How I loathe thee, self-checkout. #lupus

I don’t know if this is a growing trend everywhere, or just in California, but there are more and more self-checkout registers at grocery stores every year.

This is a lose-lose situation. I don’t see how the self-checkout could be a win for anyone, except for maybe the store since they don’t have to pay a cashier or a bagger. The damn things never work the way they are supposed to. I can’t ever remember a time where I didn’t need to track down a missing employee to come over and unfuck my register.

My first problem with this invention is that they are taking away the jobs of the cashier and the bagger, and replacing them with one overseer that can never be found when you need assistance.

Then we hear more GET A JOB, LAZY LIBERALS.

My second problem is that I am a disabled person, and I’m mostly disabled by pain. There are people who are a lot more disabled than I am trying to do their shopping, sometimes by themselves. There are also elderly people still trying to remain as independent as possible. As if shopping in itself wasn’t enough of a burden, now you have to ring up and bag everything, too. And you have to do it just so, or else the computer will bingbong like a nuclear reactor.

Self-checkout easily takes twice as long as cashier-aided checkout. First, you have to ‘sign in’ on the register with your super-awesome-best-friends-save-money-but-not-really club card. Then, you have to ring up and bag everything one at a time, because it weighs your groceries to make sure you’re not doing an item switcheroo to get Fillet Mignon for 99 cents. A lot of the time, it doesn’t detect the item in the bag, and the computer has a fit. Every item has a bar code in a secret place, so each item becomes a game of “Where’s Waldo, the black-and-white-stripe edition” unto itself. When you do find the bar code, hopefully you can mathematically predict the angle to which you must hold the bar code up to the scanner for it to scan successfully. Once the register *boops*, you celebrate a little on the inside, although you are not a winner quite yet. The item must either go directly into a bag and have the weight detected by the bag-weigher-thing, or down the conveyor belt, which also incorrectly weighs things, and also becomes clogged with items because you do not have another set of arms for removing and bagging. When you stop ringing up to unclog the conveyor belt, the computer repeatedly asks if you “wish to continue with your purchase”.  Dog forbid you purchase a much-needed alcoholic beverage after being the register’s bitch for 20 minutes, because then you have to track down the overseer to look at your driver license. After they tell me how young I look (23), if you “have any coupons today” you have to pick the special coupon square on the screen, and maybe it will scan, maybe it won’t. Then you’ll just decide it’s not worth the 74 cents you’d be saving if only you’d properly aroused the register.

Shopping in itself takes a lot of my energy. Being on my feet for even 30 minutes causes the pain to start, and I’m usually in the store longer than that. I have to read labels of the things I buy to check for ingredients to which I have an allergy. The ingredients I’m sensitive to are in a lot of foods, and sometimes it takes a while to find things I can eat. I do get help shopping, but if I did not get help, and I had to lovingly stroke the self-checkout by myself, I don’t know how I would do it. Sometimes, by the end of a long shopping trip, I just can’t stand up anymore. I get hot, nauseated, tired, and the pain just gets unbearable. It makes me dizzy. Sometimes when I get an ‘attack’ like this, I can’t think straight. I start to forget why I went down an aisle, what I was looking for, or the name of something I’m looking for. I fumble with words and the clear thinking I walked in with is gone. Once I sit down, I start to feel a little better. The nausea and dizziness go away, but unfortunately the pain stays. I don’t know how I would ring up and bag my own groceries when I feel this way by the end of shopping.

Why don’t I use a scooter cart? Because if I stop depending on my muscles to hold me up all the time, they won’t be able to. I fight the fatigue and the pain to keep them working. If I don’t force myself to do certain activities, I will eventually lose the ability.

Another problem the self-checkout causes are the lengths of the lines at cashier-aided checkout. No one wants to use self-checkout because it’s such an imposition to the customer. So when I need the aide of a cashier I have to wait longer, thus causing more standing, and more pain.

There are a few stores here that solely utilize self-checkout, and I try to avoid them whenever possible.

Whether or not people realize it, cashiers and baggers have a really important job. They really help people like me.

progress? Fuck if I know. #lupus

I have a massive headache right now. I’ve dealt with these headaches for so long that I’ve figured out how to still mostly function while having one. None of my medicines touch it. Ever. When I feel one coming on I know I’m fucked for at least 12 hours straight, usually more like 16. Then, I might get a break for 8ish hours, then I get another one. This goes on for about 3-5 days. I’ve been meaning to write lately, because some things have gone on, so here is the short-and-sweet version.

The local neurologist that ran my EMG/nerve conduction, sleep apnea study, skin-nerve biopsy, and test for Sjogren’s said everything is normal. Womp womp. Might seem weird, but I hate it when tests come back normal. I wanna know what the fuck is wrong with me.

I had this month’s Benlysta. Usual shit. Although, strangely enough when I got home I suddenly felt pain-free. Didn’t last more than a few hours. It made me cry, though. I haven’t been completely pain-free in a long, long time. It was hard for me to enjoy it because I was so worried about not knowing how long it would last. I think maybe it was just a coincidence, because I haven’t felt any relief since that small window.

I went to see another neuro closer to Los Angeles, he was recommended to me by more than one doctor, and when I got there, I realized why. He knew so much about Lupus, and even Addison’s, which really suprised me. I’m not used to people, even doctors, knowing about Addison’s. He even told me a story about how he helped someone he knows to get diagnosed.

He took a life-long medical history, and came to the conclusion that I could have Lupus Vasculitis. He ordered a Spect scan to check for cerebral vasculitis, which he thinks is the cause of my massive headaches. I’m hoping to get it done sometime this week, especially since this is headache week for me.

He did a full neurological exam and I again passed with flying colors. This has alleviated the worries I’ve had about possibly having Multiple Sclerosis. Vasculitis can sometimes present symptoms that seem like MS.

He told me to try butterbur for my headaches. I haven’t bought it yet, but I’ll write about it when I do. He says it’s fairly benign and doesn’t interact with anything.

He told me the nerve tests I had at the other neuro were basically useless. He thinks everything I deal with is the Lupus.

We talked about Chiari Malformation, and he reiterated what I had been told by the Chiari specialist. Even though my cerebellum dips a little below the foramen magnum, it’s not chiari. It’s just cerebellar ectopia, which doesn’t actually pose a problem, it’s just a trait of my particular brain and skull. There is no blockage, my brainstem isn’t being squashed, and my brain isn’t “malformed”. Since hearing this explanation again and a little more thoroughly this time, I’m gonna go with it. I’m glad I didn’t go and have brain surgery for no damn reason. Radiologists I guess tend to just say it’s chiari when they see low cerebellar tonsils. Believing I’ve had this problem has been absolute hell and I’m ready to take it off the table. The symptoms I have that I thought were because of it can be explained by other things. Other patients have told me that low tonsils means chiari but it seems like there have been medical findings among specialists that it’s not always the case, and it’s just not widely known by doctors yet.

I still have crap going on in the cerebellar area though. He thinks I may have vasculitis in that area, and it would make sense to me. If this is the case, no more benlysta for me. I have to switch to Rituxan. Rituxan sounds scary but I feel so horrible, and the benlysta hasn’t done a whole lot in helping me feel better. My blood work is decent, but what good is that when I feel so horrible all the time? If vasculitis and Rituxan are the answers to all of it, I’m more than ready to accept it and make the switch. I can’t keep going on in the amount of pain I’m in all the time. I’m hoping I’m on my way to figuring this thing out.