Year: 2017

Double-Duty PT Starts Next Week

Posted on by Grayson
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!

 

Financial Resources for Chronically Fabulous College Attendees

Posted on by Grayson
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!!

 

CBD Resources

Posted on by Grayson
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.

 

Nortriptyline, Day 9 & Spine PT

Posted on by Grayson
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.

 

SOS: Take Immediate Action on HR 620

Posted on by Grayson
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:

 

 

Help Tell the World: #PatientsHavePower

Posted on 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 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.

 

Nortriptyline, Day 1

Posted on by Grayson
square photo with thicker outline in black on the left side and white on the right side; pic in the middle is capsules in a pill bottle top, but distorted and unfocused; white text towards top middle says "Nortriptyline, Day 1" and bottom middle says "not standing still's disease"
As I brought up yesterday, my neurologist started me on Pamelor (Nortriptyline) as a preventative for migraines. It can help others when the right dose is reached. The pharmacist told me it could take over a month for this medication to start working. To help others, I wanted to document how this process goes. This won’t be a daily update, but every so often.
I wrote the post yesterday after taking this first pill. It was recommended to take it at night as it can cause drowsiness.
By the end of writing that post yesterday, that hadn’t kicked in as much as nausea had. It was really bad.
I spent time in bed, trying not to vomit.
I also couldn’t get comfortable at all. I was laying in bed and snuggling my husband while breathing like I was giving birth on top of the nausea. The pain in my lower back was so severe that I thought I was going to pass out. I should’ve said something to T, but I physically could not.
There was no way to take my attention off the pain. It was so all-consuming – far worse than it’s been recently.  That’s scary on its own. I just set up an appointment with my primary care doctor to discuss what to do with this disc after messaging back and forth with one of the nurses.
As for the nortriptyline, I have not noticed any improvements regarding my headache/migraine-topia as of yet… nor did I expect to.

 

Today, I Had to Beg for Migraine Control

Posted on by Grayson
B&W photo of a hand holding three pills (two capsules and one tablet); underneath is a yellow-cream bar with black text "Today, I Had to Beg for Migraine Control" and under this a black bar with white text "not standing still's disease"
Today was my follow-up with neurology, which also happened to be for an EMG and nerve conduction study.
Over the last few days, I’ve been doing research around what might be potential differential diagnoses for what I’m facing. I did research, read research others sent me, and bounced ideas off other smart people. I put together a list of tests I’d like ordered, possible diagnoses, concerns, symptoms (new and old), etc.
And didn’t get to do a goddamn thing with it.
The EMG was uncomfortable. Essentially, they’re sending electricity up and down certain nerves in order to gauge how ‘normal’ nerves are functioning. Obviously, this results in the movement of limbs without trying to move. Both the test and the reactions are uncomfortable and not fun.
The nerve conduction study, also called the needle test, consists of sticking a needle where a nerve and muscle meet. Then, they have you move in a way that would stimulate these nerves while the needle gauges how well the nerve and muscle are communicating. For me, this was far more uncomfortable – maybe in part because some of this was done near my bulging disc and middle of my back.
All of this is done with no medication. The needle test winds up leaving blood spots all over, resulting in interesting looks if you go out afterward.
While this all was uncomfortable and even painful, this wasn’t what bothered me the most about my appointment.
After going through these tests and them not finding anything, I asked my neuro if the bulging disc could be causing/exacerbating symptoms. He flatly dismissed this.
He then returned to my chart and began to look at my medication list. He said he was leery of putting me on anything to control my migraines because I was already on ‘too many medications.’ I explained that I have multiple diagnoses, so obviously I’m on meds for these. He countered with concerns on contraindications and interactions.
He literally didn’t want to do the work to check which medications I could take. I had to make a case for getting my migraines treated. I literally had to beg for pain relief.
I explained that nothing I’ve been using to treat my migraines is helping anymore. I’m having them more often as well. This is what I was referred here for, after all, to control my migraines.
He relented, asked if I’ve been on a tricyclic antidepressant before, and said he would add one and then check the contraindications and interactions to make sure it was safe for me to take.
Yes, the antidepressant he prescribed can be useful in preventing migraines for people. However, I also wonder if this is some way to get a young femme out of his office and to stop annoying him. When doctors don’t know what to do – or don’t believe the patient is in pain – antidepressants are often the go-to drugs.
I find it odd, too, that he would prefer sticking me on a second antidepressant daily to working with a relief medication for when I do get migraines I can’t control through other means. There is a higher chance that I could deal with a severe mental health issue here compared to other, lesser side effects with heavy hitters.
All of that, and I don’t go back until December 1st. I’m supposed to call in a month to report back how the medication is doing, but that’s it. No further tests around my nerve shit, and no more working down that path to a diagnosis for that.
I walked back to my car and cried. I’m very upset. It’s just like my initial illness stuff in 1993/4 and getting a fibro diagnosis between 2010-2012. The whole thing just screams old white cishet abled paternalistic doctor dismissing young femme(ish) patient’s invisible pain, and I can’t live like this for too much longer.
I shot my GP/GYN a note and explained about the bulging disc. I also explained that I do acupuncture – a common first-line in reducing pain, according to this med system’s website – and I wanted to see what else we need to/can do to deal with this. I’ve barely been able to sleep and, when I do, I usually wake up around either midnight or 5 am to move to the couch because of pain.
This whole day went to shit. I should not have had to beg for control of my migraines, especially when it’s because a doctor couldn’t pull up a goddamned color-coded alert in the MyChart system. It’s not like he even had to look on Drugs.com like a normal fucking person.
UGH.
I cried, drove to Target to get my new script (fawning at the gorgeous pharmacist like the queer newbie I am), and rage ate a large frozen custard with peanut butter cups. No, not the best decision, but something I needed to do for me right then.
And so was pizza because fuck cooking tonight.
No one should have to beg for pain relief, especially when it takes so long to even get in front of a doctor who can help. Period.

 

Research Mode: Expert

Posted on by Grayson
photo of a lab setup with beakers and test tubes filled with various colored liquids; under this is a white background with green text "Research Mode: Expert" under which is black text "Not Standing Still's Disease" and under that is a line of diamonds in the same green color as the other text
When I was little, doctors couldn’t figure out what was going on with me. We had to find an answer and bring it to them. This seems to be a running theme in my life.
My recent “bladder cramps” (we think?) were investigated. Nothing odd showed up on my transvaginal ultrasound or in test results. *I* had to check back in with my GP (also an OB/GYN) and see if she thought pelvic floor therapy would be a good idea. After several days (and asking me to re-explain symptoms in my records from our last visit), she said yes.
Now, with another neurological test on the horizon, I find myself doing the same thing.
[Book with a dark background and cells/biologic drawings on it; "Pathophysiology: the biologic basis for disease in adults and children" by Kathryn L McCance, Sue E Huether, Valentina L Brashers, and Neal S Rote]
Obviously, having a rare disease is tricky. Knowing more about my familial history of weird undiagnosable neurological stuff makes it extra fun. Naturally, I’m starting to do my own research on some things.
Because, again, running theme.
My latest MRI showed a bulging disc that was noted to be more severe in my records (that I received on Friday) than was listed in my test results. Instead of listing just that there is a bulging disc at L5-S1, it lists the following:
L5-S1: There is a broad-based disc bulge with more prominent far lateral components causing mild-to-moderate left and mild right foraminal narrowing. No canal stenosis.
Now, that makes it sound worse than a simple wear-and-tear or overweight-patient version of a bulging disc, right? I think so.
What is also important to note here is that the bulge is worse on my left side, just like anything else in my body. Based on my pain, I knew this already. However, it is somewhat bilateral (on both sides), which is important to note as well.
This also sounds much more like it could be contributing to my symptoms – and even potentially the “bladder spasm” stuff. Of course, neither my neurologist nor my GP/GYN have addressed the disc… which pisses me off.
In addition, I’ve begun having headaches that start intensely anytime my head goes forward past a certain point. When this has happened before occasionally – mostly after being very physical – I’ve been able to ease them by relying on my chest for this movement as opposed to my head/neck. That’s not the case now, nor is it only when I’ve been active.
It really sucks, especially on top of the other symptoms. That said, it does keep pushing me in the direction of more rare conditions like a CSF leak. To be honest, when my symptoms could be relieved earlier this year with being horizontal, I thought this could be a thing – and this can happen in the spine.
I should know more once I get my medical images and/or after my EMG and nerve conduction test on Wednesday. I’m hoping I can also start a medication for migraines, which should have been done already.
Oy.
I’m not ecstatic about these tests. However, I know that they might help yield some answers. I’m just hoping the range of testing that lies before me won’t also cause a ton of extra pain. I’m not equipped to deal with as much as I’ve been facing as is. Adding more in without adding in any actual painkillers might, well, kill me.
Not if I find the answer first.