Life goes on

[Helena303]

Blood test today and then Pharmacy for more Hydrea!!!

All I do is try to drink enough water every to keep my blood going.

So went to Karaoke Monday night.

Actually put some make up on and blusher. As had been looking a bit pale.

Had two double vodkas.

Got some compliments from friends.

It was good to push myself to actually go out and make an effort.

Sick of thinking I’m sick every day and being invisible.

[Pippa63]

Well done Helena. It's easy to sit back and think too much about having an MPN I do this myself because fatigue is my worst side effect and then I just can't seem to make the effort although having recently moved I don't know many people. Your post makes me think we'll I should try too !

[Helena303 in reply to Pippa63]

Yes thanks. I think the fatigue can get in way. Life goes on have a grandsons 2 and 13 year old granddaughter so enough reasons to be happy. I wish you well on your journey and good you have moved.

I’m hoping to move soon as my house has 3 floors. I want an apartment no stairs. But having not long been diagnosed I am sorting out things for the better.

[Tico]

You enjoy yourself Helena, don't think 2 voddies will do you any harm. I don't drink but life can't stop because of an mpn! Anything in moderation. Atb, tina🤗

[redumbrella]

Good for you Helena ! sometimes it is easier to just sit back and take the easy way out, we can all benefit from giving ourselves every now and then

All the best

Garry

[Cramp1]

Just my take on how I deal with it is by keeping myself preoccupied with other things. Do as much as you can and that'll take your mind off it whether it's sport, reading, seeing friends or anything. The more you do the less you think.

So keep going out and enjoying yourself

[hunter5582]

Way to go! Get out and have some fun. Might be better for you than the chemo! Hope your journey on HU works and provides the symptom relief you are seeking. You did not mention which type of MPN you are facing. I started with Essential Thrombocythemia nearly 30 years ago. About 6 years ago it progressed to Polycythemia. The real key to keeping the blood flowing for me has been phlebotomy. It has made a world of difference. Not only with PV issues, but also dropped my BP from Stage 1 hypertension to normal range. Being on HU means you must drink lots of fluids to manage the toxicity. Sadly, double vodkas don't count. Neither do double top-shelf bourbon on rocks (my preference). Rats! The doc told me that alcohol is OK in limited amounts when on HU. Gotta take care of the liver! Hope you keep on Karaoking, double-vodka-ing, and hanging with the grandkids. I am really looking forward to my next visit with my 8-year old granddaughter. Being a grandparent is great.

[Willympn]

Helen I am 68 next month and was Dz with PMF in October 2017 We live in Pender Harbour BC, Canada. In December 2015 I had to have a stent when I suffered from extreme fatigue. Apparently I had suffered a heart attack. When I presented with the same degree of fatigue, unable to climb a flight of stairs at one go, without collapsing, internist admitted me in to ER for transport to the cardiac hospital. No heart attack that time, but blood issues became evident. It was determined after a BMB, that I have PMF. After more than a year of trial and error of dosage I am now on Hu 1500 mg Monday, Wednesday, Friday, and 1000mg the other 4 days. As well I take 9mg of Warfarin daily. I get Blood Tests every 2nd week, and an included once a month INR to determine any changes needed in my Warfarin.

I also have a CPAP for Sleep Apnea. Between my Hematologist, Dr. Foltz, who is also the head of Hematology in St Pauls Hospital in Vancouver, and our GP, we are now living a near normal life. Although last summer I spent 5 days in ICU for Acute Pulminary Embolism I am back at work again, more training a replacement technician for our small family business , than ladder climbing myself. However I think my wife of 45 years would become concerned if I was to put on blush and go out for a drink. Keep up the Good Fight and Stay Visible!!!!