2017 - Page 2 of 7 - Not Standing Stills Disease

Matt Across America

Posted on October 4, 2017December 5, 2021 by Grayson

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.

Stop Blaming Mental Illness for Violence

Posted on October 3, 2017December 5, 2021 by Grayson

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.

Some Hobbies Are Better Than Others #RABlogWeek

Posted on September 29, 2017December 5, 2021 by Grayson

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.

CHIP Needs Our Help

Posted on September 28, 2017December 5, 2021 by Grayson

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
- Call them at 844-859-3118
- Use ResistBot
- Talk to them on social media
- Email
- Fax
  - While you’re at it, tell them it’s unfair and illegal to strip the ACA’s funding and consider writing to your House reps on HR 620 and HR 36
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.

Two is Better Than One #RABlogWeek

Posted on September 27, 2017December 5, 2021 by Grayson

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.

My Tips and Tricks #RABlogWeek

Posted on September 26, 2017December 5, 2021 by Grayson

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:

Liberty Lotion CBD Tincture – helps with pain, inflammation, anxiety, and sleeping
Oska Pulse – helps with long-term pain and inflammation
Axon Optics – help with migraines and technology use
TechCare Pro TENS Unit – helps immensely with my chronic neck and shoulder pain as well as muscle pain
CBD lotions – from sunburns to anxiety to injuries and pain, CBD oil in lotions can be incredibly helpful for a variety of conditions

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.

My Mental Health Goes to Shit Sometimes #RABlogWeek2017

Posted on September 25, 2017December 5, 2021 by Grayson

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.

Guess Who’s Back? (rash is back)

Posted on September 22, 2017December 5, 2021 by Grayson

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.

Nortriptyline Day 21

Posted on September 21, 2017December 5, 2021 by Grayson

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.

911! Fight Against the Cassidy-Graham Plan

Posted on September 19, 2017December 5, 2021 by Grayson

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 GCHcomments@finance.senate.gov or visit willtrumpcarehurtme.com‘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)
- Call them at 844-859-3118
  - Use Indivisible’s call script if you like
- Use ResistBot
- Talk to them on social media
- Email
- Fax
- While you’re at it, tell them it’s unfair and illegal to strip the ACA’s funding
Protest and picket (if able)
Get loud on social media
- Follow Andy Slavitt on Twitter for updates
- Use tags like #savetheACA
Send letters to the editors or reach out to your local news to explain your concerns