Is It An Obligation?

It's a stock photo. My nurses all wear purple gloves!

It’s a stock photo. My nurses all wear purple gloves!

I finally go in for blood typing today so I can get my transfusion on Thursday. It’s been a crazy ride getting to this point, as those of you who follow the blog have read (if you don’t know, read the last two posts before this one and it’ll catch you up some). It seems so strange to me the restrictions and regulations this hospital has and how they treat patients. I realize that they can’t go handing blood out to just anybody, but when a person clearly has all the requirements for it, and the symptoms and blah blah blah. What a strange experience.

But more than that, I find myself a little hesitant about the transfusion. Most of the things we put in our bodies come from animals or plants–we don’t think a thing about it, you know? I take a thyroid medication that is a natural dessicated thyroid. Mine comes from pigs. Some of the thyroid supplements come from cows. We eat pork and we eat hamburgers and steaks, so really, medicine from animals doesn’t do a lot to ‘bother’ me. I’d much rather a healthy animal who is going to be killed for food, that he or she be used in full and there not be waste. Like the Native Americans who honor the animal who gave his life for nourishment, and then they use every part of the animal in some way. I like that concept, if animals have to die for our needs. It makes it more… palatable, I guess. Morally, there’s a part of me that wishes I were able to be a strict vegan vegetarian. Alas, I cannot. It’s not who I am. (more…)

Broke the Streak


This was the small ‘test’ bag of iron they did to test and make sure I didn’t have a reaction of any kind to it before they brought in a HUGE bag of iron to infuse after. I fell asleep and forgot to get a picture of it!

Well, was back in the hospital on Monday, and they kept me for a while. They did blood work and then more blood work and then more blood work. My hemoglobin was dropping and I was laughing at them, telling them if they’d quit taking blood from me, I might actually see my hemoglobin increase! One of the doctors apparently doesn’t have a sense of humor, ’cause they tried to explain to me how that wasn’t the reason and all, but it’s like–joking, people! Just joking.

Usually, I’m quite eager to get out of the hospital. I am usually chomping to get home as fast as possible. This time, however, I was questioning why they were sending me home. My hemoglobin was in the 7s and it was still dropping the day they released me. I was still bleeding too, which means my hemoglobin will continue to drop–the anemia is pretty bad… and they were sending me home. They hadn’t figured out why I was bleeding yet. They hadn’t even really confirmed where I was bleeding from and yet they were sending me home. I was still weak. I was still shaky. I was still dizzy. I was still soooo tired. And they are sending me home.

WHY NO BLOOD? (more…)

Now, The Truth


So yesterday, or maybe it was the day before, all the days are blurred right now, I posted about going to the ER with a nosebleed that just wouldn’t quit. I talked about the doctor and the epistaxis kit and the blood work and the funny little thing they put on my nose and all sorts of other things, in a very matter-of-fact way, and relayed to you the information about what they did to me. I tried to be as upbeat as possible, given a bad situation, and the truth is, I did sort of laugh all the way through it while we were there–the doc was great for helping with that. He was a riot.

But there’s more to the story I’m not telling you.

What I didn’t tell you was what happened after I left the hospital, that was more traumatic to me than anything that happened at the hospital. (more…)

Through the Nose (and then some)


(warning, possibly graphic images are posted here) I realize that some of you are going to gripe at me about this–lecture me about how I should have done this differently, and you mostly certainly wouldn’t be wrong. But before anyone tells me that I should have made better choices, I do need you to understand: This isn’t a normal situation. This isn’t like a normal person who only gets sick once in a while and then something major happens and you, of course, go to the ER. With me and people with severe chronic or life-threatening diseases, there are two changes to how we go to the ER. First, we go more often than ordinary people for some things, because the little things that don’t bother you much at all when you’re stronger bother us a lot worse. And the second is, we often don’t go to the ER for things that might usually send you to the ER.

For example, chest pain is a normal experience for me. I have PH. My chest is going to hurt. There’s really nothing I can do about it. If YOU get chest pain, you should go to the ER immediately. If I get chest pain, I have to consider if it’s the same kind of pain I usually get or if it’s a new pain or changed any before I go, otherwise, I’d be there a couple of times per day. Plus, chronically ill people have enough medical appointments and stuff to deal with, we try to avoid adding any extra whenever we can do so. (more…)

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