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

What Would It Take To Make A Change In Your Life?

“I can’t WAIT for this week to get over!”… I hear myself saying that during the work week a lot. The week-end comes and I spend a lot of it in laying down trying to relax and get re-energized for Monday. I sleep, I sleep a lot over the week-end so I can be ready for Monday. What happens on Monday? I work and spend that time wishing for the week-end. Does this make sense to anyone? It’s crazy. I spend Monday thru Friday waking up at 5:30 or 6, sometimes 7 if I’m lucky, roll out of bed, quietly creep down the stairs, make some coffee and start working. I don’t usually stop working until 6 or 7 at night. I may take a few minutes to eat lunch during the day and a few minutes at night for dinner with the family. I will then work until 8 or 9 some days and then watch t.v. and go to sleep around 10 or 11 depending on my pain and just doze for hours off and on until the morning when I do it all over again. During the days Monday thru Friday I am in a lot of pain. By Friday I am in a lot lot of pain, but that’s what I do I, I work.

Yesterday I started thinking, if I had a year to live, what would I do differently? I mean, seriously… what would I do differently? What about 6 months? A month? What would it take to really make a change in my life? ? I always say tomorrow is not promised, so why do we always live like it is promised?

Right now my life is all consumed with working to pay the bills and I work, work, work. I work all the time. I work so much that nothing else happens in my life. I have fibromyalgia. Wait, let me say that again. I have Fibromyalgia with a big “F”. I don’t let this condition rule my life, but let’s not take this lightly. It does make a statement and it does affect my life and that of my family, so I should make sure I give it some respect here. Back to what I was saying. I have Fibromyalgia and with that, at the end of the day between work and being a Fibromite, there’s not a lot of me left to go around. The energy has been spent and there is definitely nothing left.

Is it possible to work and still have a life, while living with chronic pain? It is not easy. I have it easier than a lot of people. I work from home on most days. I go in the office 15% of the time, maybe 20% in a busy month. I work a lot of hours, which is challenging, 12-14 hour days. So let’s talk about this… Balance is the key to a content life, right? Getting there and staying there probably means being organized – not so easy when you are a fibromite or me (“I’ll take some foggy brain whipped up with a little bit of ADHD to go please“). I love [read hate] those people who are so TOGETHER with their “checklists” and their “tote bags” always on time. Let me stop, I’m not hatin’ on anyone. I keep trying to be together, it just never works out that way. It does, however, give me a reason to buy a new tote bag! But, seriously, I do believe that in order to get through the day, you need to have a serious amount of focus and stop working at a reasonable time and focus on your family life or your health or your personal life. Whatever it is that is important to you. Focus, is not easy when you have foggy brain, it is something that is a constant challenge – I do create my check list and it does help keep me focused (for awhile anyway!).

Live your life as if you only have 6 months to live or whatever amount of time it takes to create a change. I need to really spend some time thinking about this. I think we get complacent and just live. There is so much going on that I just go from one crazy day to another and I need to carve out some time to be still and have time to myself. I have been in a flare for weeks, I need to get on my flare plan and exercise and eat better. Take one thing at a time, not overwhelm myself. What about you? What can you do to manage your pain better?

If today was your last day and you look back on your life, are you happy with all the decisions you have made? What changes would you make? Now’s your chance!

Stay cool! Hope you enjoyed your visit to my blog and come back again. Leave a comment and tell me what you think.

Tamiko

Fibromyalgia and Creatively Finding Your True YOU…

Topsy Turvy (album)

Image via Wikipedia

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!