Oh love that will not let me go I rest my weary soul in thee.
I give thee back the life I owe that in thine ocean depths its flow
May richer, fuller be.
Oh light that follows all my way I yield my flickering torch to thee.
My heart restores its borrowed ray that in the sunshine's blaze its day
May brighter, fairer be.
Oh joy that seeks me through the pain I cannot close my heart to thee.
I trace the rainbow through the rain and feel the promise is not in vain
That morn shall tearless be.
-Oh love that will not let me go, George Matheson, written June 6, 1882
I am no expert. Far from it. I may not even be right. But as I began to put my thoughts and feelings into words, I realized that to provide an honest look into my journey with lupus I would have to talk about God.
I feel like my spiritual life has been so deeply impacted by my health. While words seem inadequate to explain this, I will offer an attempt to share this profound part of my spiritual journey.
Before my diagnosis, I trusted God. I even relied on Him daily for many things. I prayed over my writing and I prayed over my cooking and if something turned out well I knew it was because it had been blessed by Him.
Sometimes I offered thanks for my health, but I never really asked God or credited Him for my strength to get out of bed in the morning. Thousands of mornings I woke up and rolled out and lived my day thinking that my strength came from the rest I received or the food I ate. If I even thought about it at all.
Lupus showed me very clearly I actually have no control over anything. If I am to get out of bed, it is God who will provide that strength. If I am to have energy, it will come from Him. (And that isn't just me -- it's the same for all of us. I just never realized how true that is until now.)
He will be responsible for my healing, too. Not in a refuse-all-types-of-medical-intervention kind of way. But the success I have found with my herbalist is only because God led me to him and He blesses that treatment. And my future good days are gifts from Him. However it is that I am finally cured of this, it will be all to His credit.
Which begs the question: Why doesn't He just heal me now? Why didn't He just protect me from lupus to begin with?
My answer is I don't know. (I also don't know why He chose to deliver me from poverty and from abuse and from a great number of other things. And I don't know why He has protected me from accidents and cancer and pain of all kinds.)
But while I have lupus, He is working things out for good. I hope that is as obvious to everyone around me as it has been to me. That is not a blase, glossed-over answer. I can say that God is good ALL the time with confidence. Mine is not a weak or a blind faith. It has been tested and tried. I have wrestled with God. I have tried other ways. I do not always know and I do not always understand, but I can see clearly that His ways truly are higher. And He is loving beyond words. He is true perfection. And if He cannot be trusted then trust cannot even exist.
I am still learning the depths of those heavy truths. His patience is immeasurable. (For you, too.)
I was not (and am not) happy to be sick. Lupus would have been one of the very last diagnoses I would have picked for myself. God has heard a lot about this from me. But I have come to realize that we all have burdens and struggles in this life. The label for one of mine is lupus. That doesn't make life any harder or any easier for me than for anyone else with their own burdens and struggles.
Though I may feel like one at times, I am not a victim. I am not undeserving of lupus. By that I mean I am not some extra special person exempt from any of the hard times faced by all humans in this fallen world. If anyone should have been exempt it was Jesus. And He bore it all. So I am just like all the other people. Waiting for the Lord to fully redeem us. (He is and He will.)
And I have felt the Lord walk closely -- hold tightly -- to me every single inch of this journey. He has given me strength I could never have imagined. And He has sent me so many sweet blessings along the way. Poignant gifts to remind me of His steadfast love.
I am not thankful for lupus, but I am thankful that God used it as a tool to draw me closer to Him, closer to my husband, closer to many people in my life. I am thankful to have been given this new perspective on living. I imagine I would have continued to waste years of my life if I didn't come to realize how precious time is.
Like the rest of the world, I am a work in progress. And I am so thankful to serve a Savior who loves me so dearly, who will not let me go. Who is making me whole in every way and carrying me tenderly through until I am (and He is) finally complete.
Blessed be the Lord who would not give [me] up.
Blessed be the Lord for His unfailing love.
The snare is broken and [I] have escaped.
[My] help is the name of the Lord.
Blessed be the Lord!
-Had it not been the Lord, Leonard Smith, Jr.
---
This post is the final in a series on how lupus has affected me.
Click on the links below to read more:
Part 1: Introduction, The horrific mystery disease
Part 2: The bad times
Part 3: How lupus made me a better wife
Part 4: A practice of patience
Part 5: More on the pit
Part 6: Exhaustion
Part 7: Saying no
Part 8: Taming fear and anxiety
Part 9: The scapegoat
My diagnosis
My herbalist and the treatment option I am choosing right now
My recent lifestyle changes
To learn more about lupus, you may visit the Lupus Foundation of America.
Saturday, May 31, 2014
Tuesday, May 27, 2014
Having lupus, Part 9: The scapegoat
The search for a scapegoat is the easiest of all hunting expeditions.
-Dwight Eisenhower
Born from my splash into alternative medicine shortly before my diagnosis, the rash of remedies suggested to me by well-meaning acquaintances after my diagnosis and -- of course -- my lifelong quest for self gratification, I began looking for benefits to chronic illness quickly after receiving the news.
Maybe since lupus was to blame for a lot of bad stuff in my life I could also use it to my advantage sometimes. And that was the beginning of my plan.
Already I was swigging a concoction of herbs each morning and had listened to all kinds of unscientifically-proven treatments. I felt willing to try anything. So why not try anything? And see how it would affect the lupus.
Maybe my lupus symptoms would disappear on a beach in Mexico. Worth a shot. (Still haven't tried this one, but plan to and also have learned that one must be patient through long trials to reach the full effectiveness of some treatments.)
The stars aligned one week when I ate out several times at some of my all-time favorite restaurants. I also felt really good that week. Coincidence? I prefer to call it restaurant therapy. And rank it as highly effective.
Might lupus symptoms rise and fall based on potato chip or dark chocolate consumption? Only one way to find out. Could Coke alleviate symptoms? I'm not willing to say no yet.
And then: Might excessive dish washing cause a flare? Maybe. I've decided not to risk it. Or too much house cleaning? Better safe than sorry, I say.
That time I embarrassed myself. The lupus was affecting my cognition, my balance, my whatever it was, I'm sure. Did I just make a mistake? It wasn't me, it was the lupus.
Whether it is buying (or eating) something, engaging in or avoiding an activity, or explaining some shortcoming or discrepancy -- my new ace in the hole is simply on account of the lupus.
I played the lupus card to get A LOT of wonderful help moving (though I'm sure our sweet friends would have helped anyway). Lupus got me out of months of laundry and other chores. Really, I haven't found the bounds yet for exploiting this disease.
But, I plan to test those limits to their full extent in the months and years ahead. I always hear people saying to look on the bright side, to take the good with the bad... that's just what I'm doing. Making lemonade.
---
This post is part of a series on how lupus has affected me.
Click on the links below to read more:
Part 1: Introduction, The horrific mystery disease
Part 2: The bad times
Part 3: How lupus made me a better wife
Part 4: A practice of patience
Part 5: More on the pit
Part 6: Exhaustion
Part 7: Saying no
Part 8: Taming fear and anxiety
My diagnosis
My herbalist and the treatment option I am choosing right now
My recent lifestyle changes
To learn more about lupus, you may visit the Lupus Foundation of America.
-Dwight Eisenhower
Born from my splash into alternative medicine shortly before my diagnosis, the rash of remedies suggested to me by well-meaning acquaintances after my diagnosis and -- of course -- my lifelong quest for self gratification, I began looking for benefits to chronic illness quickly after receiving the news.
Maybe since lupus was to blame for a lot of bad stuff in my life I could also use it to my advantage sometimes. And that was the beginning of my plan.
Already I was swigging a concoction of herbs each morning and had listened to all kinds of unscientifically-proven treatments. I felt willing to try anything. So why not try anything? And see how it would affect the lupus.
Maybe my lupus symptoms would disappear on a beach in Mexico. Worth a shot. (Still haven't tried this one, but plan to and also have learned that one must be patient through long trials to reach the full effectiveness of some treatments.)
The stars aligned one week when I ate out several times at some of my all-time favorite restaurants. I also felt really good that week. Coincidence? I prefer to call it restaurant therapy. And rank it as highly effective.
Might lupus symptoms rise and fall based on potato chip or dark chocolate consumption? Only one way to find out. Could Coke alleviate symptoms? I'm not willing to say no yet.
And then: Might excessive dish washing cause a flare? Maybe. I've decided not to risk it. Or too much house cleaning? Better safe than sorry, I say.
That time I embarrassed myself. The lupus was affecting my cognition, my balance, my whatever it was, I'm sure. Did I just make a mistake? It wasn't me, it was the lupus.
Whether it is buying (or eating) something, engaging in or avoiding an activity, or explaining some shortcoming or discrepancy -- my new ace in the hole is simply on account of the lupus.
I played the lupus card to get A LOT of wonderful help moving (though I'm sure our sweet friends would have helped anyway). Lupus got me out of months of laundry and other chores. Really, I haven't found the bounds yet for exploiting this disease.
But, I plan to test those limits to their full extent in the months and years ahead. I always hear people saying to look on the bright side, to take the good with the bad... that's just what I'm doing. Making lemonade.
---
This post is part of a series on how lupus has affected me.
Click on the links below to read more:
Part 1: Introduction, The horrific mystery disease
Part 2: The bad times
Part 3: How lupus made me a better wife
Part 4: A practice of patience
Part 5: More on the pit
Part 6: Exhaustion
Part 7: Saying no
Part 8: Taming fear and anxiety
My diagnosis
My herbalist and the treatment option I am choosing right now
My recent lifestyle changes
To learn more about lupus, you may visit the Lupus Foundation of America.
Friday, May 23, 2014
Having lupus, Part 8: Taming fear and anxiety
Maybe... to be fearful in this universe is an insult to God.
-Dallas Willard
This is one of the harder things for me to admit. I have always wanted people to see me as strong, as bold. But really, I am very timid. And for years of big talk, I lived my life in fear.
I spent countless hours worrying and fretting. Those hours are lost now with nothing gained.
Who of you by worrying can add a single hour to your life? (Luke 12:25, NIV) Not me. I tried.
I feared failure. I feared losing blessings in my life. I feared illness. I have very poor vision that has continued to slowly deteriorate, and I have spent years gripped by the fear of future blindness.
Some nights I was so consumed with fear and anxiety -- over truly petty things -- I couldn't sleep. It held me back. I let it chain me down. I let it have too much control of my life.
Then I was diagnosed with lupus. The risk of a lot of things I feared increased.
You would think that my anxiety would go into overdrive. But it didn't. I reached a point where there was just too much to worry about. I literally didn't have time to fret about it all. And truly, this disease, it seems, has made time so precious to me.
This disease is unpredictable. I don't know when I'll have a good day or a bad one. I sure don't want to waste good days in fear. And to take the time to worry about everything that could happen to me because of lupus would take all my time.
So, if I hoped to function -- and to live my life as fully as possible -- I had to learn how to overcome my fears. This is still a work in progress. This was not a post I had originally planned for Lupus Awareness Month. I have included it for two reasons: (1) I noticed that fears were rising up in me these last few weeks and I have had to work to manage them. (2) I see others who are gripped by the same fear and anxiety that used to consume me. I hope for everyone the freedom I have found. And if sharing my experience can help, then it is worth it.
I used to think that worrying about something might actually help in some way. That if I could anticipate the bad things, I would be better prepared for them if they happened. I had to make it to a place where I saw very clearly that Jesus is right: I do not gain anything -- not one thing -- through worry or fear.
Now, when I feel those old anxieties start to well up inside of me, I take a deep breath and I pray. I pray often for the Lord to keep me calm and centered in His will and in His presence and His provision for me. And when fear begins to creep in, I stop and pray specifically for that. I tell the Lord bluntly what I am worried about, as trivial as it may be, and I ask Him to take care of it for me.
And with the relief of knowing the King of the world is on it, I then talk myself through my worries. If it is a health concern, I remind myself I am doing everything I can to stay healthy and that I cannot prevent certain things from happening. I just must wait and if an ailment hits me, then I will deal with it. In the meantime, I will enjoy the measure of health I have been given. Sickness, if it comes, doesn't equal failure. And the Lord will see me through whatever is ahead just as He has seen me through to today.
Sometimes, I worry that I have messed something up in my life. Maybe Johnie and I are having a disagreement or misunderstanding. My hours can fill up with worry that I have damaged our relationship or deeply hurt him. In those instances, I pray that the Lord will work out what I intended to do, not what may have actually happened -- or that He will repair any damage I did.
I also have a file saved on my phone, Encouragement, and I open it up and read over the messages I have written there until I feel calm. (A few of the messages include: If I messed up, it will be fixed. If I messed up, it doesn't mean I always will. If I messed up, it doesn't define me as a person...)
Through prayer and intentional focus on specific truths in my life, I am thankful to live much more calmly and peacefully than I ever have before, even amid some of the most raging storms I have faced.
I understand that fear is a multi-headed beast. And we all fight our own unique anxieties in our own specific ways. I don't write this as a twelve-step method to overcoming fear completely. I haven't even done that myself, and what may work for me may not work for you.
But as someone who lived life gripped by fear, I think I may understand a bit about what it is like to live life anxiously. It is not the best way. And whether it is through prayer, meditation on God's truths, or other coping mechanisms, I do believe that Jesus offers this freedom for all of us. If you haven't yet, my hope is that you find yours soon.
Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.
-Josiah 1:9 (ESV)
---
This post is part of a series on how lupus has affected me.
Click on the links below to read more:
Part 1: Introduction, The horrific mystery disease
Part 2: The bad times
Part 3: How lupus made me a better wife
Part 4: A practice of patience
Part 5: More on the pit
Part 6: Exhaustion
Part 7: Saying no
My diagnosis
My herbalist and the treatment option I am choosing right now
My recent lifestyle changes
To learn more about lupus, you may visit the Lupus Foundation of America.
-Dallas Willard
This is one of the harder things for me to admit. I have always wanted people to see me as strong, as bold. But really, I am very timid. And for years of big talk, I lived my life in fear.
I spent countless hours worrying and fretting. Those hours are lost now with nothing gained.
Who of you by worrying can add a single hour to your life? (Luke 12:25, NIV) Not me. I tried.
I feared failure. I feared losing blessings in my life. I feared illness. I have very poor vision that has continued to slowly deteriorate, and I have spent years gripped by the fear of future blindness.
Some nights I was so consumed with fear and anxiety -- over truly petty things -- I couldn't sleep. It held me back. I let it chain me down. I let it have too much control of my life.
Then I was diagnosed with lupus. The risk of a lot of things I feared increased.
You would think that my anxiety would go into overdrive. But it didn't. I reached a point where there was just too much to worry about. I literally didn't have time to fret about it all. And truly, this disease, it seems, has made time so precious to me.
This disease is unpredictable. I don't know when I'll have a good day or a bad one. I sure don't want to waste good days in fear. And to take the time to worry about everything that could happen to me because of lupus would take all my time.
So, if I hoped to function -- and to live my life as fully as possible -- I had to learn how to overcome my fears. This is still a work in progress. This was not a post I had originally planned for Lupus Awareness Month. I have included it for two reasons: (1) I noticed that fears were rising up in me these last few weeks and I have had to work to manage them. (2) I see others who are gripped by the same fear and anxiety that used to consume me. I hope for everyone the freedom I have found. And if sharing my experience can help, then it is worth it.
I used to think that worrying about something might actually help in some way. That if I could anticipate the bad things, I would be better prepared for them if they happened. I had to make it to a place where I saw very clearly that Jesus is right: I do not gain anything -- not one thing -- through worry or fear.
Now, when I feel those old anxieties start to well up inside of me, I take a deep breath and I pray. I pray often for the Lord to keep me calm and centered in His will and in His presence and His provision for me. And when fear begins to creep in, I stop and pray specifically for that. I tell the Lord bluntly what I am worried about, as trivial as it may be, and I ask Him to take care of it for me.
And with the relief of knowing the King of the world is on it, I then talk myself through my worries. If it is a health concern, I remind myself I am doing everything I can to stay healthy and that I cannot prevent certain things from happening. I just must wait and if an ailment hits me, then I will deal with it. In the meantime, I will enjoy the measure of health I have been given. Sickness, if it comes, doesn't equal failure. And the Lord will see me through whatever is ahead just as He has seen me through to today.
Sometimes, I worry that I have messed something up in my life. Maybe Johnie and I are having a disagreement or misunderstanding. My hours can fill up with worry that I have damaged our relationship or deeply hurt him. In those instances, I pray that the Lord will work out what I intended to do, not what may have actually happened -- or that He will repair any damage I did.
I also have a file saved on my phone, Encouragement, and I open it up and read over the messages I have written there until I feel calm. (A few of the messages include: If I messed up, it will be fixed. If I messed up, it doesn't mean I always will. If I messed up, it doesn't define me as a person...)
Through prayer and intentional focus on specific truths in my life, I am thankful to live much more calmly and peacefully than I ever have before, even amid some of the most raging storms I have faced.
I understand that fear is a multi-headed beast. And we all fight our own unique anxieties in our own specific ways. I don't write this as a twelve-step method to overcoming fear completely. I haven't even done that myself, and what may work for me may not work for you.
But as someone who lived life gripped by fear, I think I may understand a bit about what it is like to live life anxiously. It is not the best way. And whether it is through prayer, meditation on God's truths, or other coping mechanisms, I do believe that Jesus offers this freedom for all of us. If you haven't yet, my hope is that you find yours soon.
Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.
-Josiah 1:9 (ESV)
---
This post is part of a series on how lupus has affected me.
Click on the links below to read more:
Part 1: Introduction, The horrific mystery disease
Part 2: The bad times
Part 3: How lupus made me a better wife
Part 4: A practice of patience
Part 5: More on the pit
Part 6: Exhaustion
Part 7: Saying no
My diagnosis
My herbalist and the treatment option I am choosing right now
My recent lifestyle changes
To learn more about lupus, you may visit the Lupus Foundation of America.
Sunday, May 18, 2014
Having lupus, Part 7: Saying no
Haha. No.
-lupus
All of my life I have had trouble saying no. Partly because I really enjoy trying new things and can find a crazy adventure in almost anything. Partly because I don't want to miss one thing. Partly because I hate hearing no. And partly because I express love and feel loved by spending time with people.
Our friends in Kansas called Johnie and me the "yes couple." (Which I take credit for. I get the feeling he didn't get out much pre-marriage.) Watching a movie, hanging out, eating out, camping, boating, community projects... If you asked, we'd be there if we could.
And that's how I've lived my life. I said "yes" to everyone and everything I could. It's how I worked full-time and went to school full-time and dated and still hung out with my friends. Every few months (and almost every spring break, unfortunately), I would crash. I would go to the doctor and be diagnosed with three or four things, and get shots and pills and have to stay in bed for a week.
When the antibiotics were finished, I'd hit life full-speed again.
There were times of transition -- like when I got married and when we moved back to Kentucky -- that I tried to live a more balanced life. But always, inevitably, I'd keep saying yes and my plate would fill up and spill over. Pushing myself to (past) the limit and then spending time on the couch recuperating was the rhythm I was used to.
When I started getting sick in 2012, I thought it was part of this cycle. Except for I didn't really recover. I just kept getting sicker. And more frustrated. I didn't bounce back after a week on the couch, and I wasn't willing to spend longer than that letting life pass me by. Symptoms kept piling on until the spring of 2013 when I reached a new level of low.
I felt emptier than I have ever felt in my life. Saying completely spent doesn't seem to convey just how completely spent I felt. I felt broken, maybe even shattered, and wasn't sure if I'd ever feel unbroken again.
I had to start saying no on a regular basis during those months because I just couldn't say yes.
It was several more frustrating months until I received the lupus diagnosis (that I still have trouble accepting). And while I wasn't ready to receive the lupus label, there was one thing I realized very clearly: Whether we called it lupus or an auto-immune issue, whether it would never get better or go away some day, it was obvious that my body was attacking itself. And it was obvious that the harder I tried to push my body past its limitations, the more it fought back.
My 81-year-old grandfather had just started kidney dialysis treatments at that time. They were painful for him, and I witnessed firsthand how artificial kidneys can change a person's life and schedule. One of the most dangerous forms of lupus attacks the kidneys. It can damage them irreparably. It can shut them down. It can require kidney dialysis or transplant.
It was the thing my rheumatologist -- and shortly thereafter, I, too -- was most concerned about.
Receiving perfectly in-range kidney function test results was such a relief to me. But, I reasoned, if I didn't make some changes in my lifestyle, the lupus that kept attacking system after system when I didn't slow down would eventually turn on my kidneys.
Maybe I overreacted or was being too dramatic, but that realization was sobering. On those days when I was tired, or exhausted, or sick but I still wanted to do this or that thing, I asked myself: Is this worth the risk of kidney failure? I know that pushing myself for a day or for a week won't cause my kidneys to shut down, but I also think there was a good chance that if I didn't slow down my life in general, I could very well be facing very serious health issues in the years ahead.
Turns out I didn't realize how much I loved my kidneys. I'd rather spend more years with them than a lot of the things I used to spend my time with. If I'm just not feeling well, then I (usually) stay home. This one is hard for me. Turning down movies, dinners out and event tickets goes against all my natural tendencies. I usually cry when I'm staying home because I'm sick and missing out on something I really want to do.
I walked away from a job I loved because I didn't feel like I could manage my health and my relationships and still do well at work.
But, on the positive side, having to say no so often when I'm sick makes it easier to say no when I'm not sick. And, I'm learning, prioritizing things to say yes to even when I'm healthy helps me stay healthier longer.
Pre-lupus any movie you asked me to see with you, I'd say yes. Didn't matter if I knew I'd hate it. You would like it and you wanted me with you, so I'd go. Any store, any restaurant you asked me to go to, I'd say yes. Didn't matter how I felt about them. Now, if the movie doesn't look interesting, or the store isn't appealing, or the restaurant isn't what I'm craving, I'll just say no. Especially if I finally got the house clean, still feel good, and am just getting ready to curl up with a book. It's just not worth wasting my (now precious) energy on something I don't really want to do.
My friends have been so sweet and supportive through this rough and crazy last year. I had a friend call a few months ago and ask me to go out. I was in my pajamas and dinner was already made. Pre-lupus I would have thrown on jeans and put the food in the fridge. I actually felt good and wanted to see this friend. But I was craving what I had cooked, not what she was suggesting. And I was looking forward to a quiet evening at home. And I already had a busy day planned the next day. So I said no.
I've said no to her before, and she knows a little pushing is all it takes for me to cave. This time, I still said no. And expected her to push a little more. "Are you not feeling well? Is it the lupus?" she asked.
I guess I could have said yes. I almost did. Technically, it was the lupus. "No," I said. "I actually feel really good today. I just don't want to get out and I'm hoping if I don't push it tonight I'll still feel good tomorrow."
With that piece of information, she continued to push guilt-free, and I continued to say no. I didn't go out that night, and I haven't done a lot of things I otherwise would have. And while I hate having to say no as much as I do, I love the freedom I've found to say no to good things so I can say yes to even better things.
---
This post is part of a series on how lupus has affected me.
Click on the links below to read more:
Part 1: Introduction, The horrific mystery disease
Part 2: The bad times
Part 3: How lupus made me a better wife
Part 4: A practice of patience
Part 5: More on the pit
Part 6: Exhaustion
My diagnosis
My herbalist and the treatment option I am choosing right now
My recent lifestyle changes
To learn more about lupus, you may visit the Lupus Foundation of America.
-lupus
All of my life I have had trouble saying no. Partly because I really enjoy trying new things and can find a crazy adventure in almost anything. Partly because I don't want to miss one thing. Partly because I hate hearing no. And partly because I express love and feel loved by spending time with people.
Our friends in Kansas called Johnie and me the "yes couple." (Which I take credit for. I get the feeling he didn't get out much pre-marriage.) Watching a movie, hanging out, eating out, camping, boating, community projects... If you asked, we'd be there if we could.
And that's how I've lived my life. I said "yes" to everyone and everything I could. It's how I worked full-time and went to school full-time and dated and still hung out with my friends. Every few months (and almost every spring break, unfortunately), I would crash. I would go to the doctor and be diagnosed with three or four things, and get shots and pills and have to stay in bed for a week.
When the antibiotics were finished, I'd hit life full-speed again.
There were times of transition -- like when I got married and when we moved back to Kentucky -- that I tried to live a more balanced life. But always, inevitably, I'd keep saying yes and my plate would fill up and spill over. Pushing myself to (past) the limit and then spending time on the couch recuperating was the rhythm I was used to.
When I started getting sick in 2012, I thought it was part of this cycle. Except for I didn't really recover. I just kept getting sicker. And more frustrated. I didn't bounce back after a week on the couch, and I wasn't willing to spend longer than that letting life pass me by. Symptoms kept piling on until the spring of 2013 when I reached a new level of low.
I felt emptier than I have ever felt in my life. Saying completely spent doesn't seem to convey just how completely spent I felt. I felt broken, maybe even shattered, and wasn't sure if I'd ever feel unbroken again.
I had to start saying no on a regular basis during those months because I just couldn't say yes.
It was several more frustrating months until I received the lupus diagnosis (that I still have trouble accepting). And while I wasn't ready to receive the lupus label, there was one thing I realized very clearly: Whether we called it lupus or an auto-immune issue, whether it would never get better or go away some day, it was obvious that my body was attacking itself. And it was obvious that the harder I tried to push my body past its limitations, the more it fought back.
My 81-year-old grandfather had just started kidney dialysis treatments at that time. They were painful for him, and I witnessed firsthand how artificial kidneys can change a person's life and schedule. One of the most dangerous forms of lupus attacks the kidneys. It can damage them irreparably. It can shut them down. It can require kidney dialysis or transplant.
It was the thing my rheumatologist -- and shortly thereafter, I, too -- was most concerned about.
Receiving perfectly in-range kidney function test results was such a relief to me. But, I reasoned, if I didn't make some changes in my lifestyle, the lupus that kept attacking system after system when I didn't slow down would eventually turn on my kidneys.
Maybe I overreacted or was being too dramatic, but that realization was sobering. On those days when I was tired, or exhausted, or sick but I still wanted to do this or that thing, I asked myself: Is this worth the risk of kidney failure? I know that pushing myself for a day or for a week won't cause my kidneys to shut down, but I also think there was a good chance that if I didn't slow down my life in general, I could very well be facing very serious health issues in the years ahead.
Turns out I didn't realize how much I loved my kidneys. I'd rather spend more years with them than a lot of the things I used to spend my time with. If I'm just not feeling well, then I (usually) stay home. This one is hard for me. Turning down movies, dinners out and event tickets goes against all my natural tendencies. I usually cry when I'm staying home because I'm sick and missing out on something I really want to do.
I walked away from a job I loved because I didn't feel like I could manage my health and my relationships and still do well at work.
But, on the positive side, having to say no so often when I'm sick makes it easier to say no when I'm not sick. And, I'm learning, prioritizing things to say yes to even when I'm healthy helps me stay healthier longer.
Pre-lupus any movie you asked me to see with you, I'd say yes. Didn't matter if I knew I'd hate it. You would like it and you wanted me with you, so I'd go. Any store, any restaurant you asked me to go to, I'd say yes. Didn't matter how I felt about them. Now, if the movie doesn't look interesting, or the store isn't appealing, or the restaurant isn't what I'm craving, I'll just say no. Especially if I finally got the house clean, still feel good, and am just getting ready to curl up with a book. It's just not worth wasting my (now precious) energy on something I don't really want to do.
My friends have been so sweet and supportive through this rough and crazy last year. I had a friend call a few months ago and ask me to go out. I was in my pajamas and dinner was already made. Pre-lupus I would have thrown on jeans and put the food in the fridge. I actually felt good and wanted to see this friend. But I was craving what I had cooked, not what she was suggesting. And I was looking forward to a quiet evening at home. And I already had a busy day planned the next day. So I said no.
I've said no to her before, and she knows a little pushing is all it takes for me to cave. This time, I still said no. And expected her to push a little more. "Are you not feeling well? Is it the lupus?" she asked.
I guess I could have said yes. I almost did. Technically, it was the lupus. "No," I said. "I actually feel really good today. I just don't want to get out and I'm hoping if I don't push it tonight I'll still feel good tomorrow."
With that piece of information, she continued to push guilt-free, and I continued to say no. I didn't go out that night, and I haven't done a lot of things I otherwise would have. And while I hate having to say no as much as I do, I love the freedom I've found to say no to good things so I can say yes to even better things.
---
This post is part of a series on how lupus has affected me.
Click on the links below to read more:
Part 1: Introduction, The horrific mystery disease
Part 2: The bad times
Part 3: How lupus made me a better wife
Part 4: A practice of patience
Part 5: More on the pit
Part 6: Exhaustion
My diagnosis
My herbalist and the treatment option I am choosing right now
My recent lifestyle changes
To learn more about lupus, you may visit the Lupus Foundation of America.
Wednesday, May 14, 2014
Having lupus, Part 6: Exhaustion
It's just a constant battle: Me against my body. My passions and my dreams and what I want to do with my life, against what I'm physically able to do.
-Austin Carlile
Note: This was a free-write I did back in the winter, obviously born of frustration. (I hope you laugh at that word later.) Sometimes the sound of clacking keys is therapeutic, no matter the result. I thought it would be appropriate for this series of posts to share now these uncensored feelings I had "in the moment."
It is one of those days. I am exhausted. I am white-knuckling the day with the goal of remaining upright until it is close to an acceptable bed time.
This makes no sense to me. I slept a full eight hours last night. A full eight hours. Shouldn't my energy level coincide with my sleeping pattern? I have been tired, exhausted before. I always thought it was sleep. I have felt better on four hours than I feel today.
I guess this is lupus? Whatever it is, it is so frustratingly frustrating. Yes, that's how frustrating it is. Except more. I could come up with much better words than that, but I am exhausted. And frustratingly frustrating is what I can muster. Frustrating isn't strong enough and I want to say frustratingly some other word that I just can't pull from my fog-filled brain. So frustratingly frustrating it is. If I fight any harder for another word my computer may end up in more than one piece on the other side of the room. Or house. Or yard. It's hard to know for sure.
I feel confined by invisible chains. I feel compelled to write but I am consumed by a magnetic pull toward a vegetative state. And fighting it seems futile.
So this is what I can write. I tried. All. Day. Long. To string together coherent thoughts on beauty and makeup and DermaBlend Camo Confessions and Dove Real Beauty sketches. But there was not enough energy when every word was a fight. To insert links and look up data and embed videos is too much work when balancing my head on top of my shoulders feels like a chore. With the sun gone down, I must surrender those thoughts to another day.
Nothing to show for this one.
If I am to write today then this is all I can seem to explain. And even this not very well.
To feel this way for a day is not so bad. But when this exhaustion stretches out and deepens, when the body is completely drained, it begins to drain the spirit too. This is where I learn patience. As I wait for energy to return. I wait and I wait and that is all I can do.
It has been with me too long this time, exhaustion. I'm ready for a break. Can I sit it down for a while, I ask. What if I agree to come back and pick it up later? Just a break if full-fledged relief isn't possible. What good is this anyway? Really? Am I not better when I am better?
And still I just wait.
Relief will come. It always does. I'm hoping for tomorrow. And I hope that tomorrow I'm not hoping for the next day.
Note: Infuriating. That was the word.
---
This post is part of a series on how lupus has affected me.
Click on the links below to read more:
Part 1: Introduction, The horrific mystery disease
Part 2: The bad times
Part 3: How lupus made me a better wife
Part 4: A practice of patience
Part 5: More on the pit
Part 7: Saying no
My diagnosis
My herbalist and the treatment option I am choosing right now
My recent lifestyle changes
To learn more about lupus, you may visit the Lupus Foundation of America.
-Austin Carlile
Note: This was a free-write I did back in the winter, obviously born of frustration. (I hope you laugh at that word later.) Sometimes the sound of clacking keys is therapeutic, no matter the result. I thought it would be appropriate for this series of posts to share now these uncensored feelings I had "in the moment."
It is one of those days. I am exhausted. I am white-knuckling the day with the goal of remaining upright until it is close to an acceptable bed time.
This makes no sense to me. I slept a full eight hours last night. A full eight hours. Shouldn't my energy level coincide with my sleeping pattern? I have been tired, exhausted before. I always thought it was sleep. I have felt better on four hours than I feel today.
I guess this is lupus? Whatever it is, it is so frustratingly frustrating. Yes, that's how frustrating it is. Except more. I could come up with much better words than that, but I am exhausted. And frustratingly frustrating is what I can muster. Frustrating isn't strong enough and I want to say frustratingly some other word that I just can't pull from my fog-filled brain. So frustratingly frustrating it is. If I fight any harder for another word my computer may end up in more than one piece on the other side of the room. Or house. Or yard. It's hard to know for sure.
I feel confined by invisible chains. I feel compelled to write but I am consumed by a magnetic pull toward a vegetative state. And fighting it seems futile.
So this is what I can write. I tried. All. Day. Long. To string together coherent thoughts on beauty and makeup and DermaBlend Camo Confessions and Dove Real Beauty sketches. But there was not enough energy when every word was a fight. To insert links and look up data and embed videos is too much work when balancing my head on top of my shoulders feels like a chore. With the sun gone down, I must surrender those thoughts to another day.
Nothing to show for this one.
If I am to write today then this is all I can seem to explain. And even this not very well.
To feel this way for a day is not so bad. But when this exhaustion stretches out and deepens, when the body is completely drained, it begins to drain the spirit too. This is where I learn patience. As I wait for energy to return. I wait and I wait and that is all I can do.
It has been with me too long this time, exhaustion. I'm ready for a break. Can I sit it down for a while, I ask. What if I agree to come back and pick it up later? Just a break if full-fledged relief isn't possible. What good is this anyway? Really? Am I not better when I am better?
And still I just wait.
Relief will come. It always does. I'm hoping for tomorrow. And I hope that tomorrow I'm not hoping for the next day.
Note: Infuriating. That was the word.
---
This post is part of a series on how lupus has affected me.
Click on the links below to read more:
Part 1: Introduction, The horrific mystery disease
Part 2: The bad times
Part 3: How lupus made me a better wife
Part 4: A practice of patience
Part 5: More on the pit
Part 7: Saying no
My diagnosis
My herbalist and the treatment option I am choosing right now
My recent lifestyle changes
To learn more about lupus, you may visit the Lupus Foundation of America.
Monday, May 12, 2014
Having lupus, Part 5: More on the pit
The sick soon come to understand they live in a different world from that of the well and that the two cannot communicate.
-Jessamyn West
Note: As I have said before, I do feel like I live in a different world now than I did before I got sick. And it is hard to explain. However, we each live in our own worlds and every experience is difficult to convey to those who have no similar frame of reference. One of my goals in life is to break down communication barriers, and with this series of posts I hope to help open up lines of communication between "the sick" and "the well."
When all my lupus symptoms reached their apex in the summer of 2013, I thought I might seriously have some sort of mental illness. I was seeing multiple doctors and their diagnoses didn't seem to match my level of illness. I just felt sick and tired all the time and it never got better. And there was no explanation.
I kept thinking after I reached this milestone or that milestone at work or at home, I would feel better. When I was sick during winter, I thought I would feel better come spring. When I was sick at work, I thought I would feel better when things slowed down. I thought I'd feel better on vacation. On trips, I thought I'd feel better when I got back home.
But I kept feeling worse. Random symptom on top of random symptom kept piling on.
I had been trying to lose weight unsuccessfully for several months. I thought I just wasn't trying hard enough. So I took on a fundraising challenge in May that would require that I walk 10,000 steps a day. That would hold me accountable and then I would lose weight. One month and more than 300,000 steps later the scale hadn't moved.
Maybe I needed to watch my diet more carefully. I ate A LOT of salads in June and drank A LOT of water. And counted calories every day. Another month and another 300,000 steps and the scale STILL hadn't moved. Not one pound.
That first day I walked those steps, my legs ached. They continued to ache the next day and the next one. I was more out of shape than I thought I was when I took on the challenge.
I thought my legs would adjust after the first week. But they didn't. Surely they'd feel better after two weeks. The more steps I walked those two months, the more my legs hurt. My muscles ached. I was exhausted. And I was only walking.
I thought I must surely be the biggest wimp on the face of the planet. I felt like a big, fat loser. Literally.
I began to wonder if I might have an anxiety disorder. If I might be making my symptoms up.
I was an emotional wreck during that time and I wondered if I might have depression.
There were days when I did not want to get out of bed. When I wanted to hide away from life and everyone I know. Days when every single little thing felt like an insurmountable task. Even taking a shower. Even reading a book. Even eating. Food is one of my favorite things and when I didn't even care about meals anymore, I knew something was wrong.
I scheduled an appointment with a counselor, but as I talked with my friends during this time they encouraged me to take ALL my symptoms to a general practitioner and ask (again) for some lab work.
I wrote them all out. Months of symptoms and doctors, and then read them to the physician at my appointment. He listened and then said, "You're depressed." No need for lab work.
I acknowledged that might be a possibility and even brought up that I already had an appointment with a counselor, but asked (again) for lab work. (He finally did agree to a few tests -- one that eventually led to my diagnosis.) I had been dealing with physical symptoms for more than a year before I noticed the mental symptoms I was struggling with at that time. It didn't make sense to me that the physical symptoms of depression would manifest themselves months ahead of the mental symptoms.
I left that appointment wondering if I might have a mental illness even more serious (or in addition to) depression. I began quizzing my friends and family and asking if they noticed anything questionable. And then I wondered if they were not being truthful in their answers because it was obvious that I was unstable.
While my diagnosis turned out to be lupus, my brushes with depression and anxiety have made me more sympathetic to friends and family who battle those things on a regular basis.
And as I am learning to manage my lupus symptoms, I have found my mental health to be one indicator of whether or not I'm in the pit.
Like I said before, I have days -- though not nearly as many as I would like -- when I feel completely normal. For me, this is being on solid ground. And it really feels -- physically -- like being on solid ground. When lupus is attacking me, I seriously don't know if I can hold my body together. Sitting up and walking feel like acts of faith. I'm never sure when I might just topple over. When I don't have to use energy to sit up or to walk, when my legs feel solid beneath me and my arms feel capable and I have energy all day long, those are my best days. That's when I remember what it was like not to have lupus. My solid ground days.
Most days for me are not quite this good. They're not horrible, they're not intolerable, but they're not great either. Shaky ground. It's kind of like going on vacation. And boarding your flight and getting seated in front of that obnoxious guy whose volume knob got stuck on high. And he decides to give his seat mate all the details of his hernia operation. You're still glad for the break a vacation brings (in this case a break from the pit), but you just wish that guy would shut up or that you could get off the plane already.
The shift between shaky ground and falling in the hole happens when the physical symptoms intensify and then mentally I start to break. Shaky ground: My eye waters and I wipe at tears all day long and go on. Annoying, but no big deal. I feel like I'm going to throw up and I sip some water. Headache, I take medicine. Some dizziness, and I make no sudden movements. I feel tired and I take a nap, or I ask Johnie to do the dishes, or I put off paying the bills. All very manageable.
But when my head is hurting and I'm feeling dizzy and queasy and I have some random pain in my leg and I'm just so exhausted and I think about that dinner out at my favorite restaurant that we have planned and it just feels like that will be the hardest chore to complete. That's when I know. I'm in the hole. And that thing I love to do only seems like it will be miserable because I'm looking up at it from down deep in the lupus pit.
That has become my barometer.
When that happens I throw my hands up in surrender. I go to bed and I wait for however long it takes to be lifted back out of the hole again. For that morning when I wake up and feel rested and want to get out of bed. And I stand up and my legs feel stable. And I'm hungry and I know just the thing to eat. And three hours later I still have the energy to do whatever I have to do that day. That's when I know I've been lifted out of the pit and am back on solid ground.
---
This post is part of a series on how lupus has affected me.
Click on the links below to read more:
Part 1: Introduction, The horrific mystery disease
Part 2: The bad times
Part 3: How lupus made me a better wife
Part 4: A practice of patience
Part 6: Exhaustion
Part 7: Saying no
My diagnosis
My herbalist and the treatment option I am choosing right now
My recent lifestyle changes
To learn more about lupus, you may visit the Lupus Foundation of America.
-Jessamyn West
Note: As I have said before, I do feel like I live in a different world now than I did before I got sick. And it is hard to explain. However, we each live in our own worlds and every experience is difficult to convey to those who have no similar frame of reference. One of my goals in life is to break down communication barriers, and with this series of posts I hope to help open up lines of communication between "the sick" and "the well."
When all my lupus symptoms reached their apex in the summer of 2013, I thought I might seriously have some sort of mental illness. I was seeing multiple doctors and their diagnoses didn't seem to match my level of illness. I just felt sick and tired all the time and it never got better. And there was no explanation.
I kept thinking after I reached this milestone or that milestone at work or at home, I would feel better. When I was sick during winter, I thought I would feel better come spring. When I was sick at work, I thought I would feel better when things slowed down. I thought I'd feel better on vacation. On trips, I thought I'd feel better when I got back home.
But I kept feeling worse. Random symptom on top of random symptom kept piling on.
I had been trying to lose weight unsuccessfully for several months. I thought I just wasn't trying hard enough. So I took on a fundraising challenge in May that would require that I walk 10,000 steps a day. That would hold me accountable and then I would lose weight. One month and more than 300,000 steps later the scale hadn't moved.
Maybe I needed to watch my diet more carefully. I ate A LOT of salads in June and drank A LOT of water. And counted calories every day. Another month and another 300,000 steps and the scale STILL hadn't moved. Not one pound.
That first day I walked those steps, my legs ached. They continued to ache the next day and the next one. I was more out of shape than I thought I was when I took on the challenge.
I thought my legs would adjust after the first week. But they didn't. Surely they'd feel better after two weeks. The more steps I walked those two months, the more my legs hurt. My muscles ached. I was exhausted. And I was only walking.
I thought I must surely be the biggest wimp on the face of the planet. I felt like a big, fat loser. Literally.
I began to wonder if I might have an anxiety disorder. If I might be making my symptoms up.
I was an emotional wreck during that time and I wondered if I might have depression.
There were days when I did not want to get out of bed. When I wanted to hide away from life and everyone I know. Days when every single little thing felt like an insurmountable task. Even taking a shower. Even reading a book. Even eating. Food is one of my favorite things and when I didn't even care about meals anymore, I knew something was wrong.
I scheduled an appointment with a counselor, but as I talked with my friends during this time they encouraged me to take ALL my symptoms to a general practitioner and ask (again) for some lab work.
I wrote them all out. Months of symptoms and doctors, and then read them to the physician at my appointment. He listened and then said, "You're depressed." No need for lab work.
I acknowledged that might be a possibility and even brought up that I already had an appointment with a counselor, but asked (again) for lab work. (He finally did agree to a few tests -- one that eventually led to my diagnosis.) I had been dealing with physical symptoms for more than a year before I noticed the mental symptoms I was struggling with at that time. It didn't make sense to me that the physical symptoms of depression would manifest themselves months ahead of the mental symptoms.
I left that appointment wondering if I might have a mental illness even more serious (or in addition to) depression. I began quizzing my friends and family and asking if they noticed anything questionable. And then I wondered if they were not being truthful in their answers because it was obvious that I was unstable.
While my diagnosis turned out to be lupus, my brushes with depression and anxiety have made me more sympathetic to friends and family who battle those things on a regular basis.
And as I am learning to manage my lupus symptoms, I have found my mental health to be one indicator of whether or not I'm in the pit.
Like I said before, I have days -- though not nearly as many as I would like -- when I feel completely normal. For me, this is being on solid ground. And it really feels -- physically -- like being on solid ground. When lupus is attacking me, I seriously don't know if I can hold my body together. Sitting up and walking feel like acts of faith. I'm never sure when I might just topple over. When I don't have to use energy to sit up or to walk, when my legs feel solid beneath me and my arms feel capable and I have energy all day long, those are my best days. That's when I remember what it was like not to have lupus. My solid ground days.
Most days for me are not quite this good. They're not horrible, they're not intolerable, but they're not great either. Shaky ground. It's kind of like going on vacation. And boarding your flight and getting seated in front of that obnoxious guy whose volume knob got stuck on high. And he decides to give his seat mate all the details of his hernia operation. You're still glad for the break a vacation brings (in this case a break from the pit), but you just wish that guy would shut up or that you could get off the plane already.
The shift between shaky ground and falling in the hole happens when the physical symptoms intensify and then mentally I start to break. Shaky ground: My eye waters and I wipe at tears all day long and go on. Annoying, but no big deal. I feel like I'm going to throw up and I sip some water. Headache, I take medicine. Some dizziness, and I make no sudden movements. I feel tired and I take a nap, or I ask Johnie to do the dishes, or I put off paying the bills. All very manageable.
But when my head is hurting and I'm feeling dizzy and queasy and I have some random pain in my leg and I'm just so exhausted and I think about that dinner out at my favorite restaurant that we have planned and it just feels like that will be the hardest chore to complete. That's when I know. I'm in the hole. And that thing I love to do only seems like it will be miserable because I'm looking up at it from down deep in the lupus pit.
That has become my barometer.
When that happens I throw my hands up in surrender. I go to bed and I wait for however long it takes to be lifted back out of the hole again. For that morning when I wake up and feel rested and want to get out of bed. And I stand up and my legs feel stable. And I'm hungry and I know just the thing to eat. And three hours later I still have the energy to do whatever I have to do that day. That's when I know I've been lifted out of the pit and am back on solid ground.
---
This post is part of a series on how lupus has affected me.
Click on the links below to read more:
Part 1: Introduction, The horrific mystery disease
Part 2: The bad times
Part 3: How lupus made me a better wife
Part 4: A practice of patience
Part 6: Exhaustion
Part 7: Saying no
My diagnosis
My herbalist and the treatment option I am choosing right now
My recent lifestyle changes
To learn more about lupus, you may visit the Lupus Foundation of America.
Friday, May 9, 2014
Having lupus, Part 4: A practice of patience
How poor are they who have not patience. What wound did ever heal but by degrees.
-William Shakespeare
When I was five years old my dad bought me a guitar. Music is in my genes and I still remember the excitement I felt when he put it in my hands. I idolized him and this was one more step in my quest to be just like him. He showed me where to put my fingers. How to strum. I tried it, but it didn't sound the same as when he did it. I couldn't even make it sound like a song.
Less than an hour after I picked up the guitar, I set it back down. For good.
My mom always said that if I didn't learn something in five minutes I never would. I didn't have the patience. It was a trait that followed me into adulthood.
Until the lupus diagnosis.
I couldn't set lupus down like I had the guitar. I was sick and I stayed sick and I had to learn to deal with it. Getting frustrated didn't help. Ignoring symptoms and stopping treatments only made things worse. I learned the first year the symptoms piled on that I would have to stick with doctors and stick with treatments for weeks and months to see any result at all. And even the slightest bobble (or no bobble at all) in routine, could send things downward again.
When I got sick, I had no choice but to wait it out. Before I even knew I had it, lupus was teaching me to wait.
I had to wait just for the diagnosis. And it still felt like too soon to hear that news.
I had to wait for relief from symptoms. I was sick for months, and for some of those months I just kept getting sicker. No explanation, no answers. I began to wonder if things would ever get any better, if I would ever get any help. Then I did. Sweet relief came finally.
But it didn't stay. And I had to wait again.
I have heard lupus described in different ways, like by spoons. For me, it feels like falling in a hole. Some days, I'm on solid ground. These are the days when I feel great. I feel normal. I feel like I did pre-lupus. Some days, the ground might be a little shaky, a little muddy, a little slippery. I can still function like normal (or pretty close to it), but it takes more effort. I feel like I have to step lightly, proceed cautiously... lest I fall into the hole. Because when I get really sick, that's what it feels like. Like I've fallen in a big, deep pit.
Before I knew the hole was called lupus, before I knew there was nothing I did to get into the hole and nothing I could do to get out of it, I would fight and scratch and try to claw my way back up. I would wear myself out down in the hole and have nothing to show for it but bloody knuckles and muddy jeans. And when I finally did get lifted out, I was too tired to even enjoy being back on solid ground.
Now I know when I fall in the lupus pit I just have to wait to be lifted out again. I know I might as well spend as much time sleeping as I can down in the hole so I'll have plenty of energy on that day when I wake up back on the ground again.
Well, I say that like it's a rule. Sometimes -- even now -- when I fall in the pit I pretend like I'm not in it at all and just go about living my life like I would on the shaky ground. (I like to call this digging the hole deeper. It has much the same results as trying to claw my way out.)
The point is, I realized that as difficult as it is for me to wait, it's the most productive thing I can do down in that pit. And I hate --H-A-T-E HATE -- being down there, so I'll do anything I can to get out as fast as possible. Even if it's something as grueling and horrific as waiting.
One side effect of waiting down in the lupus pit is achieving a higher tolerance level for non-lupus waiting. Once you've waited and waited... AND WAITED... to feel like getting out of bed then waiting for a stop light, or a vacation, or dinner, or an answer (from people or from prayer) doesn't seem nearly as taxing.
I've learned that staying calm and waiting on whatever thing isn't happening as quickly as I would like it to is the best thing for my disease. I have also discovered something else: It turns out to be the best thing for my life, too.
I look back on all those years that I got worked up over this little thing or that little thing and realize now that it wasn't worth it. Even when people told me then that it wasn't worth it, I didn't believe them. I believe them now.
This goes against every natural tendency I possess: To wait, to go with the flow, to remain calm when things aren't working out. It has taken work to achieve a sense of calm, of peacefulness in the midst of chaos and longing. And sometimes I still fail. Sometimes I still fail miserably.
I am ashamed to say that pre-lupus I had resigned myself to impatience. Patience was a virtue I thought I would never have. It still isn't at the virtue level. But I am making progress.
It just took something as stubborn and unrelenting as lupus to finally teach me. I went toe-to-toe with my illness for months. It won. Like, major smackdown, who's-your-daddy, won.
So now I am learning to be more respectful of my new limitations. And for all the things that it feels like lupus has taken away from me, I am thankful for at least this one thing it has given me.
I hope that one day the lupus goes, but I'll be happy to keep this new-found patience as a souvenir.
---
This post is part of a series on how lupus has affected me.
Click on the links below to read more:
Part 1: Introduction, The horrific mystery disease
Part 2: The bad times
Part 3: How lupus made me a better wife
Part 5: More on the pit
Part 6: Exhaustion
Part 7: Saying no
My diagnosis
My herbalist and the treatment option I am choosing right now
My recent lifestyle changes
To learn more about lupus, you may visit the Lupus Foundation of America.
-William Shakespeare
When I was five years old my dad bought me a guitar. Music is in my genes and I still remember the excitement I felt when he put it in my hands. I idolized him and this was one more step in my quest to be just like him. He showed me where to put my fingers. How to strum. I tried it, but it didn't sound the same as when he did it. I couldn't even make it sound like a song.Less than an hour after I picked up the guitar, I set it back down. For good.
My mom always said that if I didn't learn something in five minutes I never would. I didn't have the patience. It was a trait that followed me into adulthood.
Until the lupus diagnosis.
I couldn't set lupus down like I had the guitar. I was sick and I stayed sick and I had to learn to deal with it. Getting frustrated didn't help. Ignoring symptoms and stopping treatments only made things worse. I learned the first year the symptoms piled on that I would have to stick with doctors and stick with treatments for weeks and months to see any result at all. And even the slightest bobble (or no bobble at all) in routine, could send things downward again.
When I got sick, I had no choice but to wait it out. Before I even knew I had it, lupus was teaching me to wait.
I had to wait just for the diagnosis. And it still felt like too soon to hear that news.
I had to wait for relief from symptoms. I was sick for months, and for some of those months I just kept getting sicker. No explanation, no answers. I began to wonder if things would ever get any better, if I would ever get any help. Then I did. Sweet relief came finally.
But it didn't stay. And I had to wait again.
I have heard lupus described in different ways, like by spoons. For me, it feels like falling in a hole. Some days, I'm on solid ground. These are the days when I feel great. I feel normal. I feel like I did pre-lupus. Some days, the ground might be a little shaky, a little muddy, a little slippery. I can still function like normal (or pretty close to it), but it takes more effort. I feel like I have to step lightly, proceed cautiously... lest I fall into the hole. Because when I get really sick, that's what it feels like. Like I've fallen in a big, deep pit.
Before I knew the hole was called lupus, before I knew there was nothing I did to get into the hole and nothing I could do to get out of it, I would fight and scratch and try to claw my way back up. I would wear myself out down in the hole and have nothing to show for it but bloody knuckles and muddy jeans. And when I finally did get lifted out, I was too tired to even enjoy being back on solid ground.
Now I know when I fall in the lupus pit I just have to wait to be lifted out again. I know I might as well spend as much time sleeping as I can down in the hole so I'll have plenty of energy on that day when I wake up back on the ground again.
Well, I say that like it's a rule. Sometimes -- even now -- when I fall in the pit I pretend like I'm not in it at all and just go about living my life like I would on the shaky ground. (I like to call this digging the hole deeper. It has much the same results as trying to claw my way out.)
The point is, I realized that as difficult as it is for me to wait, it's the most productive thing I can do down in that pit. And I hate --H-A-T-E HATE -- being down there, so I'll do anything I can to get out as fast as possible. Even if it's something as grueling and horrific as waiting.
One side effect of waiting down in the lupus pit is achieving a higher tolerance level for non-lupus waiting. Once you've waited and waited... AND WAITED... to feel like getting out of bed then waiting for a stop light, or a vacation, or dinner, or an answer (from people or from prayer) doesn't seem nearly as taxing.
I've learned that staying calm and waiting on whatever thing isn't happening as quickly as I would like it to is the best thing for my disease. I have also discovered something else: It turns out to be the best thing for my life, too.
I look back on all those years that I got worked up over this little thing or that little thing and realize now that it wasn't worth it. Even when people told me then that it wasn't worth it, I didn't believe them. I believe them now.
This goes against every natural tendency I possess: To wait, to go with the flow, to remain calm when things aren't working out. It has taken work to achieve a sense of calm, of peacefulness in the midst of chaos and longing. And sometimes I still fail. Sometimes I still fail miserably.
I am ashamed to say that pre-lupus I had resigned myself to impatience. Patience was a virtue I thought I would never have. It still isn't at the virtue level. But I am making progress.
It just took something as stubborn and unrelenting as lupus to finally teach me. I went toe-to-toe with my illness for months. It won. Like, major smackdown, who's-your-daddy, won.
So now I am learning to be more respectful of my new limitations. And for all the things that it feels like lupus has taken away from me, I am thankful for at least this one thing it has given me.
I hope that one day the lupus goes, but I'll be happy to keep this new-found patience as a souvenir.
---
This post is part of a series on how lupus has affected me.
Click on the links below to read more:
Part 1: Introduction, The horrific mystery disease
Part 2: The bad times
Part 3: How lupus made me a better wife
Part 5: More on the pit
Part 6: Exhaustion
Part 7: Saying no
My diagnosis
My herbalist and the treatment option I am choosing right now
My recent lifestyle changes
To learn more about lupus, you may visit the Lupus Foundation of America.
Tuesday, May 6, 2014
Having lupus, Part 3: How lupus made me a better wife
I've got your back, Rose.
-Johnie
I have commitment issues.
I had a moment of panic on my wedding day. I was afraid maybe Johnie wasn't the one. I was afraid I didn't know him well enough. I was afraid he was just putting on a show, and would get me to Kansas and then make my life miserable.
The only way I could make it down the aisle that day was to repeat these words in my mind: "You can get a divorce. It's okay. If it doesn't work out, you can leave. You don't have to stay."
Not the most romantic or reassuring thing for my husband to know.
I mean, I believed in the sanctity of marriage in theory. But when I was being completely honest, I told Johnie I didn't have enough confidence in myself to be sure I'd stick around if things got bad.
When things get hard or uncomfortable, I look for a way out. Why would I be any different in my marriage? And it doesn't help matters that I tend to be a loner and independent to a fault.
Johnie clearly took note of my warnings in one of his classic attempts to be romantic a few years after our vows: "Amy, I really want to make you happy. Not only because I love you, but because I really don't want to have to find another wife."
At least he realized I was serious.
Of course I wasn't wanting to stay in a marriage that involved abuse or cheating or a husband who just didn't respect or value me appropriately. But I also wondered whether or not I'd be able to stick by Johnie if marriage became hard in a way that wasn't necessarily his fault. Like if he got sick or injured or lost his job.
I just saw wives who labored through husbands' paralysis, or terminal illness, or dementia. I wondered if I would have their strength. I was afraid I wouldn't.
Johnie has made my life better in so many ways. I'll be honest: That's a big reason why I chose to marry, and him specifically. (It didn't hurt that he is also H.O.T.)
What if he was no longer able to provide financially? What if I had to care for all his needs around the clock: feed him, bathe him, change him? What if we could no longer travel together, or go out together, or laugh together? What if he lost his personality or his memory? What if marriage became more of a burden than a blessing, would I actually stay? I didn't know.
But for all of my doubts, Johnie never had any. As reluctant as I was to pledge 'til death do us part, Johnie was sure it was me and only me, no matter what. His loyalty and devotion was deep and sure from even before he put that ring on my finger.
And in all my worries about him one day becoming a burden to me, I never really gave much thought to me becoming a burden to him.
That changed when I faced lupus.
I was no longer the wife he married. My healthcare cost more, while my earning potential decreased. The likelihood that I would have more physical daily needs he would have to meet skyrocketed, while my ability to keep up my part of our household chores plummeted. If I can get pregnant with his child (because we have never "tried" we aren't sure whether or not lupus has affected my fertility), the pregnancy would automatically be high risk. And any children we have through biology or foster care or adoption would require more care from him on my unpredictable down days. My weight fluctuates uncontrollably. My hair falls out and breaks off. My face has big, ugly spots on it 90% of the time. There are even some days I don't feel like cracking a joke.
And who knows what the future holds for him and me.
Lupus made me less of a partner and more of a liability.
But none of that mattered to Johnie. I apologized for all the things he was losing with my diagnosis. He didn't accept it because he said it wasn't needed. And as we laid in bed that night after we got the news, he held me and wiped away my tears and reassured me.
"You know I'm here for you. I'll do whatever I can for you to help. Just let me know... Whatever it takes. I've got your back, Rose."
It was a weight lifted off my shoulders and I was so thankful. He was so fully devoted to me even when I wasn't to him. And now even when I didn't bring nearly as much to the table, his commitment remained in a way I wasn't sure mine would have.
That changed me.
How much harder my diagnosis would have been if Johnie had treated our marriage the way I always had.
I vowed then to give myself to Johnie with reckless abandon. For my devotion to him to match his to me: unwavering and never-ending. No matter what.
I confessed to Johnie one night shortly after that I hadn't been the wife to him I should have been. That it was wrong of me to withhold my full devotion. And I pledged to him that -- though nearly seven years late -- I was completely committed to him in a way I should have been from the beginning.
I worried it would be too little, too late. But I don't think it was.
I read somewhere that more than half of all marriages end less than five years after a lupus diagnosis. That statistic frightened me at first, but I don't worry about it anymore.
I don't have as much to offer Johnie as I once did, but I offer it fully and freely. And in that way, lupus has made our marriage even stronger, even better, than it already was.
---
This post is part of a series on how lupus has affected me.
Click on the links below to read more:
Part 1: Introduction, The horrific mystery disease
Part 2: The bad times
Part 4: A practice of patience
Part 5: More on the pit
Part 6: Exhaustion
Part 7: Saying no
My diagnosis
My herbalist and the treatment option I am choosing right now
My recent lifestyle changes
To learn more about lupus, you may visit the Lupus Foundation of America.
Sunday, May 4, 2014
Having lupus, Part 2: The bad times
I have found that one of the more difficult things for me to deal with after my diagnosis has been those people who seem to suggest that my illness isn't a big deal, or that I'm being too dramatic, or that a simple cure would fix me right up. The lupus itself, at times, makes me feel weak, not good enough, defeated. And when people underscore some of those messages (well-intentioned or not), I have surprised even myself at just how strongly I want to slap them. (I have -- at least up to the time of this writing -- been able to resist.)
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| Pictures taken from Chronic Illness Memes |
So, to do justice to myself and all the others out there who struggle with ailments that limit our bodies or our minds in frustrating, seemingly-unbreakable chains, I also want to offer a vulnerable glimpse into the dark, cloudy, stormy side.
I try to be positive and upbeat. I try to think about things optimistically.
But I also want to be honest. While I do spend a lot of time looking on the bright side of having a chronic illness -- there IS a bright side, I think -- it's not all sunshine. And it's easier to talk sunshine than to live it. Let's all acknowledge that up front.
I need to also acknowledge: Receiving the diagnosis of an incurable illness is no easy thing. And coping with ongoing unpredictable sickness gets hard fast.
There are minutes, hours, days of despair. When I lay in bed consumed in a million different ways.
I have been weary. In some moments, hopeless. I have felt like a victim. I have cried angry tears and shouted angry demands. Though more of them have been desperate than mad.
I have pumped clenched fists in the air and stomped my feet. (My husband laughs when I do this, and we have proven -- more than once -- that his amusement doesn't lighten my mood.)
I have worried and fretted and tried to wring anxiety out of my hands as I've wondered what this symptom or that one will mean for me. How bad it will get, how long it will last. What it will lead to.
I have whined and moaned and wept.
I have prayed and begged for relief. Sometimes it came blessedly and gloriously. Sometimes it came much later than I wanted. In some ways it has yet to come at all.
Sometimes my determination for the day -- with brow furrowed -- is just making it back to my bed at night. And anything or anyone who may put up any tiny extra obstacle in my way would face the full wrath I felt at not being well.
There are times when my goals atrophy to one: just make it through.
I have bad times.
But I also still have plenty PLENTY of good times too. And if there's one thing I've learned from the bad times, it's that I should treasure the good times even more.
And so, when I talk about this blessing or that blessing in upcoming posts. When I talk about improvements and advances and being better off in ways, I don't want you to hold up some polished account of a muddy reality and feel less than. This is hard stuff. For anyone. And we all come with our own experiences and our own lenses and our own set of strengths and limitations.
The thing about lupus, and really life in general, is that no one is stronger or weaker. No one is ahead or behind. We all have our burdens to bear and no one but Jesus knows any better way of getting through rough days than the way we manage to get through them.
There's always going to be bad stuff out there. But here's the amazing thing: light trumps darkness, every time.
-Jodi Picoult
---
This post is part of a series on how lupus has affected me.
Click on the links below to read more:
Part 1: Introduction, The horrific mystery disease
Part 3: How lupus made me a better wife
Part 4: A practice of patience
Part 5: More on the pit
Part 6: Exhaustion
Part 7: Saying no
My diagnosis
My herbalist and the treatment option I am choosing right now
My recent lifestyle changes
To learn more about lupus, you may visit the Lupus Foundation of America.
Thursday, May 1, 2014
Having lupus, Part 1: The horrific mystery disease
Do you feel pooped? Do you occasionally get piercing headaches behind your right eye? Do you bore your friends to death by going on and on and on about how much work you have to do? And have you been so rushed and run down that your personal grooming and general appearance have deteriorated to the point where your friends politely avert their eyes when you enter a room? The good news is there are only two possible explanations for these alarming symptoms: You have contracted a horrific mystery disease for which there is no possible cure or, and this is only marginally better, you are one of those people who are simply doing way too much.
- Bradley Trevor Greive, The book for people who do too much
Johnie and I were at a bed and breakfast in Bloomington celebrating seven years of marriage. I wandered down to the library and found on the bookshelf a little hardback entitled The book for people who do too much.
I had planned this particular anniversary celebration with rest and relaxation in mind. I had felt stretched thin for months. I craved down time. Obviously, the book caught my attention.
I could tell it was going to be filled with wit and sarcasm, but when I came across the quote above in the early pages, it took me a few minutes to muster any laughter. I do have all those symptoms -- and more. But my problem is the first one. In a very real sense. Lupus is often called the cruel mystery. The book actually wasn't for me after all.
Adjusting to a lupus diagnosis has not been easy. In fact, I still have trouble accepting it.
"Maybe he'll tell me he's decided I don't have lupus," I told Johnie on the way to my most recent appointment with my rheumatologist. And as we chatted, I hedged the subject with Dr. Lewis. He wasn't expressing any doubt in my diagnosis. So I finally said, "I'm having trouble accepting this. I keep hoping you'll say maybe I don't have it."
He just nodded sympathetically. Perfect opportunity and he didn't take it.
I am not sure if it was the lupus diagnosis, the other issues I was dealing with when I received the news or a combination of it all, but I feel like I am a completely different person than I was a year ago.
In many ways better, and in some ways maybe not.
After a sarcastic conversation about my current condition a friend sent an e-mail asking: Seriously, how are you doing?
I hadn't yet actually put into words how I was doing. I told him I felt like there had been a fundamental shift deep inside me as a person and that I was still adjusting. I told him I was thankful for having what I think is a better perspective on life and for being able to appreciate things I took for granted before.
Like the mornings that I wake up and don't feel sick.
Like being able to walk without my muscles aching.
Like having the energy to cook and, yes, even to clean.
Like going a full month without a migraine.
Being able to wear contacts.
Having energy after 3 pm, or after going to the grocery store.
Being able to think clearly.
Being with friends and family, going on a date, seeing plans through and not feeling sick.
Not having painful, ugly spots on my face.
And on and on...
I am still getting used to this new skin I feel like I'm living in. My knee-jerk reaction to the diagnosis was to hold on to the parts of me that I valued. In the "I have lupus" conversation with my college roommate, I assured her (and myself) that I would not change the important things. I would still love and celebrate food. I would still hike the mountains of my home. I would still laugh and joke and feel emotions dramatically.
But, I feel like every corner and crevice of my life has been touched. I feel much less determined to hang on to the things that made up the old me. And as I reflect on the changes, I thought it might be appropriate to take the month of May -- Lupus Awareness Month -- to share these first steps of my personal journey with chronic auto-immune disease.
May you find hope, encouragement, revelation or companionship on your journey.
---
This post is the first in a series on how lupus has affected me.
Click on the links below to read more:
Part 2: The bad times
Part 3: How lupus made me a better wife
Part 4: A practice of patience
Part 5: More on the pit
Part 6: Exhaustion
Part 7: Saying no
My diagnosis
My herbalist and the treatment option I am choosing right now
My recent lifestyle changes
To learn more about lupus, you may visit the Lupus Foundation of America.
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