Insurance Battles, Chronic Illness and a Broken Heart
- May 29, 2017
- Theresa Bertuzzi
Spent the evening sobbing on my porch after reading two more denial letters from our insurance companies for the new treatments that I need. It has now been three months since I was supposed to start these treatments and I have made zero progress. Even my insurance broker has been unsuccessful. The poor guy has been trying and trying to get me insurance coverage and, although I feel bad that he is also getting the run around, I do take a little comfort knowing that someone else feels some of my frustration. God bless him too because chasing after insurance for me is absolutely not his job at all and he is only doing it out of kindness and friendship. I adore you and know that you tried your best. He is still trying to get me some coverage through Trillium and it is my last hope and a prayer at this point. I will wait to hear back from them and continue to wait for the treatments. 3 months and counting…
It is very, very hard not to take it personally when you are denied drugs that you need to survive. I mean, for goodness sakes they will cover someone’s Viagra but won’t pay for drugs that will keep me alive. My doctors have tried all other drug avenues and my immune system is not calming down and going into remission. They know that Rituxan will fix the problem but they had to put me through all of the other drugs in order for me to be even considered for Rituxan by the insurance companies since Rituxan is considered a trial drug here in Ontario therefor they had to prove that all of the other drugs did not work first. It is a drug that is covered by the drug plans in both Quebec and Manitoba because they have had so much success with it but not here in Ontario. Kind of frustrating that just a 20 minute drive away, in Quebec, I would qualify for this drug with absolutely no questions asked. Once I get coverage for the drug I will only have to have the treatments every 6 months and I will be able to get off of the other immunosuppressants that make me ill every day.
I realize that I look healthy to everyone around me, which is also frustrating because no one really understands what I am going through… oh the joys of invisible illnesses. I suppose I could not wear makeup, not cover the bruises, and not wear my wig when I go out in public and then everyone would know exactly how I am really feeling, but that would just scare the hell out of everyone because it is NOT pretty. LOL The truth is that I say that I am ok to everyone around me but I have a migraine headache at least three days a week, I am light headed to the point that I lose my balance pretty much every day, my vision is so blurry in the evenings that I am unable to make out faces on the television and I often have to wear my son’s reading glasses in order to get my computer work done. I am also nauseous from the Imuran and/or Methotrexate every single day. I have now spent 9 full months where I have not had a single day where I have not either thrown up or spent the night running back and forth to the washroom with Diarrhea. Graphic, I know, but it is the truth. If you want to know what it feels like imagine having the stomach flu where you have body aches, a fever, night sweats, headaches, diarrhea and vomiting. Now imagine having it every day for nine months with no break. Now imagine having to carry on with your job, your chores and your life while having that flu. It sucks! But it has become such a part of my life for so long now that I have adapted to the point that no one even notices that I am sick anymore, even people who are closest to me. Just yesterday Danny commented to the fact that I was running back and forth to the bathroom a lot the night before. To which I started bawling and pointed out that I actually do this every single night and have done so for the past 9 months he just has learned to sleep through it and I never complain about it because it is now a part of my life and what is the point of whining about it.
Another reason I no longer say how I am feeling is that the truth is that people can only bare dealing with a sick person for so long and when you realize that everyone around you has reached their limit you quickly fall back to the “I’m OK” response because you know that you are going to chase everyone around you away unless you pretend that you are well. So you slap on that smile and try to hide every single moment of weakness. I work my job, I take care of my kids, I do the housework and I help out friends and family all while feeling like I have a constant stomach flu and fever.
I guess this is probably not the healthiest way to deal with a chronic illness but it has always worked for me and honestly I get sick of being sick myself so I can’t blame everyone around me for losing patience and not wanting to hear about it. I don’t want to be sick either so I take on projects and commit myself to things for work and my kids that I am not altogether certain that I will be able to manage but I am determined to see it through anyway. Then I disappear from family, friends and my blog for days on end while I try to recover from the sheer exhaustion of just doing everyday things. Should I pace myself and not exhaust myself? Absolutely, in theory this would be the smart thing to do but this means that I then get rest while I watch myself slowly disappear from my life. As people help you out with your job, your chores and your life it feels as though you are already gone only you are still hear to witness and watch your life go on without you. I don’t want to miss the field trip with my child, I don’t want to miss my kids games, I don’t want someone else to train my franchisees so they don’t even know who I am, I don’t want to miss out on a single part of my life so I will not be logical and rest when I am tired. I will get up and keep going and when someone asks me how I am feeling, I will say “I’m Ok!” because I don’t want to have to face the torture of watching my life go on without me.
Tonight though, I am not Ok because this life that I am struggling through could be all better if only the insurance companies would step up and cover the treatments I need. It will almost cost them no additional money because the treatments I need cost about the same as all of the meds I am currently on and I will no longer needs any of those other drugs. It is just a policy that they do not cover this drug and they are not willing to bend. They are also very careful not to talk to you themselves. All communication is through your doctor and middle men and responses are sent by mail so that you officially stay an anonymous case number. They would not want to hear your story, meet your family or see what they are doing to you as a person. No one should have to go through being this sick and going through what I have had to go through and then deal with the stress of fighting with insurance companies.
Yet I feel horribly guilty complaining because I know that there are people who are even sicker than I am with cancer, diabetes, MS etc… who also have to fight with their insurance companies and get turned down over and over for drugs that could prolong their life. Why should I get these drugs if they don’t get theirs? There are a whole lot of people in our country going through this same experience and it is very wrong. Just when these people are at their sickest they need to then wage a battle with insurance companies and their government in hopes of getting the treatments they need without bankrupting their families. Who decides what drugs are covered and what drugs are not. Why is it that I can get free yearly massages from my insurance company but I can’t get the meds to save my life? The ridiculousness of our system amazes me. If you want to turn me down for my life saving medications then at least come to my house, look me in the eye and tell me to my face. Look at my children and stay to watch me breakdown as I try to figure out whether it is worth changing everything they know to get the treatments. I am madder than I have ever been in my life. I won’t change my children’ life in order to get these meds but I also won’t stop fighting to try and get them either. I will put my hope in Trillium right now and pray that the province will cover the drugs but I am not that confident that I will be successful. I am pretty sure I have a much bigger fight ahead of me. Scary thought when all I want to do right now is curl up in a corner and never come out again. There are not enough antidepressants to get me through this. LOL Wish me luck!