Day 5: Sodding iloprost AGAIN, some happy news for a change and a snapshot of M…

Started an iloprost infusion yesterday as a temporary measure until the rituximab arrives and can get started (few blood tests etc. that have to be checked, not least now including that bloody swab from last nights disaster of an experience) – check how pink it makes my face!! Quite amazing how many people see the below or similar in the past and say how well I look; in reality, all of the blood is being forced to the surface of my face, I am roasting hot and sweating, have a belting headache and quite desperately want to murder anyone turning on a fluorescent light anywhere near me 😉

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I started the five days of treatment yesterday (Day 4) before having that horrendous night, which I spent weeping and snotting all over everyone. It is basically a six hour infusion, given for five days through a cannula and is not my friend. It dilates all of the really small blood vessels – so in the short run counteracts what the cryoglobulinaemic vasculitis is doing as IT damages and inflames the inside of those vessels. Long term though, it is doing nothing to stop the disease process and is basically being given to me as an emergency measure due to the state of not only Death Toe, but the several other ulcers forming on fingers and feet at present. DESPITE the methotrexate and steroids. SOD OFF DISEASE, I WANT TO FROLICK AND SHENANIGATE!!

This is what I was in for twice already this year and I really don’t enjoy it, as previous wafflings will testify. Once you get to the higher levels of flow it is like being plugged into a migraine machine – see very first ever ‘The Adventures of Death Toe’ post! I am getting better with practice though – managed top rate yesterday for hours and finished a whole tube! – and today because I was so sleep deprived from last night, I was loaded up with oramorph and left to sleep through the vast majority of it and again got to five and finished there 🙂 The achievement with this, is that for the time spent in migraine land and for the cost of the drug and treatment, I am getting as much of it into my body as possible. I am nothing if not efficiency driven 😉

Anyway, after last nights depressing vent and gross pictures, designed to sift the weak from the avid Death Toe fans, I thought an un-hospital stay related and slightly more cheerful bit of waffling was in order…

As far as I can decipher from a very short and vaguely worded no-reply email, I have had a blue badge approved and on its way!! Probably – nay, certainly! will be at home before I am! LIFE CHANGING NEWS EVERYONE!

It took me a while to summon up the courage to apply for one and I had expectations of extra medical examinations and evidence being required, but this doesn’t seem to be the case, presumably because I drowned them in two years of appointment letters and discharge summaries. I also waxed eloquent about how crap it was not being able to do ANYTHING and how a blue badge would make a hell of a difference to my currently rather restricted travelling capabilities 😉

Apart from  when I can’t really walk (now all of the time!) and use an incredibly garish multi-coloured stick (recently dubbed Disco Stick) I don’t reckon I ‘look’ disabled. But then that is exactly what grinds my gears. Even being very firmly medically, legally and practically disabled myself, I STILL have to override a pre-programmed idea that there are any set rules for what disabled looks like, even when applying the term to myself!

This is despite having once spent many hours in Germany one summer, when it was mid-30s outside and stifling inside, writing a several thousand word research essay on exactly this subject. I remember it pretty clearly, as it had started as a simple assignment and became more and more interesting, as I realised how naive and ignorant I was with regards to a huge chunk of society. I know writing that essay made me more considerate and much less disposed to making judgments from then on, but at the same time I assumed (in a young, immortal, horribly healthy kinda way) that I was not disabled and therefore never would be. Less than ten years later, I can’t bloody walk without a stick and have bits of toe falling off 😣

Kath’s lesson of the day being don’t bother making any judgments about anyone; you don’t have a bloody clue what they deal with or what they are very adept at hiding from you… Yet equally, you would be wise to appreciate that this doesn’t come naturally to most people!

 

I went for a walk down the corridor with M before, partly to remove her from our room doorway, as there were visitors and people trying to talk. She is in her chair and held my stick whilst I was very slowly pushing the chair and using it to hold me up. We stopped at every single room down the hall to have a speculate about the inmates and interspersed this with a very cheeky level of banter with the staff – she gets away with absolute murder 😀

 

M – as we are setting off on our travels: “Right, lets go. Including that little lady behind the door, come on – lets do this properly, come on, lets get these legs going… Don’t be shy, we all started off rubbish, I may be winning, but that’s because I practice every day. I PRACTICE EVERY DAY!”

We then also had a lot of singing of the favourite, which is Ave Maria – still ongoing, at least five hours later – she is in a proper sing song mood today! This then turned into Feed the Birds… Which then turned into directing a yoga class… and then a competitive singing class with her taking both parts, between Ave Maria and Edelweiss.

Leaving M’s room: “Now try and keep your knickers on, there are a lot of them out here just waiting to pounce – ALWAYS KEEP YOUR KNICKERS ON!”

…and finally, just now, hobbled out to go brush my teeth to find her having a doze in her wheelchair outside our room. Upon seeing me coming, she mutters “Oh no, not another bloody cripple” 😀

2 thoughts on “Day 5: Sodding iloprost AGAIN, some happy news for a change and a snapshot of M…

  1. Peggy says:

    Hi Kath, continue to be amazed at your courage, your humour and your willingness to record all this!! Feel I am beginning to get to know you and have so much admiration for you!! Wish you all the very best!! I’m so old -could be your grannie!!!!

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    • Hi Peggy, I am glad you are enjoying following this – I always used to write for myself as a form of mental therapy, but this is the first time I have ever shared anything to this extent, so the response has been overwhelming and wonderful. In terms of courage, I am a bit of a wet blanket at the moment and am quite constantly scared and having little meltdowns whilst in hospital, but recording it is helping me cope with it. Also alleviating some of the boredom! I am younger than the average age for vasculitis to have kicked off, but with a disease like ours, I don’t think age has come between any of us in terms of supporting each other has it!! 🙂 Many thanks for the comment and all the best xx

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