Friday, July 4, 2014

Hug your Cushie: What is getting an MRI like?

I am happy to introduce my new series, Hug your Cushie. Life as a Cushie is rough. You see it happen to your loved one or friend. You drive them there. You are there for the lab results and surgeries. Yet, you don't really experience the difficulties first hand. I want a way to show caregivers just some of what we experience. What if this were you?

This is not a "woe is us" series. This is a "warriors keep going no matter what series." It is important that caregivers and friends understand this, I mean, really understand the toll this takes on a patient.  I hope that after being a Cushie for a few moments that you understand the physical and emotional challenges we face. Be sure to Hug your Cushie today.

Hug your Cushie: What is getting an MRI like?

I found this informational video intended for patients who need to undergo an MRI.


I patiently watched that video. It all sounds pretty doable. Pleasant even! Well, why do I associate this machine with a torture chamber?

I have been getting MRIs every six months for seven years now. I used to convince myself that it was no big deal. It was, after all, just what had to happen as a patient with pituitary tumors.

Stoic. I'm always trying to be stoic.

The last time I went for my pituitary MRI with dynamic protocol, I asked my dear friend Melony to tag along as "moms play date." I promised her dinner afterwards, but one condition:  she could not make me laugh in there. Melony held on to my leg the whole time. At the end, she asked, in tears, how I can stay so strong every time?  I told her that I really am not! I hate that machine! I hate the noises! I hate the head contraption that keeps my neck from moving. I hate lying in a tube where my whole body is touching the bottom and sides of the tube, with only four inches of space between my chest and the top of the MRI tube. I hate MRIs. There. I said it. 

I don't have to be brave and mask all the challenges of being a patient. However, I will continue to get MRIs, as my treatment plan requires me to do, for the rest of my life.  I will always look forward to getting out of those tubes and on to more magical sounds.

Some awesome person recorded the sounds of an MRI for 35 minutes. Click below, lean way into your speakers, even put your ear right on the speaker. Then stay put. See how long you can stay there before you pull away from the clicking and hammering sounds. Then remember, we Cushing's patients can not stop and move the noise. We have to float our minds off to a special place where we joyfully pass each minute in peace and quiet.


If you like what you see here, share the blog. Please do not lift links or images then share them. Blog authors spend time away from family, time when they are sick, to make these posts. Hug a Blogger. 😊

Thursday, July 3, 2014

My Quest by Care360

Back in 2011, I bragged about how Quest Diagnostics gives patients their test results through their app. I happily study each report to understand my disease and hormonal levels.

I have been disappointed, however, that when I arrived in California in late 2011, I was unable to access my results in a timely manner or in an app!  California law prohibited Quest from releasing these results to me. Since then, I have struggled waiting for my doctor to release results to me.  Why should I need to wait? I need these numbers to adjust medications quicker than a doc can return the phone call.

Well, I paid a bill online with Quest Diagnostics, and I see a new message. They have a new app as their patient portal.  Instead of Gazelle, we have MyQuest by Care 360.  The system recognized my old user name and password. I saw this message when trying to request lab results:

Based on California law, Quest Diagnostics is delaying release of test results for 14 days to allow your physician time
to review your test results.

Hot diggity!  This is something new!  Oh, I have so much relief now knowing that the minimum I will wait is 14 days after the date of labs.

Well, this day just got a little sweeter.


Why is this a big deal?  Patients are becoming more confident and informed consumers in the medical marketplace. In addition, those of us plagued by chronic illness need every bit of information about our case at our disposal, to pass along to other medical providers as needed. In addition, patients will research ever line item on the lab report to ensure they understand the result from each test. Doctors are notoriously for telling a patient the results are normal.  Many times, even when cortisol levels are tested and abnormally high, doctors dismiss them as normal.  No Cushie should have their life and diagnosis delayed because the doctor misread or didn't value that abnormal results, or even still, *know what to do with this abnormal test*!  Patients must keep a file and stay informed.  Know one will care more for your health than you.


Tuesday, July 1, 2014

** Measure cortisol on a smartphone **

The Cushing's community has bemoaned the absence of any cortisol-measuring device for the patient's use. Now after my bilateral adrenalectomy, it is critical that I know what my cortisol levels. I must adjust my hormone replacement, avoid taking too much and giving myself Cushing's, and worse, taking too little and suffering adrenal crisis. We are desperate for a way to measure cortisol levels outside a lab setting. We need tests results quickly.

Here is the recent announcement for a cortisol-measuring device.  After this gets FDA-approval, it will save lives. Such a burden will be lifted for me, my family, and the entire Cushing's community.

""When cortisol levels are overlooked too many people suffer and die because of excess or insufficient cortisol," said Joel Ehrenkranz, MD, director of diabetes and endocrinology at Intermountain Medical Center, and lead researcher of the project.

To help solve this problem, researchers developed a simple saliva test that uses a smartphone and an attached device that inexpensively feeds the results of a saliva test into the smart phone. An app then quantifies and interprets the results of a salivary cortisol assay and gives results in five minutes at the point of care."