Why This Outreach Was Created
I was recently diagnosed with Lupus and have created this Outreach Program titled the "Purple Butterfly Promise" because the Purple Butterfly represents those suffering from Lupus and I made it a PROMISE not a PROJECT because to me a project sounds short-term , as if there is a deadline or timeline and I basically intend to advocate for Lupus awareness and education for the rest of my life so I made that a promise! So please join me and encourage others to join as well! I have bracelets and pins and pens and magnets and am handing them out to whoever will wear or show them proudly so if you would like one I would be more than happy to send one to you and whoever else may want one (your friends/family) Thanks so much! I hope to hear from you soon!
My Hopes, Dreams & Goals
I plan on studying (and have been practicing yoga for quite a while) to become a certified yoga instructor but since my case is quite unique I have had to find alternate positions that give an equally well balanced whole body stretch/exercise/workout/experience so I would love to put out a DVD for people who suffer from chronic pain/lupus/Addison’s/fibromyalgia/etc. and the whole concept of well-balanced yoga is to find your center and your spirit and relax and de-stress and THAT right there is one of the most important key concepts for people with a chronic (painful) illness- is stress FLARES the illness therefore you are not only getting exercise, but it is exercise designed for individuals who are unable to participate in a "regular" neighborhood yoga classes and it’s great for the muscles and joints and the calming effect is excellent as well!
I plan to contact legislators, radio stations, news stations and newspaper to get the word out, especially if they are able to post articles during May (Lupus Awareness Month- although people with Lupus are not only sick in May so an article anytime of the year is acceptable and an accomplishment to me!)
I also want to apply for grants and use the grant money to create MORE money to donate to research and the fundraising activity in and of itself would be an awareness project-
I need to fill out the Not-For-Profit paperwork to make this Outreach Program “official” but we have already received offers of donations and once we can open and start a bank account we can use that money to purchase more free
items to hand out-
I would love to create a support group that anyone in the country can access-such as a Skype conference call or something
I would like each state to name one day in May (May is supposed to be Lupus awareness month but no one knows that...) I would like each state to name ONE day in May to be Officially Lupus Awareness day where everyone is encouraged to wear purple!
I would also like to publish a children’s book and potentially publish a books for people suffering from Lupus And their spouses/caregivers/friends/family (kind of like a book that gives tips and trick like from a caregivers perspective what they have found helps during flare ups or tips and tricks from a lupus patient to a lupus patient such as use Biotene - sold over the counter- for the mouth sores we get)
I would of course like to create an electronic newsletter when I get a bigger following and a mailing
list
I would love to be invited to and attend seminars and conferences (and -fingers crossed- eventually be invited to speak at one or two or more!)
I would love to create an interactive DVD or CD for the computer or for the TV where you would be able to basically watch what happens when someone goes through the diagnosis process and treatment process and whatnot (Maybe
something to be used in the school system for health class?)
I would like to inform more individuals (not just lupus) but ones with a chronic illness about eating organic, reiki, self-soothing muscle relaxation techniques, biofeedback and things like that so that not EVERYONE who has an
illness is over medicated and on disability!
I would like to use my skills as a therapist and an educator to the best of my ability!
I would like to get more legislators involved and be a face that people recognize as someone who was diagnosed young and didn’t let it stop her from dreaming big goals AND achieving them!
I would love to eventually be able to assist other individuals in setting up their own not-for-profits as well as assisting individuals on disability in finding clothes, food, furniture, etc. and also assisting individuals with Lupus in filling out the disability forms the right way so they are not continuously denied!
I know this sounds ridiculous but I also want to set up a clothes line for pets like shirts or dresses to put on your pets so they can support lupus too! Animals can get Lupus! and since I am basically unable to bear children my pets are my babies and I dress them up all the time!
I also need to get business cards...all of which costs money that I currently do not have!
If I could design jewelry or clothes (simple clothes- T-shirts, sweatshirts, etc.) with my Purple Butterfly Promise logo on them that would be a goal as well!
And I would like to create a coloring book of butterflies all different shapes and sizes and the profits would go to Lupus research or the Lupus foundation.
I plan to contact legislators, radio stations, news stations and newspaper to get the word out, especially if they are able to post articles during May (Lupus Awareness Month- although people with Lupus are not only sick in May so an article anytime of the year is acceptable and an accomplishment to me!)
I also want to apply for grants and use the grant money to create MORE money to donate to research and the fundraising activity in and of itself would be an awareness project-
I need to fill out the Not-For-Profit paperwork to make this Outreach Program “official” but we have already received offers of donations and once we can open and start a bank account we can use that money to purchase more free
items to hand out-
I would love to create a support group that anyone in the country can access-such as a Skype conference call or something
I would like each state to name one day in May (May is supposed to be Lupus awareness month but no one knows that...) I would like each state to name ONE day in May to be Officially Lupus Awareness day where everyone is encouraged to wear purple!
I would also like to publish a children’s book and potentially publish a books for people suffering from Lupus And their spouses/caregivers/friends/family (kind of like a book that gives tips and trick like from a caregivers perspective what they have found helps during flare ups or tips and tricks from a lupus patient to a lupus patient such as use Biotene - sold over the counter- for the mouth sores we get)
I would of course like to create an electronic newsletter when I get a bigger following and a mailing
list
I would love to be invited to and attend seminars and conferences (and -fingers crossed- eventually be invited to speak at one or two or more!)
I would love to create an interactive DVD or CD for the computer or for the TV where you would be able to basically watch what happens when someone goes through the diagnosis process and treatment process and whatnot (Maybe
something to be used in the school system for health class?)
I would like to inform more individuals (not just lupus) but ones with a chronic illness about eating organic, reiki, self-soothing muscle relaxation techniques, biofeedback and things like that so that not EVERYONE who has an
illness is over medicated and on disability!
I would like to use my skills as a therapist and an educator to the best of my ability!
I would like to get more legislators involved and be a face that people recognize as someone who was diagnosed young and didn’t let it stop her from dreaming big goals AND achieving them!
I would love to eventually be able to assist other individuals in setting up their own not-for-profits as well as assisting individuals on disability in finding clothes, food, furniture, etc. and also assisting individuals with Lupus in filling out the disability forms the right way so they are not continuously denied!
I know this sounds ridiculous but I also want to set up a clothes line for pets like shirts or dresses to put on your pets so they can support lupus too! Animals can get Lupus! and since I am basically unable to bear children my pets are my babies and I dress them up all the time!
I also need to get business cards...all of which costs money that I currently do not have!
If I could design jewelry or clothes (simple clothes- T-shirts, sweatshirts, etc.) with my Purple Butterfly Promise logo on them that would be a goal as well!
And I would like to create a coloring book of butterflies all different shapes and sizes and the profits would go to Lupus research or the Lupus foundation.
My Love
I want to thank my husband, Sam Mann, who has been through this with me from the very beginning. You agree “For better or for worse, for richer or for poor and in sickness and in health” but at 21 years old you never expect to have to really follow through with that promise you made to God, your friends, your family and your one true love. I have been told by my husband that it hurts him so badly to watch me in pain. He feels helpless and therefore hopeless. He is a very strong, brave and stoic man but tears swelled up in his eyes and his hands were shaking so badly the first day he had to give me my Chemotherapy injection. I am simply stating this because at times, it
seems that we feel empathy maybe even sympathy for the individual who is ill but what about their friends? Their family? Their spouses? They agreed to this but does anyone ever really imagine it “happening to them”? Especially at the ripe old age of 21?
My husband has not only been my husband and my lover but he has been my caregiver, my soul
mate, my best friend all while being a devoted Staff Sergeant in the USAF to protect our country and to keep us free to choose what we believe in and what we do with our lives. He, just like me, has had to educate himself about the disease and all of the prescriptions, symptoms, side effects, and most up to date research. He has been to the majority of my medical appointments, starting more than three years ago and has given me my chemotherapy injections as well as refilled/called in/picked up prescriptions and he has been there when I was too lightheaded to stand in the
shower and also when I’ve had to sit in a bath chair, too weak to bathe myself. He has been there when I have been too swollen and too frail to clothe myself and could not even tie my own shoes. He has stayed up at night when I am in too much pain to sleep, even when taken high doses of my prescribed medication, and has massaged my sore joints or kneaded the cramping in my muscles. And he was there when I cried, to tell me that I was still “as beautiful as ever”, when my hair started falling out in large clumps. He has been in the waiting room during every surgery without fail, anxiously waiting, shaking one leg, saying prayers and biting his fingernails. He is not embarrassed that his wife walks with a cane at 24 years old when my body becomes so fragile that it cannot hold
itself up. He has taken most of his leave to assist me when I am ill or in need of another operation. My outreach project is not simply to reach out to only those with a diagnosis of Lupus. It is to reach out to the caregivers, spouses,
friends and family who are on the frontlines watching their loved ones suffer and feeling hopeless and helpless as there is not much that they are able to do but be supportive, educate themselves and advocate for their loved ones and the other individuals, like their loved ones, who suffer from the same chronic illness. I add him in here as maybe it is not me you would like to speak with, potentially it is him, as he may be able to provide insight for other spouses and parents who also have the dual role and act as caregivers for loved ones who have fallen ill with a chronic illness such as an auto-immune disease. He may be able to offer advice or comfort them in the fact that they are not alone. It is not just frustrating and stressful for the individual with the disease it is stressful and frustrating for everyone who loves that person and even for the community as a whole such as where they work, where they go to church, where they go to school, etc.
Lupus may have appeared to steal our youth, and at times it does feel that way, but pain is inevitable it’s the suffering that is optional. I choose to still dream big and my husband does as well. He challenges me to not throw myself a Pity Party and say “woe is me, I will simply sit here and dwell in my sorrows” but instead we chose to gather what’s left of our energy and strength and pride and reach out to others who may not feel strong enough or supported enough or brave enough to advocate for their own health and well-being. God has a plan for everyone and although his plan may not have been the same as MY plan for MY future, His plan will trump mine EVERYTIME. And He does not put more than you can handle on your shoulders, and if he does, it is simply so that you will turn to him in your time of need. I believe that my tattoo on my right foot sums it all up very clearly. I chose my foot because we are all God’s servants, and I do not want to seem preachy as I am not telling anyone who/what/when/why or where to believe in I am simply stating that Psalm 56:3 “What time I am afraid, I will trust in thee” serves its purpose for every situation. Next to it I have written and tattooed “FEARLESS”in my own and writing to remind myself that the terrain may get rough but I just need to hold on tight and ride it out and trust that I will be taken care of and come out of it all in one piece in the end.
To put life into perspective, just imagine if you cherished every single breathe you take. Every day, day after day, throughout your life. That is how much we take our lives for granted. There should be no sense of entitlement when it comes to life and living and being alive. The air you breathe and the ability to breathe it is a gift not a privilege and it can be taken away from you at any moment without any notice. Please let the light that shines through me, shine through you and do what you feel in your heart, what has been put on your heart, whatever that may be, you need to do now, not later.
seems that we feel empathy maybe even sympathy for the individual who is ill but what about their friends? Their family? Their spouses? They agreed to this but does anyone ever really imagine it “happening to them”? Especially at the ripe old age of 21?
My husband has not only been my husband and my lover but he has been my caregiver, my soul
mate, my best friend all while being a devoted Staff Sergeant in the USAF to protect our country and to keep us free to choose what we believe in and what we do with our lives. He, just like me, has had to educate himself about the disease and all of the prescriptions, symptoms, side effects, and most up to date research. He has been to the majority of my medical appointments, starting more than three years ago and has given me my chemotherapy injections as well as refilled/called in/picked up prescriptions and he has been there when I was too lightheaded to stand in the
shower and also when I’ve had to sit in a bath chair, too weak to bathe myself. He has been there when I have been too swollen and too frail to clothe myself and could not even tie my own shoes. He has stayed up at night when I am in too much pain to sleep, even when taken high doses of my prescribed medication, and has massaged my sore joints or kneaded the cramping in my muscles. And he was there when I cried, to tell me that I was still “as beautiful as ever”, when my hair started falling out in large clumps. He has been in the waiting room during every surgery without fail, anxiously waiting, shaking one leg, saying prayers and biting his fingernails. He is not embarrassed that his wife walks with a cane at 24 years old when my body becomes so fragile that it cannot hold
itself up. He has taken most of his leave to assist me when I am ill or in need of another operation. My outreach project is not simply to reach out to only those with a diagnosis of Lupus. It is to reach out to the caregivers, spouses,
friends and family who are on the frontlines watching their loved ones suffer and feeling hopeless and helpless as there is not much that they are able to do but be supportive, educate themselves and advocate for their loved ones and the other individuals, like their loved ones, who suffer from the same chronic illness. I add him in here as maybe it is not me you would like to speak with, potentially it is him, as he may be able to provide insight for other spouses and parents who also have the dual role and act as caregivers for loved ones who have fallen ill with a chronic illness such as an auto-immune disease. He may be able to offer advice or comfort them in the fact that they are not alone. It is not just frustrating and stressful for the individual with the disease it is stressful and frustrating for everyone who loves that person and even for the community as a whole such as where they work, where they go to church, where they go to school, etc.
Lupus may have appeared to steal our youth, and at times it does feel that way, but pain is inevitable it’s the suffering that is optional. I choose to still dream big and my husband does as well. He challenges me to not throw myself a Pity Party and say “woe is me, I will simply sit here and dwell in my sorrows” but instead we chose to gather what’s left of our energy and strength and pride and reach out to others who may not feel strong enough or supported enough or brave enough to advocate for their own health and well-being. God has a plan for everyone and although his plan may not have been the same as MY plan for MY future, His plan will trump mine EVERYTIME. And He does not put more than you can handle on your shoulders, and if he does, it is simply so that you will turn to him in your time of need. I believe that my tattoo on my right foot sums it all up very clearly. I chose my foot because we are all God’s servants, and I do not want to seem preachy as I am not telling anyone who/what/when/why or where to believe in I am simply stating that Psalm 56:3 “What time I am afraid, I will trust in thee” serves its purpose for every situation. Next to it I have written and tattooed “FEARLESS”in my own and writing to remind myself that the terrain may get rough but I just need to hold on tight and ride it out and trust that I will be taken care of and come out of it all in one piece in the end.
To put life into perspective, just imagine if you cherished every single breathe you take. Every day, day after day, throughout your life. That is how much we take our lives for granted. There should be no sense of entitlement when it comes to life and living and being alive. The air you breathe and the ability to breathe it is a gift not a privilege and it can be taken away from you at any moment without any notice. Please let the light that shines through me, shine through you and do what you feel in your heart, what has been put on your heart, whatever that may be, you need to do now, not later.