I’m lost

I finished my pred burst over a week ago and I can’t really explain how good it was to go 2 weeks with hardly any pain. I have had chronic bursitis in my hip for 2 years, and this is the first time in 2 years that it hasn’t hurt at all, even when I prod it. Of course the pred is starting to wear off and the usual aches and pains are coming back which is disappointing because I was hoping that I could get longer… I have had bad joints for the best part of a decade, and this is the first time since then that something has touched the pain… It is hard to explain how good it feels when you are used to an average of 2-3 hours of morning stiffness that suddenly with the help of 8 tiny tablets that you only get 15 minutes… That is less than 10% of what I am used to.

The pred started to wear off earlier this week, and my morning stiffness now lasts between 1.5 and 2 hours, which is still an improvement but after seeing that I could only have 15 minutes of morning stiffness, I’m not that impressed. The question is, what should I do now? I don’t have any active inflammation, but my joints are getting sorer, and they are getting stiffer… I don’t know whether I should try and see my GP and see what he says because I don’t want to let my joints get to where they were before. But there isn’t an awful lot that my GP can do in all honesty because, 1, I am refusing to take pred again unless I really need it and 2, he seems unwilling to prescribe any other NSAID except from Ibuprofen despite the fact I am supposed to be taking Indometacin long term… He even tried to tell my that Ibuprofen was EXACTLY the same time as Indometacin, which I find is quite patronising. They are in the same drug class, and they work with the same aim, but they are NOT the same medication.

So I wondered whether I should phone my Rheumy, who believes there is something going on but neither has the motivation or time to try and find out what that is… She told me to phone for an appointment when I am flaring, which I am not but then is pred helps maybe she should know that? Could that give us a clue to what is going on?

I would phone my Physio, but since I was 18 last month I am not actually under the care of any physiotherapist anymore… Which makes the whole hydrotherapy situation significantly more difficult because I don’t have anyone trying to sort it out for me. To sum up what has happened with hydrotherapy… I was referred in January 2014, I was approved in May 2014 and nothing has happened since despite many phone calls and one visit. The receptionists have tried their best but it seems like there is nothing anyone can/is willing to do and so it looks like I won’t be getting hydrotherapy. Or even if I was suddenly offered a place for hydrotherapy, I won’t be able to go now because I don’t have 6 weeks clear in my timetable for my 6 sessions… I’m not too upset about hydro because I had a feeling right from the start that I wouldn’t get it, what I am upset about is that I have been repeatedly told that I will get hydro which is a flat out lie, because no one can be bothered to do anything. It would have made my life significantly easier if they had told me that I couldn’t get hydro right from the start so I wouldn’t have spent literally hours on the phone trying to sort it all out.

So now I am lost. Actually scratch that… I have always been lost in this NHS system, that’s why it takes me 6 months to get blood test results and the results of my scans, and that is why it took me 17 months to get an appointment with my Rheumy which are supposed to take place every 6 months, and that is why I don’t know who to go to now… because I am totally lost in this fricken system. And if I do actually get into University to do Physiotherapy, I swear that my patients will be treated better than what I have been treated, and I shall make sure that they are not lost.

The wonders of Flutiform

Every time I see my asthma nurse it feels like my asthma plan is getting more and more confusing. Recently my lungs have been good! I have only been in the pool environment once in the past couple of months which is probably a large contributory in the fact that I have only had one (pretty scary) attack since I started Flutiform in March. My asthma nurse and I discussed how much my asthma is affecting me, and compared to before I am doing really well, my Ventolin usage is right down, I have hardly any nighttime symptoms and my peak flow is relatively stable. So we decided that we can reduce my Flutiform dosage from 125/5 2 puffs twice a day, to 50/5 two puffs twice a day… Now, we do recognise that dropping my total daily dosage of Fluticasone (the steroid component of Flutiform) from 500mcg (equivalent to 1000mcg Beclomethasone) of  to 200mcg (equivalent to 400mcg of Beclomethasone) is quite a drop and we have no idea how my lungs are going to react since the last time we attempted to reduce an inhaler I ended up having an attack. But right now I feel confident that my lungs are up to this reduction, and so I am going to give it a go.

I asked the nurse what I was supposed to do if I started yellow zoning, or having issues so we decided that whilst my main inhaler will be the 50/5 I will also have the 125/5 on my prescription and I will start that inhaler for a few weeks when I start having issues. So this means that I will have 2 different doses of Flutiform to work with which makes my asthma plan a lot more flexible but it also makes it somewhat more confusing. However we have decided that if I feel like I need the 125/5 instead of the 50/5 then I can ring in and she will move me onto the 125/5 fully.

We also discussed why we thought Symbicort was making me cough, and  the nurse agreed with my GP that the dry powder was causing paradoxical bronchospasms and that I shouldn’t try another dry powder inhaler… which is a shame because I did prefer the dry powder inhalers delivery system but if it makes me sick, I’m going to give it a wide berth.

I also explained that I am possibly going to university in September and that I am slightly concerned about prescription costs and having everything sorted for university. Apparently I can get an exemption form so I wouldn’t have to pay for prescriptions until the end of university, which means I don’t have to worry about prescription costs until then. And my asthma nurse is also organising me to go in for my flu jab at the start of September so I will be covered. And she also said to start looking for a GP surgery in the city where I will be staying as soon as I know that I will be going to university.  So now I’m feeling relatively relaxed about the whole thing because I know what is going to happen.

There aren’t many words to describe how happy I am about this reduction in steroid dose, this is the first time I have actually had a reduction in dosage… We attempted to reduce Symbicort before but that just went wrong straight away but I am feeling so much better than I did when we tried to reduce the Symbicort so I’m feeling pretty confident that this will work… and if it doesn’t, we have a plan for that too.

Prednisolone burst!

I apologise for my absence on this blog, I have been doing my A-Levels and I have been revising like crazy… My last exam is on Friday so I should be back on here like normal after that.

I am going camping next week with some friends which I am really looking forward to… but as usual, my joints like to remind me that they aren’t that good. These past weeks my actual joints haven’t been that bad but having said that my ligaments and bursitis have been giving me a lot of problems. Thinking back to a few months ago when I walked just under  6 miles in one day, I physically couldn’t walk the next day… I could hardly stand, and my Mum was at the point where she wanted to take me to A&E, I do not want to be in that situation next week when I am away with my friends. I have been putting off talking to my GP about my pain, and my joints for a while because I was always scared to be accused of drug seeking but this week I decided that enough was enough and it was time to talk to my GP. I didn’t have an exam on Monday so I rang my GP surgery and was informed that my GP didn’t have any appointments and didn’t have time to ring me but if I rang back later in the day the receptionist could pass on a message to me from my GP. So I rang back and I was told to take Ibuprofen and Co-codamol (Codeine and Paracetamol)… Not what I wanted to hear. If Ibuprofen worked, I wouldn’t be phoning my GP to ask for an NSAID and I flat out refuse to take Co-codamol on the grounds that it can be addictive.

Monday’s attempt to get some proper pain relief didn’t go very well, and I had an exam on Tuesday which meant that I didn’t have time to phone the GP. So I rang today instead, thankfully my GP did have time to take my call this time but the phone line was terrible and I could hardly hear what he was saying. I asked him if he would prescribe an NSAID since I am supposed to be on an NSAID (Indometacin that my Rheumatologist prescribed, however due to side effects I cannot take it). My GP felt that  a steroid injection into my hip would be more effective than an NSAID but he also thought that my ligaments would also need a shot, meaning that I would have needed 5 injections which we both thought was a bit excessive since I set off on my Camping trip on Sunday. So it was decided that a course of oral steroids would be the best option… I haven’t been on Prednisolone since I was about 11 or 12 and I have never been on Pred for my joints, so I am interested, and excited, to see if it will help. Starting tomorrow I will be on 40mg of Pred for a week [I may have accidentally written 7 weeks on Instagram and scared some people... Sorry about that guys!], and I don’t have a taper… Some people have assured me that because I am only on a week of Pred that a taper isn’t necessary whereas other people aren’t so sure… So I think a trip down to the Pharmacy is required just to check if everything is okay.

The dreaded Devil Tablets

I did ask my GP what would happen if these didn’t work, or if my Bursitis came back (I am considered to have chronic bursitis since I have had it for 2 years now) and he said that he could prescribe these again, but I don’t really want to have to depend on oral, or on injectable, steroids to control my bursitis. My GP didn’t actually seem that bothered, and I don’t think he quite grasped the fact that I HARDLY EVER SLEEP THROUGH THE NIGHT BECAUSE OF PAIN… And because I can’t actually get a physical appointment to see my GP, I don’t understand how I am going to go about getting my pain under control after I have finished this course… But I can worry about that as and when it happens, and for now I can enjoy a week of being pain free! [Or at least, a week with less pain]

Reflection

Yesterday was a very emotional and trying day for me, I feel that my frustration was probably shown very clearly in yesterday’s post, but I wanted to write another post today.

It’s quite hard to take everything in when you are at a doctors appointment and I still find it hard understand everything that has happened even after the appointment. That is partly because so many things happen in an appointment, partly because I was so worked up about the things that went on in the appointment and partly because I am really, really sleep deprived and so I think it’s good to reflect on how the appointment went after you have calmed down a bit, and gotten the most extreme emotions out.

So thinking back to yesterday, I try and work out how it could have gone better. Well I think my first mistake was that I didn’t slow down at all. I had an hour and a half exam in the morning and then I went straight from the exam into my doctors appointment. Unfortunately, I couldn’t just avoid an exam but I could have taken 5 minutes to read through what I wanted to discuss with my doctor and just to calm my nerves a bit.

The next thing I thought about was what was actually said in my appointment… I initially didn’t really think anything that useful was said in the appointment because my doctor doesn’t say an awful lot of things aloud, she either writes them down or keeps them locked away in her head. I thought that the best way around this was to ask direct questions but I ended up getting vague answers, I asked open questions and I got vague answers. Basically the majority of the things my doctor said was vague. But I did find out that I am HLA-B27 negative, and I did find out that my inflammation markers are either within normal range or slightly low. That’s interesting. I also found out that my MRIs have shown no inflammation which is also interesting. Although none of this makes any sense to me right now, I’m sure that in the future
I will know what this means. [Note: I do know what having normal inflammatory markers etc means, what I am trying to say is that I don't know what they mean in my case. Everyone is different!]

One of the most difficult things about my doctor is that I can’t understand her. During my examination she asked if things hurt which they did but she didn’t say anything about that. I told her that my ligaments has been bad, she didn’t say anything about that either, but she did give them a good prodding so she did listen, she just didn’t acknowledge what I said in any kind of obvious way. Facial expressions are usually quite helpful when you are having “read” a person but my rheumatologist has no facial expression! It’s like speaking to a brick wall, she never smiles, she never frowns, she never portrays any emotion. Unlike a lot of health care professionals I have spoken to, I have no idea what she is thinking, she doesn’t let on one single bit!

Although I came out if my appointment thinking that I hadn’t gotten any further with anything I have found that my doctor hasn’t given up on me just yet. She has told me to come back when I am flaring, and she is going to try and work out a plan of action based on my latest bloods. I came out of that appointment feeling useless and horrible, and that wasn’t the doctors fault, it was because I had built myself up to such a frenzy before going in and it was because I was expecting the impossible. That was daft, and I should know better but I am feeling much more confident now that I know exactly has gone on in my appointment and my emotions aren’t clouding my understanding. I will admit to having a good cry last night but I feel so much better for it! This is the most positive I have been about my joints in a long time.

My physio didn’t phone me last night like she said she would but that hasn’t really upset me. It’s given me longer to think about what is going to happen. I AM getting hydrotherapy which I fully believe will help significantly. I AM getting new insoles soon, so
I can speak to that physio about the issues with my feet, toes and ankles and hopefully get some answers about that then. And although I didn’t manage to get an NSAID out of my Rheumy (I don’t actually know if she knows I haven’t taken Indometacin in over a year) I know that I can go to my GP and get one.

My appointment absolutely crushed me yesterday but thinking about it today, I feel like I do have a chance and it was just one of those horrible days that I can put behind me now.

An extremely frustrating appointment

Well I had my Rheumatology appointment today, many of you who follow my blog will know that this was my first appointment in quite a while and so I have been quite stressed about it.

I was secretly hoping that I would get a diagnosis but if course that didn’t happen. Lots of people suggested writing a list of things to talk about, including symptoms, and to take pictures both of which I did but my Rheumy asked if she could keep them right at the start of my appointment so I didn’t have anything for my reference… Thankfully I wrote quite a bit on that sheet so she can see all of my symptoms.

She examined my ankle, knees, toes and hip and we spoke briefly about what an X-ray of my ankle had showed last year (an anteater formation which is basically fusion of the bone) and whilst she couldn’t see the X-ray she read the radiologists report which said the finding were normal?! How can the findings be normal if I have fused bones in my foot? So she is going to try and find the actual x-ray to have a look at… This is the unfortunate thing about being seen by 2 separate NHS trusts, there is hardly any communication between the two… I also asked her about my ligaments which were tender to touch but she didn’t say anything about that… In fact she didn’t say much about anything.

We discussed my blood tests, apparently all of my inflammatory markers are in range except from one which is slightly too low… How can it be too low? Isn’t that a good thing? But she said not to worry about that. She also said that an antibody has shown to be positive but not significantly postive… And when I asked her which antibody it was she just explained that it is linked to arthritis blah blah blah blah…
It’s so frustrating that she doesn’t just give me a straight answer!

I also told her about my cousin who is in the process of being diagnosed with psoriatic arthritis and she said it was highly unlikely that I had it because my gene marker [she means HLA-B27] was negative, but of course this doesn’t rule anything out…

I didn’t even get to ask about a new NSAID because the appointment was going so badly and my Mum was being a little bit of a nightmare so I just left it…

So the plan is to go back when I’m having a flare, which could take a while since I haven’t had a full body flare in quite a while, just mini flares… The vampires also took 7 vials of blood which wasn’t too bad (except from where I bled all over the nurse) and she is going to phone me with the results and give me her game plan…

Thankfully my physio is phoning me tonight so she might be able to help me on the points that I didn’t get to discuss with my Rheumy… My main concern right now is how I am going to walk around New York in the summer?! I can’t walk 3 miles without issues so how am I going to walk around NYC?!

Overall it was a very frustrating appointment and I left with more questions than answers…

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.