French Fried Eyeballs

Hi there.

I have elaborate plans for blog entries. But getting one done takes weeks. I can look at the computer in short bursts. Sometimes it makes me dizzy. Working on establishing an underlying cause for the vertigo. It is very frustrating.

My eyes developed a sensitivity to the special lubricant eye drops, I think. Dry eye guy saw inflammation on the outside and eyelids (as opposed to the inside) which is good. Discontinued those drops. Finding that some others also irritate my eyes. They are preservative-free. So. Am I allergic to the water in them??? Maybe I am becoming a vampire. Made a list comparing ingredients.

Started Restasis. Trying to reinvent myself and work off the computer, somehow. Fluorescent lights are still awful. Wish me luck.

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.

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.