Making tough decisions…

So last week I had to make a tough decision. I had intended to drive to Sudbury on Friday morning to attend Northern Constellations. This is a 2 day conference for faculty and staff who work at the Northern Ontario School of Medicine (NOSM).

I have two stipendiary positions with NOSM. The first of which I have held for a number of years now which is as a committee member of the Theme 2 Committee which ensures that professionalism is integrated throughout the NOSM curriculum and education. This committee usually meets in person during the conference whereas we use video conference to facilitate our meetings for the rest of the year.

My second appointment is new this year as the Family Medicine Research Tutor for Sault Ste Marie.

So as NOSM faculty I was really looking forward to the event and meeting my colleagues in person. However, the closer the event came the more my anxiety increased. Finally, after not feeling well for a couple of days I checked my blood pressure and found it to be very high. So I started to consider not going.

Unfortunately I was then booked to stay in a different hotel to the one that the conference was in. So this meant that I’d have two hotels to manage my allergies in. Two lots of open areas and two bars and restaurants. That was the final straw. With much regret I cancelled my attendance in person and set up to join the Theme 2 meeting by video conference instead.

Within a couple of days my blood pressure dropped back down to normal and the general sense of illness went away. So I knew it was the right decision.

However, it was a really tough decision to make. Not so much missing the specific event but rather having to accept the restriction on my life. However, given that my citrus allergy appears to still be extremely sensitive it was the safe decision.

Will I ever be able to stay in a hotel again? Maybe. But I need to break it down into smaller pieces rather than trying to attempt a full conference. Perhaps a night in a local hotel using room service rather than eating in the restaurant and checking that they don’t provide a breakfast buffet, with fresh oranges, in their lobby area.

It might be possible. Maybe by next year’s conference, which will be in Thunder Bay, I’ll feel that the risk is out weighed by the benefits. Though having to fly up there adds another environment to manage.

Some days are tougher than others. Some decisions are extremely tough to make but all I can do is the best that I can and look out for my own safety. It would be a lot easier if all my health issues would just get in line rather than my having to work them all out together!

What’s a few more bruises?

Today was a special day. It was the first day that I could shower after my surgery and let the water help take the dressing off. It felt good!!

However, without the dressing my bruises are somewhat vivid which added to those from the IV line on my wrist leave me rather a multitude of colours.

Bruises have always fascinated me. Probably as I usually have a few that I’m not quite sure how I acquired them and I find it interesting to see them change colour and fade with time.

My current bruises are deep and will last a while. They’re at the black and purple stage with a hint of yellow just starting to appear in places.

These bruises will fade with time, leaving just the surgical scar to remember the surgery by. A scar I will wear with honour and thanks to all the professionals concerned.

One more rabbit hole dealt with…..

On the Easter weekend I took the decision not to blog for a few weeks. My health had gone down another rabbit hole and I was finding it overwhelming to deal with. Now that I’m through the worse of the rabbit hole it’s time to start blogging again.

Yesterday I had surgery. The thought of this surgery terrified me. I am allergic to general anesthesia and have come very close to death several times in the past thanks to it. However, I have to give a huge shout out to my surgical team. My surgeon and anesthetist took my concerns seriously and agreed to operate using just local anesthesia and sedation. As long as I could tolerate it. If I couldn’t then they’d have to put me under but would use different drugs than usual in an effort to stop the adverse reactions I’ve had in the past.

Apparently, I’m a superstar! I not only tolerated it but I tolerated it under such mild sedation I was allowed to go home the same day, rather than stay overnight as we’d been expecting that I’d need to do.

Today, I’m sore and morphine is my friend. However, aside from the surgical site itself I feel pretty good.

I now have to wait three weeks for the pathology results of the mass that was removed. All along the belief has been that it’s probably benign, and in fact when biopsied last year it was found to be benign then. However, since then the mass grew and changed in ways that made it imperative that it was removed.

If it’s not benign and I need to deal with radiation therapy or chemotherapy then I’m ready for it. Nothing is as scary as the thought of the surgery itself. Now that I’ve survived that I can deal with anything.

It was a very strange few weeks recently as part of me was completely convinced that I wasn’t going to survive the surgery; that I’d have an allergic reaction and die. It was an odd position to be in.

Yet once I arrived for the surgery itself and it became clear how much work the day surgery team had done to be ready for me; setting up a completely latex free operating theater just for me; making sure everybody knew at every handover that I have multiple allergies, was absent my service dog, and that I’m deaf; I felt more optimistic.

So this is a HUGE shout out to the day surgery team at my local hospital. They made a terrifying experience as positive as it could possibly be and made me feel validated and understood throughout.

Now I just have to take it easy for a while and let everything heal. One more scar for my collection!

Sometimes being stubborn is what’s needed…

Sometimes it’s hard not to think that life is out to get me. On Monday, I posted about finally feeling like myself again having had a day out in the form of a road trip on Sunday.

On Monday I had some follow-up tests due to one of those rabbit holes we dropped down when trying to find the cause of my breathing issues, just as a precaution, and the results came in yesterday and they’re not good. So I’m back to that specialist next week.  First appointment after the holiday weekend.

It just seems that for the last year, or two, that every time I start to feel as so I’m getting a handle on life again that something else comes to try to knock me flat.

Well this weeble may have been slow in recovering her equilibrium over the past two years and it might be taking me longer to get back up; but I’m getting back up and will deal with this issue as it comes. I’ll also work hard at not worrying about the unknown and the suspected in the interim.

In reality nothing has changed since Sunday. I had the same issue then, I just didn’t know it. So I’m going to hold on to the good feeling from Sunday and use that to help me through the next few weeks.

I’m on the path to health and while it seems to be an especially twisty path I will get there!

I’m too stubborn not to!



When you don’t know what to say, say that; don’t just say nothing!

One of the things that I’ve noticed over the last year is that people seem to have a real problem with not knowing what to say when somebody is in an extreme situation. Rather than say the wrong thing, they say nothing at all.

I assume that it’s a variation on the old adage that if you have nothing nice to say, don’t say anything at all. However, as the recipient of a lot of silence over the past year, from people I’d previously thought of as friends I’d have to say that it hurts.

As I start to re-enter the world a little, even heavily mediated by technology, I’m finding that many people just didn’t know what to say when they heard about my precarious health. So while they were thinking about me, and concerned; willing to help where possible, they still just said nothing.

So from my perspective, they didn’t care. They weren’t interested in me or what was happening to me. Their own life and situation was much more important than taking a few seconds to drop me an email now and then. It hurt.

So for what it’s worth – if you know somebody in a difficult situation and you don’t know what to say to somebody in response, may I suggest that you say just that.

Let them know that you are thinking of them. That you care.

By being silent you’re making a statement. It feels as so you don’t care enough to make an effort to say anything, even the wrong thing.

When people are in extreme situations; especially one like mine which is extremely isolating please take the time to just say hello now and then. It takes next to no time for you to do but means the world to those fighting such health battles.

There is one caveat to this recommendation of course. If you’ve been asked to not contact the person, that’s a different issue. In that case I strongly suggest that you do do as asked. People don’t ask for no contact with others lightly. Disrespecting such a request is incredibly arrogant and narcissistic.

I believe that people know what they can handle and what they can’t. Unless you’ve been asked not to contact somebody in a difficult situation… take a moment, let them know that you care.

I feel as so I’ve run a marathon… and for me I have!

So today was my first day of lung rehabilitation. A great deal of work went into making it as safe as possible for me to attend this rehabilitation program. I am very thankful for all involved who not only helped assuage my fears, by doing so, but also validated me at the same time.

So today’s post will be short as I feel as so I’m recovering from running a marathon!

In reality I did nothing more than stretching exercises to warm up and cool down, and two five-minute very slow walks around an indoor track spaced out by a good five minutes rest in between. This all took me an hour! Now I was being monitored before, during and after to check on my heart and lungs. So that took a little time. However, it was hard to think that a year ago I was walking around the track in the local hockey arena for an hour at a time, without stopping and with chatting with a friend at the same time.

However, the good news is that my heart and lungs are recovering OK. I had a few issues with the seasonal allergies (very sore itchy eyes) that I’m currently suffering from on top of my ‘normal’ allergic reactions and one spot on the track where I had just the starts of a cough which is the beginning of an asthmatic response for me. We think there was either a little more airborne latex just there, in the forms of big posters, or a recent clean-up might have taken place. Regardless if I kept as much distance from the ‘spot’ as possible I could get past the area without getting worse.

So it’s all down to reconditioning my body again now.

I’m not likely to be able to run a marathon at the end of the 10 week program but I should be able to walk for much of the 90 minute session without getting out of breath every few minutes (allergies excepted). That in turn will improve my stamina, and general well-being. If I can lose a few pounds of steroid ‘belly’ too that would be fantastic! However, given that I was as hungry as a horse when I got home…. I’m not counting on that one!

Kai (my service dog) was exhausted too. While I’ve kept him physically fit on his doggy treadmill while I’ve been ill and he plays will Molly in the yard frequently it’s not the same as actually walking and, of course, he was working too. The poor dog was so tired that when we got in the car to come home, he climbed over into the back seat and curled up instead of sitting up on the front seat to be harnessed in. I decided that if he was that tired I’d just have to rely on my eyes to work out where sirens where coming from if needed, and as I was only a few minutes from home anyway, I just harnessed him in to rest. Poor dog! Apparently exercising with me is hard work!! Just think how fit we’ll both be in 10 weeks time – relatively!!

When is disability accommodation not accommodation?

In Ontario under Human Rights legislation, and the Accessibility for Ontarians with Disabilities Act (AODA), I can’t be discriminated against due to my disabilities. However, there is this wonderful phrase ‘undue hardship’ that comes into play when requesting disability accommodation.

Recently an Ontario school board declared that it would be an ‘undue hardship’ to accommodate a child’s service dog, in the child’s classroom, that is trained to help the child with their autism. Many people disagree and the case continues.

However, the issue of ‘undue hardship’ is very complex as this case example demonstrates well. The key message in this example that in an employer/employee situation you must engage in the process and the solution may not be perfect, and doesn’t have to be.

I’m currently engaged in this process with my employer and will give them all credit. They have come up with a transition plan that works. It takes into account my limitations (that I can’t be around scents, citrus or latex at all and currently have limited stamina) while also giving everybody time to try to work out a longer term solution to the issues concerned.

In my case my deafness is complicating issues. In most cases, if somebody had to work from home they could teleconference in to meetings and participate in that way. Unfortunately even with my highly amplified phones I still need additional cues – faces. So we’re looking at ways of setting up video conferencing through Skype, or similar, that will be easy to use and low to no cost.

My employer is working hard at accommodating me but the issue of undue hardship is still real. The problem is that it’s poorly defined. Realistically it’s pretty easy to state that expecting an entire university, that also houses a gym with public membership, to go citrus, latex and scent free would be an undue hardship.

Yet some schools do go entirely peanut free to accommodate children with anaphylaxis.

So where is the line drawn?

Is it because my primary allergen (citrus) is so unique and also so prevalent in everything that makes it just unrealistic to accommodate? I’ll admit, I didn’t expect my employer to even try accommodating my anaphylaxis in terms of making the campus safe, having recently seen how hard it was for a hospital to do so.

The next issue is the practicality of accommodation. It’s one thing to say that we can use Skype or similar to video-conference meetings so that I can attend and participate, but doing so is another issue.

I happen to know that this works for me as I use a similar product, WebEx with my colleagues at the Northern Ontario School of Medicine (NOSM) frequently. However, NOSM is a distributed program. They video-conference classes and meetings on a daily basis. It is their way of doing business. So my needing to see faces isn’t an issue; they’re provided for me for the most part anyway. Sometimes I have difficulties with people just teleconferencing in and then it depends on the chair of the meeting. In many cases, they’re excellent and repeat what’s been said for everybody to hear anyway so I can follow the repeat.

So setting aside my employer for a moment, who are doing an incredible job of working with me, my problem comes when I ask for accommodation in other contexts. Not only do I have to explain my disabilities in at least general detail (which I shouldn’t have to), and ask for what I need but often they then expect me to resolve the issue myself.

Let’s be clear – if I could resolve the issue myself I would have already done so. When I found myself unable to talk for those NOSM meetings I contacted a colleague and we texted during the meeting and they voiced my thoughts for me as needed. It was very helpful when they needed a committee vote for example; rather than my having to give apologies.

I think it all comes down to the way that people respond. I’m learning to ask for accommodation, and in fact to even demand it when necessary such as that the majority of my health care providers are now using email to schedule appointments with me rather than insisting on using the telephone. A win!

What’s hard to deal with though is when the request for accommodation isn’t really a hardship; in fact the accommodation takes minimal effort for the person who needs to provide it but they act as so it’s an unbearable amount of extra work.

Those people make my life hard. It’s hard not to feel like a burden when that’s the reaction. It’s hard not to want to just give up and stop fighting. I’m already fighting my own body each and every day. Please don’t make me have to fight you too just to get you to treat me with a little compassion.

So when is disability accommodation not accommodation? When it’s done without compassion and professionalism.

I don’t want or need your pity.

I do need you to listen to me and to work with me. I have solutions, I know what works for me best and what would have least impact on you, or others.

Disability accommodation is not about placing undue hardship on the able, it’s about providing equity and liberation for those already fighting wars you have no idea even exist.

Please remember to be compassionate whenever anybody requests  an accommodation. You have no idea how hard that was for most of us to even ask for!