Tag Archives: invisible disease

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Another Day in the Life… It’s Good to Laugh… at Yourself.

Well hello there… how have you been? I can’t believe it’s been almost two months since my last post. Well, actually I can, I just don’t really want to. Where have I been you ask? I have been traveling through the land of Myself, specifically the area of “Feeling Sorry For”. I don’t really recommend this place, but if you have to go there try not to stay as long as I have. I had been given ANOTHER f’ing diagnosis with no cause or cure and it just put me in a downward spiral that left me feeling like WTF?! Instead of taking this news and putting more emphasis on managing my health I basically went on strike. I stopped doing anything related to all these fun and fabulous no cause/ no cure conditions I have. Literally, cold turkey. No reading, writing,  journaling, looking at my blog, exercising… yeah, I showed… ummmmmm… myself? Yeah, that’s it! I showed MYSELF! Dumb, dumb ,dumb…. I went on strike and who exactly was impacted by this? Me. Oh and by the way… Essential Tremor, this is the newest addition to my list. If you have an uncontrollable shaking of your head or hands then you may want to look into this. I guess having an invisible disease, the thought was… I should have something that folks can see, yeah let’s make her head shake (it’s really more like a nod). Ahhhhhh, someone up there has a sense of humor, I’m just trying to find my way to see the lighter side of this.

On the more sunny side of this place I have been in for the past month, I have been watching my diet. I was also diagnosed with gall stones a couple of weeks after my Essential Tremor diagnosis so I had my gall bladder removed last week. Finally a problem that has a solution! Yes, it meant having a body part removed, but I am really hoping that this resolves a lot of my GI issues I have been dealing with for a long while. In watching my diet, the last few weeks I have been drinking protein shakes as a meal replacement for two meals a day. Incredibly, this has helped a lot. It seems like the only time I feel somewhat okay is when I drink the shakes. Food and I are still having a love/hate relationship. I love to eat, but the food and my body hate each other. This is really uncool, can’t we all just get along?

I have rambled a bit, but what really prompted this post is this funny (well, funny to me) thing that happened yesterday. My first instinct was to tell my husband, but he’s on a short trip away and I didn’t want to intrude on his time away. I would have texted him, but I don’t have the patience to type this into my phone (another device I have shied away from lately). Anyway! Back to my story (I am so easily distracted!). I have been trying to lose weight, the real reason for the shakes… yesterday I am in the bathroom weighing myself and I saw the number on the scale and I was like “What the hell?? WOW! No way I lost that much weight!!” Seriously, I’m standing there and my weight has dropped like 5 pounds overnight. At this point I’m trying to figure out how this could have happened… could it be real? Then I look up (since I’ve been looking down at the scale this whole time) and realize I AM HOLDING ON TO THE TOWEL BAR. Yes, as I’m quite sure you can all relate, standing up sometimes is challenging without some help. Well, don’t weigh yourself while doing this or you’ll go through this same fun experience. It’s like winning the lottery (okay, granted a small one – not the Mega Bucks one) and then waking up and realizing “Nope, still not a millionaire”. At this point I gently let go of the towel bar and the little scale thing moves, moves, moves to that point of reality. I have just woken up. I started laughing and thinking, oh man, I gotta tell my husband this one! I can see him shaking his head at me as I write this. I’d like to say lesson learned, but I’m afraid I’ll probably do that again, so I’ll just say it’s good to laugh at yourself everyone once in a while.

After enjoying some time with my folks, my incisions were screaming in pain (it’s hard to relax or move with all that screaming), I gave in and took some pain medication. I told my daughter this so she was aware and then did a few chores and went to sleep. I was KNOCKED OUT when all of a sudden I hear my door open, not open quietly mind you it was opened with purpose and my daughter comes rushing in and says to me, “Did you hear that? Did you hear that?”. Let me just restate… my husband is not here. My heart starts racing and I’m trying to wake up and this damn fog from the pain meds is holding me back… fear just grabs a hold of me as I try to be the grown up in the room. She continues on, “It sounded like a werewolf…”. Not what I was expecting. I am pretty sure I responded with something like… “Am I awake or is this a dream?”. Did she really say… werewolf? I think maybe she should not be allowed to watch that new Teen Wolf show. I mean, this can’t be a normal thing to rush in and ask in the middle of the night, right? Okay, so I’m pretty sure she didn’t hear a werewolf, but if there had been one, I would not have heard it (another reason why I don’t like to take meds that make me drowsy). So I’m like, “Why don’t you just sleep in here?”. Instead she takes the dog out of my room, goes back to her room and leaves me wide open for attack. I thought my solution was better. I’m completely freaked out, yet I’m so tired I just fell back asleep. Interesting experience, that’s what drugs do for you, put you to sleep so you don’t have to face the world… on that note, maybe I should ask her when she wakes up if that really did happen… but it had to because the dog was clearly NOT in my room when I got up this morning.

I bet when you decided to read this you weren’t expecting this! I hope I’ve given you a reason to smile today.

Stay super cool and remember… one day at time, one hour, one minute. I wish you all an awesome day of wellness and hope!

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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Day 26: Health tagline… Invisible Illness… Visible Me.

Today’s Prompt: Health tagline. Give yourself, your blog, your condition, or some aspect of your health a tagline. Make sure it’s catchy!

my foggy brain

invisible illness… visible me.

My life with Fibromyalgia, Depression and ADD.

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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

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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

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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