Your Life is Worth Living… Blog that!

It’s May… and I can’t believe the amount of time that has passed since I last posted something. I feel like I say that every time… You can’t possibly imagine how much this blog has helped me over the years. If you are going through a painful time, just taking the time to express yourself through this type of communication can really make a difference in your state of mind. Even if you don’t publish it (I have a lot of content that I wrote for myself and didn’t post), typing your thoughts out can help you identify your truths. When I write it helps me realize that my life is good. My life is full of blessings and love. My truth is… My life is worth living.

I am sure many of you have said to yourself, “I’m so tired of this shit, I’m ready to go…” and by “go” you know what I mean. The pain turns into little to no sleep which turns into depression which turns into difficulty being a friendly human which turns into stress which turns into more pain! That cycle is so forked up… but in the midst of all that, there are some good times. For me that goodness can wipe out the sad, painful days and make me feel human again (even friendly human!). Even if it’s only for a few days or hours, it’s worth it. My life is worth living… and so is yours.

tom-sodoge-84368-unsplashTrust me… I definitely have my moments. I can spiral down that black hole with no notice. It would be great if there was a warning sign in my head with super bright (okay not super bright, I don’t want a migraine on top of everything else), but with flashing lights telling me to get out of the house, go breathe in some fresh air, focus on my blessings… literally anything to stop me from spiraling down that hellhole… but generally I can be pretty okay one minute and then BOOM! I’m in that space where you feel like you are watching your life from the outside and… it’s not good. It’s as if the Dementors are sucking all the hope and happiness out of me. I need a patronus… I’m thinking a mini flying elephant. Why? Because I love elephants… and why not small with some angel wings? Just for fun I did a search on an elephant patronus and this is what came up on the mugglenet:

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If you are wondering… my elephant’s wings only appear when called upon…

Elephant – Elephants have a formidable presence and are respected throughout the animal kingdom. Elephants are known for their intelligence, complex social structure, methods of communication, and fiercely protecting their young. As a Patronus, the elephant is sure to scare off Dementors through sheer size and unyielding determination to protect you.

I had no idea there was a list of patronuses (patroni? patronus? what is the plural of patronus?) out there, but I’m not surprised. Lord have mercy I have digressed… Anyway, what the hell was I talking about anyway? Ahhhh, the visual of the Dementor… it’s so relevant to me because it’s exactly how I feel when I’m spriraling (which is literally about a week, if you combine all the hours, out of a month). Let me try and get this post back on track… even if there are days when I’m so depressed I can barely move or hold a conversation, the good days make my life worth living! There! That was the point I was trying to make… a bit wordy, but hopefully you get what I’m saying.

The initial direction I was going when I first started writing today is that when I had noone to talk to about my pain and I was so incredibly frustrated with the lack of medical support and information out there… I started my blog. I felt very alone. What I appreciate about using this forum is that I can type everything that’s on my mind (pretty scary), go back and edit and re-write (you should all thank me for that) and when I finally hit Publish, I feel better than when I started. My writing process involves sitting in a quiet space (usually in the dark) and typing whatever is in my head. As I go through the process I probably delete and start over a dozen times. This is the part of the process that makes me realize how good my life really is. It forces me to focus on the positive and be careful to not hang on to too much negativity. I hope that when you read this, you realize you are not alone in your pain, whether it’s mental or physical.

Think about how you are feeling today, write your thoughts down – whether it’s in a blog or in a journal… read, re-read and edit and see if it helps you focus on the positive and get rid of some of that negativity.

Thanks for stopping by and going through this journey with me.

Gentle hugz.

Tamiko

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

Fibromyalgia at Fifty!

50… wow. I can’t believe that I am 50. I can’t believe how quickly the last 50 years have gone by. Damn! I have to make my life better. I realized lately that I spend a lot of time living for another day or another moment. On Sunday, my mind is stressing about having to start work Monday morning. During the week… “Lord have mercy, when will this week be over.”. On Thursday, I’m thinking… Just one more day…”. There’s a lot of, “I can’t wait until… XYZ“. When that moment or day arrives, my mind has already moved on. I really envy people who can just live for the moment. I want to train my brain to enjoy the now. In order to do that I have to somehow shut my brain off. It’s constantly processing… whether it’s curiosity about something going on 5 feet from me or thinking about a project at work or what will I do when I retire or what are my kids doing right now or what should I eat… I mean seriously. I could have kept typing until my fingers got numb because my mind started going 100 mph just thinking about what I think about!! Oh man, you have really entered into my world… Danger! Danger! Warning! Get out as fast as you can!! Once you enter this crazy ass place, I’m not sure if there’s a way out. At least I haven’t found a way out yet.

I keep looking at myself and thinking, when am I going to grow up? I have so much growing to do mentally… although I am pretty confident I way overachieved on the growing physically so maybe that’s why my mental side is so far behind. I used to be so independent and able. With all this medical bullshit, I have lost my way. The last few months have been really hard for me. Sidebar, how many times do I say that? I feel like I say that all the time… “The last few months have been really hard for me.” It’s as if I want to believe that it really has only been the last few months, when in fact it’s been so flippin’ long I can’t remember what feeling good feels like. If you ask me how I’m doing, I will give you the standard, “I’m good” or “I’m alright” or “I’m fine”. I’m not. I’m not any of those things, I’m feeling like shit… a lot… end of sidebar. Anyway, I have not only lost my way in general, I also got completely caught up with that sidebar. (I did warn you in the first paragraph that my brain was a scary place.)

Well… maybe I should start taking my own advice. OUCH! Damn! That really hurts to say that. I mean, I’m great at giving advice, but taking it? Crazy talk. I recently advised my daughter what she should do to sleep better. On another day I advised her on keeping a food journal so she can get a picture of what she’s putting into her body. I am always telling her what she should do when she’s stressed or angry… do I do any of those things? Welllllllll, I definitely do some of them, but for the most part… Not really. It’s hard! It’s really hard to make healthy choices. This is a typical conversation I have with myself…

Smart brain: “You should exercise today.

Emotional Me: “Hmmmmmm, I am in a lot of pain, I’m thinking maybe later… how about some coffee?

Smart brain: “Caffeine is not good for you and that shit you put in it to make it taste good is really not good for you.” (although the word good shows up a lot in that sentence, we all know there’s nothing good about this train of thought)

Emotional Me: “Just this once… last time, seriously, this will be the last time. I really want to be healthy” (followed by a cup of coffee and a carb)

A couple of hours later…Emotional Me, “I’m hungry.” (followed by me standing in front of the open refrigerator or cupboard)

Smart brain: “You should eat something healthyand before you pick something to eat… take a moment to answer this question, are you hungry or are you bored?

Emotional Me: “Screw you, I deserve to eat whatever I want.”

It’s basically all downhill from there. Sentences that start with “I deserve… ” come up a lot in my mind when it comes to food. Well, trust me, I have “DESERVED” (she says with a very sarcastic tone) a whole lot because as I said earlier, I way overachieved on the physical side of growing up! I need to come up with a better reward system in my mind. (Preferably one that doesn’t involve spending money or else I just open myself up to a different problem!)

I am a pre-diabetic 50-year-old woman with Fibromyalgia, Depression, ADD, Essential Tremor, GERD, Anxiety, IBS… shit I’m stopping there, that’s enough disclosure for one blog post. Why was I saying that? Oh yeah, I said all that because with all that going on, if today is not a good day to start getting healthy, what will it take? Do I really want to go to the doctor and be told I am diabetic? No.. no I don’t.  I definitely don’t want to hear that come out of my doctor’s mouth. I think I have heard her say enough already.

Today… right now, this very moment. This needs to be the moment I start taking better care of myself. I have a goal of 5,000 steps a day. (Don’t judge, I barely hit that once a week.) How about if I challenge myself to hit that 3 x a week? It’s not much, but it’s a good start. I actually went the entire month of April without any desserts/ sweets… then May hit and let’s just say, I didn’t just fall off the wagon, I think I fell off and have been getting dragged behind it for weeks. I’m telling you… as I write this, right this second, my emotional side has already started the fight. It’s telling me to go cut a slice of that chocolate cake in the fridge and eat it… it’s basically screaming at me to go do it. Bitch. Why do I have chocolate cake in my fridge you say? Because the other night I craved it so bad, my husband went out and surprised me with it. I will overcome that stupid Emotional Me and make better choices. I should not let my emotions influence my decisions. It never ends well when I do that.

I will choose to eat healthier. I will choose to move more during the day. I will choose to live in the moment and not worry about tomorrow. I will have faith that tomorrow will work itself out. I’m not in control of it anyway. I will think positive  thoughts. I will meditate to calm my brain. I will believe in myself. I will be healthy. I have to believe that with hard work the outcome will be less pain, less depression, less digestive issues.

My moment starts right now. I can do this. And now that I’ve said it out loud (or written it for all to see), I hope I can come back with some results in a future post.

Before I go, I want to say a huge thanks to Healthline for including me in the Best Fibromyalgia Blogs of the Year for the 6th year in a row!! It’s an amazing honor to receive this recognition. Take a moment to go check out the other blogs on the list.

Thank you so much for stopping by today. I wish you a pain-free day and feel free to join me in this quest for better health.

Gentle hugz.

Tamiko

PS. My girlfriend gave me a beautiful bouquet of flowers for my birthday. In the bouquet were these ginormous peonies. When these flowers start to open up and bloom, you really have to pay attention because it all happens in a day or two and once the flower opens up, the period of time to enjoy it is very short. This is what I mean by living in the moment. I put the bouquet right next to my desk so I could enjoy the beauty of these amazing flowers. Now you can enjoy them too!

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

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

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!

buddy-to-do-list

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.