Can You Hear Me Now?

The previous post is what blogs are for. No, not to beg for money, but to vent and whine, get it out of your system, and then feel better. I felt a lot better after I wrote that post last night. Sorry you had to witness that, but it was good for me

Today I made a big decision and paid a $1,000 deposit towards Liberation Treatment in COSTA RICA. baby! It’s through a medical tourism company, and I had been on their list for awhile, originally for Poland. Then they changed their minds and put together a package for Costa Rica. At first I was weary of it, but after looking into the package and the doctor heading it up, I thought it sounded pretty amazing. I thought I was pretty far down on their list, however, and didn’t expect to hear. Then my friend Annette said she got booked for June 28, and I knew I wasn’t TOO far behind her. On Saturday I was scrolling through my missed calls and saw “Passport Medical” had called on Wednesday! I screamed! They didn’t leave a message, the buggers! I immediately called them and left a message, not expecting to hear back until Monday, but they called me right back! And offered me a date of July 9!

So I freaked out and thought about it and thought about it. I found out Shawna would not be able to go with me, because it is a 13 day program, and she doesn’t have enough vacation left. So that put a damper on things. Two weeks is a long time to expect someone to leave their job/family for. And then I thought this one might be a bit more expensive than the other places, but it really isn’t. If I went overseas, I’d need to fly first class because there is no way I can sit in an Economy seat for 20 hours. And hotels and car rental in the US would be more, and I’ve been quoted as low as $7,000 to as high as $80,000 so who really knows? And no one else has given me a date yet. And, Costa Rica? Come on! Paradise. And I like the 10 day recovery program they make you stay for:

• Evaluation before and after surgery
• Manual lymphatic drainage
• Kinesiology respiratory techniques
• Specific forms of electrotherapy
• Adapted exercise
• Mobilization techniques
• Relaxation techniques
• Multisensory assessment

No one else does that! It’s procedure, then back to your hotel and go home within a couple days (not that they aren’t giving excellent care, because they are, but still) so THIS sounds fantastic. And I deserve a nice, relaxing getaway, don’t you think? Yes.

So I took a deep breathe, paid the deposit, and quietly freaked out.

I. CAN’T. WAIT.

I still need to confirm a caregiver for the trip, however. I’m sure I will find one, I have a few options coming forward. I hope to confirm and book flights this week! EEEK!

Of course, this life saving opportunity comes at a price (please read this article to see the kind of bullshit we are dealing with) and if you can help at all, you know what to do. Good vibes are also widely accepted.

THANK YOU!!

It’s the end of May and we had a snow fall in Calgary yesterday. It’s gone now, but it is cold and rainy and absolutely ridiculous. It’s JUNE this week, people! Where’s our sunshine and roses?

I’m not all sunshine and roses these days. Nope. I’ve been doing some thinking about my life, brought about by listening to Peter Katz’s incredible new CD. Please watch this video and listen to what the song is about:

So, basically, it’s about a guy who was diagnosed with a terminal illness and instead of panicking about all the things he still wanted to do in his life, he was able to say, hey, I’ve been doing it all along.

And I’m all, you know, a few years ago I could have said that. I was living my life to its fullest, MS, wheelchair, and all. That great weekend with Rob Szabo and the band at the South Country Music Fair. Traveling to Toronto and Montreal after that, to see more live music and visit my friends there. What an awesome life I was living, and if I had died a few weeks after that, I would have died doing what I love and living a full life. Friends, live music, travel, shopping, eating out, lattes, working when I wanted… But NOW? I feel as if my life has been robbed from me. Don’t tell me to “live your life to the fullest” or “live each day as if it’s your last” or whatever the hell. I CAN’T. I have no fucking life. It’s been taken from me and now I get to live out the rest of my days in this fucking chair in front of my TV, unable to leave the house on my own, struggling to get in and out of bed, unable to carry on a social life outside of this room, Facebook and Twitter, unable to LIVE. a LIFE.

So, that’s how I’m feeling these days.

I honestly believe the Liberation Treatment is my ONLY hope to get some semblance of my life back. There have been a lot more Canadians coming back from Poland, Bulgaria, and other treatment locations in recent days and I’m hearing soooooo many great stories it’s making me cry every day. One man in Halifax, who is secondary progressive like me, is able to walk with just a cane again. He said the procedure put him back about 5 or 6 years, mobility wise. I would give my eye teeth for that! FIVE OR SIX YEARS! You know what I was doing 5 or 6 years ago? Living a damn good life, and probably taking a lot of it for granted. What I wouldn’t do to go back there to cane-land…

So, that being said, if you are on Facebook please join my Hope for Liberation group, and remember how in the past I used to do those Pay It Forward projects at Christmas, to raise money for people in need? Well, now I am in need. I think I have lost a lot of readers over the years due to my lack of updates and most likely my overdoses of MS talk and too few cat pictures, but if any of you are still out there, this is the time to let me know. I could use a little pay-it-forward myself to raise money for my Liberation, where ever that ends up being. Flights for me and a caregiver, hotels, car rental if needed, food, the procedure itself… I’m looking at about a $20,000 price tag. Which I will gladly go into debt doing for the chance of getting my life back. But I sure could use some help! If you can spare a few dollars…

THANK YOU!!

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!

i would like to introduce you to my friend Denise. I first found her through this heartbreaking video on You Tube:

But she did not give up. I friended her on Facebook and learned very quickly that this woman is smart and strong and determined. She persevered, wrote a bunch of letters, made many copies of her MRV scans and sent them out to every Interventional Radiologist she could find. She sent copies of research, her “beg for my life” letter as she calls it, proof that venous disease exists before MS and is on the list of diseases that should be ruled out even before an MS diagnosis is made. How about that, huh?

She made this video as a small sample of her stepping and balance, just a few days ago:

I remember those days when I was in that good of shape… *sigh*. Anyway, this isn’t about me. All her research and letter writing paid off. She found a doctor willing to perform the procedure on her! It was done on Friday. And this video was filmed the DAY AFTER:

Can you fucking BELIEVE it!! It makes me cry tears of happiness, but also tears of sadness because we can’t all just go out and get this done. So many doctors are being shut down left, right and center that were doing the procedure in the U.S. In Canada we can’t “go local” and try to find vascular doctors on our own because we need to be referred by our GP. I know my GP would refer me, as I’m getting a venous ultrasound on Tuesday and I know it’s going to show blockages, but the chances of that referral leading to a procedure are slim to none. I can’t hide the fact I have MS and Alberta Health Services has made it clear they will not fix this problem in people with MS. Other conditions, yes. Angioplasties are performed every day in arteries and veins for all types of reasons, but they won’t touch you if you have MS. Fucking neurologists and the MS Society. And anyone who thinks the MS Society is helping with their pittance of $200,000 grants over two years can read one of the many articles (written by doctors, even) touching on that, such as this one or this one and know the MS Society just wants this to go away.

Oh, and THIS is the petition Denise is referring to, if y’all want to sign it!

So that is my CCSVI rant for the day. I’ll just end it by telling you I did cancel my plans to travel for testing because I got into a local clinic here (and hopefully they know what they are doing… they were not trained by Dr. Zamboni so I hope they understand the protocols and don’t miss anything!) but I still have every intention of going to Bulgaria in September. Apparently there is a clinic in Mexico doing it now, so I have an email in to them. They don’t sound experienced so I asked a lot of questions.

This next part is to be skipped if you don’t like open bluntness, don’t have MS or are squeamish. You’ve been warned!

As for my other health issues, the bleeding FINALLYYYYYY stopped after 3 months. I managed to get in to see my doctor right away after my ultrasound results came in, but I still don’t know what’s going on. Next I have to see an OBGYN for a biopsy and hopefully something simple like a UFE (where they kill off the fibroid without a major surgery required). Whatever it is, it is pressing on my bladder so bad I am waiting to hear back from Home Care about putting me on a catheter. I can’t keep up with the bathroom trips and I’m barely drinking anything because of it. I can’t leave the house and I break down in tears everyday because of how much I have to pee and I don’t have the strength/energy for all the trips to the toilet. My bladder doesn’t empty, which is an MS thing, so I have to come back every few minutes and will push on it to try to empty it. It’s terrible. It would also be nice to stay in bed all night and use my EMS machine again! I haven’t been able to because we can’t unhook me fast enough for me to get to the bathroom. I need at least a solid hour of sit-down time to use that thing and I can’t remember the last time I had that! So next time you talk to me I hope to have a bag of pee strapped to my leg. TMI?? Hehe. I have been very stubborn about not wanting to use a catheter, for all sorts of reasons, but I’m over that. I want to be able to relax. I want to be able to eat and drink without fear. I want to be able to leave the house without needing a caregiver at either end to help me get a Depends on and off. And those damn things leak, I don’t care what they say!

Okay, you’re safe. I think.

The next time I see my doctor is May 10, which will be after he receives the results of my venous ultrasound. I will supply him with the same research and information Denise did, showing that venous malformations come before MS and since venous disease wasn’t ruled out before my MS diagnosis, they need to fix it. Wish me luck.

Oh, Denise just posted a new little video!

I finally emptied off my camera’s memory card, and discovered there are no cat pictures on it you haven’t already seen! I haven’t taken pictures of them in ages. Now I need to charge up my battery, which of course died while I was filming parts of Peter Katz’s show, and get on with the cute cat pictures.

Yesterday was my 42nd birthday. I received lots of phone calls, but since I haven’t been in the best of spirits lately (depression appears to be setting in again… phooey) and can’t leave the house anyway, I didn’t even consider making plans with anyone except my family. They all came over (minus my brother’s girlfriend, who is back in Mexico for awhile) and we ate and talked (mostly about CCSVI). My dad picked me up a Dairy Queen Blizzard cake! I can’t remember the last time I had ice cream cake. It was AMAZING. I didn’t ask for any gifts this year… although an iPad, when available here, would be nice. I need work done around here so that’s what I asked for. All money that would go towards gifts needs to go towards Bulgaria instead! Fundraising efforts will go on this summer. The Polyjesters have already promised me a table for fundraising/information at their Mountain View Music Festival this year. And I know they will tell everyone about it and shout it from the stage!

Jason got engaged!! My Jason got engaged!! To his Karina. It’s pretty awesome. I’m so happy for them. It’s not like I ever really, truly believed Jason would marry me someday, or anything.

Peter got married last year, so he’s off the market, too. Sigh.

Me and Peter taken at his show on April 10, 2010

I really wanted to get this entire song recorded, but I knew my battery was dying so I started it later in the song, hoping it would make it all the way to the grande finale, but NO.