Remission, MY RANT and help

It’s been a crazy good month since my Brain Surgery. If you don’t read my blog often I am in remission from Cushing’s Disease. It’s a Disease that over took my body. Gained 120 pounds, lost tons of muscle and have hard time walking sometimes, ended up being pre diabetic and had high blood pressure and the list goes on. All because of a tumor that grew on my Pituitary in my brain.

Just as I started writing this blog about my recovery and how tired I have been I got an email from my Doctor with my results for one month testing. I am still in Long Term Remission! I literally stopped typing, took a deep breath and started to sob. In a good way!

You see this is my second Brain surgery in two years. Recovery is long and hard but worth every minute of it. I got from never sleeping before to always wanting to sleep. I go from no pain to being in a lot of pain. Sounds opposite right like I should be upset that I am in more pain or so tired I can’t keep my eyes open after 9pm but its remission! It’s my body starting to recover and starting to get stronger.  I was in remission the first time but it was partial so it only lasted 10 months. I was happy for that too as I could get stronger. This time I knew though that when they found another tumor if they didn’t get it out that I would be on medicine for the rest of my life and not be in remission. This was something I dreaded and did not want.

I am in remission. I am in remission. I have to keep saying that to myself. I just can’t believe it still. I am going to slowly get healthy and happy with my body again. I am so thankful for everyone’s prayers and thoughts for me. It’s been a long hard road and I am thankful to be on the other side. Now my thing is to continue to help as many people get to that other side also. Cushing’s is not an easy disease. Tumors are no fun especially when you have a Rare Disease that makes it so you don’t get diagnosed right away. Did you know the average person getting diagnosed for this is 8 years? 8 years! It’s too much damage on a body. I have had it at least 5 years now and finally got the right diagnosis and 2 surgeries later I am finally on the other side.

Cushing’s creates your body to go crazy. Weight gain, Buffalo humps, Moon faces. This is all caused by excess amount of cortisol in the body. It’s not because we are fat or lazy or eating too much. Let me show you an example. Here are two before and after pictures. The ones on the left are the day before my surgery. The ones on the right are my one month mark (in the pink sweater). Do you see the change? I did nothing different that I normally do. It’s just the tumor is gone and cortisol is not sweeping through my body like a crazy person anymore. Did I eat less? No. Am I exercising? No. 3 out of the 4 weeks I was in complete bedrest so definitely not exercising. I guess the one thing I want people to know is…

When you look at someone just know they might have an issue. It’s not always their fault why they look a certain way or act a certain way.

This disease has created me to have to be humble and to really dig deep within myself to keep the real me still there. It’s not easy when you gain 120 pounds in 2 years. No matter how much dieting and exercising I was doing. It’s not easy to lose your strength and have to ask your husband or kids to lift something for you because you can’t do it. Not because you don’t want to do it but because you literally can’t because of the muscle wasting. It’s not easy for your body to start doing crazy things like not let you sleep or make it look like you don’t have a problem because one day you feel totally fine and the next day you don’t want to get out of bed. Let me rephrase that. You WANT to get out of bed but you can’t.

I am so thankful for my friends and family. They have supported me like no other. Sad fact is there are so many people going through this or similar stuff like this and they don’t have that support system. That’s why I created the group “Cushings!!” on Facebook. A place for people who have been diagnosed, are searching for diagnosis, trying to learn about Cushing’s or are in remission or out of remission again. Everyone needs that support system. I promised myself the first time that I went into remission I would dedicate a part of my life to help others with this. Am I a doctor…..not even close. I am however a friend who wants to help. So if you are reading this for the first time and you want to talk ….I am here for you! I will always get back to you even if it takes a day or two. You do not have to be alone.

As always I started this blog going in one direction and ended up going in another. This is how you know my heart. If you are someone needs a friend to talk to about Cushing’s feel free to contact me.

You can email me at Cushingscountrygirl@gmail.com or Join my facebook group “Cushings!!” and private message me at any time and also get a lot more supporters in your corner! Lets not do this alone. Its not easy, I know…..so lets do this together!

 

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Rant...As a parent have you ever had to.....

So I have to laugh because my Mother In Law is always telling me that I should write something "not as positive" on my blog so ppl know the realness of parenting four teenagers. I haven't really had anything to write about that wasn't that positive lately until now ha! Let me tell you the trials and tribulations of parenting.

So my son is in 4H. This is something he wanted to join and not only did he decide he wanted to join one of the clubs in 4H but he wanted to join 5! We say okay its going to be a lot of meeting and work. He agreed he wanted to do this all so we went all in. We would be helping him do Shooting Sports, Leadership, Horse, Beginners Beef and Cooking.

So lets skip to Beginners Beef where we asked him if he would like to raise a Steer. This would be really costly to us but then he would have this project, show it at fair and sell it. He would pay us back for the Steer and all the feed and then keep the remaining money for himself. We were excited because this gives him responsibility and also money for himself after all the hard work. We talk to our Ranching friends.....he goes there and hand picks his Steer out. We schedule for drop off and Voila he has his Steer! This is a big thing so we asked four times to see if he was sure this is what he wanted to do.

Fast Forward. Steer is at our ranch. We have all the Hay and are driving to go get the Grain that it will need for the month. As we are driving our son tells us that he is actually not interested in having a Steer. The Steer that is 1500.00 and we already hand picked and the ranchers we got it from already took time to bring it to us. Goodness. I think Ryan and I seriously didn't know what to say. What happened to the excitement that was there two days ago? Mind you we had asked him FOUR times to MAKE sure.

So then its up to Ryan and I to decide what we are going to do. We ask why he doesn't want the Steer and he said he is bored with 4H and doesn't want to do it. We ask why have things changed in just a couple days and why hadn't he spoken up before we decided to go buy a Steer. We think during the first day he has the Steer he saw how much work you have to put into it because his mind hadn't changed till then.

Side note...A Steer doesn't help out our family at all. If it was a Heifer we could breed it or eat it but a Steer is solely for him to raise, grow, show and sell.

The car was just quiet as we are trying to figure out what we are going to do at this point. We are a family that once you start something ....you finish it. You have to try something once and if you don't like it then you don't have to do it again. 4h is only half way done. I think we were quiet because well it kind of makes you perplexed because as parents you are running your child around to make sure they are at every event and doing what they need. We already bought the clothes for 4H, paid all the fees, found how to get the animal he needs to show and sell. Our minds were racing. Now what? We have a 1500.00 dollar animal that will cost 4,000 dollars by the time we are done. Its not something we would get as a family because we aren't going to sell it. We want ones we can breed or eat later.

So as a parent what runs through your mind. Do we make him do it anyways? Do we put money into something he may or may not hate? How do we show him responsibility? How do we talk to him about not being passive and speaking up so this kind of dilemma doesn't happen? Do we talk to the Rancher and see if he will take the Steer back? Does he stay in 4H? How do we have our child be happy and be responsible? What lesson can we all learn from this? How do we teach him how frustrating this can be and how we could of prevented it all together?

So after a lot of Ryan and I talking, we decided he needs to finish 4H. It was his decision to do 4H and once our family starts something they need to finish it. Does he have to show an animal to be in 4H? No. So we called our ranching friends and talked to them about what happened. They graciously said they would take it back. If someone isn't really into their animal they might not take care of it the way it should be. That wouldn't be fair to the animal. Of course, we never would of let the Steer not be taking care of but I understand the point. Thankfully they said they would take it back. Putting 4,000 dollars into an animal that you are having a kid HAVE to take care of to us seems silly. So we are still teaching responsibility but not having it be taken out of our pocket. Our son will still have to help with animals, learn about them and work hard. It just wont be with his own. We also talked to him about being passive and speaking up for yourself. Don't say things you THINK people want to hear. Say what you want and don't want. Especially when asked four times if you wanted a Steer and each time was a yes lol! He had to call the Rancher himself also to tell him why he had changed his mind. We feel he needed to explain himself because it is teaching him something about responsibilities especially when others are helping you out.

Thankfully this is one of the many learning experience we will have with ALL the kids as we go along in life. If you don't have these bumps in the road.....you aren't learning. We had to really think about how to handle the situation. No yelling was done. Some head scratching was but it turned out all right. It is a learning experience for us all. Don't you love parenting? I do.....its new and different each day. Especially with four teenagers. Don't worry tomorrow we will have some trial and tribulation with another one of the kids. Its always one of the kids learning a new lesson in life. :) Who knows which one it will be but it will be someone haha.

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No Cell Phone Sunday and RANT!

I am a mom of four teenagers of which all of them have Cell phones. Being a blended family this helps with the other parents being able to get ahold of the kids. Helps when they are away or at sporting events etc. I personally think my whole family probably uses their cell phones more than they should....this includes me.

A little rant....Now a day teens really don't have to wait for anything when it comes to communication. They don't even have to pick up the phone to see what time their game is the next day if they forgot. All they have to do is text. I am a texter too, don't get me wrong but so much is lost in the translation when you cant HEAR the tone. You can constantly put ":)" or " lol's" to make sure others know you aren't upset. Realistically though tone is really lost. How often in this society do we pick up the phone anymore and actually call someone. Its so much easier now to text because you are busy and don't really have time for a long conversation. Seriously....how many of you have text while you are on the toilet? HA! Ryan and I have noticed for awhile now that our kids seem to even be in better moods if they aren't on their phone that much. They are paying attention and don't get restless because you seem to be interrupting what they are doing. And man....watch out if they get a girlfriend/boyfriend because then they swear their significant other will think they are mad if they don't respond. We seriously have had to set a lot of ground rules in our household just to make sure that the world is  going on around them and they aren't paying attention.

Its interesting to me this generation. Maybe I am old at 38 but I remember when we had to run home after school to see if that person we liked called. Who remembers picking up the phone just to see if it had a dial tone because you hadn't gotten that call yet :) I remember thinking I was just going to die if I didn't have a pager. A PAGER PEOPLE! And this was just to get the number to actually call that person ha! We had long drives where we played games in the car or talked to our parents or actually looked at the surroundings. Now I am not saying that we still don't do that but I really think that it has gone to the point where kids are really looking down at a screen most days. IPad....Cell phones...computers....Ds....handheld gamers....etc. I am one of those ppl. Heck I even read books on a Kindle now. Now a days kids think if they haven't gotten a text back to a question that the person must be mad at them. Everything now has become instant and less and less we are having to learn patience. My son once called a house phone and it gave the busy signal. He thought that phone was disconnected because he had never heard a busy signal before. He is 16.

Are cell phones bad? No...I happen to really like mine. I love to post things on Facebook and see what my extended family is up too. I love editing my pictures on Instagram to make my yearbook I do for my kids each year. I love to see Pinterest Ideas that make parties, cooking, decorating more fun. Uhm...I love to Blog! I am always writing emails answering questions from Cushing's Patients and I love to work on my website. I live in a small town of 250 people and advocating for Cushing's just wouldn't work. The internet reaches far more ppl in a day than people in my own town. I text, I Twitter......and all these faucets I love. I usually do these things when the kids are at school but I do get on my phone.

We have a few rules in our household for our teens which helps us.

• At bedtime phones are charged in living room so they can have restful sleep
• IF disrespectful we take phone for 24 hours
• If homework not done we take phone for 24 hours
• No phone use at school unless on break
• Meal times are spent as a family at our table with phones off
• Family time is just that....family time. If we watch a movie no phones
• Long trips you get your phone one way so you can see scenery the other way
• No talking to us with your headphones on
• If we have to shout your name for you to hear us then your music is on too loud

Now we have a new rule. No cell phones on Sunday. Ryan and I really thought about this and think its a good idea. A couple of our friends do this and are having great reactions from it. The kids don't even complain anymore. We brought this up to our kids at dinner and we all agreed (with a little bit of "Are you serious?) that Sundays we will not be on our phones or computers or gaming. The kids gave us grief too of "then you cant blog mom" or "no shopping for bow hunting stuff dad" but all six of us are going to do it. Only part of the phone that will be used is if someone calls and we are home. Sundays we are going to do it the old fashioned way. Are you willing to try this? I guess in this day in time its kind of drastic....but is it really?

I challenge you to take a day with no phone....or see how long you can go without your phone. You might think its longer than it actually is.

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