It's me again – I am still alive.
First off, thanks for all the positive feedback and support in response to my last update. I can't express how much that meant/means in this hard time.
About a month has passed since then, so I wanted to update you on my health status.
I'm waiting right now to see a specialist. Apparently the only one that takes my insurance is at the University of Oklahoma medical center – and apparently they're in pretty high demand, because it takes quite a while to get in (at least for the pulmonology department). I spoke to them on the phone a couple days ago and they still couldn't give me a specific date, but I'm hopeful I will have an appointment set by the end of the month (not that the appointment would necessarily be this month but at least to have it scheduled)
They're going to do some tests which will hopefully shed more light on what's going on with my body. Until then, I still don't have a full picture of what's wrong. I'll share with you the bit I do know, as I understand it so far. I know some of you will have more medical understanding than me, I learned most of my medical knowledge from watching TV, so it's possible I don't have some of the details right, but this is how I understand the information I've been given so far by the doctors:
Short version for anyone wanting to skip the long version below:
Tests show that the chest pains don't seem to be heart related – so that's good. My lungs aren't fully expanding or contracting so I'm getting very little oxygen – so that's not good. Among other issues, the lower flow of oxygen is causing weakness, dizziness, anxiety, sleeplessness, inability to focus and/or think clearly, headaches, etc. The already stressed lungs are more easily inflamed by various irritants (pollen, smoke, etc) and especially struggle with warm humid air – unfortunately we've had a crazy amount of thunderstorms and flooding this year and I live in the woods with all the blooming plants. Hopefully as things dry up it will get better, but it's hard to say how much since that isn't the root of the problem, just an irritant.
When I was 14, I was in a car wreck that screwed up my knee (and plenty of other things, but that's the one relevant to this story). When they stitched me back up, the bones weren't aligned properly. It took years and multiple surgeries before the doctors were able to figure out what was causing the continuous pain. Finally the fourth doctor figured out the problem during an “exploratory” surgery, cut through some of the muscles (or tendons?) that had grown back and were now holding the knee misaligned.
The issue of knee pain had been mostly resolved at that point, but further damage had been done. Because I'd been trained to favor one leg over the other for several years, the muscles in my knee weren't the only ones that had begun to compensate. The rest of my body had begun to shift as well – most notably, my back.
I had developed scoliosis (spine curved from side to side) and kyphosis (upper spine rounded forward abnormally). Both of which I've been told by multiple doctors and chiropractors over the years are un-fixable.
Since I was sick of seeing so many doctors at this point, and there didn't seem to be much else they could do for me, I hadn't seen a doctor in nearly a decade before this year. I'd simply done what I could to maintain my back, and gotten periodic chiropractic care along the way.
Things seemed to be going relatively well health-wise, at least for what I'd been trained to expect. But now I'm being told that the kyphosis is likely at least playing a part in keeping my lungs from expanding fully (not sure why they're not contracting – I don't think that's related to the kyphosis...).
When I first showed up at the doctor's office, I had a really bad sinus infection. After listening to me try to breath, the doctor said at the time that I sounded like a someone who'd been smoking packs a day for decades – and I've never smoked in my life. That was able to be cleared up with a a few weeks on antibiotics.
Clearing up the infection helped with some symptoms. My lungs and sinuses don't feel clogged up anymore. But the chest pain and difficulty breathing didn't stop, and has actually gotten gradually worse in the weeks since then.
My assumption is that my back had probably already been compressing my lungs for some time now, it had happened so gradually that I wasn't aware it was taking place. When the severe infection took hold, it put extra strain on both the chest muscles and the corresponding back muscles and things began to shift around – by the time the antibiotics finished their job the stress on my lungs had already increased to a point that it wouldn't allow me to function normally.
At the moment, most of my day is spent in survival mode. We got an air purifier and have cranked up the A/C to cool the air and get rid of the humidity, and I spend most of my time shut in one of the smaller rooms in the house so that it can be as much of a controlled climate as possible. Some days are better than others, some aren't.
Next week, we are going to attempt to make a trip to see some family in Idaho. It's something that had been planned long before my health took a dive, but it's more than a bit nerve-wracking to think about since I hardly leave the house anymore. At the same time, I'm hopeful. Southern Idaho has a much drier climate than we do here (it is a desert after all). I'm hoping that will help my breathing come easier.
While the humidity here isn't the cause of my problems, it is an irritant. And I'm hopeful that this will give me a little reprieve and some time to think more easily/clearly.
I went back to the doctor yesterday. They gave me another steroid shot, because of all the meds we've tried in the past that seems to have helped the most. I'm hoping that will make the traveling go more smoothly.
They also switched my breathing treatment because the other stuff was giving me weird tremors. And they gave me yet another round of antibiotics because the infection seemed to be flaring up a bit again. And gave me some meds to help me get more sleep.
I still don't know what the full prognosis is, and probably won't until I get that appointment with the pulmonologist – but wanted to give an update so you're all aware of what's going on.
A appreciate that so many of you have been supportive and encouraging through this. For those that are disappointed that the progress has come to a halt for now, I am truly sorry. There have been aspects of this project I definitely could have planned better - but this is one thing I could not have planned for.
I am still determined to fulfill my commitments, and I wish I could tell you what that's going to look like. For those of you requesting refunds, the money has already been spent on supplies and equipment. This project was designed to start a business by pouring in a ton of my time, it was not designed to be a big money-maker for me. As such, the funds that are left are reserved for shipping out pledges, so I really can't give out refunds without causing problems with other people's orders.
Yes, you may be able to do a chargeback or something - I'm really not sure. But that will eat into the funds that have been reserved for shipping everyone's orders when that time comes.
Once things are up and running, and there are new orders coming in, I will be happy to refund anyone who would like me to. But at this point offering refunds would only make things worse for the rest of the backers who still want their dice, and I would only be able to refund a small fraction of you.
I will try to keep you all updated as I know more about my health and what is going to be done to treat the issues. I am hoping by the next update I will have had my appointment with the pulmonologist.