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Sabrina Stevens

Organized by: Sabrina Crown Stevens

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Please help keep me alive for as long as we can, or at least give me a chance at a better quality of life to whatever extent possible while I am still here. "Well beating around the bush and sugar coating things will not help anyone...especially you" - my mother "Well I feel weird just saying it's slowly killing me. .-." - me "So do I sweetheart... Its the hardest thing in the world for me to say, but sometimes the truth has to be told & faced." - my mother This conversation took place yesterday... I'm in need of transportation to medical treatment to stay alive or at least have a better quality of life while I am still alive. I do not have any transportation at the moment and I have no money since I have been too sick to work the last 13 months. Disability takes time to get and I have nothing to save from or sell. There is no other condition quite like mine. Professor B.U.K Li from the Children's hospital of Wisconsin describes cvs "there is no other disorder that will make you vomit 15-30 times (at a time), up to 400 times per episodes,'' in one person alone,'' coming every 5-10 minutes, there really isn't anything... so in my mind it is the most intense vomiting disorder in human beings." (please click here if you want to learn about my chronic illness cyclic vomiting syndrome in more detail before sharing or donating, I will also be adding videos shortly for those who prefer videos if I can ever get the courage and enough energy to make them ) There are 3 main "approaches" to treatment, you need all 3 when you have an extreme case like I do. -Treatment from home (I do not need a vehicle for this besides an emergency run to the store for more treatment supplies) -Going to a hospital is the most critical part of treatment, it is all that keeps many of us alive in cycles. These extreme cycles can occur at any hour of the day or night. There is no specific appointment or Dr. for you to see. Its common for a specialist to write a "prescription" of rules for e.r doctors to follow on how to treat you. At times you will be admitted, sometimes you'll be there 12 hours getting treatment, but a few hours later you need to go back because the medicine wore off before that episode passed and the doctors were not able to "abort the episode" (which is the case more often than not for many of us). There are times you puke so much you rip your throat, there was one man with cvs who puked until his esophagus tore and he ended up in a coma. (You can't predict when these episodes are going to happen a week before it happens. Usually I need to go 2x a week. Sometimes it can be up to 5.) -Seeing a specialist for CVS-CVS doctors are far and few between so traveling to them is usually your only option but we do still need appointments with various doctors for various parts of cvs and managment. Examples; gi specialist, neurologist, nutritionists, behavioral therapists, dentists, pcp, and more. I have spoken to the Mayo clinic, it would be the best treatment available to me, however it is 200 miles away and I need a vehicle to get there as often as I would need to go. My insurance will provide transportation via cab but they require multiple days notice, I often don't have multiple days notice. They have to be scheduled and the most important part of my treatment cannot be scheduled, the part that keeps me alive. They also have specific hours of operation, often times I need to go to the hospital outside of those hours because I was going to appointments during the day or my episode got worse extremely fast which does happen at night and early morning more often which is outside of their business hours and outside of bus hours. Last but not least they will not provide transportation to an emergency facility because they do not know if you are a liability and would rather you take an ambulance. Ambulances...are insanely expensive and I cannot afford to take them multiple times a week and being left at the hospital with no way home. Just one of my bills from an e.r trip when I was only a few miles away from the hospital is $14,000.00. I have walked to and from the hospital and appointments many times, it never goes well, especially with my health decreasing like it has. Heat is a MAJOR trigger for episodes/cycles. It shuts my body down and honestly beats the purpose of getting the treatment at the er prior to walking home. It isn't safe especially during an actively dangerous cycle to walk around in the heat, light, and loud areas. Dehydrating and passing out are possible at that stage and being in the AZ heat at that point is basically suicide. Its is best to be in cool air, and get to a dark quiet environment as quickly as possible. (You can research CVS and see that is a main point in treatment. They say it is essential.) Every medical necessity of mine (not only the hospital part of treatment that keeps me alive) would only cost about $1,000-$1,500. This will also get me to a specialist for my diseases in Phoenix. I have family who can help me with gas and insurance but no one in my family has the money or resources to help with a vehicle or transportation. My parents are not in AZ anymore, my grandfather is blind, my grandmother won't drive. Cabs to all of this would cost an insane amount of money. Medical help means the difference between life and death. Enough people donating five or ten dollars, could literally be the world of difference between life and death literally any time between now and two years from now depending how quickly my health keeps decreasing. If we cannot save my life this will at least help me have a better quality of life for as long as possible. I've lost over fifty pounds in a year, by this time next year if I lose the same amount I will be 89 lbs, it has officially been a year today since I was in the hospital for puking blood and everything took a turn for the worse. Each episode is a gamble for life, but you can only lose so much weight from malnutrition until you do die.. I am terrified to see what will happen to my body without all of the treatments and medical help I need. Cvs doesn't kill people directly but multiple people I've met this year alone died due to complications from/caused by their cvs/ not getting treatment in time. My health is declining rapidly again, not even a week ago I fainted and hit my face on the sink and then my head on the door knob. Now we have to check for Postural Orthostatic Tachycardia Syndrome and gastropresis as well.. I cannot eat any foods including fruits and vegetables most of the time, and I have a hard time keeping down most liquids. I try to get nutrition from smoothies. CVS is extremely rare but it is serious, it is scary, and it can have serious complications. I don't want to die or not be able to get medical help because I didn't ask for help. I cannot do this alone like I have been attempting to the last year. That is why I would appreciate, more than anything, if we could get enough people to donate $5, or at least share this story in hopes that someone else will donate even just $5. It adds up. I don't need anything fancy or expensive, it just needs to run me in and out of town a few times a week, get me around to the appointments, to the hospital for treatment, to Phoenix for a specialist, and have ac because the heat intolerance but ac is easy to fix I am sure a friend would be able to help with that if needed for free or pretty inexpensive. I am not asking so I can have a car to go mess around in or because I am too lazy to figure something else out. Its extremely difficult to have fun and go hang out with people when you feel like you have a constant stomach flu and it feels like you are being gutted/stabbed to death. It also sucks feeling like a complete downer to your friends or them having to listen to you vomit. CVS commonly causes people to withdraw from social interactions for understandable reasons. When you have a stomach flu or food poisoning, chances are you do not like being social or going out too much. I have the equivalent to those X10 every day.... please trust me when I say going out and having "fun" is not in any fashion my priority or even desire. All I want is to have the security of knowing I have transportation that I can get in at any time to go do what I need to stay alive. I do everything I can to stay afloat and I think I am doing pretty okay at that given my situation but there is no way I can save up for a car right now.. and I need this so badly. You might be wondering what the issue is with asking for a ride. Its a logical questions but here are the issues and why its unrealistic to expect others to be able to do. People have offered to drive me until they find out where I am. They withdraw the offer for reasons like distance, time, gas, or something came up etc. Which is unreliable and understandable. When your life is at stake unreliable doesn't cut it no matter how good the intentions are or how much you appreciate the good intentions. On average per week I am looking at 3-6 appointments a week, sometimes more, and possibly some in Phoenix soon at the Mayo Clinic. Emergency treatments 2x a week as needed sometimes more. Avg 240 - 320 miles per week. This will go up by multiple hundred each week soon if I get the costs of the mayo clinic covered by my insurance considering it is 400 miles per trip. Hours per week towards just medical appointments range from 28-44 hours on average but it can be more and if I get the mayo clinic covered it will go up 5 hours minimum for each appointment there. That is a full time job basically and over half of it is "on call". Everyone I know has at least one full time job already and children...literally none of them can do this. There have been times I needed to get to a hospital for treatment and no one is available. My life depends on all of these things, they are necessary and this is too unreliable. I can't expect people to call out of work, or wake up in the middle of the night, or to drag their kids to appointments all week, or take me to Phoenix and back , cancel plans or important events, to help me because I am sick. Life doesn't work like that... I figured trying to get $5.00 donations from enough people would be a much more realistic and better approach not just to save time, but to garuntee I have transportation I need to stay alive or have a better quality of life while I am here than the alternatives. My surgery in December did not help as much as we hoped it would, although I am grateful for what it has done for me. This is just a little bit of my story and my plead for some heros to please help keep me alive for as long as possible or at least on my needed treatments so I can have as good of a quality of life as I can while I am still here. Thank you all for your support, it means the world to me. -Sabrina


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Sabrina Crown Stevens

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