Boring Update

Hello all,

It's been a while since I've updated everyone on what's going on with my health (a fact which my Grandpa politely pointed out to me when we visited earlier this month), so I thought I'd give you all an update. It's not particularly interesting (chronic illness gets old really fast), but I know there are some folks who want to know this stuff, so here it is:

- I was on a new biologic, Enbrel, for 6 months. Unfortunately, it didn't seem to make a significant difference in my health. In fact, during that time, I had two more bouts of iritis (the first since my serious case in April 2013). I was able to treat both cases myself with the steroid drops I have on hand. The first case cleared up pretty quickly, the second lasted about a month, but never got super red or very painful. So, they weren't a really big deal, but still not a great sign for my overall disease activity. Also, the Enbrel was a weekly injection, and the morning-after headaches and fatigue never improved over the months of treatment, so I'm kind of glad to be done with that. I felt like one day a week was pretty much shot because of these side effects. In addition, a few other things (one concerning blood test result, a sore that just won't heal) made my doctor a little concerned that my body might not be tolerating this particular medication very well. So, I'm done with that one.

- We've decided to try another biologic - Cimzia. This is another drug in the same category as the other two I've tried (Humira, Enbrel), but each one is targeted slightly differently, so it's possible this one will help even when the others haven't. It's always fun getting a new specialty medicine set up (and by fun I mean many hours on the phone with doctors, pharmacists, nurses, financial assistance hotlines, etc), but I'm all set now, so I will be starting next week. This one has a loading dose of two injections every two weeks for the first six weeks, and then it will just be two injections once a month after that. I'm not particularly excited to do two injections each time (sticking another needle in right after you finish the first one seems a little unfair), but after I get past the loading dose, it will be nice to only have to do shots once a month. So, even if I don't feel great the next day, that will only be one day a month I'll be out, rather than four.

- I'm holding on to hope that Cimzia will make a difference, but that hope is somewhat muted by my previous experiences. Maybe I'll land on a miracle drug one of these days, but I'm also realistic in knowing that there are some people for whom none of these TNF-blockers make a significant difference, and I may be one of those. I'm working on being ok with that.

- Other than the medication change, not much is new. I continue to have back, hip, and SI pain that varies day to day and is particularly bad at night or when I'm not careful with my body. My feet are definitely better than they were a year ago, but I've reached a bit of a plateau and can't seem to move from "at least I can walk into and out of buildings without limping" to something closer to normal. But still - I can do some things I couldn't when my feet were at their worse. I even did a mile long walk while on vacation with my family. It was pretty painful, and the rest of the day and evening was rough, but I could do it, and it was worth it. It's not ideal, but manageable.

- Back in October, I started to develop pain in one shoulder, which I hoped was just an injury of some kind, but it then moved into both shoulders and hung around for months. Turns out AS is just going after one more joint. For a while I was feeling pretty frustrated with some of the limitations shoulder pain creates, and I really was hoping that I wouldn't stay in a situation that meant folding laundry or stirring a thick batter were painful for me. Fortunately, both shoulders have started to get better over the past two months, and now they're just a mild annoyance some of the time. (I certainly miss being able to lay on my side and prop myself up with one elbow, but I can live without that, now that I can sleep on my side again, as long as I position my upper body just right.)

- I also had my 6 month follow-up ultrasound to check on the benign tumor we found in December. It hasn't grown or changed significantly in that time, so all is well. As long as I'm happy to leave it there (which I am - I'll pass on unnecessary surgery any day), I just have to get it checked once a year now, which is great.

So... I think that's all I have to share on the medical front. I have a whole list of more reflective posts I intend to write some day, but I'm not sure when I'll get to them.  Summer is wonderful, and I'm enjoying just spending time with the my kids and having a little break from work, school, and the rest of our busy life.

Thank you to all the wonderful friends and family who make my life great.

~ Sara

"Rejoice in the Lord always; again I will say, rejoice!" - Philippians 4:4

What's in Benjamin's Heart

The boys and I were having a conversation over lunch the other day, and Sam was talking about some types of middle school humor that he doesn't really like.

Then Benjamin jumped in with this: "And I don't like it when people say 'Step on a crack, break your mother's back'..." 

(Pause, while I wait for him to explain.)

"...Because that's not true. That's not why your back hurts." 

Then he looked down at the table and started to cry. 

Poor sweet child. I love him a lot.

Update and Request for Prayers

Thank you to everyone who responded to my previous post about whether I should continue blogging. I got a lot of really thoughtful answers that gave me good things to consider. I'm sorry I did not reply to all of you directly - Please know that I did read and appreciate your responses, even if I didn't quite get around to responding to tell you that.

After giving it much thought and prayer, I have decided to keep writing here. I had been hoping to find the time to write more about why I came to that decision, but I just haven't gotten there yet. So, I thought I'd better write something to let you know I'm still here. Besides, I could really use some prayers right now.

The update on my physical health is this: I'm on week six of Enbrel, and I have still not noticed a big change in either direction. The injections are not so bad, and the morning-after headache/fatigue is manageable, so that's all fine. However, I'm having a hard time judging whether it's actually helping or not:

I feel like my feet might be slightly better, although they have been getting better slowly (very very slowly) for about a year now, so it's hard to know whether the Enbrel is helping with that. And maybe my back and hip pain hasn't been quite as intense? It's all so fluid and subjective that it's really hard to judge.

On the other hand, my shoulders have been really hurting, which is a new development. I started having pain in my left shoulder this fall, and I thought maybe I had just injured it. But then the right shoulder started hurting too, and they've both been getting slowly worse since November. So... that's a bit discouraging. So far, I haven't had a joint start hurting and then just stop hurting again, so I can't help thinking this is going to be another long-term thing. It's been difficult to get used to, because things that didn't use to be hard are now painful - folding laundry, pulling on socks, mixing dough, laying on my side- and I'm not particularly excited about the prospect of giving up anything else. (Also, I can't imagine asking Mike to take on any more of the housework when he does so much already.) Besides, there are certain things, like holding babies and giving hugs, that are good for my heart but apparently bad for my shoulders. On the other hand, I know that with my back and then again with my feet, it just took some time to get adjusted to my limitations. By now, I'm so used to them that it's second nature to sit while I take a shower or bring my back pillow and heating pad with me everywhere I go. So, I'm hoping, if the shoulder thing sticks around, I'll get used to it and make some adjustments in how I do things, so that eventually it won't feel as inconvenient and frustrating as it does right now.

I also had a mild bout of iritis last week, for the first time since the major episode in 2013. (I've had little bits of eye inflammation here and there, but they have always cleared up on their own, and they never got painful.) Fortunately, I asked the doctor to prescribe extra steroid drops the last time around, so I would have them available in the future, just in case. So, I've been able to skip the expensive doctor's appointments and just use the steroid drops myself. My eye seems to be clearing up ok, so I think it will all be fine. But again - it's a bit discouraging to have that problem come back again after so long. Perhaps instead I should focus on being grateful that I went a year and half without a reoccurrence. I'll work on that. :)

Anyway, that's what's going on with the physical stuff.

As for the rest, I would like to ask for your prayers over the next few days. I am speaking at our Four-Parish Lenten Mission next Monday, Tuesday, and Wednesday night, and I am really stressing out about it. I'm not exactly sure why I agreed to do this, when public speaking is so absolutely nerve-wracking for me. (Actually, I do know - God twisted my arm several months ago and I was foolish enough to say Yes.) I'm used to being nervous for pretty much everything I do, but frankly, this is way worse than usual, and I'm just not handling it well this time. Besides the normal anxiety about speaking (and trying to figure out what in the world I want to say!), the last week has been a bit harder physically, and I'm getting nervous about how I'll be feeling on those nights. I would appreciate your prayers for a little extra divine help to keep me feeling healthy(ish) when I speak. I figure if God wants me doing this, He'll need to carry me through! :)

Thank you!

What I've Been Thinking About

After the holidays and winter break and the little platelet issue, things have settled back into normal around here. I did my first Enbrel injection on January 13th and the second last Tuesday, and I am happy to report that I have not had any negative reaction. The shot is much less painful than the Humira, and the day-after headache has not been nearly so intense either. So, that's all good. I will be doing those injections weekly and paying attention to my symptoms to see if it makes any difference. (It usually takes 6 weeks or more to notice results, so I'm not thinking about that too much yet.)

In the meantime, I have had a lot of thoughts going through my head recently. There's one thing in particular I've been ruminating on, so I thought I would share it here and see if anyone has any advice or insight:

When I was first diagnosed with AS, I was sending email updates to my closest family and friends, just to let them know what was going on. Everything was so new and scary for me, and I desperately needed support and understanding. As time went on though, I started to feel weird about sending these long, rambling emails to a growing list of people - As if I was begging for attention by pouring all of this into people's inboxes. So, I moved over to the blog, thinking that people could either read this or not, depending on how interested they were, and I wouldn't be forcing my way into anyone's day.

Now that more time has passed, I'm feeling unsure about the blog as well. After more than two years on this journey, there's no end in sight, and I have come to accept that it's quite possible, even likely, that this will be a lifelong thing. Symptoms will probably be better sometimes and worse sometimes. There will be scary moments and times when it's really hard, and maybe, hopefully, times when it gets easier, but life will keep rolling on, regardless. Given this reality, I wonder - does it make sense to keep on talking about this, to keep writing and reflecting and sharing in this public way?

Here are a few things I'm contemplating:

- I know that I have a temptation towards attention-seeking, and this illness certainly brings that out. I have heard a lot of people who are sick or struggling say that they don't want anyone to feel sorry for them, but, to be perfectly honest, I guess sometimes I kind-of do want people to feel sorry for me.  As silly as it sounds, I suppose it does make me feel better when people notice how hard things are and feel bad that I have to deal with all of this. Living with chronic illness and chronic pain is certainly the loneliest experience of my life so far, and sometimes I find myself feeling really desperate to be seen and understood. But I don't want to be a person who is always seeking attention for herself, trying to get people to notice and listen and offer sympathy. Instead, I want to be a person who is generously turned outward - ready to notice and listen and offer help to others. I wonder if having this blog is a healthy venue for openness and self-reflection, or just an opportunity to seek attention?

- I am also tempted to make my whole life about this illness - to think about it, worry about it, cry about it, complain about it. Obviously, this is part of my life, and it's not going away anytime soon. But would I do better to give it less attention? Would it be better for my own happiness to stop giving myself an opportunity to talk about it? If I didn't think about what I might write, would that take away one more opportunity to obsess?

On the other hand, there are some good reasons to keep writing and sharing:

- First, I know there are some people who really do care and want to hear what's going on with me, and this blog is a good venue for sharing myself with them. I have always been a better communicator in writing than in person, and I'm more likely to have the courage for full honesty when I'm staring at a computer screen than when I'm looking at someone's face. So, in that way, maybe the blog helps my friends and family know and love me better - And that's a good thing, right?

- Second, I do believe that the world would be better if people were open and honest with their struggles, rather than just pretending everything is fine. I know that I really appreciate hearing the experiences of others with chronic illness - It helps me to not feel so alone. If what I write could do that for someone else who is struggling, then posting here seems like a good thing. Also, if something I write helps one of you better understand what it's like to live with chronic illness, maybe that is something you'll be able to use to understand and support someone else in your life who is struggling in some way. If so, that also seems worthwhile.

- Third, I know that God is at work in this whole thing. I don't always see it, but I believe with my whole heart that He intends to bring good from this, both for me and for the people around me. Maybe part of that work depends on me sharing my journey in this way. If so, I want to leave Him that opportunity.

So, all that said - Here's an example of how this works in my mind:

I recently read a New Yorker article written by a young woman about her experiences dealing with an auto-immune disease. It was very interesting and insightful, and it captured really well a few questions I have personally wrestled with. I came across the article on Facebook, and I thought about clicking the share button. But then I started wondering - Do I really think people would be interested in this article, or would I just be posting this to get attention, to draw people's sympathy?  Should I post a comment about what I though about it, or what parts particularly resonated with me, or would that just be begging for a response when I really don't need one? After going back and forth for a while, I ended up not doing anything with the article, except emailing it to Mike (who is contractually obligated to care about all my thoughts and feelings).

Also, my shoulders have been starting to hurt over the past few months. It's pretty annoying and makes it especially difficult to sleep (since I have always slept on my side). I'm still trying to figure out how to work my life around shoulder problems, and frankly, it's just making me mad. I kind-of want to tell people that my shoulders hurt. Except I suppose there's really no good reason to do so. Do I just want people to feel bad that my shoulders hurt? Clearly, Mike needs to know so that he can do stuff for me that I can't do anymore, but really - does anyone else? Is it really helpful to whine and complain about each new joint pain? (Of course, I'm telling you all now, so there goes that.)

As you can see, I clearly need to figure this out. So, I'm posting this reflection here (and yes, I realize the irony of that as well) to ask - Honestly, what do you think? Should I keep blogging? Should I share stuff on Facebook? Should I talk about it with people when they ask how I am? Or would I be better off just giving less thought and attention to this part of my life? Would it lead to a healthier and happier life if I just... stopped?

I would truly appreciate your perspective as I try to decide what do do from here on out. Post a comment or send me an email, and let me know what you think!

All Clear

I met with the hematologist again on Wednesday, and everything is fine.

This doctor seems to really understand what it's like to be patient, because the first thing he said when he came in the door was "Don't worry, it's all good news."  None of that long preamble while you're sitting there waiting for them to go to the point. Much appreciated.

So, basically he looked at my blood and said that nothing looked like cancer, and that it is most likely an immune response related to my AS.  My platelet count also went back up a bit again, which is good news. The technical diagnosis is ITP - idiopathic thrombocytopenic purpura, which basically just means a low platelet count for an unknown reason, thought to be caused by the immune system destroying platelets.  However, my counts aren't low enough to be dangerous or even to cause any symptoms, so no treatment is necessary. He said we should just treat my current level of platelets as normal for me, as a person with an auto-immune disease, and my other doctors can keep an eye on it in the future. He thinks that I should be fine to start Enbrel, even though it can also lower platelet counts.

So, that's a relief. I have an appointment with my rheumatologist today, so hopefully I'll get the all clear from her and start Enbrel next week.

Thanks for the prayers and support everyone!

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!