Monday, 23 April 2012

Tigger's getting her bounce back!

Good morning!

I need to apologize for leaving you all "up in the air" with my progress. Unfortunately for me I was literally unable to continue posting due to severe vision issues. I had a pair of special glasses made with prisms to help with the close range double vision. Apparently I had the worst case of double vision they had seen in a patient so young. When I went to get the glasses made they looked puzzled and asked me if the opthalmologist had made a great error! I assured them, no, I was just a very "special" girl hehe! I like to call the glasses my "Gok Wans". For those of you who don't know who he is, here's a visual lol....

Trouble is, when I wore them I could only look at anything within 18 inches of my face. Anything beyond this point was extremely distorted. So I decided to take matters into my own hands (not like me I hear you say! *giggles*) and do some pretty hard eye exercises I had learned from way back in my Yoga days. I had been told in no uncertain terms NOT to try and do this because of the tumour's location (ie near the optic nerve) but my logic told me my vision was surely deteriorating due to the lack of usage my eye muscles were getting for some time. I also worried that to rely on these new Gok Wans would further render the muscles useless as they "simulate" the muscles focusing the eyes together using the prisms. So I tried. Good GRIEF did it hurt at first. Felt like someone was searing my eyeballs with a red hot poker but I persevered (no pain no gain and all that jazz!). I told NOBODY of my secret exercises, not even hubby at first. Sure enough, over the next few weeks, the pain was subsiding when practising the exercises so I then tried to read a book for just ten minutes each night. Something I had dearly missed for months. I LOVE my books! I had to really really force my eyes to focus to stop the words dancing their way all over the pages. I almost gave up at this point but for some reason carried on. To my great surprise I managed a full chapter of a book! I couldn't believe it! Not a Gok Wan spectacle in sight!

I had a follow up appointment with the Orthoptics Team and she kept smiling to herself whilst repeating all the tests I'd had done four months earlier (it was now February, almost a year to the day since my tumour diagnosis!). I asked her if all was OK (I was secretly praying for some evidence of an improvement as I KNEW my vision was improving) and she said she felt it would be safe for me to try some eye exercies at home. I then confessed. I told her I'd been very naughty and that I'd been doing my own exercises for about 6 weeks every day. She was interested to find out exactly what I'd been doing so I explained about the yoga and demonstrated the five I'd been doing. They were almost the same as the ones the hospital give to their patients hehe! She told me she wanted to see me in two weeks time and as I got up to leave I asked her if she could give a rough idea of how much it had improved. She said "I can tell you EXACTLY how much, look at this measuring scale, you were here last time (right at the furthest away point) and now you are HERE". I was around EIGHTY PERCENT up the scale! OH MY GOD!!!! Unfortunately I missed my appointment due to my awful memory issues (I went on the wrong day basically lol) so I now go back on May 1st and I'm intrigued to see if there's been any further improvement! I'll let you know!

My largest problem throughout this past 16 months has been what I now know is Epilepsy. Apparently around 90% of ALL my symptoms stem directly from this! Unbelievable! It was in fact, the Epilepsy (although this was not diagnosed until around July last year) that gave me the left sided numbness and led me to have the MRI that discovered the tumour! So after weeks of total denial that I had Epilepsy I decided to thank it for finding the tumour! I've now had five brain scans in total. Four MRI's and one CT Scan (to check for any calcification). My last MRI concluded there has been no change and the Neurosurgery Team have all agreed I'm safe to monitor in one year. I'm more than happy with this as surgery for me is out of the question. It would take 6 hours to perform a biopsy alone and is considered major surgery. It carries a 10-20% risk of death (compared with around 1-5% if it was in a different part of the brain), could leave me with even MORE sever symptoms (such as paralysis) and then (if they found it to be malignant) I would have to undergo a second surgery to remove it. So I'm happy to put my faith in their expertise and see how things go. When I first found out I had the tumour I just WANTED IT OUT! OUT OUT! Perfectly normal response I'm sure, but for me it's not so simple and "probably benign, low grade" sounds better than dangerous surgery at this point. It may never change so why prod it about eh? It's verrrrry close to my brain stem. So, yes, the Gremlin can stay if it behaves itself. I tell it every day to be good and so far it seems to be listening. ;)

Back to the Epilepsy side of things. I was having 4-5 seizures per DAY at my worst point. The brain has to work very hard to repair the damage to cells the seizure causes. Having so many every day rendered me totally useless. Literally. I was unable to function. Just as I began to feel better (all you want to do is sleep for a week once the seizure has finished) I would have another one and the cycle began again. I was living is a daze, like a real life zombie from one if my sons Xbox games! Getting the diagnosis was a HUGE relief because I (understandably) thought all this was a direct symptom of the tumour. So medication began.... I started off on Keppra, one of the newer drugs (AED's - Anti Epileptic Drugs). Within three weeks of beginning to titrate the dosage up slowly I noticed a problem. RAGE. PURE RAGE. I wanted to murder people! EVERYTHING irritated the hell out of me. MY GOD I felt horrendous! I titrated the dose up three times thinking the side effects would subside but they just got worse. The only saving grace was that I KNEW I was behaving this way. It would've been even worse had I not been able to realise I was behaving this way. My poor family really went through it whilst I was on this drug! So I called the Epilepsy Nurse (explaining that my husband would file for divorce if I carried on behaving this way lol) and she told me this was a common side effect and that is DID NOT subside, only increase every time the dose went up. So I began to decrease the dose immediately. I was then put on Lamictal but the crossover period was pure hell. I had to be fully off the Keppra for a couple of weeks before I could introduce the new drug. I've never had so many seizures! Good news is, the Lamictal seems to be the one for me. Every time I upped the dose, I felt like I'd been hit by a truck for a few days (flu symptoms, aches, pains, headaches etc) but I persevered as they were controlling the seizures little by little! I was warned I may never gain full control of my Epilepsy as it's one of the hardest types to control so when I went a full week without one I was ecstatic! I then had another which really upset me but one a week was WAY better than 4-5 a day so I assumed this would be how it would stay. Nope! I continued to up the dose with the help of the Epilepsy Team (who have been FANTASTIC throughout) and I'm now at a dosage that seems right for me. I AM OVER THE MOON TO BE SIX MONTHS SEIZURE FREE! If I continue to be seizure free I will be able to drive again on 20th November this year! I'm halfway there peeps! WOWWWEEEEEEEEEEEEE!!! There is only ONE trade off to my seizure free life.... Arthritis :( But I consider this a fair trade and am trying to manage it without all the harsh drugs they offered me. Strong anti-inflammatories that require another drug to counteract the sickness they induce. NICE! No thank you sir-ee-bob! So they are still sitting in my kitchen cupboard! It is painful down my spine, in my neck but most of all in my knees. My right knee is in constant pain, I cannot bend it much these days but this is a teeny tiny issue on the grand scale of things.

So, that's me up to today! I feel BLESSED to be typing this. I can SEE, I can FUNCTION, I am SEIZURE FREE, I am ALMOST TIGGER AGAIN hehe! Tigger's getting her bounce back and loving every minute! Most importantly (for me) I am SCULPTING AGAIN! Sculpting is like breathing for me. A necessity, a way of life. I have missed it with all my heart and soul and never thought the day would come where I would be sitting in my studio sculpting again.

I've redesigned my website from scratch if you fancy a peep at my profession:

I'm trying to raise funds for Brainstrust who have been the biggest help to me throughout my journey. They are AMAZING so I am holding a raffle for one of my unique sculptures. Tickets are just £2.00 each and the winner will receive Alexii. Please do share the link to my raffle page (or even purchase a ticket or two!) as the more I can raise, the sooner I can draw the raffle and give the proceeds to Brainstrust! :)

If the Gremlin (and his hairy butt) chooses to be a little sod then I'll cross that bridge when I come to it. Live for the moment. You never know WHAT is around the corner, you really don't.  Thank you all for sharing my journey with me (sorry it took so long to update!).

Last but definitely by no means least......   Luv u Pops, you're amazing and I luv ya sooooooooooooooooooooo much! Mwah!!!!

Bye for now peeps!

Clare xxx