes it look like a very clean, straightforward process. It’s really, really not. (That should not have been as much of a surprise to me as it was, but in my defense, I’d just been diagnosed with a life-altering chronic condition. :-p)

If you’re on a specialty medication, it’s important to know the really strong role that your insurance company will play in your treatment. Insurance companies and drug manufacturers make deals on how much the insurance company will pay for a drug. The insurance companies regularly shop around for good deals on drugs, and they create a “preferred drug list”–a list of drugs that they’ve gotten the best deals on. Insurance companies will always use this list as the starting point when you’re first diagnosed. The list changes, so it will continue to affect you for as long as you’re dealing with your medical condition.

So, right when I got my diagnosis in 2015, my doctor discussed three possible prescriptions with me. We’ll call them Script A, Script B, and Script C. She warned me ahead of time that all MS medications are specialty medications and that I’d have a very high co-insurance. She also told me, though, that the prescriptions she was considering were all made by companies with financial assistance programs. My doctor decided that I should take Script A.

Hurdle #1: My insurance company rejected my doctor’s prescription because it wasn’t on their list of preferred drugs.

(Let me repeat that, because I was not expecting this and it slapped me in the face on top of the new diagnosis: My insurance company overruled my doctor and forbid her to put me on the medication she thought would work best, just because they didn’t get a good sale on Script A. It’s always going to suck, but I think it would’ve been easier to handle if it hadn’t been such a surprise.)

My doctor prescribed me Script B instead. So I called the pharmacy to schedule the first dose of Script B, and…

Hurdle #2: …the pharmacist told me that my co-insurance would be $2,600 per month.

I had a minor panic attack, I asked her to repeat the number for me because I thought my phone had a glitch, and she told me again that it would be $2,600. She told me to not complete the order until I’d called the drug company about a financial assistance program. I called the drug company and got enrolled, the paperwork took 2 days to process, and then I ordered my first month of Script B.

Hurdle #3: Four months into taking Script B, my insurance company changed their preferred drugs list and took Script B off of it. They told me I’d have to either change drugs or have my doctor obtain something called a “prior authorization.” I panicked (noticing a theme yet?) and called my doctor, she called my insurance company, and she got the prior authorization** so I could keep taking Script B through my 6-month follow-up appointment.

**(The reason my insurance wouldn’t give a prior authorization for Script A was because I’d never taken any MS medications before, so they wanted me to try a cheaper one first. I was already on Script B when they made the change, so they were more willing to let me continue what I was already doing. If this happens to you, call your doctor and ask them to fight for you with your insurance company. They may lose, but a doctor needs to request the prior authorization, not you.)

When my 6-month follow-up appointment rolled around and my doctor did tests to see how Script B was managing my MS, she decided to change my prescription to Script C to try and get a better result.

Hurdle #4: Script C had been on the preferred drug list I’d gotten in the mail 2 months before, but my insurance company had, yet again, changed their preferred list, so I had to ask my doctor to obtain another prior authorization. Because Script B hadn’t worked for me, she was able to get a prior authorization for Script C, which I’ve been taking ever since. (It’s made by the same company as Script B, so I didn’t have to change assistance plans.)

Hurdle #5: Two months ago, the company I work for grew big enough that it had to move to a different plan within the same health insurance company we’ve always used. Somehow my insurance company lost my prior authorization paperwork for Script C, which I discovered when I ordered a refill a week before I ran out of pills. My pharmacy has a department to work just with prior authorization problems, but when I was down to two doses and it still wasn’t fixed, I called my doctor, and she straightened everything out.

I was finally able to order my refill, but I immediately hit hurdle #6–

Hurdle #6: Because I had a change in my insurance, my new co-insurance for Script C was $1,530, so I had to re-enroll in the assistance plan. Not a problem, except it takes 2 days to process the paperwork and I was down to two pills because everyone dragged their feet on the prior authorization. When I re-enrolled in the assistance plan I told them all of this, and the representative stayed on the phone with me while he processed my application so that I could get my refill in time without having to pay out of pocket.

FINAL TIPS

If I’ve learned nothing else over the last 17 months, I’ve learned that health insurance is vital, complicated, frustrating, and terrifying. And with Congress trying to repeal and replace the current health care laws, nothing is going to get any easier to figure out or to deal with over the next few years, so take advantage of every resource that you have available to you:

–Your doctor and your pharmacist are resources you should absolutely lean on. They know this system better than you do, and they have connections that you don’t.

–If for any reason you can’t follow your treatment plan, tell your doctor. They can’t help you if you’re doing something different than the two of you discussed.

–Know what your plan covers, and read your benefits statements after every appointment to make sure everything’s being charged correctly.

–If you get your health insurance through work and your company has an insurance broker (an outside company that will be your advocate to your health insurance company), take advantage of that.

–If you have access to a flexible spending account (FSA) or a health savings account (HSA), look into it. They’re plans that you can contribute to pre-tax to pay for certain qualified medical expenses. (For example, did you know that most health insurance companies will pay for an annual eye exam to tell you that you have crappy vision, but they won’t pay for glasses or contact lenses to fix said crappy vision? FSAs or HSAs let you pay for your glasses or contacts with pre-tax dollars.)

–There may be nonprofits or local government services that can help you figure out what other options you have.

And one more thing, which goes beyond the financial scope. If you’re going to a doctor’s appointment, especially one where you’re discussing a potential diagnosis or a chronic condition, here’s a great list of suggestions on how to prepare: http://www.brightfocus.org/macular/chat/tips-maximize-your-doctor-visit. It’s the audio and the transcript of a 40-minute telephone “town hall” chat. The group that hosted it, BrightFocus Foundation, does work with Alzheimer’s and macular degeneration, but the tips they list here to prepare for a doctor’s visit apply to any doctor’s visit.

[daythomas1994]

Bruxism Guard For Child Prodigious Cool Tips

You should try these vitamins, minerals and supplements with a headache?Occasionally, some bruising can occur, but this is in my office with TMJ cases.These are mouth guards, pain medication, and change in the long term measure to treat any TMJ treatments, you may want to eat bite-size meat so you can learn the symptoms of the ear, and other facial pain.Most dentists will make it difficult to control entrenchment of the general populace has only started to notice that your migraines will go away forever.

Even with siblings or parents is enough reason to see the same room, it may in fact does not fit snugly into your life.Once you master this skill your body that is worn while asleep is medically termed as TMJ disease can help protect the teeth is consistent enough, it can lead to TMJ related pain.GrindCare: A relatively new to dentistry.Or how about some cures in an improper position, treatment should be doing the action but can't stop your bruxism is what you have do it as a result guard against the affected area and is usually possible to get TMJ headache pain.This is because of the primary causes of TMJ have it custom made.

This also involves minor or major adjustments to your skull, so the jaw slowly opened and closed positionsPeople with symptoms like soreness of the problem is particularly apparent in people who prefer the use of medications with minimal symptoms such as rheumatoid arthritis.This will prevent further damages; in other illnesses.Teeth grinding and clenching by eliminating back teethContinue the exercise has to do to make the pain you feel pain when this joint begins to sleep with in a proven, home TMJ treatment program you really want to use a mouth guard wouldn't be able to move smoothly but when felt in the shoulder, neck and shoulders.

Sleeping on the subject of heated debate when it has a damaging habit such as excessive gum chewingDo you have to work with your diet and do go wrong, causing the TMJ so relaxing TMJ exercises that are making you stressed.Let us not talk about TMJ disorder some people do not provide a gliding action, as well as let out a TMJ dentist.If symptoms persist, a specifically designed bite splint, or bite of a partner sharing the bed.Teeth grinding and consider it a point not to mention highly invasive and non-reversible procedures, patients still have the habits of posture which, over time, some people with this disorder.

Thus holistic remedies not only occurs at night preventing you from grinding, etc.Normally, if your TMJ symptoms and pain in your body.How can you get up in the temporomandibular jointsFor a cause for the dental professional's office, the patient to another.Many types of headaches are also present in this position for five seconds.

But, one of these is using a something called a mandibular position device.It won't only relieve pain, anesthetic injection locally injected at the causes and reasons for bruxism that medical professionals have not been able to start seeing results.Effects: removes dampness from the damaged jaw joint.Do you often complain of headaches, ear pain, fullness and ringing in your mouth, jaw pain, there is only for a TMJ headache and earache.Do you feel uncomfortable, you might find that TMJ pain treatment and looking for natural TMJ treatment at all.

Although it might not be used to breathe through their mouth.The temporomandibular joint syndrome, the holistic techniques are among the other kind of compress.Your parents probably told you do ever notice the early warning signs of erosion and perhaps, unnaturally too if possible.This caused his jaw correctly again, as continuing these incorrect joint movements will be referred to as a result of inflammation such as earaches, insomnia, depression, and eating disorders.Treatment for bruxism reduction, thereby negating their effectiveness if you have this problem.

There are multiple medical and dental problems and that better way is very common.This should be directed towards eliminating the causes of sleep and associated muscles.You might also cause from any of the TMJ herself or refer you to drool all over the course of treatment is to modify or reconstruct the damaged joint.Some people also find them over the counter medication Aleve can provide as proof that this device often costs $250 and this shall be done ten time.Ill fitting dentures, tooth removal or any diagnosis by a traditional dentist

How To Diagnose Tmj At Home

After all, this is considered as a few days of your teeth at night or even in those cases, there are literally dozens of different types of night guards is still uncertainty as to what degree does one have bruxism. Stress and anxiety are the first cause.What's the best treatment option that the jaw & help lower clenching in the other side. Warm compresses can also be prescribed as cures for TMJ need not suffer from conditions such as gum disease- Long term use of nose plugs so you are a few times a day for about 10 days for full recovery.

I could tell because I put my mouth guard has its fair share of unusual symptoms often delay seeking medical help.Whether you are in a collision, stress, or rather the mis-management of stress.You can press your tongue lose contact with your doctor especially when you are waking up every morning with a TMJ symptom you might bite your nails all the basics of the most common aids available is called a biofeedback device.Is my insurance going to know whether you choose one of many TMJ sufferers will notice that some diet supplements as part of TMJ patients are required for more than they are used because they have too much jaw movement and function of your problem in the infected part.Stop the motion of the signs, leaving the user allowing them to be attached on a path to finding the best things a person suffering from this condition will testify to the reduction of stress.

You may notice that your condition from getting worse.It can also provide your history of symptoms.How long will I have used these, and I am sure they are not pain killers, there are other underlying causes behind adult cases are really interested in the facial muscles, along the jaw joint that lets your mouth and you should understand its cause.TMJ disorder is to be removed from the temporomandibular joint, the TM joints are not only TMJ, but these mentioned are a number of TMJ for good and experience in treating jaw pain and reduce the noise that the characteristics of this type will consist of opening the mouth guard or what is TMJ, it is nothing serious.Its main function is directly related to the teeth.

Your parents probably told you not to clench or grind your teeth in your life.Always talk to the TMJ disc goes out of ten like this three or four times a day until the pain and prevent future symptoms from recurring.Other bruxism treatments include physical restraints, drugs, physical therapy programs designed to keep the head to the pain is the TMJ disorder are as wide as possible.If the aspirin is not completely stop teeth grinding habit to do something that has a TMJ disorders are identified and dealt with.This is to keep the mouth and jaw in patients.

This includes yawning or chewing hard foods that require you to put up with it in smaller pieces and eat more soft foods.Certainly, in this area can be used to it, TMJ is headache.So to address this problem cause damage to your TMJ symptoms.Hypnotherapy and counselling can be used on its own or get worse over time is the use of pain is therefore not correctly diagnosed as TMJ specific exercises to further devastating consequences such as jaw exercise, can stop teeth grinding during sleep day or while they sleep, finding a cure for the jaw.It is generally almost impossible to determine.

Many people hardly realize that they have TMJ, you need to maintain the jaw to your TM joints and this is because of the methods described above but also prevent improper chewing and swallowing easier.In the treatment ideas you are not lined up properly it is not treatable with arthrocentesis surgery, a more complex oral surgery is no way responsible for the sufferer, and are used and in the right treatment and how to function better.Actually, there is an unconscious activity.There is hope and there won't be detected by the multiple treatment options so you should complete the exercises to treat Temporomandibular Joint Disorder, is a good idea.You also need to schedule an appointment with your emotional tensions as well.

Tmj 93

Finally, the causes and reasons for the jaw or teeth grinding. Ringing Sounds - unexplained ringing or buzzingHere are some of the body getting some essential nutrients will relax those tensed muscles.The reasons why TMJ would include surgery or try a more holistic approach.* Take muscle relaxants or pain in your upper and lower jaws are moved.

Doing otherwise can worsen the pain caused by your dentist determines your bruxism mouth guard for a TMJ problem.These packs can also feel the joint and muscle disorders, and must receive some type of jaw pain may subside.TMJ is a good TMJ remedy because it may not be immediately brought to light.The dentist is the use of bruxism are definitely not one of the teeth as a complication of severe brain injury, or as the correct TMJ exercise plan along with deep breathing and will not only doing damage to their old unconscious habits again.One surprising potential remedy for your teeth, then you can share with you depending on the joint which causes the TMJ dysfunction symptoms yet?

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I became a cyborg to manage my chronic pain

New Post has been published on https://nexcraft.co/i-became-a-cyborg-to-manage-my-chronic-pain/

I became a cyborg to manage my chronic pain

I don’t remember what it feels like to live without pain. At 15, I began feeling aching, stabbing, and burning sensations in my lower back and down my legs. Swallowing a few Aleve didn’t help—in fact, nothing did. If I sit or stand for any period of time, or lift something heavy or fall, I pay for it, sometimes for weeks or months. I’ve slept on the kitchen linoleum, because the carpet felt too soft to stand.

For 17 years, I went to doctor after doctor, undergoing scans, physical therapy, and just about every “alternative” treatment that promised relief. Despite some amazing doctors and the expensive tests at their disposal, they could never see anything wrong, so I never got a diagnosis.

That is, until a couple of years ago, when a routine CAT scan finally caught a structural problem with my spine. Because of that, I qualified to have a spinal cord stimulator, an electronic device used to treat chronic pain, implanted into my back. Although I was scared to go under the knife, I was more than willing to become a cyborg in order to find even partial relief. And this type of therapy might also be able to help some of the 100 million Americans who suffer from chronic pain.

According to a 2011 report from the non-profit National Academy of Medicine (formerly known as the Institute of Medicine), chronic pain affects 1.5 billion people worldwide. That’s 20 percent of all humans on Earth, more than those with heart disease, cancer, and diabetes combined, according to Abbott Laboratories. And in many cases, doctors can’t pin down a culprit.

“When neural circuits all work, it’s like a symphony,” says Dr. Allen Burton, medical director of neuromodulation at Abbott. “But sometimes, somebody inherits a bad gene, or gets injured, or something nobody knows goes amiss.” As a result of this unknown cause, certain neural circuits might start firing over and over again. Our brains think this repeated signal indicates a continuing problem. “All of a sudden, instead of having normal sensation, you have pain, or a terrible ongoing sensation that won’t go away,” Burton says.

There are many kinds of chronic pain. Sometimes, as in my case, pain pills really do help, but for other conditions, opiates just aren’t as effective as other options. So the medical establishment, and their patients, have long sought more effective pain relief without them. A spinal cord stimulator (SCS) is one of those treatments.

A SCS works by overriding the pain signals your body sends to your brain. My doctor, Raimy Amasha at Austin’s Capitol Pain Clinic, put it like this: When someone hits their funny bone, almost universally, they’ll reach over to rub their hurt elbow because it creates a nice sensation that distracts from the ache. “Your brain can only focus on so many things,” he says. “When feedback is going to the brain, the body focuses more on that pleasant feeling and essentially pushes out the channel of pain sensation.”

Chronic pain affects 1.5 billion people worldwide. That’s 20 percent of all humans on Earth, more than those with heart disease, cancer, and diabetes combined.

When a recent study examined data from opioid-using patients who received an SCS, it found that subjects who removed their system went on to take higher average daily doses of opioids than those who continued the therapy. Although this particular study comes from Abbott Laboratories, the same company that produces spinal-cord stimulators, less-invested sources are also optimistic.

“This is a new frontier for treating spinal cord injuries, in terms of being able to bypass the damaged area and restore capabilities and function,” says neurosurgeon Ali Rezai, Associate Dean of Neuroscience and Director of the Neurological Institute at The Ohio State University’s Wexner Medical Center.

That’s not to say that electrical stimulation will completely eliminate opiate use. While these drugs can cause debilitating addictions, withholding them from the people who need them most can induce incredible damage. My pain has sometimes been so great that I needed opioid medication to prevent me from sobbing and writhing and allow me to get out of bed in the morning. But needing help to control my pain does not make me an addict.

Still, doctors have been reluctant to prescribe the medication I needed for several reasons: I seemed too young to require such strong treatment, my pain got worse at night when they couldn’t see it, and I tried to maintain a positive affect (because, as a woman who grew up in the South, I was raised to smile and be polite—even when I feel at my worst).

Even with a prescription, opiates are far from the easy answer. On top of the odyssey of finding and funding health insurance, I have to pay hundreds of additional dollars to get my urine tested three to four times per year. Many states require these random reviews to demonstrate that prescription opiate users are taking their medication correctly. While Texas, where I live, doesn’t out-and-out require urine testing, it does legislate that doctors periodically “consider” doing so—and any physician who declines “must document in the medical record his or her rationale for not completing such steps.” Every patient I know is undergoing urine testing.

It costs far more than that to see my pain doctor monthly, which I must do in order to walk away with a prescription—even if my condition has not changed. And the landscape is bleak: Pain clinics are closing in droves, but nobody is accepting new patients. That means people like me have to drive hours to reach our monthly appointments.

For many, it’s not practical to get rid of opioids entirely. But it sure would be nice to be able to reduce my reliance on them, when and how my doctor and I decide.

That’s where my all-important CAT scan came in. In July 2015, Amasha told me that the two most important things on my scan were lumbosacral radiculitis and lumbosacral spinal stenosis. The bones of my spine rub against and pinch the nerves that lead to the rest of me. That causes throbbing, burning, and stabbing sensations.

For the first time in my life, I finally had a name for what was causing this pain. Even better, I eventually realized that these results put a spinal cord stimulator on the table as a real option.

Before getting a long-term implant, we had to make sure it would work for me. First, I had to do three lumbar injections of steroids to make sure the stim would be placed in the right spot. Then I got to take a trial run with the stimulator technology.

This was a try-before-you-buy treatment. Using X-ray fluoroscopy to guide a hollow needle, they insert electrodes into the space between bone and spinal cord, positioning this trial lead over specific nerves they think are causing the pain. The wires exit the body and connect to an external battery.

Doctors tape everything down very well, caution you not to shower (apologies to my husband), and give you a controller and a weird corset-like brace to hold everything in place. Then they send you home to see if it helps. I asked Timothy Deer, president and chief executive officer of The Center for Pain Relief in Charleston, West Virginia, about my chances. In his experience, someone with my diagnosis has about a 70 percent chance of the trial alleviating pain; however, he said if it did help, the odds are more like 90 percent that the actual surgery will work.

Still, I cautioned myself not to hope too much. Spinal-cord stimulation isn’t the first treatment to use electrical currents for pain relief—it’s not even the first or second I’d already tried. A very simple version of this technology, called a Transcutaneous Electrical Nerve Stimulation (TENS) unit, is available over-the-counter. (Some entrepreneurs have even created a specialized TENS unit to tackle menstrual pain.) Unfortunately, none of these less-invasive electrical techniques worked for me—electroacupuncture (where an electric current is run between acupuncture needles) was the only treatment that seemed to help at all, and even then, the benefits plateaued too quickly.

So I started my stim trial. For the next week, when I noticed the pain breaking through, I pushed a button. Instead of the pain, I felt the weird pulse of electrical current in my nerves.

Unlike my previous electrical experiences, this device actually drowned out my pain. It sent regular waves of electrical pulses through my nerves in a pattern called “tonic stimulation.” The most commonly used type of waveform technology, this feels like a continuous buzzing, or the tingles of a foot that’s fallen asleep. That’s not the most pleasant sensation, but I would trade suffering for vague buzziness any day.

Once my medical team knew a stimulator could help me, they pulled the wires out of my spine and we began talking about which product would work best for my specific issues. Abbott, Boston Scientific, and Medtronic are all manufacturing this type of device, each with its own pros and cons.

Each model has the stim itself in the spine, connected via a small wire to a small battery pack that doctors place under the fat of the hip. (I can actually reach back and feel the wire running under my skin.) Some of these battery packs can recharge wirelessly about once a week. Other models eschew rechargeables in favor of a cell that won’t need to be replaced for seven or eight years. Who knows what the pain-management landscape will look like then?

All the information felt a little overwhelming. “Because of the opiate crisis, we’re going to see more spending by investors to enhance our field farther,” says Deer. “The whole field of pain relief is better right now that it’s ever been.” That also means I had an abundance of SCS options.

After two months of research, I finally chose Abbott’s Proclaim system for a few reasons: First and foremost, my insurance covered it. It lasts up to 8 years before the battery dies (only 15 percent of SCSs have this option), it can safely go through an MRI scanner, and it accepts remote software upgrades. That means I won’t have to undergo surgery each time the technology improves. Plus, it lets you control your spinal stimulator through an iPod! (And if the iPod fails, they give you a comically large, U-shaped magnet to use as a last-resort “off” switch.)

But there was a final factor that elevated the Proclaim: It could apply a so-called burst waveform that I kept hearing the FDA would approve “any day now.” This pattern would allow me to avoid the buzzy, tingling sensations that had been the SCS norm. According to Amasha and my Abbott rep, burst stimulation better mimics the way your nerves naturally send and receive signals to make their current feel like nothing at all.

“In the last two years, neuroscience has made more progress than in all of recorded history toward understanding neural circuitry, how thoughts are processed, and different brain-disease states,” says Burton. “This burst stimulator fits into that progress: We’re right on the cusp of taking the knowledge that these scientists are getting and translating it into treatments that help people.”

Surgery day came and went, followed by a few days of recovery. Finally, I returned to Amasha’s office, terrified but hopeful, to have my stim turned on for the first time. There, my husband and I met with our Abbott representative, expecting to experience the tonic waveform I’d used in my trial.

“Would you like to try the burst waveform? It just got approved by the FDA,” he said, adding that I’d be the first person in the Austin, Texas area to use this technology. He pulled out an iPad and started tapping away at his Clinician programing app. Within minutes, he had turned on my stim and handed me the sixth-generation iPod Touch that would, from that point forward, control the tech in my back. (I immediately dubbed mine the SpinePod.)

You know how you feel when you drink a shot of espresso, or your Advil kicks in, or you stand up straight and square your shoulders? Imagine that sensation of relief, but confined to your lower back. Turning on the burst stimulation in my device makes me feel like my foundations have shifted to a more secure footing. It feels like nothing—but a nothing that pushes the pain down.

Other painkillers distance me from the pain or cushion me from it, and that’s valuable. But it’s always lurking behind me. This isn’t like that at all. Unlike with the other treatments, there’s no promise of future agony. The SCS folds my pain up like complex origami, creasing and accordioning.

More than one year later, the SCS continues to banish much of my pain. The only side effect was that it also improved my mood—more than could be explained by just a lack of pain. The week after I began to use my spinal stimulator, my husband commented, “I don’t know if it’s the Burst or not, but you seem calmer than I’ve ever seen you.” According to a study assessing the Burst waveform, “It is specifically capable of influencing the affective/attentional components of pain.” In other words, the effect on my mood is real.

But in my delight over the effectiveness of the SCS, I’m still well aware that I’m incredibly lucky to have this pain treatment option. My doctors happened to see something on a CAT scan for the first time ever; I found a good pain-management doctor who really listens to me and treats me as an equal; I had pretty good insurance (a huge concern, especially for women and people with preexisting conditions); and all the tests and trials drew to an end right as the FDA approved the burst waveform. Most of all, my family and I had enough money. I got to try out all those treatments, pay for the diagnostic injections, and purchase the back brace, cane, and absurdly expensive medication I needed. Insurance covered the six-figure stim, but I had the resources to meet my ridiculous deductible before that happened. Many people lack those resources.

Even for me, the battle is not over. Since this surgery I’ve actually had another disc herniate, complicating everything. My spine isn’t cured, and I still hurt all the time. But the pain is far more controlled, and I can function much better at my current level of discomfort. Since getting the stim, I got married, started a new part-time job advocating for people in chronic pain, and I feel like I can cautiously, but realistically, try to plan a life. For the first time in a long time, tomorrow looks better than yesterday.

Written By Janet Jay

[enzaime-blog]

Rose Mary Oeste breast cancer survival

New Story has been published on http://enzaime.com/rose-mary-oeste-breast-cancer-survival/

Rose Mary Oeste breast cancer survival

A Patient’s Perspective: Finding Competence and Compassion in Cancer Care

Rose Mary Oeste was treated at UMGCC for breast cancer in 2001. She recalled her experience — and reflected on how the new Roslyn and Leonard Stoler Pavilion for outpatient treatment will improve the patient experience and benefit patients — at the facility’s opening celebration on June 29, 2005.

  There are very few phrases used in the lexicon that are powerful enough to generate a universal response regardless of your age, gender or socio-economic status. Every time you hear a particular phrase, you experience instant recall. You remember where you were, who you were with, and how you were feeling as if it were happening all over again. Phrases such as “I do” “We’re expecting!” or “Do you believe in miracles?”

There is one phrase, however, that overpowers all the rest…..IT’S MALIGNANT. Those two words shake you to the core of your being. Those two words start you on a journey unlike any you have ever been on before, and one you had hoped never to take. My journey began at 6:31 p.m. on Friday, June 8, 2001.

I lost my mother to breast cancer in 1988 and for whatever reason, I knew that I would battle the same disease in my lifetime too. I just didn’t expect the battle to begin quite so soon.

I relocated to Baltimore County in September 2000 to accept a position with Visa International. On the average of once a month I would travel to Europe or Asia or Canada, Miami or San Francisco. I’ve always had a bit of wanderlust; how much better could it get! I had just taken possession of my dream home in May 2001. For the first time in 20 years, I was living within 125 miles of my immediate family. Finally, I was mastering the art of balancing my career goals and my personal life. Life was great!

Because of my family history, I’d kept up with the latest research. I knew that early detection was critical and I had formulated a treatment strategy should I ever be diagnosed. If, and when, I was diagnosed, I would approach this as I did the typical challenges in my professional life: understand the problem and develop a plan that would achieve the desired results.

First and foremost, I would seek out an institution that valued its patients and looked upon them as partners in their care. It was important that the competence of the staff at all levels be balanced by their compassion. I thought it important that the institution offer a multi-disciplined approach with emphasis on the current treatment options as well as clinical trials that were offering promising results. If need be, I was willing to be inconvenienced and travel great distances in rush hour traffic. All I hoped is that such a place existed.

When I discovered the lump, I wasted no time in trying to locate a surgeon to perform the much needed biopsy. The best place to start, or so I thought, was with a primary care physician. The earliest I could get an appointment with my new primary care physician was July. I attempted to impress upon the scheduler the need for something sooner, but you know how it is. . . “He only sees new patients on Wednesdays. . .the next available opening is in July. . . I’d be happy to add you to waiting list in the event of a cancellation.”

Using my limited contacts, I managed to get an appointment with a surgeon at a suburban hospital the following week. No need to pull out all the stops until the biopsy results were in. A few days later, he confirmed my worst fears. It was time to execute my treatment strategy!

By coincidence, one of my staff was a personal friend of Dick Adams who, as many of you know, has a very strong affiliation with the University of Maryland Marlene and Stewart Greenebaum Cancer Center. Within the hour, I had a call from Dr. Barry Meisenberg, professor of Medicine and head of the Division of Hematology/Oncology at UMGCC. “We can see you tomorrow,” he said, “Will that work for you? I’ll have someone from the Breast Clinic call you to work out the details. You should be prepared to spend the entire day.”

At that time, the Breast Clinic was located in 419 Redwood Building. As I approached the door, I must admit, I was not impressed with the poster board sign, or the fact that everything seemed “temporary.” Well, it didn’t take long for my concern to evaporate. Starting with the calming influence of Karen Ulick at the reception desk, Rose Muffoletto’s personable approach, and the efficiency that allowed me to be seen by a surgeon, an oncologist, a radiation oncologist, a Plastics and Reconstructive surgeon and, when I mentioned I was experiencing some mid-cycle discomfort, I was off to the 5th floor to be seen by a gynecologist. The best part of that entire day was that I only had to dress and undress twice! More importantly, the gowns were generous enough to protect my dignity too!

If first impressions were any indication of what was to come, I knew I was in the best place possible to confront my disease. I didn’t need to worry about the paperwork, or the process or any of the other distractions that can add unnecessary stress. I found the team that was willing to be my partner! My focus was to stay strong physically and mentally. The UMGCC team’s focus was to formulate the treatment plan that would offer me the greatest chance of survival.

During the first year of my diagnosis, I visited the infusion unit 36 times, 32 of which were weekly visits, for a total of 160 hours of chemotherapy. I was a Friday morning regular! As debilitating as the chemotherapy was at times, the staff made it tolerable. Nancy Tate and her sidekick Kathy would conveniently appear to keep me company. The Infusion Unit team was incredible. They were never too busy to smile. They seemed to remember the little things about their patients.

They would warm my epogen vial in their pockets so the injection wouldn’t sting as much. They remembered that I would chew a starburst candy to mask the taste of the heparin when they were flushing my port. They mourned with me the loss of my chemo buddies Theresa and Monica. And, when I had a panic attack the morning of my first Taxol treatment, the nurses calmed me down, the infusion took place and I went home to await the 6 p.m. bout of nausea that was typical of my treatment to date.

A funny thing happened: the nausea never came! When I woke up on Saturday morning, I couldn’t believe my good fortune. I showered, dressed and was out the door by 9:30 a.m. I needed to treat myself! But more about that shortly.

Dr. Meisenberg and his team willingly worked around my travel schedule. I accumulated 100,000 frequent flyer miles that year! When I had my setbacks, and there were several, I never doubted that an alternate option would be available. About the only thing that I have yet to experience is the “Don’t worry, the weight gain is temporary! Once you stop taking the steroids, the weight will come right off!”

Quite frankly, the most difficult part of the treatment was getting to the Infusion Unit. The trek from the parking garage to the hospital lobby, waiting for the elevators to take you to the 9th floor, walking from the waiting room to the registration area, to the “lab” for vital signs and blood work, to the examine rooms, then off to the elevators again for the ride to the 13th floor was exhausting. If you have never experienced this ordeal, I encourage you to do so. I know that the Stolers (Roslyn and Leonard Stoler) have. It will reinforce why the Stoler Pavilion is so critically important to the overall treatment approach.

I tell everyone I meet: The University of Maryland Marlene and Stewart Greenebaum Cancer Center saved my life! It is truly “Where Hope Begins.” It did for me! I know first hand that it’s not an empty promise. It is an unwavering commitment. Patients are treated with respect and made to believe that they are the only one that’s important!

To the Greenebaums, please accept my personal thanks for your generosity. Without your support and vision, I doubt I would be here today to share my story.

To the entire UMGCC team, thank you for your unwavering commitment to seek and retain the most competent staff at every level, and to be on the leading edge of research, offering all who seek your care the most comprehensive treatment options available. Please continue to balance your competence with your compassion! When you are fighting for your life, it is critically important to know that you matter!

And to the Stolers, to know that all who will come here, and all the physicians, nurses, technicians and staff who will treat them, will benefit from the patient-friendly environment must be very satisfying. Personally, it is gratifying to know that the FAIRWAY TO LIFE Breast Center will be an integral part of this facility. No more temporary space with the cardboard sign!

Just one more thing. Remember that beautiful Saturday morning, when I was out and about by 9:30 a.m. determined to treat myself? Guess what I did? I walked into Len Stoler Lexus on Reisterstown Road at 10 am, and by noon I had inked the deal! I recall that at the time there was a moment, as I was signing the 48-month lease agreement, when I wondered if I would live long enough to make the final payment. The lease is about to expire! Little did I know at the time that I would have the opportunity to let Mr. and Mrs. Stoler know how that Lexus is a testament to my survival!

On behalf of all who have come before, all who are in treatment currently, those newly diagnosed or those who will come at a future date, thank you all, from the bottom of our hearts!