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

Filling the Hole

 I had a Paracentesis yesterday morning. One thing I really like about being the first appointment at 9am, is sometimes, they start early. So yesterday They had me back there and on the bed by 8:30am. I guessed that it would be less than 10L drained - thinking more like 6-7. Ended up draining 9.4 L. Received three bags of albumin, and was out the door by 10:30. I had lunch plans running through my mind, and had already decided what I wanted, so I went to JT's Gyro's and got my usual. By this time RM had texted worried about me, and asking if I was okay. I got home and let her know I just got home and would post an update soon. Turns out, the Life360 app we use did not record me leaving or going to my appointment, etc. so she had no idea if I made it, or overslept and was concerned. After checking my phone, I realized it was because Mobile data was turned off.

I weighed in prior to going to the hospital in the morning. Came in at 296 lbs. Ugh! Well after draining, and I got home, I weighed in at 276 lbs. Better, but not my actual weight just yet. The Edema in my legs and such is probably another 20 lbs. and that would drop me to near 250, which I can deal with. Nothing exciting happened at the appointment or with lunch. I ate it, and it was good.

This morning I have done my bio readings, took my meds, drank my vanilla protein shake, and am ready to get things started. I think I am going to skip the AA meeting today (maybe) and just go to the Transplant one. Depends on how I feel. Last evening, my head started hurting like I had slipped on ice and cracked the back of my head. I hadn't fallen or bumped my head in anyway, so was confused about it. I even probed with my fingers, expecting to feel a bump. Nope. Just a headache that is sitting in the back of the head. Generally I cannot take anything for situations like this. Acetaminophen is not good for the liver, and neither is Ibuprofen, but it is the better of the two. I do have a bottle here that I save for extreme pain, regardless what the doctors say. I had 2 pills last night, and this morning I still feel some residual pain. Muscle related? Too Tense? I did some stretches of the upper back and shoulders this morning, so let's see if that helps.

The first half of  the year property taxes are due starting today. I see it has gone up 3.7% (about $40) from last year. Since the house has been free and clear for many years, we have to pay it, as we don't have an escrow account. I could pay to set one up, but I don't think it is worth it. Also have the Wife's registration due. Two years for her car is more than 1.2 year's taxes, for now.

I think that is all I got to say about that.

PeacE