May 29th, 2011
i’m here to explain why i haven’t updated for months. also i’m still one handed on a macbook keyboard so the shift key to make caps is hard to reach so i’m still typing like this.
after two CCSVI treatments and loads of debt, i’m sad to say i am worse off than before. not because i don’t have CCSVI - i sure as hell do - but my veins are so screwed up that when they tried to fix things they actually made things worse. and because they don’t allow the treatment in this country, i can’t see anyone for follow up and fixing unless i pay to go somewhere again. it’s very frustrating and breaks my heart. all that hope, belief, effort and MONEY just to end up WORSE. i am very sad and have withdrawn a lot. my jugular veins are in worse shape now (i think the azygos was fixed up though, and i have a stent there. it should all be well) and totally collapse when i lay down, so i have NO blood flow when i’m in bed (as opposed to the little bit i had before) so it’s no wonder i wake up each morning stiffer, more spastic, worse vision… my bladder doesn’t empty ever and i think i’ve had about 4 infections in as many months and my mobility has gone downhill fast. i don’t even go for my little hallway walks anymore, it’s too hard. it’s all rather depressing.
since my life these days revolves around caregivers (i’m rarely alone), my bladder and my bowels, there isn’t much to talk about on here. “today i spent the day going back and forth from my lift chair to the commode, and watched TV” is not a very interesting blog post. but that is my life. i can’t even wear pants because it’s become too hard to pull them up and down with one hand. especially when you’re doing it sometimes every 20 minutes.
i tried the indwelling catheter thing. i hoped it would give me a little more freedom, to wear full clothing, go out, spend the evening in my power chair (which i need help getting in and out of) and boot around my apartment. but two good 24 hour attempts at that didn’t work out, my body totally rejected it and made everything worse (plus it caused painful bladder spasms and a hell of a lot of discomfort), so that plan was dropped. also with bag emptying, changing, cleaning and tubing everywhere it didn’t actually give me the kind of freedom and ease of life i’d hoped for. My doctor is very happy (he didn’t want that in the first place, infections galore, but he doesn’t live my shitty life!) and wrote an order for in and out cathing, which is making a huge difference but will take awhile to get set up. Caregiver training/supplies and all. But the few times I’ve tried it has allowed me to sleep for several hours straight or go an evening without needing to get up every half hour. The ability to empty your bladder is not to be taken for granted.
so, that’s why i haven’t updated. the reason i decided to now, is because i was inspired by a couple of things - oprah’s last show (THIS is my talk show, this is how i contribute, share, be heard… it’s my stage) and the facebook profile by a fellow MSer who calls herself a writer, and updates her blog daily, and only has use of ONE FINGER so what is my excuse, i have an entire hand! aside from the fact i am rarely alone and able to write, i do have some time (especially on weekends) to talk about whatever is on my mind. when i pull myself out of my pity-party funk i expect i’ll have other things to talk about.
i will talk about my trip to california soon. it really was fun, so much better than costa rica. we had a great time and i hope to go again someday. i will actually go for treatment #3 at some point, probably there again, when the doctors know more and can actually fix my veins for real. and when #2 is paid off… $8,000 to go. i actually worked hard, with a couple of friends, to put together this fantastic music compilation you can download to help raise some money. please pass the link around, 23 artists donated over 90 minutes of music! I have the greatest friends on earth:
I’m sad that The Good Lovelies were not able to contribute. They have been on tour constantly and probably didn’t have time to clear a song with their publisher and record label and all that. but aside from missing them, we got a great batch of artists. even Jeremy Fisher wanted to be involved!
next up i’m going to post about my excellent trip to CA, rob szabo’s overnight visit, my new ipod touch, my new food plan (it’s been a month of no dairy, sugar, eggs, gluten; daily kale smoothies and lots of green drinks) and lots more. i guess i do have a bit more going on than just peeing but some days that’s all it feels like.