Fighting the Fight

No, I’m not dead. I’m so alive and ready to move, it seems unreal, and I’m going to share as briefly as I’m able why I have not been present for some of the fun.

Since SO received his kidney transplant, we get up everyday, look at each other and grin. It is wonderful and humbling to be in this place, and I mean humbling in the best way possible. Recently it occurred to me that I regained the SO of ten years ago. There were things I had grown accustomed to doing without namely his very quick mind, and now he’s back and the force I had encountered as a young woman in college and never having seen his like. I really thought I had remembered this clearly and have even written about it on this blog, but I was wrong. My memory did not hold a candle to what he really is, and it’s so wonderful to have him return that I’m almost like a babbling idiot when I look at him.

But there’s a dark side to what has been going on. We’re in a crucible. When he became a transplant recipient, he became eligible for Medicare. Considering the exorbitant cost of insurance that we have been paying the last several years, it made total sense for him to go on Medicare for the three years he’s allotted, and we did all we were supposed to do to bring this about. Dotted all the i’s. Crossed all the t’s. But something got screwed up on the government’s end. We have begged and pleaded to get it fixed, and we had to retain a lawyer. It is still not fixed, and the problem is the mistake they made cost us SO’s health insurance as well as potentially costing well over $100K. But most important, it may cost SO’s ability to get his immuno-suppressant drugs. He went to get just one drug and found out the insurance was canceled and was told he would have to pay $3,800 for a month’s supply. Without it, his transplant is effectively useless. All of his drugs cost over $8,000 a month out-of-pocket without insurance or Medicare coverage.

We could buy a policy, but it will cost a few thousand a month. With everything going on, it’s not prudent to commit to that. In the meantime, we did get some temporary assistance from a program that helped us pay for the drugs at a reasonable cost and were treated like we were mooching when we went to the office to apply. Unbelievable when we have never taken advantage of assistance. Our thinking has been that we’re able-bodied and need to take care of ourselves and leave programs for others who are not able. Since we were really in need this time, we availed ourselves. But what a demeaning process. I feel for those who have been through it. And please know we did not enter that office with haughtiness. We were grateful to be there but were still treated awfully as were others we witnessed and most of those terribly sick. That was the hardest thing — to see people who were not really able to manage the process be treated as if they were lowlifes.

Anyway, this thing has already almost beggared us at times, and we hesitate to completely wipe out our retirement, but if we have to do that, we will, and we have already been depleting it to deal with these staggering costs. And that with the knowledge it will be difficult to replenish. And why is all of this happening? Because a lady at one of the Social Security offices completely fouled up SO’s application,and I’m thankful that I don’t feel compelled to use the ‘f’ word I would have used a month ago. A particular meltdown in the middle of a neighboring town might have helped. Something happened about a week or so ago, and I literally was sitting in my vehicle alone yelling my head off over and over and over again. I’m sure if anyone happened to see me that they thought I was insane. After I calmed down and my heart rate slowed down, I let go of feeling that SO and I were almost completely alone in this fight and realized God is with us. In the midst of this realization, I began to be thankful that we have quite a paper trail to prove the government’s error, and now we just need to prove it. We have filed an appeal. But before we were able to do that or learned we could do that, the time and money spent on pursuing Social Security has been enormous. I won’t bore you with all of that. Just trust me that it has run us ragged hence the keening like a banshee. Certainly this place was not priority in the midst of that, and this is not an apology.

I said in another post that everything that is happening is making me into a crusader. I meant that about the insurance industry, and now I am becoming zealous about the government’s role as well. And my friends, I am a bulldog, but I don’t mean to imply that I’m rude. I abhor rudeness. But I have been accused a few times in my life of being tenacious and mostly from people paying it as a compliment with a couple of times meant as a criticism. Sadly, I’ve mostly recalled the criticism. Isn’t that how it always happens in our minds? But today, I’m glad I’m a bulldog. I’m glad I’m a fighter. I’m glad I’m not someone who easily gives up on something, and I thank God for that ability. He gets the credit.

Frankly, sometimes I like to think of God like Chuck Norris. No offense to the Lord, but I figure He can take on anything. Even Social Security. :D And yeah, the SS office can feel like thousands of cars barreling in on you:

chuck-norris-meme-joke-cars-car-traffic-jam-what-causes-traffic-jams

Earlier today when SO and I were speaking to a government investigator and the investigator said we have been through a lot, SO said, “I appreciate you saying that,” and later in the conversation said to the man, “I want to say again I appreciate you acknowledging our situation, but I keep thinking of all the people who are elderly or infirm or insolvent enough they cannot pursue a government error. What do those people do? I can’t stop wondering about them.” Yep, that is what keeps coming back to our minds. When this is over for us, we plan on doing something to help. I’m not sure what yet, but whatever it is this hard won knowledge we’re acquiring daily can’t simply stop with us. It’s just too dear to keep for ourselves alone.

All of that aside, I have so many things lined up to post here that are on the subject, and I am not giving up on those either. They’re fun and make me laugh or at least feel good, and I plan to share them. So bear with me as I deal with the crucible and am erratic in sharing my Richard Armitage grins. That’s how I think of them — even the things that are sometimes uncomfortable. Maybe I’m warped in that thinking, but I don’t believe so. I think (arrogantly perhaps) that my vision of life is becoming crystal clear, and I’m thankful to God for that and that I am not angry at the lady at the Social Security office, whose head I could have wrung off her shoulders at one point. I’m passed that now and glad because that kind of anger just clouds the mind, and I need it clear to continue.

Thanks for listening, and I’m skipping on a Richard picture today. Go over and look at Pinterest. :D

11 Comments

  1. My heart goes out to you and hope that you will resolve everything to your satisfaction. I am keeping you and your SO in my thoughts and prayers. Love & Hugs! Grati ;->

  2. Dealing with the government, especially when you are in a vulnerable position boggles the mind. I think that there must be a rule somewhere that if it is logical, government cannot be involved… Working in government and seeing it from the inside is no better. I do admire that despite all the craziness that is going on, your first instinct is to come back at the problem and help those who might not be as fortunate as yourselves. You guys are awesome!

  3. Hugs. Love. Prayers. … Yeah, government. A quagmire.

  4. My thoughts and prayers go out to your family at this time.

    I understand the fluster with dealing with the government, I take care of affairs for my dad and ran into a problem last fall. I was to the point of tears and feeling completely helpless. I finally got the answers and help I needed this week, and that I can get more help if I need it.

  5. What a disaster. I am still praying for you both.

  6. Frenz, I missed out on the news that SO had managed to get a transplant, so I’m really happy to hear that he’s got a new lease of life. Vastly disturbed on the other accounts though.

    Do you have a government health ombudsman? Or is it possible to get your local federal politician to lobby on your behalf? Worst case scenario – get Ellen onto the case and not just for SO but for all those who are treated so mindlessly by government agencies. Whilst I don’t watch her a lot here in Australia, I understand she’s almost as powerful as Oprah used to be.

    Thinking of you both and hoping it all works out…

  7. Oh , what a nightmare, having to deal with all that bureaucratic red tape. I remember my poor dad’s struggle with Veteran’s Affairs. The man suffered a horrible injury during infantry training and they kept wanting to deny him his disability because of a congenital anomaly with his back (one I happen to share). I hope things get sorted out sooner than later, and it does sound as if your head is in the right place about it all. Don’t get me started on how I feel about drug companies and what I see as price gouging people who are in desperate need . . . All the best to you and your husband. *hugs*

  8. It breaks my heart to hear stories like yours and they are all too common these days.

  9. A bulldog who just posted a beautiful pslam to her blog. (hugs) Fight the good fight, Dearest.

  10. Thank you, Kitty! And thank you to everyone who has prayed for me and mine and encouraged us as well. It is a blessing.

  11. I am such a huge fan of your blog and glad to see your update. You have been through so much and your family represents all Americans and what we have to look forward to in the future. If this can happen to you it is just a matter of time for the rest of us. I am semi-retired from the Armitage army but will be happy to sign up in your fight against the pure crap you have had to deal with. All the best to you and your family. You are so lucky to feel His presence in your life. So many people can’t.


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