waiting (week three)

It feels strange to be spending so much time away from this page that is like a second home to me. It feels strange not to be taking pictures and posting them, talking about all the good things I am enjoying, and thinking about “what am I going to post on my blog today?” This is the third week of this new life of having a “health condition” and it seems to fill most of my time. I also started working again this week (after not working for over two weeks for first personal reasons, time with friends, and then health reasons). These three weeks have been full of lots of different appointments, physical and emotional experiences, phone conversations, and other stuff…

The first week was filled with illness and pain and fever and fear. Having a fever for over a week does a number to the body. Feeling discombobulated, dizzy, achy, and out of sorts in the midst of not knowing what is wrong with you is something I hadn’t ever experienced. I was also in some extreme pain that was not the usual for the general diagnosis I had been given at that point. I have a new understanding of illness and pain now. I have a new understanding of the idea that one has to fight for one’s own health care. In the midst of feeling so awful, I had to insist someone listen to me—that even though my symptoms were not “usual,” I had to insist that I know my body. And finally, someone did listen.

The second week was filled with doctor’s appointments and waiting and feeling better physically even if some things didn’t change. After the first doctor I met with during this second week was more concerned with more tests and less concerned with how I was feeling, I called my primary care physician’s office and again expressed my concerns about how I was feeling physically. And after lots of insisting and talking and talking some more, I was put on an antibiotic by a new doctor, a woman, who is now my primary care physician. Even though it seems that it is possible that some of these symptoms may not have been connected and I might even have something secondary going on, I have learned that you must call and call until someone listens to you. Luckily, I didn’t have to resort to going to my primary care physician’s office and sitting there until someone helped me. My fever was so high, I wouldn’t have been able to drive myself anyway. After a few days on the antibiotic, I began to physically feel better. After meeting with my new primary care physician, I felt even better because someone was listening to me. Listening TO me.

The third week has been full of a more tests, more waiting, and deep breaths. I had to undergo a test that was to take ten minutes that instead took ninety. I have learned I am slightly claustrophobic (especially when three people are standing over me and I cannot talk or move). This has become a lesson in my biggest fears: not being able to express myself, not being able to control my physical space (and in some ways my physical body or what is being done “to” it), not having any answers, not even knowing the right questions to ask (or even being able to ask the questions), and on and on. And the important lesson of waiting. And learning what is about me and what isn’t and beginning to feel my way through the difference.

On Monday evening, when I was recovering from Monday’s experience of the test that lasted longer than planned, Jon and I watched a couple episodes of House. The same four DVDs from Netflix have been sitting next to our television for several weeks now. I somehow put things into the queue that I simply did not want to watch during this time of resting and waiting. And, House, well, House I didn’t want to watch most of all. I didn’t want to see some patient with similar symptoms as mine suddenly have boils on her body or some scary thing (no, I have not had boils). In the episode we watched, one of House’s colleagues was with an older male patient in the clinic. Suddenly House and three other doctors come into the room and started talking about symptoms and tests and “what can it be?” etc. The patient’s eyes were getting wider and wider until he heard, “but he is only 12 years old.” The patient whispered, “oh, it isn’t about me.”

I started laughing and said to Jon, “that is one of my all-time favorite TV moments.” The fear and confusion and the sudden beautiful understanding. It isn’t about me. Nope. Sometimes it isn’t.

I am sure it may seem odd to some that I am not sharing the specifics of what is going on with me. I apologize if that irritates or seems odd. At this point, this is what I feel comfortable with. When my grandmother passed away, I learned that people share a lot of platitudes because they do not know what to say. And they are also moved to tell you about a lot of their own experiences. And sometimes this is really, really helpful, and sometimes…not so much. Because we are in the midst of understanding what is going on for me…and it might not be a big deal (even if the tests to determine this are a big deal at times, at least to me) and it might be kind of a big deal or somewhere in the middle. Although I appreciate that someone’s uncle’s friend’s sister went through the same thing or the boyfriend of a second cousin had something similar six years ago this Christmas…those people are not me. And so far, I have learned that my “case” isn’t following the usual anyway. Last week, Jon had to listen to someone at his school share horror stories of something similar. Yep. Not so much helpful. I truly appreciate that the way we find common ground and understanding is to share our stories (anyone who visits this little spot regularly knows I am all about the stories), but right now, I am just taking this day by day and waiting. So instead of adding to hope or fear, I have realized that just sitting beside me and nodding and lighting a candle and breathing is what I am really looking for from others. First-hand experiences (like “my wife had this same thing last year” and “I went through something similar a few weeks ago)…yes, those are really helpful and I do want to share that I appreciate those very much.

So Week Three is all about waiting. Luckily it is all about turkey and mashed potatoes and gratitude, too. Even if that makes the waiting longer, it is nice to eat some good food, meet some new people (which is what we will be doing tomorrow), eat some more good food (when we make Thanksgiving ourselves Friday because we want the leftovers and I actually love making it all but wanted to get out of the house tomorrow), recognize the reasons we are thankful…oh and start listening to Christmas music!