Category: autoimmune diseases

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.

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

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.)

Ask Me Questions About my Mental Health or How to be a More Effective Loved One.

by Just Mai 2 Cents, posted in autoimmune diseases

I can come at this from 3 ways. I have a mental illness. I graduated with a degree in psychology and I also worked in the mental health field for over 10 years.

I’ve seen my family struggle and the families of others. I’m trying to put purpose to my pain.

Please ask me any question about my experience and questions about how loved ones can be more effective and have a better understanding. Ask in the comment section below.

This does not take place of medical advice or therapeutic advice.

Have a wonderful week my lovelies,

Naz