Living at the Whim of Bureaucracy

Tonight I decided to listen to the State of the Union, can’t explain why, just did.  So much talk about how wonderful our economy is and how the tax breaks have helped many.  There were the prerequisite feel-good stories, some which left me with more questions such as the police officer who adopted a drug-addicted homeless woman’s baby. I wondered if the mother was helped too. I looked the story up, the woman is still homeless – living in a tent.

Then came the military spending. as a mother of a veteran I would have no qualms if the additional money went to help our soldiers, again my thoughts turned to what we could do for those least fortunate here at home with $598.5 billion (2015 figure). Could we end homelessness, improve our schools, provide medical care for all.

Again, I heard God mentioned many times.  Most Christians follow the new testament and the teachings of Jesus.  In Matthew 25:40 it reads “The King will reply, ‘Truly I tell you, whatever you did for the least of these my brethren, you did for me’.  Catholic school sticks with you. 🙂

So did I hear tonight how those with the ability to help those least able to help themselves were going to provide that help?  If you call increasing technical schools (which you will need money to attend), then I guess I heard one solution.

Let me tell you a story. I was born with Muscular Dystrophy and for the majority of my life didn’t need any special medical costs. Six years ago I had to start relying on a wheelchair and today must fully rely on that chair for all mobility.  I have Medicare to cover my medical needs. Every five years I can submit a claim for a piece of equipment and (was told) it would be approved.  How it works is if I needed a wheelchair, and a lift to move me to that wheelchair the insurance would pay for one and I’d have to wait five years to receive the other.

Those of us who need appliances to move around our homes figure out the costs of each and then pay out of pocket for the lower priced item, if we can afford it.  If you receive Medicare due to a disability you can only earn a limited amount of income before you lose your insurance so saving money for appliances is difficult, and we can’t afford to lose our insurance because having a “pre-existing” problem the cost of purchasing insurance would be sky high.


I didn’t not submit a claim on the fifth year but after six my wheelchair stopped working and was becoming more expensive to repair and unreliable if I wanted to keep living independently.  I started the process in June 2017, completed all the required appointments (doctor, physical therapist and home inspection) by the end of August. Medicare denied my claim stating I hadn’t proved I needed a wheelchair.  So began the appeal process.

If I have the existing chair repaired the appeal process will be permanently denied. So I wait.

I wonder if the booming stock market is worth my being trapped in my home for the last four months? How would any one in Congress feel if they could trade places with me?




    • Thank you, Cynthia, I do appreciate your offer. At this point we are starting the process all over and hope to speed everything up. I just found an advocate Monday who is trying to make connections through the insurance to pave the way for the approval. should that fail I will keep your offer in mind.

      Liked by 1 person

      • Talk about a broken system. I’m so sorry you’re dealing with this, Lois. My sister has MS and my friend ME has a son with severe Cerebral Palsy (he’ll never walk or eat on his own and is in a mobility chair all the time). When it broke, they were not allowed to have it repaired (same scenario as yours). My heart goes out to you. (visiting from Marlene’s blog). Alys


        • Oh Alys, I’m so sorry to hear these stories, I wish I was the only one to experience these things. A good friend has a child, well he’s in his 20s now, with the same situation of feeding tube, non-vocal etc. when there are issues with his chair it’s a real pain to do all the running around to get approval for repairs.


          • The adage “kicking someone while they’re down” comes to mind. This is what it feels like. Heavy bureaucracies benefit no one. I’m sorry for anyone that travels this complex and infuriating path. I love your positive outlook on life. I know that helps! xo


          • Alys, thank you. I figure I can sit and stew which will only stress me out or I can make the best of it and get through it without it affecting my health adversely. Since life is short I try to take things day by day and not let too much bother me more than it has to.

            Liked by 1 person

          • I don’t know where I would be without my meditation. I taught my boys when they were young to both meditate and do yoga. Just the other day my son sent me a picture of his nine year old daughter sitting in th elotus position meditating. I was so pleased to see he continues to practice and passed it on to his children.

            Liked by 1 person

  1. Lois
    I only watched a bit of it, but I did catch the part where the officer adopted the addict’s baby. I actually turned off after that, because of some personal “gripes”/”concerns with this type of thing….(an Officer/EMS/similar) adopting the baby/child of someone in obvious crisis. a)-what happened to the Mother (you answered) b)-what really was the Officer’s “intent”…? — had he been “looking” to add to his family? c)-It seemed like this Officer already had a largish family (Five)….– Seriously — do Police Officers get paid that much that they can afford (both money and TIME) to care for and nurture Five, plus yet another? (maybe there was a couple who could not have children/had only one?) d)I have heard that “money is made” through the adoption process..(seriously)…In some places there are bonuses paid both to the Social Worker and the Adopting Family for each adoption (as opposed to treating the Mom and working to shore up that family) e)Did this Officer/wife “care for”/”encourage”/”nurture” the Mother while pregnant (to help ensure a healthy birth), and then sort of drop her after birth/once they got the baby.

    There are so many more concerns I have re this type of thing. At first glance it is a feel good story, but I have often seen it in the news, and for the past five yrs now I have been concerned….

    Re your authorization for services/wheelchair….— I cannot understand how anyone/any got agency can be so stupid. it is obscene.

    For sure do not get the chair repaired…you need a up to date reliable one. All I can say, is “play their game”…..Next time start the appeal a couple of yrs ahead of time…


    • Hi Anon. It seems like your brain works a lot like mine. Here’s the link to the story I read to fill in some of your questions

      No, I’m not going to get the chair repaired unless I can do it through another company and pay out of pocket so the insurance doesn’t find out. It would be nice to have that working for a back up in the future so I wouldn’t be without a chair when one breaks. At this point the costs are just too much for me to afford.


      • good idea, if you can get it repaired yourself (cheaply) as a backup. Won’t they make you “trade in” the old one for the new? Hope not.

        Thks for the link, will read it later. No idea exactly why I feel that way, but a few yrs back when I was watching the reports of a similar situation, it popped into my head. I CANNOT get it out.


        • I asked about them taking the old chair when I was starting the process to get a new one and was told it was mine and no they don’t trade them in. It was suggested that I keep the old one to run around the yard and do my gardening in which could extend the life of the new chair. Unfortunately, it died and now sits in the corner of my bedroom taking up space. I’m still thinking of repairing it myself as a back up for when the new one breaks down.


  2. Oh, Lois! I am frustrated for you no measure. Is there not someone who can advocate for you in this crazy system? I’m sure you have already pursued all avenues. Makes me want to shake someone. I can’t watch anything #45 says or does on TV. I can’t look at his face or stand to hear his voice. There is no honor in that man. What makes people follow this kind of person. Please let me know if there is anything I can do to help you get your chair. I’ll write a letter too.

    Liked by 1 person

    • Thanks, Marlene, I knew you would understand my frustration. I’ve now exceeded the amount of time between when the doctors signed the paperwork to continue the appeal so have to start all over again. I just hope I have a working chair before the nice weather arrives or my mood will drive everyone away from me.

      The speech last night was god-awful be glad you didn’t watch it.

      Liked by 1 person

  3. You are much braver than I am… I couldn’t make myself watch the “state of the buffoon-ion” as I’ve been calling it. I feared I might do damage to my TV or computer by throwing things at it… not to mention the damage to my psyche…

    I can’t believe Medicaid denied your claim – it’s outrageous! I just don’t get it… like the fact that you rely on a wheelchair now isn’t enough to prove you need one? I guess stories like this do make me understand why people fear a single payer system… of course that assumes your chances of getting what you need are better if you’re in the private insurance system, and I’m not sure that’s an accurate assumption. It just shouldn’t be so hard.

    I saw a video online that made me think of you. It was about a motorized attachment for a regular manual wheelchair that basically turns it into a scooter of sorts. Here’s some info:

    I peeked around and well… it doesn’t actually look very affordable – I saw prices ranging from $900-$2K, so it’s probably not any cheaper than a power chair – but I did think it was interesting.

    I dearly hope you get some resolution to your wheelchair situation soon. Four months is a ridiculously long time to wait.


    • This has nothing to do with this post, but it made me think of you. This info showed up on the local news today:

      Seasonal Snow Totals 2017-2018
      – Erie, PA – 144″
      – Syracuse, NY – 87.7″
      – Denver, CO – 13.2″

      Feast or famine, as they say!


      • That’s hilarious to me. I used to watch the news and see what weather Denver was having as that would be coming out way in a few days. Now the jet stream has changed and I can no longer predict our weather by what you get. Winter is still trying to hang on here. We had snow early in the week and 78 on Friday and today with snow expected on Tuesday. This is April a month we can count on one hand how many times we’ve had snow in it’s history.


    • I took a look and think that’s a great idea wish it was more affordable. As it is now I can’t transport my power chair when I go places with my kids. I suggested I would pay for a carrier to attach to their vehicle but my son leases his vehicles for them and can’t add the hitch on them. Anyway, when I go places with them I have to use the manual and then must rely on being pushed around, it’s not that bad except that Little Guy needs to be watched. So he either has to hold my hand or sit on my lap or he will wander off. Plus, I hate having to ask to be pushed in a different direction or to stop so I can see something. I know it sounds ridiculous but the few times I go places I don’t like not having the freedom to wander at my own pace.

      It took five months this time but I now have a new chair. Grr. I have to have a better backup plan for the next time this happens.


  4. Oh Lois, what a fiasco for you to just be able to be mobile. That insurance company has a lot to answer for. Would getting your story into the media help do you think? It would here. Deepest sympathy about the person running your country.


    • Hi Anne, I hardly doubt a media piece would help as the prevailing thought is too much is already spent on helping the less fortunate. We have to take care of those tax breaks for the rich right? All joking aside there is a mentality that those of us with needs such as mine shouldn’t be relying on the government to fill them.


  5. My heart bleeds for Americans like you, Lois. I can hardly bear the frustration of this and other stories I read (and believe me, I avoid reading/watching/listening to anything about your president if I can help it, while my husband just despairs and is constantly reading/watching/listening! You bet nobody was happy about his brief stay in our country last week, either). But I don’t want to get into that as there is no solution or quick fix even if that situation did change, sadly.
    I am so sorry for your plight, it is unbelievable that your needs aren’t met. Could you crowdfund? Or go to the media? There are so many good people out there but it’s hard to be in the right place at the right time.
    You must be screaming inside, while I can only feel helpless and keep my fingers crossed that something somewhere will go right and give you the quality of life you deserve.
    My most heartfelt regards in this new year, Lois. xx


    • Swiss Rose, thank you.

      I can’t even imagine what the rest of the world’s people think of our countries policies or the man in charge at the moment. I cringe when I hear he is going abroad and wish someone could keep him mum while he is.

      I am definitely still learning patience but at the same time I want my independence so yes I get angry and depressed with the situation of mobility when I have to wait around for approval of something I need. I refuse to bring everyone else around me down so I do a lot of escaping for my mental health in crafts and other activities and ignore the number of days these events may take to rectify. I am in a better place now having finally gotten a chair. The one redeeming timing of it was that most of the time it was winter when I am indoors more and with people less. I would tell myself that as long as things were good by spring I would be fine and in the meantime fewer people stopping by meant I didn’t have to pretend to be happy all the time.


  6. I feel so much anger, Lois, on our behalf. And I’m not usually angered by much. Our countries have more than enough money that we could care for those who need help; instead, money is spent on useless posturing. A couple of days ago my cousin M watched the speech and he told me that one thing mentioned was that the squatter in the WH (sorry, I can’t call things other than what they are just now and that person is the least statesman-like ‘elected’ person I’ve known about in many decades) wants to have a huge military parade (to impress / intimidate N. Korea? or . . . ) At a cost of about $20,000,000 How nice that money won’t be wasted on medicare or helping you get a proper wheelchair, or feeding the hungry or housing the homeless . . . If you look out your window right now, you will see smoke rising to the far north west. It’s from my inner fires . . .

    I don’t know if a letter from Canada would help you, but my friend in WA would sign one if that would help. And have a look at this post by my friend Selma: I don’t know if you can raise money yourself, but if not, do you have a friend or relative who could collect money for you and then use it to fund a chair? I bought Jane’s LoveBomb pattern and if you had something similar, I’d be more than happy to support you and I suspect your friends here would be happy to join me, too. Do think if there is any way this could be done. Much Love and light to you, Lois. Hang in there!! ~ Linne


    • Linne, I did see the smoke rising 🙂

      I too heard about that damn parade, later reports said there would be a cost savings by not having I believe it was the tanks as part of the parade. The child in the White House needs to have a guardian to take his twitter away and give him time outs along with teaching him how to play nice and think of others. The spending for his golf trips alone could have fed many and paid for my chair many times over on from just one of those trips. It truly amazes me that we will pay to build planes the military doesn’t want at a cost that could eliminate WORLD hunger but avoid the basic needs of the citizens.

      I also appreciate your suggestions on how to pay for my chair on my own. I had thought of many ways to do just that, but then I would also be responsible for all the repairs for the life of the chair as well. They get you coming and going around here. Anyway, I finally have the new chair just in time for hopefully some nice weather.


  7. Dear Lois, I can only imagine your frustration, Has anything moved in your favour since you wrote this.. It is disgusting in this day and age that you should be without mobility.
    We have little to complain about here in England even though our NHS is in a bad state.. Nothing compares to the lack of care being provided in the USA..
    My heart goes out to you .. ❤


    • Thank you, Sue. It was definitely a frustration. All I could do was take things one day at a time. I do have my new chair, finally but had to find alternative funding for it. So many here in the States have no idea how much better other countries do at taking care of their people. The propaganda here tells us that the quality of the medical care where “socialized medicine” is is of poor quality yet our statistics tell another story. We fall near the bottom in terms of health in the ageing and our infant mortality rate is one of the highest in the developed world.

      Liked by 1 person

  8. Dear Lois I hope all is well with you, its been a month now.. I received a spam email using your email address, I know it was not from you it just had a link.
    So sending thoughts and well wishes my friend, Know you are in my thoughts xxx Hugs Sue xx


    • Sorry for the spam email. I heard Marlene got one too. It wasn’t from me I promise. I’m good and should be able to post more regularly now, although it’s been awhile since I had any kind of a regular posting schedule. I missed you and plan to visit shortly…a real test of the computer to be sure.


  9. Lois, I hope everything is okay. It’s been a long time since your last post which is unusual. You are missed and I want you to know I am thinking of you. It would be great if you could write a line or two to let your followers know you are okay.


  10. Dear Lois, just popping in for a quick visit. I do hope you are all right. You are in~ my thoughts every day. Much Love and Light to you along with a few big warm hugs, too. Wish I could deliver those in person.
    Take care of yourself. We’ll be here whenever you are. ~ Linne

    Liked by 1 person

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