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 :-)