Busy!

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 =/

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!

New awareness product

I am hoping to very soon be sell pin badges similar to these. Please email me at CLGibbons1988@aol.com 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.

Ahhhh

It is 1.49am and tomorrow/today I am meeting my new neurosurgeon. I will be travelling to London early in the morning to meet with him. I am very nervous but also excited and positive.
I am sorry updates have been bad, I have not had much to say!
Will write again tomorrow or Wednesday

Ink in my skin

Getting a new Tattoo the week after next! Excited as I am going with my brother so he can get his first. He will probs faint. I am getting lyrics (I know, I need to stop covering my body in quotes) This song means a heck of a lot to me. It helped me get through chiari, meningitis and 2 months in hospital. I listened to this on repeat anytime I wanted to sleep or switch off from the busy hospital. This is my marking to chiari, not the awareness ribbon, but rather a quote that sums up not only my journey but many many other people who are fighting this terrible, incurable condition!
"you gotta swim for the music that saves you when you're not so sure you'll survive" This song did just this for me. When I was in pain and crying, when I was so tired from medication being given every 2 hours round the clock, when I was in my dark place, when I was in a dexamethasone rage. This song was the soundtrack to all of that!

Getting away

So, I am taking a nice break to Dublin. I leave tomorrow and am going for 5 nights. I am looking forward to it. It will be nice to have some breathing space!

In other news, I have been doing physio now for a little while. My physio is trying to get my range of motion in my neck sorted, and wants me to be seen about dizziness and balance. She also wants me to try hydrotherapy.
I have my neurosurgeon appointment on 13th December. SCARED!!

Update!

I became acutely aware today that I have been neglecting my blog recently. I have to admit this is not the only thing I have been neglecting. I have been copping out on life recently. I have been feeling pretty down in the dumps that my surgery hasn't worked, but also, maybe stupidly, I feel embarrassed. I was so sure I would be fine after surgery, totally sure I would be "ME" again! This, alas, has not even been close to the case. I am in worse pain and cannot even be bothered to get out of my bed most days, days when I do manage to get out of bed that is such an effort that also getting dressed is almost out of the question unless totally required. People are honestly getting sick of me, sick of me being sick, sick of me not living my life in pace with them and sick of me being in pain and moaning!

So, rant over, I am seeing a new private neurosurgeon on 13th December so hoping he will help me out!!!!!

Post op MRI scan!