Positive Reinforcement is Hard to Find

It's hard.
I haven't been posting, because I haven't been positive or happy. It's par for the course currently... I have a few good days, and the rest... Just sort of blend together and meld, and I don't know how time flies past so damn quickly. But everything mushes together, and days become weeks I've missed. Months I've missed.

It's depressing to think I've spent the past 14 months in this leather recliner. It's depressing to think about the amount of money spent on medications which take the edge off my pain most days, but never really makes it go away. It's depressing knowing I have to depend and rely on others for my survival. It's depressing to not have control of my body the way I want to. I'm not going to lie. Depression is a hard burden to carry. It's heavy, it's lingering, it's there. Looming like a shadow, the proverbial gray rain cloud that's been following me. And it sucks. I think of it very much like one of those Dementor things in Harry Potter- depression sucks the life, the happiness, the joy, the interest out of everything. It's a black hole that sucks everything into it, stretching out its tendrils to reach every possible corner of your mind in an attempt to overtake it and control it with insidious wickedness and thoughts that aren't mine. Not really, but somehow end up in my mind. Things I wouldn't otherwise think of- never giving it a second to enter my mind. But there it sits, it simmers, and I refuse to look it in the face. I don't want that ugliness, that desperation to ever surface. Let me make this clear- I'm not suicidal. I can't say I haven't had thoughts though. Nothing serious, nothing I'd follow through with or even attempt to act out... I'd hurt too many people if I left. Besides, with all the courage I hold- suicide is not an option I'd ever entertain seriously. Ever.

I've been fighting it. One hell of a fight indeed. I know and am aware I don't have the motivation to be up and about like I used to. Not being able to work has been a big hit to my ego, not to mention the social interactions I miss because of it. Good, bad, awful, indifferent- I don't care. One one hand, I miss interacting with people. Yet at the same time- I absolutely despise it. Most days I don't want to put my face on, I don't want to force the smile, pretend I'm alright. I'm not. People piss me off these days. I have absolutely no patience for the rude asshats I see out and about, and if someone acts like a moron I have no qualms about saying such. Most are shocked when I comment, and have no reaction because nobody dares say anything to anyone these days. I walk away while they look like dumb animals with mouths wide open ready to catch flies. I like the shock value. That almost makes it worth going out and trying to hide how disgusted with myself I am. I try to disguise it with my online alter-ego. It's easy to see days I'm not putting much effort into being happy.

It shows in the lack of blog posts. The lack of status updates. The lack of communicating with friends. The lack of me not picking up my phone when calls come in, not answering texts, not responding. I don't throw the towel in on days like that- I just procrastinate procrastinating. It can all be done later. It can wait. It doesn't have to be done right now. Why bother? What's the difference? Nobody cares. Those are my thoughts.

Positive Thinking

I'm working on it.
The Happiness Project, as my friend Ber has introduced it... An ongoing attempt to make each day better than the last. To see myself differently than I do now. How is that? Well... I typically don't talk about myself in terms of feelings. Sure, I tell you how my body feels day to day, many of you know that much at least. But as for mentally? I kind of keep that buried and hidden as best I can, for fear that someone will see just how broken I am. Or at least, how broken I perceive myself to be.

I'm writing this early today, before I have time to really think and mull over what I should exclude, in terms of writing a sanitized post. I don't want it to be fluff. I want it to be raw, bare, and exactly as it's coming out of my brain at the moment. The meds have kicked in, and I'm fuzzy... But determined to get at least something positive out today.

I'm noticing things I do, and how they're not constructive to me as who I am.
I don't take compliments very well. I either brush them off, or flat out deny it. Why do I do this? I'm honestly not really sure. Maybe it's because I feel like I'm vain if I agree I'm beautiful. I simply say I'm pretty. I feel like someone is not really being truthful when they tell me I'm gorgeous. Again, I only think I'm pretty. I'm not skinny, I'm no longer considered "fat". I could stand to lose more weight- but for right now, I've lost 70lbs. I'm considerably lighter than I was last year. That's a big step for me, especially considering I don't get much physical activity into my schedule- and no, swiping on makeup does not count as much as I'd like it to.

My teeth. I'm so self conscious of my teeth. They look stained and yellow to me, yet friends say I should smile more often. I have a beautiful smile. My response to that is simply "It's a work in progress." Yes, I have braces. Yes, my missing tooth up front is making its way down to where it belongs. It's a process. I'm so self conscious of that gap it's not even funny. So when you see me smile close-mouthed, or turning my head so you see the left side of my face... That is why. I don't want you to see that gaping hole.

At my breastbone, I have an awful dip. Most girls have very nice cleavage- boobs are smooth where they emerge from the ribcage. Mine? Nope, I've got a weird one. Not only are my boobs big, but instead of looking normal (take a look at someone like Christina Ricci, or Heidi Klum) and you'll notice they have a beautiful rib cage and a nice "v" (for lack of a better description, since none is coming to mind) where their breasts kind of sit at the middle there. I have an awful gap, and I could only wish mine were as perky as theirs. And heck- look how many kids Heidi's had, and hers still look perfect. Ok, ok, I'll admit. She's most likely had plastic surgery- and if not, great. But there's still a whole lot of airbrushing going on. I'm insecure about it. I don't like it. Neither of my sisters has it. Just me.

I could point out a whole flurry of flaws I see within myself- I hate the bags under my eyes. My fingers aren't long and graceful looking. My right foot looks awful. My left knee has asphalt still in there from a rollerblade crash 10 years ago. I look awful without makeup. My hips are too big, my butt is too jiggly, my thighs are huge, my belly is smaller but still not ideal, I don't like the fat lumps my bra makes when it slides to an incorrect position. I complain, I'm bitchy, ornery, completely unmotivated, a wicked procrastinator and really don't want help even if I could use it. I'm too proud to ask, and usually shoo people away that do try to help. In my head, the emotional abuse I let assault me could go on for days, weeks. Months even. There really isn't much about me that I like right now. I suppose that's because I've allowed myself to get into this mindset of negativity, and with a list like that I could go on and on.

I'm insecure. I'm a bit lost at the moment. But I'm finding my way through each day, out of bed each morning, and sometimes even getting out of the house. I never intended on becoming a recluse, hermit, but I have.

I'm realizing though, I'm not as bad as I think I am. I am my own toughest critic, and it's hard to look in the mirror each day and will myself to make it better than yesterday. I'm determined to do it.

I'm worth more than I give myself credit for. I often tell this to my friends, and even strangers online who have become friends, yet I don't take my own advice. I suppose that makes me a bit of a hypocrite- and it's something that is going to stop.

I started to change yesterday. Today I will continue. And tomorrow will be the same.
I will take something I don't like about myself, and learn to love and accept it for who I am, because without it... I would not be me.

Unhappiness and General Loathing

It's why I haven't posted lately. I haven't found much inspiration to write, nevermind play with makeup. It's been months since I've done a tutorial, and I only do my makeup when I absolutely have to go out. I love receiving it. I love the anticipation of getting a package in the mail. I love opening it up, looking at it in my hands... And then, for some reason, the spark goes out.

Like a puff of smoke, that excitement is gone... Poof.

I'm finding it very hard, day to day, to get up and do something. Anything. You know this, because I've shared it before. I've become far more withdrawn than I'd like to be, in an effort to keep most of you blind to the fact that I'm in pain nearly constantly. I think the only time I'm not is right after nerve blocks are done- when the majority of the pain lessens, and when I take my night medications which knock me out and literally put me into a deep sleep. It's then I rest. The drawback? I no longer dream.

I miss my dreams. Colorful, vibrant, sometimes adventures I have. They've been my escape from the boring, repetitive days I often have. No more, not when I have to medicate and put myself out. I've been fighting insomnia for some time now. Val is the medication at night, and if I don't take it... I don't sleep. I'll literally lay in bed, staring at my ceiling, thoughts in my head going a million miles a minute and not making sense... But not quieting so I can rest. I just let my body lie there. The sounds are loud, I don't sleep without the aid of the medication. I don't like it. I used to be able to fall asleep at the drop of a hat. I used to be able to move when I slept- now when I do, it wakes me.... Painfully. Sometimes I crack, sometimes I pop, sometimes it feels like I have someone standing at my shoulders, another at my feet, and they're pulling an elastic band that starts on my right second and third toe... Tightening up the bottom of my foot, up the back of my heel, up my calf, thigh, right butt cheek, and finally my hip and back area where the spasm still resides. On especially bad nights, it goes as far as my shoulder blade. Chronic pain. The spasm still has not let loose, at all. Same one, over a year now. It's frustrating.

I know I'll get better, but sometimes I wonder. Why is it taking so long already?

A recent episode really troubles me. I was late to my doctor appointment, and the Cow at the front reception desk turned me away. Sat there, argued with me I was late- when I was not. I explained to her that my doctor gave explicit instructions to get to him as soon as possible when I feel something off in my back, or the spasm starts to worsen and I have more pain. It's what I did in this case. The time it took to explain this to her basically used up my "appointment time". She told me I was welcome to sit in the waiting room on the off chance that at some point that afternoon I'd be able to see him. I showed her my cane, explained I've started falling again, and I can't sit in anything upright for any period of time. It has to be a recliner otherwise my back starts to protest even more. She had no compassion, no sympathy, empathy, or anything. Just said so what, if you don't want to wait you don't have to. I had to reschedule, and did such finally giving her back the rude attitude she was spitting at me with. I went in on a Wednesday, she scheduled me for Monday. Apparently there were no other appointments which were available- which was a lie, but that's beside the point. When I asked her for medication samples that I needed, so I don't get worse, she sat there, rolled her eyes and told me to ask my doctor when I came in on Monday.

Let's make a deal...

Let's Make A Deal by Diane Blue
 
You forgive me for liking you too much,
And I'll forgive you for not liking me enough.

You forgive me for missing you so,
And I'll forgive you for being so cold.

You forgive me for the loud racing of my heart,
And I'll forgive you for not hearing it.

You forgive me for playing your games,
And I'll forgive you for toying with my emotions.

You forgive me for finding you so attractive,
And I'll forgive you for not noticing.

You forgive me for raising you up so high,
And I'll forgive you for bringing me down so low.

You forgive me for wanting to be with you,
And I'll forgive you for avoiding me.

You forgive me for being so pathetic,
And I'll forgive you for taking advantage of it.

You forgive me for not being able to let go,
And I'll forgive you for never having latched on.

You forgive me for having hopes and dreams,
And I'll forgive you for crushing them.

Forgiveness brings inner peace.
Do we have a deal?

***

I loved him.

I lost him.

I've vowed to never, ever let it happen again.
I won't be hurt.
I won't be vulnerable.
I won't feel, and it's alright.
I'm ok with it.
I'll laugh again.
I'll like again.
I don't know if I'll ever love again.
I'm not holding my breath, and remains to be seen.
It can't happen if I don't let it.

Restarting the Project

I started, but didn't complete the photographs I had planned on taking. I suppose I have no one to blame but myself, however in my defense... Feeling out of it, generally shitty and having to take and edit photos on top of dealing with the Holidays.... My mind goes elsewhere, as in hibernation, and I slacked off. I didn't post a photo a day like I was going to.

So here's the project for this year. Starting the first of February, I will post for this project again. I'm officially calling it the 52 week project... But if I can somehow juggle everything, and get a photo a day done... Than great... I will do such. The biggest motivators for me are putting me into something I know I have to get done. This will be one of those items.

I'm not sure where I'm going next with this disability battle... I have a feeling I may be taking action against both the disability company that has now twice denied me benefits, and the doctor who overdosed me on some seriously bad medication without a second thought. Indeed, this is the same doctor who claimed "Nothing is wrong" with me. Really sir, you're telling me the picture below tells you... There's nothing wrong with me?

Let me tell you something. Just because an injury doesn't present itself immediately after trauma, doesn't mean there isn't anything there or wrong. In some cases, it can take quite a long time for a problem to present itself... As it's done with me.

Just because you have a degree from some bullshit medical school, and the fact that you most likely kissed ass during your residency at Mass General doesn't mean you know what my body is feeling and telling me based upon one consultation. My biggest question is if you thought nothing was wrong, why was I put on a seizure controlling and pain management medication- on a dose that would cause damage to an adult?  Personally, asshole, I think it's because you get kickbacks from insurance and disability companies to give false information so the claims are denied.

Luckily, I believe in Karma. And trust me, what goes around will come around.

And you'll face what you've done to not only me, but how ever many other patients you've left dangling in the breeze.

As for the disability company which will remain nameless for the time being... I should have trusted the opinions and facts left in countless forums online absolutely bashing you for the careless, inconsiderate and cold way you treat us disabled people.

That's enough of a rant for now.

Oh, and on a funny side note. I was watching TV late one night last week, and my Ma and I happened to catch an episode of Judge Joe Brown. One of the cases involved a woman who was not only white trash, but was on full disability. She didn't appear to have anything wrong- there was no outward signs of an evident disability. When questioned what she had received full coverage for.... I hit the roof.

She's dyslexic.

I can see how it might be a reading, or speech, problem she may have. But her temper got the best of her, and she was slinging words around like the best of 'em. Luckily the Judge shut her up... But really?

I have a four inch thick file documenting problems I've had with my back for the past 5 years, and the additional mountain of forms my Doctor has been kind enough to fill out. It's been determined that the crash I was in back in March of 2007 hastened the genetic disposition I have to Arthritis and Degenerative Disc Disease in the lumbar area of my back. It's also been noted that I have Failed Back Syndrome- even though I have not had surgery, it can still be diagnosed- and it's the reason I'm in the state I am now.

You try walking around, and feeling your spine slip and slide out of place.

You feel what it's like to have one of the vertebrae "pop", and make an audible sound.

You take an hour in the morning to stretch before getting out of bed.

You deal with the medications, the paperwork, the bullshit red tape.

I'll tell you what though.... You picked the wrong person to make "go away".

I'm not going to do it. I haven't thus far, and I'm sure not going to start now.

Can't Touch, Disgusted

If I could just crawl into a hole, and hibernate for a few months, then come out completely healed... I would do it in a heartbeat. The travel we had this past weekend was rough- spending at least 13 hours total riding while we had family things to deal with. It was a surprise birthday party for my Dad's cousin, and it was pretty great to see relatives I haven't seen for a long time... And to be reintroduced to those whom I didn't remember- yes, it's been that long. All in all, it was wonderful to see everyone again. The food was great, the company was so much fun- and we need to do it more often.

On to the issues at hand, however, and where I go from here regarding my back injury. I had another appointment earlier this morning with my Doctor to discuss paperwork and where we go from here concerning my denied disability benefits. Needless to say- he was disgusted with what we discussed and had shown him. Instead of having Dr. C being the one they collected information from, they instead latched on to M as if he were the "be-all end-all" doctor in my bubble for a diagnosis. Countless times I had to tell the company handling my claim that M wasn't my doctor, was not treating me, and was simply a consultant to rule out any neurological problems. Well- he not only ruled it out... He made some comments that were completely off base, and others that were flat out lies- but which the claim handlers jumped on board that and said "See! Nothing is wrong!"......

Forgotten amongst all of this is the fact that M was only consulted with and seen for neurological purposes- problems that may stem inside this noggin of mine. There are none, which I'm happy to report. However- he offered many of his personal observations and opinions as fact- which doctors are not supposed to do. Based upon this bogus information, even though it's strictly against policy of the claims department for accepting opinions as fact, they did indeed deny my claim. They're banking on me giving up, getting so frustrated at the run around, get more information, need one more paper, gotta have this too- will make me throw up my hands, scream in frustration and say "I give up.". Well, folks.... I do not feel well. It's difficult for me to sit comfortably, walk well, sleep soundly, and look healthy. But I will not give up. It's not in me, the fabric of the person I've been made into, to simply give up. No.

I fight- for what I need, for what I want. There are few exceptions I simply drop it and walk away- but those are more complicated, and not part of this affliction. This back problem will not last forever. Giving up is not an option I recognize. So I will file the papers, I'll complete the appeal. I'll continue to get treatment from my Doctor C who knows this condition- and has no doubt that it's severe. He couldn't touch me today- the spasm is back so bad, I was tightening up involuntarily as he was trying to feel where my bones were. Of course, they out of place. But with the spasm still holding- he can't do much. He couldn't move me to get them back into place- so another shot in my bum, anti-inflammatory and steroid to bring down swelling, next week we'll try again. Meanwhile I'm back home, in my recliner, dopey because of the Valium, and uncomfortable because I can feel where my bones are out and it hurts. These dang ligaments need to heal.

Savella is the new medication I've been on for about 3 weeks. It's significantly helped me with the pain, better than the overdosed Neurontin thanks to M. I'm not as foggy and sluggish, though I'm still finding myself antisocial. My new goal over the next few days is to get back in touch with everyone I've not been talking to. According to Dr C, we're finally making progress- even though he couldn't fix me today. It's slow- and it's painful- but it's forward moving. He was disgusted by some of the comments of the report from M, and in order to get the claim re-evaluated for me, he's going to write a very detailed letter on my behalf. I'm also doing one of my own, of course with help from my parents because I'm not exactly Little Miss Understandable lately... I can type these mundane words out, since it's fairly simple... But to be detailed, pick apart a report, and ask questions that need to be answered with specifics... I'm not up to task to do that alone yet. My mind just is boggled trying to juggle what needs to get done. Together, it will be done though.

I feel bad for losing contact with so many people- but chronic, debilitating pain is no walk in the park. You may think it's fun to be able to sit home all day, with nothing to do but look out a window, poke around online, play with pets. It's boring. It's hermity. I thought for the longest time I just wanted to be left alone to my own devices- I don't need anyone but me. How wrong I was. I miss social interactions, but considering the fact that I still can't drive kind of puts a damper on things for me. I have to rely on other people either picking me up, or taking along one of my parents with me for a short jaunt. I'm not a fan of potholes or bumps in the road- it kinda hurts. So... My butt stays parked in the recliner, usually a blanket, a cup of tea and one of water, and this computer on my lap. I don't have all the time in the world to be calling people, talking. It just takes so much energy out of me- nevermind actually going out. It sucks. The worst part? I catnap on and off most of the day. Now this new medication keeps me a bit more lucid- but still... The other ones I'm on still make me sleepy. I forget things. More like... Everything. Unless I write it down, chances are I'll forget. So even if I do say "Hey, I need to call so-and-so later...", typically I'll fall asleep for a while, and wake up and do something else. By the time I go to bed, I remember that I forgot to call... And forget the next day too. It's awful. I need a sticky pad surgically attached to my arm or something. For now, I need to sign off and take a nap... The Valium really takes all the energy out of me I have. I'll be back later.

Oot and aboot

There's a family thing this weekend we're going to, and I'm attending since I still shouldn't be left alone. This means 4 hour car ride later this afternoon, well- pickup truck ride, and then sleeping in a bed that's not memory foam. Yes- my MF mattress so far has helped me eons. I love my bed. It's comfortable for me, like slipping into a cloud and sleeping. I know, I know, clouds are just fog masses way up in the atmosphere... But I'm talking metaphorically. I'll never ever go back to a regular mattress.

The picture project I've started will be on hold for a few days. I did take pictures the past few, and will take more this weekend for it. Depending on when we're getting back, I'll have resumed my daily posting of the pix. I'll combine them again into one blog post, so they're not all "inundated" in the news feed. I'm having trouble finding inspiration the past few weeks- I've had absolutely no motivation, interest, or artistic feeling lately. This isn't normal- since those of you that are around me often know that I've usually got a project or three going at the same time. Jewelry, photos, scrapbooking, etc. I just look at my stuff and think "No, not right now. Maybe later today." Then we get to later, and its "I'll just work on it tomorrow." When tomorrow comes, I do the same thing over. It's frustrating. I want to work on it in a way, but then again... I don't want to touch anything. I can't be bothered. I'm taking some things with me this weekend, since there's not much to do down in the other house... And I'll just be sitting around. Bringing a blanket I need to finish crocheting, and my jewelry box and goodies. I have to remember to bring the hammer because I've run out of headpins- but I have sterling wire I can fashion into ear wires.... The only problem is that beads need a "stopper" so they won't fly off the wire. Sooo, hammer flattens the end, and I go about happily beading. Actually, now that I'm talking about it... I want to work on my jewelry.

I still can't drive, so I go where I'm taken more or less. Since my parents made the emergency trip to pick me up, I haven't been behind any wheel since April 16th. I still hop in and take drives to get to Dr. appointments, or to go fill my prescriptions, but that's about it. Sometimes if my parents are running a quick errand, I'll go along for the ride... But I don't stay out long. I just don't have the energy- and speed bumps hurt. So do potholes. So at least the upside to the drive down south is that we'll be on the highway- and it's pretty flat. Won't have to deal with bumps of that sort. The medications I'm still on, even though the major one being chucked off my "diet", make me just loopy enough I don't trust myself to be able to react to traffic situations. I miss driving- but there will be plenty of time to do more of it later. Besides... I need to get out. Dr said so. I'm just nervous, I don't want to re-injure myself. I've been doing what I've been told- so I should be alright. This ligament injury thing is going to take a long time to heal- and we're not sure if it will do it on its own, or if my body needs help. Those are options to discuss in the near future. I'm being as optimistic as I can- so long as I don't fall down hard and land on my butt, I shouldn't be re-injuring things in there. I'm thinking positive.


The past couple days I've spent organizing my clothing. Why? Well, all the ones I was planning to either yard sale or donate (if they didn't sell) because they were wayyyy too small for me when I got home... Now fit me. I've lost, according to my scale, 45 lbs since coming home in April. I don't quite feel "skinny", and I know the number on the scale would classify me as "grossly obese"- but I don't follow numbers. It matters to me how I feel about my body, not the digits on the scale or on the tags of my clothes. My favorite pair of jeans which make me a sparklebutt (because of the rhinestones) constantly fall off my hips- so sadly, even though they're my favorite pair, I think I need to be rid of them. Actually- on second thought, not gonna happen. Maybe someday I'll need a few items that are bigger than my current size. I've already determined that I'm meant to be a curvy girl with some extra weight here and there. I'm not going to be petite like ballerinas- and thankfully so, because I kinda like having boobs and a butt. I don't want to look like a pre-pubescent boy thanks. Sure- I can't exactly wear the slinky clothes like some skinny gals do... But I could get away with some pretty sexy looks that they can't pull off either. Well- theoretically. I'm a jeans, t-shirt and barefoot kind of girl these days. Sweatpants, tank tops, and sweatshirts too. But occasionally I'll slip on a sundress or something a little dressier- just to remind myself that I'm still me. I can still dress up for myself. Besides, what girl doesn't immediately feel better after getting primped for no reason? I'm one of 'em. I am, however, going to come up with an exercize program soon. Once my back is healed enough so that I can get to doing some sort of strength training, it's my plan to strengthen my core so that I don't have these problems ever again. I've decided it's either yoga or pilates- perhaps both. I don't plan on packing the weight I've already lost back on- and I'm still going to lose more. I'm not quite where I want to be- but getting there. I've already made significant progress- so anything after that is sheer bonus. I guess in a way, it's my revenge body. HAHAHA... Have you heard that term used yet? Well yeah... This beautiful thing is mine. Look but can't touch. I like it.


I rambled today. It was meant to be just a quick blurb... But meh. Whatever. I like to talk sometimes, I know I rant... But I think it's because I don't get out much. And I haven't really seen many of my friends lately. I've definitely been anti-social. Thank you for those who understand this really isn't me- in time, though, I'll be back. Rip-roaring and ready to go... I have many adventures I want to tackle, and this back of mine isn't going to give me any problems once I get better. I'm determined it won't. So when I start rambling- it's just my way of venting. I don't exactly like being a hermit, having these strange medicated thoughts running through my head, and forgetting things that are important and remembering those that aren't. It's odd. I'm holding on to the fact that this will not last forever. I'll be back to my old self soon- and when that happens... I want to go exploring. I'm not going to sit around any more. I hate being confined, caged like a bird. My physical disability necessitates I be quiet, stay off my feet, be careful. I've been doing it for 6 months already. Enough is enough... When I'm finally able... I'm spreading my wings and taking off.


Those of you that want to come along on the adventures are more than welcome. I'll extend invites. I plan on taking lots of weekend trips.

Hollow Rabbit and Lies

It's like I'm stuck inside a shell. Like one of those chocolate rabbits you get for Easter... You take a bite and it crumbles into little shards below where your teeth bit into it. Some make it to your mouth, where intended... And little shards you try and catch with your hands as they fall. I don't feel like a chocolate rabbit. I feel like I'm empty.

I do mundane things.

I'm bored and not interested in many of my hobbies. I sit down, start to work, and quickly frustrated- it goes right back in the box or wherever I'm storing it. It sucks. I wish I had the creative energy I once did. In time- it will be back.

In a nutshell, the new medication my trusted and wonderful Dr. C put me on seems to be helping. Pain wise, I'm still having it, but not as pronounced. Today's a different story though- since it's raining... I woke up in knots, and just taking it as easy as I can. A day at a time.

I'm pretty upset, as I found out yesterday the "neurosurgeon" that I had consulted with, and only saw twice, wrote up a completely bogus report- which in turn has cost me my short term benefits. (don't worry, I plan to appeal this decision) It insinuates that I'm lying about my back problem, whining about an injury, mentally stable and coherent (even though I'm heavily medicated and sedated to battle the amount of pain I'm currently in), completely capable to carry out all my work duties (mind you, driving to work is a requirement.... I haven't been behind the wheel of my vehicle since April when my parents emergency-picked me up and whisked me home), walk around holding on to Mom and Dad for "emotional, not physical need", and that I have nothing wrong. Nothing wrong. Really? That's great in a way- because this doctor was a consultation only, another opinion to rule out any neurological problems I may have. So if it's not neurological, that's the good news... And I no longer need to consult with him. However- the company took his one "sound byte" of "nothing wrong" as the basis to deny my claim- even though this "doctor" was not the one treating me long term. Despite all the other numerous, documented and supporting evidence from my Dr. C that there is a severe problem with my back, and  the delayed diagnosis was tough because he literally couldn't touch me. Oh, did I also mention that M lied and said I "refused treatment"? Oh yes he did. He wanted an MRI of my head, and it couldn't be done because of my braces. He sat with me, face to face, and  asked how soon they were supposed to come off. I said about a year, and I would prefer to not remove them because it's painful, and also close to 1k to do. I candidly explained I don't have that kind of money sitting around, waiting for me to spend, and I'm also unable to work because of the medication, and needed to come home for proper care. He sat there, pondered for a moment, then said it was ok- there are other avenues we can take. However, in his report it was recorded that I denied his treatment and refused to do what he asked, so a diagnosis wasn't available. Seriously?!

Nothing wrong at all though? That's funny... Because my regular Dr. C is strongly disagreeing about that. I've since fired M's ass from treating me. I want nothing further to do with him, his office, or any associates of his. Among more lies, apparently I'm able to swim efficiently and without problems. Let me state for the record- I've been to the river a grand total of 2 times this summer. One, I waded into the water up to my waist, and lo and behold my leg once again gave out while I was standing there. However, since I was in water, I tipped over, floated and was able to regain my footing using my left foot- since I couldn't feel my right. I stayed there until I had feeling returned, and then went back to shore and dried off. The other time involved me floating in a raft for a short distance, pulled by my sister most of the time, and I was seated the entire time other than to get in and out of it. Now how did this doctor come to his conclusion that I was able to swim with wonderful mobility?? He saw the rash I had on my hands- asked about it. I said it was probably from a dead tree I accidentally touched when I fell while in the river for the first time- it was an allergic reaction I had to whatever slimy grossness was growing on said tree, and after about 3 days, it was gone.  I said nothing of swimming. This "doctor" is amazing folks- he deduced that because I waddled out into the water and touched a tree- I'm ready for the Olympic swim team this year. "diagnosis". In fact, M gave me no real diagnosis at all. He medicated me. Content to keep me on a high and dangerous dose of epileptic medication- keep in mind I do not have any problems with seizures. Never have. So

The dirty truth. Any distance further than the kitchen or bathroom, I take my cane. Yes folks- I have a cane. I finally broke down and bought one because my falling episodes were still quite frequent. I balked at the idea, refused, then finally decided it was safer for me to have assistance walking since a) Dad, Mom and my little sister wouldn't be able to walk me everywhere, b) not using a sword cane because it can't be brought into the hospital (even that one I didn't want to use), c) found that having it to lean on helps me move a little faster, and d) catches me if my leg gives out and I start to fall. I'm able to recover by shifting my weight to my left foot, and using the cane to keep me upright until I regain feeling. I don't fall all the way down and re-injure myself. I've caught myself in places where if I had fallen completely to the ground, there would have been a good chance my head would have hit something- and folks, I really don't want a concussion or any other head injury. I sucked up my pride, and I walk with a cane. I hate having anything that could give away the fact that I have chronic asthma... Now all of a sudden it's "hip" and "cool" to be walking around with assistance- so I bought it for fun?! Get real. It's needed. The walker, however, I vowed to destroy before venturing into public with that blasted thing. Cane was the compromise. Now when I'm old and decrepit, and need assistance walking around... Then, and only then, will I take up the walker. And I want a blinged-out basket on the front to store things in... Like Fig Newtons, cell phone, tissues, and hand sanitizer. Maybe even a cookie or two, but always in there will be a bar of chocolate. No ifs, ands or buts about it.

I'm patiently waiting. I'm playing by the rules, doing everything I can in order to fix myself up and be ok again. I'm quickly coming up on 6 months of being in this pain. I just want it gone. I want the spasm gone. I don't want to need these medications, the cane, being around someone 24/7 in case I fall. (which I'll happily report since being on the new medication, is happening less frequently now... though yesterday morning I fell coming down our stairs- I was on the last few and managed to pitch backwards and catch myself on my hands. yes, it hurt) I've submitted the paperwork, gone to the Dr's, and a total quack, and finally when the light at the end of the tunnel nears- I get slapped with this shock. It remains the same... A day at a time, and I'll get there. Keep on moving- I'll get there. I just need to remind myself sometimes. Well, ok, often. But I'm not alone. I have all of you- my family, my friends.

In the Right Direction...

My fingers are crossed- we may have finally found the right path.

After having almost no luck with the "neurologist" I had been seeing, I decided he's no longer going to be treating me. I don't consider acceptable treatment giving me medication, upping the dose, and not really giving me any clear diagnosis as to what he thinks may be wrong. Putting a "Band-Aid" over the "wound" in the form of over-medicating me is not finding the reason the problem is happening- it's an excuse to keep me medicated and masking the pain. Not fixing it. The theory for the time being had been adult shingles without the rash. While it's certainly possible that I may have had it- for one, I've already had a BAD case of chicken pox (thank you MIKE, love you darling brother) when I was in 5th grade or something like that. So I was little, but not like... 5 years old. Secondly, shingles almost always presents itself with a rash somewhere on the body. In rare cases, it will not. However- the interesting fact I found out while researching and confirmed by my awesome Dr. C Thursday was that shingles is not what I have. Anyways, this "neurologist" was about as friendly as a week old rotted cold fish- and his front office staff wasn't much better.

I was supposed to have an MRI on my head, to see if anything neurological was wrong, but we couldn't get the images because my (NEW) braces ghosted out the image and made it impossible for the machine to take a picture. Once told, Dr. M said "Well take them off, have the MRI and then get them placed back on. I need to see that picture." My retort was "Well, are you going to pay to have them removed and replaced? It's a few thousand dollars that I don't have right now."

His response was, "Well, how much pain are you in? Let's increase the dose. I have a medicine that will take care of the spasm, but we'll get the pain under control first." Weeks later, he's got me on orders to up the dosage of Neurontin from 600mg a day, to 900mg, to 1200mg, and finally to 1500mg. You want to talk about useless?? The reason I've not been so present online, or taking my pictures for my project, is because I felt like I was underwater- every day basically staring at this screen- but not typing, not checking sites, drifting in and out of sleep. At that highest dose, it felt like I was scuba diving with an empty tank. I was sluggish, completely unmotivated, only lucid in the mornings before my meds- and in a lot of pain still. Dr. M was still convinced that it was shingles, but offered to bring his "nerve machine" up to test me. I will not be going back to him. Oh- did I mention that the highest considered safe dose of Neurontin an adult is supposed to take is 1200mg? Yeah... I was on 1500mg, and he wanted to increase it again... Which would have meant 1800mg a day. I don't think so.

What's this mean? That the problem I'm having with falling down suddenly, without warning, and the fact that I have the spasm right above my right hip, which can't be touched with anything but light fingertips... Leads that shingles theory to a big fat death. The nerve cluster at your pelvis/hips is a network of many, many nerves. There's no way shingles would attack multiple nerves. Statistically it's impossible... One nerve, yes. Two- very rare cases. More? It's not shingles.

Where does that leave me?

Each time I've seen my doctor, my back has been out of alignment. Once fixed, it typically will last a few days and then I'm right back to feeling my lower back move around, a pop, and severe pain. My bones slip right back out of place. It happened right after Dr. C was able to adjust me on Thursday- and last night, I felt it slip out when I was slightly leaning over to pick up my cup of water. A Domo cup from 7eleven. Not heavy or anything- POP!

Anyways... The diagnosis is Failed Back Syndrome.

Typically, people develop this after back surgeries- of which I've had none. What we've determined is that after my car accident in March 2007, and then falling down the stairs right after Christmas that same year... I've stretched and torn the hell out of my ligaments in my lower back. I had been seeing an awesome chiropracter which helped me immensely, but for whatever unknown reason back in March the spasm settled in and I've been hypersensitive ever since. It will not release, even with the medications and small adjustments. Well, I should say the old medications. I've now been put on a new one that will, fingers crossed, help keep the majority of the pain at a bearable level. On a scale from 1-10, when I came home in March I was well over 10. With the treatments I've had so far, I've been a consistent 4-7, depending on the day. This new medication I'm holding pretty good at a 3-4, sometimes a 5. I think it also has to do with the other few ones I've been kept on as well, and combined it seems to be helping.

I am, however, still pretty unmotivated to really do much of anything. The new medicine is also an anti-depressant, though it isn't used to treat depression. I've been down- but hell... Wouldn't you be too if you were in constant pain, 24/7 since March with limited relief? I'm not really depressed as much as I am  frustrated. I don't feel depressed. I feel pain. Lots of it. And looking forward to getting this under control. It also builds up the casings of the nerves in the body in order to bring the nerve pain down- which is what we're going for. And so far, so good. It seems to be working. We're also hoping that with this medication, it will help my Dr to adjust me and have my back stay in place. The only side effect I've noticed is that I'm pretty tired, but I don't sleep, and at night I have a very difficult time getting to sleep unless I stay up so late that I pretty much just konk out. I don't like 2 or 3am bedtimes though.

The pain won't be around forever... And I'm optimistic to say goodbye to it!

I want to start yoga, or pilates. I have to wait- because too much movement right now will make me relapse right back to before. So it's more of the sitting around, not doing much of anything. That's what's, aggravatingly, going to heal me.

Now, if this doesn't go as expected or results are too slow, there's another option. I'm not really, totally looking forward to having to do this... However, if it's needed I'll do it. It's called Prolotherapy. In a nutshell, since my ligaments are so loose my lower vertebrae are moving around wherever they want in there- which they're not supposed to do- I may have to go this route. I'd have an injection that would purposely inflame the ligaments so my Dr can do an adjustment and have my bones stay in the position they're supposed to be in. Drawback??? The fact that this shot will leave me with a burning, stinging pain for about a week. And typical treatment for an area is 4-6 sessions. Oh joy. However- considering that I've put up with 5 months of this shit already... I think I can handle it. Heh, I know I can. This is only an option if this new medication doesn't work, or my body after some time doesn't firm up and keep my vertebrae in place.


I hope this explains a little bit as to why I've been absent.
I just haven't had the heart, the motivation, the drive to really do much of anything. Pain can be so debilitating. I know people mean well when they tell me I can do it, that I'll get past this, I just need to dig in harder and not let it get to me. You know what... It's hard to do that. It's so hard to get out of bed in the morning, because it hurts. It's so hard to try and focus on what I want to do in the near future- I can barely think forward to what I want for lunch most days. Well, scratch that... Dinner. I don't really eat that much anymore because of these medications. I've dropped 40lbs since coming home, and I'm losing more. I forget to eat breakfast, and lunch. Sometimes I'll snack in the afternoon, and dinner is small. I've lost weight, just not the "good" way. But it's staying off. It's hard to see people out walking around- I can hobble to a bench if I need to. I can't go shopping. I have a hard time moving around. I can't pick anything heavy up. I risk throwing my back out if I bend too low to pick something up. Twisting the wrong way will do it too. I miss fishing, camping, hanging out with my friends doing stupid things. Going to an amusement park, riding the rollercoasters. Walking around downtown and barhopping. Normal things that don't require a lot of effort. But to me... They take up nearly all my energy.


The thing I hate the most is people telling me to just block it out, get over it, suck it up and just deal with it. To them... I have a few profanities I'll scream in their face. Until you deal with pain like this, constantly, every day little to no relief and no answers coming from the so-called "professionals" (with the exception of my awesome Dr. C) and being over-medicated because they want you doped up- I don't think you'd survive an hour.  At this point, I think birthing a child without medication would be a walk in the park for me. And yes, that was a joke. Otherwise, most folks have been incredibly supportive and offered me surprisingly more hope and encouragement than I ever expected.


So to all my friends- thank you so much for offering your kindness.
You have no idea how appreciated it is.
And  yes... This does mean I'll be resuming my photography project.

Day 25 - Cupcake

Day 25 - Cupcake, originally uploaded by The Snarky Princess.

My cupcake.
I got it for my birthday, from my sister.
When I look at it, I think of sugary goodness. I think my favorite kind would be molten cupcakes.

Chocolatey ooey gooey goodness topped with ganache frosting. No, that's not fattening or anything. :)

Hey, a girl can dream about calories- right?! That's not as bad as actually eating them....

I'm off to find a Hershey Bar.

Sorry...

I haven't posted pictures for the past few days.

I'm still trying to get used to the medication change, and well... It's knocking me on my butt. I'm feeling exhausted, tired, underwater and out of control. The pain, at least, is numbed for the most part at this point. The spasm is still there- 12 more days and I'll have been like this for 5 months. Too long.

It's amazing what a little makeup can do though... I can "paint my face", and I look healthy. I'd take more before/after pictures- but I really don't want to scare people. The bags under my eyes are getting a deeper black/blue. They're puffier lately too which I've noticed. I need to moisturize more than I have been- I'm getting laugh lines at the corner of my eyes, and underneath. But it's alright I suppose... I'm aging. I still look young. When I get back to my good days, I'll feel young. I'll act young... Wait, I don't need to wait for that. I already do. I've figured out that applying the same primer that I use on my eyelids- to get eye shadow to stick and stay all day without smudging- is fabulous to use over these dark half moons under my eyes. The foundation sticks wonderfully. It conceals them almost completely... And I can do my makeup in such a fashion that I fool everybody. I look healthy- even though it's just a painted on mask. I'll be thankful for that at least- I can fool easily.

I've noticed that my leg almost cramps up before I fall- and anytime I feel that, I sit down. So I haven't fallen in 3 days already. That's the longest I've gone since this first started in March. I'd like it to just completely release and go- but I have a funny feeling it's just not going to be that easy. I'm also going to be looking for another doctor I believe- not my primary care, but the other one I've been "consulting" with. I've been like this for months too long. I should have had some sort of diagnosis other than "shingles without the rash". Well, I found out that 99% of people have that with at least a small rash for a short period of time when it first happens. It didn't to me. Nothing of the sort. I don't think it's that diagnosis. And now the "neurologist" I'm seeing is content to drag me on for months, increase the medication as I go, and "continue on my merry way".

I want to find the reason I feel this way. I want to find the cause. Taking more and more medicine, stronger doses as the weeks go by and I build up a tolerance for it, only masks the pain. It's not fixing it. It's like putting a band-aid over a deep puncture wound and saying "There! I fixed it!". No, that's not correcting the problem that there's a gaping hole that's bleeding like hell... That's not a fix. I don't want to continue to cover the symptoms I'm having- I want the pain gone (which, on this high dosage of Neurontin it's doing.. But leaving me foggy as hell) and not come back. I want the spasm to release, so I can walk normally. Sit without pain. Sleep without pain. It's all pain. Varying degrees, but still pain.

I've been trying to get my pictures up every day... I've been taking them, it's just a problem of when it gets to the end of the day, I'm so tired and worn out I just fall asleep. I don't do much. This bothers me. So many days, weeks, months. Lost. I can't rewind, get them back. But I will move forward- I'll find what's wrong. We'll find what's wrong. I'll be ok again- and soon. I just don't know what the key is- what's the way to get me back to normal. I don't have the answer to that question just yet- but I will soon. I hope.

Too Worn Out...

To do a picture post tonight. I did take pictures earlier today, so I'll get them to you tomorrow.

I just feel completely exhausted, even though I haven't done hardly anything. I'm drained- though little effort was exerted. I'm sore- it's thunder-storming. The rain that came in caused bad cramps in my back tonight... But it will dissipate tomorrow. I'll get you pictures tomorrow... Or, rather, later today!
Goodnight...