So, here we are. Six months later.
As I look back and reflect over the last six months, I can finally be honest - in the beginning, I felt so alone through all of this. Besides having an excellent resource - and now friend - who my mother recommended to me, we were on our own. I had never even heard of JRA before. The next thing you know I am on the phone with the doctor who is telling me about Mia's white blood cell count and sedimentation rate being too high and that her immune system was attacking itself, causing inflammation in her joints. When he said, "She has JRA" I could feel my head spinning. At the time, I had a three-month-old baby at home who needed me every moment of every day and now my little girl would be needing me now more than ever. It was overwhelming.
The last six months have been difficult and challenging. And I've learned a lot along the way. It was especially hard in the beginning. A friend of mine put it this way, "There is a period of grief in the beginning; a season of sadness in knowing that your child is in pain and and has been diagnosed with something horrible. But, after that period of grief passes, and it will pass, you become strong again. And then you begin to fight."
This has stuck with me.
While I know there are many more horrible diseases out there (which I remind myself of every day and count my blessings), it is not fun, nor is it fair, for your child to suffer in any way. A day hasn't gone by where I didn't wish it was me instead of her. I now understand what it means to have a "mother's love."
So, now we are in a new season. More prayer. More research. More education about JRA and how we can get to the root of this auto-immune disease. If you treat the root then the weeds (allergies and sensitivities) disappear. It is our prayer that God will reveal those "hidden things" to us so we can help our daughter overcome JRA and lead a normal and healthy life.
During these last several months of research, there are many things I now wonder about ...and regret. For example, I wish I had educated myself more about breastfeeding. Perhaps I could have prevented her from getting JRA? Apparently, children who are breastfed have a lesser chance of getting JRA. Had I known that beforehand, I would have done it longer. For both my daughter and my son. But, I try not to beat myself up too much about it. :)
Mia is still on a "special diet." Though, as she is getting older now, it is getting harder to explain to her why she can't have what the other kids are eating. And I am sure it will get even more challenging as her brother starts to discover new and different foods. But, I am convinced this diet is what has helped her the most (despite what medical professionals say) and we are sticking with it for now.
Recently, I stumbled upon a couple of articles/blogs that only confirmed what I already knew in regards to the connection between JRA (and RA) and diet. It is encouraging to know there are others out who have tried what we are doing and it has improved their quality of life, as well. Here are some of my recent findings:
- JRAlife.com
- RA Heart Tip: Try Gluten-Free Vegan Diet
- For Rheumatoid Arthritis, Choose a Gluten-Free Vegan Diet
I am also blessed to know this blog has helped others. I greatly appreciate the emails I have received from people who are also going through their own challenging situations. Please know I pray the same prayer for you that I pray for my daughter...
"They have no struggles; their bodies are healthy and strong." (Psalm 73:4, NIV)
3 comments! Leave yours here!:
Gosh, it doesn't seem like (to me) that it's been 6 months already! I think about Mia alot when feeding Noah and Kendall and even when I'm grocery shopping!
You can't beat yourself up because YOU didn't do this to her...the devil did! Beat him, instead :) We're thinking of you and are constantly praying.
I have just stumbled across your page and it is such a familiar story! My daughter was diagnosed with JRA at 20 months after a few months of symptoms that no one could diagnose and just turned 2 in April. Her nearly five-month flare has finally subsided and we are on the road to "normalcy" and what that means for our family.
I felt that I had to comment because of what you said about breastfeeding. While breastfeeding is wonderful for however long you can do it, it is certainly not a vaccine against anything. I breastfed my daughter for 17 months. She was perfectly healthy until she got a stomach virus and started showing signs of JRA 3 days later. No one can predict something like this happening. All we can do is educate ourselves, advocate for our children and make life as normal as possible.
I wish you the best of luck with Mia!!
Hi: My daughter is 5 years old now and she was diagnosed with JRA before she turned 4 and it took almost 6 months for doctors to figure out what was wrong with her. About breastfeeding- i have breastfeed my daughter almost 1 year and i agree that it's not a vaccine against JRA...but i totaly agree with you about diet. My daughter is also on Gluteen-free diet and i totally belive she got a lot of benefit from it along with her medications. One thing i noticed (even our doc does not belive about diet) that she is feels a much better and less pain when she is on GF diet.
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