Salty and Surviving

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.

02/08/2024

I really hate to do this but the costs of mine and my daughter’s non-covered treatments are building up. I have actually had to cut out some that were helping a lot like acupuncture and nedical 🍃, because haven't been able to afford. All donations go into ABLE account that can only be used for disability related expenses including housing.We were recently approved for a housing voucher to find accessible housing but need to have 1st and security about $6000. Every little bit helps. If unable to donate but want to help will be adding wishlists to my linktree and I think you can even buy gift cards for my medical dispensary and acupuncture place use I will research this. We have been struggling for past over 2 years. We had to close our dream store because of the economy. I lost my nursing career to long covid-19. Shoot most of time have lost living a life to long covid-19 but daan it keep trying to live and crush this. I desperately need accessible or even semi-accessible housing so can leave house more than my max 1x a week. My life is different now but I need the ability to live in this life treatments that have helped and accessible housing will help me and my family accomplish this. Any little bit helps. I know we are all struggling right now. Link will be posted in comments to make easier to copy and paste. https://gofund.me/83f17a6b

15/07/2024

So since my disabilities have the nerve to be super disabling during Disability Pride month. How dare they lol

29/06/2024

Zio Patch is holding on as well as my sanity does on a daily visit. Looks like a wpund vac you just got a seal on but you are securing that s**t down for deer life. Or a 3am ostomy change that you just got a seal on lol. If you know you know home health life. 4 bloofy days and already coming off. Trying to get it to stay with silicone dressing.

14/06/2024

You are one expensive human being when you have already reached donut hole in 13 days on Medicare. Thank goddess for extra help and Medicaid.

21/05/2024

You know you have pots when felt s**tty all day literally couldn't stand without almost passing out. Finally give in to do any extra 250ml bolus bag of Saline before tonights liter. When you suddenly crave more salt so you have hubby make ramen w/ adobo (can't have the packets because of maltodextrin). Literally salt in vein and salt in through mouth. There is a chance was bordering on hyponatremia. I take in 5-8grams sodium day and still can wind up on border. Now to see if sluggish Sally keeps down ramen usually 50/50 chance.

12/05/2024

Justt found out today is global ME Day to raise aware of Myalgic Encephalomyelitis ie me/cfs. You know what I just foubd out apparently today is world me day as it is Florence Nightingale's birthday. She became chronically ill from a bacterial infection and was often bedridden later in life. ME/CFS was not defined in her lifetime, but many medical historians believe she developed an ME/CFS-like illness. Honestly the me/cfs part of long covid-19 has honestly taken more from me then the complications easily quantifiable . I don't know if would be mostly bedbound if didn't have me/cfs and pem. https://www.cdc.gov/me-cfs/resources/awarenessday.html

11/05/2024

Especially after ivig and only 7 Benadryl this time.

01/05/2024

Ok knock on wood other then exhausted, mildly sore, irritable, nauseous, and intermittent low grade temp 99.4. I'm ok. I have felt way worse after a "1st" dose of ivig before. As I said I knew there was possible torture before my body gets used to it. Knock on wood no migraines, aseptic meningitis symptoms. I'm doing ok.

30/04/2024

Yesterday was a little rough with mcas please pray, energy, thoughts today is a little easier.

28/04/2024

Please pray, send energy, light candles, Reiki you name it that my IVIG with new nurses goes well tomorrow and continues to goes well. No drama, no issues, no judgemental nurses. Mallys the mast cells behave. Wonky Wilma the brain behaves no aseptic meningitis. Also please send for our family in general lots going in right now. Lots of stressors right now. We can use all the help we can get.