Frustration

Oh, FFS.

Can't get an answer from PCT about whether I can have funding to see Prof G in London. Can't appeal decision cos they won't *make* a sodding decision. Hate bureacracy.

Can't get anyone at local Rheum service to listen to me at all - if you don't have inflammatory arthritis or an autoimmune condition, you're too boring to treat, apparently.

Can't get a referral to someone to see about getting ring splints/some better wrist splints. Apparently rheumy shld sort it but see above re: complete disinterest.

Why is it so hard to make medical 'professionals' understand that sometimes, things won't kill you but nonetheless cannot, under any circumstances, wait an undefined period of time from 'four months if you're lucky' to 'forever. many, many years'. like chronic pain treatment, splints, adaptations, equipment, specialist referrals... ugh.

Currently chafing at the fact that there is information, advice, management, even treatment out there - but I am not allowed to access it because somehow I'm less 'worthy' of the effort than if I had a popular disease - one with big-charity support, like cancer, for example. If I had suspected cancer, I'd have to been seen within two weeks. Get something that won't kill you, but will just make you live out the forty or fifty years left of your natural lifespan *wishing* it did, and you're not important at all.

This is really upsetting me. I can hardly bear to admit this to myself, but I would like to discuss and consider the possibility of having a child with my husband.

However, I can't even bear to say the words, because from what I've read about EDS - and the fact that a few of my symptoms/history factors may well point to at least some vascular involvement, instead of 'pure' hypermobility type - childbirth could range from 'needs close medical supervision' to 'suicide: the long route'. It could leave me too damaged to care for my child. It could kill them, or me, or both of us. I need to at least have some idea of the possibilities and the balance of probabilities. I need to talk to someone who knows a lot about this, who I can trust, and get good, solid, reliable information and advice - and who I can trust to care for us properly if I did try for a child.

This should be a wonderful possibility. I should be really gleefully excited. Instead, I'm too apprehensive to even think about it loudly. All because my local NHS doesn't think I'm worth it. Because of money.

They'll give free nicotine patches to people who have been able to afford 20 cigarettes a day for years. IVF. Replace faulty breast implants that people could afford thousands to have fitted to begin with. Interpreters for people who've never bothered to learn the language, because someone else pays the translator. There are probably countless more examples that I'm too tired and angry and sick at heart to think of.

But there isn't any money for me to have even some chance at minimal quality of life for the next fifty years, let alone dream of having a child.