Saturday, July 30, 2011

nurse is an idiot

So I went to my dr.'s appointment to get an answer about my lumps on my neck. When I got there the dr. told me that everything was ok. So why on earth did the nurse say relay the message that dr. just had to see me immediately - that it couldn't wait a week. It was because the dr. was going to be away for a few weeks, yet the nurse did not relay that to me.
So said dr. said she would say something to the nurse who left that panicky message. I too said something on the way out.
That was not cool to worry a patient like that.
Anyway, the lumps... cysts. Benign cysts that perhaps flared when my body was fighting something. I have healthy lymph-nodes. I am happy, relieved and kicking that nurse's ass.

Thursday, July 28, 2011

phone call - what now?

I hate those kind of phone calls from doctors that say they want to see you right away.
My family physician's resident got the ultrasound back and wants to go over it with me. (My family phys. is away for the summer). I returned her message stating that tomorrow is really tight for me: clients & groups. She said that it's my choice but not something that can wait until next week.
That is never a good sign.
I swear if this is something on top of everything I already have (truncus arteriosis, heart failure, pulminary herptension, hypotension, hypoglycemia, endometriosis, scoliosis, shoulder dislocation, ptsd from early chronic health issues) I ... am not sure what I will do with myself.
I was in group this afternoon feeling so weak I wanted to leave. I'm so grateful it's a group I co-facilitate and that the guys really carried it today (awesome when that happens).
Tomorrow it will be revealed. I am trying not to catastrophize but it's awfully difficult when they say it needs to be addressed. I am just hoping to g-d that the resident is freaking out at my weird neck vessels - since she's not used to my condition. Praying that that's it - yes, let that be it.

Monday, July 25, 2011

weeds got the better of me today

Lately I haven't been writing a lot. I've been busy looking for another more suitable place to live, but I've also not been able to articulate the way I've been feeling towards this illness. I suppose two years ago I was adequately able to put feelings to screen mainly because they were fresh. It was easy to capture my dismay, sadness etc. when just out of the heart hospital the doctor says I get a couple of years. Then it was "easier" to write about my initial feelings. Now, not so much, perhaps because I've passed that 2 year mark - and when I did it felt like I was, yet again, proving the medical authorities wrong. Today, more than 2.5 years since that I don't feel like I'm winning. I am increasingly tired. My heart hurts a lot these days. My heart beat is in my throat, both sides are distended, often. I don't bother going for medical 'attention' because, really, what can they do? At this point NOTHING. Absolutely f-all. Every time I go to an ER, they don't even know what I have, I spend 12 hours there before they even say "hm, your potassium is too high, drink this". Then they tell me to see Dr. Cardio man who is already booked for November. I'll see him faster with my previously booked appointment. Canadian health care is great because it's free, but it would be nice to have some doctors around. Many are money hungry so off to the US they go to make mega bucks to buy toys rather than save our lives up here. I'm just really tired of our brain-drain. I'm tired of not getting answers and most of all I am tired or being tired.
I feel like crying every time I encounter another limit. Just this afternoon I sat on the back porch step, waiting for dinner to cook itself and I noticed some weeds by the little cedars I had planted a few years ago. I reached to pull out the 2 closests ones and found that I could barely do it, and once I did, I got dizzy and couldn't breath. Not 3 years ago I was at least able to plant vegetables, weed a little at my own pace at a seated position. Today, 2 weeds got the better of me. What else will get the better of me? How much do I have to loss? We're taking on a new mortgage and I pray that I am able to work another 2 years to contribute but quickly realizing the fingers are actually crossed to last another 2 months. My next cardio appointment (November) feels ages away. I wonder about those other drugs my Dr. Cardio man wants to put me on, wonder if they'll slow down the dying muscle because I do feel it dying. I am amazed at just how little I can do anymore, telling la femme Francaise that she really did get the shit end of the stick: it's not like with my ex who at least got some ability (camping, nature walks, gardening, etc.) out of me; but ma belle really gets nothing but company. I can't even go for an after dinner walk around the block. I hurt, my heart hurts. I want this dying process to slow down even further.

Friday, July 22, 2011

6 weeks of stairs left!

I'm SO tired. This heat has really been challenging my system. Yes, breathing is tiring. But so is the swelling. I can feel the edema in my chest. It sounds weird but I can. Sometimes when I'm not getting enough O2, the whites of my eyes go reddish. My left eye has not only been red the past 30 hours but it's also hurting a bit. Perhaps that's part of the cataracts I have.

In other news, the climb up these stairs will only last 6ish more weeks. I'm moving to a bungalow. I'm glad I started packing a while back - slowly mind you - but I needed to really be ready to leave this house, my first house that my ex wife and I bought together. There's a lot of love in this house, despite many yucky memories too. I also love this house. I will miss my sun-room the most. But, perhaps I'll love my new house even more. It's a weird house, very 70s and oddly shaped (the main floor windows look like basement windows - they are that high). Last year when I was trying to come to terms with giving up this house (dubbed the manor) I must have sounded too stubborn to a certain friend. He replied that it's much easier to find another house to make a home than it is another good partner. Well, he is right. A year later I look forward to making this new house a home with a new life with la femme francaise, a fresh start, with new memories all our own. This house is lovely, but it's laced in memories that her and I don't have, and no matter how many would could try and create here (if I get a stair-chair) it will always be the home that ex-wife and I found to build our life.

I'm looking at a lot of work ahead of me and I'm hoping that the money's there to hire people to 'do' all the stuff that needs to be done because I really can't do any of it. I am weak these days. I spend most of my energy at work - there are stairs there. Today was worse, I was up and down those so many times I actually snuck into the photocopy room to hide for a bit of a break, twice. It was one of those days when someone sees you they want something from you. Hiding was a must.
I just realized it's moved from "feeling weak" to "am weak". I have a hard time carrying my backpack with O2, something that's life-sustaining is so heavy. I wonder if the O2 really helps. I know that it sorta does: it temporarily prohibts me from passing out due very low O2-sats but my required settings have increased. I am no longer on 3lpm. I've moved up to 5 and still feel like I'm not getting enough. Unfortunately the machine only goes to 5 lpm. My face broke out from wearing is so much, I've tried the face-mask but the sticky plastic was no better. We've had to wrap the canula parts in cotton which has helped, but my face is still pretty red and icky. I've been wearing make-up again so that it's not so apparent at work.

Sunday, July 17, 2011

the sea-turtle: my totem animal

I'm exhausted. I've visited 33 houses in the past month or two. I'm hoping to be living in a bungalow, one-storey house, condo or apt. within the next few months. My energy levels are dropping - they usually do in this heat. It's exhausting. It was 34 (93) today with a humidex of 42 (107.6). I'm so grateful I have AC but so tired of the stairs. Another day of going up the stairs and staying up on the 2nd floor. I packed a few more boxes before I needed to lay down. What a life. I'm too tired to do anything (as I'm sure most people these days are since we are all moving super fast).
While I was packing up my office I came across and article on the sea-turtle and the preservation project going on in Malaysia. It was talking about how our great sea turtles are on the endangered species list for many reasons but mostly because of human selfishness. People in mainly the southern hemisphere find these living history books to be tasty delicacies. As a vegetarian that saddens me. As a human who has really come to believe the turtle is her totem animal, that enrages me. These beautifully amazing creatures have been around for millions of years - longer than the dinosaurs. They are walking history. Correction, they are swimming history. The leatherback is one of them: they are the largest turtle and reptile in the world. The article made mention of how (i forget which species) comes to land once in their lives, to lay eggs, and then waddles back to the ocean. Amazing creatures. The babies usually die since they provide food to seagulls, cray fish etc. on the beach on their way to the ocean. But, if they survive, they can live a very very long time. Slow, long living and hard-shelled, these turtles sound a lot like me. I'm stubborn, have lived much longer than anyone, medical or not, would have imagined. I'm also slow, and slowing down further. I'm still full of pride and continue to work, pull my weight. Soon that will have to change since work is getting a bit faster. The pace is picking up and I'm not able to keep up. Either I will go out of self-preservation or they will get rid of me because I can't cut it.
My mother turned 70 yesterday. I never imagined my mother as old. I never imagined I'd be around to see that. I figure she will live another 18-29 years, just like grandmaman. That side of the family has good genes, modern illnesses not withstanding. My father's side, not so much. All the males have died by age 70. Most of them in their 60s. I hope I'm here to see my 40th, and that my mom is here to see me turn 40.
Lastly, the progesterone I"m on is making havoc of my face. It's breaking out exactly where the nasal cannula sits so my face has has permanent red marks for over a month now. It's not only ugly, it's also itchy, uncomfortable and I'm getting so tired of having stuff on my face. It would be nice to sleep free of anything, for just once. I could, but then I wouldn't have enough stamina to go to work. Even my bp was 84/57 last week at the doctor's office. Yikes?!

Monday, July 4, 2011

long weekend

I just got back from an extended long weekend (Friday and Monday off) spent on beautiful Manitoulin Island. I enjoyed my visit with my long-time friend & 'minister' (the woman that officiated my wedding). I was curious to see what took her away from her community in Ottawa. The land. Their land. The family purchased beautiful land at about the same time I started my separation. It is peaceful up there. A beautiful river runs through it.

Anyway, it was a slow weekend. I had the portable POC (Portable Oxygen Concentrator) thankfully. And since we were far away from home, where no one knew me, I was able to wear it without fear of running into clients etc. What I do on time off, or mini-vacations is limited now with my illness. I used to be able to at least walk a kilometer trail to waterfalls etc. Today: no can do. I can only stay by the lookout.

On the drive home I played with my neck and found a lump. I spent some time rubbing it, thinking it was a small ball of tension. Seeing as I just had a massage I find it odd that it's there. Anyhow, even after rubbing it, hours later, it's still there. I'm going to get it checked out. But lumps aren't good. My best friend in high school got lumps all over her neck before she was diagnosed with lung-cancer. I don't think it's that, but I don't need it to be anything. I think heart/lung disease is quite enough.

These hormones are also playing havoc with my system. Week 6 and my weight gain is very uncomfortable ( I don't fit into anything and the tightness doesn't help with the lower back pain). My face also looks like I'm 14 again: all oily and broken out.