I'm still here, honest! There have been various prods for more from me and I have found myself in the conflictual grip of feeling guilty about not writing and then feeling guilty because I am writing, as I am right now, when there are simply so many things that need to get done. I am aware that the predictable, comfortable rhythm of my life has been lost and replaced by a meter that is floundering to find a steady beat....
I have spent the morning trying to figure out our healthcare choices here. Our insurance, while very generous with benefits, is limiting quite a bit the number of choices of physicians we have. I still don't have a doctor. Part of me has been avoiding dealing with this because the thought of starting over again with someone new simply makes me want to cry, quite literally! When you have a chronic disease you see a lot of your doctor and that bond can be quite an intense one. To have to tell my story all over again? Sure, I have a HUGE envelope of medical records from both my primary care doctor and my pulmonologist in Denver, I have CDs and CDs of various imaging studies done over the last several years: x-rays, CT scans, MRIs, but I've been in this long enough to know that as soon as I walk in that door it will be up to me to verbally convince this new physician of the kind of care that I need. And how long will it take he/she to know me, know the type of patient that I am? My doctor in Denver told me that it was so important to find a doctor that wouldn't underreact or overreact to my disease. How long will it take me to trust that I have found that person? How will I know? Today, I am overwhelmed by these questions.
I managed to get MaeMae in to see a doctor this afternoon. She has been tired and under the weather and I found a tick in her scalp not long after she got here. When I called to register her as a new patient and request a general physical to satisfy school requirements I mentioned the tick in passing and they wanted her to come in right away. Really, she has moved across the country, started at a new school, had a nasty upper repiratory virus last week and a tick bite....it could be any number of factors contributing to her symptoms. But it will be good to at least make contact with the children's physician and start building a relationship there.
And at the risk of sounding totally boring, I'm really tired. Disease activity? Life circumstances? Who knows. Honestly, I think you'd be tired too!
"Well, you will never run a marathon." Etty suffers from ongoing Sarcoidosis which is a chronic inflammatory disease that primarily involves the lungs. Niamh, her sister, likes to run and is going to run the Cork City Marathon on June 6th to raise funds for those suffering from chronic lung diseases. This blog will be a parallel account of their trials and tribulations in the coming months: the would-be marathoner; the mother-of-three moving home and struggling with serious, ongoing Sarcoidosis.
I am, I am. Just reading it.
ReplyDeleteMe too! Take care.
ReplyDeleteS.
Exhausting! An endurance event all of your own. Not boring, just real! Respect!
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