About

Hello and welcome to my little blog here, and to what I like to call the “Reluctant Members’ Club”.

In this blog I’m going to be sharing my experiences, thoughts and feelings about my life with an MPN.

For those of you who do not know what an MPN is, I’ll briefly explain here. MPN stands for Myeloproliferative Neoplasm. Basically, this means overactive bone marrow (for a more in-depth definition check this link. There are 3 different MPN diseases, ET (Essential Thrombocytosis), PV (Polycythemia Vera), and MF (Myelofibrosis). I was diagnosed with Essential Thrombocytosis at the age of 18. I’m one of the lucky patients for whom this is not a genetic form. (2-3 out of ever 100,000 people.)

  • ET, the bone marrow produces too many platelets,
  • PV the bone marrow produces too many or several different blood cell types
  • MF, the bone marrow actually becomes scarred and ceases to produce the proper number of blood cells.

These are just very rough definitions, for more information continue reading my blog, and also visit

  1. http://www.mpnresearchfoundation.org
  2. http://www.cancer.gov/cancertopics/types/Myeloproliferative
  3. Google search *

 

Feel free to subscribe and share. Comments, feedback, and your own stories are always welcome!  We may not have chosen to be members of this little “club”, but we can at least share our stories, and be there for one another.

 

*Please, when reading information found on the internet (including my blog!!!!) please thoroughly research everything, take several deep breaths, and take everything with a  shaker of salt, and never make any treatment/diagnosis decisions without the consultation of a specialist (hematologist/oncologist).

 

 

 

11 thoughts on “About”

  1. loved reading about you, I am alittle older (ok, alot 48, but look 35), I identify with not looking sick but feeling like shit, I take Hydrea, Plavix, synthroid, I had a cancerous tumor, thymom tumor in the thymus gland it was stage 1 cancer and I had a blood clot in 02.I was dx in 01 with et, and it did progress to myelofibrosis, I had also my gallbladder removed, and in jan the wires from the thymectomy popped (dont ask) they had to take out 4 out of 5 of the wires. Now i am better, but I have stomach problems. Is seems its always one thing or another and I am a divorced single mom with 2 kids 17 and 12, my x husband thank god is very successfull, and pays for everything and my medical insurance and I dont have to work, i am blessed, but, he always puts down my illness, and hates drs. and think they are killing me. The most annoying thing is that because I look good, I look like the picture of a healthy woman, so when I get tired or im just not feeling right people think that what am i talking about you look good. Do I need to wear an oxygen mask to look sick? I use to go to the hem with my file then they went paperless, I still get copies of everything and I do leave the folder in my car and when I travel I have alot of meds to take so I take my file with me. My latest bmb and my letters from my drs. of my illness. I relate to you and keep up the good work, and keep investing everything you can about your health. you can write me at mahlerstacey@aol.com. Talk to you soon. love, stacey

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  2. Hi Lina
    I loved reading your blog and have just started my own here in Australia. I am 51 and a very positive person who just happens to suffer from MF. I was diagnosed in April. I am happy and healthy and make the most of every day.
    Will be keeping in touch with you.

    Chat soon
    Jenni

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  4. How do I subscribe to your blog, or did clicking ‘Notify me…’ accomplish that? Curious where your blog went after July 2015 (user error 🙂 I love all that I have read because you keep it real and I am new in this MPN world and hunger for ‘real’.

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    • Barb, welcome! I apologize for a lack of blogs…I took a 6 month hiatus..didn’t plan on it being 6 months, but alas, it was. I am back now though, and planning more blogs. Thank you for writing, btw. It was your comment that reminded me I needed to get my rear in gear and start writing again!!!

      Talk to you soon,
      Lina

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      • Lina, thank you for the reply. I am glad you are back…unless…this puts added pressure on you to maintain. You really are a gifted writer and if you can put that talent to use off and on, for the MPN world, it will be a blessing to the readers. Thank you for your personal email, I am going to add it to my contacts, brave of you to share it and much appreciated. I will try not to take time away from your creative writing for the blog, which will benefit so many, though I might ask a few questions here and there as I am a bit ‘lost’ in this new world I have entered, unwillingly.

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      • Worry not, Barb, sometimes a little pressure is required to get me motivated! I am back, I’ll be blogging right now, as we speak and I hope that what ever I may ramble on about here, may help you find direction.

        Welcome to the “Reluctant Member’s Club”. Feel free to ask any questions that you may have, either here, or in e-mail! I’m here for ya, girl!

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  5. Tried to confirm in email sent to confirm but it stated it was unable to confirm. Hope this comment will result in a 2nd chance…

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