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Cancel Culture

There’s been a lot of discussions recently on “Cancel Culture,” and for the most part, I’ve kept my opinions to myself. In some instances, I understand why. Dumbo’s murder of singing crows, for instance, is clearly racist and I understand why a company geared toward children would take it down. I think most headlines were inflammatory on the subject because if you read the article, they are only removing it from children’s profiles. You can still access it in the adult Disney programming and if you want you can watch it with your children, along with The Aristocats and Peter Pan, and make it not just a recreational moment but a teachable one and explain to them why the depictions are not okay. 

Today we learned that Pepé Le Pew would be eliminated from the upcoming movie Space Jam 2, but Speedy Gonzales would not. In some aspects, I can see why Monsieur le Pew would be axed from the movie with is misogynistic ways, and merciless hounding of Penelope Pussycat. As a victim of sexual assault, and as a woman who has experienced this type of behaviour first-hand from aggressive men, I can see how his character would be seen as “normalizing rape culture.” However, according to Fatherly[i], “Le Pew’s scene, which was reportedly going to speak on the importance of consent in all romantic encounters, was cut from the movie long before,” these previous cancellations or before an article written on Monsieur le Pew’s bad behaviour was written in the New York Times. This still hasn’t stopped everyone from getting their knickers in a twist about this or voicing their opinion on the subject (like me).

The fact that Monsieur le Pew was axed and Señor Gonzales was not, does bring up some issues for me. I don’t think there is any difference between how Speedy Gonzales is portrayed, in comparison to, let’s say, the Siamese cat in the movie The Aristocats. Both are caricatured versions of ethnicity, which if you look at Speedy’s cousin, Slowpoke Rodriguez (aka Tranquilino/Lento), there is a perpetuation of the idea that all Mexicans are slow and drunk and character uses a gun to help him be more effective where Speedy has his quickness. It seems there is abundant enough reason to eliminate him (not that I’m supporting this, only arguing this), as much as there is reason to eliminate Pepé. However- and I think this is important- why are we not making this a teachable moment for children? Why has it become so much easier to vanquish literature, or characters from this existence or hide it up on a shelf somewhere, where children can’t access it until they are adults? It feels like our children would get so much more out of this if adults/parents/grandparents/teachers, could take a time-out and explain why this may have been portrayed in the way it is, and why it is wrong and why we shouldn’t do that in the future? 

I say this with a parents’ experience raising four girls to adulthood. We watched all the movies in question and my husband and I took the time to explain to them why each scenario was harmful and hurtful. I feel that if we raised our children with that “it takes a village,” kind of mentality, that there would be no need for “cancelling” anything. It seems like they are taking the choice from parents in some aspects, but with rampant disrespect of people and culture and women, there is a part of me that understands why. If we can’t unite and agree as a collective that racism is unacceptable, or that misogyny won’t be tolerated, and that no-means-no, then the problem becomes more about who we are, then about what we are cancelling. 


[i] Pepé Le Pew Won’t Be In ‘Space Jam 2.’ Nobody Is Actually Mad, Harper Blake; 3.10.21(https://www.fatherly.com/play/pepe-le-pew-new-york-times-space-jam-2/)

 

20 Ways You May Invalidate Chronic Illness (Without Realising It)

We all know someone with a chronic illness (or multiple). If you know me, you know someone with multiple chronic illnesses. What you may not know is that sometimes, in casual conversations, you may unwittingly say things that invalidate our illness and as collateral damage, our feelings along with it.

This is me. I have chronic illnesses.

I believe it’s the responsibility of the collective whole to be responsible/accountable for their words. Saying “I didn’t know,” is no longer enough and if we shared this information with you, it is, even more, your responsibility to be aware of your words. There will be those out there who will argue with me and say it’s just words. Or they will say that perhaps we should have thicker skin and not take things so seriously. But words have an impact and everyone is fighting a war that others can’t see. 

  • It could be worse, right? Why yes, it could. But this is my life right now and I’m struggling with it. Sure, Sam over there might have it tons worse, but I’m not living his life and he isn’t living mine. What you can say instead: I’m listening to how you feel and how difficult things are for you. Is there a way I can help? 
  • C’mon, smile. If I had a penny…This, to me, reduces all my problems with my ability to smile. I get that smiling may help with my mood, but it’s temporary. My smiling also helps you to feel better and ignore my problems that may be glaring before you. If I smile things can’t be so bad. What you can say instead: I know it’s difficult to smile right now. And you don’t have to. Maybe we can take your mind off things- how can I help? 
I hate the pain question. It kills me. How do you quantify pain?
  • But you don’t look sick. Every time I hear this, I mentally strangle the person. It just irks my brain that for my illness to be real, I need to look sick. There are many, many illnesses for which there is no obvious “tell.” This isn’t like the flu where you are going to have symptoms like coughing and sneezing. Even with cancer, until you actually begin going through therapy you don’t have visible symptoms. I could stand 20 people in a row with about 80% of them having a chronic illness and they wouldn’t look any different than the 20% who are perfectly healthy. Appearances aren’t everything. Keep in mind many of us have mastered the plastered smile, have perfected the ability to appear healthy because our jobs depend on it. People with chronic illness are some of the toughest I have ever met. What you can say instead: Wow, you look great today even though I know you aren’t feeling well. It always boosts our morale when someone notices the length, we go to feel normal.
  • Have you tried __________? This one is tricky. There are some legitimately excellent ideas people have given me that help with certain symptoms. On the other hand, there are some ideas that people have offered that are completely off the wall. We’re talking about strange, miracle cures to these health diets where you only eat avocados for 2 weeks. There’s also been spiritual advice which has ranged from, give your troubles over to Jesus, to needing someone to cleanse my soul with sage. I understand people wanting to offer advice; things that worked for them, but 1.) What worked for you may not work for me. Individuality is important to remember. 2.) You are assuming I haven’t already tried it (everything). When you are chronically ill/ or in pain you go through extraordinary lengths to feel better. 3.) I may not be religious or spiritual. Some don’t want that kind of advice. So, instead of asking Have, you tried _____? Try instead: I know you’ve already tried many things to feel better, I’m sorry it hasn’t helped. Is there anything I can do for you?
Painsomnia is the worst.
  • Why are you on disability? You don’t look sick. Here we go again. Just because we don’t look sick, doesn’t mean we aren’t. Not everything is visible to the naked eye and not everyone is trying to game the system. There are many disabilities that you can’t see, including mental illness which does qualify for disability. You also have PTSD; which you can’t see all the time and you may not know what triggers a person. So, Next time you are out and see someone who gets out of a vehicle parked in a disabled spot, who doesn’t appear disabled, think twice about saying something as they may have a disability you can’t see. Instead try saying: Nothing. Because it really isn’t any of your business and the simple act of asking may trigger someone. Getting disability is difficult. It really is something you earn because you have to fight so hard for it. Just don’t ask. 
  • Push through it. We all have our burdens. I struggled with this one. Another not-so-easy sentiment that is often hurled at patients/people with chronic pain/illness. On one hand we do “push through it,” every day by just getting up and living each day. By raising our kids, going to work, doing the chores, making sure there is a hot meal at the end of the day, going to school, shuttling kids back and forth to where they need to be, by staying at work those extra 2 hours because you were needed- all of this is pushing through because most days are a struggle to get out of bed. And yet, we manage. However, if someone struggles to do these things, or can’t, it doesn’t mean they should just push through it, or even be assumed that they can. These people are legitimately sick and struggling. You wouldn’t tell someone who has a broken leg to just “push through the marathon,” and make it to the end. Or, someone who has pneumonia to “push through it” and go to work. These are things that need care and time to heal. But chronic illness will never get better. What you should say instead: I am sorry you are going through this. I can’t imagine how difficult it is and, I’m here to listen when you need.
Barefoot Contessa!! I love her. If only it were that easy to acquire more serotonin.
  • You should try and get off meds. It can’t be good for you. What about long-term? First, get your nose out of my business. Second, I think most of us would be medication free if we could. And third, I have legitimate things wrong with me that require medication. It would be nice to think fresh air and sunshine would be enough to make me feel better and cure me of my ailments, but it just won’t. This may sound harsh but, (I think many in the chronic illness community would agree) too many people are concerned about the business that is not theirs. This is my body and I have to try and make the best decisions for it as I can. What you can say instead: It has to be difficult taking all those meds just to try and feel a little better. I wish there was more they could do. 
  • You’re so lucky you get to stay home! I’d get so much done if I stayed home. Let’s get something straight, I’m not on vacation; I’m not staying home so I can clean closets or Marie Kondo my house. I’m home because my chronic illness and pain are so debilitating that I can’t work a regular job. I’m home because more times than not, I’m feeling like crap and the very act of getting out of bed takes everything- all my will power to do. I’m not lucky. I have a lot of guilt about staying at home and not being able to help financially in my household. It would really have made a difference if I’d had a job. So, instead of saying this, maybe try this: It must be difficult staying at home. You must miss that life. Do you want to talk about it? 
Sadly, this is not an untrue statement.
  • Aren’t you too young to be this sick? This is universally a stupid question. People can become sick at any age or suffer an accident that leaves them in chronic, intractable pain. Age is irrelevant and shouldn’t be the focal point. Instead, try saying this instead: It can’t be easy trying to manage your illness and all your responsibilities so young. 
  • OMG! I get so tired too. (OR) I worked so much this week; I’m totally fatigued. (OR my fave) You’re too young to be so tired all the time. Okay, vocabulary lesson here. Tired: in need of sleep or rest; weary. Fatigue: extreme tiredness resulting from mental or physical exertion or illness. That really is the key difference between the two words when you are speaking to someone with chronic illness. The tired we experience isn’t the same kind of tiredness you feel after a long day’s work, or after a really intense yoga session. This is the kind of tired you can’t shake even after 12hrs sleep. Even if you caught a nap, it’s a bone-weary tired that you feel all day, sometimes every day and makes accomplishing even the simplest chore, gruelling. Now, being too young? I can’t tell you how annoying this is. People can’t understand why a young person in their 20’s suffers from fatigue because of their chronic illness, or as in CFS (chronic fatigue syndrome aka ME or myalgic encephalomyelitis) is the primary symptom. They can’t understand why a shower is so taxing that a nap is required after to rejuvenate. They assume, wrongly, that they are just being dramatic. Fatigue is a very real thing and it doesn’t obey any kind of age rules. You can suffer from it at 20 or 60. I have 20 something children who suffer from chronic illness and fatigue is a real thing. When I hear people saying damn, lazy millennials, it really ticks me off. What you should say instead: Fatigue is a real thing. You need to take time out and take care of you. If you need any help, let me know. 
  • You need to try yoga. (RME) Or, you need to exercise more. Sometimes, I don’t have words y’all. I have to bite back some well-chosen profanities too. Yoga, while an excellent form of exercise that is low impact and you can modify it for all levels (I was a yoga instructor before my body fell apart and still practice it, though not as much as I should) isn’t a cure-all and shouldn’t be touted as one either. Some people may obtain benefits from yoga, while others may end up needing a week to recuperate, no matter how you modify it. I get the enthusiasm. Maybe it helped you and you want to share it, but everyone is different, with different limitations and abilities and endurance. It may also be that their type of chronic illness or pain levels may be such that it would hurt them more than it would help them. Sometimes I go for months without doing yoga because my body just says “Nope. Not today.” And that is okay. I do what I can when I can. As for exercising more? Same thing. People have to find something right for them if they choose to do it at all. And others may not be able to do any exercise and that is okay. Meditation is really a great alternative, but again, it’s not a cure-all. Instead offer ways they might be able to: sit outside and enjoy the sunshine when they can. Sunshine can be a really great way to shift mood and you only need 15 minutes a day. But I would avoid mentioning exercise at all. 
  • Naps?! You’re so lucky. This isn’t an “I’ve had too much to eat, I need a nap” sort of thing. It’s also not a “Lazy raining, Sunday” type of thing. These naps are a necessity. If you don’t take these naps you literally can’t function. Sometimes, like for me, napping is cyclical. I’ve never been a napper and even stressed out and completely fatigued, I’ll be wide awake. It’s partly due to my bipolar and bouts of mania, but it’s also just me. So, when I do nap I know my body is having a rough time. Instead, say something like: It must be rough having to take time out of your day to nap. (OR) Napping is necessary when you are struggling with chronic illness. I’m glad you can take some time to sleep. 
If only I could nap like a cat.
  • Think Positive Oy. I get people wanting to be positive. I even get people wanting to encourage other people to be positive. I do it. Positivity and having that kind of mind frame can be beneficial to your overall mindset and health. However, having a chronic illness is difficult. If someone is not smiling 24/7 there could be many reasons. The permanency of chronic illness is not something you ever get used to. While it may have been something that began gradually, it feels like you woke up one day never to feel well again. Think about that. Having the flu forever? Sucks right? No one wants to be ill or in permanent, intractable pain. We want to feel good. We want to do everything we did before we got sick. We want to be healthy and pain-free. Instead: Maybe talk to them. Have them tell you what is going on in their lives. How they are handling their chronic illness. If they are truly depressed, they might benefit from talking to a professional about their chronic illness. 
  • Be patient, it will get better. This goes along with “Think Positive.” People seem to forget the chronic; in “chronic illness”. It doesn’t get better. In fact, it’s likely to get worse. This isn’t something where you can convalesce for a few weeks and be as good as new. And the truth is, we’re probably more patient than many out there because we have to be patient for so many things. Patient in doctor’s offices, patient while waiting for a diagnosis (sometimes it takes years to get a diagnosis), and patient with family friends who don’t believe us. What you should say instead? It’s difficult being patient all the time for so long. I’m sorry you have to struggle with this.
Exactly. If all else fails being positive, stab it.
  • If you’re still doing ________, you should stop. Look, if you smoke and have asthma, sure. You should probably stop smoking. I mean really think about it and stop. If you’re going through a 12-pack of Coke every few days and you are a diabetic, you should probably stop. However, not everything has a direct correlation with a person’s chronic illness or pain. Telling a person o cut down their soda consumption will probably not affect their Lupus or R.A. Telling someone they should curtail their alcohol use, while probably overall a healthy idea, will probably not do anything to change the outcome of someone with degenerative disc disease. Truthfully, in all these examples the person is the one in control of their body and it’s their choice of what they want to do. Instead of saying this, my advice would be to: simply encourage a healthy lifestyle. That benefits everyone, without sounding judgmental over a person’s life choices. When you target bad habits (or what you may perceive as bad habits) you only alienate that individual and they are likely to continue what they are doing out of spite. 

You have anxiety, see a therapist. While seeing a therapist may be beneficial for many, if you don’t know the nature of someone’s anxiety you can’t just tell them to see a therapist as though that will be the magical fix. Some have seen a therapist and have had a bad experience. Other’s may benefit from things like meditation instead of therapy or other, anxiety-relieving techniques. Some people may not have the insurance to be able to afford therapy which could be quite expensive. My advice: Just don’t tell someone they need to see a therapist unless you truly know their issues surrounding their anxiety. 

I hope you feel better soon. -facepalm- Say this with me, “chronic” illness. Again, sarcasm aside, chronic is the keyword here. Chronic as defined in the dictionary: (adj.) (of an illness) persisting for a long time or constantly recurring. (Also) (of a problem) long-lasting and difficult to eradicate. You may have days where you feel pretty good, but it isn’t a permanent state. Instead of saying this, try something like: I can’t understand exactly how you are feeling. I do know it has to be difficult dealing with something long-term like you are and if there is anything I can do to help, tell me. 

Everyone has limitations. This one is just yours. There are so many things wrong with this one I just don’t know where to begin. It makes it sound like you should be able to put it to the side and carry on as usual. Chronic illness isn’t something you can put in a box and just ignore. The symptoms can be all-consuming, felt every day and can make life very difficult. Making it sound like this is just your cross to bear is wrong. As though you need to suffer in silence- it’s just wrong. Instead of this try saying: Nothing. Just avoid it. It’ll be better for you and the person receiving it. If you seriously have to comment on this I would say: I will support you however you need. I know you can do this. 

I have that too (insert chronic illness or symptoms), so, I understand. (Or) I have _____ too, but it doesn’t affect me as it does you. Maybe you’re on the wrong meds. I am not you and you are not me. that’s a glorious thing. We’re individuals- from the way we think to how our bodies work and respond to medication. So, what works for you may not work for me and vice-versa. You can’t compare your experience with chronic illness to anyone else’s. Others may have the same symptoms but their experience and how it affects them may be quite different. Instead try saying: I’m sorry you are struggling with _____. I may have the same thing but I know it can affect others differently. Do you want to talk about it? 

Do you really need that disability placard? (Or license plate) oy… Yes, actually I do. And yes, there are thousands, if not millions of people with unseen disabilities, that need a disability placard. There are so many disabilities that are not visible to the naked eye. People who suffer from PTSD who need to get in and out of the store quickly to avoid a trigger. People with severe anxiety who need it for the same reason. There are others with chronic illnesses which find walking a great distance exhausting. There are many reasons why people may need a disability placard or license plate, not just because you have a physical disability. Instead, try saying this: Nothing. No one should be judged for having this placard. It’s not easy to acquire so you should keep the judgment to yourself. 

Stop Blaming Yourself

Oy. If I had a dollar for every time, I blamed myself for my illnesses and for passing some of them along to my children I’d be rich. No lie. I think we all do it at some point and some of do it more than others but it’s definitely not healthy. I’m a strong believer in your mind and body believing what you think and if you are actively blaming yourself, I think that your mind will eventually believe it and that is not good. You are not responsible for an illness that was never your fault to begin with.

  • Compassion: Yes, you heard me correctly. You need to have a little compassion for yourself. It might be easy to feel compassion for others but, somewhere along the line you stopped feeling it for yourself. Take a deep breath inward and remember you are human too. Remember that your illness isn’t something you asked for and that you deserve compassion from the person that matters most, yourself.
  • Mindfulness: There’s recently been an influx of talk about mindfulness. In the media, commercials, everyone is talking about it and they should be. I believe we become better people when adopt a mindful attitude, especially with ourselves. How do we adopt mindfulness? I think slowing down is important. Our days can be cluttered with appointments, kids, significant other and work that we forget about ourselves. Being grateful and giving back to others is important too. Sometimes we get so wrapped up in how bad our illness is that we forget about what we have in our life that makes it worth living. We forget about the things that make us happy and it’s important to stop, take a breath and remember those things that give us purpose. Contributing back to the community can help us be mindful of what we have. Volunteering is a great way to help your mindfulness activity and you can volunteer just about anywhere doing anything, even from home.
  • Meditation: This works hand in hand with mindfulness. Quieting your mind, which can be a very busy place, and where you can adopt a whole slew of self-loathing and contempt for your illness, can be quieted and pushed away by practicing meditation. It can be small at first. No one goes into meditation for long periods of time without some serious training! My favourite methods of meditation that I have taught my children is the candle technique, where you look at a candle and watch the flicker of the fame and just try to focus on it. I don’t believe in clearing the mind because we are always going to have something in here. It’s human nature to think and we don’t have an on-off switch. I think if you find yourself thinking about the same things over and over again pick one and try to figure out in your head why it’s so important. Music meditation is something I do. Listening to music is a favourite hobby of mine and there’s a running joke here that every song is my favourite song because I say it so often. Listen to your favourite music and try and relax. I wouldn’t listen to Ozzy Osbourne or Marilyn Manson here. Great music but a little too much for this activity. Listen to the music and meditate on your day or your illness if that is what is predominantly on your mind. Try to figure out why these thoughts are bothering you. I also incorporate a mantra. Write down a positive mantra, and you can find them online or make up one on your own that helps you feel positive about yourself and helps you to feel strong. Repeat this mantra when you are meditating. When you say things enough times, you begin to believe them. Believe that you are not at fault for your illness. No one asked to be sick.

Some people recommend exercise. I don’t have it in my list because not everyone can, but- if you can do some activity that helps you relax, where you can tell yourself that mantra you have chosen, go for it. Yoga is something that is beneficial and that you can do low impact and even from bed. Seriously. I have found some yoga exercises and sequences that you can do right from your bed. If you just can’t, find something else. Colouring or doing some kind of artistic craft can be very beneficial for your mind and soul and I believe you can make just about any calming activity into a meditation period by just being at peace, saying that mantra and relaxing yourself in your art as much as you can. If you get diverted by other thoughts try to figure out why those interrupted the moment. Then, get back on track.

My final word: Don’t blame yourself for something that was never your fault to begin with. Illness is never something anyone should be saddled with guilt over. Especially long-term illness. It just is. You can think of it as fate if you want, the cards you were dealt, but it is not your fault. Don’t blame yourself.

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You Can Still Do Everything Right (And Guess What?) Still Be Sick

Hello, my intrepid warriors! I’m back for another raw, yet inspiring post. I know many of you out there have been sick for years. Some of you darlings have been struggling your entire life with your autoimmune disorders and chronic pain (I don’t know how you do it!), while the rest of us run the gamut along the timeline of how long we’ve been struggling. I’ve been dealing with my chronic illness for 8 years now. It took me about 4 just to get a diagnosis for three of them and I’m still trying to get the diagnosis for Crohn’s, even though they are treating it like Crohn’s, say it acts like Crohn’s, and it’s unlikely it is anything other than Crohn’s (wait for it) yet they cannot be completely sure that it’s not something else.

In the meantime, we try to do everything right to help ourselves through our illness. We research our illness like the devil so that we eventually become more informed than any doctor, frankly, I think many of us deserve honorary degrees given the depth of knowledge we accumulate. But we don’t just research. Let’s face it even when you are investigating outside WebMD where you are looking at possible death for most of your symptoms (mostly kidding), it is exhausting dealing with the volume of information for out there and so many differing opinions on what those symptoms could mean. You balance this out and tap into how your body works and how those symptoms behave inside of you and what it may mean. We might as well become Sherlock Holmes the way we are trying to connect all the dots and backtrack to the beginning source of all our problems. I think every one of us believes it had to have all started with one thing. Like something in our lives or body had to catalyze all our illnesses and health problems. That it couldn’t just be a random coincidence that at age 36 (just a random age I’m throwing out there) everything suddenly just tanked. I know I am one of those people. I sit there and wonder for hours, like that cat meme where it’s all the figures as he’s thinking how to make the jump? Yeah, that’s me thinking about how this all started. It had to originate with something.

Next on our list of things we try to do right, is keeping ourselves healthy. Many of us endeavour to eat healthy, exercise and even meditate in hopes that one out of the three will lift us from the depths of our misery. But does it? For most of us, the answer is a resounding no. Despite our best attempts at losing weight to make the pain better, eating healthier for various reasons from simply basic health reasons, to boosting our immune system, to even autoimmune guided diets. There are so many reasons people find themselves perusing diets thinking it will help them and it’s devastating when it doesn’t help. Some do reap some benefits and I am not here to tell you not to look for a diet that might help you. Diets can help you even if they don’t help your autoimmune illness. If you are overweight it can help your overall health to lose weight and it can help arthritis and other reasons that some might have chronic pain, to lose excess weight. But if you are going into things looking for a way to alleviate your chronic illness you simply may not find the answer you are looking for. And it’s very frustrating you can try and try to lose weight, be healthy, exercise if you are able and still not feel once ounce better. And you begin to wonder to what end is this all for.

Oh! How about sleep? Chronic illness and chronic pain are notorious for robbing our lives of sleep. We look for ways to sneak more sleep into our lives any way we can and sometimes we can and a lot of times we can’t and even if we can, it may never ultimately help the situation. You can get the 8 hours of sleep and still find yourself smack dab in the middle of a flare. Or you can sleep 14 hours or longer with naps, or be the reverse like me, where sleep is constantly elusive and then you read things like “If you don’t get your sleep, your overall length of life is shortened.” Holy crap on a cracker man! As if I don’t have enough to worry about, I am going to die earlier than expected just because I don’t sleep! That is a lot of stress. And stress, as we all know, can contribute to lack of sleep. And if you have OCD like me, you end up stressing about the stress you are feeling because you can’t sleep, which plunges you further into not sleeping and yeah. It’s a mess. It makes you feel like you can’t do anything right when you are trying so very hard to do everything right.

You can still do everything right, or try to, and suffer from the plague of symptoms that is your chronic illness. It isn’t you, it simply is and you need to remember that some days it’s just out of your hands. You can continue to do what you do to try and alleviate symptoms but forgive yourself and your body if it fails. I always try to stress that when I write is forgiving your body. Your body is ultimately no longer in control. The chronic illness/autoimmune disorder is riding at the helm and your body is like hostage-taking orders. So, if you wake up feeling like crap and all you want to do is sleep and you can take the day off, or maybe take a nap sometime during the day, go for it. Indulge and do what is needed to help yourself through the symptoms. It’s okay.

Love this picture. The cat’s expression encapsulates how I feel sometimes!

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It’s Okay If You’re Chronic Illness Wins Today

Battling chronic illness is a 24/7 job. You never get a break from it. You try to do everything right; you do to your doctors, you take the medicine they give you; you do the therapy they want you to do, you exercise (if you can), eat healthy, get enough sleep, but some days try as you might, chronic illness wins. You wake up and you know it’s going to be a horrible day. You can feel it in every atom of your body and you dread it. Why? You do what you are supposed to. Why does your body, who should be on your side, betray you in such an intimate way? Because it isn’t your body and its chronic illness. Some days are just more difficult for your body to fight it and you have to allow your body the time to heal and get over the bump. 

This doesn’t mean that you have to like it. You can be angry and throw things. You can curse and shake your fists at the sky and say, “Why me?” However, in the long run this does nothing to help the situation. Graceful acceptance of your body’s failings will provide more healing than fighting against it. There’s less energy wasted in acceptance, and there is a peace that fills you eventually when you realize and accept that some things are beyond your control. And as much as you’d like to have control over your own body, the chronic illness that inhabits it has more control over what is happening than you do. You have to let it go. You have to look for control elsewhere, in things like how you are taking care of your body, and what you are doing to ease your body when you are having a bad day, rather than being angry that this is happening to you.

Try and be grateful for the gifts that your illness has unknowingly given to you. For example, for me, chronic illness has given me the ability to do what I love, which is write, full time. It has allowed me to be home with my children and be there for them through a considerable portion of their lives to help them when they have needed me. And now, they help me a great deal with doctor’s visits and shuttling me around when I need to go somewhere because I can’t drive. So, while chronic illness has stolen much from my life, I have also reaped some benefits of which I am grateful for and would not have were I not sick. 

Not everyone can be home with their kids. It does mean that most of the time we’ve been a one income family, but I have also made up for it in other ways. I meal plan, and make everything from scratch at home. From broth to yogurt when I am feeling up to it and have enough supplies. Sometimes I swear, I can’t keep enough mason jars in the house. I don’t know where they go off to. But I like doing the homesteading on a smaller scale because I don’t have the room to do it on a larger scale yet I’m practicing for when we go to Wisconsin and have our farm. Big dreams!

Closing off here with a reminder that you do what you can, you appreciate your body for what it gives you, you forgive your body for its’ failings and you continue to have a good life. Sometimes chronic illness wins, but it’s only one day out of 365 and even it’s more than that the good days still outweigh the bad in quality. You have to look for the positive in the everything. 

I loved this image and the message it conveys. Positivity is not necessarily natural in everyone. It’s not for me. You have to train yourself to see the positive in situations. It’s not easy but as you train yourself it begins to get easier and you begin to think, “Why didn’t I see this before?”

Note from Author:

If you like what you are reading, please click the PayPal button and donate what you can. There is no amount too small and it’s rough trying to fight for disability, having medical bills to pay, kids in college and so on. I am trying to live my dream and my passion by doing what I love, and it’s the only thing I can do because I can’t work outside the home. So, if you can help it would make a world of difference in my life. Thank you from the bottom of my heart.

Forging New Meanings of the Word: Disability

Throughout history, there have been a lot of misconceptions and negative connotations associated with the word disability. To the point where many outside the disability community, have tried to help those within the disability community and began to say things like “there is no Dis in our abilities,” as a way to show people that just because some may have a physical or mental impairment, doesn’t mean they can’t accomplish the same things as someone without them. Some of those people are very driven in life because of those impairments and it is the catalyst that propels them forward in life. They may have to work twice as hard as their -abled counterparts but it’s worth it for the reward in the end. The proof shows that they are just as capable of doing things. The problem with this, in my opinion, is that it’s not the word that is the issue but the negativity of other people and their perception of the word that changes how that word is interpreted by others. Words are just words that are given their meaning by people and we can change that meaning and how they are perceived. We can also allow people to use whatever words they want to define themselves. It seems only right if they are comfortable with the meaning and connotation of the word. 

As a person with a disability, who is only recently disabled within the last few years and has not had to live with a disability all my life, disability doesn’t have the same connotation to me. It means I have limitations, and it means I can’t do the same things I used to, but it doesn’t define me and it certainly doesn’t limit me even though it may limit what I can physically. It doesn’t limit me mentally; it doesn’t limit my imagination and sometimes I can even find ways around the physical limitations to do what I what to do. It just means thinking out of the box which goes to that creativity, which I have a lot of. Now, I understand that some people who live with a disability all their life view it differently. The very nature of the word itself DIS-able has this negative connotation attached to it whereby you are making this insinuation that you can’t do something because you have this flaw. It’s ridiculous. You may not be able to do one thing, but you may be very capable of doing other things. 

Some people don’t like using the word disabled and that’s ok, but others are perfectly comfortable with it. Some people prefer cripple, others don’t. Some people prefer different words to identify themselves and that is okay too. It shouldn’t be up to anyone else to say how we should identify ourselves, or worse, tell us what is right or wrong about how we identify ourselves. This is such a personal decision. Not even under the guise of trying to make things better or more inclusive for the disability community because that is unfair and not we asked for. Words become negative when they are used in negative ways. I don’t believe that words are inherently bad. I think if people in the disability community are okay with words like disable and cripple, then they should be allowed to use them. This belongs to them. 

I believe people in the -able community should be sensitive and respectful of how those in the disabled community want to be called. It doesn’t take that long to ask someone how they identify or what they prefer to be called. Respectfully, I think, because they are the ones with the disability. They are the ones who have been navigating this in their life for however long and if anyone gets to dictate how that makes them feel, it should be them. I know at the beginning I was very much against being called disabled and forget about crippled. That might as well be a curse word. I’m still not okay with that one, but disabled doesn’t mean the same 

COVID Sucks & Some Tips to Fight It

On December 16th, I was diagnosed with COVID-19. Almost 20 days later and I’m still feeling the symptoms of the illness. I have not gone to get tested yet because up until a week ago I was still running a temperature of 101.5. I figure if my eldest, who was positive with no symptoms only just now tested negative after two weeks, I’m likely not negative yet having active symptoms up until a week ago although I know you can test positive up to 3 months without having symptoms. Since I do not work outside my house, there’s no real imperative reason to get tested although inquiring minds would like to know my status. Such as my parents, who both have tested positive and my father who spent some time in the hospital with COVID-pneumonia. Thankfully, he was treated and released. We could not have asked for a better outcome with that for him, given his age of 84 and health issues. I decided that the Croatian people are strong.
Having survived COVID-19 should make me happy and in many ways I am happy. I am also profoundly grateful that nothing went wrong and that I managed to fight the illness at home and not have to go to the hospital. Two rounds of antibiotics for bronchitis that threatened to become pneumonia and a relentless fever as well as the fatigue, that even now cripples me, and yet I managed to fight it at home. It wasn’t easy and at times it was downright scary. The headaches, nausea, the coughing that scared me and the fever that left me freezing all night were things that I debated on going to the hospital for. Instead, I chose to battle it at home more concerned that the hospital was a worse place than my bed and that I would be taking a much-needed bed from someone who really and truly needed it. I purchased a pulse oximeter on the recommendation of my doctor and kept track of my oxygen. Had it dropped too low, I would have taken myself to the hospital, but it never did. The lowest it went was 92 and that was when I used my asthma inhaler and my diffuser with eucalyptus and peppermint essential oil to help with my breathing. I was lucky that it was enough to help.
However, I am still dealing with the repercussions of having COVID. I am still dealing with the symptoms and like everyone else touched by this disease, I do not know the long-term effects, especially on my other health issues/autoimmune disorders. I am worried about the long-term effects and what it might be doing to my body that I do not yet know about. The main thing I am dealing with at the moment is epic fatigue. I have dealt with fatigue before COVID, because of my autoimmune disorders, but this fatigue leaves them all in the dust. I sleep late, I nap all the time and I go to sleep early. I feel like I can’t get anything done because I’m sleepy all the time and my brain is fuzzy. It sucks. Big time.


If you get COVID here are my 5 Tips:


Stay Hydrated: It’s so important to keep drinking water, herbal teas, ginger-ale or Gatorade or Vitamin Water. Being sick can naturally wreak some havoc on our bodies and then add symptoms like a fever and cough and these can rob the body of nutrients you need to get better. Our body is made of 60% water. It’s only natural to want to replenish that water and electrolytes if you have other symptoms like diarrhoea or nausea and vomiting. Hydration is important in keeping our core temperature balanced and being dehydrated can make a fever worse. Remember, water can come from fruits, soups, teas and popsicles if you aren’t feeling like drinking a whole glass of water. Just getting a little bit in is better than nothing at all.


Pain medication/fever reducer: Make sure you have this on hand right next to you at all times and are taking it as directed, every 4hrs or so. My fever was notorious for disappearing during the day and raging at night. We researched why and it has to do with the amount of cortisol in your body that elevates at night and causes the white blood count to rise. So the illness is being fought by the white blood cells at night which causes you to run a temperature and feel miserable. I was like this straight for a week, just freezing at night and going crazy. Tylenol is your best bet, there is something in Advil and Motrin they advise against taking while you have COVID.


Ice packs: These are a life savour for both the headaches of COVID and the reducing fever. I used about three at a time. One for my head and one under my neck and back to help with the fever. It is not pleasant when you are freezing with 101.5, but it helps bring the fever down in combination with the Tylenol and ultimately you end up sleeping better. Keep several around if you can or use some old veggie bags. They will help in a pinch and you can replace them.


Thermometer: You need to take your temperature regularly because every time you run a fever you need to continue to self-isolate. Once you have not run a temperature for 24-36 hrs., you are considered no longer infectious and even if you are still exhibiting symptoms, you can go out with a face mask. So, please take your temperature regularly so that you can both treat yourself, and monitor your progress.


Vitamin C, Turmeric and Ginger: Turmeric and ginger have incredible anti-inflammatory properties and are high in anti-oxidants. Ginger can help fight off colds and relieves stomach related issues. Vitamin C supports our immune cells and in combination with a diet rich in fresh fruit and veggies will protect the body from foreign invasions.

We’ve Been Infiltrated

Five days ago, my youngest started to not feel well. She, like my oldest and myself has an autoimmune disorder. Hers is newly diagnosed and while she hasn’t had too many symptoms from it [lupus] she also has fibromyalgia and scoliosis, which can leave her feeling kind of crummy and achy. Her symptoms were vague and we chalked them up to chronic illness and being run down. However, on the third day when she came home from work and told me that the previous night, she’d been running a temperature, my heart seized with fear and I knew it was more than just a chronic illness flare up in combination with her symptoms. She went to the clinic and tested positive for COVID-19.

She has been quarantined to her room. Her sister, whom she shares tht room with, has been moved to my bedroom during the day and on the couch at night when I try to sleep in my bedroom at night. It’s been complicated because during all this we’ve had other issues going on.

We have an older dog who just recently tore his ACL on his back, rear hind leg and then a few days later partially tore the right leg. We’ve been acting as a trauma unit and a day care center for our dog and trying to manage keeping him and our puppy separated, which has not been an easy task. By the way, if any of my lovely readers know of any ingenious ways to keep an 8-month-old puppy busy while in quarantine, while having to be separated from an injured dog, and keeping said injured dog busy and entertained while he can’t move around, I’m all ears! This has been brutal.

I feel like when my husband goes on deployment that everything that can go wrong does go wrong and that this particular deployment has been the king of all deployments when it comes to things breaking, falling apart, people getting sick and things going wrong. I knew in my head with 3 working children that if someone were to be exposed to COVID at work, it was only a matter of time before one of my kids got sick. And should they get sick, then my chances of getting sick is exponentially higher. I don’t have a lot of places to hide in my house.

It’s been a day since I started writing this and I’ve tested positive. No surprise. My head hurts, my body hurts, and I’m exhausted on top of the normal exhaustion I feel as a chronic illness patient. I can’t even describe it. And the head pain. Like the worst migraine ever that just won’t go away and only sleep relieves it. My asthma has been wonky and I’ve been coughing but so far, aside from a little wheezing, lungs are clear on x-ray. Now, it’s just a matter of time and patience in the healing department and worry that I’m going to have some long-term effects because of my chronic illness. You keeping hearing about these “long-haulers” and I worry that this illness will leave an impression on me. I worry because of my vulnerability. Chronic illness has already scarred my body in so many ways; gouged out deep marks leaving me to never be the same again. It’s a heavy burden and because there’s so little that we know about COVID, I can’t help but worry about my future. What I do know, is when that vaccine comes out, I’m going to be first in line so there’s no chance of getting this again. 

To those of you out there still fighting the fight, be vigilant! Wear your mask, wash your hands, protect your love ones. But if you do get sick don’t despair. My daughter felt very guilty when I got sick, as though it was her fault. Once this virus infiltrates your household it’s game-over. Everyone is exposed. Not everyone may succumb to getting sick, but everyone is exposed. This virus is everywhere and you can’t predict who you might come into contact with, where. It’s no one’s fault. It’s just the virus’ fault. Be safe.

Winter Solstice Rituals

This is a picture of a forested area in Northern Wisconsin, in Winter, covered in snow with the sunlight coming through the trees.
My happy place would be here: Wisconsin in Winter.

Breaking away from the usual posts to share with you some Winter Solstice Rituals I want to try out this year. I used to be more a more avid practitioner of my until I lost my focus and chronic illness and pain set in and made things doubly worse. Then, I began noticing things in my life. I am a huge believer in synchronicity and I saw enough things that I realised that not only did I need to bring Wicca back into my life, but that the calling had been from a Dark Goddess herself- Hekate.

The Dark Goddess is present in the darkest times of our lives and moments in our lives that come to an end. These times are often known as the “dark moon,” phases of our lives; a time when something comes to an end, yet there’s a traditional period before renewal, revival or new beginning taking place. All of which I am very much in the midst of in many places of my life at the moment. During these times is when Hekate encourages me to see things as they really are despite the severity and rawness of it all or even how painful it may be so that I can move past it with peace in my heart. Which brings me to the heart of this post, sharing these Six Rituals I plan to practice over the last few weeks until the Solstice.

1.) To Burn is to Cleanse

Burn a list of things to release. Release to rise- like rising out of the ashes. What is it that you need to let go of to expand to your truest self? Is it fear, stress, worry, regret? An old grudge you’ve been harbouring that you need to let go of so that relationship can grow and evolve? It really can be anything that is preventing you from moving forward, letting go, or just growing as a person. The solstice, among other things, is about renewal. Once you have the list, read it aloud. Take a moment to genuinely say goodbye to each item, and toss it in the bale-fire of your choice.

2.) OooOoo Let the Light Shine In

What does the light mean to you? Think about all the ways the light makes you feel and how you feel when you are illuminated. How does it feel when you are outside on a gorgeous day, your face tipped skyward, bathed in the warm glow of the sun? How does the radiance of the people in your life affect you? Do you tell them and does anyone remind you of your radiance?

3.) That old adage, ‘We are what we eat.’

Our bodies need to be grounded and our bodies need to eat. So it only makes sense to sustain our bodies with food that is nourishing and that will ground us. Therefore, it is the perfect time to binge on a platter of seasonal winter foods that our bodies will thank us for. Some favourites would be Belgian endive, broccoli rapini, carrots, fennel, kumquat, persimmon, radicchio, winter squash, cranberries, raspberries, pomegranates, potatoes, onions, leeks and parsnips. Winter calls for root veggies, perfect for thick stews and soup! Add some cinnamon to your dessert for its anti-inflammatory properties and anti-oxidants, add ginger or Tumeric to boost immunity.

4.) Bonfires and Yule Logs!

Enjoy a bonfire with friends and add a Yule log to make it special. If you can’t have a bonfire, use your summer fire pit or even your fire -OR- if you can do it safely, use an abalone shell, offering bowl or just a plain bowl and use a cinnamon stick for your perfect “mini” log.

Bonfire
Fire-pit Fire
Fireplace
Abalone Shell

5.) Honouring your Tree

Give thanks to your Holiday tree. It’s a small gesture to extend another living thing if you do still purchase a live tree. This one of the rituals I won’t be doing because I haven’t purchased a living tree in many years because of my allergies. But if you do it is something you can do to honour the life that has been cut short so you can have a pretty tree to decorate for the holidays. And it’s not a judgment on you. It’s teaching you to be respectful to nature and to thank her for the bounty of what she has given every year. Just taking a moment to do this creates energy that is given back to the earth. It’s a beautiful ritual to honour its’ sacrifice and presence. Have some apple cider or spiced red wine- (the apple cider can be spiced too if you like and a glass reserved to drink for yourself.) Sprinkle the branches and the trunk with the cider or the wine while taking a moment to give thanks to nature for for filling your home with the soothing scent and festive vibes. Decorate your tree with ornaments from the heart that make you smile and sip your drink.

6.) Give Back

This is the most important of all. The holiday season bombards people with the commercialised nature of Christmas. For many people it reminds them of what they don’t have; the scarcity of everything. There are others that are reminded of loss and pain. If you are one of the lucky ones that find yourself with abundance, whether it be money, or loved ones, joy or food, and are blessed by your circumstance and want to share that good fortune with others, there are many ways to give back. Purchasing gift cards for food at the grocery store can be donated at local community shelters. They can also be donated to school where often times children are too ashamed to come forward and say that suffering and not getting enough to eat. You can share your time at local soup kitchens that will always accept your help if you have the time. Performing random acts of kindness for people you don’t know, if you can’t volunteer but want to help in some way is something you can do. Keeping in touch with your friends, or neighbours is another thing you can do. People get lonely this time of year during the course of a normal year and this is a very abnormal year. Check on people whom you wouldn’t normally check in on. Drop in on neighbours, practicing social distance and just say “Hello, you were thinking of them.” You’d be surprised what a wellness check like that can do for someone’s moral. Think about how you can use your radiance to illuminate someone else’s darkness and remind them that there is always light to be found.

Remember, be the light. These rituals are not meant to be a once-a-year thing. Light & Dark will ebb and flow during the cycle of each year like good times and bad. These can be drawn on to eradicate darkness and invite the light back into your life, through any transition.

Scene from Elf movie where Buddy sees Santa in the store. "Santaaa! Oh My God!!"
Elf is one of my Favourite Christmas Movies

Holding Down the Fort

Having chronic illness/chronic pain & mental illness is difficult on any normal given day. Add the stress of trying to hold the fort down while your spouse is thousands of miles away and everything is compounded. It’s never the big things that people think it might be, but the little things, the everyday things, that build up that end up tipping the scales. It’s frustrating that what can be normal stressors for most people can be overwhelming for me.
Planning a certain thing for dinner that I couldn’t end up making because I used up all my spoons cleaning, that I really didn’t anticipate doing but my body just gave out and now my plans are wrecked and I’m irrationally angry and upset about it. My kids not doing their chores the way they are supposed to, like loading up the dishes in the dishwasher so my favourite coffee mug is not clean for breakfast and my OCD rears it’s ugly head so I have a meltdown crying because now I can’t have coffee. Then, the backyard fence is falling apart; the new stove I purchased couldn’t be installed because the gas line was prehistoric and needed to be updated, come to find out our furnace gas line had to be updated too, all of this costing money we didn’t anticipate. Renovations on the house I had planned took much longer than expected- almost two weeks longer and the cleanup afterwards left me recovering for another two weeks. I had excitedly plotted out a string of projects for the house to get done while the husband was deployed, but after that first renovation project left the house demolished, I couldn’t do anymore. The idea of it stressed me out so much I couldn’t even think about it.
It wasn’t just the renovations; it was that I was very much at a disadvantage being someone who didn’t understand the trade or how it worked and not knowing if I was being taken advantage of. There is nothing more stressful, nothing that blows up my anxiety more, than situations like my stove where I have to have a serviceman come to investigate my gas line, having to rely on faith that he is telling me the truth and that I need to update the one behind the stove and the furnace or he cannot install my stove per Texas laws. Do I know Texas law regarding gas safety? Nope. It seems like the guy is trying to protect me. He even replaces the one behind my dryer for free because my husband is in the military and so is his older son and his younger son is about to go in too. But when I tell him that Home Depot forgot to order me a hood for my stove, he tells me that it’s no problem and he has plenty; he can install it no problem all he has to do is take measurements. That was almost 2 weeks ago and I’ve called and haven’t heard back from him. But it’s difficult because of my social anxiety that not even my husband understands the depths of- that even making call-backs for repairs and services can sometimes take hours or days of pre-work just so I don’t stumble over words. Then, after that, I’m drained.
It becomes much more difficult as children grow older, and still live in the home, to force them to be a family unit and want to care for one another and understand one another. The twenty-something-year-old’s, while progressive and doing much to change the world at the moment are still caught between childhood and independence and rebellion. Sisters, especially, (though I only speak from observation) want to be treated independently after a certain age and not like the younger sister next-in-line, who can’t think for herself. We’re a close family, in a small house, with two pairs of siblings sharing a room each. It’s difficult for them to get privacy. We also all deal with a variety of mental health issues, which makes it uniquely difficult to see things clearly all the time and appear like people deliberately don’t care, when that isn’t it at all. We are all just people who have a unique way of approaching various situations that may clash with one another. But I think if we can focus on the love we have for one another, we can get through anything.