Apparently it was my annual review.
I wasn’t aware of this until I arrived to the clinic, had myself weighed and blood pressure checked.
“… you won’t have to wait long, you’ll be seen straight away” the nurse told me.
Oh yeah, that’s great news, I said to myself.
Just before I walked back to the waiting room, another lady grabbed me and introduced herself as the Pharmacist. I’ve never been seen by a pharmacist before during my visits… she asked me about what medications/supplements I am taking and what allergies I have and jotted them down. She then sent me to wait in the waiting room.
Before I even sat down, the research nurse came to greet me. She always look very friendly, but she said nothing about anything else… She must be an introvert like me, I thought. She handed me a four-pages questionnaire that she wanted me to fill out; so I obliged.
Just as I was on the last page of the questionnaire, a young female doctor greeted me and asked me to follow her to the room.
She started by asking me how I feel… so, I said, I’m feeling pretty good. I told her about my progress whilst she nodded and jotted some notes down.
She then asked me about headaches.
And I told her, yea… I still have them, almost daily, mostly in the afternoon and evening; towards the end of the day.
She then moved on to the next question… which was; ” any rashes? ”
So, I showed her a little rash underneath my wrist… I told her it’s not itchy now, but I’ve started noticing it a few weeks ago… but it’s not itchy. Until last weekend. But it’s alright now – I said.
She replied; ” It looks like it’s drying anyway… ”
And then she basically moved on to the next question about my joints, told me that all my bloods look stable; though she didn’t really showed me the report, and that I should continue taking the same dose of meds at the moment, and have my blood lipids checked for the next blood test in 3 months.
I went along with her. But, before I go I asked her to go through my blood results with me; so she opened the file and told me briefly what’s happening. Then I asked her to clarify whether I have anti-phospholipid syndrome, because I can’t remember being told that I have… She checked through my history and told me I don’t.
It was probably the quickest review I have ever been to. I was happy enough to go home earlier and being able to do more errands or have a time for myself rather than sitting in the waiting rooms for 3 hours.
But I was left with a lot of things to wonder…..
As I was driving home, I thought…
I wonder if the doctors who see me have the same illness that I have, would they be just as obliging and not as curious and demanding? Would they just simply be content by the way that I was examined in my review? Or would they want to know more? Is there more to talk about there?
I was also very amazed at the acceptance of “normalcy” of my condition…
Yes. I am a 28 years old female who gets headaches and migraine every day.
Yes. I feel fatigue almost every day.
Yes. I have unexplained rashes and digestive issues which may be caused by the medications even though I am on the lowest dose I have ever been.
TICK. TICK. TICK.
Yup, it’s all normal. That’s what all patients with Lupus experience and I have nothing else to tell you. You are doing great and going along well so just continue what you are doing and put up with the symptoms that you have because it’s your life now.
She never said that to me, this doctor. She doesn’t need to. That’s what I get from her as I walk away from my review.
Is it normal though?
No it is not normal to have migraine everyday, to feel fatigue and have muscles aches and joint pains and rashes. I am sick and I can be better. I can be healthier. I can have NONE of these symptoms. And I refused to be complacent with my condition like this doctor was with my review.
Yes, I accept that I have Lupus. Because without acceptance, I would be in rage and depression going through this fucking pain and fatigue every day. So I accept that Lupus is my Kryptonite; but it does not mean that I will not do anything more to get stronger and think that all these things I am experiencing is NORMAL. Because it’s NOT!!!!!!!!!!!
Don’t be complacent with your Lupus life, folks. It’s a battle we all have to fight. But we are not alone. We have each other to understand the pain and frustration.
One other thing hits home tonight… the realisation that these doctors are just like you and me… ordinary folks who for the most part, are just going through the motion of their day, not really being aware of their profession and their role in the world as a “healer”….. to some of them, I am just that uninteresting, general lupus case that needs a standard, automatic explanation because they’ve done and seen this hundreds of time each week….. they might as well recorded this and had me push a button so I can listen to the recording (something that might surely happen in the not to distant future)
It is sad. It is sad and disappointing to realise this.
But you know what?
As lupies, we are warriors.
We take control of our own life, our own health, our own recovery and healing.
There will be, as there has already been, tremendous challenges and struggles, shit doctors, medical mistakes, mean nurses, selfish/cruel/indifferent friends and family members… but amongst all these load of crap, there lies a glimmer of hope that is shining like a giant ass studded diamond ring. And to these people, I say, HALLELUJAH!!!!!!!
Yup! Me, you and my tribes. We will march on to a healthier, happier life.
N.B: I have been more than Lucky to say that, my family members have been my Saviour, as they’ve took up the challenge of the burden of taking care of a lupie like me. Without my family, I will not be here today.