In June 2010, I had just returned from my leave of absence teaching in the Middle East. I felt great and revitalized from seeing another part of the world and was looking forward to sharing new ideas at school. However, within the year various health issues began appearing. I mentioned to my doctor that I had a chronic pain in my groin and thought I had injured myself somehow. I also mentioned that I was getting leg spasms, nausea, night sweats and irregular menstrual cycles that I thought possibly was the onset of menopause. He sent me for blood work but all I was told is that my blood pressure was high. As a self-described workaholic, I blamed it on lack of sleep, the regular pressures of teaching duties and home while working on my Masters, so I promised to get more rest and refused any medications for it.
Not only did my official diagnosis of Polycythemia Vera in 2016 come as a shock, but the news that I had been dealing with it for 7 years was the real bombshell.
A lot has changed since then. I responded well to the HU and to this day, I’m told my blood results are probably as good as a “normal’ person’s”. One of the hardest things to deal with was knowing I had PV for 7 years and no one could tell me this or look further into it. It did however relieve me that I wasn’t totally nuts pre-diagnosis. I was so relieved to finally be able to tell the people who had been there for me, what had been wrong with me.
Family and friends are such key supports for those of us with an MPN. I can only imagine what goes through their heads when we as patients have trouble grasping what is going on with our bodies. I know my husband at first had difficulty with my diagnosis, but he’s always been my rock to lean on. When people ask how I am doing, he simply says “she has good days and bad days”. That sums it up right? There are days I feel great and want to tackle the world but then reality sets in. I still get night sweats but don’t ‘wet’ the bed or have to change pj’s in the middle of the night! The nausea persists, as do the red ears but the most relentless one continues to be the bone pain. We’re not sure why I have arthritis throughout my body but it’s there. I’m currently on a leave as I need a hip replacement-the answer to the groin pain I initially complained to the doctor about.
Support is so important but so is advocating for oneself. I respect the doctors and all they do for us, but I know they can’t read minds. Like I tell my students, if you don’t tell me what is wrong, I can’t help you. You might not think so, but there are people out there who are listening to your every word, so keep advocating for yourself.