Today is a rest day. I rest for you.

Today I rest.

I do too much. I had a cold for the past 3 days. I felt back to normal yesterday, just a little fatigued and I pushed myself. I didn’t feel as strong as I usually do and I lifted a heavy object and caused some pain in my back. I should have known better. The back pain kept me awake all night. So, today, I told myself, that today I rest. My goal this year is to be healthy and honor my time I need to stay well. I have a tremendous desire to constantly be doing and it has landed me in hospital with flares in the past years.

I’m proud of myself that I cancelled all my obligations today. I had a hard time saying no to my appointments, but right afterwards, I felt good about it. My fear is that people will be angry, or consider me too unhealthy to carry out tasks, or I will be looked at as a “weakling”, or be considered unreliable if I cancel plans. Before today, this used to cause me grief to be looked at this way. But this year, I will put my health 1st. Because if I don’t put myself 1st, then I cant help others.

It’s difficult to explain to people who see me to understand that one day I am fine, the next I can be struggling to stay alive. I look very healthy and I laugh easily. I smile a lot and I am talkative. It’s hard to explain, I can look very different if the dragon appears over night.

I lost a dear friend recently who had AOSD. I was extremely sad when I heard the news. This person had helped me through my darkest days of when I was flaring and could not bathe myself, dress myself or walk more than 10 feet without tremendous pain and fatigue. I was in a terrible depression and in such horrific pain during that time when she would email me back and forth through the nights as I cried in pain. Back then, when I initially flared in 2008, there were no online groups where we could talk to others. The only place I found help was the International Stills Foundation Site. I could barely sit and type on my lap top but I needed help to stay alive. I was down to 98Lbs and had constant vomiting, chills, fevers to 104, the rash and my liver was shutting down. This beautiful soul replied immediately and helped me when I emailed. She comforted me and told me that I could not give up. She begged me to hang on. For several days she checked on me. She saved my life. And recently she passed away and I cried very hard.

From then on, as I got on steroids and methotrexate and I got better, I vowed to start this blog and help anybody that reached out to me. This is how this blog got started. So, since 2008, I have maintained this blog. Thank you sweet Melly. RIP beautiful soul.

Please take time to rest. Your life depends on it.

Stay well my friends.

Claudine

Daily Update

A personal blog of my rare and awful disease. Claudine Song View All →

I acquired AOSD in 2008. I have suffered so terribly and have found ways to help me regain my life. This my personal journal of this mystery illness to diagnosis. I hope that I can help others with my experience and information.

1 Comment Leave a comment

  1. Dear Claudine,
    I am so sorry for your loss. This seems to be a season of losses which I think makes our sadness and stress worse.

    I have been so thankful for this blog. When I was diagnosed in 2013 I felt relief to find another “like me”. And I read everything on your blog for direction as well as support. I am grateful and feel you have helped me to find and remind me to maintain balance in my life. To have permission to rest and take care of me has been huge.

    Bless you and Happy New Year

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