There Has Been An Unexpected Change ....

 ... to everything I do, it seems. The biggest one being the time at which I set out to do said 'thing'. With some of the bad sleeping nights, I may not get up from bed before 11am. Other days I am up earlier, but the getting motivated thing to do something... well, another story.

Yesterday I was at a decent morning hour. I had wanted to be up, gone to the Dr.'s (bloodwork in office), stopped by Walgreens for the shingles shot, and back home before 10:30am, the scheduled time for my phone interview assistance with SSA for disability. Well, I didn't make it out of the house in the morning.

Near 10:30am I got a call from Banner Transplant. This is the referral the Liver Dr. made for me, to have them schedule an appointment to see about getting preliminary tests, paperwork, etc. out of the way, in the event I need a transplant. I set an appointment (March was the earliest) and had to go as another call (SSA?) was coming in. 

Missed the second call, I think I hung up as I was trying to end one and get to the other. Call log shows it was Banner calling at the same time as I was on scheduling. So I called back, left a message in case they need more info from me.

Finally the SSA call came in (on time). As I sat here at my desk, I have medical reports, discharges, procedures and results, W-2s, birth certificate, my medical notes journal - I'm prepared to load them up with info, and to scan/send anything they need. Nope. Thirty minutes later I was off the phone, shaking my head at the time frame to be approved (six months). Six months? Hmmmm... I have a friend at the Post that works in a similar field. She does interviews to offer suggestions/decisions for continuing coverage for some other Government welfare-type program. She said once I got the app process started to let her know, and she knows of a way I could speed up the decision, due to my medical issue. I'll have to get with her this weekend.

Later on, I get another call from Banner, this one the hospital scheduling for my paracentesis scheduled on Monday. Registration and Admitting do not communicate, and their computer system that is there to link and share patient information is non-existent. So had to give her the insurance information (again). She couldn't check my current benefits, so asked to call me back. Sure. A short while, she's back telling me my insurance still says I have my full deductible to pay (true) so my patient responsibility for Monday is $1710. Just like the past three Mondays. I told them I would make a minimal payment ($500 like last week). That's settled for now.

Later in the day I get another call from Banner Transplant. Seems they are not covered through my insurance (yet Banner hospital is?) and it would all be out of pocket expenses (fat no). She mentioned that the Mayo Clinic is the only one in the Valley that is under my insurance. Okay, so I did leave a message to the Liver Doc about this, and also the prescriptions my PCP wants him to be in charge of the refills, dosages, etc. as it is his specialty. I did some looking online, and I cannot find through my insurance or the Mayo clinic, where they are participating with my insurance. This may be a fun one if I have to do a transplant, which no doctor has said I NEED or HAVE to have ... it's a 'just in case'. March would make my 6-months sober, and eligible for the list.

This morning, I was going to try to do the lab thing and the shot, but ended up sleeping until 10:30am almost. Got up, checked my emails, and was thinking what do I need to get done. Decided I was going to the Post to work on the Riders meeting minutes, and maybe the agenda for the House in a week or so. Made it to the carwash when my buddy J asked about doing lunch, with another of our friends, D. So we three met up. Tried out this gyro place over at 35th Ave and Greenway, NW corner, that had been there for years, like 15+ years. It never looks busy. J had gone there back earlier in the year and mentioned it, I just never made it there. Oh my! I got a Beef shwarma pita, with fries and a drink, for $16, and it was awesome! I was worried that there would be some weird Greek cheese or sauce that would permeate the food and I wouldn't like it ... I was wrong. I want to go back and try the lamb and chicken as well.

It was good to catch up between the three of us. Then I was off to the Post. Finished the minutes, emailed them out. Decided the agenda could wait until next week, in case new business comes up. I headed home about 4pm, and here is where you find me. Today's mail: SSA contact of my scheduled phone appointment for 1/21 at 10:30am. Right on time to remind me (snort).

Tomorrow I don't have anything on my calendar. I should get out front and work on the yard. I did get weed eater line for trim work, and an action rake to work on removing the grass/weeds in the section between the neighbor and our drives. Physical work. I see many breaks in my future (if I actually motivate myself to do it).

PeacE

I Don't Like ...

 ... so many things, but today I have that in particular is on my mind, or rather, my stomach. Waking this morning after a night of up and down due to leg cramps, I found myself just wiped physically. I had plans ... but that didn't happen.

Saw the PCP yesterday, and we played catch-up on stuff I have had done since late November. We discussed which doctor(s) are in charge of dosages/renewals of which medications. She okayed me to take the Shingles shot. She also wanted some blood. Seems every doctor I see wants bloodwork done. Sigh. She is having the staff look into the Rybelsus issue (still don't have and it has been two weeks). I asked if I could quit taking, as my A1C yesterday was 5.3, and it was under 6 last time as well. For two weeks of not taking it, my glucose numbers have stayed consistent. She wants to wait until our next appointment, and re-evaluate. Maybe one less med soon...

Rushed over to the hospital for the paracentesis. Drained another 9.5L and sent me on my way. As always after these procedures, I hurt for a couple days. The organs just feel like they are hanging in there without all the fluid pushing them wherever. Takes awhile for them to adjust back to normal. Also brings on some nausea at times.

Then it was off to the pharmacy. I picked the non-special order medication the Liver Doc prescribed. It is a liquid, that once it gets to the colon, helps as a laxative to help push out the bacteria causing the ammonia causing my encephalopathy. It says it takes 24-48 hours to begin working, but just in the last hour, I released a convoy of RVs sump tanks, and I think half my internal organs. 

Ran to the grocery store to get a select few items (yeah right). I joined a website that you sign up to try certain products, buy them at the retailer you choose, and enter the receipt online. They supposedly pay you back a rebate portion. So, I found 2 of the 4 items I was looking for, and a cartload of other stuff. I admit, I goofed. I went to the store hungry (fasted for possible bloodwork, which I didn't have time for). Anyways, went home and unloaded, then shortly headed back out to get my hair cut and head to the Post.

The Riders meeting went well. Interim Director had some great ideas, and the Chapter cleared up some unfinished business. Overall, I think we will be okay.

Today, I was going to get the bloodwork done, followed y a trip to the pharmacy to get the shingles shot, and a last stop at Lowes. Seems our bathroom toilet flapper wore out and isn't seating properly. Three minutes if that to fix, but need the flapper. After waking this morning, I pretty much knew I was not going anywhere today, even though I want to. My buddy J says there trivia night up at the pub he is going to now. Maybe later I will head up there. I don't know. I don't much care for sitting at the bar drinking soda, watching everyone else get drunk.

Tomorrow morning I have my phone interview with SSA for my disability application. Hopefully it won't take long, and I can get today's stuff done tomorrow, maybe.

And now you are caught up.

PeacE

Getting Into the Week

 Figured I might write this one up a little early. I have an appointment with my PCP at 9am, and I am planning on going earlier to see if she is able to get me in sooner. We will be playing 'catch-up' together as we talk about what has gone on since my last visit in late November. Also, updating insurance, medications I am on now, procedure results I have  (endoscopy results including the biopsy they took) plus any that are planned coming up. Which, at this time I do not have any excluding the paracentesis when I do them. I think I mentioned that after this week, I may try going to two weeks at a time, versus this one week. I don't think there will be much else for her to really address, aside from wanting to refer me to a cardiologist. Which I will do, once I got this under control. Actually, I should start now, since I am nearing the deductible limit, that way more of the year is not out of my pocket.

Anyways, so I have the PCP in the morning. No idea if she will want any bloodwork (they do it in office) so will be fasting. From there I have to head over to the hospital. Thankfully it is only about 15 minutes from the PCP. I have an 11am paracentesis (need to be there early for valet parking, as well as check-in). Heh, so here's one... At one point towards later November I think it was, I had a paracentesis scheduled. The hospital called me up to verify my information, insurance, blah, blah, which they should have already had on file like a trillion times by now... back to the point. Hospital called, and after verifying info, stated that my patient portion for the procedure is $380 (I think that was the figure). I said okay, as I was willing to pay it. But when I went to the appointment, no one collected it. Moving forward, this past week the hospital calls about my paracentesis coming up Monday, and tells me my patient responsibility is $1710 (haven't quite reached my deductible that I know of, but am so close that I am not paying this). I told her I couldn't afford that. They want to do a payment plan, and have me sign a contractual agreement for it. Again I said no. I am willing to do up to half the amount, as I want the insurance to catch up on the submitted bills, so when these hospitals and doctors log-in to see what my patient responsibility would be for a procedure, it is up to date. We will see what happens tomorrow.

After that, I have the afternoon free. I am debating heading over to RM's, but I know she will be working, and I don't want to sit with PT all afternoon. I joined a new website called Social Nature, and it is one of them shopping for items at the store sites. I told it what stores I shop at, and it brings up deals for products at those stores. I saw tonight it was updated, and had some salsas, and sauces in there, so I added them. Smaller product size - I think the largest is up to 16oz. Maybe I'll run by the store, grab these items, go to RM's, share one or two. I dunno.

Post opens at 4pm, so I will be heading there by that time. I do have a Riders meeting at 6:30pm there, that I am really not feeling like wanting to attend. Our Director has stepped down from the position (and his Trustee one with the Post) due to personal reasons, which I really understand. But I feel it leaves our chapter in a bit of a lurch. Still so new, we barely have members, let alone one that meets the requirements to be the Director (voting comes up in May). Our Vice Dir. will step up and fill the position for now, though he said he has no idea what he is doing. I told him I would help guide him. Our Post commander is supposed to be there at the meeting as well (he is our Treasurer for the chapter, too). That will help explain what is going on, and hopefully, give us some leadership guidance as to what we need to focus and get done right now regarding this situation. It will be interesting, but I still don't want to go.

Alright, enough from me....

PeacE

Wasted Day?

 Up early this morning. Seems the Wife had told me about an appointment, but I had totally forgot. So I guess her's is possibly the first one, as she says we need to leave by 7am. I'm only going because she asked me to. How can I say no after her going every time to the ER and stuff with me?

So, I am hoping that won't take long. I had picked up some weed eater line and an action rake this past week, and I was hoping to get some yard stuff done. I can do it, just tire out a little faster, and need more breaks. I might be too sleepy tired after the appointment, I may come home and go back to bed. Then I will end up sleeping until afternoon, when it will feel too late to start anything on the yard. Yeah, see the crap that goes through my head.

No big plans this weekend. I am keeping an "eye" on how I feel over the next few days. Want to be sure this new medication doesn't do weird things (though the side effects on the paperwork weren't major). I really hope that the beginning of this week brings my insurance company to see the light and quit fighting my medications. Starting into two weeks with my diabetic pill (still). I have one to pick up (not a new one) and I think yesterday they said there were two not ready to dispense (<30 days since refill) and two with insurance issues, that I am told are between the doctor and the insurance. I just want my meds and get better. Nothing big.

Welp, almost time to go, so I am out of here....

PeacE

I Must Apologize ....

 ... to anyone that stopped by after reading the last post, expecting an update to my Liver Dr appointment. In my meager defense, I offer up that there was enough information and next steps, that I needed a bit of time. Time to let myself think about it, "soak it in" knowing this is my problem. And let's not mention the time it took to type it out on my phone to let certain friend/family members know. I typed it once, then pretty much copy/paste to everyone minus a couple personal changes in text. But YOU don't know... so, I'm going to lay it out here. Besides, I think it will help me focus on getting over accepting this is the solution, and get busy doing it.

1.) Dr. was happy the amount being drained at paracentesis "seems" to be getting less (at least over the last couple weeks or so). Still too much, and wants me to continue weekly. Most of that is for my comfort (the weekly part) but if I really wanted to, I could change my appointments to longer periods. After this coming up on on Monday, I pretty much reach my patient expense limit, and deductible. I found out, that my patient responsibility amount, to only the hospital for the paracentesis (not any doctors) is $1710. Each. Last year, they had me prepared to bring in a payment of $371, so I must have been at last years limit at that time. But $1700?!? Crazy.... but I'm going to keep going.

2.) New medications. The Wife was able to go with me, and we brought up some of my issues with "brain fog", short-term memory issues, and my "bad days" where I Am lethargic and sleep all day. Dr prescribed a couple more medications to help with that: Lactulose and Xifaxan. Lactulose is a laxative fluid that helps the body pull the ammonia out of the system, and help the body rid it by bowels, instead of urine. The Xifaxan is a stomach antibody to help fight the bacteria that creates the ammonia. Both are to help clear up the encephalopathy ("brain fog") I have been having for awhile. Lactulose is a special order prescription, so they contact me and mail it to me. Weird.

3.) We discussed briefly a TIPS procedure, that inserts a stent that helps direct some of the flow of fluids to the liver, to basically be sent back through the body. It reduces the pressure/stress on the liver. However, at this time the Dr wants to wait a couple months. With the recycling of fluids through the body, the risk for other issues coming from something in the fluid is higher (like a 2nd merry-go-round for a bacteria). I agree to wait a couple months for further discussion.

4.) Transplant. Oh boy. This is one I really do not hope I will need. Obviously it is more of an end-stage, and all those requirements, dotted i's and t's, and a viable donor is all needed as well. To even get on the list, one has to be sober for six full months (that will be March for me), and pass all their rules/requirements/tests. I am not sure what all is involved in starting that process, but that is what we are doing. The Dr said it is better to get the preliminary processes of the transplant out of the way, as if the need were there for a speedy transplant as soon as March hits. I ain't that bad off as of right now. But Banner University will be contacting me to setup a starting appointment for paperwork and the basics, and who knows from there.

Overall, my good days have been coming more frequently than the bad ones. Still having issues with fatigue (constant) and nausea (comes and goes - no pattern), and of course, the fluid build-up in the abdomen (hopefully getting better - as in reducing). Guess for now, we will see how these two new meds affect my system and go from there.

Welp, that's pretty much what all I can remember from my head. My notes pretty much have the same stuff. No idea what the Wife would offer up, as she catches important details I miss - that's why I take her to the liver doc. 

Until next time,

PeacE

Easy Day with an Edit

 Late this morning I have an appointment with the Liver Specialist. Followed by a blood draw in his office. Yesterday I was thinking, it will be done by close to noon, maybe RM could meet up for lunch at Red Robin. I texted, but no answer yet. I know she had an appointment today, as well, but not the time, so she could be at that right now. So, maybe today would not be a good day...it was just a thought.

At near 8:30am I woke from my cat nap to see that the Wife was still in bed. Thinking she had overslept, I woke her. I guess she is coming to my appointment as well. I wasn't expecting that. Well, she could join us for lunch as well - but no PT. I asked when she was going to tell me she was going, and she said she had. That she has the full day off work for this appointment, as it is one of the more important ones, and I had asked her since we made it last month, to see if she would go with. I never seem to know the right question to ask, or to give information that isn't specifically asked for. Plus, she'll help me remember until I can get it in writing (my med journal, or whatever). Cool. Added bonus.

After the lunch (because I am fasting, I will need to eat ASAP out of the appointment) I suppose I need to run by Home Deport and get some weed-eater trim line. Thinking about an "action rake" as well. At least that is what they call it. I call it a hole rake, or a loop rake. We need one to help get the area between our drive and the neighbors. It is only 4-5 feet wide, and from the street to the fence 20 yards maybe? Well, the neighbor had some hard times, and ended up getting their house basically remodeled and re-wired. At the same time, being elderly I suppose, her Daughter and husband were moving in as well. She had her driveway widened a car width with paver stones. Only, it went over the existing drive as well, and now there is a 5 inch drop from her drive, to that strip of land between us. She complains if the grass gets over 4 inches, and that it 'trips her up' and we wouldn't want her falling on our property due to negligence. Half that ground is covered by the sand/soft dirt the work crews used when doing the drive (over a year ago) so I figure just scalp the ground. Eventually we want to lay some little river rock there. Work in progress.

Just got the Wife up. Need to leave here in about an hour to be there early to make sure they have my new insurance information. 

The hospital called me yesterday, regarding my appointment on Monday (paracentesis). They ran the 'patient responsibility' from my insurance, and gave me a figure I need to pay out of pocket for the visit. Mind you, this will be the third one this year already, and at the others, they could not access the site (or whatever) where they can look at my benefits and determine deductible/pt responsibility. It is basically $1710.00 for Monday's draining. Triple that, and that is just what I owe to the hospital facility already this year (not counting doctor feed within the hospital yet). Obviously, there is going to be a bit of a payment plan. Getting closer though, to the $4K deductible/$6K OOP.

Anyways, need to move on to some other things this morning. Watch for maybe an edit later, of what the doctor tells me. Or I may have to wait and figure some things out first. We will see....

PeacE

My Chemical Romance

 I don't know if there is actually anyone that reads this drivel, that would actually know the band in the Post title. Maybe have heard of the name, but the music as well? Doubtful. Either way, those were the first words I thought of when I sat down and asked myself what should the post title be today. Hidden meaning? Double entendre? Maybe a little of both? Well, let's take that short walk that was yesterday, and maybe you'll figure it out ...

Got up 8am and did the routine. I double-checked the SSA website, directing me to this particular SSA office, to verify address as well as they are accepting walk-ins. I don't get over to the NE area of Phoenix that often, and I still have no desire to do so. I was still a few miles away when - road construction. Three lanes into one, I'm still, literally, almost a 1/2 mile from the light (of several to go through). No, no, no. Took a side street, went up to the next main road and continued on. Got there in 5 minutes from there. Roll up to the SSA, seeing lots of cars and several people in the parking lot. Yep, surely they are open. Start to go inside, and am stopped before I even get to the security check-point by a gal handing out a flyer. They are NOT taking walk-ins. Physical interviews are for only extreme situations, otherwise you have to call some number and set up either a video, or phone, appointment. Sigh. I asked what the time frame for an appointment for the disability application process, and she said a few days. I sat there in the foyer and called. Robo-witch told me it was going to be a 30 minute wait. Nope. Not here. I left.

On the way home, a different route as to avoid all that construction, led me into ... more construction, just as bad. Finally got to 'My side' of town and picked up scrips for the Wife and I. Got home and made the call to the SSA. Forty minutes later, I have a phone appointment around 10:30a on the 21st. At least it is only a week out. So I am tossing all the stress/worry/angst over the disability filing out the window for right now. It is completely out of my hands until the 21st.

Attended the general Post/Aux meetings last night. I was pulled into several conversations before and after, regarding the Riders Director stepping down. I had no answers. All I heard were speculations. Either way, come Monday's meeting, I am sure I will be stumbling a bit as we try to see where the Director left things (gave me no paperwork of anything for the Chapter). I was a bit relieved to hear our Treasurer, who is our actual Post Commander, will be at the meeting, and will be much help in helping us re-focus. I also checked with the Adjutant as to monthly reports - as in finding out what ones we are supposed to turn in. I am guessing that is a role I will take over, since of the two reports, one is my minutes. Sigh. More work.

So you sorta see how my day went, which is a bot crazier than normal for myself. I was a bit frazzled last night. Tried sleeping for a couple hours - nope. Took one of my edibles, and I can still feel that thing working this morning. One of the scrips I picked up was for me, and was one of the ones I ran out of last week. So I took those pills right away. Still no Rybelsus. When I asked, was told it is between the doctor and the insurance. Just great. Sigh.

Popping some pills that I was off of a few days, while already feeling off-balance due to being out of 2 scrips, throw in the remnants of the workings of my edible, and all my medical in general.... yeah. It's Chemical alright.

Had an email come in late last night from the Daughter. It is that time again, and I urge you to hide. Girl Scout cookies are out for ordering, and my Doodad has already hit me up via text and email. Doesn't she know Papaw isn't supposed to have that stuff (the sugar-free ones are nasty). I am sure the Wife will be buying a couple cases, and taking many to work.

Welp, I think I got nothing else for now. You know what day of the week it is ... and I have nothing planned (I hope - need to check my calendar and notebook).

PeacE

PeacE