15/07/2024
So since my disabilities have the nerve to be super disabling during Disability Pride month. How dare they lol
Salty and Surviving
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Disabled RN mom LC survivor w/ me/cfs dysautonomia pots mcas gp/gi dysmotility inflammatory sfn IVIG
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.
27/06/2024
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.
21/04/2024
Unfortunately so true. I really need to learn to just say I'm fine. People really don't want to know.
06/04/2024
Home dead so much pain but so worth it. Took 2 fake energies, liquid IV, lots of friends but made it. Thank you Mary Daisley for the Reiki helped me make it up the stairs. So sad can't be there tomorrow but there's no way but so grateful made it for today. It was so amazing seeing our Pagan/Vendor family. Wishing each and everyone of you an amazing turnout tomorrow.
06/04/2024
I'm going to The Magickal Marketplace & Psychic Fair today for couple hours in afternoon will use fake energy, loop ear plugs, and Wheelie but if don’t hear from me for 3-5 days that's why lol. Can't wait to see everyone so worth it. Wouldn't miss it for world.
01/04/2024
16/03/2024
Dude all of this. I am just so bloody tired boss.
16/03/2024
Ok who took this picture of me. Confess lol.
16/03/2024
Please pretty please lol
16/03/2024
All the bloody time. Just getting dressed registers as a marathon.
03/03/2024
The CDC has nevered cared about anyone but being the hurry up and get people back to work center. They treated us health care professionals as disposable work sick in trash bags and now f**k immune compromised, elderly, and disabled. Did you know with each covid-19 infectionyoyr fisk if joining our reins increases. Tge CDC has never cared and never will. Take care if yoursel because nobody else will. They don't care. Reposted@withregram • How long are you contagious with COVID-19?
Here's what the science says:
➡️ Most people are infectious for ~10 days
➡️ ~80% of people test positive for 5 days after symptom onset
➡️ Only ~30% of people who test positive have a fever
➡️ Presence of symptoms is an unreliable indicator of infectiousness
➡️ Individuals can be infectious before the onset of symptoms
➡️ Asymptomatic cases represent around 20 to 40% of all infections
The best way to tell when you are not infectious anymore is to have consecutive negative tests for COVID. And if you are unable to stay home the entire time, please wear an N95 mask to prevent spreading the virus to others.
Sources:
Nat Rev Microbiol. 2023 Mar;21(3):147-161
JAMA Netw Open 2022;5(10):e2235844
01/03/2024
Here's hoping
28/02/2024
Both my MA and NH RN licenses renewed. Didn't know how bloody triggering this was going to be. There are so many unknowns. Will I ever be able to be any kind of nurse again? I am just not ready to let go of this part of me yet.
27/02/2024
My ride is here lol 😆 😄 🤪 ☺️ 😌
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Priscilla the port has risen and is working again unfortunately so hasn't mu gastroparesis. Corlanor Oral Solution maybe on way soon. Things looking up I think. #homeinfusion #ivig #iviginfusion #asepticmeningitis #portcare #portacath #salineinfusions #ivport #longcovid #longcovidrecovery #longhauler #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #vocalcorddysfunction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis
100.6 tempature this am, swollen lymph nodes, swollen joints, hands, fert ankles. Corlanor Oral Solution should be here by Friday. Rinoa has autonomic testing tomorrow. Acth stim testing Wed for me. Echo for Rinoa Thursday. #homeinfusion #ivig #iviginfusion #asepticmeningitis #portcare #portacath #salineinfusions #ivport #longcovid #longcovidrecovery #longhauler #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #vocalcorddysfunction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis
Updates the hunt for either new generic tablet or Corlanor Oral Solution. New cpap adjusting too slepted like crap last night. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
Me/cfs is a very lonely "alone" disease. Nothing like being letdown and abandoned by healthcare once again. Sometimes I wonder if the medical trauma is worse then the crap I survived as a child. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
Me/cfs, long covid-19 ramblings. Advocating for more caregiver hours. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
IVIG today self administering 40G/400ml. This lot is a lot smoother. Should be done around 430pm. #homeinfusion #ivig #iviginfusion #asepticmeningitis #portcare #portacath #salineinfusions #ivport #longcovid #longcovidrecovery #longhauler #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #vocalcorddysfunction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis
This is me/cfs. How dare I wash and brush my hair. Now I can't sit up or stay awake. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
Updates on everything. Tolerated 40grams 1x a week max rate 60ml/hr. Getting some of the fluid weight off. Exhausted. Need help managing everything. #homeinfusion #ivig #iviginfusion #asepticmeningitis #portcare #portacath #salineinfusions #ivport #longcovid #longcovidrecovery #longhauler #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #vocalcorddysfunction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis
IVIG on my own after tomorrow. I think just more angry at lack of communication. #homeinfusion #ivig #iviginfusion #asepticmeningitis #portcare #portacath #salineinfusions #ivport #longcovid #longcovidrecovery #longhauler #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #vocalcorddysfunction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis
Mr. ED is rearing it's ugly head. My non-p*rging b*limia is killing me. First LC and GP made it so lost weight zero control of my own and now I am gaining limited control of my own. Have intake call tomorrow with Equip a virtual Mr. ED clinic. Why do we have to talk in code words this is ridiculous? #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #edrec0very #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
Be careful whatcha wish for. Be careful what you say to people. I maybe doing my own ivig soon. Unsure how I feel about it. #homeinfusion #ivig #iviginfusion #asepticmeningitis #portcare #portacath #salineinfusions #ivport #longcovid #longcovidrecovery #longhauler #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #vocalcorddysfunction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis
Updates... Slowly coming back to world of living. Starting to tolerate Gammagard IVIG max rate now 60ml/hr. Still 2 days a week. Making sure everything is ok w/ heart before increasing more. So busy with appointments for myself and family. Able to leave house 1 day a week w/ moderate difficulty and some crashing. #homeinfusion #ivig #iviginfusion #asepticmeningitis #portcare #portacath #salineinfusions #ivport #longcovid #longcovidrecovery #longhauler #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #vocalcorddysfunction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis
Bathlift has arrived now to name it. Wow I knew it would be big and pita to get in and out of tub but it is causing me to feel another way. Here is another "joy" taken away so I can be safe. Yes this make baths safer no more compression fractures hopefully or getting stuck. I don't know weirdly feeling some type of way. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
Late post from 5/31/2024 Starting to tolerate IVIG. Gammagard PA approved did it myself. Adjusting still taking a lot out of me. #homeinfusion #ivig #iviginfusion #asepticmeningitis #portcare #portacath #salineinfusions #ivport #longcovid #longcovidrecovery #longhauler #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #vocalcorddysfunction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis
Will have to make video on this OptionCare fiasco later. But finally everything is all set for nursing next week. Wasn't going without so did myself with caregivers around in case of anaphylaxis #homeinfusion #ivig #iviginfusion #asepticmeningitis #portcare #portacath #salineinfusions #ivport #longcovid #longcovidrecovery #longhauler #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #vocalcorddysfunction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis
4th week of IVIG in the bag. Not to shabby. Some flaring but getting better. #homeinfusion #ivig #iviginfusion #asepticmeningitis #portcare #portacath #salineinfusions #ivport #longcovid #longcovidrecovery #longhauler #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #vocalcorddysfunction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis
IVIG week 3 completed. Just wiped but doing ok. #homeinfusion #ivig #iviginfusion #asepticmeningitis #portcare #portacath #salineinfusions #ivport #longcovid #longcovidrecovery #longhauler #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #vocalcorddysfunction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis
Check out @welltory playlist on @Spotify. Relaxing meditations, music, sounds. The perfect mix to sail away to. #longcovid #longcovidrecovery #longhaulers #postcovidsyndrome #postacutesequelaeofcovid #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #asthma #vocalcorddysfunction #induciblelaryngealobstruction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis #slowgimotility #chronicillnesswarrior #spoonielife #chronicillnesschronicles
Ironic on World ME day my me/cfs decides to me/csf lol. I can't sit up. Cement feeling. Body is done. #homeinfusion #ivig #iviginfusion #asepticmeningitis #portcare #portacath #salineinfusions #ivport #longcovid #longcovidrecovery #longhauler #neuropasc #neurolongcovid #pots #potsyndrome #potssyndrome #hyperpots #severeasthma #severeasthmasucks #vocalcorddysfunction #muscletensiondysphonia #adrenalinsufficiency #mecfs #postviralfatiguesyndrome #dysautonomia #mcas #mastcellactivationsyndrome #gidysmotility #gastroparesis
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