Tag Archives: Q&A

Arthritis Awareness Month Q&A

May is Arthritis Awareness Month, and although I do not have a diagnosis, I do live with bad joints and chronic pain and so here are the answers to some of my most asked questions.

[Note: Some questions have been paraphrased!]

Why haven’t you been diagnosed yet?

Wow, tough question. I’d say that there a few factors in why I haven’t been diagnosed. The first is that I haven’t seen my Rheumatologist in 17 months which is both my fault and her fault. The second is that while I have symptoms and some signs, I don’t have any radiological evidence (i.e. inflammation showing on MRIs/X-rays). But then again that could be because I didn’t swell at all until a year ago, and I haven’t seen my Rheumatologist in that time. Another reason is that when I say my neck hurts, I get an MRI on my lower back… that doesn’t make sense to me. She was looking for inflammation in a place that didn’t hurt. Basically I am a complex patient who needs to see her doctor more…

Why do you have to wait so long to see you rheumatologist?

Well there is a shortage of paediatric rheumatologists which must play a role but essentially I fell off of my Rheumy’s patient list for some reason. But I didn’t know this until a year later, and then it took me another 5 months to get an appointment. I think the key issue here was the lack of communication between me, my Rheumy and GP. We are all partly to blame and I should have picked up on it sooner rather than being patient.

Do you want to be a physio because you have bad joints?

Essentially, yes. I have one physio who I have been with since I was 11 and she has been able to sort out appointments when I haven’t managed. She has referred me on to my Rheumatologist (twice now), to intensive physiotherapy numerous times and she has been working her butt off to get me into Hydrotherapy. Basically, I can thank her for everything that has happened really. So I want to be able to do that for a patient too. There are actually no words to describe how much I appreciate her.

Do you take any medications?

For my joints? No. I was prescribed an NSAID last year but we didn’t agree and I stopped it. I’m hoping that my Rheumy will prescribe me a new NSAID which will hopefully work, and which won’t give me too many side effects.

Heat pack or Ice pack?

100% heat pack! I find that ice makes me ache more so I only use it when I am really swollen or on my hip bursitis when it’s radiating heat.

Have you had an MRI?

I’ve had numerous MRIs… 2 on my back, 1 on my knees, 1 on my hands and wrists. Just imagine it as lying in a (very loud) polo mint!

What is the worst thing about having bad joints?

Erm, good question… There are quite a few bad things but I think the worst would be the lack of sleep. Painsomnia (basically Insomnia caused by pain) keeps me up most nights so I miss having that good night’s sleep. Also, I absolutely HATE it when your joints get in the way of doing something fun/ruin a fun time… We went to Disney Land Paris the other year and although it was fun, I could hardly walk the next day which put a bit of a downer on the holiday… Or when I am driving (I love driving) and my neck is hurts to turn it and I have to stop driving and swap with my Mum or my Dad, that upsets me quite a bit too. But I try to not let my joint stop me from having fun on the whole.

Which joint bothers you most?

Well I guess I should say my left knee, since that is the worst one and then my Right ankle, some toes & joints in my mid-foot, my right hip (which also has bursitis), most of my fingers and wrists, and also my neck and more recently my lower back/SI joints. I’m fortunate that it isn’t all of my joints that are bad, and I can generally cope with whatever my joints try to do.

Do you use any gadgets to help you with your joints?

Do heat packs count as gadgets? I don’t really think I do… I guess I use the Microwave to warm up a heat pack, and I use my phone and some apps to track how my joints are doing, but on the whole, no, I don’t use any gadgets… But if you have any suggestions I am more than willing to try some!

World Asthma Day 2014 Q&A

Today is World Asthma day and in an attempt to raise some awareness about what it is like to live with asthma (from my perspective) I’m going to be answering some questions that my followers have e-mailed me. [Sorry for the late reply for those of you who have asked me questions!!!]

[Note: I have paraphrased some questions]

How were you diagnosed with asthma?

I was having issues with symptoms when I was exercising and people in my Cricket club were starting to make comments when we were playing matches about how loud my wheezing was, or they would ask me if I was having an asthma attack etc. So I headed off to the GP who sent me to the asthma nurse for a Spirometry. Basically, at that point, my Spiro was normal (because I wasn’t having symptoms) so my nurse and I decided to try a peak flow for a few weeks. Based on the massive variance in my peak flow, coupled with symptoms, I was diagnosed with asthma.

Do you see a consultant for your asthma?

Nope, I’m under the care of an Asthma Nurse (who is actually a Diabetes Nurse) and my GP. I don’t have severe asthma so I don’t need to see a consultant.

Why did you start this blog?

Basically, I started this blog to try and raise awareness about asthma and other chronic illnesses, and also to share my experiences with asthma (and bad joints) with other people. I found it extremely helpful to read blogs after I was diagnosed, so you never know… someone might find this blog helpful.

Are you worried about going to University?

Erm… I’m going to presume you mean, am I worried about my asthma. Well that would be a yes and a no. I’ve never had severe asthma, or had attacks that have landed me in hospital and I feel quite safe in the knowledge that I can manage my asthma, and attacks, fairly well by myself. And, of course I know when I need to see my GP. But then I am slightly concerned about being able to afford my medication, thankfully there are pre-payment schemes that are cheaper in the long run but there is always that worry in the back of your head. I’m very fortunate to live in a country with a National Health Service that subsidises the cost of medications, otherwise I would be forking out a fair bit of money.

Does asthma affect your life much?

Well, asthma is always in my thought processes when I go out… Money, check. Bag, check. Inhaler, check. But overall asthma doesn’t play a massive role in my life, I don’t have severe attacks, and I am pretty well managed. But of course, those nights when your asthma isn’t behaving it’s self as well as it should are rough, or if you are having a bad day, that’s hard. You can’t completely separate your life from asthma because you are living with it, but I am lucky enough that I don’t have to think about carrying around a portable neb or bringing umpteen different inhalers with me.

How do you go about getting an asthma plan?

I asked for one… When I was getting put on my first combination inhaler (Seretide, AKA Advair) I figured it was time to have a better understanding of my asthma and what I should do when.

If I were you, I would either ask your GP/asthma nurse or your consultant, if you see one.

How did you find out your triggers?

The hard way… i.e. by being triggered. I don’t have allergic asthma so allergy testing would be pretty useless for me, so I just made a note of when I h attacks/exacerbations and what caused them. Of course it isn’t always that easy, and sometimes multiple factors play a role e.g. having a cold and meeting another trigger, or having a cold and meeting something that doesn’t normally trigger you, which causes an attack/symptoms (or at least, it does for me).

 

So that was my Q&A for asthma, I have another one to raise awareness about Arthritis/bad joints that I will post in the next few weeks.

If and if you have any questions feel free to comment below or visit my “Contact me” page.

A month full of awareness!

May is Asthma Awareness month and it is also Arthritis Awareness month… So I’ve decided that I will do 2 question and answering session. My inbox has gotten pretty full with questions, many of them that are quite similar, so I figured that I would write 2 posts answering these questions. One post will be about asthma and where I will answer the questions that link to asthma… And the other will be about my joints. I don’t know if I have Arthritis but I do know what it’s like to deal with stiff and swollen joints and chronic pain so that will be the main focus of that post…

So why am I doing this? Well, I want to show people what it’s like to live with asthma and bad joints and I want to help people to understand how these conditions can effect people’s lives.

This month is also Cystic Fibrosis awareness month which I totally acknowledge and I will try to get a blog post for that but no promises guys!

Question: How do you cope being undiagnosed for so long? ~ Lauren

Hi Lauren! No one has ever said that being undiagnosed is fun, because it isn’t. It’s a constant battle with the system to get appointments, to get the treatment that is available to you, and in truth I find it really hard. But the fact is that you can’t diagnose yourself, even if you are 100% sure of what is going on, you have to wait for a health care professional to work it out.

I find that blogging about the trials and tribulations of being undiagnosed is quite a neat way to get my emotions out and to *hopefully* help others who are having similar experiences. Through blogging, I have become a member of the chronic illness community, even though I don’t have a diagnosis for whatever is going on with my joints. I speak to people from all over the world on a daily basis, and I think that is really cool, especially because even though you live thousands of miles away from each other, you all have something in common.

If you are struggling with being undiagnosed, I’d suggest having a look on twitter for people with similar conditions/symptoms and having a look on Facebook for support groups, and if you want to… why don’t you try your hand at blogging too?

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.