#despite the fact that i just had an appointment yesterday and they're switching me back to injections

[just-your-average-tangerine]

Is one day of peace too much to ask for? All signs point to yes.

[keratoconusgroup]

Some RGP Questions

Hi, I had some concerns regarding RGPs I was hoping you guys could help me out with. Background: I have somewhat severe astigmatism (-1.75 in both eyes), along with fairly bad myopia (-6 in my left, -2 or so in my right). Back in 2021/2022, I was experiencing ghosting (a "shadow" on bright text and the like, along with starbursts on lights) with my glasses, and went back-and-forth several times getting new pairs of glasses. Unfortunately, my issues weren't resolved. One optometrist suggested I might have keratoconus, so I went to my opthamologist, who said it didn't seem likely. He said to get RGP lenses, and I ended up ordering contact lenses from my optometrist (LensCrafters) but being unable to put them in despite several sessions. I gave up then, and continued dealing with the ghosting problems. I'm posting in this sub because many people here also have RGPs. Fast forward to October/November of this year, I decided to give contacts another chance. I was told to try soft contacts first, which I did, but I found that they rotated way too much, giving me blurry vision most of the time. I then ordered RGPs after that, which took about 3 weeks. My initial impressions were favorable, and it was surprisingly painless. However, I began noticing that my right lens wasn't nearly as clear as the left lens, despite my left lens having worse astigmatism and myopia. Left lens was quite stable and clear, and I liked it, but the right lens was being very problematic. It was inconsistent, and blurry even when it was stable. My doctor ordered a new right lens, tighter to account for edge lift, after giving me a fluorescein test. I switched back to glasses until the new lens arrived. After about 6 weeks, the new right lens came in (about a week ago). My doctor once again did the fluorescein test, and said the edge lift was better now. However, I'm still experiencing noticeably worse vision in my right eye compared to my left. It seems less stable, and less sharp when it's in place. My current guess based on what I'm experiencing is that it needs to be tighter to account for edge lift and I need a prescription update, whether it's myopia or astigmatism. I've been adapting well to them, but still have these issues. I've been able to wear them for like 8-9 hours max so far. Questions: Did I make a mistake by getting my lenses at LensCrafters? I believe my location has one other RGP patient, but overall, I doubt my doctors have a lot of experience with RGPs. To be clear, there's three different optometrists, but there's one who I've been seeing for my last few appointments. I guess he's the one who's the most experienced with RGPs. There's a private practice nearby, and online it says that the doctors are "experienced with contact lens and specialty contact lens fitting (RGPs, multifocals/bifocals and keratoconus)" so I wonder if I should go there instead. I asked my doctor about this, and he says he does in fact have experience with RGPs. Are my issues expected, and resolvable? A lot of the time, I can see the edges of my lenses, indicating that they're no longer in place properly. Additionally, they seem to slip a lot sometimes. I was able to wear them happily for most of the day yesterday, but today I've been noticing them slip a lot leading to ghosting and haloing. My right lens moreso than my left - there are times when I can see the whole periphery of the lens in my vision, and it becomes extremely blurry at times. I find myself blinking a lot to clear up my vision, rather than for pain. Am I cleaning them right? I was just given a small bottle of Boston Simplus and told to use it. So far I've been placing the lenses in the case with Simplus overnight. Also, if they fall or something, I put the lens in my palm with a few drops of solution and rub it to clean. I read somewhere that I need to use protein cleaner, but my doctor never mentioned this. Any general advice or experience? I guess I should now… https://www.reddit.com/r/Keratoconus/comments/18sgs4x/some_rgp_questions/?utm_source=dlvr.it&utm_medium=tumblr

[emcant]

Pigeon metaphor II

Big realization in therapy... I think. Prepare to be traumadumped.

At one of my first doctor's appointments after I moved out, they asked me how I was treating my asthma. I said ???? I don't have asthma. They said ???? yes you do, at least take a rescue inhaler. I did, and didn't really know what to do with it, but found it made climbing hills easier.

A decade and a daily prescription later, my boyfriend and I went on a hike with another friend in the parks service. I spent the entire time waiting for it to suck, knowing inherently that I hate hiking. It never did; it was, in fact, the best hike I've ever been on. Some weeks later, I realized that I was actually expecting to have trouble breathing. I was waiting to rotate between feeling winded, chemically burned, and as though I'd been stabbed... which sucks. Many of my friends have invited me on hikes over the years, and I've always turned them down. I texted all of them to apologize. I was mistaken: asthma sucks. Hiking is awesome.

One of the last conversations I had with my mother was after that first diagnosis. I asked her if she knew, and she confirmed that she found out when I was five, "but your dad didn't want an asthmatic child", and immediately changed the subject. First of all, my dad is more asthmatic than I am; I can see him saying not that verbatim, but something similar in the vein of "I wouldn't want my child to go through what I went through". Second, that's just too goddamn bad: he got one. They both did. I think there was an implied "and that's why he left" in there, which is hilarious in its own way. She was the one to move out of state, and thought I'd buy that at 20.

My mother doesn't like children. They're generally too loud for her, and she raised me more like a doll instead: virtually never heard and only seen on her terms. She kept me out of sports and blamed the expense, and would bark at me if she ever caught me running, skipping, jumping rope, etc. I used to assume that those were all too noisy, but now I'm thinking she was keeping me from overexerting myself into an asthma attack. She didn't have to worry too much. Until that rescue inhaler, I was unable to take more than ten running steps without feeling like my insides had been dipped in chlorine. I assumed that this was normal, and that something was wrong with me for being unable to work through it.

I have no idea why my dad and stepmom also seemed to believe this at face value, with my mother already having a track record of medical neglect. Middle school was a particular kind of hell for me because the presidential fitness tests came around, along with the mile run that I didn't know was actively endangering me. Naturally I failed it a lot but eventually managed to pass despite the searing pain through my chest, generally needing to lie down for ages afterward to fully regain my breath. My dad and stepmom were proud to "finally" see me getting active. (Every time I tell this story in real life, I catch myself raising my voice right about here.)

Point being, I think my mom's position was to keep me in the dark about things that would hurt me... but hurt is inevitable. If I came to her injured in some way, she'd punish me, frustrated, I think, that I made her look bad. If you didn't know what fire was, of course you'd want to touch it, and she resented having to treat me for burns after switching to a fully electric kitchen, if you will. But life demands that adults learn to feed themselves, and hot food satisfies like nothing else.

Anyway, the pigeon. We hadn't seen it for about a month. My boss has had something similar happen before: occasionally, he says, they decide that a building is theirs now. It came in three times in two days last month and made its triumphant return yesterday. No one saw it get in, but I was the one to get it back out, again.

Picture me on top of a ladder trying to corner a frightened bird with a broom on one side and a shopping basket on the other, thinking pretty extensively about whether I could rescue it instead. Suppose I brought it home and released it here? Seven miles away, next to a different shopping center with all the trash it could eat. Maybe it would be disoriented for a while, but surely it couldn't be worse than the sporadic bouts of head trauma from flying squarely at the store windows. Best of all, I'd be assured that animal control wouldn't hurt it, which is my biggest concern.

Boyfriend said that would be sort of cruel: that seven mile trip would be pretty awful for it. I said surely it wouldn't know the difference? - and felt a chill up my spine.

I've handled this bird more than once now, and can recognize it at a fair distance. (Its wings have a pretty even black/white feather distribution, except for a big black spot on the right.) Today it was hanging out across the street from the store with five or six friends, feathers all cleaned up after the mess it made of them yesterday. Seeing it in a new environment felt great. It doesn't do so well alone, and has a particularly bad time when it feels trapped, but it blends in seamlessly, painlessly, among its peers.

That's all that any of us could hope for, I think.

[healthishealth]

I made it outside yesterday (recovery day 6). I'm so thankful that I have a balcony to sit on and feel the fresh air and warmth of the sun. Unfortunately, my apt is not accessible and has tons of stairs, so I've been trapped here since my surgery on Friday.

I had an L4/L5 and L5/S1 laminotomy. When the surgeon opened me up, he confirmed that I actually have a duplicate nerve root at L5/S1, not a cyst. He took a picture (those of you who know me should know that made me really happy) and he's going to show me how much bigger that nerve root is since it has two nerves wrapped in one sheath! He also confirmed his suspicion that my nerve roots exit the spinal canal much higher than the average person. This, he said, would explain why my pain did not match what he was seeing on my images - a validating statement that reminded me I wasn't making this all up in my head.

For years (8 to be exact), I have suffered from sciatica. It was really bad at first and then I don't know if I "got used to it" or perhaps it got slightly more tolerable, but it was only this past year that it became unbearable again. Every time I would see a doctor, they would look at my imaging and tell me that the minimal disc bulges I had on those two levels should not be causing me so much pain. In fact, one of my doctors suggested it could be psychosomatic and asked if I knew about CBT (I work in mental health, so this was a huge 🙄 for me).

Nevertheless, I refused to give up, even though my doctors were giving up on me. I finally found a pain management doctor who believed me and also wasn't afraid to prescribe pain medicine while I sought answers. After exhausting my options with him (i.e., steroid injections, exercises, medications, etc.), he referred me to a neurosurgeon. I'm too exhausted to go into detail about the horrific experience I had with this doctor, but I will one day. She eventually suggested I have a fusion and disc replacement (without ever seeing me in person except for 2 visits in 2016). I felt this was pretty aggressive for someone my age, so my pain management doctor referred me to see someone else.

For the first time, this new surgeon listened to what I was saying and actually believed that I could be in a ton of pain despite my images only showing "minimal disc bulging" at 2 levels. He showed me my scans and actually walked me through his thought process. He pointed out the "cyst" and said he thinks it could be a duplicate nerve root. He also drew pictures for me, explaining how nerve roots normally exit the spine and how mine seem to be exiting much higher up. He pointed to some bone erosion he noticed on the right side and suggested I get new imaging done since the last one wasn't very clear. Most importantly, he was straightforward with me and said this surgery might not fix my pain, but at the very least, we would eliminate one of the possible sources for my pain. The worst case scenario (barring any rare complications from surgery) would be going through surgery and not having my pain resolved. He also referred me to see his colleague for one more opinion, since his opinion conflicted with the first surgeon I "saw."

Fast forward to my surgery day - I'm pretty nervous, but once I meet my anesthesiologist, I'm much more at ease. He's a huge USC fan and alumni. The doctorate student (SRNA) working with him that day was also at USC, so we all bonded over that and I felt reassured that they would take good care of me. Both of them kept telling me what a great decision I made and that the extra year of PA school at USC's program is so worth it (woo!). Next, my surgeon came and marked "YES" on the right side of my back and they told me I was ready to go. I kissed Alex and my mom and the SRNA gave me a dose of propofol as I was being wheeled away.

Things happen at double speed once you enter the OR. EKG stickers get placed on me as an oxygen mask is strapped over my face. My gown is hooked up to a hot air pump (my favorite) and the anesthesiologist tells me he's going to start giving me the sleepy stuff. My left arm burns like my veins are on fire. I'm reassured this will pass quickly and it does. Someone stands over me and switches my oxygen mask and I drift off into anesthesia land.

My eyes peel open and they feel watery. Am I crying? I am. I hear myself gasping for air and saying, "I can't breathe!" Looking back on this, I think they probably had just pulled the intubation tube out, so I probably woke up during that and got scared that I wasn't breathing on my own. This has never happened to me before (or if it has, I don't remember). I then burst into tears again because the sciatica I had going into surgery was gone.

I'm still off of my medication for my autoinflammatory disease due to the risk of infection if I'm immunocompromised in any way. My drenching night sweats are back and I'm not feeling that great, so hopefully I can go back on medication after my post-op appointment on 3/17. In the meantime, I'll just be here...resting...reminding myself I'm not a burden...allowing myself to ask for help when I need it. Special shout-out to my mom for flying out last weekend and taking care of me and my MVP, Alex, for being the actual best human in the world and loving me unconditionally.

It's been a long week. I've made a lot of progress, but I've definitely had setbacks (both mentally and physically). My sciatica came back a bit a few days after surgery, but has not been as painful as before. I'm hoping my nerves just need some time to settle down and realize they're not being compressed anymore. I do worry that 8 years was too long and that permanent nerve damage was done, but I'm just letting that thought hang out and I'm trying not to engage with it too much.