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.


8 thoughts on “Good Riddance

  1. wow so crazy! right now I am at a cross roads with my rheumy and I really don’t know what the right thing to do is. I have an appt with a new one in July and i’m going to go to that appt. But in all honesty I don’t know what to expect from a good rheumatologist 😦 isn’t that sad! I just don’t know what makes a good dr. But reading all these blogs I always feel like should I be doing more? Should he be doing more? or Why doesn’t my doctor do that and it’s not a good feeling i just wish I knew where to turn right now. I feel overwhelmed and I really can relate to a lot of what you say. Thank you so much for being so open 🙂

  2. Hi J,

    So great to hear from your other reply that you have a supportive hubby and four legged children. Having the support of my husband means the world to me right now. And so excited to hear that you have been listening to Len and Joe. I always learn something new from them.

    No luck with MTX? Guess you weren’t missing out all those years, huh? I’m so sorry. : ( Depending on what comes of my AP interest and new doc., MTX and Humira is what I am looking at. With the verdict being out on what really causes RA and the med.s only working for some, and in some cases, only for a certain amount of time, I feel like we really need to be advocates of our own health and stay educated the best we can. And that can sometimes seem overwhelming to me to say the least. I am constantly researching and feel like I’ve just scratched the surface. Feel like a detective on a case. Have a friend with a mystery illness that has lasted over seven years. She said that she feels like an attorney trying to plead her case sometimes when she sees her doctors. For me, I want the wisdom of my rheumatologist, but since I know the choice of drugs is up to me to decide and doctors can’t possibly know everything, I want a doctor that doesn’t belittle me and supports the decisions I make.

    Found a great piece on what makes a good rheumatologist by Lene Andersen that you might enjoy.

    I pray your July appointment goes well and you have a peace about which direction to go with your doctor and your battle plan. Stay in touch.

  3. I’m so sorry to hear that the nice doctor wouldn’t bend office policy and take you on as a patient. That really stinks!

    Have you been to see the new doc yet? Or have an appointment? Did you get a copy of your file from the old place?

    • Great to hear from you, WarmSocks. I see the new doc Aug. 3. Can’t wait. Gives me a chance to get all my information for him in order. I did get copies of everything in my file. Love having my records! I couldn’t even wait to get home to read my records and peaked at a few of my doctor’s notes as soon as I got in the car. Devoured the rest of my file that evening. There are errors in his notes and a lot of information is missing. Frustrating. Not going to bother asking him to fix errors, although tempting. Thought about this when I read your great post about online medical records.

  4. wow – girl. So much goin’ on!

    Leslie is teriffic. I’m glad you found her.

    I had no one w/in hours of here with whom was using AP, BUT! My doc agreed to try if I was wholeheartedly ready. But again! She told me if it were her, she would try the last of the biologics before moving onto AP…But (one more time) as Leslie pointed out, she’s not used AP but once, and that was on a sclerdoma patient. It gets so confusing. All we can do is pray, and hope we are being led down the right path. I will add you to my prayer list this week for sure.

    Lots of love and luck!

    • Hi RA SB,

      Thank you for such a sweet reply. It really lifted my spirits to hear from you and WarmSocks. I’m so happy to hear that your doc is at least willing to try AP. So ridiculous that the list of AP docs is so short. I recently finished the book The Road Back based on Dr. Brown’s AP therapy–which is within the book The Arthritis Breakthrough. One word–fascinating! If you haven’t read the book yet, I highly recommend it. Fascinating, girlfriend.

      I’m so glad I found Leslie too. She triggered a new direction for me that has given me more hope than I have felt since being diagnosed. You my friend, have such a tough decision. Try yet another biologic drug, or try a completely different route with AP? Leslie makes such a good point about the fact that scleroderma treatment/recovery is different from RA. Shouldn’t be used as a reference for your situation. Talks about it in the book in more detail. Dr. Brown’s patient accounts are a better reference for anyone considering AP, I believe.

      I’ll be praying peace for you in regard to your decision. Glad your current doctor will work with you and so I’m glad you have options still.

      Big Hug!

  5. Thought I’d check in to see how you’re doing?

    I found your mentioning of your rash interesting as I have a rash too that I think is connected to my RA.

    Although I’ve seen several derm docs they can only tell me it’s folliculitis or acne.

    I just got back to Germany from a two week trip to Chicago. I saw a new rheumatologist who was great. He changed my medication from Enbrel to Humira and I feel infinitely better on the Humira.

    The bad news is I had an MRI of my cervical spine because I was having severe pain in my neck and was found to have mild to moderate cervical stenosis from the RA.

    The good news is on the MRI the radiologist incidentally saw a large thyroid nodule and I was able to get it biopsied and it’s benign.

    Regarding the AP, I read so much on AP. The ACR has added minocycline to their list of DMARDs.

    I also read on the blog site “cooling inflammation” that there is a strong connection between bacteria in cells in your system and RA.

    Unfornately, most rheumatologist practice conventional medicine and are unable to consider other treatment modalities.

    Have you read the book The Arthritis Breakthough? It about the AP for RA.

    I wish you all the best.

  6. Hi Denise,

    So great to hear from you. It’s wonderful to be connected to others on the RA coaster. Yeah! Feeling better on Humira is good. Interesting to hear that you have a rash too. Does your rash ever come and go? Mine is gone now! But I am a mess, girl. A huge mess. All of the sudden–like in last couple days. Worst I have ever been. Awful to hear about your neck. : ( I’m working on a post right now and I have read the book. Devoured it recently and am going back through parts of it a second time. A lot of valuable information. Trying to get down all of my medical history for the next rheumatologist. So excited about switching doctors.

    Hope you had a great trip home and back to Germany. Long flight for someone in pain. Pooh. I lived in Germany for five years. My dad was stationed in Stuttgart and I graduated from high school there. Then onto college in Texas, which is where I am now. I have been to a lot of different places in the world, but have never experienced your hometown city of Chicago. Definitely plan to someday. Want to go through all the museums!

    Thanks for checking on me. It made my day. : ) Praying you continue to feel good!

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