If the consultant won’t deal with it, I will.

 

After my last post, and my last appointment with my consultant, and his claims that my pains aren’t Crohn’s related, I decided to take matters into my own hands. 

Firstly, I made an appointment with my GP. I explained to her that I was experiencing severe pain and my consultant claims it’s not Crohn’s pain. I also expressed that if it’s not Crohn’s pain, but the pain is absolutely there then something else must be causing it. I told her I was worried it may be some female cancer lay undiagnosed because I’ve been dismissing it as Crohn’s. She said I don’t fit the ‘criteria’ for most female cancers as I’m young but she’d certainly get things dealt with. She requested a trans-abdominal ultrasound, a smear test and a explained that because female sex organs are so tiny that they may not been seen so I also may need a trans-vaginal ultrasound. Daunting, but at least she’s covered all the bases. 

Secondly, I explained that my knees are in horrendous pain and Crohn’s is regularly associated with arthritis. Added to that, my mum and maternal uncle both got early onset of arthritis. My uncle’s in his 30’s. She expressed that the arthritis associated with crohn’s tends to affect the extremities first. And although my ankles are sore sometimes, it’s my knees that wreak havoc most. (This information is contrary to everything I’ve read in my extensive research, but I guess she’s the qualified practitioner and as qualified as I sound [not to blow my own trumpet] I am not). She also said that knee pain and buckling is most commonly associated with weight. She lay me down on the bed and did a variety of physical exercises on my knee and said ‘It does creak some, doesn’t it?’ Creaking, really is the least of my problems. I frequently fall down stairs and my knees buckle at any given moment. And the snow, ALWAYS, always wins. 

She has sent of for an MRI of my knees. Which I’m hoping will shed some light on them, maybe even stop them hurting as they do. They seize every night. I’ve mentioned the ‘spider’ my disastrous walk down the stairs in the middle of the night. They become so stiff that even the 5 steps from my bed to the top of the stairs is hazardous. The dog, our clumsy but lovable chocolate Labrador frequently takes my legs out from behind. I hope to hell it’s not arthritis. Because if it’s something else, like my weight for instance, well I’m working on that. I’m slowly but surely loosing weight. And then hopefully it’d be easier, and better. But to be honest, when you hear  your 90 year old great great aunt say ‘It’s going to rain, duckie, I can feel it in my knees.’, well, I can. My knees hurt 300% more when it’s going to rain. So if all else fails, at least I have an accurate, inbuilt, barometer. 

I’ll keep you posted. I am solely responsible for the budgeting crisis the NHS is experiencing. But I am grateful. More grateful than those rich-list, Robin Hood in reverse, Privatisation-freaks could ever possibly imagine. Because they can afford Bupa Health-care. Because they have funds to make sure they get the best treatment. But for me, the NHS is my first, last and only source or medical treatment. And I will fight for it. As best I can for as long as I can. 

 

As always the picture above does not belong to me. Over and out ❤

PIP Application. (Personal Independence Payment)

I’ve mentioned before how I’ve been turned down for DLA 3 times. DLA is a British benefit. It stands for Disability Living Allowance. It’s a benefit that is awarded to people of a certain level of sickness. Say, a level that is debilitating and life-changing. But not for Crohn’s. It’s not serious enough.

Except now, DLA has become PIP. Personal Independence Payment. And the form that seemed about 80 pages long, has been halved and now the criteria to fit into has shrunk exponentially. (I realise exponentially refers to a rapid increase, but as there is actually no listed antonym for it, I guess it’ll have to suffice with a certain degree of poetic license.) The 80m rule, where if you can walk this far without aid or rests, you are considered fine, has been quartered. It’s now 20m. Now, don’t get me wrong, 20m is a long way for someone without legs to walk, but my illness isn’t that obvious. I have legs. In fact, apart from tact, I’m complete. Just what I have, doesn’t work.

A strange man from the council, who happened to share a name with the creator of Wallace and Gromit. Came out to help me fill in the form. He was very empathetic. I could see by the look on his face that he felt awful that I am not entitled to anything, and he genuinely thinks I should be. And that the system is corrupt and backwards. But it’s not his decision. Nonetheless, after 2 hours of filling out this form, he calculated the points and said as far as he’s concerned I am definitely entitled to this benefit. However. This is austerer Britain. Rob from the poor to give to the rich. In fact, I’ve come to think of David Cameron as a reverse Robin Hood. And the odds of me getting this benefit while I don’t have a stoma is so slim, I hold no faith that I will be awarded it this time either.

I lost my job, I am not entitled to any benefits, I am housebound for 90% of the day, I can rarely go further that our local Sainsbury’s any more, but even so, it’s not serious enough. I’ve been hospitalised twice this year and it’s only May. In the last 2 years I’ve spent 20 days as an inpatient and maybe 40 as an outpatient. I can’t work, I can barely cook it requires that much energy. I’m STILL wrapped in a blanket and it’s officially spring. But it’s just not that serious.

We shall see. And when I know, dear followers, you will know.

 

Over and out ❤

Most recent Consultancy.

Dear Followers,

 

I’m sorry I haven’t posted very much recently. Well, actually nothing at all for a good few weeks. It’s been busy. By busy, to anybody else, it’s been incredibly slow and boring, to me, I’ve been rushed off my feet. We had my two littlest sisters for 10 days during the Easter holidays. I’m still not recovered. Not just from the being ‘all-go’ while children are around, but from the emotional strain hat you are under whilst children are in your care. I’ve never notice before how much emotion comes with caring for children. I was angry, upset, sad, happy, excited, proud, pleased and a whole host of other things. Of course, the former few of those of course, negatively affect my Crohn’s. Of course they do. Typical. 

I’ve also had an appointment with my consultant. Now, bear in mind that he upped three of my medicines in the last appointment, and promised to refer me to a pain specialist. And this is roughly how the appointment played out.

Dr. M – How are you, Zoe?

Me – Crap.
Dr. M – What do you mean by that? Why?

Me – Well, I still spend every day in pain. I’m not going to the toilet as often but on the days I don’t go, it’s worse. I still get at least one migraine per week, and I know they’re caused by prolonged nerve pain.

Dr. M – What’s worse?
Me – Everything, the pain, the nausea, cramps, everything.

Dr. M – Well, looking at your most recent Colonoscopy, your bowels have dramatically improved since a year before.

Me – So why am I in pain every day? 

Dr. M – I don’t know. Are you an anxious person?

Me – No, why? 
Dr. M – Because I don’t believe it’s your Crohn’s causing this pain. 

Me – So what is it? 

Dr. M – Well, the pain and diarrhoea you are describing is consistent with constipation with overflow. And one of the medicines I increased last time is known for causing constipation. I think we should take you off the Amitriptyline and see how that affects you. We upped that to deal with your pain and migraines but clearly is isn’t working so we might as well stop.

Me – And what in the meantime? I’m supposed to just stay in pain?

Dr. M – Well, in the meantime, I’ll refer you to a pain specialist [He said this last time and hasn’t] and I’ll refer you to a neurologist about the migraines. We’ll order a stool sample to check the calprotectin levels, to see if your Crohn’s is active, but according to all our data and evidence, your Crohn’s has retreated. So we need to figure out what’s causing this pain. 

Wife – I’m not being funny, but I see her. Nobody knows their body better than the person whose body it is. I see her doubled over in pain most days. I see her face. She isn’t making it up, so what, you just want her to sit there in pain?

Dr. M – Well, no. I’ve referred her to a pain specialist and we’ll monitor it and see if there’s any improvement. 

 

 

I left feeling dejected. Still no better. But that’s ok. It doesn’t matter if I spend every day in abdominal pain, because my Crohn’s is behaving and responding to treatment. Why would it? Who am I? Nobody. I’m not a paying customer. I’m an NHS patient. And one that he thinks is exaggerating, at that! 

But he also planted a tiny seed within me in that appointment. A seed of doubt. On many levels. I doubt his capability to fix this. I doubt he believes me. I doubt he is as compassionate a a specialist in that field ought to be. He should know the extent of this disease. He should know how sneaky, underhanded and stubborn it can be. But he also left me doubting my body. If it’s not the Crohn’s causing the pain, then what is it? Some type of female cancer? Something else I have to deal with? Along with the 10 other conditions/syndromes and disease I have? So I’ve decided to take it into my own hands,and I’m going to push my GP into ordering an ultrasound to look into my abdomen. Just to be sure. 

 

But I guess the results will be another post for another day.

Over and out ❤

 

As always, the above post does not belong to me. 

Does your consultant always have your best interests in mind?

In January, I was admitted to hospital with a suspected bleed in my small intestine. I was told at the time that I needed an MRI to check how my disease was doing. My consultant’s exact words were ‘I know you have Crohn’s, I am looking for improvement,not disease.’ I had a routine MRI booked for June ’14. He said he wanted to bring it forward because I’d been so ill. He said it would be between the 27th of March and the 7th April. 

When the 25th March arrived and I’d still received no word about my MRI I called them. I called the unit that deals with outpatient procedures. They had record of my original MRI request (for June), and they had record of it being moved forward, but they had no request. Now MRIs aren’t cheap. Approximately £2300. You know, enough money to get you on an amazing holiday. Now what we take for-granted in England is that we don’t have to pay, but somebody does. I do my best not to complain. To causes as little hassle as possible because I know how much things cost. 

I then spoke to my GI’s secretary, who’s a rude, bitter cow, that could do with a smack. (Excuse my violent tendencies, I can’t be doing with people talking down to me, without patients like me, she wouldn’t have a job, so she ought to learn some respect!) She said she’d chase it up, after asking my name 3 times, and having me reiterate the situation twice. I heard nothing for 5 days, so I called back. I got a different secretary this time, and she said she’d chase it up again and see what the problem was. 

Finally, this morning, I received a phone call. My consultants says he’s happy to delay my MRI until June. Fabulous. I didn’t go away with my wife because I was expecting an appointment over the time she was gone. I put my life on hold, waiting for my this appointment because my health is a priority. To me. This makes me question whether or not I am a priority to the man whom my health relies upon. He makes the executive decisions about my health, my bowel, my life. But he doesn’t see that as a priority. Maybe because I haven’t moaned much over the last 3 months. This doesn’t mean I’m well, or miraculously better. It doesn’t mean I’m not in pain or I’m not worried about what state my bowel is in. But what it does mean, is he loses some of the respect I had for him. I held him in high regard. I trusted him to take care of me, and I can no longer do that. It just reinforces my view of ‘You have to look out for number one, because nobody else will do it for you’, not even the people entrusted with your care. 

Does anybody else have any stories of being let down by consultants, nurses or doctors? If so, hit me up. 

 

 

Over and out ❤

As always the picture above doesn’t belong to me.

 

Asbestos Awareness Week!

I know this is a little off subject, bear with me. You’ve heard of Asbestos, right? If you haven’t, I take it you were born after 1995 or you live in a ‘3rd world’ country.

Asbestos is, in short, a set of 6 natural occurring compounds that were mined and used in building and decorative purposes. It was mined in the same way as coal. Deep underground and long laborious hours. Surprisingly, it’s been used for 4,500 years. much longer than I expected, actually.

It’s common place now that asbestos is deadly. But do you know any more than that? I didn’t. Prolonged exposure causes a rare form of cancer. Mesothelioma. Mesothelioma affects 3000 people per year, and on average, once diagnosed, those unfortunate people are given 10 months to live. Can you imagine how your life would fall apart if you were given 10 month to live? Me either.

This particular type of cancer affects the membrane lining of the lungs and the abdomen. It’s symptoms mimic a variety of different diseases, so it’s often misdiagnosed or even un-diagnosed. At the moment, there is no known cure for mesothelioma. Hence the high mortality rates and the short life expectancy once diagnosed.

I was contacted by a brave lady called Heather. She asked me if I’d mind writing a piece on asbestos awareness. I don’t have a massive following at the moment. I have 43 followers. But if each of my followers reads this piece, then I’ve taught 43 people how important it is that this deadly disease is recognized.

I digress, I called Heather ‘brave’ because she was diagnosed with mesothalioma. She was given 15 months to live. It’s now been 7 years. Because she didn’t give up hope. She kept fighting and she didn’t give up. In my book, this is commendable!

This is a link to Heather’s blog, so you can find out more, and read abut her personal battle with mesothelioma. http://www.mesothelioma.com/heather/awareness/#.UzwkwPldVh4

 

It’s asbestos awareness week from the 1st to 7th April. I hope you’re more informed and maybe you can share the words, get asbestos poisoning the recognition it deserves, and you might just save a life.

Over and out ❤

 

As always, I do no own the above photo!

One of those delightful nights of no sleep!

I spent yesterday feeling a bit iffy. You know, just one of those ‘this will either pass or hurt’ days. I’d already had to take extra doses of tramadol during the day for pain. Finally when I went to bed, I took all of my meds and attempted to descend into sleep. I had stomach cramps as I lay there reading and those cramps didn’t dissipate. I took extra pills, I went up and down the stairs three times in 5 minutes to try and go to the toilet, only to return in the exact same predicament. I knew I had to be up at 7am. In the end I had to make a hot wheat bag to combat the pain. Finally, I begin to drop off, my eyelids heavy with exhaustion but my brain wide awake with pain when the alarm went off. 7am. No sleep. Again. 

Just another one of those things we have to face as a Chronie. Happy mothers day out there to all of the mothers and most importantly to my mum. Who without, I wouldn’t be where I am today. I probably wouldn’t be here at all. 

 

Over and out ❤

Crohn’s Safe Recipe: Hearty, thick and comforting stew

It’s been a while since I posted a recipe for all my beautiful followers to indulge themselves with. This one is one of my staples. It’s also about the only red meat I get to eat because it’s so damn expensive! It’ more of a casserole than a stew because it’s not remotely similar to a soup, and you would have some carbohydrate with it. If you can’t have carrots I recommend you try them this way, as I can’t eat them any other way but stewing them for this long must destroy the molecular build up. We usually have garlicky mash as a side. This can either be cooked in a slow cooker or on a hob top on low for a million hours. I use a slow cooker and apart from the occasional stir, it needs next to no attention. A-maz-ing.

Hearty, thick and comforting stew. 

Serves 2-3

Ingredients –

400g of diced beef or lamb (it’s the perfectly suited meal to use cheaper cuts of meat, browned if you like)

1 leek, trimmed and sliced into rings

1 onion sliced into rings

1 whole carrot cut into chunks

1 Oxo cube

fresh or dried herbs

1 tbsp of Worcestershire Sauce

Gravy powder/granules

1 medium glass of water, boiled.

 

Method – 

1- Turn the slow cooker on, on low. If using a hob top, put the water on to boil, add the vegetables, chopped and the diced meat. Add the herbs and oxo cube and leave to simmer for 6 hours.

2- At this point, you should start slowly adding the gravy granules, it will thicken over the next 2 hours, so add a little at a time. 

3- Add the Worcestershire sauce (it important you don’t do this at the beginning as the flavours will intensify and you will have a VERY tangy stew!)

4- Continue to add more gravy granules over the next two hours until it’s the desired consistency. 

5- Prepare some form of accompaniment. We make Garlicky mash, if you would like the recipe for this, I will include it further down.

6- Serve. With your side. The meat should be SO tender it melts in your mouth. 

 

Garlicky Mash Accompaniment.

a –

5-6 medium Red potatoes (Albert Bartlett are great for this recipe!)

Splash of milk

1 tbsp of butter/butter substitute if butter is no good for you.

3-4 Cloves of garlic, more if you are an aficionado of garlic!

Water

Method –

1- Peel and cube the potatoes and peel the garlic

2- Put in a saucepan and cover with water (The potatoes should be covered with bout 2 fingers depth above the top potatoes)

3- Bring to the boil and the reduce heat to lowest. Simmer for 20-25 minutes or until thoroughly cooked

4- Drain the water from the potatoes using a colander. Return to the saucepan and add the milk and butter and mash to a smooth creamy consistency

5- Serve!

 

 

This meal is great for those who’d like to intake a little more vegetable goodness. The nutrients are leeched into the stock and it tastes devine. If you can tolerate celery it makes a fabulous addition. If you can’t you may wish to leave a celery stalk whole and remove it before you start to thicken the liquid as it will add intense flavour but no fibre! It’s a very versatile dish and can be serves with chips, with new potatoes, with a jacket potato, with rice, polenta… literally the list is endless. You can also add and omit vegetables according to taste and preference, and Crohn’s restrictions.

 

 

For a nice change, I do own the photo above, but I DON’T profess to being a photographer.

Over and out ❤

 

 

 

Crohn’s Diet: Update 2

You probably don’t need reminding by now, that I’m on a mission to lose some weight. I’m not living in a deluded land. I know I’ll never be a size 6. I don’t want to be. I had the most wonderful day yesterday. 4 generations of females, my nan, my mum, my sister and my niece. I still managed to stay in my target eating zone, and not only that, my sister, Alice told me you can see that I’ve lost weight. (I still can’t, but it’s better than nothing!)

It’s getting easier. My wife isn’t here to make sure I’m only eating the ‘right’ amount, but I haven’t cheated. I know I have a long way to go but if I cheat, I’d only be cheating myself. The good thing about this type of diet. (The perfectly-tailored-just-for-Zoe-who-has-many-eating-issues diet) is I can eat whatever I want. Literally. Ice-cream, cheese, pasta, chocolate, crisps. WHATEVER I WANT. I just have to cut down on my portions. Sometime it’ easier than others. I love risotto. I’ve not eaten it yet. I think that would be my mot difficult meal to cut down. I’ve never experienced food heaven quite like my own; Recipe here – https://tenaciousz.wordpress.com/2014/01/26/26-01-14/

I cooked a sachet of flavoured rice yesterday. I could easily have eaten the lot with my piece of [overcooked] salmon. But I didn’t. I ate half and gave half to our very lucky Labrador, Charlie. He thought it was delicious. I know because he told me. It is getting easier. It’s also getting easier to not eat for the sake of it. I don’t know how I’ll cope Wednesday when I do the shopping. I guess I’ll have to take it how it comes. But if you can take anything from this, please take this. No matter how big you are, or what your circumstance are regarding food, if you’re not happy, there is ALWAYS a chance for you to lose weight and change your life. Asking for an appointment with a dietitian was one of the best decisions of my life. I needed professional help. But that’s ok. 

 

 

Over and out ❤

 

As always, I do not own the above photo!

Crohn’s diet: Update 1

So I’ll remind you that 5 days ago, I saw my new dietitian. Marc. And he’s amazing. He said because I’m ‘A tough cookie’ and I have dietary restrictions (Crohn’s, distaste and weird phobias) that I should work on reducing my portion sizes and for the foreseeable I should eat off a saucer. I have successfully been doing this. I’ve also been keeping a food log. So far, my days have been one good, one bad, one good, one bad. I’m also allowed cheese on alternate days. (Apparently I eat masses of cheese without knowing I’m doing it, but actually when I think about it, we use over half a kilo per fortnight. That’s normal, right?) 

Well, I’ll have you know, in 4 days I’ve lost…. almost a stone and a half. For my Metric friends else where, that’s 9.5kg! Can I get a ‘Hell YEAH’? But can I see where it’s gone? Of course not. I don’t look or feel any different. Well, not in my eyes anyway. And my clothes aren’t any looser. 

So as difficult as it is to look at a saucer/side plate and know that’s all I’m allowed to eat, it’s getting easier. I’m trying to slow down when I eat, so my body registers it’s full while I’m eating. (I don’t chew food very much. Rice and mash, not at all. Meat maybe 5 times…. phobic of the feel of mushy food in my mouth.) 

I’ve got to keep going because I don’t want my body to hurt anymore than it already does. Maybe it’ll relieve some of the aching of my joints, maybe not, but either way, I won’t hate looking in  the mirror so much. 

 

 

 

I do not own the above picture. Over and out ❤

 

Tuesday Night from Hell

Pahaha. Everybody needs a little swag!