I forgot to note last time: For anyone keeping score still, last time at the doctor's office, I had 222k platelets up from 202k. That's pretty good for 3 weeks' work. And my red blood cells are starting to come up. I think my marrow is producing more cells instead of just bigger cells as it was doing the past few months. It's been fascinating for me to learn things, and how the body was designed to compensate and renew itself if it couldn't repair itself completely.
Sometimes I'm keeping score, but mostly, I'm not, I gotta say. I'm just readjusting to a life that's worth living for so many incredible reasons. I think it's amazing what has happened to me since last November when I was first diagnosed with this ITP/aplastic anemia thing. It's too much to think about at once. I don't feel like getting the bends. And I'm still not far enough away to get a good look at it because I'm out of the woods, but still too close to the trees to see the forest.
Are those cliches or analogies? I don't know. But it's a good way to describe it all.
Lots of people have asked me, "What do you do now? Are you cured?" Well, I hope so. Seems this type of blood disorder was very rare, and all I can do it watch it from now on for the rest of my life with hopefully only bi-annual or annual checkups. I still wonder where the weekly mysterious bruises come from. But then I remember, I'm still healing up. But nicely.
While I am still on that cookieduster-growing Cyclosporine, the dosage has been steadily reduced. Which is excellent news. My doctor promised me that next time, I will probably get to reduce it even further. The Colonel Sander's mustache has gone away, but the Aztec bone-picker nails seem to be holding in there nicely. And when I brush my hair now, I can feel it's thickened and not one strand is left behind in my brush.
Which to me is all weird. My mom said, "One day, you will look back on this and realize how bad you felt and how sick you really were." She's right. She's always right.
So I guess that is my advice to you if you have Googled here, wondering about some strange and rare blood disorder you may have contracted. My mother's always right. "Fifteen years ago, you would have been dead from this. Thank your Dear Lord they have treatments to try now." And "Yeah. those pants do make your butt look big, but who cares? Here. Have a nice piece of pie."
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3 comments:
I have really enjoyed reading your journey (though i know not enjoyable). Your awesome attitude along with horsy meds have seemed to really help. I was diagnosed in Jackson, Ms/Mayo Clinic with AA as well as a couple of other rare blood disorders. I had ATGAM in Jxn on June 30, 2007. Today is October 30 and I am continually doing better. Atgam was an Atomic bomb, but wow does it work. My blood work looks good now and Im so thankful. Good Luck with your Journey and hopefully you can get back to some normalcy soon...whatever that may be!!!
Hello, Chase! Thank you so much for your post -- I would love to know more on how you are doing. ATGam is hard and the meds afterward are, too, but they are worth it. "You have to feel better to feel bad," my mom always says. Yes, the atomic bomb ATGam treatment can reset bone marrow and reboot platelet production so well that the next thing you know, you'll be back outside and slacking on the blog posting like I have been!
Let me know how you are. I know the answer is "better and better."
Hi-Well, you are right, the cyclosporine part is not fun either but the docs told me i could lower my dosage today. My bloodwork has been steadily improving over the last 4 months. Im trying to walk a mile or 2 every day. I tug around my huge 7 month old so at the end of the day, i'm still very tired. are you 100% now? I also feel a little anxious but I guess thats why they gave me Ativan to take! Ive had a positive attitude throughout knowing that I wouldn't let this AA get the best of me!!!! Im so glad to hear you are doing so well!!! Did it take you a while?
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