So my last scan did not show what they had hoped for. The affected area is still very active (the calcium cells continue to form). Until this stops, the doctor won’t do the surgery as it would lead to additional muscle loss. So I have another scan in Feb. Pain is mild most days. If I am very active during the day sometimes I am pretty sore by bed time and a lot more tired than usual (though since it has been a year, maybe THIS is usual). Needless to say I was very disappointed. It really is a bummer to know that I cannot BEGIN recovery until at least February. For those who’ve been following along that means well over a year since this all began.
When I first began sharing publicly about all this I posted some areas of concern I’d like help/prayer/good thoughts/etc. on. I figured I would revisit that since the 1 year anniversary of the moment I became aware of a problem is coming up in a couple days. Back then I said:
“We would sure appreciate your prayers in a few specific areas:
- Answers: having no idea what is actually going on sucks. certainly some of the potential diagnoses are not great, but at this point we cannot begin moving on with our lives until we get a diagnosis so I would really like to get that part of this ordeal done with
- Finances: we have great insurance through Shannon’s work and we put a pretty good sum into our flexible health spending account that we can draw from, but still lots of doctors visits and lots of medications and lots of tests mean lots of copays. Additionally, the pain and stress and time involved has limited my ability to win new business. So we have more money than normal going out and far less than normal coming in. This is not sustainable and I am currently exploring options.
- Kids: obviously, mom and dad being stressed out is hard on kids. pray that we remain patient and fair with them, they get the time and attention they need and that we have the wisdom to help them deal with and discuss things in a way that is developmentally appropriate.
- Us: stress and uncertainty impact people in a variety of ways. Pray that our relationship remains strong (I don’t doubt this, but have seen it play out poorly in others lives) and that we deal with things in emotionally healthy and responsible ways (not my strong suit).”
So how it going?
- Answers: We got them. It did not lead to moving on with life the way I expected but I do know constant minor pain and the inability to ride a bike is the worst of it.
- Finances: This continues to be a real challenge.
- Kids: I feel Shannon has done an amazing job here. I do ok some days and struggle others. I get tired and cranky really easily and am pretty hard on them at bedtime when that happens.
- Us: Emotionally healthy and responsible ways of dealing with things still aren’t my strong suit. I have struggled with this a lot. I vacillate a lot between pretending nothing is wrong to wallowing in self pity. Neither one of these make me a very pleasant person to be around. And then I get tired and cranky.
I wish I knew how to fix this stuff.
My eye turned out to be periocular cellulitis. I took antibiotics and am all healed up. It was a little scary for a couple hours. I went to the doctors office (several miles from my house) for a walk in but they were booked up all day and referred me to urgent care (several miles from my house in the opposite direction). The urgent care doctor took a look at me and told me I needed to rush to the ER (a block from my house), to get emergency IV antibiotics and a CT Scan. She was convinced I had orbital cellulitis which without the IV antibiotics could lead to blindness or death. I was not very excited to hear this. I went to the ER where they treated me like a pretty serious emergency, until the doctor poured acid in my eye (he called it dye but I think he was lying), looked at it under a blacklight, said, “you’re fine,” then it became like any other er visit where I sat there for an hour until someone came to discharge me. As I was leaving they told me my diagnosis and gave me a prescription. 3 days later I was perfect and I just finished up my antibiotics.