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 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





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.

General


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.

Specific


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.

Location-based


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.

Tips


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!!





Monday, September 11, 2017

CBD Resources

thickly black outlined square photo of greenery with white text at middle "CBD Resources" and at bottom middle "not standing still's disease"

With how much many patients have been utilizing CBD (Cannabidiol) oil, I wanted to list some resources here for people to learn more about it.

Sites:

In addition to listing various ways you might find CBD, they've pulled together a large list of conditions and what CBD does for them. They're also super nice.

This site has a great collection of information on all things CBD. From their beginner's guide to videos to a clinical journal, they have a lot to offer as well.

Other popular sites about CBD (and marijuana itself) include Leafly Medical Jane, High Times, The Cannabist, and NORML.

Get CBD:

Canna Treehouse offers the lotions I mention below from The Fay Farm in addition to a variety drops, mints, lotions, and other items.

Liberty Lotion is one of the first affiliates I've had on this site. I've tried their tincture (see below for review) and their lotion, and love both. They have lip balm as well that I'm dying to try. If you use the code NSSD, you can save 10% off any order!

My Reviews:
Bonus: Me discussing using edibles (and pot) for the first time

Research:
Make sure to check on laws for your state if looking at CBD oil containing THC or marijuana.

Last updated Sept 2017.





Friday, September 8, 2017

Nortriptyline, Day 9 & Spine PT

photo of a lightbulb hanging down with a white line down the right side and a black box on the bottom with white text: "Nortriptyline, Day 9 & Spine PT" and "Not Standing Still's Disease"

First, the nortriptyline update: The nausea is still strong. I spent all morning yesterday running errands post-doc appt while trying not to throw up. I'm still dealing with headaches - well, until this morning, because I finally got some real sleep.

My appointment yesterday was with my GP to talk about my bulging disc. She's sending me for spine PT which starts on the 18th. If that doesn't help in the next 4-6 weeks, we'll talk again and consult someone about what else we might be able to do before moving to surgery. This means I'll be doing pelvic floor PT and spinal PT at the same time.

She also gave me a new script for cyclobenzaprine. I used to take that regularly and then my former rheumy stopped prescribing it, and the newer one didn't want to. 

Of course, I had to sit through the 'losing weight helps' speech at my appointment. I'm so tired of hearing that, especially as I'm saying I can barely sleep, walk, and do anything. Like, that's not the time to lecture me on my weight.

The cyclobenzaprine, even at a half dose, helped immensely. I was able to sleep last night, in my bed. It's been weeks since I woke up in my bed at a normal time.

I even slept another few hours this morning.

All that said, my headache/migraine is easing up with the sleep. My back pain is becoming more prominent, though. I'm not too worried about that for now, especially since I only did a small dose of my cyclobenzaprine.

Maybe now that I'm able to sleep more, the nortriptyline will start working.





Thursday, September 7, 2017

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:







Tuesday, September 5, 2017

Help Tell the World: #PatientsHavePower


I am proud to announce that we are official participants in the Patients Have Power campaign run by Clara Health (who runs the Breakthrough Crew!).

This campaign is a Boston based initiative aligning the world’s epicenter of healthcare around one message: Patients Have Power. The movement is comprised of patients, caregivers, allies, nurses, doctors, researchers, members of the healthcare workforce and anyone and everyone who believes in patient power all around the world.

I believe patients should be empowered with the knowledge and resources they need to hold the ultimate power in their healthcare journey and are proud to say that we live the mantra: Patients Have Power.

Interested in getting involved? Show your support by participating in the following:

Declare your support: Join our #PatientsHavePower campaign on Twitter. Click to tweet.

Join the Thunder: Add your voice on Thunderclap to help the message spread! Register here.

Twitter Chat: Join the #PatientsHavePower chat on Thursday, September 7 at 3:00 PM EST.

Patients Have Power Signs: On Thursday, September 7 take a picture of yourself holding up a Patients Have Power sign and share on social media.

Nice cream social & card making: Swing by Mother Juice Kendall Square on Thursday, September 7 between 12:00 and 5:00 PM for vegan ice cream and card making for hospital patients. RSVP here.





Monday, September 4, 2017

Nortriptyline, Day 5

photo of wooden planks with mint green thin bars at top and bottom - in the bottom bar white text "Not Standing Still's Disease" - at middle a pinkish thicker bar with white text 'Nortriptyline, Day 5"

Last night was my fifth dose of nortriptyline. As noted previously, there isn't expected to be much improvement until later on once the medication has been able to build up in the system.

The nausea is easing up a tad, though not much. It seems to be more recurring than constant which is an improvement. That said, after dinner last night, I nearly threw up everywhere.

I put the other half of my pizza in the fridge and decided it was a good time to get out my daily Kineret shot so that it could warm up. It makes the shot hurt a lot less and I wind up with fewer bruises and marks that way. We keep my meds in what would be the meat drawer in a normal household. This way they're more insulated if the power were to go out, but they're also always in the same spot and don't get crushed if I drop a Coke can, etc.

I bent down, took out the box, grabbed a shot, and set it on the counter. As I bent back down to put the box back, I got nauseous. As I came back up - something that's been giving me trouble lately anyway - I nearly threw up. Twice.

After a mad dash to the bathroom and sitting in front of the toilet for about ten minutes, the feeling passed and I was okay.

I definitely felt like I was on the verge of throwing up all night, though.

Whether or not this is med-related, I don't know. I do know that my nausea has generally increased due to this med, but also that my GI tract isn't processing food the right way. Since I had just eaten a real meal, it could be more due to that than the meds.

From a migraine perspective, I haven't really noticed much improvement. I'm still waking up with some headache that may or may not improve after taking my morning meds and stretching.

I do feel like my mood has improved slightly. I can't say whether that's from the meds, the pain easing up, or the long weekend and spending more time with T.

On another note, my back pain has eased up a bit as well. I believe the EMG and nerve conduction study amplified my pain for a few days, a combination of laying on an uncomfortable exam bed for over an hour and my already angry nerves being zapped.

That said, I've also been moving in ways that are within limits my body is currently setting instead of trying to push myself so much. I could see that helping as well.