Vi is sick. And ugh Juniper…

Vi is sick. She’s been getting sick since late last year when the stress caused by Juniper’s health plan and Juniper’s total misjudgment and inaction started. More recently has been the stress caused by Juniper’s disability plan. She now has a serious autoimmune neurological condition.

Vi had a strongly positive biopsy result for small fiber polyneuropathy a couple of months ago. She has symptoms of tremor, progressive weakness and periodic paralysis, vertigo, and fibromyalgia. Needless to say there are some extremely low odds of two people getting autoimmune neurological illnesses, it does feel like we’re pretty unlucky.

She had to watch her husband suffer and get worse, while Juniper’s health plan repeatedly denied medically necessary treatment. Then watch Juniper ignore the problem, then listen to them completely and repeatedly misjudge everything and tell us they would do nothing. Ultimately to be put into the absurd position of her and her friends disposing of the majority of our possessions and driving us and our pets across the country, to sleep on mattresses in a bare apartment, with domestic violence upstairs, and barking dogs next door, in the middle of a former industrial wasteland with no support. As we know, just to repeatedly be proven right about the medical necessity, and for Juniper to begin walking backwards (very slowly).

Seeing her get sick from the stress (and me no better), I sent a number of embarrassingly desperate messages to powerful folks (at Juniper and elsewhere) pleading for help getting this resolved so we could get home over this time. I made a frank post on Facebook which I had to remove because I was advised to in order not to cause misunderstanding and upset potential allies in Juniper. That whole period was incredibly difficult and humiliating. I was so incapable. The feeling of having to hold back on details to be politic is the worst. And here I could see my wife getting sick because of me.

The engineers were all drunk when they designed Massachusetts’ interchanges

Even though we eventually found a more stable and tolerable situation in Portland, ME, the whole affair and being so far from her friends continued to take its toll on Vi.

I have utter amazement looking back at the whole story. What an absolutely ridiculous thing to have been forced to go through.

Now as we look at the situation ahead with Vi, it seems another inevitable cluster-fuck is on the horizon that we will have to battle through. Juniper’s health plan have already denied a blood test and CT scan for her. A fucking simple CT scan. I had to spend 3 hours this week on the phone being sent back and forth between Cigna, and eviCore, and Seattle Cancer Care Alliance, and Overlake Hospital. How does anyone get healthcare in this country? It’s so absolutely and thoroughly broken. A simple 5 minute CT scan required 3 hours of my time. 2 hours of agents time at Cigna and eviCore. 2 hours of MA time at Overlake and SCCA and Polyclinic. At least 1 hour of MD time at Overlake and Polyclinic and some amount of MD time at eviCore. That’s before the actual CT technologist, radiologist and assistant time at the imaging center.

Juniper’s health plan wanted Vi to do an X-Ray first. And then would only approve a CT scan if the X-Ray showed an abnormality. But in Vi’s case a CT scan is absolutely the standard diagnostic modality. An X-Ray would not necessarily show any abnormality for the illnesses in question. So it would be a waste of time, subjecting her to an unnecessary procedure, costing everyone more time and money, only to then be used as an excuse for denying a CT scan when it shows no abnormality. The logic simply does not compute – if the X-Ray shows an abnormality a CT scan would still be required to get a more detailed picture. If the X-Ray does not show an abnormality, well that’s expected, so a CT scan would still be required to rule it out. The whole experience of this health plan and the disability plan is Kafkaesque.

Of course yes we were right again. The CT scan was necessary, it shows a thymus hyperplasia, which is associated with autoimmune diseases, of which she now clearly has some kind. And also with a terrible illness called Myasthenia Gravis, which hopefully she doesn’t have, but some evidence is accumulating for it.

There is more workup to be done, but here we are just over a year after our battle with Juniper’s health plan for my treatment, and we now have to anticipate a repeat battle for the treatment that Vi now needs. Vi may possibly (we don’t know yet) need a fairly serious surgery to remove the thymus. And she has already been prescribed high dose IVIG, the same stuff I was being denied last year. We’re waiting to see if she will be denied and of course we are both now stressed about that. As she gets sick I worry because I still cannot fully take care of myself, how will I take care of her when she needs it.

Meanwhile, as hinted at, we have to deal with the threat of my disability being cut off. A story that involves harassment, unethical requests of my doctors, fraudulent letters being sent by the plan, and complete fabrications about me being put in their records. There’s so much more I want to say about this but I’m being advised to hold off for now. But as with the health plan, due to ERISA we have no means of responding no matter how badly they behave, blatantly they lie, or commit fraud. Juniper again are deciding to ignore the problem.

This story just gets crazier and crazier.

Hurricane Ridge, November 2014

Vi came into my life five years ago. I got totally and unexpectedly lucky. She is such a loving and caring person with a big heart who has added so much to many peoples lives. For the past two years has been my caretaker. I’m sad, and scared, and wish I could take her stress away.

MetLife, ugh. And why I haven’t written in a while…

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.

A bit of data and a pretty plot

Extreme Tachy: Mid-October in the ER, standing up to piss sets off alarms and brings the nurses racing. I had to calm them and explain this was “normal”…

It took an unnecessarily long time to be diagnosed with adrenergic POTS. It shouldn’t, any doctor can do it. This is such a damn easy thing to check for when a patient complaining of chronic fatigue walks into a clinic that every doctor should know about it. In my case I was also complaining of breathlessness and dizziness when standing, a dead give away.

All it takes is any regular old blood pressure monitor. Measure the heart rate and blood pressure while supine, then a few times while standing over a period of 5-10 minutes. (If you wanted to do it super-seriously you’d follow the instructions for the NASA 10-minute lean test, which is what the doctor who finally diagnosed me did in her clinic. )

Any doctor could’ve done it. But I had to learn about it and do it myself first. Then I would start asking for it to be tested, but they always did it wrong: having the assistant do it, but they all only ever take one reading pretty quickly after getting up. I could never press hard because just getting to the doctor was tough enough, then you’ve already been made to feel small and crazy, and so your confidence in pressing back and asking for things to be done a certain way is low. (This weird trend where a nurse or PA takes one measurement at one point after standing up persisted even in hospital settings, except for one time when it was done properly by one person.)

Roughly every week or two for the first 6-months or so I would go as far as doing a full test, where I lay down for a couple of minutes, take two supine measurements with the blood pressure monitor, then stand for up to 10 minutes taking a series of measurements.

After a while testing in this way became pretty burdensome. You’re having hard enough trouble standing as it is, and when you do you use up this budget that you now can’t use for the rest of the day. So I would do it less frequently. I would monitor my POTS using a pulse oximeter and randomly I would just snap a picture for the record.

During the crash that started late September it became impossible most days to stand for more than a minute or two at a time. So I didn’t record much during this period. (The picture above is one from this period in the ER.)

I’d never done anything useful with this data. It’s not perfect, the interval isn’t regular, the time isn’t regular, etc. But I could feel there was a trend, I could see it week to week in the changing results. And sure enough when I just plotted it there was a clear trend.

There is a clear trend before and after the IVIG. You can see some of the really high results I was getting in October/November when things were going very badly. I’m still surprised by how much variability I can have day to day, or even within a day. But improvement is obvious.

I’ve recently started gathering data a bit more frequently again, because it feels like my recovery has plateaued, so I’ll be interested to see whether that shows up in my orthostatic measurements.

Bubbles and other news

Since symptoms started to settle back down in February I’ve been enjoying a kind of bubble. The day to day variation in symptoms became more consistent. I began to be able to get out of the house more and feel periods of near normalcy. There’s been a lot more laughter and happiness. And I began to feel a sense of safety. I slipped into some routines and tried to forget how we ended up here, ignore the world, and not worry about what the future might hold.

This bubble was pierced briefly for a couple of days in March when we got a denial letter from Anthem. It turned out that Kaba Fusion (the people who manage the at-home infusions) had reapplied for a 12 month authorization earlier than expected and hadn’t told us they were doing this. We had expected this renewal to occur in April/May since the original six month authorization expired mid-May.

Anthem’s letter used the same “not medically necessary according to their policy” language that Cigna had used to torment me last year. It arrived on a Saturday, leaving us unable to do much about it for two days.

Anthem somehow ended up in this picture because the Blue Cross Blue Shield system is a kind of franchise. Different companies have the Blue Cross or Blue Shield (or both) rights in certain markets. Our insurance is technically through Blue Cross Blue Shield of Massachusetts (BCBSMA). The premiums are paid to them and the plan is an HMO plan that covers the New England states. BCBSMA is a non-profit company.

Anthem is a giant for-profit company that has been gobbling up independent Blue Crosses and Blue Shields around the country, in the process converting non-profits into for-profit entities. In 2000 it bought Blue Cross Blue Shield of Maine. And it turned out that after we moved to Maine everything is sent to the local Blue Cross Blue Shield “franchise”, which is now Anthem, for processing.

So Anthem received the authorization request, and applied a completely different policy to the review than BCBSMA uses. Anthem’s policy that was referenced in the denial letter does not list the condition (G61.89 and G62.89), whereas BCBSMA’s policy does.

In general we have found Blue Cross Blue Shield of Massachusetts to be very helpful, albeit a bit bureaucratic. A call with BCBSMA is a night and day experience compared to what we got when dealing with Cigna. They’re always able to find an answer or resolve a problem. I don’t fear talking to them. (Gee, it’s almost like being a non-profit makes a difference to a company’s attitude.)

This letter puts me in terror all weekend waiting for Monday to arrive. I am completely shut down trying to hold it at bay and survive until it’s resolved. It all flooded back. What I’d been through last year, and just how bad things had gotten at the end, the ridiculously stressful fight to get treatment, and the thought of going back downhill to that or worse had me in a literal state of terror. During October I had started to think about suicide, not because I was depressed, but because when you’re that incapacitated and its only getting worse, and there’s no real hope of improvement without treatment, then almost everyone does. I was really tired of getting worse. I was sick of being forced to jump through hoops to prove my illness to these horrible insurance companies (Cigna and MetLife). I think I was a few months away from it that point.

This was also wake up. When we came out here, and through December and January, the plan, which then continued as the operating assumption, was we would return home after about six months, regardless of what happened with Cigna and Juniper. Maybe six months would be enough for me I hoped. Or maybe after proving the treatment works out here that would convince Cigna once back home. We were close to turning around and going home a couple of times during December because things were very hard moving out here. It put a huge amount of emotional and physical stress on us both in ways that have left marks. We were lucky instead of going home we were able to find a nice spot in Portland that allowed us to settle in and give the medicine time to start working. After this letter and the memories it raised, it became absolutely clear to me that so long as I was still being treated out here, I would never go back to Seattle without a guarantee of continued treatment there. I simply could not go back to how bad things were.

So all weekend I feel like I’m back in the hands of this capricious system that put us through hell last year. That delayed treatment by months while I got worse (meaning I’ve only just recently got back to the level I was at when we asked for treatment). That may have permanently damaged my chance of a full recovery. We tried easing our distress by thinking that we could “just” move to MA so it can be authorized by BCBSMA again, like they did the first time, and then “just” move back to Maine after again. But theories really aren’t very comforting, and being constantly forced to play these absurd games has taken a big toll that’s left a mark on my psyche.

Come Monday we get some conflicting information. BCBSMA believe the authorization request should be forwarded to them for approval. Anthem say they can’t do anything it’s up to an external company called AIM who they contract with to do the reviews, and we need to call them. AIM were a complete brick wall, they can’t tell us anything or do anything. There is quite seriously no point in AIM having a phone number and staffing it. With much stress and many phone calls, by the end of the day Kaba Fusion has worked with my wonderful doctor to fix it. It took one phone call from him to the reviewer at AIM, and they approved it. They didn’t require resubmission or anything.

What the fuck. Phew. Relief. But still, what the fuck. Mega-for-profit-corp Anthem with its IVIG policy that is incredibly similar to Cigna’s (it’s as if there’s a template they all crib from) has approved 12 months of IVIG treatment after one phone call. This is on top of BCBSMA approving it within 24 hours of submission last November. We’re very much proven right that there was a huge problem with how Juniper’s health plan handled my case last year. (The five doctors we had supporting my case should’ve tipped them off. But I guess that’s what happens when there are no repercussions for being wrong and the only motivation is cost.)

I put the terror away and go back to my bubble. Weeks of infusions separated by coffees, reading books, being taken for the odd expedition in the car, doctor visits, and watching so much TV. (Sooo much TV. But the brain’s bandwidth is still very limited.) Until a couple of weeks ago, when my bubble went pop for a quite unexpected reason.

We had submitted all of our information for an independent review to determine medical necessity. The amount of time gathering records, asking doctors for letters, and so on is ridiculous. The amount of time doctors have spent on my case just to get me treatment and keep me in treatment is ridiculous and unfair to them, and it doesn’t seem to ever stop. (I don’t think I’ve mentioned the MetLife situation yet where they tried to delay reviewing my case for 3 months without paying me while they gathered records *they already had*.)

The review came back affirmative, supporting the medical necessity of the treatment. Juniper sent this to Cigna (the administrators of Juniper’s health plan), and with some arm twisting on the part of Juniper, Cigna will now approve treatment back home. There’s a lot more that could be said here about how things really work and have gone down, but I’ll save it.

Good news, right? Well that’s the news part. We’re finally completely vindicated, and able to go home. (No apologies. Just ignore what you were put through.)

There were two unexpected responses I had to this. First I became a bit anxious about the idea of going home. Home, as much as I want to be home, is also (as mentioned above) where I got sicker and sicker and was tortured by the insurance system. On the other hand Portland has been where I’ve recently started to feel safe. Second, I’d given them my number so that Cigna could call me to coordinate the start of treatment in Seattle. The case manager called and left a message… and did that ever do a number on me.

I had no idea I’d react this way, I just didn’t know this was there. But I was what someone with PTSD might call triggered. Totally overcome with anxiety and fear that completely didn’t make sense, and spent the next three days totally freaked out, having a break down and periodic sobbing. I couldn’t deal with Cigna, I just couldn’t even think about them at this point, I had to shut them out of my head. These are people that decided I should suffer and get worse. I was afraid of them. And it felt like I had to go back into the care of an abuser or something. So Vi took over arrangements. I will have to avoid them as much as possible and let her deal with them, but a couple of weeks later now and I’m still iffy about going home for this reason. I don’t trust them. I’ve developed a few responses like this. Every letter in the mailbox or phone call from an insurer now produces a fear response.

Update 5/16/2019:

So I’ve been to see a therapist, and it’s not “PTSD-like”… it turns out I have actual PTSD from this shit.

Status update

Forgive the crappy chart. You know pre-illness me would’ve wasted time building something prettier with ggplot.

Since the illness started I have tracked my symptoms and status in a number of ways. For a period between February and April when I crashed severely I started developing a lot of new (and scary) symptoms, and so I tracked each individual symptom with a severity rating every day. It was burdensome and ultimately pointless, but at the time I didn’t have any doctors who had a clue what was going on (that late February to April period was a very scary time). Once it started to become more clear what was going on and I had slowly pulled out of that crash I dropped this. (What I now know is crashes over time tend to become more severe and last longer, so you want to avoid them. Unfortunately I compounded a smaller crash at the end of February by starting to push through it too early in the recovery, I think this is what initiated the severe crash that followed.)

The other way I’ve tracked is very much more subjective. It’s a rough weekly/monthly average rating of myself between 0 and 100 where 100 is my pre-illness self. It turns out to work pretty well, in part because you know week to week or month to month if you’re feeling better than the previous or worse. And it’s not difficult to compare yourself and your sense of function over time. The above chart is this measure, and I’ve used it a number of times to explain to doctors the history of my illness (though those versions have more hand written annotations of specifics).

Since the IVIG it’s been a pretty clear upward (albeit slow) trend. I’ve had a few rough patches over the past few weeks, and I still get PEM when I overdo it. (Overdoing it is merely being on my feet too long these days.)

My average day now involves 13 hours in bed. 10 minutes sitting in the kitchen drinking water to hydrate. We have stools dotted around the house for me to sit on. The hydration really helps the POTS first thing in the morning, so I try to get 1.5 liters in me to start the day. 15 minutes sitting in the shower. I still have to sit to conserve myself since I’d rather use my “time-on-feet” budget for other things. I’ve had to take sitting showers since February 2018. 10 minutes walking to the coffee shop. 30-60 minutes reading or similar at the coffee shop. 10 minutes walking home. And nine hours or there-about sitting or laying on the couch.

On a better day I have a couple of hours I can spend on the laptop dealing with whatever bureaucratic stuff needs attending too. It’s amazing how much work is involved in being sick between dealing with medical billing errors, managing disability insurance requests, trying to get better treatment, coordinating to get a medical review so maybe you’ll be able to go home, etc. When not dealing with that stuff I’ll read some tech news (I spend too much time reading hacker news).

Needless to say my days are still very boring. I’ve spent a year basically in bed or on the couch. It wouldn’t have been so bad if I was still able to do mental tasks. But of course that’s not been the case. I am able to increasingly read more without running into the fuzzy concentration problems, which is good since I am sooo sick of TV (and there’s nothing even remotely decent I haven’t watched, my latest theme has been post-apocalypse and antarctic/arctic — I really wish someone would do a good The Thing sequel). All those books people sent me over Christmas I’m making my way through. Thank you.

A lot of symptoms have mostly or entirely gone away now, it feels good to have a simpler symptom list. Things like the flashes of light. Or the brain “switching on and off” symptom that nobody knew entirely what to make of except maybe some kind of TIA or seizure.

The fatigue is still overwhelming. It’s impossible to describe the kind of fatigue you get with this illness, and just how it feels to be so unrelenting. The best comparison is for those who have had a bad bout of mononucleosis, it feels like that, but worse, and never ending. My mononucleosis that kicked this off was a pretty bad case, but I would very-very much welcome returning to how I felt back during that.

The POTS is improving slowly it seems. I’ve not been measuring it as much as I used to, because it just seems to be slowly improving. But I did monitor it more this week, and it’s surprisingly variable. It now ranges between about 90 and 120 bpm when standing and my standing diastolic blood pressure ranges between 86 and 99 mmHg. First thing in the morning is always worse, and improved by consuming fluids. But then during the day it can be pretty random on that range when I measure it. I’m surprised how much it varies. But while the top end of the measurements is still high, I’m encouraged by the fact that overall the bottom end of the measurements is going down and the measurements overall seem to be more often lower. (Of course the measurements are much improved over the October and November period, where the ranges were 130-160 bpm and around 105 mmHg.)

As far as the POTS goes, I still have to limit any instance of time-on-feet or I start to get symptoms of lightheadedness, confusion, a weird kind of “where am I” feeling that is hard to describe, my vision narrows, I really need to sit down and then I won’t recover well for the rest of the day, fatigue will worsen, and I will have some PEM the next couple of days. But it’s improving

I also have chest pain now, that starts after being on my feet for a bit, and gets worse over the day. I don’t know what this is, but it is getting worse. I’ve had chest pain symptoms before but this is a new kind.

Cognitively it’s still hard to concentrate and hold things in memory, but this is improving over where it was. A hard aspect to understand about the cognitive symptoms is that using your brain can bring on and worsen your symptoms of fatigue. Particularly anything requiring attention like driving (which I don’t do anyway because I feel unsafe, and like I’m going to miss something and cause an accident). But when they’ve done studies on this using MRIs they can see that perfusion of blood is reduced in the brain — so you’re not getting as much oxygen and blood as a normal person. And then they also see interesting things like they can measure the amount of lactate and other chemicals in the brain and they are increased. So essentially you’re working your thinking-muscle, and it’s not getting as much oxygen and it’s building up these chemical products that don’t clear as well, and so you get symptoms from it. Interestingly when they measure temperature in the brain (which I was surprised to learn there is a technique to do this using MRI) brains in CFS patients also run about 1 degree hotter than normal brains.

Sleep is still poor and unrefreshing. That hasn’t changed.

Neuropathic pain (the burning pain that felt like being covered in fire) is almost entirely gone now. A few patches remain on the forearms and lower legs but over the past month it’s maybe ranged between a 1 and 3, over the past week it’s been entirely a 1.

The tingling and numbness is about 50% improved (maybe a bit more, there are times I really don’t notice it now, but it varies).

The myalgia (muscle aching) is still there unfortunately and varies. It’s definitely something that gets worse after overdoing it. It’s not a good muscle ache like you get from exercise, it’s a horrible ache like something you feel during the flu.

A symptom that has gotten worse is the dry eyes. I used to just get it during PEM or crashes. But now its constant. It could in part be due to the location (generally drier inside air, although we have a humidifier keeping it between 30-40%), or it could just be getting worse. A few doctors have suspected Sjogren’s for which this is a symptom, although I was seronegative something like 60% (IIRC) of Sjogren’s patients are, and it fits with the auto-immunity).


Round 3, quick update

We had to cancel the Mayo Clinic trip at the last minute because I was too unwell to travel, a result of side effects of the last round of infusions unfortunately. So it will be rescheduled for us later.

Improvement is continuing slowly. I know I have to keep from being too optimistic, but this feels like a real turning point after the constant decline over the past year and a half. Since starting the IVIG I’ve had a continuous slow gradual improvement (albeit with side effects). We are adjusting the IVIG to one infusion of 40g per week, and reducing the steroids to hopefully reduce the side effects I am having from them.

Round 2, the IVIG works, but things are snowballing

The second dose of the second round of IVIG was done yesterday. I don’t sleep on the nights after an infusion so I’m exhausted today. I get tachycardia all night and flu like symptoms for the next day or two after. I do two doses separated by a day in one week, followed by another two the next week, then two weeks off. Each infusion takes about 5 hours.

The IVIG works. The burning pain that started out very mild back in June and July, that slowly built up to a severe 7 or 8 out of 10 on the pain scale during October and November, has almost entirely gone away. It’s incredible. I barely notice it now. And it feels different, maybe that’s the nerves healing instead of being damaged? It’s so incredible how quickly you forget what horrible pain feels like. In my mind I know it was horrible, I remember laying at home all day curled up in a ball sobbing sometimes because it just wouldn’t stop, and no drug stops that type of neurological pain. I remember crying in the ER pleading for them to do something. But that’s basically gone, and now I just have these oddly rational memories of it being really-really bad, but can’t feel it.

My orthostatic measurements are improving too. Back in November before the first round of IVIG my standing heart rate had worsened to the point where it was ranging between 130 bpm to at times an incredible 160 bpm. It’s now ranging anywhere from 110 to 130. My standing diastolic blood pressure prior to the first round was typically over 100 mmHg, usually something like 105 mmHg. Now it seems to be always measuring below 100 mmHg, around 95 mmHg usually. These are huge shifts. They are still very bad. But they’re huge shifts in the right direction.

I’ve started to feel a bit better on my feet, to the point where for the first time in many months I’ve been able to take a few short 10 minute walks.

I am still severely fatigued and have a lot of brain fog, but I expect that will take the longest time to start improving.

On one of these recent 10 minute walks I went to a coffee shop. Someone next to me was talking graph programming, graph coloring and traversal, etc. on the phone with someone else. I’m such a huge nerd, it really reminded me of the passion I have for networking and how much I’d like to get back to work at some point. It’s hard to believe I’ve been sick now for 20 months. (Most people don’t realize it’s that long, because I’ve only been on STD for 12 months.)

Based on the results so far I have no doubt in my mind now if I were able to find a viable way to continue the IVIG I would continue to improve.

But nobody has yet presented us with the help required to make that happen.

Doctors needed

I am supposed to get regular tests to monitor my liver and kidney function. I’ve not had those in two months because I still don’t have a PCP. Here in Portland, ME there’s a 3 month wait list for PCPs at all locations, forget about all the specialist help I need. It’s absurd. I had a number of doctors in Seattle that were able to intervene with their expertise in any area that was necessary during my ongoing treatment, I have none of those now out here.

  1. An awesome primary care doctor who was wonderful in every which way, followed up on everything, and gave me all the support I needed to deal with this challenging illness. When you have a complex and difficult to understand illness like mine it takes a while to find a good doctor who will learn about it like she did. I miss her very much.
  2. An awesome immunologist/infectious disease specialist, who deals in complex cases and was the one who worked out what was wrong with me. I’d be no where if we hadn’t been lucky enough to see her, she is a god send to people with illness like mine that take some working up to diagnose.
  3. An awesome neurologist who could monitor my neurological changes, understood what was going on.
  4. An endocrinologist who was due to do a bunch of stimulation tests to make sure all my endocrine functions were working fine — tests which we had to cancel due to the move and still haven’t be done.
  5. A cool cardiologist who kept track of my heart condition through the stresses that the illness is putting on it, a specialist that would be very helpful to have right now because one of the things happening after the IVIG infusions appears to be an arrhythmia. Back home, he would be able to have me come in the day before my next round stick on a ambulatory cardiac monitor to wear, and we’d review the results after the round of infusions and know if it was a serious side effect to worry about or not. I have no way to get that here for months.
  6. A sleep doctor, for which there isn’t much to be done now but surgery.
  7. Surgeons, for surgery that now I’m not getting:

Before we left Seattle I had a surgery scheduled to correct the airflow in my nose, turns out of have a pretty insanely deviated septum and enlarged turbinate. Fixing this should help improve my sleep quality since I have mild sleep apnea. Improving sleep quality is always a good thing for a sick person. We had to cancel that of course due to needing to move because the IVIG was denied. So my sleep quality wasn’t fixed due to this situation.

I also was scheduled to start the work necessary for jaw surgery (something called a maxillomandibular advancement) to advance my jaws and pull my tongue forward, again for the sleep apnea, and because for some reason my jaws have become so misaligned I’m biting my tongue (and it constantly hurts). We had to cancel that too of course. It takes a looong time to set that one up, it’s basically never going to happen now unless we go home in the next couple of months and start up the process again. The only problem is the surgery is pretty serious, it’s not advisable for me with my condition to get it without being on IVIG, so how do I do all the orthodontic pre-work if it turns out when it comes time for the surgery I don’t know if I’m going to be on the IVIG? You can’t undo the pre-work! You need to know ahead of time that you’ll be covered for the IVIG through the surgery.

The Snowball

Vi is getting sick. We’re not sure what it is. We don’t have a primary care for her for the same reasons above. So she went to the urgent care, where they suspected Lyme and have run a Lyme test. God I hope it’s not Lyme. I’ve learned way too much about Lyme over the past year and it’s a horrible-horrible fucking thing that is so badly misunderstood and stigmatized by most people.

Vi has suspected fibromyalgia, that has been diagnosed previously by a rheumatologist and neurologist. It can be a serious condition, for her as with a lot of people, it’s been mostly a background thing that hasn’t really caused a major problem. But now she’s having worsening symptoms, pain, and fatigue. She’s been warned about the stress making things worse, and now the stress put on her with this move, having to take care of me full time without any support, and just the emotional toll of not having friends around (which can’t be understated), seems to be making her sick.

Denying my IVIG coverage, forcing us to move so I could get this simple fricken drug, so I could experience what it’s like not to feel like I’m covered in napalm and be able to stand up and walk again, is directly linked to making my wife stressed and sick.

This situation has begun to snowball.

Option 1:

If we go home, we’ll have support, we’ll have doctors, we won’t be alone. But I won’t have IVIG and I’ll continue to get sick, those 10 minute walks won’t ever grow into 20 or 30 or 60 minute walks, and I can forget about hoping to return to work. Maybe the horrible burning pain returns and I sink into regret for making the decision, crying again in emergency rooms as doctors tell me they can do nothing because my health plan won’t cover the IVIG, just as they did in November.

But it might prevent Vi, who I love so dearly, and who after all is my full time care taker from getting sick.

Option 2:

Medicare doesn’t start until July 2020. Realistically that’s how long we have to decide to remain exiled out here, unless someone gives us the help needed to get covered for IVIG so we can go back home.

If we stay, maybe I keep getting better on the IVIG. (But then again maybe I die of a heart attack because I don’t have a fricken cardiologist on my team for the next four months who can throw a simple holter monitor on me, like I do have back home. I certainly don’t get the sleep apnea fixed.)

Maybe even though we stay and continue the IVIG, it’s not enough to get me back to work, maybe all I get from it is a quality of life improvement, I can live pain free, and go for walks, and do basic household stuff to take care of myself. Don’t get me wrong, that is a big deal. Going from being bed bound in pain, completely dependent on someone else, to being able to stand up in the kitchen and make yourself a meal is night and day. If you haven’t been there it’s impossible to relate.

But maybe Vi continues to get really sick. Then who is around to help? That seems like a very bad scenario.

And if I do get well enough to return to work, I still haven’t had anyone explain to me how that will even possible without a return to the west coast, and a return to the west coast wouldn’t be possible without being covered for IVIG on Juniper’s health plan.

Impossible to understand

I still can’t understand the lack of help. I get the world is a shitty, horrible place, and there’s a lot of people suffering in the United States. But I’m lucky enough to be an engineer at a $10 billion Silicon Valley tech company who was covered by their health plan. That health plan had no problems paying around $80,000 for the various diagnostics and emergency room visits and hospital stays leading up to the diagnosis and request for IVIG. But then when it came to that request for the treatment that can stop it all that, the treatment that is working and making me better as we speak. A request that was made by some of the best doctors in the country who treat that specific condition. That health plan parsed it like a firewall, against it’s very short policy, dropped it into the default deny, pointed the finger at my employer, and seemingly didn’t even bother to read the appeal letters from my doctors. They didn’t ask any questions, they didn’t talk to my doctors. Just like that, denied treatment and left to remain severely disabled and in pain without any more thought or care.

This isn’t what anyone would expect. When we have a $10-billion-Silicon-Valley-tech-company health plan, we’re not supposed to be left in torturous pain, crippled and unable to stand and walk, when there’s a simple, safe, and effective drug that reverses that. Sure we might have co-pays, and deductibles, and so on. And I’ve probably spent about $25,000 (excluding this recent move to the east coast) on things that weren’t covered. Or visits to specialists in other states and so on. That’s expected. But not covering the drug that fixes a person. How can this be.

Plan B and the Brain Eating Virus

IVIG is a very safe treatment for my condition. At low doses IVIG helps those with immune deficiency by providing the protective antibodies from other people. At high doses used in my case it dampens aspects of the immune system. Reducing the production of antibodies and increasing the catabolism of antibodies. It also does a bunch of things with regard to dampening down T cell immune function as well and affecting cytokine levels. So for autoimmune conditions it works well.

Something like 70% of IVIG today is used for treating autoimmune conditions like mine.

If I can’t get IVIG at home, I have a possible second option I can try, but its more risky, very scary, and less effective. I really don’t want to do it. It’s a chemotherapy drug originally used for cancer treatment called Rituximab, and it’s somewhat affordable.

Rituximab is an antibody that attaches to the immune systems B cells, this causes your own body to kill those cells. The B cells are the ones that produce antibodies, so doing this does mean you no longer have B cells, and thus are no longer producing antibodies of any kind, both the good that protect you from disease, and the bad autoantibodies that are part of your autoimmunity. Rituximab however does not help with the T cell involvement though.

You don’t want to do Rituximab unless you really have to. It’s really unpleasant, it’s obviously very risky because you’re killing your immune system and are going without protection from common things that might kill you. But the scariest risk of all is that it exposes you to a disease called PML. This is basically a virus that turns your brain to mush (as in the picture above), and there is nothing you can do about it but die a very horrible death.

Catch 22

I think I’m stuck in a Catch 22.

I have daydreamed a lot about returning to work. The walk back onto the campus from the Light Rail stop. Reconnecting with people. Laughing to myself when I see those robot security guards. Learning what’s changed and happened with projects that are now over a year on. I’ve been a fan of Juniper ever since touching an M40e for the first time 15 years ago at Telecom NZ.

But returning to work is looking complicated. Recovery will be slow and incremental, requiring accommodation, long before I begin to look anything like my old self.

The catch I can’t work out is: IVIG is only being provided on this very narrow plan here in New England. When we return home we will be back on Cigna and the IVIG will stop. Any improvements I made on the IVIG here will revert. If the IVIG improves my condition then it needs to be continued for at least a few years (though the dosage may be reduced). If my condition is improved enough that I can return to work at some point, then I no longer get disability, and must find work. But if I can’t find work that has an employer who would accommodate me during recovery, and provide insurance that covers the continuation of the IVIG treatment, then I relapse.

Do I have to hope my condition doesn’t improve to the point I can return to work so we don’t end up homeless? Do I have to give up IVIG treatment because finding an employer that has insurance that will continue that treatment is impossible from this position?

I have too much time to reflect, and I think a lot about what if things had gone different. It’s hard to wish for too much to change. For example, I never would’ve met my wife without something bad that happened to me, which created the circumstances for it. I think about the the amazing places I got to work. Coming to the US to work at Amazon is such a great memory. I remember the excitement of the interview. The lunch at Republic Bar (about the only thing around there back then) with a guy who looked too young and too cool to be my manager, he was telling me all about cool sounding shit that was new to me, using merchant silicon, etc. The best team I ever worked with and a lot of fun on a job (between the stress). Working there changed my view on so much that it probably damaged me for future employers. Amazon provides IVIG in these cases, if I had made it work out we might not be in this predicament. Microsoft! That backbone was like my baby, I wish I still had hands on it. Had I never left, would Microsoft have helped me with the IVIG? I don’t know, but it seems more likely. Or where would we be now if I had got lucky with that Google interview 2.5 years ago. My specialist in Mountain View tells me that they’re absolutely the best at handling her other patients like me, it sounds like a dream.