Eleni,
I do know how you feel and what you go through on a daily basis. I have an autoimmune disease myself. I have Dermatomyositis which, like lupus, is a connective tissue autoimmune disease but is also a piggy back meaning I'm likely to get other autoimmune diseases as I age. I've also been tentatively diagnosed with Sjogren's Syndrome but have never had the testing because it's supposed to be painful, expensive and treated the exact same way so they said not to bother. My disease showed up at the age of 20. I went through 6 doctors in 8 months before anyone knew what I had. Then I fought for three more months with a rheumatologist who told me I couldn't have the disease because I was too young even though all the tests said otherwise. I then went through three of those before finding one who did right by me by putting me on the correct medication and dosages.
I'm currently unmedicated so day to day is more of a struggle than it should be. It can be very difficult to admit that you're not feeling well or that you can't do something. I'm very independent and to admit that I can no longer put the dishes up or have to wait for my fiancee or brother in law to get home so I can make dinner because I can't move the boiling pot of water from the stove to the sink practically kills me. They are both wonderful because they understand what I'm going through and are accepting but a lot of people aren't because I don't necessarily look sick. I look strong and hale while inside I can barely move because of the weakness and pain. I can't be outside for any length of time because it feels like a cactar delivering 100,000 needles to my skin and then I feel like I've had sun poisoning for a day after.
Some days are better than others. I've discovered that I enjoy the smaller things, the things that most people don't even notice anymore. It amazed me how good it was to be able to walk up a flight of stairs after a year of not being able to do it. A kiss from my love and a meal I was able to make by myself mean the world to me. I don't feel like I take for granted things as often as I did and I am more optimistic. I try to see the good in life even when it's very clear a storm is coming. It might be raining now but that rain is cleansing and healing so once it's gone, everything will be better for it. Hell, even one of those crappy cheeseburgers from McDonald's can be heaven. I know I'm going to be sick as a dog from it later but it tastes so good... I enjoy it while I can.
 It's those things, the small every day things, that keep me going. They keep me positive and moving. I refuse to lay down and let this thing control me. When I was first diagnosed, my dog Radar kept me going. He needed me and in reality, I needed him more. Now I have my family and our animals to keep it going. They need me so the days when even my own well being isn't enough, they are.Â
I will admit it's nice having friends, though, who understand. My mother was diagnosed with the same disease three years after I was. We can discuss what's going on and it helps. I extend the offer for you to come to me and talk. If you want to PM me, I'll give you my Skype and we can build a support system. The same goes to anyone else who may be going through the same thing but not want to say something publicly. Please feel free to hit me up. I'm always willing to chat.Â
I hope everyone has a wonderful day and can find the beauty in just one thing to brighten your day and maybe even someone elses.
I do know how you feel and what you go through on a daily basis. I have an autoimmune disease myself. I have Dermatomyositis which, like lupus, is a connective tissue autoimmune disease but is also a piggy back meaning I'm likely to get other autoimmune diseases as I age. I've also been tentatively diagnosed with Sjogren's Syndrome but have never had the testing because it's supposed to be painful, expensive and treated the exact same way so they said not to bother. My disease showed up at the age of 20. I went through 6 doctors in 8 months before anyone knew what I had. Then I fought for three more months with a rheumatologist who told me I couldn't have the disease because I was too young even though all the tests said otherwise. I then went through three of those before finding one who did right by me by putting me on the correct medication and dosages.
I'm currently unmedicated so day to day is more of a struggle than it should be. It can be very difficult to admit that you're not feeling well or that you can't do something. I'm very independent and to admit that I can no longer put the dishes up or have to wait for my fiancee or brother in law to get home so I can make dinner because I can't move the boiling pot of water from the stove to the sink practically kills me. They are both wonderful because they understand what I'm going through and are accepting but a lot of people aren't because I don't necessarily look sick. I look strong and hale while inside I can barely move because of the weakness and pain. I can't be outside for any length of time because it feels like a cactar delivering 100,000 needles to my skin and then I feel like I've had sun poisoning for a day after.
Some days are better than others. I've discovered that I enjoy the smaller things, the things that most people don't even notice anymore. It amazed me how good it was to be able to walk up a flight of stairs after a year of not being able to do it. A kiss from my love and a meal I was able to make by myself mean the world to me. I don't feel like I take for granted things as often as I did and I am more optimistic. I try to see the good in life even when it's very clear a storm is coming. It might be raining now but that rain is cleansing and healing so once it's gone, everything will be better for it. Hell, even one of those crappy cheeseburgers from McDonald's can be heaven. I know I'm going to be sick as a dog from it later but it tastes so good... I enjoy it while I can.
 It's those things, the small every day things, that keep me going. They keep me positive and moving. I refuse to lay down and let this thing control me. When I was first diagnosed, my dog Radar kept me going. He needed me and in reality, I needed him more. Now I have my family and our animals to keep it going. They need me so the days when even my own well being isn't enough, they are. I will admit it's nice having friends, though, who understand. My mother was diagnosed with the same disease three years after I was. We can discuss what's going on and it helps. I extend the offer for you to come to me and talk. If you want to PM me, I'll give you my Skype and we can build a support system. The same goes to anyone else who may be going through the same thing but not want to say something publicly. Please feel free to hit me up. I'm always willing to chat.Â
I hope everyone has a wonderful day and can find the beauty in just one thing to brighten your day and maybe even someone elses.
Ereshkigal AtroposÂ
Adelina Lee
(Balmung Server)
