One step forward and two steps back

....the line dance I never wanted to learn...

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I am sorry if anyone was confused or concerned by my most recent social post/s - "I am still here working hard to thrive while I survive". I literally meant that I am STILL HERE. When I was diagnosed with the MRSA infection on my aortic graft and my pseudo-aneurysm in August 2025, the doctors were not sure how successful the antibiotics would be at suppressing the infection. They weren't even sure I would be around for my son's graduation (which is May 3). But I am STILL HERE and doing my best to thrive. I am home. I have lots of doctor/specialist appointments and have to go to the infusion center for an antibiotic infusion every ten days. My social post was intended to invite you all to follow me on Instagram (atypicalaorta) and to remind everyone that the blog can be accessed at any time (atypicalaorta.com) - because I appreciate you all joining me on my journey. And this is the easiest way to keep everyone updated on what is going on with my journey and how I feel as I navigate it all.

The last couple days the pain in my back and chest got a bit worse. I am on a pain management regimen of acetaminophen three times a day, prescription strength naproxen twice a day, an additional anti-inflammatory med twice a day and then oxycodone for breakthrough pain. I end up taking the oxycodone 2-3 times a day. This regimen keeps the pain under control, and allows me to function (somewhat - the oxy makes me very sleepy and a bit loopy). While at a cardiology appointment this week I pulled up my blood work that was drawn on Saturday during my most recent IV antibiotic infusion. One of the results hadn't come back the last time I checked - and I saw it for the first time during this appointment. My C-reactive protein (CRP) had almost doubled in ten days. CRP is a measure of inflammation in the body - although not specific to measuring what is inflamed. My CRP has been slightly elevated for months due to the infection; it also went up when I had a cold. This test result, combined with an increase in back pain was cause for concern, so I reached out to my rheumatologist. She is concerned that my autoimmune disease could be causing the spike in inflammation. To review, we withdrew all my immunosuppressant medications, except for my steroids, when the infection was identified last fall. During my last stint in the clink (I mean hospital stay) we maxed out my steroid dose for a few days. The increased dose didn't seem to provide any additional relief of the pain or symptoms, so it was tapered down to my normal daily dose. With the elevated CRP and increase in pain my rheumatologist increased my steroid dose slightly. I have bloodwork every 10 days when I get my antibiotic infusion, so we will see if the CRP decreases, and then re-evaluate our plan.

If you are still reading, thanks for sticking with me. I was feeling pretty "good" with my pain management regimen and felt like I was in a good routine - ONE STEP FORWARD. The increase in pain, the elevated CRP, the increase in my steroid dose felt like TWO STEPS BACK. I am frustrated, feeling a bit off, and disappointed.

I have had so many appointments. Today, I had an appointment with my Primary Care doctor to reevaluate my pain management regimen. I have been going to the primary care doctor every 2 weeks. Then, next week I have a PET scan - with two days of a special high protein, no carb, no sugar diet leading up to the scan. Hopefully this scan will provide some answers - is the infection still there? has it resolved even a little bit? has it spread?

My social post/s had a picture on an IV in my hand. I have become a "hard stick" for blood draws and IVs. For 15+ years I have been getting monthly infusions - I even named my favorite vein "Mr. Juicy". But years of infusions and blood draws have left Mr. Juicy full of scar tissue. Each time I need IV access (every ten days for my infusion) it takes at least two attempts, leaving me covered in bruises. Now dread having to be stuck. This has added to my frustration.

I am not driving while on pain meds, so I spend a lot of time at home. I nap, watch TV, participate in my online cardiac rehab classes, play games on my phone, and paint, paint, paint. I am obsessed with watercolor painting. I am watching tutorials, reading up on techniques, practicing skills, dabbling in my sketchbook, making postcards, painting spring flowers, etc. I have basically used up my watercolor set that I got not too long ago - the paints from that palette have been turned into innumerable creations. But don't worry - I ordered replacement paint pans that should arrive tomorrow. A big thanks to everyone that has sent me watercolor supplies! I like to paint on postcards, which are easy to send to friends. I have also been sharing some of my pieces with friends who visit, my doctors, my medical assistants, etc. I kind of love spreading the joy! My primary care doctor brought me a picture his daughter colored. She asked him to give it to one of his patients. This brought me so much JOY!

I am grateful for many things - and have to remind myself to focus on the positives. For instance:

I AM STILL HERE!

My son graduates from college on May 3rd. He picked up his cap and gown and his classes are winding down. Being at his graduation has been my goal and kept me moving forward and fighting through the pain and setbacks.

Spring is here. Things are growing and blooming. And it is Lilac Time!

My brother and his family came into town for Easter - it was so good to spend time with them.

So many people have reached out with support and encouragement.

I have had several people provide rides to appointments.

I've gone out to lunch with friends.

Hubby and I went out to eat with friends.

Friends have come by to visit.

One of my friends came and took me to get a pedicure.

Another friend took me to the library for a drop-in craft.

Another friend drove me to an appointment and then around the Arboretum today - the weather is gorgeous, and there is so much in bloom.

I have gotten lots of cards and gifts in the mail.

Hubby and I have been to Chicago Fire games, Lilacia Park, and to my son's campus for an awards ceremony.

I have volunteered at a legal aid clinic and am volunteering at a conference this weekend.

We have a house sparrow nest on our front porch in a wreath. We love to hear them, see them, and are hoping to witness the eggs hatching!

Please continue to keep us in your thoughts and prayers. Knowing that we are thought of, supported and prayed for helps keep us going and face the challenges as they arise. As you can see from the list above - friends and family are what are sustain us. I also know that this journey weighs heavily on my hubby and son. I greatly appreciate everyone who checks in on them and makes them feel seen and loved as well.

We are blessed, we are loved, and the journey continues.

Amazon wishlist: https://www.amazon.com/hz/wishlist/ls/6X3I4IWXR8ID?ref_=wl_share

Cozylark.com: any color "replacement watercolor pan", Cozy Lark watercolor sketchbook (Hardcover), postcards, specialty brush set, artist tape