Fine. I’ll do it this way.

This summer has been one of continuously not getting my way health wise. The heat and humidity when the good ole mid Atlantic summer started sent me crashing down like Icarus. Things were starting to turn the bend and then I caught a cold …

Autoinflammatory Disease + actually being sick = totally unhinged & haywire immune response.

Since with Autoinflammatory Disease the innate immune system is directly acting up and attacking my body any legitimate sign of invasion? Oh it’s game on for my innate immune system, starting with literally turning up the heat … I’ve been averaging a daily fever of

101 far too often the past few weeks.

I can’t do things the way I want to. Things like writing this post.

I usually need to be on my back with my head propped up a bit. My fingers have been super stiff with swollen joints on and off so my keyboard and I are also not friends at the moment. I’m stubborn about some things. Writing my posts on my computer is well one of them.

Even though I’m constantly writing often very long and detailed responses with links and everything on the Facebook groups app on my phone. Yeah, which is a much less friendly interface for writing long things.

So I’m stubborn and dumb. Right now I’m really trying to come to terms with that, since it is the only way my quality of life is going to improve.

I need to be willing to compromise with my body. Find ways to do the things that matter to me in a way my body can handle it whenever possible. I have to do that since so often these days it’s not possible.

I was writing in one of my Lupus groups about how I’m working on staying motivated with cleaning my room. I’m used to be able to be active for at least 30 minutes at a time fairly regularly. Now days out of the week I get maybe 15 minutes at a time. Like with writing I get stubborn. I want 30 minutes.

I want my entire room clean right now, like a few months ago I could reorganize and clean the whole thing in oh 90 minutes. Not a lot of hard labor to it, not a lot of space.

Right now that’s too much to ask my body. I need to settle for getting together small parts of my room every few hours at best. That’s what I’ve got.

But hey, look I wrote a coherent post on my phone. It was easy, took up a lot less energy than using my computer. That’s cool!

Also huge props to the Lupie’s who always kindly let me crash at their pad. The Systemic Autoinflammatory Disease world is very small. Our groups need to stay focused on research, symptom & disease identification, treatment navigation. I can’t get support for things like how to clean my room when I’ve got nada. So thank you to my Lupus cousins for being so understanding and accepting their zebra relative 🙂

Featured image: “Trapped” by Taylor Dawn Fortune1

Answers.

I haven’t posted in awhile since I decided to take some much needed time to rebuild my personal life. I haven’t had much of one since first becoming ill 3 years ago and at that point my personal life had some hard knocks due spending the prior two years dealing …

Ordeal and Surrender

I’m involuntarily taking you on a journey, the same one I’ve been on. It will wind, it will seem pointless at times, though I believe it’s worth it. Ordeal reveals naked truth. It comes through pure vulnerability and surrender. It’s all a …

Grassroots All Stakeholders Healthcare Action Proposal

Please get the link to this page out there. We want all in for this all included project.
The Short Link for this page: http://bit.ly/gashprop

Drafting is occurring on Google Doc feedback welcomed!

Short Link: http://bit.ly/gashdoc

Grassroots All Stakeholders Healthcare
Proposal
By the Chronic Advocate aka …

Understanding Meniere’s & Going Bilateral

Meniere’s Awareness mug by Infinity Creations Company

I’ve been dreading and avoiding writing about this, since well it’s always been my Meniere’s worst nightmare. I’m pretty sure I’m not alone in that, I think most of us with unilateral …

Provider perspective on barriers to improved patient engagement

image source dailykos.com comics

I was thankfully able to catch the MEQAPI chat today, and I ran across the same problem that I typically do in these improving healthcare and patient involvement chats. Healthcare is a nasty and complicated …

How I switch into disability gear

I’ve been VERY busy. Since it became clear that I need to go back on disability I’ve been very busy switching gears. I hope some of what I do when I go on disability will be helpful for some of you out there going …

Rolling with resistance

Yesterday my world collapsed, and yet everything is where it needs to be. My work doesn’t think I am well enough to fulfill my job duties. I can’t disagree with them. My health is just continuing to deteriorate, and I’m not much closer to any sort of answer or treatment.

I …

Acclimation and Adapting

Earlier this month I realized that I had not really had much improvement in my symptoms after months of antibiotics, I had simply just acclimated to them. I think my fatigue has improved some, though when I looked at the full picture my condition had actually worsened. I had simply …

3am ramblings

My ear decided about an hour ago to start threatening another Meniere’s attack. Between the anxiety that creates and the discomfort sleep is awhile off. I’m trying to just get back into blogging and reconnect. It’s hard because bad news and a bad mood is not something I like to …