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.