Another early morning trip to Lund, though to a different part of the university medical complex this time. ¯\_(ツ)_/¯ No sedation or invasive procedures this time, just getting my eyes peered into yet again and discussing the prospect of more in the near future.
Had just escaped here, and was feeling just about as pleased as I looked. Pretty sure that was an attempt at Neutral Face, btw.
On the plus side? This time we did only get to pay the standard 300kr/roughly $30 copay for the office visit, and not the 2000kr Special Foreign Devil Rate. They did apparently have my brand new personnummer set up in the system now, so all of this shit should be fully covered moving forward. (The High Cost Protection should have already MORE than kicked in from what we’ve paid already, so we might even get the 300kr refunded too? )
After getting checked out by two different eye surgery specialists (they only do actual surgery in Lund)–with the sinking feeling you might expect when the first one was obviously concerned enough at what she was seeing to call someone else in? Complete with another ultrasound, because that’s not worrying enough already?
Yep, looks like they were very likely wrong in Malmö last time. They want to do that damned vitrectomy, but are also not entirely sure what they will find in there once the blood is vacuumed out of the way. There may be a detached retina lurking back there too, after all. It may just be a glob of blood looking suspiciously like a detached bit of the retina. Didn’t exactly sound promising either way, as businesslike as they were about the whole mess.
(They also sounded pretty appalled that I didn’t get any laser treatments well before I did. That retina really was seriously fucked by the time they started trying to patch it together here. And I was glad enough to throw the damned NHS straight under the wheels of the bus they spent years building, if as diplomatically as I could manage.)
Oh yes, and I apparently also get a bonus lens implant while they’re in there! Because Haunted Eyeball’s latest spectacular tantrum apparently also fucked up the lens and caused a sudden cararact. Which might help explain the general level of blurriness behind the freaking swirly dark blood haze, yeah.
Again, on the plus side? No signs of glaucoma anywhere, at least. And they are apparently wanting to knock me the fuck out to do invasive things to my eyeball. They’re not sure exactly how long it will take, so want to just use general anesthesia–which they normally wouldn’t for a straightforward eyeball jelly scooping.
(OTOH, that evidently may mean a fight to get that done on a totally outpatient basis. But, it’s a massive HELL NO from me otherwise. Hard limit there, especially after that last time when I basically got held prisoner after inpatient surgery.)
At any rate, at least that bit of anticipation and dread is over. Even if the cataract came as a complete surprise. We do have a little better idea of what is happening, if not exactly when yet. They are hoping to get a slot opened up to bring me back to talk to an anesthesiologist in a couple of weeks, with surgery maybe a week after that.
So yeah, the apparent urgency doesn’t have me at all concerned, either. At least they are, indeed, going ahead and actually providing whatever treatment they are deeming fit–with actual informed consent. As on, they’re actually talking to me and not getting all pissy when I do have some questions. And I have not been lectured or snarked at one single time, about anything.
Can’t say I’m looking forward to any of what’s coming with this, other than getting it over with. Not much liking my chances of keeping anything like full vision in that eye, but here’s hoping we can indeed get at least enough back to let me drive again.
Being chronically ill and tiptoeing around in the waters of dating/apps and finding someone cute but then finding out they’re in the medical field
Dear gods, there was this nurse and he was an EYEFUL but he had a major dealbreaker for me but I did not know what to do with myself because I was seriously ready to say fuck it, HEAL ME!!
Disclaimer/Trigger Warning: I debated for a while whether I should post this as it is a bit raw, but I feel it’s important to share every aspect of living with this disease. Please feel free to skip this post if you’d rather not read it.
Those words have been spoken so many times to so many people. No one likes being in the hospital and it can be a frightening experience. But what about when you’re being told it for the third, fourth, fifth, eight, tenth time? Time seems to stop, and your stomach feels like it’s just dropped out. And then the negative thoughts about never getting better start up all over again. And your brain is there reminding you of all the previous times you’ve been in this exact situation. And you know the doctors and nurses are just trying to help you feel better but you can’t help but feel some minor resentment towards them and you can’t take it so you burst into tears, just wishing you could wake up from this nightmare!
That’s medical PTSD.
Post-Traumatic Stress Disorder is real and can happen to anyone. It should be talked about and acknowledged, regardless of your experience. And for a lot of chronically ill people, it centres on their condition/s.
My trauma stems from having been admitted to hospital ten times in just under four years and from having tried seven different medication, none of which worked to get me into remission. It comes from having had four surgeries in three years, two of which were emergencies to save my life.
Despite the nurses being incredible and amazing, despite the doctor’s efforts to help me, I still fear going into hospital because I know what happens when I do. IV fluids are the first thing to go up, usually followed by either antibiotics or steroids. This is to stabilise me whilst they decide the next cause of action. They do x-rays and CT scans to make sure I’m not obstructed and that my bowel hasn’t twisted as both have happened in the past. And depending on what the outcome is, sometimes they’ll insert an NG tube to drain my stomach, or perhaps a drain for an abscess. Sometimes, this will take a long time and I end up with a PICC line in my upper arm so they can give me TPN in place of food.
And sure, I’ve come out alive and mostly unscathed. I’m breathing and still able to move and work and take care of myself because of (or perhaps in spite of) what I’ve been through. But that doesn’t make it any easier.
People tell me I’m brave, but bravery implies there was a choice. I didn’t choose. I wasn’t asked. On life’s questionnaire I didn’t tick the box labelled “chronic illness”. That was something that was thrust upon me without my consent.
What I’m trying to say is that for me at least, hospitals are a source of endless trauma and fear, and even going in for a simple blood test or check-up puts me on edge.
I suppose I should say something positive about how I’ve got my family beside me keeping me grounded through all this. But the truth is, not even they know the full extent of how badly this has affected me. I’ve sought out therapy before and I dare say I’ll seek it out again before long.
I’m sorry there’s no happy ending to this article but thank you for reading if you’ve made it this far. And please know that whatever you’re going through, you’re not alone. Please stay safe.
