To those who are family and friends of Fibromites

To those who are family and friends of Fibromites –

I am a Fibromite. You don’t know me, I hope you allow me this moment to share with you how it feels to be me. I am not here to complain. I am not here to vent. I am here to help you understand.

I have Fibromyalgia.

It is a diagnosis. It is not a life sentence. It does not define me.

When you ask, “How are you?”

My honest answer is, “I am in pain.” but I will no doubt say, “I am fine.”

Invisible Disease.

Look at me. I appear fine on the outside.

Come closer, I walk with a cane. I am in extreme pain. If you talk to me, I have a hard time finding the words to form a sentence at times. My memory, well I don’t rely on it. Look at me.

I struggled for 5 years before I was diagnosed.

5 years. Back doctors, foot doctors, Internal medicine, Scans, X-Rays, doctor visit after doctor visit… and feeling frustrated, alone, helpless, desperate.

What does it Feel Like?

It is different for everyone. My arms and legs are heavy and when I try to move them it’s like they have been beaten to a pulp. They shake at will. My feet at times feel like they are asleep, but multiply that nerve pain x 100. My shoulders and neck are sore, just really super sore – like they are saying “please whatever you do…. don’t move” and the side affects from my meds are making my vision go awry. My jaw is sore. It feels like I went through a cycle in the dryer… got hit by a car… did a flip on a trampoline and landed on cement… I’m thinking you get my drift.

What’s that? You ask if I am available for dinner? When?

I hesitate. Planning is never easy for me. How do I know if that damn flare will appear or not? How many time times have I had to cancel? Too many to count.

Where Am I?

I am home. I like to pretend I am “relaxing”. I sleep and I rest. I am safe at home. I don’t have to pretend I am not in pain or have energy. I don’t have to hold my head up. Sometimes it’s lonely.

“I worry about you”

I hear you. I do not want you to worry about me. I do not want you to feel sorry for me. I want you to support me. Exercise with me. Push me to do the right thing for my health and when I’m down, laugh with me.

All Good Things Come in 3’s

I haven’t met a Fibromite who only has Fibromyalgia. I also have Major Depression and ADD. I have my down days and I feel like someone stole my palm tree away from my beach. I can get distracted while, wait a minute did you see that? I hate taking my meds twice a day… every single flippin’ day. Don’t ask me to do the same thing over and …. oh what a pretty butterfly! I am tellin’ you, what a trio of conditions God has gifted me with!

Although life is not always easy, this is the life I was gifted. I accept it and so must those in my life. I have a great support system and those around me are wonderful.

I hope you have learned something from my thoughts today. Please leave your comments and thank you for stopping by!

Stay Cool!

Tamiko

What Would You Do? Stand Up For Your Pain!

The cameras are rolling…. All eyes on you…. You have probably seen the TV show, “What Would You Do?” I was going to blog about a situation I was in a couple of weeks ago. A truly, stupid situation that I needed some time to get through, mellow out and say to myself, GET THE HELL OVER IT! I wanted to vent and get that shit out of my system, but it would not have helped and it would not have helped any of you! I have to keep reminding myself every hour, every minute of the day to stay positive these days. It’s a challenge, but sometimes that’s what one has to do. Right now, that’s what it is. Prayer and giving my cares and worries over to God is what I’m doing.

My life has been seriously out of balance. Work has been crazy busy – way too many hours. Family and friends close to me are in need of God’s healing hands. The weather has been crazy, mostly rainy and cold. I’ve been in a constant flare for what seems like forever – it’s only been a few weeks. For the first time in a long time I have increased my dose on one of my meds. It sucks, I don’t know if any of you feel this way, but increasing meds makes me feel like a failure, like I’m not managing my pain like I’m supposed to. I agree to a certain extent that I shouldn’t feel that way, but at the same time, I also feel I should be in control of my body. FMS is a crazy place to live. Depression has stolen a lot of my mind the past few weeks and I really want it back. I have fought and fought and fought, I FINALLY feel like I may be starting to come back, it’s so damn hard. It’s like climbing up hill through quicksand (because I have done that before, right?). Trust me, my family really, REALLY prefer the not deeply depressed mother/ wife over the scary/ ugly mean lady that’s been living in the house lately. She scares me too.

Speaking of my family, well specifically my husband… I am not CO-dependent, I am SOUL-dependent (and yes I meant to spell it that way) on (on? of? to?) my husband. I have been blessed with a husband who takes wonderful care of me. He does everything for my children and me. He literally does all the cooking, cleaning, driving, care-taking… this man does my hair, when my daughter isn’t doing it! He also deals with all that comes with chronic pain and depression, oh yeah and let’s not forget – throw in a little bit of ADD. What an effed-up combination! After almost 25 years together he has to be wondering what the hell he signed up for!! There is no return policy here. He had 30 days, but those days have passed and he’s now stuck with me. Thank God!

So! I started out talking about a TV show that puts folks in really awkward situations. A show that ultimately pushes those same to people make uncomfortable decisions. Now I ask you, when you are in a situation where you need to stand up for your pain, do you? Do you stand up for your pain or do you end up suffering? I made a decision to stand up for my pain and I also ended up suffering because I stood up. I am happy I made that decision because I was able to really see some true colors come out.

At the end of the day, most of us can barely stand up for long periods of a time, so why suffer any more than you have to, right? I mean, c’mon! Please do yourself righteous and STAND UP FOR YOUR PAIN!

Thanks for reading! Please tell me what you think, leave your comments and, as always, stay cool!

Tamiko

This Too Shall Pass… I Am Blessed.

Wow… Where have I been? It’s been over two months since I have written something… and to be totally honest, it’s been over almost that long since I have even visited my blog page. Six months ago, if someone would have said I would let that let that much time pass without viewing my page, I would have just ignored them because I would have thought to myself “NO Flippin WAY!”. Well, it’s true. Now that I’m here, that old familiar feeling is back. It’s the middle of the night, I’m sitting in the dark, on the couch with just the dim light from my laptop…. except this time… same couch – different house.

Where do I start? My life, my life, my life… Lord, I know You do not shoulder more than one can bear… I. Just. Am. So. Very. Tired. I really do try not to complain, I know there are people so downtrodden and their lives really suck, I know I have no right to complain…

Here’s the deal… let me bottom line it for you… I feel like I am starring in a country song where you play it backwards to figure out everything that has been lost (I should win an award for this one!)… I am just not mending… I don’t even know how to mourn anymore. I know hospital emergency rooms and intensive care units up and down the west coast and unfortunately so do my children. What started out as a good learning situation for my children when they were young, has turned out to be a continuous cycle of “Whose Funeral Are We Going to This Month?” … Scarred for life.

Where the hell was I going with this? Oh yeah… I was bottom lining it… let me get back to it…

So! Important in a Chronic Pain Patient’s life… Truth. Honesty. Well in anyone’s life, but more so in a chronic pain person’s life because you spend your entire life explaining your pain to people who do not believe you!

Shortly after the passing of my very close friend Steve’s passing, I lost my Godfather which seemed “suddenly” to me (way too soon as I just really wanted more time!)… Very close after that… we had a traumatic experience with a dog that we were really hoping to adopt (all of my 4-legged blogger friends would totally relate to my experience but Lumpy is in a happy home now!) Well, my son entered college and turned 18 and then my husband and I found out we needed to move out of our house we had lived in for over 10 years. We had less than 2 weeks to vacate. So! I found us a house to rent and we packed up our memories and our furniture and moved to our new “home”. That was the 1st week of November… and did I tell you I was on disability and went back to work the second week of September?

For those of you that were around my blog last year… I was blessed to get out and help pick the tree this year and my husband and I trimmed it this year!

I have this horrible feeling there is a big ass dam inside my body somewhere secret stored up and it’s just going to open up one day… God help the folks that are around on that day. Poor souls… I have a huge smile on my face right now… because Lord knows, all you can do is smile when you think about the poor souls who will have to deal with my ass when I unload on them!

So, now that you are caught up with where I have been and what I have been up to since the last time I blogged….

After all I have been through…

my family still makes me laugh at least once or five or ten times a day.

My parents are still with me and I thank God every single day for this.

I am blessed.

I still have my brothers, sisters and their families and my friends and their families around me.

I am blessed.

I still have my five senses.

I am blessed.

(Ummm I did not say I HAVE sense, don’t get crazy here).

My husband still wakes up every morning and goes to sleep to me.

I am truly truly blessed.

I have fibromyalgia, ADHD and chronic depression and yes…

I am blessed.

For me, it is important to remind myself to remember what I have and to do my best to stay positive. Please be positive with me. There’s enough negativity out there…

Thanks for reading! Stay cool…. and God bless all of you and Happy Holidays!