WONDERFUL news from our former trainer and client, dear Julia, who suffers from Addison’s Disease. She had wonderful Misty, who detected her cortisol levels consistently, but Julia had to rehome Misty with someone she knew for an entire year because her apartment complex would not allow her Service Dog – despite all the information we sent them. They are together again!!! Julia writes:
Hi Service Dog Express!
I just wanted to update you on Misty and I. She’s back home with me after battling the rental company. I finally got a doctor to sign the form they required! After being a year apart, she remembers everything about me, my husband, and our two kitties. She also very in tune with my 5 month old daughter! Not only does Misty still alert me when my cortisol is low, she now will wake me up if she hears my daughter crying on the monitor. She’s gotten a lot better about scratching my arm when alerting. Now she just grunts and licks my face!
I also wanted to share my story and my fundraiser for Addison’s Disease! Please feel free to share on your Facebook page my story, fundraiser and picture of Misty May. Thank you guys for everything you do.
“To make a long story short, I’ve had Addison’s Disease for 2 years now. I’m 23 years old and feel like a 70 year old woman. Now that I know everything there is to know about Primary Addison’s Disease, I can truly say that my adrenal glands have been dying my whole life. I’ll start out by explaining my tiring childhood.
December 1991 – September 2012
All my life most people have asked me what it’s like to be a twin. My response was always the same; what’s it like to not have a twin? Growing up with a twin was different and kind of hard. People liked to compare us often. My twin was considered the “advanced one”. She was very driven and enthusiastic about school. She enjoyed learning, orchestra, and sports. She was the student that would get outraged about getting anything but an A+… But me? I was the completely opposite. I did enjoy orchestra, yes, but I wasn’t trying to become a professional violinist. School was never the place I wanted to be; I slept through most of high school and got excited if I got a D- to pass the class. My mind often wandered and I doodled in my notebook.
When I hit high school, my mom and I decided that maybe going to a private school would be the better choice for me. My twin decided to continue to Public High School. I soon found out private school was even worse because the classes were designed for college prep. I obviously could not keep up and as a result I failed a lot of my classes. My mom finally got me to a psychologist and he diagnosed me with ADHD. I was immediately put on Focalin. That drug made me too focused. I could block out any teacher, and focus on anything I wanted to instead of the material. Needless to say, my freshman year was a waste and I went back to public high school with my twin. I stopped taking the Focalin because it would take all the brain power out of me that about 2 o’clock in the afternoon I would pass out and couldn’t function the rest of the day. I went through the rest of high school barely passing classes and almost didn’t graduate. I hated every moment of high school. People and teachers made me feel worthless; and I started to believe them.
To make another long story short, I was in an abusive relationship with a man for two years. I was so focused on trying to fix this relationship that I was not on speaking terms with my twin sister and my relationship with my parents was very strained to say the least. It was a rough and emotional time for me and for my family. The following summer, I started a community college and I told myself that I was done with people’s rude comments and I was going to do this and bust my butt trying to pass these classes. I also began a part-time job as a front desk agent with my twin sister at a local hotel in town. I also helped with housekeeping and breakfast on occasions.
I finally had it one day, I broke up with my boyfriend of 2 years and called my parents. I apologized and told them everything. I wanted to just come home. Without any questions, my parents came and helped pack my bags and put my things in boxes and I left and never looked back. I continued going to college and working at the hotel. I didn’t like living at home with my parents again; it felt like a repeat of high school.
I was really lonely during this time. While I was dating him, I really hurt my twin a lot and she didn’t want to be around me anymore. That broke my heart. I went in and out of a depressive state. I finally had had enough and told myself that I deserved more. So something inside of me told me to get on an online dating site and make a profile. Within the next week, I had met my future husband, Jimmy I was happy again. A man in the Army with his life together, with no criminal background, no smoking, no drugs – nothing! Hooray! I kept a secret for a while from my parents. Most sane people would need time to get over a two year relationship, but with an abusive relationship; it’s just different. Jimmy was this beacon of light in my life and I was never going to let that go. Jimmy was stationed at an Army base 4 hours away. He drove up to my hometown to meet me the next weekend. We had a blast and he made me happy. So he eventually met my parents and Jimmy and I a drove back a forth every other weekend to be with other; along with Skype during the weekdays.
Jimmy asked me to be his girlfriend in September! I was tickled pink! Going to college full time, having a part-time job, and driving back and forth to jimmy was becoming exhausting. I felt extra tired – like I had run a marathon the day before. I felt like things were becoming easier emotionally, I was happy, and of all thing – I was losing weight! What girl doesn’t want to lose weight!? I weighed 178 in August. I now weighed 161 without doing any exercise.
October – November 2012
This is when my body began to change. I was taking some sick days because I was throwing up some, but I just assumed I had the flu or ate something bad. Towards the end of November, I had my wisdom teeth removed. My face was really swollen. And it took me over a week to go back to work and school. My twin got her wisdom teeth removed a week or so later, and it only took her three days to recover. Once again, I was the freak who took too long to do everything. The puking increased after my surgery. I never really threw up food, it was more foamy white clear junk. I really just thought I kept getting the flu. I weighed 152 now. I remember visiting Jimmy on base one weekend. He lived on the third floor in the barracks. I remember getting extremely winded trying to keep up with Jimmy, walking to his room. When we got to the stairwell, I passed out on the 2nd floor set of stairs. My vision went completely black. I woke up in Jimmy’s arms. Jimmy had to carried me up the 3rd floor set of stairs and to his room. I remember not doing much the rest of the weekend – I think we just watched movie after movie.
In December, I began working a lot less and calling in a lot. I almost stopped going to class completely. I usually was only going to my night classes (Which I was failing too.) I had bought a plane ticket to fly across the country to meet Jimmy’s parents for Christmas. That trip just about killed me. I had never had so much anxiety or fearfulness about being in a airplane. I think it was because I was trying not to throw up on the gentleman next to me in the worlds dinkiest plane. I remember getting there; I threw up in the airport bathroom. I felt so bad, like I was hiding something from Jimmy. I felt so dizzy that I had to lay down in the back of Jimmy’s car on the way to his parent’s house. That entire trip I slept a lot. I couldn’t keep up with Jimmy and his family while walking through the mall. I asked to sit down a lot. I was extremely dizzy, my vision would go in and out. I drove back with Jimmy home, I slept even more in the car. Now my hair started to fall out – in golf ball sizes.
In January, Jimmy asked me to marry him. I was more than happy. I slowly became worse, throwing up 4-10 times a day. My twin lived up north about 2 hours away with my Aunt. I went up one weekend to hang out. I slept almost of the whole time. I felt so sick and dizzy, that I couldn’t drive my car back home. My parents had to come get me. My aunt told my mom that something else was going on with me. My aunt mentioned how dark my knuckles were and that my skin was yellow. I weighed 138 now and I had absolutely no appetite and had bald spots in my hair. I remember staring off into space a lot and having the occasional feeling of being in a earthquake – even though I wasn’t moving at all. When my parents picked me up, we made the 21/2 hour trip back to our home and my mom took me directly to the emergency room. I was diagnosed with hypothyroidism. I was given a prescription and was told to see my primary doctor. I went to the doctor the next day and they looked at the emergency room report and agreed it was hypothyroidism. I left with the medication with the understanding that sometimes it takes awhile to get the dosage correct. I felt good for about 3-4 days and then it all started again. I went back to the doctor and they changed the dosage of the medicine and said it could take up to 30 days for the medicine to have the results they wanted. Again, in about 3-4 days I was sick again. this time the doctor could not get my blood pressure to regulate and noticed that my muscle mass was quickly deteriorating. the doctor suggested I get some Ensure to add calories and nutrients to my diet. Things continued to get worse. The medication wasn’t helping. My Mom wanted me to go back to the doctor, but I was sick of the doctor and wanted to give it the 30 days they doctor had indicated.
By now, I no longer could travel to go see Jimmy; so he came to me. My boss at work took me off the schedule until “I felt better” and I completely stopped to going to college. My mom could not understand how I could be so distant from planning my own wedding and questioned me as to if I was sure if I wanted to get married. She didn’t know what was going on with me. I stayed in my room and slept all day. I just got engaged – shouldn’t I be excited? I was emotionless and I just wanted to sleep. I was still getting worse. My mom took my to the ER this time. I was rehydrated and told to see my primary doctor again. After that, I went straight back to throwing up and no appetite. It now was the norm for me to be in bed for 10-15 hours a day with a towel and a puke bucket next to my bed. I started to lose my muscles in my legs and arms. I had to use my sheets to pull myself up out of bed and I would crawl on my hands and knees to get to the bathroom. I lived on the second story of my parents house. I never went downstairs. I had a box of saltine crackers and a water bottle I would fill up in the morning. I was literally dying and had no idea.
Jimmy and I were to be married in March. We were going to have a private wedding since I didn’t feel well. A week before our wedding, I called our Pastor and told him we will have to postpone because I couldn’t even walk down the aisle. On March 24th, 2013, my mom wanted me to return to the emergency room because I was obviously not well and deteriorating. the morning of March 25, 2013, my mom came to check on me upstairs before she left for work and found me covered in puke and not able to get up. Mom contacted my older sister, who was in nursing school and told her we were going to the ER again. My older sister explained she had finally found the disease that caused the skin to darken and discolor and told my mom to print off the information and take it with her because it is a rare disease that is not well known. I collapsed and passed out. Mom called my Aunt who lives near by and they both got me downstairs and rushed me to the hospital. I remember sitting in the ER waiting room in a wheelchair. I couldn’t hold up my head. I was a limp rag doll. No thought in my head – nothing. Just sitting in the wheelchair with my head fallen forward. No muscles to hold anything up. Worse part was Jimmy was on his way to our house to come visit. He had no idea what was going on. I weighed 119 pounds. Last time I was that small, I was ten years old. They immediately took me back when they took my blood pressure. I was two points away from being in a coma. The emergency team could not understand why my blood pressure would not stabilize like it should. They asked my mom was there something they needed to know. Mom pulled out the information she had printed off about Addison’s Disease and gave it to the doctor. The doctor immediately took the information and contacted someone, we don’t know who, but he came back with two vials of life giving medication – Prednisone. I was admitted to ICU and the blood work began. I was on bag after bag after bag of saline to keep me hydrated. The doctors came back and told me that along with my deathly low blood pressure, my potassium was incredibly off the charts low as well as my sodium levels. After doing a cortisol and ATCH blood test, my blood work was ordered and shipped to Mayo clinic. (My twin sister was also tested and blood work shipped to Mayo clinic. Since we are twins, she has a 70% chance of getting Addison’s as well. So, she will be monitored for any signs of Addison’s for the rest of her life.) Jimmy arrived at our house and called my cell phone to ask where everyone was. I told him I was in ICU. He drove over and stayed by my side until the nurses told him visiting hours were over. I spent the night listening to my my machines beeping and leg boots compress my legs over and over. I didn’t sleep. I couldn’t wrap around my head what had just happened; That months had just flown by and they my doctor said I would’ve have died. The next morning, Jimmy, my mom, my dad, and my older sister were in my room when my ICU doctor came in and asked to shake my older sister’s hand. We asked why? He said, “ She saved your life, Julia. Addison’s Disease wasn’t on my radar.” He continued to explain what Addison’s Disease is and that I will have to take steroids the rest of my life. I remember not even knowing my jaw had dropped to the floor. I didn’t understand. What the heck is an adrenal gland? I’m chronically sick? What!? He left and told me that he’ll get my meds going and I should be able to leave later that day. They injected my steroids into my IV and I felt better within the hour. I had energy again and I had lots to say. Everyone left and it was just Jimmy and I. I remember crying my heart out and asking Jimmy if he still wanted to marry me now that I have a lifelong chronic illness. He giggled and said we hadn’t said our vows yet, but “for better or for worse” applies here. I truly love him with all my heart. I had to walk with a cane for the next week or so while I regained my muscles. My knees were like jelly, literally, they bent backwards.
April 2013 – January 2014
Losing 60 pounds in under 6 months was scary. I was a size 12 and was a size 2 when I left the hospital. Everyday I gradually got better. I ate more and saw my endocrinologist monthly. He had me on Prednisone and Fludrocortisone. Jimmy and I got married on April 13th, 2013. It was a beautiful day. (Even though my dress didn’t fit me) I took the rest of April to regain my strength and pack up my things to move to base to live with Jimmy. In May, I decided to cut all my hair off. It was still falling out and I got sick of dealing with it. Since then, Jimmy and I continued enjoying life as newlyweds and I saw my Endocrinologist every 3 months and got blood work done; adjusting my medication as needed. We got orders to a new duty station and the Army sent us on our way. It was very emotional saying goodbye to my family. They saved my life. We got two cats and I got my first full-time job. I gave up on college. One of the side effects of prednisone is unexplained anxiety. Doctors tried putting me on more meds to help. They made me insane and I didn’t get know who my husband was. Needless to say, I went looking for alternative way to help with my anxiety. After researching online, I found a Service Dog Company that helps with psychological and physical disabilities. It turns out that they have dogs that they train to detect when cortisol is low and dogs that help with anxiety. In January 2013, I was given Misty, a five year old black lab! She has saved my life multiple times. She also knows how to help me with mobility when I’m having a Addison’s Crisis. She comforts me with my anxiety cause by the side effects of the steroids.
Febuary2014 – October 2014
In February, I began get sick again like I did before. I was throwing up, the bucket next to my bed, and I was missing work again. I was losing weight quicker this time. I couldn’t keep my meds down. I tried saltine crackers, I tried crushing my meds up and trying to drink them. I threw up everything. I went back to the doctor – turns out I was pregnant! I was admitted into the Army hospital for dehydration 8 times during my first trimester. Nothing like spending a month in the hospital, right? In April, we found out that my husband was going to be deployed to Afghanistan. I was not getting any better and now he was going to leave. We decided that it would be best if I were to move back home to be with my parents while he was away. So in May, my parents flew down to come get me. It was nice to be back home with my doctors that already knew my story. But now we had a problem – They had never had a addison’s patient that was this young and now pregnant! I had lots of extra ultrasounds and my doctor decided to switch me from prednisone to hydrocortisone. I had lots of heartburn and heart palpitations while i was pregnant. from my knees down i was very swollen and had to wear compression hoses often and couldn’t stand for more than an hour. It was literally a waiting game until November. Jimmy’s Sargent let him come home early to see our baby born.
November 2014 – Present Day
I got my old endocrinologist back and decided to get the same doctor that delivered my older sister’s baby. Well, I learned something. When you have a rare disease – you get all the doctors in the office on your chart! Because my doctors had never had a patient with Addison’s, i got Cushings Syndrome really bad, because my steroid dose was way too high. I got purple striae (purple stretch marks) on my under arms, thighs, butt, stomach, back and some of my calves. I also had a “buffalo hump” on the back of my neck and had a extremely round face. On Nov 3rd, I sat down on my mother’s couch to watch the football game and my water broke. We rushed to the hospital where I went into labor. I was only 4 cm dilated when my baby wasn’t taking the contractions well. Her heart rate kept falling. Once the contractions starting getting stronger, my body started to fail. My blood pressure wouldn’t stay stable. So my doctors decided on a Emergency C-section. My baby girl was born the following morning with her daddy getting to be the first one to hold her! Recovering was the absolute worse thing I have ever gone through. I gained 70 pounds during my pregnancy.I felt like a overweight jelly blob with no strength to even sleep. The stress of the c-section put all of pressure on my legs – which were weak to begin with. I got to go home two days later. I had a lot help from my twin and my mom. I had to walk with a cane and lean against walls for the first few days. I literally cried every time I knew I had to take a shower. I still get nausea thinking about my incision on my bikini line. My husband did most of the work at night – changing her diaper and such. I was just trying to recover. My husband had to help my put on my pants for the first two weeks after giving birth. My daughter is worth all the pain I went through. I love her. Currently, I’m now a stay-at-home-mom. I truly can’t work anymore. It’s not worth get hospitalized over and over and stressing myself out into a crisis. So I hang out with my service dog, Misty and my daughter and two cats. I focus on the little things in life and do big things when I can. I enjoy my crafting and music. I sometime have to be selfish and think about myself first. I have to ask myself often: “Can I physically do this or will I regret it later?” Taking a shower, doing a load of laundry and taking care of my daughter is enough for one day. But everyday is a blessing from God.”