Better Safe than Sorry

So I agreed to the Rituxan, but I made the stipulation that I didn't want to start until after the majority of the snow season had passed.  My joints have been getting worse.  My wrists hurt, and my foot /ankle hurts so badly, that it wakes me up at night.  Any time I'm sedentary for any length of time, I get very stiff, and it's hard to get moving.  So, I agreed to try the Rituxan.  I was to begin on March 30th, 2020, but due to the corona virus/covid19 pandemic, all of that is currently on hold. 

I haven't been to UCLA since the last week of February, and from the look of things, it will be some time before I go in again.  My nurse practitioner emailed me and asked if I'd like to set up a "virtual visit" and have labs done locally, but the only place to have labs done locally is inside our hospital, and I'm not going there.  Last week, our local mayor revealed that he had tested positive for covid19, and was in self isolation, so I'm being very careful about how much I go out.  Our state is currently under a "shelter in place" mandate, so I rarely leave the house, except for groceries or to pick up prescriptions, or on solo neighborhood walks.  I certainly am not heading down to LA anytime soon, especially when I know that they are treating people for corona virus at the UCLA hospital.  Not gonna do it.  I am still on a small amount of prednisone and tacrolimus, both of which suppress the immune system, so I am being even more careful than usual.  I'm one of the seemingly crazy people at the store in latex gloves and a mask.  We are already used to living super clean, so we already had hand sanitizer in the cars, Lysol spray, and bleach on hand.  My next appointment is scheduled for mid-April but I'm not sure yet if I'm going to keep it.  The way that I see it, aside from my joint pain - which they can't really do much about - I'm fairly stable, and the only thing wonky with my blood tests is the high hemoglobin, which seems to come and go.  (Hemoglobin/hematocrit was at the high end of normal range at my last two blood draws.)  If covid19 continues to be fatal for months, I will have to figure something out, with regards to having blood drawn, and maybe scheduling a video call with my doctors, but at this point, I'd rather be safe than sorry.

I'm continuing to taper VERY slowly off the prednisone, and hope to be off it completely, eventually here.  I alternated 2mg/3mg daily for over a month.  I tried to go down to 2mg daily after three weeks, but I was hit with extreme nausea and diarrhea, so I went back to the 2mg/3mg dose for another two weeks.  I've been taking 2mg for about 10 days now, and aside from the increased joint pain, and extreme fatigue, I've been handling it okay.  So, like I said, I'll get there eventually, but I just have to be patient with it.  I don't know if when I'll be able to stop tacrolimus.  I'm guessing it might be one that is with me for a long time, especially while I continue to show signs of GVHD.  I've been having the tacro shakes pretty badly lately, and I'm on a very low dosage of the medication.  My hands shake uncontrollably, especially in the afternoon - a couple of hours after I take my dose.  I definitely have a sensitivity to tacro, as I take .5mg daily, and my levels consistently run between 8-11, and my doctors are aiming for about 5.  I tried taking it every other day, instead of every day, and my levels were too low, so this is the best that we can do at the moment.  As long as it doesn't give me the debilitating headaches, I'm willing to tolerate the shaky hands.

In other news, I've been extremely busy lately, as Keith broke his leg two weeks ago, on a snowboarding trip.  Luckily he had some epic days on the mountain before it happened, and even was featured on the local snowbird guru's website:

Glad that he had a few good days of riding before this happened:

Fractured fibula.  Luckily, it was a clean break, and he should only need to be in a cast for four weeks.  The doctor said that it should heal completely, and after a week of rehab/a walking boot, he should be as good as new.  Unfortunately, four weeks is a long time to be on crutches, as he isn't supposed to walk on or put pressure on it at all, so it's making him kinda crazy.  It's his right leg, so he can't drive at all, and everything, every little task is incredibly difficult.  Taking a shower is difficult.  Carrying anything is impossible.  The only bright side in all of this is the the entire country is shut down right now, so he's not missing the last of the spring riding, because everyone is stuck inside their houses on lock down.  (If he wasn't hurt, he'd be climbing mountains, and riding back down them, but he's having to learn how to be a patient.  He's not good at it.)  I'm doing my best to be as good as a caregiver as he was to me.

Aside from that, I think that the biotin might actually be helping my hair growth.  It is still pretty damaged looking, but it's definitely getting longer.  A little bit actually peeks out from under my hat these days.  The front is still sparce, but at least its coming in some.  After eighteen months.  About time.

Eighteen months later

I'm also starting to see my cheek and collar bones again.  I've been following Weight Watchers for five months, and have managed to lose 25 pounds.  I still have a bit to go, as it seems like I've lost quite a bit of muscle mass, being on steroids for so long.  My body composition is much different than it used to be - steroids can redistribute your fat stores to your belly, your face, your hump, no place good, really - so I'm going to need to lose more than I planned on, and try to build some muscle to get my body back into a shape that I recognize.  Which, lets face it, was not exactly toned and fit before, but I'd still like to be a little stronger, and a little less fluffy.

So I've pretty much just been hiding out, which - in all honesty - most of the time, is cool with me.  That's something about me that really hasn't changed.