In 1983, I was born prematurely.

By the mid-1990s I developed a serious and debilitating autoimmune condition called juvenile idiopathic arthritis.

In my teen years I developed bull’s eye maculopathy which is a ring of blind spots in my peripheral vision caused by an arthritis drug.

In my early-20s, I awoke with half of my face paralyzed by idiopathic bell’s palsy. I also had some minor procedures because of “female issues.”

When I was in grad school, I was diagnosed with another autoimmune disease called celiac sprue.

In late 2010, I was told I’d need brain & neck surgery for Chiari malformation, a congenital musculoskeletal condition involving a brain herniation. I had that surgery in Feb 2011, just a few months before my wedding.

In the years to follow, I’d be diagnosed with a lupus overlap syndrome, Sjögren’s syndrome, and POTS with a heart arrhythmia called supraventricular tachycardia.

In recent years I’ve undergone a bone marrow biopsy, several skin biopsies, two thyroid biopsies, multiple skin biopsies, and multiple endoscopy and colonoscopy procedures. I’ve had an ademona and a lipoma and cysts and nodules and lesions and a fibrocystic condition that could all possibly bump me into the “high-risk patient” category. Yes — I’ve even had cancer scares and dysplasias more than once.

Oh — and I’m on high-risk medications, too.

I have RA — rheumatoid arthritis. And osteoarthritis. And reflux. And allergies. And chronic migraine syndrome. And asthma. And other bone, muscle, and joint issues ranging from osteopenia to dystonia to tarsal coalition and more.

In the next few years, I will be: having a total knee replacement. For sure. Very likely having another smaller knee surgery on the other knee. Possibly having a foot and ankle surgery — maybe on both feet. And possibly also needing tear duct surgery and a tonsillectomy. If I don’t have all of those surgeries, I will need smaller procedures (aspirations, injections, etc) plus more braces and whatnot, to stave them off.

A medication I was on in the past cost $30,000 per infusion. I had two of them, two weeks apart. One of the medications I’m on now “only” has a cost of $69-84/month but the one I may go on after my knee replacement is $1500-2500 per month.

Luckily, my insurance right now is GREAT!!!! (a group plan through my husband’s employer.) It covers me, and I barely pay anything for my co-pays on these costly drugs and surgeries. But if the AHCA (Trumpcare) comes to pass, I may be in trouble because the protections (annual and lifetime caps) that the ACA (Obamacare) put in place for out-of-pocket expenses could be legally removed. AND states could have the ability to opt-out of covering Essential Health Benefits like prescription coverage, preventative care, physical therapy, and ER visits.

It doesn’t matter if I’m on a employer-based group plan or not.

And don’t get me started on the potential of high-risk pools and people losing Medicaid. 😔

Even if we are still insurable in some cases, myself and many others may not be able to afford meds – or surgeries and other treatments, if the Essential Health Benefits requirement is waived or if the lifetime and annual out-of-pocket limits are removed. Some of the surgeries I mentioned are what may keep me out of a wheelchair or needing crutches 24/7. I’m not exaggerating.

If anything would happen with Mike’s insurance, I may be deemed uninsurable due to my laundry list of expensive meds. If essential health benefits are messed with, my occasional ER visits may become unaffordable. The screenings I have to do (mammograms, etc.) because of some of my risk factors may no longer be paid for. Same with physical therapy. And those prescriptions may end up rendering us pretty much destitute. We’re fine now… but what could the future hold? Am I going to end up severely disabled or dangerously ill because my insurance will no longer be required to pay a certain portion of surgeries or drugs?

My premiums will already likely go up as so many people’s will. And I’m one of the lucky ones!

Oh, trust me: I recognize my privilege!

People who are self-insured, on ACA exchange plans, folks who are poor, or on Medicaid or CHiP, etc. stand to fare a lot worse than someone like me!

My heart breaks for the over 23-million who may lose healthcare and the over-30,000 people who will die every year if Obamacare is completely repealed.

Tell your Senators to vote NO on the AHCA. Beg them not to pass it! Tell them to have a heart and listen to their constituents.

Did you know there isn’t ONE state where a majority of people approve of the AHCA?

In fact in almost every state, the approval rating is below 35% and yet the Senate is still secretly working behind closed doors to get it passed through quickly without giving the public much time to see what it’s all about. Why? Because it’s not good. It’s not good for any of us.

I’m a rare case with a lot of medical problems but the fact remains that anywhere from 30-50% of Americans live with a pre-existing condition.

Are you one of them?

#HealthHasNoParty #ProtectOurCare! #IAmAPreexistingCondition


Please do the right thing, GOP!

One thought on “#HealthHasNoParty

  1. I’m going thru similar issues like Ashley, and have had 2 Myocardial infarctions also a stroke. I need
    My health insurance and prescriptions like many
    Others suffering from pre-existing conditions.

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