enjoying life

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My Best Friend Self Sabotage

I really try hard not to curse… especially when I blog. But for goodness sake the shit that has been going on in my body has been uncool. I mean I understand what I have… I get that pain is a part of my life… FOR THE REST OF MY LIFE (and I’m not yelling at you, just yelling in general). My level of frustration is pretty damn high right now… can you tell?

There’s a lot going on… many stressful events surround me and I’m trying to take it one day a a time. My best friend at the moment goes by the name of Self Sabotage. Are you familiar with her? She’s a real bitch. She follows me around all the time and she’s super bossy! I try to get away from her, but one way or another she’s always creeping up on me. Needless to say, she’s standing in between me and my well being. I tried to kick her ass out of my life a couple times, but she always catches me when I’m down and for reasons I don’t really understand she lifts me up just enough to make it look like she’s helping (for example when I ate that big ice cream bar the other day). Even as I write this I can feel her sitting right beside me… ugh.

I took a couple days off over Labor Day weekend so I could have a nice 5 day break from work. Guess what I did the entire time? Yup, you guessed it… nothing. I will honestly say I don’t think I have experienced that level of pain in years. From the Friday I took off until the Tuesday I attempted to go back to work, I could barely get from the couch to the bathroom…. my husband reminded me that every time I take one of these long weekends to relax, my body decides otherwise.

It’s exhausting. I am exhausted. I can feel myself slipping down that f’d up black hole and I’m clawing at the edges to not fall in. Normally I don’t want to write when I’m feeling this way, but today I felt like it would help. As I sit here and think about what’s going on in the world… honestly? I am one person in a world of wars, hurricanes, earthquakes, racism, ignorance, intolerance…. the list of horrible, tragic shit is endless. When I put my life into perspective I realize that what I have is absolutely fucking awesome. Way to turn it around, huh? I have to tell you… sometimes it takes stopping my life, sitting at my desk and writing to stop feeling sorry for myself and be thankful. That really just happened, I sat down not feeling very grateful and after thinking about it I realized how wrong I am.

I have to interrupt this blog and tell you… I am definitely being tested, as I am sitting here I’m hearing this drip drip drip from across the room and I’m thinking it’s the humidifier doing it’s thing… it’s definitely doing it’s thing. I got up to take a look and it basically drained all over my dresser… a full tank of water. I’m being tested.

Anyway! I could definitely fall down that black hole with all the crap going on in my life but at the end of the day I still have my family. I have my friends and we have a roof over our heads which is a lot more than a lot of people right now. I AM BLESSED (I’m still not yelling at you, but I’d love to be on top of a mountain yelling this at the top of my lungs)!!

I am in pain… I am depressed… and… I am blessed. I can take the bad as long as there is good and I thank God for all the blessings in my life.

If you are feeling down, please take a moment to stop and remind yourself of all the blessings in your life. It doesn’t mean your life isn’t hard, it just means it’s maybe a little better than you first thought. Take a step forward with me and kick that bitch Self Sabotage out of your life and start new. Every day brings you another new opportunity to try again… in fact, every decision you have to make is another new opportunity to make Self Caring your new BFF. We will stumble (trust me… I have fallen down enough times to make it from the top of Mt. Everest to the very, very bottom), but at some point you will get that mean girl out of your friend circle. I will start tonight by not eating that donut… damn, and it sounded so good too!

I am so thankful that I you have stopped by today. Please have a pain-free day.

I love to hear from you, please take a moment to leave a comment.

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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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

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Happy Fibromyalgia Awareness Day!

Today is Fibromyalgia Awareness Day. For me, it’s a reminder of how far I have come since I was diagnosed. From that day (let’s call it D-Day) many years ago to today the amount of resources and information available at your fingertips is infinitely better. I remember going to the bookstore every month or two and literally purchasing every book there was available on Fibromyalgia… I couldn’t get enough information. These days I am not such a voracious reader of the subject. I just live my life to the best of my ability… it’s a part of me. I realize I will have this for the rest of my life and for the most part I have accepted it.

There have been days (like yesterday) where I get so frustrated I want to walk away from this life and just keep walking into the sunset never to return. Seriously?? How far would I get? After about 1000 steps I’d have to call someone to come pick me up and ask them to drive me into the sunset… which defeats the purpose… and takes away all the dramatic effect. But you get it. It’s like Day 90 of feeling like shit every other day.

Disney-Pixar-Inside-OutHmmmmm… could it be the stress? There is a lot of that to go around. I know what I should (and shouldn’t) be doing. I have all the information and tools at my fingertips but I am struggling with the motivation. I have no energy… did you see that movie Inside Out? Sadness has taken over… Anger and Fear are fighting to take over. Where the hell is Joy?? She needs to find her strength and come out of hiding.

There’s so much going on in my head all the time I can’t remember having a moment of quiet. I know part of my frustration these day is the constant high pitch tone that never goes away. I lie down at night and there it is. I wake up in the morning and it’s like “Good MornEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE…” and it never gets to the ‘NG’.  I’m like, JUST FINISH THE DAMN WORD! How hard is it? Good MornING, say it with me… GOOD MORN-ING!!! And then I realize I am yelling at myself… in my head… and I have only just woke up. Wow. And for a few moments Disgust walks in and just shakes her head. But this high pitch sound… it’s stuck, like a needle skipping on a record player (remember those? God I miss my old stereo with a record player and tape deck!). If I could just pick up the damn needle and stop the madness… andddddd let’s give a warm welcome to the latest diagnosis to join my life… Tinnitus!! (I really tried to slam the door in the face of this most recent guest, but Tinnitus just planted themselves on the doorstep and wouldn’t leave… RUDE!)

When I got out of bed this morning… that’s the other thing, when did 5am become my normal wake up time? Geez how easily am I distracted this morning!! Anyway… when I got out of bed this morning I thought about how it’s Fibromyalgia Awareness Day and I thought it’d be a great day to remind folks of the Tools and Resources out there. There are a lot and I quite honestly haven’t searched for new sites lately… but here’s a reminder to check out what I have found and feel free to share what your favorites are. I also have some tools that I have created that you are welcome to use:

It is a day of celebration! Fibromyalgia can be overcome… it’s frustrating and obviously very painful, but it’s not a death sentence. Do better than me! Eat right, exercise your body and mind and most important… laugh, smile… find your blessings throughout your day and be grateful. Today I am grateful that the medical field is more accepting that Fibromyalgia should be treated by a medical doctor, not a psychiatrist. It’s not in your head people, this is real. I am grateful for my family, my friends and the wonderful weather. I am grateful for those of you that have taken the time to read my post today.

I wish you all a pain free day. Be blessed!

Gentle hug,

Tamiko

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How has Fibromyalgia Affected You?

You know how one singular day can seem really long? Like you are sitting (or standing) at work and you can’t wait for the day to end? Every minute feels like an hour and every hour feels like a day… the struggle to get through the day is so hard that you wonder to yourself, “How many days like this can I possibly endure?”. My days have felt like that a lot since the beginning of the year. It’s crazy how long this stupid flare has gone on. It’s dumb, the word “flare” doesn’t even define what has been going. In the dictionary, the words used to define flare lead one to believe it’s sudden but quick… a bright light used to bring attention. Well, I’m sure all of you are well aware, the attention part is definitely correct. No way you could ignore this shit. Bright light? Not so much. Although I imagine inside my body there’s a bright light at the points where all the pain hits in my muscles and nerves. I must look like a Christmas tree inside… before Santa drops off all the wonderful gifts. Sudden but quick? Not in the least. My mom asked me the other day about being in remission. I never thought about that word, I’ve only associated that with cancer. Again, the words in the dictionary used to define that word are, “a period of time during a serious illness when the patient’s health improves“. It is fitting, but it would feel strange to use it. Although, right now I’d be ecstatic to apply that definition to myself!

Yesterday my husband and I shared our 21st wedding anniversary together… our 29th year together. A year ago, on our 20th wedding anniversary we celebrated it in the hospital. That was the day I had surgery. One I hope never to have again. But it makes me think. Time seems to go by so slow most days, while a year ago seems like only yesterday. Time is a funny thing, in one moment it can feel like it will never pass while only a moment later it feels like it’s going at warp speed. It reminds me that I need to do a much better job of living in the moment. Not worry about later today or tomorrow or ten years from now. Make the most of right now.
Our anniversary celebration didn’t go at all like we planned. We were going to go watch the sunset on the coast, enjoy some good food and maybe go for a walk along the beach. Sounds wonderful. Afternoons and evenings are the hardest for me so although I felt pretty good in the morning, by afternoon I could barely walk. So we ate in and watched TV. When I apologized to my husband later in the evening, he was not very happy with me. He constantly reminds me that what I am going through is not forever, it’s just a moment in time. We’ve had decades together and so many wonderful memories… he knows that this too shall pass and we will again be walking along the beach. I am so blessed to have this man in my life.

Which leads me to another topic. I was asked recently to contribute to a medical magazine (the kind you see while waiting at the doctor’s office) and one of the questions I was asked is how Fibromyalgia has affected me… as you can imagine, I am definitely most affected by my lack of independence. I rely on my husband for everything. He’s amazing. He takes care of everything… he cooks all the meals, keeps the house clean, makes sure the kids have everything they need and he makes sure I enjoy life. He makes me laugh every day and he supports all my trial and errors in the hopes something will ease the pain. He’s amazing. I have a lot of respect for those of you that are on your own or in a relationship where you don’t have the support you need. One of my biggest worries is what I would do if I were on my own… but right now… in this moment… I just don’t have the energy to figure that out and more important I just said two paragraphs ago I need to make the most of right now. Damn… bad habits are hard to break!

I woke up this morning feeling so blessed. I say this a lot, but I don’t think it’s possible to say it too much. Keep the folks around you that love and support you. Get rid of any negativity. It’s hard enough without having people bring you down or bring drama into your life. I believe what keeps me going is that I know, no matter what, I am loved. I have hit the lowest lows in the past few months, I have questioned my reason to live when it feels like every day is so hard… I have gone into that dark place. When I hit rock bottom I find so many reasons to end the pain… but I only need one reason to keep going. Love. That’s when I see the light shining through the darkness. Don’t let the pain and frustration take away all the moments of love and laughter you will have in your future. It’s there… it may seem out of reach at times but sometimes it’s right in front of you and all you need to do is look up.

I wish you a pain-free day and a day I hope is filled with love and laughter!

Tamiko

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How Honest Are You?

… vent, vent vent… complain, complain, complain… this is how i feel. I feel like everyday I say the same damn thing. It goes something like this…

girl-150102_640“I am not feeling well”

“I am exhausted”

“I am in a lot of pain”

“That food was so good!” … and an hour later… “That food made me really sick”

“I don’t have the energy for that”

“My legs aren’t working” … “My hands are killing me” … “I have a migraine” … ” …

I can go on and on and literally ON! I know a lot of you folks out there feel like every time you describe to your family or those closest to you how you are feeling … it’s like a broken record. Should we lie? If I don’t tell the truth people assume that I’m feeling perfectly fine and then expectations change. The truth of the matter is, just as quickly as I forget what pain feels like, others forget what me in pain looks like. And honestly… be super-duper honest… is there ever a moment in the day when you don’t feel any pain? For me, the answer is an adamant “NO!” (I’m really not shouting at you… just making a point). So if I go with my baseline pain level and call that “fine” and then just speak to my worse than baseline symptoms, is that better? And better for who? Me? My family?

What prompted all this? Well… I’m not sure. I think it’s because I have been in a flare for months now. I’m not sure how long because at the beginning of this calendar year I, for no rhyme or reason, stopped using my calendar. I had a calendar last year that I wrote all my health stuff in… this year I just haven’t had the energy. I’m not even sure it’s a lack of energy thing as much as it is I got tired of thinking about everything. I’ll be honest… I’m kind of a mess right now. But, as I was saying, I feel like I’ve been flaring for months. I don’t recall being in a flare for this long in years. It’s just not calming down.

So, is it a burden for my family and friends to carry if I am honest about how I am feeling or is it a burden for me to keep the truth to myself? What’s the balance and where do you draw the line? I’ll tell you what. I’m tired. I’m tired of feeling like shit. I’m tired of being depressed. I’m tired of never being able to say… “I feel GREAT!”. I’m just flippin’ tired.

And now that I have vented and complained what the hell am I going to do about it? Ummmmmmmmmmmmmmm, can this be one of those days where I just vent and complain? Do we get those days? I think if you talked to my husband he’d tell you I definitely have those days… but that’s not what I want to do with you folks out there who have chosen to follow my blog. We all have these shitty days, but to just vent and complain brings everyone down including ourselves. How do you get out of the pit of pain and depression? I believe you have to be kind to yourself. Acknowledge that you will have bad days and today is one of them. Tomorrow is a new day. It’s a new opportunity to have a less painful day. A less down day… one that could be a happy day. It sounds strange, but in our world of chronic pain – pain and happy go together. You cannot let the pain take your happiness away. If you don’t allow yourself to be happy while in pain… the alternative is not a life worth living.

IMG_0379Yesterday was a pain and happy day. I was having some issues walking, but I was determined… I couldn’t let that ruin our family day. We started the morning out playing soccer with my exercise ball in our bedroom (don’t tell the kids) – I don’t think I’ve laughed that hard in a long time (let’s just say we were almost in the market for a new tv)… followed by an awesome breakfast the kids made for Father’s Day and then we all piled in the car and spent the day together. A day which included walking… which was extremely painful. In this instance I was not about to let the pain get in the way of everyone’s happiness and just as important mine. We had a beautiful day which I managed with pain meds, laughter, joy and a lot of positive self-talk. A pain and happy day.

So back to my question… how honest should we be? Maybe I will try another approach. Maybe I’ll use the baseline approach and if I’m feeling my normal pain, I’ll say, “I’m doing good!”… I might even try to start saying, “I’m doing great!”. If I’m feeling worse than normal, I can just say “It’s not a great day”.

Our lives are not predictable. The only thing we know for sure is that there is going to be pain, we are going to be uncomfortable. We are going to have days where we want to scream and shout, stomp our feet (although that would cause more pain), and cry… but after you realize your life could be a lot worse and that you are surrounded by the best family and friends anyone could ask for… you realize how blessed you are. Today may be hard… but there’s always tomorrow.

Thanks for stopping by! I love hearing from you either by email or comments.

Stay cool and relax… Gentle hugz!

Tamiko