Tag Archives: Blog

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!

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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!

Juvenile Arthritis Awareness – Christine’s video

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Happy half Birthday!

Well today is my blog’s half birthday. Yes, mylungsmylife has been around for 6 months now! So as a little present, I changed my blog theme, as you have probably already noticed 🙂

I’m kind of in shock how fast these past six months have flown. I have met so many new people through guest posts; Rachel, Lizzy, Becky, Lene and Nicole. And I have met many more amazing people over twitter and Facebook, who have written/are writing guest posts for me. And other inspirational people who have blogs and Facebook pages sharing their experiences with chronic illnesses, such as fibromyalgia, cystic fibrosis, diabetes (all types), stills disease, juvenile arthritis, rheumatoid arthritis and the list goes on and on.

6 months ago I didn’t know much about some chronic conditions such as Diabetes, but now with the help of friends on twitter I am well on my way to becoming a fake person with diabetes. (This is sort of a code word for a person who doesn’t have diabetes but knows a lot about it). I am hoping to get a few guest posts up from people with diabetes very soon.

6 months ago, I was 1 month into my first year at sixth form college, no I am 7 months in and I have already completed a quarter of my full A level, which is really scary. Last week, I went to a University fair which many of the main universities from the UK went to. So I now have a room full of Uni prospectuses and I am still no closer to knowing which Uni I am wanting to go to… But I have a little while longer to decide.

6 months ago I had only been officially diagnosed with asthma for 4 months. I am still in the process of learning which treatments work best for me and I have already found that 3 inhalers are not for me. I have found that some asthma medications make me wheeze more, so they are definitely out of the picture and I’ve found that I prefer to use DPIs (Dry hPowder Inhalers) basically because when my fingers are sore, I can still take my inhaler. I am still learning a lot about asthma, and I’m still spending a lot of time googling a lot of asthma related things to try and learn as much as I can about asthma, so that I can completely understand what my GP and asthma nurses are talking about, and so that I can understand the reasons behind why I am taking certain medications. But also so I can understand asthma as a whole, I want to be able to know as much as possible about why things happen and how medication work and what the mechanism behind asthma attacks and exacerbations is.

So that is a few of the things that I have experiences through having a blog and I am certainly going to continue blogging!