Cushing’s Help RSS FeedI did not get a chance to blog yesterday because I ran out of spoons. The past couple of days have been rough. I was talking on the phone with my mom and said that I was really dragging today and I didn’t know why. She then reminded me that I have felt this way for several days. Today is even worse but because it is the weekend, I can make this the first thing that I really finish. FYI It is early evening.
via Spoons.
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“5. “I wish I could stay home and sleep all afternoon/I wish I could take a few months off work/I don’t have the option of staying in bed – I have children” or anything in that genre. This one kind of follows the same theme as the others. I didn’t stop working because I had the luxury to do so. I got a call from my boss one evening and was told I was being taken off a case because I was too sick to go to the office and I was trying to meet a deadline by working in three hour shifts from my bed around the clock. I didn’t choose to sleep all day or choose to not get out of bed – if you get sick enough, your illness takes those choices away from you…”
This post is a continuation from Part I and covers what to say (or not say) when trying to be supportive to someone in your life that is struggling with Cushing’s or another serious illness. Part II, below, focuses on the topics of giving advice and commiserating with someone suffering with Cushing’s.
4. “Oh, I know all about how bad hormones are – I had wicked PMS last week!” or “Oh, I know all about exhaustion, my [kid, job, etc.] kept me up all night too!” You may understand how PMS or sleepless nights for work or a child may feel. That does not mean you understand how it feels to have a brain tumor pump high levels of hormones into your bloodstream and to have no idea if and when it is ever going to stop. Attempts to commiserate by comparing the two can give a person with…
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The above is the official Cushing’s path to a diagnosis but here’s how it seems to be in real life:
Egads! I remember the naive, simple days when I thought I’d give them a tube or two of blood and they’d tell me I had Cushing’s for sure.
Who knew that diagnosing Cushing’s would be years of testing, weeks of collecting every drop of urine, countless blood tests, many CT and MRI scans…
Then going to NIH, repeating all the above over 6 weeks inpatient plus an IPSS test, an apheresis (this was experimental at NIH) and specialty blood tests…
The path to a Cushing’s diagnosis is a long and arduous one but you have to stick with it if you believe you have this Syndrome.
Filed under: Cushing's, Cushing's Awareness Challenge 2015 | Tagged: blood tests, CT scan, Cushing's, diagnosis, MaryO, MRI, NIH, Petrosal Sinus Sampling, test | 1 Comment »
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