Saturday, May 30, 2009


Sometimes we can psych ourselves out with the expectations of the pain. We wake up knowing that we are going to hurt, and surprise surprise, we do. Don't get me wrong, I am NOT FOR A MINUTE minimizing the pain of RSD. It is akin to living in a torture chamber - there is nowhere to go to get away from the pain, but the mind is a powerful thing, and we can certainly psych ourselves into more pain than we physically have. In that same vein, we can psych ourselves into feeling better. Every time I take my pain medication, I say to myself "okay, help is on the way, this pill is going to make me feel better!" Does it always work? Well, no, but it can't hurt. Watch your own expectations; don't make things worse for yourself.

Many years ago, at the beginning of this journey, I had a permanent epidural catheter in place. I loved it - I got decent pain relief from it, but my body rejected them all. While I still had one, I got some pain relief, but I also had some numbness and weakness, which caused me to take a bad fall onto a concrete parking stop. I did a number on my knee - yes, the same knee that my RSD started in. It wasn't pretty!!!

My knee swelled so badly that I had to have it opened. When the surgeons did the skin graft to reclose, some bacteria remained in there, and had a HUGE party! My surgeon said it was RSD causing the swelling, redness, and tightness in my whole leg, and my Pain Management Dr. said that it was infected, go see the surgeon.

By the time they figured it out (okay, I bullied myself into the surgeons office because I knew that it was infected), My leg was HUGE, a funny yellow color, and the infection was in my pelvis and belly. I went into emergency surgery within the hour.

I tell you all this because it does relate to my opening of expectations. My surgeon came to see me just before surgery, and he told me that he was going to have to remove my leg at the high hip. And then there was dead silence. What do you say to that? "Okay doc, see you later"? I couldn't think of anything to say. I had this strange desire just to touch my leg, figuring it was the last time. Imagine going into surgery knowing that you will come out without your leg. It was powerful, to say the least. I didn't even have time to call my mommy and sob.

I woke up from surgery, and I literally didn't want to look down. I refused to move my hand down to where my leg should be. I knew it was gone, but I didn't want the confirmation. I finally screwed up my courage, and put my hand down, and ..... HOLY CRAP. My leg was still there. My surgeon came to see me once I was fully awake, and he told me that once in surgery, he had decided to be bold and try to save it. He said that it may all come to naught, he could have to remove my leg at any time, but we would try it.

I have never been so happy to be in so much pain, and to face so much rehabilitation, and have the RSD be so much worse. I was thrilled!! It was all about the expectations. I expected to have no leg - I had my leg, and the rest wasn't as important. Don't get me wrong, it hurt, and I never did fully recover, not to mention I have some of the most outrageous scars on my left leg, but I have my leg.

Perhaps my doctor did that on purpose so that I would be happy with him for causing me so much pain. He set my expectations one way, so that the true outcome seemed like a real bonus! How goofy; but I learned a lot. I learned how powerful the mind is as a healing tool, and how powerful it can be for leading us down to the depths of depression. And I try to never forget that. Stay positive, stay in control.

Friday, May 29, 2009

The best laid plans of mice and me!

As you may know, when I started this blog, I had every intention of posting every day. Okay, I missed a day here and there, I even missed three days in a row once because I was feeling lousy. Well now I've really done it: I missed two weeks!! But I have a good reason -- I'm stubborn.

My crappy, poor excuse for a body lets me down so badly. I get so angry when I run into things I can't do without lots of pain. Every now and then, usually about twice a year, I get fed up! I've just had it with limitations, I can't do things that most people take for granted, and I get so frustrated. So I do those things anyway! So there, that will teach me! Hmmmm

Well, two weeks ago, I blew right through my limitations, and boy am I paying for it. Chronic pain is akin to instant Karma. On Thursday, I took my nephew Luke to Chuck E. Cheese's place. He has a great place, Chuck does, but it's loud and chaotic and really really warm - just the way kids like it. Just the way RSD hates it!

Then I cooked all day Friday for friends of ours who just had a baby. I made four different dishes, 2-4 meals worth of each. We had some friends and family over on Saturday, who I also fed, then we visited the folks with the new baby on Sunday - and loaded their fridge and freezer. On Monday, I lapsed into semi-consciousness, unable to move with searing pain. I was a mess!

But how could I say "no" to any of those activities? Okay, maybe I could have, but I didn't want to. Dammit, I wanted to do it all!! So I did. Two weeks later, I'm still in bed, not having left the house once! Heck, I don't think I brushed my teeth and my hair in the same day since.

Now don't get me wrong, I don't regret any of what I did. I just wish I could be smarter about the choices I make. I wish I wouldn't act out of frustration, but out of reason instead. Like I said, every six months or so I have to learn that lesson again. But I think what I've learned is that it's okay to push your limitations ONCE IN A WHILE. I just need to make that choice with a clear head, not because I'm angry about the things I can't do.

I think I'm getting better at that, but it's hard - we all want to do everything. I don't like choosing between two things that I really want to do. I like to prove that I can do what I want to do. But then, I'm not quite sure who I'm needing to prove that to. If I just need to prove it to myself, then that's just being stubborn.

Thursday, May 14, 2009

What is RSD?

RSD (Reflex Sympathetic Dystrophy), also called CRPS (Chronic Regional Pain Syndrome), is a degenerative disease of the autonomic nervous system. It generally comes about after a trauma such as a broken bone, sprain, or surgery, generally of an extremity - mine is as a result of knee surgery. The autonomic, or sympathetic, nervous system is in charge of all of the involuntary things that your body does: heartbeat, temperature control, pain, skin color and texture, circulation, hair growth, and so much more. When you have an injury, the sympathetic nervous system comes to your rescue sending more circulation, swelling, and pain signals to let you know that you have an injury. In RSD, the sympathetic nervous system never shuts down after the injury. It still thinks that there is an injury, so it continues to fire pain, swelling, etc. signals long after the injury has healed.

Sometimes, if diagnosed early (within the first 6-12 months), RSD can be reversed. Unfortunately, this happens all too infrequently. It is a rare disorder (although more people have it than one might think, considering most people have never heard of the condition) that often goes undiagnosed because the doctor thinks that the pain will go away if you're patient, that the patient is exaggerating the pain, or that the patient may just want more pain medication and is therefore making up the pain or its severity. Of course, it could just be that the doctor is unfamiliar with RSD and so misses the signs and symptoms. If it is not caught early, RSD is permanent and degenerative.

The pain, often described as a burning sensation, becomes much worse, and the symptoms can and often do spread, first to the opposite limb, then to the other extremities, and finally to the whole body - called Systemic RSD where the disease has spread to the spine and brain, as mine has long since done.

When RSD has lasted long enough (I've had mine for more than 15 years), the pain becomes unbearable, and actual tissue damage takes place. The bones become soft, brittle, and porous; there is wasting of the muscles; skin, hair, and nails change in texture, color, and consistency; all joints tend to become arthritic; and muscle spasms can deform and actually dislocate joints. Muscle spasms have even been known to be so strong that casts are broken. Again, the disease is degenerative and incurable - basically a living nightmare!

It is so painful that sleep deprivation becomes a problem. Most RSD sufferers have disrupted sleep patterns with all of the resulting symptoms. Many are wheelchair bound, &/or bedridden. I have been confined to a wheelchair for 10 years, and leave my home maybe once a week.

The only treatment is to manage the pain as best one can. Medication-wise this is done with nervous system relaxers, antidepressants, and strong pain medications like Morphine, Methadone, Oxycontin, etc. I have been on 40 mg of Methadone per day (the maximum for me) for 5 or 6 years (by comparison, a heroin addict in a Methadone clinic might be prescribed 5 to 10 mg per day). It does not come close to killing the pain. At most, it takes some of the edge off of it. Unfortunately, there is no pain medication that is very good at killing nerve pain.

Not enough is known about the nervous system: why some people get RSD while others have similar injuries or surgeries and recover just fine; why RSD spreads; why the nerves can't be "jump started" to get them behaving normally again;or etc. It's a frustrating disorder for patient and doctor alike.

Here is a good website if you would like to learn more:

For me, RSD is a nightmare. My doctor has tried everything to give me some degree of pain relief, without good results. I have had multiple operations, nerve blocks, permanent epidural catheters delivering anesthesia and opiates (decent pain relief, but my body rejected every one), TENS, implanted spinal cord stimulator, and enough medication to knock out a horse, all with little lessening of the pain.

It's truly a horror: I'm in tremendous pain! But I have actually learned to cope. I dug myself a deep dark pit of despair, and lived there for about 3 years. Every time I thought I saw a light at the end of the tunnel, it turned out to be a train. I was in and out of the hospital, including one five week stay. But eventually, with a lot of hard work, I clawed my way back to the surface. I have learned a lot in these 15 years, and I am on a mission to share what I have learned. I know the despair of this diagnosis, I understand that I will never be pain free again. I've actually come to terms with that, and I believe I can help others get there too.

My goal now is to share what I have learned; to help people who are newly diagnosed or long-term sufferers to realize that they can do it. If I can help even one person NOT spiral down into the kind of depression that I just barely lived through, all of this pain will be worth it. That's saying a lot, but it's true. So if you are in chronic pain, from RSD or some other reason, or you know someone who is, please make my blog a regular stopping point. And feel free to post: ask questions or tell your story. I want this blog to become a positive place where we share ideas and things that have worked to ease our pain. If we stick together, than when one person is having a bad day, the rest of us can lend support.

Wednesday, May 13, 2009

When the pain gets really bad.

As I've mentioned, RSD is a degenerative disease; my pain will continue to get worse. Today is the best day I'll ever have, and to be honest, today SUCKS! Every day I wake up and think, "I cannot imagine the pain ever getting any worse than it is right now." And the next day, I wake up, and it did.

But, as my Doctor is fond of telling me, nobody ever died of RSD. Maybe not, but sometimes we sure wish we would. It's truly horrible!

I think I've talked about my dog Buddy before (The Importance of Pets! 4/21/09). He is a found dog, he was dumped in a park (a special circle of Hell exists for people who dump animals). We took him home and immediately noticed that there was blood in his urine. A bunch of tests later, and we found out that he had a huge cancerous tumor. We were devastated, we knew there would come a time when we would have to put him to sleep. We were told that it would probably be weeks, maybe a month. As I write this, he is laying next to me, 8 months later. He's truly a lesson in "doing it your way."Apparently he didn't get the memo that he was supposed to die 7 months ago. And it's not that we are prolonging anything. He eats like a pig, he drinks, he runs and plays, his tail is constantly wagging. He is the picture of a happy "healthy" dog!

And yet, we know the time will come. As our vet says, he's living in Hospice care right now. He has every right to be angry, depressed, lethargic, in a lot of pain. Instead he is the happiest dog. There's a lesson there! Now I know dogs don't understand from being sick, or from dying, that's not my point. What I'm saying is that we know he's in pain, at least very uncomfortable, but he still lives his life. It's inspiring for me.

But our vet also told us an interesting story the last time we were in his office. He said that he watched his mom die of cancer. She was always in horrible pain, so they gave her enough pain medication that she wasn't even aware of her surroundings, she had no idea that her son visited her. And our vet kept thinking that "he couldn't even do for his mother what he would do for his patients." He couldn't give her an "easy out," one with grace and dignity. Why do we do for our animals what we won't consider doing for ourselves?

Okay, there's Dr. Kevorkian, but look what happened to him. John and I have talked about it several times. We've said that it should be my choice, that if the pain and everything else ever get that bad, he would "help" or at least be with me. But really, do you ever get there? Would I ever really say "okay, today is the day." I don't think so. Because dogs can't understand a hope for tomorrow either. Short of being in Hospice care, dying, I don't know that I'd ever give up. It's all well and good to talk about it rationally, but until you're actually there, I think it's an amorphous thing. Once faced with the actual "okay, let's do it," I think all the rationality falls apart. But I do find it interesting to think that we call it humane to "put an animal out of its misery." Humane? Am I less important, deserving of fewer rights, than an animal?

It's a tough issue. I'm not sure there are any right answers, or really any good answers. RSD hurts, it hurts a lot, and I hope I'm strong enough to carry tomorrow's load.

Tuesday, May 12, 2009

Who's the hero?

I have just found out that I have been selected as KRLD's Community Hero of the Week. They are going to spotlight me and this blog on Friday, May 15. If you're in the DFW area, you can listen to KRLD at AM1080. If not, you can hear it on their website, I'm thrilled that this blog might get some attention - I really think that we who suffer from chronic pain should stick together and help each other out. While one of us is having a bad day, I'm sure another of us is having an okay day, and can lend strength. When we turn in crisis for help, we are not looking for someone to stop the pain (although that would be nice, we know it's not realistic), what we are looking for is understanding, a gentle hug, someone to say "you're not alone; I understand."

I am also so humbled that John nominated me for this honor. To me, he is the hero. All of those unsung caregivers who make independent life possible for disabled people should be spotlighted. He is an amazing man. He met me when I was quite sick, with an epidural and a central line in place. I was quite honest about my situation and the struggle that is life for me, and for those around me. Did he run in terror? Exactly the opposite, he chose me as his forever partner.

He knew that he would have extra chores: he would have to do all of the household work, and he would need to help me. But I don't know that anyone can be prepared for the emotional cost of caring for a loved one. He has to watch me be in horrific pain, and know that there is nothing that he can do to stop that pain. That must be so frustrating for him. And yet he nominates me as a hero?!! To me, he is the hero. Without him, I would not be able to care for myself. I cannot live alone, so but for John, I would have to find some sort of assisted living. I'm far too young for that!

I think the life of the caregiver is at least as hard as the life of the person in pain. To all of you, especially John, a truly heartfelt thank you!! Those words seem so small, and what I want to say is so big. But those are the only words I know to express my gratitude for all that you do. You do so much. You see, John feels frustrated (along with my mom certainly) that there is nothing that he can do for me when I am suffering. What he and my mom and others don't realize is that they do the most important thing for me, they love me. That alone helps make the pain bearable. A gentle hug, some kind, loving words, that's what I need MOST when I'm having a bad day. I know that they cannot take away my pain, and so I don't expect them to. Hearing that they want to is what means the world to me.

Here's to caregivers - Thank You!

Monday, May 11, 2009

Last hopes.

So I rant about friends and loved ones having to understand that making plans with me is always iffy. There is always a chance that I will cancel at the last minute because it's a bad day. And yet, here I am beating myself up because I missed 2 days posting. I want everyone else to understand that bad days happen, but I refuse to understand it myself. I spend way too much time fighting against my limitations.

"So Judy, you had bad days, you couldn't post, get over it!!" Okay, I'm done now. Still feeling bad, but I'm working on it.

Onto today's topic. I was reading posts (and answering some) in some of the on-line support groups today, and I saw one where the writer said "I'm always depressed after doctor's appointments, and I don't know why."

I get the same way, but I do know why. I tend to put too much expectation on the next Dr. visit. I get to thinking "maybe he'll have something new for me" "maybe there is a new medication" "maybe he'll agree to do the pain pump surgery (a post for another day)." And I go see the doctor and he has nothing new for me, and says "bye, come back in 3 months." And then I lose it in the car on the way home. I'm usually depressed for a couple of days, and that's when the pain is the worst. It really hits me hard. I so desperately want there to be something new; I put my whole self into that hope, and when it isn't there, I'm crushed. Even though, in my head, I know there won't be anything new, I still take it really hard when there isn't.

I tell myself every time not to get my hopes up, but every time, I do. Why? I think maybe it's just the way it is. It's what people always tell me too: when I say that I have an incurable disease, people always say "you never know what the future holds. There may be a cure someday." People say that because "incurable" is too devastating, it's such a big and overwhelming word. But people say it because they believe it too. We all need hope.

I have to live for the hope that tomorrow may see a cure, or at least a treatment. I tell myself not to get my hopes up, but I'm not sure that that's reasonable. I think I live with my hopes up. I have to. If I lose hope, I lose everything. But it does set me up for a fall every time I see a doctor and that new treatment doesn't exist yet. Which is worse, being disappointed every now and then, but living with hope, or giving up the hope of help? I think I can only stay sane and in control if I continue to hope.

Also, I see so much progress in scientific fields: stem cell research, spinal cord research, nanite technology, heck, we have mapped the human genome. Why can't we solve the problem of pain? Unfortunately (for me anyway), nerve pain is the hardest to treat. The nervous system is so complex; it seems we know more about the surface of the moon than about the workings of the nervous system.

You'd think that there would be money in the research. Pain is costly, there's money in its treatment, there must be money in its research. And yet, I go to the doctor, and there's nothing new to help me. Why?

Oh well, regardless, I continue to hope. I have to.

Friday, May 8, 2009

If you want my business, don't overcrowd your store.

I guess this goes with wheelchairs are a pain, but I was in a store today, and it was so crammed with merchandise that I couldn't get around. I expect that at Christmas time, you don't want merchandise in the back room, you want it on the floor where people will buy it. I don't bother going to most stores near Christmas because it's just too frustrating. But it's May for crying out loud.

Several years ago, I think during Christmas time, I was in a small boutique-type store whose name I won't mention because I'm nicer than that. I had selected several items to purchase, and found that I could not get to the register. The store had so many point-of-purchase displays that it was impossible to get to the check-out counter. I held out my credit card and asked the gal behind the register if she could just come and get it from me, and she said no. She said NO! I was shocked. I explained the problem, and she explained that she wasn't allowed to leave the counter. I wasn't asking her to join me in the next county, she could still see her register from the grand 10 foot distance that I was asking her to walk. But she refused. I put my purchases down on top of her displays and I left the store.

Center Aisle Displays are the worst. Think about that - center aisle - as in, in the middle of the aisle. How am I supposed to get my wheelchair past that? And department stores go even further: they put their center aisle display on a table with a floor-length tablecloth over it, so that they can store the item that's on display under the table. Do you know how many times I have gotten those tablecloths caught in my wheels and nearly pulled the old magician's trick of yanking the tablecloth out from under the stuff on the table? Well, no, you wouldn't know how many, and I haven't counted, but it's a lot. And I'm not a great magician, store displays go flying, items are breaking, children are crying ..... okay, I go too far, but it's really a pain! If you want my business, no center aisle displays!

And it's not just wheelchairs, I imagine folks with strollers have trouble too. I understand in some states (California in particular) there are laws about how much clearance there has to be in aisles. Apparently those laws have not found their way to Texas. And these aren't even expensive modifications. I understand that making older buildings handicapped accessible can be expensive. Heck, most of Queens and Brooklyn, NY weren't accessible to me last time I was there. But store merchandise is easy to move. It's embarrassing, at least for me, to have to ask the people who work in the store to move things for me. I suppose they would rather move things than lose a customer, but I don't like asking.

I sure would like people to spend one full day in a wheelchair just to see what it's like. You'll never take walking for granted again. It just makes everything more difficult. And doctors should have to spend 24 hours in a hospital just to see what that's like: no privacy, people in and out at all hours, strangers poking and prodding at me, and people getting personal enough with me that they really ought to at least buy me dinner! But that's a rant (ahem, I mean post) for another day.

Thursday, May 7, 2009

Invisible Disabilities - the double edged sword

I have an incredibly painful, debilitating disease that is completely invisible from the outside. That is a real double-edged sword. I don't want people to feel sorry for me, so I'm glad that it doesn't show. And yet, coping with pain is so absolutely exhausting, I wonder if people around me understand that the exhaustion and mental fatigue are as likely to hold me back as the pain. It's a weird dichotomy - I try to smile my way through the pain so that people aren't aware of how much I hurt, but then I feel bad when my friends don't understand that I cannot do a lot of things, and that I might cancel plans at the last minute if it's a bad day. And it's not just the pain.

For some reason, and I have no idea what it is, nor do doctors, RSD sufferers (and I believe people with chronic pain in general) tend to hurt more at night. I don't know if it's a barometric pressure thing, or what, but the pain is much more intense when the sun goes down. So I don't sleep more than a couple of hours at a time at night. I take a long time to meditate outside the pain in order to get to sleep, then, when I move in my sleep, the pain wakes me up. Alternatively, if I don't move, I wake up because my muscles are so stiff and cramped. Then it will take me a couple of hours to fall asleep again. Consequently, I get my best sleep in the morning, from about 8am until about noon.

Well, when you tell people that you sleep until noon, they laugh at you. I feel like a teenager again, sleeping all morning. Also, I can't get much done. Business hours are from 8am to 5pm; companies don't care that I'm sick and can't do anything in the mornings. The people closest to me know not to call me or make plans with me before noon, but it's very embarrassing to tell new people. I feel like I have to go into details and fully explain my medical history to get them to understand that I'm not lazy. I don't want people to pity me, but I sure don't want them thinking that I'm lazy either.

Also, because my sleep pattern has been disrupted for so many years, I deal with constant fatigue and all the symptoms that go with it. Add all of the strong medications that I take, and what I have is a body that just cannot do all of the things that I want to do. I have the intense pain, I'm tired and lethargic with no energy at all, I'm nauseous and have horrible migraine headaches, and, probably scariest of all, I have short term memory problems. I don't know why I'm embarrassed about that, but I am. Nobody wants to think that their mind is going. And still, none of these symptoms show from the outside.

So I'm left with: do I wear my illness on my sleeve so that everyone will understand, or do I smile and laugh my way through life and put a brave face on, but then live with some humiliation? For me (and everyone is different and will make different choices) my best option is to do as much as I can, and do it with a smile. I don't want those around me to constantly see my struggle.

It may have been best said by Wayne and Sherri Connell in their pamphlet "But You Look Good!":

People living with chronic conditions do not want to give up! They make efforts to laugh, smile, look their best and enjoy life, even though they know they will pay dearly for it. Because of this, we should not confuse their endeavors to live life and be positive, with assuming they are feeling well or doing better. Instead, let us commend them for their incredible courage, perseverance and persistence that make their illnesses and injuries seem invisible to us.

Wednesday, May 6, 2009

There but for the Grace of God go I.

I am in a lot of pain lately. Spring in TX yields such changeable weather, my pain is off the charts!! And I'm sick of it. I'm sick and tired of being sick and tired. It takes all my energy to deal with the pain, I have nothing left to actually do anything. I'm cooped up in my house in agony, feeling very sorry for myself. Just the recipe for a lesson from the Universe.

I try to be a part of support groups - for RSD and for chronic pain. I have been to the bottom, and I have clawed my way up to where I am now. I've learned a lot on my journey, and I desperately want to help people NOT see the bottom of the dark pit of depression that I saw.

I just visited, a terrific website on RSD, and the first thing I see is the on-line chat group for teens with RSD. TEENS: children who have barely started their life yet! And they have RSD? Okay, I was only 29 when I got RSD, but I had at least finished school, gotten a job, had an apartment, I was "out on my own" and doing what I wanted. It was the time of my life, I was earning my own money and having fun. And I still had a hell of a time when RSD took all of that from me. How do you cope when you haven't gotten to do anything yet? It seems so horribly unfair. Perhaps ignorance is bliss, you can't miss what you never had.

I'm friends with a gal whose 12-year-old daughter has RSD. She misses so much school because of her pain that she can't pass out of her grade. Who knows if she'll ever be able to graduate High School. Without a cure for this monster, she certainly won't walk across a stage to get her diploma. I got to do all that. She's in so much pain that she doesn't go to any school events - I did. There are days when I am in so much pain I can just barely cope. I have to decide if I'm going to brush my teeth or fix my hair, because I don't have the strength or energy to do both. And I lay in bed and cry at how unfair it is. But I got to be 12! I got to be a young adult; I got to have all that time.

And imagine her mother. My mother hurts because she sees me struggle and there's nothing she can do about it. Imagine the mother of a 12-year-old watching her daughter cry out for help, and not having anything for her. That seems to be the definition of unfair.

It reminds me to be grateful for what I have. I got a rotten hand of cards, no doubt, but I got to live a lot too. So as I wallow in self-pity (admittedly less than I was before) I still remember "There but for the Grace of God go I."

Tuesday, May 5, 2009

Fear is debilitating

I have been having a lot of pain in my right elbow, going down my arm. My RSD pain is generally in my legs, back, and joints, but this amount of right elbow pain is new for me. My hand is on fire, I can't move my hand without making strange noises because the pain is that bad. It's enough that I'm having trouble typing, and (you'll all laugh at this) I can't push my own wheelchair - I'm forced to ask for help.

Okay, I've had new pains before, this is nothing special. The problem is the fear. Every time I experience a new pain, especially if it lasts for more than just a couple of days, I'm sure it's the RSD progressing, and this pain will never go away. Once you have a degenerative disease, you can't just pull a muscle or sprain an ankle. Everything is "oh my goodness, my [insert degenerative disease here] is getting worse again, my ___ hurts." Then the 'whatever was hurting' starts feeling better and I realize that I panicked for no reason. That fear is just so difficult to overcome.

I have heard people with Multiple Sclerosis say the same type thing. Every time they have a flare up, they're sure that this is the time that the MS won't go away - it won't be remitting anymore. Then the symptoms ease, and they realized that they were paralyzed by fear, not MS.

But how do I stop doing that? How do I stop feeling every new ache and pain so acutely, and getting terrified by it? Some of the aches and pains didn't go away; I was right, the RSD had spread, and the new pain was mine to keep. But many more times, it was a simple "I guess I'm not as young as I used to be" pain, and it went away in several days. And yet, now I get a toothache and I'm sure my mouth will hurt forever. It's the fear; fear is absolutely debilitating.

I also find myself being scared whenever a loved one has to have surgery. My mother-in-law has had several joint replacements, and my husband had multiple surgical procedures after his racquetball debacle (see "Seeing pain from the outside." 4/27/09), and I was afraid each time that they would get RSD. Forget that RSD is rare, and that many people have surgery every day and don't get it, I'm afraid anyway.

One of these days I'll get a handle on my fear. Mostly I fear my pain, it's so intense and so crippling. But I don't want my fear to hold me back. I need to learn to assume that an ache or pain will go away rather than the opposite, and I need to accept the pain I already have and stop being so afraid. Any thoughts?

Monday, May 4, 2009

Handicapped parking spaces

Okay, I don't want to rant often in this blog, but I just have to share something. I went out tonight, and as I got to my destination, I looked for a handicapped parking space. Well what do you know? There's a delivery truck parked across 2 handicapped spots. So I kindly (I always start with kindness - my mom taught me that you catch more flies with honey than you do with vinegar) mentioned that he was blocking 2 handicapped spots, and he had the nerve to look at me in my wheelchair and say "I have to make my deliveries ma'am. If I had to wait for a parking space, I wouldn't be able to make all of my deliveries." Is he kidding? I told him that that really didn't matter, he wasn't allowed to park in handicapped spots. He could not have cared less what I had to say.

Later, I went to a movie. The theater I like has one of those nice big, single bathrooms for families or handicapped folks. I went to go to that ladies room, and there was a gaggle of teenage girls in there brushing their hair. Okay, they don't know better (although John said they should have), so I went to the regular ladies room. This theater actually has 2 handicapped stalls. Those of us with wheelchairs do not fit in the smaller stalls, the wheelchairs are too wide and too deep. One of the handicapped stalls was out of order, so I went to the other one. The only other person in the bathroom was in that stall!! Was the Universe out to get me tonight? Unfortunately, no! More often than not, there are people in the handicapped stalls in ladies' rooms, even when other stalls are available. I get it, they're bigger. And to people's credit, the ladies generally apologize when they come out of the stall and see me waiting. But really!!

People, of course the handicapped amenities are easier, that's the point! Of course the bathroom stalls are bigger and the parking spaces are closer. DUH! And people parked in handicapped parking spaces inevitably say, "I was only going to be a minute." Yes, and you cost me an extra half hour and more pain because I had to park across the lot. Nice one! I really wish the police departments would allow handicapped folks to write tickets to people who are illegally parked in the spaces. We are the ones being inconvenienced, we are the ones with a vested interest in keeping those spaces clear.

Okay, so that would cure the problem of people parked in the spaces who don't have the placard or the plate. But what about the people who do have the placard, then go hopping out of their car and jogging into the store? I personally have a friend who carries his mother's handicapped placard in his car for when he drives her around. The problem is, he sees nothing wrong with using the placard when mom is NOT in the car. Clearly where he has to go is more important than where the disabled have to go. I have asked him about it, and he generally laughs and says something like "I know, isn't it great!" He just doesn't get it. We aren't friends anymore, that just seems so disrespectful.

But you have to be really careful about asking people with placards if they really are disabled. People do have a right to privacy after all. They might have a heart condition which prohibits them from walking distances. Or, many people with enough pain to be seriously limited, but not in a wheelchair, should be able to get tags. As I say, it's a shame that painful areas don't turn green, then at least people would know.

Sometimes I will ask someone who appears fine but is parking in a handicapped spot if they realize that they are in a handicapped space. I figure that's hint enough to the non-disabled, without being intrusive. But that backfired on me at the mall once. A gal hopped out of her car, briskly walking toward the mall. I said "excuse me, do you know you're parked in a handicapped parking space?" Well, the Universe got me again, she looked at me in my wheelchair and (honest to goodness - I couldn't make this up) said "oh, thank you for reminding me. I almost forgot to put my blue thingy up. It's my mom's, but she says I can use it." Like somehow her mom had the power to allow her to break the law. But what could I say? I was frankly so flabbergasted, I couldn't say anything.

I really don't think people are being mean, they're just oblivious! People just don't think. Like I have said before, I get to see people behaving well it's just when they stop thinking that they do something stupid. So think people!

Okay, end of rant. Feel free to join in the discussion.

Sunday, May 3, 2009

Pain Medication

I was talking with someone today who said that her doctor gave her a prescription for Vicoden, 4 times a day, but that she didn't want to take it, "she could just tough it out." I didn't understand that at all, and yet here I am not wanting to be pushed in my wheelchair. Are we all a stubborn lot? Do we all have this feeling that we have to prove something to somebody? Here I am trying to prove that I'm independent, and yet I'm making funny faces at the logic of not taking pain medication because somehow that equates to "giving in." If the doctor can give you pills that will help you feel better, then why wouldn't you take them? I understand if you don't want to take them because you experience negative side effects. That makes sense to me; the side effects from some of the medications I take are quite harsh and hard to bear. But not taking them just to prove that you can handle it yourself, that just seems silly to me. Next time you have a root canal, are you going to skip the Novocaine and just tough it out? I don't really even understand natural childbirth. It seems to me, if an epidural is safe for both mother and baby, and eliminates pain, why wouldn't you use that tool? If there was something that could eliminate my pain, I certainly would go for it. I don't understand accepting pain to prove that you are tough.

I have also heard people say that they don't want to take pain medicine because they are afraid of becoming addicted. I understand this a little better, I sometimes feel like a junkie. But this really is wrong too. There is a difference between taking pain medication to fight pain, and taking it to "get high." Studies have shown that if you truly are taking the medication to alleviate pain, you won't become addicted. I know for me, I am certainly physically dependent on opiates. If I suddenly were to stop taking them, I would go through withdrawal. That's a fact. I have been taking 40mg of Methadone per day (the maximum dose for me) for many years now. But I have never taken an extra pill, and I have no desire to do so. They don't make me "high," although they did in the beginning.

I was actually afraid of the narcotics because I know I have an addictive personality. I had a cigarette in High School just to be "cool," and was hooked for years. I finally quit for 3 years, then had one figuring I could be a social smoker, and I was hooked again, almost instantly. I have since quit (10 years ago in fact), but it was one of the hardest things I ever did.

The first time I took narcotics for pain (after the first surgery - so many years ago) it took away the pain alright, and left my head spinning. I remember kissing the bottle of pills and thanking them. By the time the pain was back and it was time for another pill, I was really afraid to take it. I know my own history just with cigarettes. I've never done any kind of recreational drugs because I was always so afraid of becoming addicted. It took my doctor explaining the difference between addiction and dependence before I would take another pill. And there really is a difference. I have NEVER taken a pill seeking that "high." In fact, I have been on them for so long now, I don't get that feeling anymore. I have never shown any "drug-seeking behavior," as my doctor calls it. Dependence is a physical thing, drug addiction involves psychological aspects as well.

If the pills help you feel better, take them! It doesn't make you weak because you can't manage your pain. Pain is a beast! And if you are honest with yourself, and take the pills for the right reasons, you aren't a junkie either. My body is physically dependent on narcotics, and I have to manage that, but it's not the same as a drug addiction.

Saturday, May 2, 2009

More about wheelchairs.

I got a couple of really good responses to my wheelchair post, and I wanted to respond with a regular post rather than in the comment section. (If you have not read that post, please go back 2 posts and read "Wheelchairs are a pain," and read the comments to that post as well.) I need to explain better about the motorized wheelchair dilemma. I said that I don't like being pushed in my chair, I'm too pig-headed. For the same reasons, I don't want a motorized wheelchair - it's like giving in and admitting that I can't do it myself. There's also a lot more to it.

I have gone to wheelchair stores with the intention of buying a scooter. What I want is a motorized scooter that I can manage myself. I have to be able to get it in and out of my car myself, or else it's not better than my manual chair. There are great scooters available that I would love to have. But herein lies the problem - and I guarantee you won't believe this one! I am on disability, so I have Medicare insurance. Well, Medicare considers those nice, handy, small scooters toys, not assistance devices for the disabled. Medicare will not pay for a toy!

What Medicare will cover is the motorized wheelchairs. There are exactly NONE of those that I can manage myself, and precisely NONE of those that will fit in my trunk. I would have to get a van to be able to use it, or have a lift put on my car. Now, assuming that my car can handle a lift on the back (and many can't - the lifts are quite heavy and require intensive modifications to the car), it will cost $10,000 to $15,000 to get one. And Medicare might cover 80% of it! Might? What do you mean might? Nobody seems to be able to tell me for sure, until I have the work done and submit the bills. No thank you!

And that's for the motorized wheelchair that I don't want! I want the much cheaper toy, but they won't cover that!! Okay, I could just buy one myself, but so far, if I'm going to spend my money on it, the one that I really want doesn't quite exist yet. I need the battery section to get a bit lighter so that I can lift it into the trunk or back seat of my car myself. The beauty of the manual wheelchair is that, at least with the ultra-lights, which is what I have, I really can manage it myself. I want an assistive device that allows me to be independent. If I can't get it in and out of the car myself, it's not better than my manual chair.

What I really want is the type of scooter that Matt Rolloff has in the TLC show "Little People, Big World." I've watched his son get it in and out of their vehicles, perhaps I could manage it too. I suppose I could probably look into it and find out what type it is. Again, Medicare will not pay for it, but at least I could learn more about it, then see if Medicare changes their rules about what they consider a toy. I don't know, I think I just stand in my own way. I like popping wheelies in my manual chair, and looking independent. It's ridiculous really, that I'm more concerned with my image than my comfort and pain. I really am working on that. And as part of that work, I am going to look into scooters again. I promise. I'll keep you updated.

I missed a few days, sorry.

When I first started this blog, it was with the intention of posting every day. Then my nephew went and had his 5th birthday party. I made the cake, a big beach ball cake; another hobby I have picked up since becoming disabled. I love making and decorating cakes. Then I attended the party (of course) with a bunch of very cute kids! It was a blast, but it sure took a lot out of me.

So, now I'm back - sorry about the 2 missed days. I'm sure you understand.