So it seems the time has come for some introductions, and today instead of choosing just one of the prompts I have decided to try my hand at both. So here goes:
- Introduce your condition(s) to other Health Activists. What are 5 things you want them to know about your condition/your activism?
So I thought I might do this list style, in order to try to make it as clear as possible, seeing as I am diagnosed with quite a few things, and more seem to want to join the party every other day.
- I have Enthesitis Related Arthritis (A form of Ankylosing Spondylitis), which since I am thought to have had it since at least the age of 8, can also be called Polyarticular (meaning more than 5 joints involved) JIA. Which is Juvenile Idiopathic Arthritis. Ankylosing Spondylitis for those of you who don’t know is an autoimmune disease that is primarily associated with arthritis of the spine. Although it can affect the ribs, neck, hips, Achilles tendon, due to the involvement of enthesitis. Confused yet?
- I have Raynaud’s Phenomenon. Sometimes also called Raynaud’s syndrome or Raynaud’s disease, but I like Raynaud’s phenomenon, makes it sound a bit more mysterious (and in my mind fun). This affects the small veins in my hands, causing them to constrict or dilate with even slight changes in temperature. So if I go from the warmth into the cold, my hand and feet (some peoples tongues and even noses are involved) turn white or even purple. Which for me is often accompanied by some pain or tingling in my hands, and fingers especially.
- I have IBS (Irritable Bowel Syndrome), which is a pain in the butt, if you don’t mind me saying. Some foods make my symptoms from this worse. I have therefore had to cut gluten, dairy, (should cut sugar), and potatoes from my diet. Although to be honest I cheat sometimes, when I really really want something. I have also learnt to bake and cook without these ingredients, so that I can still enjoy things like cake or cookies. Because honestly who can live without a good choc chip cookie?
- I also have mild Sjogren’s. So I experience dry eyes, dry mouth and nose. This is because my glands that produce tears and saliva are affected, and therefore produce lesser amounts, and in some cases they can be totally damaged and therefore unable to produce any saliva or tears. I find it often rather irritating to have my mouth feel like sand paper, and my tongue sometimes sticks to the roof of my mouth. This autoimmune disease, can often accompany other immune-system disorders, like mine, and is said to develop in women over forty. It must be just my luck I got it at 18. Guess I’m right up there in the medical lottery.
- I also was told today that I have TMD, Temporomandibular Disorders. Which is when your jaw joint is affected, and mine seems to be due to arthritis and other factors, such as disk disfunction. This comes with the added bonus of making me feel like I have a constant double ear infection
- I also have systemic symptoms, which at the moment they are not sure what is causing them. I will tell you what it is, if I ever find out.
So lets see the five things I would want someone to know about my diseases, as this will turn into a thesis if I write 5 four each of them:
- Don’t judge a book by its cover. An old saying, that many of us forget about when we spend our lives darting around by bees. Don’t judge a book by its cover, and don’t judge me by mine. I might look well, happy, have a smile on my face, but that doesn’t mean I am fine. It doesn’t mean I’m better. It just means I am coping, or trying to.
- Autoimmune arthritis is not the same as oesteo-arthritis. Autoimmune arthritis is because my body has been taken over by aliens (or at least I like to think that, as it makes me laugh). My bodies immune system has decided to attack itself. It attacks my joints AND my organs. It can be present in anyone of any age, meaning kids get it too, yes even babies. Where as oesteo-arthritis is from wear and tear, which is why it is seen most prevalently in elderly people.
- Having a chronic illness doesn’t mean that your, or my, life is over. Yes it means adjustments. Yes there are sacrifices to make, things you can no longer do. But there will always be something else that you can do. Something else that will bring you joy, and a sense of accomplishment. If you choose to put one step forward everyday. If you stop and smell the roses, and appreciate the little things. You will find that there is more to life, hell more to you, than your chronic illness. But you have to make the choice to do it, to keep going. No-one else can do it for you.
- Speak out. Don’t be afraid to tell your family/your friend/maybe even your employer that you have a chronic illness. Inform them about what it is, what it entails, and how it affects you. So that they can better understand. Better adjust to it, be better equipped to help you. Ask for help, don’t let your pride get in the way. Telling people and being open to asking and receiving help, was one of the best decisions I made in this process. It’s hard to man this ship alone.
- Research, research, research. Knowledge really is power. If you know about your disease, and what treatments are out there, you can be an active participant in your health care. Something that I think is vitally important. It’s your disease, your body, you have to live with it, so why shouldn’t you be involved in the decisions that affect you?
- Share links to 3-5 of your old posts (or posts from other Health Activists!) that you think will help the newly diagnosed.
Ok so here goes. Hopefully this prompt will be a bit shorter than the last. As my blog is new, and you can always look through it yourself, I decided to give five links to posts that I enjoyed on other blogs.
- Finding Dr. Right, on Chronic Curve
- This is for all of us going into university: College and Chronic Illness, On Chronic Curve
- Ways to live with chronic illness, laced with a humour. I give you: Surviving Arthritis, on The Kid With Arthritis
- The Yin and Yang of Arthritis Awareness, by JIA mom
- Tips for managing your RA treatment, this can post can also be applied to many other Autoimmune Diseases, and Chronic Illness. It’s from RA Warrior.
Hope you enjoyed this, and found it helpful, and not tooooooo long.