Author: Just Mai 2 Cents

Music, disability, healing, creativity, humor, and honest reflections — one day at a time.

Are you sick of your doctors pathologizing symptoms or dismissing everything as side effects once they find out you have a mental illness?

by Just Mai 2 Cents, posted in autoimmune diseases

This has really been pissing me off as of late. (and that’s the understatement of the year). My whole issue is that I was taken off a psychiatric medication 1 year ago.. I called that “the beginning of the end”. I’ve probably mentioned this in previous posts but I have ridiculous memory lapses. It was the beginning of the end of life as I knew it. Still suffering from the effects of that over a year later.

So yes I understand that many psychiatric medications have side effects.. And sometimes even worse withdrawal. But just because it’s on the list of side effects, doesn’t mean it’s not also a disease or physical health issue. And If over 15 years of psych meds I’ve consistently had 5 main side effects and now I have like 97 (probably an exaggeration I haven’t counted).. Sure maybe they’re listed as side effects but maybe there’s also something wrong with my physical health that’s being ignored. My pharmacists, psychiatrist and psychotherapists are all scratching their heads because they can’t figure out why I’m having such rare and severe reactions to medications. Some of which I’ve been on before and had no reaction to. The pharmacist did explain that when I started certain meds 15 years ago my body is completely different today so it’s not as uncommon as I would think for something to have worked before and not to work today.. or for a side effect not to express itself for 14 years. I still feel skeptical about that.. Just the amounts of things that are going wrong.

I’ve also given into the whole “it’s a side effect so lets ignore it” thing. Side effects of 2 of my meds were joint pain. I had this horrible pain in the joints in my foot. Excruciatingly painful to the point where I thought it might have been broken (not sure how I would have broken it because I’m not exactly a speed demon on my cane lol). I put off getting it seen to because joint pain was a side effect. Went to my doctor and he couldn’t see anything in terms of inflammation. I had a feeling in was arthritis. He had it x-rayed.. It was arthritis. I found this strange. I had expected arthritis in my spine because of my condition. I actually already have arthritis in my spine. But in my foot?? That is not a side effect. I got scared because there are actually 360 joints in your body and I was concerned that I could get it in more joints. I do have pain in other joints. I’ve been keeping track of all of my symptoms/side effects/withdrawl symptoms. Many of these overlap with a few actual diseases. Specifically autoimmune diseases. I’ve been convinced this whole time that there is some kind of underlying physical health condition or disease. Once it is diagnosed the health care “professionals” would realize “oh it’s not 97 separate random issues.. they’re all components of this one disease” I’m convinced they will figure this out after I’ve died from the disease. And they’ll be like oops.. it wasn’t only side effects.. and it wasn’t due to the grief of losing her psychiatrist. (he’s not dead he was allegedly on medical leave but I’ve found out that there was a complaint and investigation about him. There are certain things he needs to do before he can be reinstated). If I hear that one more time!!!! I have been through so much crap in my life and you’re trying to tell me the reason my body is having these strange and rare reactions is because I’m “not expressing my emotions about my psychiatrist being on leave so they’re coming out physically”. wtf?!? What do you know about what I have or not expressed?? Did you even ask me? You’ve seen some of his other patients and they’re “taking it really hard” so you’re going to paint us all with the same damn brush. Seen one crazy seen em all?! If anything I have intense anger towards him and I fell I express that extremely well. F*** outta here!. Yes I’m aware of the mind body connection. Yes in other areas of my life that is definitely true. But you are off the mark here. Don’t use big theories you don’t understand. Sorry is my irritation showing? Well at least I’m expressing my emotions right?

So my doctor was going to send me to a chiropodist/podiatrist. I was thinking.. wouldn’t it make more sense to see the specialist that actually deals with and assesses inflammation and arthritis first!? Also a cardiologist because of some of my sypmptoms and test results, I looked it up and it’s a rheumatologist. Why am I, the patient, the person the one to look that up and bring it up to him and now he’s doing the tests? I’m not even mentally stable. Why am I doing your job? Yes I’m anxious but if you mention that as the cause one more time! I’ve had anxiety since I was 8. These things have not happened before. Something different is happening here. I’ve seen the results to the tests he just ordered. He can’t ignore those numbers. It will be an interesting conversation.

Unfortunately sometimes you can’t just sit back and expect the health care professionals to do their best, do their job, go over and above. I’m researching as best I can which is so anxiety inducing but If I hadn’t been researching I wouldn’t have discovered some pretty important things. Frustrating to say the least.

Something to keep in mind. I work at a mental health agency and they ran some statistics and found that I think over 90% of our client deaths were physical health related. Mental health you would assume the higher percentage would be suicide. The reason I know what an internist is because I’ve accompanied clients to their appointments. Internists deal with people who are on multiple conditions and have multiple physical health conditions. That describes so many of our clients. No coincidence that clients on 7+ psych meds also have a lot of physical health conditions. The medications are toxic but I still take them because what’s the alternative? But who’s “crazy” the person who takes a pill that will not cure them, causes many side effects, even worse withdrawal effects if you try to come off, causes obesity, diabetes, heart conditions, kidney conditions, thyroid conditions, lowers your life expectancy….. but yes doctor… I be takin my poison… I mean meds doctor… I sold my guitar and piano because I can’t play them anymore because the hand tremors doctor… my brain is slow but I still be takin my poison… I mean meds doctor.. now I’m obese but can’t lose the weight because the poison… I I mean meds changed my metabolism and I can’t loose it doctor… so now I’m at a greater risk of diabetes doctor. Thanks!! (that was dripping with sarcasm and disdain in case you missed that) And a psychiatrist that was one of my colleagues actually said “there’s no way that client can lose the weight unless they come off all of their meds” That’s how the psychiatrist knew the client was off the meds.. because they were losing so much weight. Wow.

Anyhoo, to people who are on psych meds and for he doctors who treat them. Don’t be so quick to dismiss things to being psychosomatic or side effects because sometime they’re also symptoms of real physical health diseases/conditions.

Anywho that’s the end of my rant for now.

Have a lovely weekend my lovelies. I actually have no idea what day it is today but I’ll go with that.

AQ

You’re with me on the Mountain top, but what about when I’m in the Valley?

by Just Mai 2 Cents, posted in autoimmune diseases

One thing I realized about who my real inner circle is. What i refer to as my inner circle are my real people who truly care about me and love me. They believe in me. They uplift me. They believe that I will be well again someday. There’s no doubt in their minds about this l. They don’t care what state I’m in mentally. Like they want to know that I’m ok but it doesn’t change the way the feel about AQ as a person or what she can accomplish. They are sometimes family but often they are close friends. Friends are the family we choose.

What i noticed is my inner circle has gotten smaller and smaller. I’m ok with that. It’s about quality and not quantity. But I noticed certain friends, who at one point were in my inner circle liked to be around me and congratulate me when I had achieved some type of success. When I was in the mountain top. But life has peaks and valleys. I found these same people when I was in the valley, struggling, in some kind of episode, unable to work as a result. All I heard from these people were crickets. In their defence I know some people can’t handle it when I’m not doing well. They don’t know what to say. I get that. But just say that! Don’t just stop communicating with me completely. Send me a text that says you’re praying for me.. send me a joke, send me pics or videos of dogs and horses (because I know that horses are really unicorns in disguise! Don’t let the secret out! Lol.. I’m only half joking though 😊). One of my friends who has a few kids said maybe this one person is super busy because she has a lot of kids. I totally get that. Kids keep you busy. But what I said to my friend that made this comment was.. did you have the time to speak to me for the last hour? She said no. Which I knew. (I kept asking her if she needed to go because I could tell she was busy with her kids) initially she started to say she had to go but then she said no it’s ok let me know what’s going on. She’s one of the friends I don’t call often so when I do she knows something is up plus there were lots of things she wanted updates on. So when I said to her did you have the time to speak with me just now for over an hour? She said no. And I said that’s the point. You have kids, you’re super busy.. but you made the time when there was none. That’s the difference. Then she understood what I was saying about my other friend.

One of my friends will just say “I listened to/read your message but I have absolutely no idea what to say. I respect that so much. My issues are so complicated no one can “fix” them. I don’t expect my friends to fix anything. But being able to acknowledge your limitations is huge. And being able to articulate that although you love me you’re out of your depth but you’re always here here for me even when you don’t know how to respond. I have so much respect for that!

Yes I have an amazing psychotherapist but she is new to me. So she’s been doing a lot of damage control. Trying to figure out who AQ is and put out all these little fires first. it seems when things go wrong with me it’s not just 1 thing it’s like 97 different things at the same time. I get incredibly stressed and overwhelmed. My therapist was like try to focus on what you DO have control over. That way you won’t be so overwhelmed. It’s fine to be angry about how your agency screwed your over but if that’s where you put all of your focus and attention you’ll get even more mad and nothing will get accomplished. You’ll feel more stressed and overwhelmed. So helpful.

Let’s just say someone was helping me put a case together and I had grounds to make a human rights claim. But the process of putting a case together is so incredibly stressful. So much so that I’ve been breaking out into hives. Stuttering (which I never have before). The person who was helping me was concerned because he’s helped others put cases together and they had no mental illness. Some still had breakdowns as a result. My family was very concerned. I was struggling with depression and a billion other things. They were like you’re on sick leave you should be resting! But I was like I have to fight this! This is an injustice and it’s really messed me up in a lot of ways” in the end I realized it was literally (and figuratively) making me sick. But I’m glad I at least tried. So many things in the past I did not report, did not advocate for myself. So this was very important to me. I’m totally disgusted with the agency not just from this incident but in general there were a whole bunch of issues. I had made my mind up to leave a year and a half before but I was so burnt out from the very job I wanted to leave, I just didn’t have the energy to do a job search. That’s like another job in itself. So Many people around me are disgusted by the agency. The consensus is that this is an agency that prides itself on advocating for people with mental illness and teaching other agencies about the importance about workplace accommodations and work life balance.. stress management. This is how they treat an employee that has a mental illness??. Fuck them.. and their mothers and I hope they get mauled by wild, rabid, syphilis infected racoons. Did I mention I’m angry af and also incredibly irritable? Because I am! No I don’t plan to hurt anyone depression is anger turned inward. That’s been more of my problem. Plus if I hurt someone verbally I’m just hurting myself. I’ll just let the racoons do it lol.

Anyway this took a turn but that’s ok. Just blame it on the “crazy” it must be useful for something lol. But I feel much better now because I let go of the legal stuff and I’m focusing on my recovery right now. What a weight off my shoulders.

Anyhoo what I started to say is I have an amazing inner circle who supports me and holds hope for me when I don’t have it myself. FYI not having an ounce of hope is a horrible place to be.. I do have some hope now though.

I say all this to say that it’s so easy to celebrate with someone when they’re on the top.. but where are you when they are struggling? My people are amazing. They’ve been incredibly loyal and consistent through the struggle parts. So when they celebrate with me it’s even more special because they were there with me in the valley and they know how far I’ve come. Amazing!

I am so blessed! So grateful and thankful to the amazing, phenomenal, compassionate, empathetic, hilarious, understanding, supportive, loyal, patient and caring people in my life. Wow some people don’t have one person like that and I have several?!?! So humbling. If that isn’t God I don’t know what is. I don’t mean that in a religious way. Some people came as a big surprise. They love me so much and I didn’t even know!

Have a wonderful weekend my lovelies. Be grateful for the amazing people in your life. Even if it’s just one person you are blessed!

Peace & Blessings,

AQ

Positive/Negative things that have come out of Covid in My Life

by Just Mai 2 Cents, posted in autoimmune diseases

I’m starting out with something negative that enrages me! I noticed on google and on people’s websites there have been no changes made as to whether companies are open/closed during the covid era. I understand that this is the first global pandemic and it’s new for everyone. Maybe making changes on google about your hours etc and you website is more difficult that I realized,, But you can’t update you damn voicemail to inform us whether your’e open during covid, closed during covid and if you ARE open what your new hours of operation are!! How fricken hard is that? You can change your voicemail remotely from home. Incredibly inconsiderate and unprofessional. Then you go to a store and it says it’s open until 9pm.. You get there and see that it close at 5pm. The only reason I know that is because I went to the physical location and saw the typed sign in the window. Why can’t you put that in your voicemail?? My friend has since told me that people are updating things like that on their instagram. How the heck was I supposed to know that??

Spoke to a relative in Ghana and she said the government reluctantly lifted the lockdown. She said they had to because people were dying of hunger. I asked her if she was being literal. She said yes because there are many people who work in order to have food for that day. If they don’t work they don’t have money for food for that day. The lockdown was 3 weeks so people died because they had not food during this time. The government tried to get food to some people but couldn’t reach everyone.. This was so tragic and horrifying. I was even more grateful for the things I’ve had. The only times I don’t it is if I forget or I have no appetite. It’s never due to a lack of food. In Toronto even if you can’t get healthy food, you can still get food. Food banks don’t have the healthiest food but it’s food. Even those 1 dollar soups you can buy. Riddled with sodium but it’s still food. Wow. I’m here ordering food from uber eats.. I can’t really cook right now because it’s very painful to stand.

So a positive thing that happened today which may seem like a negative. I was having “serious” side effects from an antidepressant. For these effects it advises you to contact your doctor as soon as possible. The effects that were the most concerning were issues with my eyes. I have blurred and double vision. One of the issues with the vision problems is that some can cause permanent damage.

My psychiatrist told me to discontinue the medication and some of the other side effects stopped. The pain in my eye drastically decreased but I still have the blurred and double vision. My psychiatrist said it would probably be difficult to get into an eye doctor. I mentioned it to my family doctor and he said he does not have the equipment to check the health of my eye and that I should go to a optometrist. Called mine and of course they hadn’t changed their voicemail and it did not give me the option of leaving a message. I checked his facebook business page. He had tons of youtube videos where he discussed social commentary.. Even footage of him using what seemed like expensive sound equipment. He had the time to do all that and couldn’t post 2 sentences that the clinic is closed??.. Annoying. I hate when things are avoidable and unnecessary I was already tired of his clinic because it basically became an assembly line. Sometimes I had to wait for an hour or more. He no longer had the time to see every person so randomly some other person you hadn’t met would come and check you eyes.. No introduction or explanation or anything. I was thoroughly annoyed.

So I went to Ontario College of Optometrist. That’s their regulatory body that governs everything they do and puts together protocol for Covid. So I checked for all of Toronto and Pickering. There were very few open during covid and it was only for urgent/emergency care. Most were only seeing existing patients. There was one I found that was taking non patients. It was in the next city over but only a 15 minute drive. I assumed he would have been very busy. He called me back the same day and scheduled me for the next day. Very kind and caring man. I like It because it’s a very small practice. He told me to get a form from my family doctor so that I wouldn’t have to pay. I really appreciated that. I was probably there for 2 hours he did every test in the book just to be thorough. I really appreciated that. He said my eyes were drastically out out of alignment. He ofsuspected it was the medication but not necessarily from the medication that was just discontinued. He said it could have been from one of the medications I’ve been on for longer.. or the combination of the 3 medications I”m on at once. He said I should wait a couple of months to see if it resolves itself once the medication is out of my system. If it does not go back to normal he will have to make a new prescription for my glasses including prisms. This fixes the problem. He had some prism lenses and tested them on me and it worked perfectly .

The good think about that clinic is it’s right by the lake. The customer service was amazing. The receptionist really knew what she was doing and warmed up out of her “work mode” once I made her laugh a couple of times. It was very important for the optometrist to be sure that I understood everything he said and the concepts he was presenting. Kept asking if I had any other questions. He does not know me!! I always have questions! He does not know what he was getting himself into lol, Very kind, caring, gentle, professional and knowledgeable man. So after covid I’m going to switch to him as my treating optometrist. So that was the positive that came out of covid today. Even though I ended up with a diagnosis I was treated like a human being. He did not make any ignorant comments about by having bipolar. You’d be surprised how many insensitive and ignorant things specialists say once they know I’m on lithium. Most people know lithium usually equals bipolar disorder.

All in all a good day.

Ultrasound for my thyroid tomorrow and an X-ray for my foot that his been consistently painful fo rover 2 weeks. My body is falling apart,

Have a wonderful week my lovelies. Stay safe. Practice social distancing yada yada.

Peace & Blessings,

AQ

The mishandling of Covid 19 and the Coronavirus

by Just Mai 2 Cents, posted in autoimmune diseases

Now I am aware that people have died from this virus that is very tragic and sad.. I do have a very warped and morbid sense of humour. But nothing I’m about to say is intended to minimize the loss of thousands of lives. I think it’s 4,000 worldwide. It’s a big number because the overall number of cases is somewhere around 238,000. That means that all the people who die, 20% die. Most of the people who have died have been elderly or had other underlying physical health conditions. I’m not saying that to imply that those people don’t matter (my grandma is in a nursing home and I was so relived when they called today to say they’re not accepting any visitors. Talk about a high risk population. Even my doctor said if she gets the flu, it could be her last flu. Damn. He didn’t have to say it like that,

I think the media and politicians did a piss poor job of handling it. I understand it’s a pandemic but that doesn’t mean you need to say it 137 times every single day and twice as many times on Sunday. Not every single article should contain the word pandemic. A lot of fear mongering which is completely counterproductive and unnecessary.

For the majority of people, 80% in fact, they will just recover from it like the flu. The masks I thought were ridiculous because it increased people’s anxiety and they’re basically useless. The virus can enter your body by any mucus membrane. Your eyes are a mucsus membrane and they’re usually open! It’s like you trying to secure your house and lock the front door and have state of the art locks and deadbolts, but you leave the back and side doors wide open. What the hell was the point of that?! Ridiculous. I laugh not because it’s funny but because it’s absolutely ridiculous. They could have put more effort in clearing an area where someone is know to have had it. The virus stays in the air for 3 hours! But no one’s really doing that.

And then people hoarding toilet paper and whatnot?!?! What about food and water? Hate to break it to you but if you have no food or water you will have no need for toilet paper! smdh. Do you really need 5 L/G of hand sanitizer?? How much sanitizing are you planning on doing? You basically have enough to last until 2050! Did you ever think that maybe, I don’t know, people other than you exist and they might need some tool

I think I missed something because there was reference to a 30 day period and having enough for that amount of time. But what happens after the 30 days?! The virus still exists is still spreading and there still is no vaccine or cure.. So what is the point of that? I must have missed something because that makes absolutely no sense to me whatsoever,

When I went to the hospital the other day for an appointment, they didn’t even want to touch my health card.. They were like “just put it right there” like it was contaminated with the plague. Calm down people.. Just use gloves or something. It’s not that serious.. Well at least not as serious as everyone is making it. I do get that the fact that there’s no vaccine or cure it will continue to spread and the death toll will rise. That’s quite concerning, I get that. But the politicians and media I feel should do a better job at keeping us calm.

I called a 24 hour national distress line at 3am (for other issues that have no relation to covid 19.. I know you didn’t think there were any other issues in the world but that, but really there are) I was on hold a painfully long amount of time. If I hadn’t been ready to drink the cool aid at the beginning of the call the hold music surely would have done it! Humour is my coping mechanism.. I thought that was funny. Some probably don’t. I feel like when I’m depressed there’s nothing like some good ol suicide humour to lighten things up. My point was, I’m sure that they had an increase in the volume of callers because everyone is panicking about the covid 19.

So 4,000 deaths world wide for cover 19. 45,000 deaths to suicide per year in the US. 80,000 deaths due to diabetes. I really feel like we don’t have our priorities straight. There are illnesses that you are far more likely of dying of but no one is flocking to therapy or improving their eating habits and exercise. But this new thing that most healthy people will survive,, people are buying up the stores get 12 packages of toilet paper and tons of hand sanitizer, Where is that enthusiasm in taking care of your mental or physical health in general. Ridiculous fricken joke in my opinion. Again it’s not a joke that people are dying. But just in the way people are responding to it.. so a pandemic is a big deal, but the many epidemics that exist.. Not so much?

I feel sorry for people with allergies. They’ll sneeze and people will give them the side like “is sneezing a symptom?! I gotta google that so I can know if I should be hysterical right now” It might get you a seat on the train though (too soon?). That would suck if you got quarantined for having allergies.. like “aint this some bullshit! I swear my Benadryl just hasn’t kicked in yet.”

Anyway, that’s my 2 cents. I hope that everyone stays healthy and there is an end to this soon.

Have a lovely weekend my lovelies,

AQ

Why I Hate Valentine’s Day

by Just Mai 2 Cents, posted in autoimmune diseases

**Trigger Warning**

To many, Valentine’s Day is a wonderful time of year. But to me it’s a horrible anniversary of one of the worst things that’s ever happened to me in my life. Believe me, that speaks volumes because my life has been absolutely horrible at times. I do acknowledge that it hasn’t all been horrible, but a lot of it was.

Someone I had just broken up with committed a horrible and violent act (I try to stay from using the “R” word but I’m sure it’s understood. Sorry if that triggered anyone) and as I was leaving he said “happy Valentine’s Day.”Really!?!?

So for most the words “happy Valentine’s Day” or “happy love day” as one friend said to me.. are lovely, but more often than not, they are incredibly triggering for me. Those words do not conjure up thoughts of love and happiness, rather nausea, anxiety, fear, a sense of being unsafe, confusion, racing heart beat, sweaty palms and flashbacks. When someone says those words in my mind I’m like “thanks, you just triggered me even though it’s totally not your fault because who would have guessed the horror I’ve been through. And that I easily could have died that day?” but I straighten my mask (that has practically adhered to my face by now,) and say “thanks same to you” rinse and repeat.

But it’s not just people saying it to me. Do you know how difficult it is when one of the worst and most frightening times of your life is marked by a commercial and international fuckin holiday?! Come on!! Really tho?! Displays in every store, commercials. I can’t even watch the women’s channel for the whole month of February because that’s the them of everything. I like the corny movies on the women’s network!! Don’t judge lol. Facebook, Instagram, Twitter, emails. Like this toll highway even sent me an email with Valentine’s Day wishes. There’s no escaping it.

So how was my day yesterday? Triggering AF! Partially because I’m already struggling with depression mainly brought on by severe chronic physical pain, so I was too weak to put on my armour. I was all vulnerable and exposed. Dammit! I was ok last year. But Valentine’s Day was nowhere near where my trauma began. So obviously I started to think of many other traumatic things that resulted in my PTSD. I’m lying in bed because that’s the most comfortable I can be in terms of my physical pain, but it’s one of the worst things you can do for trauma or depression. So do I lie in bed to help my physical pain, or get up to help my emotional pain. Keeping in mind that an increase in physical pain feeds the depression. Hmmmm another Catch 22 how does one make a decision like that?? Why should one have to make a decision like that?! That’s my life people!

I hope everyone else had a happy Valentine’s Day! Love is a wonderful thing.. or so I’ve heard hahaha just kidding.

Have a wonderful weekend my lovelies,

AQ