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…

Make 2015 a Better Year!

First things first… Happy 2015!! I bet we can all look back on 2014 and… well… sigh. This can be a sigh of happiness, sadness, relief.. or just a sign that we are still breathing. 2014 was a heck of a year. One thing I know for sure… 2015 is going to be better!

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My 2014 memories/ 2015 goals project

I had a new year’s resolution in 2014 that I would blog at least once a month. Fail. I had 10 goals that I outlined at the beginning of the year as part of my annual family project. Let’s just say that I believe I achieved two of those goals. While we worked on our project this year I paid more attention to identifying achievable goals. I didn’t do the copy/ paste/ then change the words goals that I have sometimes been setting in the past. This year I want to be able to say I accomplished at least half of my goals. (I will be honest and say I did keep the “finish resume” goal that I think has been on my list for the past 10 years. This year I am determined to achieve this goal!). To the right is a little picture of my completed project. I really look forward to doing this every year. As the kids get older, it amazes me that they are still willing to do this. In fact, it feels like they are more willing now than they were in the younger years. We added my god-daughter in the mix this year and we had a day full of love and laughter. I can’t think of a better way to start 2015.

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My daughter’s rag quilt…

While preparing for my project, I thought about this past year and the memories I will cherish… my son graduating from UC Santa Barbara, both the kids getting their driver’s license, going to the movies with my  mom, my daughter’s sweet 16, going to Utah to see my dad present his experience in the Japanese internment camp at Weber State and visiting Topaz with his friends… these are all memories that I hope I remember forever. There are also the memories that will stay with me because of the challenge to stay positive in the face of difficult times… supporting my friend when her mom passed away, my mom’s frustrations with her health, friends in the hospital… me in the hospital. Even with the challenges, there’s always the positive. I will forever cherish the incredibly thoughtful gift my  beautiful friend gave to my son as a graduation gift. She took my son’s soccer jerseys from the many years he played and made the most amazing quilt. I took this queen sized quilt and made it a part of my project this year. You can see I printed the picture of his quilt in black and white and added some color to parts of the picture for texture… in addition to this quilt, she also made my daughter and I rag quilts last year. I know I’ve said it many times before… and I will continue to say it… I am so so SO blessed to have such wonderful, supportive, loving family and friends in my life.

I didn’t set a goal for the number of times I would blog in 2015 on purpose… writing my blog does not always come easy. My husband has this very strong belief that I should write more. I love the strong support he always gives me… but I value your time as readers so I am… wait… stop. Let me invite you into my mind for a moment… I had an ADD moment while writing this… I am pretty sure that just typing the word “blog” twice in this paragraph kicked my brain into thinking… “It’s the beginning of a new year, I am going to change the theme on my blog…”. As you can well imagine, this thought led me to spending hours browsing the WordPress themes and then I actually tried one on for size and didn’t like it… activating the new theme and going back to my original theme completely screwed up my blog so I then had to spend time fixing it back to how I wanted it… I guess that lasted longer than just a moment. It doesn’t stop there friends… while I am going through the themes, I see all these photography friendly themes and I think to myself… “I really need to get my pictures organized…”. Just as I’m about to open up my iPhoto library I pull myself out of the vortex… before my brain keeps going and going and going and… SNAP! I’m back. Damn. AS I WAS SAYING!! Okay, breathe… as I was saying, I value your time as readers (which isn’t actually evident in this particular paragraph)… I really do value your time as readers (now I’ve said it three times so you really should believe me). Getting back on track… you are all important to me and I want to stay true to myself. I have to be in the right state of mind to write. That’s really what it comes down to. I want to spend my time focused… scratch that (I want to be focused but I know my limits!)… I have to be able to set aside a good amount of time to write something that is meaningful to me. It usually takes me hours to write one post. I write, review, re-write, review, re-write… you get it. I’m sure those of you that have your own blogs do the same thing. It’s keeping that balance while sharing my experiences between honesty and positivity. I never want to bring you down. Our bodies and minds do that already. If you are taking the time to visit my blog, I want you to laugh, get uplifted and most of all feel like you are not alone.

Fibromyalgia is such a frustrating and sneaky disorder (I always want to call it a disease but I know that’s not right… but at the same time disorder just doesn’t work for me)… anyway this shit makes me feel like a hypochondriac. I went to the Podiatrist for my foot because I couldn’t walk on it… he gave me a boot, I bought 3 pairs of expensive shoes and weeks later… the pain has moved on to somewhere else in my body. I get this weird feeling like a bee is continually stinging me in the back of my neck… is it real or fake? I go some days feeling like I can climb Mt. Everest (okay maybe just climb a small hill) and other days I can barely get out of bed. I can go weeks having mostly good days and then boom! flare. I guess what I’m saying is that I have to keep reminding myself that my body forgets what pain feels like as soon as it’s gone (even if for a brief moment). I question my sanity… a lot. I feel like I can never say I am feeling good because I’m afraid people are going to think I’m cured… that nothing is really wrong with me. I’ve never really said that out loud. It sucks to always feel so guarded about your health. I think we need to feel safe in expressing how we truly feel without worrying about the future repercussions. We don’t want to have to “justify” or explain our pain. It just is what it is. Some days are good and some days are bad. We need to be able to enjoy our good days to the fullest and not worry about when the next bad day is coming. Right? Right! I think the only person getting in my way at the moment… is me.

I sai101411_Rogue2_180d that all that because over the holidays, like every year I go, go, go to get the house ready, get the gifts purchased and wrapped and make my annual calendars. For the first time ever I didn’t scrapbook the calendar pages. I created digital calendars. It was really difficult for me to let that go and accept that there was just no way I was going to be able to get the calendars done. I didn’t have enough time and I didn’t have the energy. I felt like I should have been able to do it… but my body said… well I think it shouted, “NO!”. So… I listened. I accepted that I do have the many disorders/ conditions/ diseases that are on my medical chart and I gave myself a break. Even on the days I felt good, I knew I would still experience pain – that although it’s not always present, it’s somewhere lurking like a stalker. I don’t want to be the dumbass that is alone in the dark, saying “Come out, come out, wherever you are….”, I’m happy to let it lurk. Those are the folks in the scary movie that always get killed off first. I know it’s there… I’m going to do my damnedest to keep ahead of it. It’s not going to kill my spirit.

So back to my goals… I am going to keep that pain behind me as much as I can, both physical and mental. I’m going to work harder to take better care of my body and mind in 2015. I hope that you take the time to set some goals for yourself. Be kind and honest – set goals that you can achieve based on the reality of your health. Say it out loud… “2015 is going to be a great year!”… and it will.

I wish you all a healthy, pain-free 2015 sharing lots of love and laughter with your family and friends.

Thank you for stopping by!

Tamiko

Great Fibromyalgia Resources Available!

Today I was reading an article in Medscape entitled, “Fibromyalgia: The Latest in Diagnosis and Care“.  I, like many of your I’m sure, have an extremely short attention span. For one reason or another I actually read this entire article… and thank goodness for that! At the very end Dr. Clauw states, “FibroGuide is a free CBT program for FM patients that has been shown to be effective in a clinical trial and can give patients access to CBT treatments to which they might not otherwise have access“.

While reading I realized it’s a good time to remind every one of some resources that have helped me and may, in turn, help you. So enjoy and I hope this information helps you in some small or even better BIG way!

All of these resources, and much, much more, are available on my Tools & Resources page:

FibroGuide: Take the time to check out this link, it’s not just a guide, it’s an application that provides personalized steps to help resolve the specific symptoms you are struggling with at a given time (including tips, worksheets and audio exercises!). This  Symptom Management Program for People Living with Fibromyalgia was adapted from the ongoing work in patient education for Fibromyalgia led by David A. Williams, PhD, within the Chronic Pain and Fatigue Research Center (CPFRC) at the University of Michigan.

Knowledge Center: Fibromyalgia, Chronic Pain & Depression

Here are some “best of” compilation pages:

wellnessworkbookI created a couple different journal pages to help me track my progress, you are welcome to use… I hope it helps you!

For pain relief… laughter is the best medicine! @TheBlogess is AWESOME and when I am down, nothing makes me laugh more than when I read her blog…