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Monday, September 30, 2024

The Saga of the Chronic Kidney Disease... oh and the Mysterious Abdominal Pain (Part 5 - September 2024)

If you've missed any parts of this saga, you can catch up with the links below:
Part 1 (April & May)
Part 2 (June)
Part 3 (July)
Part 4 (August)

Well, it's the end of another month... 

When we last chatted, Hubby was stuck at home on Leave because Home Office sucks and can't get their paperwork done in a timely fashion (all while demanding that we get our paperwork done in a timely fashion). 

No, I'm not frustrated, what makes you say that?

Anyway, he went back to work on September 7th and was then waylaid with nasty vomiting and gastrointestinal problems again. He was able to do a few more days at work the following week, and then two more days the week after that. 

On September 22nd he woke up with knee pain, leg pain, and a swollen knee, which - of course - led to more time away from work. 

On September 25th, I took the entire day off for a few different doctor's appointments. I had to come back to Woman's Imaging for a left breast ultrasound, and under the advisement of the scheduler, they said that there would be plenty of time for me to get this done and have time to go to the next building for Hubby's GE Consult. Yeah, that didn't happen. They were already running late when we got there, and once I was up on the table there was a lot of Hmmming being done. They were interested in an odd-shaped area near a lymph node. The Tech took a bunch of photos and then called in the Radiologist, who also did a lot of Hmmming, and declared it a regular ol' cyst. I won't lie... I had a few minutes of oh shit, is this really happening? While the Tech went to go get the Radiologist, I'd texted Hubby that I was running late, and that he should go over to his appointment so he didn't miss it. When I was fully dressed and went back to the lobby, he was sitting there waiting for me. As we walked over to the other building, he said that there was no way in hell he was going to leave, because he didn't know if I was going to come out of there with bad news, and he wanted to be by my side. Awww, but still...

Because of the too-long appointment, we were too late for his GE consult, but we were able to reschedule it for later in the day after the appointment with Dr. L. So we went home and I had some time to decompress from the "near-miss" of the morning. 

The visit with Dr. L revealed that hubby's protein and creatinine were both still too high. She changed his diruetic from Chlorthalidone to Spironolactone, which may be better for his kidneys. Even better, though, is that she reached out to a company called Natera and secure a full gene panel test for us for free! These tests are usually around $1000! She's hoping that maybe whatever's causing Hubby's problems are genetic and can be dealt with, because if not, the next step is a Kidney Biopsy, and Hubby absolutely pushed back on the idea of that. I'll have to work on him... we can't just watch his kidneys get worse and worse and not know why. Again, he was told to watch his diet and blood pressure, and return in mid-October after the genetic test and a round of labs. 

Well, there was no time to eat lunch at this point (unless we ate it in the car, and who wants to do that), so we went over to the GE appointment (remember, this is in relation to the Left Lower Quadrant pain, not the Kidney issue). As expected, the doctor has no magical diagnosis for us. Every question she asked was a dead-end. The only suggestion she had was to go do an x-ray to look for any possible bowel blockages, but she surmised that whatever is causing his pain my be due to abdominal wall issues (i.e. muscles, not intestines), and not her body parts to treat. She suggested using capsaicin or lidocaine pain reliever creams, or heating pads to treat the pain when he has a flare up. She seemed to ramble a lot as she spoke, but I think it was because she didn't have any definitive answers for us and she felt bad; we told her it was okay, that we didn't expect her to pull anything out of a hat, and that seemed to get her to stop rambling. We shared with her that he'd already had a coloscopy, as well as an Ultrasound, a CT Scan, and an MRI, and she asked that I send those reports over to her (I did that a few days later). 

Over an extremely late lunch at Culver's, we had a lot to talk over, and I said that it might be time to stop the LLQ wild goose chase and just learn how to deal with it. He hasn't had a pain flare-up in a few weeks, and knock on wood, maybe they're gone... He agreed that he wanted to stop, because he saw how it was affecting me... I worry about him, I worry about money, I have to take time off of work, I'm not taking care of myself, it's all so overwhelming. I said that it's better that we focus our time on taking care of his Chronic Kidney Disease, get that under control, and deal with whatever random pain may come. I made a mental note to pick up some pain cream next time I went to Walmart. 

Oh, and to add to the stress? I got a text message from work telling me that our offices would be closed starting September 26th because of Hurricane Helene, and would also be closed the next day as well. And y'all know me... I hate hurricanes! 

On September 30, we went and did the Natera genetic testing, which was amazingly simple! Just a single tube blood draw, done by an amazingly charismatic nurse. Again, Dr. L swears that this will be free to us, but I'm interested to see if they'll even try to bill our insurance or not... 

So, that's where we are. We may never know what caused - or is causing - this mysterious abdomen pain. But it's too frustrating to keep trying to find a cause. It's time to put all of our attention on him getting healthier and taking care of his kidneys. Here's hoping Hurricane Helene leaves us alone, too!

Saturday, September 28, 2024

Cancelled Conference & the Terrible, Horrible, No Good, Very Bad Hurricane Helene

I have been a Floridian my entire life, so hurricanes are nothing new to me, but twenty years ago, I lived through The Four in '04, which drastically changed how I feel about hurricanes (I hate them now). Back then, Charley came in early August and did a lot of damage in South Florida. Then we got Frances on September 5th that did a number on the whole state, really, and the first one that did some damage to our area of North Central Florida. Ivan was next, making landfall two weeks later in the FL the peninsula. And exactly three weeks after Frances, Jeanne made landfall on September 25th. 

The Four in '04 will never be forgotten
Those Yellow and Cyan tracks messed me all up
Frances did a lot of damage to my city, but it was Jeanne that took it to a whole new level of suck - the ground was so wet because all the prior storms, many of our gorgeous Oak trees just couldn't stand up against the winds that Jeanne brought with her, and they just toppled over, pulling their roots right out of the ground. An old story from the local paper said that they estimated almost half a million cubic yards of tree trunks and debris was collected after the storms. 

I will never forget the sound of hearing a tree (that straddled both mine and my neighbor's backyard) ripping out of the ground and falling over... It was so loud and foreign to us that we thought a tornado was coming, and we clambered into the hallway with couch cushions over our head, awaiting the impending devastation. Instead we heard this massive thud at the same time the power went out. We stayed there for a few minutes until we felt it was safe (no noises, no train sounds) then climbed out and turned on flashlights. We didn't see anything out the front windows, and when I looked out the bedroom window to the backyard... all I saw was tree bark. No sky. No stars. No ground. Just tree bark. The next morning, when we could inspect the backyard during the daylight, we could see that this tree, probably bigger around than a minivan, fell from my neighbor's yard, across our backyard, with the canopy resting in my other neighbor's yard, tangled in power lines, missing everyone's homes by less than a foot. 

Because of the tree canopy entwined with the power lines, our entire neighborhood was without power for almost a week. Florida in September is no joke with no AC! We slept in the living room with the windows open at night to keep cool, went to local restaurants and bookstores to keep cool in the day. We lost thousands of dollars worth of food in our fridge and freezers. And we learned a lot about Storm Preparedness. 

Photo courtesy of The Gainesville Sun archives
(Photo to show devastation - this isn't my yard)
Anyway, the point of this little flashback is to say that I. Hate. Hurricanes. My PTSD is off the charts anytime one is coming our way. And lawd, Helene was a big one. 

For the past few weeks, I'd been looking forward to attending a work conference in Orlando. My employer had paid for three nights' stay at the conference hotel. Hubby was gonna come along for a 'mini-vacation' - kind of a get away from all this bullshit we've been dealing with thing. 

I had taken off September 25th since Hubby had a few doctor's appointments, so I wasn't checking my work email that day. I'd been watching the weather to see what Helene was going to do, but it wasn't on my radar yet as something to worry about. Blissfully unaware of a message in my inbox, stating that the conference had been cancelled. Made sense, of course, since it was a conference of Florida-specific attendees who would be more useful to their communities during a storm than attending a conference. But still... wah! You guys ruined my vacation! I can hear Weird Al's song Why Does This Always Happen to Me? playing in my head right now...

 
Before we left for his follow up with Dr. L, I got a text from work that said we'd be closed starting at noon on Wednesday, through the end of the day on Thursday. Okay. That's great, but that's not good... That means shit may be hitting the fan soon. 

We went to his doctor's appointments, as planned, then came home and did storm prep, including:
  • Charging all the things (laptops, phones, tablets, battery backups, etc)
  • Filling multiple large containers with water and freezing (will keep freezers colder longer, if the power goes out)
  • Putting all the batteries and flashlights in a centrally convenient place (the living room table)
  • Washing the dishes (just in case the water goes out or a lift station goes offline after the storm)
And once all that was done, all I could do was be perpetually online. Wednesday night was okay; I tried to get as much sleep as possible because I knew that Thursday night was gonna suck. 

On Thursday, my boss called me to check in on me, to let me know that the office would also be closed on Friday, and to tell me that the conference was cancelled. Again, I'm not mad that it was cancelled, I'm just bummed at the loss of a mini-vacation, basically on my employer's dime. I shared that info with Hubby and he agreed that it was a bummer, especially because he'd already put in, and been approved for, the time off! We kicked around the idea of going... somewhere... but never really solidified anything, and my mind wasn't in vacation mode at that point. 

Dinner was okay - I could see the bushes moving a little more than they normally moved. Rain was harder. I spent all of dinner on my tablet reading X, trying to keep my mind off the incoming storm, but also staying up to date on what others are experiencing. Somehow that was really helpful. I took the tablet to bed a few hours later, turned on The Amazing Race (Season 1) and binge-watched with Hubby, to keep me distracted from the sounds happening outside. Wind was howling. Trees were creaking. Things were hitting the roof with hollow bonks. Every time the winds kicked up, I took a deep breath to calm down and prayed for it to be over. The cat - who is always aloof and very independent - came and curled up on our headboard, so we knew it had to be pretty bad! For hours, all I did was refresh X, play FreeCell solitaire, and cheer on the teams of the Amazing Race. 

Thankfully, we never heard anything big topple over. We never lost power. We were safe and warm inside our comfy bed, and after the worst of it passed, around 2am, I felt like it was safe for me to fall asleep. Bless his heart, Hubby stayed up with me the entire night because he knew how much I hate storms! Both of us conked out in minutes, and slept in probably until 10am that morning!

When we got up Friday morning, we did a quick damage check outside, and everything looked good. We kept power all night, but at some point after 2am, we lost internet service (and it stayed out until Sunday night, because the provider had lost power at their facility). There were a handful of big-ish branches in the yard, lots of leaves and Spanish moss on the ground. A few big branches and large twigs on the roof. But our Old Girl survived to fight another fight... God bless concrete block houses built in the 1950s! 

No internet meant that we didn't know much of what was going on in the world. I assumed that Helene just blew herself out by the time she got to the state line and all was well, so imagine my sadness and horror when I finally used some of my cell phone data and saw the devastation happening in western NC and eastern TN... All I could think was that this was going to be terrible for them, because they don't know how to prepare for storms like we do... they don't hit by hurricanes, so they don't stockpile, or keep extra food and batteries! I assumed there'd be pockets in the community that lost power, or needed to come together to feed neighbors, but the next time I used data to pull up X, I was horrified. Streets were gone. Entire cities were gone. People were gone. How in the world is Tennessee and North Carolina going to fix this? And where was the National Guard, or FEMA, or even the local cops? From what I could see for the few hours I was online, there was no one with any sort of official capacity helping these people. 

My heart hurts for the people of Eastern Tennessee and Western North Carolina. If you feel that you can, please donate to Meredith O'Rourke's (Trump) GoFundMe for these hurricane victims, donate to Samaritan's Purse, or to any local church or charity in the area. 
 

Wednesday, September 25, 2024

Mammograms and Haircuts and Birthdays, Oh My!

So, last year for my birthday, I had a fun adventure, going kayaking, and then having lunch with my mom and aunt. 

This year, I had a mammogram.  


Okay, so let me back up. If you're new here, hi! I have a husband recently diagnosed with Chronic Kidney Disease, and for the past six months, we've been to just about every medical specialist you can imagine. Because of that, I didn't have a lot of available PTO (paid time off) at work. I'd already requested my birthday off months ago, so I used the day for stuff that I needed to do, including a mammogram and a haircut. And to be honest, I did get to have lunch with my mom and aunt; we met up at Red Lobster the weekend before Labor Day (damn, I love those biscuits!)


My last mammo was in 2023, and it was clear, so I wasn't worried going in to this year's mammo. I was in and out of there in probably an hour. It didn't seem like anything was amiss. It didn't seem like the Tech didn't do it right. I figured everything was good. 

I went over to get my haircut, and my regular stylist was out with a broken wrist so I met with one of the other ladies, and... oh no... she cut my hair better. Anyone have tips on how to break up with a stylist, when you're seeing the other stylist in the chair next door?

After my haircut, I treated myself to lunch and then headed home. I figured that nothing more was going to come of my day. 

I was wrong. 

I got a message in MyChart a day or so later, stating that there is a mass in the upper outer posterior aspect of the left breast, adjacent to a stable intramammary lymph node. They wanted me to come back in for an ultrasound. Not surprising really, my girls are pretty dense; this wouldn't be the first callback that I've gotten. 

So on September 25th (on the same day that Hubby had a nephrology follow-up and a GE consult), we headed over to Woman's Imaging. Hubby hung in the waiting room while went back with the very chatty Tech. She lubed me up and started passing the wand over me, hovering in the same spot, with a lot of Hmmming. After about five minutes, she said that she wanted Dr. M to come in to take a look. 

Well, shit. It's never good when the doc has to come in, right? While the Tech was gone, I shot off a text message to Hubby, telling him that things were taking longer than usual, and that he should go ahead and walk over to the second building for his GE consult (he'd be late, but okay). He never texted back, so I didn't know if he'd even gotten the message! As I laid there, waiting for the doc, I was freaking out, in a dark sky, what if this is really happening kind of way. On top of everything else we're dealing with? Why now?? There were a few tears to deal with, but I held myself together. 

Dr. M came in and there was more squishing and Hmmmming. She concluded that she was pretty sure that it was just a cyst, nothing to worry about; since I'm a cysty girl to begin with, she saw no reason to freak out. She'll just check it again in 2025. 

Dressed, I went back out into the lobby, and Hubby was still there waiting for me. He looked worried but calm, and he asked if I was okay. I kind of bottled everything up and shoved it down, and said I was okay, but we needed to go - he was very late for his GE Consult. As we walked over there, I tried to put into words what I was feeling, but I could feel myself starting to cry, so I buried it back down. We had to reschedule his GE Consult to later in the day, so we headed home, where I sat, just kind of... numb. Like, what if it had been something? What would I do? I was trying to concentrate on other stuff (namely, the huge hurricane coming our way...), but I was just zoning out. 

Later, I checked MyChart to see the ultrasound results and they said There is a 6.5 x 3 x 1.6mm Septated Cyst {a cyst with segments, or tissue partitions} in the left breast; benign ultrasound. 

So yeah... I'm fine. Just a scare. I'm fine. Just a cysty girl. Which I already knew. Which shouldn't surprise me. But when they show up in my breasts, they're just a little bit scarier than when they show up on my chest. 

That big black dot looks scary!