Open Hearted Sharing

Wanted to start this blog with saying that although sometimes it is very hard; Steve & I want to be very open with y'all, we come from a genuine place where we hope our true journey will help others. Sometimes it's hard because the things we share are very personal & sometimes it's because I feel like we need our space or privacy.  A lot of thought goes into what we share & how we do it.  We never want to come from a negative space, but we always want to be honest.  Some things with ALS just suck & there is no way to put it other than just that.

So a small update without giving too much information.  As we know, the disease progresses and more things happen to a pALS (person with ALS) body.  For instance due to Steve only being on TPN (IV food) because of his gastroparesus (unable to clear stomach) he now has developed what is called anemia of chronic disease.  Where he is no longer able to make red blood cells & will require blood transfusions frequently.  Thankfully we have a great team working with us to assist in this complication.

Well this weekend, another challenge has presented itself to us.  For those who wonder, Steve & I can still be intimate. :)  Lucky us right?  Well, we thought that might be taken away from us recently, as Steve is no longer able to void (urine output) without a catheter in.  Progression has made his muscles too weak.  Steve & I  have spoken with our nurse/doctor & we intend to do an in & out foley catheter, which is less invasive, while still making sure Steve is able to empty his bladder.  We had a sad few hours until we discovered there are ways around this new complication, as there usually is.  

We feel blessed to be surrounded by so much love & support--We want you to know that it does help us get through the hard times and to continue this fight in such a positive way.  

More updates on some upcoming things we have coming up tomorrow! Here are a few recent photos. 

Lots of love.