Secondary school and chronic illness

When I was at secondary school (ages 11-16) I was incredibly lucky when it came to my joints. I was very close to my PE teachers, and while I didn’t always tell them that I was having a rough time they usually knew and would ask if I needed to sit out. In fact I actually only asked to sit out once because of my joints, every other time they asked me. And more often than not I refused because I loved sports so much I would have rather suffered than sat out. I also used to feel that because I didn’t have a diagnosis that I couldn’t sit out even though it was never really like that at all.

I remember taking a lot of trips to the nurses office in the early days when my fingers hurt too much to write. We didn’t know what I had or why they were sore so she would tape them up to try and give them support while I was writing, and then I would spend the rest of the day trying to hide them from my classmates and teachers so I wouldn’t have to answer questions about it.

When I was in year 9 or 10 I took up the Saxophone which I loved. I couldn’t read music but I could play by ear when my teacher played the piece to me. However, as usual, bad joints decided to interfere and there were some days I couldn’t play because my fingers and wrists were too sore. We changed my lessons to the afternoon/late morning so it would be easier on my joints. I was also a member of the orchestra and some practices I couldn’t play, so I would sit at the back and listen. I usually just told the teacher I wasn’t feeling well but one day I decided to explain what was going on with my joints. It turned out my music teacher had Juvenile Arthritis and totally understood what was going on, and how my joints felt. 

As you can see my secondary school experience was one of support when it came to my joints. There are so many people out there who have to fight their school tooth and nail just to get some small accomodations. I’ve heard of children being made to stand up for hours because the lesson demanded that they should be standing. I’ve heard of parents having to come to school every 3 hours to give their kids eye drops because their disease is attackig their eyes and the school doesn’t want to do the eye drops. I’ve heard of kids being forced to take part in physical education because the school doesn’t understand that kids get arthritis… Probably the most severe issues I’ve heard about is parents sending their sick kids into schools, exposing immunosuppressed kids to the sicknesses that can make them incredibly ill. 

And then of course is the issue of being absent from school. My school was okay with me missing lessons for appointments, especially because I was hardly ever off sick. However for many kids that wasn’t the reality and the school couldn’t understand that sometimes kids with JA/autoimmune joint conditions couldn’t get I to school on time, or at all. And that these kids have a serious medical condition that requires the attention of medical professions, many of whom only have appointments during school time.

Sickness and the joints

This is the first time since October 2013 that I have called in sick to college/uni. I’ve been feeling ill for a few days and then things stepped up on sunday/monday. I woke up and couldn’t swallow because my tonsils were so sore and swollen. I had been up most of night with hot and cold sweats, I had a pounding headache and to top it all off my joints are playing up too. I feel kind of like a phone calling in sick because I was only in for another 4 hours this week but I really just couldn’t handle it.

I had a dentist appointment on Monday so I went to my lecture at Uni since it was only an hour and then headed home to the dentists…. Apparently my jaw doesn’t move smoothly on the right side but we reckon that’s because I grind my teeth rater than from my immune system attacking my jaw since I don’t tend to get much stiffness in my jaw, so I got measured for a mouth guard to wear at night. I could have headed back up to Uni after the appointment but I decided to stay wit my parents because I was feeling run down and I didn’t want to give it to the other girls in my flat, especially because we have an exam next week. And staying at home also means I can sleep in my own bed which is kinder to my joints than my Uni bed.

I get colds all the time and it really doesn’t do anything good for my joints so I am definitely going to mention this to my rheumatologist in March.

Hopefully this virus will pass quickly! But on the bright side I have only missed 4 hours of uni. However I am annoyed that it has come to this since I managed to go to college when I had a grumbling appendix, and I still pushed myself to Uni when I had my chest infection without pushing myself too far. I think that I am learning my limits and learning not to push them when it comes to sickness. This is a learning curve.

Rough day? Tell me about it!

I’ve had a bit of a rough day today. I woke up feeling slightly more stiff and achier than usual… I had slept in a funny position and because my elbows were so stiff it was really hard to get out of bed. Trust me, unless you have some joint/muscle issues going on it really isn’t easy to just roll out of bed in the morning. I usually take a catalogue of things that hurt when I first wake up, today totalled a good 27 joints! That’s crazy! And then when I stand up I re-caculate to see if weight baring is adding anything into the pile… Only the ligaments in my knees and achilles tendons were added. So this mornings total was 27 joints hurt/are stiff and 4 joints are noticeably swollen.

Thankfully as the day went on the joints that hurt/were stiff reduced down to 7… I guess that means that the combination of Naproxen and Paracetamol every 4 hours is good for me.

I then had to go to Uni… I only had 2 lecturers and both of them were only 1 hour each. Normally if my lecture is over an hour long I get really stiff but if they are only an hour long I can usually get away with not being horrendously stiff at the end, although today was rough. I had made the mistake of sitting nearer the back of the room which involves more steps than sitting at the front of the room and I ended up practically waddling down the steps to get out of the room… and then some genius had decided that it would be a good idea to put my lecture room at the bottom of a flight of stairs, so more waddling ensued.

After uni I had to get 3 buses [totalling 1.5 hours] to get the the hospital for my first podiatrist appointment [she specialises in rheumatology]. The journey was really rough, joints seized up again and the bus practically broke down every time we had to go up a hill… It’s not a good sign when you are only doing 20mph on a motorway and really heavy lorrys towing massive JCB diggers can overtake you with ease. Anyway I finally made it to the hospital and got taken 30 minutes early [BONUS!!!] although the waiting room consisted on 3 hard, uncomfortable, plastic chairs so I was really glad to be taken early. The podiatrist told me that she could still feel swelling in both my achilles tendons with my left being the worst, which is odd since my right ankle is actually the most painful. She also gave me some exercises and showed me how to massage the fluid away, and checked my insoles which are doing the job fine. I go back to see her on the 8th of April to see how I am getting on. I asked her if she thought this was autoimmune related or if she figured it was from overuse/flatfoottedness but she said that she was almost 100% it is autoimmune as it is in both feet, and it came on during a flare, and I have had insoles for years which appear to be doing their job correctly. I’m hoping the swelling will be down by April because I am not sure what they will suggest next. Thankfully I see my rheumatologist in March so I will be able to report back that the podiatrist believes this is autoimmune rather than mechanical.

So that appointment only took about 10-15 mins and then I was back on the road on a bus headed towards the bus station where I had to swap buses. I had a 45 minute wait at the bus station which wasn’t too bad but wasn’t the best. I don’t know why but I always seem to attract drama! I was sitting on the bench waiting for my bus and all of a sudden there was this overwhelming smell of weed [anyone who has smelt it will know what I mean], I looked around and there was a guy half hanging onto a railing smoking a joint, completely stoned. Past experience has told me not to bother a person when they are stoned unless you know they won’t kick off at you so I left the guy be until he had finished and asked him if was okay, he looked at me said he needed help and then collapsed… Seriously! [I told you I attracted drama]. So basically all my old first aid training kicked in, there was no danger so I shouted for help… there was loads of people around but I still had to shout twice before someone decided to come over and help and it was actually a girl who was my age, all of the adults just stared [thats the by-stander effect for you, look it up]. I asked her to phone an ambulance and sent another guy to find security. Thankfully the guy fell in the recovery position so I didn’t actually have to do all that much to help him other than keep him comfortable and get as much information out of him as I could. I am almost 100% certain that this guy collapsed because of the weed, but he did manage to tell me that he had a blood clot somewhere in his body which could possibly have explained the collapse. In this time, I managed to miss my bus so I had to wait another hour! And then I had the bus ride from hell, with 2 children who just wouldn’t pipe down… I understand it is a long way for small kids to travel on public transport and I was patient with them but when a kid wipes their spit on my face I am not happy about it… I felt sorry for their poor granny who was trying to keep them under control.

So now I am back home and I have finally had something to eat, and I am relaxing, watching some netflix but man to day has been rough on my joints… they are so achy and swollen… and apparently my achilles tendons want to join in properly rather just being the nagging pain I’ve had for the last month… fun times guys.

Knee bother and University

I have fluid on my left knee… That is not a good sign at all. Thankfully it isn’t too swollen or too painful and one of the benefits of doing Physiotherapy as a degree is that I have access to professional physiotherapists, some of whom have worked in the field of Rheumatology, and who can give me advice. BUT… and it is a big but, I need to feel comfortable about sharing my condition with the people I work with. I have a massive internal battle going on about how professional it is to share my health with my teachers, and although sometimes it is unavoidable, I really do try to keep my condition as separate from my working life as I can.

Only 2 of my lecturers know about my condition, and both times it took real guts to tell them. I am so used to hiding my condition from people, and avoiding talking about it. I am really good at shutting down questions if I don’t want to talk about it, and although I am always happy to answer questions about my condition to raise awareness, I always try to give a general answer rather than using what has happened to me as an example [although this predominately happens when I am talking to someone face to face, I am good at sharing things when I don’t have to see a person’s reaction, and I am also good at talking about issues with people who are going through the same things I am]… For instance I might tell of how people I know have faced some difficulties rather than saying exactly what I have been dealing with. However, since I have gauged the reactions of people as generally supportive I think that I might start coming out of my shell a bit when people ask me questions face to face.

The first lecturer I told happens to be the Head of the Physio department at my uni and was incredibly supportive. She told me that as long as I felt that I could cope with what was going on, she was totally fine with it. And as soon as I feel that I am not coping so well, that I should come and speak to her and we will get occupational health involved. She also told me to keep her informed about what is going on and she was genuinely caring towards me.  The second lecturer found out kind of by accident. As you all know I have had issues with the ligaments in my knees for well over a year now , approaching the year and a half mark, and I still haven’t had many answers about it. I still didn’t know if it was related to my autoimmune condition [although we have suspected it was]. We were doing a practical session on the knee and so I figured I would ask whether he knew what it was, and any exercises/stretches I could do to help them. Again, he was totally understanding and listened to me explain how I have no idea what happened but the ligaments [LCL and MCL] in my knees have been sore for well over a year and did he know anything that could help. The first thing that he asked me what if I have autoimmune arthritis, or a family history of RA… That hit me like a brick, I wasn’t expecting anything like that. He pretty much hit the nail on the head within 30 seconds of me asking the question… something that every other health care professional I have seen over the last 8 YEARS have only just been able to figure out. I explained to him about my diagnosis, and told him about the morning stiffness, which on that particular day was 3 hours, and asked that because it was most likely autoimmune related was there nothing we could do to treat it… My lecturer was then nice enough to give me a good 30 minutes of his time and explain all the different exercises that I could do to help different muscle groups in my upper legs so that we can reduce any patella mal-tracking and basically increase the strength of the muscles in my legs to try and reduce any problems I might get in the future. The only problem is that I haven’t been able to do the most beneficial exercises on my left leg because of my knee…

Which brings us back to the fluid on my knee. As part of the assessment that we were taught to do on knees we had to learn how to test for fluid on the knee… usually done by 2 special tests, one called the patella tap [where you brush the fluid down from the upper leg into the knee and tap on the patella, if the patella bounces back up then there is fluid in the knee, if not it means that the patella is resting against the femur where it should be] and the bulge sign, where you brush the fluid away from the inside of the knee then brush down the outside of the knee and if you see a bulge appear on the inside of the knee then there is fluid on the knee. [Note: there are other special tests but these are the ones we mainly focused on]. When we were practicing these in class mine were negative… no fluid in the knees! However the other day when we were practicing them for out exam, my right knee was negative [wooo!!!] but the poor left knee was positive… I had a positive patella tap in my knee [Note: we didn’t try the bulge test]. We repeated this a few times to check but it was definitely positive. On the bright side, at least I know what a positive patella tap looks like.

On Monday I will have been taking Plaquenil [AKA Hydroxychloroquine] for 13 weeks, I was told it should be working by the 12th week but that hasn’t really happened. My morning stiffness is bouncing around all over the place, from as little as 1 hour, all the way up to 6 hours… And I am getting stiff when I am sitting down too long. Most of my lecturers are 2 hours long and I can’t stay sitting for that long, it’s too painful. I have taken to leaving the lecture once an hour to “go to the toilet”, in other words to stretch my legs… but that means that I have to try and sit at the end of rows and nearer the front so not to disturb everyone… It’s difficult sometimes. A lot of my friend’s on instagram have been telling me not to give up on Plaquenil, as I was feeling quite disheartened that it wasn’t working as well as I had hoped. Some of them found that it took longer than 12 weeks for plaquenil to kick in, and other people found that when they came off it they found that it had been helping but it was a gradual improvement, so gradual that they hadn’t really realised until they came off of it. So I am hopeful that I am one of those people!

On Wednesday I am headed back down to my rheumatologist’s office to see a podiatrist who specialises in Rheumatology. The thought was that he could maybe help with new insoles to help with the achilles tendonitis which has been on-going for a good 3 or 4 months now, although thankfully it is quite mild right now. And then in March I see my Rheumy again and we decide where to go with the treatment.

Guest post: Heather – Lupy Teen

I apologise for the lack of posts recently. I have been crazy busy with exams and Uni and flares and I am moving flats on Wednesday, but I am glad to welcome Heather who has written the first guest post of 2015 on MyLungsMyLife! Heather is currently in the process of investigating if she has lupus or not and her story rigs true with me on so many levels. I found Heather’s blog [www.lupyteen.com] right after my appointment with my rheumatologist in December and I could relate so much that I felt like I was reading my own story.

​ “Chronic diseases are tough diagnoses to swallow. When you get one of those diagnoses it changes everything in your life in one way or another. I received an undifferentiated connective tissue disorder diagnosis about a year ago when I had just turned seventeen. It was a heavy load to try and sort out during what turned out to be one of the most stressful semesters of my life. I’m still not quite sure how I got through it all and I am thankful for all of the support I received from my teachers, my friends, and my family.

​My symptoms started presenting in my sophomore year of high school. I ended up severely fatigued and developed some cognitive dysfunction and had a really hard time with school. My junior year was going great, despite developing Raynaud’s in the fall, until February when I developed inflammatory arthritis. I was on a school trip to Costa Rica and when I washed my hands with cold water it triggered my Raynaud’s, which then triggered my first flare of inflammatory arthritis. When I got home from Costa Rica I was pretty much a lifeless lump for a week and I started taking Prednisone to try and get the inflammation under control. I ended up on the Prednisone for three months before I got everything under control and started taking Plaquenil. The rest of junior year was very difficult because I was learning to manage my symptoms and a full schedule at the same time. I had to stop going to Taekwondo for about four months and was having trouble getting all of my schoolwork done to keep my grades up.

​I made it through though, but not without a lot of crying, frustration, and support from my family and friends, and was able to have a pretty great summer. I volunteered at a summer camp, went camping in Acadia National Park, and participated in the Leadership camp at my Taekwondo studio. I also started writing my blog, at my mother’s suggestion, to see if it would help me cope with everything and so far it has. I still end up frustrated at times when I can’t do certain things or my symptoms flare up but I am learning to live with it and it even gave me the motivation to pursue a degree in microbiology and immunology in college.

​My only official diagnoses are Raynaud’s phenomenon, Inflammatory Arthritis, and Juvenile Idiopathic Arthritis. I haven’t gotten an official lupus diagnosis, but my mother has lupus and I fit most of the criteria but am missing a few key characteristics. As such, I am being watched for the manifestation of lupus and am being treated with Plaquenil and Adderall to manage my various symptoms.

​Autoimmune diseases are tricky to diagnose because of the variability and sporadic nature of the symptoms. My symptoms match up with the symptoms associated with lupus but I am missing some of the key markers, namely abnormal blood tests. The symptoms I experience are fairly mild and can be treated with only one or two medications. I get a lot of pain from the inflammation in my small joints (hands and feet) and the cartilage that connects my ribs to my sternum. This pain is usually low level unless I do something to increase the inflammation, such as chopping a lot of vegetables or lift heavy loads. Unfortunately, I cannot take ibuprofen or any other blood thinners so this pain is mostly managed with Plaquenil and Tylenol. I also experience fatigue that ranges from mild to quite severe and cognitive dysfunction (brain fog) that makes it difficult to function well at school sometimes. I spend a lot of time napping and am usually exhausted by the time I get home from school. I also get the malar rash, the most recognizable symptom of lupus, on my face that will flare up from time to time.

​I am fortunate to have a mild case of whichever autoimmune disease I have and to have access to treatment to manage my various symptoms. Despite my new physical limitations, I am still able to lead a fairly normal life. I have a boyfriend, I am working towards my black belt in Taekwondo, and I get together with my friends as often as my busy schedule allows. I have a 504 plan set up with my school that outlines any accommodations I need because of the autoimmune disease. It gives me extra time for tests or homework if I need it and lets me get the teacher’s notes if my arthritis keeps me from being able to write down my own notes. This has been very helpful when my symptoms flare up and I end up out of school for a couple days.

​I can’t say that it has been easy adjusting to my new limitations, in reality it has been the most difficult thing I have ever done. It changed everything about my life, some for better and some in a not so great way. I can no longer ride rollercoasters (the forces hurt my ribs and various joints), lay out in the sunshine, or go swimming without being paranoid about sun exposure. I have to be constantly careful to not schedule too many activities (school or otherwise) or else I will be burnt out for an entire week and may end up with a flare of my symptoms. I have cried about being unable to participate in a lot of normal teenage things and I have cried simply because I haven’t been able to handle everything and it all just ends up crashing down. The upside is that I always feel better after I let all my emotions out and find the silver linings in everything that was bothering me.

​This leads me to the most vital part of living with a chronic condition: your support system. Your support system is what catches you when everything catches up with you and pushes you over. For me this support system is my mother and my somewhat dry sense of humor. My mother has been diagnosed with lupus and is often in much worse shape than I am. Despite being sick she holds a full-time job, is also working on her black belt, and takes care of my brother and I. She understands what my symptoms feel like because she has experienced them herself and, as a nurse practitioner, she has a working medical mind that is just somehow comforting to me. She listens through all of my breakdowns and helps me work through whatever needs working through. I’m not sure I could have gotten through everything without her.

​My other main coping mechanism is humor. I absolutely love cracking jokes because it usually helps to lighten the mood. I joke a lot about having and autoimmune disease because it helps put distance between the social situation I am in and the limitations of my condition. I say things like, “At least I won’t get malaria!” when I get mosquito bites to poke fun at the fact that I take an antimalarial medication. Or if someone is concerned about me getting sick I usually end up saying something along the lines of, “Nah, my immune system is ready for any virus, bacteria, or even that cartilage in my toes”. I don’t change my medical condition by poking fun at it, but it does help me deal with the generally overwhelming nature of having a chronic disease.

​To wrap up I would like to thank you all for reading and thank Jenni for giving me the opportunity to write a guest post for her!”

As you can see Heather has had a difficult journey and it is easy for anyone with a chronic illness to relate. I know a lot of people who cope with their illness with humour and everyone needs a support system. Sometimes that is found in the form of your family and friends. Other times it is found on Facebook via support groups. Either way the importance lies in getting the support, not in the form of which the support takes.

I would like to thank Heather for taking the time to write her story and I would suggest that you all go and check out her blog!

This year is going to be a good year

First of all, HAPPY NEW YEAR GUYS!!! As if it is 2015 already! Last year has gone so fast, it’s kind of unnerving…

I celebrated New Year on 31st Dec 2014/1st Jan 2015 like most other people in the UK but I was having quite a rough time… I had been suffering with a lot of muscle weakness over the past few weeks which had got progressively worse to the point that the energy I needed to get out of bed, or even to stand up was so massive that I pretty much spent a lot of my day lying down and not moving out of my room. I was also having quite big problems with fatigue which contributed to me not getting very much done each day. I didn’t really know what was going on since I haven’t really experienced muscle weakness as one of the symptoms of my autoimmune disease before, but I did know that muscle weakness and fatigue are both symptoms of loads autoimmune diseases and considering my diagnosis is possibly one of four it was quite possible that the muscle weakness was a symptom of mine. I had all these thoughts going through my head… “This would be the 4th symptoms I have to fit the lupus criteria… maybe it is lupus?” “Is it the plaquenil?! Am I having a reaction?” and things like that… And then my Dad came down with a stomach bug, and then my brother, then my uncle and it went all through the family and then hit me…. I am thankful to say that I am over my stomach bug after loosing 6 pounds over the course of a week and a half, and I have more energy… And no more muscle weakness… Which suggests that it was this bug that was causing my symptoms in the first place. It is so difficult to identify exactly what is causing your symptoms when your body could be causing every symptom! Because of this stomach bug, my 2015 didn’t start off well so I decided that my new 2015 would start from the 3rd and I would leave my stomach bug, and muscle weakness back in 2014. So far it has worked well!

From the 1st I started doing my physio exercises which are essentially stretches that we hope will make me more flexible, or at the very least will mean that my muscle tightness won’t play such a significant role in the loss of movement I have at my joints. 7 days on and all I have noticed is that my muscles are sore… but physio is something that takes time and I am more than willing to work on it.

I also got my appointment through for my podiatry appointment which will be on the 18th February. I am hoping that the podiatrist will be able to work out whether my achilles tendonitis is inflammatory or mechanical and based on that will be able to treat me accordingly… I was checked for new insoles in the summer, and got 2 pairs then and since my feet haven’t grown I don’t see why I would need a new pair but it could be that my insoles just aren’t doing the trick, in which case it would be an easy fix. On the other hand it could be inflammatory and steroid injections might be needed, and if my Rheumy feels that my tendons are affected enough, a change of meds may be in order but we shall come to that bridge if that is the situation.

I next see my Rheumatologist in the middle of March and so far there isn’t an awful lot to report on the Plaquenil front. 7 weeks on and there hasn’t been all that much change… I have found that the ligaments in my left knee, especially my Medial Cruciate Ligament, have been swelling which makes my knee look way weird but my actual knee itself hasn’t been swelling as much as it was before. Don’t get me wrong, it still swells often, but I have been finding that if I do the some of the stuff that used to make it swell, it isn’t swelling as much. I wish the same could be said about my right ankle… it is just being a pain in the backside! It swells when it wants, it gets warm to touch, it wakes me up at night, I find it difficult comfortable, but then other times it doesn’t feel too bad. I just don’t understand it. Now I have been diagnosed with Raynaud’s I am reluctant to use ice treatments on my extremities so it is difficult to know what to do about it but I have found that if  raise it and support it well at night it isn’t as bad. This is definitely going to be a talking point at my next appointment, along with my ligament and tendon issues.

One thing that I forgot to mention to my Rheumy last time I saw her was that I STILL have costochondritis that is still quite painful despite high doses of Naproxen and Paracetamol. This has been going on for years now and I have accepted that it is one of those things that I am going to have to live with but I would prefer my Rheumy to know just in case it means something to her… The reason it took so long for me to be officially diagnosed with Raynaud’s was because I didn’t mention my feet getting really cold because I had just got used to it, and it was only when my Rheumy actually questioned me on it and then gave me all these guidelines about picking up cold things did I realise how serious it could be. I’m also going to ask whether my kidney function has been checked, not because I feel there is a problem but because I know that lupus and NSAIDs can mess with kidneys and since I only have one, I am not taking any risks when it comes to that. I haven’t had my kidney checked since I was a kid so I would rather be cautious and know everything is fine than worry that I could have missed something.

I am feeling quite good about 2015, I am no longer searching for a diagnosis and treatment. I feel that I am in more control of my health because I have a health care system that is now working with me, rather than not working at all. Even though my condition is not actually under control yet, I still feel good mentally because I feel that my doctor and I are on the same page and we are finally getting somewhere. This year is going to be a good year.

2014 in review

I got an email today showing the annual stats for this blog so I thought I would share it with you. Thank you to everyone who follows this blog!

Here’s an excerpt:

The concert hall at the Sydney Opera House holds 2,700 people. This blog was viewed about 10,000 times in 2014. If it were a concert at Sydney Opera House, it would take about 4 sold-out performances for that many people to see it.

Click here to see the complete report.