July has been an interesting month. We spent time with old friends and their growing families.… Hold a crying 1 1/2 year-old until he cuddles in and goes to sleep fills my soul. A wedding that was a first anniversary because of the “great reset” forcing a rescheduling. Fourth of July… a simple walk down the street to see the town fireworks.
A full month of bio identical HRT. A concierge doctor means have a health complaint and need advice, typically get same day… call with the doctor for over an hour! This is real care. A real doctor looking at everything. …But still not ready to share.
I also spent a mandatory week in glasses. I am severely nearsighted. I do not see well with glasses but you need a week free of contacts so your cornea is not contoured by the contacts. The lens of glasses are too far away, so for a week I was pushing up my glasses, struggling to see, on top of dry eye ….which is no joke.
Why? Because the Neuro-ophthalmologist said it would be good to see if I was a candidate for corrective eye surgery. The deterioration of my vision due to dry eye and the new procedures available may prove surgery to be a good option.
She used yellow drops – which I have had regularly in the past 2 years. The Neuro-ophthalmologist said the dry eye wasn’t terrible and that it was not worsened by small fiber neuropathy (SFN). Regardless of these two things she scheduled me for a consult with a dry eye specialist and the surgical consult.
This specialist led to other revelations. My lights sensitivity is worse than I let my brain register. Before pituitary surgery I was so severely light sensitive that I spent all my time in darkened rooms but once the tumor was removed it got significantly better. I didn’t realize I was missing something. I hadn’t put into words. I knew I was still light sensitive but I was not cautious indoors the way I used to be. I know my eyesight has gotten worse but I did not realize light was so painful. Something newer… I think. I don’t believe it was my mind protecting me from something else being wrong.
The specialist used the yellow drops and so much light shined in my eyes, my eyelids and forehead were in spasm. …They give you a break before taking one more look. Sigh!
But then… BUT THEN he used the blue drops (I had no idea there were blue drops but why would I) and he said he was surprised at what he saw. The whites of my eyes, not covered by eyelid, turned completely blue. This is not “in certain spots“ as I have been told over and over. It is my whole eye. It is why my eyes hurt. It is why I cannot see.
I calmly but sadly asked why didn’t the Neuro-ophthalmologist and the dry eye specialist use the blue drops and he quietly said I do not now.
If I had not gone for a consult to simply see if I had options for an elective surgery (but it can be paid for when you have the right eye problems FYI) I would not have these incredibly important answers.
I asked if I had Sjogren’s Syndrome? It comes up all the time as a possibility. It often does not show up in blood work for decades like many autoimmune diseases. It can be officially diagnosed by a doctor when all things point to it. Severe dry eye, dry mouth, dry nose…. And anything else that relies on salivary and tear glands. Oddly the dry nose has been newer – the severe part of it. It’s a bizarre feeling but one I’ve added to the list, not thinking of Sjogren’s but wondering about allergies.
But for a full year now Sjogren’s is always brought up. I have now done my research — the final piece of the puzzle for me was the presence of small fiber neuropathy, SFN. As I have written before, SFN is poorly understood, really, misunderstood by most doctors I come in contact with. Foolishness really. But SFN is present in a large number of autoimmune diseases… and as I have written, just about every month, many doctors say I probably have an autoimmune disease. Why are they scared to write down a diagnosis? This doctor, seeing me for elective surgery, is the one brave enough to say I am diagnosing you with Sjogren’s and adding it to your symptom list.
Thank you kind sir. You did right by me! In unison, we both said Noooooooo (While shaking our heads) to me having surgery. He even said please don’t come here for elective surgery. Don’t ever have eye surgery unless things greatly improve. The risks for someone like me is at the least worsening of my vision and dry and yes, at its worst blindness.
SFN (which the Nurophthalmologist said wasn’t affecting my vision but who knows she didn’t use blue drops) could still be present. And if the newer surgery that produces better results was done the little cuts that are deeper than typical Lasik could be the reason we find that SFN is in fact in my eyes and it would be disastrous. They’d cut nerve endings. Just the top of the eye, so the tip of nerves, could grow back but down towards the nerve root, they will not. Talk about getting your moneys worth with a consult! Why are the regular doctors not treating me this way… Thinking outside the box, going the extra mile, …stretching their arms past the yellow drops for the blue ones. Why have I never seen the blue drops?
Did you know your tears stay on your eyeballs for seven seconds. This is the moisture that keeps you seeing clearly. Me – it’s like rain. It just falls and when I blink it might drag it up a little bit but it falls right back down. My tears don’t have the viscosity to stay up so as the specialist put it, every time I blink my vision is different. Yes!! Yes, that is exactly what is going on. My prescription is not changing but my eyes are.
When you go to the eye doctor and they make you stare at the board and say just look at it for a while and see if you can read it… I have come to say but that is not my site. Haven’t we all seen somewhere on social media “if you can read this it’s because your brain fills in the missing letters… the backwards letters, the misspelled words.” Of course if I stare at blurry words long enough my brain will be able to guess the correct answer. So I now refuse. If I can’t see it within the first three blinks I am not going to guess for you. This means when I’m out driving and there is a street sign I have to stare at it for a few minutes. Literally, they tell me to stare at the letters for a few minutes. “Take your time.” Do I have that time when I’m driving? How about just watching TV and there’s a quick subtitle? I was at the store and I couldn’t read, with my glasses, that the credit card machine said “print and email receipt or just print.” Am I suppose to stare at that for five minutes? What about the people waiting in line behind me! This is not beneficial for me. The fact is I cannot see.
I did not fear pituitary surgery, pituitary radiation, having my jaw broken, I did not fear dying of the flu after I had radiation and I was hospitalized for a week and I sure as hell do not fear the VID. But blindness, blindness makes me very nervous.
I will go back to the dry eye specialist. The surgical consult specialist has reached out and my chart has been updated. There is one other doctor he might pull into my care team but he only listed him as Dr. E. So I have no idea who he’s talking about even to look him up.
If I hadn’t gone for a consult – I would never have gotten the answers I need or the diagnosis. Because of one amazing doctor and his use of blue eyedrops I have answers.
I do not feel well but I find joy in the moment. We’ve walked the pier that shoots out onto Lake Ontario. And then I cannot move. Two days later we walked the boardwalk over the Genesee River. Then I feel paralyzed. Then in the early hours of Sunday morning I woke up with severe vertigo. It’s like I’m strapped a record player and my whole body is spinning. Wednesday we ventured back out to the beach to walk the pier. It was a lovely day with the sun shining and breeze being on the water. It was too lovely to go home and the walk exhausts me. We went to find some Bubble Tea. Today we have rain. My thoughts are not clear but this post was mostly written and a once a month goal is once again down to the wire. I persevere.
I choose joy or my life will be miserable.
I’m grateful to be back in contacts as they hold moisture in and since they’re right on my eyeball I see much better AND I can put my sunglasses back on! There’s a lot of blinking to see clearly but I’m working on it. They do dry up and literally fall out of my eye at the strangest times. This is not good but I am currently managing.
Keeping up a blog, even just once a month, is a lot of work for me. But some people stumble upon it and find their strange symptoms have answers. Maybe not the same reasons but maybe I give someone questions to ask or the strength and courage to walk out on doctors and look for more answers.
Some new terms have been appearing on my chart. I have to decode them. This eye journey is simply a new direction I must follow.
Sjorgrens KCS suspected due to DES, dry mouth along with small fiberneuropathy
Significant LG staining today that fits with pt’s symptoms of discomfort
Never lose sight of your worth.