Seeing Eye to Eye

I saw my Retinal Specialist last week and there’s good news and really horrible news. The good news is, the hole has indeed closed, and the gas bubble is gone. Bye Bye Bubble Boy. Bad new? I have a cataract forming in that eye. Yeah, I know, I need to find myself a religion to follow quickly because clearly I’m not living right.

Cataracts are a known and likely side effect of the vitrectomy surgery. Though typically they don’t form until 6 months to a year and up to two years after the surgery. So I was prepared to have it develop, but you know me, gots to get in firstest with the mostest!

No matter what you do, don’t look up cataract surgery on YouTube. Don’t ask me why, but the visual of having part of your eye ball sliced off with a scalpel is almost as horrific as the visual of having tubes stuck in your eyeball.

Anyway, so the cataract has not developed enough yet for me to have surgery, plus, my eye isn’t healed enough either. So I go back in a few weeks to see where we are. Then I’ll be referred to the cataract specialist. Giving how long I had to wait for the retina surgery we’re probably talking well into spring before I have surgery.

Apparently I will need surgery on both eyes, so my lenses match. I’m trying not to think about that, but given I can barely see, and dreading makes me dizzy, thinking is about all I can do. I go back to work next week. Still working from home, so grateful that I’ve been able to work that out. Driving is not a thing that’ll be happening anytime soon. Tried just moving the car for the roofers last week and dear heavens, it was bad!

As far as my vision goes, yeah, my right eye is mostly ornamental at this point. I still have the funhouse mirror effect, along with blurred and cloudy vision. Yes, Dear Reader, my eye sight is actually worse than it was when we started on this long strange trip!

And I realized I owe y’all an apology. I promised Raspberry Sorbet would be out before the surgery, but no. My vision deteriorated so quickly I couldn’t finish the book and I didn’t want to put out an inferior product. I’m sorry, if I have any fans left, I sincerely apologize. I have NO IDEA when, or even if I’ll ever write again. I have so many books planned for y’all and all this is driving me crazy.

As the Eye Turns

Visually my eye is more or less back to normal. It’s not red anymore. I still put drops in three times a day. I thought I’d share a visual of my charming Medic Alert bracelet because apparently if mishandled my eye could explode. Highly unlikely but I do like the drama of saying that.

The latest in chic jewelry…

The gas bubble is about 2/3rds of the way down. It’s like a half-moon at the bottom of my line of sight. As it has shrunk the glare off it has steadily worsened though the vertigo it caused is better.

It’s clear now that the visual distortion is still there. So now it’s like looking through a funhouse mirror only now with added glare! It will take months for the damage to my retina to right itself and I will probably not get my vision back totally.

You know me I’ve read everything I can about this issue, so I knew going into this that the surgery was more an issue of stopping further damage than correcting the damage already done, but it’s still hard to deal with suddenly having a disability and to your eyesight no less.

I’m really struggling with this. Not being able to drive makes me feel like I’m under house arrest. And don’t even get me started on possible job loss. It’s devastating.

Is That Prone or Supine?

This will be my last day of face-down posturing after my surgery on Wednesday. I have to stay face-down for 45 minutes of every hour. (Yes, that includes sleeping). That’s so that the gas bubble in my eye will remain pressed against the surgery site.

With time, possibly a few weeks, the gas will gradually dissipate and my body will make more vitreous fluid to fill the cavity.

Did I tell y’all vitreous fluid looks like egg whites? Yeah, I woke up toward the end of the surgery and could see the fluid and the instruments in my eye! And yes I asked my doctor what would happen if my body didn’t make more fluid. He looked at me like I’m an idiot, rolled his eyes and said that’s never happened, but if it did he’d write a journal article about it and I’d be famous. My doctor is a bit snarky, yeah?

Right now I can’t see anything out of my right eye. And I’m getting damned tired of it. I’ve essentially been blind in that eye since November but yeah, this is worse because at least I had a little peripheral vision to keep from walking into stuff. Now I’ve got nothing.

It’s interesting though because I can watch the bubble gradually dissipate. It’s like looking through a glass of water that’s draining bit by bit. It’s aggravating and fascinating at the same time. The bubble moves though and is ridiculously distracting.

Anyway I’ll keep you posted. No more pictures because there’s really not much to see. My eye is swollen and a bit droopy. Definitely red, but hardly sympathy-inducing. Mainly I’ve been sleeping a lot. I hadn’t realized how exhausted I was but straining to see is wearying. And I don’t sleep well because of the face down thing. Hopefully tomorrow night will be bliss!

Healthy Beverages

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I’ve been working on drinking healthier beverages. As a lifelong southerner, I, of course, love sweet tea, and I’ve finally got to the point where I can drink it sans sugar. Yes, I know that’s blasphemy, but hey I’ll gladly relinquish my southern card for a few more decades of LIFE. Also, I bought these carafes at Target. They cost about $5 and I keep them on my dining room table filled with ice water. Every time I walk by it looks so refreshing and delicious I have to have a glass. Whit says the same thing, so we’re both drinking more water.

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I also discovered the deliciousness that is Tazo Passion tea. It’s an herbal blend and so yummy. I make a concentrate of two quarts of water to about 4 tea bags, then I add that to my regular tea for a flavor boost. Or to my Lacroix water for the same. Sometimes I’ll mix it with a little lemonade for a special treat.

e4I love Lacroix water it’s carbonated but has no sugar or sweeteners and just a touch of natural flavor. The raspberry cranberry is incredible, but I like the grapefruit as well.

Finding Some Me Time, HELP!

Last year was very hard on me. I severely underestimated what a time suck a new baby would be, and frankly, I’m exhausted. And little wonder. I average about four hours of sleep per night. Typically I write at night after the kids are in bed. I’m lucky in this regard as both are usually asleep by eight. Then Whit and I have our time before he goes to bed at ten. I’m rarely in bed before one, and have to be up at six to corral Loud Azz Boy #1 to school. Then I have to LAB #2 up and feed him. Then off to school. Then back home. Kell takes two naps a day, and that’s usually when I do housework. And he goes to physical therapy as well. That being the case I have no time for myself, and am always tired. What do I do when I’m tired? Eat. Mostly carbs. So right now I feel awful and school starts next week plus Luke is in club soccer, which means two evening practices during the week and at least one game on the weekend.

So, I’m thinking about getting up earlier. Maybe five o’clock in order to get some exercise, prayer and meditation time in. I would love to take morning walks by myself. I haven’t been alone for nearly two years. For an introvert like me that’s horrible. I can’t workout at night. It triggers my insomnia. My main problem is that I can’t wake up that early on my own, and if I set the alarm, that will wake Whit up. Does anyone else do this? How have you found time for yourself? I’ve got to do this. I feel and look bad. My hair is coming out. I’ve gained weight and I’m always tired. Help!

More on Hypotonia

Kell had his first appointment with the physical therapist on Monday. She was very impressed with his progress! Seriously he was in a great mood and my little dude put on a clinic! He showed her stuff I didn’t even know he could do! When he was assessed a couple of weeks ago, he couldn’t pull up at all, but on Monday he pulled up easily on this low bench she had, and now he routinely pulls up in his crib! His feet aren’t turned out as much when he stands and he just seems much sturdier. This is so exciting. I told the therapist who assessed him that he was born with torticullis and we did his therapy at home and corrected it within three months. She thought that was awesome and she thought we probably wouldn’t have to go to physical therapy every week as we’re so motivated. With the torticullis I did the head turns and stretches every time I changed his diaper. And I did a lot of baby massage focusing on his neck, back and shoulders, since that was the injured area. I have no idea if that helped, but he certainly loved it!

With the hypotonia I work with him twice a day on the floor for an hour. It’s better than the torticullis therapy because this is more like play and he doesn’t cry unless he gets tired. I try to watch his cues; finger sucking, lying down or just cuddling against me, and call a halt before we reach that point. We don’t have a low bench, but Luke’s tabletop air hockey table is just the right height for him to practice pulling up. The therapist said it’s not a good idea to buy (very expensive) specialized equipment because he’ll be going through these milestones quite rapidly. She also said that he should be walking fairly soon since he’s improving so quickly. I was really worried about that, on the boards for children with hypotonia some of the children didn’t walk until they were nearly two.

Kell had his 12 month visit with his pediatrician yesterday, and the doctor seemed impressed with Kell’s improvement. He also said he knew that with my compulsiveness Kell couldn’t help but get better. I think that was supposed to be a compliment, I think. I’ll have you know I’m not compulsive, neurotic as all hell, but not compulsive. He still says Kell won’t be much of an athlete, but that’s not really what I’m worried about, though that is a concern in this sports mad family. Hypotonia can impact his cognitive development and self-esteem. His brother is such a little jock, and has been nearly from birth. I don’t expect Kell to keep up with him, apparently the Luke is some type of phenom, but I would hate for him to be left out of sports entirely if he has any interest. With any luck he’ll lean more toward the artistic side. He’s more mellow, whereas Luke has always been hyper. It would be great to have a child with an interest in music. Luke loves it passionately, and I want him to have piano lessons, but I can’t imagine him sitting still long enough. The boy doesn’t even want to sit down to eat and even does his homework standing!

The worry is very wearying. Though I know that as a mama it’s my lot in life to worry, sometimes it’s very hard. Then I see these kids at the clinic who are in far worse shape than Kell is in, and I feel like I’m just being ridiculous. Hypotonia can be addressed in physical therapy and I’m beyond blessed to have two fabulous basically healthy boys.

Dear Dr. —–,

I’m afraid I’m going to have to quit you. You came highly recommended. And I like you a lot. But it’s just too goddamned hard to get in touch with you. Considering what you charge, I expected a greater level of contact.  I realize I’m in the big city now, and doctors of your caliber are in high demand. However, I am accustomed to a doctor who is attentive to my needs, and if I have to return to Huntsville to receive that, then that’s what I’ll do. I’m a well-informed educated patient, and I know this is a serious situation. Waiting nearly three weeks for an appointment is simply out of the question. I’m accustomed to having a doctor who is available, and nurses who return phone calls in a timely manner. Again, you come highly recommended, and I’m sure this will mean nothing to you, but goodbye, it’s been real.

Sincerely,

Your former patient