Wednesday, August 15, 2012

full moon

It's going on two years since I started counting down the full moons. The things with doctors telling you how much time you have left doesn't actually translate - it's really hard to calculate how long one has - no matter how many times before it's been observed (read studied) etc. And every time I encounter something new about my illness it usually means that some doctor was wrong. I like it when they're wrong -except when they can't admit that some people know their bodies. I'm talking about my Dr. Cardio man here. He knows lots - OK he can't predict, he's a doctor not a judge. he doesn't make the final verdict about my life: only creator or some divine guidance does that. Here I'm talking about ER Dr.s and their assumptions about people, drugs, illnesses.

My family Dr. called me the other day and left a rather concerned voicemail in which she stated that she's read the ER reports and that they've indicated that I'm now in heart failure and that if I need to talk about it I could come in any time. I have to say, first, that my family doctor is a very dedicated lady. I've had her for over a decade now and she simply makes time for me even when she doesn't have time. But sometimes I wonder... only because I've been in heart failure for over two years now! I wonder how on earth the ER doctors missed that when I presented at the ER in Dec. with "I'm in heart failure with TA" (I know longer present the first congenital illness because 95% of the nurses I've come across have no idea what I'm talking about). So heart failure is much easier and it's true. It almost seems like when you know what you have (and you're this young) it needs to be confirmed. G-d forbid a patient is right about what they have.

Anyway, I digress (again) - this is about moon counting. So two years ago I happen to look at the full moon when I got out of the Heart hospital and saw that it was a full moon. When I tried breaking down the time to tangible bits I realized that 2 years is equal to 26 full moons. First things first, Dr.Cardio man never did actually say 2 years, however he did say a couple - we happen to interpret a couple as 2. It was indicated that seeing the age of 40 was not a likelihood. So, when la femme Francaise and I started dating it just so happened that we found ourselves under the autumnal equinox full moon (when Jupiter was most visible in the sky). From then we've been counting our moons. I rather like the adding up of moons than the counting down of moons I was doing over the past while. It makes me sad that I most likely won't get as many moons with her as I did with my love of my life. So, we make sure we are always together during the full moon. We may not have quantity but we're sure to have quality. We're stcuk in a society that values quantity. We give special announcements for marriages that last for 50 years but fail to recognize the quality of the marriage. What about those that last a mere few years - are then any less? Espcially when that person doesn't have another 40 years to live. Even la femme, as healthy as she is, will never be married for 40 years (unless she outlives most of us Candians)! Time is so redundant when it comes to connection. And yes, i realize that I myself made such a big deal about having spent a quarter of my life (or almost all my adult life) with my ex. Yes I get that's a significant about of time that does translate to quality. Because afterall, quality isn't always about the good -we went through some hell together: life loss, health loss, career loss, home transitions (cross-country-cultural) move. Lots of loss, and I am not regreting journeying through them with her -even though she is no where to be seen on the other end of this journey. Sometimes you just don't see another moon with the same eyes.

Sunday, July 15, 2012

Kripalu is not accessible!

My Dr. Cardio man gave me permission to travel in first world countries. What he meant by that is that I can't be exposed to third world conditions, not because I'm better than anyone else but because I need the "comforts" of clean water, air, heat etc. My lungs cannot tolerate intense heat or intense cold. I know this from experience. Had I not had the priviledge of having AC in my car, I would not be able to work. If I didn't have it in my house, I would eventually not be able to breath. no breathing equals not living. Following so far? Good. So here's where Air Conditioning in American, a very rich country, becomes a necessity to certain people with disabilities. (Yes, I recognize this is a First world luxury, but one that has allowed me to live this much longer).
Here's what happens when it's not there:

Once a month for the past 3 months the wife and I have been going somewhere off one of our bucket lists. This is why I haven't posted, I haven't been home enough to do such (although the posts are sitting in my drafts box). I am hoping that I will get to it next month when we've decided not to go anywhere.

This month ma belle Famme and I decided to go to Kripalu, a giant yoga/retreat centre in western Mass. I was looking so forward to it - thinking that I'd eat well, be in an intensive environment of other like-minded people. I had been scouring the catalogue for at least 18 months seeing when would be the best time and when a specific "course" was available. We found one. From all the descriptions of the center I thought I'd be fine. There were first world amenities such as the sauna for detoxifying healing, whirlpool and organic local foods. I called the chef and she stated that there are no-sodium options (as well as vegetarian, gluten free, etc. etc.). Excellent, looking so forward now!

Wouldn't you know when we arrived we encountered indoor temperatures greater than the outside. There was NO air conditioning, not even good ventilation. Seriously! No ventilation. I'm all into reduce-reuse-recycle too. I have my home AC at 24 (75). There's no sense in wasting and my house being an ice-box. But with our humidex in this valley I live in, AC is essential with lung issues. We often have weather-advisories about going outdoor for folks with health issues. So there we were in 34 (93) plus weather with no AC, no ventilation and hundreds of people packed into these group room. FYI the ventilation consisted of floor fans even though the windows were about 12 feet up in the cathedral room. It's the same room that yoga takes place just moments before. Our bed-room was no better. I'm not complaining about the size etc. I've been on retreats before where it's minimal room size/decor. That's fine. In fact the room was very clean. But air... my own O2 compressor kept beeping with "low O2". I couldn't even get enough O2. So we chose to leave. We asked for a refund and was told that the manager was sick and to call in a week. I knew this was not going to turn out well at that point, but I also needed to sleep somewhere that wouldn't put me in the hospital and I was really purple (according to ma belle). My the whites of my eyes were red, the skin around was white. The outdoors was cooler but even if I chose to sleep in our car, I would miss out on our intensive. The group room was easily in the 80s F. and that's where the entire weekend would be minus sleeping in the rooms.

I just don't understand a place that is meant for healing, a place that advertises people coming from everywhere, recovering from everything, including cancer etc. not have adequate ventilation.
I strongly urge you never to go there. If there's a workshop presenter you're interested in, look up their personal web-site. They travel the world, or at least this continent. You will find that workshop elsewhere.

At this point we are out almost 2K (including the alternative place to sleep, until we got home).
Ventilation is not a princess issue- it is a real issue for those with lung issues. It is an accessibility issue (don't even get me started. They advertise as welcoming but besides one elevator, there were stairs to get to the group room. No ramp was in sight. They never, in all their colourful brochures, did they mention there was a ventilation issue and no AC. Wonder if there's heat in the winter!?) I feel swindled. No refund, yet the big new-agey corporation purports healing, wellness, peace and all that shit. Is that healing for the able-bodied? For money?

Kripalu = never again. And I will not take that statement back until I get my money back. I'm not holding my breath; I'm already quite purple!

Monday, June 11, 2012

Elderly and those with respoiratory issues...

...are urged to stay indoors today. If they must be outdoors they are urged to seek shelter or at least stay out of the sun and seek cooler shelter immediately. It ties for the hottest place in the country today with a high of 32 degrees with a humidex of 40. (for you Americans that's 90 with a humidex of 104).

If I had a government job, or other such employment where I could "work from home" I would. Alas I cannot. I couldn't even call in sick today because I'm the only staff on my team - it's summer folks, trainings and vacations compete together. My car does have AC, but it's old which means that the air conditioning doesn't actually cool the interior down, it just stops the cooking taking place. My O2 was on full blast driving home and I tell ya, it was intense inhaling.

"Empire State of mind" by AK and JZ came on the radio and I realized that I hadn't even written about NYC. Not much to write except that it smelt horrible, it was the most walking I'd ever done in my life and very tiring. Yes I had a great time despite the above complaints. I had such a wonderful time with my wife. I took her to the WTC site, we went to the Met, the ESB, Chinatown, Soho, Chelsea, et. Mostly we just walked. It was either that or take a subway and negotiate sometimes 4 flights of stairs. We watched live theatre on Broadway. My most favourite part was when all the theatrest let out and Times Square was full of theatre-goers (as well as the millions of lights). We hailed a rick-shaw (Bicycle taxi) to take us the 10 blocks to our metro station since we were so tired from the walking and especially the stairs. I was wearing heels so walking was going to be minimal that night. I've been to NYC before so I recall the stench in the subway but I never recalled how inaccessible the metro/subway stations were. There's maybe one elevator per dozen stations and of course Murphy would have it that we needed the stations without elevators. Some stations had escalators but would turn them off during off hours with a sign out side that read they are trying to conserve energy. But, there were 6 televisions illuminated trying to sell something or other. Wanna save energy? Get rid of the TVs and make the public transit more accessible. I'm writing both the NJ and NYC transportation authorities. It will probably fall on deaf ears but I'm going to be sure to quote the Americans with Disabilities act anyway.

In 2 days we leave for another trip. First I'm going to a work-related conference for 3 days, then we will take the next 4 days to chill out. My most favourite do-nothing destination: Provincetown. Yes, the anal-planner that I am has nothing planned. No itinerary other than relaxing. It's a small town and the beaches ore divine all the way up and down the Cape. So, relax we shall do. La fame is coming with me despite the conference being work-related. For the three days she will see some museums or galleries I'm sure. From there we will continue our New England drive to the Cape. 

I'm looking so forward to getting away from this heat.

Wednesday, April 25, 2012

putting the disease on the backburner

Yes I've been absent from my writing but that doesn't mean I've all but stopped writing. I have drafts saved up, but no time saved up.
I thought I'd write a quick check in.
Lately for the first time in a very very long time I've had the opportunity to address other, non cardiac related health issues. I am finally seeing a physiotherapist for my scoliosis which has greatly affect my sacrum area and also accounts for the now uneven shoulders. Upon intake my physiotherapist gave me the winced eye look when I answered "all of my life/at least 10 years" to the questions "how long has your shoulder been out of place?" and"how long have you had the lower back trouble?". Fearing judgement I interrupted myself stating that my cardia condition has always been front and centre, and so like a screaming child, it has always received the attention. Now that I'm fairly stable I have the opportunity to address these non-life threatening yet painful issues.

A few weeks ago I was at a meeting with some people that I don't know very well but have "seen around". I had a hard time sitting, rolling my jacket behind my lower back, sitting on my hands at one point, all in the effort of relieving the pressure on my sacrum. A woman came to me after the meeting and said in her slight Irish accent, "you poor dear, look at you suffering". I suppose pain is a bitch on the best of days. I politely said that it wasn't a problem and took it in stride. Then she commended me for not complaining and I thought, so much for practicing humility. What I really wanted to say was that I contend with far more serious health issues and that my back really is "nothing at all".

I guess I just don't have to much to complain about. My TA is being maintained - at a price mind you. I have to stay at a job where I just don't have a voice in order that my $4,000/mth Rx are covered. I've spent a lot less time socializing and having a life because preparing and making healthy meals take so long. I know it's worth it however because the past weekend I went on a binge and ate my wife's chips - the whole bag - and was 'sick' the next day. I know food impacts us greatly but it was amazing just how quickly and how evident it's impact was. Palpitations, racing heart, inertia, depressiveness, aches, edema, excessive cyanosis, etc. all from the MSG in a bag of chips. It was so not worth it and I never want to see another bag of doritos. Horrible.

Monday, April 23, 2012

Reflections on marriage take II - forget the fence

The morning of April 22 I had the luxury of waking up to my besttest play-mate ever. With big smiles on my face, I wished her a happy year and a half (marriage) anniversary. My smiled was whipped from my face as she corrected me stating that it's only been a half year. And so I added that it feels like I've been with her a long time at which point I realized I needed to pull that foot right out of my mouth. La femme, the classy lady that she is, saved me saving face by stating that it feels like we've known each other forever. Yes. Ah yes the truth versus feelings.

I start with that because that silliness is basically what characterizes our relationship. Despite the rate at which we met, hooked up, moved and got married, I am so happy. I'm not sure this kind of child-like giddiness is "normal". The freaky thing about our relationship is that all the big serious stuff happened all so fast (yes, I admit, it was fast), that now I feel like we're 2 big kids just enjoying ourselves. Both of us have been trough some pretty tough times in our lives and had very important long-term relationships that, despite the love, just didn't work. Now, it's like we're "empty nesters". We spent an intense few months being so afraid of my illness that it scared the willies out of her. June 16th is hard to forget but now forgiven. Fear makes us do incredible things. I've done stupid things out of fear - and fear often does a number on me, my anxiety, my heart. All that to say, we spent many months in basic terror fearing that we'll lose each other. Fear that now that we've found each other we'll become one of those tragic love stories: dies so young.

The more I learn about trauma (through work) the more I learn that we were living in a war-zone in our heads. It's been a few years since Afghanistan for her, and me, I have no excuse anymore. So we decided to change things, jump start the fear and fall right into it.

Choosing the tropics/Mexico (rather than "safe" Florida) for our honeymoon was the first step. I mean no disrespect to Mexico here. I do not mean to imply that it's not "safe" for travelling. However according to Dr. cardio-man, it's not heart-failure safe. Or, as I say "is it drive-able?". Being there jump-started my old funk. So did something my acupuncturist said to me, of all people. Without even knowing it, she helped me see that I take everything so literally from Dr. cardio man that I "psyche myself out". That being said, he would prefer that I take everything literally. I know, cardio-nurse has stated to my face "Dr. cardio would prefer that you just stay in town. There are lovely museums here, lots to do. Why do you have to travel?"

Oh darling, I appreciate the concern, however my life is waiting!

Since Mexico, la famme and I have decided to take the money we set aside for much needed fences in our new home and travel. Yes, we will forgo privacy to LIVE.
And so in May I will be taking ma belle to Ground Zero - a destination, along with the pyramids - was part of our very first conversation the night we met. (The topic around the table was "bucket lists" as some there had 14 months to finish their list before their 50th b-day. (La famme asked if seeing the pyramids from 30,000' counts and I said I'd give her that if she gave me seeing the Ground 0 through a peep-hole since it was under construction. You had to be there, it was all about the energy.).

In June I have a work conference, afterwards we will take another 4 days to vacation in Provincetown, a place I've been to before but she's always wanted to go.

In the fall, if I'm still stable we'll board a plane for San Francisco - a place I have never been and have wanted to go since the days when my Jr. high best friend and I always read about. Well, she's been there, now it's my turn.

Next winter vacation we'll starting pulling in a bit and only go as far south as Key West - again a place she's never gone but I'm comfortable.

Yes, I'm hoping for more periods of stable health. And work, I'm hoping to continue work so that I can earn those vacations. So long as I keep at what I'm doing, I don't see how I can't "not build a fence".

And if miracles continue to happen we just won't renovate our 1970s brown-tile-kitchen and go to... Italy, a country ma belle was stationed. That will require 2 solid years of stability for Dr. cardio man to allow that. There's no way home: we can't drive back if I'm not stable for air travel!

Those are my lofty dreams for the next 12 months. Since Mexico I've felt a lot more like my old self: the funk is back, so is the boundary pushing again.

Saturday, March 3, 2012

reflections on Mexico

I feel like I have to qualify this post by stating that I don't think I'm all that, or above science or that know anything beyond my own experiences.
Now that I've said that, I have to say that when I was at Chichen'Itza, one of the New Seven Wonders of the New World, I didn't think it was all that. What I mean by that, is that I know El Castillo is not the tallest pyramid in the Yucatan peninsula. I (partially) climbed the largest pyramid at Coba in the Yucatan so when I reached 2/3 way up Nohoch Mul I might have as well climbed all the way up El Castillo. It's equivalent. Anyway, my feelings about it were wonder: not because it was so amazing, because honestly it was a bit over-rated. Wonder because I, Ms. heart-disease, was standing in front of a real pyramid that made not one but many world lists: Seven Wonders of the new world, Unsesco world heritage site, etc. It was amazing because I was told over and over again to stay close to home/town (as if). So I'm feeling very awesome these days.
Even my brother commented that I look like I'm doing 'better'. I know this illness doesn't get better but it can slow down from getting worse fast. I try my hardest to slow the inevitable down. I go to acupuncture biweekly (it's all I can budget since it's not covered), cook from scratch as much as I can (thereby cutting our sodium & grease), limiting my liquid intake, juicing, etc. etc. It seems to be paying off as there I was, in front of one of the 7 Wonders of the new world. I feel awesome. I don't think I can say it enough, so looking it is the next best thing.
It's awesome because I'm doing things I was thought I could never do - and it's different from "doing the things I was told I could never do". What I mean by that is that I wholeheartedly know my limitations. I know I can't go sky-diving, or even white-water rafting. I also know I can't trek into a jungle to see some ancient pyramids. However, with modern day technology, some money and a piss & vinegar will I could/can. Chichen I'tza represents one of my own limitations - not the cardiologists. (Heck, boarding the plane and going to Mexico is his hard limit). There are a lot of things we take for granted here in Canada or being able-bodied. When I booked Chichen It'za I had to make sure I had an air-conditioned bus, express route. I must sound like quite the princess at times, but it's all needed. Without AC my breathing is affected. Because we were comfortable on the way there, because the site was well excavated, because I chose express route, because I had a nonsmoking rooms, because I had access to low-sodium meals, because I took a daily siesta where I sat in the hotel rooms during the hottest of the mid-day sun, could I take the pyramids off my bucket list.
It's often very taxing travelling with me: before we even leave the country there's so much research and behind-the-scene preparation. We learned that the hard way with our trip to the south-west" non-guaranteed non-smoking room and high elevations wrecked havoc. (I have since found out there are non-smoking hotel chains). I do want to go back to the south-west. I have yet to see the Grand-Canyon. I keep studying the maps trying to figure out a way to get there without making me potentially (seriously) ill. In the months of map-gazing I've come to the conclusion that that wonder of the world, despite how close (in comparison to say the Taj Mahal) may never be experienced by me.
I'm not giving up.
Not yet.
Then again, that's not my style.
Elevation be damned, I will see the Grand Canyon!
But first, I bathe in the awesomeness that was/is El Castillo and the ancient city of Chichen It'za

Friday, March 2, 2012

my honeymoon

I just got back from my honeymoon. Ma belle wanted a beach vacation, I'm not into beaches. I just can't sit still. We joked on day 3 of our trip that I have the mind of an adventure traveller but the body of a beach vacationer. So we compromised, did a lot more of what my doctor ever thought I could do and she even got her full day at the beach. The day we became lobsters I have to add!

My trip began with a preparatory session of acupuncture. I received some 12 hours before take-off. It paid off. It was primarily for anxiety. I find I "syc myself out" way too much that I might as well be having a hard time physically. I mean, I believe in psychoneuroimmunology so why on earth wouldn't a calm mind contribute to a calm flight. It did. I had my best flights, both there and back, ever. Psychologically speaking. In reality, we were late for take-off, the flight attendant didn't help us securing the O2 machine, even when called. I've been questioning my cardio-man's warnings lately (ok, when have I not). This time they're making me really think about the negative impact their comments/warnings have. Just by stating his concern (in the way he does) it sorta plants that potential seed in my mind. Then I start worrying every time I tasted blood, like I did when we first arrived. I also understand the importance of monitoring signs and symptoms but they way cardio-man describes this, it gets in the way of living. In the end, I did not experience any significant amounts of blood in mucus. (This post would have been completely different). It's when I spoke to my acupuncturist that I really realized that these warnings and precautions I've been given are just too much. There's no reason I can't do what I want, so long as it isn't crazy. I know in my heart what's crazy and what isn't. Egypt is crazy, Mexico, not so much.

Because I had been to Mexico before, I knew that the mid-day sun was just too hot for me, so most days I made sure to take my siesta indoors between 12:00 and 1500 hrs/3:00pm. During those hours I would hang out in our room, take a nap, or read, all plugged up to O2. The cool down time allowed me to continue my day in the afternoon heat. Unlike other resort-type folk, we were up early and in bed early. I mean early.

There was one exception. The days we went to Isla Mujeres and Chichen'Itza. At least when we were on the island we had a cover on our little golf-cart. At the ruins, there was NO cover to be found and being hundreds of kilometers inland, there was no ocean breeze to help cool down. That was the worst day of the trip. I suffered heat stroke (not my first time though), and even with my O2 at it's fullest on the POC I had a hard time breathing. It was bearable when standing in front of the pyramid El Castillo. I actually had quite the moment, knowing I was in the middle of one of the sites of one of the New 7 Wonders of the New world: I am still alive to check it off my list. I know that I will never be able to travel to Egypt to see those pyramids, but just 2 weeks short of my 39th birthday I was there to see those. Further along the site I walked down to the sacred cenote (where, according to our tour guide, people were thrown in for offerings). (Our tour guide had quite the story to tell us, some of which through my own research - because I'm a nerd - wasn't all factual. I guess white people are easy to entertain). Anyway, it was the walk down to the cenote that did me in. Any regular person was drenched by the heat of the mid-day sun. I was done for it. I passed out for most of the ride back. It was really only that day that my fragility was apparent (I like to think anyway). I had no feeling in my arms (and feet too) for many hours. That's how little blood was going to my extremities. But, that acupuncture that I received many days back was still working. I didn't freak out. I simply slept on the tours bus, and back at the hotel (once showered) slept it off.

Tuesday, January 17, 2012

well hello there!

Happy new year all!
I've been distant for many reasons.
First, so much was happening in my personal life that I couldn't keep up. I moved from my 3-story house to a bungalow. I got remarried. My spouse had major surgery. Now work is challenging again.

But through all that the thing that probably kept me from writing was a connection to someone else in the US who told me about stem-cell research. Thing is, this contact more like 'sold' stem cell to me. The language used in the emails was very "sales-pitchy" in that used-car-salesman sense. So I did my own research, contacted my cardiologist and the end result is that he just doesn't want to see me waste my money. Yes, it would cost me MY money. That's what happens when health care becomes a business. Either way, he said that the cost of those "treatments" would not necessarily outweigh the long term potential problems. Sure one will feel great for a little while but then crash and burn even fast.

So I stopped writing for a bit. I do appreciate links, information and access to treatments I may not know about but I can't stand snake-charmers. I have a moral value that's very much Canadian (or socially democratic): health-care is a right-to-life and is not supposed to be a business. It's immoral to sell hope.  (Here I am not referring to "right-to-life" in the religious right sense.)

There you have it, my first post of 2012.
Oh, by the way, I had an annual respirologist visit last week (to renue funding for my O2) and my numbers seem to have gotten a little better. Now, the respiratory therapist was new (to me) so had no history of my numbers, but I recall what my room-air sats are and my O2-air sat's are and it seems I've improved. La femme francaise has also noticed a difference this winter: my hands and digits are not as purple (mind you my acupuncturist has been working on some circulation points directly affecting hands/feet). I don't feel as out of breath. My vision has also improved (hence my glasses Rx will be changing again).
Not sure how heart-failure can get better but, this winter (so far, kinahore) seems to be better than last.