Insurance, in-schmur-ance... me my mo-shur-ance..

Written by: Amanda Henderson 08-04-2023

Banana Fanna Fo-shur-ance... I really need my saline IVs... My brain is fogging and resorting to kiddie rhymes to help make light of the overwhelming sinking feeling of medical care with inadequate insurance coverage- a real problem facing many Americans, and many more Chronically Ill folks who are left to their own devices to try and get the care they need to thrive.

To say that I'm 'high maintenance' is an understatement. Though, it's not the fun maintenance- 'hair, nails, fashion and beautifying equipment'- oh, no.. I had to pick the boring high maintenance lifestyle of 'rarely diagnosed, no specific treatment or cure, DNA modified syndrome of complexity and low amounts of research and knowledge within the medical community'. It can be a pretty expensive hobby, if you seek treatment. Ehlers-Danlos Syndrome, hyper-mobile type is not for the feint of heart. It effects every part of the human existence (as explained on this website and in prior blogs)- in some areas more than others. Thankfully, it has a strong online presence because so many EDS patients are sharing their experiences and treatment success and failures in an effort to help other struggling zebras find better help to lead a more productive and meaningful life.. That said, it is still difficult, and sometimes impossible to achieve, for many reasons.

Here we are, though, dazzling (a dazzle is a herd of zebras- a zebra is our mascot, see EDS zebra vs. horse), trying to make the most of the DNA we've been dealt. We attend doctor appointments like we have a punch card for collecting most specialties visited in a year. We try as many remedies as our doctors will allow, and as many online or over-the-counter purchases as our often limited pocketbooks will allow us to try. We stretch our providers and our insurance gaps, lapse, and programs as far as they'll go and hope and cross our fingers, toes and hooves (zebra!) that it'll make a bit of positive difference in our daily routines. We consume strange diets and drinks and eliminate that which does not serve our bodies til we're unable to find a normal meal on a regular menu. We get to know nurses and hospital staff and forget what is was like to hang out with family or friends without a care in the world. We reach out to each other, we contract within ourselves, we end up in the hard places of life- dysregulation, dysfunction, disability, dismal existences and futures that are so very hard to explain or obtain understanding from those outside looking in. But we try, unfailingly, and are some of the strongest people I've ever met (online). We find something that works, we share it, and then we find our own routine that pulls us up and out of where we had been. And then insurance has something to say about what and how they'll cover it, and we're fighting for our normalcy, yet again.

During the pandemic, my body decided to stop functioning properly- even more than its usual disgruntled self. It seemed perfectly fine that everyone was at home, because I really couldn't go anywhere, anyway. My fatigue and muscle weakness had heightened, and my GI system decided it didn't need to properly function any longer. Eating and processing food were a major problem, as well as all the other processes that take food through your system. Doctor appointments, tests, and medications didn't provide any more comfort or answers, let alone a remedy of any kind. I was going to the procedure center once a week to receive saline IV infusions, and I finally decided to take the leap and try for at-home care in order to receive more infusions to see if that was the root of my malaise. Medicare has some pretty stringent qualifications for home care, but I met them- I really couldn't go anywhere, even if I wanted to. I'd already met the deductible for my primary insurance, too, so I was covered, for that moment.

Receiving 3-4 IVs per week has helped to regulate nausea, incontinence (urinary and bowel), heart rate, stomach pain and food issues, energy, sleep disturbance and fatigue, physical limitations due to muscular weakness and pain, brain fog, bladder and UTIs, and thus, being able to leave the house to visit others or run an errand from time to time is very uplifting. Administering these medications in my own home make it possible for me to have more independence and freedom.

Fast forward to today, and I'm thousands of dollars in medical debt (again!) for receiving at home care due to a lapse in the billing department checking my coverage when our primary insurance restarted last August. Also, it restarted again this August and I can't afford the saline IVs at home that I'd been receiving until I meet my deductible. My secondary insurance, Medicare, will not cover home IVs but will cover them in a facility, (ever heard of the difference between gravity fed equipment and durable medical equipment? or, professionally administered drugs as opposed to self administered drugs? how about Medicare paying hospitals in blocks and they won't pay out to other facilities, or insurance applies outpatient care in hospitals to deductibles, but not the same care in a physician facility or home setting? no? insert head-scratching here). Ironically, they don't have to pay for the facility itself or nursing staff when I take care of this myself in my home. But, off to an outpatient infusion center I will go until my deductible is met, alas, tethered to home once again. (It's not so bad at home, I consider myself fortunate to be there. It's just so much

work to go outside of it, and then I'll have to remain in it until I'm through this. See spoon theory.)

It would be nice if my doctor and I could decide the care I require for the best quality of life, and then have it granted. I will always wish, at the very least, I could walk into a store and purchase the supplies I need at a reasonable price, since they are of such great importance to my medical care and well-being. In case you aren't aware of the supplies involved in IV infusions, here's a list of what is needed each week. (Spoiler, they generally are NOT found in a store.)

Once weekly Huber needle change:

(Huber needles can only reside within the port for one week. Then, they must be removed and replaced.)

•Dressing Change Kit contains:

-Mask

-Sterile gloves

-Chloraprep swab stick (to disinfect the entire port field that will be under the dressing)

-Clear Tegaderm dressing (a big sticker over the port area keeping it sterile)

•Huber needle

•Skin Prep pad (In an effort to keep the dressing attached)

•Blue connector cap (to connect the tubing for the bag of saline to the port)

•Biopatch (to prevent infection around the needle)

•Tegaderm IV with window (I require both dressings to last the whole week, thank you EDS skin)

•Alcohol prep pads (to swab the connectors)

•Saline flushes (to clear the Port and check blood return)

•Heparin flush (to create heparin lock to keep blood clots out of the port)

•Alcohol swab cap (to keep the connector cap from infection during the week)

•1000 mL Saline with gravity fed tubing

Supplies for the rest of the week - up to 3 more bags of Saline with tubing, Alcohol prep pads, Saline flushes, Heparin flush, Alcohol swab caps, Medical grade tape and GLAD wrap- clear cling wrap works, Press N Seal is best- it sticks to the dressing better. What on earth is that in the Port care kit for, you ask? Showers! Cover the dressing and it will last a lot longer. Though, if you sweat buckets, you guessed it.. good luck on keeping that dressing for a whole week.

There you have it- a day in the life of a chronically ill, EDS having, cloudy day surviving, herd but not necessarily heard within the medical/insurance community, heart-on-their-sleeve human. While I do not recommend this lifestyle (zero stars!!), if you know someone or find yourself living inside such a community, please feel free to point them towards this little corner of the internet. If I can possibly lend any help, insight, or guidance, that might make all of this seemingly useless knowledge useful.