After I got home and had a chance to rest, things went pretty smoothly. I moved out of my parents house for the third time about 2 weeks after I got home from the hospital. My parents didn't want me to move out so soon after my surgery. They were worried that I would have another adrenal attack and no one would be there to help me. I just felt that it was something I had to do. I wanted to get back some of the independance that I have lost back. I assured them that I told my roommate all about my disease and that if something wasn't right to call an ambulance. My mom relented and got a bunch of people to move my things because I couldn't pack any of the boxes. I was excited and nervous... deep down I was scared... What if I had another attack and I could get help? But I WANTED to feel like an adult, not akid who lives at their parents. I still seen my mom everyday, she checked on me ALOT, which I loved. It was nice to know that I didn't have to be scared.
I started feeling better and about a month after my surgery I started getting back to normal. My incisions still were sore but I was careful and started doing more "normal" things such as brushing my horse, cleaning stalls, ect. I still couldn't pack water pails and it took me almost half an hour to clean my stall (normally takes 10-15 minutes) but I was determined to do it. My mom was always giving me crap because she said I needed to rest and heal properly.
There were times I wish I had of listened! For example I got it in my head one day while I was brushing Luci in the arena and walking her around that I could get on her... so I had my mom to help me up on her.... after a bit of begging and alot of convincing.....well I didn't quite make it up nefore I got a BRUTAL pain in my stomach... my mom let me down and I was sore for DAYS.... to the point that I could hardly walk! I decided that I would wait a bit longer before I rode her.... all my mom said was "I told you so!"
I started to realize that I had to be patient. I couldn't do the things I used to, I was tired ALOT. I think that was due to the fact that I no longer have adrenal glands, having my body get use to not having them, and also having my body get used to the new medications that I have to take. I had to learn when to rest... if I didn't feel good or was tired it was a bad idea to just push through it. I had to wait until my body was used to this before I could be the tough guy again.
It took MONTHS for me to start feeling better. I was depressed because I couldn't do anything... I felt like I was 80, I could barely walk up my stairs without taking a break, and this feeling lasted for about 6 months. I also had to be very consistient with taking my pills. If I missed one or was late taking one I felt HORRIBLE for a couple days. It isn't a feeling like having a cold or the flu, it is just complete and udder exhaustion, headaches, and well just not a good feeling.
My life has definately changed even more since my last surgery. I have to be more careful. I keep some pills at my house, in my car and a few at work so if I forget to take them I have extras. I can't be as careless as I once was, if I get hurt my body can't make cortisol to deal with the pain and if I don't compensate with pills my body will go into adrenal shock. I also have to carry a needle in my car, just in case I get in an accident or get hurt. Luckily I haven't had to use it yet, but I have to tak it everywhere.... although I must admit that I forget sometimes. My close friends and family have to know when/how to use the needle. It is comforting knowing that my family and friends know what to do in an emergency situation.
My life has changed alot since I had my adrenalectomy both for the good and the bad. The bad changes include haveing to take medications 3 times a day everyday, not feeling good when I am late taking my pills, I have to be super cautious when playing sports, driving, camping etc. so that I don't get hurt. I still get tired alot, and there are days I have absolutely NO energy, but there are days that I feel GREAT, I have lost 20 pounds (which is the most weight that I have lost since I got diagnosed), and I have learned not to take like for granted. I am starting to learn how to embrace life, and live it to the fullest. I am starting to feel healthy again. I decided to start playing baseball again, I have started going to the gym, and I have started to feel comfortable with the way I look. I started going out with friends, and I am starting to realize what I want to do with the rest of my life.
So far things are going great.
Hello,
ReplyDeleteI live in Budapest, Hungary. I'm 29 years old. I have Cushing-syndrome.
Sorry, I can speak english, little bit.
My blog: www.mycushing.blogspot.com (Hungary language.)
My symptoms: moon face, buffalohump, dead-beatness, muscle ache, zero libido, 24 kg fattening, depression, skin trauma...
My adenoma in my left adrenal gland.
Marc.2010. it's my surgery.
And my other disease, hypothyreoditis and parotis cancer (2004)..parotidectomia.
I shrinkageing (?) 6 kg.
I feel good! My life to go right!:-)
And you? Are you oke?
Bye-bye
Nikol
Hi my name is pamela and i have been extreamly touched by your blogs (that i have only found today) It has brought me to tears just thinking about everything you have been through. This might sound strange but i will explain why.
ReplyDeleteMy daughter was diagnosed with cushings at 23months old in august , i had never heard of cushing before this so everything that has happened in the past 3 motnhs has been a shock to us all. We noticed sophie gaining weight around may , also she had some hair growth allover her body , she became aggresive and very drained throughout the day. As first time parents we werent sure what was happening . I became very worried at the end of july when people started commenting in how big she had got and how quickly ( in a perents eye your child is perfect , sometimes it takes someone else to pick up on things) . So i got a peditrition appointment the middle of august thursday 19th . He diagnosed her within 10 seconds of her being in the room, but explained it was so so rare he couldnt be sure. That night sophie admitted to hospital having her bloods taken every hour for 24 hours, on the friday MRI + CT scans where all booked that day for her. All this time myself and my husband really had no idea about cushings and had no chance to really look it up on the internet ( we truelly expected her to have some medication to take home and that would balance what we thought was a simple hormonel imbalance). Little did we know that the doctor would be sitting us down telling us that sophie had a tumour the size of a large orange above her right adrenal gland. The next 3 weeks where a complete blank and haze of cloud ( thank god for my husband , grandparents and friends who always sat with me in all the meetings as i just couldnt take any of it in). This is my little girl who isnt even 2 yet , and might not see the age of 2. To cut a long story short , sophies surgery was sucessful , and she is doing very well. We have goo day and bad days and i get very worried about her getting a cold . She will be om medication 3 times a day until the other gland kicks back in ( HOPEFULLY) fingers crossed.
Anyway i wouldlike to thank you for writting these blogs ,i know have a very good understanding of what my daughter is going through as she cant tell me . Pamela Craig ( A very grateful mum for this blog) xx