Day 13: 10 Things I Can’t Live Without

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!

I like this prompt, it makes me realize how blessed I really am. I have all of this in my life today and as long as I have God in my life, anything is possible. What a great way to start the day! Imagine a life without Tivo or my laptop or the internet … it actually seems kinda nice.

God

My family

My friends

Laughter

Freedom

Books

Music

The beach

Blue Skies

70 degree weather

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 10: Dear 16-year old me…

Hey girl,

You have experienced a lot in your first 16 years. I am writing this letter to you to share with you how I am feeling about where you are in your life and I also want to spread a little knowledge from my life experiences. Knowing you, it will take some time to digest any advice to determine whether or not it’s worth your while to pay attention to it. I understand, all I ask is that you read this letter through to the end and keep an open mind.

First, let me tell you how I see you as a person, and honestly, how I believe the world sees you. It’s important, for me, that you hear this from me as one of my hopes for you is that you never question these things. I get that, at your age, it’s difficult to deal with all the pressures socially, educationally and emotionally. Just know that you are loved, most importantly.

  • You are beautiful. Don’t let anyone tell you otherwise.
  • You are strong… you are so strong. Don’t let this strength get in the way. Don’t confuse strength with pride. Strength will hold you up (with God’s help) in difficult and challenging times. Pride will pull you down if you let it get in the way. It’s okay to be wrong, and it’s even better if you can admit it (out loud).
  • You are giving and loyal. These are awesome attributes and will bring wonderful people into your life. Save that loyalty for those that treat you with the respect and love that you deserve.
  • You are smart. You are smart. I’ll say it again… You. Are. Smart. Give yourself a break. You do not have to know everything. It’s okay to ask for help, it will make your life easier if you learn how to ask for help now vs. when you are older. People want to help you, you just have to let them in.
  • Spontaneity is a wonderful thing… keep it up!
  • You are intuitive, use that to help yourself and others. Use that when making choices that may change the course of your life… those choices that will make an impact in just one moment.

Below are some of the things, looking back in my life that I’ve learned, that I hope will help you grow as a person…

  • Your life is precious and it’s a gift. It can be taken away at any moment. Push all the negative people, images, stuff away and close the door on it. No need to let that back in your life. If someone or something is not bringing joy or uplifting your spirit or teaching you something that will make you a better person… remove them or it from your life. It may not be easy, but you will feel better without that negativity.
  • Give people a chance. They will make mistakes and there will be times when you will get hurt, but your true friends will always be there for and with you through thick and thin. It’s not the quantity of friends in your life, it’s definitely the quality. I truly believe less is more when it comes to friends. Invest your time in friendships that don’t involve manipulation, lies, judgement, insecurity…
  • Take the time to enjoy life. If you are always worrying or wishing for what you want to happen next, you are not able to enjoy what you have now… and I believe you are blessed. You have a lot to be thankful for.
  • There’s a time and a place for everything in your life. There’s a time to work, a time to learn, a time to play, a time to rest…  keep a balance so at the end of each day, you feel good about yourself.
  • Watch the world around you and take the good from what you see. Leave judgement to God. Everybody is human, makes mistakes, has a bad day… or just maybe needs a friend to uplift them. You can do that, do your best to uplift others, not judge, criticize, embarrass… Treat every person you meet with respect and dignity.
  • Love yourself and others will love you. Treat yourself kind.

The reason why you feel down and you have a difficult time in school is not because you are crazy or because you are stupid or because you can’t hack it… you have Depression and ADD. It’s not the end of the world, you can manage your mental health so that you can be successful. Educate yourself.

You only get one life, make wise choices so you will live a long, healthy, happy and content life. Your friendships and relationships with family will support you through the good and the difficult. I hope and pray you will marry a man who you will be happy with every day. Someone who you can share anything and everything with and build a forever live with.

I have learned many lessons the hard way. The most difficult has been believing my body would always be there, no matter how I treated it. This, I can tell you, is not true. I am a middle-aged woman with the body of a 90-year old. I have Fibromyalgia now and I believe one of the main reasons is because I didn’t keep a balance in my younger years. I worked and worked and worked until my body said “NO MORE!”. What I worked and worked for, at the end of the day, was not worth what I am dealing with now. I could have spent more time with my family, I could have spent more time reading a book and relaxing, I could have traveled more… there’s so many “I could have’s”. I hope you take this to heart and make different choices in your life.

Most important… have faith. With God on your side, you can do no better!

God Bless you.

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 7: TUI… Talking Under the Influence

Do you TUI? I was thinking in the car today about the effect pain has on my communication. I realized I TUI, “Talk Under the Influence” and that’s not really a good thing. I’m talking about under the influence of PAIN. Sometimes it’s mental pain, but most of the time it’s physical. I get that there are not a lot of moments when I am not in some kind of pain. I try to manage my way through and be the best person I can, but being my “best” does not always result in … well… even a “decent” conversation by any standard.

So what happens? Most the time I fake my way through conversations, I have talked about that before. That works in most situations. Where it doesn’t work is in my relationship with my family. I generally muddle through and after think to myself, “Why did I say that?” or better still, “What did I just say?”. These moments are not fun for anyone. Reacting in a negative way to a simple question or blowing up over nothing… a better word to use would be – OVER reacting. In this situation everyone is frustrated. My kids look at me like I’m an alien from another planet, while I’m wondering (in the moment) “What the HELL is going on??”. I know I’m under the influence when the conversation goes:

Me: Please go XYZ

Child: ok

Me (5 minutes, okay maybe 2 minutes later): Why haven’t you XYZ?

Child: Chillax mom

Me: WHAT? What did you say to me? Why are you talking to me like that? Why haven’t you done what I told you to? When are you going to do it? Screw it. You’re grounded!

Child: Why do you always get so mad at me? I didn’t even do anything!

Me: … well words can’t really explain how I feel at that moment, mostly I think my heads going to pop off my neck at that point… until about 10 minutes later when I’m sitting there, alone. Wondering… wondering what the hell just happened.

Talking Under the Influence can really hit at anytime. I don’t usually know I’m doing it. The most telling factor is when I’m mid-sentence or mid-thought and I forget what I’m saying or even what the conversation is about. I can’t figure out the next word. Foggy brain in the purest form.

I get that relationships are challenging under normal circumstances. Add in a chronic illness, both pain and depression, and it’s not really a recipe for success. It takes patience and hard work. Work requires energy, which most of the time is non-existent (I’m talking about never having energy… work? That’s always there!). A pretty dismal picture when you think about it. I’m sure I’m not the only one who wants to give up at times. You have to really play the entire movie out at this point… so…. you throw in the towel, what do you have left? In my case, I’d lose my support system… but most importantly I’d lose the love of my life. Is it possible to start over or maybe even… refresh a relationship? To give up, to me, means that I have let this shit win. I won’t allow that. I realize most relationships end over issues with communication. I know this is always going to be a challenge, given our circumstances… the bottom line is I have a choice. I have a choice whether or not to give up and walk away (albeit slowly walking with a cane) or to fight for what is important and totally and completely worth saving. Don’t give in to those bad moments, step away and start over and try again. I have to keep the faith and fight (crazy expression… fight, that’s what got me into this situation to begin with, isn’t it? :).

It’s challenging to live life within the rules, dreams and goals I have for myself, when this outside shit keeps wanting to take over. I can have a great day, get out and about and have a fun joy-filled day… almost always, the following few days are filled with pain reminding me what I have… as if I’d forget. It’s most difficult to keep my head up during those days. I get angry and frustrated and it certainly doesn’t motivate me to keep going. I can spiral down that slide to the bottom of the well, far easier than I can climb myself out of it. It’s non-nonsensical. It’s important to keep perspective. What do I have in my life? I have family and friends who love me, I have the best kids in the world (I really do) and a wonderful husband. Things are tough and will be tough, once again it’s how you get through this shit that makes the difference.

I may TUI, but if the people around me realize what I’m working with, I just keep praying they’ll continue to love and support me. Keep in mind, if you can look back and realize the moments when you TUI, it may help you understand where things may have gone wrong in a conversation. Admitting that out loud to the people who you have had those conversations with… well, that’s another story! :)

Best of luck. Thanks for reading!

Gentle hugz.

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