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.
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.
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…
I hurriedly tied up the last post, as I had started it in February after getting Black Betty (the truck), then promptly forgot about it until I logged in to create a catch-up post 😒. Anyway, our nephew’s friend came to change the struts on Black Betty (bam-a-lam) and was concerned about what he saw when he jacked her up. He told Adam it was a good thing Adam didn’t take the truck down to the fire department to replace the struts — which I had suggested since we don’t have a paved driveway — because the spring could “go” at any minute. He didn’t even want to back the truck up in the driveway.
Well, that just gave me another problem to solve, so I was off to the races to find a solution, which entailed Google and Reddit. I posted the picture (above) Adam took of the broken strut in a mechanic sub on Reddit, and the replies were terrifying. Everyone was very kind and patient, which is incredibly surprising for Reddit, but a lot of “grenade,” “bomb,” “dangerous,” and “kill you” were being thrown around, which had me shaking in my boots. They all said getting the spring out was scary work because it’s under so much tension. There is a spring compression tool, but many of the Redditors said it’s scary to use it and could be dangerous.
The helpful, yet discouraging information deflated my excitement balloon I’d had about having a truck. I looked up the cost of getting struts changed professionally and it was estimated to be between $1,500 and $3,000 for parts and labor. More than I paid for Betty. We have the new struts, and I read mechanics will work with supplied parts and only charge for labor, but labor would still be significant, especially with the condition the broken strut is in because getting it out is the problem. Adam has replaced normal struts before. The complicated labor is in addition to having Betty towed to a shop. I just…It just sucks. Not a lot has gone right since Mom died.
Next, I’ll tell you all about the water leaks and how we are using 13,000 gallons of water a month (our average use is around 1,300/month)!
Well…It has been a time, let me tell you. I don’t know what I’ve mentioned and what I haven’t, so I may repeat myself; just pretend it’s for emphasis. I got my cap, gown, honors cord, and diploma holder (frame?) from college, and I was pretty excited. The commencement I’m attending virtually is on December 14, but I have not registered for it because FAFSA is stupid. I consolidated my loans a few weeks or months ago and doing that created an overpayment of $1, which isn’t even an overpayment but some residual from the consolidation.
Note the “Excess Amount”
This could not happen. I can have $32,000 in student loans, but $32,001 is unacceptable? So, these geniuses stop my financial aid and throw me into forbearance and nobody thinks to inform me about it for two months. The only reason I found out is because Adam called the school, but we didn’t find out in the first phone call — oh, no, it took four phone calls with 2- and 3-hour hold times before we were told what was going on.
Fortunately, I am not kicked out of school (yet), and the school financial services people were very nice and empathetic, if a bit in the dark about my account. We are heading into the third month of dealing with this and last term’s aid has not shown up. We’re supposed to receive this term’s aid next week. So…yeah. I’m essentially late in paying for three of my classes through no fault of my own (unless you count me choosing to consolidate loans, then it is my fault) and I am supposed to graduate next month. The fat cherry on that sundae is my last class is a redo. I’m taking Seminar in American Literature instead of Seminar in Global Literature, which I took the last time (I switched to get away from the instructor) and I am stuck with the same instructor who accused me of using AI for my homework (I’m a writer; I don’t rely on AI). The stress has been great, literally and sarcastically.
Speaking of stress, I downloaded StressWatch for my Apple Watch, and it is pretty cool. It uses HRV (heart rate variability) to monitor stress levels and lets me know when I’m becoming stressed. It knows several minutes before I even start to experience symptoms. I also recently downloaded an app called Finch, which is supposed to help with ADHD and executive dysfunction. I shared it with Adam, and we are two little baby finches sending hugs and gratitude to each other while completing goals. It’s very cute.
In other news, I was prescribed an insulin pump and had to cancel my training for it three times because of transportation issues, and Adam and I just figured it out ourselves. Adam reads the book and shows and tells me what to do because I can’t remember what I read and get stuff confused. It was very overwhelming at first, but I’m slowly getting the hang of it. That’s not counting me wasting five infusion sets because I forgot to remove the needle cover for Every. Single. One. I had a mini meltdown and threw one of them away too hard for Adam’s liking, so he came over and put the sixth one on me and it took him, like, five seconds to do.
My amoxapine is helping with my productivity at work, but not my memory and executive dysfunction. I can see why since it’s not a stimulant, but I was hoping. The ADHD has worsened so much since Mom died — either that or she deftly handled my limitations and didn’t make them feel like limitations, which she totally did with my autism. I could feel and think I am being normal (for me) because she had my back, and I just flew through life none the wiser until I got evaluated after she died.
I am so very proud of my husband! After finally listening to me, and seeing how miserable I was, he managed to get our psychiatrist to switch one of his medications and I am starting to get my husband back. I missed him. I don’t know if our doctor is getting money to push these medications but Adam’s told him numerous times they weren’t helping, and he would not change them. I’m still not sold on the Trintellix. I had a genetic test to see what worked for my body, and I would like Adam to get it as well but I think our doctor moved the main office back near the state university since we “see” him via phone since COVID. If he could do it at the hospital, that would be great.
Anyway, Adam’s starting to write again and wanting to paint again. He’s mowed the front yard and weedeated — I can see Mom’s flower bed! Heck, I can see our front yard! I’ve been wanting to go out with the boys and walk around near the woods but the grass was too high and the woods are moving closer to the house. We have to get a new weedeater because the one I got is battery-operated and really light and doesn’t get the job done on what those stupid zinc plant people replaced our grass with 😡. Oh, yeah; we live in a small town that had a zinc plant, which has been demolished, and DuPont replaced our yard with nothing but weeds. And I really mean weeds. Lowest bidder is the winner, huh?
On top of all that, he’s been doing the laundry and the dishes, and he cooks for me regularly. Most importantly, he comes and sees me whenever I get up and visits with me before I start work, which is the best. He’s noticed I’ve been…more attracted…to him than I was, and I told him it’s because the medicine has helped him be who he was before Mom died, in fewer words. I told him helping out with the house stuff is sexier than acting/looking sexy.
Oh! Our floor between the water heater and the furnace has been getting higher and higher and we could not figure out why. This has been slowly happening for several years, which I thought Piper was peeing there or Phin’s ice cubes were melting there (he loved to play soccer with ice). Then, it started dipping. The hills and dips really escalated within the past month or two, so Adam cut the flooring and peeled it back and the subfloor is drenched under there. No leaky washer, water heater, or dishwasher. From what he could find online, it seems our water heater is boiling over and soaking into the floor, which is possibly OSB, probably lower quality something else. Another part of the floor to replace!
I really can’t be mad about the house because I’m too happy to have my husband back, honestly. Mom sure did a number on us when she died.
Huh. WP PC app is back to normal, so I don’t know what that was all about.
It’s April again, and I thought things would get easier but that isn’t the case. April 10, National Siblings Day, marked five years since my brother died. He didn’t even make it to 40. We weren’t physically close as he lived in a different state and neither of us liked using the phone, but I adored him and loved when he came to visit or I went to his house. After Mom died, I got the best sleep and rest when I stayed with him and his family for a weekend.
April 19th will make 10 years since Mom died. That is also the date of Taylor Swift’s new album, so I will have something to smile about at least. Mom and I were/are longtime fans since Tim McGraw. I cannot believe it has been a decade that she has been gone. I wish there was an AI program that could create her voice. All I have for that is an answering machine outgoing message that I captured on my phone after she died. No videos. No recordings.
I don’t sound like her, so I can’t even record myself and pretend it’s her. I sound more like my dad, unfortunately. My birthday is at the end of the month, 10 days after Mom died. I don’t celebrate it. Depression and trauma covers an entire month for me! I will be 29 again this year, per usual. Just like Phineas is 11 months old every year. He is my baby and always will be.
I was banned from Reddit again but only for 7 days this time. I made a comment that I don’t like the F-word and wish people would stop using it and someone called me a baby, so I tagged Adam in it. Adam made a comment to this guy, so the loser got Adam banned from the sub and when I participated in another post in the same sub, I was banned for “ban evasion” because the idiots at Reddit cannot comprehend that more than one person in a household can have a Reddit account. I really, really hate Reddit with a passion but I have no other social outlet. X is a cesspool as well, and Facebook isn’t really that active since they screwed up the feed and don’t show recent posts first. I don’t get Tumblr, although I do have an account I reactivated yesterday.
I appealed Reddit’s decision, again, and was turned down, again. It makes my blood boil, but I am trying to keep my mouth shut. Reddit workers and moderators are such fascists with too much time on their hands. They have subreddits with any type of porn (made up of Reddit users) one can imagine, subs for photos of upskirt shots (not consenual), and some of the most disgusting fetish subs, but I get banned because some pissant can dish it out but not take it when my husband defends me. It has not been a good month 😒.
I guess this month makes a year since I started this site/blog. Yay, me! Why do we use the word “yay” when the correct spelling is “yea”? I do it because people think I just made a typo while trying to say “yeah.” Why do people just take it upon themselves to change the way things are spelled and then claim that is what is correct? Like “could of, should of, would of.” Or, one of the worst phrases, “I could care less.” You’re not stating you really don’t care by saying you could actually care less than you do. Come on, people. If you could not tell, I am very cranky at the moment. It seems like it was New Years just last week.
In my next post, I will talk about how utterly insufferable Adam is because of Neville!! If only I had listened to myself. (Do I ever??) Also, we will be losing one of our babies very soon.
I started a new medicine this week because we still have not found an ADHD medicine that helps me (I think I could do crack without feeling a thing) due to my Dandy Walker or one of my many autoimmune disorders, I’m assuming. I am to take it three times a day, which has been a trip even with the Hero Health machine (which I love, btw).
Anyway, like most antidepressants, I dream and remember those dreams when I first start taking them, and this has been no different. I may dream after adjusting to the medications, but not that I remember. The first night, I dreamt I was with Johnny Depp. He looked kind of like his character in Secret Window and had a floppy brown leather hat (not like the black hat in the movie), glasses, a bleached denim shirt, and all his usual accessories. I don’t know where we were or why we were together, but he was very kind and humble.
I do remember that I changed my shirt a lot and I apologized about it and he was cool with that. Also, he commented about the amount of cat food we had, but I can’t remember ever seeing Mom’s house in the dream. I told him it wasn’t a lot of cat food when living with five cats (to paraphrase). I hadn’t watched any of his movies or read anything about him so I don’t know why he was in my dream. Usually, my dreams have a little bit of life sprinkled in them. I very much recommend meeting him in person.
The next night, I dreamt about having low blood sugar, and I vaguely remember Adam waking me up and giving me cookies, so my sugar was low for real. Sometimes I remember him feeding me, sometimes I don’t, and sometimes I think I dreamt it and have to ask him. With my continuous glucose monitor (CGM), he is alerted on his phone when my sugar goes below 55, which is awesome because it does that so often. My watch alerts me, but I sleep through it because I am obviously out of my head.
In my dream, we were at my Family Christmas at one of my family members’ houses, and I don’t know if Adam was afraid they would criticize him for letting my sugar get low (not his fault, of course) or not having any sugar on hand in case it got low, but I told him abruptly that it was low and then I went unconscious. I saw the rest of my dream from above us. He basically Weekend at Bernie’d me so my family would not know I was not conscious. He made me wave by pulling my sleeve, kept my head on his arm or chest, walked me through the house, visited with my family, etc., while I was all Bernie’d out. And that’s all I remember.
Cari R Esta 