Sunday, May 29, 2011

Day 338--What am I doing?

Yeah.  What am I doing to myself?

Last night was terrible.  I felt awful physically, and useless in a lot of ways.  I felt like a useless daughter, useless mother, useless person.  My physical pain was so immense that for the first time since really getting going on the Nucynta I felt as though I needed something stronger.  My entire right side was killing me, clenched into knots from my shoulder to my hip.  I wanted to have a slumber party with my daughter, but my husband had taken over the bed in our room.  He has a habit of sleeping diagonally on the bed, so there's no room for anyone else, and expects me to wake him and wait for him to move every time he does this.  It's one of many things that is grating on me about him right now.  Probably if everything else seemed to be going well I wouldn't feel this way.  But it isn't.  My life isn't going the way I want it to, and some of that is beyond my control, but some is very well IN my control.  I'm just not managing it well.

My mom bought me a date book about a month and a half ago.  I had been needing one.  I can't remember anything, and that's the God's honest truth.  Sometimes I look at people I know well and can't remember their names for a moment.  I've been told it's stress and chronic pain, and it probably is.  But here's the thing.  I lost the damn planner she got me.  Lost it.  I kept it in my purse and I damn well lost it.  I've also lost my prescription for flexeril, my muscle relaxant.  Genius.  My mom took pity on me and bought me a new planner.  I need to get it up to speed.

Last night I aired my dirty laundry for all to see.  I didn't go into tremendous detail about what happened to me at the lab, but I think I should.  One of my friends suggested I write a book about my time there, and publish it. I briefly considered that idea.  Actually , now I'm considering it again.  Not a bad one, actually.  I love to write and maybe someone would be willing to publish it.  I have to say i was overwhelmed last night and today with the number of people who jumped up and told me how I had affected their lives in a positive manner.  That's what i want to do.  I don't want to be a complete waste of space.  It's been hard on me to scale down and give up what I feel I can handle and do well.  In another year I'll be eligible for in state tuition and can go back to school if I so desire.  I can work on the doctorate if that's what I want.  Probably I could start in the spring.  But I don't know what I want to do.  I don't want to hurt.  I want to live on my own with my kids and my dog.  I go back and forth on the husband.

Last night I told people things I had sworn I would never tell.  That I would not go that way, I would take the high road, hold my head high and know I did the right thing.  But holding my head high got tiring, and it's the end of the school year at my old school, and I'm missing my families and my kids and my routine.  Maybe that's what's going on for me.  I would be starting summer school.  But I'm not.  I'm sitting here, writing, grabbing odd jobs here and there, babysitting and whatnot.  I finished my first semester at the community college and did a less than adequate job.  Not because I'm a less than adequate teacher, but because I'm sick.

I know the move home was the right thing to do.  For the last twenty years or so I've listened to God and let Him guide me to where I'm supposed to be.  Sometimes that's an easy step and sometimes it's a leap of faith.  I knew I needed to come back to VA.  What i didn't realize was how hard it was going to be to give up my life in Norman.  How much I would miss my friends, my house, my job.  And how I feel that, to a large extent, I was forced out of my job.  I could never work under the constraints my new boss had put me under.  I felt like I had gone from having a master's and doing quality work to someone from a junior college who answered phones.

My deepest, dearest passion is to be able to open my own school that resembles the school I was at.  A part time preschool program that I can build from the bottom up, creating quality experiences for children everywhere.  I also know though, that I'm sick, and that limits what I can do.  Sure I can babysit overnight like I did the other night (I was sick to my stomach but I survived it), and I can watch kids for a short while, but that's not what God has in store for me.  I don't know if His plans include public or private school.  I don't know if they include me working at all, except from home.  I'd love to get a job where i could write for a living.  But i would miss the chance to go into schools and childcare centers and make my mark as a resource person.  I'm very good at fixing problems.  You have a problem in your classroom?  I can help you fix it.  But I don't know how to charge for that, and I don't know how to get insurance.

Oh, how insurance wears me out.  I hate it horribly.  It's ridiculously expensive and holds me back from a lot of things.  I'm angry that I'm the one who's supplied insurance for my husband for so long.  I feel the weight of everyone riding on my back.

This post is rambling, rumbling, everywhere.  What I can't get out of my head is how much I hate this person.  How I hate her destruction of everything I held dear.  How she treated me illegally, not to mention immorally.  How she lied, deceived, and created a hostile environment for everyone.  I. Hate. Her.  And I have to figure out what to do so I can be at peace with that now.

No answers.  Just questions.

Saturday, May 28, 2011

Day 339--Pissed

For a year I've taken a higher road and not spoken ill of my old position or of the woman who I consider to have driven me out.  I'm personally tired of it.  I'm depressed and angry and hurting, and don't know what else to do.  Well, I know some of what I have to do--get some assistance with pain because I'm really a bitch when I'm hurting, like today.  But there are things I've been holding in from people that I wanted to know.  Yeah, you.  If your kid went to my school I want you to know.  If you worked with me I want you to know.  It's time for everyone to know.  So here it love letter to the person I despise the most.

Dear P,
Anger hardly describes my feelings toward you.  Within weeks of you coming into your new position you had criticized everything L and I had built, had constructed, had poured our hearts and souls into, and begun your changes.  There was no collaboration between us.  You weren't interested in that.  You were interested in making everything bend to you, how you felt things should go.  You changed the furniture in the classroom, despite the fact that you taught fifteen children and I taught thirty.  You belittled me, embarrassed me, and lied about me.  When I took FMLA, you gave me forty hours worth of work to get done in four hours a week.  You gave me assignments to work on at home when I was on FMLA and then refused to sign for the hours.  You called me a liar.  You impugned my character.

I hate to break it to you but your communication and respect level for parents sucks.  No parent needs me to tell them that--they already know--and some of them pulled their kids out.  You never accepted the blame.  You never took responsibility for your fuckup.  You blamed everything on me.  You were all too happy to do that, over and over.  You lied to our supervisor.  I can only say that I hope he's gotten a good look at what he hired.  You couldn't run that center successfully to save your life.  Want to know why you have no staff?  Because nobody with anything beyond a bachelor's would work with you, and even then, only students who don't have world experience would agree to such a thing.  You suck.

You took me, the Interim director who had the school running smoothly, bills being paid, classes fully loaded, and kicked me to the curb.  Did I mention I hate you?  I hated every minute with you.  You are a liar.  You created a situation where I could no longer happily work where I had been.  I went from being respected and trusted to being micromanaged like a teenager.  Again, you suck.  You took two thousand dollars in training money and spent it ALL on yourself, leaving me no money to be trained for the year.  And you wonder why I left?  I would have given up everything and gone to the Sahara if it meant getting away from you.  As I told my husband when I came home after our final meeting, "I don't care what we do but I will not work with that woman one more day than I have to."

I hate you.  I loathe you.  You robbed me blind and i cannot stand to stomach the thought of you.

And I hurt today.  Pain at a 7 or 8, and the nucynta isn't helping.

Friday, May 27, 2011

Day 340-Looking for a place for me

So last night I babysat for the first time in years.  Three sisters whose mom had duty (my guess is she's in the reserves).  Sweet family but here's the kicker--those kids are completely self-sufficient.  My only purpose was to order dinner and to make sure nobody broke in and accosted the children.  Those kids literally did everything themselves.  The youngest puts herself to bed at seven, the middle one between nine and ten, and the older one whenever she pleases.  They also get up on their own--at six a.m.  Oh, I did have to wake up the middle one.  Everyone else got up, dressed, ate breakfast, packed lunches, and saw themselves off to the bus.  In the words of the middle child, "We're alone a lot."

These kids have become self-sufficient out of necessity and it made me realize how much my kids could actually do if they had to.  But they don't, because I do it for them.  I'm not sure that's a bad thing, though.  I think if this single mom was able to spend more time with her kids, she would do more with them, but I don't know.

As I sat in their living room at two in the morning (I have a horrible time sleeping away from home), I found myself slipping into depressive thoughts.  Homesickness mixed with guilt and frustration, and wishing I could find the kind of job that I felt useful in.  It's been over a year since I've felt really useful.  There's a new childcare center opening in a nearby city and I'm trying to apply for the director position.  I also need to find out how to renew my teaching license.  I want to be in a classroom.  Despite my health, it's where I feel useful--in a good preschool with great teaching and learning going on.  If that means public school teaching, then so be it.  If it means running a center, that's good too.  Whatever it means, it is most important that I do it.

I went without pain medication for 24 hours yesterday, and despite  some pain and a lot of stomach upset I made it through.  And I made money that i considered to be extremely easy.

What I wish I could do, more than anything, is offer a preschool of my own.  I don't know if it would be successful, but I wish it could be.  I feel a burning in my soul to put those things into practice, to make it real and breathe life into it.  I guess you could say I'm searching for purpose.

This search happened to me once before, when I was in my twenties and had graduated with a psychology degree that wasn't worth the paper it was printed on.  That was when I began teaching in preschools and eventually ended up getting a master's degree in education.  What I need is becoming increasingly clear to me.  I used to believe I was the kind of person who could be happy in the trenches, never climbing out, and only making a difference there.  I'm starting to understand that is not the role I'm meant to play.  I can't help but believe that I am supposed to be leading, mentoring, teaching adults as well as children.  Training people, hiring people, teaching people how to work with children.  Passing on my passion.

Other than exhaustion today and a bit of stomach upset, I've been all right.  And that's good.

Wednesday, May 25, 2011

Day 342-Motivation

Or lack thereof.

I can't remember a time in my life where I haven't struggled with motivation.  Actually I take that back--there have been short periods of time where I have been extremely motivated because I was so engaged in whatever it was that I was completely focused.  Now, however, is not one of those times.

I'm guessing that feeling crappy feeds into that.  I'm also guessing that it may tie into not being cared for appropriately as a child.  I have a lot of trouble drawing the line between when I'm really sick and when I just don't feel well.  When I was a kid, my parents didn't consider you to be "sick" unless you were vomiting or had a fever.  As an early childhood educator, I'm very clear on the fact that a child can be sick even if they're not running a fever or vomiting.  Having people telling you that your reality isn't real can really fuck with your mind.

Today I'm not in horrendous pain.  I'm just tired, sore, and unmotivated.  I want to stay in bed.  I guess some people would call that depressed.  Maybe so.  I also think I tend to get depression confused with immaturity.  I think back to my life two years ago when things were very hard at home with my son, but I worked and did all the things I had always done.  Overwhelmed, yes, but not unmotivated.  I still loved to teach.

A lot of times i find myself in a situation where if I just get going--take my shower, put on my makeup, go to where I need to be--I actually am okay.  Tonight we have our mindfulness workshop.  This is a workshop that my daughter and I are doing together to learn stress reduction techniques.  I actually enjoyed this time last week, and afterward my daughter and I go to get a drink or a treat.  It's a special time for us together, and it's a total of two hours out of my day.  It's even in the evening, which is a time that I tend to be in a better place.  But for whatever reason I woke up today not wanting to do it.  I'd rather lay in bed working on my computer and watching television.  It's silly, really.  But I'm trying to figure out why I feel this way.  Why it's so difficult for me to do things that most people find easy.  What is missing in me that isn't for others?

I need to figure this out about myself because it's gotten in the way of a lot of things in my life.  I don't know if it's depression or a lack of motivation or what, but it ends up harming my relationships both professionally and personally.  I worry that when I look back at my life it will be a time full of regret.  Things that i wish I had made time for I will have missed.

I tend to feel overwhelmed very easily, and wonder if this contributes to my lack of motivation.  It doesn't take much for me to feel like my life is out of control.  I guess it's a lot to talk out in therapy.

Tuesday, May 24, 2011

Day 343

Well, it's technically day 343.  Four a.m.  I'm making out grocery lists and planning out my day since I'm awake and apparently not sleeping anytime soon.

I have therapy today.  Part of me wants to go and another part doesn't, would prefer to go do the grocery shopping and come home and hit the bed.  To skip the discussion that's supposed to be about me.

I've come to learn over the last few sessions that I'm very good at deflecting conversation away from me and back onto others subconsciously.  We'll start off talking about me and I'll draw a parallel to someone--one of my children, my husband, a friend--and voila! the conversation veers off of me.  Apparently I don't care to talk about myself too much.

I was just reading the ads for nannies and babysitters, because that's the direction I'm planning to go in this summer.  I'm looking to work maybe fifteen or twenty hours a week, leaving enough time for me to go to doctor's appointments and to take my kids to some fun places.  I live in a navy town, and so people out there have some whacky schedules that are no fault of their own.  But there's also lots of people who choose to work eighty or more hours a week, leaving their infants in the care of others.

As a woman who always wanted to conceive a child but never did, it infuriates me that some people are blessed with children (and sometimes many times over) and spend nearly no time with them.  I've known people like this personally and wondered how do they live this way?  How do they manage, day after day, to throw themselves into their work and away from their own babies?

I guess the part that I find most disturbing is needing childcare for thirteen hours a day and offering a childcare provider a whopping hundred dollars for that care.  A hundred bucks for sixty-five hours?  Are you kidding me?  What kind of care do you think you'll be getting at that price?  You're lucky if you get your baby's diaper changed.  Quality care costs money.  My master's degree didn't come for free, and neither do my services.

I am currently looking at a couple of different jobs and think they will work out one way or the other.  Granted, even charging ten bucks an hour for sitting, I'm not going to be bringing home gobs of money, but I will get to sleep in, have time to run errands or go to doctor visits, and care for myself.  But it's something, which is better than sitting around doing nothing.

It breaks my heart to see these pictures of mothers with their babies, knowing that the picture is a rarity because mom is working so many hours.  Regardless of whose choice it is, we really need to check our values in our country.  No child should spend more time with a caregiver than with a parent.  Ever.

Wednesday, May 18, 2011

Day 349--Perspectives

I got up early this morning, as I usually do when the kids are going to school.  Once they got off, I ran a couple of errands, then came back home and checked my email.  My course evaluations had come through, and I went to read them.

I only had a few students who actually completed them.  They seemed split about the kind of teacher I was--kind, caring, late, sick, absent.  Honestly, I couldn't argue with any of their scoring.  The only thing that irked me, as per usual, was one of the responses.

This fibro thing has kicked my ass.

I've never been one of those people who is so neurotic that she pushes through everything to a workaholic-like ending.  One of my good friends is like that and would work tirelessly, sixty to eighty hours a week.  My brother is also like that, working nearly twelve hour days six days a week.  He makes a good living but, in my opinion, doesn't have enough time to enjoy it.  Finding balance is hard, and it's something I have always struggled with.

One of my evaluations carried on and on about my absences this semester, going as far as to say that I cancelled literally half the classes this semester, which is a gross exaggeration.  The person went on to complain about getting to take a test home to do it instead of in class.  I had the class vote that day if they would like to take it home and did make the comment I had a migraine.  The student in question was practically jumping up and down with excitement at the opportunity.  I guess there was a change in perspective somewhere between finding out it could be a take home test and the end of the semester.

Having taught undergraduate courses for ten years now, I've come to expect the random irrelevant, thoughtless, or even cruel comment made.  Some people see the opportunity for anonymity and grab it like a brass ring, hanging on and sticking it to the instructor for all they're worth.  I know I've been guilty myself of doing that exact thing.  This particular student made it known in class, in front of her peers, how she felt about me and my teaching.  She remains anonymous to the college, but not to me.

Realistically and theoretically, work should be separate from personal issues.  I wish that could be the case for me.  I found myself during the last week of school having to bite my tongue with this particular student, holding back the information about why I had missed so much class.   I kept telling myself that the reason is irrelevant; I had to maintain professional integrity and not disclose personal information that would help my students to understand.  In the end, I know it was the right thing to do, although my reaction to this student's perspective is irritation and anger.  Did I want to miss that much?  Hell no.  It wasn't like I was bronzing myself at the beach.

Here's what I wanted to say to her:  I'm a human being, just like you.  Just like you, I have surprises that pop up in my life and yank me down.  This has been a huge one.  Trust me, I'd rather be teaching than hanging my head in a toilet or being unable to move due to pain.  I've been kind and understanding with you; I've made an effort to help you and explained material thoroughly; I've listened to your perspective on different issues in this course.  How is it that you aren't able to see mine?

I think perspectives, when people are aware, function as a type of filter of information.  We all have our own personal experiences that create a mesh with which we filter other people's beliefs and experiences through.  Some of us are, whether through temperament or practice, better able to recognize that we have a filter and to work with it.  Others can't.  My husband has this friend back home who was raised in a typical WASP-like environment.  The guy can't see or imagine any perspective past his own.  Everything he experiences gets stuck in his filter.  He can't see past his own perspective to recognize that others have valid arguments to bring to the table.  The only arguments that matter to him are his own.  This student reminds me of my husband's friend in the sense that there's a lack of recognition of a filter.  There's only recognition  of one person's needs and perspectives--the student's.

Being who I am makes it hard for me to let this go and be okay with it.  It was a first semester, I was incredibly sick, and it is what it is.  But hopefully I will be able to let some of it settle.  I know what I'm capable of and I know what I actually did.  And I know the semester is over.  I've learned from it and am adjusting to it.  And that's okay.

Tuesday, May 17, 2011

Day 350

Exhaustion was the name of the game this morning.  I stayed up too late last night out of restlessness and paid for it this morning.

Yesterday morning I was sleeping and the doorbell rang.  Color me shocked when I saw the school psychologist there.  He and I had met before during my son's IEP evaluation.  I invited him in.

Sometimes as a parent, you're caught completely offguard.  Yesterday was one of those days.  My son had been cutting and had threatened to kill himself.  Two girls at his school informed the administration, and when I didn't answer the phone, the school psychologist came over.

When my son was eight, I bared one of my greatest fears to his psychologist--that my son would become a cutter.  It's very common for children with attachment disorder to inflict harm upon themselves.  His psychologist had looked at me and gently said, "We will work hard and pray hard that he doesn't, but with his history, it's quite likely he will."

And all my fears were there yesterday, suddenly, in my face.  Dozens of cuts made by scissors, covering both arms up to the elbows.  As I watched him bawling, begging me not to send him to a hospital or residential facility, my heart broke.  I tried desperately to choke down my fear that he may make good on his threat of suicide one day.  That he could see how much I loved him and erase the pain of life.  That he could breathe, willingly and well with no pain.

As things calmed down yesterday, I was able to have several good, honest conversations with him.  He had been hurt by his girlfriend, who broke up with him on facebook.  He had been upset by something that had happened to his sister a few weeks before.  But what he said--the part that grabbed me and I couldn't let go--was, "I'm just tired of living in pain."

Yeah, I get you there.  Pain sucks.  Whether it's emotional or physical, it sucks big time and is a terrible way to live.  He has begun an antidepressant but it hasn't been long enough to take effect.  Pain can grip you, suck you dry, and toss you out on your ass.

So I made an appointment for him to see his therapist today, which he did, and we both agree that for now, he's okay.  Life as a teenager is hard, and emotions turn on a dime.

My own pain has been relatively minor today, or much more minor than I had expected.  I slept most of the morning and have had moderate pain in my shoulder, hip, and lower back.  I got a lot done today, at least for me.  Taking my son to his therapist, shuffling my dad around, and doing the grocery shopping was a full day for me.  I was able to manage without any medication until the late afternoon.

Pain rating for the day--4 to 5.

Sunday, May 15, 2011

Day 352...Lazy.

Pain today is about typical with the use of painkillers.  Aches in my shoulder and back, down my spine.

I've always been a procrastinator.  When I was a kid, my parents really hated that I was like that and would get after me regularly.  I procrastinated over everything--homework, chores, whatever I didn't want to do.  Sometimes I wonder if I'm a bit ADD because I do get distracted, have trouble finishing tasks and get overwhelmed easily when I'm not sure what to do.  I have trouble thinking about where to get started and how to tackle a new project sometimes.  And that anxiety often makes me procrastinate more.

Working with this illness, I have the feeling, is going to force me out of some of my procrastination.  I have to go to the doctors when required.  I have to take medication on time, and if I'm ever going to leave my house I have to be determined enough to make it happen.  Right now it's almost a tad too easy to just stay home.  To stay in bed and rest.  I'm sure my doctors would tell me that's the worst thing to do, but I almost feel defensive of it.  There was a day several weeks ago when I was in tremendous pain and had run out of painkillers.  This was prior to seeing the pain management doctor.  I thought the doctor I had seen the week before would renew my prescription, and after being told he would, the nurse called me back when it was too late to see anyone else and told me she had been mistaken.  I remember crying and asking her, "Do you know how this feels?  Do you know how much pain fibromyalgia can cause?" She was sympathetic, poor woman, and sat on the phone with me as I cried and expressed some extreme displeasure with the doctor.

I do believe that this illness is multifaceted, and one of the most important first steps I can take is getting pain under control.  However, it's not going to be as easy as taking a pill.  It's going to require gentle stretching, probably some tweaks to my diet, and being willing to follow directions that I don't necessarily like or want to do.  My rheumatologist, as irritated as I was with her at the time, called it well when I saw her last week:  I have to buy into the idea I can get better.  What she didn't say but I've started to realize is that I have to buy into it enough to be willing to turn control over to my doctors and follow their directions.

I'm kind of a snob in the sense that I think I'm pretty smart.  I honestly don't go around thinking I'm way smarter than Joe down the street, but I do have a tendency to think that because I know my body and live in it then I know it well enough to blow off what I deem as bad advice from a doctor.  I'm probably like one of those people who would get cancer and think if I ate mangoes for ten days straight the enzymes would kill off the cancer cells.  (I'm just making that up--I've never heard any kind of advice about that but I do like mangoes.)  Basically, sometimes I can be my own worst enemy.

Dealing with depression and anxiety makes a person irritable and extremely emotional.  Operating from a place of emotion is hardly ever a good idea when you need to make logical decisions about your healthcare.  I wish I could find a way to be less emotional about this condition and just make logical decisions.  My primary care physician, for example, needs to be replaced--I need to find a new one.  The one I have has refused to treat my pain, called in the wrong amount of medication that I take regularly, and most recently, when I called to ask for a new blood glucose meter and strips, she called in the strips but not the meter.  At this point I've almost come to accept her gaffes, as it's clear she's either extremely unorganized or incompetent.  I'm honestly not sure which applies, but it's not really necessary to find out.  Oh, she's also the one who insisted I come in for a referral for a ultrasound, then never made the referral. Life would be a lot easier if I switched doctors and was done with her, but I find myself so angry and frustrated sometimes I can't think or respond logically.

As I have more things I have to get done, I get more anxious and more overwhelmed and more afraid of being in pain, and that just freezes me in place.  I can't seem to move forward.

So maybe it's not laziness as much as feeling overwhelmed and fearful.  I've always been one to stick with what I know, and now this is going to push me forward to do new things.  I've also long felt that God was sending me lots of lessons about living in the moment, which I'm horrible at doing.  This may be a stronger form of the same embrace the moment now and enjoy it for what it is.

Saturday, May 14, 2011

Day 353 and Post 100!

Yesterday afternoon my daughter came home and pretty much dove into my bed.  She was asleep by five p.m. and slept until I woke her to move to her own bed around 2 a.m.  It's hard to sleep with a person who rolls and kicks regularly.

I slept well last night for the most part.  I'm supposed to be recording my dreams, although I do a poor job of it.  But last night I had a of those that moves to multiple locations and is extremely intricate.  I don't remember all of it, but I know I was with a group of people and we were driving down a "bridge", which was actually a dirt road that extended across the sound leading to the Outer Banks.  We were supposed to go into the water and get something out, but I didn't want to go.  I knew there were deadly animals, especially alligators, in the water and I didn't want to risk it.  Somehow we turned around and drove into the last city we lived in. After we turned around on the dirt road, I saw two alligators swimming together in the water but they were yellow, black, orange, and red. We had to drop something off in town.  Somehow we went through several apartments and ended up in one that again had an aquarium-type setup where we were supposed to put certain fish in the water.  All of the fish were puppets, and one kid was being rough with one of them.  I scolded him.  That's all I remember.

I have a lot of water dreams.  This one wasn't as scary as some, but all of them are frightening while I'm dreaming them.  In dream analysis, water often refers to the unconscious, and this dream made me wonder if part of me fears delving deeper into therapy.  There's so many representations in this dream.  The puppets are something I relate to my work, and I'm sure that's how they tie in.  The same with the alligators--and their coloring was bright and eye catching.

I've had water dreams for as long as I can remember.  They used to be much more violent--the water would be churning, flooding, involve tidal waves, that kind of thing.  My dream last night didn't involve those things.  The water was calm.  The last water dream I had involved calmer water too.  Another aspect that always occurs in these dreams is the involvement of large water animals--sharks, whales, squids, alligators.  A third component that is in almost every dream is that of a bridge or some kind of platform in the water.  I'm never hurt in these dreams but always feel scared.  Actually, there's a strong sense of dread and anxiety in the dreams.  I'm sure my therapist will love the opportunity to dissect every corner of this one!

As for pain today, I woke up with a milder bit of pain.  Probably on a scale of ten, around five.  That's the best I've felt in several days.

Friday, May 13, 2011

Day 354-OMFG

The irony of this post is that I had begun to write one a day or two ago that went on and on about how I felt better.  And for the most part I did.  I wasn't as achey or sore, and I think I even went out and did some things that needed to be done.

Looking back, I somehow got off my sleep schedule somewhere around Wednesday night.  I stayed up far too late--three a.m. I think--and got up around eight to move to my bed (I had been sleeping on the couch). I slept a lot yesterday, and then I ran out of my pain meds.  So last night was a bundle of messed up torture.  I couldn't sleep and I couldn't get comfortable.  My entire right side was clenched and painful.

I'm back on all my medications now but it's going to take some time to recover from that, I'm sure.  If you were to saw my body in half, I could function well with my left side.  Maybe.

It's funny because I'm learning how so many things are linked together with this illness.  Being off of the pain medication the doctor had prescribed let me know exactly how well it IS working.  I may still be in pain right now, but it's much less than I was in this morning before I took my medication.  There are several reasons this medication is not the one I would personally choose.  It's expensive and has several side effects, including hallucinations for people who are on antidepressants, like I am.  And I got to experience the joy of a five foot floating feather when I first started it.  The hallucination only lasted for a few seconds and I was fully aware that it was not real.  I'm hoping not to face that again though, because it's just a bit unsettling.

I was supposed to go to yoga today and there's no way I can do that.  Lesson number two:  grab life by the balls when you can.  Yesterday was my other yoga option and I should have gone for it, but I didn't. I thought I would try to wait for today, because my mom and I were going to go on Fridays together.  I forgot she wasn't going to be able to make it today though.  So when I can, I should make the most of the lower-pain days and times.

I have an appointment with pain management on Monday.  Several people have told me that I need to rank my pain for different days and different times of day.  Mornings are almost always the worst, with soreness, tenderness, and achiness.  The rest of the day varies.  Some days I ache all over, others it's more concentrated in one particular area, and days when I'm not aching, I seem to be exhausted all day.  I was actually able to cook dinner for my family on Monday or Wednesday, and I ran errands Wednesday night with my daughter and my mother.

I am hopeful that tomorrow will be a better day than today.  We can always go up.

Thursday, May 12, 2011

Day 355--Less Pain, More Exhaustion

Less pain!  What a wonderful thing.  I stayed up extra late last night (three a.m., I believe) and took some medication about an hour before I fell asleep.  I slept on the couch and woke up way too early, probably around seven.  It took me several minutes to get going enough to move into the bedroom and make it onto the bed.  And I slept.  I slept and I slept.  I'm surprised it wasn't three when I woke up because it certainly seemed as though it should be.  I'm still tired, too.

But I'm not in as much pain today.  I would rank the pain right now (in my back and shoulder) as a four or so.  Granted, I've taken my medication so it SHOULD be lower, but I don't usually feel like it's this manageable.

I am very excited because I have heard from two different families wanting to hire me to babysit short-term.  It's not a ton of money or any kind of huge job, but it's one I can do and I'm good at.  Hopefully it will go well and I will get both jobs.  Even though it's only a few hundred dollars, it's exactly what I need to be able to do to be successful--a LITTLE something.  That's awesome.

Tuesday, May 10, 2011

Day 357--The Word of the Day is...


I woke up, after sleeping nearly twelve hours, with pain on both sides of my neck.  Since then, it's spread across my shoulders and into my upper back.

I have a therapy appointment in an hour so, despite the temptation to call Dani, my therapist, and cancel for the day, I have forced myself not only to put on clothes but to put on a skirt.  And a top.  And to write this, to stay busy so I won't be tempted to cancel.

I really do need to see her.  She's one of the only people right now that I trust with my fibro, who I feel hears me.

After the rheumatology disaster yesterday, I had a long talk with my mother who had been at the appointment.  She felt the doctor was fair and matter of fact; I felt the doctor was a bitch who could give a shit less and blamed me for not feeling better.  This is one of the reasons I think it's critical to bring a second party to the doctor's office.  Not only do they hear things you don't, they can also give you another opinion on what happened.  As I said yesterday, I'm not rational right now.  I'm not in the mood to give people second chances or whatnot.  I'm in pain and it's incredibly frustrating to hear people say things about you that seem unfair.

Dani is the one person that I can go to without my mother and feel like I'm being heard.  I don't want to take my meds before I go because they make me sleepy and it's hard to concentrate.  I want to be able to pay attention to what's going on.  I want to hear what she has to say and answer her questions fully.  Being in pain makes that difficult, but being medicated makes it near impossible.  I rarely take medication before I see her.

Tuesday is the day that i normally see Dani and then go to the bar beneath my mom's work and enjoy a couple of drinks and maybe a cheese plate while I wait for my mother to finish her work.  Today I won't be able to do that because I'll be driving.  Don't drink and drive.  I believe strongly in that--both of my parents were in a drunk driving accident when I was a child and my father almost died--so I try to practice what I preach.  So unless my husband drops me off up there later, I won't be going.

It's ironically become an entertaining little habit of mine.  I enjoy it, and the alcohol does help the pain.  Obviously, it has a numbing effect, and since I don't take medication before seeing Dani, the alcohol tends to take the place of my painkillers on those days.  It's funny, because on some days, alcohol does a better job than the painkillers I've been prescribed.  And I enjoy my time with my drink and my cheese plate, and my conversation with the bartender, who has started to recognize me.  It's like "MY" time.  Nobody there to tell me I shouldn't be drinking or delving into why I do what I do.  Nobody there to remind me of my responsibilities or the pain I'm in.  I can be anonymous, unseen, and normal for an hour or so in the darkness of the restaurant and bar.  I like that.

I think there's an element of normalcy in getting to have a day away from the medications.  I recognize that alcohol in and of itself is a painkiller and has similar properties, especially the way that some people use it.  That may include me, how I use it, I'm not sure.  I don't drink to the point of stumbling out drunkenness.  I have two drinks with my cheese plate and then I'm done.  But being able to do that--have my two drinks--makes me feel normal, as though I'm one of thousands of people who stop off somewhere after work to have a drink with a friend or colleague before going home.  So rarely do I get to feel normal these days.  Nothing about my life feels normal anymore.  Walking the dogs, which I did the other night, was incredibly painful because they pull the leashes.  Trying to gain energy to take my children places is hard.  I slept twelve hours last night and could easily sleep three more right now.

Pain colors everything I do. It's been that way for as long as I can remember.  When I was a young child, my pain was emotional, and it's built upon itself for forty years.  It makes me think of the block structures my preschoolers sometimes build.  If my pain were a block structure, it would be incredibly intricate and strong; it would sway in the wind but never fall over.  And it would attach to my spine and spread outward of my body, reaching areas I didn't anticipate.  It would anchor in my neck and crawl upwards into my skull and outwards into my shoulders.  Some days it would spike downwards to grab onto my back and hips.  And if it wandered far enough, into my knees and down to my heels.

I suppose it's like living with another creature inside you; one that spreads itself across and against you, one that attempts to claim ownership of your body and mind.  Some days it nearly succeeds.  But some days it doesn't; it's forced to let go of its grip and to slither back into nothingness.  Those are the days I hope for.

But that day isn't today.

Monday, May 9, 2011

Day 358

Can anyone say suck?  And I'm not talking about a tiny little suck.  I'm talking about a major suck, like through one of those little red coffee-stirrer things when you drinking a super thick milkshake.

Suck IT, is what I should say.

I have come to the realization today that I am not rational, cooperative, or even probably stable right now.  But then again I'm not that crazy about the people supposedly helping me either.

People I consider helpful:  my mom, my daughter, on certain days my husband, some of my friends, and my therapist.  And the nice bartender girl who works at the bar under my mom's office.  She makes me up weird cocktails and is nice to talk with.

People I currently consider unhelpful:  every freaking doctor I have working on my case, the pilates people who busted up my back and shoulder, some days my husband (although not very often), my dad (who can't help himself), my son (again, can't help himself), and some of my friends who think tough love is a good approach to curing fibro.

I know I'm a crabby bitch these days.  I'm even bitchy to myself.  Bitch, bitch, bitch.  I'm good at it.  What's worse is I feel entitled.  I hurt.  I am always hurting somewhere on my body.  There is literally never a day or a moment that some part of me doesn't hurt.  It just hurts in different levels on different days.

I saw my rheumatologist today, and within five minutes I had crossed my arms and was done talking.  Fortunately my mother was with me so she was able to carry on a decent conversation with the woman.  The doctor referred to me as not "buying in" to the treatment she's giving me, and that I've had symptoms for twenty five years, so they're not going to go away overnight.


But it would help if one of these people who keeps telling me cymbalta would be helpful would say, oh, prescribe it.  It would be helpful if I didn't have to follow up on making appointments four hundred times and that I could just show up when they say so.

I've probably said it before, but I've considered voluntarily committing myself to a hospital for awhile.  I just don't trust that I'd get the care I would need.  And I'd be cut off from the people and things that ARE helping me--my family, my friends, blogging, writing, my therapist.  Law and Order Criminal Intent.

My rheumatologist is right in some aspects.  I do want to feel better.  I do want it to happen faster.  I am angry at the turtle speed people seem to be moving at.  And I do want medication that makes me feel better.  Honestly, there are some days I think the Nucynta helps some, but more that I don't feel a difference.  I go back to see the psychiatrist next week, and I'll be out of the medication way before then, so I guess I'll know whether it's working or not.

One of my friends talked about the importance of changing my attitude, and I thinks she's right.  It's hard, though, to have a positive outlook when you're in pain.  But I'll list three things here I'm thankful for and/or like.
1.  My kids and my family.  If it weren't for them, there wouldn't be any point.
2.  My dog.  Every day she makes me laugh or at the very least, smile.  She curls up with me, likes to play with her toys, and lives her life fully.  You can learn a lot from a dog.  I think there are books out there about it too.
3.  The garden behind our house.  It's a Japanese-style garden with a Pagoda in the middle of it.  It's very pretty and right off the river.  It makes a lovely place to walk and wander and just think.  I may try to do that one day.

So that makes three.  All I have in me today.  My back hurts and I'm so over the pain.  I may try to get in to see the pain management doctor sooner than when she has scheduled.

And that's all today, folks.

Sunday, May 8, 2011

My truck ran over me

Yesterday I was feeling better and was even inspired.  I taught my last class of the semester and really enjoyed my students' presentations.  I did the grocery shopping and even cooked chili for dinner.

I should have known it would come back to haunt me.  It always does.  This morning I woke up in extreme pain in my hips.  I don't think I've ever felt pain that intense in my hips.  It hurt to walk.  It even hurt to roll over or lay still.  I took my medication and went back to sleep.  When I woke up, the pain was a little less than before and I was grateful.

I was finally able to do some grading today, and the pain has come off and on, in waves, over my hips and my shoulders.  I've had reflux horribly this afternoon, and just took something to help with that.  I also ate a container of Chobani yogurt, which seems to settle just about any stomach upset I have.

I am becoming more aware of the effect certain foods have on my illness.  I've learned to keep greek yogurt around at all times.  If I have nausea, I eat the yogurt and rejoice in the fact that the nausea disappears.  It also helps with regularity (ahem) and I'm noticing now that it's helping with the acid refulx as well.  Many people choose to eat it with a small bit of honey.  I haven't been so brave--I get the fruit in the bottom kind and am happy.

About a month ago, I began a path to becoming a vegetarian.  Not vegan, mind you--I will still eat eggs and cheese and other dairy products.  Giving up yogurt at this point would be just ridiculous.  But a month ago I gave up beef, and I plan to give up pork before the end of the month.  I have vowed that I will allow myself one trip to Goden Corral for a bacon pigout before I give it up completely.  I do move cruncy, crispy bacon.

I meet with my rheumatologist tomorrow.  I'm not sure why, except so she can assess my pain and again refuse to treat it.

Well, I think I"m falling asleep now, so maybe I'll take a nap.  Sounds like the best idea I've had all day.

Saturday, May 7, 2011

Day 360--Keep on truckin'

Today was my last day teaching my adjunct college classes.  I had trouble sleeping last night and didn't go to bed until around 2 a.m.  Then I apparently slept through my alarm a few times, so when I finally heard it, I had about ten minutes to get ready.

Certain times of day seem to be worse for this illness.  First thing in the morning is almost always bad.  I'm either nauseated, have a headache, am aching, or a combination of the above.  Sometimes in the middle of the night I'll have IBS symptoms, but usually that happens more during the day.

The good part about teaching is that it keeps me busy doing something with my mind that isn't  physically painful, so a lot of times I forget about the pain for awhile, or it seems to lessen.  For that, I'm grateful.  I have been debating about applying for a assistant director position for a nonprofit center that works with children with disabilities and supports people with disabilities.  I am hoping that if I can get a job there they'll be understanding of my illness, since they employ people with disabilities.

After my class, I did some grocery shopping, then came home and took a nap.  I felt a lot better after my nap, although I was still having pain.  I have found the Nucynta the doctor prescribed to be helpful overall, although it's incredibly expensive and makes me sleepy.  I also don't think it is as effective on pain as vicodin was.  I'm fairly certain that when I go back to see her in a week, she will want me to continue with the Nucynta, and I'm not crazy about that idea.  Expense aside, it's not as effective and I have already had one hallucination on it.  It was minor and not particularly scary--just more disturbing than anything else. I was writing on my computer and looked up, and saw a large (five feet maybe?) feather about ten feet away, and then it disappeared.Like I said, not scary, but not desired either.

On Monday I see my rheumatologist.  Hopefully she will prescribe more muscle relaxants for me.  I have not found the patches (Flector) to be that successful because most of my pain can't be narrowed down to a 3x5 area.  I do find it helpful on days I have to work, when my shoulder is particularly painful.  The pain mgt doctor prescribed thermacare, and I've used it once when I was having tremendous pain in my shoulder.  That was helpful too.

I will be calling the psychiatrist this week to make an appointment to straighten out my meds.  I'm hoping he will try me on Cymbalta, which is proven to be effective not only for depression but for fibromyalgia as well.  My current antidepressant, Celexa, worked for a long time but eventually stopped being as effective as I think it should be.  I also am not happy with Klonopin for my anti-anxiety medication.  It does not work at all for me.  To me, it reacts as a placebo would.  I can't even tell a difference that I've taken it, and that's incredibly frustrating when you're in the middle of an anxiety attack.

I have tremendous problems with anxiety and probably always have; I just didn't know what it was.  I remember thinking as a child that I had lots of "butterflies" in my stomach.  I didn't understand that the feeling I had was anxiety and that I had far more of it than most people.  I do have occasional anxiety attacks, which I consider to be far different than dealing with plain anxiousness.  When I have an anxiety attack, I feel like I'm having a heart attack.  I sweat, shake, and even have trouble speaking.  About a week ago I had one and could barely get out the need for medication.  Fortunately, my mother was there and helped guide me through some deep breathing exercises.  Those were helpful in regaining some control, but the possibility it could return at any moment doesn't sit well with me.

I have wondered quite a bit what the rheumatologist wants with me on Monday.  I'm not anticipating a long visit.  She may test my vitamin D again, which I'm low in, and to be honest haven't taken it regularly.  I forget, since i only take it twice a week, and I'm sure she'll nail me for it.  I'll have to do better.

At least today has not been a very painful day, and I'm thankful for that.

Friday, May 6, 2011

Day 361

Yesterday I should have written but I was too busy crying and arguing with some friends of mine.  They all thought that because I've had unseemly thoughts I should lock myself in a psychiatric hospital.  I'm not about to do such a thing for several reasons.

First, I do not plan on killing myself.  I'll admit that I have thought about it.  I've also thought about running away to Disneyworld, moving back to my old town, becoming a rock star, running away with an online friend of mine, and becoming a buddhist follower.  Just because I have the thought doesn't mean I'm going to do it.

Second, having struggled with depression for most of my life (I was first diagnosed at age eleven), I am a firm believer that each person has the right to choose whether to continue to live today or end their life if they see fit.  There are some people who cannot bear the pain of their lives for whatever reason, and in certain situations it would be cruel to force them to continue to live when there is no end in sight to their pain (either physical or emotional).  I do not count myself in this category but I know and have known people in this category.  While I believe that some people do need to be hospitalized to become stable, I don't think that every person who has a suicidal thought fits this category.  I can just as easily imagine myself locked up for fantasizing I've run away with Detective Goren on Criminal Intent and we are now living a life of love and sex and baby making.  Or taking up residence in Disney's Animal Kingdom and visiting the parks for weeks until somebody finds me and kicks me out, or I get employed.

The thing that most hurt me was being accused of trying to manipulate people when I shared my feelings.  Look, people, sometimes people say things you don't want to hear.  Sometimes they say things that scare you or freak you out or even make you think, "eww, gross, really?".  Does mention of suicide always mean either danger or manipulation?  Or is it possible that, just like we have other fleeting thoughts and feelings, the thought or feeling of being suicidal might be fleeting too?

Taboo, for sure.  Painful, absolutely.  Do I regret bringing it up and being honest?  You bet I do.  There's a reason that people who commit suicide often do it in the dark, with no warning.  Because talking about the feelings behind it often send off the mark of a five alarm fire.  How terrible that a person have that thought!

If I had a dollar for every time I've thought about suicide I'd have...well, I'd have enough for that disney vacation, anyway.  But I also know my own limits, and I know my own values.  My children lost their birth parents at a very young age, and I will never willingly force them to go through a loss like that again.

Chronic pain is linked to a lot of things, including child abuse, depression, and anxiety.  I fit all three categories.  And when you hurt all over, day after day, you start to wonder why you should continue to hurt, or to live, since you can't contribute.  One of the hardest parts of this illness has been not being able to do the things I used to do with my kids.  That has been a hard loss, and one I regret regularly.  And yes, some days I wonder how useful I am to my children.  Writing helps me remember why I'm useful, and how I can make a difference.  The belief that perhaps someday, someone will be able to read this and find comfort that they aren't alone.

Today has been an exhausting day for me, and I'm not sure why.  I just know I've been incredibly tired all day.  I've been anxious and upset as well.  But tomorrow will bring a new day, a new time.  And maybe I'll feel better.  Maybe I won't...but I'll be around to find out.

Wednesday, May 4, 2011

Day 363

I'm counting backwards.

It just occurred to me that if anyone does indeed read this, they'll probably think it's strange that I would count backwards.  Why?  Because I'm counting off a year.  Counting down to day one, to see if this illness still has such a powerful grip on me after 365 days.

When I first started this blog, I was on FMLA for two reasons--one was to care for my son, and the other was to care for myself.  I was burned out and miserable and having an intensely difficult time at work.  I also wanted the opportunity to talk about a certain TV show which for now shall remain nameless (but I will say since they brought Goren and Eames back they both are better than ever).  But like most things, life changes.

My only rule with this blog is to write honestly.  I think by this time I've lost almost all of the five or so readers I had generated.  I mean honestly, who wans to read the rantings of a person in pain?

I see this as a way to document the complexities of this condition as well as the difficulties in treating it.

As I was talking with a friend yesterday, I started counting of the number of doctors, specialists, and other professionals I have to see to treat this illness.  First, there's my PCP, who's supposed to be managing it all but I'm not sure really knows her ass from her elbow.  My rheumatologist, who diagnosed me, is more helpful in general but doesn't really deal with any of it but the diagnosis.  My pain management doctor, who I ranted about yesterday in her lack of belief of narcotics, even when they're useful.  Then there's my therapist.  I have to give a shout out to her because I actually like her.  The hour I spend with her each week is probably the fastest hour of my week.  She wants me to keep a dream journal, which I haven't been doing, but I do wake up with weird, random songs in my head.  This morning's theme was "The Girl Is Mine" by Paul McCartney and Michael Jackson.  Keep in mind Michael Jackson, from my perspective, was a pervert, so even though I recognize he had an incredible musical gift I'm not overly pleased to be singing any song by him in my head.  Especially this one, which is like bubble gum pup music.  Blech.

Okay, back to treatments.  There's also a physical therapist, a massage therapist, ultrasound and x-ray technicians and phlebotomists (those are blood people--I, like many fibro patients, have low Vitamin D levels).  There's the restorative yoga teacher.  Oh, and a psychiatrist to mess with all my meds.

I don't know how many people that is but it sounds like a full time job to me, and feels like it too.  These days I'm overwhelmed at going to one appointment, never mind two or four.  I'm tired and I want to sleep.  My arms and shoulders hurt.  If it were up to me today, I'd be going back to sleep, but I have to get a couple things accomplished, so too bad for me.

Today seems to be one of exhaustion rather than so much pain, so it's a good day.  Days in which I can hardly stay awake are good days, because the pain seems to lessen.  I still have pain in my neck and shoulder lingering from yesterday, but overall, I'd really just like to take a nap.

Tuesday, May 3, 2011

It's 1:30 a.m and I'm...

writing in this blog.

Even though I wrote earlier today I felt the need to continue.  Writing has always been an outlet for me and I think I've got a lot to get out.

When I went to the pain management doctor yesterday, I became aware once I left the extent to which pain is clouding my memory.  I couldn't remember what drugs she had prescribed, nor how I was supposed to use them.  In fact, I was so distraught that I spend the entire ride back to my house screeching at my mother about how I hate doctors and they all suck.  I do remember that.

I still don't understand the purpose of this crazy medicine she prescribled.  Way too expensive amd much less effective.  I figure I'll give her another day before I call and tell her it's not working.

I went to see my therapist today.  She wanted to delve deep into my childhood, which I'm used to with therapists.  Sometimes I feel like I should just write a summary for them so that they can read it and know ahead of time what they're dealing with.  It became clear through our conversation that she believes  the very beginnings of this pain are linked to sexual abuse I suffered at the hands of a family friend when I was a child.  I'm well aware of the mind-body connection and how people who are abused as children are much more likely to suffer from chronic pain as adults.  Of course everything she asked me caused me to draw a parallel to my own children, or a story about my own children, or a worry about my own children.

When I first became a mother I was thrilled.  Don't get me wrong, I still am thrilled and proud of my kids.  But very few days pass that I don't wonder what it would be like to have my own child.  Would it be a roly-poly baby?  A happy one who melts me with a smile?  Or a colicky, cranky baby who can never be soothed?

Often these days I find myself to be that colicky, cranky person who can't be soothed, despite the efforts of my loved ones and friends.  I can imagine it's hard to know what to say.  You can only tell someone so many times that you hurt enough to consider suicide before they don't know how to respond to you.  Avoidance is the number one tactic.  Sometimes I wonder if I just disappeared how long I could be gone before anybody noticed.

I met with an old friend today for coffee, and we had a pleasant conversation.  She has always accepted me for whoever I was in the moment, which is probably one of the biggest reasons I love her.  You don't go through life finding many people willing to stick through shit like that.  Sometimes you think you have found one, but something happens and everything crumbles like a pile of cards.  Nothing hurts more than to think you've built some kind of shelter only to have it cave in at the first gust of wind.

I sometimes find it funny that I write on here.  I question the point of a blog, especially since nobody reads it and I could probably write Mary Had A Little Lamb in the middle of every sentence and nobody would know.  But I would know.  And I promised myself this woud be an honest place for me.  So it's raw, like the rest of me right now--raw and painful.  I counted up seven specialists today that I have to see, and I think I left at leasst three off that list.    The thought alone is exhausting.

So tI guess I'll wrap this up.  It's nearly two a.m. and I wasn't meant to stay up all night.   This is day 363, I guess but Il write that entry later.  Right now I'm just going to try to block out the pain, and go to sleep.  I guess we'll see.

364 Days

Yesterday I blogged about something I don't think I've hit on before--the pain of fibromyalgia.

I've decided I'm going to blog on this subject for one year, every day.  See what works and what doesn't.  See if I'm still sitting in the same place a year from now.

Today I work up with stiffness, soreness, and pain in my left shoulder and that side of my neck.  That's unusual for me, because usually my pain is on my right side.  By noon it had moved and the pain was being shared between both sides of my shoulders.  How nice of it to share.  @@

They are currently treating me with flexeril, a muscle relaxer, and the pain management specialist I went to yesterday started me on some new pain narcotic that starts with an N.  Nucynta or something.  All I know is it makes me feel foggy, dizzy, and tired but does nothing for the pain.  It's incredibly expensive.  I really don't understand why I can't just have Norco.  I get that it's an addictive drug, but honestly I'd rather deal with the addiction concerns than live in pain.

There are days, like yesterday, that the pain is so acute I can't get out of bed, or I cry all day.  Yesterday was a crying day.  I cried for six hours or more, and now I'm crying again.  It isn't that the pain in and of itself is so horrific.  It's the day in, day out of pain that never lets up, that robs you of your life, that keeps you from doing the things you used to love.

I'd compare the pain I have today to severe whiplash from an auto accident.  It's painful to turn my head in any direction, including to drive.  There are some days I have migraines--pain gripping the entire side of my face that won't let go.  But the worst is my shoulders.  They hurt all. the. time.  The pain is incredibly intense and I have only found two ways to improve it.  One is, of course, the narcotic vicodin, which does relieve my pain tremendously.  The other is massage, which removes it for a few hours before the muscles begin to spasm and contract again.  There have been times my shoulders have hurt so badly I have been unable to wear a bra, forcing me to stay inside in a tee shirt.

My lower back is known to give out and often aches if I'm on my feet too long or walking in the wrong kind of shoes or wearing the wrong kind of clothing, even.  Pain in my back is common, and probably at least once every six months to a year now my back goes completely out, meaning I cannot stand straight at all and am in horrific pain if I try to stand, period.

I used to be the kind of person who agreed that narcotics should hardly ever be used, and that lots of people overprescribed them and overused them.  I'm not a drug addict, do not use illegal drugs, nor do I smoke.  On the rare occasions that I drink, I generally stop after one or two.  However, the last several months have been life-altering for me in how I view these drugs.  When I do not have an effective pain reliever to make living more bearable, I am not above going to a bar and having a couple of drinks.  I've always heard it said that "alcohol masks the pain" and it does, just as vicodin does.  The fact of the matter is that while certain medical conditions do have cures, there is no cure for fibromyalgia.  I have begun treatment regimens but it's slow going and much harder to do when I'm in constant pain.

Finding doctors who are familiar with fibro and understand--REALLY understand--the depth of the pain is hard.  I frequently find myself thinking of ways to die on days when the pain drags on and on.  I don't think most people understand the frustration of that feeling, the desperation that one feels to just rid oneself of the pain.  Anything--even death--sounds better than continuing in a life that is painful and has stolen your body, your livelihood, even your mind.  There's a condition called "fibro fog" that is common for fibro patients.  Between the depression, anxiety, and pain, it's often difficult to think clearly. The exhaustion that goes along with the illness makes it hard as well.

I have, at least temporarily, lost my livelihood because of this illness.  I have lost time with my children as well as their respect and admiration.  I have lost huge parts of myself to an illness that nobody understands.  And I'm about to fall asleep writing.  It's 1:24 p.m., and I can't go another minute without sleep.  Damn this illness.  Damn it to hell.

Monday, May 2, 2011

Pain and Depression

They're inextricably linked, aren't they?

My pain is intensely horrific.  I bleed from the inside, where nobody sees, into my muscles and joints and tendons.  I bleed into my neck and my skull, into my shoulders and my back, and even into my knees.  All of the tender points, they hold toxic blood in me.

Nothing stops it, really.  There are days or hours or moments where the toxicity lessens, or laughter makes it lighter, but it never really goes away.  It flows through my eyes in the form of salty tears that fall and cover my skin.  The saltiness makes me think of Danielle and Sarah, and the kisses I would bestow upon their tiny brows when they were little; the salty taste of cystic fibrosis left on my lips, reminding me of their delicacy and strength.  Pictures of them now, nearly adults, documenting the delicacy of life, even among the strong.  In a moment it's snuffed out, like a candle.  I never believed that when I would cradle them in my arms.

My life hurts.  My kids, who I fail, my husband who long ago stopped being involved with me; my job, which challenges me to teach when I can hardly rise from my bed.  My parents, who insist there is value in the broken and bruised.

If I disappeared?

How would life change?

It would go on, the conversations continuing; another lecturer to teach what I used to; another woman to comfort my children and other friends to pick up wherever I left off.  I want to be alone.  Alone.  Away from all of you.  By myself, alone.

I hate myself.