fibromite

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Amazing… MyFoggyBrain and The Mighty’s eBook

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

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

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

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

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

Gentle hugz,

Tamiko

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

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The View From My Room

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

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View from her dorm room!

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

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

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

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

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View from our room!

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

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

Thanks for stopping by!

Tamiko

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Happy Fibromyalgia Awareness Day!

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

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

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

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

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

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

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

Gentle hug,

Tamiko

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Be Blessed… Accepting Your Limitations

Soooooooo…. another doctor’s appointment come and gone and once again I left the office with no answers. Today I went to the audiologist to see if there was any reason why I have this constant high pitch tone flowing through my head 24×7. OF COURSE I waited many, many months before going in… and OF COURSE I left with the same answers I have 90% of the time I go into the doctor’s office… and that is OF COURSE — NO ANSWERS!! Oh wait, I did get one answer… a referral back to my PCP. Woohoo!! Well, let me find the positive in this. I do not have any loss of hearing. And trust me, no sarcasm… I do appreciate that something is working the way it is supposed to! There’s a positive for every negative, right?

What a time in our lives… our daughter is graduating from high school in about six weeks. Damn. SIX WEEKS!! (I have no idea why I am using so many caps, I’m really not trying to yell at you.) I forget how much is involved with these graduations. We are in the process of selecting a college. When I say “we”, I actually mean “she” with a little help from us. She just had her senior prom… she’s planning a senior trip… we are planning her graduation party… senior pictures… college commitment/ housing/ budgeting… CALGONNNNNNNNNNNNNNN take me AWAYYYYYY!!!!!! (only those of you that are on the older side will remember that commercial… here’s a link for your viewing pleasure.)

IMG_4270It’s times like this when I tend to forget I am not physically able to do it all. For every one busy day, I tend to have two days where I’m down. Lately it’s been a lot more down days, than able days. We drove up to Eugene, OR to check out the University of Oregon. An amazing campus. The drive up was very nice, but sitting in the car is not easy for long periods of time. We knew it was going to be tough so we made several stops along the way… we took our time. Accepting my limitations in this instance made all the difference. When we arrived in Eugene, I was doing okay. Whew! The next day, however, was a bit trickier. We had scheduled a tour of the campus for 10:00am. We arrived early so we wouldn’t be stressed out, again planning in advance… what we couldn’t plan for was how fast the walking tour was. This tour guide was very enthusiastic. To make things even more challenging it was very cold outside. So just picture a very brisk walk for 90 minutes in and out of buildings, up and down stairs and in the cold… This is where I tend to not speak up. I don’t want to be a burden or slow a group down so I stayed the course and I made it through. I was really proud that I made it. The rest of that day IMG_9659and the next morning… MAN DOWNNNN!!!! What can I say? I did my best and we actually accomplished everything we wanted to. We just did it in our own time and tried not to stress. We made it home and I was able to rest up for a couple days before going back to work today.

I know there’s a lot coming in the next couple months. I just have to keep reminding myself that it’s okay to ask for help and it’s okay if everything is not 100% perfect. It will be the best we have to offer and as far as everyone is concerned it will still be great! The thing is… it’s not about me. It’s so easy sometimes to just get all engrossed in how crappy I feel, I have to remind myself that it really is NOT about me 99% of the time. It helps to remember that although I am in pain and struggling with depression/anxiety… it could always be worse. Like I could be losing my hearing!

It really has been a rough year. I have struggled with my depression/anxiety a lot this year. For one reason or another, my flares are closer and closer together and they seem to last longer. I know I can do better with taking care of myself, but as you all know, it’s damn frustrating living like this. To have a week without any kind of pain would be amazing. To be able to take time off work for vacation and not be sick… what a concept!

Listen, I realize each day is a challenge living with Fibromyalgia and Depression and Anxiety and Essential Tremor and GERD and ADD and… oh wait, sorry, lost my train of thought. Anyway! I realize every day is a challenge living with all the crap we live with, but we just have to remind ourselves to accept our limitations and remind ourselves of the blessings we have each day.

Which leads me to … I am still journaling every day! I haven’t missed a day without snapping a picture or journaling. There have been a few days where I have just put a picture because I was too sick to do any more than that… but I have kept up the practice of journaling every day! Find something that helps you think about the positive in your life. As I look back through the pictures I have snapped since the first of the year, I can’t help but smile.

Thank you so much for stopping by and please have a blessed day!

Gently hugz…

Tamiko

 

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How has Fibromyalgia Affected You?

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

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

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

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

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

Tamiko

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How Honest Are You?

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

girl-150102_640“I am not feeling well”

“I am exhausted”

“I am in a lot of pain”

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

“I don’t have the energy for that”

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

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

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

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

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

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

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

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

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

Stay cool and relax… Gentle hugz!

Tamiko