Help Barbara get the surgery she needs

Community of Care - let's circle around Barbara to help make sure she can get the life-giving surgery she needs.

From Barbara:

I, a disabled person, need help getting spinal surgery several states away. This will involve expenses for me and the helper human who will accompany me.

A year ago, I went through spinal neurosurgery to release a tethered spinal cord. I did not recover in the expected ways, and got stuck with chronic 10/10, extreme back pain. I recently learned that this was due to rare surgical complications: a piece of a vertebra broke off (they had to drill through the vertebra during surgery), and I developed thick, fibrous scar tissue full of irritated nerves that won’t calm down.

The solution is a second surgery. The doctor will remove the broken, wandering piece of vertebra, and then hand me over to a plastic surgeon who will “clean up” the scar tissue. This surgery is very specialized, and requires a surgeon who specializes in working on patients like me with Ehlers-Danlos Syndrome, a connective tissue disorder. I have the great privilege to work with such a rare surgeon.

She is in Rhode Island. I live in Virginia. So I must travel there, then live there for a week during the initial stages of post-op recovery. Recovery is complicated for a person with my health conditions. I will need help.

This will happen September 17-28.

My severe fragrance sensitivities and pet allergies prevent me from staying just anywhere. I can’t bargain shop. I have to stay in the only hotel chain I know of that is fragrance-free. It’s not luxurious, but it does cost more than the cheapest Air B&B would.

I was already homebound and disabled before last year’s surgery, which left me even more disabled. Tasks of daily living like cooking, cleaning, driving etc. are very difficult and painful for me. So I need a helper human to drive me (I can’t fly) and a car full of my medical accoutrements to and from Rhode Island, and live with me there, to help me with tasks of daily living. They will probably need to purchase two weeks’ worth of clothes and personal care products in order to be fragrance-free. I would like to pay their travel, food, lodging, clothing and personal care product expenses. I will also need to pay my expenses, pet sitters, groceries and gas for two weeks.

I estimate all those expenses for the two-week, interstate medical odyssey will add up to about $7000:

$450 for specialized pet-sitters to care for my companion pets

$200 for gas to, from, and around Rhode Island

$800 for my helper’s travel to and from Virginia, purchase of new clothing, and purchase of fragrance-free personal care products

$1000 for groceries/sundries for two people for two weeks

$4500 for two hotel rooms at the fragrance-free hotel

This is a lot of money! Life is just more expensive for disabled people, especially those of us who have unusual dietary and environmental needs.

My only income is Social Security Disability, which is woefully insufficient for daily living, let alone any extra expense.

This is why I’m asking for your help. No one person can pay all of this, but perhaps a community can. So I must ask my dear community for help paying for this medical odyssey and all of the expenses it will involve. I would be so grateful for any amount you can donate.