Discontinuing Medications. A Pleasant Surprise!

Featured by Just Mai 2 Cents, posted in autoimmune diseases

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

Why?

Featured by Just Mai 2 Cents, posted in autoimmune diseases

I was having a conversation with my friend the other day and he was saying he doesn’t ask “why” about the painful things that he’s been through in life. I, on the other hand, am different. I am grateful for the “why”. It is always revealed to me eventually. No matter how horrible the experience, there has always seemed to be a purpose to my pain that has helped me to help others and become a better and more compassionate person. I would not be who I am today without each painful and sometimes traumatic experience I’ve been through in my life.

Things like childhood sexual abuse, rape, domestic violence, mental and physical illness. It would be easy to sit in place of self-pity and anger indefinitely asking “why” from a negative and bitter place. After keeping things bottled up for years I started to become more vocal about what I’d been through. In my personal life, women young and old, started to disclose to me their stories. Many of them had never disclosed to another person ever. They felt comfortable because they knew I understood. If I’d kept it to myself, maybe some of them would never have told another living soul. That is so much to carry on your own. I’m glad that my openness about my pain allowed them a safe space to disclose their own. I am happy for that “why”.

I also started doing public speaking. Largely to high school students about my challenges with mental health. I learned that sometimes in just naming an experience, not even going into detail, it can have so much power. I spoke mainly about bipolar mania because I find it quite fascinating. I briefly mentioned that I’ve had suicidal thoughts since the age of 13. That was it! Just from that statement many people came up to the social worker working with me and disclosed that they had suicidal thoughts. Some had a plan to attempt even that week. Some came up with their friends to support them. All of these people chose to get help simply because I stated my truth? That is powerful. I noticed a similar type of openness to disclose when adults find out that I’m a DV (domestic violence) survivor. I’m grateful for those “whys” having been revealed to me.

I also find I’m a lot more understanding and compassionate for people with other kinds of painful experiences. I feel that’s one of the things that makes us human. We’ve all experienced pain, be it emotional, physical or mental. I don’t feel I have to have had the same pain as someone to connect with them. I too have had pain before.

I then worked for almost 15 years in the mental health field. People thought I was so good at my job and at connecting with the clients because I had a mental health illness also. This would irritate me. We were not the same because of mental health issues.. We were the same because we were human and we’ve all had struggles and pain. That’s it! There’s no secret formula. Look at the clients as human beings because that’s what they are. People react well when your approach is that we’re the same.. we’re both human. It’s not rocket science.

I’m happy that I had become very comfortable talking about difficult and sensitive issues from my own life as well as with others over the years. Also for having had so much therapy and recognizing the importance of boundaries. Those things were very helpful in helping my clients. I’m happy for those “whys”. When I went through therapy it was not only for my own wellbeing, it helped in the ease with which I was able to interact with clients.

So maybe instead of “why” we can think “how”. How has this painful event impacted my life in a positive way? How can I use it to help someone else or impact the world in a positive way? How has this made me a better person?

Have a good week my lovelies,

NAZ

Why I started this blog

Featured by Just Mai 2 Cents, posted in autoimmune diseases

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

Mother’s Day

by Just Mai 2 Cents, posted in Life Reflections

I was having such a crappy day. I’m literally so tired of being sick and tired. And then when I think about my upbringing and my past and the lack of protection, there was surrounding me as a child. So many adults in my life and no protection. So many adults in my life and yet some predatory people had such access to me. It’s difficult to harm children if the wrong people don’t have access to them.

I’m sick of just brushing things off in terms of my guardians as “well they did the best that they could do “. What if the adults surrounding you as a child, their “best” was so far below the essential and crucial things you need to deal with and survive this world? Eventually, that just doesn’t seem like enough anymore. I think it’s fair and healing to acknowledge that.

People will say things and want you to “get over things.” It’s very difficult to get over things when they are deleterious to your success and ability to thrive in life. in the present. Also, it is difficult for some of us to identify safe people in spaces as a result of them doing the best that they could do. It’s very difficult to move forward and have progress therapy. If you still don’t have a safe space or people.

I’ll find a way to make it through. I always do.

On this Mother’s Day celebrate the amazing mothers or mother figures you had if they deserve it.

Please hold space for those of us who don’t really have anything to celebrate for various reasons.

This is just my two cents.

Let me try this again.

by Just Mai 2 Cents, posted in autoimmune diseases

So it’s been a while. I think I’ve been in denial about my level of function. I keep having bigger dreams and goals than what my body and mind can sustain. It’s incredibly devastating and depressing to have chronic illnesses. Currently, I have more than five chronic lifelong conditions. Don’t worry though, I’m not contagious. It’s only hurting me not you. That seems to be what matters.

I find I’m grieving a lot of things. I’m grieving the level of mobility that I used to have. The level of athleticism that I used to have. The level of energy that I used to have. The fact that I could multitask at times. The fact that I could do math in my head and come up with the correct answer. The fact that I didn’t need a nap at 9:30 in the morning. So many things.

People have told me of people that I’ve had strokes. They will recover, completely. It will just take a while. I am not recovering or healing. I am not getting better. This IS better. The things that I have are degenerative. And I’m not trying to be negative, but that is just the objective truth. And the fact that many of my healthcare providers and even people in my life, expect absolutely nothing from me?! That is one of the worst feelings I’ve had in my life.

And just trying to navigate the world where my disabilities used to be invisible, and I could “pass” as an able bodied person. Now transitioning into having assistive devices that are very visible. And learning how uninformed and ignorant people can be when they see that you have a visible disability. Some people assume that I’m low functioning, uneducated, unintelligent just because I have an assistive device? You don’t even know me. So because I have a cane, my headphones must be hearing aids. And my glasses can’t be regular vision colour correction glasses I must have some type of blindness even though I just drove into the parking spot. Some people think if you have one, disability , you have all of the disabilities. We live in a very able-bodied world, and if you’re not aware of that, you are likely able-bodied.

Also, healthy people do not understand chronic illness. Bless their souls. People distancing themselves waiting for me to get “better” and then they can get together with me? I hope they’re not holding their breath cause that day likely isn’t coming.

People that have had strokes and will recover completely. That’s wonderful for them. They may have spent months in a rehab inpatient facility.? I would love to be an inpatient rehab facility. I would love to have Disability that didn’t say “we don’t cover any therapies” as though they’re proud of that? You don’t cover the therapies that I need for the very disabilities that you have acknowledged that I have? That I’m being covered for? That’s how low the bar is?

Some people with different illnesses that are not lifelong. There are cheers and there are GoFundMe and there are people rotating to do visits and people paying for house cleaning and therapies and Psw‘s at home and nurses. But because my situation is lifelong and the specialist sometimes can’t say anything more than “at least you still have your humor. “ and they leave it at that not even trying to refer me to somewhere else who could help me if what I have is beyond their scope of understanding. It’s absolutely ridiculous.

That’s all I have to say for now.. that’s just my two cents.

N.A.Z. (Not anyone’s zero)

Labeled Disabled

by Just Mai 2 Cents, posted in autoimmune diseases

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.

I’m Back! I’ve Been Busy with A Lot of Things

by Just Mai 2 Cents, posted in autoimmune diseases

It’s been 3 years since I’ve posted here. I had actually forgotten about it for a while to be honest. Unfortunately I was correct about something concerning my health.. things I’d been considering since 2019.

In a previous post here.. I mentioned that I’d been having a lot of medical tests, as I had developed multiple conditions. I kept saying to anyone that would listen “all of these seemingly random conditions are not random at all. They are part of an actual condition that has yet to be identified. Once it is found, all of these seemingly random issues will be acknowledged as part of that condition.”

In March of 2022 I learned that I was correct. I was diagnosed with multiple sclerosis. I was prepared for it. I’d already been dealing with multiple chronic issues for decades. I had a pharmacist that I trusted. A GP that had been following me for decades, a good psychiatrist and a combination of psych meds that was keeping me very stable in term of bipolar disorder.

A life long chronic illness can cause depression. I already had a lot of “tools” (that’s some therapy talk having tools in your toolbox.. you need tools to build a house, and tools to build your life. Some don’t like that terminology, but I like it) to deal with depression and a safety plan. One of the medications can cause all of the symptoms of bipolar and schizophrenia. I was very concerned about this. The idea of having a manic episode was very concerning. It can be destructive and sometimes it can take 2 years to recover. My pharmacist was very gently trying to say that I was already on all of the medications. So I said it for her. We both laughed.

I’m glad when people can read the room. she basically told me I’m already on the medications to counter any psychiatric side effects. Also, that the dosages were so low those type of side effects shouldnt happen with anyone. She also stressed that if my MS neurologist wants me to take certain medications, there is definitely a reason for it.

I have since learned I’m actually on the highest dosage of medication that exists. They said they have to use an “aggressive approach.” This was because the MS had progressed so much. I think I’d probably had it for 8-10 years prior to the diagnosis. This is common. The only thing other than my meds are clinical trials with chemotherapy medications. I cannot be a part of clinical trials because of my many issues and psychiatric medications.

One of the interesting things that I learned was, it was a very good thing that I was getting intravenous medications. Often oral medications interact with my psychiatric medication. Apparently, when something comes through the intravenous route, it bypasses a lot of the things that happen when you take oral medication. I didn’t have to worry about interactions with my psychiatric medication.

It’s been an interesting journey. The diagnosis could have happened a few years earlier. Different doctors had been requesting MRIs for years. I have a Harrington rod in my back. Spinal fusion for scoliosis. I was told to let doctors know that I have metal if they request any imaging like X-rays, CT scans.. even ultrasounds. The doctors would just hear the word metal, then tell me they would do a CT scan instead.

**Something important to note**.. only an MRI can detect certain MS related features. Many doctors did not know that I actually can have an MRI even though I have metal. The proper thing to do it to ask the radiologist! They will ask the type of metal implant, the year it was done and where the procedure was performed. They may possible need to contact the surgeon that performed the procedure. As simple as that. Likely my MS would not have progressed so severely. What’s done is done. Please help me spread the word.

Please do consult with your radiologist if you are in need of an MRI and you have a metal implant.

More to come on my experience with MS. Wow. If I only had chronic pain and bipolar things would be so much more simply relatively speaking.

Have a wonderful weekend my lovelies. Sorry it’s been so long.

N.A.Z. (not anybody’s zero.)