Taking The Time To Recognize The Wins
Living with chronic illness is a constant battle, a constant tug-of-war, you’re constantly in pain, you get really good-looking, and it makes you constantly cranky. Pretty much all bad things (it’s hard to turn down all those requests for dates) and, more often than not, that’s what people tend to hear about. After all, that’s what having rheumatoid arthritis or any other chronic disease is mostly about – the ways it makes life more difficult. Also, the handsomeness that I previously mentioned.
Rheumatoid arthritis makes life more difficult
Look, it’s no surprise that when people talk about their RA, it’s mostly about all the ways that the disease makes life more difficult. Even if, somehow we, forget how badly it can impact a life, it rears its ugly head. And before you know, you’re explaining to your cousin that you can’t come to her game night because you woke up so sick that morning that you haven’t been able to get out of bed all day and you’ve binged the latest season of It’s Always Sunny in Philadelphia and it’s already 8:30 pm and there’s no way you are getting up and getting into the shower now. Or something like that.
The point is, it’s hard to forget about all the bad things RA and other chronic illnesses entail, but that just means it’s all the more important to take time to celebrate the wins.
Celebrating the small wins with rheumatoid arthritis
What’s a win? Does it count if I only had to use the hairdryer for 10 minutes to unfreeze my knee? What about that my latest infusion didn’t cause the same allergic reaction it did the first time? What if I am not hurting just enough to go to the bar to watch football? Also, I only got into four accidents instead of the usual seven when I drove to the doctor! Well, the answers are "yes", "maybe", "yes but only on Sundays", and, err, "yikes". The point is, if you think it’s a win, it’s a win.
Fighting denied Medicare coverage
Recently, I had the privilege to help someone. This amazing person has been fighting leukemia, graft versus host, RA, transplant issues, and a host of other co-morbidities for over ten years now. This person had been on and off disability a number of times because, when they didn’t need it, they didn’t take it.
Huge medical bills due to chronic health issues
Something I think many of us have to admit we might not even have done ourselves. This person had their Medicare denied after the two-year waiting period for their latest disability application and was about to be responsible for a while slew of medical bills – roughly enough to make Jeff Bezos himself fall to his knees and weep with rage. At this point, I enter, stage left (to roaring applause, as usual).
Taking Medicare to court
Why did I offer to help, you ask, as if my being a paragon of Internet virtue (actually nothing) and a helper of the poorly-medical-insuranced isn’t enough of a reason? Well, because I fought the law and I won.
Yes, I took Medicare to court and argued my case successfully in front of an administrative law judge, so I had some experience in this arena. Am I an expert? Not really. Hero of the downtrodden? Your words, not mine. Finder of lost TV remotes? Unfortunately not (been stuck on QVC for months, ugh no more Lisa Rinna). No, I’m just a man who took on big ‘surance and won. A modern-day Norma RAe. (See what I did there?)
Why I was denied Medicare to begin with
Long story short – this person was denied Medicare insurance because of a form they signed eight years previously. Yes, that’s 8. Three plus 5, two times four, one plus – well, you get it. Eight years in the world of chronic illness, cancer, graft versus host, etc is a veritable eternity. Things change so much in that time for anyone chronically ill that there is a chance the patient’s own parents might not even recognize them, so being denied coverage for an 8-year-old reason was absurd.
In addition, as we dug deeper into the quagmire of octopus tentacles and hydra heads that is disability bureaucracy, we realized that Medicare had even broken its own rules regarding the reinstatement of Medicare for those who re-apply disability. It turned out the rule that was used to deny this person Medicare only applied to expedited disability reinstatement, which very clearly did not apply to their case.
Writing a letter to HHS
In the end, we wrote a long letter that laid it all out to HHS, detailing how not only did this person do the right thing and give up disability when they didn’t need it, but how they also qualified for Medicare reinstatement by their own rules. We mailed it off with the highest of hopes, no idea what to expect but hope springs eternal.
Having my Medicare reinstated retroactively with full coverage
We waited, and waited, and waited some more, and just before Christmas the letter came back – Medicare reinstated retroactively, full coverage. We won! It was wonderful holiday news, but it also made me realize two very important things. First, how important it is to fight when you know you are right, and second, that you have to take time to celebrate the wins, especially in a life filled with illness and more than one person’s helping worth of bad news.
This Medicare win reminded me to be thankful
Life can seem like it’s all doom and gloom very easily when you are chronically ill. And even if it’s just a five-minute rest to be thankful for something positive, you must take that moment to acknowledge that things aren’t all bad.
Life is rarely all one way or the other, but we do get overwhelmed easily and sooner or later we focus only on the bad and it makes us think that’s all there is. So please, make time to recognize the wins, even if it’s just the fact that the local FroYo place finally has your favorite topping in stock. Oreo Bits. Yum. Talk soon.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?