Setting the Record(s) Straight

CW: medical trauma, talk of mental health issues including suicide and such. Proceed with caution.

The rumors about my surgeries and mental maladies have been greatly exaggerated. So I thought I should clear the air.

I have never had any kind of implant. Unless aliens abducted me without my awareness, which is another distinct possibility the stranger my medical problems get.

But I jest. And digress.

My favorite X-Ray mistake to come out of this whole mess. I look like the Terminator Librarian.

In “The X-Files,” and other sci-fi shows, the aliens give you very different implants than the ones my doctors thought I had. They do not enhance the bosom (though I suspect there is probably an adult film or probably several on this subject that I am ignorant of).

I had an X-ray to determine what type and degree of scoliosis I had. There were some incidental findings. Namely, a cyst-like structure in the pelvis, and a calcified left breast implant.

See italicized statement above. My mammogram three weeks prior showed no abnormalities. I messaged my doctor saying well, I’m pretty sure that’s my spine, but I don’t have implants.

Before he saw the message, he kindly offered me a referral to a breast specialist. You know, to take care of that left implant I don’t have. And hopefully solve all that ailed me.

He then saw the message and clarified with the radiologist that the calcified mass is in my spleen. Likely from an injury I don’t remember having.

Like I said. Aliens.

I had to write a letter to social security explaining the misinterpretation by the radiologist. So now the government knows ALL of my secrets.

I corrected the record after the very nice rheumatologist saw me. He was ALSO hoping that the issue was the implant I didn’t have. I had to send a form in to set the record straight with my primary health care system, and then I realized it was wrong in TWO places.

So I sent in another form.

I also submitted another correction. I went to look on MyChart at prior visits. I hoped my former physician documented when I first complained of severe pain in the spleen area. Instead, I found an alarming reason for our first visit that was probably a clerical error, because no discussion of depression or a safety plan was included in the notes. It’s even says that my affect was normal and I am “pleasant.” Which is very odd considering they wrote “suicidal ideation” in the “reason for visit” section.

I was there to establish for troubling, complex medical issues. Including debilitating light sensitivity. This primary was nicer than the last one about telling me that she thought my issues were mental. But she persisted in doing so anyway.

So I get warned by ophthalmologists and legally blind folks that going on psychiatric meds with severe dry eye could result in total, legal blindness. But my primary doctors all want me to go back on psychiatric medication.

I somehow don’t think that going completely blind will make me less anxious. But what do I know?

I’ve printed out the email from my medication manager stating that our options are quite limited because of the physical issue of dry eye syndrome. In case anyone tries to bring this up again.

Speaking of my mental illnesses, I have only been hospitalized once for those. There were extremely stressful mitigating circumstances surrounding the hospitalization, for sure. But I would have been able to stay out of the hospital had I not been under-diagnosed and given the wrong medication for what hadn’t yet been diagnosed.

Antidepressants and anti-anxiety medications can work well for some people who have anxiety disorders. Throw a mood disorder in the mix, however, and it’s an entirely different ballgame.

The medication provider at the time eventually started clueing in that a mood disorder might be present in addition to the obsessive compulsive disorder. He even tried prescribing a mood stabilizer right before I went into the hospital.

But lucky, lucky me. I had an allergic reaction to that medication. In the ER, I was given an extremely painful shot in my stomach in the hopes of warding off anaphylaxis. They then prescribed prednisone to stay on the safe side.

My new favorite button that I’m hoping my allergist will laugh at. Found at Hot Topic.

But steroids apparently exacerbated my insomnia and anxiety. Into the hospital I went. I stayed on my psychiatric medications despite horrible and unusual side effects for years, so I would never have to be hospitalized again.

So one hospitalization for mental health, I’ve learned, is not nearly enough for you to be considered permanently disabled, no matter what diagnoses you have. But apparently those diagnoses are reason enough for primary providers to invalidate everything you say for the rest of your life. Despite piles of documented physical issues.

At my last visit I stated what I thought I needed to be evaluated for. I also said the ENT wanted to eliminate the possibility of mold allergies before treating me with antibiotics for 4-6 weeks. If the chronic sinusitis doesn’t resolve he may need to do surgery.

I was then asked if it was my anxiety that was making me dizzy.

No. Pretty sure that’s not part of the criteria listed in the DSM-5 for my mental disorders. I have been chasing my own tail and jumping through fiery hoops of red tape despite vestibular issues. Maybe that’s causing some of it…

My eyes hurt like hell at the moment but I am determined to set the record straight, and write my truth.

Because truth is stranger than fiction, and the truth is out there.

Way out there.

Call me Itis

Because something is always inflamed.

There is no God or Goddess named Itis that I know of. There is Iris, which aside from being an excellent GooGoo Dolls song, is a freaking awesome name. It seems in mythology she was a mail carrier for the Gods. There is also the Egyptian Goddess Isis, who I read has healing powers.

But on bad days. I can’t heal myself. In a crash, I can’t seem to resurrect myself from my bed.

Here is a list of some of the types of inflammation that have plagued me over the years. Bursitis, dermatitis, arthritis, tendinitis, costochronditis, sinusitis, keratitis, uveitis. That’s probably not all of them. I don’t know yet what’s causing the neuropathy in my hands and feet, but it wouldn’t surprise me at all if it was another type of inflammation.

Inflammation may also be part of why my eyes are so dry. They call that one sicca. It may not always make me feel sicca, but it can be difficult to manage. I also have a lovely ganglion cyst on my non-dominant hand and a cyst in an ankle. They think those are a result of inflammation, too.

The only place they can’t seem to find inflammation is where my former ophthalmologist suspected it: in my blood. He said “lupus” on three separate visits. Whatever this is looks like lupus, but isn’t lupus.

If I ever start performing again, I will name my band Looks Like Lupus.

After my cardiac stress test came out normal, I asked the cardiologist why I’m like this. He told me that post-viral inflammation can last for years. Shingles had me in bed, staring at the wall, nearly nonfunctional for at least a week. Then swelling started in my feet, along with episodes of extreme fatigue.

Even when I returned to work probably too soon after the shingles, I was falling asleep at my desk. If I didn’t show up, I didn’t get paid. I was unaware there could be long term consequences.

Uveitis that was apparently the only symptom of a virus set in summer of last year. Once it resolved, I started getting really dizzy with generalized headaches much of the time. I’ve had conversations with long-haul Covid patients, who have symptoms quite similar to mine. I now suspect the uveitis may have an otherwise asymptomatic Covid-19 infection.

The lady who came to evaluate me from low vision vocational rehabilitation said she thought I might have chronic fatigue syndrome. I read what I could about it online, and I checked a lot of the boxes as far as symptoms go. If I don’t meet the criteria for an autoimmune diagnosis, I feel I definitely meet the criteria for ME/CFS.

I’ve been trying to get into podcasting since, as evidenced by my lack of consistent posting here, I can’t always see well to read and write on a computer. My phone, with the brightness all the way turned down, is usually alright to look at. On the bad days, it does make me quite dizzy. But it’s the smallest screen I own.

The iPad I have less luck with. Fewer apps even offer dark mode and the screen is a bit too close and too big. Anthing with videos or large pictures is a no-no. TV screens are ok, if the brightness is adjusted to reflect the day’s level of light sensitivity. So I can watch TV and movies, but I’m having a heck of a time writing reviews of them.

The only thing that helps is really pacing or limiting myself. I’m used to knocking out tasks or blog entries all at once. Now I have to do them for small amounts of time. It can be very frustrating to completely adjust your way of doing things. But anything is preferable to crashing so hard you get that thought in your head—“Oh, so this is how it ends?”

I’ve also given up alcohol except for on special occasions. I’m trying to eliminate as much gluten and preservative-laden food as I can from my diet.

I have seen some improvement since I started implementing lifestyle changes for POTS (post orthostatic tachycardia syndrome). My dizziness starts not long after I’m upright. POTS is a type of dysautonomia, which can be a part of post-viral illness. I was told the closest place I can be evaluated for dysautonomia is the University of Utah. But even though four specialists have suggested I go there, I don’t have insurance coverage there.

I keep asking the dry eye specialist if it’s normal for my eyes to burn if I’m exposed to too much light. He assures me that it is. I wish he had a different answer for me. I’ll keep asking, because hope springs eternal.

So if you need me, I’ll be stuck (mostly) inside my house, fanning the flames of whatever inflammation vexes me on any given day.

No Worries? No. Worries.

CW: medical issues, some maybe more graphic than you’d prefer. Medical gaslighting and trauma.

My thumbs have been numb and I’ve been in the midst of making even more appointments for me and my son. I am not listing this time as a gap on my resume if I am ever diagnosed and treated and I can go back to work. I’m listing myself as a “freelance healthcare advocate.” I mean it’s a volunteer position technically. But very rewarding on very few occasions.

Instead of grabbing documentation to justify a very much needed referral, I was trying to distract myself by writing. I had to stop being on Twitter for a bit because I’ve reached peak frustration with the state of my state’s medical system. The main issue is I get a million recommendations and treatments for my symptoms, without receiving a diagnosis for what might be causing the more debilitating and unusual ones.

Vestibular therapist suggested a low histamine diet. Dry eye guy suggested a Whole Foods diet. Primary said cut out dairy and then cut out gluten. If that didn’t work try the FODMAP diet.

Are you all aware that food is expensive? Especially when you have income limitations because (though you are disabled), you are not receiving disability benefits? My kiddo only eats specific foods so I end up purchasing a lot of separate items as it is. I have been trying to figure out how to work very specific and often very expensive diets into my so-called budget.

And I’m trying to do this as much as I can without asking for money. The pandemic has been so merciless with so many folks. And I’m stubborn. I really do want to get better so I can go back to work. A job would be way less stressful than constantly trying to stay on top of symptoms, appointments, and paperwork.

Having a limited income also means though specialists really want me to go to University of Utah, I can’t realistically. I have very little insurance coverage there. I am having a lot of neurological issues and everything is a struggle. Even finding the right lighting conditions to file away medical paperwork on decent days is a challenge.

I’ve looked for health advocates for complex cases in Idaho. The only ones I have found are through my insurance company. I need to call the secondary insurance to see if I have any options at all.

But without being able to track what I’m supposed to do on a computer, things get put off or missed. I’m trying to get better so I can be a better advocate for my son, and I’m good at staying on top of his stuff. Just not my own.

So many people this week have suggested I make so many phone calls. I played “Who’s on First” with my primary physician’s office this week. An urgent care doc here said my lack of referrals was due to too few providers in the area and too many new patients. Reasonable, we have had a population boom. What wasn’t reasonable was for him to add that his “advice is not to present with anything hard to diagnose.”

I don’t have a choice in the matter. I absolutely would not wish my current state of health on my worst enemy. The level of discrimination I’ve had to deal with is ludicrous. I definitely don’t want another specialist. If I had a dollar for every time I had to be at an appointment I didn’t want to be at, I wouldn’t need to appeal my disability decision. I need to see doctors until I am diagnosed and treated. I don’t know why that’s so hard for non-disabled folks and primary providers to understand.

First primary doctor I saw here told me to “Take a chill pill and lie in a dark bath” during the onset of photophobia. I felt validated when the ophthalmologists almost immediately tried to hand me off to a neuro-ophthalmologist. But he didn’t treat photophobia.

Next primary doctor kept saying I seemed anxious. I was anxious. I still couldn’t see. I was twitching and drooling under florescent light. I was supposed to go back to school on a computer. That wasn’t going to happen unless someone fixed my eyes and/or brain. A vocational rehabilitation professional I was working with, who was blind, warned me that psychiatric medications could complicate my dry eye and make me go completely blind.

Yet the only thing my primary was suggesting was psychiatric medication. I kept having to explain that i didn’t want to lose my remaining vision. And besides, I have people for that. They are my medication manager and counselor. And even they backed off on the conversion disorder theory once the dry eye and the uveitis were documented.

The degree and length of the uveitis promoted the dry eye specialist to preauthorize amniotic bandages for my eyes. It didn’t come to that but when your immune system tries to eat your eyeballs yes. Yes it does make you anxious. Is that just because I have an anxiety disorder? Because I feel like that would make anyone anxious.

And the eyes are just the tip of the iceberg on my symptoms. I have documentation and pictures to back my symptoms up. and I am going to the ENT and dry eye specialist again next week. I am hoping to have their written recommendations for next steps on file so my other provider believes me.

So when I tell you I’m sick, it means I’m sick. And when you tell me I’m “fine,” it’s beyond dismissive.

My newest symptom, which I hope goes away, is spatial hearing loss. I wasn’t able to read much on it but it seems like another neurological issue. So my list of brain issues or potential brain issues is as follows: dry eye that isn’t a gland dysfunction, severe photophobia, vestibular issues with generalized headaches, full-on migraines, ocular migraines, brain fog/memory issues, neuropathy, tinnitus, some kind of autonomic dysfunction, and visual static. In addition to the spatial hearing loss which I’ve only experienced three times this week.

There are other issues I’m forgetting because (ha) that’s what I do. Like the difficulties with word finding and spelling. I am 44 years old. I graduated summa cum laude with a BA in performing arts. I often cannot spell the word “milk” on a grocery list. And I don’t know what “chicken sauce” is supposed to be, but I want no part of it. I battle nausea too much as it is.

I have a migraine specialist but the injection he prescribed made my headaches longer and more intense. When these different specialists try to address different symptoms, they often make things worse. And I’m probably going to end up getting called noncompliant at some point but really, I am just practicing self defense.

No worries? No. Worries.

My New “Normal”

My thumbs are numb already but I did want to post a quick PSA. Keep fighting and advocating for yourself if you know something isn’t right with your body. I had to inquire twice about a cyst and now, as it turns out, I need to have the cyst and an organ removed.

Since the specialist can’t confirm that the cyst is not cancerous until he takes it out, I’m going to have them investigate my infamous spleen cyst. The cyst they keep saying is a calcified breast implant even though I’ve never had implants. The one they caught on imaging two years ago, when I started getting really sick. And yet they didn’t even mention it to me. The one that is theorized to be from a spleen hematoma even though I can’t recall having an injury to that area. The one that hurts very intensely off and on with no rhyme or reason.

From what I’ve been able to search, complications from spleen cysts aren’t common. But I’ve had some rare symptoms and diagnoses lately. So when they say something is “normal” I keep in mind that three specialists have said “geneticist” and suggested referrals out of state. I can’t decide whether I’m an odd duck or a rare bird. Why not both?

So I don’t end on a grumpy note, here is my cat thinking really hard about causing some chaos. Happy Sunday, all.

A cat sits on a windowsill staring into a kitchen sink.
Starlight thinking really hard
A cat sits on a windowsill staring into a kitchen sink. There is a large pink orchid in the sink.
No orchids were harmed in the capturing of this image.

The Eyes Have It

I know it’s inappropriate to refer to mentally ill folks as “crazy.”

That being said? News flash to my doctor: I know that I’m crazy.

But just because I have a history of mental illness, it does not mean that you can just dismiss my documented physical symptoms and insist that I “just need psychiatric medication.”

Psychiatric medication makes my eyes more painful, because they dry them out. This has been explained to you.

Also, if a “normal” person presented with these symptoms, would they be treated the same way? I sure hope not. I feel that I am being discriminated against because of my mental illness. I have been suffering physically for months. This is unacceptable.

When I first developed photophobia, and what was later diagnosed by the ophthalmologist as dry eye disease, my primary doctor noticed that I seemed quite anxious. She suggested that I needed psychiatric medication. The funny thing was, I had been taken off all of my psych meds because of the eye problem. And psychiatric meds would have made things worse.

The even funnier thing was, I was anxious because I COULDN’T SEE. I think that would make most people anxious. And my condition seemed to be deteriorating.

Since then, I have been diagnosed with uveitis. The underlying cause is undetermined. I had a lot of blood tests. They don’t show markers for inflammation, yet. But my eyes will not calm down. The burning abated when I was on topical steroid drops four times a day. Now the burning is back with a vengeance. I am on other prescription eye drops to help “calm my immune system down.”

I have been complaining of episodes of extreme fatigue since I was diagnosed with shingles. That was sixteen months ago. I remember being fatigued even before that, but I assumed it was stress. The fatigue is a bone tired exhaustion. It’s unlike anything I’ve ever felt before. Now I’m so fatigued that I can’t function well on a day-to-day basis. Added to that, I am having dizzy spells where I don’t feel comfortable even driving five minutes to the local grocery store.

I have been depressed many times. I have never been this physically ill.

I know that my blood tests don’t show inflammation yet. The fact of the matter is, my eyes have been inflamed for months now. The eye doctor still thinks it’s an immune system issue. So some sort of treatment would be helpful. I’m dumping prescription eye drops and $40 worth of OTC eye drops into my eyes per week just to keep the pain at bay. This would indicate that there is something physically wrong.

I haven’t been able to work in months. Because of my eyes being the way they are, normal lighting conditions are painful. Even applying for jobs has proved frustrating. There is fluorescent lighting everywhere, and “turn off all the lights in the company/store” would likely not be considered a reasonable accommodation.

I tried applying for an at-home transcription job. Even with the brightness turned down, I could not read the instructions. I have since discovered a dark browser, which has been helpful.

But the truth is, I am running out of money and I don’t know what to do.

My doctor doesn’t seem to care. At least not enough to try something. Do I want steroids during a pandemic? Nope. Am I willing to try anything at this point if it would help me feel better? Yup. Do I want an autoimmune condition? Absolutely not. Do I need help, physically? Yes. Yes, I do.

Instead, I get scoffed at and treated like I’m unbalanced and utterly unintelligent. It’s infuriating.

I wrote to my medication manager, who I saw six days ago. She seemed to think I need some sort of physical treatment at this point. If the med manager and my counselor don’t think it’s all in my head, and they acknowledge that I have physical symptoms, why won’t the doctor take me seriously?

I insisted on the phone call to my primary doctor that I was stable. But I admit that talking about the way I feel physically, I was almost crying. I am upset at being exhausted and in pain. I have every right to be. It does NOT mean I am unbalanced or delusional.

They can’t see inflammation in my blood. But the eyes have it.

The Waiting

I’m trying really hard not to be frustrated.

My ophthalmologist saw inflammation inside my eyes, but he is not sure as of yet what is causing it. My eyes are burning a lot, but I’m not sure if its from the inflammation or from these lovely steroid drops he prescribed. I think I will call the office in a bit and ask if I’m supposed to feel any relief yet.

His hypothesis two pronged. The inflammation may be due to a virus that I caught, such as a cold. If the steroid drops do not resolve the issue in a few weeks, then my condition may be an autoimmune disorder. He mentioned lupus, specifically. For those of you who don’t know, autoimmune disorders cause your immune system to attack perfectly normal parts of your body. In short, it’s no fun. Chronic illness is exhausting, and I seem to add more chronic conditions to my catalog every year.

Because of one chronic illness, obsessive-compulsive disorder (OCD), I wear a mask, even though I am fully vaccinated. I wash and sanitize my hands constantly. I do not know how I would have caught a virus. I have no other symptoms that would indicate the presence of a virus.

This is concerning.

I do not want an autoimmune disorder, especially in the middle of a global pandemic. But I’ve been telling doctors for the last 18 months about a variety of troubling symptoms. I’ve had swelling in my ankles, frequent urination, a variety of rashes, swollen lymph nodes, and fatigue. Since I had an episode of shingles last year, the fatigue has gotten worse. So much so that some days, I feel like I’m going to drop.

I may be through with chronic illness, but it seems chronic illness is nowhere near done with me.

And, since my eyes are still burning almost a week into treatment, I’m guessing I don’t have a virus.

I recently abandoned my photophobia support group online. Most of the people there were trying to be helpful. But they all seemed to assert that their diagnosis MUST ALSO BE my diagnosis. Two gentlemen were trying to tell me that I just had a migraine with no pain. They were extremely condescending about it. And they were dead wrong. I know well what an ocular migraine is. I have extensive experience with them. I have never had one that persisted every single day. for over four months.

Another option that members repeatedly suggested was Irlen testing. It seems the FL 41 tint I was prescribed for my eyeglasses doesn’t work well for everyone. So folks often find a diagnostician through the Irlen website, and they see what tint or combination of tints work best.

I live in Idaho. I tried contacting the local diagnostician. No dice. I tried to contact the traveling diagnostician. The closest she might be coming is about seven hours away, in northern Idaho. My other options were to travel to Iowa or Nebraska for a diagnostic test. The Irlen method, so I’m told, is considered alternative medicine. So not only would I have to pay for travel and accommodations, but I would also have to pay for the test and an expensive pair of glasses.

I cannot work consistently because my eyes are inflamed. I am not about to travel to another state for something that “might” work. I know a lot of people who have tried alternative methods to relieve chronic illness symptoms. But at this point, fiscally, its just not going to happen.

And the burning in my eyes has some root cause. So now, I wait. As the late, great Tom Petty observed, “the waiting is the hardest part.”

Speaking of things I am tired of waiting for, I am so sick of this pandemic. I am sick of those who are making it a political issue. Its airborne, you nitwits. Cover your holes. Wear a damn mask. Get a vaccination, unless you are too young or you have a legitimate medical reason not to. Protect those who cannot protect themselves. Love thy neighbor. Stop saying you are a Christian and just be Christ-like.

I am terrified that the cases rising here in Idaho will lead to the powers that be shutting the schools down. It isn’t fair to my son to be cooped up and isolated any longer. It’s also not ok to put him at risk with this Delta variant out there. Get some critical thinking skills, and some compassion.

If you work in healthcare, show that you believe in science. Stop protesting in the name of this “personal freedom” nonsense. Because that is what it is. Its nonsense. I would be beyond furious if I knew a healthcare worker exposed me or my family to a potentially fatal disease. I have no sympathy for those who may get fired as a result of not getting a vaccination. Your right to freedom does not supersede my right to survive. If you believe it does, you should not be working in healthcare in the first place.

If I do have an autoimmune condition, my options are using medications to suppress my immune system. This would raise my susceptibility to catching Covid-19. I was on a steroid pack once in college. This increased my likelihood of picking up random viruses. I ended up with mononucleosis. A nasty case of it. My then-boyfriend did not have it, and I never shared utensils or cups. The doctor hypothesized that I got it from the communal drinking fountain at the school.

In the current conditions, if I took immunosuppressant drugs, I would most likely need to be house-bound. Because people are too consumed with their liberties and not concerned enough about other people here in Idaho. I guess its a good thing Idaho discontinued the “Idaho is too great for hate” license plate. It’s false advertising. Read any local news comments section, and you will see what I mean. Hateful, willfully ignorant folks with an unearned sense of entitlement.

I am physically and emotionally sick. My chronic illness is debilitating at this point. I need to be able to get treatment so that I am not exhausted every day. And I am beyond exasperated.

So, do your chronically ill friend a favor, and help protect those who are ineligible. Get the shot.

The world is waiting.

Smoke Gets in Your Eyes

Hello, party people.

I know I keep saying this, but I don’t think I’ve ever been this tired. But I am also very tired of seeing doctors. So I guess I will continue to fight through the fatigue and keep on keepin’ on.

I have theories as to why I feel so tired. I feel terrible that wildfires are ravaging the west coast. But smoky conditions make my eyeballs into dryballs. I’m having to put eyedrops in 8-14 times a day. It’s more than annoying, as I don’t know who will want to hire me outside of my own home when I am constantly running to my car or to the bathroom to lubricate my peepers. The home humidifier helps a lot, so I really don’t know how frequently I’ll need to attend to my eyes in the real world.

Which leaves at-home options. I am currently applying for a transcription job, but the extended application will take quite a few hours. I’m not doing so great in the practice test. I wanted to go back to school for medical coding and billing, but I’m not sure how many hours per day I can handle on a computer without negative consequences the following day. I’m guessing at this point that I will only be able to work part-time.

And as I am running out of money in savings, I have to find a “survival job” sooner rather than later.

I started this entry several days ago, and had to give up on it. Too many hours on a screen caused a few painful days of recovery.

And, as soon as I gave up applying for a transcription job, I found an extension called “Dark Reader” in the Edge webstore. Of course. But, moving forward, this may enable me to spend more time on the computer and apply for other jobs. A small victory! I did give up and schedule yet another appointment with the ophthalmologist. My level of functioning on a daily basis is still not consistent, and I need help.

Time to be the squeakiest wheel.

Not only is smoke in my eyes, but fog is in my brain. I seem to be forgetting things and screwing up left and right. My cognitive ability, which went the way of the Dodo sometime in March, is still not in full force. We have to go back to complete school registration next week and attend to an error I made when submitting the annual update through the campus portal.

I am hoping to God school stays open this year. My kid is going back in-person. I wish the Delta variant wasn’t a thing. I am worried about the schools having to go hybrid or shutting down entirely. Which would mean more devastating isolation for my child.

It’s not okay that so many Idahoans (or Americans) do not take this virus seriously. It has caused horrible complications for those of us with disabilities and underlying health conditions. It isn’t fair to my child, who has mental health struggles. He also has anxiety about potentially spreading this disease, even though the members of our household have been vaccinated.

So me and mine are masking up almost everywhere we go now. I abandoned the mask last night to attend an outdoor performance of A Midsummer Night’s Dream by The Boise Bard Players. Not only was the play outstanding, but I saw three of my old theatre friends. It makes me feel terrible that those of us who actually made it in the field have had their lives, passions, and livelihoods so adversely affected by this terrible virus. I used to live vicariously through their experiences, and I was so happy that they were still able to work in the performing arts. I saw locally and through social media how hard they had to work to survive and/or reinvent themselves. I applaud their versatility. But I think it’s utterly tragic that selfish people, or those spreading disinformation, won’t take proper precautions to ensure that live performances can continue to flourish.

Speaking of performing arts, after last night, my kid can’t wait to audition for The Boise Bard Players when he is old enough. He takes after his mom.

I am so happy that I found a dark filter for websites. But I think I’ve reached my limit. Have a good weekend, y’all.

No More Tears

I’m going to have to do this quickly. Being on the computer hurts. Luckily, I dictated most of it for the THIRD ophthalmologist’s benefit. Thank you to Ozzy Osbourne and Lita Ford for the assist on the title and subtitles. You guys rock.

Here is the timeline of my lovely neurological symptoms.

March 31st– I received my first COVID shot. I was overjoyed, as an asthma sufferer and a (technically) obese person. That’s two strikes. My son also felt safer, as an added bonus.

April 7th-started a new mood stabilizer, 20 milligrams. On April 13th, my provider increased the dose to 40 milligrams

April 20th-My vision problems began. I noticed excessive blinking in the car. Then my vison was blurred and I could only focus with one eye or the other, especially when watching TV or looking at a screen.

April 21st-I received my 2nd COVID shot. Huzzah.

April 23rd-started 1 milligram of brand-spanking-new controlled substance.

April 25th-My provider, concerned about the vision side effects, had me cut back to 20 milligrams of the mood stabilizer.

April 26th– I discontinued the mood stabilizer.

April 27th-put back on 50 milligrams of my old OCD med and 2.5 milligrams of my trusty old antipsychotic nightly.

I noted other symptoms, such as fatigue, sometimes extreme. I also started twitching while trying to focus in light, and I would also twitch for an hour or two at night before I went to bed.

I was told the new mood stabilzer should have cleared my system, and that I should follow up with the doctor. I started drooling and twitching to an extreme on May 1st. I got out of the shower, and a whole stream of drool escaped from the left side of my mouth. I thought, “Well, that’s not good.” But I have a history of overreacting to symptoms. So I held off on medical care. My vision was increasingly blurred. I confided in my friends, and they suggested I go to the ER.

May 3rd-I called St. Luke’s urgent care when I did not receive a response from my regular doctor’s office. They told me to go to the emergency department because of the blurred vision and drooling.

The hospital experience was interesting. They didn’t tell me what they were looking for. They just wanted to run a lot of expensive tests on me without telling me why. When pressed, a nurse told me that the tests were due to the “emergent situation.” The MRI and blood test appeared normal, except for white lesions on the brain. They speculated that these were from concussions an migraines. I had migraines in childhood, and migraines when my prescriptions needed an update, but other than that, I don’t have an extensive history with them.

Trussed up like a turkey from all the wires, they told me to call if I needed anything. Then they put the call button far out of reach. I complained of my extreme light sensitivity at the beginning of the ER visit. At the conclusion, after three hours of stress and confusion, the doctor asked if my headache was better.

Wow. Color me unimpressed. I’m glad you eliminated anything life-threatening. But after you administered no treatment as I twitched under three relentless hours under fluorescent lighting, you had the audacity to ask that question? I was offered migraine medication. If it was a migraine, I would have figured that out on my own. I’m glad I wasn’t having a stroke, which was what they didn’t tell me they were looking for. But come on, people.

May 4th-I followed up with regular doctor. She was kind enough to turn down the lights. She then told me to “Take a chill pill” and go lie in a dark bath. I did not find her comments helpful, and she wanted to discontinue my psychiatric medications. My medication manager later agreed. But I had gone off all psychiatric medications a month prior, and it was a nightmare. So I objected to this course of treatment, but after a few days I stopped my medications because nothing else was helping. My regular doctor also suggested that I discontinue all antihistamines that I use to control my severe seasonal allergies.

I followed up with ophthalmologist a few days later. The first ophthalmologist prescribed steroid eye drops in the hopes that if there was any inflammation, it would solve the issue. My photophobia got much worse. I was seeing auras around every light. I was seen in the ophthalmologist’s office again a week later, and was referred to a local neuro-ophthalmologist.

Meanwhile, I called the ophthalmologist’s office to ask what to do about the severe pain in my eyeballs. I was told to go to the ER for unbearable pain. I was asked if I was wearing sunglasses, even inside the house. No, I’m sitting here like Malcolm McDowell in A Clockwork Orange. Of course I was wearing my sunglasses inside! I couldn’t function otherwise.

Crazy Train

Almost two weeks passed, and I kept calling the specialist’s office to see if my referral was approved. It was ultimately declined, because he does not treat photophobia.

Yes, I cried like a lunatic. I was unable to see normally and no one could tell me why. And all of the doctors I saw were refusing to try anything.

In the meantime, I changed providers to a primary care doctor at St. Luke’s. I also consulted with the medication manager, who at the time had no idea what could be causing this. She eventually suggested it might be conversion disorder, where a patient develops legitimate neurological symptoms stemming from a psychiatric disorder. It was not very encouraging.

My third and final ophthalmologist visit, I was finally diagnosed with dry eye syndrome. Apparently, a switch in my brain that tells my eyes when to lubricate is malfunctioning, perhaps as a result of that bad-for-me psychiatric medication. They didn’t tell me an official diagnosis at the time. No, I had to call back and clarify with the assistant. The doctor gave me punctual plugs. He didn’t explain that these were medical devices put into my tear ducts until after he approached me with a tool aimed at my eyeball. Yikes. He also prescribed rose-tinted glasses. “Lifetime Cynic Prescribed Rose-Colored Glasses.” I can see the headlines now. Actually it’s a more specific tint called Fl 41. It’s supposed to block specific wavelengths of light that are bothering me. Mostly sunlight, fluorescents, and screens.

And the kicker is, I will have to wear these new glasses ($535 for one pair), from the moment I get up until the moment I go to sleep.

Let me say this for the medical “professionals” in the back. When someone is losing their vision, it is NOT OK TO PATRONIZE THEM AND TELL THEM THAT THEY NEED TO GO BACK ON THEIR MEDS. Starting to lose a major sense, such as your vision, is terrifying FOR ANYONE. Additionally, going back on my medications would have only made the eye condition worse, according to my medication manager. Our options for effectively treating the mental illnesses, sadly, are now greatly limited.

If I Close My Eyes Forever

…will this headache go away???

My symptoms fluctuated from day to day. I always had to wear sunglasses no matter what. Sometimes, I had a searing pain in both eyes. I started taking ibuprofen when this happens and it seems to help. Sometimes, I just had to put a sleep mask on and wait for an hour or two until the pain went away. Eye vitamins and magnesium have also helped a bit. My boyfriend bought a whole-house humidifier, which I am grateful for. It’s no fun having dry eye syndrome in an extremely dry climate.

I called the ophthalmologist back again and was told to add fish oil to my supplements. And I was informed that regular eyedrops have preservatives. That’s why they sting after a while. Nightly warm compresses will also help. All of this would have been good to know from the get-go. It’s not like I could see to research it much on the internet.

I have had these new, FL 41 tinted glasses for just over a week. My vision is still hit and miss, especially on the computer. I still suffer from frequent headaches. I have to take eyedrops with me wherever I go, and stop along the way to put them in if I’m driving. I can now drive for short distances, though. It’s exhilarating.

I worry about whether this will improve further. It took two weeks to get this blog entry finished. I’m going to give it another week, and then call the ophthalmologist’s office AGAIN if I see no improvement. I need to go back to work. My planned appointments with vocational rehabilitation were cancelled as a result of this condition. To reapply, I am going to have to start the months-long process all over again.

My eyes have had it. Sorry if there are typos. Until next time…

In a dark place

All right, boys and girls. Everything in this blog post is going to be talk to text. This Ohta be fun. So, the third time I called the neurologist office, they informed me that my referral was declined. The reason why is because that specialist does not treat people with my condition. You would think that the ophthalmologist office would have figured that out before referring me, but no.

I heard from my physicians office in the last hour. They say there are only two or three specialists that deal with the eye and the brain in the area. I am hopeful that at least one of them treats photophobia. The last ophthalmologist visit I had, the ophthalmologist said we could just hope this went away as mysteriously as it occurred. That is not very encouraging to me.

I am concerned that I have seen six doctors in the course of the last month for this condition, and no one has no idea what to do about it. They don’t even know what specialist to refer me to. Their only plausible explanation was that it was caused by a medication side effect, but I have gone off all my meds including my antihistamines at one point, and nothing has helped.

And now the medical bills are starting to come in. I am hopeful that my secondary insurance will cover some of the large cost that they completely useless ER visit incurred. If not, I may soon be forced to file for medical bankruptcy or the like. So I’m hopeful that at least some of it will get covered. But it’s not fun to be in a dark place, literally and figuratively.

If anyone knows anything about photophobia, send the information my way. I may have to have somebody else read it, but at least it would be a start. In the meantime, I am going to try to find some fun things to do they don’t involved having to use my eyes. Thank you for letting me vent.