1 Year + 135
1 Year +135
This pretty much Sums up Tate’s week. STILL waiting on the kidney plan. The reason this is SO frustrating is because new meds to treat a lupus flare typically involve a course of steroids and a new immunosuppressant (as a flare indicates disease process isn’t being controlled) either in infusion, injection or oral forms. It was decided a couple months ago that Tate’s joints were in jeopardy of something called avascular necrosis (lack of blood flow from the steroids causing bone death resulting in joint replacements)if we continued using steroids. We know she’ll need them again, so they’re being reserved for organ and/or life preservation. That removes any options of immediate treatment and relief, which I’ve asked for on repeat. (But completely trust and agree with her team & the steroid decision. Love/hate relationship with the steroids!)
Other types of meds take weeks to months to have an effect-if they’re the correct med. They all come with their own risks. Every week that we wait on this kidney pathology, is another week away from relief. Tate is SO strong and resilient, but this is getting long. This last week especially, we’re noticing more vision changes and some trouble with her eye’s working in sync. We’re praying it’s nothing progressive but a symptom more of the fatigue and generalized inflammation. But with Tates history with central nervous system involvement, it reminds me to take a huge breath and throw it all at Gods feet once again.
This week, Monday is normal appointments and therapies and Tuesday brings a telehealth, Occupational therapy and anesthesia for an upper endoscopy to look at potential contributors to the weight loss and gut issues as well as Tates eagerly anticipated nerve ablation on her knees. A full, but good day is what we’re planning for!