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!

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No More Yummy Easter Bunny

A few things. First off, I freaked out last night when I discovered a YouTube video containing a commercial at the bottom of my latest post. AAAKK!!! I have since learned that WordPress has chosen to place ads on your blog unless you give them $30 a year. I am now faced with the decision of whether I want ads that advertise Lord only knows what representing me on my blog, or cough up $30. I had no intention of ever advertising on this blog. I also had no intention of ever paying money to maintain this blog. Decisions. Until then, please know that I am not happy about the ads recently thrown up on my blog. 😦

Secondly, when did Easter in America become about poisoning our children and glorifying a bunny? When my children were gifted candy recently by someone other than me, I cringed because of what they were going to consume in the name of Easter and our risen King.

Say hello to the infamous peep. I ate them as a kid and they were delicious. Now I know what is in them and the joy is gone.

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They look sweet and innocent enough until you flip the package over. One might even think, “Gluten free–they must be OK.” And how could anything made in a city named Bethlehem be bad?

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But I think the ingredients speak for themselves, don’t they? Please tell me they do. Please tell me that you understand the dangers of corn syrup and synthetic dyes and chemical preservatives? Please.

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I realized something else about the Easter candy as I was photographing it. I noticed that there was no mention of Easter. The box just said, “Happy”. That’s it. What happened to Happy Easter? Merry Christmas has gone to the wayside for Happy Holidays. Have we lost Easter too?

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I dare you to read the ingredients. But please know first that he was “Proudly made in the U.S.A. since 1948”.

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Maybe it should read, “Recklessly causing unexplained, incurable disease and allergy triggers since 1948”. Just saying.

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Do I need to get into the horrors of hydrogenated vegetable oil? Do I? I am not even going to get into the highlighted words right now. But I wanted to point out something on the label that I have never seen before: “U.S. Certified Colors”. Guess how many colors in this bunny? Six. Gag. And it says U.S. Certified because some are banned in other countries (that acknowledge the dangers). Banned, people!

This is Red #40:

disodium 6-hydroxy-5-((2-methoxy-5-methyl-4-sulfophenyl)azo)-2-naphthalenesulfonate (source)

Still yummy? You might also know it as petroleum. Yuck. Ignorance was sweet bliss. But knowledge is power, right?

Red 3, Red 40, Yellow 5, and Yellow 6, have been proven to be tainted with cancer-causing contaminants and cause a host of physical and behavioral problems. (source)

Personally, after spending over $400 dollars on a blood test that my insurance wouldn’t pay for, I’ve learned that out of the handful of things my immune system does not like–dyes make the list–red and yellow specifically. You think I don’t want to keep it out of my children like a crazy lady now? It kills me that they have access to it at school. But it doesn’t matter. Because it is everywhere in our society and we are giving it as gifts at all of the holidays. It’s not easy to decide whether or not to allow my children to have it in limited quantities or not at all. And it’s a losing battle in this day and age.

My hope is that one day the bells will go off and the plug will be pulled and the people in charge will shake things up for the sake of our health. In the meantime, I pray that mommies and daddies and young and old will become aware and more vigilant about keeping dangerous toxins out of their diets.

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.

The Call That Said it All

An impromptu birthday celebration before school. Can't believe baby is one!

I’ve been sitting on the post below for about a week.  It’s taken me a while to sift through things in my mind lately regarding my care.  I’ve also needed to process something that happened that was “other worldly” and powerful. The kind of powerful that gives me the chills when I think about it.

Spring has sprung! Snapdragons from the farmers' market.

I had a follow-up appointment with my Dr. of Naturopathy, Joe, on Wednesday. I discovered him and his partner Len and their broadcast last year on satellite radio.   Joe has been a Godsend for me because he has been an incredible source of support. What I love about Joe’s approach is the combination of conventional and alternative medicine. In addition to being a Dr. of Naturopathy, he is a pharmacist and a clinical nutritionist. But most importantly, he is a God fearing man. He prays for me and is an incredible warrior for Christ. Unfortunately, he is halfway across the country from me. So, meeting in person is out. But he and his partner do phone consultations. So, our Dr. / patient phone relationship began in October of 2009. Without question, my consult with Joe on Wednesday was the call that said it all.

I last spoke with Joe in February. I’ve been following his protocol diligently since then and have known that if things didn’t start looking up, I was going to have to look at starting pharmaceuticals.  I knew this call represented a crossroads for me in terms of how I handle this battle.  In fact, I pretty much knew what Joe was going to tell me based on what has been going on in my body. And I was right. Basically, it’s time to bring out the big, nasty guns. (I can just hear my rheumatologist now–it’s about time you crazy woman!) Look, I’ve been doing research into a million things since my body started going haywire and I have made careful decisions in regard to my care and the health of my baby. I know about the current research behind the early and aggressive treatment of RA. I also know that a large part of the damage RA causes occurs in the first two years. Guess what?  Two year anniversary coming up in June. So, I’m looking at permanent damage to some fingers and toes as souvenirs so far. I know some of you may think I am completely off my rocker. But you have to understand that the choice to breastfeed my baby is extremely important to me–as is my decision to hold off on the pharmaceuticals for as long as possible. People have told me that I have to think of my own health first because I have to be able to take care of my baby.  I know this. And I knew that this was going to be a risky battle if I chose to hold off on med.s. But pharmaceuticals don’t come without a price tag either. And the benefits that a child receives from breastfeeding aren’t temporary. They last him a lifetime!  And on top of that, there are benefits for the mother too.

Breastfeeding protects your baby from gastrointestinal trouble, respiratory problems, and ear infections
Breastfeeding can protect your baby from developing allergies.
Breastfeeding may boost your child’s intelligence
Breastfeeding may protect against obesity later in life
Breastfeeding may protect your baby from childhood leukemia
Breastfeeding may protect your baby from developing type 1 diabetes
Breastfeeding may lower your baby’s risk of SIDS
Breastfeeding helps you lose weight
Breastfeeding can lower your stress levels and reduce postpartum bleeding
Breastfeeding may reduce your risk of some types of cancer
Breastfeeding may protect against osteoporosis later in life

I recently learned of a study that links breastfeeding and RA.  Researchers at Harvard’s Brigham and Women’s Hospital published a study in 2004 in Arthritis and Rheumatism that discovered breastfeeding lowers a woman’s risk for develping rheumatoid arthritis. For women who breastfed for two years or more, the likelihood of coming down with RA was cut in half. Breastfeeding for one to two years, reduced the risk for RA by 20 percent and breastfeeding for less than one year did not impact the risk for developing RA. The time for breastfeeding was for all children in a family. Trouble for me is that I am currently breastfeeding baby number four and I nursed each of my children for more than a year a a half.  That puts me at five and a half years total so far.  Guess I didn’t fall into the group who’s chances were reduced by 50%.  Go figure.  But what if breastfeeding is helping me with my disease in some way right now.  What if it is helping to keep the fire a little cooler.  I’m certainly not counting on this.  I just wonder.  I was however, one of the fortunate ones that experienced remission during my second trimester.  My pain promptly returned somewhere around week two or three after delivery though.

Another reason why I have chosen to delay pharmaceuticals is the unclear nature of my disease.  I am seronegative and my CRP level is 0.3–in addition to everything else in my blood work showing up normal. My rheumatologist has said that the disease does not appear as aggressive as some based on my numbers.  But due to the fact that I now have permanent damage/deformity to my fingers and toes, swelling and inflammation, and live in pain, he has told me it’s “time to stop messing around”.  But then there is the current study that states, “This data reveals that people with rheumatoid arthritis (RA) who test positive to certain auto-antibodies (these are markers that can indicate the presence of active disease) are more than twice as likely to achieve remission when taking MabThera (rituximab) plus methotrexate (MTX) than those who test negative.  Also, people who are seropositive are three times more likely to get a significant improvement in symptoms with rituximab than people who are seronegative. Approximately 80% of patients with RA are seropositive for one of these auto-antibodies, known as ‘rheumatoid factor’. Until now, no research into the treatment of RA has been able to identify biomarkers to pinpoint which patients would respond better to any specific treatment.”  Because I am seronegative, I am not encouraged about trying pharmaceuticals based on the conclusion of this study.  It’s not to say that the drugs might not help, but the study puts me in a smaller category of people who experience success.

You should know I have a thing for furry creatures big and small.

My husband and I don’t watch much t.v. We don’t have cable and we get the local channels in HDTV for free with an antenna. And when we do watch t.v., it is usually one of the three public television channels we get.  Geez–we sound like old people.  But it’s because we are usually on our internet devices at night when the kids are all in bed.  And really, because there is so much garbage on t.v.  Don’t get me wrong–there is also a lot of awesome stuff of t.v. and shows that are really enjoyable.  And I know about TiVo. But I am usually on my MacBook Pro and my honey is on his iPod Touch.  So imagine my disgust when I watched a couple of shows on the big networks last night and discovered how many pharmaceutical commercials there are on t.v.  WOW…. I mean, wow…  It’s jaw dropping for me.  And to hear the list of side effects read — wow….   I heard some of the very side effects mentioned that my naturopath has been warning people of for years with these drugs.  Often the side effects are not associated with the drug when reported to Dr.s.  They are perceived as a separate disease, when in fact, the symptoms are a result of the toxic effects of the medication on the body.  I recently heard a study discussed on Joe’s radio call in show about a heart drug that has now been linked to drug induced autoimmune disorders.  HELLO!  This is just another piece of the many pieces of information swirling around in my head impacting the decisions for my care.

Mama recently brought two babies around. This is the only shot I was able to capture of her with one of them.

Joe said  on Wednesday that he has never encountered anyone like me. He has seen significant improvements in other patients battling RA that have done some of the same things I have done.  He said it is as if my disease is virulent.  I might also mention that I have strange red patches on my face and now recently on my chest.  My dermatologist has done a biopsy of the skin on my face and now this past week, of my breast.  Joy.  She has been stumped  about my patches since day one.  She calls me an enigma. I bet I can predict what the latest biopsy will show–nothing conclusive!–just like the first one.

Now here’s where the “other worldly” experience comes into play. After Joe and I discussed what my next course of action should probably be, which also includes having to wean my little guy, the subject turned. Joe began to talk about spiritual warfare and the fact that he didn’t believe God gave me this disease, but that He was walking with me.  Joe proceeded to basically call the devil out for his role in disease in our world. And then, the phone line made an audible electronic sound and went dead. I knew the second it happened that it was not a coincidence that it occurred when we were talking about our battle against evil. I was on a landline, and so was Joe. Joe called me back and he proceeded to talk about the spiritual battle we are in. Then just as he began to say the word “devil”, the phone went dead again. Joe called me back a second time and I couldn’t hear him.  The line had gone dead as soon as I had picked up the line.  Joe called me back a third time.  I said, “You got cut off in the middle of word “devil”!  He said it was obvious what we were dealing with based on the fact that we weren’t able to carrying on a conversation about it.  Can you say creepy?  Folks, I get a sick feeling in my stomach and a creepy crawly feeling on my skin every time I think about it.  This is the third time I have been disconnected while talking to someone about the devil.  I feel uncomfortable, yet very strongly about sharing what happened.  It was very real.  This battle is serious!

This guy gives me the creeps, but he puts a face to evil. He is one of my boy's Star Wars figures that was modified with a few Sharpie markers.

At the end of my consultation, Joe prayed a prayer for me and my family that moved a mountain somewhere.  I am not kidding. This man can pray for God’s people! And he also said he would look through my file again just to make sure there wasn’t something he was missing. A few days later I received a package with a bottle of DHEA inside. I was surprised and as curious as could be. Maybe Joe was onto something. I am now taking a very small dose (12.5 mg sublingually in the morning and will eventually increase to 25 mg) and will see what happens. What am I hoping for?  What do I expect?  At this point, nothing.  Don’t want to get my hopes up.  But here’s what I would love to see– a little pain relief happen. I do not expect this to alter the course of my disease. But I am hoping that it might help with the pain the destruction has caused. Needless to say, I’ve been researching DHEA and reading all I can. The Mayo Clinic describes DHEA in this way–“DHEA (dehydroepiandrosterone) is an endogenous hormone (made in the human body), and secreted by the adrenal gland. DHEA serves as precursor to male and female sex hormones (androgens and estrogens). DHEA levels in the body begin to decrease after age 30, and are reported to be low in some people with anorexia, end-stage kidney disease, type 2 diabetes (non-insulin dependent diabetes), AIDS, adrenal insufficiency, and in the critically ill. DHEA levels may also be depleted by a number of drugs, including insulin, corticosteroids, opiates, and danazol.

There is sufficient evidence supporting the use of DHEA in the treatment of adrenal insufficiency, depression, induction of labor, and systemic lupus erythematosus.

No studies on the long-term effects of DHEA have been conducted. DHEA can cause higher than normal levels of androgens and estrogens in the body, and theoretically may increase the risk of prostate, breast, ovarian, and other hormone-sensitive cancers. Therefore, it is not recommended for regular use without supervision by a licensed health professional.”

Scientists also believe there are possible hormone factors involved in RA because significantly more women than men are affected and because pregnancy sometimes improves the disease and symptoms may flare when the pregnancy ends. In addition, some women develop RA around the time of menopause. Reading about it’s effect in our bodies has been fascinating. I am willing to be a guinea pig to see what happens.  I actually noticed a difference within a day of beginning the DHEA in how I felt.  I detected an increase in my energy level.

After months of pleading, all three of the boys' desks look clean. Hallelujah!

But here's where it ended up! They did finally get it off the floor. The contents of one desk is still stuffed in a bag awaiting sorting.

At this point, it’s still one day at a time for me.  I know all signs point to pharmaceuticals, but I just don’t have a sense of peace about giving my rheumatologist the green light to write me a prescription just yet. But I feel like I am very close to becoming his guinea pig.

Upon closer inspection, I discovered the piles my son made when he was sorting the contents of his desk.

My son finds beauty in the little things. His pockets are always stuffed with found objects.

In the meantime —

Be self-controlled and alert. Your enemy the devil prowls around like a roaring lion looking for someone to devour. – 1 Peter 5:8

Put on the full armor of God so that you can take your stand against the devil’s schemes. – Ephesians 6:11

Would you believe I found this fortune amongst the pile?

Remembering my sisters and brothers in prayer.  May your day be blessed!