Start a Conversation Today!!

Can you believe it’s almost May? Time just continues to zoom by … there are moments when I want to implement some kind of slo-mo magic in my life and then there are the moments where I would love to hit the fast forward. The last few weeks have been terribly painful. When I start to feel like this vice of pain is getting released, another flippin’ flare hits me. Yesterday was particularly fun… every time I took a breath this intense pain just pulsated through the right side of my back. I woke up this morning and it was all gone. Don’t get me wrong, I was very happy that that shit was gone, but seriously… it confuses me when the intensity is so high. I actually start to think something else might be wrong… and then I am reminded when I wake up that it’s just Fibromyalgia.

Almost a month ago I had this really wonderful experience. I was requested to participate in a film focused on invisible and chronic illnesses. The audience for this film is all of us living with the illnesses, but it is also for those people who love and support us everyday. The creators of this documentary, Ron and Tasra, have done a beautiful job portraying our journey in a creative and honest way. The work they are doing is so important. It validates that we are not alone. When I viewed the short video that Ron and Tasra shared to give me an idea of what they are creating, I was at a low point in the day. I was laying down in the midst of yet another flare when I read their email… I clicked on the video expecting to watch a bit and turn it off (I have about a 30 second attention span), but I not only watched the entire five minutes (I know… it sounds crazy even when I write it… as if it was five hours, not five minutes)… anyway, I was hooked. I responded right then. Which, let’s be honest… that’s also not my usual M.O. I am horrible at reading emails and even worse at responding (This is me apologizing right now to those of you I have yet to respond to). A memory was in the making. Ron happened to be coming to my city (coincidence? I like to think of it as a blessing from above) and both my children and my husband were available on the date we agreed (triple blessings!). Unbelievable.

I had no idea what to expect. I was nervous and excited at the same time. Ron arrived, set up and we started talking… and talking… and as we talked I was amazed at what I was hearing from my family. This experience brought us closer and helped us to better understand the impact my illnesses have had on each one of us. At my very worst, my son was in his early teens. I realized how hard that was for him. I missed a lot of important events because I just couldn’t walk. I remembered when he was talking that I lived in my bedroom… in the dark. I was so out of it I could barely function as a person, much less a mom.

I know when I’m in a really bad flare or fallen into the black hole of depression I am hard to live with. My frustration and exhaustion get the better of me and there are times when I just feel like giving up. Those are the times when I just retreat into my bedroom, close the blinds and shut the world out. The times when I miss important events, when I let my family down. Meeting expectations can be hard when I’m feeling slight pain… when I’m at my worst, it’s almost impossible. I realized that during the worst months and years, I had (and continue to have) a very unrealistic expectation that my family knew how bad things were for me. At the same time, I acknowledge that my family had a valid expectation that I would be present for them no matter what. While the kids and my husband answered Ron’s questions, there were moments in the conversation that made me pretty emotional. I felt a loss… I was reminded of how much I wasn’t present (both mentally and physically) over the years… but as hard as it was to hear some of the responses… the emotion I felt the strongest? BLESSED. Blessed that we could all sit down together and be honest. I realized how forgiving they are and how, when my journey was decided, God gave me the best gift in the world… my family. I was reminded how far I have come since the days when I could barely move around and the doctors just thought I was crazy. I believe had we not all had prior commitments that afternoon, we could have talked for hours. It sparked an important conversation for us. So, for me, I am very thankful to Ron and Tasra for initiating the conversation.

 

InvisibleIllnessFilm.com

https://invisibleillnessfilm.com/

I tried to make this image a link to their site… but that didn’t really work out… so don’t try clicking on it… it will only lead to frustration.

Watch the video and if you take away nothing else, sit down with your family and have a conversation. What do they remember about you before the shit hit the fan? How has it affected them? What can you all do to improve your communication? your lives? I admit, I completely blanked on the technical, “What is Fibromyalgia” question Ron asked… like really blanked… but for me it doesn’t even matter. This documentary is not about learning what the illnesses are the individuals have.. it’s about hearing how people are living life regardless of the illnesses… it’s about validation.

Thank you for taking the time to visit my blog today. Have a blessed and pain free day!

Gentle hugz.

Tamiko

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What is Your Identity? Best Fibromyalgia Blog of 2013… THANK YOU!

What is your identity? I am really struggling these days trying to figure out what it is or rather, who it is I want to be when I grow up.

So, is my identity in what I know or what I share? Is my identity in the work I do, how I raise my children or how I spend my time? Am I invisible or is my true identity visible? Lordy… am I having a mid-life crisis?

I admire people who know exactly what they want in life … and then go for it. I have never been one of those people. I have pretty much lived my life with the Pretty Woman motto as my own… “I would say I’m a kinda fly by the seat of your pants gal, you know moment to moment.

seejanerunI have had a challenging six months. We have moved and I have changed jobs. I have been going in and out of flares the last few months. My walking streak stayed behind with the house we moved from. BUT! On the positive side, I did complete an awesome 5K with my girlfriends and my daughter and god-daughter (I walked, my daughter ran). I went on a couple fabulous vacations to Santa Barbara to spend time with my son and enjoy family time right on the beach. I also went on vacation to Tahoe with family and had the most relaxing time with everyone, while enjoying delicious home-cooked meals in a beautiful location.

I am blessed and I realize there will be challenges, I just need to remind myself that so far, I am still standing (literally, I’m not in a wheelchair or using a cane). I have my children and my husband who always support me, my parents who never fail to lift me up and the rest of my family and friends who surround me with love. As far as my identity… let’s just leave that for another day… when I have more energy (or let’s be real… when I have some energy).

And… on another awesome note… I just realized that I received this award for the second year in a row!! I am very thankful to everyone who visits, follows and subscribes to my blog. THANK YOU!!

Bestof2013

Wishing all of you a pain-free day/ evening. Thank you for visiting! Please feel free to leave a comment, I love hearing from you!

Tamiko

Day 19: 5 Dinner Guests…

I am participating in the Health Activist Writer’s Month Challenge. Please visit WEGO Health’s blog and the WEGO Facebook page to find other writers tackling the same topics—or sign up for the challenge yourself!

Today’s Prompt: 5 Dinner Guests. Who are 5 people you’d love to have dinner with (living or deceased) and why?

If I could have dinner with five people, they would definitely be the following:

  1. My Godmother
  2. My Grandmother
  3. My auntie Kei-chan
  4. My auntie Tomo-chan
  5. My mom

These are all the most awesome women, all who are now passed away, except for my mom (Thank God I still have her!). I believe this would bring my mom the most joy to share another meal, more importantly the conversation, joy of being with her family and best friend and oh my goodness… the pure laughter that would result from the things that would be said. I can’t even imagine how cool this would be!

I know with all my heart, during the time we would be together, any thought of pain for both my mom and I would be non-existent. For those few hours, it would be just like the old days when I was the child listening to all the conversation going on around me, taking it all in. Learning and laughing.

What an amazing dinner this would be… good food and the best company ever. Another perfect day in the making.

Day 5: Ekphrasis Post… WHAT? Ekphrawhatis?

I am participating in the Health Activist Writer’s Month Challenge. Please visit WEGO Health’s blog and the WEGO Facebook page to find other writers tackling the same topics—or sign up for the challenge yourself!

 

Ekphrasis… what the heck does that mean? That was my first question when I saw this prompt for today. So, of course I looked it up and here’s the definition, “a literary description of or commentary on a visual work of art“. So! Now that we are all on the same page… here’s my post for today… enjoy!

The instructions for this posting was to go to flickr.com/explore and write a post inspired by the image. I searched and searched and searched for a photo that inspired me. I was getting frustrated over the whole thing when I realized I am way more inspired by pictures I already have… sometimes you just gotta rebel and do your own thing.

This picture is of my parents on one of our family vacations when I was growing up. It is one of my absolute favorites! Our vacations were spent in a cabin… no tv, no electronics. We played cards and read and just hung out together. Together. What a wonderful concept!

Look at my mom’s feet. They don’t touch the ground!!!! I laugh every single time I look at this photo.

They have been married over 50 years and that alone, is inspiring. Marriage is hard, or I should say… marriage is hard — WORK! That stuff in the movies is so romantic and funny and yes, sometimes, heart wrenching…  marriage is some of that, but let’s be real here… it’s not a romantic comedy most days. Most days marriage requires work. Respect. Love. Trust. and for those of us with chronic pain, with depression, with any chronic health issue – marriage is not easy. The one with the health issues is struggling to get through each day while really trying not to be selfish/ self absorbed… the spouse is trying to support while not complain – in the end both are trying not to build up resentment. The healthy one for having to do everything, including being the relationship cheerleader and the unhealthy one for not having as much freedom as one would like. I am quite sure many marriages do not survive. I am blessed… I have my parents to look to for advice and inspiration and I have a beautiful, loving and supportive husband.

This picture also inspires me with the desire to spend time with my husband and family doing things that don’t require spending a lot of money or even go too far. It makes me want to grab up my fam and go outside and take a hike or picnic.

Most of all… this picture makes me smile and remember some really fun family times growing up. I hope my children have memories like this when they have their families.

I want to be healthy and be able to go on family vacations and take long walks and swim and dance and run on the beach… managing my pain and mental health will, one day, get me there.

Thanks for reading! Stay cool and pain-free.

Tamiko