Day 17: Learned the Hard Way…

What’s a lesson I learned the hard way? Hmmmmmm, which lesson do I choose? There are so many possibilities.

A lesson I keep learning… the hard way… is that exercise makes a difference. Another lesson? That my diet makes a difference. It’s like I know what I am supposed to do, but my brain says otherwise. Take my meds everyday at the same time, manage my stress, manage my time… there are so many things I know I should do. So I guess I haven’t really learned my lesson(s)… yet.

I would have to say the biggest lesson I have learned is the “overdoing it” one. I am much better about stopping when I should, not over committing, holding back when I want to get something done. I realize the consequences of my decision mean I will be out of commission for days on end if I don’t restrain myself.

My perfect day on Sunday, we went to the zoo. Normally I would take my cane, but I knew there was no way I could make it from the car to the entrance without my pain making it so uncomfortable it would start the day off badly. I used a wheelchair. This is letting go of my pride to the infinite degree. I really just had to accept this was the only way I was going to get through the day and have fun. I can tell you, I was simply exhausted at the end of the day. The wheelchair saved me, but it didn’t alleviate the pain or exhaustion. I thought I’d experience less pain, but I didn’t allow it to ruin my day. I also didn’t overdo it. I had my perfect day.

It’s so easy for all of us to overdo it. Overdoing it can mean vacuuming the house or washing the clothes or making dinner. It could mean working a normal 8 hour day. Living within our boundaries is not easy. Trading one activity for another could mean working and not participating at our child’s sporting event. It’s not fair, but these are the decisions we are faced with. We need to feel okay about it or we tear ourselves up for it. I am not a bad mom, a bad wife, a bad employee… I’m not a bad person. I am someone living with a health issue and I’m doing the best I can.

The lesson I learned (and continue to learn everyday…)? Balance. I can say I’m sitting about even, feet dangling off the see-saw. I definitely have my up days … and my down days. I have learned, but the actual daily practice of this balancing act is crazy hard.

What about you?

Thanks for stopping by.

Tamiko

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

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

Wow! I am thisssss close to getting my 10,000th hit on my blog. TEN THOUSAND!!! That is crazy awesome!! For my 11th day of this Health Activist Writer’s Month Challenge, I decided to re-blog my very first posting as myfoggybrain. We’ve all come a long way and I’m so grateful to everyone for supporting my writing. Here’s to another big moment in my life!

THANK YOU!
Tamiko

The F word… Fibromyalgia

October, 2009

I have learned so much in the last 18 months. Things I could have gone a lifetime without learning… and quite frankly been okay. In the last 5 years I have been to the doctor off and on so many times I have lost count. I have felt stupid, crazy, frustrated… but for all of you out there who have gone through this experience, I don’t have to tell you. You already know. You have the F word too… FIBROMYALGIA.

Once you are diagnosed with the F word, you may feel like you are getting closure but it’s really only the beginning of your next F phase… FRUSTRATION. You thought you were getting out of that phase… but NO! At least not me. This, I have found out, is a medical condition that has no cure, no visible signs that you are not well and has not been 100% accepted by the medical field. WONDERFUL. “Welcome to the the F world people, hang on to your seats, this is going to be a rough ride!”

Whenever I see people who know I am not feeling well, I feel like I should look like shit so people will accept that I feel like shit. I should paint all of the places on my body that hurt a bright pink so that it will be obvious. Instead, my lucky ass, gets to be the one who can no longer finish the simplest sentences or remember what I was doing 5 minutes ago or even 5 seconds ago. Noone gets that brain fog has anything to do with the F word, people just think I’m stressed out, exhausted or just stupid. My foggy brain is a world I seem to live in 99% of my life these days… I can remember when I was smart. I can remember the days when I could actually train a room full of adults. Today, I’d have to play charades just to get through my first sentence presenting to a room full of first graders! So now you know my 3rd F word for today… FOGGY.

What I really hate? All the support groups that I went to online thinking there would be good ideas to help me feel better. What I found were too many online support groups with a bunch of sad people talking about how miserable they are…  in the end I got horribly depressed. Not to mention all those F’ING (my 4th F word for today) QUACKS trying to sell the miracle drugs that will cure us in 6 weeks or less!  Seriously… I’m in pain and in a brain fog… I AM NOT COMPLETELY STUPID!! These people have got to be stopped. I mean seriously… put the money towards research..

So what am I telling all this for? After taking 5 years to get diagnosed… 18 months after being diagnosed to finally get into a treatment program… that is 6 1/2 years of my life. That’s pure craziness! I am ready to take control and help others as well. Blogging seems to be the thing these days. I just wanted a place for me to share my journey with this crazy thing called Fibromyalgia.

This is my first blog and I hope it helps others. I am here to learn, share and network. I hope you share with me as well…

Thank you for reading!

Some excellent sources of information:

What is Fibromyalgia: http://chronicfatigue.about.com/od/whatisfibromyalgia/u/Fibromyalgia.htm

National Fibromyalgia Association

WebMd: Fibromyalgia

Day 8: Best conversation I had this week

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!

 

Rinnnnnnggggg (not really what my phone sounds like since it’s a mobile, but I have no idea how to get that translated here)…

Me: Hello?

Man on phone: Hi this is Dr. X calling, we have a phone appointment scheduled today. How are you doing?

Me: I’m doing okay, how are you?

Dr. X: Well I’m doing good. I understand you had an appt with your primary care physician and she has referred you back to us here at the Pain Clinic. So, it doesn’t sound like you are really doing “okay”.

Me: Well, yeah… I never know what to say when people ask that question, it’s kind of a default answer. I have been in a horrible flare for the past few weeks. I don’t really understand what the trigger was, I can normally attribute it to the weather or an event. This time it’s has come and doesn’t appear to be going away… thus the appt with my dr. Normally I don’t go in or call because I know there’s nothing she can do for me.

Dr. X: Yes, I understand. With your situation, it’s a good thing that we are talking again. I know how hard it is to manage day to day and your right, your primary care dr. is probably at a loss. I spoke to Awesome Nurse (I’ll call her that, because she is) about your case before I called you and she mentioned what the two of you discussed the last time you spoke. We both felt it would be good to talk to you about some of the changes going on here.

Me: Okay.

Dr. X: Since you went through our Pain Program, we have made significant changes. We have a new Psychiatrist here and we have revised the program completely. We have introduced a group support structure and incorporated movement strategies into the program. We have very good results and the success rate so far is pretty high.

Me: This sounds interesting… and the conversation continued for another 15 minutes.

When I first saw this prompt for the Health Activists Writer’s Month Challenge, I was a little wary. More than a little, I was thinking this is one of the days I’m going to miss. No conversation stood out that I wanted to share… no good conversation I should say. My dr.’s appt was pretty disappointing earlier in the week and I’ve been in so much pain I haven’t really been conversing. This call that happened today gave me hope. Dr. X explained this program and how it works, the intake process and really gave me a great feeling. He said he’s seen people that have been in pain for a very long time, people like me he said, that have tried everything and he felt like they had really seen life changing differences after they completed the program.

He said that people on medication and rely on it, people that want to get off their meds, people that don’t want to take meds… basically whatever choices people have made about meds, it doesn’t effect their participation in the program. He told me that they don’t judge or discriminate, at the end of the day their goal is for people to be able to live better lives. A holistic approach, not just to “fix” something, but to change the way we are able to live. Part of the intake process and the program overall is to help determine what each individual needs, whether it’s medication or emotional support or whatever.

Like I said… I have hope and I can feel that sunshine again. I trust these people. They gave me life before. The Kaiser pain program is amazing. If you have one, and you are a member… I really encourage you to get a referral and jump in with both feet. You will be in a pain friendly environment where you will not be judged and most important… you will be BELIEVED.

I’m looking forward to this opportunity. I’d say wish me luck, but I have faith and that trumps luck every time!

Thanks for reading.

Tamiko

Day 6: Myfoggybrain Haiku

I’m on day 6 of this Health Activists Writer’s Month Challenge. So far, so good. I am loving that folks are reading and it’s been nice to have something to look forward to at the end of the day. This was a fun exercise for me. I don’t think I’ve written a Haiku since I was in elementary school. I had to relax my brain enough to allow a bit of creativity. I hope you can relate!

Frustrated again

Depressed, exhausted, in pain

New day tomorrow

Family – Friends – Love

Beautiful life without pain

Faith – Strength – Patience – Joy