***URGENT UPDATE FROM MEGAN***
"My kidney disease has rapidly progressed in one month from stage 1 to stage 3a. 4 is the final stage before kidney failure, dialysis and transplant.
I’m having a gastric emptying study, and a GI consult.
Echocardiogram and cardiology Monday
My thyroid levels quintupled in a month. I can’t afford the $100 copay, along with all the other med copays, though this is most dire.
I need a wheelchair for trips outside the house that aren’t longer than about 5 minutes.
I will likely need a pain pump surgically placed.
We are drowning. Simple as that. Literally any and all help is appreciated."
***UPDATE***
So, we were able to raise about half of our original goal, thanks to some generous friends. Megan has started purchasing her compression garments, and she is so grateful. However, after we published, she received a $12,000 medical bill on top of her already critical need. Her insurance plan has no deductible, but that means that most medical costs are out-of-pocket. I came to understand the magnitude of what Megan is facing and wanted to share her full list of diagnoses and upcoming procedures with you.
In her own words...
"What I have:
Congenital glaucoma
Type 1 diabetes
Hashimoto’s thyroiditis
PCOS
Ménière’s disease
Low blood pressure
Dysautonomia
Hypermobile Ehlers Danlos syndrome
Depression
Anxiety/Panic disorder
ADHD
Occipital neuralgia
Von Willebrand disease (bleeding/clotting disorder)
POTS
Being evaluated/tested for:
Gastroparesis
MCAS (mast cell activation syndrome)
ME (myalgic encephalomyelitis)
Long Covid
Might be missing a few but I did my best.
Tests/procedures coming up: nerve block injections in my neck, spine and shoulders (has to be done twice)
Nerve ablation of the front of my skull
Nerve ablation at the back of my skull
Nerve ablation to neck and shoulders
Echocardiogram
Gastric emptying study
See Immunology about MCAS diagnosis
If the headaches don’t improve we move on to CT or MRI to see if I have chiari malformation or a tethered cord.
I’m spending much of my time from now until the end of the year in doctors offices, procedures and hospitals. And none of this includes if any emergencies pop up.
I have new meds that aren’t covered by insurance, and am starting to need adaptive assistance. I have a cane, but for really bad days, I may need a wheelchair. All kinds of braces to hold my joints together. Abdominal compression sleeves. It’s a LOT."
Please, if you have considered donating, she really needs your help now. If you would also share this fundraiser, that is tremendously helpful too. And any kind words, positive thoughts, prayers, good vibes, candles lit, etc. are of course welcome and appreciated.
***ORIGINAL POST***
My friend Megan has a number of chronic illnesses, which she manages expertly. She has Type-1 Diabetes, and is an outspoken advocate for herself and many others. Megan has been seeking answers as to why her body is betraying her. She has Ehler’s Danlos Syndrome as well as POTS, and she is currently undergoing testing for MCAS and gastroparesis. Megan recently found out that she needs to be wearing compression garments every day. They are expensive to purchase, and she needs to be able to rotate them throughout the week and keep them washed, so she will need several. Add to that the other medical supplies that keep her joints from coming apart and help keep her mobile, and the cost is just more than she can manage at the moment. Megan is a bright light for all who know her, and she regularly raises money for others in her community. I have started this fundraiser because I know that even the helpers need help sometimes too. If it is on your heart to give today, please consider donating.
