Ehlers Danlos Archives - Page 42 of 101

It’s total chaos this morning

Today has turned into chaos. I had everything planned out, and we were going to be dropping the boys off at Lizze's parents before high tailing it to the Cleveland Clinic for Gavin's long afternoon of testing. Unfortunately, Lizze woke up super early this morning and was in excruciating pain. Nothing is helping, and she's in so much pain, that she's sick to her stomach. There's no way she can make the trip. We're running behind, the house has erupted into chaos, and I'm stressing out cause I hate doing these things alone. I'm very capable, but I don't like doing them alone. Lizze always has great insight, and with both of us there, we have the bases covered. I'm not mad at all. I'm just not excited about the…

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June 11, 2019

Cleveland Clinic / Gavin / My thoughts / Psychiatry

Gavin has major testing today at the @ClevelandClinic

Today is a massive day for us. Gavin will be spending the day at the Cleveland Clinic for one of the most critical appointments he's had in a very long time. Gavin will be undergoing another round of neuropsych testing. It's been many, many years since he went through this battery of testing the first time and it's long overdue. It's very difficult to get in to have this done because they were booked out so far into the future. We also had insurance issues that indefinitely delayed things as well. Click here for previous posts on neuropsych testing and why it's important. Basically, Gavin will undergo hours of psych testing today. The purpose of this is to see where he is cognitively, as well as emotionally, and compare it…

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June 11, 2019

My thoughts / Reviews

Review: The Nixplay Iris Cloud Frame is a fantastic digital frame (@nixplaycloud)

At the time of writing this review, Father's Day is quickly approaching, and one of the coolest things you can give a Dad in this digital age is a digital picture frame. I've been a Dad for almost twenty years, and memories are something that I cherish. In my opinion, the best way to display those memories is with a digital picture frame. On the off chance that you are unfamiliar with digital frames, they're picture frames with an HD display built in. This display allows you to show countless pictures, without having to pull the frame down, remove and replace the photo. I've used tons of digital frames over the years, and the Nixplay Iris is a cloud frame and easily among the best I've used. I'm a tech-savvy…

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June 9, 2019

Clozapine / Gavin / Medication Management / My thoughts

This is a f*cking nightmare every week

It's Sunday, and we still have not been able to get Gavin's Clozapine refill. He has his bloodwork done every Wednesday morning, but the pharmacy either doesn't check for the labs, or they aren't sent to them in the first place. We end up waiting and waiting for the refill to come in. I set everything up so that there's a few days of overlap, and we have a backup supply as well. Timing is of the essence with Clozapine because he can't ever miss more than two doses. Lizze called again today, and they should have it ready in the morning. We still have his backup supply, so he's not missed anything. That being said, it's incredibly frustrating. There's so much red tape surrounding Clozapine, and it's a nightmare…

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June 9, 2019

Confessions / Depression Management / My thoughts

I’m fighting #Depression tonight

We had a pretty good day. I didn't make it to the park to go walking, but it's okay because I needed to rest instead. I use Biostrap to track my vitals, and it tracks tons of valuable information. It also lets you know when you've recovered from the previous day's workout, and when you need to rest. Friday I had a great day, but after a night of terrible sleep Friday night, Saturday wasn't so great. Frankly, my sleep wasn't the best on Friday either, but overall, I was in a much better place both physically and emotionally. ☺ Anyway, the whole point is that I didn't mind taking the day off from walking. Lizze wasn't doing so well and wasn't able to keep up with the boys. It…

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June 9, 2019

Autism Parenting Heartbreak / Gavin / My thoughts / Schizophrenia

Heartbreaking: We do what we must for those that we love

I'm way behind on this update, but life has been getting in the way of writing. That said, what better time than the present to get everyone caught up. This particular update is in regards to Gavin and Wednesday night therapy. I had mentioned that he was chomping at the bit to update us on the missions he's been on recently. I also said that my enthusiasm for those updates was a bit lacking because it's a lot to take in, and it's a reminder of just how much he struggles with reality. It's important to me that I be supportive of him, but at the same time, I can't feed into his delusions. It's a very blurry line on the best of days, and it's not easy at all…

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June 7, 2019

Affiliate / My thoughts / Parenting Resources / Reviews

Review: Jiobit GPS tracking for autistic kids

I'm a huge technology junkie and love using it to improve the quality of my family's life. Sometimes, however, something comes to my attention that I want to bring to my readers ASAP because I believe it can have a direct impact on their lives or the lives of their loved ones, and Jiobit GPS tracking is one of those things. Why GPS Tracking Matters Most of us are familiar with the many safety-related reasons why someone might want their kids to carry a GPS tracker. Sometimes it's making sure they get where they're supposed to go, and other times, it's just a safety precaution. While everyone may have a different reason for wanting their child to have a GPS tracker, when it comes to Autism parenting, GPS tracking can…

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June 6, 2019

My thoughts

I managed to turn my day around

A bit of exercise and fresh air does the body good. Frankly, it does the mind and soul good as well. I was feeling depressed and emotionally drained today but was able to get out for my walk. I walked just over three miles and feel so much better. Exercise is such an important part of self-care. While it's obviously good for the physical body, it also helps to decompress and better manage the insane amounts of stress associated with Autism parenting. I'm so grateful that Lizze was feeling better after her nap, and I was able to go. All I have left to do is go to spend time with my Grandma. I'm going to bring some work in case she's sleeping. I can just get some things done…

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June 6, 2019