Relaxing Weekend

We've had a really good weekend all the way around.  No plans, no activities, just hanging around the RV and doing normal stuff and finding little odd jobs that need to be done... nothing medical related.

I've been on the steroids for two whole days... haven't felt much different.  I did wake up during the night last night, and got up for awhile and then crashed on the couch, but ended up with a decent amount of sleep, and took a good nap this afternoon.

I was fixing tuna salad for lunch today, and was taking the bowl of tuna water drained off the tuna back to Bo's food area, and ended up spilling some on our duvet cover.  So that had to come off and put in the wash.  Then Brad discovered all the loose feathers that had come out of the down comforter, and saw that there were holes and really worn edges all over it. This thing is old!  We should probably just toss it out and get a new one, but those babies are expensive if you like the real down, and we do!  So we dragged out the sewing machine and zig-zagged all around the edges, and patched up a few holes.  It's not pretty, but it'll be back inside the duvet cover soon.

We took a couple of nice long walks yesterday totaling a mile and a half, and walked a mile this morning, with one more Budger-walk to go today.  I am getting faster, and not needing rest breaks anymore.  Seems so puny compared to what we used to do, but it sure is a big improvement from 2 or 3 weeks ago!  Sometimes this weekend it's been hard to remember I'm sick... until I spot the tubes coming out from under my collar bone and look at all the pills I have to take.  It's a nice feeling!

We've been busy making Thanksgiving plans with family, and I think that's a boost to my system too. I think things are going as well as can be expected at this point.

What are those crazy Bachelors up to now?

Well, to say the last month or so has been a whirlwind would be an understatement!  We know more medical terminology, more medical procedures, more prescription meds, more about hard work and exhaustion, than we ever thought we'd need to.

We've seen the good in people, the best in medical care, some beautiful weather, and have researched the best diet for me, and one that Brad can handle too.  At this point in time, our original plans would have us hanging out in West Texas before heading to Kansas for Thanksgiving, and then booking it south for a winter along the Gulf.  Funny how life gets in the way of plans.

We had decided we'd just ride out the winter here in southern Arizona, where the air is clear and warm, and we are happy and comfortable with my medical care.  And then we had a catylist that got us looking in another direction... The Tulsa, Oklahoma, area.  The original reason we started looking there is not even important, because we realized it is pretty perfect for us.  It is about 6 hours from both Jordan and Abby in Garden City, Kansas, and Seth and Brittanee in Memphis, about 9 from Sean and Kara in North Alabama, and just a few hours from my family in Kansas City.  Not to mention a lot of my extended family lives in the area.  There are wonderful kidney facilities in Tulsa, and several of the smaller surrounding towns have dialysis clinics.

We've been researching houses online, because at this point we really feel we need to settle down somewhere and get a handle on things, we need a bit more space for us all (Budger and Bo included) to spread out so the inside air I'm breathing is a little clearer, and Brad is needing some space to spread out his new electronics/music hobbies and not have to pick everything up again every day, since we aren't able to get out and about as much as we had been doing.

We finally decided that since our current house is on wheels, and we can take it wherever we want, that we should just go ahead and pick up and move to the Tulsa area and be able to look for a house ourselves.  And since we're heading to Garden City and Kansas City for Thanksgiving anyway, we thought that would be the time to do it, instead of going that far "east", and then coming back here again.  I also have to plan for dialysis treatments pretty far in advance when traveling, and just staying in that area after Thanksgiving seemed the easiest thing to do.

So... that's the direction we're heading.  We want to get settled and simplified.  This is not what was in the plans.  We had planned on traveling for about 5 years before looking for a place to settle down.  But we're going to make the most of this new curve that has been thrown our way.  I don't regret one single moment of the year we spent on the road.  We've met some of the best people, and have seen some of the most amazing sights.  I'm so glad we set out when we did, and were able to travel for a whole year.  Maybe doing a little traveling once we get used to this new life is in the cards... there are still a couple of big things we didn't get to yet that I'd still like to see.  But we've learned to roll with the punches, and make the most of what's thrown at us.

So, that's what these crazy Bachelors are up to now.  The last state we actually lived in was where Brad's childhood roots are.  Now we're returning to mine.  O K L A H O M A... Oklahoma... okay!

But I Wanted a Scooby Doo Bandaid!

Today seemed a little more hectic than it should have been, but that may be because it started at 4:30 a.m.  That's what time I needed to get up, make myself presentable, and have breakfast before driving the 20 minutes to dialysis, starting at 6:00.  They were all ready for me, and we got started right on time.

When I first started dialysis at the clinic, it was kind of a novelty to have my own tv and watch whatever I wanted.  I marathoned on HGTV for a few days, but even that can get old, especially if it's Love It or List It day, which I've found out isn't nearly as annoying if you just don't use the headphones!

Then my mother-in-law sent me supplies to Zentangle.  Google it if you'd like, but it's an awesome way to while away about an hour and a half, and not pay attention to anything else around you.  Here's my first two masterpieces.

After dialysis was a quick appointment with the kidney doc.  She gave me my golden ticket to steroids, but then also asked me about flu and pneumonia vaccines.  No, I haven't had any... ever.  Okay, while I'm at the pharmacy picking up prescriptions, get those shots, and delay starting the steroids for one more day, just to be sure I don't have any reactions.  She said usually you'd wait a week, but we've had to dink around long enough.

At the clinic and the doctor's they said we'd been doing so good on avoiding potassium that we were actually a little low, and we could sneak a little in now and again, so while waiting for my prescriptions to be filled and for vaccination time to start at the pharmacy, we went next door to the Mexican restaurant and I got to snack on some chips and salsa.  Mmm-mm-mmmm!!!!  So good!  Then I got a fajita beef sandwich with lots of lettuce on it.  If I can have something like that every month or so, I can be happy.

So we went back to the pharmacy for my shots.  She kept saying they would kind of hurt, but after you've been jabbed 3 times a day for 9 days straight in the hospital, trying to suck you dry of blood, a couple of shots in the arm don't matter at all.  Except they only do adult vaccinations at this pharmacy, and I just got plain old regular bandaids.

Finally it was time to go home, and Brad and I both crashed for naps.  No baseball game to keep us entertained tonight, so I'm going to start working on a Christmas project for a certain little guy.

A Blissfully Quiet, Boring Day

Today we had no dialysis, no doctor appointments, nothing to do but whatever we felt like.  So nice!

We took a couple of walks, totaling a mile, and I felt the strongest I have in quite awhile, and didn't need to stop and rest... Although I always have to stop when we pass the corrals to talk to and pet the horse.  We also just sat outside for awhile and enjoyed the warm temps while Brad played the guitar.

I put a pot roast in the crock pot this morning, and with some veggies thrown in, it made a really yummy dinner.

We're just settled in to listen to the first World Series game now.  I've done a lot of long hard thinking about who I'm pulling for, and I've decided I have to pull for the Cubbies.  I know everyone has been on pins and needles about that.

The rest of the week gets busy with 2 doctor appointments and 3 dialysis sessions, so today was a very welcome respite.

Another Good Day

Even though I didn't sleep much last night, I got up feeling pretty good again.  I went with Brad while he walked Budger.  I have a suspicion they usually walk farther on their own, but it was still nice and cool then, so it felt good.  A shower felt good too.  It's quite the process, taking a shower while making sure to keep the catheter area dry, but Glad Press n Seal has become my best friend.

This weekend has been Helldorado Days in Tombstone.  It's a celebration that has taken place in Tombstone since 1929.  It's the reason all the RV parks around here have been packed this weekend.  When we had our unexpected need for an extension staying here, it was initially a bit of a problem.  Our spot was already booked, because we were supposed to have left early last week.  We were going to have to move to a different spot for the weekend, and then another one after the weekend.  Through somebody's magic (and playing on people's sympathies, I'm thinking) the owners here came and told us last week we didn't have to move, this was our spot for as long as we needed to stay.  Almost made me cry.  We like this spot because it's farthest from the road, and we get a beautiful sunset out our back window every night, and it would just be a pain to close up everything and move maybe 50 feet, and then do it again in a couple of days.

Anyway, this morning was a parade, and that sounded like some fun entertainment that didn't require much energy.  Brad let me out on the parade street, and he parked and brought my folding chair.  It was a LONG parade, lasting an hour.  It was nice sitting out in the sun, and like most parades, there was plenty of candy tossed, and that's always fun seeing kids dashing to pick it up.  I even got a couple of tiny Skittles packages.  Brad took care of the Tootsie Rolls for me.  Afterwards, I felt like I could walk back to the truck, so I got in over a half mile today!

A few pics from the parade:

We came back home after the parade, had some lunch, and then I crashed on the couch for a long, hard nap, one of those that takes 15 minutes to completely wake up from.  Felt good!

We're meeting Bruce and Roberta in town for dinner at one of the fun local establishments.  It's been nice to have several good days strung together.  I have a feeling (actually, the doctor told me) that while taking the steroids is my best chance at getting things to work correctly again, they come with not-so-fun side effects, so I'm cherishing these good days while they last!

Counting the Joys

Today's joys:

A full night's sleep, no waking up

Feeling relatively normal after I got up

Being able to wear a real pair of shorts, not oversized stretchy, because of the fluid that's been removed

My ankles are almost visible again

Hair washed

Being able to make my own breakfast

Taking a 1/3 mile walk around the park

Sitting outside enjoying the sunshine while Brad plays his guitar

Being able to wear my wedding ring again, because the swelling in my hands is down

Mike and Ike's candy... why have I never had these before??

Enough energy to make dinner from my new cookbook... Asian Chicken Satay and Rice with Herb Pesto.

Brad having time to do his hobby instead of doing so much for me today.

Friends stopping through for a couple of days on their way to the Gulf.

It was a really, really good day, probably the best I've had since getting out of the hospital.  I think we did just the right amount of things without overdoing it.

Good days are good for the soul

Yesterday was an all-around good day.  I felt good, felt strong-ish.  It might have helped that dialysis was super early in the morning, and then we had the rest of the day to ourselves.

Brad was able to do a little fix-up project... switching out the bathroom light from the fluorescent-strobe light, to an LED one.  As the old lights burn out, he's been replacing them with LEDs. 

I felt good enough to set things out for sandwiches for lunch, and then later browsed through the new Renal Diet cookbook for something I could make for dinner.  I settled on something called Ground Beef and Rice Soup.  I actually had everything on the ingredient list, but decided to use macaroni noodles instead of rice, just because.  And I let it cook down to more of a goulash instead of a soup.  It was really good.  Today I might try out one of the "salsa" recipes they have in the cookbook.  I don't know about tomato-less salsa, but I'm willing to try.

Anyway, it felt good to finally be cooking something again, and I didn't wear myself out doing it.  A shower and hair washing session perked me up too.  We finished up the evening listening to the National League game, and just doing **stuff**.  Now if I could get myself to sleep more than a couple of hours at night!

Ooh, and I looked up Halloween candy that I can have, because that's very important.  As luck would have it, it's not only a really long list, but most of my favorite things.  I've always favored the sugary treats over the chocolate ones.  A trip to Walmart after dialysis may be in order!  After all, never know if there will be any kids in the park on Halloween, and we want to be ready!

I woke up this morning feeling pretty good, even though I'm still having trouble sleeping more than a couple of hours at a time.  I don't know what's up with that, but as long as I have 4 hours in a comfy recliner at dialysis, I can get a little caught up. 

I had my couple of eggs for breakfast (protein protein protein!) and my one cup of coffee, and got a load of laundry going... it's the little things. A 1/4 mile walk around half the RV park rounded out our morning.  We did the 1/4 mile in 15 minutes.  About 5 of that was a quick rest on the clubhouse porch.  I'm getting better!

Dialysis went well today too.  Well, kind of.  I was freezing the whole time, we got started an hour late, and I couldn't get anyone to get me a set of earphones for the tv.  But the dialysis part went well. They are still taking off quite a bit of fluid each time, but it's good that they are able to, especially right before the weekend when I won't be coming in.

It's nice to be able to string two pretty good days in a row.

Ups and Downs

A couple of up and down days... Yesterday I had an appointment with my kidney doctor.  We went over a lot of stuff... my fatigue, my rising blood pressure, my susceptibility to colds and viruses.  The fatigue will gradually lessen, although yesterday was a really rough day.  She's having me go to dialysis an extra day for a couple of weeks (4 days total) until we get the extra fluids under control.  I normally have extremely low blood pressure, but the dialysis can mess with that, so I'm on blood pressure meds for awhile.

The being susceptible to junk in the air part... I am supposed to be very cautious about being around large groups of people, use the hand sanitizer and wipes on the grocery carts, and cut down on pet hair and dust inside.  Brad has been so good about coming up with solutions to a lot of this.  He ordered an air purifier that arrived yesterday, Budger now gets a brushing after his walks before they come back inside, and I think he swept and mopped and dusted and wiped down every surface with disinfectant wipes while I was at dialysis this morning.  I'm not supposed to do any of the sweeping, and absolutely can't change the litter box.  Poor Brad, this was not part of the deal, but he's been amazing, and thinks of things before I do.  He did start doing the dishes when we moved into the RV a year ago, but that's something I can do (on my good days) that doesn't stir up any dust, so I may steal that job back, since he's had to take on so many of mine

I feel pretty good today.  We even went for a (very slow) walk a bit ago.  Yesterday I was miserable, and had another pity party moment.  From having to give myself a 10 minute pep talk to get off the couch yesterday, to being able to set out everything we needed for sandwiches for lunch today.   Ups and downs, that's how it's going to be, but I'll take feeling (relatively) good today!

I thought I'd share my new dialysis port location.  You can see my neck was pretty torn up from the old one.  I'm not sure what's under the bandaid, but there is a lump, and it hurt for the first couple of days.... good today, though.  I'm thinking it's a couple of stitches.  They probably told me at the hospital, but I've forgotten.  I think I'll peek under it tomorrow.

The second pic shows what the port looks like when I'm out and about.  A little lumpy (they always clean and wrap the tubes so well at the clinic... so much gauze!).  But I don't think it'll be attracting attention like the one hanging out of my neck!

First day at the dialysis clinic

We had a fairly "normal" weekend.  We had some plans for yesterday (Sunday), but I was feeling especially tired so we decided to stick close to home.  Brad and Sean did run up to the Boot Hill Cemetery so Sean could see that.  And we took a couple of walks around the park, with rest breaks halfway.  I even got Brad's hair cut.

 I talked with my kidney doc about the fatigue, and she said it's a combination of sitting in the hospital for 10 days, and the extra fluid I am retaining.  They pull extra fluids off at each dialysis (today was 4 liters!) and I am sticking to my 1500 ml of water throughout the day, so eventually we'll get caught up.  I already feel a bit better tonight after dialysis.

So this was my first time at the clinic.  I think I have the routine down.  You weigh yourself and print it off when you arrive, go back and find your big comfy recliner, check that it's your name on the filter attached to the machine, and sit down and let them get to work.  Each chair has its own tv, so I watched some House Hunters.  When I was all finished, I had to weigh myself again... it's amazing how much 4 liters of fluid weighs!

A super cool thing:  I was sitting in my recliner, and the receptionist lady came back and asked me my favorite color.  I told her red, of course.  About a half hour later, she came back with this amazing quilt!  For me!  She said there's a group in town that makes them for the patients at the clinic.  I was pretty blown away!

We finished up the evening with dinner at the Longhorn Saloon.  My kidney doctor said protein is the big thing for me... that I should eat the protein first, and then anything else if I am still hungry.  In fact, she said she didn't care if all I ate was protein!  So when I saw the special at the Longhorn was flat iron steak and shrimp, I figured that was good.  I got some cole slaw for a side dish, but I really focused on the steak and shrimp... such a sacrifice!

This is the cool stained glass mural on the wall in the Longhorn.

Tomorrow we get up early to head into Tucson to meet with a surgeon who hopefully will give me a new dialysis port that will be in a better location... somewhere below my collar bone.  Brad and I have gotten pretty good at my hair washing routine, but this should make things easier.  We'll also be dropping Sean off at the airport.  It's been so nice to have him here, and get his medical perspective on things.