Four Years Post-op

Sunday morning I stood up in front of my Fellowship, lit a candle for myself, and explained that four years ago at that time, I would have been part way through a ten hour brain surgery to remove a massive brain tumor. This was the first anniversary year when I truely felt like celebrating. This September 22nd was more of a second birthday than just a bittersweet reminder day.

I remember in a vague, hazy way waking up post-op, somewhere between the OR and the ICU. I imagine the way I felt was similar to that of how a newly born baby must feel. My head was heavy, swollen, and mangled. My lungs were wet and I coughed and struggled (though I've never seen a new baby reach for the stethescope of a nearby staff member and put it on her chest). I felt confused, overwhelmed, and angry. Most of all angry. I had been pulled from this glorious sleep and forced into the light and told to be alive and fight for myself. No machines would do it for me.

So, despite the anger, that's what I did. Like a baby, though in a much abbreviated and significantly more aware way, I learned to swallow my food, to speak in an understandable way, to focus my eyes, to walk and move my arms and legs smoothly, to pee on my own, to think and process and pay attention.

I won't deny that there have been days in the last four years when I questioned whether it was worth it to have had surgery, and worth it to fight. The last four years have undoubtedly been the most difficult of my life. I feel and think differently than I did before surgery. After the obvious recovery issues that everyone could see on the outside (those survival type skills), there has been so much recovery to do on the inside. Additionally, where recovery has not and will not be possible, I've had to learn and develop adaptations. The chronic issues that have ensued following surgery have not assisted in this process.

At four years post-op, however, I know it was worth it to fight. I will never be my old self, but, despite the changes and my limitations, I am learning to be okay with the 'reborn' me. I'm now becoming comfortable with knowing my true limitations. If nothing else, I can laugh at my downfalls. Sometimes there is nothing else that can be done. Not everything can or even needs to be fixed. I said it myself the night before surgery, "It just is, and it's great." (In hindsight, I laugh when I remember how I prefaced that thought with regret over not having had a "spiritual epiphany".)

Things currently stand at a happy, though maybe a little bit unsure, place. I've been off all medications and following the "just be okay" plan for about a year now. I was so delighted in August when I realized I'd gone a whole year without one single doctor's appointment. Whether it's truly a good thing to have gone this long without seeing any sort of medical professional for anything is a bit questionable, but I enjoyed the brake anyway.

I continue to be plagued by headaches and realize that chronic migraine will be a forever part of my life. I wake up most days with a headache to at least some degree, and will feel it come and go throughout the day. The frequency of my true migraines varies significantly from week to week. Some weeks will have three or more migraine days, some just one or even none. When I have a true migraine I will sometimes take a Motrin or Tylenol, but other times just wait it out. Once recently, I was desperate enough to take a percocet. I don't get any sort of aura that a migraine is coming, but do have the classic sensitivity to light and sound. I get confused and "fuzzy headed". Afterward, I get a postdrome where I am exhausted and somewhat useless. Sunlight seems to be a significant migraine trigger. I try to keep sunglasses on my vampire eyes as much as possible.
On the plus side, being able to keep a decent attitude and maybe even a little bit of a smile through such significant pain is an awesome skill worth having and developing. I like to think it makes me a little more of a better person.

In my last post, at three and a half years post-op, I happily declared myself cured of autonomic neuropathy. It turns out, this isn't quite true. While my symptoms continue to be significantly improved from when I was on migraine medications, and I'm sure I no longer qualify as POTS, I'm also sure that I do have autonomic issues. The heat and sun of summer brought a relapse of many symptoms, including not just increased headaches, but also dizziness, exhaustion, weakness, temperature intolerance, and nausea. For many weeks, I was again unable to exercise due to plain exhaustion like cannot even be described. In the future, I'd like to live somewhere cooler and more temperate, but I doubt that will ever actually happen. I have no idea where the best place for me would actually be.

I try to stay relatively well hydrated to help with the dizziness. It is nowhere near as severe as it had been, but I caught myself squatting down in the kitchen while making breakfast a couple times in the last few months. If I can get myself to exercise, it helps with the exhaustion, but sometimes I just have to wait the exhaustion out. It's kind of a vicious cycle, the exercise vs sleepy weakness. I know that, even without my autonomic issues, I will always require more sleep than most people since having had brain surgery. At least now I'm usually good with a stable 8am wake up time, and no longer fall asleep anywhere and everywhere.

I never know if I will be hot or cold, or if my feelings of hot or cold will correlate with actual ambient temperatures. Wearing layers helps.

I get nauseated pretty much every day, most often in the 10am hour. No amount of small, frequent meals or high protein snacks seem to help. I've started chewing ginger candies, which does help, but it's frustrating to feel so bad so much of the time. My entire GI system in general is kind of a mess. Restaurant food, in particular, seems to make it unhappy. I keep my bag stocked with a good supply of Immodium, Pepto, Tums, etc. If you're ever not feeling well, I've got you covered.

The most frustrating "invisible" type thing for me has been the slower processing of my brain. I can't keep track of things the same way I used to. My memory is notoriously terrible. Worst of all, I've been having trouble from time to time with word finding. Matt says that sometimes in conversation the responses I give don't always make sense. I've had a couple upsetting moments when it was difficult to read out loud to the kids. I'll stumble over words, or the words seem to move around the page, or I'll see them and know them but can't get them out. There was one particularly scary time when I lost my words while talking to the kids, and as I tried to stumble for them I just couldn't find them. I had a general idea of what I wanted to say, but no idea how to get the words to come out. It was terrifying. Matt looked worried and asked if I was okay, and all I could do was shrug. Luckily that's only happened once.

Still, I feel so much less intelligent. My vocabulary has suffered in general. I can't concentrate long enough to read a book. Many things I do learn, I don't retain. I'm happy for the internet being there to let me look up random things whenever I need to, and not judging me that they are things and words I should know (and do somewhere deep down).

Being deaf in one ear is both not that bad and worse than I could have imagined it being. The white noise hiss in the "dead" ear is forever present. I can't handle a bunch of other ambient noise. Even the hum of the dishwasher is upsetting when I'm trying to listen to a conversation or TV. I'll generally try to avoid noisy places like busy bars or restaurants. All the noise is so disorienting that I begin to feel confused and dizzy. Being unable to locate sounds can be upsetting as well. Still, I can talk to people, hear the world, and listen to music, so it's not that bad.

My left eye is holding on and stable as far as I know. I've been a bad patient and not been to see Dr L. I still use Refresh Plus eye drops between 1-3 times a day, and thick, nasty ointment at night. It sees fine (with glasses) and doesn't usually hurt or burn toooo much, so I can't complain. I hate the gold weight and the tarsorrhaphy, but it's better than the terrible pain of a slowly dying eye, or a corneal transplant.

My face is what it is. This has been the hardest emotional item to tackle and get used to as being the new normal. I hate pictures of myself, and cling to any I have from pre-op. I'm sad that a lot of the people I now know never knew my "real face". But, no one treats me differently, despite what I see as an obvious, disturbing crookedness. I guess I can see this as a good thing. Anyone who is going to judge me by my lopsided smile and confused eyebrows (yay sinkinesis!) probably isn't someone worth getting to know anyway. I may not be beautiful in a scientific way, but great personality traits like being lighthearted, caring, and a bit of a bad-ass are even better, right?

The most important thing is, that at four years post op I am the healthiest and the most at peace that I've been since this whole ordeal began. I'm no longer angry. I no longer question whether it was worth it to fight. It just is, and it's great. I do question what my next MRI could potentially show, but I also know that if I have to I will be able to fight again, and it will end in just as much dance party as I had by myself last Sunday.

Of course, there would be no celebration without my amazing support system. I could not ask for a better husband, parents, and family. Co-workers and friends have been incredible in supporting and remaining confident in me. I'm lucky to have added, over the past 6 months in particular, to the people I can count on in times of struggle, and I'm looking forward to many more celebrations in the future.

A Week of Wonderful Weather

What lovely weather we've had for the last week! Some of the days it was almost too warm, but we managed to get out a do a number of things outside the apartment and enjoy some family time.

Saturday we all went out to the movies. The kids had gotten theater gift certificates for Christmas and The Big One chose to use his to see "The Croods". It was a decent enough kids movie. The visuals were really nice and inventive, and the story was a neat idea, but overall it was a lot of the same kinds of things happening over and over. Even the kids felt that way. It was family friendly, though, and had some cute moments. I may have cried, a lot, at the cheesy Disney-like ending.

With his Christmas gift certificate was also a coupon to have dinner out, so The Big One picked a great local seafood joint called "Red Lobster". It was a fine choice by me for the cheddar-bay biscuits alone.

We had a couple trips to Fort Fun this week, which is the kids favorite park here so far. One evening we went after dinner so Matt could also come along. Tuesday was (or would have been) my grandmother's birthday, so in her honor I wore sparkly earrings and a necklace she'd given me and we went to walk on the beach. The Little One wore sparkly jewelry as well, "So I can be beautiful like you, Mommy!" I thought about how much my grandmother and the sassy Little One would have gotten along.

Fort Fun and Huntington Beach

Grandy, me, and Poppy, circa 1986

Wednesday and Thursday we had our first full two-days with Matt that didn't include 4-8 hours of driving, since he left for job training mid-January. The weather stayed sunny and went from mid-70s temperatures to mid-80s, so we went to Virginia Beach. Well, we didn't really know we were going there originally, but we wanted to go exploring. We drove down to downtown Hampton, didn't see anything to do, and so decided to keep on going. The kids were not thrilled about our "adventure". Luckily, I had packed snacks.

At the beach we played tourist and walked along the boardwalk and the main street, getting salt-water taffy at Candy Kitchen and frozen custard at Kohr Brothers. We were not the only ones who had the idea to go to the beach. I wondered if people took off work or school just to go outside. It looked like it must have been mostly locals out, and I quickly learned that the beach magazine we were handed was a marker for people from other shops to come out and try and sell stuff to "the tourists". So next time, we go as locals.

On the way home we decided to get dinner before making the trek back to the peninsula, as we've heard retched things about the bridge-tunnel traffic at rush hour. We figured if we were stuck in an hours-long back up, at least we wouldn't be hungry. We went a little out-of-the-way and stopped at a place my cousin recommended called Woodchicks BBQ. I love barbeque, and it was totally worth the stop. Yes, I eat mostly vegetarian, but for barbeque, I make an exception. I got something called a BBQ Sundae, which I ate until I made myself quite sick. I took the picture in the collage below after eating off the top layer of meat. It was really packed in there. Not even The Little One complained about her dinner, which is truly rare. Thanks for the recommendation, Ryan!

We took a kind of backwards way home and had fun trying to hold our breath through all the tunnels and make wishes. I made it through two tunnels with my breath held the whole way, so I get two wishes!

This week's homeschool park trip was to a new (for us) park called Deer Park. They had some equipment I hadn't seen before, like this giant nest-like swing, and some classics I haven't seen in awhile, like a merry-go-round. I managed to spin Brodie until she flung off and bit her tongue, and reminisced about the merry-go-round my cousins, brother, and I used to play with at our family's farm. If someone didn't fling off get hurt, you just weren't trying hard enough.

Matt and I also got a bunch of little paperwork type moving things done. We got new licenses and plates for the cars. We really live here now! It was a bit of an ordeal, though. Thursday I got up early to be at the MVA when it opened and sat and waited until they announced that their computers were down and we were welcome to wait but they had no idea if they would come back up. So I left and tried another MVA. I followed the directions on my GPS, parked, and followed the signs with arrows pointing "MVA this way", but after 20 minutes of walking around I never found it. I decided to give up and just go home. At that point it was late enough that even if I found another MVA location, it would probably be mobbed. I laughed at myself for wishing in the tunnels for "patience" - like in story books, you have to be very careful with your wishes and the way you make them, as they just might come true, and not the way you want.

I got it all done the next day, though. I always have a chuckle at people who have to take pictures for IDs, as they always repeat mine looking to get a better one, and it just doesn't happen. This lady advised, "Try to keep your lips together." Of course that can't really happen. When my picture still wasn't good on the second attempt, she looked down at my old ID and I guess saw that that's just how my picture is and gave up. Sorry, lady.

After the successful MVA trip I played Super Mom and baked chocolate banana oatmeal muffins, made a big salad, cleaned the apartment, washed everyone's sheets and my laundry, baked hot dog and hamburger rolls, and did school with the kids.

Somewhere between the heat and the sketchy amount of exercise I've been getting lately, I ended up with a couple of migraine days this week. One night, to try to calm my head before bed, I decided to paint. I started just painting random warm and cool colors, and then kind of ended up with these bison walking on water. The one is a little stumpy, but that's okay.

I really need to add more cardio to my exercise routine. I think the improved blood flow and cardiovascular fitness really helps my headaches. I had been doing sets of jumping jacks, high-knee marching, and running in place in between my weight sets with my previous routine, but with being in an apartment now I can't do all that banging around. I've been too scared to go to the community fitness room, so today Matt checked it out and found there was no one there. I ran on the treadmill for a bit. I've read good things about tabata training, so I'm making my new goal to be able to sprint for all 8 rounds. Today I got through 5, but had to take a break before completing the last 3.

Three and a Half Years Post-Op

Just over three and and half years ago I had a 10-hour surgery to remove a massive brain tumor. The tumor was a vestibular schwannoma, an overgrowth of the schwann cells that surround the vestibular nerve, which is one of a pair of cranial nerves that helps control balance. These tumors start in the portion of the nerve near the ear, and grow along it's length toward the brain stem. I documented the experience on a separate blog called Bug In The Brain, but haven't posted an update in a year, so I'm long over-due.

Here is some background for anyone who hasn't already heard the beginning of the story:

The vestibular nerve runs along the facial nerve, which is part of a pair that controls facial movement, and the cochlear (or auditory) nerve, which controls hearing for the ear to which is it attached. Because the cochlear nerve is also referred to as the acoustic nerve, vestibular schwannomas can also be known as acoustic neuromas. The above picture shows the relation of the nerves to each other as well as to a small acoustic neuroma. This picture is courtesy of http://www.anworld.com/ and is copyrighted to the Acoustic Neuroma Association of Canada.

My tumor was discovered in the emergency room, almost as an incidental finding. My main symptom was months of headaches, which I consistently wrote off as due to stress, lack of sleep, or needing new glasses. One day, however, I got a fever and started feeling just bad. I went to the clinic mostly just because I needed a work note for calling out without giving enough notice, and the NP advised me to go to the ER if I wasn't better the next day. It's probably a routine thing they tell everyone, but I happened to be a compliant patient this time, and happened to mention to the ER nurse that my headaches had been doing on for awhile, and they thought maybe they'd just check that out with a CT scan. I left the ER with paperwork listing my diagnoses as 1) UTI, 2) brain tumor.

It's hard to get a good photograph of an MRI, but the tumor is shown with the red arrow.

My tumor was very large and was already displacing my brain stem. The CT results listed the dimensions as 4.5 cm x 2 cm. At surgery I believe they said it was closer to 5.1 cm x 3.1 cm. Anyway, it was big for the type of tumor it was.

So it was crazy times for awhile. I had the surgery. They took out the tumor and a chunk of cerebellum that had been damaged by the tumor (or possibly by surgery, I'm not really clear on that). My left ear became permanently deaf due to damage to the auditory nerve. The left side of my face was paralyzed but the facial nerve was left intact, with some hope of future improvement. Everything was spinning all the time, and of course it hurt. I couldn't get up and walk around on my own and my left side (arm and leg) dragged. I failed my first swallow test and passed the second, but was only allowed to eat a "mechanical soft" diet. Even that took some practice. I was so nauseated and exhausted.

I spent 2 days in the ICU, 4 days on a neurological care unit, and 2 more weeks at my parent's house. I couldn't take care of myself, much less my kids. Over the next six months I had a number of procedures to protect my left eye from drying out (due to facial paralysis and not being able to close my eye). I also completed physical therapy, occupational therapy, speech therapy, and a couple sessions of emotional therapy.

Eventually, I went back to work, but I knew I wouldn't be able to hold out as a floor nurse forever. Things were not the same. My head hurt all the time, I tired easily, and I struggled emotionally with returning to a job I didn't love after "facing death". Matt started working towards a career that was supposed to take 18 months of training, with one of the goals being that eventually I wouldn't have to work, or at least not as much. I tried not to struggle while I was actually at work, but my exhaustion would show when I got home.

After a year of a headache that wouldn't go away (Yes, a year. I'm not even being sarcastic.), I went to see a neurologist. She started me on a medication called Nortriptyline to help prevent headaches, and Imitrex to stop a headache that had already started. At first the medication would just make me sleepy, then I would acclimate to it and it would help, and then after a few months the headaches would return. I would go back to the neurologist and she would increase the dosage, and we continued like that for awhile.

Through this period of ups and downs there reached a time where I began to feel really bad. I was nauseated again, my headaches were back full force, I was completely exhausted, and there was a new thing - chest pain and palpitations. I had been exercising regularly for a month or two, but suddenly found myself unable to do the most basic routine due to exhaustion and a racing heart.
During a trip to the neurologist my heart rate was in the 130s. My neuro did a couple quick in-office tests and believed the cause to be a whole different neurologist condition called Postural Orthostatic Tachycardia Syndrome (POTS). POTS is a form of dysautonomia, a collection of conditions caused by the malfunction of the autonomic nervous system. The autonomic nervous system controls vital and automatic functions such as heart rate, blood pressure, digestion, and sweating. Patients with dysautonomia can show a number of symptoms related to these various systems, including dizziness, chest palpitations, weakness, nausea, headache, bowel disturbance - all kinds of things that I had. The neurologist prescribed propanolol to hopefully help lower my heart rate and better control my headaches.

I began to bounce from doctor to doctor, some convinced there was something wrong with me, some convinced I was "fine". My general practitioner was the most sympathetic, seeing that I was clearly struggling, but was unsure how best to proceed. She did write me a note to switch from night to day shift, which of all the things different doctors tried, made the most difference in improving the way I felt. She also started me on fludrocortisone, though it was meant just to help temporarily while the specialists figured things out. I went through series of tests with cardiologists, electrophysiologists, and neurologists, and had all the blood work anyone could think of. The cardiologists couldn't find anything wrong aside from my racing heart, and basically told me in different words to "get over it" and call them "if things get worse".

Finally, I had testing specific to dysautonomia, generally described to me as "autonomic testing", and was told I had "autonomic neuropathy". A number of my test results were abnormal, including my sweat and cardiac responses. I saw the specialist right after the testing, so I assumed my test results were significant. He told me to drink tons of water, increase my sodium, and excerise. I was to start with something like a cardiac rehab exercise program, and work my way up. He told me my problem was "more serious than POTS" and said I would have to be especially careful not to overheat in the summer. I would see him again in 6 months, his next available appointment.


Here is where I left off with my last blog post one year ago. Miserable and confused.

With the psudeo-diagnosis of autonomic neuropathy, I tried to follow instructions but found myself having continuous ups and downs of "okay days and bad days". My neurologist increased the doses of propranolol and nortriptyline. Some days I would be able to drink up to 3 liters of water (I was told to get 4 liters), but other days I would be so nauseated by drinking that I couldn't finish 1.
I borrowed a mat and resistance band from my mom and developed an exercise program for myself of all exercises that could be done laying down or otherwise supine, since changing from laying to sitting or standing made me feel the worse. I tried my best to follow my own program. After a few weeks, however, instead of feeling better, I was feeling worse.

I would be so lightheaded in the morning that I had to sit on the floor of the shower and while brushing my teeth. I had to get a special doctor's note requiring me to sit during morning shift report at work. I never passed out, but I would "grey out" if I tried to ignore my racing heart and the panic-y feeling of "you MUST sit down" that I would get. Actually, I had to sit a lot. Reaching my arms over my head would make me start to feel as if I might pass out as well. My bowel symptoms got so that I would have to excuse myself from shift report to go to the bathroom. I spent a significant number of days dealing with a migraine. My fingers and the bottoms of my feet would tingle and go numb. I was always too hot or too cold, never just right. Matt would let me sleep in any day I didn't have to get up for work (we were misinformed about that 18 month thing he was training for - it would end up taking 3 years before he would be able to work), and I would go to bed early, but still I was exhausted.

I began obsessively tracking my headache level, vital signs, and symptoms in the hopes that it would help my doctors figure out what was wrong. While my neurologist would look closely at my charts and take notes from them, all that would result would be a change in medication levels. She would comment on how well I seemed to be coping, kind of in disbelief of my charted headache levels. I thought maybe I should show up to appointments in my typical house-bound pajamas instead of my going-out dresses.

Finally, on our family trip to the beach last July, I decided this was it. I was chronically sick and not going to get better. I tried my best to participate in everything the family was doing, but walking from the hotel to the beach across the street was exhausting, I couldn't cope with the heat and had to stay under the umbrella, my heart raced and my head pounded. I spent more than a couple afternoons napping rather than going back to the beach. One night at dinner my headache got so bad that I began to panic and couldn't sit still in the restaurant, so excused myself and walked back to the hotel to cry in bed.

During that time at the beach, I began reading about using meditation and mindful awareness to deal with chronic pain and headaches. I ordered a book called How to be Sick - A Buddhist Inspired Guide for the Chronically Ill and their Caregivers. I found it quite helpful, and became more at peace at my resignation to just "be ill".

Then, in August, I went to my long-awaited appointment with the dysautonomia specialist. I came to my appointment armed with notes of symptoms and vital signs. I still have them. It's whiny and not fun. There's a lot of "nagging headache", "abdominal cramps", "nausea", "fluttery chest", "jittery", "anxious", "woozy", and "stabbing pain".

Here's how August 1st looked:
8am - Out of bed. BP while standing after coming downstairs = 88/66. Pulse 147.
Had to squat a few times while making breakfast.
12noon - Sleepy, whoozy, palpitations. BP 95/76, pulse = 124.
1230 - nausea while trying to drink water
1500 - jittery, anxious. BP 96/70, pulse = 122.
1630 - headache 6/10, moving around head
1700 - still have headache, now 8/10. BP 103/77, pulse = 124.
1930 - still have headache, 7/10. Motrin 800mg.
2200 - headache 4/10, going to bed.

He didn't care much about any of this. I was so surprised that the same guy who had told me whatever was wrong with me was "more serious than POTS", was now writing off everything I told him. He basically told me that the reason I wasn't getting better was that I wasn't doing what he told me. If I would just chug water and exercise I would be fine. I told him, "I used to climb the stairs 9 flights before working a night shift, then I could only do 3 flights before a night shift, then I could only do 3 flights and day shift, now I can only do day shift and no stairs.. my problem is I don't have enough energy to get through the day. How is exercise supposed to help?" At least, I told him that in my mind. In reality I had explained my decreased activity tolerance to the resident already, and by the time the attending expert guy came in, I was so tired that I just cried. I sat there and cried like an idiot and nodded my head while he told me to go to the gym at 5am before my 12 hour work shift.

At the front desk when they asked if I wanted to go ahead and schedule my next appointment, I told them I'd have to call them back about it. I went home, threw away the lab work slips they gave me, and through tears of rage I told Matt I wasn't doing the doctor and medication thing anymore. He was fully supportive of this, as he'd long suspected the medications to be contributing to, if not causing, my issues.

It wasn't a good idea, but I stopped taking everything cold turkey. Luckily I didn't really have any side-effects from this, aside from some major headaches in the first couple weeks. Cold turkey is not really a recommended way to end these kinds of medications. I had tried it before and only made it two days. This time I was armed with my rage towards towards the medical community and a tiny gold Buddha I set on my night-stand.
After a week, I started to feel less dizzy and fatigued. After a month, I even began to feel somewhat normal. Headaches continued to be a problem, but without all the other issues going on, they were more tolerable. For my birthday in September, Matt and I went on a 6 mile hike. It was a bit of a challenge, even for Matt, because of some of the steep elevation changes, but we did it! I did it!

In January, after a long wait, Matt left for eight weeks of job training out of state. I cut my work hours back to very part time. While he was away I decided to try working out again. I was able to do it, even upright moves like squats and lunges. I wasn't exhausted - in fact, like I read from regular people, I had more energy! Well, except I wasn't sleeping with Matt being away, so that made me tired, but I could still do the exercise.

After a month or so of exercising, I decided one night to check my pulse rate while laying in bed. It was 59! Excited, I stood up at the side of the bed and checked again a minute later - still 59!
I had done it. I had beat POTS.

Now, I'm three and a half years post-op. I don't know how many of the ups and downs of the last three years have been from medication vs surgery recovery vs other neurological issues. But either way, I'm finished with it. I'm not taking anymore medication. I'm trying to eat more healthy and exercise regularly. I'm sleeping regular hours. I am taking a break from working at all right now to enjoy being a full-time stay at home mom. At this point, I don't think I feel quite "normal", as in, how I would feel had this whole thing never happened, but I feel my own version of normal.

Headaches are less of a problem now, but are still present. I no longer have a constant headache, but do have some level of headache for some part of most days. I wake up with one everyday, but by breakfast it's typically improved. Usually my headaches are just in the background and at this point I don't think about them much, but once a week or so one will get bad enough that it bothers me, and maybe once every other week I'll get more of a migraine. I'll take an 800mg motrin or some tylenol if it's bad enough. If I'm really hurting and miserable, like to the point where I'm thinking about going to the ER, I'll take one of the percocet I have left over. Luckily I haven't had to do that much or recently.
My biggest headache trigger, aside from laying down, seems to be weather changes, but also sinus pressure, strong emotions (like crying or getting really angry), and I think sugar. I'm still not sure about the sugar one.

My left eye is stable. The first punctal plug I had in the lower tear duct fell out and was replaced, and then a couple months ago the replacement fell out. I haven't been back to Dr L recently, as I've been a bad patient, but I think I have enough awareness of how things are with that eye to know that it's okay. I hope so at least. Of course the gold weight and the tarrsorhaphy are still there. Dr L said I wouldn't need the gold weight changed out ever, unless it started to poke through the skin. I kind of wish I had a more low-profile platinum chain, but I didn't have time to research those things at the time that I needed it. I just hate how saggy the weight has already made my eyelid. I'll probably need a lift when I'm older or something. Who wants to contribute to my plastic surgery fund?
I still use Lacrilube (or Target brand, which is my favorite) ointment at night. This is needed to keep my eye from drying out at night, but it makes my eyelid skin kind of extra-well moisturized and sometimes my eye looks "gooey". I mainly notice this as a problem in the rare case that I'm trying to put on makeup. The eyeshadow won't stick to the left eye as much as the right.
In the morning I use Refresh Plus preservative free eye drops. They are slightly less viscous than the Celluvisc I used before, but they've been thick enough, and I was happy to move down a step. I usually only use the drops once in the morning. Occasionally I'll need one once in the afternoon but not usually.

Gold weight and tarrsorhaphy

My face is still about halfway paralyzed on the left. I have some movement below the cheekbone, but not much above. Just now I think I maybe moved my eyebrow a teeeeeeny bit. I have some hope that things will slowly improve but I know it will never be normal. I have synkinesis, which means that parts of my face that do move, don't always move in the way I think I am telling them to. For example, when I try to smile some other muscle pulls and I get a weird dimple in my chin. I would love to get botox again, but it's not really worth going in every three months just to avoid some weird face movements.
My face is still probably my #1 most upsetting thing. At this point a large number of the people I know have never met my "real face". I know it shouldn't and really doesn't matter, but it bothers me a lot.

My facial issues still effect the way I eat and drink to a certain extent, but my compensations are more automatic now. Usually I don't think about it. I don't always use a straw anymore to drink, but I do kind of position cups more on the right side of my mouth. Things like soda cans and narrow bottles are more difficult and I can only take individual sips out of these instead of a regular series of gulps. Whatever I'm drinking will sometimes dribble down my face but the kids seem to notice that more than I do. I try to always have a napkin because I will always make a mess on my face while eating. I guess it's since my lips won't completely move out of the way. I also use the napkin or my hand to kind of cover my mouth while I'm chewing, mostly when out in public, because I know my mouth doesn't always close all the way while I chew and no one wants to see that. In general I still prefer not to eat in front of other (non-family) people, but I don't let it affect my plans or anything.

Here's the "poses" with glasses on and glasses off. Face-face, smile, eyes closed (which results in a frowny face, apparently), and pucker face. I wish masks were somehow in fashion.

I still sleep primarily on my right side. Most nights I wake up at some point with a sore right hip. I try to position all waistbands so they won't be on my right hipbone and make those uncomfortable red lines. If I sleep on my left side, it will only be for a couple hours and I'll usually wake up with more pain I guess where the titanium mesh is.

Of course being deaf on the left hasn't changed. I'm not shy about it (or about any of this, clearly..) and tell most people about it almost right away. I never want someone to think I'm ignoring them, which does happen when people are standing on my left side talking to me and I'm staring off into space, not hearing them. I have the hardest time with background noises. If there is any level of background noise, it makes it really hard for me to hear, or at least make the words out, in conversations. When I'm in a group I probably stare too much at people's faces when they talk, as looking at their lips does help me puzzle things out usually. I want to learn sign language, but have been too lazy to actually try to learn. I just want to know it somehow.

My left ear still has a constant white noise in it. The tinnitus doesn't bother as me as much, luckily. Most days I don't think about it. As soon as I do start to think about it, it gets louder. Sometimes the right ear will ring, but only for about 5-30 seconds, and it's more of a typical ringing tone. That worries me sometimes but it doesn't happen that often and always goes away.

I still get "fuzzy brained" at times. Sometimes I think it's from not hearing what's going. Sometimes things just get kind of loopy and confusing. This usually happens during times of stress, headache, or lack of sleep. For example, in the week after we moved I found it kind of hard to get around Target. Target, of all places! It seemed like the aisles were getting narrower and I couldn't sense the dimensions of my cart and the edges of everything were hazy. It's hard to describe exactly. I hate to use this analogy, because I really don't drink that often at all, but it's the best I can think of - it's kind of like having had a little too much alcohol, but trying to pull off like everything's just fine when really things just aren't quite right. I don't like when I get fuzzy brained because I'm afraid I'm going to bump into someone or loose a child or something.

My memory still sucks. I write a lot of lists.

My balance isn't great. I modify my exercises to avoid anything that involves standing on one foot, because I simply can't balance like that while performing any kind of movement. I can hardly balance like that without moving. Most people with vestibular issues have trouble in the dark because vision is used so much to process up from down, left from right, etc. Despite all that wonderful work I did in PT three years ago, I am no exception. In the dark I feel like a drunk (here's that analogy again) - I have a vague idea of where the floor and walls and furniture should be, but they just keep swirling around and making me wobble. We keep a nightlight in the bathroom and I walk with my hands out in front of me. I have plenty of random bruises on my legs, but I have never fallen.

Since I'm not being followed by any doctors currently, I didn't have my yearly MRI last October. I was, however, in a minor car accident where I ended up getting a head and neck CT, which was clear. I know they weren't really looking for tumors in that case, but I'm fine with it anyway. Besides, if something is wrong I don't really want to know about it right now. Too many things are going well that I'm probably about due for some sort of issue, and I just don't want to deal with it.
Let's claim it now - it's going to be a good year!