fibromyalgia

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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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Where Do You Go for Inspiration?

Warning! You may be tired of the word “inspire” by the time you get to the end of this post…

There is a lot of bad, uncomfortable, messed up shit going on out there in the world. Current events sometimes make it hard to see the good in people and looking into the future can be pretty scary.

Finding inspiration is not easy… but for me these days I don’t have to look far.

My son moved into his own place and let me tell you… his spot in no way compares to the 450 sq foot studio that was my first apartment (and I’m not counting my actual first place away from home). His first weekend out, we all went over to Ikea and I watched him pick out and buy furniture for the first time… and then? I watched as he and my husband put it together. For those of you that have gone through this, you know watching a father and son work together like this is a memory I won’t soon forget. For all the years that we battled while he was growing up… to get to the point where we are now…WOW! I can remember in those early years wondering what our relationship would be like once he became an adult… He is the most intuitive, forgiving, selfless person I have ever met. The decisions and changes he has made since he graduated from college… inspiring.

My daughter has had one heck of a freshman year. Through the challenges and experiences she has had over the last 5 months, she inspires me with her resilience. It can’t be easy being so far away from home, and although she has made a lot of great friends, it’s not the same as being at home with her lifelong besties. Yet she does what she has to, to be successful. And she has been rewarded for her hard work with some amazing opportunities.

I know I say it a lot, but even if I said it every day… shouted from the mountain tops… it would never be enough…  I AM BLESSED TO HAVE THIS AWESOME FAMILY AND FRIENDS!!!. They inspire me all the time. My mom is dealing with health issues that are much more taxing than what I go through every day, yet she makes it work… and her life story alone inspires me. I know we are supposed to raise our children to be better than we are… but it will take me a lifetime to be better than her. I guess that’s the point…

My dad has decided to share his story in the Japanese internment camps by going and speaking at churches, schools and local events. He’s the last of a generation that is living to tell this story. The people who have come to his presentations will walk away learning about something that we never want to see again.

I have watched my parents make a difference in so many people’s lives over the years, I can remember moments growing up when I was jealous of how generous they were of their time with other people. Yet they taught me to be just like them… and it’s one of the things I am most proud of. So inspiring!

My friends who have overcome the deepest, most incredibly sad losses in their lives. They amaze me with how they managed to carry on. It wasn’t easy, but their ability to work through the pain to become stronger individuals is so inspiring to me.

My husband who every day takes care of me. He inspires me to keep going. He teaches me how important it is to live life and not just let it pass by. He pushes me to be creative and works damn hard so I don’t go down that black hole of depression… You know as well as I do that sometimes nothing can stop the spiraling, but the fact that he tries means so much to me.

I could go on and on. Just sitting here writing this makes me see, once again, how blessed I am. What inspires you? I will bet that if you just sit right where you are and take a moment to think about the people around you today or those that have crossed paths in your life, you will feel just as inspired as I do.

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Yachats, OR… if you look close at this photo, with a little bit of positivity, you can see a heart in the ground!

I had someone tell me the other day how inspired they were by my ability to work through my pain. She wasn’t feeling well herself and she found herself thinking about what I must go through and it seemed to give her the strength to keep working. She has no idea what her words meant to me. For those of you with chronic pain, you know it’s rare for people to recognize how difficult our lives can be. Just the recognition and understanding for how challenging it is every day… that was inspiring to me!

I have been meaning to blog for the past few weeks. It’s important to stay positive and keep moving forward. With every reason to be negative and down these days, I need to remember the good. I hope this lifted your spirits a bit.

Be inspired! Best wishes for a pain-free day.

Gentle hugz.

Tamiko

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It’s December… Give Yourself a Break!

where-does-the-time-goHappy December!!!!! Wow, where the heck has the time gone? For 11 months this little voice in my head said, “You need to start working on your Christmas list so you don’t have to rush in December and make yourself crazy and stressed out.“. I mean I honestly had this little voice talking to me almost every day… while at the same time this big booming voice responded with, “December is so far away you have plenty of time!“. Awesome. Well, guess who won. That big booming voice is so annoying.

It’s December and here I am, with a ton of projects to complete and… wellllllll….. I started three weeks ago. Brilliant! I mean, I haven’t been feeling great a lot this past year but that just goes without saying. How many really good days do we have on a continuous basis? I can usually get through a couple days and then I have a couple days that aren’t great. And seriously… it’s been a crazy year!

Kiyomi comes home today… YES! This kid away at college thing is great for them… freedom, free room and board, lots of free time… a lot of “free” going on. For me? Not so much FREE happening and my mini me is no longer here to hang out with and let’s be honest… she helps me with a lot. I am still trying to get used to the quiet. I am not sure I will ever stop missing the sounds of all the laughter from her and her friends. I can’t wait to hear those sounds again in the coming weeks!

The college experience hasn’t been all awesomeness. When your baby calls to tell you someone yelled an ugly racist name at her… on top of the national news of the law professor who dressed in black face and then the kids running around in black face on campus… it’s not so awesome. As a parent who is 9 1/2 hours away by car, you basically send an email to a bunch of people with “President” in the title and jump in the car and go support your baby. There’s nothing more important than ensuring your child feels safe… and IS safe! Well, the campus has a long way to go towards dealing with the race issues overall, but they have done an okay job helping Kiyomi. It takes time.

There’s that word again… time. Everything takes time. It’s so hard for someone like me who has the patience of … well I have no patience. I fully admit I have no patience and the anxiety doesn’t help at all. I’m not going to blame anxiety for all of it… I’m just going to blame anxiety for NOT MAKING IT EASIER! You know what I mean. Anxiety is always instigating, I swear it’s telling my body things like, “Make her sweat… good! Now make her heart race… great! Now let’s see…. what can we do to really make her want to scream at someone for making her stand in this long line… hmmmmmm, how about make her stomach hurt really bad!!! Yeah!!! That’s the one!! Perfection!“.  Thank you Anxiety. After all that, if I fall into Anxiety’s trap (which really doesn’t happen very often) and kind of lose it, Depression pushes Anxiety away and stands tall. Depression is always lurking around. Depression likes to remove all the color from my life and turn everything grey. Ironic that I always tend to go for clothes with grey. You gotta love mental illness! Okay you don’t have to love it, but you do have to live with it… so learn how to manage it so it doesn’t take over your life and control it. I am learning every day.

I am all over the place this morning. What else is new? Don’t get me started with ADD… hahahahahaha! Squirrel!

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Buddy’s To Do List

I really just wanted to say to all of you out there who are dealing with pain, wh\ether it’s physical or mental or like me both, the holidays are very difficult for us. Let’s get through it together. Give yourself a break. You may not get through your long ass to do list. Let folks know that their gifts may be late this year… that although you’d love to, you can’t join every event… that this year, you are doing your very best to make sure you are healthy and happy so you can enjoy the holidays with family and friends. We don’t want to just give presents, we want to be present. Being present is the hardest thing for me. My mind is always racing with all the things that I need to do… I’d love to actually be present in the moment and enjoy it. That’s my challenge for December.

I have made it this far. We made it through Kiyomi’s senior year in high school, the search for the perfect prom dress, the search for the perfect college, the search for the perfect dorm stuff and the start of the freshman year in college a state away. If I can make it through the search for a perfect prom dress, I believe I can make it through December. :)

I’m off to get ready for another beautiful day. Thank you for dropping by!

Gentle hugz.

Tamiko

pinball

Do you remember playing these machines? this is what the inside of my head looks like!!

P.S. Okay I read through this a couple times and it truly is all over the place…  in the end I will leave it as is. It will give you a tiny glimpse (that is such a strange word) of how my mind works. It’s like a pinball bouncing around from thought to thought… and as a matter of fact it’s already moved on to stressing out about needing to pack for this business trip I’m leaving for in the morning. Oh yeah! Did i mention that I have to travel to the east coast for business for five days? Well, I’ll leave that little piece of information for the next time we meet.

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Amazing… MyFoggyBrain and The Mighty’s eBook

I still cannot believe people want to hear my voice… or rather read my thoughts I should say… and to get asked if I want to contribute to a book, magazine or guest post on someone else’s blog? Well that is beyond my ability to comprehend. It’s amazing is what it is. I started this blog years ago when I was at my lowest point. When Fibromyalgia was not on commercials for pain meds… when it took many years to get a diagnosis – while during that time I thought I was crazy. As far and awesome as the knowledge and acceptance of Fibromyalgia has come, there’s still a long ways to go. I look forward to the day I go to a doctor with an issue and I don’t get the standard, “I’m sure this is because of your Fibromyalgia.“. How crazy is this? It took years… YEARS… to get the diagnosis after seeing a crapload of doctors. It took years for my own primary care physician to finally acknowledge/ say the word “Fibromyalgia” during a visit… and now every time I go in, it’s the first and pretty much only thing I get as a result of whatever the hell is going on with me. And like all of you out there with chronic pain, IBS, depression, anxiety… I could go on and on… you NEVER (as in NEVER EVER EVER EVER!) call a doctor much less schedule an appointment with a doctor unless you have been experiencing an issue for a long time and that little voice (or big voice if your husband/ family member is involved) tells you it’s time to see a doctor. And I’m sure you often get the same result as me… nothing but frustration. So! As I was saying, I look forward to the day the doctor looks deeper and doesn’t just see Fibromyalgia, but sees me and the potential for other issues or even just spends more time understanding what’s going on and makes me feel like I’m being heard. I don’t want my doctor to feel sorry for me, I want my doctor to work with me. I believe those of us who live this life know a lot, research how to manage living with chronic illnesses, go into the doctor’s office with almost more knowledge than the doctor. That’s how it is for me. I hold out hope that one day soon things will change.

Wow, I totally did not intend to go into that rant. Every time I think about my journey as it relates to the medical world, there’s a definite level of frustration. Don’t get me wrong, I have had some super awesome doctors and counselors through Kaiser’s pain program. But there are only a few of those in comparison to the vast majority.

Back to the reason why I started this post… you all know how easily distracted I get so thank you for bearing with me! Anyway… In the last week The Mighty’s Real People, Real Stories: Fibromyalgia E-Book was released. It was an honor to contribute one of my past blog posts to this book. I hope you take the opportunity to check out the book and read through the many stories.

Everyone has their own story to tell based on the journey they have been on. Don’t ever hesitate to start your own blog, write your own story – focus on the things that make your life worth living. We have our good and bad days, but I believe it’s important that we uplift each other out of that black hole we can so easily drop down in. That’s become my purpose with this blog… I may vent and feel like crap, but at the end of the day it’s important to find something good to say. I have to try to find something in my day that’s positive! You do the same.

Thanks for dropping by. Please feel free to shoot me an email or leave a comment. I love to hear from you!

Gentle hugz,

Tamiko

BTW… my new obsession is bullet journals. I can’t wait to share my experience and how much I am loving it! Stay tuned…

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Guest Post: How to Use Yoga and Meditation to Treat Chronic Pain

Please enjoy this post from guest blogger Jennifer McGregor !

despair-1235582_960_720For many chronic pain sufferers, the side effects of using prescription painkillers are just as difficult to manage as the pain itself. Many painkillers in the opiate family reduce people’s ability to react quickly and control their movements; these side effects make it particularly difficult to drive. It also is fairly easy to become addicted to painkillers because they cause a high. For these reasons, many chronic pain sufferers turn to alternative treatments like yoga and meditation to treat their pain.

Yoga Changes the Brain

New research shows that practicing yoga affects the brain and relieves chronic pain. While chronic pain sparks the parts of the brain associated with depression, anxiety, and impaired cognitive function, yoga has the opposite effect on the brain. Dr. Catherine Bushnell at the U.S. National Institutes of Health oversees a program on the ways in which the brain perceives, modifies, and manages pain.

Dr. Bushnell and her team have found that mind-body practices like yoga and meditation can prevent and even reverse chronic pain because they reduce pain perception and even benefit the brain, itself: as gray matter decreases and white matter integrity improves, the part of the brain associated with consciousness increases in size and connectivity and improves a person’s pain tolerance and thresholds. The major implication of Dr. Bushnell’s study is that yoga and meditation have a real pain-relieving effect on the brain and may be more effective treatments than prescription painkillers for relieving chronic pain.

Chronic Pain and the Mind-Body Relationship

Today, scientists and yoga experts understand that most chronic pain has a physical injury or illness at its root but is sustained because the initial trauma changes the body and the mind-body relationship. For most, chronic pain means the mind and body have learned how to detect even hints of a threat and mount a full protective response, causing intense discomfort; simply put, the pain people feel may be more about a protective mind-body response than about long-lasting pain. In fact, chronic pain is so complex that there are several ways to go about treating it.

Both modern science and yoga recognize that present pain and suffering are rooted in past pain, trauma, stress, loss, and illness: modern science refers to it as neuroplasty, and yoga refers to it as samskara. The mind and body have become accustomed to chronic pain, and through yoga, people can teach the mind and body new ways of dealing with it. That’s why, as a mind-body experience, chronic pain can be positively influenced by yoga’s healing practices including breathing exercises and restorative poses.

Yoga and meditation help a person relax and give the mind and body healthy responses to practice in the face of chronic pain. Transforming chronic pain and stress responses into chronic healing responses is how yoga and meditation relieve the pain. Meditation on positive feelings, relaxation poses, and breathing exercises strengthen the flow of energy in the body and re-center people to their natural sense of well-being.

Relaxation and Chronic Pain Relief

Relaxation especially has a healing effect on chronic pain because it turns off stress responses and directs the body toward repair, immune function, digestion, and other self-healing processes. Relaxation lessens the effects of the mind-body samskaras that add to the pain and serves as a foundation for healing. Consistent, well-practiced meditation and yoga teach the mind and body to rest safely rather than respond to stress and pain. Breathing practices associated with yoga and meditation especially help relax the body and enhance restorative, healing processes.

Recommended Yoga Poses and Meditation Practices for Treating Chronic Pain

There are many possible sequences for restorative yoga to rest the body and engage the mind. The following poses include breathing elements that help people focus on healing thoughts, sensations, and emotions to relieve their chronic pain:

  • Cobra
  • Nesting pose
  • Supported bound angle pose
  • Butterfly
  • Supported backbend pose
  • Supported warrior
  • Supported forward bend
  • Rear arm lift with strap
  • Wall plank

Chronic pain sufferers do not need to rely on prescription painkillers that can lead to addiction and are notorious for negative side effects. By practicing yoga and meditation, those who suffer from chronic pain will train their bodies and their minds to approach pain in a healing manner instead of a painful one with stress responses.

publichealthlibraryJennifer McGregor is a pre-med student, who loves providing reliable health and medical resources for PublicHealthLibrary.org users. She knows how difficult it can be to sift through the mountains of health-related information on the web. She co-created the site with a friend as a way to push reputable information on health topics to the forefront, making them easier and quicker to find.

Image via Pixabay by geralt

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The View From My Room

I can’t believe it… it’s really been since May that I wrote my last post. Hmmmm…. Well, there goes another goal for the year that I’ll miss! Although I must say, I actually have a good reason behind all this. Since my last post it’s been non-stop crazy… whether we are getting ready for graduation or preparing for college, this weekend is the first time I really feel like I have been able to sit back and relax.

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View from her dorm room!

Where has the time gone? First we had high school graduation and all the stuff that goes along with it. Except this time, with my new found sewing skills… I decided to make laundry bags and book bags and towel wraps for Kiyomi and her friends for college. It was a lot of fun, don’t get me wrong – but also a lot of work with defined dates everything had to be done by! The best part of all this was the time spent with friends while sewing. It was a learning experience, but one filled with laughter, great conversation and, of course, good food! The end result was I learned a lot and had some nice hand made gifts for some wonderful kids.

The college preparation experience entailed finding the perfect comfortor set (which took many, many weeks), the rain boots we promised her if she decided to go to Eugene… and all sorts of required dorm decorations, clothes, etc. We atttended orientation… or IntroDucktion as they call it at the University of Oregon… a great experience, but really brought home how much closer we were getting to her leaving… and then over the summer as her friends were leaving (or preparing for leaving) for school – each day and night became “the last XXX…” get together. So we saw her less than any other time of her life. I think I started missing her  the day she graduated.

img_6043All this to get to this weekend. We drove up on Tuesday and moved her into her dorm room on Wednesday. The move-in process was more work than I thought it would be… it wasn’t bad, just took a lot out of me. Times like this always remind me of all the crap I have. The pain, the digestive issues, the mental bullshit… it all just hits me at once. I go into these events thinking… “I got this!!” and halfway through my pain starts rearing its ugly head. I told my husband my body was basically saying, “what the hell do you think YOU’RE doing??”… and then proceeded to remind me whose boss – and apparently it’s not my desire to get shit done that’s boss. Although I did fight it for many hours before finally giving in.

We had lunch on Thursday, she jumped out of the car and Ray and I drove over to the coast. We are staying in the most awesome hotel (the Fireside Motel in Yachats). We have an oceanfront room (something we have never done before) and have just stayed in the room all day watching the waves or listening to the waves while we read/ write. It’s a little slice of heaven. I had no idea how exhausted I was until we got here and sat down to watch the sunset. We had all these plans to sightsee… and then… we both decided to just do nothing. We have gone out for some yummy dinners – but stayed in our room and just had snacks during the day. I am having the time of my life!

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View from our room!

What have I learned? Okay i didn’t “learn” this… I was reminded (very loudly) to listen to my body. In times like this, how about if I don’t self sabotage and eat all bad shit… treat my body with respect. I feel like I was on a mission to spiral down in anticipation of letting Kiyomi go. Stupid.

It’s a privilege to be healthy enough to travel to this place. We drove up to our room and walked the 15 feet from the car through our room to the outside deck. The first thought that came to mind was… “This place is perfect for my mom!!”, but she isn’t feeling well enough to travel like this anymore. I need to be on a mission to feel good! I’m on my way… this place we are staying at, the sound of the ocean, surrounded by this beauty – it’s time to move to the next phase in our lives. Healthy is a good place to be and it’s my new goal!! I should go for a walk on the beach now… hmmmmm… maybe in an hour. One step at a time. :)

Thanks for stopping by!

Tamiko