Salty and Surviving

Salty and Surviving Disabled RN mom LC survivor w/ me/cfs dysautonomia pots mcas gp/gi dysmotility inflammatory sfn IVIG

10/09/2026

Answering some questions for thlse that wonder why we ended up collecting diagnoses like rare shiny Pokémon. It's because they are all interconnected and usually related to small fiber neuropathy, possibly autoimmune/Autoinflammatory, etc. hEDS/HSD, EDS and other related CTD's often involve faulty collagen these systems need collagen to support their functions. Research literally takes a couple minutes. Before fake claiming someone because they have too many diagnoses do some research they are all interconnected.

02/09/2026

WTF is wrong with humanity. Laughing at long covid on someone it us trying to kill almost every day. I can show you my lung hr ct so you can see long lung damage but you wouldn't care bc if you don't have it. It isn't real. Well my organ damage is real. My brain injury from encephalitis from post covid-19 is real. Honestly I just remove and block but also remember Karma is a Bi$ch.

30/08/2026

Part 2 ME/CFS kills. Ways it kills pulmonary htn, heart failure, rhabdo, aki, dehydration, malnutrition, lack of care, medical neglect and abuse, inability to get to appointments, providers lack of knowledge to disbelief, neuroinflammatory/immune attacks/conditions, infections (severe immune dysregulation to compromise), systemic inflammation to organ injury, psychopathogizing limiting treatment, and honestly 25% the big S because nobody and I mean nobody would choose this fu***ng life. I stay alove for my husband and my kids and some friends that it. Why would we want to when you all have proven what you all think of us? Why would we want to continue to fight for care when we have to fight for every tiny sliver. Just get a feeding tube you bloody try. TPN great that eventually kills your heart, kidneys, liver. Try getting palliative care to help or anyone depending on area you live. If I was to lose my autonomic neurologist, autoinflammatory rheumatologist, or my p*p I would probably die because my life sustaining treatments would be taken away. Shy 💜 & Service dog Hero 🦮

28/08/2026

Update on Kineret/Anakinra and stuff. Sorry haven't posted in so long. So much going on. I think of my friends on here often. My me/cfs was so severe almost very severe for months. All these appointments. I am tired. .

28/08/2026

Update Kineret Anakinra is going well. No voice after fighting with transportation company and medicaid insurance. I think it is fixed we shall see. Kineret is mostly going well especially neurologically wise just the joint pain which could be disease process itself. I got my haircut I'll post a picture later pulled every muscle sitting up for that. Next on list is SI joint injections in November 1 SI joint at a time.

August is Severe ME/CFS to Very Severe ME/CFS so I went for Brain MRI yesterday ended upon a severe Paroxysmal Sympathet...
08/08/2026

August is Severe ME/CFS to Very Severe ME/CFS so I went for Brain MRI yesterday ended upon a severe Paroxysmal Sympathetic Hyperactivity episode with sustained 120's- 160's hr yesterday this was with stretcher transport. Ever since new covid-19 and then 5 months later (I didn't know all the neuroinflammation and systemic inflammation was just smoldering), I overexerted over 2 years ago to attend my son's college graduation and caused a severe neuroinflammatory and systemic inflammatory attack including Seronegative autoimmune encephalitis and multiple organ inflammatory attack on my body this is the risk every time I overexert. Then this last November through Feburary status dystonicus from later developed osteomyelitis, discitis, phlegmon we believe from inflammatory attack and back strain and hidden infection (? Lung nodules). The point is I can only leave my 4 walls my 20+ hours bedridden for medical appointments and even with stretcher transport that is a risk for over 2+ years. I now have to attend Rinoa's appointments by video if you ever met them you know anything medical is both Greg's and Rinoa's biggest demand avoidance so this is fun for all of us. I am trying to manage what I can from bed which most of time I do ok but when have one of my 2 days to week or more barely conscious very severe me/cfs from pushing then it all falls apart. Greg is trying his absolute best but 2 Autistic kids and his wife he worries about what brain or body insult will finally take her out is too much nevermind being my full time caregiver. IVIG helps. I just started a very painful but worth it biologic that crosses blood brain barrier. I keep hoping and trying to get better. Meds, IV fluids help but nothing brings back functional abilities each post exertional malaise and more specifically post exertional neuroimmue excerbation causes. I can lose more functionality by doing one too many bed exercises what is most recent flares issues. We need to get rid of chronic fatigue label once and for all. It is Myalgic Encephalomyelitis it is a severe neuroinflammatory neuroimmune attack and in my case systemic inflammatory attack thanks to Yao.

Rare Patient Voice is an amazing resource to make a little extra cash and participate in research. They are currently l...
05/08/2026

Rare Patient Voice is an amazing resource to make a little extra cash and participate in research. They are currently looking for Migraine suffers for web based interview for 60min $120. Please use my referral code The Details:

Who: Patients living in the US with Migraines
What: 60 Minute Web-Assisted Telephone Interview
Compensation: $120 for your time!

Refferral Code https://www.rarepatientvoice.com/rp/SaltyandSurviving
Will be in comments too





20/07/2026

Injection routine and how I manage multiple subq injections. Forteo Sq in am thighs, Kineret evening abd, Ozempic weekly abd, Dupixent q2 weeks Back of arms. Then IVIG weekly 8 ish hours usually Thursday. IV fluids 3-4x a week. I can do this if it makes me better.

09/02/2026

I just don't want to do this anymore. I will buy fighting for care shouldn't be this hard. I am so fudging tired. I won't do anything. I am trying to figure out smartest way. Why couldn't they have done 3 more weeks of IV abx I was making huge gains. I am tired. I had 3 psh episodes (ie torture 106 neurogenic fevers) last week. Like dystonia storms/crisis status dystonicus it is a sign that inflammation is setting off my cns. Why won't people listen to me. Anyways pray for me 3 weeks of 2 appointments a week 2 of them back to back. Neurosurgery the one that dismissed me 1st now only one taking me seriously. I am just tired. So tired spiritually, emotionally, physically.

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