A couple of Saturdays ago, my friend JaneRose and I were dining at Ascend Prime Steak & Sushi in Bellevue, WA, and our waiter asked if we were celebrating anything special (Ascend is one of those places you go for special occasions!) and we said our friendship. A moment later I realized that we had more to celebrate. Earlier that week I crossed an important milestone – it’s been four years since I had kidney failure. By total coincidence, on that fourth anniversary week, I had a routine appointment with the Nephrologist. At the end of the appointment, she announced that our check-ins will now be ANNUAL. Barring a relapse (because autoimmune f*****g diseases) – I do not have to see her for another 12 months!!!!
It was four years to the day of the Nephritis diagnosis which had been brought on by Granulomatosis with polyangiitis (formerly called Wegener’s Disease) and Lupus. It threatened the quality of my life and worse, life itself. And here I am, sipping a fantastic French 75!
To fully grasp how much this feels like such as accomplishment worth celebration and champagne you have to go back to the beginning.
- I went from seeing her daily, sometimes twice a day,
- To every other day,
- To weekly,
- Then every two weeks,
- To once a month,
- Then every other month
- To every 3 months,
- Then every 6 months
- NOW it will be ONCE a year!!!
In those four years so much life has happened – I’ve gained a new niece and nephew, sister-in-law, and my circle of friends has expanded exponentially. I’ve changed jobs and dwellings; I’ve traveled to far-away places – something that I’d been restricted from doing for about nine months to avoid the cesspools of bacteria of recirculating airplane air. As someone with a weakened immune system, I briefly wore a facemask for fear of catching something. To this day I’m wary about being around sick people. My colleagues know to stay home or away from me when they are unwell.
I’ve had personal losses of dear family and friends who at the time seemed that they would outlive me. And one of my care team doctors died from cancer earlier this year. 😢 #FUCKCancer!!!
Speaking of doctors, my team on doctors has been outstanding. From day one I felt deeply cared for and they never gave up on me. I was in stage 5 kidney failure and they took heroic measures to save my kidneys. They absolutely earned my trust. My case was a bit complicated so they would consult with other specialists. I’m even a case study at UW Medical Research! You know you’re something special when your new doctor looks at your chart and expresses respect for how you’re currently doing today and all the doctors who’ve reviewed your condition.
Another thing that I’m thankful for is the reduced medications I’m on. I’m down to four prescriptions that I take daily. This from about 16 in addition to Chemotherapy, blood transfusions, and weekly blood and urine lab testing. I bought a home blood pressure monitor which I used twice a day and journaled. I knew when to get to the ER or Urgent Care when my blood pressure got dangerously high. I also bought a pillbox, tracker and cutter. And even though I have good insurance coverage I got very acquainted with the details of my policy and I spent too much time thinking about how much this was costing. Also as a non-health professional, I gained a whole new breadth of medical terminology. All these culminated in me feeling very old for someone who had turned 40 years old earlier that year.
Do I still have Lupus? Sure, I do. Lupus is an ever-present autoimmune condition. Luckily for me, it is not always active. I still see the Rheumatologist (Lupus is managed by them), every three months but for the most part, I’m good. In the four years have had a couple of flareups but none that interfere severely with my quality of life. I occasionally get a scare here and there, for instance, I’ve been having crazy unexplained migraine-like headaches, so I recently had to get an MRI. While there’s no explanation why I’m now getting these severe headaches, everything checked out clear so I’m grateful for that. Maybe I just need less stress, more rest and sleep… lots of sleep!!
In these past four years, I have been incredibly lucky to have been supported, cared for, encouraged, and loved by my family and close friends who’ve seen me at my very best and very worst (God bless my husband, I’ve put him through so much!!). They’ve been with me through the good, the bad, the ugly, and the overwhelmingly beautiful in my life, taking it all in stride as I warrior through in this life with Lupus. I’m humbled, struck with joy, awe, and gratitude. I’m still here, present alive and thriving. Cheers, and thank you!
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