A lupie is someone who has lupus. I find this an interesting term. I am not yet convinced it is a compliment, however I am convinced that those with lupus do find themselves in difficult circumstances regarding their health.
How do I know this and why am I so convinced? I was diagnosed with lupus this past August (2014). After almost two years of thinking I had arthritis, and two weeks in acute care, there was relief - emotional relief anyways - in hearing the phrase "it's lupus, you have lupus".
And so, after months of being off work, an attempt to return to work, sleepless nights, painful days and a lot of frustration...I continue my journey towards remission.
The extent to which this disease has and continues to affect my family and daily life is at times staggering, at others merely an annoyance, but the disease is always there. Whether in the way I bump into furniture and sometimes other people because I cannot hold my balance, or the way in which I cradle my arms because of the pain I am experiencing, or the frustration I cannot control in part because of medications and in part because I'm not having fun dealing with this disease, lupus is always here. It is always a part of me. It seems to always be robbing me and my family of something.
And yet...there's that joy in the pain. There are the moments of laughter - that yes, cause the pain to increase for a moment because of the chuckling and movements from laughing hard. There are the moments when our family is brought closer together because we have to lean on each other and depend on one another - even when it is a nuisance because I used to be able to do something that I always thought held us together. My children continue to learn new life skills as they are asked to pick up the slack at home. My children continue to learn empathy and compassion that will undoubtedly benefit them and others in the future. My husband and I continue to learn that communication is key to any relationship, especially when there is a chronic illness. I am learning that work will still be there when I am able to return and the building will not burn down without me there. And we continue to witness how our community is lifting us up in prayer, in their thoughts, and with tangible gifts of rides to places when I am unable to drive, meals when we need a hand with food prep, and other appreciated ways.
Faith continues to sustain me in the moments when I feel low and unhappy. It has not changed my circumstance (much like when my first husband died, faith did not bring him back) but it does change how I view my circumstance. I am not walking this journey of lupus alone - I have a community, a family, and a God walking withe me. I have hope, in the doctors and in the plan God has for me, that remission will be part of this story. I am listening to words of hope and promises, God's word, for guidance and peace. I am still showing up for life, there is still much life to live even with lupus. Some days are darker, lonelier and more sad than others, but there is always another day, a new day, a new opportunity to view this journey with excitement and joy.
Saturday, November 15, 2014
Monday, August 25, 2014
Joy in the Pain
This August has been anything but what I expected. Serious illness struck me down at the end of July, kept me in the hospital for a few weeks in August, and brought with it a diagnosis of an autoimmune disease that will have lifelong implications. Not the plan I had for my month of birthday.
Walking through the journey of not knowing what was wrong with me, why I hurt, seeing the fear on the faces of my children, my husband, my family, and my friends, and then getting some unwanted news, forced me to face many emotions.
Over the past year, I had learned that physical pain was a part of my everyday life. Although we had no idea what was causing it. We are overjoyed that we now know what it is. As my husband so poetically said "our dragon now has a face". The face of my dragon is Systemic Lupus Erythematosus Autoimmune Hepatitis. This brings relief as the doctors at first were thinking the scans were showing them other causes for the pain and high liver numbers.
While in the hospital, I coined the phrase "Joy in the Pain". Each day, even when I was wracked with physical pain, or in the grips of emotional terror (seriously, wondering if your liver is going to liquify while you lay in a hospital bed is terrifying - ridiculous apparently - but terrifying), I tried very hard to see the joy in the pain.
The joy came from the friendships I made with other patients who were in the hospital: the little girl who stopped by almost everyday to see my get well soon balloons - who I gave them to, and then she gave them back to me to cheer me up when she was released, in Sue, the woman I learned I had far more in common with than the outside would hint. Or when I was able to walk around the ward, or take a shower, or have a visitor, or take a deep breath, or cuddle in my hospital bed with my children eventhough it was hard for them to visit sometimes because 5 years prior their father had died in a hospital just like this one and spent so much time in the ward across the hallway, or read my Bible and feel that peace that is hard to describe and yet so exciting to tell people about, or when my husband of two years took me outside in a wheel chair for a 'stroll' around the parking lot and told me he thought my character - how I was dealing with all that was going on - was so very beautiful to him.
There was so much joy even in the midst of the pain. There is so much joy even though recovery will take time. There is so much joy even with the uncertainties that this disease may bring and the vigilence that maintaining it will take.
I have a family that came to my side when I needed them. I have children who have shown a resilience beyond anything I have taught them. I have a husband who has shown himself to be a man of great character, truly loving, lifting me up with Bible verses and words of love. I have friends who rallied to my hospital bed, sent messages, and kept me laughing - even when my liver hurt. And I serve a God who is greater than the ups and the downs this life will bring.
I have hope in a healthy future. And each day I will choose to see the joy in the pain, even when I see the pain clearly - because seeing one, I believe, helps me to see the other. But I will choose which one gets my focus...it will always be JOY.
Walking through the journey of not knowing what was wrong with me, why I hurt, seeing the fear on the faces of my children, my husband, my family, and my friends, and then getting some unwanted news, forced me to face many emotions.
Over the past year, I had learned that physical pain was a part of my everyday life. Although we had no idea what was causing it. We are overjoyed that we now know what it is. As my husband so poetically said "our dragon now has a face". The face of my dragon is Systemic Lupus Erythematosus Autoimmune Hepatitis. This brings relief as the doctors at first were thinking the scans were showing them other causes for the pain and high liver numbers.
While in the hospital, I coined the phrase "Joy in the Pain". Each day, even when I was wracked with physical pain, or in the grips of emotional terror (seriously, wondering if your liver is going to liquify while you lay in a hospital bed is terrifying - ridiculous apparently - but terrifying), I tried very hard to see the joy in the pain.
The joy came from the friendships I made with other patients who were in the hospital: the little girl who stopped by almost everyday to see my get well soon balloons - who I gave them to, and then she gave them back to me to cheer me up when she was released, in Sue, the woman I learned I had far more in common with than the outside would hint. Or when I was able to walk around the ward, or take a shower, or have a visitor, or take a deep breath, or cuddle in my hospital bed with my children eventhough it was hard for them to visit sometimes because 5 years prior their father had died in a hospital just like this one and spent so much time in the ward across the hallway, or read my Bible and feel that peace that is hard to describe and yet so exciting to tell people about, or when my husband of two years took me outside in a wheel chair for a 'stroll' around the parking lot and told me he thought my character - how I was dealing with all that was going on - was so very beautiful to him.
There was so much joy even in the midst of the pain. There is so much joy even though recovery will take time. There is so much joy even with the uncertainties that this disease may bring and the vigilence that maintaining it will take.
I have a family that came to my side when I needed them. I have children who have shown a resilience beyond anything I have taught them. I have a husband who has shown himself to be a man of great character, truly loving, lifting me up with Bible verses and words of love. I have friends who rallied to my hospital bed, sent messages, and kept me laughing - even when my liver hurt. And I serve a God who is greater than the ups and the downs this life will bring.
I have hope in a healthy future. And each day I will choose to see the joy in the pain, even when I see the pain clearly - because seeing one, I believe, helps me to see the other. But I will choose which one gets my focus...it will always be JOY.
Wednesday, July 16, 2014
The World is full of Beauty
It is quite amazing that so much surrounds us, and so often, we miss it. I don't mean we miss our bus, or we miss our favourite television program, I mean we really miss the important things that happen to be around us all the time, things that are simply doing and being, and yet we miss them.
Allow me to quantify. Sometimes, missing your bus is important. I'm not taking away from that. Sometimes having the dinner on the table by 6 p.m. is really important. Sometimes it isn't. Sometimes seeing the butterfly cross your path is important. Sometimes smiling at the little kid jump in the puddles you just worked hard to avoid is important. Why are they important? Because they remind us that we are not all there is. These things show us that there is more to life than the busyness that takes up far too much of our time.
I say this as I am one who too often is caught up with how things look and how things should be rather than what things really are and the relationships that are built along the way when I sometimes take a moment to see the things around me.
This past few days, I have had opportunity to sit back, more specifically sit back by a pool, in a beautiful part of the world, and see what is going on around me, see what is going on in my head. Some of the things I have 'witnessed' have been from a distance, in that my children have had an opportunity to spread their own wings, without me at home. At this point, does it really matter that they didn't have dinner at 6 p..m.? Or that they probably have not even looked at a vegetable that did not come on a pizza? or that clothes are probably, even as I type this sentence, sitting on the floor where they left them last night...or a few days ago? Not at all. Because they are building their relationship, as siblings. That is so much more important. That is the wonder of life. That is where the magic happens...the little things.
So when I return home...I will remind myself that the dishes in the sink are not a slight to me, that my children not dusting is not them saying they don't love me, they were busy developing their relationship. Something I should do with them as often as I can, and sometimes that should mean I forgo the dusting...and just sit back, and watch the wonder of the simple things that surround me.
Allow me to quantify. Sometimes, missing your bus is important. I'm not taking away from that. Sometimes having the dinner on the table by 6 p.m. is really important. Sometimes it isn't. Sometimes seeing the butterfly cross your path is important. Sometimes smiling at the little kid jump in the puddles you just worked hard to avoid is important. Why are they important? Because they remind us that we are not all there is. These things show us that there is more to life than the busyness that takes up far too much of our time.
I say this as I am one who too often is caught up with how things look and how things should be rather than what things really are and the relationships that are built along the way when I sometimes take a moment to see the things around me.
This past few days, I have had opportunity to sit back, more specifically sit back by a pool, in a beautiful part of the world, and see what is going on around me, see what is going on in my head. Some of the things I have 'witnessed' have been from a distance, in that my children have had an opportunity to spread their own wings, without me at home. At this point, does it really matter that they didn't have dinner at 6 p..m.? Or that they probably have not even looked at a vegetable that did not come on a pizza? or that clothes are probably, even as I type this sentence, sitting on the floor where they left them last night...or a few days ago? Not at all. Because they are building their relationship, as siblings. That is so much more important. That is the wonder of life. That is where the magic happens...the little things.
So when I return home...I will remind myself that the dishes in the sink are not a slight to me, that my children not dusting is not them saying they don't love me, they were busy developing their relationship. Something I should do with them as often as I can, and sometimes that should mean I forgo the dusting...and just sit back, and watch the wonder of the simple things that surround me.
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