Shaking the Foundation…

Sometimes I pray that bad things do indeed come in threes. There are times that challenges come at me so fast and furiously that I hope that the after the third one I get a bit of a break. Sometimes I do, sometimes I don’t.

Or there are times like tonight that two challenges have hit close together and I’m braced for the third. And I pray that the saying about bad things coming in threes falters now and again and I have a better day tomorrow. I need something to go right. It would make a welcome change in the constant onslaught of setbacks. I can’t even begin to tell you how badly I need a challenge to have a positive outcome right now. Not just be mediocre, not just be passable or barely acceptable (which is the current definition of a success around here).

The successes that I have are surrounded in sadness these days. Yay, I found a buyer for my favourite lens! But hey, I just had to sell my favourite lens! Yay, I found a buyer for the dining room table! But hey, I had to sell a custom made table that my daughter and I loved!

I need something to high five over, and someone to be there to high five it with.

Late last night I split a tooth. On something really soft (did you know the foods that people most often break a tooth on are soft bread and muffins?)  I’d already taken off my oxygen for the night (you might remember a previous post about moving about too soon after disconnecting. Not good). I wasn’t able to move as quickly as I would have liked towards a box of tissues to spit out the contents of my mouth that were suddenly of a texture they ought not to have been. My tongue had already figured out what had happened, it felt a sharp jag along one of my molars that threatened to cut if I veered too close.

Normally, not a big deal. Make an appointment with the dentist, get it taken care of.

Not quite so fast…

I won’t bore you with the details but I’ll state that I REALLY need a suitable wheelchair. And the friend who took me to my appointment today would gladly beg along with me. The chair I currently have just isn’t working out. The saga continues with the insurance company, I’ve lost track of just how many months this has gone on. And I’ll add that I’ve been made aware that I’ll never again be able to have dental work other than a cleaning done in a dentist’s office. My cardiac issues do not allow for me to be administered the needle for freezing before work begins, if I need so much as a wee cavity filled I’ll need to have the work done in a hospital. I’m one tough cookie, but even I’m not going to have major dental work done without freezing. Though truth be told, at this stage of my illness I wouldn’t be bothering with dental work unless something significant happens like part of my tooth snapping off.

An exhausting trek (and that’s truly an understatement) resulted in a clean-out of what remained of the tooth and a patch job. A patch job that needs to last… well, just long enough.

As I was waiting out the afternoon  in my apartment before the late day appointment, the fire alarm started alarming. I don’t know if there’s even an appropriate word for the sound of the fire alarm. Screech? Scream? Shrill? Whatever the name of the sound, it was driving the kitten absolutely insane. Jumping up on me (with nails primed)  for comfort, then running around madly. The poor dear, and I wasn’t too thrilled about the sound either.

And it kept going, and going. My PSWs have been asked to check in the lobby for notices about fire alarm tests and other building info since I don’t get down there, but there had been no forewarning. Then the fire trucks arrived. I couldn’t see them (I look out over the back parking lot), but there was no question that they were at the front of the building. The alarms kept ringing. And I heard lots of heavy traipsing (firefighters don’t tread lightly in those heavy boots!) Then I could hear my neighbours vacating their apartments to head to the lobby as we’re supposed to do in such a case.

The alarms kept on going. And the realization became more unsettling by the minute that in case of a true fire (and I still don’t know anything about the circumstances regarding the alarms this afternoon except that my nurse said there was a lot of kerfuffle in the lobby as she passed through shortly after) that I was trapped. On oxygen and unable to walk more than a very short distance and most certainly unable to stand for more than a minute or two at a time, I wasn’t going to be able to follow my neighbours. How could I not have considered this possibility as the severity of my disabilities grew? That if there’s a fire I’m going to need to be carried down the stairs?

A few phone calls to make tomorrow to figure out what happens to the disabled when an emergency situation requiring evacuation takes place, I’m not the first person to be in this position, I’m sure there’s a perfectly sensible solution. I just don’t know what it is yet.

A broken tooth and an emergency in my building have tripped me up. Normally they would have been taken in stride, and I would have done what needed to be done. On the outside I’m as calm as can be about these two incidents, yet inside I feel a gnawing feeling that I haven’t been able to shake.Two more reminders of how isolated I am, and how dependent I’ve had to become on others.

I could really do without a third reminder this week.

Gratitude–Issue # ?

I’ve lost track along the way of how many posts I’ve entitled Gratitude. I hope that in reading my blog you understand just how much of it I feel towards the friends and volunteers who’ve stepped in to ease my journey. It’s the little things, it’s the big things, and all things in between. It’s the things that friends aren’t maybe even aware of doing that can help (tonight it was a hug that was held just a little tighter and longer than usual when saying goodbye).

Tonight was my first night as a recipient of a meal prepared by the volunteer organization Food Train, they’ll be providing me with meals twice a week going forward. Tonight’s dinner was actually more like six meals, lots extra for the freezer! The organizer ensured that all my dietary restrictions were covered off, and asked detailed questions about what I like and what I don’t care so much for. And she also insisted that if a craving for anything struck I was to be sure to let them know. If tonight’s homemade vegetarian gluten free lasagna is any indication, my belly will be very grateful several nights a week!

It’s no secret that I really don’t like living in this apartment. Nothing I seem to do makes being here any easier. I suspect not having left my apartment in many weeks really hasn’t helped matters (do I even remember what outdoor air feels like?) However, I made it a mission this week to appreciate some of the things within these four walls.  Here goes.

Hot water straight out of the tap. In the old house it could take a few minutes for the hot water to travel up to the second floor, and it would most certainly run out before the bath was full. Here, in less than a second beckoned hot water arrives. And it lasts for a good long shower, that’s the one activity that I make sure I save energy for every day. These days I have to use a seat in the tub – I’m grateful to have that too.

Delicious smelling soaps, shower gels, hand and body lotions. They make those showers all the better. Almond, chocolate, orange-vanilla, raspberry creme, coconut and even fortune cookie scent. I’ve been mightily spoiled over the holidays. If they tasted as good as they smell you might catch me licking my forearm when I thought you weren’t looking. I’ll leave that job to the kitten, he’s especially fond of raspberry creme, it’s hard to get him to leave it where I’ve applied it!

The Turtledoves Gluten Free Bakery treats on my counter and in the freezer. I’ve never set foot in their shop, but thoughtful friends keep me stocked with their amazing treats. Friday is Cheese Bread day, and along comes K. today with a loaf having heard how much I love it. Toasted, with Nutella. You’re welcome to grimace, but until you’ve tried it, don’t knock it! And the lemon squares may or may not survive until breakfast…

Bamboo sheets. If you’re going to have to spend most of your time in bed, I highly recommend them. The softest sheets I’ve ever owned. Gratitude too for the PSWs and friends who change the sheets for me often so I can have a fresh bed several times a week.

Almond vanilla linen mist. Again, if you have to spend lots of time in bed, sheets with a favourite scent make it a little more pleasant. I go to sleep with my bedding smelling of marzipan. When I wake up from a nightmare I find it helps to have a scent that I love surrounding me. It’s like a litmus test for the subconscious, certainly it wouldn’t smell so delicious if the bad guys were really there in the room with me?

Photos of my daughter. She’s not thrilled that there’s a photo of her on every wall of the bedroom but I’m afraid this is one battle she’s not going to win. There’s nothing I’d rather look at if I can’t have the live version sitting here with me.

Many of the items listed above are here only because of the generosity of friends. Please don’t mistake this post as a request for more of anything, the apartment is well stocked at the moment (especially with Nutella!) Just an exercise in appreciating the little things in a challenging environment.

What Can Happen in 91 Hours?

In my last post I mentioned that my dearest friend came for a visit from the east coast, she flew out again this morning. Three visits in the last year, but I must admit this trip we got up to the most trouble -  without me ever leaving the apartment!

S. and I have a friendship that spans just shy of twenty five years. During that time we’ve both been through some difficult times, yet we’ve never let the many miles between us get in the way of strengthening our relationship. She’s been my rock (especially throughout the last two years), unwavering in her support, love and encouragement.

The last three trips have had their bittersweet moments. In the spring we met with the funeral planner to make my final arrangements. She helped me pack up my belongings in the house that I had so dearly loved living in and found so hard to leave. In December she came, knowing that my daughter and I were having a very difficult time facing Christmas (which in the end we pretty much ignored, it was just too painful to take on this year).

This trip she ran numerous errands for me with the help of other friends, including getting my sweet kitten neutered yesterday. The poor lad is not all impressed by the cone he has to wear for two weeks; he startles himself each time he passes the mirrored closet in the hall. Last night he had two women cooing and cuddling him, perhaps a fantasy for a few other men out there?

There are tough discussions to be had. She knows every detail of what has to happen, and what I hope to have happen at the end. Often the tears flow when we have these talks; I know I can trust her to be there for me and make decisions that are best for me and my daughter. There is simply no doubt about that, given the way the last two years have played out it’s a blessing that never goes unappreciated.

It can’t be all sombre though, can it? Saturday a few friends and my daughter joined us in my “boudoir” to make it a memorable and enjoyable evening. Great food, amazing company, more than a few laughs. With a sly wink it was suggested that it was the best time some of us have had in bed in a long time.

S. and I were on our own for the last two nights. There just isn’t any other way to put it – sheer goofiness set sail on Monday night! No booze, drugs or other mind altering substances – just two friends between which there are no walls. And no judgement thankfully either!

With permission (if I’m to be honest, it was with insistence!) I’ve including a photo that was snapped, let’s just say that we were on a mission for creative new applications for medical equipment. And no, it’s not a photo of me (I can’t reach my toes anymore to be doing a pedicure, just getting socks on is an adventure most days!)

Complete and utter silliness. Exactly what I needed a good dose of.

 

Seventeen Hours…

“Nothing fixes a thing so intensely in the memory as the wish to forget it.” Michel de Montaigne (1533-1592)

If I’m lucky, I get about four or five hours of sleep a night. To get even that takes a dinger of a sleeping pill to reroute the pain to Never Never Land for a short while. Even then, I’m subjected to some pretty horrendous nightmares, one of the possible side effects of this medication. Even unconscious I’m unable to escape this situation.

Being awake at 4 am has always bothered me, there’s just something especially unsettling about it. To dodge that hour, I stay up every night until at least 1 am, take my sleeping pill and hope that I make it to at least 5 am before waking. Almost always waking up on the edge of a dream that has upset me, almost always a replay of disturbing events that have happened in real life over the last two years. Very seldom does my illness creep into these dreams, for the most part I’m able to walk and do pretty normal things. Just under abnormal circumstances.

These days my level of exhaustion hits new heights. I’m not able to nap due to the pain, so I lay quietly trying to think of pleasant things. More difficult to do as the weeks wear on. Being more or less confined to bed leaves far too much time to think, despite my best efforts to occupy my mind.

For the sake of argument, let’s say I get five hours of sleep. A good night. That leaves nineteen hours. Most days I have a visitor or two (friend, volunteer, nurse, Personal Support Worker), visits might add up to a couple of hours.

This still leaves about seventeen hours a day when I’m on my back (or in some contortion that I feel a bit more comfortable in), alone in my room…time that has to be occupied. I don’t have cable, so I listen to audiobooks and on-line courses, watch DVDs that have been loaned to me, try to find something on Netflix that I’ve not already seen. It’s around this time of the month that I have to slow down the online access as I get too close to my monthly bandwidth limit, leaving me even more time to fill in creative ways. Let’s not forget the insurance issues I wish I didn’t have to deal with on a regular basis, I just don’t have the energy for it. And sometimes all I can do is to push away the attempts at distractions and bear down against the pain.

I had a thought provoking conversation with a spiritual counsellor this week that was of help –the reality is that this really sucks (his words!)

We discussed quality of life. There truly isn’t much left. I’m grateful for the visitors, emails and phone calls. Grateful for the social assistance that’s been made available to me in the form of volunteers, nurses and PSWs.

Being hooked up to oxygen, having to limit time on my legs to about ten minutes a day (preferably less if I can get away with it to lessen the aching at night), not being able to escape these four walls, not being able to prepare proper meals for myself. All more frustrating than I could have ever imagined when I years ago thought about what the later stages of this disease might look like. Who would have thought that I’d blister at the top of  my ears from the oxygen tubing?

For the next few days I’m able to put this aside. My dearest friend is flying in to be with me, to help me with some lingering loose ends. The apartment will be full a good part of the time with other friends, my daughter will be home too (an important note for anyone who’s had the thought, it’s at my insistence that my daughter is away at school. We’re in agreement that it’s the best way - and our way - to go forward at this time). We’ll laugh, we’ll cry. And then laugh again.

But when the next few days have passed, I need to look at rewriting the header to this blog. The words (edited as appropriate a few times)written almost four years ago have become a lie.

Far too much time left over to try to forget things that insist on fixing themselves in my memory. Not a terribly productive use of my time, but it’s the reality that is.

Dying  alone slowly and painfully is something I wish nobody had to go through (and I know how much the people who care about me hate seeing me like this too, God bless them for their prayers for a more peaceful end to this). I have to take it hour by hour, seventeen at a time.

Special Favours…

Many wonderful people do very nice things for me. Some I know better than others, but generally the people helping me out know my situation and go above and beyond to make my days easier.

Most of my interactions these days are over email or over the phone, getting out is getting close to impossible. In the last three weeks I’ve stepped out of my apartment just once (although a challenge to make it happen, I was thrilled to be present for an event that brought a smile to my daughter’s face during her visit home from school).

Although friends and volunteers take care of most of the everyday tasks that I can no longer manage, there are still interactions that require me to pick up the phone – I just have to pick my moments carefully these days and make sure I’m juiced up with oxygen so that I can get out full sentences without a coughing fit.

If I have the choice, the person at the other end of the line need not know I’m ill if it’s not relevant to the conversation. It’s my chance to feel somewhat normal in a life that is quite far removed from what normal used to look like.

Today I played the “sick card” to get a matter attended to more urgently, and it weighs on my mind. Looking at the situation practically, the matter needed a very quick turnaround – and the only way to make it happen was to very briefly explain why I was not able to appear in person to complete a transaction. That I needed to have an exception made for me because I’m ill, that I needed to be treated differently than the average customer.

Although this challenging health and living situation is with me 24/7, it hits home at these moments just how incapacitated I’ve become over the last month. Yesterday and today I’ve learned some particularly tough lessons about my limitations. Trying to do a few tasks on my own because there was no one else to do them, and failing miserably. I can only blame myself for not having had the patience to wait until someone was available to help me, because they always gladly do so.

Things will be changing in a few days after I meet with my case manager. More help is available, and the discussion continues about whether it’s time to move me to a care facility. The hope that I’ll stabilize lessens as each day passes despite my determination. My will appears to have little say in matters these days.

This is truly a miserable situation. Especially if I let my mind go back to discussions that were had when I was first diagnosed about how I hoped things would play out when my health got really bad; and the unconditional support and assurances I received at that time that I would not be going through this alone. It looks less likely as each day passes that I’ll be able to end my days in the comfort of my own bed. This thought saddens me greatly.

This week several people whose opinions matter to me have reminded me that I don’t always have to put on the brave face, that I have every right to have the occasional pity party for myself. Today I had to invite a stranger into that party and I don’t like it one bit.

All Tied Up…

If I thought that my independence was compromised when it was necessary to transition to a wheelchair when leaving my apartment, I was in for a big surprise when something even more limiting was introduced last week – a fifty foot tether.

With my increased difficulty in breathing, my nurse strongly suggested that it was time to start oxygen therapy. I wrangled with the idea over Christmas Day whether I should proceed or not; having signed a “Do Not Resuscitate” order a few months ago I didn’t know if going on oxygen fell contrary to my wishes to forego life supporting measures as my illness progresses.

A chat with a palliative specialist assured me that even in hospice oxygen therapy is used to make patients more comfortable, I would not be acting against my DNR. That chat being only part of a longer meeting at my place during which I finalized all the paperwork for my admittance to hospice for when I, my loved ones or my doctors decide that I’m ready.

Friday afternoon and evening was a whirlwind. Let me say that getting oxygen set up at the onset of a long weekend leading up to New Year’s Eve is no easy feat  - but thanks to the persistence and kindness of my nurse, a few friends and my family doctor (who was on vacation but insisted on doing what she could to help me out immediately), I had oxygen within hours. Plus a few new prescriptions to ease my respiration and to take the edge off of the unrelenting pain.

The oxygen is helping somewhat, I can sit up a bit longer than I’ve been able to in weeks. And conversations are interrupted less by the hacking coughing jags (my daughter’s catch phrase – said with love - since coming home for the holidays has been “Lungs. Keep them on the inside please Mom”).

Over the years I’ve been administered oxygen a few times when laying in a hospital bed, but trying to carry on simple tasks around the apartment with a hose up my nose is no easy task.

I learned a tough lesson the second day that one really must sit still for a bit after removing oxygen to allow the body to readjust. A lesson that I didn’t seem to grasp after the first catapult towards the floor either.

The constant whine of the oxygen concentrator is a rude reminder of my illness. The travel tanks (what kind of trouble can I get into on a three hour outing?) sitting in my living room don’t help (mind you, the loaner wheelchair resting there doesn’t help much either).

Not to mention all the rules that come with oxygen therapy. No candles, no going near a stove in use (a twist that will be interesting to work around given that I have a freezer full of meals that need cooking). A sign on the door stating that on the other side resides a fire hazard. And one cautionary note that surprised me is that I need to check that none of my facial products or lotions contain petroleum (out comes the magnifying glass to check out all the labels). Here I was thinking that the technician told me that they couldn’t be used because they could degrade the plastic tubes – it’s because they could ignite!

The fun doesn’t end there. The government will only supply the equipment for a short time, here goes another round with the insurance company to get coverage beyond that. I’m been warned that given my diagnosis of a such a rare disease that this process could be rather problematic. When hasn’t it been?

This morning I lost it. Ripped off the oxygen and had a good cry. Which I might add is really not a combination conducive to good respiration. In five short days I’ve become so frustrated with nasal prongs that fall out whenever I bend over, tripping over the hose when I tried to get out of bed, the sharp pain up my nose when the kitten yanks the hose in the opposite direction in a spirit of play.

Tired of having to plan out every move in the apartment, or even just in my bed.

The oxgyen went back on after my short-lived cry.

The kicker to all this is that I’m fighting so hard to stay as independent as possible in an apartment that I despise being in. The contradiction can’t help but slap me in the face. If you interpret this post as that I’m feeling sorry for myself today, you’re absolutely right.