Long overdue update

things briefly derailed, but are getting back on track

---

This is a long overdue blog post and update. Over the past few months things have been "normal". I continue to get stronger and regain independence. I saw my rheumatologist, and cardiologist somewhat recently - and they both agreed that things were finally stable and made no changes to medications, routines, etc. because they didn't want to rock the boat.

My dizziness has been well controlled, allowing me to drive, navigate stores, and get out more. What a welcome step. I love my hubby and appreciate all his care and caretaking, but being able to do things on my own has been amazing. He is so good at just "doing" to ease my burden - so we had to adjust our framework together as he let me "do" things that he has been handling. Things like laundry, deep cleaning (our stove hasn't looked this great in a long time). But there are also times where I am over ambitious, and I have to ask him to finish a task for me.

I have started taking care of normal/routine health maintenance things like going to the dentist, having my colonoscopy, seeing my ob/gyn for an annual exam, going to the eye doctor, scheduling my mammogram, etc. I started doing short cardio workouts several times a week as well. Most of these things had been put on hold while we took care of other more pressing medical needs.

I continue to CREATE and craft all sorts of things. I am enjoying crocheting, some sewing, pottery, plant care, etc. I took some pottery hand building classes at the local park district and loved learning more about pottery. I am also taking a Crochet 101 class through a local yarn store. I made some fun costume t-shirts for the local TexMex restaurant for the town's Spooktacular event.

Both my boys ran the Chicago Marathon. We spent the weekend downtown and I spectate like a BOSS! I couldn't yell - so I bought a cowbell. I also had the balloon floating over my head so the boys could spot me.

Marathon Spectathlete

I was able to attend Family Weekend at my son's college this year! It was fun to see the campus abuzz, see his friends, and attend the football game.

Go Cardinals! (Who ended up being D3 Champions)

I celebrated my birthday at Dave & Busters with family and friends. I also got together with "old" friends from when I was teaching (20 years ago) for our annual birthday celebration.

Birthday prize at D&B

We traveled over Thanksgiving to spend time with family out of state. It was lots of fun and great to be together. We did all sorts of fun Christmas activities, including cutting down our own tree. I was able to walk through the fields to help select the tree this year. I did leave the cutting and carrying to the boys. We enjoyed time with family over the Christmas Holidays.

Holiday Lights with family

I continue to volunteer with the Benevolence Ministry at our church and the local Walkin Ministry. I have also coordinated a few funerals in my contract role as Wedding & Funeral Coordinator at our church.

Amongst all these positives, there is one bummer - I have reverted back to watching church online at home. We did go in person for a bit - but my inability to sing (which used to be an integral part of worship for me) and the inability to converse with people because the environment is so loud was discouraging. I feel like The Little Mermaid when she gave her voice to the Sea Witch and could no longer talk or sing. I even made myself a shirt with a picture of Ariel with wording that says, "Sorry, no voice".

I felt like I was getting my groove back. I could finally walk up the stairs, utilizing every other foot and carrying things in my hands. I was going to doctor's appointments by myself. I was feeling like myself again. (Notice the past tense "was" in this paragraph).

Then things slowly started going off the rails. I started having some back pain, that turned into severe back pain. This led to an ER visit at a local hospital which ruled out any cardiac complications. I went home with pain meds and muscle relaxers. A day or two after the ER visit, I developed a painful rash on one side of my torso. A visit with my primary care doctor confirmed that I had shingles. She prescribed antiviral medication and more pain meds. Things continued to get worse. I slept most of the day, was nauseous and had no appetite, I had a constant headache, and the rash got worse - much worse. We touched base with my primary care doctor and my rheumatologist. And then we were off to the ER again. But this time at the teaching hospital in the city where I receive all my care. I walked into the ER and it was packed. They took my info and I had to go wait outside the ER waiting room because there was nowhere to sit. I heard that the wait time was over 12 hours. People who had arrived around the time that I did were getting called back to be triaged. When my name was called, a volunteer walked me past triage and situated me in an isolation room. I was triaged in this room, saw an ER doc for evaluation, and was admitted in just a few hours. My rheumatologist saved the day again, by calling ahead and pre-admitting me. I was treated for dehydration, closely monitored, got back on track with pain management and was evaluated by the Infectious Disease team. Luckily, I started improving and only spent one night in the hospital. I went home on a longer course of anti-viral medication and some additional meds for nerve pain. Also, they paused some of my regular medications, including the drug that led to relief from my dizziness. All my meds have been restarted and hopefully things will level off soon. If you haven't had shingles - they are very painful. And can continue to be painful for a very long time. I am feeling a bit better every day but am still regaining stamina and dealing with constant discomfort.

We are celebrating our son's 21st birthday tomorrow with family and have a big vacation coming up at the end of the month. (The need to escape the never-ending Midwest winter should be a necessity for everyone's mental health). So, I will press on, leaving this speed bump in the rearview mirror!

In other news, hubby's employer switched insurance companies this year. I was quite nervous and apprehensive about the new coverage, but it has been very consistent with the previous insurance company. We met our annual out of pocket max for insurance before my shingles debacle. I had to refill my biologic drug that is the main part of my treatment for my Takayasu's Arteritis. This three-month supply was over $6400 for our portion. We are fortunate to have an HSA account and were able to accommodate this expense, I know that drug expenses can be quite the struggle for lots of people with chronic conditions. But - the rest of my medication and medical care this year should be smooth sailing financially.

Here's to getting back on "track" without further derailments.