Progress and changing emotions.

My comforting routine has given way to fear.

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I have become quite accustomed to my daily routine. Wake up, take a handful of pills, get "dressed" (or stay in pjs), make the bed, sit in the bed and watch the Today show while drinking a cup of coffee, knit, do a Soduko, eat lunch, read my devotional for the day, binge watch Gordon Ramsey or home improvement/reality shows, take a nap, spend time with my boys, maybe have some dinner, watch TV with Jeff, get ready for bed. Wake up the next day and do it all again.

I find this routine comforting, calm and peaceful. Jeff works from home 3 days a week, my friend works from (my) home on Wednesdays, and a few different people have come by on Thursdays to keep me company.

So, just when I am getting used to this comforting routine, things on the medical front have started to move forward. My steroid taper has been on hold for weeks now as we worked to control the inflammation from my autoimmune disease, Takayasus' Arteritis. But my recent bloodwork came back with my SED and CRP trending downward for first time in months. Neither my Sed rate (ESR) or C Reactive Protein (CRP) are in normal ranges yet, but we are headed in the right direction!

This trend has led my rheumatologist to begin aggressively tapering my steroids - I am down to 8mg of Medrol (which is the equivalent to 10mg of prednisone) daily. Steroid tapering can make me feel like I have been hit by a truck on bad days, but there are also good days. I am exhausted and have been napping almost every day. I am not sure if this is from being anemic or just because of all that my body is coping with at this time.

So, lets review a few things:

1) I need to have open heart surgery to replace my aortic valve.

2) I need to be at 5mg of prednisone (steroids) to be a surgical candidate.

3) My auto immune disease, Takayasu's Arteritis, has been flaring - causing inflammation in my aorta. This inflammation is quantified by the SED and CRP blood tests.

4) I have also been dealing with painful inflammation in my left eye called scleritis. This has almost completely resolved over the last few weeks. Progress - yippee!

5) My auto-immune inflammation is treated with several things: Methotrexate, Xeljanz and steroids.

6) Tapering my steroids is a fine line between keeping my inflammation under control and decreasing the amount of steroids as much as possible.

It seems surreal - it has been six months since I was told I would need to have open heart surgery. For six months the goal has been to taper my steroid dose so that I could have surgery. Now as my steroid dose has come down, the prospect of open-heart surgery has become real again. And that is TERRIFYING. I had open heart surgery in 2006 and distinctly remember most of it. It was not pleasant. This time there is the added realization that having a mechanical heart valve will mean that I will be on blood thinners the rest of my life. So much to think about. The surgery itself has risks. The pain is incredible. The hospital recovery is hard. The recovery at home is even harder. Am I strong enough to handle this? Can I fight hard enough to recover well? As much as the "knowns" are scary, so are the "unknowns".

Please continue the good thoughts, prayers and encouragement for both me and my family. The care, compassion and generosity that has been shown to me and my family is humbling and appreciated.

Meal train - sign up to provide a meal on Wednesday or Thursday

Signup Genius - sign up to provide rides to/from medical appts or come keep me company on a Thursday

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