First Post/Background

At 18 I was a typical college freshman. Happily and healthily being the semi-irresponsible person I was supposed to be at that stage of my life. That spring I started getting lots of headaches and had HUGE bruises on my forearms. I went to my GP and after a brief side-trip to misdiagnosis-land, it was determined that I should see a specialist. I started seeing a hem/onc, and after a quick and painful bone marrow biopsy, and not so quick, almost as painful waiting, found out that I have essential thrombocythemia (ET). Big long words with no meaning. A quick trip to Google later and I was slightly more well-informed. Being 18, I didn’t take it terribly seriously, and didn’t want to feel labeled. So, what’s the logical thing to do? Ignore it and it’ll go away. Kind of like “if I can’t see you, you can’t see me”, the typical three-year-old’s hide-and-seek theory, applied to medicine. Unfortunately that doesn’t actually work.

I was first prescribed Anagrelide, and was on anywhere from 0.5mg/day to 7.0mg/day. I had lots of side effects with this it, headaches, heart palpitations, dizziness etc. If it could be found on the label as a possible side effect, I probably had it. I am lucky to be in the 50% that cannot tolerate it. So in addition to not wanting to recognize this issue in the first place, I was able to almost get away with not taking my meds by emphasizing how bad the side effects were.

After a while of not taking my meds on time, or sometimes even not at all, and having LOTS of complications, I came to realize that I was being pretty silly. Shortly there-after I got a new doctor who was more familiar with ET patients, got a new prescription and started taking my meds…almost regularly even!

I still had complications from time to time, resulting in pheresis, and dosage increases in my meds, but instead of being apathetic, and letting “whatever happens happen”, I became an active patient. Managing my health is not only the responsibility of my doctors, it is mine as well, and I became to accept that I could be a partner in my own health, rather than a passive victim of my condition.

I am now extremely involved in my treatment to the point where my doctors probably dread seeing me and my now-infamous binder. The binder goes with me to all of my doctor’s appointments – Hem/Onc, GP – doesn’t matter. The binder goes with. It has every piece of my medical info I can get my hands on plus questions I may have, plus articles I’ve run across that I want my doctor to look at, etc. I have accepted that this is part of my life. I have setbacks occasionally, but mostly I just roll with it.

When this started I was so afraid that I’d be labeled as “the sick girl”, that I made myself sicker. It took me a while to figure it out…but I finally realized that these diseases are only a small part of us. They do not define us as people. What defines us is how we handle the setbacks that may come along with it. 

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6 thoughts on “First Post/Background

  1. I just found your blog and read through it ..and I signed up to get future blogs and see that you have officially 8 followers. Now I want to ask you to keep blogging and telling yourstory because it is so helpful in this land of weird orphan diseases. I am much older than you…63 to be exact and went throughthe same stages as you when you were 18 and dint want to deal with it. Well, now I am, 6 years later, and reading your blogs really hit home. Thank you so much. Deborah .

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  2. I am super grateful to find your blog! I was also diagnosed when I had just 18 and it was super scary for me. My Hematologist had never treated someone with ET, and she had no idea how to deal with it so she gave me aspirin (my platlet count was 1,200k) so that just made things worse. I changed doctors and my new one was great, I started Hydrea (been on it for 4 years now) but about 6 months ago I started with anagrelide too because hydrea alone isn’t working. I changed doctors (again) and the new ones are studying my whole illness because they believe its turned to MF. I had my BMB done last week, and several other tests because to my surprise there have been some complications! My spleen has doubled it’s size and I have several blood clots in my liver (they have me one some anticoagulants shots), among other things. So it really helps to read your blog! Thanks for keeping us updated and personally helping me see I’m not the only one out there 🙂

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    • Welcome, Sasha! I’m so glad you found my blog! This can be quite an adventure, and it is very isolating at times. Feel free to chat or ask any questions you may have, I’ll answer whatever I can for you 🙂

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