Damn Your Eyes

A note about my eye exam today:

I need to update my blog more often — for myself, more than anyone else. This morning, I had my first eye exam in 7 years and I looked back here to see if I’d said anything about the last time and saw I’d had a reaction to the yellow eye drops. I had no memory of this and it saved me from possibly having another reaction today for a not-really-needed test. So, I’m going to make a note about today’s experience to remind myself in the future not to bother going to an ophthalmologist again!

My vision was 20/15 the last time I had my eyes checked. I never needed glasses at all until July of 2020, when I realised I couldn’t see my vein very well when putting in a peripheral IV catheter to do IVIG. Since then–not even 2 years–I’ve gone up 3 magnification strengths and my right eye has significantly worse vision than the left. My distance vision is a little worse, too, which I realised when my husband (who is 12 years older than I am) could make out signs on the highway that I couldn’t.

July, 2020: The first day of the rest of my farsighted life: I had to borrow my husband’s glasses to put in my IV.

Of course, this is totally normal for people my age, but my brother started to need glasses after spending time on a submarine and had a theory that it was because he didn’t focus on anything more than about 8 feet away for so many months. I think this might hold some truth for those of us who spend so little time outside, looking at horizons and focusing on long distances.

I have a ton of eye symptoms, which bother me much more than the need for readers, but I’ve been told there is no remedy for any of it (except dry eyes). I was told in the past: “When your overall health is poor, your eye health is poor, too.” The ophthalmologist today actually said that my eye health was good, but my symptoms are probably neurological (migraines, dysautonomia etc).

Some of my eye symptoms are: floaters; blurriness; pain in orbital muscles when moving my eyes; itchy eyelashes; dry eye to the point that when I blink in the mornings, my tears feel like acid hitting my eyeballs; right eyelid spasms; light sensitivity; trouble tracking when scrolling on my phone or reading blocks of text; migraines that feel like my right eye is going to explode out of its socket (it’s silly, but I often push my eye back in with the palm of my hand because it really feels like it might pop out). I used to say that my eyes felt like I’d put grit into Vaseline and then smeared it over my eyes.

I have had radioiodine ablation on my thyroid for Graves disease (or some sort of autoimmune presentation of hyperthyroidism–endocrinologists have disagreed on whether it’s actually Graves) and was told to pay attention to eye symptoms, but the doctor today didn’t see any evidence of that being a problem. I am also positive for one of the Sjogren’s markers (carbonic anhydrase VI IgG antibodies), which ophthalmologists treat no differently than dry eye. He rattled off a bunch of things that I’ve tried in the past that have done nothing (eye drops, eye scrubs) and some I haven’t (take omega 3s, humidifier in bedroom).

He said my optic nerves, blood vessels, maculae etc were all normal. During the visual acuity test, none of the letters were sharp, but I could guess most, even though they were blurry. The doctor said my vision was considered 20/20 because I could guess 3 out of 5 of the bottom line, adding he wouldn’t be able to see any of them at all. This is the thing when you’ve had great vision your whole life–you don’t really know what is “normal” or acceptable.” I hate not being able to see the letters clearly, but being able to guess them at all, even though I was straining and it was very blurry, is still considered 20/20.

They said I am doing no damage to my eyes using the cheapo 3-pack of Costco reading glasses. It doesn’t matter what strength I use or whether I use different magnifications (I have various glasses scattered in different rooms) or whether I’m using the lenses that work for one eye, but not the other. Essentially, if you can move the phone/book closer or further away and make it work, then everything’s fine. They said I could get prescription glasses, but, if I’m getting by, there is no need. I don’t want any more energy expenditure on anything, so I’m sticking with what I’m doing. My husband was mildly alarmed by this: But if you can get prescription glasses that correct for the differences in your eyes and it makes your life better, why not? Energy is why not. It all comes down to having nothing extra to give.

For anyone with MCAS, I have had the yellow eye drops 3 times and, the last time, I had a reaction. A friend told me I could ask for a retinal scan in lieu of dilation, which I did and it was easy and only took a few minutes. Once in the past, I was told that one of my eyes had high pressure (intraocular fluid pressure) and this can be a warning for glaucoma and I should keep an eye on it (I just caught that totally unintended pun when I did a reread 🙂 ). The gold standard for checking eye pressure is the use of yellow numbing eye drops, which are used with a slit lamp and blue light. A step down from that is a handheld tonometer, which still needs numbing drops, but they don’t have the yellow dye. Lastly, there is a device called an Icare, which doesn’t need drops at all. The latter would have been my preference since I don’t know what caused the previous reaction (the dye, the numbing medication or the preservatives), but they didn’t have one at the location where I had my appointment today, so I decided to skip the pressure check, thinking/hoping I probably don’t have a problem.

Lastly, I want to note that this was BY FAR the most risky covid exposure I’ve had (or, really, just human germ exposure, in general). The rooms are tiny with no windows or ventilation and the doctor and his assistant both had to get very close to my face. Also, they cancelled my appointment last week because the ophthalmologist was out sick and I wonder — out sick with what? Even a head cold would be a deal-breaker for me. All in all, I regret the appointment because the risk of contracting a virus was very much outweighed by the chances that I have eye problems that can be remedied (I now know). But I didn’t know what was normal or should be treated and I certainly would want to know if intracranial hyper/hypotension was causing any eye damage (as seen on a CINE MRI, I have blocked cerebral spinal fluid flow in my brain because of low-lying cerebellar tonsils, which can cause intracranial pressure issues). I didn’t know if wearing shitty readers could damage my eyesight further (they can’t) and I didn’t know if having worse vision in one eye was a concern (it’s not) and I didn’t know if I could brush off all of my eye symptoms as neurological (I can). Now I know and you do, too. 🙂 Title Credit

Can I get a witness?

I had a terrible reaction to an innocuous treatment yesterday. Again. Was this close to calling the paramedics, fighting to stay conscious on the bathroom floor. This one wasn’t like the tortuous 7-hour marathons of faux-malaria, this was swift, severe and very scary. It took over my body so quickly, I thought it might be anaphylaxis, but it was more than that, honestly. With the crashing blood pressure, I got instant violent shakes and chills to my bone – it came on so quickly! – and, this time, a skyrocketing heart rate. I’m used to being cold and clammy and unstable, but not in such a quick and fierce way, from totally fine to yellow/grey-paloured and ghost-like. From feeling good to feeling like I should be hospitalized in a matter of seconds.

I’ve got so much to write and no energy to write it. Every day is a calculated climb to become stable and, as soon as I gain some ground, something – food, medicine, overexertion, emotion, bad night’s sleep, GI problems, menstruation – sends me toppling down and I start the ascent all over again.

I haven’t taken vitamins or supplements since Christmas. Everything is on hold. 5 months since I left my house and went to the rentals after the bad reaction to Cromolyn and, ever since… Life, interrupted. 5 precious months in freefall. I can’t address candida or methylation or leaky gut or adrenals, I can’t take immune modulators or antivirals or sleep drugs or any of the other things I want to try because right now my only focus is: keep your bowels moving, keep your blood pressure up, keep your blood sugar stable, try to sleep.

My father is visiting and it’s like lifeforce. A reminder of where I come from and why I fight. It may feel like we’re forgotten in our four walls – no one to bear witness to the worst of it, unable to accurately describe the severity of illness and the complexity of emotions, putting on a brave face for parents, children, friends, healthcare workers, while, inside, we are screaming, moaning, constantly scanning our dysfunctional systems – but, all of us are loved and thought about by someone, somewhere. And we all have warrior sisters and brothers who understand what it is like to fear death – or, worse, painful, sick, unstable life – alone and misunderstood.

To all of you, even those I don’t know: I see you, I witness your struggle, I know the strength it takes to live the fear and then smile through it, even with something as simple as an exclamation point on a Facebook post. ❤

Title credit.

Oh, Christmas Tree. Oh, Christmas Tree…

We’ve always had a real Christmas tree; decorating it and wrapping presents to place under it has been half the joy of Christmas for me. A few weeks ago, I bought an Amazon Local deal: $20 for $40 to spend at a nearby Christmas tree lot and then I realised… we probably shouldn’t get a real tree this year. I am reacting to everything lately and I’ve been bothered by the small tree in my meditation room and the soil it sits in. Last Christmas was the lowest point in my ME journey so far and I’ve gone downhill since the summer, so I really don’t want to aggravate things by having a smelly, potentially moldy tree in the house for a month (most asthma and allergy sites I looked at recommended against a real tree). I even asked in my MCAD group and the vast majority of those that answered get a fake tree.

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So, we bought a fat 7.5′-tall artificial tree from my friend for $150. He said it was used once and kept in a back bedroom all year. My husband opened it up and we let it sit and air out on the porch for 5 days and then he moved furniture and broke his back bringing it inside, setting it up, and tweaking every branch and twig for an hour to make it full and beautiful. When I came through my vapour barrier from upstairs, before I’d even looked into the room and seen it was up, I knew the tree was there. It was like walking into a wall of smell. I couldn’t identify the smell. It wasn’t a plastic smell and it didn’t smell like dust or manufacturing stench, but it was a very large smell. I’d go into the kitchen to get something to eat and, as I walked back into the sitting room, I would stop short as I hit that fetor again. Over and over, the heaviness of it took me by surprise. My throat was burning, I got headachy… Normal issues for me, yes, but I felt like it was the tree. Or, at least, having those symptoms while being enveloped in that smell, correlated them in my brain. To add insult to injury, it is a really high quality, pre-lighted tree and the lights are SO INCREDIBLY BRIGHT in our small room, that it hurts both of our eyes and leaves spots in front of our vision. I thought bright lights were a selling point, but not in my world, of course. Central immune system sensitization is like an evil super power.

My husband, stony-faced, took it back outside while I apologised profusely for my fucked up body and my inability to do any of the heavy lifting. The guilt can be all-consuming.

I spent the next three hours shopping online for hypoallergenic artificial trees or green/healthy trees to no avail. Then I went on Ebay to look for metal trees and found these two for $100:

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Scentless (hopefully), washable… I started to get hopeful again that there could be something pretty to hang our ornaments on and create a festive feeling. I emailed them to my husband, bothered him at work to take off his rain gear (he’s a landscaper in Seattle) and look at the links (he hated the scroll one, but thought we might be able to do something with the spiral one)…

But then I found these metal trees on a different site:

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Twice as much, but maybe a good investment? I texted my husband again. There are no gold spiral ones left and only 2 black ones! We have to hurry to make a decision! Then I realised that they didn’t even guarantee Christmas delivery. So, best case scenario, we’d get it a few days before Christmas, which just doesn’t seem worth it when the whole pretty and festive lead-up to the day is what I enjoy (plus, it takes me weeks to decorate a tree with my energy level — a few ornaments a day) and, worst case scenario, it’d arrive after Christmas and be useless to us this year… and then probably go on sale in January.

I told my husband forget it, we’re shit out of luck.

Theeenn… I checked my emails. Somehow, while shopping for trees on my phone in my bed at 1am last night, my finger had hit “one click ordering” on Amazon (a really evil option that doesn’t bring you to a different screen to look at your shopping cart or confirm your selection, it just orders it — in “one click”) and we have an artificial “pencil” tree coming in the mail. I emailed the sellers because it said it hadn’t been sent yet: “Accidental order! Please cancel!” They answered that it couldn’t be cancelled and we’d have to pay to return it. To add insult to injury again, it’s not even on Amazon Prime and won’t get here until December 20th. And, of course, it’ll probably smell. And it’s made in China. So, we’re out $320 and our porch will be crowded with fake trees and, even if I manage to sell them on Craig’s List, my husband will be the one who has to deal with moving the trees, meeting the buyers etc. I honestly feel like I could take this all in stride, have fun getting creative and see the lighter side of this, except I’m just so guilty that my husband has to do all the work!

My new plan is this. I’m sure my landscaper hubby has a tall ladder:

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Addendum: Just as I was about to hit publish on this blog post, my husband called me and said, “I’m in Home Depot. The artificial trees are all $300+ and most have fake scented pine cones. I’m standing in front of the tomato cages. They’re 5′ tall and cost $3.97.” Hahaha! Hell yes! I had sent him this photo as a joke:

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We both laughed at the fact that we are going to have a wire tree that cost $3.97 and now I think this will actually be really ridiculous and fun. Happy Christmas! 🙂

Codeine Allergy?

I am going to tell the story of what happened to me yesterday so that maybe someone out there won’t feel like they are alone or crazy or dying. I searched the internet on my phone for hours and couldn’t find anything similar to my experience. Doctors don’t believe this sort of sensitivity exists ~ even my doctor who knows me well has looked at me incredulously when I describe how a painkiller affects me. But I would have NEVER guessed that my body has become as sensitive as it has. I knew I could feel the effects of very low doses of drugs, but this takes it to a new scary level.

A few days ago, my headache came back and I took 500mg of acetaminophen. It didn’t really touch it. Yesterday, my headache was bad, but also my neck was in pain. It wasn’t terrible ~ I could have powered through it by just going to bed early ~ but I thought, I haven’t taken painkillers in ages ~ since Christmas, really ~ so a Solpadeine will be quite effective and probably won’t give me a bounceback headache. Solpadeine is 500mg acetaminophen and 8mg codeine. They are like Tylenol 3s, except Tylenol 3s have 30mg of codeine. They are over the counter in Ireland and I’ve taken them on and off my whole life. The dosage on the box is two tabs dissolved in water. I took one. A little while later, I was hit by a freight train. I am not exaggerating. I’ve never taken oxycodone, but it felt like I imagine that must feel. I was high, which was odd because it has never happened with Solpadeine before, but that’s fine. The bad part was my lungs immediately closed up. I was fine one second and I was having a VERY hard time breathing the next. It’s not like you are out of breath or in pain or wheezy or anything, you simply have to work very hard at inflating your lungs and it is terrifying ~ I’m surprised I didn’t go to the ER, but the ER can do two things: give you different drugs to counteract / help the reaction and give you oxygen. I wasn’t going to take any other drug. This happened from ONE SINGLE OTC SOLPADEINE! So, who knows what else my body will react to. I wouldn’t have minded the oxygen, but not enough to spend that kind of money while sitting in a building of flu. I knew, if it got worse, I’d have to go no matter what, but I decided to monitor it.

During my research, I discovered a few things: for pain, people are regularly prescribed up to 120mg codeine. Addicts that use codeine can take three times that amount. I realise I am a small person with a sensitive system and I’m not an addict, but 8mg? Really? If I’d had ANY idea this reaction was possible, I would have dealt with the pain. This wasn’t a little respiratory depression, this was serious. I also learned that the vast majority of patient-described “allergies” to opioids are reactions to the histamine released by the drug and not an actual life-threatening allergy. Why didn’t I know that codeine releases more histamine than other opioids? I don’t know. I should have. It probably would have stopped me from ever taking it again since I try to avoid histamine release in my body if at all possible.

The scary part in the literature is that they describe the non-allergic histamine-produced reaction as itching, flushing, hives etc. and they describe the true-allergy IgE-mediated reaction as “bronchospasm or respiratory distress, laryngeal edema, hypotension, and even acute vascular collapse.” ~ which can be life-threatening. So, that made me nervous since I was only experiencing respiratory distress (a more serious side effect) and a stuffy nose. But, honestly, I could see the ER doctors’ faces when I say, “I can’t breathe from 8mg of codeine and I’m afraid of dying.” Well, you can’t say the latter because you sound like a melodramatic, histrionic lady (who also happens to have that crazy made-up illness Chronic Fatigue Syndrome), but you can’t even tell them you are reacting to such a low dose of something because they’ll scoff and think you’re exaggerating.

So, I stayed put. I didn’t take an antihistamine because I didn’t want to depress my CNS any more and I didn’t take my inhaler because I have no idea if it would help and I didn’t want to get all shaky from the albuterol. I didn’t even take my supplements. I just drank water and waited. About 5 or 6 hours later, it started to ease up and, once my lungs opened again, it underscored just how tight they had been. It was like someone took the pillow off my face and loosened the very tight straps around my rib cage.

Now I wonder: was it a true allergy or a histamine reaction? It matters for the future. It matters if I’m ever in the hospital in dire need of painkillers. No NSAIDS and no morphine derivatives. And please no histamine-releasing anesthesia. What a nightmare.

To top it off, I had drenching, awful night sweats in my sleep afterwards. It was the first time since December 10th, which had been the first time in months before that. This morning, my chest is still tight ~ not quite back to normal yet. My eyes and fingers are swollen. I’m shaking like a leaf. It’s not normal and it’s so frustrating. It makes me nervous to try any drug ever again. Can’t take anything, can’t eat anything, can’t be in the sun, can’t be in the cold, can’t be around smoke, can’t be around noise… What’s next? Get rid of dogs, smells, colours, electricity? This is no way to live. Give me the puking reactions or the drowsiness or the rash or anything besides not being able to breathe. It’s the scariest feeling in the world and to all of you out there suffering lung disorders of one kind or another, I send my sympathy and compassion your way. Remember: As long as you are breathing, there is more right with you than wrong with you.