Category Archives: Health issues/care

Coming Out of the Dark

Note: I wrote this on February 27, 2014.

Coming Out of the Dark

Today is the one-year anniversary of our nightmare and our miracle.

On February 27, 2013, Aaron prepared for surgery for his third consecutive retinal detachment in his only working eye. He had already spent the majority of the past four months blind, or nearly so, and forced to sit, sleep, eat, and walk with his head down, face parallel to the floor, while a gas bubble held his healing retina in place. Except that it wasn’t working. Fluid was entering his eye again and would soon cause a fresh tear in his fragile retina. It was a fresh tear in our hearts.

For months he had endured—darkness, stiffness, pain, isolation, helplessness, dependence—propelled only by the hope that this obedience would make the difference, would save his right eye unlike the surgeries on his left eye when he was a teenager and did not follow these rules. Each day he sat alone, all day, save visits from friends to give him shots or help with meals. He lived on phone calls and text messages read by Siri and coffee drunk through a straw because he could not so much as tip back a mug and casseroles from church folks and the asiago cheese bagels my mother kept bringing to fill her own need to do something, anything.

As he sat, I ran, in frantic circles, overwhelmed by keeping up with work and after-school arrangements and care calendars and appointments and the neverending dishes he used to do so religiously and well-meaning questions with no answers to give but wait-and-sees and hopefullys and those damn, damn unknowns.

All of November. All of December. Most of January. Now February . . . and this last wound seemed worst than the first, for the doctor gave up hope that another gas bubble would work and planned for this third surgery to use silicone oil to fill the eye. It would not require the facedown positioning but also would not go away—it would be left in indefinitely, leaving Aaron able to see only what he could see through the oil, which we doubted with his already damaged eye would be much of anything.

It felt like a theft. Aaron’s vision had been improving, but because of the encroaching fluid, on Wednesday at 8:00 a.m. the doctor was going to take it away. He was going to make my husband functionally blind, to save some of his sight. Continue reading Coming Out of the Dark

The Frustrating Roller Coaster

“How’s Aaron’s eye? Are they going to do surgery or not?” Answers have varied much more than expected–and more than my emotional state could handle–over the last couple weeks.

On the 3rd the eye doctor said Aaron’s lens was “stable” where it was and so he shouldn’t have surgery. It was so stable, in fact, that it stayed where it was for four more days before shifting from the bottom of his eye over to the left side. So instead of seeing double when looking down, he started seeing it sort of pop in and out of his vision from the left. It’s not double vision but more like he has a hair in his eye that he can’t get out, and sometimes light reflects through it in funny ways. Assuming that it having moved meant it was, you know, actually not stable, we started thinking surgery again. He got squeezed in at the eye specialist’s on Monday afternoon, although he wasn’t able to see his regular doctor.

This guy said it probably had moved, but it was still not a problem to leave it where it was. Aaron said but this is really annoying in my vision. He said but surgery is risky. Aaron said you don’t understand how frustrating this is. He said you don’t understand how risky it is. He really pretty much made it his mission to scare the crap out of us as far as the idea of surgery. And it’s understandable–it’s their job to weigh the risks based on their expertise, and given Aaron’s history….  But still frustrating.

Aaron will see his usual specialist this week, but the discussion will probably be the same. The other doctor did say it’s possible the lens would completely detach and fall all the way down to the bottom of his eye where he wouldn’t see it at all, and they’d still probably leave it there. Maybe that would be less frustrating. Meanwhile please pray that stable really means stable, or if it’s going to move again it moves to the least annoying (but still retinally safe) place–and that Aaron can adapt to and accept however it’s going to be.

(That sermon on contentment really sucked!)

Now that this roller coaster of yes-no-maybe-so surgery thoughts is hopefully coming to a complete stop, we are looking ahead to seminary starting back up for Aaron and a new routine for all of us. This week is sort of the last hurrah of summer already, since orientation starts next week. I feel like I shouldn’t say it, but I think I’m ready for fall. But not winter!

False Eye-larm

Uh, semi-false alarm. Now I remember why there are specialists.

Aaron’s retinal specialist today said he doesn’t think he needs to do surgery right now. He says it appears at least one of the sutures holding in the lens implant broke, so it did slip down, but it is not flopping around in there like the other guy made it sound. He feels it’s better to leave it in there than to do surgery–unless Aaron really cannot see well enough with it where it is. The doctor feels he may adapt to this somewhat and we should give it some time.

So that’s a relief, mostly for me, because I won’t lie, I was just about ill with dread at the prospect of surgery. But it is still so frustrating for Aaron because he still has the double vision effect when he looks down, and it’s coming up on time for him to do a lot of reading/studying/typing. And of course if the lens slips further into a bad position it would need to come out. That could really ruin a semester.

So please continue to pray for us:

  • that Aaron’s vision rapidly improves, whether by the lens shifting just slightly or the brain somehow looking around it, so that he is able to do what he needs to do and avoid surgery, forever
  • that his glasses are adjusted to the best possible fit
  • that his retina continue to be protected, forever

Thank you all for your care and prayers.

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Oh yes, and pray: that I can stay off of Facebook, forever. Ha!

Here Eye Go Again

I think I’ve written this post before. It sucks.

Aaron is going to have eye surgery soon. He only has vision in his right eye (due to retinal detachment in the left, years ago). So while we kind of took it in stride when we found out–because hey, what’s one more hospital trip this year?–the reality is that this is a big, scary, pain in the —— deal.

In 2006 he had an artifical lens implanted in his right eye. On Wednesday it fell out, basically. Aaron and our friend B.McD were going to take the kids to the beach, but as they were leaving Aaron felt like his contact was messed up. He couldn’t fix it, couldn’t fix it, and realized he couldn’t see anything with his glasses on either. A neighbor friend took him to the hospital and B. heroically insanely took all the kids to the beach anyway. The hospital sent Aaron to a nearby opthalmologist, where I met him.

The doctor seemed almost a bit too excited when he was able to confirm his theory: Aaron’s lens had dislocated and slipped down toward the bottom of his eye, so he was able to see pretty well looking straight ahead some of the time but had bad double vision especially when looking down because the lens would sort of float into his line of vision. The doctor said the lens possibly came loose because Aaron’s eye shape has changed quite a bit–his prescription actually went from a positive to a negative! This would be unusual for most of us but is not so unusual for someone with Marfan Syndrome, because it makes tissues stretchy, and the gas permeable contacts he was wearing may have contributed.

They’ll have to take the lens out of there, but this doctor thinks they won’t put in a new one because now he is actually seeing better without a lens than he was with the implant. Crazy. Tuesday he will see the vitreo/retinal specialist who will do the surgery, and we’ll see what he says about a new implant. Aaron did get new glasses with this new prescription Friday, so he can see and drive again in the meantime, although sometimes he still gets the double vision.

Please pray for all the doctors’ wisdom and for the upcoming surgery, which will probably be early next week, and that his retina is protected while the lens is floating around in there. I’ll let you know after Tuesday what the plan is.*

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*Dangitall, am I going to have to get on Facebook too?!

Pin the Tail on the Hand

We are back from Oregon, and I’ll get to pictures and tales as soon as I can, but first I must show you the thing which did its best to ruin Aaron’s trip: his hand doctor’s little game of Pin the Pin on the Guy’s Hand but Leave a Whole Lot Sticking Out. Wanna see? (Too late.)

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Ouch! This is his hand about a day after we got to Oregon. We’re not sure if it was because of swelling going down, or something to do with pressure on the plane, or the sadistic airport security guard who grabbed Aaron’s hand and squeezed, but this pin was sticking out about a half inch by then. Of course this made it really easy to bump, and because it was way down in there, his hand hurt like heck anytime he bumped it or moved wrong. So I had to help him put several layers of gauze pads around the pin and then get his splint back on, plus things like getting his sweatshirt on and off without pulling on it. Fortunately it did start to feel better later in the week.

We got home Monday and he was able to get in to see the hand doctor Wednesday afternoon. He claimed it hadn’t moved that much but the nurse said when she pulled it that it was one of the loosest pins she’d ever pulled–i.e., it was wiggling all over poking his poor hand insides way more than it should have been. And guess what? As soon as the awful pulling was done, GLORY HALLELUJAH, he felt 95% less pain! He put his splint on by himself and it didn’t even hurt. But now he can leave his splint off more and start moving his hand more.

Dare ye look? (Too late again.)

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He is now ready to assemble some Ikea furniture.

I can’t believe they made him keep that in/sticking out of him that long. Funny thing is, it’s not even the weirdest thing in him. (I’d say that’s his ticking heart. Or his sense of humor.)

Now may his scaphoid stay strong!

Hand Surgery Report

Aaron’s wrist surgery went fine. They were saying it could be a 3- or 4-hour surgery if they had to go in on the underside and then also the top of the wrist, but it ended up being the 1 1/2-hour, one-side version, so I guess that’s good. We hope and pray that the screw plus scar tissue hold the wrist stable for ever and ever amen so he never has to go through this again.

The pain has been bad at times, but overall it’s getting more manageable as the swelling goes down and when the Vicodin levels are right. But he doesn’t like its side effects so we hope he won’t need it all the time for long.

AJ got some extra time with me yesterday since I’ve been home and trying to keep her out of Aaron’s space. An extra fake Saturday was probably good since she’s been hungry for mommy time since I went back to work, I think. We made waffles and cut fruit and made a second attempt to get all the sand she dumped on her head Monday at daycare out of her hair (so imbedded! Thinking of sending a swim cap on potential sandbox days.). But I’ve gotten almost no work done at home and this evening we have a wedding to attend–AJ has been asking to put on her dress since yesterday–but before the reception we are shipping her to Grandma and Papa’s for the night. Maybe that will help me get/feel caught up and rested. It won’t last long, of course, because you know I’m going to stay up hours past bedtime for the LOST finale extravaganza shenanigans Sunday. I.CAN.NOT.WAIT.ANY.LONGER!

Time to go get unschlumpadinkaed in honor of the lovebirds K and E!

As Much as We Can Hand-le

What’s been going on? About as much as we can, ahem, handle. Since we last left our heroes…

  • Exams happened. Post-exam bonfires happened. Graduation happened. We are trying not to think about the friends we’ve made who are seniors moving away…
  • Aaron has completed one year of seminary. One third done already. That had to be one of the fastest 9-month periods of our lives, especially the blur that was April. Did we even have an April? (Hard to be sure–the weather was playing February far too long.)
  • We got to have Chatterbox with us through exam week because her college got out earlier and she didn’t leave for Oregon until this past week. It was actually great timing because we could make her do dishes and watch Anna and generally be our indentured paid-in-cell-service nanny enough to keep the house functioning through the busy exam week.
  • We enjoyed some of the Tulip Time festivities, such as eating elephant ears, shivering through a parade, watching the Dutch Klompen Dancers klomp, and pitying that poor basset hound wearing Dutch garb.
  • My cousin Laura came through town in time for the parade, and the next day for Mother’s Day we gathered at my parents’ with my Grandma and Papa B., Grandma H., and Aunt Barb as well. I got zero rest that day but did score the iTouch I’d been coveting! The commuter’s sanity saver.
  • I was then brutally attacked by allergies and spent last week in a snot and Sudafed based fog. I also generally felt like my house and life were an out of control mess, which is not unusual but can get me feeling out of sorts when combined with not feeling great and not getting a chance to catch up, let alone look ahead. Even this weekend, although we had no big plans (except Aaron had a Classis retreat Saturday–part of the denominational ordination process is that and an exam he has Tuesday), I felt like I never unwound yet also never got anything caught up. Today I never really stopped either, but at least we have groceries and the dishes got done.
  • Last week, his first Monday of summer vacation, Aaron went to the hand doctor to score some more Vicodin see how his thumb is healing. The bone, okay. The ligaments, etc.,…not so good. So he had a CT scan Tuesday, another consult Wednesday, a visit to his regular doctor Friday. I should have gone so I could understand this better, but the ligaments are messed up and pulling his finger wrong and bottom line, there will be surgery involving pins and I presume some kind of Ligament Gorilla Glue. The surgery is Thursday morning.
  • Almost worse than the surgery is that for a week before and after, he has to be on even more hard core blood thinners than he’s usually on, so he has to give himself shots twice a day. What a cruel thing to tell a person to do. I feel bad that I can’t help, but it’s common knowledge that I faint at the sight, nay, even the thought of . . . hey, I just had the weirdest dream . . . Oh, right, as I was saying: at the thought of shots. So I’m useless as he’s being tortured. :(
  • But hey, at least we have group insurance now! (Seriously, I would be SO freaked out by now if we didn’t. And so bankrupt and living off the dole. On the dole? Is it on the wagon or off the wagon?)

That’s that. Please pray for Aaron with the shots and for the surgery to be even more successful than anticipated–it is the kind of thing where the doctor says it’ll probably need to repaired again someday (because of Marfan? I’m not positive).

Note for our Smallport friends: We are trying to get our Oregon visit nailed down but this kind of stuff keeps making it hard to get it done. We are thinking around June 3 or 4 to 14-ish.

A Word from Your Local Vicodin Dealer

It’s about three weeks from the end of Aaron’s semester. Hey, remember last fall, when Aaron’s first semester was coming to a close and exams loomed, and he slammed his finger in the truck door? Something just reminded me of that . . .

With tons of schoolwork looming, Aaron was in the library just about every night last week, and then he had a church men’s retreat scheduled for overnight Friday. Seriously impeding our progress catching up on LOST (we’re early in season 6–don’t say a word!). We were hoping to get some in on Thursday night after he got home from church, but he got home really late. And the first words out of his mouth?

“Don’t freak out.”

That is never good.

He’d fallen playing basketball with kids at church. Scraped up his knee as well as his hands but didn’t think it was anything more than that. But he was up all night with pain getting worse despite ice until finally at 4:00 a.m. I told him to go to the ER since he clearly needed an x-ray and wasn’t sleeping anyway. They put a splint on it but said it was not broken. He went to sleep at 6:30 and I went to work. Then around noon they called him and said, “Hey, remember how we said your hand wasn’t broken? It’s kind of the opposite of that, so please come back to the ER for a better cast.” He has a hairline fracture near the bottom of his thumb, apparently a bone which is important for circulation.

Tomorrow he goes to a specialist for a more permanent cast. Meanwhile he is still in pain and either unable to concentrate because he’s doped up on Vicodin or unable to think because he’s let it wear off (so he can think) and his hand hurts even more. And he’s frustrated because he has so many papers and tests due and it’s so hard to think and type.

So many fluke medical things this year–so frustrating we don’t know whether to laugh or cry or take turns. The end result is that (1) I am probably on some kind of “possible Vicodin dealer” watch list at the pharmacy and (2) next year he will not be allowed to leave the house without full helmet and pads for the last four weeks of any semester.

Law of the Land

It is true:

My family will never be uninsured again.

Even if we lose a job.

Even if I freelance.

Even if we move to another state.

Even if we have conditions, preexisting and not yet known.

It is the law of the land.

(Funny, I don’t feel less free.)

Thank you, citizens who said yes we want this. Thank you, community organizers. Thank you, members of Congress who fought for this for years and members who made tough decisions in the end.

Thank you, Mr. President.

Thank you, America.

Safe but Not Satisfied: Group Insurance and Health Reform

We are now officially covered by a group health insurance policy once again. Can I get a WA-HOOOOOOOOO!?

The difference between this plan and the one we were so graciously allowed to go to great lengths to obtain and pay for is stunning. I didn’t mention it here because it gets into a lot of TMI territory, but my husband had a health issue come up last month that he had to get checked out with a CT scan and then a test they had to knock him out for at the hospital. On top of lingering bills from the finger smashing incident, I have a bill from the CT scan for $927. I am sure the hospital bill will be a doozy. I fully expect that what we pay out of pocket (let alone the premium) for this one month under our individual policy will be less than our out of pocket maximum for the entire year under my work plan.

Which reminds me, I have to call my elected representatives and give them a hard time. It’s been a while. They miss me. (Especially Pete.)

Because even though we are now safely ensconced in a group plan, I am not forgetting about health care reform. I am not giving up. I am not willing to wait.

Because it could be me again that needs it. It could be you. It is me and you, because my company has been struggling to deal with the ever-rising costs, and I bet you have been choking on the costs too–even if you don’t see the numbers to realize that’s where the profits went, that’s where the raises went, that’s where the donations and the tithes went, that’s where the taxes went.

Right now I feel more safe but not satisfied. Why should I feel good because I now have what others don’t? Should I just forget what it’s like to dread opening those bills just because I now have a Flex account? Should I just pretend it’s suddenly not that urgent because it’s momentarily not that urgent for me?

No. I can’t, and I won’t. The world isn’t fixed when I’m doing okay and messed up when I’m not. I refuse to let my sense of personal customer satisfaction be the only barometer for what I think this country should do for its people, because I’m far from the least of these, even on my worst day. We never had it that bad, not even when we were most scared and most frustrated; we only got a taste of the helplessness and injustice many have felt trying to battle both disease and insurance at once. But it was enough of a taste to make me say enough is enough. It’s enough to make me keep fighting.

Let’s do this thing, America. Our future needs it, starting now.