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A busy week this week full of protests and International Women’s Day and politicians that seem to not know what it means to be a compassionate human being. If only we could ban them from swimming in the gene pool. This week is also MS Awareness Week.
I used to post about it annually but I haven’t for the last few years, mainly because Bookman continues to do so well. Some of you may know that Bookman was diagnosed with Multiple Sclerosis in 2005. MS is a chronic disease with no cure. The body’s immune system attacks the protective myelin around nerves in the brain and spine. This causes short circuits that can lead to all sorts of problems from vision to mobility and, well pretty much anything since the nervous system is one of the body’s main communication systems.
Bookman continues to do really well. He struggles with fatigue and several other symptoms but he remains strong and completely mobile. The introduction of oral disease modifying medication a few years ago was a small miracle. The scars Bookman had from daily injections have faded, though they have not disappeared. Not having to do injections anymore is one reason Bookman finally decided to start having work done on a new tattoo. It is an extensive one on his left arm — tree bark — and will eventually cover wrist to upper arm.
Bookman’s in progress tattoo
Even though he is doing well, Bookman’s hearing is gradually being affected by his MS. He noticed some hearing loss a couple years ago and was tested and confirmed. It wasn’t bad enough to warrant any action. Recently he noticed he was having a harder time hearing people and saying, what? a lot. So he saw his audiologist for another test. His hearing loss has advanced enough that the doctor wrote a prescription for hearing aids. Unfortunately, hearing aids are not covered by health insurance. They will cost $4,000-$6,000. The state has a grant program to help pay part of the cost. Bookman is in the process of applying, so cross your fingers!
As those of you who live in the United States know, the Republicans in Congress are out to decimate the Affordable Care Act. Their new proposal for replacing the ACA is a pile of poo. Bookman is lucky to have an employer that offers a good healthcare plan, but lots of people with MS are not so lucky. That oral medication he’s on? It costs over $1,000 for a one month supply. Even with Bookman’s good insurance he would be paying an annual deductible of several hundred dollars plus a monthly co-pay of close to $100 if not for co-pay assistance offered by the very drug company that sets the exorbitant cost of the medication. It’s a travesty. But this is only one of the medications Bookman takes. He also has several others to help alleviate the symptoms caused by MS. Thankfully, these are not as costly but he still has to pay co-pays on them which adds up over the course of a year.
Now some might say that since Bookman has insurance coverage through work he doesn’t have to worry about what Congress does to the ACA. Wrong. If the new plan gets approved, should for some reason he have a lapse in insurance, a new plan can deny him the important coverage he needs as well as charge him a whole lot of money for whatever coverage they are willing to provide. There is also no way to predict what employers might do to coverage they make available to employees. And, should Bookman ever need to work less and his employer decides to not provide health coverage because of it, well, let’s just say if I let my imagination go the results are anxiety-producing.
It is also my understanding that the new plan removes out of pocket expense caps as well as raises the amount insurance companies can charge older people and people with greater healthcare needs. But even if it didn’t affect Bookman at all, there are still a whole bunch of other people out there who have it worse and will have it even more worse if the new law passes.
McSweeney’s had a funny/not funny list in February that kind of sums it all up: Patreon Perks for When I Lose My Insurance due to MS.
If you are hazy about what MS is, visit the MS Society, and/or watch this nifty informational video
One thing MS has taught me and Bookman and reminds us about every day is to appreciate what we have and the things we can do — seeing and hearing, walking and biking, cooking and gardening, because, as Jane Kenyon says, one day it will be otherwise
We have a niece who was just diagnosed with MS. The issue of health care accessibility in this country is a travesty, and I am so tired of it. I simply do not understand the Republican stance on this, or how the legislative branch can justify the terribly unproductive contentiousness and vindictiveness that never seems to end.
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Valorie, I hope your niece is doing well and is fortunate to have a good neurologist! I am in total agreement with you regarding health care!
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She is brave, and just learning to deal with the medication. She lives in Portland so we don’t see her much, but they seem to be happy with her doctors. They are also religiously following a special diet – gluten free, I think.
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It’s a difficult adjustment in so many ways. I am glad she has good doctors. All the best to her!
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The results of the new health care proposal are indeed anxiety-producing, and I’m phoning my congressmen daily. My representatives are all male, and we’re talking about a disease that affects males here, but the lack of coverage for women is even scarier. In a fit of synchronicity, I wrote about this same thing on my own blog last night. I didn’t mention health care specifically, but it’s definitely one of the things that worries me enough to wake me up in the early hours.
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Jeanne, all of my reps are democrats who voted for the ACA and they are all pushing back against the repeal and replace so for that I am grateful. Women’s health care will get ripped to shreds if this new plan gets passed, it makes so very angry.
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The poem at the end!! Otherwise.
Love ❤️ it !!!
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Glad you liked the poem Helen!
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Thanks for highlighting this disease, and my best wishes to Bookman. Here in the UK we moan about the National Health Service, but at least everyone gets treated. How is it that the wealthiest country in the world cannot afford to provide for this basic human need that all European countries provide? I hope that you and others will keep on at the politicians to check the various schemes that operate in other countries.
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Thanks Michelle Ann! The thing is that healthcare is big business in this country, there are too many corporations looking to make money off of sick people and because they have money and power they buy the politicians who somehow think that “the market” will solve all out health woes. The ACA is not perfect but it was certainly a move in the right direction and now those in power are trying to take it away and make things even worse than before the ACA.
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Thanks for raising my awareness and I’m right there with you as far as worrying about ACA and whatever’s supposed to replace it.
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wanderwolf, and thank you! I was talking with someone yesterday who is a visiting scholar from Austria about healthcare and she made me want to move to Austria. I had better start working on my German and brush up on my yodeling 😉
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Ha ha, ja! Though yodeling will make you look like someone from the mountains and unused to city life 😉
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I would already stick out because I have the worst accent ever so why not add yodeling. And polka dancing. I do enjoy a good polka dance. I don’t mind being the goofy American 😀
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There’s no problem with that 🙂
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The more I hear about the US and the health insurance problems the more I think that you won that war for your independence – but lost the peace. Our NHS is really wonderful compared with what you have. I hope everything will be OK for Bookman. My m-i-l had MS in the days when there was absolutely nothing they could do about it, but the research going on now is very encouraging I think.
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pining, yeah it is a real mess that’s for sure. Capitalism does not belong in healthcare i my opinion but it seems the politicians all believe that the market and competition between insurance companies and care providers will solve all our problems. In reality it will be a race to see who can provide the least amount of service while making the most money doing it. I am sorry for your MiL. Bookman was lucky in regards to medication when he was diagnosed there were three to choose from which is a good thing because he was allergic to two of them! Research is encouraging especially with stem cell and gene therapy, also experiments in mircrobes! Really interesting and exciting.
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It’s good to hear Bookman is in good health, though scary to think of the hearing loss. I hope he is able to be fitted for hearing aids so it won’t be an issue. It is definitely sobering to think of the challenges he faces and makes you appreciate all the things that are good. And a good reminder to us all, so thank you for posting this. As for the healthcare situation–well, it is frightening and having insurance through an employer (now, but the new plans mean companies won’t be required anymore to offer it……) is not any guarantee for all the other things associated with being healthy. When Trump said not passing this plan will be a ‘bloodbath’–I think that is going to be after the Republicans dismantle what we have. WE are going to be in a bloodbath of mess I am sure they will create.
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Danielle, thanks! The scariest thing about MS is that there is no common progression of the disease, it is different for everyone. So Bookman may never have mobility problems or it might be a long and gradual thing or it could be as sudden as waking up in the morning and finding a leg has gone completely numb and he can’t move it. One or way or another he’ll get hearing aids even if we have to finance them and be careful with our budget for a while. I am hoping since even the republicans can’t agree on a new healthcare law that they won’t be able to pass anything. That is probably too optimistic but I have to hold on to something!
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I keep fingers crossed so that Bookman gets the grant! The situation in the US with healthcare is shameful. In France hearing aids are maximum of $2000 (and most are way cheaper since the population is ageing and more and more need it), partially reimbursed by national healthcare ($200 flat rate) and your company’s health plan (which vary a lot).
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Thanks smithereens! US healthcare is shameful and the really bad thing is that there are so many people who want to keep it that way because of money and religion and plain old politics. Sigh.
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Thank you for the update and for sharing the personal story behind the headlines: I think that’s so important. Understanding the cost of these aids certainly puts things into a different kind of perspective. It makes me anxious, having to rely on technology to assist/replace a failing sense, especially given the state of the healthcare systems in various countries, and wonder whether lip-reading lessons while still having use of one’s hearing would be an option from a supplementary perspective! (Only half-kidding.)
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buried, I’m not so worried about relying on technologies since I already wear glasses for reading and Bookman has been wearing glasses since he was a kid. It’s the making room in the budget to pay for those technologies that is hard especially when you don’t expect to have to use them. Lip reading might help a bit but a quick look reveals classes are aimed towards deaf children which would make it kind of weird for a 50-year-old man. There must be something though, might just take a bit more digging.
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Best wishes to Bookman; I too shall cross my fingers for him getting his grant. I really am shocked beyond measure about what may be done to your ACA, it is disgraceful. So many people are so worried and frightened for the future.
Here in Belgium we also have an insurance system for healthcare but the difference is enormous. The insurance companies are not-for-profit, which completely changes the whole system. Everyone is covered, whether they have a job or not. You pay according to your income. You don’t pay a higher premium if you have a pre-existing condition. Like any system, it isn’t perfect, but it works well generally. I suppose it would take a big cultural change in some parts of the US to remove the profit element from healthcare insurance and to change this ‘why should I subsidise other people’ mentality which some seem to have. But I really hope that change happens.
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Thanks Helen! I think that most of the medical industry — that I can even call it an industry! — is run for profit which I am convinced is a huge reason, if not the reason, why healthcare in the US is so expensive and the system is so terrible. Yeah, there was a Pennsylvania senator who declared on Friday insurance companies should not be required to cover maternity care because why should he have to subsidize women having babies. Umm, because women don’t get pregnant by themselves? The ignorance, stupidity and insistence that it’s not fair are truly astonishing.
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Thank you for sharing about Bookman’s (and by extension, your) experience with MS and raising awareness! My best friend has MS, and it’s scary to me how quickly it has progressed (and how many times I’ve heard from her “well, I had another bad/scary fall last week, but still hanging in there…”). She lives at home with her mother, who has health issues of her own, and is her main caregiver, when she’s not at her full-time job. *frustrated sigh*
I have good health insurance through work, and so does she, but we both know how quickly life circumstances can change, and the new “health care plan” (which doesn’t seem to care about health, or care, or seem to be a real plan) truly scares both of us.
I wish you and Bookman a lot of luck with his future health and being able to get that grant for hearing aids.
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Best wishes for Bookman and yourself. The dismantling of Affordable Care is a predictable outrage by this administration which is particularly concerning for people with chronic conditions.
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Ian, thank you! I have been hearing more and more people who voted for the current administration saying that they don’t want the ACA repealed after all because they are starting to understand how much it will affect them. I wish they would have thought about that sooner!
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Lynda, what a difficult situation for your friend. We’ve learned stress makes MS worse and caring for a parent is definitely not a low stress undertaking. I’m sorry to hear her MS has progressed so quickly. It’s super scary because you just never know from day to day what is going to happen. I wish her all the best! And thank you for the good wishes!
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Fingers crossed that Mr. Bookman receives the grant to offset the cost of the hearing aids. Don’t get me started on healthcare. It is incredibly sad and it angers me so much how people don’t think the ACA is a good idea. It’s not perfect but at least it has helped hundreds of people have coverage. Oh and that tattoo is looking really cool!
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Illiana, thanks! And Bookman says thanks too. He’s also happy you think his tattoo looks cool 🙂
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Thanks for explaining the impact of some of the changes using Bookman as an example. I can imagine the lack of certainty is very anxiety-producing. I’m so glad though that Bookman continues generally well – with the exception of the hearing issue. That’s wonderful. I can’t understand why hearing aids are so expensive. There’s been a bit of an investigation here into the fact that most of the audiologists that people visit are employed by hearing aid manufacturers – and that this probably keeps the cost of the aids high. I’ve heard that CostCo (here anyhow) do a great deal, and have their own audiologists.
We here down under are completely gobsmacked by the way Americans have been fighting a more expanded health care system to ensure all is covered. Surely health is one of the rights of being a citizen? Our system is tinkered with a lot – but at least everyone is covered. The cost of medications though does vary greatly, depending on whether the government has improved them or not for what we call our Pharmaceutical Benefits Scheme.
Anyhow, thanks for this post. Very interesting.
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Thanks whisperinggums! We are grateful Bookman is doing so well. We’ve heard CostCo is good too for hearing aids. We will definitely be shopping around! I don’t know why they are so expensive either. Bookman’s audiologist just does the doctoring and doesn’t sell aids. He wrote him a prescription to take elsewhere. We’ll see what happens!
I’m completely gobsmacked too and I live in the US! A senator from Pennsylvania last week said he didn’t think insurance companies should be required to cover maternity care because he saw no reason he should have to pay for women having babies since he himself cannot have a baby! There was a huge outcry from women over that but he remains unapologetic. Grrr. Anyone who drives is required to have car insurance, homeowners are required to have home insurance and sometimes flood insurance depending on where they live, and no one complains about that. But tell people they are required to have health insurance? Outrage!
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Unbelievable. It’s like non-drivers saying they shouldn’t have to pay rates for roads, or people without children saying they shouldn’t have to pay for education. Where do they think their doctors, lawyers, accountants, etc etc etc come from? How do they think their food and clothes and white good, etc etc etc, get to them. Really – such simplistic, simplistic thinking, before we even get to values, ethics, morality or, heaven forbid, humanity.
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I know I was gobsmacked. On the plus side the guy came in for a lot of mocking from women saying that we shouldn’t then have to pay for his viagra and prostate issues. The whole idea of a civil society that provides basic public benefits seems to be completely breaking down and it is frightening.
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It really is, Stefanie. We have always been stronger in Australia on our responsibility to provide for others, but we can sense it breaking down here too.
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That is sad to hear. Makes me worry even more what the world might be coming to.
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Yes, it does. Scary.
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Thank you, your article is spot on, unfortunately everything you wrote is completely accurate. It’s time for people with any disability, I have MS, come together as one voice and demand Universal coverage for all in the United States. If anyone feels this way as well I encourage you to write letters to the editors of your local papers and your elected officials in Washington D.C. and make you voice heard loud and clear! Thank you.
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Thank you for your comment! I hope you are doing ok with your MS. You are right, all people with any disability and people who know and love those who have disabilities and chronic diseases, should come together and make themselves heard. Health care is a basic human right, not a privilege.
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Thank for raising awareness. This was a great post! I have been battling MS for 16 years. And it sometimes seems like an up hill battle. I started my blog a little over a month ago and it has been so great. I look forward to reading more of your posts!
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