Monday, October 16, 2017

When The Exorcist Hits Home

a B&W photo from The Exorcist the television series shows a femme with her knees bent and arms extended over her knees, but her head is on backwards; under the photo is a grey background with black text "When The Exorcist Hits Home" with a black line under it and more black text "Not Standing Still's Disease"

Content note: discussions of abuse

I have always enjoyed media around scary things. Scary things tend to help my PTSD, but there's something more to it. It's something I've been trying to figure out how to word, but just couldn't ever fully construct the thought.

When I heard they were making a TV series about The Exorcist, I was way too excited. Season one was set around Regan, originally played by Linda Blair in the 1973 movie. You follow her story as an adult, played by Gina Davis. She has a husband and children but changed her name to avoid her mother as well as her history. Through the season, it comes out the Angela (her assumed name) is actually Regan and that's why negative things continually happen to her family. She takes on the demon who has possessed her daughter and all kinds of stuff happens. I won't say more in case you're interested in catching up.

Season two just started and it's really good. People were upset that this season wasn't focused around Regan. However, it's focused on the actual exorcists from the first season. They're battling demons, themselves, and a conspiracy within the Catholic Church.

It's all the things I love come together.

We have Playstation Vue and it has a DVR. We love it, especially me - I tend to watch more TV than T does. Regardless, I catch up on shows the next day or a few days later, so I was just watching last night's episode.

Spoilers ahoy!

About halfway through the episode, Marcus and Tomas - the two priests - visit a home where the daughter is supposedly possessed. In order to conduct an exorcism, certain things have to be found in the afflicted person. These include speaking in tongues, knowledge of the future, ridiculous strength, an aversion to holy things, and physical changes. These all have to be present.

Marcus and Tomas are debating whether or not the girl is possessed. They learn from an outsider that the girl has been ill all her life, going in and out of hospitals, but no one can figure out what's going on. This is different than the mother had stated, which then concerns Marcus. After all, why would the mother lie?

Marcus searches the house and finds a box of pills. Medications including hallucinogens are found and he's able to piece together quickly that this girl is being poisoned. The mother, it turns out, has Munchausen Syndrome by Proxy (MSP).

(More on this later.)

Marcus bursts into the girl's bedroom, pushes the mother away, and tells Harper “You are clean. You are pure.” Mrs. Graham, the mother, has been filling Harper's head with lies in addition to the medications. Mrs. G yells at both priests, telling them to leave, but they refuse. As Tomas chases after the mother (and gets a head wound), Marcus comforts Harper:

M: “You’re safe now. Do you understand?”
H: “No, I’m sick.”
M: “No. No, you’re not the sick one. Your mum’s the sick one. You’ve done nothing wrong.
H:“It hurts.”
M: “I know. I know it does, sweetheart. It’s gonna carry on hurting for a long time. You’re gonna look at other kids, other parents, and you’re gonna say 'Why me? Why can’t I have that life instead?' And then… you’ll get better. You’ll come out the other side. You’ll be stronger than you were before. Cause you will know exactly who you are. That’s what survivors do.”

The mom then bursts in.  

M: “Close your eyes and don’t open them, no matter what you hear.”

Marcus' attention constantly shifts back to Harper, comforting her when he can in between this altercation with Mrs. Graham.

The third party mentioned earlier, a social worker, has gotten the cops as she was denied entry to the home. They show up at the perfect time to help put an end to the fight. The next scene occurs in a hospital, where Marcus and Tomas are catching up.

M: "Do this long enough, you think you understand evil in all its forms, every face that it wears. Then something like this comes along. Least with a demon, you know where you stand. There’s a… purity to the design, a logic, a form. But a parent who did that to their own child… makes you wonder what the hell you’re even trying to save.”

End spoilers, begin overanalysis!

Ever since I was young, I've enjoyed things around possession and demons. Despite growing up in abuse, I still felt interested in evil. I never really understood why. I felt like there must be a reason.

As I was watching this episode, Mrs. Graham's action took me by surprise. I did not see this twist coming and was unprepared. My mother was accused of MBPS, which is part of what led to her pulling me out of school and away from healthcare providers.

A few weeks ago, T and I were catching up on one of my favorite podcasts: Wine and Crime. I had decided we should skip the episode where they cover MSP. One night, though, after listening to something else discuss the condition, I couldn't sleep. The wheels in my head were turning, focused on the odd paralells. Instead of being able to sleep, I listened to the skipped episode.

One of the reasons I like Wine and Crime is because they go through the psychology behind a condition or crime. It's done in a way that is tasteful and not full of ableism (usually). I started to understand even more about the need for attention that some people have. Mother meets many of the warning signs - craving attention and being depended upon, wanting others to see her as overly devoted and saintly, boundary issues, exaggeration, etc. 

I've thought of the odd similarities before but thought it couldn't happen because I am sick. Just because someone has some of these tendencies doesn't mean they act on them. It also doesn't mean they don't take opportunities that present themselves, either. She did not have to make me sick, but certainly enjoyed the attention around it for ages.

She begged me to apply for SSDI, despite the fact that I was not even close to bad enough, because I feel that she wanted to tell people about her disabled daughter. She always told me I'd die early, that no one would love me, etc. 

Whether she has MSP or not, the similarities are striking and telling.

Everyone needs a Marcus

I won't lie - I rewatched these scenes three or four times. I cried for a while. I made T watch when he got home, simply because it confirmed a thought I had once about why I like these kinds of shows. I needed someone to witness the feels I was having.

The truth is I could've used a Marcus a long time ago, someone to hold me and tell me that this is going to suck and hurt. Someone to tell me it was going to eventually start feeling less raw, too, would've been amazing. Who knows whether or not I would've believed a Marcus.

Still, I know this phrase would've been beneficial: "Cause you will know exactly who you are. That’s what survivors do." Hell, three years removed from contact with my mother, and this is still heavy (in a good way).

Even more, Marcus' analysis of the situation in the hospital is, for me, spot on. I am strangely comforted by the idea of evil, demons, and possession. It has a routine to it. There are rules to that world that we don't have in humanity, things that even evil won't violate.

I would feel more comfortable, surer of myself against a demon than I do against my own mother - and that's a damn shame.

Tuesday, October 10, 2017

Nortriptyline: Day 40

grey background with striped teal lines at top and bottom; 3 pills - one white and pink, one white and teal, and one white and orange - sit above pink cursive text "Nortriptyline: Day 40" sits above teal text "Not Standing Still's Disease"

I've been on nortriptyline for forty days now.

I am seeing a very slight decrease in my migraines. When I have them upon waking up, I can usually combat them with caffeine. This wasn't necessarily true before, and that's why I sought out treatment anyway.

I've found that if I don't sleep enough, that's when I tend to wake up with a migraine. It's hard for me to go back to sleep or take many naps. That makes catching up on sleep really difficult when I need some more ZZZs. 

I suppose it doesn't make it easy when I'm waking up with high pain up to five times each night, too. My alpha wave intrusions are getting worse. On top of that, since doubling my nortriptyline dose, I'm having terrible nightmares.

It certainly doesn't make me want to sleep enough if I'm waking up completely bawling at a terrible dream involving the piggies or T or my sister. Super realistic nightmares suck.

At the same time, I've picked up from a productivity standpoint. With nortriptyline being a tricyclic antidepressant, my mood has improved and I'm getting shit done. It's nice to feel like I can do things again.

Still, I don't know that having nightmares and increased nausea versus slightly more tolerable migraines is acceptable for the long-term. Maybe there's a better medication out there for me?

This is one point where I'm struggling with being an empowered patient. Perhaps it's because I had to beg to get even this medication from a paternalistic old man. Maybe it's because I've read too much about psychosis and fear withdrawal from this med. Regardless of the cause, this helps my depression but not really my migraines as much as I think something else could.

Since I'm going to ACR this year, I'm also less inclined to ask about switching medications right now. Perhaps this is something to bring up at my December 1st neurology appointment instead.

Wednesday, October 4, 2017

Matt Across America

photo of a road in the desert and Matt Iseman (with an exaggerated large head) stands wearing a suit in the left corner; the Joint Decisions logo is at top middle; a road sign has "October 4" on it with a stamp to its right featuring the FB Live symbol; at bottom is a green text box with white text and logos "Go to [FB Logo] @JointDecisionsRA" and below "[FB like symbol] to be notified when Matt goes live!"

If you've been paying attention to the Joint Decisions Facebook page this morning, you already know that there's something exciting going on! If you missed it, though, head over and check out all the lives videos with Matt Iseman being posted today on Facebook and Instagram.

In case you missed it: Janssen Biotech, Inc. and Joint Decisions are launching Matt Across America – a photo contest to raise awareness and help people understand what infusion therapy for RA is like.

Over the next few months, cardboard versions of the amazing Matt Iseman will be traveling to infusion offices across America, and we’re encouraging people with RA to share photos of their infusion day (by taking a selfie with Matt's cardboard likeness) to help patients connect with one another and see what getting an IV can really look like.

It can be scary. Before Matt started infusion therapy to treat his RA, he wasn’t sure what to expect - and he's a doctor

If you're lucky enough to snag a cardboard cut-out, here's what you do:
1. Post the selfie to Facebook and/or Instagram
2. Using #MattMeAndIV and #Contest
3. Tag @JointDecisionsRA to enter

At the end of the campaign, the lucky winner will get a meet-and-greet with Matt Iseman!

It's days like these I actually am sad that I do a shot at home for my treatment.

Matt will be LIVE throughout the day today on Joint Decisions' Facebook and Instagram pages, talking about his experience with RA. You can also learn more, print a “Matt” in case he’s not traveling to your infusion center, and see photos throughout his journey across America on the JD FB page.

Tuesday, October 3, 2017

Stop Blaming Mental Illness for Violence

kirsten with purple short hair looks sad but you only see her left eye and side of her face; a purple text box with white text: "Stop Blaming Mental Illness for Violence" and "Not Standing Still's Disease"

This post is based a bit on a Twitter rant I went on this morning. (BTW stats I'm citing can be found at NAMI, NIAMH, CDC, and SAMHSA - a post will go up on Chronic Sex tomorrow with more info.)

It's Mental Illness Awareness Week. Instead of breaking down stigmas, many of us are having to avoid media spouting ableist rhetoric. Hell, even Jimmy Kimmel's monologue from last night that's gotten so much praise is full of ableism.

Did you not recognize the ableism in that speech, or do you not care?

Parts of Kimmel's monologue last night were good. However, his rant against the lifting of an ableist bill was troubling. Why? Those of us who are mentally ill are far more likely to be killed than to kill. We are up to four times as likely to be the victim of a violent crime than to be a perpetrator of one.

As someone who is mentally ill, I am tired of people falling back on mental illness as the cause of all violence. This is especially true this week.

26% of American adults have a mental illness, and 25% of those are 'serious' - including me and my PTSD-riddled noggin. Around 70% of adults with mental illness also have a non-mental chronic illness. Living with both lead to a 4x chance that you'll die early.

Those of us within the queer or LGBTQQIA2+ community? Over twice as likely to struggle with mental health. About the same can be said for those of us with physical health issues. Mental illness race breakdown in adults:
  • 20% - white & black
  • 16% - Latinx
  • 14% - Asian
  • Nearly 30% - Native Americans & Alaskan natives

Society wants to blame us mentally ill for bullshit. They refuse to address the roles that Adverse Childhood Experiences (ACEs) or socioeconomic contributions to mental illness. They want to blame our brains for fucking up their world but refuse to address or acknowledge marginalizations that contribute to mental illnesses. 

Marginalizations lead to huge barriers in getting mental health care, including even a diagnosis (let alone treatment), Discrimination (racism, homomisia, etc), access, insurance, poverty, transportation, stigma, & language barriers all contribute to a lack of treatment.

Statistically then, those of us with a ton of marginalizations should be the ones committing violent crimes - but we're not. 95% of violence in the US isn't linked directly to mental illness. Mental health is only brought up when the offender is a white male. Otherwise, racism and Islammisia come into play. 

People need to recognize that some people just fucking suck, regardless of mental health state. As Michael Caine's Alfred said about The Joker, "Some men just want to watch the world burn." Let's take that further, too - either they want to watch the world burn or they give no fucks about anyone else but themselves. Last I checked, being a selfish asshole was not a mental illness. 

Awful human beings exist, regardless of their mental or physical health state. Being a bigot and wanting to murder people isn't a mental illness issue as much as it's a societal issue.

My mental illnesses don't make me awful any more than having short hair does.

This is supposed to be the one week where we can speak openly about stigmas we face as mentally ill people. Instead, we get to fight ableism from all sides. It's ridiculous and harmful.

Stop with the ableism and harming our communities because you don't grasp humanity's failings. All you're doing is contributing to the stigmas we're trying to fight, making it harder for us to live full lives. You're perpetuating violence against us as you promote ableist ideas.

Please just stop.

Friday, September 29, 2017

Some Hobbies Are Better Than Others #RABlogWeek

4 pics, left-right, top-bottom; 1) blue background with white text "Some Hobbies Are Better Than Others"; 2) a dark wine bottle on a wooden table; 3) three paintbrushes against an orange-pink watercolor background; 4) blue background with white text: "#RABLOGWEEK" and "Not Standing Still's Disease"

It's RA Blog Week! Since I wanted to get the word out about CHIP funding issues, I'm writing about yesterday's prompt today: Hobbies – Hobbies are healthy or maybe they are not? What is your hobby and how does it help you with your autoimmune conditions? 

One of the things I do regularly is go to Target. It's not a glamorous hobby, but it's something that keeps me moving. Whether I'm stopping in to get prescriptions or OTC lidocaine patches, it's an easy way to get some walking in while protecting myself from the ridiculous weather we've had lately.

I usually go at least once a week. Sometimes I find fun things, especially now that it's Halloween season.

selfie of me and T, only he has on a brown horse head and I have on a white unicorn head with rainbow hair and a golden horn; white text at middle bottom: "[screaming internally]"

I taught myself to play the uke. It was something I wanted to get into because I knew a bit about the guitar, but a guitar was big enough that it was hard to play. Playing songs from Nirvana, Beyonce, Carly Rae Jepsen, Rihanna, and more contemporary artists is something I enjoy. Some songs sound great and others... not so much.

me playing the ukulele; my ukulele is light blue and I am wearing jean shorts, a tank top, a jean jacket, and a hat; in front of me is a music stand and I am sitting in front of an apartment complex

The only real difficulty I've encountered is that there are some chords I just can't play. They require weird contortions of my fingers that I just can't do. I try to work around it, skipping those chords or using another nearby one.

The uke has been gathering a lot of dust. I keep telling myself that I need to get back into it. That said, I've been dealing with enough health stuff and work that I just haven't gotten back to it yet.

Playing with the piggies, though, is something I always try to do.

4 photos from left-right, top-bottom; 1) Gus Gus - black guinea pig with white nose stripe - is laying on my chest and I am laying on my bed; my grey shirt, blue pillow, and brown headboard are visible; I'm making a duck lip face and he just looks adorably into the camera; 2) picture of Jaq - brown and white guinea pig - in his house; he has My Little Pony fleece, a dinosaur for snuggling, a pigloo, and various toys/snacks within view; he's looking at the camera; 3) Gus Gus leaning on his food bowl and looking at the camera; 4) an up-close photo - like, can't even see his nose - of Jaq; he is on my torso, which is clad in a burgundy shirt, and you can also see my legs; we are under a quilt that is grey, yellow, and white

I know spending time with essentially my children shouldn't be a hobby, but ya know. Growing up in an abusive home means that I know you don't always spend time with people you should, right? Even when I can barely move, I try to hold them or get on the floor and play with them. They help me so much.

Taking care of them really helps me. It gets me up and moving, regardless of what time of day it is. I have to make sure that they're cared for, happy, and clean. They're very snuggly, too, which helps me rest throughout the day.

It was actually a big deal last week when I had rash all over. I couldn't hold the boys for very long because my rash is so painful and itchy. As soon as the rash had dissipated, Gussy kept begging for snuggles throughout the day.

It was very similar to how they react once I return from a trip.

Oddly enough, other patients have chided me for this - for playing on the floor. We all do things that may not be the absolute best for our joints, especially when it involves other beings we love. For me, playing on the floor with the piggies is a way that I stay myself and tell my arthritis to eff off.

I guess that's why I see it as partially a hobby - it's something that helps me to normalize my life. We all need those things, whether it's walking around Target with a pumpkin spice latte, playing music, or spending time with loved ones.

Thursday, September 28, 2017

CHIP Needs Our Help

photo of a stethoscope with a heart on it against a white background; black text "CHIP Needs Our Help" and "Not Standing Still's Disease" at middle-top and middle-bottom respectively

The Children's Health Insurance Program (CHIP) was passed in August 1997, taking effect the next month. What this program does is give states funds (that they must match) that help to cover children living in low-income households that don't qualify for Medicaid. It's undergone expansion, adding protection for a couple million more children thanks to President Obama.

Today, CHIP covers approximately 9 million children from low-income families. These children are at risk of losing their healthcare. See, funding for CHIP ends at the end of this month - so, Saturday. The Senate has refused to discuss renewing funding for CHIP since early this year, focusing on repeal-and-replace efforts instead. Without immediate renewal, over a million of these children would lose insurance and the remaining 8 million would see reduced benefits.

The Senate Finance Committee, led by Ron Wyden and Orrin Hatch, have introduced a bill - S 1827 - that extends funding for another five years. However, the Senate has failed to act on this.

Do what you can today to reach out to your Senators and ask them to discuss this bill NOW.
  • Contact your Senators
  • Protest and picket (if able)
  • Get loud on social media
    • Use tags like #saveCHIP 
  • Send letters to the editors or reach out to your local news to explain your concerns

Let's come together to ensure that these children aren't left behind.

Wednesday, September 27, 2017

Two is Better Than One #RABlogWeek

4 panel pic with an orange circle over where the corners meet with white text "two is better than one" - left-right, top-bottom: 1) pic of K and T on their wedding day dancing while K laughs; 2) blue background with white text "#RABlogWeek" 3) blue background with white text "Not Standing Still's Disease"; 4) first K+T kissing pic

It's RA Blog Week! Today's prompt is: Partners – Where would we be without our partners? They are often not just partners but caregivers. Tell your partners' story.

This is a tricky post for me for some reason. I can't quite grasp why. I mean, I'm always straightforward about how being sick can complicate relationships. Hell, I'm a sex educator. This shouldn't be so hard!

I think part of it is that relationships are not only about love but about how we interact with each other around hard things. While I appreciate T handling my poor communication around pain or me hiding my pain, I try to not fawn over him. There's ableism in over-appreciating our partners, as though we accept the outward notion that we aren't fit for relationships.

T is a patient, too. As comfortable as I feel talking about my illnesses, I don't know that it's fair to talk about other people's without really consulting them.

And T doesn't always (read: ever) like to talk about himself.

Even after being together for ten years (as of last week - go us!), we're still figuring out how to handle each other's health. I'm sure part of it is that our illnesses are incredibly unpredictable. I mean, I don't know what my 16+ diagnoses will do from day to day and struggle with that. Why wouldn't T?

Sometimes we both have to put aside our patient needs to help each other. It's not easy, especially for T. Depression and anxiety aren't things we can place aside as easily as, say, some of my physical issues. That said, sometimes my physical needs are more immediate - like the time I fell, broke two toes, and had to get stitches in my foot. Poor T was asleep and I said I needed him from the bathroom, while I was trying to contain the bleeding on the bathroom floor.

I like to think that dealing with our health crud together, though, makes us stronger.

We always have another person to talk to who will understand (or at least try to) and give emotional support.

There's always someone to go with you to urgent care.

When one of us is struggling, the other can make a boatload of mac n cheese or cake. 

Most of all, even when we can't help each other, we can hold each other and cry. As someone who grew up crying alone while hiding in closets or under beds, having someone to hold me while I cry is something I've never really had before.

Personalizing my arthritis as Arthur has really helped me realize the value in T and I viewing ourselves as a partnership fighting health crud. It becomes a lot less likely to wrongly find blame in each other over something not getting done if we see Arthur as the villain.

Tuesday, September 26, 2017

Kirsten's Tips and Tricks #RABlogWeek

colorful tiled background with white text: "Kirsten's Tips and Tricks" - black text on a white rectangle: "#RABlogWeek" - white line - white text: "Not Standing Still's Disease"

It's RA Blog Week! Today's prompt: Tips and tricks – What are the ways you have learned to work around the physical difficulties and limitations of your autoimmune condition?

These are tips and tricks that I use to get through life with a laundry list of diagnoses. I think we're up to 16 now? Oy. That said, they may not fit for every person, every situation, or every location. You should always check in with your provider(s) before making any big changes.

First and foremost, it's important to establish care with providers who listen to you, learn about your illness(es), and do some of your own research. You can learn more about my health care mistakes here.

I've gotten to test many helper items through the Chronic Illness Bloggers network:

From a practical standpoint, it's important to be real with yourself about what you are or aren't capable of at the moment. As I write this, I want to be cleaning and doing laundry or dishes - but I'm flaring and I know this will cause more pain right now. I can pick one of those things, maybe, but certainly not all of them. That's hard to admit, even to myself, but important to recognize. If I pushed myself too hard, I would be paying for it for days.

Find small things you can do to make your spaces, hobbies, and tasks more accessible. Look into getting a supportive floor mat for cooking and consider getting a stool if you make a lot of pasta like I do. Consider getting a shower chair and/or one of those shower heads that can also become a handle. It really helps on those days when showers get difficult.

Meditation using the Buddhify app has been incredibly helpful. They have tracks specific to stress, illness, and chronic pain. It's a great way to remind ourselves that our pain isn't always as big as the story we tell about it - including concerns about if/when it will end, etc - makes it feel.

I've also learned, after years of doing the opposite, that I absolutely must allow myself to feel feelings. If I don't, it comes back to haunt me physically. My body does not cope well with stress at all. I do this in two ways. First, I allow myself to be a grumpy butt. This means I might subtweet on social media or respond more upset to something than I might've before. And that's okay.

Tea and Empathy cards - unheard, frustrated, hurt, discouraged, relief, sh*tty, validated, resilient, vulnerable

Secondly, I really love using my pal Kate McCombs' Tea and Empathy cards to map out my feels. Sometimes T and I use them together to talk about how we're feeling. They can be used with several people or even by yourself. The layout above is a collection of my feelings about how my physical health was as of Saturday night. For example, I was relieved about starting pelvic floor and spine (and neck!) PT. However, I was also feeling pretty shitty because of flaring. These cards are incredibly wonderful - almost as much as Kate!

Speaking of, when I was in Oregon after spending time with Kate in December, I tried marijuana for the first time. I found it to be very effective for my pain and anxiety. I also slept incredibly well! I very much wish that it was legal everywhere, at least medically, because it's a very effective medication. Please make sure that you check on laws in your area before using marijuana.

For my fibromyalgia, I have found engaging in pain play helps. Flogging, specifically, helps to kick my fibro's ass incredibly quickly. Not everyone is interested in or understands kink and/or BDSM, and that's fine. My rheumatologist and I believe that flogging - essentially using a whip with multiple strands on the end - somehow resets my brain's pain processing. It's the only thing that will completely kill my fibromyalgia - very specifically, my allodynia.

Make sure to join me in opposing the Cassidy-Graham plan this week. Click here to learn more.

Monday, September 25, 2017

My Mental Health Goes to Shit Sometimes #RABlogWeek2017

wooden background tinted darkly with white text: #RABlogWeek2017 - My Mental Health Goes to Shit Sometimes - Not Standing Still's Disease

It's RA Blog Week! Today's prompt is: Mental Health – How do you manage to maintain your mental health while dealing with autoimmune disease? Discuss how dealing with RA every day makes you emotional. Do you hide your emotions?

I've talked a lot about how my mental health is impacted by being chronically ill. It's a process that we all go through as patients.

It's one of the most difficult struggles we face.

My biggest struggle with mental health is completely linked with my physical health. I wind up pushing through and not asking for help I need. Obviously, part of that is being an abuse survivor, but a lot of it is because I'm incredibly independent (read: stubborn). I've always wanted to take care of things on my own because that was my childhood. When I cannot do things on my own, I usually just struggle through as best as I can or forgo whatever activity. 

I get angry and shut down emotionally instead of communicating my frustrations. I know that sometimes, it's because sharing how angry I am with my body will lead to crying - something I absolutely hate to do... mostly because of how I was raised.

Crying was showing weakness. It meant I wasn't being strong or resilient or persevering. I know now that this is bullshit, but it's a hard thing to change.

selfie of me with short hair; in the background are posters of the skeletal system and muscular system; I look tired/annoyed/run down and am wearing a hospital gown, though you only see a snippet of it on my right shoulder; there is a filter on this photo that makes it look distressed and discolored

The unpredictability of living with chronic illnesses is detrimental to my mental health as well. I can't plan effectively when I don't know how my body will react.

I was just in New York for a trip. I had tons of fun and spent time with some of my favorite rheummates. Even though I've started to buffer my trips to give myself time to recover, that doesn't always do the trick. Sometimes I only need a day and other times I need a week - and there's no real way to predict that, even when I get home.

It's hard to know if I will be up for appointments like physical therapy, let alone to clean the guinea pigs' house.

That's really hard, especially being a planner.

It's taken me nearly thirty years, but I'm starting to learn how to communicate my pain more effectively and ask for help. I'm sure it'll be a continuous process until the day I die. Hell, what person is good at this without illness?

Make sure to join me in opposing the Cassidy-Graham plan this week. Click here to learn more.

Friday, September 22, 2017

Guess Who's Back? (rash is back)

on left, picture of Kirsten with purple cloth across chest and rash on face, chest, arm; on right, a reddish text box with white text "Guess Who's Back (rash is back) Not Standing Still's Disease"

Yesterday was one of the roughest rheumatic days I've had in a really long time.

I woke up in extreme pain, with my hip feeling as though I had bursitis again. My knees and ankles were horrendously achy. It was so bad that I set up a ton of pillows, broke out the ice packs, and turned on my Oska Pulse.

All day, I was just in a lot of pain. It wasn't until T came home that it got even worse - the rash hit full force.

Because I struggle with temperature regulation issues, I often get warm randomly. This was different, though. I knew there was rash. Listen, this damn rash is something I remember dealing with all my life. Sometimes I wrongly assume that I have it, but that's pretty rare. It's obvious to me when it appears. It hasn't really popped up recently, though, because my disease has been well-controlled.

I got up and went to the bathroom, nearly crying when I saw just how bad my rash was.

It switched sides throughout the night, moving from my left to my right over about an hour. Soon, it was on my legs, too. Sleeping was hard, though not nearly as hard as when I was a child. I remember barely sleeping, tossing and turning in pain. This time, I just couldn't get to sleep and then I was out quickly for a few hours at a time.

Not everyone's rash itches or is uncomfortable. If I recall correctly, I think it's under 10% (5% maybe?) who do have that... and I'm one. Hooray?

I'm hoping that this is all due to the quickly-changing weather we've been having. We had a horrid storm run through the night before with temps still near 100 at night. As much as I want to, though, I can't exactly rule out that this isn't from upping my nortriptyline, either. I hope that it isn't, but only time will tell.

Thursday, September 21, 2017

Nortriptyline Day 21

darkened photo of syringe, a pink pill, a white capsule, and two orange and white capsules - under, a yellow label with black text: "Nortriptyline Day 21" - under is a white space with black text "Not Standing Still's Disease"

I called my neurologist's office the other day to update them on how the nortiptyline was working.

After waiting five hours for a call back, I explained that this was helping a bit but not as much as I'd like. I also brought up nausea I've been having with this medication - something that's made the motion sickness I've had for a few years even worse.

I threw up several times the other day in a car. I've learned I really can't sit in the backseat right now.

We decided to double my dose and see what happens. If the nausea gets to be too much, we'll look at a new medication.

I have been able to be more productive lately, which is nice. I still am waking up with migraines, but they dissipate throughout the day - not always, obviously, but usually. I'm having to rely less on my Axon Optics. I love them but it is nice to not always have to have them on.

We'll see how 20 mg of nortiptyline works.

Tuesday, September 19, 2017

911! Fight Against the Cassidy-Graham Plan

white background with red vertical lines on either side; black text "911!" and red text "Fight Against the Cassidy-Graham Plan" and black text "#savetheACA #ACAsavedmylife Not Standing Still's Disease"

Update: public comments are due by 9 AM Eastern Time Monday morning (25th). You can email your comments to or visit's email assist

Not only do we have to fight to protect the ADA, we still have to fight for healthcare. 

I'm starting to worry that this is going to be every fucking quarter, but I digress.

You can read the 141-paged plan (referred to as Cassidy-Graham, Graham-Cassidy, Graham-Cassidy-Heller, and Graham-Cassidy-Heller-Johnson) but here's the scoop on what this bill would do:
  • Eliminates subsidies for private insurance
  • Ends Medicaid expansion
  • Caps Medicaid money, leaving millions of people uninsured
  • Allows waivers to charge sick/ill/disabled patients more (fucking high-risk pools)
  • Stops requirements on ACA-required benefits
  • Repeals tax credits for middle class
  • Puts up barriers to health insurance for low income people (and removes subsidies)

Cassidy and others have said this block grant program would simply give money to the states for them to decide. It's essentially shifting ACA-type stuff to states rights type stuff, acting as though states could then keep ACA programs in place. Without the support at the federal level - and with a large number of anti-ACA governors - this won't be the case.

One scary thing to note is that the Congressional Budget Office won't have enough time to evaluate the bill before September 30th. This is the last day this bill could be passed with 50 votes (or 51 with VPence). Otherwise, filibuster could prevent the bill from being passed.

Graham-Cassidy-Heller (ACA Repeal) Simple Summary - Repeal and Replace is back. Take it seriously. Here's what it does: *Estimated 32 million will lose coverage within 10 years (not yet scored) *Ends Medicaid expansion. Health care for 11 million low-income adults. *Ends all subsidies for the exchange, replaced by a smaller and declining "block grant" *Block grant doesn't have to be spent on same population *Cuts coverage for low income seniors, children and people w disabilities by 7% by 2026 with a "per capita cap" (Yes, that's right -- a block grant AND a Lee capita cap) *Ends Federal protections on pre-existing conditions, life time caps and essential benefits. 50% of states expected to do so. *Ends all cost sharing payments to low income Americans *Ends all funding for coverage by 2026; 100% afterwards *Averages would be dramatically different: 20 states estimated to lose 35-60% of funding to move money to rural, red states *CBO has not estimated impact on premiums, but likely 20% spike next year *Would likely be presented to the House as "take it or leave it" if passes Senate *Provide no funding for recessions, natural disasters, public health emergencies, or price spikes *Targets women's health/family planning *Uses the same "50 votes" only partisan technique to pass; upends all bipartisan progress of the last two weeks - Source: Centers for Budget and Policy, prior estimates
Source: Andy Slavitt's Twitter; see alt-text for description
This is a more radical version of repeal and replace efforts so far.

I'm tired of fighting, so I'm sure you are, too. If we don't fight this one, though, we lose any progress we've made up to now.

What to do now:

  • Contact your Senators (especially if you live in South Carolina, Louisiana, Nevada, or Wisconsin)
  • Protest and picket (if able)
  • Get loud on social media
  • Send letters to the editors or reach out to your local news to explain your concerns

Some organizations opposed to this bill:

  • AARP
  • Adult Congenital Heart Association
  • ALS Association
  • Alzheimer's Association
  • America’s Essential Hospitals
  • America's Health Insurance Plans
  • American Academy of Family Physicians
  • American Academy of Pediatrics
  • American Cancer Society Action Network
  • American College of Physicians
  • American Congress of Obstetricians and Gynecologists (ACOG)
  • American Diabetes Association
  • American Foundation for the Blind
  • American Heart Association
  • American Hospital Association
  • American Lung Association
  • American Medical Association
  • American Nurses Association
  • American Osteopathic Association
  • American Psychiatric Association
  • American Psychological Association
  • American Speech-Language-Hearing Association
  • Amputee Coalition
  • Arthritis Foundation
  • Association of American Medical Colleges
  • Autistic Self-Advocacy Network
  • Blue Cross Blue Shield Association
  • Center for Medicare Advocacy
  • Children's Hospital Association
  • COPD Foundation
  • Cystic Fibrosis Foundation
  • Family Voices
  • Federation of American Hospitals
  • Infectious Diseases Society of America
  • JDRF
  • Los Angeles LGBT Center
  • Lutheran Services America
  • March of Dimes
  • Nationa Association of Medicaid Directors
  • National Health Council
  • National Institute for Reproductive Health
  • National Multiple Sclerosis Society
  • National Organization for Rare Diseases
  • Planned Parenthood
  • Public Health Institute
  • Robert Wood Johnson Foundation
  • Volunteers of America
  • WomenHeart

Further reading:

Updated Sept 24

Monday, September 18, 2017

Double-Duty PT Starts Next Week

selfie of me in the car with sunglasses on, making a duck lips face; I'm wearing a grey sheer v neck tee with a black strappy bra underneath that is showing outside the v; to the right is a brownish blackish box with white text "Double-Duty PT Starts Next Week" and a white text box with black text "Not Standing Still's Disease"

I had my first spine PT appointment today. 

My spine PT is great. She recognized my autonomy as an engaged patient and even recommended a textbook on pain to me. It has newer research in it, so I'm on the hunt. Most of all, I appreciated that she's funny, too. We talked about high Adverse Childhood Experience (ACE) scores, the increased prevalence of fibromyalgia in abuse survivors, and safe vacuuming tips.

She even recommended basically a textbook on pain for me. I'm pretty excited to hunt for an affordable copy.

Physical therapy kicked my ass, even though it was just the evaluation. We even got my pelvic floor PT, which was scheduled to start next week in a different health system, switched to this system and location. 

Scheduling these sessions back to back may kill me, but we shall see. I'll probably have to write off Mondays as self-care days for the next few weeks/months.

I looked cute today at least!

Friday, September 15, 2017

Financial Resources for Chronically Fabulous College Attendees

background is a tinted photo with a white/silver mac keyboard, a white cup of coffee with cream, and a light wooden table; over this is white text "Financial Resources for Chronically Fabulous College Attendees" and "Not Standing Still's Disease"

Are you a current high school student starting to look at college next year, but wondering how to financially pull it off while living with health crud? Do you know one?

Here's a great collection of financial resources for chronically fabulous students looking at or attending college.


Of course, FastWeb is one of the largest sites talking about college funding. Visit their page around illness and disability scholarships.

The College Grants Database has a large selection of grants and scholarships for disabled students. They even have some for graduate school.

Iowa Compass: Center for Disabilities and Development has a comprehensive list of scholarships for both general disability/illness and specific conditions.

Of all places, Needy Meds has a large list of scholarships for various college and graduate levels.

Gabriel's Foundation of Hope gives out several $500 scholarships each year.

The Patient Advocate Foundation has a scholarship for students who are patients or have patients in their family.


If you live with a mental illness, make sure to check out these 25 Great College Scholarships for Students Living with Mental Illness.

Have an inflammatory disease like Still's Disease or Colitis? Check out the Abbvie Immunology Scholarship. They give away 45 scholarships each year of $15,000. (I wish I had this in college!)

You can snag a $500 scholarship from Lupus Inspiration Foundation for Excellence (L.I.F.E.) if you have lupus.

The Michael Yasick ADHD Scholarship is awarded each year to undergraduate students living with ADHD.

If you have ADHD or a learning disability, make sure to check out the scholarships available from the National Center for Learning Disabilities.

Do you have diabetes? Check out the Diabetes Scholars Foundation's college scholarship.

If you currently have cancer or have survived it, you should definitely check out the scholarship from the Cancer Survivors' Fund.

Cancer for College has a number of scholarships for cancer patients and survivors.

Regardless of if you're a cancer patient/survivor or have lost a parent to cancer, the National Collegiate Cancer Foundation has a scholarship for you.

The National Children's Cancer Society has an Ambassador Scholarship Program which gives 40 scholarships of $3500 each out.

The Michael A. Hunter Memorial Scholarship is offered to patients who live with leukemia/lymphoma or have a parent who does.

Legally blind? Make sure to visit the Lighthouse Guild to learn more about their $10,000 scholarships.

The Elaine Chapin Fund gives out scholarships to students affected by Multiple Sclerosis (MS), either personally or in their family.

The National MS Society has scholarships for first-time college students affected by MS, whether it affects the student themselves or a family member.

The PDSA (Platelet Disorder Support Association), which focuses on people with ITP, gives out $1500 scholarships in addition to free passes to their yearly conference.

You can find a list of scholarships for bleeding disorders at the National Hemophilia Foundation's site.

Have a Primary Immune Deficiency Disease? Check out this scholarship from the Immune Deficiency Foundation.

Shire offers two scholarships - one for ADHD patients ($2000 and coaching) and another for rare disease patients ($5000).

Have alopecia? Check out the "This Is Me" scholarship.

The Aplastic Anemia and MDS International Foundation offers a couple of scholarships.


If you live in Washington or Oregon, visit Incight to learn more about their scholarship.

Live in or around Washington DC? Project Ascend is a non-profit that provides community support and scholarships for students that are marginalized, disadvantaged, and disabled.

If you have lupus and live in Florida, check out the Michael Jon Barlin Scholarship.

Have T1D and live in Ohio? Check out the Thomas J. Seefred Trust Scholarship.

The Diabetes Hope Foundation provides scholarships for Canadian students.


Make sure to apply for as many scholarships as you're able to.

Always check with your intended college(s) on what funding opportunities they may have as well as what requirements you must meet to receive and maintain funding.

Talk to your campus' disability representatives as well on what accommodations they'll be able to provide for you. Don't forget that this might include housing, meal plans, moving courses to more accessible/centralized buildings, and more.

Check with your guidance counselor at school as well as on sites like FastWeb for scholarships in your community.

If you need to write an essay for an application, ask others to look at it and review/edit. (You can always reach out to me as well!)

Good luck!!