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!

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!!

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 ūüėČ

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!

Is everything possible or are there realistic limitations?

I participated in an interesting conversation today about whether or not everything really is possible, or if we would do better to accept our limitations. The original point being made is that while we tend to blame others for our own lack of growth, we tend to be the only thing standing in our way.

However, as a person with disabilities I wonder how realistic it is to say that everything is possible. When I mentioned this the Special Olympics were brought up as a model of how disabilities are not limitations, and how they inspire the non-disabled to push past the limitations they place on themselves. I’ve commented before on the issue of ‘inspiration porn‘ and how offensive that can be.

An example was then given of a recent video somebody had seen about a woman with cerebral palsy who was determined that she would walk. She was working with a personal trainer on her upper body strength to enable her to do so.

My issue with this example is that I’d like to know why she wanted to much to be able to walk. Was it her desire? Her intent? Or was she trying to fulfill the desires of others? The wish to be ‘normal’?

For many wheelchair users, a wheelchair becomes an extension of their body and represents freedom and independence. The only limitations being the physical ones of the built environment and thoughtlessness.

Dr. Stephen Hawking has been quoted as saying “Obviously, because of my disability, I need assistance. But I have always tried to overcome the limitations of my condition and lead as full a life as possible. I have traveled the world, from the Antarctic to zero gravity. (Pause.) Perhaps one day I will go into space.”

For somebody with his finances and reputation I suspect that it is much easier to overcome those limitations than it is for John Doe who also has ALS but lives on disability and is not well-known.

So is it fair to be hopeful that all things are possible or should we accept our limitations?

I’m not sure.

I think that if we truly believe that anything is possible that that’s when we do achieve the impossible. That we do place limitations on our selves that aren’t real or needed.

However, if I lived in the hope that all is possible would I deal with the reality of my today or would I always be living for “if” and “when”?

I think that ultimately I have to accept that today I have limitations. They may not be the same tomorrow or next year. There are things I may be able to do to change those limitations but realistically if I refuse to accept my current limitations I literally place my life at risk.

Somehow I have to find the balance between living with the hope that one day I won’t be as restricted and limited as I am now in what I can do due to allergies and hypersensitivity and also accepting those same limitations today.

Is everything possible? Yes, but maybe not today.

Success at achieving some of my bucket list items!!

In the past couple of weeks I have managed to achieve several items on my bucket list and I’m so excited that I just had to write about it again, without adding new items just yet.

You might remember that my list is currently up to 20 items with some having been italicized to mark them as in progress the last time that I reviewed the list.

  1. At least once a month, taking appropriate precautions, get out and do something social
  2. To be a bridesmaid
  3. To visit New Zealand
  4. To live on the ocean
  5. To own a Class B motor-home (Roadtrek ideally)
  6. Waist length hair
  7. Day-trip to Frankenmuth & Bronners
  8. Reschedule & enjoy my belated 45th birthday vacation
  9. Acceptance of RADS diagnosis and limitations that places on my life
  10. Despite RADS diagnosis, work on improving the quality of my life and work at getting back to work
  11. A year-long road trip following 70 degree (21 C) weather throughout the contiguous United States.
  12. Lose steroid weight and return to a healthy weight
  13. Get out walking, locally and a little further afield on walking trails and then snowshoeing as determined by the weather
  14. Visit Harrison Hot Springs in BC
  15. Go indoor skydiving
  16. Attend the Albuquerque International Balloon Festival
  17. Go on a picnic
  18. At least once a day, do something creative
  19. Resume dress-making
  20. Train Kai in Rally Obedience

Firstly, I’ve kept up with my aim of doing something social once a month, and with the help of the public library, their scent free policy and an extremely helpful librarian and other book club members, I was able to attend a book club meeting! That’s #1 on my list met for this month.

My hair hasn’t reached my waist yet but it is significantly longer than it was – if I straighten it – marking progress towards item #6. I also think that if I was 5′ something, instead of almost 6′ tall, that it would be waist length on almost anybody else!!! Though that would be cheating!!

I’ve pretty much come to terms with my RADS diagnosis though I’m still frustrated by the limitations especially as I have finally made it back to work admittedly in a very restricted fashion. So that’s major progress towards items #9 and 10.

While it wasn’t quite planned, I even managed #17 and had a picnic in my car earlier this week. I’d had a doctor’s appointment at the hospital and only just under two hours later also had a group to attend at the same hospital. Given the extortionate cost of parking I sat in my car for an hour and read my book, having a picnic lunch!

Lastly I got out my sewing machine and whilst I haven’t made a dress yet, I have turned an old T Shirt that I couldn’t bear to throw away into a cushion and I’m part way through a bigger project. #19 can be checked off!

  1. To be a bridesmaid
  2. To visit New Zealand
  3. To live on the ocean
  4. To own a Class B motor-home (Roadtrek ideally)
  5. Day-trip to Frankenmuth & Bronners
  6. Reschedule & enjoy my belated 45th birthday vacation
  7. A year-long road trip following 70 degree (21 C) weather throughout the contiguous United States.
  8. Get out walking, locally and a little further afield on walking trails and then snowshoeing as determined by the weather
  9. Visit Harrison Hot Springs in BC
  10. Go indoor skydiving
  11. Attend the Albuquerque International Balloon Festival
  12. Train Kai in Rally Obedience

If I take out all that have been accomplished or had significant progress made, as you can see, a lot has been accomplished in the last couple of weeks. So much so, that I’ll have to start thinking of some new items for my list as 8 of them have now been marked as either “in progress” or “accomplished”. It’s a great feeling!

How’s your list coming along?