So, Im on a cooking trend – trying to make myself nice food, put a bit of effort in and enjoy the rewards! and so far? YUM!
I have found over the weekends if I make a dish that lasts several meals, it means that when I am more tired over the week I don’t have to cook – last weekend was the worlds best macaroni and today I just made beef Cannelloni. Both were a suprising success!
I just think I am quick to blog when something goes wrong or I need to rant and moan, but heres a much happier update- I really can cook 😉 and aside from that I can enjoy cooking and the food that I prepare and eat without worrying about Crohns. If I am loving it I can have a second portion (within reason!) I can eat fruit and veg, and more red meat without worrying. I can cook what I want, when I want, and I am making full advantage of it!
Hope you have all had a lovely weekend – heres hoping the weather is better next week!
And it strikes again…
Spotted this as I was scrolling through the news earlier today – always alert for Crohns-related articles! (How sad does that make me sound!)
I don’t know if it is just the fact that I am really tired (and yes, a little hungover still) but it really annoyed me how the article made Crohns Disease out to be not a big deal:
“Whatever I have, the doctors have told me it’s treatable and the worst-case scenario is I’d have to make some changes to my diet. It might even just be a really nasty virus.”
I completely understand that this was before the final diagnosis was made, but what makes it kind of sad for me is that this article is highlighted on the news because of WHO it is about, and not WHAT. Don’t get me wrong I would never wish Crohns on anyone, and I feel bad for Sam joining the ranks of us who know the battles that are probably coming her way – but in my humble opinion the article could have been used a bit more as an informative platform about the disease, as a way to spread awareness. It is an embarrassing and hard to broach subject, so those celebrities that are in the spotlight that can shed light on the issues that many of us face could be a perfect way to increase knowledge and perhaps funding in the area. My thoughts are with her in the scary time of just being diagnosed, and I hope that she recovers back to her new normal as soon as possible; but I do feel like if anything the article makes the disease out to be an easily resolved solution – a bit of soup for a while, some rest and then diet changes with this disease that according to them is treatable…treatable?! I would love to meet the (ahem) qualified doctor behind those remarks- because out of all the specialist I have ever met they have not said that. No, unfair maybe – they say the symptoms can be managed and try to reinstate a normality into my life, but “treatable” to me is often inter changed with “curable” and that is not the case. Maybe I am being moany, maybe I am being unfair (please, tell me if I am!) But I really think the article makes it off to be too light hearted and missed a brilliant opportunity to make her a figurehead or spokesperson for the disease. I wish I had a way to talk to her, to a wider community of others even further than this blog.
Let me know what you all think
Does anyone actually know the answer to that question? Because if you do I sure as hell would like to hear it!
The picture attached is of my scar yesterday – in 4 days it will be 3 months since my operation; and in my humble opinion I think it is healing quite nicely, and I am certainly feeling a lot like myself than I used to! In fairness this picture may be doing the scar almost too much justice – I think flash was on; in reality the scar is a more prominent colour – a dark red / pink line snaking down from my tummy button, but its narrowing and healing well 🙂 I am eating fine, excercising, cycling and being able to do what I want with my friends- so I would definitely call that a positive outcome.
But sometimes there is that niggling fear – that worry that it is back already. Sometimes my stomach still grumbles really loudly, not as bad as before, but for definite there. It is when I am lying trying to sleep at night the worry really hits me, is it back? Am I ill? How do I know when things are getting bad again? And then the irrational anger that hits at about 3am…well that’s it. I am ill. Crohns is back. I didn’t even get three months, THREE MONTHS is that all I am allowed to be healthy for?! Can I do it again? Can I get through that operation and the pain and the waiting and the diagnosing all over again? No. I give up that’s it…… and so on. And I wake up every morning feeling fine again and laughing in my head about my overreaction. but it is there – that subconscious fear that its coming back, that I am still not quite back to normal…will I ever be free of that gnawing concern? Maybe not, but I would sure as hell prefer to learn to live with that than the crippling cramps I was having before 🙂
I am taking the medication and all is going well, I thought I would see if any others of you suffer from the paranoia I get, but maybe not…let me know 🙂 Otherwise my only other concern is trying to work out what vitamin tablets and the like to take – and I know its bad but right now I just cant be bothered, I am too busy actually living my life to sit around and plan for tablets anymore. I know I know, its asking for trouble – but they aren’t as important as my actual medication which I take without fail, and the blood tests I am still on top of.
Sorry for the random nature of this post, I didn’t mean for it to have such a bad flow and be dotting here and there – I guess you can now see how my brain truly works, a real peak into my head! As of this minute I am sat at my uni desk having stuffed myself on a roast lunch we cooked, with the sun on my desk, a smile on my face and typing this before I head to an ice cream parlour with my bestie. Bliss.
FINALLY feeling like a normal person again, back at uni, back in modules, back to going out – the whole deal – wooo!
Been loving being back at university, and so far (touch wood) everything has gone really well, not feeling tired and managing to cope with the workload, going to the gym and trying to keep up some sort of a social life at the same time , so really pleased!
Went to see my specialist on Tuesday for a follow up appointment, just to make sure he was up to date with everything and to check a few points (like blood tests etc). He was really pleased with the fact I am so happy at the moment, everything really is going well 🙂 He said that blood tests for the Azathriaprine are now only needed once every few months (WOO) and that I don’t need to go back and see him until May! Yaaay! Is it sad that those like 3 months will be the longest I haven’t seen a doctor / blood tests / hospital / A and E or whatever in probably over a year? Maaaaaad.He did spring a sneaky blood test on me at the hospital though – to check if I was taking the right level of dosage of medication, not impressed with the sneak attack but still!
Got really frustrated at my university doctors- I know I am not a trained medical professional, but am feeling like I spend most of my time talking to people at the surgery on the reception desk who know even less about how the doctors surgery works than I do! I was promised that my medication would go on repeat prescription, and was told it had – so no Tuesday I rang to get it re=prescribed as I am basically out of medication and they said it wasn’t on repeat have to book an appointment and the first one isn’t until Monday – not impressed! I told them that by then I will have had a day, if not two, without any medication, but apparently there was nothing they could do. great. Turned out okay – instead of taking the 125mg a day I am meant to, I have run out of all the 25mg so just taking 100 a day- but only for yesterday today and tomorrow, so shouldn’t have any implications…I hope! Feel free to comment below with a moan if you face similar situations, its good to vent the frustration!
Anyway, just an update for all of you out there- chin up, things do get better! Feeling on a bit of a high at the moment, and thought you all might like to know that Im not always moany! Ha!
Made this today, used a random selection of my blog posts from the last few weeks and copied all the text into one long section and put it into tagxedo to make this.
When you write sometimes you don’t realise some of the more subtle things you type, some of the words you repeatedly use to show an emotion – making this made me smile and reflect. This handprint shows a crazy part of my life, and reminds me of everything I have been through; hopefully I will be moving onwards and upwards and this print will just be a handprint in my history, not a continuing theme!
Let me know what you guys think of it!