Monday, December 15, 2014

Moving in wild directions

I still don't have my official surgery date. I do have 2 tentative dates: either end of January or first week of February. I'm frustrated that it's taking this long. Two months ago I wanted to put it off as long as I could, to spend time with loved ones and squeeze what's left out of life. Now I want to get this done. If I die, I die. If I don't, I need to get on with healing.

I am quickly approaching my 2 year off work anniversary. I'm having a hard time keeping busy now. December seems to be a challenging month. For three years in a row I was in the ER. Perhaps it's the impact of the temperature change on my lungs. I don't know. Even in 2011 I was in the ER on Ma belle's birthday. Then 2012 is when I went asistole. Even in 2013 after my pulmonary stent I was still back in the ER. I had a CT scan to check that the stent was still in place. It's 2014 and I intend of keeping out of the ER. Perhaps the only hard part about this Dec. will be the waiting.

Hope has kept me going but it too is starting to fizzle. Sort of. I actually have more hope now that I will be healthy (eventually) after surgery. I (cyber)-met a few people who've had the same surgeon I am going to have. He has completed longer surgeries on them (one lasted 14 hours) so I'm feeling better about his competency. I still have fear of course. I'm only human. For those who've witnessed my journey the past 2 years, I want to remind you: I am only human. I receive so many compliments and words of support from folks who think I am "so strong". Thanks. Yes, I know I am, but wouldn't you be if this is what you have to live? Or would you give up?

Some days I do not know where I get the strength. Correction, early on ma belle gave me so much strength. I could not have lived without her. Literally. I am ever so grateful for her love, help and support over the past year and half. Then she burned out, which is totally expected for any super-human being. Now though, living here has become so hard. As I write, she is out with her. Facing each day just playing the waiting game is now a challenge. My private life is mine alone, but my reality is that I didn't know what hard was until now. I'm living in fear, which is opposite of living in faith. I know that and pray for faith (hope) but I also need to recognize that I am a human being going through some crazy shit: my heart will stop beating for hours. Hours. I will not have a heartbeat, as wonky as it has been, for hours! I know people undergo bypass everyday. Not for the stretches I will be under and out and 'dead'. Ten to twelve hour surgery is not a cake walk nor should it be something to look forward to. But it is.

It annoys me how many people don't realize that they "have it so easy". I hear people in meetings complain about how hard the holidays are and not being able to go home. Though I have compassion for them, I wish I had those issues and only those issues. This month I celebrate 7 years in recovery. One of my groups already "celebrated me" as they will be 'closed' over the holidays. Not only was my anniversary recognized, but a few of the women got together and bought me a hospital gift (a throw for my hospital bed). I cried. It was so sweet of them; in their card I found the saying written "you are loved". Perfect since I've been feeling a bit dejected lately. I know I'm not. It's just hard to go through this transition on a normal day, let alone when you're "sick".

Tuesday, December 2, 2014

Just checking in and waiting

Nothing big to report. Tackling my pre-surgical to-do list. Found (winter) storage for my car. Found a really cheap gym (free for Dec.!!) for treadmill use since it's too cold on my lungs outside.
Also finally found some local (and provincial) folks with congenital heart disease. "Met" someone the other day (through social media) who's surgery was 14 hours. Hearing that gave me hope. If fourteen hours doesn't kill someone, then I will get through this too. Or at least, theoretically I can.
Theoretically I get my date next week. Or at least, if I haven't heard by then, I've been given permission to call them by mid-week (next week). I hope they haven't forgotten about me. I had a dream a few weeks ago that they forgot about me and my date wasn't until March. In the end I have no control over all that, just control over my preparatory work. I'll concentrate on that.

Monday, November 10, 2014

Fundraising all done!

I am amazed at the generosity of people sometimes.
After my sister and I did the math, ALL the math (I won't bore you with details) we kinda started panicking, a little. I'd like to say I didn't panic as much cuz frankly, so long as I stay sick, I have my Long-Term Disability to cover my "rent" but my sister will lose a lot. Yes, she's being very generous but with a having just gone back to school (a whole other story for which I'm proud that she's following in my footsteps (decision to return to grad school to eventually become a therapist herself), that decision was made before all of this started. It meant that whatever savings she would have had, had she not gone back to school, could have helped her help me while in Toronto. Reality isn't like that. She has no unlocked savings and I have very little after this past year - though I was proud that two years ago while I was still working I managed to put away lots of my income to renovate the kitchen. That's all gone. Part of it in pre-paid arrangements, part in consultations, part... well, let's just say that being palliative is not cheap. Especially when you're only earning 60% of your income and it's taxed on top of that!
Back to doing "the math". We realized that in order for her to accompany me to TO we had to fundraise. Though she will put up with not earning any pay for up to two months, she does have a job to go back to. So we met with a friend that does this kind of thing for a living and by Friday launched a campaign and an event. In less than one week I am overwhelmed with all the support. As it stands today we have cancelled the silent auction-event. It was that successful. I was hesitant to do this, thinking I pissed off a few folks last year by drawing tight boundaries coming from a place of self-respect: no more drama, no gossip, no more spectacles. I insisted on being treated with respect and not a helpless cripple even though I needed help. I, like any human, deserve respect and there was a point where I felt my needs and serenity were being disrespected and there was just too much freakin drama and gossip around me that I pulled out of it knowing I would probably lose out. Though I miss the loved-ones I am so much more at peace without the constant "she said she said, did you hear that blah blah" bullshit. But you know what, in the end, there are still so many more sane people who are there and don't want to control me, manipulate me or pull me into their drama-fights. These past few days have taught me so much more that about "asking for help" (because I did that last year but it kinda turned into a power-struggle). This time around nobody's trying to take away my autonomy. I am experiencing respect. Pure respect and for that I have so much respect and love for those that are there catching me when I fall.

The year 2014 has taught me about pure-kindness. It's not something I was raised with or modelled (I was bullied as a child for being different). It's something that has grown in my marriage. Kindness feels awesome, not just when you receive it, but when you give it. I have had the opportunity to accompany acquaintances to surgery, hospitals, appointments etc. this year. People I'm not even close to - and I hear the appreciation. I don't do it for the words, I do it because I know how lucky I have been to receive so much help, love, kindness and eventually (when I set boundaries) respect. I hope this part of my life doesn't stop, even when I get well, get busy redeveloping my career and perhaps (hopefully) travelling the world. Everyone needs more kindness and we all need to start by being kinder to everyone, not just people we know.

This week's fundraising has taught met that just because we draw boundaries around unkind behaviour doesn't mean that everyone is unkind in inauthentic. It has also taught me that it is fine to draw those boundaries. There is no reason I should ever have to subject myself to that kind of behaviour ever again. Boundaries don't mean I don't love someone, it means I love me more. I can't expect people to change but I can move away from mean-spiritedness. Goodness knows I don't need any of that going into surgery. I am so overwhelmed by all the support I have received thus far.

Much gratitude, artikat!

Friday, October 31, 2014

Decision

Below is the decision I made, taken right from my FaceBook note. I am running out of time (figuratively and possibly literally). I'm now in fundraising mode, packing mode, etc. All this needs to be completed in a little over 2 months. Yikes!
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I made the decision to have intra-cardiac reparative surgery. What that means is that the pieces I was born without will be created and rewired into my heart/lung connections. I also have a large hole in my heart that will be filled (or partially filled) depending on preoperative pressures (during the surgery itself). The left lung might be disconnected as it's sick. My right lung is really strong (it's the one that received a stent last year in it's mapca).

For the science minded: I have PA with VSD and MAPCAS complicated by PAH in Left lung (Pulmonary Atresia with Ventricular Septal Defect and Major ArtoPulmonary Collateral Arteries; Pulmonary Arterial Hypertension).
Yes, I seriously have all that and have never been repaired!

The surgery is more complicated than a double-lung transplant but the outcome (if successful) is much better. Surgery will last 10-12 hours easy, with bypass being anywhere from 6-8 hours possibly in 2 batches (depending on pressures once patched). 

My surgeon explained that regular/routine surgeries carry risk of 1-5% for anyone. OpenHeart surgeries (bypass, coronary etc.) are upwards 10-15% and this one is 30%. (don't shoot me if these #s are wrong, this is his opinion). There are so few of me that the N value (number of us studied) is low (I checked). However the outcome, if successful, is much better than a heart/lung transplant which would only give me 3-5 years at best. For which, I'm not even a candidate because my plumbing is too weird. Theoretically this could give me much, much more time.

My risk isn't so much in the surgery itself, but in the ICU: for every hour after 6 hours of bypass (death by) complete organ failure rises dramatically. I will expect to be in in ICU for at least a week, several days on ventilator. If longer, they will have to do a tracheotomy (insert tube through neck). I will expect to have dialysis and cross fingers that it clears up after a week. In one of their 10 cases, the patient remained on dialysis the rest of their life. We'll also hope that I don't bleed out, get vent-related pneumonia, have a stoke, or am left with paralysis.

Why am I doing this with all the risks: without it my MAPCA-stent may not last long. I will remain on O2 for whatever few years I have, won't be able to work or travel. I'm bored, I want more. If I don't do it I know myself enough to know I will forever wonder "what if". I can't live like that. I could postpone it but I am at my strongest now which is the answer to the question: why are they offering it if it's this risky: unlike last Nov. when they met and theorized about this, I am much stronger/fitter. I am motivated and they know I will do the work to breath on my own, get off the vent, etc.in ICU (they have another patient in her 20s looking into this right now and told me they are hesitating with her as they don't know if she will do what it takes). I also have no co-morbidity, i.e., aside from this problem, I'm really healthy. I also have a "virgin sternum" which makes cutting and breaking the breast bone so much easier for them.

Why am I being so candid? What do I have to lose? My life is on the line anyway. If nothing else from my journey, I want people to appreciate their health and take care of themselves. You really don't know how important your health is until you lose it. Without it you're not free. Do everything you can to not squander your health. And to appreciate our healthcare system (despite it's brokenness). It may be in bad shape, but if I were in the US I would not be alive today.

What I need from folks: support (if you're in TO), prayers. Even my science-minded docs said they'll do their best and they have theories but in the end, it's a guessing game because it's a mystery. Whatever or whomever that mystery is for you, in January, I, and my team will need it. I kindly ask that I not be told things like "you've come this far, you'll be ok" or other new-agey nonsense (yes, "I" just said that). It diminishes my reality to a saying and it's just not supportive. You're welcome to give it to the universe if you'd like.

may have to fundraise a bit as my sister will have to live in TO for up to 2 months being my support-person. We are looking into caregiver-EI and my own savings but we'll be paying for accommodation there, and we both still have mortgage payments to make here. Never-mind that for each trip I've already been using savings for the last few trip/consults etc.   

Tuesday, October 7, 2014

There and Back

What a long day yesterday was. Up at 4:45 am to catch the 5:55 train to Toronto and returned by 23:30 (11:30pm) the same day. I am too old and too ill for that.
I needed to meet with another cardiac team member who wasn't available when I was there two weeks ago. Then I met with my cardiologist - she actually had time for a last minute chat after my consult. It really was only a few minutes but enough to ascertain where she's at on the gambling journey, though it's not her life on the line.

I am no closer to a decision. In fact all I brought back from TO was a soar throat, runny nose and terrible cough. Lots of travel in confined spaces, subways and hanging out in hospitals will do that. Oh, I did bring back one more thing: love. I was able to have a quick sneaky visit with a dear one and the hug was divine. We're both in our own tough spots right now so it was especially lovely to be able to see that person.

I am out of town again next week, on a silent retreat this time. Originally it was scheduled with another purpose in mind, now I have lots more to think of. A few weeks later I have another retreat. By November I will have been away more in the past 2 months than I have all summer. Sucks a little as I prefer to travel during the summer months though it is often really busy with other travellers and their children

Sunday, September 28, 2014

Taking the time I need...life is serious.

I've been keeping to myself (mainly) the past several days. I have a lot of things to think about. I did have help from one scientist friend. She helped me figure out I have more questions for the surgeon. I am upset that I didn't get enough time to ask all the relevant questions I needed to ask but when I spoke with my sister, she reminded me that there was a heart that came in so it's not like they double booked me on purpose. I didn't realize the surgery he had to attend was a transplant. It makes me feel a bit better - because those things are miraculous in and of themselves and it's that work that I respect so much in Toronto.

So, I have a phone consult with the surgeon booked for next week and I'm also going down by train (just for the day) for another consult. A hundred and twenty dollars round trip same day, albeit a long day (leaving at 05:55 and returning around 23:00hrs) is not a bad price. Considering the hospital rate for the hotel next door is $160 a night, I'll do the train thing.
IF I'm even going to consider this repair, I owe it to myself to know what I'm getting into.

I'm still not sure. There are so many factors beyond risk and death. I do have to think about my "quality of life" now and whether I'm satisfied with my life as is. IE will I be alright dying where I'm at now or is it worth the risk dying sooner for the slight possibility of a longer, better life. I'm not a gambler by nature so this is hard. Actually even if I were a gambler this would still be ridiculously hard.

They did say, if I wasn't as "healthy" as I was in all other aspects of my life (i.e., eating, exercising, organs, etc.) they would NOT offer this surgery period.

Anyway it's a gorgeous day so I'm off for a hike (and yes, that is one of the reasons they are offering it to me: I am active and motivated despite the depression that can come with being this ill).

Wednesday, September 24, 2014

cracked

I met with my surgeons in TO yesterday.
I am cracking. There is nothing left in me to give. I fought my way back to life last year. I fought so hard I'm shattering into a million pieces.
By the end of this year, I will have lost EVERYTHING in my life. In Dec. 2012, I lost the stability that my health was, the career that I loved so much, my income, my home, my spouse, and most likely my life. I've gone from Ms. positive to "I can't anymore". I am done.
I'm not implying that the meeting in TO was grim but it wasn't great either. I really don't know what or how to write about it. There are options but both lead to death. And before anyone chimes in with "yes but all of our paths lead to death",  just stop. I know it, I've counselled on it and now I'm the one facing it. In fact I've been facing it square in the face, refusing to die for some time now. There is only so much a human being has in them.
Even Superman died.
No, I'm not comparing myself to superman but I think I did a pretty good job of averting death the past 21 months.
It can only last for so long.

Sunday, September 21, 2014

Accomplishment

I did it!
I completed my first 5km "race". I walked, not ran. I'm not a runner. In fact, I don't think I'll ever be a runner even if/when I get repaired. My knees are not good. Towards the end of the 2k in May I tried running the last 200 hundred meters or so, just because my time was so slow but since then my knee has been making funny clicking & grinding noises. Ah well, I'm over 40.

So yes, the 5 km today. My time was 1:05:28 (chip) 1:05:35 (gun). I know it's actually not that great (compared to others) but seeing as my goal was to finish it in under 1:15 I'm quite happy. Not only did I do faster than I thought but I wasn't dead last. Not in my age or gender category. Actually there were still a chunk of people behind me. With 15,000 people in this "race" I was never alone. Unlike the May race there I was in the last 100 on the pavement, there were still thousands of people behind me. It actually felt awesome. Unfortunately I wasn't able to have my "transcendence" race all to myself. With that many people you end up talking to many folks, especially in the sick and disabled start. One woman was on high flow oxygen and we chatted for a bout 50 meters. She's waiting for a set of lungs in Toronto. She came (home) to do the race. That was so awesome to see. Another woman I met is now 'retired' from the military and has pain every day. Of course Rick Hanson (Canada's "man in motion") was at the start line in the "Sick/Injured" category ~ the one I was in. I was a few feet from him but I didn't bother getting a picture before hand as I was trying to deal with the thousands of folks there. For the first kilometre I really wanted to quit. I was already in pain and there was too much pomp & circumstance (in the way of thousands of participants and as many people cheering on). By the half way mark I really started appreciating the spectators. I had walked part of the (end) course a few times before so I knew when we were less than 1.5kms from the finish line. I put my power songs and and pushed it. Of course, me belle, along with other soldiers, were there handing out medals. She gave me mine and I puttered out. Sweaty, tired and high. I've never experienced an athletic high before. Now I have.

My whole walk was a metaphor of my journey thus far and to come. Once you push through the fear you can do so much more than you ever thought. It's not easy. No one ever said that, however it is possible. So many people give up and I'm glad I didn't. Though I would have preferred to have a solitary race, I am appreciative of the stranger I met at the beginning that motivated me to keep going. She represents all of the friends, acquaintances, loved ones and general great folk that have motivated me to keep pushing forward. I have to mention though, someone who has motivated me long before we ever met "physically": my nephew. Being my brother's son, he has my eyes (my bother and I have the same eyes/shape/colour/long lashes) so when I look into his eyes some days, it feels like I'm looking back at my inner child. He is the most precious being that has graced my life the past 11 months.

Friday, September 19, 2014

5k goals

Earlier in the year I gave thought to how I would become strong enough to endure open heart surgery or, basically regain my strength from a palliative year. Through Cardiac Rehab I realized that I really enjoyed walking. At least I did earlier in the year since I couldn't really do much of it last year. On a very lucky day ma belle would stick me in a wheelchair with a bigger oxygen cylinder (my requirements at the time) and we'd go around the block. It was such a gift- it meant the world to me. It may have only been a block away around the crescent but I felt like I was out in the world since I rarely got that opportunity .
So, while in rehab I gained strength. At first it came slowly and I was moving faster than the white haired ninety year-olds. It was so hard to accept my limitations. My spirit was so much faster than my body in January. Now here we are nine months later and I'm about to walk 5kms. I know for most people that's an evening's stroll. For me, I "trained" for 6 months. Towards the end of my rehab, my physiotherapist and I designed a program to increase my strength, and motivation to get stronger but stay positive and patient. I used short walks/races as motivation to get me from one marker to the other. I started with the 2k during Canada's biggest race-weekend in May. I think the biggest increase in ability and strength happened between the first few months to 2 kilometres. I really noticed the changes. For one, I would have less and less discomfort carrying my O2 cylinder. Now I barely notice it sometimes. It's more of a nuance than anything but the strength is now there to carry it everywhere.
In June I increased to the 3km with a smaller local "race". Though I did not have an official race during summer months I did increase - though I did slack off, like any good Canadian during our too-short summer months.
So here I am, 2 days away from the Army 5km. This "race" is a big accomplishment for many reasons. First, in my own physical journey from palliative to here. Ma belle reminds me that in those first weeks at the heart hospital I could barely walk down the hall in my CCU. Ironically, it was with the same physiotherapist. So here's my 100 foot journey.
This race is also a tricky one for me. As a pacifist I do not support war or any military things/events. More than 6 years ago a dear friend of mine came to town to run in the race and asked me to come support him. I did but it was hard. At the finish line there were tanks and memorabilia and "support the troops" BS that I had to remind myself "I'm here for him, not this pomp and circumstance". Then a year or two after that I met ma belle. A solider. Ooof. Through her I have learned a lot. I have come to respect who she is though I still do not support war. This race is as much for me and my struggles as it is for her and all the other soldiers: how they've been mistreated, left out to hang when they do their jobs. (Don't even get me started in the mental health aspect of it all. One of the reasons I've kept up with my certifications and registrations is I hope to continue the help that I've been a part of, even in a small way. Though I'd like to do more.)
So, there you have it. I've just explained why I was feklempt when picking up my race kit today. It means so much more than what's on the surface. I've come full circle and I hope this is the beginning of many Army "runs" (walks) for me.
Only time will tell - time, more medical procedures and faith.

See you at the finish line.

the phone call came

Well wouldn't you know, not 24hours after posting for the first time in months did I receive a phone call from Toronto for my meeting. I get to go down, find out exactly what the reconstruction entails, and meet the surgeons. (Yes two, since my case is that complicated). I've already met the aenetheseologist and though our personalities clash, I wouldn't want anyone else to put my to sleep. She has a way with arterial lines that don't bring me to tears. Despite the weird bedside manner I'd trust my life to her. Oh wait, I already have!

I am very nervous. I need information in order to process things but as I'm so rare, there is no info to go on. I have already read and now understand how the bypass machine works. I have an idea about reconstruction when the case of TA is in children but the fact that I'm 41 changes things. My body has had time to adjust and create new complications. More specifically, while in TO last year I learned that I have the jackpot of congenital illnesses. I don't just have Truncus Arteriosus, but also VSD, bilateral shunt, pulmonary hypertension (in my left lung only, thankfully), MAPCA, and all sorts of weird wiring. So when they say reconstruction, sometimes I wonder why they don't just transplant the heart. Actually I do know why: because I would also need new lungs having PH and all. We've already explored that route and though I am a candidate should I choose, the stats on that procedure for me, are not very good. Less so than this surgery. I believe. I will find out in a few weeks.

There is still a chance that I might not choose to go through it. They keep saying "what do you have to lose" but I don't think they realize, my LIFE. A few years with my (gorgeous) nephew is better than  only a few more months (surgery would be scheduled for later this fall). At least I would see him turn  one and hopefully take his first steps. I am thoroughly enjoying all the time I spend with him and though he is not yet walking or standing independently, I love when I take his hands and walk with him, he leaning into my legs looking up at "auntie me". I want to be around to run after him.

Wednesday, August 27, 2014

first of many changes, fall 2014

Wow, I can't believe I've been without proper writing utensils since May. My main computer (with a keyboard) broke and I never got around to replacing it. I just couldn't face windows 8 so I eventually decided to face my learning issues and convert to the dark side. It's nice to be on a keyboard again. A keyboard with real keys (as opposed to the iPad).
Well, that's it for now, just reporting in to say I'm alive. I'm going to learn this new system and write back soon as I am not finished writing about my health. In fact with autumn just around the corner my summer vacation from traveling to Toronto and decision making is coming to a close. I will be going back within the month to face some major decisions. I have more opportunities lying in wait.

Will report back when I have a better sense of iOS.

Monday, May 12, 2014

Change

By the end of 2014 my life will look radically different than it looks now. I don't know what exactly it will look like, I can't predict that, but I do know that everything about my life at this very moment will be different. The changes are neither negative or positive, they just are. Even the so-called "positive" changes will take courage a stretch me beyond what I could ever imagine and that's saying a lot considering I've already been stretched to "post-palliative".
Not many people can claim that.

My life today looks radically different than it did one year ago. How much change could happen? Just wait and see.

Tuesday, March 25, 2014

2nd last week of Cardiac Rehab

It's been a long time since I've written online. January to be precise. I stopped because there were things going on in my life that I did not want a few folks on this planet knowing. I had a great discussion with a friend from afar who keeps in touch with me mainly through my blog. We discussed options including locking the block. I gave that some thought and though I could care less about the few folks I want to keep my information from, I recall the wonderful line that states "the best revenge is a life well lived" (or happiness, or whatever). Now, I'm not suggesting I'm about revenge, because that would mean those 3 still effect me somehow. They don't and since I really don't care, I am writing. Just for today.

And today I'm doing well. Not as well as I'd anticipated. I was really hoping to be coming off supplemental oxygen by now and looking forward to returning to work. I cannot do that, yet. I did however go ahead and complete my jurisprudence course as a step towards becoming a fully registered psychotherapist with the new college coming to this province in a week. I am ready to apply on April first, even if I am not able to return to work. It would have been stupid of me to not do this. If I can never get off supplemental oxygen, at least I covered my bases. Maybe I can turn to phone counselling though that's not ideal in working with Trauma.

Back to my health. I am in my second last week of cardiac rehab and I feel stronger than I did before all of this happened. it is incredible how muscles can grow back in such a short period of time (3 months). I have nice shapes happening under my skin, but lots of growing pains to go along with it. Yes, I have experienced shin splints and the development of Achilles tendinitis! Yes me, little old me. I am at a slow pace. I will never be able to sustain an athletic pace and will always require supplemental oxygen when I exercise or exert myself (walks, "hikes", yoga). I have come to terms with that and it's okay by me. Hell, I was dying last year at this time. To come to terms with having to use oxygen is not such a big deal. Though I still struggle with it regarding work. It's because I miss work, theories, the mental challenge each client brings, etc. I don't miss rush hour, the commute, the pace at which my work was (front-line/crisis work is physically demanding). I missing have to know about mindfulness theories and how it contributes to traumatology for work rather than just my own interests. I miss having to know about transpersonal development for work rather than my own interests. I miss having to know about appropriateness of (art)materials per disorder for work rather than for self-interest. So instead I've been focusing on the development of my body for the past 3 months. My mind can and will follow. Last year was the year of spirit. This year seems to be the year of body (physicality). We are spiritual beings having human experience but without our bodies as vessels we cannot complete the human assignment. Without the body we are nothing in this task.

This Friday I have a follow up with my respirologist who put me on medication that gave me horrible side effects in January. That unfortunately took away an entire class of drugs to treat my PH. We will see if there's anything else that can help. There is one medication that is currently in studies. I am willing to consider it and am glad they are talking to me about it. My last cardio-man (whom I fired after my return from Toronto) never spoke to me about other alternatives. Well, we know what happened there. So Friday we discuss. Then in a few weeks I return to Toronto for my follow up and we will see what can be done to get me off oxygen long enough during the day that I can work again. In the meantime I have a very short window in which I can technically get more ink. I just got off my post-surgical blood thinner and will probably be put back on them or others by the time Toronto comes around. It's one of the things I'm going to discuss, though I dislike the thought of pharmaceuticals, I also really dislike the thought of routine phlebotomies. I am really comfortable with how clear my head has been, my hemoglobin actually being well below 200. So yes of course I have an appointment with the ink-gun booked already in that small window!

I have many other goals in which I am working towards, training for, hoping for. I will post as I accomplish them, and probably no sooner.
Anyway, speaking of physicality, time for my walk!

Tuesday, January 28, 2014

Designer Drug #2 - Fail!

Wouldn't you know it, the 2nd designer drug I was prescribed with was a fail on the highest scales.
I received it a few days after my last post, started taking it and within 30ish hours side effects started. At first they were tolerable so it almost went unnoticed, until the day I couldn't walk. By the third day/third dose I was in so much thigh and lower back pain that I just couldn't walk. I also couldn't sleep on the third and fourth nights due to the excruciating pain. I have experienced major abdominal surgery without narcotics (other pain killers though) so I know what I can tolerate and what I cannot. Those nights were unbearable, especially considering the fact that it was simply drug-side effects.
Anyway all this to say, I am off of them, and will not be going back on them for all the money in the world.

I wonder if there are any other pulmonary hypertension drugs left for me? I really want to go back to work but can't while sporting lovely tubing across my face. The transference that would cause (in my specific field) would get in the way of any therapeutic good that could come of it.

Friday, January 10, 2014

Pulmonary Hypertension follow-up.

Just a quick post today.
I just came back from the lung doctor. He wants to put me on additional medication. From past experience I know PH meds can be quite expensive. The one I'm currently on costs about $4000 a month (give or take $5). I told him my concern wasn't physical side effects but the monetary side effect. He assured me they are cheaper than the one I'm currently on (which I will remain on). I Googled them and wouldn't you know, they are cheaper, by $100. So in a month from now my monthly drug costs will go from about $4100 (other meds I'm on) to $8000. Lovely. Even with 80% coverage on my spouse's plan, 20% of $8000 a month is a lot of money for a one-income family.

I always joked that I had expensive taste.... designer drugs are not the kind of expensive taste I meant.

I really want to get back to work. I'm not sure I will be able to - I am coming to understand just how "pie-in-the-sky" that goal is. Though I won't give up just yet.

Wednesday, January 1, 2014

New year, new life

So here it is 2014. I'm still alive and breathing well. As I work on rehabilitating myself I find myself out in the world at an increasingly exponential rate. I love life and fought so hard to live. There are aspects to life I just don't enjoy and those are things like the rat race, rushing, over scheduling and cranky people. Those are a heck of a lot of folks that one encounters randomly. I was fortunate this past year to surround myself with loving beautiful people. I realize there are many more of these folks in existence, I just have to find them.

In re-entering the living world, I don't so much fear these things as fear that I will lose all that I have gained: an appreciation for the truth in life. Love. Simplicity. Time. Relationships. Quality. Mindfulness. As I took down my mindfulness 2013 calendar called "the Present Moment" I feared losing moments, mindfulness. So me, being me, started looking up articles on simplifying life. A spiritual friend had many of these types of articles on her FB page throughout the year so I decided to start there. As I read through the second of such articles I realized that I don't need someone else to tell me how to simplify my life. I could teach people how to do it. My number one piece of advice would be to stay out of malls (and stay away from store fliers). We spend the bulk of our time shopping/buying things we think we need or that will makes us happy. Having been a shut-in for practically all of 2013 I learned that lesson the slow way. We don't need ninety percent of what we think we need. We only want the new fridge, the new car, the new clothing, the bigger television, etc. We all know too well that things won't buy happiness but we find ourselves wasting precious creative time roaming malls in search of the newest best deals anyway.

This year I changed how I ate, drastically. I always thought that being vegetarian meant I was fairly healthy and compared to the typical American diet, I am. However when I say drastic, I mean it: practically everything was made from scratch, including my own salad dressing. Most of it out of necessity because I can't eat sodium-laden commercial foods. Some of it because I had the time. Since I wasn't roaming malls, I had time to make nutritious, delicious, and because it was from scratch, fairly affordable food. Now, returning to the rat race, I understand not every dish can be prepared that way. Especially if I am well enough to return to work (my eventual goal). I understand why frozen food exists - working families just don't have the time. However, how much time do people spend roaming around malls, their favourite stores and other places of capitalism? Now, couldn't that time be better spent cooking something deliciously nutritious? Why not?

The second part of cooking from scratch was sharing it with loved ones. There's a reason families used to sit down to meals. That's the reason I insisted on keeping the "seats 12" dining table when we were splitting furniture during my divorce. I actually use it.

Being out and about the past few weeks, whether returning home from the Heart hospital or groceries with ma belle, we would stop at shops I haven't been to in over a year. I could understand the draw to spend (waste) time in stores... there's so much to look at and even take home but I don't need any of it. How do I know: I have lived just fine without it thus far. Now, I am not trying to preach non-consumerism here. I did purchase a few things throughout the year. Online shopping is convenient where you're a shut-in. So is having a wife that can go get things. My purchases have been mainly for raw materials (be it ingredients for a food dish, fabric or yarn to make something, dirt and plants to create a space, etc.). I am not against all purchasing but I know for me that was THE leak of time, energy and money in my life. If you need more of those, get out of the stores, malls, fliers, and start spending time with people you love, especially around a table full of home-made food.

For 2014 my goal is to live balance. It seems balance has been my lifetime goal. As a Pisces it has always been a challenge for me. May the year of mindfulness, deep spirituality and deepening quality relationships move forward as I return to the world of mindlessness.