I have to go. I have to go. Where the &^%$ does everybody have to go?

It's been a hell of a year. People that I thought would be in my life, people I love, have drifted away. I've had several procedures, surgeries, and lots of tests. My "best" friends have vanished, my parents are gone. I feel so alone and I can't figure out what the hell just happened most of the time.

There's a line in the movie "Gia" that keep playing through my head. She says " everybody that I love keeps going away from me....and it hurts". She's this beautiful supermodel that has the whole world at her finger tips, but all she wants is just to have somebody stay with her, love her. I'm never going to be a super model, and I definitely don't have the world at my beck and call, but all I want is to be loved. That's all anybody wants.

The new acceptable attitude is just to "be positive" and be friggin' overjoyed to be alive. I don't do bright and shiny; I never have. But I know what it feels like to find the joy in a moment. It just sneaks up on you and suddenly, you're alive and in that moment with everything you are, and inside of what joy really is. I know how that feels. I have had those moments. Those moments when you are just....happy, really really happy.

I'm not an unhappy person, but I'm just not overly bright and shiny. And I believe that we all can't be happy and positive all the time. It's not good for you. People need to know it's okay to be frustrated or hurt or sad. They need to know that we all have a right to mourn change or loss. They need to be able to be real.

But what I'm seeing lately is that people move away from someone that might be working their way through anger and discovering what's behind it (I believe that anger is never a genuine emotion, it's like a curtain and you always have to investigate what's behind it and deal with *that* emotion....but that's another blog), or mourning a loss or a change in their lives. But all too often we're doing these things behind closed doors.

The society we live in have become all about the social facade. If you're not happy and spreading positivity, well....then people tend to have other things to do. And an awful lot of people are simply wrapped up in their own lives. I'm not seeing people reaching out to each other and caring about what you're going through. What happened to being there with your friends? Going through their rough times with them, and celebrating the good stuff together? We're closing up and moving away and letting go much too easily.

I've played the game of maintaining the social facade and it almost ended my life. I fell apart and went a little crazy for a few months. I thought about jumping off the bridge or swallowing a bottle of pills. Maintaining the social facade was not a good thing. And I swore I would never get wrapped up in trying to be somebody I wasn't ever again. What's that saying? I'd rather be hated for who I am that loved for someone I am not. Yeah.

But how do you say to someone...you hurt me? How do you reach out and say I need you to care about me and my stuff too? How do you reach out to someone in a society that have left us more closed off and closed minded than we all were 10 years ago? How do we reach out when we're all so afraid of being burned or ignored. How do we change the mindset of only being wrapped up in oneself?

I want to be involved with my friends and family. I want to care about what they are going through and have them care about what I'm doing too. But I feel like there has been some sort of explosion and when I looked up, the people that I thought were my people were gone. Poof. Just a whiff of smoke left and their scent and I'm standing here with my head ringing wondering what the hell just happened. Wondering where everybody has to go.

pain = learning

There was a line in "Private Practice" this week that made me pause, and I knew right away that it would end up as a blog. Shelton (one of the resident shrinks, if you're not familiar with the show) says to someone else.."Unfortunately human beings need pain to grow and learn". I stopped. I ran the words through my head. I went over the line one more time. Oh wow....this was what I needed to hear. Today. This week. This year. I needed to hear those words. Because for me it was almost like validation, or maybe just one more of the puzzle pieces I had found, finally.

In 37 years or so on the planet I have faced a lot. I have faced more than one lifetime's worth of hope, and love, and loss, and moments. My life to me, is now divided into two sections, two parts. My life before was healthier, stronger, I could dance and I could run. I was young and beautiful and strong. And I had never really known the kind of loss that rips through your soul and divides your world.

 In 2001 I lost a child. A little girl that weighed about 9 ounces and was born too young to breathe. I was that 1%, that unimaginable number, I was that one in a million.....and I lost my baby girl.

And it almost destroyed me. I couldn't eat, I couldn't sleep. I couldn't think. They delivered her to save me (long story, not the much fun to tell so we'll just skip to the pertinent parts). If I did sleep, I slept with the light on for the first 6 months. I had nightmares, 2,3,4 times a week for almost 18 months. My body was trying to deal with everything I had been put through, it was trying to regenerate lost blood and heal a broken heart. My mind and my soul just took a vacation because I was just a zombie for a good part of that first year
I went home after I was discharged, told to rest and let my body mend.

But my darling ,sweet husband came home more grateful that he hadn't lost his wife of less than 2 years. I've been contemplating that in the last few years. How hard that must have been. I was devastated and he was hurting for our loss, but he was grateful for getting to keep what he wanted more than anything else.



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We waited 9 months and after many long late night discussions, swaying from a yes to a we can't survive that again, we went with yes and tried one last time to have a child.  The docs answered up and said we had one more shot at a healthy baby, and then something drastic would need to happen to either P or I so that somebody's baby making ability was shut down, and we knew they were right. What needed to be taken care of was.

And it was a hhaarrdd pregnancy, I got tossed over to the high priority team, I was a "complicated OB patient " due to the fat that I had suffered two miscarriages after having two healthy children 10 years ago. I believe in miracles, and this is one of the reasons why: Dr. Cynthia Wilkes saved my life the first time. She was able to see the labs and the scans, and the charted meds and suddenly.........she saw what everybody missed and sent me to Straub's Trauma One Center. She couldn't be there at the very end, but she treated me post delivery. I went to see her a few weeks after delivery, telling her that I can't eat, or think. All the while, bawling my eyes out. She said one of the greatest things I have ever heard anyone say as a doctor, "I can not medicate it out of you, you have to grieve. You have to deal with this." At the time, I wondered if  could.

But with the woman's amazing hope and strength, she got me to 20 weeks through my final pregnancy.  And she was amazing. She never gave up on me. And I have a beautiful baby girl who is almost 9 now because of her unfailing ability as an OB.

My "before" is my life before the pregnancy in 2001 that almost killed me and claimed my baby girl. My "after" is the 10 years that have passed since that. My husband and I have faced the kinds of things that destroy people and tear apart marriages. And we did struggle because of these things. We did almost break down, but at the last minute, what really existed between us was still there by the skin of our teeth and we pulled ourselves and our marriage out from under it all.

Fast forward a few years and I'm smack in the middle of going through Chief's Induction with my husband, but he was 1,000 miles away. And the whole thing brought me to my knees.

The point in all of this is that people do indeed need pain to grow and learn. To me, that's an important piece of the puzzle because my life has been more difficult, more painful than a lot of other people that I know. My childhood was chaotic and hurtful. I have lost family and friends and dealt with the aftermath of a suicide, leaving me feeling guilty and so regretful. I have hurt. I have felt the kind of agony in your soul that would tear a person down. But, somehow, I'm still standing.

I believe that we come back. I believe that we come back until we get it right, and I believe that this is my last run through. This is my last time here. So I have a lot of things that I need to get right. I have a lot of things to learn, so I've had a lot of pain.

10 Years Later

Xunnie's been going through a lot this year.The doctors have re-opened all of my tests and so I have a lot of people poking and prodding at me these days. My baby girl moved away, grew up on me, and decided to get married. We've moved around and had to deal with people that don't make any sense. And my parents have now each individually and for their own reasons walked away from me.

I haven't talked to my mother in eight months. I cried all the way home from my hematologist's office after my appointment yesterday. I cried out of frustration and out of inconclusive test results, and out of the kindness he showed me, and I cried because I want my mom. I want my daddy. I want somebody to hold me and tell me that it'll be okay and they love me.

I have a wonderful husband who does just that, and I have these amazing people in my life that I am lucky enough to call my friends. They are kind and relate to all these different parts of my life and they are some of the best people I have ever met in my entire life. I have great friends. And I have fantastic little people in my life. My kids have turned out to be these smart, compassionate, empathetic people who love their mommy so much. I have a great little kitty even. My Phoebe girl is the sweetest and most patient cat I have ever seen. Sara puts her through everything but actually putting doll clothes on her and shoving her around in a shopping cart. And she never scratches. She's sweet and funny and I'm so lucky that I rescued her.

The funniest thing my kitty has ever done was: on the final night of induction my husband was gone all night for Navy events, and so I was home alone. She came to sleep on my bed with me and brought her teddy bear with her. I collect bears and have about 85 teddy bears and my Phoebe chose one as her own and she drags it all over the house and wrestles with it. Well, she came to sleep with me because daddy wasn't home (side note: she sleeps with me about half of the time....with and without daddy home) and this time she brought her teddy bear.

I have people in my life that are really great and love me so much, and I love them totally and completely and with my whole heart, and I even get to have Ging, who would do anything to protect me. But I miss having my mom. And I miss being able to have a daddy. And I wish I was in a place and that they were in a place that we could all figure out enough to try to be family again. Not my mother and father for each other , but each of them for me. I don't know if my mother and I will ever be there again, and I know my daddy won't be. But it doesn't mean that there isn't a little girl inside of me that misses them.

This year has been especially poignant because it's been 10 years since I started going through all of this. Ten years ago I lost Angie, my baby girl who was born too soon. Ten years since I started having symptoms that didn't add up. Ten years that I have been hurting and slowly losing my abilities. I take it out in my crocheting now, and my cooking that I'm so proud of. I take out the ability to run, or dance in the ability to create now. I am learning how to crochet. I am learning how to be an even better cook. And I am writing.

So take a little bit of time to light a candle, or send up a prayer, or meditate on some positive energy, or send out a little bit of hope for the people that you love and for the people on your Facebook pages. I mean, that's what we're all here for, right? Love each other.

time and circles and whatever's in my head

I either don't write for sometimes months at a time, or I am constantly writing, mostly in my head. Example: I'm standing in the shower today thinking of some real life issues that need addressing and somehow I start thinking of the bigger picture.

Things like; at one point in time, I thought my ex-husband was it. THAT was were I was supposed to be. But then I wasn't. Now I am sure that my purpose in life is to give my husband my time and teach him the things that he doesn't understand. Poor Mr. straight-and-narrow ended up married to me. He married a girl that just had one little tattoo on her arm from when she was 20 and she was a country girl. I've tried to be a country girl, a mid-western girl, and a west coast girl, but none of them ever worked for me.

Now the poor guy, the one who lives in a world where there are rules and SOPs (standards of procedure) and lines in the sand, is married to me. Somebody who these days has 4 or 5 tattoos and is planning to get more soon, has her nose pierced, and her hair is never the same length or color from year to year. I embody the tortured writer's soul occasionally. I ask him all the time what the hell he is doing with me. But somehow it works.

We got into an argument recently (married people argue?? who knew??) and I opened my heart and my mind and asked for guidance. I'm a Buddhist, so I asked the universe, the karma gods, and Buddha what am I supposed to do right now? The answer came to me as I meditated. Love is always the answer. Love the people you have in your life. Teach them and be open to their teachings for you.

I have spent my whole life saying "I want to go home.....I just don't know where it is". This gypsy soul has searched through the west coast, Hawaii, the south, and the Midwest for some place that felt like home, (see above) and it was only a few years ago when I ended up in a place I'd never thought to go. I got to Maine through a series of crazy unforeseen steps. I originally ended back up in Michigan and now I realize that I was there for a completely different reason that I thought. I was where I needed to be for my hip surgery, and then it was time for me to move on. I got to Maine and something in my soul whispered 'you're home' .

My point is you never know if you're at some point in your life for your own reason, is this the important stuff, or other, bigger reasons that you don't know yet. Some times you just have to close your eyes and wait for the answers. No matter what faith you have, they will come to you.

I am currently stationed back in Maryland on my husband's last tour in the Navy and although I wasn't thrilled to be here, and living out in the middle of no where presents some challenges. I am here because finally after all these years, I am really getting some where with my doctors, and I believe when we leave here in two years (because right now, I just can't see retiring here) I will have a diagnosis. Finally a firm diagnosis and an understanding of what's wrong with me and a treatment plan. So I hold onto that. My hubs is here to network with the people he needs to talk to as he nears retiring from active duty and I am here for some answers.

Like I said, you just never know if it's your own reasons that bring you to a place or if there is a bigger plan. The important stuff never shows up in your best clothes or scheduled celebrations. It creeps up on you in the ordinary day to day life, in the moments when you're not looking, and then....suddenly.....you get it.

the class of 1991

It's after 11 o'clock at night. I just took all my nighttime meds and hubs and I are settling in for the evening. The animals are fed and the day is winding down. It's time for bed soon, so why does inspiration otherwise known as (occasionally or sometimes my best writing) strike at these odd hours. I do more writing (even if it in notebooks or in my head) in these odd hours than at any other time during my day. Even when I want to sit down and write in the morning, but alas it comes late at night.

I have finally started (in somewhat earnest) writing my book. The first 1027 words are in a document saved to my desktop, so these days I find myself putting more and more things throughout my day in the context of how does this relate to my story? The memoir that I want to share.

Today I found a link to a business that somebody I went to school with forever ago is running. It got me to thinking. I see people that I sat in class with that have become chiropractors, massage therapists, business owners, business people, analysts, financial something-or-other....and I thought. What have I done? I don't have my own business or travel the world for meetings. So are they more successful than I have been? Out of the people that graduated in my class, what are we out in the world now?

Then I thought, wait a minute. I am a writer*, a blogger, a mother, and a Navy Wife (something I take great pride in). I serve our country too, just in a different capacity. I tell my oldest daughter that because she is a military wife now too. She'll be 19 tomorrow and she's married to a Marine. I make a difference with my blog and my Facebook page to women I know very well and women I have never met. I do the research for chronic pain conditions and I share the newest information with people that are struggling with the kind of pain that would make most people cross their eyes, and these people do it every single day. I know this because I do too.

And I'm a home schooler. I have taken on the task of raising and educating my youngest child because I honestly believe I can do a better job then the public school system. I have a college degree and I have the love and the hope of sending my kids out into the world to make a difference. My oldest is already out there, and she makes a difference in the people she has in her life and I'm proud of her for that. My son graduates next year, and he will go out there and be a good man.

So what really is the class of 1991? We're friends, and lovers, and fighters, and business people, and wives, and husbands, and students, and parents. I haven't kept up with the people that went off to business school and work in suits and offices with secretaries. But I found out that Steph and I share a bond of broken hearts and unimaginable pain. I found out after all these years that K and I share a chronic pain condition and we both know about live in and around the Navy. S and I are both married to the military, through our husbands, and through our service. We take care of everything when our brave husbands are away. And if it can break, blow up, or bleed while they are gone, it will. And we handle it with amazing strength and grace.

I myself have survived death, taxes and lightening literally hitting our house. Dead armadillos and cars that won't start, blown pipes, and birthdays spent far away from one another.

But out of the class of 1991, who are we twenty years later? Some of us are still friends, some of us drifted apart. Some of us bounced around for a while and then found each other again. I play Words with Friends with D. After all these years, I still get to hang out a little bit through game apps with the guy that I spent my junior and senior year hanging out with because we both took the new kid placement tests at the same time. I chat with Steph and share youtube videos posted by K. And even by one of my bestest friends who graduated in our year, but she was 6000 miles away when it happened. My Gingy. I graduated with her too.


                                                 LOVE IS GREAT AND SEX IS FUN
                                                     WE ARE THE CLASS OF 91!!


*I have been published. Once back in 1999, in  a book of poetry.so yes, I'm a writer =)

A New Way of Looking at It

I'm the kind of person that gets locked up inside my own head, so sometimes the simplest and best ways of looking at something don't immediately occur to me.

If, for example, someone from my past had reappeared in my life and influenced me making decisions that (at the time I thought were good decisions)but maybe didn't end up being what I needed in the long term but were some how just what I needed then, and because of those decisions I ended up being where I needed to be when I needed to be there, but after all of that, it was time to move on.

What I'm saying if that if I believed in a higher power and miracles, I got one 3 1/2 years ago and I was just where I needed to be when I tore the cartilage in my hip, and found the #2 surgeon in the country. And now it's time for me to move on and see what the rest of the universe has in store for me. I needed to be in Michigan for my hip surgery, but that doesn't mean that I shouldn't realize that the promises made to me were just lies in disguise. And I need to see them for what they are. And I need to know that the people that made promises to me are who I thought they were ten years ago.

People change, but seldom.

Wanted: Lots of hugs and hope

Everything is going to be okay. I keep telling myself everything is going to be okay, because right now I'm feeling a little like spaghetti. I've heard it said that men are like waffles and women are like spaghetti. Waffles have compartments and segregate what you put on them, or in them. Neat little squares that separate everything. Spaghetti gets all mixed up and wound up together. Every noodle is entangled in a bunch of other noodles and it ends up being one big ball, all bunched up together.

Right now I have a lot of stuff and I feel like spaghetti. If you've followed my blog for any length of time, you know I whine....sometimes...a little bit, when it all gets to be a lot to deal with. But right now I have A LOT. And I'm a little scared. And I wish I had parents. But I have really great friends, and wonderful kids, and a strong, awesome hubby. I just feel like this is a lot to put just on him right now though. So I'm asking for hugs, and hope.

I have five doctors right now. And procedures and blood tests and lots of needles scheduled over the next month. A primary care doc, a pain specialist, a pulmonologist, a urologist, and an allergist. I went to my urologist today and the good news is he is willing to jump right in and figure out what's wrong and ordered tests and procedures. The bad news is there is still an infection and blood in my urine and they don't know why. So I have blood tests and a CT with contrast and a cystoscopic procedure to schedule. That mans they are going to put me under a general anesthetic and take a look inside my urinary tract to see what the problem is.

I also have a thyroid panel, epidural shots, and allergy test coming up too. Two blood tests, three IVs, shots in my spine, and allergy tests. That's a lot of needles and I don't usually spook too easily, but I'm scared.

So, I know I'm a pain in the ass, and I know I'm whining a little bit, but I am asking for an extra prayer, or some good karma, or a little extra hope right now.

UPDATE:
My CT (with contrast, yuck) is at 6:30 am on the 4th.
My cystoscopy is the 9th, and as long as everything goes well, I should be able to come home that day. The doc will be taking a look in my urinary tract and taking biopsies/removing any kidney stones while he is in there.
My third and final set of epidural shots are on the 12th.

I'm pretty sure I'll be happy if I never see another needle again.

Is There A Plan?

So....Hubs and I just saw "The Adjustment Bureau" and it was one of those movies that I walked out of thinking that they might be just a little bit right. Just like when I saw "The Matrix" and I thought they might be on to something too. I know, I'm a freak. But if you've seen it, you're probably thinking .....they might be just a *little* bit right.

I have been writing a blog in my head for the last couple of days and the movie just tied right in. What if we meet people that are supposed to make a difference in our life? I met B over 20 years ago ....on a trip we both pretty much took to California for just that summer. Her father lived across the street from mine...and well, it was fate. =) I haven't seen her in over 20 years, but I love her just the same, and she is still one of my people.

I met Ging in Maine. On a whim, at the family picnic. Never saw her again until we both moved to Florida. And now she's my people.

I met C because out of ALL the wives hubs could have called to come get me because he couldn't, he asked her. We both wound up moving to Maryland, and now she is one of my best friends and the one that has stood by me when things got really, really hard. She is my people.

Crazy chances, all of them. But the most amazing story is me meeting and marrying the hubs. I met him before I knew it. But I had big, blond hair then and I smoked. Everything that he didn't like, but I made an impression and I was memorable. Then I went on with my life, moved around the country and finally met him again, and that was it. I have made all the difference in his life. He has made all the difference in mine.

So, if you've seen the movie (and if you haven't, I recommend you do), I pose this: What if you might be an agent for the plan and you don't know it? I have made a HUGE difference in my hubs life. I pushed (a little) to get married and I pushed (okay, a little more than a little) to have a baby. And it changed his whole world.

I have met people that have made all the difference to me. I have learned how to love. I have learned how to not walk away, even when things get rumbly. I have learned how to love someone like a sister even though I don't have siblings. And I have learned how to have a good friend, and how to be a good friend. All by chance. All just because someone walked into my life by fate, or circumstance. And these people have changed my life.

So, is there a plan that we don't know about? Have you ever wondered how a choice you made turned around on you?

What My Child Has Learned

.....because I've been sick most of her life.

My youngest child is eight and I am always worried about how my challenges affect her childhood experience. I worry that she knows words like "prescriptions" and "specialist" way sooner than other kids. She can tell which doctor I'm seeing by how far we have to drive. And she understands that I have case managers and referrals.

It scares the hell out of me sometimes.

But then I think of things like: she thinks it's cool that I have parking placards and we don't have to park as far away from anything. She calls it "rock star parking". She understands that people get sick, and sometimes they die because of it, but sometimes they don't. And both things are okay. That's the way life goes. It begins and ends. She's not scared of doctors, or tests, or needles, or blood.

She knows what an IV is, and they don't scare the crap out of her. I can't say that I was at the same place when I was eight. I don't think most kids are. She understands surgery and that it means the doctors are helping people.

She's not afraid of hospitals and when we see a fire truck or an ambulance, she asks me if they are on their way to help somebody. Her vocabulary includes words that most kids don't know, but she has a lot more compassion because of it. She gets that some people walk slower than others and she doesn't get frustrated when they do.

The greatest things about my child seeing me go through surgeries and doctor's visits is that she understands people are all different, and sometimes they're sick and you can't see it from the outside. She's not scared or squeamish. She doesn't see anybody as "different".

I hate that she has challenges and understands things that most kids don't have to deal with, but I love that all of this inspires compassion and strength in her.

Warning: Grammar Nazi Rant

I just got an email telling me that I had a message on Facebook. I went to check Facebook and read said message and I started to twitch. "What is wrong with me?" I thought. "Why doesn't anybody else have this tiny little grammar Nazi inside of them?"

The only thing that drives me more crazy than using 'to" when you really mean 'too'....as in: in addition, or along with, is using 'your' when one might really mean you are or "you're".

It drives me up the wall. And I have to wonder if I am just really that OCD? Does nobody else hear this tiny voice that growls when they read "me to"? Doesn't it bug the hell out of you when you read "your okay"? Did I get issued a little grammar and spelling correction officer in my head in elementary school and miss it? Why does this drive me nuts when essentially the rest of the population could care less?

I have been writing since I was in middle school and I have always had an affinity for language as opposed to say...math. So I'm thinking it may just be that I pay more attention to language than most. I know the difference between 'wandering" (meandering around) and 'wondering (pondering....thinking about). Or 'they're' (they are), 'their' (showing ownership), and there (pertaining to the location). I have a compulsion to make sure I use to, too, and two correctly and my biggest OCD is probably 'your' and 'you're'. (And, yes, I do alphabetize my DVDs.)

I don't expect the general population to know when to use who and whom correctly because most people learn enough language to communicate effectively and leave it at that....and that's fine. But for the love of gawd, hit the 'o' button just one more time when you mean to express inclusion and turn 'to' into 'too'. Make friends with the apostrophe key and express "you are" in the tidy little "you're".

I'm certainly no where near perfect in my language use and I got plenty of corrections on my papers in college. I rush through typing in guild chat and miss a letter, or occasionally screw up the entire word. I get it. I shut the Grammar Nazi up a lot. But she definitely pokes her head up at too, to, and two. And your and you're. "Shut UP!", I tell her, "nobody else cares.....and for the most part people get their point across".

She annoys me, that snotty little spelling tyrant.

Life in a Petri Dish

I've been waiting for the phone call about my lab results. They took lots of blood last week when I went to see my PCM. She likes to see me on a pretty regular basis and stay on top of what's going on; and from what I hear from everybody else I know in the area, I have gotten unbelievably lucky in getting the doctor that I have at the clinic.

Aaannnyway......I expected news. They call if your lab results are fine and normal and everything is ducky, but I expected a phone call. The news was pretty good actually. My thyroid levels have dropped significantly, so my medication for that will be adjusted accordingly and I'll be going back in four weeks to have a complete thyroid panel drawn to make sure 1) the new dosage is working and doesn't need to be changed again and 2) they're nothing else going on with my endocrine system.

Everything else is within normal limits, but I'll still be summarily sent to a pulmonologist. Apparently there are still issues with my oxygen so I got told I would be adding a pulmonologist to the collection of specialists I have here. I wasn't asked if I thought I should see another specialist. I got told I was going. She's an awesome doctor and she cracks me up sometimes.

This is a somewhat bizarre experience sometimes....having your life encircled by medical tests, medications, appointments, and specialists. Even if I just wanted to run and hide from all of them (sometimes I do, sometimes I'm in it for the fight) I don't get that option anymore. I'm glad I'm getting good care and being taken seriously. I very rarely get treated like anything is simply "in my head" anymore, but it's still a lot to take in.

So, that's where I'm at in my petri dish right now. I don't know if anyone reads this or cares, but I thought that I would update. The d.h. keeps telling me to write...that maybe somebody somewhere is going through something similar and they'd like to know they're not alone.

The Melody of Heartbreak

I'm sitting here listening to a lot of music tonight, walking around in the agony and the heart ache of some songs and seeking solace and strength in others. Why, would you ask, are you listening to music that hurts? That reminds you of people and places now gone? Because those people and those places are never really gone and they should be remembered, but just occasionally. But it astonishes me that the heart break is still so fresh and raw.

My broken heart never really seems to heal and I'm sitting here listening to songs like "Who Knew?' by Pink or "Not Meant to Be" by Theory of a Deadman or "Stay" by Safetysuit and wondering if anyone has ever hurt this much. Then "Til I collapse" or "Lose Yourself" by Eminem comes on my playlist (yes....it's a very eclectic mix.....there's no telling what the next song will be when it's on shuffle) and I find strength and think that maybe if someone else has survived this much heart break, I can too. 

I listen to "F*kin Perfect" by Pink over and over, soaring through the violins and drum beat and holding onto her searing voice. Finding hope and time in her journey through the lyrics. Waiting for the crescendo of the song and absorbing the promise and strength because I really, really need it right now. "Not Ready to Make Nice" comes on after that and I wander through my own struggle in my mind as I listen to the lyrics. I know their journey, their reason for writing the song, and I think of how it connects to my life and who or what I'm not backing down from.

Then "Sex On Fire" comes on (Kings of Leon) and I hear freedom. I hear driving through Florida in the Spring with the sun roof open. Song after song, melody after melody, and I hear Michigan, Maine, Florida....and I miss every single place. I miss that year, that time, those people. I miss driving down those roads.

I wish I could be one of those people that just listens to music sometimes. That I could just hear something and like it or not like it without being emotionally entrenched in it. But then I think it really is an amazing gift to be able to see and feel memories. Even if it just rips my heart open some times. I skipped past "What You Give" by Tesla. Today, that's just seven and a half minutes of friggin ow. Then....."The Quest" by Bryn Christopher and I see the Grey's montage from the season finale last year in my head and remember falling in love with the song right away.

Jason Aldean comes on and I'm at the concert last summer. Trace Adkins....and I'm at the county fair in Michigan watching him. It's raining, but the show is awesome. "The House That Built Me" by Miranda Lambert comes on and I see the houses I grew up in, wondering through them in my mind and trying to figure out which one built me. She sings "I thought if I could touch this place or feel it, this brokenness inside me might start healing" and tears sting my eyes and I take a deep breath. Somewhere inside of me is still a little girl that's wondering how broken she is. 

"Angel" by Sarah Mclauchlan comes on and I brace for the memory of Angie, but find a softer place than I expected and a little bit of hope. The playlist continues, moving on to "Love Remains the Same" (Maine in the Spring....god, Brunswick is so beautiful)......further on to "Whatever" but Godsmack (greatest angry song...  EVAR) , still further on "Uprising" by Muse (awesome music for in the Nitro), and finally "You Can Do It" by Ice Cube comes on and I decide that's a good stopping point, and anyway my earphones are starting to hurt my ears. 

I've traveled through five or six states and a couple of decades. Found music that brings me to my knees, but I also found strength that I couldn't have found inside of me all on my own. "F*kin Perfect" is one of the greatest songs ever written, Listen to it when self doubt and the rest of the world are kicking your ass. The hope in the music was bigger than the part that would have brought me to my knees and I finished the playlist feeling just a little bit stronger. (Oh...that reminds me....gotta go download "A Little Bit Stronger" by Sara Evans). 

I wish I could write music and wade my way through hurt and hope with a melody, but I guess I'll just have to make do with writing about my journeys through music. 

 

Fiery Redhead? More Like Sensitive Redhead.

Apparently redheads have some thing in them that makes them more sensitive to their environments. I saw my primary doc yesterday and she added herself to the list of doctors and nurses that I've seen in the last year or two that told me that I might be struggling with sensitivities to meds or foods, or stress, or my environment and that they are now noticing that these things affect people that have naturally red hair more often.

It seems if there is a food sensitivity to be found, check your hair. Meds? If there's a side effect, a redhead will most likely have it. Allergies? Yep, redheads.

A little over a month ago, I had a full body reaction to what appeared to be some kind of allergen. Something set off the histamine receptors. What my doctor is now thinking is that the strain of the two procedures I had in two weeks in addition to an incident of high stress set off both of my H1 and H2 receptors. I learned yesterday that the body's H1 (histamine one) receptors show up as a rash or hives....some kind of a skin reaction. The H2 receptors (histamine two) are the ones in your stomach that produce acid. Both of mine went off. Apparently my body cried "UNCLE!!"

So, I got to thinking about it. I was always a sensitive child. I had food issues when I was very young. I started developing seasonal allergies in my teens. I have always had migraines (food issues and stress reactions). I must have been fun to raise. Add to that the trauma of my childhood and ....yay...you get me.

If you're trying to figure out a reaction from your body that shows up as a sensitive tummy or a skin reaction, you might want to look at your natural hair color. It could be that you're reacting to a side effect from a medication, a food issue, or something in your environment aggravating things. We redheads seem to react to something faster than everyone else.Check your stress level too. If a brunette might be able to juggle a few stressful things, you as a redhead might find that a little harder.

So, are redheads fiery? Sometimes. Are we more sensitive? It looks like we usually are.

A Book or Not A Book?

Write he says. Tell your story. I keep telling him no one would believe me. Everybody seems to be writing books these days, telling their story, sharing the memoirs.  Powerful, moving stories that help people deal with separation, grief, eating disorders, or traumatic childhoods. Would my story be worth telling or would it just get lost in the sea of memoirs and life stories published every day?

I keep telling myself that as tough as same of the odds I have faced, there are people that have overcome even more appalling odds. I have the first few pages of a book tucked away in my computer, but every time I open that file and stare at the screen, I can't figure out where to start the story. What point to make? What do I want to share and why?

The best moments in my life? The easy answers would be the birth of my children or my wedding day, but in truth they're more likely to be the kind of days that suddenly make memories. Laughing in the rain with my kids, dancing and just being in the moment on a night out in my 20's, rocking quietly with my baby and watching her breathe and just being grateful and quiet in the middle of the night.

The worst moments? The easy answers there would be the day my father walked away, or holding my tiny baby girl and saying goodbye to a life that never even got a chance. Those were crushing, along with every heartbreak and instant that just took my breath away, every time I said good-bye to someone I loved. I have cried as hard as I have laughed and I have definitely lived.


So, do I sit down and write the book? What's the point? What story would I tell and how would mine make a difference?

They Don't Come With A Manual.

Today is my son's 17th birthday. I never imagined him being 6 inches taller than me and so close to being an adult all those years ago. I just looked at his little football-shaped head and was happy I had a healthy little boy. He was the easiest to deliver, but has been the toughest to raise. He had a tendency to scowl at you when he was just a tiny little guy and he still makes that same face today. He had colic and breathing issues as a baby, and I almost lost him at a year old. He spiked a fever and they couldn't figure out why he was so sick, but he survived and came back from that, and walked three months late. Now he's as healthy as they come, having outgrown all of that.

That means I have a 17 year old and an 18 year old now, and I can't (for the life of me) figure out how THAT happened. I'm pretty sure I was like 18 yesterday, so some days I don't have any idea what I'm doing. But I get somethings right. My kids know that they are loved completely and unconditionally. They don't smoke, or drink, or do drugs. My son is still a virgin, and my daughter was until at least somewhere in her senior year...or maybe until after graduation. I'm not completely sure about that....but I'm good what just the info I have.

What am I getting wrong? Probably a lot of things, but I keep trying to learn from my stumblings and be a better parent. My kids are growing up in a world that tells them that jobs and driving licences are responsibility, not freedom, so I'm struggling to get them to step forward. But they're smart and capable people, and to me that's just as important.

They don't have a pause button or an off switch that might give me time to figure out what I need to do to handle something, and they don't come with a manual. I just told the d.h. yesterday that if I were to go back into psychology and choose a field to study more carefully, I would choose birth order and how no two children have the same parents. I am a completely different person to my eight year old than I am to my eighteen year old.

When I brought my oldest home, I looked, but there was no battery compartment and no off switch, so when I make a mistake, I just have to keep chugging forward and figure it out on the fly.

They're good kids. I get some things right. I get some things wrong. If you happen to find that manual, send me a .pdf of it, would you?

Music

It never ceases to amaze me when I think of how much power music has. It takes me right back to that time in my life that was enveloped by that song, that genre. I can listen to cross-over country from the 80's and be right back on Washington street in Vallejo, eight or nine years old. I can listen to Chris Deburg and be in eighth grade again. I hear hair bands and I'm 16, 17, 18 years old...young, strong, and free. I hear CCR and I'm standing in my garage in Florida, watching these huge, fat raindrops from a sudden summer rainstorm with my kids. I hear music from 2007 and I'm in the middle of moving from Maryland to Michigan and my life is a little upside down. I can be right there again, feeling how I felt when I heard that song. It's a blessing and a curse because I can be in my memory, but sometimes that is just agony.

I'm going through hell with my daughter right now. She's 18 and headstrong and making her own life decisions. It's hard because I love her so much and I don't want to see her stumble. I'd give anything....anything......to roll the clock back 10 years and be standing in that garage again with her, listening to CCR and watching the rain. It's incredible how quickly the time passes. The days and years seem to take forever sometimes, but then you blink and they're walking up the aisle to get their diploma...and they're gone.

I don't think everyone has that same connection to music. The ability to be transported back in time to the beat. Like I said it's a blessing and a curse. I love that I can hear a song and close my eyes and relive the best moments in my life, but I also hurt just as much if that song is connected to a painful memory. "I Believe" by Diamond Rio will always remind me of how I felt when I lost Angie, and "One Night At A Time" will always remind me of the first time my husband picked me up and took me out to a nice restaurant and then the 50th State Fair.

I love that music connects me to people, whether they are still in my life or not. If I miss someone that's now gone, either because they've passed on or simply moved on with their life, I can listen to something that brings them back for just a few minutes. But sometimes that works against me because I'll get caught off-guard by a song on the radio or just somewhere in my day and BOOM...I get hit with a memory, whether I wanted it or not.

It never ceases to amaze me that a beat and a melody have so much power.

twenty, thirty, forty

I'm going to be 37 in three weeks, and I haven't quite figured out how I feel about it. This officially puts me in my late thirties now, right? What do you do when your body thinks it's in its sixties, but your mind is still somewhere in your late twenties or early thirties?
I handled turning 30 with relative ease actually. I freaked when I turned 27. For some reason reaching my "late twenties" just sent me over the edge. (was that really a decade ago now? holy crap.)But by the time I hit 30, I had three kids, was married, and pretty settled, so it wasn't very traumatic. The d.h. happened to be deployed for that one, so I took myself out to dinner too. 
So, now how does 37 look? Well, still married. I have been with the hubs for 12 1/2 years, married just over 11 of those. We have an 18 year old that I keep threatening kidnapping schemes to try to bring her back home, a 16 year old boy that tests my patience on a regular basis, and a 7 year old that I spend all day, every day with because we're working our way through third grade. Some days whether she likes it or not. 
If I died tomorrow, people would notice. I have friends and family, and it's fair to say in 37 years, I've made a pretty good life for myself. If C doesn't hear from me on twitter for a few days, she sends out a tweet making sure I'm still alive and in one piece. I had a friend send me a note on FB the other day asking after me because she had noticed I was quiet lately. That feels really good! If I completely disappear offline for a day, people notice and realize that typically means something is really wrong that day. I have loved ones, and I am grateful.
But I was thinking about my house the other day and noticed that if someone were to poke around, they might wonder how old the occupant is. I have medicine bottles stashed in several different places, depending on which medicine it is and when I need to take it. I have Ensure shakes in the fridge for the days I can't get much food down. My cane is in the front coat closet, and these days I occasionally ask the karma gods if I'm going to need to get it out soon because my hip has been bothering me. I have pain meds, nausea meds, thyroid meds, and sleep meds. It might make a person wonder. 
I always think that a person's home tells a lot about their story. Mine says that my body thinks it's somewhere in its sixties, but if you look through my computer, you'd see that my mind is still some where in my late twenties....maybe early thirties. I play video games, I still have all of my college papers stuck off in my documents, and I am on social networking sites goofing off. 
Do you ponder the years when your birthday comes up, spoonies? Are some years more significant than others?

Learning to be still through the pain

I wish I felt strong enough to handle what's coming, but after yesterday I just feel small, and weak, and scared. I struggled through another god awful migraine/ just-kill-me-now day yesterday, and I scheduled my next procedure and had my pain specialist change my meds.
I woke up yesterday with a headache, which is never a good sign. I've had migraines all my life (which must have made me a fun child to raise), so I've learned to be very,very still and escape from the pain. But it doesn't always work, if the pain comes in waves, sometimes I just can't help but to roll over and groan at the peak of the wave, but god knows I try to just be very still and escape into my head. Everybody has a place that they think of, that they escape to, when they are in pain or feeling sick, or whatever. Sometimes, it's imagining laying on the beach in the warm summer sun. You might try to think of the smell of the ocean and of the suntan lotion, the warmth on your body, and the gritty texture of the sand beneath you as you attempt to leave the pain behind.
Yesterday, I had "Fire and Rain" by James Taylor stuck in my head, so I kept thinking of the lyrics of the song. I imagined myself sitting in my mom's house in Hawaii with my daughter because I miss her so much. I thought about being somewhere else, anywhere else, because the pain was more than I could take. I concentrated on being very still, not moving at all, just breathing, as I escaped into my head, away from the hurt my body was struggling with. It's not an easy thing to do, and I sure have not mastered it yet. But I try, and I escape when I am in pain, or when I'm scared...or when I'm in the middle of a procedure that scares the hell out of me.
I scheduled the next step in handling the pain in my neck. It seems I have Facet Syndrome and the joints in the spine in the neck (specifically C6 and C7) are deteriorating and that's what's causing me pain. The solution to that is burning the nerves in those joints, or what's called a Rhizotomy. I've been with a friend of mine as she went through the procedure, and now that I'm facing it in my neck, it's really scary. But, Ging and I just tell ourselves that if we can get to the other side of that 30 minutes, it will be okay. Sometimes, you just have to concentrate on getting to the other side. 
I also had my meds changed from Percocet to Morphine. Apparently, there's some kind of barrier when it comes to pain meds and docs put you off and put you off, and then finally....they realize that you have something really wrong, and pow...pain meds. It's a hell of a process to be on pain meds in America these days...at least legitimately. But they finally give me what I need, and I comply with all the bullshit that goes along with it. 
So, be still my Spoonies, when the pain comes. Imagine the beaches in Hawaii. Escape to where you are safe and calm.

Fibro Ads

When I'm out and about, I don't look sick or like I have any kind of disability. If I were to have a handicap placard in my car and pull into one of those parking spaces and then get out of my car and walk into the store or restaurant, I would probably be one of those people that snarky people look at and think ' ugh, I hate it when perfectly healthy people take those parking spots'. 
I don't have a placard for my car, but I will eventually. And it will probably be before I look sick enough for most people to think I need one, and before I need my cane again or a wheelchair. 
My point is that there is no recovery for Fibromyalgia, or myo-fascial pain syndrome, or a thousand other invisible diseases. There's a whole nation of us that have things like Rheumatoid Arthritis or bulging disks, herniated disks, Osteo-Arthritis, Fibromyalgia, and a whole host of other pain disorders. 
No one can tell by looking at me that I have an artificial hip. or that someday that hip may fail or loosen and then I'm fooked. If I wouldn't have had my surgery almost three years ago, I'd already be in a wheelchair, having finally lost the ability to walk. But I'm getting sidetracked because my hip has been bothering me a lot lately. I still have arthritis in what's left of the bone in the area, and between going dancing at the Khaki Ball and the chilly, damp weather we've been having, I've been feeling it. So, every now and then I wonder if I'll lose the ability to walk someday. 
But what I was meaning to work my way towards was pointing out that there is no cure, so it really annoys me when "Fibromyalgia Clinics" advertise and spout that they offer recovery options for Fibro patients. That's like telling us that it's not a real disorder, and you could fix it if you just try hard enough. It IS true that symptoms can be mitigated by some meds for some people and by eliminating some foods from one's diet, but not everything works for everybody. And there is no cure.
My doctors are now telling me that I have more of a myo-fascial pain syndrome stemming from DJD, but I am still an advocate for Fibro. Because it doesn't matter what name you put on what's wrong with me, my existence doesn't change. It doesn't matter how you label it, I'm not going to get better.I know there are other Fibro patients out there that feel the same way. When we're fighting with our doctors, we wonder why they are fighting so hard against us when they know we're not going to get better either. The only thing you can do, doc, is keep me from getting worse. Why are you fighting with me?
This whole post came from a reader asking me about these billboards she saw with just "Fibromyalgia" and a phone number. She asked what are they advertising? Clinics? Meds that don't work? I have tried all of the current "FDA Approved" Fibro meds. They turn me into a crazy person. I finally put my foot down and told my doctors they were no longer allowed to mess with the chemistry in my brain.
I've seen plenty of progress in the last couple of years when it comes to Fibro, but I have seen setbacks too. What do you think, my darling readers, have I made an impact? Have I raised awareness or enlightened some of you? Have you learned something? Is there something else I need to address? Questions, comments, and input are always, always appreciated!
Thank you all again, for coming along on my journey, and for reading my ramblings!

The Velveteen Xunnie?

I was recently reminded of the book The Velveteen Rabbit, and specifically the part of the book during which the stuffed animals are having a discussion...
"'You BECOME,' the horse said to the rabbit. 'It doesn't happen all at once. It takes a very long time. Generally by the time you are REAL most of your hair has been loved off and your eyes drop out and you get loose in the joints and very shabby. But those things don't matter, because once you are real, you can't be ugly, except to people who don't understand.'"
I just received a package from the home medical supplies place, dropping off my new braces/pads for my elbows that I'm supposed to sleep in to protect the ulnar nerve so my arms don't fall asleep all the time. Sort of a silly thing to have to have, don't you think? But it got me to thinking that this isn't the first time I have had to have in-home medical supplies and care. I've had walkers and crutches. Oxygen tanks and braces. Nurses and physical therapists. 
So, is it true, do you think? If all my hair were to be rubbed off and as I get sort of shabby and loose in the joints, am I becoming more real? I suppose the argument could be made that all people go through that process. It is, after all, our elderly that are often the most beautiful if they have lived the life with the greatest love and it rubs off. It just so happens that Xunnie is aging a little faster than most people do.
So I was laying on my bed with ice on my neck a little while ago, wondering if I have become more real because of everything I have been through. I was wondering how I feel about facing the fifth surgery soon. I was wondering if living one's life on double time really opens up the big picture?
It's easy to get lost in details and drama, especially these days. My hope is that I have become more real and developed the ability to recognize what really matters, even if the hair has been loved off of it, and the eyes have dropped out, and it looks a little shabby. I hope that I am more real because of what I have been through and because I know I don't have the same kind of time someone else might.
A friend of mine recently asked me where I would be at 70 as she thought of her own mother's natural degeneration. I simply responded that I may never see 70. I won't have another 34 years. That must be hard to think about for the average thirty-something, but it's something I already know. But hopefully by then, all my hair will be loved off and I couldn't possibly be ugly, except to those who don't understand.

Perspective

I'm reading a new book called "An Unfinished Marriage" and it's interesting to see the life of a mother and wife from the outside after living inside of it for so many years. I just stumbled upon a page talking about how the author fractured her ankle and ended up having surgery to correct it, thereby putting her on bedrest for about eight weeks and the effect it had on her marriage of thirty years.
"....remembering that moment helps me realize that being helpless or weak has its place in the life of a marriage - that to let down one's guard, to be touched for reasons other than sex, can carry a couple to an unexpected level of intimacy." ( An Unfinished Marriage, p. 126). She goes on to talk about how she had always been the giver, which gave her the benefit of retaining control. I see myself in this because the d.h. and I just had a disagreement today about me feeling like he treated me as though I was helpless, and I objected because today was one of those days that I could do what I wanted, and what I needed to do around my house. 
I know there are days that I can't, days that I am not as self-sufficient as I used to be....as I'd like to be. But I can't just give up. I have to push myself to keep up with a mostly typical life of a thirty-something stay at home mom. But I had my eyes opened by that simple passage, and realized that I'm fighting to retain control as well. I'm much happier if I have control of the situation, and over my existence.
One of the tenants of life that I have impressed upon my children is that each person needs to fashion his or her own existence, or others will be more than happy to do it for you. One of the main struggles in a life of constant, chronic medical issues is that loss of control, and it's hard to face. Just like the author of the books says that she has never been comfortable receiving...I know very well that I have a hard time taking up time and space, and that's part of what I'm struggling with as I realize that I am weaker...and even sometimes helpless now.
I just thought that this was a good way to touch on another aspect of life as I know it. My docs still are saying it's quite probably not Fibro anymore, but instead DJD (Dejenerative Joint Disease), but life as I know it is pretty much the same. And I started this blog to raise awareness, to share what life is like for people like me, and Ging, and her mom, and many others. I suppose that includes touching on topics such as how living with a chronic condition affects our relationships.
Does it strain it sometimes? Absolutely. But my d.h. knows this is not what I chose. I wanted to be a dancer, but fate...well, she said no. Does it lead to a place where only he and I know? Yes, sometimes it does. Joan Anderson, the author of the book I'm reading, is right. It does lead to an unexpected level of intimacy. The balance of control shifts and you have to trust one another more than might typically be the case.
"....in sickness and in health..."

The pain I've been holding onto...

I'm a very musical person. I can't play a single instrument (I did play the flute in 5th grade...just not well....oh, and I played guitar in high school) and I don't write songs, but there is something in music that moves my soul and gives me life and breath. My heart is a dancer's heart, but my body...well, she says not so much. 
So, every once in a while I hear a song lyric that just takes my breathe away. Like literally, I just feel like I've had the wind knocked out of me, and I realize something for what it truly might be. I've been walking around for days with country music in my head from the Jason Aldean concert I went to last Sunday, so when a friend of mine posted something from what I knew to be an alternative band, I followed the link and listened to it thinking I would at least have something new in my head today.
This is the part that I remind you, my darling readers, that Fibro or myofascial pain syndrome or, well anything chronic medical condition really, is hugely tied to where your mental and emotional status is as well as taking care of oneself physically. My heart has been struggling with the fact that my oldest child is now 18, and graduated, and trying to find her way out in the big, bad world, and I would do anything to just gather her back up into my little nest and keep her and protect her....but I can't. I have to let go. I wasn't given a choice on this one. 
So, in this new song, I heard the lyric "the pain I've been holding onto" and it just really struck me. How often to we hold onto something that hurts without realizing it? How often does pain just become a part of who we are? I'm not just talking about the population that lives like I do, with physical pain, but even all of the healthy people. Do you walk around with something that hurt you and keeps hurting you, and not realize that you've been hurting so long, you've forgotten how not to hurt? 
I really love the lyrics of this song:

What do you think, readers? Even if this kind of music isn't your favorite, listen to the lyrics and think about your first scars. Did they fade? Are you holding onto pain? 
I am forever on a quest to understand the human mind, that's why I was a psych major. But all that did was tell me that exceptionally well educated people that spend their lives listening to people describe their early childhood don't have any more of a clue about our minds that the rest of us. 
We all walk around damaged in some way, but what pain are you holding on to?