Challenges & Victories

5 Challenges & 5 Small Victories.

What would life be without challenges and victories along the way? It would be dull and we never would learn anything, never grow as a person. So, even though the challenges and victories are sometimes hard fought and hard won or not they all make life worth living. So over the course of time, while I have been dealing with my journey that has become bigger than I ever imagined. Here are the top 5 challenges and small victories I have encountered.

My Challenges:

#5  Family turning on me   I have been sick for four years now. Before this I was perfectly healthy and happy. Living life and learning a new normal. Things were falling into places and things were looking up. Then I got sick and I had a lot of family that supported me. They were all there for me through the tests, surgeries, comas, hospitalizations, sicknesses, etc... But now it's been four years and I've had my surgery so it's time I get over myself and get on with my life. I was told that all I ever talk about is being sick and my illnesses. It's really not that big a deal, but I am making it more of an issue than it needs to be. I was even told by a very special person that I was a waste of their time and breath. Wow, I'm not even worth the breath she wastes talking to me. That's sweet. So, people have pushed me out of their lives because I still have a lot of medical issues. Some are Cushing's related and some are the result of many other illnesses I have now. Oh well, time marches on and so do I.

#4  Being Sick and Hospitalized : After my successful surgery on October 31, 2012 it seemed like everything started to really fall apart. I started ending up in the ER and hospital more than ever in my life.  I knew it would be a challenge getting better from my surgery, but I had no idea that everything started falling apart in my body. I spent more time in the hospital than at home. This was very tough for me and my kids. I didn't see my children very much. They had school and other activities. I was an extra trip to go visit with, so they were not allowed to visit me much. They wanted to, but it was just not allowed.

#3  Getting Diagnosed: Once I found a doctor who would actually listen to me I started working on building my personal medical team. Doctors who cared and would listen to me. But also doctors who knew what they were doing, so they knew the hoops I needed to jump through in order to be diagnosed.  So many tests, labs, 24 hour urines, blood work, MRIs, CTs, Ultrasounds, you name it and there is a good likelihood that I have been through it.  My endocrinologist kept telling me that it would all be worth it in the end. And it was. After all the tests were finally done I was diagnosed with diabetes, high blood pressure, and Cushing's Syndrome. They had found an egg size tumor on my right adrenal gland.

#2  Finding a doctor who would listen to me:  I had been going to a group of doctors for years when I first started having symptoms. They were not interested in doing anything about my new symptoms. Just kept telling me it could be because I was so stressed out having lost my dad and my husband within the two years previous.  Since they wouldn't help me I searched for a new doctor who would listen and figure out what was wrong with me. I found a couple of doctors who would act like they were going to help me at first and then it turned out they were just in it to get as much money as they could out of me. I went through four or five doctors before I finally found the one who would listen to me. He ran the blood test and referred me to an endocrinologist. After that, my medical team was on the way to being built and it had the right doctors finally. Some that cared and got results.  I know if I had listened to the first few doctors I saw I would have never pursued actually getting diagnosed. So many doctors would tell me that my tests came back normal so there was nothing wrong with me. I refused to accept that because I knew something was wrong.

#1  My first attempted surgery and me flatlining after:  July 2, 2012 is a day that will forever live in my mind and memories. That is the day I went in for my first attempt at removing my right adrenal gland and tumor. This was supposed to be an easy surgery. "No big deal." "We'll be in and out in no time." these are the things I doctor said to me. Then I was wheeled off to surgery. I remember making it to the operating room and moving over to the surgical table. Then I started counting backwards and it was lights out. I woke up several hours later with something down my throat that was breathing for me. Turns out that my liver was five times the size it's supposed to be because of my Cushing's. The surgeon couldn't find my adrenal gland. They woke me up in the operating room and told me what the new plan was and why I couldn't have my surgery that day. I was supposed to have said I understood and then I fell back on the table and flatlined on them. They had to revive me, put me on a ventilator, and wheeled me to ICU. Which is where I was, waking up on a ventilator. That was a very scary moment for me. I had four other times over the next two years that I almost died and ended up on a ventilator in ICU, clinging to life.


My Victories:

#5   Being able to go places:  I know this may sound strange to some, but just being able to go places and go in. Like going shopping at the grocery store or Wal-Mart, etc... that is something I had missed so much. I went for around a year and a half without going shopping or hardly getting out of the house at all.  I didn't even go out to check the mail. I stayed in my house and slept, a lot. And when I wasn't sleeping I was going to the bathroom or eating. I was hardly awake long enough to visit with my kids and see how they were doing.



  
#4  Losing Weight:   During the prediagnosis time for Cushing's I was putting on a lot of weight very quickly. I gained approximately 151 lbs. in about a eight months time. It was terrifying to me that I was gaining this weight while eating healthy and walking daily.  I was eating tons of salads and whole grains. I had cut out soda and sugary drinks from my diet and was drinking a lot more water and occasional juice. But the weight kept coming on. After my successful surgery in October 2012, I started losing weight immediately.  I lost 30 lbs the first month. It was coming off quickly. It was aided in coming off by my bouts of gastroparesis and pancreatitis. Because when those flaired up I would end up on a "Nothing by mouth" diet for days and then it would be "Ice Chips Only" and after that I would finally graduate to "Clear liquids."  This is not a diet that will put any weight on. It takes the weight off like crazy and I was enjoying it immensely. The first six months after surgery and I had lost around 80 lbs. I finally got 100 lbs off and I felt great.

#3 Walking to the Park with my kids:   About three weeks ago I had a very exciting Saturday. My kids had been begging me for years to walk them to the park. We live about two blocks from the park, so it didn't seem like a big deal to them to walk over there. It was a beautiful, sunny day.  I told the kids to pack a lunch in our backpack and we would go to the park.  We  set out on our journey and I actually made it to the park.  We sat and ate our food and then the kids played for three hours. It was so wonderful to be able to sit there and watch them play. They were so excited and full of life. We finally packed up and went home. It was harder on my journey home because I was tired from being out for so long, but I made it home. It was a major victory for me. It had been over three years since I had been able to do something like that. It felt fabulous.

#2 Successful Surgery:   October 31, 2012 finally arrived and I was in St. Louis, Missouri waiting on the only surgeon in the whole state who could perform my surgery without killing me. He is a wonderful doctor and surgeon. He knows about Cushing's because he has several Cushing's patients. I was feeling scared and goofy that day. Fear had taken over and I was very happy to see I had a purple outfit to put on with a bear on the top and purple socks that looked like bear claws. So, I was able to kinda dress up like a bear for Halloween. That made me laugh. It's a blurr what all happened before my surgery. I just remember being there at the hospital and then I woke up and my surgery was over. It was a success and they were able to remove the adrenal gland and egg size tumor. I was in pain, but the nurses took wonderful care of me. It was two days of recovery and then I was on my way home. It felt like a victory.

#1  I'm Alive!!!!   As I mentioned previously, I have had several times when my health has majorly failed me and I have been barely hanging on to being alive. I have spent five times in the ICU on a ventilator and in a coma. Some were short stays of just a day or two. Some were longer stays with me being in a coma for three days before I started coming back around. Spent several days in the hospital after that and then I was released. But, even through all of the challenges that have come my way, I have faced them all and I'm ALIVE!!! I know that I have a greater  purpose in my life or else I wouldn't have made it through all the times that I was so very sick. I am thankful every day that I am still here. I have had a successful surgery and I am proof that things can work out. I know that I will still face challenges and setbacks in my journey. But the one thing that I will always celebrate as a victory is the simple fact that I'M ALIVE!!!!!!