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Karen's Story

The old me: I used to be very energetic, I used to be able to swim for an hour non-stop without taking a break, I used to be very alive socially, I used to enjoy being around people, I used to work very hard and began working from 15 years of age (at one point in college holding down 3 jobs and while in Japan holding down 2!), I used to WANT to take care of my body and keep myself well-groomed, I used to LOVE cooking, I used to keep a neat home when I was living in Japan, and in general LOVED to exercise, sing, and dance.

I was unofficially diagnosed for having Cushings Disease in September of 2006 by my Endocrinologist, and officially diagnosed on August 29th of 2007 where my neurologist set me up for Pituitary Surgery on October 1st, 2007.

Along with the official diagnosis and the date for surgery set, I have a mixture of feelings: happy, vindicated, validated, relieved, hopeful, scared, and ANGRY. I am ANGRY at all those people who never believed in me from the first time that I started to complain about my health.

Things started changing for me in 1994. Each year I was gaining more and more weight. I remember not being able to figure that out as I was VERY physically active and ate normal volumes of food as well as eating what was healthy or basically "in moderation". The weight gain was weird, but I brushed it off. In 1996, I started having severe panic attacks, very mild depression, and always HIGH anxiety. I had heartburn, but didn't even know what heartburn was at the time, so I brushed that off as well. When I came back from Japan in 1998, my mother barely recognized me. I lost weight for a while, and in 2001, I was gaining weight again and began developing new physical symptoms. My depression was getting worse. My libido had died. In the late summer of 2002, I took two leaves of absences from work. I had a combination of health and psychological problems that was interfering with my ability to function at work. It got so bad that I had quit my job. My social life had also taken a dive. I only very rarely left the house. I ignored most phone calls and knocks at the door from friends. I didn't know what to say to anyone because I didn't know what was wrong with me.

My BIGGEST PROBLEMS: I slept about 12-14 hours a day, had constant pain in my ribs, was feeling nauseas everyday, had awful headaches everyday (they were so bad that I had to take 18 Excedrin to just get some relief), only got my period about 2-3 times a year, I had chronic Hidradenitis Suppurativa/chronic boils, was growing fungus on my body in three different areas, was constantly feeling hot and sweaty, was very depressed, had chronic heartburn, and had to urinate every 15 minutes to an hour while awake and roughly 4-6 times during the night. I was a complete mess and still am.

Why am I ANGRY? During that time, I was told that I was lazy, looking for attention, and a whiner. My brother said, "You're not 18 anymore!" (meaning that I should be working and not "playing around" all day). My sister in law accused me of taking an "extended honeymoon". When I was working, one former supervisor of mine had told me that I better lose weight before my wedding date. During every break I got at work, I slept on the sofa in the lounge. One day a co-worker of mine whispered to another girl in the lounge, "She's always sleeping there - it's so annoying". When I started gaining weight, a rumor had been spread office-wide that I had been smoking while I was pregnant! This blew me away because I've NEVER EVER been pregnant!! People suddenly started approaching me with "congratulations on your baby". Again, I was *NOT* pregnant! :( However, nobody believed me because I had "Central Obesity". Everytime I went outside for a cigarette, I was given dirty looks because "You shouldn't be smoking while you're pregnant!" LOL

I basically had gotten to the point, one day, that I couldn't bare to look at another person. Not only by co-workers, but by my own family members, I was constantly being belittled, and not once was I taken seriously. My psychiatrist did, though. He had encouraged me to go on SSI and gave me the paperwork to fill out. However, I was so depressed, I didn't have it in me to do it. This angers me because there are actually people ENJOYING THEIR LIVES while living off the government - something that I was accused of "wanting": to live off the meat of another. Shame on those people!

While I still had SOME energy, I visited my PCP who diagnosed me with Diabetes Type II and put me on 2000mg of Metformin per day. Prior to my Diabetes diagnosis, my brother had said, "Oh, you probably don't have Diabetes. Everyone's blood sugars are incorrectly calculated on the first blood draw....". My mother had been in disbelief as well. When I DID get diagnosed, everyone was like... "Oh". (My guess is that people WANTED to believe so badly that I was making things up to just get attention.)

I felt A LOT better after having started the Metformin back in May of 2003 when I was diagnosed with Diabetes and GERD. So, obviously that was *NOT* a mistake on my doctor's part because half of my symptoms had gone away!

Unfortunately many of my symptoms and MORE came back very gradually 6 months to a year later (I don't remember, exactly). The progression was very slow - which probably explains my ignoring a lot of odd ailments here and there. The only time I would really question my health was when things got to an unbearable point. Psychologically, by this point, I had tried a few mood-stabilizers and almost every anti-depressant out there. I never gave up on trying different types of medication. I didn't want to get "high". (Most people don't believe in "Psychology" and think that people just take medication to "get stoned".) I just wanted the suicidal thoughts to stop and to be able to function like a human should be able to. Is that too much to ask for??? I was still physically sick, but thought that "this is just the way things are". I found another job in May of 2004. I went through another downward spiral, and a few months later and went from a full-time schedule to a part-time schedule at work. I actually had to lie to my brother's family so that they wouldn't think "I was being LAZY and not acting my age" AGAIN. So, a lie was going to keep peace in the family. My mother, at that point, was very supportive.

Fast forward, I made yet another attempt to WORK a full-time job - this time, at a different company (long story). In September of 2005, I was hired. I had to go through training for this new job. Poop hit the fan instantly. I was complained about for "taking too many trips to the bathroom". People had already started to talk about how weird I was. One girl directly said to me that I looked un-groomed, and asked me if I was depressed. I told her that I was being treated for depression. She then told me to start grooming myself better, fix my hair up, wear better clothes, and wear make-up. At first I was offended by that, but took her advice. That lasted about 2 months. My depression and anger were getting worse, and I just didn't care anymore to "be pretty" at work. I was falling rapidly into severe hopelessness because months and months following training, I STILL wasn't able to do my job correctly because I was too slow. (I still have a problem multi-tasking). I had been reprimanded, warned, and re-trained time and time again to no avail. I often went home crying after having felt humiliated in front of my co-workers as they watched me being re-trained, ad nauseam. I was feeling worse and worse everyday and taking too many sick days. Half of my co-workers couldn't "get me", the other half (thankfully) were supportive and nice to me.

To make a long story less long, my PCP and my GYN diagnosed me for having PCOS. My GYN noticed that my Prolactin levels were too high and had me get an MRI which showed that I had a 4.5mm (left side) pituitary tumor. My GYN had also found pre-cancerous cells on the lining of my Uterus and some cysts on my right ovary which were all removed surgically via (D&C/Hysteroscopy). Soon after, I was said to have Gallstones and to see a surgeon that told me I can wait on that or until I have a full-blown attack. I spent several days a week on a weekly basis calling and seeing doctors. I was getting sicker and weaker to the point that I eventually had to quit my job. However, three months later, I did find a job where I could work from home without the close scrutiny, the judgments, and WITH the freedom to pee and take sick time off when I needed to. I started FEELING 25% BETTER after working from the home. During the Fall of 2006, I was aggressively seeing all sorts of doctors and getting all types of tests done NON-STOP. I got to a point of burnout. And from November of 2006, I gave up on going to the doctors. I felt hopeless, tired, apathetic, and just wanted to focus on my job and my "pretend" social life online. I didn't want to see another doctor, and I guess since I had already been unofficially diagnosed as having Cushings, I had been in denial as well. One year went by, and I did nothing.

Finally in August of 2007, I decided to (with the encouragement of my mother who started to believe in Cushings) see my neurologist who then handed over the official diagnosis and scheduled my surgery.

The most supportive person who has stood by my side for the last 6 years without judging me, calling me names, talking behind my back, and without belittling what I'm going through (even through our darkest moments) has been my HUSBAND. If there is a Greater Being up above, I do thank him/her for my husband. I don't know what I'd do without him. He truly cares about me, and knowing this gives me a reason to live and a reason to fight to re-gain my health and have that ZEST for life that I used to have Pre-Cushings Era.

I would have to say that the WORST part of disease is the cruel treatment from others, the disbelief, and the "minimizing". Cushings takes a toll on us emotionally, and mean people with their refusal to take you seriously makes this the most devastating disease there is just because it's the most misunderstood!

All of my symptoms:

The medication I'm currently taking: Metformin, Glyburide, Chantix, Zicam (as needed), Motrin (as needed), Lexapro, Oxycalm, Xanax (as needed), Klonopin (as needed), Nexium, and Propanolol.

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