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Archive for February, 2012

…boy is it a real slap in the face.

I got four packets in the mail from the people in Jackson who review cases for Social Security.  Back in 2008, they took one look at my medical records, and approved me.  The entire process took approximately three weeks.

Last summer, I got a packet in the mail while I was in the hospital that said my case was up for review.  After all, I was approved because the cancer I had was supposed to kill me, and well, I’m still alive.  So I sent in the required documentation and releases and statements and such.  Never heard from them again, so I assumed all was well.  You know what they say about assuming…

So the packets were already past due when I got them (due to us being out of town and then kinda forgetting to check our mail for…a week…so I called the lady referenced in them and explained that I was just getting to it.  She was perfectly fine with it and documented that I had called.  That was Monday.  All day yesterday I was gone to Jackson with my teens’ high school band for a band concert festival.  I had to go so I could bring my son, his girlfriend, and a fellow soccer player who is also a band member back with me so we could all go to my son’s soccer awards banquet last night.  I was unable to drive because I was so sick, so the band director very graciously allowed Jared to drive me, behind the bus and equipment truck, up instead of him riding the bus.  I had a seizure on the way, pretty sure, because of the way I acted afterwards…slurred speech, memory lapse, sore muscles, etc.  Then we rush home (almost three hour drive), get ready for the banquet in 15 minutes, and go to that.  By the time I got home, I was crushed from exhaustion.  I spent all day recuperating and put off making the soup I’d promised the family because I was just too sore and too sick to even get out of bed until this afternoon.  Typing this is physically draining…but I have a goal and I must at least try.

I sit down this afternoon and drag all four packets out to look at.  Thankfully, one is for Justin and I don’t have to worry about it (he has to state his observations, how HIS life has changed due to my illnesses, etc).  The other three were very extensive.  Sometimes I had to repeat things.  One was simply a questionaire of my last ten jobs, what the duties entailed, salary, hours worked, etc.  Boy, that was fun for a fibro patient to handle.  One thing we deal with is fuzzy memory.  I wrote “I don’t remember” on several of them.  The other two were much more in-depth.  I had to list what a typical day’s activities were for instance…had to answer personal care questions…sleep quality questions…list symptoms and ailments…state how my life has been changed, etc.

I decided to do it pretty much the way I see things since the second bout of cancer…I define life as “pre-2006” and “post-2006.”  2006 was the year my world literally fell apart…and because it was literally overnight, I still haven’t adjusted well.  I listed things I could no longer do…and the more I wrote, the longer and more pathetic the list became.  I listed the adjustments I’ve made to try to maintain a semblance of normality in my life in the past six years.  Again, the more I wrote, the more pathetic it seemed.  Finally I got tired of writing, and my hand was a solid knot, so I just summed it up the best I could, as honestly as I could.

The result was really startling when I read over it later.  When its all laid out in nice, orderly detail on sheets of paper, it really is like a slap in the face.  I haven’t realized just how bad things have become.  I can still get out of bed most days.  I can still cook a few times a week.  I can still dress myself (except for lace-up shoes…I have to have assistance there).  I can still brush my hair and my teeth.  I can still care for my cats, especially now that I have a Cat Genie and no longer have to force the kids to do the litter box.  I can still attend some of my children’s functions and spend time with them.  I have a lot to live for.

Then I look at the things I can NOT do anymore…and I cry.  Often.  I drive very little now because I never know when I’m going to get sick or have a seizure.  I stay cooped up inside the house most of the time.  I haven’t attended church in well over a year because sitting in the Sunday School chairs and in the Sanctuary pews cause so much pain for me that I literally can not sit still to finish the service, then I suffer for a couple days afterwards with muscle pain and cramps.  Its an excuse, and I realize this, but its also my reality.  I’ve let it interfere with my church attendance.  I can’t shop unless I get a scooter or force a family-member to push me in a wheelchair.  If I do try to walk around a store, such as Wal-Mart, I have to stop frequently to rest, and thank the store management for providing benches throughout the store.  When I travel in a car for a couple hours, my feet and legs swell so much its painful.  I don’t sleep much at all because of various nightmares, fears, bouts of nausea and vomiting, regular migraines, and general aches and pains from the nerve damage and from the Fibromyalgia.

I could go on.  I could keep listing things I can’t do anymore, things that affect me negatively now, and you’ll be left thinking I’m a superior hypochondriac.  Trust me, I don’t complain about *everything* that bothers me.  I gave up even trying years ago because I couldn’t stand whining and moaning every time I opened my mouth.  I still do it…but I could do it even more, and that bothers me.  It comes to a point that I throw my hands in the air and just shut up, go find a nice dark corner somewhere, and cry for a while.

I want to go back to work.  I thrived when I worked.  I loved being out of the house, meeting people, socializing.  Now I cringe when I think about going even to a family dinner, because the thought of socializing scares the crap out of me.  Crowds make me have trouble breathing, even small family crowds.  I feel helpless, unable to lift anything, no one wanting to let me help with anything because I look so frail and sick, or they’ve been told by my immediate family members about things that have happened to me during the week.  So I stay home on holidays and avoid gatherings altogether.  As far as getting out of the house to work, no employer in their right mind would hire a person who can’t stand more than a few minutes at a time, who can’t SIT more than a few minutes at a time in a regular seat, who could collapse unconscious with no warning at all.  There’s also the problem of transportation to and from work…there is no public transit system out here…its the country.  I can’t expect people to take time out of their day to drive me a half hour or more one way to drop me off, then come back several hours later to pick me back up.

I don’t like this “me.”  I want to be better.  I want to run again.  I want to walk again without pain.  I want to play with my daughter and enjoy my teenagers.  I want to go back to work.  I want so many things.  People constantly tell me “It could be worse, you could be dead.”  I want to slap them when they say that.  I look at people who have it so much worse than I do, yet have a better outlook on life, and I’m envious.  Why can’t I be that positive?  Why can’t I look forward to the future the way they do?

Once, I was a strong, confident, self-assured young woman who let nothing stop me from doing what I wanted to do.  People said I couldn’t be a helicopter mechanic because I didn’t even weigh 100 pounds.  I did it anyway.  People said I couldn’t shoot well because I was a girl.  I did it anyway.  People said I couldn’t do so many things, and it just fueled my ambition to do it anyway.  Now, people tell me I can still do anything I want because I’m *alive*…and I want to cry and shake my head in frustration because no matter how hard I try to do something, I end up paying for it for days afterward.  I know there’s a reason I’m still here.  I know there’s still life worth living and memories worth making.  I know all these things in my head, but they don’t comfort me much in the dead of the night when I’m struggling to get some rest.

So, we’ll see how this turns out.  Hopefully they won’t cancel my social security.  That would seriously throw my family into financial turmoil.  The trip to Disney was an extravagance we haven’t had in seven years, and as much as I enjoyed my children on that trip, I keep thinking now it was a mistake and maybe I should have went ahead and used the money to pay off a bill or two.  The reality is, my children will be gone and out of the house in a couple years…and I’ll still have bills anyway…so I chose to make some memories with my family while we had the opportunity to do so. 

This is going nowhere.  This whole post sounds like a poor, pitiful me type post.  I suppose I’m in a funk because I had to sit and write everything out for the Social Security review today, and anytime I try to list all the various things that are wrong with me, and the way my life has been impacted, I get depressed and feel like a whiny cry-baby.  So.  I suppose I should try to go get on the elliptical and see if I can make it a full two minutes this time…baby steps, right?

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Today Is Another Day

My favorite movie is “Gone With the Wind.”  I like the book even more.  “Tomorrow is another day” has been a recurring theme for me during my forty-two years on this Earth.  It has to be, with all the mistakes I make/have made LOL.

I think just writing about what I was feeling last night really helped me.  Even if no one ever looks at this blog, writing is helping me.  It helps me focus my thoughts on what’s really bothering me.  If I don’t write, I just sit here, being miserable, and not really knowing why.  When I write, I have to think about what I’m typing…it helps.

Justin rolled over at 2:20 this morning and wished me a Happy Birthday, then started snoring again.  My official time of birth per my birth certificate is 2:15 a.m., so that was really kinda cool…and awfully sweet.

My kids all woke me up this morning to wish me a Happy Birthday, and Justin did again too.  I’m still feeling a bit under the weather, but I think I may let Justin take me out to supper tonight.  Maybe.  LOL.  I might just let Katie cook her spaghetti as planned (she seasons it even better than I do…kid has a knack), and bake a cake, and just enjoy my family tonight.

Another birthday doesn’t mean much to me.  Its almost a hassle, but I can’t exactly wish for no more birthdays, now can I?  The alternative isn’t that attractive hehe.  Seriously though, I’m very typically bi-polar about it.  On the one hand, its like, ugh, I’m another year older.  Do I have to “celebrate” getting older? Seriously?  On the other hand, I’m here.  I’m alive.  I’m growing older with my husband and my children.  Can’t ask for much more than that, especially after all the health problems I’ve experienced the past six years.

So, Happy Birthday to me…and Today is another day after all.

*Just a side note…the picture I used is one I took myself.  One morning I was up “puttering around,” getting ready for work, and I heard a noise outside.  I looked out the back window, and saw the sunrise.  I grabbed my new SLR camera and stepped outside and snapped a picture, more goofing around than anything else.  I’ve always loved the resulting image.  This was literally taken on my back porch, standing one step outside my back door.  I’m frustrated, living so far from “civilization” at times, but I wouldn’t trade it for anything.

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Who Am I?

After my surgery on August 31, 2011, I had trouble taking my “crazy pills” once I went home from the hospital.  I tried valiantly for almost a week…throwing up after every time I took them, so I just quit.  Cold Turkey.  The withdrawal was horrendous, on top of trying to recover from major surgery, but I managed.  When I saw my shrink the last time (I think it was in December or January), he was impressed with how I was doing.  I’d lost forty pounds since my surgery.  I was in a “good place” mentally and emotionally.  I had better color than the last time he’d seen me.  So, he advised me not to go back on my meds, and to let him know if anything changed.

Its changed.  The past few weeks, I’ve really struggled.  Our family trip to Disney was ok I suppose…I was emotionally detached from my family most of the trip.  I just wasn’t “feeling” Disney like I always have in the past.  I was embarrassed to be in a wheelchair the entire time.  I felt like a burden on my family.  I was annoyed that even though it was February, there were still crowds of rude people there.  I noticed little things that I never would have seen at Disney in years previous…duct tape on some of the rides…missing sequins and braid from some of the castmembers’ costumes…ripped out hems…it seemed everything was getting me down.

Now I sit here on the cusp of my forty-second birthday.  In fact, in two and a half hours, I’ll be 42 “officially.”  I think back on my life, and really, I haven’t done any of the things I thought I would have.  I’ve had some gorgeous, smart, talented children…at least I got that part right.  But everything else…not so much.

I cry.  A lot.  Frequently.  I often have moments when I have to think really hard about whether a “memory” is really a memory or what I wish had happened instead.  I have a very active imagination, and its been working in overdrive since I lost Ruby in 2008.  Sometimes I actually look around for her…it gets quiet in the house during the day and I rush into another room to see what trouble she’s getting into…because when children get quiet, they’re getting into trouble, right?  The only problem is, I never knew Ruby.  I never held her.  I never even SAW her that I can remember.  I shouldn’t have this little life in my head where she lived and is a happy, healthy toddler now.  I sometimes look around, surprised that I’m living in Mississippi, and not stationed somewhere with the Army.  I forget that I left that life behind twenty years ago…instead I sometimes wake up, thinking I’m flying a helicopter on some medical mission.  That never happened.  The closest I ever came was getting to ride second seat on some maintenance test flights (one pilot, one crew chief).  But…sometimes I wake up and rush to get dressed, thinking I’m late for PT formation, and I can’t find my PT uniform, and panic before I remember that I haven’t had to wear a PT uniform since 1998 (the year I left the National Guard).  Its weird.  I wonder if I’m losing my blooming mind.

I don’t know what’s real and what isn’t anymore.  Many times I look at what few records I was able to obtain from the VA, trying desperately to remember things…the proper order of things.  I have no mementos from high school or my Army days, because I lost everything I had in storage when I moved from Jackson back to Hattiesburg, and what little I had brought with me I lost in a house fire a few years later.  The ONLY thing I have left is my flight jacket, and a picture I signed to my dad when I was in basic training.  I found it in a trunk of his belongings I retrieved from his ex-wife after he went to prison.  Everything else…lost.  When you have a hard time remembering things, losing little tangible pieces of your past hurts…a lot.

I sit here tonight, listening to my husband snore, the washer running, the cats playing in the kitchen…and THIS…what I can see and hear tonight…feels like the dream.  This “reality” feels like I’m dreaming and need to wake up and go back to my “real” life.  A life less pleasant in many ways, but also a life in which I can still run…still shoot…still fly every day…still be…ME.  I don’t know who I am anymore.

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Rough Weeks

So its been almost a month since I posted.  Wow.  I really need to get my head back into this blogging thing.  I feel better when I write.  It was just such a rough month that I didn’t want to blog, because I didn’t want it to be full of whines and complaints.

So…things are kinda settling down now hopefully.  I did get some good news in the past month…the VA sent me a letter denying my latest appeal and examination by two doctors…but then a few days later, I got a packet saying that I had in fact been approved for fibromyalgia…but they only raised my award from 10% to 20%.  They did backdate it farther, so that helped…I checked my bank account and the VA had sent me a nice chunk of change as a surprise!  Still, with fibro, they’re supposed to give me 100% disability…but they determined I’m still able to work and function because I walked into their doctors’ offices under my own steam.  Um.  Fibro doesn’t mean you’re completely incapacitated all the time.  It does mean its hard to keep a job however when every week you have 1-2 days minimum that you literally can not drag yourself out of bed or off the sofa because of the pain, the nausea, the lack of energy, etc.  So, I have to keep fighting.  Unfortunately, I only had 30 days from the date of the letter to appeal, and I’m 4 days past that date now.  I’m going to appeal anyway and hope they take it.

Its not that I’m afraid to work.  I actually enjoy working.  I’m not cut out to be the Suzy Homemaker type.  I adore my kids, and sure, I like to be able to sleep in when I’m not feeling good…but the simple fact of the matter is that I’m bipolar…in my case, I do better when I’m out of the house.  I do better when I have a job to focus on…when I’m bringing in an income, when I feel productive and useful.  Sitting at home, I don’t feel either of those things.  Its a vicious cycle.  I’ve worked steadily since I was 13…often two or three jobs at a time so I could make ends meet.  I don’t mind working.  I’ve also been a boss though…and even if I had an employee who gave 400% when they were at work, I did have to let people go if they called in sick too often…so I get it.  If you’re going to be a valued employee, you have to be there.  Period.  End of story.

So anyway…I took the money the VA gave me and bought new tires for Justin’s truck ($800!!!!) and paid a couple past due things…I considered using it to fix my teeth, which are in terrible shape from the latest cancer battle, but in the end, I decided to go slowly on the teeth.  My family hasn’t had a vacation together since right after Katrina…we went to Disney World in November 2005, and we went with my mom and stepdad, so that was more stressful than anything else LOL.  Jared will be gone off to college in a year…Katie in a year after that.  Bekah is still 9, so her ticket was less expensive if we went now.  So, with all that in mind, Justin and I decided to “blow” the remainder of the money and we went to Disney World with the kids for 6 days (3 in the parks, 2 to travel there and back, one to relax).  I don’t regret it.  We’re back to stressing over money now, but ya know, we would have been there soon anyway.  The time I got with my kids was priceless.  Sure, I was in a wheelchair the whole time.  Sure, I was too sick to really enjoy myself like I have in the past.  But I DID enjoy myself in other ways.  Watching the joy on Bekah’s face as she saw the things she’s dreamed about (she doesn’t remember the 2005 trip).  Watching Jared and Katie enjoy things in a new way.  Having a maid LOL.

I’ll post Disney trip pictures tomorrow if I can get them off the camera.  For now, I’m going to go thaw some meat to start supper, then lie back down on the sofa.  Today is a “bad” day for the fibro, but it’ll be better tomorrow.  Oh, and I gotta go find last night’s Survivor off the internet…apparently my recording cut off 10 minutes :p

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