Tucking In On A Sunday Night

 Your first Post of the 2026 year.

It is almost bedtime. I feel I have pretty much wasted today, and most of yesterday, and most days of last week. The whole waking up just feeling "off" be it due to meds, or body changes, it just doesn't set well with me to lay around, or sit around (which I cannot do) all day. Makes me feel like I am wasting time I could be doing something important, or needed, or just ... something.

For the month of January, I have appointments each Monday for a paracentesis. Most are 8-9 am, so I don't waste much of the day, and I think one is at 10:30. Either way, with appointments, I am usually in and out within the hour. Last week, 9.1 Liters were drained before we stopped. Something to do with the catheter/needle/device. Nurse stated there was still some fluid i the abdomen, but they would have to re-stick me, and for 3+ liters, I didn't want to go through that again, on the same morning. So, theory and hypothesis would concur that there might be more than 14 Liters in this week's drain. Or, as I sincerely hope, it is actually lower than that (showing that meds/diet/something) is finally working the way it should. Tomorrow will tell....

The Wife woke me this morning, saying she was off to church. I said I didn't feel up to it, and I didn't. Nausea has been hanging around here too long, and I need to kick this to the curb. Wife did bring some Arby's back for lunch, and I was able to eat half, before my taste buds shut down. Between a bite of hamburger, and a curly fry, the taste just left, and I had dry lumps of food to finish. After, I laid down for awhile, but just felt like I was wasting time (like I would anywhere else) so said I was headed up to the Post for a change of scenery (I'm home way too much now). Went there for a couple hours or so, said some hellos, played some games on the tablet, then headed home before 6pm.

Wife was gone, so I kicked into my evening wear (satin pajamas with the red velvet robe) ha! PJ's and a T-shirt... Meetings resume their regular scheduled dates this month with the Post. With the Holidays, and events, meeting cancels, event schedules, house parties, sigh. It's been a month! Anyways, I have everything pretty much set for the House meeting on Tuesday. Riders Dinner on Friday (Spaghetti, garlic bread, salad). Haven't decided about dinner. They need someone to bring salad, so I may wait a day or two to see if any others offer up. Trying to get more people to volunteer in this group.

Went through the bills that showed up this last week. Aside from regular bills, there hasn't been much. Most of my medical was at patient limits by October, and the majority of that is on a "credit card" for the hospital. I did have one bill come in from the ER docs, for that first date of service, I will go ahead and pay. The minimum on the card. Electric bill came, but isn't sue for a couple weeks, but it will go out this week as well. This week will start the accumulation of new medical bills for me. 

First one is tomorrow, for about $371 patient responsibility. Guess what that means? Yup! New spreadsheet!! Since this all started in September, I have gotten somewhat of a chance to learn more of Excel. I had one of the "bibles" I'd bought a few years ago, but the functions, etc. it goes over, is above my head. I need a more basic one for regular arithmetic formulas, text join, splits, etc. Maybe upping my skills will up my getting a job game.

The end of December I made the move to claim Disability. I've been told there is a difference between SS Disability, and just Disability. The one D gets less money. not worried, it's to supplement costs with all the medical. I determined through the online process, there was no way for me to submit an application, even with my 500Mb (exaggerated) of medical, birth cert, etc. So at some point this week I need to go to a SSN office and meet with someone that can direct me to where I need to go for assistance. Luckily, there are two offices within 10 miles of the house. I think we will pencil that in for Tuesday. I got to go look if I have to call for an appointment or just show up....

With that all said, I'm getting off of here. I know RM has been hinting I haven't been updating here (or anywhere) but no sense if there is no new info to share. Everyone knows I feel nauseous some days, better some others, and know to just leave me alone.

PeacE 

Did The Weekly ....

 Sounds like a chore of sorts, don't it? Well, it is beginning to feel like more of one as well. Having to go to the hospital for paracentesis whether it is scheduled, or through the ER ...just should not be happening this much. I know, I know, that that is what the doctor needs to find out. Sigh. I just hate being the patient.

So I did make it out of there prior to noon. Had the Youngest swing through Arby's as I was hungry. Had a a basic sandwich, fries and coke, then settled into bed for a nap. Got up and decided to head to the Post for a bit, as I was feeling "better". Back home by shortly after 6pm. In bed by 8:30pm for sleep, but it eludes me.  I spent some of that "falling asleep" time thinking about this disability claim, how to start, where to go, who to talk to, etc. It's a bit overwhelming to me. I decided to get paperwork ready for in the morning to start the process, and started hitting the 'patient portals' to get whatever report copies, notes, etc. I can so submit with my claim. There was quite a few downloads.

I had to put another hole in her. My belt took yet another hit for the team today. While walking out of the ER department, I noticed the shorts had drooped a bit, so I went to "hitch" them back up and realized there was no open slot to tighten the belt. I that was done at some point this afternoon as well. I did weigh myself, but it was several hours after the Paracentesis (i had eaten and had some tea) so I weighed in at 273.8 pounds I believe it was.  I don't recommend this weight-loss system though....

As our own mortality starts to show itself to us, I guess one mental status can go a bit haywire. I know my head has been wracking the whole 'what if I die" scenarios, and now I get ones about what if the Wife, what if this, what if that. Some of it is interesting, like imagining you won the Lotto (and a couple billion bucks) and could afford to go out and do/buy things for people, yourself, whatever. What would you do? Buy? Frivolously waste it on? Oh the things I could start doing if I could get started on this hoarder hotel....

Anyways, so that is where I am at 1:55am in the morning. Not tired at all, though I should be. I have been not taking the edibles lately, so to try to not mess with any other medicinal stuff my body is trying to do, but it sure makes it harder to sleep. It's nice to have a "bite of candy" and 30 minutes later you are just warm and snug under that blanket on the bed. It's a good feeling.

PeacE

Another Week of Catch-Up

 With all the medical appointments, blood draws, doctor appointments, VFW meetings, and all the other goings on for the holiday, I feel like I missed some days. I know I didn't - those were the days I was not feeling well. 

After the first week with the dosage changes on two of my medicines, I started to get hopeful as I had three days I woke up feeling better then normal. I know, it is too early to get my hopes up. I have to do this 'roller coaster' so the Docs can figure what what does my body react to, and able to withstand if we need to increase a bit. So for about 4 days there before Christmas, I was feeling bad, on top of the Santa Run at the top of the list.

So, needless to say, yes, in the last 2 1/2 weeks I have noticed changes I expect to be medicinal in nature, and probably will see more changes after the Liver Specialist appointment around the 15th.

Tomorrow I will be getting dropped off at the ER again. Time for the weekly paracentesis, though this will be the last one I get paid for the year. Deductible resets 1/1. Oh Boy. I was talking with the Wife at our dinner date tonight (Texas Roadhouse as we hadn't eaten here in quite awhile) about how I am nor short of breath like previous weeks, and I don't feel the uncomfortable pressure in the abdomen as badly, do I need to still go tomorrow. Wife says yes. Said Doctor ordered once a week until we control how to figure to get the amount being drained down (I think it supposed to be way under 10L). I'm just going. Even with the Wife at half of my appointments, half of what I hear goes to the wayside anyways.

So, basically, I'm floating. Starting to move in a positive direction, just not as fast as I want to go.

Christmas' went well. Thursday we met at the Middle Son's apartment and did our exchanges. The Oldest Son dot times/dates confused, so was not able to make it, but he made it to RM's yesterday where we finished up exchanges. I had a good time considering I a) was not feeling good and b) had to tolerate PT. I swear, I could have recorded every conversation he had with me, prior to even going to RM's. What he will ask, how he will ask it, how he will respond. Sigh.And it never changes.

I loved all my gifts I got this year. My pickle stuff, my beef jerky stuff, lotsa snack food. Couple shirts, PJs and clothes. Needless to say, I don't think I will finish all the snack food before February like most years. There is a lot! And with my decreased appetite.... Oh hey, that's good news! After the draining last week, my weight is down to 165.8 lbs. That is about 65 pounds since last April. As I found out tonight though, still need to lose more to fit behind them tiny restaurant tables though (that don't move).

All right, well, it is Sunday night, and I am wrapping up stuff and headed to bed. Tomorrow will be spent trying to start my Disability claim. Oh Joy.

PeacE

Let's Close Out the Weekend ....

  Saturday night was the 7th Annual Santa Run I have led, planned, etc. and am in the process of turning over to someone new to do it. That meant some changes to things, which I particularly didn't care for, but I am not doing this after this year, so why should I care? We had a total of 8 people show up. We had close to 32 on the original list, and winnowed down those that couldn't make it, to about 20. We needed about 16 to make back the money spent on the bus. Eight showed up. There were at least 3-4 that had pre-paid that didn't bother to show, and several were last minute "I'm not going to make it". So the 8 of went out still. At the final bar, we didn't even go in. it was about 12:15am, and we had the bus for another hour, but I said I was taking a Lyft. I was done. Nauseous, the whole abdomen pressure thing ... I was done. And sober. It was decided we just call it a night and all took the bus back, where I went straight home.

Around 8:30am, I had the Wife drop me off at the ER for a draining. She stayed about an hour, but I told her to go, as we both know it will take a bit to get through ER and services, no since both of us wasting our day. Drained out 14.1 liters this time (last drain was exactly 2 weeks ago). No fluid in chest cavity, so no need to hold me longer. Wife picked me up around 2 or so.

We did dinner tonight as a belated birthday one for the Wife. She chose Olive Garden. My taste buds and everything have been off during this whole liver thing, and tonight it was a bit worse. Everything I ate (salad, tour of Italy, breadstick) all tasted "off" in some manner. But the Wife enjoyed, and the Youngest came with us.

I have one last Riders meeting this month, tomorrow night. I'll head there after going out to visit the Sister. She was finally removed from the hospital to a rehab facility as of today. I missed being discharged from the ER and visiting her at the same hospital by about an hour. She has a supposed stay at the rehab of two weeks - hoping for faster recovery, and it is shorter, with the holiday coming up and all.

This week will consist of the final presents being bought (read: gift cards) and the start of the wrapping. Since the Wife does most of the shopping, I only have a handful of things to wrap. Too bad I have no clue who gets what, otherwise I would get stuck wrapping more.

Youngest's new computer arrived today. Right now he is just opening it up and hooking  things up and preparing to download his games/programs/services.

Guess that does pretty much round out the weekend. Til next time...

PeacE

I Feel ... Productive

 Not quite noon, and I feel like I have accomplished quite a bit this morning (for me). Picked up the Youngest's dead computer from Data Doctors. They quoted $1300 for replacement of compatible parts. At Walmart, I found a system that would work for him (verified) and for only $899. It is to be shipped and arriving tomorrow. Christmas is definitely done for that kid this year!

Our Riders dinner wasn't as good last night. I think we did like 14 sales versus our usual 20+. I know it is December, and that limits, but truly was hoping for more. RM and PT came by. At one point I about smacked PT upside the head. We were in the canteen area prior to dinner, and he asks, out load, 'Have you decided to quit your Secretary position in the Riders'? Well, the Director was right behind him, so I muttered a quick 'I don't want to talk about it' and hoped the Director didn't overhear. I don't think he did. But PT is just getting worse with the dementia/mindset stuff. Just blurts out whatever, even if he already asked it. Does things like above, without a thought. Makes me want to be around him less, if that is possible from what I already feel.

So, dead computer picked up, new one ordered, picked up "breakfast" at McDs for the family, and started to pull out all my Santa gear. I need to see if I threw away the suit I had been using for the Santa Runs. It is stained, and whatnot, but I did find it, so no worries of dirtying up my nicer one I use for gigs. Some electrical tape repair to the belt, a quick lint remover roll and should be good to go for tonight. Oh, I need to get a hat for it. I didn't see one when I found the rest of the suit. Good suit is pretty much ready to go for the 19th as well.

I think I have decided that I am going to go to the ER tomorrow for a paracentesis. This morning I woke, again not feeling the pressure as bad, so am beginning to think the change in meds has starting a positive impact now. But I still need this drainage done as it is uncomfortable. I'm packing my backpack tonight just in case. Couple changes of underwear, socks and PJs, laptop, tablet and chargers. Just in case they keep me over night (or longer).

VFW Riders meeting Monday night for me, if I am discharged in time. Looks like we might do a spaghetti, garlic bread and salad for our January dinner. Director and I talked last night, the Hall has a rental that night after our dinner, so I am sure we will pick up some extra meal sales. A good reason to go with spaghetti! Cheap to make lots of it.

Okay, well, I still have stuff to finish prior to the Santa Run tonight. We should call it "The Myth, the Beard, the Legend ... Last Run with Santa". I am the only one from seven years ago, that will be at tonight's Run, and the last of the Original Guard. Really wish Oldest Son could make tonight (he has 6 years of going) but I understand Life happens.

Yesterday I worked on a spreadsheet for my medical stuff. One page is medications, amounts, times/day, followed by a second workbook page of the Doctors, and who they are to me (PCP, AZ Liver, etc.). Printed out a handful of copies to carry with my medical journal, because everyone always asks for the medicine info. Second page is in case they need contact numbers, etc. I think it turned out pretty good, considering I am self-taught and learning. My buddy that is "taking over the Santa Run" did a spreadsheet for those going, who has paid, who confirmed, etc. that I also modified up this morning. Adjusted it so those that need to pay still are at the top and easy to find on the list. We need about 8 more that committed to go, to show up and pay to cover the bus costs. I'm hoping the SIL doesn't go, as my Brother said her money will pay for my spot if she doesn't go. I like free.

Anyways, I wasting time now, so need to get off here.

PeacE

It's Easy To Get Lost ....

 ... in the seemingly notes/paperwork/discharges/follow-ups from doctors and hospitals, to find out the important things, like, what exactly are the meds/dosages? Is that a blood draw at the Liver Dr office, or is that not until January when he scheduled our next appointment? I have been trying my best to keep a journal of "all the experiences" of this joyride, as well as what reports I can print from patient portals for any doctors I see. I try to keep an accurate spreadsheet on my meds, dosages, how often to take. In fact, I need to call the Liver Spec. to confirm a couple things: do I have a blood draw on Monday, even though the appointment isn't until January? What were the changes he made to the two prescriptions? One I got cleared through the pharmacy already, as it was an increase in dosage and times to take. The other one, not sure...he said something about increasing it (I was already at 2xday per the hospital docs) but did he increase the dosage as well? Pharmacy is holding that one as I just filled that dosage strength a couple weeks ago, and the insurance wouldn't want me to have dangerous pills around, I guess. Gonna be a bit busy in the morning.....

Saturday, the Youngest was cleaning up some of his accumulated trash (empty sodas, sunflower seed packs, etc.) and accidently tipped a cup of water into the top of his computer casing. He was able to shut every thing down in seconds, but not sure how bad. He dismantled and dried out everything he could, and left it out and open to dry more. Sunday he tried powering it up, but only 2 (of 4 fans came on, and it was like the power wanted to come on, but wouldn't. Not knowing any computer-savvy people for this job, we took it up to Best Buy for their Geek Squad. 

I was angry! Without even looking at it, they charged me $180.00 ($16 and change tax) to purchase a coverage plan for this one item, that I don't even know if it is worth repairing. Then another $80 for diagnostic charge. Not happy! But Son needs it, and it needs to be found out. They guy hooks it up to a power source and turns it on, sees the same results we did, and said they wouldn't be able to look at it until the next day (it was evening). The next day, no call, no text from Geek Squad. Youngest and I go up, and I demand it back. A different person told me the coverage was required no matter what to have service there. I responded they didn't service it at all. He said when water spills are the cause they have to let it set 2 days before even looking at it. I demanded my refund, of the coverage and the diagnostic fee. He caved right away, when I added that his "associate" had fired it up the night we brought it in, and now it could be damaged more by their negligence of their own company policy. And Shouldn't I go speak to the manager right now?

So home we go with a computer that still doesn't work. The next day I took it into Data Doctors, who charged me $50 up front to look at it, said they had to wait the 1-2 days as well, and life went on. Today is that second day, and no call/text, so I told the Son we will call and check on it in the morning. Hopefully they found something fast, easy and cheap. I can't afford another whole computer right now.

My sister fell and fractured her pelvis this past weekend. She has been in the hospital (same one I go to) waiting to find a rehab facility that will take her insurance (Thanks Obama Affordable Care) and have a room available. Hoping tomorrow. I spent a little time with her yesterday and today. With her somewhat loopy from the pain meds, it's just too easy to get those sibling love jokes out of the way. I did promise no pictures though. Told her if she stayed until Sunday, we could be roomies. As I plan to go to the ER on Sunday for a draining, and any possible overnights they might need. At least my calendar is fairly free next week.

Getting close on my book goal. I have 2 reviews I have been lax about doing, and I think it leaves me one short, which I am working on reading now. Just with all this medical and whatnot, the desire to read like I did before has gone to the side as I just can't concentrate as well. Maybe when things start getting in better control.

PeacE

"... and I squealed with glee, as I knew the long awaited day had finally arrived ...."

 ... and then it shit on me.

The Liver Specialist was the longest awaited doctor appointment I have had over these past few months. Monday was the day! The Wife was off work to help be decipher all the medical jargon, and help me answer the correct questions with the correct answers instead of tearing off on tangents about ... whatever. Usually about the crap I went through at the hospital, etc. Either way, the appointment wasn't overly long. They wanted to do an U/S but as it had been a week, I was "re-filling" and there was too much fluid for them to really see what they were wanting to see. So, they sparked an appointment for January now (with fasting prior to). They ordered a full menu of bloodwork. Of the two 'laxatives' I take (to drain the water - which obviously is not working - I actually told the Doctor that I peed more prior to September regularly than I do now with pills to make me do it. It's like it just takes water from my body and throws it in the abdominal cavity. So, new pills, with taking multiple times a day versus once as before. The Doctor did ask one correct question: How much are they draining when I go in? I explained if I can get in at like 2 weeks, it's about 11+L, but over that time period it goes higher. I mean, 16.6L the last time I was in the hospital at that was at 2 1/2 weeks. He said that is a no-no. He set me up standing orders for therapeutic draining no more than once a week (as needed). Today I called the hospital - they are booked solid through December - no way to get an appointment. I explained that I would have to use the ER then, and the Scheduler agreed with me, saying 'Do what you need to do to help you'. And then I booked the four Tuesdays in January, in case I need them. I can cancel a couple days before if I don't need them. 

So all this happened prior to noon even. And it is the Wife's birthday. So, as she wanted, we went home and took a nap. She had some things to do in the afternoon, and I think it was about 6:30pm when I asked her if she wanted to go out on her birthday, or move it to the weekend. She commented that I am limited to what I can eat, I said I can do salad anywhere. Finally she said no, as it was getting late enough, with waiting on crowds, just not worth it. So I guess will will try this weekend.

Youngest Son has had a problem the past few days, but I think I will save that for tomorrow for fodder.

Friday is our VFW Riders meal - lasagna, garlic bread and salad. I signed up for the salad and dressings. Am going to try to make the dinner, as RM And PT will be there, but will depend on how I feel. Saturday morning is our Riders Toy Drive I should make an appearance out, but again, depends on how I feel. With the pressure I am feeling right now, I have a strong idea I will be entering the ER around 9am Sunday morning, and sending the Wife on her way. Nothing on my calendar until the 19th, so if the hospital keeps me a couple days again, I am okay. I'm packing a bit better this time too, just in case. Birthday dinner will have to be Saturday I guess.

Monday, after the appointment, I put my phone on do not disturb until today. Several friends and family tried reaching out for an update, but I just didn't have one. I also was feeling a bit in the dumps with how the whole thing went, and just needed to wrap my head around some things. It's getting hard to not just quit some days. I am in no way shape or form saying I am suicidal, or delusions of death, etc. I'm just tired.... of not seeing positive reactions/results, feeling like I am being not told all the info when it comes to my treatment and care. It is frustrating for me. Just as I am sure I am frustrating to my family at times with my shortness of breath, fatigue, tiredness, and any other ailment that hits me.

Sigh. One day at a time, they say. Well, I'm impatient.

PeacE