Category Archives: Review

Asthma action plans and vaccinations

First of all, I apologise for not finishing RABlog week… My life is super hectic right now with the uni work mounting up and living with a chronic illness so sometimes it’s hard to keep up with the blog too.

Today I had an appointment with my new asthma nurse to see about getting an asthma action plan. I have found that recently my asthma has been a lot more controlled than it has over the past year and I am having virtually no symptoms unless I am sick… which I was the other week when I made this appointment. Stupidly I hadn’t thought about getting an asthma action plan earlier so I pretty much just survived on Ventolin because I wasn’t ill enough to see the GP or asthma nurse.

This new asthma nurse is amazing. She checked my inhaler technique without my asking [it’s always better to know that you are doing something like this correctly, even if you have been doing it numerous times a day for years] and she didn’t put a huge emphasis on peak flow numbers. My new asthma action plan doesn’t even contain any peak flow readings to work off because my nurse would prefer me to treat based on symptoms and not to get too caught up with readings. She did ask me to check my peak flow a couple of times a week though because this can provide an early warning for whether my asthma is getting worse or not. We also discussed my treatment options. She asked me whether I would want to try the lower dose of Seretide even though when I was on the equivalent dose of Flutiform my chest got bad again… I agreed to give it a go because I really don’t like taking inhalers/medication at all, and if there is a chance that my asthma could be controlled with a lower dose then that would be awesome. I have been given a prescription for 3 months of Seretide 50/25 to take, and I still have 3 months worth of Seretide 125/25 so I have been told to switch up and down in accordance to my new plan. And if I find that my asthma does become worse again on the lower dose then my asthma nurse is happy to switch me back up to the higher dose. She explained that some people need the higher dose to stay stable, and it is better to have he best control possible over asthma than to get caught up trying to reduce the dose when you can’t.

I also got given the flu jab and the pneumonia vaccination… one shot in each arm. Surprisingly the flu jab hurt a lot more even though the pneumonia vaccination needle was larger. I can’t remember if I wrote about my experience with the flu jab last year but I ended up with an incredibly itchy and hot red circle around the injection site last year, which popped up a couple of days after the jab. I have the same red circle at both injection sites this year but the rash came up within an hour of getting the jab. Thankfully it isn’t too itchy right now but I am keeping a close eye on them. I presume it is just going to stay as a local site reaction because I haven’t got any other symptoms apart from being slightly achy which is awesome!

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A failed 12 of 12

So I tried and failed to do a 12 of 12 today so I am going to incorporate the pictures I took today with just a general blog post/update.

Those of you who know me know that I haven’t slept well at all since February… Partly because the bed in my flat is not comfortable and partly because of my joints but mainly because the people in the neighbouring flat are so loud. They play instruments and video games at all times of the day and night so I am lucky if I only wake up twice in one night, most night I am woken up between 3 and 5 times, more if I am unlucky. But because of all this I am pretty exhausted so on days like today when I have to get up even earlier than usual I find it really hard. 

The past few months I have had increasing amounts of hair loss to the point I need to unblock the plug everytime I shower. Everyone experiences hair loss every day but when it has suddenly started increasing, it is a bit worrying. If you add that into my other new/increasing symptoms like my nose ulcers it pretty much points to autoimmune. But my mum was getting worried that I could be slightly anaemic and wanted me to get it checked out by my GP.

Today was the day I went to the GP about it. I only rang yesterday lunchtime and managed to get an appointment for 8.10 this morning which was surprisingly fast but did mean that it was an earlier start than usual. The second problem, or what I thought was going to be a problem, was that this appointment was supposed to be with a GP that I vowed I would never see again… Why? Well that’s because in December right after I had been diagnosed I went to see this GP who turned around and told me straight out that I was going to become disabled because I have an autoimmune condition that isn’t magically going to go away?! Who says that to anyone! He wasn’t an expert in my condition and I was literally so appalled and gobsmacked that I couldn’t even think of anything to say, I literally just sat there and gawked. But hearing that this was the only appointment available I decided to give him a second chance… 

I turned up at the Surgery for 8.05 so there was 5 mins before my appointment… Turns out I could have turned up at 8.30 and still been early.  

 

I had the whole waiting room to myself and the GP was half an hour late! Not a good start.

But when I finally got in with the doctor he was brilliant! Totally different to what he was like last time! I did wonder if I was actually seeing the same doctor at one point. I wasn’t met with the cold GP who appeared not to care but I was greeted by a guy who was trying his absolute to do his best for me. 

We started by checking my asthma out. I switched from Flutiform 125/5 (3-4 puffs twice a day) to Seretide 125/25 2 puffs twice a day which seems illogical because that is actually a decrease in the total amount of inhaled steroid I would be taking a day but I did it anyway and it worked!!! I have only had one attack (actually it was 2 but it was one after another so I am not sure if is a continuation of the first attack or if it was actually 2 separate attacks) which was my fault because I exposed myself to a trigger stupidly and then suffered the effects. But if we ignore that then I have had virtually no symptoms at all! Not even during exercise! That is pretty much a first ever since I was diagnosed! My GP was actually ecstatic, he was so happy for me. We even had a little competition with peak flows… He betted [Note: we didn’t actually bet anything] that I could reach 450… 1st blow was 420 so not quite there. 2nd try 440! 10 points off!!! 3rd attempt 440… So I didn’t quite get the goal but it was very close and 440 is a good peak flow value for me. And if you accompany that with my lack of symptoms your doctor will write down on your records ASYMPTOMATIC!!!! So the decision is to stay on this dose of Seretide indefinitely, either until I feel that I can step down or if I need a higher dose for some reason. It isn’t clear why my asthma is controlled on this dose of Seretide when Flutiform, Symbicort, or a combination of Clenil and Serevent didn’t help before but as long as it is helping I don’t really care about the science behind it.

Then we went onto the hairloss and ulcer. The GP thought that these were probably because of my autoimmune condition… Although a side effect of Plaquenil/Hydroxychloroquine is hairloss. Having said that, it is unlikely that the Plaquenil is causing my hair to fall out since I have been taking it since Novemeber and this is a recent symptom. As I said earlier mum thought that I could be slightly anaemic which I mentioned to the GP and he was more than happy to run some bloods for me. I got my ESR (Erythrocytes Sedimention Rate – I.E inflammation levels), LFTs (Liver Function Tests), HbA1C (looks at blood glucose levels over a period of time) and my thyroid function tested as well as the usual CBC (Complete Blood Count). 

The actual blood test was fine except I bled through a cotton wool bud and then proceeded to bleed out the side of the tiny little plaster they gave me.

 

But apart from that everything was fine and I only got 3 vials taken, which, if my memory serves me right, is the smallest number of vials I have ever given? It has bruised pretty well though.

So that all happened before 10am and that was essentially all I did all day, apart from some revision which was broken up by watching episodes of Orphan Black… Unfortunately I have finished every episode of Orphan Black on Netflix so I feel a bit lost now.

Like I said, I have massively failed on that 12 of 12 since I only took 3 photos but I was in my room literally all day apart from for the appointment  and the fire alarm that went off (if you’re a student living in halls you will totally understand). So there is an update and a totally failed 12 of 12… Maybe we should just call it a 3/12?

The first appointment of 2014

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I really should have written this post on Friday, since that was when I had my first physio appointment of this year, but I haven’t really had chance to write it and up load it until now.

It’s always a bit daunting when you have your first appointment in the first week of the year, I always think that anyway. And so, I was quite nervous going in, which is strange because my physio and I have known each other for 7 years… The best part of a decade.

I wasn’t exactly sure why I was going to see my physio since we had already agreed that I was going to try hydrotherapy but since my brother had an appointment, for a sports injury, I had told her at my last appointment that I would tag along too. When we arrived everyone was at lunch and so it was only my family in the waiting room, which was good because it is THE smallest waiting room I’ve been in and that includes the rheumatologist’s, dermatologist’s, opthamologist’s, nephrologist’s, nuclear scanning, MRI as well as all the usual waiting rooms that you get (I.E. GP, dentist, etc.).

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That picture shows the whole waiting room, not just part of it.

When I got called into see the physio, we exchanged niceties, you know the “Hi” and “hope you had a good holiday” and things like that. She asked me how I had been, but to make things interesting she wanted to know what was happening where in chronological order since we last met… That kind of threw me a bit since nothing about what happens to my joints is chronological, it all tends to happen at once. So after explaining that, I told her that the bursitis is back in my hip (I was diagnosis with that 2 years ago, maybe? By a different physio), and I explained that my ankle had kept me up till 3 that morning and I told her how I thought I had tendonitis in my knees. However, it turns out that I don’t have tendonitis, I have inflamed ligaments in my knees… I’m not sure what the medical name is for that so I’m going to call it “ligamentitis” which is may or may not be a technical name but it explains exactly what’s going on. We aren’t sure at all what is causing this “ligamentitis” since I haven’t done anything at all to hurt them… We figured it is just another part of what’s going on with the rest of me.

We talked about my rheumatologist and apparently it is REALLY hard to get in contact with my Rheumy, and that’s coming from another health care professional, but we are just hoping that this lack of communication is because of the holidays. However, my physio did say that even if I don’t get an appointment this month, that I will get an appointment soon… THIS MONTH?! I was expecting 10 months from now, not in the next few months. Oh and I also got a bit if a telling off for stopping my indometacin than the Rheumy prescribed without her knowledge, and was told that if anything was prescribed I have to see the Rheumy before I stop it so another med can be prescribed.

As for the hydrotherapy, I am currently on the waiting list, and apparently they are supposed to start sending out appointments next week. So by next week, I might know when my appointment will be, of course it all depends on how far down the waiting list I am but I’m totally fine with waiting. In the mean time, my physio has said that I should start swimmingly again and she has also given me a print out of some of the exercises I will be doing at hydrotherapy to do myself.

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All of my exercises are for my trunk and lower body and aim to improve muscle strength, posture and flexibility, although reading through some of the exercises, I hate to think of how people will react if I do these in a public pool but you have to do what you have to do. And if it does all go wrong, we at least I have something to laugh about later (once I have got over the embarrassment).

Finally my physio told me that she is going to keep me on open service, which means that if I have a problem, I can give her a ring and come in ASAP. When I asked her why I was on open service she told me that once I have finished this course of hydrotherapy I should be moving up to adult services so by keeping me on open service then I can still see her until we both agree for me to move up. But since she is essentially overseeing all of my care, she is unwilling to let me go just yet. This actually feels like a bit of a blow since we have been working together for 7 years now and she has seen me through flare, after flare. She was the one who sent me to my Rheumy in the first place and got me to see every other physio I have seen, and she is one of the main reasons I want to become a physiotherapist. By loosing her I will be loosing a key member of my team, the one who has advocated for me for so long. It will be immensely sad letting her go. But this is also a chance for me to become a better advocate for myself, I am going to have to phone my rheumatologist when I have a problem, I will have to re-arrange all the scans that are always ordered for the wrong part of my body, and I will be the main co-ordinator in my team from then on. That’s actually quite a scary thought, but it has to be done by someone, and I know my body better than anybody.

A new type of appointment and a theme park adventure

I thought I would do a quick update on the last two days and just cover everything that has happened fairly briefly.

On Tuesday I had my general health clinic with a nurse at my GP surgery, which actually turned out to be my annual asthma review. This was my first annual review for asthma, since I’ve only been officially diagnosed with asthma for a hear (almost). And I was with a different nurse to either of my two usual nurses, but she was really lovely. This really confused me since it was basically an asthma review but a very short one. The nurse also took my blood pressure which was fine, my BMI (now 20.44, which I’m okay with. I used to be dead on 18) and my heart rate which was slightly high and made the nurse a bit concerned. I did tell her that my heart rate had already been 160bpm that day which I probably shouldn’t have since she almost freaked and started looking at every heart related thing on my medical files. She did come to the conclusions that a high heart rate for me, is pretty normal. I had already worked this out though so it wasn’t big news or anything like that.

The nurse also asked me if I was having any asthma symptoms, and in all honesty I’ve been feeling much better (with exception to Wednesday, as you will see later). I kept giving her pretty brief answers which was clearly not what she wanted since she kept asking more questions… Do you get short of breath? do you get chest tightness? do you cough? do you wheeze? does it impact on your exercise? To all the answer was yes but I’m a lot better than I was which I think puzzled her a bit, but in the end she accepted it.

This appointment took all of 5 minutes so we spent 10 more minutes talking about college and university and extra curricular activities which to be honest was really fun since she kept giving me tips and telling stories about her university days. And in the end she said that I was the easiest patient that she has ever had, which is pretty awesome since I tend to be listed as “complex” and “unusual” in the majority of my medical files.

So Wednesday I had a really busy day, and also a really fun day planned. It was my Dad’s birthday so I got to give him his presents which was excellent. And my friends also took my to Alton Towers which was also really great.

Unfortunately, Alton Towers is fairly far away from where I live so I was up at 5.30 in the morning to be ready. As usual, when I go on a long trip, I was majorly over-prepared. I mean I had made up my own first aid kit, consisting of Ibuprofen (for me, I don’t hand out medications to other people), a vast variety of plasters, paracetamol (also for me) and ibuprofen gel for my joints (for me too!). And that was in addition to the asthma medications that I had. I took 3 ventolins and 2 symbicorts with me and I am really glad that I did. All of my inhalers are dry powder inhalers and I didn’t really think that they would get wet since they were all deep inside my bad. Hindsight is a wonderful thing, and looking back I wish I had left at least on symbicort and ventolin in the car. I took 2 open ventolins and one brand new one and one opened symbicort and one brand new one and went on the log flume. I really didn’t think about my bad getting wet at all until about half way round the ride. As soon as I got off I checked my inhaler (my inhalers are more important to me than my phone since I can live without my phone for longer than I can live without an inhaler). One ventolin, which happened to be brand new, was soaked and I had to throw that one out since when the powder inside gets wet it cant be inhaled as it sticks together in one lump. The other inhalers were just wet on the outside, although I still don’t know about my new symbicort since I haven’t used it yet. Only time will tell. But I think that this is a good lesson learned about where you should keep inhalers, especially DPIs (Dry powder inhalers) when I am at the theme park, or anywhere wet for that matter.

I walked a total of over 17km and over 25,000 steps including 150 flights of stairs, yes 150 flights of stairs was no joke, (all according to my fitbit. My and GG (a twitter friend) have concluded that so much walking set my asthma into overdrive and my being soaked to the bone in freezing water for over 8 hours really didn’t help. This resulted in me taking 1200mcg of ventolin (6 puffs of a ventolin accuhaler, or 12 puffs of a ventolin Evohaler) as well as my 3 symbicort in the morning and at night (I also added a sneaky puff in at about lunch to see if that would tide me through to my evening dose, which it didn’t) and I mean that is a heck of a lot of bronchodilator! And then to try and stop me needing anymore ventolin I decided to drink a cup of black coffee with 6 sugars in it (also to keep me awake on the drive home) since coffee is a mild bronchodilator, BUT SHOULD NOT BE TAKEN AS A ALTERNATIVE TO VENTOLIN/WHICHEVER BRONCHODILATOR YOU ARE PRESCRIBED. And that didn’t work either.

I got home at about 11pm and went straight into the shower to try and heat up, baring in mind I had been soaked on a ride at 3pm and I was still wet. I think a combination of the ventolin finally kicking in (it had been working but not enough to give me so much relief that I didn’t need more of it) and my finally getting warm made my lungs actually want to behave a bit more and so I’m not coughing half as much as I was and I am not wheezing (a sign that I am pretty bad, since I tend to only cough until I let my lungs disobey me too much) so I think I can finally get some sleep. I haven’t slept since 5.30am so I am pretty exhausted and when your asthma is playing up, it drains your energy a lot faster too.

A review of 2012

2012 has been quite an eventful year for me, I think the most relevant to this blog was that it was made on the 21st of October. Now if I just reviewed 2012 from October to December I would miss out 9 months if the year so even though I haven’t been blogging since January, I am going to review the year from then 🙂

So in January 2012 nothing much happened. I did have an appointment with the Rheumatologist which resulted in me getting a full body bone scan done. The results from the scan were inconclusive, something to do with the scan being harder to interpret when a person is still growing. However my blood work still showed the antibodies that are associated with Juvenile Arthritis (which I will blog about in the new year). I was also tested for lupus (which I shall also write about in 2013) but thankfully that test came back negative.

February was remarkably uneventful, nothing particularly important happened. I did go skiing with my family which was fab and my then-undiagnosed asthma didn’t even bother me which was even better.

In March I started going to physio again mainly for my shoulder which would dislocate if I picked up anything heavier than a bag of sugar (not fun and very painful) in fact my shoulder had become so weak I was told that I didn’t really have any muscles on my back holding my shoulder in because the muscles had stretched so much with my shoulder dislocating and subluxing all the time. My shoulder had been bad for about 3 years and I had failed all other rounds of physio that I had had before. But I am glad to say my shoulder hasn’t dislocated or partially dislocated since July. One good thing that came out of all these dislocations is that I am an expert in relocating my shoulder 🙂

April was another pretty boring month along with May nothing much happened except my asthma was starting to bother me more and more. And what was even worse was that I didn’t have an inhaler to use so I had to just wait out my attacks, but they weren’t very severe as I could still talk throughout.

June was a pretty eventful month. I had got sick of the asthma so I made an appointment at my local GP surgery. I got an appointment and the doctor pretty much dismissed me she didn’t give me an inhaler but she did send me for pulmonary function tests with the asthma nurse but that wouldn’t be till July. In June I also celebrated my 16th birthday and finished secondary school which was quite a big deal.

So in July I finally got my pulmonary function test which came back all clear, but the asthma nurse was a bit concerned with the wheezing and chest tightness I had been experiencing and so sent me off with ventolin and a peak flow with instructions to take my peak flow morning and night, before and after exercise and pre and post ventolin. I went back to see her two weeks after my first appointment and she was really shocked at how bad my peak flow was during and after exercise. And so I was diagnosed with exercise induced asthma. I was also given a brown inhaler (clenil modulite 100) to help prevent attacks.

In August my asthma was still uncontrolled and so I was given serevent, a long acting bronchodilator to try and prevent attacks. In August it also started to get cold and my joints really started to be an issue, it was taking 2 hours for my morning stiffness to go as opposed to the 1 hour it had taken in previous months, and my hip flared so much that I could hardly walk. I was on the verge of going to the doctors and asking for some pred (an oral steroid) I was so bad. Eventually the flare calmed down on its own but my joints haven’t been the same since unfortunately. August was also the month that I got my GCSE results in, all passes WOOP! And I finally finished physio on my shoulder.

In September I got a chest infection and went to the doctors again but the doctor I saw was completely incompetent and couldn’t hear anything in my chest even though there was an audible wheeze that even my mum commented on (she still doesn’t believe I have asthma) and so I was given nothing not even a short course of antibiotics. In September I also started sixth form college to study biology, chemistry, psychology and German.

In October I got another chest infection and yet again I went back to the doctor who I had seen before but this time I took my mum with me and yet again the doctor said there was nothing wrong with my chest and then he got confused between the pain caused by a chest infection and a heart attack so I was sent for an ECG which of course showed that I had not had a heart attack.

In November I went back to my asthma nurse and we decided that the serevent was not helping my asthma and I was switched onto seretide which also includes serevent. So I am now taking a combination inhaler of which only one component works. So I was not too impressed but I decided to give it a go. My asthma was also upgraded from mild intermittent (exercise induced) to mild persistent and now finally to moderate persistent asthma.

Now in December my asthma has not improved, I haven’t been in the green zone since late September early October, my peak flow stays around 65-70% but I did manage to get up to 75% a few weeks back. My joints have also been flaring a lot this month my neck and ankle in particular. I had an appointment with my rheumy a few weeks back who was shocked that my morning stiffness now lasts at least 3 hours and in my neck and ankle’s case pretty much all day. So I’m being sent off for more scans and hopefully for some more physio.

And that was pretty much all that really happened in 2012. Im curious to think about what 2013 will bring.