Another One Passes Without Change…

Today is International Rare Disease Day, the fifth observance since I was diagnosed in 2009 with Erdheim-Chester Disease.

I’m sad to say not a lot has changed in Canada regarding the availability and funding of treatment of rare illnesses.

Several years later and I still find myself embroiled on a regular basis in arduous applications (along with a fair amount of begging and pleading) for funding. The battles for me are no longer about experimental treatments in hopes of slowing down the progression of this disease, but instead pleas for pain relief, mobility aids and oxygen. Items to make a poor quality of life just a smidgen more tolerable.

Might things have turned out differently if access to treatments and medications had been more readily available? Would I have given up on treatments as I did after the high dose radiation sessions in the fall? I just didn’t (and don’t) have the strength anymore to keep on fighting. Perhaps I’ll be judged as giving up, as weak – but truly, until you’ve walked in these shoes… (and I pray that you never need to).

Click here if you wish to listen to the episode of CBC Radio’s “The Current” in which I was interviewed almost two years ago on the subject of rare illness in Canada. I won’t be listening, I’m afraid to hear the hope that I had in my voice at that time for myself, the fellow ECD patient interviewed (who sadly passed not long after, his family remains in my thoughts and prayers) and other rare illness patients in this country.

The system has exhausted me. Fighting this illness and all the challenges surrounding it has annihilated me. I’ve raised my white flag, and it’s awfully hard to keep waving it.

Getting Nostalgic…

A day of bringing back memories.

A very long chat this afternoon with an old friend whom I’ve not seen in about thirty years. How sweet it was to pick up where we left off so long ago and have it feel comfortable and warm.

It was to have been a visit in person today but unfortunately my body wasn’t cooperating with pain levels that have been difficult to get under control over the last few days. I suspect that my Friday grocery trip has something to do with it, but I’m still saying it was worth it (but if things haven’t calmed down tomorrow I may look a little less favourably upon the tub of ice cream I purchased on that trip – or just finish it off so the reminder has been removed!)

Cancelling was a difficult choice, but as I told my friend – there are days when I can cover up how much pain I’m in and others not so much. And when it’s not so much, I know it makes others uncomfortable to watch and I’d rather not put people who care about me through that discomfort if it can be helped.

I haven’t been able to see many friends in person over the last couple of weeks with the pain management dance I’m doing. Getting me to a point of lesser pain, not be nauseated and still awake takes some intricate timing these days. I’m not yet sure if I’m just not getting the hang of it, or the pain is indeed getting worse as the weeks pass. Today I’m going with the latter, and I’ve needed some pretty intense diversions to occupy my mind.

Tonight I needed interaction with people who exude positive energy, but it’s too late to be calling friends (I know a few of you will be wagging a finger at me to remind me that you’ve offered an ear 24/7, but in reality I just can’t see myself calling at this hour).

Instead I did something that I’ve been putting off because I thought it might make me too sad, but in reality it was just what I needed.

You might know that I used to be a pro photographer. Closing my business and selling all of my equipment has not been without a very heavy heart. But what a wonderful ride it was was to do a job I loved so dearly!

To start, I apologize for the length and for the fact that it can’t be played on mobile devices (I lost the original video and unable to convert  this one) – but I’d like to share what brought lots of smiles to my face tonight.  It’s a collection of portraits that I shot in 2009, compiled in a YouTube video to market my services when I still had services to market.

Like I said, it’s long. But exactly what I needed tonight. If I had a talent for anything, I’d like to believe it was capturing love in my subject’s eyes. I’d also like to think that this talent to see love in others hasn’t disappeared.

Click here for gorgeous smiles!

Take Five Minutes…

“People are just as happy as they make up their minds to be.”

Abraham Lincoln

A few of my friends and family members are going through a heck of a rough stretch lately. Serious illness, financial troubles; for some it seems that each day brings another another unwanted challenge. Yes, I do count myself in all these categories, if you’ve followed this blog you know that it’s been a really rough go for both my me and my daughter. I wish I could tell you that the onslaught has slowed down, but it has not.

The friends and family that I speak of now astound me. Even though we’re discussing some deeply troubling issues, they still have a light hearted lift in their voices, still speak of happy things in their lives, still laugh with me about the silly and mundane.

I had several lengthy conversations this week with others about happiness. The quote noted above from Abraham Lincoln is one that I remind myself of often, and have shared many times. Just more often than usual this week as I note how many of the friends surrounding me at this point in my life seem to subscribe to this philosophy.

Yesterday, a large number of people would have seen a middle aged woman (ouch, it hurt to write that little truth!), bundled up with a grocery basket in her lap as she sat in her wheelchair, oxygen tubes in her nose, oxygen tank fighting with the grocery basket for room. Pushing her was a lovely bundle of energy who always has a genuine and warm graciousness about her.

As others on our journey complained about the cold outside, the bitter wind and how miserable the week had been – what they might have missed was the sheer bliss I was experiencing at that moment. I was out. Icy or not, it was finally fresh air on my face (even though it was just a few minutes out in the parking lot). After months of anticipation, I was finally in the company of more than a couple of humans at once. They may not have been interacting with me (I refer to an earlier post about how one becomes invisible in a wheelchair), but I was out in public at long last. I pray that nobody looked at me with pity, it’s not something I was feeling for myself.

I feel like I share a delicious secret with many of the people who are currently in my life. That true happiness can be found in between all the crap that happens in life. Very few escape challenges and lows in a lifetime. It reminds me of when I’ve had the flu or a cold, experiencing the relief that comes when I can breathe easily again or my appetite has returned. Sometimes you just need to appreciate the moments that are absent of pain or discomfort.

Of course I complain about tough challenges, I’m unlikely to stop. Nor should anyone, in moderation it sure lightens the load when you can share your burdens.

But if you’re not already in the population who can find happiness in the little things, I implore you to set aside five minutes to appreciate the good in your life. The feel of a warm sweater, the taste of a favourite food, the hug from a loved one. And the opportunity to hug the ones you love. I hope you can truly appreciate that last one (I apologize if I’m coming across as sanctimonious, but on this last point I especially believe that I know of what I preach).

You can decide that every day will hold a moment to be singled out and appreciated. You might find that there are more of them to be found that you might have believed.

And now, I’m going to hug the person whom I love most of all. Having her home for the next week brings me more happiness than I could possibly express!

Patience and Timing…

The wheelchair rep left a short while ago, we spent about twenty minutes going over all the options available to ensure that the new chair truly fits. Who knew that it could be customized to the degree that it will be? It’s nothing fancy, but at least it will fit me (provided that my outings aren’t consistently to the handicapped–accessible Lindt chocolate factory outlet, in which case I should have considered ordering a wider chair).

I had checked out the manufacturer’s website over the last few weeks, I was delighted to hear confirmation today that I could indeed order the chair in a colour of my choosing (at least for the metal bars, the rest will be black). If I must have a wheelchair, I may as well have it match my decor! And so it will – my selection will go nicely with the living room furniture nearby to where the chair will be stored when not in use.

As for when I’m out in public, there’s just no hiding the fact that I’m in a wheelchair. I can have a bit of fun making sure my outfit doesn’t clash, but will the combination be attractive enough so that people don’t notice that oxygen hose up my nose? Doubtful, but I can hope…

Now the hard part – the manufacturer is running behind with orders and it’ll likely be at least two to three weeks before it arrives. Too much time to think about where I’d like to go! Not that getting out will be a frequent event, but it will most definitely be something to look forward to.

Timing these days is an issue. To get out, it has to be one of my good days. Those don’t arrive with regularity or the frequency I’d prefer, but once in awhile they do happen.

A few things have to come into play to have a better day. First, I’ll have had to stay off my feet for at least twenty four hours prior. Short bathroom trips aside, the key is to stay in bed with no undue pressure on my bones or heart.

Then comes the timing of my medications. At long last I have access to a pain medication that takes the edge off (most days at least), but it needs careful administering. It’s quite hard on the stomach and organs so it can only be taken for a few days at a time. The days in between? I suspect you don’t want to know what those days look like.

As effective as the new pain med usually is, it doesn’t like to stay down to do its work. Bless my doctor for getting me a supply of an anti-emetic (for nausea) that’s normally used in conjunction with chemo, the stuff is magic.  Gravol can’t hold a candle to it. But….it also puts me to sleep. Not totally unwelcome in the last few weeks, my night-time sleep has gone down to about four hours max – those daytime naps from the meds have been heavenly. Drugged state or not, I’ll take them.

Good thing planning and organizing have always have been my forte. Getting out will take much forethought, but I’ll have plenty of time over the next few weeks to figure things out.

And I’m totally not kidding about the Lindt outlet, it’s second on the list after a trip to Longo’s supermarket. How convenient that they’re in the same mall.

As for when the nice weather comes along in a few months time, I’ll have quite a different list of desired destinations ready to go (unfortunately the wheelchair didn’t come with an option for snow tires!)

Stepping Into the Other Pair of Shoes…

At midnight last night, a text message popped up on my iPad. “Are you awake? There’s a small problem”. I’m always awake at midnight, I quickly replied that I was indeed up.

Although I didn’t recognize the telephone number and no name had appeared, the country code was one that was familiar to me. Not because I’ve ever called it, it’s just one of those curious things I look up when I’m bored.

Code 66 is Thailand where my closest friend and her husband are vacationing, as they do every year for an extended stay. Normally we communicate over Skype, her cell phone or now Facetime, so I’m never left wondering who the caller might be. Except for this time.

A phone call followed a few minutes later, my friend was heading into surgery for an emergency appendectomy and wanted me to know that she wasn’t going to be available for our usual daily call and not to worry.

I was of course concerned for her care and comfort,  having surgery far away from home offers added worries. She assured me that the facilities were perfectly acceptable and that she would be out of hospital within a couple of days. And even likely back to the beach soon after that.

Yet of course I worried. I don’t sleep much at night in the first place and my unoccupied mind had to be there with her in spirit.

I received a text message from her husband this morning that all went very well which certainly eased my mind.  I’m sure she will indeed be back at the beach very soon, she’s a tough cookie having had her fair share of serious health issues to prove it.

She said something  to me last night that many friends have said to me when going through health and personal challenges. “Sandy, it’s nothing compared to what you’re going through, please don’t worry”.

The only thing that made the worry for her any less was knowing that her husband was by her side, as he always is faithfully holding her hand. Even when his work has taken him thousands of miles away, he arranged as no small undertaking to come to her when she faced a serious health crisis several years ago. At that time she too said to me, Sandy – it’s nothing compared to what you’re going through. In fact she waited until the worst was well past before even telling me, knowing herself how difficult long distance worry can be.

This is never a contest between me and my friends about who is suffering more. I want to support my friends in any way I can when things are tough, I try to never diminish their pain or sadness in comparison to my own. Sadly I know that often they don’t share their own trials because they feel they’re not as tough as mine and feel bad about bringing them up.

What this episode did teach me last night was about how utterly helpless it’s possible to feel when someone you care about is facing a difficult challenge far away. My friends tell me how they struggle with these feelings, and I always tell them not to worry, that I’ll be okay. What I didn’t realize until last night was just how much further that worry can be compounded by the thought that they might doing it alone until I let myself imagine my friend by herself in a Thailand hospital.

For those of my friends who know S., I know you send your best wishes for her speedy recovery.

But honestly, this episode was a dose of reality for me on a number of fronts. Despite all the preparations, documentation, schedules of Personal Support Workers, visitors and planning for what happens when the more serious health episodes come along – I’m most often alone when the worst pain comes along. Maybe my friends do indeed have valid reason to worry, I shouldn’t be so quick to dismiss their concerns. But that opens the door to worrying about my own welfare and I don’t want to let myself go there. It’s often easier to dig my head in the sand when it comes to facing my own health challenges. In hindsight, I should have ensured that I had a friend with me for every radiation treatment, every appointment where bad news was anticipated, every difficult procedure. I made the decisions to not accept offers because I didn’t want to be a burden. I’m slowing learning that people who care about me feel better knowing that I’m not on my own, it helps them too.

The discussion comes up quite regularly whether trying to live here on my own is the best option, as each day passes I’m not entirely sure that it is.

An update on yesterday’s post about the wheelchair. A final measuring session happens on Monday, and hopefully the chair arrives fairly soon after that. So far, the front runner on my wish list  for the first outing is a trip to Longo’s (a Toronto area grocery store) to see the produce display. Squeeze a lemon or two, pick out something delicious for a friend to cook up for me. Dreaming big!

Celebrating Victories, However Hollow They May Seem…

Before I launch into some news that came along today, I wanted to share an article that touched me deeply when I read it for the first time yesterday. It comes from a mom and wife facing metastatic breast cancer. It appears that I’m completely unable to get to the last words without shedding tears no matter how many times I read it over.

So much of what is written in this post hits home. A heartbreaking talk between mother and daughter about the illness, and about sharing her struggles  publicly. It’s about fear, courage and love and so much more.

I could say more, but I’m just going to share this link and leave it at that. Family and friends who know more about my personal situation than what I can share here may understand why this post has been so difficult for me to digest.

http://www.huffingtonpost.com/lisa-b-adams/conversation-parents-kids-cancer_b_2622619.html

Now for my news. After a long struggle with social services, my ex’s insurance company and suppliers I received word this morning that I’m finally going to get a wheelchair that fits me, and has the features required to allow me escape from this apartment. Lots of help required, but I’m going to be able to visit the outside world again fairly soon. Wherever shall my first destination be? I’m long overdue for a visit to my Toronto medical team, but that certainly won’t be the first place on my wish list.

A victory? I’m celebrating – and my friends are conducting the online equivalent of a riotous stadium cheer for the hometown team’s trouncing of the opposition – but put in context, how is this a win? What has this situation come to that we’re thrilled to get a piece of equipment which further cements the reality of my declining health? Why months to get to this point?

It seems a hollow victory indeed as I stand back. It’s been a tough lesson in economics, number crunching and bureaucracy. A fair percentage of the daily challenges I face are. It’s often only when a plea for compassion is extended that rules are bent. And they are bent, it’s sometimes the only way things gets accomplished around here.  I detest asking for special favours of others, to be singled out – but I’m learning that it’s how the game is played to get what ought to instead be standard issue. Still lots of shortfalls and more mountains to climb. At least now I have wheels to make the physical part of the attempts somewhat easier.

Love Me, Love My DNR…

I was chatting with a friend from the UK on Skype this afternoon (I love where playing Words With Friends has led me!) when I mentioned that I was working on a new blog post with controversial subject matter (with a smile and a hint of sarcasm he quickly piped in “Sandy, you? Controversial?”)

Most days I don’t have enough energy for rousing conversation or debate anymore, but there is a subject that creeps more and more into daily life out of necessity. I’m going to shove this one heartily into the arena.

Please offer your loved ones an immense gift (despite this being a very difficult task for most) and share what your wishes for care  and final arrangements are should you become seriously ill and/or incapacitated. Most of the people who are aware that I have documented my decisions regarding my care agree that the conversation is an important one to have, yet themselves have not discussed their wishes with the people closest to them. Let me add a request to please get your will sorted out, you’ll save your family what might possibly be no end of distress and confusion (and I have a few lawyers to recommend should you not already have one).

Given my current state, many conversations with nurses and other health care professionals start off asking if my “Do Not Resuscitate” order is still in effect, and easily accessible on my fridge and in my purse. Yes. Yes it is. It can be a tiresome question to answer, but one that I’m glad continues to be asked.

I’m grateful that this subject is discussed with compassion and concern, it confirms that my health care team shares my commitment to what my final wishes are (and I’m free to change the plan if I so desire at any point).  More so however, I’m  grateful that my daughter won’t be faced with difficult decisions should I be incapable of communicating.

There’s a plan incorporating emergency access to my apartment, notifying my family doctor instead of calling 911 (to avoid a circus of emergency responders whose assistance wasn’t required), what measures may be taken if I’m in a bad state – all written and accessible. There’s even a government provided crisis kit in my kitchen with medications that would ease any extraordinary discomfort, some of which I can self administer or have a nurse deliver to me in my final weeks, days or hours. There’s a fair likelihood that I’ll be on my own when these matters need to be addressed, it’s entirely possible that I could be relying on a stranger to open up that manila envelope attached to the side of my fridge.

I’ve become a big fan of podcasts, my desire to keep learning hasn’t diminished. Most of my learning is unrelated to my illness, but occasionally there are presentations of relevance to my situation. And if you’re breathing (which I suspect that most of you are), relevant to you as well.

Allow me to share with you two podcasts that coincidentally came to my attention today.

The first comes from WNYC’s Radiolab “The Bitter End”

https://itunes.apple.com/ca/podcast/shorts-the-bitter-end/id152249110?i=129075366&mt=2

(it leaves to wonder if I should reconsider a tattoo?)

The second from CBC’s White Coat, Black Art “Do Not Resuscitate”

https://itunes.apple.com/ca/podcast/do-not-resuscitate/id270907475?i=126113393&mt=2

As I reread this, I haven’t really even touched upon the controversial part of what I had planned to write. Another day. Today, just a plea to do something very important with, and for your loved ones.