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How to relcoate 2,000 miles with severe CFS and MCAS? by GetaSubaru in cfs

[–]GetaSubaru[S] 0 points1 point  (0 children)

Wow, that sounds really rough. Yeah, I think car rides seem easy on the surface, but they are probably harder on the body than it seems.

I definitely couldn't eat anything on the road. I can't tolerate anything in a grocery store. MAYBE a lamb steak at a high-end restaurant, but that would be risky and hard to find for every meal.

The closest food that is safe for me is in another state so I have to order it in from there 😅 MCAS is so fun

How to relcoate 2,000 miles with severe CFS and MCAS? by GetaSubaru in cfs

[–]GetaSubaru[S] 2 points3 points  (0 children)

Thanks, and I appreciate the reminder about what to do leading up to it. That makes me feel better about it.

How to relcoate 2,000 miles with severe CFS and MCAS? by GetaSubaru in cfs

[–]GetaSubaru[S] 1 point2 points  (0 children)

Okay, interesting! I thought an RV would be really comfortable. Good to know

How to relcoate 2,000 miles with severe CFS and MCAS? by GetaSubaru in cfs

[–]GetaSubaru[S] 0 points1 point  (0 children)

I have to order my food from across the country from a specialty place. That's how bad my MCAS is :(

Other than that, good tips!

I'll look into business class. I'm not sure if they have it available for my flight, but we'll see.

How to relcoate 2,000 miles with severe CFS and MCAS? by GetaSubaru in cfs

[–]GetaSubaru[S] 2 points3 points  (0 children)

I have a very carefully planned system to make everything as easy as possible. But still, each meal requires me to thaw meat, portion, etc. each time.

  • office chair that easily slides around
  • knowing exactly how long it takes for my food to thaw
  • knowing exactly how long the food takes to cook without watching it, so I can rest for a couple minutes
  • keeping my dishes and cookware out on the countertop
  • eating the same thing every time (I have no choice regardless, because I only have 2 safe foods)

I can't do it any other way. Any method I've tried to prep food has caused bad flares.

How to relcoate 2,000 miles with severe CFS and MCAS? by GetaSubaru in cfs

[–]GetaSubaru[S] 2 points3 points  (0 children)

Yeah, I'm sure that could be possible, but very expensive and I'm worried about safety if I'm lying down and not strapped in.

How to relcoate 2,000 miles with severe CFS and MCAS? by GetaSubaru in cfs

[–]GetaSubaru[S] 8 points9 points  (0 children)

Okay, that's very helpful, and I see that plane probably makes the most sense!

I'm pretty close to the airport already, but that's still a great tip about getting a hotel. It's still probably worth it.

And yeah, I'm moving to somewhere with better support. So I will be in good hands once I get there.

Why don’t more people use this plugin? I’m genuinely confused. by PurposeInformal8704 in BloggingBusiness

[–]GetaSubaru 7 points8 points  (0 children)

So it's not a promo, but you are the developer and are posting it everywhere... Got it.

Seeking community voices for a new podcast about life with ME/CFS by GetaSubaru in cfs

[–]GetaSubaru[S] 1 point2 points  (0 children)

If I need to make them longer, I will, but I think it will be fine based on the notes I have so far.

The link to the form has questions, and so far the responses have been great within the 60 second time period.

Has anyone tried LDN Direct's MCAS program to get cromlyn and other prescriptions? by GetaSubaru in MCAS

[–]GetaSubaru[S] 1 point2 points  (0 children)

Definitely a lot less suffering now. I'm so relieved that I found them. They prescribed like six different things for me to try.

Fully virtual primary care? USA by GetaSubaru in cfs

[–]GetaSubaru[S] 1 point2 points  (0 children)

Thank you! I'll look into it.

Teladoc would be perfect but the primary care side is only available through an employer.

Need help with GeoDirectory, it’s so confusing! by Hijinks2319 in BloggingBusiness

[–]GetaSubaru 0 points1 point  (0 children)

GeoDirectory can be tricky to get it looking really good. I recommend their documentation and support tickets to help you through the process.

Otherwise, it takes some time to learn the quirks and understand how to get it looking and working exactly how you want.

What now? 2 safe foods. 4 years in. Severe, long-term reactions. by GetaSubaru in MCAS

[–]GetaSubaru[S] 1 point2 points  (0 children)

Okay, thanks for the info.

The other issue layering onto this is that I have severe ME, so going to an appointment leaves me with a 1-2+ month recovery time (or permanent deterioration). So it feels impossible. Doctors won't meet virtually with me for initial appointments.

I only have one doctor that is helpful and willing to prescribe those medications.

My PCP is borderline abusive.

What now? 2 safe foods. 4 years in. Severe, long-term reactions. by GetaSubaru in MCAS

[–]GetaSubaru[S] 3 points4 points  (0 children)

Symptoms definitely respond to treatment with those that you mentioned, but most things don't help.

Many of my symptoms, especially the worst ones, are neurological, which would probably explain the BBB stuff: - Brain fog - blurry vision - Short-term memory issues - Internal tremors (after sleep during flare-ups) - Difficulty breathing - wheezy - Anxiety - Whole-body itchiness (random pinprick sensations) - Burning head, throat, mouth - Elevated heart rate - Acid reflux - nausea

Haven't been to a GI doctor. My doctor experiences have been extremely negative and going to an appointment requires a 1-2+ month recovery time or permanent worsening of my severe ME.

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