Ehlers Danlos Archives - Page 64 of 101

I’m focusing on #selfcare and seeing my doctor this morning

As part of my focus on selfcare, I'm seeing my doctor this morning. For a long time, I avoided the doctor because I wasn't making myself a priority. I reached a point that by the time I realized I needed to go back, I was too afraid of what I might learn. When I did eventually return, I learned I had some work to do and that I needed to start making myself a priority or my health would continue to suffer. My health wasn't too bad but my numbers were out of whack and my weight was out of control. I needed to make some serious changes and the sooner the better. Long story short, I did just that. Since November of 2017, I've lost 40 lbs, my cholesterol…

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February 7, 2019

Emmett John / My thoughts / PFAPA

We’re praying this finally helps Emmett with his pain

Today's trip to the immunologist was very trying for me personally. It felt absolutely chaotic and frustrating because everyone was experiencing some degree of anxiety. That made them difficult to manage as well as very, very loud. I always find it odd how my kids can be very sensitive to sound and yet outrageously loud at the same time. Aside from the appointment and the drive being overwhelming for me, the results of the appointment were relatively positive. Just so we're clear, everyone behaved really well and cooperated as best they could. This was a big ask for them and truthfully, it went really well. It was just a lot for me. The staff loves seeing everyone and it's like their major event for the day. I was just overwhelmed…

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February 6, 2019

My thoughts

It’s going to be a very long day

All things considered, we had a pretty good day. Emmett was feeling better eariler but was miserable at bedtime. I'm hoping he sleeps through the night because we have a busy day ahead of us. It's going to be a very long day. I have to get Lizze and the boys to Cleveland for their follow-up appointments with immunology and allergy. We'll be gone for most of the day but home just in time to get to Wednesday night therapy. I'm really tired and feeling a bit stressed out but my favorite people need to be at the doctors in the morning. I'll be glad when 6 PM rolls around because I'll be about to sorta shutdown for the day. I'm counting the minutes. :-)

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February 6, 2019

Autism Parenting Insight / My thoughts / Self-Care

If that’s not how you roll then do it for your kids

There's zero part of me that wants to do anything positive for myself today. I'm feeling depressed and exhausted but if I give up control to those feelings, it becomes a very slippery slope and I'll be more inclined to do it again. Selfcare is absolutely vital, especially when it's the last thing in the world you want to do. It's not easy putting yourself first at times but it's really important that you find a way to do it. It's for that reason, as well as a few others, I'm pushing myself to go walking. Whenever I'm in a place where I just don't care about myself, I think about my kids and what they would do if I wasn't here to care for them. That's really good motivation…

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February 5, 2019

Emmett John / My thoughts / PFAPA

I’m embracing this moment for as long as I can

Emmett is feeling better this morning and that's awesome. He can't return to school today though because he has to be clear of a fever for 24 hours and he hasn't been yet. If he remains fever free at lunchtime, he'll be good. ☺ Tomorrow we will be at his specialist in Cleveland for a follow-up. This is important because his fever cycles are becoming more frequent and that's causing him a great deal of pain. We also need to discuss the possibility that he's got something called cyclic neutropenia rather than PFAPA. Frankly, aside from accuracy, I don't know if it even matters. I don't believe there's a treatment for cynic neutropenia and we know there isn't one for PFAPA. The only reason it would matter is if treatment…

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February 5, 2019

Autism Parenting Insight / Gavin / My thoughts

Gavin said something very disturbing yesterday and this is how we’re handling it

Yesterday Gavin told me something and it's really concerning for a number of reasons. I'm just going to get into what he told me and then discuss the reasons for concern and what we can do about it. Out of nowhere, Gavin approached me yesterday and wanted to tell me something. I had assumed it was about a game or something and was not paying a great deal of attention. The next words out of his mouth were "I keep having thoughts of stabbing you guys". That got my immediate and undivided attention. I remained calm and asked him to explain a bit more about these thoughts. He gave me the following example: when I'm washing the dishes and cleaning a knife, I think about what would happen if one…

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February 5, 2019

Emmett John / My thoughts

Emmett is absolutely miserable and will see the doctor this morning

Just got back from taking Elliott to school and Gavin for his blood work. Emmett has an appointment at 10:30 AM to make sure he's not dealing with strep (which is a frequent friend of his). It's a good thing we scheduled the appointment because his fever is climbing and he's over 101°F now. He's not talking because his throat hurts so bad and with the fever, it feels like maybe it's strep throat. That would explain everything but is easily treated and he should be feeling better soon. Again, assuming it's strep throat. It's so hard to know what's going on because running a fever doesn't necessarily mean anything when it comes to Emmett. He runs fevers all the time and he's not sick. When he has symptoms that…

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February 4, 2019

Emmett John / My thoughts

I’m worried

Emmett isn't feeling well this morning. His throat has been bothering him for the last day or so. He woke up in tears about 4 AM because it hurt so bad. He's not talking and may be actually running a fever. I say maybe because he's pushing 101°F but he also has a fever disorder and he runs fevers for no reason. Unfortunately, he won't be in school today as a result. If he feels better, then I'll get him there later. Emmett loves school and hates staying home. If he ever wants to stay home, something is definitely wrong. The school is working with us and Emmett is staying current with his work. His grades are impacted and we have a general doctor's note sorta covering the health issues…

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February 4, 2019