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!

 

 

Just for one day I started to feel like myself again….

Yesterday I felt like myself again, just for a day. It was wonderful. I packed up snacks and emergency survival equipment, loaded up the dogs and hit the road. It was wonderful to feel well enough to just drive….

So Molly, Kai and I went to visit the home of Winnie-the-Pooh, White River, Ontario.

The day was mostly spent driving as it’s a good 4 1/2 hours from Sault Ste. Marie. However, it was a nice sunny day for the most part. Though I drove through two storms on the way home just in time to beat the massive thunderstorm that hit last night.

Some gorgeous views and amazing sights. I saw moose and birds of prey. The lakes were starting to unfreeze so the edges were mixed between waves and open water and icebergs. Some of the waterfalls were just flourishing with the snowmelt.

I loved the sense of humour of whoever was naming some of the lakes. At one point there was ‘Mom Lake’ and ‘Dad Lake’ just next to it. Just as I was wondering what you’d call a third lake I came upon ‘Orphan Lake’ just far enough from Mom and Dad to be orphaned!

It was a lovely day out and the dogs loved the ride and the walk by the Winnie-the-Pooh memorial. Next time we’ll have to go when the museum is actually open and see if I can handle the scents.

However, for right now just getting out for the day was such a huge step for me after almost a year of being mostly housebound. I’m only extending my limits to my vehicle but now that I’m well enough to drive like that again…. it’s wonderful!!

Even with the thunderstorm last night all three of us slept well last night!!

Accept what is…

It’s amazing how quickly we forget just how bad something was and get frustrated with not improving as quickly as we’d like.

A number of people have asked me recently about my progress at respiratory rehab. and with my transitional return to work. Instead of focusing on how much I have improved and the positive aspects of being back at work I have found myself expressing my frustration instead.

How quickly I forget that just a few months ago I couldn’t breathe moment by moment. I couldn’t walk to my own bathroom without getting totally out of breath. I fought for every breath day after day.

Yet, just three weeks into a ten week rehab program I’m frustrated that I still can’t walk on an incline at all. I don’t really account for the fact that I was able to go for a walk outside to begin with which is how I found out that while I’m doing pretty well on the flat, an incline is still too much for me.

I’m actually now able to walk for 20 minutes at a time, on an indoor track slowly, without getting totally out of breath and my recovery time is night and day to when I first started.

Likewise, rather than focusing on what I have achieved in my one day a week, working from home, I found myself thinking of what I hadn’t been able to do.

It’s time for some radical acceptance. For those of you have taken Dialectical Behavioral Therapy (DBT) the concept will be familiar. Radical acceptance is about not judging, accepting what is without necessarily supporting or condoning it and just enjoy the moment for what it is.

So I am accepting the facts that:

  • I can’t do as much as I want to be able to, but I’m doing far more than I could have even imagined not too long ago
  • I have achieved an enormous amount, both in rehab and in work, very quickly
  • It will take time to recover, and I may never make it back to where I was, and that’s OK

I can’t say that accepting what is and letting go of what was is easy. I do know that my life is easier when I do it though.

As for believing in what will be; there I still struggle. Some days I feel pretty hopeless when I’m ‘grounded’ by something as simple as walking past somebody wearing perfume on my way back to my car from rehab. Or when a late night wipes me out for days and days.

Then I have the moments where I do walk for 20 minutes at rehab. and can see a future where I’ll be able to get out and walk again for an hour or more. Those are the moments that I need to hold on to more often. The positive and the hopeful.

To believe in what will be is to accept that what will be is unlikely to be what was and that’s OK. The future is unknown and for somebody who likes control and structure that’s pretty terrifying.

The answer is to really practice mindfulness, and to live in this moment. In this moment I’m doing OK. I’m breathing, I’m able to walk, I’m able to rest, I’m able to work even in a limited fashion. Life is a lot better than it was a few short months ago and it will get better still.

I’m not quite at the point of saying that life is good but it is OK, and there are definitely good moments. That in itself is a huge step forwards and one I need to remind myself of!

 

 

Why labels, and getting the right labels, are important for some disabled people

I’ve always wondered what life would have been like if I had been raised as Deaf rather than mainstreamed with occasional accommodations for my “hearing loss” that were often more an afterthought than an actual accommodation.

More recently, as I’ve struggled so much with my health getting the right label has been of the utmost importance. Without a label at all, everything was a great deal harder. “Breathing difficulties’ sounds so innocuous.

Unfortunately what seems to be the right label, that of Reactive Airways Dysfunction Syndrome (RADS) and Hypersensitivity seem to be very much misunderstood.

However, knowing that that is what’s wrong with me personally has allowed me to push myself in respiratory rehab. much more than I would have done before I knew for sure. Until we’d ruled out a lot of other possibilities I was always scared to do much of anything just in case I made anything worse.

Fighting to breathe for over 6 months before gaining any relief was hard enough. I wasn’t willing to do anything that could make that come back or get any worse. I was already past the point at which I should have been hospitalised months ago. Thankfully, I did get relief with the help of an outstanding speech language pathologist and the continued support of my medical team of specialists and my GP.

However, today I read the best description I’ve ever read on why, as a disabled person, being labelled matters to me.

Sparrows and Penguins

I don’t know if it’s true for all disabled people, but for some of we often do identify by our disability rather than as a person with a disability. I’m not a woman who happens to be deaf. I am a deaf woman. Being deaf permeates every aspect of my life. It is core to my identity.

So like “Candidly Autistic” I’m proud to be a penguin. I might be a different kind of penguin than “Candidly Autistic” but there is relief in no longer trying to be a sparrow.

Such a pretty boy….

So we both survived our time apart, Kai came home looking very handsome. However, he’d caused some concerns while being groomed as he’d peed pretty much constantly not just when I arrived to pick him up.

So today we headed to the vets. The good news is that Kai doesn’t have a bladder infection, nor does he have diabetes. He does have a touch of staining between the pads of his feet and the tip of his penis from licking. Apparently there’s something in a dog’s saliva that can turn white hair red. Nothing serious though as the skin underneath wasn’t inflamed or infected so I just need to watch for excessive licking and most likely his hair will go back to being white in those places in the summer when he doesn’t have ice and salt to lick off.

Sorry Kai – looks like winter boots for you more often next year!

My thanks to the new groomers for their concern. However, unfortunately we think it was a reaction from the bad groom and being at a strange groomers. Hopefully, next time it won’t be so new to him and he’ll relax. However, as he hasn’t continued with the uncontrollable peeing since I picked him up and didn’t pee in the vets office we’re pretty sure it was more like a little kid peeing themselves when they’re scared.

That’s mixed news. I hate the fact that he had a bad groom that caused it. Especially as the groomer used had been grooming him since I got him and had always done a great job before. It must have just been an off day. However, I won’t risk him there again. So I’ll let his coat grow out a little longer this time before his next groom and hopefully all will be OK.

He certainly looks like a handsome boy today, even upside down!

Oh, as for me. I was right, one fall, a few bruises and a couple of mild asthma attacks. The lung rehab. program staff commented on how much more off-balance I was without him and how much more I needed to hold on without him providing counter balance for me. It’s amazing to think how much more restricted my life would be without him. I’m so grateful for his love and presence in my life. Good boy Kai!

On my own today….

Kai is getting a well deserved rest today and going to the doggy spa for a bath, groom and to have his feet and teeth cleaned. He usually loves going. However, at his last groom they must have used dull clippers and he came home some what unevenly cut with razor burn in a number of places. I was not at all happy!

The problem is that Kai likely never reacted to being hurt. Part of his Service Dog training is to stay calm while being trodden on, pinched and pulled at. Much as I watch out for him so that these things shouldn’t happen, sometimes they do and he has to react calmly. So he’s unlikely to have let the groomer know how much he was being hurt.

Today, he goes to a new groomer. Who will have very explicit instructions to use new blades on him and to check him closely so that he doesn’t get hurt again. She’ll also be warned that he loves toothpaste so don’t leave it in his reach if she wants any left!

Lastly while he’s virtually grown out of his excited peeing, his last bastion is to not pee when he sees me after our being apart. So I’ll be warning them to expect the flood, Much as the mess isn’t that much fun to deal with; there is something kind of sweet about somebody being so excited to see you that they can’t control their bodily functions 😉

My vet thinks that this will be the last element of the excited peeing to go but that he still needs to mature some more for us to see it happen. Interestingly, even when his excited peeing was at his worse he has never, ever peed when working except when commanded to do so.

Anyway, so today I have to get by without my other half for part of the day. I have extra anxiety medications to take to help curb the panic attacks at being out without him. He’s my safety backup in so many ways. Even at rehab. I’ll have to remember to stand closer to hand rails and walls as he won’t be there to provide counter balance for me. I’ll need to monitor my own breathing and the staff will be monitoring my Blood Pressure and heart rate more frequently than normal, just to be on the safe side.

Service dogs provide such great independence that sometimes we forget just how much they do for us. Until a day like today comes along and you have to manage without them. Then we are harshly reminded how much harder life is without having them along to mitigate our disabilities. The chances are that I will fall, bruise and have at least one asthma attack while he is away at the groomers. All of which are issues he would have prevented. Likewise I’m sure that I’ll offend somebody talking to me as I won’t have Kai’s cue that they’re speaking to me

It’s going to be a tough day but one that Kai and I will be better for. He’ll be nice and clean and have had a complete break from working for a few hours and I’ll get by. Though even now I’m counting down the hours until I can pick him up again and he hasn’t even been dropped off yet!