I've been struggling to figure out what to write here this week. The weekend was mostly uneventful as I worked all day Saturday and spent most of Sunday just catching up on things, and life has otherwise just been...a struggle. I'll get into that momentarily. But on Sunday I wanted to get as much of the timely stuff done as I could because I'm planning to be gone next weekend and know that anything that didn't get done might be waiting, and in some cases that wasn't ideal. For example, some bushes needed trimming and who knows what the weather might be like two weekends from now. I wanted to go to the pumpkin farm--not our big Stokoe day, although that would have been good aside from Craig and Jacob having injuries holding them back--but the one where I get my porch pumpkins, because otherwise we'd be halfway through October by the time I went. I also want to get my Halloween decorations up this week sometime. I usually put up fall first, but then I'm dragging the bin back up 10 days later for Halloween. It's probably a waste of time to get one setup done for fall and then have to rearrange for the Halloween stuff, but mid-September feels too early for witches and jack o'lanterns, you know? Anyway, I got done what I could...but still more on the list to tackle this week.
Sunday night ended up a bit more eventful than planned because just as I was sitting down to catch up on work that needed to happen by Monday morning, one of our lamps started flickering. I thought maybe the bulb was going, but it went back on. But then it happened again and eventually went out, and as I was going to get the bulb, I realized the lamp next to it was out, too. The boys mentioned that it did that earlier when I was outside trimming the bushes, and then I flashed back to when I was at the outside outlet plugging and unplugging the trimmer and I swore it made a cracking noise a couple times--much like I'd expect from a spark, but no spark. I thought maybe it was just the creaky cover hinge. After a bit of back and forth to another outlet we realized the lamps were indeed fine but the outlet was not. Then we noticed the porch light was acting weird when switches were getting flipped, and the switch that turns on the fans was wonky for a bit and then worked, almost like all of the flipping of switches was allowing other things to turn on and off. It was so strange. Of course I mildly panicked (I wasn't in the best mental state anyway--again, more on that in a minute) because fire is such a fear of mine. And honestly, with everything that just happened down south (including in Asheville where my aunt and uncle live) with Hurricane Helene, people losing their homes to disaster has been top of mind and it scared me to death. We unplugged things from that outlet and had an otherwise uneventful evening (aside from the awful Bills loss) before turning off that breaker before bed. Luckily the electrician was able to fit us in late Monday morning, and it turned out the outside outlet was shot. That didn't surprise me as it's not one of those GFCI outlets with the reset button, so it isn't exactly ideal to be out in the elements even with little outlet flaps. Eventually it just sort of corroded and the connection loosened (I think maybe the neutral, he said?) and because it was earlier in the circuit based on where the electricity comes from, it was disrupting the other areas further down, which was why everything was flickering. So he just had to fix that one and everything else was fine. That was a huge relief. Yeah, it was $300, but better than wiring damage or worse.
Oddly I guess it was helpful to have something else to worry about for 14 hours, because honestly, my full time job lately seems to be worrying about Jacob. It is exhausting and we don't even any official diagnosis. It's been more of the same for three months now...just a constant cycle of stuff. It started with a virus, various lingering symptoms, and then new things have come and gone (or stayed). Along the way it was complicated by the concussion, two more viruses, and then a sprained ankle last week. He just hasn't been right since the first cold virus in June the week before we went to the Dominican. The elevated blood pressure, which seems mostly better...the sudden reflux...chest pains, which apparently weren't heart-related...stomach pains that come and go, even after he figured out he glutened himself...the lymph node, which is currently down a bit...another cold virus...the epididymitis, which is officially better...his shin that still isn't where he wants it to be...another cold virus a couple weeks ago...random aches and pains, mostly in his back and then his chest again. It's all getting really concerning that he never feels particularly well. And with everything it's hard to tell what his baseline should be, since he hasn't been able to fully train at a high level for any extended period of time since the spring. Should he get tired doing what he's doing? Is he short of breath or is he just a little out of shape compared to what he's used to? He just hasn't been able to get in a groove so it's hard to know what's normal and what should be concerning. But some days the stomach pains and aches are bad, and it scares me. My friend just died of stomach cancer after complaining of back pain, so that's stuck in the back of my mind. Jacob already has Celiac working against him, and it's just hard to know what other complications might arise because he already has one autoimmune disease. Not to mention that stress seems to be a factor. It wouldn't surprise me if it ramped up as we were getting ready to leave for our trip in June, and then the constant stream of ailments has just kept it going. We wonder if taking ibuprofen for his injuries irritated his stomach and then combined with the stress to cause ulcers. Does he have a new lactose intolerance? Might it be a bacteria overgrowth, as he thinks "things" have been smelling worse? Could it be diverticulitis or maybe IBS (although I don't think he's had IBS-type #2 issues, that I know of)? He insists we have black mold in the house because that would explain everything, but it's not super likely as we haven't really seen (or smelled) any signs anywhere.
We bugged the doctor again and did another round of blood work and everything looked good, although all that it really rules out is lymphoma (which he was worried about with the lymph node) and pancreatitis. His Celiac levels were perfect, so that was good but doesn't give us any clues. We have a GI appointment on Friday, which should at least start the ball rolling on some sort of investigation there. Ultimately every day is a battle to not get particularly triggered, whether it's by something he says, like when his pain is worse, or something I accidentally come across online, like people who realized their reflux was a cancer sign or the athlete whose body wasn't fighting off illness or injury properly and had bowel cancer. I see those things and the worry starts all over again at a very high level. It's like a constant fight-or-flight response, and it's exhausting. And I know from reading posts from an old friend of mine whose daughter has leukemia (not to mention all the other cancer parents I know, half with living kids and half without) how draining it is to literally be in the fight for their life for months or years on end. To be in this heightened state constantly is draining. I don't know how I could do it long-term, let alone the worst-case scenarios beyond that, but part of me is terrified I'll have to.
Mentally I catch myself doing things or making alternate plans or assuming what things will have to change. All the what ifs come pouring in and I'm having trouble stopping them. Jacob desperately wants to plan a trip to Disney in May and I keep hesitating. I mean, it's a bad month at work, Craig might have playoffs, and the kids have school, but it's really the best time to go for weather and cost issues...but what might our lives look like by then? Would it be worse to plan and not be able to go? For me, the answer is yes, but for him the planning feels like a lifeline. But if there is something wrong we can't outrun it with vacation. And yes, if something is wrong obviously a trip to Disney will happen as soon as it's medically possible, but planning a trip just seems foolish until we get this figured out.
I mostly feel like one day we'll have no choice but to have some life-changing ER visit when he can't take it anymore, and everything will change forever from that point on. That could happen as soon as tomorrow at this point, because mentally it's gotten bad and physically he's just endlessly frustrated. I have seen that life-altering scenario play out more than once through friends, and the one in particular has been very open about how draining this process is. With all that in mind, my poker face is terrible right now, which drives Jacob and Craig nuts, but I literally can't help it. It's such a deep, biologic reaction based on everything I know. I want to think this is just anxiety talking--like almost every other time I've ever thought something was wrong with me or them--but the reality is that I've overthought this so deeply and just have that awful mother's intuition that something simply isn't right. Something has to be causing all of this and it's probably not good. Even if it's not cancer it could be another chronic condition. I routinely try to talk myself back out of it--he hasn't gotten truly sick (like nausea or more intense pain or a visible tumor or severe fatigue or major weight loss) so maybe there's just a bunch of little explanations for everything. But then he mentions he's lost a couple pounds or he's extra tired today or the back pain or stomach pain is worse, and I start all over again, even if there are logical reasons for those things--like less weight training causing loss of muscle, or staying up late, or sleeping in a weird position, or being out of alignment. It's this constant cycle which seems to intensify after every virus, and the mental weight is nearly unbearable even at this stage. I'm jittery, I have a nervous stomach, sometimes I have no appetite, I'm often distracted, and sometimes all I can do is stare at my phone because I don't have the mental energy for anything else. And truly, this has been coming in waves since June, for both kids. Carter's situation seems fine now, although we still should get that Celiac test done. His mouth seems pretty much healed up, and we never really knew what it was. But to have moments of thinking both kids have some form of cancer, multiple times over the last three months, makes me feel like I'm a crazy person. That's hypochondriac, overactive anxiety stuff, right? But these situations have been verifiably super weird and concerning and essentially without explanation, so I don't think that's fair in this case. I do need to get help with it, but at the moment I guess I want to see if it's just going to be working through overabundant, unfounded anxiety or actually needing help with something more real. To even talk like this seems overly dramatic, but when your otherwise healthy-ish teenager just can't get out of the weeds after three months, something has to be up.
I'm mostly just trying to go into robot mode half the time, pounding through work with whatever concentration I have, getting through dinner, and trying to immerse myself in something brainless at night. I focus on to-do lists to feel like I'm making progress, which is good, but inevitably my brain wanders off to how I will get things like that done if he's sick. Almost every time he talks I get nervous it will be about another health issue. When I hear him and Carter bantering back and forth, I start worrying about what how I would ever cope if that scenario was no longer possible. I'm simply traumatized at this point, without even knowing what's happening.
I know it's driving him nuts too, and whenever he accuses us of not helping him I try to explain that we have been doing a lot--so many doctors and therapies and questions--and this system just isn't meant for young people with health problems. You can't just walk into the ER demanding things (although apparently we're at that point) so you have to go through the system a bit and hope that there will be answers there before it gets to an extreme point. In this case there haven't been, and yes, it's getting extremely hard. I know it probably bothers him every moment of every day too, and while he knows it's hard for us, I don't think he understands just how hard. He is a part of me--if you believe that science, we even share cells--and it guts me to the core to think of anything ever happening to him or him having to go through more pain. The saying "A mother is only as happy as her saddest child" couldn't be more true, and knowing these past three months that he was almost constantly having issues (and if he wasn't for brief times, Carter was) has been so hard. I think of how hard it has been to come back from the stress response of COVID, and this is already exponentially worse.
I just don't feel like I know how to help him or even how to be a good parent to him anymore, because my stress is affecting him. He says that he doesn't feel pain when he's working out or playing basketball (or even watching it while he's been injured), so he thinks that a lot of it is stress. I think there could be some adrenaline there assisting things, even if he's not participating, but trust me, I wish more than anything it was just that. Admittedly, he does have stress at school because he's unhappy there, and I give him stress at home, and I know he's frustrated with just wanting to be back to where he was physically so that probably isn't helping the rest of the time. But I think there's too much physical pain for it to just be that. I want him to be magically cured more than anybody, but the longer this has gone, the less likely that seems. This horrible limbo is bad enough, but I know the alternative could be endlessly worse. I keep hoping and praying for a resolution of his symptoms and good news with every test, but I am scared. More than ever before in my entire parenthood journey. Terrified and heartbroken and at a complete loss.
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