Ehlers Danlos Archives - Page 99 of 101

I’m getting out for a bit tonight

This evening I'll be participating in a guys night out for the first time in a while. It's usually my Dad and friends of the family or from church that get together once a month. I've only gone once before and it was a lot of fun. I'll only be gone about two hours and so I don't stress out too much about being away. Life isn't easy. I'm trying to take advantage of moments like this because it allows me to step outside my comfort zone and sorta decompress for a little bit. Speaking for myself, but I know many of you out there get this, as much as I need a break, I'm always nervous about taking one. It seems counterintuitive but it's just something I struggle with.…

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September 20, 2018

Why am I so exhausted? I’m an #Autism parent, that’s why

Going into this post, it's important to know that I'm frustrated and trying to make a point about why Autism parents, like myself are so exhausted all the time. Every time I'm asked why I'm so exhausted, it's a reminder how little people understand the challenges I face as an Autism parent. I'm absolutely venting but trying my best to do so in a way that helps to put things into perspective. I shouldn't have to say this but I love my kids and Autism is part of who they are. I accept them and love them just the way they are. The reality however, is that Autism can make things very, very difficult. If you can relate to this, please show your support by clicking the Like, Share or…

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September 20, 2018

My thoughts

Yesterday was largely positive but it still took its toll

Everyone got off to school okay and it's been a decent morning. Lizze is in a great deal of pain, a bit grouchy, but understandably so. Yesterday took a toll on her and she's going to need to recover. I feel pretty good about yesterday but I'm crazy exhausted from it at the same time. Gavin's a bit off this morning and I'm not sure what's going on. We're going to have to keep an eye on him today and try to stay a step ahead of him. I'm going to go walking shortly and then I'll finish working on the post about Lizze's appointment yesterday. Stay tuned.

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September 20, 2018

Emmett John / My thoughts / School

This is why my youngest with #Autism begged us to pull him out of his school

Tonight, I'm just going to get into what happened at the school to make Emmett want us to pull him out. I'm too tired to deal with all the Cleveland Clinic stuff tonight as well. I'll get to that a bit later. As the school year enters its forth week, we've noticed Emmett is becoming increasingly more distressed. His tummy aches are back and he's not wanting to go to school. We didn't know there was a specific something going on that was causing these issues. Emmett's no stranger to tummy aches in the morning and while it's generally a sign that he's stressed out, the cause of that stress could literally be anything. More often than not, he's never able to tell us what's bothering him and it takes…

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September 20, 2018

Cleveland Clinic / Lizze / My thoughts / Pain Management

The appointments went well and we just arrived home

Lizze and I just got home. We've been gone for about 10 hours in total. It's been a really, really, really long day. The boys are currently on the their way home and once their settled in, I'm going to likely go walking. Lizze's appointments went very well and we're still sorta digesting what we learned in pain management. I'll work on a summary of both the pain management appointment and what happened at school in regards to Emmett. I'm pretty sure we've resolved that issue but time will tell. Right now, I'm just tired. I don't really want to go walking but that's all the more reason for me to go. I'm on course to finish my monthly goal almost 10 days early. That's awesome. ☺ Anyway, my plan…

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September 19, 2018

Cleveland Clinic / Fibromyalgia / Lizze / Migraines / My thoughts / Pain Management

Hello Pain Management at the @ClevelandClinic

After a quick lunch, we've made our way to Pain Management. It was about a 35 minute drive from the main campus. We realized that we been to this location before. It was many years ago when Gavin was little. This is where he saw his first Cleveland Clinic Neurologist for his movement disorder. It's been a long time but it brought back some memories of the very early days in Gavin's health journey. Anyway, we're actually a bit early but she's checked in and filling out the questionnaire. They said she might be able to get in early. ☺ Lizze and I have come up with a list of questions, so we can maximize the time we have here today. I saw someone asked in the comments on the…

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September 19, 2018

Cleveland Clinic / Lizze / My thoughts

We’ve made it to our 1st appointment at the @ClevelandClinic today

We've had a crazy busy morning, also got run off the freeway by someone texting and driving but we've finally made to the Cleveland Clinic. It's been chaotic thus far but we made it safe, sound and on time. ☺ If you've never been to the Cleveland Clinic, it's a top 2 hospital in the entire country and we're lucky enough to be within about an hours drive away. The main campus is amazing and the doctors are literally the best in the world. Gavin and Lizze receive most of their medical care at the Cleveland Clinic and I can't say enough about the quality of care they received. Aside from being a fighter, I firmly believe Gavin is alive today because of his specialists here, especially his Neurologist. One…

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September 19, 2018

Cleveland Clinic / Fibromyalgia / Lizze / Migraines / My thoughts / Pain Management

There’s so much riding on today

Thankfully, Emmett's in a good mood this morning because we finally understand why he's been so frustrated with school and no longer wants to go. Hopefully, we'll get some answers this morning and can put his fears to rest. I'll explain more when I can. He's not being bullied or anything like that. This has to do with what appears to be a classroom policy. After that, the biggest thing we have going today is one of Lizze's appointments at the Cleveland Clinic. One of her appointments today is very important, while the other is a routine follow-up. Lizze is going into the pain management program at the Cleveland Clinic. We're heading to the amazing @ClevelandClinic today in order to find relief for my wife, who's living with chronic pain.…

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September 19, 2018