What I'm about to say is something I never, EVER, thought that I would put out there for the world to see. But I am more desperate than I've ever been in my life. I'm desperate for our story to be heard. I'm desperate for a solution. I'm desperate for stability for both myself and for Aiden.
I've been suffering from severe chronic back pain since 2008, right around the time that Aiden was diagnosed with Autism. I had back surgery on February 29th, 2012 to correct a severe disc herniation that was compressing my nerves to the point that I was having a very hard time urinating. I was in unrelenting, agonizing pain. Every morning I would get up and walk down the hall screaming with each and every movement. I couldn't sleep, couldn't eat, couldn't think, I basically couldn't function. I thought childbirth was bad... Psssh! Labor and delivery was a walk in the park in comparison.
Surgery relieved the excruciating leg pain and my back actually felt amazing for about 3 months. And then suddenly all of my symptoms came flooding back and a few new ones popped up to keep them company. By the time my symptoms returned I was past the 90 day post op period and my surgeons office no longer took Aetna. So I was stuck trying to search for a new doctor and stuck with pain that I didn't know how to manage. I finally went to my PCP and kept in close contact as I tried to get in with a pain specialist. In July I finally received a phone call from a doctor who could schedule me in September. Done!
As I waited to see my new pain doc, I was discharged from Physical Therapy due to the instability that remained in my back. I knew at that point, that I was in trouble. And I was right. I had a new MRI done and when my doctor reviewed the results with me, I was stunned. I have a slipped vertebrae, moderate stenosis at two levels, severe degeneration at three levels, three annular tears, etc., etc. It's bad. Doc told me that it's most likely genetic and if that is the case then it would most likely affect my cervical and thoracic spine. I could have surgery but I probably would not walk after. There are no good options. And worst of all, I will never be able to work again. It was a lot to take in and I was crushed.
Aetna who is also my long term disability provider, suddenly and without cause, closed my claim on 09/20/12. So I have no income. You're probably wondering if I have a husband or boyfriend or whatever. That's hard for me to answer, but no. It's just me. Aiden's father left me in June and when I lost my disability agreed to help me with my bills until everything was sorted out. He moved back in because he couldn't afford an apartment and the house.
The whole situation blew up in my face on Tuesday. It was bad. Really bad. I will just say that Aiden's dad is dealing with a personal struggle. He's not in a good state of mind and I'm the only one encouraging, pressuring, whatever you want to call it, him to get help. He says he will, but avoids ever doing anything to take action.
So here I am. Rent is due next Thursday and I have $25 to my name. Uh oh. I have my health insurance due, I have water, gas, electric, phone, etc. I don't have the frills. No cable. No fancy electronics. The basics. But it adds up to a lot more than $25.
We wont be homeless. My mom and dad would never let that happen. But it would be horrible for Aiden. He doesn't do well with moves. You guys know how it goes. It's a HUGE change and he has autism. Enough said. It would be exciting at first, because we're living with two of his favorite people, but he would start getting upset very quickly. He will want his space and will get depressed about the losing the house. I know this child. He will regress because of this. :( And my BIGGEST problem is, how am I going to move? I can't even pack, my mom is on crutches, dad works six days a week, and that's about the extent of my support system! How will I pack, let alone move? And my credit. :( I've worked so hard to fix it and now there will be an eviction and a judgement that will stay there for 10 years. It sucks.
It is so unfair that Aetna can get away with this. They are ruining my life! I've provided them with sufficient medical documentation and everything they have asked for. MRI's. Multiple doctors saying I am disabled and can not work. A physical therapist who can't even work with me. WHAT ELSE DO THEY NEED??? They are basing their decision on the opinion of two doctors who have never examined me! Social Security will find a doctor in your area and have them examine you if there is any doubt about your claim. Why aren't the private insurance companies required to do the same thing? They should be held to a higher standard and they need to be accountable for these types of decisions. I have been receiving benefits for a year and they decided they just didn't want to pay out on this claim anymore. Now I have to wait for the appeal. I have an attorney but I'm not too confident in that right now. I applied for Social Security and should have some kind of answer in five months or so. Five more months. Aetna SHOULD be paying me what is mine! My son and I should not have to suffer because they don't want to pay out. I paid my premiums. I meet the qualifications.
It is wrong that they can do this. I am going to lose my home. My insurance. My access to doctors. My medications. My ability to function. My sanity. They are taking everything from me with no reasonable explanation! Without my medication, I don't see how I'll be able to function at all! Even with strong meds and medication for nerve pain and for muscle spasms, I'm still in a lot of pain. I can't imagine how bad it will be without something to minimize it.
Again, I don't know exactly why I am sharing this. Maybe you can share this with everyone you know. If it happened to me, it can certainly happen to ANYONE! Knowledge is power and there is strength in numbers. I know that public opinion counts for a lot, and I know that there are people out there who have to relate with me. All I want are my monthly benefits so I can continue to survive. I was struggling WITH income and now I have none. Aetna NEEDS to correct this.
This is a last-ditch attempt. I know they will pay eventually, but unfortunately if this continues there is no repairing the damage that will be done. Money doesn't fix everything and if we lose our home, it affects my family in more ways than I can even count. I've been praying for a miracle! God is good. I've seen him in action... My prayer is that they reinstate my benefits so that we can keep our home and medical coverage!
I've spent the last few days trying to raise money for the walk on Sunday and it's been a fabulous distraction and I don't know what I'll do when it's over. It's taken a LOT out of me physically, but I haven't had to think about the situation at hand. Now, the big day is almost here and today it hit me hard. Really hard. I have only a few days left until rent is due. I told Aiden that we might have to move this morning and he looked confused. I don't think he totally gets it. I think he wants it to be one big slumber party at my moms house. But it wont be. It will be so hard. It's a small house and I have an eleven year old sister... Ugh. It's just a lot.
Now I'm trying so very hard to put together a small appreciation party for the team. However, I'm in a lot of pain, my mind is distracted, and my house is not up to my expectations. Sorry team - I did my best for you. I'm so grateful to every one of you.Thank you for listening and thanks for hopefully sharing this.
Amanda
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