Physio update

It's actually more of a non-physio update at the moment.

3 weeks ago I was forced to stop doing my physio sadly. The pain was unbearable and my range of movement was getting less and less. It was pretty obvious to me that the inflammation in my shoulder was getting far, far worse.

The inflammation has now spread down to my elbow, wrist and into my fingers, as well as up into my neck and down either side of my shoulder blades. I've been really miserable with it so not very inclined to write much.

In desperation I been trying to navigate our NHS. My rheumatologist has left the country after what I can only assume was a case of 'not being able to take any more' working in the NHS. I really don't blame him. He was wonderful for so many years but I've seen him become more and more downtrodden in recent years.

The substitute rheumy (while they try to recruit to our less than desirable health board) was awful. I saw him 6 months ago with this same problem and was told that he wanted to see me off medication to see 'just how bad it gets'!

I didn't come off medication as I already know how bad it gets. However, I've ended up in a really nasty flare despite being on medication. I'm also now overdue my 4 month check to see how bad it got.

I've been fighting to see a GP for numerous weeks too. I desperately need a steroid injection into my shoulder joint. A very unpleasant injection but also now very necessary to halt further progression. It's taken 3 weeks to be seen by a random GP, who isn't qualified to give these injections. The receptionists really make life more difficult than needed.

The GP was very nice but what she could offer was also limited. She did, however, book me back in for Thursday this week with the *right * Dr who can do the injection for me. She is also trying to refer me to another rheumatologist in our health board. Fingers crossed.

Why the receptionist couldn't book it for me 3 weeks ago I have no idea. It's a joke the way things are being run now.

I've even been looking to see if I can access treatment in a timely manner by going privately. Sadly, the private rheumy is the same one as the one I don't want to ever, and I mean ever, see again.

When I looked into the private GP service I found that sadly they are only allowed to refer me for private tests, treatments and private consultants. I simply can't afford that as the testing alone, without the cost of medication is simply far more than we can afford.

In a last ditch attempt, I looked into medical insurance again. However, none of them will cover anything pre-existing (outside of employee insurance) and everything I have or might have can all be refused by assuming it is another part of autoimmune disease.

Interestingly, private cover for the whole family (without any pre-existing) was less per month than hubby (and I used to pay) in National Insurance Contributions. It was the same when I paid for medical cover while living in California as well.

Right now, I'm stuck at home in tremendous pain and incapable of sleeping at night. I swear that there is no possible way to get comfortable without causing more pain when it's your shoulder (and all connected joints) that are flaring. No matter how I lie, sit or stand it bloody hurts!

I know I've got more to go through yet but I am hoping that the steroids will calm things down (after the 3-4 days of enhanced pain) and then I'll be able to resume physio. It's my right arm and I'm right handed. I have got to get better.

Finally, I've made the decision to stop taking my Cimzia medication (an anti-TNFalpha injection) as it's obviously not preventing flares as it should be and since I've been on it my liver function is getting worse and worse. I'm not going to keep destroying my liver (I don't drink, smoke or eat processed foods so it has to be medication) when I'm not getting the clinical benefit that I should be.

I guess I'm going to be in a rough way this year while I try to fight a broken system and find a reasonable Dr to oversee me. That is one who looks at my shoulder when I tell them I can't use it, instead of x-raying my hands and feet. Also, a Dr who can tell me how any new medication they want to push on me works. Hell, they can even tell me in medical jargon as I speak it! I was appalled that he was pressuring me to take a new-to-the-market drug when he didn't even know how it works. I was royally not impressed!

Meanwhile, I'm continuing my clean eating and quest for simple living in a bid to reduce the number of flares that I have. My ultra clean diet is helping me feel better in myself but I suspect that the flare was already too advanced to be reversible. I've always been fairly resistant to treatments for some reason so I believe that it is even more important for me to do everything in my power to help myself.

In fact, I can smell tonight's chicken and herbs in the stockpot cooking. I can honestly say that none of us have ever eaten so well and such tasty foods. Hubby and Missy often tell me that dinner was restaurant quality. It's become a necessary hobby for the three of us and our repertoire is ever expanding.