Making Progress

Hello all,

I wanted to give you a few positive updates since my last email, which I guess was a bit of a downer. Sorry about that. :) 

- I had some follow-up blood work to check on my liver, and most of the liver function tests were back into the normal range. So, most likely my liver was just having trouble processing the sulfasalazine, and all is well now. We'll just continue to keep an eye on it, especially whenever we adjust medications. I wasn't too worried about this, but it's nice to know it's ok now.

- I went back to the podiatrist on November 8th. After seeing how bad things had gotten with my feet, he recommended doing steroid injections in both feet right away. While steroids are not a great long-term treatment option, I needed something to change, so I was happy to do this. Unfortunately, sticking giant needles into a part of your body that has a lot of active inflammation can make things worse for a bit, so I spent about five days barely able to walk. Fortunately, I seem to have turned the corner on that, and the last couple of days have been much better. I'm not sure if my feet are better than before the injections, but all it takes is a few days of worse pain to make you appreciate when things are more manageable. :)  The steroids are supposed to help for as much as a month, so it may continue to get better. I'm still trying to be really careful not to be on my feet too much, but I can manage about five minutes at a time now, which is great. I'm feeling hopeful that maybe I've turned a corner on this and they'll get better over time.

- I'm making a lot of progress in making things work with my limitations. I managed to plan a children's activity for last Sunday that I could do almost entirely sitting down, and it was a lot of fun and went really well. I came home and slept for two hours afterwards, but I was really happy that I could do it.  I was also able to work at the food pantry last weekend, as long as I stuck to the sitting-down job at the registration table. I bought a stool for the kitchen so I can sit while I cook at the stove, and I even swallowed my pride and got a chair for the shower, which makes getting ready in the morning much easier. I hung out with some really friendly old ladies at water aerobics yesterday, and they gave me lots of good advice and some needed perspective. :)  I'm feeling less frustrated with needing to rest and better able to just work with what I can do. I'm behind on everything, but getting better at not being stressed out about it. And I'm really trying to focus on being a good wife and mother, regardless of what's going on, and I think it may actually be working. Anyway, lots of good things. 

I have wonderful friends taking good care of me and my family, and I've even been able to reach out and help some friends in small ways myself. I'm seeing more and more the beauty of the Body of Christ.

As Father Javier said in his homily on Sunday - Suffering is not the opposite of happiness. I think I'm finally starting to understand that. Life is good.

Thank you for all of your love and support. I am so blessed by the wonderful people in my life.

Love,

Sara

One Year Later

Hello all,

It was one year ago yesterday that I was diagnosed with Ankylosing Spondylitis. It's been quite a year! I thought I'd send a little update to all of you today, since this anniversary is making me feel rather reflective. Besides, it was mid-August the last time I wrote all of you, so there are a few small updates to give anyway. Be warned, this email is rather long and maybe more detailed than some of you need to hear. I promise I won't be disappointed if you just skim over it for the highlights. :)

On the medical side of things, here's where everything stands:

- I have been on the Humira for about four months now. Side effects are still minimal (just a few days of headache after each shot), which is great, but I haven't noticed any significant improvement over this time. I continue to struggle with steady back, hip, and SI pain, along some other random joint and enthesis pains that come and go, as well as a lot of general fatigue and just not feeling well. Some things seem to be a bit better (my back maybe?), while others (my hips and SI) are causing more pain than before. I will see my rheumatologist next month to see if he thinks I should continue Humira any longer (if insurance even will approve a continuation), or if maybe we should try a different biologic to see if something else might be more effective.

- My feet are really my biggest issue right now. I have trouble standing or walking for very long, and this is becoming rather limiting. I am seeing a podiatrist now, and I had custom orthotic inserts for my shoes made. I've gotten used to wearing these all the time, which is supposed to correct any mechanical problems with the way I stand and walk, as well as provide very sturdy support for my feet. They haven't seemed to make a difference so far, but it's possible I might need more time to notice improvement. I'll also be back at the podiatrist next week to talk about what else we can try. On the upside, we continue to make little modifications in our home and changes in the way I do things to make this easier, and those steps have been helpful. I also have a handicapped parking tag now, which was a bit of an ego blow for me but does make things easier on the rare occasions when I feel like I need to use it.

- I started a new medication about three weeks ago - sulfasalazine, which is a DMARD (disease-modifying anti-rheumatic drug), the last category of AS medication that I was not already taking. However, when I went in on Tuesday for routine blood work to monitor how my body is responding to this new medication, we found that I had elevated levels of liver enzymes. While liver problems are not common with sulfasalazine, they do happen, and since this medication is the only major change since my last blood work, it's most likely that the sulfasalizine is the culprit. So, I've had to discontinue using it. I'll be back for new blood tests in two weeks to see if my liver function has returned to normal. Most likely, it will all be fine. We're not too worried about it, but it's a bit of a bummer because having problems with liver function while on this medication can limit future medication options as well. I hadn't noticed a significant difference in my pain levels over this time with the sulfa, and it did make me a bit nauseous, so I wasn't too sad about being taken off it. However, now being off it for a few days, I'm wondering if it was helping somewhat, because my pain levels have been up a bit. But things vary a lot day to day based on a lot of factors, so it's hard to tell if stopping the medication was the cause. Either way, it's a done deal, and I won't be using it again.

- No more problems with my eyes at all. I am very thankful for that.

So, that's the medical update. As for the rest:

To be perfectly honest, this is hard. It's hard not knowing how I'll feel on any given day and what I'll be able to do. It's hard having to plan my days so carefully, thinking about how much I'll have to stand and when I can rest. It's hard stepping back from things I really value and love to do.  It's hard feeling lousy while knowing that I look just fine. It's hard feeling isolated at times, especially as we cut back on social activities and other commitments. It's hard not knowing what the future will bring. It's hard to be faced with so many temptations - to self-pity, jealousy, and most of all, selfishness. It's hard to deal with the reality of chronic pain. It's hard letting go of my ideas of the kind of person I want to be and the kind of life I want to have.

So, yeah. This is hard. But a lot of things in life are hard, and, as a friend once told me, "everybody's got something." So, this just happens to be my something. And I am getting better at it. I'm also learning that just because something is hard, that doesn't mean that it can't also be good. It is good to let go of pride, to recognize my own weakness and sins. It is good to be forced to seek God's plan for me, rather than just my own plan. It is good to humbly rely on others. It is good to struggle against selfishness, to have so many opportunities to really sacrifice for others. It's good to deflate my ego, to realize that I'm not nearly as wise, holy, or strong as I once thought. It is good to have to be more intentional about how I use my time and energy, to really consider what is most important to me. It is good to become more compassionate towards the suffering of others. There is a lot of good to be found here, and I'm doing my best to keep my eyes on those things.

I think I have entered a new stage in dealing with this whole thing, where my focus is more on learning to accept my limitations and starting to make changes in our life that will make things easier. While I still remain hopeful that we will find some combination of treatments that will reduce my pain and help me feel better (or that my disease will spontaneously go into remission - which does happen with AS sometimes, I've learned), I think that it's also good to work on accepting this new reality and building a full, joyful, generous life in a new way. Mike and I have been talking a lot about what changes we need to make to accommodate our new reality, and we're considering a lot of things, both big and small. I have a hard time letting go of my ideas of who I want to be and what I want my life to be like, but I'm trying to be attentive to what new plans God might have for me. He's always full of surprises!  After a really rough spell two weeks ago, I am also working on being more intentional about how I use my energy, so that I place a priority on being present for my kids and for others God is calling me to serve, even if that means letting go of certain things that I want to do or feel like I should do.  (There's a lot less cooking and cleaning happening around here these days, that's for sure!) 

I also realize that I am experiencing this struggle in the midst of a life that has been ridiculously, abundantly blessed:

- I'm walking this journey with a companion who is amazing and faithful in every way. Mike is working so hard and sacrificing so much for me and for our family, and I know he does it all willingly with great love and joy. I am so grateful to have a best friend who I can pour my heart out to, over and over, who never gets tired of listening to me cry and always encourages me to be a better person in the midst of it. (Next time you see Mike, give him a big hug and tell him how great he is. And maybe invite him out for a beer or something and ask him how he's doing. He's a serious extrovert stuck home with tired, achy me a whole lot, and this disease affects him as much as it does me.)

- My kids are growing so much through this whole experience. I am so glad they are old enough to understand (and not need me to pick them up anymore!). They are so compassionate and kind. A wise friend recently asked me look for the fruits God is bringing out of this suffering, and the way Sam and Benjamin have grown in virtue in the last year is certainly one of them. Also, they are hilarious and sweet and interesting and full of joy. What a gift.

- I am thankful for the wonderful friends I have in my life. So many people have reached out to me and offered their support and love, and I am really grateful for that. Many of you sent cards, letters, and prayers for my birthday, and I want you to know that this really made a huge impact on me. I know I am well loved!

- My faith has grown and changed so much in the last year. God is teaching me a lot. Sometimes I wish I could learn these lessons without hobbling around like an old lady, but I'm glad He's teaching me just the same.

- I am grateful for a lot of other things too: medical insurance, chocolate, a flexible part-time job, quiet time at Eucharistic Adoration, hugs, restful days at home, the mass, wise words from wise people... I am working on spending more time in gratitude, because really, I am just surrounded by blessings.

I debate about sharing all of these reflections with you, for fear of being whiny or preachy or just ridiculously long-winded. But I am always encouraging people to be open about their struggles so that we can all know, love, and support each other more fully. So, I figure I'd better practice what I preach. Please know that I am well aware that each of you has struggles of your own, some of which may be weighing heavily on you as well. I would be honored to share your struggles and pains (and joys too, of course!), as I invite you to share mine.

For those of you that are praying for me, please keep it up. I would certainly love a treatment breakthrough that would improve my physical health, and I'm not going to stop you praying for that. But I think I am in most need of God's grace in my emotional and spiritual health - So, if you would pray for me to be open to God's will, to learn to rely on Him in daily life, and to become a more selfless person, that would be awesome. 

I am also actively seeking wisdom right now, from anywhere I can find it, so if you have a scripture passage, quote, book, experience, or advice that you think might be helpful to me, I'd love to hear it. 

God speaks to me through music, and these lyrics from "How Can I Keep From Singing" really struck me recently:

No storm can shake my inmost calm

While to that rock I'm clinging;

Since Christ is Lord of heaven and earth,

How can I keep from singing?

I'm still working on living my day to day life that way, but, at least in my best moments, I'm still singing. :) 

Anyway, that's the latest from my end. I really appreciate all of your love and support. You are pretty great.

With love,

Sara

Struggling to Adjust

Hello all,

It's been about a month since I wrote you last, so I thought I'd give you all a little update, although there's no big news to report.

I have now done 4 injections of Humira. I'm starting to get more used to the injections now - After my last shot, Mike said "you're getting much braver!" (in exactly the same tone of voice he would use with Benjamin if he was pulling out a splinter). So, I guess that's a good sign. :) I got smarter after the first two shots and now have been doing them right before going to bed at night, which allows me to sleep through the worst of the headache. The headache fades to being pretty mild after the first couple of days, so that's definitely manageable, and I have no other side effects, which is great.

I haven't noticed any improvement yet, but I'm trying to remain hopeful. I had an appointment with my rheumatologist after my third shot, and he said we would wait until 3 months of treatment to determine whether Humira is worth continuing or not. From others with AS that I've talked to online, it seems that there are plenty of people who don't notice a difference for 6 weeks or more, until something suddenly changes after the fifth or sixth shot. So, we shall wait and see.

Unfortunately, while my back, hips, and legs have stayed about the same over the past few months, my feet seem to just keep on getting worse and worse. They're actually my biggest problem right now, more than back or hips or anything else, and they are limiting me in a way I haven't experienced before. I've been doing everything I can to try to heal (heat, ice, stretching, shoe inserts, etc), other than staying off my feet altogether, which is next to impossible with our life and not so great for the rest of my joints anyway. None of that seems to be helping, so I am going to a podiatrist this week, and I'm hoping that he'll be able to help me. 

To be honest, I've been struggling a bit in the past month or so. You would think I'd be getting used to this by now, but I'm feeling very frustrated and discouraged by the foot problems, mostly because it really limits what I can do, more than my back ever did. Standing, walking, and driving are all pretty painful at the moment, so there are a lot of times I just have to say No to things now, and I guess I'm still getting used to that. It's still hard for me to judge what I can and can't do on any given day, and I'm not always smart enough to stop before I push it too far and end up paying for it.  Anyway, I'm sure I'll get better at that, but right now it's frustrating and disappointing. (And man, the first time I had to crawl up my stairs was a little blow to my ego - the first time I felt truly handicapped. But humility is a virtue I've gotta work on anyway, so I'm just getting a little boost in that direction!) My kids are super sweet and understanding, which I greatly appreciate, but it breaks my heart a little every time I have to tell them that I'm just not able to do something that we had been hoping to do together. And I really really hate not being able to stand during mass anymore! So, those things are hard for me right now. On the upside, Mike is trying to convince me to get a cane, preferably a super cool one with a dragon on the handle or something. This would be a good excuse to learn some kind of cane-swinging martial arts and impress my children. See - silver linings!

Anyway, I know that eventually I will either start feeling better or I'll just get better adjusted to some of my limitations, so I'm just trying to be patient and hopeful through all of this. Some days I am more successful than others. :)  For those who have been praying for me, I would appreciate your prayers for some effective treatment for my foot pain, and more importantly, that I will remain hopeful and grateful and generous, on both good days and difficult ones. I am constantly fighting a temptation toward both selfishness and self-pity, and I could use some grace to keep me focused on being joyful and generous, especially when I'm not feeling great. And if you could pray for my husband and my kids, that would also be good. They are amazing and compassionate and forgiving and patient and so comforting to me - but I also know this is hard on them and they could use some extra grace too. Thank you for your prayers!

Well, that's the latest from me. I'll let you know if anything major changes, but feel free to ask if you have questions or just want to know how I'm doing.

I am incredibly grateful to all of you who have been such good friends through all of this. I am truly blessed to have such wonderful people around me. Thank you!

With love,

Sara

All is Well

Hello all,

Thank you for your continued prayers and support. I am so blessed to have such amazing family and friends!

I wanted to let you all know that my doctor OKed me to try another dose of Humira, which I did this evening (under Mike's very watchful eye). All went smoothly, and I had no reaction (besides a headache, which is completely normal). So, it looks like we're in the clear to keep using Humira and see if I have any improvement over the next few weeks or months. Thanks be to God!

I'm super relieved, as I was a bit anxious before doing this second shot. And now I can get back to being hopeful that this will help!

Thanks for caring. :) I'll keep you posted.

Love,

Sara

Humira Issues

Hello all,

Thank you for all of your kinds words and prayers in the past few weeks! It really means a lot to me. I wanted to give you a quick update and another prayer request.

I was able to do my first injection of Humira last Tuesday evening, and unfortunately, I had a bit of a reaction to the medication. About a minute after injecting, my blood pressure suddenly dropped and I felt very dizzy, light-headed, and nauseous. Fortunately, I did have a nurse there with me, and I had set up the appointment for when Mike was home (and we had sent the kids upstairs, thank goodness). So, I had help and someone monitoring me. It was a bit scary for a few minutes, as this was not an expected reaction, and it came on very fast. However, I only felt really bad for about 15 minutes and I was able to start moving around after about an hour. After an evening resting, I felt ok when I went to bed and back to normal the next morning. I've had no problems since then, except for a pretty constant mild headache, which is a common side effect, and certainly manageable.

Unfortunately, since my initial reaction was not in the range of normal side effects (even the rare ones), I may not be able to take Humira again. (I've spent more time than I would like on the phone to the drug company, nurse line, and my doctor, since my reaction had to be officially reported, but I'm starting to get used to the time suck this whole thing is.) My doctor still needs to talk more to the drug company, but his initial reaction is that this sounds more like an allergic reaction and that I should not take Humira again.

The whole thing is a bit frustrating, because I've spent months getting this set up, and I've gotten my hopes up that this medication might help me feel better. Personally, I'm hoping they say I can try another shot next week, maybe with a nurse there again to monitor me if necessary. But obviously, they want to be careful, so I'm not sure if that will happen. 

Anyway, this is a kind-of a bummer for me, but I'm trying to just be patient and peaceful about the whole thing. If you've been praying for me, please just pray that everyone - Mike and I, my doctor, and the medical folks at the drug company - will have the wisdom to make the right decision about trying again, whichever way that leads us. And that if I do have another injection, that I'll have no reaction and will be able to proceed with the medication. And if you want to dream big, that I'll start feeling amazing soon. :)

On the upside, we had a great family vacation last week, to Sikeston, Missouri for the 4th of July with my extended family and then a two day side trip to Memphis, which was also great fun. Mike and I are definitely learning better how to take care of my health while traveling, which is really good. Sometimes my limitations are a bit frustrating to me, but we had such a great time, and I am so grateful for all the fun we had as a family. And now that we're back in Milwaukee, summer days at home with my kids just make my heart happy. I am a lucky girl!

Anyway, that's the latest. Love to you all!

Excited to Stick a Giant Needle in My Leg

Hello all,

I just wanted to give you all a quick update since my email from yesterdayl. I've been on the phone with a whole bunch of different people today, and I actually am going to be able to start my Humira tomorrow. Everyone was super helpful, from the drug company to the specialty pharmacy to the nurse who is coming to teach me. (I know there's big money in this, which may be why everyone's been so great, but I just really appreciate it after having the opposite experience whenever dealing with insurance.) Anyway, they're shipping the medication now, and I will have it before noon tomorrow and the nurse is coming at 5:30 to teach me to do my first injection.

If you want to say a little prayer tomorrow, that all goes smoothly and I don't have any immediate reactions or side effects (especially as we leave for our trip to Missouri and Tennessee), that would be much appreciated.

Thank you!

~ Sara

Boring Stuff about Medications

Hello all,

I wanted to let you all know that I got a letter from my insurance company last week telling me that my appeal was successful and I am now approved for starting the new medication my doctor prescribed - Humira. Praise God! Even though I've had reservations about taking a drug like this, Mike and I believe that this is the right choice for me at this point, and I am feeling hopeful that this could make a significant difference in how I feel. It's nice to at least have something to try!

It's still quite a process, as I have to apply for financial assistance from the drug company, schedule a nurse to come teach me how to use it, set up deliveries with a specialty pharmacy, etc. So, it looks like I won't be able to begin until I get back from our 4th of July trip. But hopefully I'll get started some time the week of July 8th. Finally!

Some of you have asked for more details about this medication, so if you are interested in all the detail, read on. If not, just know that I'm relieved and even a bit excited to give this a try.

- Humira is very new drug developed for rheumatoid arthritis, ankylosing spondylitis, and a few other related conditions. (It's only available in name brand and is very expensive, which is why it was hard to get approval from insurance.) For some people, it makes a life-changing difference, for others, a smaller impact, and for some, no difference at all. It's a "biologic" type drug, specifically a TNF blocker - which inhibits the body's production of tumor necrosis factor, which is part of the inflammatory response that is out of whack in my body because of my AS.

- So, basically, it's a specific type of immune suppressant - inhibiting my immune system so it will stop attacking my joints, eyes, and tendons. The unfortunate side effect of this is that my immune system will be less able to fight off other infections - from common things like cold or flu to more serious things like TB or weird bacterial or fungal infections. So, I'll need to be a little more cautious about trying to avoid catching anything, and if I do get an infection of any kind, I'll have to suspend the Humira and watch things very closely. (I might have to become an obsessive hand-sanitizer user during the winter months! And Mike will likely have to handle taking care of the kids if they get sick, while I stay away.) The possible immediate side effects like headaches, nausea, and injection site reactions are usually not very severe, so I'm not too worried about those.

- A nurse will come teach me how to do my first injection, and then I'll be giving myself an injection in my stomach or thighs every other week. I'm not super excited about giving myself shots, but I've never had too big a problem with needles, and I know I can handle it. Definitely worth it if this helps.

- Some people start to see results within a few weeks, and most see improvement after 6 weeks. If nothing improves after 3 months, you stop treatment. I'm hoping I'll be lucky and start feeling a lot better really quickly! One can hope, right? 

So, that's the deal. Now that we've made the decision and got approved, I'm impatient to get going and to see if this will help. I've had some bad days recently and have been feeling a little frustrated with my limitations, so I'm glad to have the hope that I might start feeling better, maybe even a lot better.

If you would like to pray for me, I have two specific requests: First, that this drug helps me feel better. Second, that, regardless of what happens with my physical health, God will give me the strength to remain hopeful and to continue to serve others (rather than giving in to the temptation to become too self-focused). I know I need God's help with the emotional part of this just as much as the physical!

I'll keep you posted. Maybe my next email will be telling you all that I'm feeling a lot better already! :)

Thank you for all of your love and support! I appreciate you.

Updates and VBS

Hello all,

I've had a couple of people ask me recently for an update about my health stuff, so I guess that means it's been too long since I last wrote an email to you all. I don't have a lot to report at the moment, which is both good and bad, but here's the latest:

- The inflammation in my eye is totally cleared up, and while I think I still have a slightly blurred spot in that eye, my brain has already compensated for that and I don't notice it at all anymore. So, all is well there. I just have to pay close attention to my eyes from now on, and I know now to move very quickly at the slightest sign of a problem. I'm hoping I'll be one of the lucky ones who avoids reoccurring problems with iritis.

- When I wrote last, my insurance company had denied approval for Humira, but I was starting the appeal process and was hoping to have a decision on that within a week or two. Obviously, I greatly overestimated the speed of this whole bureaucratic process. :) Since then I received notice that I was denied an expedited appeal process, and that my appeal would be reviewed within 15 to 20 business days. About a week after that, I got a letter that I needed to sign to give my consent to the appeal process, and then another similar form another week later. So... I have no idea if they even started the appeal until they received those forms back. Anyway, the long and short of it is that I'm still waiting to see if I'll get approved for Humira, or if I need to try something else. I'm trying to be patient and appreciate the fact that I have health insurance and modern medicine in general. 

- I did stop my crazy diet, as I actually felt worse over time, rather than better. But one big blessing that came out of that period of such a restrictive diet - I really really enjoy food right now! Everything tastes amazing. Simple pleasures. :)

- Other than that, things are about the same. Some good days, some bad days. I was hoping the heel problems might go away quickly, but that doesn't seem to be happening right now. Mike and I have joked for a long time now that I'm a "lemon" (you know, a car that has problem after problem and just turns out to be defective), so we'll just add that to my lemon list. Fortunately, I'm confident my family will not be trading me in for a new, more functional model anytime soon. :)

As most of you know, I am leading Vacation Bible School this week, which is quite a huge and exhausting job. I was a bit worried about how my body would handle the whole thing, but I'm doing pretty well so far. (Thanks to my wonderful mother who has been here helping, and two great friends who have brought us dinner so I wouldn't have to cook at the end of the day, and of course, my amazing husband and children who have been handling everything around the house so I can just get VBS stuff done and then rest.) For those who have been praying for me, I would appreciate some prayers for my strength for the rest of the week, that my body will hold out through three more days of jumping, dancing, singing, running around, and being constantly energetic and enthusiastic. After Friday I can crash, so I'm asking God to just carry me through until then! :)

Even though it's been hard on me physically, VBS is just what my heart needed. Being surrounded by so much joy and energy is good for the soul. I may be physically exhausted, but I certainly don't have any time or energy to brood or feel sorry for myself - So that's a good thing! And I think it's hilarious that God is using the simple themes of VBS to speak to me too. (Tomorrow morning, I'll be preaching to the kids about how we need to give up worry and instead turn to God in prayer when we're facing hard times... Yes Lord, I get the irony - I'll work on it.) And I get a million sweet little hugs every day. There's nothing better than that.

Anyway, that's me right now. Thanks for all of your prayers and support! You all have made a big difference to me.

Eyes, Medications, and Thankfulness

Hello all,

A few of you have asked for an update on what's been going on with my health stuff, so here's the latest:

As far as my eye goes, things are looking good. I was back at the eye doctor last Friday (I'll be very glad when I'm done driving there every Friday after work!), and my inflammation continues to decrease. There is still some inflammation present (and a slight blurriness in that eye), but it's definitely responding to the steroid drops, which is great. I'm down to using them just once a day now. He said my case was pretty severe, so he's being very slow in tapering off the steroids, but hopefully I'll be done in about two weeks. And after that I'll just be keeping a very careful watch on my eyes from now on.

I met with another rheumatologist in the same practice last Monday for a second opinion, which was very helpful. The PA he works with was wonderful, and between the two of them I got a comprehensive re-exam and an opportunity to talk through the whole thing from another perspective. This doctor affirmed my original diagnosis (no doubt on that one) and agreed with Dr. Pasha (my rheumatologist) that my increased symptoms, particularly the iritis, indicate that more aggressive treatment is necessary at this point. The one point that he seemed to diverge from Dr. Pasha on was methotrexate (the drug Dr. Pasha is pushing and thinks insurance will require I take, the one I really really don't want to be on). When I explained my reasons for not wanting to use this drug, he agreed with me and said that if he was in my position, he wouldn't take it either because of the risks. So, it was nice to have some affirmation of our decision about this, and he didn't think that this would be the issue with insurance. That part was a relief. It was a great appointment, and I really got to talk out some of the stuff I've been reading about with someone who really listened. The bad news is that this practice does not allow you to switch doctors, so I won't be able to continue seeing this doctor in the long term. (Serious bummer.) I could go look for a doctor in another practice, but at this point, I don't think it's a good time to "start over" with a new doctor, so I'm going to stick with Dr. Pasha for now.

Unfortunately, we did find out that my health insurance did deny coverage for Humira, the drug we want to use. However, Dr. Pasha is writing an appeal for me, so it's possible that may change.  The PA I saw said that insurance almost always denies Humira at first, because it's so expensive, but that often they will approve it if you persist. Fortunately, the insurance is not saying I need to try methotrexate first, but that I need to try a different (less-expensive) biologic first - Enbrel. So, worst case scenario is that I try Enbrel first, for a period of maybe 3-6 months. It's something I'm willing to do (has a similar safety profile to Humira), and both doctors say it's not as good as Humira but could still have good results for me. On the other hand, it has not been studied for iritis, so we have strong evidence to explain to the insurance company why Humira is the right option for me. Right now I'm just in the "wait and see" phase, but I'm hoping to find out in the next week what we're going to be able to do. I've already done all the screenings you need before starting a biologic (TB tests and tons of blood work to check for other existing infections or various other problems), so once we figure out the insurance thing, I'll hopefully be able to get started pretty quickly. Glad I'm not afraid of needles! (I promise not to make you watch, Dad.)

Other than that, things are good. I'm very relieved that I'm not going to have to take methotrexate, so that's a huge weight off my shoulders. I've had some bad days in the last couple of weeks, but I've had some good ones too, and overall, I'm feeling at peace with the whole thing. I'm still doing my crazy no-starch diet (which is just as unpleasant as I thought it would be), but not noticing any difference at this point. I'm going to give it a bit more time before I throw in the towel.

My husband is wonderful, wonderful, wonderful. I am so blessed to be married to a man who will wake up in the middle of the night and massage my back and distract me for hours at a time, even when he's totally exhausted. And my kids are sweet and understanding and compassionate, and I have amazing parents and in-laws and siblings and moms groups and friends and coworkers and faith communities. Sometimes life is hard, but it's also very very good.

I am using this song as a prayer every morning when I wake up:

In the Lord I'll be ever thankful

In the Lord I will rejoice

Look to God, do not be afraid

Lift up your voices, the Lord is near

Lift up your voices, the Lord is near

That pretty much sums it up for me.

Love to you all,

Next Steps

Hello all,

Here's the latest update. This is pretty detailed because there are some people on this list (Mom and Dad...) that want to know all this stuff, and it helps not to have to explain it over and over. Sorry if it's more detail than is necessary for you. Feel free to skim or ignore. :)

I went back to the eye doctor again yesterday, and things are still improving. I do still have significant inflammation, but it's better than last visit, and as long as the inflammation continues to decrease, that's fine. In some ways, I'm glad to hear that I still have inflammation present, because my vision in that eye is still somewhat blurry. So, if that inflammation had completely cleared, that blurriness would be permanent damage. As it is, my vision could still clear up as the inflammation leaves. But really, where I'm at now is not a big deal. I can see just fine and barely notice the blurriness.I don't have any pain or light sensitivity anymore. I just have to make sure to take good care of my other eye. :)   While there is a limit to how long it's safe to use the steroids in my eyes, I still have some time before I get to that point, and hopefully it will all be cleared up by then. I'll be back to the eye doctor again next week.

As for the rest, I had an appointment with my rheumatologist on Friday, which had some positives and negatives. Starting with the good: I have not lost any range of motion in my back, neck, or anywhere else, which is a very good thing. The labs I have to do to keep an eye on various possible complications of the NSAID I'm on right now all came out fine, so no problems there. 

The pain in my heels is plantar fasciitis, which is what I thought. It's actually a pretty common problem, usually from overuse or injury, but in my case it's just another place where my immune system seems to be going nuts and attacking all sorts of things it has no business attacking.  For me, the heel pain is really problematic, because the way to relieve that is to stay off my feet. But spending too much time laying around and not being active is bad for my other joints, so I'm kind-of in a pickle with dealing with this one.

I continue to read and research a lot, so I knew going into this appointment that the iritis and heel pain were not good signs. However, it was still a bit hard to hear from my rheumatologist, who treats lots of people with AS, that he is surprised and concerned with the quick progress of my disease. Unfortunately, I seem to be in the group of folks who have a more aggressive course of disease, which is not great for the long-term prognosis. 

I went into this appointment having decided that I would go ahead and begin a TNF-blocker (mostly likely Humira or Remicade) if my doctor recommended it. Mike and I have been thinking and praying about it a lot, and what I finally came to was looking at this through the lens of service. I believe I have a particular vocation, in my family, my church, and my world, and I want to be able to live this vocation well. If these drugs are what I need to be able to continue serving my family and my church and all the other people God has put in my life, then that's what I want to do. I take the side effects and risks seriously, but they are all "things that might happen," while the stuff I am dealing with right now is "things that definitely are happening." I know the way that my symptoms are affecting me as a wife, mother, friend, and minister of the church right now, and it's not something I am willing to let continue if I have another option.

Unfortunately, there's a possible hitch in this plan. My doctor informed me that it's unlikely that our insurance will approve paying for a (very expensive) biologic, when I have not yet tried methotrexate, which is a less expensive drug that's a step up from the NSAID I'm taking now. Methotrexate is a drug that I really really do not want to take because of some of the serious risks involved. So, we are left with a bit of a conundrum. We can still go ahead and submit for insurance approval for a biologic, but if I am rejected, we'll have to really discern what to do next. 

Also, I'm trying a crazy diet that has shown some success with limiting the inflammation in AS, in one doctor's research plus lots of anecdotal evidence (Hey, if some guy on the internet says it, it must be true!). It's based on one theory of the disease which says that AS folks have a particular microbe (Klebsiella) in their gut, which their body has decided to attack, causing the overblown immune response leading to all this inflammation. So, the theory goes, if you starve this microbe, it stops multiplying and your immune response calms down. Anyway, it's a strict no starch diet, which basically means no grain of any kind, no dairy, no sugar, no beans and no starchy fruit or vegetables like potatoes, bananas, etc. (It's actually quite complicated, because all sorts of things have starch that you wouldn't expect, but that's the basics.) So, pretty much just fruits, vegetables, meats and eggs. It's pretty much the opposite of what this carb-loving, sugar-craving, mostly vegetarian woman would like to eat. And I'm skeptical, but also desperate, so I figure it's worth a try. :)

Thank you to everyone who has been praying for me. If you want to be specific, on the practical side of things, please pray that insurance approves the drugs without a hassle. And on the emotional/spiritual end, that I will be able to see God clearly through all of this. He's teaching me a lot right now, and I want to make sure I'm open to His voice.

Anyway, that's the latest. I am meeting with another doctor next Monday for a second opinion, and then we'll decide where to go from here. I'll keep you posted.

Love,

Sara 

Good News!

Hello all,

Thank you so much for all of the prayers, emails and offers of help in response to my last email. I feel so blessed to have such wonderful friends and family supporting me.

I am happy to say that I have good news to report! I was back at the eye doctor on Friday, and he said the inflammation is definitely clearing up in response to the steroid drops. Even better, the place where my iris had become attached to my lens seems to be improving too. We can't tell for sure quite yet, but it's possible I will have little to no vision loss. Thank goodness! 

So, now I get to stop using the drops that dilate my eye, which I am very glad to be done with. The light sensitivity, headaches, and difficulty driving that came with having one pupil constantly dilated should start fading soon, and the blurry vision should improve too, though a bit more slowly. I'll be back at the eye doctor again next week to see how it's looking, but he's hopeful that in a few weeks, it will be all cleared up with no lasting damage. Also, if this becomes a reoccurring problem (which it does for some people with AS), I now have a standing prescription for steroid eye drops that I can start at the first sign of a problem, so hopefully things won't get this bad again.

Anyway, I am very relieved about all of this, and I am going to try to remember not to take my vision for granted again! 

I'll be back at my rheumatologist next Friday, discussing next options for treatment, and we'll see where we go from here. I'll keep you posted. This whole episode shook me up a bit, but I'm doing a lot better now, thanks especially to good friends, my wonderful family (especially my wise, supportive, patient, and generous husband), and getting refocused on prayer.

This morning I led a retreat for the kids at my parish who are preparing for First Communion. I had been worried about whether I was going to be able to go through with the event, but I decided to go ahead, because it's such a valuable experience for these families. I am so glad I did. It was a really beautiful morning, and I believe God gave me some extra grace to make it through. Perhaps the timing of this retreat was God's way of saying - "Stop feeling sorry for yourself. I've still got lots of work for you to do!" :)

I'm excited to celebrate the First Communions of two of our godchildren today. God is good.

Love to you all,

Sara

In Which I Try to Stay Positive But Am Completely Freaking Out

Hello all,

As a few of you have pointed out, it's been a while since I've sent a health update, so I thought I'd let you know where things stand with my dinosaur disease:

First, what's been going on for the past few months: Basically, not a lot of change. I've tried a few different more powerful NSAID medications and not had much luck with finding anything that makes a significant difference in my pain level. On one medication I noticed my hips and legs getting significantly worse, so at least I know that the others were helping somewhat. It's hard to judge, since pain levels are ultimately pretty subjective, but in some ways, I think I've actually been feeling worse. I'd say my back pain has been about the same, but my hips and legs are becoming more of an issue, and now I have on-and-off heel pain, which is a new challenge. Fortunately, I haven't had any stomach issues at all (they're common with long-term NSAID use), which I am very grateful for.

Other good news: I got an elliptical machine for Christmas and have been exercising almost every day since then. Staying active is really important for my joints, and I do notice a difference when I exercise, especially on days when I'm particularly achy and really don't want to move. I'm more active now than I've been for years! So, that's one big positive that's come out of this whole thing. 

The latest: So, I have a fun new problem to deal with. Over this past weekend, I started having some pain, redness, and blurred vision in my right eye. It continued through today, so I went to an eye doctor this morning, who diagnosed me with "fairly severe" iritis (inflammation of the iris). This is fairly common among people with ankylosing spondylitis (ironically, I listed this symtom on the "things that I'm grateful I don't have to deal with" section of my first email). Basically, it's just another problem of systemic inflammation attacking a different part of my body. About a third of people with AS will get iritis at least once, and for many people it can become a chronic problem. Looks like I'm in the lucky third. :)  You have to be very careful with iritis because it can lead to permanent vision damage pretty quickly. I am now putting in eye drops every hour that dilate my pupil to prevent damage, as well as steroid drops to reduce the inflammation. As long as this helps, I'll just go back to the eye doctor on Friday to make sure everything is ok and see how much longer I need to use the steroid drops. I also have refills of the prescription available, so if this becomes a chronic issue, I'll be able to start steroid drops at the first sign of a problem.

The positives:

- While it was moderately painful for a while, the pain was already less by this morning, and it's really only a mild ache now. Sometimes iritis can be very very painful for people, and I'm grateful this was not the case for me.

- I knew that this could be serious, so I didn't put off going to the doctor. I'm glad I had my AS diagnosis already, or I might have brushed it off for a few more days and it could have been much worse.

- My eye is actually not very red at all, which I'm grateful for. The pictures of iritis are often really terrible looking, and I'm glad I don't look like a zombie or anything (well, except for that my pupils are currently two different sizes, which looks a little creepy).

The downside:

- The eye doctor said that, because of the inflammation, my iris had become stuck to my lens. It's possible that I will have some permanent damage to my eye, even after the inflammation clears up. He said it will very likely improve from where it is now, but I may have slightly blurred vision in my right eye from now on. It's also possible that it will be fine within a few weeks. We'll just have to wait and see.

- This is not a good sign for the overall progress of my disease. Iritis is usually associated with more severe cases of AS, because it means that I'm having more wide-spread inflammation issues, beyond my joints. While pain and fatigue levels seem a little hard to pinpoint, this a more clear sign that inflammation really is progressing and spreading.

Also, I can't decide whether to put this point in the category of "positives" or "downsides," but this symptom really confirms the AS diagnosis even more. So, any doubt that I was holding onto about this diagnosis is pretty much erased now. It's probably a good thing to just accept it and let go of any lingering thoughts (or hopes) that maybe the doctor got it wrong. This gives me greater clarity moving forward.

I have an appointment with my rheumatologist next week, and we'll be talking about what to do next. I'm fairly sure that he's going to recommend starting an TNF-blocker of some kind. He actually recommended that to me last time, but I still wanted to try other less-serious medication options first. Until this eye thing, I was still thinking I wanted to try some other things (different NSAIDS, diet changes, etc) and hope to avoid biologics. Frankly, they scare me. Fortunately, I don't really mind needles, so if I have to do infusion-therapy or give myself injections, I can handle that. But I am very wary of the side effects and risks and really want to discern whether this is the right choice for me. However, this latest stuff is pushing me more towards considering this. I want to be careful about serious drugs but also responsible about protecting my body over the long term (and this book-lover takes vision loss really seriously!). Please pray for Mike and I as we discern this decision.

I have been doing pretty well in the last few months, feeling like I was getting a handle on the emotional part of this, but this new issue (along with the heel pain starting up in the past few weeks) has kind of thrown me for a loop. I'm feeling pretty anxious and emotional about the whole thing again. So, I would ask that you please pray for me, for the peace and strength to let go of fear and anxiety. Please also pray for Mike. He has been so amazing throughout this whole thing, and I am so blessed to have him by my side, but he's carrying a lot of the burden in our family right now, and I know he could use some more grace to support him.

Thank you to everyone who has been praying for me and asking me how I'm doing. I continue to make an effort not to spend a lot of time whining and complaining, so I rarely bring up my health, but it's an ever-present reality for me right now. As much as I'm trying to keep my focus outward, on others, this does take up a lot of my thoughts and emotional energy these days. So, I appreciate those of you who have asked and really listened. Please ramp up the prayers again if you can, at least for the next few weeks as I hopefully get this eye thing under control and discern our next step in treatment. I'll keep you posted. 

I love you all, and I thank you so much for all your support. I feel truly blessed to have so many wonderful friends and family supporting me. 

Also - sunshine makes every day better. I thank God for that. :)