Stay Free, People!

I get a daily devotional in my e-mail inbox from Max Lucado. Here was today’s:

“In 1965 Howard Rutledge parachuted into North Vietnam and spent the next several years in a prison in Hanoi, locked in a filthy cell breathing stale, rotten air trying to keep his sanity. Few of us will ever face the conditions of a POW camp.

Yet, to one degree or another, we all spend time behind bars. After half-a-century of marriage, my friend’s wife began to lose her memory.  A young mother called, just diagnosed with Lupus. Why would God permit such imprisonment?  To what purpose?  Jeremiah 30:24 promises, “The Lord will not turn back until He has executed and accomplished the intents of His mind.”

This season in which you find yourself may puzzle you, but it doesn’t bewilder God.  He will use it for His purpose. Please be reminded…You will get through this!”

I read this and thought, “I don’t want to be behind bars!” This sense of self imprisonment could apply to anyone at any time in their life. What stood out to me was lupus (i.e. autoimmune disease), behind bars, and God. Let us not put ourselves behind bars at any point in time because of our physical battles. Lord, please….

I can’t help but feel sometimes that we are hand selected in a good way to carry certain burdens. It has certainly impacted every little corner of my life to be faced with the loss of my health. It is important to me to try to keep it in perspective. I can’t personally do that without God.

I pray this finds everyone free today!

Be Healed!

I attend a Bible study once a week. I enjoy it and look forward to it. It’s a great group of ladies and it helps me to stay disciplined about getting in the Word and having my socks blown off. We are reading through the book of John right now and our discussions are led by what impacted us in our time reading.

The subject of healing came up today as a result of the reading. My group leader and one other gal in our group of nine has an inkling of the state of my health. Part of today’s group discussion went something like this, “You know, healing is a choice. You have to choose to be healed.” Heads nodded around the table. “People get so comfortable being ill that they aren’t allowing God to heal them.” I didn’t say anything.

This may be true for some people. But blanket statements about healing hurt my feelings. I wanted to say, “I have worked my butt off and given up SO MUCH to care for my body and attempt to restore my health. Walk a day in my body with my pain and tell me it’s something you can get “comfortable” with.” I have refused to give up on my body (despite continued setbacks) and I have prayed with my face to the ground in total submission of His will and plan for my life. But here we are ladies and gentlemen, I’m still rockin’ a disease. And I am not any less of a person or a Christian because of it.

I know I’ve said it before, but my heart is heavy, so here it comes again. It is very difficult at times to be a Christian, have a chronic disease and be transparent with people. You can take away my belief in God and the same applies. It is difficult to have a chronic disease and be transparent with people. Simply because we all judge each other. When you add the fact that I am a Christian, you add another layer of judgement–healing comes into play from a God perspective.  It is unfortunate that it can make being real with people difficult and uncomfortable because of the association healing, prayer and faith have. And the way I’ve been made to feel is if you ain’t healed, when then by golly you must not be praying enough or getting right with God. I say, not true and don’t let it hinder going deeper with God or the people that do accept that you have done and are doing all that you can do to make your body right. It is especially disheartening when judgement is passed by someone who doesn’t know me very well or have a clue what God is doing in my life.

During the time that I was sick recently, I was on the phone with the mother of my son’s friend.  She knew I wasn’t feeling well. She doesn’t know me all that well, but knows a bit about my life. She wrapped up our conversation by saying, “You know, 70% is spiritual!” I had a moment where I thought–did she really just say that to me?

Fortunately, I am secure in who I am, who my Maker is and what His plan is for me. It is good!

It’s About Time Already

I have had blogger housekeeping to do (which has fallen by the wayside lately, much like my own housekeeping at home). I have needed to sit down and write because my sweet girlfriend, Lana at Living it, Loving it awarded me with the One Lovely Blog Award and The Versatile Blogger Award many moons ago. Thank you so much, Lana. There’s nothing like a little love to make your day. It’s humbling, to say the least, to be acknowledged by an incredible blogger. A cherished reminder to me of how blessed I have been by connecting with a group of people struggling with chronic illnesses that are intelligent, creative, inspiring and down right determined. I no longer feel alone and isolated because of what is going on with my body. And I have been so touched by the fact that others have taken the time to read about what is going on in my little corner of the world. Thank you with all my heart to everyone that has offered an encouraging word, a virtual hug or a smile.

I am supposed to display the One Lovely Blog Award. Tada!

The One Lovely Blog Award requirements:

* Display the award.

* Award fifteen others and let them know about it.

I went to my blog roll and counted my brothers and sisters and discovered there were thirteen. I’d like to acknowledge these thirteen, if that’s ok.

And here is the The Versatile Blogger Award. I love green.

The Versatile Blogger Award requirements:

* Recognize the person or people who gave you the award.

* Award fifteen others that you have recently discovered and think are fantastic!

* Share seven things about yourself.

I would also like to award the thirteen brothers and sisters in my blog roll with this award. You are all fantastic!

So without further ado, a few words about the stellar group of people whose blogs have deeply touched my life. Thank you to the heavens. You inspire me, encourage me, educate me, and cause laughter and tears. “As iron sharpens iron, so one man sharpens another.” Proverbs 27:17

  • ∞ itis You were one of the first to reach out to me when I began blogging. I am so grateful. You are my hero–you eat from your own garden and knit your own socks from yarn from your own animals–how awesome is that? You have organized a medical notebook that is nothing short of inspiring. And you keep your blog so incredibly current. Your site is always a welcome and enjoyable place to stop and read.
  • Confessions of an RA Superbitch SuperBitch, what can I say? You really are a blogging rockstar in my book. : ) Simply love the brutal honesty. But you are also as sweet as they get. You are my alter ego. Never stop “bringing it”! Your posts are the ones I read out loud to my husband and relate to so often. Thank you for also being such a wonderful friend. Takes a huge load off when you can share with someone.
  • Dual Sport Life You are the first brother to leave a comment on my blog. Thanks, Terry! You represent the male front beautifully as a husband and also as a father. I’m so glad to have met you.
  • Letters From the Breach Kris, I’ve missed your posts and often wonder how you are doing. Your writing is gifted and often poetic. I still remember the first post of yours that I read. It created such a clear picture in my mind of you as a child in the moment you were describing. Please let us know how you are doing when you can.
  • Living it, Loving it Lana, you knock it out of the ballpark over and over and over. I honestly don’t know how you do it. You are an amazing blogger and advocate. You share the good, the bad, the ugly and everything in between. I love stopping by and delving into your posts. Thank you for being such an incredible source of information, for sharing your heart and your life with others, and making yourself available.
  • Living with Rheumatoid Arthritis An incredible source of medical information. Thank you for the time your take to provide links to current information and for blogging with integrity. I appreciate so much that you have shed some light on an antibiotic protocol as an option and provided a pingback to my AP diary. I have learned so much from you.
  • Pollyanna Penguin’s RA Blog You are one of the first RA bloggers I found. I love reading about your life experiences mingled with RA and all of it’s glory. Your stories and attitude always bring a smile to my face.
  • RA (Rheumatoid Arthritis) Sucks I keep checking on you. I miss your posts. You are also one of the first RA bloggers I stumbled upon. I remember reading post after post of yours one night. Love your writing style and your no excuses attitude. Tell it, sister.
  • Remicade Dream I clearly remember reading post after post of yours one evening as well. I literally laughed out loud and cried. Reading some of your posts felt like reading my own thoughts. I remember thinking, wow, I’m seeing what I’ve been feeling articulated on the screen. Suddenly, my thoughts were no longer just a voice in my head, but emotions that someone else had wrestled with. Thank you for being honest and real.
  • RheumaBlog I see your kind and encouraging words on several of the blogs I read and have found comfort in your posts. I love that you appreciate the simple things and find joy in things often overlooked by others.
  • Rheumatoid Arthritis Guy Definitely another rockstar in my book. (How ironic that the two rockstars on my list are also blogging super heros.) I have looked to your blog for many reasons, many nights and have found comfort and rest. I admire your enduring and optimistic spirit, love your guest posts and the responses you receive from all over the world. Thank you so much for sharing my blog with others. I have to wonder if you’ve ever stopped by. : )
  • Southern Gal with RA Leslie, you have been an incredible catalyst for change for me and a source of hope. Your blog brought about AP awareness for me in a whole new way. And girlfriend, I am seeing significant improvements now! Thank you so much for for taking a chance with AP, sharing your experience, and your knowledge. I thank God for you.
  • The Life and Adventures of Cateepoo Cathy, my all natural sister. : ) I love visiting your blog. It’s like reading a really good book with a big, fuzzy blanket on a chilly day–cozy and comforting. I adore the stories of your children and identify so strongly with your struggles to avoid pharmaceuticals and lead a healthy life. Thank you for letting us into your life and sharing your family with us.

And now, seven things about myself:

1. I am a sinner saved by a grace that is freely given. I asked the Lord into my life and received this grace and the assurance of salvation in heaven when I was 24 years old, and I’ve never been the same since. He gives me joy, He gives me strength, He gives me peace. He is an awesome God that loves and adores me despite my flaws and failures. What else could a girl ask for? But don’t get me wrong, I’m no Christian prude. I still like to have a good time.

2. I was once married to a man that was abusive in more ways than one. (Not everyone knows this about me. See what you guys bring out of me?) Divorce was never in my vocabulary and I was blinded by legalism–so I stayed in a unhealthy marriage for far too long. I am now married to a man that treats me like a princess. He took an incredible leap of faith when he married a girl with three boys. We met through e-harmony and had a long distance relationship for almost three years before getting married. We call our sweet little one an e-baby.

3. I got my degree in fine arts from UT Austin. Love the urban, hippy culture there and all things creative and inspiring. I love to draw and create jewelry. I had aspirations of becoming a college art teacher. God had other plans and I’ve been a stay at home mom since the day my first son was born. Can’t imagine life any other way.

4.  I love to dance. You name it–salsa, swing, two-step, waltz–love it! I also love getting my groove on to any kind of music you can dance to. I’m a wife and mommy now, so that doesn’t EVER happen in a club scene anymore. But I have to give a shout out to my sis for hooking me up the night of my bachelorette party! Good times…

5. I love the store Anthropologie. I’m crazy in love with their clothes and housewares. Love the vintage and unique look to many of their items gathered from around the world. If I could have a shopping spree anywhere–that would be the place.

6. I love documentary movies. I am game for just about any subject matter. Supersize Me is one of my favorites.

7. I was a health nut that loved to exercise on a regular basis before I was diagnosed with a chronic illness. Now I’m a health freak that admittedly can drive my family crazy sometimes. It is soooo hard to watch my husband and children eat things on occasion that I know are downright awful for them. And when I see people at the grocery store that are elderly or have young children with carts full of–pardon me–crap–it really breaks my heart. I just want to stop and tell them how awful the things in their cart are for them. But hey, I still drink coffee and eat chocolate and ice cream. Delicious. So, who am I to talk?

And that’s a little about me. A million blessings to all of you!

Good Riddance

The words below were in my inbox today.  Max Lucado wrote them.  He is one of many people that has provided inspiration in my life.

To Be Saved By Grace

“God gives us a free gift—life forever in Christ Jesus our Lord.” Romans 6:23  “One of the hardest things to do is to be saved by grace. There’s something in us that reacts to God’s free gift. We have some weird compulsion to create laws, systems, and regulations that will make us “worthy” of our gift. Why do we do that? The only reason I can figure is pride. To accept grace means to accept its necessity, and most folks don’t like to do that. To accept grace also means that one realizes his despair, and most people aren’t too keen on doing that either.”

I have been thinking a lot about the same thing in the past few days.  The idea that my pride gets in the way of the cross–which for me represents what God has done for us and what He is going to do.  I lose focus over things like pictures of babies with autoimmune rashes while looking for some semblance of my own rash, because I start to worry about my own children. Does anyone else worry that their children will have to deal with an autoimmune disease? And I read studies on pubmed that use words like mortality rate and RA, and I lose focus. But that’s where I get to see the pride because I realize–who am I to worry about what is in store for my children or when my time here is up? Am I so special that I should get to decide how long I stick around on this earth? You know? God loves me, but His ways and His plans are so much better.  One day at a time is how I have been living lately, and it has been much more enjoyable that way. I enjoy the little moments and the little things a little more lately. Things like singing silly songs and making animal noises with my one year old, a french pressed cup of freshly ground organic coffee (oh yeah), time alone with my husband. Silly to think that I have fretted over the fact that I might not live to be 100 like I always hoped I would. That my days feel a little more numbered right now. Of course, I am hoping for a cure and I’m checking up on the latest things scientists and doctors are doing. But at this stage of the game, living to be a 100 is not looking too good.  I would probably be such a mess anyway that I wouldn’t want to be alive!

As I drove somewhere this morning and was alone for the first time in the car in a while, I had a peace about exactly where I am at with my disease. My hands and my feet hurt terribly some days. But on other days, I get around ok.  I always tell my kids when they express frustration over the fact that I am battling something that it’s ok that I am. It is. It’s ok. And when I stray from feeling that it’s ok, I know at least that I still have a way back-His Word.  I am totally standing on His promise.  And I have to remind myself of what is really going on and what is yet to come sometimes.  It’s pretty exciting if you stop and think about it.  And boy what a relief to think about it.

My rash is spreading and changing colors.  Really need to take some pictures of it. Still doesn’t itch, but it is crazy looking. Discovering that skin rashes are common with JRA and Still’s disease.  Was not too familiar with Still’s disease until recently after digging around for pictures of other peoples’ rashes (which led to pictures of little ones).  Along with lots of digging and researching, I have been doing a lot of blog hopping. Thank you bloggers for having blog rolls.  I read  about Southern Gal with RA and her experience trying an antibiotic protocol.  I thought, hmmm, I’ve heard of this–why have I never really looked into it? I followed up with research about AP, and then with the Roadback Foundation. If I recall correctly, Southern Gal has to travel three hours to see a doctor that will prescribe an antibiotic protocol for her patients. That just stinks. I contacted the Roadback Foundation to obtain doctor references for my state and told them that I was willing to travel (they said to mention whether you were or not).  I got a reply the same day–this was yesterday.  There is one doctor in my city on the list.  The other doctors are hours away.  The e-mail said that I should contact the doctor to find out if they are still prescribing AP.  I quickly did a search on the doctor and discovered that he is 8 miles from my house. Wow.  Hello.  Feeling a God thing happening here. He is right under my nose.  Just down the street. I read reviews about him on various doctor rating sites and they are great.  (Love the internet for info.!) He is in his sixties and has his name on several research studies, and the reviewers said he was unhurried and his protocols worked for them.  Nice.

Today, I called my current rheumatology office to follow up with a call I made to the office manager two days ago.  I decided to call and speak with the office manager instead of writing a letter about switching doctors.  Thought it might prove quicker. I poured my heart out to this woman named Helen (while fighting tears–hate it when that happens) and explained how my doctor had basically been a big jerk and made my life more difficult and was there anything she could do to get me an appointment with the “nice” doctor. She thanked me for sharing my story and said she would talk with both doctors to see what she could do and would get back to me. Didn’t hear from her yesterday and since I am not getting better and it takes a while to get in with a new doctor, I decided to follow up and call her this morning. She said the “nice” doctor said he is sticking by the office policy and I won’t be able to switch doctors.  I asked her what my current doctor said in regard to not signing my handicap placard form. She said that the state is really coming down hard on physicians for disability claims and things like handicap placards. Are you kidding me? I said, “If you knew me, you would know I was once very active and have been healthy most of my life. And asking for a placard was not easy.”  She said, “I don’t doubt that, but the physicians have to be careful these days.” Then I asked her what I needed to do to get my records. I am going in tomorrow between noon and one PM to pick them up. What a pain. But can you believe that I just acquired the name of another rheumatologist that is right down the street? I was looking at rheumatologists online the other day and it was a bit overwhelming to think that I might have to narrow it down to one and start all over.

So, good riddance to my old rheumatologist. Feels good! Can’t wait to get my file and see everything my doctor has written about me. This is going to be great!  I wish my doctor the best, but I hope he at least learns a little something from this in regard to how you treat your patients. But as my husband pointed out–they aren’t hurting for business.

I then called the new rheumatology office. I know this place is older and does not have a fancy infusion center like my other doctor’s office. They don’t have a website either. The other office did. But the staff was much more pleasant and I was able to speak with the doctor’s nurse right away. Awesome. I told her that I was not an established patient and asked her if the doctor still prescribed AP. She asked who referred me and I told her that I was given his name by the Roadback Foundation.  She said, “It’s a foundation? And what is it–AT?” I’m thinking she is not aware of AP. She got back to me today. I told her that I never got a call back on the same day before and thanked her. She said that the doctor told her to tell me to keep my new appointment with him (first available was August 3—which stinks) and to bring everything with me that is part of my current protocol. I’m liking this guy already. My old doctor could have cared less about anything I’m taking because nothing I was taking regularly was a pharmaceutical. Whenever I would tell him about what I was doing or what type of exercise I was engaging in he would kind of smirk and type on his laptop.  I told my husband that I have between now and August 3 to really work on weaning my son. Cue the water works. I know it’s time. I want to be ready, or at least close to being ready to try the drug route when I see this new doctor.

Praying for my sisters and brothers.