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

  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…


  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!


  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.


  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


  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


  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 .. ❤


  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


  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.


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