Happy Friday, and welcome to December! I’m starting the month quite a bit under the weather, hoping I don’t continue and finish it that way. I go to the doctor this afternoon, so we’ll see what she says, but I’m not recovering well from this cold/COPD exacerbation, and the lack of sleep the past few days isn’t helping at all.
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She’s a bit peppy for me today, but maybe this will help:
When you have COPD one of the first things they tell you to treat it is to “stop smoking and you’ll improve.” Yeah, kind of difficult advice to hear when you’ve never smoked in the first place.
In my case, second hand smoke when I was a child, years working in drive through’s dealing with exhaust fumes, decades of asthma and bronchitis, pneumonia and other exposure to things like forest fire smoke has caused mine. Basically, what my Pulmonologist told me, is…. that COPD can be damage or scarring on the lungs that affects function. In my case a lot of the scarring is from frequent bouts with bronchitis and pneumonia aggravated by damage from contaminants that I’ve been exposed to over my life.
I’ve had asthma since I was about 15 years old, and for most of my adult life I had no insurance, or very poor insurance, so I treated it as best I could, ended up in the hospital a lot, and used things like Primatene Mist when it was available, because I couldn’t afford to go to the doctor to get a prescription for a ‘real’ inhaler. Yes, I knew it wasn’t the best option, I knew it was dangerous, and I was as careful as I could be. But it was what I had available at the time.
Even now that I have medicaid I find myself refilling my inhaler prescriptions even if they aren’t empty yet.. and carefully holding on to them, using the older ones first so they don’t expire and rotating them out. Because if I lose my medicaid I’ll once more be stuck without an inhaler and gasping for air, and I’ll be in and out of the ER a LOT more than I am now.
I have medical insecurity. I guess that’s as good a word as any. Even when I had insurance a lot of times it wouldn’t pay for asthma meds because it was a pre-existing condition. Nevermind that there’s a really good chance that if I’d had meds then, and appropriate treatment, I may not have COPD now. I may have one less thing to threaten and complicate my life and make me unable to work. And now… we’re looking at potentially losing access to medicaid again, if Congress and Drumph get their way. And in Florida once my daughter is grown, unless I get my SSI pushed through by then, I’ll lose it anyway. Adults without kids generally don’t qualify in my state now, I can’t see that improving within the next 3 years without a miracle.
My Aunt died of complications from asthma when she was 47 years old. I’m 47 years old now, and not a day goes by when I don’t think of her, and her struggle (and she *had* good insurance), and determine to outlive her record.
But weeks like this make me very nervous. The constant shortness of breath, just from getting up and going into another room (like the bathroom), the low grade muscle strain in my ribs, the wheezing, the fighting and exhaustion… it makes me nervous. Which then makes it harder to sleep, because asthma attacks that strike while you’re asleep seem worse because you wake up panicked and often further into the attack so they’re harder to treat.
Of course having seizures from the FND because I’m exhausted and sick and not sleeping well don’t help either. They too can cause me to be short of breath, to require a nebulizer after. They can cause that even when I’m having a ‘good’ breathing day, let alone the week and a half I’ve been having.
Asthma is a treatable disease. Many of us didn’t do anything to give it to ourselves. For some it is genetics, for some it is environmental, sometimes it’s a combination of the two. Even some people with COPD (though a smaller percentage) have it through no fault of their own. They didn’t smoke, they didn’t do anything intentionally dangerous, they lived, they worked, they got by. It wasn’t enough. Without access to healthcare, asthma kills. With access to healthcare, it can still kill, but it’s less frequent. THREE people in my immediate family have asthma; myself, my other half (who was born 3 months premature), and my daughter (inheritance and catching RSV when she was 8 months old). We aren’t smokers, we aren’t risk takers, heck when it’s smoky outside from a forest fire or someone barbecuing my son (who is the only one without asthma) takes the dogs out so we don’t have to go out in it. My mom, my Aunt (RIP), my Uncle, and one of my sisters is also asthmatic.
So I worry. What’s going to happen to my daughter when she’s an adult? Will she be able to get the healthcare she needs to remain healthy? How long after she’s an adult will I have access to healthcare?
Hopefully the doctor will be able to do something to ease this off, probably a more extended dose of prednisone than the ER gave me, maybe some antibiotics if she feels it’s threatening going into an infection (or to stop one from laying wait in my lungs), probably a continuation of the nebs and inhalers I’m already doing. Maybe a new inhaler. I’ll find out in a couple of hours of the time of this writing, and I’ll let you know tomorrow if not as an addendum to this diary tonight.
Ok, so, back from the doctor’s. She’s adding a third inhaler to the mix (I believe she said Spiriva) and hoping that will boost my lung function up to where it should be. She doesn’t want to put me back on high doses of steroids right now if she doesn’t have to. In the meantime, I keep doing what I’ve been doing. Lots of nebs and rest and taking it easy.