I have a confession to make. The first 23 years and 322 days of my life I was the poster boy for what’s wrong with my generation… politically. I happily (and consciously, mind you) bunched myself in with the pathetically apathetic group of nonvoting twentysomethings. I viewed politics as nothing more than semantics. "Why should I vote? It’s not like any of this stuff really affects me directly." I want to take this opportunity to apologize to my country, because I took nearly six years of my voting privilege for granted.
It’s disturbing that it took my becoming a quadriplegic for me to recognize the err of my ways, yet somehow fitting. I can’t help but recognize the irony. The system I once said I was beyond is now the system I rely upon. And sadly for me, my lack of prior participation leaves me struggling with a system which doesn’t seem to be on my side. As if I don’t have enough on my plate, I find myself fighting tooth and nail for things I should not have to. The most obvious struggle to date has been that over equipment.
As I have before, I will use the wheelchair industry as an example. Take one look at me, and it is obvious that I would need a power wheelchair in order to lead anything that resembles an independent life. Apparently, to the state, being a quadriplegic is not reason enough. In order for the state to provide me with a power wheelchair, they need letters of justification from both a physical therapist and a physician detailing the reason I need each and every piece of equipment on the chair. Does the fact that I need footrests really need to be argued? Apparently so.
After every justification letter has been assembled, it can finally be submitted to the state. Right off, the state takes one month to consider things. You are warned ahead of hand that most all submissions are turned down the first time. And as expected, my chair was turned down after the first 30 days. Reasoning? They needed further justification that I needed head controls instead of the standard (a.k.a. cheaper) hand controls. Seriously? The fact that I can do nothing more than shrug isn’t a good reason? Guess not. It took almost a year of monthly rejections for the state to finally approve my wheelchair. Fortunately for me, some wheelchair companies will give you a loaner for the time being. In the big picture, wheelchairs only give independence. Some equipment is necessary for overall health.
One of the biggest causes of compromised health in quadriplegics and paraplegics are skin issues. Pressure ulcers can lead to problems ranging from further loss of independence, to infection, and ultimately amputation in severe cases. Because of decreased mobility, those of us who are paralyzed have to be extra careful with positioning. Having an air mattress for your hospital bed greatly reduces the risk of skin breakdown. This one piece of equipment costs around a few thousand dollars. This is an item the state refuses to pay for. They will rent one for you, in the event that you get a pressure sore (inevitable on a normal hospital bed), and then take it away once you are healed.
Financially alone, this makes absolutely no sense. Instead of shelling out a few thousand dollars for a bed that virtually prevents skin breakdown, they will rent it for me indefinitely only to take it away until I get a pressure sore again in a few months. They would rather pay tens of thousands of dollars on countless reconstructive surgeries and amputations than buy a relatively cheap piece of equipment. They will pay thousands of dollars a day for you to stay in the hospital after these procedures, but refuse to take actions that would prevent that pain and suffering altogether. I fail to find the logic.
Health care in general has become so compartmentalized it should no longer claim the name. Maybe we should rename it "health obligation." Because the industry is overridden with redundant stipulations and regulations, it has become so sterile and callous that the compassionate element is no longer apparent. Doctors don’t care who you are, they just want to remedy the problem and walk away. This in turn leaves the nursing staff (unsung heroes in my eyes) with more on their plate than necessary. Lately, rehab facilities have forgotten that rehab is short for rehabilitation. They focus on getting a patient’s body ready to leave the hospital, but not their mind. Personally, I left the hospital completely unprepared for life as a quadriplegic. But I could breathe on my own, so their mission was completed. Therapists are just not given enough time with you to accomplish much.
Because of the system, each institution only does their part, and washes their hands of you when the job is done. The lines of jurisdiction between each sect have become comparable to the Berlin Wall. I came face-to-face with that fact upon my discharge from the hospital. The therapists from the hospital that were in charge of obtaining my equipment for home (wheelchair, hospital bed, etc.) were forced to hand me over to home health officials with a big fat "Here you go… have fun," taking things back to square one. Because hospital therapists are not allowed to deal with home health too much, you fall into the hands of people left completely in the dark. Were they able to work together, even somewhat, the transition from hospital to home would not be such a formidable and frightening task.
Now I understand that it’s difficult for legislators and lawmakers to understand my plight, considering most of them have never been in direct need of the benefits over which they preside. At the risk of sounding somewhat sadistic, I almost hope some of these men and women see someone close to them end up in a position of need like mine. If that’s the only way that the repercussions of the stances they take can be felt, then maybe it’s necessary. Because as it stands now, the lives of state dependent quadriplegics are unnecessarily difficult due to a system without perspective that works against them.
So I guess that leaves it to us to make change. Get informed, make your voice heard. And to those of you who are like I was two years ago, I beg you to reconsider your views. While you may not think things pertain to you at the moment, you never know what you or your loved ones could need tomorrow.
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I can relate to your problems, I am a T-6 complete para. I have to be disabled 25 months to get medicare. I was quote "one of the lucky ones injured at work. I live in the state of Washington, workers comp. ( L&I) told me we are just like anyother insurance company, we don\’t care about you or the quality of your life. When I was released from the hospital after my accident I had to go to a nursing home because our house was not handicap accessible, we wanted them to send us to a motel it would have saved them over $2,000.00 a month, they wouldn\’t do it because it had never been done. Also in the state of Washington L&I protects the employer giving you no legal recourse against the company you were working for. I am also going thru the same problem with an airbed. We definitely have a screwed up medical system and every body that has to use it has more horror stories than they can tell.
Hi Kenny,This relates mainly on the budget of the state and I do hope that they prioritize also the situation of its people who needs its immediate concern. I know by this medium, it will reach the proper authority and will take serious consideration of your case. God Bless.
I work and live in Texas so I can certainly testify to the disaster the helath care system has become. I work with homeless women who are mentally ill and drug addicts. It is a sad state of affairs.Cheryl
Hi Kenny, I came across your blog at work and was blown away by your spirit and character. You must have some awsome parents to have raised such and equally awsome son. I had a sister with spina bifida and know all too well the frustrations you desribe with the wheelchair, the air bed- EVERYTHING. It must be the same everywhere and that just really pisses me off. You are someone I would like to know, your spirit radiates through from the words you write and I feel like everyone that knows you is very lucky. You are really amazing in a way that is hard to explain and I look forward to reading all that you put on your site. Take care and keep up everything that you are doing.
Oh My! Now that really makes me angry! YOu should not be denied a power chair. Yet, I happen to know how difficult it can be to obtain one. And they are so very expensive! My husband has found a pre-owned one for me. We purchased it form a gentelman who sells these on eBAy. Right now mine is still in Boise Idaho. We\’ve been tracking FedEx. My need for one is not the same as yours. I am a polio survivor coping with Post Polio Syndrome. I thank God for a good mind, supportive famiy and that I was able to help raise our three sons. Have you yet visited Benji Adams website? If not, I hope you will. He is most encouraging. He also has bad difficulty obtaining a new power chair.http://www.benjii.us/benjii/experiment-3.htmI\’m glad to have met you here in the spaces. YOu write well. Keep writing and sharing.
I\’m writing to give you my support and solidarity in your cause, you got to keep fighting for your cause, health care in the states is at a rapid decline, they would rather spend money on a war benefiting the rich then spend it on cancer research, poverty and health care causes.
Well Brother I can Feel Your pain. I had a head injury in 1985. I spent about a year and a half in a wheelchair while I learned to walk and talk and feed myself and wipe my ass again. Of course the Feds and state helped me get that wheelchair (a manual push). I got better and with the help of braces on my left leg and arm and a polio cane have been walking for all these years. Well now some thing has gone wrong in my brain and I once again find myself unable to control my left side. After at least 10 trips to the ER for injurys from falling, The doctors see a need for me to have a wheelchair for me to use in my home( I live by myself). Medicare and Medicaid says they have already purched my wheelchair for this use. Thats right the one I had in 1986-87. Sorry I didn\’t realize I would need it again later, as it looks more like Evil Kenevils bike after a jump that it does a wheelchair. I\’ve only been turned down for a powerchair 3 times in 6 months now, so life goes on as I crawl from room to room in my home. Until I read your blog I felt sorry for my stupid ass, now I thank GOD I can crawl. Thank you for opening my eyes Kenny. Your Friend and Brother. David
Hey, Kenny I have CP, and I consider myself extremely lucky that I have physical freedom, but I know how screwy the state can be for someone with a severe disability. My brother has been on dialysis for over 3 years, (he\’s only 41), and will probably within the next 4 years without a kidney transplant. The system sucks!Anyway, now that I got that off my chest, I thought I would pass along the names of 2 websites to you.www.thenthdegree.com and http://www.disabledandproud.com, These sites, plus a site called the ragged edge, have all sorts of stuff geared to the "differently abled", as I like to be referred to. By the way, I turn 50 this year and have never known what it\’s like to be so-called normal. Maybe one day you can tell me, ok?lynneann123
Hey Kenny, i found you through Callie\’s links left all over the web, bless her. I know of what you speak and i know there is more a problem in the States then here in Canada. Here we use our community services to help us out, i would imagine you have exhausted all those resources? Like Rotary clubs or our Legions for vetarans or Masons, whatever you have in your area? I hope something can be done. My best thoughts are with you, and this day you are heard. Good luck, and please keep writing. You are amazing. Take good care of that wonderful heart. Hugs,~Silent
Have not been to your blog before, found it through a comment left on mine. My husband\’s uncle has been in a wheel chair since 1985 when the coal mine he was working in caved him. He is an amazing person as well. Thank you for sharing your life and your frustrations. I am glad I came here today.
Hello, I was just mopping around hanging my head in disbelief of what I\’m going through with my insurance company when I came across your story, someone slap me cause I\’m so damn lucky to have only one leg aputated and nerve damage in the other that appears will heal. I will do my best to remain in steadfast joy and enjoy each schooch across the floor as I\’m blessed with arms that work. Much gratitude to you for raising my awareness above myself and these four walls. I do not know where my new path will lead but I hope that I can make a difference in this world by keeping a positive attiude and treating all of you as true brothers and sisters. World Peace is Possible Vivek
I just spent the greater portion of this past hour reading your blog. You are a fantastic writer and you amaze me.I was feeling sorry for myself (because my mom is terminally ill and things look very bleak, I broke up with my boyfriend, I have a dirty roommate for the rest of the summer…etc.) and your positive outlook on life really made me snap back to reality at how fortunate I am.You should write a book. I\’d buy it.
Bureaucracy is strangling this country. And yet, socialized medicine may not be the best solution. In 1991 (or \’92) 43% of the open heart surgeries at the Mayo Clinic in Rochester, MN, were performed on Canadian Nationals. This information was delivered at a seminar I attended in 1993 or \’94. Many of these Canadians said they came to the United States because health care was so poor in Canada (of course it was free, because tax dollars paid for it). Unfortunately, Canada was forced to close wings of hospitals and lay off staff in the fourth quarter for several years because their socialized medical system was broke. Doctors were fleeing the country. Cynics claim it was because of greed. I interviewed one (journalism is my background) who said it was because he was not allowed to practice his specialty. President Clinton, who tried to push this type of program on us, said most doctors would have to give up their specialties and become general practitioners (if his plan was adopted). This destroys incentive. I certainly don\’t want a doctor who doesn\’t care about his profession treating me. The system is a mess. The question is: How do we fix it? Take care, brother. I hope and pray somebody injects a little common sense into the potical and medical arenas.
We have a good, used power chair with everything for a high level quad. Jazzy 1121 with tilt, arm rests, head controls, etc…. Are you using dragon naturally speaking? We found it to be the best. We have had a lot of experience with adaptations. Email if interested. No charge. email@example.com
Normally I shy away from stories of people who have been injured and many of the sad stories in general. I try to pretend these things don\’t happen and will go away. Selfishly closing my eyes and mind to other peoples problems. I read your story and was touched by your fight to live a normal life. Of course "Normal" is whatever you believe it to be. You have a great deal of courage and have at least opened the eyes of this one selfish person. My prayers are with you.
Well, first of all I have to congratulate you for your fight to live a so-called normal life…I always think that there is something wrong with me… (Sometimes I think I\’m ugly, other times I think I\’m not funny… You know… Adolescence stuff…) But, after reading your story I almost feel bad about myself for being so selfish for not thinking that there are people who have bigger problems then my lack of self esteem…This said, I just want to wish you the best of luck to you and also to all of you that commented this and are in similar conditions.This is kinda of a fiction phrase but I say it not just to say, but because I mean it: "May the force be with all of you"Best wishes to all of you, DanyP.S.:I read on one of your comments that you will get the chair you needed and that\’s really nice. It\’s good to know that there are still good people in this world…
I too was the victim of a life changing incident. In September of 2002 I suffered multiple injuries in an automobile accident. I consider myself lucky however that after weeks in two different hospitals, two months in a nursing home, six months in a wheelchair and several followup operations along with physical therapy sessions which still continue I am able to walk and lead a relatively normal life at this point. Having been through this experience, I agree to your assessment of the system. I believe the corporate mindset in this country is very much to blame. The doctors are as profit minded as the oil companies are. They will do their surgery in an effort to improve your abilities and comfort level but when the miracle doesn\’t happen afterward they prescribe potent narcotics to convince a patient that things are better. I have been prescribed many different kinds of pain killers and muscle relaxers including Methadone and Oxycontin.In light of this I was never advised of the side effects or the long term dependency involved in taking these drugs. When I realized myself what these side effects were doing to my well being I went "cold turkey" and quit taking these medications even though the pain is barely tolerable at times. In retrospect I remember that the friendliest and best dressed " regulars" at the nursing home and the hospitals were the drug company representatives ( if you ask for a pen or a piece of paper to write on in the hospital a drug company logo is prominently displayed on each ). I\’m starting to ramble here, and I have so much more to say about our expieriences, but I will close now and say thank you Kenny for giving me an outlet to vent my feelings. Keep it up buddy, I\’m sure I\’ll be back soon to continue my ramble.
Hi Kenny. My name is Mary Ann. I am 18 and have a 21 year old brother who has been a quadriplegic since birth. He has absolutely no mental disability. And I find that this leads to a life much more complicated. I\’m in a family of 5 and I\’m the youngest. I am going to leave for college soon and I will be the 4th that John has had to watch up and leave the house. I know he feels stuck and I know he has not found meaning in his life as of yet. I just hate leaving him. I have tried talking to him many times, but I can\’t get deep enough into the conversation before he begins to cry and won\’t say anything else. He is such a great guy with a great heart and a great mind. I know that he could do anything he put his mind too, but for some reason I think he\’s scared to try. The things that he has come up with to do are not possible and it just breaks my heart. For example, he loves sports and wants to be an announcer — unfortunatley, he cannot speak fast enough for it. Another thing that breaks my heart is that like all of us, he wants companionship. We live in such a small town, no girls come around the house and no girl will have an open mind to it anyway. If they only knew how amazing he is! I just think it would be great if you and John could write back and forth via e mail…if you are willing. I feel like your guidance and support could really help him find his way as you have found yours. If you are at all interested please e mail me at firstname.lastname@example.org. If not, God bless and I wish the best for you. You have already touched so many people — it\’s obvious that this is one of your callings in life.
Unbelievable! As I read your story I could not believe how right on the money you are. My uncle who has been a paraplegic for over 20 yrs is lying in a hospital bed as I write this, for the second time in the past 2 months for the pressure sores you talked about. It is like pulling teeth to get the help he needs while hospitalized. Things as small as placing his meal tray by the door. HE CANNOT GET UP AND GET THAT!! I get so angry that we have to explain to THEM the special needs of a paralized person. The system is so messed up. I hope people read this and realize what is happening. Thank you for getting it out there. Best Wishes to you. I really enjoyed your blog, you sound like a great guy!
Hang in there Kenny! . You are a great writer! I am one of many that can truly sympathize with you. I also had a life changing accident 25 years ago in a diving accident. I don\’t know how I made it this long without going crazy. I think I have about as much movement as you,(c-4,5) and went through the same mental anguish as anyone could possibly tolerate. I feel especially bad for women, they seem to have a few more problems than men and i don\’t know how they deal with it. I found myself in financial distress more than once, in the mid \’80s when drugs were prevalent,( not that society has changed much since) and I definitely did not have the attitude or fortitude that you have. In short, I ended up getting arrested twice for selling drugs, even though I got away with it for more than 10 years. I\’m not using my injury as an excuse, although I worked very hard consistently before my injury without drugs. Sometimes you have to do what you have to do even if it means risking everything. At the time I didn\’t care about living or anything of any importance. I finally learned the value of family. I learned since then that being a good person is way more important than having money. I guess we all learn from our mistakes and i made plenty. . Have you tried a relatively inexpensive waterbed? I\’ve had very few skin problems since I went from an air mattress to a semi wave waterbed. Good luck with your electric wheelchair, try hard to keep good help, and keep that great attitude! You\’re already miles ahead of me. Take care of yourself. . Italamer72
i know how you feel! i have a chronic intestinal illness that has ravaged my body for 13 years now. it took me SO DAMN LONG just to get health insurance! no matter how much info you give them (letters from doctors, even photos of what is wrong!) they still think your kidding them and that you will get better. seems like they dont understand the concept of people getting sick and staying sick for the rest of there life.people take the smallest things for advantage. just getting up every day is a blessing. seems like me and you understand that 🙂
Hi Kenny, I certainly know what you are saying is true. I have worked in health care for over 20 years and have taken care of many people in your situation. I have watched them waste away and give up all hope simply because they could not get the help and assistance they needed from the "system". I admire you for your courage, please keep this going so others might find it and know they are not alone. (BTW got so discouraged with the "system" I left health care 2 months ago, was so discouraged to see people going through these things while the ones who make the rules run around like they were God,)
Hey Kenny,Reading your blog picqued my curiosity: what level C are you, and what state do you reside in? My son has been a quad (courtesy of a drunk driver) for 18 years. He was 18 when his life took a major course change. Sure, there\’s eternal paperwork and doctor visits, but he\’s never had as much trouble as you have getting equipment.I was astounded when I read your post. He\’s never had the first bedsore in 18 years, but we\’ve dealt with crud like a broken femur after his chair wheel encountered faulty sidewalk which flipped him onto the street.I\’m fortunate he has a "Come on you muth******s and I\’ll take you on!" attitude where red tape is involved. We\’re in Florida, so I\’m curious about your locale where the state is so backwards. He\’s on his 4th or 5th electric chair now, so we\’re well acquainted with "the system".Chin up kiddo. Stay tough and you\’ll do well.
Kenny,Good luck in your quest for a power wheelchair. Try not to spend too much time expecting the governmental bureaucracies to think logically; you\’ll hurt your head banging it against the wall. I work with adults with developmental disabilities and have encountered problems similar to your air mattress and chair stories. My state budget is in terrible disarray and part of that has to be the result of the hamster wheel that is their modus operandi.I\’m glad that you recognize that you must get involved politically to start changing the system. I recommend that you get to know your state and federal senators and representatives. Put a face to the issue for them so they can see how moronic it is for you to request a chair monthly and be denied regularly before you eventually get the chair. Ask them to push legislation to make it easier for people with disabilities to obtain needed services and break down obstacles to their mental health and physical well being that occurs every time you have an interruption in your continuity of care (e.g. the therapists at the hospital and home health not being able/willing to work together for your benefit). Keep at them and ask everyone you know to contact them to fight for improving the system.My agency works closely with our state senator and representative to fight for community service providers to receive cost of living raises. They had voted agains them until we inundated them with letters and postcards illustrating our plight. Now, they are strong advocates and often contact us to see what our needs are when the budget is being considered.I admire your spirit because it would be so easy to be mired in self-pity.I don\’t have a disability and thank God everyday for the precious gifts I have. Because I have worked with people with disabilities for 14 years, I know it takes but one bad thing for my world to change irrevocably.I leave you with these words that have inspired me:"The first great gift we can bestow on others is a good example."—Thomas Morell"There can be no progress if people have no faith in tomorrow."—John Fitzgerald Kennedy"The best of healers is good cheer."—Pindar "You have to know how to accept rejection and reject acceptance."—Ray Bradbury“Diversity raises the intelligence of groups.”—Nancy KlineBest wishes.
Unless you actually believe Medicare & Medicaid services will Increase in the future, get used to it. This is by far the most familiar chord to be struck in america\’s handicapped society. Having been a quad for 23 years I know what you mean. Your best bet really is to find a good Occupational Therapist. I\’m sure you\’ve worked with your share, but i mean on an outpatient basis. These people, and good Social (Case) workers (hard to find but priceless when you find a good one) can do amazing amounts of legwork for you, and do it fairly quick, as they generally have connections. Nfortunately for us quads, some have taken it upon themselves to abuse the system to their benefit. Some wheelchair or \’scooter\’ companies have been guilty of this; they promise a power wheelhair for nearly anyone on Medicaid (or used to) and because of that, it is extremely difficult to \’prove you\’re a quad\’, and i know what you mean "if they cant tell by LOOKING…"- yeah no joke but it\’s happned to me plenty of times too.Thanks agaib for writing. You\’re a great voice for us quads. take care.
I hope you\’re not a Veteran going to the VA because that would really suck! I work at a VA and all the mangement there cares about is looking good and getting their bonuses. They they don\’t care about the vets or the employees.It\’s funny that all the people that commit fraud tend to get things easy but someone who really needs things have to go through so much bullshit on top of the bullshit they\’re putting up with already. I know the thing about buying a air mattress is sort of like when health insurance wouldn\’t pay for birth control pills but they would pay for child birth and I\’m sure that\’s much more expensive than birth control pills. Since Viagra came out, all of the sudden they pay for birth control because they pay for Viagra.
Kenny,Though it took a major, life-changing event to help you see the importance of political knowledge, if not political activity, it is great that you are providing specific details of WHY it is so important. Many young people feel they are invincible, untouchable, and mostly, unaffected.Your comments might help some see that there is a need for them to help lead change.Congratulations on all of the recognition from MSN. Your efforts are worth special note as they are extraordinary efforts.Tom
Hi Kenny –
Thank you for this post. I\’ve tried explaining this concept to a few of my friends (one is even a psychologist) and noone seems to understand what I am saying. I don\’t have a physical disability, but I\’ve suffered from depression for years, depression that has resulted in somatic problems, specifically neck and back pain. The psychiatrists just writes out the scripts, the chiropractors just snap your back, the spiritual aspect isnt even mentioned, let alone covered by health insurance. After 10 years of "this" or "that" medication, I stormed into my shrinks office and told her "look, i do not feel better, it\’s something else, i just dont know what." she responded with an apologetic reference to her apparent inability to help and that she would not be offended if i found another doctor. i said "no way, you\’re the professional, figure it out but ill be damned if im starting this process over again." finally, after a battery of tests and a serendipitous exprerience my counselor, they discovered it was ADD. i even signed consent forms for these people to communicate and it still took 10 years. believe me, i understand how frustrating the compartmentalizing can be. sometimes i wonder if i hadnt been so pushy, she might still be telling me i enjoy my misery and thats why i dont feel better. but on a lighter note, i did vote for the first time the last election and have become obsessed with politics. i was reading the comments to your post and noticed how someone mentioned action. it left me feeling like i might need to take it to the next step and start contacting my state reps, or just getting more involved. thank you for this blog. you\’ve amazed me with your positive attitude and willingness to see how some of lifes blessings are well disguised. as a friend of mine said to me the other day, "tanya, you been trusted with the gift of suffering, so you can reach others." it sounds like you have too and have well stepped up to the plate.
be well and please keep writing.
StephanieD sent me your way. Great blog. Your attitude is amazing. My own minor disability has opened my eyes to assessibility issues which I getting very tired of. Vote? First let\’s get this stuff on the ballots! To read a few of my rants on disability parking, check out my blog http://360.yahoo.com/tabithadarling
Looking forward to readng more of your writing.
You\’re quite right. Isn\’t it amazing that a disabled person has to fight for each and every little thing. Yet, someone in the \’public eye\’ would immediately be catered for. Not that I would dare to deny them their rights, should they become in need but it sets the stage for a real difference in perspective! I have to use a wheelchair when I\’m out for the simple reason of crossing a road. It would take me far too long to try and do that without the chair and you don\’t get the time I\’d need on the automatic crossing, even with the pedestrian lights! It\’s safer for me to use the chair than try and struggle with sticks (canes) or a walker. I was absolutely dunbfounded to read of a disabled person\’s difficulties in your country, Kenny. I thought it was bad enough here but what I\’ve read tonight takes the absolute biscuit. Your penultimate paragraph, sadly, makes too much sense. Sense that a well person could never begin to understand.As for voting, if anyone ever bothers to canvass in my area, I want to know why I haven\’t even got the right to know why I can\’t walk and will damned well ask them what they\’re going to do about it, should the canvassers ever get to Government. I continually get the feeling it\’s because I\’m a blight on the economy. I dare someone in Government, or otherwise, to prove me wrong. It makes me and my Mum and Husband extremely furious.