Cushings: My Story 2018 (Caution Pics)

BEFORE CUSHINGS /REMISSION

This is my story. Its not a story of remission and recovery.......its a story of fighting for my body to finally be in remission. For listening and learning. For finding my true friends and the family members that truly have helped to make it possible for me to be in remission.

 My story started many years ago. 2 Pituitary Surgeries and a BLA later and I am now in remission. I had Cushings Disease and now have Addison's. I will always have it but I am in remission now. This is my Story. How I came to know what it was, how I was diagnosed, and my path along the way. Please share this story. So more people will be educated with Cushings. Its a Rare Disease but more people are affected with it than we think. It takes an average of 8 years usually before people are diagnosed. Mostly because people have had it longer than they thought and also because of misdiagnosis. With pictures along the way. Its not the easiest thing to talk about or to show pictures of my journey. I share this with you because I want others to know about it, to help with quicker diagnosis and to educate others because I had that help through my process.

This is me....8 years ago. Its when I first started noticing my symptoms. I wasn't sleeping at night and started gaining weight. . Even though I was dieting somehow I wasn't losing weight. Well I would lose 15 pounds and then stall for months which never happened before. I started to feel anxiety and depression too but again that seemed normal as my mother had cancer and was at the end of her days. So depression, not losing weight and not sleeping seemed to be a normal thing for what my life was entailing at the moment.

BEFORE CUSHINGS

A year later those things continued but I started bruising easily and I felt like my skin hurt sometimes or was getting thin. Weird thing to think though. I ended up having a hysterectomy that year so figured all the hormone changes I started having after that was all about my hysterectomy. Weight gain started. I didn't eat junk and I was pretty active with work, kids, running around with my  husband and visiting family. I did eat popcorn at the movies but we ate pretty normal stuff at the time. I tried a couple other diets like weight watchers so you know I was eating good. I wasn't losing. I was gaining. I just didn't know what to think. I started getting stretch marks on my stomach. More than the ones I got when I had kids. I even got them on the top part of my breasts into my armpits. What was wrong with me? I felt anxiety which I had never felt in my life. I am a happy go lucky type of person. Everyone always said that I was so happy but they noticed me being not as happy. Maybe even a little pissy. Everyone chalked it up to my mother passing away.

BRUISING EASY

Fast forward to my first surgery in July 2014. Wait lets back up a little. About a year before that I had now been to 4-5 doctors to find out what was wrong with me. Bruising, Crying, Couldn't sleep, Stretch marks, losing hair, gaining facial hair, depression, anxiety and the such. Tried Depression pills for the first time in my life. They seemed to work for a month then they didn't work anymore. More estrogen. Less estrogen. Take this. Take that. Nothing was working. Then finally my last straw was when I got a call saying "We would like you to see a psychologist as we are fearful your home life isn't good because of the bruising". WHAT!!! They thought I was being beat? I was so angry by that as my home life is actually pretty fabulous and one of the reasons I didn't understand why I felt depressed. I told my husband who actually laughed as he said if anyone was going to beat up someone it would be me beating him up haha! I left that clinic and decided to go to the next towns clinic. That was the BEST thing I ever did! EVER!I set an appointment up to see Dr. Edmonds MD. I told him everything and he said can I look at your neck. MY NECK? What is that about lol. He looked at the back of my neck and said I have a buffalo hump. I told him I just figured it was being I was obese. He looked at my belly, my stretch marks and what I told him. I had gained 120 pounds in 2 years. I wasn't at home eating bon bons or sneaking food like some would of liked to believe. He said I think you might have Cushings. Its really rare though so lets get you tested. Cushings? What is that? I mean it sounded like a cute little animal or something. By now my symptoms were weight gain, muscle loss, stretch marks, big stomach, thin legs, bruising, days of insomnia, my blood pressure was now high, anxiety, depression, loss of hair on my head, chin hairs I plucked daily, tired all the time, buffalo hump,fat clavicles and I was sick all the time. I had bronchitis 5 times in one year, everyone's colds and walking pneumonia twice all in one year. I was always sick with something.

MY BUFFALO HUMP DURING CUSHINGS (NOW GONE)

 I was ordered a 24 hour urine test, and a dex test to see if I suppressed or not. He told me that I would have to suppress to have Cushings. I did not suppress actually but my 24 hour urine was elevated. Not super high but elevated. He tried sending me to an Endo here in our county. That endo looked at the two tests and said nope doesn't have Cushings. He hadn't even seen me. Tells you what he knew huh? I did a lot of research and had some help from friends in a group who helped me find a great Endo named Dr. Friedman in L.A.

GAINED 100 POUNDS (MY SON AND I)

ROUND FACE (HUSBAND AND I)

SUPER ROUND FACE (MY BFF LO AND I)

By now I knew after researching that I just had to have Cushings. How could I not? It explained everything. I was sent in for a T3 Mri (that is very important the kind) on my Pituitary while I waited to get in with Dr. Friedman Endo. My MD still believed I had Cushings. It took awhile to get my MRI but once I did I found that I had a 2mm tumor on my pituitary. Doesn't seem like much but this little mm tumor was reeking havoc on my body. My mind and well I felt my family. I didn't want them to have to have a sick mom or wife. I wanted to be the OLD me. Not the one that never slept and was always tired. I pushed myself to do more as I didn't want to let anyone down. Which therefor really probably caused more anxiety. I didn't miss any of my kids functions even though most of the time I just wanted to try and sleep when I could. I got into Dr.F and he sent me so many tests to do. I did probably 5 24 hour urines, 5 salivas, 5-8 midnight serums, and I tested and tested and tested. I tested for 4 months, maybe even 6 I don't really remember now. I had highs, I had normal...I was all over the place. The problem was I didn't know when to test. I thought  I should test when I felt at my worst. The problem was your suppose to test when you feel your best. When you have that energy at night and feel less pain, when your not sleeping. Once I figured that out my tests were coming back high, high, high. Dr. Friedman put me on Keto for awhile though to relieve some symptoms. We didn't go straight into surgery as I did have normal and highs. He is an amazing busy doctor who wanted to make sure. After two months of upping my Keto it wasn't working anymore. I got off keto, started testing again. All my tests came back high this time. I was scheduled for surgery.

1ST PITUITARY SURGERY

 July 2014 I had my first of two pituitary surgeries. I went to MD Anderson and my neurosurgeon was Dr. McCutcheon. He is amazing, personable doctor who I love. I had my surgery. They found two tumors and took them out. By then they were 4mm and 5mm and within a couple weeks was told I was in remission. My prayers were answered. I had a long recovery of taking HC. I was healed. I started to gain muscle back, lost 35 pounds total, started growing my hair back, wasn't bruising and depression was gone. My blood pressure didn't drop like I had hoped but it was manageable. I was going to be ok! Usually it takes 6 months to a year to get off HC. HC is synthetic cortisol. When they take the tumor out your pituitary has to wake up. The tumor has been the one that has been sending out so much Cortisol in your body. So no tumor....no cortisol. Thing is everyone has cortisol in their body and you need that hormone. So we take HC until our pituitary wakes up and produces the normal amount again. Like I said it takes 6-12 months to ween off of it. Sadly by month 3 I was weened. I didn't need it anymore. I should of known that was going to be a problem but I was in remission right?

ALWAYS SUPPORTING. FOREVER GREATFUL

 Month 8 post op I knew I wasn't in remission. For a couple months I had been telling myself that its probably day to day stress of getting my four teens everywhere they needed to be. That's why I am not sleeping. I started gaining weight again. My blood pressure was now sky high. I knew in my heart I wasn't in remission anymore. I told my husband but he didn't want to believe it either. Who would, right? By month 9 I went back to Friedman to retest. It didn't take me months this time. It took me a week. Every single test I took that week came back high. Some sky high. I cried. I cried and cried and cried. Surgery was set again. Back to Texas I was going to go in just 4 weeks. I knew more this time so I wasn't as scared.

 Fast forward to 4 weeks. We are loading up the car to travel from California to Texas by plane. I get a call from MD Anderson saying my insurance will not cover out of state this time. My world collapsed on that phone call. We were already set to go, we already had plane tickets, hotels, MIL here to watch all the kids. I literally felt my heart stop. What just happened. I cried and cried but KNEW in my heart there was a reason. In each tragic thing in my story it has lead to a Dr or a place that I really needed to go. God knew. He was going to stand by my side and help me. I wanted to fall into bed but instead MIL and I started researching. Dr. F told me of 3 surgeons I could go to in California. I looked up and researched them all. Asked others what they thought of their surgeries with them. I decided against all three. Not because they weren't good but they weren't for me. I contacted someone I knew who knew a Neurosurgeon in Santa Monica that I had heard good things about. His name was Dr. Kelly. I contacted him directly and told him what had just happened, that I had diagnosis and this was my second surgery. We set a date for me to come to him. He was a very thorough doctor who wanted me to see his person Endo Dr. Cohan. My husband and I got all our money back and decided to go to Santa Monica. Thank God above for my MIL who stayed to watch the kids. This was going to be my chance at remission. Everyone I talked to loved him and talked about how his staff was beyond thorough. His ratings were excellent and I just couldn't find anything negative on him. He also knew and respected my first Neurosurgeon which was important to me.

 A week later I spent that whole week, testing, seeing Dr Kelly and his staff. He wanted to give me his own diagnosis if his Endo Dr. Cohan decided I also had Cushings. They did everything within their own trusted staff which I liked. I wasn't expecting to go into surgery as of yet. I knew I had to do all these things first. Dr. Kelly was amazing. Very knowledgeable and when he looked at me said yes I look like a person with Cushings. He looked at every lab and every detail of my surgery from before. He was worried because my first surgery didn't smear with ACTH. He knew that it didn't always but that was concerning to him. I got another MRI, also cat scan of my adrenals just in case. I had another 3mm tumor but they weren't sure if was tumor or scar tissue. Dr. Kelly was so kind to my husband and I. I had one more appointment and that was to see Dr. Cohan before they would decide anything. Dr. Cohan is amazing. I seriously don't know what else to say there. Ok with my big mouth I will of course talk. He went over every lab and the new labs that I had just taken. He checked my body and saw that I had Cushings. I cried telling him what had happened to us. I should be having surgery by now and it should of been over with already. He told me with my Cortisol levels that he is surprised that I was holding it together as well. Four times he told me I wasn't crazy. Four times. Each time I felt better. Cortisol reeks havoc not only on your body but also your mental state. Makes you feel like  your losing it somehow. It can mess with your mind. I left his office having learned even more on Cushings. He was kind and listened. I had decided at that point that if I had surgery here I would be changing to him as an endo. Not because I didn't love Dr. Friedman because I do but because Dr. Cohans bedside manner was amazing and in just one appointment I had learned more than I had in awhile. Mind you....I felt like I knew a lot ha!


The next day I got the Call. I was to have surgery in a week with Dr. Kelly. I knew I was in great hands. Dr. Cohan had even told me that after this surgery I should be in remission as I have had literally the two best surgeons in the country. If I didn't go into remission though we would have other options. I had a 50/50 chance with remission my second surgery. I knew it, they knew it but I had hope. October 1 three years ago this week I went into surgery. I was sitting with my husband and actually joking. Nurses were amazed I was so chill. I knew in my heart though that I was in the best hands. I knew it. They had a team of amazing doctors who were going to be there. Even had some extras to learn. I signed off to have it be a teaching thing for others. The more people who knew the better I thought. I felt Gods hands would cover all those who were operating on me. I don't even remember recovery this time. I remember nothing about it. I woke the next day.

SECOND PIT SURGERY

 I knew we wanted my cortisol to drop below 2.0. Hours after surgery it had already dropped to 5.6. They told my husband they believe they got everything and that most of my pituitary was still intact. They were being CAUTIOUSLY optimistic. I knew it would be critical that it dropped in the first 48 hours for long term remission. My first surgery I had only dropped to a 4.3 and ended in short term remission. I didn't want another surgery. I had had two of the best neurosurgeons in the USA....this had to work. Sadly it didnt. I had that 50/50 chance and no matter the wonderful doctors that were working with me my body just wouldnt give up. In the next month I had a huge decision to make. Have my adrenals taken out and live with Addisons for the rest of my life or take medicine to slow the cortisol. After a long time of my husband and I talking we decided together on Addisons. I had a BLA 3 months later. It was the best decision I ever made!

I am in remission and will always be in remission now. I had to go through all of what I did to learn and to grow. I have now lost over 100 pounds. My muscle has grown from not being able to lift 10 pounds to now being able to lift 65 or more depending on the day. I have other issues now that I have to take care of for sure. I will have to take medicine for the rest of my life. I might not live as long as others but I know that the I will live will be the best that it can be. I feel happy again. I feel like I am in control of what I have to deal with now. My hair has grown back, I bruise less, I am still sick a lot but nothing like I was before! I have lost a lot of weight.

HAPPY!!!

VISITING LO

TAKING MY CHILD TO COLLEGE!

I used to never sleep and now I love my sleep! Addison's is a thing of its own but if I had to chose again Cushings over Addison's I would chose Addison's time and time again. You have to go through it all though to get there. A lot of my friends have been in remission after their first Cushings Surgery which was such a blessing! I have my life back! Its been a long journey but now my family has their Mom, Wife, Daughter, Friend back! If you ever want to reach out to me comment below and I will try my best to definitely reach back out to you! I am not a doctor but I have been through a lot! I am here for you too~!

YOUNGEST IS A SENIOR!

STILL SUPPORTING ME

                                                                                      Love, Ro

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