Thursday, August 31, 2023
What We Read in August
Tuesday, August 29, 2023
RA-iversary
This month, I recognized 10 years since my Rheumatoid Arthritis (RA) diagnosis. It's obviously not a cause for celebration and is more of a marking of what all my body had been through and all I've learned over the last 10 years. For those newer to my blog, I found out I had RA in August 2013 when I was living in Charlotte (I was relocated for my job). I had been diagnosed with stress fractures that spring shortly after I relocated to Charlotte and then the pain kept extending to different areas of my body and it became more intense. I was in a walking boot for a stress fracture on one leg and then 3 months later, had pain in the other leg and the podiatrist thought I had a stress fracture in the other leg. I knew something wasn't right and had been to the doctor multiple times that summer. I sort of wrote the pain off as "getting older." But my parents were kind of alarmed when I stayed at their lake home in early August and needed my dad to carry my (small) carry-on suitcase upstairs. I wasn't physically able to do that which is odd for a healthy 32 year old woman.
A blood panel and physical examination showed that I had RA. I happened to be in NYC visiting a friend when my primary care doctor called to tell me that my blood work showed that I likely had rheumatoid arthritis. I can still envision myself walking around Washington Square Park, crying, and trying to make sense of it all. It was probably best that I was visiting a friend that weekend because she was so kind and supportive. Otherwise I would have been alone in my apartment in Charlotte which was so not my happy place (long time readers will recall that my time in Charlotte was a very challenging time in my life).
The last 10 years have been quite the journey. There have been times when my disease was well managed. In fact, when I moved to Minneapolis and established care with a new Rheumatologist, he commented that he wasn't sure that I actually had RA! Eventually I got a flare so it was evident I had it but I wanted to say - have you not looked at my medical records that were sent from Charlotte? I eventually changed doctors and found an amazing female rheumatologist. This spring I told her about my doubtful previous doctor and his doubt about my diagnosis and she was FLOORED by that encounter.
There have been times when my disease was not well-managed. Like during my pregnancies. I got so many steroid injections during my pregnancy with Paul that the PA drew a picture of my hands and would mark off where we had done an injection so I could keep track of when I might be able to get another injection (you need to wait at least 6 weeks before injecting a joint again). My pregnancy with Taco was so different as it all occurred during the pandemic when only essential staff was in clinic. So I was only able to get 2 steroid injections and had to get by with high doses of oral steroids otherwise. I had flares so many places - my hands, elbows, hips, knees, and even my jaw!
My disease went back to not so well managed last fall but I think/hope we are getting back to a well managed point. It's required maxing out my dose to methotrexate (MTX), which is a chemotherapy drug, but I've tolerated it well overall. I switched over to an injectable form of the drug this week which means I have an injection weekly and every other week I have 2 injections - MTX and my super expensive Humira. I'm hopeful we can drop some of the other medications I'm on right now once we're sure the MTX is working so we can decrease my pill burden. I currently take 9 pills/day, split between morning and night, for my RA. It's a lot and every time I fill my days-of-the-week pillbox (with am and pm slots) I feel like such a senior citizen! No shade on senior citizens - it's just that it's not ideal to have so dang many pills to manage.
When I was at my parents' lake home at the end of July, I had coffee with my cousin who is like a sister. She asked about my RA and shared a story about a time I shared a hotel room with her when I was home in the summer of 2013. It must have been the same trip that I stayed with my parents at their lake home. She said she vividly remembered that I could not open the door of the hotel room - the reason I couldn't open it is because I could not grasp anything since I had flares in my fingers and I didn't have the strength to pull the door open because of flares in my elbows. She said she was so terrified that something terrible was wrong with me. So I guess I am glad that my health issue was figureoutable and treatable and hasn't had long lasting effects. The amazing array of drug options have prevented permanent joint disfigurement.
So I recognize this diagnosis anniversary with mixed emotions. On one hand, I am lucky to be as healthy and active as I am. But on the other hand, I'll always have to take my RA into consideration. That means prioritizing sleep and listening to my body when I am tired. That is something we all should do but if I don't, I will pay for it. I'm not operating on a level playing field for my peer group and I have to frequently remind myself of that when I'm overtired or getting a flare. I just hope and pray neither of my kids end up with this, or a different autoimmune disease, but time will tell.
Monday, August 28, 2023
Weekend recap + ready for a routine
Another weekend is in the books. We are in the ‘in between’ time now. Paul’s summer public school program ended last Wednesday and he starts Kindergarten on Thursday, Sept 7th (K starts 2 days after everyone else to give them a shorter week). We are all ready for this period to be over and to get back into a routine!! We are piecing together care for the 2 week gap between the summer program ending and school starting. Like me, Paul thrives on a routine, so it’s been a bit of a tough stretch already. Luckily my parents are watching him this week which is a HUGE help.
Paul was home with me on Thursday and Friday. Friday was a quieter day at work and Phil was home, too, so it was more manageable. I knew it would likely be a quiet day so I got us tickets to the dolphin show at the zoo. Our zoo is taking care of dolphins from a zoo in IL during a renovation of their home habitat so they won’t be here much longer. The show wasn’t as quite as good as when we went with Kyria in February but it was still fun! Dolphins are sooo cute! I was planning to head out and get back to work after the show but it was quiet at work and Paul really wanted to see some animals so we did a loop of the zoo + a carousel ride. It was not a pleasant experience leaving the zoo as Paul got pretty overheated yet didn’t want to go home…
Saying hi to our penguin friends! |
My parents have SO much beach due to back-to-back droughts. They usually have 1/3 this much beach. |
Are you doing anything for Labor Day weekend? We usually don’t come up to the lake since the holiday often falls during Phil’s busy time at work and traffic to/from Minneapolis is TERRIBLE. But we will suffer through traffic to see lots of family and meet my new niece! Fingers crossed Taco does well on the drives! He’s the wild card.
Wednesday, August 23, 2023
Kid Activities + Complicated Feelings About Sports
Sunday, August 20, 2023
Weekend recap
Ear procedure side-by-side: Paul at 9 months v Paul at 5.5 years! |
You soak the eggs in water and then chip away the material to find the dinosaur. |
He looks a bit guilty after emptying one truck into another. |
The birthday boy who turned 42, not 3! |
Friday, August 18, 2023
5 Things Friday
It's Friday but a weird Friday since Paul has his procedure today to remove his ear tubes - which is basically a very expensive ear cleaning. Send me all the good vibes. Paul has decided he does not want to be "put to sleep" (even though I've explained it's just a brief snooze and will be over before he knows it) so I fear it's going to be a rough morning. The surgery is at our Children's Hospital so surely they are good with, um, patients with strong emotions/feelings. We have to be at the hospital at 6:15am so I'm hoping for a nap later today! Will only has a half day so I kept him home for the day and my mom's watching him this morning. Here's 5 things on my mind today.
1. I feel like I've found my groove in terms of a workout plan. I run on Saturday and Sunday and do strength training workouts on Mondays and Fridays when I work from home. I was trying different things for my strength training workouts but have settled into the Caroline Girvan Epic Heat program. There are "30 minute" workouts but really they are about 36-37 minutes with explanations at the start and the cool down. I really like them! I find myself dripping with sweat at the end of the workout, especially lower body ones! I see there are some HIIT workouts in the program so I may skip those since I'm getting my cardio from running but we'll see. Since I can only do 2/week, it's going to take me 5-6 months to get through the program but so be it. I just don't have the motivation and energy to get up at like 5 to workout before work and nighttime workouts amp me up so much and make it hard to fall asleep. But 4 workouts/week seems reasonable for a working mom with 2 young kids. I think.
So. Much. Sweat. |
2. I used to be terrible at setting boundaries but that is one thing I worked on when I was in therapy in 2020 - because the pandemic was a CRASH COURSE in setting boundaries and I was not prepared. It is still not easy for me to set boundaries (and not feel guilty about setting those boundaries) but work seems to give me plenty of opportunities to practice. Would you believe I received 3 requests to travel during the first week of September? My new hire starts on Tuesday of that week, we don't really have child care for Paul on Tuesday and Wednesday of that week (my MIL will watch him during the day but we will try to not make those days super long for her since she is 80), and Paul starts Kindergarten on Thursday. People were mostly understanding when I explained that my son starts K that week. That is back-to-school week for most schools in Minnesota but I suppose for much of the country, their kids have been back in school for weeks so September 7th is just an ordinary Thursday. NOT FOR US!
Crappy bathroom selfie! |
Monday, August 14, 2023
Back to normal
I had Friday off so had a very gentle return to normalcy. I came back from my trip really invigorated and refreshed so I decided to use a chunk of Friday to go through things I had set aside to donate to goodwill. It felt so good to get rid of things! We passed on a big box of clothes to some other families at daycare, too. We have benefited from a lot of hand me downs so it is nice to pay it forward! A big storm moved through on Friday night - we all marveled at the beautiful rainbow that came after the storm!
Saturday morning was my usual routine of my run, followed by the library and gymnastics. When I was talking about my weekends with my friend Amber, she commented on how much of a weekend routine we have. I can’t imagine it any other way, though! As I’ve mentioned before, we do divide and conquer quite a bit but we are out of the house 10 or more hours/day when we are in the office so that requires us to kind of time block/divide and conquer during our weekend to get the stuff of life done. And, for me, it’s easier to divide and conquer when we have some set plans for part of the weekend day.
On Saturday afternoon, we had my annual lake get together with my college friends. My friend’s FIL lives on a lake in the area (Lake Minnetonka) and he graciously hosts all of our families each summer! There was a lake and sand toys and such but my boys were most interested in rolling down the hill and blowing bubbles for my friend’s dog and then running away as he tried to eat the bubbles. They thought this was HILARIOUS. But I was happy to see that my kids are warming up to dogs. They used to be terrified of dogs but have really made progress on getting comfortable around dogs!
All that fresh air meant the boys slept in until almost 7 on Sunday!!! I slept until 6:50 which felt so good! I enjoyed some cooler temps on my run that morning.
It was a beautiful, calm morning! |
Then Paul and I hit up Target for school supplies which I was WAY MORE excited about. But he did enjoy the one-on-one time! He just doesn’t quite understand the allure of new pencils and such. He did get excited to pick out a pencil box, though.
Then it was off to a lunch-time party for a friend in the neighborhood who was turning 5. Paul enjoyed the bounce house and Taco enjoyed the snacks. He did not enjoy having his picture taken!
So. Much. Sass. |
And wonder of wonders, Taco took a 2+ hour nap when we got home! I napped, too. I didn’t sleep all that well on vacation so my body must be catching up.
It rained on and off for the rest of the day so we laid low. I made picadillo for dinner and assembled some Greek ground turkey burgers that we will grill tonight.
We have a bit of a weird week coming up. Phil leaves for his guys golf trip on Thursday and Paul has a minor surgery to remove his ear tubes which have been in for almost 5 years - it’s basically an ear cleaning while he is gently put under. He would not tolerate the ENT NP using tweezers to get them out of his ears (they are stuck in a bunch of wax in his ear canal). It’s not ideal to go into the OR but so it goes! They have to come out or they will start causing problems. It was the only date that would work for us this month so my mom is coming on Thursday so she can watch Taco on Friday when we are at Paul’s procedure. Friday is also Phil’s birthday! We will belatedly celebrate when he is back. I know he is excited for some golf and time with his college friends!
Speaking of birthdays, today is my mom’s 75th!! Happy birthday to my mom! I really hope I look this good at 75!!
I probably have more gray hair at age 42 than my mom does at 75!! Oh to be a blond - they seem to age extra well! |
How was your weekend?
Friday, August 11, 2023
Lake Louise + Canmore: days 4 + 5
The views were stunning! There is another gorgeous Fairmount hotel that faces this view - I think I might prefer this one over the Banff one since there is so much hiking steps from the hotel! |
Mirror lake actually looks better in photos than in person. After seeing Lake Louise, it looked like a pond but the reflections off the lake were beautiful - hence the name Mirror Lake! |
You can see the Fairmount on the left side of this photo. Our parking lot was just behind it so it gives you perspective on how far we had hiked! |
Three sisters reflection |
Wearing my new Banff sweatshirt. It was a chilly morning! |
Thursday, August 10, 2023
Banff: Day 3
Amber caught some photos of me on my bike! |
Biking into Banff! |
Heading back to Canmore |