Update 112321

Hello my zebras and spoonies! thank you for coming and hanging out with me. I’m glad that you’re here.

Today I’m just going to give an update of life, the universe and everything that is me. Some backstory is that I have endometriosis and with that I’ve had a lot of pain, which has been progressively getting worse over the last five to six years. I have a Mirena IUD that I’ve been using to control the bleeding and pain. It’s not really doing the job that I need it to do anymore. It has been controlling the bleeding, but not the pain.

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The Power of Music

Music is a core part of all of humanity. Every culture across the globe has some kind of music. All of humanity: we sing and we dance and we make musical instruments. We do this by ourselves. We do this as groups. We do this in times of celebration. We do this in times of stress. We have been making music for as long as we have been documenting history and evidence suggests that we have been doing the making of music before we have been writing. So this suggests that there’s something really essential, profound and powerful about music, which is why so many people research it, because we ask this question of “why music?” What is it about music, that’s so important that every human being on the planet, engages with music, on some level? Whether you are a performer or you’re just somebody who is listening. Whether you’re singing in the shower or tapping on the table to a song in your head. We all engage in the creation and listening and sharing of music. Why is that?

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042621-1451

It could be worse

But I wish it was something better

Burning pain

Branding me, scarring me, breaking me

In all the places you cannot see

I walk through the crowd

A spector of suffering unrecognized

Looking the same as those around me

And I wonder if they feel the same

Bitter, iron bars caging around me

Biting down into my bones

Seeping into the fundamental programming

Forever altering who I am

I clutch upon the thing with feathers

That perches precariously in my soul

I wish I could hear it sing

Letting the little bird go

I watch it fly away, fly away

And with a fragile voice

Begin to sing

Getting Compression Socks

Hello Zebras and Spoonies!

Thanks for stopping by and visiting with me. Today I’m going to be talking about compression socks.

There are many medical conditions that benefit from compression therapy. Everything from blood pooling, edema, pain management and sensory needs can be helped with compression. The challenge is that our doctors often recommend getting compression socks but then we’re left solo trying to figure out which socks we should be wearing. If you’re new to compression socks, here’s my list of tips to help you find your perfect pair.

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Update 080720

The rheumatologist appointment went really well. I have been diagnosed with Osteoarthritis. That’s the best possible diagnosis. We knew I had a type of arthritis and I am glad to rule out autoimmune involvement. Osteoarthritis (OA) is inevitable with EDS-H, so I’m not surprised. It’s just a matter of mitigating the damage, just like it always has been. 

Got a referral to another doctor to evaluate me for knee braces. No idea how long the wait for that will be. 

My guts have been in revolt. Had a bowel impaction. Glad that the medications worked and nothing invasive (like surgery) was required. Bowel surgery terrifies me. Too much can go wrong. I do everything I can to keep the constipation in check so impaction don’t happen. But every now and again they still do. It’s very frustrating.  

Even more frustrating is that even though I have cleared my bowel, I am still having a lot of abdominal pain. Don’t see my PCP until tomorrow. I’m hoping for a GI consult. I suspect this is gastroparesis problems. It might be time for new interventions. Been mostly on a liquid diet and that isn’t a great option, but it reduces the pain to something bearable. 

Update 050420

The last few days have been difficult, high pain days. Had a dystonic storm on Saturday, which was an unexpected work out. In order to stop the storm, I had to take a high dose of benadryl which kicked my butt. Have been resting and trying to let my body recover.  

I haven’t been eating as well as I should and it has resulted in exacerbation of my symptoms. The stress of all that has been going on is also a factor. But I have more control over my diet then the stress. I do what I can to manage the stress levels, but there is only so much I can do in that department. However, I have control over my diet. So, I need to eat better.