Quigley Therapy and Christmas

Merry Christmas and Happy New Year, friends!


Have you recovered from all that delicious food yet?! We had beef and ham and bacon and green bean casserole and loads of goodies. Mmmmm! Christmas Eve was the Siler Family Christmas and it was so much fun. It was great to see everyone and spend time together. My cousin and his wife have a little boy and it was his first Christmas. He's adorable and I had lots of fun making faces at him and making him laugh! He's pretty cuddly too :-) Later that night we opened presents as a family. When we were kids we could never open presents on Christmas Eve, we had to wait for Christmas morning. Now that we're adults, we don't wait! Opening presents was a lot of fun and full of surprises, which I love. My dad has the gift of giving and he surprised each of us with an extra present after we were all done. (Ask my mom about her stuffed buffalo.) I almost burst with excitement when I opened my new camera (which was difficult to open because my hands were shaking a little more than usual)! We didn't get to bed until probably 1:00am, what a night! Good thing I had slept in and taken two naps before company came. Christmas morning we got up and got ready for Christmas morning brunch. This is a great tradition where we have a brunch for our family and some of our neighbors. The neighbors are always changing, and it's fun to have them over. We had a very full house this year! After everyone left we crashed, in fact, I'm still crashed! Watching the Packers win was a great way to end Christmas! 


On Christmas, as I thought about the night before and all the fun and family and presents, I also took some time to read through the Christmas account and remember why, and who, we celebrate. Christmas isn't about giving presents, it's about remembering the greatest gift ever given to us, Jesus. God gave us the gift of Jesus in the form of a cuddly little baby. I wonder what was going through God's mind as the world received the gift of His Son? He was probably excited, He was giving the greatest gift our world could ever receive. He was giving Mary and Joseph a child, He was giving the world hope and a way to be reconciled to Himself. Just think of the feeling you get when you have a present to give someone that you know they will absolutely love. You're almost more excited to give it than they are to get it! I imagine God had a look on his face similar to the look on my dad's face as he gave us all our surprise presents. I think there was another feeling as well. I imagine that along with the excitement, there was pain and sadness. God knew that this baby, His Son, would grow up to redeem His people, but that redemption would come through the most painful, horrible death imaginable. People would hate Jesus, they would reject Him. One of his closest friends would betray him, the rest would run away. His perfectly innocent Son would be spit on, mocked, brutally beat and hung on a cross to die. I'm sure it helped knowing that three days later Jesus would raise from the dead, conquering sin and death once and for all. 

But think about it. Just because you know something is going to end well doesn't make the process of getting there any easier to go through, or to watch. It's the same in our lives, there are so many hard things that we go through. I know of several people that are struggling right now with death, sickness, missing loved ones that have passed away, tough decisions that need to be made, etc.... If you are a follower of Jesus Christ, you know that there is hope. You know that someday you will be reunited with your loved one. You know that someday you will be in a place where there is no sickness or death. You know that "after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you" (I Peter 5:10). I love these verses, they are so full of hope. If you are struggling to get through the holidays, it's okay. I think that sometimes Christians pass over the "after you have suffered" part of the verse and move on to the everything is going to be okay part. But suffering is a real part of life and it sucks. So this is my encouragement to you. If you are suffering right now, don't feel like you have to get over it. Let Jesus meet you in your suffering and allow Him to restore you, confirm you, strengthen you and establish you in His time. And if you know someone who is suffering right now, be Jesus to them and meet them in their suffering. Sit with them, cry with them, laugh with them. Allow them to be where God has allowed them to be without expecting them to snap out of it and get back to normal.


I'm so thankful for those of you who have been Jesus to me as I struggle with my health. I'm thankful for those of you who have showered me with grace. I'll be honest, it's hard to accept! (Not that I'm stubborn or independent or anything...insert sarcasm here!) I'm thankful for those of you who continue to pray for me and encourage me and try to understand what I'm going through. It's been a tough month. See my last post "The Devil's Tic-Tacs" to read more about that. Since that post it's been about the same, maybe a little worse. I finally caved and went to live with my parents for a couple of weeks. I got here last Friday. They got me set up with an amazingly comfortable bed downstairs in the library/computer room. No stairs!! I'll be able to bring the bed back to the apartment with me and I'm excited about that! I'm enjoying the time with my family and getting a little Quigley Therapy! Cutest dog in the world and he loves me to pieces :-) 


I have less than a week until I go back to Mayo in Rochester to see a dermatologist. I have some thoughts about that and would love your prayers. I was referred to this department because of rashes and itching and hair loss. My rheumatologist in Eau Claire thought those were signs of the disease becoming more active. However, my rheumatologist in Rochester thinks they are side effects of the methotrexate and plaquenil. Those are the two drugs he had me stop taking  and the reason I am in so much pain now. It's been almost a month since I stopped taking the methotrexate and three weeks on top of that since I stopped taking the plaquenil. My symptoms are not any better and are in fact a bit worse I think. If it was an allergic reaction I would think the symptoms would have gotten better when I stopped taking the drugs. The rash/itching concerns me because if you have an allergic reaction to plaquenil and don't catch it quickly enough it can turn into a skin disease that my doctor didn't explain to me but really hopes I don't have. 


With all that said, will you join me in praying for a few things? 
-Pray for wisdom for the dermatologist that I see on Jan. 4, 9:45am. 
-Pray that my body has not developed a new disease.  
-Pray for wisdom for my rheumatologist as he receives the information from the dermatologist and determines if he will put me back on the medications I have been on or  if I will need to start new medications.
-If I need to be put on new medications pray for wisdom in choosing one that will work well for me as there are several options, all with their own array of new and different side effects.
-Pray that I would be able to go back to work soon. I haven't been able to work for the past several weeks and I really miss work and all the fun, crazy people I work with :-)
-Lastly, please pray for a subsiding of the pain I've been experiencing. I'm so sick and tired of being sick and tired and in pain! 


THANK YOU, my friends. I don't know what I'd do without you! Here's to joy and health in the new year. Can you believe it's going to be 2012 soon?! Yikes! 

The Devil's Tic Tacs

Hello again,

Here's another update for all of you curious people who are so faithfully praying for me! Praise the Lord that my doctor decided I could go on Prednisone for a month while I'm off my other meds. This is a blessing and a curse! After starting it I had a couple of pretty good days with extra energy, the most I have had in a long time. Then I woke up with a sore throat. I haven't left home since Tuesday night and I'm going a little stir crazy! My throat doesn't hurt as much today, but I've had a fever and feel all around lousy. I've occupied myself by watching The Facts of Life re-runs on YouTube, an episode of Psych, reading a little (it's too hard to concentrate), and listening to Christian rock music while eating some of the delicious food my dad brought me.

I've also been keeping up with some of the girls in my Undifferentiated Connective Tissue Disease (UCTD) Group on Facebook, they keep me sane. I learned a few things this week from them. I learned that many of them like rock music, the heavier the better. Now, I've never really understood the appeal of rock music. All those people screaming at you, who likes that? I'd rather listen to something happy and cheerful. That is, until recently. I've been enjoying it more and more and I think I know why my UCTD girls and I like it. (Let me know if I'm wrong girls, this might just be me!) When you deal with chronic pain it is very frustrating. The disease messes with you, the drugs they put you on to fix you give you side effects that are just as bad as the disease they are supposed to be fighting. With UCTD the pain is never in the same place and you never know what new symptom will decide it wants to come out and play. Just when you think things are under control BAM! Something new hits you that you didn't even know was a possibility. More tests, new doctors, more waiting, less answers. It makes you want to scream and beat someone...er, um, I mean something. Enter the rock music. Somehow it is comforting to listen to someone else scream, especially when I don't have the energy to do so myself. And it's not all screaming, some of these people have really beautiful voices. I like music that I know has clean lyrics, even if I can't understand them all (that's what the internet is for, looking up words to songs)! My brother gave me a couple of Demon Hunter CDs. (Thanks Ike!) One of the songs on there is called Collapsing. I thought I would share this one with you because it's not so "scary" for those of you who don't like metal. Here are some of the words:

I, I see the weight of hollow death residing in you

Take now your final breath

Exhale the truth

I see the fear of nothing left

Dead fragments of youth

You hold it in yourself 

I feel it too 

I mourn your blindness 

I die along 

And swallow darkness 

In misery is where I belong 

Collapsing in on yourself 

I don't know why I try (I try) 

Collapsing in on yourself 

I don't know why you deny 

I, I know the light is burning dim and dying in you 

I know the pain that lies within 

I feel it too 

To watch the video, click HERE.

You know, it would be so easy to live like this. It would be so easy to collapse, to let God's light that is in me burn dim, to give in to the pain, to let the weight fall down heavy on me, to blind myself to what God is doing and how He is working. This world is full of people living a hollow death, who are blind to what really matters. I feel for them, I understand them. But I refuse to be one of them. I refuse to let the devil win and drag me down. I understand what it is like to live with chronic pain. I understand how people can become depressed and see the world as a dark place and even though I feel it to, I will try to direct people's eyes to the Lord, just as I try to keep my own gaze on Him. He is the only one that can make sense of the pain and bring light into the darkness. I don't know what pain or darkness you may be experiencing right now, but I want you to know that hope lies in the loving arms of the Lord. Reach out to Him and He will pick you up and set you in a place of honor in His Kingdom.

It's so easy for those of us in the church to shoot our wounded, to gossip about those we don't understand, to judge others and think we are better than they are. I have done it and I am ashamed. I ask for the Lord's forgiveness, for Him to change my heart and help me to love those I don't understand...and those I do. We have no idea what people are going through or what kind of darkness they are walking through. As we expectantly wait for Christmas and the celebration of Christ's birth I encourage you to have compassion and show love. Reach out to someone who may be hurting and show them that they are beautiful and loved and cherished by the Maker of the Universe. Pain (of any kind) can do funny things to a person. So if someone acts rude, yells at you or does things you don't understand, love them anyway. It probably isn't you they are fighting, but the darkness that tries to overtake them. Or maybe they are fighting the medication that is supposed to help, yet plays with their emotions and turns them into someone that deep down they are not. So don't take it personally, love them and gently point them to the One who can take away their fear and walk them through the darkness into the light of His comfort, love, grace and mercy.

If you are the one who is walking through the darkness, take heart my friend. You are not alone. You are loved. You are cherished. You are not a mistake. You are here for a reason. God has amazing plans for your life. It may not seem like it now, but reach out and take God's hand. Let Him lead you into the light. Let Him love you. Don't be afraid, or too proud, to accept His love. The Lord of the universe loves you. He died for you. Don't ever think that what you are going through is too much or too bad for God. He sent His Son to die for you. We celebrate this fact in a couple of weeks. Accept that and let Him radically change your life. God never said this life would be easy, in fact, His Word says that you will face much suffering. It also says that He will never leave you or forsake you. Never. Reach out to Him and He will use the suffering you are going through to make you strong and equip you to love the way He loves. You don't have to journey through this life alone. Take His hand, He's been waiting for you.

(Wow, this blog entry didn't go anywhere near where I was expecting it to go tonight. I guess someone needed to hear this and I must have needed to speak it. May the Lord use the words my fingers type for His glory.)

Don't worry, I didn't forget the second thing I learned from my UCTD group this week! Besides the fact that many of the members enjoy rock music, I learned that prednisone is not-so-affectionately called the devil's tic tacs! My new friend Miranda let me in on this well known nickname that I had somehow missed when she said: "Even if you are an angel, we don't call prednisone 'the devils tic-tacs' for nothing! They really bring out the worst in us!" I should have known, even though this stuff helps the pain, it sure messes with your emotions and makes you feel quite grouchy, even angry. So if I snap at you or say something unkind or insensitive or have on my glass half empty glasses or seem not quite myself it's because I'm throwing back the devil's tic tacs! I've also been having a terrible time sleeping. Between the pain and my downstairs neighbor, I'm a walking zombie. I'm sorry, I will try not to use these things as an excuse to be grouchy! Pray for me, and let me know how I can pray for you. I have lots of time on my hands as I sit here not feeling well. Keeping my eyes on others and lifting them up to Christ helps me keep my eyes off of myself and put them where they belong, locked with the eyes of my Maker.

One Moment At A Time

Hello again friends,

I really should write more than once a month or so because when I sit down to write, I can never remember what I'm supposed to be writing about! Let me try to remember what has happened since the last time I wrote to you...

Let's start with something really fun. I have been to two, count them, two, Packers/Vikings games! In October some friends and I went to the Metrodome. We painted our faces, sprayed our hair green and were surrounded by thousands of screaming fans. It was amazing! Last week my dad and I went to the game at the frozen tundra of Lambeau Field. Before you get too concerned about how cold I might have gotten I'll let you in on a little secret. We got to sit inside! We had a great view of the field, amazing food (two words: dessert cart!), I met some great people and of course, the Packers won! Two completely different experiences, yet both amazing!

Glory Displayed is doing great! I had several craft fairs recently. My 2012 calendars turned out great and are selling well. I have had several special orders and those are always fun. There is still time to order a unique, custom gift for Christmas (hint, hint)! We had our first snowfall just the other day. I was able to get out and take a few pictures before my hands went numb and one of them was featured on the local news. A Squirrel's Eye View blog is doing well. People seem to enjoy it and someone told me I should turn it into a children's book. That was encouraging because that has been the plan all along!

I did have one discouraging thing with my business earlier this month. When I do a craft fair I try to bring someone along to help me out. Earlier this month, all of the people who would normally help me were not able to and I went alone. My roommate helped me load up the Jeep bright and early (thanks Kristi!) and off I went with the attitude, "I can do this!" I got there and started unloading. Thankfully the location had some carts that we were able to use to haul our things and that was very helpful. As I was climbing towards the backseat of the Jeep trying to get a few things on the other side I completely lost my balance and fell over into the front seat. (Have I mentioned I get dizzy a lot?!) As entertaining as I'm sure I looked, I don't think anyone saw me! I recovered and hauled the rest of my things in. I got the table all set up and had a great day at the event. When it was over I packed my things up and stacked everything in a nice little pile on the floor next to my table. And then it hit me. I was exhausted and really weak. I had no idea how I was going to get that table back to the Jeep...and all the carts were being used. I was standing there staring at this pile of things wondering what in the world I was going to do when my dear friend Jenny stopped by and and said she was done packing her stuff up asked me if I needed some help. She carried my table out for me and when we came back in there was a cart available. Thanks Jenny! I know that may seem like such a little thing, but it was a HUGE blessing to me! I packed up, went home, unloaded all of my things and crashed. Lesson learned: don't do craft fairs by yourself. I hate that I need to ask for help, but I do.Thanks mom for helping me at a couple of the events this month, it is always so much fun. It will be even more fun when you make some things to sell too :-)

So...health stuff. Blah! I went to Mayo in Rochester last month. The foot pain turned out to be plantar fasciitis. That was a quick fix, I got some insoles for my shoes and my feet feel so much better! My doctor didn't think that the disease was becoming more active, he thought that I was starting to react to the medications I am taking. I had to stop taking the plaquenil for three weeks and then call him to report any changes. I called last Friday to let his nurse know that things aren't all that different. I finally got a call back today. The nurse told me that they will be making me an appointment to see a dermatologist about the rashes, itching and hair loss. In the meantime, I need to continue to stay off the plaquenil and I also have to stop taking the methotrexate until I see the dermatologist back in Rochester. I know, I just threw out a bunch of big words that probably don't make sense to most of you. Basically, plaquenil and methotrexate are the two medications that allow me to function. My other medication address the side effects from these two drugs, for the most part. I have already been having more bad days with winter arriving. Last Tuesday when the front was coming through it took me out. I was in bed most of the day and in a lot of pain. The thought of stopping both of these medications is not happy.

With that said, I have a couple of prayer requests for you. Please pray that I would be able to get an appointment in the very near future. Pray for wisdom for the doctor(s) I will see and wisdom for my rheumatologist as he decides which concoction of drugs he wants to put me on next. Pray that I have not acquired a skin disease. The reason my doctor took me off the plaquenil in the first place was because of the itching and rashes. He thought it may be an allergic reaction to the drug. If that is the case and I continue on it, I could develop a skin disease. Pray that has not happened! Please pray that God will sustain me and allow me to function these next days/weeks. It's amazing how quickly things can go downhill.

Ugh, so that's my update for the month. You have all heard the saying "one day at a time" right? Well, my motto has become one moment at a time! Sometimes that's all I can get through. This has once again been an emotional roller coaster of a month. However, Thanksgiving is just a couple of days away and I'm thankful for so many things. Here are 11 things I'm thankful for in 2011:

1. I'm thankful for JESUS who will never leave me or forsake me.
2. I'm thankful that I'm alive, most days. (Those of you with chronic pain will understand)
3. I'm thankful for the level of health that I do have.
4. I'm thankful for friends who still love me when I have to cancel on them, yet again.
5. I'm thankful for a growing business that is so much fun.
6. I'm thankful for a good job that allows me to have a flexible schedule.
7. I'm thankful for amazing parents that love me and are Jesus with skin on in my life.
8. I'm thankful for my big brother who knows how to fix my Jeep when I break it.
9. I'm thankful for Quigley who just plain loves me to pieces.
10. I'm thankful for roommates who "get me" and laugh with me instead of at me.
11. I'm thankful for YOU, who pray for me and encourage me and help keep me going.

Happy Thanksgiving!

Photography, Retreating and Testing

Hello again friends!

It never ceases to amaze me how much can happen in a month (or a little more in this case). Where shall I begin? Let's start with the good stuff! It has been an absolutely beautiful fall here in West Central Wisconsin. The leaves were gorgeous this year! I was able to do a family photo shoot at a local park as well as spend a fun day shooting the fall leaves at Irvine Park in Chippewa Falls with my mom. I'm pretty sure that God is a Green Bay Packers fan because there seems to be an overabundance of green and yellow trees this year! The photograph above was taken at Irvine Park and was featured on the local evening news last night along with a few other submissions by local viewers. They liked it :-)

I was able to go to our Western Great Lakes District Women's Retreat in beautiful Green Lake, WI earlier this month. Our speaker was Susie Larson and I was so blessed by her. There were so many good things at retreat. God was clearly present and He used Susie to speak into many lives, including mine. You know how there are things that you know, but it's a distant knowledge somewhere in the back of your mind? God revealed something to me that I should have known, and probably did on some level. When I got sick and my life drastically changed I had some major adapting to do. I firmly believed that God was redeeming my health issues and bringing good out of a not so good situation. Knowing that, I still somehow had the mindset that I had to figure out what Plan B for my life is. Plan A was taken away and now I have to figure out something else. 

God (lovingly of course) slapped me upside the head and told me that THIS is His Plan A for my life. I knew that He wasn't surprised when I got sick, but this? It kind of shocked me. I started thinking and praying about it and I realized that MY Plan A was to serve God overseas, sharing His glory with those who have never heard the name of Jesus. Then I thought about where God has me right now. I work at a church and I'm helping to bring the Perspectives class to our area. This class is all about sharing the glory of God with the nations, all peoples. My photography business, called Glory Displayed, focuses on sharing the glory of God through His creation at the same time raising awareness of human trafficking and funds to fight it, bringing freedom to the captives. I'm continuing to learn what it means to walk my freedom in Christ, I'm learning that I exist to bring glory to God. We all do. How is this different from my Plan A? It's not! The path my life has taken is not the one I thought it would be, but it's taking me to the same destination. How I missed this before I don't know, but I praise God for using Susie Larson to open my eyes! When I came to retreat I was weary, exhausted and holding on for dear life. When I left retreat, I was refreshed, excited and ready to fight. Praise the LORD!!

Now to the testing...testing of my faith? Yes! But I already wrote about that. This time I'm talking about the exciting world of medical testing :-/ I won't gross you out by the different tests and procedures I've had this past month, let's just say they weren't fun. Everything came back fine for the most part. In other words, they still have no idea why I've lost so much weight! I have an appointment with my rheumatologist at Mayo Clinic in Rochester on Thursday so my GI doctors at Luther in Eau Claire suggested talking to him when I'm there to see if he can get me in with the GI department at Mayo on Thursday. They sent an e-mail to him, giving him a head's up. So that is my major prayer request for this month. Right now I'm scheduled to get all my blood sucked out of me at 9:00 (that wasn't dramatic at all was it?!) and see my rheumatologist at 1:00. Pray that if there is another doctor I should see that day that one would be available. 

Pray also for wisdom for my rheumatologist. It has been just over a year since the last time I saw him. The Undifferentiated Connective Tissue Disease is becoming more active as evidenced by the incessant itching, more rashes, more pain and a general increase in the things I normally deal with. My hands have been hurting more and my feet have started hurting a lot. That is really annoying! My rheumatologist in Eau Claire wants to put me on Benlysta, a new lupus drug. There would be a lot of logistics to figure out if I go on this, not to mention all of the possible new side effects and seeing if my body will even accept the treatments.

Thursday has the potential to be overwhelming and I would really appreciate your prayers! I know God is in control and I give Him all the praise and glory for what He is doing in my life. He loves me so much and you know what? He loves you so much. Really. You are loved and cherished by the Maker of the Universe. How cool is that?!

"Oh, magnify the LORD with me, and let us exalt his name together! I sought the LORD, and he answered me and delivered me from all my fears. Those who look to him are radiant, and their faces shall never be ashamed." -Psalm 34:3-5

National Invisible Chronic Illness Awareness Week

Hello Friends,

Today is the start of National Invisible Chronic Illness Awareness Week. Watch this video:

I think the theme this year is quite appropriate: Deep Breath, Start Fresh. When I first got sick in 2008 I was forced to start fresh. It has taken me a couple of years to do this well, but I'm slowly getting there! Living with a chronic invisible illness is much more difficult than I ever imagined. It is a battle. I am constantly battling the disease, trying to stay ahead of it. There are doctor appointments galore. Every time I get a cold I have to go to the doctor before it turns into something much worse. But first I have to figure out if I'm really sick or if I'm just the normal sick. This can be quite a challenge as many symptoms of a cold or flu (fever or feeling feverish, headaches and/or body aches, chills, fatigue) I have on almost a daily basis. I have regular doctor appointments every 3-6 months to do blood work and make sure my internal organs are not being affected by the disease or the medications I'm on. I see an eye doctor every year to make sure the medicine isn't affecting my eyes. The side effects of my medicine can be worse than the disease itself. I have to make difficult decisions about what to take or not take based on limited information and hoping that the meds will keep me functioning without giving me cancer, making me go blind or shutting down my organs. There is a new drug out that is working well for cases like mine. I am working with two rheumatologists to decide if I want to try this medicine. The side effects? Don't ask!


Is it worth it? Some days I don't know. I take my medicine because if I don't, life is miserable. Even though I hate them and know they could kill me, I need  them. But then again, if the disease isn't under control and my body keeps attacking itself, that could kill me too. I don't want to shock you or scare you or make you worry, but this is the reality that I live with. I don't worry about it because I have very good doctors that check and double check everything. I also know that ultimately God is in control and my life is in His more than capable hands. Another thing that is difficult is knowing that this is a chronic illness. Unless the Lord intervenes and heals me, this is a battle I will be fighting the rest of my life. It is exhausting and depressing to think about, so I try not to. Needless to say, life is a roller-coaster of exhausting emotions. Some days I just want to scream. So I listen to Skillet's song "Never Surrender" and I feel better!

I really like the part that says "Do you know what it's like when you're not who you wanna be? Do you know what it's like to be your own worst enemy?" With this disease, I am my own worst enemy. My body is attacking itself and I am constantly battling it. But I will never surrender! I try to have joy in the midst of pain. I see how God is working in me and through me and I rejoice. I see how He touches my body and helps me through when the pain is bad and I praise Him for it. It is a daily battle of fighting this disease, yet surrendering to the Lord and His plan for my life. He is using this disease for His glory. I take great comfort in that because if He was not glorified through this disease, it really would be hopeless. However, I know that a greater good is coming out of it and I can go on another day, relying on my Father in Heaven to get me through and take care of me. 


It's hard for me to talk about what/how I am feeling most of the time. It is such an internal battle that I just don't have the energy to relive it out loud. I know that does not make sense to many people and I've hurt people by not talking about it and letting them be there for me. But that is why I write. I can write to you things that I can't say out loud. When I was a little girl my mom and I used to keep a journal. We would take turns writing letters to each other in it. It gave me the chance to write about things I felt silly talking about. We kept the journal up through college and even now write occasionally. Which reminds me, I'm pretty sure it's my turn...sorry mom! Through my blog I can keep you updated about what is going on in my life so you know, even when I don't have the energy to talk to you about it individually. I always feel so much better after a blog post where I can get everything out. It's therapeutic for me and you get a look at what's going on inside my head!


One of the resources that was made available on the Invisible Illness Awareness Week website is called "30 Things About my Invisible Illness." This is mine:

1. The illness I live with is:

Undifferentiated Connective Tissue Disease

2. I was diagnosed with it in the year:

2010

3. But I had symptoms since:

January 2008, though I have struggled with a poor immune system most of my life.

4. The biggest adjustment I’ve had to make is:

Changing my life plans and finding new dreams

5. Most people assume:

That I’m getting better…or that I will get better

6. The hardest part about mornings are:

Finding the energy, strength and motivation to get out of bed

7. My favorite medical TV show is:

Mystery Diagnosis

8. A gadget I couldn’t live without is:

The rubber grip thingy to open things…though that doesn’t always work either!

9. The hardest part about nights are:

Trying to get comfortable and fall asleep when everything hurts

10. Each day I take 12 pills & vitamins. Each week I get 1 injection.

11. Regarding alternative treatments I:

Have tried so many things, but I need to be careful to follow my doctor’s advice. They are the experts and some alternative treatments can make my particular type of illness worse.

12. If I had to choose between an invisible illness or visible I would choose:

Visible

13. Regarding working and career:

It is difficult. I want to work so much more than I am able. I do what I can.

14. People would be surprised to know:

How good I am at putting on a happy face and pretending everything is ok when it’s not.

15. The hardest thing to accept about my new reality has been:

That I can’t do things that I used to be able to do, love to do, things that make me, me.

16. Something I never thought I could do with my illness that I did was:

Start a business

17. The commercials about my illness:

There aren’t any.

18. Something I really miss doing since I was diagnosed is:

Climbing

19. It was really hard to have to give up:

My dream of living overseas and serving the Lord in a different country

20. A new hobby I have taken up since my diagnosis is:

Photography…and it turned into much more than a hobby!

21. If I could have one day of feeling normal again I would:

Ride my motorcycle to a place where I could hike and climb things all day!

22. My illness has taught me:

That I am more than the dreams I have. I am more than the title of my job.

I am more than this illness. My life may look much different than I ever imagined, but it is good. I have learned that my reason for being in this world is to glorify God in every circumstance. 

23. Want to know a secret? One thing people say that gets under my skin is:

You look good, you must be feeling better.

24. But I love it when people:

Write me an encouraging note or give me a hug (This must go back to the not liking to talk about it out loud thing I mentioned earlier!)

25. My favorite motto, scripture, quote that gets me through tough times is:

Romans 12:12 “Be joyful in hope, patient in affliction, faithful in prayer.”

26. When someone is diagnosed I’d like to tell them:

God isn’t surprised. He can use this for His glory.

27. Something that has surprised me about living with an illness is:

That I’m not as strong as I thought I was or would like to be. I need encouragement and support and sometimes help with little things like doing dishes or cleaning the bathroom.

28. The nicest thing someone did for me when I wasn’t feeling well was:

There is a quote I ran across that says, “A true friend is someone who sees the pain in your eyes, while everyone else believes the smile on your face.” The nicest thing someone has done for me is taking the time to get to know me. The me that I really am, behind this disease. The me that I was before I got sick, that is still buried somewhere deep inside.

29. I’m involved with Invisible Illness Week because:

I am just one of so many people that suffer from an invisible illness. By sharing my story I hope that it will help you understand other people in your life that are struggling with an invisible illness.

30. The fact that you read this list makes me feel:

All warm and fuzzy inside :-) Actually, it does! It makes me feel really good that you care enough to read this and learn about me and others like me.

A Sign at the Fair

Hello again friends!

Did you know that you have witnessed something special? Something amazing. Something exciting. Something, dare I say, miraculous?! That's right, if you have been keeping up with my blog you know that July 27-31 I was at the Dunn County Fair. Now, you may be asking yourself, what's so special, amazing, exciting and miraculous at the Dunn County Fair? That week...it was me! Before you think I have a major ego problem, keep reading!

In my last blog update I asked you to be praying for me. I asked specifically for you to "pray for strength and energy and the ability to interact well with those who come to my table." God answered your prayers! Typically when I do a craft show I get everything ready the day before. The day of I load my Jeep, drive to the venue, set up, sell for 7 hours or so, tear down, drive home, unload my Jeep and put everything away. This is a tiring process and I usually need the next day to rest and recover. With the Dunn County Fair I didn't have that option. It took me several days to get everything ready. We set up our space on Tuesday evening. Wednesday - Saturday I was there 10am-10pm and Sunday I was there 10am-5pm and then tore everything down. There is no way that I should have made it through all of that, BUT I DID! Sure, I got tired and sore, but I could stand and walk fine. It was hot and humid, but I could breathe and I didn't have any asthma issues. In fact, by Sunday when I should have been mostly dead, I was doing great! My mom came and kept me company for part of the day and she could hardly stand it. Me, I was doing fine...though the spray bottle fan did get a lot of use that day! All week I was praying for extra strength and energy and God answered my prayer, and your prayers. I didn't have an overabundance of energy, but I had enough to get me through the week. That my friends, is a miracle!

Is is just a miracle, or is it more? In church we have been going through the Gospel of John. We have been learning about the miraculous things that Jesus did while on earth. We have been learning that they more than just miracles, they are signs. They are signs because they point people to God. I really believe that the week at the fair was a sign that points me, and perhaps you, to God.

Let me try to explain. You might be saying to yourself, "Wow, Josie just went off the deep end! Miracles and signs, what is she talking about?" If you have been following my journey at all you know it has been a long road. Sometimes it seems like a long road to nowhere and then something like this happens. The months leading up to the fair have not been so great. My health problems are getting worse and I have had so many doctor appointments I've completely lost count. I am struggling with my extreme weight loss (30 pounds now since September). I have more appointments for that as they cannot figure out why it is happening. I am in the process of changing the main medication I take to keep the symptoms of the autoimmune disease under control. I have stopped taking this medication to see if it is causing the weight loss and I won't start a new medication for several weeks. I'm always in pain and have had some asthma scares recently.

So what in the world was I doing at the Fair for a week?! Honestly, I don't know! It was something that I really wanted to do and I didn't hear God telling me not to do it. It was a risk I took and I got to see God do amazing things! So it was probably just a coincidence right? The weather happened to be good so I didn't hurt as bad. Well no, it was hot and sticky and it stormed. All things that my body doesn't like. No my friends, this was miraculous. God sustained me and made the pain and fatigue tolerable enough to do what I needed to do. He also graciously allowed me to continue feeling "not horrible" this week. I have been more tired and have had a week of sleep to catch up on, but for the most part I'm doing okay. I'm back to my regular pain and fatigue, but I didn't completely crash like I was expecting.

I see this as a sign from God because it pointed me to Him, and it can point you to Him as well - that's why I'm sharing this with you. You see, I have prayed for healing so many times. I don't know why God has allowed me to be sick like this and sometimes I get angry with Him. I fight with Him. I say things like "God, don't you know how much more I could do for you if I felt better? God, what a miracle it would be if you healed me completely, so many people would see Your power and turn to You because of it." I struggle because I know God could heal me in the blink of an eye. He could speak and I would be well. He could look at me and heal my body. He could touch me and bring wholeness. Yet I'm still sick. This week at the Fair God sustained me. He looked at me and said "Josie, you will have enough energy this week. Not too much, but enough for this task I have for you." What was this task? Was it selling prints and cards at the Fair for a week? No, I don't think so. I think the task He had for me this week was to learn a lesson and share it with you! This was not a lesson I learned in a book, it was a lesson learned in the laboratory called life. I felt God sustaining me. I felt joy and strength and enough energy. Through that I learned that God is all powerful. He is all knowing. He is everywhere present. He knows me and He cares about the little details in my life, even something as strange as the Dunn County Fair (and believe-you-me, that fair is strange)!

The take-a-way for the week for me was this. If God can help me feel better for a week, He can help me feel better longer. If I am not feeling better and if I am still struggling with my health it is not because He doesn't care about me. It is not because I don't have enough faith. It is not because I don't ask Him enough. It is not because I sometimes don't pray and read His Word as often as I should. It is because He is not done using this illness in my life for His purposes. He is intentionally allowing me to be sick for a greater good. I have to continue to trust that God's plans are better than my plans and His ways are better than my ways. Yes, it's true. God wants me to be sick right now. If He didn't, I would be healthy. You know what? I'm okay with that. If my being sick draws me closer to God then I praise Him for it. If my being sick draws YOU closer to God then I praise Him for it. Who am I to expect my life to be easy? Who am I to expect that I deserve good health? I am clay in the Potters hands and He can do with me and my life whatever He wishes. This, my friends, is what I learned at the Dunn County Fair!

Oh, I almost forgot! I put some photographs on Capture Wisconsin's website this week and have gotten some amazing feedback from people already! Check it out at http://www.capturewisconsin.com/users/JosieSiler. While you're there, vote for my photographs so I can be published in a book that they are making out of the best photographs on the site. How amazing would that be?!

P.S. (If you are looking for something else to do, read the Gospel of John or listen to some sermon audios on it: http://machurch.net/audio.htm)

One Day at a Time

Hello friends,

It's been a long month for me. I'm not sure where to start. July started off pretty well. I had a table for Glory Displayed at FreedomFest in Menomonie on the 4th and it was the perfect day. I sold some things and got to enjoy being outside with friends all day. I met a lot of great people and found some more small town connections - those are always fun!

July has been somewhat of a roller-coaster ride it seems. There have been really good things and really not so great things all mixed together. My roommates and I were able to have a couple of different groups of people over which was a ton of fun. I also had to cancel on some people because of my health which wasn't so much fun. I got to go to Ladies Day Out in Menomonie with my mom and Aunt. What a blast! Mom and I got henna tattoos and had some fun girl time.

I've been continuing to get my methotrexate in shot form the last couple of weeks. I'm not sure it's working any differently. I get my shot every Monday so I have it on the calendar on my phone to remind myself. On my calendar you can only see part of the words in the week long view. So when I look at my calendar for the week it always makes me laugh when I see Meth every Monday afternoon :-D

We've been having a nasty heat wave here in the Midwest and needless to say it has not been so great for my health. For a couple of days every time I went outside between my apartment and work (half a block...driving) I would have to use my inhaler. The humidity was terrible. On Tuesday I worked all day and went home for a quick supper. I was headed back to church for a Perspectives meeting that I was supposed lead. My roommate dropped me off next to the front doors and I walked in and started coughing and having a hard time breathing. I took my rescue inhaler twice, but it didn't work. It just kept getting worse and worse. Here I was laying on the floor with my feet on a chair, trying not to pass out and trying to breathe as everyone arrived for the meeting. Pretty soon I was shaking uncontrollably and I couldn't move...except the shakes I couldn't control. It got so bad that I had to be taken to the emergency room, which thankfully is about a block away. I spent 4 hours in the ER getting two breathing treatments, a couple chest x-rays, some steroids for there and to take home and a "happy pill" to calm me down and let me breathe better. I've got to say it was pretty terrifying and I'm so glad that there were people there to get me to the hospital. Wednesday I was so exhausted I slept most of the day and was not allowed to go outside until the humidity broke. Thankfully Thursday was much better and I got to get outside some. It was the most time I had spent outside in a week and it was wonderful!

I have been making a lot of progress on Glory Displayed things this month. New prints, new cards and a new page on my Facebook Page (https://www.facebook.com/GloryDisplayed?sk=app_208527462518885). I also just designed and ordered new business cards. I am busy getting ready for the Dunn County Fair next week. The fair goes from Wednesday to Sunday and it is going to be a lot of long days. I would really appreciate your prayers next week. Pray for good weather and no humidity. They are going to be long days and honestly, without your prayers and the grace of God I'm not going to make it through the week. However, I am really excited about the fair. I think it will be great exposure for Glory Displayed and a fun time. Please pray for strength and energy and the ability to interact well with those who come to my table.

I still have things to get ready, but I am not feeling well today so I'm taking a break. I slept in, I'm updating my blog and we have season two of Psych to watch! I want to leave you with something encouraging, but I'm not feeling it. Let me find something that can encourage all of us. ... How about this? Philippians 1:6 says, "And I am sure of this, that he who began a good work in you will bring it to completion at the day of Jesus Christ."

Glory Through Pain?

Hello my wonderful friends,

I know this is a rather lengthy post so if you read anything, read the last two paragraphs :-)

I'm a little early on this month's post, but I wanted to write to you before I forget everything I wanted to tell you! It has been a busy month so far. I started things off having a table at the Dunn County Dairy Breakfast. It is not often that I am out the door around 5 in the morning, but I must say that the drive to the Dairy Breakfast was the best part of the day. The sun was low, there was dense fog across the valley and the combination was breathtaking. It was hard to go sell photographs instead of stopping to take some!

The following weekend my roommates and I drove up to Eveleth, MN to visit Tom and Lois. Tom used to be the Administrative Pastor at church and it was great to catch up with him and Lois! We were able to rest in an absolutely beautiful setting and Tom helped me get some great photographs out on the lake! He was even kind enough to get a flat tire so that we could be stuck by the side of the road for an hour. That was just enough time to walk down into the woods on the side of the road, find some lady slippers to photograph along with some beautiful trees and a "mostly dead" dragonfly! We stopped by Duluth on the way home and went to Canal Park. On the way home we even saw a mama bear and three cubs! By the time we were heading home, I was spent. Most of you know that I like to get a unique perspective when I do photography and this usually means laying on the ground and contorting myself somehow. By the time we left Duluth my roomies had to pick me up off the ground. You would think I would learn...but the photographs to be had were screaming at me louder than the pain!

I got home and crashed. The rest of last week was full of work of various kinds. I have started meeting with a couple of people every Thursday to talk through business things. This may sound vague, but it really is a great time to get together with other like minded people and learn from each other. We report on the progress we have made that week and make goals for the next week. For me it is very helpful to have that accountability. I know I will be asked what I did to help my business grow and develop during the week and so I make working on my goals a priority. This week I have been working on numbers - uffda! My spreadsheet is done and I am excited to see how this is going to help me track my sales and expenses better!

I just finished reading the book Tribes by Seth Godin. It is a great book about leadership and I have learned a lot from it. One of the ideas that I had while reading the book was to get my fans on Facebook involved in my photography on a personal level. I created a game called Group Photo Project. I asked a series of 5 questions and took a photograph based on the answers. I had to take a photograph of water, that was wild, up close, at sunset and I wasn't allowed to edit it in any way. This was a fun game and a challenge to photograph! However, I did it and you can see the resulting photograph on my Facebook Page: https://www.facebook.com/GloryDisplayed. I am so blessed by those investing in me and in my business. I have met so many unique and amazing people through Glory Displayed and I can't wait to see how God grows this business and uses it to accomplish great things!

The big thing I am working on at church right now is putting a team together to plan the Perspectives Course we are offering in the Spring. I wrote about this last time. Pastor Doug and I were able to meet with our Regional Director and that was excellent. He answered many questions and got us some materials. The end of my week was spent contacting people and inviting them out to "coffee" to share with them what Perspectives is and why I want them on the coordinating team. I set up several appointments for this week. I already had to reschedule two that were supposed to be today because of health issues. I have a feeling this isn't a complete coincidence! I feel like every time I get ready to do something amazing my health takes a hit. It could be because I'm trying to take on too much or it could be the devil trying to take me out. Either way, I'd appreciate your prayers.

I know I have "overdone it" with my trips to Lake City and up north. However, I have also gotten the rest afterwards that is typically sufficient to get me back to a manageable pain level. Not the case this time. I felt better for a couple of days, but late Thursday afternoon I hit the wall again. Friday I felt okay so I went home and rode my motorcycle a little for the first time this year. That was excellent by the way. A good motorcycle ride through God's country is good for the soul! By Saturday night I was completely out of it. I was incredibly tired and when people talked to me I didn't really hear any of it. Yesterday was the worst day I have had in a long time. Every inch of my body hurt - a lot. Every muscle and joint was in pain. I had a fever and the butterfly rash across my nose and face and my head was killing me. I missed church and missed going to visit my dad on Father's Day. In fact, I didn't even have the energy to get up and find something to eat so my wonderful daddy brought me supper on his special day. (And that's just one of many reasons why my dad is the best dad ever!!)

Today I still hurt a lot, but it is better than yesterday. I have had several conversations with my doctor's nurse today and I ended up switching the way I take my once a week medication. I have been on the pill form of methotrexate for a long time. My doctor wanted me to switch to the injection form of the medication, but I was hesitant (let's just say I'm not a huge fan of shots). Needless to say, the pain was too much and I got to the point where I will try anything. So today I went in and got a shot in the...um, lower back area...sure, let's go with that. It hurt like a son of a gun, but I am hoping and praying it will help me feel better. I will go into the clinic every Monday through August to get this shot. I see my doctor again August 1st and we will figure out if I will continue with the injection or if she will send me back to Mayo to have them come up with a different medication to try. I also have a follow up appointment with my internal medicine doctor at Red Cedar on Wednesday. It has been over two months since my gallbladder surgery and even though I am eating a lot more, I haven't gained any weight. In fact, I weighed myself the other day and I'm down another couple of pounds to 95. Not exactly the ideal weight! Anyway, I really am not looking forward to more poking and prodding, so I'd appreciate your prayers.

The pain yesterday was so intense that I broke down and cried - a couple of times. Between the pain and the frustration it was just too much. During one of my little "moments" I was crying and asking God, yet again, why? Why do I have to go through all of this? Why does it have to hurt so much? Don't you know, Lord, that I have a very low pain tolerance level? You made me Lord, why did you make me like this? Then I asked Him... God, how can this possibly bring You glory? (and not in a nice way) I distinctly heard Him answer me deep in my spirit. He said that the sickness and pain does not bring Him glory, but when I praise Him in the midst of the pain, that brings Him great glory. Wow. I laid there in my tears for a minute and then I spent some time resting in God's loving arms, praising Him and glorifying His name. What a sweet time with the Lord that was!

1 Peter 4:12-13 says, "Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed." I understood this very much better yesterday! We all have struggles of various kinds. I want to encourage you to keep on clinging to the Lord. Call out to Him. He hears you, He understands your pain in a way that no one else can, and He loves you so much. When you reach out to God and praise Him in the midst of your pain, it brings great glory to Him. Other people are watching your life. When they see you give God glory and honor and praise in the midst of the struggles you are going through you are a living testimony. If we do this, we are sharing the Name of Christ and that, my friends, is worth all the pain in the world to me!

Fun in the Summer Sun

Happy warm weather, friends! It is finally starting to feel like summer in Wisconsin and I love it! Things are going much better than last time I wrote to you. This past month was rough, but things are looking up! I had a trip into the ER one night as the incision from my surgery got infected. A couple more trips to see the surgeon, a round of antibiotics that made me really sick and yet another week of not taking my pills made for a long couple of weeks. The good news is my infection is gone, I'm back on my drugs and I'm feeling better than I have in months. Hooray!!

In the midst of not feeling well and slowly recovering, I was able to do some fun things! I went to Barnes & Nobel to spend my gift card I got for Christmas. That was so much fun. I got three business books. You may think that's pretty boring, but I am quite excited about them! I am almost done reading "Tribes" by Seth Godin. Love it! I have already implemented an idea that I had reading that book and it worked marvelously! I also got "Integrity" by Dr. Henry Cloud and "Everyone Communicates Few Connect" by John C. Maxwell. I am looking forward to reading these as well!

This month I was able to have a meeting with the wonderful ladies of Fierce Beauty! We talked websites and business and did some scheming and planning for how our business can partner together in the future. I am excited to see where God leads both businesses for His glory!

Last week my roommates and I were going to go to C&MA General Council in Kansas City, MO. Plans changed and we were not able to go. We had the time off of work already so we did an internet search to see where we could go on a mini-vacation that was close by, cheap and fun. We ended up going to Lake City, MN for a couple of days. We got this great little hotel right on Lake Pepin. I brought by camera and tripod along and got some amazing photographs. Some of them are posted already on my website. I got the rest of the photographs I needed for my Unit One Photo Project and have ordered those. I'll be mailing them in as soon as they arrive. This vacation was productive, yet incredibly relaxing and refreshing. Just what I needed!

I came back from vacation refreshed and ready to get to work. I am excited for the things that I get to work on this summer at both of my jobs (church and Glory Displayed). I have several events coming up this summer where I will be able to sell my prints and cards. I will also have samples of tile work you can have made with my photographs. At church my big project is putting a team of people together to plan the Perspectives Course. We will offer this class starting in January. I am SO excited about this!

The other thing that happened this month? I turned 30! Yes, well, I don't have much to say about that :-) It's not so bad, really. I look so young that nobody believes I'm 30 anyway!

I want to leave you with what I have been hearing from God lately. This is one of four questions that we have to answer each week in staff meeting at church. Sometimes I don't like the question because I'm not so great at listening. I'm working on that! God has been telling me that I need to spend more intentional time with him. It is only when I spend time with Him, away from the noise of life, that I will be able to hear His voice. I used to be better at this, then life happened. I got busy and instead of taking time away with God each day I learned to multi-task. I talk to God as I'm getting ready in the morning and as I go throughout my day. This is a good thing, but God is telling me that it can't be the only thing. I've been thinking about it this way...think about your best friend. You hang out with them and talk to them as you go about life. Maybe you go for a walk together or have lunch together. Maybe you talk as you are working or watching TV. These things are good, but are they enough? There are moments when I have things to say and I want my friend to stop what they are doing, look me in the eyes and listen to me. I think it's the same way with God. He wants me to stop what I'm doing and spend time with Him alone. He has things to tell me, but He won't do it when I'm on the run. I need to stop, look in his eyes and listen to Him. That's what God's been saying to me lately. I'm going to go to my room now, close the door, put my phone on silent, and talk to God.