I have a BIG mouth

I have a big mouth! So many times this week did my BIG Mouth help me though? I spent 5 days in a hotel this week with WIFI and a Jacuzzi. Sounds divine huh? Well I spent it half way alone, peeing in a jug, getting my blood drawn and not sleeping. When you live out in a rural place having WIFI is a treatJ

I went to stay at a hotel because I was testing for Cushing’s again. A Rare Disease that creates too much cortisol in your body. When I am in a “High” of this thing my body is creating I don’t sleep, I gained 12 pounds in 5 days, I am irritable (wouldn’t you be with 2 hours a night for days?) and my whole body feels like its under attack from stress. I had 12 tests and an MRI to complete so I decided I would stay in Redding to do them. Hey they have a Jacuzzi in the room (free upgrade got to love that) and baths help my super antsy legs during a High. Its important for me to test ONLY when in a high however so I went there to stay so I didn’t have to drive 2 hours there to drop off labs and 2 hours back every single day with no sleep. Ryan and I decided it was a good idea. This time around I told him I could do it by myself because someone had to work and take care of all of our animals. He called and text me all the time to make sure I was okay.

I decided I wanted to do this by myself this time. I didn’t want other people’s schedules to have to change. I couldn’t sleep anyways so being able to bathe or watch tv or yell at the pillow for not letting me sleep is more conducive to when you are alone.  I kept my chin up and told myself I can do this! I can do it alone! I am not scared like I was the first time around because this is a reoccurrence. I don’t need the hand holding as much. My MIL told me she would come up and stay with me but I declined. I get irritable and don’t want to take it out on anyone without knowing. Ryan would have done it too in a flash but I thought it was better for him to continue working. I will need him later for sure.

So, How is my mouth big and how did it help me numerous times? First I would like to say that when you are on day 5 of 2 hours of sleep and going to get lunch and bring back to the Rapunzel tower (what I called my hotel room since I locked myself away) the last thing you want to do is be scared. So I was sitting at a stoplight waiting to turn to go back to the hotel. A guy in a clown’s outfit that was looking pretty jittery started walking like he was going to cross the street. He came up to my car door, started pounding and trying to get into my car saying he needed a ride. I started screaming at him (swear my mouth was completely open screaming) and honking my horn over and over. Thankfully my car doors automatically lock. That scared me so bad that I wanted ruby red slippers to click two times and send me back to my little rural town of no clowns or drug addicts! Who was the first person I called? My husband lol. He told me to call the police. Thankfully this happened on the 5^th day when Ryan got a person to watch all our animals and it was the weekend so he could come up. I am thankful he came up that day. Besides missing him…I secretly was happy to have my protector!

I decided since I was up for days that I wanted to use my Big Mouth for good. I did a couple VLOGS on symptoms and also ones on where to find support for Cushing’s.. Might as well use what is going on with me for good. I really want to help others. It’s the one thing that makes me feel okay about having a reoccurrence and Cushing’s again. I feel such immense support from my Cushies too. They help me on a daily basis. Here are the two links to see the videos that I made.

https://youtu.be/9yBUYYIEkS8 Cushings Symptoms and my Symptoms

https://youtu.be/dfXx18pYInA Where to get support

https://youtu.be/PhIfFwHKChU When to test

I did have fun being able to connect with Cushies online and laughing with things that weren’t medically related. I was excited I had Starbucks! Hey we live 70 miles from the nearest Starbucks. I am not going to lie I had taco bell salad bowl twice too! My son Jackson would be so proud because he loves Taco Bell and I generally am not a fan. I did read a book and do a lot of Jacuzzi tub relaxing to try to help me sleep. I am thankful I have such support from my friends and family. I guess I say to myself I am doing this alone but I am nowhere doing any of it alone. I have a lot of support. If I said I didn’t want to be there by myself at any time I know some people who would have been there right away. People close to my heart.

So the last day I needed to get my Mri. Ryan came down late the night before. We went to the movie Trainwreck. Not a kid’s movie! Dang though it was SO FUNNY!!! I think I have a woman crush on Amy Schumer because she is so so funny. That movie cracked me up. I seriously snorted at the end of it. Yep! I laughed so hard I snorted. I admit it. It’s because my mouth is too big ha.

The weeks been long but its over now. Mri is done and today I found out I have another tumor. I do indeed have to wait for all my test results to come back but at least we have a target. I should be happy I have a target. The first time I was so excited I had a tumor. I know that sounds crazy but it was my way of verifying that I wasn’t crazy and that all these symptoms were real and came from this pesky thing. This time around I am not happy. I don’t want to have to do this all over again. Brain Surgeries aren’t my fav ha! I am going to be strong though. I am not as scared this time. It’s okay for me to have one day of breaking down, crying and being upset. Tomorrow though I will be back on my game! I have great support and that helps me a lot. I have God which helps me even moreJ I have things to look forward to this week so this is going to have to just wait.

This weekend is going to be super exciting. One…..I am going to an amazing ladies wedding! So excited for her. Even more excited that she asked me to make the cupcakes for it. This is a very cute couple that will seriously enjoy happily ever after. Secondly and my best ever thing is….MY KIDS COME BACK! They have been gone all summer at their other parent’s house. I need my teenagers. I love them and miss them so much its insane! I am going to be so excited! I can’t wait for the chatter to begin. I need to remember how to cook for 6 again and not 2 ha! They are my prides and joys my four teenagers and I can’t wait to see them.  There is always a silver lining. I just have to make sure that I keep the positive as my focus. I will too. I am going to beat this! I am not afraid! If anyone should be afraid it should be my MIL (mother in law) because when/if I have surgery she will have to watch all the kids. She should be very afraid haha! I know you are reading this…I love you!

To subscribe to this blog go to the top of the page and put your email in. You will receive an email anytime I blog. Also you can subscribe by Google+ and Bloglovin. Have a blessed day.

 

Dark, Scared and Stranded

15 miles of dirt road, rain, lightening, no service, and a dead battery. That is how my Bff, her kids, Ryan and I ended our night. When you live in the country it’s not like you can just wait for someone to pass you or walk a block to have reception. This was our night….I am glad we documented it just to keep us busy but it might of ended up being my favorite night of all times with my BFF.

How it all started is we were going to town to the Star Party to look at the Stars. The rain and lightning cancelled the get together so we headed back home. We live 15 miles down a dirt road. We are the first house so it’s not like you can just go over to the neighbors and use the telephone. The alternator went out so everything started to get dim and we were like “oh crap” because we knew we had no cell reception, especially in the rain. We literally ended smack dab in the middle 7 miles in.

It’s not like we could wait for a car to go by because it was late and also because no one is going to drive by. We only have two neighbors and it was 945pm. Our only option was for Ryan to walk in the dark (pitch black there are no lights) 7 miles to our house. It was going to take him a couple hours. I was so worried for him it was unreal but when you have a 5 and 7 year old in the car you just play it cool. He took two flashlights, bottle of water and his jacket and set out. Looking back it took 3.5 hours. Ryan got turned around once but we are so thankful he made it. 1am my knight and shining armor came to rescue us with drinks and cookies for the kids. I can’t believe Ryan made that walk up the hills and rocks for us. I was so happy to see him it was unreal. My bff oldest got in the truck and said “Thank you Mr. Ryan so so much. Are you okay? How bad was it?” Super sweet especially for a 7 year old who didn’t fall asleep the whole time we were in the car.

There were a lot of funny moments however. One of our phones started dying because we were letting the kids play on it and B said “just connect it to the charger”. We ended up having laughing fits because we were so tired and I told Laura we should blog about this for sure. We started taking pictures that made us laugh and then videos. I literally have not laughed that hard in forever! B said I sounded like a squealing pig which made me laugh even harder. Then somewhere in the three hours B said “SHHHH…I hear a lamb! Oh wait! That’s just my brother snoring!” I think so many things seemed funny since we were tired and kind of freaked out. When Q finally did wake up we were digging out glow sticks for him and he told us to “just turn on the lights so we can find them”.

The things that saved us that night in the car however were the drinks we had picked up for the kids, glow sticks we had for the Star Party and lifesavers for them to snack on. We really think it would have been a whole different experience for us and the kids to be in the pitch black with no light. I was very thankful for those glow sticks!

At once point Q had to go to the bathroom so we opened the door for him to go and voila we had light! B says maybe we can drive the car then. I jumped in the driver’s seat and the engine turned on. We were SO happy!!!! A couple miles later it died again. DANGIT!!! I don’t think I have ever moved that fast to get from one side of the car to the other. B then said “well that’s a relief I guess”. Pretty funny for a 7 year old!

I am so thankful for my husband that he was there. I don’t see Laura and I and the kids walking in the rain and lightning that far. He is pretty sore today and tired but he is my hero! Not just today but everyday! My hero! I don’t know how he still had energy today but he did.

It was definitely a night to remember. One we will never forget and one of many memories of laughing and freaking out too. All Hail Glow Sticks! I am totally keeping those in all my cars now.

Subscribe to this blog by putting your email at the top of the Home Page. You will get an email every time I blog. Also can subscribe by Google+ or Bloglovin (the app). Have a Blessed Day!

Mud Fights

What do you do when it’s your last day together for a while with your BFF? You have a mud fight in the reservoir of course! Laura and her (my) babies have been here for a week. I don’t even want her to go home but I guess her husband might be mad at me if she doesn’t show back up. We have done so much stuff this week it’s been fun. My favorite times although it’s all my favorite is when we are sitting at the end of the day having a glass of wine and just talking about life. I haven’t been blogging because I haven’t had the time. Don’t want to miss anytime with her.

Today we went to the Reservoir. Mind you Laura and I have been best friends since we were 12. We are totally goofy when we get together. The kids thought this was the funniest thing ever. Everyone started slinging mud like it was going out of style. The kids told us how our skin and hair would feel so much better from all the mud they were slinging at us.

 

think my 5^th child Mateo (Jacksons BFF) thought that maybe we had gone insane or that the one glass of wine we had last night was still somehow affecting us. We did get him into it though eventually. As you can see he has a mudhawk.

It was a great day. Its not even over. Tonight we are going to the star party with the kids to see telescopes as big as cars and hopefully see Saturn’s rings again.

Going back to chat with my friend. Had small amount of time while she showered since we kind of caked up her hair with mud~!

I

 

Enjoy some crazy BFFs pictures of this week…

Dancing with the Stars Perfect 10

I would have to say that this weekend as great! My MIL as I call her (Mother in Law) and I went to Dancing with the Stars Perfect 10. I love dancing with the stars but my MIL loves it even more. Ryan had asked me what I wanted to do for Mothers Day and I told him that I wanted to go to this show with my MIL. So that was our present plus a bonus dinner before the show in Redding Ca.

Sally, my MIL, got us a hotel so we didn't even have to come back that night which was fun. Ryan got stuck taking care of all the animals but I think he was secretly happy to have a day or two of quiet where he could go hiking etc.

I am grateful that I like my MIL. I actually get along with her really well. She is great company to have. We got in the car and off we went! We were all smiles as you can see.

We decided to go to the pool at the hotel before the dinner and show. First we had to eat because well....we were out! When you live far away from restaurants you use every excuse known to man to eat out!! We went to Red Lobster and had a great lunch. MMM....I hadn't been to Red Lobster in years actually. Hey lunch time specials there are not bad at all! Anyways back to the pool. We went to the pool and Jacuzzi and laid out some. Just know this this ghost white skin I have did not even like that I did that haha! Its pretty bad when you MIL looks better in a swimsuit than you do!! Sexy little thing she is! We had fun relaxing then went back to get ready for the show and dinner.

Dinner was great. Dessert was AMAZING though! We sat a table with two other couples and it was entertaining to say the least. Once people find out you live in a rural place I swear they look at you like you are from Mars or something. I have to laugh but MIL and I both like to people watch. We were saying whose outfits we like and noticed that there were A LOT of elderly woman there waiting to swoon over Val the main male dancer. I think I found some styles I definitely want to try and some I definitely don't ha!

Once we got the show we had to have Tshirts and Coffee Mugs . Yes I am one of those who has to have a coffee mug from everywhere I go! You should of heard the bickering (in fun) between MIL and I on who was going to pay! I WON!!! FINALLY!! Its not easy let me tell ya! (see that MIL!!!). We finally got to our seats which were not exactly where I thought they would be but was fun anyways. We had gotten tickets after it was already almost sold out. We could still see the stage, faces, abs (that's important) etc. The place was packed!

The show was awesome! They are just magical at dancing. I don't even think I could get my feet to move that fast if I was being hunted by a serial killer. They were so cool. I was excited because Rumar Willis was there since she had won this season with Val. She had a boot on her foot so couldn't dance but she sang many of the songs. I was really impressed by her sultry voice! She kind of sounds like the girl who sings at all the beginning of 007 movies. Amazing. The show was funny, sexy, fun, exciting and all that I was hoping it would be. We had a great time!

I am glad that we went. We also found out that the Moscow Ballet is doing the Nutcracker in November. I am buying tickets now! I am even more excited about that one! Side note. My parents used to take me to the Nutcracker in Germany each year and it was amazing. I want my family to experience that too.

The next day I think we were still excited from all the dancing. MIL got us a hotel room to stay at and when we woke up we came up with the brilliant idea of having popcorn for breakfast. To the movies we went! Decided on seeing Magic Mike XXL. I lost on paying! She got me back the whole rest of the day! UGH! I have already seen Magic Mike XXL with hubby because I love Channing Tatum and he is an amazing dancer. Lets just say this one was WAY better than the first. MIL had a smile on her face so I know she loved it too. We both agree we didn't really like the first one.

So popcorn for breakfast we had to have something just a TAD more substantial for lunch so MIL took us to Logan's Steakhouse. I crack up at this picture of her with a whole rack of ribs! Look at this tiny little MIL with all that food. Even the waiter looked at her weird. She said "I would like a whole rack of ribs".....pause...pause....pause..."oh and a box because 3/4 of this is going to my son". I think the waiter was relieved. The ribs look bigger than her!

It was a fun day. We did some food shopping and headed home. I love spending time with my MIL because she is funny and smart. We talk like friends. Not like I am married to her son. This is pretty nice considering how ppl usually talk about their MILs. It was a great weekend. I needed it. Thank you to my dear hubby who got us the tickets and thank you to my MIL who is stubborn as hell and wouldn't let me pay for much! I love you both!

Subscribe to this blog by putting your email up at the top of the blog. You will get an email every time I blog. Have a Blessed Day.

So Excited!! She is coming here!!

After this week of not so great news I am so excited because in a couple days my Best Friend will be coming for the week with her kids to Auntie Rae-Rae's Farm! You know how sometimes you just feel like you NEED something. I am so needing her to come and for us to talk and have fun.

I met Laura when we were in 7th Grade. I don't think we really hit it off at first but by 8th Grade we were best of friends. We have stayed Best friends throughout the years also. She has been there for me and I for her for almost every important event in our lives from Weddings, Births, Divorce (mine not hers lol), and even Losses like our mothers.

Laura in Front, I have my hand on my face (high school)

Add caption

This is someone who has been there for me through thick and thin. She is one that has been constant in my life. I can talk to her every day, every second or not talk to her for months. Doesn't matter because we always go back to the same ol same ol of being great friends. She has been my rock. She has always had my back but she has ALWAYS told me how it really is and showed me the other side too.

I think everyone needs a friend like this. How can you not love her? She is known as being shy but she really isn't. She is smart, sassy and fun. How many people do you know would go to Lamaze classes as the coach because their BFF husband was in Basic Training. She would! How many people would travel all the way to NYC to make sure she was okay after surgery to talk about Cushing's to a group? She would! How many people cry when you cry and laugh when you laugh. She does. She literally is one of the most important people in my life. I am graced to have known her for so long and know the God has kept us together as friends even though I have moved as far as Japan at times.

She takes awesome pictures and doesn't care how

We have the best memories. I still say to her that she called me a bad name in 7th grade. She still says that it was one of our other friends. She still says that she wasn't my bridesmaid at my wedding. I often tell her that she was at my second wedding and that's the one that counts! I still laugh how she was my Lamaze coach and I had to tell everyone, every single time that my husband was in Basic Training. All that just for Cassie to be born by C-Section. We always did cooking classes together. We were young and cheap though so we would always just buy a cook book and do full dinners for our families. This time is not an exception either...we have meals planned to make and she isn't even here yet. We are Foodies at heart. We laugh at each other and our kids all the time. She is always telling me about my teens and I am always telling her how she has her time coming. She has been there when my son had the biggest fit EVER in the history of life when he was little and I still swear I wont go back to that restaurant even though its been 10 years ha! We love sushi and have to have it! I cant keep writing because it will take me forever ha!

Its weird how life works. We have planned this whole trip for months and it just so happens that now is the time I need my friend the most.

I am too excited about the kids coming and visiting the Ranch. I have all these crafts and ideas planned because I want them to beg to come back each and every year. Makes her come back and I love my babies. Ok they aren't babies anymore but I love them all the same!

See each other even if it can only be for lunch going through town

I am sure we will blog some of our adventures. Stay tuned because when we are together craziness and fun often ensue and laughter is plenty.

Its fun to have a friend that you have known for over half your life. One that has been a true friend. I am literally counting down the minutes till she is here.

Tick tock...is it Monday yet?

To subscribe to this blog put your email at the Home page and you will get an email each time I blog. you can also subscribe by Google+ or Bloglovin. This week we will have awesome recipes and lots of pictures of animals to show so stay tuned! Have a Blessed Day

Cushings....Its BACK:(

I kept it a secret from everyone but my husband for almost 6 weeks. Then I decided I really needed prayer so decided to tell my friends and family. I am going to use my blog as an outlet today so turn away now if you don’t want to hear.

Its back but I am going to fight it.

Cushing’s is a rare disease. It is a condition that occurs from too much cortisol in the body for a long time.  I beat it once! I had pituitary surgery and went into remission 11.5 months ago. They took two tumors out and every day since then I got better. There are a lot of symptoms to Cushings like anxiety, depression, gaining weight even while dieting, insomnia, bruising, hair loss, facial hair growth, libido gone, bruising, high blood pressure, diabetes, buffalo hump, acne, loss of muscle, irritability, pot belly, round face and swelling in extremities. Basically it sucks!

From Novartis.com

I was in remission for about 11 months. I don’t know yet if my tumor is back or if cells were left behind that created me to get better and then 6 weeks ago for my symptoms to start crashing back into my life.

I went after surgery from only being able to lift 10 pounds due to muscle loss to being able to lift 50-60. I slept all night, I lost some weight, wasn’t irritable, bruising and hair loss stopped, Blood pressure went down to normal, buffalo hump got smaller and swelling stopped. It was the best thing I had ever done getting that surgery.

Now it’s back. Thankfully I had the time to be in remission to grow my strength back. I feel like God gave that to me so I could help others, learn more and get better. I am thankful because I can’t imagine going through this after surgery not being in remission as many people do. They have my heart because they are the ones that have to fight so hard.

Let’s be honest now though. I am using this blog as a way to think out my feelings. I am scared. I don’t want to do this again. I don’t want to put my family through this again. I don’t want the surgery again. I don’t want the symptoms again. I just don’t. Life isn’t that way though so I am going to have to do it again.  I am not having all the symptoms yet but I have high blood pressure again, brain fog, losing hair, sleep patterns are crazy, bruising, depression and anxiety and swelling.

Before I started gaining the weight

After surgery losing the weight

I am going to do this though with positivity. I am lucky because I know so much more now about diagnosis and how to get it. I am able to do the numerous tests and know what I will have to go through. I know what lays ahead of me. It might be medicines to control it if a tumor doesn’t show up on MRI, might be another pituitary surgery, Radiation or even a BLA. The one thing I do know is I can do this.

Before surgery

Two tumors out through the nose. (my supportive funny husband)

I don’t worry about myself or another surgery. I worry that I will be irritable and not be able to control it. People don’t understand that cortisol is like fight or flight in a person. It gives you the “feeling” of being chased by a bear. I don’t think that many people would be calm at that point. I worry that I will lose my strength or I won’t be able to sleep. Those were my main things I hated. The weight gain is horrible but it’s something I can deal with. Bruising I can deal with also. Anxiety not so much. Pain not so much.

Again though! I can do this! I have one of the best Endocrinologist in the world. He is the leading specialist in Cushing’s and I fully trust him and will follow what he tells me to do. For now I will put myself in God’s hands and in his hands.

I kept this a secret for 6 weeks. For anyone who knows me knows that is hard for me to do. I wanted to make sure though before spouting off about it. A good friend of mine is out of remission too. I just kept praying for her. Its weird how that happened but in a weird strange way it’s comforting that we can at least talk about it. When she told me about herself….I already thought I was there too but still wanted to wait till my doctor told me before telling the world that this is happening.

I know this is all over the place but I guess I was worried most about my Facebook group Cushings!! Where there are 1100 Cushing’s patients on there that I try to help. They all know I am in remission and I didn’t want to have them not have hope. I was worried about letting them know. Scared actually because I want them to know there IS hope and there is a light at the end of the tunnel. I have grown so much in the last year. I have gained knowledge, found friends, lost friends, knew who really had my back and who I could trust. This disease to me helped me I guess. Helped me to know what was really important in my life. My family, my friends, and my animals.

This time around…I know more. I am going to beat this! I am going to fight until I am in remission again. I am going to stay positive along the way. I may have my bad days but I will have 99 percent more good days. I am going to take Cushing’s and say goodbye to it once again…..forever! I am going to beat this! You watch!

 

If you want to know more about Cushings or see real people with real stories, blogs, videos etc look at www.cushingstories.com . If you have Cushings know there is support out there and also financial help. Email me anytime at Cushingscountrygirl@gmail.com and I will help you in any way that I can!