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.

Who are We to Judge?

I went to get my hair done at the salon the other day. Done as in–getting my ridiculously crazy amount of  gray hair colored. It is the one toxic thing that I refuse to give up. And believe me, I’ve given up a lot. If I had a few gray hairs—hmmm, maybe. But I have an enormous amount for my age. I would age fifteen years if I went all natural. Not happening, folks. I have enough going on with my body to make me feel prematurely old.

But this isn’t about feeling old or the toxic effects of hair dye. It’s about something the girl who does my hair said to me in light of the fact that I’m a Christian that didn’t sit well with me. My hairdresser knows that I have been dealing with joint pain and asked how I was doing. Initially, I gave her the same answer I give most people, which is–great. Because deep in my heart, I am, and I just didn’t feel like getting into it. But she persisted with sweetness and light and asked how I was really doing. Sigh… so, I felt compelled to be honest.

I kept it short and simple and told her that I was trying out some med.s and was seeing some improvements and experiencing some setbacks, and was taking it one day at a time. She smiled sweetly and said, “Isn’t it great that we have a God that can part a sea and crumble a mountain and it’s nothing to Him.”

(Oh dear God, I thought–where is she going with this?) I agreed and smiled.

And then she finished by saying, “And isn’t it great that we have a God that can heal your disease and it’s nothing for Him to do that if he wants. And it’s not terminal what you have, right?”

Ah, there it is…He can heal me if He wants to.

And what? It’s not terminal? Why not just say–what are you complaining about–at least you haven’t been told you only have a few months to live.

What she said stung a little. It felt as if she brushed aside my reality. And what I heard was–you should be grateful, at least you don’t have XYZ.

But for me, she really dropped the bomb with the healing comment.

I believe the God of the Bible is a God of miracles, signs and wonders. Do I believe He can heal me if He wants to? Why yes, I do. Have I prayed for healing? Yes, of course. Am I banking on healing? At this point, honestly, no. Does this mean that I am lacking in faith? Does it mean that I am not praying and believing hard enough? For me, the resounding answer is no. Of course not.

But I’m certainly keeping hope alive.

I have been trying to figure out why her comment bothered me so much. I mean, after all, I am glad that He is a God capable of healing and I know her intentions were well-meaning. But I can’t imagine saying the same thing to someone else. What if He doesn’t choose to heal you? What if that isn’t His will for you? Where does it leave someone in the eyes of those that believe in God’s healing power when you aren’t healed? This seems to be where the problem lies for me. Unfortunately, it all too often leaves one under someone else’s judgement. And who are we to judge?  Who are we to assume the role of our Savior, God Almighty sitting on the throne?

Isn’t it enough that many of us have to deal with the judgement that a lack of knowledge and understanding of autoimmune diseases brings into our lives? You know the saying, “But you don’t look sick.” Or the idea that we are not willing ourselves to wellness hard enough. (I’ve tried to kick my own butt to get my body to behave! But currently it is still misbehaving.) But some people act as if you are dealing with an illness or a tragedy that they have the right to inspect your life and your faith.

My faith in His perfect plan for my life is what gets me through each day. It’s what keeps me going when the pain is at it’s worst. He is the One I can come crying and complaining to without fear of judgement and receive peace and comfort in return. And this disease has brought me closer to Him. But as a result of what’s going on with my body, I’ve had close friends evaluate not only my faith, but my life.

What also troubles me is that when someone judges one’s situation in life in relation to their faith, they are ultimately judging the will of God as well. I might be in the situation I’m in physically for a million different reasons according to His plan. But He hasn’t forgotten about me. He knows exactly what is going on with my body every second of the day. He is the only One who knows exactly how I feel and why I am feeling the way I do. And He has a plan for my life that is outside the realm of anything I could dream or imagine. And if someone questions why I haven’t been healed, they are in essence questioning God’s will and purpose for me.

I think we all struggle with judging each other in one form or another. I know I do. It’s our sinful, human nature. We just have to be careful how it can impact our relationships, even when we might be well-meaning.

Here are a few other comments I think only the person suffering should be allowed to say:

1. It is part of God’s plan/purpose for your life.

2. He is using it to make you stronger.

3. God is going to use this for good someday.

4. I know how you feel. My so and so is a Christian and has (fill in the blank).

5. At least it’s not as bad as (fill in the blank). (Err, um, a terminal illness?!)

6. At least you’ll get a new body in heaven one day.

7. You can use your experience to minister to someone else.

Although many of these statements are true, and are often said with good intentions, they belittle what a person is going through. I’ve often struggled with what to say to those who have been diagnosed with a disease, lost a loved one, lost a job, experienced a tragic accident, etc. I’ve often been at a loss and have probably said the wrong things at times. No, scratch that. I’m sure I’ve said the wrong things at the wrong times.

I’ve since concluded though that usually the best thing to say is simply, “I’m so sorry.” And then just listen. People usually like to talk about what they are experiencing if your heart is in the right place and you simply listen.

Rejoice with those who rejoice; mourn with those who mourn. -Romans 12:15 (NIV)



Feeling Powerless, Yet Powerful!

The lovely Lana at Living it, Loving it brought to my attention that today is Bloggers Unite, “Empowering People With Disabilities”. Thanks, Lana! If it weren’t for you, I may have never known about this. Those with disabilities or those that love them are encouraged to raise awareness by sharing their experiences about living with a disability by blogging about it. This is certainly a theme worth writing about because when one is disabled, they feel anything but empowered, they often feel powerless. When my former rheumatologist told me during my first visit with him that I had rheumatoid arthritis, that there was no known cure, no known cause and chances of remission were very slim, I felt the rug yanked out from under me and the breath knocked out of me. I instantly felt powerless. Powerless to control what was going on in my body and what my doctor said was going to happen to my body. Powerless to be the wife and mother I wanted to be. Powerless to simply do and be all that I hoped I could be.

As we all know, disabilities come in all shapes and sizes. There are those that are visible and more than obvious to everyone they encounter. And there are those that are invisible. As one who suffers from an invisible illness, which rears it’s ugly head of disability without any warning, I have dealt with struggles that have taken place within myself, with my doctors and in my relationships with others. It hasn’t been easy. I have moaned and cried, thrown a few pity parties, prayed, pleaded and have seen relationships suffer as a result of my disease.

When you struggle with a disability, you often face criticism and judgement. It can come from perfect strangers, co-workers, friends, loved ones, and medical professionals. I have felt the judgement of friends that might as well just roll their eyes right in front of me when they ask me how I am doing. I don’t like to tell most friends how I am doing anymore because they either make me feel like a fraud, offer suggestions or cures that belittle what I am struggling with or criticize the way I have handled my disease. I have even felt like some that care about me believe that I have brought this on myself. I explored this road and it brings with it a lot of hurt and pain. It’s not to say that our psyches can’t wreak havoc on our systems. But I no longer believe for a second that I have been the sole cause of my disease.

Now that I deal with pain on some level everyday and have to use a handicap placard on particularly difficult days (when I used to be the girl that parked as far as possible for a little extra exercise), I notice everyone that walks with a limp, crutches or a cane, or must maneuver themselves around in a wheelchair. My heart cries out to them. But most people don’t notice my disability. (Which quite honestly, I am thankful for. I could do without the added criticism, judgement and sympathy.) And although I appear healthy and able to the outside world, on most days it hurts when I walk, when I get dressed in the morning, when I cook, when I shower, when I carry my baby, etc. This brings with it a feeling of loneliness and isolation at times. And when those that are disabled must also struggle to work and live and get the support they need from friends, family and government in addition to these feelings, it can feel like an awfully unpleasant world to live in at times. This is why the need for greater awareness is critical.

In the midst of this though, I believe we have the ability to feel powerful. For me, this has come from discovering that I am bigger than my disease. It does not define me, what I love and what I believe. I’ve had to dig deep within my spirit and that has brought power. Power to be brave despite the uncertainty of my future now that I have been diagnosed with a lifelong disease, power to accept that this is my new norm, power to let go of the things I can no longer do. But most importantly for me, dealing with a disability has brought me closer to Christ than I have ever been before. And that’s what I call power!

Blessings to everyone dealing with disabilities and those that love them.

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!