The Chronic Journey… another step
They told me blogging and writing and staying on top of it would be hard. Months like the past one make it really tough! I’m not sure who “they” is, but “they” has got to be the smartest person on the planet. Truly. I feel like I should crown this person as “Sir They” or “Prince They” or something like that. Wisdom, this They person…
Moving right along….
I have such great family and friends who have called or texted to check on me. So I thought an update is in order to bring everyone up to snuff on the happenings in my chronic world of late. It’s been crazy… crazy busy, crazy spontaneous, crazy lazy, crazy lonely… and yes, crazy discouraging. All wrapped up in to a ball we call “chronic.”
In late February, at my Rheumy followup, I didn’t get good news. The RA was flaring and now Sjogrens is testing positive. Let’s see… that’s Rheumatoid Arthritis, Sjogrens disease, SICCA syndrome, Addison’s/adrenal insufficiency, dysautonomia, inflammatory bowel disease (cousin of Crohns), ulcerative colitis … I think that’s it on the AI’s (auto-immunes). Of course, there’s the pacemaker stuff – which we actually have a lot of fun with – and various assortment of other, less in-my-face health issues. I quit counting long ago. Honestly. I just shake my head.
So, the metho-chemo was restarted. Not totally surprised, since I’d not been feeling well since October, when I visited the Rheumy for a possible flare and hopped on my buddy, prednisone. With the metho, the other meds that go with that were started again, as well. No joke, I went from zero daily meds and a season of healing and remission to 11 meds in one day. It was crazy. My silly head was spinning off my shoulders. What I thought would be a routine followup appointment for 30 minutes turned in to over 6 hours of various MD appointments, labwork, xrays and other appointments I’d not made time for in my schedule. (Ironic how often that schedule thing pops up, yes?)
This time, they took me out of work. Totally blind-sided on that one. Said I could teach a few piano lessons and my small little fitness class I volunteer for, but nothing else. Seriously… except that the doctor asked me to take some time off earlier in February and I thought the summer was better timed, I just didn’t see this one coming. But he took me out. Boom. Done. 60 days. I think we chronic’s get used to our compromised state of performance and just assume that we’re kicking along able to do the things we’ve always been able to do. When sometimes that couldn’t be further from the truth. And the unpredictability… ok, I’ll save that topic or another time. #preach
A couple of weeks later, I got a terrible cold, so we had to hold the metho, which let the RA get ahead and the flare got really bad. We were truly behind the 8-ball, and I began to see the wisdom in not working right now. This was an awful cold, we thought it might be the flu, but it wasn’t. There just isn’t such a thing as “little” anything while on these immunosuppressant meds. My AI buddies will know exactly what I’m talking about. So we had to try and get in front with tons of prednisone. Ahhh….my friend, prednisone. It’s a love-hate relationship we have, this little guy and me. But he has saved my behind on many occasions, so I let him hang around and be my friend. My not-really, pretend friend. Kind of like we pretend with people in real life, sometimes. Okay, another post another day…
I returned for a 30-day follow up last Tuesday, hoping to hear that the metho, and especially the recent prednisone, had calmed everything down and we could quickly reach a maintenance plan, getting back to life as I knew it. But this wasn’t the case, and the inflammation was even worse. The decision was made to add Enbrel back in to the mix, a decision I was sad to hear (but this is where trusting your healthcare team comes in to play). There were insurance delays, and two days later the inflammation and flare were headed to the heart, lungs and ribs – their favorite place to hang out. That mess hurts. Please indulge me to scream this… THAT.MESS.HURTS. Like nobody’s business. I thought I was having a heart attack of some kind, not the sternal pain itself because I’ve had that before and it felt familiar, but this time it radiated in to both my jaws. That was new. And that scared me tremendously. And I was driving at the time with nowhere to pull over on these mountain roads. So I called the docs the next morning, was called in stat for cardio workup. Thankfully everything was okay cardiac-wise, so we hit it from the RA side of things. Tons of steroids, something to help with the pain for a few days so I can get some sleep (because no sleep means worsening flare, right? I despise this cycle…), and we’re back at home resting. Still no work, at least for 30 more days. Wow. Ouch.
Things are better now, though we’re not quite on the maintenance side of things yet. Followup is in May and I’m hoping to get better news. In the meantime, here are a few things I’ve been learning…
It’s okay to step back. All the way back. Jesus did.
The taking me out of work thing was hard. I shed lots of tears on that one, and there’s lots going on at work and I feel I need to be there. And other relational things to be addressed. But it was the right thing to do. There are so many sick days right now that I’d be calling in every other day. I just can’t do it. And if I’m gonna be sick and toss my cookies, I’d rather be at home, y’know? Those 30-min appointments that turn in to the 6-hour “gotcha!!” days at the doctor’s office… what employer wants a call twice a week that you have to be at the doctor all day? So for now, I’m settling in to trusting my doctors and doing exactly what they tell me to do. That surrender thing is hard. I don’t do it well. I’m not cut out for it. But I’m learning that even Jesus took time completely away from everyone else. He rested. And so I’m trying.
Have a team you completely trust.
I can’t say enough about this regarding your healthcare team. My team just gets me. They love me in spite of myself, and I’m honest to say, I don’t always make their job easy. But they reach out in to my world to override my own decisions and get me to a better place. Why? Because, a) they know how to do this and do it very well, b) they have objectivity that I don’t have, and c) they are for me, they want me to win this. This last week, through my tears, I looked up at the doctor who’s been with me from the beginning, way back in 2006-07 and honestly asked, unsure of what the answer would be, “Are we going to beat it this time?” And he gently hugged me and reassured me that yes, we are definitely going to win this. He is for me. His entire staff is for me, from the front office to the exam room to the billing group – they want me to win. If you are struggling with your team, or feel there’s some improvement that could be made, stay with me on this journey. I’ll be teaching on this particular topic and we’ll take a week or two to look at ways to get you to a better place. Trust in your doctors and nurses cannot be over-stated. This is a necessary component of the chronic conundrum if you are to succeed. And I’ll give you some tips on how to get there.
Lean in to family and friends. It’s okay. In fact, they’d probably appreciate your honesty and the opportunity to help.
I’m terrible at this. This is probably a pride thing, but we just don’t ask for help well. I’m learning more about how I deal with needing help, how that runs counter to over-achieve, and how I can better respond in this area. It’s a life lesson that will probably go on forever, as I need tremendous growth here. There are likely some of you who are in the same boat I’m in. Give it up. Give in. Ask for help. The plastic mask doesn’t work on this one, it just doesn’t. And the lessons other people learn by helping us are rare, priceless tutorials in grace, compassion, and service. Don’t take this away from them, young people especially. They want and need to learn how to be compassionate and service-minded, and my generation – in our quest to self-sustain and provide – has taken many of these opportunities away. Let them learn. Let them serve. Put your pride in the backseat behind their generosity lessons. They will thank you for it one day. And your body will thank you for it this day. Maybe there are pride lessons we need to learn as much as they need to learn compassion and service.
There’s so much more, but “Sir They” has said that about 1200-2000 words is the perfect blog post. So I’ll close for now.
Thanks for the inquiries and especially the prayers. I hope to spend my time off work writing more and visiting doctor’s offices less, so maybe I can get some good, meaty studies out to my ChronicPraise buddies soon. I’ll be sure to keep everyone posted.
So, please keep those prayers coming. And log onto the KneeWall and let me know how I can pray for you! Also, consider leaving a note below or making a share on social media. I’d love to hear from you or hear your story – the journey’s been kind of lonely lately 🙂
Will see you soon,