I was asked why I haven’t written an update. The reason is because there hasn’t been any good news. Since returning to Seattle things have actually gone downhill a bit. August was a particularly bad month, one of my worst. Almost on par with the March/April 2018 crash (which wasn’t quite as bad as the October/November crash).
Let’s be clear. Life on the IVIG is better by a lot than where I was last October/November. But when you’re starting from 0.5 out of 10, in burning miserable pain that makes you want to kill yourself, barely able to stand, then a doubling or quadrupling is both a huge improvement, and still a long way from anything approaching normal. I am roughly about where I was last year during the July/August period.
The IVIG has improved the POTS, it’s improved the burning pain, and it seems to have made me a bit more resilient to PEM. But I reached a plateau in my recovery over April/May at about 2 out of 10 (it’s an imperfect scale, see my previous post on the subject). I’ve been hovering about +/- 0.5 of that point since, but for dropping down to 1/10 in August.
It’s unclear why things have plateaued. It may be something new has started (e.g. for some reason my WBC has been low during this period, it’s never been before, but we’re still monitoring). We’re investigating, but it could be that I just won’t improve as well as some.
I never really mentioned the ME/CFS diagnosis much publicly, because it’s such a stigmatized illness. And well because I also have polyneuropathy it seemed easy to focus on that. About 40% of people with ME/CFS do have polyneuropathy, and IVIG does help that, as it’s helped it in my case clearly. IVIG has also been known to help ME/CFS with some patients eventually recovering once on it. My doctor in CA who primarily treats ME/CFS patients tells me that based on her experience she would expected to see more improvement by now if I was going to make more gains on the IVIG. So it is quite possible that this is about my peak recovery. Or (hopefully) as I say something else could be going on that’s holding further recovery back right now.
MetLife have been playing continuous games of harassment since I went on disability, but they really upped their dirty tricks when we moved. Immediately sending a letter to the new address confirming the address change, but then three weeks later mysteriously sending demands for more information to the old address, 3,000 miles away. Demands that I have my east coast doctor complete an attending physician statement form, which is a totally bogus form I’ll try and share and explain later.
Somehow they expected him to do that for free. When he hasn’t seen me and when I can’t go into the office because, well, obviously he’s 3,000 miles away. So you know it’s a trick. Oh and they literally ask him to back date it. How is that ethical!?
I called and emailed them daily, but they refused to return my calls (claiming to have the wrong number for me) and refused to return my emails (claiming not to have my email address), even though they’ve both called and emailed me many times previously. I find out from Juniper that my disability was a week away from being cut off, and their little game would’ve succeeded. They’d say “oh but we sent a request and he didn’t respond”. So with escalation eventually they accepted I could have my PCP complete the statement instead of this doctor who is now 3,000 miles away and which I cannot see. But you wouldn’t believe how resistant they were to it, or how offended they were that I called them on their obvious bullshit.
Now it’s important to note these APS forms don’t contain anything that’s not already in your medical records. So I fought with them on that point too. It is quite literally a pointless time wasting exercise used to both try to get your doctor to tick the wrong box or slip and say the wrong thing that they can twist and use against you. And at the same time to waste your doctors time so that they get sick of having you has a patient. This is pretty well known (Google it) and is why some doctors refuse to do any disability paperwork (which is the wrong way to go about solving the problem but I understand it).
They threaten me that if my PCP does not send the statement by September 6th they’ll send my file to a higher level review. Now keep in mind they’ve already done that at the beginning of the year, and I’ve been disabled for a couple of years, so what exactly do they think has changed? Especially when my last medical records made it clear I still can’t fully take care of myself. I made it clear to them I didn’t want them talking to my doctors. I was fully prepared to go sit in front of one of their Medical Examiner’s and look them in the eye as they sell their soul instead of having MetLife waste my doctors’ time. Of course they don’t care about pesky things like what I want.
So my PCP sends over a thorough statement. Which they completely ignore and they send my file to an “independent physician consultant” immediately anyway. I.e. that higher level review they threatened? They did that immediately anyway. It goes to some guy in Los Angeles that I’ll tell you more about later. This person pulls out all the useless bits he can find in my two years long medical record, completely and utterly ignores my thorough physicians statement, ignores the exercise testing, ignores everything the ME/CFS specialist in CA has to say, ignores my diagnoses altogether, and goes right ahead and based on nothing says I can return to work. Nothing at all backing it up. And remember this guy is in Los Angeles and hasn’t seen me. But he’s writing what he’s paid to write, he wouldn’t get many jobs from MetLife if he didn’t keep giving them what they wanted and so that’s how you get these absurdities. This guy is an “Associate Professor” at a university. Absolutely shameful. And the worst part is, as obviously corrupt and absurd as this is, YOU HAVE NO RECOURSE. You cannot sue MetLife because they are protected by a terrible regulation under ERISA that prevents punitive damages. So no matter how badly they behave, they can’t be punished for it, ever. So what do you expect to happen? They can only profit by behaving in bad faith and screwing their customers, and your employer isn’t going to do anything about it. And that’s what happens, and it’s why I’ve learned that you should strongly consider getting a private LTD plan and not relying on your employer’s ERISA plan. That way you’re plan is governed by state law and you have more recourse against bad faith behavior.
The worst part for me though is I was betrayed by my new west coast neurologist. I really don’t understand it. And I’m really-really hurt by this. This illness has been horrible having my life taken away, having to fight to get treatment, having to fight to stay on disability. Having an illness no one understands that has this stupid name and a huge stigma. And I’ve come to accept that the IVIG won’t be my cure. It’s improved my life, I couldn’t live without it as explained in that other post. But it’s not looking like the cure that it is for some people. You need to be able to trust your doctors. But often you can’t.
This “independent” consultant calls my neurologist, he doesn’t call my CFS doctor who diagnosed and has treated me the longest, no he calls the guy who has seen me quite literally for a total of 15 minutes this year. No I’m very serious. This doctor has seen me for a total of 15 minutes. We discussed a port placement, I explained I had plateaued around May and still couldn’t fully take care of myself and was reliant on Vi for that. We discussed something called cranio-cervical instability and whether we can rule that out (some pretty famous cases of people with symptoms like mine being recently cured by surgery for that). He doesn’t ask anything else. He doesn’t record anything about functional capacity or my restrictions and limitations in his notes.
And yet, he takes a call from this guy in Los Angeles and somehow manages to tell him that he thinks I can do sedentary work. How? He hasn’t evaluated me, he hasn’t asked me about my capabilities, or my limitations at home, he doesn’t have my complete history. None of that. Our meeting was so damn rushed I was thinking I wouldn’t go back. But somehow he can say that he thinks I can work, on the basis of what goddamnit?
The kicker is, I brought paperwork with me to have completed for withdrawing my Australian superannuation (retirement fund) on the basis of my permanent disability and inability to work. He signed that! So what the heck!
And so now MetLife will deny my claim. I’m going to have to retain lawyers, spend about $10,000 on expensive tests to re-prove that I’m disabled, spend a similar amount feeding the lawyer. There’s a good chance it’ll be 6 months of appeal time without income, and if they don’t approve after that, then it’ll be another year waiting for it to go through the courts. So I get to spend $20-30,000 and be without income for up to 18 months because this doctor quite frankly fucks up and says something he had no basis to say. He’s clearly mistaken and he fucked up. But that’s exactly what MetLife wanted and all they needed. Just like cops like to split people up, badger them, try to trip them up into saying something they don’t mean, that’s what MetLife wants to do. They don’t want the truth, they just want to come up with reasons to deny you and make your life as costly and miserable as possible in the hope they can get rid of you.
I’m so sick of this shit. I’m far sicker and more disabled now than when I started disability two years ago, but they’re somehow getting to say now I’m not disabled, WTF? I look back at my function back in February last year and I just wish, wish so damn much I could at least recover back to that level.
I had so many hopes that by this point I’d be beginning to exercise and rehabilitate my body. So much hope that I’d have things to look forward to, that I could do the things I used to enjoy again. That I would be well enough to go home and visit my friends and family in New Zealand. It feels like I’ll never be well enough to do that. It really seems like that’s all not going to happen, and I just want to be able to live what little bit of life I can with what I’ve got, peacefully. But they won’t let me. They will just hound me into the grave. The stress of dealing with them makes everything worse.
I have to keep a log now of all my days so I can show how many hours I spend in bed, what major symptoms I have every day, what little thing I might’ve been able to do that day, so on. It’s really very dehumanizing to be forced to have to do that to yourself. To constantly have to keep fighting to say “yes I’m fucking sick” and “no I’m not going to get better, there’s only a 5% chance of recovery at this point”. For the rest of my life this is what I’ll have to deal with now. It seems I don’t get to have a life anymore.
On one of my calls with MetLife – it was a long one because I was giving her a difficult time because she couldn’t answer the obvious logical inconsistencies in what they were doing – the case manager admitted that she has very sick patients, that she knows are sick, and she still sends the APS form to their doctors every two months anyway. So how about that. They know a person is sick and can’t work, but they admit to still harassing their patients and doctors anyway. WTF is wrong with these people. Is no one honest anymore.