A Few Random Words Before the Meeting

 Welcome to another Saturday and Ralphd00d edition of ...I ain't got nothing to write about.

VFW Riders dinner actually came off pretty good last night. More people brought in soups, that had not signed up or notified anyone, so there was a good variety. RM went out of her way by making some brownies and some cherry cobbler. Oh! And the cornbread, which disappeared rapidly. The Youngest didn't get multitude of compliments on his soup, but still heard a few say it was extremely good. After RM had left, I had heard several people talking about her Chicken Chili, as they had wanted more, but she had already gone (close to being over).

Last night was a reminder of my strength. I carried a full crockpot about 75 feet at the Post, nearly dropping it twice. When I was packing up to go, even with 1/2 - 2/3 gone, I still had a hard time carrying it to my car. My arm muscles have atrophied quite a bit from all the weight loss, and other medical. I had the Wife bring it in from my car because I was worried about dropping it.

The last 2-3 days have been busy with quite a bite of fluid release. After the 7.4L drain on Wednesday, the TIPS procedure might be kicking in finally. I have been urinating frequently, and even having to sit down a lot, releasing more fluid. I have a Para scheduled Wednesday, and will see how I feel come Tuesday.

And I think that is all I have today.

PeacE

F is for Friday and Frustration

 It is Friday, and to most people that work M-F it is their "celebratory" day to announce the end of their work week. To me, it usually isn't much, unless I am planning to visit RM. Today, it includes the VFW Riders soup dinner night. Due to low number of volunteers, and those that were doing it all the time, we had voted from once a month to once per quarter, and this is the first one. I have three (yes, only 3) people that are in the Riders group offer to help with anything (making soup). Not. One. More. I had to reach out to my Son and RM to at least have 5 different types of soup. 

Well, I overslept this morning. The alarm went off at 7am, and I thought, 'I'll just stay in bed until the Wife's goes off at about 8'. Well, somewhere down the line, that got messed up. The Wife jumped up out of bed this morning, started rushing around. I checked my phone and realized it was just after 9am...she was late, and I overslept. I had a pick-up at Fry's to do between 9-10am, so I needed to get up and moving as well.

Got the Wife off to work. I finished getting ready and headed up to the store. Came home, Youngest was still up and helped carry in the bags. I had carried 4 bags, not much in them, but one did have 4-2L bottles, and I can still feel the strain on my muscle, particularly the pecs. I hate being so weak.

Youngest is frying up his bacon for the soup, and we will crockpot it for about 3-4 hours. I already checked RM's blog and she remembered I had asked her to make something.

Debating doing my meeting this morning - just feeling like it. But that's when you should go they say, so I have about 30 minutes to decide.

I think that is all I have today to comment about.

PeacE

Feeling Let-Down and Also A Bit Angry

 The beginning of this month has been somewhat exciting for me. Mayo called. Wanted to move my appointments to the 6th so my case could go to the Selection Committee on the 7th, instead of being later in the month. But yesterday came and went, no call giving me a yes or no answer. I checked the patient portal, and found some clinical notes from yesterday, basically saying something like my SC was relocated to 10/14. Which to read my case review with Selection Committee was moved from the 7th to the 14th. Too many cases? Not enough time? I don't know the reason. I messaged the nurse to verify I was reading it correctly. 

So that leaves me sitting here feeling let-down that another week will have to go by that I am not eligible for a liver every doctor there has said I need replaced. I'm also angry that I have to wait another week.

I haven't had my quiet time this morning, as I slept in an extra hour. That day after being drained (7.4 liters by the way) is tiring usually for me, though not nearly as bad today due to the lower amount I think. Maybe that TIPS procedure is finally starting to work? But I need to get  my quiet time in, to talk to God and let him take control of the whole review thing.

Fairly slow day today. AA Meeting at 11, Mayo Transplant Support at 12, and nothing on the afternoon except to schedule a Fry's pick-up for tomorrow for the Youngest's food supply for making his soup. Tomorrow is the Rider Soup Dinner. We are not talking about it... I already gave that to God.

So enjoy your day!

PeacE

Sleeping. Not Sleeping. Anxiety. Nervousness.

 Just a few things I have experienced over the past couple days. Sunday night, my mind was racing about the consults on Tuesday, and the Case Review on Wednesday. I really hope I make the List this time. Well, between all that running through the headspace, everything was beginning to hurt more than usual: the back, the knees, the pressure on the abdomen, my sides if I laid on either one... I am sure there are other things I could add to that list, but continuing the story.... I decided to take on of my sleeping pills - faster to sleep, and kinda sleep through the pain. I took it later than I should have. I woke at 1pm'ish on Monday. Yeah, nothing else was waking me. I had plans to try to get out to RM's as my Sister was in town, as well as her son and his family. The first text I saw was Sis asking if I was coming for lunch.

Well, I was groggy as usual after a night of taking the pill, so I was just going to cancel. I began to type out a text that I wasn't feeling good enough to drive over there. Then I felt like a slap on the back of the head. I re-thought it real quick. I deleted the text and called Sis. I told her give me about 30 mins and I will be there. I still didn't really want to go, but I now had committed. So threw on some clothes and headed to RM's.

I got to spend some time talking with Sis, her son and wife. S, Sis's husband, was napping with the baby. Of course PT was there (erase, erase). Sis and Hubby had to leave for an appt, and the Nephew was going to go do something with his family. That left it down to RM, PT and myself. I thought, just for a while longer. That turned into everyone going to Dennys for supper. I called the Wife, but she had too much paperwork to do and couldn't make it, but I did go. We had a nice supper, then everyone kind of went their own way. The Niece that lives here and her family were at dinner, as the nephew's family were still out doing whatever. I headed home with half my desert (apple crips with a scoop of vanilla and caramel dribbled over it) that I gave to the Wife. She couldn't believe I brought it home for her.

After that, the night was long and quiet. The soft squeak of the bedsprings ringing loudly int he quiet as I tossed and turned ALL NIGHT LONG! I think I slept in so late, it screwed up my sleep cycle. So today I am going to try to get through the whole day with no naps. I should good tonight then. I do have labs, a nurse, and a doctor consult this afternoon. I've been praying the past several days that nothing odd catches their eye, and the lab report doesn't show anything that would make them consider holding from the list again. I keep telling my self I put it in God's hands, but I can't help myself. It's a major life thing.

One thing that was extremely surprising, and very heartfelt, was Sis she had a present for me. I tried and couldn't imagine what shoe would be bring from NM for me. It was an afghan that she had made herself. The story she told went something like, when she started it, some people would ask her who it was for. She would answer  'I don't know. God hasn't told me yet.' Well, when she reached a certain part (was it about halfway?) my name kept repeating as she praying and working on the afghan. So she decided it was for me. As she handed it to me, she mentioned that hospitals get cold and chilly and I was to use it. It's almost a lap blanket than a full size, so it should cover my feet and come up to about mid-chest - perfect for after the transplant.

And that is how my week has been...

PeacE

Self Re-evaulation

 The Wife and I had a good talk last night. We talked about the upcoming chance to be on the Wait List, and how it will proceed from there. We talked about her viewpoint of the whole liver thing, and my wonderful Wife is so supportive. I have several mixed feelings about the whole thing, and fear is not one of them. Right now I feel more frustrated and out-of-control than anything. Mayo controls what happens. They are the ones that have made all these requirements for me to meet, and I have as fast as I could. These past couple months, just have been disappointing to me. Cannot tell if the TIPS procedure is working properly. I know they said it could take a few short months to see a major difference, but I'm still draining 9+ liters a week. To me, that sounds like it isn't making a difference.

So I have been a sheep these past couple months. Take my meds, do a paracentesis each week, come in for labs when they want me to. All this time doesn't count towards any end goal, except to get approved for the list. I understand there was a procedure, they changed up meds, they need to monitor with labwork for a couple months to make sure nothing goes wrong. But it is frustrating to sit here and do nothing basically.

Giving it all to God, and letting him handle has worked for the earlier part of things, but now, I feel like I want control back, to tell/make them do what I think is in my best interest, though it be or not be. God and I talked about that this morning, and again, I relinquished the situation. I'm calmer now, but still a jumble of emotions.

Enough of that.... I went up to the Post yesterday. I thought it'd be nice to see some of the guys since I have only been there mostly for meetings lately. I sat there from 1pm-3pm, and there was only two of us at the bar. So I left.I spent the rest of the evening playing games.

Today I will be completing the minutes and agenda I have been putting off. And that's all I have planned.

PeacE

Ugh. Work.

 I'm playing the procrastination card knowingly and openly. I am in no big hurry to do the minutes and Agenda I need to get done. Both are extremely short this time around, but I just don't feel like doing them. I am avoiding them this morning by attending a couple meetings online. This afternoon ... well, I do need a couple things from the store. Maybe I'll do the walk-in rather than the pick-up.

Been having headaches the past few days. Most of it is in the back of the skull area, so I am thinking muscles related. I have done some stretches, but they don't seem to really help. I broke down and took 2 ibuprofen the other say, and the headache has not returned as of yet. 

The paracentesis I had this week did not leak at all. They had sent me home with some bandages, too, that seal around the gauze, but have not had to use them. I was a bit worried considering last week it leaked until Sunday, one drip at a time, but it got fluid out!

Alrighty, I need to go. It is almost time for the first meeting.

PeacE

Hot Diggity Dog!

 What a Happy Friday I am having for a short while! With all the stuff going on with Mayo, and dealing with the edema and continued large drain amounts, even with the TIPS, I have been feeling out in 'Limbo'. There's nothing I can do, but what they tell me, and who knows when I will get reviewed for the list, and then sit in limbo more, but at least towards a goal. I've felt ... indifferent. I'm tired of what feels like a run-around by Mayo, it seems I'm never going to make the list as each time there is "something" that has to be done. Why didn't they schedule it earlier if they knew it was going to be an issue? Frustrating for me, and I was reaching the end of my rope. I was starting to just not care anymore.

Yesterday Mayo called me (oh great). I had labs, nurse consult and doctor consult for Thursday (8th) supposedly to be followed by a case review for the List on the 14th, and they wanted to reschedule things, to the 6th - because they wanted my case to be reviewed on the 7th instead! Proactive! Of course my schedule was open, and we did it. So now I hope within less than a week to find out if I made the list.

Prayer does work!

So I am getting excited again for this to happen, though I know it could be months on the List as well, but at least it is towards a goal, not just working on covering symptoms. My quiet time had a lot of praise and thankfulness in it this morning! Which fit right in with my Bible reading in Psalms! 

Nothing on the calendar really until Tuesday now. I need to get Riders minutes done and the Agenda for the House committee at some point this weekend. 

And with that, I think I'll close up today.

PeacE