The past three days I’ve been poked for my precious blood. And each time, it’s been awful. The kind when they get a vaccutane ready, put the cuff on your arm and you just know, just KNOW that they will be suctioning out the blood with a syringe and needle, not being able to get a big enough vein for it to pump out itself out under pressure. It’s just another personal quirk I’ve gotten used to: being unable to give the phebotomist an easy blood draw. Each time, it was for something different: First lot was Crohns (CRP, ESR, FBC and LFT) then for Rheum (just Vit D, but awfully painful drawn from the same exact spot) and third was Gyno and hormone levels. I am full of bruises. Not the worst ones I’ve ever had but still, painful when I don’t need anymore pain.
So why all the bloods?
Well, Monday I walk out of work. I’d spend the weekend in denial of my progressing Crohns problems and it came to an ugly head whilst in the shop. I left and called my IBD nurse who said I needed to come to the hospital for bloods. Off I trundle with bf in tow, who is looking deciding pale and unsure of what is expected from this. I felt a little better after the bloods – despite feeling very faint and weak, not much different to normal then – and I forget about my bowels and joints and just get on sleeping. Fast forward to Tuesday afternoon as I’m sat with my new doctor – a lovely female Rheumatologist – explaining about my crohns, my weight and painful joints. She wants a Vit D blood test but is pretty sure I’m deficient and have inflammatory arthritis; something that only occurs when I’m going to flare, am flaring, or have just flared. A good, another warning system from my sick body, wonderful.
She also shows me my blood results. All my markers are raised, especially my LFT. Could this be the reason for all my tiredness? What has caused it? Is it linger Humira or Mercaptopurine? Knowing my IBD nurse will call, I spend all of my day off on Wednesday waiting for her call. She does, late afternoon, to talk bloods and treatment. In as many words, I’m doing okay. I’ve not settled down but it does take time for things to return to normal. What is normal exactly? It is not time for steroids again, can I wait to discuss a treatment plan until Tuesday with the doctor? What are my options exactly? Seen as Aza and its sister products have worked, I’m limited to what I can take without it getting biological again. What if I go back on the biologicals and it doesn’t help, or I just plato at this point? When do we step in and try something new again? How do I know when it is starting to become a mess again and ‘failing’?
I’ve so many questions for my doctor on Tuesday.
I’ve tried my best to put my stress to one side and just let things happen and not worry so much. But this, as much as try to push it to the back of my mind, it comes back to the surface and I worry some more. I don’t like not knowing, and this week is turning around but not by much. I still feel sick – I actually feel it this week, it’s not so invisible – and I just want to enjoy my week off the week after. I need my holiday for my sanity. I want to fight my Crohns, but I’m tired of being tired. And I’m tired of not getting any better from my attempts. One step forward, two steps back.