#and I'm just like. but my sciatica. does no one care. about my sciatica.

[mod2amaryllis]

I'm glad it's been a relatively uncomplicated pregnancy but that means i was not prepared for the home stretch misery. like girl! my sciatica!!!

[bomberqueen17]

WWII museum

So, New Orleans-ing proceeds apace. Tried to go to the Southern Food museum, the website said it was open, the door said it was closed. This was a rather crushing blow as I'd walked about as far as I could walk to get there, and then had to turn around and come back. Don't think I'll be able to try again.

My sciatic nerve has had it with me, and I'm able to get around during the days but it's just hurting so badly at night I sleep in five-minute increments, then have to wake and roll over, and if I'm lucky I can fall back asleep before it hurts too much for me to sleep through it, and if I'm unlucky I lie there until i can't stand it and get up and stretch and try a new position. So that's not great. Stretching stops it from hurting while I am actively stretching, but does not particularly help if i assume literally any other position. No, I cannot sleep in the stretching position. I've tried. I can't even sit in that position, so it's not a very useful method of relief.

Ibuprofen doesn't touch it and neither does Aleve. Those are the only options I have with me, so.

Anyway. I'm getting around fine but really not getting a lot of rest.

Last night we went to a show at Preservation Hall, and they charge literally double for your ticket if you want to sit on the hard wooden benches, and I weighed the odds and the bench was likely to give me sciatica anyway, so I stood and saved myself $25, but it was agony and I paid the price. So today we went to the National WWII Museum, and I asked at the admission desk if they had loaner wheelchairs, and they do.

I have learned that nobody cares why you're in the wheelchair. They have many, you are not snatching it away from someone who needs it more.

It is its own punishment, however. The pathways are marked at the stairs; if you go find the elevator, you then have to wander around trying to find where you're meant to go next. People don't get out of your way and you spend a lot of time staring at the asses of people who don't care that you're there and can't get through and can't see anything. One woman, we asked politely if we could get through, and she made no attempt to move, so we squeezed by, and clipped her foot with our wheel, and she got very angry with us. There was no one close to her, she easily could have shifted her foot, she could both see and hear us. We could not have gone any other route, she just didn't think we had a right to pass.

And some sections of the museum have artfully-designed floors that are rough, with chunks of fake-broken concrete. These are really punishing to try and roll over, and are wildly uncomfortable to bounce along over. Especially in a crowd of people. I understand the aesthetic choice but with the number of visitors with mobility impairments for whom that provides a tripping hazard, I super super wonder what the fuck they were thinking. I saw several elderly folks with rollators and I don't know how they got through those rooms. It was several of them.

One whole section, we could not get to unless we went back through the crowded exhibit to the halfway point to find the elevator again.

As far as the content.... I studied that era extensively in my youth, Dad was obsessed with military history and had a lot of books in the house, and I read several of them cover to cover and back and forwards. One in particular-- my sixth grade social studies teacher was obsessed with the Pacific war in specific, and during the year I was there, he was engaged in hand-painting a huge mural of the Pacific battles on a map on the classroom wall. I was allowed to help stencil on some of the letters. So I found that I knew most of the general conduct of that war, and the book I had obsessed over in specific was a compilation of primary sources, news articles, contemporary firsthand accounts, of many of the major actions of that war. I was astonished at how much I remembered. I also had read a very detailed account of D-Day, similarly, so I was able to rattle off an overview of the thing to Dude while we were staring at a line of people's asses who wouldn't let us through.

As we went through the Pacific wing, in the background there was this weird repeating bit of ambient music that I actually recognized as Brian Eno's An Ending (Ascent), and I was like fuck, I bet I know what that is, and I was horrifyingly correct: that's the room where there's a huge wall-sized enlargement of the devastation at ground zero of Nagasaki, a couple of little things along one wall explaining what happened, and nothing else, it's just this big huge space and the music.

I guess it's tasteful, I guess going into more detail wouldn't help, I guess that's not the place for it; leaving it a big bleak horror serves the purpose and tone. The museum was generally pretty good-- very, very American-centric, but acknowledging various issues of racism and misconduct and propaganda and such in sort of minimal but very present ways. There were repeated mentions of the segregated US armed forces, repeated discussions of what the Black soldiers still managed to achieve, and it especially hit because the group that was the most polite and considerate of my wheelchair was a school group of almost entirely Black high school kids from, clearly, a local-ish school, who were impeccably-behaved despite being kids and horsing around and such-- I timidly said "excuse me" to one and she leapt out of my way and tapped her friend's shoulder, who instantly stopped horsing around and said "oh excuse me!" and also got out of my way and told her friend and the children just all melted out of my path and reformed after me, unbothered, resuming their horseplay, poking at the interactive exhibits, paying surprisingly good attention and also roasting one another, as young teens do. And I thought, as I went on to read about Executive Order 8802, of these kids reading that placard, looking at that exhibit, thinking about what has changed and what, horribly, has not.

(Link is to the museum's website. There are a lot of resources there. There was meant to be a cool feature where you follow a specific veteran's story, but i was assigned Bob Hope and don't care about him so I didn't use that feature. Dude got Robert Capa, though, and I immediately was like "i know all about him" and from across the room was like "that photo on that wall is from your dude" and he was like "what" LOL. I know photographers ok.)

We lasted about five hours. We did not see as much of the museum as I would have on foot. But I also know even just the line to get in would have utterly destroyed me on foot. So we made it through to V-E day and then to V-J day and I sat in that room with the Brian Eno loop and was like You know what, I'm good. I'm good. I can't do any more.

So we went and got frozen margaritas at a fast food joint down the street and now I am recuperating. My sciatic nerve is not great, it won't let me nap either, but I will be able to walk and get dinner, which I wouldn't be if I'd done that museum on foot.

I highly recommend, even if you're mostly in good shape, if you have trouble making it through a museum and get footsore, just borrow a wheelchair, and then switch who's pushing halfway thru the museum. If it's that or cut the visit short.... We did not switch pushers, but Dude found a great deal of relief by leaning on the back of it, and I was able to carry the water bottles without much trouble.

Most museums don't have decoratively-uneven concrete floors.

I did realize, despite my obsessive reading on the topic as a kid, while I know the names of most of the German high command, i could not tell you the names of really any of the Japanese officers of similar rank. I recognized a few, from the placards, but generally I don't have the same level of knowledge there. On the one hand, I feel i should read more Japanese history of the war. On the other hand.... I think my days of being able to absorb that sort of thing might be over. Fourteen-year-old me would have loved this museum and read every placard, and would have been on foot to do it. Forty-whatever I am year old me was interested but horrified, even though I generally knew most of it already. But hearing about the estimated 100,000 Filipino civilians massacred in Manila during the battle for that city meant one thing when I was 14, and now means... well, rather a lot more, I have more context and I can really understand, now, what that means. It wasn't that i didn't understand as a kid. But I had no context.

Well, we'll see if I manage to scrape together enough brainpower to look into it any further. At any rate, the museum is worth a visit but is A Lot. Very American-Centric, but not as Patriotic as I was worrying. Not as obsessed with Big Machine Phallic Symbol as I was worried, either; it's not that there's none of that but it's largely in the context of discussing how US industrial capacity rapidly switched over to manufacturing war materiel. (Frank admissions in several cases that our stuff was inferior quality/design to both German and Japanese items, but was infinitely more numerous and in several cases it was simply that intelligent users worked out ways to use the items' defects to advantage, or to minimize their disadvantages anyway.)

And the website, linked to above, is pretty informative, with a wealth of images and citations. So there's that.

IDK, I have no like overarching message here, the bit of my sciatic nerve just inside my knee is fucking killing me and i can't think clearly about anything else for a bit, so. There's that, lol.

[elskamo]

More Shitty Life Updates

TLDR for those who wanna know but don't wanna read the whole thing: Mum forced me to reveal trauma that I wasn't ready to share, followed by getting Sciatica then being made redundant the next day. In pain, need money, you know where this is going.

The whole thing: I've been struggling a bit (okay, a lot) more than usual over the past week or so, yet again I've had quite a few negative life events one after the other. I am in the process of getting help for everything happening right now, I'm doing all I can to take care of both my mental and physical health.

Last Monday Mum realised my mental health has been getting worse again and refused to leave me alone until I told her what was going on. She kept badgering me for information and making up random accusations about what could have happened. She also kept sneaking into my old bedroom and looking through my belongings to try and find... fuck knows what honestly.

I've recently started delving into a past trauma with my counsellor that I'm not ready to share yet with anyone, let alone my mum, I will not be elaborating on it any further than this. Eventually it got to the point where I was forced to tell her, she cycled between being disgusted, accusing me of making things up, getting mad at me, and attempting to be supportive for a couple days. Frankly I feel violated as hell and it made my mental health nosedive even further.

By Wednesday morning I suddenly started getting shooting pains from my lower back going all the way down my right leg. It got to the point where I collapsed from the pain and had to be sent home from the office early. It took hours getting bounced back and forth between 111, the GP surgery, and out of hours care. Eventually they diagnosed me with Sciatica and managed to arrange for me to pick up some prescription painkillers the next day. The pain is nowhere near as bad as it was last week but I'm struggling to walk because of it and I haven't been outside in days.

The nail in the coffin came on Thursday morning when one of my bosses called to check up on me. He let me know that at the start of the week three of the staff had a meeting where they agreed that when my probation period finished at the end of October they were gonna let me go because they've decided my position at the company isn't what they need right now. Since I had to go off sick from the Sciatica they said they'd instead just make me redundant now.

It really came out of the blue, especially as I've been uncovering a lot of marketing, commerce, and general technical issues since I've been employed there and there's definitely no shortage of work for me to do. My mum is convinced they're lying and don't want me because of my health issues but there's no way of proving that. It does mean that I'm unemployed again and need to go through a few meetings with Universal Credit who will want me to get a new job ASAP regardless of my health.

So yeah, right now I feel like garbage. I've got help from one of my friends to sort out the UC stuff, particularly with proving my health issues. I'm still waiting to find out what I'm getting paid for work this month, since the phone call last Thursday no one has reached out to me to discuss pay or handing over tasks or logins. When the Sciatica isn't affecting my mobility anymore I'll be able to start reaching out to my contacts again and get help with job hunting and networking.

As usual all this means I'll probably be cycling between being ghostly silent or desperately looking for comfort content. Hopefully it's not gonna take another half a year to find a new job but if anyone is able to please donate on Ko-Fi or buy something off Redbubble or Ebay (the latter is UK only right now). Etsy is still pretty barren as things got kinda manic while I was setting it up but it should be properly up and running soon now I have a lot of time to spare again. I feel crappy to have to keep doing this but please do help if you're able to!

[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.

[weabbynormalblog]

Keep strong...

I've had this message on my board all week. So I must of looked at it more than a dozen times since then. What does it mean, what am I trying to say? I stare at it, percrasting not putting laundry away, but washing the floor instead. I struggled with it, the grammar and text of the sign. Should it "be strong" or "stay strong"? Why did I decided in "keep strong" versus "be strong"? Strong can refer to physical and mental strength. Staying with the program that's the "keep" part and the "strong" part is not giving it up for good.

At my worst, it was tempting to end it all. I also wrestle with cutting behavior and body numbness. It isn't easy being me. I know I can change and heal; I've done it before. I am strong. I overcame my dyslexia by the time I was 25. I have over came back injuries, 4 times now in my life and still healing from the last time. I was in a wheel chair for a year due to a frozen sciatica. Ive had successful shoulder surgery too. I gave up smoking over 20 some odd years now. I've survived and recovered from a nasty divorce, lost business and financial ruin. I've also lost 200lbs and avoided diabeties. I thought I had seen it and done it all.

Now I'm a brain injury survivor with chronic pain and fatigue. I'll get through this and so will you!

Can you keep strong and have the ability to ask for help when needed? If you're an over achiever like myself, your pride takes a bit of a dip in having to ask. I know, it's hard to be the one needing help. Especially if it was the other way around before. Now it's time to get past it! It's ok that we need help with some tasks, and that there are things we don't know how to communicate. Then there's things that I can do that others can't. One of my best gifts is my creativity. I can make something out of nothing. Whatever a sweater boom there it is, a minion pinayta for a party, a desk organizer, a bird feeder; some people can't even visualize it, never mind create it. Even Greta Nuremburg speaks of her handicap as a gift. It let her cut through the bullshit to form a direct line to help climate change. There's a certain stubbornness that seems to develop with learning disabilities/brain injury/mental illness etc. For me I'm sure its a coping mechanism. Its my brain working out how to make sense out of all this data. It gets overloaded at the strangest times, it seems. Still lots of mystery in my head. As a person that has difficulties decoding, speaking and hearing, sometimes adapting means putting myself in the middle of everything. I need to arrange things so that I can understand and communicate better, which isn't always possible. I'm fortunate to have a person to help when I need to get groceries or run errans. I'm still too limited with my mobility to drive most days. For everything else I do more with less. I can't hear on the phone. Add accents of any kind to conversations like West Indian, British, French or German... It's the worst for me and then we play a game show called What did you say? I'll take M as in Michael please. I dont do phone calls on days that I'm not up to the task. Forget everything if I have a migraine or my pain is past 6 and I had a rough night. Phone calls, get them out and done first thing in the am. I don't play telephone tag either. When leaving a message state a day and time that works better for them to reach you. I do everything I can possibly do with text messages and email. I process information best like this, the written word. Yeah, I'm not much of a conversationalist these days in person, unless its 1 on 1 or maybe you need a monologue or speech delivered? While writing offers some communication relief theres still grammar errors and spelling mistakes, but more or less writing is stress free for me, even enjoyable opposed to trying to follow a conversation between 3 or 4 people and remember names.

On bad brain days all my disabilities can be too much; then with the chronic pain and fatigue on top of that? Just kill me now? Or maybe now? Screw going anywhere! Ever! It's a head in a jar rough day, my body doesn't respond well to anything. Walking and talking is over ratted at this point; all I can do is rest. I feel defeated by my own body. See you have to "Keep Strong" even when your body can't. So no deal, less urgent tasks fall to the wayside. Sorry I got to bail out on that date again. In the moment I just want to give way, let it all go and become a gelatinous mass that can ooze up and down the stairway, absorb nutrients by oozing on them and Ah...don't move just emit blob like behavior.

Recently I joined the local Chronic pain and fatigue organization, there is no brain rehabilitation in my area, so much for Medicare. I'm so grateful that this .org exists. It's great when I can get out to the activities. The Yoga, it was great! Low impact just what I needed. I was in bed for 2 days after that. This Thursday Yoga came and went with my sadness. I did my at home version instead. Today again is not one of those going out days. That's perfectly fine with me. I know when I'm not good with other people or getting around. There's no point in being angry, tired, frustrated and in pain.

So when faced with "keep strong" laying in my bed. I know that caring for myself is not giving in to limitating beliefs but allowing myself to becoming stronger in the long term by understanding and treating my physical limitations today instead of making like the other regular sheep. I still meet my short term goals on stretching, hydrating and eating well. The basic chores still gets done. You need to remind your self that resting is a part of the healing process. This part is about concentrating on my health and supporting my own recovery. No one can do that for you. Understanding our limitations is not a weakness! Adaptation by trial and error. What works, what doesn't and concentrate on what does work for you. Forgive yourself for not being up to task. I know it's hard to believe that it's is a gift. It is a strength and a gift to be able to face the tough stuff. We get to see the world we live in another way opposed to those entrenched in the rat race. It's not about fitting in society. It's about taking your space, finding your power and place; just as you are. I no longer feel that I'm missing out in life. I'm working on healing myself. I haven't lost the war, I'm just taking a breather. So go on ahead, I'll catch up eventually. This dang boulder won't stop rolling down the hill. Hold on, I'll go get another boulder to stop this one...