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

Saturday, June 29, 2013

Grateful and Sad...

The year 2013 has brought so much pain and uncertainty to the inner circle of my family and I am struggling with answers to the why....

So many times I remembered talking to my Dad how lucky and blessed we have been for decades to pass without ever have tragedy touch this huge inner circle we call our immediate family.

My Mom and Dad, five kids ... Four girls and one boy. Now add five spouses and 13 Grandkids where two are married and two are engaged and three Great Grandkids and our core is  32 strong.
Never had cancer or accidents entered that wall that surrounded us and all that changed when JM - Juvenile Myositis causes the first fracture in 2010 that put us all on notice that we are possibly not immune....
Luckily we fought back started feeling safe again.
 Granted I have lived with the fear of my parents approaching age for years but just as I tell my boys we will reach the 100 year mark I thought I could will my parents long lividly as well!

Then 2013 rolled in .... No big waves initially, just the Influenza for Connor which had us miss a wedding in January. Then came the call from my Mom on February 17/18 that my so beloved and adored sister Carmen suffered a Heart Attack during the night and was in the Intensive Care Unit in Heidelberg. Just typing this now gives me goosebumps again as that felt like a punch in my stomach.
Just three days later I received another call from my Mom. This time my beautiful sister in law was brought to the Hospital by my brother due to severe stomach pain. It turned worse in seconds after their arrival with a ruptured stomach and colon and she has been in and out of a coma since then. She is in the Intensive Care Unit now in Bad König and each time we think there is slight improvements as in her opening her eyes she turns two steps back. She fights fevers and had to many surgeries to count. 4 months and counting....

I will forever be grateful to my husband who took the boys and I to Germany for 2 weeks in April to celebrate our babies 9th BD with our family here. Looking back now, but not realizing it then, was and is the greatest gift I could have ever received.

Now I talk to my Mom about every two to three days when I am home and I was very edgy about the news comping from my Dad lately
He had had a checkup and his bypasses were pretty clogged up again and he was told he needed two new stents put in. Looking back this last procedure was the first nail in the coffin ... he was told they could not let him stop with his blood thinner medications as had been done in the past due to their fear of a heart attack. The procedure was done and my Dad went home after three days in the hospital with a huge bruise that covered half of his body. He had also received a new medication that he was unhappy about. He said it made him feel sick and after a few days of taking it and reading the side effects he decided to discontinue it. That was the day I had facetimed with my Mom and Dad. he looked to grey and tired and I recall clearly talking to him to sit down and rest as he had bern standing up and leaning over my Moms shoulder to see us on the iPad. Sadly by then it was already way to late. The medicine had caused internal bleeding and he had lost so much blood that he needed blood transfusions. From the loss of blood his heart valve was damaged and on Saturday the Surgeon told my family that he will be a top priority for a heart valve replacement surgery the following Tuesday. My Mom and Sister drove home after the conversation and after visiting with my Dad who was alert and awake and who signed the surgery documents.
I first got a Skype call from my Nephew Sebastian that very night who said that Papa had gone into cardiac arrest and that the team is working on him and that the whole family was on the way to Heidelberg. 30 minutes later I got a phone call from my sister Carmen that he had left us. The team at the hospital worked on him for 1 1/2 hours and his death was confirmed at 21:45....
Truly I felt as if the earth opened up and I was falling into a crack without anything to hold on. Ron was flying and the boys were luckily playing outside. I cried and cursed the fact that I was so far from home.  Luckily I was able to get a hold of Ron who has been my Rock since this day! He took charge off getting me set up for a flight out and I just had to function to pack bags and then face the boys. They came running in about 45 minutes later and I told them to sit down on Mama and Papas bed and I gave them the news. I was lucky to have had 42 years, Ron 15 and the boys 8. The three of us curled up and cried for a good 30 minutes before I put them on the sofa with their iPads as a distraction.

To this point my biggest challenge has been to stay strong and not let my pain show as I know I need to be the rock to others now that my Dad was to me.
The nights are my enemy now and thanks to Ron again, I am now in Germany to help my Mom and to be surrounded by my sisters and my brother. I know in my heart that it will be hard to go home and deal with this heartbreak without the distractions I have here.
I crave home and the need for everything to be 'right' again but how does one prepare to leave the only parent one has left??????
My parents were the perfect match.... 58 years of a journey that my Mom compares to a river. Smooth and Calm. Never were there fights, and NEVER was there ever the word 'divorce' in either's minds or thoughts. They were friends and lovers who created this amazing proud and strong family.

Now after all this I would have thought how much more can we face as a family? ... My brother in law was admitted into the ICU the week of the Funeral with so much Fluids around his lungs that it caused him breathing issues and lots of pain. He was admitted to one famous Cancer Clinic in Germany, the Thorax Clinic in Rohrbach by Heidelberg. The break we got was that no cancer was found! Now they are still keeping him as there is still no explanation about the fluid which keeps draining at a steady pace....

Klaudia of course is always on our minds. We got to see her last Saturday and we are planning on going back next week. 

I am not going to challenge or question God. My Dad was a strong Lutheran who took great comfort in his believe. We found a very worn piece of paper that he had made and handled often and that we believe gave him peace:

Psalm 23
Der Herr ist mein Hirte,
Mir wird nichts mangeln.
Er weided mich auf einer grünen Aue
Und führet mich zum frischen Wasser. 

Hugs,

R A C A


Thursday, June 27, 2013

20 January 1934 - 8 Juni 2013 💔

To this point in my life there had been only one date before June 8, 2013 that caused me pain and fear. That was January 11, 2010, when the word and world Juvenille Myositis entered our life and changed the course of Connors life.

Now I have to add June 8, 2013, as a date that changed my life again and caused me pain I had never known before. I admit I was always afraid of the day I would have to face this but nothing could ever have prepared me.

June 8, 2013, just 4 days after my parents 58 Wedding Anniversary my so beloved Papa, my hero my strength passed away.

If you look at the title of this blog entry you might see he was 79 years old. A good age as we have been told many times that just does not ring true for me. 79 years and about 50 years to short for me! 
I admit I have always been a stubborn child, tne youngest of 5 children who always voiced as a child into Adulthood how unfair I found that I would get the least amount of time with my parents due to the age disadvantage. 
As a teenager I told with a huge confidence that I do not wish to outlive my parents as I knew then that their death would not be something I could deal with. So I lived life to the fullest and never feared death which I admit only changed when I had my own family. All of a sudden I was faced with fact that I have responsibilities and need to be there for others as well....

Now looking back I wish I had spend more time with them and had come to Germany more then once a year. Even in the hospital during my Dads last few days he told every nurse, doctor, patient how he needed to get better do he coud continue to fly to the US and see us there. Just three days more and he would have gotten a new Heart Valve.....

Tears are a constant companion during the night but I know that during the day I need to be strong for my Mom.

I hope everyone knows this kind of love that I received from my parents all my life!

Hugs,

Anke 💔

Saturday, June 8, 2013

Running as a form of Therapy :)

So while I might never call myself a runner I have fallen in love with running 5K's and going on little 1 mile runs on our Mountain, hike with the boys in the Fossil Beds and get myself convinced to go on a 5 mile run this past week :)

Now I still consider most of my adventures a mix of running and hiking and I am fine with this. The biggest benefit is by far the good it all does for my mind.

This year has been very very rough for my family in Germany. So far I mentioned my beloved Sisters Heart Attack in February, followed just three days later by my beautiful Sister In Law's tragic health incident that put her in the ICU and in a Coma. She was just moved a couple of days ago to another Clinic that specializes in Neurology. So she has been in a Coma with only few episodes of opening her eyes since February and we are now well into June....
A couple of weeks ago my Brother In Law was admitted to the Hospital with Water in his lungs. He is still in the Hospital and we are all on pins and needles about his diagnosis....
Last week my Dad ended up in the ICU due to internal bleeding and him needing a Blood Transfusion. He is still in the ICU as the loss of blood damaged his heart and his Heart Valve is now damaged beyond repair as are two of his main artery's.
He will receive surgery on Tuesday as long as he is stable enough. My wish is to be over there now but the logistics are a nightmare. Summer travel for Airline Employees is a huge no no. Oversold Flights are never a good setup for getting on a flight when you are a Standby and on the bottom of the totem pole.

So running is truly a form of therapy as in clearing my mind and worries. As is my latest fun in Yoga. Trying to calm down my mind is a huge challenge and still makes me laugh more often then not ;)

I am so grateful right now that all is calm and well right now here in our immediate home! If we had any emergency here I might feel like going for a run and keep running - lol .... Of course there is also the better part of me and the fighter in me which will always be stronger then the flight instinct so I am taking a deep breath and know no matter what the world goes on and so will we ......

Connor is in need for another Blood Draw but has been doing really really well. He got his Methrotrexate Shot last night and while it is the reason that he so dislikes Fridays he has been really good about it.

Oh and may I also mention summer in Colorado ROCKS! We have the most wonderful temps and sunny blue skies. We even had a couple rain/thunder storm showers the last few days which this dry area greatly appreciates.

Hugs,
R A C A

Monday, June 3, 2013

Daily Yoga (App)

So my newest adventure after I have been immersed in Juicing (still going strong) and Herb Tinctures (still giving it to the boys) I am now venturing into the world of Yoga thanks to this fun iPad App 'Daily Yoga'.

Now I figured any 'exercise' that adds peace and flexibility to my life should be something good. The app is easy to use and comes with a selection of very relaxing music. So far so good.

Last week on my second day of yoga immersion I went to invite my family to join me. This session ended in me laughing tears as first they start with the easy breathing exercise that says to breath in deeply the clean fresh air. Well all I could smell was dirty sock smells around me. Then the poses are challenging enough without having to watch my three men tying themselves into knots. Yes, I admit I am not much better at it ;)

Then came days three and four... On day three I became a believer that the previous owner of our adopted cat Max must have been a yoga master. Max went crazy and started to climb on top of me and under me during the whole 20 minute session. First he climbed on my back during the down facing dog or what ever it is called only to put out his claws for some acupuncture treatment when I had to move to a standing position. The following day Bella thought she should join this yoga adventurer and started doing the same. Nothing like having cats rub all over you and cat hair in your face to get into that calm and serene feeling that I was expecting to have .... Maybe this week be better but then who is the judge in what peace of mind means to each of us. In my case it might be laughter that is needed more ;)

https://itunes.apple.com/us/app/daily-yoga/id545849922?mt=8

Above is the link to this wonderful app. Try it out and see if it makes your day as well :)

Hugs,

R A C A