I am really excited to share this article to you all!! It has my good friend, blogger and Co founder of our site Cushingstories.com in it! They feature quotes from the both of us. I am so proud that Novartis is taking the time to really talk about Cushing's and Advocating for it. Rachel and I both have Cushing's and really want ppl to understand it. This is just the beginning! Novartis is making great strides in getting awareness out there for our disease and many other Rare Diseases also. Please check out the article! #RDD2015 #GetLoud #Raredisease #Cushing's
http://www.novartispharmaceuticals.com/en/stories/detail/5-things-every-person-living-with-a-rare-disease-understands
Friday, February 27, 2015
Sunday, February 15, 2015
Everyday Rae Rae: Hospital Valentines...Best one Ever
Everyday Rae Rae: Hospital Valentines...Best one Ever: The love day! Valentines Day. Its that time once a year that is dreaded by many or such an exciting day for others. I happen to love Valenti...
Thursday, February 12, 2015
MIA....in hospital
Ahhhh the glories of a low immune system;) Been in the hospital now for three days going on four. Remember how I said I got sick Super Bowl Sunday? It hasn't gone away. Yeah! Lucky me .....not. :)
By day 9 Ryan took me to ER and they said I had bronchitis and asthma on top of it. Three breathing treatments later and medicines, inhalers etc we were sent home. Next day even though I had been on antibodies for days I felt worse. Being in remission from Cushings Disease I still have low immune system being only 6 months post op from brain surgery. Everything else is a thousand times better though. For that I am so terribly grateful! The sickness part though seems to go on and on for me. End up having to stress dose cortisol (since now it's my friend not my enemy) because sickness eats it up.
I thought I would get better but I just couldn't breathe. Coughing so much and so hard I would vomit. Had to breathe really shallow and talk low to not cough. Felt extremely dizzy and not hungry at all. We ended up going back to the ER mid day since my MD was out of town this week. They admitted me into the hospital within 40 minutes. I have been here since.....laying in my hospital bed under that ugly pink blanket ha!
Good news is I am getting better. I am so pumped full of steroids right now. 160 mg cortisol daily. Breathing treatments every hour on the hour and some even in between, antibodies and fluids. Now on day three here I am feeling better even more so and have breathing treatments every two hours. I look a wreck but the only time I am up is to go to the bathroom or shower or I am short of breathe.
Something I learned is when you have Cushings that cortisol masks some things like auto immune problems or asthma etc bec the cortisol is naturally so high from the tumor that you just don't know it. So in remission I am finding out I have asthma.....maybe always have had it but it was masked. Well guys......bronchitis and asthma don't mix.....at all. Just trust me on this one haha.
We are on day 12 of being sick I really am feeling bad. Not health wise but bad that my family is having to keep on keeping on without me. I am very lucky to have the husband I have. He is so generous and kind in all ways and knows that this of course is out of my control. He always asks me "well if it were me in your place what would you do?". I would do anything I could of course but I definitely think I would be way more cranky than he is ha! We really lucked out too bec the day I got admitted Grandma Sally (Ryan's mom and my awesome MIL) was coming up to stay with us. It never ceases to amaze me how she just jumps right in and helps and doesn't gripe about it. With my mom in heaven it really makes me think that she somehow has a touch in her that helps Sally to be there for us when we really need it.....along with the fact she would just do it anyways. My mom would always come to the rescue like that. Anything for me or her grand kids....she would make sure that they were being taken care of so Ryan could help take care of me. Ryan and I are both blessed to have those type of ppl in our lives. I may not have my mom but I do have my second mom Sally. Fiesty and Fun.....just like my mom was. Okay seriously now I am crying lol. I will just say that's from only having 3.5 hours of sleep in 3 days ( gotta love that cortisol....not).
I am really hoping to be home tomorrow but if not tomorrow I pray I am not here on valentines day. Even though no matter where I am I will feel loved by family and friends. I am typing on my I Pad so I don't think I can add pictures to my blog or you would see the beautiful flowers and cards and books I have received. Yesterday I was so taken back because someone I know through Facebook who is a friend of a friend but retired teacher at our kids school came by and gave me flowers, candy, a beautiful chicken soup for soul book ( she doesn't know this but it had special meaning to me because my mom was published in one) and a book to keep me busy. It was beyond sweet. I wanted her to be able to sit and chat but I would start coughing as soon as I talked so that will have to wait for another day.
Then.....in walks in my husband and daughter couple hours later. Man I have to figure out how to add pictures. I seriously almost cried. They looked like they were moving in lol. They brought me a late lunch and flowers, my coveted grapes and orange juice, coffee and then MY P UPPY MOLLY!!!!!!! Ryan had called ahead and asked and begged and they said yes for a little bit. Mind you Molly is only 2 pound Shih Tzu that doesn't shed. She was so happy to see me and I her. To me that was one of the most romantic gestures because it was so thoughtful.....a surprise ....and effort was put into it. Seriously I will always remember that....! I had a great visit with them but I knew they would have to go and pick up and drop off the boys for basketball soon. I am really blessed to have such a good family.
Right as they were leaving I got a delivery. I was really feeling loved. It helped too because the fact that I can't sleep on all this cortisol they are pumping into me I am here a lot by myself. My husband wants to be here more but it's 1 hour drive just to get here and then one back. Plus I really want our household to keep going because our kids are so busy. He constantly is telling me he feels bad bec I tell him to not come back. It makes me feel better that Sally and him can get everything done at home. He just ends up texting me right when he wakes up till he goes to sleep anyways. Lol. Anyways back to my delivery......omg they were the most beautiful flowers!!! As soon as I saw the card I knew who they were from when the front of it said "Farmer Rae" lol. That's a nickname a couple of my friends call me because when I first moved to the ranch I kept collecting all these bottle fed animals......calves.....lambs.....puppies lol.....it's a big joke that they think I need a skunk now or a giraffe. These two friends are always giving me such strength I don't even think they know how much strength they give me. I am very thankful for our families friendship.
So I may be in the hospital.....I may not be sleeping.... But I know I am loved. Not because I am here but because that's how I feel daily. I am hoping tomorrow I will be outta here because I am pretty bored. Ok extremely bored but I will stay till I am well.
By day 9 Ryan took me to ER and they said I had bronchitis and asthma on top of it. Three breathing treatments later and medicines, inhalers etc we were sent home. Next day even though I had been on antibodies for days I felt worse. Being in remission from Cushings Disease I still have low immune system being only 6 months post op from brain surgery. Everything else is a thousand times better though. For that I am so terribly grateful! The sickness part though seems to go on and on for me. End up having to stress dose cortisol (since now it's my friend not my enemy) because sickness eats it up.
I thought I would get better but I just couldn't breathe. Coughing so much and so hard I would vomit. Had to breathe really shallow and talk low to not cough. Felt extremely dizzy and not hungry at all. We ended up going back to the ER mid day since my MD was out of town this week. They admitted me into the hospital within 40 minutes. I have been here since.....laying in my hospital bed under that ugly pink blanket ha!
Good news is I am getting better. I am so pumped full of steroids right now. 160 mg cortisol daily. Breathing treatments every hour on the hour and some even in between, antibodies and fluids. Now on day three here I am feeling better even more so and have breathing treatments every two hours. I look a wreck but the only time I am up is to go to the bathroom or shower or I am short of breathe.
Something I learned is when you have Cushings that cortisol masks some things like auto immune problems or asthma etc bec the cortisol is naturally so high from the tumor that you just don't know it. So in remission I am finding out I have asthma.....maybe always have had it but it was masked. Well guys......bronchitis and asthma don't mix.....at all. Just trust me on this one haha.
We are on day 12 of being sick I really am feeling bad. Not health wise but bad that my family is having to keep on keeping on without me. I am very lucky to have the husband I have. He is so generous and kind in all ways and knows that this of course is out of my control. He always asks me "well if it were me in your place what would you do?". I would do anything I could of course but I definitely think I would be way more cranky than he is ha! We really lucked out too bec the day I got admitted Grandma Sally (Ryan's mom and my awesome MIL) was coming up to stay with us. It never ceases to amaze me how she just jumps right in and helps and doesn't gripe about it. With my mom in heaven it really makes me think that she somehow has a touch in her that helps Sally to be there for us when we really need it.....along with the fact she would just do it anyways. My mom would always come to the rescue like that. Anything for me or her grand kids....she would make sure that they were being taken care of so Ryan could help take care of me. Ryan and I are both blessed to have those type of ppl in our lives. I may not have my mom but I do have my second mom Sally. Fiesty and Fun.....just like my mom was. Okay seriously now I am crying lol. I will just say that's from only having 3.5 hours of sleep in 3 days ( gotta love that cortisol....not).
I am really hoping to be home tomorrow but if not tomorrow I pray I am not here on valentines day. Even though no matter where I am I will feel loved by family and friends. I am typing on my I Pad so I don't think I can add pictures to my blog or you would see the beautiful flowers and cards and books I have received. Yesterday I was so taken back because someone I know through Facebook who is a friend of a friend but retired teacher at our kids school came by and gave me flowers, candy, a beautiful chicken soup for soul book ( she doesn't know this but it had special meaning to me because my mom was published in one) and a book to keep me busy. It was beyond sweet. I wanted her to be able to sit and chat but I would start coughing as soon as I talked so that will have to wait for another day.
Then.....in walks in my husband and daughter couple hours later. Man I have to figure out how to add pictures. I seriously almost cried. They looked like they were moving in lol. They brought me a late lunch and flowers, my coveted grapes and orange juice, coffee and then MY P UPPY MOLLY!!!!!!! Ryan had called ahead and asked and begged and they said yes for a little bit. Mind you Molly is only 2 pound Shih Tzu that doesn't shed. She was so happy to see me and I her. To me that was one of the most romantic gestures because it was so thoughtful.....a surprise ....and effort was put into it. Seriously I will always remember that....! I had a great visit with them but I knew they would have to go and pick up and drop off the boys for basketball soon. I am really blessed to have such a good family.
Right as they were leaving I got a delivery. I was really feeling loved. It helped too because the fact that I can't sleep on all this cortisol they are pumping into me I am here a lot by myself. My husband wants to be here more but it's 1 hour drive just to get here and then one back. Plus I really want our household to keep going because our kids are so busy. He constantly is telling me he feels bad bec I tell him to not come back. It makes me feel better that Sally and him can get everything done at home. He just ends up texting me right when he wakes up till he goes to sleep anyways. Lol. Anyways back to my delivery......omg they were the most beautiful flowers!!! As soon as I saw the card I knew who they were from when the front of it said "Farmer Rae" lol. That's a nickname a couple of my friends call me because when I first moved to the ranch I kept collecting all these bottle fed animals......calves.....lambs.....puppies lol.....it's a big joke that they think I need a skunk now or a giraffe. These two friends are always giving me such strength I don't even think they know how much strength they give me. I am very thankful for our families friendship.
So I may be in the hospital.....I may not be sleeping.... But I know I am loved. Not because I am here but because that's how I feel daily. I am hoping tomorrow I will be outta here because I am pretty bored. Ok extremely bored but I will stay till I am well.
Subscribe to:
Posts (Atom)