September 2017 - Page 2 of 2 - Not Standing Stills Disease

CBD Resources

Posted on September 11, 2017December 5, 2021 by Grayson

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:

Cannabidiol Life

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.

Project CBD

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.

Nortriptyline, Day 9 & Spine PT

Posted on September 8, 2017December 5, 2021 by Grayson

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.

SOS: Take Immediate Action on HR 620

Posted on September 7, 2017December 5, 2021 by Grayson

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:

Help Tell the World: #PatientsHavePower

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

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.

Nortriptyline, Day 5

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

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.