Dear Fibro,

I get so far ahead of myself sometimes that I literally have to close programs, shut the laptop down, and turn off everything electric and just sit.

Quietly.

I allow you to overwhelm me because with any semblance of a minor boost of energy, or just enough strength in my body to perform a task, I seize the moment with intense fervor.

See, I never know when you'll rear your ugly head again for a major flare. Hell, I haven't been able to shake the current flare that I've had for months because I kept trying to work my insanely difficult job that stressed me out before I could even leave the house!

Learning to live with your temporary stay in my body (since I'm wholeheartedly believing for Jesus to heal me one day) is a lifestyle change. After years of living a certain way, it's pretty hard to just complete a 180 degree turn. I have so many people with good intentions giving me advice. Eat this. Don't that. Exercise like this. Don't sit like that.

*INSERT BLANK STARE HERE*

Really. Is it that simple? No. No it's not. I would get so frustrated and irritated at myself for "slipping" one day and eating 2 slices of cake. Or going 2 days without showering or eating or even leaving the bed. Oh yeah baby, it's happened on more than one occasion. I'm not ashamed because I'm being real. I say things that others feel they have to keep secret.

Free speech is liberating. I don't care if you judge me. I don't care if you don't understand. And I for damn sure don't care if you talk about me behind my back. I wouldn't wish constant pain like Fibro on my worse enemy. I can't remember the last time I had 100% energy & strength. Maybe I had one or 2 days in September? For a stretch longer than a week it's been since 2010. When my mom, Alex, and I went to Florida for a long weekend that Memorial Day we were humpin' man. Walking, shopping, pulling luggage, running from the rainstorms, and mini golfing in 90 degree heat. Hell, I even played basketball with Alex in that tropic air!

I was definitely tired, and took my share of naps daily while they swam or just hung out, but I had more sinus issues & fatigue than excruciating pain. I was achy, but it was bearable. I'm so happy my mom took us on that trip when she did. We had no idea how "sick" I'd be in 2011. I'm thankful to have a very strong support system in my family. Even my 10 yr old helps me and understands why we stay home so much. Fortunately, he's a sweet boy and hardly ever complains.

I'm not sitting at home having the time of my life. My best friends are Comcast Xfinity and my Acer laptop. They keep me company and occupied. I blog, I research, I write, I search for new ways of generating income. I play social games online, something I have never been a huge fan of. I'm a loner. However, the interaction, is nice. As are the people I've met in Fibromyalgia support groups online. This week has been kinda rough. I'm listless, sneezing, congested, having headaches, insomnia, and lack of appetite all on TOP of the stupid pain.

But like my grandma Emma always told me, if I don't do nothin' else in this life, I better just "keep on keepin' on." I love that woman. Her picture is in my living room. I've never stopped missing her. Probably never will.

It's just about 10:00pm here in Michigan. I'm exhausted. I interviewed a musical artist earlier, and I've been commissioned to write up the biography for the record label. World Shakerz Music. Look them up someday. Instead of rushing through the write up, I had to regroup and take a deep breath. Hence, which is how I ended up starting this post.

And there it is...

Ashara, The Fibro Warrior Princess

Dear Fibro,

Goodness Punk, it's been almost a month since I wrote. December. Cold has settled in which means more challenges for me and my body. Take one step forward and two back when it comes to you Fibro but as long as I keep on keeping on as my grandma used to tell me I win ya' bastard.

Been interesting not working. Difficult financially of course. Thank God I have family and friends to lean on while so many things are pending (appeals, etc.) The relief is the fact that my stress level has decreased by 50% or more! My job is stressful enough, but when you incorporate forcing yourself out of bed, getting dressed for the day and finally getting in the car to GO to work, you're done!

You can't create extra energy with a snap of your finger. You can't decrease the stiffness and pain from mere "regular" pain pills. And my God you can't magically open your eyes and mind to even focus to drive to work because you've had insomnia for 4 days!!! Can you say "danger?"

I love it when people swear they know you, Fibro, and you don't inhabit, interrupt or infect their world

Shout out to my Fibro Facebook Friends. We keep each other sane, strong, and sensible.

Do you know how difficult it is to change your lifestyle 180 degrees? To learn to listen to your body and what triggers certain physical reactions? What to eat, what not to eat, how long to walk, how much to lift, so on and so forth...

Fibromyalgia is a beeotch. And that's all I have to say.

Signed,
Fibro Warrior Princess
Ashara

I'm Having A Moment...

Dear Fibro &$%*,

I'm having a moment.

I'm not lazy.

I'm not crazy.

I'm not making any of my symptoms up.

It's not my fault that my condition can't be "proven" by lab tests or scans.

I know what this is. It's a test. Another test. The same test I keep failing.

Will I crumble into a ball and sob my eyes out again?

Will I yell and cuss and call my mom and vent to her?

Will I ask God those same questions: "Why God Why?" "When God When."

(That's in my best Joyce Meyer voice.)

No.

This time, I'm going to pass the test.

This time, I'm going to completely and totally rely on God. I'm not taking matters back into my own hands.

I'm not working. I can't work.  If I could, then I would obviously because I've worked since I was 13 years old. I baby sat for families at church. Then I went to the mall at 15 and started working at Corey's Jewel Box. After I graduated came Comfort Inn, Atheneum Suite Hotel, Verizon Wireless, Bright House Networks, Kelly Services, Zales, Borders, BCBSM, I was a private nanny for a year; hell I even worked at Chuck E. Cheese.

I. AM. NOT. LAZY.

But I won't do it anymore. I won't push myself into the grave because I'm "making" myself ignore this illness.

Do you know WHY I've had so many jobs? Because I've been dealing with the pain and exhaustion and confusion, and mental stress, and so much more for YEARS. I have to switch jobs when I've taken too many sick days, short term disability leaves, my attendance gets jacked up, or I just cannot handle the pain. I've been "almost fired" from several jobs, "laid off" from a few and literally fired from one.

This cannot and will not go on. I believe God can and will heal me. However, I am NOT going to insult myself or the rest of the Fibromyalgia/Chronic Illness society by saying that I DON'T have this condition.

God didn't make us stupid.

Correction: God didn't make ME stupid. I can't speak for the rest of you yahoo's out here.

So many doctors don't want to "touch" Fibromyalgia. The Rheumatologists that I've had so far don't seem to be willing to "vouch" for disability. They seem to think that meds and exercise automatically will solve everything and in 2 weeks (or whatever) I "can go back to working" at a high volume, high stress call center where I sit 8 hrs a day tied to a phone taking 60+ calls.

Did I mention stress is a MAJOR factor in Fibromyalgia flares? Oh, I'm sorry, did you say, "Well, get a non-stress job"?

Are you serious?

Name one job that's non stressful. Go ahead...I'll wait.

The defense rests. No further questions.

I write because I am a writer. My frustration is best taken out on you, the culprit, Fibromyalgia, in the form of the written word. You don't have to like my blog. I really don't care.

I have nothing except my faith, my family, and my frankness.

I'm asking for donations guys. I'm raising funds to pay my heat and lights, to pay for my internet to blog, to buy groceries, and to purchase gifts for Alex this Christmas. I can't do this alone. I've tried. I've failed.

Thank you to all of you who have given from your hearts already. I hope one day, I can return the blessing.

I'm having a moment.

I won't cry. I won't cry. I won't cry.

Love,
The (still fighting hard) Fibro Warrior Princess
Ashara

Dear Funky Fibro,

Your a** has been working my ever livin' nerves today.
I have been on the most insane, emotional carpet ride...and I didn't even take any 'shrooms.

The pain was worse today. No reason why. At least, no reason that I know of. I made myself walk outside, for 15 minutes, with my cane. I moved slower than a drunken snail. Crazy right?

It's always worse on my right side. My right ankle and wrist were very sore. I'm pretty happy with what I accomplished with that walk though. Alex is always happy to see me waiting for him at the bus drop when he gets off. Of course, he runs ahead of me to get to our apt. Hell, I wouldn't want to be seen with the Crip Walkin' Mommy either. My feelings aren't hurt.

Mom came by with more groceries. I feel so horrible that my parents are spending their hard earned retirement money on me! I can't give them anything because I do not have ANY money coming in. You should see me scour the internet for "freebies" everyday. Coupons, samples, I take lengthy surveys to get e-rewards for gift cards. *Shaking my head*

I was on the verge of a serious dip into depression this morning thinking about all of the obstacles I'm facing. My job. The approval (or rather non approval) of disability at this time. Doctors appointments. Christmas for Alexander. The bills piling up. The fact that there are so so many events that I've missed this summer because of you, Fibromyalgia, and the ones that I will more than likely miss coming up.

New Edition will be at the Fox Theater New Years Eve. My God. That is my favorite group EVER. I've been to every reunion concert since 1996. One year, I even went ALONE, and sat in the 3rd row. I had the time of my life. Not only do I not have the money to go this year, but I doubt I'll even have the strength to go.

That in itself, pisses me off to the highest of pissivity.

So, what do I do? I immersed myself in God's word. Everyday I'm here at home, I watch Joyce Meyer, Marilyn Hickey or someone like that. I lay in bed reading the Bible on an app I downloaded for Android. I pray. I don't holler and scream. I talk to God like I talk to you, Fibro. This morning He reminded me:

Philippians 4:6

*The Message (MSG)

 ^6-7Don't fret or worry. Instead of worrying, pray. Let petitions and praises shape your worries into prayers, letting God know your concerns. Before you know it, a sense of God's wholeness, everything coming together for good, will come and settle you down. It's wonderful what happens when Christ displaces worry at the center of your life.

God basically told me to simmer down, and let him take care of me. Before you knew it, donations started rolling in, and tears were rolling down my face. To know that my plea for financial help from my cyber community of colleagues was heard just blew me away. Who knows what they may have had to sacrifice in order to bless ME?

Pride is a bitch, man. And as a Capricorn, I have a lot of it. Swallowing that pill hurt. It's amazing how you can have so much going for you one day, and be in the valley of the shadow of death the next. Oh sure, I know there are others who are worse off than I am. I wish I could help them. But I can't help myself right now.

Troubles don't last always. Thank God. I have to pass this "test."
Patience. Trust. Endurance. Faith.
I think tomorrow I'm going to tell you what I think some Christians probably think about me and my "lack of faith" as it relates to my healing and "deliverance" from you, Fibro. It's funny...I digress.

It's almost 1am, I've got yesterday's episode of Days of Our Lives aimlessly playing in the background, I'm hungry, sleepy, and wired all at once. Who DOES that? Oh, right.

Fibromyalgia. Bastard.

Thank you all for taking the time to read my rambles. Many thanks to those who have already given to my support fund. I sincerely appreciate you. I have a long way before I reach my goal, but I believe that it will be met before the end of 2011.

I'm doing the best that I can. My grandmother, Emma Leroy Peyton Evans, always encouraged me to no matter what, "keep on keepin' on." I got you Nana. That's what I'm doing.

Signed,
The Fibro Warrior Princess
Ashara

*The Message (MSG)Copyright © 1993, 1994, 1995, 1996, 2000, 2001, 2002 by Eugene H. Peterson

Dear (not!) Fibro, 


What up, Punk! 


I made it through another day. Thank you God!! I'm always in pain. All. Ways. 
Thing is, I am a fighter. Hence the song on this page. 


Philippians 4:13 (Whole Chapter)
I can do all things through Christ which strengthens me. (KJV bible.com)


You like that, Fibro? I know my God and I know His Word. I'm not where I need to be but by God I thank Him that I am NOT where I used to be! 


Oh look, a spider is on the wall next to me. Not a big one. I'll let him ride. Then again...


I get distracted easily. He'll freeze to death when the heat goes off anyway. 


Back to you, Fibro foe. 


I'm finding ways to work around you. I may not be able to work in an office, on the phones or anything remotely of that nature. Look, see, now my vision is blurring again. Great. Blink. Blink. Blink. 


Ok, I'm back. 


This stuff is real people. Today, I almost fell into the stove. I was walking over to it, loss my balance (I ALWAYS fall to the right, never the left) and had to put my hand out to keep from kissing the stove with my big ol' soup coolers. Thank God I hadn't turned it on yet. 


I think that's why my mom makes my meals and we make sure I can microwave food. Otherwise, well, with Fibro, you just never know. I forget things. Lose my balance. Blurry vision. Oh yeah, it's true. It's true. 


I'm very sleepy now. I need to go lie on this massage bed to relax my muscles. It's a hard road created by Fibro, but you already know what I'm going to say: Fight Fibro with Faith. Okay, I've never used that phrase before but I really like it. 


To all my fellow Fibro-ites out there, know you are not alone. We fight Fibro together. This is our "thorn" to bear, and God's grace is sufficient to carry us through it each and everyday we our blessed to see. 


Leave me a comment. Email me privately at 7ashara7@gmail.com. Donate via Pay Pay to help me keep this blog going. I don't have any income right now. Every disability claim I've filed is in limbo. God provides and I thank you in advance for your love and support. 


Signed, 


The Fibro Warrior Princess 
Ashara

Dear Fibro,


My mom says I shouldn't start my letters to you with "dear" because it denotes "love" or "affection."


Bulls**t.


You know I'm like Snoop Dogg, and since you act like one you should know "I don't love you, hoe."


I digress.


You are pissing me off this week. For 4 days I couldn't sleep. Stupid insomnia. On top of that I've got a pending sinus infection that I've been fighting. Taking Advil Cold & Sinus and using a Neti Pot thingy to rinse my nose out. I always feel like I'm drowning so you know I hate it.


On top of all that, my employers STD (that's Short Term Disability for you simpletons) administrators are pushing me to the brink of screaming. Since your ass, Fibro, cannot be proven with "objective" findings they want every single symptom listed that I'm going through.


My doctor is doing everything he can sending them info and they claim its "not enough to qualify you as disabled." I'm frustrated and want to cuss the WORLD out!!! But, that's my flesh talking. My spirit, God, is telling me to chill. Fall back. He got this.


HUGE SIGH.


Fibro, you won't catch me slippin' this time. No way. I even walked TWICE today. Both walks were 5 minutes each. See some of the readers may think that's pitiful, but that's why I write about you, Fibro, because "they" don't understand.


I'm not spending anymore time on you today. I had to get this stress out onto paper. My pressure is up, and my morale is down, but guess what...


"Though He slay me, YET will I TRUST in Him..." - Job 13:15


I may be down in my heart, but I know God is in control of all of this.


You lose again Fibro.


Signed,
The Fibro Warrior Princess
Ashara

Hey Fibro, 


Spent another glorious day in the crib. Actually, that's not completely true. I actually walked 1/4 of a block to the mailbox and back. Of course, by then (all of 5 minutes) my entire right pelvis was on fire and my right ankle was barking at me. You like doing that to me, don't you?


Fun times. 


Oh! I did walk 20 paces to the dumpster as well! Joy! And other than constantly stretching my aching muscles and making sure I fed myself despite a lack of an appetite (per usual) I had a pretty full day no thanks to your shenanigans. 


At least it was pretty much sunny today. The fall air feels good to breathe in. Could be worse. We could've gotten that malicious Snowstorm that attacked the Northeast today. 15 inches of snow and 2.2 million folk without power. Jesus be a power line for them. 


I'm off topic. It's late. And even though I'm exhausted (again, per usual) in spite of my nearly 2 hour late afternoon nap (after that harrowing trek to get 2 pieces of junk mail) I know I'm going to be up til O Dark Thirty. No thanks to you for the nightly dose of insomnia, Fibro.


Signed, 
The Fibro Warrior Princess 
Ashara

Welcome to The Fibro Files

Hey Fibro, 


You asked for it. You have invaded my life and shaken my world to the core. 


Well, now, I am about to put you on blast. Everyday I will be documenting my fight with you. I will never give up, nor, will I ever give into you. I may be down, but I am nowhere near out. I'm about to raise awareness and demand respect and empathy from medical, disability, family, friends and every other association, government office and person out here who has no clue of what the day in the life of a Fibromyalgia Fighter is like. 


It's on and poppin' my Fibro Foe. Get ready to rumble. 


Signed, 
The Fibro Warrior Princess
Ashara