Tag: lifestyle

Labeled Disabled

by N.A.Z., posted in Disability

We’re Seen as Nothing

People with disabilities are too often rendered invisible—not seen, not heard, and certainly not believed.

Our existence is questioned, our voices dismissed, and our needs ignored. We’re treated like our struggles are exaggerated, our pain is inconvenient, and, honestly, our presence is just a burden. Do we not deserve dignity? Do we not deserve to be respected and included? Do we not bleed?

Let’s talk about how healthcare providers treat people on disability. Specifically, those on social assistance disability versus those on insurance-backed disability from their workplace. Spoiler: it’s not the same. If you’re on social assistance disability, you’re the bargain-bin patient nobody wants.

Here’s the deal: providers often have the option to not take social assistance disability clients. Why? Because they don’t get paid the full amount for the services they provide. Take dentists, for example—they only get about 30% of what they’d normally charge. I mean, if you’re a successful business owner, why settle for 30% when you can get 100% from someone else? And so, we’re left scrambling to find care, while others get gold-star treatment.

Chiropractic care? Forget it—it’s not covered. Doesn’t matter that it could help manage and prevent a variety of conditions. Psychotherapy? Nope. But, don’t worry, they’ll happily pay for your taxi to and from a session they refuse to cover. Make it make sense.

I’ve even been told flat-out, “No, we don’t cover therapies.” Oh, cool, so you’ll pay for me to physically get there, but the actual help I need? Not your problem. It’s like dangling a carrot just to remind me I’m not worth the cost.

The system is built to make us feel like nothing—like our lives and our health don’t matter. And honestly? That’s the part that stings the most.

Thanks for reading this my Lovelies

N.A.Z.

Discontinuing Medications. A Pleasant Surprise!

Featured by N.A.Z., posted in Health

Why did I stop some medications? Well, I have a swallowing condition. It’s so much more than just “difficulty swallowing” but I’ll leave it at that for now. There are just so many pills. I could not swallow them all. I’m used to taking all of my psych meds, so that wasn’t as much of an issue. But I had a lot of other ones and I’m just like, this is ridiculous. I looked at the pills, what they were for, and what some of the withdrawal side effects were.

So in total, I discontinued 4 separate medications. Eventually, I saw each of the prescribing physicians for the prescriptions that I had discontinued.

The very interesting thing was all of my conditions were doing the best that they’d ever been and I was not on medications for any of those conditions anymore! 🤔 In total, I had discontinued 4 medications, and each of the specialists told me to that they did not recommend I continue those meds as this time because there was no longer a need for them! The thing about that is, they would not have known the status of my conditions if I had not stopped the medications! They would have assumed that the medications were the reason behind, the conditions improved status.

So, now I’m on four less pills daily than I was before. I asked the pharmacist which pills I could crush… Because you can’t just go crushing all pills. Sometimes it changes what they do in your body, so I made sure I confirmed that, then for some of the vitamins I got the chewable kind of vitamins so that was helpful.

My ENT, (ear nose and throat doctor), was very pleased. She actually looked at my throat and saw that there was no longer any inflammation or irritation. She is such a sweet lady. She has amazing bedside manner. And she sat down like she was ready to sit comfortably for as long as it took to hear everything that had been going on since the last time I saw her, three years ago. I really appreciate it that she did not seem like she was in a rush to get it over with and see the next person. My cognitive impairments are not much of and issue when I don’t feel rushed.

She also told me something that was very interesting and potentially life-saving! From years ago, I used to be able to take all of my psych meds at the same time. That was 9 pills! She told me to please stop doing that! She said I would be surprised how many people end up in the ER because they’re trying to speed up the process, by swallowing multiple pills at the same time. She also said that I know I have a swallowing condition in addition to that, so please swallow them one by one.

An interesting thing that she suggested was for each pill, lubricate my throat well with water first (I also have dry mouth which affects your throat as well) and then think of the pill, what it’s supposed to do in my body., And then visualize it doing that in my body. She said to be mindful. That was such a wonderful suggestion, and I actually turned it into prayer.

So now, instead of focussing on the fact that a lot of these allopathic medications are toxic (which they are)… I focus on being grateful that God created the science that made these medications, that have been very helpful to me, even though they have also caused me, some frustration to say the least.

It was such a wonderful interaction with people working in the healthcare system. There have been a lot of things that have annoyed me about the system.

I feel like I have to take the time to acknowledge that there are some really amazing doctors and receptionists and nurses that really want people to heal and be healthy. You mean more to them than just confirming your version code on your health card, to make sure they get paid.

Even her receptionist was exceptionally kind. she remembered me from my phone call a few weeks prior. And she said if I can get in soon then I don’t have to get a new referral from my family doctor. She was like “who wants to do all that work?” And then she stopped me from sitting down in the waiting room, and told me to go right into the examination room. She said that she noticed my cane so “who the heck wants to be standing up and sitting down multiple Times?” She said “I’m not a cruel person like other people.”She was so sweet. Like a ray of sunshine.

The pills that remain are far more manageable. I was even preparing to go to a compounding pharmacist. A compounding pharmacist can make a pill into a dosage that does not exist or even for instance, a liquid versus a pill form. You have to pay for that, so that’s an issue for me.

Now that I have pills that I can crush, pills that I can chew and a decreased amount of pills that I have to swallow. It’s working well for me. Also, when I take my pills now, I feel a sense of gratitude and peace as I’m very mindful😊

Who would have thought, I ever would’ve had a smile after taking my multiple… multiple… multiple… medications? Did I say multiple? My memory and all…

Have a great week my lovelies!

Mai

How not to be a douche to people with visible disabilities!

by N.A.Z., posted in Health

So sometimes I walk with a cane. I have severe back pain. A cane is considered an assistive device (so is a wheel chair, shower stool, toilet rails, crutches etc. There are many more but you get the point)

My cane is what makes my physical disability visible. Without it you would have no idea I had a problem unless I told you. I think in general people mean well but sometimes they don’t know when they’re being unsupportive, intrusive or insensitive. For instance some doors are heavy for me to open and I can’t tell you the number of times people have been so busy staring at my cane that they let the door slam in my face. Thanks! I appreciated that so much. (That was dripping with sarcasm and disdain in case you didn’t catch that)

People will stare at me and my cane looking me up and down as though I can’t see them. Like you know this is not a white cane for the visually impaired right?! I saw you, see me, see you and you’re still looking. That’s so frickin rude! When you’re like five you learn not to stare. Guy you’re like a 50 year old hard back man. You should know better!

In their defence I think people are curious because I’m young and a little stylish. I don’t walk with a limp so it’s like they’re confused or something. Some people will come up to me and say “oh did you hurt your leg? I hurt my knee once, it was bad” on a good day I can appreciate that they’re trying to show empathy and compassion. But on a bad day talking about my condition is the last thing I want to do and I think how dare they. Like if I was bald from chemo would I want everyone coming up to me saying “how’s the cancer? My aunt had cancer, what kind do you have?” Like maybe you don’t want to talk about the damn illness. What gives people the right?? Like what if I just walked up to someone and said “how’s your anal leakage? I hear it can be bad sometimes…” or wow that really looks like a herpes sore on your lip, hope you notified all your partners” like I’m exaggerating to make a point. But wouldn’t that be ridiculous?!

Then I’ll be in a store here that sells assistive devices and I’ll end up talking to someone in their 80s that either smells like bengay or urine.. let’s be real. So first they assume I’m buying the devices for my mother or grandmother. I’m like nope it’s for me, chronic back pain and they say “no you’re too young to have back pain” to me that is the most insane reaction. I think to myself “yeah bitch I’m 40 years old and I want fuckin handle bars around my toilet for the fun of it!” But I don’t say that I say “well I do soooooo I’m not sure where we go from here” I say it half joklingly and they’re not sure if they should laugh or feel uncomfortable.

People have been making this comment to me since I was 11 years old when the chronic pain started. Yup! 30 years of pain everyday. It wasn’t this bad when I was younger. It’s degenerative. But what do you say as an 11 year old when an adult says you’re too young to be experiencing the pain you’re having? So frickin annoying.

If one more person tells me all I need is vitamin A or B12!!!!!!!! In my mind I throat punch people for that kind of idiocy. Don’t worry I’d never physically hurt someone in real life I’m more of a danger to myself than anyone else. Depression…. a story for another day.

I just can’t get over the staring as though you can’t see them. I only use my cane when it’s really bad. I purposely don’t use it at work because my clients, who have mental illness, they get so concerned. I’m touched that they are so compassionate but then it takes the focus off them and that shouldn’t happen. They ask me a million and one questions and make all these suggestions. When they make suggestions like “take vitamin B12” or “try naproxen I take that” it doesn’t bother me at all. I think it’s sweet because they don’t want me to be in pain. But I found it was too much of a distraction so I stopped using it at work. Staff used to stare also but it was more with a look of pity and I hated that.

So stop staring at people with disabilities. We’re people too. We can feel awkward and uncomfortable when we’re stared at. How would you like it? Just think about that. And if you did have anal leakage would you want someone to come up and ask you about it in the middle of Walmart?!?! Or your erectile dysfunction, irritable bowel syndrome, STDs. That likely never happens because your issues are invisible. Don’t treat people poorly just because they have things that are visible is all I’m saying. Hold a damn door open fuck! Now there are many considerate and helpful people. This is not directed at you and I thank you for your thoughtfulness, your warm smiles and wishing me a nice day. You don’t know how much those things can mean to a person. Especially with depression on top of everything else. Little things can mean so much to people. You never know what someone might be going through.

Just treat people how you would want to be treated… unless you’re a masochist. Treat someone the way you would want your mother to be treated.. unless she abandoned you and is a raging bitch. But you get what I mean. Don’t be a douche is what I’m saying.

That’s mai 2 cents!

Have a wonderful weekend my lovelies!

AQ

Why I started this blog

Featured by N.A.Z., posted in Health

If you knew how long it took me to set up this damn blog! Not that it’s hard because I set one up in a few hours a couple years ago. But because I’m on some medication that makes my brain foggy. It just doesn’t work sometimes. People don’t believe me when I say my brain is not working because I guess I’m too damn high functioning for someone with a visible disability AND an invisible disability (generally I like my disabilities to be invisible and my suffering to be in silence the way it was meant to be!). I know some of you were like “invisible?” what’s that? some may even have wondered if people with disabilities have super powers. I’m telling you right now that we don’t (while I’m nodding my head in a clear yes!”) Don’t tell. We have meetings on Wednesdays at 6:30.. We’re trying to take over the world…. dammit I let it slip. Well we’re all friends here so I’m sure you won’t let the cat out of the bag. Where do some of these sayings come from anyway? Why was the cat even in the damn bag to begin with? And why do people tell you to drink “fluids” when you’re sick. Like “oh I was straight up drinking sand and paper this whole time. You saved my life!”

Anyway I digress. Happens a lot when the pain is so bad you can’t think straight. As a result of the pain as I said in the about me section I’ve been lying in bed like 20 hours a day since December. I was working before that but still in pain. So Netflix is great and all but I’m bored AF and I have cabin fever. So I always have things to say and I found people were really enjoying my posts that I wrote on facebook so that is how this blog came about. Unfortunately lately I have been swearing like a sailor so if that offends anyone.. move on to someone else’s blog because I really don’t give 2 fucks! (joking). Where did that saying come from?.. Like someone decided that 1 fuck wasn’t enough?? I really wonder about things sometimes. That’s what you do when you’re in bed all day and fairly isolated. I never really used to swear. There are so many other interesting words in the English language. Like saying troglodyte instead of asshole is quite liberating. But for some reason the swearing is so freeing right now. I’ll try to tone it down. But some times an “f” bomb is the only choice. You know what I mean?

It’s so frustrating because all I like to do is help people. My clients at work, my friends and family, strangers. I love helping people and now I’m the one that needs the help. So difficult for me to receive but I’m grateful that I even have so many people that love me enough that they’re willing to help. I’m truly blessed but at the same time in pain so I’m super bitter and irritable and even more sarcastic sometimes.

Once I was at a clients house and she said “oh you forgot to zip up your boots” I was like “nope it’s not happening today I’ve reached my threshold for bending already” and that was that. Nothing is worse than having to wait as your mother zips up your boots before you go out (that’s a lie there are MANY worse things! I’ve been through a lot of them). But Im grateful she’s so glad to help. I’m 40 so I just feel so shitty that my “mommy” even has to do it but I’m glad someone is willing to do it. Some people have no one but I’m surrounded by a lot of love. Truly grateful for that.

My chiropractor said if it wasn’t for bad luck I wouldn’t have any luck at all! Specialists are frequently shocked at the fact that I’m able to function with such high degrees of pain. But I’m the type of person where you could be like “AQ, your leg just fell off” and I’ll be like “I know, pay no attention to the gaping wound, I have another leg I’ll just use that and hop. I feel like there’s someone that needs love or help somewhere.. that’s more important.. I’ll worry about my stuffering later”

And that’s the problem. Later never comes. Then things just get worse and worse. I can’t keep helping people or worrying about others needs to my own detriment.. Remember I said I’m 40.. Apparently it takes a while for things to sink in sometimes because I’m still resisting that lesson.

THat’s it for now. I’ve been sitting in an uncomfortable position for a while. Bet you’re somewhat curious about the nature of my disabilities. Or maybe you’re not and I hope you get mauled by wild racoons! Just kidding. It doesn’t matter to me. Even if no one reads this, that’s not the point. I can imagine that lots of people are reading it and it’s just as good. It’s therapeutic I find. So read, don’t read, won’t twist my knickers! Again, where do these sayings come from?!?!?! If you do read it thank you and I really appreciate that.. Truly.

Have a wonderful weekend my lovelies,

AQ