New diagnosis…
Some of you may already know, some probably not that in November 2019, I have been diagnosed with a rare form of blood cancer, called Policythemia Vera (PV). Just a month after opening The Yoga Lodge.
PV is part of Myeloproliferative Neoplasm. A group of diseases in which the bone marrow produces too many white blood cells, or red blood cells, or platelets. In my case it means that my bone marrow is producing too many platelets as a result of a gene mutation. That gene is called JAK2. More platelets than normal, without medication make you prone to blood clots, enlarged spleen etc. Not nice.
Before I got diagnosed, I had to go for a bone marrow aspiration. Basically they stick a needle into your hip bone (in my case) and they take fluid and bone fragment to identify gene mutation and establish proper diagnosis. It was the scariest day of my life. I took my pain killers, my pillow, music and my breathing with me. I remember explaining the doc who was waiting for me why it is important for me to face my worst fear. I was terrified of the pain. Obviously asked around and used dr google too. 🙂
Looking back, the idea of unknown was the worst part as the procedure itself was actually pain free. I got administered local anaesthetic and apart from pressure, I havent felt a thing. And she went back twice as she couldn’t get sufficient bone fragments. I was so proud of myself. It really was a big thing for me.
Doctors say that patients are more likely to die with PV rather than from it. However, it can develop into acute myeloid leukemia. I know, it sounds scary, and do not be mistaken it did hit me hard back then. It wasn’t easy to come to terms with the whole thing. But I did not want to dwell on it, or live the rest of my life in fear.
I have been prescribed a medication, called Interferon Pegasys, which I had to inject into my tummy fat on a weekly basis.
Platelets are under control, and I am doing just fine. Taking Aspirin on a daily basis became normal.
Reflecting at my multiple visits to A&E with different symptoms each time, there was no way of connecting the dots. Starting in 2017 I was fatigued, loosing weight, and sometimes my vision became blury or compeletly gone. It was frustrating at times. I thought that all of my symtoms were caused by RA. No, they certainly weren’t. I remember, I got into haematology by accidect. Someone cancelled. Thank you, if it was you!
I can say, that PV is under control. My body is responding well to medication. It is an amazing result.
So What Worked for Me…
– I looked for support group on facebook to ask all my questions and to share. (Unfortunately there is none in Ireland for ET/PV patients and their families)
– I went to therapy/counselling to dig deep and face it all. And of course trying to make sense of it. Therapy was hard at times and still is, but definitely a game changer!
– Kept up teaching. Teaching yoga helped me both physically and mentally. Probably saved me (again).
– Started to practice Yoga Nidra on a weekly basis.
– I do continously look after my self no matter what. I come first! I have changed massively on the selfcare front!
– Stayed positive!
If you feel that any part of my stories resonanted with you, please feel free to get in touch with me! Or if you just want to share, I would love to hear from you!
You are not alone!
Love, Niki
