I understand your anger. I'm 64, was diagnosed with myelofibrosis nine years ago and was then told my prognosis was three to five years, so my first bit of advice is that however down in the trough you feel, do not give up hope and don't let your husband give up hope.
Though you mention your disability insurance woes you don't mention where you live. I live in San Francisco and have been followed from the onset of the disease not just with hematologist/oncologists, but with a team (at UCSF) who specialize in these rare blood cancers. Is your husband being treated by the best of the best? As I'm sure you now know knowledge about myeloproliferative disorders is limited and only a comparatively small segment of the medical community is equipped to treat the rare patient with myelofibrosis. So, point number one is to be sure that he's at the center of the medical myelofibrosis universe. When I was first diagnosed the hematologist/oncologist who did my (first) bone marrow biopsy and made the diagnosis said, "This is beyond me. I'm sending you a team of specialists" and he was himself on staff at UCSF.
The doctor who has done the most research into myelofibrosis in Dr. Teferi at Mayo Clinic. There's a small community of doctors who really know about this disease and they all follow each other, but be sure your husband's doctor knows about Dr. Teferi and is up to date on his latest findings and protocols. If your doctor doesn't know about Dr. Teferi, think twice as to whether your husband's being treated by the right doctor.
You're absolutely right that the red tape, delays and bureaucracy will continue to fray your nerves, but now, more than ever, your husband will need you as his advocate. At the numbers you mention (I assume you're talking about his hematocrit counts), he's weak, persistently exhausted, feels lightheaded whenever he gets up, may be having trouble catching his breath, feels his heart racing, is probably suffering night sweats, and feeling ongoing discomfort in his abdomen. He's in no shape to do the fighting.
Again, to offer some hope I can tell you tha at one point I was down to 6.1, could barely move, received twelve units of blood over several weeks and it took me four to six months to get back to my "normally abnormal" level. In the interim, it was all on my wife to deal with the many issues that arose, medical, insurance and otherwise, because I was utterly incapable of doing so. The good news is you can come back. I did and I'm messing up the medical statistics on mortality for this disease, so hang in there and be sure your husband doesn't give in to despair. You haven't had time yet to wrap your minds around what's happening. Trust me. After the anger will come self pity and despondency, but hopefully, eventually, acceptance and a willingness to fight.
If you want more information on the regimen of pills and such that I've taken and am now taking I'd be glad to share that with you but if your husband is in the hands of a doctor who's an expert in this disease he or she should know all the options.
As for your disability insurance problems, again, you've got to be the one to carry the water on that at least for now while your husband is fighting to regain a modicum of strength. If you can afford an attorney, get one who knows disability insurance issues. If you can't afford one, contact your local bar association, explain your problem, and find out if they can refer you to an attorney who will help you on a no fee basis. Most bar associations have such contacts. I'm an attorney and though I've handled my own disability insurance issues, at one point I reached a level of such frustration with one of my carriers that I knew I was losing objectivity and hired an attorney to advise me, so even for professionals, some objective guidance is worthwhile.
Feel free to ask questions. There aren't many of us who really know what this is all about so I'm more than willing to answer as best as I can.
Harvey Gould