yellow background with orange-ish text: "Tough Decisions Ahead" and white text: "Not Standing Still's Disease"

Tough Decisions Ahead

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

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

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

a photo of a one lane road in the middle of a body of water; white text at bottom middle "Latest MRI Results" and "Not Standing Still's Disease"
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

blue-ish pic of a window with raindrops on it and the moon is seen through it; white text: "Health Update: Yet Another MRI" middle and "Not Standing Still's Disease" bottom
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

'check yourself before you wreck yourself' in yellow; 'not standing still's disease' in white below that; set against a blue filter over a photo of my feet in black flip flops against a brown clinic floor
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

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

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.

 

Diagnosis: Nothing

I woke up way earlier than I have in a while to head in for an MRI this morning. It went pretty well and very quickly. I was told I should hear something by tomorrow.
But, surprise, my neurologist shot me a note just now! Unfortunately, the results really don’t help do anything but rule out some stuff.
Everything looks fine in my noggin and neck. I do have “prominent lymph nodes noted within the upper neck and submandibular regions” AKA the lymph nodes I’ve always had swollen for approximately 23 years. Of course, the left side is generally worse on a day-to-day basis in regards to the lymph nodes.
There are no lesions, hemorrhages, stenosis, or really anything.
Real talk? I’m glad this isn’t MS. I’ve talked about how that scares me just because of my experience with my great-grandma passing away from related complications. Yes, this was in 1999 and there have been great advancements since then, but it’s still a scary thought. I had kind of made peace with the fact that it might be and steps to take afterward and all of that.
The fact that I have no answers after all this testing kinda sucks.
At least I know that this neurologist is ready to stay by my side and figure out what’s going on. And, hey, maybe we can get my migraines under control, too.

 

The Quest for a Diagnosis

In one of my most recent posts, I brought up how I am fighting to get a diagnosis for what’s going on with me.
I had a consult with neurology on March 10th. We agreed, because of my already illness-ridden body and familial history of neurological disorders, that we needed to run a battery of tests. On my way out of the appointment, I stopped and we ran a ton of blood tests.
As of today, they’ve all come back normal with no abnormalities.
It’s relieving to know that I don’t have some of the issues we’ve tested for – myasthenia gravis or protein in my blood or any of that… but it also really sucks. I wish that things were a little different. As of right now, the idea of Multiple Sclerosis and my great grandmother keeps sitting in the back of my mind.
Again, I know things have come a long way and I have doctors that don’t and won’t dismiss my symptoms as hysterics. I know that I have a support system that will allow me to fight my hardest, including awesome people in my life with MS.
My MRI on the 21st is coming closer and closer.
I know it has the ability to show me what is going on – MS, Cancer, Chiari, etc. I’ve been focusing on the MS equation because of PTSD from watching Katie Mae deal with it, but also I think in part because I don’t necessarily want to think of other options.
you can buy these at www.katemccombs.com/teaandempathy/
I’m not letting myself feel my feelings as much as I should. If I do right now, frankly, the depression will get me. I’m in denial a bit but also simply can’t allow myself to go there. If I do, I won’t have the fight I need to get shit done.
It’s not easy to get used to what’s going on right now.
Within three hours of waking up, my arms start to lose feeling. My legs are doing it now as well. Everything is still sensitive to a point but numb in a sedated, not pins and needles, way. My fingers, though – the fingertips – are the only things that seem to truly feel when this happens. Well, and just above my elbows on the back of my arms. My toes aside from the big ones are consistently non-feeling on each foot.
Even my throat is getting in on this numbing action. I feel most of the time like I need to yawn or throw up.
When my neck isn’t ‘numb’ it’s hurting.
Nothing I seem to do makes things better or worse. The way I see it, I can either do things and get slightly worsened symptoms or not do anything and still deal with the same stuff.
In the meantime, I’ll keep hoping this MRI holds the key to what’s been going on.
If it doesn’t, I know that I can keep working with this incredibly amazing neurologist to figure out what’s going on.