"5 Things Every Person Living with a Rare Disease Understands"

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

Rachel Co Founder of Cushingstories.com and Blogger

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?

Seriously! How did this happen?

Its Friday! YEAH!

I love Fridays! Its the end of the week and its usually our family night. We all stay up late and spend time together but best thing is....we know we can sleep in the next day! Woo hoo I love Fridays!

After the kids were home from school and basketball practice I decided that today we would go through all our clothes once again. I swear the kids don't ever stop growing. How did this happen again? How did we end up with so many clothes and they aren't fitting? Our youngest two ..Josh and Jason (both 14) have been growing leaps and bounds this year. Shoes and pants are constantly going to the thrift store or friends. Joshua is 6'1'' and Jason is 5'6'' but it took him forever to grow. Both of their legs are super long so Jeans become close to high waters a lot. Always shopping for new pants.

Josh and Jason my 14 year olds

Thankfully Jasons mom also does some shopping for him too which is nice when he goes to visit. Its helpful. As I had said before Jackson and Jason are biological brothers. Cassie and Josh are biological siblings. The kids don't know the difference though. They are all ours to us and the kids don't view each other as step siblings at all. You can tell because laughing or fighting is all the same between them all lol.

Whelp with some moaning and groaning mainly from the boys we went through all their clothes. It all started with Ryan going through all his pants to give to the thrift shop. I guess I should add we love our little thrift shop for the simple fact that you can donate there and all the proceeds go to our small community pool. We ended up between us all with 6 garbage bags of good clothes for others, one bag that can be turned into rags, and a couple of new things that can be given to our family members. It was nice to do this.....even though we have to do it often. It was pretty funny when I was in the laundry room and Jackson told me to come find Cassie. She was hidden under the pile of clothes. Kind of easy to find someone who is squirming and laughing:)

Growing up we always gave our clothes to others. I am of sound mind that after you wash something its not new anyways. If we get hand me downs that we like I am all for it! Kids grow fast. Why buy 40 dollar T-shirts or 150 dollar pants. Don't get me wrong we do have some of those things but that's only if the kids work and save their own money for certain items. I want them to like their clothes otherwise to me its a waste of money because they will not wear them. At this age its hard for others to buy them clothes too. I remember being picky as a teen but our kids have to learn to not be that picky. Its about function over fashion. Does it fit? It is going to keep you warm? Is it comfortable? Ryan's favorite T shirts are the super hero ones that are like 5 dollars. I have shopped many times from Goodwill or thrift stores to find awesome things. The shirt I get the most complements on was actually a 2.00 find at Goodwill. We do love others stores like Zumiez, Lane Bryant, Torrid, Hot Topic, Etc....

So YEAH!!! We are cleaned out again and can figure out how many shirts and pants everyone has to get whoever has grown out of things caught up to the others. Somehow Josh always ends up with less clothes than anyone else because he is growing leaps and bounds. So today will be spent ordering him some new clothes online. That is one hard thing about living on a ranch and hour or more away from stores. So Amazon is my best friend. Having Prime Shipping is my second best friend. Whatever you need to your door in just two days. Wow! Saves a lot of time, gas and money.

After doing all this the kids were hungry. Because Jason's teeth were still sore from getting braces yesterday we decided on homemade spaghetti and meatballs. Its a super yummy good recipe so I thought I would share my meatball recipe. The sauce you can use homemade (mine is canned from this summer still) or you can just use Ragu or Presto Sauce. I decided to take pictures too so you can see how yummy. We had dinner which is always our family time. Then we watched a movie together. By the time all that was done it was 1230 and everyone was very ready for bed. I love spending time with my family. Its something I hope they always remember and also something I know I will never forget. Its fun to hear about their days. To have them ask for our advice on things. Its not always easy things to answer either. Just the fact they ask though really makes my heart swell from joy though.

Here is some Pics and then the Meatball Recipe so you can enjoy it in your own home...

Finished Rae's Meatballs

before all stirred together

Rae's Meatballs
3 pounds ground beef (remember we have a large family and I want some for next day)
3 large eggs
1.5 cups chopped onion (we like purple)
1 tablespoon of oregano dried
3 tablespoon basil fresh
1 tablespoon parsley fresh or dried
3 teaspoons salt
1 teaspoon ground pepper
1.5 cup of parmigiano- reggiano grated
1-2 tablespoons of diced garlic

Take all these ingredients and mix together. I just use my hands or a wooden spoon. After fully mixed take two Tablespoons of mixture at a time and roll into balls. Set on plate. After all the mixture is in balls take over to your sauce. Sauce should be on medium heat in pan. Put one by one meatballs into the sauce. Do not stir. Keep on medium heat for 20 minutes covered. After 20 minutes gently stir the meatballs. They should be rising to the top of the sauce. Cover 15 more minutes and Voila its done. Scoop sauce with meatballs over cooked Spaghetti. Add little basil and shredded parmigiano on the top. Serve:)


Hope you like the recipe and try it.


Sauce before I put meatballs in

Finished Product...YUM!

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Question: When you outgrow clothes or decide you do not like them anymore.....what do you do with them?