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!


In the Beginning

In a nutshell, I am sharing because God put it on my heart to do it.  My perfectionism has been a curse and I have put it off for quite a long time.  I often think of all the things lost–the struggles overcome, the journey through denial and the quest for answers.  Where do I start?  So many things to share.  Let me start by saying that whatever is going on in my body is more real than the nose on my face.  I am attempting to manage this rheumatic fire with the guidance of not only my rheumatologist, but a Dr. of naturopathy.  It will be two years in June since symptoms first emerged.  The fire continues to spread and I have learned to live with chronic pain.  But I have chosen this path because I want to breastfeed my baby as long as I possibly can and avoid the potential side effects that the drugs hold.  I often wonder if and when the day will come when I decide to attack this destructive fire with med.s.  I trust that I will have a peace about it when it is time.  Either that, or I will crack physically and emotionally and go running to my rheumatologist crying and telling him that I am finally ready.

And let’s face it folks–I am here because I could use some therapy.  Writing it down just feels good sometimes.  It helps you go–aaaahhhh….   I also hope to make some friends along the way.  I truly believe that I stumbled upon certain bloggers for a reason in just His time.  I have enjoyed reading about how they get through each day.  It brings comfort and laughter, and quite honestly–tears.  My heart breaks when I read of how some of you feel.  The words of different bloggers come to my thoughts throughout the day because of the similarities.  I soon hope to share the things I have done in my search for answers and the things I am doing now.