MyFoggyBrain Nominated for WEGO Health Award!

A great thing can turn a frown upside down! I had a pretty stressful week, but then I received this in my email:

WegoHealthNomination

WOW! Now that is super cool! Getting recognition for my blog is such an honor. It feels strange to post this, but what the heck… If you would like to endorse me, please click on the “Endorse MyFoggyBrain” underneath my picture:

https://awards.wegohealth.com/nominees/14250

All blessings go to all of you for supporting me over the years and helping me get through the toughest days of my life. THANK YOU!!

Wishing you all a pain-free day.

Gentle Hugz,

Tamiko

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

Anyone Else Exhausted?

IMG_9952I can’t believe how quickly the holidays came and went. We put our Christmas tree up the first or second week in December and bright and early December 26th the ornaments were off and the tree was on the street! I’m back to work after a week off between Christmas and New Year’s and… I am exhausted. You know when babies get so exhausted they just start crying for no reason? Or how about when kids are so exhausted they get angry and frustrated for no reason, remember that? That’s me right now… except I’m 50… not a baby or a small child. I have been going and going for so many weeks I can’t do it anymore. I thought for sure this holiday season I would pace myself. I actually got a lot more done in advance than any other year, but I noticed my energy level just keeps going down. My ability to turn things around after a stressful situation just takes more and more time.

Someone say stressful situation? My day started somewhere around 2:30 in the morning when I woke up with a jolt. This was not about pain… the whole house was shaking… can you say EARTHQUAKE??!!! After only a couple hours of sleep, I got up and started working. My work day consisted of several hours trying to resolve system issues mixed with attempting to get my work done. Can you say frustrated? I managed to finish working and planned for a relaxing night… let’s see… I clogged the kitchen sink and my beautiful aging dog left me a nice post-Christmas gift in the bathroom. Did you catch that? She went to the bathroom… IN my bathroom. Usually when she does something like this (which unfortunately is happening too frequently these days… poor baby) she kinda sneaks away and hides. This time she stood there and stared at me as if to say, “who in the world would do that to you? that’s so f’d up!”. It’s almost as if she was feeling my frustration and providing moral support… to clean up her mess.

Why am I sharing all this? I am exhausted. I know things are not good when I start feeling the blackness start to surround me and today I sensed my mental state starting to really spiral downwards…  So I decided to fight. In the midst of the crappiest day in a long time I chose to get up and get on the treadmill. It’s been weeks since I last exercised and today instead of allowing my depression to win, I fought back. I’m not saying that I am no longer depressed, but at the very least I did something for myself that was good. There’s the silver lining in my day. I need to end my day with gratitude.

Speaking of gratitude (it’s one of those days… my mind just bounces from one topic to the next)… We have plans to go on our first family vacation this year! I mean a “get on a plane and fly to Hawaii and stay in a super nice hotel” kind of vacation! I cannot wait!! I have 8 months to get my act together or it’s going to be a … “get on a plane and fly to Hawaii and stay in my super nice hotel room IN PAIN” kind of vacation. Nobody wants that. So! It’s time to get it together. I know that this kind of change is not going to be easy, but I commit to being kind to myself. I am not going to be perfect, I will not always follow a strict diet and I won’t all of a sudden run 5 miles every day… but I can do my best and make better choices. As long as I know I am doing my best without compromising my happiness, that works for me.

Now for a completely different topic (although it eventually ties together)… I went to the beach with my daughter last week. She’s only here for a short period of time before she goes back to college. Mother/daughter time is very special to me. We don’t have these opportunities very often. She is figuring out where she fits in the world and she is fighting for her independence. I remember what that feels like, I couldn’t wait to move out of my folks house… so like a complete idiot, I moved out at 18. I’m not saying it was the dumbest thing I have ever done, but I never realized how much my folks did for me. The biggest gift they ever gave me was letting me go without a fight. I don’t know how they did it. They hardly ever questioned any of my decisions… and I can’t remember a single time they turned their backs on me. They watched me move out and struggle and every single step of the way they lifted me up when I was down. There were so many moments in my life when they carried me on their shoulders for long periods of time… and they did it without me even realizing it. If i could be 10% as good to my children as my parents have been to me… that would be amazing. It’s an overwhelming emotion when you step back and look at your life and realize the people who have been your strongest supporters. Without a doubt my folks have been there for me every step of the way. The fact that they allowed me my independence as a young adult forced me to learn so many things in life. It’s time I take the blessings they gave to me in my life and share those with my children. The challenge is really letting go…

 

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I completely lost focus there! Me? Lose focus? No way! Getting back to my original point (I told you i would tie this all together). I went to the beach with Kiyomi last week and I took this picture of her with our dog Tani. To me this picture signifies how small we are in God’s beautiful universe. I realized that what I call “problems” are so small in comparison to what is going on in other parts of the world or even just down the street. I have a home, the best family and friends in the entire world, I have a good job with a manager who understands my health challenges and supports my work/life balance and I have a relationship with my son and daughter that far exceed any expectations I ever imagined. What the hell could I possibly complain about?

So! I started out telling you how exhausted I am. Trust me, I am still exhausted. It just  doesn’t matter how exhausted I am… how much physical pain I am in or how depressed I am, it’s up to me to do something about it. I choose to live my life. I’d rather hang out with friends in absolute pain then sit at home alone in pain.

I will have my bad days, but let’s hope 2018 brings an abundance of good days. That is my wish for all of you. I wish for you all to have more good days than bad and I wish for you to live your life to the fullest. Laugh! Feel the joy of friendship and experience the fresh air and sounds of whatever you love in nature. I, personally, can never get enough of the ocean.

Thank you for stopping by!

Gentle Hugz.

Tamiko

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

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…

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

Let Go and Let God… Be Blessed!

4:44am… this is the time i woke up this morning. Every time I sit down to write I feel like I start with the mindset of how crazy life is… or how much of a roller coaster I feel like I’m on with the pain and emotion. 4:44am… for the last few weeks I keep waking up between 3 and 5 in the morning. Most days I force myself to stay in bed. I read or just lay there and eventually I doze off for another hour. Today I decided I’d go downstairs and check my blog.

It’s such a blessing to me to see how many folks visit my blog and to those of you that take the time to share your thoughts, I say a ginormous (I love that word)… THANK YOU! I still can’t get over the fact that over 35,000 people have stopped by. This is definitely one of the life accomplishments I am most proud of. Quietly proud as I don’t really talk about my blog. I have been asked many times for interviews… I’m more than happy to contribute via email or writing up something for a specific purpose. The times that I am asked for interviews over the phone or video… I feel very honored, I just can’t bring myself to do it. This blog is so personal to me, it’s like my private diary… for many years I wrote anonymously. The thought of talking out loud about it completely freaks me out. For the most part I only share what I’m going through with all of you. I trust that you all know what I’m talking about, what I share is nothing surprising or new… it’s meant to be validation that we are are not alone in our pain.

IMG_0041These last few months have been … well, they’ve been painful in so many ways. We lost an amazing, AMAZING woman much too soon in life. She taught me so many things over the years. This loss has been so very painful. It’s not as if you can put a number to the pain one feels when losing family or friends. Without Jennifer and her daughter, my best friend, I would never have accepted God into my life. I would have never known what it means to be a gracious host or how to make a table look bountiful and beautiful. Jennifer gave me tips on everything from simply how to make my hair look shiny, how to cut vegetables, how to handle itchy skin (Sarna lotion does wonders) to the most complex things like how to raise children and how to read the bible and Believe. It was an honor to be by her side the last few weeks of her life. She died with dignity and she showed me yet another lesson… to the end she fought to be independent. She had a strength in her spirit that even in her last days she wanted everyone to know that God is the final answer, not doctors. Only God knows the path and timing. Let go and let God. A very strong message and one that so many of us forget. Thank you for that and so much more Jennifer. There are hundreds of lives that you touched, many of them children that you helped to raise and mold into the wonderful human beings that they are today. What a treasure.

Also, these painful times bring out the best and worst in people. Thankfully I have the most giving people in my life. When in need, I know I can count on these women to lend a helping hand. My way of healing is always to stay busy and give in some kind of way. Friends just doesn’t seem enough of a word… my family of friends have come together countless times now to put together memory boards. It is during these times I am able to quietly grieve and creatively pull together a lifetime of memories through pictures and scrapbook pages to share. Working alongside these beautiful souls makes my days so much easier. There is no way to ever thank these ladies enough for the help, the meals, the friendship. To know what I’m going through… and with very limited communication… these ladies just say “What can I do to help?” and then they show up at my door. It’s amazing. They are amazing.

There have been many sad and challenging events in the past weeks. Some I have handled well, others not so well. But I have done my best and that’s all I can hope for. I can see the world changing before me and I am really trying to move with the changes. I am not that small child who can lift my hand to my mom and dad for help. It’s my turn to help them… or at least I feel like it should be my time to help them… although let’s be honest, at my age I do still turn to them for guidance and support. And in their moment of need… like a grease fire in their kitchen. Instead of asking me for help, they are telling me to focus on grieving and helping my friend and not worry about them. I can only hope that my husband and I can be half the parents mine have been to us. If we are supposed to make our children better, my parents have definitely done an awesome job with teaching my husband and me… and our children… and those people that have taken advantage of their life experiences and wisdom. So when I lift my hand to my mom and dad, although I’m not that small child… I do still and will always look up to them.

IMG_1795There are days when I want to just curl up in the fetal position and get in bed, pull the covers over my head and close my eyes. But I have to face the challenges and accept that we are getting older, we are all getting older. Age brings the knowledge that life is precious, tomorrow is not promised so we need to try to live each day as if it is our last. Don’t have regrets, focus on what is most important. What is most important to you? For me, it is my family and friends. My goddaughter’s senior night, taking pictures of my daughter and her friends before the homecoming dance, spending those precious moments with my son just talking… spending the day with friends and family in the city. Going to quilt festivals and crafting. And yes, even taking time for myself to relax in front of the TV and catch up on my General Hospital (stuff is about to get real with Jake/Jason!).

It always comes back to this for me… count your blessings. Okay don’t count them, you don’t want to focus on numbers. BE blessed. Just be blessed. Let yourself enjoy life and focus on the good and not the bad. You will have pain of all sorts, but do your best to overcome it and spend your days feeling the best you possibly can. Laugh as much as you can, I hear it’s the best medicine. :)

Have an awesome day!

Tamiko