Living with JIA: my day (A rant! Sorry)

It's only 9.30am as I write this and once again JIA has already dominated my day. Today is not even a 'bad pain day' for Miss T . So getting up and dressed was relatively straightforward today and its just a case of remembering her routine meds. Whilst the suns still shining, I have to remember to smother her in high factor sunlotion and hope that it lasts throughout the school day. One of the side effects of her mtx injections is making her prone to sunburn.

Straight after getting Miss T to school I'm on the phone. We're still awaiting outstanding vitamin D blood test results from Great Ormond street hospital.  It took several attempts to get her core blood results a few weeks back but for some reason vitamin D results take ages.

The blood test was done on 3rd August. Still no sign of the vitamin D result. On the plus side I did get through to the person I needed to speak to straight away. I've been asked to phone back on Friday.  Initially I'd been told to ring again last week but as the results still aren't here then it's just as well I didn't.

Next it was emails trying to find out about hydrotherapy.  Miss T had been attending a local hydrotherapy pool on a weekly basis since her diagnosis of JIA 3 and a half years ago. Sadly that pool recently closed down and despite her local physio, her GOSH physio, her rheumatologist,  her local paediatric consultant and our GP all agreeing that she needs hydrotherapy, there doesn't appear to be another suitable pool to be found!!!

It's a crazy situation. I don't just mean nhs hydrotherapy,  we've been having to pay ourselves for her sessions until now and happy to keep doing so but there just aren't any suitable facilities which permit children for hydrotherapy sessions anywhere around here. It's been over a week of multiple phone calls and emails daily to try to find out if there are any other options for her.

Then it's onto next times blood tests. A phonecall to the children's ward - ive tried several times this morning and got an engaged tone. Eventually i get through only to be put through to a different number to someone who tells me to phone back again in 10 minutes. 

Time to email the community nurse to make arrangements for T's mtx injections for this Friday. A separate email next to the community nursing team secretary to order a new sharps bin as this one is getting full.

I'm conscious that we need to allow two weeks notice and I was trying to the in picking it up with the day we are there for bloods but now need to wait until I manage to get her bloods booked in before I know which date that will be.

Some happier texts to send after that making arrangements to meet up with a jia friend. So great to find someone of similar age to miss T going through the same thing. They are such great support for one another.

Household jobs to get done this morning - just the usual stuff that needs doing every day...washing up, clothes washing, putting dry clothes away. Every. Single. Day. And then it will be time to have an early lunch and get ready for work.

In between this, it's  back on the phone to get that blood test arranged. Would it really be too much to ask for them to offer to phone me when the blood results are ready or when the person who can book the blood test becomes available.

My frustration is growing that not only does Juvenile Arthritis dominate our lives directly with the impact it has on miss T's body and the medications and doctors appointments but that the inbetween times are also dominated by sorting things out.

I know that doctors, nurses, and hospital staff do their very best and are already stretched in so many ways. But So are parents of chronically ill children. 

So that was just this morning.  We also have physio exercises to fit in daily which we just didn't get a chance to do before school today. And the rest of the week includes another consultant appointment trying to get to the bottom of her mystery foot.  So evenings have been spent pulling together all her scan results, copies of reports etc to have them ready for Thursday for this new doctor to review.

I'm just feeling like an elastic band at full stretch at the moment and I know I don't have the liberty of snapping because my family need me.

Rant over!