A Day in the Life: Caretaker/Patient & Husband/Wife

(To see the first post in this mini-series, check out When And How Dan Became My Caretaker)

Dan and I have been married for almost four years now, and together for almost eight and a half. (A sappy look at our relationship: My Personal Romantic Comedy.) When we first met, I had a few health issues, but I was relatively healthy (and quite active). Unfortunately, in the past five years, my health has started declining in leaps and bounds: it will be stable for a bit, then suddenly I’m blindsided by new symptoms and pain, then we’ll work hard to stabilize it and it will happen all over again. Through all of this, Dan has been my primary caregiver. Yes, it’s stressful, and it’s not always perfect, but it actually works relatively well for us.

dans graduation

Dan’s graduation, a month after getting engaged and only a few days before our 3rd dating anniversary!

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What Are Your Respirator Mask Recommendations?

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I’ve concluded I need a reusable respirator mask that I’ll wear more often.

The allergist that had been dealing with me (I’ve stopped seeing him for various reasons) told me to get an N95 mask to wear whenever I’m around airborne allergens – like when I’m cleaning, gardening, etc. He wasn’t entirely clear how often I was supposed to be wearing it, but it’s supposed to help reduce my permanent rhinitis and my eosinophilic esophagitis (EoE) symptoms.

My recent throat infection horribly flared up my EoE and made me realize I need something to reduce infections and filter allergens… on a regular basis. There was also a wildfire less than ten miles from my house, at the tale end of my infection, and it really brought the point home. My EoE is still completely flared up.

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A Different and Deep Depression

Looking on the “Insights” tab of my stats, it’s clear to see how little I’ve been posting. It’s also extremely clear when you look through my archive. I was looking through my archive the other day, because I’m planning out a blog overhaul (keep an eye out for changes!), and made a startling realization: my posting frequency dropped off significantly with the passing of my grandmother.

Grama and I were extremely close. She was, by far, my closest relative. Since then, I’ve been having an odd kind of identity crisis. I’ve also been struggling with a deep and different kind of depression than I’m used to… I’m used to depression, I’ve been struggling with it for most of my life, but this is somehow completely different. I didn’t even really realize that it was happening until I made the realization about my blog posting and started thinking about it.

wedding us with g&g square

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Happy Fall Ya’ll

It’s now officially fall! Yesterday was the autumnal equinox, which marks the first official day of fall here in the northern hemisphere.

One of my friends, CL, shared an interesting article on her Facebook about why fall is the only season that has two names (one thing I know I have personally wondered about many times). I thought it was an interesting, and not too terribly long, read:

Why Is Autumn the Only Season With Two Names?

Do you have a preference for what you call this season? I use both fall and autumn about equally. Sometimes I’ll even use both in the same sentence! I do really love the name Autumn, as well.

Is this your favorite season? Even if it isn’t your favorite season, what is your favorite part of the season? I absolutely love watching the trees change (so gorgeous!), the smells, the crunch of the leaves underfoot, the feeling of the crisp breeze, and hoodies!!! I also love hot tea and cozy blankets, but I get to keep those all through winter too 😉

Genetic Testing

I have decided to do genetic testing for Ehler-Danlos Syndrome, even though I know that EDS Type 3 (Hypermobility Type)  doesn’t have a genetic marker. However, when I look at the list of typical symptoms for classic EDS, I have a lot of those too, so I want to be sure I don’t have that one. I do fit EDS Hypermobility Type far better, but I want to know for sure.

So I called my rheumatologist, who had mentioned giving me a referral to a geneticist if I wanted to pursue testing. He sent a referral over to the geneticist and when I got the phone call, I find out they are the ONLY adult geneticist in the entire state of Colorado! Because of that, the wait to get in is obscene. I am on the calendar and now I’m on the wait list, just in case an opening appears.

My appointment?

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Day 3 of Digestive Distress and I am so Far Out of My Element – Please Help!

When I was trying to determine what “severe diarrhea” was defined as, medically, I couldn’t find anything. Seeing as how I have suffered from the exact opposite problem my whole life, I don’t exactly have a reference point. The Linzess says to stop taking it and contact your doctor if you have severe diarrhea. It’s to treat IBS-C. I see problems with this, in that most people that need medical intervention for constipation probably don’t really understand what qualifies. However, while I was trying to find a definition, I did find that you should seek medical help for diarrhea lasting for more than 3 days in an adult.

Today, I woke up completely exhausted, and decided to skip classes to recover my strength (my stomach didn’t hurt at 6am). Then I woke up again at 11a, and realized that my stomach hurt again and I was still exhausted. Sadly, I seem to once again have very watery diarrhea. Tuesday, when I had the watery diarrhea, was a Linzess day, and so is today. But I seemed to have adjusted to the Linzess and it wasn’t causing any problems for a week or two so I don’t know if that’s causing it or if it’s a coincidence? Ugh.

Tuesday, I had one non-watery diarrhea episode, and three watery diarrhea episodes. Yesterday, I had one non-watery diarrhea episode but could barely eat anything at all so nothing was in my system to pass through my intestines anyway. Today I have so far had one and I can tell in about two minutes I will need to rush to the restroom again for another episode of watery diarrhea. Does this count as three days? Why is medical intervention necessary after that long? I don’t have any signs of dehydration above anything that is normal for me (my lips are chapped, but they are almost always chapped; my skin isn’t dry and it is still completely elastic). I’m doing my best to drink fluids, but my belly is upset so I can’t do it too quickly or I feel like I’ll vomit. I see my GI doc on Wednesday. I just need to know  if I should be calling my doc tomorrow morning or if I might be okay over the weekend. My Urgent Care centers can give IVs, so I don’t think I’ll have to end up in the ER if i get dehydrated. I’m just worried and very confused. Any advice?

“Official Uniform of the Dysautonomia Warrior” – another shirt and two questions

 

I found a pretty and comfortable looking tee shirt! (It says it’s made out of very soft materials.) I’m thinking it’ll probably be great for lounging around the house in the summer.

What kinds of merchandise do you think will work well with this design? I have a basic sweatshirt and now this tee.

What other illnesses/conditions do you think I should make this design for? (Example: “Official Uniform of the Fibromyalgia Warrior”)

My Social Circles Aren’t That Good For Marketing

Ya’ll know I’m trying to make money from home (posts 1, 2, 3; pages 1, 2) to help with my own medical bills, upcoming student loan repayments, and the car payments we’ll need to make soon thanks to both our cars being really old. I am quickly realizing there is a small flaw in my plan: my social circles are not “direct sales” friendly. My personality isn’t that fantastic about it either, actually, since I don’t like being pushy.

Why aren’t they good for marketing purposes?

I Need Some Research Help – Possible New Muscular Symptom

Today was my Reformer for Recovery Pilates class. We started by doing a few gentle squats. When I say a few, I mean three or four. Gentle means a very shallow squat, just as far as is comfortable, and no added weight at all. I did one just fine. Then every single other one had my quadriceps (thigh muscles) burning. We weren’t holding them, we were just dipping down and straightening up. The muscles were only burning when I was in the squat position. I was barely squatting. As soon as I’d stand up, the burning would stop. The burn is EXTREMELY intense, and makes me want to collapse; pushing through the pain is almost impossible.

light squat

This photo shows me squatting (I took it just for this post) about the same I did in class. I may be a little lower than I was in class, actually. And yes, getting this photo burned really badly again, but I am currently on 1/2 a Tramadol and a full metaxalone so it wasn’t as intense. As you can see, these aren’t shouldn’t be very taxing squats.

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I Need Feedback on Dysautonomia Zazzle Designs!

I’d like some feedback about my dysautonomia design for Zazzle. I want to make more products, and I’d like to make some more designs. I’d also like to make some for general chronic/rare illnesses and fibro. I’m not super fantastic at designing, but I’d like to get better, so practice is necessary!

Can you tell me what is good about this design, or what may need tweaking? What kind of things do you think I could do to make the other designs I’d like to market? What kinds of colors should I do for general chronic or rare illness awareness designs? What other products should I offer this design, or other designs, on?


My Current Dysautonomia Design & Products

 
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