Today's National Health Activist Writer's Blog Post prompt is writer's choice: Write about whatever you like. I've had this idea floating in my head for a couple of weeks now and have been saving it up for a choice day. And I hope I do this justice, and I definitely hope I treat the topic with respect. So here we go.
We are family. We laugh together. We cry together. We do fun things together. We hold each other's hands when things aren't so good. We support each other when times are really, really bad. And we rejoice with each other when things are really, really good.
I belong to the best family a girl could ever ask to belong too.
But I'm not talking about my immediate, blood relatives. Though they are pretty good too. No, I'm referring to the people in the online Facebook support groups that I'm in. They are my ultimate family. The family that truly "gets" me. The family that is ALWAYS there for me, and I do mean always because there is always at least one person that is having insomnia too so I can talk to people all through the night. Or I can talk to some of the people from the other side of the world I've connected with like Australia, New Zealand, or Europe because they are up while we are sleeping. This family is the best.
Even though this is not my "blood family" they are probably closer in a lot of ways than my blood relatives to me, because they know all the crazy, backwards things my body does that I try not to bother my family with. I can go in an Adult tube feeding group and tell them I just had bile spew all over me from my tube and everyone is just like "Man, I hate it when that happens" or "doesn't that stink" and doesn't say anything negative. I can go in a dysautonomia group and talk about how crappy I feel because my blood pressure is 70/45 and they totally understand and say they hope I feel better and tell me to eat lots of salt and drink plenty of water. I can go in an EDS group and talk about how much pain I'm in because my shoulder and hip keep popping out of place, over and over, and over again and everyone understands me there too. It's like instant understanding, compassion, love, and prayers for better days with just a couple of key strokes. And you know their genuine because they have the same needs to be met and have the same posts day after day after day.
But the family that I have grown the closest with for several reasons is the mitochondrial disease support groups. First of all, they tend to be more welcoming and way less drama than some of the other groups (minus one of them, but it's really big and the more people obviously the more drama). The Indiana mito group is very eager to meet up with each other whenever someone has an appointment we post it in the group to see if anyone else is going to be in the area of our appointment so we can meet up because we know we are family. We love to be there to support each other not only through the internet but in person as well. We also plan socials and get togethers as well so the families can get together and we can be "normal" together because everyone is the same. But the other reason I'm extremely close to the mito support groups is that this disease is not a pretty disease. It doesn't treat you nice. And mainly kids are affected. Young, little kids. There are adults too, obviously, because I am one. But you get on these boards and read day after day of little kids that are in the hospital for days to months on end fighting for their life. From things as small as colds can turn into sepsis and pneumonia for us.
But we all rally together, parents post about their child's problem. And everyone prays or sends good thoughts to this child. Tries to offer suggestions of what we do for our issues similar to that of the child (or adult). We check on the person in the hospital or at home. We are in constant communication. And for people who have a disease where it's hard to remember things we are blessed to be able to remember who is in the hospital, who is having tummy troubles, who is having surgery in 3 days, who is starting a blended diet for their tube feeding and we should check to see how that is going. We remember to lift these people, our family up. We do not tear them down. We hold them up when they are weary and can not stand on their own two feet anymore. When someone in our family is at their weakest, someone from our family will step up and do what needs doing for the person that needs help. We show up to visit each other in the hospital. We show up at appointments. And we show up just to talk in the middle of the night on instant messaging if someone just needs a listening ear to get through a tough spot they are in. We show up. Because family shows up for family. All the time.
Most importantly though. We show up when one of us looses the battle. Unfortunately, if you've been around the mito community for any length of time, you've experienced this. It happens way too often and those it happens to are always way too young, no matter the age. I still remember my first experience in the community was a beautiful 16 year old girl named Corynna. I didn't know much about her. Except she was diagnosed less than a year before she passed away. My most recent experience was a 5 year old boy named Finn who knew he was a special boy, according to a news story that was done about him several years ago. In my short 9 months in the mito community I believe I've been exposed to about 30-40 mito casualties, and none of them are fair, just, or easy. And they all hurt just the same.
But every single time that we gain one more "mito angel" almost everyone in the mito community posts a picture on their page of a green candle burning (green is the color of mito disease awareness) and sometimes the persons name is on the candle. We burn our candles in memory of the newest mito angel out of respect to our family. We would hope if it happened to us the same would be done for us. There is just something so touching about scrolling through your newsfeed and seeing so many lit candles in memory of such an innocent life, taken much too early. We are family. I don't know anyone but family that could stay together and cope to get through times like this. We need each other. We need to lift each other up. And we do. We really do. I love my family, that is there for me, and everyone else through the good and bad times. My family that rejoices with me and grieves with me. My family that isn't my family by blood, but my family by heart, my family by choice, my family by strength, hope, and determination. My family who fights like heck for a cure and supports each other at the same time. Thank you family, for all you do. Let's keep fighting this fight together with hope. After all, family sticks together, right?
I belong to the best family a girl could ever ask to belong too.
But I'm not talking about my immediate, blood relatives. Though they are pretty good too. No, I'm referring to the people in the online Facebook support groups that I'm in. They are my ultimate family. The family that truly "gets" me. The family that is ALWAYS there for me, and I do mean always because there is always at least one person that is having insomnia too so I can talk to people all through the night. Or I can talk to some of the people from the other side of the world I've connected with like Australia, New Zealand, or Europe because they are up while we are sleeping. This family is the best.
Even though this is not my "blood family" they are probably closer in a lot of ways than my blood relatives to me, because they know all the crazy, backwards things my body does that I try not to bother my family with. I can go in an Adult tube feeding group and tell them I just had bile spew all over me from my tube and everyone is just like "Man, I hate it when that happens" or "doesn't that stink" and doesn't say anything negative. I can go in a dysautonomia group and talk about how crappy I feel because my blood pressure is 70/45 and they totally understand and say they hope I feel better and tell me to eat lots of salt and drink plenty of water. I can go in an EDS group and talk about how much pain I'm in because my shoulder and hip keep popping out of place, over and over, and over again and everyone understands me there too. It's like instant understanding, compassion, love, and prayers for better days with just a couple of key strokes. And you know their genuine because they have the same needs to be met and have the same posts day after day after day.
But the family that I have grown the closest with for several reasons is the mitochondrial disease support groups. First of all, they tend to be more welcoming and way less drama than some of the other groups (minus one of them, but it's really big and the more people obviously the more drama). The Indiana mito group is very eager to meet up with each other whenever someone has an appointment we post it in the group to see if anyone else is going to be in the area of our appointment so we can meet up because we know we are family. We love to be there to support each other not only through the internet but in person as well. We also plan socials and get togethers as well so the families can get together and we can be "normal" together because everyone is the same. But the other reason I'm extremely close to the mito support groups is that this disease is not a pretty disease. It doesn't treat you nice. And mainly kids are affected. Young, little kids. There are adults too, obviously, because I am one. But you get on these boards and read day after day of little kids that are in the hospital for days to months on end fighting for their life. From things as small as colds can turn into sepsis and pneumonia for us.
But we all rally together, parents post about their child's problem. And everyone prays or sends good thoughts to this child. Tries to offer suggestions of what we do for our issues similar to that of the child (or adult). We check on the person in the hospital or at home. We are in constant communication. And for people who have a disease where it's hard to remember things we are blessed to be able to remember who is in the hospital, who is having tummy troubles, who is having surgery in 3 days, who is starting a blended diet for their tube feeding and we should check to see how that is going. We remember to lift these people, our family up. We do not tear them down. We hold them up when they are weary and can not stand on their own two feet anymore. When someone in our family is at their weakest, someone from our family will step up and do what needs doing for the person that needs help. We show up to visit each other in the hospital. We show up at appointments. And we show up just to talk in the middle of the night on instant messaging if someone just needs a listening ear to get through a tough spot they are in. We show up. Because family shows up for family. All the time.
Most importantly though. We show up when one of us looses the battle. Unfortunately, if you've been around the mito community for any length of time, you've experienced this. It happens way too often and those it happens to are always way too young, no matter the age. I still remember my first experience in the community was a beautiful 16 year old girl named Corynna. I didn't know much about her. Except she was diagnosed less than a year before she passed away. My most recent experience was a 5 year old boy named Finn who knew he was a special boy, according to a news story that was done about him several years ago. In my short 9 months in the mito community I believe I've been exposed to about 30-40 mito casualties, and none of them are fair, just, or easy. And they all hurt just the same.
But every single time that we gain one more "mito angel" almost everyone in the mito community posts a picture on their page of a green candle burning (green is the color of mito disease awareness) and sometimes the persons name is on the candle. We burn our candles in memory of the newest mito angel out of respect to our family. We would hope if it happened to us the same would be done for us. There is just something so touching about scrolling through your newsfeed and seeing so many lit candles in memory of such an innocent life, taken much too early. We are family. I don't know anyone but family that could stay together and cope to get through times like this. We need each other. We need to lift each other up. And we do. We really do. I love my family, that is there for me, and everyone else through the good and bad times. My family that rejoices with me and grieves with me. My family that isn't my family by blood, but my family by heart, my family by choice, my family by strength, hope, and determination. My family who fights like heck for a cure and supports each other at the same time. Thank you family, for all you do. Let's keep fighting this fight together with hope. After all, family sticks together, right?
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