Category: health adventure

Another Week, Another Set of Diagnoses

Posted on by Grayson

Last Thursday, I found out I have a tumor in my left knee. If I’m honest, I’m pretty upset still that my rheumatologist didn’t tell me. That’s not something that anyone should find out from x-ray notes.

The whole reason I had gone digging was to find out why a referral hadn’t gone through. It was listed on my visit details that day, but I never got a call. After six weeks of waiting, I managed to corral my doc into putting the referral in correctly. I’ve learned I have to do that with her lately, and it’s frustrating.

Luckily, with freezpocalypse upon my state, I was able to miraculously get in to the pain management physiatrist to evaluate my knee pain. Turns out, I’ve got a few new diagnoses to add to the list.

Again.

Generalized Hypermobility Spectrum Disorder

Basically, this means I’m stretchy, but not quite into Ehlers-Danlos Syndrome (EDS) territory. You can check out the handout my doc gave me here.

I’m going through PT again. This time, though, I’m working with a hypermobile aware therapist. I think it’ll make all the difference – even though I love my old PT, too. She also runs a tai chi class specifically for hypermobile patients that I’ll be joining.

I’m adding new items to my repertoire, too, to help stabilize joints.

Iliotibial band syndrome of both sides

This causes knee pain with certain movements. That pain is generally located on the side of the knee whereas something like patellofemoral arthralgia – which I also have – causes pain in the kneecap.

A lot of the issues this causes will be addressed in PT. Some custom orthotic shoe inserts will help, too.

Suspected Postural Orthostatic Tachycardia Syndrome (POTS)

One of the things that often goes along with Mast Cell Activation Syndrome (MCAS) and being stretchy is POTS. It’s a circulatory disorder that presents symptoms when someone changes positions. Standing up from any position can bring it on especially hard.

Compression stockings are supposed to help a lot with this, so I’m on the lookout. There’s a lot that I have to buy now. If you want to help, here’s my Amazon list.

I’m glad that these things that I suspected were taken seriously finally. It’s wild to me that I actually know what I’m talking about with my body. It shouldn’t be, but that’s probably how it is for a lot of us.

On top of it all, I’m muggle sick right now. I swear, I sound like Bobby Brady as his voice changes… but maybe that’s because I’m just thinking about the many upcoming changes I have to start making.

Why I Always Read My Procedure Notes

Why I Always Read My Procedure Notes

Posted on by Grayson

Yesterday I found out that I have what is called a bone island in my left knee.

This is usually just a benign tumor in the knee. For me, it’s located where the top of my knee meets the bottom – the lateral condyle.

It explains part of my pain. After all, my left knee is by far my worst joint. I think it always has been. However, it gave me a major anxiety attack yesterday because I found this reading notes in MyChart as opposed to being told… But also because these can be the beginnings of cancer.

And I didn’t need to learn that from a laptop screen.

Narrative **THIS IS A SIGNED REPORT** XR KNEE MIN 4 VIEWS 12/7/2018 INDICATION: patietn with hypermobility and soJIA please evaluate knee pain patietn with hypermobility and soJIA please evaluate knee pain COMPARISON: October 9, 2015 TECHNIQUE: Frontal, lateral, Rosenberg and sunrise views of the left knee. FINDINGS: There is a bone island in the lateral femoral condyle. No fracture or osseous lesion is evident. Joint alignment is normal. Joint spaces are well-maintained. No joint effusion is seen. Soft tissues are unremarkable.

Naturally, my anxiety spiked way the fuck up. I’m still fatigued from that anxiety attack. I’m exhausted and nervous. Chances are that it’ll stay benign, but that’s not easy to tell myself when I’m so often the zebra in a room full of horses.

When I had my spine MRIs, I learned that I had a bulging lumbar disc. While not uncommon, it also changes how I handle things. It explained a lot about my back – the pain, spasms, etc.

Knowing also means I take it easier on my back. I’m not as mean to it as I might otherwise be.

These bits of information in our procedural notes often go untold and unexplained. We may never figure this out without checking ourselves or having another provider read those notes.

This brings me to a number of questions:

What if I didn’t have access to these notes? Or if I didn’t have the health literacy to navigate them?

And what about shared decision making? I can’t fully participate if I don’t fully know what’s going on. As a sex educator, I know that informed consent can’t be given if you’re not informed. Providers have to hold up their end of that bargain, whether it’s my rheumy or the radiologist.

How many of us are walking around dealing with unnecessary pain and more that might be listed in our medical files that we don’t know about?

If you can get access to them, always get and read the notes from the procedures you go through.

My Liver Is Happy Again – And Other Updates

Posted on by Grayson

It’s been a few months since I wrote some updates… or much at all on here.

Gussy snuggling under my teal comforter while we watch the Bucks in the background

I’ve been focused on taking care of one of my guinea pigs, Gussy. Since the week of Halloween, he’s been struggling with health issues. After trying a number of things, we discovered he had an abscess. He’s getting medicine twice a day as well as a lot of cleaning (thanks, diarrhea) and love.

You drop everything when a loved one is basically in the ICU, especially if you’re the one providing care. I’m finally getting back to taking better care of myself.

Liver, Nortriptyline, and Migraines – Oh, my!

Back at the end of October, I had to come off of my nortriptyline for a gastric emptying study. Since being off of that, my liver values have normalized. It proved to me that, 1) that med was sending my liver over the top, and, 2) it wasn’t doing anything for my migraines.

I’ve been able to control my migraines more by controlling my MCAS symptoms and triggers. That, and PT for my neck, anyway.

My heart rate has gone done since coming off nortriptyline, too.

MCAS

I certainly have been slacking on some of my MCAS stuff. The good news is that I have a lot of people reminding me to handle it.

My sensitivity to scents is a lot stronger than I really realized before. Things like deoderant are doing me in. I am, at least, being able to handle the reactions after the fact… for the most part.

GI

My gastic emptying study was a long day. Four hours of dicking around in the hospital after eating radioactive breakfast.

They found I have a borderline delay in gastric emptying. That means that I don’t have full-on gastroparesis, but I also don’t not have it.

Part of what I have to do now is work towards finding easily digestable foods within the low FODMAP label.

The other thing I have to consider is that my cholesterol is a little high.

Dental

Now that a new year is starting, I’ve got new dental insurance to – hopefully – address some more of the dental issues I’ve been dealing with.

Now if everything could start costing less…

And Now, My Liver

Posted on by Grayson

A few things have happened since my last health update, so I figured a new update was due.

Swallowing

While I know my rheumy put in a referral for speech pathology to help with my esophageal dysmotility, I’ve not been contacted yet. I’m sure that my swallowing issues are towards the end of their priority list, and that’s fine.

In the meantime, I’ve been relying heavily on plastic straws. The other options just do not work for me. That’s especially true when my dishwasher keeps running into rust problems. I don’t trust it to clean any kind of straw, and I don’t have the hand dexterity lately to wash them by hand. It’s an important part of why plastic straws exist – and why they shouldn’t be banned.

People who can drink without straws should, but don’t ban them. You’re losing any potential business from a wide variety of people.

GI

I’ve been keeping to my low FODMAP diet… for the most part.

Because of that, I’ve been able to recognize some other things that exacerbate my IBS. While I might not necessarily cut things like coffee completely out of my diet, I also know to expect – and prepare for – the end result. If I know I need coffee, I can premedicate with an anti-diarrheal, too, to help limit the intensity.

My follow-up is in October. I’ll likely go through with the gastroparesis study. Now that I’m not dealing with exacerbated IBS every single day, I am noticing how long it takes my body to process things… and it’s still too long.

Cardiology

My Holter monitor came back fine.

I’m floored, honestly. I have no idea how that was the case, but I also know a lot of heart issues can’t be found with that monitor. My rheumy has offered to pass me along to cardiology for a full workup.

I should take her up on it. I know I should. For some reason, though, I’m just pushing it off because, honestly, it scares the shit out of me.

Migraine

Since changing from estrogen-filled birth control pills to an IUD, my migraines has drastically decreased.

Over the last 20 days, I’ve only had 3 migraine-related issues. Two of those were full-on migraines while the other one was medicating early to stop a migraine.

MCAS

I’ve finally got a good medication routine down that stops most of the reactions I was having. Thanks to fellow MCAS patients, I’ve been able to figure out many of the things I react to. Sadly, that means limiting more dyes than I would’ve liked.

At the same time, can I live without wildberry skittles? Yes, yes I can.

Trigger Point Injections

I’ve been getting these for a while now.

I was terrified when I started, but they’ve really helped. As odd as it is to say, I’ve grown to appreciate needles in my head, neck, shoulders, and back.

I had a round of these last week and we did our fewest number of injections yet! It only took four shots to give me relief.

That’s incredibly amazing.

Because of that, we’ve been able to push off the next set from every four weeks to every six weeks… which means I get another round on Halloween!

*imagine spooky noises here*

And Now, My Liver

I stopped by the lab and got blood drawn after my injections last week. My CBC was great, but… my liver didn’t look good.

My AST was 42, when the normal range is up to 36. My ALT? 59, well above the 0-33 normal range.

While we’re not sure why this has happened, the Zyrtec I’m using to take care of my MCAS – up to 40 mg/day – can cause ‘abnormal hepatic function.’ So can my Nortriptyline, which was upped to 30 mg in June. I’m trying to only use 30 mg of Zyrtec for now and avoid using Zantac (another histamine blocker) when possible because, surprise, it can do that, too.

Rheumy has ordered another run of these labs in a month.

Time to shoot her a message about med use and a cardiology referral.

Swallow Test and Mini-Health Update

Posted on by Grayson

At my rheumy appointment last week, I brought up a difficulty I’ve had with swallowing things for a while. Since my recent endoscopy didn’t find a cause, doc referred me to the hospital for a swallow test.

It was an interesting process. I had to drink a variety of liquids and a pudding laced with barium. One liquid was watery and another was the consistency of milk. The pudding was almost like marshmallow fluff. At one point, I had to eat a GF cracker folded into the fluff. I also had to swallow a barium-laced sort of alka seltzer as well as a barium tablet.

The most wildpart of this test was that they had me sit and then stand against a table – and then had me stay leaned against the table as they moved it from a vertical to horizontal position and back again! It was an absolutely wild ride, but one the tech, speech pathologist, and doc prepared me for.

Throughout all of this, obviously, an imaging system was recording how my body handled these materials while sitting, standing, and laying down. We also went from light sips to several gulps in a row for added variety.

I got the results back from that today and, surprise, after a few weeks of tests showing normal things throughout my body, this one came back abnormal! I don’t want to celebrate that but, at the same time, it feels incredibly validating since other things haven’t been found.

So, what’s wrong? I have what is called esophageal dysmotility. Essentially what that comes from is my esophagus doesn’t clear food in the normal two contractions. A third one has to happen, which means my body isn’t working as it should.

Because of that, I have a tendency to aspirate when larger amounts of fluids come into my mouth. It’s a big part of why I drink from a straw – I have to or I’ll choke. It’s not bad enough that I cough usually, but it often is.

I also have a tiny hiatal hernia. The hiatus is a small opening in the diaphragm that our food passes through to get into the stomach. For some reason, my stomach has decided to pop up into that hole. Since this can easily allow stomach acid, food, and drink back up into the throat, it’s likely a big part of why I have to stay sitting up for a while after eating unless I want my food to start coming back up. It can also play a role in shortness of breath and both chest and abdominal pain.

My rheumy has offered to give me a referral to speech pathology which also works on this fun stuff. I will be taking advantage of that for sure.

GI crud

I had a follow-up with my GI NP this week. The diagnosis that we’re running with is IBS. She’s given me a load of OTC options to consider.

I’ve already been keeping a low FODMAP diet recently. It means limiting a lot of things I enjoy eating but it’s also helped immensely. I have to avoid a lot on the list as is due to reactions I have to sugar alcohols, gluten, and more anyway.

She’s offered a referral to test for gastroparesis. To be frank, since that’s something I’ve always suspected as an issue, I may take her up on that. She doesn’t believe that it’ll yield a diagnosis at all – but she’s only seen me one other time, too.

Heart crud

In heart-related news, my echocardiogram from earlier this week came back normal – save, of course, for the tachycardia. I turned in the Holter monitor – which I had to wear for two grueling days – on Thursday. That will take a few days to read and pass results onto my rheumy, who will then pass results my way.

I’m not out of the woods here, by any means. Having a pulse of 139 at the GI follow-up isn’t a great thing at all. I’m hoping, though, that moving forward with some of these things yields good long-term results.

My Scariest Rheumatologist Appointment Yet

Posted on by Grayson

My health issues have kind of exploded recently.

My colonoscopy and endoscopy showed nothing about what my GI tract is dealing with. The mental health crud I’ve been facing isn’t getting much better. And, now, something scary is happening.

At my initial digestive health appointment, the NP mentioned that my heart rate was pretty high. That combined with things like dizziness were setting off her red flags. As it’s not her specialty, she suggested I follow-up with primary care.

A few weeks later, I had my IUD recheck and brought this up. That NP didn’t think it was a big deal as I always tend to run higher, at least in that health system’s records. “Specialists worry more,” she said, “because they don’t deal with this regularly.”

I ran late to last week’s rheumatology appointment. I made the mistake of going to the wrong clinic because I didn’t check my calendar correctly. By the time I got across town, I was about 15 minutes late but they were fine with that.

The MA goes to get my vitals and the machine says my pulse is 130. And it’s not calming down. She decides to come back at the end to check it. During the appointment, though, doc became really concerned. My heart was still racing incredibly fast. When I brought up that the machine during my endo/colonoscopy yelled at us for tachycardia, doc shot me a look. Her demeanor changed as she asked questions… and promptly ordered an echocardiogram and Holter monitor.

By the time the MA came back in, my pulse was still high but had calmed. The bigger problem at that point, though, was that my heart began beating irregularly. Instead of that traditional bumbum bumbum, I was exhibiting bumbumbum bumbum.

The MA and I went through my meds list to see if there was anything that might be causing heart stuff. Nortriptyline can do that, and so can Lyrica. A friend just had to go off nortriptyline because it was making it look like they needed heart surgery. Since we just upped that to 30 mg each night, I could definitely see it being the culprit.

But I’ve also been sitting with some scary feelings about what if this isn’t the case. I can feel my heart racing and, if I’m honest, I thought it was my anxiety causing this. As I write this, feeling every racing and irregular beat, I’ve been sitting for over half an hour. There is no legitimate reason for my heart to be so upset.

It’s scary. I’m scared. I worry about what this could mean for my future. I shouldn’t be a thirty-year-old pondering mortality, but here I am. My MA and I worry about if this could also be due in part to biologics – which haven’t been researched enough to truly know their side effects… And that’s especially true with Anakinra/Kineret and adult patients.

So, tomorrow morning, I get to have a heart ultrasound. After my appointment, they’ll give me a Holter monitor to track my pulse for the next 48 hours. This week is a rough one already with appointments I have – I also see ENT for a swallowing test and have my GI follow-up on Thursday.

Of course, I’m still dealing with several undiagnosed issues right now, too, including what we think might be Mast Cell Activation Syndrome (MCAS). Of course, that can bring with it cardiovascular issues which could explain my heart stuff, too. The arrhythmia and tachycardia my rheumy’s office witnessed are both telltale signs, especially along with allergic and dermatologic reactions I keep having.

For now, I’m placing bets that my heart issues are caused by medication(s) or MCAS. If not, though, I don’t know what will happen. I just hope the actual worst is not as bad as my fears lead them to potentially be.

a photo of a person painted gold in the background with white text: "6 Things I Wish I'd Known About Endoscopy and Colonoscopy Prep"

6 Things I Wish I’d Known About Endoscopy and Colonoscopy Prep

Posted on by Grayson

A fewweeks ago, I had an endoscopy and colonoscopy. While the IV bruise is finally healed, I’m still wishing I’d known more going into the prep stage.

Hydration

The suggestion to chug Gatorade and water is more than a suggestion.

Buy wipes

Yes, butt wipes. I already use them but, if you don’t, get a travel pack. Your butt will thank you.

Skip the broth

Look, chicken broth was on the pre-approved okay-to-drink list. After one glass, I don’t think I’ll be able to have chicken broth again for a long time.

Invest in Jello

Do it. As soon as your procedure is scheduled. Don’t be that person making a last-minute Target run when you’ve not eaten in a day and you’re having chicken broth burps.

Don’t try to catch up on podcasts

You’re going to be incredibly tired after your procedure. Skip the podcasts you love and trade them in for a nap watching Bob’s Burgers. If you’re like me, you’ve seen every episode anyway.

Take a deep breath

Just because you’re having a medical procedure doesn’t make it scary. More often than not, it’s just to rule out big stuff – and it won’t find anything.

New Potential Diagnoses, New Medications, and More Tests

Posted on by Grayson

The last few weeks have been incredibly hectic. I will say, though, that’s hectic in a good way. After putting up with issues for a while, I’m finally getting them addressed.

photo inside a GI exam room with tan exam table and white pillow against a blue and tan wall

I feel like I’ve already perfected the art of spending time in exam rooms.

Neuro

My migraines have been getting worse again. Unfortunately, our insurance doesn’t want to cover much of my Maxalt. They only want to cover three fills in sixty days. That’s 27-36 pills. When I have to take two to kill a migraine, that’s not enough. It means that, instead of being able to take these pills and move on with my day, I’m still having to try to treat my migraines with other things.

It just doesn’t work.

My neurologist has upped my nortriptyline to three pills at bedtime instead of two. I’m really hoping that it helps. For now, it’s helping me sleep through the night more. I’ll take that!

MCAS

I finally got a response from my allergist/immunologist office. The pee tests I did for MCAS were mostly within normal limits, though one showed higher mast cell activity than the others. Since I’m still having what we think are MCAS symptoms, though, they prescribed me montelukast or Singulair. What it does is block leukotriene D4 from hitting leukotriene receptors. This is especially helpful in the lungs, but also helpful throughout the body.

After a few nights of this, I’m already seeing benefits. The biggest one is that my rashes are not showing up! My face, chest, and arms have been normal looking for a few days. I’m absolutely floored and thrilled.

It does make me wonder if my rashes lately have been more due to MCAS than SJIA. Notably, I haven’t had much of my odd undiagnosed symptoms the last few days, either.

K's hand with three green and white capsules (nortriptyline), one pink pill (etodolac), one white capsule with black writing (Lyrica), and one pink square pill (Montelukast)

Birth control

I opted to get an IUD in order to get off my birth control pill. The extra estrogen could be increasing the frequency of my migraines.

That got put in on Tuesday. The process was incredibly painful and I almost passed out and/or threw up. I’m still kind of processing it but, to be honest, it was traumatic. The strings have, at least, stopped poking my insides.

GI

I also had a GI consult on Thursday. It was a really thorough visit and the NP I saw was incredibly understanding. I was migraining while there and she was very patient with me having a hard time with some words.

After talking more about my history and some of the things going on, she is concerned that I may have a type of IBD instead of IBS. Things like waking up at night to poop and rarely being hungry or only eating three bites of something to feel full are apparently not normal for something like IBS. In order to rule IBD – or another digestive issue – out, there are a few tests we have to run. Next week, I get to collect my poop and bring it to them for testing.

At the end of the month, I’ll have an endoscopy and colonoscopy. It may be able to give us answers or, at the very least, it can rule out something more serious.

Unfortunately, we noticed that my heart rate has been faster for… a while now. Combine that with my lightheadedness and nausea, and the NP is concerned about my heart… which means yet another appointment I’ll have to make.

Funny enough, it’s that issue that I’m focused on… mostly because heart stuff could easily point more towards MCAS or something else. If I’m honest, that’s scary. I’ve spent several days recently contemplating mortality because that’s what I do best. It’s not been great for my mental health.

So many appointments

This has been a collection of a ton of appointments and calls. It means that I’ll have a ton of follow-ups coming up, too.

I’m tired. It’s exhausting to have to stay on top of busy providers, try to get test results, and wait for calls back. People don’t always understand how tiring it is. It’s definitely worse than having a full-time job. Hell, it is a full-time job.

Thankfully, today’s appointment is for our car. It’s nice to be on the caregiver side of things sometimes, even if it’s for an inanimate object.

Hopefully, getting my things addressed will lead to positive results. I just want to feel better physically, mentally, and emotionally.

drawing of a femme in the background with a pink text box and white text: " Migraine Relief is a Beautiful Thing " and " Not Standing Still's Disease "

Migraine Relief is a Beautiful Thing

Posted on 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!

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Promethease Can Get You More From Your 23andMe Data

Posted on 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?