"So, what, does she turn into a wolf or something?"
Unfortunately, Lupus doesn't mean that you suddenly have werewolf abilities. It'd be a heck of a lot cooler if it was.
Lupus (systemic lupus erythematosus) is an autoimmune disease that causes the immune system to attack normal, healthy tissue in the body. It can affect pretty much any area of the body, from organs to joints. It's chronic and more likely to appear in women. There isn't a cure, just management for symptoms during a flare-up and to decrease the frequency of the flare-ups. Some people don't ever even know that they have it. It's one of those invisible diseases that make people look at you and go, "Oh it can't be that bad!"
Symptoms of Lupus can include:
My mom was diagnosed in her early 20s, when my brother and I were just kids. She had horrible mouth sores throughout all of her teen years, was in chronic pain, and always tired, but just figured it happened when you were a young mom of two. Her ANA results only sometimes come back as positive. There wasn't a lot they had found that was effective in controlling it back then. Hers was attacking her liver and the prognosis wasn't good. She was told she wouldn't see us grow into teenagers and to cherish the time she had. That her liver would fail.
But, I never knew it was that bad. I don't remember a point where I was sat down and told my mom was that sick. I always knew she was sick, that sometimes I had to stay with my grandparents while Mom had appointments that my dad had to take her to, and that sometimes she came back feeling worse. But that wasn't the norm. Most of the time, she was up playing with us, teaching us, taking care of us. If you never knew my mom's extensive list of diagnoses, you would never guess everything she deals with. She's always happy and always had a positive outlook on life. I remember being told we had to get our flu shots every year to help make sure she didn't catch it and that we couldn't do the nose spray stuff because it was a live virus and she couldn't be exposed to that. Other than that, I didn't know until recent years how sick she was.
When I was around 14 (I think), Mom told us that she had to go to New Orleans to a hospital to find out about receiving a liver transplant. They thought that would end up being her only option, because these things don't just go away, right?
Well, fast forward and currently my mom's liver disease caused by her Lupus is in remission and has been for quite some time. It's "unexplained" and there's "no reason for it," but it is. But my point of telling you about this is to highlight just one area that this illness can effect and that the results aren't always the same. All of my mom's blood work can change over the course of a few months and what once came back as positive, could instead be negative. It's never certain.
There's lot of different medications that they use to manage the symptoms and flare-ups. For the longest time, they used steroids as it appeared to be the most effective method. In the last 5 or 6 years, they figured out that this really off-the-wall drug for malaria (yes, the thing you can get from mosquitoes) is really effective in managing Lupus. It was a fluke, but that's the one my mom is on now and it really has decreased the frequency of her flare-ups. Science is wild.
In the last couple of years, I've started to hear more about this thing that used to feel so isolated to my mom. I've met coworkers with family members who have Lupus-each with a different afflicted area and some much more severe than my mom's. Selena Gomez came out with her story of her battle with it and has even gone through Chemotherapy in an effort to treat her. It doesn't feel quite so invisible anymore. The more we learn about it, the better we can manage it.
So here's to Lupus Awareness Month, here's to my mom, and here's to anyone else suffering from an invisible illness. It's okay that you feel bad. You're not crazy just because your pain or symptoms aren't visible on the outside of your body. You're tougher than you look and you got this.
Lupus (systemic lupus erythematosus) is an autoimmune disease that causes the immune system to attack normal, healthy tissue in the body. It can affect pretty much any area of the body, from organs to joints. It's chronic and more likely to appear in women. There isn't a cure, just management for symptoms during a flare-up and to decrease the frequency of the flare-ups. Some people don't ever even know that they have it. It's one of those invisible diseases that make people look at you and go, "Oh it can't be that bad!"
Symptoms of Lupus can include:
- Achy joints
- Prolonged fatigue
- Unexplained fevers
- Swelling/fluid retention in the joints
- Sensitivity to the sun
- Mouth/nose sores
- Butterfly rash
Lupus symptoms mimic a lot of other illnesses/is really just made up of a lot of problems all rolled into one diagnosis. Because it attacks the immune system, those with it are at much higher rates of catching viruses and infections. However, this also means that their bodies have a much, MUCH harder time fighting off anything they could be exposed to. Think abut it like a video game: most of the time you have some sort of defense-your shields-that offers an extra layer of protection before your life starts taking a hit in a battle. The shields can recover if you lay low long enough. Someone with Lupus doesn't have this luxury-their shields are always down and can't just recover.
Diagnosing Lupus is tricky because it does mimic so many other things. There isn't one specific Holy Grail test that can confirm 100% you have it or not. There's lab work that can be done-the most common being an ANA test. The way this was explained to me is that it checks the inflammation caused in your body and the antibodies it produces. I think. I could be remembering that incorrectly, but I know it involves inflammation and antibodies. While this is the most common, it cannot be the sole determinate of a diagnosis as a positive result could be caused by a variety of illnesses-a common theme with our friend Lupus. A negative result also can't tell you for sure that you don't have it. So really, a diagnosis can only come from various lab-work combined with the presenting symptoms.
It's all very complicated.
My mom was diagnosed in her early 20s, when my brother and I were just kids. She had horrible mouth sores throughout all of her teen years, was in chronic pain, and always tired, but just figured it happened when you were a young mom of two. Her ANA results only sometimes come back as positive. There wasn't a lot they had found that was effective in controlling it back then. Hers was attacking her liver and the prognosis wasn't good. She was told she wouldn't see us grow into teenagers and to cherish the time she had. That her liver would fail.
But, I never knew it was that bad. I don't remember a point where I was sat down and told my mom was that sick. I always knew she was sick, that sometimes I had to stay with my grandparents while Mom had appointments that my dad had to take her to, and that sometimes she came back feeling worse. But that wasn't the norm. Most of the time, she was up playing with us, teaching us, taking care of us. If you never knew my mom's extensive list of diagnoses, you would never guess everything she deals with. She's always happy and always had a positive outlook on life. I remember being told we had to get our flu shots every year to help make sure she didn't catch it and that we couldn't do the nose spray stuff because it was a live virus and she couldn't be exposed to that. Other than that, I didn't know until recent years how sick she was.
When I was around 14 (I think), Mom told us that she had to go to New Orleans to a hospital to find out about receiving a liver transplant. They thought that would end up being her only option, because these things don't just go away, right?
Well, fast forward and currently my mom's liver disease caused by her Lupus is in remission and has been for quite some time. It's "unexplained" and there's "no reason for it," but it is. But my point of telling you about this is to highlight just one area that this illness can effect and that the results aren't always the same. All of my mom's blood work can change over the course of a few months and what once came back as positive, could instead be negative. It's never certain.
There's lot of different medications that they use to manage the symptoms and flare-ups. For the longest time, they used steroids as it appeared to be the most effective method. In the last 5 or 6 years, they figured out that this really off-the-wall drug for malaria (yes, the thing you can get from mosquitoes) is really effective in managing Lupus. It was a fluke, but that's the one my mom is on now and it really has decreased the frequency of her flare-ups. Science is wild.
In the last couple of years, I've started to hear more about this thing that used to feel so isolated to my mom. I've met coworkers with family members who have Lupus-each with a different afflicted area and some much more severe than my mom's. Selena Gomez came out with her story of her battle with it and has even gone through Chemotherapy in an effort to treat her. It doesn't feel quite so invisible anymore. The more we learn about it, the better we can manage it.
So here's to Lupus Awareness Month, here's to my mom, and here's to anyone else suffering from an invisible illness. It's okay that you feel bad. You're not crazy just because your pain or symptoms aren't visible on the outside of your body. You're tougher than you look and you got this.
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