health adventure Archives - Page 3 of 9 - Not Standing Stills Disease

Migraine Relief is a Beautiful Thing

Posted on May 11, 2018December 5, 2021 by Grayson

Back in mid-April, I finally had a good appointment with my current neurology office!

After months of begging for migraine control, I went into this appointment prepared to issue an ultimatum. It felt clear that they didn’t care enough about my quality of life to give me medications that I need. I’ve been through the migraine treatment ringer in the past – this isn’t a new path for me. Telling me to get more sleep when I’ve been dealing with painsomnia since kindergarten.

When I walked in, I was fully prepared to give this schpeal I’d rehearsed in my head for two days.

Instead, the NP came in and asked how things were going. When I was done sharing my migraine frequency and details, she just went “Let’s get you some meds.”

It’s great to have a positive ‘the fuck?’ lately. Still, I’m really frustrated that it took so long for them to give me actual medication. My quality of life has sucked for a while around migraines. I try to push through, but I always pay for it. Why do I somehow have to prove it to providers by having to live in hell?

I’ve had rizatriptan for just under a month. She prescribed me 9 pills a pop and I’ve already picked up a third fill. In the last few days, I’ve had to take a few of these.

It’s absolutely life-changing.

I can’t frankly put into words how much I appreciate the ability to have more control over my health. To take away some of the unpredictability, it gives me back more confidence. I’m more able to participate in events and get shit done.

It’s incredible.

On top of that, those 9 pills are only five dollars. To think that $5 and jumping through hoops was keeping me from getting relief is bothersome at best.

Here’s to fewer migraines!

black glasses folded up next to a silver laptop with a blue overlay and white text on the left side: " Promethease Can Get You More From Your 23andMe Data " and " Not Standing Still's Disease "

Promethease Can Get You More From Your 23andMe Data

Posted on May 8, 2018April 27, 2018 by Grayson

A while back, I took the 23andMe plunge. While there are always concerns about how data gets handled, I enjoyed the process. I still log in a few times a month to participate in research questions. Still, I wondered if I could get more out of the data they processed. Enter Promethease.

Using SNPedia, Promethease gives you the good, the bad, and the neutral data around your genetics. It’s fairly cheap at around $10 to start and they’re always having freebies – like, right now through May 10th, you can get your report for free.

Once I saw they were offering another freebie, I jumped at the chance to put in my 23andMe data.

It only took about 15 minutes for them to process the raw data from 23andMe. After going through the report, I feel like I have some potential directions for my neuroWTF. Where I really spent time was in the uncool section of my report – the bad.

What I found is that I’m at higher risk for diseases including RA (LOLOLOL), Alzheimer’s (up to 11% more likely), Crohn’s Disease, and Ankylosing Spondylitis. I learned that I have a slow metabolism, especially for steroids, hormones, and protein. I also have a lower response to inhaled steroids… AKA having to use my inhaler a few times to get relief makes a lot more sense.

One of the most interesting things was to learn that I’m likely a carrier for phenylketonuria – a condition that is fairly similar to some of the reactions I have to phenylalanine-containing products. I can’t do diet sodas, sugar-free anything, or even chew most gum.

What I really appreciated was linking these issues to studies around specific genetics. I am 4.6 times more likely to have Ankylosing Spondylitis, for example. The piece that shares this and which genetic component(s) were tested for it has links to the research providing the hypothesis around that figure.

In short, they give you likelihoods and the reading to dive into should you want to learn more. It’s a great tool for engaged patients. It doesn’t seem to matter where you got the data initially (23andMe, Ancestry, etc.) as long as you have the raw data or can grant Promethease access to it.

And, for those concerned about your data? You can download all the information and it’s wiped from their site after a little over a month.

The one negative is that the data is tedious to go through. I had nearly 400 items in the negative category, and a lot of those were repeats. I wish there was an easy way to fold everything up to see various conditions and your increased risk per published paper.

This was way faster than getting the tests actually done, and it’s really nice to have all this raw data. It’s absolutely a service anyone interested in digging more into their genetics should try out.

What do you think? Have you tried Promethease yet?

Tough Decisions Ahead

Posted on January 29, 2018December 5, 2021 by Grayson

The last few weeks have been incredibly difficult.

On the last half of my prednisone burst, I started experiencing worsened arthritis symptoms. Once the burst was over, I was exhausted AF.

I saw my rheumatologist two weeks ago for a scheduled follow-up, and it was good timing. I’m clearly still flaring. We did a triamcinolone injection that really didn’t help. This week she wants to try a second shot to see if that helps.

It’s hard. I have so many things to work on, things to do. I’ve had to slow things down a lot. Standing in place for more than five minutes is horribly taxing. My knees have been swollen every single day with hand swelling and pain popping in most days of the week, too.

The hand pain is frustrating because things like using my cane that would be helpful just aren’t feasible. My canes both hurt my hands far too much to be for daily use when I’m dealing with such hand pain. It’s probably time to start considering more heavy duty assistive devices, but I’m not sure what would work best for me, either.

A wheelchair seems like a good idea until I recall how much pushing my hands would have to do – likewise with a rollator. With conferences coming up, though, I need to at least consider making a decision.

I don’t like these tough decisions. I will say, though, that I’m far less afraid of using these things than I would’ve been in the past. Having friends who rely on these things is helpful, and talking together is even more useful. I’ve been able to confront the internalized ableism I’ve held since childhood about assistive devices.

Double-Duty PT Starts Next Week

Posted on September 19, 2017December 5, 2021 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!

Research Mode: Expert

Posted on August 28, 2017December 5, 2021 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.

Latest MRI Results

Posted on August 15, 2017December 5, 2021 by Grayson

In my last health update, I shared about how I had an MRI coming up on what was last Friday. In reality, it was two MRIs scheduled back to back (HA!) – one of my thoracic spine and one of my lumbar spine.

The MRI team was great. We talked about tacos, guinea pigs, and fun things to do in the area. More than that, they were incredibly caring and very helpful.

I took a Valium before the MRI and it worked much better than the last time. I was incredibly groggy and wound up sleeping for a good amount of the time I was in the machine. To be honest, I don’t even remember how much of the time I was awake.

That was perfect – exactly what I needed since my head got to be in the most narrow, coffin-like part of the machine for nearly the whole time.

T and I went out for tacos at our favorite local place, and then I came home and slept for a few hours, waking up incredibly alert and ready to do things. In the middle of writing my last paper for my masters, I got an email about my test results.

My thoracic spine MRI came back completely fine. This part of the spine, for those unfamiliar, is between the neck and the lower back. My lumbar spine, though, did not.

“At L5-S1, mild broad-based disc bulge results in mild to moderate foraminal narrowing on the left.”

Yeah, I had to look that up too, but I knew it wasn’t great. The note said that these were ‘degenerative’ changes, though knowing my body this may not be entirely true. The short story is that I have a bulging disc, causing stenosis that is smooshing some nerves.

Now, the note from the radiologist in my test results says this isn’t causing my symptoms. After doing my own research, I feel like this could be, though. Everything I’ve found discusses how back spasms can be a part of this – something I’ve had since 2012-ish but was told this was due to scoliosis that my physical therapist at the time and I found on my X-rays.

Anyway, the symptoms can include pain (duh), muscle weakness, pain along nerve paths, pins and needles or hot feelings, numbness and tingling in the extremities, and more.

The symptoms that worried my neurologist as I explained them were bowel and bladder incontinence that came up during my last big neurological thing. It’s important to note, though, that having IBS can explain that in conjunction with all this. Think about it – muscle weakness and an already-upsettable GI tract?

My back pain is becoming more prominent. I think part of it is because I know this isn’t something to dismiss as I was told to when it was ‘just’ scoliosis-related pain. Thinking back, the summer of 2012 is the first time I also had some of the neurological symptoms I’ve complained of recently, including issues with temperature regulation.

It could certainly be coincidence, but I don’t know. We shall see. I haven’t heard directly from my neurologist’s office. I suspect I will sometime this week, though. If not, I know that my EMG coming up on the 30th is with him so we can talk more about things then.

Health Update: Yet Another MRI

Posted on August 2, 2017December 5, 2021 by Grayson

Back in March, I had seen a neurologist in one health system. The entire department left and I got a referral to the department in the other system. Unfortunately, my initial appointment wasn’t scheduled until the end of August.

I woke up Monday morning at 8 am to a call from neurology, though, to offer me an appointment at 8:30. I got up, took meds while on the phone, and sped over to the clinic. My primary doctor only referred me for my migraines, leaving out the weird neurological stuff I’ve been dealing with all year.

I made sure to share what was going on, though, on the off chance he would be as concerned as I was. And it paid off.

We honestly didn’t talk very much about my migraines. I wish we had a treatment plan there, but I also understand that my symptoms would be more alarming. Doc ordered an EMG to test my nerves for the end of August. I also have another MRI on the 11th to check the rest of my spine.

I didn’t even need to bring it up, but doc was upset that this hadn’t been done before. He might’ve been more worried than I was, which was a nice change. Various illnesses and nerve problems can be found further down the spine and not always sit in the head and neck… including MS which keeps popping up as a potential.

We will see what the MRI shows and go from there. Since the EMG is done by the neurologist himself, that will be a follow-up appointment with him and I can bring up a treatment plan for the migraines.

These are all tests I asked my previous neurologist for before he left, and there just wasn’t time or he didn’t think these were necessary. It was so validating to have someone new share my concerns without me even having to state them. I’m really grateful that I was able to get in early and get things moving more towards a differential diagnosis.

For now, though, I’m off to D.C. to present on chronic pain and sex!

Check Yourself Before You Wreck Yourself

Posted on July 12, 2017December 5, 2021 by Grayson

I saw the rheumy today as planned. I was a little concerned that she would chastise me for not adhering to a Mediterranean diet.

To be honest, I was more concerned that she would be upset that I wasn’t really eating due to a lack of appetite, but I forget how awesome she is sometimes.

“It’s okay to just snack. Who says you need full meals all day? Just get something in there.”

That eased a lot of concern I had around my diet stuff. We talked about my shoulder, too, and how I need to let her know if it’s still bad by the end of the month. She’ll plan on injecting it to help stop it from going full frozen shoulder again.

Otherwise, I don’t have to see her again until January… though, knowing my body, I’ll need a more urgent visit sometime in the fall at the very least.

me in a reddish-purpleish shirt in front of a brown clinic wall with boring art behind me; a snapchat filter has turned me into a unicorn with a white horn, white ears, and white glasses, as well as adding a bit of rainbow to various parts of the photo

I’ve had a really busy schedule this week – so busy that I’ve been ignoring pals to do self-care. It makes me feel rotten, but I also needed to do it. I had a boudoir shoot yesterday (which was SO FUN!) and, while prepping for that, found a scary mole change on my pubis.

While I talk about this kind of stuff more at Chronic Sex, it’s worth mentioning here, too – check things checked out.

I’ve always had a mole there. Hell, when I had chicken pox, one grew under the mole! I honestly thought it was a cute thing – until I looked down while grooming and saw that the pinprick mole had turned into something the size of the end of my pinky.

*Cue internal screaming from a sexuality educator*

I decided that it would be good to call my primary care doc’s office to see when I could get in. There’s usually a fairly long wait and, while this didn’t hurt, I wanted to try to get there as soon as I could. It turned out that she had a midday appointment today so I made my way from one appointment to another.

It turns out that I have Seborrheic Keratosis, which is just a fancy term for a benign (but scary-looking-to-newbies) skin growth. It can itch and get waxy feeling, so I have to be careful not to scratch it off!

While I was there, I brought up some pelvic pain that’s woken me up in the middle of the night. The pain is intense and often feels similar to the spasms I get in my back, but they’re in my bladder or somewhere in my reproductive system.

Right now, the thought is this is indeed bladder spasms, but we want to make sure there are no other issues going on. We did an impromptu pelvic exam today as well as tests for a variety of things – sexually transmitted infections, bacterial growth, etc. I also go for a transvaginal ultrasound on the 24th to rule out any growths or cancer within my business.

It feels weird to be a sexuality educator with ‘pelvic pain’ listed as a health issue in her chart. That said, I’m glad I brought this up today. It’s been an off-and-on thing for a while and, combined with the skin thing, was enough to scare me at the very least.

Get yourself checked out anytime you think something isn’t right. I would never have known my giant mark was Seborrheic Keratosis otherwise. Like the article I linked to above states, it’s scary for people to see this randomly and is often mistaken for a cancerous growth.

Productivity

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

T is away for the weekend, which means I’m working on getting a lot of things done around the house. It was already my plan but definitely became a necessity after the fibro flare I was dealing with earlier this month.

I’ve been behind on so much from cleaning to putting things away and more. It’s really hard to do those kinds of things if your body doesn’t want to even wear clothes, ya know?

I’ve been keeping some of my cleaning plans under wraps – AKA not telling T everything I plan to accomplish – because I don’t know if I’ll be able to do it all. If I don’t share those things, maybe I won’t feel as guilty if I don’t accomplish them.

One of the big things on the list was to pay the $650+ in medical bills I had sitting around.

[gradient photo from yellow (top) to purple (bottom) of me with the back of my hand to my mouth and looking away from the camera]

So many of those bills are from trying to figure out what these new symptoms are from. It stings to have to pay over $400 alone for my MRI – a test which didn’t find anything. Don’t get me wrong – I’m glad that there isn’t any obvious brain and neck stuff, but I want answers.

I wish that we knew what was wrong – then, I would at least feel justified in paying so much.

Oh well. Off to soak my woes in guinea pig laundry, dishes, and cool things.

Help Me, House – You’re My Only Hope

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

Since all my tests thus far have come back negative, I’ve been picking my own brain trying to figure out what in the hell I’m experiencing.

I have great doctors who are willing to help me figure out what’s going on, but it takes so much time and the not-knowing is almost worse than the knowing – at least with knowing comes plans and treatments and the like.

Up until now, I’ve felt very focused on a few differential diagnoses that I found and felt certain these matched. Tests so far have ruled these out (ish – none of these tests is 100% conclusive so there’s that).

It made me wish House, MD was real.

He would greet me and sit with me as we went over my family history, personal health history, and tests done so far. He’d made crude jokes that I’d laugh at because he’s handsome and – well, you get the picture.

Most of all, I wanted his team working on their whiteboard of symptoms, examining things and ruling things out simply by how I’m presenting.

It’s silly to be so dependent, at least in thought, on this fictional character. I mean, House doesn’t exist. This can’t ever happen… right?

Well… On Monday, I bought myself a whiteboard and began listing what I could on there.

The differential diagnoses list has grown in size, thanks to pals across social media offering their thoughts and ideas. Together, we’ve even found some that fit better than those listed here.

It’s also culminated in an ‘asks’ list for me to take back to my healthcare team, from easy stuff like additional blood work to more rigorous tests to even a full spinal MRI and spinal tap. I really would like it to not get to the spinal tap level.

This pain and weirdness is already at 11, know what I mean?

Do you have thoughts on what this could be? Here are some things I ask you to keep in mind:

These symptoms have been off and on since 2012, happening maybe three hours here (when overheated) and two hours there but not consistently like it happens at present. This rules out some things like guillain-barré syndrome that would’ve had me kick the bucket in five years’ time.

I have a familial history of autoimmune and autoinflammatory diseases.

My genetic makeup (courtesy of 23andme because of familiar record issues) is heavily European:

58.1% British Isles (British, Scotish, Irish, Welsh)
10% Scandanavian
6.5% French and German
23.8% Broadly Northwestern European
1.4% Broadly European
0.01% North African and Middle Eastern

I do not have Ashkenazi heritage which rules out a number of conditions.

There may be symptoms I am having that are not listed on the board as they overlap with other conditions I am currently diagnosed with (fibromyalgia, systemic JIA, etc). This is not a complete picture of my health.