9 Things not to say to someone with an invisible illness.

      In honor of Dysautonomia month I thought I would share a list of 9
things people with invisible illnesses do not want to hear. I have heard these so many times myself regarding my illness, and let me tell you these remarks do not help in any way! I have POTS ( Postural Orthostatic Tachycardia Syndrome) and EDS (Ehlers Danlos Syndrome) Both are invisible to others but my daily struggles are very real. As are the struggles of other invisible illnesses. OK lets get down to business! Here they are in no particular order of importance.

IT COULD BE WORSE.......
     I absolutely hate this one. Makes my blood boil. You are correct it could be worse, but that does not diminish what I am going through or make it less difficult to deal with. Just because other illnesses are worse, it does not all of a sudden make my illness better or easier to have. Down playing my illness because others have it worse is not helpful at all. Everyone faces battles differently.

YOU DON'T LOOK SICK....
     Well gee thanks. I am glad that I don't look sick but, that does not change that I am in fact sick. Just because I don't look it doesn't mean its not there. And knowing I don't look sick doesn't make me feel any better in any way. You would not say to someone who lost a loved one "You do not look like someone who suffered a loss." So why say it to someone with an illness?  It is not a compliment.

YOU ARE WAY TO YOUNG TO BE SICK......
     Age is completely irrelevant to sickness. Anyone at any age can get sick. I get this one a lot, being 32. Honestly it makes me feel guilty and embarrassed that I am sick. Being young does not automatically mean being healthy. 
     I am going off topic for a second to share a story with you that happened to me at the fair. We went to our local fair and my daughter wanted to see the swimming pigs. It was very hot out. I had used all of my energy and power to go and not let her down. I found a bleacher seat and sat with my daughter 20 minutes before the show started. I wanted to ensure I would have a seat and not possibly faint and ruin my daughter's fair trip. I was already struggling in the heat. Hot temperatures cause my symptoms to be worse. So we sat and waited for the show to start. Little Miss Sass sat on my lap.  As it got closer to the start time, people started to pile in. Our bleacher was full. A lady maybe 40 with a crutch and aircast on her foot came over to me and said "Would you move so I can sit? You are so young and healthy and don't need to sit." I told her I too needed to sit. She couldn't see my rapid heart, or that I felt as if I couldn't breath. She didn't see my fear of passing out and failing my daughter. She then said as she pushed into me and squeezed onto the bleacher where there was no room "I have a fractured foot and need to sit more than you do you can move." There was a nice elderly couple who squished over to make room for us. I replied that I too have a fractured foot but you cant see it because I don't have a huge air cast. I pulled off my shoe and showed her the insert  that allows me to walk without a cast. Then I said I have a heart condition you cant see which requires me to sit to not pass out! She said something in return but I ignored her and enjoyed the show with my daughter, despite being stuck like a sardine next to this arrogant woman. Many assume being younger means healthier is my point to sharing this story with you. Moving on to my list.....

I WISH I COULD LAY AROUND ALL DAY....
     What a slap in the face!  Yes, because it is so nice to miss out on everything and have to lay around because of your illness.  I really love that I have to stay in bed while my child plays outside with her father and I cant participate. I love not being able to do the simple things others take for granted. Such a blessing.

IT MUST BE NICE TO NOT HAVE TO WORK.....
     People with chronic illnesses are not lazy and would love to be able to work. To have a sense of independence and generate an income. So no, having a illness that prevents you from working is not nice.

EXERCISE MORE AND PUSH THROUGH....
     Exercise is very important to everyone and we should all be doing it. I agree with that. My heart rate hits 135 just from standing alone, So working out is not as easy as some may think. Many start with a rate of 75  I am starting double that. I exercise to the best I can but there is lots I can no longer do. It is not a matter of not wanting to, its a matter of not being able to. If I "push through" chances are I will faint! I will also feel worse the next day for pushing myself to do what my body is no longer capable of.

THINK POSITIVE......
     I am a positive person and I try to see the bright side of things. I have tried to ignore my illness and pretend as if its not there.  It is not a mind over matter thing. Telling someone their symptoms will go away if they think positive is not helpful. It can not be controlled by thinking positive.  I am positive of that! lol

YOU SHOULD TRY......
     Let me stop you there, don't you think they have tried it all? They don't want to be sick so have tried everything under the sun to get better. They have tried all that has been offered from their doctors and medical professionals, as well as things seen on support groups. Unless you have the illness or are a medical professional you should leave this one alone. 

YOU NEED TO GET OUT MORE.....
     This is basically a guilt trip. A person with a invisible illness knows this. You are just stating the obvious. The obvious they cant do! This makes them feel guilty because they cant get out more. If the could they would. They are doing the best they can and doing what their body allows. So pointing out things that they missed or saying they should make it a point to attend something is just hurtful and putting them in a tough spot.

 So there ya have it! My top 9 things of what not to say! Til next time
 xoxo

I am a Potsie!

     Hi all, so many of you do not know this about me, but I am Potsie. "What is a Potsie?" you ask.... Well its a group of people who suffer from POTS. I happen to be one of them. Up until now I have not gone public about my condition. To be honest I have not yet wrapped my head around it. I was embarrassed and unwilling to except this as the new me. Since Dysautonomia awareness month is October I figured it was time to share my story with you all.

      First off What is POTS?

     POTS is an acronym for Postural, Orthostatic, Tachycardia, Syndrome. Pots falls under a form of dysautonomia. Like all dysautonomias , POTS is characterized by dysfunction of the autonomic nervous system. The autonomic nervous system controls many "automatic" functions like blood pressure, heart rate, blood vessel and pupil diameter, movement of the digestive tract, and body temperature.

https://www.youtube.com/watch?v=ch6ipV3M4yo
    
 Symptoms:

     One of the main symptoms of POTS is orthostatic intolerance. This is because the autonomic nervous system is not functioning correctly. Constriction of the blood vessels that normally occurs during the sitting to standing transition are decreased or not there at all. The vessels not constricting properly leads to blood pooling in the lower extremities, resulting in a shortage of blood to the brain and heart. The heart beast faster trying to make up for the lack of blood. This causes tachycardia. Usually a POTS patient will have a spike of 30 or more beats per minute from sitting to standing. The shortage of blood causes dizziness, light-headedness, and potentially fainting. 

     Symptoms seen in POTS are:
* fatigue
* headache
* heart palpitations
* exercise intolerance
* nausea 
* brain fog 
* shaking
* syncope
* coldness and/or pain in extremities 
* blood pooling
* chest pain
* shortness of breath
* hot flashes 
* abnormal sweating 

     POTS can strike at any age, gender, or race but, it is most often seen in women of child bearing age. (15-50)  In fact 80% of people who have POTS are female.

     The cause of POTS is not always clear. However it is thought that viral illnesses such as Lyme or lupus, pregnancy, trauma, or surgery could be the cause. Many often have symptoms begin after such. Sometimes no underlying cause can be found. Many suffer from POTS but still little is known about it. It was first discovered in 1993.

Treatment:
     Some treatments are medications such as Midodine, Fludrocortisone, or beta blockers, increased salt intake and drinking lots of fluids. Some POTS patients have to get I.V. saline infusions.

          I was first diagnosed in March of this year after many doctor appointments and un-answered questions. I started having symptoms years back not knowing it would lead to this. I would get light headed,  very dizzy, short of breath, chest pain, and palpitations. Many doctors just ignored my concerns and said That I just had anxiety and prescribed anxiety meds. I knew something wasn't right so I continued to try and find answers. Every time being told it was just anxiety and not to worry.  Summer of 2016 I fractured my right foot and had to stay off of it for a while as it would not heal. Once I started to get move active again. I noticed that I couldn't walk 10 feet without shortness of breath. I had a few black out episodes which was blamed on dehydration.  I was a super active person before the fracture so all this struck me as odd. I started to become aware of my heartbeat and noticed it was faster than normal. I made an appointment with my new primary care doctor in Nov. She took my concerns seriously and ordered a ekg. It came back normal. Then she had me wear a halter monitor. It showed periods of tachycardia. beats up to 160 per minute. She referred me to a cardiologist who ordered more tests. A VQ scan to rule out blood clots, and a stress echo. The VQ scan was normal. During the stress echo he noticed that my Blood pressure went dangerously low and my heart rate spiked during the transition to standing from sitting. He stopped the stress echo after 2 minutes of treadmill walking because my heart rate got too high. That was it I had my diagnosis. I was so happy to finally have a diagnosis and a cure! I did not know what POTS was. I never heard of it so I assumed it was a simple take this and boom my life was back! Then he said " I wish I had better news for you or that I could go in there and fix it but I cant." He proceeded to tell me that there was no simple fix, no silver bullet. He prescribed a beta blocker to keep heart rate down and told me to up salt and water intake and sent me on my way. I took the news very hard. Became shut down. I just wanted to be able to run with my child, take the dogs for hikes, go on dates with my husband, and just be how I used to be. I tried the beta blocker, than another, than another. Every time my blood pressure would go way too low. My cardiologist said he couldn't offer anything else so sent me to a specialist. More tests and meds I couldn't tolerate. I am in a better place mentally now but still have my moments of despair and anger. I desperately want my old self back but I know I am still me and POTS didn't change that. As of now I drink banana bag I.V. solutions on really bad flare days and I increased my water and salt intake daily. Some days are better than others. I am learning to adapt to this condition and learning my limitations. I have symptoms daily and have had to miss out on a lot of things. Things I once enjoyed I can no longer do but, I know "this too shall pass!" At first I felt defeated but now I know I will defeat POTS.  I may always be a Potsie or I may not but I know for now, I am going to fight, be happy, and enjoy life! I know sometimes this will be tough but I also know I am stubborn as nails and will push through!

Til next time xoxo!
 

I posted this picture on social media. Everyone seen a  happy mom with her little girl and dogs,and that is true. What they didn't see is this mom who had to stop every 15 feet to catch her breath, trying to hide her symptoms from her child. They didn't see my pounding heart, and the blood pooling in my feet causing them to be blue. They didn't see the pain or dizziness I hid the entire time so that we could enjoy the beach as a family. They didn't see that it was almost dark because, by the time I felt well enough to go it was almost night. Invisible illnesses are there and real. Just because you do not see it does not mean its not there. Look deeper and you will see.  Be kind to others. You never know what battle they are facing!

A day in our homeschool life, how it all started?, and an experiment!

      Hey there, so for this post I thought I would share what a typical homeschool day is Like for us and how we started this journey.  First let me show you our homeschool room. I scoured pinterest for inspiration and put together our very own homeschool room. There are so many elaborate, awesome, rooms out there. We have a simple school room but it works for us.

reading corner

Organization shelves. Each cube is a different subject. We use colored folders and dividers to organize the work for each subject.

Her work area. The ball helps with her concentration and posture.

  A little background on what led us into our homeschool journey....

     I started homeschooling Little Miss Sass after kindergarten. She went to a small, private school for K. They were great to her but she didn't thrive there. She has some sensory issue and had a tough time in a school setting. She did not interact well with the other kids and was sad everyday.  She struggled with certain tasks and assignments. She was just miserable and grouchy and having a tough time. I started looking into homeschooling her and we made the decision to give it a try for 1st grade. Homeschooling works for us and she is now in 3rd grade. She still has a tougher time making friends but homeschooling has really pulled her out of her shell. We are able to cater to her needs more and adapt things to make it work better for her. We engage her by incorporating her interests  into our daily lessons.

This is homeschooling. Trip to the beach learning about tides and creatures of the sea.

      We usually start our school day with the time, date, and month. Then we go to numbers and math. Next is snack and break. Followed by spelling and writing. Her writing is phenomenal! After that is language and 20 mins of quiet reading.  We then have lunch and outdoor time. We finish our day with science, history, and geography. Most of the time we do school in our pj's lol. Perks!! My name should really be cupcakes and pajama pants!!! 

     This particular day Little Miss Sass showed interest in spiders. We have a Nat Geo spider book we read, used plastic spiders for multiplication, ( 1 spider has 4 legs, how many legs do 4 spiders have?) and I came up with a few fun activities like crawling like a spider and playdoh spiders. She asked "Why don't they stick to their web?" and "How do they eat?" well that meant experiment time! I came up with 2 experiments to answer her questions. If you want to try these with your own littles you will need.....

A paper plate
Tape
A small cup of oil ( about a TBS)
Sugar cube
A dropper
A small cup of water 

For the first experiment "why don't they stick to their web?"

     I put some tape sticky side up on the plate.To keep it in place I rolled a small piece of tape to make it double sided and put it underneath the bigger, sticky side up piece. I did this 2 times so we had 2 sticky side up pieces. 
      I had her walk her fingers over the tape. She noticed she was sticking. I told her that is how they trap their food. The bugs crawl or fly into the web and get stuck.
     Next I gave her the small amount of oil. I had her dip her finger tips in the oil and then walk her fingers along the tape. What happened? Her fingers did not stick. I explained that spiders do not stick to their web because they have an oil on their bodies that prevents them from sticking, just like her fingers dipped in oil.

She was so happy to know why they don't stick

For the experiment "How do they eat?"

     I gave her a dropper, a small cup of water, and a sugar cube. 
     I told her the sugar cube is the bug that got stuck. The dropper with water in it is the spider injecting his venom into the bug.
     Next I had her drop water on the sugar cube and watch what happened. The water dissolved the sugar cube the same way the spider venom liquefies its preys insides so it can drink it up.

We went for a nature walk looking for webs to observe. We also found some leaves for a spider craft.

Observing a web

 We ended our spider fun with a craft. She used glitter and glue to make a web and leaves to make spiders and bugs.

Little miss Sass! The face says it all

proud of her finished product

   
  This is what homeschooling looks like for us. I hope you enjoyed! Til next time!

Kool Aid Dip Dye Hair Tutorial

        

       Hi there, so for this post I will give you a Kool-Aid hair dye tutorial we tried. My darling little lady wanted hair like the girls from her new favorite movie Disney's Descendants. I mean how cool are they! Heck I want hair as awesome as they have too! I did not want to put harsh chemicals in her hair so opted for a less invasive approach. Its really cheap too! I found lots of tutorials online. I tweaked one to get a brighter color and it worked out fantastic! I was hesitant to use the blue we picked because it looked so light, but the color took great on her light brown hair. Results were a beautiful teal shade! Darker hair I would imagine would have less vibrant results. With so many colors of Kool-Aid the possibilities are endless! I think that if you have dark hair you could apply store bought bleach for hair to your ends. Then the Kool-Aid and achieve great results too! * Disclaimer... I did not try this myself but if you are more ambitious and braver than I am go for it and let me know!

You will need:  

* 3 packets of Kool-Aid in any color you choose. I read blue, red, and purple take the best.

* Disposable gloves! Take it from me these are needed if you don't want smurf fingers!

* A pot with 1 cup water

* A towel or old shirt you do not care about

* Newspapers to protect your work space


Lets get started....

* First get 1 cup water boiling in the pot and dissolve the Kool-Aid.
* Remove  pot from heat and put hair in pony tail.
* Cover back with old towel or shirt.
* PUT ON GLOVES! 
* While water is still hot pour into a heat safe container .
* Dip the ends of hair into the container and let sit for 15 minutes or longer. We did 15.
* Take hair out and squeeze out excess water.
* Towel dry hair and let it dry completely.

Patiently waiting

Remember the gloves I said you would need!

The results! A beautiful vibrant teal

Happy Girl with her Descendants hair

     We washed her hair later that day before bed. We wanted the color to really absorb first. This should last 5-15 shampoos or maybe longer. We are at like 10 washes now and the color has faded some but still looks really good.

After 10 shampoos.

     I hope you enjoyed this tutorial. If you try it let me know how it worked for you. Bye for now xoxox!

                                                              How I became a "caker"
                                                                   My Cake Journey

          So I mentioned in my bio that I am cake baker and decorator. What does that mean? It means I spend countless hours creating cake masterpieces for any special occasion. I absolutely love baking and creating awesome cakes. I started baking at a young age and have come up with all my cake recipes on my own. I make everything homemade and from scratch. I have tweaked them into perfection in my opinion. But I may be partial lol.

 How It all started?
     As I stated previously, I always loved to bake and create new concoctions, but becoming a cake decorator was out of pure stubbornness and determination. It all started back in 2011 for my daughter's 2nd birthday. She wanted a girly John Deere cake. I asked around local bakeries but all they had were cookie cutter green and yellow cakes. Nothing out of the box or original. I decided that I could do this! I would create her perfect cake! I made it my mission to do so. I spent time learning to work with fondant and made test cakes. I started to experiment with making my own fondant. The store stuff didn't taste good to me and was pricey.  After lots of trail and errors I made it happen! I made her perfect cake.

The cake that started it all!

   
Then what?
     Brooke's cake was a start to a new trend. I realized that I loved creating cakes. I liked the challenge. I wanted to bigger and better my craft. I am completely self taught. I actually Major in marine biology! Talk about opposite sides of the spectrum lol. I love both, but cakes allow me to home school Brooke and show my creativity. Whats not to love about that? So as I was saying, I kept trying new techniques out and learning how to do more and more with decorating.  I did most of this by looking at pictures online and trying my version of it. I started to make cakes for family.

cake for my brother

cake for my brother in law

My first big sculpted cake. Made for My hubby.

     Each cake I learned new things and bettered myself. I started to do cakes for friends in addition to family. I taught myself how to sculpt things. For Brooke's 3rd birthday she wanted a bug cake. I made hand painted gum paste butterflies.

Brooke's 3rd birthday cake.

     I got better with sculpting things and making things out of fondant, chocolate, and even melted candy. I started making cakes all occasions for friends and family. Here are just some of them.

Brooke's cakes through the years.

Brooke turn 4

sculpted car replica

Brooke  turns 5

Brooke is 6. Dino theme

Brookes 7th

      Earlier this year, my husband and I competed in a local cake wars. We went up against groups of 3-5.  We had 2 hrs to create a cake. We won the wars and had so much fun. Everyone who was in the wars was so talented. The theme was decades and we chose the 60's. Never in a million years did I think that almost 6 years ago making that first cake would have turned into all this!

Me with our winning cake.

 My most recent cakes from last 2 weekends.

      This goes to show you that you really can do anything you put your mind to! With enough time and motivation you can do it! I hope you all enjoyed reading about my how I become a caker journey! Til next time, xoxo