Monday, August 17, 2015

no sign of land

I have two posts partially composed about how we're about to move into the RV, and here are some photos to show. They were waiting for me to add said photos, because I want to show you a before/after scenario, and that means spending some time in photoshop as well as making sure I take photos at roughly the same angles.

But life seems to have other plans. Plans like making our already overly-complicated lives even more complicated. And just when we're seeing light at the end of the tunnel, the tunnel collapses and traps us inside. I'm finding it difficult to see it any other way right now, because it just feels like no matter how hard we try, this is just never going to happen.

Here's what all chronic illness sufferers never tell you (or really, we do, people just don't really ever hear us or "get" what this really means): Life with chronic illness feels like drowning with no sign of land. I'm not talking about the illness itself. Those of course all have different symptoms and manifestations.

I'm talking about life around chronic illness. Being a caregiver. Needing care. Trying to take care of all the daily tasks of living while also holding down a full time job and being a caregiver. Trying to take care of all the daily tasks of living and just never being able to. And watching medical bills destroy your savings, then watching them accrue and accrue as credit card debt because there is no more savings with which to pay them. And this is WITH excellent insurance.

People don't see all of the costs associate with a chronic illness that insurance won't cover: traveling everywhere for medical care, places to stay if one needs to travel, all the copays not covered, all the extra out of pocket expenses, all the supplements, treatments not covered by insurance, deductibles, all the things that need to be done to the home to make it suited to life with chronic illness.

(Example: "We don't cover bed wedges (needed to sleep in a semi-upright position to combat my dysautonomia an improve my BP). Those are to see if you need an adjustable bed (which they WILL cover, at 80%).  And... ALL my meds need to be compounded, but insurance only covers 50% for compounded meds. I have six prescriptions, none are less than $20 a pop, some are more than twice that. PER MONTH. geneticist is a 3.5 hour drive from my home. So each time I see him, I have to pay for the gas, wear and tear on my car, and exhaust myself driving the 3.5 hours to visit him. My MRI/CT scans were also 3.5 hours away, and covered at 80%. I had to pay the rest out of pocket, which was close to $500. And on and on.)

This is just MY health care costs. I have a friend who has two children in my same situation, plus herself. Three people in her family have these kinds of health needs and expenses. Every month. And no outside help.

And there are ZERO resources to help with this. No support services or outside help - when you live with chronic illness, unless you have some spectacularly amazing friends and family, even if people were there to help in the beginning, pretty soon there is "assistance fatigue", and everyone returns to their normal lives. People think, "Oh, someone else is helping them, I don't have to," or maybe they just can't be bothered, I don't know. And they forget all about the people with chronic illnesses. And I won't lie, we really do need the most help.

Meanwhile the partner, who has been unwillingly inducted into the role of "official caregiver", is stuck doing the job of seven people. Cook, housecleaner, caregiver, 40-hour-a-week day job (because we have to pay those medical bills and keep a roof over our head and food in our bellies), errand person, advocate, driver, and don't forget able-bodied parent. My husband has also been handyman, painter (of the RV), lawn maintenance person, and more. He is freaking EXHAUSTED, never gets fun time for himself, always has the most ridiculous "Honey Do" list ever, and he has zero support system.

 I at the very least have an online community of support - others like myself - and even though some of us DO know each other in real life, it's super hard to have any sort of get-togethers and human contact due to various health issues. We have a couple of families we see semi regularly, who are able-bodied, and I love that they will come here for visits because of my issues - they are amazing people. But it's mostly their kids and the Moms and I who are friends, not so much the husbands. SO *I* have a sort of support system. My husband does not. 

When we DO get help from a friend, I am crying with gratitude. It's crazy amazing what a non-fatigued, able-bodied person who isn't bogged down with taking care of a chronically ill family is able to accomplish. I mean, the contrast between what they can do and what we can do is mind-boggling. And vast. I am grateful that we have anyone at all who will come and help us try and make some kind of dent in this. She drives almost four hours to do it, too, once a month. Her son and our son play together while we do as much as we can in one weekend. It feels super important to mention that I have this, because 1) I am so incredibly grateful for this kindness. And 2) Not everyone with chronic illness even has this. 

And not even what I meant to post about. But is also necessary backstory to what I did mean to post about.

Which is why we were in the RV for about 4-5 days, then had to move back into the house.

I know.

But now that's the next post.....

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