May 18th, 2010
It looks like I’ll be getting a whole BUNCH of the stuff on my 101 list done over the next month or so, because…
I AM MOVING!
If you can believe it, finally. After 7 years in this place with the 70’s mod yellow/gold floors and yellow counters and 20 year old carpets and 25+ year old gold stove and scratched up gross brown kitchen cupboards and every wall in DIRE need of a fresh coat of paint.
Where am I headed? Well, kitty corner, to the building across the parking lot. Just a few feet away, but a world of difference. The rental office called me and said “good news, a wheelchair apartment opened up! I’m giving you first dibs.” I went over to look at it that afternoon, and was sold immediately. Wider doorways, HUGE bathroom, nice flooring, nice counters, bright, white kitchen cupboards and all white appliances, newer carpets with an actual UNDERLAY (presently missing from mine. Oh, WHY did I waste money getting them shampooed recently? They are just going to rip this place apart when I’m out).
When they called and told me about the new apartment, I got excited also because I figured I’d get a new view. Right now my patio door windows show me the parking lot and Sears. So I get to this new apartment, open the patio blinds and see… parking and Sears LOL. Actually there is more grass because my new patio doesn’t exactly meet up with the parking lot like it does here, but you see it. And the side of the old pool house which is now the garbage area, so I guess you could say the view is no better. Time will tell if the sun beats in there like it does here… I have a feeling it will. But soon I shall be LIBERATED and maybe the heat won’t bother me as much? Yeah!
Speaking of, the MS Clinic called me recently to book an appointment to see the physiatrist there next month. I said “I don’t think I need to see him for any reason” and they were all, “oh?” and I said “I’m actually going the CCSVI route so I don’t think I’ll be back to the MS Clinic.” She was all “oh, okay, stutter stutter hang up”. I mean, in all honesty, the only help I have ever received from the MS Clinic was from the physio/occupational therapists at the OPTIMUS program. My neuro hasn’t done a damn thing for me when I really look at everything over the years. You always feel like you are doing the “right thing” by making annual visits to the MS Clinic and seeing doctors there, but when I break it down into anything useful… there is nothing. NOTHING. They run you around to see other specialists and prescribe drugs to try which obviously makes them feel useful, but all of this has lead to no improvement in my quality of life. I really don’t see why I would ever go back.
I have been in touch with Bulgaria, Poland, Germany, Scotland, Mexico, New York and Phoenix, AZ about treatment. I will be going SOMEWHERE, one day soon, to be Liberated. I really need to get my passport so I’m ready to go at a moment’s notice. I will be getting my own copy of my Doppler ultrasound and the Interventional Radiologist’s interpretation SOON, (it was due over a week ago, but the only doctor there that can actually interpret the results was called away on a family emergency so all is delayed) and will start shipping copies around! So even if my own doctor can’t help me, I will find one who will. Stupid Canada. We’re all leaving to get this done elsewhere because you won’t allow vascular doctors to do their job. We would pay for it out of our own pockets to have it done here, but NO. We can pay to have boob implants and take those risks, but a simple venous angioplasty (that is done on people without MS, on the same veins, every day) needs double blind studies while our MS gets worse. Sigh.
So, my bladder. I know you’ve been dying to hear. Turns out Mz. Drama Queen had a bladder infection and a few days of antibiotics cleared it up and things are back to normal. Which is not GREAT, but at least I don’t need a catheter. And the only reason I found out is because my Home Care Nurse insisted I get a urinalysis before getting the catheter, “just in case there is an infection” and I was all, “I DON’T GET BLADDER INFECTIONS! I DON’T HAVE AN INFECTION, I KNOWWWWWW IT!” and she was all “just get your doctor to fax a requisition and pee in the damn cup”. The next day my doctor’s office called and said “the test came back positive for an infection, where do you want us to call in the prescription?” and I was all… oops.
I am worried about my buddy Nick from the care centre. We keep in touch on Facebook. He has moved into the long term care on the first floor and I would like to go visit him one of these days, bring him some Peter’s Drive In. Anyway, he went in on, I think about May 6, for his neck surgery. His hope is that this surgery would enable him to move his limbs again and maybe even get out of that place! He announced he would be in the hospital 4-5 days and wouldn’t be online. Well, it has been more than 10 days and still no peep from him. I hope he’s okay! I guess I could call his unit. Not sure if they give out that sort of information on the phone, but maybe they can at least tell me if he is there or not.
I need new passport photos. I didn’t realize the ones I had were taken over a year ago! Crikey. I also didn’t realize that just a year ago I could get myself on and off my scooter and out to the mall. On my own. SHIT. I better get liberated soon, this is depressing me. I hope I get some of that back!
Well that was yesterday, and I got new passport photos this afternoon. They are even worse than those last ones, if that is humanly possible! Next step is to get the actual passport. Hopefully by early next week!
I also received the results of my doppler ultrasound, and I’m not happy. I haven’t heard from anyone who went to this clinic and got positive results, so I’m starting to think they don’t know what they are doing. Either that, or my problems are not in my jugulars and are in my azygos veins or something. But this ultrasound is a very specific test that needs to be done a certain way, which is why many technicians go to Italy to be trained by Dr. Zamboni. Which no one at this clinic did, so I fear they are handing out false negatives and putting that in their study, which is only going to make CCSVI look like a hoax. Which it totally isn’t. Out of probably 800 people that have had the venogram prior to treatment (the proper test) I think only 2 or 3 haven’t had any blockages. That would break my heart, but I am 100% sure I have blockages and can t wait to be tested properly and let this clinic know they were wrong.
I am waiting for a call back from an Interventional Radiologist in the U.S. and I’m going nuts! CALL ME! That’s the big difference between health care in the U.S. and Canada. I can’t actually call my doctor and talk to him… I mean, I can try, I can leave messages, but I end up talking to an office manager or an LPN. Only once in my life have I ever talked on the phone to a doctor that performed a surgery on me… and that was because I was hella pissed off at him and the treatment he gave me and I think he knew I was ready to report him to the College of Physicians and Surgeons so he was trying to be all nice. (Didn’t work). Anyway, in the States, you actually HIRE your own doctor by shopping around, where as here we get referrals by our GP and it’s pretty much wherever they can get you in. I called an Interventional Radiologist’s office in New York, talked to the lady that answered the phone about the CCSVI treatment, and she said the doctor would call me back in a day or two (their line up is pretty long now). The IR called me back. The actual doctor that would be performing the procedure! We talked for quite awhile, he was super nice, and he even emailed me within minutes of getting off the phone so I would have his email address and could contact him anytime. My doctor wouldn’t give me his email address if I paid him! (Of course, every doctor is different, I am sure some of my friends have more accessible doctors than I do. It’s just different here. We’re so short of family doctors, you’re lucky if you can find one that will take you on as a patient, never mind “shopping around”). Same with this other doctor I am waiting to hear from. The first time I called her clinic and explained to the receptionist what I wanted, they gave me the doctor’s direct line and when I called she actually answered, and we talked for quite awhile about the procedure and her interest in performing it. Plus she emailed me back later that day. I’m blown away! Accessible surgeons you can actually hire based on your own feelings about them!
I hope she calls me back tomorrow. I want to send her my ultrasound results and ask her if she is willing to test me further/treat me. I’ll be on the first plane. As soon as I get my passport!
Pita still likes hanging out.