It’s been a long time. This year has been truly transformational. I’ve been reflecting lately on how every 14 years, like clockwork, my life seems to take a drastic turn. It doesn’t mean that catastrophes or life changes or having to learn different ways of navigating the world don’t pop up in between those 14 year intervals, but seriously, it’s uncanny how every 14th year so far, life has pulled the rug from beneath me and I am forced to reconsider the very foundation I’ve been standing on (whether it be steady or unstable).
First thing’s first, my health is still in limbo. I had a very rough winter dealing with new symptoms I was stumped for an answer as to why I was experiencing them. I’m used to the lower back and flank pain that comes with carrying around giant, cyst covered kidneys, but I had a sudden return of this terrible rib pain that wouldn’t go away no matter what I did. In the past I had been misdiagnosed as having pancreatitis (I didn’t) and then an actual liver cyst that was more noticable than the tiny little specks was blamed as the culprit for this last flare-up of pain. This time I was informed that my liver isn’t on the side I experience the pain and my doctor said to me, “I think that might actually be your kidney.”
Tests and scans determined that yes, my kidneys have grown. One that was always lagging behind in size has now caught up to the other and both of my kidneys are officially “double the size of a normal kidney” rather than “nearly double the size of normal kidneys”. As you can imagine, it’s painful. I’ve had to adjust. I’ve had to figure out once again what I can and cannot do in order to appease the cysts. I have had to reconfigure what I can and cannot eat and how frequently and how much I can consume in order to keep them as dormant as possible. There isn’t much I can do to slow or stop the progression that I’m not already doing, but for the time being I am okay and my issues are considered “non-emergency”, thus I have to wait until September to see a specialist who will only inform me (hopefully, unless things change before then) “I’m sorry, there isn’t much I can do at this time.”
When you have Polycystic Kidney Disease, and are only in Stage 1, it’s considered a blessing. It means that no matter how messed up those vital organs are, how ugly the cysts that cover them may be, how often the pain from them keeps you up at night, your kidneys are still functioning normally and that is all you can ask of them really. As long as they don’t interfere with the functioning of other organs and you main infection-free you are mostly going to be on your own to manage pain and figure out your own limitations since every case is different. I was diagnosed as a teen. I didn’t live with pain until I turned 25. By doctors’ standards, I’m doing “alright”.
I knew moving back up north was going to potentially cause me to have more migraines and seizures due to the fact that barometric pressure changes (among a plethora of other things) are triggers for these conditions for me. The first Spring here I got a taste of how that would be for me and I also learned what it was like to live with allergies so bad it makes it difficult to function. This year I was tired of headaches every day and I was also concerned of the possiblity of a brain aneurysm (for whatever reason PKD patients are more prone to getting these) since it had been many years since I had a peek in my brain to check for them so I also had a brain MRI. Thankfully, nothing new there. Just the “brain anomaly” that exists in my parietal lobe that is believed to be the origin point of my epilepsy being unchanged. Interestingly enough, I have seizures in both my parietal lobe AND my temporal lobe so it was a real challenge years ago to figure out what types of seizures I was having. They have changed recently. What they used to call “partial complex seizures” are now known as “focal seizures” and I now have excruciating pain in random limbs as part of my aura, which I’ve learned is actually the beginning of the seizure itself. Sometimes I remember this pain, sometimes I don’t, during the postictal phase, but let me tell you it HURTS. Sudden, stabbing, burning in one centralized spot that can knock me down even before the convulsions begin. Another way they have changed is that they last a bit longer than they used to and my recovery isn’t always a walk in the park. Most days I wake up feeling like I’m hungover or like someone has whacked me in the back of the head with a 2×4. I manage. I live to see another day.
My husband, Jackson, also had a health challenge himself and was out of work for an entire month and is thankfully feeling much better now. He has upcoming tests (which are unfortunately happening too late since he seems to be recovered now) but maybe, just maybe he can find some answers as to the mystery of why he gets these stomach flare-ups every few years. In the past when he had them, he was told that they simply “didn’t know” or it was blamed on another issue, like his pancreas divisum or the year he needed to have his gall bladder removed. But doctors seem to be stumped as to why it’s happening again now. We’re both doing our best during our physical and mental health challenges, because believe me, having to go through all this has caused serious stress and strain on the both of us, but I believe things are looking up.
As for writing, I’m back to cracking away at poetry and even writing little bits of a “novel idea” I’m toying with called “Project Pop Punk” for now. I had this crazy, cinematic dream about Patrick Stump from Fall Out Boy and it formed this story in my head that I thought would be cool to get out on paper. So, I’m trying. I don’t know what’s going to happen with it, but it’s being written s-l-o-w-l-y. It’s so difficult for me to write prose. I’m a poet. I’ve even heard poets shouldn’t write novels. I don’t agree with that, but I can see that it might be more difficult for some of us. I’m so dialogue heavy when I try to write short stories or anything prose. I’m trying to learn how to get better at that.
I have joined a weekly writing group and it’s been helping me. Just by showing up, I know I’m sitting there writing so that’s good. There’s not a lot of pressure in the group because we simply sit together and write quietly and if we choose to we can talk about how it went for us that day. Everyone is really nice and I think it helps to write in a new environment other than my apartment. I get a lot done during the 90 minute sessions each week I am able to attend. I have entered some poems into contests again this summer and have sent off other poems for publication to different magazines. I’m going to be polishing my chapbook after receiving a third rejection and that will be sent out again hopefully very soon. I’m also beginning to write and edit older works for a new collection as well. So, I’m busy in that department.
This brings me to an announcement. After much deliberation, I have decided to migrate to Substack. I have made a post about it HERE. I will cross-post here until my WordPress plan expires in March 2026 and will still keep a free plan here in order to archive the posts. The URL will change once that happens. I will still be reading WordPress blogs, but I will be sharing my writing in the new space. I hope to begin actively posting on Substack once a week beginning in the Fall. I have been a reader on Substack for a long time and the platform (so far) is going to cover all of my blog needs without the hassle of all the changes WordPress has made (and keeps making) that I don’t particularly care for. I feel it’s time to “get with the times” so to speak. I’ve heard wonderful things about writing on Substack and instead of “fighting the future” (X Files reference), I’ll jump on board and see what happens. Changes are difficult, but I think I’m getting better at making them. It’s not going to be an easy goodbye. I’ve been blogging on WordPress for forever, off and on. I thought about my blogging history when I decided to make this change as well. I remember starting out on Myspace, then making a Blogspot (which changed to Blogger), then even dabbling in LiveJournal and the lesser known DeadJournal. Then I joined WordPress and also had a dozen different Tumblr blogs based on my varying interests alongside that. I’ve even quit blogging before but it never lasted long. No, I feel as long as it exists it’s going to be a part of my life. I’m excited to see what happens in a new sphere. I hope you follow me and subscribe to my posts over there. You can get them in your email just like on WordPress and I don’t believe you have to have a Substack to read on Substack. I know many WordPress-ers who have already made the transition and they love it. And you’ll still see me liking your posts on here and commenting from time to time too. Here’s to new blogging beginnings!
The Fourth of July always feels like the halfway point of Summer even though the calendar says otherwise. Maybe that’s from school days, knowing I’d be returning to it at the end of August. Maybe it’s also because I’m back in Michigan where Summer is declared on June 1st and by the end of August it’s already feeling like Autumn sometimes. I’m not sure. Here we are almost to mid-July and I know I don’t have to wait long for my cooler temperatures to arrive. I’m not handling the heat waves we’ve been having very well, but AC is a godsend. Once again, I’m getting by. My patience wears thin more often, but I still have a lot of it. I will spend the rest of this summer devouring poetry books as I have been all year and sneaking novels in there too. I’m always reading a stack of things at one time and I know I’ll never get to it all, but I enjoy making the effort to.
I hope you have a wonderful rest of the Summer. See you on Substack! And be good to each other. This world seems to be lacking in goodness these days, but I know it’s there. Often times, you just have to be it.
Thistle Thoughts 
You’re going to make me create a substack account, huh? Challenge accepted!
I was really hoping your move would lead to an overall improvement. Fingers crossed that something can eventually be done to give you relief, if only that you have new eyes on the problem with new ideas.
I’m personally more than ready for summer to be done. I’m not a summer person at all.
If you need someone to beta your prose, you know where to find me.
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Thank you for the offer for the prose. I’ll hit you up when I actually feel I have something worth looking at haha
I will say that things HAVE improved greatly after moving here. The pain isn’t like it was in Vegas. I had neuropathy so bad there I couldn’t function and my kidneys were definitely strained in that intense heat. I have more good days here than I did there for sure. Seizures were lessened there, most likely due to steadier climate, and the fact that I never got out of the house so wasn’t as stimulated. So, pros & cons, I suppose. But I will say it’s better to suffer in a place you actually enjoy living in. Vegas never felt like home to me. This place is. So, even though I can’t do anything about the progression of this dumb disease no matter where I live, I will say that things are much better here than they were there. Also, I do enjoy being able to get out of the house from time to time. Spending so much time isolated wasn’t good for me mentally.
From what I hear “the literary renaissance is happening on Substack!” (according to this guy on youtube WriteConscious). haha
In all seriousness, I don’t like where WordPress is going. Plus, the spam and the bots really are getting ridiculous. Maybe the same thing can happen over there on Substack, but we’ll see. I think they have a good thing going right now. I’m not opposed to figuring something out in the future if I have to.
Yay for not being a summer person! I’m tired of feeling bad for it too. But then when people complain about the cold I can just think “well, you had your time” haha They don’t seem to feel bad about hating winter!
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Good on some improvements. Yay!
I’ll have to check out substack now that I have a reason to be there. I was skeptical when I looked into it before. I don’t care for the AI emphasis anywhere, and WP seems to be encouraging it to the point where I am tempted to unsubscribe from some folks I follow because they are obviously using AI to generate larger volumes of content. You can tell the difference and even the AI-generated images have lost their initial appeal. It was short-lived anyway, but things look and read more phony lately and I there are times that the ick factor hits me and I just want to stop.
I don’t feel bad for liking colder weather. I laugh whenever anyone complains — it’s like, really? You live in Minnesota and complain about sub-50-degree weather? Tell me again why you choose to live here…
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I don’t support the use of AI how it’s being used at all. To truly use it as a “tool” like you would a dictionary or thesaurus is totally fine. But using it to “produce your content” sickens me. And as the wife of an artist/photographer I do not support the use of AI art to enhance a blog post. There are plenty of fair use photos & art taken & created by humans for this purpose. I don’t feel that we writers should be neglecting our artist comrades like that. I truly feel we need to stick together on this. People might not agree with me, but I just can’t support the use of it like that. People say they can tell now when it’s being used, but it’s going to get better & when that happens I don’t think anyone will be able to tell. And that whole thing removes human purpose. Mental health issues are bad now, imagine when there is no use for artists or writers at all anymore. That’s devastating to me. I’m glad people are willing to fight this because I see a lot of people ignoring it or just not caring if what they see, read, or listen to was created solely by a machine. I find it rather frightening, honestly.
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It’s all enshittification of the arts. And then, people will wonder why nothing sounds, reads or looks like it has soul eventually, and we will point to the lazy use of AI for content generation as the root cause.
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Sorry to read about your health issues Jennifer. Your ability to withstand all this is admirable. I will be reading your work on Substack. Best wishes!
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Thank you, Dominic! Please let me know if you write over there too.
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My pleasure Jennifer! Sure, will let you know if I write on Substack!
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I liked your post, though it’s hard to like news that mixes both pain and hope. I celebrate the hope, and I’m praying for your health. your poetic heart will always find a way to persevere.
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Thank you! I do have hope that I can move past any hurdles, just that I might have to move differently afterwards.
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This truly worries me:
“There isn’t much I can do to slow or stop the progression that I’m not already doing, but for the time being I am okay and my issues are considered “non-emergency”, thus I have to wait until September to see a specialist who will only inform me (hopefully, unless things change before then) “I’m sorry, there isn’t much I can do at this time.”’
For obvious reasons. But I’ll mention the main one: I wish there was something that can be done, and I really hope something can actually be done and they do it soon!
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There’s no cure for PKD unfortunately, only treatment when the kidneys are actually in end stage renal. It’s a good thing I’m not there yet, but I really feel that the phrase “quality of life” doesn’t mean much anymore. Most of us in the big kidney club live in pain & “waiting for them to fail” so we can get on transplant lists. As long as the organs work, how big & painful they are isn’t an issue… Well, until it is… according to the medical community. There is a medication that “MAY slow progression over a ten year period”, with the extremely dangerous risk of very quick liver or kidney failure. It’s not a gamble I’m willing to take because I’d rather prolong the time I’m off of dialysis than speed up that process. Diets can help “low carb, no sugar” and some have had success with plant based keto (we’re supposed to watch our protein intake) because cysts seem to feed on carbs & sugar. So that can help pain so maybe they’ll not grow so much, I’ve noticed a little difference since that diet, but I’m not noticing cyst or overall kidney size shrinkage or anything.
What would be wonderful is if the crispr method I’ve been reading about could be studied and approved. Since PKD is due to a gene (most cases hereditary, a low percentage mutant), removing that gene would cure the patient. If it works I suppose. I hate saying it, but they make money off of us remaining ill & needing dialysis and transplants. So it makes me feel I’ll never see a cure in my lifetime, but I really hope I’m wrong. Sorry for that long reply 🩷 Thank you for reading and sending hope along. We all need more of that. I hope you’re doing well, Tre. 🙏
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“They” make money off anyone with significant illnesses, which leads me to believe something can actually be done, “they” just don’t want to do it. 🥺🥺🥺
And I hope you’ll get to see a cure for it during your lifetime. I truly do.
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I hope so too. I think you know more than most of a lot of the horrors of the medical field working within it. I’m glad there are people like you within the system. And there are doctors who do care. Hopefully a change can happen eventually.
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Amen to that. Hopefully, it can. 🙏🏾🩵
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You know I’ll follow your writing (and updates) wherever you go! Hoping always for relief and ease for you and Jackson both, and hail to cooler weather when it comes! I was walking under the neighborhood sugar maple who always turns first, and I swore I could feel its true color wanting to bust out already. Not rushing that, quite; I haven’t had my fill of the bats and fireflies.
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I’m seeing so many fireflies this year after reading that this is the last generation that will see them? I’m not sure if they’re telling me they’re not going anywhere, or if it’s a goodbye. Jackson & I are both improving a lot. We’ve both learned to take it easy & are being kinder to ourselves. I hope you enjoy the rest of summer! 💜
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Godz Jennifer you deal with so much and still find the time to read my stuff. I don’t know how you do it. Your perseverance is truly inspiring. I love words and I feel like any way you want to arrange them is wonderful. If you ever want to share your prose I would love to read it. Til then I’ll make do with your wonderful poetry. I hope the rest of your summer is amazing.
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The majority of my time is spent reading & writing & I wouldn’t have it any other way. 🙂 Sometimes when you’re stuck in bed, that’s all you can do. If I get something worth sharing, I will. I keep trying this novel thing but then I end up staring at the screen & then writing poetry drafts. I’m kinda hopeless… 😀 I hope you have a good summer as well.
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Well just keep on being you, kinda hopeless and all
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