The Hope of Glory

Howdy Ho, Ho, Ho and the Merriest of Merry Christmases! 

As I write this you may picture me sipping hot cocoa and listening to Christmas music. In all actuality I'm listening to Skillet's song Monster and munching on Pretzel M&M's :-) After all, Monster was my favorite thing today. Erin and I decided that for the entire month of December we would post our favorite things on Broken but Priceless Ministries' Facebook Page. We're sharing our favorite books, video clips, pictures, songs, etc...  Anything that encourages us or makes us laugh and helps us get through those difficult days are fare game to share. I'm having a blast sharing our favorite things! Feel free to visit our page and check out some of our favorite things :-)

Fatigue, Blood Clot & Thanksgiving

Hello friends,

I seem to be going through a strange sort of a flare that is making me incredibly exhausted. I'm not sure how to explain how tired and weak I've been feeling. There were a couple of days last week where it literally took me a couple of hours to work up enough energy to get out of bed. I think things are getting better. I was able to go to work today and go with my roommates to get groceries so I'm praying that means things are looking up in the "fatigued" department!

A Little of This and A Little of That

Hello friends,

Thank you for praying for Erin and I, we both seem to be on the mend and getting back to "normal" life...whatever that looks like! I go to work, I write, I read, I go to church, I do homework for my Sunday school class, I watch movies and (if I'm feeling really well) I might just go with my roommates to get groceries! It may not seem very exciting, but it's the life that God has given me right now and I'm very grateful for it.

I am really enjoying writing a blog post for Broken but Priceless Ministries each week. I am studying the book of Ephesians and relating it to chronic illness. However, as I read Erin's posts and as I write my own, I see that they apply to much more than chronic illness. I may be slightly biased, but I see that as we write about our own personal experiences with chronic illness and what the Bible has to say, those same lessons can be applied to many aspects of life. We all go through struggles, and we all need to hear Biblical truth in relation to suffering. If you need encouragement, click here and sign up for our blogs to be delivered to your inbox.

I'm particularly excited about what God taught me as I was writing Wednesday's blog post. Ephesians has long been my favorite book of the Bible. Through my study of it each week God is teaching me new things and helping me see things from a new perspective. More importantly, I'm getting to know Jesus better as I spend time talking with Him and reading His Word. He teaches me so many things, yet I can only write a portion of it. I'm sure many of you have experienced the same thing as you've prepared for a Bible study or a class you were teaching. The teacher always learns more than the student!

The middle of September I realized that my priorities were getting mixed up. I wasn't spending as much time with God as I wanted; as I looked at my life and what occupies my hours I realized that Facebook was a problem. I was wasting too many hours that could have been filled with better things. I deactivated my account and made a new one so that I can continue to be an admin for ministries I'm a part of. Can I tell you how freeing that was?! I spend significantly less time on Facebook and significantly more time with the Lord. Mission accomplished! Sure there are things I miss about it, but not enough to reactivate my old account. It is now scheduled for permanent deletion!

In all of my new found time to spend with God I am amazed at how He is teaching me the same things in several different ways. (Don't you just love it when He does that?!) The things that I am learning in my Sunday school class, the things I am studying for my blog posts, the things I am reading in my own time with the Lord and the books I am reading are all meshing together to the point that I can't remember where I read something! When God does that in our lives, He must be trying to tell us something important. It's a clue for us to take notice and listen up!

The last time I was at the Christian book store they had a copy of The Message on sale. If you haven't heard of it, The Message is a modern "common language" translation of the Bible. I've read excerpts of Scripture in The Message before, but I've never read entire chapters and books. I'm currently using The Message as I spend time with the Lord and it has been food for my soul! I've been reading the Bible since I could read and passages have become so common to me that I don't comprehend them like I should. When I read from The Message it is almost as if I'm reading the Bible for the first time. I see things from a new perspective, I'm shocked at some of the intensity of the language and I find the common language easy to relate to and apply to my life.

If your own time with the Lord feels routine, I encourage you to change things up. Read a translation that is significantly different from the one you are used to; try listening to an audio version of the Bible; try reading it out loud to yourself or to your family. Breaking the routine can create fresh intimacy with God and deepen our relationship with Him. Try it, then come back here and leave a comment telling us what you did and what you learned because of it. Let's learn from each other!

Take Up The Armor

Hello Prayer Warriors!

Erin and I need your prayers. The website and Facebook page were launched recently for Broken but Priceless Ministries. Blogs are being written, posts are being made and people are being encouraged. Erin and I are sick.

I haven't been feeling the best for a couple of weeks. Last week my not feeling so well turned into a very sore throat, fever and chills. A few days later that nasty cough that seems to attack my body a few times a year was back in full force. On Saturday I went to urgent care and got some antibiotics and cough medicine. I went to work for a short time today, but I'm wiped out. My cough feels like it is settling more into my chest and lungs and that's not a good thing.

When the website was first launched Erin experienced a great deal of physical pain. She posted this on her Facebook page: "Need some prayer. I have been in severe pain since yesterday. Haven't hurt like this in years. I have the feeling Satan doesn't want the website to go up tomorrow, but he's not going to get his wish." He didn't! The website went up, but we're both still experiencing sickness and pain. I got a text from Erin this morning saying that she has a fever and chills and will be going to the doctor tomorrow.

Erin and I think this is too much of a coincidence to be just a coincidence. It's not surprising that two girls who struggle with chronic diseases would be attacked physically at the launch of a ministry that seeks to encourage those in chronic pain. We have come to the agreement that we need to ask people to be lifting us (and this ministry) up in prayer.

Will you pray for us and for Broken but Priceless Ministries? Thank you so much dear friends, we really do need you!

Ephesians 6:10-20, The Message

And that about wraps it up. God is strong, and he wants you strong. So take everything the Master has set out for you, well-made weapons of the best materials. And put them to use so you will be able to stand up to everything the Devil throws your way. This is no afternoon athletic contest that we’ll walk away from and forget about in a couple of hours. This is for keeps, a life-or-death fight to the finish against the Devil and all his angels.

Be prepared. You’re up against far more than you can handle on your own. Take all the help you can get, every weapon God has issued, so that when it’s all over but the shouting you’ll still be on your feet. Truth, righteousness, peace, faith, and salvation are more than words. Learn how to apply them. You’ll need them throughout your life. God’s Word is an indispensable weapon. In the same way, prayer is essential in this ongoing warfare. Pray hard and long. Pray for your brothers and sisters. Keep your eyes open. Keep each other’s spirits up so that no one falls behind or drops out.

And don’t forget to pray for me. Pray that I’ll know what to say and have the courage to say it at the right time, telling the mystery to one and all, the Message that I, jailbird preacher that I am, am responsible for getting out.

Here We Go...

Hello again,

I know I just wrote, but I wanted to make sure you all know the big news. Broken but Priceless Ministries now has a Facebook page and the website is live! There are a few things to tweak here and there but it's ready for you to check out! Here's how you can keep up with Broken but Priceless Ministries:

Visit the website. On the homepage you can enter your email address in the box on the right. This way you will be e-mailed when we update the blog. Erin will be writing the blog post every Monday and Friday and I will be writing the post every Wednesday.

"Like" Broken but Priceless Ministries on Facebook!

I am really excited about the opportunity that God has provided for me to join this ministry. The mission of Broken but Priceless Ministries is "To help people living with a chronic illness see that even though their bodies may be broken, they are priceless in God's eyes." God has taught me so many things through my ongoing struggle with chronic illness. I want to encourage others, helping them to find God in the midst of their pain.

Thank you for joining me in the new adventure God is taking me on!

"The counsel of the LORD stands forever, the plans of his heart to all generations." -Psalm 33:11

Broken but Priceless Ministries

Good Camera + Amazing Seats = Some Pretty Fantastic Photos!

Hello friends!

I have some exciting news! How this news came about is such a neat story I just have to share it...

I am occasionally emailed alumni newsletters from Columbia International University, where I attended Seminary. I don't often read them but one day I decided to skim through it. As I did, an article immediately caught my eye. It was a story about a CIU graduate who started a ministry to people with chronic illnesses. I read all about it and looked Erin up on Facebook. We began emailing and sending each other Facebook messages and I was very impressed with who she was and what she was doing. I wondered what it would be like to be a part of something like that. I even talked to God about it!

A week ago Erin asked me if I would join Broken but Priceless Ministries. God is blessing the ministry and it is getting to be too much for one person. I prayed about it for a couple more days (I had already been praying about it before she asked) and on Saturday I told her yes! The last couple of days we have been trying to figure out how all of this is going to work. God has been confirming this decision in many ways. Even little things like the colors and theme of the website, the verses she chose, the opportunity to use some of my photographs on the website, I could go on and on. As I was exploring the website (which will launch next week) I kept thinking that Erin took all of the jumbled up thoughts in my head and wrote them in a succinct, beautiful way. I love how God has been working in both of our lives to bring us to where we are today. I love the friendship that has developed so quickly. I love that we work together so well even though we have never met or even talked on the phone. I can't wait to see how God uses Broken but Priceless Ministries in the days, months and years to come!

Right now Erin writes for the blog twice a week. She is a gifted writer and her posts are always encouraging and fun to read! Moving forward Erin will write every Monday and Friday and I will write every Wednesday. Today's blog post is in interview with yours truly, introducing me to the readers. You can read it HERE. The blog will move to the website when it launches next week.

In other news, my new routine and medication is doing wonders. I am feeling better than I have in a very long time. I am learning how to pace myself and live each day well. I threw my routine out the window when I went to a Nine Lashes concert with my brother and the Packers/49ers game with my dad and some good friends. I think I am just now beginning to recover from that week - but it was so worth it!

Meeting my favorite band was quite spectacular!

"Remember not the former things, nor consider the things of old. Behold I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert. The wild beasts will honor me, the jackals and the ostriches, for I give water in the wilderness, rivers in the desert, to give drink to my chosen people, the people whom I formed for myself that they might declare my praise." -Isaiah 43:18-21

Only Drastic Measures Will Do

Hello Friends,

I want to thank you so much for all of your prayers and support over the last several weeks. I am very happy to say that my seven days of appointments and tests at Mayo Clinic in Rochester, MN are over! *Insert happy dance here :-)

Many of you have been asking about my appointments and how I am doing. I appreciate that and apologize for my vague answers, however I wanted to have all the information and they didn’t tie everything together until today. If you’re not able to read all of this, please skip down to the paragraph in italics at the end.

Day one I had some testing done for stomach issues. All of the tests came back fine. The GI doctor and rheumatologist agree that the most likely cause of my problems is food moving too slowly through my digestive tract. When this happens the bacteria in my stomach (that is normal and good) builds up and starts hurting me instead of helping me.
 
Day two I saw a neurologist who diagnosed me with chronic headaches/migraines. I had an MRI on my head to make sure there was nothing else going on. That came back fine. He suggested some medications for my rheumatologist to consider.
 
Day three they made me see the department of Psychiatry and Psychology. I was tempted to cancel this appointment, but I knew they wouldn’t believe that I’m not depressed until I went. They told me I’m not depressed and doing well. It felt like a huge waste of time, but at least they believe me now! 
 
Day four was spent in the Fibromyalgia department where I was diagnosed with fibromyalgia along with chronic fatigue (not chronic fatigue syndrome, but chronic fatigue caused by pain and not sleeping well). Fibromyalgia is often caused by a severe trauma to your body. In my case they believe this trauma is the Undifferentiated Connective Tissue Disease that has been attacking my body for the past 4.5 years. They also recommended some medications for my rheumatologist to consider.
 
Days five and six were spent attending a fibromyalgia/chronic fatigue class. It was a class that taught us how to live with chronic pain. I can’t begin to tell you how helpful this class was. I wish I would have had it 4.5 years ago! One of the things that I loved about this class is that they were teaching Biblical truth, and a lot of it! They didn’t even know they were doing it. :-) I learned a lot of things that are going to be very helpful. They helped me develop a graded exercise program that is going well so far. They also taught me how to do things in moderation. I’ve been trying to do this, but failing miserably. They gave me some good suggestions on ways to do this and succeed. I will work a little bit every day instead of working two longer days and crashing in between. I also will try to go to bed and wake up at the same time each day. I will rest when it’s time, even if I feel like I can keep going. I have a track record of doing too much and then crashing and burning. I’m trying to avoid this in the future!

Yesterday, day seven, I had my last two appointments. I met with my rheumatologist who has been reviewing all of these appointments. He prescribed a medication that is used to treat both fibromyalgia and chronic headaches/migraines. It may also help me sleep at night and it could help my stomach issues as well. I love the fact that they didn’t give me four new medications, just one. I’m praying that this one little pill becomes my “miracle pill” and what God uses to help me feel significantly better and even, dare I say, go into remission! If it doesn’t work, we’ll try something else. I’m okay with that because ultimately my hope is in the Lord and not in a pill.

My last appointment yesterday was in the sleep department where I found out that I have insomnia (no really?! *insert sarcastic voice here!) I met with the nicest doctor who told me that what I’m doing is good, but made some slight changes. I should continue to avoid caffeine and naps. Because of the pain I have a hard time falling asleep at night and staying asleep. I basically need to learn how to sleep again. I will be in bed 8 hours a night (hopefully sound asleep). If I don’t fall asleep in 20 minutes or if I wake up and can’t fall back asleep, I need to get out of bed and do something really boring until I think I can sleep again. I don’t think this is going to be easy to do, but it will be a good thing once I get there. It’s better than laying in bed for 12 hours and sleeping for 5 of them! It (I) might not be very pleasant while my body learns how to sleep again. I apologize in advance if I’m a complete zombie or cranky! Please have patience with me!

One of the most important things I have learned is how I need to deal with the pain that I experience and how I interact with others. When a person experiences pain their body sends a signal up their spinal cord to their brain that tells them they are experiencing something painful. When a person experiences chronic pain (in my case caused by an autoimmune disease where my body is constantly attacking itself) the pathways that the pain signals travel on become well worn. It’s like taking the same shortcut every day. The path becomes bigger, the ruts deeper, the grass more trampled down. The same thing happens in my brain. Every time I experience pain, talk about pain, or think about pain, the pain pathways are reinforced, which makes the pain worse. What I need to do is create new pathways in my brain. Sounds easy, right? Not so much! One thing that I can do is distract myself when I’m in pain. I can do this by reading a good book, watching a movie, being silly with friends, whatever. Anything that distracts me and helps me focus on something besides the pain is good (well, not ANYTHING, but you know what I mean)! The second thing that I can do is something that I need your help with. I need you to not ask me how I’m feeling. Yes, you read that right, don’t ask me how I’m feeling. I know this is going to be difficult, but know that you will be helping me. I’m not going to completely stop talking about how I'm feeling. I will continue to update my blog and I’ll share with my roommates and family when I’m having a bad day and need to talk. I don’t want you to stop talking to me by any means. You can ask me how I’m doing and I will respond with how I’m DOING, as opposed to how I’m FEELING. You can help distract me and create those new pathways in my brain! I also need you to hold me accountable on this one. It’s going to be really hard to remember to not talk about how I feel because it’s so much a part of my world. However, that’s the point. I don’t want it to be such a big part of my world. I want Jesus to be my world and I want to focus on Him, not myself. Will you help me do this? Will you also help me remember to pace myself and do things in moderation and not overdo it when I’m having a good day? In Morocco I learned the saying, “Little by little the camel goes in the pot.” That’s my life now. Little by little I live my life. By doing a few things each day I will ultimately get more accomplished than doing many things once or twice a week (and feel better doing it)! 
 
I greatly appreciate each and every one of you who are walking on this journey with me. I don’t know what I would do without your prayers, your smiles, your silliness and your encouragement. You’re pretty amazing! 
 
“Do not lie to one another, seeing that you have put off the old self with its practices and have put on the new self, which is being renewed in knowledge after the image of its creator.” –Colossians 3:9-10

First of Seven...

Hello friends,

Many of you have been asking about my upcoming appointments at Mayo Clinic in Rochester, MN so here's a quick update. Dad and I will be heading down tomorrow night (Thursday) to spend the night. Friday begins the first of seven days of appointments and tests between now and the end of August. Friday morning I will have blood taken at 6:30 and have prep at 7:15 for a procedure done at 8:00am. The procedure should last anywhere from 2-4 hours and I will be sedated for it. Dad will drive me home Friday afternoon and hopefully I'll be with it enough to watch the Olympics Opening Ceremony with my roommates on Friday night!

This Sunday night we'll go back to Rochester and spend two nights there. I will see doctors in three different departments on Monday and Tuesday. I will get a little break and head back to Rochester August 7, 8 and 9. August 7th I will be tested for fibromyalgia and if it is confirmed that I have it, I will be attending a class on the 8th and 9th.

My rheumatologist will collect reports from all of these various departments and tests over the following days. I will see him on August 21st and hopefully have some answers and a new plan to improve my health.

I would appreciate your prayers for strength, endurance and peace as I go through all these days of tests and appointments. It is very tiring having such early mornings and long days. This is the first time I will be there more than one day in a row. I would also appreciate prayers for the various doctors I will be seeing. Pray for wisdom for them to know what questions to ask me and divine knowledge to know what is going on and how they can help me. As always please pray for wisdom for me as I try to remember to tell the doctors everything that they need to know to be able to help me as well as the ability to remember what they tell me during my appointments! 

Thank you friends, I really appreciate your prayers and support so very much!

What Color Will Your Crown Be?

Today we celebrate our freedom and independence.We spend time with friends and family, eat good food, blow things up and watch fireworks. It's quite a party for the birthday of our country! Many people are celebrating a little differently this year. Maybe you live in Colorado where fires are still blazing and you won't get to see any fireworks this year. Maybe you live in one of the many places across our country where temperatures and heat indexes are soaring...and your power is out.

Today looks a little different for me as well. Instead of going out and celebrating with family and friends I'm locked away in my apartment trying to stay cool. Heat and humidity are a very bad, and dangerous, combination for my body. When temperatures and dew points soar, I hibernate and eagerly await the day I can poke my head out and breathe some fresh air. Key word: breathe!

I'm going on day three of my hibernation. I think I'll have two more before the heat breaks, hopefully less! My roommates have been on vacation with their family so I've been here with nobody but my piggy from grandma to keep me company. I've been encouraged by visits from my dad to bring me food, get my mail and give me a hug! Monday was okay, it was only the first day. Yesterday was hard, it was 1:30 before I managed to get myself from my bed to the couch; 3:30 before I could keep my eyes open! Today is so much better. I feel pretty good, just the normal sore. I got a shower in and a Skype chat with a dear, sweet, wonderful friend. I'll see dad later today for my hug!

Do you know what else I've been experiencing? Joy. The joy that comes from deep in one's soul that can only be placed there by God Himself. God started working in my heart on Saturday night, speaking to me about some things. I couldn't sleep that night and was in a lot of pain so I went looking for these little booklets I have. One is called Fibromyalgia: When the Pain Doesn't Stop. It is written by Bob Smith, a physician and Biblical counselor. In this booklet there is a section that talks about God's purposes in pain and suffering. There are eight of them:

1. To bring glory and honor to Himself
2. To make you more like Christ
3. To help you grow in taking every thought captive
4. To help you desire what is most valuable in life
5. To demonstrate your character
6. To prevent you from sinning
7. To enhance your ministry to others
8. To encourage you to long for your heavenly home

As I was reading through this I realized that I have been fighting the diseases that are wreaking havoc on my body. I have been thinking of them as an attack of the evil one and something to be fought and despised. As I turned off the light and tried to get as comfortable as possible, God started speaking to my heart. What if these disease afflicting my body are a gift from Him? Take a minute to read through Romans 8, especially verses 16-39. As an heir of Christ it is my privileged to share in His sufferings. He has allowed my body to suffer for my own good. If it were not for my good, He would not allow it, He would heal me.

I finally fell asleep and was blessed to be able to go to church the next morning. My fantastic big brother picked me up in the Vette...riding to church in style! We were standing there, singing and worshiping God when I almost burst out laughing. We were singing "Lord, I'm breathing the breath that You gave me to breathe - to worship You, to worship You!" Um, Josie, that's not funny. Yes it is! You see, that very morning I was worried about making it to church. It was hot out and starting to get humid. I was afraid that I would have an asthma attack and I didn't want to go outside. However, I knew that it wasn't that bad yet and I could do it. Then we sang this song. It reminded me that each and every breath is a gift from God. As long as He keeps giving me breath to breathe, I'll keep worshiping Him! 

I am making a conscious choice to stop complaining and to be thankful for every good and perfect gift that God has given me. Even the diseases. Not because I'm some morbid weirdo, but because God loves me so much that He will use whatever means necessary to make me more like His precious son Jesus. I'm not suffering just for suffering's sake. It's not pointless. Those eight things I listed above, each and everyone of them is true and evident in my life. James 1:12 says, "Blessed is the man who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him." I'm pretty sure my crown is going to be full of beautiful green emeralds :-)

No matter what trials you are going through, remain steadfast. I promise you, it will be (and is) more than worth it! What color will your crown be?! 

Answered Prayers and Next Steps

Hello mighty prayer warriors!

I want to thank you so much for praying for me today. Last night I asked you to pray for very specific things as I went to Mayo Clinic in Rochester, MN today. It was a very long day (about 12 hours) and I was in a lot of pain, which I guess is a good thing when you're going to your rheumatologist. I am so excited to tell you how God answered our prayers in very specific ways. Below is what we asked of God and how He answered:

1. Pray that they can find my vein the first try when taking blood for lab work.
I had an amazing nurse who found my vein in the very first poke, not even any twisting or turning once she broke the skin. She was very nice and we discovered that she goes camping in my little tiny unincorporated hometown every year!

2. Pray that if there is more going on (or if the disease is flaring or progressing) that it would be very evident in the lab results.
The doctor didn't go over the lab results with me, but I saw on the printout that there were a few markers that were out of the normal range.

3. Pray that my rheumatologist would be a good listener, hear me out and take symptoms and quality of life seriously.
My doctor was an excellent listener today. He was very concerned and came to the conclusion all on his own that my quality of life is that of an 80 year old, not a 31 year old - and that is a bad thing. He answered all of my questions and is determined to figure out what is going on and get my quality of life back on track.

4. Pray that I would be a clear communicator, remembering everything that is important to tell him.
I brought three pages of notes with me, a copy for me and a copy for my doctor. I remembered to discuss all of the important things that needed discussing and I think I communicated clearly how I feel and how it affects my life.

5. Pray for wisdom for my doctor. That he would know exactly what the disease is doing and what medications or lifestyle changes are needed for my health to improve.
Keep praying about this one. There are several things that aren't typical and do not make sense. I will be going back to see more doctors there soon. (I'll share more about that below.)

6. Pray for agreement between my doctor in Eau Claire and my doctor in Rochester, that they would communicate with each other and work together.
Keep praying for this as well, there will be more to communicate about in the future and that working relationship between doctors needs to be established.

7. Pray for wisdom for my doctor in Eau Claire and myself to know if it is time to find a new doctor for second opinions - that it would be very clear to both of us.
It was very clear today that my doctor is taking this seriously and doing what is necessary to get me feeling better. No firing necessary!

8. Pray that I would be a blessing to those I encounter tomorrow and have "divine appointments."
I had a couple of good conversations with people today. Though I was too tired to get very deep, I pray that the joy of the Lord was evident in me.

9. And as always, pray that my physical body would be healed here on earth for the glory of God.
Keep praying for this!

As you can see, the Lord answered our prayers. Even though today was a long day and I was in a lot of pain, I couldn't help but rejoice as I watched God answer one prayer after another. I didn't get answers today, in fact, we have more questions than ever. What I did get was a doctor who is worried about me and is being very proactive in finding answers. There are several things going on right now and they don't all add up. My doctor is requesting records from Luther in Eau Claire and once he gets those he will be making me appointments to see several other doctors down in Rochester. He thinks I may be developing Fibromyalgia so I will be seeing someone about that. I will be seeing a neurologist to address headaches/migraines. I will be seeing someone in the GI department to figure out stomach issues. I think he mentioned a few other areas too, but I don't remember what they were. Now I just wait until I find out when I have to go back and see all of these people. It's a little overwhelming and I feel like I'm starting all over trying to figure out what is going on. However, I know that God is in control and He is taking care of me.

On the way home tonight I heard a song on the radio that I don't remember hearing before. No Matter What by Kerrie Roberts sums up exactly what I'm thinking/feeling right now. Whatever heartache you are going through right now, God knows. You can trust Him. He is with you, put your hope in Him.

I’m running back to Your promises one more time

Lord that’s all I can hold on to

I gotta say this has taken me by surprise, but nothing surprises You 

Before a heartache can ever touch my life 

It has to go through Your hands 

And even though I keep asking why, I keep asking why

No matter what, I’m gonna love You 

No matter what I’m gonna need You 

I know that You can find a way to keep me from the pain 

But if not, if not, I’ll trust You no matter what, no matter what 

When I’m stuck in this nothingness by myself 

I’m just sitting in silence 

There’s no way I can make it without Your help, I won’t even try it 

I know You have Your reasons for everything so I will keep believing 

Whatever I might be feeling, God You are my hope 

And You’ll be my strength 

Anything I don’t have You can give it to me, but it’s OK if You don’t 

I’m not here for those things 

The touch of Your love is enough on its own 

No matter what I still love You and I’m gonna need You 

No matter what I’m gonna love You, no matter what I’m gonna need You 

I know that You can find a way to keep me from the pain 

But if not, if not, I’ll trust You 

I know that You can find a way to keep me from the pain 

But if not, but if not, I’ll trust You 

No matter what 

No matter no matter what 

No matter no matter what 

No matter no matter what 

Songwriter: Chuck Butler, Kerrie Roberts, Tony Wood

pearl in the sand

Hello friends, 

I’m sorry for my tardiness in getting this month’s blog posted. A couple of weeks ago I got to go on vacation! Hurray for vacation!! My roommates, their sister and I went to visit their grandparents in North Dakota. It was lovely. They have such a wonderful place, surrounded by big trees, large barns and long gravel roads. We indulged in wind therapy, their grandpa took us flying in his airplane, their grandma took us shopping and we ate so much good food! Oh, did I mention we also looked at pictures and watched old family videos? Oh the stories I could tell J I took so many photographs. I’ve finally managed to get them on my computer, but they are on my external hard drive that I can’t reach…I’ll post pictures later!

We got back Monday of last week. Tuesday I worked, Wednesday I crashed. I don’t think I got out of bed that day at all except to go to the bathroom and take my pills! Thursday I was still in pain, but managed to make it to my chair in the evening. Friday I was starting to feel better, but thought I better rest one more day, just to be safe. 

Saturday morning I was awakened about 5:30 with a sharp pain in the back of my head, the worst headache I have ever had. I got a cold pack to put on it and tried to go back to sleep. Later when I got up it was still there, getting worse. I was having vision problems and was very dizzy. I went to the Urgent Care/ER to get it checked out with the words brain aneurysm and tumor running through my painful head. My attending physician wasn’t just any doctor, it was MY doctor, praise the Lord! She would take me seriously and is familiar with my crazy health history. She did some neurological tests, a few of which I failed. She had a CT scan done of my head and started me on some medication through an IV. It took three nurses three tries to get it completely in a vein. The first one didn’t even bother trying, the second one tried in both arms to no avail and the third one shoved it in my hand and I cried like a baby. At least I forgot about my head for a few minutes! The first medication didn't touch it, then they gave me morphine and some anti-nausea medicine and I finally started to feel better. My doctor was very happy to tell me that the CT scan came back fine. I was experiencing my first migraine headache, which I learned can mimic a tumor or brain aneurysm the first time you get one. We were all quite concerned for a while there.

If this wasn’t enough, while I was at the ER I had intense pain in my chest/rib cage area. I've felt this before; it comes on fast and lasts for a few seconds to a minute or so. This time it lasted several minutes and my doctor was able to come in and check it. I don't know how to explain the pain other than an intense pain along the entirety of the front of my rib cage. It's like someone is grasping my rib cage and bending it in towards the middle, or maybe like my organs are all of a sudden too big to fit in my rib cage and are trying to break out. My doctor pressed on certain areas and it was so painful. Again the tears flowed, it had been such a long, painful day. She said the good news is that it isn't my heart and I'm getting enough oxygen, I just need to remember to breathe. It is part of Undifferentiated Connective Tissue Disease. The connective tissues and muscles around my ribs swell and press on my rib cage and cause a great deal of pain. It's so painful that I can't catch my breath and then I have problems breathing...a viscous cycle to be sure.

Five hours later my doctor gave me medication that I can take at home if I get another migraine and I got to go home. I was so grateful for that medication because I got another migraine the next day. I’ve been experiencing what I call a “pain hangover” ever since. I’ve still had headaches every day, but not migraines. I’ve been so exhausted that I can hardly keep my eyes open. I keep falling asleep in the middle of things. It’s been difficult, especially today, to find words for things. Between my stomach issues, headaches, migraines and the “normal pain” that is attacking new areas, I feel like I’m falling apart!

As I look back at this weekend (though it was horrible in many ways) I see that God was very present and blessed me in many ways. First of all, my favorite doctor is on maternity leave. She shouldn't have been there, but she was! To my great joy she was filling in for someone on Saturday. She loves Jesus and having a sister in Christ take care of me was a blessing. She is compassionate and caring, she knows my history and has the wisdom to make connections that another doctor couldn’t/wouldn’t make. It was also a blessing that I had one of those episodes with my ribs when I was there. I forget I get them because they last such a short time and I only get them occasionally. However, they are always scary and I wonder what is causing them. Not only did I have an episode in the ER, but it was long enough for my doctor to come and check it out while it was happening. Now I know what is happening and it isn't so scary. Still painful, but less scary!

These past several days I have had a lot of time on my hands. Typically when I’m stuck home because of my health it is because of pain. Pain is uncomfortable, but I can still watch movies or listen to music or read a book. Sometimes I even work from home. However, with these headaches (even the ones later that weren’t migraines) the light bothers me, noises bother me, I can’t keep my eyes open long enough to do anything. So I lay in bed with my curtains closed. I cry a little and I’m angry at God. Oh, I still love Him, but I’m ticked that He hasn’t healed me yet. I ask Him again why I have to go through all of this. I try to make Him understand that I would be of much more use to Him if I was healthy. I fall into a dreamless sleep and wake up with the same questions running through my head. Finally I acknowledge that His plans are best and if this is the way He wants to use me, then so be it. I trust Him and I trust His plan.

Finally I could keep my eyes open a little longer and could read to pass the time. I decided to read a book that I won from Susie Larson’s Book Giveaway Wednesday on Facebook. “Pearl in the Sand” is a novel about the life of Rahab. It is written by Tessa Afshar and is the best book I have read in a long time. God used it to speak to the depths of my heart. There is one point in the book where Salmone is trying to make Rahab understand her worth. They are married now and are both struggling with how to accept her past and have a good marriage. Salmone had given her a pair of gold and pearl earrings that had belonged to his mother when he asked her to marry him and at this point in the story she was frantic because she had lost one of them. They were her prized possession and now one was missing. After looking for hours Salmone found the earring. It was covered in sand and had been walked on by several people. Rahab was so excited that he had found it, but Salmone told her to leave it, it was ruined. She argued with him and told him that it wasn’t ruined, it just needed to be washed well and a few of the wires bent back into place. He wouldn’t let her take the earring until she understood that she was that earring. She had been abused and trampled on and discarded by others, but she was still of great worth.

Don’t you see God looks upon you the way you look upon this delicate jewel? Only with so much more tenderness and delight. Do you remember the story of creation? It tells us that His hand fashioned us – fashioned you – in His own image. The One who created you in His image, the One who called you very good, must consider you to have profound worth. You are like this precious jewel to Him. … And you have never lost the value you were born with.(pg 284-285)

We all walk through the valley sometimes and when we’re there, it is easy to think that we are worth less than when we were on the mountaintop. It is easy to believe that we have lost our value. It is difficult to remember who we are in Christ and that He loves us just as much today as the day He made us. Read that quote again. Let it sink in to your very soul. These words weren’t just for Rahab, they weren’t just for me, they are for you as well. Yes, this is a fictional novel based on a real woman, but those words are very true. You are loved, you are valued and you are of great worth! If you would like to read the Biblical account of Rahab, it can be found in Joshua 1-10, the book of Ruth and Matthew 1:1-17. As I read through the genealogy in Matthew 1 something else struck me about the people listed there. I’ll save that for another post!


(I have to say, I look at the story of Jericho in a whole new way after reading Pearl in the Sand. Find out more about the book and author here.)

A Storm is Coming

I want to thank you for your prayers and overwhelming support over the last couple of days. The days have been difficult, but your encouragement and prayers have been a blessing.

I got a phone call from my doctor's office in Rochester yesterday afternoon saying that he couldn't talk about medicine changes until he sees me. His next available appointment is June 15th. I took the appointment and called my doctor in Eau Claire today. She said that she called his office as requested yesterday and they said that they had already set up an appointment to see me and wouldn't talk about med changes until then. She asked me to keep that appointment and see what he says. If he is helpful and changes my medication, great. If not, we will seek a second opinion at that time. And by second opinion I mean we'll fire his butt and find a new doctor! I know this is the best option. He knows my history, I won't have to go through more testing (except lab work) to see him and he did mention changing medications at my last appointment. However, that was when he thought I was having an allergic reaction to them, not because they weren't working well enough (which they haven't been for a while). I've been off and on medications since October. I've been stuck in bed for months, then got a boost of energy with prednisone. Now the prednisone is causing its own problems and I need to go off of that.

Right now I'm reading through a series that I loved when I was a kid. It's a fun, easy read and takes my mind off of how grumpy I feel. I just read about a run-a-way team of horses. I feel like I'm in the back of the wagon holding on for dear life and not having a lick of control over what happens to me. It's a terrible feeling! But you know what? When I feel like I am loosing control and when I come to the end of my own strength, that is when the light of Christ shines brighter than ever. My dear friend Emily just sent me an e-mail. She reminded me of Psalm 28:8. It says, "The Lord gives strength to his people; He is the saving refuge of His anointed." I know that my God is for me. He will give me strength and He will be my saving refuge.

Outside there is a storm brewing. The winds are howling, our little apartment is shuddering and the sun has hidden itself behind the grey clouds. When the weather changes, my body hurts. Today is no different. I feel like another storm is coming. The Bible says that "our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand." -Ephesians 6:12-13 (NIV) Will you stand with me? Will you help me fight? When my physical body is attacked, it is hard to put on the full armor of God and stand. When you take a beating it is so easy to just lay down and give up. But I will fight! I will put on the full armor of God and stand against the attacks of the evil one.

There is a song that has been running through my head today. It's called Before the Morning, by Josh Wilson. It's where I am right now. It's dark but the morning is coming! I leave you with the words of the song so that you also can be encouraged today in whatever trials you are facing:

Do you wonder why you have to feel the things that hurt you?

If there's a God who loves you where is He now?

Maybe, there are things you can't see

And all those things are happening to bring a better ending

Some day, some how, you'll see, you'll see

Would dare you, would you dare, to believe,

That you still have a reason to sing?

'Cause the pain you've been feeling

It can't compare to the joy that's coming

So hold on, you got to wait for the light

Press on and just fight the good fight

'Cause the pain you've been feeling

It's just the dark before the morning

My friend, you know how this all ends

And you know where you're going

You just don't know how you get there so just say a prayer.

And hold on, 'cause there's good for those who love God,

But life is not a snapshot, it might take a little time

But you'll see the bigger picture

Would dare you, would you dare, to believe

That you still have a reason to sing?

'Cause the pain you've been feeling

It can't compare to the joy that's coming

So hold on, you got to wait for the light

Press on and just fight the good fight

'Cause the pain that you've been feeling, 

It's just the dark before the morning

Yeah, yeah, before the morning,

Yeah, yeah

Once you feel the weight of glory

All your pain will fade to memory

Once you feel the weight of glory

All your pain will fade to memory, memory, memory, yeah

Would dare you, would you dare, to believe

That you still have a reason to sing?

'Cause the pain that you've been feeling

It can't compare to the joy that's coming

Come on, you got to wait for the light

Press on and just fight the good fight

'Cause the pain that you've been feeling

It's just the hurt before the healing

Oh, the pain that you've been feeling,

It's just the dark before the morning

Yeah, yeah, before the morning

Yeah, yeah, before the morning

Will You Pray?

Blow-fish (photographer unknown)

Hello friends,

I have something that I would like to ask you to pray about with me. As most of you know I have two rheumatologists. My rheumy here in Eau Claire is amazing. She really cares about me and is doing everything to help me feel better. We have talked for quite some time about changing the main medication I am on (methotrexate). Even though it helps a lot, it doesn't help enough and it seems like the negative side effects are starting to outweigh the benefits. I have been off and on it since October for various reasons. She thinks it is time to make the switch. I also see a rheumy at Mayo in Rochester, MN. My doctor in Eau Claire sends me there when she wants a second opinion. My doctor in Eau Claire and I have both been trying to get a hold of my doctor in Rochester and it has not gone well. He hasn't been returning calls or letters. I was told that we could call him when I met with my doctor in Eau Claire on Tuesday afternoon. When we called we found out that he was in a completely different city that day! My doctor and I were both frustrated. We were told that he would call her back on Thursday or she could try calling him again if she doesn't hear from him.We are not very hopeful that she will be able to talk to him and that he will be helpful. If he isn't we are going to try a different doctor that she has had better luck working with.

All that said, please pray that my two rheumatologists would be able to connect tomorrow. Pray that they would have a good conversation and agree on a new mediation. Talking to both of them, they have very different ideas of what to try next. Pray for wisdom for both of them, pray for a willingness to listen to each other and pray for peace for me as I wait to hear what they decide (or don't decide).

I haven't been feeling well. The last month I've been on a prednisone experiment. Today I started tapering off of that because the side effects are outweighing the benefits. The only good thing that has happened is that I have gained weight being on the prednisone. However, I have also acquired what I call the "prednisone puff." My face is swelling from the meds and it hurts because of the disease. The best way I can describe it is like a blow-fish, puffy face with pins sticking into me.

Today was another pretty bad day. I don't feel well, I don't sleep well at night which makes me not feel well during the day and I'm concerned about new medications and what all of that will mean. I know the side effects of the numerous medications they are thinking of trying next and none of them are good. I know God is in control and that He already knows what is going to happen. I know that my life is not my own and I can't control it. However, I can control how I respond to the things that happen to me. I am trying to stay positive and put my trust in God. Putting my trust in God is the easy part, staying positive is more of a challenge. It's hard to be positive when you're so tired and feel so sick. It's like having a bad case of the flu that never goes away...ever. There might be a day here or there that isn't as bad as the others, but it's always there. I don't want you to feel sorry for me, I'm just trying to help you get a picture of how tired I feel right now and much I need your prayers to get through this most recent bump in the road. I'll make it through with God at my side holding my hand. I'll come out on the other side because of your prayers and encouragement. What would I do without all of the people who love me, pray for me and encourage me? Thank you!

My friend Katie Jo shared some verses on Facebook last night and they were just what I needed to hear right now.

Isaiah 41:10 "So do not fear, for I am with you; do not be dismayed, for I am your God; I will strengthen you and help you; I will uphold you with My righteous right hand."

Romans 8:28 "And we know that in ALL things God works for the good of those who love Him and have been called according to His purpose."

Jeremiah 29:11 "For I know the plans I have for you," says the LORD, "plans to prosper you, and not to harm you, plans to give you hope and a future."

Thank you Katie Jo!

El Roi

Hello Friends, I pray you are all doing well and enjoying this burst of summer we're having! I find it difficult to wrap my mind around t-shirts and flip flops when we should be buried in snow...but I'm not complaining, I love it! So much has happened this month and it is taking me a while to process through everything and decide how to share with you what God's been doing in my life.

I'll start with the big news. Last month you were praying for me as I awaited the decision from the Judge about my disability case. A couple of weeks ago I found out that the Judge gave me a fully favorable decision and that she back dated the start of disability to January 2008. This is huge people and let me tell you why. When you are granted disability there are waiting periods before you get assistance with health insurance. Long waiting periods. Because my case was reopened to 2008 I have already met all of those waiting periods so my insurance can begin immediately. I can't even begin to tell you what a huge blessing this is. So thank you, thank you, thank you for praying! God answered and He answered big.

There's another way that God has been providing for me. Some of you know that for the past several years I've been driving a big red jacked up Jeep. I love the Jeep, it's so much fun and I've never been stuck in it! The sad news is, the last couple of months it has been getting more and more difficult to get in and out of the Jeep. It's too tall, and my muscles and joints are too painful. So, last week we traded the Jeep in on a beautiful Dodge Avenger R/T. It's a car, and it's been a long time since I've had a car. However, this one is amazing. It's a beautiful blue, it has a lot of power and it's so much fun to drive! I never thought I would have such a nice car and I'm feeling quite spoiled and very blessed. I forgot how nice it is to drive a vehicle you don't have to work hard to drive! I don't know if you're one of those people who names their vehicles, but I am. I have named my new car Elroy. This may sound like a silly name for a car, but there's a great story behind it! You see, El Roi (el ro-ee) is Hebrew for God Who Sees Me. You find this word in Genesis 16:13. Hagar is fleeing from Sarai and an angel of the Lord appears to her and speaks with her. "She gave this name to the LORD who spoke to her: "You are the God who sees me," for she said, "I have now seen the One who sees me." God has provided so much for me and now every time I drive Elroy, I am reminded of God, who sees me and provides for me!

God has been teaching me about giving Him glory in all situations and all circumstances. It's been a rough couple of months with lots of ups and downs with my health, but through it all, God is faithful. He is good and He is worthy of all praise and honor and glory. I'm back on all of my medication and I'm doing a prednisone experiment on top of the regular drugs. Right now I'm on 15mg of prednisone a day, tomorrow I drop down to 10mg for a week. I started at a week of 20mg. I'll continue on down to 5mg, unless I notice a big change before then. I think the experiment is going well. I'll see my rheumatologist in a couple of weeks to go over the results. We'll also discuss changing some of my medications, which would be quite the process. Please pray for her the next couple of weeks as she researches different medications and tries to get in touch with my other doctor in Rochester. Pray for wisdom for both of them as they decide what medications could work better for me and have less side affects. It has been good timing though because once the initial couple days of insomnia passed, the prednisone has given me more energy. This has been really helpful as it's been a busy couple of weeks. The prednisone has also been helping me to gain some of the weight back that I have lost, which is a good thing.

Soon we will celebrate Easter. I've been thinking about Good Friday and Easter, reflecting on what God did for us. Easter, like everything else is all about glorifying God. Jesus sacrificed His life not only to save ours, but His sacrifice was an act of obedience to God. Through Jesus' death, God was glorified. We have been going through the book of John as a church and a couple of weeks ago we talked about John 13:31.

As soon as Judas left the room, Jesus said, 'The time has come for the Son of Man to enter into his glory, and God will be glorified because of him. And since God receives glory because of the Son, he will soon give glory to the Son.' (NLT)

Jesus suffered more than I ever will and He was obedient to God, even to the point of giving up His very life. This has been a challenge to me. I often ask God to make me more like Jesus, to make me a reflection of Him. I think that many times we seek to be like Jesus, but we forget about all of the pain and suffering that He went through. We want the good things, but not the hard things. God never promised that our lives would be easy if we follow Him. In fact, He has told us that we will face many trials and that we should rejoice in them. Yes, I said rejoice!

Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking in anything. If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. (James 1:2-5, NIV)

So yes, I rejoice in my sufferings because through them God is answering my prayer to become more like Christ. I am learning to glorify God in all circumstances. He is turning my heart of stone into a heart of flesh. For that, I am incredibly grateful. I have to laugh when I wrote that because although it is true, I am on prednisone right now and it makes me grouchy and my heart a little bit harder (see The Devil's Tic Tacs). I'm trying, and God's working in me. He's working in you as well. I want to encourage you that if you are suffering or going through a hard time that God sees you. He knows what you are going through and He loves you. Reach out to Him, ask for wisdom and the peace which surpasses all understanding. Go with God this month and enjoy the ride!

Do I Tell or Don't I?

Hello again friends,

It has been a little over a month since I last wrote and what a long month it was. What was supposed to be maybe two weeks at my parents place turned into a little over a month. Once I heard back from my doctor, I was given the go-ahead to start up the methotrexate injections again. If all went well, I could start up the plaquenil three weeks later. Thankfully I heard back from him on a Monday and was able to make an appointment to go get shot on Tuesday. When I went in for my shot they (thankfully) realized that the shot had expired and they had neglected to make me a new one. So I went back on Wednesday and got my first shot in I don't remember how long! When I started up my methotrexate again I stopped taking the prednisone. I thought this was a good idea because it was given to me to help with the pain while off my other medications and the nurse didn't mention it when he called. What I failed to realize is how long it would take the methotrexate to kick in because I had been off of it so long. I should have tapered the steroid down over the course of a couple of weeks. Needless to say I had a couple of really bad weeks. It may have been steroid withdrawal as I had several of the symptoms, or it could have been the fact that the meth (as I affectionately call it) hadn't kicked in yet and this is just how I feel when I'm not on any medication. The last two months were terrible to say the least. I was in a lot of pain (both muscle and joint), the fatigue was out of control and a zillion other things I just don't want to go into! I missed about two months of work because of this silly disease. The good news is that I'm feeling much better and the medications they gave me for the Skin Writing disease have stopped my itching almost completely. Yay!

A week ago today I moved back into my apartment with my wonderful roommates who I missed dearly. It was great to be back even though I was still pretty sore and tired. Monday was a special day. I have been debating in my head for a long time if I want to tell you something or not. My life has pretty much been an open book, yet I hesitate to share this because I don't know how people will respond. You're all wonderful so I don't know why I'm afraid to tell you :-) Maybe it is because by telling you I am admitting how much this disease has taken over my life. I'm admitting that I need help and can't support myself. I'm admitting that many of the things I should be able to do I can't. I have always been a hard worker, going above and beyond what was required of me. Now I'm not able to do that. Not all the time anyway. Not even most of the time. But these things are all true so I must tell you. It is a part of my current reality and I am going to share it with you.

Monday morning I had my disability hearing. There, I said it. I have been working on getting disability for several years now. I never told you because it is such a long process and it seemed like it would never happen. I was also embarrassed. I know I shouldn't be, but I was. There are so many negative things that people think when they hear that someone is on disability. Yes, I know I am generalizing but you know there are stereotypes out there about people who are on disability. When I Googled "disability stereotypes" words like burden, pitiful, outcast, crooked and lazy came up. Like all stereotypes, those things may be true for some people, but certainly not the majority. Some people take advantage of the systems that are in place to help people who need it. I think what I was struggling with the most was coming to terms with the fact that right now I am one of those people who needs help. The fact that Undifferentiated Connective Tissue Disease is an "Invisible Illness" doesn't help matters either. Usually when you see people who are disabled, it's obvious. They are in a wheelchair or have some other outward sign of their illness. When people look at me, I look fine. Most people can't tell I'm sick by looking at me. It's kind of like the dirty looks I get from people when I park in a handicap spot and get out of the car looking fine. If I had a cane or a wheelchair no one would give it a second thought. I always feel a little guilty. But I shouldn't. My doctor has tried to get this in my head for a long time and I think it's finally sinking in!

There are thousands of people out there who are just like me. I would never judge them as harshly as I have been judging myself. It's funny (well, not really) how quickly compassion can turn into pride; and I have always struggled with pride. I am a hard worker. I'm independent and proud of it. I don't need help from anyone. But I do. It's humbling to admit that I need help. It's humbling to sit in a chair in the bathroom and have your mom dry your hair because you can't even do something as simple as that. It's humbling to not be able to take a shower every day, because you don't have the strength or energy to do so. It's humbling to have people drive you to appointments because you know you'll be do exhausted when it's over to drive home safely. It's humbling to need your roommates to open things for you....all the time! (Okay, that one isn't too humbling, I've never been able to open things easily!)

Life is humbling right now and you know what? I'm thankful. Through this process I have learned so much. I have an excellent lawyer who has helped me to understand disability like I have never understood it before. I am reminded to stop before I judge someone because I don't know what they are going through. It's so easy to judge...to be prideful. It's so easy to look at someone and judge them in a split second and rejoice in the fact that you've got things together. It's a lot more difficult to stop, ask questions, become involved, help, and just maybe learn something from them.

There is a fine line between being proud of yourself and your accomplishments and being prideful. I for one, cross that line much too often. Being humbled isn't a fun thing to go through, but it's necessary to become more like Christ so I embrace it.. UCTD is a part of my life. While it's here I am going to redeem it. I'm going to learn from it and I'm going to pray to God that He will help me become a better, more humble, more loving person because of it.

Is there any encouragement from belonging to Christ? Any comfort from his love? Any fellowship together in the Spirit? Are your hearts tender and compassionate? Then make me truly happy by agreeing wholeheartedly with each other, loving one another, and working together with one mind and purpose. Don't be selfish; don't try to impress others. Be humble, thinking of others as better than yourselves. Don't look out only for your own interests, but take an interest in others, too. (Philippians 2:1-4, NLT)

I would appreciate your prayers. I will get a written letter from the Judge in the next 30 days or so telling me her decision. Please pray for a favorable decision so that I can get some help financially, and more importantly, with medical bills and insurance. If I am granted disability I will still be able to work part time because I make well under the required amount.

I want to leave you with a story. I had no idea what to expect during the hearing. Wisconsin is so backed up with disability cases that I had a Judge from California. We had the hearing by teleconference; the Judge was at her bench in California and I sat in a little room in Eau Claire, WI. We saw each other on giant TV screens. After all the questions were asked and the testimonies given, she took a moment to encourage me. She told me that even though I was caught off guard and surprised, and even though this has been hard, God was not surprised. She didn't need to say that. It wasn't relevant to the case, but it is true and I was greatly blessed!

I'm sorry if this post is a little scattered, I've had a lot of thoughts running through my head the past couple of weeks :-)

The Skin Writing Disease

First of all, I want to thank you all so much for your prayers today. My appointment at Mayo went well, the doctor was knowledgeable and figured out what's been going on. Praise the Lord! Unfortunately there is a new disease to add to my ever growing list, but this one isn't lethal so that's good! I have something called Dermographism, which is also known as the Skin Writing Disease. Basically, when my skin is stroked, scratched, rubbed, slapped, bumped, etc... hives develop and the skin becomes raised and inflamed. It can also be triggered by stress, clothing, watches, heat, cold or anything that causes stress to me or my skin. Now I know why the carpet in our apartment (and a zillion other things) gives me hives and makes me itch like crazy! The disease is called the Skin Writing Disease because you can write on your skin and in a few minutes raised hives will appear. Some artists with this disease use their skin as their medium! Unfortunately for me, the Dermographism is really itchy so my doctor has prescribed Allegra long term for the rashes along with a steroid cream to help with the itching. I'm looking forward to getting on this tomorrow and stopping this incessant itching!! Somehow this is related to my asthma. Super strange, right?!


As far as the hair loss goes he thinks that is from loosing so much weight so quickly. When you're malnourished you tend to loose your hair as well. Go figure. The good news is the Prednisone I've been on for the last month has given me the munchies and I've gained about 7 pounds. Only 13 more to go to be healthy again! 


Overall this was a pretty good appointment. I'm really grateful that I got answers. As I've been reading about Skin Writing Disease it explains exactly what's been going on. Praise the Lord for dermatologists...and they didn't even have to biopsy (aka cut out chunks of me) anything! One rheumatologist thought that my UCTD was becoming more active, the other thought that I was having an allergic reaction to my medication. They were both wrong! Well, it probably is related to UCTD in some way. No one is really sure what causes this, but it seems to be linked to autoimmune diseases so I guess it makes sense. It's great news that I'm not having a reaction to my medications, hopefully I'll be able to get back on them asap. I need to wait for the dermatologist to send his notes to my rheumatologist and then he will review them. Someone will give me a call and let me know what meds I can go back on. Pray that this would happen quickly as typing up notes can take a long time in Rochester. I can't believe how busy it was there today. All of the doctors must be back from Christmas break!


So, that's the news. I also have some atypical moles I need to keep an eye on to make sure they don't turn into skin cancer. That's all I need! I've had them my whole life, no problems yet, so I'm not too concerned. He wants me to see a dermatologist once a year to keep an eye on them. Oh joy, more doctors :-/


Again, thank you for your prayers, bunches and bunches! On our way home from Rochester dad and I continued through southern Minnesota, through Iowa and into Wisconsin to go to Cabela's in Prairie du Chien. Then we took the scenic route back across the river to Iowa, Minnesota and finally back home to Wisconsin. We saw lots of eagles, hawks and beautiful scenery! I can't believe I didn't have my camera with me so we're going to have to go for a drive again. I have so many good shots lined up! What a fun afternoon and a beautiful day for a drive :-)