Myths & Misconceptions about UCTD

One of my diagnoses is undifferentiated connective tissue disease (UCTD) and while according to my new rheumatologist my disease seems to be more-or-less in remissions (still some mild symptoms) I wanted to talk about some misconceptions about UCTD that many people – patients, doctors, family members, allied healthcare professionals, etc. have about it.

2016 year of diagnosis – 2022 remission
  1. It’s a diagnosis given when they don’t know what’s wrong with you.
    Not exactly, technically UCTD is its own diagnosis. It is given when someone has some symptoms of a specified connective tissue disease (like lupus/SLE or rheumatoid arthritis/RA) but doesn’t not have enough symptoms to warrant those diagnoses. Some of the confusion here might be the word “undifferentiated” which is vague at best, but isn’t meant to be that vague. There is also no diagnostic criteria for UCTD, meaning that differential diagnosis is used (the doctor doesn’t have a better explanation and uses a judgment call)
  2. It’s the same as MCTD.
    Mixed Connective Tissue Disease is different in that in MCTD there are symptoms of several different connective tissue diseases present. This doesn’t occur in UCTD, where there are some symptoms of a specific connective tissue disease present.
  3. The symptoms aren’t that bad.
    It depends on the course of the disease of course. The most common symptoms are joint pain and a positive ANA. Other common symptoms include arthritis, Raynaud’s phenomenon, rashes, alopecia, oral ulcers, etc. Again, not enough would be present to give an SLE or RA diagnosis for example. Most of these symptoms are not that fun. The good thing is that there is usually no organ involvement – the kidney, liver, lungs and brain are usually fine.
  4. It will turn into a connective tissue disease like SLE or RA.
    Actually, probably not. Only about a third of people with UCTD end up with a specified connective tissue disease.
  5. It will drastically affect quality of life.
    Controversial, but part of this is up to you. Here’s what I mean. So as in #4, only about one third of people end up with SLE/RA/etc. What about the other two thirds? Well, about one third remain with relatively mild UCTD. The last third end up in remission. The medications used are much milder than immunosuppressants (which is good!) and lifestyle changes can really affect the course of the illness moving forward. UCTD does not mean we should give up!

I hope this helps clear a few things up! I would love to hear what my fellow UCTD warriors think and if anyone has run into any other misconceptions about it!

Keep making the most of it!

Video: Daily Mindfulness – Long Body Scans

One of the most effective practices I do in order to better cope with physical pain and other sensations of chronic illness is the body scan. The research also supports it being helpful. Interestingly it’s also been used as a meditative practice for hundreds of years (possibly longer) to help cope with physical sensations. While it can be a bit scary for chronic pain/illness warriors to go inside, the benefits can be well worth it. This practice is also great because you can totally do it lying down (as long as you’re not at risk of falling asleep). This versions is half an hour long, so if you’re not quite up to doing it that long yet, check out my meditation channel for the shorter version.

Keep making the most of it!

How I Stay Healthy in the Summer

Love it or hate it, summer comes every year. I personally love the summer. I’ll take heat over cold any day (I grew up in Winnipeg which is hella cold). I find the heat takes a slightly less toll on my body than freezing temperatures. And though I live in Vancouver now, where winter has more rain than snow and extreme colds, the changes in the barometric pressure are never fun for my body either. All that said, I know a ton of people who prefer winter over summer, because they don’t like being hot and/or their illness symptoms worsen in the heat (which I’ll admit when it’s really hot, mine aren’t superb either). Even without illness, we need to prioritize staying healthy in the summer. And though summer is coming to an end, any time left does need us to consider a few things.

I’ll admit that I sometimes take off my hat before taking pictures (especially if I’m going to post them on Instagram).

The first thing I do is dress appropriately. I try to go for outfits that are cooling, regardless of whether I’m working or lazing about. Probably most importantly in how I dress for the summer is always having a hat on (ball cap or brimmed hat) while I’m outside and always having sunglasses. That way I can help prevent heat stroke, symptom flare ups, and my eye health. Also, it requires basically no effort to grab my hat and sunglasses when I go out. I’m always a little shocked when other people aren’t wearing them to be honest.

Second, I put on a lot of sunscreen – and reapply as needed. I typically use SPF50 on my face (it’s built into my moisturizer) and SPF30 on my body. I’d rather use “too much” (because that’s not actually a thing) than not enough. Not to mention skin cancer doesn’t sound fun, and I once read that being sun burnt even once in your life greatly increases your risk of melanoma.

Third, I stay hydrated. I always have a water bottle with me. I always make sure there is a bunch of ice in it as well (it’s also an insulated water bottle which helps). I drink a ton of water while working and even just in my apartment. Constantly drinking water because, well, we know that water has a ton of health benefits, plus dehydration is not going to help me feel physically or mentally well.

Fourth, I try to make sure my sleep is as good as possible. I don’t have A/C currently and it gets hot. So I keep windows open, fan on when necessary – even if that means I have to wear earplugs to bed. I have an east facing bedroom window, and while I do need to invest in some blackout blinds, I often wear a sleep mask to bed so that the light doesn’t wake me up. I also ditch most of the blankets and sleep under just a top sheet to try to keep my body temperature down.

Finally, I still get all my movement in. There is a tendency to want to avoid exercise due to heat (trust me, I know firsthand I’m less inspired to workout when it’s hot). I do still make it a priority. If I go for a walk, it’s earlier in the day or later in the day and I try to stick to the shade. My strength training routine is done with a fan blowing at me (though I’m tempted to invest in a gym membership again just to have a cool workout facility), and I do yoga (also with the fan blowing at me). And while I do vinyasa and yin, I find that yin can be a bit better in the heat because you hold poses longer.

So, that sums up how I stay healthy in the summer. What do you do?

Take care & keep making the most of it!

How to Stay Hydrated in the Summer

Okay, this might seem simple, but sometimes I forget to hydrate enough. Last year I was on an app that had us do a 30 day challenge, part of which was drinking 8 glasses of water a day. I honestly felt so great that whole punch (despite having to pee all the time). Unfortunately, I have not been able to keep up the habit. It’s not that I don’t want to or think it’s important, it’s that for some reason it’s a little harder than I thought it would be (this reminds me that I might do a post on habit forming in the future). What I have noticed for myself is that when I’m working, especially from home, I drink a lot of water. One glass per client, plus probably 2 extra on top of that. So on days where I have 4 clients, that ends up being at least 6 glasses of water. In the office, it’s close to the same, but perhaps a little less. The less I work, the less I drink water…

Always have that water bottle.

Except for when I go for a hike, walk, or to the beach. The summer is my favourite time of year. Yes there are some downsides to the weather being hot, but I do love outdoor activities. And I normally do pretty well at staying hydrated. I always bring a water bottle, though I’ll admit sometimes I should probably bring 2, and it’s always empty by the time I’ve returned home. I’m also always happy to get a glass of water at a restaurant, or buy a bottled water at a convenience store if I’ve run out and need more.

While water is 100% important for every human, I think it’s additionally important for Chronic Pain/Illness Warriors. Research suggests that staying hydrated can improve our joint health and functioning by increasing flexibility and lubrication within the joints (could’ve helped the Tin Man). It also has been shown to remove toxins in the body, and toxins are often the source of inflammation. Less inflammation = less pain. Added benefits are improved mood (because being dehydrated can make us angry, depressed and tense – I’ve definitely experience this before, have you?); and it can aid in weight loss, if you have that goal. We know that the mind and body are connected, so when we feel emotions like sadness, anger, and anxiety we tend to feel more pain. When we feel more pain we get into these states easier (so imagine being dehydrated as well).

Here are some ways I make sure I’m staying hydrated:

  1. I always have a full glass of water within arms reach. As soon as the glass is empty (or low) I fill it up, with some ice cubes and just carry it from room to room with me throughout the day.
  2. I bring a water bottle with me as often as possible. I take it to work, on walks, etc. Again, having it near means I’m more likely to drink it.
  3. I order a glass of water at the restaurant. Even if I’m also ordering another drink. Nothing else really hydrates us, so while I’m happy to have a beer or a soda or coffee, etc. that is really for the flavour, socializing experience, etc. I need to have water for the hydration.

Also, side note PSA, if you have a dog and you’re taking him or her for a walk, please, please bring one of those doggy water bottles for them. If you need to be hydrated, they do too!

Enjoy the rest of your summer and keep making the most of it!

How to Get in More Relaxation as a Spoonie

I’ll admit I’m having a busy summer in that there are a lot of things that I want to do and it’s pulling my time away from a lot of blog writing. Also I do a lot of blog writing. Also I’m not overly impressed with wordpress right now while acknowledging that I have a lot of followers on here, so I was figuring out how to get you all of this relevant and hopefully helpful information in the easiest way possible. This is how I’ve decided to go about it (for the summer at least). Honestly, it’s helping me relax.

Relaxation is actually extremely important when you have a chronic health condition. Tension can lead to more physical pain, increased gastrointestinal issues, and other symptoms of our autoimmune (or any other) conditions. So, I think it’s really important to explore some relaxation ideas. Follow the link for more:

Keep making the most of it!

What Foods are Good for My Mental Health & Chronic Illness?

I was reading an industry magazine put out by my association (British Columbia Association of Clinical Counsellors) and this issue was heavily focused on mental health for chronic illness, which I was obviously excited about. In it there was a 1 page article/ad for a book about BRAIN Foods, or which foods are specifically good for mental health. I noticed some overlap with foods that are good for autoimmune disease as well, so I decided to do a little more research and try to figure out which foods would be good for both. While having this knowledge can definitely help my clients, it is also helpful for myself.

Vegan dark chocolate mousse was my birthday dessert in Costa Rica in May 2019.

Before I get into what I’ve found as overlap (not everything does overlap to be clear, there are a lot of foods that came up for one or the other), I want to state that a lot of this depends on what kind of diet you follow. Someone who does AIP vs. Paleo vs. Keto, etc. will all look at this list and find things they can or cannot eat. What I’ve found works for me is to just cut out foods when I notice they don’t make me feel well. So I don’t eat gluten or dairy or meat (except fish) because those are the main things that bother me. However, knowing what can have more benefits from the list of things I do eat is helpful to know. I also want to say, that I am not perfect, nor do I try to be. I went to my brother’s wedding in another city, and while I did try to eat from my go-to list as often as possible, there were times (like at the wedding itself) where I did indulge in dairy, meat and gluten (I surprisingly didn’t hurt too badly after). I personally find it easier to stick to my diet (or rather, way of eating) if I don’t put pressure on myself to be perfect all the time (when I cook for myself I really do stick to it though).

All that being said, here are the overlap mental health and autoimmune foods I found from several lists and articles:

  • Fruits, such as blueberries, strawberries, blackberries, etc. (basically all the berries) – I love berries
  • Vegetables, such as broccoli, kale, and cauliflower – broccoli is often a staple for me
  • Fish, such as salmon, mackerel, herring and sardines – all of which are high in omega-3s and salmon is my fave
  • Nuts and seeds – sunflower seeds specifically came up on a list and I was like ooh reminds me of playing softball as a kid.
  • Sweet potatoes – literally another staple for me
  • Healthy fats, such as avocados, olive oil and coconut oil – I usually cook with avocado oil and I love avocados
  • Turmeric – my former naturopath recommended turmeric tea, which I find to be a lovely way to have more of it.
  • Green tea – I go through periods where I drink a lot of green tea
  • Dark chocolate – pretty much the only “snack” food on the lists and honestly, I got used to the taste (though I still prefer milk chocolate)
  • Whole grains – again, not something I eat anymore, but it’s definitely a better option than “white bread,” etc.
  • Coffee – I was surprised by this one, and I do love me my morning coffee. I do recommend no coffee after 2pm though as it can drastically affect sleep.

So, while you don’t have to eat everything from this list, it is probably helpful to try to include some of these foods regularly to improve brain functioning, decrease depression (depression is linked to inflammation in the brain much like AI is linked to inflammation in the body), and decrease illness symptoms. It can also be really helpful to practice mindful eating – check out my guided version here.

I love food, so hopefully this also helps you to make the most of it!

3 Ways to Reduce Rumination, Worry, and Attachment to Self Stories

Have you ever found yourself caught up in thoughts about the past? What life was like before your chronic illness/pain? Ruminating over and over about that old life… What about thoughts about the future? Worrying about what will happen to you and how your health will affect you, maybe even getting worse? Perhaps you are also really fused with the idea that you are just a sick person now and that is all your life will be. These are all common thought processes when you have a chronic illness or chronic pain. I’ve certainly dealt with these before. The problem with this dominance of the conceptualized past or future, or the conceptualized self, is that it often takes us away from living right now. It makes life worse. It increases suffering.

Rumination and worry are like the fog. Can you come back to the present?

I remember having the thought that I don’t want to suffer any longer. This was in the fall of 2016. My very recent ex blamed me for all the things that were wrong in the relationship because of WHO I was. What I quickly came to realize was that I was ruminating and worrying and fused with having an autoimmune disease. We didn’t break up because of who I was (trust me there were a lot of other issues that didn’t stem from me at all). However, the dominance of my thought processes wasn’t helping me at all. It was taking me away from the life I wanted to live and away from the person I wanted to be.

The Conceptualized Past & Future
I don’t think that being able to reflect on our pasts or contemplate our futures is inherently problematic. Our brains have evolved to be able to do this. Initially to keep us safe and alive. We just don’t run into as many instances of life-and-death situations anymore. When we excessively focus on the past, or ruminate, we tend to feel overwhelmed and depressed. When we excessively focus on the future, or worry, we tend to feel overwhelmed and anxious. Both anxiety and sadness can increase pain and set of flares for those of us with autoimmune disease, which in turn tends to lead to more sadness and/or anxiety. It’s a vicious cycle.

The Conceptualized Self
We all have stories we tell ourselves about ourselves. Like who we are, where we came from, and why we act the ways we do, essentially why we are the way we are right now. Often being sick or in pain is a large part of this story. The problem with these stories is that while they do contains some objective facts, they are also chalk full of our own subjective interpretations. When we are really fused with these stories about ourselves, we forget that life is constantly changing, most of it is not predictable, and we can also create change for ourselves. And yep, I know this is really hard to grasp when you have a chronic illness.

Why we need to contact the present moment
We we are stuck in the past or future, and when we dwell on our stories about ourselves, we are definitely not experiencing the here-and-now. The benefits of being present are plentiful, including the ability to gain more self-knowledge and self-awareness, enjoying our experiences more, feeling less pain (emotional and physical), and being more flexible in our interpretations of ourselves and of life. I meditate daily because it helps me become more present (and it took me so long to get into a daily routine). I also notice myself being able to come back to the present much faster throughout the day, even when I notice physical pain.

How do we counteract rumination, worry, and attachment to our self stories?

  • Mindfulness – it can be meditation, but really mindfulness means contacting the present moment, being here-and-now. So it can also be yoga, or mindful walking or eating. It can be fully engaging in an activity. It can be noticing your thoughts/feelings/sensations and then coming back to the present by noticing your feet on the floor. It can be many, many things, but it is always: being curious, open and nonjudgmental about your present moment experiencing. Check this out.
  • Noticing Self – the idea that there is a part of us that can step back and notice. Like the sky and the weather. The sky always has room for the weather. Even when the weather is thunderstorms and hurricanes, the sky is not bothered by it because eventually the weather changes. We can use this same part of ourselves, to just step back and watch our experiences without being swept away. It’s a safe place that just notices. This is particularly helpful for attachment to our conceptualized self.
    Check this out.
  • Creating Distance Between Ourselves and Our Thoughts – we can’t stop our minds from thinking, but we can notice when our thoughts are unhelpful and learn to let them pass like leaves on a stream. The more distance we can create, the more psychological flexibility we can have in order to return to the present. Check this out.

I know that was a lot of information! I’m a big believer in seeking help from a mental health professional in your area if you are really struggling with your mental health. Many people with chronic illness, chronic pain, TBI, etc. find it hard to cope on their own. One of the best things I ever did was go to therapy. I learned a lot of skills to help me cope and felt I had nonjudgmental support as I continued down this path we call life. And on that note, keep making the most of it!

Video: Daily Stretches – Toes!

I never even thought about stretching my toes until I needed to! A part of me wonders if I had started stretching them earlier, if that would have prevented my trigger toe (I have no idea if that would have been the case). Regardless, I love stretches, so here are some that were given to me by physiotherapists and chiropractors. Let’s keep making the most of it!

Always seek medical advice from appropriate healthcare professionals and never start a new routine without consulting with your doctor.

How to Use Your Body’s Natural Pain Killers More Effectively.

The other day I was walking into work and there was an older gentleman, probably in his late 70s, looking for the hearing clinic. Honestly, I don’t pay attention to the dozens of businesses in the building, so when he asked I said I wasn’t sure where it was. He ended up not following me into the building. When I went in, I quickly looked at the directory, and then ran back outside and down the street to get him. I went with him to the hearing clinic, before going down to my office. He was very grateful, and I felt good. I also had been in a lot of pain that day (my hip) and I noticed (awhile later) that the pain had drastically reduced. Why did this happen? Because my body released endorphins when I performed an act of kindness.

Endorphins are literally our bodies natural pain killers. We produced around 20 or so different types of endorphins, and they are all released by two parts of our brain – the hypothalamus and the pituitary gland – when we are stressed or in pain. Endorphins bind to our body’s opioid receptors which then gives us some pain relief. Opioid medications basically imitate endorphins when they enter our bodies, also clinging to the opioid receptors. And actually, when we take opioid medications, our body produces few endorphins because it doesn’t think it has to produce as many anymore (part of the reason it is easy to become addicted to opioid medications). Now, you might be saying, if these endorphins are so good, why am I in so much pain? Why would I need pain medications, including opioids, if these endorphins actually worked?

Here’s the thing, endorphins do work pretty well. There is a reason our bodies evolved to have them. Chronic pain is weird though and can affect many areas of our lives, which can increase pain (biopsychosocial approach) that make it more difficult for endorphins to work. Also, when we have chronic pain, we end up doing a lot of things that are the opposite of what would be helpful. We lie in bed all day, we withdraw from others, we become depressed making it hard to laugh for example, we stay inside, etc. Doing a lot of the opposite actually helps to produce more endorphins. Here are some examples of activities and practices that cause our bodies to produce more endorphins naturally:

  • exercise – particularly moderate exercise. I find I always feel good when I work out. There is an uphill walk called the Coquitlam Crunch when I live and I swear it is an endorphin boosting activity (probably why a lot of locals do it). However, if you struggle to exercise, any activity to start will likely get some endorphins going.
  • acupuncture – I get acupuncture at least once a month because it reduces my stress, so it makes sense that it produces endorphins (a lot of people find it helps to reduce pain as well)
  • meditation – I’m a big meditator, if you follow this blog you know that. This is another activity that I always feel good after.
  • Sex – I mean it’s physical activity and an enjoyable activity so it totally makes sense this would produce endorphins.
  • Music – singing, dancing or playing an instrument gets the endorphins going. So, if you’re in the kitchen, blast some tunes and take a few moments to dance! (I love kitchen dancing). Every time I play the piano I feel really good.
  • Laughter – as I mentioned, if you have a low mood this can be difficult, but perhaps turning on a funny movie or calling a friend who always makes you laugh might be helpful. As a therapist, I try to utilize laughter in client sessions as much as possible (and appropriate).
  • Sunshine – yep, getting outside, even if it’s just to sit on your deck or balcony, or sit in a park for awhile. In the winter, investing in a UV light. All of this can boost our natural pain killers.
  • Aromatherapy – particularly scents of lavender and vanilla. I often use lavender in my diffuser, which I always have on when I do telehealth counselling sessions at home. It’s a scent that is meant to help you feel more relaxed, and understanding how this work (endorphins!) is helpful for me at least.
  • Altruism – so my opening story is one about doing a kind act for a stranger. Likewise volunteering (I used to volunteer at a children’s hospital, and then at a crisis lines for kids and teens) also produces endorphins. Honestly, while I love volunteering, I find that even holding the door open for someone feels good. And this is why!
  • Chocolate -it actually contains a type of endorphin within it, which is why it helps to produce more. While I’m not saying you should eat a chocolate bar every day, the occasional chocolatey treat might be a good idea!

Okay, so I’m not saying that doing all of these things will mean you don’t have to take any pain medications anymore. What I am saying is that it can (a) reduce your need for some meds (I went off one from honestly exercising and meditating), or (b) can make you feel even better, while you still take medication. And look, none of this is a guarantee, everyone is different, and there are a lot of factors that affect our pain levels, but I’m always looking for what can help. That way we can all keep making the most of it!

Ways to Determine Acts of Self-Care From Acts of Health Care

First off, the media’s portrayal of what is self-care is VERY different from what mental health care professionals think of as self-care. Self-care in the media is bubble baths and spa days and bottomless brunches. I am not against any of this! In fact it all sounds quite fabulous. Counsellors and therapists such as myself think of self-care more in terms of activities of daily living (ADLs) like getting showered and dress and eating meals, etc. And then there is this weird grey area of overlap. For example, I see meditation as a form of self-care. It’s not an ADL, and the media would categorize it as self-care, and yet it can be extremely beneficial for mental and physical health. So I see things like that really as acts of health care.

Relaxation and meditation.

Here are some activities that I see as health care (that are sometimes categorized as self-care):

  • meditation and mindfulness – contacting the present moment to be here-and-now
  • self-compassion – taking a moment to be kind to yourself through touch or words
  • massage therapy – having a registered massage therapist do deeper work (than just purely going to the “spa”)
  • acupuncture – it has been around around for thousands of years and sessions are usually between 20-45 minutes
  • swimming and other forms of exercise – water therapy, strength, cardio
  • baths – more water therapy!

For all of these, research actually supports that they are important for health and mental health. Mindfulness and self-compassion can release tension in the body, make us feel calm and centred and present. Massages and acupuncture can reduce physical sensations of pain and also create relaxation in the body. Exercise reduces pain and increases strength. Baths, swimming and in general water therapy is supported for pain because of its strength, flexibility, heat and relaxation effects (depending on what you’re doing).

Thinking in terms of how these things will benefit my health, as opposed to just being things to enjoy (I mean, these are all things I do also enjoy) makes me more motivated to do them. It’s funny, because the idea for this topic came to me as I’m having a massage later today (I write these about a week before they’re posted). Getting a massage purely for pleasure hasn’t occurred to me in the longest time. Instead I always consider my massage therapist part of my healthcare team. I’m just like, hey, it’s time to take care of those muscles, especially because I have fibromyalgia and I’ve been neglecting them recently! And honestly, this type of health care is also self-care. I think we can get pulled into all these labels, rather than just going with what we need, regardless of whether it’s real self-care or media self-care or health care or anything else. What will make your mind, body and spirit feel better today? Do that, and keep making the most of it!