Now

Summer sue

my next visit with my doctor was on wednesday, december 5. i was really looking forward to this appointment. i had just had visits from two lovely old friends over the weekend, which really did me the world of good. it was so wonderful to chat to like-minded people again, people that i hadnt seen in years and who didnt think that the pinnacle of the weekend was to go out and get fucked up. it was great to feel that i was loved, that i was interesting and fun to spend time with. that there were people who wanted to see me and didnt mind driving all the way to my house. this bit of social interaction coupled with a wonderful family braai for my sister's birthday on sunday, december 2 made a fantastic start to this month. i also started feeling that my relationship with my sister wasnt as icy as i thought it was after i gave her my old, but still very nice, digital camera for her birthday on tuesday, december 4.

but back to my latest doctors visit. i saw my lovely doctor with the good news that i had come off the baclofen without a problem. "excellent! then we can take you off the phenytoin next." it will take 3 weeks to get me off the phenytoin, but so far so good! and once i am off the phenytoin i can drink! now, i havent drunk alcohol in a year and by now i really dont miss it. especially after seeing how stupidly people act when drunk. this is a bit of a sore point between colin and i as he still loves to drink and take drugs whereas i just see it as pretty pointless now. but it will be nice to be able to have a glass of wine for christmas.

"what cant you do now that you would really like to do?" asks my lovely doctor. he guessed maybe driving?! hell no! i wanna be able to WALK further than 1 km (my maximum distance right now). i wannna DANCE! and i really, really wanna be able to have SEX! and to this end i am trying to push myself a bit more. i tan almost every day, which just makes me look and feel good. i swim after i tan. i try and walk around more and do more physical things than i used to. i am also trying to put myself in more social situations to try and train my brain to deal with all the noise and distraction again. i am coming off meds and i am trying to strengthen my brain. COME ON BRAIN! stop fucking around with me now, PLEASE! please, let me be normal!

so, everything is moving along smoothly and slowly, but i will only have a final angiography in february 2009 to check if my AVM has been completely obliterated. i will be 28 years old! of course, i am hoping to get better before then, hence all the 'brain training'. i dont know if i can handle another year of this.

but my old friends have slowly been coming to see me and with each visit i feel stronger, more positive, more normal. in fact, this week i have quite a busy schedule what with visitors every evening and then my cousin (whom i havent seen in 10 years!) is arriving from england on friday, december 14 and we are having a family braai (bbq). and then i am going out for dinner with a group of friends on monday, december 17 and i'll be damned if i'm gonna let 'the little bugger' stop me! colin is still being supportive and visiting me often, but he does now want me to start visiting him. we have had a few talks about the future, but that is for another post.

Mirrors

oh and, i have also found a positive to all the disruption caused by the workmen redoing our bathroom. they took all these square mirror tiles off the wall, which i have been playing with for my photography. i think i have taken some fantastic photos already and i cant wait to see what else i can come up with.

finally, the last convulsions that i had were on wednesday evening, december 5. they were scary, but i took a xanax and they only lasted for 15 minutes. one thing that i have to keep telling people and reminding myself is that, yes, i am perfectly fine now. but my recovery is not linear, i go up and down. at the moment i am on an upswing and i'm gonna see how far up i can go, but i am nowhere near the top of the mountain yet. the stupid thing with me though, is that the more of the summit i can see, the more impatient and frustrated i get with my body and my brain.

Then

1 November - 30 November 2007

Sis, me and mom

so, i have described how emotionally stressful and weird it has been for me returning home, but now i would like to start moving forward with my narrative. the month of november was full of changes, revelations, resolutions and readjustments.

i met my new doctor for the first time on wednesay, november 7. he is what is called a 'neurosurgeon interventionist', which from what i understand means that he is trained as a neurosurgeon, but he is also able to do the job of a neurologist, which is following a patient's case on the clinical side and dealing with medication etc. so, he is not just a 'slice and dice' man. he is a lovely man. warm and friendly, he puts you at ease immediately. and he is one of the most respected in the country. so, once again, i was very lucky to get a fantastic doctor. he was very funny and found my case bizarre and interesting.

eg: everyone knows the standard reflex test that a doctor gives you where you get tapped on the knee by a hammer and your leg shoots forward. now, when this test is administered on me the whole side of my body does this jiggle and shake collapse all the way from my shoulder. when my new doctor saw this his eyes lit up like 'a kid in a candy shop' and he asked shyly "please may i do that again?". there were all sorts of other things that he found fascinating about my condition, mostly to do with muscle tone in my joints and my many other symptoms. i asked him about the constant popping that i experience in my ears and he just gave me a whimsical smile and said, with a wink in his voice "let's just leave that one for the moment, shall we?" why?! because he has no idea why i have that particular symptom ;-).

but the best thing about my visit to my new doctor is that he was adamant that i should slowly start coming off ALL the medication that i have been taking for so long. "do you think they're helping?" he asked. ummm ... NO, actually. so, the first drug i was weaned off was the baclofen. it took a month of me slowly reducing the amount of tablets i take by one a week. by friday, november 30 i was off the baclofen for good with no problems. it actually made me feel better to be off it because, of course, all these drugs that i am taking can actually cause a lot of the symptoms that i already suffer from like nausea, seizures, imbalance, loss of muscle control etc etc. the other fantastic thing about finally being off the baclofen was that i now only had to take medication twice a day rather than 4 times a day. sometimes i still get anxious around lunch time thinking that i should be swallowing some pill or other, but NO, i dont need to. HOORAY!

however, i still got really sick in november a few times where i had hour long convulsions and was vomiting etc. on thursday, november 15 i had terrible neck spasms and full body muscle stiffening (extremely painful) and was vomiting thanks to uncontrollable stomach spasms that made me rock backwards and forwards very quickly, shaking my whole body. this is of course accompanied by fantastic waves of nausea. the reason for these horrible spasms were discovered thanks to my mother, who is a nurse. i had been taking these headache tablets that were packed with ibuprofen and aspirin. my stomach is very sensitive at the moment and it was actually the headache tablets that were making me vomit. so, now i take paracetamol, which is very gentle on the stomach.

on monday, november 19 i went to stay at colin's house for a few days because my mom was having the bathroom ripped apart and put back together, which threatened to be very noisy. i was very upset about this at first as i felt that i had come home to get away from the noise of construction only to have it follow me into my very own house (they are still working on the bathroom now, actually). anyway, by tuesday, november 20 i was sick as a dog. my nausea was so bad that i couldn't get out of bed all day and i was having horrible convulsions and vomiting again. why?! i think it was a combination of stress and rich food. my grandmother (dad's mom) had had her 80th birthday lunch on sunday, november 18 and i had eaten loads of rich food and then i went to colin's house where there was no salad and ended up eating way too much pizza. i think all of this combined to make me horribly ill. the worst thing about it was that an old friend of mine was supposed to come and visit me on tuesday night and i had to cancel 45 minutes before she arrived because i was vomiting, crying and shaking on colin's bed like a rag doll. i also had to cancel with two other old friends who had planned to visit me on wednesday, november 21. i was driving back home with my mom at the time that they were going to visit.

having to cancel these visits was really awful for me. i was feeling terribly lonely and isolated, while colin was running around partying and seeing friends, i had been (and still am) desperately trying to get into contact with old friends and cajole them into coming and visiting me. i feel like i am constantly doing PR work to promote myself. bugging people with sms's and messages over the internet basically saying "hello! i'm over here! come see me! PLEASE!" but colin was/has been great about visiting me and slept/sleeps over at least one night a week, which makes me happy. especially since i kept stressing about him going out to clubs, getting fucked and then finding himself in bed with some beautiful cape town chicky before he even realised what he was doing. it's not that i don't trust colin, but i don't trust intoxicants like drugs and alcohol that make you forget who and where you are. of course, he would never do anything like that to me sober. i know he loves me, is devoted to me and i love him, but that little bit of insecurity is still there sometimes. i cant go out and party with him. we still cant even have sex. seriously!

but on the social side i did manage to spend time with my grandparents, both my dad's mom and my mom's parents and my uncle (mom's brother) and my aunt (dad's sister). and i really love their company. my family has become incredibly important to me after being away for 3 years and then getting sick. unfortunately, i was still struggling to connect with my sister and her boyfriend. but then, my sister and i have always been very different people. she is quite anti-social and i'm not sure she really likes me that much (even if she has to love me ;-).