Darswords

Chronic Disease (Photo credit: tamahaji)

Celebrities battling Chronic Illness (some of them may surprise you!) : Putting Experiences of Patients First.   A couple of days ago, I posted this article on my paper: Dar49 Daily at Paper.li.com. I found it so profound that I thought I would share again. It isn’t that I am happy to see others suffer like I do or worse than I do. It is just nice to see a bit of validation for those of us who have invisible diseases/disorders. That it wipes us out of the work force could be seen as psychological. And if you saw some of the jobs many of us have had you might look forward to getting out of those jobs, too. But if you have a successful career in acting, singing, or otherwise in the public eye, the disease/disorder becomes real. I miss working in public. I don’t miss the pain of standing all day. I miss working in a fun office atmosphere. I don’t miss data input or sitting all day.

Two days ago, I was excited.

Let me share a little about my household. My husband and I moved to Reno to be closer to my four adultrens. It is a small two bedroom apartment that was okay for the two of us. It felt safe for me when my husband worked nights. But after a few years here, my brother called from Florida. He was homeless with a bad infection in his foot. Now, like me, you may laugh. Of all places to be homeless, the beaches of Florida with coconut palms all around. But after being laid off and then this foot that needed 16 stitches and having lost all his Earthly goods to the landlord he was sunk. We are not rich. But when a loved one, especially my brother is that down and out, I will move Heaven and Earth to help him. Finally, my ex came through with the money to get my brother to safety. He chose to come here and has lived with us ever since sharing monies and skills as he can. Often he is the chief cook and bottle washer as I go through my flares.

Then my husband’s son called from OC California. He, too, had lost his job and found himself homeless without money. Did you feel the Earth move? Yep, we did that to bring him here.

Then my husband retired. He was having his own health issues.

What was once a comfortable, though tiny, apartment with a room I called my studio/office where I had my piano and set up for writing and alone time, now became very tight fit. My brother has the former studio/office. It works for him as he writes and paints and researches. He was working for quite a while here but then got laid off again.

When my husband was working nights, he would sleep in a recliner in the living room while I worked in my office, or now in the master bedroom. His son has taken over the living room where the rest of my hobbies, and piano lived. He has a job. He doesn’t make much but it helps all of us. He has taken over the recliner when hubby moved back in with me for we now share the same sleeping patterns. The problem was the recliner was breaking. He ended up on the floor for a couple weeks. Then a friend at work gave him a seven foot sofa. It works perfectly for him. But my piano was in the way.

Did I mention that we went from a small two bedroom? When step moved in we got rid of our kitchen table and planted his bed there. The landlords didn’t like that, fire hazard, etc. But that left an empty dining area. None of us eat the same things vegan, gluten-free for me, carnivores the rest. So anyway, no reason for a table. Look at that! Room for my piano and desk! My studio has reappeared! All that story to say what I was excited about. A place to work!

piano baru (Photo credit: apaan)

Which brings us back to the first paragraph. I worked so hard a few days ago to get my studio/office into some kind of order I would want to work in. Then–bam! Fibro-flare from hell. I can only work in my office the days that son is at work. This is his Friday. After spending the afternoon in bed, I think I am ready to get out and try to play a tune or two. I doubt I will last long. It will be worth it all to touch my baby with the ivory keys! Can you imagine being able to sit in my office and Dragon-Speaking on my projects? And the caterwauling that can occur when my piano and voice get in synch! Well, the Earth is about to move again!

Now. I have never shared this much. Too much? Well, welcome t0 my life! 😀

Dragon NaturallySpeaking (Photo credit: Wikipedia)

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