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.
Changing to “who,” not “what.” I am the most proud of my husband, Adam, and the person he is becoming. When he started coming around, he was a neglected, angry, high-school dropout, and the love and attention he received from Mom and me motivated him (along with our nagging) to change for the better. Not long after we started dating, he studied and got his GED, thanks to a local church.
Fast-forward to now. I’ve never met a sweeter, more patient and loving person outside of Mom. I just cannot reconcile his stories of the past of him being a jerk, mean, and/or impatient. At least not with people he truly loves. He is a junior in college now, routinely on the honor roll, and going to therapy and taking his medications (and making sure I take mine). We are works in progress, but putting in the work is the most important part.
I know how difficult it is for men to agree to get help and actively seek it and put in the work. There’s a stigma around that, but I think the world would be a much better place if there wasn’t.
All of my days feel lazy and unproductive, yet I am trying from the moment I get up until I go to sleep. I told Adam I’m a 5-second Franny, a play off 10-second Tom from 50 First Dates. It’s not actually funny, but if I didn’t laugh about it, I’d be crying, so…🤷♀️.
I think the last time I felt rested was in Vegas the year Mom died, 11 years ago. We stayed at the Hard Rock Hotel the last night before going home, and the bed, pillows, and sheets were amazing! Plus, the shower was big enough to have a party in. I wish we would have stayed there the whole week, although it’s farther away from the popular places and other casinos. But, it was certainly relaxing!
Hard Rock Hotel and Casino, Las Vegas, Nevada, US
I would love to go on a vacation again! We haven’t been anywhere since then, except maybe stayed at a local hotel once or twice to use the pool and just have a night “out,” so to speak.
This is going to be a different post, and I’m not even sure I’ll publish it. I just have so much in my head, and it’s driving me crazy by not getting it out. Maybe if Mom was here, I’d confide in her, but honestly, I’m not sure I’d even do that because I tend to carry the heavy stuff alone and go on about the minor irritabilities. I see it as a sign of weakness (probably because of Dad). I don’t even want to bother my therapist with the vulnerable stuff! Some people find it weird, but I think it’s so much easier to post/talk to complete strangers, even the super-vulnerable stuff. I guess it doesn’t feel as personal, and there’s no need to put on a front when you can’t see those reading/listening to you.
I had my first brain MRI ever last month. I thought I’d had them before when I was a teenager and as recent as 2020 (which I erroneously told my neurologist), but I guess those were CT scans (I thought they were open MRIs for people with claustrophobia). It was not pleasant, but not because of claustrophobia, which I don’t suffer from, thankfully.
Due to AuDHD and Dandy Walker malformation, I am an irritable person, and I don’t like loud, repetitive (unless I’m the mood for them), or annoying noises. I’ve never been a fan of fireworks, and babies and kids really get on my nerves when they are being loud. To remedy this, I always remove myself from the situation or I just become very cranky and eventually regulate myself when I’m alone. It’s a lifelong thing, and I’ve managed to accommodate myself, and Adam’s very helpful in those situations as well.
In The Exorcist, Reagan (the main character) has an MRI, and it’s very noisy and intimidating. Well, the machines have not gotten quieter in 50 years. They gave me foam earplugs and stuffed a towel between my head and the head holder, mostly so I could not move my head, but it added some muffling, and it was still so loud.
On top of that, I wasn’t supposed to move, and my ADHD did not like that at all. No music, nothing to read, no moving/fidgeting for two hours. It was torture for me. A bright spot in this torture was that two nice ladies close to my age set me up and placed me in the machine, and when it was done and I was conveyor-belted out, there were three young gorgeous guys waiting to get me up and ready to go. Silver lining, I guess. I exclaimed, “Oh! This machine is amazing!” 🤦♀️🤦♀️
I received the results a few days later along with the images. Now, I cannot read scans to save my life, but some of these are so creepy-looking! I tried to correlate the images with the medical record, but I couldn’t. The assessment was only two or three sentences and said the scan’s consistent with Dandy Walker malformation (DWM), which Mom and I found out about when I was 17 after I had a brain CT due to frequent, nonmigrainous headaches.
Way back when Mom was pregnant with me, the doctors told her and Dad that a part of my brain hadn’t developed and that’s as far as things went. Every delayed milestone and “abnormal” thing (crossed eyes, not walking until after 2 years old, clumsy, forgetful, etc.) about me from birth was attributed to that very vague piece of information. Granted, DWM is very rare, and I still have to explain to most doctors what it is in general terms. I’ve met a very small number of doctors and PAs who were familiar with it.
I’ve transcribed doctor’s dictations for almost 20 years, so I knew what was being said in the report. The interesting part of the results was a 4 cm cyst somewhere in the right side of my brain in the occipital region (back of the head/occiput). There is some mass effect, but no midline shift, the latter of which basically means the cyst has not pushed/shifted my brain to make it off-center, which is a good thing. I couldn’t spot it in over 1,000 images, but I couldn’t see the malformed 4th ventricle, either, so that doesn’t mean anything except I’m not a radiologist and have no idea what I am looking at or for.
No idea what I’m looking at
Since I was born with DWM, the cyst is most likely benign and/or congenital, i.e., not malignant and present before birth, respectively, but this is where all the racing thoughts and stress come in.
My health has been declining for the last year-and-a-half now, but more realistically since Mom died, and I keep attributing it to everything but the Dandy Walker. Why? Because I know nothing substantial about it, but everything I’ve read doesn’t mention the condition worsening over time. I saw a neurologist for the first time in forever last month, which was to address numbness and tingling in my extremities, not DWM, and she is the one who ordered the MRI after I told her I have DWM. The last time I saw one, they did nerve conduction studies on my arms, but didn’t want to address my head. All my symptoms have been downplayed over the years, so why keep bringing them up?
I’ve thrown each worsening symptom at different disorders/illnesses like it’s spaghetti being thrown at a wall to see when it sticks. Vision loss? Diabetes. Memory issues and inability to retain what I read/watch? ADHD. Sensory overload? Autism. Weakness, fatigue, tremors, weight gain, emotional lability, etc.? Perimenopausal. Balance and coordination issues? Dandy Walker. The weird “brain things” I experience in certain random positions? Who knows? It’s always happened, but more frequently now. And on and on.
I began tracking the brain things in the Epsy app, and I stopped after a couple of weeks because they were just too frequent. I only recently began tracking again so I could show the neurosurgeon next month. Speaking of, that app has an Apple Watch app, and it makes tracking them super easy. I sleep with my watch on and can just log it while lying there. Technology, man…
My eyes!! *Shudder*
It never occurred to me that a cyst present from birth (which I’m not 100% certain about, as the CT scans never detected any) could become larger, or that a cyst would just develop, especially since I never suffered from enough hydrocephalus to need a shunt, according to the CTs. Regardless, a cyst has developed or become larger, and it seems I have been experiencing symptoms from that. I feel like I know nothing now, or that I never did, which is probably the more accurate statement.
I will be meeting the neurosurgeon next month. Since I am symptomatic and declining, surgery seems to be a possibility, and if that helps with my vision and diplopia and memory, I’m on board with it. From what I’ve read, they can drain the cyst, which, in my case, it’s probably full of CSF (although it could be hair, tissue, teeth, etc., depending on what type of cyst it is), and there are noninvasive and invasive options.
Considering I don’t get time off work, the noninvasive would be best. I’ve talked extensively about this with Copilot (Copie). For the past couple of days, it’s been a real challenge because my vision is so bad. It usually waxes and wanes, but it sure is waxing right now. Since that is the case, please ignore any typos or misspellings. I can’t “check my work,” so to speak 🤣🤣.
So, obviously, I’m holding this all in and worrying about it on my own. If I address it, it makes it real. If it’s real and impacting me, then I’m weak and vulnerable, and I spent my entire childhood being that way and just got hurt and ignored. This…this is why I’m in therapy.
G’day! I was waiting around to post until something positive happened, but that didn’t happen, so here I am. Black Betty was a complete bust and waste of money 😞. A local mechanic finally made it around to look at the strut, and he said it’s not driveable. That, plus the jack went through the body when Adam jacked it up for him 🙄. The guy actually told Adam to call the police because the truck never should have passed inspection. I think Adam did call them. When Adam called the garage that inspected it, the owner said it wasn’t he who did the inspection. For the record, whether he personally did it or not, it’s his garage and he’s still responsible and on the line for it. I really, really wanted a truck and fell in love with Black Betty without even riding in her.
The local mechanic does work for our neighbor, who vouched for our character (wish I could say the same for the mechanic’s character), and he told Adam he was given a car to tune up and sell. The car happened to have belonged to another neighbor, one of Mom’s coworkers and friends for 19 years. We knew the car was maintained well. It was a 2002 Buick, and he said he would sell it to us for $500. He had done some work on it, and it was good to go. Adam told him yes, after talking with me, and it would be about a month before we had the money. Guy said fine. It was parked and it wasn’t a problem.
A month passes, we get the $500, and Adam contacts the guy. We wait…And wait…And wait. About three weeks later, Adam finally gets to talk to the guy. He gave Adam the story that he drove the car to PA and it broke down and he left it there 🤔🤔. Sure, buddy. Just tell us you were a snake and sold it out from under us. If I was selling someone a car and it wasn’t my personal car that I was driving in the interim (which it wasn’t for him), I wouldn’t be driving it, period. It was slated for someone else, and it’s just the right thing to do. I mean, it was a month. It didn’t take us six months to get the money. And he said that was fine, just contact him when we had it. To make things clear, we did not approach him and ask to buy the car, we did not set the price, we did not ask for any charity from him. It was all on him, and then he pulled it out from under us. So, no vehicle in sight. Five years and counting.
We can’t even make it to medical appointments because ModivCare (a medical rideshare for those with transportation issues, through our health insurance) is crap and either cancels the rides the day of or just doesn’t show up at all.
This dress is fire.
On a lighter note, Taylor Swift’s new album came out on the 3rd and I’ve been bopping to that ever since. I was very excited and could hardly wait until midnight. I love the entire album, and while I wasn’t completely sold on the showgirl aesthetic, I do love some of the outfits, like the jeweled dress above. I really wanted to get a CD, but didn’t have the money at the time. She even released special ones for $7.99, but I still didn’t have it at the time 😞. Oh, well. I do have Spotify and Apple Music for $10 combined, so I’ve been streaming it. I think my favorites right now are Elizabeth Taylor, Opalite, and Father Figure. That combo got me downvoted on Reddit because it’s Reddit, and that site is a total cesspool.
Being a hermit, I yearn for some virtual human interaction, but most places are full of trash and/or way too left for me. Believe it or not, I don’t like being called names, which is what they do best, especially when confronted with facts or asking for sources for their claims. I’ll stick to talking with Copie. But I digress.
My Spotify Wrapped is going to be very female-oriented because Adam and I adore Taylor, Olivia Rodrigo, Sabrina Carpenter, Chappell Roan, and Billie Eilish. I like some male singers, of course, but the girls have been my jam this year. Benson Boone and Lewis Capaldi are awesome, as well as Teddy Swims. Ooh, and The Bacon Brothers!!
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.
There are so many, and some bring out the controversial side in me, but I’m at peace with that. If anyone spends any amount of time on Reddit, they will see a pattern of buzz words that flow through the site. Terms like bodily autonomy, parentalization, infantilization, parasocial, transphobic, TERF, narcissist(ic), homophobic, bigot, racist, to name a few. What the Reddit parrots don’t realize is the over-saturation of these words is akin to the story of the boy who cried wolf. All meaning is stripped from these words because they are overused and used incorrectly and/or used merely as an insult towards someone who dares to disagree with the loud minority. Not to mention, homophobic and transphobic aren’t even “real” words and do not accurately describe people who have differing views and opinions on those hot-button topics. But I digress. I honestly hate Reddit, but it’s pretty much the only place where I have any interaction with people outside the house. Ironically, it keeps me from wanting to ever leave the house.
Now, I love Chinese food. It’s one of my favorite cuisines, and I would eat it nearly every day if I could. In my family, it is a thing to say someone who likes something a lot is going to “turn into” something, just to emphasize that someone is really into something. Adam eats sandwiches every day, usually peanut butter sandwiches or something like bologna and cheese. I’ve made the comment that he is going to turn into a sandwich.
Since I love Chinese food, Mom used to tell me I was going to turn into a Chinese person from eating it so much. Nowadays (that sounds so old), that would be considered “racist.” My mom’s now a big honkin’ racist. At this point, it’s a knee-jerk reaction because someone who is non-Chinese dared to say the word(s) Chinese/Chinese person in relation to something that is relative and accurate to Chinese people. (The horror! The tragedy!) I wonder how these people feel about the song Turning Japanese…
The short answer to what brings me peace is water. My featured image is a photo of Niagara Falls from my fancy 2MP digital camera (my first digital camera!) Mom bought me to use while I was over the road in the lower 48 states with my ex. That was between ’00-’03, so over 20 years ago. (God, I’m aging myself. It’s hard to believe I’m only 29!)
I was at Niagara Falls in May of whatever year, and the falls was still partially frozen. It was so beautiful and peaceful there, and I just loved it. I’ve always loved water – looking at it, being in it, hearing it – and Niagara did not disappoint. It was pretty chilly, and a lot louder than I anticipated, but I would love to go back there someday. I have a few more tiny pictures from that day. I wanted to go to Canada, so the border people allowed me to cross the road into the country, which I thought was sweet 🙂.
I’m not sure if this is entirely uninteresting or just eyeroll-inducing, but there is a Boy Who Cried Wolf karma going on here and that possibly adds to my complete apathy.
The sweet, adorable, talented Sydney Sweeney was in an American Eagle ad very recently, and the loudest echochamber in the US lost its collective mind. I laughed when I saw the commercial. AE wordplays with jeans and genes, and states Sydney Sweeney has great genes jeans, and her jeans are blue. She speaks of how genes are passed down to children and affect a person’s attributes. All facts, which the dissenters take issue with facts to begin with.
The TikTok crowd is ready to fight, which isn’t surprising, and yelling Nazi this and Hitler that, which is totally insulting and trivializing an actual atrocity known as the Holocaust. When a white-that-week, blonde-haired Beyonce dropped her Levi’s ad, it was heralded as empowering and boss and feminist. When a beautiful, white, blonde-haired, blue-eyed actress dropped her ad, it’s Nazi propaganda. Seriously.
Because, you see, one can’t have great genes (dropping the jeans pretense) if they are white. Asians can have great genes, blacks can have great genes, Hispanics can have great genes, Italians can have great genes, and on. In the US, white people are supposed to slink around and self-flagellate for at least the next hundred years. You can’t say it’s okay to be white, because it isn’t, according to the racists and white apologists. I am certainly connected to this ad because I am an Irish American/Native American who sees the constant anti-white racism and extreme anti-right/right-of-center online every day. It’s everywhere and completely acceptable. It’s unchecked mental illness, it’s encouraged, and it’s scary.
To say one has great genes is not saying others do not by default. Nowhere is it stated better genes/jeans. Period. It’s not an either/or like so many want people to believe. My cousins have great genes. My gorgeous husband has great genes in the eyes and jawline department. My genes kind of suck, but I can appreciate other people’s great genes without causing an uproar and trying to destroy someone’s life. (As of this writing, Ms. Sweeney is being harassed publicly and dox’d, with her voter registration made more public than it was as public record in her state of residence.)
Nobody mentions that the super-cute “Sydney Sweeney jean’s” entire profits are going to a domestic abuse program, as did her ad salary. They just wish career destruction and death on her because she is out there doing her job and making a living.
Cari R Esta 