The "TMI", edition.

Good Monday morning!  And it's Memorial Day. We did the holiday meal yesterday. Dad, Brian and I have brunch every Sunday. And Dad pays one week and we pay on the alternate weeks. This Sunday was Dad's day to pay, but we planned the meal. So, Dad paid for the meal. Lol. We had ribs and chicken prepared by Jiohn Mull's Meats. We also purchased hot sausages and bratwursts. They make for quick meals when we don't feel like cooking. I also made "the" potato salad. The potato salad is an old family recipe. I remember watching my grandfather make it. Then my mom. And I was able eventually make it just by having watched them for years. I call it learning by osmosis. Lol. And Shawn can make it now. Albertsons, a local supermarket had fresh sweet corn 8 for $1.00 so that got added. We also had baked beans and slaw. When it came time to eat Brian forgot to put out the slaw. He saw the potato salad and that's all she wrote!  Lol. Everything was delicious and as always, we have waaay too much food. 

So TMI. Life with End Stage Kidney Diseass and dialysis. I got thangs going on. My life is a little different form yours!  In case you missed it, I don't urinate. That's right. No pee for me!  Makes a road trip easy. For me anyway. Lol. But!  Some of my meds give me some ugly digestive issues. And gas. Lots of gas. My special talent is now being able to walk and fart at the same time. Oh. And once I've started treatment (dialysis) I can't get off if I need to go to the bathroom. Not urinating comes in handy, but I still poop. And diarrhea is not uncommon for people on dialysis. So. Imodium is my friend. It is actually the friend of many people on dialysis. Early on, when I was incenter and my body was still trying to acclimate to the disease and dialysis and the new meds, I spent a lot of time in the bathroom. My nurse at the dialysis center started giving me Imodium. Now that's a wonder drug!  I have a supply at home. Never leave home without it! Or take it before you lave home!  Hahahaha!!!!  Ahem. 

My blood pressure is now chronically low. The first month I started home hemodialysis my baseline blood pressure dropped and I stopped taking the BP meds. And it's stayed low. So I periodically get light headed and dizzy. Sometimes when I stretch, I feel like I'm going to black out. It's fleeting, but it's a scary feeling. I just have to wait it out. I have to sit up slowly sometimes. And since I have fluid removed from my body on a regular basis, I get cramps periodically. My toes will splay every now and then. I'll feel the cramp coming on. Then watch my toes do their thing. It doesn't really hurt and it eventually goes away.  Always fun when it happens in the pool. 

My skin is fragile and tears very easily. And I'm sensitive to the sun. In the desert. Yay?  I have random scars and tears on my hands from bumping against things and scratching. And I'm sensitive to iron.  I'm not making much iron because of the lack of kidneys, I need iron injections. Oh yeah, the injections take about 20 minutes because it takes time to inject that dark green thick goo into my body. And I can taste it during the injection. Yuck. Anyway. So when my iron numbers are good...for my body, my body also reacts to the iron. I'll start getting blisters. It was an issue but livable when the blisters formed on my hands and fingers , but then the blisters decided that should form on my feet and toes. And even that was ok, but then one wanted to form between the my big toe and it's neighbor...on the bottom of my foot. And. Let's add another blister on the the joint of the big toe on the other foot. Walking that week was not fun. >:-(  

Normally you should leave blisters alone. Bursting them is an invitation to infection. But I needed to walk. The good news is we are the King and Queen of asceptic technique. We have more sterile equipment than you can ever imagine. And we have triple...TRIPLE antibiotic ointment!  With the blessing of my nurses and nephrologist, we attacked those blisters. Well that's enough of that!  It's not that dire and we all do what we need to do. 

That's it for today. It's time for a manicure and pedicure. I've discovered that keeping my nails done protects them when I swim. When I take the polish off..because, you know, after a few weeks it looks bad, my nails break. So a manicure and pedicure is In the works today.  Oh yeah. Saw Guardians of the Galaxy yesterday. In 3D. Enjoyed it. A lot! 

That's it for today.  Enjoy your Memorial Day. I celebrate my grandfather, Atty Odie Uddyback Sr., my uncle Dr Odie Uddyback, my great uncle Thomas Uddyback and my cousin Lee Edward (Butch) Perry.

 

The "Let's Talk Care Partner", edition.

Good Sunday morning!  I woke up to the brightly shining sun this morning. Yesterday was a rare long day for me. And Friday was also a bit longer than usual. You know how all activities tend to converge on the same day?  Lol. That's what happened but it also ties in the topic of my care partner. I had come up with this topic a few days ago but I've since forgotten what the impetus was for the topic. But it doesn't matter. Brian's been here for me every step of the way. 

Friday and Saturday we went from one end of town to the other. But that's ok. Because..did I tell you we are currently house hunting?  Anyway it was ok to drive across town. We were able to see many of the Las Vegas/Henderson neighborhoods. Where are we looking?  What part of town? I actually don't have a preference..well there are some areas that are a definite no, but you know what I mean. 

Saturday I had a 10:00 - 12:00 workshop with one group, The Society, Inc in the morning. Then from 1:00 - 6:30 I worked on the committee with the sorority for its annual Casino Day. I think it's more like a  game day. :-)   Anyway. Both places were on the far south side, an area that neither Brian nor I were familiar with. Well, let me state that Brian is the driver and I am the navigator.  And we rarely use GPS. I look up the routes and map them out and commit them to memory. And I did it yesterday. Which was fine because sometimes GPS doesn't give you the most direct route. And with the 10:00 appointment we went to a gated community.  GPS had us going through the the back entrance. 

The 2nd location of the day wasn't too far away, but again, we just weren't familiar with that side of town. This time GPS got us there with no issues. Although it tried to give us some convoluted route for the way back home. We just ignored GPS and backtracked and made it home. Lol. 

So the care partner thing. Brian drove all day Friday which included swimming at the furthest end of Henderson to delivering something to the way other side of town, and all day Saturday. But that's just part of it. For my early Saturday meeting, he dropped me off, ran errands then came back to pick me up. For the casino day, he actively assisted. He relished his role as a honey-do. What, you ask, is a honey-do? AKAs husbands/partners are called honey-dos.   Honey do this, honey do that. And for the record, the kids are honey don'ts. Honey, don't do that. Lol. I was a Honey don't when I went with my mom to the AKA boule in Dallas in 1968. The term is not new!  Lol. 

The Casino Day started at 2:30 but the committee needed to be there at 1:00 to set up. I'd had treatment the night before and I was slowly recovering. But I was trying. The committee needed to set up tables and food. Brian was very much needed!  And when someone needed him, he was there. We finally left just before 7:00 PM after cleaning up. People ate,  played games and won prizes!  Everyone had a great time. And I was tired. I was so tired my body ached. Every single bone and muscle in my body ached. Lol. I was tired like I hadn't been in a long time. As a matter of fact, I don't recall having such a long day in while, certainly not since we've move to Las Vegas. But. I did it. Somehow I made it.  And Brian was there with me every step of the way. Keeping me going and driving us home!  I got home and fell asleep. And slept longer than I had in a very long time!  Feel good now, though!  Lol. 

So my care partner. Brian is my partner in this dialysis journey. Sometimes I'm not sure if I want to call it a dialysis journey when I think it's more accurate to call it a kidney failure journey. Whichever it is, I could not have done as well without him. I clearly could not have transitioned to home hemodialysis and nocturnal hemodialysis without him. And he's done this without question. And yes I know people who do this alone. I am in awe of them. 

Prior to doing dialysis at home, all Brian did was drive me to and from the dialysis center. He did see how spent I was when I finished treatment. Dialysis patients look like they've lost a fight when they finish incente treatment. Anyway. Early on he got to witness me fainting from the dramatic blood pressure drop...also known as crashing. Ugh. When I found out about home hemodialysis I discussed it with Brian. We went to info sessions and he and I both then understood that it would be a 2 person operation. He was all in. He says if home hemodialysis would alleviate the crashing and would make me feel better...and would be a gentler and more effective dialysis treatment, he was in. That there should be no question that he would assist. We trained for 4 weeks.  

My care partner, my husband,  has learned how to use and master this "portable" dialysis machine. The set up up, the testing, administering meds as needed,  and knowing how to address alarms and issues. He orders supplies, makes the calls when needed, practices the asceptic technique and records the information. What do I do?  I take care of and clean my access sites and insert the needles. Brian draws the line at sticking me with needles. Because he doesn't want to hurt me. (It doesn't hurt, but I prefer to stick myself anyway).  

Why use the term care partner instead of caregiver?  Well first of all Brian doesn't like the term, but more importantly I am very much involved in my own care. Think of it as I make the plans and Brian executes the tasks. We are in this together. So I may complain some days that he hovers over me..and he does (helicopter husband). But he's seen some pretty scary stuff when it comes to my health. He was there when I couldn't breathe because of the pulmonary edema. He was there when I fainted in his arms at the dialysis Center. He was there when I acted stupid and passed out here at home. He was there when the endocrinologist inserted the needles in my neck to reduce the parathyroid. He is my partner in this and I can never express the amount of gratitude and love I have because of this. But I sure do appreciate and love him for this.  He is making sure I am living life as best I can. And like yesterday, when I tried to do everything, he was right there helping me along. And I did do everything. It was hard and it hurt, but we made it. 

Well that's it for today. I was so tired that I passed on treatment last night. But!! I'd done treatment the night before so it's ok. We figuring out what time to do it today. Flexibility yay!  Have a great day! 

Brian and I at Alpha Kappa Alpha Sorority, Theta Theta Omega Casino Day. 

Somehow we managed to wear pink and green(!). Well, I supposed to wear pink. :-D

Thanks to Soror Cherlyn for the photo.

The "Mother's Day Weekend", edition.

Good Tuesday morning. I'm a stickler for answering the question that was asked. Sometimes the answer is yes or no. I'm not willing to give additional explanation unless asked. And the same is true when I ask a question. If I ask a question that requires a yes or no answer, I'm not looking for additional information. That being said I understand that there are exceptions to the rule. And that's all I'm going to say about that. 

Mother's Day weekend actually started Friday afternoon. Well.  Not quite Mother's Day related. We started looking at houses/condos Friday. A unit was available in a community I've been looking at for years. It was love at first sight. It had the space, the square footage, the community was gated, a 2 car garage, a little patio, and the pool and hot tub were both directly in the back of the unit. The down side was work needed to be done. The (white) carpet needed to go. The kitchen was going to be an entire redo. And some work needed to be done on the patio.  The good news is that (and I watch way too much HGTV) is there was room in the budget. The asking price and my preapproved mortgage would cover the work. I started looking at stoves,novens and kitchen cabinets when I got home. The real estate agent sent us the paper work that evening and Brian and I had completed it all (all electronically!!) Saturday morning.

The the bottom fell out. Bottom line was there was lien in the house and the seller was attempting to get the buyer (us) to pay the lien. WTF??? And the lien was $50k. Well!  The deal was killed. The audacity and amount that was expected of..pay someone else's lien indeed, softened the blow of loosing the property. So the hunt was on again. But not at that moment. We had a Mother's Day dinner to go to. 

Dad wanted to treat us to a nice restaurant for Mother's Day. I selected Lawrys, The Prime Rib. Brian and I hadn't been there since our anniversary in 2014. And Dad had never been there. Well, you know my Dad researches the restaurants before we go..yes Google and Yelp. He was all in. And you know he likes beef. We went Saturday evening because the restaurant does not open until 5:00 PM on Sunday..and Saturday for that matter. And we thought we'd avoid the Mother's Day crowd. And we did. It helped that our reservation was at 5;00. Lol. 

So anyway. We all pretty much knew what we were going to order. Lawrys has great prime rib, but it is also an experience. Brian calls the waitresses handmaidens because of the uniforms. A spinning salad is prepared at the table. And a master carver rolls a huge covered cart to the table to take your order.  They carve the cuts at the required doneness right there in front of you. The waitress asks what you want and relays it to the carver. You also have a choice of creamed spinach, cream corn and your choice of mashed potatoes. The carver prepares the plate.  The waitress also serves Yorkshire pudding. Whew. Yes it's a lot. And it was good. Yum yum yum. Yes, I got the smallest cut of prime rib.  I almost finished it. I didn't finish the potatoes or the corn. Dad and Brian had enough left over to take home. Let's just say a good eatin' time was had by all. Did I mention that there is no need for steak knives?  The the prime rib is so tender and juicy and seasoned just right. Dad says that we'll be back. Lol. 

And on Sunday, With Brian's help, I cooked a big ole breakfast brunch. Scrambled eggs with cheese, potatoes, bacon, sausage and biscuits. And that afternoon we went to look at another condo. It was...eh. Not quite there.  And the unit was a corner unit which Didnt appeal to Brian. But the real estate agent sent many more listings so we're still looking. 

Finally my baby called Sunday. I enjoy talking with her. She mentioned that she baked some vegan snicker doodles for a friend. And they came out just fine!  Love my baby!  

Went to my monthly dialysis meeting yesterday. All is well. My blood pressure is low. Sometimes I get dizzy, but I have a med for that. The iron shot last month gave me blisters. Yay?  They're finally going away. It helps that my health team is pretty cool. My nurses, my dietician, my social worker and my nephrologist are great. And they listen to me. My nephrologist remarked that he was reading about my blood disorder. He chuckled that back in the day that werewolves and vampires were probably people with porphyria because of the sensitivity to the sun. Lol. This wasn't news to me, but I chuckled because he was interested. Now, for the record, I was diagnosed with Acute Intermittent Porphyria almost 40 years ago and never had issues with the sun. But then I moved to the dessert. Ah well. 

That's it for today. Apparently it's going to be warmer in Defroit than out here. But I'll take my 78 degrees. Because it's gonna get in triple digits soon. And it'll stay there. Ugh. Take care and have a great day!  

 

The "I Haven't Forgotten My Blog", edition.

Good Thursday morning!  I know I know. I'm slacking on writing. I've been busy?  I've had good days and bad days?  I dunno. When I fall out of my pattern, the blog is the first to go. But there are some updates. So let's start. 

I had a second series of injections in for my neck to reduce 2 of 4 parathyroid glands in my neck. The parathyroid is controlled by the kidneys, but since my kidneys don't work...well.  Initially I was given medication to control it, but I started reacting rather badly to the medication. The other option is removal of the offending glands. There are 4 glands. In my case, 1 gland was running amok and a 2nd one was thinking about running amok. Anyway. The blood tests indicated that the injections are working and the glands are shrinking. I just needed a second series of injections. In my neck. Look. It sounds awful. But  when it comes to your life you do what you have to do. Dying verdus neck injections. Alex, I'll choose neck injections for $1,000.00.  The alternative to the injections would be surgery on my neck. I referred to it as slitting my throat, much to the chagrin of my doctors. Lol. Putting it that way the injections were much more preferable. 

We're adjusting pretty well to nocturnal dialysis. My numbers are fine. Im sleeping. Brian's sleeping. I'm liking the schedule.  It was supposed to be every other day. However that would mean I wouldn't be able to go to deep water fitness every other week. Why?  Because I'd be getting off the machine the morning of the class, but I'd still have the access holes bandaged. I cannot get in the water.  I keep those bandages on for at least 6 hours after treatment. And even though it hasn't happened to me, I've seen where people start bleeding again after they've been bandaged. Copious bleeding. Yeah. I can see me bleeding in the pool. Can you say close down the poll?  Ugh. So. My schedule is MWFSat nights. It works well most of the time.  Saturday morning meetings (sorority) can be tough, but I work through it. My blood pressure gets low so I get light headed from time to time.  I haven't passed out yet!  Yeah.  I know. It's not funny. 

And. We're moving. Not sure where. Well start actively looking at properties tomorrow. We had planned on looking for a larger place before we even moved to Las Vegas. And Dad is now ready. Well the time has come. We need a third bedroom/den/office. It's time. Plus I want a dog. I really want a dog. We all want a dog. Actually I want 2 dogs. Lol. And the condo doesn't allow pets. Except the people who have cats when they're not supposed to. Lol. And I guess I can count the stray cats hanging out. Who think they own the garage. Lol. 

Mother's Day is coming up. Dad will be treating us to Lawrys Prime Rib. Yes I selected it. We'd been on a seafood palooza for a while. I know you saw the photos of us at The Boiling Crab. And oh yeah. We'll be back!  The place opened at noon on Sunday. We got there about 10 minutes before it opened. There was a line.  Our group was number 50!  Oh yeah. I got my Mother's Day gift early. I got a new phone. Lol it was time anyway. And each time I get a new phone it's wildly different from my old phone. I have to learn the new phone. Grrrr. But I like it.  And the Sprint guy assured me there was no bomb in my phone!!!!!!  

Finally the owner of our training gym is going on tour with New Kids on The Block and Boys to Men...as their personal trainer. 44 cities in 10 weeks.  Staring next week.  Whew!  To say he is excited is an understatement. And we're excited with him. He'll be documenting to experience and the clients are looking forward to it. And yes, we'll miss him, but there are 4 other trainers to pick up his slack. We're all going to live vicariously through him. Lol. 

That's it for today. The weather has been nice...it is the windy season though. But so far only one triple digit day. The next day the temp dropped 30 degrees.  You'd have thought it was freezing out here. Lol. Anyway. Enjoy your day and enjoy your weekend!

My mom my daughter and me. One of my favorite photos. <3

Mother's Day gift 

The "No News Really Means We're Doing Ok", edition.

Good Tuesday morning. I really had to push myself to write something today. It's been a while since I wrote an entry. What that means is that we're just living our lives and getting stuff done. I'm adjusting to nocturnal home hemodialysis (NHHD). The first week or so I had issues as to where to place my access arm. The two needles are inserted in the inside of my left arm above the crook of my elbow. During dialysis I usually keep that access arm still. Longtime readers may remember me struggling to keep that arm still and typing the blog with one finger on my right hand while I was in the dialysis chair at the dialysis clinic. 

Sleeping and trying to keep an arm still and stationary is another thing. Who sleeps in one position all night?  So adjustments had to be made. The machine is on my left side when I'm on my back and that's fine. That's just where it should be. I hate HATE having the tubing, with the blood flowing, running across my body. Anyway, the tubing is long, but not that long. I also slept with a single pillow. Now I start out with 2 pillows and a throw pillow to hold my head up while Brian attaches me to the machine. And a pillow on my left side for under my left arm. 

Once I'm hooked up to the machine I toss the throw pillow and sort of slide down from a semi sitting position.  I can manuever to my left side and rest my arm on the pillow. The first days my arm and hand would get numb.  But I was also able to lay on my back and bring my arm down.  Anyway. Now I move pretty seamlessly. And I am now  sleeping through the entire treatment. So. Yes. It was worth it. We now have our evenings free and we aren't sure what to do. Lol.

We weren't going out too often in the evenings because I started treatment around 6:30-7:30 PM and finished around 11:00.  So we just went to bed. But now!  The possibilities are endless. Which brings me to...Brian and I will be celebrating our 30th anniversary in November. We're pretty sure we'll be taking a trip. Just trying to figure out where. One of my home dialysis groups has an Alaskan cruise planned. I opted out. And then my nephrologist says we should go. It's beautiful. And we need to see it before global warming gets out of control.  Well it's too late.  The cruise is in June. 

Places we are are considering are Hawaii, a cruise, San Diego and Disneyland. Yes we like Disney. We have to plan for any of the places because we have to bring the kidney machine and supplies and there are supplies that need to be shipped to our location. We'll see. 

Finally I took Brian to a restaurant that piqued my interest, The Boiling Crab. It did not disappoint. We were seated a table and the hostess lays a big ole sheet of paper on the table. The menu has snow crabs, king crabs, shrimp, oysters, mussels, crawfish and lobsters. You select a sauce you want you seafood cooked in. Then you select a level of heat. We got a cluster of snow crabs at a medium heat with a sauce called the whole shebang. It was a Cajun, garlic and lemon pepper sauce. Of course you can the individual one, but all mixed up was yum! 

In addition to the crab leg cluster Brian and I each ordered a 1 pound bag of shrimp, the whole shebang, mild. Yes. A pound was way too much for me. The waitress put bibs on us   The food was brought out plastic bags swimming in the heavenly sauce. And yes we used our hands. Lol. I don't recall seeing any utensils. Except for the ones that we used to crack the crab legs. And oh yeah. The shrimp came with the heads on. Yep. We had to peel those suckers, but oh man. It was so good. We left a big pile of shells on the table and we two happy campers!  We will be back!!  

That's it for today. Well. My potassium shot down a little too far so I get to enjoy potassium rich foods. It's just hard to do since I actively avoid them. Ah well. Today we visit the trainer. They moved to a bigger location and there may several trainers, clients and classes going on at the same time. But it's a friendly and welcoming place. There are people like me and Brian all the way to people who are uber fit. And one day I'll tell you about the program for people with Parkinson's. I whine about going. I go and whine while I'm training and then afterwards I feel great. Lol. Anyway. Have a great day!