And the Acting Award Goes To…. YOU! Yes, You with the Chronic Pain!!

These days I feel like I should be going for some kind of acting award. I don’t compare myself to those true to the art, but I certainly feel like I am “on” most of my waking hours. You know what I mean. If you have a chronic illness, you know exactly what I mean. Let’s see… when someone says to you, “How are you doing?”, what’s your response? Me? Well, there’s always the standard response:

“I‘m doing alright...” or I may say”I feel okay…” or

I’m fine…” or sometimes I’ll say

Theatre-stage-curtains-an-001I’ll be alright…” or… or… the list goes on. All of which translates to… “I feel like crap, but I live to get through another day.“.  I depress even myself when someone asks me the question. And, trust me, I’m not saying I don’t want folks to ask how I’m doing, it’s just I never know what to say. Honesty is not the best policy in this case. I don’t really think people should have to hear my truth. In addition, I don’t want to say out loud multiple times a day that I feel like crap. I imagine it would only make me feel worse mentally. Which leads me back to my original statement. I think I am pretty  good at acting. Most of us don’t want the whole world to know how much pain we are in or even that we are in pain at all. To get through the day, we have to put on a happy face so folk see us as functioning people and not just people with pain or disabilities. I don’t want to be the one that people look at and feel sorry for. I want to be the one that is looked at as strong and responsible, caring and able.

Sometimes I think I am so good at this acting stuff, that I convince even myself nothing’s wrong… I can literally act myself into thinking there is nothing wrong with me. Until, of course, I try to live without paying attention to what my body/ mind are telling me. Those are the days that reality slaps me in the face, basically saying, “WAKE UP! Stop just thinking about right now”. I feel like I have to go through the acceptance process of all my medical conditions at least once or twice a week. I know what the diagnosis is (trust me it’s difficult not to know), but when you act like your are completely fine… you act like you are completely fine. If I acted like I was fine while also managing all my medical conditions better, I’d actually be almost fine!

So! What has happened since the last time I blogged?

Damn. Damn… DAMN! I have had tests, more MRI’s, CAT scans, many appts… I did the Prednisone thing. This was the first recommendation to see if it would alleviate the pressure/ pain in my neck (reduces the inflammation). That actually really helped the pain for a few days. I was like a new person, literally tons of focus and energy. It was crazy how good I felt… for a FEW days. Awesome, very much like when I had a epidural while in labor with my son, which literally worked for ONE contraction. There really is nothing worse than feeling the awesomeness of no pain… when you should be in a lot of pain. Only to have that awesome feeling snapped right out of your reach in an instant. So! The Prednisone worked for a few days and then slowly stopped working, but I did end up with the bonus of more pounds on my body. JUST WHAT I NEEDED! yay… (she said super quietly with a lot of sarcasm…)

I had many discussions with the spine surgeon and two separate neurologists and have come to the conclusion that surgery is definitely in my future. With that in mind, I needed a solution for this tremor. None of us want my head to be shaking just out of surgery… that would seriously dampen the entire post-surgical bliss that I’m looking forward to. So! I started a new med. I had a handful to choose from and I made a decision and tried the only one that seemed like it might work with the least amount of side effects (or cause me to have to change my antidepressant)… Well, again, it was good… at first. And then… the side effects kicked in. The kick was a big one. My depression tanked. Tanked as in I fell into that big f’d up black hole. You know, the one that has no bottom and there’s no light at the top to give me hope. It took me a bit to see what was going on. By the time I realized what was happening, I was in too deep. That feeling of hopelessness and despair completely overwhelmed me. I started to back off the meds and ultimately decided I would stop completely. The thoughts going through my head are not worth the benefit of the relief from the tremor. Which sadly, the med did stop the tremor… It’s the choice of bad or deep black hole I’ll take bad any day. That is the end of meds to address my tremor (for now).

So for the last few weeks I’ve been a mess. Working has been like walking through wet cement for hours. (I’m full of analogies today) Attempting to focus with this mental state and my pain levels going through the roof has not been fun. But! I made it through. Today was my first day off the meds and I believe in a couple of weeks I’ll feel much better.

In the meantime, I prepare for my surgery. The mental and physical preparation will take a while for me.

I know God is on my side. With all this stuff standing in front and on top of me, I am blessed with the most wonderful family and friends who stand beside me and on many days who hold me up. I have a job that allows me to work from home, which in turn makes me feel like I am contributing and adding value both at work and at home. I have a plan to address the neck pain/ weakness in my arms and legs. The future is not grey and bleak, it is in fact looking okay. I may be in pain every day and I may suffer from severe depression from time to time, but I am blessed. I do not take the great things in my life for granted.

DSC_0353We just celebrated my daughter’s 16th bday. A celebration that would not have been a success without the help from those closest to me. From the hand-made decorations, to the made from scratch awesome tie dye yummy cake and caterpillar cupcakes, to the candy leis to the cotton candy machine to the best food in the world… this celebration was one to remember… and in less than two months, my son graduates from college. You were all with me when he graduated from high school! Every day is a blessing.

40,000+ visits later, my blog is still going strong because of the support from all of you. I say it again. I am blessed. Thank you for taking the time to read this and leaving your comments and sharing your personal experiences with me. It means a lot to me.

You all win the award for best acting! You do it every day… all day long. It’s not a good or bad thing, it’s just what we do.

Gentle hugz!

Tamiko

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

Happy 2013!

Is it really 2013? Where has the time gone… I have found myself thinking about my blog over these past months and having this strange adverse reaction to coming back to it and writing (or honestly, even looking at it). It’s a new day, a new year… sooooooo I decided why not a new theme? Personalizing a blog is not as quick and simple as I ever think it will be. In my mind… “hey Tamiko, how about working on your blog today? let’s change the theme and post a blog today!”. Ever so excited, I go about starting the process and about 1/2 through… hours later… my mind is now wondering what the hell I was thinking. So, I push myself and repeat over and over, “Persevere! I can do this!”.

I’m not totally thrilled with the themes available in WordPress, so I start thinking… “I should be able to create my own.” Seriously? I sit and think about this for a bit and then realize I am over complicating things once again. So back to the drawing board. Just pick a theme! Okay, check! Theme selected… now I have to customize it. Oh, honestly, I could drag this out for paragraphs. The thought process of implementing a new theme to my blog page and how this brain of mine works. Some scary stuff! At the end, without going into all the crazy details, you can see what I’ve done. Even more challenging is the actual writing. I mean I can attempt to make this thing look as good as I want, but without content, what’s the point? I have had writer’s block for months (as evident by my complete lack of posts for 4+ months). That is not to say I haven’t written anything. I have started many, many posts. Let me say that again, just so you know I really have tried… I have STARTED. Unfortunately, I get an idea… so far so good… I think on it for a little bit… and then POOF! Gone. Sometimes, I even get to the point of sitting down and typing… usually about 25% into it, I completely lose my train of thought. I re-read what I have and just feel like it’s BOOORRRRR-INNNNGGG. So, I shut my laptop and walk away. Frustrated. I decided when I first started to write this blog, that I would not write just to fill the page and post. I only want to share when I actually have something to say. When I need to vent or I feel like information would be useful to others or when I don’t want to feel like I’m the only one with these crazy thoughts, feelings, emotions!

Where has the time gone? August was when I last posted. I have had my good times and bad times over these months, but on the whole… I must say I am doing my best to live. I haven’t had to walk with a cane much and the wheelchair? Getting dusty. Life is always going to bring challenges. The weather is always going to change. There will always be some sad days. I have no control over that stuff. I can only control how I manage my stress, my emotions, what I eat and how much I exercise. The eating part still makes me want to jump off a cliff more than I would like, but I am trying to accept I can’t eat whatever I want. I mean… just because pizza, ice cream, spaghetti, garlic bread, mexican food… let me stop… wait, just let me finish this thought… just because my favorite foods are all enemies to my body… that’s no reason to complain, right? Wellllll… alright, I wont’ complain. Well… I will, just not to all of you. Especially since you are all facing the same stuff I am. I really am trying to find other foods to get excited about. I am not quite there yet… but I have hopes! Soy yoghurt… yay! Kashi Honey Almond Flax chewy granola bars… yay!

Well, at least one thing hasn’t changed. I am still soooo easily distracted! I started out this post with an objective of taking a moment to wish all of you a happy 2013 and congratulate you for making through 2012. Remember to pat yourself on the back for the small wins as well as the big ones. I am happy when I can get out of bed and shuffle to the bathroom in the morning… lol!

I hope you have your 2013 goals all ready to be achieved!I completed my new year’s project in January… new year, new goals:

IMG_4053

Until next time… have a pain-free day!

Tamiko

Happy 4th of July from My Foggy Brain

4th of July… it’s so different now than it used to be. When I was growing up we used to all gather in the street with the neighbors and set off our packs of fireworks. Remember the snakes? I don’t remember all the names of all the stuff in the pack, I just remember how fun it was and how much I looked forward to it as the 4th came closer and closer. We’d go to Spartan stadium and watch this amazing firework show. As I grew older, we’d go to Great America and watch fireworks after spending the day hanging out at the park. After having my son, we’d go park in the parking lot of Great America and watch the firework display while sitting on the cement. The whole family would go with snacks and we’d wait until it got dark and then watch the sky light up. The past few years we have had a great time going to our neighbor’s house and watching the kids shoot off bottle rockets and some big fireworks. It’s been super fun.

We are all at different stages in our lives now. The neighbor’s kids are all grown up, our kids are growing up and my husband and I are… well… all grown up. I still love fireworks, but if I start my day early in the morning to get ready to go to a bbq during the day… making it to the end of the night to fireworks doesn’t always work out.

I appreciate spending the day with family and friends, although the thought of socializing with a lot of people generally terrifies me. It still doesn’t matter how well I know folks, my social anxiety rises to an all time high around this holiday. I have to push myself every step of the way until I get settled at the bbq. Ultimately I am always glad I have gone, but getting there is a very stressful few hours.

I hope you are all enjoying your 4th of July. Remember to take care of you and don’t overdo it so you can remember this day with fond memories instead of pain.

I hope wherever you are, you are able to relax, eat good food and be thankful for the folks around you. I am looking forward to my day and you never know… there may be some fireworks in my future!

Stay cool and relax!

Day 21: Health Madlib Poem… Captain Barbossa and My Gut

I have had one hell of a week. I have been to the doctor just about every day, yesterday twice. I have had my blood drawn three times and I’m waiting for all these results to help figure out what the heck is going on. I have found out I have iron deficient anemia. Now it’s on for the search for where the blood has gone… is going and where it’s coming from. I gotta say, I am happy that there is a valid, medically tested and confirmed reason for why I am so damn tired and having such a hard time focusing. I never go to the dr. for these things as they have become a way of life for me… this was just a very good reminder to check in every once in awhile. Coincidentally, Adrienne Dellwo, writer for about.com’s Fibro/CFS page posted up this article about anemia and FMS the day I found out. If you haven’t stopped by her site, you are definitely missing a crucial tool in your resource box.

Anemia & Fibromyalgia: How’s Your Iron Level?

It’s funny, the doctors and nurses are amazed at how I am still working and generally still somewhat functioning despite the level of pain and this new found anemia. It’s been kinda nice to hear, considering I have been feeling so lazy and dumb for the past couple months. I don’t mean that in a critical way, it’s just the easiest way to say how I’ve been feeling… and it’s true. In actuality, I haven’t really been completely depressed about this (wierd, right?), sadly I think I just accepted the reality of FMS. Maybe some of the realities of this illness should not be accepted so easily.

Figuring out when to call the doctor and when to carry on is so difficult. We are all so used to leaving the doctor’s office feeling like “that was a complete waste of time” (and I usually have a word that begins with F in that sentence even though I am trying not to use words that start with F…). I think we all start to give up on ever feeling good again. I had definitely given up on even thinking I would feel good about eating again. I always feel, for lack of a better term… yucky. I really want to eat something (because I LOVE food!) and then when I do… I feel like crap after. I was telling my husband, it’s like when Barbossa is telling Ms. Turner in his quarters what it feels like to never really live or die and he explains… “The more we gave ‘em away, the more we came to realize the drink would not satisfy, food turned to ash in our mouths, and all the pleasurable company in the world could not slake our lust. We are cursed men, Miss Turner. Compelled by greed, we were, but now we are consumed by it…“, he goes on to say “For too long I’ve been parched of thirst and unable to quench it. Too long I’ve been starving to death and haven’t died. I feel nothing…“. I sometimes wonder if i was on that quest and I took some of those gold coins. Someone please tell me where I put those (as you must know I forgot). I’d like to put them back.

For fun, here are a couple sites to see Barbossa’s quote:

Well, I should get on to what the prompt was for today since I am participating in the Health Activist Writer’s Month Challenge. (Please visit WEGO Health’s blog and the WEGO Facebook page to find other writers tackling the same topics—or sign up for the challenge yourself!)

Today’s Prompt: Health Madlib Poem. Go to : http://languageisavirus.com/cgi-bin/madlibs.pl and fill in the parts of speech and the site will generate a poem for you. Feel free to post the Madlib or edit it to make it better.

Well….. I did this. I followed the prompt, went to the website and I gotta say… not impressed. This isn’t the best use of my blog, but I’ve already used my two “get out of post” cards.

This is the poem as it was turned out by the madlib…. like I said… not impressed. I look forward to the next prompt.

mysterious dog’s mysterious dog

ccarefully i have never imagine, loudly beyond
any bed, your fibromyalgia have their funny:
in your most adventurous palm tree are things which endure me,
or which i cannot listen because they are too quietly

your clumsy look somewhere will unovercome me
though i have photograph myself as rainbow,
you pretend always doctor by doctor myself as park sleep
(understanding accidentally, absentmindedly) her beautiful flower

or if your toy be to whisper me, i and
my hammock will escape very painfully, courageously,
as when the banana of this bed gather
the beach irritably everywhere promiseing;

nothing which we are to reach in this kitchen talk
the car of your quirky mom: whose dad
walk me with the sister of its brother,
runing illness and depression with each danceing

(i do not dream what it is about you that wish
and write; only something in me believe
the grandma of your fibromyalgia is strong than all park)
grandpa, not even the caterpillar, has such amazing monkey

- sing & e.e. cummings

Day 16: Pinboard…

The prompt today is to create a pinboard for my health. I created one just before I joined this writing challenge. I have been posting most of my prompts from this challenge there.

My three favorite prompts so far in the challenge are:

Day 5: Ekphrasis Post… WHAT? Ekphrawhatis? #HAWMC #Fibroymyalgia #Depression

Day 7: TUI… Talking Under the Influence of Pain #fibromyalgia #depression #HAWMC

Day 11: THANK YOU! Remembering my very first post: The F word… Fibromyalgia #HAWMC

Short and sweet today… it’s been a rough one for me. Rough or not, I can’t forget to wish my dad the very best birthday in the world!! Without him, I would never have this ability to communicate.

Take care everyone!

Tamiko

Day 15: My Writing Style…

Today’s prompt: Writing with Style. What’s your writing style? Do words just flow from your mind to your fingertips? Do you like handwriting first? Do you plan your posts? Title first or last? Where do you write best?


In a perfect world, I truly love pen to paper. I am easily obsessed with stationary and pens and journals and all things paper. Put me in a stationary or nice card store and I’m in heaven. I would love to have hand written all my blogs and have them in a nice journal to reflect upon now and again. The reality is, I can no longer write without pain. Add to the pain that my writing looks horrible these days and it only leads to frustration and emotional pain for me. It ends up being just another reminder of what I’m facing on a daily basis.

Not to wallow in despair over this… I’m laughing to myself at that sentence I just wrote… “wallow in despair”? Seriously? I digress for a moment, but bear with me as I have been watching a lot of PBS Masterpiece Classics and Mysteries. I love Inspector Lewis, Downton Abbey, Sherlock Holmes… etc. I think I may have picked that up somewhere. That is definitely not something you’d just hear me say on a daily basis.

Getting back to the topic at hand, I am not sure what my writing style is. I try to stay positive, I’d love it if people smile or laugh when they read my blogs. I don’t beat myself up if I tend to have a down posting now and again as that’s what life is. Life is not always rosy, but my goal is always to end on a happier, positive vibe. I never want people to visit my blog and leave sadder or more depressed. There’s enough of that in real life, I believe most of us with these invisible diseases want hope, something to make us believe there are solutions out there. We want to know people are living successful, happy lives – or even “living” life at all. I mean getting through each day with some type of success to celebrate, small or large. It keeps us going.

When I am writing (or should I say typing?) My mind generally goes super fast and I have a difficult time typing as fast as the thoughts are coming. Many times I’ll be typing and half way through my mind will just go blank. Maybe it’s a signal to stop and review what I have typed so far, maybe it’s just my brain deciding it’s gone on overload and needs to reboot. Whichever it is, I either review and throw it away, re-focus what I have so far or keep on going after making a few edits here and there.

I don’t have planned days to blog. I am very inconsistent and go through phases where I don’t even look at my blog for months. When I am in a flare or particularly bad time of depression, I don’t really want to write. The words would only depress me and everyone else. I just don’t have the energy mentally to pull it together. This writing challenge has definitely been a true “challenge” for me. I am proud of myself for keeping up with the prompts and I have made it a goal to get through these thirty days. It’s been very pleasant and more relaxing and fun than I thought it would be. I find myself thinking about the prompts throughout the day.

On all of my postings, I will wake up thinking about something I want to write about or during the day I’ll mentally have a topic pop up in my head. I will think about it and mentally write something in my head and in the end if I am really feeling good about it I’ll jump on my laptop and start typing. There are a lot of days where I just think about a topic for hours and end up not writing anything – or I’ll start writing and decide I don’t really want to complete the post. I admire authors and writers tremendously for their ability to focus and get through writing a book or people who keep coming up with fresh ideas for their blogs. It’s not easy to hold people’s attention. Especially these days with anything and everything at your fingertips on the internet. When I hit the publish button on my postings, I always have a feeling of “did I just do the right thing?”, “will anyone read this?”, “did I say anything I shouldn’t have?”, “Am I the only one who feels this way?”. Receiving the positive feedback from people is always reassuring.

This blog, my diary of my journey with Fibromyalgia, Depression and ADD has helped me in so many ways. I hope, if you haven’t started a blog, this inspires you in some way to start one up. It’s not as much about readership as it is about self-realization through the writing process. It’s a great way to express yourself and help those around you… your family and close friends to understand what you are going through without having to articulate it verbally. I am not good at talking about what I experience and this is my way of communicating. I know my dad reads these postings aloud to my mother and it really makes me feel good to know I have my best supporters with me on this journey. My husband reads and comments to me each time I post something new.

Well, I am about to go and have my dream day… a trip to the zoo with the fam. I’m really looking forward to this day! I wish all of you a wonderful Sunday and hopefully this will be your dream day too.

Gentle hugz!

Tamiko