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

Monday, February 25, 2013

Klaudia ...

A truly heartbreaking week for my family ...

I just got off the phone with my Mom and we need some good vibes, thoughts and prayers send in the direction to my Sister In-Law, Klaudia.

She was admitted into the Hospital today after her having stomach pain all week. They determined she had a ruptured Stomach and while they were discussing the surgery she ruptured her Intestine. Right now she is in a Coma and when I find out more tomorrow I will post an update...

Truly not a good week for my Family right now. Two wonderful women in the Hospital :'(

Hugs,

R A C A

Carmen ...


  • Those of you who know me personally also know or have heard me talk about my most wonderful sister Carmen. She is the first born of our Clan of five kids and there are times I wonder if she was the one who has gotten the purest heart of all of us ;)
    Truly, I can describe each of my siblings in a certain and happy way but when it comes to describing my oldest sister the words, happy, laughing, giggling and joyful come to my mind, but also someone that absorbs stress like a sponge.
    For some wicked reason when Carmen and I get together we always end up laughing tears and giggling like little girls but she also inspires me constantly to live and eat better. She is the oldest of us and was 15 years old when I was born but I do not feel 15 years between us when we are together and I think by me having older siblings explains why in many cases my friends are older then me.

    On Friday morning I got a call from my Mom and she gave me the horrid news that my so adored Sister Carmen was in the ICU due to a Heart Attack she had during the night.
    Now she is in her 50's BUT the shocking thing about all this is that she is hands down the healthiest person in our whole huge extended Family.
    She has been a Flower Child and still is and has been a Vegetarian since her 20's. Her husband and her grow their own Fruits and Vegetables and she even grains her own Flour for breads.
    They are both very active and she has traveled to almost every Continent, often backpacking through Countries. She takes a bicycle to work in the summer and loves to walk and hike. They ski each winter and by just looking at her you would think she was a picture of health.
    She is this tiny person who is a tad taller then me and is a size 2 maybe 4! and I am 5'6''!
    I know in her case I would point the source of her heart-attack to her job. She has a very stressful position at a Bank and every time we are together she tells me how stressful the work is for her.
    I have been able to Skype with her on Saturday and Sunday and I was thrilled the two of us were able to be giggling and laughing with each other as we always do. She really is a ray of sunshine even if she looks so grey, white and tiny in her hospital bed. However, there is not taking lightly to what happened here. This was a serious and still is a very scary wake up call for her and for now she was moved into a private room out of ICU but a lot of testing will be done this week.

  • She is already asking to go home BUT the doctors told her she will have to stay at least until Friday maybe longer and then they will release her straight from the Hospital to a three week stay at a Rehabilitation Clinic.
    I am super proud if her as she has her mind in one place as even questioning the nurses already. They handed her a cocktail of pills that seem to be a standard for heart attacks patients but she asked to have each pill explained.
    One was a aspirin to help thin the blood,
    One is a Beta B blocker
    One was to lower her cholesterol (which my sister chimed in in pointing out she has this monitored all the time due to our genetic link and that it is always a tat high... Normal for us 
    The last pill made her almost jump out of bed as it was a blood pressure lowering pill!!!! Her blood pressure has always been very low and came in at 90 over 60. She asked the nurse if she wants her to have no blood pressure????
    That's my sister, always alert and now we have to hope she can also learn to stop worrying about work and learn to let go of outside stress factors .... I am not a good one to teach this but I have gotten better at this in the last three years ... thanks to JDM. Those around me know how much easier it has become for me to say 'NO' but I am still improving ....

    Hugs,

    R A C A

    Thursday, February 21, 2013

    Juicing and new Eating Habits

    Many of you know I have been embarking on a new adventure of more conscious eating habits.
    I am so happy to tell you that Connor decided to join me as did Alexander to a point.
    It all started when I was immersed in watching a lot of Documentaries about where our food supply comes from (scary) and how much the right foods (real foods) can impact our health (YEAH:).

    So I went and bought me a Breville Juicer about 3 or 4 weeks ago and so much has changed since then.
    My vegetable and Fruit intake has been my main food source with meat almost completely eliminated. I have cut down on Caffeine (NO more Soda and only a slip of three Coffee Cups in three weeks).
    I have cut back a lot on Bread's, Pasta and Potatoes. I still have some cutting back to do when it comes to rice.

    The way I approach this is by me buying lots of Fruits and Veggies that are in Season. I try to but locally produced Products or Organic. I then use about 70% of this to make various combinations of Juices and the other 30% I use for Salads, Soups and Smoothies.

    I still bake and everything I bake is from scratch. Organic Butter and Eggs, raw untreated sugar and unbleached flour. I have been good at not eating it but my three men still inhale it all happily :)
    I also have the challenge of still cooking meals as my two little boys are good at trying new things most of the time, they are still to set into the meat, potato and Pasta world to make a quick change and Ron is not ready to make a change like this.

    I wish I could tell you that changing my way of eating (it is NOT a diet as this is how I plan on eating for the rest of my life!) would have helped me loose a lot of weight so far but it is a slow progress as I am of course not perfect. I love, love, love Salt and Sugar, and even if it is Sea Salt and raw sugar it is of course still not god for you - lol.
    Also I find out that my love of traveling and eating healthy is more challenging! When on the road you crave the local fare and trust me when I am New Orleans I will eat Beignets and when in Italy I will eat that Gelato and Pizza;) So while on our trip to TX this past weekend I had some Tiramisu and a very yummy French Onion Soup at our favorite Bakery there.
    I also had my favorite Grilled Shrimp Salad at the Rockfish Restaurant so my meat intake was not completely under control ....

    NOW... here is what I can say that has been the best part about all of this change. I have by far more energy! I wake up each morning between 6:30 am and 7 am and I am good to go until 10 pm at night. I hardly crave a nap anymore and feel much more inclined to take walks and hikes with the boys and work out. Almost all my headaches are gone and I just feel physically much better over all. That alone is a huge payoff :)

    Now, I never thought I could easily quit eating meat. I am a German Girl that has loved Sausages and Meat for as long as I can remember. 
    I can honestly say it was very easy to stop eating meats by watching the Documentaries on Netflix. Just now recalling the images on how those animals we consume are treated makes my stomach turn. The meats that make it into the Supermarket do not come from little happy cows, pigs and chickens that run across the pasture and live this happy life. They get mistreated, abused, injected with Hormones and Antibiotics and suffer just horribly under this human control we have over them.
    Now if you want to jump even more forward you realize that it is not just the meat that is compromised it is also the product that comes out of these poor animals..... the eggs and the milk..... Now add GMO to the mix and even other food sources are badly compromised :(

    I am convinced at this point that we all are eating ourselves sick.... obesity, diabetics, cancer .... to me it all leads back to food..... many of these should not be an issue but sadly is.

    I know I sound as if I am preaching but that is not my intent. We are all on a journey and I just feel bad it took mine so long to come to this point.
    I only try to explain why I changed how I eat and why it works for me. It is however harder now for me to listen to people complain about all their health issues that could most likely be easily changed by them being aware what and how they eat.
    We all make a choice and in the end we have to live with it. So if you eat lots of fast food, smoke and drink and then face Diabetes, Lung and Heart Issues and down the road some Liver problems I am not the one going to be surprised..... and neither should you ... it is almost a simple math.
    I love cars and the way I look at it is I have never put poor quality gas or oil in my cars because I want them to run smoothly ... so why do we put junk into the one machine that moves us?

    Hugs,

    R A C A

    Sunday, February 17, 2013

    The Impossible and the precious Carpenter Family!!!

    Today my family of four was faced with the decision to what movie we should watch at the movies and for the first time my three men had no clue ... I saw my chance to put in my vote for a movie I heard about and wanted to watch ... 'The Impossible'.
    I will honestly admit that pretty much from the beginning I started doubting my decision as to how the boys might be able to digest this true story about the Tsunami from 2004 and the fight for life for one family of 5. Mom, Dad and three boys.
    Now that we watched the movie and had a nice dinner afterwards where we discussed the movie, I have to tell you I am very glad we went to see it!
    For one is was a true story, involving kids around my boys age! Then the fact at how fast life can change ... Truly in just a heartbeat! We already experienced a tad of this with JDM but nothing as life shattering as the Tsunami. We had a wonderful talk about how nature can throw us those battles with no warning and how helpless we humans really are HOWEVER it also taught us that you can rise and still find good in the destruction around you.
    We also talked about how you need to know to react when faced with disaster and what your true priorities should be.
    Yes, my boys are just 8, soon to be nine, but goodness so many children younger then them had to fight for their life's in this and any other disaster, nature or man made. Why should they not know? Will protecting your child help or disadvantage them?

    I will write a blog entry about another Family when I get home. The beautiful Carpenter, Sue, Kim and Kristen!
    This is one family I never met in person but who I love and adore. Kristen has battled and is battling JDM for a long time now and Sue, her Mom, has been an Angel and support to all our JDM kids and Families with her kindness and support and generosity in making the most beautiful quilts for our babies. Quilts that make our kids feel safe and loved.
    Kim and Kristen are twins like my dumplings and that draws me close to this family as well! Just a couple of days ago Kim was in a horrific horse riding accident and was thrown of her horse into a Jump.
    She is in ICU at Stanford and has to many bones to mention broken in her face. She also has a brain bleed and swelling ..... The team, very large team, of neurosurgeons are scheduling a 11 to 12 hour surgery as soon as Kim is stable enough. They will need to open her scull from ear to ear to start their work.
    Now all of the above is scary and heartbreaking in every way but now imagine facing this as a Mom on her own? To add to this heartbreak, Sue lost her husband not long ago to cancer, I believe. So now a widow who supports and watches over her 'babies' with a teachers income.
    They could use your prayers and support. I am asking if you read this and live in the are of the Stanford Clinic in CA please reach out and help! I wish with all my being I could afford to be there. If any family deserves and could use some help they are it! They are NOT asking for it but I am asking for them!

    Hugs,

    R A C A

    Sunday, February 10, 2013

    How we love Weekends!!!

    This past week went by way to fast once again but I don't mind as it always gets me closer to my favorite days during the week. Saturday's and Sundays :)

    Connor had to have some Blood taken on Thursday, followed by Physical Therapy. Both went very well and he did good on both accounts. My little baby boy is growing up as he does not even ask for numbing cream anymore during his labs and he showed good endurance during his Therapy.
    However, as it is there comes a price tag with all the events we dealt with this past week and for Connor the exhaustion point came on Friday about one hour after starting his Snowboarding lesson.
    The lessons run for 2 1/2 hours from 9 am to 11:30 am and at 10 am Connor was brought inside the Lodge and I was told he was not feeling well.
    It turned out he was just weak and tired and after getting him settled down and playing on the iPad all was well again. Alexander finished up at 11:30 am but told me that he had missed Connor very very much. 
    We left and decided to stop at Breckenridge's Main Street for some Cupcakes to shockingly be faced with a store that is no longer in existence!!!!
    How can this possibly happen??? I can not believe there are not enough people in and around Breck that eat Cupcakes! sad sad sad day .....

    Saturday we decided it was time to NOT leave the house! We had been on the go all week and needed a timeout!
    We finished school, cleaned around the house and then baked some Lemon Cupcakes .... if you can't buy any you have to make them yourself ;)

    Today was our one and only day during the week when we get to play vegetables and lay around lazily :) Pure Love for Sundays!
    We will have to step out tonight however to pick up Ron at the Airport and it just started to finally snow! I am thrilled about the snow! We desperately need the moisture and there already was a small Wildfire last week :(

    I am going to finish with some wonderful news: 

    I just received an e-mail from Michelle and Connor's labs look GREAT!!! We are now tapering down to 1 ML of the Prednisolone starting tomorrow and we will stay on this for 2 months until his next labs come up. This is truly a gift that made both Connor and I very happy!

    Hugs,

    R A C A

    Wednesday, February 6, 2013

    A Funeral...

    Today we went to the Memorial Service for Rick Thomas who passed away last week.

    It was very hard to go, as selfishly each Funeral I attend in the last couple of years brings me face to face with my biggest fears.
    It was so touching to hear all the stories about his life from his best friends and his sister and my heart broke when I looked at his Parents. I know I am on a different level in many ways when it comes to Religion but no matter what your believes are there is something fundamentally wrong when Parents outlive their Children!
    the first time I was faced with this fear was in February 2010 when I met Hope's Family and when we lived on the Oncology Floor for almost 4 weeks. 
    To imagine the pain and the loss is truly something that makes me sick to my stomach ... I knew if I was faced by this my heart would break to a point that was not repairable anymore. Yes, life goes on but I believe only a shadow of your formal self will go on ...
    Then there were the children ... three beautiful children that Rick left behind, who will not grow up with a Father on their side and of course they be told about him and what an amazing person he was ... however, in my eyes, no stories will replace the Father they lost. 

    Which brought me to my second biggest fear: Loosing my Parents!
    Now you say' "Well that is the nature of things." Especially what I just wrote above and I would agree BUT not in my heart......
    I am the baby of the family and I truly can not picture or imagine not having my parents here. I am who I am because of them and I start getting tears in my eyes just thinking that they would not be just one call away or a 10 our flight away. 
    Before I became a parent I always hoped to NOT outlive them so I would not have to deal with the loss, and I lived life in my teens and twenties that pushed the limits often and I felt as if I had nothing to loose and loved the thrills of pushing life to its limits.
    That all changed when I became a Mom and in my world everything shifted. Now I was not just responsible for myself but I need to be there, watch over and protect my babies....

    So this was a hard day but nothing compared to what the Thomas family is facing right now!

    Hugs,

    R A C A

    Connor's wish and huge success on the Incline :)

    Since Connor was diagnosed 3 years ago one of his biggest heartbreaks has been his limitation on what he can physically accomplish.
    Now I keep telling him how far he has come since then ... he is Snowboarding which I know is a rare thing to see for kids with JDM!
    However, on his wish and dream list has been going on the Incline with me!

    I admit I did not believe this would happen for two reasons! 
    One was the fact that the Incline is one of the hardest things I have ever done physically myself and it is a huge strain on a body that is not functioning at 100%, and second was that fact that it was illegal until last Friday! 'Yes', it was probably the most broken law in history here in Colorado as you could find lots of people passing that 'No Trespassing' sign each and every day. I would see the Military use the Incline as a workout and we all knew there were plenty of Olympic Athletes using the Incline, as well as all us crazy 'normal' people.
    It is one thing for me to trespass but I was not going to teach this to my two dumplings ;)

    So, since four property owners and even the President of the USA signed off to make this climb legal I had no more argument on this end...
    The second was Connor's physical possibilities and in his mind there was no limit to it. 
    I did figure I would take up Alexander first as he is my crazy little Athlete but as the dice fell it turned out Connor was the first to join me ...

    I told him we would only go up half the hike as the complete hike would be one mile up, 2800 railroad ties. 2000 feet vertical and a four mile hike back down the Barr Trail.
    He was fine with this and so we left at 8:30 am on Tuesday morning for our adventure....
    Now, we were lucky to find a great parking place and went to join the row of fellow 'hikers'. 
    I tell you that within 10 minutes into the hike I was already wondering if Connor's over excitement of energy would wear off fast or if it was me that had to struggle keeping up with him.
    From the get go Connor started almost running up the steps and I would have to slow him down about every 3 minutes as he would be ahead by 15 to 20 steps!!!
    Now truly I figured he would wear himself out but not so!!!
    He sailed up to the halfway point easily and it was me that had a much harder time keeping up with him!
    I was and am so so so proud of him! What I saw was a very happy fighter and warrior and he had the biggest smile on his face the whole day. He loved talking to fellow hikers and loved the compliments he got as he was sailing past adults left and right.
    This truly is huge and I felt another battle against JDM was won yesterday. Connor proved his body could rally and so could his mind! 

    We celebrated in going to a store in Manitou Springs were he bought a T-Shirt that reads, "If you can't get up the Incline you are to old." and he bought a Coffee Mug with a picture of the Incline on it :)





    Hugs,

    R A C A

    Saturday, February 2, 2013

    God and the Super Bowl....

    Once again I am faced with the fact that there must be many different 'God's' out there as I feel I believe in a God that lot's of people don't and vice versa ...

    I was truly taken back how many people were interviewed that believed that God would be watching the Game tomorrow and that those that pray more will have a better chance at winning ...
    Truly, I don't know where to even start with this one but let me try:

    So that means that people who love Football think that God will take a 'timeout' of watching over this world and all that is going on to sit back in his recliner to watch ONE country (that's really it when it comes to the Super Bowl) and will put all his focus on ONE game while ignoring the rest of the world and those that might not even care about Football ...

    So my advice to you is, don't do anything that might put you in danger as you might get hit by a bus when that first Touchdown happens ... also should you be at Hospice and getting ready to take that last breath tomorrow ... sorry, God won't be able to communicate with you if you decide this should happen during the game! 
    Also, if you live in a country right now that is fighting a war, don't ask for help tomorrow as you must know God is very busy answering all those prayers of the players and fan's that are playing or watching that very special game....

    Sorry if you feel I am to flippant but goodness people, wake up and don't degrade our one and only God!!!

    Nope, that is not the God I hope is looking over us but hey, if you like then lets just chose several Gods... One for Sports, one for Art, one for Politics and one for Gardening. I know here is more, so give me some ideas so we can all make our own lineup on who we should pray for on any given day as I am sure some pray for good grades in school instead of sitting down to study ... so a God of Education maybe???

    What do I know?

    Rant over!

    Hugs,

    R A C A