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I was recently diagnosed with Distal RTA & Sjogren's Syndrome, which has been a spiritual wake up call for me. I decided to create a blog to empower myself, educate my family & friends and create support for others. I live in Central Florida with my partner, my 10-year old son, an epileptic pug and a rescued cat. I am mecurial, sensitve, passionate and intense.

Tuesday, December 27, 2011


Last night I was thinking that there must be stages or phases that one goes through from the time they are diagnosed with a chronic illness to when they have fully accepted it and can say they are living well. So I did some online research today and found out I was right! The following came from Felicia Fibro's blog.

Dr. Steve Overman spoke next and much of his presentation discussed ideas from a book he co-wrote with his patient who has fibromyalgia, You Don’t Look Sick: Living Well With Invisible Chronic Illness. He pointed out that, “‘there is no cure’ does not mean that you cannot be well.” That is something that I whole-heartedly agree with. One of the most important focuses of what he spoke about are the “four phases to chronic, invisible illness:

1.GETTING SICK: includes the crisis of the onset of illness and a person’s fear of the unkown. A time to diagnose, find treatments that work, find hope, and help you let go of fear.
2.BEING SICK: requires treating the patient so that inflammation and pain are controlled. The physician empathizes with the patient’s natural feelings of frustration, anger, resentment, and loss. A time to stabilize medications, improve your home program, and increase social activities.
3.ACCEPTANCE: requires working through the grief that occurs when it becomes clear that “The illness is not going away.” A time for mourning losses. A time to find new ways you can give of your gifts.
4.LEARNING TO LIVE WELL: occurs when a person finds meaning in her/his illness, and uses this understanding to rejoin and give back to family and society. A time for reducing medications, increasing activities and finding meaning.”

Since it hasn't even been a month since I was diagnosed I would say I'm in stage 1 and it's hard being here. I feel like I've learned so much already yet I feel like there is so much more to learn! I don't feel that my family and friends get it yet (except for my BFF) and tonight my partner and I had our first arguement over it. She's been gone house-sitting for the last week and won't be home until Friday, my son came back from a week with his dad yesterday and today I had the worst day in months, with me sleeping almost all day. Even though my son did very well today, in spite of my inability to be fully present, I told her how concerned I am about her starting a second job and being gone so much. But no matter how much I tried explaining it to her, she didn't get it. She actually said the words I've been dreading to hear - "you've been sick this whole time so nothing is different". How can she not understand that EVERYTHING is different now? Number one being that I will no longer push through the pain and fatigue in order for others to not give me such a hard time. And number two being that I now know how important it is for me to be kind to myself.

I am trying to remember that she is looking at this from a different standpoint. Her number one concern is providing for us. She will do whatever it takes to make sure we have food on the table, bills paid and a roof over our heads. Without her doing that we would have none of it cuz I certainly don't help much. I guess we just have to find a balance, learn to understand the other persons fears and maybe get some therapy. I'm sure there are therapists who can help us cope with this individually and as a couple.

Well it's late, the dog needs to go out and I should get to bed. Even though I'm tired, I spent so much of the day there that I just don't want to go back! I'm going to have to invest some time, creativity & money (ha!) on creating a fabulous, comportable, lucious, peaceful bed/bedroom retreat for myself!!

Blessings to my one follower this late night!

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