My Battle with Long Covid
Don protégé
UPDATE 14
JULY 22, is my BIRTHDAY!!!
It's my birthday...
And this is me begging...
Hey, if you could afford to kick me a birthday gift, I'd appreciate it!! :)
I must go all fruit veg slushies, liquid diet, start colon preps (i gotta do 2 preps) Saturday... And I can't fuck this up!! The surgeries are going to fix some of what's wrong with me. Yeah yeah, I heard that laugh. We all know I'm crazy, it's the physical health I'm meaning. Anywho, way rude of me, sorry, but I really need help.
UPDATE 13 — LUCKY 13!
️ Posted 7/15/2025
WHOO-HOO! IT’S OFFICIAL!
After months of fighting, Long Covid, and wrangling my intestines like a rodeo clown, I’ve finally got
BOGO surgeries date:
SURGERY IS MONDAY, JULY 28TH!!!
YES, FINALLY! FINALLY! FINALLY!
I’ll be doing not one, but TWO colon preps in two days (hold your applause), along with antibiotics before heading into surgery.
My surgeon will be performing a BOGO special:
Colon stricture removal
Gallbladder eviction
Depending on how it goes — laparoscopic vs. open — I’ll be in the hospital for 4 days, up to a week (or longer, not, knock on wood). It’s a wait-and-see game.
Either way, we go in, we fix it,
We heal, we keep fighting, CUZ
LONG COVID Ain’t for Sissies
Between ALL OF MY PRIOR HEALTH ISSUES (known and unknown, sorta unbalanced balanced existence survival mostly), Covid, Long Covid, 14+cm ovarian cyst:- removed lost all hormones instantly, skin disease: dermatologist- dupixent = 95+ % cleared, migraines- botox = down 50%, POTS: tilt table test is best practices- royally failed= really have it+ working on it, diverticulitis, gallstones, and a colon playing Tetris with itself, this body’s been through the wringer. I’ve lost my health, my career, my income, my relationships, and a lot of my dignity (and not because of the adult diaper aisle, Haaa!!)
But.... I’m still here. Still showing up.
Still making (inappropriate jokes at my own expense) are they really.
Now, I need a little help to get across this finish line.
What Your Support Helps With:
Explosion pants (adult diapers — they’re a whole thing)
Extra comfy clothing (post-op bloat isn’t cute)
Soft, bland, easily digestible foods (for pre-pre-prep & post-op)
Protein shakes & smoothies (for pre-pre-prep & post-op)
OTC meds, wound care, and prep supplies including mop, bucket, cleaning supplies, etc
Transportation expenses, bills- so i don't have to hustle while I heal, and recovery support, etc
And yes- I’ll be rocking hospital crocs, because fashion, function?
It's all good in love and war ✨
Also... It’s My Birthday!
July 22nd, right before surgery
What I'm asking for is help, again...
Because I’ve got sh*t to do.
Because I’ve got a LIFE to live.
Because I want this surgery and want to survive it and get back to being the short sassy, slightly eclectic "memere in crocs, tye dyed crocs" I was meant to be
Cuz I wanna kick Long Covid butt!
If you’ve got $1, $5, a share, or just positive energy, happy healing vibes, prayers... it ALL helps!! ✨️
Thank you for helping me
Stay in the fight
Best,
Rachel
UPDATE 12!!! 6/10/2025
It's been awhile, this is nothing fancy, and I'm really tempted to just pull all the text screenshots I have and just post those, lol.
So I'm still kicking, as you can see.
I've been downstate more than I've been home so far in 2025. I'm sorry Bob!! Thank God for my gurlies too!! their partners, and especially my grandkiddos, for putting up with me!!
THE medical update...
I will hopefully have my BOGO surgeries before June ends. I've seriously never had to work so hard to get surgeries. It did pan out though. I get 2 surgeries in 1. BOGO, here I come! Ha!!!
I got my colonoscopy, finally... iykyk.
Dr Jean found a stricture the pediatric scope was even too big to pass. So she set me up with a surgeon, Dr V, who will do a colon resection. While he's in there, he'll remove my gallbladder too. Apparently, it's packing gallstones. I told Dr V I'd need a BOGO when he told me. LOL!!
I also told him everytime someone finally listens, finally believes me, everytime we finally look deep enough, we find something new. This doesn't get me back to work. This doesn't change the long-term insurance disability claim denial. This doesn't give me ssdi or ssi quickly, if at all.
It DOES validate me though. Even though I shouldn't have to... especially to such drastic measures.
Please help me. I'm begging you...
I need to continue kicking butt. I need to continue fighting long covid. I need to continue validating myself. In order to do that, I need money. I need donations. From you.
Whether you're family or friend, stranger or friend-of-a-friend... please help me.
OMGOSH!! I forgot the best thing...
I FINALLY GOT MY FIRST TATTOO!!
I'll share a photo as soon as I get one!
Dr Jean was more concerned that ❌️ marked the stricture spot, instead of the posterity frame... hehehe!!
P.S.
Please, please, please help me!!
Help me fight to get better. Help me fight for a better future. Help me fight so I can get back to work. Help me fight so I can actively spend my time living life... especially with my precious grandkiddos. Please help provide them this gift, too
CAN WE HIT THE $5000 MARK!?!?!
BY THE END OF THE WEEK?!?!?
UPDATE 11 10/29/2024
Nothing new... same ole, same ole... is how I feel. But that's not all of it.
If you're able to donate, please do!
My dermatologist follow-up appointment was not what I'd hoped. The massive rash whatever stuff all over me appears to be responding somewhat to the double ointment treatment I've been doing on the daily (I go back and forth, changing every 3 days). As long as I don't do anything to upset it (i am always finding new ways to upset it) it's doing better. It's mostly my fault about the appointment. I was scheduled to see Dr Kerry, but had to cancel as I was too sick. Poor Andrea, I slept almost the whole time I was there. Thankfully my gurlies understand, as do their partners. My older grandkiddos are learning to understand and the youngest thinks he's lucky not to have such long naps, lol. I was able to get in on Friday for an appointment, but only Sam was there. It's okay, I gotta do what I gotta do to find answers and get back to my life.
I'm heading back north now, with an extra day of rest at Alissa's. I'm not able to drive very far all at once anymore. Where I used to be able to do l-o-n-g distances, even in horrible conditions.... like driving through 2 snowstorms to pick up a puppy lol. Now I'm lucky to make it 4 hours on the regular. I can do more hours if absolutely necessary (i.e. emergency), but I'd "crash" real bad at some point. I push beyond my long covid limits too much and suffer for it already. Like with my fibro, I learned how far I could push myself and was finally able to function at least halfway by pacing myself. However with long covid that goalpost is always moving, getting closer, blocking my path, boxing me in. It brings all kinds of symptoms, old and new, like this whatever all over rash I've been fighting. I know I am getting worse and me continuously pushing increases the pace... so what's my new approach? I wish I had one.
I'm have neurologist appointment in Bangor early December and follow-up with dermatologists downstate mid December. I am still waiting for an appointment to be scheduled for MRI and whatever else the ER (some type of real painful muscle spasms/ seizure thing brought under control with an injection in the ambulance. Thanks Jess!!) had recommended.
Sorry, brain fart going on here now and I just realized I hadn't shared the last update with y'all... smh. I am still pursuing Beth Israel Deaconess Long Covid Clinic appointment in Boston ~~~sighs... Finally got registered though, whewwww. It's going to take time and I'm trying to be the squeaky wheel. A long covid friend got me in touch with her friend who did the work to get her into the Boston clinic. Once I get home and rest, I'll be catching up with her hopefully.
I am very much in need of monetary help so I can make it to my appointments, keep my car on the road, and keep my personal bills paid!! This allows me to keep fighting to get answers to get better to get back to life, work, etc. Please donate if possible and share everywhere!!
I want to thank each of you who have donated, shared, followed, and prayed!! Please help me to continue.
UPDATE #10 10-14-2024
Gearing up to head downstate for another dermatologist appointment. Thank goodness I can stay at my gurlies' homes and don't need to rent motel rooms. I could really use help with car insurance, registration, and gas right now though. And at some point (sooner rather than later) I need tires changed over, my pumkin' (my orange subaru) needs her snow tires on, especially since I'll be running up and downstate during the winter.
I'm crossing my fingers that this appointment will shed some light on why I'm just wasting away. Perhaps enough so that dermatologist puts in a referral for Boston too ?? We shall see on Wednesday. Prayers up!
Thank you all for your support and love during this time! It's almost been 2 years I've been fighting long covid and this "who-knows-what" mystery swelling... Please, please help me to continue my fight.
Edited Oct 10, 2024
UPDATE 9, I THINK!
So I wrote a beautiful update, ticked the add photo, selected photo, then clicked the return. I hit the back button instead... ooppss :(
Btw, I'm registered in BOSTON l!! :)
Whoo-Hoo!!!! YEAH!! No date yet, but... That's step 1, one step at a time.
I cannot express how thankful I am.
It seems stupid to be so happy about just getting registered lol. It's almost 2 years I've been fighting long covid and declining health. And anything that gets me closer to answers and treatments is a blessing and no blessing is too small. I want to get well so I can be me again, so I can work, so I can play with my grandkiddos, so I can kayak, so I can sit in the sun... and a million+ other things. Please donate and share :)
UPDATE #7
My funny for the day...
At last, evidence that I'm not crazy when explaining my mystery swelling "I feel like I'm just wasting away" symptoms to everyone
Disclaimer: I have not read the entire thread, just a few comments!! (see reddit link below)
Please help me find answers!!
Donations highly appreciated so I can continue fighting for my health!!
Thank you for all of your support.
Edited Aug 6, 2024
UPDATE #6
BOSTON is APPROVED!!!
Next step is to get an appointment!
These last few weeks have been hard, as symptoms continue to get worse, and the diverticulitis isn't taking a vacation, sadly. I don't understand how anyone lives with all of this this :(
I also finally got a therapist on my care team! She'll be crucial to keeping me on track mentally and to not slide down the slippery slope called depression.
I'm still fighting the long term disability insurance company. It's frustrating and I'm in desperate need to stay above water right now. I've made it this far, pleaze help me make it even further.
Please donate and share, share, share!!
Every penny really does help.
Thank you to all who have donated, shared, and prayed. I truly appreciate every one of you
Edited Aug 6, 2025
I choose to lower my goal...
Edited: May 1, 2024
I have yet to recover from Long Covid and the mystery swelling.
This has a lot to do with the time I spend begging, stressing out cuz I can't "pay my way", and losing soo much.
I'm asking for $20,000, enough for a year.
So I can focus on getting better and back to work!!
The long term disability insurance company is still denying my claim and signing up for SSDI/ SSI is just as bad.
However, I'm going to keep trying.
Thank you in advance <3
Original post:
Those who know me can understand why it took me forever to do this write up and to launch a Go Fund Me...
I have a very hard time asking for help, but life's curveballs has made it a necessity this time.
Covid finally caught me in late October and true to form, life pitched a drastic curveball. My body decided to take a huge swing and went into "hyperactive immune response" mode and I have been unable to work.
Just because we don't hit one out of the park, doesn't mean the world stops. So here I am, asking for help to meet my bills until I can get back to work.
Life's curveballs happens to us all and I will get through this strikeout and be back up to bat again soon.
Thank you in advance for caring and sharing ❤️
Organisateur
Rachel Southworth
Organisateur
Saint Agatha, ME