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

Let's See What Happens ....

 I last updated this past Saturday morning. Saturday itself wasn't a bad day, but at 12:15am that night, it started me on a ride I did not care for. I woke the Wife (who had just fallen asleep) and informed her we needed to go to the ER. Once again, the pressure on the abdomen was just too much, plus this time, I was actually getting some pain spikes throughout. My next normal appointment for paracentesis is on the 4th - five days away, and still over two weeks from the last one.

Spent most of Sunday in a room in the ER. They did perform a paracentesis and drained approximate 14.4 Liters of fluid (the highest yet from me, though that may not be an EXACT amount). Chest x-rays followed as per the norm, and sure enough, fluid in the lung cavity again as well. That meant an overnight stay, as they refuse to do two procedures on a patient (unless life/death threatening). I'm still not happy.

They switch me up to a room under observation, and my thoracentesis is going to be scheduled sometime the next day. Sure enough, 8:15am, I am off to get it done! I'm happy, thinking, like last time, there will be a couple hours observation afterwards, and they send me home. Nope. Here's a grenade, go lay on it over there and see what happens. For 2/3 of the day I am arguing with nurses and other staff as to why they are not releasing me - sodium too low, this isn't right, that isn't right, potassium is low. I told them half of that is because when they bring around your prescriptions you are to take, they gave me only 3 of the 8 I take, potassium being one of them. I was ready to scream for am AMA to leave, but the Wife talked me out of it. I finally gave up. Let the hospital keep me forever and kill me.

I am moved again to an actual inpatient room, where I spent the night (again awake all night). I saw Hospital Doctors on call, Nephrologists, Pulmonologists, too many nurses, over the course of my stay, and some would say I was good to go, then someone else would countermand that. Finally, Tuesday late morning, the Hospital Doctor discharged me. Longest hospital stay of my life with a bunch of what I feel were incompetents. I went home and crashed for a couple hours, and still made it to the House Comm meeting at the Post.

Wednesday I had to return to the hospital for the endoscopy. Aside from them running a little behind, it went fine. Glad they knock me out. I did get the report from it, and everything seems fine on that front, and I have the report for the Live Dr on Monday. Which is my next big appointment. This is the moment I have been waiting over three months for - to finally get some real answers as to what is going on, how bad is it, what are we going to do. Basically, what could very well be a life-changing moment.

The docs in the hospital did ask me to drop my fluid intakes to 40oz/day (down from 60oz, which a rarely was able to do) and I just shook my head and said sure. I know I need to, it is just hard.

Welp, I feel the need to release some bowel pressure, so need to go....

PeacE

Counting Down the Days ....

 Thanksgiving was a nice day. I was awake off and on the whole night before, anxiously awaiting the time to get up and moving so I could get down there to see my kids, and of course, the Grands. I cared not for the thoughts of glorious foods, desserts and ice cream. I just wanted some cuddle time with the little ones, and the joy it brings me to see all the grown kids together, joking around and whatnot, as if they had never left home.

Well, I finally just gave up around 7am I think it was, and with my "noises" I was making throughout the house, the Wife didn't get to sleep in to 8am. We were on the road by 8:45am. Youngest had left way early that morning, driving himself down. His first solo trip there, as well as the longest solo trip I think he has made since learning to drive.

We arrived, and only were waiting on the Oldest Son to get there. Unfortunately, his girlfriend could not make it. Their cat has been sick and requires timed medication I guess. The gal they had asked to take care of the cat for the day, wanted to take the cat over to her house, of which they were promptly like No. So she had to stay home and care for it. Food prep started, and I sat out of the way at the table, taking turns holding the two smaller Grands, and catching up with the kids as I could.

Dinner was extravagant. The SIL smoked a turkey, as well as deep-fried one. His skills are honed in now, and both turned out wonderfully juicy all the way through.. and the taste! Mmm-mmm good. I was able to get a few things on my plate that didn't make me nauseous, and was able to get them down. Mostly a little turkey, mashed potatoes, corn, deviled eggs, and some giblet gravy that the Daughter did for me from RM's recipe. OF course, this one is different, as they used drippings from the smoked turkey in it as well, so had that smoky taste to it, which I rather liked.

All the older kids had brought/made desserts, so there were plenty. I skipped on making my Cherry Delight (which they did gripe about) as there was going to be so much. I even had to bring some of a couple desserts home as I could not eat them there. We finally headed home around 8pm, the Oldest Son following. Youngest stayed the night, and the Middle Son and family had already headed back as he had to work that night. All made it home safe, except for the Youngest. As of last night, he seems to have caught the "bug" Daughter and family had earlier in the week. Lots of vomiting and sit-down time in the reading room. Hopefully he will feel well enough to travel home today.

Saturday is here, and this last week has been wonderful as my calendar has had nothing of importance on it, and is clear now through Tuesday night (VFW House meeting). Wednesday is my Endoscopy. Thursday is another paracentesis. And FINALLY, on the 8th is the Specialist appointment. Right now I am just over two weeks without being drained, and though the pressure is definitely there, yesterday, and so far today, I actually feel somewhat normal still. Keep it going for 5 more days....

Candy Canes came in for the Santa Run on the 13th. As did my new boots for my outfit. I also pretty much completed "my" shopping for everyone (Thank you Amazon) and am only down to gift cards now. Waiting for Fry's/Kroger to do their 4x fuel points (or 2x if at all) before I get them. RM and I joked a bit the other day about Christmas shopping and how Amazon is our friend, and keeps us out of the brick and mortar stores. I dislike crowds so much....

And I think that about does it for today. I have a couple things to adjust on the Agenda for Tuesday's meeting and send that out, then I am probably going to the Post later. I know, exciting, right? Oh, and RM.... next Riders dinner is 12/12 doing lasagna, garlic bread, and salad - $10/plate, usual time. Off to check the BP and Glucose....

PeacE

Happy Turkey Day

 Nothing like being woken up at 4:30am by the bladder.

I still have 4 hours until I told the Wife I wanted to be on the road.

I am not tired to lay back down.

I am over-excited as I get to see all the kids today.

PeacE