Tag: Disability

Back to the Drawing Board

Well, the neurosurgery appointment was a big, fat waste of time. The doctor compared the MRI to the CT scan I had in 2020 when I went to the ER for severe hypokalemia, and he said nothing had changed from that, so he doesn’t want to do anything. This doesn’t help me because I’ve had symptoms my entire life, and apparently have to keep living with them 🙄. I was hoping for improvement, whether it was an attempt to drain the cyst or place a shunt so the CSF would reroute to my stomach and relieve some of the pressure on my brain. Honestly, he could have told me that on the phone.

I don’t like living with headaches, obviously. We found out about the Dandy Walker malformation when I was 17 because I was having headaches so often. They haven’t stopped. I still don’t know if the cyst was there at that time because those records aren’t online, and the doctors haven’t mentioned reviewing any records that far back.

The image is mirrored – the R to the left represents the right side.

I don’t have the image that the neurosurgeon showed us, but the one above is fairly close. The little gray circle in the middle-ish is the tip of my cervical spine, and the two gray blobs out from it are the cyst and the enlarged 4th ventricle. The fuzzy black and white blob near the cyst is a mastoid effusion, which I have symptoms from it as well but didn’t know existed and have no idea when it developed. I can hear just fine with my right ear, but I get pain behind my ear and jaw pain, plus that’s the side of my jaw that locks, and I now have an offset bite, which really bothers me aesthetically. I look like Mary Sanderson from Hocus Pocus 🙄🙄.

Everyone I’ve seen this year treats my results as “unremarkable,” but I’m just learning about this stuff. I knew I had a rare congenital brain defect which affected my balance and coordination. That’s all the information I had. I didn’t know the frequent headaches, shooting pain, jaw locking and pain, bad vision, brain nigglings/auras(?), etc., were all attributable to it, and since learning that, I want something to be done. If someone had a rotten tooth that gave them a lot of trouble, the dentist wouldn’t leave it in there and expect the patient to live with the symptoms from it, right?

I spent so much time and effort documenting my symptoms and took a printout to the doctor and the nurse barely looked at it and the surgeon didn’t look at it at all. At least I will have my MRI scan included as additional evidence in my upcoming second disability hearing in February. That’s happening, and I have no idea why I am having a second hearing. I don’t know if that is a good thing or bad thing. As if the first hearing wasn’t terrifying enough for me.

…And, Yes, I Raised My Left Hand

I used up all of my spoons before 9:30 a.m. today, and I didn’t even leave the house. Today is a day that will go down in infamy — in my head. I had my disability hearing this morning, and discovered I would crumple like a piece of tissue paper and confess to any crime I never committed if I ever set foot on a witness stand. Nobody would have to say a word to me, just look at me sternly. I would be Law & Order dun-done! It all started smoothly with me raising my left hand before finally switching to my right 🙄. Fortunately, they could not see me since the hearing was over the phone.

The judge asked me questions first, and that was nerve-wracking in itself. If I didn’t answer the question correctly because I didn’t understand what he was asking of me, he just repeated the question verbatim without rephrasing or any kind of explanation. That was very intimidating to me and made me feel stupid. When my lawyer questioned me, it was easier because he would rephrase or elaborate when I didn’t understand what he was asking of me.

Notably, and embarrassingly, my lawyer asked me if I was “bad at falling,” to which I replied that, no, I was good at falling, and he asked if I was saying I fall frequently or do not fall. After thinking on it, I understood what was being asked and felt very autistic in that moment. While Adam would understand my answer and clarify the question for me, I fear the judge thought I was being a smartass or pedantic, which I wasn’t. I simply did not feel I had the time to think on the answers, especially with how quickly the questions were being asked. This happened with several questions.

I got choked up on questions regarding Mom’s death, suicidal ideation, suicide attempts, and self-harm. I know it had to just kill Adam that he couldn’t comfort me since he wasn’t supposed to be in the same room at the time.

The social security people provided an expert to detail which jobs I would be able to do with my level of disabilities, and that was even more nerve-wracking for me because I could not refute any of the listed jobs, which the jobs were so obscure, and none could be done from home (I’m agoraphobic), and I certainly couldn’t do the ones she mentioned due to carpal tunnel and arthritic hands. There were only three available sedentary jobs they felt I could do, which were mail sorter, eyeglass lens polisher, and “electronics checker.” Where do they find these jobs?

She named even more jobs that were “light duty,” not sedentary, but when my lawyer cross-examined her and asked how many of those jobs could be done by someone with a history of falling who needs some assistance walking, she replied, “None.” He thought that was a promising answer.

Regardless, there are zero jobs that were listed that I could do in my home, on my own flexible schedule with as many breaks as I require. I spoke of my job I’ve been doing for 19 years and how difficult it is to do because of ADHD, and how it takes me an entire day to eke out two hours’ worth of work. I also mentioned how I am paid by production, meaning I get paid solely for what I produce even though I have to do research in my work frequently.

As mentioned, my lawyer felt confident about the hearing and told me so after I spoke with him after the hearing concluded. I told him how frustrating it was that I could not refute the jobs listed, and he understood my frustration but was pleased with how few job opportunities they came up with. There is an automatic appeal process that will take place if the verdict is not in my favor, but after that, it would go to a federal appeal court, which I really don’t want to do. Of course, I can file again in the future, but the process takes over two years each time. By that time, however, I would have more medical documentation and evidence to provide to the court. So, now, we wait.

Invisible (Social) Disabilities in a Chronically Online World

As a society, online and in person, people from many countries are on a mission that I won’t get into, but the themes are unity, tolerance, and acceptance — unless you’re overweight, unattractive, disabled, or disagree with the popular narrative. As a whole, the disability angle seems to be improving except for those with invisible disabilities and/or disabilities that affect social and communication skills. Online, people get nasty (that seems to be the default now), and if you mention suffering from one of the socially-impaired disabilities, you’re accused of making excuses or outright lying. As an agoraphobic hermit, I’ll be referring to the online community.

In short, people don’t like being disagreed with or someone being objective. My PDA (pathological demand avoidance) and ODD causes me to be a devil’s advocate, and even suggesting a different view places me as the enemy to whomever I’m speaking with, and they respond with the typical name-calling and labels instead of engaging in actual discussion or, Heaven forbid, acknowledging a different point of view.

I’m neither liberal nor conservative, meninist nor feminist, and I couldn’t care less about someone’s sexual orientation or transgenderism. However, I argue both sides of the coin because of my PDA/ODD. Those arguments say nothing about my views, as I will not discuss my views on social media. Objectivity does not mean choosing a side, and people can certainly be in the middle on any societal issue.

Take abortion for example. Being in the medical field for almost 20 years, I know for a fact that some women use abortion as a form of birth control (many have admitted it to the doctors and medical staff). It’s not hyperbole or extremism; simply fact. It would probably be less of an issue with abortion pills, but surgical abortions pose a serious health risk to women and that risk gets higher with each abortion performed. So, when someone is 100% for abortions for any reason, it’s easy to argue against that validly. Likewise, I am a firm believer in staying out of women’s healthcare and uteri. When someone is 100% against abortions and cites their religious views as the reason, it’s easy to argue against that as well. And I will argue both at any given time because of that pesky defiance part. I strive to disrupt the echo chamber.

Online, none of the above is acceptable to 98% of people. Now, I don’t do this stuff on purpose to argue and be a contrarian; it’s part of my social disability. However, that doesn’t stop me from being labeled as some kind of -ist or -phobe or bigot; whatever buzzword of the day to make others feel superior. The ones doing such don’t know my views; they only know my valid arguments and what I want the online world to see, but that never matters, and it’s really annoying.

Adam gets and accepts it because he’s used to it, but does one really need to justify someone who can argue both sides and be objective? Is one’s fund of knowledge so small and conceit so large that they can’t take even reading a different perspective without lobbing assumptions and insults?

this is me trying

I just don’t know what to do anymore. I have talked, hinted, blogged, poeted, texted, reacted, proacted, and nothing has changed. Why do men continue to think that it is a woman’s job to assume a motherly role? There are not strict gender roles any longer for majority thinkers.

I can take the trash out, do the litter box, get myself up for appointments, and get things done, whether I outsource those jobs or do them myself. I don’t need a man, I need a partner (unless I want to be single, then I need myself, the cats, and Ollie Bear).

Don’t want to do the “dirty work”? Choose the more desirable tasks without being asked or told and those are what you get. If you unload the dishwasher and consider that your part, guess what the other person is doing? Loading the dirty dishes into the dishwasher. My brother and I had that chore after school and he would run home (he pushed me down a hill a couple of times to get home before me) so he could unload the dishes and I would have to touch the dirty, gross ones. If the dishwasher was empty and just needed loaded, he made sure I got home before he did. Siblings are great, huh 😂😂? But leave the decision-making to someone else and at their discretion, you’re on 💩 duty every time; quite literally with a puppy and blind cat. That’s the way the cookie crumbles.

My guts are spilling out (literally) and I’m still doing more than my part. Taylor dropped a lyric from the new album and it sums it up well, as she tends to do: Even statues crumble if they’re made to wait. I have seen a lot of instances where men and women think their partners will stay around because their parents stayed together regardless of how they were treated. I am not like that. My mom became a strong woman and taught me there is a limit and I can certainly stand my ground and say enough is enough (and I will).

I have changed everything for the loml in the last ten years. I went from having a caretaker my entire life, briefly having two in Mom and Adam for three years, to running an entire household by myself, having an independent, and trying to figure out everything. Mom didn’t know she was going to die and I would be flying solo. I think she thought if she didn’t make plans and preparations, she possibly could not die, which I totally get. She taught me many things but not everything (do parents ever get the opportunity to teach their children everything they want to before they die?).

I mean, I paid Mom’s house off with her life insurance by mailing a very large personal check via the post office… Obviously, that was incredibly stupid but I did not know that was a no-no because I knew about traveler’s checks but not certified checks or other secure ways to make transactions, like money orders, in 2014. I just knew I needed to get it done so I wouldn’t have to worry about the mortgage. The house bank called and asked if I was attempting to pay the house off and I think I started crying and told them what was going on. They were very helpful and took care of it for me.

All this is on top of living with someone who was too emotionally abused and stunted for me to be able to be myself. I never had to pretend or suppress with Mom when I got older because she was used to me and would back off and let me regulate on my own. Now, when I’m overwhelmed and need to decompress, I am asked “what’s wrong?” constantly until I answer or he marches off in a huff.

Even though we have a nephew on the spectrum, I am not supposed to behave or react out of neurotypical character. I have always had such expectations placed on me when other family wasn’t held to the same. I was supposed to be the good girl, the polite one, never speak up, never confront, let things go, etc. I cannot become irrationally frustrated or physical with things or have my entire mood ruined because one small thing was not as I expected or wanted it. That results in me containing everything, and my mental and physical health deteriorates until I can barely function and I break instead of merely snapping.

I really don’t ask for much, seriously. I want a relatively clean home free of ants or ladybugs (which means food and drink and trash not left all over the house), a mowed and trimmed lawn, and things repaired around the house. We’ve had a roof leak in the bathroom forever that should have been repaired a long time ago. But instead of getting it done, he’s going to wait until the ceiling caves in and then try to comfort me when I lose my 💩 because I don’t have the money to fix the roof or the ceiling.

When I just stop to see how bad he lets things get, it’s pointed out to me as soon as I fuss at him (well, you left this out and that there; you do this and that; you act this way; everything is a comparison with no responsibility taken, ever).

Of course, I’m the dramatic and unreasonable one for wanting it fixed yesterday, or wanting anything done, really. I already have to figure out how to replace the floors and subfloors in the kitchen, living room, and Mom’s room on my own because of the cats. I didn’t grow up in garbage and I don’t like being forced to live in it just because someone else did and has zero self-respect. Love and support are not the only things one needs.

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The Last Tunnel on the Right

I had an EMG on my arms yesterday and I didn’t really like the people who saw me. The woman who shocked me was all right; not exactly pleasant, but not rude, either. The doctor came in and was very cold and to the point, which makes me uncomfortable. He told me he was going to insert “just the tip” and record it or listen or whatever, and before I could ask, “The tip of what?”, he started poking me with a needle up and down my arms. It did not feel good. We could see and hear my nerves talking on the computer, which was pretty cool. Some spots he poked were loud and some were quiet. Afterward, he typed some stuff in a pre-drafted letter that was on the computer screen and said he would send it to my doctor, then left. I don’t know which doctor he’s sending it to; I don’t know what the letter said; I don’t know what the results were.

In the hallway, I googled him, and his reviews were less than stellar, as in 1 star. He allegedly has a bad habit of not communicating with his patients 😒. Adam, who read over the doctor’s shoulder while he was typing (yay for being nosy!), said he mentioned median nerve neuropathy, which isn’t surprising. The doctor reminded me of Mom’s first GYN oncologist, whom we totally should have sued for malpractice and I hate that we didn’t. By the time she switched doctors, it was too late for her. Her second doctor said he always does at least one round of chemo after any cancer-removing surgery.

I already knew I have carpal tunnel syndrome (CTS) because of the symptoms and how much I type and work at the computer, plus they told me; I just need some treatment for the pain since it’s been getting worse. I have a hard time braiding my hair now because of my hands cramping up, but I do have very long hair. Fortunately, the CTS is not too bad yet. I have tiny bone fragments at the base of my thumb and degenerative changes to the outer wrist of my right hand, which the other orthopedic guy actually told me before setting up the EMG appointment. He, I liked, except for when he hurt me.

“Looking” at the door

For some reason, Phin, my little boy who can’t see, wants to be in the bathroom with Adam or me every chance he gets. Whenever we stand up to go somewhere, he gets all excited and starts pinballing toward the bathroom; running into objects, cabinets, boxes, whatever is on or near the floor. A lot of the time, he gets confused and goes to the utility room and both spare rooms before finally making it to the bathroom. Once in the bathroom, he gets up on the sink to get pets and/or get a drink from the faucet. He gets so excited and rattlesnakes his tail, which is just adorable. He doesn’t always get a drink, so that’s not his primary reason for going in there, but we don’t know what is. I thought he would not like the bathroom since it’s the one where he lost his little teeth while trying to jump up on the sink. Before I started using Mom’s bathroom exclusively, he would go to the main(?) bathroom with me and I would put him up on the sink since he’s afraid of jumping up there after his teeth accident. If he made it to the bathroom before me, he would jump onto the toilet seat, then up on the sink and wait for me.

A couple years ago, I bought a bidet seat and had it in the main bathroom. This seat is fairly big and it slopes downward, which I didn’t even think about when I bought it. When I went to the bathroom, Phin tried jumping up on the seat without knowing it was different and slid back onto the floor. He tried it a couple of times and then gave up. Adam spent a good chunk of time one day teaching Phin to jump onto the side of the tub, get on the toilet tank, walk across it, then get onto the sink. This was the cutest thing ever, with Adam crouching on the floor and Phin standing with his front paws on the tub looking toward him. The bidet seat was in that bathroom for a couple of months, then Adam put it in Mom’s bathroom for me, where it’s been since. However, Phin still gets onto the sink in the main bathroom by way of the tub and toilet tank even though I’ve helped him feel that the regular toilet seat was back.

One time while I was showering in Mom’s bathroom, I kept hearing this clunk, clunk, clunk, so I opened the shower door and there was Phin on the toilet tank, thinking the sink was beside the toilet like in the other bathroom, which it is not. He never spent much time in Mom’s bathroom since Adam and I never used it. He was trying to get down off the tank and kept rocking the lid. I don’t know how he managed to get on the tank with the bidet seat there. He breaks my heart every day but I don’t know what else I can do for him. I don’t get how he can remember how to get on the sink from the tub, which he hasn’t been doing long, but not remember his way through the house. He has been here since he was six weeks old.

Last night, instead of climbing from the hamper onto my desk in front of my TV/monitor, he got mixed up and went behind the TV and fell off the desk 😞. A week or so ago, Gandi broke the glass of one of my 8″ x 10″ photo collages and I had the collage lying on the kitchen bar with one side hanging slightly off the bar as it was wider than the bar itself. Phin was trying to get to me and stepped on the part of the collage that was hanging off and fell off the bar into metal folding chairs, hitting the garbage can and a roasting pan that was to be thrown away 😿😿. I don’t know how to protect him more.

My little furry heart 💗
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Check Out the Brain on Her!

I was born with Dandy Walker syndrome, which is a malformation in the back of the brain near the brainstem. The malformation occurs in the part of the brain (the cerebellum, fourth ventricle) that controls balance, coordination, fine motor skills, vision, and cognitive thinking. While pregnant with me, Mom was simply told that part of my brain didn’t develop and that was it. Granted, DWS isn’t common, so a lot of doctors, especially back then, hadn’t heard of it.

Now, more and more doctors and medical staff I’ve seen are at least familiar with it. One doctor even said, “So, you’re aware DWS affects your liver and kidneys?” Huh? Yeah…sure, I know. (Nope. I didn’t know.) I guess that explains the hydronephrosis, nonalcoholic liver cirrhosis, and diabetes type 1.5, the latter two of which are autoimmune diseases.

I didn’t walk until I was 2, and I was in physical therapy to help with that, but I don’t remember it. We didn’t learn I had DWS until I was 17 and my pediatrician ordered a head CT scan to see why I was having headaches all the time. Fortunately, I only have a small amount of hydrocephalus, so I don’t require a VP shunt.

I also had crossed eyes, which were surgically corrected at 18 months old, and a strawberry birthmark – a hemangioma – up from my forehead a little past the start of my hairline. My brother took care of my birthmark one night when he dropped a toy stove from the top bunkbed onto my head, which I had poked out from my bunkbed to ask him what he had said. He had, in fact, told me to watch out because he was dropping the toy from his bed and he didn’t want to hit me with it. I find this hilarious; even more so when he would tell the story. I don’t remember that, either, but I was under 5 at the time.

So, all of that to say, I have some limitations. With DWS and AuDHD, I think differently and perceive things differently and I have some problems with critical thinking, and my depth perception isn’t the greatest. I also have diplopia, which is double vision. I’ve had 3 eye surgeries and the surgeon informed me that it’s my brain mucking things up because they can’t get my eyes any straighter than they are. I must sound like a monster 😂.

My husband, Adam, didn’t know any of the above when we met in high school or when we started dating 9 years later, as my medical diagnoses are not something I openly talk about. My family is very open with each other about their health issues except when they pertain to one’s mental state, which is odd because depression and bipolar are big on the maternal side of my family. Mom’s explanation for my personality and behavior was, “Oh, that’s just Cari,” and family’s like, “Oh, okay.” I love that my family is so accepting.

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