Tag Archives: 2014

It’s official, I have a diagnosis!

I never thought that I would ever be writing this post. Ever. I mean I had thought about it, I had longed for it but I never thought that this would be real. I have a diagnosis guys… I have an actual official diagnosis from my Rheumatologist. I have Raynaud’s and an, as of yet, unidentified autoimmune inflammatory condition. It’s been years and years but I have finally got here.

It’s weird because I was so stressed about getting fobbed off again by my rheumatologist but she came through for me just when I was getting ready to give up on her and try someone else. All of my physio’s have said how good she is at her job, but until today I had never actually seen why people were saying that.

It all started like a normal clinic appointment, i.e. sitting in a waiting room,  surrounded by people who are decades older than me, and as usual I was the youngest patient there. There was quite a lot of medical students hanging around in their pale blue scrubs too, and I have come to the conclusion that this must have been their first experience in Rheumatology based on how clueless they were. I got called in to see my Rheumatologist early [this was unheard of until today… I guess today was a day of firsts] and she asked if 2 of the medical students could sit in on my appointment, which of course was fine. She asked me how I was doing and I told her that I wasn’t the best. I told her about my issues  and how my joints are being problematic on nights out which is preventing me having an enjoyable time. The worst my joints have been was this past Thursday where my knees and ankles swelled up so much, and were causing so much pain that I had to be carried around. Literally, one of the guys on my course had to pick me up and carry me around with him.

This was the main cause of me having to be carried around... My ankle was so swollen you couldn't see my ankle bone any more.
This was the main cause of me having to be carried around… My ankle was so swollen you couldn’t see my ankle bone any more.
This was how swollen my left knee was a few days after Thursday's night out, it had reduced by quite a lot thankfully but was still swollen.
This was how swollen my left knee was a few days after Thursday’s night out, it had reduced by quite a lot thankfully but was still swollen.
Another picture of the swollen knee
It’s slightly easier to see the swelling in my left knee on this picture [right hand side of the picture]

My Rheumy totally understood how embarrassing it was to have to be carried around on a night out, especially by someone who was on the same course as me, which was nice of her. She also asked about my morning stiffness which is now lasting about 2-3 hours every morning and then about 1-2 hours after sitting immobile for any longer than about an hour. She agreed that, that wasn’t fair on me and was too long, which again was nice as she doesn’t usually say anything. She examined my knees and found crepitus [cracking/grinding noises and sensations] in both knees but more so in my left knee which makes sense as my left knee is significantly worse in terms of pain, stiffness and inflammation than my right knee. I also let the two medical students have a feel of my knees although neither of them could find crepitus in my right knee, which we think is because of all the movements they were getting me to do was loosening up my knees so they were less stiff than they were when my Rheumy has examined them. My Rheumy also didn’t find any fluid on my knees which is excellent news, even though I wasn’t expecting there to be any fluid.

My Rheumy then looked at my ankles and again found no fluid but found quite a lot of restriction in the range of movement, although this is nothing new and has been the case for the past few years. However she did notice that my feet were extremely cold, and my toes were “like ice blocks” which I always assumed was normal for me. She asked if my feet ever change colour, which they do into a disgusting looking white/grey/blue colour. She then looked at my hands and found the same, that my fingers are freezing cold and change colour when they get really cold. Based on this I was diagnosed with Raynaud’s, a condition that causes discolouration of fingers and toes because of excessively reduced blood flow to the extremities… Mine occurs usually because of the cold, but we believe that it is autoimmune in my case [not everyone’s Raynaud’s is caused by the immune system attacking it’s self].

My Rheumatologist felt that my joint pain, swelling and morning stiffness had been going on long enough now that we should probably start treatment so I was prescribed Plaquenil [Hyrdroxychloroquine] 200mg twice a day. Plaquenil is a Disease Modifying Anti-Rheumatic drug [DMARD] which should basically reduce the activity of the condition [even though it still hasn’t been identified] and hopefully will help with the inflammation I experience. However, Plaquenil can take up to 12 weeks to work so I was given a steroid shot intramuscually into my bum [yes it was painful!] which should hopefully help out with my symptoms until the Plaquenil kicks in. Apparently the steroid should work within 36 hours which I am really looking forward to, because as I sit here I am really struggling with knee and ankle pain despite Naproxen and paracetamol.

This is the first of many Plaquenil tablets that I will be taking.... LETS DO THIS!
This is the first of many Plaquenil tablets that I will be taking…. LETS DO THIS!

I am struggling to comprehend that I now have a diagnosis, it has been so long that my emotions are literally a mess… Relief, anxiousness, worry, happiness, there are too many to list. I am glad that I have a diagnosis, and I am glad that I am getting the proper treatment, but I am slightly upset that I actually do have an autoimmune condition but that’s expected right? I mean, I always knew that I had something going on, but no one wants to be sick! As you can see, I am still not 100% sure of my emotions, which is perfectly fine, today was a lot to deal with, but the main thing is that we are on the right road now!

I see my Rheumy again in March to see if the Plaquenil is working, fingers crossed it does!

Halloween pranksters – egging

Throughout the lead up to Halloween there was a lot of things popping up on my Facebook feed about The Teal Pumpkin Project, which is essentially an initiative that enables kids [and adults] with food allergies to go trick or treating for non-food treats. All you had to do is paint your pumpkin teal to show that you were offering non-food alternatives to the usual sweets and chocolates and people who were avoiding foods could come to you and know that they could enjoy themselves while being safe. Personally, I think that was a really clever project and it has allowed so many more kids to be included in activities without having to worry about whether they were going to react to the treats they were being given. You guys might find it strange that I am writing about this today when Halloween was on Friday, and in fairness it is strange, but I am not writing this blog to talk about The Teal Pumpkin project. I’m writing this blog to talk about something else, related to Halloween, that is happening more and more commonly nowadays… Egging.

For those of you who don’t know what egging is, you’re lucky! It is basically when someone chucks a raw egg at your house… or even worse, actually at you. Although I have known what egging is for a long, long time I hadn’t actually experienced it myself until Friday. To be honest it sounds rather funny [or hilarious], and I am not even angry that a guy ran up to me and smash an egg on my head [even though it hurt so bad at the time, I thought I had been glassed]. In fact I am grateful it happened to me, because if it had been my friend who was standing right next to me she would have ended up in hospital. Why? Because she is severely allergic to egg.

There is so much awareness about safety when it comes to trick and treating but when the tricks can cause people serious harm then where is the fun in that? Unfortunately people don’t think enough about allergies, and when they aren’t directly affected many people forget that other people DO have allergies. I have come to the conclusion that when drink is involved people become selfish and are willing to ruin people’s nights out by egging them and they don’t think about the consequences at all, all they think about is how to look “cool” in front of their friends, and how to have a good time… Although I can’t see how egging someone is entertaining.

I understand that people do get pranked on Halloween but in the future I really hope that people will try to have fun in a way that doesn’t put other people in danger. You can’t tell if someone has an allergy, it’s an invisible illness! Please don’t assume that other people don’t have an allergy, just because you don’t have one yourself.

 

Here’s to the future

It has been ages since my last post and I do apologise for that. Those of you who know me personally will know that I have been having a tough time recently, both physically and mentally. Part of my lack of posts is a result of my going on holiday with my family which was totally awesome… but it was slightly overshadowed by the fact that someone close to me is incredibly ill and that we have no idea what is going to happen in the near future. I am not good with dealing with situations like this, and my way of coping is ignoring what is happening rather than facing it head on. The future is uncertain for everyone whether you are ill or not, and that stresses me out even more because I need some stability in my life but right now my life is anything but stable. When it comes to medical things, I like to know the plan and the back-up plan but in this case there is not a back-up plan, and I can’t tell you how much that scares me. This friend is not the only one who is ill but she is the sickest.

On Thursday I find out whether I get into University or not, and instead of being worried about whether I am going to uni to study the course I want to study, I am worried about staying home since my relationship with my family is less than perfect right now. Everything that has been going on in my life has resulted in me acting totally out of character and pushing the people who care about me further and further away, until it has gotten to the point where my family is literally at breaking point. As it turns out, when I am under this much stress I’m not always a nice person.

I haven’t been sleeping well recently… which is saying something because I don’t usually sleep that well but maybe when Thursday has come I will be happier because I will at least have some direction in my life and I will know what I will be doing in the next year academically, but until then my life doesn’t really have any clear direction.

I’m finding it very difficult to keep this post going and I’m finding it hard to say how I am feeling in a way that other people can understand and I think that is a result of my mind being such a crazy tangle of emotions that I really don’t know how I feel. I am hoping that come Thursday, that my stress levels will have reduced enough for me to make sense of my head so I can leave the place where I am at right now and just move ahead with life rather than feeling stuck. Here’s to the future!

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!

Juvenile Arthritis Awareness – Christine’s video

Today Christine Schwab posted a video onto her Facebook page. It is one of the most emotive videos I have seen, and it’s all about Juvenile Arthritis awareness! I will admit that I did cry during it. I don’t think people, who aren’t affected directly by JA, realise how hard it can be. I recognise so many of the kids on the video! I’ve followed their blogs, spoken to their parents, followed their pages. I think the video is just that little but more emotive when you know some of the kids on it, you know their story, you know their hardship.

As I am writing this post I’m just thinking of some of the kids and what they have been through. Hundreds of needles, chemo, hospitalisations, infections, pain, swelling, fevers, surgeries and the list goes on. If you know anyone who has arthritis this video will really touch you, especially if that person you know is a kid.

The second song in that video really got to me. Every single word is true for JA…

“All the lonely people cryin’
It could change if we just get started
Lift the darkness, light a fire
For the silent and the broken hearted

Won’t you stand up
Stand Up
Stand Up
Won’t you stand up you girls and boys?

Won’t you stand up
Stand Up
Stand Up
Won’t you stand up and use your voice?

There’s a comfort
There’s healing
High above the pain and sorrow
Change is coming
Can you feel it?
Calling us into a new tomorrow

Won’t you stand up
Stand Up
Stand Up
Won’t you stand up you girls and boys?

Won’t you stand up
Stand Up
Stand Up
Won’t you stand up and use your voice?

When the walls fall all around you
When your hope has turned to dust
Let the sound of love surround you
Beat like a heart in each of us

Won’t you stand up
Stand Up
Stand Up
Won’t you stand up you girls and boys?

Won’t you stand up
Stand Up
Stand Up
Won’t you stand up and use your voice?

Won’t you stand up
Stand Up
Stand Up
Won’t you stand up you girls and boys?

Won’t you stand up
Stand Up
Stand Up
Won’t you stand up

Won’t you stand up
Stand Up
Stand Up
Won’t you stand up and use your voice?”

JA isolates kids and families, without people like Christine and The Arthritis Foundation these families would stay isolated. The comfort? That’s the support of all the other families going through EXACTLY the same thing. The healing? That’s the cure we get one step closer too every day! When someone is diagnosed with JA, the world literally falls apart for them and their family, they have to face a totally new situation, a situation that demands a strong mindset to choose between two meds that have equally horrible side effects, a strong family to deal with the mental strain that JA puts on each individual family member, and a really strong kid!

There is no doubt in anyone’s mind, that JA needs more awareness.
We all need to stand up for JA, together.