6 Word Stories Pt. 28

If I’ve done nothing else this week, at least I’ll have put together this post. I’m still very tired- POTS is kicking my ass, as a few of the Stories imply. I’m trying to keep on schedule with friend and church and this blog, but I seem to be having poor luck. I miss my routine, but I can’t keep up with it right now, so I’m going to celebrate small victories like this!

Happy news, I registered for classes to pursue a Bachelor’s Degree. I’ve been out of school for more than 5 years, so I’m a little nervous, but very excited!

So here they are, 7 6 Word Stories:

  • Watched a season in one day.
  • I started today with negative spoons.
  • That feeling after finishing a project.
  • Running water never fails to soothe.
  • I’d rather hide than make decisions
  • I’m only tired when it’s inconvenient
  • My chronic illness is chronically exhausting

Hope you all have a nice weekend, St. Louis weather says it’ll either snow, or be in the seventies, so wish us luck.

4 Reasons There’s No Post Today

I’ve been having a tough week, health wise (see Monday’s missing post as an example), but I figured I could leave you with a short bit of dark humor

1. I think my head might explode: I have the headache from hell, and since it’s in my neck too, I’m having a hard times convincing my anxiety that it’s not meningitis. Also, my cat Spike is a mother hen when I don’t feel good. It’s sweet, except that he’s 18 pounds and he insists on constantly touching my face.

2. I keep falling asleep: And not just in appropriate ways like when I’m laying down. Sitting up is fair game too. You know the warning they put on NyQuil about not operating heavy machinery? I need that on me.

3. The world is spinning: Since I started physical therapy a few weeks ago, my POTS has been in a consistent flare. It’s depressing that 7 minutes of laying down exercise can affect me this badly. I’m eating tons of salt, like the experts recommend, but my I can’t really feel my face anymore…

4. My hands are shaking: Another POTS symptom, it’s because my blood sugar is all over the place. My body goes into full on trembling shaky sweaty rebellion if I don’t eat exactly every 3 hours. I never thought my pancreas could hold me hostage, but here we are. Who knows, maybe next week my spleen will demand $10000 in unmarked bills.

Thanks for stopping by, and I hope your bodies feel better than mine.

Hope

I’m back in Physical Therapy!

This is exciting, folks, because after a few more weeks of hip strengthening, I get to move on to the good stuff: Exercise Therapy!

As I think I’ve mentioned before, I have a neurological condition, a type of Dysautonomia call Postural Orthostatic Tachycardia Syndrome. I challenge you to say that three times fast. It’s impossible, which is why we tend to refer to it as POTS.

It’s a problem with my Autonomic Nervous System, which causes body functions like heart rate, digestion, and blood pressure to function incorrectly. My biggest issue is that my body doesn’t pump blood efficiently, and often times I end up with too much blood pooling in my legs and feet, and not enough blood in my heart and brain.

Do you know what happens when there’s not enough blood in your brain?

You faint. And in the case of people like me who have POTS, you faint a lot. I have trouble stand or walking for any period of time, because my heart rate skyrockets, I get incredibly dizzy, and if I don’t find a place to sit fast, you guessed it, I’m on the floor.

So what does this have to do with Physical Therapy?

Regular exercise is one of the best things for POTS, but it’s problematic because exercise raises your heart rate, and raises your fainting risk, and no one wants you to faint on a treadmill.

I’ve tried to start exercising on my own before, with little success, which is why I’m so excited to start the Levine Exercise Protocol with my physical therapist.

The idea of it fills me with hope.

I’ve been severely disabled by POTS for years now, and if exercise therapy can get me healthier and keep me stable, there’s so many things that I can do!

I was an active person. I was a running-jumping-climbing trees sort of kid, and as an adult, there have been so many things that I want to do- so many things that I want to try- if only POTS wasn’t holding me back.

Jess and I have been making a list, which includes but is not limited to: hiking, rock climbing, curling, ice skating, disk golf, longboarding, and gardening.

I’ve been vibrating with excitement. The whole idea of exercising freaks me out though, because raising my heart rate is so uncomfortable. But the idea of all the things that I could do is starting to smother that anxiety.

I’ve made a good life for myself that matches my abilities. I knit, I play board games, I read. And for the most part I’m satisfied with all of these, although being so sedentary makes me sad sometimes. On nice days I so wish that I could be out in the sunshine, doing more than just sitting.

And now that there’s a light at the end of the tunnel, I’m letting myself hope. It won’t fix me, but even raising my physical abilities slightly opens so many doors.

I know from experience that this is going to be hard. I’m going to be utterly miserable in the beginning, and I won’t want to continue, which is partially why I’m putting my feelings out there for the whole internet to see. Hopefully coming back here and seeing my optimistic rantings can blast through the sucky parts so I can remember how excited past me was.

So. To crabby, exhausted, future me: remember the future that we want, and most importantly, have hope!

Adventures in Surgery

Waking up from surgery is weird.

Everything around you is beeping, you’re groggy, and if you wear contacts like me, you’re totally blind.

As you’re trying to figure out what hurts where, the doctor comes in to talk to you, and you’re trying as hard as you can focus, because surgery is unpredictable, and last time you had a post-surgery doctor talk, you found out that you unexpectedly lost an appendix.

Collateral damage, they called it.

As I sat there, waiting, I realized that I was expecting the worst. Which makes sense when you go into a procedure not sure what you’re going to find. This time, the worst case scenario would have been that the surgeon found nothing visibly wrong, and decided to do a nerve graft in hopes that it would give me some relief.

Nerve graft is a very neat and polite word for a violent procedure. It involves severing a nerve, burying the ends into the surrounding muscle fibers, and slapping some cadaver tissue on top so the nerves can’t re-grow.

This is what I was expecting when I woke up.

And I realize that this makes sense. As a person with chronic health issues, I’m programmed for everything to be difficult. To have to fight tooth and nails for answers that don’t exist. My medical experience is trying new things in hopes that they do something. Anything.

Nothing is ever straightforward. You’re experiencing X because of Y, and Z is what we’re going to do to fix it. No. This doesn’t happen. That’s not what it means to be a spoonie*.

In medical school, young doctors learn a saying ‘When you hear hoof beats, think horses, not zebras’. It teaches them that 99.9% of the time, the most obvious and straightforward answer is the right one. The majority of people are horses.

I am a zebra.

So as I sat, as a zebra, in my hospital bed, I braced myself for the worst. Grey answers, no answers, only a guess to why I had been in pain for almost 9 months. No guarantee that any amount of surgery would every relieve my pain.

The surgeon started talking and oh man, was I surprised. There was a straightforward answer for my pain: a major sensory nerve was being compressed by a large tendon. There was an easy fix: they manipulated the nerve and got it out from under the tendon. Result: total pain relief (once the awkwardly placed incision healed).

Blew. My. Mind.

I didn’t realize how good it feels to have an answer. I can’t explain the feelings of validation when a doctor says “Yes, there was a good reason for your pain, there wasn’t much that you could do to manage it, and you did everything right.” I think vindicated might be an appropriate word.

My pain is vindicated.

I am vindicated.

And I am on the road to a full recovery.

*a word for someone who lives with chronic illness. See Spoon Theory 

For the Neurodivergent version, see reticulating splines

 

 

6 Word Stories pt. 24

Hello Friends! I’m here to apologize ahead of time for next week’s 6 word content. I’m having (minor) surgery on Tuesday, and that’s likely will be all I want to talk about.

This week however! I’ve been wobbling between being very productive, and very anxious about not being productive. And being anxious about what my productivity will bring. So basically, I’m damned if I do, and I’m damned it I don’t.  Let’s just say I’m contemplating big changes, and all of the options freak me out.

  • Is ‘life goes on’ a threat?
  • Changing my routine is so unnerving.
  • Hats with ears make people smile!
  • I disguise my need for help.
  • I hate peeing every 20 minutes
  • No matter what happens I panic
  • Good days are dog petting days

I think some of these 6 word stories are kind of downers, so I’m here to let you know that a therapy dog came by the infusion center this week and I got in lots of pets- and he licked my nose! So my week wasn’t all bad.

Until next week!

 

Meltdown Embarrassment

Oh man, what a day.

Any day that includes a meltdown is tiring, but rarely am I as embarrassed as I am about the one I had today.

For some reason, sensory related meltdowns seem acceptable to me. My senses are being bombarded, I’m overwhelmed, and often in pain, so I find it completely understandable that my brain reacts so intensely.

This was not a sensory meltdown. Today I had my first IV saline infusion, and I’m kicking myself for not being able to predict what happened. I had to wake up early (strike one), I had to navigate a large medical complex (strike two), and I was going into a brand new situation (strike three).

I really thought that I had a handle on it though. I knew what was supposed to happen, and had been mentally practicing what was going to happen.

This is where everything went wrong.

First, they were running late, and I had to sit in the waiting room for more than half an hour. Secondly, the first nurse to check my chest port thought it was warm and pink, so she poked and prodded at it, and eventually called over another nurse, who also poke and prodded. After that got sorted out, they informed me that since I was a new patient, they had to run the IV at a liter every two hours, instead of one an hour like I was expecting. I’d been planning to be there about two hours, and suddenly it turned in to four hours. After all of that, it turns out that my doctor had written the orders wrong, and we’d have to change plans for future infusions until it was sorted out.

This was when I started melting down. After the waiting, and the touching, and the change of plans, my brain couldn’t hold it together any longer. I started ranting at my wife. She helped me keep my volume under control, and to not blame the nurses for things that they couldn’t control. After that, I lost my words. Everyone was asking me questions and all I could do was nod and try not to cry. My body started stimming without my permission, my extremities started shaking rhythmically, and my head bopped violently to invisible music. And I couldn’t make it stop.

Thank god my wife was there. She communicated with the staff for me, and helped them contact my doctor for the correct orders. She told my nurse that we were going to cut the infusion short, and stop after one liter of saline instead of the two we had planned. She also had them reschedule me for later in the week. After all of this, she got me out of there.

I was so embarrassed.

I have non-sensory related meltdowns so rarely anymore that I kind of thought I had moved past them. I think I have a sort of elitist view of myself that says that since I’m so self aware, I should be above this sort of thing. I’m embarrassed about this too.

I talk so much about Autism Positivity, and I totally believe what I say, but I think that I have to remember that it doesn’t matter how smart a person is, or how self aware, or if they’re well prepared or have coping skills, sometimes meltdowns happen. They happen to all of us. And they’re nothing to be embarrassed about.

Even so, I’m really hoping that next time goes better.

6 Word Stories pt.21

Surgery was successful! Do you know what this means? I’ll shut up about hospitals and doctors and incisions for a whole month!! Which is when my next surgery is…Anyway, I was able to predict most of the autism related surgery issues, like smelly funny from antibacterial soap, and the itchiness of the bandages, but the one thing I’ve struggled with most is that I’m exhausted and drugged, but my brain is bored. And bored autistic brain is the worst.

  • Betadine gives me Oompa Loompa skin
  • Which is worse, infection or showering?
  • I discovered a new favorite food!
  • You can’t write with no words
  • Too tired to read, what now?
  • Making good slime is so rewarding
  • Why are some relationships so complicated?

That’s all for today folks, I’m off to take another nap.