Help Get Melody Treatment
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To: Any kind soul out there
If you ask me about who I am I will tell you my name is Melody Olander, and I am a nineteen year old college sophomore at Arizona State University. I am currently enrolled at ASU on a full ride scholarship for my academic achievements and I am on a premed route. I work three different positions on a golf course, and I also work in a research lab at ASU. I perform field work, work in a lab, and work early mornings starting at 4am, and late nights until about 10 or 11 excluding school work. But only some people are aware of my real story…
About two years ago when I was on my last two weeks of attending high school and should have been excited about graduating and planning my new life, I was suddenly struck with a sharp pain in my head and lost all vision on my left side. I was taken in the hospital when my blood pressure dropped suddenly and I was admitted into Phoenix Children’s Hospital. I had many doctors coming in and out of the room trying new medications on me, trying anything to take away the pain, until they finally decided to medically sedate me for a week. After a week of no improvement, I decided to check myself out of the hospital so I could go back to school to take my finals and walk at my graduation ceremony. I went back to school with no one aware of what had happened to me, and I returned back to work two days after leaving the hospital with still no vision in my left eye and excruciating pain. The pain eventually slowly subsided, and my vision came back, and then I started my freshman year of college.
One day while I was in my biology class during the second week of college I felt extremely weak, lightheaded and nauseous. I thought that maybe I could have caught the flu or something of that nature, and I had my friend drive me home while I was vomiting in her passenger seat. My friend took me home, and I decided to go to sleep to try to pass my sickness. About a week of none of my symptoms subsiding, I went to urgent care where they gave me an IV since I was extremely dehydrated and told me I must’ve got food poisoning and that I should feel better in a couple of days. Another week later I started feeling sharp pain in my stomach and I still couldn’t eat and felt extremely weak. I went back to urgent care again where they gave me another IV and told me I should probably go to the hospital to see what could be wrong. I went to the hospital, where they ran blood work and gave me another IV and accused me of being bulimic and told me that there was nothing wrong with me that they could see. I went home that day feeling so upset and wondering if all of this was just in my head, or why else they would tell me something like that. Months went on where I refused to go to the doctor thinking I would get better, and I ended up losing 20 pounds and felt weak all the time. I still managed to go to school taking 21 credits and work 20 hours a week although my family tried to get me to stop. No one besides my family was aware of the medical issues I was needing to deal with, and many people insulted me for not eating while they ate and questioned my weight loss. I started hanging out with my friends a lot less and losing contact with a lot of old friends because I was always too tired to do simple activities. Eventually my mom convinced me to go to the doctor where they told me that my gallbladder wasn’t working and that my stomach wasn’t digesting food anymore. In January of 2015 I got my gallbladder removed during a school holiday and 4 days later I returned back to school with no one besides my best friend and boyfriend knowing I just got surgery a couple of days beforehand. Months continued on of still no improvement and each day I just felt more and more tired and worse. I eventually developed insomnia from the pain and spent most nights getting at most two hours of sleep. I laid awake most nights wondering if this pain would ever end while I laid awake with my bones aching and feeling like all of my veins were lit on fire. I live every day of my life aching in pain, headaches, throwing up, stomach pain, I feel freezing cold constantly while my insides burn.
Eventually I started to lose hope in ever getting better, and although the people around me tried to be supportive, no one could relate to what I was going through. Eating out with people became awkward when I didn’t eat anything to avoid being sick, not being able to do normal activities led to people not inviting me out anymore. The smallest activities are draining to me. But recently my family made the decision to take me to Mayo clinic which put me in steps towards the right direction of being diagnosed when they found out my heart wasn't working correctly and neither was my stomache. When the tests at Mayo were no longer covered by our insurance we moved on to meet with a neurologist and he has finally diagnosed me with a
rare disorder called CIDP.
Only every 1 to 100,000 people get what's called Chronic Inflammatory Demyelinating Polyneuropathy and many doctors can't find it because it has so many weird symptoms that don't seem to go together. CIDP is a condition in which the body attacks its own nervous system, destroying the myelin sheath, or coating, on the nerves, which direct electrical messages to and from the brain. With this sheath gone, the electrical signals are left skewed, unprotected, causing pain, odd sensations, unwanted physical movements, or even paralyses.
The good news is that there is treatment for this!
For the next 6 months to a year I will start a High dose of Intravenous Immune Globulins (IVIG). IVIG contains naturally occurring antibodies obtained from healthy volunteers, and IVIG is given through a vein over the course of several hours every couple of weeks.
The bad part is treatment is $10,000 a month.
This is where I am asking for your guys help. The sooner I can start treatment the less likely it is for more of my nerves to deteriorate and the more quickly I can get on the road to remission. Even $1 will get me on the road to recovery.
Thank you for your time to read my real story.
If you ask me about who I am I will tell you my name is Melody Olander, and I am a nineteen year old college sophomore at Arizona State University. I am currently enrolled at ASU on a full ride scholarship for my academic achievements and I am on a premed route. I work three different positions on a golf course, and I also work in a research lab at ASU. I perform field work, work in a lab, and work early mornings starting at 4am, and late nights until about 10 or 11 excluding school work. But only some people are aware of my real story…
About two years ago when I was on my last two weeks of attending high school and should have been excited about graduating and planning my new life, I was suddenly struck with a sharp pain in my head and lost all vision on my left side. I was taken in the hospital when my blood pressure dropped suddenly and I was admitted into Phoenix Children’s Hospital. I had many doctors coming in and out of the room trying new medications on me, trying anything to take away the pain, until they finally decided to medically sedate me for a week. After a week of no improvement, I decided to check myself out of the hospital so I could go back to school to take my finals and walk at my graduation ceremony. I went back to school with no one aware of what had happened to me, and I returned back to work two days after leaving the hospital with still no vision in my left eye and excruciating pain. The pain eventually slowly subsided, and my vision came back, and then I started my freshman year of college.
One day while I was in my biology class during the second week of college I felt extremely weak, lightheaded and nauseous. I thought that maybe I could have caught the flu or something of that nature, and I had my friend drive me home while I was vomiting in her passenger seat. My friend took me home, and I decided to go to sleep to try to pass my sickness. About a week of none of my symptoms subsiding, I went to urgent care where they gave me an IV since I was extremely dehydrated and told me I must’ve got food poisoning and that I should feel better in a couple of days. Another week later I started feeling sharp pain in my stomach and I still couldn’t eat and felt extremely weak. I went back to urgent care again where they gave me another IV and told me I should probably go to the hospital to see what could be wrong. I went to the hospital, where they ran blood work and gave me another IV and accused me of being bulimic and told me that there was nothing wrong with me that they could see. I went home that day feeling so upset and wondering if all of this was just in my head, or why else they would tell me something like that. Months went on where I refused to go to the doctor thinking I would get better, and I ended up losing 20 pounds and felt weak all the time. I still managed to go to school taking 21 credits and work 20 hours a week although my family tried to get me to stop. No one besides my family was aware of the medical issues I was needing to deal with, and many people insulted me for not eating while they ate and questioned my weight loss. I started hanging out with my friends a lot less and losing contact with a lot of old friends because I was always too tired to do simple activities. Eventually my mom convinced me to go to the doctor where they told me that my gallbladder wasn’t working and that my stomach wasn’t digesting food anymore. In January of 2015 I got my gallbladder removed during a school holiday and 4 days later I returned back to school with no one besides my best friend and boyfriend knowing I just got surgery a couple of days beforehand. Months continued on of still no improvement and each day I just felt more and more tired and worse. I eventually developed insomnia from the pain and spent most nights getting at most two hours of sleep. I laid awake most nights wondering if this pain would ever end while I laid awake with my bones aching and feeling like all of my veins were lit on fire. I live every day of my life aching in pain, headaches, throwing up, stomach pain, I feel freezing cold constantly while my insides burn.
Eventually I started to lose hope in ever getting better, and although the people around me tried to be supportive, no one could relate to what I was going through. Eating out with people became awkward when I didn’t eat anything to avoid being sick, not being able to do normal activities led to people not inviting me out anymore. The smallest activities are draining to me. But recently my family made the decision to take me to Mayo clinic which put me in steps towards the right direction of being diagnosed when they found out my heart wasn't working correctly and neither was my stomache. When the tests at Mayo were no longer covered by our insurance we moved on to meet with a neurologist and he has finally diagnosed me with a
rare disorder called CIDP.
Only every 1 to 100,000 people get what's called Chronic Inflammatory Demyelinating Polyneuropathy and many doctors can't find it because it has so many weird symptoms that don't seem to go together. CIDP is a condition in which the body attacks its own nervous system, destroying the myelin sheath, or coating, on the nerves, which direct electrical messages to and from the brain. With this sheath gone, the electrical signals are left skewed, unprotected, causing pain, odd sensations, unwanted physical movements, or even paralyses.
The good news is that there is treatment for this!
For the next 6 months to a year I will start a High dose of Intravenous Immune Globulins (IVIG). IVIG contains naturally occurring antibodies obtained from healthy volunteers, and IVIG is given through a vein over the course of several hours every couple of weeks.
The bad part is treatment is $10,000 a month.
This is where I am asking for your guys help. The sooner I can start treatment the less likely it is for more of my nerves to deteriorate and the more quickly I can get on the road to remission. Even $1 will get me on the road to recovery.
Thank you for your time to read my real story.
Organizador
Melody Olander
Organizador
Mesa, AZ