My treatments continue. They continue frequently enough that I joke I’m going to move into my rheumatologist’s office during treatment week just to make the commute easier.
All I need is a shower. I mean I’ve got my comfy pillows and blankets. There’s a tv. A fridge. I’m all set!
But as my life continues…as this ‘new normal’ continues…I need more.
Right now, I’ve become healthy enough to wake up, get the kids to school, take myself to treatment, come home, maybe cook dinner if treatment didn’t kick my ass too much, and rinse, lather, repeat.
Non-treatment weeks are better. I can handle some very light housework. Like maybe picking up some toys around the house, a load of laundry here and there. Dinner, dishes. You get the idea. But it all depends on the day. We’re trying some physical therapy, but that too depends on what my body is up to that week. Right now it hates the cold and all the pools are too cold for water therapy. I need a HOT TUB in order to exercise. So I walk the dog, but my doctor doesn’t really want me walking on concrete a ton so Nicky and I don’t go too far. We’re also eating rather well around here. I’m even working with a dietician to try to get these steroid side effects under control.
occasionally I go to a store. I say ‘a’ store because that too is about all I can handle. Well, that’s not entirely true. I could probably push myself and go crazy and run around all damn day but who are we kidding- I tried that and it only landed me admitted to the hospital up the road every few weeks. So while I might be capable of more, I’m limiting myself. Make no mistake, I loathe limiting myself. But I’ve learned I must if I want to live.
But part of learning my limits is also knowing when to expand them ever so slightly.
So as I start my next round of treatment, I will also be starting to close a chapter in my life I’ve been trying to close for twenty years.
What many people may not know is that I never finished my degree.
I was one of those interns that interned herself right into a full-time gig. I was on-the-air reporting at 20 and anchoring by the time I was 22.
As a matter of just wanting to finish I tried to go back several times, but work always took over. There ended up being a string of universities and community colleges from Michigan to Ireland to Florida to California where I tried to wrap up what I had started.
Now I find myself disabled, IV in my arm every 2.5 weeks, and needing something more in my life than the endless string of lab results. No really, that’s what I get excited about these days. Lab results. Want to know what my last C-reactive protein was? I can tell you…
I can’t handle much. I can’t type for long, as my fingers cramp up. I can’t physically sit in class, so I have to attend only online courses that allow for me to make my own schedule around the days I’m doing well and the days I’m not doing so great…but I can handle a bit. And by ‘a bit’ I really mean a tiny bit. If I can sit here and read while being pumped full of IVIG, there is no reason I shouldn’t be reading a textbook. That’s my theory anyway.
So as of today, I’m officially, and once again, a student. I’m not much of a student, but I’m a student. 6 whole credit hours. Enrolled as ‘disabled’ which, I won’t lie, hurts a bit emotionally to check that box. But I am a student. Which is a step up from being incapable of getting out of bed, incapable of getting the kids to school, incapable of getting myself to the doctor. Slowly…slowly we’re adding things.
The kids are excited…they want me to do homework with them, at the kitchen table just like they do. I think they envision us all using crayons for projects together which makes me grin.
My husband is laughing, knowing that eventually I will have to leave the local community college online learning for a UC online learning system and he’s DYING at the thought I *might* graduate from someplace like USC (which pains me to type) … having been raised an Irish fan through and through.
My Mom is proud of me. This is a big step for her daughter who was losing organs left and right not too long ago and is now, finally, doing something for herself instead of trying to make sure everyone around her is still OK after the ‘crisis.’
She’s right, of course. Moms are like that. I’ve spent so long trying to get healthy but as the doctors worked to figure out HOW to get me healthy, I worked to make sure everyone around me was ok. That was my only concern. Because no one was ok. We’re still not OK. We’re adjusting. And I finally had to take a step back and realize we’re never going to be ok until I learn to make myself whole…to make myself happy…to make myself ME first.
I’m headed down that road now. And I couldn’t start down that path until the doctors figured out how to stabilize me. To make sure my organs were safe. To convince me I wasn’t going anywhere, that this was under control, relatively speaking, and life could move forward.
Life can move forward now.
For me. It’s going to move slowly, but it’s going to move. It’s going to move differently than it did before. I have to feed my mind. I have to do more than fret and hand-wring. There are going to be ups and downs with this and I am learning to build those ups and downs into my life plan. From my long-term life plan to my daily life plan. I’ve done all I can to try to take care of the kids, of my husband, of my family. I have done very little to take care of me.
That seems strange to write when all of this ‘crisis’ has been about me. Me. Me. Always about me. But trust me, in my head it’s been nothing but what it’s done to everyone else. What I have done to everyone else. What I continue to do.
So the next chapter starts as the others come to a close. With doctors having found a plan…finally. Finally after years we have a plan that appears to be working. Slowly. Very slowly. But working. With those I love doing what they need to do as life goes on. And with my stubborn self having learned limits, a bit of patience, a ton of self-control, and a new way of operating as a woman, wife, and mother with a chronic illness.
Scratch that…as a woman, wife, mother, and student with a chronic illness. Hopefully we’ll add graduate to that list this time around.