I first realized I was different from other kids my age when I was 9. While others skipped, jumped and ran with out a care, I was always two steps behind them holding my breath; so I wouldn’t cry out in pain with each step. At night when my mind wasn’t focused on who I was going to chase next, I was reminded of the pain that washed over me. I would cry through the night, and at times my mother would soak me in a hot bath to help ease the pain. Sharp pain in my ankles and throbbing aches in my knees were to blame. After many reoccurring nights of this, my mother sought the opinion of our family doctor, who promptly diagnosed me with growing pains and reassured us both that I would soon grow out of this “stage”. That was in 1995.
At age 14 my feet began to ache. Every morning I dreaded putting my feet onto the floor, because the slightest pressure on my feet felt like a thousand nails stabbing the soles of my feet. I knew if I limped to the shower I’d find some relief. My joints would loosen up and I could begin my day.
I ignored the pain and continued playing my favorite sport. Soccer. After soccer practices I usually felt frustrated with my self because I knew I was the worse player on the team, and the harder I tried the more my body would let me down. When I would take off to run, my joints would sometimes freeze, or my foot felt like it was going to shatter after kicking the ball.
During this time I also noticed smaller things, such as, buttoning my shirts, zipping my coats, or even holding a pencil, were becoming more trivial.
Age 16 approached and the pain worsened. I began to not want to play soccer any more because of the pain I experienced during and after a game. Cold weather became my mortal enemy. During the cold months I felt like my whole body could shatter. I also began experiencing swollen lymph nodes under my arms. They would swell to the size of a golf ball.
I finally decided to talk to my doctor about all the pain I felt. Her diagnosis was I was a very depressed anxious person. The pain I was experience was all in my head. Depression can make you think you hurt.
I couldn’t believe that all this pain was in my head. It felt so real. She dismissed all my concerns I couldn’t put my finger on what I was so depressed about. I really did like my life. I was happy with my friends, and my home life. The pain was the only thing I could think I should be depressed over. That was in 2002.
I’ll fast forward a few years to 2007. I’d dealt with exhaustion for a long time. However working behind the service desk at Toys R Us, I was happily cleaning the front desk and greeting customers when the worst exhaustion spell I ever had hit him. I was returning a customers item when I felt like my blood had drained from my entire body. Everything grew extremely dim, and I broke out in a cold shaky sweat. I remember the customer telling me I should sit down. I held on to the desk for support. I couldn’t pass out here. Everything felt far away, the voices around me, my eye sight. Luckily someone took over the service desk to allow me to retreat. I began shaking hard. My breath became fast, and I felt like my heart would literally jump out of my chest. I told my boss I had to go home. He excused me. I don’t remember the drive home. But I can tell you I slept for 14 hours straight after that. When I woke up I felt fine.
I’d had several attacks like that before but none quite as scary and bad as that one. So I decided to go to an electro physiologist. I wore a heart monitor for a month, and caught a few of my episodes on the recorder. He diagnosed me with sinus tachycardia.
With that diagnosis, he still didn’t know what was causing my sinus tachy. So I took a daily medication to help keep my heart steady. I still had a few more episodes after that.
2008 I began working in a nursing home. To get me through an 8 hour shift of lifting patients I would consume more then 8 Motrin a night. My Body would ache, and the episodes became more frequent the more hours I worked. After a few months of going like this I took a month off to regroup. During my break I found out I was pregnant.
My pregnancy was very hard. I turned toxic for unknown reasons. I managed to deliver a beautiful healthy, 6lb 7oz baby girl. After holding her I realized I had to find what was wrong with me. I wanted to be the best mother I could be. I couldn’t talk to my new doctor just yet about everything I’d endured with my former family doctor. I couldn’t endure being told it might be all in my head…again.
2009 I gave birth to a beautiful, healthy 8lb 9oz baby boy, after a very long difficult pregnancy. Again I turned toxic for unknown reasons, but endured the bed rest to become a mother yet again.
After my second child, things took a turn for the worse. The pain became intolerable. I was exhausted. Actually exhausted really isn‘t the best adjective to how I felt. I became lost again. I was so happy to have my two beautiful babies. However, I felt disappointed in my self. After watching other mothers play with their children, running, jumping, standing. The frustration would set in. I spent many times crying on the way home from the park, because I felt like a bad mother. Why couldn’t I do the things other moms could do. I wanted to get on the ground and play too. I wanted to pick up my children and swing them and feel the carefree laughter.
I got brave. I wanted to be that mom, who could do anything. I wanted it so bad. I broke through my fear of being told I was crazy and told my new doctor how I’d felt for years. Showed her my charts. She stared at me in disbelief. Her first words were “Why on earth did you not tell me this?, did you know this was why you turned toxic during your pregnancies!” I just looked at my shoes and said “because I thought you’d accuse me of being depressed, and I worried about people thinking I was one of those crazy depressed mothers.”
She ordered a special blood test immediately. One I’d never had before. It turned up positive for Rheumatoid arthritis. She then further ordered another special blood test, which shows the antibodies created during a lupus flare up attack. She told me, I believe you have Lupus. Lupus? What the heck is that? She never explained to me fully what lupus involved.
I loved my doctor, but she was not aggressive. She didn’t tell me what could or would happen with out treatment. I never took it seriously. I continued to struggle, and again I lost hope. Until I met someone like me. Someone who had the same types of bad days. The same types of aches. It sparked my hope. Hope that I would find an end to the pain. To be the mom I wanted to be.
I began again, with a new more aggressive doctor. She immediately agreed I had lupus. She went through the check list, swollen lymph nodes, loss of hair, pain in chest, red soar joints, rash on chest, rash on hands, mouth soars and so on. Then she took her wooden stick to look at my tonsils, but she stopped, and looked at my nose. She traced the outline of a butterfly, the faintest little butterfly rash across my face. She asked how long I had had that. I shook my head and had no idea what she was talking about. She held up the mirror, and I said oh that’s just my complexion, I’ve always had a hint of redness to my face. Everyone always asks if I’m wearing blush. She said, I’m afraid its another symptom to your lupus. My rash on my face only hurts during a flare up, and only turns slightly red. She has made an appointment for me to see a Rheumatologist. I see him for the first time March 21st 2011. I’ve waited six very long months to see him.
This year I am walking for lupus. I’ve finally found a name for what I have, most would be devastated to hear the words lupus. For me, it was a relief. I wasn’t crazy. In fact, I have a whole team of friends who are just as lupie as I am!
Chronic bruisings
At age 14 my feet began to ache. Every morning I dreaded putting my feet onto the floor, because the slightest pressure on my feet felt like a thousand nails stabbing the soles of my feet. I knew if I limped to the shower I’d find some relief. My joints would loosen up and I could begin my day.
I ignored the pain and continued playing my favorite sport. Soccer. After soccer practices I usually felt frustrated with my self because I knew I was the worse player on the team, and the harder I tried the more my body would let me down. When I would take off to run, my joints would sometimes freeze, or my foot felt like it was going to shatter after kicking the ball.
During this time I also noticed smaller things, such as, buttoning my shirts, zipping my coats, or even holding a pencil, were becoming more trivial.
Age 16 approached and the pain worsened. I began to not want to play soccer any more because of the pain I experienced during and after a game. Cold weather became my mortal enemy. During the cold months I felt like my whole body could shatter. I also began experiencing swollen lymph nodes under my arms. They would swell to the size of a golf ball.
I finally decided to talk to my doctor about all the pain I felt. Her diagnosis was I was a very depressed anxious person. The pain I was experience was all in my head. Depression can make you think you hurt.
I couldn’t believe that all this pain was in my head. It felt so real. She dismissed all my concerns I couldn’t put my finger on what I was so depressed about. I really did like my life. I was happy with my friends, and my home life. The pain was the only thing I could think I should be depressed over. That was in 2002.
I’ll fast forward a few years to 2007. I’d dealt with exhaustion for a long time. However working behind the service desk at Toys R Us, I was happily cleaning the front desk and greeting customers when the worst exhaustion spell I ever had hit him. I was returning a customers item when I felt like my blood had drained from my entire body. Everything grew extremely dim, and I broke out in a cold shaky sweat. I remember the customer telling me I should sit down. I held on to the desk for support. I couldn’t pass out here. Everything felt far away, the voices around me, my eye sight. Luckily someone took over the service desk to allow me to retreat. I began shaking hard. My breath became fast, and I felt like my heart would literally jump out of my chest. I told my boss I had to go home. He excused me. I don’t remember the drive home. But I can tell you I slept for 14 hours straight after that. When I woke up I felt fine.
I’d had several attacks like that before but none quite as scary and bad as that one. So I decided to go to an electro physiologist. I wore a heart monitor for a month, and caught a few of my episodes on the recorder. He diagnosed me with sinus tachycardia.
With that diagnosis, he still didn’t know what was causing my sinus tachy. So I took a daily medication to help keep my heart steady. I still had a few more episodes after that.
2008 I began working in a nursing home. To get me through an 8 hour shift of lifting patients I would consume more then 8 Motrin a night. My Body would ache, and the episodes became more frequent the more hours I worked. After a few months of going like this I took a month off to regroup. During my break I found out I was pregnant.
My pregnancy was very hard. I turned toxic for unknown reasons. I managed to deliver a beautiful healthy, 6lb 7oz baby girl. After holding her I realized I had to find what was wrong with me. I wanted to be the best mother I could be. I couldn’t talk to my new doctor just yet about everything I’d endured with my former family doctor. I couldn’t endure being told it might be all in my head…again.
2009 I gave birth to a beautiful, healthy 8lb 9oz baby boy, after a very long difficult pregnancy. Again I turned toxic for unknown reasons, but endured the bed rest to become a mother yet again.
After my second child, things took a turn for the worse. The pain became intolerable. I was exhausted. Actually exhausted really isn‘t the best adjective to how I felt. I became lost again. I was so happy to have my two beautiful babies. However, I felt disappointed in my self. After watching other mothers play with their children, running, jumping, standing. The frustration would set in. I spent many times crying on the way home from the park, because I felt like a bad mother. Why couldn’t I do the things other moms could do. I wanted to get on the ground and play too. I wanted to pick up my children and swing them and feel the carefree laughter.
I got brave. I wanted to be that mom, who could do anything. I wanted it so bad. I broke through my fear of being told I was crazy and told my new doctor how I’d felt for years. Showed her my charts. She stared at me in disbelief. Her first words were “Why on earth did you not tell me this?, did you know this was why you turned toxic during your pregnancies!” I just looked at my shoes and said “because I thought you’d accuse me of being depressed, and I worried about people thinking I was one of those crazy depressed mothers.”
She ordered a special blood test immediately. One I’d never had before. It turned up positive for Rheumatoid arthritis. She then further ordered another special blood test, which shows the antibodies created during a lupus flare up attack. She told me, I believe you have Lupus. Lupus? What the heck is that? She never explained to me fully what lupus involved.
I loved my doctor, but she was not aggressive. She didn’t tell me what could or would happen with out treatment. I never took it seriously. I continued to struggle, and again I lost hope. Until I met someone like me. Someone who had the same types of bad days. The same types of aches. It sparked my hope. Hope that I would find an end to the pain. To be the mom I wanted to be.
I began again, with a new more aggressive doctor. She immediately agreed I had lupus. She went through the check list, swollen lymph nodes, loss of hair, pain in chest, red soar joints, rash on chest, rash on hands, mouth soars and so on. Then she took her wooden stick to look at my tonsils, but she stopped, and looked at my nose. She traced the outline of a butterfly, the faintest little butterfly rash across my face. She asked how long I had had that. I shook my head and had no idea what she was talking about. She held up the mirror, and I said oh that’s just my complexion, I’ve always had a hint of redness to my face. Everyone always asks if I’m wearing blush. She said, I’m afraid its another symptom to your lupus. My rash on my face only hurts during a flare up, and only turns slightly red. She has made an appointment for me to see a Rheumatologist. I see him for the first time March 21st 2011. I’ve waited six very long months to see him.
This year I am walking for lupus. I’ve finally found a name for what I have, most would be devastated to hear the words lupus. For me, it was a relief. I wasn’t crazy. In fact, I have a whole team of friends who are just as lupie as I am!
Chronic bruisings
Mouth sores i get every flare up
My hands normally My hands swollen during a flare up
Rash i get across my chest
I’m so sorry you went through all that and hope you are getting help and reduced symptoms
ReplyDeleteI have been sick for about 15 years. Hypothyroid, intertistial cystitis, neuropathy, severe osteoporosis, dialated bile ducts, fybromyalgia, chronic pain, swollen legs, chest pain, problems breathing, mouth sores and many other things. The Last Dr said I am depressed and that’s what is causing my pain and health problems. She said they just seem bad because I’m depressed. I get low grade fevers all the time and they finally removed my tonsils because they kept getting inflamed. I am not a depressed person I love life and doing things but I am feeling hopeless lately. I have no faith in Drs. My ruemotologist said if he was my boyfriend he would be glad because my bloodowrk looks good and I have good blood pressure, weight, I look good etc. I thought I was hearing things that was so inappropriate of him to say. And I feel horrible and I’m so much pain sometimes I do hope to not live to be old. Anyway good luck. It’s nice to know I am not alone in these struggles.