Fear looks and feels a lot different for everyone. Sometimes it’s manageable, sometimes it overtakes you and paralyzes you, it doesn’t always make sense, or it’s there to keep you safe.
For me, I live in fear for my kids and their health. Since me and my 3 boys share a rather devastating and largely unknown genetic disorder, the future is anything but certain for any of us. We’re paving the way for research. But that means that we ourselves are difficult to treat with any kind of certainty.
There’s a genuine fear that, for me, any major health concern will be my last.
At our visit to the NIH in February, my echo showed I was in the beginning stages of heart failure, with left ventricular dilation. Heart failure is very common with our diagnosis, so that’s why it’s closely monitored for both me and the kids.
I should be following up on it regularly, and probably on medication. But I haven’t.
I haven’t had insurance since September 2023. It ended abruptly and incorrectly, and I’ve been trying to get it back aggressively ever since.
Well.
Just a few weeks ago, maybe 2, it FINALLY got approved.
But of course it doesn’t start immediately, it starts on the first of the following month, which in this case is September 1st.
So close.
I was so close.
But here I am, uninsured for just another 16 more days, and I’m in a position where I can’t wait to get medical attention. And not the cheap kind of medical attention either.
It’s been a bad week for me, health wise.
It started on Saturday night with random chest pain.
And then 24 hours later, Sunday night, I was about to take a shower, took off my shirt, and saw 2 enormous bruises right where that pain was the night before.
My husband and parents kind of freaked out, and I just…was confused.
The next day the bruises got worse, and by that night my lymph node on my left armpit swelled up pretty huge. The next morning my lymph node was still swollen, and now my entire left arm had a ton of nerve pain. And I’m already taking gabapentin for nerve pain daily, so it was weird to have new onset nerve pain when I’m already treating it.
My husband and everyone who know what was going on has been telling me to go get seen asap. Go to the hospital. Urgent care. My primary, whatever. But I can’t. Not for another few weeks.
I sent some pictures and described the situation to my pcp the morning after the bruises showed up. It took a few days for her to get back to me, but once she did she immediately scheduled me for an appointment. So, that’ll be tomorrow morning at 11am.
Today, however, has been rough. The bruising has gotten worse going down my left arm with some really bulging spots. I started having some blurry vision and a headache around 1pm. Took some medicine, felt better, and then an hour later I got this…you know that feeling you get when you swallow a pill but it doesn’t go down right away, and it just feels like it’s stuck there?
That’s how I felt for a few hours. Then that feeling changed, and it moved into my chest. And my chest feels just…tight. And I feel off. Uneasy. I have a ton of pain in my right shoulder, and I just…yeah. I’m scared.
My husband works with doctors and all of them who he’s explained my situation to have all told him that this isn’t normal, the bruising isn’t normal, and I need to be seen immediately.
So, I sit here tonight with a ton of unexplained bruising, chest pain, a subtle but not so subtle headache, lymph node swelling and right shoulder pain/tightness.
And fear.
I sit here in fear.
Tomorrows office visit alone will cost into the thousands after you consider all the labs and EKG and whatever else she’ll do.
My husband thinks she’ll admit me into the hospital.
I’m scared enough to want to. But I can’t. I can’t even pay off my most recent neurology visit which only cost $300ish. I don’t have an extra $30,000 for a fun hospital stay.
I don’t know.
I’ve never been scared scared for my health. Always in a…scared of the unknown kind of way.
Not a…scared I might die tonight kind of way.
It is what it is.
But we don’t go down easily. That’s for sure.
I can not imagine the anxiety and fear you are going through right now. Please try and put the financial part out of your mind and get the medical help you need. I know, easier said than done, but your health is more important. I am keeping you in my thoughts and prayers.
Thank you, I appreciate it. 🩵🩵
It’s funny because everyone (including me) is actually worried enough to tell me I need to be seen now regardless of insurance.
And I know I’ll have to keep it in mind tomorrow and let her do whatever she thinks is necessary without pushing back. Which…is hard. And I think I’ll actually feel really guilty if nothing is “wrong” and I spent money for nothing. Ugh 😞
Did you go to your appointment? Just curious how things went. Still keeping you in my prayers.
I did go, had chest X-rays and labs done. Chest xray result was not at all what I was expecting and still waiting on labs to come back
I am keeping you in my prayers 💕
You have me all worried, too.
I’m so sorry you’re dealing with this.
Doesn’t your state offer some kind of Medicaid for people who can’t afford to pay the ridiculous out-of-pocket healthcare costs?
There has to be some kind of program!
Keep us posted when you’re able, please 🙏
I have Medicaid, or, I had it when I was pregnant with Atlas. It stopped right before he turned one (last October) even though I should’ve still been eligible for it. I’ve been TRYING to get it back actively since April when I knew for sure I’d be approved, but it just literally took until this long (2 weeks ago) for them to approve it. But it just doesn’t start until Sept 1st.
I still have a pretty awful headache and weird stuff going on this morning and I’m almost scared to be honest with my doctor because I don’t want a bunch of stuff done yet 😞
We’ll see how it goes 🤷🏻♀️
Good luck!
I hate our healthcare system.
I do hope you get the care you need!!