13. Regarding working and career: I am currently work disabled but I am in the process of setting up my own small craft business so I can work from home around the pain and side effects
14. People would be surprised to know: that I take a low dose chemo drug once a week for the treatment of rheumatoid arthritis
15. The hardest thing to accept about my new reality has been: missing out on so many precious moments with friends and family because I am too exhausted or sore, I'm missing out on the best years of my life but it just makes me appreciate and cherish the times when I am able to go out and have a good time so much more.
16. Something I never thought I could do with my illness that I did was: start two blogs!
17. The commercials about my illness: annoy me because they associate arthritis as be an old persons disease, young people and children have arthritis too!
18. Something I really miss doing since being diagnosed is: going for long runs
19. It was really hard to have to give up: studying Early Childhood Education- the career of my dreams
20. A new hobby I have taken up since my diagnosis is: blogging, scrapbooking, card making and nail art
21. If I could have one day of being normal I would: go for a long run on the beach
22. My illness has taught me: not to take anything for granted and not to worry about my life, to trust in God's plan
23. Want to know a secret? One thing people say that gets under my skin is: "you're looking well, are you feeling better?" Yes I look good, no I'm still sick- it's CHRONIC people!!
24. But I love it when people: say I can't imagine how difficult that must be. You are doing a great job. Is there anything I can do to help?"
25. My favourite motto, scripture, quote that gets me through tough times is: those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. Isaiah 40:31
26. When someone is diagnosed I'd like to tell them: don't be too hard on yourself. Allow yourself to grieve your former self but remember that who you are goes way beyond what you can and cannot do. Try not to focus on what you are no longer able to do but what it is still possible for you to do.
27. Something that has surprised me about living with an illness is: just how many people judge you based on how you look
28. The nicest thing someone did for me when I wasn't feeling well was: send me an encouraging book with "thinking of you" written on the inside
29. I'm involved with invisible illness week because: I want to raise awareness about invisible diseases. Our pain may be invisible but we are not
30. The fact that you read this makes me feel: supported. The fact that you took time out to read this and care enough to be informed is appreciated- thank you!
Find out more about National Invisible Chronic Illness Awareness Week and the 5 day free virtual conference September 13-19, 2010 at http://www.invisibleillness.com/
Australian Institute of Health and Wellfare Australian General Practice Statistics and Classification Centre. 2005-2006
Lisa Copen's chronic illness tips- 263 ways to do more than just get by is a free e-book available to download when you sign up for daily updates. Visit www.invisibleillness.com
- People with illness are young! 60% are between the ages of 18 and 64 (a)
- Depression is 15-20% higher for the chronically ill than for the average person (a)
- In 2006-2007, arthritis, diabetes and depression were chronic conditions commonly managed at GP consultations (b)
- In 2004-2005 people with chronic disease were less likely to be employed full time, and more likely to be unemployed, than those without chronic disease (Australia and New Zealand Health Policy)
- Invisible illness includes autism, bulimia, migraine pain, arthritis, bi-polar disorder and depression (a)
- The significance of ones faith has shown to help one handle a stressful medical event better (a)
- Over half of the chronically ill say the worst thing someone can say is "you look great" (a)
- "Chronic pain can't simply be fixed by taking a pill"- Professor Stephen Gibson, President of the Australian pain society (c)
- "Because pain often shows no physical signs, people including health professionals will often not believe sufferers are in pain which is one of the reasons they are at such high risk of depression, anxiety, social isolation and relationship breakdown"- Coralie Wales, President of Chronic Pain Australia (c)
After fighting and accepting fibromyalgia as apart of my life for three years I had to make extremely difficult emotional adjustments now that it was in remission- fibromyalgia no longer ruled my life and no longer would it dictate what I could or couldn't do. Fibromyalgia was history, it no longer had a hold on my life and with the hope and faith that my joint pain would also fade into the past, I was ready to get on with my life. I started making plans, I started dreaming again. I woke up every morning with the hope that one day soon I would be able to wake up and continue living my old life. I went to sleep with the hope that one morning I would wake up with no pain. This week that hope was shattered.
I saw a different rheumatologist while mine was away who gave me a very different opinion indeed. He confirmed that it is highly likely that I have rheumatoid arthritis, I wouldn't be taking medications used in the treatment of rheumatoid arthritis if they were not convinced that it was what I have, but what he also said shocked me. He said that I still have fibromyalgia. It never left. At first I thought he was a complete moron who had no idea what he was talking about but as he explained why I began to understand and somewhat agree with him. He stated that rheumatoid arthritis only accounts for 5% of my pain, there is no doubt about that but the other 95% is fibromyalgia pain amplifying the joint pain. The predinsolone trial as I suspected should have worked and the reason why I am not responding is because of the fibromyalgia pain. The condition involves hypersensitivity in the nervous system that amplifies pain (I'll explain more about this later). Therefore I am feeling more pain than what I should be. As I'm only showing early signs of rheumatoid arthritis with no signs of swollen joints, it doesn't explain why I am so disabled by it, and I totally agree. I should be able to manage work, so it is the fibromyalgia that is causing strife. As my arthritis isn't bad enough it doesn't warrant stronger drugs. What I don't get though is how do I still have fibromyalgia if it is not affecting my muscles as much? According to the rheumy that I saw the other day, my fibromyalgia has moved from my muscles into my joints. I'm devastated. I got my hopes up thinking that I would get stronger drugs that would help me to live a better life and here I am being told that my fibromyalgia never left. If it was just arthritis that I had, it could be treated but fibromyalgia is very difficult to treat. I was advised to go back on treatment for fibromyalgia which makes me feel miserable and fatigued and basically told to live with and find alternative ways of coping with the pain. It does make sense that if my arthritis is causing fibromyalgia that I would still have it. According to suspected causes for fibromyalgia, rheumatoid arthritis is one of them. It is very common for them to go hand in hand.
What I am finding incredibly hard to understand is why my first trial of prednisolone a few years ago worked brilliantly and as I thought about it I realised that I had fibromyalgia back then and the medication I was on helped managed the pain to an extent, therefore I noticed the improvement in my joint pain as I wasn't distracted by the fibromyalgia pain. Are you confused yet?! Welcome to my world! So now I am wondering if I get the fibromyalgia pain to a manageable level and tried the prednisolone again would my rheumatologist give me the stronger drugs like she said she would like too? My next appointment is going to be an exciting one. Two rheumatologist's discussing (that's a polite way of putting it, lets use 'fighting' I like that visual much more) how I should actually be treated and what my diagnosis/prognosis is.