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Does anyone else give up on Google having an answer to why you’re having certain symptoms because we are too complex for Google to understand?

I’m having really bad tenderness/soreness in some really odd places lately and when I look it up it says things like “the flu” or “mono” or “stress”...yes it said stress 🙄. I obviously can’t look up tenderness/soreness in specific place while having a super rare mitochondrial disease without making Google have a stroke so I’m just giving up on finding an answer and hoping my pain goes away soon. Does anyone else relate? Gotta love being a Zebra...

#MitochondrialDisease #NFS1gene #Soreness #Pain #ChronicIllness #SpoonieProblems #Zebras #CheckInWithMe


A breakthrough

A while ago I posted about research testing and how it has helped us find out my Mitochondrial Disease is likely linked to a defective NFS1 gene. Well I got a call today from my absolute favorite person in the research department. She has been with me since the beginning of my journey. She informed me that because of the testing they did on me they are beginning to find other people throughout the country that may have the same (extremely rare) type of Mitochondrial disease as me. AND they are trying to get approved to write an article about us. Hopefully this will eventually lead to a real diagnosis, since many doctors and people dismiss research diagnosis’s until they a properly approved. Maybe even years down the road we could find better treatment.

I just had to share this with everyone, it was a really proud moment for me. My persistence has paid off, I am helping others get the answers they deserve simply by not giving up until I got my answer. If and when this article does get published I will make sure to post a link, it may take a few months though, as we all know...anything medical takes forever 😂.

#MitochondrialDisease #NFS1gene #Mito #MedicalResearch #RareDiseases #ChronicIllness #CheerMeOn #InvisibleIllness #LacticAcidosis


Today marks 1 year

It has offically been 1 full year since I had the muscle biopsy that would change my life forever. I remember feeling so scared that day. I had several panic attacks because I’m terrified of being admitted to hospitals. Months went by before I got the diagnosis, if you can call it that since technically it’s an Unnamed Mitochondrial disease.

I haven’t had much time to reflect on the past year until now. All I can really say is that I am proud of myself for surviving such a roller coaster of a year. It was full of ups and downs. Tears of many varieties; happy tears, sad tears, scared tears. Through all of these hills and valleys I have learned one important thing.

I am stronger than I give myself credit for. There have been many occasions where I sit by myself crying out of frustration because I am so physically exhausted that I don’t think I can put my pants on, or drive across town, or walk into an appointment. Looking back I have realized I always find the strength to push on. It might take me an hour to gain the strength I need but I know I can do whatever I put my mind to, it just might not be at a very fast pace.

Everyone is going through something, Everyone is hard on themselves.
Everyone needs time to rest.
And Everyone is stronger than they think.

So please, be kind to yourself.

#MitochondrialDisease #NFS1gene #CheerMeOn #CheckInWithMe #DistractMe #52SmallThings #ChronicIllness #InvisibleIllnesses #RareDisease #Anxiety #PanicAttacks #Spoonie