Blissful Brain

Vision Problems

When I had my stroke, the after effect that lingered the longest was double vision. It lasted for about four months. I remember being driven to an outpatient appointment, and seeing two roads in front of me, and wondering if I’d ever drive again.

While I was in the hospital, still intubated, about five days after the stroke, the resident asked me to follow his light with my eyes. I couldn’t do it. I saw concern on his face.

What complicated this exact moment was that I didn’t have my glasses on. I’m blind as a bat to being with. I’ve been wearing corrective lenses since the second grade. I couldn’t exactly tell how bad my vision was until a family member found my glasses and brought them to me. I had my contacts in when the stroke occurred. As soon as I was awake, I realized no one noticed I was still wearing them and bothered to take them out. They stuck to my eyes like glue. I managed to remove them and no one understood what I was doing until I had them out.

Once I had my glasses, I realized how bad the issue with my vision was. Everything was double. I had a few compassionate people console me, saying it was likely temporary, but, it was frustrating that I couldn’t see or focus on a damn thing. I couldn’t text, I couldn’t email. I couldn’t scroll the internet while I was bored as hell, in the hospital and away from my family.

After a few weeks, I had a nurse that had not been assigned to me before. She suggested that I patch my eye, and rotate the patch from one eye to the other every two hours. She told me she had a patient with a similar issue and this helped her other patient.

I started doing this. At first, I used some gauze, but that kept falling off. Then, I used an actual patch, but that was really difficult with my glasses over top of it. Then, I found a patch on ETSY that actually fit over glasses. Once I bought a few of those, I was compliant with rotating the patch every two hours. Slowly, my vision started to come back.

My stroke was in April of 2017. At the end of July 2017, I had another surgery to put a stent at the base of my aneurysm. The aneurysm had a “wide neck” and they couldn’t fit coils in the neck. Therefore, there was a risk of it re-bleeding. The stent diverts blood away from the neck, and at my last angiogram, the aneurysm was completely devoid of blood.

I had to stay overnight after this stent procedure. In the morning, the resident rounded on me, and he asked me to follow the light with my eyes. I didn’t realize it at the time, but he was the same one who initially asked me to do this when I woke up, still intubated. I was able to follow his command this time, though with some difficulty.

He said, “Are your eyes focusing better? They aren’t twerking like they were the last time.”

I shit you not, he said my eyes were twerking. I’ll never forget that. I imagined eyes standing in front of a stripper pole, shaking it and dancing.

I told him it was better, but not completely gone. I continued to patch and I had an appointment with a neuro-ophthalmologist in August of that year. I was told this MD might find a solution to my double vision, and it might include a prism lens on my glasses.

About two weeks before my appointment, my eyes seemed to magically heal, and I could see again. I kept the appointment with the neuro-ophthalmologist out of an abundance of caution. He gave me a quick exam, said I likely had some type of cranial nerve palsy from the stroke, and that, in time, it corrected itself.

About two months ago, I had my annual eye exam for new glasses and contacts. I told the doc I was having trouble seeing my computer at work. I’m almost 43 now, so I’ve had shitty vision for a long time. I was ordered bifocal eyeglasses, and was told to wear OTC reading glasses when I had my contacts in.

I’ve been doing this for a few months now. It’s not been going well. I usually get a headache in the middle of my work day. When I wear my glasses, I can’t see my smaller monitor very well. I’ve tried moving it forward and back. I’ve tried looking at the monitor with the bifocal part and with the non-bifocal part. I’ve tried wearing my contacts and the readers. This last option seems to be the best, but I get a raging headache by the middle of the day if I do this all day long. About two hours after my work day is over, the headache resolves, so I know this is all related to my vision.

I’m starting to consider a consult for LASIK. I was told when I was younger this likely wouldn’t be an option for me because my vision keeps getting worse every year, and they like to do LASIK on patients whose vision has stabilized and isn’t worsening. But, who knows if that logic has changed.

I’m so frustrated with not being able to see, or being able to see but developing a headache. This is triggering my anxiety because of the feelings and emotions I went through just after the stroke, when I had to walk around with an eye patch for four months.

The other issue with LASIK, aside from the cost, is stringing together enough days off to recuperate. This might be something I have to plan a year in advance given how shitty my schedule is at work.

I keep looking for something new, but it’s really slim pickings in my field. I feel like my profession is dying, but that’s a topic for a different day.

Today, I’m alternating between wearing my contacts and readers and just my contacts. That seems to be the best option. If I take the readers off every hour, I don’t get the raging headache, but I can’t see as well.

I wish I knew if this is just my eyes getting older, if it’s a residual effect from my stroke, or if I have a new aneurysm. The anxiety never really stops.

It shouldn’t be this difficult

I’m due for an MRA of the brain this year. This is a type of MRI that looks into the blood vessels. They can visualize my aneurysm and check for new ones.

Last year, I was told by the nurse practitioner (NP) at my neurosurgeon’s office, that the order for the MRA was in place. They want me to have this test in July.

It takes an act of congress to get a day off in the summer at my current workplace. Now that our schedule is being made by an app and not a human, we no longer have the ability to request a specific shift. Meaning, getting a day off in July, or an early shift in July on a specific date is all but impossible.

I tried to email my NP yesterday to ask if I could schedule the MRA in June because I know I have a week off mid-June. But, I found the NP no longer works there.

I tried emailing a different NP that I’ve seen before. I received a response back from someone else who said THAT NP no longer works there. She advised me to call the cerebrovascular center to establish care with someone else.

I called them this morning and was stunned to find out that my neurosurgeon left as well. This is the world class Cleveland Clinic. They can’t be bothered to send a letter, an automated call, an email to let patients know their entire medical team quit? The people who prescribe their life sustaining medications are all gone. So, too bad? They can’t be organized enough to see that a patient has necessary follow up because of a life changing illness, and, I don’t know, FOLLOW UP with the patient?

I guess that’s too much to ask.

I spoke to a nice woman today at the cerebrovascular center. She took my name and number, said she’d email the new director and have his nurse get a hold of me. I wasn’t going to hold my breath. But, this nice woman did what she said. And the nurse called me. She quelled my anxiety about needing to schedule the MRA in June. She said that could probably be arranged. She promised to have the NP sign the order for the MRA and have the radiology department call me to schedule it. That last part hasn’t happened yet, but I’m hopeful that the stars will align and I can get this done.

Before this all happened, I realized I’d have to reschedule my next round of Botox because of the shit with the schedule at work. My Botox typically wears off about 10-14 days before my next round of shots. The shots always initially worsen my headaches for 1-2 weeks after I get them. Because of the schedule at work, I had to move my next round of Botox to 10 days later than my original appointment So I’ll likely be in agony for 3-4 weeks.

While I was dealing with all of this bullshit, I started looking at going on intermittent FMLA so work would be required to give me time off for these medical appointments. But, the harsh language surrounding the policy has turned me off of it. They can audit you at anytime. If there hasn’t been enough of an attempt to schedule these appointments in my time off work, they can fire me. If they find that my ability to do my job is affected by my medical appointments, they can demote me.

Why is this so fucking difficult? Why doesn’t anyone else care about my well being? The world class Cleveland Clinic would not have cared if I had been lost to follow up. My job sure as shit does not care if I have a headache every day, as long as I show up. They can’t be bothered to give me a day off in July because “the needs of the business” come before my brain. What if there’s another aneurysm in there? Do I have to work through that, too?

I’m still looking for a new job. I applied to one last week and did not get an interview. My coworker just quit. She’s been super supportive, telling me she was rejected by 20 places before she got this offer. Telling me not to give up. It gives me a little bit of hope.

But, things just should not be this hard. It shouldn’t be this hard to get necessary and potentially life saving medical care.

Fingers crossed that I get to spend my June vacation at the doctor’s instead of on a beach. That’s what life has come to, I guess.

A letter to myself at age 23

Dear me,

Congratulations on your doctorate and finishing your residency! You worked so hard, and you’ve accomplished so much. You’ve come such a long way.

I know you’ve been told by many people that “the world is your oyster.” I know you’re tired of studying and you just want to work now and make money. But, I’m here at age 42 to tell you, this is the wrong approach.

You’re going to regret not getting those extra certifications. The job market is going to get more competitive as you get older. You’re going to find it difficult to move on from one place that is incredibly toxic.

I know you think you’re tired now, but I want you to know, you don’t know a damn thing about being tired. There is tired because you were out late, and then there is tired because you have four kids and a brain injury.

Oh, I forgot to mention the brain injury. That’s part of the brain fog, which is because of the brain injury.

See, I wish I could tell you how to stop it from happening, but I think it’ll happen regardless. There is something big and deadly growing in your brain. Maybe it’s not there yet. Well, I actually know it isn’t. Because that MRI you have in about seven years shows it wasn’t there.

I don’t know when it starts to grow, but I have a guess. But, that’s all it is. It’s just a guess. There’s nothing you can do.

But, I digress.

This job you land, it was great in the beginning. But, see, you got complacent with your career. You stopped doing presentations at national conferences. You stopped publishing. You thought it was ok to slow down and start a family.

But, you didn’t see this bomb in your brain coming. You didn’t know you’d almost die at age 37.

When you woke up in the ICU, you thought you won the lottery. You survived! A doctor with insane skills was close by. He and his team saved you. He looked back at that MRI, and he didn’t see the horrific aneurysm. No one knew it was there. Not until it was too late.

Now, you’re working all of the time, stuck in a job that you hate, because you need the money and the medical benefits. You’re stuck there because you thought you’d done enough.

You need to keep going. You need to keep studying. It’ll be too difficult for you to study once that aneurysm blows. It’ll cost you precious energy. It’ll give you headaches. It’ll be so difficult for you to keep up with your coworkers.

You won’t be disabled “enough” to qualify for disability. So, you have to keep working. Those kids you wanted, and tried so long and so hard to have, will need you to keep working.

I don’t know how much more time you have left, but I know how tired you are and how difficult your life is.

Do everything you can to set yourself up for your future success. Keep studying the industry. Keep presenting. Keep publishing. Keep your resume top notch.

You’re stuck in a rut and you can’t get out.

But, also, have as much fun as you can. Travel as much as you can. Go to more concerts. You won’t be able to once this thing in your head pops. The noise and chaos will overwhelm you. It takes you days, sometimes weeks, to recover from major events.

No one understands. You look fine. You’re not. Not at all. Every day is a struggle.

We are all just one breath away from everything being different. You are no exception.

A good day, for once

After feeling really shitty for days on end, I woke up today and felt ok. No headache, no exhaustion. What’s that feeling? Hunger? Wow, where have you been? Let’s eat!

What brain fog? I’m thinking clearly for once!

I wish I could explain it. I didn’t do anything differently. I didn’t sleep longer than usual. I didn’t take any different medications. I didn’t overdo the caffeine.

I wish I could bottle this and save it for a crappy day, which will be inevitable next week when I work 7 days in a row.

I wish this would last.

I’m not going to push myself into trying to get a million things done while I’m feeling up to it. I know that’ll just make me crash and burn.

I have to “save my spoons.”

For those that don’t know, a “spoonie” is a term for a person living with a chronic illness, such as myself. I have a brain injury.

The Spoon Theory:

A handful of spoons represents your daily energy reserves. Every activity, even mundane, depletes your spoons. Think of things like showering, getting groceries, etc. When you run out of spoons, you can’t manage simple tasks like emptying the dishwasher. When your spoons are depleted, the exhaustion takes over and forces you to rest.

Also, because I have a brain injury, I start the day with fewer spoons than a healthy person. I’m already at a disadvantage.

Today, I feel like I have enough spoons. I haven’t had enough spoons in quite some time.

So, I’m going to ride this little wave of wellness for as long as it will last.

Here’s hoping my spoons last a few days. 🥄

“Both” kind of day

March is brain injury awareness month. But, I’m aware of it every day of the year.

I’ve been battling neuro fatigue more than usual the last two weeks. I wish I understood why. I wish there was some treatment for it. Why doesn’t sleeping 8-9 hours a night just make me feel better? I don’t know, but it doesn’t. Despite the awesome sleep scores my FitBit gives me, I’m fucking exhausted from the moment I get up until the moment I tumble into bed.

Coffee doesn’t help, sleep doesn’t help, and meditating doesn’t help. I don’t know what else there is to combat this phenomenon.

I can deal with the headaches. I have an arsenal of drug and non-drug therapies for my headaches. But there is nothing that helps the fatigue.

It’s not just being tired. My thoughts and actions are slow. My brain fog is intensified. My word finding difficulties are amplified. Everything is just worse when I feel this way.

I feel inadequate at work and at home. I’d rather just go lie down than spend time with my family. But, with four little kids, I just don’t have this luxury.

It’s rare that I feel healthy and well. I either have a headache, severe fatigue, or both. Today is a “both” kind of day. I can’t wait until the kids are in bed and I can just sleep.

I have to work early tomorrow. So, that won’t help, either.

I’m trying to stay optimistic. I’m trying to count my blessings. But, I’m also reminding myself that I don’t always have to be grateful every second of the day. While I am grateful it isn’t worse, I’m allowing myself to be angry and sad that I feel like shit for most of my existence.

I’m going to treat myself to some real food and hope that helps. I’m tired of having zero interest in food. I’m going to force myself to eat.

Here’s hoping for some relief from this misery.

Approaching Five Years

It’s been almost five years since my ruptured brain aneurysm. The anniversary date is fast approaching.

There’s that saying that goes, “if you don’t make time for your wellness, you will be forced to make time for your illness.” This was true of me five years ago.

My triplets were babies. My frail son was constantly in and out of the hospital. He was oxygen dependent, steroid dependent, fed via a feeding tube, constantly vomiting, and home bound to avoid infections. Home bound except for the plethora of doctors appointments, and new diagnoses that I never saw coming. Bilateral cataracts? In a baby? What the fuck?

He had in home speech therapy, occupational therapy and physical therapy, along with nursing visits to monitor his weight and his growth. While taking care of him, I had two other babies and a slightly older son. Four babies in diapers at one time. What the fuck?

I was also working part time. I hadn’t yet lost the baby weight. I was getting just short bursts of sleep every night for the better part of a year.

I can’t tell you how many times I’ve been asked, “how did you survive that?” And my answer is always the same: “I very nearly didn’t. I don’t know how or why I did.”

The aneurysm ruptured after taking my son to get X-rays. And then I was the patient for a good 4-5 months. Even then, I went back to work more quickly than I should have. As soon as my double vision resolved, I was back at work.

I should have taken more time. I should have focused more energy on myself. I should have prioritized self care. I should have slept as much as I could. I should have taken better care of myself.

Now, I suffer from frequent headaches, fatigue, depression, insomnia, and PTSD.

Most days, I have no appetite. I’m down to almost 100 pounds. It’s like the appetite center of my brain broke when I had the stroke. You can joke that you’d like to have this problem, but I assure you, you wouldn’t like it.

When I had my stroke, I was close to 160, which also wasn’t ideal as I’m only 5’2. But, I had very recently had four babies in a short amount of time.

I long for the day when I find joy and ease again; when I find my appetite again; when my kids are a little more functional and independent.

For now, I’m holding on by the thinnest of threads. Sleep is my favorite part of the day, especially when it comes without a struggle.

I think it always will be my favorite part of the day.

Time to get unstuck

Well, wish me luck, blogosphere. It’s come time for me to stop being stuck. I’m polishing up my resume and I’m determined to find something new.

My review at my current job is in a couple days. I’ve heard raises have been abysmal, as usual. The company posts profits of billions of dollars per quarter, but they can’t pass that on to their workers.

The thing that is pushing me this time, though, is the schedule. I’ve been working under a completely incompetent manager who can’t make the schedule accurately. She was hired for the purpose of making the schedule for our department. The department is staffed by about 50 people, and requires staffing 24-7-365. We work nights, weekends, and holidays. It’s healthcare. No one working in healthcare expects anything differently.

But, she sucks at her job. Her superiors admitted she was making too many mistakes. This is something the peons like myself have been pointing out for years. I guess they finally decided to listen.

But, instead of firing this person, and hiring someone who is competent, they are buying software which will make the schedule for her. We can no longer make schedule requests. We are at the mercy of the software.

This isn’t going to work for me. My kids have a ton of appointments. I have regular appointments for Botox (headaches). My choices here are to either hope I get the right shift every time I need it (won’t happen), take a vacation day every time I have an appointment (won’t happen because getting a Monday or a Friday off is impossible), or try to find something better.

I’m going to look around, this time with more vigor. Slurred speech and word finding difficulties be damned. I have to try. It’s time to try.

Wish me luck. I will need it.

Not so blissful

I’m struggling with anxiety and self-worth, again. I feel a tremendous amount of pressure to provide for my family. I’m worried about screwing up at work because of my brain injury. I suppose it’s an intrusive thought. I’ve managed to work for almost five years since my aneurysm rupture, and no one has made any serious inquiries about my abilities to perform my job.

It’s stressful to have to worry about the kids, the finances, and everyone’s medical issues. I’m tired. I’m just so tired.

I keep trying my best, but I’d love to get out of this industry. I wish we had the financial stability for this to even be an option. But, we don’t, so it isn’t. I’m rotting away at my desk, trying my best to just do my job and fly under the radar. I don’t know if I am, as our annual reviews aren’t for another few weeks.

The increased anxiety might be due to the upcoming review. Our raises were shit last year. They’ll be shit again this year, despite our company pulling in billions every quarter. They can’t even bother giving us the typical inflation raise.

The worst of it is, though, the market is saturated with people who have my degree. Only the shittiest of the shitty are hiring with competitive wages. So, I have to stay. I have to swallow my pride and take my pathetic raise. I have to try to remember that I am doing my best, but, that’s really hard.

I have debated trying to get some new certifications. But, every time I try to study, I get super fatigued and the headaches come roaring back. I’ve tried this several times now, and it always ends the same way. I give up because I just don’t have the mental bandwidth to do it.

I have this overwhelming sense of doom and I don’t really know why. I’m just waiting for it to all fall apart. Anxiety, is that you?

I had to dip into my savings to pay for the repairs to the dilapidated dining room. I curse the builder of this home who cut corners and fucked it all up. Now, I’m trying my best to dig us out of this hole from the repairs.

The anxiety is overwhelming at times. I vented to a friend of mine last week, and she took hours to respond. She eventually said she had been thinking of what to say back to me and couldn’t think of anything. That just made me feel worse, in a way.

I don’t know what I’m doing most of the time. I rarely see the kids because I’m always working. I haven’t seen my family since the kids started school. I wanted to protect my parents from COVID, so I didn’t want to visit them in case one of the kids brought it home.

I have to work this weekend, and then the kids and I are off next Monday. I have plans for my parents to come over. It will be good to see them.

The problem will be the neuro-fatigue. The kids will inevitably be chaotic, trying their best to outdo each other to gain my parents’ attention. I will be coming off of a 7 day stretch of working. I will already be tired and worn thin.

Everything is just so impossible.

Parenting and bullying

As a mom of four, I always anticipated I’d have to deal with a bullying situation. I did not expect it to begin in preschool, however.

My triplets are completing a third year of preschool. We opted to do a third year due to the pandemic, and to allow one of them to catch up to the other two.

They ride the bus to and from afternoon preschool.

Last week, my son Isaac told me a boy named Carl* (all names have been changed) was “poking him.” I asked Isaac if he asked Carl to stop, and he said he didn’t. I encouraged my son to stand up for himself, to tell the kid to stop, and if he didn’t, to tell the bus driver.

Fast forward to Monday of the following week. I asked Isaac if the kid poked him. He nonchalantly replied “No. But he did say he was going to stab me with a knife.”

After several attempts at getting a cohesive narrative out of my five year old, we came to the conclusion that he was telling the truth. He had multiple chances to own up to making the story up, and he kept insisting this is what Carl said to him. We explicitly told him what he was saying was serious, and we would not be mad at him if he was making it up, but we needed to know if what he was saying was true. He stated that it was. My other kids did not hear this exchange and could not corroborate the story.

I’ve never been in this situation before. I didn’t know what to do, but ultimately decided to email the school’s principal. I sent her the following email on Monday night at 7:30 PM.

********************************************

Hello Ms. Deer,

I am sorry to bother you. I am not sure who to direct this to.

My triplets attend afternoon pre-k. On the way home, they ride bus 10, driven by Ms. Smith.

Last week, my son, Isaac, reported to me that another child on the bus, named Carl, keeps poking him. It seemed to bother Isaac. I advised him to politely ask Carl to stop touching him the next time it happened and to tell the bus driver.

I asked Isaac today if Carl poked him, and Isaac said that on Monday afternoon, Carl told Isaac to put his hand somewhere specific, then he kicked Isaac’s hand. At some point, according to Isaac, Carl told Isaac, “I’m going to stab you with a knife.”

My husband and I have both told Isaac this is very serious and if he’s joking he should tell us and we wouldn’t be mad at him. He continued to tell us that Carl made this threat about the knife. Isaac did not inform the bus driver.

We have been told by the kids that Carl might be an older kid who was asked by Ms. Smith to ensure the triplets behave on the bus.

I am not sure what to believe, but I wanted to report it to someone given the serious nature of the allegations, and due to concern for Carl’s home situation.

I know our kids can get rowdy on the bus, but I’m wondering if we can separate Isaac and Carl. I’m not sure the validity of the statement that Carl is the babysitter for the triplets. But, hopefully an aide can be involved, if possible.

We were wondering if there is a camera on the bus and if that footage could be reviewed for anything nefarious between the kids.

Thank you for your attention to this matter.

*******************************************

Within about 10 minutes, I received a reply from Ms. Deer. She stated she called the transportation department, would investigate the situation in the morning, and would call me in the afternoon. I was impressed by her prompt reply off hours and was glad I wasn’t overreacting.

She called me Tuesday afternoon. She stated she talked to Carl, his parents, his teacher, and the bus driver. She reported that Isaac and Carl would be separated. She requested that if I hear about anything else to let her know, and it was not a bother at all.

My son didn’t seem scared or fazed at all. In fact, I don’t think he would have told us about it if i hadn’t asked if Carl poked him.

It’s a good lesson for me that these tiny humans don’t understand the world and might not always be forthcoming about what happens in their day. I’m going to make a point to ask more questions about school. Hopefully, I get some actual responses instead of goofiness, which is their typical way of talking.

I’m sad that we have to deal with threats of violence at such a young age. What the hell is this world coming to?

Botox Day

Every 3 months, I get a series of Botox shots on my face, head, neck, and shoulders to help with the chronic headaches related to my ruptured brain aneurysm. They help. But, for the first 2 weeks, they make the pain worse.

I had to use my abortive medication this morning before my appointment. I’m lucky this medication works so well for me and gives me minimal side effects.

My blood pressure was high during the appointment. My anxiety has been pretty severe the last month or so. I have a feeling my blood pressure might be high as a result of the anxiety.

Of course, the high blood pressure is only making my anxiety worse. 🤦🏻‍♀️🤦🏻‍♀️🤦🏻‍♀️🤦🏻‍♀️

I wonder what it feels like to be free of anxiety. The closest I get is to be asleep.

Right now, my neck is stiff from the shots. I can tell I’m going to have a lot of pain. He made me sit up for the neck and shoulder shots. It’s more difficult to relax my muscles while I’m upright. I have found being as relaxed as possible makes the two week hell less hellish. Given how anxious I was, the fact I was upright, and the fact it’s been two hours since my shots and I’m already sore, I know I’m in trouble.

Maybe I’ll get lucky.