Help Me Live
Donation protected
Hello! I'm Shenandoah and I'm 20 years old.
First of all, thank you for even visiting this page. Even if it's just to read what I've written, or to share with others, I really appreciate it.
I guess I should tell you some things about myself before I launch into everything medical related! I really love literature, art, gaming (videogames, tabletop, etc), music, film, science, history, horror, comic books/graphic novels, sci-fi, fantasy, chess, binge-watching shows (who doesn't?), working in my garden when I have the energy, cooking and/or baking, being with friends, going to concerts or on road trips, being outside, and drawing/painting/photography. My dream is to actually get into a medical or science field one day, but I need to be able to get through school, and in order to do that I have to get my health issues under control.
I have several diagnosed health problems; dysautonomia (POTS), Ehlers Danlos Syndrome (EDS), severe food allergies as well as Celiac Disease, cyclothymia, anxiety/PTSD, ADD/ADHD, scoliosis from a bad back injury, and am severely underweight.* I have included links explaining these conditions below, as well as personal/detailed explanations. I have not included my undiagnosed issue (MCAS).
Dysautonomia + POTS:
http://www.dysautonomiainternational.org/
http://www.dysautonomiainternational.org/page.php?ID=30
It's hard to talk about this one, as it is what makes my daily life at least 50x harder and has left me disabled for the most part. It causes poor circulation, black outs, seizures, tachychardia/palpitations (heart beats extremely fast), extreme fatigue, and a slew of other symptoms. I need to be able to afford compounded blood pressure medications, ER visits, a shower chair, a wheelchair, compression hose, and doctor/specialist co-pays.
Ehlers Danlos:
http://ehlers-danlos.com/what-is-eds/
http://ehlers-danlos.com/hypermobility/
This condition causes me debilitating pain on a daily basis due to my joints dislocating frequently, and exacerbates my other symptoms. Usually the pain is so bad that I have to stay in bed. It would be amazing if I could afford compounded pain medication, physical therapy, massage therapy, and braces for my back/knees/hips.
Allergies/food related issues:
https://cornallergygirl.com/
https://celiac.org/celiac-disease/resources/
https://www.foodallergy.org/facts-and-stats
My diagnosed allergies are to: pork, beef, corn, eggs, dairy derived from cows, along with Celiac Disease (so no gluten). The corn allergy is the worst one, as it cuts me off from being able to buy foods from regular grocery stores completely. I correspond with farmers (usually in the CA/WA area), and get things shipped to me. It is extremely expensive and limiting. I am still working on getting more "safe" food sources in my area (because I am often starving, and this is why I'm so underweight), and need the funds to be able to afford lamb/game for the winter so I won't starve. I also need to be able to afford a carbon mask to wear in public so I will no longer react (as much) to perfume/cooking food/smoke/etc. My allergies also make it so that I cannot take prescription medication unless it is compounded (which means they use fillers/capsules that I will not react to), and that is expensive and often not covered by insurance.
Cyclothymia:
http://psychcentral.com/disorders/cyclothymic-disorder-cyclothymia/
Anxiety/PTSD:
http://www.freedomfromfear.org/AboutAnxietyandDepression.en.html
http://www.adaa.org/understanding-anxiety/posttraumatic-stress-disorder-ptsd
My ups and downs (as well as trauma recovery) could be managed with access to regular visits with a counselor/therapist, and I could possibly be able to afford compounded medication.
ADD/ADHD:
https://www.adhdadulthood.com/step-up
This, paired with my other mental disorders, really makes my life harder than it needs to be. Not only am I insanely forgetful, I also have learning disabilities in math, can't retain verbal information well, and have a very hard time focusing on my studies. With the correct compounded medication and the ability to regularly see a counselor that specializes in treating ADD/ADHD in adults, I could see a huge improvement.
Starvation:
https://en.wikipedia.org/wiki/Starvation_response
I couldn't find many useful links for this, as most have to do with dieting/etc. I can give you my personal experience instead. Whenever I get cut off from my food sources, I starve. Most recently I went through a period of a month and a half where I lived on greens from my backyard/edible flowers I picked, and potatoes. This caused me to lose over 10lbs (weight I cannot spare because I was already 112lbs at 5ft 10in), my memory no longer works, I start to lose my ability to speak clearly (stutter, can't find the words, etc), I can't concentrate, I get extremely depressed, my muscles atrophy, I become weak, my heart struggles to support my body, I faint, my blood sugar is way off, and all of my other health issues seem to get worse. It is hell.
What is the situation?
I currently live with my parents while recieving disability payments, and I cannot afford much. Most of my money goes towards getting what little food I can or paying my bills, so I don't end up with any at the end of the month. I cannot currently hold down a job because most of the time I am not well/able enough to even walk down the stairs in my house (let alone stand for more than 10-20 minutes at a time).
Where is your money going?
I desperately need enough to be able to connect myself with a stable food source because I have been subsisting on only a few things that offer very little nutrition or calories and it is severely affecting my health. I fear losing most physical/mental function if I continue on at this rate. I also need to get another freezer to store food for the winter, be able to attend counseling sessions regularly, be able to pay co-pay for my doctor's visits, and get compounded medicine so I can manage my pain and other conditions effectively. If I can do these things, I can finally think about finding a decent mode of transportation and attend classes at college again.
Thank you for taking time to read this, any amount of help you can offer is very much appreciated. If my goal is reached, I may finally have a chance to get the medical support I desperately need.
First of all, thank you for even visiting this page. Even if it's just to read what I've written, or to share with others, I really appreciate it.
I guess I should tell you some things about myself before I launch into everything medical related! I really love literature, art, gaming (videogames, tabletop, etc), music, film, science, history, horror, comic books/graphic novels, sci-fi, fantasy, chess, binge-watching shows (who doesn't?), working in my garden when I have the energy, cooking and/or baking, being with friends, going to concerts or on road trips, being outside, and drawing/painting/photography. My dream is to actually get into a medical or science field one day, but I need to be able to get through school, and in order to do that I have to get my health issues under control.
I have several diagnosed health problems; dysautonomia (POTS), Ehlers Danlos Syndrome (EDS), severe food allergies as well as Celiac Disease, cyclothymia, anxiety/PTSD, ADD/ADHD, scoliosis from a bad back injury, and am severely underweight.* I have included links explaining these conditions below, as well as personal/detailed explanations. I have not included my undiagnosed issue (MCAS).
Dysautonomia + POTS:
http://www.dysautonomiainternational.org/
http://www.dysautonomiainternational.org/page.php?ID=30
It's hard to talk about this one, as it is what makes my daily life at least 50x harder and has left me disabled for the most part. It causes poor circulation, black outs, seizures, tachychardia/palpitations (heart beats extremely fast), extreme fatigue, and a slew of other symptoms. I need to be able to afford compounded blood pressure medications, ER visits, a shower chair, a wheelchair, compression hose, and doctor/specialist co-pays.
Ehlers Danlos:
http://ehlers-danlos.com/what-is-eds/
http://ehlers-danlos.com/hypermobility/
This condition causes me debilitating pain on a daily basis due to my joints dislocating frequently, and exacerbates my other symptoms. Usually the pain is so bad that I have to stay in bed. It would be amazing if I could afford compounded pain medication, physical therapy, massage therapy, and braces for my back/knees/hips.
Allergies/food related issues:
https://cornallergygirl.com/
https://celiac.org/celiac-disease/resources/
https://www.foodallergy.org/facts-and-stats
My diagnosed allergies are to: pork, beef, corn, eggs, dairy derived from cows, along with Celiac Disease (so no gluten). The corn allergy is the worst one, as it cuts me off from being able to buy foods from regular grocery stores completely. I correspond with farmers (usually in the CA/WA area), and get things shipped to me. It is extremely expensive and limiting. I am still working on getting more "safe" food sources in my area (because I am often starving, and this is why I'm so underweight), and need the funds to be able to afford lamb/game for the winter so I won't starve. I also need to be able to afford a carbon mask to wear in public so I will no longer react (as much) to perfume/cooking food/smoke/etc. My allergies also make it so that I cannot take prescription medication unless it is compounded (which means they use fillers/capsules that I will not react to), and that is expensive and often not covered by insurance.
Cyclothymia:
http://psychcentral.com/disorders/cyclothymic-disorder-cyclothymia/
Anxiety/PTSD:
http://www.freedomfromfear.org/AboutAnxietyandDepression.en.html
http://www.adaa.org/understanding-anxiety/posttraumatic-stress-disorder-ptsd
My ups and downs (as well as trauma recovery) could be managed with access to regular visits with a counselor/therapist, and I could possibly be able to afford compounded medication.
ADD/ADHD:
https://www.adhdadulthood.com/step-up
This, paired with my other mental disorders, really makes my life harder than it needs to be. Not only am I insanely forgetful, I also have learning disabilities in math, can't retain verbal information well, and have a very hard time focusing on my studies. With the correct compounded medication and the ability to regularly see a counselor that specializes in treating ADD/ADHD in adults, I could see a huge improvement.
Starvation:
https://en.wikipedia.org/wiki/Starvation_response
I couldn't find many useful links for this, as most have to do with dieting/etc. I can give you my personal experience instead. Whenever I get cut off from my food sources, I starve. Most recently I went through a period of a month and a half where I lived on greens from my backyard/edible flowers I picked, and potatoes. This caused me to lose over 10lbs (weight I cannot spare because I was already 112lbs at 5ft 10in), my memory no longer works, I start to lose my ability to speak clearly (stutter, can't find the words, etc), I can't concentrate, I get extremely depressed, my muscles atrophy, I become weak, my heart struggles to support my body, I faint, my blood sugar is way off, and all of my other health issues seem to get worse. It is hell.
What is the situation?
I currently live with my parents while recieving disability payments, and I cannot afford much. Most of my money goes towards getting what little food I can or paying my bills, so I don't end up with any at the end of the month. I cannot currently hold down a job because most of the time I am not well/able enough to even walk down the stairs in my house (let alone stand for more than 10-20 minutes at a time).
Where is your money going?
I desperately need enough to be able to connect myself with a stable food source because I have been subsisting on only a few things that offer very little nutrition or calories and it is severely affecting my health. I fear losing most physical/mental function if I continue on at this rate. I also need to get another freezer to store food for the winter, be able to attend counseling sessions regularly, be able to pay co-pay for my doctor's visits, and get compounded medicine so I can manage my pain and other conditions effectively. If I can do these things, I can finally think about finding a decent mode of transportation and attend classes at college again.
Thank you for taking time to read this, any amount of help you can offer is very much appreciated. If my goal is reached, I may finally have a chance to get the medical support I desperately need.
Organizer
Shenandoah Jones
Organizer
Manassas, VA
