Yep, its been a while since I blogged about Brennan's journey. These past few weeks have been a rough one. Lets just say 2017 was a roller coaster. We have been up and down and around and around and around with doctors and other medical professionals. Brennan still has good days and bad days. But I want to take a moment and talk about Chiari, EDS and everything in between. I guess this is my way of blowing off steam. Those that know Brennan know that he has had a rough road. We also have many friends who continue to fight the good fight even when they don't want to. Chiari is a monster. SURGERY is not a CURE!!! It only slows down the progression of Chiari. Those who have had the surgery may experience some relief for some time. Others have gotten worse and other symptoms arise out of it. Some may need repeat surgeries for a shunt if they have one because it may malfunction or not work at all. For the family of the person who has Chiari, it can take a toll on them also. I have known families it has affected greatly. Family members who have had to step up and help with daily living, chores or just helping them function in general. Depression is a big one. Those who had a life before Chiari can not longer function. It eats away their soul but yet they are pushing themselves daily until they can not longer push. I have seen it, both in Brennan and friends. Sleep away the pain, getting angry because the pain is real. Yet, some people say "Oh well, they don't look". There is no "look". It is an invisible condition. Until you have had Chiari and experienced it for yourself or even have talked to a family member of a Chiarian, please don't judge.
EDS... Ehlers Danlos Syndrome, another monster that lurks around in the backgrounds. Pain that is real but yet society just looks at you like your crazy because "it can't be that bad" or "just a flare up". Pain pills and sleep are your best friend. Eating has become a chore and your body can't handle it so you have a feeding tube to get the nutrients you need. Joints hurt so bad you want to tear them off. Stomach issues too embarrassing to talk about with others because they don't understand. Muscles weakening and can't walk long distances that you you end up in a wheelchair. You have to get a wheelchair card to park close and get angry people yelling at you because you are not "disabled" It is also invisible and debilitating. You get the " you don't look sick" speech. Again, until you experienced this for yourself or have talked to a family member of an EDS'r, please don't judge.
Lets talk doctors, specialty doctors specifically. Now, there are some doctors out there that truly know what they are talking about. That have actually studied and understand what the person is going through. Then there are those who keep passing you around to one doctor after another after another, you are racking up medical debt so quick because they can't figure out what is going on. Some how you can not get assistance either because your either making to much or they just deny your diagnosis. That is a whole other story we will save for another day. Some doctors just give up in general and quit seeing you because they can not help you anymore. This is the one thing that really sets me off. We have been battling this for 3 years now and yet we doctors saying they can not help B anymore because there is not much more they can do. Do you give up to as a parent or do you fight like hell to get the help he/she needs? I spend a good majority of my time researching and reading articles on doctors and studies that have been done with Chiari and EDS. Yes, this is not an easy thing to deal with. I will be truly honest, it has stressed me out. These last few weeks I keep asking myself, why this? Why Chiari, EDS, being on the Autism Spectrum, ADHD, Oppositional Defiant Disorder, Sensory Processing Disorder? Why, why why? Why can't it be something easy to deal with and handle but instead we are up against what seems like a million things in one. For my friends dealing with Chiari, EDS and whatever else that has been added to their list they have felt the same way. If you look up Chiari I will assure you will see the list that goes on and on and on for things associated with it. It is always and will be a continued fight.
Insurance will always be a fight. From my opinion, I do not think they read charts and understand the diagnosis. Denial of treatment should never be a option for anyone, especially when you have a service/treatment that is very much needed. Makes me sick when you see "medically not necessary". And how is it not "medically not necessary"... did you read on the diagnosis? Understand what it does to the body? Nope.. and that is how it ends. Appeal it.. yes.. denied.. yes.... breath.. breath... breath...
So to my son and to my friends who fight this.... we continue to spread awareness and fight on. We may all be tired and stressed out but we have to continue on. 💜💜
