It’s actually been a pretty awesome day so far

I had a pretty great afternoon. Emmett ended up going with me to take my mom to PT. He did really well while we waited, and of course, my mom kicked ass during therapy as well. Her knee was replaced exactly one month ago and she's already able to walk without a cane while around the house. It seems like she's doing really well. Emmett and I waiting for my mom to finish PT After therapy, we went for a short walk around the mall because she wanted to go walking. Afterwards, Mr. Emmett was hungry, and so we stopped at the food court and grabbed some lunch. It was really nice to just have some time away. Anyway, when I got home, I got some work done, repaired my…

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Fricking #restlessleg is killing me

I'm starting this day at a deficit because I didn't sleep well at all. I've spoken about restless leg a few times in the past because it's a problem for me. My mom significantly suffers from restless leg, and I'm not sure if there's a genetic component to it. I don't know if any of my siblings deal with this, but I should probably ask. Anyway, last night was really bad for me. It's always seems to be my left leg and I don't really know how to describe it other than saying that it's so bad that cutting my leg off seems like a viable option. That sounds dramatic but if you've ever experienced the feeling of restless leg, you probably get it. Thankfully, I don't seem to deal…

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Today’s Victory: How we recovered from an absolutely disastrous day

Nothing about today went as planned. It was incredibly stressful and frustrating because it was just one thing after another. Today was the day we were supposed to divide and conquer because Lizze needed to be at the Cleveland Clinic while Elliott needed to be at Akron Children's Hospital before we'd be back. We had worked things out and made arrangements for Lizze's mom to take Elliott to Akron while I drove Lizze to Cleveland. Unfortunately, Lizze woke up very early this morning and was not feeling well at all. There was no way she'd be able to make the 90-minute drive to Cleveland. It just wasn't going to work. She was able to reschedule, and while it threw things off a little bit, it did free me up to…

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Today’s Victory: We were able to pay for my wife’s medication

Today's victory is a bit unique but also something I think people can relate to in a general sense. Money is very tight this month and we're really struggling. We have a great many medical issues that we're contending with and most of them require medication. We're very lucky that most of our medications are covered but there's one in particular that isn't and it's pretty expensive. As many of you know, Lizze is dealing with severe chronic pain from fibromyalgia, Ehulers Danlos, and chronic daily migraines. She's also being treated for PTSD and has pretty severe social anxiety issues. For the last decade, we've tried every medication that was appropriate for her situation, as well as any therapies. Unfortunately, nothing has ever really helped. Her migraines haven't responded to…

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OMG it’s like pulling teeth

I got my walk in bright and early, after a semi-decent nights sleep. I took some ZzzQuil before bed, and sometimes it takes forever to shake off in the morning. We have to make a trip to the dispensary this afternoon. It's an extremely expensive trip but it's a necessary one. Lizze hasn't been here in a couple of weeks because she uses it sparingly. While it is costly, it makes such a difference in her life. This is a must. Later on this afternoon, we have therapy with the kids. We also need to get Gavin's Clozapine refill today and that's seemingly like pulling teeth at this point. Every fucking week it's nightmare trying to get this prescription refilled. There's so much red tape that in every single year…

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Today’s Victory: It looks like physical therapy is a go

There are many things that happen in the course of the day for an Autism or Special Needs family. Frankly, things move so fast that it can be very difficult to keep up. Speaking for myself, it feels like I spend most of my time, running around putting out fires. It's even more difficult when the other parent is chronically ill because life becomes infinitely more complicated in pretty much every way imaginable. Lizze is dealing with lots of health issues; most impactful are those related to her chronic pain. She's made tremendous progress over the years and there's hope that things will continue to improve. The reality is that living with things like Ehlers Danlos, fibromyalgia and chronic migraines can't possibly be understood unless you're loving it first hand.…

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Apparently purple is for girls?

Gavin's blood work went great and even though they didn't have the color of wrap normally gets, he accepted purple. I think he views purple as a girls color and therefore accepting it is a pretty big step for Gavin. We've tried to explain that guys and girls can wear whatever colors they like. He's very simplistic in his views and that's not likely to change. 🙂👍 I ended up walking in the rain this morning after I finished with Gavin. It was actually significantly colder today than it was yesterday. We've been dealing with 110° F temps recently, and today it was in the low 60's and pouring down rain. A little bit ago, Emmett and I got home from picking up his birthday present. It took him forever…

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In true Monday fashion, my plans have fallen apart

I woke up this morning with every intention of going walking but for the third day in a row, mother nature has had other plans. The temps have dramatically cooled but now it's raining/storming and it will be for most of the morning. I do plan on trying again throughout the day, as there are breaks in the weather. Instead of going back to sleep, I decided to catch Gavin before he took his morning meds and get his blood work done. He was stressing out over it last night, and I figured he'd appreciate getting it done right away so he could take his meds, as well as his morning nap. I'm writing this as I sit in the parking lot and wait for Gavin to have his blood…

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