Thursday, 14 February 2013

Enough Is Enough!

Time for an update I think!

I worry that my blog sometimes sounds really repetitive, not much changes around here I'm afraid so more of the usual coming your way! 

The problem with not updating regularly is, that I can't always remember everything thats been happening. My memory is shocking and after 3 years of this and all my appointments etc kind of blur into one these days. 

If I'm honest, I feel low. I can't put it down to one thing thats making me feel like this, I just feel completely overwhelmed by everything. Not just health issues but life in general can be a bit of a challenge sometimes. Being ill just complicates things further. There are times in your life when you need to be on top form so you can be strong for others, and that's just how it should be, yet I feel like I'm failing my family because I just can't deal with any more! 

I won't bore you with the details of life's craptastic twists and turns but someone put a good word in for me and make it stop....Please!

Health wise, I'm tired of fighting. I am guessing that since I am back to a healthy BMI this is probably going to be as good as it gets... sound good? Nope not really. I might "look" better, I might be a little stronger but that doesn't reflect how I feel. I still can't eat, I still get pain and I still feel sick, that never goes away, no matter how much I want it to!

It's not just hard on me, its hard on my friends and family too, and there comes the added layer of "guilt and regret". When you fist get sick, you go through "the grieving process", what nobody ever tells you, is that you don't just go through it once, you continue to go through the 7 stages in a kind of permanent cycle!

The catalyst to repeating the seven stages? Every trip to the doctors, every consultation and every meal you have to WATCH someone eat! That is what get's you, but there's little you can do to avoid these catalysts! It's impossible to avoid any of these things because they are such a big part of your life...and staying alive for that matter! 

So which one set me off on todays rant? All three.

I had my NJ tube replaced a couple of weeks ago, during which time my consultant said she didn't want to do any more because it's just not fair to be going through tube placements without sedation, especially when they need to be done so often. She said that she would arrange for me to see the gastro surgeon at my next TPN clinic to arrange a surgical jejunostomy again (for meds).

So... I get over the tube placement, have the week from hell with my symptoms and turn up for clinic the following week with my list of questions.

What actually happened? I got rushed through clinic like jack lightening and my meeting with the surgeon consisted of a phone call between him and my consultant. I didn't get chance to blink before I was sent marching up to pre-op assessment with my paperwork! Both my mum and I came home wondering what had hit us, that lady is like a bloody tornado she thinks so fast! She is undoubtedly very clever but she is always ten pages ahead of where you are by the time you see her, which can be incredibly confusing! She said they would do the jej tube, remove the gallbladder and take some new full thickness biopsies, however, when I looked at the pre-op sheet, it said jej tube and gallbladder so I'm not sure on the biopsies was so rushed I can't recall much of the conversation!

I like my nutrition consultant, she IS very efficient AND get's things done but I think she sometimes forgets that it's not just a procedure, it's not all in a days work for me, and just because I'm used to the system doesn't mean I'm ok with it all. 

In fact that's why I'm NOT ok with it! 

I won't settle now until I at least get my follow up letter outlining what we talked about from her perspective because I don't have the foggiest!