Scary Health Stuff, and Catching Up

Hi everyone,

It’s been a bit since I have posted here, and that’s not for lack of wanting to, it’s simply down to my health having been quite the challenge of late. I am doing my best to rally, if possible, and trying to hold it together. That is often a lot easier said than done. As a result, this may be a rather lengthy one, so buckle up…

I’ve been to the emergency room twice in two weeks for very bad pain in my right flank area. I have complained of this flank pain (and back pain) off and on in various visits over the past couple of months, actually… but because I also had accompanying spells of heart palpitations and/or high blood pressure, I kept being told “You just have anxiety. You’re fine.” Two weeks ago they said I had a UTI, so they put me on antibiotics. It wasn’t getting any better (worse, in fact), so they said “The infection is still there but looks a little better… just take more antibiotics.” They sent me home with the equivalent of a pat on the head and a “Go see your doctor” (meaning my primary care/GP doc). So on Wednesday of this past week, I went.

For the past two weeks, I have been on these antibiotics… and there has been no change. None. My doctor ran a urinalysis that showed the infection was gone… but there was a trace of blood in the urine. I froze with actual fear when the doctor told me that, and for good reason…

I don’t talk about it a lot on here in light of all the other health stuff I have to deal with with the multiple autoimmune diseases, etc…, but I am a kidney cancer survivor. I had it in 2009, and in December of that year, I had part of my left kidney removed. They caught it early, and I never had to have chemo or radiation or anything like that, thankfully… which is good, because the surgery was brutal enough! I had about a foot-long (or more) incision, cutting me from stem to stern (front to back, around my left side), so to speak… so they could lift out the kidney, cut out the bad part, stitch up the remaining kidney, and put it back in. They cut through all of those “core” muscles across the abdomen area, so you can imagine what the recovery was like from that. I couldn’t even get myself up from the bed without help for weeks! I had to sleep in a recliner chair to make it easier to get up to go to the toilet. My poor Dad was having to wait on me hand and foot. I was in excruciating pain for weeks. The recovery took well over a year. It was tough, man… super tough.

So on Wednesday, when my doctor told me there was a trace of blood, but no more UTI, I naturally panicked. Once you’ve had cancer, you sort of become a lifelong member of a club that no one willingly signs up for – especially if you survive it. For those club members, there exists a new phase of life where one is constantly looking over their shoulder to see if the demon cancer is lurking in the shadows – waiting to attack again. On Wednesday afternoon, I had flashbacks to my hospital experience when I had my surgery. The surgery was done in a tiny, somewhat archaic rural-ish hospital close to where I live in Northwest Georgia. It wasn’t the best place for me to be, but I had no insurance and it was the only one that would even take me (true story). I was supposed to have an epidural to last me a couple of days post-surgery for the pain, but around midnight the night after my surgery, a bumbling, rather impatient nurse decided to scoot me up in the bed (I had slid down too much for her liking) by herself as opposed to getting help… and she yanked the silly thing out. There I was in the wee hours of the morning – SCREAMING a blood-curdling, neverending scream because I had no pain block/pain relief whatsoever. They had to wake up the only anesthesiologist they had on tap… who wasn’t even on the premises… so it was close to 5 or 6 in the morning before I ever got relief. They finally hooked me up to a morphine pump. It was awful. I stayed looped out of my head on morphine for over a week, I think – I was in the hospital for about 8-10 days, if memory serves. I was then sent home with heavy narcotics as well.

All of those memories, which I had tried desperately to block, came bubbling back to the surface as I tried to hold myself together while the doctor told me that he was going to send me for a scan to see what was up. He did say there was a possibility that it was a kidney stone that had become lodged or something… but I have had kidney stones before, and that pain has always been different. They set up the scan at a nearby imaging facility and I had that done yesterday (Friday). Of course, before getting the scan, they wanted me to cough up $200+ cash (that is AFTER the insurance bit, mind you… the whole thing was well over $1000). I don’t have any extra cash. Every penny goes to housing, utilities, food, meds… I have a DEFICIT each month… not a surplus… I tried to explain this to them, and they said the only thing they could accept was $40 cash upfront and for me to sign an agreement saying I still owed the rest and would have to make payments. My friend Ford was there, and he thankfully offered to cover that for me. Had he not been there, I would have had to leave and just not have the scan done at all.

Once again, my mind and heart begin to worry for those people out there who DO NOT have people in their lives who can swoop in and help with things like this. What then? I asked the lady that very question, and she said a lot of people just have to leave and not get things done. THIS IS HEALTHCARE IN AMERICA, PEOPLE!!!!

I was VERY fortunate to have my friend there to help me. I weep for the people who do not have that luxury and who have to forego potentially life-saving healthcare because of a lack of ability to pay. It’s ridiculous in a country with this much wealth. WHY is our healthcare so expensive? And WHY do we not have a National Healthcare System in 2024? Greed. Nothing but. Anyway… I digress…

So I was able to have the scan, and now… I wait. It’s a weekend now, so I know I won’t hear anything for a few days. The results have to be read by a doctor and then related to my doctor who will then have to let me know what they find.

I am going to try and distract myself if I can. I have a student that I am to start tutoring on Monday, so I need to put the finishing touches on his lesson plans. All the while, mind you, I am still in pain. My pain levels pretty much dictate what I can and cannot do. Alongside the pain, I am very shaky/trembly, and I am also dealing with a lack of appetite and intermittent nausea. That’s always fun. I haven’t eaten super well in the past week, (I haven’t deviated from the protocol, but just haven’t eaten enough food at all) but I did break down during a period of temporary pain respite yesterday afternoon and I made myself a decent little dinner. I threw a small chicken thigh in a pan with some spinach, mushrooms, onion, and carrots. I managed to get it all down, which was probably a very good thing. I had a lovely video call from my besties back in the UK after dinner as well, so that was super good medicine for me. Lots of laughter, as always. They’re aces. I really miss them. My heart will always live in Greenwich, London, UK.

Ford has been my rock. He’s sacrificed his time for the better part of this week to take me to appointments (both medical and physical therapy) and he just set up camp, so to speak, in my office, and worked from my house. Thankfully he has a job where he can work remotely! It has been so lovely having him here, working at his little makeshift desk (a foldable card table that he sets up when he’s here to put his laptop and accessories on) – even if I am in another room or if I have to lie down for a little while… it’s just nice knowing someone is here. I miss that. I have never been a good “all alone” person. Sure, I like to have time to myself… like reading or watching TV or something… but I don’t fancy being COMPLETELY alone all the time. Having someone else around, even if they are in another room of the house, to me, is so comforting. I’ve noticed my anxiety levels are a lot lower when I am not all alone for extended periods, too. I guess that makes sense. I guess it also makes sense as to why I am sometimes able to relieve my anxiety a little bit by going outside onto the driveway for long stretches in my wheelchair… I can feel the air on my skin. I can see up to the main road from there and I can watch the cars passing by. I suppose it makes me feel “less isolated”. A bit sad? Maybe. But (here’s that phrase I hate) – “It is what it is.” We do what we must to get through each day – hour by hour, minute by minute.

So now… I am faced with a weekend here on my own, trying to fill the hours that I’m awake with things that will distract my panicked mind.

I will need to finish up those lesson plans, but that really shouldn’t take long. After that? Well, I will be at the mercy of my pain. I had wanted to do a bit of gluten/grain-free, Wahls protocol-friendly baking over the holidays and never could because I didn’t feel up to it. I still don’t… but I have ingredients that will spoil in a few weeks if I don’t use them. I had planned to make some julekake bread, as well as a lovely kranskake. I’ve been embracing the Scandinavian part of my heritage a lot in recent years, both with language learning and with cooking. I used to order a kranskake online for me and Dad every Christmas, but have not been able to afford to do so in a long time. They are quite expensive, and for good reason – they are a lot of work! LOL! I have the rings/baking molds and all of the ingredients, and I would just like to give it a go to see if I can do it. I don’t think it will happen this weekend though… that will take me having a LOT more strength than I currently have. I might get away with whipping up a couple of loaves of julekake bread. That task, though, would also be easier if I had more strength. It’d be so much better for me if I had a little stand mixer of some sort with a dough hook on it. I don’t. All I have is a puny little hand mixer… lol… not exactly what you need for kneading dough. Haha! Talk about the wrong tool for the job! No, I am stuck to kneading my dough by hand. *sigh* That’s gonna take some doing…

So… the jury is still out as to how I will spend my time while waiting for “news” from the medical battlefront.

I need to do laundry, but do I feel like it? Nope. I still have my Christmas stuff up, but do I feel like taking it all down? Nope. I have a lot of other little “tasks” around the house that need to be done, but I’ve not felt up to doing them in ages. I wish I had a bit of help with things like that, but… that’s not my reality. My true reality is that if anyone ever showed up to my house, they would find a rather dusty place, with lots of cobwebs dangling from ceilings and walls, mold and mildew all over the front and back porches, and floors in desperate need of a good vacuum. Once again (and as much as I detest this phrase…) – “It is what it is.” I spot clean behind myself in the kitchen as I make my meals. I keep the towels and toilet roll changed in the bathroom, and the counters wiped (mostly). Outside of that, things are rather out of my scope.

Our weather is supposed to turn off quite cold next week. It has been a little colder than usual here this winter already. I’ve been forced to run the space heaters a lot more. My central heat does not work, and even if it did, I don’t think I could afford to run it. I use space heaters in the individual rooms and don’t run them when I am not in them (except downstairs because the birdies need to be warm!) I believe they call that “zone heating?” Whatever the case, colder weather means sky-high electric bills for me. Not ideal. I LOVE cold weather, myself… (my Scandi genes are showing themselves again) but… I need to be able to keep my house warm, both for my birdies and to prevent the pipes from freezing. Once again, we’re at that less-than-beloved phrase – “It is what it is.“

As for the YouTube channel, believe it or not, I have filmed bits here and there for an upcoming episode. I may even have enough for a full one, but I am still looking for background music, etc… I could easily work on that this weekend if my attention span allows – i.e. if I can keep my focus on it, and stop myself from going to the “dark” places I am wont to go at the moment. I am so thankful for the new equipment and have been enjoying seeing how various bits work and learning more and more. I’m sure my first few videos may be a little rough around the edges, but I am confident that I will be able to improve as time progresses.

…Provided I am blessed with more time. (Ugh… see what I mean about the dark places?)

So for now, it is nearly 8:00 am on a Saturday and I am still in bed, in my pajamas, with a beloved YouTube video I have seen a million times running in the background… By the way, if you love the outdoors (like me), and you have mental health struggles (like me) or a loved one with them, go and check out Abbie Barnes on YouTube. Their documentaries are so comforting to me. Abbie is funny, adorable, quirky, genuine, and knowledgeable. The videos not only have footage of a person hiking all over beautiful places in the world (though there is plenty of that) but they also contain this very engaging human host/narrator providing some interesting history of these various places, as well as enlightening their viewers about safety, self-care, gear, and all sorts of other things. It’s also a pretty great example of someone who suffers from sometimes debilitating mental health issues who is STILL OUT THERE… fighting… and giving life a go, doing one of the things they love most in this world! Abbie is a warrior, and super insightful – I truly enjoy their videos.

Okay, I have rambled enough. Time to get up, get dressed, and try to make my way downstairs to feed some little birdies… wish me luck… (in so many ways, if you don’t mind).