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Archive for the 'Gimp' Category

Dare I Say It?

Wednesday, April 30th, 2008

It's been quite some time since I've wrote on my personal life here, or taken the time to update my readers on my two great life struggles - my mental and physical health.

The reason I haven't been writing about my life is because...well, to be honest, my life sucked. Nothing particularly awful was happening other than the regular nuances of day-to-day living; it was my mental state that was, quite literally, sucking my will to live.

That's just it, you see? I had no will to live - not much of one at all, and that grew every day. As I, almost mechanically, went through the steps of getting through each day I always felt - just in the background - this omnipresent feeling of the other shoe about to drop. I would wonder how much longer I could go on this way. I didn't really speak to anyone about it, because I couldn't quite a put a finger on why or how it was happening...I just knew it was.

Everything I did was steeped in anxiety, frustration, and apathy. I woke up, forced myself to work, smiled and laughed appropriately at everyone, and came home exhausted from the exertion of pretending everything was okay. It wasn't. Baret saw this more than anyone, naturally, and how negatively this playing at a life I was uninterested in was destroying my very spirit.

The problem was the constant, nagging depression - just enough to not be overwhelming - and the growing anxiety. My anxiety has gotten worse as I've gotten older, and things I used to do with ease and no thought cause me to silently panic often. I don't share this with many because I have always been strong; the person who could do anything and had no fear. My growing fears and anxiety were like a sign of failure and weakness to me and I was terribly ashamed.

I was the one my mother and sister, more reticent and naturally shy, would look to or depend on to do the talking, sort of lead and take over if we were out and about. I liked this aspect of myself - I liked to be strong and dependable; someone that made others feel comfortable while I sort of took the reins. As this ability in me dwindled, I became much more introverted and solitary. I am no longer the social person I used to be. I've always preferred to stay at home, but that has grown into a leaving-home-makes-me-panic scenario. I am ashamed to even have to admit it and furious with myself for being weak.

A lot of it - I am sure - stems from the severe depression I was thrown into after my first surgery failed. I had to re-learn how to be comfortable in my own skin; for almost two years I felt like a prisoner in my body - a being that existed only in the mind looking out from the eyes of the broken shell I inhabited. Though I attended holidays and social functions, I was never truly "there". The ability to walk about and mingle was gone, too, so I often found a place to sit and sat there like a stump silently crying that I could not join in or be part of the activities and gaiety surrounding me. Isolation was my life.

This faded to some degree as I learned to live a now disabled life, and re-learned how to "live" inside my broken body. I learned new ways of coping, of surviving, and getting around. I can say I am never truly "comfortable", but even that is something you get used to. However, I do believe this left a (hopefully not) permanent scar on my psyche...so that now I am not the outgoing, extrovert that I once was.

It doesn't help matters that I have an obvious, severe limp with my "frozen" leg and often have to use a cane or even a wheelchair to get about. People stare. I can say that it doesn't bother me, but it does. I'm not like everyone else anymore, and I may never be.

Add to all of that struggle the fact that my brain is chemically imbalanced; even for a regular person learning to live with a painful disability would be challenging - it is even moreso for someone who is naturally prone to depression, anxiety, and mania.

All of this has accumulated and I - at this point in my life - was going downhill rather quickly. I knew it, I felt it, and I pondered when the end would finally come. At some point, I realized, I was going to totally lose it. A nervous breakdown would have been the least of it; suicide the worst.

This didn't frighten me as much as you might think. In fact, in some ways, I wished for it to come. I was that miserable. I knew I could not continue to live with this warring in my brain for much longer.

Then, suddenly, things changed. I got a new primary doctor - one who cares about his patients. (Why I left my old one is an upcoming post) I got referred to a new pain management specialist, who also cares about her patients. Sadly, since 2002 when all of this began for me, a doctor who gives a crap has been nearly impossible to find. And now, I have two.

I have been put on Lyrica...and it is changing my life. I started it on Friday night (April 25) and by Monday was noticing a difference. My pain management doctor is working me up to 75mg twice a day - but I am already seeing results at 50mg.

Lyrica "tricks" my brain into thinking there is no or less pain (or at least makes me okay to deal with it). Since starting it, my intake of Lortab (I was on Hydrocodone 10mg) has decreased noticeably. Whereas I was having to take upwards of 4-6 pills a day (something I constantly worried about and the consequences to my liver), so far on Lyrica I can get by with 2-4 pills a day. I am hoping even that will lessen as I increase my Lyrica dosage.

Not only has my pain improved, my mind has! It has been nothing short of a miracle. My pain management doctor explained that Lyrica is also a mood stabilizer and will help with my anxiety. And has it ever! By Tuesday morning, I realized, I felt...

It's really hard to say it because I can't believe it myself. I felt HAPPY. I vaguely remembered the feeling and Rose estimated it's probably been close to two years since I've felt that way. Instead of worrying about everything with my mind racing, I was just...ok...and "in the moment". I walked into our breakroom that morning and stopped to enjoy the beautiful sun rays coming in the window and was stunned. I was appreciating the moment, enjoying the sun, and my mind was not worrying or running crazy in the background. I marveled at this, and wondered, "Is this how other people feel?".

It's only the second day of feeling "ok" and I'm scared to be too hopeful, but so far so good. My pain is already less and I think we can make it manageable. My mood has improved in leaps and bounds - Baret is stunned at the difference in me - and I now have two good, caring doctors who are going to help me heal in all the ways I need to. Of course part of me is terrified to be too hopeful - that has blown up in my face so many times in the past - but I can't help but feel this is it, this time I am going to get "fixed".

And so that is that and where I've been and where I am. At this very moment I couldn't be happier - something I haven't been able to say for a very long time. Cheers.

Pain? What Pain?

Wednesday, January 30th, 2008

As many of you know, I suffer from severe arthritis and arthrofibrosis after two major leg surgeries that - lucky me - left me worse off than I was before. This, understandably, causes me a great deal of pain in the day-to-day business of living.

I am still able to work and drive, and I thank my lucky stars for that - I can walk, though with a limp (sexy, eh?) and sometimes a cane. I have "rock-star parking" (or a handicap tag, if you want to be a jerk about it) for life, so there are a few quirks. Though I am blessed in being able to still get around, for the most part, and do some things it is not without considerable pain. Especially at this time of year, with the temperature yo-yoing between humidly warm and bitingly cold, and the frequent rain that comes through dropping the temperature. Not this gimp's best time of year, as you may well imagine.

Not only is my condition chronic (as in permanent), but it is also progressive. It gets worse, it will get worse - yada, yada. I'm not bitter - far from it. In all honesty, this condition has given me an amazing outlook on life - I've learned not to take anything for granted - and gifted me with a special kind of empathy for those that are suffering, mentally or physically.

I, also, wouldn't be who I am today if not for these struggles I've gone through, and I happen to like me...so it can't be all bad, right? Sure, I might someday be completely crippled and wheelchair-bound, but so what? It could always be worse. I spent the first three years of this disability, after the initial surgery in 2001, depressed as all hell and feeling like a prisoner inside of my own body. I'm done with that. The grieving period for the loss of my mobility is over; now I'm living life to its fullest, doing what I can while I still can and taking every moment as the blessing that it is.

That all said, there is still the matter of pain, of which I'm not a fan. The pain has gotten worse, so that - to enjoy and still be able to do the things I once did - I need some help. Help comes in the form of little blue pills, known to the world as Hydrocodone, or in layman's terms, Lortabs. I don't like having to rely on pills to help me get through my day, or to be able to accomplish something as simple as shopping or a full work-day, but there it is. It's just getting to that point.

On Monday I saw, for the first time, the doctor that will become my pain management specialist. Because the pain is chronic, he suggested we try something longer lasting, because popping Lortabs all day long isn't exactly healthy for the old liver (that Acetaminophen is a bitch like that). He prescribed Contin MS for me - which is, I'm not so thrilled to report, a synthetic morphine. It's time-released and will last for 12 hours - so that instead of taking 4 (and sometimes up to 6) Lortabs a day, I can take the Contin MS and maybe only 2 Lortabs (or none if the weather is right and I haven't been overdoing it).

That's the thing. I'm not in agony every day. It all depends on the weather, what I've been doing on the legs to date (if I've been working hard and on them a lot, obviously the pain is worse) They always hurt and ache, don't get me wrong - but sometimes (more often in the warmer months), it can be bearable. Other times, it's bad enough that I can barely limp to the bathroom without pausing and grasping onto furniture for support. Sometimes I can live with it, sometimes I can't. And the times I can't are what the meds are for.

What scares me - I'll admit - is that the times I can't are getting more frequent. I used to be able to go much longer and do more on my legs without this kind of debilitating pain; now, not so much. I know my condition is progressive...that it will deteriorate and grow worse with time. Still, I was hoping to have a little longer. I'm only 30, and the initial surgery was in July 2001; I had just hoped it would hold out a little longer. I knew someday I was facing "pain management" and a life on pills - yet I had hoped it would not come so soon.

Still, I refuse to let it slow me down or get me down. There's no use in that, and self-pity does no one any good. I have to make the best of it, and work hard to control all of this. I've started doing Peggy Cappy's Yoga for the Rest of Us DVD and am reading her book, Yoga for All of Us: A Modified Series of Traditional Poses for Any Age and Ability. I have always wanted to try yoga, but getting into the traditional poses is difficult for someone with a "frozen" leg like mine; Peggy Cappy has re-worked traditional yoga for the elderly, out of shape, and disabled and it's really wonderful. Using it once a week, I have noticed a difference. If I can get my lazy ass to do it every day, I think it would be very beneficial for me.

This summer, I also plan to get back to swimming, which is a wonderful exercise for someone with disabilities. The resistance of the water is perfect for keeping everything in shape and even helping with the arthritis.

So I'm fighting this and working with it all at once. If I let myself dwell on the fact that I need pain pills and a low dose of morphine to get through my day, I just start to get depressed - and that isn't helping me, now is it? So I am focusing on needing less of those things...doing things that will aid me so that I don't have to take pain medication every day, or - at least - all day.

And that's the best I can do - any of us can - just to take it step by step, day by day. Thanks for listening.

Not Such A Happy Halloween

Wednesday, October 31st, 2007

As all of you know, my "gimp" status is well-earned. I have suffered from bad knees since birth, a condition that caused dozens of right-knee dislocations from the age of eleven on, and finally resulted in major surgery at the age of twenty-three; surgery that was supposed to "fix" me and aid me in living a more normal (and much less painful) life.

The dream was never to be - the 2001 surgery left me worse off than before. I've had arthritis in my knee since my earliest twenties due to the wear and tear my condition caused every time I took a step - I also scar terribly, resulting in a severe case of arthrofibrosis. Three months and two manipulations later, I was no better and have lived with a painful, "frozen" leg since.

In 2003, I underwent surgery to "clean out" the scar tissue. I woke up to my three-day hospital stay with 20 staples in my leg and a morphine drip, my leg being worked in a CPM machine. The machine came home with me and I stayed in bed most of the day hooked to it; at night my leg was bolted down into a Dynasplint, which put increasing pounds of pressure on my leg as I attempted to sleep to aid in regaining my extension. Things went well until winter fell, and the arthritis and pain left me unable to continue with my rigorous physical therapy - soon I was right back where I'd began.

Today I get by as best as I can with my condition. The doctors say there is nothing left that they can do for me except for a total knee replacement - something they'd like to hold off on for as long as possible as they only last approximately ten years and I am only in my twenties.

Recently, I began getting cortisone injections into my right knee; painful but somewhat effective. The first shot, on September 12, relieved some of my pain for a couple or three weeks. However, as the seasons began to truly change and the pressure and temperatures dropped, I began having extreme pain and difficulty with mobility again. My doctor agreed to give me another cortisone shot, even though it was soon because "your knee is so messed up, and there's nothing else we can do for you". I will, after this one, have to wait the normal three month period before I'm eligible for another.

The first injection in September - though painful - went well. I was sore and swollen for a few hours afterwards, something that putting ice and keeping my leg elevated healed quickly. This time, however, I was not so lucky.

The first time, The Worm came with - and drove me home. This time I went by myself (he was at work) and drove myself home, I also hobbled quickly around the house getting myself settled (leg propped up, ice placed atop). I have read that the cortisone shot, while not a pain killer itself, does give an anesthetic effect for the first few hours. It was during this time that I believe I over-extended my leg.

I had myself propped up on two pillows - instead of my medical-issued foam lift - and, in the less-feeling state straightened my leg out more than it is used to (or capable of) being extended. I remember pressing down on my leg with the ice pack, and a few hours into it feeling "odd"...that my leg was "straighter" than it normally goes.

This was quickly followed by extreme and agonizing muscle pain. I cannot move my leg without mind-numbing pain on the underneath of my leg - it feels, the best I can describe it, exactly as it did after waking up from manipulation procedures - where the doctors bent and straightened my leg past its normal limits, breaking up scar tissue in the process. I was always in utter agony waking up from those, as you can imagine.

So here I am on my favorite holiday, laid up in bed, unable to even make it to the bathroom without my long-since put up crutches - any weight placed on my leg at all sends me into spasms of muscle and joint pain. I am missing work (again) due to my leg problems, and now am going to miss out on my most beloved holiday.

I try not to let my leg slow me down or keep me from living my life to the fullest point possible - but times like this it is extremely frustrating and depressing. I am handicapped, disabled, and I will suffer with this condition (which will only grow worse) for the rest of my life. It's a daunting reality that I cannot help but face at times like these.

So here I am, laid up in bed, with my books, laptop, and the TV to keep me sane, thinking about how my usual luck caused my doctor yesterday to prescribe me a lesser dose (5mg) of my pain pills than I usually get (10mg) - something I'd just deal with had I not ended up this painful, unfortunate situation.

I hope this won't last but a couple of days - though I don't know for sure how long it will take to heal. The key is to stay off of it as much as possible. So send me your white light, good thoughts, and/or prayers - I certainly need them! Thanks for listening.

Progress

Thursday, September 2nd, 2004

I haven't said much about it lately, but it's only because I needed a break from it - my recovery was the focal point of my life and I needed to get away from it. Not that I haven't still been working at it or anything, but I haven't been posting about my progress. I was taking a break from that focused will I'd had to conjure.

Saturday I started using a cane. For the first time in two years and two months I can walk without the aid of a crutch. It's an amazing feeling - inside. On the outside, it hurts like fucking hell.

The first few days were fine, but once my muscles realized this was the way it was going to be from here on out - that it was time to come back to life and really work again, they began to rebel against me. I have a lot of difficulty walking because my heel, which hasn't touched the ground in all these years, is killing me. Every step I take I have stabbing pains that shoot up from the sole of my foot at the heel and up through my leg. My ankle is a roiling mass of achey pain and my calf muscles are in about the same state. My thighs are screaming at me in shorts bursts of sharp pains that run the length of my legs. An old arthritic man hobbling on a cane has nothing on me.

If I didn't have the pain pills to help ease it, I don't know that I wouldn't jump right back on the crutch for half the week. Okay, I probably wouldn't anyway - but thank the good gods for hydrocodone, that's all I have to say!

This is a huge step - Saturday evening, after my first few hours on the cane I broke down in a torrent of tears and heaving sobs. For the first time that pinprick of light I've been seeing at the end of the tunnel shone forth as one bright beam - a beam that I can follow and that will lead me back OUT. I cried with relief and the release of years of fear and pain and frustration, and I cried with fear for what is to come and of failing this far into the game.

So that's where I'm at - and I know a lot of my strength has come from the many people sending prayers, light and healing energy. Just you're coming here to check every day to see how I'm doing sends those vibes to me. Thank you - thank you all for your support, and your belief in me that I could do this.

I Need to Get Out

Friday, July 30th, 2004

Forgive me for not updating sooner, but I've been in low spirits. The constant scenery of my bedroom walls and the endless drone of nothing-I-want-to-watch on TV had been starting to get to me. In the machines, I was doing great - outside of the machines, progress wasn't what I'd been hoping for. Although I was doing everything the doc said, and more, it still seemed I wasn't progressing much further than where I'd been pre-surgery.

But yesterday evening we had a breakthrough. I was lamenting to Baret about my seemingly non-existent progress and he told me to try walking with him across the room, holding on to his hand. We did this back and forth for some time until the last two steps back to my chair, he just let go. And I walked. It may have only been two steps but it was the first two steps unaided in two years. "I walked," I said, and then dissolved into a sobbing mess. I, for the first time since it all began, felt like this was really and truly going to work - I finally had some concrete proof.

I walk really well with a brace on my leg that keeps it straight, and we're staying with that until the muscles build back up. I may have to get some type of support brace for my ankle, which now feels like it wants to snap - not used to the weight. But I'm doing well - I can make it back and forth across the room a few times using a cane, and sometimes I can even do it without the cane. No crutch shoved up under my arm - it's a weird feeling. Now I've got to come up with some decent exercises to work on the bending/flexion part; I think I need an exercise bike or something. I also plan to start swimming in the complex's pool where I live; we just recently got the pool key card.

Just wanted to let you in on the awesome news - I WALKED!! It's baby steps now, but if I keep doing it, soon it will just become old hat. My goal, seriously, is to be walking by Renaissance Festival. That sounds so geeky, but we went last year and it was my first time. I loved it, except that I had to be pushed around in a wheelchair. It really marred my time there and I vowed that by next year I'd return and be walking. It's sometime around Oct-Nov. so I may just make that goal. I've even found the dress I'm going to buy - sort of my reward to myself for making it. This is it.

On a strange note - my Google ads up top are now for staples. -shudder-

Staples

Wednesday, July 21st, 2004

Whoever it was that told me having staples removed didn't hurt lied. And not a sweet, innocent little white lie either.

Can we say mother fucking OW?!

The little contraption, that looked strangely similar to a regular old staple-remover, grabs the staple and then pulls it in opposing directions, so that it can easily then be pulled up and out. Unfortunately, there were a few things in the path of the pull - like my skin. The little staples ripped through a small portion of skin on their outward course - leaving me bleeding and on the verge of passing out. But I'm a wussy.

It honestly wasn't horrible, but it wasn't anything I'd ever like to have to go through again in this lifetime. I took a quick breather about halfway through - and then asked him to hurry through the last 10 or so.

It's amazing the difference it has made, though! It doesn't hurt nearly as bad to move around when my skin is not being pulled and torn by the staples.

The doctor said I'm doing well, but he's still concerned about the straightening. I'm not fully straight - and even though when I walk I can now put my heel down (an impossibility before), it's still not straight enough to permit normal walking. I can hobble around on one crutch again, but it's slow going and I need to work past that. He wants me in the rack Dynasplint during the day as well as the night at varying 3 hour intervals.

I ran out of Percocets and am now on Loratabs - my only fear being they won't be strong enough to enable me to stand being in the rack Dynasplint; they weren't two years ago when I first encountered the Dynasplint during recovery. If they don't work, I'll just have to call and ask for something a bit more strong.

My spirits are still high, though, and that's good. I keep thinking of all I'll be able to do and it keeps me going strong.

Thanks everyone for your continued thoughts. It means so much that each of you keep checking back here to gauge my progress and are still sending positive vibes my way; it really does help so!

CPM Machine & A Dynasplint

Tuesday, July 20th, 2004

A quick update.

Things are still going well - every day I can do a bit more. I've been staying in the CPM machine 6+ hours a day and have even been able to top the 8 miserable hours in the rack Dynasplint.

Yesterday, I'm so happy to report, I took my first steps! One crutch, putting my heel down and walking. My leg still isn't fully straight - and it's still up in the air whether it ever will be - but every night in the Dynasplint helps and I'm still only putting 2 lbs pressure at 8 hours/night - eventually we'll move gradually up to 4 lbs pressure; so there's still hope I'll get much straighter. But taking those first few steps really felt like a breakthrough to me. I imagine what it will be like to walk crutch-free - how amazing!

I am also able to lift my leg again - after surgery I wasn't able to lift it or move it much without using my hand to force and guide it. That happened after the first surgery as well, but as of today I can move it, lift it, swing it to the side - it hurts like the dickens, but that will go away.

So all's well so far. Just wanted to let you know. I don't get on here much because it's 6/hours or more a day in one and 8/hours or more in the other - so I'm in bed a lot. But I'm doing well! Keep thinking of me!!