A little over a month ago I posted a general update about my health, and all the myriad things I have going on with it. I’ve made progress on a few things, had a few setbacks, and I’m slogging away at others.
The Ankle I Did In
Let’s start with foot and ankle surgery. I had it done on April 5. The surgery itself went great according to my MD’s notes. He’s very optimistic about a full recovery. So yay!
The nurse who was with me in recovery from anesthesia noted, however, that I had an itsy-bitsy problem with continuing to breathe during the surgery. I guess I kind of freaked some people out. Apparently my asthma kicked into high gear during anesthesia. I’ve had asthma since I was a kid but it’s extremely mild and I never really have issues with it so I’m surprised it cropped up. I woke up with a rescue inhaler on my bedside table and feeling wheezy.
The actual recovery from the surgery itself is pure suckage. I went three weeks in a splint with no weight on my foot at all.
They then told me I could start walking in a fancy new boot.
Attractive though it is, it is not giving me miraculous walking powers. I’m still on crutches, and using them for about half my weight, and using a knee scooter to get around the house to avoid having to deal with crutches all the time. I’m sure I’d be doing better if I weighed less – I’m trying to put significant lbs on it. I’m pretty miserable honestly, because I can’t do anything around the house. I have ADHD, and can’t get up and pick up the house and clean and organize and do all the usual things I do to address my urge to move. Frankly, I’m downright cranky. Am I making progress? Surely I am. I can go a little further now walking with the crutches than I could a week ago. But this recovery process ain’t a picnic. Or maybe it is a picnic, but one with mosquitoes and ants and bad food and a sudden downpour.
Want a look at the gruesome Frankenstein’s monster foot? Be warned it’s gross!
Anyway, I have about four more weeks left in this boot. Or rather a boot, since I need to have this one replaced because it is defective. It is most of the time refusing to hold air, and although I already went back once to have it checked and they got it working, it has since failed again. They will have to warrantee the thing and get me a new boot which I will have to break in all over again. At least it will smell fresh, which this current one does not! TMI?
Creaky Joints
Moving on to my psoriatic arthritis, I started Humira on the 15th of April. The first thing it did was knock me flat out for two days. Legit. I slept for 2 days straight. Then I felt amazing! I had more energy and less pain by the end of the 2 weeks when I was due for another shot. Then I was knocked flat out again for another 2 days. And so on.
Buuuut like with all things in life, my feeling great has a catch, and that’s that I’ve developed pitting edema in my hands and feet. I expected it in the foot I had surgery on so I’m excluding that, but hot diggety, my other foot is so swollen I have sock lines where it’s digging into my ankle, and none of my shoes fit except one poor overworked New Balance sneaker because they run wide. My fingers and toes are sausagey. I broke down and called my rheumatologist today, and she said that it’s a rare side effect of Humira and that only about 5% of people have it, but that it can be serious, and tends not to go away like most other side effects. She’s taking me off it and switching me to Enbrel.
Soooo now I have to let the Humira ebb from my system and wait two weeks to de-puff then start weekly injections of Enbrel. It’s a similar drug so hopefully will work like Humira was showing signs of doing, but without the sausage toes and fingers. And maybe without the extreme two day fatigue after each injection?
My ear
I put off ear surgery until I’m more recovered from foot surgery so that will be done down the road. Getting there on crutches is too much of a pain in the butt and back and heel and armpits right now.
Depression, a.k.a. I love Pharma
I had also written about how my depression had kicked back in after about two years of remission on Effexor. I made the titrated exchange between Effexor and Cymbalta in the month of April, and it was completely effective! Mind you, I’m still cranky about my foot pain, irritable about my Humira failed experiment, and generally a grouch. But I’m not depressed! Hip hip hooray!
ASD
Since learning that I have autism, I have also noticed that some things that I have previously identified as anxiety are actually autism irritability. This feels like a huge breakthrough for me.
For example, the other morning I ordered breakfast from Grubhub, and after about two hours of back and forth with them I finally gave up on its ever arriving. By then I was hangry. Sprout was super whiny that morning for no apparent reason. And I was having a hot flash. I stood in front of my stove and what initially felt like anxiety skyrocketed. But I thought about it for a minute and realized I was completely overstimulated, between the hunger, the whining in my ears, the clinging to my ankles, and the damn hot flash.
I took a few deep breaths. Thankfully it was time to get Sprout on the bus so I did that. Then I ate food. Then I cocooned myself on my futon (I still can’t sleep upstairs in my bed because of my foot) in a soft blanket with noise canceling earmuffs for a while. Voila! No anxiety rescue meds needed. It was never anxiety at all in fact. It was sheer overstimulation, with gnawing hunger, extreme kid frustration, and a bleeping hot flash all rolled into one.
I’ve had a lot of incidents like that, and I’m absolutely fascinated by it. Do I have anxiety issues? Yes, I do. But I think they are largely controlled by my antidepressants. What’s left is occasionally anxiety when my routine is disrupted, and autism irritability around overstimulation. Does it help me to know why I am cranky? Yes, yes it does. I’m not completely sure why but it does. Just recognizing things for what they are can help eliminate some of the overwhelm and can help me identify what I need to do to feel better again.
I’m not a super heavy routine person, but I do have morning and bedtime routines. I wake up super early – around 5 most mornings. I get up. I have coffee. I catch up on Facebook and news. Then the Sprout gets up between 6 and 7 and we get us fed and her dressed and entertained until bus time at 8:30. Then I make myself presentable and face the day.
Heaven forbid anything messes with that routine! I thought I had an appointment with my orthopedic surgeon on Friday that I would need to leave for the second Sprout got on the bus. So in addition to my usual lazing about I had to get myself washed and dressed and brushed and presentable BEFORE the bus came. Not after. Ack. By the time Sprout’s bus arrived late I was a bundle of seething anxiety. But I recognized it for what it was. I knew this time that it was my ASD routine being interrupted that was causing the anxiety, and somehow that helped immensely. Once again, I avoided needing anxiety rescue meds because I knew that the underlying issue was something that was going to go away shortly and wasn’t a big deal. So overall? Yay for better self understanding!
In Sum
I am cranky as eff about my slow foot recovery, delighted that Cymbalta kicked right in, annoyed I still can’t hear out my left ear, and thrilled to be learning more about myself and what makes my autistic self tick.
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