4 Reasons There‚Äôs 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.

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.

Torn By Caution

I think that I’ve mentioned here and there that I’ve got some medical issues. I’m dealing with two right now.

One is, I’m having a lot of pain and numbness and tingling in my right leg, all the way up to my hip and lower back. After 7 months of pain, 5 different doctors, 4 MRI’s, and 3 injections, we’re at the final option: surgery.

The second problem is chronic, and it’s called POTS. It’s a neurological condition that’s cause my dysfunction of the autonomic nervous system, and I’ve been dealing with it for almost a decade. I’ve done all the tests, I’ve tried all the meds, I’ve suffered through all of the therapies. Except one.

Fluid therapy. My neurologist isn’t really a fan of it, and he has some valid reason, but we’ve run out of things to try and improve my quality of life. This therapy involves getting a liter or two of IV saline a few days a week. Problem is, getting IVs put in that often is hell on your veins, and often results in blowing out a lot of useful veins. So we’ve decided to put in a port, and what does that mean? Surgery

I’ve been out of school for about 6 years, and this spring, I planned to take a class or two at my local community college. I was really excited, because if these classes went well, I was going to start the process of getting a Bachelors.

But there’s an issue here, and I bet you’ve noticed it. I need to have two surgeries, and they’re both going to be during the first month of classes. So what do I do? I’m torn. I want to go back so school so badly. I’m ready to move forward with my life and this is the way I’m going to do it. But if I’m couch-bound for a week both times, my work will suffer. If I’m on pain medication and unable to think straight, my work will suffer. If one or both of the surgeries cause a POTS flare, my work will suffer.

So what do I do? Be cautious and realistic by dropping my classes? Or follow my heart and hope that it will work out? I just don’t know.