Now, when did all this start?

Hello there. I’m sure some (most) of you are my family and friends- (Hi Mom!) But I am hoping that after some time that some of you aren’t- so welcome.  This has been a “change your life” kind of 6 months… and not the kind of change that most people can even imagine. Cause see, I am one in a million. No, really I mean it. I feel fortunate not to be alone, I have met about 2000 others of “me” (still pretty lonely on the grand scheme of things). I am also a healthcare worker, (nurse practitioner to be exact), nurse educator (no quizzes or NCLEX like questions, I promise), and I am battling a disease that is not well understood (I’ll add that I’m a former PhD student – you will see me pull in research from time to time and hopefully explain it,  so I want to lend a little credibility here- and my hubby DID finish his PhD, so sometimes we will explain it together).

My objective: to raise awareness for my disease and those who suffer from it- HLH.  Hemophagyocytic Lymphohistiocytosis (yes,I think I spelled that right), and to reflect on what I have learned, explain how I understand the process and it’s affect on me (see above- a nurse). So get ready for some heart tuggers and chemo-induced fun and frustration in a world where very few have traveled…

Here we go…

So as part of every office visit to any health provider, they are required to collect a “history of present illness” or HPI. This is essentially how the provider gets paid. The more questions that we ask, the more money we can collect- it’s part of how the insurance company determines whether things are medically necessary and all that jazz.

In December of 2016, I had some nausea, heartburn and general complaints, but no real issues; however something was nagging me. I didn’t feel quite right. I was tired, out of breath and nauseated, not anything that stopped me, but just made it harder to BE me. This is December though- CHRISTMAS! I have 3 kids- we are in full holiday mode, who isn’t exhausted? This is like a first date, so let me explain a little bit more about me… I am attuned to my body. Maybe moreso than average (wouldn’t know- cause we have already established that I am not average). I exercised daily, never smoked, drank or did anything that Nancy Reagan said that we shouldn’t. My white sugar was limited, I ate raw fresh fruits and veggies everyday, chia seeds, basically the person that people made fun of on Facebook.  Guess what-I loved my life and I had just turned 40, prime time! I was reaping the benefits of this wellness (go back to the “make fun of these people on facebook” comment). One other small thing, but it ended up being the red herring for at least a month, my urine was dark. I work at an Urgentcare facility, so I had checked my urine a couple of times and I knew that I had blood in my urine- not always normal, but sometimes normal in a pre-menopausal (still having periods) woman. So my family doctor, decided let’s draw a little blood work…

I wouldn’t be worried

I waited a couple of days to get my blood work done because really I wasn’t too worried about it. I felt better, Still had the same issues, but overall, was feeling a bit better and it was Christmas…. blah, blah, blah. I saw her on about the 10th of December, she called me on the 14th.

Doctor- “Hey, Demara. How are you feeling? I got your labs back….”

Me- “Feeling about the same, but no worse….”

Demara- “I wouldn’t be too worried, but your labs are abnormal…. if you are feeling better…. we will recheck in a couple of weeks, see where things are…..”

So let’s review labs and what they can mean-

My WBC (white blood cell count) were about 1.8- pretty low. BUT this shift to low can happen if you are fighting a viral infection or recovering from something.

My RBC (red blood cells) were 10 once again… a little low. BUT not abnormal- especially in that pre-menopausal (still having period) woman.

My platelets were low- these are the little pieces that cause your blood to clot…. once again, this can be abnormal/normal- considering the other things that were abnormal in my blood. If a virus or other infection attacks you- it is going to shift all of these things to the low side (there are times when it goes the other way, but stay with me here). This was pretty low, but even as a healthcare provider, I was not worried, I try not to worry (oh stop me… but we will get to that)- I would have rechecked… treat the patient (who is feeling better) not the numbers-  but hence we start.

Let’s add this disclaimer here- this in no way should be taken as medical advice. The story here I have written is mine and I claim responsibility for the medical decisions that I made with my medical team- but I don’t claim responsibility for you or yours. Go to your family doctor if you feel things are wrong and keep looking for answers! Someone has them.

Second disclaimer- I am 6 months further into this and currently undergoing chemo. My brain is slow, my fingers don’t always type well, I am weak and I don’t always type well. Spare me.