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

Wednesday, February 1, 2012

Matching Life with Politics

Today I decided to take the boys to the Ute Pass Cultural Center to listen to Sen. Rick Santorum speak. I figured if you have the chance to see a Political Candidate speak you should go and listen.
After all, I told the boys this is not just about your own political believes but to hear other peoples ideas and also ask questions if given the chance. There is a chance, even if I think it is a slim chance that he will run for President this year, but given his age he might be a factor for a long time to come.

So we left school early and found ourselves in a very packed avenue. We were able to sit on the floor in front of the stage with several other children and Mothers, plus young Adults.
Connor was prepared to ask a question if given a chance. We listened for about one hour and then he opened the Microphone for questions.
Now you have to realize we did NOT go there to cause any problems but state a very big concern that is impacting our life on a daily basis.
Connor new he wanted to ask him if he could make medications affordable for all. He knows that his medications are costing a lot of money and he also knows that some children with JM do not get the same treatment as he because of the cost factor.
Since we talk very openly about everything in our lives he knows that his treatments during his first year cost our Insurance 1.3 Million. He has a 5 Million Lifetime maximum, and with no Cure around yet the will travel through life with a black mark on his Medical Charts that will always count him as a person with a Preexisting Condition.

I had a feeling that Connor's question he wanted to ask and my concerns would hit a snag when Sen. Santorum said during his speech against ObamaCare and RomneyCare that he would not force Insurance companies to take customers / patients with preexisting conditions. He said to force them to do this would punish other Clients as it would raise the cost of Insurance premiums.

So there Connor was sitting with his hand raised and the Microphone went first to a woman who asked a similar question that he wanted to ask. She said that the Pills she is taking cost $900 a month and if there will be help in this regard.
Sen. Santorum voiced the fact that he would not influence the Pharmaceutical Companies for the one reason that he believes in Free Markets and that they need to pull in profits so they can in return use this money to develop new Medications and focus on Research. He then stated that the problem with people is the fact that they rather go and buy a $900 iPad then pay for medications that can save their lives! Now, you know my heart started beating faster right then because I then realized that in no way would Connor get an answer he would find comfort in but neither would I.

There was another question after this and then Sen. Santorum tried to wrap it up. However a Lady behind us and a Gentleman said that he should take the question of the little boy upfront - Connor. So here Connor stood up and asked "Can you make Medications Cheaper?"
Santorum looked down and made a joke about him not being sure if he wanted to take a question from someone wearing a Packers Shirt, and after a few laughs he again said he would not restrict the Pharmaceutical Companies and that Free Market needs to rule. He said that those that go and buy cheaper medications in Canada and Mexico are hurting our Pharmaceutical Companies and that they are stealing money from them that they can use to develop new medications. He said that those that need medication will find a way to pay for them. Now he used prices much lower prices for examples then the ones we are faced with.
This is when I got pretty heated up and, yes, raised my voice. I pushed Connor forward and told him loudly that he is looking at a child whose medications and treatments are costing 1.3 Million a year and not just a couple of hundred dollars! I said I would give my life in a heartbeat to save my son but what future does he have when he runs out of his lifetime max and no one will want to Insure him! I told him how it feels to see kids dying because they are not getting the treatment they need. KIDS!!!! Not some middle aged Americans. KIDS!!!
Well, he pretty much ignored me but got some in the crowed going about we need to keep this a Free Market and that we will be on top by having the best medications available in the future to come.

Well, good for him because I am sure he can afford those medications. The rest of us I guess will be screwed.

This was the end of this event. He walked off the stage to the right and we headed to the exit to the left.
I was sure we would be one of the most unpopular people in this room and I was surprised when an elder gentleman patted me on my back on the way out.

I truly did not go there to cause a scene. Healthcare and my son's quality of life is the most important issue for me and I truly wanted the boys to learn how to ask questions and also listen well to the answers. See if they like what they hear and have them make their own opinions.

Well, Connor was almost in tears because he thought Sen. Santorum does not care about children and there families that need help. I did NOT put this in my son's head ... he heard the message loud and clear from Sen. Santorum himself.

I did ask the boys at home if they thought I did not acted appropriate because I raised my voice. They looked both at me and said "No Mom, we were proud of you and yes you were loud and you seemed angry but you did this because you care about us and other children.

So there, I am glad we went but you can be sure he would not be on our list to vote for. The boys were actually upset after they told me they would not vote for him and I mentioned they couldn't anyway because they are to young. They are ready to vote NOW and I am guessing they would do a lot better then some Adults out there :)

Oh and as to the Medication versa iPads? I am sure the Lady that asked this question would love nothing more then buy an $900 iPad each month for the rest of her life (by the way I remember them to be cheaper) then get the medications she needs --- sarcasm!!!. How does $900 for medicine a month even compare to buying an iPad that will last for 3 to 5 years? Plus I thought he would have compassion since he has a very sick daughter. I did not see that and that is what shocked me the most.

Glad to be home! and now off to preparing our home for our visitors from AK that are arriving tonight :)

Hugs,

R A C A

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