I've been diagnosed with Ankylosing Spondylitis

This blog post is disguised as a positive one I promise. It might not seem it initially. 


This week I was shocked to receive a letter from the hospital following an MRI I had a few weeks ago. 

Reluctant to lay in the machine, I felt so nervous. 
I’m not sure what I thought might happen but the heart was pounding anyway. 
Thankfully the amazing hospital workers had no hesitation in letting me use a machine which they told me was a bigger one. 
Still looked small to me. 
Yet I appreciated how sweet they were considering it was the end of the day. Without their kindness I expect they could have left earlier for home. 
Previously, an MRI (they were looking for spina bifida occulta) showed 3 degenerative discs. One facet joint had some osteoarthritis but let’s face it, I’m not 21 anymore. So part of me almost didn’t go for the test. 
The results informed me I have Ankylosing Spondylitis. 
There are square vertebral bodies with lesions, sacroilitis on both hips both sides of the joint and it generally sounds like a lot of inflammation is going on. 
Stunned. 
I’d read around AS before but was thankful I didn’t have it. Now I do. 
This is life changing. 
A chance of spinal fusion is frightening. This means the spine ends up one big long bone rather than lots of little bones. 
The treatment is naproxen which will flare up the crohns so we can’t go down that route. There is biological treatment available but I know nothing about that yet. 
Already, I’ve made positive steps in my research and hope things can continue to give me hope. 


I’m feeling like I really want to crack on with living life just now. 
Travel. 
See the world. 
Sort my house out. 
Get some building work done. 
Apparently, daily exercise is a must. Eating a low starch diet is also proven to help. If you want to read around the science bit, I’ll link it here. I am excited to read that one of the bacteria in the gut (which loves to feed on starch) is linked to CD and AS. So, this makes total sense as when I followed the specific carbohydrate diet my gut flora changed, as did the back pain. 
At the age of 13 the back pain started. No one seemed to think this was unusual and I’ve lived with a bad back ever since. Around the same time (tmi warning) I began I lose blood from my intestines and the GP decided this was likely heamorriods without an examination and for years I lived on medication for that until my crohns diagnosis 25 years later!
It’s bad. But. I can’t turn back time. So what can I do? I can exercise daily and eat right. 

I can live life. 


Since it’s sinking in that I’ve been diagnosed with #ankylosingspondylitis (another autoimmune disease) and researching diet. 
Apparently a low starch diet is heavily evidenced to help against the progression of AS. I clearly remember going keto to help with crohns. My back had never been so good. 
Then I felt better. 
Things slipped. 
🍫🍰🍦🍭🍬🎂🍩🍷
No option but to put the body first now. 
Stress be gone. 
Exercise and stretching each day. 
Low starch diet here we come. 
🌰🍤🍗🍖🍆🍅🍒🍑🍍🧀. 
Aiming to prevent spinal fusion. 

The next day diary entry:

Today sees my doctors visit from my painful knuckles. They sent me to hospital for an x-ray and blood to check for rheumatoid arthritis which is an autoimmune, inflammatory condition – sounds like all the other issues I have.
Still feeling pretty devastated but determined to get a grip of this through low starch diet and daily exercise.


I’m giving up the struggle of life now and I’ll make it let me know what it wants. 

Almost like using it as an excuse but rather it feels like living the life I'm meant to be living – putting health and happiness first – which is incredible. Let’s see what happens now moving forward. Have a big long list of things that I would really really like to do such as update my pod casts. I also quite keen to get things moving on you tube .
I’m going to have to call in the troops and get some people to help with my sales online. Really and truly I want to do some travelling and documenting all as I go. Hoping to show others that through the power of research and positivity you can live a good life despite all of the things that life throws at you. Having an ankylosing spondylitis is a big blow to me and I feel quite devastated. I feel like I need the energy to start to sort my house out and my life out. But I think I can do it. I do feel quite positive.

I’m not quite sure yet how I might make my routine work. But I will need to get to the gym today. And also do some work on my computer. How and why I’m not sure which way round it might work. Unless I combine the gym with going afterwards I’m working on my computer. Could be a possibility.

I'm aiming to keep calm and just go with the flow of life. But this one is tricky.

My final degree results!

After the last meeting which was more than difficult to handle, I was so sure i was still pretty upset.

My son and i had been somewhere which escapes me now.  As we pulled up outside the house I said.
"ohhh." and he asked what?  I was looking at my phone.  A group chat told me that our final results of our final public health exam was in. I knew this was make or break.

Looking at the phone frantically the minute we were inside the house, I was trying to log in. There it was.

"YESSSSSS!!!!" I said quietly and punched the air at the same time.
"yeah?" My son asked?  "Yes son, public health exam was 59%. That means a good overall mark and I passed my degree!" 
"Yes mum." He fist bumped  me. 

Quickly I reached for the scientific calculator and began to punch in some numbers. 
Turned out well.  A really strong 2:2 at 57%.  I wouldn't imagine they will add in adjustments to the tune of 3% to make it a 2:1 but given the journey I have had the miracle of 'just finishing and not quitting' then 'not getting a 3rd' was achieved.  I was happy and totally proud of myself. 

A long load of group chats followed as we discussed our results.  Everyone was on a 2:1 and one lovely friend on 69% which I hoped they would increase for her.  Of course, a Facebook status followed.  100 likes and many comments.  I was proud and chuffed.  
Then my body began to ache. I could hardly breathe out.  A fever followed and a heart pumping so heavily at 120 beats per minute.  Did I have the flu? I thought so and was tempted to try and get myself to the hospital but didn't have the energy. Instead I took paracetamol and waited.  

24 Hours later I was almost right as rain so I can only imagine this was a release of all the negative energies coming out. I'd also had an indian head massage earlier in the day so perhaps that didn't help. 

Feeling very happy and relaxed now, I have done it!

Onto the next chapter which I will tell you more about in the next blog post. Suffice to say there is a slight swerve in direction. 

Fashionably early darling?

Is there such a thing as fashionably early?  WEll I'm early.  That NEVER happens!

Mrs ten minutes late, thats me.

Not tonightm you see, I am at university (hiding in the IT lab) right now as ther eis what I hope will be  a motivational everning ahead. So here I sit among the students who ar elikely to grafuate withj a first as I atten,pt to tpye (I'm used to a MAC keyboard) this little story in my little black dress

Jeez this dress has seen some action this year.  This is what I call my funeral dress.  Tonight I have dressed it down with boots and a jacket kind of like a blazer sort of thing and of course, the lanyard.
Sometimes I love my lanyard, its great to fiddle with and it also there are good days when it makes me feel 'part of something'. OTher days when I'm huffy, I wonder why we all need to be labelled as if we are in some clone country or soemting.  Gosh my writing this evening, Im sensing this is how I would write if I had some wine, yet that rarely happens.

So today, here I am at something called Greenwich portraits where they reveal photos taken of amazing people who are real achievers in this university of mine.  A few things they do really well here is plan stuff like this. SO I sense I am off for nibbles and a glass of soemthing in a flute and lots of happy smiles.
My anxiety is so much better than I can even begin to explain. Most days I feel like a different person. Like the person I wanted to be.  PErhaps its my hormones#/? DR says I'm definitely in my menopause.  IT seems to suit me. Maybe this will be my best time of my life... maybe this is what all the struggles were for.

Anyhow, it's almost 6pm and time for me to sass my way around the poshest, most beautiful room in uni....thanks for killing time with me these past ten minutes...x

Biology results are in!!!

Yesterday,  a little notification popped up in our nutrition student Facebook group.

"Biology is up."

I was out with the children at the time and took a deep breath.  The internet was intermittent where we were and it was definitely not a time to make things all about me.  I whispered to my son, "I'm about to get an exam result."

Not realising that this was actually also a mark for the entire module.

So, carefully I logged in. It all felt so alien to me after just a short spell of time not logging in.  Those people who log in throughout every day to get results.  Bit more committed than me maybe?

As I clicked here and there I realised things were looking GOOD.  Relieved, excited and a little proud of myself I noticed that I had 67% for my exam! Chuffed to bits.  Had there not been that silly 30% essay mark in this module I am pretty sure I would have got a first.  However, scraping a 2:1 with an overall of 60% impressed myself.  Not going to complain about that at all.

Chuffed.
Chuffed.
Chuffed.

Meanwhile, we await the rest!

Good luck with yours.  Any results in yet?  What did you get?

Bank Holiday revision

After much panic (needed panic?)  I am sat at university on Bank Holiday Sunday.

The weather is streaming sunshine outside.  Yet here I am revising.  Thankfully things are starting to click into place and I feel like this is what I need to do.  To just brave it out!

At university we have been discouraged from using  the internet.  Especially you tube.  Yet last year I felt it really helped so much.  Two friends of mine (one from last years uni and one from this year) both suggested I use Youtube.  So I have.  Sitting here with my headphones on and watching youtube.  Making notes and hoping to get around to writing up some bullet points.

All the while I am sharing these videos over on my Science of Nutrition Facebook page.  I hope it will help some of you guys too.

After previous disappointing results, I have really been going to town beating myself up about this.  Silly.  Silly me.

Yet the family have needed me as we have been taking Scott through a series of heart operations, tests and issues.  Of course I'm still there for mum as we get used to life without Dad and now on top of these types of dramas my car has gone wrong.  Not good as I need to pay a small fortune to fix it.  But good as I am now getting a new one!  Wonderful.  Excited.

Meeting up with my personal tutor and the mental health team on Thursday.  Just to get some support.   A little rub on the arm and a 'come on Louise, you've got this' will help massively.

Panic.  Breathe.

Really losing it - poor results

Ok sit tight for a bumpy ride on this blog.


There is  a desperate need and desire inside to actually share a load which is a burdensome load.  Things at university are not going well.

Last year in London, I was an A student.  Except for chemistry which was tricky.  Then I still passed with 56%.

This year, not so. 

i'm struggling with silly results and if I pass, I will only just pass.  This is not the way I operate.

Results today were from a nutrition essay.  Nutrition.  And Essay.  My thing.  My thing?
The title was "What are the role of

Sunny outside, revising inside

Yes, I woke excited for a day of study.  I do love it.  I really do.  So why am I so down on myself?

Why do I feel like I can't do it/ shouldn't do it/ won't do it?

At the end of the day, I would love to be Dr Usher.  Have that Harley Street clinic and likely travel for holiday companies and review gluten free food facilities.  Well, I think I would like to do that anyhow...

Just for today, I will learn some new things I haven't learnt properly before.

Just for today....

How far we have come

March already.  Where is this first year going at university? My good intentions were to add to this blog each week.  Recording my life lessons as well as my science lessons.  Likely the biggest lesson I learnt was that life gets in the way, even with the best intentions.

When you first begin to fill out that UCAS form,  the type of questions you ask as the applicant are likely to be, “Am I good enough?” “Can I pass?” and the like.  Now, however, it is more like, “Where do I find elastic time to magic some space to write that essay?”

Being a firm believer in testing yourself and taking life to the limits in order to learn, I have found a wonderful sense of accomplishment this year.  Simple things have shown me how I learn better as an auditory learner.  Which is a shock as a partially deaf student.  Also, being a lover of technology,  I thought I would fall in love with my new iPad we were supplied with.  However, it seems that this is only one way I find ease in which to record my notes. I still prefer note pads and pieces of paper.

Chemistry is now making sense!

After learning more and more about nutrition is showing me how thankful I can be for the extended year zero at London met last year.  I think without that insight into Chemistry I may have found things tricky this year.  As always with life, there are highs and lows and lots still to catch up on laying on my desk.  This first year at university I have found an affection for the beautiful buildings around campus, for the coffee in starbucks and the smiling faces who serve it.  I now know I want to do well,  have had to lessen the burden of this by lowering my work hours, and wish to continue my studies upon successful completion of this Honours degree.

Here’s to the exam period and the second year.

Essay over, next essay begins while I take steroids

Thank goodness for that.  

The meiosis essay has been handed in and lets await the mark.  I can definitely see areas for improvement but it was like pulling teeth writing that essay.  However, I have learnt loads from writing it and I see loads of research needed is to do with genetics so I guess I might have to learn even more.  I'll keep you posted and update the last blog post when the result comes through.  I usually float around 50-60% so hope for another.... I'd love to improve my scientific essay writing.  Poles apart from blog or novel writing and it's been such a massive eye opener for me!  Not my favourite thing.  It's all Facts, Facts, Facts.  No creativity.  Needs evidence base to back it up!  None of this imagination stuff.  

That said, I spent a little time yesterday afternoon doing a bit of research to decide where I may like to take my career in the field of study.  Would I go do a masters in dietetics?  Or another thing to add into the mix is learning that a PGdip (post graduate diploma) is enough to get registered as a health professional (HPC) as a dietitian.  This still takes lots of placement time running around hospital wards and I'm just not sure how much I'm up to that. Been working on my health and fitness but more about this shortly!  Looking at a PhD I could see that some PhD's didn't require either registration with HPC or a masters degree.  A good mark in a BSc honours would do the job. I really want to be one or the other or both.  Realistically I can see it being a PhD.  London met where I studied last year do one that you can do partly distance learning.  That sounds fantastic.

The government are setting up a new system to take on more health professionals.  It will enable a loan rather than a bursary which will free up a little more money to be able to be spent on tuition fees. Great news for the NHS who need good people.  

So I definitely need to knuckle down and get those grades better to enable me to apply to continue my studies.  Research into Crohns disease excites me.  Relating to food perhaps? Maybe more niche as in the effects of sugar on crohns disease...

Talking of which.  It saddens me to say I've had to resort to taking steroids for the first time in my life.  Between events in my personal life and that time of year at uni (perhaps coupled with food I would be better off not eating) my Crohns is heading into a flare up.  This means act fast, get rid of it.  I always have controlled this with diet before but I will accept that little bit of help.  I'll keep you posted. Watch this space.  

Meanwhile, the next essay begins.  The role of fat in the diet.

Not coping well

Having not written here for way, way too long, I have just woken from a dream that sent me here to let me fingers do the talking. 


Since I last blogged in this journal, my lovely father has passed away.  

Very long story.  One of neglect once again from the medical system.   As this blog isn't about that I won't dwell too much on it. You can read about it in my personal blog here. 

However, obviously this has been a very difficult time on a practical level as well as an emotional level.  University have been less than helpful and I'm at a point (hopefully a temporary point) of thinking I might have to leave.  Despite sending many emails, reaching out for help etc I have had no support.  They have something you can apply for called extenuating circumstances. I've applied and not even had an acknowledgement.  It's been awful.  My programme leader and personal tutor have only replied with condolences.  No offer of help.

Getting to a point of realisation and acceptance, I had decided to just do my own thing as they were not going to help me.

Yet I had missed two weeks of lectures on DNA replication.  Trying to catch up for the third week was near on impossible.  The lecturer was speaking Spanish into my ears.  So I busied myself trying to read all the 'stuff' I had missed.  When she came over and tore a strip off me for being distracted, I found it very hard indeed.  The following week (this week) a woman who should know better tore another strip off me.  Both weeks I had to leave as I was in tears, came home and totally lost the plot with emotions.  

So what do I do now? 

I want to leave.  Correction, I don't want to.  I feel I'll have to.  

While I don't really NEED this degree for the job I want to do, it will give credibility and knowledge second to none.  I want this degree.  Yet can't sit in lectures crying with my anxiety and depression issues.

My wonderful friend has offered to phone the university for me and see if I can do a little distance learning.  If they say no, heaven knows what I will do.  I need to be home more.  Things are not good.  

Sad times.

week 3

Week 3 - Lab skills and ipads

The real learning begins this week.  Up until now have we just been 'playing' at university students?  I had a feeling that things were going to start getting serious in the learning department.  Well, this is what we are here for after all.  Part of me feels so excited about the new challenges and getting switched on once again to stretching my brain (this isn't biologically possible I'm so sure!). The other part of me is feeling slight panic.  Who will take care of everything at home?  The fairies I hope.  Then of course there is work to juggle.  All while still over thinking things as I so often do.

Where will this degree take me?

What will I do at the end of it?

Will I write for a living or see patients?

Will I teach others?

Will I travel to far places and cure the hunger crisis?

Monday we saw the start of our first lecture with a fantastic tutor who taught us the basics (apparently) of amino acids.  This is one of the areas I am very keen to learn as I know just how essential it is to my course yet one of the areas I have not yet learnt very much about.  

Making lots of notes, I realised there is so much to go home and learn.  Di-sulphide bridges,  classification of Amino acids and ionisable - what are these?  Time for some Youtube videos once again.

Tuesday we all headed to the lab.  This was great fun and everyone within the group seemed to really feel it was a welcome sense of 'using ones initiative' and good old common sense.  Of course, there is much to learn but also a lot of the above needs to be applied.  I did have a quiet grin to myself as our tutor (with an accent like mine; local) said,

"Morning everyone, I'm Andy!" yet when you look up his email on the system, his name begins with Dr.

He was great! I could hear him clearly in the lab although I did wear my hearing aid for fear of not being able to be near the tutor.  Chemistry.  I am beginning to feel a love for chemistry.  Especially the fact that they gave us our very own drawers, with our very own glassware equipment inside.  All secured with a lovely 4 digit code.

During the afternoon lunch break I was once again finding myself with difficulties of negative conversations.  This was beginning to affect me and I was feeling a real sense of wanting to get away from this and simply work.  Where could I go to do this?  I would have to find a quiet hiding place.

Biology in the afternoon lab was fantastic.  Lots of sessions of learning how to pipette things (not things,  serial dilutions in fact).  I was so glad once again that I had experienced the time I had at London Met last year.  Valuable experience indeed.  People seemed to get the impression that I really know what I am doing and my collegues were asking me many questions.  I helped where I could of course.  It's what I love to do.  As we collected our ipads that afternoon,  I realised I had left my ID badge at home.  I needed this for the collection of the ipad that I would make friends with in the next 3 years.  

"It's ok, I'm local.  I'll pop home and get it quickly." I told the technician excitedly.  I wanted to get my ipad ready to go, loaded with the apps and set for my Friday lecture.

This is also the day I registered with the Nutrition Society.  Feeling very much like a real trainee nutritionist now.  What a beautiful, exciting career to have.

Friday I made many notes.  Isomers.  What were they?  I now know it's simply a name for the same number of atoms but joined differently! Go me.

Chiral  - Still to get to grips with the meaning of Chiral.  

Something about benzine.  It's special for a reason I haven't found yet.

Biology on Friday afternoon was a delight of wonderful cells and organelles.  Once again,  I wrote ATP in my notes.  Knowing this is likely something about energy but not being quite sure, I need to look it up.  I keep thinking something to do with active transport,  yet I know this makes no logic!

ATP is: Adenosine triphosphate. A molecular unit of currency.  ATP transports chemical energy within cells for metabolism.  

Lovely,  now I know something I hadn't known before.

Chronic disease epidemiology

What is chronic disease epidemiology?

It is a way of investigating a link between dietary behaviour and chronic diseases.

Epidemiological studies used:

* 24 hours recall
* Diet history
* Food frequency questionnaire

Types of chronic disease:

* type 2 diabetes
* Heart disease
* Stroke

Ways to investigate the link between dietary behaviour and chronic diseases

* Anthropometric
 Using body weight, height, skin folds, waist and hip circumference

* Biochemical tests

Blood, urine, faeces, tissues are rested to deter subclinical deficiencies

* Clinical observation

Observation of pallor,  hair, nails, skin, eyes, lips, mouth , muscles, joints

* Dietary assessment

Obtain report of food items consumed, portion sizes, frequency, calculation of nutritional intake

Epidemiology and exam help

Epidemiology - this is the one I felt would be common sense. I felt this would be simple and straight forward.

No.

Not so.

Yikes.

To help me revise (no, hang on, to learn) I am going to try writing blog posts.  Pray to God this will help you guys too.  Let me know if it helps any of you...so, ok, here we go.

Epidemiology is 'the study of the occurrence and distribution of health related events, stats and processed in specified populations, including the study of determinates influencing such precesses and the application of this knowledge to control relevant health problems.' (Porto M. A dictionary of Epidemiology)

Distribution means the frequency and pattern of health events in a population.
Population is a group of people with a common characteristic.
Determinants are factors or events that influence health.

Epidemiology is a tool used by governments to determine investigations into public health.

Common terms used are

Sporadic - a disease which occurs occasionally and often irregularly
Endemic - Constant presence of disease within a given population.
Epidemic - above the expected level of occurrence of disease
Pandemic - an epidemic weidspread over several countries or continents.

Morbidity: any departure from a state of physiological or physiological well being.
Mortality: a number of reported deaths in a population in a specific time period.

Analytical Epidemiology - Basic question - "Is exposure and disease linked?"

Research questions/hypothesis - Do persons with exposure have higher levels of disease than persons without exposure?

3 major factors in epidemiology:
social factors
lifestyle factors
personal characteristics

Measure of disease frequency: Incidence = number of new cases of disease the developed during a specified period of time.
Prevalence - number of existing cases of disease at a given point of time or during a period of time.

I hope some of this may have helped, the next few blog posts go into specifics of exam questions you may find help you to revise! Good luck.