Juvenile Rheumatoid Arthritis journey

Our world has recently been turned upside down, but not so suddenly as it may appear. The Lord had prepared me for what was coming and in many small ways I was prepared and saw it afar off. This long online saga will serve as both a place to share our story as well as record it for ourselves.

I. Diagnosis and Research

At the end of August our baby girl L was diagnosed with juvenile rhuematoid arthritis (JRA). The most recent name for this autoimmune disease is JIA, juvenile  idiomatic arthritis. Idiomatic is just a fancy word for "we don't know what causes it..." It started with a constant limp on her right leg at the end of July. After a physical exam, x-rays, lab tests, and discussing family history L was diagnosed with JRA. Arthritis simply means inflammation of the joints. This form of arthritis is an autoimmune disease, which means it is the result of the body's immune system erroneously attacking the body's own tissue as if it were a foreign body, resulting in constant inflammation, pain and possibly joint deterioration if the inflammation continues unchecked.

We met a pediatric rheumatologist and a ophthalmologist to determine how widespread the inflammation was. The rheumatologist determined that only two joints were swollen, her right knee and left thumb, although her inflammation markers were systemically high.

L's lovable legs

L's thumbs, and yes, she does regularly ask me to paint her nails. My diva. 

Because she is a child (not even 2 years old yet at the time of diagnosis) one of the concerns is how this effects her growth. So much inflammation and blood flow around the joints allows the growth plate at her right knee to grow faster than the growth plate on her left leg, possibly resulting in permanent imbalance. (Five months after the diagnosis, that is exactly what has happened. Her right leg is now about a cm longer.)To avoid this the inflammation must be reduced as soon as possible. The recommended treatment was to put her under general anesthesia and inject steroid shots into her two joints. This was recommended to be done every year for the next 4 years. I never felt peace about this recommendation and asked if we could wait until I got a second opinion.

We waited, I applied many of the healing methods I know and tried to reduce the inflammation without many drug interventions. We eat a lot of anti-inflammatory foods, applied homemade turmeric pastes to her knees (which helped; she frequently asked for them), upped her cod liver oil supplements and probiotics, gave her infant ibuprofen, later replaced it with meloxicam, juiced a lot of fresh vegetable juices that reduce inflammation, did energy work, removed nightshades foods, lots of physical therapy, etc.... We tried a lot. She returned to her chiropractor who offered invaluable insights and still aids in L's general well-being. We prayed and received Priesthood blessings. I asked my sister (who also has RA as an adult), my anesthesiologist friend, my adult neighbor who was diagnosed with JRA, I collected everything I could about this condition. I read "Raising a Child with Arthritis" and "Clean." I attended an online Autoimmunce Summit, a week-long set of interviews with doctors, researchers, healers, and recoverees. I preordered a copy of "The Autoimmune Solution" by Dr. Amy Myers. We even attended a conference of the Arthritis Foundation's local chapter (The Family Rheum) where doctors, researchers and families educated and encouraged. I've been ravenous about collecting information.

In my research I found this:
"It’s really frustrating to me that so many people’s Rheumatoid Arthritis is caused by food allergies and a leaky gut, yet no rheumatoligist that I’ve met nor the Arthritis Foundation will admit this.  I have read in many books of the link between leaky gut syndrome and autoimmune diseases but I will only quote from one,  Fasting and Eating for Health by Joel Fuhrman, M.D.:

'It has been shown in scientific studies that many people with rheumatoid arthritis and other autoimmune diseases have increased intestinal tract permeability. Because of genetic or other insults to the digestive system earlier in life, autoimmune disease sufferers have an abnormality of the digestive tract that allows incompletely digested foodstuffs to pass through the intestinal lining and into the bloodstream.

Proteins in food are the chief culprits that can excite an abnormal immune response. A protein is typically made up of thousands of amino acids linked together. The digestive enzymes cleave the bonds between the amino acids during digestion, allowing the individual amino acids to pass through the wall of the digestive tract. When isolated amino acids enter the bloodstream, they do not excite an abnormal immune response. During the process of digesting a protein however, if a piece of partially broken-down protein, known as a peptide, is able to pass through the the digestive tract wall by mistake, this peptide can and will excite the immune system to react against it.

The peptide, containing perhaps a hundred amino acids, is now recognized not as a nutrient like an individual amino acid, but rather as a foreign substance that needs to be attacked and removed. Thus, the immune system produces an antibody to this antigen, and an antigen-antibody complex is formed.

These complexes are present in the blood in increased quantities in individuals with autoimmune illnesses. [because a leaky gut is usually present, allowing more incompletely digested proteins through into the blood] When these complexes are not effectively cleared from the bloodstream, they can become lodged in various tissues, where they cause inflammation.

In rheumatoid arthritis, for example, these complexes are deposited in the joints, and redness, swelling, stiffness, and pain develop, followed by destruction of the joint as the inflammation continues. The amount of immune complexes deposited in the joints corresponds to the severity of the arthritic symptoms.' -Joel Fuhrman, M.D.'

(source)

Doesn't he explain it so much better than me? Not to mention he clarifies the missing link that mainstream medicine is ignoring: the WHY and HOW. This research and link between leaky gut and autoimmune diseases should help remove this title "idiomatic". It is frustrating to me as well that the rhuematologist and everyone at the Arthritis Foundation meeting neglected to even mention this to all the parents present, searching for ways to help their children. I asked parents if they had tried anything else other than heavy drugs to help their children. I did not find one, but then again I didn't talk to everyone there.

II. How were we prepared for this?

So, why do I claim to have been prepared in advance? She was a colicky baby. She has had digestive disturbances off and on her whole life. Her behavior changes with certain allergen foods. Long before her diagnosis I looked into healing her gut. I attended the Food Revolution Network's online educational summit, I've read many books and articles on healing and nutrition and I learned about the GAPS protocol. It comes from a book called Gut and Psychology Syndrome: Natural Healing for Austism, ADD/ADHD, Dyslexia, Dysplaxia, Depression, Schizophrenia by Dr. Natasha Campbell McBride. It is the protocol that has aided an acquaintance defeat her Lupus (another autoimmune disease) and my sister come really far in her RA. My sister is currently on no medication, which is such a miracle considering her original prognosis of living in a wheelchair at such a young age! I read this book and was prepared to give this healing diet a try in my whole family before L even received her JRA diagnosis. I had Jared's support to try it from April to August of 2014. We were doing really well for about a month, and then my own food addictions got in the way and I fell off the train. I was really disappointed in my lack of discipline and own personal challenges getting in the way of helping my children. But I feel much more prepared to live a healing diet now then ever before because of all I've read and experimented with before she even received this diagnosis.
Not only did these recent events prepare me for this, but when I was 19 I began learning about my own digestive issues and experimenting with healing through diet. Four years ago my mother-in-law's battle with cancer encouraged me to research more and continue experimenting with eliminating dairy, using fermented foods, making bone broth, and attending more educational classes in the community.

III. Recent Improvements

Two months ago I took L to a holistic M.D. who was a pediatrician before she switched over to functional medicine. I wanted a second opinion on how to deal with JRA. Ideally I wanted to know how to heal her leaky gut, her diet deficiencies, allergens and common stressors. This new doctor, Margaret Gennaro, explains on her site "how the body works." Her explanation falls exactly in line with the general conclusions I have come to over my 5 years of personal experience and research: It all comes down to toxins and the body's ability to eliminate them. However, she has a better explanation too:

"I compare your body to a bathtub. The size of the bathtub is your genetics and other hereditary/acquired tendencies called miasms. If your ancestors have had certain health issues or toxic exposures or genetic glitches, your bathtub will be smaller. (There is evidence that genes are affected by the environment in the science known as Epigenetics.)

The 3 faucets coming into the bathtub are:

1. The foods that you eat


2. The environment you are exposed to i.e. toxins (chemicals and heavy metals), infectious agents, electromagnetic frequencies, vaccinations (in those susceptible), environmental factors such as pollen, dust, animals, etc)


3. Emotional traumas, issues and stress, personal and transgenerational

The drain in the bathtub is composed of:

1. Intestines, liver and kidneys


2. Immune system, lymph system, sweat glands, menstrual blood, acid-alkaline balance, hormones, vitamin/mineral/amino acid/antioxidant/nutrient balance, proper sleep, structural integrity


3. Mental, emotional and spiritual healing, a positive attitude and support from loved ones.

If the drain is plugged up and the faucets are going strong (or one gets turned on more than usual), then the “water” in the bathtub will overflow. This causes you to experience symptoms. These symptoms can be anything from a runny nose to cancer. 

When the body doesn’t get rid of the toxins through those usual routes or if the toxins are suppressed, the body will need to do one of two things with those toxins: 

1. Store the toxins. Examples of this are tumors (benign and even malignant), cysts, fibroids, enlargement of the organ or gland such as the prostate or thyroid, endometriosis, fat cells, excessive fluid, and “mental” illnesses.


2. Choose an alternative route out of the body. Examples are skin rashes (eczema, psoriasis, or even excessive sweating), an increase in menstrual flow or frequency, lung problems such as asthma, sinus problems/allergy symptoms, and diarrhea.

Substances that suppress the elimination of toxins (and also create more toxins coming into the bathtub because they need to be detoxified) are steroid drugs, artificial hormones, anti-inflammatory drugs, birth control pills, long-term use of bio-identical hormones, illegal/legal drugs and excessive use of antibiotics.

The goal for ultimate health is therefore to decrease the toxins coming into the body and maximize the drain." (source)

I LOVE THIS APPROACH TO MEDICINE! Love it. When L was seen by this new doctor I learned a WHOLE lot about her body. Among the contributors to the JRA we found bacterial infections, heavy metal toxicity, parasites, emotional trauma, food allergies, and miasms. Since we've created a plan with Dr Gennaro and also done more energy work I have seen noticeable improvements in many areas, but still the joint inflammation remains. The improvements over the last 2 months include increased mobility, less fear and anxiety, better sleep, more laughing and smiling, more consistent bowel movements, and overall improved affect and cooperation.

The rheumatologist put her on a chemotherapy drug (Yikes!) and said it could take up to 3 months to bring the swelling down. The was a big pill for me to swallow, figuratively speaking. But I know synthetic drugs have a time and place in recovery. Although many symptoms were clearing up (like her whiny moods, fear and miasms were cleared, her sleeping improved, morning stiffness decreased, her walking improved to a near run, her bowels hurts less, and she even tells me "mommy, my knees is getting better") some blood work showed her inflammation had actually increased. Because of this the Rheumatologist recommended adding a heavy steriod to the already heavy chemo drug. I did not feel at peace about this immediately, but eventually did feel that peace. For whatever reason, this is a temporary aid that I believe her body needs right now. Thank goodness it was only for 3 weeks! I am very encouraged with the improvements, at peace with the direction we are going, and know everything is going to work out, no matter what that might look like in the end.

IV. Where do we go from here?

From here we continue many of the same methods that have been helping, and have added Total Body Modification (TBM) with our chiropractor. I made a complete list in L's journal of all the methods we have/are trying. It is long and eclectic. I approached each method purposefully, systematically and prayerfully.

During this intense detoxification, the body is flushing out a lot of toxins, causing it to get worse before it gets better. That is both Dr. Gennaro's explanation and mine for the increased inflammation during the detox.

Although there are ups and downs during this time of healing and learning, I have great peace that everything that is supposed to happen will happen. I trust L's intuition to her own body. As long as she tells me "me getting better" I will trust that. After all this little body is hers. It was given to her for eternity and with it came challenges that I know she chose and needs in this mortal life. She is brave and strong and very selfless. This trial is helping and healing the whole family and we have her to thank for making the sacrifice for our learning and benefit. She is an angel in my life and I thank God for both sending her to us and for allowing me to learn by her side. 

childcare and answered prayers

I know Heavenly Father hears my prayers. I never doubted it. Recently, He reminded me just how much he's willing to answer them too. And that the things that matter to me, matter to him. He can make things happen quickly if necessary. I'm grateful for these reminders so I can recognize them and maybe even uplift others by sharing them.

Months ago, Jared and I began praying about our finances. We are doing fine, but would like to get a second car. We function without one, but over the last year it has become increasingly difficult. Jared is now done with his schooling so we have loans that need to be paid off. There are many reasons we pray about our finances; appreciation that we have financing for life in this world, and desire for more independence so that we may better give to others too. 

During that time of prayer, we had many financial opportunities present themselves. I was a little dumbfounded. First, a stranger from Freecycle contacted us after several months to say he had an opportunity for us to work from home. Within 2 weeks, 2 other people in our lives had invited us to join in on opportunities to work from home. We seriously looked into them and prayed about them. Although none of these felt like the right match for our family, I was amazed at the quick response. I'm grateful to each of these people that acted on promptings to invite us to do something. Within another week, someone else invited me to sell for Mary Kay. Again, it wasn't the right match for me, but I could see that the Lord is willing to answer my plea for opportunities, but places the choice in my lap. I had options. Lots of them. And they kept coming!

Next, a couple of married friends asked if I would be interested in watching their child in my home. And pretty quickly; they needed someone soon. This opportunity did settle well with me and we made arrangements to watch the little man three days a week. Awesome. 

The very first day I watched all three, however, I could see that it was not going to work for my kids. It was a hard combination of personalities, especially for my baby L. Each day it got harder for her, and consequently harder for me. So, our trial period ended after three weeks, I believe. 

However, the Lord provided another opportunity for me to work from home and make extra money. Making my children happy and secure at home is really important to me, and it appears that it was really important to Him too. On the second day that I watched our first little friend, my husband was approached by a coworker. She was in search of an in-home childcare provider for her premature baby. This match has been PERFECT for our family. What an answer to prayers this little man has been! We love him and the opportunities he has brought to our family. He starting coming over a month ago, and all is still well. 

Our little buddy

 Our new little friend E has helped us all. He has helped Jared by being a source of income and stress relief to the whole family. He has blessed me by restoring a bit of my confidence in my abilities. When L was a newborn, I was traumatized. That's the main reason I'm not pregnant with #3 yet. This little man has helped me feel like I could take care of a newborn again, it doesn't have to be traumatizing, and I could even do it with three kids! He is here three days a week, and so we get a good balance of time with and without him. My children are learning/relearning how to act around a baby and how to help me. L LOVES to hold him, feed him, and she tells me everything he does. "Baby E cry. Baby E eat. Baby E tired. Baby E toot." It cracks me up! 

S wanted to play dress ups with the only other male in the house :)

We love E. He blends well with our schedules, our needs, and our personalities. His parents are wonderful to work for - reliable, kind, friendly, and understanding. I love talking to his mom about motherhood. Their whole family has been a blessing. And I know Who to thank for sending them our way. :)

middle-of-the-night miracle

The other morning I woke up and opened all my curtains to let the sun shine in, like I always do. I opened the curtains at the sliding glass doors to find this! No more table?!?! Did some bandits come and steal my deck table in the middle of the night?!? Seriously, who does that? How does a table just disappear?!?

 Then I looked over the edge of the deck to see this! WHAAAAT?! 

There must have been some fierce wind in the night, because it picked up my umbrella which dragged the whole table with it and dropped them 20 feet below, without breaking the glass table top! I was flabbergasted. 

Miracles really do happen. They happen every day, maybe even in your own backyard. 

Easter celebrations

Easter is my favorite holiday. I love it most. More than Christmas, Halloween, New Year's or Independence day. I love that I get to celebrate the death and resurrection of my Savior with the rest of the Christian world. 

However, I know not all people who are Christians celebrate Easter like this. Recently Jared and I spend an entire evening discussing with our neighbors who are Jehovah's witnesses. I know they don't call their celebration "Easter" and neither do some of our other nondenominational Christian neighbors. Since the holiday has no origin in the Bible and has "pagan origins" instead, they celebrate Christ's resurrection differently. 

Personally, I'm more of a purist in this way also. I love Easter, not for the celebration of Spring solstice but for the symbolism of rebirth that is offered through Christ's atonement. The egg hunts are fun, but I'd rather find fruit in my eggs than candy. Actually, we filled our eggs with prunes and small toys this year. Jared and I had a good laugh at ourselves for being the weirdos that filled their eggs with individually wrapped prunes! Who thought of that anyway!? "I'm going to make a fortune selling individually wrapped prunes!" What? I thought it was hilarious. I had to support the person who made that possible. 

Anyway, back to the point. I love Easter and really appreciate when time is set aside to celebrate resurrection, rebirth, and renewal. I may start a family tradition of celebrating our rebirth through Christ's resurrection on the day of His birth. Joint (re)birthday celebrations!

This year we enjoyed lots of different festivities. First we went to a community egg hunt and brunch with lots of church friends. That's where we contributed plastic toys and individually wrapped prunes. ;) Next we enjoyed a family egg hunt and lunch with family and friends. Thank you to the Watson's for hosting and always sharing their fun traditions with us. 

We also celebrated using a week-long activity from the Friend magazine, remember events from the life of Christ leading to his resurrection on Easter day. Lastly, on Easter day my little guy and I delivered a single carnation flower to about a dozen friends, teachers, and neighbors to wish them Happy Easter. S picked which flower they received and then told them the good news: "Jesus was resurrected and lives again!" That was my favorite part of all our Easter rejoicings. 

Check out S's shinner. He had a bad slip and fall at home where he hit his face on the corner of our fireplace tile. Yikes. It bled a bit but mostly bruised all around his eye. He was brave and was confused was it was called a "black eye" when it was never really the color black. 

Family egg hunt

our Sunday morning gifts to the kids

They received face stickers for the eggs

S's on the left. L's on the right. So appropriate for their personalities. 

 Easter dinner was lamb chops, deviled eggs and a green salad. We tried explaining to the kids why we picked lamb. (Well, really Jared picked it but I rather like making a tradition out of eating our Pascal Lamb each year). It wasn't easy to explain that Jesus is the Lamb of God that was sacrificed for our sins. But He is also the Good Shepard whom we follow like obedient, trusting sheep...... And then we eat the lamb. Maybe one day it will make sense to them. 

This is her sign for water but she also says "wawa." Her Jersey daddy should be proud. :) 

I'll never be able to say Thank you Lord enough for His making the sacrifice for me and for the whole world. A sacrifice that not only do I not want to suffer through, but that is not even possible for me to offer. He gave to us what we could never have given ourselves. He deserves at least this one week a year to honor His sacrifice and His resurrection. 

Happy belated Easter everyone!

What family traditions do you observe for Easter? I'm always open to new ideas to help us celebrate!

Three Wise Women

This little treasure hangs in the bathroom at my midwives' office. (No, I'm not expecting. Let's just get that doubt out of the way...) I took a picture because I love it and I hate it. How's that for ambivalent?
On the one hand I appreciate that it's clever, cutesy, humorous, and perfect for this season. It highlights women's gifts. Many women in my life have been one of these wise women - bringing service, order, help, and peace. And how prefect that it's in the office of my wonderful midwives who arrived on time and assisted in bringing my beautiful babies into the world.

However, I hear such arrogance in these words. If women had been there to do what men ended up doing, it would have been better all around. There is already a rivalry in so many hearts between men and women, why must we use the beautiful birth story of the Prince of Peace to subtly cultivate strife? I for one am at fault for comparing the way men and women do things; I don't need anyone else to stir the pot. Yes, there are many things women do well, arguably even better than men. But men do many tasks better than I could also!

Men and women are different and approach problems differently. I'm learning from my Jared (and hopefully he's learning from me) that we can both solve a problem, even if we go about it differently. And there's nothing wrong with that. That's the beauty of a united marriage. When a man's gifts unite with a woman's gifts, we are ONE, WHOLE, and together possess all the good gifts of Christ.

Coming back to Christ's birth, three "wise" men were sent to welcome the child and they brought gifts. According to this short explanation, the gifts were both practical to the family and deeply symbolic to the child's role as Savior. Who's to say the chain of events with these three men did not happen exactly as it was meant to occur? I love the details, symbols, and humble circumstances surrounding my Lord's birth. Why, with this derisive plaque, cast a shadow on it, suggest it could have been better if men were not the ones trusted to care for things?

Chances are I'm being too analytic; a kill-joy. I often am. I thank my dad for that. He used to point out the false doctrine and misleading teachings in Disney movies when we were kids. A bit much? Maybe, but I'm grateful to be able to look deeper and think for myself what is being taught - overt or subtle.

I digress. Very tangential of me. My apology.

I thank God for the birth of His son, the records of the people who knew the details first-hand, and for the believing magi, shepherds, heaven and nature who knew the significance of this tiny baby. I would rather arrive to worship Him two years late than never at all. I would rather be grateful for the three wise men then discredit their contribution. And I would rather celebrate the differences between men and women then show that my way would have been better. Because there is no better way than God's way. And this is how He brought His Son into the world. Can't argue with that, if you ask me.

Cox Farms

For 8 weeks I took an awesome fun part-time job at a farm: Cox Farms. During the day they run a family-friendly Fall Festival full of slides, swings, rides, food, farm animals, all-you-can-eat cider and apples, and free pumpkins. It took us two trips there to see the whole farm and even then we didn't do everything,we just saw everything. I've been working at night, at the Fields of Fear as a ZOMBIE, or as I was called by the end of the season, a mombie. Mostly teenagers work there, but the few moms became know as mombies. LADIES, let me tell you. This job is perfect for stay-at-home-mamas who need an evening break. It's only for a few weeks on Friday and Saturday nights. It would be even better if there were more of us there. Working the haunted hayride has been an absolutely beautiful blend of my love for farms, acting, people and the autumn outdoors! Oh, and some extra cash! One of the best perks? 15 free passes to the daytime festival to take my family back again and again and again. It has been awesome! Think about joining next fall, friends, because it has been a blast. Here are the pictures of our many trips there with family.

my guy is the one listening intently to the musician

I asked him to do this, but I laughed so hard at the result!

peak-a-boo!

He was such a champ on this huge rope swing - he actually held on that long before letting go and loving it. And then I was right behind him! Wahoo!

mining for treasures

When this uncle is around L you'd think she's never received snuggles before, but she LOVES this man and snuggles up to him almost immediately. So precious.

Seriously, I have the BEST family under the sun!

Even little L enjoyed the hayride decorations and dramatics!

This girl makes the best faces!

This adventurous tiny lady loved even the fastest and highest slides!