On The Passing of John McCain

black background with yellow textbox and black text: On The Passing of John McCain Not Standing Still's Disease

Senator and former POW John McCain died yesterday.

Scroling through social media, I’m dismayed. I keep seeing statements from people who have forgotten McCain was not a man of the people. And, me being me, I’m upset by that. McCain was not a good person, at least politically, and we need to remember that. He did a lot of harm to communities – that’s his legacy.

I don’t have to be sad that a person who spent his life harming communities I’m a part of or I support died. This man is not some amazing person to put up on a high pedestal… unless you want to praise the systematic oppression of anyone who isn’t white, cishet, rich, conservative, American-born, and the right kind of Christian.

It’s okay to speak that truth. In fact, I would say we have a duty to do so because the GOP sure as hell isn’t going to take a break from attacking marginalized communities. They’re still scheming while tweeting out their sympathies.

McCain was horribly racist. He used racial slurs and continued doing so, though less publicly. He played a major part in selling sacred indigenous land to mining companies and golf courses. He also voted against MLK day, later saying he wished he hadn’t. Of course, McCain also elevated Sarah Palin which essentially co-founded the birther and tea party movements. That led to the administration we see today, especially with prominent birther Trump in charge.

Don’t forget that this man thought the ACA repeal effort – the one disabled people put lives on the line to stop last year – didn’t go far enough. He fought like hell to stop the ACA from being put in place. Instead of working to fix it, he campaigned on repealing it after it became law. It floors me that someone who helped with the ADA and tried to pass a patient bill of rights could also be so cruel.

On a more personal note, I didn’t have insurance coverage as a child because my mother sucks. Because SJIA is a pre-existing condition, I couldn’t get insurance on my own covering my SJIA until the ACA passed. It took a few years for me to get a job with an insurance option. I can’t imagine having had to wait until then to get care.

I could have easily died if McCain got his way, either by defeating the ACA initially or repealing it. MANY people would have. I don’t have to applaud him for making it through unspeakable things when he would’ve forced many of us into not dissimilar situations.

He could have saved disabled people. We could have stayed on home instead of being arrested. We could’ve taken care of ourselves instead of spending energy on basic human rights. All he had to do was say he would vote against it. Instead he wanted to pull a publicity stunt at the last second, telling reporters to ‘wait for the show.’

While I cried in bed, wondering what the fuck me and my disabled siblings were going to do without the ACA, McCain sat grinning on the inside like a son of a bitch. He did not care that his cavalier attitude was harming people. We were confronted with losing lifelines and he treated it like a game.

I stopped seeking diagnoses for things going on. I was afraid that whatever is going on neurologically or with my heart would get diagnosed. Without protections from the ACA, I could easily lose the ability to get any current diagnoses treated. McCain literally played a part in my poor health last year.

I won’t do about McCain’s legacy. I also won’t pretend that being a POW means he was a good person. What he chose to do when he got home and involved in politics is important. He chose to harm. He was a good republican.

I won’t speak well of someone who took pride in being a selfish asshole. If you choose to do that, you should re-examine why whitewashing history is a hobby of yours.

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.

 

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 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)
  • 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

 

SOS: Take Immediate Action on HR 620

red background with white circle and red line around circle; red text "SOS: Take Immediate Action on HR 620" and "not standing still's disease" with a wheelchair logo at top
I know there’s a lot going on in our world right now. Please take a moment to help us disabled Americans, though.
HR 620 is being discussed today. This bill severely limits the civil rights of disabled peeps highlighting violations of the Americans with Disabilities Act (ADA).
The following is what I faxed to my House rep using Resistbot. You can do this too by texting RESIST to 504-09:

Please oppose HR 620.

As a disabled person, my rights depend on the Americans with Disabilities Act (ADA) of 1990. HR 620 would severely weaken the ADA, which already is under-enforced.

In addition to limiting our civil rights, it is a classist bill in nature. Requiring specific ADA sections to be referenced requires people to have an intimate knowledge of the ADA, which is not always possible. Regardless, why do disabled people have to continually prove barriers we face?

Please protect my rights, the rights of over a million disabled Wisconsinites, and approximately 57 million disabled Americans.

You can find your House reps here if you don’t already know who they are.

This is especially important to do if your representative(s) are one of the following current co-sponsors:

  • Alabama
    • Terri A. Sewell
    • Martha Roby
  • Arizona
    • Kyrsten Sinema
  • California
    • Scott Peters
    • Ken Calvert
    • Ami Bera
    • Jackie Speier
    • Peter Aguilar
    • Luis J. Correa
    • Jeff Denham
    • Darrell E. Issa
    • Jim Costa
  • Colorado
    • Mike Coffman
  • Georgia
    • Doug Collins
  • Illinois
    • Bill Foster
    • Bobby L. Rush
  • Louisiana
    • Ralph Lee Abraham
  • Michigan
    • Paul Mitchell
  • Minnesota
    • Tom Emmer
  • Oklahoma
    • Steve Russell
  • Texas
    • Michael K. Conaway
    • Henry Cuellar
    • Lamar Smith

You can also take a moment to contact members of the House Judiciary Committee as listed below:

  • Chairman Bob Goodlatte (VA-06)
  • Rep. Jim Sensenbrenner, Jr. (WI-05)
  • Rep. Lamar Smith (TX-21)
  • Rep. Steve Chabot (OH-01)
  • Rep. Darrell Issa (CA-49)
  • Rep. Steve King (IA-04)
  • Rep. Trent Franks (AZ-08)
  • Rep. Louie Gohmert (TX-01)
  • Rep. Jim Jordan (OH-04)
  • Rep. Ted Poe (TX-02)
  • Rep. Tom Marino (PA-10)
  • Rep. Trey Gowdy (SC-04)
  • Rep. Raúl Labrador (ID-01)
  • Rep. Blake Farenthold (TX-27)
  • Rep. Doug Collins (GA-09)
  • Rep. Ron DeSantis (FL-06)
  • Rep. Ken Buck (CO-04)
  • Rep. John Ratcliffe (TX-04)
  • Rep. Martha Roby (AL-02)
  • Rep. Matt Gaetz (FL-01)
  • Rep. Mike Johnson (LA-04)
  • Rep. Andy Biggs (AZ-05)
  • Rep. John Rutherford (FL-04)
  • Rep. Karen Handel (GA-06)
  • Ranking Member John Conyers, Jr. (MI-13)
  • Rep. Jerry Nadler (NY-10)
  • Rep. Zoe Lofgren (CA-19)
  • Rep. Sheila Jackson Lee (TX-18)
  • Rep. Steve Cohen (TN-09)
  • Rep. Hank Johnson, Jr. (GA-04)
  • Rep. Ted Deutch (FL-22)
  • Rep. Luis Gutierrez (IL-04)
  • Rep. Karen Bass (CA-37)
  • Rep. Cedric Richmond (LA-02)
  • Rep. Hakeem Jeffries (NY-08)
  • Rep. David Cicilline (RI-01)
  • Rep. Eric Swalwell (CA-15)
  • Rep. Ted Lieu (CA-33)
  • Rep. Jamie Raskin (MD-08)
  • Rep. Pramila Jayapal (WA-07)
  • Rep. Brad Schneider (IL-10)

For more information:

 

 

A response to Rand Paul and the GOP threatening to raid SSDI

Have you read Rand Paul’s recent comments? Just take a minute and look them over…

“What I tell people is, if you look like me and you hop out of your truck, you shouldn’t be getting your disability check. Over half of the people on disability are either anxious or their back hurts. Join the club,” he added. “Who doesn’t get up a little anxious for work every day and their back hurts. Everybody over 40 has a little back pain.”

Guess what? Sometimes I have the energy to look nice. Sometimes I HAVE to look nice for things when I don’t feel like doing so. Sometimes I just wake up like this.

Don’t judge me on how I look sir, because I’m pretty sure you wouldn’t want the tables turned. You definitely don’t look like a president to me, but like someone who became powerful riding daddy’s coattails and is trying to stay relevant.

Republicans haven’t said what they’ll do, but [Rep. Sam] Johnson [Texas Republican] has previously sponsored legislation that increases punishments for disability fraud, which he characterizes as rampant. The Government Accountability Office estimated in 2013 that about 1 percent of benefits were fraudulently paid to people who could work. In its latest annual report, the Social Security Administration says 14 percent of disability beneficiaries suffered “mood disorders” and 27.7 percent had diseases of the musculoskeletal system or connective tissue, which would include back pain.

Hey guess what is included in that 27.7%? I’m guessing the rheumatic diseases. Would you like to know how fun it is to hobble into the bathroom on mornings I’m in extra pain? How about how terrifying it is to have a bowel movement in the morning when I haven’t taken my meds yet and my hands don’t really work?

Or how I’m impacted by not being able to be intimate with my husband as often as I’d like because I can’t move the right ways? How about what happens when I can’t wear clothing because my fibro is killing me, and how even sitting on my couch is killer? How I can’t even hug someone or hold hands because it hurts so badly?

Or maybe you’d like to have multiple deformities with surgeries every couple of years to try to fix things?

Also, mental illness can be very crippling, so don’t discount that. You can’t do anything, and it starts to impact your physical well being, from issues stemming from lack of self care (lack of hygiene making you sick) to very real and meaningful physical pain. Don’t you dare take away the few resources available for those suffering from severe mental illness.

I WILL move to Canada you guys.

Also, more maple syrup there than Wisconsin. Go figure.

Paul’s office said the comments were taken out of context, and forwarded the following statement from the senator on Wednesday afternoon:

“We absolutely should take care of those truly in need of help. But the system is broken, and when people can game the system, they are stealing from those who are truly disabled and won’t receive the care and aid they need,” Paul said.

Sure they were, Rand.

Here’s the deal. Are there people who scam the SSDI system? Definitely. You know what you need to do to combat this? Put more funding in the fraud department who can investigate the claims against those who may be committing fraud. Here in Wisconsin, there is something like 3 people in the fraud office. They will NEVER get through all the tips to investigate people.

There are people who rightfully deserve SSDI. Do NOT punish them because of the few bad eggs.

2014 Arthritis Advocacy Summit Recap

I’ve really fallen quite behind again in posting things, but the craziness has (kinda?) died down a little bit. Count on some more regular postings soon 🙂

For weeks, I had been on edge. I had neither traveled on my own before nor been to DC. As someone living with a type of autoimmune arthritis, this frightened me to no end. I knew that I would be around others advocating for the same causes, but would I be able to do all this running around? Would I be able to complete my tasks for each day, and still have enough spoons to participate in dinner or other activities? I was concerned, and questioning my ability to go and do these things. In the end, I ended up going – and I can’t even express how glad I am that I was able to go.

When I arrived on Monday, my first order of business after checking in was to attend a lecture on arthritis research given by Dr. John O’Shea of NIAMS. He discussed a lot, but focused on the advances in technology and how they make all the difference. He also spoke about the JAK inhibitors, like Xeljanz, that he has helped to develop through his research. It was an amazing way to start out the summit. I would be lying if I said I didn’t get teary-eyed during his lecture or the Q&A portion towards the end. These new treatments mean that we can help to treat those for whom other drugs didn’t work. It means that we have new avenues to explore, new weapons to launch and to research in the future. It also means that, hopefully, the number of people I know of every year who die from complications related to their arthritis will go down.

Later in the evening, we had our orientation meetings. As a first-timer, I sat in on the beginner’s section, where Laurie Markle and Michelle Guadalupe walked us through the issues, how to talk to politicians, and more. As an Arthritis Ambassador, it was great to get to learn more about these integral staff members of the foundation and to get to meet them, as I often hear their voices on calls or receive emails from them. It was also a little bittersweet, as Laurie moved to Zambia Thursday after the summit wrapped up. She has done a lot to help push a number of bills through through her work both with the summit and the ambassador program.

I was able to meet up with another person dealing with Still’s for dinner. It was great to be able to really connect after spending much time discussing the issues we face together. It added another layer to the idea of this summit – that I’m not alone, and I’m not the only one who will fight with everything I have to get us to a cure.

There was also a teen meet and greet that I was pretty tempted to crash to be honest. Growing up with this disease is isolating and it’s fantastic when you can be around younger people who share your pains as well as your zeal for advocacy. I figured in the end, though, that this 20-something should probably get some rest.

Tuesday was a very long day for us, jam packed schedule-wise. We hit breakfast bright and early with our state coordinators and others before moving into another room to hear from our new CEO and president Ann M. Palmer. It was refreshing to hear from her, and to see her interact with others during some of the downtime. Dan McGowan, chair of the Board of Directors, introduced her and started off the summit right by stating that the advocates were the “special forces of the arthritis population.” We heard from Congressman David B. McKinley (R-WV), who was given the 2013 Congressional Advocacy Leadership Award for his dedication to our causes. It was inspiring to listen to his views on helping others, especially as he talked about his personal struggles with hearing issues and how he wasn’t here to make a career in politics but to institute change. At one point, he stated “Many of you out there can’t vote for me, but I can vote for you.” It was enough to leave this gal teary-eyed.

 

We also were able to hear a lot from Christopher Kush, who is the MPP of Soapbox Consulting, on how to better get our messages more clearly to our representatives. He brought in several people to represent the asks we were going to discuss, including Beth – a young girl living with the same disease I face and also dealing with access to treatment issues.

 

Since my state had a small delegation, we separated for lunch and met up to catch our bus up to the senate meetings later in the day. We met with legislative assistants for Wisconsin’s senators, then headed back to the hotel. At this point in the day, my body was tired, so having a few moments to slather my joints in BioFreeze and take a bath was great.

At dinner, we celebrated several activists working hard for change as well as the most involved in the Arthritis Ambassador program. We then heard from Brian Teacher, 1980 Australian Open Singles Champion. After some networking, I went upstairs to get packed and rest up for Wednesday.

We met early for a boxed breakfast before our first meeting over at the House offices at 9:30 and did our drop offs – where we ran into this amazing setting for a picture.

 

Our next appointment was at 1 and some of the members of my delegation had to leave due to travel schedules. In between my meetings, I explored the surrounding area, taking in the Supreme Court and the grounds of the Capitol. I was hoping I might get to snag a picture of my Joey B, but alas all I saw in the immediate area were guys and gals with big big guns.

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For my meeting at 1, I met with the representative for my district, Mark Pocan. We met in September to discuss HR 1827, and he became a cosponsor of that, and HR 460, shortly thereafter. I’m incredibly grateful for the support that he and his predecessor (now-Senator Tammy Baldwin) continue to give the Arthritis Foundation.

 

I took some time to visit the Folger Shakespeare Library, which was fantastic. Coming back, I had an awfully hard time catching a cab, so I walked from the Capitol Building to the Washington Monument – a whopping 16 blocks!! I was definitely sore! I caught the metro (which I love btw) to a friend’s house, and it was really great spending time with her.

All in all, during the three days I was at the summit I walked about 30 miles – 12 alone on Wednesday. I met with two representatives and the legislative assistants to our two senators. I met up with and ran into friends and others I admire, and met new people with whom I hope to keep in touch. I learned more about innovative research and more about how each state is affected by this umbrella of diseases. I laughed and cried listening to these stories, to stories that are similar to mine. I’ve known for some time that I am not alone in what I live with, but to truly interact with people on this level really hammered it home for me. I learned more about myself through these interactions, traveling alone, and visiting awe-inspiring sites. Perhaps most importantly, this trip cemented what I’ve known all my life. It also gave me a sense of self – I know now that I can be self-sufficient in a way that I’ve not really experienced on a big scale before. Honestly, and this might make me sound full of myself, I walked away being proud that I was able to do so much.

I grew up with dreams of working at the UN and solving the world peace issue, only to have those unfortunately crushed due to my worsening condition forcing me to drop out of graduate school. For a long time, I was depressed. My whole life I focused on this career that was now out of reach. When I joined the Arthritis Ambassador program, I thought that it would help heal some of that pain by giving me a little piece of that dream. This summit allowed me to both experience even more of that dream, and really lit a fire in my soul to step up and truly be an ambassador. It has given me more contacts, more stories to share, more people to lean on and ask for help.

Want to see more pics? Click here!

MTX and Protests

Oh Wisconsin, I love your craziness.

The governor is totally being a killjoy and trying to remove the rights of unions to bargain… Also, he’s going to screw up my school, and we aren’t standing for it. What he’s doing is removing the tuition remission for TAs, which essentially will screw up the school as a large percentage of classes (especially languages) are taught by TAs… who will now not have enough money to attend the school.

But it got me to thinking that protesting is similar to fighting a chronic disease.

As I was standing the the capitol building, shouting and protesting against this attack on our rights, it really hit me. I protest everyday, by taking my medications and by living my life as normally as I can.

We lowered my dose of MTX and I’ve started to take 2 pills in the morning and two in the PM. This is my first week like that, and I’m hoping it helps my side effects go down. But hey, I think it’s really helping so I’m excited about that.

Well, it’s either the MTX, the unseasonably wonderful weather, or the smell of protest in the air… 🙂