More of a Place Holder Than Anything Else
Fri., February 20, 10:09 AM
Warning! Do not read this if you are upset by bloody descriptions. It’s just that I haven’t written in more than a week, and I need to say something so that you’ll know I’m still around. Sort of.
I’m tired, draggy, wiped. Sure, all the mental reasons for fatigue remain, but there is a physical source as well. I have mentioned Hereditary Hemorrhagic Telangiectasia in the past, and here it is again.
HHT is, according to what I’ve read, “uncommon but not rare.” Supposedly there are some 200,000 people in the United States who are affected; over the past sixty-odd years, I have never met anyone who has it who wasn’t related to me. There is a wealth of information about HHT on the internet, but for my purposes all you need to know is that (1) unlike other bleeding disorders, this one is caused not by the blood but by the structure of blood vessels, and (2) in our family it manifests itself as “epistaxis” — that is, nosebleeds.
I have been able to control my bleeding most of the time until recently. I know that the problem increased for my mother and two of her siblings as they grew older. For me, there is an affected spot that I cannot reach; therefore, direct pressure won’t work. (Occasionally I can use some medication to stop it, but not all the time.) I also have been aware that ingesting too much iron will trigger a bleed — and then I have to wait for the spot to heal before I can try to rebuild my iron supply. So I am anemic. Meanwhile, the U.D. is upset, my doctors are upset, and everyone is suggesting solutions that I can’t accept. Transfusion? I have this vision of blood infusing into my arm and leaking out of my nose! Above all, I refuse to be treated by any physician who is not familiar with the disorder, because I have seen some… shall we call it mismanagement?
What I have done is to contact the local HHT Center (the first of several in the country) and to make appointments with doctors who know what they’re doing. I hope. First on my agenda is to get that spot repaired, if possible.
Next, I have to line up some assistance for my two kids who have the problem as well as for my niece. Over the years it has been very interesting to follow the lines of genetics. Since no one in our family has had the disorder unless a parent did, you would expect this thing to die out. Evidently it occasionally appears as a mutation, after which it would start all over again.
Even if you don’t see a post or even a comment from me, be aware that I am still reading. I hope I will feel up to a real post soon.
Food for thought: What does it mean, “it takes a village”? I always thought of it as stretching out one’s hand to help others. Instead, I see so many people stretching out their hands to see what they can take. I am beginning to feel as if this is Sodom and Gomorrah, and I shouldn’t look back!
