I will be looking forward to April 1st!! :)
Thursday, 28 March 2013
Cushing's Awareness Blog Challenge 2013!
With recently being diagnosed with Cushing's Disease, this year I decided to participate in the Annual Cushing's Awareness Blog Challenge. Cushing's Awareness Day is on April 8th, so that is why the blog challenge is done in April. Each day in April I will blog about something different related to Cushing's Disease and hopefully you all come back each day as I post something new so we can all learn and become aware about this rare disease.
Recovery!
Finally, I arrived home Monday afternoon and I don't think there any words to describe how happy I was. Like I said before, surgery was finally over and I could finally get myself back on the road to health, a new me, a new start!!
As we drove up to the house I was getting so excited because I knew the second Scout saw me he would be so happy. I missed him so so much!! I walked into the house and there he was jumping around, I couldn't have been happier. I was finally home, finally got to be with my little man and I had a whole house FULL of flowers. Thank you so much to everyone who came with flowers and gifts, I couldn't appreciate it more. :)
I had so much support at this point it was a little over-whelming. One of my close friends had even organized my suppers to be delivered for the next two weeks so I could get some much needed rest. This was just amazing. Thank You Julie so much for putting this together and also Thank You everyone who was involved in the dinner making, Bradey and I appreciate this so much and it was all delish!
The following Monday I had a follow-up appointment with my Endocrinologist, she was very please with how everything was looking. Basically most important was getting my cortisol levels back on track. This is going to take some time but that's understandable with how much they had dropped and how much my body was used to. I was told to slowly wein myself off them so then hopefully my pituitary would start functioning on its own again.
I also had an eye appointment with an eye specialist to make sure there was no damage done to my optic nerves during surgery. Everything looks great!! :)
That Friday I had a follow-up appointment with my ENT surgeon. I was actually pretty excited for this considering I could not blow my nose since surgery and I couldn't even sneeze. This was terrible, (haha) so I could not wait to see him because he was going to be cleaning me out. When we arrived at the appointment he did a lot of cleaning which did not feel the greatest, and he looked at my scar which he said was coming along fine. I felt much better after this appointment because I could breathe through my nose again.
I did return to work the Monday after (I believe this would be March 11th), however I was trying to wein myself off my steroids so I wasn't feeling the best. Everyday was different, it was a roller coaster of feelings and emotions. I actually even ended up having to go to emergency one night because I just wasn't feeling right. Turns out, I was going through steroid withdrawal. What a terrible feeling! Anyways, all I could basically do at this point was to rest and take care of myself as best I could. I only worked this week part-time because of this, I figured my health was pretty important.
On March 20th I had two more follow-up appointments, one with my Endocrinologist and one with my ENT surgeon. At first I went to meet up with my Endocrinologist and she said the results from my blood work looked great. Some things were back to normal and other things were getting back on track to being normal. This was awesome!! She also told me they did a biopsy on the tumor and I now am 100% diagnosed with Cushing's Disease. (Well hopefully now the little bugger never decides to grow back so I don't have to deal with it again.)
After my appointment with the Endocrinologist I went to the ENT office. I wasn't looking forward to the visit this time because I knew what to expect and it wasn't the best feeling. It was nice to get my nose cleaned out again tho because I still wasn't aloud to blow my nose or sneeze. He said my visit this time was almost like day and night compared to last time. I was healing up just the way he wanted me to. He also told me that I could start doing very light activity which was nice because I wanted to start swimming or doing something to get moving again.
There were still some funky things happening with my smell and the way I was feeling so I thought maybe it was a good idea to get in contact with my Neurosurgeon just in case since I didn't see him for another two weeks. There are no words to explain how Thankful I am to have such an amazing person as my Neurosurgeon. Him and his staff are so helpful and I am in contact via e-mail with him so if I have any concerns I can deal with him directly. He actually sent me for an emergency EEG, but he reassured me not to worry as he thinks it will turn out to be nothing serious.
The days are still a roller coaster, but I am starting to feel much better. I am back at work and now just to slowly get back into things, I started swimming and already I think its making me feel a bit better. I also started to wein myself off my steroids again in hopes this time I don't feel as terrible doing it.
I have two more follow-up appointments next week, which one is my Neurosurgeon. It will be my first follow-up appointment with him and I'm just so excited to see him so I can Thank him for everything he has done for me. Really he has given me a second chance at life and I don't think there are any words that can describe how Thankful I am.
It's going to be a long road but I think now I am ready, ready for a new adventure and a new ME!! With that being said I believe I was given this for a reason. I CAN handle it and I WILL!!! It's amazing what a little faith and positive thinking can do. Sometimes I consider myself lucky, things could have been much worse and also now I have something to look back on and I hope someday I can teach others about Cushing's Disease and everything I had learned on my adventure. There is more adventure ahead of me as well as I am still learning myself.
Here's to the road of recovery...
As we drove up to the house I was getting so excited because I knew the second Scout saw me he would be so happy. I missed him so so much!! I walked into the house and there he was jumping around, I couldn't have been happier. I was finally home, finally got to be with my little man and I had a whole house FULL of flowers. Thank you so much to everyone who came with flowers and gifts, I couldn't appreciate it more. :)
I had so much support at this point it was a little over-whelming. One of my close friends had even organized my suppers to be delivered for the next two weeks so I could get some much needed rest. This was just amazing. Thank You Julie so much for putting this together and also Thank You everyone who was involved in the dinner making, Bradey and I appreciate this so much and it was all delish!
The following Monday I had a follow-up appointment with my Endocrinologist, she was very please with how everything was looking. Basically most important was getting my cortisol levels back on track. This is going to take some time but that's understandable with how much they had dropped and how much my body was used to. I was told to slowly wein myself off them so then hopefully my pituitary would start functioning on its own again.
I also had an eye appointment with an eye specialist to make sure there was no damage done to my optic nerves during surgery. Everything looks great!! :)
That Friday I had a follow-up appointment with my ENT surgeon. I was actually pretty excited for this considering I could not blow my nose since surgery and I couldn't even sneeze. This was terrible, (haha) so I could not wait to see him because he was going to be cleaning me out. When we arrived at the appointment he did a lot of cleaning which did not feel the greatest, and he looked at my scar which he said was coming along fine. I felt much better after this appointment because I could breathe through my nose again.
I did return to work the Monday after (I believe this would be March 11th), however I was trying to wein myself off my steroids so I wasn't feeling the best. Everyday was different, it was a roller coaster of feelings and emotions. I actually even ended up having to go to emergency one night because I just wasn't feeling right. Turns out, I was going through steroid withdrawal. What a terrible feeling! Anyways, all I could basically do at this point was to rest and take care of myself as best I could. I only worked this week part-time because of this, I figured my health was pretty important.
On March 20th I had two more follow-up appointments, one with my Endocrinologist and one with my ENT surgeon. At first I went to meet up with my Endocrinologist and she said the results from my blood work looked great. Some things were back to normal and other things were getting back on track to being normal. This was awesome!! She also told me they did a biopsy on the tumor and I now am 100% diagnosed with Cushing's Disease. (Well hopefully now the little bugger never decides to grow back so I don't have to deal with it again.)
After my appointment with the Endocrinologist I went to the ENT office. I wasn't looking forward to the visit this time because I knew what to expect and it wasn't the best feeling. It was nice to get my nose cleaned out again tho because I still wasn't aloud to blow my nose or sneeze. He said my visit this time was almost like day and night compared to last time. I was healing up just the way he wanted me to. He also told me that I could start doing very light activity which was nice because I wanted to start swimming or doing something to get moving again.
There were still some funky things happening with my smell and the way I was feeling so I thought maybe it was a good idea to get in contact with my Neurosurgeon just in case since I didn't see him for another two weeks. There are no words to explain how Thankful I am to have such an amazing person as my Neurosurgeon. Him and his staff are so helpful and I am in contact via e-mail with him so if I have any concerns I can deal with him directly. He actually sent me for an emergency EEG, but he reassured me not to worry as he thinks it will turn out to be nothing serious.
The days are still a roller coaster, but I am starting to feel much better. I am back at work and now just to slowly get back into things, I started swimming and already I think its making me feel a bit better. I also started to wein myself off my steroids again in hopes this time I don't feel as terrible doing it.
I have two more follow-up appointments next week, which one is my Neurosurgeon. It will be my first follow-up appointment with him and I'm just so excited to see him so I can Thank him for everything he has done for me. Really he has given me a second chance at life and I don't think there are any words that can describe how Thankful I am.
It's going to be a long road but I think now I am ready, ready for a new adventure and a new ME!! With that being said I believe I was given this for a reason. I CAN handle it and I WILL!!! It's amazing what a little faith and positive thinking can do. Sometimes I consider myself lucky, things could have been much worse and also now I have something to look back on and I hope someday I can teach others about Cushing's Disease and everything I had learned on my adventure. There is more adventure ahead of me as well as I am still learning myself.
Here's to the road of recovery...
Wednesday, 27 March 2013
Surgery...
Well its been a little over a month now since I had my surgery, I have been trying to rest so I do apologize for the delay in blog!!
Heres my story...
Thursday February 21st was the day of my procedure, I was to be at Foothills hospital at 5:30am to check-in. Bradey, mom and myself left town around 4:45am with barely any sleep. I was way to excited, scared, nervous, I cant even explain the feeling I had that morning as we were on the way to the hospital. When we arrived I checked in and headed up to the third floor where I had to change into my hospital clothes. Everything happened so fast.. I was changing and the next thing I knew the porter was there to take me to the main building where I was to get my operation. YIKES!!!
They wheeled me through some big doors, mom and Bradey at my side, and there it was just on my right hand side the room that everything was going to take place. At this point I was pretty nervous (who wouldn't be!!!) and the MRI technician came up to me and started to explain how I would have to go for an MRI before hand just so they could see everything in a clear picture before they started. While she was explaining everything we were awaiting the arrival of the surgery team. The ENT surgeon, my Neurosurgeon, Anesthesiologist and the rest of the team which I am unsure how many there were. I believe the first person to arrive was my ENT surgeon, he was incredible, introduced himself and asked if I had any questions. He also informed me that I would not have any packing in my nose after the surgery, this made me so happy! The next person to come introduce himself was my anesthesiologist which whom I was so nervous to meet because being put to sleep was one of my biggest worries. He talked to me about my fears and definitely made me feel more comfortable.
Then, my neurosurgeon, I knew the moment I saw him walk through the doors that I would become very emotional and everything would turn into a reality. Then it happened... there he was standing over my bed. So many emotions were going through my head, everything was now so real and at any time I would be wheeled into the room to start the procedure that would essentially change my life. It was so amazing to know how calm he was and how amazing everyone there was. I couldn't be more thankful. My neurosurgeon asked me if I had any questions and also informed that he didn't think I needed an MRI, he just wanted to get started and he felt confident that nothing had changed since my last one.
I was still pretty anxious so my anesthesiologist offered to give me something to calm me down, I accepted at this point. With my mom and Bradey by my side, the anestegolost inserted my main IV in my hand. I don't know what he put in that IV but I was instantly relaxed. What felt like only seconds later I was saying Goodbye to both my mom and Bradey as they began to wheel me through the big operating doors. Again I can not express how amazing this whole team was, the nurse offered to hold my hand until I was asleep, they passed me the oxygen mask to hold onto my face and the very last thing I remember is my anesthesiologist telling me how amazing I was doing. OUT!! OPERATION TIME!
The very next thing I remember was in the recovery room and it took me awhile to wake up completely. I would come in and out of it, the nurse was asking me the same questions over and over again making sure I was functioning properly and there were no injuries to my brain. After being closely monitored they then transferred me to the 11th floor where I would then spend the next 4 days. When I arrived on the 11th floor, I was greeted by my mom and Bradey. As soon as I saw them I was so happy, everything finally over. I just had to face recovery and then get on the road to my new life.. I could finally start living again and hopefully start to feel like myself sooner then later.
I don't think I was in to much pain but I think that's because they were giving me doses of morphine and gravol, it was either the morphine or anesthetic that made me very sick. Then a couple hours after just sitting there they called me down to the basement level to do a post-op MRI. My dad and brother arrived just in time to come down with me and my mom and Bradey headed home after a very long 16 hour day.
Friday morning I was waken up by that mornings surgery team for a post-op update. Everything went very well, this was such a relief to hear. The surgeon was very happy with how things went. I also got the results from my post op MRI and everything looks very well. The pituitary gland may have been swollen but that's expected after being operated on. After the surgery team came, a team of Endocrinologist's came in the room and explained to me that my levels dropped drastically and they were very happy with how my blood work looked. My Cortisol levels were at levels of over 2,000 and by Friday morning had dropped to 106, because there was such a huge drop I was extremely nauseous. I knew with such a drastic change that it was going to be a long road of recovery and I would have to take steroid replacements for a long time until my body started to produce cortisol on its own again.
The next couple days were a roller coaster. The headaches would come and go, sickness would come and go, vitals every 4 hours, blood being drawn twice a day or more, having to pee in a hat and have it monitored after they took out my catheter, by the time Sunday came I was so ready to go home.
I had a room full of flowers which was an amazing feeling to know so many people were thinking of me and I was not alone. Not only did I have a hospital room full of flowers but I knew at home I had a house full waiting for me too.
Saturday I finally got out of bed and went for a walk which was really nice. I did start to feel better after I got moving. Saturday and Sunday I would get up and walk the hallway of floor 11. This was my excitement, however Sunday afternoon Bradey took me down to the main floor so I could get some fresh air but I still wasn't aloud to go home.
When Monday morning came around I was hoping the nurse would come in and say I could go home, I had to wait until afternoon to get released but it was so nice when she finally said I was going to be going home and I could finally sleep in my own bed. I mean, things could be much worse and I am thankful to only have had to stay 4 nights there but it was a little longer then I thought and what I was told. I guess its good that I was left in good hands tho. :)
Bradey arrived around 10am that morning all ready to take me home,
Now, the road to recovery...
Heres my story...
Thursday February 21st was the day of my procedure, I was to be at Foothills hospital at 5:30am to check-in. Bradey, mom and myself left town around 4:45am with barely any sleep. I was way to excited, scared, nervous, I cant even explain the feeling I had that morning as we were on the way to the hospital. When we arrived I checked in and headed up to the third floor where I had to change into my hospital clothes. Everything happened so fast.. I was changing and the next thing I knew the porter was there to take me to the main building where I was to get my operation. YIKES!!!
They wheeled me through some big doors, mom and Bradey at my side, and there it was just on my right hand side the room that everything was going to take place. At this point I was pretty nervous (who wouldn't be!!!) and the MRI technician came up to me and started to explain how I would have to go for an MRI before hand just so they could see everything in a clear picture before they started. While she was explaining everything we were awaiting the arrival of the surgery team. The ENT surgeon, my Neurosurgeon, Anesthesiologist and the rest of the team which I am unsure how many there were. I believe the first person to arrive was my ENT surgeon, he was incredible, introduced himself and asked if I had any questions. He also informed me that I would not have any packing in my nose after the surgery, this made me so happy! The next person to come introduce himself was my anesthesiologist which whom I was so nervous to meet because being put to sleep was one of my biggest worries. He talked to me about my fears and definitely made me feel more comfortable.
Then, my neurosurgeon, I knew the moment I saw him walk through the doors that I would become very emotional and everything would turn into a reality. Then it happened... there he was standing over my bed. So many emotions were going through my head, everything was now so real and at any time I would be wheeled into the room to start the procedure that would essentially change my life. It was so amazing to know how calm he was and how amazing everyone there was. I couldn't be more thankful. My neurosurgeon asked me if I had any questions and also informed that he didn't think I needed an MRI, he just wanted to get started and he felt confident that nothing had changed since my last one.
I was still pretty anxious so my anesthesiologist offered to give me something to calm me down, I accepted at this point. With my mom and Bradey by my side, the anestegolost inserted my main IV in my hand. I don't know what he put in that IV but I was instantly relaxed. What felt like only seconds later I was saying Goodbye to both my mom and Bradey as they began to wheel me through the big operating doors. Again I can not express how amazing this whole team was, the nurse offered to hold my hand until I was asleep, they passed me the oxygen mask to hold onto my face and the very last thing I remember is my anesthesiologist telling me how amazing I was doing. OUT!! OPERATION TIME!
The very next thing I remember was in the recovery room and it took me awhile to wake up completely. I would come in and out of it, the nurse was asking me the same questions over and over again making sure I was functioning properly and there were no injuries to my brain. After being closely monitored they then transferred me to the 11th floor where I would then spend the next 4 days. When I arrived on the 11th floor, I was greeted by my mom and Bradey. As soon as I saw them I was so happy, everything finally over. I just had to face recovery and then get on the road to my new life.. I could finally start living again and hopefully start to feel like myself sooner then later.
I don't think I was in to much pain but I think that's because they were giving me doses of morphine and gravol, it was either the morphine or anesthetic that made me very sick. Then a couple hours after just sitting there they called me down to the basement level to do a post-op MRI. My dad and brother arrived just in time to come down with me and my mom and Bradey headed home after a very long 16 hour day.
Friday morning I was waken up by that mornings surgery team for a post-op update. Everything went very well, this was such a relief to hear. The surgeon was very happy with how things went. I also got the results from my post op MRI and everything looks very well. The pituitary gland may have been swollen but that's expected after being operated on. After the surgery team came, a team of Endocrinologist's came in the room and explained to me that my levels dropped drastically and they were very happy with how my blood work looked. My Cortisol levels were at levels of over 2,000 and by Friday morning had dropped to 106, because there was such a huge drop I was extremely nauseous. I knew with such a drastic change that it was going to be a long road of recovery and I would have to take steroid replacements for a long time until my body started to produce cortisol on its own again.
The next couple days were a roller coaster. The headaches would come and go, sickness would come and go, vitals every 4 hours, blood being drawn twice a day or more, having to pee in a hat and have it monitored after they took out my catheter, by the time Sunday came I was so ready to go home.
I had a room full of flowers which was an amazing feeling to know so many people were thinking of me and I was not alone. Not only did I have a hospital room full of flowers but I knew at home I had a house full waiting for me too.
Saturday I finally got out of bed and went for a walk which was really nice. I did start to feel better after I got moving. Saturday and Sunday I would get up and walk the hallway of floor 11. This was my excitement, however Sunday afternoon Bradey took me down to the main floor so I could get some fresh air but I still wasn't aloud to go home.
When Monday morning came around I was hoping the nurse would come in and say I could go home, I had to wait until afternoon to get released but it was so nice when she finally said I was going to be going home and I could finally sleep in my own bed. I mean, things could be much worse and I am thankful to only have had to stay 4 nights there but it was a little longer then I thought and what I was told. I guess its good that I was left in good hands tho. :)
Bradey arrived around 10am that morning all ready to take me home,
Now, the road to recovery...
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