Fight Like a Girl
Almost fourteen years ago, I was sitting in a doctors office in Colorado Springs with my mom wondering why my ankle and knee hurt so bad. Now, I am typing away at my laptop at one in the morning trying to think of how to even begin my story with my JRA.
Before I begin, I want to explain what my diagnosis is along with why I am starting this blog.
Juvenile Rheumatoid Arthritis or JRA is when the body's immune system attacks its own tissue. The typical symptoms are joint pain, swelling, high fevers, rash, stiffness, and chronic fatigue. There are different types of JRA. The one that I have is poly-articular JRA. This means that five or more joints are affected. JRA is an auto immune disorder.
I was diagnosed at eight but looking back before the diagnosis, there were signs I may have had it earlier in life.
I'm starting this blog for multiple reasons. But the big one is to just be able to vent about problems I have had over the years and let others with similar problems that they are not alone. It can be pretty isolating when you are in so much pain and I had found comfort in the internet and connecting with others. I hope that is what this ends up doing for even just one person, then I will be successful with this blog!
A good friend came up with the url name, 'painful step forward' which I agree is a great name. However, "fight like a girl" is staying as the title for this blog because googling around for inspiring images when it comes to JRA that saying has always popped up. It means something to me.
So, back to my story.
Fourteen years ago, I was having trouble with my right ankle. It hurt pretty bad and I kept complaining multiple times. Now, the good thing for having a nurse for a mom means she knows when to take pain seriously and know to care for you when you're sick. I complained and complained and at first, it seemed like I sprained it. I had x-rays and all sorts of things done. But, it never let up. Eventually, my knee gave out on me before school when I was putting my shoes on. I couldn't put a lot of pressure on my knee so I wouldn't walk on it. It hurt so bad. That day I stayed home from school and the next day, I was in the doctor's office hearing words like "inflammation" "auto immune" and "arthritis" which at eight years old, is pretty scary. I remember my mom trying to call the Denver Children's Hospital from the doctor's office and calling my dad to tell him we had to go to Denver. I got in to see my rhuematologist, Dr.Hollister and all the blood work began.
A few months later, I had the diagnosis of poly-articular JRA. I use to explain to people that JRA is when your body gets confused and attacks its self. In my case, it attacks the stuff in my joints. I didn't understand why I hurt so bad. I also didn't understand why I had to take such yucky medicine.
Unfortunately, I would get use to this pain pretty fast.
Fast forward to now.
I have many different ways of coping with pain. One of them is pretending it is not there and thus I don't feel it. This can frustrate people because I don't like to talk about my pain or how I'm feeling physically all that much. It's a practice of ignoring something so well internally and focusing yourself externally. It takes a lot of time. But, I realized in the past year that this isn't always great for me because if my pain is worse and I don't know it, I get very cranky and mean. I don't even know I'm doing it until someone points it out to me.
Another way of coping is actually venting to someone who also has chronic pain. One of my good friends has fibro and she and I rant about how much everything hurts. It's great! We don't get pity like 'normal' people typically give us. We don't get annoyed at each other for complaining. We just understand which I did not know I need this kind of relationship until I reached out to her this past fall. I'm super thankful she is around to listen when everything hurts and I just want to stay in bed!
Currently, I am dealing with hand, wrist, knee, hip, shoulder and knee pain. Which seems like a lot to the average person, but for me it's really not that bad. The "pain scale" (something I hate) is a scale from 0 (no pain) to 10 (the worst pain ever). My pain averages around a 3-4 on good days. On bad days, it jumps up to a 8 or 9. It varies all the time and it's different types of pain, too. Stiffness is different from physical JRA pain and it's also different from a sore muscle.
Today, I am at a 3 on the pain scale. Today, I had a really hard time starting my day and I even stayed in bed for a long time (like normal).
But I don't want my readers to feel sorry for me. This is something I have known for fourteen years! It's something I know well and something I know how to deal with. It is something that is just a little different than someone else's daily routine.
I have gotten over the fact that I am not 'normal' when it comes to things. But, I am my version of normal.
Today, I did go to the gym and did 4 miles on the stationary bike. Today, I made dinner for my family and got lots of homework done for school. Today was a pretty good day.
Thanks for reading!
-Leah
Before I begin, I want to explain what my diagnosis is along with why I am starting this blog.
Juvenile Rheumatoid Arthritis or JRA is when the body's immune system attacks its own tissue. The typical symptoms are joint pain, swelling, high fevers, rash, stiffness, and chronic fatigue. There are different types of JRA. The one that I have is poly-articular JRA. This means that five or more joints are affected. JRA is an auto immune disorder.
I was diagnosed at eight but looking back before the diagnosis, there were signs I may have had it earlier in life.
I'm starting this blog for multiple reasons. But the big one is to just be able to vent about problems I have had over the years and let others with similar problems that they are not alone. It can be pretty isolating when you are in so much pain and I had found comfort in the internet and connecting with others. I hope that is what this ends up doing for even just one person, then I will be successful with this blog!
A good friend came up with the url name, 'painful step forward' which I agree is a great name. However, "fight like a girl" is staying as the title for this blog because googling around for inspiring images when it comes to JRA that saying has always popped up. It means something to me.
So, back to my story.
Fourteen years ago, I was having trouble with my right ankle. It hurt pretty bad and I kept complaining multiple times. Now, the good thing for having a nurse for a mom means she knows when to take pain seriously and know to care for you when you're sick. I complained and complained and at first, it seemed like I sprained it. I had x-rays and all sorts of things done. But, it never let up. Eventually, my knee gave out on me before school when I was putting my shoes on. I couldn't put a lot of pressure on my knee so I wouldn't walk on it. It hurt so bad. That day I stayed home from school and the next day, I was in the doctor's office hearing words like "inflammation" "auto immune" and "arthritis" which at eight years old, is pretty scary. I remember my mom trying to call the Denver Children's Hospital from the doctor's office and calling my dad to tell him we had to go to Denver. I got in to see my rhuematologist, Dr.Hollister and all the blood work began.
A few months later, I had the diagnosis of poly-articular JRA. I use to explain to people that JRA is when your body gets confused and attacks its self. In my case, it attacks the stuff in my joints. I didn't understand why I hurt so bad. I also didn't understand why I had to take such yucky medicine.
Unfortunately, I would get use to this pain pretty fast.
Fast forward to now.
I have many different ways of coping with pain. One of them is pretending it is not there and thus I don't feel it. This can frustrate people because I don't like to talk about my pain or how I'm feeling physically all that much. It's a practice of ignoring something so well internally and focusing yourself externally. It takes a lot of time. But, I realized in the past year that this isn't always great for me because if my pain is worse and I don't know it, I get very cranky and mean. I don't even know I'm doing it until someone points it out to me.
Another way of coping is actually venting to someone who also has chronic pain. One of my good friends has fibro and she and I rant about how much everything hurts. It's great! We don't get pity like 'normal' people typically give us. We don't get annoyed at each other for complaining. We just understand which I did not know I need this kind of relationship until I reached out to her this past fall. I'm super thankful she is around to listen when everything hurts and I just want to stay in bed!
Currently, I am dealing with hand, wrist, knee, hip, shoulder and knee pain. Which seems like a lot to the average person, but for me it's really not that bad. The "pain scale" (something I hate) is a scale from 0 (no pain) to 10 (the worst pain ever). My pain averages around a 3-4 on good days. On bad days, it jumps up to a 8 or 9. It varies all the time and it's different types of pain, too. Stiffness is different from physical JRA pain and it's also different from a sore muscle.
Today, I am at a 3 on the pain scale. Today, I had a really hard time starting my day and I even stayed in bed for a long time (like normal).
But I don't want my readers to feel sorry for me. This is something I have known for fourteen years! It's something I know well and something I know how to deal with. It is something that is just a little different than someone else's daily routine.
I have gotten over the fact that I am not 'normal' when it comes to things. But, I am my version of normal.
Today, I did go to the gym and did 4 miles on the stationary bike. Today, I made dinner for my family and got lots of homework done for school. Today was a pretty good day.
Thanks for reading!
-Leah
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