Tag Archives: guest post

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!

Guest post – Juvenile Arthritis through a mother’s eyes

[Editors note, I would like to thank Jess in advance for writing this superb guest post for MyLungsMyLife. I have been following Imogen’s journey on Facebook and I really can’t describe how much of an inspiration Imogen is. It is an honour to share her story.]

My name is Jess. My daughter Imogen has Polyarticular Juvenile Idiopathic Arthritis. She was diagnosed in February this year, after 3 of her joints swelled up. We were extremely lucky in the fact that we were diagnosed quickly. Although Imogen had probably had it for months before we saw the signs. Imogen was diagnosed just before her third birthday.
Since diagnosis we have endured many hospital visits and numerous treatments including:

– IV & Oral Steroids – great for a quick “fix” but horrific side effects (temper tantrums, not sleeping, behavior difficulties)
– Methotrexate – Weekly injection of a chemotherapy drug
– Joint Injections under General Anaesthetic – (We’ve done 3 lots. Last time she had over 20 injections)
– Anti Inflammatories by the bucket load (Ibuprofen, then moving onto Naproxen)
– Physio and Hydrotherapy – (Imogen hated Hydro, but loves her Physiotherapist)

We are now waiting on a new medication called Enbrel which we are hoping will give some long term relief to Imogen and her poorly joints.
Throughout all of this Imogen remains a happy, smily, carefree child. She never complains that she is in pain, never complains about spending time in hospital and tries as hard as she can to just carry on.

At the moment she has about 15 joints that are active, even after steroid injections into the joints.

I feel that there is not enough support out there for parents with children who have arthritis. I remember feeling so alone when Imogen was first diagnosed as I didn’t know anyone else whose child had it. Although after a lot of google searches I found a few places to vent my frustrations!
I have now set up a website http://imogensarthritisjour.wix.com/ourarthritisjourney and also a forum
http://ourarthritisjourney.proboards.com/ so that there is a place for parents and the young sufferers themselves to come and discuss their experiences and reach out for support if they need it.

Arthritis has changed our lives now, and it’s hard to go forwards not knowing what the future holds for my daughter, but there is one thing that I am totally sure of. Imogen will not have less of a life in any way shape or form. Yes it may be different from her friends, but her father and I will make sure she misses out on none of the childhood memories that need to be experienced! She has already done sports day this year and also her first Christmas play!

I often say to people that my daughter is my hero. To go on smiling when she must be in so much pain, it’s unbelieveable, yet she does it daily.

So yes my daughter has arthritis, but the arthritis certainly does not have her! 🙂

Join me at D, CF and Me

Earlier today I was honoured to be asked by Shannon if I could write a guest post for her blog. She asked if I could base the post on my bad joints and my asthma which I have done! So join me at D, CF and Me to help raise awareness about asthma and juvenile arthritis!
Click HERE to see the post!

Guest Post: Shannon, living with Cystic Fibrosis and CF related Diabetes

[editors note: I would like to welcome Shannon to MylungsMyLife. I met Shannon over twitter a few months ago, and I have been talking to her a lot about how CF (AKA cystic fibrosis) and Diabetes, and since this week is Cystic Fibrosis Awareness week, it seemed like a good time to ask Shannon if she would like to go a guest post for me. So thank you Shannon for writing this post for me!]

Hi, I’m Shannon. I am 13 years old. I may seem a normal teenager right?

20130625-112121.jpg

Well, I’m not really… I have Cystic Fibrosis and Diabetes. This week it’s Cystic Fibrosis Awareness week in the UK (24-30 June).

20130625-112202.jpg

Cystic Fibrosis(CF) is a genetic disease, it affects your respiratory and digestive systems the most. People w/CF take loads of medications, nebulisers and some use the vest… Most CFers have one-three stays in hospital a year, my mum says I’m going in for a MOT!

20130625-112344.jpg

20130625-112434.jpg

There is hardly any awareness for CF. This needs to change! CF is a life threatening disease, but honestly did you know about it before I wrote this? You might have heard of Dalton Dingus? [note: remember the young lad who I blogged about at the start of they year? Who sadly passed away at the age of 9? I wrote about Dalton here and here] Or (Peter Andre fans should know) maybe Nadine Blake? No? Thought not! This is why we need awareness, I asked all my form class. “Did you know about Cystic Fibrosis before you met me?” In my class there is 27 people in my class, all of them said exactly the same, they said “No.”
I wrote a letter to my head teacher to see if we could raise money/awareness for CF in school, still waiting for my reply!

Some people say things like;
“Shouldn’t you be in hospital?”
“I’d die if I had to take that many tablets!”
“Is it contagious?!”
“But, you don’t look sick!”
“You’re just tired.”
“You’re a druggie!”
“You have Cystic Fibrosis? Why aren’t you locked up?!”
“Shouldn’t you be dead by now?”
“You’re just attention seeking.”
“You’re anorexic!”
Yes, I’ve had them all said to me. 😞

20130625-112642.jpg

Organ donation is very important with CF. Many people w/CF need ‘new lungs’. People don’t realise how important organ donation is! Other people without CF need organs so you could be helping anyone! So please sign up to the organ donation register!

20130625-112808.jpg

How you know you have Cystic Fibrosis:

LOL!
Ps Ceftaz [note: this is an antibiotic used to treat Pseudomonas aeruginosa, which is a bacterial infection which can be found in the lungs of people with CF] does smell like cat pee! 😊

20130625-113350.jpg

20130625-113311.jpg

I was diagnosed at 4 weeks old, in 1999. I wouldn’t eat or drink. My mum and dad took me back to the hospital, I had some tests and I was diagnosed, simple right? Not really. My mum and dad had to schedule all work/play around me. I had a huge, loud nebuliser and loads of medication (liquid form, of course!), as a child I hated the fluclox [note: fluclox is short for flucloxacillin, another antibiotic] I had to have, apparently it was strawberry flavour, erm no. Now I have them in tablets.

Using social networks, (Facebook, Twitter etc) I have been part of the DOC – Diabetes Online Community, and CFOC-(just guessing here, it doesn’t actually have a name:)) Cystic Fibrosis Online Community. The following people have helped me-
Twitter-
@pinger_genguin (Jenni – MyLungsMyLife)
@glucosegirly
@theGBDOC
@Navy_Kitty
@grumpy_pumper
@ninjabetic1
@DiabetesUKCymru
@DiabetesUK
Give them a follow:)

Thank you for reading,

@ShannonFurbee12 (Shannon- D, CF and Me.)
dcfandme.blogspot.co.uk

A chronic illness is a chronic illness – guest post by Elizabeth

[Elizabeth is an amazing person who has put up with so much pain since a young age but has come out the other end still smiling. Elizabeth blogs about her life with Psoriatic Arthritis here! Which I would really suggest you look at… One of my favourite arthritis blogs of all time! Thanks for writing a guest post for me Elizabeth!]

A chronic illness is a chronic illness. There are all sorts of them in the world, but they are all united by one word: Chronic. My dictionary defines the word ‘chronic’ as an adjective that means continuing for a long time (especially of a disease or something bad). And while using this specific dictionary, I decided to look up the term ‘chronic illness.’ What I found was a large list of diseases. Whilst the list was rather impressive, what impressed me the most was that one term united so many different things a person can be affected by. That made me think about all the different people who were just group together by one word. I’m unsure of what anyone else thinks about this, but personally I took it as a message that people with chronic illnesses should meet one another and learn about each other and their diseases (since they’re two separate things). The more we talk and learn, the more powerful we are.

My name is Elizabeth and I have had juvenile psoriatic arthritis since I was two. Rest assured, I have had it a very long time. My hips, knees, ankles, jaw and spine are affected by my arthritis. Psoriatic arthritis is simply a form of arthritis that is very similar to rheumatoid arthritis and affects people with psoriasis. Even though most people with PsA tend to have skin psoaisis, I don’t. I have nail psoriasis and a family history of skin psoriasis. My mum has severe psoriasis on her legs, which flare and become very painful. A lot of people fail to realise how horrible psoraisis is on it’s own, forget adding arthritis.

Due to having it at such a young age, I walked around believing pain was normal. I had a flare that required me to stay in hospital for a week when I was eight and that’s when I learnt people aren’t supposed to be in pain or have stiff joints. Most doctors didn’t take my mum or I seriously when we claimed I had pain. One doctor even concluded my pain to be a sports injury. ‘For what sport? I can barely get up stairs some days!’ It wasn’t until I was about twelve when I was referred to a paediatric hospital’s rheumatology ward. Instantly my life got flipped upside down: I was being seen every three or four weeks (sometimes more), being tested for everything on the face of the earth and became a little ‘lab rat.’ But a very hopeful lab rat.

I have since been on numerous medicines, spent hours doing physical therapy, missed at least 30 days of school since I was twelve for doctor’s appointments alone, and have ‘lost’ months from being very ill from medicine side effects and Psoriatic arthritis itself. However, I gained a lot too. I learnt a lot about sympathy and empathy, met tons of great people dealing with all sorts of chronic illnesses, found so much strength I didn’t even know I had, and am probably a better person today. At the moment, I take Enbrel (an injection I give myself twice a week)- a medicine that finally has given me relief and results. Even though I’m still limited, I’m finding life is starting to get easier.

As well as gaining all those wonderful things, I created a blog. That blog has been there through some miserable times, as well as very happy times. The only thing I wish is that it benefits others as much as it has benefited me. Arthritis has even found my true path in life: Art. I found that one of the best ways to cope with being sick a lot was through art. Whether it was making it or viewing it, art has always helped me feel better. Now, I encourage other people to do that same (if they’re able to). Many people have the mindset ‘seeing is believing,’ so why not use pictures and other art forms to help convey how we feel?

The Distance to Here: Five Years Later (guest post by Kerri)

20130425-084337.jpg

[note: Kerri is one of the most knowledgable person I know! She knows so much about asthma, you can ask her anything, if she doesn’t know the answer off the top of her head, I can guarantee you that she will find the answer really quickly. Kerri also writes my favourite blog (see the bottom of this post) which I have been following for years! Love the blog Kerri!]

I’m coming up on five years since my asthma diagnosis. So here I am on MyLungsMyLife, taking a step back and reflecting on that journey, and what transpired within that journey over the distance to here . . . to get me where I am now. (If you know me, you’ll know I am constantly filled with quotes from songs and am heavily influenced by music. If you know the band Live, you’ll know that I ripped off The Distance to Here from their album of the same name.)

At this point, I feel the diagnosis journey that at one point defined so much of my asthma story is nearly inconsequential—it is more about the now, than the then. My asthma story currently is less about me, and more about creating change. An origin story is an origin story, and though it may be life altering, it is not life ending, nor does it have to be life defining. Asthma has helped shape the choices I have made, and has, I believe, made me more compassionate and more willing to modify my own perceptions with the hope of altering the perceptions of those around me.

At sixteen, it is easy to feel invincible. It’s also easy to feel invincible five years later at twenty-one (it’s easier yet to cue up 21 and Invincible by Something Corporate: “We’re 21 and invincible / Can’t wait to screw this up / And I’m in power for the hour / I guess today’s gonna blow us away.”). It’s easy to brush off that something may be wrong following a choir performance where your lungs feel tight. It’s easy to accept a bronchitis diagnosis and take a couple rounds of antibiotics. It’s not easy when those don’t work, and then spend the next six weeks, including four days in Chicago, not feeling well. It’s not so easy to return to the doctor with no improvement and tell him “This is not bronchitis, and we need to get this under control.” It’s not easy to spend six months taking Ventolin multiple times a day because it is the only option available and the waiting to acquire a family doctor continues.

After I finally got a family doctor, it took three specialists, multiple medications, and a lot of frustration and perseverance, as well as support from the online community to get my asthma into something resembling control. I currently take three maintenance inhalers, use a Ventolin inhaler when needed, and have access to both a nebulizer and prednisone for when things get sticky (there are few things I hate more than prednisone, but I know when it’s time to pull out the big guns)—I also have rhinitis, for which I take nasal steroids (and am supposed to do saline rinses, but hey, I never claimed to be perfect).

The distance to here: it’s been a long time coming. On April 28th, 2013, I’ll have hit my 1826th day living with asthma. Five years of inhalers, nebs and frustrations may be among the negatives, but they in no way can cover the goodness that has also crossed my path. Asthma has also meant five years of friends I’d have never met without this disease; five years of learning more about my body and myself; five years of discovery—in myself and of the world, and five years of learning—five years and many things that would not have happened had I not had asthma.

As I write this 1821 days after my diagnosis, I perceive so much differently than I ever thought I would. I know that I am in control of my perceptions, even if I am not in control of my circumstances. I know that I make the choice to see my asthma as only a speed bump, but not a roadblock. I have changed so much, and mostly for the better—I am more in touch with my own body, and I do my best to keep it healthy instead of taking it for granted. I started exercising more regularly within a year of my diagnosis, and while it is in no way easy, it is so worth it. The perceptions I have that changed since my asthma diagnosis launched me into a couple of my current major pursuits: majoring in Kinesiology and Applied Health, volunteering as a member of the Asthma Society of Canada’s National Asthma Patient Alliance Executive Committee (try saying that five times fast!). This cohesion has helped me comprehend a bit better about the interaction between my body, mind, emotions, asthma, and the rest of the chaos that creates life, enabling me to understand not only myself better, but also understand those around me better, meet them where they’re at to help them go the distance . . . and realize the distance to here that we have all encountered in our own journeys . . . to be in charge of our own realities.

Life’s not perfect after diagnosis—but really, it wasn’t perfect before either. Asthma may be incurable, but we are every bit as resilient as our circumstances attempt to be. Learn all you can, live passionately, and don’t ever regret a single moment . . . because it is all a part of what is helping you reach where you are supposed to be. The distance to here is not any specific place . . . it is about owning the current moment: every aspect of it.

Kerri is a twenty-one year-old university student with a passion for asthma education, adapted physical activity, patient empowerment, wellness, and taking ownership of chronic disease with special interest in adolescent populations. Inventor of the term “badassmatic”, she fully believes that “perspective is crucial, positivity is essential, and ignorance is a curable disease”.
Kerri blogs at Kerri on the Prairies, can be found on Twitter at @__kerri (with two underscores to be complicated), and via her Facebook fan page.

Guest post: Living with Juvenile arthritis by Lene Andersen

[Editors note: I’m really happy to say that I have finally found someone willing to do a guest post on their life with Juvenile Arthritis. Lene is an arthritis advocate who has her own blog and she is now also a published author of a book detailing life with arthritis. Lene is a super knowledgeable lady who has been dealing with this terrible disease since she was 4. I am honored to have her as a guest blogger]

Lene Andersen

[Here is a picture of Lene. It helps you to put a face to the guest blogger]

The first time I felt the pain of juvenile arthritis (JA), I was 4 years old. I remember helping my father paint the living room wall in our new house. I remember the grinding pain in my right wrist afterwards. For years, my JA was limited to one wrist and one ankle, although that makes it sound not too bad. It was pretty bad for a child — there was a lot of hospital stays, a lot of missed school because of fevers and flares and a lot of bullying from schoolmates. When puberty hit, my JA went supersonic. At that time, active JA meant living in hospitals and that’s what I did for the next 4 years. At 14, my hips fused so I couldn’t sit up and I spent the next two years lying in bed waiting for custom-made hip replacement. At 16, I had both hips replaced, got a power wheelchair and went home to live my life.

Juvenile arthritis is an umbrella term for a number of different types of autoimmune diseases that affect children. In autoimmune diseases, the immune system malfunctions and attacks various systems in the body, such as joints, tendons, organs and connective tissue, Juvenile idiopathic arthritis (JIA) is the most common form of JA and was previously known as juvenile rheumatoid arthritis. JIA causes inflammation in for instance the synovial lining of the joints, potentially eroding the tissue. When that happens, deformities and disability may result. The term idiopathic means “of unknown origin” – we don’t know what causes JA, although genetic factors do play a role. Juvenile arthritis affect more girls than boys. Approximately one in 1,000 children has JA. That’s about 12,000 kids in the UK.

It’s important for kids with JA to be diagnosed early so treatment can start. Two types of medications are used for JA: nonsteroidal anti-inflammatory drugs (NSAIDs) and medications that suppress the disease, such as disease modifying antirheumatic drugs (DMARDs) and the Biologics. Currently, methotrexate is the “gold standard” of treatment. Methotrexate is a chemotherapy drug, but when used for JA, is used in much smaller doses than when it is used to treat cancer. The goal of treatment is to stop inflammation to prevent damage and disability. This is why it’s important to take medication — it protects your body against the effects of the disease. Other treatments include physiotherapy, occupational therapy and psychological support. It’s important that children with JA lead as normal a life as possible.

I was a child with JIA during the 1960s and 70s, which makes me older than dirt. It also makes me a living archaeological example (if you will) of what happened before medication. When I was a child, we were treated with aspirin and physiotherapy and that was about it. Occasionally, they tried gold salt treatments, but it worked only for a few. The lack of treatment meant that it was almost inevitable that a child with JA would end up using wheelchair. That hardly happens now.

There are medications now. Actual treatments that work, helping kids with JA go into remission and lead normal lives. Well, very close to normal — you still have to take the meds and pay attention to your treatment so you protect your future. Sometimes, the disease pops up its head again and your life gets sidetracked for a while and some kids don’t respond as well to medications as others. But overall, the reality for kids with JA now is far beyond what it was when I was a child. There is so much hope for the future for children with JA and I can’t wait to see what will be possible!

For more information about juvenile arthritis in the UK, visit the websites of Arthritis Care and Children’s Chronic Arthritis Association.

Lene Andersen is the author of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain. She is the Community Leader of HealthCentral.com’s rheumatoid arthritis site, the, director of Community Outreach for Show Us Your Hands! and the author of the award-winning blog The Seated View. Her book is available in e-book format on Amazon (US, UK and Canada) and WHSmith. A paperback edition will be forthcoming in the Spring.

[editors note: I would like to thank Lene for sharing her experiences with JA… and I just wanted to add that I will soon be the owner of Lene’s book just as soon as it comes into my local WHSmith]