The "The First Sign of Spring:Las Vegas Style", edition.

Good Monday morning!  As of today, I've been in Las Vegas an entire 18 months.  There is always something happening here. But some events are larger than others. Much larger.  The first of the large events starts this weekend. It's NASCAR week in Las Vegas. It's a huge deal here. But NASCAR is a huge deal. The race piqued my curiosity last year because of all of the local coverage. Also, 2 of the top 10 drivers are from Las Vegas, Kyle and Kurt Bush. Yes. I know who they are. During the race season it's nonstop coverage. I also think it's covered so much because there is not a professional sports team here. I digress. And I'm going to digress even more. Somehow I got on an Outback Restaurant email list. And every week they let me know that if Kevin Harvick placed in the top ten that week, I'd get a free Bloomin' Onion. After a while I'm listening to hear where Kevin Harvick placed. And darned if he didn't place in the top 10 every week!! Lol. For the record we took advantage of this offer one time. 

Last year, a few weeks after the race, The Kobolt 400, I was curious about the race track. I'd been here for a while and have been visiting Las Vegas since 1999 and had never seen this NASCAR race track. So Brian and I drove north on Las Vegas Blvd to find the race track. During the drive we also found Nellis Adair Force Base. Anyway. The race track complex did not disappoint!  I'd been to the Michigan International Speedway (yes, back in the day I dated one of seven black guys in Michigan who was into that. Lol lol). MIS looks like a toy field compared to the race track out here. Which explains why the NASCAR week is such an event. 

The complex itself is huge. There are several race tracks. But the main raceway!  Wow!  We saw several police groups doing driver training, motorcycles and cars. We also visited the NASCAR store. The race track is on the other side of town from the strip and downtown. It took us about 30-45 minutes driving with no events going on. I couldn't imagine how traffic must be during the race weekend. The good news is most packages include bus transportation to the venue, with some boasting a shortcut through Nellis AFB. Huh?  Ok. Anyway. The race will consume all of Las Vegas. The first event of the season!  Heh. We're staying off the strip and Las Vegas Blvd in general!  

On the dialysis front, deep water fitness starts tomorrow. I'm looking forward to it. I'm looking forward to brining my stamina up to speed. But I really need to at least try to accept that I'm going to get tired. But that just pisses me off.  Ugh. I push myself until I almost pass out. But...well anyway. And finally we were on the hunt for honey butter. Finally found it at my last chance store. It was the second time we had difficulty finding something that shouldn't be hard to find.  But then again I'm in Las Vegas.  Lol I found a zillion varieties of honey at Whole Foods, though. And don't get me started on finding Gruyere cheese.  I can get tomato paste in a tube, though. And I know where to get chicken feet....no I can't think of a use for chicken feet, but I know where to buy them. Anyway. 

The weather is marvelous. I'm back to sandals. The air conditioner is on.  Feel free to visit!  Have a wonderful day!!!

The "I Live in Paradise", edition.

Good Friday morning!  Yes. I live in Paradise, but it's not what you think.  We learned last year that we don't live in Las Vegas, but rather in the township of Paradise. That's right. I live in Paradise, Nevada!!  

"Paradise is an unincorporated town^[1] and census-designated place (CDP) in Clark County, Nevada, United States, adjacent to the city of Las Vegas. The population was 223,167 at the 2010 census.^[2] As an unincorporated town, it is governed by the Clark County Commission with input from the Paradise Town Advisory Board. Paradise was formed on December 8, 1950.^[3]

Paradise contains McCarran International Airport; the University of Nevada, Las Vegas; and most of the Las Vegas Strip. Paradise contains most tourist attractions in the Las Vegas area, excluding downtown. Despite this, the name Paradise remains relatively unknown. All Paradise ZIP codes have Las Vegas mailing addresses." 

The actual city of Las Vegas is pretty much downtown. Apparently "Las Vegas" is made up if a bunch unincorpated towns. Other townships include Winchester, Spring Mountain and Enterprise. There are signs to "welcome" you into these townships. We discovered we didn't live in Las Vegas during the mayoral election. I guess our governing body is the Clark County Commision. 

Ok. With that being said, it feels like paradise, and it's all relative, to my home state. It's unseasonably warm, meaning the high temps are in the mid 70s. And. The weather casters have conceded that it looks like we've got an early spring. It's weather like this...and reading about blizzards in the Midwest,  that underscores my decision to move out here. But I can't gloat. I will be whining starting in June when the temps will go over 105. However. I am enjoying the weather now. Dad and Brian have been hitting the jacuzzi in the afternoons. I'm not ready yet. Lol. 

I've got planning to do and I'm paralyzed by the cost of my medications. I should just go and bite the bullet.  I use a mail order service...conveniently operated by the dialysis corporation, Davita.  If the cost of the prescriptions exceed $500.00, I must pay before the meds are delivered. I am not eligible for payment assistance. Brian and Dad tell me to be thankful I can afford the drugs. But really. I get financially seized up for 3-4 months until I can get out of this dumbass Medicare donut hole. I still haven't seen any good reason for it except to ensure the pharmacy execs get paid. Thank you George Bush. Oh yeah. Last year I could get a discount if I paid by credit card. This year I received a letter from Medicare saying they no longer allowed it. Yep. Let's cut those "entitlements". Apparently we're not entitled to live. I digress. 

Ok planning for what?  The sorority is have a formal dance. I need to get my dress. And my shoes. And my accessories. We're heading to Augusta, GA and Edgefield, SC to visit Shawn. I need to make the airplane reservations, hotel reservations and car rental reservations. I've already notified the clinic, but I have to give them the hotel information so they ship some stuff. We also have to contact NxStage (home hemodialysis machine company) so they know where to ship the dialysate and cartridges and whatnot. Immediate plans include hosting a meeting for another organization I belong to next month.  And I'm hosting Easter dinner for my seniors, of course!  Whew.  

Nothing special on dialysis, but I did treat you to "the rant of a dialysis patient". That's it for today. I guess I'll bite the bullet and order the meds. But really. Who wants to charge $500+ on their credit card. Ugh. Anyway. Have a great weekend. :-)

The "Being Your Own Medical Advocate", edition.

Good Wednesday morning!  The caucuses are over and that means we're done seeing the ads....for a while anyway. Whoo hoo!!  Apparently the republican caucuses were just as chaotic.  A lot of people don't like the caucus process. Especially compared to how we vote out here. We have a 2 week window to vote and are not limited to a specific location. The last time we voted was a few days before  the official date of the election while we were at a mall on the other side of town. 

I am my best advocate. When I was told my kidneys failed, I was just relieved to know what was wrong with me. When I was told I needed to start dialysis immediately, I didn't understand what dialysis was, but I assumed I'd feel better if I did it. Even in my barely coherent state I was asking questions. When the tech rolled the dialysis machine in, the first thing I asked was, "Does it hurt?".  While still in the hospital, I'm taken to get a catheter inserted in my chest, I asked questions to nurse who prepped me. When the surgeon came to talk to me about the procedure, I asked questions. I even asked how many times had she done the procedure. Don't laugh. This was all so new and foreign to me. Ok. You can laugh.  Lol. 

A lot of stuff was being thrown at me and at one point I just stopped everything. I was being scheduled for procedures. Orderlies were coming to take me for procedure and no one had told me about them. I refused to go. That brought the doctors out!  Lol. At the time, my primary care physician ended up being my advocate. He'd been my doctor for over 30 years. Yeah. I caught him just a few years out of med school. Anyway. The nephrologist visited 2-3 times.  And of course I had teams of residents and interns, and I asked questions. But I still didn't understand the enormity of what was happening. Brian brought me my iPad while I was in the hospital. I started to research End Stage Renal Disease (ESRD) and dialysis. What I read freaked me out. I could barely read the information. But I did. Call it a necessary morbid curiosity. 

I was told I'd be on a renal diet, but by the day of my discharge I still hadn't met with a dietician. I asked to see one. She gave me a basic overview, but I was underwhelmed. I read up on it on the Internet. Once I started incenter dialysis, I had more questions. I also researched like crazy.  This way I filled in blanks of my knowledge by asking my team questions. As an aside, I was fortunate to go the dialysis center I was sent to. The staff was quite helpful in helping me to understand a lot of things. The doctor, nurses, techs, dieticians, social workers and even the front desk people helped. They were always available to answer questions. Or find the answer for me. My move to Las Vegas was a culture shock. A few of the staff seemed to have a problem with the patient (me) asking questions. I guess some places didn't appreciate a knowledgable patient. Tough shit. 

So here I am. 3 1/2 years later. Still researching and still asking questions. That's how I ended up in home hemodialysis.  So where am I now?  On a whim, I started researching ESRD, hemodialysis and porphyria cutanea tarda (PCT). What's PCT you ask?  Remember last summer when the skin on my hands was tearing and blistering?  Well that's PCT. officially diagnosed by a dermatologist. Woot!  Something else to add to my medical resume. I digress. I did the research. And guess what I found? Iron exacerbates PCT causing flare ups. And what injections do I get at my monthly meetings?  Iron!  Sometimes 1 vial, sometimes 2 vials. People with no kidneys can't create iron. Talk about being caught between a rock and a hard place. :-(  I mentioned this to my team. The nephrologist suggested that since my iron level was still in the acceptable range, even though it at the low end, that we hold off on the iron this month and see how it goes. Now I will still get iron, but not necessarily every month. This will be like an experiment. He wants to make sure that I have enough iron to do stuff. Like swimming. I understand that he doesn't want me passing out in the pool. Brian agreed. Hell. I agreed!  Lol. 

My point is, I researched. I talked to my team about it. And they listened. And worked with me. I also started clotting this week. Time for an angioplasty. Think of it as fistula maintenance. And that's fine. I called my nurse to let her know it was time for the angioplasty.  I couldn't get an appointment until Friday. My nurse and I discussed treatment until I could get the angioplasty. The danger is the clotting halts dialysis. And I'm not trying to not have treatment. Isn't that odd?  I hate dialysis. HATE it. But I don't skip treatment.  Ever. It really a case of life or death. Anyway. We've adjusted some meds and I haven't clotted since. And have continued treatment. But I advocate for me. 

Now you may not have anything like ESRD, but you still must always know what's going on with your medical health. Know your meds and interactions. If you're diabetic or hypertensive know what you need to do and ask questions and research. If you think something is not quite right, ask questions. Be your own medical advocate. The health professionals mostly are quite helpful and knowledgable, but they can stumble...not deliberately..  It's up to you to know you best. Don't ever be afraid to ask questions or reject something even if you have to do it forcefully. 

That's it for today. Got the manicure and pedicure yesterday.  My toenails are the most perfect shade of purple!!!  I've been threatening to try one of the many foot spas out here. A foot rub is a wonderful thing!!  Have a wonderful day!! 

The "Experiencing a Caucus", edition.

Good Monday morning. In the last entry I wrote about what I was told about the Nevada caucus. And Saturday, I essentially live blogged the experience on Facebook.  I need to tell you that I'd recently installed Facebook on my phone. Brian asked why did I do it?  I was shamed into at the AKA Founders Day.  Lol.  I got my fair share of "looks of judgement".  But it worked fine for my rants yesterday. :-)

The good news is we convinced Dad to attend the caucus. He mentioned that the upcoming election will be his 18th presidential election.  And he'd never missed voting in an election. But he'd never participated in a caucus. And in his defense, Nevada started the caucus process on 2008. Armed with our location and the time the doors open, we set off to the nearby middle school. Doors opened at 11:00 and would close at noon. If you are in the line at noon you will be let in. 

We arrived at the school around 10:30 AM. Uh oh.  The parking lot is full and a line is wrapping around the school. Brian drops me and Dad off at the school and we get in line. Brian parks in the overflow lot, which is actually the parking lot at the nearby mall. No, I don't know why the school is backed up to a shopping mall.  Good thing the weather was nice. Low 70s nice. We moved to another line because Brian and I pre registered. I tried to register Dad earlier in the week, but we found out that he was not a registered democrat, so he stayed in the long line. 

However I can only stand so long. Dad can stand forever. Lol. I went to sit on a bench. While talking to a guy there, he mentioned that the preregistration line was also the line for the handicapped. And basically the handicapped voters can go right in. I told Dad to go in. Not that being 89 is a handicap.. And he's clearly not disabled, but really. Who is going to let an 89 year old WWII veteran wait in line?  He marched right in and got taken care of. Brian and I made it in about 30 minutes later. 4 people registering us. The preregistered line really did move fast and smoothly. We had a registration number we got when we registered online. I gave them the printout with the number on it.  Or as the young kids flashed the number on their "cracked" phones (lol). The number was typed in, then it was  validated it was me and then I was given a ballot with my precinct number on it. I was then directed to my precinct room which in my case was the school cafeteria. With 2 other precincts. Noisy. 

We got to the room and Dad was nowhere in sight. He eventually wandered in. He went exploring the school and got lost. Lol. The process couldn't start until everyone was let in. Everyone finally got in by 1:30. Yes. The line was that long. And yes there really were that many people. And yes I think that it was fantastic that so many people wanted to participate. In addition, there was a fair share of people who did not speak English..Hispanics and Asians. And a fair number of young people (yay!) And people wore their candidates  loudly and proudly. And yes people were trying to persuade others to shift to their candidate while we were waiting. The act of persuasion is not an official part of the caucus. In a perfect world, we would not be waiting 3 hours for the caucus process to start. 

So we're inside.  For the most part the Hillary and Bernie folks sat together and got along together. I did encounter a particular rabid Bernie supporter. What I observed is that more than quite a few Bernie supporters have a strong dislike for Hillary. Strong enough that they would rather vote republican or not vote at all. That's a problem.  It was not a majority. But still. And yes, you know your Pat got into it with one of them. But he was spewing venom and he just needed to be called out. The caucus wasn't the place for that. Especially if the goal was to attract people to Bernie. And Dad was jumping in. Rofl.  Anytime someone tried to convince us Bernie was the better candidate, my Dad turned into a hard nose. Don't argue with smart old dudes!!  

Once everyone was let in the process started. The temporary precinct caucus  chairman read procedure stuff to us, then read letters from Harry Reid, Dina Titus (Democratic congressional rep), some other guy, Bernie Sanders and Hillary Clinton. Then more rules were read, they told us how many delegates would be allocated from our precinct. And then finally. We separated into our groups. We seemed overwhelmed by "feel the Bern". Well the final allocation of delegates out of 16 were...7 for Hillary and 9 for Bernie. Well that wasn't too bad. But guess what?  We had barely finished....around 2:30...when notifications came in that Hillary had won the caucus!!!  Woot!  Though that brought down the Sanders folks. They felt the burn?   I'm sorry (hangs head). 

My conclusion still stands that the caucus process is awful. So many people are left out. While making the telephone calls for the Clinton campaign we discovered that a lot of the elderly couldn't make it. Others had medical issues. People were out of town. People had to work. I'm pretty sure my barber wasn't going to close his shop to participate in a caucus. And I don't blame him.  Orthodox Jews, Seventh Day Adventists and other who have Saturday sabbath won't participate. And the process is confusing. I would have preferred going someplace to vote or even voted absentee.  But this time , I spent a long uncomfortable day just to stand on one side of the room for 15 minutes to indicate who I wanted for a candidate. And what about those who prefer the secret ballot. Who'd rather that others don't know how they vote?  Nah. Caucuses suck.  

If you have any questions about the Nevada caucus  please ask. That's it for today. It's a long entry. I'll update you on dialysis news on Wednesday. Have a great Monday!!!

The "We Caucus Tomorrow", edition.

Good Friday morning. We caucus tomorrow. The good news is the political ads will taper off. The Hilary and Bernie ads have been constant and unrelenting for a while. The republican ads ramped up within the last 2 weeks. Except for Marco. His ads have been running for as long as Hilary and Bernie. And finally Trump's 1 ad started this week. Every candidate has multiple ads. Trump has just 1 ad and it's brilliant. It's a black father, who supports Trump, whose son was killed by an immigrant. Cruz's ads are creepy. No Carson ads.  And Jeb has some retired military brass saying he's the guy. One of Bernie's ads has what I called hippie music. After checking on Shazam, I found out that it's Simon and Garfunkel , "America".  Of course Brian knows the song. Lol. Anyway, the ad is like Coke's ad from long ago, "I'd Like to Teach the World to Sing". 

Ok.  On to caucus. There is a fundamental flaw in the Nevada caucus. It's open to everyone, but not available to everyone. What does that mean?  The caucus is Saturday at 11:00 AM. To participate you must show up. No absentee ballots. If you're sick, or have mobility issues you cannot attend. If you celebrate sabbath on Saturday you're SOL. You need to be proactive and find out where you caucus. Since it's not a state activity, you don't get a notice as to where you go. Like in Michigan, where we get the notice on where we go to vote. 

I bet you also thought the people debate at caucuses. Maybe, but not in Nevada. The process in a nutshell is .. You show up. You go stand in your candidates corner. If there is a viable number of people In that candidates corner, a calculation formula  is performed and a number of delegates is assigned to the candidates. Then the delegates head to the county democratic convention, then state democratic  convention, then national democratic convention. It's all about the accumulation and division of delegates. That's it. They anticipate the actual caucus process should take no more that 45 minutes. 

Today will be our final time to make the calls for Hilary.  We are finding that most seniors cannot make it, as much as they'd like to participate. We've convinced Dad to come with us, but we're still trying to explain the caucus process to him. He's all in though. :-)  I'll let you know how it went next week. 

Saw Deadpool. Loved it!  Keep in mind that Deadpool is an anti-hero, not a villain. Wednesday is senior day at most casinos and a lot of the casinos have movie theaters. Tickets cost $4.00. Concessions are discounted also. We went in asking for a drink and 2 small bags of popcorn. However, it was more cost effective to get the special...a large wheelbarrow of popcorn, with refills (!) and 2 drinks. Before we could even comment, the counter guy tells us that he'll not only give us the tub o' popcorn, but will also give us the refill also. So we head to the theater with a tub of popcorn and  two 1 gallon zip lock baggies of popcorn.  ROFLMAO . That was Wednesday. We still have a bag and a half of popcorn. And that's with me, Dad and Brian copping handfuls.  Lol. Lol. I guess we don't have to buy snacks..just go to the movies every Wednesday for a week supply of movie popcorn!  

Dialysis is ok. My hemoglobin dropped again. And again I need to up my protein. I go for my monthly appointment, I bet I'll need the iron injection. Ick. And. I'm in the Medicare donut hole. Right on schedule. The pharmacy called to let me know it was time for a refill and it will cost $452.00. *sigh*. I told them I didn't want to deal with it at the moment and will call them back next week. Even my cheap med rose to $32. Again, once I pay the deductible, around $4,000.00, I'll be in the catastrophic category and the costs will be reasonable. The $452 med will drop to about $30. I guess the category is called catastrophic is because by the time you've paid $4,000 for LIFESAVING meds, your bank account is crying. Yeah, I'll be complaining about this forever. One day I'll explain the tiers of payments for drugs in Medicare. It doesn't have to be so complicated. I guess the medical companies need their yachts. 

That's it for today. I had my glass of Stella Rosa Rosso wine yesterday. Delicious!  And I'm not a wine drinker. I guess I could be on now!  Have a great weekend!!  

 

The "Denise Matthew's (Vanity) Death Hits Close to Home", edition.

Yeah I know. It's Tuesday. Doesn't happen often.  But the death of Denise Matthews, formerly known as Vanity hit me hard. Not because I was a diehard fan,..and yes I preferred her over Appolonia and I thought she was much prettier. But it was how she died. I recall hearing about her kidney failure awhile ago. Long before my kidneys failed. It was one of those things you note and file away while reading and move on. 

When I read she had Sclerosing encapsulating peritonitis, I understood what she'd been through. I'd just mentioned the young man from Dialysis Discussion Uncensored (DDU) dying. Well this is exactly what he had. His mother detailed what he was going through as a patient and what she did as a caregiver. It was 18 months of pure hell and organs failing. And. I believe this is the same condition that took my Wendell in 2014. 

Sclerosing encapsulating peritonitis is a direct result of doing peritoneal dialysis (PD) or an extended length of time. I know I've gone over this before, but I have newer readers who may not know what this is. The short definition is "A soft plastic tube (catheter) is placed in your belly by surgery. A sterile cleansing fluid is put into your belly through this catheter. After the filtering process is finished, the fluid leaves your body through the catheter.", National Kidney Foundation. 

Peritoneal Dialysis

The problem comes when this modality, type of treatment, is used over an extended period of time. I've heard that 5 years max, as the membrane gets weaker over time. In addition because the tube is going into your stomach Asceptic procedure is so very important. The chances of infection are high. For the record, I almost chose this modality. Wendell had talked to me about it and even invited me and Brian over to his house to show us how it worked. I'd even went to an appointment for assessment. Several things stopped me. First, the exchanges on PD occur several times a day. Strike one. Second, my ability to swim would be limited because, you know, there'd be a hole in my stomach. And third my tech at the time told me I'd have a continuous belly because of the fluid exchange. Being the vain person I am I just couldn't have that!!!  Besides, I already started the surgeries for the fistula in my arm. 

Now PD is better than incenter and my Wendell just didn't like needles. Lol. And sclerosing encapsulated peritonitis is quite rare. But. Since I've become aware of it, I now know of three people who've died from it. And having watched my Wendell deteriorate, and going through the journey with the young man in DDU, I am incredibly saddened to know what Denise Matthews went through. So now I'm going to give some details about this horrible side and side effect of dialysis.

Symptoms include bowel obstruction, abdominal pain, abdominal distention, nausea, vomiting, abdominal mass, malnutrition, and failure to thrive. In addition the bowel wall may thicken. In the case of the young man from DDU, the wastes could no longer come out of the bowel, so fissures opened up and wastes and bile were coming out of these newly created openings. This increased the chance of infection.  And constant maintenance. In addition, the wastes would come in contact with the skin and continually irritate the skin...which was a constant burning pain. And on top if all of this, he still had to do dialysis. 

His body just couldn't handle it. As of last weekend we were informed his liver was failing. And the week prior the doctors had told his mother there was nothing more that could be done. She was in the process of looking for hospice....but he died. And here's a bureaucratic, money grubbing issue she ran into. The hospices wouldn't accept him because he was in a feeding tube. They wouldn't pay for that. But if he could feed himself, then hospice would accept him. So. If he went to hospice, he'd starve to death. At this point I have the urge to rant against those who would want to get rid of Obamacare....but I won't. 

Finally, I won't have these complications. I am not on peritoneal dialysis, nor will I choose that option. And understand that many people successfully go years on this modality. But the risks are too great for me. 

I hope this has helped to understand what Denise Matthews (Vanity) went through and also understand why I felt the need to explain what happened. I think I've said before, dialysis is not for the faint of heart.  

Have a great day. Cherish your friends and family. Tell them you love them. 

The "Valentine's Day" edition.

Good Monday morning. I heard Michael Henderson "Valentine Love" yesterday. Or was it Norman Connors?  Anyway I hadn't  heard it for a while. Good thing I was alone in the car. ;-)  Cranked up the volume and sang my heart out!!!  Oh yeah. I was driving alone yesterday. And not was I only alone, I was way across town!  Yeah. I'm feeling better.  For the most part.  Sometimes riding in the car in the sun affects me. Where did this come from. Geez. It's got to always be something. My blood pressure is still low, but I feel fine. Eh 

Brian surprised me with a bouquet of flowers on Friday. Ok. Brian is not a traditional romantic type of guy. And that's fine. Romance doesn't fit him him. No poetry recitings there. Lol. In his defense, I'd probably chuckle at romance.  But here's the thing. He has his own brand of romance. Like making the coffee every morning. And bringing me a cup.  Or fixing dinner for Dad when I was ill. Or helping me step off a curb that's a little too high. Or making sure I have my Spicy V8. Or being my sous chef.  His knife skills are amazing!  He sets up my dialysis machine and orders equipment.  I could go on, but I think you get what I mean.  He is my Valentine's Day love. And Valentine's Day is everyday. Ok. Enough. You know I'm crazy about him. I'll stop.  

We went to Hush Puppies restaurant Saturday evening for dinner to celebrate Valentine's Day. Catfish and shrimp aplenty!  I had a meeting on Sunday and planned to do treatment Sunday night. I know. Home hemo is flexible. Why didn't I just skip Sunday. Well. We got a late start on the machine prep on Friday and we missed treatment on Friday. That screwed up the schedule. We'd just got back on schedule after fiddling with it last week. Anyway. I missed Friday night so we did treatment Saturday morning. And I didn't want to skip any more days. It's fine. 

Finally the members of the Facebook group Dialysis Discussions Uncensored (DDU) received the news that we didn't want to hear. The founder of the group died yesterday. I mentioned in my last entry that his doctors gave him 6 months. His body just broke down. Organs failing in succession. In the end it was all about pain management. His mother was his primary caregiver. She kept the DDU community updated on all the good, the bad and ugly. We went on the journey with the young man and his mom. It was heartbreaking. And of course we got the news of his passing hours after being informed of the death of another member of the community. I shed tears when I read of the young man's  death, even though I knew it was coming. I feel for his mom. When I say caregiver, she performed dialysis, drew blood knew what the numbers meant, administered the feeding tube protocol, changed wound dressings.  His bowel had fissures, so she was cleaning waste and attending to those areas. 

I don't know where my ESRD will lead me. I know the process of dialysis ravages my body. It's killing my heart.  I walk a fine balance of drugs to keep my phosphorus, potassium and calcium levels normal. Trying to artificially do what what kidneys do. To much potassium and there goes my heart. Ah well. All I can do is follow what I can. I am doing fine for now and enjoying myself. I had the best red wine yesterday, Stella Rosa. I normally don't like red wine. But this?  Mmmmmmm. :-)  

Photo of yesterday's sunrise. This morning's sunrise was similar.  

The "Kidney Disease is Not For the Faint of Heart", edition.

Good Friday morning!  Just being pensive about kidney disease today. I belong to several groups on Facebook. At least 4-5 dialysis groups, with 2-3 specific to home treatments. Anyway the discussions ebb and flow. Sometimes it's quiet and sometimes there is a lot of activity. Right now they all seem to be on fire. The founder of one group is headed for hospice. He has been told he has 6 months. He's 39. His mother has been taking care him for the last 15 months as his condition has deteriorated.  She's been told by the doctors that there is no more they can do. Time to follow the Advance Directive (do you have one?) and the Do Not Rescititate orders.  

People don't want to go to treatment.  Some for the day or some just want to quit. That comes up often. I understand and don't judge. There have been people who just gave up and went to hospice. And we never hear from them again. Members get upset and try to talk the person out of their decision. My take is, I really don't know what that person is going through. I clearly have bad days and some nights I hope I don't wake up. We also get daily updates on partners and children dying. And people who have left for the center via EMS, never to return. Death is constant and unrelenting. As is suffering on scales that seems incomprehensible. 

There are many discussions and arguments about the different modalities...home hemodialysis, incenter hemodialysis, peritoneal dialysis and nocturnal dialysis. Oh yeah. I haven't talked about nocturnal have I?  I won't go into detail right now , but yeah, it's nightly. Again, people get passionate about their modalities. I try hard to not judge people because they are afraid. I got over my fear and squeamishness because I knew home hemo is better for me. But I understand the hesitation of others. 

Someone mentioned the dirty looks they get when the park in a handicap space or when they need to use the electric carts in a store. Most of us don't look handicapped. But trust me. We get tired. We are weak. We try. People also post some pretty graphic scars and procedures. Or lots of bloody photos. And a few people get upset. But here's the thing. The photos are a part of dialysis. We have some pretty gnarly surgeries. And can have some pretty ugly side effects. Our bodies get ravaged. Needle tracks and aneurysms. And the photos may be hard to look at, but it's part of the package. Sorry. Lots of blood doesn't faze me. And the other day when Brian forgot to clamp one of my lines, we had a fine bloody mess. Eh. It happens. 

I'm not sure Brian is used to seeing me pick the scabs off my buttonholes. Or watching me insert the needles. And he doesn't flinch when I have trouble finding the track and it looks like I'm stabbing myself haphazardly. It's just part of the process. And clearly not for the faint of heart. My virtual warriors, we support each other. When no one else understands what we're going through, we have each other.  And 2 of the groups have over 10,000 members. That a lot of dialysis. 

So it's Valentines Day weekend. We're going out for dinner on Saturday, my night off from home hemo. That's about it. The weather is gorgeous. Unseasonably warm. :-)   People are wearing shorts. This. This is why I moved out here. Love. It!!!!   Lol. Have a great weekend!!!  Oh and let me state...I'm doing ok today.  Really.  Just being thoughtful about dialysis and what others are experiencing. We really don't know what others are going through. Please don't judge. 

The "Lots of Chicken Wings!", edition.

Good Monday morning!  Well, we've started our volunteer work for the upcoming Nevada caucus. The previous week we stopped by the Nevada State Democratic Office to make sure we were eligible to participate in the caucus.  We were. Well, we are for sure now.  The criteria is to be a registered Democrat in Nevada. And you register for the political parties when you get your drivers license. Neither Brian nor I recalled if we made a party declaration when we got our Nevada licenses. We filled out the forms at the office and now we're good to go. 

The next we stopped by Hillary Clinton's campaign office to get a bumper sticker....I felt the need to offset the Trump and Carson bumper stickers I was seeing.  Long story short, the nice young lady managed to talk me and Brian into volunteering. Well, okay. I hadn't volunteered since President Obama's 2008 campaign. And hadn't done phone calls since Shawn was 2-3.  That's a story for another day!  So on Friday and the next 2 Friday's we'll be calling folks...for an hour. They tried to get more days and hours, but we stood firm!   Lol. 

We also attended a session on how to caucus because we just didn't know. The mechanics are fairly easy and the session lasted 45 minutes.  Oh yeah. We also found out that we some how became precinct captains.  :-/  Sheesh. All I wanted to do was to be prepared for the caucus. How does Nevada caucus?  Long story short...once you select your candidate, you cannot change (!).  The basic reason for the caucus is to allocate delegates.  And this process continues through the county and then state level. 

How'd the calls go?  Our supervisor is a young exuberant Hispanic guy. The first call he made entirely in Spanish. He also was contacting casino workers. Special arrangements have been made to accomodate them. Remember the shifts are 24/7.  When we actually reached people the responses were pretty ok. One guy asked why I called him because he was a republican. I apologized and ensured him his name would be removed. A response Brian got was no, because Hilary takes money from Wall Street. I got a fair share of seniors who for a myriad of health reasons cannot participate.  It was an interesting experience. We have 2 more sessions to go. 

Ugh. I just lost a lot of paragraphs. But.  Since I'm doing treatment this morning, I suppose I can retype.  If I can recall my thoughts....

Chicken wings!!  Bear with me. I'll get there. Dad received a call Friday from Pauline's cousin that she was coming to Vegas. Dad asked me if she could join us for the Super Bowl. Of course!  We hadn't shopped for our goodies so we adjusted our quantities. Especially since dad said the cousin liked to eat. Instead of 2 bags of chicken, 3 bags. And instead of 1 pound of shrimp, 2 pounds. And we figured out buying the cooked shrimp from the butcher counter is the better option.  So we just buy a jar of cocktail sauce. Well, the cousin decided not to come over. Ack!  The chicken wings could stay in the freezer.  But no way could we eat all of that shrimp!  An easy jambalaya is in my future.  

Back. I'm doing treatment now.  Because after the long day yesterday....Brian walked a 5K in the morning, we fixed breakfast. I cooked chicken wings. Lol. Baked in batches then made honey-hot sauce wings and sriracha-soy sauce-brown sugar wings. I intended to make plain wings, but Brian and Dad saw them sitting out and scarfed them down. :-/   Lol.  Anyway. And we moved treatment day because the game ended late.  Well. Too late for us on the west coast to start treatment. I'd have been on the machine until midnight.  But more than anything, we don't need to be tired doing the treatment. We can make interesting mistakes when we're not tired. Lol. Let's not take chances. 

Before I'd lost half of what I typed I whined about how much I hate dialysis but understand how without it I'd have died 3 years ago. Even though I have days when I wish I would have died.  Today is a good day. No pity parties today.  And in reality, the love of my family and for my family keeps me going. Brian is so wonderful.  I'm enjoying my dad.  And the love for my daughter is incredible. This keeps me happy.  

So on that note, gave a wonderful day. I'm on the machine now, but the sun is bright and the temps will get in the 70s today. I'm heading outside when this us over and just bask in the warmth!  

The "It's Been 3 Years", edition.

Good Friday morning.  It's been 3 years since I lost my mom. But it's really been longer than that.  She fell out of a chair on Christmas Eve 2013 and never walked again. She really never ate again either.  Just the feeding tube. For the next 13 months she wasted away. She'd have moments of great clarity and moments of wild disconnect. Up until the definitive diagnosis of End Stage Renal Disease (ESRD) aka chronic kidney failure, I was making as many trips to Las Vegas as possible. I'd been reduced to wheelchairs in the airports and the constant use of a cane. I had chronic back pain and debilitating nausea.  And I was tired all of the time. Yeah, those pesky ESRD symptoms. But I was determined to go be with Mommy and try to get her up. At some point I realized that was a futile effort. And she was continually deteriorating.

I ended up in the emergency room in early November 2013. By late 2013 Mom was too weak to talk over the phone.  In early December Dad was informed that she probably had only 6 weeks to live.  I was still using a walker. :-(  And I was getting assorted surgeries and adjusting to dialysis 3 days a week. I let my care team know I needed to get to Las Vegas to visit Mom. They worked very hard to make it happen. I made my reservations. Mom died 2 weeks before I could get out there. 

I miss my mom. 

So the local CBS station, Super Bowl Central, and the local cable company, Cox, had a little spat and Cox kicked the CBS station off the air on Saturday. We're getting more and more concerned each passing day that we'll miss the game. I found out that we'd be able to hook up the XBox to watch it and told Brian. After looking at it, he did he needed to call our tech guy....Shawn. Lol lol. I watched her hook up Netflix with the XBox, but I can't duplicate it. She would have had to show me several times for it to sink in!!  Well as of yesterday around 3:00 PM the CBS station was back on the air.  At the grocery store we were reminded that we could watch it on the Spanish stations. Yes. It was the talk of the town!!

We tried a new chili recipe. Music break. Playing "Sunshine" by Earth Wind and Fire. Ok back to chili. I was watching Guy Fieri making Texas Chili last weekend. Don't hate, please. His recipes are usually too involved and really not the healthiest food. But it looks good, but damn, it's not for a novice cook. And I don't know anyone who has a fabulous outdoor kitchen like he has....but I digress. The recipe was involved, but not too bad. The most difficult part was finding the ingredients. Food Network chefs tend to use obscure items. And Guy didn't disappoint. Anyway we gave it a try.  Or rather I sent the recipe to Brian and he said let's try it. 

Since it is Texas chili, it means there are no tomatoes or beans. It calls for 6 types of chiles and 2 types  of meat because it's "chili con carne".... Chili with meat. It wasn't difficult, just lots of prep. And finding Fresno chiles. Lol. We finally found them. Brian used gloves to deseed and cut the peppers.  And even then, the initial tasting was.....spicy.  The recipe called for 2+ hour cooking time which eased the spiciness. During that time Dad tried to sneak a taste. The spice got him.  Lol. He started hacking and confessed.  Lol.  Busted!!!!  Anyway the recipe also called for a beer  cheese sauce and Brian made that also. The verdict?  Best. Chili. Ever!!!!!

That's it for today. The dialysis run last night was meh.  My BP dropped and my chest hurt. Feeling better today. And off today to go to caucus training this evening (!). Warming up here. The sports books are prepared for the biggest betting day on Sunday. Brian's got a fun walk on Sunday morning. And I think it's tha last day for the World of Concrete convention. Don't laugh. It rivals the Consumer Electronics Convention in scope and size...just not as sexy. World of Concrete!  Loll lol

Have a wonderful weekend. And I do have a slight preference for the Super Bowl, but a case can be made for either team. Have fun!!! 

The "Trying to Get Back to Normal...Whatever That Is", edition.

Good Wednesday morning!  We've got the regular sunrise this morning. The pinks and yellows and oranges streaking across the sky just before the sun crests the ...Sunrise... Mountains. :-)  Sometimes I lament that the condo faces east instead of The Strip to the west but then these sunrises just trumps that thought.  At night I can see the lights all the way to the northwest. I think I can see as far as Nellis Air Force Base.  

Just a few odds and ends and updates. Pauline called Dad on Monday. Well, they actually talk to each other everyday to check up on each other.  Mom and Pauline and another friend, Hertha, did this.  Dad continues with Pauline. Anyway. Dad sticks his head into our room and says Pauline's not feeling well and he's going to take her to the doctor.  Remember, Pauline just celebrated her 96th birthday. You'd never know. And I digress. At some point I thought Dad had left, but no. I was surprised when I finally saw him leave and said something. He chuckled and said that Pauline had to get ready before she went anywhere. She is a class act!  Dad says she was having difficulty breathing.  And when they got to the doctors office, he had Dad take her to emergency. She's still there, but doing much better.  I'd like to go visit her today.  

We were also told that Herbert somehow got robbed of $20,000 in front of the bank, but we have questions. The most pressing question being,"Why are you withdrawing $20,000 cash?".  And surely there are cameras around the bank. We think there is more to the story. These are also cautionary tales about just keeping up with our parents.  And in our case all of our "adopted" parents.  Since Brian and I are referred to as "the kids". :-O   Lol. 

Dad needed to change his medical insurance. He was on Moms, but it's been 3 years (!) since she died and the insurance company was kicking him off. Fortunately I'd navigated Medicare Advantage so I showed him how to that.  On his computer.  He found a plan he liked. I told him to ask his doctors if they accept the plan. And no the doctor didn't. But Dad was on the mark because the then asked the doctor which plans were accepted!  After a studying the different plans, Dad selected the Medicare Advantage plan he wanted, signed up, and selected the option where the payment is deducted from the monthly social security payment. He got the notice that his coverage started yesterday!  Go Dad!!!

Yesterday I made creamy tomato soup from scratch. Well more like "Semi Home with Sandra Lee".  Lol.  But we also put  them bread bowls!  Yes we did.  We found the round bread loaves at "our" bakery. We got stumped by the small ones and not so small. We opted for the not so small. I think that was the right size. Found a video on YouTube on how to prep the bread for soup and voila!  Success!!  I need to figure out how to make the tomato soup taste more tomato-y. But next time I'm making cream of mushroom soup. Oh. And the prepping of the bread bowls kept the soup hot. Lol. It stayed hot until we finished!!!  

No news on the  dialysis front, except, I'm getting stronger. I've been out of sorts for at least six months. And it's all due to straddling that fine line for my dry weight. My nurse called me her "special" child. Lol. Apparently I have a 1 kg window. To much under and I've got low  blood pressure and feel like I'm going to pass out. Too much over  and I'm retaining fluid and toxins and can barely move, have trouble breathing and have constant nausea. But we've seem to have it right now.  I've been feeling better and am ready to start doing stuff again. I'm ready for swimming again and am ready to start walking again. Something close to my normal. :-)  

Well that's it for today. We've got a chili recipe which calls for...chiles. We are on the hunt for Fresno chiles. That's what we get for watching The Food Network. Eh. Snow still in the mountains.  Still snowing in the mountains. And last night the temperature was 10.  Lol. 10 degrees.  Rofl. Never again!!!  Anyway. Enjoy your day!!!!

Tomato soup in bread bowl. 

The "Tales From Other Side", edition.

Good Monday morning!  It was warm here on Saturday. 70 degrees warm. Today I'm looking at the mountains east of me and they are snow capped. Here's the thing. These are the lowest of the mountains that rim the valley. We're used to seeing snow to the west and to the north.  But the east?  Dad, who's been out here over 25 years, says he's never seen snow on that mountain.  And the clouds are hiding the top of this mountain. This mountain is the one we crest flying in from the east, meaning the planes won't come out if the clouds until they are literally minutes from landing!!!  Andthe  snow tally in the west mountains, Mt Charleston, is 10 inches and counting. Lots of skiing and snowboarding. And I'll pass. Thank you!  

A few tales from the other side at the request of a friend.   The other side of what?  Incenter treatment. Most of the people I met were pleasant. I got welcomed warmly by many patients when I first started treatment, well when I transferred to first shift. The the third shift folks weren't so friendly. And considering my state of mind, I really didn't care.  I was more lucid by the time I switched shifts a few months later. I also got the chance to meet and talk and with people on the rare occasion I had to wait to be picked up. And then again, there were others I just avoided. 

You get rather close to most of your fellow warriors because we're all experiencing the same thing and we're together 3 days a week for 4-5 hours.  One of my favorite moments was when I walked in one morning. I was one of the last people to come in on first shift. People were already hooked up having their treatment. So I walk in and pass a bunch of people and we greet each other...like walking into Cheers.  I ask one guy how was his weekend and he tells me he had diarrhea over the weekend.  With a smile.   :-/    Um. I'm delighted that you feel that comfortable with me to tell me that, but it really was TMI.  The staff that heard rolled their eyes. Lol. All I could do was to ask if he was doing better today. He was. 

You get concerned when patients disappear for a while. At best it means a hospital visit. Well, one of the older ladies that took me under her wing was missing for a while. I later found out she had a heart attack. After she did some drugs. Alrighty then. I found out that drugs were shared among the patients. And I'm not talking about our prescription drugs. :-/  again.  It wasn't unusual for patients to come in obviously under the influence. And they weren't shy about letting folks know they used.  Some people weren't seated next to each other because of the "transactions". And sadly at least 2 of the people died before I left Detroit. 

There was my partner, my chair neighbor,  that would curse out a tech at any minor issue. But he taught me a lot. There was the lady somewhere that screamed every time the needles were inserted. There was the sweetest tech, who could never place the gauze over the hole where the needle was removed, so I bled like a slaughtered pig every time. I hated to see her come to take me off the machine. :-(  There was the time the guy got bedbugs and seeing how it was handled. There was the time a staff member hid under a counter because she had a stalker patient. Or the time someone stole all of the tv remote controls.  :-/   That being said, this was my standard for a center and it really wasn't all that bad. Especially when I compare it with Las Vegas. It wasn't bad at all. 

When I arrived in Vegas, I immediately requested home hemodialysis training. I had to wait 5 months. I didn't have the characters in Vegas that I had in Detroit. Or not as many.  Lots of people who spoke only Spanish. The old lady from the nursing home who yelled for almost the entirety of treatment. Her nursing home would "forget" to give her the sedative so all 40 of us were subjected to her yelling at the top of her lungs. That started a patient revolt. Lol. Finally the staff turnover in Las Vegas was freaking incredible. I'm there 5 months and we lost the only dietician, 1 of 2 social workers, 2 RNs, and 4 techs!  Well damn. They also lost me!  Yay!!  Lol. 

Well that's it for today. All dialysis all the time. There are many things I saw and heard that I am uncomfortable about writing about. We experience a lot of indignities because of ESRD....like the time I pooped on myself when I passed out. :-(  I was embarrassed to say this, but it happened. Part of the disease. Eh.  Welcome to chronic illness. 

On a lighter note.  I'll be attempting creamy tomato soup in a bread bowl today.  And we registered for the caucus process.  I'll write more on that later.  We're gonna stay warm today.  Have a wonderful day!!!

Sunrise Mountains. Snow capped this morning!