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It has been a long time since I have written a post for the blog. I will tell you the truth as to why it has been so long.

The honest truth is that I was taken hostage by this thing called, “The Challenges of Special Needs Motherhood”. While in captivity, I was ruffed up by the leader, “The Big Bad Insurance Company”. In addition to that, I had the wind knocked out of me, unexpectedly, by “Un-empathetic Friends”. Then there was a tumultuous experience with that thing called, “Keeping An Accurate Schedule”. I was drowned by “Paperwork”, “Emails”, and “Phone Calls” which are all related to big brother, “Special Needs Duties”. When they were done with me, “Worry” and “Frustration” set in to do a number on my psyche. When I had a chance to come up for air I breathed in precious family moments and gained the strength to fight back.

Being ruthlessly taken by that thing called, “The Challenges of Special Needs Motherhood” with the ring leader, “The Big Bad Insurance Company” created an opportunity for more active participants in my torture. I felt defeated not knowing what villain to tackle first. While captive and shut off from so much of the world outside, I took time to look for answers within myself and I relished in my free moments with family. This offered me the strength I needed to deflect the weapons of the villains that held me captive. Rendering them useless and freeing me from captivity all together.

Of course, the villains lurk around every corner. But, with strength, fearlessness and perseverance, they cannot do me much harm. Now I can get back to the important stuff like cultivating new and meaningful friendships, nurturing friendships that have weathered the storms along side of me, enjoying my family and getting back to writing and learning new things.

Prior to being taken hostage, I have had run ins with “The Challenges of Special Needs Motherhood” and “The Big Bad Insurance Company” (“TBBIC”). But, they never ganged up on me together with a bunch of others. For three years, we have had many medical needs related to our precious daughter. It was often a fight for those needs with “TBBIC”, but we always weathered it pretty well. Just recently, “TBBIC” denied several of our medical requests. It was as though the denial was just the normal course of action for “TBBIC”. Similar to the theory that you are innocent until proven guilty in a court of law; we discovered that you are denied until you fight to be approved in the world of medical insurance requests.

I venture to say that this set up is by purposeful design. From experience, I have found it is not easy to get a hold of anyone (who matters) to discuss an insurance denial situation. I imagine many people succumb to frustration and end up throwing in the towel, requiring them to pay out-of-pocket, not pay at all or worst case, they don’t get the medical care/item/RX they truly need. “TBBIC” is off the hook for that money; and I am beginning to think it is just the way they like it.

I thought this experience was worth sharing. Fight for your needs, for your family’s needs. “TBBIC” is a formidable opponent, don’t get me wrong. It will take time, effort and tenacity in order to fight, but, “TBBIC” is not counting on you for that. So, dig in your feet, roll up your sleeves, open your eyes and give them all you’ve got.

We have frequently experienced being denied for a service or a medical device and I think, “WTF, of course we need it, the letter of medical necessity, letter from the physical therapist, nursing notes and diagnosis all support the need”. The one thing missing is that I need to take an active role in holding the decision makers accountable for reading, reviewing and making an appropriate decision based on the materials and facts I have submitted.

Yeah, I know, you would think that it is a reasonable expectation that they would pour over the material you send and make an appropriate decision. Especially, considering that the material you submitted is per “TBBIC’s” detailed requests!

Being held hostage for some time, I had time to brood about all of this. Here’s my take, “TBBIC” has a detailed request list because they are banking on the fact that you will not provide all the information requested. And, if by some chance you do, they will not actually read it if you are not active in the process with your own voice or a representative’s voice on your behalf.

So, I shared this story as a reason for why I have been off radar for a while and I share it to help other people know how important it is to fight for your needs, even though it is freaking hard. You are not alone, it is FREAKING hard and you are right to be irritated and disappointed in the system that purposefully deters you from getting the medical attention/support/device/etc you or a family member need. Channel that irritation and disappointment into being a diplomatic (I know that’s hard but it is necessary), prepared and active participant in the decision-making process. To recharge your engine, take comfort in the other things around you in life, the littlest and tiniest positive things can help you move through the process.

Good luck! Happy Halloween!

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