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.
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.
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.