Category Archives: Chronic Illness

Probably Not Good

 

I’ve been having odd neurological symptoms as of late:menschliches nervensystem

  • I’m still getting regular headaches, almost daily. Some of them are rather intense, but I’m not sure if the others are low intensity or if I got used to them.
  • My arm pain is still really intense still… but a little tiny bit better because I’ve been taking Tramadol regularly. I can’t stand nerve pain like that. Unfortunately, my left arm has started to get a lot of the same symptoms (tingling, numbness, elbow pain, and neural tension). At least the left arm isn’t as intense as the right. (arm 1, 2, 3)
  • My nausea seems to be getting worse. I don’t know if that is from my nervous system or something else. (nausea 1, 2, 3)
  • The thoracic vertebra (the ones at the ribs) pop constantly, and painfully. I think my spine is compressing for some reason.
  • Muscle weakness is getting a lot worse for some reason. I’m exercising a bit more, but it feels like I’ve been exercising less.
  • My muscles burn every time I stretch them. Even if I stretch them after sitting on the couch or lying down. I don’t know why my muscles are always burning like this when I stretch them.
  • Dizziness is coming back slightly, though my cardiologist’s MA thinks it might be from my body adjusting to the fact that my resting heart rate is now in the upper 60s now that it’s controlled.

As you can see, troublesome. Continue reading →

How to Clean with a Moderately Severe Dust Allergy

I’m allergic to dust. Yes, you read that properly, dust. Everyday house dust. (Read post 1 and 2 about this allergy.) As you can imagine, this makes things very complicated. Doctor’s orders say I’m supposed to stay away from dust, especially airborne dust, which also means keeping my house as dust free as possible. Do you see the catch?

Cleaning is very complicated due to the dust issues. First of all, let me emphasize the importance of good air filters if you have a dust allergy or sensitivity. Air filters are CRUCIAL!!! They are also necessary when cleaning. airfilterI have two different types of air filters, three filter units total. I have two Winix True HEPA filters, and love them. After we got them, we cleaned thoroughly, and it took significantly less time for a dust layer to accumulate. They also automatically sense air quality and will adjust the fan speed as necessary (if on “auto”) and can be put on a quiet “sleep” mode for overnight. We have one Winix on the main level of our house, and one in our bedroom. We also have a small Holmes HEPA mini-tower air purifier (I bought it from Target about 5 years ago). We buy the best filters we can for the Holmes, and it runs 24/7 in the office. All the air filters run 24/7. I’m not getting anything for these links, but these are the ones we use and I definitely recommend the Winix ones.

How to Clean and Dust Your House When You’re Allergic to House Dust

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Cute Compression Socks on Sale!

This is not a sponsored post… I just love fancy socks.

RejuvaHealth.com is having a small sale! They have a coupon code too: CELEBRATE. The code takes an extra 10% off, even sale products! I just bought three new pairs of compression socks, and I’m super excited about it. I love my socks!

rejuvahealth sale

I got the Chevron Slate socks, Rose socks, and the Sheer Floral knee highs. I’ve been stalking their sale page in hopes of finding some of their medium strength (20-30 mmHg) socks. As you can probably see, I got two pairs of the 20-30 mmHg socks, and another pair of the 15-20 mmHg. I have two pairs of the 15-20 mmHg, and they’re great for light compression on a daily basis. I can’t wait, however, for the stronger ones for when I go do things where I’ll be on my feet more!!!!

(I’m still working on a styling post, by the way. As it turns out, I don’t fit a lot of my clothes that I want to wear them with. Hopefully, summer will yield more styling options.)

Why Does It Take So Long To See Doctors?!

Seriously.

Why?!

Good news is, I have an appointment setup to see a neurologist that specializes in neuromuscular disorders but works in an office with other neurologists that specialize in other things like MS and vascular neurology.

The bad news is, the earliest appointment is for February 26th. But better than never.

Good thing I have plenty of Tramadol and metaxalone.

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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Unexpected Perspective Shift

I don’t believe in failure
Cause I know the smallest voices, they can make it major

-from “Seven Years” by Lukas Graham-

I heard this song for the first time today. I was in the car, driving home from school. This song is a really good song, with a unique beat and beautiful, heartfelt lyrics. The DJ had compared it to the “100 Years” by Five for Fighting. I wouldn’t put it quite at the same level, but it’s very similar in a lot of ways. But this specific quote really struck me at the time. I just watched the video a second time and didn’t notice it as clearly. Obviously, it was one of those things I really needed to notice at the time.

Click Here to read how this quote shifted my perspective

A Little Scared and A Lot Worried

I just got back from my Monday appointment with Joleen. I finally decided, after the scary emotional swings this weekend, to fully disclose the full pain in my arm (I hadn’t really been hiding it consciously, I think I was mostly lying to myself). There were several episodes this weekend where the pain in my arm got so bad it pushed me to tears.

After talking with Joleen, and explaining everything, she seemed worried. I don’t like when my doctors get nervous. But, she is right. Normally, when my body randomly acts up, it just takes a few weeks to get it back into sync again. My arm pain came out of no where. I didn’t do anything, and it suddenly was killing me. We’ve been stretching my nerves, trying to release the tension, and rubbing out the knots for several weeks… and we haven’t made any progress.

If anything, I seem to be slowly getting worse…

New Symptoms or Just a Bad Day?

I’ve had some really bizarre emotional things going on today. Physically, I’m not doing too well either, but that is due to the weather suddenly shifting again (I hope).

I guess we’ll start at the beginning.

monday skiing 04

Me skiing at Beaver Creek.

We wanted to go skiing today. My arm has been killing me, and last night it randomly got really bad, pushing me to tears several times. No idea why, because I’ve been doing what I’m supposed to (exercise wise). We set an alarm for 5:45am (to get up there by the time the lifts opened), but we also had the condition of “we’ll see how you feel” (meaning how I felt, Dan said it). At 5:45, Dan asks how I’m feeling, so I had to lay there and force myself awake long enough to do a self assessment. Then I moved and pain shot through my arm. Not good. I told Dan and we decided not to go skiing.

That, as it turns out, was a phenomenal decision…

New Post Type – Making Money as a Chronic

As any Chronic will tell you, holding down a regular job can be almost impossible. Unfortunately, we’ll also tell you that medical bills add up scary fast (at least, those of us that live in the US, I can’t speak for other countries). Isn’t that a pretty puzzle? Getting disability pay can be almost impossible, especially if you aren’t qualified as “disabled” but just can’t hold down a job without pushing yourself into that category.

medical-bill

Just pile them on folks!

My body just can’t handle work. I worked in retail for a few years, prior to most of my diagnoses, and ended up getting plantar fasciitis so badly that I couldn’t walk without crutches and excruciating pain. I worked reception at a vet office, only to discover that even with the proper shoes the plantar fasciitis sucked AND my allergies decided to put my immune system on “emergency plane crash” mode. I went back to my retail job, and thankfully didn’t have too many issues with my plantar fasciitis. I also nannied, which were crazy long hours and way more spoons than I wanted to use in one day (I was doing the retail and nannying at the same time, so I was probably working over full time). Finally, Dan said, “Stop hurting yourself” and I felt like I was allowed to stop.

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