Saturday, August 30, 2025

 Thursday morning started early as I had to be at the Infusion Center by 7:30 am.  Ben met me there but we learned that he wasn't able to be with me, so they sent him packing. I will definitely put a comment on their website to make it clear that support people are not allowed. They got me prepped, took my temp, put in the IV, did a saline flush, and started the infusion by 8:30 -  gradually increasing the dose until I was finished around 1:00 pm.  I had no side affects and felt just fine, was allowed to eat a snack and read, use iPad, and nap.  I was told that the next one should take a little less time.

When I got back home, I got a call from the Neurologist's nurse with an update on a prescription and she said that she could get my recommended EEG and MRI scheduled for me.  They just happened to have an appointment open that afternoon for the MRI, so I jumped on it and got that behind.  It was also convenient that an EEG appointment was available the next day and that is now behind me too.  I don't have any more appointments until my next infusion on the 10th of  September.  Woo Hoo!

I am now waiting for Tom's arrival - he should get here late afternoon, early evening and he plans to spend about a week. 

Thursday, August 28, 2025

 It is 6 am and I woke up early in anticipation of my first Truxima infusion today.  Back on Monday, I saw Dr Pati, a seizure specialist, for a second opinion on the infusion treatment recommended by my neurologist.  Ben joined me at the appointment and I was so impressed. He is professional and very knowledgeable, answering all of our questions and clearly explaining what is going on.  

The purpose of the infusions is to reduce the activity of my immune system, as it is overactive and attacking healthy cells.  With auto-immune disorders, your immune system does the opposite job that it is supposed to do and rather than keep your cells healthy, it destroys them and in my case, caused the seizures that badly damaged the right temporal lobe of my brain.  The good thing about that is that my right side is not my dominant side, so now the left side of my brain is doing all of the work and needs to be protected.  He also told me that this very rare type of auto-immune disease may affect 1-9 people out of 100,000 and I am at risk of having repeated seizures.   Needless to say, I am proceeding with the recommended infusion therapy, with monitoring with EEGs and MRIs to make sure it's working.  It was an emotional day, to say the least.

Bob and Penny arrived for a 3-day visit that evening and I had prepared a dinner of chicken pot pie, caprese salad, breadsticks and ice cream.  I always like to feed my visitors when then have spent a long day on the road.  Dinner was well received and I will definitely umake that recipe again. It sure was good seeing them and I so appreciate them coming for a visit. 

I had a dermatology appointment Tuesday morning, so I just stopped by their hotel and we went and walked the path that goes around Girard Lake Park and then to Shantytown Bar & Grill for walleye lunch. Their goals were to visit with me, to eat walleye, preferably at a restaurant near the water, and walk a path around a lake - things they don't get to do in KC. After our walk, I went home and they went back to their hotel for naps before heading over to Ben's for pizza and a visit with the family in the evening.

Wednesday was another fun and busy day, starting with a walk around Hyland Lake Park that was about 2 miles. I took Joey back home, took a little rest, then they picked me up and we went in search of a restaurant on the water that served walleye and ended up at Dangerfield's in Shakopee. We were all impressed with the restaurant and food, sat out on the screen covered deck overlooking the Minnesota River and had walleye again. 

After another little break, naps and rest, they picked me up and we headed to the  Midweek Market at the civic center to listen to music by the band 'Six to Midnight' for a while. Normally there is a good size farmers market on Wednesday night but that must be done for the season as there were only a few food trucks but nothing that really appealed to us. So guess what we did - we went and ate walleye at Willy McCoys.

We hugged and said our goodbyes and they head back home to KC today. 

Sunday, August 24, 2025

 I know it has been a busy week when I miss out on afternoon naps and that happened twice this week.  I'm not complaining as it has been a fun one.

I met up with my former neighbor (The Winslow Apts) and friend, Mavis,  at the Yankee Tavern.  We had a lot of catching up to do, as it has been a long time since we have seen each other. Various spent some time healing from a broken kneecap and I spent some time dealing with health issues too.  Maybe we are past that and can meet up more frequently now. Mary, another friend that we hung out with was unable to join us. 

Thursday was a chill kind of day, although I went to some garage sales in the morning and took Joey to the dog park for a run.  

Genevieve, the art teacher that comes to my community called to ask if I wanted to join her and a couple of other ladies for a beading class at her home on Friday. Of course, I  accepted as she is such a fun person to be around.  I met Barbara and Emily and the three of those ladies do this intricate bead weaving and I can't even come close to that kind of skill. I made a string of beads for each of my granddaughters that they can hang in their windows.    

Genevieve's home is gorgeous and she had a nice lunch set out and each of us brought something to share.  It was a fun afternoon.

I also had a nice conversation with Tom that afternoon and we talked a bit about his plans for a visit coming up around the 30th of August.  It will be nice to see him again - its been a while.

Ben called Saturday morning to see if I was available for a picnic at Minnewashta Park to celebrate Jill's 50th birthday that was on Wednesday. These things come about last minute because of the kid's schedules and also how Dennis is feeling that day.  We also celebrated Mike's birthday - it would be his 78th and Jill's brother Casey's - he would be 48. Casey passed away in 2011 at the age of 34 from a brain tumor.  It was the first cool day that we have had most of the summer and we were all bundled up in hoodies and blankets, but it was nice to hang out with family.         

Tuesday, August 19, 2025

Happy 56th Birthday to my oldest son, Pat, today.  Dang, it is hard to imagine that he could be that age already - it seems like yesterday when I held that little 5 pound, 11 ounce boy in my arms for the first time.  I am fortunate that both of my boys grew up to be good people and I am proud of who they are.

Looks like I have several visitors coming in the near future - Bob & Penny on the 25th of this month for 3 days, Tom on the 29th for a week or so, and Carol and Richard on the 19th of September for a couple of days.  Yay!  And then I hope that I am ready to make a trip to Stoughton the end of September for Roger's big 80th birthday party.

Cathy's friends, Sandy and Tillie stopped by to see her this week and she invited me for coffee and pastries.  We had some great conversation and Cathy brought up a couple of events that I had gone to with her - Christmas at Heidi's house, and a picnic at Karen's house.  I had absolutely no memory of either event, so she sent me photos - and yes, I had been to both.  Just an example of the damage the damned seizures did to my brain.  Guess I had better keep up with the exercises that the Occupational Therapist gave me.

Speaking of OT, I am doing one of them right now - typing.  Ben gave me a bluetooth keyboard and it is so much easier than typing on my iPad.

Another side effect of the Prednisone and seizure medications is weight gain and I have put on 5 pounds since I got out of the hospital and that has to stop.  This week, I am committed to not snacking between meals, tracking my calories and staying under the daily allowance - I eat mostly healthy food but way too much of everything.  I also need to get plenty of exercise.  I started with a 40-minute Silver Sneakers workout yesterday that I plan to do every other day and will extend my morning walks a little bit each day.  Hopefully, this plan will get me back on track.

This picture of me and my Mom and I showed up on Facebook today - I probably had posted it in the past. I think we look a lot alike - eyes, cheeks, mouth.  I think it was taken when we lived on Lake Kegonsa (it appears to be a lake in the background) across from the golf course.  I remember one time Rocco and I got spanked because Mom caught us at the golf course collecting golf balls and we were forbidden to go there.

I went over to Tom and  Sue's house tonight and hung out with Sue on the patio while Joey made Tom happy by being willing to sit on his lap and be loved.  Sue and I were watched for hummingbirds as she said she had  been seeing a few around.  A female came up and hovered on the flowers next to me, so I slowly stood up and she moved right in front of my face and was facing me about a foot away from my nose and then she flew off.  How exciting is that!  We hoped that she would come back but I guess she had enough of me.

Thursday, August 14, 2025

 My big, sad news today is that my brother-in-law Mike Moore passed away this afternoon.  Rene, his twin daughters Angie and Kristin, Randy and a couple of friends were there with them.  He had been suffering from COPD for years and recently was needing oxygen and was restricted to a recliner and the dining room table.  

They all gathered at the boat dock (a favorite hangout) and had a 'watch the sunset' memorial for him last night.  Both Michael Owen Bridge and Michael Owen Moore died from the same disease and on the 13th of the month - kind of a coincidence.

I don't know what arrangements are being made or even if there will be some type of funeral service, but I sure would like to be there for Rene.

I took Joey to the dog park on Tuesday morning and we were way up on top of the hill when a guy and his little dachsund came in. That little dog name Chica game running toward us at high speed and the two ran and played for the next half-hour. That's what I hope for when I go there. Joey slept for about three hours after that.

Today was busy - starting with a Silver Sneakers workout - my first.  I had a hard time following the dance moves but will keep trying as it seems kind of fun.  I really need to work at taking off a few pounds that I have gained from the danged Prednisone and seizure meds and my awful eating habits. I am hungry all of the time and have not been making good choices - pizza, bread, and just too much and too often.  

I had a nice facetime call with Jim Bucko, a trip to Costco to have my tires rotated, I then got the news about Mike and was texting back and forth with siblings.  

I also had a phone conversation with my long-lost brother, Russell, the youngest - to give him the news.  His choices in life have not been good and he lives a miserable homeless life in Madison.  It has been a long time since we talked and he cried, misses family, and said his life sucks but blames nobody but himself.  He described the shelter as 300 beds packed into a large building with filthy bathrooms and the noise of that many people in the same situation as him.  My parting words, just before he ran out of minutes was that I loved him and he could choose to take the drastic route and go to detox and rehab - probably the only way he will ever find a home.

I also had a very nice, long conversation with Tom.  Its been a while so we had lots to talk about - mostly updates on my danged health issues. We agreed that it would be nice to see each other again and will try to come up with a plan to make that work.

Sunday, August 10, 2025

 I took Joey to the dog  park on Tuesday afternoon and there was only one other dog there and it wasn't too interested in playing, although they did run around a bit.  I think it is good for him to get out and be around other dogs - he is becoming much more playful with me at home, getting a toy when he feels like playing and he is really good at fetching the ball, as long as there are some treats involved.

I helped out with food shelf on Wednesday morning but had to leave early for an Occupational Therapy assessment with Meghan.  We talked about my concerns and she did an assessment on my driving risk and found that to be of low risk.  I do need to work on the brain to nerve connectings and the shakiness, so she gave me several suggesstions for apps and websites with exercises for that.  I have found some of them to be very challenging.

I had my second and final Hepatitis B vaccine on Thursday and have no other prep for my infusion on the 28th.  I do have an appointment with a seizure specialist on the 25th for a 2nd opinion to make sure that is the right route to take.

I spent the afternoon with Ben yesterday and Jill and the girls were gone for a couple of hours doing back to school shopping.  We had a lovely dinner - Ben smoked a turkey breast that turned out to be tender and very flavorful, he roasted potatoes, and I made Garlic Butter Green Beans that were a huge hit with everyone.  I will definitely make that recipe again.

Monday, August 5, 2025

 Happy Birthday to my nephew Ryan yesterday and to my BFF Patty today!  

Leslie invited me to go to the Farmer’s Market on Saturday morning and I stocked up on potatoes, sweet corn, tomatoes, Shitake mushrooms, cukes and onions - always yummy stuff.

Joey got his first professional haircut yesterday and the groomer said he was a challenge. I knew that would be the case, because it has been a challenge for me and he hates to have his feet messed with, but thought with her experience that it might be easier.  I’m not sure if I will do that again or if regular visits might just become easier for him to tolerate.  

I had very nice surprise when I got a call from Patty on Sunday night saying they would be in my area on Monday and we could meet up if I was available.  It turns out that the only thing that I had going on was Joey’s grooming.  They showed up at my house about 10:30 and he was done at 11:30. We picked him up and he and their new dog, Chloe were immediately in attack mode, so we headed to the dog park. They ran and played and were the best of friends after that.  We had a very nice visit, we all took short naps, then walked to Willy McCoy’s for a late lunch, early dinner.  They were headed to St. Cloud and left after dinner. What a nice way to spend the day!