An Update 10/5/2021

So a lot of things tend to happen with us just in a one-week time span. Since our last update, of course, a lot has happened that would leave anyone exhausted.

I'm not sure how far back I should go, but I will cover just the past few months and a few things we experienced. So starting in September we had finally finished the janitorial job that we worked on both July and August. This job was actually more expensive for us to have than us being unemployed. How? Let me break it down:

1. We had to spend more money on gas. Our car is only supposed to be about $20 per tank that we fill once every other week at least. Gas prices are now close to $50 per stop and almost once a week.

2. More wear and tear on the car since the location is a bit far from where we live. They were trying to get us to a location closer but it had been filled the day of our interview.

3. We had to shower every day after work. Working with tons of strong chemicals and being around nasty warehouse workers meant we absolutely had to wash thoroughly every day. Scrubbing toilets and dealing with their trash made our skin crawl. Mostly because the workers there were not familiar with basic hygiene. It's also seemed true there that the white-collared workers would always wash their hands after using the restroom but the welders didn't. We counted 4 out of 5 just walking out without washing during our short shift. A lot of other disgusting funds but I'll save you from them.

4. We would always be too tired to clean our own home. With Applesauce, she increased the cleaning amount by more than double what I used to do before. I have to keep this up since it is vital to keeping her health up and in the long run, our health. I also get really stressed when I don't have things cleaned to a certain standard.

5. We had to do laundry more often to clean clothes and our towels daily. Sometimes our cats like to sit in our clothes but we couldn't risk that with the chemicals all over our pants and shirts. So we had to clean them immediately after work.

6. We ate out more, not having the energy to make food. Either the energy for the day was invested in cleaning the dishes or cooking food. But our shift would be done around 8pm with us being home and showered by 9pm. How could we cook a meal? We did do quick meals often, but it gets to you after a while and since we already have trouble with eating properly, we HAD to have a meal that covered at least half of our needed nutrition. Taste is also important since our hunger can quickly change to revulsion and the urge to vomit. So we would swing by a fast food restaurant (or our fave Thai restaurant) which gets costly. Though we may have only eaten out two or three times a week...that still adds up. Especially with all the other costs.

7. We were always quite stressed. Well more me as I hate sitting around waiting to go somewhere later in the day. I get worried about overly focusing on information and then getting really upset/unsettled when I have to stop for an appointment. I tend to lose time and it stresses me to be late for anything. So we ended up not eating much and had to try to force ourselves to eat something before work. Rarely could we so we were ok with splurging a bit when eating out so we would have some kind of decent meal.

8. We were always stressed if we were going to get the supplies we needed to do our jobs. We would let our supervisor know what items we needed (And asked a week in advance), sometimes it took two weeks after we asked just to get them in. And after we had asked multiple times if the items were on their way. The supplier would lie frequently saying it came in and he didn't even order it yet. We weren't going to clean anything without gloves. Or we would need paper towels to clean since fabric reusable towels wouldn't work against scrubbing poop off toilet bowls. (She said she would clean the towels once a week but wouldn't. They sat there dirty as the new person took over).

9. The supply guy seemed to have it out for us. Lying to our supervisor about us on day ONE. When our supervisor was having us do a walkthrough on what was to be done, she noticed one of the soap dispensers was leaking (the area around the sink and part of the floor was soaked). So she had a chance to explain how to fill and fix what was going on. Or how to record the issue and send it to her. He later had bitched to her that we messed up filling that dispenser and we didn't know the difference between the foaming soap and foaming hand sanitizer. Our boss knew we knew...since the next day we had organized the whole closet and properly separated them. This wasn't the first incident where he made something up and told the supervisor where she could just swing by the business and check out for herself. This was stressful as we just wanted the supplies for us to do our job. He complained we didn't fill a soap dispenser when it had emptied that MORNING and we were to come in that evening. The night before when we were in, it wasn't empty. We never spoke to him except "thanks" when he handed me four boxes of gloves. Actually saw him for about 2 minutes total the whole two months working there....so why the anger against us?

10. I had a lot of physical pain from pre-scoliosis and 4 herniated discs. I later found out I also have 4 disc bulges in my upper spine too. So a lot of pain and I struggled to keep up with work. But I got some good exercise and I think I helped my back a little. They required so much to be done a day that we had to minimize the amount that was actually doable without spending 4hrs every day there. Boss lady kept saying it would all take about 2-2.5hrs but would not be possible with the amount she wanted to be done.

11. As the job went on, more people were hired and more people stayed late, interfering with our cleaning pattern. As Autistics, we need to have a consistent pattern and we were told we weren't going to be working around a lot of people. (It was true for the first month we worked there) Some offices we couldn't clean because they stayed late to work. Almost every day we would have to change our patterns and this would make us miss things or have more mistakes. Also frustrating since we take pride in our work.

12. At home, we would also have a lot more trash to take out. We were trying to keep up with some recycling methods but it ended up being more stressful. We don't have a lot of room in our small apartment so there was some cost/benefit analysis needing to be done. It was better to just throw things out than try and work with it. Also with eating out more often... resulted in almost a bag of trash every day to every other day.

Since then we have been technically "unemployed". Though we have picked up some side jobs here and there to make ends meet. Doing side jobs like helping with parking at events just once a week is enough. We actually save money when we don't leave the house, we eat better, we sleep better, our cats are less stressed, there is less mess ( I can clean more often) and we can work on our projects. Except with my back pain, I am much more limited on what I can do for work until my back recovers. We were doing some gardening work for a bit but that was just too painful. John has actually been forcing me to not do much...which is excruciatingly boring and annoying. He is willing to do the physical heavy work but with my communication issues...it's always just easier for me to do it myself. I don't like relying on others to do my work.

A few weeks ago we had a disability discrimination incident. John and I have medical conditions that make it impossible for us to wear masks. With a recent dose of PTSD from an incident last year, it has escalated. It's not just uncomfortable, it is highly stressful and sickening. On the Autistic side, If I feel any heat on my face I stress and anxiety kicks up. Even a few strands on the back of my head after putting my hair up gets very distressing. I can FEEL the heat. I've had trouble sleeping on pillows because I can feel the heat on parts of my face. This is just one of the many issues that make wearing masks difficult.

We made an appointment almost two months ago and finally got in. Checked in, got John's vitals taken, and sat in the room waiting for the doctor. The doctor wouldn't even see us even though it says IN his medical record that he can't wear a mask. The nurse tried to come in and have us wear it briefly...but only offering the type we absolutely have issues with. Just because the second option was clear and you could see the lips was irrelevant. Oddly enough, they failed to even offer the face shield. Face shields are stupid because 1) I can still feel the heat on my face and THAT is one of the biggest issues and 2) Face shields are to be used with liquids and only coming from one direction that you are facing. Since the virus, everyone is so freaked about, can be airborne on small water droplets hovering in the air....it's pointless and a waste. It goes against science and upsets me (that they aren't following science and wasting supplies unnecessarily). So we were kicked out with no accommodation. It is REQUIRED by law to make reasonable compromises and accommodations for those WITH actual medical conditions. We would've been fine rescheduling so we were the very first or last patient (so fewer people we would be around), or her standing behind a plastic sheet between us to prevent too much airflow connecting between us or whatever. But no. She wouldn't even come to the room and kicked us out. On top of that, the appointment that he scheduled was erased in his patient portal. Alarming. John contacted a patient advocate with the hospital and even they sounded upset about it. We aren't sure if they are going to take it seriously and do anything or just brush it under the rug. We have seen enough medical professionals here in the springs to know that many show that they are caring but don't actually care.

Very upsetting. It's been almost two weeks and still have not gotten anything back on that. I guess we will really see if they are serious about this.

Also have not gotten anything back about our discrimination incident with Sodexo either. EEOC said they would contact us when the next step was ready which I thought was going to be last week with the tentative time frame they gave. More on that when we get that back.

Lastly, I've been in a lot of pain and haven't been able to do much. Even basic cleaning around the house has been slowed WAY down. Any project I'm working on is interrupted frequently by pain and needing adjustments. I have to shift positions every 30mins to an hour. Due to trouble sleeping, I have to take naps during the day as well. Back pain interferes with EVERYTHING. So I've been doing TPI (Trigger Point Injections), PT (Physical Therapy), Epidurals, using back patches, taking back muscle relaxers, etc to deal with this. I have an appointment with a neurosurgeon to go over the possibility of needing back surgery. I'm not sure how the current methods may work overall on getting my back to working condition and no pain. Pinching of the nerves has been hurting my hands and fingers not letting me do much even if sitting. I just REALLY hope I don't have to do surgery! How the hell did my back get so messed up? Partially thinking of stress as my muscles contract and hold tightly to the point of crying due to the pain. We have had quite a few high-stress situations surrounding a lot of heavy physical work that could have put our back out and kept it out of place.

I think those are the main updates we have had for the past few months. Hopefully, my recovery will be quick so I can get back to doing things again!