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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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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I want to share some good news

I've been living at my grandmother's nursing home for the last couple of days. My brain is completely fried, and I'm exhausted beyond belief. While I was here yesterday, Lizze got word back from her neurologist about the results of her recent MRI that was done on her brain. Her doctor contacted her to let her know that everything was normal, and there's no physical abnormalities in her brain. That means no tumors and the cysts aren't an issue either. That's obviously a relief but also frustrating at the same time. She's in so much pain all the time, and part of her would have almost been relieved if something had been discovered because then at least we knew the cause of her pain. That being said we're very grateful…

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It’s not at all what we expected

I'm keeping this brief because I'm exhausted, both emotionally and physically. That said, I did want to let you know what happened at Lizze's appointment with her orthopedic specialist. The X-rays came back and apparently; there's nothing that requires surgical intervention. That's awesome but not at all what we thought was going to happen. Lizze has been told a few years back that she needed surgery to clean up her knee. She put it off until her knee was so bad that she couldn't take it. It turns out what looked like damage was a bit of arthritis behind her knee cap. The problems she's experiencing don't seem to be her actual joint physically. What the doctor thinks is happening is that the arthritis is causing something, I can't remember…

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Is knee surgery in our future?

Alright. Lizze had her knee x-ray, and as expected, it went just fine. We don't know what they show, but the process was smooth. She got in early, and we had about an hour to kill before she sees her doctor to learn the results. I was mistaken about her having an MRI on her knee today as well. She needs it and will have it done, but insurance required the x-ray first, and then we can schedule a return trip for the second MRI. It would be nice to knock this all out today, but insurance is being difficult. It's only about an hour long drive to get here, so it's not a huge deal. We just can't get enough of the Cleveland Clinic. 🙄 Hopefully, we'll at least…

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The @ClevelandClinic is probably getting sick of us

We got the boys dropped off and made our way back to the Cleveland Clinic again today. This time we're at the Medina location because that's where her orthopedic specialist is. We have a crazy long day ahead of us and plenty of time to wait between appointments. Lizze is getting an x-ray of her knee first; then she sees her doctor. About two hours after that, she has an MRI with contrast of her brain. This is related to her migraines. You may remember that Lizze has what her old neurologist called, a brain full of cysts. They are not believed to problematic, but her current neurologist at the Cleveland Clinic hasn't seen them, and he wants to make sure all is well inside her dome. We have always…

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It’s eerily quiet in my house right now

It's super quiet in my house right now, and that rarely happens, but I like it. Emmett is watching a video, Gavin is sleeping off his morning meds, Elliott is just sleeping, Lizze is getting ready for her appointments, and I'm writing this. 😊 We have a long day ahead of us, and on the other side of it, we'll know how bad Lizze's knee is and what kind of surgery is necessary. I know she's really nervous, but today is just about gathering information. I'm hoping that anything she needs to have done is minor in nature. It seems like everyone in my life right now is undergoing knee replacement surgery. I'm not sure her knee is that bad, but we'll soon find out. Please keep her in your…

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What happened at the @ClevelandClinic last week?

I just realized I neglected to mention how Lizze's appointment with the Neurological Center for Pain at the Cleveland Clinic went. For starters, the staff was absolutely amazing. Not that it's a surprise, but it really is important to note that because we've had some truly awful experiences with other medical facilities in the past. The Cleveland Clinic, however, never disappoints. Anyway, as I had previously mentioned, Lizze needed to decide how to proceed with her migraine medication called Aimovig. Aimovig is a once a month autoinjector that is designed to help prevent migraines by blocking a protein thought to trigger migraines. Lizze has been on the lowest dose for about four months now (I believe) and she hasn't really noticed any improvement. If she didn't have use of her…

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