Category: health adventure

Help Me, House – You’re My Only Hope

Posted on 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.

 

Diagnosis: Nothing

Posted on by Grayson
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

Posted on by Grayson
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.

 

Now We Play the Waiting Game

Posted on by Grayson
I had acupuncture bright and early at 8:30 this morning. I had to bring up the symptoms I’ve been having lately. My pain rehab doctor said he thinks this sounds nerve-related and we got to the needles in my back bit.
After stopping and getting labs done for my rheumatologist, I called her office and left a message to have someone call me back. I rely heavily on my rheumy because, as great as my primary care doc is, she is extremely busy and can’t usually see me on an emergency basis like my rheumy can.
When her nurse called back, I explained what’s going on. She practiced great reflective listening and said she was concerned about my cervical spine.
I am, too.
I then explained my familial history of MS and she knew exactly where my mind was going.
Neither of us were happy. She said she’d talk with the rheumy and call me back. The nearly-four-hour wait was really hard to sit through – so much so that I slept for part of it. The nurse actually woke me up when she called, but I was more than happy for that.
“Let’s start with X-rays.”
I popped to the clinic near my apartment and got the highest number of X-rays done on my neck that I’ve ever had.
My biggest wish right now is that the X-rays show something, some hint of something at least. I don’t want this to be an issue of my disease affecting my neck, but I’ll take that over MS because of my history of watching that take a life before the breakthroughs made in the last twenty years.
Now we play the waiting game.
 
This is an update kinda to the last post.

 

I Spent Rare Disease Day on the Couch

Posted on by Grayson
I had to sleep on the couch last night. I’ve spent 99% of my day on the couch, too.
I hate doing that.
My pain the last few days has been higher than I’ve wanted to admit, even to myself. Today, this pain sits in my left knee and hip. I wanted to run errands and clean and do enough today that our apartment wouldn’t feel so cluttered.
On Sunday, some of my newer or more newly-worrying symptoms returned.
Since the summer of 2012, I’ve had a symptom off and on that I never was really concerned about until now. It’s what I describe as a whooshing of sleepiness down my arms from my neck. I say sleepiness as it’s not exactly numbness (though it’s similar) and I get very tired when this happens.
The first time I can remember this happening was at a museum. Hubs and I were walking around looking at collections and I got overheated, very lightheaded, and had this arm-whooshing.
I nearly passed out.
Understandably, I decided it was probably a fibromyalgia thing — something I would be diagnosed with a few months later after breaking down in front of a previous rheumatologist’s nurse practitioner. I knew I had either fibro or multiple sclerosis. The latter led to my great grandmother’s death and I just couldn’t handle the not-knowing.
Between the arm-whooshing recently growing in intensity and newer symptoms — intense leg twitching, slight slurring of speech, etc — I’m not sure that MS is off the table.
The allodynia and other symptoms I have of fibro are things I always believed to be fibro-specific… but I recently learned they overlap more with MS than I ever knew.
I’m honestly very scared and devastated — scared because I know that I might have MS and devastated that my great grandma lived with so much of what I’m dealing with on a day-to-day basis.
She was always so supportive of my and my health issues. When I first got sick at age five, she was the most supportive person in my life. She tried to make me less afraid of the possibilities that systemic juvenile arthritis can bring, like wheelchair and scooter use. She relied on her scooter and tried to make it fun, racing it around our backyard. That part didn’t exactly stick for me, because I knew she hated being confined to it, but that’s okay. I was always around to help get things out of cabinets so we could cook together (as long as she let me stand on the counter tops).
I take so much of my personality from her, the good and the not-so-good. She was blunt, even to us kiddos, but always made sure that we knew we were so very much loved by her.
It isn’t the end of the world if I wind up having the same thing as her. I’m just scared because I watched it take her body and then her voice and mind. That gradual wasting away is what scares me… even though I know that medications and other treatments have come a long, long way since she passed in 1999.
Hubs and I have discussed it and we would handle this like any other diagnosis: taking it one day at a time.
Still, I’m scared.
Thursday morning, bright and early, I see my pain rehab doc. I have to tell him about this and see what else we can do, see how he and the rheumy want to evaluate these symptoms.
I’ll do labs and see if my inflammation levels are down at all, since they were high in January.
And I’ll wake up on Friday ready to head to Minneapolis for the weekend, hug some of my favorite people, eat some amazingly delicious Parkway Pizza, and watch some collegiate women’s hockey.
This post originally appeared on Medium. You can read an update in the next post.

 

Acupuncture saved my life

Posted on by Grayson
In the last half of 2016, I began seeing a pain rehabilitation doctor I was referred to by my rheumatologist. My neck has been just god awful for me lately.
For a long time, I hadn’t been sleeping in my bed but on the couch. Even then, I was barely sleeping.
We started with trigger point injections. This is where lidocaine (a numbing agent) is injected directly into very tight muscular points. It relieves the tightness and allows you to move in ways that will help work that knot out. These were really effective at the start, but began to very quickly lose effectiveness past the first few days.
Our plan b was to start acupuncture and see how that went. It isn’t covered by our insurance and y’all know how I feel about ‘alternative’ medicine things, but I was willing to give it a try.
 
I can honestly say right now that I don’t know if I would be alive without acupuncture.
People may think I’m being melodramatic in saying this but, for me, it’s a reality. I can deal with pain in a joint on a normal basis – heck, I lived and worked with bursitis for several months. This neck pain is something that is just demoralizing and awful in the worst way.
I can avoid using a joint like my knee but not my neck!
We’ve only done the acupuncture a few times, but this last time I went for three weeks until having real neck pain again this past Wednesday. And, when I say this, I mean little-to-no breakthrough pain to manage as well – no TENS unit, hot packs, ice, ointments (aside from those to ease my sunburn), etc.
This is practically a miracle for me.
I’ve been able to sleep! And in my bed next to my husband at that! Tuesday night was the first night since I got back from Mexico that I didn’t sleep in my bed once my sunburn cleared up enough.
All that said, this has been also a practice in self-care. For example, I can’t be upright all day. It’s just not something I can do and survive. That’s actually been part of what’s wound up causing me more pain this week.
The amount of time I’ve spent upright the last two days, though, has been productive and amazing. In addition to publicly speaking out again sexism and sexual harassment that pervades our patient communities, I’ve also been working on some great things for Chronic Sex and related projects. I won’t talk too much about it here, but it’ll advance a lot of research and information on sex/intimacy and illness/pain/disability.
I get acupuncture next week Thursday and I couldn’t be more excited.

 

2016 in Review

Posted on by Grayson
This year has been hella weird. I’ve gotten to grow and move on with some big projects, trying new things, traveling, and more… but also Cheeto Voldemort….
(source)
I can’t.
I’ve been pretty absent here lately. Part of it is how much attention Chronic Sex (and self-care) needs, but a lot of it is that I’m spending a lot of time doing emotional work with people really affected by the election. Some of us potentially stand to lose our lives because of our incoming walking contradiction of a president-elect. I’ve been in contact with people nearly non-stop since November 8th, and that’s really hard.
 
We are scared, exhausted, nauseated.
 
We don’t have the ability to give someone a chance when we are literally fighting for our lives.
The lack of compassion, empathy, and inclusivity/intersectionality within groups fighting DT is incredibly disturbing and adding another layer onto the fight. Many of us are having to fight to even be recognized as members of the fight against DT.
Our checks and balances can’t do much when everything is controlled by one party, and that scares the shit out of me… so, for now, we keep organizing. We keep checking in on each other and providing emotional safe havens.
We don’t have another choice.
Anyway… At the beginning of the year, I learned how to swim (kinda). I wasn’t able to keep up with the classes because of how it was affecting my health. Still, I felt really cool about being able to finally conquer that fun thing…ish.
I intertwined my Trekkie nature with my PTSD, sharing initial feels about how Seven of Nine is treated for PTSD earlier in the year and final feels recently. I had some weird feels about how I’ve personified ‘Arthur’ (my arthritis fun) in the past – and how that has changed, too.
I got to head to New York writing for a conference and, while there, got to meet some great people I’m happy to call pals. I have been lucky enough to head back to the big apple twice this year, once just for funsies with family… and I basically never stopped talking about Hamilton… but then got to see it on my second NYC trip!
I got to attend some great conferences – ePharma, HealtheVoices, Self Care Mvmt in Toronto, both Juvenile Arthritis Conferences, Women in Pain, Stanford MedX, Joint Decisions Empowerment Summit, and more. I’ve traveled all over lately and I am loving it.
I even got to spend time with one of my favorite humans, Kate McCombs, in Portland running some of her amazing Tea & Empathy workshops. The Arthritis Foundation chose me as the adult honoree for the Walk to Cure Arthritis in May, too.
Meeting some great people has definitely been a part of my list this year, too, from David Tennant and Alex Kingston to Vice President Joe Biden to Kate McCombs to Karen Duffy and more.
My blog over on Creaky Joints (which has been a little neglected lately) was voted one of the ’10 Arthritis Blogs We Can’t Stop Reading’ by Everyday Health! I’ve been featured several places this year, too – Kids Get Arthritis, Too, Kinkly, BlogHer, and more.
Chronic Sex is up and running with a podcast, chats, affiliates, and more. I’ve been getting some international attention for that and it’s really surreal. A few weeks ago, Kate and I went and heard Dan Savage and some colleagues talk. Instead of feeling unworthy, I felt like I belonged. These people knew who I was and the work I was doing and were excited to meet me.
It was hella weird and validating at the same time.
Some of my favorite products ever got tested by me like healing CBD lotion, Axon Optics migraine glasses, and the Oska Pulse. I also wrote my first e-book on self-love with chronic illness fun.
Our family went through some loss this year – Aunt B and Oreo. Because of Aunt B and her graciousness, we had enough money for me to leave my day job and really focus on what I want to do with my life. Because of leaving my job, I was able to focus on spending time and loving every second of every single day with our boys – especially Oreo.
It’s not like my relationship with T has ever sucked, but we’ve definitely both made strides this year to connect in new and different ways. A lot of this has to do with me learning to let him in a little better, but also ironically with my journey to being a sex educator. I find that we’re both more open to questions and not as hurt by answers. Consent-based communication rocks.
New adventures await me in 2017, from conferences to friend vacations to hard work and more. I only hope we can all make it to this time next year unscathed.

 

“No signs of active SJIA”

Posted on by Grayson
On Wednesday, T had some doctor’s appointments to get out of the way.
I got some labs there as well since we were there.
Today, my rheumy sent back my lab results via my Electronic Medical Record.
“I have no signs of active SJIA.”
What the fuck does that even mean? My sed rate is creeping higher, but perhaps that’s okay since it’s still within normal parameters.
I don’t understand. I’ve been dealing with some pretty intense pain. Is that just fibromyalgia? Is there something else going on?
Is my SJIA in remission? How do I handle this?
I have no idea.
I see my rheumy this Friday and will hopefully have some answers then. Until then, my mind will be racing.
Hooray.

 

Lifestyle changes & Chef Mullen

Posted on by Grayson
In the past, I’ve been pretty grumpy when it comes to certain lifestyle changes that people try to prescribe for those of us who are chronically ill. We get a lot of well-meaning suggestions that end up making us feel like others don’t understand.
We’ve often already looked into changes you’ve suggested and they either didn’t work or won’t fit with our lives.
It stinks butts.
I want to clear things up, though – I am 110% pro-lifestyle changes as long as they work for you and you’re being safe about them.
I’ve talked a little bit about how I follow a gluten-free diet for many reasons. It doesn’t cure anything but it does help me a lot with pain and intestinal issues. I hope to speak more about this in the coming year.
Doing an elimination diet truly helped me get in touch with the foods that my body cannot handle. My body hates gluten and can only handle milk from certain local places it seems. Dairy, in general, should really be a no-no for me… but when you crave nacho cheese and jalapenos, the fake stuff just won’t do. I’ve also noticed that my body doesn’t enjoy many sodas, save colas featured in a red can or root beer featured in a grey can.
I’m not the only one who sees changes with food and exercise. There are people who can control their illnesses with these kinds of changes alone even, like Chef Seamus Mullen:

I cut sugar, dairy and grains out of my diet and focused on a largely plant based diet supplementing grass fed meat and wild seafood. When it came to booze, I didn’t drink for 2 years (but have since added a little wine from time to time).

Within a year I was off ALL of my medications and there were no longer any signs of RA or any other autoimmune disease in my blood, something I never would have expected a year earlier. As I continued on my journey, my body changed shape; I lost weight, became more flexible, and rediscovered my inner athlete.

I started cycling competitively, riding an average of 150 miles a week, and I started practicing yoga.

Courtesy of Amazon
You should definitely pick up this cookbook. Any diet that says it’s cool to eat chorizo you pan fry with Brussels Sprouts is cool with me!
My concerns have been with people trying to “be healthier” and not necessarily keeping their doctor apprised of everything. Vitamins can have side effects AND counteract or interact with medications. It’s incredibly important to work with any medical professional you see about any and ALL changes you are eager to make regarding lifestyle and eating habits.

 

A holy cow of a rheumy update

Posted on by Grayson
I saw my rheumatologist on Friday morning.
Last week, I cried in my office. In the year I’ve been seeing my rheumy, this is what my sed rate has done:
My doc sent me this note along with the lab results: “SO impressive to see from 8 months ago how wonderful your labs are now.”
And she hasn’t even seen it from the beginning…
From Fri at 8:45 am –

I’m about to leave work to backtrack towards my house and head to my appointment. I’m nervous, especially as I realized yesterday I’m in my first fibro flare where Arthur has not joined in.

It’s weird.

We agreed that I’m in a fibro flare… and that I should stop swim class.
It’s too much right now.
BUT everything else is SO AMAZING!
I showed my doc the graph above and she was just astonished. I don’t know what all is factoring into me feeling so well, but we both agreed that this is something that was SO needed.
No mention of the R-word yet – I don’t think either of us want to go there too soon.
Now I can get to truly helping others the best that I can.