tag:blogger.com,1999:blog-6181780691238814823.post3464661742591170628..comments2023-08-28T23:22:07.966+10:00Comments on Living with Bob (Dysautonomia): The Price of HealthMichelle Rogerhttp://www.blogger.com/profile/16472120868084570461noreply@blogger.comBlogger13125tag:blogger.com,1999:blog-6181780691238814823.post-81271002666679630822014-05-15T11:33:09.426+10:002014-05-15T11:33:09.426+10:00Not officially diagnosed, but myself and my younge...Not officially diagnosed, but myself and my youngest have multiple features and doctors always mention our dodgy collagen. Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-67461479748296101762014-05-15T10:52:02.460+10:002014-05-15T10:52:02.460+10:00Thanks, as always!
Just curious, do you have Ehle...Thanks, as always!<br /><br />Just curious, do you have Ehlers Danlosauroraljewelshttps://www.blogger.com/profile/12649239773063794429noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-33201073856259014552014-05-14T17:45:08.013+10:002014-05-14T17:45:08.013+10:00Even with the NHS here in the UK where healthcare ...Even with the NHS here in the UK where healthcare is mostly free (other than dental, although this is free to over 60's, pregnant women and children and the same with opticians) the cost of my prescriptions is expensive. I thankfully qualify for free prescriptions due to limited mobility (if you can't get to the pharmacy yourself to pick your drugs up because you can't walk etc you qualify) however none of my medical team advised me of this. It was through my sister having the same illness that I found out I would qualify. For each medication in the UK the charge is £8.05 which to many people would sound quite cheap my costs would add up to £96.60 add in my husbands medications for asthma, psoriasis and anxiety (caused by me being sick) £48.30 a month. We live on a limited income, we are a lot better off than a lot of people but finding that kind of money every month is a struggle. Plus doctors here can not prescribe six months worth of medications ( so you would only pay £8.05 for each drug issued) they can only prescribe a maximum of 2 months worth. You can buy a prepayment card in the UK which costs about £98 (which is what my husband has done to keep his medication costs down) and you can have as many prescriptions as you need for that £98. However until this year you had to pay the £98 in one go which if you are on a limited income is a lot of money. They have changed it now so that you can pay monthly for that card. However there are a lot of people who don't know about the cards existence and pay the £8.05 charge for each item. The problem is there are schemes to help people but they don't help anyone if they are hidden away (cynical me believes that this is so they don't lose money). People need to realise that being sick is an expensive business the hidden costs are astronomical not including healthcare, home all day you're going to use more gas, electricity, water, food etc than you would do if you were out at work. There is the extra washing (so water and detergent costs), I no longer have a free uniform provided for me, so I spend more money on clothes, although I save on shoes being in a wheelchair now lol! It all adds up and yes the guilt you feel for adding to the financial burden on your family is great. Good piece as always MIchelle.The Myasthenia Kidhttps://www.blogger.com/profile/11584534247370646805noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-74106122446067628252014-03-16T11:11:14.100+11:002014-03-16T11:11:14.100+11:00Jeshyr - Earlier last year when my rehab team enqu...Jeshyr - Earlier last year when my rehab team enquired into it for possible future care needs, it was told that as my diagnosis was vague ie just a severe neurodegenerative autonomic condition, rather than a specific recognised diagnosis eg MSA, I wouldn't qualify for NDIS. I haven't checked again since my diagnosis late last year.Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-17464845563172299852014-03-15T17:29:43.129+11:002014-03-15T17:29:43.129+11:00"I do think NDIS is a great step forward, but..."I do think NDIS is a great step forward, but I do wish it was based on level of disability and need, rather than specific diagnosis" - it IS based on level of disability and need, as well as on whether your disability is permanent or not. I guess they probably use diagnosis for deciding whether it's permanent, but with your diagnosis you'll definitely qualify as far as I know.jeshyrhttps://www.blogger.com/profile/18135667107836142301noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-25493287816985573672014-03-15T14:26:28.776+11:002014-03-15T14:26:28.776+11:00We paid $18,000 USD for our health insurance polic...We paid $18,000 USD for our health insurance policy plus $7,000 in out-of-pocket co-pay and prescription expenses last year for a total of $25,000 of our after-taxes income last year - money that could have gone into a non-existent retirement fund or maybe to pay for our kids college education. We live in the US. This was for doctors to tell me to "stop searching for a diagnosis" and a few CT scans and blood test that came back normal - i.e. further from the dream of a diagnosis than ever. I have vowed that I will not go nor is my family to take me nor am I to be taken by ambulance to any medical facility ever again unless I am unconscious and on death's door. I am done. Done trying to find a doctor that isn't an arrogant, condescending idiot. Done trying to figure out what is going on in my body and what I may be able to do about it. Done giving them my hard earned blood, sweat and tears dollars only to hear them belittle and degrade what's left of my dignity.Anonymoushttps://www.blogger.com/profile/14865620383662549404noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-37202836270169344972013-08-22T22:36:01.892+10:002013-08-22T22:36:01.892+10:00Good Lord, this post deserves both a standing ovat...Good Lord, this post deserves both a standing ovation! There isn't a single point here which I can't wholeheartedly relate, too. We are very, very fortunate to have a percentage of some of my meds covered by the health insurance policy we get via Tony's work, but even with it, the bills stack up might quickly. Just this past June, I started on a new med that's nearly $400 a month, and another a few weeks ago that's close to a hundred. On top of the many existing meds and supplements, the number becomes frighteningly high some months. Countless things are scarified and/or budgeted differently for families like yours and mine, and the many others in our shoes, who aren't exceedingly well off yet have little to no choice but to pay for prescription drugs week after week, month after month, year after year for the rest of time. One can only imagine what the total bill will come if it were to be tallied up at the end of our lives! <br /><br />♥ Jessica Witchcrafted Lifehttps://www.blogger.com/profile/02992822472797191121noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-67383966594047820022013-08-21T04:31:35.905+10:002013-08-21T04:31:35.905+10:00exactly, Michelle... exactly, Michelle... nonnahttp://neuropoet3.wordpress.comnoreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-7789811565056020772013-08-20T23:44:58.201+10:002013-08-20T23:44:58.201+10:00Michelle - you hit a lot of awesome points.
As a d...Michelle - you hit a lot of awesome points.<br />As a dysautonomia/autoimmune/pituitary tumor etc. patient in the U.S. I can really understand the cost issue. We hae that new plan put in place by our so-call president called the Affordable Care Act - which makes care available to those here illegally or those without insurance - BUT deprives those of us WITH private insurance through our spouses' jobs or those who can still work - companies cannot afford to offer people like us that pay $10K+/yr for insurance the same benefits they did last year. So, drugs I need are now not covered. Visits to specialists (and aren't the ALL specialists) are a higher price. Visits are limited to a certain # per year. Sad thing is that this ACA will "help" these other people with these costs, whist those of us that are law-abiding tax-paying citizens get poorer care than those that are scamming the system. (Not sure if those of you in other countries are aware of the amount of fraud that takes place in our welfare systems here in the US - astronomical - "dead" people vote, collect money, see doctors - all on our tax money. All while people like us with rare, strange, hard-to-diagnose issues can't get the medical devices or medications we need, or see the docs that treat our oddities because the money is going to those that are not legitimately supposed to be in the US and are taking advantage of the system. <br />The guilt is horrendous.<br />The toll it takes on relationships and marriages is in itself sickening.<br />These things just make our issues worse, as they stress our bodies even more. <br />All the affirmations and platitudes in the world don't help when you husband is frustrated beyond belief with sheer cost of monthly meds, the number of doctor visits, the fact plans cannot be made because we are always sick...i'm sure you get it.<br />Thanks as always for posting such a powerful piece.<br />You are THE most realistic writer that suffers from this stuff I have read. Seriously. You have a gift.CapturedByLorihttps://www.blogger.com/profile/10047372246119693968noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-51787636716768810012013-08-20T19:18:08.735+10:002013-08-20T19:18:08.735+10:00I guess I have the added problem that, as my neuro...I guess I have the added problem that, as my neurologist points out, I'm one of a handful of her patients who will likely never have a clear diagnosis, so it's not like I'll have a 'label' to put on the paper work. They can tell me all the things that are wrong, that it is progressing and that I am increasingly disabled, that they think it's genetic, but I don't fit anywhere. For people like myself there is no provision in things like the current NDIS or any other programs. Care for cases like myself is piecemeal at best and unless you can self-advocate or have someone to advocate on your behalf you are pretty screwed.<br /><br />I do think NDIS is a great step forward, but I do wish it was based on level of disability and need, rather than specific diagnosis, although logic me knows there has to be a cut off somewhere. I already require a wheelchair or a cane if a short distance. It's only going to get worse but I wont be covered unless there is a change.Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-32152295931695995592013-08-20T18:50:47.751+10:002013-08-20T18:50:47.751+10:00Actually they are caught in trap with this one. E...Actually they are caught in trap with this one. Everyone has assumed, it seems rightly, that MS is included, as it should be. And I think MND, as well as few others which are well known. Clearly chronic disabling illnesses, which leaves a headache for those making decisions. <br /><br />And the whole issue of a clever lobby group, or even just a clever doctor who can work the system, becomes so important. Sadly I don't think the yellow wiggle will be enough to get you to this particular line. They are already worrying at their generosity.<br /><br />I won't go on, but it is an issue which means a lot to me. Anonymoushttps://www.blogger.com/profile/05283205020296581551noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-66715407335508101992013-08-20T16:20:41.817+10:002013-08-20T16:20:41.817+10:00Thanks Bea. You're right we do have a feeling ...Thanks Bea. You're right we do have a feeling here that we are doing it so well. But as you say if you don't have a big/well known disorder with a great lobby group behind it, you just fall through the cracks. <br /><br />The last I heard chronic conditions like mine wouldn't be covered under NDIS/Disability Care, despite the fact it leaves me disabled. But there seems to be a lot of confusion. <br /><br />I do hate that so much depends on how well you can negotiate through the system. Which also requires non-existent energy, both physical and mental. Michelle Rogerhttps://www.blogger.com/profile/16472120868084570461noreply@blogger.comtag:blogger.com,1999:blog-6181780691238814823.post-84453228628476685972013-08-20T16:04:28.497+10:002013-08-20T16:04:28.497+10:00Good on you Michelle. There is a comfy cosy feeli...Good on you Michelle. There is a comfy cosy feeling<br />amongst those who are healthy that we do it okay in Australia.<br /><br />But things are frightening and cruel for the chronically ill. Its a little easier if you have the right kind of illness, one that is well known, and which has had a good lobby group for a long time. But those of us who are mysteries are not so much fun, for the medicos or the general population.<br /><br />And being not so very well, we mostly don't have strength for the kind of political noise we need to make. As we are talking Australia here, I wonder whether you know e.g. whether your illness would be covered by the new DisabilityCare. I have heard there is a trend to exclude illnesses as these are not real disabilities. [sigh]Anonymoushttps://www.blogger.com/profile/05283205020296581551noreply@blogger.com