Snippets

Life's been cruising along...

Shelbie is doing so much better as we wrap up the week.  Last weekend, I attended a Neuro-Immunology conference on 4 of the most rare, neuroimmunology diseases.  I'm talking super rare diseases that our doctor treats and she is one of just a handful of doctors who specialize in immune diseases of the neurological system.  Common Variable Immune Deficiency or CVID, which my kids have was one of the diseases discussed.

When I say discussed, I mean...a 2 minute run down of symptoms and the time it takes to say, "We don't have any good data on this disease."  In a room full of close to 100 people with these rare diseases, only one other person in attendance had CVID and that diagnosis was still up in the air. 

At first I felt like I had wasted my time but the more I considered the day, I realized many things about myself and the way I advocate for my kids and have tried to engage the despair I felt at first, instead of running from it and being angry. 

On a related note, the first line of treatment for CVID is plasma transfusions.  Shelbie and Sam are both dependent on this and will be for the remainder of their life.  This week, I was notified by one of our specialty pharmacies that there is a shortage of plasma and they have to spread out the supply they are able to get, among all their patients, which means, they could only guarantee us two weeks worth.  I have reached out to some people on a few of the support groups I am in and many have received the same message.  I'm not sure the nature of the shortage but I'm really hoping we don't have to go without. 

I have a few big things in the works around here...I've been busy over the past 6 weeks creating.  I've decided to start a wedding/party rental business.  I'll be renting backdrops and table centers.  I've got 4 different backdrops designed and built and three different styles of table centers as well as other props like lighting, Christmas trees, sleighs, lanterns, display boxes, candles, and more!   My goal is to have photos taken this week with a formal launch next weekend!  It's a been a huge undertaking but something I'm really happy with and excited to get started.  I really want to make weddings affordable.  I've helped out with a few weddings this year and it's astounding how expensive a wedding service is.  My theory is that people have more time than money.  So, everything is ready to go.  They will pick it up, put it in place and return it.  I'm hoping to stay out of the equation but we'll see how things go.

I am also done with my health and wellness course and should have my certification done in two weeks.  I'm exploring what to do with this now.  I have my niche of people I want to service and I have a doctor who is willing to help me with referrals as well.  More to come on this as it unfolds.

Finally, I applied for a 3D designing job.  Right about now, I'm sure you are wondering what on earth I am doing my life!  Me too!  Actually, there is a method to my madness but it's still unfolding.  Ultimately, I'm undergoing a remodeling of sorts so, stay tuned.

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