The "Enjoying Family", edition.

Good Friday morning!  We are simultaneously staying busy and doing nothing!  We're just chilling and planning. I always take Shawn on a shopping spree for Christmas and Brian wanted in on the action. Lol. So on Wednesday we headed to the Fashion Show mall on the strip. Why that mall?  It has the largest Macy's in town and that Macy's sells lines that are not in other Macy's stores in the area.  Now I have to add that yes, it's the largest Macy's in the area, but it's small compared to Oakland mall.

While Shawn  and I are shopping, Brian heads out into the mall to use his Art of Shaving gift card and will meet up with us in Dillards. His shop of choice. Surprisingly this was the very first time I'd walked the entirety of the mall. Because of course Macy's was at one end and Dillards was at the complete opposite end. Glad I've been going to the trainer.  Lol. It's a huge mall!!  Huuuuge! I already mentioned it has several anchor stores..Macy's, Saks, Dillards, Nordstrom, Neiman-Marcus and for some odd reason Forever 21 (what??!!). 

After spending quality time in the mall and me drooling over purses and just not willing to pay $300 for a purse (took all my willpower) we headed to Los Tacos for lunch. Well it was about 2:30 but we were hungry. Sooo good as always. They got me liking their green sauce. I got carne asada, the kid got the al pastor and Brian got carnitas. I got the strawberry Fresca, Brian and Shawn got the pineapple. Fresh fruit drinks. While eating we made plans to to go to the light show thingy at the race track. 

Light show thingy is really called Glittering Lights at the Las Vegas Speedway. I'd seen segments about it on tv during the holidays since we've been out here. The first year we had no idea where the speedway was. The following year I just didn't make time because I had treatment in the evenings. This year I was determined to make time. Wednesday and Saturdays are my off days. And of course I can adjust my treatments. So off we went. The speedway is on Las Vegas Blvd across the road from Nellis Air Force base. In other words, we drove north on Las Vegas Blvd until there were no more street lights (!!). There was one of the portable lighted signs telling us to "turn here for light show" down a really dark road. Lol. We could see the lights "over there", but we had to "turn here". And the dark road was a classic Las Vegas road that went from 2 lanes to four lanes and back to 2 without notice. ;-/  in the dark. 

After twisting and turning we made it to the entrance of the speedway. It cost $20 per car...during the week. Price goes up on the weekend. The light show is a charity event. We pay then head to the next stop and are greeted with people from Goodwill and finally Boy Scouts who want to sell us hot chocolate, water and popcorn. Have you ever tried Boy Scout popcorn?  You should!  Anyway. The place is lit up even before we enter the main event. We are instructed to turn off our headlights and head on in. We enter what will the first of several light canopies. So many displays!  We went through a safari, Las Vegas, space, Christmas wonderland and a Hanukkah display and more. Oh yeah, a radio station, 105.5 played Holiday music as we drove through. We drove through the grand stand. I don't think we were ever on the racetrack. Which makes sense. 

I mentioned it was a charity event. Each light display was sponsored by a Las Vegas business..car dealerships, casinos, restaurants, hospitals, tv stations, radio stations, stores, law firms...etc. more sponsors that I can name. We did get a multi page pamphlet which lists all the sponsors. 

As an extra bonus, the speedway sits higher in the valley so we could see the Las Vegas valley, downtown and the strip, all lit up, from the speedway. It was like a reverse view from when we had lunch at the top of the Stratosphere!  The three of us enjoyed the light show and declared it was worth the trip to the edge of Las Vegas. Lol. It was a beautiful end to a beautiful day. 

And oh yeah. Dad says he got a call from my cousin in Ohio. He's on his way to San Diego..that snowbird thing. And is stopping in Las Vegas for a few days. That was yesterday. Soooo.....that's another story for another day!  

On the dialysis front, all,is well. I'm keeping on schedule.  Shawn is in the room with me and Brian during treatment. I'm loving having my family with me!  

That's it for today!  And that's it for the year!  Enjoy the weekend. And stay safe!  See ya' next year! 

<3   

Some photos of the Glittering lights. 

The "We're Still Celebrating!", edition.

Good Wednesday morning!  I like Wednesday. It's usually my day off from treatment. I didn't do treatment on Sunday. But it's not my day off. I'm off on Saturday. But who wants to do dialysis on Christmas Day when you don't have to. And I didn't. Ha!

I left off with Shawn arriving. She arrived early. She'd had a long day. She and her friend left New York City to go to Washington, D.C. And went to the museum. Stayed until it closed. Her friend went back to Newport and Shawn stayed with a friend in DC. The had a 5:30 AM flight to Vegas. By the time she arrived, she was tired. We brought her home and she slept...until dinner. I made her her favorite dinner.  Of course I did. That's what moms do!  At least that's what my mom did!  Once when we arrived in Vegas she fixed us some steaks on her new George Foreman grill!  Lol. 

Thursday we went with Brian to get a haircut..well we dropped him off. Drove down the street to th donut bar and Shawn got a gingerbread donut. And yes, the donuts are still as large as your head. Did some shopping then back to pick up Brian. Friday was finish the grocery shopping. Saturday started cooking. Made the candied sweet potatoes and the greens. OMG, the greens were delicious. And heating up the next day they were even better! You know the recipe except now I add 2 diced chipotles and a teaspoon of adobo. It starts out really spicy but the cooking decreases the spice factor. 

Sunday we finished the meal Brian cooked a ribeye roast to perfection. I made the old school macaroni and cheese and my fancy rice. And I made gravy from the pan dripping of the roast. Next time I'll use less pan drippings. I ended up with almost a quart of gravy..  :-/  But then again I made a lot of rice!  Oh yeah, while we were cooking we were also watching Deadpool. Yes. This movie has catapulted to one of my favorites. 

Monday we went to see Rogue One. The options for the movie was mind boggling. 3D, Real 3D, standard, 3DXD, XD, IMAX. Head spinning. Different options at different theaters. I have no idea what any of that means. We ended up at Real 3D. Yes we enjoyed it. Didn't realize it was a one and done. Or as Brian recalled the line, "We got the plans at great cost". And let's add to this little nugget to raise the hairs on my back. Deadpool loved George Michael and Wham!  And Carrie Fisher was at the end of Rogue One. The reference to both stars at this time was jarring to me. 

Yesterday dad treated Shawn and me to a belated lunch at the Top of the World restaurant on top of the Stratosphere. I think it's the tallest structure in Las Vegas. It's a revolving restaurant. We stopped off the elevator into the restaurant and the view was breath taking! We had seats near the window. Hardly any conversation for looking out the window. We could see the entirety of thr Las Vegas valley. We were also treated to people bungee jumping from the top of the Stratosphere!  Yikes!  Lol. And oh yeah, the food wasn't bad. It wasn't great, but let's be honest. You come for the view, not the food. Lol. 

Oh yeah, I forgot to mention that Shawn joined us at the trainers yesterday. Our trainer, Gaylynn,  talked with Shawn a few days earlier so she could plant workout for her. Our kid wok red out like a champ. And Gaylynn showed no mercy!  And yes, Shawn made me and Brian look...older than her. Lol lol. A good time was had by all. And I yes, the tired bat hit me hard as we were leaving the Stratosphere. I slept during treatment!  

Today we're getting the manicures and pedicures and Shawn gets the rest of her Christmas present, the annual shopping spree.  I'll probably crash and burn again today. But that's ok. Looking forward to more adventures. That's it for today!  Enjoy your day!  

The Stratosphere. The restaurant is somewhere up there! 

Bungee jumping from the top of the tower. No thanks. 

I don't know what this ride is called but I'll pass. And yes, my kid did this ride. 

The "My Holiday Season", edition.

Good Monday morning!  So yeah. My holiday season usually starts in November. Mom's birthday is on Veterans Day. Then we have Thanksgiving Day. Then Shawn's birthday, my birthday, my parents anniversary is December 24. Then Christmas Day followed by New Year's Eve and New Year's Day. Whew!  It's one big celebration!  Now that being said, I didn't have the holiday spirit I usually have. I wasn't sad or melancholy, it  just seemed I was too busy doing stuff.   

We've already gone over events in November and Shawn's birthday and my birthday. But! I had a pre birthday gift. A few days before my birthday, my best friend from high school, Sherri, came to town with her two (adult) children!  We hadn't seen each other in decades. And it was an absolute joy to see her!  They were in Las Vegas for the first time, for a very short, too short a time. They flew in on Thursday...and the flight was delayed..ugh..and left Saturday morning. 

We met up Friday morning. Brian and I thought it was chilly, but Sherri and her family explained to us they had just left 17 degrees. Brian and I stood corrected!  Anyway. They were staying downtown. Which I think is a great intro to Vegas. And my favorite part.  We gave them the grand tour. I must add that day, we had extremely high winds. It was so windy that the sand and dust kicked up from those vacant desert fields and made visibility almost impossible. The wind speed was so high that the freeway was closed where there was bridge construction for fear that loose equipment would fall on cars below. Which caused a most impressive Las Vegas traffic jam. 

The good news is that the traffic jam didn't deter us. We just needed to take a detour. So Sherri and her family got a really grand tour of Las Vegas and parts of Henderson!  Parts of Las Vegas that most visitors don't see. They also got a chance to see Wayne Newton's compound and the UNLV campus.  Lol. Yes. Our detour was that deep. We finally made it back downtown and had lunch at Zydecos. Eventually our visit came to end. And they needed to explore more of downtown. Did I mention her children are great?  They hover over their mom like little helicopters and are as sweet as they can be. They will return. Stay longer.  And the son, who made the reservations was eying a strip hotel for the next visit!  I enjoyed the visit and look forward to seeing them again! 

My kid arrived on the 21st. She traveled to New York to visit a friend and then they traveled from New York to Washington DC to visit the Museum of African American History!  Shawn says she wants to go back and we should go also. Then! She left from DC for Vegas. I made the reservation. And belatedly I wondered why I scheduled her flight to leave DC at 5:30 AM and stopover in Charlotte before eventually getting to Las Vegas. Especially when she was sending me texts about her status....3 hour time difference. Lol. Getting texts starting at 2:30 AM my time until she landed at McCarran. :-/  I'm thinking I got the least expensive flight.  Lol. Anyway. She arrived at 9:30 AM Vegas time. And as far I was concerned, this was my Christmas present!  My baby is here!!!!!

On the dialysis front, I altered my schedule so I would not have to do treatment on Christmas Day.  The bonus was having Shawn in the room with us while I was doing treatment. Sometimes we don't have to talk...just being together is wonderful!!  

That's it for today. You know there's more to come!  Have a great day. We're going to the movies today and chilling. We've got a full week ahead!  Take care and enjoy the day!  

Me and Sherri In front of the giant Christmas tree in downtown Las Vegas on Fremont Street. 

The "Starting a New Decade", edition.

Good Sunday morning. The month of celebrations continue!  Yesterday was my 60th birthday!  How about that?  The irony is the funeral of my Aunt Jeanette was on my 60th birthday. Rosie kept me apprised of the details. She also wanted my brother to read my blog entry about Aunt Jeanette at the funeral. My brother agreed to read it. <3. The kidney disease prevented me from attending the funeral. It was in Yellow Springs, Ohio. Sponteniety is not possible. I would not have been able to get the supplies shipped.  I need way to much lead time.  And I don't even know if the travel case would have been available. Even getting to incenter treatment would have been questionable. I'd have been at the mercy of the local dialysis center....like the only time available would have been the same time as the funeral. Ugh. Anyway. I was there in spirit and my cousins have posted photos of cousins afterwards and a few videos were also posted. 

So on with my day. We started with our regular weekly one hour trip to the casino. No, the casino ignored my birthday. Harrumph! Anyway. Brian made reservations for lunch at Benihana. I hadn't been to a teppanyaki restaurant in over 35 years (!). That dates me!!  Lol. Last time was Kyoto near Fairlane in Dearborn.  Hah. Took you back also!  There are 2 Benihanas is Las Vegas and only one was open for lunch. This one was at the Fashion Show Mall on the strip. Reservations were for 1:00.  We left the condo around 12:30. 

The mall is huge. I remembered when it first opened. it was a high end mall. Gucci, Louis Vuitton, Prada. Brian and I walked into the Louis Vuitton store. None of the items had price tags. We got the hint!  But such nice luggage and purses!!!  Anyway, it's now more consumer friendly. But some high end stores are still there. Anchor stores are Macy's, Dillards, Saks, Nordstrom and Neiman Marcus. Enough said. Anyway we get there, intending to get valet parking at Macy's and walk on over to the restaurant. Valet was full. Before 1:00. Oh yeah. Christmas season. We drive around to the other side. Nordstrom valet was full. Kept going to the underground parking lot (massive parking lot). Traffic. Jam in the parking lot!  Lol. And we discover valet parking in the underground parking lot. We turn right into it. And oh yeah. They sent the parking info to Brian's phone. Lol. What happens if you don't have a smart phone??

Find our way to the mall entrance. Now we just have to find the way to Benihana. We had to go outside the mall..the entrance was outside.  We enter, Brian says we have a 1:00 reservation, they ask whose birthday is it!  We get seated immediately at a table for 8. We are the last people seated. The other 6 are a family celebrating the mom getting her Masters degree from UNLV. The waitress and service was great. But the best was yet to come. 

Brian and I opted out of appetizers.  Which ended up being a good thing. I got strawberry lemonade and Brian tried an apple sake. Tasty!  Some of the other people got edamame. I actually asked the lady if I could taste one. And she nicely let me. And it was good!  Yes that was my first time. The waitress lets us know that one of the kids has a shellfish allergy and another is vegan and would we mind if their food was prepared first. Of course not!  

After we were served the soup (yum) and the salad with ginger dressing (yum), the chef comes out. Now 35 years ago, the chefs were all Japanese. This time  our chef was a young African American woman!  Chock full of personality and a master of the knives. She put on a show and cooked everything for everybody!  Brian and I had the beef julienne and shrimp.  And the sauces...yum.  Then we all got these massive servings of colossal shrimp.  And then!  The Masters mom and I got ice cream because we were celebrating. And I was full. And the food was good. And Benihana is an experience. We won't be waiting 35 years to visit again! 

We'd planned to walk around the mall afterwards, but we walked straight to the valet area and headed home. Lol. We thought we'd be going out later, but we didn't. We woke up just after 6 that morning. And we just chilled after lunch. So yeah, the reservation was 1:00 but the meal lasts 2 hours or more. We didn't get out until after 3:00. And the traffic in the underground parking lot was still busy. Whoever heard of bumper to bumper traffic in an underground parking lot!  Vegas, baby!! Lol lol. 

No dialysis news. Saturday is my off day. I dialyzed Friday night after spending time with Sherri and her kids, my best friend from high school who was in town. And that's a story for another day. But let's just say we hadn't seen each other in a very long time. And we never missed a beat!  But it sure did make a great birthday present, seeing her!  

That's it for today. And yes it is cold here. Was 30 degrees when I woke up this morning!  And yes it was 70 on Friday. Lol. And yes, it's going to warm back up next week. But even when it's 50 degrees people out here think they are in the frozen tundra. And yes Sherri and her kids laughed at me and Brian when we complained about the "cold". Lol. Enjoy your day. And stay warm!  I do remember what 17 degrees and snow feels like! 

A least Brian looked into the camera. Us at Benihana. 

Our chef at work! 

The " My Random Thoughts About Dialysis", edition.

Good Thursday morning. Yes, I am doing treatment right now. I am in my outrageously comfortable rocker recliner in my bedroom watching the 32 inch flat screen. Brian is on the other side of the bed folding clothes. I went from my bed to my chair to start treatment.  Well, not literally. Brian had to prep the machine and I had to clean clean clean clean.....my arm...the accesses for the needles. Then I needed to weigh myself pre-treatment, take my temperature ( make sure I don't have a fever..that means infection and that's really bad) take my blood pressure sitting, then standing. And record all of this. 

I also record if I've had a medical procedure, if there is an issue with my access and if I've experienced digestive issues. I also have to check my fistula...I place some fingers on my forearm and feel for the buzz.  And the buzz is a good thing. It's my lifeline. If it's not buzzing then my access doesn't work and I'd need an immediate procedure...to either open it up, or to insert a catheter on my chest (boo).  We also enter the lot number of the cartridge and the serial numbers of my machines.  Yep. We do this every.single.time. And even when we travel. 

I normally dialyze in the evening, but a friend is coming to town so I want to get it out of the way.  And doing home hemo gives me this flexibility. Did I mention that I hate dialysis and wouldn't wish this on anyone?  Eh. But sometimes no matter what you do, your kidneys still may not cooperate. My sister in laws kidneys have been fighting her for a while. But she's doing the right things. The blog has helped. Hopefully she and nephrologist can keep her off of dialysis. 

We started prepping at 7:30 this morning. Brian started the treatment at 8:05. Oh yeah. I inserted the needles, then he administers an anticoagulant through the venous (blood in) line, the he administers Epogen...that's for anemia. Because the kidneys don't work, so making good blood doesn't happen. And then I'm hooked up to the machine. Take the blood pressure and we're off. The machine clanks  every 30 minutes or so for a blood pressure reading. Anyway. So at 10:45 (it's 10:50 now) the machine alarm let us know that the requested amount of fluid has been removed. But I still have 45 minutes left.  

But wait!  You say I thought you were done. The amount of fluid is gone. Well yes it is. But we still need to remove toxins. You know kidneys remove toxins. Pat's kidneys don't work.  Ah ha!  The machine will wind down around 11:30. Then we have rinse back the remaining blood in the cartridge that was there when treatment ended. Yes, I want my blood back!!  After I'm no longer hooked to the machine, but I still have needles in my arm, Brian flushes the needles ( which have tubing) with saline. He removes the needles.  I apply pressure to the accesses for about 8 minutes. He then applies triple (?) power antibacterial to the accesses and bandages them. AND THEN we take the final stats. Blood pressure, temperature, Brian checks for the budding in my arm and then the end of treatment questions. Digestive problems? Bruising? Infiltration?( that's where the needle slips out of the vein and the blood goes into the tissue...that hurts...a lot). 

And that's it. Should be all done around noon. And yes Brian has to clean the dialysis machine. So. To put this in perspective. Time wise, it's like a one way trip from Detroit to Las Vegas. Five days a week. So I can stay alive. So.  Yeah. I really like this better than the 3 days a week incenter. It's much better on my heart and body in general.  And I'm not wasted for the rest of the day.  But I am looking forward to nocturnal treatment. Doing treatment at home in my own bed at night. And!  Because I'll be doing treatment even longer at night, treatment goes down to 4 nights a week!  Training starts next month..so more on that later. 

Well that's it for today. The entire blog was dialysis, so there is no "on the dialysis front". Lol. My friends in the Mideast and east coast stay warm. I told Shawn it's getting cold here. She sneered at me! :-(

Lol. 

My comfy chair. And yes Brian uses it also. And my dialysis set up. 

While I wait for a kidney to love, I've got the artificial one above. :-)

The "Aunt Jeanette", edition.

It's Sunday morning. Friday evening we received a call that my Aunt Jeanette had died. Let me tell you about my Aunt Jeanette. She is actually my dad's first cousin, but any adult cousin in my family was referred to as an aunt or uncle. She lived in Yellow Springs, Ohio, my dad's hometown. Heh. Yellow Springs is ground zero for the Perry family. When I was a kid we made many trips there to visit my grandmother...and relatives...and my godparents who lived up the road in Wilberforce, Ohio. 

As soon as we arrived in Yellow Springs, I'd make a beeline to Aunt Jeanette's house. Now I've got to let you know that I had a cartload of relatives there, but it was Aunt Jeanette's house where I was headed.  It was maybe 1/2 mile - mile away. I'd get to the house and walk right on in. She had 5 kids 4 daughters and a son, but I was always welcome. As a matter of fact she started referring to me as her 5th daughter. 

As a young adult I was diagnosed with an inherited genetic disease, acute intermittent porphyria (AIP). Not to long after my diagnoses, Aunt Jeanette was also diagnosed with AIP. Fast forward to 2012. We both were diagnosed with end stage renal disease (ESRD) also known as full on kidney failure. Our diagnoses were weeks apart. Yep. I am the 5th daughter. I had hoped to visit her in Yellow Springs before we moved to Las Vegas, but we weren't able to fit it in. However, I was being kept up to date on her by her daughters and granddaughters. Make no mistake. She was loved very much!!  

So last year, I get a call from one of her daughters. Rosie planned to bring Aunt Jeanette and Uncle George to Las Vegas and she wanted to know a good dialysis center.  And she was researching the centers.  It had to a good one...because some are much better than others.  And she found one that met her standards to care of for Aunt Jeannete.  So let me tell you what it took to get my aunt and uncle out here. And it's all about love. 

My aunt and uncle are both in a nursing home.  And Aunt Jeanette not only did dialysis 3 times a week, she was using oxygen and they both use wheel chairs.  Rosie and her husband flew from Texas(?) to Columbus, Ohio and drove about an hour or so to Yellow Springs to get my aunt and uncle. Drove back to Columbus, took a flight to Las Vegas...and remember both my aunt and uncle are in wheelchairs. And two other of her daughters met them out here. One flew in from Arizona and the other flew in from Atlanta. And one day Aunt Jeanette's sister came from California to visit!  And yes Dad, Brian and I spent a lot of time with them while they were here. 

So imagine my surprise when my Facebook memory for today were photos of the visit. <3. I'm glad Shawn  got to see Aunt Jeanette when she went to the family reunion in September. And I'm so glad I spent time with her and her family last year this time. Aunt Jeanette was indeed one of my moms. When I was with her I felt unconditional love. She was a wonderful person. (And she introduced me to lemon merangue pie!) She will be missed. 

That's it for today. When we went to San Diego, Dad and Uncle Buster were talking about how their children are taking care of them. And yes, Uncle Buster's kids were absolutely doting on him. And the children of Aunt Jeanette and Uncle George dote on them. Aunt Dorothy (96 years old) has her own apartment in her son's house. And of course we're out here with Dad...keeping him out of trouble. We grew up honoring and loving our parents and aunts and uncles. And we knew we were loved. I'm going to miss my Aunt Jeanette.  I've lost another mom. <3. Give your older relatives a call today. They'll love hearing from you and you'll enjoy talking with them. :-). 

Uncle George, Rosie and Aunt Jeanette

Standing, me, 2 of Aunt Jeanette daughters, Dad and Rosie's husband. 

Aunt Jeanette, courtesy of one of her granddaughters. 

The "Random Thoughts and Reflections", edition.

Good Thursday morning. Got the music going this morning. The one thing and the only thing I miss about doing dialysis at the dialysis center. 3 1/2 hours of nonstop music with my Bose headphones. And chair dancing. What's playing now?  I selected "GrapeVyne" by Brownstone. The music shuffle will start after this. I love the song, the voices, the arrangement. It's a song that I've listened to a lot. No shame!  

So random thoughts and reflections.  First of all I'm watching my iPad die a slow death. It locks up.  My keystrokes take a while to show up. It'll do random restarts. I'm feeling cheap but I'll get a replacement soon. Probably a Christmas gift to myself. A little self love!  But even as I type this blog, the keystrokes are lagging behind my typing. Ugh. Oh back to music. A few years ago when I got my replacement phone,  it came with a Harmon Kardon Bluetooth speaker. Yeah, I had to wait for Shawn to get to town to show me how to hook it up. I can't believe how good the sound is from this one speaker. Remember back in the day when we had two speakers that were 3 feet high?  I can blow out the apartment with the little round speaker. And then Dad went and got himself a Bose radio. He can blow out the apartment with that also. Did I mention that Dad likes The Gap Band?  Lol. He continually surprises and amuses me!  

Ah iPad shuffled to the Stylistics, "Stop Look and Listen". One of my favorite groups. Although it's really Russell Thompkins. He is The Stylistics. I love a great falsetto.  And you know I love Ron Banks of the Dramatics. However Russell tops Ron...but he's the only one.  Love me some Ron Banks.  

We go to a personal trainer once a week. It's a actually a pretty cool place.  Our trainer is sweet and a hard taskmaster. I call her mean and evil.and she just smiles. And I'm getting stronger. Lol.  Yes I researched trainers. I liked the reviews I'd read about this place, Tony Cress. One day Brian and stopped by. Tony was there. Very nice guy. I explained my challenges. He said he just the trainer for me. Called her right then and there and she was at the gym within 5 minutes!  Once I started training, Brian would wait while I worked out. Gaylynn (our trainer) said she'd train the both of us for the same cost!!!!!  The next week Brian was getting his training on. Of course Brian and I do totally different workouts. And Gaylynn is working with both of us. And at the same time Tony may be training someone or one of the other 2 trainers may be working with a client. The atmosphere is welcoming and fun, even though the trainers are working our butts off. But the workouts are paying off.  And we all are working our butts off. Weights, kettle bells, suspension training, bikes, jump ropes, ropes, and other equipment I dont know what to call. And movement exercises. 

Lol. "Back in Love Again", LTD is playing and Dad danced his way into the room.  Anyway. Deep Water fitness is not too bad either. Of course three times a week as I get into the (cold water) pool at 9:00 AM I ask myself why am I here?  Jill Scott featuring Eve, "Shame". Anyway. The cold goes away pretty quickly. The instructor, Patti, has us moving nonstop for an hour. We bitch at her also.  Lol the entire class is complaining. As a matter of fact, we get there before the 8:00 class is over and they are complaining!  Lol. We work arms, legs, core and balance. I'm not particularly happy with the arm work. It hurts, but that's making me stronger. Yeah. It really is. Or putting the buoys on our feet and moving forward or backwards.  That'll put your balance to the test. My favorite was when she had us put a noodle under each foot and the move across the width of the (Olympic size) pool. Guess who was the only one who was able to go across and back with no problems?  That would be me!!  But the cannon ball, on my back moving with my legs up and feet out of the water is pure torture. How can almost everyone do this move with ease and it's damn near impossible for me! Lol. I just keep on trying!!

"Ready or,Not", The Delphonics. I bet you like The Delphonics even better now than when they were recording. Ok. On the dialysis front. Tuesday I had a low blood pressure episode. That hadn't  happened in a while. I feel asleep during treatment. I woke up feeling odd. I knew what that odd feeling was. I call it the "life slipping away from me" feeling. What it is, is too much fluid has been taken and my body is bitching. I feel light headed, I get hot.  This time we'll add nausea to the list. And I get extremely restless. I let Brian know I need saline. Yeah, a saline pack is hanging on a pole on the machine. And with all the tubing, all Brian has to do open a clamp which direct the saline right into my veins.  Yes. You know I have two needles in my arm during treatment..a venous (incoming connection) and the arterial (outgoing connection).  During treatment blood goes out into the machine, gets cleaned and then is returned to me. When saline is administered, the saline is a direct path through the venous line. I need to add that Brian handles this like a pro. I asked him if it scars him when I crash. He said yes. I told him it scars me also. He says we are a team and when I let him know I need the saline, he never hesitates. <3

Anyway. After 5 liters of saline I felt better. For the record that is a lot. And about 10 minutes later I needed more. I got 3 more liters before I felt sort of better. At this point we decided I just needed to stop treatment. Anymore saline and I would have negated the treatment. The whole point is to not only remove the toxins in the blood but to remove fluid. And here we are adding fluid. <face palm>. In spite of this, the treatments had been incredibly routine.  Which is how it's supposed to be. We'll recover and continue. 

That's it for today.  It's chilly here, but after seeing what my friends in Denver have to deal with, I'm ok. The sun is shining, the sky is so clear that we can see the mountains behind the mountains!  Signing off with The Dramatics, "Ocean of Thoughts and Dreams". Play this song and just let Ron Banks take you away.. Along with the superb harmonies of the Dramtics. <3. 

See that pole in back of "kidney"?  That's where the saline bag goes. And see those shelves of supplies?  That's just the tip of the iceberg. There's a whole lot you don't see.  :-\

My trainer. 

The "End of the Thanksgiving Weekend", edition.

Good Thursday morning. We left San Diego Saturday morning. My cousin wanted us over for breakfast but it was going to rain and I wanted to make sure we were out of the mountains before that happened. We'd been in the Pennsylvania mountains during the rain. It wasn't pretty. In fact at one point we went from the rain to the being in the clouds to being over the clouds. Ugh. 

We used the GPS is the car. The odd thing was it gave us a different route out of San Diego than the route to San Diego. Silly car. Lol. But we did pass an Air Force base and went through downtown Riverside. And the bonus was the traffic was light. It could be that was because we left town around 7:30 AM. Also the climb up the mountain was much more tolerable than the twisty turny descent.   We stopped in Barstow for breakfast.  I drove to Primm to give Brian a break.  Brian and Dad bought some lottery tickets. So, you know, we could win and buy a place in La Jolla. Primm has an outlet mall that was crowded (I guess Black Friday extended into Saturday)  and the traffic back to California was impressive. It's not often you see bumper to bumper traffic in the middle of the desert...for miles and miles and miles.......and miles....and then some more miles.....Lol. We made it home. Brian shopped for the fresh items that we needed to cook for our Thanksgiving dinner on Sunday. 

Woke up Sunday. Put on the sweet potatoes and then started treatment. We decided to get it out of the way so we wouldn't have to do it late in the evening after dinner, while we were tired. I finished treatment just before noon. We now had 4 hours to get the dinner done. The menu was Honeybaked ham and smoked turkey breast. Sausage dressing, green beans with chipotles and adobo (yes yum), candied sweet potatoes., cranberry sauce, gravy and corn if cooked and frozen.  And a couple of pies. And yes, we had 1 guest. And yes, dinner was served at 4. No problem.  After treatment I peeled and prepared the sweet potatoes and cooked them.  Dad snapped the green beans when he came back from church so after I finished the sweet potatoes I cooked the green beans. Brian had done his sous chef thing and had diced the onions, garlic, celery and green pepper for the green beans and dressing. Oh and we some rolls. Tasty meal! 

On the dialysis front, the infusions of iron makes my porphyria react in a bad way. My skin is extremely fragile and tears easily and blisters.   It's always something. Bleah. Currently I get iron infusions every other month. My body can't produce enough iron because I have no kidneys. The doctor is considering iron pills.  We'll see. So anyway if you see me with bandages you know that I have a skin tear. And I'm using the bandages and using antibiotics because I'm susceptible to infection.   Yeah it's always something. But my husband makes me keep on going. And that's not a bad thing!  

That's it for today. I understand it's warmer  in Michigan...for now. than it is out here. But we have no clouds. And the sun makes it feel not as cold. I'm still good out here! Today is December 1st. Let the holiday season begin!! Have a wonderful day!  

Coming down the mountain. That's Primm in the distance. And the Nevada state line. 

A pantry staple! 

The "I Could Live Near a Beach", edition.

Good Tuesday morning!  Thanksgiving is over and there are just a few days before December. We'll start the Christmas thing then. So yeah. We went to San Diego. We stayed at a Doubletree Hotel very near my cousin's house. Her youngest son answered the door. I hadn't see him in a while and I had 50/50 chance of getting the right name. I failed. Lol. The oldest son is Shawn's age. This was the youngest one..but when they're young adults all bets are off. As a side note the young man remembered us, but really remembered Shawn. Here's the story. Years ago we were in Yellow Springs at the house of another cousin. Shawn was about 7 years old. The cousins have a swimming pool. We didn't bring Shawn's swimming suit, but she was wearing shorts so we let her go in.  Her young cousins were already in. Shawn has been taking swimming lessons since she was 2 so we were fine with her swimming. And also there were a ton of adults watching them. Well at one point the youngest cousin who was a novice swimmer got into trouble near the deep end of the pool. Shawn pulled him to safety. So now the family story is Shawn saved him. 

My cousin had us over for breakfast the next day. We mentioned that we were going to find the ocean since we were so close. Yes I've seen the ocean. Yes I've been on the ocean. But I am a water baby.  You know that..remember me saying "learn to swim?"  Anyway.  My cousin offered to take us to a beach. Our destination was La Jolla (pronounces La Hoya). Dad was impressed by the highway system. Lol. Anyway. We get to the beach. Houses and apartments were literally right across the street from the beach and ocean.  I want to live there!  The beach was beautiful. People were kayaking and people were surfing. It's November!  The beach was busy!  I fell in love!  We drove around the coastline for a while. Then my cousin pointed out a cross on top of a mountain. It was a veterans memorial. She drove us there. 

The roads were turning and twisting and she navigated it like a pro. But I tell ya..it made me miss the relative flatness of Las Vegas!  Lol. The view from the top was awe inspiring. I sat on a bench near the edge. It was easy to get vertigo up there. I admit. If I could afford it, I'd move to La Jolla  in a second. However I get that these houses are so far out of reach. So yeah, we bought some lottery tickets before we left California.  :-D  One can hope!  

On the dialysis front, we took my kidney with us. This was the first road trip with the portable kidney. It required a different, but smaller and lighter travel case. However we had to take the supplies we usually have shipped. The company ships for 3 days or more. But this is the reason we got an SUV. We learned that we might need a larger SUV. Lol. But in our defense we hadn't planned on traveling with Dad. It worked out though.  And we had less boxes on the way back home. We learned that we need to maintain a travel set of supplies. We forgot the blood pressure cuff and the face masks and the flow sheet. I purchased another cuff, so now we have the travel cuff. We winged it without the masks since neither one of us were sick. And Brian printed a flow sheet from the Internet in the business center of the hotel. Treatment was uneventful. Yay!! But the set up and getting supples had us starting later than we'd like. We had to pass on the dinner invitation with my cousins. It just got too late. 

That's it for today. I'll finish up the trip in the next entry of the blog. I think I mentioned that we finally turned on the heat. But the sun is shining, there are no clouds in the sky. And we're back to our routine...deep water fitness and working out with our trainer. And looking forward to my baby coming to town! Have a great day!  

Views from the memorial. 

The ocean. The glorious ocean! 

The "My Dad is so Spoiled", edition.

Good Sunday morning! This is the end of the Thanksgiving weekend but wait!  There's more. I'm doing Thanksgiving dinner this afternoon. Let me backtrack and explain. 

About a month ago we received a call from my cousin in San Diego. She was hosting Thanksgiving dinner and had invited Uncle Buster and Aunt Pris for dinner. And would Uncle  David like to come.   Well. Uncle Buster and Uncle David ( my dad ) grew up together in Yellow Springs, Ohio along with my cousin's dad Uncle Doug. Dad was trying to tell me didn't have to go if it interfered with my dialysis treatment.  I told him it wouldn't be an issue. I worked out the logistics and started making plans. So Dad went to a family reunion in Ohio this summer now he wanted to go to a west coast reunion. We were going!  

The plan was to drive to San Diego on Thursday, Thanksgiving day and leave on Saturday. This would allow me to get treatment while in San Diego. We'd been warned about Vegas to Cali traffic so we pulled out at 6:00 AM. We stopped in Barstow for breakfast. Did I mention Brian did the bulk of the driving?  Did I mention we hadn't done this drive in over 25 years?  Traffic heading to Vegas was busy.  Not so much heading to California. At one point we noticed a snow capped mountain in the distance. As we got close to it, lanes opened up on the right side indicating they were truck run off lanes. :-O  I forgot that. We were going to go down the mountain...twisting and turning. Yikes!  Im glad Brian was driving. Looking over the side of the mountain just freaked me out And after we finally got off the mountain we were greeted with California traffic....on Thanksgiving day. Go figure. 

Anyway. With stops for breakfast and stops to stretch and give Brian a break, we arrived at my cousin's house just before 1:00. We were told dinner was at 1:30. It was based on Uncle Buster and Aunt Pris. They are in assisted living and would have use a transport bus and they could only stay so long. So we made sure David arrived on time. Oh and Uncle Buster didn't know Dad would be there. 

The transport dropped off my aunt and uncle. They had to come through the back of the house...they both use wheelchairs and there are no stairs in the back of the house.  Uncle Buster rolled in and looked to his right and there stood Dad!  I wish I had a photo of Uncle Buster's face when he saw Dad. And I wish I had a photo of Dad grinning!  They were delighted to see each other and stayed with each other the entire time. And they were cutting up. I got chased out of the backyard because they were so bad. Oh yeah. Thanksgiving in San Diego allowed us to eat outside if we wanted to. The weather was devine. 

I got the chance to see cousins I hadn't seen since they were kids .. And cousins I'd never met. And of course the cousin who invited us. Of course I knew her!  We grew up together. Yes. We had a wonderful time. And yes. Apparently this will take several installments. 

That's it for today. I'm doing treatment right now as the sweet potatoes are cooking. Watch me finish up the entire dinner by 4:00!  Enjoy your day!  And the spoiling of David continues!  

West coast family   Brian got in the picture and I answered the door.  Lol. 

Dad acting up. No surprise. 

Dad and Uncle Buster ramping up for trouble. 

The "Getting Ready", edition.

Good Tuesday morning!  Brian and I celebrated our 29th anniversary yesterday. We're now starting on 30 years!  Last night I read an article about couples who stay together vs couples who don't. It refers to couples as masters or disasters. The traits of the masters are expressing kindness towards each other and engaging each other. Engaging and acknowledging is something as simple as Brian wanting to go to the Harley Davidson store here and me saying sure, rather than saying I'm not interested in motorcycles.  Or joining him at a ceramics class. It wasn't for me for many reasons and I quit, but I tried it because he liked it. Or having him drive way across town to go a certain store or market. I guess we really just enjoy each other's company. And that's not a bad thing! 

Our celebration was low key this year. Dad wanted to celebrate with us. He offered to take us out to wherever we wanted for dinner with the stipulation that it cost no more than dinner for 3 at the Golden Steer. Well, I'm beefed out for a while. I love a great prime rib or ribeye, but Dad has worn us out at Fogo de Chao. And we couldn't decide what we wanted. So Dad recommended The M Resort buffet. Jackpot!!!  And that's where went for Sunday brunch. That took care of everybody. We got there and Dad went and got the flutes of champagne. We toasted out 29 years and we were off!  Dad got a steak and baked potato. I headed for the lobster bisque. Brian tried baba ghosh and quinoa.  Then I tried tried ginger crab legs. And tempura shrimp. Then regular crab legs. Apparently I wanted seafood. Brian found the prime rib. And for desert little chocolate mousse shooters. By then I could only try a spoonful of each. So full. Lol.  Oh yeah. I'd noticed oxtail soup while checking out the food. So Brian got a bowl. Yes, it was delicious!  

The actual anniversary day, Monday, we went to the movies.  We saw Fantastic Beast and Where to Find Them. In 3D DFX (enhanced sound ... aka loud!  Lol). We've read and seen all the Harry Potter books and movies....remember Shawn was just the right age when Harry Potter first came out. Yes we preordered books. Never stood in line at midnight, though. I miss Borders. :-(  Anyway. I enjoyed seeing another perspective of the wizard world...the US group. Enjoyed the movie and found out there will be more movies. And as a side note the book Fantastic Beasts and Where to Find Them was referenced in one the Harry Potter books for a class taken by Harry and his friends. We got home and Brian cooked spaghetti. He's gotten pretty good!  

We're starting the holiday season. I hate that my baby is so far away. And it it's too far for a short (long) weekend visit. So as I've done before, I've ordered a Thanksgiving meal for Shawn from Honeybaked ham.  Yes I spoil her and I will always spoil her. She's my baby!!!  She asked for and will receive a smoked turkey breast. Sooo good. And potatoes au gratin, sweet potato casserole and broccoli casserole.  She requested that I didn't order the green bean casserole. She didn't like it!  She said she'll try roasting brussel sprouts. Heh. I hated them as a kid. Now we cook them in a different way and they taste good. I digress. She will be going to two dinners on Thanksgiving day but she'll have her own left overs!  

On the dialysis front I was reading a blog I'd written a few years ago about the holiday schedule in the dialysis center. And how I had  to watch (more) my do and fluid intake. Being on home hemo has allowed me to eat pretty much what I want. Of course I get my labs and watch my numbers, but by doing hemodialysis more frequently the phosphorous and potassium flush out. At one point I was told to eat more foods high in potassium!  Bananas! Avocados! Orange juice! Potatoes! Sweet potatoes!  I still do them all, but in moderation. Anyway. This allows me to have a nice Thanksgiving dinner.  I don't miss the incenter dialysis. At all. I may bitch and moan and complain about dialysis but at least I had choice in my treatment. It's not easy and it's inconvenient. But it's what's keeping me alive. Some days I tell Brian I hate dialysis...and I do, but I still look forward to it. Eh some days I hate my life,but what other choice do I have..no I'm not in the rabbit hole. For the next couple of days we have to juggle to times for dialysis. It gets in the way of life.  But then it is why I have life. Eh. We work it out. 

Finally. In the middle of November. We finally turned off the air conditioner. Heh heh heh. Love it!  No heat yet. Maybe next month?  Heh heh heh. Love it out here. And we finally..after over 2 years...unpacked a crapload of photos. I have some real treats that Brian has to scan. He complained to me that he didn't know where the wedding photos were.  Of course I knew exactly where they were.  I packed them!!  Lol. Went straight to them. He scanned a wedding photo he liked. 29 years ago. That's it for today. We go the trainer for an hour of torture. :-/  And then we'll feel better.  Lol. Have a wonderful day! And a wonderful holiday!! 

Then

Now

The "A Special Day", edition.

Good Friday morning!  Happy Vererans Day!  Ahhhh. I just had a really nice stretch.  So today is a special day. It is Veterans Day. My Dad is a WWII veteran, Brian's dad is a Korean War era veteran, my brother is a Vietnam War era veteran. My husband was in the US Air Force reserves during the first Persian gulf war. My nephew is currently in the US army. My godfather was a Colonel In the US army during the Vietnam war. My cousin was a Sargent during the Vietnam war and lost his life. My uncle served in France during WWII. My grandfather was a WWI veteran. The list goes on and on. Today is the day we honor them and thank them for their service.  

Today is also the birthday of my mom.  She would have been 92 years old today. I miss my mommy. Well into adulthood I had no problem cuddling next to my mom in bed. Nothing makes you feel better than just being with your mom!  Of course we had differences, but we'd talk about stuff. This is one example. When my parents moved to Las Vegas they joined a local Episcopla church.  A thriving church. With a fantastic choir. At some point a new minister was appointed. The new minister announced he was a non-practicing homosexual. OMG. The church went bat shit crazy.

People left. A lot of people left. Mom was torn. And we talked about it. We talked about how his sexual orientation affected her.  It didn't.  And did she enjoy his message. Well my parents stayed at the church and embraced the minister. In fact when Mom and Dad celebrated their 50th wedding anniversary, that minster presided over their renewal,of their wedding vows. I was extremely proud of my mom. Her entire life was learning and education. Educating herself and others. Granted, we had a lot of generational differences, but we could discuss our differences and would listen to each other's point of view. This is one of the lessons I learned from my mom. 

So today I celebrate the Vererans. And I celebrate my mom. Dad and I reminisce about her every now and then. She spoiled both of us. Every time Mom and I talked on the phone she'd tell me she thanked the Lord for me. She'd also tell me that my father was a good many and she loved him. And then she'd accuse me of taking her comb and brush back to Detroit after a visit to Las Vegas. Lol. Because if you can't find something that you misplaced, it's always Pat's fault! Anyway. I have great memories of my mom. Lol. I am a lot like her in many ways. And there are vast differences between us. But there was always love. <3

On the dialysis front. Well there's nothing!  And that's good. My trainer is pushing me more and I'm surviving. Heh no I didn't even whine at her this week. Lol. During training, music is playing and it's not unusual for Brian and I to start singing.  Tony, the gym owner plays songs and tries to stump us. We usually get the songs, but every now and then we don't have a clue. We did a nice rendition of "Bring it on Home to Me", by Sam Cooke and Lou Rawls. And then...the original "Gold Digger" by Ray Charles came on which made us chuckle since we had just listened to Kanye and Jamie's version on the way to the gym!! 

Well that's it for today. Enjoy some music. Hug a veteran!  

The "Dialysis Sucks but I'm Feeling Good", edition.

Good Wednesday morning. We usually have deep water fitness MWF morning, but our instructor called in sick. We think she has a hangover.  Moving on. Dialysis has been relatively uneventful. Brian changed some settings on the machine to make set up easier.  Whatever that means. Lol. Anyway. While riding in the car this morning I just had a random thought that I'm feeling good. And I am. So yeah dialysis sucks, but all things considered I'm not doing to bad. I still need the parathyroid surgery. I attempted to take a smaller dose of the pill to control my parathyroid and like clockwork, I had the bad reaction and was out of Commision for the next 12 hours. Ugh 

For some reason we didn't do treatment Friday evening, so I did it Saturday morning. This meant I missed sorority meeting. :-(  And we'd finish just in time to make it to watercolor class. We got there and got started. Within the first hour I got hot and I got dialysis brain...I couldn't concentrate. Bleah. I ended up going to wait on the car. Put the windows down and reclined for the next 2 hours. Eh. I have days like that. I wasn't sad. My brain and body just didn't want to cooperate and I just rolled with it. 

So this past Sunday we took Dad to Hooters for our Sunday brunch. For chicken wings. Really. No really. Lol. I asked Brian if we should go to Buffalo Wild Wings (BWW) or Hooters.  He suggested Hooters because we hadn't been there in years. Uh huh. Anyway. We ended up at the Hooters Casino since it was close. Sort of. And found the restaurant. Sunday was sports day so many TVs and football games.  Because we're on pacific time games start early out here. And for the record Dad was nonplussed at the servers outfits. He was much more interested in chicken wings!  Rofl. 

And because it was a sports bar (wink wink), most of the patrons were male. A few women came in with dates or partners and were involved in the football games. We chuckled that our server was probably younger than our daughter and that the uniforms were stuck on an 80s time warp.   Dad goes over the menu. He decides which sauces he wants. And Brian and I decide which sauces we want. We're ordering 20 wings so that allows 4 different sauces. We thought. The server tells us 1 sauce per 10 wings. What!?!! BWW is a lot more flexible. Anyway. Before we can discuss this dad orders the sauces.  Lol. He picks the General tsao, 2 peppers.....and 911, 4 peppers (!!!!) :-/

I'm think OMG, we're not going to be able to eat those 10 wings. When they come Brian tries it first. He didn't die. Then I tried one. It was just hot enough. It wasn't fire like I thought it would be. It was actually pretty good as were the General tsao wings. The final consensus was Hooters wings were good. And we watched football. Dad enjoyed the wings. Lol. And we didn't eat them all. We took 5 wings home. And we devoured the 911 wings. So now we have to go to Buffalo Wild Wings for a comparison. 

Well that's it for today. Wednesday is an off day for dialysis. I look forward to Wednesday's. Going to the movies today and maybe have Mexican food for lunch. Oh. We're going to be fine we always are. There may be challenges. But we keep going! Have a wonderful day!  

The "Remembering November 2, 2012", edition.

Good Thursday morning. It's early and it's dark. Summer is long gone and were knocking on winter's door. And that's fine. Especially since I'm out here!!!  So what is special about November 2, 2012?  That was the day I was transported to the hospital via EMS because I couldn't breathe....pulmonary edema. Because my kidneys weren't working..couldn't flush out fluids, the fluids accumulated in my lungs. And let me tell you..that's a horrible feeling. 

November 2 is the day I found out my kidneys failed. I was sick in the months prior to this. And I was seeing doctors for separate symptoms. By the time my primary physician sent me for testing it was way past time. As a matter fact, I was supposed to go for tests on November 2. Instead I ended up in the emergency room. Tests were taken in the ER. I was told my kidneys had failed and I'd have to start emergency dialysis immediately. I was relieved  to know why I felt so bad and that this dialysis, which I knew nothing about, was going to make me feel better. 

I was in the hospital for 8 days. Admitted on a Friday and I left the following Friday. I was in ICU for 3 days.  And I admit I don't remember the first day and the 2nd day is fuzzy. I didn't come out of the fog until I had several dialysis treatments. I realized that I had an emergency catheter inserted in my groin...to attach me to the dialysis machine. 

I was in the hospital on Election Day. I was surprised and pleased when an election official visited the patients  to make sure they voted. I'd already voted by absentee ballot because I was sure I wouldn't be able to stand in the lines on Election Day.  

I also want to acknowledge my nurses. Yes. I saw plenty of doctors, but it was the nurses who took care of me and answered my questions. My ICU nurses were with my almost 24/7. My nurses on the regular floor checked on me,,lifted me off the toilet..yes I was that weak. Lol I wanted the urine catheter out and got it out. I could walk to the bathroom, but I couldn't get up off the toilet. I had to use the alarm to call someone...the toilets are too low. I've ranted about that before!  There was the nurse who woke me up in the middle of the night to make me practice walking with a walker. I bitched and moaned, but she got me talking about my favorite subject...Shawn. And before I knew it I had walked up and down the long ass hospital hall. Lol. The nurses in the dialysis unit. The ER nurses need a medal. Wow!  

I met my nephrologist for the  first time after several days. He asked who got me to the hospital. I told him my husband. And yes Brian was in the room at the time. The doctor told me I should thank him. If he'd waited any longer I'd have been dead within 2 hours. That's kind of sobering. And yes, of course I thanked Brian!! I think we were both taken aback. My regular doctor came to visit me everyday. Yes we have that kind of relationship. He'd been my doctor since I was in my early 20s. He diagnosed my acute intermittent porphyria. I made him famous for that. Lol.  Yeah. Another story for another day. 

Well. It's been four years. It's been a hell of ride and it's not over. I've adjusted. I'm living my life. I have good days and bad days.  Much more good than bad..but damn. The bad days are horrible. Ugh. I've adjusted. And I have my family support. Brian, of course. I'm overwhelmed by his love and caring and attentiveness. Many days I tell him he doesn't deserve this. He replies that I don't deserve it either.  And then my dad. My 90 year old dad. He's checking in on me and loving on me and Brian. And then there's my daughter. Who keeps on trying to give me one of her kidneys. I clearly get that she doesn't want to lose her mom. And I'm doing all I can to make sure I'm here for a long time. They all keep me going. 

I want you to know that there is no average dialysis patient. The are many reasons for kidney failure. Some people are born with one of many different conditions that affect the kidneys. Lupus  and diabetes also cause kidney failure. I've mentioned that the number of diabetics at the dialysis centers was surprising. And health care professionals are always surprised I don't have diabetes. Hmmph. Kidney failure can also be caused by certain drugs and even drinking to much soda. ..or pop. Depending on where you live. My kidney failure was caused by my genetic blood disorder..acute intermittent porphyria. And there have been others in my family who have it or have had it...right along with the kidney failure. Ain't I'm special.  Heh. Oh yeah. Check your meds to make sure that side effects don't include kidney damage or kidney failure. 

Anyway. That's it for today if you want to read about the early days of my journey, the early blog entries  detail it quite nicely. My memories were much clearer then. Lol. All things considered, I'm doing fine. We're thinking about going to Hawaii for our 30th anniversary. And I can make it work with sufficient planning. We're going to visit relatives in California soon. Planning on visiting Shawn in the spring. Because I'm that kind of mom!  And I'd like to visit Michigan in the future. I think we can swing that also. 

I want to thank my friends for the words of encouragement when I leap into the rabbit hole. Your love and concern pull me out. And I'm ready for the next day. Please. Please get your kidneys checked every year. Sometimes the failure can be preventable or even managed. I don't wish this on anyone.  And on that note, I'm going to enjoy this beautiful sunrise outside of my window. Have a wonderful day!!

My family. I need to take a photo which includes Dad.  Shawn can figure that out! 

The "It's November Already!", edition.

Good Tuesday morning!  Last week a dear friend and her husband were in town to celebrate her birthday. We had a wonderful time together. It's always great when people contact us when they visit Las Vegas. We miss you!  And also this past week was the birthday of one of the nicest people I know. Ann Marie worked for me as one of my project managers, but she was just so much more. Brian and I still marvel how she just showed up at our house one day to see if she could help us pack for our move to Las Vegas. We honestly would not have made and progress had it not been for her. 

So when Brian runs errands I usually ride with him. I may or may not get out of th car. Yesterday we went to a grocery store to get some items (including a few honeycrisp apples. Yumm).  I waited in the car. The grocery store is under the approach for airplanes landing at McCarran Airport. I'll see commercial flights and private airplanes..lots of private jets coming into Vegas. Every now and then an armed forces plane approaches..both transports and jets(!). As a matter of fact the other day Dad and I noticed a giant propeller plane on the landing approach...lumbering through the the sky!  Lol. 

Anyway. I'm in the car watching planes approach for landing. It's nonstop traffic. Brian and I chuckle about people chomping at the bit to land to hurry up and hit the casinos. But this is what I noticed while I was waiting. To the west of the grocery store is a park. The park has its fair share of homeless people hanging out there. They park their grocery cart o' belongings by the fence that separates the park from the parking lot.  The people on the planes have no idea that they're flying over these homeless Las Vegas residents. And yes, the homeless population is large out here. Anyway it was just a sobering observation. 

November 2 marks the 4th (!) anniversary of me being rushed to the hospital because I couldn't breathe and then being  told my kidneys had failed. Can you believe it's been 4 years?  The average lifespan of people on dialysis is 5 years. It appears I'll be surpassing that milestone. It hasn't been all fun and games. As a matter of fact, right now I'm fighting blisters on my hands and fingers due to the porphyria cutanea tarda. And that happens when I get the iron injections...because I can't produce enough iron...which triggers the porphyria.  But since my kidneys are whack, I need iron injections.  Sigh. Yes. My nephrologist knows about the effect of the iron injections. And yes we try to put the injections off as long as possible, but it was time. I get tired when my iron reserves get low. So I just deal with the side effects. It'll normalize soon. 

All things considered I'm still doing ok. I'm back swimming. My skinned knee (and toes) are healing nicely. The blister on my toe finally did its thing and I can now wear normal shoes again. It's time for the manicure and pedicure but I'll wait another week for everything to clear up. No need to startle the nail tech with my gnarliness!!! 

Well. That's it for today. I was going to retell the events of the week of November 2, 2012. And I will on the next entry. It's interesting to read what I wrote 4 years ago versus what I remember now. Anyway. Enjoy your day. Take time to just observe and wonder at the world around you. Kiss and hug your loved ones. And have a wonderful day!  

The "Always Looking Forward", edition.

Good Thursday morning!  We never stop do we?  Always planning. Always something to look forward to. My most exciting event for now is I'll start training for nocturnal home hemodialysis in January. Well yes, after the holidays. Makes sense to all of us!  So I know you're asking, "What is nocturnal home hemodialysis?"  I am also sure you're kinda guessing what it is. Yes. Home hemodialysis at night. While I sleep.  In bed. It's a relative recent treatment option. I'll explain. 

First let's discuss the benefits. I know you know I switched from incenter dialysis to home hemodialysis because it was better for my body, it was more flexible, I am able to do treatment in the comfort of my home...and the most important benefit of all..it improves my mortality, my lifespan. It's a more gentler form of treatment. The removal of toxins and fluids is slower and more often, so less strain and shock on my organs, specifically my heart. Nocturnal is even gentler and the outcomes are comparable to a cadaver transplant....receiving a kidney from someone who has died. 

I learned about Nocturnal from members of a home hemodialysis users group I belong to. I liked the idea of doing this while I was asleep. This past summer I asked my nurses about it. They said the center didn't offer it because Davita (the dialysis corporation) hadn't approved the center. Awwww. Well fast forward to my September monthly appointment and I was asked if I was still interested. The center was approved to train and offer nocturnal home hemodialysis. And yes, I was the only person to ask for it. Woot!!  A little info. After asking about other home hemo patients, we found out that there are only about 25 ..25!!!! Home hemodialysis patients in southern Nevada. What???!!?   Apparently people are afraid of needles. But I'd rather stick myself with a needle than have tube sticking out of stomach indefinitely. I digress. So here we are. I'll start training in January. I'm excited. Sort of. Lol

And we're planning for Shawn's visit for the holidays!!  We are counting the weeks. That's my baby!!!  But in the meantime I'll continue the tradition of sending her a smoked turkey meal from Honeybaked Ham for Thanksgiving.  Yes, she'll have dinner with friends, but she'll also have her own dinner with leftovers.  

Brian and I are planning for our 29th wedding anniversary in November. 29 years!!  It's been a while!!  We have early voting out here, so there's that. We're considering heading to California for Thanksgiving for time with relatives. And yes, I'll still prepare a  Thanksgiving dinner for the 3 of us. 

That's it for today. Still nice out here. Friends continue to contact us when they come out here. We're delighted to see them!  Brian and I seem to stay busy. And we are enjoying life. Yes, I have ups and downs and good days and not so good days, but we're hanging in and moving on! Hope today is a good day for you!! Have a wonderful day! 

Smoked turkey breast. Looks good. Tastes good. 

Travel case for my kidney. I'll be using this for car trips. 

The "Everything Always Happens on the Same Day", edition.

Good Sunday morning!  Recovering from Saturday. Because everything was scheduled for Saturday!  We started with our early morning weekly trip with Dad to the casino. This is his weekly ritual and we go with him. One hour at the casino on Saturday morning. While at the casino I started feeling kinda punky. This was not the day to feel punky. We had thangs to do. So after we got home I just laid down for about 15-20 minutes because our next event started at 9:00 and we wanted to get there before it got crowded. 

Oh. What was the next event?  My dad's church had their yearly major fundraiser, Lobsterfest!!! Our first year in Las Vegas, Dad told us about it.  The church sells lobsters, fresh or cooked for some ridiculous price. We were like yeah!! We want to go and get some lobsters! Dad was in it for the clam chowder. So that first year Dad rushed us in and out of the fair. Let me try to give you visual. The church is nothing like churches in Detroit. The church is made up of several buildings surrounding a courtyard. The sanctuary is separate building. The fellowship hall is a separate building.  And there are other rooms, classrooms, meeting rooms, even the bathrooms are separate from the sanctuary. And these buildings form a nice square courtyard. And this is where the Lobsterfest is held. 

So that first year we went the fair it looked interesting with all the booths set up, but as I mentioned, Dad took us to the room to get the (prepaid) lobsters...yep he paid for them. And then ushered us to the area to purchase the clam chowder and introduced us to people on the way out. We spent no more than 15 minutes there. After the fact Brian and I are like, "hey. We would have liked to check it out". The plan was to spend more time the following year. Well last year was the following yearand unfortuneatly I was sick as a dog. I went with them to the Lobsterfest, but I stayed in the car because I just didn't have the energy. 

But this year!!  This year we were ready. So now I can tell you what was at Lobsterfest. Lots of raffle tickets, of course..and Dad won a bottle of wine. Lol. There was a baked goods booth, a flu shot booth, a take your blood pressure booth and a Mexican food booth..selling tacos, posole, margaritas, horchata and some other items. Then there was the room where you picked up your lobsters, a children's activity area, a man playing a piano..and he was good. There was the requisite church ladies craft table with crafty things and Christmas things. Several jewelry booths, a guy selling woodworking crafts. The college guys in charge of beverages...including spirits!  Of course they were put in charge of wine. Lol. Snack booth, a little restaurant selling meals like turkey and dressing and including the clam chowder and a room for a silent auction. And people roaming around in lobster costumes, a couple of roving balloon artists and people walking around displaying or modeling raffle items. 

We had some tacos...Mexican street tacos. Oh my goodness, the meat was seasoned so good!  And we put slaw cilantro and limes and some hot pepper oil sauce or red sauce or green sauce on them. And my dad loved them!  Brian got some brownies at the baked good booth and a loaf of sourdough bread. Dad got his chowder. Of course we got our lobsters. And Brian had the presence of mind to bring our grocery bags with us so we could cart away our treasures!  We stayed about an hour and had a good time. And the place was busy. Lots of people coming in for their lobsters!!

Afterwards we came home, I rested a little more because the next stop was the watercolor class!  For some reason UNLV put us in an impossibly small room. Brian and I had to share our paint pallet. But it worked out ok. The next stop was the Oktobest at the the condo.  German sausages, sauerkraut, beer, wine..and some foods I had no idea what they were. Something I tried was pretty awful. I took a bite and spit it out. I rarely do that. :-(  But we meet other residents and had a nice time. I wasn't really hungry, but I did eat the beans!!  We stayed about 45 minutes and then it was time to go. I was tired. 

And then I did treatment...after a nice conversation with Shawn!  Lol. Long day. No nap. Not to bad!!  Today will be a lot easier. 

Finally early voting started yesterday in Nevada.  We plan on voting later this week..at the mall. As expected, voting was crowded yesterday. We chuckled at the idea of rushing out the first day. There were lines...like on Election Day. Lol. Anyway. Still warm out here. More events and activities on the horizon. And I'm positive stuff will still fall on the same day in the future!! Oh yeah. What am I going to do with our lobsters?  Making some lobster Mac and cheese of course!  That's it for today!  Have a wonderful day!!