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.

 

Do you know what inhaler you are on?

I have just been reading a blog post on Asth.ma [a blog by an Asthma Researcher at Harvard] about how a lot of people don’t know the names or doses of their inhalers whereas they often know the names of the other medications that they take e.g. Enbrel, or Methotrexate. And it has really got me thinking about 3 conversations I have had in the past couple of weeks.

A few days after I had moved up to uni I found out that one of my flatmates has asthma, and being naturally inquisitive I asked her if she was on any sort of preventer inhalers, to which she replied that she was on the purple one… I knew she meant Seretide/Advair and I didn’t really think that much of it because so many people know their inhalers by colour rather than by their actual name that I wasn’t that concerned. I wasn’t even that concerned when I found out that she didn’t even know the dose of her inhaler, but I could see just by looking at it that she was on the 125/25 Seretide inhaler. The next week I had 2 similar conversations with two other people from uni, both of which had asthma severe enough to be on an inhaler corticosteroid combined with a LABA [Long acting beta antagonist]. One girl identified her inhaler as being red and white – meaning that she took Symbicort, but she didn’t know if she was on the 100/6, 200/6 or 400/12 dose, and the other said that her preventer inhaler began with an “R”… We later identified her inhaler as the new Relvar Ellipta inhaler using google.

At the time I didn’t think that much of it, but if either one of these 3 people has any sort of emergency or ends up in a situation where they need to identify their inhalers they are going to have a really tough time. 2 of them didn’t even understand why they were moved off of Clenil [AKA the brown inhaler] and onto an inhaler containing both an corticosteroid and LABA… They both said that their doctors/asthma nurses had said they need to take something stronger but hadn’t gone into any detail about what the “something stronger” was. Am I the only one who finds this remotely worrying? Absolutely not, and the point was well highlighted by Dr. Wu.

Personally, in addition to my Ventolin, I almost always carry my asthma medication card in my wallet/purse [anyone can order a card from the Asthma UK website, here] which, gives details on all of my asthma medications. This including the name of my medications, the dosage, how much I take, when I take it and there is also a column for extra information… For example, since I have been prescribed both the 125/5 and 50/5 doses of Flutiform, I have written that I would take the 125/5 if I am yellow zoning, and I have written these zones in too. This means that although I know what medication I take, by name, if I was ever in a situation that meant that I could not talk then health care professionals do not need to mess about trying to find what medications I am on. This also helps when I see my GP or asthma nurse because we are able to discuss medications in full rather than getting confused with all the different colours…

[Note: I do admit to using the colours to identify inhalers in some situations but this is purely to help people understand which inhalers I am talking about, and I would not do this unless I thought necessary to aid understanding]

Freshers’ flu

So I am heading into my third week at uni and so far it has been a blast. I have made new friends, and [thankfully] I have settled in really well. I am quite lucky in the fact that I have always been very independent and I was ready to move out, so this transition, though scary as it was to begin with, has actually been really good for me.

I have been going out a lot with my flatmates and other people on my course, and it has been excellent fun, although it has been very tiring, especially for someone with [self diagnosed] insomnia because I can’t sleep during the day unless I am ill, and I wake up early on a morning so my average hourly sleep was about 4 hours during the first week of uni… Thankfully now it has increased to about 5 or 6 so I am not constantly knackered. However, the lack of sleep in addition to mixing with new people, living with new people, and partying a lot made me more vulnerable to illness and I have ended up coming down with what only can be described as, the dreaded, Freshers’ flu…

It all started last Saturday when I was feeling a little bit off, and I didn’t really want to talk to anyone or to eat anything. I kept getting spells of being boiling hot then freezing cold… but I decided that I would be fine and I went out that night anyway. BIG MISTAKE… Those of you who know me, will know the details of the events that night but for those who don’t, lets just say that you should try to think rationally, and be responsible even when you are drunk. I did a stupid thing that night that very nearly put me in hospital and it ended up with my asthma control being chucked out the window. Every since then I have been fighting to get my asthma under control: bumping up my Flutiform to 3 puffs twice a day, then up to 4 puffs twice a day [so I was essentially taking the equivalent of 20 puffs on the brown Clenil inhaler]… and I was still needing quite a lot of Ventolin throughout the day. Being the person that I am, I figured that I could cope with it and that I would be fine after a couple of days, which I was also wrong about. I had a constant temperature from Saturday through to Tuesday, my asthma just didn’t get better [but it didn't get worse either, thankfully] and my usual asthma cough became a lot deeper and very productive… essentially I developed a chest infection.

I am registered with a new doctor up here, but I didn’t think I was bad enough to go and see what they said because I have had things like this before and I have always gotten over them after a few days. I spoke to my Mum and she agreed that I should wait and see what happens. Well it got worse, thats what happened. I woke up at about 3am on Tuesday feeling sick to my stomach and wheezing up a storm. I was incredibly short of breath and coughing up massive amounts of disgusting stuff [sorry if that was TMI] and my chest was really tight. I was feeling so ill that I couldn’t even stand up and I had to crawl to the bathroom, which thankfully is only a metre or two away from my bed. When you feel that ill and you have a temperature it is very difficult to think clearly and it is also very difficult to stay calm… my initial thought was that I needed an ambulance, but then I thought that I was so out of breath I probably wouldn’t be able to speak down the phone, so my next thought was that I needed my inhaler… Thinking back, I don’t think I was ill enough to need an ambulance, especially as I hadn’t actually tried my inhaler and in pure panic had crawled straight to the bathroom… My inhaler did work after quite a few hits, I stopped counting after 10 but it was definitely under 20 puffs total and my lungs were responding. Then I thought that I should tell my Mum to come and pick me up and we could go to urgent care to get some antibiotics, but then I figured that since I was breathing a lot easier I could wait until the morning as I didn’t think that Mum would appreciate the wake-up call… but thinking back, that was probably a bad idea as no one knew that I was feeling so ill. Somewhere in that situation I briefly thought of crawling down the corridor to wake up my flatmates so they could get help… but I decided against that too. However, if this ever happens again [and this is advice to all of my readers too] I definitely suggest that you let someone know, because things might not turn out so well… And generally when you are thinking you need an ambulance, you do need one.In the UK there is a service that allows you to text the emergency services if you are in a situation where you find you cannot speak for one reason or another, however you do have to register your phone first before you do this. [PLEASE SEE HERE FOR DETAILS]. I am actually kicking myself looking back because I should have told someone but my brain doesn’t work that well when I have a temperature and so I didn’t think clearly about what could happen.

It’s over a week since I first got sick and I am improving dramatically… The secretions in my chest are a lot thinner and easier to move when I cough although, I am still coughing more that I would like to, my wheezing has been at a minimal for the last couple of days, I am sleeping a lot better, my temperature has been normal for quite a while now except from a little episode yesterday. On the whole I am feeling significantly better, but I would not like to repeat any of that again.

A busy few weeks

My life has been pretty hectic recently. I found out I was going to go to university about a week ago (on the 14th) which I really wasn’t expecting based on how I thought my exams had gone, so I hadn’t bought anything that I needed. For any of you who have moved away to go to Uni, you’ll have some idea of what it is like to find out that you have to get 6 freaking pages of stuff [i.e student essentials] in 4 weeks… and for those of you who don’t it’s super stressful, exciting, nerve-wracking and really expensive! This week I have had to pay out over £500 for necessary things including the deposit on my accommodation, the gym, Uni essentials including pots and pans, bedding, towels and bathroom stuff, and my Gym membership. It’s been crazy expensive week, but thankfully I think I have got almost everything I need to move out, so the next few weeks shouldn’t be that expensive. I have a new found respect for anyone who has ever had to move out and get new stuff because it is far more difficult than I expected!

I am also happy to report that I am back on track with my asthma meds… I took an impromptu break from Flutiform and relied solely on Ventolin for a few weeks which was a stupid thing to do and was a result of the massive amounts of stress I was under from certain events going on in my personal life… I have now either resolved or come to terms with these issues and I am feeling a lot happier. However, my lungs are still hating on me for leaving them without a controller med for a while and so I have had to up my dose of Flutiform back to the 125/5 inhaler but I shouldn’t complain because it was my fault. I am hoping that in a few weeks everything will settle back down to normal, but if not I shall just phone my nurse and ask her to change my repeat prescription back to the 125/5. And that has also reminded me that I need to book in for my flu jab! GET YOUR FLU JAB GUYS! There is no point getting ill if there were steps that you could have taken to reduce the risk.

Now onto the hip… I think I mentioned that my bursitis has come back in my hip, or maybe I didn’t. I am incredibly tired right now because I haven’t slept well in about 2 weeks because of my bursitis and it is affecting my memory so I can’t actually remember if I have told you about my hip. So in short, my bursitis came back about 2 weeks ago after no problems since the end of June when I had a burst of pred. There was a few low points last week where I was feeling really sick because of the pain but thankfully I wasn’t actually sick. I am now considering my options for treating the bursitis again and as far as I can tell I have 5 options:

  1. Continue treating with 1000mg of Naproxen a day, and 1000mg of Paracetamol PRN/every 4 hours, and Ice
  2. See my GP and ask about a burst of pred or a cortisone injection
  3. See a private physiotherapist
  4. Phone my Rheumy
  5. Do a combination

So Option 1 is what I have been doing for the last 2 weeks and although it’s preferable to doing nothing, I am still having a lot of pain and my hip is still warm to touch (except from right after I have iced). As for Option 2, I am feeling particularly self conscious about the way I look right now so pred is definitely out of the question but I might be up for a cortisone injection into the bursa if the GP can guarantee that it will at least help a bit. Option 3 is out of the question, but it was something that my Mum brought up in the middle of the night when I was still wide awake and intercepted her on the landing when she was going to get a drink of water… I have looked at the prices of the private physiotherapists around here and they are all far too expensive, and there is no guarantee that it will help. You may be wondering why I didn’t think about NHS physios, and whilst every physio I have had has been awesome, the waiting time is really long and I just don’t have the time, or the patience, to wait. Option 4 was another idea that my Mum had, again in the middle of the night, but since I have an appointment on the 17th of November [the appointment letter came this week, along with a letter saying that I DO NOT HAVE LUPUS] I might just try and wait it out. The Rheumy also said to phone her if I was flaring but this technically isn’t a flare… or at least, I don’t class it as a flare. Option 5 seems like the best option, there is no way I am going to let my GP take me off Naproxen since it’s the first time in years that my joints have felt relatively good, with the exception of my hip, but I don’t feel like I can carry on with just Naproxen and Paracetamol, as much as I hate to admit it, so I guess I might see about the cortisone injection… Especially because I have read that a cortisone injection could “permanently resolve” the bursitis, which after 2 years would be excellent!

I have been planning/thinking about some more posts that I could do and I may have also found another person to write us a guest post, which I am very excited about… and I also need to ask Justin of Haika Clothing to do another interview with me to tell us about the progress he has made [I am currently saving up to buy some more of his awesome shirts, and $5 of every purchase goes to an asthma charity!]. For more frequent updates check out my Facebook page.

Bad Asthmatic

If anyone has read Rick Frea’s blog on HealthCentral (see here) you will be familiar with the list of personality types (see here)that Rick has come across in his work as a Respiratory Therapist. When I was first diagnosed I found this post extremely useful in helping me to become the best asthma patient I could be.

I used to be what Rick describes as a “Phlegmatic Asthmatic” which is someone who is characterised as remaining calm even when they are having trouble breathing. Although I am a stress-head, I have found that I am able to remain calm in situations such as asthma attacks and other medical situations such as seizures (I have a family member with Epilepsy) which has significantly, especially when the situation is classed as an emergency. However, more recently I am kind of ashamed to admit that I have not kept up with my asthma treatments and my mental attitude was not what it should be. I have had a slightly self-destructive attitude recently, which is my response to what is going on in my life and I haven’t taken Flutiform in a few weeks. No, that doesn’t mean that my asthma is fine with nothing. In fact the opposite has happened and I have had to use Ventolin a lot recently but that is my fault. I basically went from a person with relatively good control over my asthma, to someone who had control similar to when I was first diagnosed before the LABA which was upsetting,  but it still took me till my friends gave me a kick up the backside to get back on track. I have a family member and a close friend who are both very ill and I was too busy worrying about them and looking for clinical trials to think about my health, and it wasn’t till my friend pointed out that being ill myself would not help the situation at all.

I also owe everyone who has helped me out over the past few weeks a big thank you, especially Elizabeth, GG, and my group of girlfriends who I love to bits! I am back on track with my asthma treatments as of yesterday and I am feeling better despite still struggling with my good ol’ asthma cough. I am going to be a Phlegmatic Asthmatic again as opposed to the Goofus Asthmatic that I have become.

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!