My thought has always been, go get an education on the topic and do some real troubleshooting and experimenting. People could have marched for days and days to find a cure for darkness, but the result would not have been a single light bulb. It is a business.
Be that as it may, I always wondered, "What if I had that disease? Would I feel differently?" I guess not.
On the mpninfo.org site which is all the info and cutting edge stuff related to myeloproliferative neoplasms--f'd up bone marrow stuff---they announced that
September is National Blood Cancer Awareness Month
Yay. Why am I not overly enthused? No telling. I guess I'd rather it be "Kick arrogant, useless, pompous, disrespectful hematologists and oncologists in the ass month. And punch them in the nose too!!"
But, that is just me, I'm sure. And maybe the doctors who go nuts because of the idiocy of their less respectful colleagues agree. I know of at least one who does. But he's in Iowa.
So, part of taking matters into my own hands requires trying to educate myself a bit. Believe me, I do not pretend to understand or even try to nail down the biology and chemical factors in minute detail. I do try to keep up with treatments and diagnosis of specific subgroups among the bone marrow production disorders. That is what myeloproliferative means.
And I often worry that I am too resentful and hard on my hematologist. But then I look at info from conferences and such, all listing symptoms associated with various conditions, or percentage of people in that group with particular symptoms. This is the guy who said my symptoms were irrelevant. And the guy who forgot that half the problem is anemia, and also did not order labs even though cell counts and such are the big deal.
For awhile I just wanted to ignore it and not think. But then after that last visit, I saw little choice. This pompous caste system advocate from S.Africa would let people die before he would acquire enough humility to reasonably trouble shoot, or suspend his ego for ten seconds.
But to the point. Even though I have this rare disease. It was rare disease awareness month or week not long ago. Geez. Even though; I still would get no big thrill out of a T-shirt or people running around the block. How about making it legal to seek any drug or therapy that you choose to try? Things like that. Get the FDA, which serves mainly to facilitate pharmaceutical wars between companies and the public. If you are in then they help you. If you aren't then your product is forbidden.
Adults should not have to have permission to get pain relief. As it is, many are in horrendous pain but have minimal resources and their doctors are afraid of various agencies ruining their practice if they just do the compassionate thing. It is a sick, "Mother may I?" game that treats one set of adults as having the right to dictate and be the arbiter of other adults choices. And the majority of people seem ok with that. Just cannot help that busy body, pushy thing.
And again that brings me back to charities. Good cause or not, do not harass me for more money at the checkout counter. Do not push and cajole me at work, making it like you are so holy for being a pushy charity cop, and anyone who doesn't like it is heartless. Screw off!! Nervy ass companies. You want big numbers for the charity? Give me a raise or pay it yourself. Maybe my charity is helping the poor family down the street buy the kid shoes. Or food.
I tell you, the big charity game is bunk.
So, we are all now aware that there are a zillion kinds of blood cancer. Lots of people live longer than you will if they have the type that is well contained with certain dope. Some people do not do so well because of sensitivity or something; they have bad side effects, etc.
The thing is, you probably have worries of your own. I do not care if you are aware. What they should have is a month to raise awareness that you cannot be aware of everyone else's conditions of life, needs, or best choices. That would go a long way toward improving stuff for all.
Anyone knows that there are more avenues of research which can yield useful results than one could ever count or know. Often doing research in one area sheds light on some unexpected field. Nincompoops and pretend scientists don't get that.
So, my theory is that my symptoms more closely fit myeloid fibrosis, probably secondary, but even in that there are inconsistencies. The inconsistencies present with the polycythemia vera dx are consistent with the MF dx. It is crazy. But even crazier if you are poor and limited in choices. Believe me, the whole affordable health care debacle just lulls the poor and stupid to sleep while the bureaucracy of the allegedly free stuff systematically kills them off through incompetence and pure neglect. A sick citizen is of little use to the greater good. Believe me, eugenicists really are in positions of power. And they are not always right.
Sometimes they are, I guess.
For example, a husband and father in my situation is way more worth helping than I am. Assuming he is trying to help support and provide guidance and all that for his family, and carry his weight in the marriage. But this system of pretend medicine will result in many like that falling through the cracks. It is another part of the great pretense. Like the fiction of "Hands up, don't shoot me" . Never ever happened, but it became the battle cry. Facts are no fun.
Some symptoms of this stuff are confusion, irritability, and depression. What a big surprise. None of that here!!
There's an MPN education foundation that has big conferences and a lot of Mayo clinic participation and such. I want to hook up with those people. This thing of floating in limbo is getting old.
I am enthused. I see now that the expensive bone scan can easily miss earlier forms of MF. I think you have to be far advanced for it to show like that. But I guess no one wants a bone marrow biopsy. Stick a needle through your hip and suck out some juice. I bet my guy screwed one up and the patient got an infection and either sued or died, so he hates to go there. I do not want it either, but there may be no other choice. I hope there is another choice. Invasive procedures are...invasive.
I rambled on and on. But, at least it is here in case something ever happens.
You can be sure you may not feel much compassion from Dr Saven at scripps. And you will wonder if he even pulled the right file. However in DeMoines, Dr. Shrek--yes, that is the name-- think I spell it right--is a real prince and very sharp.