Fibro Day at a Lupus Group about Sjogren’s Syndrome

Today I spoke about Sjogren's Syndrome at a Lupus Support Group on Fibromyalgia Awareness Day. Can you say that three times fast? Because my friend and I were interviewed in our local newspaper about Sjogren's Syndrome for Sjogren's Awareness Month in April, a member of the Lupus group asked us to speak to them about SJ's. We were thrilled to do. Our goal is to educate as many people as possible abou SJ's. So off we went to our local Perkins Restaurant, where we were able to have a lunch, meet some courageous and kind people and teach them about one of our causes. The leader's husband … [Read more...]

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When You’re Sick and Don’t Know Why

I have so many chronic illnesses with overlapping symptoms that when I get sick I don't know if it's just a cold, something more serious or which one of my health conditions is causing my problems. What makes it even more frustrating is that I don't know what doctor to call for advice. Because I'm on immunosuppressent meds, a cold or virus can be a big deal. It can take months for me to get it out of my system and what is "just a cold" to others can turn into something serious for me. For the past 3 days now I've felt like crud. I can hardly stay awake, my head is pounding, my throat is … [Read more...]

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Take This Job

Since I've been diagnosed with Myasthenia Gravis in 2003 our medical bills have been sky high even with an excellent insurance carrier. For over 3 years we have hit the catastrophic limit on our plan. That's even with my getting Medicare benefits last year. Organizing and paying the bills, being sure that doctors' offices, hospitals, pharmacies, labs, etc. all have the correct insurance info, sending the paid receipts to my hubby's Flexible Spending Account, then getting all of this info ready at tax time (including milage and tolls) is a job in itself. Keeping track of doctor, lab, and … [Read more...]

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Night Out With the Girls

I had dinner out with a some women I know from a Mom's meetup group I belong to. It's always nice to get out of the house especially without children. It was a lot of fun. I ate too much and spent too much, but it was worth it. This is something that people with chronic illnesses should try to do. Of course at their own pace. But it's good to be around people who aren't sick so we don't focus on our health. It's nice to just talk about "normal" stuff. If I'm not feeling too badly I can get my mind off of my aches and pains. I can talk and laugh (even at myself!), and pretend I'm not … [Read more...]

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Learning and Relearning

I used to be really smart. Not just the kind of smart where I had to study to get good grades in school. The real smart. I could take a test without much studying, write a paper off the top of my head, speak well, etc. Sorry, I'm not bragging. It's just that with all of my health stuff, I've lost that. It's sad, frustrating and makes me feel less confident at times. I now have an anger problem. I get angry easily if things don't go my way especially if it has to do with something I know I should know. This is not a pity party. Just letting others with chronic illnesses know that Brain … [Read more...]

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