Monday, March 9, 2009

Jen (AuntieNoWay) , adrenal, steroid use bio

In 2002 I was an Air Traffic Controller in the United States Navy. I had graduated top of my class as the honor graduate and I was the only female in my class. I had also been one of 4 people and the only female, to win an award upon completion of boot camp and it was presented to me by the Master Chief Petty Officer of the Navy. According to all my evaluations I was "a rising star" and "expected to do great things". I was stationed at Naval Air Station North Island which is a base located on Coronado Island across the bridge from San Diego in southern California. Things were going well for me and then all of a sudden it all fell apart. I started to get very ill, I gained an obscene amount of weight in a short period of time, suffered from insomnia, anxiety, uncontrollable bowels, constantly irritable, excess facial and body hair growth, stopped menstruating, paper-thin skin that bruised to the touch, brain fog, a round face, sunken in eyes with bags under them, and though I went repeatedly to medical, they told me and I quote, "Quit smoking, quit drinking, dump your boyfriend, and go to the gym" and that would resolve my problems... Well it didn't, I got worse. It affected my work and every aspect of my life. I was constantly being told that I was not sick, it was all in my head and that I needed to be seen by psych and be put on anti-depressant medication. Being in a career that was mostly men I suffered constant comments and criticisms and even ate my lunches in the women's locker room because I was embarrassed and ashamed of my appearance. I was treated even more poorly by the women I worked with and my superior officers who were cruel and didn't take my symptoms seriously. When I really started to get worried about my health was when one day I was in the shower and looked down at my stomach and noticed these horrible purple marks all over my body. They had just appeared over night. I went immediately to medical and asked to see a doctor. I showed her the marks and she looked at me like I had a screw loose and said, "Um, those are from being pregnant. Have you ever had children?" To which I answered, "Not that I am aware of! You have my medical records, you know I have no children! What is going on!" My mum, who was worried about me, came down to visit me from Seattle and when I picked her up at the airport she didn't even recognize me I had changed in appearance so much.

Finally, a doctor by the name of Lt. Graves showed up at North Island right out of medical school and took one look at me and was certain I had what was called Cushing's. She had remembered reading about it in med school.

She saved my life.

All it took was one blood test and I was diagnosed. I had a tumor on my left adrenal gland that was causing my left adrenal gland to over produce the hormone cortisol.
I was diagnosed but they waited 2 months to get me in for surgery and during that time my weight jumped dramatically from 180Lbs to 239Lbs and I was sicker than ever. I was now so large my uniforms no longer fit and when I filled out a request signed by my doctors to wear civilian clothing it was denied by my chain of command. I finally had to submit a request for maternity uniforms and had to wear them to work and everywhere on base even though I was not pregnant. I smoke cigarettes so every day I had to suffer the glares and threats of other members of the military who didn't know my situation saying that I was a child abuser and a horrible person. I It was so hard and really took a toll on me. It didn't help when I told people it wasn't a baby it was a tumor. They thought I was a bad person. I didn't want to get up in the mornings anymore. I wanted to hide under a rock and disappear.

Finally in August 2003 I had an adrenalectomy at Naval Medical Center San Diego and they took out the left adrenal gland and the tumor. The surgery was supposed to take 4 hours but ended up being over 9 and there were complications. Another team had to be called in due to the trouble my surgeon was having and the fact that I was so filled with this hard lard-like fat they had difficulty getting at my adrenal gland. I was treated horribly in recovery, and unless my mother was there I was ignored by the staff and luckily I was sharing a room with an officer's wife who was able to summon the nurses for me because they didn't respond to my call button when I needed help to get to the bathroom. It was horrible. Two days after coming home from the hospital I had what I thought was a heart attack and I actually was in so much pain I told my mother I was dying. She called 911 and the paramedics came. They dropped me twice getting me on the gurney and were rude and made comments about my weight. I was rushed back to the hospital to find that I was almost septic from all the pain medication I was taking.

I also had hernia repair surgery in February 2004 and now I have titanium mesh secured by titanium screws covering the entire inside of my abdomen. It really freaks out x-ray technologists if I don't tell them beforehand.

I started to get better and the weight was just falling off but then I stopped recovering and began to decline in health. The Navy doctors still found nothing wrong and told me I was "malingering" but my mother knew there was something else going on with me. I was seen by psych again and placed on anti-depressants again. They tried all of them but nothing helped. The Navy at this time was now trying to get me discharged because according to them I was no longer fit for service. So I was not only fighting to get treated I was fighting to prove my medical situation to a board of officers who had no clue what I was actually going through.

We went to see Dr. James Webber in San Diego and he diagnosed me with Hashimoto's Auto Immune Thyroiditis. He also found that my right adrenal never started pulling it's weight and diagnosed me with Adrenal Insufficiency as well. He started me on Armour Thyroid and Hydrocortisone. I started to slowly feel better.

So after years of trial and error of medications and going to a ridiculous amount of different doctors, I was finally starting to feel better, but the damage caused by the rapid weight gain and weight loss turned my skin into a stretched out mess! I was promised, and its written, in my medical record that I would receive re-constructive plastic surgery to repair the damage caused. But after I had an abdominoplasty and umbilical hernia repair surgery in 2005 the Navy decided that I was unfit to continue my contract and tried to discharge me without any disability.

I fought them tooth and nail with the help of my new division officer, Lt. Candace James (my hero), but still ended up with a pathetic 30%. I took my records and ailments to the VA and they gave me 70% which is better than 30% but they still didn't include all of my issues... I will continue to pursue all avenues to rectify this situation. I did not go to war in the traditional sense over in Iraq, but I feel that I fought my own war and my enemy was not only Cushings but those very people who were supposed to be keeping me healthy and safe. It is a war for my health and my life that I am still fighting.

When I moved back home to Seattle in late 2005 I had to find a new doctor and I looked all over. I went to many who actually had the nerve to tell me, "Wow, you sure have a lot of issues, are you sure you actually have all these things?" Having retired military insurance is affordable but most doctors, don't accept it, as they don't get enough money from the insurance company. So it took me years to find doctors that would see me with this insurance. Seeing a traditional Endo now instead of Doctor Webber I was taken off the Armour Thyroid because my new doctor doesn't agree with that method of treatment and placed on Levothyroxine and Cytomel. As well as adding Fludrocortisone and changing my dose of Hydrocortisone. I take Lonox and Hyoscyamine for my IBS. I had gone to the ER when I had an IBS episode which they misdiagnosed as shingles of all things, even though I had no symptoms of it, and when I gave my Medic Alert Card to the woman who checks you in, she said to me, "I'm not writing all this down! This is too much! You can't have all these things!" I explained to her that she had a copy machine and didn't have to write it all down. She could just make a copy. But the bad treatment continues everywhere I go it seems. Even with a diagnosis and surgeries completed, they still doubt my illnesses. It makes me sick.

I am now retired, and when I tried to get my plastic surgery through the Naval Hospital they told me I had to "pay out of my pocket" because I was no longer active duty... how convenient... So I submitted it to my insurance time and time again and they kept denying it, saying "it was cosmetic and I could live without the repairs..." well yes, but not comfortably, and if they had paid attention to my symptoms and not ignored my health conditions I wouldn't have gained 100lbs and needed re-constructive work done in the first place!

So thankfully my grandmother and parents made it possible for me to begin the repairs November 2007 and I had part two July 31 2008. I was finally back down to size 29 in jeans and I was feeling great! Although its not all fixed. I have had every possible treatment for my stretch marks that are up to 1/2 inch deep in places, making me look like I gave birth to a litter. I look like I have been mauled. Nothing has helped from laser treatments, to supplements. I wish that they had payed attention to my symptoms and they never would have happened.

In November of 2008 I started working for UPS as a seasonal driver helper for the Christmas rush and I was on my feet 14 hours a day hauling packages up and down driveways and stairs and it was really strenuous and active work. Everyone I worked with lost anywhere from 10-25 pounds this peak season because we were so busy and when I went to put on my new jeans my mum had bought in October for my birthday I found I couldn't pull them over my hips. Thinking this strange since I was so active and had just had a ton of reconstructive surgery done, I went to my primary care physician who weighed me and I found I was up to 171lbs. Now I know that that is not acceptable for me. I was weighing between 155-160lbs after surgery and swelling and to jump up like that was not okay. It should have gone down to 145-150lbs after the swelling decreased and since I was so active. She told me I was being silly and even knowing my history with Cushings said to me that all women gain weight as we get older... the same stuff I heard back in the Navy when no one was listening to me! I am 28 years old! I hardly call that "getting older". I was finally able to get in for an appointment with my Endo here in seattle in February 2009 and when I got on the scale I was 176lbs. I had gained 16lbs since I saw him pre reconstructive surgery, which included liposculpture so I shouldn't weigh more after the surgery than I did before it. My face has started puffing out and I have dark circles under my eyes. My skin is dry and cracked on my hands and feet and no matter what kind of shampoo I use, I have flaky dandruff that wont go away. I am irritable and anxious. I am lethargic and exhausted all the time. I never feel good and I wanted him to tell me what was going on. He ordered blood work and a 24 hour urine test which I completed and I am now waiting for the results to come back.

When I was in the Navy I asked about a possible reccurence and they told me again and again that I couldn't get Cushings again but the more I research it and talk to people the more I feel that they didn't have a clue what they were talking about. My two scenarios are possibly a reccurrence of Cushings or my right adrenal gland is finally starting to work and I and I am having Cuhings-like symptoms due to too much steroids. Right now I am so frustrated and worried. I don't remember being 23 or 24 due to all my medication and the fact that Cushings ruins your memory. I know Cushings took my 20s and I don't want it to take my 30s as well. I have recently applied to be an Air Traffic Controller for the FAA and I don't want a relapse to ruin my chances of this wonderful career again like it did back in 2002.

Since it didn't have my other diagnoses listed above I thought I would include them here. Maybe others have had the same issues I have? Maybe I can help someone?

History of Cushing's Syndrome, Adrenal Insufficiency, Hypotension, Hypoglycemia, Hypothyroidism (Hashimotos Disease), Hiatal Hernia (GERD), Abdominal Hernia Repair, Umbilical Hernia Repair, Urinary Tract Infections, Irritable Bowel Syndrome (IBS), Kidney Stones, Hematuria, Insomnia, Chronic Back Pain, Neuropathy, Motion Sickness, Tinnitus, Mycoplasma Pneumonia, Sacroilitis. I was a very healthy person before I got sick... I don't know why this happened to me. I want it to go away. I want my life back.

Thank you for letting me tell my story. It has been a long hard journey and a very lonely one. I am glad that I am now able to share with others who actually get it and know what I have gone through. I will keep you updated as I get my results.


Email Jen

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Thursday, March 5, 2009

Jenny, undiagnosed bio

It all started when I got my first period in grade 8. Ever since, my menstrual cycles were very irregular, coming every 4-5 months (Once I skipped 9 months). Despite this, I was happy and felt healthy, exercising on my tredmill everyday and eating a healthy diet.

In 2005, my parents were concerned about my irregular periods so I went to see a GP who then got me a referal to see a gyno. The gyno told me that it's perfectly normal to have irregular periods (then WHY she prescribed me birth control pills, I'll never know). THIS is where the symptoms started popping up- right after I took Yasmin birth control pills for about a month. I was moody and gaining weight so I stopped taking Yasmin.

I then tried to take the weight off by exercising, but something was different. The more I exercised, the more I gained weight. I was constantly bloated and my cheeks were getting bigger. I drank more water, thinking I was dehydrated, but that wasn't it. If anything, drinking water made my edema WORSE.

I started getting significant changes to my bowel movements where I went back and forth from severe constipation to severe diharrea. A gasto. told me that I have a MILD form of IBS?! He did nothing but a routine checkup and told me to eat more fiber. Even though I never changed my healthy diet regime, I ate more fiber (which made no difference in my bowel movements).

I went to countless GPs who got me to do countless blood and urine tests which all turned out normal. I was gaining weight like crazy and my face was getting bigger. I was CONSTANTLY bloated and my body started to change shape. My legs and arms were noticeably getting thinner, and my torso looked like it was getting shorter and fatter. I was slowly forming a "double chin", and my skin got ALOT darker and dry. Now, my face is always oily and my hands are constantly sweating. I still have irregular periods and "mild IBS".

I'm noticing that I'm falling deeper into depression as I am getting more desperate to find a diagnosis. Hairs are starting to grow on my face, and my hair is very dry and coarse. My jaw seems like it's growing wider (probably my jaw bone). I'm starting to get shooting pains in my head area which gets worse when I lie down. I can't concentrate in school, and I feel like dying is better than living like this.

In my three years of researching my symptoms online, I am certain that I have pituitary Cushings Disease.

If there's anyone in Calgary or anywhere in Alberta that can help or want to share your thoughts, please e-mail me.

Email Jenny

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