Wednesday, March 27, 2013

Keeping the disease from taking over. (Blog Carnival Post)

I've been thinking about this a lot since Kelly brought up this topic. I'm writing this post as part of a blog carnival for her website at Rheumatoid Arthritis Warrior.  Over the years my coping skills have changed when dealing with having first one disease and now multiples.

Living with RA, Sjogren's, Raynauds and now Lupus, on top of Migraines, GERD and various other issues is a daunting task. You wake up each day (providing you have slept at all) not knowing what the next challenge is going to be. Can I get out of bed? Can I walk? What parts will cooperate today? You get up because you have to, the world goes on with or without you. You put on your brave face. (I have perfected mine) and get on with the day.

The question is how do you keep the disease from taking over? For me, the answer has changed over the years and changes on a daily basis. I can't plan anything since I don't know how I will be feeling. We say  "Yes" to family occasions or we may buy tickets to attend a concert or whatever the case may be. All of this comes with the added words "it depends on how I'm feeling."

Part of not letting the disease take over is taking care of myself, learning my limits, resting when I need to, drinking enough water and taking my medication on a regular basis. I have had to learn to ask for help (that has been tough for me) I'm very stubborn. I think if you take a look at many other people who blog about RA, Lupus etc, you will find this is a common theme.  It took me almost 25 years to get to this point, but hey at least I'm here now. I've learned to conserve my energy for things that matter the most to me like spending time with my husband, my children, grandchildren, taking some time to enjoy life. Recent events in my life reminded me life is short and a wise women in my life told me "it's your time to dance."

When I was first diagnosed I didn't have time to think about being sick, I was still working and a young mother,  it was a difficult time for me, I was exhausted physically and emotionally. I made it through each day because I had to, one day I will write more on that. I had to stop working outside of the home at least 10 years ago when my health went into a downhill spiral and I had one surgery after another.

Nowadays, I keep busy online with my blog, reading other peoples blogs. I have come to love doing that and met many great people. I do what I can to advocate for Autoimmune Arthritis/Disease and I stay updated on the latest research and treatments. I play games on Facebook or read posts on Twitter when I get overwhelmed, sometimes the last thing I want to think about or read about is illnesses. I do things that keep me occupied and that I enjoy. Music is another distraction for me, it can change my mood in seconds. 

When the weather heats up,we go on day trips or just sit outside and enjoy the warm weather. I feel so much better in the summertime, winter is a bad time for those of is in cold climates with Autoimmune Arthritis/Disease.




I know I have said this before but I will continue to say, I have these diseases they do not have me. No matter how sick I get I will continue to find new ways to live my life each day. I have done it for 25 years and will continue for the next 25 plus.



14 comments:

  1. Thank you for sharing, it is inspiring for people who live with and dabilitating disease, even if it isn't one of the ones you suffer from.

    I wonder - as I have seen this with friends of mine that have come down with illnesses over the years - did you have a period where people thought you were 'giving excuses' and not truly ill? What did you do to get through that with a positive attitude?

    & thank you for visiting my blog, I appreciate it - and I look forward to the posts you have to come.

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  2. Thanks for your kind comment. I really appreciate it :)
    To answer your question, I still have people in my life that treat me like that. I have just learned to ignore it and focus on myself. At first it bothered me, sometimes I got upset, then I got angry, then eventually I realized the people who were doing that were not worth it. They were not part of my daily life. I have to take care of me first, my husband and the people closest to me see what I go through everyday. My doctors know, (I have several.) Sorry I went on so long, I should write a post on this one day too.

    I'm looking forward to reading more on your blog as well, I hope you have a great weekend!

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  3. Aloha! :-) New follower from the blog hop! You have a lovely blog and I'm happy to follow. :-)

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    1. Thank you so much, I'm following you blog too. I love your makeup tips you are amazing at it!

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  4. Your experience is so much like mine in that it started when I was a young mother of two. It's also a blessing to have a ton of curiousity, though I have been accused of being one sided and way too concerned about health and health related topics

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    1. I don't know how we can't be concerned with health related topics, we live with it everyday. I think it's a healthy way to deal with it. It's better to be educated about out disease than blindly take every medication prescribed to us with no thought on what could happen, or never to research on developments in upcoming treatments. That's called optimism in my opinion. Keep on doing what you're doing, you know what the right thing for you is. I hope you have found the right doctor, and the right treatment for you. thanks for stopping by, I hope you come by again!

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  5. Thanks for letting us into your life. I am glad you have a wonderful attitude, it is necessary I think when you have a chronic illness. At the same time, some days (at least for me) a positive attitude can be hard to find. Another side effect of this disease. I'm finding that when I start feeling down, sometimes just coming to the RA Warrior site and reading what others are going through helps tremendously. Keep on writing and keep on keepin' on. It's what we do, right? I enjoyed reading your blog.

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    1. Thanks for taking the time to read it and comment on it Marti. I appreciate it. There have been many days when my attitude hasn't been as positive, I'm sure there will continue to be more ahead. I'm just learning different ways to cope with the emotions, it seems writing this blog has helped me a lot. Kelly's blog was the first RA blog I found when I went looking for others like me. Her site has been a great help to me, she is an amazing person. Now I'm writing a book :) I will keep on, as long as I'm kickin I'll keep kickin back. I hope you stop by again! Nice to "meet" you!

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  6. It's amazing what we can do when we're young mothers, I know!! I'm sorry to hear you had a bad season with a lot of surgery involved. Thank goodness that bad is just a season, yes?

    Loving your positives here!! Visiting today from Peacock Strut.

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    1. Thank you for your kind comment! Thanks also for visiting, I think I have checked out your site before but I will do so again. Have a great weekend!

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  7. Such an inspiring story! I know the struggles of living with a chronic illness, I have a rare genetic heart condition. You're story inspires me!

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    1. Thank you so much, I'm sorry to hear you are dealing with your own struggles. I think all of us no matter what illness are "warriors" to fight through every day the best we can. SO I find you to be an inspiration as well! Thanks for taking the time to comment and I hope you are enjoying the summer.

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  8. Thank you for sharing. I had to quit my job just last year due to severe sleep deprivation which flared up my Fibromyalgia after 9 years of having it under control (long story)..I am always interested in reading about how others cope with the day to day challenges.
    I found your link via Strut your Stuff. Returning follower via G+

    Handmade at Warratahstree

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    1. I'm sorry to hear it, I understand long stories and fibromyalgia and sleep deprivation and flares unfortunately! If you ever want an "ear" Drop me an email or tweet me, actually I'm terrible at twitter I have trouble sticking to the 140 character limit :) I hope things improve for you, I'm still trying to find the right combination myself. Have a great weekend!

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Thanks for stopping by! I appreciate all of your comments. I try to answer all of them. Sometimes life takes over and I can't get to it right away. Please don't be offended. I would love for you to leave your blog address or social media links so I can follow you or contact you. Thanks again for taking the time to be a part of my life, you are awesome!