Be Your Own Health Advocate

Staying healthy involves more than just eating right, exercising, managing stress, and quitting unhealthy habits like smoking.  It also involves being an informed patient (by becoming health literate) and standing up for yourself if you feel that you’re not getting the treatment you need (by being your own health advocate).  Jennifer Ingersoll, a DMH employee at Tewksbury Hospital, learned the importance of both health literacy and health advocacy first hand when she experienced a rollercoaster of a journey that ultimately led to her being diagnosed with the endocrine disorder Cushing’s disease.  She has graciously agreed to share her story with other state employees to encourage them to become their own health advocates by using resources such as WellMASS to receive a proper diagnosis and treatment:

“In December 2010 I was finally diagnosed with Cushing’s disease, and I received a life-saving brain surgery in March 2011.  I had a tumor on my pituitary gland that caused extreme weight gain, high blood pressure, skin infections, acne, joint pain, facial hair, depression, headaches, and bone degeneration.  I had suffered symptoms for years only to be told I needed to exercise more, eat less, and that my facial hair was familial.  I gained 30-40 pounds in the three months prior to demanding that I be referred to an Endocrinologist.  I knew something was desperately wrong with me.  I was only eating 900 calories a day and exercising…and I was gaining weight!  I would cry at night in pain and short of breath from the pressure my abdomen was placing on my chest.  I looked like I was pregnant with multiples.  I can recall talking to my nurse practitioner about Cushing’s and the fact that I had symptoms several years prior….only to be laughed at.  That was impossible to her.  Only 1-5 people out of a  million are diagnosed per year with this disease.  I finally demanded to see an Endocrinologist who also thought I was just depressed, or that I had Polycystic Ovarian Syndrome…until I voiced my concern about Cushing’s and he agreed to do the testing.  It took months to get diagnosed.  Finally I was validated.  I was not crazy!  People always attributed my symptoms to genetics or stress!  Wrong!!!  I was then sent to the MGH Neuroendocrine unit, who also confirmed my diagnosis, and I was whisked off to surgery to find the source ( a tumor) somewhere in my body.  I then had an invasive procedure called Petrosal sinus sampling that confirmed my ACTH was 10900 [Adrenocorticotropic Hormone – normal levels are between 9-52 pg/mL] on the left side of my brain.  My tumor was on the pituitary gland, but the MRI confirmed it was on the right side.  However, they wanted me to wait a month to see the surgeon!  I decided to email the surgeon in desperation and told him my story…I needed help desperately!   Thanks to my email I was scheduled to see him in a week and I was then scheduled for brain surgery within another week.  I was losing my life and death was a possibility.  My 3 boys at home needed their mother. 

The surgery I had was called Transphenoidal brain surgery…pretty scary , but I was out of the hospital in a day, with restrictions.  I was warned “you will feel sicker before you get better,” and it was true.  I was not allowed to bend, lift, or use straws; I lost my ability to taste food;  and I was in horrible pain throughout my body.  I then suffered bleeding near the surgery site and ended up at Mass Eye and Ear, where I had two separate sinus surgeries within 24 hours.  Additionally,, my Adrenal glands did not work at all……making my body’s ability to cope with stress impossible.  This is called Adrenal Insufficiency.  I now am maintained on medications to supplement my low cortisol level.  I fixed one problem to get another, but I was determined to manage and I am.

 My recovery has been very long….. I am here though.  I am a fighter!  It has been more than a year and a half now since my surgeries.  I have lost 79 pounds and I still am recovering.  My Adrenals only partially function and I take daily doses of Prednisone.  I have been back to work for more than a year and continue to monitor and fight for my health.  All I can say is…. you know your body better than anyone.  Always be your own advocate!”

Jen Ingersoll before and after

Jen Ingersoll before and after

 I met with Jen the other day, and she looks great.  However, she is still struggling to return to the way she felt before she got sick.    I hope her story can encourage you to be conscious of your health, and to seek treatment when things appear to be wrong.  WellMASS provides all eligible employees the opportunity to take a free, confidential health assessment that provides a snapshot of your current health and can help guide your future health goals.  The Assessment takes 10 minutes to complete and is an excellent place to start taking control of your own health.

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