I was diagnosed with Ankylosing Spondylitis on October 30, 2012. This time of year always makes me feel reflective, so I thought I would share a little update - four thoughts from four years of chronic illness. (I know, it's long. I have come to accept the fact that I am just not good at being concise. Sorry.)
One
It's hard to believe that it has been four years since I was first diagnosed with AS, but not hard in the way you might think. I don't mean that it feels like only yesterday that I was sitting in that doctor's office, knowing what was coming but still shocked to hear the words spoken. I don't mean that the time has flown by.
What I mean is this - It was only four years ago, but I can no longer remember what it felt like before. I can't remember the feeling of walking or sitting or sleeping without pain. I have no clear memory of a time when I felt well, when daily life wasn't such a struggle, when I looked ahead to the future without this looming black cloud. Occasionally, I come across an old picture from before, and I look at the person in the photo - hiking or holding a baby or just smiling in such a carefree way - and she feels like a stranger. Or Facebook pops up a "memory" of this day six years ago, and I read the happy words and try to remember being that person.
In some ways, this makes it less painful - I no longer feel the immediacy of this other life, the life before. On the other hand, I have trouble envisioning an "after" - a time when things aren't so difficult, when pain isn't so ever-present in my life. At this point, it's hard to know whether I should keep on hoping and praying for a reduction in symptoms, or if I need to keep my focus on accepting this illness and learning to live joyfully even when things are difficult.
Two
Physically, here's where I'm at:
- My feet continue to be my most persistent and disabling problem. I've adjusted life to limit my time standing or walking, but my feet still throb pretty persistently, and if I make a bad choice or get stuck on my feet for more than a minute or two, it can get bad pretty fast, to the point that even resting my feet on the ground is painful.
- My back and SI joint, which were the most painful parts at the start, seem to be thing that are most improved by my medications - They hurt, but not in the intense how-can-I-keep-breathing way that sometimes happened in the past.
- My eyes have been fine, thanks be to God. I've had a few times when I thought iritis was coming on, but I've been able to nip that in the bud with steroids. Now, when I have random eye pains, I think it's more from paranoia than actual inflammation. :)
- My knees hurt now, better at times and worse at others, but climbing stairs and squatting are pretty painful. Some days, I just can't genuflect at church, but I'm pretty confident the Lord understands.
- My shoulders, which were really bad last fall, then got slowly better over the past year, are now getting worse again, which I find really frustrating. Things that didn't normally cause pain now hurt because of my shoulder problems - brushing my hair, pulling a shirt on over my head, cutting vegetables, folding a towel, scrubbing a pot. I'm finding that hard to accept right now.
- I continue to really struggle with sleep. A big dose of melatonin each night has actually helped me fall asleep more easily when I go to bed, as long as it's an average pain day. But pain doesn't let me sleep long, and the second half of the night can be pretty rough. This is especially true now that the shoulder pain is back, which means that sleeping on my side is difficult (while sleeping on my stomach hurts my back and sleeping on my back puts too much pressure on my feet... I can't win!) I wake most mornings feeling nauseous and exhausted, but also somewhat glad that night is over.
- A lot of the time, I feel like I'm just staggering through life, trying to make it to the end of the day, trying to get my mind to block out the persistent pain and focus on the rest of the world.
- On the upside, I have not had any weird medical issues since last winter - no more cancer scares, liver problems, lung stuff, biopsies, etc. (I even got the all-clear after a recent follow-up scan of my benign breast tumor - I don't have to come back for annual checks on that anymore, thank goodness!) Looking back at my blog over the past few years, I am reminded of how hard all that other medical stuff was, when added on top of my regular day-to-day illness. I am so grateful that I've just been dealing with normal AS, with no extra doctors, tests, or worries on top of that.
- Also, after almost 9 months of back and forth with the insurance company and the least competent service provider I have ever worked with, I finally got approval for my very own, sized-for-long-legs wheelchair. Yay! (The chair I had used before this was a free one we got on loan from a wonderful non-profit. We really appreciated it, but it was too small for my long legs and the wheels fell off sometimes.) The new chair is lighter weight, which it makes it easier for the kids to push, and it's definitely more comfortable for me. However, it turns out I still hate sitting in it. And I have still not gotten over feeling really awkward when I run into people I know while I'm using a wheelchair. That said - it's nice to have something that works for me.
- Yes, I still look perfectly healthy.
(If you want to hear in more detail about what a "day in the life" with chronic illness looks like these days, click here to see my recent post on that subject.)
Three
If you can't tell by my less-than-rosy assessment of my physical health, I'm having a hard time right now, emotionally. It's hard to describe my main feeling these days - It's not really anger or fear or frustration or even sadness (although those are all present from time to time). I suppose what I feel most often is just a bone-deep exhaustion - in the physical but also the emotional sense. I feel so old and so tired, and it's really discouraging to look to the future and think that I likely have many, many more years of daily struggle ahead.
Most of the time, I teeter on the edge between acceptance and grief, but there have been maybe just a few too many things recently that have pushed me back into the grieving process all over again:
- I sent my doctor my renewal form for the temporary handicap sticker for my car, something I have done every six months for the past few years. This time, without comment or explanation, she just sent back the permanent disability form instead. This of course saves me money and time and the hassle of sending in a new form twice a year... But still. That threw me for a loop for a while - the reality of my own doctor saying that we should just assume this is permanent.
- Benjamin wanted to buy me earrings for my birthday, so I went with him to a local store to pick some together. I spent probably 10 minutes on my feet, looking around with him to find something we both liked. The pain from that little venture, an attempt to act healthy and enjoy some time with my son on my birthday, left me with intense pain for days.
- I see pictures of people taking lovely fall hikes with their families, and it feels like a sudden punch in the gut - Will I never enjoy an autumn hike again? Ever?
You get the idea. Clearly, I'm spending too much time feeling sorry for myself. I know this, and I know that I need to get out of it, and I know that so many people in the world are carrying heavier burdens. I know that I am so richly blessed in so many ways, that it's really almost silly to complain. And yet - this is the truth about where my heart is at. This is really hard, and it's not getting easier.
Four
This is the point in just about every blog post where I look back up at what I've written, worry that I have been too negative (or perhaps too honest), and try to pivot to a more hopeful ending, both for your sake and for mine. So, here's my best attempt at that:
First, I am already working on a few things to improve my health and my emotional outlook:
- I don't have another appointment with my rheumatologist until December, but I've reached out to her to let her know I feel like things are getting worse. I'm hoping she will have some suggestions about what I might be able to try next.
- I got a pile of books from the library about managing chronic pain and living well with chronic illness. It's been a while since I've done much self-education on those subjects, and I think I need to learn some new coping skills. One of the first books I read has already given me some good things to think about and work on, especially with my own psychological habits. In addition, it's strangely comforting to hear from other people whose concerns, questions, and emotions feel so familiar - It makes me feel less alone. I can't spend all my time reading and thinking about these things, but now feels like a good time to get more ideas for how I can better live this life I have been given.
- Writing this blog post is one little moment of full honesty with those who love me. Again, I don't want to spend too much of my life wallowing in this one aspect of who I am, but every once in a while, I need to just say these things and know that people care.
Finally and most importantly, my Lord understands suffering and walks with me every step of the way. I know I have wonderful family and friends to rely on, but ultimately, He is the one who is there for every moment of every day. Right now, I often feel like I don't have the strength to carry on, but I trust that my Savior has strength enough for both of us.
All my love,
Sara
Monday, October 31, 2016
A Day in the Life
It's difficult for people who do not deal with chronic illness to understand what life is like for those of us who do. I think that difficulty is compounded by the fact that many chronic illnesses like mine are invisible - unless you catch me at an unguarded moment, you might not have any idea that I'm sick and in pain. However, every once in a while, I have a conversation with a compassionate person who asks good questions and seems to genuinely want to understand what life is like for someone who struggles with chronic illness and chronic pain. It's certainly hard to describe, especially because every day is unpredictable and different. But here's a little picture of a day in my life, for those of you who really do want to know more:
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My alarm goes off Tuesday morning at 6:00am, but I have been awake on and off for most of the night, tossing and turning and trying to find a position that offers a little relief from the pain. My back and hips get especially achy when I'm not moving, so the second half of the night is often pretty rough. I keep an electric heating pad in bed with me (as well as one on the couch, one in the car, and one at my desk at work), so I move it around to whatever part seems to hurt the worse at any given point; in the early hours this morning, my lower back was the culprit. I usually sleep on my side with a whole constellation of pillows supporting me into the most comfortable position, but right now my shoulders are pretty painful as well, so I am trying to sleep on my back. I must have rolled over onto my side sometime in the last few hours though, because my right shoulder is throbbing.
Mornings are hard, but I've come to accept that they are always going to be hard, so I've had to become very disciplined about my routine to make sure I don't just make excuses and stay in bed all day. When my alarm goes off, I sit up, stretch a little bit, adjust my heating pad to wherever my body needs it most, and turn on my light. I wake up with nausea and a headache most days, which I assume is just a symptom of the lack of sleep, but I've learned that those will fade in the first hour or so, so I've stopped asking myself whether I'm well enough to get out of bed. I never feel well enough to get up in the morning, but I am, and honestly, laying in bed longer just makes the stiffness increase. So, I sit up and read for 15 minutes while I wake up. I get two daily spiritual reflection emails, so I try to make those the first thing that enter my head in the morning. Then, once I'm awake enough that I won't just drift back to sleep, I begin my morning prayer. I start with saying good morning to God, then the first two lines of the Magnificat: "My soul proclaims the greatness of the Lord/ My spirit rejoices in God my savior." After that, I move into a time of thanksgiving. Several years ago, I realized I was starting every day sad and grumpy, and I knew I needed to make a change, to find something to push away the feelings of despair and discouragement that greet me each morning. So, I thank God for all the good things in my life, whether I feel like it or not, to remind myself that, no matter how much my body hurts, I am richly blessed. (A little dose of perspective to start the day.) Then I pray through the day ahead, asking God's help with each task, event, and relationship that will be part of my day. And I always ask God to give me a joyful spirit and help me to be focused on generously loving others, rather than focusing too much on how I feel. Then I make a morning offering, giving my day to God. I use an offering that includes giving God all my "joys and sufferings," and here I add a particular intention for which I will offer today's suffering. A woman in my Mom's Group recently shared a heavy struggle that she is going through, so today, I am offering my suffering for her peace and healing. I'll try to remember that intention throughout the day, whenever I am in pain (although, to be perfectly honest, I often forget).
It's 6:30am now, and I'm ready to get out of bed. Or, as ready as I will ever be. I make sure not to put my feet on the ground until I have my tennis shoes (with their super padded orthotic inserts) slipped on, since my plantar fasciitis is worse first thing in the morning. Movement is very stiff when I first get up, but I know that the more I move, the better I will feel, so I spend the first 10 minutes or so walking around the house briskly, picking things up from the night before. Today, my right knee is a bit painful, so I take it slow on the stairs. A hot shower helps too, and with the plastic shower chair to sit on, it's almost pleasant. Today I am being very careful with the way I move my shoulders to wash my hair, and I'm glad that I decided to cut my hair short to make this easier. My nausea and headache are mostly gone by the time I get out of the shower, and I'm feeling a little more able to face the day. I take my morning anti-inflammatory medication (Celebrex), finish getting ready for work, and head out the door. Today, I have managed to be nice to my family the whole morning, which I consider a great accomplishment. (My standards for great accomplishments have clearly been significantly lowered in recent years.)
I head into work, where I immediately adjust the pillow that helps support my back and turn on my heating pad. As always, I have a lot to do, and once I get into the groove, I don't notice my pain for a while. After an hour or so at my desk, I feel myself stiffening up, so I take a walk around the office and try to loosen up again. Things are going well all morning, but then an acquaintance stops by the office unexpectedly, and I stand in the entryway chatting and being friendly. After a minute or two, I notice the pain in my back and my feet increasing, but I'm not quite comfortable enough with this person to excuse myself or find a seat, so I stand longer than I know I should. By the time I say goodbye after five minutes, I can feel pain buzzing through me, and I shut the door in my office and lay down on the couch. I'm kicking myself for not using the line I have prepared for just this situation ("Do you mind if we have this conversation sitting down?"), but I take a few deep breaths and acknowledge that it was good that I took the time to be friendly. Fortunately, I have some reading I have to do for an upcoming Moms Group, so I pull my heating pad over to the couch, put my feet up, and keep working while the pain subsides. After 20 minutes or so, my feet are not throbbing so badly, so I get back to my desk and keep on working. Fortunately, I recently added a thick anti-fatigue mat to rest my feet on, so there's less pressure on my feet as I put them gingerly on the ground.
It's Tuesday, so I have to take Benjamin to speech therapy at UW-Milwaukee after work. The two flights of stairs up to the school office are a bit harder than usual today, but my sweet son always greets me with a smile and a hug, so that makes it worth it. At UWM, I pull into a handicapped parking space and hang my disabled tag on the mirror. I still feel a little pang every time I hang up that blue tag, the permanent disability version that says my doctor assumes I will be disabled forever. But I'm grateful that I can park right in front of the building, rather than a few blocks away. When I get out of the car, I look around to see if anyone is watching and wondering whether I really deserve to be parking there. I know it's silly, but if someone is staring, I might limp a little more, just to avoid the possibility of a confrontation with someone who thinks I don't look disabled. I have only once been asked about why I was parking in a disabled spot, and that person was actually fairly gentle, but I know others with invisible illnesses have been targeted in rather cruel ways by those who doubt they really need special consideration.
After speech, I head down to Marquette High to pick up Sam. There's more traffic at this time of day, and the trip from the East Side to downtown to home takes about 40 minutes. About halfway through that time, I am wishing I had chosen to wear my tennis shoes to work, instead of my dress shoes (which are actually super cushy Sketchers with another padded insert added inside - but still not as comfy as my tennis shoes). Driving is hard on my feet, and my neck is starting to hurt too (I remind myself I really should contact my doctor about all the new joints that are flaring up these days). Pain is starting to close in around me. At this point, I know it's all about breathing and just staying focused on making it into bed as quickly as I can. When I park the car at home, I stumble inside, remind the kids what time they should start homework, and head to bed. Fortunately, Sam and Benjamin are used to the drill - they know I need to go straight to bed at the end of a work day, and they'll come up and find me if they need anything. (The perpetual question passes through my mind - "Should I really be working outside the home, if it means I have nothing left for my family in the evening?" - but I push the doubt aside, because Mike and I have talked about this, and I've prayed about it at length, and we've decided that I should keep working - for now at least.)
In bed, I prop my feet up to take the pressure off, turn on my heating pad (my perpetual companion!), and close my eyes for a few minutes to let the pain subside a bit. When it's really bad like this, every part of my body hurts, from arm muscles to finger joints, but I know that this is just a symptom of pushing too hard and that it will fade with a little rest. After 15 minutes or so, I pull up the daily Scripture readings on my phone. This is supposed to be my prayer time, and I'm trying really hard to be faithful to that, no matter how I feel. I also turn on the photo therapy lamp next to my bed to soak in some extra "happy light" while I pray. I got the lamp last year to try to help with the seasonal depression that creeps in over the winter months, and I know that you're supposed to start using it early in fall. A line from the psalm ("Let your mercy come to me, O Lord") really jumps out to me, so I repeat it to God, over and over, pleading for his help (while trying not to let my mind wander back to everything I still have to do at work). After some time, I move onto my daily intentions, praying for my husband, my children, my godchildren, my penpals on death row, my co-workers, etc... Sometime while I'm making my way through this list, I start to drift off to sleep. I know it's something I should work on - maybe sitting up more for prayer so that I can stay focused until the end. But today I don't have the willpower, and I doze a bit (in the presence of God, at least!).
I'm awakened by Mike coming home from work. It takes every ounce of willpower I can muster to drag myself out of bed for dinner and some time with my family, but I am determined not to be a mom who spends the whole night in bed, so I get up and get moving. Dinner on Tuesdays is always leftovers or something very easy, because we know by now that even on a good day, I don't have the energy to cook after work. After we clean up dinner, I lie on the couch, exhausted but trying to remain emotionally present for my family. Benjamin knows to work on his homework at the dining room table, so that I can answer questions from the couch. He will bring completed work over to me to check. It takes a big effort to be patient and attentive, but I do my best. After homework and family prayer time, Benjamin heads up to to bed, while Sam gets back to his homework. Mike and I talk through the rest of our plans for the week, but he knows better than to bring up anything difficult or stressful - We've realized that I have pretty much no emotional resilience after 8:00 at night, and I tend to start crying for no good reason if I have to make a decision about anything more complicated than deciding who picks up Benjamin tomorrow (and sometimes even about something little like that).
At 9:00, I take my nightly dose of a melatonin and we head up to bed to watch an episode of The Newsroom, which is a blissful distraction from the pain in my feet, back, and shoulders. Getting really absorbed in a good show is one of the few times I don't notice my pain for a while, and to be honest, it's one of the highlights of my day. As we're getting settled in to go to sleep afterwards, Mike suddenly sits up and exclaims, "I'm sorry honey, we forgot to do your shot!" I whine a little, but sit up while Mike goes to grab my bi-weekly Cimzia injection from the fridge. I had to stop these immune-suppressant injections for a while last winter, while we were trying to figure out what was going on with my liver. I know from that experience that they really do help, so I try not to be too wimpy about the shot in my stomach. It really isn't that bad, especially compared to the Humira a few years ago (that hurt like crazy!), but I still dread the shots and reward myself with a piece of chocolate right afterwards. I'm grateful that I have good insurance, access to modern medicine, and that I am not experiencing any significant side effects from any of my medications right now. After the shot, Mike tells me, half-joking, how brave I am, and I take a few deep breaths while the pain subsides. It doesn't last long, and soon I'm settled back in, pillows adjusted, ready to go to sleep.
My feet are still throbbing, and my right shoulder is really bothering me, shooting pain all the way down my arm. I think, as I do almost every night, about the bottle of pain pills in my nightstand. I wonder how bad tonight will be and if I should take one or not, or maybe wait and see how bad things get and decide at midnight or so. When I first started taking them, even half a pill numbed over most of the pain and let me sleep well for at least the first few hours of the night. Even though I've been careful not to take them too often, maybe once a week or so, now one pill only reduces the pain by about half. Still, it's enough to make a difference. But I know that I probably have many years of pain ahead of me, and I don't want to be always ramping up the type or dosage of medication I need. Besides, with all the (justified) concern today about opioid abuse, I'm always wondering if I will still have access to a new prescription when this bottle runs out. Anyway, I decide things aren't that bad tonight and resolve to try to go to sleep without pain medication. I don't go to work on Wednesdays, so if it's a bad night, I can take it easy tomorrow.
As I am attempting to fall asleep, I try to distract myself with thoughts of happy things, to keep my mind from going down the rabbit-hole of questions and worries and despair. I take a few minutes to thank God for all that was good in my day and ask Him for help with the night ahead.
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So, there you have it. A day in my life with chronic illness. I know it was long, and maybe more detail than many of you need to know, but I hope it helps you understand a little more clearly what my reality looks like these days. Life is hard, but it's still good, and I am grateful to know that I have wonderful friends and family who really do care.
I am truly blessed.
I head into work, where I immediately adjust the pillow that helps support my back and turn on my heating pad. As always, I have a lot to do, and once I get into the groove, I don't notice my pain for a while. After an hour or so at my desk, I feel myself stiffening up, so I take a walk around the office and try to loosen up again. Things are going well all morning, but then an acquaintance stops by the office unexpectedly, and I stand in the entryway chatting and being friendly. After a minute or two, I notice the pain in my back and my feet increasing, but I'm not quite comfortable enough with this person to excuse myself or find a seat, so I stand longer than I know I should. By the time I say goodbye after five minutes, I can feel pain buzzing through me, and I shut the door in my office and lay down on the couch. I'm kicking myself for not using the line I have prepared for just this situation ("Do you mind if we have this conversation sitting down?"), but I take a few deep breaths and acknowledge that it was good that I took the time to be friendly. Fortunately, I have some reading I have to do for an upcoming Moms Group, so I pull my heating pad over to the couch, put my feet up, and keep working while the pain subsides. After 20 minutes or so, my feet are not throbbing so badly, so I get back to my desk and keep on working. Fortunately, I recently added a thick anti-fatigue mat to rest my feet on, so there's less pressure on my feet as I put them gingerly on the ground.
It's Tuesday, so I have to take Benjamin to speech therapy at UW-Milwaukee after work. The two flights of stairs up to the school office are a bit harder than usual today, but my sweet son always greets me with a smile and a hug, so that makes it worth it. At UWM, I pull into a handicapped parking space and hang my disabled tag on the mirror. I still feel a little pang every time I hang up that blue tag, the permanent disability version that says my doctor assumes I will be disabled forever. But I'm grateful that I can park right in front of the building, rather than a few blocks away. When I get out of the car, I look around to see if anyone is watching and wondering whether I really deserve to be parking there. I know it's silly, but if someone is staring, I might limp a little more, just to avoid the possibility of a confrontation with someone who thinks I don't look disabled. I have only once been asked about why I was parking in a disabled spot, and that person was actually fairly gentle, but I know others with invisible illnesses have been targeted in rather cruel ways by those who doubt they really need special consideration.
After speech, I head down to Marquette High to pick up Sam. There's more traffic at this time of day, and the trip from the East Side to downtown to home takes about 40 minutes. About halfway through that time, I am wishing I had chosen to wear my tennis shoes to work, instead of my dress shoes (which are actually super cushy Sketchers with another padded insert added inside - but still not as comfy as my tennis shoes). Driving is hard on my feet, and my neck is starting to hurt too (I remind myself I really should contact my doctor about all the new joints that are flaring up these days). Pain is starting to close in around me. At this point, I know it's all about breathing and just staying focused on making it into bed as quickly as I can. When I park the car at home, I stumble inside, remind the kids what time they should start homework, and head to bed. Fortunately, Sam and Benjamin are used to the drill - they know I need to go straight to bed at the end of a work day, and they'll come up and find me if they need anything. (The perpetual question passes through my mind - "Should I really be working outside the home, if it means I have nothing left for my family in the evening?" - but I push the doubt aside, because Mike and I have talked about this, and I've prayed about it at length, and we've decided that I should keep working - for now at least.)
In bed, I prop my feet up to take the pressure off, turn on my heating pad (my perpetual companion!), and close my eyes for a few minutes to let the pain subside a bit. When it's really bad like this, every part of my body hurts, from arm muscles to finger joints, but I know that this is just a symptom of pushing too hard and that it will fade with a little rest. After 15 minutes or so, I pull up the daily Scripture readings on my phone. This is supposed to be my prayer time, and I'm trying really hard to be faithful to that, no matter how I feel. I also turn on the photo therapy lamp next to my bed to soak in some extra "happy light" while I pray. I got the lamp last year to try to help with the seasonal depression that creeps in over the winter months, and I know that you're supposed to start using it early in fall. A line from the psalm ("Let your mercy come to me, O Lord") really jumps out to me, so I repeat it to God, over and over, pleading for his help (while trying not to let my mind wander back to everything I still have to do at work). After some time, I move onto my daily intentions, praying for my husband, my children, my godchildren, my penpals on death row, my co-workers, etc... Sometime while I'm making my way through this list, I start to drift off to sleep. I know it's something I should work on - maybe sitting up more for prayer so that I can stay focused until the end. But today I don't have the willpower, and I doze a bit (in the presence of God, at least!).
I'm awakened by Mike coming home from work. It takes every ounce of willpower I can muster to drag myself out of bed for dinner and some time with my family, but I am determined not to be a mom who spends the whole night in bed, so I get up and get moving. Dinner on Tuesdays is always leftovers or something very easy, because we know by now that even on a good day, I don't have the energy to cook after work. After we clean up dinner, I lie on the couch, exhausted but trying to remain emotionally present for my family. Benjamin knows to work on his homework at the dining room table, so that I can answer questions from the couch. He will bring completed work over to me to check. It takes a big effort to be patient and attentive, but I do my best. After homework and family prayer time, Benjamin heads up to to bed, while Sam gets back to his homework. Mike and I talk through the rest of our plans for the week, but he knows better than to bring up anything difficult or stressful - We've realized that I have pretty much no emotional resilience after 8:00 at night, and I tend to start crying for no good reason if I have to make a decision about anything more complicated than deciding who picks up Benjamin tomorrow (and sometimes even about something little like that).
At 9:00, I take my nightly dose of a melatonin and we head up to bed to watch an episode of The Newsroom, which is a blissful distraction from the pain in my feet, back, and shoulders. Getting really absorbed in a good show is one of the few times I don't notice my pain for a while, and to be honest, it's one of the highlights of my day. As we're getting settled in to go to sleep afterwards, Mike suddenly sits up and exclaims, "I'm sorry honey, we forgot to do your shot!" I whine a little, but sit up while Mike goes to grab my bi-weekly Cimzia injection from the fridge. I had to stop these immune-suppressant injections for a while last winter, while we were trying to figure out what was going on with my liver. I know from that experience that they really do help, so I try not to be too wimpy about the shot in my stomach. It really isn't that bad, especially compared to the Humira a few years ago (that hurt like crazy!), but I still dread the shots and reward myself with a piece of chocolate right afterwards. I'm grateful that I have good insurance, access to modern medicine, and that I am not experiencing any significant side effects from any of my medications right now. After the shot, Mike tells me, half-joking, how brave I am, and I take a few deep breaths while the pain subsides. It doesn't last long, and soon I'm settled back in, pillows adjusted, ready to go to sleep.
My feet are still throbbing, and my right shoulder is really bothering me, shooting pain all the way down my arm. I think, as I do almost every night, about the bottle of pain pills in my nightstand. I wonder how bad tonight will be and if I should take one or not, or maybe wait and see how bad things get and decide at midnight or so. When I first started taking them, even half a pill numbed over most of the pain and let me sleep well for at least the first few hours of the night. Even though I've been careful not to take them too often, maybe once a week or so, now one pill only reduces the pain by about half. Still, it's enough to make a difference. But I know that I probably have many years of pain ahead of me, and I don't want to be always ramping up the type or dosage of medication I need. Besides, with all the (justified) concern today about opioid abuse, I'm always wondering if I will still have access to a new prescription when this bottle runs out. Anyway, I decide things aren't that bad tonight and resolve to try to go to sleep without pain medication. I don't go to work on Wednesdays, so if it's a bad night, I can take it easy tomorrow.
As I am attempting to fall asleep, I try to distract myself with thoughts of happy things, to keep my mind from going down the rabbit-hole of questions and worries and despair. I take a few minutes to thank God for all that was good in my day and ask Him for help with the night ahead.
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So, there you have it. A day in my life with chronic illness. I know it was long, and maybe more detail than many of you need to know, but I hope it helps you understand a little more clearly what my reality looks like these days. Life is hard, but it's still good, and I am grateful to know that I have wonderful friends and family who really do care.
I am truly blessed.
Sunday, March 6, 2016
In case you're wondering
Things I don't have:
- Primary Biliary Cirrhosis (an autoimmune liver disease with an average survival time of 1-4 years)
- Celiac Disease
- Significant problems with my lungs (Monday's chest X-ray looked fine)
- Enough time, money, energy, and emotional fortitude to keep on dealing with random health concerns in addition to my everyday chronic illness
Things I do have:
- Gilbert's Syndrome (a benign liver condition in which my liver doesn't properly process bilirubin)
- Very minor pleural effusions ("not clinically significant," probably just an inflammatory process related to my AS)
- Ankylosing spondylitis. Still.
- A part-time job that accommodates numerous medical appointments; access to good medical care (even if it's a bit complicated and time-consuming); a supportive family; a God who is always faithful
All things considered, I think I still come out ahead.
- Primary Biliary Cirrhosis (an autoimmune liver disease with an average survival time of 1-4 years)
- Celiac Disease
- Significant problems with my lungs (Monday's chest X-ray looked fine)
- Enough time, money, energy, and emotional fortitude to keep on dealing with random health concerns in addition to my everyday chronic illness
Things I do have:
- Gilbert's Syndrome (a benign liver condition in which my liver doesn't properly process bilirubin)
- Very minor pleural effusions ("not clinically significant," probably just an inflammatory process related to my AS)
- Ankylosing spondylitis. Still.
- A part-time job that accommodates numerous medical appointments; access to good medical care (even if it's a bit complicated and time-consuming); a supportive family; a God who is always faithful
All things considered, I think I still come out ahead.
Thursday, February 25, 2016
Now this is just getting silly
Just a brief update:
I had my right upper quadrant ultrasound today, and the PA called me this afternoon to let me know that all looked fine with my liver, biliary tree, and gallbladder. Yay!
But the ultrasound also identified "pleural effusions" (fluid around the lungs). Boo! That wasn't what they were looking for at all, and the PA seemed totally baffled by the whole thing. Next step is to check with my primary care doctor and rheumatologist to see what they want to do about figuring out the lung thing. I'm not experiencing shortness of breath, which would be the most obvious symptom of lung problems, so I'm hoping they say we can just ignore it, because this is starting to feel a little ridiculous.
I'm beginning to wonder if every time I go to a doctor they're just going to find something new wrong with me - fibroadenoma, low platelets, high bilirubin, fluid around my lungs, etc. Should I take this as a sign that my body is just falling apart? Or maybe that too many medical tests just leads to finding weird things that would never even have been noticed otherwise? Seriously, I am starting to feel personally responsible for those rising health care costs we keep on hearing about.
Apparently, most of the stuff they were testing for in my blood work involves a lab in Iowa, so I won't get the results of those things until next week. More waiting...
I had my right upper quadrant ultrasound today, and the PA called me this afternoon to let me know that all looked fine with my liver, biliary tree, and gallbladder. Yay!
But the ultrasound also identified "pleural effusions" (fluid around the lungs). Boo! That wasn't what they were looking for at all, and the PA seemed totally baffled by the whole thing. Next step is to check with my primary care doctor and rheumatologist to see what they want to do about figuring out the lung thing. I'm not experiencing shortness of breath, which would be the most obvious symptom of lung problems, so I'm hoping they say we can just ignore it, because this is starting to feel a little ridiculous.
I'm beginning to wonder if every time I go to a doctor they're just going to find something new wrong with me - fibroadenoma, low platelets, high bilirubin, fluid around my lungs, etc. Should I take this as a sign that my body is just falling apart? Or maybe that too many medical tests just leads to finding weird things that would never even have been noticed otherwise? Seriously, I am starting to feel personally responsible for those rising health care costs we keep on hearing about.
Apparently, most of the stuff they were testing for in my blood work involves a lab in Iowa, so I won't get the results of those things until next week. More waiting...
Saturday, February 20, 2016
The Latest
For those of you following along at home, here's a brief update after my appointment with the gastroenterologist on Friday:
Basically I don't have any more answers. I had been hoping that she would look at my info and say "it's no problem, we don't have to worry about it," but that's not exactly what happened. It's still quite likely it's not a big deal (perhaps Gilbert's Syndrome, which is basically a benign genetic condition where your liver doesn't properly process bilirubin), but we need to do some further testing to rule out other causes. My increasing nausea, low platelets, and autoimmune stuff raise some red flags, I guess. So, I'm in for an abdominal ultrasound next Thursday morning, as well as more blood work for all sorts of weird things (anti-mitochondrial antibodies? my knowledge of the human body is expanding every day!).
On the upside, my elevated levels are primarily indirect (unconjugated) bilirubin, which makes it unlikely that this has anything to do with medication. So, that's good. Also, apparently you don't start turning yellow until your bilirubin is consistently above 3.0. My last test was 2.9, so we'll see. :)
I do think going back on the Cimzia has helped my pain somewhat. It hasn't been quite as bad the last week.
Also, it's warm and sunny today! I'm going to attempt a bike ride with my very eager son.
Basically I don't have any more answers. I had been hoping that she would look at my info and say "it's no problem, we don't have to worry about it," but that's not exactly what happened. It's still quite likely it's not a big deal (perhaps Gilbert's Syndrome, which is basically a benign genetic condition where your liver doesn't properly process bilirubin), but we need to do some further testing to rule out other causes. My increasing nausea, low platelets, and autoimmune stuff raise some red flags, I guess. So, I'm in for an abdominal ultrasound next Thursday morning, as well as more blood work for all sorts of weird things (anti-mitochondrial antibodies? my knowledge of the human body is expanding every day!).
On the upside, my elevated levels are primarily indirect (unconjugated) bilirubin, which makes it unlikely that this has anything to do with medication. So, that's good. Also, apparently you don't start turning yellow until your bilirubin is consistently above 3.0. My last test was 2.9, so we'll see. :)
I do think going back on the Cimzia has helped my pain somewhat. It hasn't been quite as bad the last week.
Also, it's warm and sunny today! I'm going to attempt a bike ride with my very eager son.
Wednesday, February 10, 2016
February Update
Happy Lent everyone! I never seem to make time to write blog posts when things are going smoothly, so my apologies for ending the long gap in posts with more less-than-good news. But I know some people want to hear what's going on, so here's the deal:
In my routine blood work at the beginning of December, my bilirubin levels were a bit high. So, my doctor asked me to come back in to retest them in a month. They were quite a bit higher at the retest, so she asked me to stop taking my Cimzia (the immune-suppressant injection I do every two weeks). Liver problems would be an unusual side effect of Cimzia, but it was worth checking to see if stopping those injections would help. (One positive effect of this hiatus is that I can say with confidence that the Cimzia had been helping. It's sometimes hard to tell, when my pain levels are so variable anyway. But I've definitely noticed my pain increasing significantly over the past month, and it's made for some pretty rough days and nights. So - the Cimzia does help somewhat. Good to know.)
Anyway, after a month off the Cimzia, I went in for a retest last week, and my liver numbers are still climbing. The upside: I am able to restart the Cimzia, since it seems unlikely that it's the culprit. Hopefully it will kick in again soon and my pain will be more manageable. The downside: neither my rheumatologist nor my primary care doctor know what's going on, so now I have to go see a liver specialist to see if we can figure it out and decide what needs to be done next.
It was going to take until late March to get in to see the liver specialist, which is way longer than I want to wait to get this resolved. Fortunately, the doctor has a physician assistant that I can see next week, so we'll start there.
As is always wise when you have undiagnosed medical problems, I've spent a fair amount of time with Doctor Google. (Actually, I don't have too much of a tendency to freak out about things I read on the internet, so mostly it's just helpful information gathering.) From what I can tell, and from what my doctor has said, it seems like high bilirubin can be caused by all sorts of different things, some of which are serious and some of which are not a big deal at all. And it seems like there's no real way of knowing at this point. So, I'm choosing not to worry about it. We'll just wait and see what I find out next Friday. I'm not turning yellow yet, so I think that's a good sign. :)
It's been a rough couple of months, but I'm trying to remember that this time of year is always rough in Wisconsin - chronic illness or not. Seriously, we all need some more warmth and sunshine! I'm hopeful that restarting the Cimzia will bring my pain back to "I can live with this" levels and that the liver thing will end up being no big deal. If not, at least I have spring and Easter to look forward to!
In the meantime, prayer, fasting, and almsgiving seem like a good way to pass the time while I wait:"Even now, says the Lord, return to me with your whole heart, with fasting, and weeping, and mourning. Rend your hearts, not your garments, and return to the Lord, your God."
In my routine blood work at the beginning of December, my bilirubin levels were a bit high. So, my doctor asked me to come back in to retest them in a month. They were quite a bit higher at the retest, so she asked me to stop taking my Cimzia (the immune-suppressant injection I do every two weeks). Liver problems would be an unusual side effect of Cimzia, but it was worth checking to see if stopping those injections would help. (One positive effect of this hiatus is that I can say with confidence that the Cimzia had been helping. It's sometimes hard to tell, when my pain levels are so variable anyway. But I've definitely noticed my pain increasing significantly over the past month, and it's made for some pretty rough days and nights. So - the Cimzia does help somewhat. Good to know.)
Anyway, after a month off the Cimzia, I went in for a retest last week, and my liver numbers are still climbing. The upside: I am able to restart the Cimzia, since it seems unlikely that it's the culprit. Hopefully it will kick in again soon and my pain will be more manageable. The downside: neither my rheumatologist nor my primary care doctor know what's going on, so now I have to go see a liver specialist to see if we can figure it out and decide what needs to be done next.
It was going to take until late March to get in to see the liver specialist, which is way longer than I want to wait to get this resolved. Fortunately, the doctor has a physician assistant that I can see next week, so we'll start there.
As is always wise when you have undiagnosed medical problems, I've spent a fair amount of time with Doctor Google. (Actually, I don't have too much of a tendency to freak out about things I read on the internet, so mostly it's just helpful information gathering.) From what I can tell, and from what my doctor has said, it seems like high bilirubin can be caused by all sorts of different things, some of which are serious and some of which are not a big deal at all. And it seems like there's no real way of knowing at this point. So, I'm choosing not to worry about it. We'll just wait and see what I find out next Friday. I'm not turning yellow yet, so I think that's a good sign. :)
It's been a rough couple of months, but I'm trying to remember that this time of year is always rough in Wisconsin - chronic illness or not. Seriously, we all need some more warmth and sunshine! I'm hopeful that restarting the Cimzia will bring my pain back to "I can live with this" levels and that the liver thing will end up being no big deal. If not, at least I have spring and Easter to look forward to!
In the meantime, prayer, fasting, and almsgiving seem like a good way to pass the time while I wait:"Even now, says the Lord, return to me with your whole heart, with fasting, and weeping, and mourning. Rend your hearts, not your garments, and return to the Lord, your God."
Monday, November 2, 2015
Thoughts from Three Years of Chronic Illness
October 30th is the day I was diagnosed with Ankylosing Spondylitis, back in 2012, so this time of year always makes me feel a little reflective.
That day seems like a very long time ago. I can't really remember what is was like before, in that hazy past when I was healthy, when chronic pain and illness weren't part of my daily life. Of course, it's not like I suddenly got sick on that day in October. I had been dealing with back pain for years, and some other new symptoms for a few months. The diagnosis just put a label on what was happening with my body (which was helpful) and gave me a lot of new things to worry about (not as helpful). It wasn't until the Spring of 2013 that things started getting a lot worse and I began to see in real terms how this disease was going to change my life.
So, it's not like my life changed all at once on October 30th, 2012, but still - it's a date I always remember, and it seems like a good time to give my loved ones an honest update on what's been going on with me. I know it has been a while.
I wish I had made the time to write a post in August or September, because it would have been great to share good news with all of you. Instead, I share it in retrospect, with a tinge of sadness mixed in.
For almost two months, I felt better. Probably the best I've felt in two and a half years. It was glorious. My feet were getting better. I had more energy. I would wake up in the morning feeling ok about life. I could spend a day at work and come home with some energy left to make dinner or spend time with my kids. I actually wanted to do things - hang out with friends, take on new projects at work, clean out the fridge, go on dates with my husband.
It was such a blessing to be feeling good when we went to Philadelphia for the World Meeting of Families. When we made those plans earlier in the year, I had mentally prepared myself for a lot of painful time in the car (my body does not like all that time sitting still in a small space), moving around the conference in a wheelchair, and probably needing to spend a few days of the trip in bed recovering from activities. Instead, I felt pretty good. We had some pretty long days, getting up early to drive into Philadelphia, spending the whole day at the conference, and then driving home late in the evening. But my body held up really well. Of course, "really well" for me was still not what you might consider normal - I still did the Papal Mass in a wheelchair and dealt with some significant pain in the car and when trying to sleep in beds other than my own. But it was a definite improvement.
My health and my pain levels have gone up and down over the course of these past few years, and I've gotten used to those fluctuations. I learned a while ago that it isn't helpful to grab onto one good day or week and wonder "Am I getting better? Is something I'm doing actually helping? Could I be turning the corner?" That only leads to a lot of disappointment. Instead, I've trained myself to appreciate good days but not hold on to them too tightly or expect the next day to be good too.
But I felt better for most of August. And then for most of September too. And I was beginning to think, "Hey, maybe I really am getting better!" I started a new medication at the beginning of August, and I was feeling hopeful that maybe this one was actually working. I didn't say anything to anyone for a while, not wanting to jinx it. Without really talking about it too much, Mike and I started to shift some things in our family routine: I started getting up earlier to help with the kids in the morning, so that Mike could go for a run. When we went to hang out with friends who live four blocks away, I realized I could walk to their house instead of taking the car. I started working more hours and spending less time resting. I tried to remember to be grateful for every good day, while keeping in mind that it might not last.
And it didn't. It wasn't a sudden change, just a slight shift, day by day. Needing to go straight to bed after a day at work. Sitting down to brush my teeth instead of standing. Wincing with knee pain when I walked up the stairs. Choosing not to blow dry my hair because my shoulders hurt too much. Feeling the pain of my feet resting on the ground when I sit. Long, long nights that leave me exhausted and sad. The feeling of "how am I going to make it through this day?" when I get up in the morning, It's all familiar, of course. Nothing new. But it was gone for a while, and somehow that makes it harder to handle right now.
I know what I need to do: I need to be grateful for those weeks that were so good, to treasure them and treat them as a beautiful gift. I need to adjust things in our routine, let certain things go, stop trying to do so much. I need to ask for help. I need to be careful about how I spend my time and energy, so I have enough left for what is most important. I need to get out of my own head, push aside the self-pity, and focus on generously loving others. Mostly, I need to turn to God with all of this and trust Him to take care of me.
So, I am working on doing those things. It's a hard moment now, but I know that my emotions will settle over time. I know that I have my amazing husband, children, family, friends, and faith community to support me. I know that life is hard for a lot of people in a lot of different ways, and I experience this cross in the midst of a life full of great blessings. I know a lot more now than I did three years ago, and I am grateful for that.
----
On our pilgrimage to the World Meeting of Families, our family learned and prayed this daily offering, written by Saint Ignatius. We continue to pray it together when we drive to work and school in the morning, and I am so grateful that I have these words ingrained in my mind and heart. Perhaps God knew just what I would need right now.
Take, Lord, and receive
all my liberty, my memory, my understanding,
and my entire will.
All I have and call my own.
You have given all to me.
To you, Lord, I return it.
Everything is yours;
do with it what you will.
Give me only your love and your grace.
That is enough for me.
Amen to that.
That day seems like a very long time ago. I can't really remember what is was like before, in that hazy past when I was healthy, when chronic pain and illness weren't part of my daily life. Of course, it's not like I suddenly got sick on that day in October. I had been dealing with back pain for years, and some other new symptoms for a few months. The diagnosis just put a label on what was happening with my body (which was helpful) and gave me a lot of new things to worry about (not as helpful). It wasn't until the Spring of 2013 that things started getting a lot worse and I began to see in real terms how this disease was going to change my life.
So, it's not like my life changed all at once on October 30th, 2012, but still - it's a date I always remember, and it seems like a good time to give my loved ones an honest update on what's been going on with me. I know it has been a while.
I wish I had made the time to write a post in August or September, because it would have been great to share good news with all of you. Instead, I share it in retrospect, with a tinge of sadness mixed in.
For almost two months, I felt better. Probably the best I've felt in two and a half years. It was glorious. My feet were getting better. I had more energy. I would wake up in the morning feeling ok about life. I could spend a day at work and come home with some energy left to make dinner or spend time with my kids. I actually wanted to do things - hang out with friends, take on new projects at work, clean out the fridge, go on dates with my husband.
It was such a blessing to be feeling good when we went to Philadelphia for the World Meeting of Families. When we made those plans earlier in the year, I had mentally prepared myself for a lot of painful time in the car (my body does not like all that time sitting still in a small space), moving around the conference in a wheelchair, and probably needing to spend a few days of the trip in bed recovering from activities. Instead, I felt pretty good. We had some pretty long days, getting up early to drive into Philadelphia, spending the whole day at the conference, and then driving home late in the evening. But my body held up really well. Of course, "really well" for me was still not what you might consider normal - I still did the Papal Mass in a wheelchair and dealt with some significant pain in the car and when trying to sleep in beds other than my own. But it was a definite improvement.
My health and my pain levels have gone up and down over the course of these past few years, and I've gotten used to those fluctuations. I learned a while ago that it isn't helpful to grab onto one good day or week and wonder "Am I getting better? Is something I'm doing actually helping? Could I be turning the corner?" That only leads to a lot of disappointment. Instead, I've trained myself to appreciate good days but not hold on to them too tightly or expect the next day to be good too.
But I felt better for most of August. And then for most of September too. And I was beginning to think, "Hey, maybe I really am getting better!" I started a new medication at the beginning of August, and I was feeling hopeful that maybe this one was actually working. I didn't say anything to anyone for a while, not wanting to jinx it. Without really talking about it too much, Mike and I started to shift some things in our family routine: I started getting up earlier to help with the kids in the morning, so that Mike could go for a run. When we went to hang out with friends who live four blocks away, I realized I could walk to their house instead of taking the car. I started working more hours and spending less time resting. I tried to remember to be grateful for every good day, while keeping in mind that it might not last.
And it didn't. It wasn't a sudden change, just a slight shift, day by day. Needing to go straight to bed after a day at work. Sitting down to brush my teeth instead of standing. Wincing with knee pain when I walked up the stairs. Choosing not to blow dry my hair because my shoulders hurt too much. Feeling the pain of my feet resting on the ground when I sit. Long, long nights that leave me exhausted and sad. The feeling of "how am I going to make it through this day?" when I get up in the morning, It's all familiar, of course. Nothing new. But it was gone for a while, and somehow that makes it harder to handle right now.
I know what I need to do: I need to be grateful for those weeks that were so good, to treasure them and treat them as a beautiful gift. I need to adjust things in our routine, let certain things go, stop trying to do so much. I need to ask for help. I need to be careful about how I spend my time and energy, so I have enough left for what is most important. I need to get out of my own head, push aside the self-pity, and focus on generously loving others. Mostly, I need to turn to God with all of this and trust Him to take care of me.
So, I am working on doing those things. It's a hard moment now, but I know that my emotions will settle over time. I know that I have my amazing husband, children, family, friends, and faith community to support me. I know that life is hard for a lot of people in a lot of different ways, and I experience this cross in the midst of a life full of great blessings. I know a lot more now than I did three years ago, and I am grateful for that.
----
On our pilgrimage to the World Meeting of Families, our family learned and prayed this daily offering, written by Saint Ignatius. We continue to pray it together when we drive to work and school in the morning, and I am so grateful that I have these words ingrained in my mind and heart. Perhaps God knew just what I would need right now.
Take, Lord, and receive
all my liberty, my memory, my understanding,
and my entire will.
All I have and call my own.
You have given all to me.
To you, Lord, I return it.
Everything is yours;
do with it what you will.
Give me only your love and your grace.
That is enough for me.
Amen to that.
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