Ehlers Danlos Archives - Page 63 of 101

My wife begins her 2nd day of headache infusions at the @clevelandclinic

It's been a busy morning already. Lizze didn't sleep very well. She's in a lot of pain and extremely nervous about her second Infusion today. It's very hard to be hopeful when you've been in so much pain for so long and nothing has ever been able to help. I'm trying to get her to go into this as positive and hopeful as possible because state of mind makes a difference. It's a big ask and I understand where she is right now but I just want this to work for her. I view the fact that yesterday's infusion brought her migraine from a 10 to an 8 as a very positive thing. Unfortunately, the last medication that they pushed undid all that progress and made things worse. I understand…

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February 12, 2019

Cleveland Clinic / Headache Infusions / Lizze / Migraines / My thoughts / Neurological Center for Pain

The first day of headache infusions had some painful drawbacks

It's been a really, really long day and I'm going to make this a quick update. I want to let you know how the first day of headache infusions went for Lizze. It's been a mixed bag for her. For starters, the Cleveland Clinic is amazing and the staff made Lizze feel very comfortable with the process itself. She was very nervous going into today and was relieved by the kind treatment she received. ☺ I mentioned in the previous post that Lizze was feeling a little better as the infusion was progressing. Her migraine went from a 10 to an 8 and that's a pretty big deal for her. Unfortunately, the final medication they pushed caused a very negative reaction and her migraine went to an 11 as a…

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February 12, 2019

Cleveland Clinic / Headache Infusions / Lizze / My thoughts / Neurological Center for Pain

I was an awful parent (by my standards) this morning and I feel horrible

It was a very chaotic morning and I regret a great deal of it. We were trying to get everyone out the door and nothing was going right. The boys were being kids and I simply had no patience. Elliott is at that age where we aren't sure how much is Autism, anxiety and depression or how much is normal teens stuff. All I know is that I needed cooperation and he was not being super cooperative. He would dig his heels in and I just wasn't having it this morning. Rather than continue to offer him patience and guidence, I yelled. I wasn't really yelling at him but rather at the situation and that was just as bad. I'm not talking simply raising my voice but actually yelling at…

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February 11, 2019

Cleveland Clinic / Lizze / Migraines / My thoughts / Neurological Center for Pain

Please keep my wife in your thoughts and prayers as she heads to the @ClevelandClinic for most of the week

This is going to be an absolutely crazy week. In fact, it's going to be one of the most challenging weeks we've had in recent memory and we're going to need all the help we can get. Thankfully we have that help in the form of our parents, on both sides. I meant to get to this on Friday but I didn't. Lizze was approved for here headache infusions and they begin in the morning. We will be making the sometimes three hour round trip, four days in a row this week. This makes things very complicated because the boys need to get to and from school each day. We also have Gavin who wouldn't do well on these trips. Thankfully, Gavin will be staying with Lizze's parents until Thursday…

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February 10, 2019

Emmett John / My thoughts

An uncomfortable night’s sleep on our dilapidated couch

After an insanely uncomfortable night's sleep on our dilapidated couch, I woke to Emmett feeling much better. He had a really difficult night and ended up puking. Emmett finally fell asleep on the recliner and I passed out shortly after he did. He's feeling much better but I'm having him take it easy just in case. I'm really hoping last nights stomach issues were simply something he ate. This poor kid can't catch a break but he's feeling better and that's something.

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February 10, 2019

Emmett John / My thoughts

We just can’t catch a freaking break

We were able to get all our running around done today without too many problems. Gavin had some problems but nothing we couldn't handle. He had an off day and just seemed like he was lost. I don't know what's going on with him but hopefully, he'll be in a better place in the morning. Unfortunately, the day went downhill after we picked up the boys and brought them home. Emmett wasn't feeling well and we tried to get him to rest. He was absolutely miserable at bedtime and had a rough time falling asleep. While he did eventually drift off, he woke up shortly after and was definitely feeling worse. He came downstairs in tears and we made him comfortable on the couch. After about an hour, he ended up puking…

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February 10, 2019

My thoughts

We received some amazing news last night

I was able to sleep in this morning and that was amazing. We have some errands to run before the boys get home this afternoon. I have to pick something up for the podcast and Lizze needs some art supplies so she can work on altered art books with Elliott. These are very therapeutic and we're trying to help Elliott find a means of expressing himself in a more constructive way. We also need to hit the grocery store because we need food. It's going to be a very, very, very challenging week ahead because Lizze's headache infusions were approved and she starts Monday. ☺ I'll talk more about that next time because that's a complicated, logistical nightmare but we have to make it work. I just got back from…

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February 9, 2019

Autism Parenting Struggles / Elliott / Gavin / My thoughts

I’m frustrated, heartbroken and unable to sleep

Life has been getting in the way of writing lately and that's frustrating. This is a major outlet for me and when it's impeded, I tend to struggle a bit more. My intention with this post is to play catch-up. I think the last time I wrote anything significant was in regards to our chaotic trip to the immunologist eariler in the week, so we'll pick things up after that. The following day, I had a doctor's appointment of my own. It was just a check-up with my primary but the results of the check-up were relatively significant, at least for me. The appointment went really well. My blood pressure was perfect and my weight is continuing to drop off. My big concern was the results of my recent lab…

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February 8, 2019