November 18th, 2010
I know it’s been awhile, and people want updates on my health since CCSVI treatment in Costa Rica. There is honestly nothing to tell… I read my last entry, almost 3 months ago, and it’s still pretty much the same! I know for sure that the symptom of painful spasms when I scratch is gone most of the time, as it hasn’t shown up much over the past month (just occasionally). So that’s something… but it’s not the 5 years of my life back I was hoping for! I was sooooo hoping I would go back in time and get some functions back. I went for a follow up Doppler last month, and he says I have “better” flow in my left jugular, but it’s not perfect. I have membranes in my veins causing blockages and “positional” stenosis that can only be fixed with stents. So I have some things to think about, a possible big fundraiser to organize and a trip to Arizona to consider if I can get the money… I am very confident about this Interventional Radiologist I have been talking to there, who has been working with veins for over 20 years. I really want to see her. I don’t think it’s Costa Rica’s fault I’m in this position, they have a great team down there but can only do so much, we are all still learning. I think I need something more specialized. And then what, who knows? It is so much more than just stenosed jugulars for many of us. All we can do is keep trying and hoping the neuros here loosen their grip and let the vascular profession study WTF is going on with our blood flow, veins, valves… and let us be fixed!
Tonight I am starting week 12 of 30 for tapering off sleeping pills (I decided I may as well go the 30 weeks and not rush it). Fingers crossed this works for me! Some nights I sleep better than others, but never as well as I’d like to. A few times I have caved and taken more than my tapering amount but I’m really trying not to! Last night was rough, but I would not let myself reach for another half a pill or anything. I’m down 6.0 mg/night from where I started, which is almost an entire pill (I used to take 2, sometimes 2.5 or even 3, some nights I was known to take 4). My prescription was 2 pills/night, so I’m doing really good now.
One thing I am really learning is if something is stressing me out and keeping my head spinning so I can’t stop thinking about it when I go to bed, I must DEAL WITH IT right away. I’ve resigned from being the Treasurer and webmaster/mailing list person for CCSVI Calgary. That was a full time job and it was making me crazy. Plus the President was driving me nuts and I don’t agree with how he does things, so I wanted my name removed from everything so I’m not associated with his screw ups!
Quitting that has been a huge relief and weight off my mind. So I have another job… being a boss! I’m finally on self-managed care. I was given a contract back in May for 30 hrs/week, but that was for all 7 days and was to include all personal care, exercises, meals, companion for outings, bedtime help, etc. etc. and I have been arguing with them about how that is not enough hours ever since. Well, to be honest, I didn’t think I’d need all that help after I got back from Costa Rica, so I really only started bitching about it in late July. I mean, one Handi Bus trip to the doctor and you’re looking at 5 hours easy, so I definitely needed more companion hours. After many phone calls, meetings, writing up my needs in detail, I finally got approved to keep my home care as is in the mornings 7 days/week (which is personal care, exercises, breakfast/lunch prep) and use the 30 hours/week contract to hire my own caregivers for supper/bedtime/companion care. That’s awesome! I’m so happy I don’t have to worry about hiring morning care, that’s the biggest job, and now I know someone will always be here, even on holidays. So I have hired a couple of fantastic ladies, one main one for outings and companion care, supper and occasional bedtimes, and another lady who lives right upstairs and can do suppers and bedtimes as well. She’s actually from New York City where she worked as a paramedic, and yes, she worked on 9/11. Well, she wasn’t scheduled to work, but of course she went to the hospital to see how she could help. Can you imagine… she lost a lot of friends that day.
They both started last month. They are GREAT, I totally lucked out with this! I’ve been able to do things like visit a friend in the hospital, go to my chiropractor regularly, shop at DIFFERENT malls and stores, and I’m starting exercise classes on the 30th. Next week I get to see Ghazi, the hairdresser I loved so much years back and haven’t been able to get to. I tracked him down (thanks, Facebook!) and made that appointment. A REAL CUT AND HIGHLIGHTS FROM A FANCY STYLIST! I can’t wait. It’s so nice to have a bit of a life again.
Although to be honest, this week sucks… Nancy, the lady I hired for afternoons, had to go down east suddenly for a week because her mother in law died (obviously these things can’t be planned). Gracie, my regular home care worker for mornings, had to leave suddenly to go back home to take care of her sister who has cancer (obviously, these things can’t be planned). It’s actually a good week for Nancy to be away because my home care has been scattered and LATE and it snowed so badly here everything/everyone is snowed in. I’m getting different home care every day again and it’s terrible (today was good, but she was a one time fill in). Who knows who’s coming tomorrow or what time or if she understands english/has common sense! This is why I’m so stressed and not sleeping this week! Gracie was also one of my back up caregivers for bedtimes, and my other back up is my friend Shawna who is in Hawaii, so with all those people away that leaves Thalia, the lady upstairs, to do suppers and bedtime until Nancy gets back. She can’t get sick!! Thank God she lives upstairs and can’t be deterred by weather and bad driving conditions.
Tonight we are going to see Peter Katz! Of course he brought a snow storm with him, as usual. Although he was here for a couple of days and we went for lunch (with Nancy and Thalia, her cute little girl and husband) on Nov. 2 and I didn’t even need a coat, so maybe it’s not 100% his fault.
I haven’t been updating my blog but I have been checking in on my 101 list and crossing things off. I think I’m doing well, and now that I have more help I’ll be able to get more accomplished
A couple more things I’ve been doing in the area of health and healing include Reiki and Body Talk. My friend Pam has her Advanced Reiki, and we decided to try regular sessions on me. This is pretty major, since she’s doing it for me as a friend, and the cost would normally be about $60 per session. I’ve had three so far, the weather ruined my chance yesterday as she was snowed in! I’m not noticing anything yet, as seems to be the way it is with me and energy medicine. I have something blocking me from allowing my body to heal, but it’s totally subconscious and hopefully with time we can break through it. Body Talk is possibly another way to get to the bottom of my health issues. I’ve had two sessions so far. My body talks a lot and tells her what’s wrong in certain areas and why, and it’s been accurate as far as I can tell, (in terms of where my pain is and weaknesses). My body also said it didn’t like the perfume in my deodorant (so I switched to unscented) and the filler the pharmacy uses in my sleeping pill capsules (they make them with the tapered amounts) so I got that changed, but who knows. None of the “tapping” techniques she uses to fix things has done a damn thing but constipate me terribly so I don’t think I’ll spend money on another session. We’ll see. I’ve added 2 Tbsp. of flax seed/day into my diet to deal with the constipation (it works!) and started taking Serrapeptase again at the urging of my friend Gail, who swears by the stuff. I’m hoping it will help with my unbearable stiffness everywhere, and pain in my hips and back.
Let’s see, what else… kitties are great, the vet saw them on Tuesday and they’re fine. Pita has made friends with Nancy and Thalia and although it took Pepper a few weeks to get used to their visits (she always hides from strangers, unless they are sent from the home care agency… she totally knows) she comes around now. It helps that they are good with the kitties! Thalia’s daughter is 19 months old and sooooo cute, and likes to come down and see Pita (and me, apparently she says my name a lot ). She has a stuffed cat that she has now named Pita.
My brother’s girlfriend painted me the most gorgeous sunflower painting ever! She is a fantastic artist. You can see her gallery here but I need to take a picture of my painting, which I would do right now while I’m thinking of it if my camera battery wasn’t across the room charging up for Peter’s show tonight.
Let me publish this before it ends up in my “drafts” for another month!!
Me and Peter when we went out for lunch on the 2nd