Update

For those who have been wondering, I had my appointment with the hematologist today. When the nurse called our cell phone Friday (while we were at very noisy City Museum in St. Louis!), she said she would be able to get me in as soon as I could make it. I'm grateful that whatever is going on is considered serious enough to get an appointment quickly, because wondering about this has been driving me crazy and I wanted to just get on with it.

Unfortunately, I still have to wait a while to get more definitive answers. I met with the hematologist, who was a really nice guy who seemed very good at his job. He explained all sorts of things about how blood works, etc, and then let me know how we would be proceeding. Basically, today was just an initial consultation, plus drawing more blood for more lab tests. He asked me a bunch of questions to eliminate various causes of low platelet counts ("Have you been refinishing furniture recently?"), and it sounded like none of my answers were a particular red flag. 

One of the first things he asked me was if I had been doing any research online, and when I said yes, he said "So, you're probably worrying about leukemia, right?" I'm glad he cut to the chase right away, because it's pretty worrisome to be walking into the doors labeled "Cancer Center" and entering an office right across from the chemotherapy treatment chairs. Anyway, he said that yes, they would be looking to rule out leukemia, but he doesn't think that's the most likely explanation. So, that's a relief, sort-of. I've been down the "it's-probably-not-cancer-but-it-could-be" road once already, in November, and that turned out just fine, but I would much prefer to have the definitive "not cancer" answer right away. 

He mentioned a few more likely possibilities. One common cause is a medication side effect, but I've been off Humira for 6 months, and platelets are replaced every 7 days, so that's not a possibility, and Celebrex isn't linked to platelet problems. Personally, my money's on idiopathic thrombocytopenic purpura (ITP), which is another auto-immune problem (although it doesn't usually affect white blood cells, so maybe not). ITP can be serious, but more often, it's not really a big deal. Or maybe it's some other less-common thing.  I just have to wait and see.

Anyway, I go back next Wednesday to meet with the hematologist and discuss the test results. At that point, he'll let me know whether I need to do a bone marrow biopsy. From researching everything before this appointment, I knew that a biopsy might be needed, but I'm glad that I didn't have to do that today. That's a procedure I'm not super excited about, so I'm really hoping I get to avoid that. 

Enbrel, the medication I was supposed to start today, can decrease platelets (and increase cancer risk), so that's definitely on hold for now. 

So... that's the latest. Basically, I don't know anything more than I did before the appointment, but I got to hear it from a nice doctor rather than from the internet, so that's good. And I'm glad to hear that there are a bunch of things more likely than leukemia, so that's good too. Now, I'm back to waiting for another week.

I'm not super worried, mostly just feeling worn down by one thing after another. Your prayers for my strength and peace would be much appreciated. Thank you!

One More for the List

Over the past two years, I have been to an awful lot of medical appointments. From my best recollection, I count 11 different doctors or care providers I've seen - my wonderful primary care doctor and three different rheumatologists, plus an ophthalmologist, naturopath, acupuncturist, physical therapist, podiatrist, radiologist, and biopsy surgeon. (This is kind of a funny situation for a woman who didn't go to any doctor at all for about 6 years before this whole mess began!) Fortunately, I'm not a person who gets uneasy about medical appointments in general, and I have a lot of flexibility in my life that makes this way easier for me than it would be for many other people. Most of these doctors have been competent and compassionate, and some have even been able to help in one way or another, so I guess 11 isn't such a bad thing.

So, I've been thinking - To make this more fun, maybe I should set a goal. Do you think I can hit 20 by the end of next year? :) 

See, if I have a goal, then going to see one more doctor becomes a positive thing, right? Right?

When I went to my primary care doctor in November, there were some things that were a little off in my blood work, so she asked me to come back in 6 weeks to check again. Unfortunately, I found out yesterday that the numbers got worse, not better. I have a low platelet count and low white blood cell count, as well as a high MPV (mean platelet volume). The numbers aren't low enough to be dangerous right now, but the trend is in the wrong direction and it's something my doctor says we definitely need to figure out. We don't have a good explanation yet, so she said I need to go see a hematologist as soon as possible. (I have to call on Monday morning to make an appointment, hopefully for the week after Christmas.) Needless to say, the new medication (Enbrel) is on hold until we get this figured out.

Kind-of like the breast biopsy, there are a lot of different things it could be, a few of which are really bad and many of which are not a big deal at all. I'm not particularly worried, just a little tired of dealing with all of this right now. To be honest, the idea of having anything new that will make my daily life a little harder is a bit overwhelming at the moment. Things have been pretty rough recently, and it's hard to imagine adding another thing to the mix. 

But really, it's probably nothing, or maybe just another auto-immune problem. And we'll just roll with it, whatever happens. Hopefully we'll get it figured out soon! I'll let you know.

Until then, Merry Advent to you all!

Good News

The tumor is benign.

I just got off the phone with the nurse, and the tumor is a fibroadenoma, as we had hoped. At this point, we just have to monitor it closely and see if it grows over time. I will have an ultrasound again in 6 months, and if anything changes, we may need to consider removing it. But for now, it's nothing to worry about.

It was a long, long day (after a long, long month), and it feels so good now to take a deep breath and relax.

Thank you all for your prayers and support. I appreciate you so much.

All Is Well

For those of you thinking about me today, I just wanted to let you know that I had my biopsy this afternoon, and everything went smoothly. It was maybe not the most fun way to spend my day, but not that bad. Mostly, my shoulder, hips and back hurt from having to lay still in an awkward position for a while. Other than that, and a little soreness as the anesthetic is wearing off, I'm good. It's certainly a relief to be done with the procedure itself.

I should be getting a phone call between 12 and 4 tomorrow afternoon with the results of my biopsy. I'm feeling pretty confident the tumor will be benign, and at peace with the small chance that it's not. As long as I'm feeling ok, I'm hoping to go to Adoration and Mass tonight, which will make things even better.

Thank you all for your prayers, and special thanks to everyone who called, texted, or sent an email to let me know you were thinking about me today. It means a lot.

I'll let you know what I hear tomorrow!

A New Doctor, At Last!

As many of you know, I'm not a big fan of the rheumatologist I've been seeing for the past two years. I'm grateful that he was able to diagnose me right away, but beyond that, he's been pretty difficult for me to work with, and definitely not the person I want managing my care in the long term. But it's pretty hard to get a new patient appointment with a good rheumatologist, so it's taken me a while to get that figured out. Well, I finally got a recommendation for someone who was actually taking new patients with AS, and, after almost three months of waiting, I was finally able to have an appointment yesterday. Yay!

I'm happy to report that my new doctor was wonderful. When I first checked in at the front desk, the receptionist saw that I was a new patient, and she said "You must have waited for a long time for this appointment! Don't worry, she's definitely worth it." I thought that was a really good sign. :) Anyway, I think I had more honest conversation in this one appointment than I had in two years of appointments at my previous doctor. She actually listened and asked good questions and acted like she cared. 

It was a great appointment, so I was trying to figure out why I walked away with mixed feelings. It took me a while, but I realized that I have still been holding on to some small hope that if I just found the right doctor, there would be some magic answer to my problems, some innovative treatment or new idea that would change everything. (Or maybe a new doctor would change my diagnosis, to something that had easier answers or more hope for relief.) Of course, I've done enough research on my own that I shouldn't have expected that, but I guess the idea was still sitting there in my subconscious. So, when the new doctor said "Yes, you definitely have ankylosing spondylitis," my heart sank a little. And when she went through her recommendations for treatment, they were pretty much identical to what I had been discussing with my previous doctor. Apparently, there was something in me that was hoping for something different. So, that must be why I felt slightly disappointed, even though the doctor was great. But I really am grateful to have found a good doctor that I feel confident working with over the long haul. What a blessing!

Anyway, I didn't get a lot of new information about my disease progression at this appointment. She did one test of spinal mobility that I have never had done before, which showed that I do have some decreased mobility in my lumbar spine, possibly indicating that some fusion is starting there, but really, she just seemed to trust my description of my symptoms as an indication of how things are progressing. She didn't think x-rays were necessary (damage often takes a long time to show up on x-rays anyway). Because of the way AS is affecting my life, and the new symptoms I'm experiencing (shoulder pain too? sure, why not? throw in a knee or two while you're at it!), she's recommending I try another immunosuppressant biologic - Enbrel this time. Maybe she just caught me on a day I was feeling particularly desperate and miserable, but I have decided to go ahead. So, I'm going to start the process of getting that all set up - TB testing, insurance approval, specialty pharmacy set up, injection training, etc. Who knows how long that will take, but I will hopefully be starting Enbrel sometime in the next month or so, and back in to my doctor soon after to check in.

(Of course, this is all assuming that everything is ok with my biopsy next week. Obviously, things could change a lot based on those results, but there's no use worrying about that yet.)

Thank you to all who encouraged me to find a new doctor and to Beth for pointing me in the right direction. I think this is going to make my life a lot better in the coming months and years! :)

Be Not Afraid

In one of the Moms Groups I lead, we are reading a really really great book called Searching for and Maintaining Peace: A Small Treatise on Peace of Heart by Father Jacques Philippe. It's seriously one of the most helpful spiritual books I have ever read, and so much of what he says resonates with me. I can honestly say it has changed my life (or rather, God has used this book to change my life), and I would highly recommend it to anyone interested in a new way of looking at their interior life.

In one section of this book, Father Philippe is outlining some of the things that cause us to lose our peace, and he spends quite a bit of time on the ways that fear can interfere with having true peace. Reading this section, I had a sudden, almost jarring revelation - I am not afraid.

I had never really thought about myself through this lens before, but I realized that I've spent most of my life afraid. Afraid of failing, afraid of losing people and things I care about, afraid of being laughed at or disliked, afraid of losing control. And don't even get me started on my nearly pathological fear of making all sorts of ordinary mistakes. (I've always thought it was a sign of some deep-rooted psychological issues that 11 years of graduation I still have nightmares about messing up college exams.) I certainly remember, when I was first diagnosed with AS, how much fear was a part of my life. I was so afraid of what might happen, of what I might lose along the way.

I don't remember really working on overcoming these fears, but somehow, along this journey, they've just faded away. And not just the health-related ones, but the others as well. I suppose more prayer and a conscious decision to trust God are probably at the core of it, but it's odd to think that this just happened, when I wasn't looking.  For thirteen years of marriage, I have had terrifying thoughts of Mike dying in a car accident or something (especially when he's late coming home from work). But now, even during this season of life when I am more dependent upon him than ever before, I can think of losing him without panic setting in. I know that, no matter what, I would be ok. I love my job, which has led to fear that somehow it won't last. But now, I am able to be grateful for the gift that I have with this position, while trusting that whatever happens in the long term, it will be for the best. And I'm learning to trust that whatever happens with my health, it will be ok. Really.

(Don't get me wrong here - I still struggle with all sorts of nasty negative stuff in my heart. It's just that fear is not as big a factor anymore. Small victories!)

Anyway, it's interesting that I just came to this realization last month, because right now it's certainly being put to the test. Today, I went in for a mammogram to check on a lump I recently found in my breast. The mammogram wasn't conclusive, so they also did an ultrasound. The quick version is this: the lump is, in fact, a tumor of some kind, although it's more likely that it's a benign fibroadenoma than cancer. I have to have a biopsy next Wednesday (11/19) to check. (Has anyone reading this blog had one? I'd love to chat about what to expect.) I will get the results of the biopsy the next day.  So, this was not the "don't worry, it's nothing" result that I had hoped for, but it's probably still nothing. Unfortunately, I have to wait another nine days to find out.

What's weird is, I had an appointment with my doctor over two weeks ago, so I've been thinking about this for a while, and strangely, fear doesn't seem to be part of the equation for me in a big way. This lack of fear might be normal for other, level-headed, not-over-emotional people, but for me - well, this kind of thing would usually send me into a spiral of anxiety, stomach aches, and worst case scenarios. Instead, I feel pretty peaceful about the whole thing and I wasn't even really thinking about it that much. (Well, until about an hour before my appointment when I started to freak out a bit. But still.) The news today wasn't bad, but it also wasn't good. Still, I really don't find myself afraid. I don't like the uncertainty - if it's cancer, I would rather just know right away and get on with it - but I'm not afraid of the outcome.

I suppose I'm happy about this shift in my emotional life, but mostly it just feels strange. Like I'm looking at myself from the outside, asking "Really? You're not freaked out by this? Are you sure?" I can't imagine that fear won't be slipping in now and then over the next 9 days, and more so if the news is bad, but for now, I'll take it.


Do not fear: I am with you. Do not be anxious: I am your God. I will strengthen you, I will help you, I will uphold you with my victorious right hand. - Isaiah 41:10

But It Did Make Me Feel Better!

Last night, I was reading a psychology book that was discussing the two ways people typically deal with negative emotions: We either wallow in them or push them away by distracting ourselves with superficial things, like watching television or eating. 

The book's advice was to try a different approach - to allow, observe, and accept negative emotions, without getting too sucked into them or trying to run away from them. However, I was having a bad pain night, and my immediate reaction was "Hmm... that gives me a good idea." 

So I got out of bed to watch Netflix and eat ice cream.

I think I may have missed the point.

An Invitation

Hello friends,

As many of you know, Saint John Paul II has been a huge influence on my own faith journey, and for many years I have turned to him as my personal patron saint (even before he was officially canonized). Well, next Wednesday, October 22nd, will be his first feast day celebration, and I'm really excited! My birthday was last month, and I didn't really feel like doing anything at the time, but I just decided this is going to count as my birthday celebration. :)

Of course, there ain't no party like a Eucharist party, so I thought the best way to celebrate would be to invite you all to come pray with me next Wednesday evening. Cor Jesu is a weekly time of Eucharistic Adoration and Mass that is huge source of strength and peace in my life right now, and I would love to share it with you. Our presider for the night will be Father Luke Strand, a holy and inspiring priest who has become very important to me over the past few years and also happens to have a huge devotion to JPII. It's sure to be a beautiful, joyful night.

Adoration, with both silence and peaceful praise and worship music, is from 7:00pm to 7:50pm at St. Robert's in Shorewood (2200 E. Capitol Drive). Mass begins at 8:00. Please come join me! We will sit in the front of the church (so I can still see when I'm sitting while everyone else is standing!). Feel free to come any time between 7 and 8, or just come for mass at 8:00. There will be a little reception after mass as well, so we will have time to chat then. Please RSVP to let me know if you're coming so I can save enough seats for everyone. (I happen to have mostly women in my Evite contacts, but husbands and children are definitely welcome as well! And I'm sure I've left people off this invitation - Please feel free to spread the word and invite others!)

An old college friend who was recently ordained, Father Benjamin Maria, will also be offering mass for me on this day from afar. If you can't make it to the Cor Jesu mass in particular, I would love to know you are united with me in prayer by attending mass somewhere else on this day. 

At mass, I would invite you to pray in thanksgiving for the witness of John Paul II, especially his courage and faith in the face of suffering. This October also marks two years since I began this new season of life dealing with ankylosing spondylitis, so I would appreciate your prayers for my own strength and faith on this journey. Most of all, I ask you to pray for the healing of Father Luke, who was recently diagnosed with colon cancer. 

Sorry, I know this was a long explanation for a simple invitation (I'm certainly not known for being succinct!), but this whole idea came to me while I was praying at Cor Jesu last night, and I decided it was something that was really important to me. It would really mean a lot to me if you could join me.

All my love,
Sara

It's All Relative

I have seen lots of posts on Facebook recently from friends who have completed their first half marathon, hiked to the top of a mountain, or biked across a state. I wonder what reaction I would get if I posted my own latest physical achievement?

"Walked 0.6 miles on a flat, paved surface this week!"

Just doesn't have the same ring to it, does it?

After School

As we walk in the door after a day at school and work, Sam asks, "How are you feeling today Mom?"

When I tell him I'm doing okay, he says, with great hope in his voice, "Then maybe you don't have to go straight up to bed today?"

Better

People ask me occasionally if I'm "doing better," and it's hard to know what to say to that, especially without turning my response into a five minute monologue. But I've been thinking about that question a lot, and here's the real answer:

Yes, I am doing better. Not in the way that you mean, or the way that I had hoped for. But it is better.

I still have a rotten disease that touches every minute of every day and may do so for the rest of my life. I still struggle with pain and fatigue and frustration and disappointment and loneliness and a feeling that I'm missing out and letting people down, especially my husband and children. I still have bad days and good days and ok days and really terrible days when I feel desperate and hopeless and just want to stay in bed and cry.

But I am better too.

I am better at evaluating what I can do on a given day and making good choices so that I don't end up making things worse for myself.

I am better at deciding when it's worth pushing myself a bit to do something I really care want to do, even if I pay for it later - And then resolving not to regret it afterwards. Because sometimes it's just worth it.

I am better at accepting a bad day without worrying too much about whether it will turn into a bad week or a bad month.

I am better at enjoying the good days without getting my hopes up that the next day will be good too.

I am better about being clear about what I need and not feeling guilty about it, even if that means I'm laying on the couch while my friends clean up my kitchen.

I am better at dealing with a bad night without tears or anger and still letting my poor husband get some rest. (At least some of the time.)

I am better at letting go of worries about the future, about where I'll be next year, or in 5 years, or 20, and focusing on the joys of this moment in my life.

I am better at facing the morning with gratitude and prayer, rather than whininess and grumbling. (Usually.)

I am better at recognizing that everyone has their own struggles and not presuming that everyone, or even anyone, has got it easier than me.

Also - my feet really are better. Not great, but not as bad as they once were. Things change slowly, so sometimes it's hard to tell, but I do notice little things: I got dressed the other day standing up, rather than sitting down like I've had to do for so long. I have been able to be on my feet long enough to hang laundry on the line outside (using the dryer, especially on beautiful summer days, was driving me crazy!). The pain when my feet first touch the ground in the morning is not so sharp anymore. And I think, on a good day, I look a lot less like Frankenstein's monster when I'm walking around. (If I'm wrong about this, please don't tell me.) So, I am very grateful for all of those things.

And during the summer I have more time to rest, free of the crazy schedule of my work and the kids' school and activities. It's a great luxury, I know, to have summers (mostly) off, and I am having fewer really bad days right now. Whether that's because I'm improving a bit, or because I don't have to push so hard all the time during these glorious summer weeks, I don't know. But I am grateful for that as well.

There's another kind of better - one where our life goes back to normal, and I don't deal with pain all the time, and I have the energy to live the life I was living before all of this. I honestly don't know if that better is coming any time soon, or at all, and I'm working on being ok with that.

But this kind of better is good too.

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Nothing happens automatically in the spiritual life. Joy does not simply happen to us. We have to choose joy and keep choosing it every day. It is a choice based on the knowledge that we belong to God and have found in God our refuge.   - Henri Nouwen

Requesting Your Prayers

Hello friends, 

Sorry it's been a while since I've posted, but I've been trying to keep my head about water while I prepare for next week's Good News Adventure camp that I coordinate. I don't have time to write something thoughtful right now, but I just wanted to put out a quick request for prayers.

I was feeling pretty confident that I could handle everything, until today, when we did our set up and decorating for a few hours. Now, I'm struggling with a lot of pain and feeling really anxious about how I'm going to make it through the week (let alone be joyful and energetic). Between kids, teens, and adult volunteers, there will be over 120 people there, and I am feeling the pressure of all those people counting on me. I'm trying to just trust that God will carry me through, but I would definitely appreciate your prayers. Thank you!

~ Sara

Wheelin'

So... I got a wheelchair.

It took me a long time to get to a place where I was willing to do this (complicated emotions here, for sure), but I finally realized that there are things that I would be able to do if I had a wheelchair that right now I just can't manage on foot. And it would be pretty silly to keep missing out on things that I really could do if I had a better way to get around.  I'm usually pretty rational about stuff like this, but for some reason, this one's really hard for me. But it was the right thing to do, both for me and for my family. It turns out, they really do like me and want to have me around when they go do things. :)

We went to a wonderful non-profit called Katy's Kloset that's basically a giant warehouse of donated medical supplies that really kind and helpful volunteers give away to anyone who needs them. I have to admit, I was a tad awkward and irrational about the whole thing, but with the help of a compassionate husband and an understanding volunteer, we found a wheelchair that works ok for me.

So, on the day we got the chair, it was beautiful outside, and Mike and I went for a walk around our neighborhood together. (We couldn't decide if we could call it "going for a walk together" if I'm not walking. We toyed with Mike "taking me out for a spin," and landed on "going for a stroll." Funny conversation.) I had not realized how much I missed just have a leisurely stroll around the neighborhood. It's been months since I walked any further than I absolutely had to. Just to be outside and wander around was so lovely. (I might have cried a little - a weird mix of happy and sad.)

A few weeks after that, on another nice day, our whole family went to the park together, and I felt so full of joy to be able to go there with them. We even stopped at a playground and I attempted some wheelchair basketball against Sam. I'm pretty terrible, but it made me really happy to be able to play sports with my son, and Sam thought it was great. :)

And, even better, on the kids' spring break, we went to the Shedd Aquarium together, something I could never have done without a wheelchair. It was a perfect day with my family. I have to alternate riding in the wheelchair with getting out to stretch or walk around for a minute or two, because I get pretty achy if I sit for a long time, but it helped so much. It was a long day, and pain still made itself known throughout the trip, but I was there and enjoying life with my kids. What a blessing. Big crowds in tight spaces make rolling around a little challenging at times, and I think there was an unusually large number of elevator problems for one day, but all in all, it was great.

The hardest thing for me was Palm Sunday. Our church begins the Palm Sunday liturgy outside in the parking lot, and there's an opening prayer, blessing of palms, and reading of the Gospel there, followed by a procession around the block, singing and waving our palms. My feet were pretty bad that day, and I knew I couldn't participate on foot. It would seem like using my wheelchair would have been an easy choice, but it was surprisingly hard for me to decide to do that. My sweet husband knew how weird I was feeling about the whole thing, and he understood when I told him I would just stay inside and skip the procession, even though he had wrestled the wheelchair into the car trunk that morning (not an easy task) so that I wouldn't miss out. At the last minute, I realized I was being ridiculous, and I shouldn't miss part of this once-a-year liturgy that I love, just because I felt so awkward about using the wheelchair. So, I did it. I sat in that wheelchair and prayed and sang and rolled around the block and tried to feel happy about the whole thing. Of course, I spent the whole time looking at my feet because I felt so uncomfortable about the whole thing, but at least it's a step, right?  I don't know exactly why this was so hard for me - My church community is truly like family for me, and I have already received so much love and compassion from so many people there.  I guess I just knew that people would notice - that those who haven't heard what is going on with me would ask questions - that a wheelchair made it all so public. And I really just wanted to focus on the liturgy that day, and I wanted everyone else to do the same. On the other hand, how silly would it be to want to hide my suffering on a day that we celebrate God entering into human suffering and transforming it?

So, that's the deal. I have a wheelchair, and I use it sometimes to do things that I'm not able to do without it. Pretty simple, right? Leave it to me to make everything so emotionally complicated! :)

I'm sure I'll get more used to the whole thing over time, but for now, I'm just choosing to be grateful to have a way to get around when I need it, so I can be more present for the people I love.

Day Six...

So, I've pretty much been in bed for the last six days, with a weird  slew of new symptoms alongside  the old favorites. I really don't know what's going on. Inflammation attacking random new body systems? Medication side-effects? A strange bug that my wimpy immune system just can't handle? Body not happy about the cocktail of supplements I just started taking? No idea, really. I'm just going to go with the "don't worry, this will pass" approach for now.

I'm trying not to feel sorry for myself (although spending all your time alone in a dark room is just not good for mental health), and I do find I have learned two important things:

First, my husband is a saint. (Ok, I already knew that one, but this just reaffirms it.) Poor guy is handling everything around here (even more than his usual everything), as well as taking care of me, and he doesn't complain a bit. I'm a lucky girl.

Second (and if I'm ever over-complaining, you can remind me of this), I'll take chronic pain over chronic nausea any day. Hands down.

Also, I have decided that I will feel better tomorrow. So that's good.

Love to you,
Sara

The Only Thing That Matters Right Now

One of my closest friends is losing her husband to brain cancer, and it looks like the end is drawing near.

It's not my story to share, so I won't say anything more except this - nothing else seems to matter right now. My mind and heart are only there, with her.

Please pray for peace and strength for their family.

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Shane passed away peacefully on Saturday evening, with his wife and mother by his side. 

Rest in peace, Shane. You will be greatly missed.

Eternal rest grant unto him, O Lord, and may perpetual light shine upon him. 
May the souls of all the faithful departed, through the mercy of God, rest in peace. Amen.

Uncertainty

I've always been a planner, a scheduler, a maker of clear daily To Do lists (yes, those are all just nice ways of saying I'm a control freak). I've been a really reliable wife, parent, employee, and friend. So one of the things that's most difficult for me in dealing with this illness is the uncertainty that comes along with it.

I don't really know how I'm going to feel on any given day. Yes, there are some clues - If I spent time on my feet the day before, they're likely to be really sensitive the next day, or if I expended a lot of energy on family activities or church or socializing or housework, I'm likely to feel more drained and be dragging through the day. If my back and hips were bad going to sleep, it's more likely they'll be bad in the morning. If I don't sleep much because some kind of pain was keeping me up, my energy level is going to be lower and I'm likely to have a higher pain level. But even with all those things, I still don't really know what to expect. (One night last week, I slept for four solid hours straight and I woke up with a ton of energy. I have no idea why I was able to sleep that night, but I got more done around the house that next day than I had the whole previous week. It was awesome). Sometimes I do really well at work, and sometimes I'm so uncomfortable it's hard to focus and I'm just watching the clock until I can head home and lie down.

So, I have to build a lot of flexibility into my day and into my life, since I never really know what I'll be able to do and what I won't. (Sometimes I wonder what this variability looks like from the outside - One time you see me I'm limping with a cane and looking really run-down, and then a few days later, I'm walking smoothly and looking healthy and happy. It's bizarre, I know.) Mike has been so wonderful about this. I know it's not easy coming home and not knowing whether you'll find a clean house, laundry done, and dinner in the oven, or your wife curled up in bed and crying. It's amazing the way he just rolls with it and adjusts his plans to fit how I'm feeling, without a protest or complaint. My kids are great too - They understand when I just can't do something, even if I had told them I would . It breaks my heart a little when Benjamin says "Mom, do you want to play a game with me, or are you too tired? If you can't, that's ok." But it also makes me feel really good about the compassion he is developing. I'm so blessed to have a life (family, friends, job, other commitments) that can really accommodate my need for flexibility. I feel a lot of compassion for others struggling with chronic illness that don't have this luxury.

There's also a lot of uncertainty about my future. I was thinking about this yesterday: Five years from now, I might look back on this period of time and think "Wow, I could do so much back in 2014! I can't believe that I complained about my pain then. Things are a lot harder now." Or I could be doing a lot better then, and I might look back on this time as the hardest point in my illness, the rough time I had to get through before I started feeling better. Or perhaps things will be much the same in five years. I really have no idea. Maybe I'll be unable to walk next summer, or maybe I'll be in total remission and everything will be fine. Maybe I'll find some treatment that will make a huge difference for me, or maybe even the things that are helping now will stop working over time. My mind wants to settle on one or the other, to be able to predict what's coming and plan accordingly, but I just can't do that.

And maybe that's not such a bad thing. Really, even when we think we have it all figured out, there's a lot of uncertainty in any human life. We can't predict everything that will come our way, and for all of us, I think learning to accept that and just roll with the punches is a good thing. Even more so, as a follower of Jesus, I try to remember that my life is not just about my plans, but about God's plans for me. And God is always full of surprises. Who knows what He has in mind for me next? (Not me, that's for sure.)

So perhaps learning to live with uncertainty is a good thing, especially for a personality like mine. When I have a good day, with less pain or more energy, it feels like such a gift. 

On Easter, I felt great. I have no idea why, because I was in a lot of pain at the Easter Vigil the night before, even with a good dose of pain killers running through my system (why, oh why, are church pews sooo uncomfortable?). We got home late, and I didn't sleep well. But somehow, I felt really good on Easter Sunday. I'm sure Resurrection joy and the beautiful weather had a lot to do with it, but I even wore cute white sandals with my Easter dress (the first time wearing shoes without my orthotics in about six months!), and it didn't even bother my feet that much. We had a really wonderful day with good friends, our church community, and my parents, and I barely noticed my body for much of the day. After my parents left, I even had enough energy to go to the park with my family and enjoy the rest of the sunshine. It was such a wonderful day - my best day in a long time - and I went to bed so happy and grateful. On Monday, I felt awful again - my feet hurt and my whole body ached and I really just wanted to spend the whole day in bed. But I think I'm making progress on dealing with this uncertainty, because I didn't feel surprised or upset Monday morning - I just felt really grateful for the wonderful day on Easter.

So, yes, my life is more uncertain now and sometimes that drives me crazy, but I think I'm a better person because of this uncertainty. And maybe I'm learning a little about what it really means to trust God.

Thank you all for your love and friendship! I appreciate you.

Love,
Sara

Trust in the LORD with all your heart; lean not on your own understanding. - Proverbs 3:5

Why I Haven't Posted In A While

When I first started writing emails to update folks about my health, I resolved never to write an update when I was depressed or frustrated or scared or in a lot of pain. I thought this was important for two reasons:

First, I am severely tempted to complain all the time, about everything, and I don't want to use this communication as a way to whine. (Side note: This is not a new illness-related development. I've always had a strong temptation towards complaining, even when I had no real problems to complain about. One of my most transformative Lents ever was the year I gave up all complaining - to other people and even to myself. It really did change my life. I certainly still struggle with this, but that practice really opened my eyes to how damaging this habit could be - to myself and to the people around me.) Sharing my struggles openly with people who love me is good for my soul; complaining is not. Sometimes it's tricky to figure out the difference, but I definitely don't want this blog to just be an outlet for my complaints.

Also, I'm a very emotional person. I always have been this way (thanks Durako genes!), and I'm definitely struggling to keep a handle on negative emotions these days. When I'm feeling really upset, I'm not terribly rational and I have a tendency to exaggerate all of my problems in my own head. (The pain management book I read called this kind of thinking "catastrophizing," which sounds about right.) I'm learning that these negative emotions are real, and I may not be able to turn them off completely, but I can also choose to let these emotions come and go and try not to feed them or dwell in them any longer than I need to. (Can you tell I was reading a Buddhist book recently?) Anyway, what I think and say in highly emotional moments is definitely not something I want to be writing, sharing, and remembering for the future.

So, because of these two particular struggles of mine, I decided a long time ago to always wait until I was in a good place emotionally before I would write and share anything. (I have slipped up on this from time to time, and I still feel a bit of regret when I look at those posts. But I'm just learning and moving on. I trust that you all still love me anyway and don't think I'm too much of a melodramatic whiner.)

That said, I haven't posted for over a month... So, what does that tell you? :)

To be honest, it's been another rough span of time, both physically and emotionally, but I feel like I'm coming out of it a bit now. Lent was hard and heavy in a lot of ways, but Easter is sooo good for my soul. Physically, things are not much different and I have some more medical decision-making to do sometime soon, but I'm working on pulling out of sadness and self-absorption and returning to gratitude and generosity and joy. Thank you to all the kind friends that have reached out to me and offered love and support. My life is so much better because of you!

Anyway, I want to write a few more posts soon, but I just wanted to let you all know that I'm still here, and I'll share some more updates and thoughts in the next week or two.

Happy It's-Still-Easter everyone! Alleluia!

~ Sara

Do not lose your inner peace for anything whatsoever, even if your whole world seems upset. If you find that you have wandered away from the shelter of God, lead your heart back to Him quietly and simply. - St. Francis de Sales

Blessings

I'm trying to train myself to really look for the blessings that have come through this struggle. It doesn't come naturally to me, but I think I'm getting better, at least on good days, at seeing the silver linings. Here are two:

One blessing I really notice in everyday life is that I have actually become a less anxious person. Most of you know that I've always been a worrier and I tend to get stressed out pretty easily. Strangely enough, I think I worry a lot less now, and little things don't really stress me out anymore. It's actually kind-of surprising to look at a situation and realize that in the past, I would have been feeling super anxious about it, but now, it doesn't phase me. It feels good to be less stressed and less uptight about little things. I doubt I'm at risk of becoming too complacent in life, so I think being more laid-back is a good thing for me.

Also, when I was first diagnosed with AS, I struggled a lot with fear - fear of the future, fear of pain, fear of what I might lose to this disease. And I can't say that I'm completely over that (I definitely have my down moments), but I am thankful that I really don't feel a lot of fear for the future most of the time. I know there's only so much I can do to control this, and actually, that's a bit freeing. In some ways, I'm grateful that I experienced certain problems early on, like iritis and the decreased mobility caused by my foot and hip problems. Instead of spending my time in fear, worrying about what life would be like if I wasn't able to walk well anymore, I've experienced a taste of that possibility already, figured out how to adjust, and realized life can still be pretty great anyway, even if I end up living with some limitations. I'm part of several online communities for people with AS, and sometimes it's hard to hear what some people's lives are like as this disease progresses. But again, there's really know way to know exactly how things will progress with me, and I'm feeling much more confident that life will be good, no matter what.

So, my fear and anxiety are down, for sure, and I consider that a great blessing. However, to be perfectly honest, I'm writing this at a time that I'm still really struggling with feelings of self-pity, loneliness, and sadness, so your prayers for that would be appreciated. I'm trusting God will help me through those things as well, in time.

All my love,
Sara

Can any of you by worrying add a moment to your lifespan? - Luke 12:25

Peace I leave with you; my peace I give to you... Do not let your hearts be troubled or afraid. - John 14:27

On Living with Chronic Illness

Two posts in three days - Unusual for me, I know! When I used to send emails with my updates, I tried to be more reserved about how much I wrote. Now I'm realizing that not that many people really look at this blog - So I don't worry so much about over-sharing. I figure that if you get bored with this, you just won't come back. :)

I'm  spending the day on the couch after making a bad choice yesterday that I'm really paying for now.  (I got engrossed in a good conversation with some coworkers, but unfortunately, everyone was standing up, and I just couldn't bring myself to pull away and sit down. Looks like ten minutes of that is going to take a couple days of recovery.) I'm trying to find ways to be "productive" even when I can't move around much, so I thought I'd write a bit more here. I'm not sure this really counts as productive, but it's something!

Anyway, I've found a lot of support in an online group for folks with AS, and it's somehow really comforting to know that other people have some of the same feelings and experiences as me. And I don't have to worry about over-complaining, because everyone else is a mess as well!

Someone there recently referenced a couple of articles that I really identified with. So, I thought I would share them here, for those of you who want to understand a little bit more about what it's like to be living with a chronic illness, particularly one that is invisible to the outside world.

The Challenges of Living with Invisible Pain or Illness

I am fortunate that I have been treated with great kindness by so many people around me, so not all of this applies to me. But "The Dilemma of How to Present to the Outside World" is spot on. I am pretty well in control of how I present myself even when I'm feeling really bad or in a lot of pain (years of practice), and it's a strange thing to have to decide whether to "act healthy" or "act sick." I pretty much always opt for putting on the happy face (to everyone except my husband and kids), but sometimes I think that gives a false impression of what's really going on. On the other hand, smiling is definitely better for my own soul than going around looking miserable all the time, so I think it's a good policy in general.

The Extra Burdens Faced by Young People with Chronic Illness (with super depressing photos of young people looking really really sad. I promise I don't look like that most of the time.)

Again, not everything in here is true of me (so glad I don't have to worry about #3 or #4), but #5 and #7 are pretty accurate. It's a very strange thing to spend time in doctors' offices where everyone is much older (and sicker looking) than you. Not that illness is fun at any time of life, but knowing that I have many many years ahead of me (God willing) to deal with this, especially when it feels like everyone my age is still able to do so much, is a bit hard. On the other hand, my age of diagnosis is very typical for AS, so I'm able to talk to others in the same boat online, which is nice. And while I am still young-ish, the timing of this whole thing is really pretty good. I'm glad it didn't happen earlier, when I was in college or when my kids were still young. The life we have built for ourselves is actually one that accommodates this illness pretty well, and I am grateful for that.

*********************************************************************************

I share these articles not so much because I need your understanding and support (I know I already have that), but because there is probably someone else in your life that is suffering but doesn't feel able to reach out and share what's going on with them. I'm suddenly very aware of all the people in my life that deal with chronic illness of one kind or another, and how little I really understood what their world is like. May I suggest that you think about your friends, family, and coworkers, and ask yourself if there's someone out there who could use a little support or comfort? For myself, I know that it means a lot to me whenever someone asks me how I'm doing and shows that they really want to hear the answer - Maybe there's someone else in your life who would appreciate you reaching out to them as well?

All my love,
Sara

Random Updates

Hello all. Thank you to everyone who saw my last (semi-desperate) post asking for prayers. I appreciate your support! I am happy to say that I survived that weekend, although I did spend quite a lot of time in bed recovering. :) I thought I'd give a more detailed update now, in case you're wondering.

On the medical side of things, here's what's going on with me:

Nothing new, really. I'm still having a lot of trouble with my feet, and that only seems to improve with just not standing or walking, which is a pretty tricky to keep up in everyday life. I pretty much just walk on my tiptoes all the time now. One friend said I walk like a ballerina, which I think is a rather generous way to describe my clunky hobble, but I'll take it. :) I'll certainly be glad when all the snow melts and walking is not so perilous. My hip and SI pain are up and down, as are my general fatigue and other random aches and pains. I don't think things are getting worse or better in general. I just have to be very careful not to push my body too far, or I really pay for it for a day or two afterwards. (I'm spending today on the couch for sure!)

I'm never really sure if the medications I take are helping, but I got a bit of encouragement in that department recently. I had a cold that was bad enough that I needed to delay my immune-suppressant injection for a week (I'm not supposed to do that one if I'm fighting an infection of any kind), and I really noticed my back getting a lot worse over that time. Most of the time now, my feet, hip, and SI are the worst pain, and my back is really not that bad. Sometimes I forget how intense my back pain used to be, so this was a good reminder and affirmation that something I'm doing actually does help. It's not uncommon in AS for a particular treatment to be effective for axial symptoms (spinal) but not helpful for peripheral symptoms (other joints), and it seems like this is the case with the Humira for me. So, while I wish it helped with the other pain and the general fatigue and achiness, I'm grateful that it does seem to have an effect on the back pain. Hopefully this means it is also reducing inflammation in my spine and reducing the risk of fusion, which is a big part of why I'm on it in the first place.

Since I seem to have hit a stand-still with the traditional medical approach, I thought it was time to try some other options, so I'm trying acupuncture right now. (Thanks to a generous and thoughtful friend who gave me the encouragement and a gift certificate to get me started.) I'm still a bit of a skeptic, but frankly, I figure just about anything is worth a shot at this point. And it's really wonderful to have a caring, compassionate person listen to you describe your issues. Laying quietly in a calm, peaceful room is really nice as well, although it would probably be more relaxing if she wasn't sticking little needles in everywhere. :)  I even let her stick a needle in the bottom of my foot, which gives you a sign of how open/desperate I am. I'm even taking the Chinese herbs she recommended (which Mike and I jokingly refer to as "fairy dust") - I figure if I'm going to try it, I might as well try the whole package, right? I haven't noticed any difference at this point, after five treatments, but based on her suggestion I'm going to give it one more try before calling it quits. Who knows, maybe sixth time's a charm?

I've been continuing to work on better pain management strategies. For some reason, even acknowledging that I have a chronic pain condition was an important step for me. I guess it helps me recognize that learning to deal with pain is a big part of living with this disease, and that it's a journey I'll probably be on for the rest of my life. So, it's definitely worth approaching in a thoughtful way. I wish I had been more intentional about learning the pain management strategies they teach you for childbirth, as I'm sure it would come in handy now. Some of what I'm reading seems super obvious (deep breathing, relaxation techniques, etc), but actually applying those things in a bad pain moment is still hard for me. Even more than that though, it's been really good for me to analyze my emotional and cognitive responses to pain and work on changing the ones that aren't helpful. For example, I often respond to more intense pain with thinking "No, no, no, NO! I can't take this anymore! It's going to be a terrible night and a terrible week and a terrible life and everything is just terrible, terrible, terrible!" - It turns out that's not really a very helpful response. :) I'm not sure why I needed a book to tell me that, but I guess I did. I'm working on channeling both my thoughts and my emotional reactions in a more positive way, and I do notice it does make a difference in my experience of pain. I'm still not very good at applying all of this when I'm in a bad flare, but I think I'm taking steps in the right direction.

Anyway, that's a little bit about what's going with me in the health department. I want to write about the rest, the emotional and spiritual side of everything, but that takes more thought and I'm not quite ready to put that together. For now, I'll just say that I was in a really good place over the last few months (December, January, most of February), but I'm struggling a bit more right now, both physically and emotionally. However, having had a chunk of time where I felt more hopeful and joyful is really helpful even now, when I don't quite feel that way. I know that it's possible to be in that good place, and I'm fighting hard to get there again. I'm really grateful for the discipline of Lent to help me with this, and even more, for the grace of God to pull me through when my own efforts fall short.

Thank you all, as always, for your love and support. I am so blessed!

~ Sara

Come to me, all who labor and are heavy burdened, and I will give you rest. - Matthew 11:28

Prayer Request

Well, it's been quite a while, and I have a bunch of half-written posts sitting here waiting for me to finish. But I think I'm going to skip over all of those for now and just make a little request -

Can you please pray for me today? It's been a really rough week, and I don't feel well at all today. But we have Sam's basketball game this morning, followed by a speaking engagement all afternoon. Then I'm leading a program at church tomorrow morning, and we're hosting a party at our house Sunday night. Yipes! I could use a little supernatural help to get through this weekend.

Please pray that God gives me the strength to be a good mom, public speaker, children's minister, and hostess. And that I can approach all of it with a generous and joyful heart. He's carried me through many a hard day before, so I'm just trusting he'll carry me through this one as well. :)

Thank you friends!

How Are You?

Hello all,

It's been a few months, so I figure it's about time for another update. Spoiler: Things are fine, and I really have nothing new to report. But don't worry - I can make "nothing new" into a really long and detailed email anyway. :)  That's why you love me, right?

I get asked all the time "How are you?" I know we all ask each other this question a lot, in casual interactions and serious conversations alike, but I think I get this question more now than I did before, and I never really know what to say. I think most of the time people are asking this question in passing; it's more like a standard part of the greeting than a real search for information. We all just say "Good" or "I'm fine" most of the time, right? I don't want to make the mistake of interpreting anyone's casual greeting as an invitation to pour my heart out (pretty sure I've done that before. Awkward.) But I also know that sometimes people are asking because they really want to know, and I don't want to just blow them off either. As you can tell from my long-winded and perhaps overly-revealing email updates, I really don't have a problem sharing my heart, as well as all my mixed-up rambling thoughts, with anyone and everyone who wants to hear them. And I really appreciate the compassion that is behind this question, the love and friendship that people are trying to express by asking how I'm doing. I think we should come up with some kind of social code (pulling on your right ear maybe?) which allows us to differentiate between the casual "how are you?" and the "I really want to hear how you're doing, and I'm ready to listen to the answer" kind. I'm actually working on this myself -  Trying to ask this question to people in a way that says "You don't have to just say you're good. I'd love to hear the honest answer, whatever it is." I think this will help me be a better friend and hopefully open an opportunity for other people to share their life with me more openly.

Anyway, if you really want to know how I'm doing, please feel free to ask. But maybe just give me some kind of signal so I know you're looking for more than a one word answer. It also helps to ask something more specific - "How are you feeling today, physically?" or "How is your health doing overall these days?" or "How's your heart" or "How are you feeling about all of this right now?" Those questions are actually easier to answer honestly, since I know what you're really asking about. (Also, I'm much more likely to give you a real answer if I'm sitting down. Sadly, I'm often cutting conversations short so that I can find a seat. Sorry about that. It actually bothers me a lot to have to do this. I'm working on just saying "Can we continue this conversation sitting down?" but sometimes that's just not convenient and I just really hope I don't come across as rude.)

So, How am I?

I'm good.

(Wouldn't it be ironic if I left it at that, after my very long preamble? But you all know I'm never brief, in writing at least, so here's the more complete answer...)

If you mean, "Physically, how is your body? What's the latest on your disease, treatments, and progress?" here's the answer:

In that department, I don't have a lot to share. I'd say things are pretty much stable. I don't feel like I'm getting worse, but I also don't know if I'm getting better overall. It's also really hard to know at this point, because I've modified my life so much that daily life looks very different than it did six months ago. I would say that my days are easier now than they were this fall (the low point for me), but I think that this is mostly because I'm more realistic about what I can and can't do (and Mike is working hard to manage everything that I can't). Sometimes I make the mistake of thinking "I'm having a good day, I could probably just go to the store really quick so Mike doesn't have to," and then I discover that this wasn't such a good idea after all. So, it's hard to say whether I've made any real progress overall.

- I'm also realizing that it's not helpful for me to obsess over whether "I'm getting better." For a while, every time I had a good day or two, I would get all excited that things were improving, and then I'd be devastated when I had another bad day. Not a good pattern for me. So, I know I need to keep an eye on my symptoms for the sake of providing good information to my doctors and getting the best treatment, but I'm trying to let go of constantly trying to figure out if I'm getting better. It's better for me to just think about good days and bad days, and just accept them as they come.

 - That said, I think my back is better than it was before I started more serious treatment, so I do think the Humira and my newer medication (Celebrex - another one advertised by old men throwing footballs to their grandsons) are making a difference in my axial symptoms (inflammation in the spine). It seems like these medications have been less effective with my peripheral symptoms (inflammation elsewhere), as my SI and hip have pretty bad flares sometimes, and my feet are just generally in bad shape without showing signs of improving. (This is actually pretty common - to have medication be somewhat effective with axial symptoms but have no effect on peripheral symptoms, or vice versa.) I've had a few other little things crop up recently, and I can't tell whether they're parts of the disease or medication side effects or just random weird things that have nothing to do with anything, but I'm trying not to let them bother me. 

- I'm now on all of the medications that are considered most effective for AS, plus a topical NSAID I use on my feet, so there's not a whole lot "more" to do in that realm. We're considering trying a different biologic or increasing my dosage of the Celebrex, but there are downsides to that too. I'm accepting that this is a balancing act, and we may or may not find a combination of medications that makes a huge difference. 

- Someone asked me recently "So, are you in a lot of pain all the time?" and I thought I should clarify for all of you - The answer is No. I am not in a lot of pain every day. I'm sorry if I made you think that. I am moderately uncomfortable pretty much all of the time, although on good days, if I get really absorbed in something, I won't notice pain for a while. On harder days, I am in some pain all day. I only have occasional times, maybe once or twice a week, often at night, where I have what might be called intense pain, the kind that's still hard for me to deal with. But that's not the norm for me. Just in case you were wondering. Talking with other people with AS, I know that I'm still on the mild side of things, and I am grateful that my pain levels are pretty manageable.

- I'm also working on taking a different attitude towards pain. I'm just now starting to figure this out, but something a woman mentioned in my online AS community has really gotten me thinking about this. When I have more intense pain coming on, I have a tendency to get a little panicky and just feel really anxious and distressed. This is totally not helpful. Can I develop a different approach to pain, one that observes pain and accepts it, without the strong negative emotional reaction? I'm getting a book about managing chronic pain that deals with this, and I'm feeling hopeful that this might make a good long-term difference in my life. My first little experiments with approaching pain with a different attitude have been good, so we'll see if I can get better at this. (Although if anyone tries to stick a giant needle in my foot again, I'll probably hide under the table.)

- I'm looking into finding a new rheumatologist, so if you know anyone in Milwaukee that sees a rheumatologist that they really like, I'd be happy to hear recommendations. Would prefer if the doctor didn't use the term "God forbid" to refer to all sorts of problems that I then develop. Compassion and listening skills a nice bonus, but I would settle for not wanting to cry with frustration every time I leave an appointment. I'm also considering trying out some of the alternative therapies that loving friends have suggested to me (why not, right?). Feel free to pass along those suggestions as well.

Anyway, that's enough for now. I'll write about the more important part of the answer to the "How are you?" question sometime soon. (I'm learning what's going on in my heart is actually more important than what's going on in my body.) But really, I'm good. 

Thank you all so much for your support and friendship. I am truly blessed.

Love,

Sara

PS: This prayer has been really helpful to me recently. I share in case it might be helpful to one of you as well:

Do not look forward in fear to the changes in life;
rather, look to them with full hope that as they arise,
God, whose very own you are,
will lead you safely through all things;
and when you cannot stand it,
God will carry you in His arms.

Do not fear what may happen tomorrow;
the same understanding Father who cares for
you today will take care of you then and every day.

He will either shield you from suffering
or will give you unfailing strength to bear it.
Be at peace.

- Saint Francis De Sales