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!