Welcome to my blog!
I originally wrote this for my Caring Bridge site but wanted to share it with my blog readers, too. What follows is my lupus story. Lupus is an invisible illness and those of us with it frequently hear, "But you don't look sick." I hope my story helps people to understand just how deeply invisible illnesses, like lupus, can impact a person's quality of life.
I also hope you see how magnificent God's grace is. Do you know the parable of the sower? Seeds are scattered and they land in a variety of settings. Some land in decent enough soil but the hot sun pounds down on them and they die out. I have felt the heat from the blazing sun of a variety of trials, yet instead of withering, I continue to grow in Christ and my trust in Him deepens with each refining fire. That is purely a work of His grace. May He be praised!
Here's the original "story."
I was diagnosed with MCTD (Mixed Connective Tissue Disease) but "probably lupus" in Dec 2012. Both MCTD and lupus are auto-immune diseases, meaning my immune system attacks my healthy body tissue, rendering it not-so-healthy. Although I did not receive this diagnosis until I was 39, I have had symptoms since my childhood.
Throughout my elementary school years, I experienced recurring swelling in my knees and was unable to participate in most sports or do anything that put undue pressure on my joints, including sitting "Indian style" at school. I was a unique, and often misunderstood, kid. ;)
During my twenties, the symptoms presented themselves more consistently and with greater intensity. Immobilizing pain would strike at unpredictable times and last for random intervals. Out of the blue, a jolt of pain would strike my hip and radiate through my body like a surge of electricity. I would frequently be bed-bound for days at a time, and my husband would have to complete the most mundane tasks for me, like taking off my shoes. I was examined again and again by specialist after specialist (excluding the one I really needed to see: the rheumatologist) only to be told there was nothing wrong with me.
When I married Michael at 22, we wanted to have children as soon as possible; however, we did not conceive for almost 3 years. Our first child miscarried at 12 weeks gestation, our 2nd at 8 weeks. Two more children miscarried early in the pregnancy. After two successful pregnancies (our sons, Ben and Brian, born 13 months apart), I was unable to conceive again.
Now that I've hit 40, lupus is attacking my joints more aggressively, causing some cognitive dysfunction (lupus fog), and creating constant fatigue. In other words, I feel much older than 40. :)
My most recent lab work indicates my inflammation levels are high enough to cause concern and that protein is present in my urine. That means my kidneys could be at risk and it is time for more "serious" treatment.
I am starting methotrexate this week, a drug used in chemotherapy. I will take a much lower dose than those who are taking it to treat cancer; however, I face the same potential side effects: nausea and hair loss. Because I will likely have to take MTX for a long time, I run the risk of liver damage, too.
Thank you for visiting my site and for praying for me. I am thankful for modern medicine and my excellent doctors. I intend to follow their treatment plan. My trust, however, is in God. He is the Great Physician who can set my immune system straight while granting me the grace to live with this condition for as long as He ordains it. He will work this for His glory and my good because He is good and what He ordains is always right.
Thanks for praying for me.
The LORD is near to all who call upon Him, To all who call upon Him in truth. Psalm 145:18 Resting in Him,
Dawn
I also hope you see how magnificent God's grace is. Do you know the parable of the sower? Seeds are scattered and they land in a variety of settings. Some land in decent enough soil but the hot sun pounds down on them and they die out. I have felt the heat from the blazing sun of a variety of trials, yet instead of withering, I continue to grow in Christ and my trust in Him deepens with each refining fire. That is purely a work of His grace. May He be praised!
Here's the original "story."
I was diagnosed with MCTD (Mixed Connective Tissue Disease) but "probably lupus" in Dec 2012. Both MCTD and lupus are auto-immune diseases, meaning my immune system attacks my healthy body tissue, rendering it not-so-healthy. Although I did not receive this diagnosis until I was 39, I have had symptoms since my childhood.
Throughout my elementary school years, I experienced recurring swelling in my knees and was unable to participate in most sports or do anything that put undue pressure on my joints, including sitting "Indian style" at school. I was a unique, and often misunderstood, kid. ;)
During my twenties, the symptoms presented themselves more consistently and with greater intensity. Immobilizing pain would strike at unpredictable times and last for random intervals. Out of the blue, a jolt of pain would strike my hip and radiate through my body like a surge of electricity. I would frequently be bed-bound for days at a time, and my husband would have to complete the most mundane tasks for me, like taking off my shoes. I was examined again and again by specialist after specialist (excluding the one I really needed to see: the rheumatologist) only to be told there was nothing wrong with me.
When I married Michael at 22, we wanted to have children as soon as possible; however, we did not conceive for almost 3 years. Our first child miscarried at 12 weeks gestation, our 2nd at 8 weeks. Two more children miscarried early in the pregnancy. After two successful pregnancies (our sons, Ben and Brian, born 13 months apart), I was unable to conceive again.
Now that I've hit 40, lupus is attacking my joints more aggressively, causing some cognitive dysfunction (lupus fog), and creating constant fatigue. In other words, I feel much older than 40. :)
My most recent lab work indicates my inflammation levels are high enough to cause concern and that protein is present in my urine. That means my kidneys could be at risk and it is time for more "serious" treatment.
I am starting methotrexate this week, a drug used in chemotherapy. I will take a much lower dose than those who are taking it to treat cancer; however, I face the same potential side effects: nausea and hair loss. Because I will likely have to take MTX for a long time, I run the risk of liver damage, too.
Thank you for visiting my site and for praying for me. I am thankful for modern medicine and my excellent doctors. I intend to follow their treatment plan. My trust, however, is in God. He is the Great Physician who can set my immune system straight while granting me the grace to live with this condition for as long as He ordains it. He will work this for His glory and my good because He is good and what He ordains is always right.
Thanks for praying for me.
The LORD is near to all who call upon Him, To all who call upon Him in truth. Psalm 145:18 Resting in Him,
Dawn
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