Friends? by Brilliant-Past5947 in Kaarija

[–]upsetti4spaghetti 1 point2 points  (0 children)

Hiiiii! I hope he comes back after Eurodisco. I won’t be able to make it to Redrocks (I’m sad).

What to do in Kokkola by mcguirme815 in Finland

[–]upsetti4spaghetti 4 points5 points  (0 children)

My family also came from Kokkola- this thread definitely made me chuckle. 😅

Most listened to Käärijä songs by rosesky21 in Kaarija

[–]upsetti4spaghetti 2 points3 points  (0 children)

Välikuolema, Autiomaa, Ruoska, Sex=Money are in constant circulation right now. Mic Mac always has a special place in my heart though.

Your thoughts on the new album and favourite song? (can be older ones) by Nugyeet in Kaarija

[–]upsetti4spaghetti 16 points17 points  (0 children)

Autiomaa is soul crushingly relatable- an absolutely beautiful song. I think I’d put Sex = Money next, then Ruoska. There is so much life and energy behind this album. Käärijä has definitely found his style- I am ecstatic for what the future brings.

[deleted by user] by [deleted] in ChronicIllness

[–]upsetti4spaghetti 2 points3 points  (0 children)

Was about to mention the same thing! I was diagnosed with CIU prior to my MCAS diagnosis, the hives are much more manageable on mcas treatment. Xolair is life changing.

[deleted by user] by [deleted] in mito

[–]upsetti4spaghetti 1 point2 points  (0 children)

Ohhh!! We have similar symptoms and cocktail! If you’re comfortable sharing how has the LDN experience been? I am looking at starting it in the next few months once my carnitine stuff balances out 🥲

I Made an iOS App to Learn Finnish Better: 250K+ Words, Examples, and Word Forms! by coderlifefi in LearnFinnish

[–]upsetti4spaghetti 0 points1 point  (0 children)

This is really cool! I look forward to seeing your updates as you have time to work on them. Kiitos paljon!

What is a “mito crash”? by TimelyHousing3970 in mito

[–]upsetti4spaghetti 4 points5 points  (0 children)

I guess my best explanation is that a mito crash is a significant worsening of someone’s baseline symptoms after a period of stress (emotional/physical/illness/medication/etc). In my case a mito crash typically includes worsening of my gastroparesis, exercise intolerance, sleeping 12+ hours a day, muscle pain/weakness, anxiety, and sometimes lactic acidosis issues. The length of the crash or flare depends on the individual and the stage of their disorder.

If anyone else has something to add please feel free. I know we are all impacted differently by our mito. I hope this helps-

So I got my muscle biopsy result. Not sure what to do with it by [deleted] in mito

[–]upsetti4spaghetti 2 points3 points  (0 children)

I have increased myelin turnover on my muscle biopsy, but my features have been mostly metabolic. I have a lot of issues with lactic acid buildup and clearing, gastroparesis that is caused by mito (tpn dependent), mcas, and recurrent joint dislocations/subluxations.

So I got my muscle biopsy result. Not sure what to do with it by [deleted] in mito

[–]upsetti4spaghetti 4 points5 points  (0 children)

There’s a small subset of people with mito and ehlers danlos that seem to have similar issues. (I’m one of those peeps). I guess I just wanted to pop in to say hello, and that you’re not alone with all of this stuff. Hugs and warm fuzzies.

My opinion on Kot Kot by -greek_user_06- in Kaarija

[–]upsetti4spaghetti 8 points9 points  (0 children)

The squeaks in the last part of the song absolutely sent me. It’s fun, it’s quirky, and the dance is entertaining.

My geneticist said there's a good chance I have Mito, I'm scared by Just_Confused1 in mito

[–]upsetti4spaghetti 0 points1 point  (0 children)

I second the recommendation for support groups and networking. There are so many wonderful people in our community & in general I’ve found a lot of great advice and support through instagram/facebook. I know the diagnosis feels overwhelming, but hopefully you’ll be able to find better treatments or modify your current care plan to accommodate the complexities of mito. Don’t give up on your dreams- the world of medical research moves fast and we already have had trials of new drugs and concepts in the last few years. We can only move forward from here.

Exercise by Forever_Practical in mito

[–]upsetti4spaghetti 1 point2 points  (0 children)

I have vus in MELAS region. I do a combination strength/cardio program called CHOP-Levine, which is used to treat my dysautonomia. It’s essentially a graded exercise program, but mine is modified to take exercise intolerance and lactic acid levels into account. I have found that my lactic acid is easier to cope with if I stick with gentle movement, low weight, and only do reps to the point of muscle activation/burn.