The past three months have been very difficult. If you’re a regular reader, you know I had ear surgery in October. I have more complications than I can count on one hand. Healing was very slow and a couple of weeks after the surgery I came down with something called BPPV in two semi-circular canals (in my ear) which causes vertigo, the entire world to spin, balance issues and incredible sea-sickness and nausea. At one point I was so bad I couldn’t do anything but sit on the couch holding my head so it wouldn’t move. I couldn’t drive at all for about ten days or so. Eventually, that seemed to get better, though the swelling in my ear never went down. My ear canal and the skin graft though was still not improving (and of grave concern to my ear surgeon.)
I had three good days in mid-November and then one Saturday, I was leaning under the couch trying to get a book when I felt something happen in my ear. From then on I had symptoms like balance issues, sea sickness when I turn my head (or nod in agreement), ear aches, swishing and loud (LOUD!) pulsating in my ear, vision issues such as tunnel vision and trouble focusing on objects when I walk or move… I’ve been very sensitive to loud noises. Sometimes even my own voice bothers me. Oh–and the brain fog and fatigue; it has been debilitating, scary, and exhausting.
One of the doctors I saw, said that my brain is working over-time trying to figure out where my body is in space (since my balance system is out-of-wack), trying to get my eyes to work, and processing all these extra noises. For weeks and weeks my ear doctor thought all this was still connected to the BPPV I had in November. I went to 2, 3 and 4 doctor’s appointments a week to try to get to the bottom of all this. Meanwhile, I was on and off steroids and antibiotics to see what would bring the swelling down, though open wounds started festering on the scar behind my ear. I had a CAT scan which showed fluid in my middle ear.
Finally, last Monday (a week ago) I told the doctor that I noticed that when I pushed on my ear things go wildly out of focus, the bone feels gooshy, and I can hear popping. Plus, it feels like I’m tapping straight on my eardrum. My doctor’s eyes kind of got wide and said, “We need to do some surgery and it can’t wait.” He thinks that I am allergic to the bone filler they used (thus the swelling and unhealing wound behind my ear). And he also thinks I have a “third window” in the superior semi-circular canal (a very rare syndrome-first discovered in 1998)… and that the bone between my brain and canals is too thin (the pulsating, SHHhhing noises are the sounds of blood moving through my brain… some people can even hear their eyeballs moving!) My doctor started thinking about when he could make the surgery work (“Hmm… he said, not this week…”) and said something about Monday (today, Jan. 20). I mentioned that I had tried to book an appointment but that he was out of town. He said that he hadn’t bought the tickets yet (to take his son to visit colleges) and that he would make sure he was back in time for surgery if he could get a slot at the hospital. So after a few phone calls — it was set. I was to have surgery in a week (Monday, Jan. 20th).
The surgery will entail drilling out and removing all the bone filler. Then taking some bone material from the skull above my ear and using that to patch the hole in the canal and to add to the temporal (skull) bone in the affected area. It’s fairly major surgery probably to be followed by some minor surgery later to deal with the areas where the bone filler was removed along the ear canal. What a crazy journey this has been.
Let me tell you, that threw me into a tailspin for a couple of days. For one thing, I felt horrendous and for another I thought I’d have longer to arrange for care for the kids, etc (since we homeschool, that’s a bit tricky). After numbers of phone calls my sister said she and my niece would drive up from Tennessee to be here. My niece (who also homeschools) will stay on after my sister leaves (my sister works as well as homeschools, so she will need to drive back down to go back to work).
Since the doctor put me back on yet another round of steroids to bring the ear swelling down, I started to feel a bit better on Wednesday and Thursday… though haven’t felt very good this weekend. I managed to get in another three doctor’s appointment, make plans for the kids and tried to pawn off some of my other responsibilities (I was running a science fair type event and am on a board that’s dealing with legal issues). Ugh.
Through all this, I’ve really learned a lot. I’ve tried to be forgiving of myself. I’ve tried to nurture the kids (because it’s obviously scary for them to have a Mom that is at times out of commission or snaps or cries more than usual). I’ve learned that we just have to keep going (chin up and all that). I’ve learned to take help (I’ve accepted people’s offers of meals, had friends drive the kids to activities, let friends take the kids for sleepovers). I’ve leaned on my friends (HARD!) and family (HARDER!). I’ve paired down my expectations of myself.
A couple of friends who don’t know me quite as well (who don’t really have any idea of what we do for homeschooling and don’t even know that I blog) asked why I just didn’t put the kids in school until I’m better. It was suggested out of concern for me, but it made me laugh or groan (inside, not to them of course). Homeschooling is so much of who we (our family members) are. Yes, there are definitely times when the kids did the absolute minimum and then watched a movie. But at those times, I made sure it was an “educational” movie. They might have “played” more, but it wasn’t a free-for-all (we still have fairly strict rules about electronic/TV time.) I am fortunate that my older kids (8 and 10) are in general “ahead” (whatever that means) in math — and right on target in other areas (I guess). Honestly, homeschooling is a vision of where I want them to be as young adults. Learning life lessons like this are valuable too (when people are ill, they cope as best they can, cry at times, and then smile and get the hugs they need to keep going). Back to the suggestion, “just put the kids in school” I told my husband, these same (well-meaning) people would never look at a lawyer or an accountant or a IT person and say, “why don’t you quit for a few months until you feel better.” The final thing that bounced around in my head (and probably many other happy homeschoolers can relate to this) — is that my kids love (I should have capitalized that!) — yes, they just love homeschooling. It would be very difficult for them to suddenly be thrust into traditional school especially when they have no interest (at this point — we’re always open for that in the future) in going. Right now, my kids need the stability of continuing on with our Civil Rights Movement unit even if there’s three or four days of a break rather than one or two… They need to know that this is just a temporary blip. People go through those, get through those, and come out stronger for it on the other side.
So, like any teacher I have plans laid out for my “substitutes…” Some math marked out; some cool, fun science kits that have been sitting around; a couple of “educational” movies lined up (The Story of Ruby Bridges and Selma, Lord, Selma) Plus, the kids have each chosen a new Newbery book to read… ED will read Henry and Mudge stories to my niece…
So there you have it. I am pretty relieved and happy to be having this surgery even as apprehensive as I am. I’m hopeful that this is a huge step forward in recovering, hearing, seeing and walking normally again.
And my wonderful blog readers, I was able to get a number of posts done ahead of time… so I haven’t forgotten you (or the blog). I have a lot of math and writing posts coming up which include a number of freebies. Usually, I have posts set to go early in the morning, but instead I’ll have the new posts come out around noon or so this next week.
My other ear posts: