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.
Prove me Wrong… A debate in good faith with a young man of faith — unabashedly so. Hate proved him right.
They gathered to argue — Agree — Learn — Teach — Except for one. Hate came to silence it all.
Its ideology whistled through the charged air, tore through the neck — Of a kind man — A husband — A father — A forever hopeful who held love for all. His respect for others did not stop at opposing beliefs.
Hate etched its intentions on bullets — (hey, fascist, catch!) — Its voice exploded in a red waterfall.
His little girl ran to him as life left his body. She sought comfort — reassurance — not knowing her world was changed.
His views were not mine. His words were not mine. But death is nonpartisan. Grief does not ask how you vote.
We mourn in fragments and forums, in soundbites and silence. We mourn because Hate came to campus, and it never left.
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.
Anyone who knows me knows that I love water. It is one thing I love being in and around that soothes me, whether I’m looking at it, listening to it, or swimming in it. Now…I am so flippin’ sick of water! I never thought I would ever say or think that.
The Good
Adam got the leak fixed! It was down right at the meter (very easily could have been the water department’s responsibility to fix), so much so that Adam had to remove the pipe thing that houses the meter in order to fix the broken pipe. He dug a big ol’ hole over 5 feet deep, but I only took a picture of the small hole he dug when he found the leak site. I could see his blond head out there bobbing up and down at ground level when I checked on him. The new piece of pipe was cheap, but he had to change some parts that they don’t make anymore, and those cost $50 after buying the pipe 😒. He didn’t know he needed the extra parts, so we had to go without water for around 12 hours, give or take.
The Bad
Water is something we totally take for granted, so neither of us thought about the important-yet-mundane things like the ice maker and the bidet. I mean, that stuff is always there, you know? Oh, and the kids needed water, too. Oops. Adam went to our neighbor’s with a couple of gallon jugs, and they graciously allowed him to fill them up. We went to bed after that, and Adam finished fixing the leak in the morning when the parts arrived via Door Dash (Black Betty is still not fixed).
The Ugly
Our celebration turned to consternation when I went to the kitchen to get ice. The ice maker wasn’t working even though Adam had turned the water back on and the ice maker was on. That was distressing because a replacement is $100, and we could not find our ice cube trays. I know they are here somewhere…
So, he started tinkering with that, found some obstructions and cleared them and dried the ice maker, and then we just had to wait. Meanwhile, he discovered that the bidet was leaking. I remembered hearing it dripping in the morning while Adam was sleeping, but then I forgot about it. It wasn’t a huge drip. It’s just like a bunch of dominoes here, I swear.
He tried to fix the bidet and had no luck with it, so he unplugged it and turned the water off to the toilet. I can’t get a new bidet for several weeks, which really sucks because I love having one and need one because of my shoulders and stupid peri, and we don’t have to buy toilet paper since we use washable Unpaper. I thought it was an either/or deal, so when I plugged the bidet in and turned the water on to use the bathroom, I left the water on and unplugged the bidet so it wouldn’t fill back up and leak. That was the wrong thing to do.
The bidet leak was even bigger and water was running down the toilet and onto the floor and into Mom’s bedroom. Adam thought the dogs had bumped their water bowl, and I mentioned that it might be the toilet (because why not at this point?). It was the toilet 😑. When he was working on the bidet, he pinched the hose somehow when putting it back together and it snapped in two, so water was running continuously from the bidet onto the floor. He wanted me to see it, but I did not want to see it because I am pretty fed up with life right now, but I did the good wifely thing and took him a flashlight when he asked for one.
I don’t know which leprechaun I pissed off, but if you’re reading this, I am really sorry, and we are trying here. Really.
I bought the wrong size subfloor 🙄. Adam got the floor laid down in the tiny utility room but not nailed/secured because I have to get the right size. Since it’s a smaller room, I wanted to get , 2′ x 4′ boards instead of 4′ x 8′, so I searched for 23/32″ boards, which is what the rest of the house is, and bought them online without noting the thickness that showed up in the search results. The ones I got are maybe half that thickness and give when I walk on them. I looked up the size I bought, and they aren’t recommended for regular subfloor; more for attics. Certainly not in front of one of the main doors! I felt so stupid. For right now, he doubled what is down, and once again I have to avoid walking in there. It looks better than it did, though!
Adam is going to have to do some cutting and finagling so we have a floor instead of a bridge between the furnace and water tank houses, but since I got the incorrect subfloor, that isn’t something he can do now. To make my mistake even better, I wasted $79 for delivery. I’m sure I can find something to do with the boards, but I don’t know what yet.
I have been taking Phin out with me when I go out on the porch because he loves to eat grass and greenery, to the point that he will climb me if I have a flower in my hair (something I do when Adam brings me one). I put a small dog leash on him and attach it to the cable we have out there. He loves it a little too much and now nonchalantly walks out the door when I have it open to yell for the boys to come in. Luckily, since he can’t see, he doesn’t just take off and jump off the porch, so I have the time to step out and scoop him up before he gets too far. I have a knack for creating monsters 🤣🤣. He sits at the door and meows to be let out now, too.
A few days ago, I was lying in bed in Mom’s room watching TV, and I heard Phin meowing. I thought it was on my movie at first. I told Adam, so he started calling for Phin and looking for him, as Phin gets lost very frequently and cries until we find him or he follows our voice(s) to the room we’re in. Adam checked behind all the closed doors and outside. About the time I was thinking Phin could have climbed under the floor in the kitchen and was going to get up to help with the search, Adams walks into the bedroom holding a defeated-looking Phin and places him on my pillow. He’s a bit dusty and disoriented and sneezy. Indeed, he had climbed under the subfloor by way of one of the open spaces in the boards between the kitchen and utility room. Probably where the water pipes are near the furnace.
Adam said Phin came right to him when he heard him and he was able to lift him out. He was just down there walking around on the insulation 🙄. Adam covered the openings with our handy dandy coffee table top and a few other wood pieces from when he dismantled furniture I wanted to be rid of.
Phin was missing a day or two later, and the hunt was on again. Adam saw that the boys, Nev and Ollie, had messed up his patch job in the kitchen, and once more, Phin was down under the floor. It is going to be a nightmare when Adam replaces the subfloor in other parts of the house. I have some plastic covering set to buy for when that time comes, but I don’t know how well that will work on a determined, blind cat. Mom’s room is on the other end of the kitchen, so Phin trekked quite a ways under the floor for me to be able to hear him the first time.
I waited excitedly for an entire month after we switched to a tankless water heater to see how much it improved the water bill. It had been $80+ for years, and it was in the $60 range when Mom was alive. When the water bill finally came, I burst into tears. It was $405. For a month. To their credit, the water company lady had called us to say we had a leak a bit after the tankless was installed. However, I thought she was talking about the leak that was just fixed, so Adam told her it was taken care of. But, no…this was a different leak, and much worse. What are the chances? Seriously. Our latest readings were 13,000 gallons of water a month, compared to an average of 1,300 (which is still high for two people).
Since there was no water anywhere in or under the house, I asked the lady to send someone out to see if the leak’s on our end or theirs. She completely ignored me (which I should be used to) and let another month go by and another $400 bill come in. With that bill, she sent someone out and he had Adam turn the water off to the house and he watched the meter. The new leak is somewhere between the water shutoff outside our house by the porch and the meter, which is about 30 yards, give or take.
This new leak didn’t happen until we switched from the hot water tank to tankless, and I have no idea why. Adam didn’t bother anything underground, which is where the new leak is located. It is one heck of a coincidence.
I contacted the American Leak Detection place, and they are going to come find the leak with some equipment, but they cannot do that while it is raining, which it has been doing here since February. The guy is supposed to come next Saturday, God willing and the creek don’t rise…which, the creek is rising since it’s been raining for months on end. After that, Adam and I are going to get a crash course in plumbing because we certainly can’t afford to pay a plumber to fix an underground leak. The water bill is over $1,000 now since we’ve had to wait until we had the money for the leak detection guy, and I hate knowing that I have to pay that when I didn’t even get to enjoy all that water. The only silver lining I can see is that the ground should be fairly soft to dig in since it’s…well, mud.
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)!
Cari R Esta 