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!

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12 thoughts on “The Call That Said it All

  1. Rheum,

    Anytime we have to make a decision on the best treatment for RA it is very scarey. I know that some of my doctors thought I was crazy when I didn’t take their advice, especially when some of them were too quick to hand out medications. I hope you find something that you are comfortable with and that you feel better 🙂

    • Thanks, Elaine. It is scary. I am particularly hesitant because I am so sensitive to drugs. I can’t take anything without experiencing some type of side effect. Don’t want to tick off my fragile system with some crazy drugs. But then again, this is a battle. : )

  2. I too was hesitant about taking drugs partially because hubby and i were trying to get pregnant w/ no success 😦 and because how scary the side effects of the drugs are. But finally after 7 yrs yes a whole SEVEN years without drugs i finally had enough and broke and filled my mtx prescription. I didn’t do the natural homeopathic stuff because i was frustrated with it all. I really didn’t know about this disease and the damage it can do and i was definitely sheltering myself because i was afraid to really know. I relied solely on God’s strength to get me thru. It was a difficult decision going on the drugs because i felt like i was giving up. I held on to the prescription for 6mths before actually filling and i suffered thru this past winter because the RA had completely taken over it was a difficult to do anything. I understand how hard it is to make the decision of going on the drugs and have to give up breast feeding. For me to have to tell my hubby we had to stop trying to get pregnant was devastating to say the least. But you have to wait till you have the peace that you are looking for that release of I’m going to be ok that God can only give you. I’m not advocating staying off drugs but i know that God protected my joints because 7 yrs without drugs and i have minimal damage. The pain that goes with RA was a daily struggle but with God i was able to push thru. You and I both know that we believers lead our lives being lead by God stop trying to find your answers in this world and start asking God what should be your next path he will never steer you wrong.

    • J,

      Your comment made me cry when I read it. Just broke my heart. Girl, seven years is a long time to try to have a child while battling a disease. But praise God you have minimal damage after that long. You are tough and determined (and probably stubborn like me). And you are so right, we do need to have a peace that can only come from God to move forward with big decisions. I know that is the case for me. I love what you said about the fact that as believers we stop looking for answers in this world and trust God to lead us. I can’t imagine where I would be without this truth in my heart. I know He has each one of us in the palm of His hand. And when He gives us peace in our decisions, it is the greatest gift.

      I pray that you are doing well on the med.s and have a blessed marriage. I wanted to mention that RA Superbitch (link on the blog roll on the right) has a recent post with several comments that talks about trying to have a child and not being able to due to the disease.

      • awww I didn’t mean to make you cry 😦 and yes I am very stubborn. I don’t mean to be but it helps me get thru the long days when I don’t feel that I can. It is a long time and I just needed to know that I was making the best decision for the both hubby and myself. I didn’t want to be selfish and just say I’m going on drugs and that’s it because our spouses didn’t sign up for this but I thank God that I have a great hubby. He supports me in whatever i need. He’s definitely a God sent.
        As for the drugs the MTX didn’t even touch the RA the rheumy told me that it’s still way to active and wants me to start Humira with the MTX ugh! More drugs. Since reading your blog I’ve been listening to Len and Joe and they are fascinating! I’m definitely going to contact them to start getting on some type of supplements. Thank you for sharing them 🙂

        I can relate to almost all the post on SB blog I love her and I did read the latest one and I’m kinda right there with her. I don’t know what to say anymore to these people that make the “so when are you going to have a baby” comment. It makes me so angry but I’m really trying to just let it go. Hubby and i are in a great place and we are ok with it just being us and our 4 legged children 🙂 we have a happy marriage and that’s really all that matters to me :).

        Thank you for blogging I really enjoy reading it :)…Stay positive 🙂

  3. I was just diagnosed w/RA a couple of weeks ago, after struggling to do daily routine things w/out help.
    I’d made an appt. w/a rheumatologist, only to hear him recommend I take a Rx that would (definitely) cause birth defects: methotrexate. Whe I asked him if we accidentally got pregnant, he replied “Dont.” He said, “..use 2 birth control methods..; if you plan on getting pregnant again, wait 2 (mentral) cycles.” I’d hate to think that the methotrexate would stay in the system longer, and it makes me wonder what type of birth defects were caused by the medicine.
    “There are others that don’t cause birth defects”, he said. “but, they are more expensive. The methotrexate &; proquenil (other combined rx he wrote for me that I also haven’t filled yet) would be about $1000/year vs. the Humira, Enbrel, or Remicade, which would be around $15,000/yr. So, you would have to check w/your insurance to see if you would be covered & just pay a co-pay.”
    Overall, I find the side effects nerve wracking too.. I’m about to check into my insurance to see if naturopathy would be covered under my plan, after the holiday wknd, as the offices I’d called are closed right now.
    I’d been using several, natural supplements w/a little decrease in pain, but still find myself struggling w/aches &; pains. So far, I’ve tried: glucosamine, chondriotan, msm, flaxseed oil, omega 3, &; something called ‘Napolea’ that my mother bought for me (w/a money back guarantee, if my inflammation doesn’t go away)..
    It is interesting to find out that when pregnant, the symptoms/’flare-ups’ go away.. but then, often “50% of women (who’d gone into my dr’s ofc) have the RA after giving birth. But, no one knows why. Could be hormonal.” I know that women produce the hormone called relaxin while pregnant that helps loosen ligaments.. but, does that just make it so the symptoms aren’t felt? Is the RA still in progress during pregnancy (w/relaxin being a form of pain-killer, per se) &; after the relaxin goes away, we just feel the effects of physical strain we’d gone thru both during pregnancy & the labor? I dont’ know, but I have to decide if I’d like to start planning for another child soon, or can’t help but wonder if the RA would be more intense after the 2nd child.. I do need to continue to seek God’s help for making my decisions on this.

    • Julie,

      What a huge decision you have before you. Remicade Dream (link on the blog roll at the right) is in the process of trying to have a second child. Might be helpful to connect with her. RA Superbitch (link also to the right) has a post on her site with several comments related to having a second child while battling RA that might be good to read. It is overwhelming sometimes–the decisions we have to make not only in relation to our health, but in relation to the impact it will have on our entire family. I pray that God gives you peace in whatever you decide.

  4. You sound really positive in this post. I have read much of the RA and pregnancy research you are referring to. After my fourth child (who is ten now), I started to feel sick but not enough to be officially diagnosed. It was not until I had my fifth child (two years ago) that the disease was aggressive enough to receive a diagnosis. Perhaps, I was meant to be diagnosed earlier and the pregnancies held it off but at this point, it does not matter anyway. You, however, correct on the breastfeeding and I breastfeed my three middle children until they reached a year old. I did not breastfeed my first because I did not know how and I was a new mother and not ready to deal with it. I did not breastfeed the youngest because my RA symptoms slapped me two days after giving birth. I am still sad that I was not able to breastfeed him. With that said, the best advice I can offer you is that if the methods you are currently using are working, don’t doubt yourself and do not let anyone make you feel doubtful. However, if the disease is becoming more aggressive and it is affecting your ability to parent, then you need to rethink your options. I am not judging but as a mother, I understand your frustration about doing what is right for your children.

    I do think that disease is a work of God so I disagree with Joe on this one (LOL). God tests us from time to time to see how faithful we are. With disease, he reminds that he is there for us to lean on and to ask for guidance. I am not at all as religious as you are but I believe wholeheartedly in God’s ability to guide us. I always seek God’s guidance especially on my worst pain days and I pray for strength and guidance to get more through this. God’s tests are his way of promoting us. He wants to see us to be successful and attentive to his teachings. Because if our lives were perfect, we couldn’t work to be better or to ask for his guidance. With each test, he prepares us for the next.

    I have not tried any of the alternative therapy methods but I feel that we should do what works for us. Find out what works for you and if it is prescription meds, so be it. If it is alternative therapy, then stick with it. But do what is best for you and your family and trust your judgment above anyone else’s.

    • Hi Lana,

      Great to hear from you. It’s so true that I have to trust my own judgement. I’m relying on God to give me the peace I need to make decisions. Right now, I’m holding steady. One day at a time. I could be a wreck next week. You know, expressing myself online allows me to come across much stronger in my convictions for Christ. I am not this way in my everyday life and don’t like to think of myself as religious per say. More interested in the relationship part of my faith in God and what Scripture says, than the man made rules part that I consider religion.

      I believe God tests us as well. I mentioned in a previous post that, “I believe that He is sanctifying believers for the day that we will live in His presence.” He’s trying to make us a bit holier so we can live in eternity with Him! It’s quite an honor when you stop and think about it. God allows us to go through fires so we can become more like Him, draw closer to Him and share in His glory. I love the Scripture that says, “Dear Friends, do not be surprised at the painful trial that you are suffering, as though something strange were happening to you. But rejoice that you can participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.” (I Peter 4:12-13) However, I truly believe that Satan doesn’t like us rejoicing in our trials. He will attempt to undermine anything good. And that is why I think it is important to be aware of all the forces at work in our lives.

  5. Hi. I was diagnosed with RA in 2007. I had a flare in my left hand at the joint near my wrist above the thumb. I was in excrutiating pain and could not use my hand. I went to my GP that day who in turn referred me to to a rheumatologist. I was diagnosed with severe RA. I began with 5 methotrexate pills (taken all at once , once a week). That didn’t work and I was increased to 7, then to 8. Still no results. The doctor then added Remicade IVs to the recipe – every six weeks. My liver functions began to elevate and by the 4th week after receiving the IV I was in flare ups to the point I could barely walk, had little or no use of my hands, never mind sleeping. I begged God to take me. My Rheumatologist then took me off the Remicade and started me on Rituxan (still taking methotrexate.) Rituxan, combined with the methotrexate works! Thank God. I felt that the Rituxan saved my life. I still take the 8 methotrexate pills every Wednesday, but I only go in every six months for my Rituxan IV.

    I have a friend that has RA and she will not take these meds because she is afraid of the side effects.
    I’ve had no side effects from my current treatment and will do anything to fight this disease as I do not want to become a cripple or dependent on anyone. am even willing to risk mild side effects. If anyone out there has any doubts about Rituxan, please, please reconsider, because it really has helped me considerably. I feel strong again, I feel very little or no pain and I have a new outlook on life. I want to live and I have a life now. I just painted my living room and bedroom and it didn’t bother me in the least.

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