the journey of a Cushing’s survivor

OK, time for a new doctor

I haven’t seen my Portland-based endocrinologist since I moved to Seattle more than three months ago. Turns out the 3+ hour trek to Portland from Seattle just wasn’t in the cards for me.

Initially, I was uneasy about finding a new doctor. But as the weeks have passed and I’ve settled into my new surroundings, those fears have subsided. What I wasn’t prepared for was how difficult it’s been switching doctors. I’m sure many of you can empathize.

I did a fair amount of research for endocrinologists who specialist in adrenal disease / Cushing’s and found one that I wanted to make an appointment with. Turns out I can’t even make an appointment with this doctor until my previous endocrinologist sends over my records. Then it took my previous endo two weeks to finally get my records faxed to the new endo. Come on people, HOW HARD IS IT TO FAX PAPERWORK? I think snail mail would’ve been faster.

I now have an appointment scheduled for Nov. 14th to meet with this new endocrinologist - and I’m scared as hell. What if this new endo blows me off? What if he says nothing is wrong with me? What if he says this is as good as my recovery is going be?

For the most part, I try to stay positive about the progress I’ve made in my recovery. But still feel like something is off with my body. Here’s a list of the things I’m still struggling with.

  • swollen ankles (without socks or with loose fitting socks)
  • visible hump on the back of my neck
  • full, sightly bloated stomach
  • inconsistent sleep (some nights I sleep well with no sleep aid, others are very restless with no sleep aid)
  • difficulty getting a deep breathe when laying down in bed (I can breathe just fine, just not a deep breathe)

I thought I would’ve had more relief from these symptoms by now. Maybe I’m being impatient. But how do I know when recovery ends and problems begin? Will I always struggle with these symptoms?

Can anyone of you shed some light on this? Have all of your symptoms gone away since being in recovery? If not, what do you still struggle with?

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