Ethan’s Journey

 I found it difficult to concentrate today. I have all these ideas, thoughts and worries. I am worried I am missing something. I don’t trust this nephrologist completely. I am feeling like there is something I am missing and am unsettled. There is just so much to juggle with Ethan. We have an appointment next week with the seizure/stroke neurologist and Ethan’s therapist. I do feel the need to research different rejection medications, however the heart team is rock solid and I trust their recommendations. I did ask about switching nephrologists, which we still may consider. I don’t love doing that in the middle of testing as it will delay EVERYTHING!  I feel angry that I have to take on learning all this extra stuff because I shouldn’t have to. I have an overwhelming sense of responsibility to steer this kid in the best direction. I know Ethan’s food preferences, so I tried to come up with flavor blends that he may enjoy, but don’t have a lot of the bad stuff. Rice is going to...

 This is what my stress management looks like. I am controlling what I can control. I woke up thinking about today’s appointments. Immediately I needed to deep clean the couch. I needed to vacuum the cushions, shampoo them, vacuum under them and set up a drying system with a series of fans. I must be efficient! I felt the need to do it quickly and efficiently even though that really doesn’t matter. I wanted to make sure I timed the laundry appropriately so there was no dead time in between loads. Even though it didn’t matter. This is how my anxiety rears its ugly head. The first appointment was hilarious. Ethan used the kiosk to check himself in. We had already checked in on the app. It was asking him about his pain level, ability to do things, exercise, mood etc. The annoyance remarks he was making were top notch, professional level! There was heavy sighing, lots of under the breath swearing and it took him about 10 minutes. I told him to answer the questions the best he could. On...

 I brushed up on my chronic kidney disease reading. I jotted down ideas and questions I would like to discuss at Ethan’s appointment tomorrow. I will pick Ethan up at his job tomorrow and take him to his appointments. Paul failed well today. He said he had very minimal pain from his cavities. Yay! Today I had to call National Grid. I wanted to add Paul to the bill because he gets the notifications about our service (I don’t) but can’t talk to anyone about our service. I had to go through several people before getting to the correct department. It took about a half hour. I had to state my name and account number multiple times. It felt like I was trying to get to top clearance security information for the government. Nope, just National Grid! If the was the worst of my day, I did well!

 Back to the grind. I had a busy day after being away for a few days.  Back to back meetings all day long. My brain was scrambled. Paul had THREE cavities filled today. Ouch! He failed to let me know about the appointment. When he casually mentioned it, I asked what his plan was to pay for it. I scrambled to get him added to our care credit account. Ugh! Poor planning! I don’t love that! I tried to convince Paul that his cavities are due to drinking wine. I teased him that his dentist was going to tell him to stop drinking wine, to which he responded “I am not going to do that!”  It was worth trying to mess with him! My little shadow, Jiminy, clung to my side. He followed me any time I moved. He was so tired this evening from his activity. But not too tired to be cute!

 Happy Birthday Nana! We celebrate Nana’s birthday this Wednesday at the steakhouse. I was exhausted this morning. I woke up after 8:00 am. This is almost unheard of for me. Avery left her wallet at home and asked if I could bring it to her. Of course I said yes. The delivery will include hugs and smiles. Paul and I went out to breakfast with some friends. It was a nice breakfast with great company. I cleared my entire plate it was so good. 🐷🐽 Paul then left to go snowmobiling with his buddy for the rest of the day. Ethan had a friend over. He and the friend took turns riding the other snowmobile around the field and towing each other on the sled. They were acting like teenage boys. After breakfast, I took Avery her wallet. I parked illegally so I could just run in and give her the wallet and a quick hug. Avery has been quite busy at school. I text her here and there just to let her know she is on my mind. I like to get a feel for how she is juggling things and her anxiety. ...

  I must have been tired. I woke up at 5:00 but didn’t want to stay awake. I ended up closing my eyes “just for a minute” and woke up at 7:30.     I needed that! I did some work and got myself ready for the last day of the conference. My coworker called in a panic. Her mom went into the hospital and she felt torn. She wanted to be with her mom, but felt horrible for leaving me alone. I am very capable of handling things by myself and strongly urged her to leave. She felt so guilty. It really was not a big deal.  I ran into a girl that works at a clinic my friend, Patti, works at. (I told her to say “hi” to you Patti). Such a small world. I met some veterinary technician teachers that were interested in me presenting to their class about how to build their resume. I enjoy doing that presentation to students specifically. I like to show them terrible résumé’s. The worst of the worst. I try and make it funny, but informational. I packed up our booth and headed to the ai...

 This morning we made it to the convention center with plenty of time to spare. I even ran into a few people I used to work with and chatted with them for a bit. Small world. The exhibit hall was quite chilly again today. The bathrooms were basically kept at tundra type temperatures. I did not dilly dally in there. We had some good chats sharing what we can offer and getting information to help support our fellow vet people in their different stages of their career. I did offer my dogs up for research on a dental product that is being developed by a chemist. I offered free feedback on client perspective of ease of use, palatability and reporting back results seen. We will see how that goes. He was working on a product that incorporates hyaluronic acid into a water additive to help heal things like gingivitis For dinner my coworker and I went to a tavern. The food was yummy and priced well. It was quite loud. I felt like an old lady complaining about the volume of the music. It did ...

 My coworker and I showered up early to our booth this morning to see of more of our things came. We walked, it was SO COLD out. It was a 0.2 mile walk. I decided that I am going to Uber moving forward. This chilliness is ridiculous! I checked in with the guest services to see if our pamphlets and flyers arrived. They were able to find the boxes, supposedly on a truck on its way. We got down to the witching hour with less than 1 hour until “go” time. I went to the business center to see about making our own copies of flyers. Our boxes came with less than a half hour to go u til our start time. We scrambled to set things up. We had some decent traffic with good conversations. The conference hall was VERY chilly. The bathrooms felt like the tundra. The chilliness was exhausting. After the conference, I went to dinner with a previous coworker and a few other gals. We ate at a Mexican place. Margarita? Yes please! When I got back to my room, I put on pj’s and snuggled under the covers....

  I got to the airport early this morning. The lines were long. Lots of people vacating Rochester.   The TSA process went smooth. No issues. I boarded the plane and then sat and sat and sat. There were only a “few” de-icing trucks.    With several planes taking off, and frigid temperatures, it seems logical to only have a “few” de-icing trucks right? * sarcasm* As a passenger that knows very little about the airline industry, I also don’t understand the boarding process. To me, it seems like it would be more efficient to board the back of the plane first. But who do you inquire to find out the reason? On my second portion of the flight I had a window seat. When the girl next to me sat down, I was engulfed in a cloud of onion, bacteria and filth smell. Oh god! I have to sit next to THIS for the next hour and change?🤮 I practiced mouth breathing, but it is not natural to me. I leaned away as far as possible but this smell was dancing around me like pig pen’s dust clou...

 It was a chilly morning going to physical therapy. Paul worked from home again today and had to plow the driveway multiple times. Our neighbor helped us with his snowblower, as our piles are becoming quite high. Our 4 wheeler with the plow is running out of places to put the snow. We are so thankful that our neighbor was helping us. I love that we have them. We have helped them out as well in the past. I enjoy that sense of community. These same neighbors are across the street from us. My desk faces their house and I see them come and go daily. Today a strange truck was in their driveway. The truck backed in and the driver sat in the vehicle for about 20 minutes. I realized I have officially taken over as the mayor of our small neighborhood. I am the daytime neighborhood watch system. Avery always makes fun of me because I am aware of their schedules. I have even texted the neighbor to let them know their dog pooped in the driveway near their car and to avoid stepping in it. ...

Last night I was chuckling to myself. I found this odd picture.  I sent it out to a few people. I then followed it up with “opps, sorry, that was meant for someone else!” I did this just to see what kind of reaction I would get. I come up with things like this when I am bored. Try it! It is hysterical! I was laughing hysterically at the reactions I received. I actually was having trouble NOT laughing. I was cracking up so hard, in my bedroom, in the dark.  Most responses were based in confusion, “who were you sending it to?” Type questions. “What is the story behind this?” Questions. I sent the image to Paul. I was sitting on the couch with him as he opened the image.  Paul: “what the heck?” He said as he opened the picture. Me: very casually…” opps I meant to send that to someone else.” Paul “oh.” And then sets his phone down. I watched as he didn’t even have one follow up question. There was no curiosity behind the picture. Nothing. Me: “That’s it? No further questions?...

 During these winter storms I like to stay indoors and fantasize about tropical destinations. I spoke to a good friend this morning who is planning a Scandinavian trip for us.  I was also thinking about our upcoming trip to St. Lucia. 60 days away. But who is counting? (ME! I am counting!) Recently I have been thinking about next spring. With some encouragement from our travel buddies, we have officially started the planning for destination Spring 2026. My cousin gave me the nudge today and we decided to book the housing. That is stage one of the planning. I found a cool place with a short walk to the beach and a pool which checks out “wants” boxes. Fun fact, if you are getting an Airbnb, check prices on VRBO as well. I saved us $200 on VRBO for the SAME location! This trip’s destination will check off my 6 year desire to swim with pigs. I know they will poop in the ocean. Other things poop in the ocean too. I am not going to be drinking the water (on purpose). I discovered sw...

 Ahhhhhh Saturday! I decided to be productive today. I am feeling better and my back is somewhat cooperating!  The dogs have been neglected the past few weeks with me being out of town, arriving home but preoccupied with other things, then feeling crappy.  I like to bathe my dogs once a week. I know this is excessive. It is the curse of my power nose. I clip nails, dremel nails, bathe, change bedding etc.  Paul left early this morning and was going to be gone all day and evening. I had the day to myself. I felt up to shampooing the rug too. Why not get everything clean and smelling good.  As the day went on, I accomplished far more than I thought. My back was still feeling pretty decent. I made sure I stopped to rest. I did my stretches throughout the day.  I took Moe out while I did my walking. He was running all over like a crazy man! I was throwing snowballs for him to catch and eat! He was zooming around the yard. He tucked his butt and ran. The house w...

 Happy Valentines Day!  Today I had physical therapy at 7am. It went well. I like going so early because it is less people-y. Then I left to go help Avery sign the paperwork on her apartment. That was fun. We got a tour of her apartment. It is in a new building. No one will have lived in the apartment prior to her. The building smelled so new. She will have a laundry facility on her floor that she will share with 3 other apartments.  She is excited there is a dishwasher AND a garbage disposal. It was fun to watch. I am excited for her. There is a cute balcony off the kitchen that is accessed through a sliding glass door. This offers a ton of natural light in their living space and a private outdoor area. She read every single word on that lease and asked lots of questions. She did great! Later in the day I picked up groceries to avoid the weather this weekend.  And people. Ha! I don’t want the flu before my work trip. For our Valentine’s Day dinner, I made meatloaf w...

 We have an appointment with Ethan’s nephrologist to address the kidney values that are dropping. Ethan is 25 points away from needing dialysis. He is frustrated. I am frustrated. He has some time bit who knows how much? He has an appointment at the end of February. He is beginning to feel the stress of potentially needing another kidney. I know it is heavy on his mind as he is verbalizing his fears. I share his fears. I have been quietly carrying the burden of those fears for the both of us.  Coping skills are nice. I do allow myself to disengage from the fear at times but it is always there. I can also be distracted from it. I stay occupied with other things. Disengagement and distraction is probably not the textbook way to cope, but it gives me a break. At least it isn’t drinking or drugs. I have that in my favor. Of course, at some point Ethan will likely need dialysis again. It may be a little harder to do at home with no access port. We are starting to prepare for that a...

I woke up this morning with almost no pain. I am happy about that, but I still had to go get the CT scan. If I skipped it and things got worse again, I would be in big trouble.  I went in for my CT scan. I had to drink 1 cup of this yucky fluid every 10 minutes 5 times. All I could think of when drinking it, was that it was the consistency of thin dog saliva. I had to put the straw in the back of my mouth to try and bypass the gnarly taste and texture. Who is the quality control on this? Can you infuse it with something pleasant? I went in to lay on the machine. There was a male and female nurse. The female asked me to pull my pants down a little to make sure they were out of the shot. She was very careful to make sure I felt ok doing this in front of the man. She held up a blanket so “no one can see”. She was very much concerned with me feeling covered. I really don’t give a hoot.  With the amount of times I have mooned people, really not a concern. I was appreciative of her ...

I woke up slightly better than yesterday but still a little crampy. I decided I could rally and go to physical therapy this morning. With the lack of food intake and the belly pain, I wasn’t sure if I could get through it. I had to rest a few times because I felt shaky like I was going to pass out, but I made it. Yay! No incidents happened on my account. I was cheering the lady on next to me. She was doing partial planks. I remember the nasty mess planks have caused me in the past. She was suffering through it! I was laying on a table next to her with an ice blanket type thing on my back. I had a busy work day. After work I felt like there were 20 things that I probably forgot to do.) I ate about 10 crackers throughout the day and some cottage cheese. I know you are jealous. The good news is that I saved our family a ton on groceries this week! I felt good enough to do some light cleaning. After 40 minutes or so, I laid on the cough the rest of the day.  I am heading to bed early a...

 I woke up several times in the night, but more from back pain than belly pain. The belly pain was still there, but the back HATED resting yesterday. I gingerly got up this morning and did my back exercises. The belly pain was at least tolerable. I reached out to my GI doctor and asked if I should be going to them or the ER. I knew I needed imaging. The ER would get me imaging faster but it seems very germ-y. This sweet angel woman from the office asked me if I felt sick enough to go to the ER. I told her I didn’t feel sick, I felt pain. She said, “let’s get some imaging” and promptly put the orders in. A lady called me a while later and said she set me up a CT scan in Brockport on Wednesday! SCORE! I could have kissed this woman for saving me the time, exposure to illness that I didn’t need, and putting a rush on things. Until then I can manage. I am not a stranger to pain. Luckily it was less than yesterday. I was able to stand most of the day at my standing desk. I was able to d...

 Last night my abdomen started to ache. It was sore to the touch and if I moved at all I was in pain. I had excessive cramping that were HORRIBLE. It did NOT feel good. The pain radiated throughout my lower abdomen. Throughout the night I woke up several times with my sore to touch belly. I couldn’t figure out what could be causing it. I assessed everything I had eaten, went through different scenario’s of what could be wrong, and started fasting. I woke up this morning just as sore and this belly issue was handicapping me. I took a few naps. No fever. I was worried I was going to have to go to the ER. Paul went out snowmobiling with friends. Ethan made sure he kept the fire going to keep me warm. I drank as much water as I could to stay hydrated. This afternoon, my belly started to feel a little better. Not 100% but less sore. I had a little broth and a few crackers to see how that sits. We turned on the Super Bowl to watch the commercials and I guess the game. I kept falling asle...

 I ran errands this morning. Errands are so boring and tiring but so necessary. I am terrified to go in Public because I don’t want the illness. We celebrated Ethan’s birthday tonight. He wanted take out. It’s less people-y. Who does he sound like? Things are moving along for Avery’s apartment. I got some papers signed by a notary today. Thank you Diane! Paul did a 5-ish hour snowmobile ride. He had a blast. He took off from our house and he said he rode 120 miles. This evening we watched the game show channel from the 1970’s. It’s suck a blast. There is so much inappropriate touching that went on back then. Lots of kissing.

 I am so glad it is Friday! This week has been long. My brain just wants a break. Avery called. She is feeling a little bit better. We had to do some paperwork for the apartment that she wants to rent. Since I am co-signing, I had to provide paperwork, pay stubs etc. We received word that we need to go next week to sign the paperwork and make it official. Avery is so excited! She is doing adult things and I am proud of her. After work, Paul and I attended calling hours for an old friend. We barely made it in time because Paul got home late from work. We made it home and I spent the rest of the evening snuggling with Jiminy on the couch to stay warm. He excels at snuggling.

 Today was another tornado of a day. Avery called and is sick. She is achey, has a headache, is extremely fatigued….it seems to be going around. Poor thing. Ethan is feeling better and Paul is feeling better. Ethan’s nasty cough is hanging on though. Avery called for help filling out apartment paperwork. She needed a co-signer on her apartment. We chatted about taxes and how there is so much in taxes taken out of our paychecks. She also needed her school bill paid, so we took care of that too. I was able to make a kidney appointment as well as a hematology appointment for Ethan.  I finished up work a little before 5 and immediately rushed off to Brockport for Ethan’s MRI. The MRI is of a benign adenoma (growth) on his pituitary gland. His neurologist wants to make sure it isn’t growing. He had to answer YES to a lot of the check in questions, so it took a little bit to explain the answers and make sure he would not be injured with the MRI magnets. They told us about this rare ...