About Me

A hilarious view of life with multiple autoimmune disease and chronic illness. Lupus, Dermatomyositis, Myositis, Alopecia, Raynaud's Syndrome, Sjogren's Disease, Depression & Anxiety. I have it all and have learned to not only accept what come my way but to see the humour in all that life has to offer. If you know someone struggling with chronic illness please refer them to this blog. My hope is to brighten the days of those who need it the most and give hope that there is still a beautiful life to live even if it may be a little bit broken!

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Insurance Battles, Chronic Illness and a Broken Heart

Insurance Battles, Chronic Illness and a Broken Heart

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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.

 

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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!

20 Comments

  1. SARAH McCormack

    30th May 2017 - 8:12 am

    Oh Teresa……my heart breaks for you. Such a ridiculous system…i know! How about a Go Fund Me for this treatment! How much does it cost??

    • Theresa Bertuzzi

      31st May 2017 - 11:06 am

      10000 dollars a dose! AGHHHHH! I’ll get coverage some how some way!

  2. Sarah mccormack

    30th May 2017 - 8:15 am

    Never mind..just saw your reply on fb post. Prayers for trillium. Hang in there warrior princess!! Xox

    • Theresa Bertuzzi

      31st May 2017 - 11:05 am

      You are just the sweetest!!!

  3. Debbie Young

    30th May 2017 - 2:10 pm

    Theresa, I love your blog. You have just summed up everything I’m feeling: frustration, wanting real understanding of what it’s like to experience these diseases and being unable to participate in life as fully as we would like. I also tell everyone I’m okay when I’m not. I don’t want to be the wet depressing blanket that rains on everyone’s parade by constantly bellyaching about how I am feeling. I don’t talk about being sick anymore either. I just keep on pushing and trying as hard as I can. I do feel very alone handling these diseases and trying to be “normal” like everyone else. Not wishing ill of anyone, but I wish they could experience for just a few minutes how we feel everyday and gain a better understanding of how much sheer effort it takes a DM person to make it through each day. I pray that you will win acceptance with the insurance companies and be able to start treatments soon.

    • Theresa Bertuzzi

      31st May 2017 - 11:04 am

      Its so comforting to know that you are out in the world feeling the exact same things I do. We’ve got this!

  4. Kate A

    31st May 2017 - 1:00 pm

    Hi Theresa, I read about your story on the CTV news website. I was wondering if you’ve tried contacting the drug manufacturer about covering any of the cost. It may be worth a shot if you haven’t.

    I sincerely hope for the best for your situation. Hang in there!

  5. Julia Fillion

    31st May 2017 - 1:03 pm

    Theresa I hope that you get the financial support you need for the drugs for these insidious diseases. I too suffer from a variety of symptoms from an autoimmune disease. My children are grown and I can’t imagine how you cope with young children still at home. I understand your disease invisibility. Being ill and outwardly invisible can be frustrating. I too have problems with my balance and have broken my wrist twice (same one) and an ankle by falling. When I have a sling/cane or am in a wheelchair people are considerate because they “see” your illness. The rest of the time people rush past you without realizing that I may fall with the slightest bump. I thought about blogging about my illness but I do not have the sense of humor you display.I am full of resentment and bitterness as there does not seem to be a cure, just drugs to manage symptoms. The side effect of my drugs as well as my illness have diminished the quality of my life and I share your anxiety and depression. Hope things improve in your life and if you have the energy keep fighting. You are not alone.

    • Theresa Bertuzzi

      3rd Jun 2017 - 7:28 pm

      I’m sending you a huge hug!!! I sooo feel your pain. I’ve broken bones as well with my stupid falls. It’s so weird how you can look okay but feel so terrible. Sending you my love. XOX

  6. MACHELLE Milton

    1st Jun 2017 - 1:38 am

    Okay, so I read your blog and I really identify. I live in Canada as well and have Wegener’s Granulomatosis and Lupus as well as a slew of other AI issues. A lot of the friends I have made in the US that have rituxan treatments have applied directly to the manufacturer for financial assistance with this drug. THe company seems to be very willing to help out by reducing the costs for partients. Best of luck with your insurance company, but if they don’t help maybe the pharmaceutical company will.

    • Theresa Bertuzzi

      3rd Jun 2017 - 7:26 pm

      I will be applying for this after we see what our provincial government provides. Fingers crossed. So sad that you are also dealing with a slew of illnesses. It never seems to end. Sigh!!!

  7. Amy

    1st Jun 2017 - 10:11 am

    I am so sorry for your struggle. I live in the U.S. and did not have health insurance when I needed Rituxan. The company that makes it here in the U.S., Genentech has on a couple occasions, given me the drug for free because of my lack of insurance. I am not sure if this is an option for you, but it might help!

    • Theresa Bertuzzi

      3rd Jun 2017 - 7:24 pm

      Thank you so much!!! I am going to apply for a discounted rate. XOX

  8. Leslie

    2nd Jun 2017 - 11:54 am

    Theresa-I admire your strength and keeping your sense of humor! I battle several similar diseases: Raynaud’s, Hashimoto’s thyroid, DM (as part of Antisynthetase syndrome-including the dreaded ILD!), and “mechanic’s hands”…all while trying to work full-time, a single parent, and pretend everything is fine! My insurance initially denied Rituxan treatment but they reversed their decision. I pray that you get the Rituxan very soon and please share your experiences with it. Blessings to you and your family and you make me laugh/smile through the tears!

    • Theresa Bertuzzi

      3rd Jun 2017 - 7:23 pm

      I am so happy that your insurance company reversed their decision. So sad that you are going through all of that and as a single mother too!!!! XOX

  9. Inam

    5th Jun 2017 - 10:59 am

    Hi Theresa,
    I can partially understand the pain you are going through as I myself going through polymyositis. Though u have a lot to deal with than me. I started rituximab an year ago, nd it improved a lot of symptoms, though I still take predisone10mg nd methotrexate25mg subcytinous weekly.
    I hope your insurance has allowed rituximab. Here in Pakistan price of rituximab is less comparatively I.e 3100 USD(1g IV) for a 6 month course. I gues india would have same or less rates. I suggest incase if insurance refusal u can pursue infusion in india/pakistan or someother southasian country where ratws r lower.
    All the best, prayers for ur recovery

    • Theresa Bertuzzi

      13th Jun 2017 - 9:21 pm

      Thank you so much!!! This is so helpful!! I am so glad Rituxan helped you!

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About Me

A hilarious view of life with multiple autoimmune disease and chronic illness. Lupus, Dermatomyositis, Myositis, Alopecia, Raynaud's Syndrome, Sjogren's Disease, Depression & Anxiety. I have it all and have learned to not only accept what come my way but to see the humour in all that life has to offer. If you know someone struggling with chronic illness please refer them to this blog. My hope is to brighten the days of those who need it the most and give hope that there is still a beautiful life to live even if it may be a little bit broken!

Stay Connected

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