07 December 2015

Preparations for plan D (or was it plan C) are in full swing and not as straight forward as expected. After almost six years of running this small business enterprise of living with a chronic illness, I am still at the beginner's stage it seems. This morning, when I told one of the many perfectly polite but incompetent (believe me, I can judge that by now) creatures on the hotline of my health insurance that I want to order a personal assistant, she laughed her merry little laugh until I told her that I was serious. I listed all the paperwork, the travel arrangements, the referrals, the appointments with the experts, the endless lab tests, the parking for godssake, etc. 

Well, she told me to get a grip and try yoga. If I enrol in a class before the end of the year, I can apply for a 50% discount provided I fill in forms 17a and 412b which I can download and print out myself before I send them by post. Processing time is only 3-4 weeks, she promised.

I assured her that yoga was on my list of future treatments but that for now I was scheduled for my first day of chimeric monoclonal antibody infusion (a what? she asked) and that needed to figure out how to get to the clinic and back without driving a car or public transport as I have been told that I will be a) too nauseous and b) too sleepy for either and considering the distance . . . but she wouldn't hear of it. Yoga it is. 

Or should be. But I am not calm enough. I am all nerves and expectations and what ifs. There are people, experts, who think I have found gold and who believe that I will be health reincarnate with this treatment. Others are a bit more tsk tsk tsk plus the frown. I try not to expect anything - ha! This is of course a childish attitude. So no, all I want right now is healthy gums. That would be enough. No more aching bleeding gum tissue. That would be my idea of heaven right now.


  1. It's not childish to be angry when someone on the end of the phone doesn't listen - and then insists you want something you haven't asked for. It sounds very grown up and healthy to me!

  2. Great song. And I don't think you're asking for too much. I hope your (outsized) dreams come true and that the insurance company -- well -- goes to hell.

  3. Go after them, woman! But how debilitating it is to deal with these idiots and especially when you're ill and not at your best.
    What a world. What a world.
    May Plan D work miracles.

  4. I hope you get your personal assistant so that getting to your treatment and back is absolutely handled, and not something you have to think about on top of everything else. My mom has just had her fifth monoclonal antibody treatment for her recent diagnosis of Follicular Lymphoma. She has handled it very well. My siblings and I have been taking turns sitting with her through the 4-6 hour infusion. She has one more in January, and then a follow-up PETscan. The CT scan in October looked very promising, so we are hopeful. I wish the same good news for you. Take care, stay tough, and don't put up with incompetence, even when it's polite. Thinking of you.

  5. I wish that for you, too. Healthy gums!!!

  6. Thank you! The idea of a personal assistant, someone who will wave a magic wand everytime I need to deal with the logistics of my chronic illness business, is only a dream. No such thing exists in our socialist health system. Instead I have to fill out forms and get doctor's certificates to prove that I am not a fraud but indeed a sufficiently needy sick person.
    But I'll keep on suggesting it every time I'm on the phone to them. They still think I am joking.

    Robin Andrea: I have been reading about your mum all along. My treatment schedule is two sessions 14 days apart every 6 months for the next eternity. Hopes are that b-cells will be sufficiently inactivated to stop them from being the autoimmune bastards they are at the moment. I think my dosage will be somewhat lower than with your mother's diagnosis or at least will eventually be lowered. Frankly, I have no idea.

  7. My very best wishes to you for this treatment.