June 13th, 2010
There are so many people on my Facebook friends list that are getting Liberated these days, I can’t keep track! I feel bad for the people who are just looking into it now… the waiting lists are insane. I was relatively late in the game to sign up for treatment but at least I’m not trying to get on lists now and being told I’ll be waiting until 2011. I’m sure Dr. Simka in Poland (the most well versed in this) is 2012. One month for me! One month until Liberation! Hopefully more clinics keep opening. It doesn’t look like they’ll be allowing it here anytime soon.
With the help of family and friends I have received about $8,000 of the approximately $20,000 I need for this life saving procedure. It’s like I read in a newspaper article yesterday, the 5-10 years of research they want to complete before they’re willing to make it available to us is JUST.TOO.LONG. “People will be in wheelchairs by then, and those already in wheelchairs will be dead”. Enough said. I’m going to save my life. I swear I am getting worse by the day, especially if the past 24 hours is any indication, so Liberation cannot come soon enough.
Besides the crapfest which was the past 24 hours, a new symptom has reared its ugly head in a whole new way (it used to pop up sometimes… now it’s life altering). OXYGEN. By the end of the day or when fatigue sets in especially, I’m not able to hold a conversation. The exertion is too much for me. I have trouble taking decent breaths and choke a lot more than I used to. These are definitely symptoms of CCSVI so I hope they clear up after Liberation. I found out that my severe morning hiccups are part of this, too! Good to know. Various home care workers have told me it means “someone is thinking of you” but I don’t know who would be thinking of me at approximately the same time every morning.
Speaking of home care workers, the one I had today to help me get to/from the mall told me a little about her life. She married her cousin when she was 19. Her sister married a cousin when she was TWELVE. Both her brothers married cousins. You see, they do not marry “outsiders” and keep it in the family. Hmmm….
Well, I guess we are all related, as Dr. Wayne Dyer puts it: “Two people made you, four people made the two people who made you, eight people made them, etc. etc.” so if you go far enough back, we are all family. But STILL.
My friend Heather came over on Tuesday to watch my morning routine with Grace so she sorta knows what to expect in Costa Rica. I picked up our tickets today. My passport arrived on Monday (another scratch off the 101 list!). It’s all happening! Heather swears up and down she will not get sick before we leave. I told her to take Cold FX every day, I will buy it for her, whatever! Just don’t get sick! She says she won’t so I will believe her.
Part of my rough 24 hours happened last night when I almost fell. Falling for me now would be an even bigger deal than it ever was in the past. Anyway, I can barelyifeven walk without my AFO on, so after home care leaves (she removes it) I like to use my Chi Machine and then I need to lock the door behind her, then make it to bed in one piece. My Chi Machine is acting weird lately and moving across the mat as it shakes, and last night was really bad so I gave up because when it moves it hurts my ankles (your leg position is important with that thing, if it doesn’t stay still it may be time for a new one… well worth the price). Anyway, I got up and walked to the door and thought “man, this is getting harder again”, locked the door, slowwwwly turned towards my bedroom and stumbled. I JUST managed to save myself by landing with my back against the wall and slamming the breaks on my walker really fast. My cell phone and water bottle went flying and I could feel myself slipping. I was thinking, “oh no, here I go” and wouldn’t that have sucked, with my cell phone out of reach! But I put as much weight as I could on my right leg to pull my left foot into a stable position. Then I made it to my bed and collapsed in tears. Those “holy shit, that was close” kinda tears. With my water bottle on the floor in the hallway (which I need to take my night and morning meds) and me afraid to try walking again, I knew I had to call someone (phone on bedside table, thank God). I chose Shawna because a) she’s an awesome amazing friend and b) she lives close and has keys. So I called her and felt like an idiot asking her to come help me for what seems like a silly reason! Of course she came by and helped me get settled. How pathetic would you feel if you needed someone to drive over to your place because your water bottle and cell phone is on the floor in the hallway? Yeah. Welcome to my hell.
That was yesterday, and today I had another “accident” with my bowels. Fourth time in two weeks. Seriously about the worst thing that can happen in your day. I’m still waiting for my evening home care to come and clean me up. It happened about 5 hours ago. So, yeah, not a great 24 hours. And tonight I am not using my Chi Machine or walking without my AFO. I will take it off myself while sitting on my bed. I’m not feeling so steady.
Tomorrow is another day.
And so it was. The above was written on Thursday, and Friday was a MUCH better day because I got to go see THE POLYJESTERS!!! I did feel stronger in the morning but by 2:00 I was done for the day. BUT you don’t miss an opportunity to see The Polyjesters when all the help you need is willing and able to take you. Shawna came by around 6:30 and we got me all ready and out the door. Getting to the new Ironwood location was a hassle because the sidewalk was not wheelchair accessible (must call the City about that) and then once inside I found out the venue itself is not the wheelchair accessible place I was promised by the staff it would be. The bathroom, according to Shawna, has a W/C accessible stall. BUT, there is a step to get INTO the bathroom, so WTF good does that do? Good thing I wore my “justincase” Attends underwear. Plus, the bathroom is right at the front door, and there is no way in hell to get from your table to the bathrooms in a wheelchair once you’re in. I had to roll behind the bar to get to my table, and then was told “oh! We thought you’d come in the back way, there is a ramp beside the stage and your table is right in front of the stage”. So I had a great table, and sure enough there is a ramp beside the stage heading to the back door, BUT, as we found out when we left that way, the ramp leads to the back entrance where there is a gigantic step (that’s STEP) down. Luckily when I cried out “oh no, a STEP!” Jason and Aaron came over and assured me they could carry my chair down it. So I closed my eyes and let out a little yelp as they brought me safely to the ground. Remember, not exactly 90 pounds over here.
Accessibility (and the fact yet another restaurant doesn’t understand what “gluten free, no bread with my steak sandwich” means to a person with Celiac disease like Shawna) aside, it was an amazing show!! My mom and Bob joined us, and I got to see my friend Kim and her hubby that drove in from Red Deer. And a few other Poly Regulars like Damien and Kelsey and the PolyParents. The show was one of the best I’ve ever seen! Scott Duncan was there to join them on fiddle for several songs, including their “Orange Blossom Special” they used to always play when they were regulars at Epcot Center in Florida back in the day (called “Fiddlestix” back then)… complete with a medley of Disney tunes and corresponding dance moves. If you GO HERE you can scroll down and preview a taste of it, song #9. But that won’t be enough, haha! Preview song 8 too, and tell me you don’t want to see that live on a stage right in front of you! I want a Scott Duncan on my speed dial. I also have a photo of him from 2004 licking his own nipple. I need to remind him of that.
Anyway, in case that isn’t enough of an indication, it was a very high energy, fun and mind-blowing show. I lasted with my head up the entire time, but left the second the show was over. Made it home in one piece and was in bed at 1:00 am! Mom and Bob spent the night here and we all groaned when home care showed up at 9:00 am.
Now it is Sunday, and the past couple days I have decided it’s not worth the risk of walking without my AFO, so I haven’t used my chi machine at night and keep my brace on right until I get to bed. I am better able to walk in the morning, after a night of rest, so getting around until home care puts on my AFO has been okay. Also, for my morning Chi session I found a cushion I have fits perfectly between the machine and the wall to keep the machine from shuffling away, so that’s good. I do hope the problem with my foot/leg is temporary (again) and I’m able to walk (again) soon. The EMS has to get working for me (again!) We took a break from it when my bladder was too crazy and we forgot to get back into using it. So we fixed that today and No More Breaks!
CCSVI update: I just got another call from my BFF Dr. Kirsty Duncan, the awesome Liberal MP who is working her arse off for us (she has not gone to bed before 4:00 am the past two weeks). I had sent her an email about what that MS Society funding of CCSVI research really means (what a joke) so she could be up to date before the debate tomorrow in the House of Commons. She’s also aware of the situation with Barb Farrell (that’s manslaughter, plain and simple) in Barrie and has lots of personal stories to talk about. The more stories that get out there, the better. Soon even the general population that isn’t affected by MS will sit up and take notice. I told Kirsty I’m booked into Costa Rica for treatment July 10 and I thought she was going to fall out of her chair, she was so excited for me!
I want to publish this before my evening home care arrives, which will be in about 10 minutes! Ciao.