Timeline from first symptom to diagnosis

Our son Connor was diagnosed with JDM in January of 2010 and here is a bit of a timeline to show you how this diagnosis was reached...

Towards the end of November 2009, Connor mentioned some pain in his right foot. We found a Plantar Wart and began treating it. We went on vacation in Germany were he mentioned a pain in his knee's, to feeling in his own words, pain 'inside his legs'. By the time we got home on December 9, he needed to be carried almost everywhere. By the end of December he was unable to feed himself, dress himself, sit up or down, lay down and of course walk. Here is a list of tests he went through between December 10 to December 28, 2009

X-ray of his Hips
MRI of his spine
X-ray of his chest
CAT Scan of his brain
CAT Scan of his chest
MRI of his chest
MRI of his hips
Numerous Blood Work
Spinal Tap
and we finished with a Muscle Biopsy

There were many speculations of what might be causing Connor so much pain and one of them was Gullian Barre Syndrom (GBS) due to his first symptoms showing up within a few days of his H1N1 Flu Shot.

The final Diagnosis came on January 11, 2010
-Juvenile Dermatomyositis (JDM)-

Hope

Hope

Tuesday, May 31, 2011

Healthy Lifestyle and being able to afford it? 'Possibly' :)

I so want to Thank everyone that has responded so wonderfully to my latest Facebook Post about ways to cut down cost but not cutting back on buying quality foods (if possibly Organic).
There were so many responses and ideas that I wanted to make a Blog Post out of this so I can share the information with all of you as well.
So this will be a cut and paste from responses I got but to give a big of a background on why I asked this question to begin is easy. For one I am inspired by many of you who have taken an active role in your home to turn eating habits back to the basics and back to eating healthy. I have been admittedly fallen behind the eight ball on this one for the last year or two. Not truly on purpose but out of necessity for me. It was the easier path to take to neglect the food quality we ate only because I did not make it a priority. Yes, I do tend to blame JDM on this as well as we actually had a very healthy lifestyle prior to JDM. You would think common sense would have made me be more focused on eating healthy, especially with Connor being so sick but ironically that was the one part that fell of the wagon.
The reason I am blaming JDM is easy to explain on my part. I am good at coming up with an excuse - haha. For one we started out with Connor spending almost eight weeks in the Hospital and belief it or not, Hospital Food is not truly healthy at all. At CMH, as much as we love that Hospital, having a Mc D's in the Basement did not help much. The hours for Mc D's were much more convenient then the Cafeteria and when you have a sick child who is being poked and probed and in pain, then add a twin brother who is restless sitting in a Hospital room for almost the whole day, day after day, you find that you can make them smile with a Happy Meal and an Ice Cream Cone. You on the other hand are tired and crave caffeine and sugar. So Mc D's Medium Coffee with three milk and three sugars sound heavenly and of course a Big Mac and some Fries are just perfect for a sluggish body --- yes I am sarcastic again but it sure seemed to work at that time ;)
Now we did get back home after the eight weeks in the Hospital but now we were faced for over a year with a busy schedule of Therapies, Doctor Appointments, Hospital Visits and the added challenge to School the boys while on the go. Add to this taking care of a Home and working around the finances of a disease and Home but being on the road A LOT you find out that eating healthy and cooking at home did not come easy for us at all. I did start focusing on what I bought when going to the store and I figured at least I could try to balance the junk we ate with having Organic Foods available while at home. Connor is suppose to be on a Dairy Rich Diet so we went to Free Range Chicken Eggs, to all Organic 1% Milk, lots of Yogurts and Cheeses. We started only buying Organic Meats at COSTCO and I started to buy lots of Organic Fruits. All of this and taking a good look at our financial budget led me to my facebook post yesterday. While our Grocery Bill has gotten pretty pricey we also still have the eating out and on the go bills as well. Both together are not my idea on what I want us to spend each month for food alone. I am now ready to go back into our previous lifestyle before JDM came along due to the fact that we are looking at a summer with NO therapies, and we are now stretching out the IVIG to every six weeks. This should limit our road trips for medical reasons to almost none ;)

So after all this writing, I am now handing over and paste the great ideas so many of my friends have posted:

Sunflower Market in C-Springs (Wednesday's they combine last weeks and this weeks Add's) ... Thank You Vicki and Amy!


Accept eating healthy as a Lifestyle and limit your eating out! ... Thank You Sonya and Mandy!


Start your own garden or Greenhouse ... Thank You Lynn!


Finding Meals to subsitude Meat, make batches of sauce and freeze, having Breakfast for Dinner one night a week :) Make your own Cakes and Desserts, it is cheaper and you know what goes in it. No food coloring or other chemical subsitues. Give some fats and sugar to your kids as you do not want to debrive them. Remeber a little is better then not allowing any and them craving it and having exess of it later in life. Use left over veggies to make soup. A great comfort Meal on top of being healthy. Also look for coupons for canned food and cereals, etc ... Thank You Betty and Nancy!


If you don't buy Organic wash your fruits and Veggies really well.... Thank You Robyn!


CSA, Community Shared Agriculture. You pay for your share of a farmers crop and get weekly shares. To save and have delicious organic meat you can buy part of a buffalo, cow, pig, etc from a farmer. Make sure you have lot's of freezer space ... Thank You Maddie!


Focus on Organic Meats and Eggs due to the hormones and antibiotics. Buy a Buffalo from a Rancher and have it processed by him. If you are a hunter you can hunt for your own meat (since we don't I might have to make a deal with my friends that do ;) Check out the Hackman House in WP and their Colorado Co-Ops. Good option if you can pick it up each week ... Thank You Anne!


Look into a Buying Club for meat. You sign up but only pay for what you choose to get one week a month (you decide in advance), then a few families share the cost of say, one whole cow etc. Same for veggie co-op, you only get what is in season but you only eat what is growing right now which it is healthy, too :)
http://www.eatwild.com/products/coloradoresources.htm ... Thank You Kim!


http://www.localharvest.org/ ... Thank You Brenda!




To me all of the ideas above have been wonderful and I so appreciate each and every one of you for giving advice. I am excited to try out several things that were suggested so you might see an update in the future :)


I hope what I copied and posted will help others who might be in a similar situation then we are. It does take efford and money to live healthier but as Sonya said this is a Lifestyle that I believe will pay off.

Best of Luck to all of you!

Hugs,

R A C A



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