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!

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Please go support this campaign by Cushingstories.com to increase Cushing's awareness.  Once we get 100 supporters (by February 22, 2015), our campaign will be forwarded to celebrity Thunderclappers to pick causes they care about and tweet to their followers. Its free and easy as just clicking a button. I can see who has followed it so please let me see your smiling face!

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Allergies and Basketball

First off this was a great day because we didn't have to get up at 445am to take Joshua to Basketball practice because the JV and Varsity have games tonight.

Jackson and Cassie had Dr appts so I drove them to Canby to see our family Dr. Dr Edmonds is an amazing Dr to me. He treats our whole family, was the one to diagnose me with the Rare Disease Cushings and is so nice to our kids and really listens to them. I love having him as our country community Dr.

Jackson had to see him because when he was coming back from his mothers on Christmas break back to our house he had a headache and took some of her over the counter Migraine medicine. Well needless to say we (all three parents) were all worried when he boarded the plane starting to get hives and his lips blew up to four times the size they are. Thankfully he had Benadryl and all ended up okay. I made an appt that day to get allergy testing. It wasn't something we ever wanted to repeat again. This is Jacks Shoulder and lips. (he said of course I can use this).

Jacks hived shoulder

Jacks lips...no its not duck face

After seeing the Dr we found out that he is highly allergic to Aspirin. So we are all going to be VERY diligent on that. He said the next time his throat could close because he has such a bad reaction. We always give him Tylenol based stuff at our house so we never knew he had this problem. The Dr talked to him a lot about reading the labels on everything. Being contentious of taking meds from anyone or if they are mixed with others that could be aspirin. A lot of cold and flu medicines have that in them and migraine medicines also so we will have to worry about that. Once I got home after taking them back to school I went through any meds we have to make sure. I am glad we found out though. We know that it is in the top 5 for allergies. It cannot go away by taking small doses like some allergy places will do. He said its as serious as a peanut allergy so to be very careful.

Jack dressed up for BBall at Drs

Cassie was able to go in after wearing her back brace (from her cart accident) and finally get it off. We had to do an Xray and exam but she is able to now not have it. She still has very limited activity for 3 more weeks. She was so happy to have her brace off and be able to bend finally. We will be starting physical therapy this next week for a couple months to strengthen her back again. I am just glad that her fracture has been healing properly. We also got medication for her because she has ovarian cysts. Those are so painful and I feel bad she gets them. Its hereditary and I got them at her age also. PAINFUL....not a good thing to have pain in the stomach all the time. All in all we ended up getting everything done.

Cassie happy her brace is off

After taking the kids back to school I came home to bake brownies and deal with some school things so I could  be back at the school by 330 to watch Josh and Jacksons basketball games. Ryan was to meet me there at 330 as he was working.

The games I was happy with. We won both games. Cardinal pride was at its finest as usual. Bake sale went off great for the Junior Class. Once again I swear we had our kids coming and asking for money every two seconds to eat. All four kids were there. Jason only got to see the last game as he has basketball practice after school daily. I was proud of my kids. Josh and Jack both played well when they were in. I love being able to cheer on everyone! yelling for all the kids along with mine. Its an exciting time in the kids lives and I am happy we can be there to watch it. Cassie was hanging with her friends. Jason after getting bunch of food was sitting with his and the other two were playing. Next year will be great because all four kids will be playing on the same day. That will make things so much easier and hey...money saving because they wont have to pay to get in the game haha!

Josh shooting

Josh JV basketball

Jackson happy playing

Jack practicing his shot

Running Fast to get shot (Jack)

All in all it was a good day. I am glad that we have a good Dr., a good school, a good life. I love sitting with our friends on game days and all of us cheering on each other kids. This community may be small but its definitely a strong one.

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Question: Do you have a family Dr? Or do you go to whoever is available at the time?