The Wonderful World of Fibromyalgia

Living with the Pain of Fibro

2012-02-06T09:42:00.000-07:00

I've been sick all my life. From seizures to the common cold, it seems I was always sick as a kid. Looking back, I recall thinking how the heck I was the only kid who ever had a serious sprain from just jumping to sink a basketball. There hasn't been a moment that I can recall really feeling like I was ok....seems that I have always been waiting for one more damn health issue.

I'm 40 years old, in pain all the time, unable to be a real mom or wife...I can't just bake cookies, I can't just clean the house top to bottom. I want to, but I can't. I know you're thinking "what woman in her right mind would want to clean house?" but I do. I LOVE a clean house. I LOVE fresh laundry and the way it makes things smell. But here I sit on my ass. I want to go clean the fake snow from the front door and windows. I want to go mop my kitchen. I want to know that I can get through that. I can't.

Fibromyalgia is a real bitch. It's something that just takes over some of us. There are many people who have fibro flares; there are segments of time they are in pain, a day or a week maybe. There are those people out there with this fibro-flares and then there are people like me.

In case you didn't know, fibromyalgia can strike anyone at anytime. It comes like a thief in the night. It strikes at random places in the body, so there is no way to plan ahead to know what I can do every day. There's no way to know if I'll have muscle spasms or neuropathy...and they happen all the time! I cannot go for a walk..I have to have a wheelchair. I cannot hardly breathe today because I have a HUGE knot next to my lower right lung, and it's killing me.

I want people to know that this nightmare is REAL. Believe it or not, there are doctors who don't believe it is real. This is real, folks. This is real. I have been taken over by pain, by sorrow. I can't seem to dig my way to just air, never mind getting out completely. It's difficult to get out of that hole.

As I sit here now, I'm hurting so badly. I took meds that barely do anything. I need to eat something, but the part where I get up and go to the kitchen isn't working. Nothing has ever frustrated me as much as fibro. I'm sick of this shit. I want a cure! I want my friends to have a cure! Someone has to find something. We need help!

If you have fibro, reach out to someone. It helps to talk about it. Write a blog. Do what you can for as long as you can. Educate your family, friends, and doctors, if needed.

Most importantly, if you have fibro, remember you are not alone.

When we honestly ask ourselves which person in our lives means the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand.
~Henri Nouwen~

All about Assholes

2012-01-21T06:47:00.003-07:00

Disclaimer: This post is meant to be funny, not judgmental, so please read it with the humorous take on life that it is. Those of you who know me well will really get it. I hope those of you who don't know me will give me a chance.

Yesterday, Honey and I ran some errands. Basically I was along for the ride, and spent a few short errands in the car while Honey went in. Honey forgot to put my chair in the van, and though he offered to turn around, I said no. I thought we'd decided to stop by the house before going to Walmart to pick up my chair. On the way back, he asked if I minded using a buggy and not heading home first. Of course I didn't mind. I'm used to them, although I do prefer my push chair, and usually put things in a hand basket on my lap. It's quicker than those awful electric ones in the store. So, off we went. I got a buggy and went through the store and, as always, not really paying attention to things and certainly not noticing how people were looking at us. Kindness I notice, assholes I try not to notice at all.

That's when it happened. While I was toodling along in the miserably uncomfortable electric buggy, apparently a man in the store gave me a look. I didn't even see it but Honey did, and he was livid. I immediately felt the tension. When he's in a bad mood, it's palpable. So I let him stew for a minute, and then had to demand he tell me. Here's what he said: "That rich old man back there... it's nothing. He just gave you a look that I did not like. I just want to beat his ass (which he didn't do!)." Of course I had to demand to know what the look was, and then he said "He looked at you on the scooter, and then shook his head in that way. Who is he? People are just assholes sometimes." I completely agree. People are just assholes sometimes.

I've spent my entire life being looked at and judged unworthy just because I was one thing or another, or worse yet, nothing special at all. That look is one of judgement and assumptions about who I am. Who the hell does this? More folks than you'd think.

Why people are assholes to me, and the stupid shit they say and do.

By Fibromama

1. I'm fat, which they associate with lazy. I admit to being fat (fabulous and thick, y'all!) but that's not lazy, that's exhausted from putting up with assholes. Oh yeah, and all that living with multiple chronic illnesses! Oh yeah, they never asked why I used the buggy.

2. They act like I came in riding a purple pony. It's just a buggy y'all. It's squeaky and gives me whiplash when I try to make the thing go or stop and I can sometimes lose control, but that back up button is so that I can announce my intent to back up over an asshole.

3. It's not acceptable to reach over or around me for an item in the store. Like their mamas never taught them to say "excuse me" and have some manners. It actually is that kinder way among the non-asshole population. Thank God that Eastern TN has a lot of folks are really sweet, and I've even told a few of them...I dish out praise to them and anyone else who'll listen. I will just as easily put someone in the asshole pile.

4. Yes, I may stop for a milkshake now and then, but if you're an asshole to me when we pull up, I will read your beads. I am a fat woman in line for a milkshake! I make sure you have your job every day. How's that for job security? You should be inviting folks! Now get me a shake, asshole.

5. Last but not least: Do not assume you know jack shit about me or my family just because I'm in a chair or riding the miserable scooter in the store. Ladies, please do not give my husband the once-over in front of me like I don't see. Lucky for me, he's as faithful as the Lord. Don't give me a look when I put a Slim Jim in the buggy. And please, for the love of all things holy, please consider acting in a way that is kind and loving, even to a stranger. I don't always have a smile on, and sometimes I look like hell, but I'm doing all I can to remain happy. My life would likely plow you down. Think about more than someone's appearance. Offer to reach the high stuff in the store. Be gentle, especially when you don't know the whole story. You never know when I might hear you and have to educate you in Walmart.

Above all things, don't be an asshole!

“Before you diagnose yourself with depression or low self esteem, first make sure that you are not, in fact, just surrounding yourself with assholes.”
― William Gibson

Empty Nesting, etc.

2012-01-16T21:40:00.002-07:00

My baby boy has been gone a while now, and I only cried for a day in spite of the malleable sorrow that still slips in now and then. Most of the time, I'm finding myself feeling happy, content. That's a rare feeling with being bipolar: there's just up and down, both directions causing anything but happy contentment. I've been trying really hard to have that here. Tennessee is absolutely beautiful, even in this cold snap. No leaves on the trees, no flowers blooming, and it's still breathtaking. Just the birds singing every morning while the wind chimes just tinkle in the breeze...it is hard to not like this place. Today, the final pictures were hung, the drapes finally went up, and things are all in their space. I'm settling in, and that's a good thing!

With all that life has brought us this past year, I never expected to begin a new year with anything good. It's not perfect, but it's good for now, which I also never expected. Having become more dependent on doctors, I have found one that I love. Having become more reliant on my old push-around wheelchair that has been riding rough, I never expected to start a new year with the blessing of an electric wheelchair that was completely free, and it is practically brand new! God makes plans that we're just not meant to know too far in advance. I always think what a great sense of humor God has, and patience. I can see the big blasts of the blessings that, at the time, often hit like real bullets. Not bullets of lead, but bullets of grace and mercy. Sounds weird, I know...I've lost a lot of my ability to make it look graceful. Rhi and I have "love lasers" that we pretend to shoot...so yeah, there's another way of seeing it!

It seems that our oldest son has taken back the better chunk of his life, and he's at least making a real effort to do what he must to fulfill the time he's serving. The youngest boy, well he's doing so well at CU that when I'm getting my daily phone call from him, which makes my day every day. He's always talking about new people, new experiences, etc...He's just one of those kids that can make any friend he wants. I've praised him enough, I know! It's great to hear his voice every day, and it's really calmed my nerves and worry about his being away from me. We do talk every day, and he's calling me if I don't call him.

Now if I can get my youngest girl in her place, I see good things in her future. She's making friends, but still doing squat at school. I'm afraid she got her daddy's way of learning- show me how this works, let me use my hands, notes don't get done, and hate tests. She's exactly like him! I pray that the child will graduate on time and she's still got 3 more years! I love her though, and she's really blossoming into a young lady...which I constantly remind her of! It's bittersweet teaching her new things around the house, like cooking and cleaning, and feeling worried that she might decide that it's too hard to help me out. I don't want to end up a burden to my kids. No one does though, right?

Overall, this move is having more and more positives happening than negatives. I kept thinking I would never feel that way. I'm learning, however, that we have to take happiness where we find it, or life will never be good enough. There's nothing we can do to stop the ride we're on, but we can damn sure ride those roller coasters of life and have some fun! We have to look at the blessings we have, even if all you can muster is feeling blessed that you woke up in the morning. I have those days, but opening up the house and getting some fresh air, some sunshine, even to smell the sometimes torrential rain, it helps so much. And I'm just learning what all this means at 40! I got started late, I suppose.

I'm learning that my children can take care of themselves. I'm learning that just because they'll always be in my heart doesn't mean they'll always be under my wing. That's hard for a Mama Bear, as I was called today! I've learned that my children will always have "baby" status to me, but they're (mostly)adults. Now I'm learning to have a life of my own! I never really have figured that out. Now that I'm so extremely alone, I'm working on not being lonely. I don't even know myself I think...not the part of me that should have been a teenager, that should have been finding a life for myself earlier! I want to figure out what I like to do, but I have to figure out my fun things that are wheelchair-accessible now. It changes things, my being sick. But it doesn't change the empty nest feelings I'm having. And being sick, well, it just cannot be a reason to live less fully. If nothing else, it's a reason to not feel sick. I need something that can make me not focus all my attention to the pain, the symptoms that stay undiagnosed, the embarrassment of needing so much help. I may have to get to know myself as a sick person, but I am not going to make that the attention-getter. It's my turn to try and reel back my life and do the things on my bucket list.

I'm off to write my Bucket List!

"I want to be all used up when I die."
-George Bernard Shaw

Good News for a Change!

2012-01-13T19:39:00.003-07:00

My MRI results are finally in...no progression since the last one. Everything was just the same. Time to go to see a neurologist, but at least my brain's ok!

That's all for today. I'm exhausted. I just wanted to share my good news!!!!

The secret of learning to be sick is this: Illness doesn't make you less of what you were. You are still you.
--Tony Snow--

On being a sick mother of a teenage girl

2012-01-10T20:20:00.004-07:00

Being a mom who is ill isn't easy. I often feel as if the true test of my life is dealing with a teenage daughter. She's a good 6 inches taller than me, and of course, in my wheelchair, I'm at elbow-ish height. This is an issue with my teenager. The lower I get, the "cuter" she thinks I am, unless I'm trying to get her to behave. Then, well, I'm just a bitchy mom.

I have been told that all 14 year old girls are self-centered, emotional wrecks. I've even been told that mothers get the crap from the girls the most. Yes, those are all true. But I'm tired. I'm willing to send her off to boot camp or a strict family to show her how good she's got it. According to her, everything I do is wrong or to her detriment. I'm only cool when I let her have whatever she wants, but when I have to get onto her for the piles of clothes in her room or that she needs to do some chore, I'm the bad guy. That's when she starts the tears and pulling everything out of her bag of tricks.

Today, her bag revealed the "I only have one friend" and "I've been crying since we moved here!" and the waterworks were on. Both of her statements are malarkey. She has made lots of friends here...in fact, she went to hang out with them for an hour today, promising she'd vacuum when she got home. She had a sleepover here just this past weekend! And she's said many times that she likes it here in TN. Just those big guns of hers at work again. She didn't vacuum, and then didn't do the dishes. To top it off, she's told me all her laundry was done, and yet the laundry basket in her room is overflowing. And I take that guilt and turn it on myself. Well, I used to.

Here's my thinking...at her age I did the laundry of 3 households, including my own AND I cleaned those houses. I walked to school, I worked for the money I needed, and I kept my mouth shut when I was told to do something. I don't know how any mother ever has hair left with a teenage girl around. And I know that using "when I was your age" is not useful, but damn...

So now I have a teenager mad at me, oh well. And when her brother was here for Christmas, she did everything and then some around the house. Now, she just expects to get everything she wants and doesn't want to do anything for it.

I feel guilty sometimes because I can't do a lot around here, but I try, and I do what I can. Tonight though, I hit a breaking point. She pulled too many tricks and I put an end to that. Tomorrow, her computer is mine. She'll come home to a cleaning list, which will include doing all her laundry and vacuuming the damn floor. I'm over it. I cannot be this sick and not have help from a child who gets just about everything she wants. I am done with her guilt trips, her waterworks and her attitude. It's time for her to grow up a little bit. I told her to pull up her big girl panties and quit the nonsense. I hope it works. If not, I'll be listing her on Craigslist! LOL

And thou shalt in thy daughter see,
This picture, once, resembled thee.
~Ambrose Philips

Keeping the Faith...

2012-01-08T19:37:00.004-07:00

There's hardly a thing more stressful than waiting on test results. My MRI was Friday, and it went well. But looking at the pics of my head freaks me out. I don't really know whether it's good or bad, but I know that it could be really bad, and I don't like that. For all the tests Honey and I have had, you'd think it was old hat for us to wait patiently, but when it's the brain, that's stressful. It's the reason my body does what it does, and lately it hasn't done much correctly.

Most people have family and close friends that help them through the illnesses we face, but all I really have is Honey and my youngest. Whatever I have to deal with, I have a pretty small circle who can offer support and assistance. I feel like a burden much of the time, despite Honey's insistence that I am most certainly not a burden. I know it's hard on him...I need a lot of help.

I hate to wait. I am not patient. I am afraid and weak. I am praying. I don't know what else to do. Pray for me too, please.

Very truly, I tell you, you will weep and mourn, but the world will rejoice; you will have pain, but your pain will turn into joy.
John 16:20

Waiting...

2012-01-05T20:27:00.002-07:00

Have you ever had one of those days? The type of day you want to throw stuff? Today has been one of those days. My son is going back home in a few hours, and all the passing time has gone in a flash. He'll be back in May for the summer, but man, I miss this kid when he's gone.

On top of the missing him, I'm in so much pain I want to give up. There are parts of my body that are both dead feeling and like fire ants are all over them. I lose it when I hurt this bad. It makes me angry that I have to deal with this. I feel like if I could just walk out of this body and into a working one, it'd be a done deal. Every inch hurts inside and out, and it pisses me off!

My dr. has ordered tests, the first of which was an MRI done yesterday. Next will be another lumbar puncture. What we're searching for is still unknown, but it's like the needle in a haystack. Something's wrong, we just need to know what. For about 10 years now, I've been bounced around from one doctor to another and from one medication to another. Nothing yet has helped. I'm "untreatable" according to every doctor I've met. I know I'm a wreck and so do they. I hope to have answers soon, and I'm really praying that the answers aren't worse than what I would expect. I hate waiting for test results!

So yeah, today isn't my fave of days. My kid's leaving, my pain is through the roof, and I'm not in control of anything! I really should get a nap though. I'm likely to sleep all day tomorrow after we get home!

A new year coming, and THANK GOD!

2011-12-26T12:41:00.003-07:00

Well, here we are at the end of another year. Ok, we still have a few days, but I'm looking forward to a new year. Seems that 2011 was trouble from the start. I know I'm not the only one that's happy to bid 2011 adieu!

I don't make resolutions any more. Most of the time, they just fall by the wayside, those pesky resolutions! The only one I think I've kept was New Year's 2000, when I determined to stop smoking. On my birthday that year, I stopped. It took me some time, but I did it.

Once I got sick, I quickly realized that all the best intentions I had to keep a resolution was gone. Fibro took my life from me, and trying to make plans at all is tough for me, never mind trying to plan for a full year! I never know what will happen tomorrow, and no way to follow up on plans if I can't even get off the couch!

Most of the people I know had a crappy 2011. From kids and moms with cancer battles to the crashed economy, it's been a hard year to get through. Everyone it seems has had major issues, and the economic climate is not good. We're all feeling the pinch, and I don't know anyone who's really had a good year financially. I have friends who have spent this last year looking for answers about their health, who have lost families because of their illness, and have had trouble with job-finding, bill-paying and more.

For me, 2011 was especially hard. A major move across the country for a dream turned into a nightmare. I've gotten so much sicker this year...and they say fibro isn't progressive. The hell it ain't! Having all these new symptoms are frightening, but I finally feel like I have a good dr. Maybe it was God's plan to move here so that I could get the medical care I was lacking in Colorado. I don't know...God's always got the reins, and it's not for us to always know what direction to go.

For 2012, there will be a lot of "the world is ending" stuff going on. I think many people both look forward to, and fear, the next year. It will all be what it is, and we have to accept that we don't always have control. I just pray for every day to have some beauty. I am praying that we all have a wonderful, easy, happy 2012!!!

Drop the last year into the silent limbo of the past. Let it go, for it was imperfect, and thank God that it can go.
- Brooks Atkinson

Having Courage

2011-12-17T21:08:00.002-07:00

My recent visit to my doctor was pretty much what I expected- tests, more tests, and yes, let us suck your veins dry for this one other test. I feel like it's finals week and I haven't even started reading!

I love my doctor. She's almost a decade younger than me, and she's got a wonderfully dry sense of humor. It's rare to find a doctor who can make you laugh, and for her I think she was glad that I was laughing because that meant I wasn't the typical puddle-duck. She's able to admit that she has nothing that she can do to help me. She said that she couldn't imagine me finishing my degree or working at all. While her "pain in the ass" patient was outside the room pitching some sort of fit, we discussed the fact that there are no new options unless there are new findings in that group of tests. I'm sick as hell, and no one can seem to figure out why, so we're starting over sort of.

Honey will spend his birthday with me in the hospital. I have to have an MRI of the brain, which may show something new or not. It's been several years since I had one of these. Later in the month of Jan. or Feb. I'll be having my second lumbar puncture. These are nightmarish, and my risk of having a leak is raised by the fact that the last time I ended up with a spinal headache. This time, I'll be on my back for 3-5 days, and my mother-in-law will be coming to tend to me.

Somewhere in all the pictures and punctures and all the bloodsucking, I pray to God there's an answer. It's not that I want to know something horrible, but if I don't, I don't know what I'm fighting. Know your opponent, right? For most of my life, there have been no answers for me about my health issues. The last MRI/puncture tests ended up inconclusive. My brain looks like a cokehead's brain, but they don't know why. My body suffers, and they don't really know why. It's all just a bunch of easy diagnoses. I don't want easy, I want conclusive. I want to know what this is. I need to know what this is. I'm losing the battle of fighting in the dark with my hands behind my back. I want answers, so I'm going to have all these damnable tests and their misery.

Tonight, I'm out of control emotionally. I'm manic, but physically in too much pain to even cry. I'm afraid. I'm petrified. I don't want to lose the fight. I have to know who is going to be throwing the punches. I have to know what this is and how everyone else is fighting it. I have to know, in my heart, that I cannot be broken even when I've got some cracks and dents. I'm working on getting all that in place, trying to figure out my path. I have lots of people who love me, and lots of people I love, and we'll be praying for the best outcome. With that much love, how can it be bad?

"Being deeply loved by someone gives you strength, while loving someone deeply gives you courage."
~~Lao Tzu~~

Closing the very last door

2011-12-09T18:06:00.004-07:00

Most of my life has been lived on my own. I don't have a lot of friends that have lived close to me since I was around 18. My family was ripped apart when my father died, and I was launched into a hell no one wants to relive. I realized young that my family was different. I was given titles for people that worked perfectly for me, but not at all for them. My uncle was my brother, and my aunt and birth mother were my sisters. My grandparents were the best parents in the world, and I'm so blessed that they took me in and gave me an amazing childhood.

When my mom died, my dad started taking me on little jaunts. We'd head to Florida to spend the summer with his sister and her family. It was the one place I felt at home; it was the one place I felt like I had family. I loved my sister, and we lived close to her most of the time that I recall. Once my mom died, I think my dad hoped that my sister would take the womanly role in teaching me what I needed to know as a girl. She didn't.

When daddy and I moved to CO, it was into a home that I wouldn't wish on my worst enemy...funny thought considering that it was meant to give my birth mother a chance to be a mother to me. At one point, the complete and total failure of her to be anything close to a parent was painful. Today it's just part of my life. I tried for years to get her to be anything less than hateful and ugly toward me. Not such a success there.

I got back in touch with my sister a while back. Facebook I think was what did it. Everyone can find you on Facebook. I started to believe that we were going to patch up years of having no contact. I actually got to a point when I thought she was listening to me, treating me like an adult finally, but more importantly, a sister. My error was thinking that she wasn't also being a perfectly wonderful sister to the woman who birthed me. That's the trouble with my family. The links that are there outside of me. I'm a mistake that needs to just stay in my little corner and not speak up. That's how it's always been. How could I have fallen for it?

You all know my health is bad. I don't hide it. At this point I am just trying to do all I can to find answers to the problems that plague me. I had asked my sister if she knew of my birth mother's illnesses. I even emailed the witch herself...it makes me puke to call her a mother. I got some angry retorts on Facebook, and then the fun began. I realized that one message from the witch was about something I said to my sister. Lord, they just fall together into a mess and try to drag me in to drown. I need help, and this is God's way of telling me to get the hell out of my own family once and for all. I have strangers on the street who'd do more for me than my family ever has. It took one statement to light a fire under the witch's broom, and I won't keep turning to people who back-stab and blab. It was a mistake in the first place to even believe that my sister could be my sister. I'm still the mistake the witch made. Sad when, after 40 years, my family still hasn't learned to be family.

I am blessed with friends who are like what real family should be, with kids I love, a husband who thinks I'm perfect in every way. I have support, I have fun, and I know who I am. Those are all good things, and my family can go on back to their nonsense without me. Time to be me and say screw 'em.

I looked for a good quote for this post, but all the ones about family said things that my family hasn't been in years- a place to rest, people to help raise you up, people who are always there for you. My family has never felt like that. I've always felt the torment stirring, and as much as I have wanted and tried to calm the raging storm, it's hopeless. Now, I'm too damn sick to care what anyone has to say or what they do. It's easier to unfriend people on Facebook than to put up with conniving and bullshit. That last sentence will suffice as a quote this time. And yes, you can quote me.

A flawed mother

2011-12-05T19:25:00.003-07:00

I found a quote tonight. Sitting here at the computer frustrated with my worsening pain and with speech and motor problems more severe than ever, it touched me.

"Yes, mother, I can see you are flawed. You have not hidden it. That is your greatest gift to me."

--Alice Walker--

This was on a page of quotes about mothers and sons. If you've read anything lately here, you'll notice that I try to add a meaningful quote to each post. Quotes are a little key unlocking doors in me. I think about song lyrics the same way; someone meant to say something powerful and meaningful in the art of just words. Words that we say can have nothing useful in them, and others may mean everything. For me, the above quote brought me to tears.

I was thinking about my youngest son, in college in another state, surrounded by friends and eager to fly in a plane for the first time in just a couple weeks. I'll have him for just a bit, and I'll be honest, I really hope he wants to stay here! I can dream. :)

Will and I are extremely close. When he was small, I was the one who dealt with the uncommon issues of his brain injury that occurred when he was at about 22 weeks gestation. Now, at 19, there's not a thing wrong with him, but as a baby and toddler, I didn't know what to do but love him. I learned how to help him along, and we learned together. We ate Billy Berry ice cream at Baskin Robbins after therapy, we snuggled together to rest from long days at therapy appointments and doctors visits, and we tried to have a normally abnormal life.

Now, it's me who is not well, and it's my body and brain that are broken. My body has been made weak, but my heart is not. The center of my life still beats just fine. Without my kiddo though, and all of them to be honest, it's really tough figuring out how to be me. I feel like so many things are a mess in my life, but the one thing I know is solid is my relationship with my youngest son. While his brother and sister have been a little much to handle, Will is always solid. He thinks about my needs, always ready to help me, always making sure that I'm ok, and I truly believe he's wanting me to know he's got my back. I can trust him, every word. And I know if I needed him, he'd be here on a camel's back if it was the only way. I admire him, I respect him so much, because he's not dishonest or judgmental, and that is more than most friends and family will do for people they love . He talks to me every day, and he calls me at least half of the time!

Part of our relationship involves a no-holds-barred way of communicating. I tell him what's up with me. Seems like I have a new symptom every week, but he wants to know. He knows I'm a wreck physically, and he knows when I need him to talk to. He's a dear friend, and I appreciate his input and his words of comfort more than I do most other people. He knows my heart, because I've let him in. He knows I am flawed, and through it all, he's ok. He doesn't really think anything weird about my illness, he just cares that I'm doing ok. He goes out of his way to be there, emotionally and physically. I know it seems like a lot for a college freshman, but he's an old soul, and he knows my soul in a way that really says something for kids choosing their parents. I'm so blessed he chose me. I don't have to hide anything about myself, never regretted a moment of all the trials we went through to see him to a "normal" life. And I think that he's learned that no one is perfect, and I hope that this stage of his life brings him amazing people to share their flaws with him. Flaws are much more personal than most are ok divulging. I hope he can learn that sharing our flaws only brings people closer together. It has been in all the flaws we've both had that he and I grew as close as we are. I don't love him any more than my other kids. We just all have very different relationships. Will has become who he is because I never lied to him, because I never felt the need to hide my pain from him. I haven't tried to hide my illnesses because it's honestly too much work, but where others have not shown compassion or a desire to really understand it all, he shows it in spades. He's the kind of person you could hug forever. His hugs are magical, let me tell you!

If you have fibro, or any other chronic or terminal illness, turn to a child of yours or a friend or family member and begin with letting them know your flaws. You'll be amazed at how the truth makes them come out of themselves and allows them to start to see the other people in the world as flawed, but beautiful.

Do not hide your flaws, celebrate them.

A wise man once said...

2011-11-28T20:47:00.004-07:00

Today I had a good cry. I had decided to call around to see if I could find a place with a therapy pool or hot tub. Only one came up and it was too expensive. But the real problem was my speech. It's really getting bad, and it's downright awful on the phone. The first thing I say is that I have speech issues and I ask them to be patient with me. They always are. Today though, I heard pity in 3 different ways from 3 different phone calls. There's nothing wrong with saying "hon" or "bless your heart" in the South. I tend to do it myself, but when pity's in there, it just gets to me. Today it was too much. I vented to friends and to my Honey, and Honey was very comforting.

Ultimately, he asked me where the woman was that he met all those years ago. When he met me, I was 6 months into being a single mom. I was hell bent on being myself after being the miserable, yet doting, wife of a man who wanted Martha Stewart for a wife. It became exhausting to be the actress all the time. When I asked for a divorce, I felt like I was getting a second chance at life. I got pierced and tattooed. I went to bars and had some fun. I didn't get a teenage life as a teenager, because I was working full time from age 14, and if I wanted to go anywhere, I had to follow some horrible list of dos and don'ts that took any joy that might have come to me. Being still in my 20s, I wanted to have fun, and I did.

When I met Honey, he was this shy, reserved guy, who always got embarrassed when I called someone out for their bullshit. I didn't have any problem telling anyone anything, good, bad or indifferent. I think Honey's embarrassment got me used to being quiet. But I'm tired of being that way. I don't mind holding my tongue now and then. It's just basic courtesy to be kind. But when I see women checking Honey out and doing that head shaking back and forth and whisper to their friends or spouses or kids when they see me in my wheelchair, I tend to take it personally, despite my desire to not take it personally. That's new for me...I'm not the type to take anything as offensive. I'm a big girl and I take up some room, but people here seem to feel that if you're heavy, you're lazy. When they see the spasms I have or hear my broken speech, I've no clue why they rush their kids off or force a husband to turn away and not stare. I fully admit that I've judged people in the past. I think we all do it at some point in life. But I can't be ok with judgments about me. Definitely a cause for a pause.

I don't like judgement. I also don't like assumptions being made about me by someone who's never seen or met me before. Most of the time, it's all invisible and it's not easily understood from those on the outside. They look at me and I can see the wonder in their faces. Why is this fat woman being pushed in a chair? She's fat so she's lazy. She's fat because she bought a soda. Suddenly I'm eating too much and drinking pop and making this poor man pay the price.

My husband has never been embarrassed about my problems, even when I want to burst into tears. When he asked me where that woman was, I realized that I don't say what I want to a lot of folks. I don't speak up, and I usually let him do it for me in case my speech becomes an issue. I don't want to do that any more. I want to be proud of myself. I want to lose the bullshit of caring what others think. God is my only judge, and I'm going to share that message more often with people.

We can never judge the lives of others, because each person knows only their own pain and renunciation. It's one thing to feel you are on the right path, but it's one thing to feel that you are on the right path, but it's another to think yours is the only path.

--Paulo Coelho--

The Beauty that Remains

2011-11-21T12:30:00.003-07:00

Sometimes fibro makes me feel like it has me instead of me having it. OK, I admit it, most of the time it feels that way. So much of my life has been taken over by this syndrome. I call it that because it's not just one illness or issue. It's a whole slew of nasty things. Today I couldn't even get out of bed. Luckily, I woke up while Honey was still around. Kenzie saved me- I just tell her to "woof" when I'm in trouble, and that alerts Honey that something's wrong. He got me out of bed and into the bathroom. After that, it was straight to the couch. Even sitting here at the computer is awful, but it's my only real outlet, so here I sit.

Fibromyalgia is a bitch. It's evil and mean. It takes away (at least for me) the happiest parts of life. Today I feel like I have an iron bar shoved up my spine. My sciatica is awful. My speech is impaired. I've even had trouble swallowing lately. It's a terrible affliction.

People with fibro need support; they need love and respect and help. I often feel like a burden and usually feel like a curse has been put on me. No one should have to suffer the way I do. I know there are people much worse than I am, but no one deserves this. Suffering is not honorable, but it does often make people better for going through hell. Suffering is a huge part of my existence. It's exhausting, and it makes me feel like I'm less of a woman, less of a person. It takes away so many things in what used to be my life.

I'm blessed to have a service dog, even if she does like her clucking chicken a bit more than me. :) Seriously though, she helps me a lot. And I have a husband who wants to help me. Hell, he's convinced it is a privilege. I have kids who care about how I'm doing, and they help me so much. It helps to know my family cares about me. That's not the case for so many people. Spouses leave, children leave, and no one is left to help someone who's in the same boat as me.

If you have someone in your life with fibro, do something to help them out, even a sincere hug helps. Make a casserole for a friend, offer to walk their dog, clean the house for them, let them know you care. Life with fibro is indescribable to most people. The pain of fibro isn't something that can be understood unless you live with it. It's a syndrome that feels like a prison. There's no real escape from it. Meds may help sometimes, and people can have bouts of remission. But then there are folks like me, who can't take the meds, who don't get periods of remission. I don't care what the doctors say, fibromyalgia is progressive in many people, including me.

If you are someone with fibro, keep going. You can have beautiful things around you, and you have a life, even if you sometimes wish it wasn't so painfully bad. There are lots of people on the internet that are willing to listen and willing to befriend you, even if you can't do much more than get on the computer. There are doctors who will listen, so fire the ones that don't. There are people who want to help, you just have to withstand the 100 "no" responses to get that one "yes." If you only have bouts with fibro and those blissful remissions, consider yourself blessed. There are many, many of us who seem to have horrible days and weeks with added flares that would kill a lesser mortal.

I'm not broken, but I feel like I am. In reality, I'm strong as hell most of the time. I suck it up and do all I can to hide the expression on my face that says I'm miserable. I try to not let others see my pain until it gets so bad that I cannot fake it. I was once an independent woman, confident and able. Now I'm dependent, embarrassed by my need for a wheelchair and my messed up speech, and certainly not able to live the life I want. It's a hard lesson to learn, being dependent on someone, especially when, like Honey, they work a full day and come home to take care of me. Appreciation isn't quite enough of a word, but I do appreciate everything, every bit of help, every sweet word posted by friends and FMily on Facebook.

Stay strong, fibrofriends, stay strong. One day at a time is all we have, and even if it's spent on the couch with the heating pad. That's where I'm headed now, but of course, I have to add a quote, which my daughter actually pointed out to me. I think it's a beautiful reminder to look upon life thinking about the good and living with the bad. We have to find the beauty in suffering, and it is possible despite the bitter sweetness.

I don't think of all the misery but of the beauty that still remains. ~Anne Frank

Happy birthday to my baby boy

2011-11-12T20:00:00.003-07:00

Nineteen years ago today, I was blessed with my second son. I was convinced he was going to be a girl, and had chosen the name Brandy after that song by Looking Glass, Brandy (You're a Fine Girl). I chose it on the way to my last appointment before I went into labor. It was on the radio, a favorite song of mine, and it was perfect.

When I went into labor, I expected a girl. In the hospital, I still expected a girl. The dr. came in with the ultrasound to make sure all was well as I was having severe back pain. Even when she pointed out little testicles, I wasn't convinced! Then came my sweet son, Will. We named him after both his grandfathers, William Gracey (paternal grandfather) and William Jordan (my sweet daddy). Will was a true miracle.

When I was just 11 weeks along, I started bleeding. I rushed to the ER begging God to not let anything bad happen and begging to not have another baby lost. The dr. checked me out and told me that I had a choice: go home and let nature take its course, or have a D&C that night. There was no way I was giving up on the smallest hope of carrying my son to term, so I went home and went straight to bed. Of course, I couldn't sleep. I prayed for my baby. Once my (ex) husband fell asleep, I just kept praying in the silence. Suddenly, this beautiful gold light came shining through the hallway outside the open bedroom door. It was so bright that it looked as though the sun was shining into the apartment even though it was pitch dark outside and very late. I sat up just a little, and then I saw my father. He was bathed in this light, and he stepped into view in front of the door. He looked at me, said "everything will be all right" and walked on. I even got up out of bed and followed him, but by the time I reached the hallway, he and that golden light were gone. My father had died in 1985, and this was 1992. It was the biggest reason I chose William for my son's name- his grandfather had come from Heaven to tell me it would be ok. It was a very real experience, and I was more than grateful for this one visit from my father.

I went back to bed and slept very peacefully. In the morning, I woke up and called my dr. who'd assumed I'd had a miscarriage. When I told her I was doing well, she asked me to come in right away. Hearing that I was still very pregnant wasn't really a surprise. My daddy had told me it would all be ok. I never questioned my daddy! I was sent home and put on strict bed rest for the next 6 months of my pregnancy. I was literally flat on my back at home for so much time, I thought for sure I'd just blend into the sofa as much as I was laid out on it in front of the tv. I spent a total of weeks in the hospital that was about equal to my time home on the couch and in bed. It was the only thing they said that would help my baby along, and I just kept the faith and did as they suggested.

When he was born, Will was perfect in my eyes, but he had a few seizures in the nursery and was in need of some oxygen. Of course he was beautiful and perfect to me, and just the fact he'd been born right on time was viewed as a miracle even by the doctors. Three days under the blue lights for jaundice, and we went home.

We spent the next few years in speech therapy, along with occupational therapy. At one point, he had an MRI because he wasn't walking or talking, and he was falling a lot. His speech started late. He had seizures. We spent more time in doctors' and therapists' offices than at home it seemed, but I'd have done anything for him. At just about 5 years old, this child was as normal as any other kid his age. The seizures stopped at around the age of 5 too, and he was smart as a whip. He was so good that we never had any real problems with him. He was a blessing...still is.

Today, my sweet Billy is called Will, a name he chose for himself at around 9 or 10 years old. He thought Billy was too childish. He's funny, smart, loving, gentle and he's everything any mother would want and more. He's been not just my son, but my friend, and I respect him and his honesty. There have been times when he questioned leaving the house to go out with friends because he was afraid of leaving me alone. How many teenagers think first of their mother instead of themselves? He's happily helped me when I was sick and he's never acted like helping me was a burden. His generosity is natural; he sincerely wants to help other people. There have been so many times that I have had to reassure him that it was ok to go out and leave me on my own. Even now, he and I speak daily, either on the phone or Skype. Those conversations are my daily medicine; it feels like we're not so far away when we talk.

I'm a blessed mother. I love all my kids. Today, though, is Will's day. So Will, please know that I love you more than I can ever express, and I miss you all the time. I'm grateful for you, and I'm grateful that you've never let anything limit you. You make my life brighter, my days happier, and you are a blessing to everyone who knows you. Your hugs, your smile, your happiness and your love of life are all things that make the world brighter, not just for me, but for everyone who knows you. I'm blessed to be your mama, and honored to be your friend. You're one of the rare ones, kiddo.

Happy birthday!!!! I love you unconditionally, and I miss you like crazy!!

“The child must know that he is a miracle, that since the beginning of the world there hasn't been, and until the end of the world there will not be, another child like him.”

--Pablo Casals--

Dealing with Death

2011-11-11T18:41:00.003-07:00

Sometimes I get the impression that God wants to teach me some amazing lesson and I'm completely blind. I often wonder why things happen, what type of lesson is buried under the hard parts of life that we must all face. It's rare, but sometimes I see that lesson right there in front of me...and I often look back with that "Oh! That's what I was meant to learn!" feeling. God's taking baby steps with me, and I'm sure it's because I'm hard-headed. My Daddy used to tell me I was stubborn as a mule, and my kids all got that little genetic gift.

When I was 14, the same age as my youngest daughter, my Daddy died. I didn't cry around anyone, because I wasn't given any support, and being strong was just part of who I was and still am. This event was devastating, and I wish he was still here to talk to. I know he's listening though, and I know he's looking out for me. I have never really dealt with his death; he was my whole world and then he was gone. I still shed tears for him...I was very much a Daddy's girl. I miss my Mama too, every day. Both of them were amazing people and they were gone too soon. But my Daddy, well, he put the sun in the sky every morning and lifted the moon to rise every night, and he felt the same about me, as I was often told.

Two days ago, my 14 year old baby found out about the death of a friend back in CO. The girl passed in her sleep, and she was also 14. This friend had been very supportive to my daughter during all the drama in junior high, and my girl loved her for this support. To lose such a young child is devastating, and without any answers about what took her, there's no closure for her friends. My heart goes out to this girl's family; I cannot imagine what they are having to endure.

I had to deal with death all alone. When a friend of mine took his life in our junior year of high school, there was no support. I was always lacking anyone to really confide in, someone who was safe to let go and spill my guts. Family never did a thing to help me deal with death, and friends didn't know how to help. Now, in this situation, I don't know what to say to help my sweet child feel better. No one supported me, so I don't really know how to support her. I'm just trying to be there, to hug her or hold her.

So, here's the lesson...I never dealt with the deaths of people I love, and now, all this is bringing up a lot of painful memories for me. God's all about helping clear out the bad and bring understanding. In this recent tragedy, I'm learning to both heal myself and support my daughter. I have spent so many years focusing on my sorrows, but my child needs positive support, so I have to be strong for her. My message to her is to celebrate her friend's life, to live with an attitude of gratitude for every day, and to be an example of her friend, helping people in need. Tears are normal, sorrow is normal, but in talking to her about moving forward, I think I am learning how to heal myself. I am trying to learn how to deal with my loss, and that's something I desperately need to learn. There have been so many people who've gone before, and they deserve to be celebrated.

I told my daughter that when I die, I want a party. Balloons, music, food...I want people to celebrate my life, not mourn my death. I know there's something beyond this life, something so beautiful that we cannot imagine it. I want to know that I can be at peace, and I want my friends and family to know that as well. Rhi practically had the party planned when I told her everyone has to wear purple and/or pink, and no one in black can come to send me on. I don't want my family to spend 25 years after I'm gone shedding tears for me. Talking about this helped her I think, and considering that another friend of hers lost her Daddy just yesterday, I know that she's thinking about what it's like to lose a parent. She needs to understand that death isn't an end; it's a beginning to something so much more than just this life. This is the practice run for Heaven. Every day and everyone should celebrate and not get wrapped up in the emotional pain that comes with death.

It is bittersweet dealing with all this; I'm full of emotions about the losses I've had, and my heart is breaking for my daughter. I pray that she will grow to feel that death isn't bad...it's just part of life. The people we love aren't gone, they're just in another form. When we accept death, we realize that often it's a beautiful experience. I do believe that death is as worthy of celebration as death. We come into the world with a scream, and we will each leave this world in our own way. We need to learn to let go of the people we love, and that's the hardest part. Grief is for survivors, not the dead. We have to allow ourselves a chance to really grieve and come to terms with death because not one living thing is immune.

I've told my children that when I die, to release balloons in the sky to celebrate that I graduated. For me, death is a graduation.
Elisabeth Kubler-Ross

FibroFairies and pain

2011-11-05T19:45:00.003-06:00

I am tired. Not just tired, I'm plum exhausted. My body aches and feels every bit as broken as it is. I am used to it...well, I thought I was. Sometimes, a great day can get tossed because of that pain, especially my back. I'm certain my spine has a vendetta against me!

I'm back to packing, back to trying to fit all my stuff in the few boxes we have and praying that I have the strength to put it all away in just a few days. Granted, it's not as bad as the trip we had coming here, but packing is packing, right? Luckily, my husband has a 14 year old who's going to help load and unload. I get to put it all away! Yay!

I wish fibro had a button that could turn it off, even if just for an hour a day. One hour pain-free and I'd be a busy beaver. I can do a lot in an hour, well, I could do a lot in an hour. Now it's mostly sit on my ass and do what I can. It's not easy. With fibro, we get no real breaks, and if we do, we are wonderful at overdoing it in that special time. I don't get the reprieve that some do. I know that many have fibro and only have trouble once in a while...doesn't that sound beautiful? Like music, right? A break? I haven't had one in years. I want one!

Looking around at things, I still have pictures on the walls. I still have curtains hung, and I still have so much to do! It's hard to wrap my brain around moving in just a couple days! I think it'll be a great start-over. It's not perfect but it sure ain't all bad. People here are so nice, and they respect their elders. I'm hoping that this all goes off without a hitch, but I know for a fact that there'll be hitches. No plan, even this simple, goes without putting a hitch in your giddy-up. That's ok. Pain and work and struggle and strife are all part of life, aren't they? In spite of my pain, I get up and do what I can, when I can. That's all any of us can do!

I hope the FibroFairy hasn't sprinkled me with a super-bad week...I really want a great, pain-free week! For me and everyone else!!

"I am certain that I never did grow in grace one-half so much anywhere as I have upon the bed of pain."

Charles Spurgeon

Weakness and Strength

2011-11-03T12:43:00.002-06:00

This is where I come to talk out my issues, blab on about all sorts of things, and quite frankly, it's the place I feel most at home to talk about my life.

I'm a bipolar bear, and some days it's like I get both poles going at once. My life seems to be bipolar too! When I think about moving again (in just a few days!) I want to scream and thank God all at the same time. We came to TN for a dream. It turned into a nightmare. Now we're moving about 40 minutes from here after realizing that we just cannot afford to live in CO.

The rent here is cheap, and we found a cheaper place in a nicer town. It's not the best part of town, and it's busy a lot, but it's ok. Judging by the crowds at the next-door eatery, it's a great place, so we'll have a night out close by! :)

I wish we could have gone back to CO. I miss my boys terribly, and I want to be closer to them. The cost of living in CO is so high! We'd be paying $1200 a month in CO for what we're renting in TN at half that price. There are benefits to living here. And we'll be in a better school area for Rhi. I am hoping it works out for the best for all of us!

Anyway, I guess I've had a revelation. I realize that my kids can't all be under my wing forever. They'll fly off and start their own nests, and I have to learn to be ok with that! Missing them is a daily thing, but I missed them in CO even when they were at sleepovers! I'm always going to miss them, where ever they are. It's time to take care of myself, time to get something in my life that feels good to me and keeps the bear at rest.

Our kids are meant to have their own lives, live their own dreams, and find happiness. Mothers should have that opportunity too. I'm always Mama first, but being sad and depressed because my kids aren't with me is just too much of a toll. I want to be happy. I want to make out of this disabled life whatever I can. I want to feel like my life is good, because, all things considered, it is. Your quote of the day is below.

Sometimes, in our greatest weakness, we find real strength.

-Me-

Being Thankful

2011-11-01T18:51:00.002-06:00

Ok, it's almost Thanksgiving, y'all...time to be thankful for so many things! This is a longer version of the FB post I made. Of course, I take everything to this blog to work it out.

I cannot imagine a better way to start off my thankfulness than saying I'm thankful for Honey. November marks his 10 year anniversary of being cancer free, at least from his lymphoma and kidney cancer. When he was first diagnosed, I felt like my universe folded in on itself. His cancer diagnoses was the same as my father's had been. Lymphoma takes over the stuff of life, blood. His very blood, the thing that kept him alive, was the part of him that was ill...ok, not the blood, but the filter for the blood. You know what I mean.

I took care of him through 3 cancers ultimately. The latest bout was skin cancer, which seemed weird for someone who never spent time in the sun uncovered. I am thankful that none of his cancers took him from me.

I'm also thankful for him taking care of me. I saw him through temporary illnesses, but he's got me forever. I'll not get better. I'll be sick till the day I die. This man takes care of me better than anyone in the world could. Hell, my family's offered no help at all. When I had surgery, and Honey couldn't get off work for the 2 weeks I needed help, even then my mother-in-law, who admits to not have a maternal, take-care-of-folks bone in her body, came to spend 2 weeks nursing me back to independence. Ok, that was a side note...

Anyway, back to Honey. I've been in pain a long time. He's never assumed I was faking (which so many people do!) and he's always tried to be there for me. When my diagnoses started coming in, he was there at every doctor's appointment. When I had to stop driving, he just took over. He never complained about all the extra errands he was running that I couldn't, and he never fussed about having to be my chauffeur. When it became almost impossible to wash my own hair, he just got in with me and washed my hair. He made sure I had a shower chair so I didn't have to stand when my muscles began cramping and spasms took over. Now those showers are one of my favorite things. It's time that we just spend talking and catching up. He even washes my back and gives me shoulder and head massages.

A few years ago, I lost the ability to walk very far. The muscles start cramping after a very short distance, and I had to get a wheelchair. It doesn't phase him a bit to push me around. He makes it silly and gives me forehead kisses bending over the chair and me. At first I was not happy about it...I'd already had to start walking with a cane, and that made me feel awful. I was in my 30s and using a cane. Now, that cane is my buddy! When we get to a place, he just grabs my chair and off we go! Without him, I'd be homebound, unable to walk much or well. I cannot imagine the misery I'd have without his willingness to just conform to my needs.

I've never had anyone that I could rely on like Honey. He never complains about having to make supper or clean the house. He does laundry, puts away clothes, and so much more. He doesn't expect me to do things, and he takes it all with a smile.

I can imagine that it's not so easy living with me...heck, there are times I don't like myself. He takes it all in stride, and that's something that I know from friends and family is rare. There are a lot of women who are sick like me who have had their husband call it quits. It breaks my heart that there are so many people out there who are like me, but alone. That's only good for making people sad and miserable. No one should have to suffer alone, but so many do.

So, there ya go...I'm thankful for Honey.

More marriages might survive if the partners realized that sometimes the better comes after the worse. ~Doug Larson

Happy Halloween!

2011-10-31T13:35:00.002-06:00

Well, it's that time again! Happy Halloween!

When I was a kid, the only Halloween trick-or-treating I really recall was when I was maybe 8 or 9...I was dressed as a Storm Trooper from Star Wars. I went out once I moved to an area with neighborhoods, but it was more to hang out with friends than anything...well, and all that free candy! When I was older, Halloween was a chance to pretend to be anyone but me. It was the only chance I had to not be me, and I coveted everything Halloween gave me. It was a few hours a year that I wasn't me. I loved being anyone else, because being me meant being treated like a prisoner, being miserable and being depressed. Halloween was the perfect escape for a few hours once a year! And boy, did I love it!

When I became a mom, Halloween was a chance to take the kids out in cute costumes and, of course, steal their candy! When they're small, they don't really notice it missing, and I used the excuse that it had to be gone through. I did take out anything weird and open, but I was always after the chocolate! :D There's something so special about that first Halloween. Heck, it's always special. I loved going out with my kids, and I miss it! Now, I'm responsible for the candy giving, but that's pretty special too!

Now that we're out in the boonies, I'm doubtful that anyone will come by, but I have candy. The baby is too old now for trick-or-treating, although she might just decide that she wants to go out and see what she can score. Her daddy can drive her 5 minutes away to some beautiful neighborhoods, where hopefully she can get lots of chocolate! I still maintain my right to go through (and snag) the good stuff!

Halloween should be fun. I have friends who don't celebrate it, for reasons that I don't really understand, but I don't have to. I know there are a lot of religion-based theories out there about the celebration of the holiday, but I don't agree. The holiday was taken from a Celtic fall celebration called Samhein. I, for one, think it's lots of fun to dress up and get candy. I also love the celebration of the fall, the change of seasons...it resonates with me now as I move into the 'fall' of life. New seasons really have been important to me lately, both the natural turn of the seasons to being in a new season of my life. My goal is to enjoy the seasons more; I want to celebrate the seasons!

I won't be able to go out tonight. My wheelchair is on its last legs, and the cold is too much to bear. I couldn't possibly stay warm enough, and Honey doesn't need me holding things up and wearing him out. I'll stay nice and warm, and I'll just wait for candy! I do hope we get a few kids at least. There's something special about hearing that "trick or treat!"

Tonight, I hope you're all safe and sound. Watch for the kiddos out there, and please don't speed around or drink and drive. Those little bitties deserve a good time, and I pray that everyone has a safe night. Be sure to put the under-layers of long johns or tights or something to keep everyone warm. It's so cold around so many parts of the country, and it's no fun freezing your fanny!

Happy Halloween!!!!!!!!!!

Pixie, kobold, elf, and sprite,
All are on their rounds tonight;
In the wan moon's silver ray,
Thrives their helter-skelter play.
~Joel Benton

40 and Fabulous

2011-10-26T20:31:00.003-06:00

Wow, it's actually here. Today, at 2:22pm, I officially turned 40. I know that's an age that women often start feeling "old" and have those "empty nest" moments, as those of us who were young mothers are watching our baby birds take flight. For me, I think 40 is a wonderful beginning to a new season in life.

I recall being 25 thinking that 30 would be my big year, the age that I'd be really grown, that people (mostly in my family) would actually take me seriously and afford me some respect. What I found wasn't all I'd expected, so then it was 35 when I thought this upswing in the respect department would happen. Then 35 came and went. Looking back on my life 5 years ago, I became determined that 40 would be my year. I don't really know why I've felt these things about my age all along. Maybe it was the unusual family structure I'd had. When I was born, my sister and brother (along with my womb donor) were adults, and I was taken by grandparents who had raised their children and now were raising me. My family dynamic was always weird. Once my mama and daddy were gone, I had to grow up fast. So maybe that was it. I had to be an adult very young- was made to work while also getting good grades in school, was in charge of cleaning a house where I wasn't wanted and doing laundry for people I despised. Maybe that's what's given me such issues with the number of years I've lived. I grew up so fast that I didn't get a chance to live a normal life.

Looking back over 40 years is, in many ways, surreal. It's like a movie, my life. Born to an unwed mother who didn't want her, raised by the most amazing people I've ever known, then broken down piece by piece by the very woman that birthed me. I think my life, of early tragedies and continued loss, has been all careening to a wonderful, and wonderfully awkward, epiphany about being grown, and all that acceptance I've searched for all my life, with my family and outsiders as well. Now I'm 40, and I have, maybe just today, maybe in the wrap-up of 40 years, finally had an epiphany. I have spent a huge chunk of my life making everyone else happy, or trying desperately to. I've taken care of people I barely new and my closest family. I've sat in hospitals with kids, Honey and friends. I've been there through 3 births, 2 marriages, cancer, fights for life and the sorrowful funerals where amazing people were grieved and missed. I have prayed more times than I can count that someone be well, something good be done, or that I'd have a family that loved and respected me just for being me.

I am 40, and somehow, I'm just now looking back to how things went, and think about where I was wanting to go. I couldn't have written it, never could have fathomed 40 years of one life. I don't know how, but it's all so clear right now. I was meant to BE. Notice I didn't add anything like wife, mother, employee, etc. I was just meant to be...like all of us. Our lives are too privately lived, I often think, because we are always supposed to "be" something, and I know in my case, no one ever tried to help me just BE. They expected me to be what they wanted, and that was plainly not myself. Parents and teachers ask what we want to be when we grow up, how old is old really; when we get to the middle of our lives (if we're so blessed) everyone wants to know how it was for the first half. It's today that matters. We cannot bring anything from the past or future into view without learning to accept that it's RIGHT NOW that's important.

Today I spent my day having a nice breakfast with Honey, and then we went for a long drive. We ended the day by going to Davy Crockett's birthplace and saw the Nolichucky River. I got some beautiful pics of this beautiful state that's now my home. It was a fabulous day. I laughed like I haven't laughed in a long time, and I didn't care who heard me. I ate a great breakfast, talked to the waitress and had the best raspberry lemonade I'd ever had. Honey and I just hung out, in that comfortable-silence sort of way. We just rolled down the windows and let in the sunshine and the fresh air.

Part of my epiphany was that I can't keep living in a past that will never be fixed, and I don't need to mourn it anymore. I also realized that my future isn't any more certain than anyone else's. Tomorrow might not come, especially when so much else is wrong with my body, but really, everyone's got the same issue. We're here now, and so many people take that for granted. I have, but it's done me no good.

I realize that tossing my past out means a lot of boxes and dust fall off the shelves of my soul, but it feels good. I finally feel grown up. I finally feel like it doesn't matter a hoot what anyone thinks of me, family or not. I finally feel like I'm old enough to deserve their respect, but now, I just don't give a damn if they respect me or not. Hell, I don't care if they don't like me. Some I haven't seen in decades, some, well, let's just say it's been a while. I am me. I just need to be me. But I was the one who allowed all those hurt feelings to worm their way into my soul. Today, I'm tossing it all. All that old baggage needs to go. I've already started cleaning out that storage room where I've packed away hurt feelings, anger, frustration and more in my brain. I know there will be dusty corners where a therapist will likely be needed to sort me completely out. But I'm done with the silly assumption that I have to be some special age to deserve to be treated like and feel like a person in my own right.

My life recently changed completely. Everything I've known all my life has completely shifted in just the last few months. It wasn't what I wanted, but maybe it's what I needed. Sometimes God needs to give us a kick in the pants, and I got mine. Thankfully, I get it. Point well taken, God!

My goal for the rest of my life is to be me. To be me, I don't need anyone else to validate me. I don't need to be the scared girl who's afraid of everyone and everything, or the child who has lived without the benefits of parents or a real life of her own. I don't need to be a victim of my life, but I do need to be a survivor. I don't need to be afraid. I'm just another human on this planet, and I deserve to be myself. Now to try and find out who "myself" is!

Today was a great day. I feel like I've finally made it, but to what, I'm not quite sure. I think I need to wait till that pile of stored baggage clears out and see what's left. I know I'm in a place where I know that I'm worthy, valuable, loved and the best person I can be. I don't need to have anyone's approval to be me.

How old would you be if you didn't know how old you are?

--Satchel Paige--

A little something about one of my heroes

2011-10-24T08:54:00.003-06:00

I wanted to share something with you all. My sweet, dear friend JM has fibro, and then she got breast cancer. She's a fighter! I don't know how she's been able to continually smile and enjoy life the best way she can. She's definitely

Here's the link to the story done by Mama's Little Helper about my friend..and I hope you all read it!

An Admission

2011-10-22T18:49:00.002-06:00

Ok, so I admittedly have had a string of bad days. In fact, I've been downright bitchy. I admit it! I believe my reasons justify a bad mood, but even I got sick of myself. Last night, I had an intervention from God. I won't bore you with the details, but it accomplished something. He always seems to have a way of putting things in perspective, ya know?

I was reminded that Christmas is coming...a celebration of a son coming into the world. I have 2 boys that I love more than words can express who are back in CO while I'm now in TN. I worry about them, I miss them, and I wish there was some way we could be together. BUT...yes it's a big but, I know...BUT I have them. We can talk on the phone or over the internet. Technology's on my side here. There have been millions of people who watched a son go away and never knew what became of them. I can call my kids every day, and Will actually gets me on Skype quite a bit. I talk to him almost daily and I check in with Adam about every other day when I can get through to the halfway house.

Again, the Christmas thing....I love Christmas. I believe in Santa, love the cookie-making, love decorating the tree. I love it all. I wish all my kids could be here this year, but it won't happen that way. I'm not going to let it get me down. I'm going to do all I can to celebrate.

My sister told me to put on my big girl panties and deal with it. I wanted to shake her by the throat! BUT (yes, another one) I did wake up this morning with a new attitude. I don't "just deal" with anything. It is a process for me. This particular process had me on the phone to my MIL on her birthday (yesterday) for over an hour, crying and getting my feelings all out there. With all that talking, out came my stuttering, wrong word-choosing, mess from inside. The more I cried, the worse it got. She called Honey back last night and said she'd had no idea it was so bad, that I was so sick.

Another epiphany! I need to be more honest about being so sick. Honey and the kids all know that I stutter, say the wrong thing, and get all-around silly sounding. We usually laugh at it; laughter really does do the body good. I am trying to not be embarrassed about the horrible muscle spasms that, especially in public, make me feel like I'm the freak show for the day. Honey acts like nothing's wrong unless I tell him we need to take a break. I could be stuttering with big spasms and he just goes on doing what he was doing. This man doesn't get ruffled when it takes me 5 minutes to remember what I was just about to say, and he does a wonderful job taking care of me. How many hubbies out there are washing their wife's hair or help her get dressed? According to what I hear from many women who are ill is that husbands disappear when the illness is too much. I'm blessed to know that Honey will never stop taking care of me.

So, now I'm hoping that I can find some things to do around here, and I'm hoping that I qualify for the program out here for eye drs. I am also eager to have an MRI. Wow, never thought I'd say that! My speech issues aren't all because of fibro, and I'm having myoclonic spasms that happen about 3 a minute. They're mostly in my legs, but have had them all over. I'm also having what I think are absence, or petit mal, seizures. I just lose it for a few seconds, and get that look on my face that makes everyone run to my rescue so I don't fall. I haven't fallen, to my knowledge, but I've woken up with a couple of goose eggs on my head lately, so I don't really know. All I know is that I want to get good news, but I'm damn sure going to be prepared for the worst.

I took all my meds early last night and just crashed. I recall waking up in the middle of the night feeling emotionally drained, so I had a chat with the Big Guy. He put me back to sleep and worked His magic.

I realized that I may not get what I want, and I may never get to go back to Colorado. I have to make peace with this epiphany or it'll eat me alive. I strive to be supportive of those who need it, and Mama to those who may not! But my intentions are always good, and I'm pretty proud of the fact that I work hard to be the person everyone expects me to be. Sure, I have bad days...hell, I have bad months, but I try. Isn't that the point of life? We have to try. We can't have all rainbows and unicorns every day, or the journey wouldn't be beneficial. We're not here to be mollycoddled, we're here to learn. I am hanging on to this newly found revelation so that I learn. I found out long ago that these lessons we're given have a purpose, even if we don't like it!

Living here means we have more money to spend on things that we didn't have before. I have 2 boxes to send out of things the boys need and birthday presents. Being here means, I pray, that I'll have access to one of the best hospitals out here, just down the street from me. Living here means that we'll have things we need, and will be more able to afford the bills. There are HUGE financial bonuses we have by living here.

There's always good with the bad, right? The universe is full of balancing acts...old/new, alive/dead, rich/poor, etc...It's easy to get caught up in the bad, especially being bipolar and depressive, but I know it doesn't do me any good to feel that way. Sometimes I can't find the good, so I get it out online or on the phone with my MIL or Honey. It may come out with tears and anger and fear, or it may come out in a ready-to-resolve attitude. I'm a constant source of frustration to a very logical Honey and MIL. I let my emotions take over. They are as logical and have the emotions of Vulcans. Ok maybe it's not that bad, but the logic part, yeah, they're both Vulcan.

Anyway, shit happens. It just does. I can make it a good day or not. It's all up to me. I hope that no one thinks of me as a whiny bitch, but if you do, it's ok. You're entitled to your opinions.

No vision and you perish;
No ideal, and you're lost;
Your heart must ever cherish
Some faith at any cost.
Some hope, some dream to cling to,
Some rainbow in the sky,
Some melody to sing to,
Some service that is high.
~Harriet Du Autermont

Blessed and Broken

2011-10-16T19:54:00.003-06:00

Well, we've been blessed. Someone very close to us is paying for us to move back to CO. Having a hard time finding a place we think we'll be able to afford, but since we're pretty much willing to move to so many different places, I'm hoping it will happen soon. Honey says we need to spend November here, and then the goal is to move at the end of the month. I just want to put things in boxes and leave, but it's not that easy!

The idea of packing and moving again does scare me. Last time, it took me days to get over the 3 day truck ride. I am hoping to get some doctor's opinion on my loss of eyesight. Thank goodness that Dragon is easy to use. When my friend passed away last year, her mom gave me the program. I've been lazy about training with it, but now I don't really have a choice. Between the failing eyesight and the arthritis in my hands, typing isn't easy. And somehow I've become dyslexic or something. I'm losing my ability to spell, which is really hard on a writer/editor. I am always making mistakes, but Dragon doesn't, and that helps.

All I can really do is pray for change. We're trying so hard to make it all work. It's frustrating, and I don't deal well with frustration. I have a hard time handing my life over to God, although I don't really know why. Maybe I'm just a control freak. Of course, every time I do give in, God helps me out again. I know I'm blessed in so many ways. Through so many things, I've just given it to the Cross. When my son was going through all his crap, I had to actually go through the motions in my mind of laying him at the foot of the Cross. I am visual, so I imagine it...every time life gets screwed up, I always have that one place to go. I know without a doubt that He's there and listening to me. While my prayers aren't always answered, I know that God's got me covered.

Living in this broken and bent body, I know it's for a purpose. Every pain, every migraine, every time that I fall, I know I'll get through it. Sometimes all I can do is lay there and ask for mercy. I hate this prison of a body that I'm in. Some people seem to think I'm faking. Who in their right mind would fake this? Who would want this life? Nobody. I wouldn't wish this hell on anyone.

I hope that I'll understand this suffering someday. It may be my last day but I hope it happens. I believe there is a purpose and design for everything. We're not meant to know everything, and that's ok. I continue to pray and be thankful for what I have. I try to be loving, generous, kind and all sorts of good things. Some days I don't meet any of those, but I try.

I'm a quote fanatic, so here's one that popped up for me today. It's being broken that gives us a look into our souls and find peace.

Blessings alone do not open our eyes. Indeed, blessings by themselves tend to close our eyes. We do not come to know Him in the blessing, but in the breaking. --Chip Brogden

December 1, 2012

2011-10-12T23:39:00.002-06:00

Oh yeah! I forgot to mention that we're going to be back around December 1! Please pray that it all goes well. Thank the good Lord that we have family who love us no matter what, just the way we feel about our kids. Family is more important than anything!

Can't wait to get back!

Laughing at Liars

2011-10-12T22:43:00.000-06:00

Wow, some things never change. I often think that there are people out there who are so miserable in their own lives that they just have to spread it all around. People get involved in things where they have no business being, and they only care about their own side(s). The truth seems to be more and more rare these days, and some people refuse to rise above their raisin' no matter what happens.

I've dealt with some sketchy folks in my life, and it's rare that I feel threatened or scared or anything. Mostly I just brush them off, because no one who feels the need to act an ass is worth that much of my time. If you don't like me, I'm perfectly fine with that, but don't go off spouting lies and crap when you don't know a damn thing about me. There are, however, moments when I can't help but feel angry. Sometimes people feel the need to be scandalous so they look better than they are. It's pathetic really. It's hard to be angry at someone who is just so damn ridiculous. Some people, well, you just have to laugh at them. Sometimes it takes a restraining order. Still, it's pathetic.

For the record, I have 20+ medical diagnoses from real doctors, not just folks who think they are. I would love to work, but since I use Dragon because of my arthritis, I can't even really type well any more. It's a neat program and very useful. I left a job I loved at the request of all my doctors who felt that I couldn't continue at what was the best job I've ever had. I no longer get to drive because of ocular migraines, and I am waiting on a dr. to determine if I'm also losing my sight now. I require a wheelchair. But if you don't want to believe all that, fine. I don't give a shit what you think of me, never have, never will. But there are many of you who'll read that and know that it's not you! LOL I'm blessed with lots of amazing friends who know me, and I love you all.

I don't count my worth based on others' opinion of me or my illnesses. I count my worth by the people who love me unconditionally, not someone who cannot even express kindness or compassion and thinks they're now the spokesman for my life. It's been many years of what I think is an unhealthy relationship. I know that karma is a bitch, that's for sure. Karma is a bitch. Everything comes around again.

So, my feathers remain unruffled. But I appreciate the good laugh of the comments of Wisewoman (bad choice of names IMHO). Even got an extra laugh to see that someone started an account just to talk shit about me. No problem. I don't care now, I never have, and I never will. I know I'm a good person, an honest person, and a damn good mother.

If evil be spoken of you and it be true, correct yourself, if it be a lie, laugh at it.

--Epictetus--