On to Plan B

I’ve been spending a lot of time hiding inside my house lately. I still get out for knitting group once a week, and I’ve had some local excursions with friends here and there, but mostly I’ve been rationing my energy for the big eye surgery late last month.

Everything happened as planned and/or advised. My insurance company rejected the claim for the surgery, so I paid all the fees out-of-pocket. The costs I had to pick up not only included the surgeon’s fee, anesthesiologist’s fee, and the cost of the device, but also the post-op eye drops at the pharmacy. Thanks for really sticking it to me, healthcare plan! I hold out hope that with the device manufacturer and surgeon’s office continuing to pursue this I will eventually get reimbursed. In the meantime, my savings account is nearly $6,000 lower, BUT I will get cash rewards on the costs ’cause I used a credit card with a 1.5% reward on all purchases. #silverlining

Sadly (the crying and sobbing type of sadly), the procedure did not work for me. There were promising signs at first. The initial post-op visit the day after was good. The doctor was pleased with the pressure drop and he thought everything looked great. One week later I returned for another check. Again, we were really happy with the progress. The pressure had gone up to 16, which is in the desired range, and seems pretty normal for me. (My left eye — the unaffected one — usually has a pressure around there.)

But…but…this week I returned for another post op check and the news was not so good. The pressure was back up to 36, which is way above my target of 20 or less, and about where it was when I was initially diagnosed two years ago. The doctor did something very uncomfortable to my eye with a needle right there in the office (the eye was numbed, but I was still freaked out and required some literal hand-holding by staff), but that didn’t help one bit.

Now I am back on the glaucoma eye drops to bring the pressure down as much as possible. The doc says that I’ve formed a cyst that is preventing the current device from working properly. I’m just too “young and healthy,” as he says.

What’s next? Plan B is to have another surgery so the surgeon can implant yet another drainage device in my eye and remove as much scar tissue as possible.

There are some small mercies this time around. 1) The insurance company should not put up a fuss about paying for this device since it is older tech that’s been around for several years. 2) The surgeon had a cancellation on his calendar, so I won’t have to wait quite as long as he projected. Instead of a surgery date in October or November, I snagged a spot at the end of September.

What if this doesn’t work? I don’t know. There is nothing that can be done about the ICE Syndrome that caused the glaucoma. I don’t think there is any way of predicting how long it will take the glaucoma to progress to the extent I lose all vision in that eye, but that is the inevitable outcome of the disease.

I had all these thoughts that once I had my eye issue taken care of I could focus on getting rid of all the weight I’ve gained from forced inactivity the past couple years. There are no physical reasons I can’t go the gym and start making my body smaller and stronger. But there are other reasons why this isn’t happening for me right now. I’m sad and depressed. I need gentle encouragement, and a partner/friend who is similarly matched would help a lot. I simply don’t have anyone like that in my life right now, and I just can’t muster much energy to tackle that issue.

I can manage to keep most of my work commitments, feed myself and my dog, keep the house clean, and take care of my personal hygiene. Those are the only expectations I can place on myself right now.

So for now, my restorative self-care is mainly allowing myself plenty of naps, short walks with my dog, playing games with my dog at home, knitting and watching streaming entertainment, and reading when it doesn’t tire my eyes too much.

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The progress loop trends downward

I’m in a bit of a dip again. I was doing really well until a few days ago. Last weekend I was knocking it out of the park: quigong at the gym on Friday, a long walk on Saturday morning with a new walking group (social time and exercise!), all the eye drops remembered, sensible eating and drinking, and adequate rest. I had a fun time visiting with a friend in San Francisco on Sunday, and felt some good restoration from a weekend of self-care.

As last week progressed I started to lose my grip. My work days weren’t going as planned (Ha, ha, ha! When do they ever?!) and I’m worried about missing some deadlines now. The House passed that stupid healthcare bill and since I’m a walking set of pre-existing conditions these days and have several people I care about who are, too, I started to panic inside. I went to quigong on Friday again, but was having trouble maintaining my focus. By afternoon I had ENOUGH when a random dude on a bike stopped me as I was rolling my trash bins into my driveway. He offered “help,” which apparently consisted of telling me the best way to do it myself. I let him ride away a few feet before commenting out loud that I didn’t need to be mansplained how to deal with my trash bins. Later, as I pulled in the parking lot of the pharmacy to pick up prescriptions (of yet more eye drops, of course), some other dude tried to pull out in front of me. When I tapped the horn to get his attention he stopped, but then yelled at me through his open window that I needed to “Slow down!” I completely lost it at that time and hurled foul words in his direction out my own open car window (many juicy F-bombs were dropped) and continued to grumble as I exited my car that I was TIRED OF MEN TELLING ME WHAT TO DO!

I coddled myself Friday night by eating leftovers, not turning on the news (or the TV at all, for that matter), and consuming a stiff vodka martini. But I did myself a disservice by poking around too much online. I had bad dreams that night, and the imagery was pulled from my browsing history. I roused myself at some early hour from a dream where I was in a small camper/tiny house that was inside another building or warehouse and was being ejected through the wall by a malevolent force. The only good thing about the night is I managed to wake up just enough to break through that dream cycle, but not enough that I was fully awake and unable to get back to sleep.

Still, I dragged myself out of bed with the sunrise and managed to make the walking group again. I visited the farmers market and got some yummies, but didn’t buy more than I can consume this week, and then hustled home to cook lunch. I met with a (very strong) potential short-term renter for this harvest season, and had a short rest to make up for my broken sleep.

Last night’s social event was spent with a friend I’ve made through my local knitting group (and also the local UU church when I decide to attend). We spent the evening enjoying some take out Indian food, a small amount of wine, and working on our knitting projects while we watched a movie. I had brought over Moonlight, which I’ve had on request from the library for (seemingly) ages. Wow. I struggled with understanding some of the dialog, but still. Wow. I couldn’t help crying at the end. This poor young man was so lonely, and I associated with it maybe too much.

I had such high hopes that when sister had moved here for good that we would friends and I’d have companionship. But that hasn’t turned out to be the case. Of course. Those expectations were unrealistic, yet I can’t seem to shut off the part of me that has them. Just today as we discussed a possible outing together she started using a nasty, impatient voice and then turned around and denied her annoyance when I mentioned it and blamed me for having an attitude. The outing never happened, needless to say.

Here’s another thing: I’ve been dealing with a “crush” the past month. It’s stupid, really, really stupid to have an attraction like this. I’m too embarrassed even to write more details about it, quite frankly, but it’s there and I am trying to shut it down really hard and failing. The person I am crushing on has no reason to know that I exist, and I wouldn’t even approach him and make him aware that I do since I feel so rotten about myself right now and I know I just could not stand any rejection.

So, I really identify with this aspect of the main character in Moonlight. That longing for connection and loneliness that’s not there. That had been there for a brief time, but was lost. I wish I could just shut down any romantic notions I have and make them go away permanently. I’m swearing off any romance novels for the near future, at least. I just can’t let my subconscious get any ideas that I’ll be encountering someone as I go about my life where there is a mutual attraction and a plausible chance of a relationship. I’m trying to sternly keep myself focused on strengthening friendships and taking care of myself. Those are realistic goals, at least.

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.

The eye update

It’s been a while since I’ve written about my right eye. I just saw the local ophthalmologist yesterday for a work up, so now seems like a good time to do it. After seeing the doc I felt like I needed a big warm hug, which is a clue to me that my brain is trying to process through the possibilities we discussed. Writing usually helps me with the process, so here goes.

Way back when I was first diagnosed with I.C.E. Syndrome in October 2015, I thought I would need to have eye surgery within just a few months. In my usual, efficient mind-set, I was thinking I could just slot it in while I was recovering from my hysterectomy in December 2015 and not have to take any additional time off than the 6 weeks I was already scheduled to be out on short-term disability.

That didn’t happen, and in hind sight it was a good thing for several reasons. While it took me many months to adjust to the challenges caused by the corneal swelling and to find a medical regime that worked to keep my intraocular pressure (IOP) in the target range, I probably couldn’t have dealt with another health issue at the time. As it turned out, it was better for me to focus on getting my hormone replacement right, and to deal with the gut issues that kept taking me out of commission.

In the intervening time, I’ve been (mostly) quietly dealing with the progression of this eye disease. There are two doctors involved in my treatment: a local ophthalmologist, and another one in San Francisco who is a glaucoma specialist. The local eye doc is wonderful and can medically manage my condition; the specialist is primarily a surgeon and gets final say on when I’m at a point where surgical intervention is necessary, and which surgical procedure would be best for me.

Once I got the all-clear from the local eye doc, I had an optometry exam and got a new prescription and progressive eyeglasses. That’s helped a bit. One of my challenges, however, can’t be helped by eye gear very much.

My pupil is distorted in my right eye and can’t adjust as much as needed to changing light conditions. This means that moving from darker to lighter environments (or vice versa) is uncomfortable for me. Anytime I’m in brighter light conditions, I feel like my eye is being bombarded with light. (Because it is.) If you’ve ever walked into bright sunlight after being in a dark movie theater and had that “white blindness” feeling, that’s close to what I experience when I move from a dim indoors to outdoors, even on gloomy days. I got the types of lenses that darken in the sun in my eyeglasses, but that can’t take the place of a pupil that can properly dilate. Moving in the opposite direction (light to dark) has its own set of complications.

Cosmetically, the pupil distortion is visible, too, so I sometimes refer to my right eye somewhat jokingly as my “goat eye.” Not all people with I.C.E. Syndrome have visible changes in their iris, but the type of disease I have (Cogan-Reese) does have that result. The iris in my right eye looks darker and more blotchy. I have one dark brown spot in it, which my local eye doc says is actually not eye pigment, but is the actual muscle in my eye; the iris pigment has been completely worn away in that area.

I’m currently on three different eye drops (actually, it’s four meds since one drop is two medications combined in one) and my local eye doc tells me that I’m nearly at the end of the medical management options currently available. I’m going to try using one of the drops three times a day instead of twice a day to see if it reduces the IOP a bit, but that’s the absolute last option open to me medically. None of these meds are cheap, and it’s my bad luck the one he’s suggesting I increase to three times a day is the one that is the most expensive. It was $92 to refill it last time, and that’s with my insurance coverage. Yikes! (Yes, I did ask about a generic option and there is one, so I may start experimenting with it when my next refill is due.)

I had a thorough work up yesterday, including a visual field test and imaging of the optic nerve in both eyes. I’ve had the same tests done in October 2015 and October 2016, so we now have a chart showing how well my vision has been over time. It’s not terrible, but it’s trending downwards. My glaucoma is progressing, and since I’m still “fairly young” (just a few months away from 50) the doctor’s goal is to slow the progression as much as possible. He defers to the glaucoma specialist on making the decision about when to have surgery, but when he sends his notes and the summary of my tests, my local eye doc is clearly going to be suggesting surgical intervention at this point.

The eye doc and I talked over a few other issues and ideas yesterday, too. I asked about other treatments that would get straight to the root of the issue: the abnormal endothelial cells on my cornea which are causing the drainage issues in my eye (and, therefore, the glaucoma). He allowed that while there are surgeries to replace the endothelium, that’s not something that he sees as an option for me, but he’d ask the glaucoma specialist to weigh in.

Another option that the glaucoma doc will need to advise me on is whether it may be worthwhile to try anti-viral medications. While there hasn’t been a lot of research into this disease due to it being rare, some studies have suggested that EBV or HSV may play a role. Local eye doc says these are viruses that are present in most people, however it may be that sampling the eye fluid for them and then treatment with an anti-viral medication is something I can ask the glaucoma doc about.

One more issue the local doc wants the glaucoma specialist to express an opinion on is whether I should start using some eye drops in my left eye, too. I don’t have I.C.E. syndrome in that eye, nor do I have issues with the drainage angles, but I am showing some peripheral vision loss in it. Earlier this year he explained to me that the”cup to disc ratio” in my left eye suggests I’m more likely to develop glaucoma as I age, and since I’m already slowly going blind in my right eye, preserving the vision in my left eye as much as possible is his goal.

I see the glaucoma specialist in about a month, so I’ll know more about next steps then. In the meantime, I’m doing my best to deal with all this info and that I’m likely facing yet another surgery this year. I medicated myself with pizza and wine last night, but I’m thinking that I may need to find a local therapist soon. I’ve been doing my best to remain positive and resilient through all the health issues I’ve faced in the past three years, but sometimes it’s necessary to find professional help.

 

 

 

Extreme introverting

Yeah, I’m still alive. I just haven’t felt up to writing. I keep shying away from it again and again.

This winter has brought lots of rain, which is good and bad. The drought is officially over in Northern California, and we’ve been experiencing flooding instead. It seems that in the Bay Area, the North Bay in particular has been getting hit with more rain and our infrastructure is suffering. With every storm I get alerts about road closures due to flooding or landslides.

I took a brief break to visit with friends in Portland, Oregon around the New Year. We spent a few days near Mt. Hood and I did some snowshoeing for the first time. Trying to return home became an ordeal due to the weather. The first of a series of ice/snow storms hit Portland, closing the airport and the public transit system down. After enduring two cancelled flights, I decided that the only way to get home was via rail and spent 21 hours on the Amtrak (bracketed by Lyft rides) so I could get to Oakland Airport and retrieve my car. Yes, it was a real Planes ,Trains, & Automobiles experience for me.

It turns out I timed my escape from Portland perfectly, as I managed to slip out just after the first storm hit, but before the second one could cripple the transportation in and around that city, and through the Northern California corridors even further. My train journey was delayed only three hours due to the flooding in Northern CA; it could have been much worse.

Other than that I’ve been mostly holed up at home, working and entertaining myself with ebooks, DVDs from the library, and Netflix. I’m getting lots of knitting done, too, and am working on a baby blanket for a friend and a pair of socks for my sister. Both projects will take me through February and into March, I’m sure.

I took a small break from my extreme introverting to attend a resistance march last Friday night (in the pouring rain, no less) and the Women’s March here in Napa. There were an impressive number of people out and about on a day that kept threatening rain (and eventually delivered while the speakers were still going strong). I met a couple of friends from knitting group and we marched together, wearing our pussy hats proudly. I had picked up the yarn for my hat while in Hood River, OR at a small yarn shop. I was delighted that the bright pink colorway was called Liberally Bleeding Heart. It only took about two days to knit up my hat and have it ready for the march. I’m still wearing it as my go-to hat and probably will for the next four years.

I’m sure some of the reason I’m so low energy is due to the political events. It’s draining to me to see the progress made in the past eight years dismantled, and to experience the gaslighting and crazy talk of the new administration. (Enough said there. I just…can’t.)

Health-wise, I’m also trying hard to focus on the fundamentals: eat nutritious food (yet not too much), get the right amount of exercise, and get enough sleep. I’m doing pretty good with the food part, but the exercise and sleep parts are challenges. It seems that even one night of less than perfect sleep can mess me up for many days, and trying to make exercise challenging enough without overdoing it and causing physical discomfort has been hard. I thought I had been doing pretty well with my exercise level at the end of November/beginning of December, but then started having unusual pains in my lower abdomen near the surgery site. That made me back off completely for a while. Now I’m trying to figure out how to avoid that, while still getting myself back into shape.

I see this extreme introverting (as I’m calling it) continuing through the rest of the winter, at least. Maybe spring will bring some renewed mental and physical resilience.

How has your winter been?

Getting back in shape

Two years ago when I first arrived in Napa I was in pretty good shape. I had been following an eating and exercise plan and was within 10 lbs of a reasonable goal weight. (Which is about 10 lbs heavier than my absolute lowest weight; I’m nearly 50 and realize it’s unlikely I will be as thin as I was in my 20s.) I had been keeping my activity levels up by going on strenuous hikes about twice a week and using DVD or streaming video exercise courses at home.

Then my health challenges really kicked in. Five months after my arrival, I had my first diverticulitis attack in over a year. Three months later I had another. About three months after that my eye disease emerged. Then just a couple of months later I was hospitalized with my third diverticulitis diagnosis, and they discovered that I needed surgery to remove an ovarian cyst that had gone rogue.

My ability to stick to an eating plan that helped me keep weight off — lots of vegetables and protein, smaller amounts of fruit, and very small amounts of starchy carbs — was unsustainable while I was dealing with diverticulitis. The diet I had to follow during and for at least a couple of weeks after each attack required me to eat mostly starchy, bland food like white rice, white breads, and regular pasta. As much as I love all those foods they are terrible for my weight control.

Regular, vigorous exercise had become a nearly insurmountable challenge, too. Every time I had diverticulitis I was laid low due to the pain and side effects from the strong antibiotics and painkillers I was taking. Still, I had been able to keep in decent shape up until my hospitalization in December 2015, but it was all downhill from there. Abdominal surgery at the end of the year severely curtailed my activity for months, and once I suffered yet another case of diverticulitis a few months after surgery (my fourth case in a year!) I was done for.

Those are all the reasons I packed on the pounds again: activity and dietary restrictions and challenges over the course of an entire year. I’m up to the heaviest I can ever recall being and I’ve had enough of that. My wardrobe is down to the very few items (mostly stretchy clothes and a couple bras) I kept from the last time I was nearly this heavy. I refuse to buy more clothes since I have an entire closet and two medium storage bins full of clothing that would work for me if I just lost some of this weight.

The surgeon who did my most recent surgery has cleared me for all activities and exercises, so I’m getting back into regular workouts again. I’m being careful about it, though. I’m not only trying to claw my way back to decent fitness and cardio health, I’m also trying to avoid further injury (I’m still recovering from a bad ankle sprain).

Aquatic exercise is often recommended for people who need to be gentle on their joints, and I’ve enjoyed the few classes I’ve taken over the years so I decided to find a place offering aqua fitness classes. The week before I started back to work I visited three different gyms in town that have pools and offer classes. One of those gyms had a very high ($200!) fee just to join, and another was run down and grungy.

Luckily there is a new fitness club that is well-maintained, has two pools, and is only about a 5 minute drive away. The price is on par with the other two clubs with pools, and my employer’s fitness subsidy will cover almost half of the annual cost to maintain my membership. I secured a free weekly pass and tried a class before I decided to join.

 

My routine has been to go to the aquatic exercise classes three times a week. I’ve also taken some yoga classes, and will be giving the treadmills a try now that I’ve just received a new pair of shoes.

I know it will seem to take much longer to get the weight off than it did to put it on, but I’m hoping that I’ll be able to fit into the next size down by the end of January at the latest. I just need to be able to manage my energy better. There are days I come home from an exercise class and feel so tired that I just have to lay down for a few hours. That’s not very conducive to working and won’t be sustainable once the slow days around the holiday are over.

Time’s up

Today is my last day of medical leave. I’ve been off for six weeks and three days and I’m as ready as I’ll ever be to get back to my job.

What a disappointing week, to say the least. I should have been back to work last Wednesday, November 9, but I asked for a couple extra days when I last saw the surgeon. I knew I’d be up late watching the election returns and I wanted to be able to sleep in. Turns out it was a smart move in more ways than one.

Being in the Pacific Time zone, I didn’t have to stay up in the wee hours to see the general direction things were going. Election Night was also a knitting group night, and since we all wanted to watch the returns I invited people to my house. We started out happily enough at about 6:30 PM. As we watched the sea of red grow on the election map on PBS we got more subdued. When the results for Pennsylvania were posted we knew it was over.

I went to bed that night with 90% certainty that HRC lost the election, but I still had some hope. The next morning all doubts were resolved.

Since then I’ve been laying low. Partly because I’m depressed and distressed by the results, and partly because I’m relishing my copious free time while it is still available.

My recuperation from surgery has been pretty smooth, but despite spending so much downtime around the house I’ve managed to injure myself. Within a single week I whacked the baby toe on my left foot hard enough that I’m sure I broke it, and then misstepped in my driveway and sprained my left ankle badly.

(My left foot and ankle have sustained more injuries than any other part of my body. I first sprained that ankle when I was 10 and have lost count of how many times I’ve done so. The last time I injured that ankle was a fibula fracture two years ago. I got a ride to the local hospital for an x-ray just to make sure I didn’t fracture it again, and was happy to find out it was just another sprain.)

Since my mobility was restricted, I’ve been rather sedentary during the past six weeks. I watched a lot of streaming media. Read a few books. Completed the knitting, blocking, and sewing up of two sweaters. Made good progress on a third sweater, and restarted knitting on a little shawl that keeps confounding me when I check the stitch count.

I’m not sure if I’m mentally ready to resume work now or not, but that doesn’t matter at this point. I think I’ll go set the alarm now so I don’t forget.