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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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…

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

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

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.

From the depths of Hell, I am coming back to life.

Wow, time flies by when you aren’t blogging! I was doing good for a while and then I hit a real low with my pain and depression and life just seemed to stop. Of course there’s not much one can do when feeling like shit… except of course, obsess about how you are feeling like shit.

Meds can be the best thing ever OR they can just fuck with you, excuse my language. I was on the same med cocktail for years. I knew and know that it’s the integrative approach to managing Fibromyalgia that makes life… well, manageable. BUT, I gotta tell you, my meds were seriously making my life Hell. I didn’t realize how truly fucked up my crisis was until I started really contemplating suicide on a daily, almost hourly basis. I lived through about six weeks of the darkest time I have ever experienced. It has taken me a couple weeks just to really realize how close to the edge I was.

Thank God, and I do mean the big guy above, I had the sense of mind to call for help. I talked to my psychiatrist, I talked to my primary care doctor, I talked to the Pain doctor and nurses and I talked to my OB-GYN. Kaiser was awesome, they helped to save my life. Everyone was persistent in making sure I did something. It was frustrating trying to convey what I was going through, but I spent hours, literally four and five hours scouring the internet for information every day. I was obsessed about the latest news and information on Fibromyalgia, depression and the approaches to manage. I finally concluded I needed to change my meds and thankfully, working with my doctors I pushed hard until I got everyone on the same page with the approach I wanted to take.

You know, I am not sure if it was the pain that aggravated the depression or the depression that aggravated the pain during this crisis. I do know I have been under a ton of stress; the weather was constantly changing, it was raining and then sunny every other day; and Lord knows (as all of you do), that sleep was non-existent. All of this added up to not seeing any light at the end of the tunnel. I felt like I was a huge burden on my husband, family and friends and just couldn’t see how I could live out the rest of my life in that hell.

How could I communicate to anyone that I was feeling like I just needed to get out of my misery? It’s weak, it’s unfair, it’s hurtful… but most of all it’s SELFISH. I know all of this and I didn’t want to hurt anyone, most importantly my kids. This was the only thing that kept me going. I didn’t know how to talk to anyone, I am a very private person – and the thought of showing, what I felt was weakness, was unfathomable. I couldn’t bring myself to say it out loud. After days turned into weeks and the weeks just kept passing and things weren’t getting better – I finally talked to my husband. To be honest, it made me feel even worse. He was so devastated (and rightfully so), I just felt like an even bigger loser with a capital “L”. What the fuck was wrong with me? I know it’s not a weakness to commit suicide, you must have commitment and the strength to follow through with the act – but it is quitting, quitting on life, which is a weakness to me.

Well, I am happy to say, now that I am on the other side of that nightmare. This was not a case of suicidal depression. This was, in my mind, for the most part due to the meds (like 99.99%). I read a lot of reviews from people taking Topamax that they experienced the same thing I did. I felt so thankful to know I wasn’t the only one. Topamax was my savior drug when I first started taking it, and it worked for a long time. I was very confused as to why it betrayed me so suddenly without any indication. This drug has been used a lot for fibromites to help with the nerve pain. If you read up on it, it has all the side effects that are symptomatic of Fibromyalgia. I asked all my doctors how I would know if my issues were due to the medication or my FMS. Each doctor said, it was a great question, and that they didn’t know. What the hell? I wanted answers, instead I got confirmation that my concern and confusion was a “great question”. In the end, the mystery of whether or not the drug was making me worse, the many reviews and the way I was feeling were the basis for my decision to get off that drug.

I decided to take a different approach and manage my depression and my pain separately from a drug perspective. I was on Cymbalta for both and I chose to stop. Again, not sure whether or not that drug was an issue for me as well. Oh my Lord, have you seen all the issues people have with getting themselves off that drug? There is a website just dedicated to all the issues with going off Cymbalta. Thousands of people have provided their nightmares out there on the internet, I was extremely nervous about stopping the drug. But I know that after literally spending hundreds of hours researching options, the one that I have chosen is what I want for myself. The options I reviewed: going all natural and off prescription drugs, I looked at diets, I looked at medical marijuana, I read everything I could possibly find. At the end of the day I decided to go with new meds and a gluten-free diet.

I am now on my last few days of Cymbalta and I am feeling markedly better than at my lowest point. I am off Topamax and I went through one cycle of PMS without feeling like I was in the pit of Hell (for the first time in at least a year). I have taken five weeks to cycle off Cymbalta, I decided to take it much slower than the doctor advised based on everything I read. I went down 20mg a week and I don’t think I felt any major side affects. At the same time I slowly started and increased my new anti-depressant. I am also on my third week of being almost 100% gluten-free. (I am still learning what it means to live a gluten-free life.)

Due to the interactions, I have had to wait to start taking my new pain medication until I am off the Cymbalta. It hasn’t been easy but, trust me, I would much rather have pain than the depression I was experiencing. It’s been a worthwhile process. I am starting to see friends again, which is a sign for me that life is becoming bearable. After months of living in greys and black, I am starting to see shades of color.

The lesson I learned is that I should never feel suicidal. No matter how bad things feel or seem in my mind – suicide is not an option. I need to review my meds on a regular basis and make sure that they are working. I know that I have clinical depression and that I need to manage it. I am responsible for my own health, I need to take it seriously and continue to make it a priority.

I’ve been reading FibroWHYalgia, (an excellent book, if you haven’t picked it up I highly recommend it), the author Sue Ingebretson says that making “I am” statements is not good for your psyche. I have really thought about that lately and I notice that I say “I am in pain” almost every day. If I am going to manage my thoughts, understanding that what you think is what you are, saying “I am in pain” dooms me to be in pain. It’s a great point! Changing the mindset is another new challenge for me.

This is a long blog, but it’s so important for me to share with you that you need to monitor and manage your health as diligently as your highest priority. You need to watch for signs that something is wrong and not assume it’s “you”, that it may, in fact be due to your medication. I urge you to journal your daily pain and mood levels, in addition to your exercise and what you are eating as well as the medications and supplements you are putting in your body. Keep in touch with your doctors (don’t let them forget who you are!), make them listen to you or get a new one. YOU are responsible for your health and no one but you can determine if what you are experiencing is “normal” to you.

I am a very private person, but I feel strongly that if this can help someone, it’s important to share. Thank you for reading. Take some time to relax, meditate and breathe.

Stay cool!

Tamiko

Fibromyalgia and Creatively Finding Your True YOU…

Topsy Turvy (album)

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Post #500 My Foggy Brain… take 5… annnnnnndddd ACTION!

Yeah right! It’s not really my 500th post, but it is about the 5th time I have tried to write a post for my blog. I don’t know what’s wrong with me, every time I start/stop, start again or even finish… something doesn’t feel right. I’m just not feelin’ it. The vibe is not all good. You get what I’m sayin’… it has to be right, to actually push the “Publish” button! Once the content is out there, I need to feel good about what I’m sharing. I am always honest and give my best when I write and I don’t want to start half assin’ things now…

My world has been topsy-turvy, I always wanted to say that… topsy-turvy… Seriously, my life as a medically disabled on-leave full-time person is very different. It took three weeks just to realize I actually wasn’t working. One week to transition my work away, the second week to recover from the prior week of transitioning and the third week was the last week of the summer before school started, in addition, we had some getting ready to do for a family wedding. Let me just say this past week was the fourth week and I experienced a full-on flare for a few days and then recovery mode. Life definitely does not stop for anything.

I will say this… and this is not easy to say. I have chronic depression and I have had it for a very long time. Shortly after going on this medical leave I fell into a major depression. I have been doing a lot of creative journaling and prayer and listening to my Joyce Meyer podcasts everyday. I can feel myself coming out of it, it’s been almost a month. With the journaling to get clarity about some things about myself and my faith exercises along with my physical exercises and the support of my family it has helped to bring me to a better place.

The reason I shared that with you is to show you that it is possible to go from the crappiest place to a better place … but it definitely takes work. As I sit here and type I realize I actually did do some work to get here. As I smile I CAN say, “I didn’t just sit on my ass for the last 30 days.”. Not that I really did believe I sat on my ass for the last 30 days, but it is so far removed from working 12 hours a day that I didn’t actually realize what I had accomplished until right now.

In “finding” myself (I just laughed when I typed that because a girlfriend and I just discussed this phrase last month and “finding myself” in our discussion meant having an affair to a lot of other people…. so if that’s your definition… let me interject… NOT my definition!!)… okay pay attention, back to what I was saying. In my creative journaling to get to know myself better and find out what I really want out of life I bought a blank journal book and a whole lot of color pencils and asked myself some questions… in case any of you are going through this, I thought I’d share some of them with you, as well as a cool website I am using:

  • I just started with blank pages and wrote out “I Am…” on one page filling in the page with colorful descriptive words that I kept to less than 15 and all positive, on two pages I drew out a big heart and wrote out “I Love…” at the top and listed everything inside the heart… you get where I’m going with this – you can make your own lists to get to clearly define your own YOU.
  • creativity 101: discover, explore+empower your creative genius. This e-course is free and it’s pretty cool so far. Check it out, for all you creative types, there are weekly courses, meditations and you work at your own pace. for a free course, it’s pretty well done. http://www.abccreativity.com/creativity-e-course/
  • My big winner this week was finally, after a year of procrastinating, taking the integral tai-chi class! Why did I wait?? I loved it! It was two hours and it was relaxing, challenging, spiritually uplifting, mentally uplifting, physically I felt better when I left and I’m looking forward to the next class… oh and did I mention it was FREE?? These classes are offered through the local libraries so they are always free. With all the hype about Tai-Chi and Fibromyalgia, now is the time to try it out… you won’t regret it!

To finish my post, I went for a walk tonight with my two beautiful children and my crazy dog. It’s the first time I have done this in a very very long time. In fact, I cannot remember the last time I have gone for a walk like this. I really have to cherish these moments, in a few weeks my son goes off to college and soon I fear I will be “invisible” to my daughter. I can feel it coming… It was really nice to get out of the house and be able to walk for 30 minutes. My crazy, funny dog loved every minute and she kept us all entertained (as usual). I really need to give that Caesar Milan a call… I love my dog, but she has that psycho thing goin’ on whenever she sees another dog on a leash…. off leash she is pretty awesome… well… she has her moments… as long as everyone is off leash she is really awesome… honest, she is. look at her pictures, you know she is! she is totally submissive when she goes psycho… she just has this crazy bark that sounds like she is kujo-dog… all the while wagging her tail and as soon as she gets close to the dog, she rolls over to her back… but how would the other owner KNOW that?? They have to be a true dog lover to know that…. and not everyone is, sooooo anyway… how did I get on this?? oh yeah, I am easily distracted…. anyway… I love my dog and you would too if you met her! :)

Hey, thanks for stopping by and please let me know how you are doing today!

Stay cool

Tamiko

PS. The links and that picture are brought to you by this new fancy function in WordPress that I’m trying out… so I may have gone a little crazy with it… what do you think?

PPS. I am having a difficult time finding a theme that I like… hence the constant changing of the themes… still not loving this one… waiting for one to get published that makes me go WOW!