Category: Guides

In this post, I share a few tips on how to travel when you have a chronic illness.

This post is for those who are able to travel. I know there are some autoimmune diseases that hinder travel. These include those conditions for some of us with symptoms such as extreme motion sickness. Others may be in wheelchairs (they can travel too, but might need to skip the hiking trails on their next travel adventure) or severely physically unable to do certain things on a trip. The key to travelling when you have a chronic illness is adaptation – you can do things just differently and a little bit more planning. In this post, I share a few tips on how to travel when you have a chronic illness.

Preparation

• First things first, make sure your disease is under control before you travel. It’s hard to think of traveling when you’re in the middle of a flare-up and may have to endure long-haul flights. The whole trip is just that – every little bit. From point A to B.
• INSURANCE. Yep, this point is in capitals because what happened to me when I was travelling to Bali last year, I was so glad I had it. I became a young stroke survivor and travel insurance proved more important than I ever knew.

Planning

• The itinerary. Planning your trip is just like any other trip for the general population, only with a few more considerations. Choosing a destination? Ask yourself if your body reacts better in cold or warm weather. How far will your hotel be from the activities you want to go to? Think logistics in terms of your energy allowance aka “spoons” etc.
• Medications. Travelling in and out so often I’ve found that it’s best to bring medications in their original packaging with a print out copy of prescriptions.  Try and get a contact number to the pharmacist or doctor in case of problems at immigration- some of the pain relief tablets are illegal in some countries without proof.  Always bring more than you need in case you find you need to up the dosage for any of them. Another tip is to pack at least an extra week of medication for just in case. Put some in your hand luggage as well as your check-in luggage (make sure you have a doctor’s signed medication list).
• Doctor’s letter. Make sure to get a doctor’s letter that details your condition and any medications that you’ve packed this will avoid any chance of confiscation by an airport or border security.
• Wheelchair Assistance. I never realized I could ask for wheelchair assistance ahead of time. I can walk unassisted but when I have late flights, it becomes very hard to walk. Given your doctor’s letter, you may be entitled to a wheelchair assistance. My first wheelchair airport experience was amazing and so much easier. Our 1 am flight was horrible but with wheelchair assistance upon arrival at 4am we were able to get through immigration and customs, hassle-free!
• Always inform airline special assistance of your needs, especially on a long haul.  This allows for pre-boarding and bulkhead seating (if available) and it makes so much difference says a fellow Autoimmunee.

Luxury Travel

• I’m not saying you have to book business class or even better yet first class (if you can go for it! lol) but for the general travelling population, we all know that costs you an arm or leg and I don’t think, especially having an autoimmune disease/chronic illness like us, that probably isn’t the price we’re willing to pay (pun intended). But there are ways you can make travel more comfortable without the crazy prices, just a few little additions to pack:
  – Eye Mask. Back in the day, haha ok so not so long ago, remember when aeroplanes used to actually include these in those little packs airlines used to give you when you first boarded? Well, due to cost cuts you gotta remember to bring some yourself and wow it makes sleeping so much easier!
  – Pillow/s. think neck pillows, no explanation needed
  – Noise-cancelling Ear/Headphones. I travel about 10-15 times a year and I only just got noise-cancelling headphones this year. Life-changing stuff. Seated near a crying baby on a long-haul flight? With noise-cancelling headphones, you won’t have to worry about it. I had saved calming music and meditations too, so with my cell phone/mobile on aeroplane mode, I was completely zen.
  – Fluffy Socks. On 10hour+ flights who want to battle swelling feet? You’re right – no one! Especially not those with chronic illness. As soon as I get on a plane, I make the move to swap my travelling shoes for comfy fluffy socks. I would add blankets to the tips but if you ask on the plane, they usually have some.

Conscious decision-making

• This might sound like common sense to some but it needs to be said. Choose things to eat or drink wisely. E.g Avoid raw food,  street market foods and your inflammatory triggers (in my case, limit alcohol consumption to a minimum). Just because you’re on holidays doesn’t mean normal life stops. Don’t make things worse by completely ditching your routine back at home. Be open to new experiences, just be conscious of how some food and drink choices can affect you.
• If you have more stringent dietary requirements, consider bringing premade meals or choose places that have a kitchen where you can cook your own meals while on the trip.

Digital helping hand

• We live in a digital world – take advantage of it! Smartphones and other handheld devices make travel so much easier! And not just for the general traveller, but also for those with chronic illnesses. From searching for gluten-free restaurants in a particular location to enabling you to communicate special needs in a different language (eg Google Translate) using technology is definitely every Autoimmunees’ modern helping hand.

For years I’ve heard of a thing called ‘leaky gut’. The first time I heard it, I imagined a dripping pipe. Little did I know, in a way, I was correct but also so far off from the truth. In this post, I explore the connection between Autoimmune Diseases and Leaky Gut.

What is a Leaky Gut?

Leaky gut, also known as increased intestinal permeability, is a digestive condition in which bacteria and toxins are able to “leak” through the intestinal wall. It can be caused by medications. Antibiotics, steroids or over-the-counter pain relievers like aspirin, can irritate the intestinal lining and damage protective mucus layers. This irritation can start or continue the inflammation cycle that leads to intestinal permeability.

Other causes / factors contributing to leaky gut:

• alcohol
• gluten and GMO wheat
• GMO corn
• intestinal parasites
• stress
• nutrient deficiencies
• toxins and chemicals in foods
• glyphosate (Roundup, an agricultural herbicide, which many farm crops are exposed to)
• and more

What’s it got to do with Autoimmune Diseases?

“The typical medical approach to autoimmune conditions is to suppress the immune system with anti-inflammatory medications, immunosuppressives, corticosteroids, chemotherapy and other medications to try and slow down the damage. But this is a bandaid approach in that it covers up the symptoms and lessens them, but doesn’t do anything for the root cause or any real treatment. Suppressing the immune system is never a good idea as it can lead to a greater risk of other infections.” – Ross Walter

What can you do about it?

1. Get professional help > There is no better guide around Leaky Gut than a Naturopath who can review a holistic strategy of how your individual and unique circumstances might exacerbate or affect a leaky gut.

2. Diet >  The quickest thing I’ve read one can do is review your diet and what foods or drinks might cause the most irritation or sensitivity eg I don’t eat so much bread as I noticed, I always broke out in my skin the next day after eating it. A naturopath can help you do this by way of an elimination plan. I don’t like to use the word ‘diet’, it shouldn’t be a diet per se but a conscious lifestyle decision. Learn your inflammatory triggers. Becoming aware and more conscious of your food and drink choices is highly enlightening and helps to avoid some symptoms that might be caused by your leaky gut.

3. Probiotics > Add probiotics into your medicine regime with the help and guidance of a professional. Probiotics can interfere with your current medicines so don’t just go out and decide when and how much to take. When you’ve found someone to help you such as GP or a naturopath, my chemist recommends to go for at least 50 billion organisms per tablet and go for strains that include the LGG strain (and note that it’s heat-sensitive).

There are certainly heaps of ways to heal a leaky gut, for some further reading, check out these books:

Leaky Gut Syndrome 

Heal Your Leaky Gut: The Hidden Cause of Many Chronic Diseases

Leaky Gut: A step-by-step solution on how to reverse the leaky gut syndrome, reduce inflammation, relieve pain, restore your gut microbiome and regain energy

Hey! So one of my resolutions is to be as open and real about what’s happening with my health, and given I have a bit of a minor (but major to me lol) procedure coming up. Though it might help also might help others who might have something like this coming up too. When I was first told my doctor this would happen my first thought was what is a temporomandibular joint injection?

So, what is a temporomandibular joint injection?

An ultrasound-guided injection of a corticosteroid to my jaw joints (left and right, temporomandibular joint).

When?

Next Monday, Feb 20 at 1 in the afternoon.

Why?

Late last year I had problems opening my jaw and had limited opening. I had an MRI earlier this year which showed I had severe degeneration of the joint (arthritis in my jaw, both sides).

What happens?

From my understanding, the injection includes anesthetic so that’s the part that stings.

Tips

I have a wonderful friend over at www.enabledisabled.com.au who has a wealth of knowledge especially when it comes to arthritis-related issues, having juvenile arthritis herself she’s experienced things first hand.

• If you’re nervous like I’m sure I will be on the day, take a Valium about 45mins before the actual procedure and ask a loved one to be with you (I’ll be taking hubby in that’s for sure) just to calm down anxiety
• Make sure to eat 6 hours before as you’re not allowed to eat after that as the injection may make you nauseous
• You may sip water up until 2 hours before your appointment (other than your Valium 45mins before) you water intake shouldn’t be more than a small half cup per hour.
• On the morning of the procedure have a shower and change into comfortable clothing. Minimise jewelry and valuables that you bring
• Don’t take anything that has blood thinning properties e.g aspirin, warfarin etc.

Here’s what I’ve noted

• During the procedure, the finest needle is used. In it is a mix of the anesthetic and the steroid. In one shot, better than the anesthesia first to numb the area because it’s a bigger needle too. So it’s all in one shot.
• Before the shots on both sides, I can take 10mg Valium about 45 mins before. Usual is 5mg
• Make sure someone is with you after the procedure and watching over you overnight to follow just in case…of issues.
• Don’t use your jaw at all for the following 48 hours (e.g talking, yawning, chewing etc)
• Since you shouldn’t chew, have smoothies prepared for nourishment (frozen banana & berries/frozen zucchini & broccoli etc)
• If you feel a cold ice pack is almost cool, put an old pair of denim jeans/shorts in the freezer, it’s cold enough for a bit of relief
• When sleeping, lie on your back avoid sleeping on either side that your jaw injection was on (in my case both)
• Note also, you shouldn’t have more than 3 injections in a joint within 5 years (more could lead to necrosis of the joint)

Thoughts

So we’ll wait until the next flare up (hopefully not in the jaw ever again lol). Stay tuned. If it does happen, will let you guys know how it goes 🙂

 

If you have an autoimmune disease, you’ve probably been told to try to eat whole foods as much as possible in order to maintain your ideal weight. But in instances where you find you can’t, look for package food with food labels with nutrition facts like below. Earlier this year I discovered what to look for in food labels aka nutrition labels and now I want to share with you what I found.

My own ideal goals, eat foods with these ranges on food labels:

Sodium: <120mg

Sugar: ~<10g (4g is approx. 1 teaspoon of sugar)

Dietary Fibre: >4g

Fat: ~<10g

Saturated Fat: <3.3g

Carbs: <20g

How to understand food labels according to Australia:

 

 

Before we start

Remember when thinking of these things you have to talk to your doctor to help make a plan together. If you are in ‘remission’ from your autoimmune disease like I was at the time. This means your disease is inactive then you can attempt to overcome pred. It’s a slow process and it will take time, but it is achievable to taper to a lower dosage.

Initially

There’s a heap of stuff on Prednisone online and people’s experiences, so instead of regurgitating all that info here, I wanted to get straight to the point. This post is for those who already know what prednisone is; what it does (both a miracle drug and a curse); and, have been on it long term (as in more than 5 years daily! Not just a few months)

I have talked about weight fluctuations, side effects (such as moon face, buffalo hump), bruising, and a plethora of other prednisone-related stuff throughout other blogs so I’ll skip this for now.

Let’s get straight to it and research I’ve found helpful. Note that it’s still an ongoing battle for me, but I have a lot more faith that I will be able to live pred-free in the future, it’s just going to take a conscious lifestyle, behavior changes and a lot of patience.

It’s a SLOW process

One thing I have to mention before I begin that I cannot stress enough is that getting off or weaning prednisone isn’t a matter of willpower nor personal achievement – you can have this in spades – you need to understand that being on a drug as powerful as this changes your body.

Grace Tabitha Lim of Health Matters Blog (2012) explains:

“It is a function of weaning a glandular system from a manmade substance that causes it to cease production of its own product and putting that complete glandular system back “online.””

In other words, your body has either stopped or greatly reduced creating cortisol naturally and has now become dependent on prednisone to provide it.

Do not, under any circumstances, go off prednisone suddenly on your own without medical supervision. Going down too fast or when your body isn’t ready can be life-threatening, and in my own personal experience, it can lead to seizures and other not very pleasant side effects. Stopping Prednisone abruptly/cold turkey could have dire consequences in the form of strong ‘rebound inflammation’, pain, and a worsening of the disease for which you are taking this drug.

Tips:

Talk to your doctor!

• After reading the following ideas, tell your doctor what you plan to do, this doesn’t have to be done alone, let someone be aware of what’s going on so they can also track you and you can do it in a safe way.
• You can come up with a schedule together (e.g each week or month going down at 1mg or 2.5mg at a time…whatever your doctor and you agree to start off with and then you can adjust too as you go on).

Lifestyle Habits

• I don’t want to use the word diet, I’d rather think of it as conscious eating.
• Keep a diary of what you eat and do each day and then make note of how each food, drink or activity made you feel after and the day after – did they affect you? If you did less of something or more does this make a difference? Personally, I find drinking alcohol as a huge cause of inflammation so I’ve stopped drinking any sort of alcoholic beverage. I also found white bread, caffeine, too much sugar, red meat, and tomatoes also aggravate symptoms. I am still on the journey of discovering what habits help or hurt, and continuously learn & research about anti-inflammatory foods etc.
• If you can minimize symptoms and the condition for which you originally take prednisone for, then your body will also have an easier time getting off it, it’s not good trying to get off it if you still have many of your condition’s problems.
• Remember, there’s a reason you started taking prednisone in the first place.  It is amazing in helping those with autoimmune conditions par none, so be aware when coming down from it you need to do it slowly.

Exercise

• As much as it sounds scary for those with autoimmune conditions where symptoms are very much pain-centric, exercise is so important.
• Low impact exercises such as walking and swimming are great, and call help battle the side effects of prednisone such as weight gain, buffalo hump, and moon face. However, do take note you can still do this and those side effects will still occur but not to the degree as they would have you not be exercising.
• A large part of autoimmune conditions is also being fatigued and tired easily, exercise may sound like the opposite but in doing it, and you’ll generate more energy.
• Remember to pace yourself, it’s no good going all out hard-core workouts and then having to pay for it later with flare-ups of your condition, and more pain than it was worth. As they say everything in moderation.

Drink water

• You’ve probably heard this a million times, and not just for Autoimmunees but for overall health in general – water is the real miracle. Drinking water helps to flush your system out and is so important to drink at least 2-3L if you’re on prednisone. I won’t go on about what would happen without drinking enough water, you’ve heard it all before, most people today are actually dehydrated leading to a number of problems not just autoimmune related.

Supplements

• As mentioned before, I won’t go deep into the whys and whats (you can read about this further somewhere else) but from my collective research here are the main supplements that can help overall autoimmune health and important to take as you taper down: Vit B12 spray, zinc, fish oil (note some people have adverse reactions to fish oils, I’ve found flax a good substitute, again best to discuss with your doctor), Ashwagandha, St. Mary’s Thistle (great for your liver), probiotics (go for those with the LGG strain, best kept in the fridge),  and overall preconception vitamins (even if you’re not trying to get pregnant, these have a good range of vitamins you may need).
• See a naturopath to give you your own unique plan that suits you best to help you lower your dose safely, they will review your current medications and blood tests.

Palliative Medicines

• In my personal experience, weaning down can be painful, even just a difference of 1mg can cause all sorts of changes. So, as I go down (super slow like 1mg a month now) I also take other meds to help relieve symptoms so as not to take more prednisone to help me, if that makes sense? To alleviate pain, I use Paracetemol/ Tylenol as long-term medicines, they are basically paracetamol based and can help rather than taking NSAIDs which can be harmful to organs over long periods of time. Of course, with all medicines, nothing really should be taken, but in my case, they have been very helpful.
• Discuss first with your doctor for other palliative medicines as every body is different. 

Do you have any tips to share on getting off Pred? Share your stories and experiences below

 

I’ve met some really amazing and wonderful people at the hospital. From caring nurses to outstanding doctors with bedside manners that all medical practitioners should strive for.However, there have also been some hospital staff that, not only I but friends of mine have encountered, that let’s just say are a little lacking in those areas of customer service. I’ve touched lightly before on the different perspectives in the parties involved in medical care for autoimmunees. You can read more about this in The Watcher and the Autoimmune Patient and I want to let you know I understand that doctors are people too. But one thing medical practitioners sometimes forget is that their patients are also people. People with autoimmune diseases don’t choose to be sick, why would anyone choose to have such conditions? So when an autoimmune patient is being somewhat difficult remember it’s just like any other disease, we go through the motions and need to be guided with a caring hand not someone who is going to make the whole process just more stressful. Continue reading “Hospital Staff” →

Wheher from the patient or even from family & friends, there seems to be a lot of confusion about the word ‘steroids’ and ‘corticosteroids’.

Are the steroids that autoimmune patients are prescribed, the same as those drugs known to be abused in competitive sport?

Continue reading “Prednisone aka Corticosteroids” →

You’ve probably read or heard a little something here or there about Aromatherapy. The first time I heard about it, it sounded like something you could only do if you had lots of time or you could experience only at the local spa. But the truth is, it’s not just some airy fairy spa treatment or some time consuming activity, in actuality, it can be an uplifting and relaxing activity. Continue reading “What is Aromatherapy?” →