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!

 

 

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!

Online dating is an adventure in imagination!

A few weeks ago I mentioned that I was going to try out online dating. Well, here we are a few weeks later and I have to say that as long as you view it as entertainment it’s a fun waste of time.

I can’t believe how much people lie. I feel like House is actually right – “Everybody lies”

They lie about the most stupid things. Interestingly men and women seem to describe themselves very differently. Pictures of men who self-describe as ‘athletic’ and ‘average’ are self-described as ‘a few extra pounds’ by women with the same build.

An interesting research study could certainly be designed to look at why that might be.

Secondly men lie about their height. As a 6′ woman I’m well aware that many men are intimidated somehow by tall women so I pay attention to their height. What I don’t understand is how somebody thinks that they can describe themselves as 6’2″ when they’re barely 5’10”. Do they only date women who are 5′, who may not be able to tell the difference? Crazily enough they’ll often post pictures of themselves with backgrounds that make it quite clear that they’re nowhere near the height they mention. Of course, even if they manage to post a picture that doesn’t give it away meeting for the ubiquitous coffee soon gives the game away.

If you’re going to lie about your height what else are you lying about?

Marital status is an obvious one and most men give themselves away pretty quickly. I don’t understand why they don’t just join the sites that are designed specifically for people who want to cheat. Are they just lying to themselves?

Then there are the ones that hate judgment as they pass judgment on complete strangers, or who are grammar Nazi’s and can’t spell grammar correctly to begin with!

Also, since when did it become acceptable for the opening line in a conversation to be about whether or not you give blow jobs? Again, there are sites that are totally about sexual hook-ups, can’t you use those instead?

So for those of us that just want to find friends, and date a little, please let’s talk about the weather, the day, our work, our interests, places we’ve traveled to or would like to travel too.

I guess at the end of the day, it’s a cheap form of entertainment. I just came across a site that say’s that it’s different and really supports friends and dating rather than cheating and sex hook-ups. I’ll try it and report back in a few weeks.

In the meantime, the thing perhaps to keep in mind is that I’ll only use the free sites (having paid for the expensive ones in the past and found them no better) and the old adage seems to be true:

You get what you pay for!

 

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.

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.