As soon as I had baby Eli, I got down to 180 pounds (from 240), but the gastric bypass failed, as I gained it all back and more in a year. I had horrible acne (saw a dermatologist), osteopenia, my vitamin D and calcium were super low no matter what, my periods began to be very irregular, and I had nose bleeds. I saw an endocrinologist and an OBGYN. I had tons of hair everywhere, especially where you don’t want to have it, like a “mustache”, horrible bruises, and stretch marks. But hey, I just had a baby so everything must be normal right?….. Then I got bursitis in both hips, one after the other, and broke my foot doing nothing. My primary care sent me to a rheumatologist who found I had carpal tunnel and the strength of a 70 year old lady. I started walking with a cane at age 31!!!!! The podiatrist sent me to an orthopedist, which led me to physical therapy. By then, I was complaining of pain and feeling weird, which I described as “going 120 miles per hour in my brain” and was just plain depressed. I was sent to a psychiatrist, because apparently it was all or at least partially in my head according to my primary care physician!!!!! I saw uncountable specialists and no one looked at the big picture. It’s like everybody was touching and describing some part of the elephant but nobody knew IT WAS AN ELEPHANT CALLED CUSHING’S!!!!
Then one day my husband was with me at my physical therapy appointment, and he pointed out that presumably because of my bad posture, a “hump” had appeared in between my shoulders, my therapist said, “Do you know about Cushing’s? I had a friend with it, and her symptoms are so similar to yours. Why don’t you ask your endocrinologist to test you for it?” So I did.
At first my endocrinologist said, “No, no, no. That is very rare, veeeeeeery rare. You don’t have that, because one, you don’t have high blood pressure and two, you don’t have diabetes.” But, I had done my homework and read about Cushing’s. I pretty much begged to be tested, so she agreed to test me. The dexamethasone overnight test was so high that she asked me if I actually had taken the pill???!!!!!! Next came the 24 hour urine, saliva test, and another urine test, all of which were positive for Cushing’s. Then came an ACTH and cortisol in blood and everything indicated Cushing’s. My cortisol was sooooo high! She finally sent me to have a CT of my adrenal glands. The results showed a mass on my right adrenal gland.
At this point, I don’t know how to explain to somebody the relief I felt knowing that I had a mass. It is definitely very strange how you can be relieved with the news of a tumor, but for me it meant 1 illness with 15 symptoms and not 15 illnesses. It was like finally a true answer; palpable, physical and real!!!! And best of all FIXABLE!!! I felt like finally screaming and telling the world: I was NOT making it up!
I had a successful surgery. They lacerated my liver a little, and my wound got infected, but in general terms it was OK. I was told that everything from then on, was piece of cake and I would get better. How wrong and what a lie!!!! They forgot to give me steroids after my surgery, so the first day was heaven and the second day was awful. They figured out that I needed hormone replacement and gave me prednisone. Given the history of mistakes, disbelief and the fact that I was this endocrinologist’s first Cushing’s patient, I changed endocrinologists. I am now being treated by the best Cushing’s endocrinologist in the state of Oregon. Thank God! She changed the tapering plan, explained everything to me, made me aware that the fight is not over at all and created a plan and a team to go through this. I can’t be happier with this plan, it makes sense!
But I am struggling as all of you are aware. I am fatigued, I am not losing weight, rather I am gaining it. I’ve been told, it is because the prednisone dosage that they have me on is actually higher than what the tumor was giving my body. It makes me hungry and I am trying to eat very healthy, but it is discouraging. I am weak, I feel like sleeping all day, like a zombie. I have insomnia during the night, but remember I have a 14 month old that just learned to walk, so resting during the day is a joke! I am in so much pain everywhere, and my mental status is all over the place. One day I felt so sick and down that I thought “very seriously” about taking my own life so they adjusted my dosage. I just want to feel like I am getting better and not worse, but I guess I have to go through this in order to feel better.
When I found this website and saw the amazing stories, especially the pictures, I got hope again. I am believing in light at the end of the tunnel, but I would appreciate any support you can provide me. I cry every day and blame myself for being weak, for eating, because I feel like I should eat like a rabbit knowing what I am dealing with. I feel like a burden to my loved ones. I thought surgery was it, and here I am.
But look… I believe also that I am a warrior, I know I can do it. I have been through horrible things in life and I made it alive! I am looking for support. If I can get some support or even just share my story and help just one other person, then all of this is worth it! It’s tough, this illness is ugly, unfair, and just plain sad, but I want you to know that we can get through this, we are stronger than this illness and we have each other for support. Actually just writing this makes me feel better, like I am not the only one and that there is help that will not judge you. I promise, please feel free to contact me if you want a “cushie” friend and thank you for getting to know a little about me. I will keep you in my good vibes and prayers always!
Newsletter: Summer, 2014