Mark Madsen Bill

Today I went to the State Capitol and learned how to lobby. With this bill coming up its important to try and talk to as many people as possible. It was an exhausting day but really cool. I'm so happy that we have Sen. Madsen fighting for us and giving us hope. It was really difficult to hear another person who is voting say that he is completely aware of what EDS does to your body and how cannabiss can help EDS patients and so many other people. He said he will still choose to vote against the bill like he did last time because he doesn't want people taking advantage to get a high. He had his mind made up and made it clear that nothing would change that. It's heart breaking to have someone say that to you. This is the only hope some people have. Opiates don't always work on people. If there's the slightest chance at getting any relief from pain why wouldn't someone want that? We aren't taking advantage. We don't want to get high. We want a life. We want relief from pain. We want a quality life. We are patients. Not criminals. We need help. 

Medical Marijuana

As many of you know, I am a firm believer that marijuana should be legalized for medical purposes. Living in Utah has been extremely frustrating lately. I feel like people here are more closed minded compared to other states. We aren't asking to make it legal for everyone to just get high all day, we are asking for help. We are asking for hope. Hope for relief. Relief from this horribly painful and crippling medical condition. I'm not asking for everyone to change their views or how they were raised, I'm asking to being a little more open minded about something that can help someone and their quality of life. It makes my heart hurt that someone actually booked Enedina Stanger because she used marijuana to help her live. I know so many people that sit around at home and smoke marijuana in front of their kids just for fun. And here we are making someone who already has a difficult life even more difficult. She is an amazing person dealing with a horrible illness, this is the last thing she needs. Help me and others get Mark Madsens bill passed this month so that Enedina can come back to Utah and get the help she needs and everyone that is struggling and could benefit from this can get some relief.

Classical EDS

There are many types of EDS. I was diagnosed with Classical EDS. Classical EDS is characterized by highly elastic, soft, and doughy skin; unusual scarring; and loose joints. People who have Classical EDS have smooth, stretchy and fragile skin. They are easily bruised and their wounds often split open and heal slowly. We have abnormal range of motion and are more likely to sublux, dislocate and sprain. It can also cause cardiovascular and neurological issues. Problems also caused by EDS include; bleeding, double jointed, heart murmurs, muscle weakness, muscle pain and physical deformity. I am in the process of being diagnosed with Postural orthostatic tachycardia syndrome (POTS). It is a form a dysautonomia. This causes an irregular heart rate, fatigue, dizziness, headaches, heart palpitations, nausea, exercise intolerance, diminished concentration, shaking, fainting, coldness and pain in the extremities, chest pain and shortness of breath. POTS is definitely not uncommon in EDS patients. The shortness of breath, neurological symptoms, chest pain, fainting and heart palpitations have caused me many visits to the ER in the past year. Living with EDS and the pain and complications that come with it will be my biggest obstacle in life. I have to find a way to fight through the pain, deformities and depression. I wont let EDS win.

Living life like a zebra

For those of you who aren't as familiar with EDS, the zebra is our adopted mascot. When people go to med school they tell their students that when they hear hoofbeats that they need to think of horses not zebras so that they don't misdiagnose people with rare diseases. Zebras seem to get forgotten in the medical field. We are rare. But we still exist. 

How it started

Two years ago I was diagnosed with Ehlers Danlos Syndrome. Growing up I always had weird medical problems that no doctor could ever figure out. I was just called "the medical mystery" or doctors would say "she's just weird, we don't know how to fix her". I was always really frustrated growing up, I knew there was something wrong but no one ever believed me. I was told by doctors that my symptoms didn't make sense and that I was making it up to get attention. When I was in 10th grade I had to get shoulder surgery because my shoulder was dislocated and wouldn't go back in. In 2012 the same shoulder dislocated through the back. I then had 6 anchors drilled into my bones. I had hip problems for years so I finally went to a doctor. He told me he didn't see anything wrong with it and sent me to a physical therapist for snapping hip syndrome. The physical therapist told me he didn't agree with that diagnosis because I wasn't able to do any of the exercises. He said that I reminded him of someone he knew with a rare medical condition called Ehlers Danlos. I had never heard of it. I went home and researched it and it was like all of the puzzle pieces finally came together. I then got a confirmed diagnosis in 2014. At first I was almost relieved. I didn't feel crazy anymore. I always knew something was wrong with me but now the doctors finally knew what it was and knew I wasn't making anything up..not that I didn't enjoy being called a hypochondriac. Then once the relief wore off I fell into a depression. This syndrome is horrible and painful. My joints  slide in and out, my muscles feel like knives are being shoved in them, I have no energy. I can sleep all day and still have no energy. I feel like it started to take over my life. I became someone completely different. I feel like I lost myself through all the pain. The simplest things are so hard:getting out of bed, showering, making it through a day at work. It's hard to imagine living a life filled with pain that no one can stop. My fingers started to become disfigured, I have had two shoulder surgeries and a hip surgery. I fee like I am falling apart everyday. This is not just a syndrome that causes you to be flexible. It is painful, crippling and extremely hard to cope with. Every day I struggle to do normal things. Every day is hard. Every day is a struggle. Every day is a fight against my body.