Category Archives: Uncategorized

I’m moving – new blog

Hi guys,

Has it really been 8 months already?! I haven’t been very good at posting regularly on this site and with everything that is going on, I have decided that I want to start a new blog. You may have noticed that I have already deleted mylungsmylife’s facebook page a while ago.

My whole blogging experience has been amazing and has opened up a new world of online support groups and friends, but this blog depicts my struggle for diagnosis and treatment which is still very relevant but also something that I do not wish to remember every time I log in. I want my new blog to be about awareness, just like this one but also about how to advocate for yourself in a time with huge pressures on the healthcare system, about how to make informed decisions about your healthcare and medication, and about how to live well with inflammatory arthritis.

If you would like to check out my new blog, please check out the link below:

I hope to see some of you over there!!


2014 in review

I got an email today showing the annual stats for this blog so I thought I would share it with you. Thank you to everyone who follows this blog!

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 10,000 times in 2014. If it were a concert at Sydney Opera House, it would take about 4 sold-out performances for that many people to see it.

Click here to see the complete report.

Question: How do you tell your friends if you are having a tough time or flaring? ~ Anon.

Well it depends really. I tend not to tell my school friends if I am having a rough time because I think it would be quite hard for them to understand and because I find it hard to talk to people about how I am doing health-wise face to face. I much prefer talking to people about my health, when we aren’t in the same room. But if my school friends do ask, I usually tell them that I am just tired. However, I do rely heavily on my friends who have chronic illnesses when I am flaring.

If I were you, I would only tell your friends what’s going on if you feel comfortable to do so and I really do recommend going on social media sites like Facebook or Twitter where you can talk to people who are going through exactly the same thing.

I was wondering if you have any autoimmune illnesses in your family. I have just been diagnosed with Rheumatoid Arthritis but I am the only person in my family who has an autoimmune condition ~ Alice

Hi Alice, sorry to hear about your recent diagnosis and I hope you can get everything under control really quickly!

I have a really strong family history of autoimmune conditions including Lupus, both seropositive and seronegative Rheumatoid Arthritis, Psoriasis and Raynauds. But just because no one in your family has an autoimmune condition doesn’t mean you can’t develop one, just like having a strong history of autoimmune diseases doesn’t mean you are going to get one too.

Bye bye 2013!

Last year I made 3 New Years resolutions:

1. To get my asthma under control and to try and keep my peak flow in the green zone

2. To get fit, and possibly get a FitBit to help me with that

3. To stop biting my nails

And to be honest I think I have done pretty well with the asthma control thing, even though it meant I had to increase my symbicort to 3 inhalations twice a day. And although my peak flow is more up and down than I would like, and I haven’t been able to reduce my symbicort, I still feel that I have done pretty well with managing my asthma, and I have only had a few scary attacks this year.

And I have been really good with the not biting my nails part of the resolution. Okay, so I admit I have had a few relapses and started biting my nails again but I have always stopped and just yesterday I broke a nail for the first time! That is a huge milestone for me! Okay, huge is a little exaggeration but I am still proud that I have stopped.

As for the getting fit, I think that was quite a bit flop. Yes, I got myself a FitBit (2 actually) and I do walk more than I did before but due to the big flare I had at Easter, and my issues with chlorine in swimming pools I have found it really hard to exercise. Even stretches and non-strenuous exercises send me into flares, I used to be able to do the plank for 10 minutes easy, and the reverse plank for even longer, and now I can’t do either without killing my joints (another slight exaggeration there but you get my gist). But since my asthma has been more controlled I should really just go for it when I can. I have to accept that I wasn’t as fit as I was, and so I will have to build up my firmness again. Can you guess what one of this years resolutions is? Yup, you’re right! I am going to get fit this year, I have planned out when I am going to go to the gym, when I am going to swim, and what I am going to do each week exercise wise. And hopefully with the help of my first (and, fingers crossed, last) course of hydrotherapy, I will be able to manage this resolution this year.

Talking about planning… That brings me onto my second resolution for 2014. I really need to get more organised with this blog. This year, I’m going to try and find more guest posters (please see the Contact Me page if you are interested!) which means I will have to look a few months in advance for people, to give myself and them time to sort things out. I’m also going to try and post at least once a week!

My aim this year is to get to 200 posts! Yes that will mean posting more that once a week on some weeks but I think that is more than manageable. And that is my third resolution this year.

Speaking of posts, I am going to write my first book review early this year, which should be very exciting. That isn’t a resolution but I thought I would stick it in here anyway.

So my fourth resolution is that I am going to start up a second blog about being a physiotherapy student, providing I get a place at a university. I’m not going to dwell on this too much because I may not get a place and if I do, it’s going to be a resolution that won’t actually happen until late September. I just think it would be nice for potential physiotherapy students to hear what it is like going to university and having weekly updates about what my particular course entails, or at least, that is what I would have liked when I was researching the course.

My fifth resolution is to learn some sign language. I’m not actually sure how I will go about doing this, but I will finish college in June and I won’t start uni, if I actually go, until late September/early October so I am going to have some spare time on my hands.

My sixth and final resolution is to become a better patient advocate for myself. This includes actually seeing my rheumatologist this year, and phoning her when I am having issues.

Blimey, 6 resolutions this year! It’s going to be a tough year, full of new, both exciting and scary experiences (possibly) including moving out and going to university which I am both really looking forward to and dreading at the same time. It is quite a terrifying thought that maybe this time next year, I will be part way to becoming a physiotherapist. But I DO want to be a physio, and I want to be the sort of physio who advocates for her patients, like mine does for me right now.

Cruddy memory and a very honest person

I am having a seriously bad day with my memory today. I’m going to put it down to my being so tired. In fact this week has been a bit of a bad week regarding my memory. When someone asked my advice about their Personal Statement for their Uni application and I didn’t know the answer, I suggested they should go and see our college’s Careers advisors, Stella and Cathy, except their names came out as Cella and Stathy. That was slightly embarrassing.

Today, my parents took me Christmas shopping which I really needed to get started on, and half way round we decided to go for a coffee. That sounds perfectly good right? Well when we left the Café I forgot my bag which had my purse in with my bank card, provisional drivers license (which will tell anyone who looks my address), and some money and my bag also had my house keys, my inhaler and my phone in it. Seriously I don’t know how I forgot it!

In fact I didn’t even realise, I had forgotten it until my name was announced, and suggested that I should go down to lost and found. I was kind of amused that someone with my name has lost something, then I thought “Oh crud! That’s me!” and then I was trying to work out what I had lost and how the staff knew my name. When I finally did realise, I was so embarrassed! And anyone who knows me, which know that when I am embarrassed I turn every shade of red known to man, which makes me even more embarrassed!

I didn’t deliberately forget my bag, who would? And I imagine that it is a fairly common occurrence in Cafés but I was still mortified. I’m starting to see the slightly more funny side to it now, but I am so glad that somebody honest found my bag and handed it in, rather than taking my money and my phone!

One pill is kicking my joints’ bum

Okay so the title is a bit of an over exaggeration… One pill cannot fix whatever is happening to my joints but it sure is helping. This morning I woke for the first time in a few years without being so stiff that my joints were sticking out at strange angles and refused to budge. And for the first time since I can remember I didn’t notice my pain until half way through the day. I mean that’s astonishing!!! I’m practically speechless.
The first thing I said to mum this morning was that I’m not stiff waking up. Of course she didnt really understand what I was talking about since I usually just blather on in the morning but that was my first thought of the day 🙂 in all honesty the novelty only lasted till about 3pm this afternoon when the med started to wear off but that gave me almost 15 hours of relief and although my pain wasn’t completely gone and the joint cracking is still very load and very sore my pain is a heck of a lot less pain than I was having.
So indometacin (the new pill) is an NSAID which is short for Non-Steroidal anti inflammatory drug… That’s basically a fancy name for anti inflammatory drugs like ibuprofen. I have to take it once a day at night and because it is in a slow release capsule it lasts me most of the day or as I have found about 15 hours. However if you have asthma it isn’t really advised that you take NSAIDs without seeing your doctor first because it can sometimes trigger asthma (word of warning!). So I thought I’d share a picture of my indometacin because who doesn’t like pictures… Even though its only of a boring tablet.