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!

spending time on a white sandy beach in hawaii...

the first night in seattle with the girls i couldn’t fall asleep because all their voices were echoing in my head. i could literally hear all of them. all of their beautiful voices. and now that we are once again across a state across a coast across a country across an ocean from one another i am wishing we were all back in one room laughing and talking and changing the world. i miss you all and wish you were here.

i am still synthesizing the weekend and all the beautiful, the painful, the joyful, the silly, the difficult, the real, the gorgeous moments.

for the last few days though, my focus has been on my health. i started feeling a bit under the weather Sunday but thought it was nothing (and if i am really honest with myself i have been exhausted for weeks but blamed it on myself and continued to play the game of i am woman i can do anything). by Tuesday evening, after i was back with jon, i was able to finally listen to my body and be honest that something was amiss.

and this is that part where i am wondering how much you share on your blog with people who are kind of strangers yet not at all strangers and important people in your life…i have had a week where i have been told i might have cancer yet probably don’t have cancer yet i need surgery yet i probably don’t need surgery yet i might still need a biopsy yet the doctor i need to see is on vacation so just sit tight until Monday but the doctor is a surgeon so you connect the dots…i have had a cat scan and a reaction to the dye used in the cat scan. i have learned that some nurses can find my veins and some can’t really so now i have to ask them to “cook me” with a heating pad before they even try. i have slept and learned how to stay on top of pain. i have found that you really can catch up on abc shows on abc.com and watched two episodes of ugly betty and caught up on grey’s anatomy all from the comfort of my bed with millie napping against my legs. and even though i had a fever of 101, i have learned i wasn’t going crazy that the democrats really did take the house and the senate. it was nice to have anderson cooper confirm that after my fever went down (yippee). i have learned once again that i am the luckiest “stay at home” editor in the world because my boss is amazing and has made it clear that i am to rest until we know more information. [to have your boss (who is really a friend) say that she wants you rested in case you have to have surgery (instead of thinking i better get all i can out of her before she has surgery) is a gift. and even though it is hard to just let the laptop sit there, i do know that codeine is probably not an asset when looking for comma splices and subject/verb agreement.] i have learned that when the nurse offers you a wheelchair you should take it (or you might bite it in the parking garage). i have realized that having my brother nearby so he could come spend the day is more important to me than i might have admitted. i have seen that i am never alone because my husband, my partner, is with me every step in every minute. a lesson i was starting to realize last weekend and finally have had to see because when i called to tell him i had to have the cat scan right away and was scared he sent an email to the faculty at his school and said he had to leave and that someone still needed to cover one of his classes and the tests were on the desk. just like that. (thank goodness he came because i could have never driven myself home.) i have finally started talking to my grandmother – as i was in the cat scan machine i just started talking to her – knowing that she had several of these before she died…hoping she could help me stay calm. it wasn’t the x-ray that scared me, it was the contrast dye that went through my veins. but now i am talking to her. haven’t heard anything back yet but still, this is one step several people have invited me to try. i have also found that singing IZ’s song about a white sandy beach in Hawaii in my head does help me go to that very place and sit on the beach watching for whales…so go ahead and poke me and x-ray me and prod me. i will be hanging out with the humpbacks.

i will know more Monday. until then i am resting and taking pain meds to stay on top of the pain (my new favorite past time). and drinking mug after mug of tea. and snuggling on the couch in flannel pjs.

(to read more about the incredible long weekend seven bloggers had in seattle last week, check out the blogs of the women i linked to in my last post.)