More than just a bag lady

Being on azathioprine, influximab and prednisone is helping to control this recent Crohns flare up. But unfortunately they work by wiping out my immune system making me more susceptible to all the bugs doing the rounds. I refuse to stay at home and be held hostage by these meds though- for me they are there to give me my life back, not to make me a prisoner in my own house, so the inevitable has happened and I’ve got a cold.  ‘It’s only a cold’ you might think, but with no immune system to fight it off this cold has made me pretty poorly. Yesterday I couldn’t get out of bed and felt so, so ill. I was coughing and struggling to breathe so I’m pretty sure I’ve got a chest infection too. But I can’t confirm that because apparently even being immunocompromised with a suspected chest infection is not enough to see a GP these days!  I spoke to the receptionist at the GP surgery this morning who told me that all the urgent appointments for today were gone (and this was at 8.25am, aft...

So today I went for my first influximab infusion as an out patient at the day case unit at The Treatment Centre. They needed to cannulate me as it’s given in a drip and didn’t believe me at first when I told them my veins were bad. After 3 nurses spent an hour having 3 attempts each in various places in my hands, arms and feet they then got the doctor.  Even using a paediatric cannula he couldn’t get one in so they called my gastro consultant to ask if they could use my Hickman Line to which the answer was a resounding ’NO’ as it’s too precious. If they didn’t follow the correct sterile procedures I could end up with a line infection and sepsis and back in the hospital and to be honest I would rather them jab me a million times than get sepsis.  So they had to call the anaesthetist to ask him to cannulate me. I had to go to the short stay ward  to see him and it took 2 of them half an hour to get one in. In my wrist! And yes, it hurt. A lot.  Back on the day case uni...

So in Rachel Reeves spring statement earlier this week it was confirmed that there will be massive changes to the benefits system including the way that PIP is assessed and changes to the health element of Universal credit.  As someone who is receipt of both PIP and ESA disability benefits I find this whole situation…  🔲 terrifying  🔲 baffling  🔲 rage inducing  🔲 disgusting  🔲 [all of the above] I honestly cannot believe that a LABOUR government is looking to balance the books of the country by taking money from some of the poorest and most vulnerable in our society. This is the sort of thing I would have expected the Tories to do but when I voted Labour I honestly thought that not only would they look after and protect the neediest but they would actually make things in our society better and fairer. How wrong I was. Looks like I’m going to have to get some ‘Fuck Labour’ merch to go along with my ‘Fuck the Tories’ stuff I already own!  Now I do b...

After everything that’s happened over the last 5 weeks not many days have been good days but today was. I will write a blog post about everything that happened but that’s for another day!  Today I went to pick up my new motability car and got to breathe in that new car smell. I am now the proud lease holder of this lovely Volvo XC40.  To be honest, part of me wasn’t sure whether to write a blog post about getting the new car with everything that’s been going on with the disability benefit reforms. There’s been so much written about motability cars on social media but a lot of it is misinformation and hate and that made me nervous to write this post. But I figured that most people reading it are friends and family and understand my need for the car. But for those that don’t let me explain a bit about how the motability scheme works.  I am lucky enough (or unlucky enough depending on how you look at it) to claim PIP- personal independence payment. This benefit is designed t...

This morning I saw my consultant on the ward round. I was excited to find out the plan to get me home later this week but it looks like the plan is a little bit different to what I thought… The gastro consultant had spoken to the microbiology consultant who said I need two weeks of antibiotics from the first date I had them. Depending on which antibiotic we are counting from (as I’m currently on three different types) that takes me up to either the 18th or 19th December. So far this was what I was expecting and so in my head I was thinking that I would probably be home for the weekend, just in time for the annual tradition of Christmas bowling with Bestie and her kids on Saturday 21st December.  But then he told me that we need to leave it 24-48 hours with no antibiotics and then do another blood culture from my Hickman line. After taking the blood culture we then need to wait 2 days (minimum) to make sure no bugs grow on the culture and only when they are satisfied that the line i...

Most people celebrate their birthdays with a nice meal out, a trip to the cinema or even with a few cheeky vimtos in the pub. What did I do to celebrate? I had a little trip up to the hospital.  The night before my birthday as I was connecting my feed I noticed that there was what could best be described as green gunk coming out around my Hickman line. Safe to say there should not be snot like stuff dripping down my line so I knew that I would need to get it checked out.  With pain all around my line and a full diary over the coming weeks I wanted to get it looked at asap as I simply did not have time to be ill or God forbid, have a stay in hospital, so I rang the specialist nurses first thing Monday morning and had an appointment to be seen later that day.  I went up to the hospital, had swabs taken of the gunk around my line and to be on the safe side the nurse even did blood tests to check for any infections in my line. While I was there I didn’t say anything about it ...