Magic Just Around the Bend

Have almost made it a week back to work after being down two weeks from my illness cyclic vomiting syndrome. It feels so good to be back to work and among the land of the living. Not only has everyone been so nice and understanding, but after laying in bed thinking I was dying for so long, it feels good to just have a routine again. Now that it’s the start of school, it’s great to get a fresh start in a way.

This weekend we have so much going on in our little town of Excelsior Springs. On Friday and Saturday, there will be the annual Barbecue Fly-In on the River. Then on Sunday and Monday, we will be celebrating being in the Path of Totality for the Solar Eclipse by having a festival in our downtown! There are projected to be thousands that will descend upon us to see over 2 minutes worth of the great shadow that will be cast upon us here in the valley of vitality!

Now that the teachers have returned, things are starting to pick up with the foundation. The next event coming up is Homecoming and I’m really wanting to do something different to connect with our alums. We have lost some real legends here in Excelsior this year and I think it would be nice to have some kind of a memorial service. I thought about letting live butterflies free, but it seems to inhumane, plus, I don’t think it’s the right time of year. We could maybe let balloons go, but don’t want to do anything to hurt the environment. Anyway, it’s a work in progress.

It’s hard to believe that next week is the end of the month. I’ve got to get together a proposal to go to a county-wide mental health board to seek funding for a qualified mental health professional to be hired for our school district. Mental health is becoming more and more of a prevalent issue in our society, however, funding for mental health services has dropped off. There aren’t enough resources to meet the needs of the people and when it comes to our children, that is unacceptable. Earlier in the month a children’s mental health tax was passed and the commission is currently being formed. This is a blessing to our county to have this resource. Our children are worth investing in.

Another project that I’ve been working on locally is a state funded program called Project Homeless Connect. A one-day event, Project Homeless Connect will offer direct resources for those who are homeless or at risk of being homeless in our area. The goal is to get housing for all of those who come for help. With housing being limited in our area, that might mean that they get on a list for housing, but a plan will be put in place for all that come without shelter. There will also be services such as obtaining an id, getting a haircut, taking a shower, getting signed up for qualified programs to help with assistance, having a hot meal thanks to our local hospital, putting together a resume, picking out professional clothes to interview in, and getting a family picture. A local church will be providing childcare throughout the day. This event will provide us with the information that we need in order to establish a program to help the homeless and needy here in our area long-term.

Morning Motivation

You are a work of art. Not everyone will understand you, but the ones who do, will never forget about you.

I Have an Invisible Illness called Cyclic Vomiting Syndrome (CVS)

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I happen to have a rare, chronic disease, called Cyclic Vomiting Syndrome (CVS). The name itself is terrible enough, but the effects that come along with the syndrome are even worse. It’s something that I’ve had all my life, but not to the extreme of which it has shown itself the past 8 years.

Those who have CVS, a majority that are children, will feel nauseas, get sick, and then are unable to stop. Our bodies then run a cycle of getting sick continually until the episode has run it’s course, and then we are well again. We will sometimes get sick multiple times an hour, lasting days, and often weeks, until then slowly we start feeling better again. The next part of the cycle is to then go through a recovery period, after having lost weight and nutrients to our body that are important for us to live. Then we go through a period where we are fine, and then the symptoms start coming on (hiccups, nausea, dizziness, headaches, sensitivity to light, irregular bowels and sleeping) and the cycle will start over again.

If you’re familiar with migraines at all, then you’ll know something about CVS. We have the same symptoms and the doctors are unable to detect, like in head migraines, why stomach migraines occur exactly. To get through, we do a lot of the same types of things for relief: make the room dark, low sound, take hot baths, sleep. It’s very difficult to keep anything down, even water, so much of the time is spent trying to rest between the sickness. Almost every time I have an episode, I have to be admitted to the hospital to be rehydrated. The longer that I can wait until the end of my spell, the greater the chance of it knocking the episode altogether. Sometimes I’m left with no choice, though.

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I struggled not knowing what was wrong for three years before going to the Mayo Clinic in 2014 (pictured at 90 pounds above with friends I made while at Mayo and my husband Jason). The story of that struggle leading up to the diagnosis is one in and of itself, but this is a recovery story. After being diagnosed, I was assigned a specialist from KU and was administered medicine. For the first time I felt like I had been given something that had made a difference. I celebrated a year episode free last year on July 26th and was prepared to do the same this year for two years when I got sick again, on July 23rd. I thought I would never get sick again. Truth is, the doctors told me that I would. I just didn’t want to believe it.

CVS is very difficult to detect, for all tests that are done on the body show that everything is normal. There is a possible hormonal imbalance, that can be genetic (my father and cousin also has this disease), which makes finding a cure difficult. This is a disease that dates back to the 1800’s, and in some studies has been shown to affect one in every two thousand individuals. It’s been stated that there are probably more people who are affected by this disease, but it is often misdiagnosed.

I hope to work to find not only a cure but support for those who are living with this nightmare of a disease. Especially considering children are the ones affected the most.

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