Just sat down after a tiring day. Overall, the day wasn't anything out of the ordinary. I had some pain earlier in the day that slowly progressed as the day went on. It's happened before, it'll happen again. However, the moment I sat down a wave of emotions washed over me. Tired, obviously - I have 2 small children. Frustrated because I have pain that I can't do much else to relieve. Sad and afraid because I want to be the best for my kids but I want to cry from the pain sometimes. I don't want them to suffer or have anything less than an awesome childhood just because they drew the short straw in the mom department.
I try to keep a positive attitude most of the time. I'm completely aware that I'm lucky. I could be in worse condition. Sometimes it just hits me like a truck and I get overwhelmed by reality. Does that ever happen to you?
Monday, June 25, 2018
Wednesday, June 13, 2018
An Introduction
Since I'm essentially starting over, I thought I'd re-introduce myself with my Lupus life included. I'm Megan - a stay-at-home mom to 2 girls, bake cupcakes on the side, and married to my high school sweetheart. I also happen to be a Fibromyalgia and Lupus survivor/warrior. I was diagnosed in 2001 at the age of 16. I'm one of the lucky ones; it took less than 6 months to get a diagnosis. For many it can take years from symptom onset to official diagnosis. If you aren't familiar with Lupus you can learn more at https://resources.lupus.org/entry/what-is-lupus. I won't go into the full explanation here because chances are, if you're reading this, you already know about the disease.
For me, the pain started slowly. First my hands, then my feet along with some swelling. Then my family took a beach vacation. We spent all day out in the sun, playing on the beach and swimming in the water. That's when I woke up one morning unable to stand up straight or take a step without a great deal of pain. My family thought I was just being dramatic or sore from playing too hard, as did I. A chronic disease was the farthest thing from our minds. I had always been the healthiest of my siblings. The pain got progressively worse from there. Over a month after returning home, I remember waking up one morning and crying out for my sister to get my parents; I couldn't move without extreme pain and was unable to lift the sheet off myself. That's when I was truly scared.
Once I received my diagnosis and got on the proper medication I was able to get my life back, for the most part. Obviously, things had to change. Limit sun exposure, limit strenuous activity, so on and so forth. Over the years I have been in and out of remission. It's frustrating; even when I'm being the model patient, always taking my meds and being careful with my activity, I still manage to slip out of remission. Still, I know others have it worse. I'm lucky to still have two (original) functioning kidneys and not be on chemo (sometimes used to treat Lupus). That being said, Lupus sucks. I will ALWAYS know others have it worse. As long as I'm surviving, others have it worse. That doesn't mean I don't get beat down by it all. It doesn't mean I don't get tired of taking medication every day for the rest of my life, medication that hurts my stomach and makes me nauseated but keeps my body from attacking my vital organs. It doesn't mean I'm not allowed to be frustrated/angry/upset that I have to prop my legs up and ice my joints as soon as I get my kids to bed because I've been in pain all day (like I'm doing right now). I have "Lupus Warrior" on my car to encourage me because some days I don't feel like fighting but I need to. I'm trying. Struggling, but trying. I fight for a life with my husband. I fight so I can be there for my kids whenever they need me. I fight to help others who may struggle. I may not have the strength every day, but I'll try harder the next.
Sorry for the lengthy post. They won't all be like this. If you made it this far, thanks. Are you struggling? You aren't alone.
For me, the pain started slowly. First my hands, then my feet along with some swelling. Then my family took a beach vacation. We spent all day out in the sun, playing on the beach and swimming in the water. That's when I woke up one morning unable to stand up straight or take a step without a great deal of pain. My family thought I was just being dramatic or sore from playing too hard, as did I. A chronic disease was the farthest thing from our minds. I had always been the healthiest of my siblings. The pain got progressively worse from there. Over a month after returning home, I remember waking up one morning and crying out for my sister to get my parents; I couldn't move without extreme pain and was unable to lift the sheet off myself. That's when I was truly scared.
Once I received my diagnosis and got on the proper medication I was able to get my life back, for the most part. Obviously, things had to change. Limit sun exposure, limit strenuous activity, so on and so forth. Over the years I have been in and out of remission. It's frustrating; even when I'm being the model patient, always taking my meds and being careful with my activity, I still manage to slip out of remission. Still, I know others have it worse. I'm lucky to still have two (original) functioning kidneys and not be on chemo (sometimes used to treat Lupus). That being said, Lupus sucks. I will ALWAYS know others have it worse. As long as I'm surviving, others have it worse. That doesn't mean I don't get beat down by it all. It doesn't mean I don't get tired of taking medication every day for the rest of my life, medication that hurts my stomach and makes me nauseated but keeps my body from attacking my vital organs. It doesn't mean I'm not allowed to be frustrated/angry/upset that I have to prop my legs up and ice my joints as soon as I get my kids to bed because I've been in pain all day (like I'm doing right now). I have "Lupus Warrior" on my car to encourage me because some days I don't feel like fighting but I need to. I'm trying. Struggling, but trying. I fight for a life with my husband. I fight so I can be there for my kids whenever they need me. I fight to help others who may struggle. I may not have the strength every day, but I'll try harder the next.
Sorry for the lengthy post. They won't all be like this. If you made it this far, thanks. Are you struggling? You aren't alone.
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