Unwritten

Today marks 18 weeks POST OP (Just about 4 months&1 week )!! Just got my computer back up and running and found a piece of my journey I had typed a WEEK BEFORE surgery:   I’ve been mocked, ridiculed, told I was crazy and all though those things have hurt; I’ve never let them keep me down.  After all these years, I finally have an answer.  It feels so wonderful, but at the same time causes shock to my core.  Right now I’m dealing with grieving what I’ve lost.  I went over 15 years without a diagnosis.  I’ve heard a lot of things a patient should never hear.   I heard I was nuts-- that I should just relax—nothing’s wrong with me, they can’t find ANYTHING. I have had great support from some family and friends, but have also lost many along the way.   I’ve always fought to be “ME”.  My life is so much different from the way I planned it to be.  I had so many dreams and ambitions.  As much as Cushing's has taken from me I’ve learned to value and appreciate every blessing in m

For those following, I just wanted to keep you updated! On Tuesday April 2nd 2013, I had a biopsy done of a nodule they found in my thyroid. My little brother came to my house to help me with the kids so Matt didn't miss work. The nodule was in the back of the gland so they had to jab a needle in and press and jab jab jab 6 separate times. It was extremely painful,  and I was so shook up I had my brother in law pick me up because I was to upset to drive.  My throat hurt for over a week. Thankfully we've learned results were benign. I had a phone appointment with Dr Friedman on April 13th & he has ordered extensive testing both in May&June for me. He calmed my fears and told me he firmly believes that all be feeling much better as the months go by and we get some of these things fixed: 1. Severely low Vit D. Some people can do high doses once in a life time, and some half to stay on a considerable amount for a lifetime...it's something wi

By this point in time I was feeling so so desperate, as if I wasn't already before---fighting for so long without a diagnosis, finally having one and no one will offer treatment!  To date I've been turned away or ignored by 5 different neurosurgeons!  Most of which could see the tumor, but didnt agree with a cyclical cushings diagnosis ---because they didnt believe it existed.  Hello, here I am!!! I'm proof!  One test I'd pondered for a while, but never had anyone order because of how invasive it's known to be, is called an IPSS--INFERIOR PETROSAL SINUS SAMPLING. I made an appointment with my PCP and sat down and told him how frustrated I was and that I really wanted this last test ordered so I could have more "evidence" of cushings and that this test would help determine which side of the gland the tumor was on.  My dr said if he could, he would order it, and by me coming and asking him for this test, it really shows him how much I must suffer. N

My name is Meagan Maureen Jenkins I am 26 years old.  I am married to my best friend Matt and together we have three beautiful children.  Owen, age 6. Isabelle nearly 5 and our baby is already just over 2.5!  Matt and I met the summer of 2004, at Kohls Department Store in Madison where I got a job as a cashier after losing my job as a CNA because of health problems, which I now know where and are related to my Cushing's diagnosis.  Before I had the painful symptoms of Cushings my life was very different.  I spent a lot of my free time running around, swimming and playing.  I was involved in sports and loved playing “house” and dreaming of the life I would one day have when I built a family.  I loved running, I use to run 3-5miles a day and ran in many different races!  I spent time volunteering at my church, and helping elderly neighbors anyway I could.  I spent many weekends feeding the homeless and bringing them things they needed to survive living without a home.  My pass