Salty and Surviving

11/05/2025

For people who are anti-DEI. This right here is DEI. Being able to go to my son's graduation without getting hurt qnd independtly as possible with my disabilities. Being able to advocate for others. Hoping to help the school to become more inclusive. I had an all terrain wheelchair there is no way a regular w/c could get to the places needed on campus. You want to get rid of disability and exclusion offices who would I have reached out about these issues. Yes I could file an incident report with school safety then let's be honest nothing would have happened unless I costed them money. Being anti-DEI is being anti civil rights, anti disability rights, anti women, anti pregnant women. DEI is about disability, equity, and inclusion of all Americans.

10/05/2025

I think I can do this. IV fluids last night. PRN IV fluids packed. Started Baclofen 2.5mg for the spacitity and dystonia and what do you know post exertional malaise better when not in constant spasm. Fans, sun hat, neck brace for car ride, ADA parking pass, meds, electrolytes, rescue meds, emergency binder in case something God forbid happens, of course Wheelie. I have worked so hard to climb out if flare from research visits to make it to Tyler's Graduation. I am so very proud of Tyler. Thank you to everyone who made this possible.

22/04/2025

Recover Energize Trial screening visit. Next week initial visit.

06/01/2025

So looks like my Normal Yao Syndrome and Long Covid-19 crap and not Covid-19 rebound. Have another 8 days minimum before can restart Sulfasalazine. Makes sense now that folliculitis is back and dermatitis looks like crap.

05/01/2025

Tested Positive for Covid-19 on Monday 12/30/2024. Started on Paxlovid that evening. Had to hold so many medications. Tested Negative 1/4/2025. IVIG and last dose of Paxlovid 1/4/2025. So far much better than last time. It didn't try to kill me this time. Now to pray either part of people who get better after covid-19 long covid-19 wise or stay the same.

16/11/2024

Dude WTF man why not lol?

16/11/2024

30/10/2024

30/10/2024

Why does every new rare shiny Pokémon bring this grief? Like treating this could be the answer to many of my issues and get me some bloody quality of life. We already treating the inflammatory sfn. I can eat some again. I was already saying I had some sort of autoinflammatory condition and now I am almost in tears because why another bloody rare disease and at same time relief to finally have someone listen to me on this so it can stop tearing my body apart. Maybe it's all so much in 2 days official diagnosed with bloody osteoporosis and prescribed medication for osteoporosis at 43 years old and then get answers been fighting for before even long covid-19. Why are rheumatologist so quick to say fibro? Don't even look at autoinflammatory conditions which are their own entity. And don't check for small fiber neuropathy which between 50-60% of people dx with fibro actually have. They spent 10+ years trying to just slap a fibro dx on me. Where would I have been if someone took the time 10+ years ago to put everything together. It just happened to be me running my "fun" genetics and research genetics through various programs who happened across it. Then spent 3+ years trying to find someone to officially test for it and be willing to do something for it.

30/10/2024

Starting to get some answers. Starting medications for Yao's Syndrome. 1st Fosamax for osteoporosis amd compression fx then Sulfasalazine.

09/08/2024

Please sign. Disney is discriminating against kids and adults with disabilities that make it impose to stand in lines just because their disability isn't developmental. They blame people for abusing system but Universal found a way. Why can't Disney. https://www.change.org/p/stop-excluding-disabled-people-from-disneyland-and-disney-world-with-new-policy/exp/v2/cl_/mit-490007969-10/v3/2061927?recruiter=2061927&recruited_by_id=ac7e2080-c3ac-012f-5c3f-4040f855b16c&utm_source=share_petition&utm_campaign=psf_combo_share_initial&utm_term=take_next_step&utm_medium=copylink&utm_content=mit-490007969-10%3Av3

02/08/2024

It has arrived finally. Really hoping this will be game changer for my pots and autonomic dysfunction.