Sunday, 30 December 2012

The end of another year.

2012 is over, finished, done. Time to ring in a new year! 
2012 isn't a year I have enjoyed for the most part. I felt I should do a summary of 2012 and it's highs and lows! 
I rung the new year with some of my closest friends at a black tie event. 
Spent the whole month worrying about a close friend of mine, who also has chiari.

The friend I was worrying about during the month of January passed away on the the February. Most of February was spent getting my head around the fact she wasn't around any more. February was tough. Also this month I went a saw a new team of doctors at another hospital.

Always a tough month for me due to a family members death in 2009. That topped with still struggling to get my head around Heather's death made it another hard month (the year gets better, promise) This is also the month I decided to start thinking about going back to work. I also traveled to Wales to meet 2 wonderful chiarians, Kelly and Leanne and had a wonderful time. 

Arrive in hospital on 1st April. A new hospital. Had various MRI scans, lumbar punctures ect. Spent just under a week here. Went back home and then had a week to get ready to start back at work on 16th April. I spent 3 weeks just observing lessons and getting used to being back in a busy environment. I hurt and cried many times from being so sore and tired from work.
On 25th April my brother's other half gave birth to my first niece. A beautiful girl called Grace Lexie Louise Gibbons

I went back into the classroom in May, doing up to 6 lessons a day. Just me, a classroom of 35 children and a lesson plan. GULP. Found this hard, really hard. I soon discovered my most used weapon in my day to day life, my voice, was not the same as before. I was scared to shout incase it hurt. Now this makes me sound like I have zero control over the room, but I mean just literally making my voice loud enough to carry over the low level noise of 35 kids scared me. I had plenty of really bad lessons, plenty of times calling in a senior member of staff to deal with some children. Had to deal with a rumour going round the school, started by the kids who knew me from before, saying I had a mental break and was in a home for 2 years. Found the whole month challenging. 

My birthday. Great time with friends!
Chiari walk 2012, another great one. Was really chuffed because I managed to walk to whole way and wasn't in a wheelchair. 
This was also the month I made a decision, a major decision and handed my notice in at work. I had no job to go onto but had to get out. I loved the school, the kids and the staff. I just couldn't handle it all.

Had an interview to work in a special needs school and got the job. My work mates at the school I was leaving told me I was crazy and that it would be harder than a mainstream school. I took a leap of faith and left. 
A few days after my interview, on 10th July I was at work and managed to have a very large sack trolly fall on my foot and break it. Spent a few months in a cast and an airboot. 
July 20th I finished at my school, ready to start my new one.
July 25th I went in and had a ICP bolt inserted. Another 3 days in hotel NHS. 
The BEST new from this month was my best friend getting engaged. I was asked to be a bridesmaid, exciting!!

Off work, waiting to start my new job. Still in a cast. Spent the summer watching the olympics and trying (and failing) to get a tan on my one exposed leg.

Started at my new school. A class of 11 wonderful children. I had fallen back in love with my job and felt lucky every single day and was (almost) jumping out of bed every morning.

Getting harder. Getting into bed everyday at 4pm and lying down till the next morning. Saw my neurosurgeon and he told me the reason I felt like crud and wanted to lye flat was because I had low pressure due to a CSF leak. Got told to drink loads and loads of fluids and a few other things. Hoped they would work and arranged to go back in January.

Started resenting my job. Hating getting out of bed and not enjoying myself. I was feeling like crap from about 10am everyday and was just miserable. New headache cure tactics did nothing but make me not be able to sleep. 

Another month of pain and a whole new class at work to get to know. Felt like it was June again in terms of work. Had great days as well, enjoying christmas celebrations are so wonderful when the children still believe. Enjoyed christmas at home as well.

And that brings us to now. 12.32am on 31t December 2012. Eager for what next year will bring. Knowing it will involve meeting one of my biggest supporters in my chiari fight from America. 
Hoping it doesn't involve too much pain but knowing it probably will.
Hoping we do not loose another chiari fighter but knowing it probably will.
Hoping I will make a decision about work but knowing I probably won't.
Hoping things are wonderful and peaceful but knowing that is unlikely to happen.
Hoping my family and friends stay just as they are, lovely and wonderful and that is one thing I know will not change. 

I love everyone of you who read this, who follows me. All 20,000 of you who read this page, I love you, you are wonderful and best of all, you are you!

Thursday, 6 September 2012

One day, I will be fine.

I know, I know, I have been slacking with the carnival. Between going back to work, having my ICP bolt done, breaking my foot and feeling crappy I just have been lazy.

This months carnival theme is How are you doing? Theme: Finally answering truthfully.

How am I doing? My normal response would be the generic, FINE! I am fine! I am grand! I feel great! Normally, these would be lies.
Most days I am able to look "normal" look fine. However internally I am feeling rubbish.
I feel I have lost a fair amount, quite a lot physically. I just try and remember that I am not about what my body allows me to do. That does not define oneself. The question is are we our bodies or our minds? Things I have lost are important to me because they help define who I am, don't they? I was a good musician, a good teacher, and enthusiastic person. Now, I am getting back into work, playing music again, much worse than before, due to sore hands. I was thinking of all I have lost and I have lost a lot, but something within me fights against that train of thought. Although some of the physical may have gone, some for ever, some not so, the essence of who I am stays strong. Who I am is still very much alive and functional. People need to remember this distinction. One can work as hard as they want on anything that they think will help to shape who they are, but if one does not know who they are without all of that, then when it comes to the time to rely solely on their personal strength they may falter. I am still trying to learn the new me, the real essence of myself. No one will ever reach true happiness unless they realise there is always a ceiling, a point where you have pushed yourself to be the person you will be happy with, not perfect, but fine.
So maybe one day, maybe in the near future, maybe along my long and winding path, I will be able to look someone square in the eyes and say I AM FINE!

Sunday, 2 September 2012

20 Things about my Chiari

Chiari awareness month! 
20 Things about my Chiari 

1. Diagnosed when? March 2010

2. Decompressed, if so when? July 2011

3. Other additional conditions, if so which ones? Scoliosis, SM, strabismus, osteoarthritis

4. Have you personally met someone else with Chiari? Yes, about 30 people.

5. Most challenging symptom(s)? Pain and sleeping. Crazy bad insomnia.

6. Most embarrassing Chiari moment? Getting told off by an old lady at 4pm for drink driving. I was just walking a bit wobbly!

7. Biggest Chiari frustratsions(s)? Having people look at you as if to say "you don't look sick"

8. Number of medications in your personal medicine cabinet? 12, excluding over the counter products

9. Number of Doctors/Therapists stored in your phone? 3

10. Do you attend Dr appointments solo or with support? I always bring someone with me but, depending on the appointment, I will go in the consultation room alone.

11. Biggest regret that Chiari has created? Missing out on events that friends and family attended. Missing out on Jacob's first holiday and 2nd birthday.

12. Biggest lesson that Chiari has taught? To live each day to the full because you never know what can happen tomorrow.

13. Favorite non-medicinal therapy? Relaxing in a bath with some music or a good book!

14. Worst medicinal side effect? Weight gain from gabapentin, amitryptline and dexamethasone

15. Biggest change in your life since diagnosis? I lost my driving license, moved back home with my mother and was off work for ages!

16. Worst medical test? Lumbar Puncture or having an ICP bolt inserted.

17. Hardest thing to give up because of Chiari? Driving, rollercoasters, and trampolining.

18. Have you become more or less religious since diagnosis? I have never been religious really. I feel that nobody deserves to be ill and if there is someone out there who has made me this way, then why would they do that?

19. Where do you find enjoyment now, that you didn't before? I enjoy life at a slower pace. No going out clubbing or partying. Now I like good friends and some glasses (or bottles) of wine

20. Favorite Chiari websites? Chiari Group on Facebook =D

Sunday, 29 July 2012

1 year zipday!

Today I have reached my 1 year anniversary of having surgery =D

Saturday, 28 July 2012

ICP Bolt is all done.

Had my ICP bolt fitted on Wednesday. Had it done at about 8.30am. They took me down to the anaesthetic room, so it was sterile, even though I was not being put to sleep to have it fitted. They took off a very very small bit of hair, I had requested the bare minimum amount be taken. They put a bit of local anaesthetic in my scalp and made asmall cut in my head, above my right eye and about 1cm behind my hair line. They pulled back the scalp to expose the skull underneath. They then used a small hand drill to drill a hole about 1cm across through my skull. This was a sensation I ca only describe as strange. No real pain just a bit of pressure. They then used a blunt needle to put a hole through the lining of my brain, again just pressure. They then pushed a tube into my brain which was about 10cm long. Then a screw was screwed into the hole allowing the wire to be kept inside. They wrapped it in an iodine swab and left it sticking out my head. I was back on the ward in 45 minutes. I was then attached to a monitor which was huge. It had 2 displays showing my ICP and a big printer. Had the wire in for 2 days, I was bed bound for all of it except being allowed to go to the bathroom for a few minutes at a time.
The removal was fine. They literally unscrewed it, which was a little strange again. They gave me a few stitches, but no anaesthetic was needed for removal. I have come home for it to be analysed and will go back to clinic in a few weeks.

Close up shot of the bolt!

Tuesday, 17 July 2012

So I had an accident at work last week and after a week in a cast I am now the (not so) proud owner of a aircast. Broken foot+chiari+crutches=hell!

Friday, 22 June 2012


So I have come to a decision. I have tendered my resignation at work. Chiari is making it far far too hard to stand up and talk to children for 5 days a week. It has got to the point where my behaviour management is suffering and I am just not delivering the kids what they need. Proper sad to be leaving but just gotta focus on feeling as well as I can =/

Wednesday, 16 May 2012

Hospital again this summer!

Spoken to my neurosurgeon this week. I will be having an ICP bolt done around the 25th ish of July, which is 4 days before my one year zip day! Hoping it shows something that will help with my headache!

Saturday, 12 May 2012


Got word that I need to go in and see my surgeon on Monday. I am really hoping he is able to do something to help these blinding headaches. I am really sick of feeling like this!

Sunday, 6 May 2012

Infection? Hospital?

I have some strange things happening to my scar this weekend.
I went to the doctors on Thursday because this headache is crazy bad now and I cannot do anything to stop it. My complaints included being unable to lay
flat, vision being odd and my scar having big feelings of pressure inside it. He spoke to my neurosurgeon who was trying to sort me out going in for a lumbar puncture I think.
Now since that, starting on Friday, the very bottom of my scar, which is where I had a leak before and where I had to have an internal stitch removed a month out from surgery, has been sore. It is like a spot, but not a spot, kinda hard to explain. It looks l
ike a spot in the sense it is a raised lump, but it just doesn't look like a spot other than that. Also, if I touch it my fingers come off a little wet, and I stupidly squeezed it to see if it was infected and loads of fluid came out, but all of it was clear. Over today it has got more tender and now if I touch it, it hurts, but kinda deep in my head not on the surface, again hard to explain.
So now I am worried it is either an infection or I am developing a leak. I have been sicker than normal, feeling unwell from the minute I wake till I am asleep and beyond. I have been having less time between waking whilst asleep, the other night
it was literally 15/20 mins before I woke up, it is driving me crazy.
Unless something changes I am going to ride this out till Tuesday to see a doctor!

This is my scar today, over 9 months post surgery

Saturday, 5 May 2012


It is less than 1 month until the UK's only chiari awareness walk. This is being held in Southsea. This is the 3rd year and, so far, looks like it will be the biggest! Last year we had about 20 people with chiari, plus many more supporters and it is growing larger by the year.

This years walk is on Sunday 3rd June, which is Royal Jubilee weekend (4 day weekend!!!) and also half term holiday weekend. The theme of this years walk is Royalty, so kings and queens and knights and jesters wanted. Come along in fancy dress, and enjoy our picnic and children's entertainment! For more details email me on

Now there has been a fair few of us beavering away behind the scenes to make this a success like the previous ones have been, and the one thing we seem to be lacking is raffle prizes. If any UK people can help, can you please shoot an email to

Thursday, 26 April 2012

When all else fails, teach people.

Chiari Carnival
Theme: When It Rains, It Pours.
Topic: Dealing with difficult people in addition to dealing with a difficult illness.

So since my chiari diagnoses it seems I attract difficult people. I need a sign, a big one, with flashing lights and maybe a loud noise that reads "I HAVE SOMETHING WRONG WITH ME.....HONESTLY"

I remember a day in the middle of summer 2010. I nipped to the shop to pick up some fish and chips. It was a nice day and I was taking it slowly, had a wonder around the supermarket across the road whilst waiting for the chippy to quieten down. Half way round the shop I noticed a lady, about 55 following me. She was looking at me strangely, but I didn't think too much of it. Maybe I had something on my face.
I went to the chip shop and the lady went and read a sign outside the church. Came out and she was still there, still looking at me. By now I was feeling a little strange. I walked to my car and as I was strapping Jacob into his car seat in the back of the car I heard a shout. Shockingly it was the lady.

"Hey, what do you think you are doing?" She shouted, with everyone nearby turning around.
"I'm sorry, what?" I replied, choosing not to shout.
"What do you think you are doing?" Raising her voice further.
"Going home" I replied, worrying for a second I had magically managed to open someone else's car and not noticed.
"No, you are not. If you get in the car and attempt to move, I will phone the police"
By this point I had walked a few steps towards her, not to be threatening, but to look at my number plate. Sighing with relief when I saw my distinctive number plate.
"This is my car, and I am fully insured. I am not sure what the problem is." I said, suddenly confused again after my short moment of relief.
"Drinking and driving invalidates your insurance and driving, not only with a small child in the car, but in a area near a school is dangerous" She said shouting again and clearly enjoying her small audience, and her moment of public service.
"I don't drink" I said, suddenly realising what was happening.
"I watched you" She replied, "I saw you almost fall over in Tesco, on more than one occasion and you were walking very slowly"
"I have a condition that causes me to wobble and stumble occasionally."
"Really?" She said, looking around at her audience who were looking less mob like and more worried about what was going to happen
"Yes", I said
"I still think I should call the police" She said, quieter now.
"Call the police" I said "However, would you bother if I was older? I may only be 21 but I could still be ill. I have something called Chiari Malformation. It causes the lower part of your brain to slip out of the base of your skull. The lower part of your brain controls balance, hence my falling. I am waiting to have brain surgery, to try and stop me getting worse. I am sick and the police are not the people to cure me. However, if you think they could help me right now, maybe train my brain to be smaller or teach it to balance me, then go ahead. However, police work is not quite neurosurgery"
I looked around at the 6 or 7 people who were looking at me, mouths open. I suddenly felt embarrassed, I was rude and didn't need to speak to a stranger in that way. I pride myself on being polite. However, my guilt vanished in a second. The audience clapped, congratulated me and walked away. 7 more people who knew about chiari, I though.
"Sorry" mumble the lady, suddenly quite, for the first time.

So, how did I deal with a difficult person. Well, I educated them. I told more people about chiari, people who may well have gone home and told family about my outburst. Sure, they probably didn't remember the name of chiari, or look up about it. However, I helped them change their mindset about people with difficulties. So, when all else fails, I do what I do everyday of my life, I teach people!

Wednesday, 25 April 2012

Another member of the Gibbons family!

World, meet Grace Lexi Louise Gibbons. Born 25th April 2012, at 4.17pm weighing 6lb 4oz. Born 4 days early but perfectly happy. I am now a proud Aunty and couldn't be happier! She is wonderfully and as cute as a button. 5 hours old and I have already posted 2 status' on facebook about her, 40 photos and now a blog. I just wanna smoosh her!
Photo above shows my brother and his fiancee, the proud parents!

Friday, 20 April 2012

funny list

I found a list that kind of describes my symptoms/problems but in a more light hearted way

You know you have chiari when

You can spell words like "syringomyelia" and "chiari" without thinking about it.

You sneeze and you feel like someone hit you in the back of the head with a bat.

Someone mentions "tonsil" and you immediatly assume they're talking about their cerebellum rather than their throat.

Your pride isn't the only thing thats hard to swallow!

You can honestly say that you have more brains than most people.

You are explaining to your GP what is wrong with you, rather than the other way around.

Someone says It's all in your head, AND THEY'RE RIGHT.

Your biggest concern of having brain surgery is "What will my hair look like?"

You keep looking for that bug that bit you or that hair that is on your arm and sticking you but you never find it!!!

Your brain has a tail.

Monday, 16 April 2012

Back to reality

So, after 2 years, 2 weeks and 2 days off sick, I returned to work today. It felt like I had never, ever been away within about 5 mins. Walked into school, had a few students say "Hey Miss" and that brought me back to 2 years ago, before I ever knew about chiari.
Sent 1st lesson in a meeting, 2nd lesson I walked around the school to get myself reacquainted with it. Break time, I had lots of people asking how I was, lesson 3 I did a big stationary order, lesson 4 I spoke to the school nurse about chiari ect and did a few admin bits to start.
Tomorrow I am observing a few lessons and then on Wednesday I might actually get back in the classroom!
So all in all, a tiering, but successful day! Back again tomorrow!

Thursday, 12 April 2012

Too little sleep

Had 4 hours of very broken sleep. Got woken by Jacob at 7am, took 3 attempts to stand up as I kept falling back down. Went downstairs 2 steps and promptly fell down the remainder of the stairs, carpet burning my arms, back and legs. Think I will stay sitting down for an hour or 2 before getting up. Sat watching children's TV and having a cuddle with my main little man. Makes everything better seeing him grin, so here it is to share to make you all feel better =D


Got a mega headache this evening. I will be getting up in 4 and a half hours and I haven't slept yet. This evening I have taken everything I can, in desperation. Amitryptline, buprenorphine, tramadol, codine, paracetamol, naproxin and nothing has helped.
Got a pressure headache, but the worst is, because it is so high right now, the back of my head where I had my big old bit of skull removed (my dippy bit) is swollen right out and making it hurt right around the edge of my bone, I can literally feel it there, all puffed up. I look like I have a deformed head, I am sure lol.
Wish I could sleep, I was pretty much asleep on Ivanah's sofa at about 2.30 today =/
Going to try and force my body into sleep ready to hang out with Jacob and Ivanah tomorrow, cannie wait =D

Homemade bracelets are back

Making bracelets again, for many conditions, but inspired by chiari. Go check it out.

Wednesday, 11 April 2012

Going back to work

I am going back to work, after 2 years and 16 days I will be returning on Monday. Doing 8.15-12.20 3 days a week for 3 weeks, this might have to change depending on how I manage. Then I will do the following 3 weeks doing a different amount of hours each day and then the first week after June half term I will return full time.
I really hope this works out, as I love my job!! I am very tired at the moment not sleeping tho of course, just feel fatigued constantly, but having my B12 injection on Monday arvo so that should boot me back into normality, I hope.
King's last week was nice, only 4 days in hospital and it was so much better organised than Southampton, everything was done at pace, but not so much so that I felt like I was being rushed out. Not too much to tell, wasn't exciting lol x

Friday, 9 March 2012

Being admitted to hospital.

I am going up to King's COllege Hospital in London on 1st April (not an April fools, I hope!) Going in on the Sunday, having MRI's/LP's and whatever other tests they want to chuck at me. Then, if my pressure is as high as it has been for every other LP I have had, I will be finally fitted with Steve, my shiny shunt =D

Tuesday, 28 February 2012

I have a rare disease, Jealous?

Welcome to the first Chiari Carnival celebrating Rare Disease Day.

Hello to any new readers.

Chiari is typically a birth defect that goes unnoticed for years or decades. When did you receive your diagnosis and how old were you?
I was diagnosed with Chiari on March 31st 2010 and I was 21 years old at the time at the time. I had been having symptoms for years but they all suddenly hit me then.

Many Chiari patients have been diagnosed with other conditions. Do you suffer from any other conditions besides Arnold Chiari Malformation? I have Pernicious Anaemia, scoliosis and High pressure.

Patients who have had decompression surgery are referred to as zipperheads. Are you a zipperhead and have you had any other Chiari related surgery? I became a zipperhead on July 29th 2011. This means rare disease day is my 7 month zipperversary I am currently awaiting surgery to fit a shunt, which should be very soon.

Western medicine focuses on medicine and medical procedures. However, many people benefit from 'alternative' therapies. What is your favorite non-medical/non-medicinal treatment for symptom relief? I have not tried too many things but I find massage helps with my back pain and heat helps with my neck pain.

Since Chiari affects the brain and nervous system some patients report symptoms which are difficult to describe. What is your most bizarre symptom? I don't think I really have an odd symptom. Mine are all pretty standard. One thing I do have is a VERY bad squint, one of the worst my eye doctors has seen. It isn't too odd, but is pretty extreme.

Dealing with pain and symptoms day after day can be very challenging and many state that their loved ones just don't understand. What would you like others to know about living with Chiari?
Remember that just because someone paints a smile on their face, it doesn't mean there is not pain hidden under the mask. I will often try and protect people I know by acting like I am fine, when really I am in bad pain. I am the typical British person, keeping a stiff upper lip, most of the time.

Attitude is plays a huge role in feeling healthy. What activities do you engage in to keep a positive attitude? I love to bake and sew. I also run a active chiari group on facebook, full of people who will drag me out of any dark place I fall into from time to time.

A great quote can remind us to keep the faith during those dark moments in life. Can you share a quote or saying that provides you with inspiration?
I love quotes, I have so many I could share. I will just find a few.
"I swim for brighter days,
Despite the absence of sun,
Choking on salt water,
I'm not giving in,
Swim- Jack's Mannequin

"Sometimes your circumstances suck, but life doesn't." Andrew McMahon

"Before I criticise someone I walk a mile in their shoes.
That way, if they get angry, they are a mile away and barefoot!"

Wednesday, 22 February 2012

Update on appointments so far.

Turns out I am unable to sleep quite yet (how surprising) anyway I was at Kings yesterday. Left the house at 7am for a 10am appointment (I hate London sometimes)
So I see the doctor who took a full history properly from me, went through everything. He told me I was complicated (I already knew that) basically, he said it is obvious that my pressures are still going crazy. He also did some crude eyes tests which show a marked deterioration in my vision since October. I am really upset about this because SGH had a chance to stop this and chose not to, that and I need my eyes.
I am had a CT scan today and he is going to talk to his boss doctor to check his plan, but basically he doesn't want to hang around with this as my sight is getting worse so quickly. He is going to get some records from SGH, and contact me in the next few weeks. He wants to admit me one day, do the LP and then if the pressure is high he will arrange a shunt to be done before I am discharged, within a day or two of the LP. Those of you who don't know I am in Southampton and my hospital is London, which is about 90 miles and so he doesn't want to do the LP, send me home only for me to have to come back up (spending £50 on travelling)
Also, my pulse has always been a little bit silly, goes very high with no reason to, pretty common with chiari. Yesterday it decided to play silly buggers whilst I was having the pre appointment checks with the nurse. Was bouncing around between 140 and 170BPM and they didn't like it, not with my normal blood pressure being about 95/50 ish. Anyway, Southampton ignored it but he sent me for an ECG this morning at the hospital and has put me on the books to see a cardiologist if the shunt doesn't reduce the pressure and make my heart behave!
So that is a rough guide of what has been going on.
I am seeing my eye doctor on Monday so will update on how my eyes are doing. Have a wonderful day!

Monday, 20 February 2012


So in the next little while I am having lots of hospital stuff done. I have a neurology appointment tomorrow, in London at 9.45, Wednesday I have a CT scan, next Monday I have an eye appointment and the following Monday I have an appointment (the only on unrelated to chiari) to arrange having my wisdom teeth removed.
All in all a fun time =/

Friday, 10 February 2012

The hardest post I have ever written.

21st August 1978- February 8th 2012

This week has been tough for me, in fact tough for many people in the chiari community. This week we lost one of our own, on of the best chiarians I will ever have the pleasure of knowing.
Heather Andrews was a fantastic, sweet, funny and all round amazing person. She chose to help anyone who needed it, without a second thought.
She spoke to me for what must have been hours when I was in hospital this summer. She normally succeeded in making me laugh in the dead of night and get me a right telling off from the nurses. She made me feel better when I cried and see the light at the end of the tunnel when I was at my lowest. We talked for endless hours about the surgery I had just had and that she was soon to have. She faced it with the same attitude she seemed to face everything else, showing only brief moments of uncertainty, normally privately and quickly slipping it into a discussion. She was one of the worlds special people that once you have spoken to, you want to cling on to everything they are saying. She lived thousands of miles from me, we never met. We talked about our connection with Ireland, her love of Guinness and my total hate for it, her love for brown sauce and my hate for it. I think she should have come from here rather than me. We talked about meeting when she came to Ireland or England. We talked about me NEVER going to Las Vegas because of my fear of gambling my every belonging away. She made me laugh till my brain hurt and recently cry till my brain exploded.
Heather had her surgery back in November, I remember getting excited when she like my comment on her wall the day after her operation. She went back and forwards from hospital, having 10 operations in the following 10 weeks and then last week she slipped into a coma that even a strong person like her could not fight her way out of. She passed away after doing the last selfless act and donating her organs. I for one will always remember her and though she has gone I will cherish what she taught me about grabbing every opportunity with both hand. So to a true chiari fighter, I <3 you!

Tuesday, 24 January 2012

New awareness product

I am hoping to very soon be sell pin badges similar to these. Please email me at if you are interested. They will be at the lowest price I can do them for, £2.50 each plus 50p postage for total order in the UK, $4.50 each, with $2.50 postage for as many as ordered, so if you order 5, you still only pay $2.50 postage, from the UK. Rest of the world can be posted to but just ask me for details.