Well, here I still sit in Cleveland. It’s still cold (having warmed up at this point to 11 degrees F from a starting point of 6). And my blood is still not adequately thinned. In fact, it’s taking its sweet time thinning out at all, unfortunately. My INR (a measurement of how quickly blood clots) is being checked every other day. “Normal” INR is 0.9 – 1.3. “Therapeutic” INR for people with an active clot situation who are taking blood thinners is usually considered to be between 2.0 and 3.0. The doctors here want me to be at or above 2.0 for five days before I can discontinue the injectable “bridge” anticoagulant I’m taking in addition to the warfarin. On Monday my INR was 1.0. Today it was 1.1. This isn’t what I was hoping for.
I’m also dealing with a new person in DC. The doctor I had really become fond of, and who had really been in my corner, trying to help me get home as quickly (but safely) as I could is no longer in DC. He had only been filling in there, passing time while he himself was on medevac from his post in Beijing. And though he had once been in charge of the entire State Department medevac program, he took the Beijing assignment as a last hurrah: he has hit State’s mandatory retirement age for FS folks of 65, and he’s only in Beijing to retrieve his belongings and tie up loose ends before leaving for good. So now I have a new point of contact. And so far (I continue to hope it will change) she is neither the strong advocate nor the proactive and informed professional Dr. Miron had been. So far, she is much more the medical bureaucrat I had expected to be dealing with in the first place. Dr. Miron spoiled me.
I do have positive things to report today, but they might have to wait while I complain just a little bit more. And I realize how ridiculous this complaint is going to sound, and perhaps how ungrateful, but I’m being honest here about how I feel: I’ve had enough of no agenda (other than waiting for blood tests and dosage adjustments). I’m thoroughly tired of my life of relative leisure. Never in my adult life – never! – have I had this kind of unstructured time. And I feel like a spoiled brat complaining about it. I wish I could share this time with Andres, who never gets this, especially not right now as he is not only shouldering the burden of his never-relenting job but also care of the kids and their practical and emotional needs. I wish I could share it with my many friends who juggle kids and work and housework and volunteer work and immense obligations with such grace and good cheer.
But what I am longing for right now is the sense of purpose and satisfaction that my usual responsibilities bring. My regular life can sometimes be exhausting, without a doubt. Before I was medevac’d I was definitely on the verge of feeling utterly overwhelmed. I love our foreign service life, and I am very glad we chose it, but it’s hard sometimes. It’s a real grind starting from scratch with everything from spices in the cupboard to daily routines to friendships. It’s a grind in the best of circumstances, but just as I was settling in and feeling at home in Accra the blood clot happened. And then the disorienting and frightening near-fainting spells during the night, which not only added stress and worry but left me sleep-deprived and foggy. Through it all, Andres and the kids and my friends and family were all so clearly and vocally on my side that I kept going, but it was a real struggle.
So at first the rest was so healing and restorative. Once the arrhythmia was diagnosed and the nighttime spells stopped, I started to feel so much better. Night by restful night I felt like my body and mind were rebuilding themselves, and I would be ready to return home stronger than ever. I’d had opportunities to be with loved ones I hadn’t thought I’d see for two years. I’d had unprecedentedly leisurely time with my friend Dana – in all our years of raising our kids side by side we never had the kind of opportunities we had in Cleveland to just be together without any particular agenda. It was delightful and I realize how very fortunate I am to have had the time I had with her and with my parents and with my mother-in-law. It all left me ready to return home with a renewed spirit and the confidence of good health. I felt so very ready for a fresh start.
Now the confidence I’d had in my good health has taken a beating. I don’t feel defeated, by any stretch, but definitely taken down a notch. There are vastly worse medical fates than a lifetime on blood thinners, but the idea still takes some adjustment. When I was at UWC (the boarding high school I attended) I went through a bad jag of one nasty virus after another and just couldn’t seem to get healthy. My advisor (the inestimable Hannah Tyson), in no uncertain terms, gave me the kick in the butt I needed, encouraging me to take my health seriously, get active, and feel more in control and less a victim of circumstances.
I took up tennis and stair-running and started making far better use of the school’s sublime mountain setting for hikes and jogs. I started eating a bit more carefully (though I was still a teenager and had my share of pizza parties with my music buddies). And bit by bit my self-image changed. I had been an athlete as a tween/early teen and had left most of that behind in favor of violin and writing in later years. I reclaimed it, and it’s been a huge part of my self-identity since. In Dallas I rediscovered bicycle riding for fun and transportation and would walk and ride all over Oak Cliff. Juarez city design left me not as able to bike but I still walked daily, whether to the supermarket or friends’ homes or the Consulate, or just around my neighborhood.
We haven’t had a car in Ghana so far, so I was gleefully walking and biking, enjoying that so much was accessible on two wheels or two feet. Again, I feel like I’m whining, given that I should be grateful I’m alive and getting excellent treatment, but the knowledge that I will have to seriously reassess my daily life in Ghana in light of permanent blood thinner use is a blow. The bicycle is probably out. There are far more hazards on the roads in Ghana than in Oak Cliff. There are open concrete gutters with no barrier on the roadsides. Roads are often narrow and traffic unpredictable. Motorcycles zoom between cars and pedestrians and cyclists. A young girl in the Embassy community was hit by a motorcyclist as she walked on an Accra street (there are not always sidewalks). She was ultimately OK, but she was hurt. These are risks I was able to live with when bleeding wasn’t a risk. But they’re not anymore. So I guess part of my task when I return home is to find a warfarin-friendly way to still feel active and athletic and strong. I’m not typically one for the gym, but maybe it’s time to explore new options.
But I’ve become distracted from my original theme. I guess not really, though – because this is part of my dilemma now. I’m feeling so well. I have no pain in my leg, just a sort of sense of heaviness sometimes. Only the mildest swelling. I’ve caught back up on my rest post-hospital. But I don’t have my husband and kids’ company or the joy of doing things to support them. I love being a homemaker. I love cooking and baking and being responsible for our home. It brings me immense satisfaction. I love my proofing and editing work, as well, and I find it fulfilling, but it’s not in the same category. Even when it’s hard I absolutely love my “real” job as a part of my family, and I miss that so, so much. So in so many ways right now I feel separated from who I am, who I have chosen to be.
Well, this is a downer. Sorry for that. And again, I want to say that I am well aware of the potential anger my complaints could provoke. I realize that most wouldn’t volunteer for a potentially life-threatening health situation, but who wouldn’t like some time to spend with family and friends and no agenda and no obligations beyond making it to appointments and receiving/acting on periodic instructions from doctors? I am unspeakably fortunate to be here, receiving the care I’m receiving. I realize that as a family we make sacrifices most employers don’t expect of their employees and their families, but most employers also don’t send family members to world-class medical facilities when there’s a serious health issue, either. Had all of this happened while Andres was still with EPA-OIG I would not be receiving this level of care. There is so very much to be thankful for, and that’s where I am trying to stay focused. But I miss being useful. I miss being the crazy lady on the bike or the crazy lady walking to Accra Mall from Cantonments (it’s actually only maybe 3.5 miles but people seem to think it’s not doable – it is, and there’s even sidewalk the whole way). I miss my husband and my kids and being there for them. Come on, INR. Come on!