Pulling myself up

I’ve made some progress in pulling myself out of my funk.

First, I found a local therapist. I’ve only been to see her three times; not enough to know if she’ll be the right “coach” for me to get through this malaise, but enough to know that I’m at least comfortable with her. At our first appointment I laid out some key facts about what’s been going on, and at the last session I talked about my goals. I see her again tomorrow after a break of about three weeks, so we’ll see if we can pick up the threads quickly or need another session to get back into a groove.

I also saw the glaucoma specialist and he confirmed that I will need to have surgery in the coming months. We don’t have an exact timetable yet, he’s just said “this summer.” He is strongly suggesting that we use a new device called the Xen Gel Stent that was only FDA approved last November instead of a standard glaucoma drainage device. Why? With the new stent the procedure will take around 20 minutes and the recovery period is just a couple of days. Implanting a legacy device involves about 2 hours in surgery and a recovery period of roughly two weeks. Since there’s no cure for this disease or way to turn the aberrant cells “off” I need to be prepared to have another surgery in about 10 years, so keeping the trauma to the tissues minimized is for the best all around.

I did ask him questions about anti-viral meds and cornea transplants to treat this, but like the local ophthalmologist he didn’t think either of those approaches worth pursuing. While it’s possible that the disease was caused by my body’s reaction to a virus, he said the virus would be gone and this is just an effect it left behind: mutated cells. For this same reason he said a corneal transplant isn’t much help now. The mutated cells have already attached to other structures in my eye like my iris and pupil and it simply isn’t possible to remove all the aberrant cells.

We also talked about my pupil distortion and inability to properly process light which leads to this “white blindness” effect. He said that it would be possible for him to stitch my pupil into a fixed position that made it less uncomfortable for me to be in bright(ish) light, but that I would then have problems in the dark. So essentially it’s a wash. I’m just going to have to keep dealing with that effect and learn to live with it.

If it weren’t for the fact that it is questionable if my insurance will cover the stent we’d be ready to go. But, since it is so new we’re not sure if they will pay for it. His next steps are to work with the insurance company on trying to get it approved. He also wants to put out a message on “the boards” to see if anyone else has used it in a patient with my particular eye disease. It’s very likely we would be the first since the device is so new and my disease is quite rare. He could get a nice conference paper and presentation out of this, and maybe I can somehow get it done for a reduced cost? Ha, ha, ha. Probably not.

The doc has warned me I should be prepared to pay out-of-pocket for the stent and that it would likely cost around $4,000. It’s a good thing I have a well stocked emergency fund. I’ll use as much of my FSA as possible, but since I’m only allowed to withhold $2,550 per IRS rules and have used some of that for co-pays and meds, most of the cost would have to come out of my post-tax savings. This is the sort of thing that’s worth the expense, though. I’m getting used to not taking vacations and spending all my typical vacay time and funds on medical procedures and surgeries. *sigh*

Speaking of surgeries, I had a little “ah ha!” moment recently about my difficulties getting exercise. When I first tried to get back into some sort of workout regime I was focusing on “easier” exercises like aqua aerobics and yoga. But I was having pain in my lower abdomen and feeling like I had to pee every hour. Once I stopped all exercise except for walking all the pain and problems went away. Walking isn’t enough to help me get the weight off, though, so I had a visit with the gynecologist (who is a fantastic doctor) and asked if there was some sort of physical therapy that would help and she said yes. I got a referral for “instability of the pelvic floor” and will start therapy in a couple of weeks. I wish it was sooner, but that’s the earliest appointment the local hospital/rehab facility could offer me.

The perpetually grey skies and daily rain have finally gone, too. We’re easing our way into warmer days and the sun is out most of the time now. This is also helping my mood. I’m happier when it’s sunny and dry.

There’s more to write, but I think I’ve done enough for today. If there are any readers left, I’d love to read your comment on how you’re doing.