Waiting Waiting Waiting

*this is a vent in the purest sense of the word. I’m hoping that talking through how I’m feeling might grant me some insight*

Frustrated. Angry. Confused. Scared. Upset.

These are all “feelings” words that describe me today. Okay, not just today. Maybe its more like a few weeks. Or a decade. Or my whole life.

I’ve spent the last decade or so living with a chronic illness, and I like to think that by this point I’m pretty good at dealing with all things health-related. I’ve now realized that this is a lie. I’ve been lying to myself without knowing it.

There are, in my opinion, two major parts to being ill- the Physical and the Mental.

When it comes to POTS, I’ve got both of them down. I’m used to my heart rate jumping high, I’m used to being dizzy, and I’m used to my body being unpredictable (POTS affects your Autonomic Nervous System, which controls everything from how well your body digests food, to how efficiently it pumps blood through your body). And when it comes to the mental part, I can handle feeling useless, feeling frustrated that my doctor isn’t calling me back or that test results are taking forever. I’m even used to not getting to do things that I want (mostly things that involve a lot of standing).

The POTS stuff, as I’m sure you’ve realized is just background for what’s happening with me now.

About 6 months ago, I started to experience dyspnea, which is med-speak for ‘I can’t breathe when I lay down”. Thanks to POTS, I didn’t panic. I’m used to weird stuff happening to my body, remember? I figured that whatever it was transient and would disappear as soon as it began. This, my friends, was tragically optimistic of me.

I’m going to gloss over the first pulmonologist that I saw, the one who told me that I had Respiratory Muscle Weakness, a pretty severe case, and then refused to call me back. For a month! It sure feels like a kick to the gut when the person who’s supposed to be taking care of your health thinks that you’re too complicated and pawns you off on someone else.

*deep breath*

The doctor situation is better now. I’ve got smart specialists who communicate well. I’m so thankful for this, but I’m still frustrated and angry and confused and scared and upset. If I felt this awful when I was getting my POTS diagnosis, then I clearly must have blocked it out because it is damn near unbearable.

It’s the waiting that really gets to me. I’ve spent this past few weeks on the edge of my seat, waiting for test results to come in, and for doctors to call me back. And every time a test does come back negative, half of me is overjoyed that I don’t have Myasthenia Gravis or something like that, but the over half of my brain whispers to me that at least it would have been an answer.

So that’s all of my insight, every last piece. And what have I learned? I know that I don’t handle the unknown very well (this should not be a surprise to any of us though). I know that doctors who treat me like I’m a nuisance make me a tiny bit homicidal. Lastly (and this is the big one, I think) I realized that for the first time in the entirety of my adulthood, I’m really happy with my life, and the idea of some medical condition fucking it up is what’s making me frustrated and angry and confused and scared and upset.

So I’m going to keep my self grounded. Maybe do some self-care. I will not obsess about something I can’t change. And most importantly I’m going to keep my fingers crossed for an answer that’s straightforward and easy to treat. Something the exact opposite of POTS.

And until then, I’m going to BREATH

 

10 of my Favorite Things

So here’s the deal, my friends, I can’t lift more than a coffee cup, I haven’t showered in a week, and I’m still kind of high on painkillers.

So. I’m going to cheat just a bit and make this List Wednesday about some of my recent favorite things. I hope you’ll understand, and possibly even find a new favorite things

1. Chocolate Bundt Cake: It can be hard sometimes to find a recipe that converts well to gluten-free, but you’d never guess that this cake wasn’t written that way. We use Cup4Cup gluten-free flour blend, and it comes out moist and fluffy and everything you’d ever want in a Bundt cake!

2. Shel the Unicorn: I’ve had a few surgeries over the years, and they all have two things in common: afterward I get pancakes and a stuffed animal. Shel the Unicorn (and her relative Dax the Sloth) come from the Manhattan Toy Company and are about the softest stuffies I’ve ever had. There is nothing better than having a new friend to snuggle after you have an operation.

3. 3DS Kingdom Hearts: The original Kingdom Hearts for ps2 was my first RPG, and it holds a very special place in my heard. About 15 years after Kingdoms Hearts came out, we’re finally going to get Kingdom Hearts 3. It’s been one hell of a wait. But while we’re waiting, Nintendo put out a new 3DS version that I’m having so much fun with. New worlds and old favorite characters are making the wait much more bearable.

4. Overdrive App: I have been a library addict since I could read, and the only thing that makes free books and other media better is not having to go to the library at all! The Overdrive App lets you check out eBooks and audiobooks out from your local library without ever leaving the house. Plus they sync with kindles, tablets, and smartphones so you can read and listen wherever you want!

5. The Golden Compass Audiobook: The His Dark Materials trilogy has been one of my favorites since childhood, and oftentimes the problems with loving a book so much is that the audiobook is never as good as it is in your head. This one is an exception. The author, Phillip Pullman is the narrator, and it has a full cast that sounds very close to what I expected. We listened to this on the way to and from Kansas City and it was perfect road trip material!

6. Simple Gel Cream: I thought when I made it to adulthood without acne, I was in the clear. That was a lie. Here I am at 30, with my face bleeding every time I touch it. Washing my face is sensory hell, as is lotion, but I’ve been trying to find things that I can tolerate, and this moisturizer is it. It isn’t a weird texture, it sinks in quickly, and there’s minimal smell. If only all skin care was this easy.

7. Queer Eye on Netflix: Whenever I watch an episode of Queer Eye, by the end I’ll inevitably end up with dust in my eye because I’m definitely not crying. I’m old enough that I watched the original Queer Eye in high school, but this reboot is miles ahead of it. Yes, there’s still a wardrobe change and new recipes and a big reveal, but the reboot takes more of a holistic approach, helping the Guy live as his best self. The original focused on Straight Guys, but the new seasons so far have has a woman, a gay guy, and even a trans guy!

8. Hardback Game App: I think I may have mentioned my love of board games here before, and the only thing better than board games are board games on the go. A lot of board game producers are starting to make app versions, which is great, because they’re way cheaper and much more portable, and let you play online or against someone sitting next to you. Hardback is like Scrabble on steroids, and for less than 5 bucks, it’s my favorite new game.

9. Speed cube: I learned how to solve a Rubik’s Cube almost 10 years ago, and since then have been using it as me “fun facts about me” fact. It also makes a great stim toy. I used to buy Rubik’s brand cubes and take them apart and sand them down, and then lube them up with silicone, in order to make them faster and smoother. But no more! Paying the extra couple of bucks for a speed cube makes so much difference, I can’t stop playing with it, and it glides like butter.

10. Angel: My cats have had to live in the office while I’ve been recovering, but Angel is gentle enough that he’s been allowed supervised visits. It’s lifted my spirits to have him snuggle up against me and purr like a motor.

So. These are a few of my favorite things. As always, I’d love to hear about yours- it’ll give me something to check out while I’m couch-bound!

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 hoofbeats, 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. 19

Hey there, I hope you all had great Christmases, and that you’re ready for the New Year. We have a low key night planned, mostly focused on snacks and board games. I’m still working on handling the surgeries. After a lot of discussions, it was decided that since I’m going to have 2 surgeries in the first month of classes, it wouldn’t be a very good idea to try, since I wouldn’t be able to drive myself to class, I’d be on painkillers through  them, and I’d likely be sleeping too much to do homework. In happier news, my in-laws got me a heated blanket for Christmas! I’m a heating pad addict and had been wanting a blanket, and they got me one without even asking! It’s so soft and so warm, the only downside is that the little bastards love the blanket too, so I’m constantly covered in cats.

  • I won’t need my cane soon!
  • Upset I had to drop classes.
  • Maybe I should be more upset.
  • Changes are coming soon- stay calm.
  • Special Interest gifts are the best!
  • Thanks heated blanket, I’m so warm!
  • A new year, new bullet journal.

Have a very nice rest of  2017, and I’ll see you next year!

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 left 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 caused by 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 to 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.