Just Take Me Back to Who I Was When I Was Younger

“Just take me back to who I was when I was younger” A Great Big World

I turned 30 this year, and I’ve started to notice that people my age are feeling old (in a bad way). And I think that’s pretty standard for your thirties. Your twenties are for making mistakes and finding yourself, and you get through that all of that and come into your thirties only to find that you’re *gasp* old.

It hits some people harder than other, I think. From my observations, people who had really positive teens and twenties have a harder time leaving them. I’m talking about the folks for who the phrase “high school is best years of your life” applies. And this isn’t a bad thing! I mean, who can judge someone for having a positive experience, right? All I’m saying is that I was definitely not one of those people.

My teens were filled with a chaotic home life, trouble with teachers, coming to terms with my queerness, and the beginning of the mental illness that would define my twenties. My twenties, as you might have guessed from the previous sentence, were filled with breakdowns. I had an Autistic Burnout which left me with a slew of sensory issues. I cycled from being incredibly productive, to not leaving the house for weeks (if this sounds familiar, I suggest you check out Bipolar Disorder). I spent two years in higher level care for an eating disorder, and also three psych hospital stays during that time.

I clawed my way out of my twenties, and now that I’m free, I’ve realized something. You couldn’t pay me to be young again. I like being my age, so many good things have happened over the last year or two that makes me so happy to be where I am in life.

The thing that changed my life was my Autism Diagnosis. Guys. Ladies and gentlemen, dudes and dudettes, knowing changes everything, and the number one thing that it changed was how I viewed myself. I had been told (and so I believed) that I was smart but lazy. Feeling that way about yourself does a number on your self esteem. So when I found out that I was not in fact broken, but Autistic, something changed. Not overnight, obviously, fast than I had expected. My diagnosis also gave me access to services like Occupational Therapy, where I’m learning strategies to help me function as my best self.

So here I am at 30, and how am I spending the first year of my decade? I’m in college, for the first time in many many years. I am active in my church, and I volunteer with an organization that serves children and adults with developmental disabilities. In a few weeks my wife and I celebrate our 10th wedding anniversary, and our relationship is so strong (partially because we’re awesome, and partially because we’ve had a lot of therapy, individually and together. I’ve been working on my gender identity, and had top surgery to help me feel like I fit in my body. Due do a procedure and a new medication for my POTS, I am so far able to do more things (museums, the zoo!), and be so much more active (riding bikes, rock climbing!)

And that is just this year. For the first time in forever, I’m looking forward to what’s coming. And I’m not one of those blissfully optimistic types that assume everything will always be perfect. I have Autism, and sometimes, that sucks. I have mental illness, and sometime that sucks. I have a chronic illness, and that almost always sucks. But when these things are well controller, I can work around them. When I am a stable human being, I’m better prepared for issues that may come.

I definitely don’t want to go back to who I was when I was younger, but I do wish I could leave past me a note saying “don’t worry, it won’t always be like this.”

 

Top Surgery Recovery: A Month in Pictures

My god does it feel like forever since I’ve been here. It hasn’t really though, it’s been almost exactly a month, and do you know how I know that? It’s been 4 weeks since my surgery!

Now between the recovery and the pain meds and the inevitable POTS flare, blogging has been low on my priories list. I have however, been taking a lot of pictures.

*warning* Some of these are of my bandages and incisions, so if you’re squeamish or avoid NSFW stuff, I’d stop here.

Are we all ok from here out? Excellent! Here we go!

This is 24 hours after my surgery. The bundles on my grafts stayed on for another 6 days!

We have a tradition that I get a new stuffed animal after a surgery. This is Shel the Unicorn, who is very soft, with a super stimmy horn!

Not to be outdone by Shel, Angel checked in on me whenever he was allowed. The cats had to live in our office for a few weeks, so they wouldn’t accidently disturb my grafts or my incisions. 

You may not be able to tell from my face, but I so excited because my drains are coming out- and that means that for the first time in 9 days, I can shower!

Here I am discovering one of the best parts of Top Surgery: being able to look down and see my feet without boobs in the way!

After this type of surgery, you have to wear a surgical compression garment, which are sensory hell (especially knowing now that they game me the wrong size!). This picture was taken when I was finally able to wear an athletic compression shirt instead, and what a relief it was!

Chronic illness doesn’t care about gender or surgery, so this is my modified Physical Therapy  set up, so hopefully my POTS will continue to improve!

I hate to end on a depressing note, but reality is what it is. One of my grafts failed, and that is both painful and upsetting. The healing is slow, and we won’t know what it will look like until it’s totally done.

That was quite a ride, eh? And it’s still going.

My sad, rejected graft still has a lot of healing to do. I’ll also have to decide how I want to deal with it if the damage is super obvious.

I also start classes next week, I’m finally finishing my Bachelor’s! It’s been 12 years since I’ve been on a campus or in a classroom, so this should be interesting.

Look forward to ‘Autistic Adult Student’ posts coming soon to a blog near you!

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!