journal

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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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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…

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Wellness Workbook – Journaling your way to a healthier life!

It’s finally ready!!! I have been working on this Wellness Workbook for a while now. To be honest, I created it over a year ago and I am just now finalizing the document and sharing with all of you. Like many of you, I have tried many different medications, diets and I’ll call them “gimmicks” to alleviate my pain. At the end of the day, what works is what most of us already know… diet, exercise and most important (in my mind)… the ability to relax and manage our stress.

I originally created the templates in this workbook for myself as a way to document my goals for better health and, as important, hold myself accountable to working towards achieving those goals. I pulled it together from all the various books and materials I have read over the course of the years, various classes I have taken, and my personal experiences.

wellnessworkbookIncluded in the workbook:

  1. Wellness Wheel: tool used to help you discover opportunities for an improved quality of life and create goals based on those areas.
  2. Wellness Plan: worksheet for documenting your short and long-­‐term health goals and listing up to four key goals in the areas that you want to work on that will help you achieve your overall short and long-­‐ term goals.
  3. Flare Plan: worksheet for documenting the tools that help you, both physically and mentally, when you are in a flare. It helps to document these so you can just flip to this page and use the tools that you know will help you.
  4. Exercise Quick Reference Sheet: there are countless exercises you can do to help with your pain, these are just some of the stretches and strengthening exercises I use on a daily basis.
  5. Reference Information: information to help you better understand how to use the daily worksheets.
  6. Daily Wellness Journal: worksheet for you to document each day; your exercise, food, pain level and how you addressed your pain, gratefulness and memorable moments.
  7. My Priorities for Today…: worksheet to document your personal and work priorities on a daily basis.
  8. Automatic Thoughts Worksheet: template to help you manage your stress and negative thoughts.

I hope that it helps you as much as it has me. Please feel free to share with whoever you feel might benefit from this type of resource, I would just appreciate if you would send them to my blog to pull down the latest version. You can either click on the image above or go to my Tools & Resources page to download the workbook.

I would also love to get your feedback so I can continue to make improvements. You all know best what it takes to manage your health and I love to hear new and creative ways to have better days.

Stay cool and keep on smiling!

Hugz.

Tamiko

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Your Feedback Please… My Latest Wellness Journal for Chronic Pain

I only have so much brain power. I mean, as much as I’d like to multi-task, learn something new every day, solve problems of all sorts… I only have so much brain power. So how am I using it these days? I’ve been spending a lot of time creating a Wellness journal of sorts. It all started when I was participating in the Pain Program at Kaiser. I needed something to help me transition from this program to the real world where there was only me. Only me to hold myself accountable, not a support group every day or the doctors I don’t want to let down… just me. I have to continue on this path to a quality life by doing daily exercises, working on my diet, managing my stress with meditation and relaxation exercises… practicing everything I have learned! Just thinking about it doesn’t work for me. Writing down what I have done enables me to hold myself accountable AND celebrate my successes.

So… I created this document to hold myself accountable. It’s similar to the pain journals I have created and posted in my Tools and Resources page. There are many differences though, for one it’s not just a daily journal, it’s also a tool to help me figure out what areas of my health/ life I need to address that are out of balance. I created worksheets to identify my short and long-term health goals, my plan for what to do when I’m in a flare… I included a Quick Reference sheet with exercises that I use on a daily basis. It’s a work in progress. Here’s the break down of what I have included in the set so far:

  1. Wellness Wheel: tool used to help you discover opportunities for an improved quality of life and create goals based on those areas.
  2. Wellness Plan: worksheet for documenting your short and long-­‐term health goals and listing up to four key goals in the areas that you want to work on that will help you achieve your overall short and long-­‐term goals.
  3. Flare Plan: worksheet for documenting the tools that help you, both physically and mentally, when you are in a flare. It helps to document these so you can just flip to this page and use the tools that you know will help you.
  4. Exercise Quick Reference Sheet: there are countless exercises you can do to help with your pain, these are just some of the stretches and strengthening exercises I use on a daily basis.
  5. Daily Wellness Journal: worksheet for you to document each day; your exercise, food, pain level and how you addressed your pain, what you are grateful for that day and memorable moments/ accomplishments.
  6. My Priorities for Today…: worksheet to document your personal and work priorities on a daily basis.
  7. Automatic Thoughts Worksheet: template to help you manage your stress and negative thoughts.

So far, with a much older draft, the Kaiser folks have been encouraging me to publish this Wellness Journal. It’s a little intimidating. But it got me thinking. I want to keep working on this. I want to create something that anyone with chronic pain or any type of health issue can use to improve the quality of their life.

I’m excited about this. I’d love to get feedback on what I have created so far. If you are interested in helping me by reviewing, testing and giving me your honest feedback – I’d love it!

Shoot me an email or leave a comment here and I’ll get in touch with you right away.

Thank you!

Tamiko

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Track Your Progress: Fibro Journal Template

I have been meaning to post up another one of my fibro journal templates. I hope that you are tracking your progress, we all have bad days, but it’s the good days we want to remember. If we can’t remember (Lord knows remembering is not my best skill!), it’s always useful to be able to review where we’ve been, what didn’t work and most importantly… what did work! I know most days we are all just trying to make it through, I believe journaling helps us stop and take a moment for some “me” time. Time that helps us review the day and realize “hey! my day was pretty good!”.

Try it out and please let me know what you think.

Have a most marvelous day (as one of my closest friends always says to me)! Relax and take some time to journal.

Keep on reading.

Tamiko

This is a preview of this template, you can download either or my templates in my Awesome Resources page.