Just when I need my friends/family the most, I get reclusive.

Hello all. I know it's been a really long time. I started this blog with the hope of finding people who are on this crappy chronic pain journey, and helping them through it. I don't know why I thought I was suddenly the teacher and not the student. There is always more to learn. Perhaps if I share the downs with the ups, it will help even more. Because I'm in a real down right now.

As I've mentioned, most of my pain is centered in my back and legs. All of my joints hurt, but it's mainly the lower body. So I blab on and on about never taking your legs for granted. Well, about 6 months ago, My right elbow started hurting A LOT. The pain progressively got worse and worse, as I chalked it up to RSD spreading again and making me miserable. But this was different, this was my arm. What does someone confined to a wheelchair do when they lose the use of their arm? Damned if I know! So I panicked. If in doubt, roll up in a little ball and cry in fear and frustration.

Okay, I'm done doing that now. I didn't get much accomplished, but I do feel better now, so maybe I needed that. And what's crazy is that, really, my arm pain turned out to be good news. It turns out that my ulnar nerve is compressed in my elbow. It isn't the RSD (yet) causing all of this pain and numbness. That's great, because then it can be fixed! I go in for surgery on August 5th. There's the rub for me. I'M JUST SO SICK OF SURGERY!!

When I first started out, I could tell you every operation, every procedure, every medication. 16 years later, it all just blurs together into a big, long mess of pain and disappointment. I lost count of surgical procedures after about 30 .... I'm just so done. And yet, I feel like every time "they" run another test, "they" find something else wrong that has to be fixed - by cutting me open AGAIN. "Just close with zippers or Velcro for crying out loud. You know you're going to open it again anyway. Ziploc gets it done!" Surgery sucks. During my depression years, when I was so sick, I was in and out of the hospital so much - including one 5 week long stay - that I would get physically sick to my stomach just driving past the hospital. It really is miserable.

Well, I pulled myself together, realized how much attitude had to do with healing and being "healthy," and I haven't been hospitalized in a long time. Well, with one little operation pending, all of that crap comes right back up again. Here I am, the tough kid who's been doing this for 16 years, who has enough answers that I start a blog to help "newbies," and the thought of another operation can send me tumbling right down again. Lesson learned - just when you think you have it all under control, life hands you another curve ball. But ... I'll get through this too. I will!!

And why is it that when I take a fall, instead of reaching out to my friends/family/loved ones for the support they want to offer, I get reclusive? Why do I do that? Do any of you all do that too? I brag about having some wonderful friends who I know I can turn to, and yet, when I need to vent and cry and be really really scared, I do all of that alone.

Oh well, there it is.

Have you tried .... ?

One of these days I am going to post a FAQ page on this blog. There are just some questions that I hear so often. And really, I don't mind the questions; I understand that humans are basically a curious animal by nature. I never want to be that "angry crippled girl" who makes everyone uncomfortable. But sometimes, just sometimes, I want to have a brochure handy for those often asked questions.

First of all, I'm dealing with a disease that most people have never heard of. People see me in a wheelchair, or they see my pretty-unusual-scar (to put it nicely), and people want to ask "What happened?" But I don't have a cool story. If I could just say "car accident," or better, "helicopter accident," that would be cool. But my story isn't anywhere near that cool! So I explain as best and briefly as I can (depending of course on who asked - inevitably it's employees of restaurants and grocery stores).

The second question is generally, "Have you tried .... ?" I don't mind hearing about any type of treatment for pain that anybody wants to tell me about, really I don't. At this point, I will try just about anything short of hanging upside down over a vat of boiling oil. In fact, there are some days when the pain is so excruciating, and I just can't take it anymore, that I might even try that. There are a lot of Eastern practices that have value, and I certainly don't know about all of them, so bring on the information. I've tried acupuncture, acupressure, massage, hot paraffin, vitamins and oils, supplements and herbs. As long as it can't hurt me any more than I already hurt (I hope), why not give it a try?

But really, some people ask the silliest things. I am seeing one of the leading specialists in RSD, pharmacology, and pain management. I see a leading neurosurgeon. I have been to a lot of hospitals and pain clinics. I have tried temporary and permanent epidural catheters; I have had multiple TENS units and an implanted spinal cord stimulator; I've had local, regional, nerve, and nerve bundle blocks; I have done more drug studies than you can poke a stick at; I have had so many procedures and surgeries that I have quite literally lost count; I have had discs fused and nerve conduction studies; I have tried all of the opiates and other medications available (my pain management specialist has a second degree in pharmacology - he knows his drugs); I have had an implanted, intrathecal (1 level below epidural - closer to directly on the spinal cord) pain pump; I was chemically paralyzed for 3 days to try things like continuous positive movement devices, local blocks, and who knows what all; I have been through rigorous and horrifically painful physical therapy; and I'm sure there is more that I have forgotten than that I can remember. I've tried it.

Don't you think that if it was as easy as "eat more leafy green vegetables," that one of my many doctors would have thought of that? I really don't mean to disparage, I appreciate advice - you never know, there may be something new or something I haven't heard of. With the amount of pain I live with each and every day, there isn't much that I wouldn't try just to get one day outside of my personal torture chamber, just one day of relief. But really, "Get more sunshine and vitamin D?" You're stopping me in the streets to ask if I've tried mega doses of vitamin C? Really??

I know people are trying to help, and I appreciate that, but it really does get difficult to listen with a smile when you know what's coming. Please don't get me wrong, this is my issue, not the person who's asking the question's. When somebody asks me questions or offers advice, they are generally doing it with the best of intentions. There's no malice intended; they don't know what I have been through, they can't know all that I have tried and how long this has been going on. I truly believe that people mean well and just want to help. It's my issue that it's been so long and so horrible that, by now, I've tried it all.

I guess it comes down to: While I'm tired of answering the same questions, I never want people to stop asking, or to stop offering advice. Maybe the questions suck because I know that there aren't any good answers. I'm reasonably sure that when someone starts with "Have you tried .... ?" that the answer will be "Yes, I've tried that, and it didn't help." Not that I would ever say that outloud, I never want to hurt anybody's feelings, especially when they've gone out of their way to try to help; but in my head, I know that there just aren't anymore answers right now, and I HATE that. My doctor has emptied his bag of tricks, and I'm still in more pain than I know what to do with.

But who knows, maybe the next person who asks "Have you tried .... ?" will have something new, and maybe it will help. So bring it on!

And keep watching, I am going to post that FAQ.

The isolation of disability

When I first got hurt/sick almost 20 years ago now (wow, has it been that long?), I had a lot of friends. I had a group of people that I shot pool with, I had a group of people that I did aerobics and played volleyball with, I had another group that I just went out with and partied and did 25-year-old stuff with. I had a good amount of friends.

Then I started down this road of disease, surgery, chronic pain, doctors, yadda yadda yadda. Well, honestly, what 25-year-old who doesn't have to, wants to travel down that road? As I stopped doing the activities that I used to do, the friends that I did them with started dropping away. And it's very difficult to make new friends from the hospital or my bedroom. I spent so much time in the hospital and in bed that many of my friends just drifted away. It's nothing against the friends that I had, I wouldn't have wanted to hang around inside (and certainly not in hospitals) if I had any choice in the matter. Plus, I was going through a pretty awful depression, trying to find a way to carve out a life that I didn't want any part of. I was angry, and not terribly good company for a few years.

But that isolation certainly wasn't helping the depression. It became a really ugly vicious cycle of depression and isolation and more depression until, as I've mentioned, suicide became a real option that I had put on the table. I was sick, in a tremendous amount of pain that I didn't know how to deal with, and now I had no friends either. It was truly a recipe for disaster. If only the Internet, as it is today, existed when I was sick and feeling so isolated. That's most of why I am doing this blog; so nobody has to feel so isolated when they are at their most desperate. I understand the desperation of chronic pain. I was (and still am) so sick and tired of being sick and tired.

But as I look back, I realize that I created a lot of the isolation. Why is it that when we are hurting and need our friends the most, we isolate ourselves? I don't think that's just me; I've talked to other people who say the same thing. On my worst days, when I'm hurting the most, and in the least amount of control over my pain, I turn inward and don't want to talk to anyone. Perhaps my friends didn't drift away, maybe I pushed them away.

I have recently had reason to look back at some friends from a long time ago in need. And boy have they been there for me. As I have mentioned in this blog, Medicare is a funny (read: ridiculous, stupid, annoying, belittling, poorly run [got the picture?]) thing. They will not pay for me to have a manual wheelchair and a scooter. They figure that if I can still work a manual wheelchair, I don't need a scooter. So, because I don't want to give in, I only want the scooter for long distances and want to try to keep my arm strength as long as I can by pushing my own manual chair for shorter distances, I get penalized. Wow, brilliant system.

I love my manual wheelchair: it's light-weight with air-filled tires and cambered wheels. It's so light-weight that I can actually get it in and out of my car almost by myself (with just a little help getting it back in). I don't want to give that up! I want to use my manual chair as long as I possibly can. But I really need a scooter also so that I can go on longer outings. I can't go grocery shopping in my manual chair, I can't go out for a day to a fair or whatever in my manual chair, there's a lot that I just cannot do with it. But there's a lot that I can do with it. I don't want to give it up, but the scooters are about $2,000 all in, and I sure can't afford that. Before you think, "let Medicare buy a scooter, and buy your own manual chair," the type of manual chair I use also runs about $2,000, and I already have the one that I want.

Anyway, I was talking to an old friend about it, and she turned to my High School graduating class and others, and took up a donation for me. I was thinking she would raise about $1.37, but if she wanted to do it, I figured: go for it, I'll take $1.37. That and about $2,000 will get me my scooter.

Amazingly, she raised a lot more than that, nearly the whole thing!!! Understand that in High School, I felt like a self-conscious nerd with very few friends. And all of a sudden, many years later, they have been there for me in spades!! I am so touched and so grateful, I can't even find words to express it. How do you say thank you to people for giving you your independence? There is so much that I cannot do; with a scooter, there will be fewer things on that list. It's amazing really!!

To all of you who have contributed, thank you. It seems like a very small way to say how much I appreciate such a huge thing, but I don't know what else to say.

It's been a lesson to me too. I've learned that friends are still there, I just need to turn to them on occasion. I'm so fiercely independent that I find it difficult to ask for, and accept help. I'm just not good at it. Yet, if I don't ask, people just don't know what to do. It's hard to watch someone you care about hurt so much and know that there's nothing you can do about it. People want to help, but there's not much that anyone can do. When there is something that can be done, those friends are there. THANK YOU! Truly and from my heart, THANK YOU ALL!!!

Expectations

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.

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.

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:

http://tinyurl.com/4zm38

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.

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.

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, KRLD.com. 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!

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.

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.

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.

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 RSDHope.com, 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."

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?

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.

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.

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.

Wheelchairs are a pain!

It's raining again!!! Not only does this make me hurt more, but it makes it nearly impossible for me to get out. Everything I do in a wheelchair takes me at least twice as long as it would take if I could walk. Plus, with both hands needed to work the sucker (and steer appropriately - which I don't always do), I can't hold an umbrella. I just get soaked. And the wheels pick up all of the dirty water from the ground, and neatly deposit it onto my pants.

I live in Texas now, but I grew up in NY. I went back for a visit one February without thinking it through first. I was not in the wheelchair until I moved to TX, and we don't get snow down here. The trip to NY in snowy weather was a mistake. The shoveled paths were fine for walking, but they weren't wide enough, nor shoveled cleanly enough to accommodate a wheelchair. Plus, if dirty rain water on your pants is gross, try slush on your wheels, then on your hands and pants. And, once a wheelchair is wet, because it's material/leather/whatever else, it stays wet for hours. It's just miserable.

Don't get me wrong, wheelchairs can be a blast. I pop wheelies, I do donuts, I ride up escalators which always makes people gasp, my feet never get tired after a long day at the mall, my shoes last a lot longer than most, I bring my own seat to "standing room only" events, and the ramps, especially the ones in malls with tile floors, you can really pick up some speed on those babies. Weeeeeee!! And riding around with my nephew in my lap is great. Also, I am certainly grateful for my chair; it allows me more freedom than I would have otherwise. All that being said, the thing really is a giant pain.

I had dinner out tonight with my husband. The rain was hard enough that I was soaking wet and cranky as we came in the door of the restaurant. As we were leaving, it was raining even harder than when we walked in. Here I was about to get a really good "grumpy" on, and a man that I didn't know insisted on going to his car, getting his umbrella, coming back to the front door, allowing John and me to borrow the umbrella to get to our car, then waiting at the front door of the restaurant for John and me to drive around and give his umbrella back. As I said a few posts ago ("When life gives you lemons, make lemonade!), I get to see people behaving at their best. It sucks to be in the chair, but it's nice to see people behaving so kindly towards me. I get my faith in human kindness restored on a weekly basis.

Also, wheelchairs make you short. I can't reach the top 2 shelves in stores, I don't do well in crowds because I can't see and I can't be heard from way down there (although, I suppose I could just bowl everybody down, but that wouldn't be nice), and, although places have gotten much more handicapped accessible, there are still a lot of places I can't go. Take one day and notice the steps, the non-paved terrain, the stores crowded with merchandise; it's just a pain.

But, I think beyond all that, I hate my wheelchair for emotional reasons. I just hate the way I look in it. Sure, it's better than the alternative - being stuck in bed simply because I can't get around - and I don't mean to sound ungrateful, but somehow I feel more crippled in the chair. I'm nutty about having to push it myself; I don't like when people see me being pushed in my chair - somehow, that's even more crippled. What's ridiculous is that I think nothing of seeing other people pushed in their chairs, yet I still feel somehow "less than" when I need help. I hate being dependent. I think that must be God's lesson for me in this life: asking for, and accepting help gracefully. I suck at it! My motto is "I can do it myself!" That's all well and good when doing it myself doesn't cause me pain or injury. I'm all for being as independent as possible! But not when I'm gritting my teeth in agony just to push my own wheelchair. And that independence lead to a near disaster with the chair a few years ago.

While my husband had both of his arms in casts (see my earlier post: "Seeing pain from the outside."), we decided to have dinner with some new friends - a wonderful couple who we are now very good friends with. It was our first time out with this couple, so I had to prove how independent I am. We came to the curb to get up on the sidewalk. Instead of asking for help, I decided to pop a wheelie, get my front wheels up on the curb, then lean way forward to pop the back wheels up. Voila, I would be on the sidewalk all by myself, and everyone would know that I'm not crippled, I just can't walk. So silly, I know. Well, I got the front wheels up without incident, then I leaned way forward to pop my back wheels up ..... just at the moment that our new friend decided to help me, and grabbed the handles of the chair and lifted. Do you have the mental picture of this? Me leaning waaaaay forward, and him lifting the back of the chair. Out I went. I landed flat on my face on the sidewalk. I wonder if he was convinced of my independence at that moment!

Luckily I wasn't hurt. The poor man - I thought he was going to die, he felt so bad. Luckily he noticed I was silent on the ground because I was laughing so hard, so everyone joined the laughter, and we're left with a great story. But I'm also left with a lesson. People want to help!!! Why am I so bad at accepting help? Why am I so crazy about showing people how independent I am? Even to my own detriment. It doesn't make me any less of a person that I am disabled, and it doesn't make me any less of a person that I am disabled enough that I need help pushing my wheelchair. I refuse to get a scooter or motorized wheelchair for the same stupid reason: I feel like somehow I look more crippled in it. It's ridiculous!!! My head understands that, but my heart, my soul, my gut remain unconvinced. I'm working on it.

But I'm still in pain ...

I have been spending a lot of time online looking for different websites about chronic pain to add to this blog. At every website, I find similar posts that read something like "I have [insert pain disorder] and have been taking medications, doing my exercises, doing everything the doctor recommends, and I still hurt." I can't tell you how many times I have read this post; and I can't tell you how many times I said this myself - to anyone who would listen.

About 4 or 5 years ago, I had a real epiphany on this topic. It was one of those ah-ha moments that really stuck with me. It occurred to me that "pain management" didn't mean that the doctor was going to get me to "pain free." I realized I was never going to achieve "pain free," what I was striving for was a level of pain that I could live with.

That was huge for me. I kept saying "but I still hurt," and my doctor would say "of course you hurt, you have RSD." He would send me to physical therapists and psychotherapists which I didn't understand. I thought, I'm not crazy, I hurt. Then I would assume that he was sending me to a psychologist because he didn't believe me about my pain. And I see a lot of people on these groups making the same leap. "My doctor wants me to see a psychologist. He obviously thinks my pain is all in my head." NO! He is sending you to a psychologist because he knows that you have an IMMENSE job in front of you: learning to live with pain. My doctor understood that he couldn't fix my pain; I was the one choosing not to understand that. I would say, "I don't need a psychologist, I need more pain relief!" What he was telling me, in so many words, was "I have nothing else for you, you need to find a way to cope with what you now have." That's difficult to accept, so I didn't; I continued to misunderstand and say "but I still hurt!"

It is something that nobody wants to accept. Nobody wants to hear their doctor say, "You have a disease that I can't cure, and I can't relieve the pain." I sure didn't want to accept that. I kept saying "but you don't understand." What he was trying to say is "no, you don't understand." Now I understand. Pain management means finding ways to cope with a life full of pain. Meditation, psychotherapy, yoga, whatever it takes to help stay on top of the pain.

I suppose that's what I am trying to do with this blog: give people tools (hobbies, pets, friends, etc.) to cope with the pain that is now their constant companion. In many cases, your doctor doesn't have the magic pill that you so desperately want. That is a devastating thing to take in, so many of us choose not to hear it at all. But we have to understand it to start moving forward. You can spend your whole life in bed, moving as little as possible to try to minimize your pain (and probably still hurt anyway), or you can understand the goal of pain management which is to find a way to live with pain. To accept that you will hurt, and carve out a life for yourself anyway. It's not easy, but it's much more worthwhile.

Seeing pain from the outside.

My "other half" John (heretofore called husband) had a ridiculous accident about 3 years ago, and we both learned so much from it. He managed to break both arms playing racquetball! Yes, both of them!! I won't go into the details of how, needless to say, he's not allowed to play racket sports anymore.

He was in the hospital having a cast placed on his badly broken left arm when a nurse walked in and said "oh, by the way, you broke the right arm too." WHAT?!? By the way? That changes everything. Think about it ... what can you do with 2 broken arms? Nothing! And me in my wheelchair with him with casts on both arms - we looked ridiculous. The running joke was "What has 2 arms, 2 legs, and 2 heads?" The answer: The 2 of us at that time.

We had a couple of months of recovery time to figure out how to handle this. But we handled it. We may have looked strange, and some things may not have been done up to our standards (we had a lot of delivered food, and the house wasn't so tidy), but we managed.

Most interesting was the role-reversal. I was used to being the patient, the person in pain; he was used to being the care-giver, the person on the outside being frustrated that he couldn't do more. I learned just how very frustrating it is to watch someone you love hurt. I would have done anything to take his pain away. He had many excruciating procedures to fix the left arm, and I would be reduced to tears every time they manually manipulated it. His face would turn purple and he would try not to scream out in pain. It was a horrible thing to watch. I have never felt so helpless in my life. I had never felt the pain from that side before.

He learned how frightening it is to be facing a painful procedure. He learned the exhaustion of being in pain all the time. He learned the frustration of pain medication that doesn't take all the pain away, but gives you terrible side effects. We each saw pain from the other person's view point for the first time. It was truly an eye-opening experience.

From that, I learned how difficult it must be for my loved ones to see me in pain. How must my mother feel? She's the mommy, she's supposed to kiss my boo boos and have them be all better. How must my husband feel when I cry and writhe in pain and there's absolutely nothing he can do? He's there by my side, holding my hand and saying sweet things to me which helps a lot, but he can't take the pain away. How must anyone who cares about me feel when I'm having a bad day? It's an incredibly frustrating thing.

It just proves that chronic pain affects so many people. You don't have to be the one with the pain to suffer. So here's a nod out to all of the people who watch people that they love suffer with chronic pain. You are appreciated, and, at least by me, you are more understood. Thank you.

And know that just by sticking around, you are stronger than many. I lost a few friends at the beginning of all of this. They had varying reasons for pulling away from me, but I know it was because they just couldn't handle it. I was angry at the time, I thought that was very cowardly. After all, I was the one in pain, not them. Now I have learned that that's not really true. It is very painful to watch from the outside. I have learned to really appreciate my friends who tough it out. And I hope they know how very much they mean to me, and how very much they do for me just by being there. When I'm having a really bad day, I know that nobody can take away the pain - if I can't do anything to ease my pain, and the doctors can't do anything to ease my pain, I don't expect my friends to. Just being there, maybe rubbing my back, saying sweet words ... that does more than I can say. And I know that I'll have friends around for my next good day, and we can go play. If they can be there for the bad days, then the good days are a cake walk!

Thank you all.

It's easy to believe in God when life is going well.

I have found myself, since getting RSD, having a serious crisis of faith. I have always been somewhat of an Agnostic (drifting toward paganism if it must be defined), with sort of a sketchy idea of who I thought God was. Since becoming injured, and living in such pain, I'm not sure what to think about God. If God is so good and so powerful, and loves us so much, why does he allow suffering? Not just my suffering, but any suffering. It seems to me that if God could end suffering, then He's a bit mean-spirited if he doesn't. If He knows I'm on the brink of survival, hanging on to my last thread of coping, why doesn't He help me?

I've been told that "God never gives you more than you can handle." I'm not sure I buy that. Sure, that's nice in theory, but He has sure given some of us a heck of a lot more than others. And how do you account for the suicides from chronic pain? There are clearly, well-documented cases of people suffering from horrendous pain, taking their own life because they just could not cope. So God did give them more than they could handle.

Okay, I've also been told that "there's a bigger plan, we just can't see it." Well, that seems very convenient. If that's the case, and it was preordained that I would suffer, then what's the point of all of my fighting. Why battle disease if it's inevitable.

I've been told that "if I just prayed to the right God, He would help." Oh, nice one. Put the burden of my suffering square on my shoulders. That sounds like the doctors who, when they run out of ideas, blame the patient. Essentially, it's my fault. Well that's an awful small and petty God too. He could help me, but He has chosen not to because I worship Him by a different name.

Then there's "God doesn't catch every falling sparrow." The Universe is too big for God to deal with the small things. Sometimes people just have to suffer. Then why pray at all? And certainly, why do we pray at a child's football game? Why do we pray for good grades in school? These things sure seem smaller than suffering. And why can't God answer every call anyway? If He's all-knowing and all-powerful, then how can he be too busy to answer even the smallest prayer. "God doesn't catch every falling sparrow" sure sounds like "He can't do it all - There are limits to God's power" to me.

I keep getting back to, if there is a God, and he loves us so much and wants us to come to him when we are suffering, why doesn't He intervene? Why can't He give me the one day off that I've been asking for for years? I just need one day to catch my breath and get back on top of this pain. One day to remind me what it was like to live pain free. It's been so long now that I don't even remember what it was like to feel well. To be able to just run out to the store for something - now it's an ordeal of wheelchairs and crutches. Or to be able to take my nephew to the zoo? Is it too much to ask for for just one day? Apparently it is. Because I have been asking for years, and so far, nothing. Either He can't or he won't. which is it?

But more to the point, how do I keep believing in a God who has left me here? He sees all, He knows all .... then he knows my crisis. Is he incapable of helping, or is he choosing not to? I'm not sure it matters, either of those lessens God in my view.

I haven't said any of the above to be inflammatory. Believe me, the last thing I need or want is to make people angry. I say it because it is a true crisis of faith. God was very easy to believe in when things were going well. Now, when I need Him the most, I have so many unanswered, and unanswerable, questions.

Boredome yields depression!

I am knitting a baby afghan today. Who cares? What does that have to do with chronic pain? I used to be a cheerleader and a gymnast. I used to play volleyball, I roller skated, and I loved to go skiing!! Wow, I really miss skiing.

All of a sudden, I couldn't do any of those things anymore. I was left thinking about all of the things I couldn't do, and all of the things I would never get to do. I wasn't married, and now I will never walk down the aisle to my husband-to-be. I will never dance at my wedding, or anywhere else, again. I will never enjoy any of the hobbies that I loved so much.

For a long time, it was all I could think about. I would lie in my bed and cry about how unfair life was. I still had so many things that I hadn't gotten to do yet. It's a huge part of what led to my depression, and held me down for so long. I was bored! I had to make an active choice to look forward, to stop looking back at all of the things I can't do. I had to find new hobbies, and I had to carve out time every day to do them. Sitting around being bored, and thinking what you could be doing "if only...." is a recipe for depression. And once you're down, that boredom will keep you down.

I took up knitting, crocheting, scrap booking, and card making. I make afghans and baby hats, and donate them to charities. I tried art, I read a lot, I have enjoyed listening to old-time radio. I also love to put out lots of types of bird food and watch all of the different birds. It's amazing how long I can spend staring out the window "watching bird TV" as my sister termed it. There are plenty of things I can do. Do I still miss my active hobbies? You bet!! I would love to go skiing again, but it's not going to happen, and I'm okay with that.

How are you?

Well, since I wrote about my second least favorite question yesterday: "What do you do?", I'll write about my #1 hardest question to answer tonight.

"How are you?"

Okay, granted, it depends on who's asking. Your basic person on the street, the answer is "Fine thank you, how are you?" Not so difficult.

But when people who know my situation ask, they are asking a bigger question than that. They want to know what kind of day I'm having. That's great if I'm having a good day, but what do I say when I'm really feeling lousy, but I'm fighting to stay on top of it. Do I lie and say "I'm doing ok," or do I tell the truth and say "lousy, thank you."? I suppose anybody who asks me how I am wants the truth, but I get afraid that if the answer is "lousy" too often, they'll get tired of asking the question. There in lies the issue I suppose. I really want people to care enough to ask, but I'm well aware that nobody wants to hang around with a complainer. Certainly it's one thing to complain for no reason, and another to be just telling the honest truth. But I know that my loved ones really want to hear "I'm doing really well today," or "Much better, thank you." They want me to say that because that's the truth, not just to say it. And goodness knows I want it to be the truth. But more often, that's not the truth. Perhaps the answer is exactly as I said above: "I'm really feeling lousy, but I'm fighting to stay on top of it." Yet I still feel that people will get tired of that answer and stop asking. I'm still afraid of chasing friends away.

Maybe that's how you find out who your true friends are. People who can't deal with the situation will fall by the wayside. I lost a couple of friends shortly after I was diagnosed because they couldn't cope with the changes in what we could and couldn't do, and I think some of them just couldn't cope with my pain. I'm sure the thought of a contemporary having an incurable disease is frightening. It makes you face your own fears and mortality. "There but for the Grace of God go I." Also, in the beginning, I didn't have such a chipper attitude, to say the very least; I'm sure that drove some people away. And I suppose some people might not be able to deal with me canceling plans at the last moment, or sometimes needing extra help. Finally, I know that on my very worst days, I get very reclusive. I don't know why I do that, you'd think that would be when I would need people the most, and yet I've heard a lot of other chronic pain sufferers say the same thing. I just don't want to talk to anyone when I'm in that much pain. I can't imagine making small talk and having to sit up and be polite when I am working hard just to maintain horrendous. Plus, on my worst days, I get angry about it.

I think, once again, I've come back to my own insecurities. I get so tired of feeling lousy that I assume my friends will get tired of me feeling lousy. I am so sick and tired of being sick and tired! I have absolutely no patience for my pain anymore, so I fear that my friends are sick of it too. I know a friend is supposed to be around in good times and bad, but this seems like a lot to ask of people. And yet, I wouldn't hesitate to be around for my friends if the roles were reversed. I guess I never want to be a burden on my friends. And more so, I'm afraid that if I am a burden, I won't have any friends.

So much for not being ruled by my fear. I think I have to work on this one. Any thoughts? Are there other chronic pain sufferers who feel like a burden? How do you handle it?

Choosing to do things anyway!

As I said above, I spent yesterday with my soon-to-be five-year-old nephew Luke. He wears me out, but I love it. I love that we are so close (along with my sister and her other 2 kids who I also adore - they are a bit older and don't need babysitting anymore), and I love that my sister can call me for help and I can feel useful for a change by babysitting. As I also said, my sister felt sad that I only thought myself useful on Wednesdays when I babysit. I thought about it, and realized that I haven't come as far as I thought I had on that front.

Let me start with, I love spending the day with Luke, even though I know it's going to hurt. As with doing things with any of my friends, I choose to do things even though I know I will pay for it. It's very liberating to know that I am making that choice. My pain isn't making choices for me, and, more so, my fear of my pain isn't making choices for me! I choose to do something, knowing it will hurt. And generally, it's worth it. I have always thought that "the pain that I earn is better than the pain that I get for no reason." I can sit home, and I will still hurt. Or, I can choose to go out and enjoy time with friends &/or family, and I will hurt, but I will have had a good day. My choice!

But back to the useless thing. When I was first forced to stop working (back in 1994) due to the pain and all of the medications, I felt strange and out of sorts. I felt like people would look at me differently because I didn't have a job - I didn't "do" anything. It wasn't that I defined myself by my job, but I felt like I was supposed to at least have one.

Then, when I got on the tax-payers' payroll (ie started collecting Social Security Disability), I felt even worse about myself. There are so many people who cheat the system, who steal money that they are not entitled to, that it leaves an ugly blemish on those of us who honestly need the help. I feel the stigma of being on Public Assistance. Why? I had a job, I paid my taxes, I did all the right things, and because of something completely out of my control, I was unable to work. Not that I didn't want to work, I was unable. Believe me, I don't think there is a chronic pain sufferer alive who wouldn't trade their "life of leisure" sitting at home in pain, for a job. I would work any job rather than feel the pain that I feel every moment of my life. I almost said "every waking moment," but it's in my sleep too. I have night terrors when I wake up screaming - a blood curdling shriek, my other half would say.

[As an aside, my other half is John. We are not married, but we have lived together for a while. At my age (44) and stage in life, the term boyfriend sounds absolutely ridiculous, leaving me not knowing what to call him. He will be John here, but sometimes I also call him my husband just for terminology sake.]

I would have some dream like I'm being flayed or burned alive, or someone is pulling my leg off. I wake up screaming, and know that it's my pain invading my dreams. I don't even get sleep time off from the pain.

Anyway, when people would ask me "what do you do?" I would shamefully say "I'm on disability." Somehow I felt "less than": less worthy to be in an intellectual conversation, less worthy than all those hard-working folks who were having to support me. John finally made me a sign and hung it in our apartment that said "My job, the one for which the government is paying me, is to take care of myself and get well." He was right of course. My full time job was to manage my pain. And yet, I still didn't know how to answer the question "what do you do?" Why am I still embarrassed to be on public assistance? It's not my fault, nor is it my choice. And yet, the stigma sticks to me. Or do I stick to it? I know I'm too hard on myself, but I still feel less respected because I don't work.

I now answer the question with "I am unable to work" because, somehow it feels better to imply that I can't work, not that I don't want to. But I shouldn't have to justify. I am exactly the type of person that the system was set up for. This is America, we help those less fortunate. That's me: I did it all right and played by all the rules, and now I find myself unable to work. It's not my fault.

Of course, then there's the inevitable follow-up question which is "what's wrong with you?" I work very hard at not "looking sick," at not even looking like I'm in pain. And yet, if I answered the question with "I have cancer," people would say "oh, I'm so sorry," and they would instantly understand. I say "I have RSD," people say "you have what now?" Ok, "I have an incredibly painful nerve disorder for which I take 40mg of Methadone per day, and anti-depressants so that I don't lop off my own head from the pain .... oh, TMI?" Not only is it too much information, but it's intrussive. Why do I have to justify why I'm on disability. I know people are curious, but do they really have a right to know what my health status is? Not that I mind answering questions, I just mind feeling like I have to justify myself. I mind the questions that feel accusatory instead of just curious. Perhaps that's just in my head, along with feeling useless just because I'm not out there doing something to earn my keep.

My job is to maintain my health as best I can, and manage my pain. That's it! Now I just have to believe it.

A day with Luke!

Well, I promised to try to write every day, but what I'm writing today is a "come see me tomorrow" post. I spent the day with my nephew Luke today. He is about to turn 5 years old, and he wears me out and makes me feel great about myself all at once. I am completely exhausted and in a tremendous amount of pain, but I feel like I did something really rewarding and helpful today. It's worth it!! But I've learned a lot on this topic too that I really want to share, so I will discuss tomorrow.

Preview: I feel useful today because I babysat and helped my sister ..... but does that mean that I feel useless all other days? I babysat last Wednesday also, and I told my sister how good I felt about myself; she thought that was sad because it meant that I didn't feel worthy somehow on other days. She's right, I shouldn't feel that way. More tomorrow!

The importance of pets!

Hello all. As I hope this will become a place of sharing ideas, here's one from me. Please join in and write your own.

I counsel folks to have a pet. Even if all you can handle right now is a goldfish, have something to care for. Since my diagnosis with a very painful, incurable nerve disorder, I have always had a pet. Actually, the first pet, an adorable, very needy, 8-pound-toy poodle named Gizmo, came shortly after my diagnosis. My sister Elizabeth helped me pick him out from the Coppell Humane Society, and, as she is very fond of reminding me, I then called her at 3:00am in a blind panic. I said "I can't even take care of myself, how am I going to take care of a dog?"

She talked me down that night, bless her very sleepy heart, and I had Gizmo for 14 years. He has since passed, but he was one of the most important parts of my life during the bleak years. He would sit in my lap all the time, he would lick tears off my face, he would look very pathetic and sorry for me, then he would get a look on his face that I would swear was saying "ok look, I've helped you all day, now get your butt out of bed because I want to go outside now." I heard him loud and clear. And what he was telling me was that it wasn't all about me, I was not alone, other people in the world have needs too. He was really great at teaching me unconditional love, and he was equally great at not allowing me to wallow in self-pity. Thank you so much Elizabeth for talking me into keeping him; that was the best thing you ever made me do!

Since Gizmo, I've had a menagerie of other pets, and they all have taught me things. I had a little beige mutt who taught me how to be good and faithful. He was not a terribly bright dog, but he was always there at the foot of the bed watching out for me. There have been a number of cats who have taught me the value of cuddling with a warm kitty. They also taught me the value of asking first, as kitties who don't want to be hugged can cause a lot of bleeding. There is a delightful weiner dog named Sadie who is the house clown. She constantly makes me laugh, and there is real value in that. We also now have a black-lab mix, Buddy, who was found roaming around (all of our multitude of animals have been rescues, we have yet to pick a critter, they all pick us) in need of a loving home. Well, a few weeks after we opened ours to him, he was diagnosed with a terrible cancer. We were told his life would be counted in weeks. We were devastated. That was about 7 months ago, which teaches me that the doctors don't know everything. They are paid to be consultants on our bodies (or our dogs'), and they do the best they can, but it's still our body and we know it best. Buddy has taught me that it's all in the out-look. He doesn't know that he's supposed to be sick, nor does he know that he's supposed to feel sorry for himself. So he doesn't; he runs and plays and loves his backyard. The reality is he has cancer, and his life is short, but he's here now and we love him. I don't want to waste the time we have with him feeling sorry for him or for me. So we play.

Ok, this may be really simplistic, but there's a lot to be said for what animals can teach us, and what they give us. For me, having something to care for gives me time in my day to stop thinking about my pain. No matter how much pain I'm in, they still need to be fed and walked. They don't allow me to pull the covers up over my head and stay in bed all day. They love me, and they insist that I love them back. Maybe, the next time you hurt, get up and feed your goldfish (not every time you hurt or the poor fish will explode) or feed the birds then watch them from the window. Work up to a cat or a dog who will have needs of his own.

When life gives you lemons, make lemonade!

I can't tell you how much I hate that saying. It's so cloyingly sweet and trite. It goes along with:

• Well it could be worse
• Well at least you have your ....
• You're not handicapped, you're handicapable
• You're not disabled, you're differently-abled

I really hate all of those sayings because they're just so silly and meaningless. Worse, it makes me feel like that's what able-bodied folks say to disabled folks to make themselves feel better. Like you're saying something to me that, first-of-all I've never heard, and second-of-all is going to make me feel so much better. It doesn't. I think politically correct speech has brought dialogues to a stand-still. Everybody is so careful not to offend me that they just look over me like I don't exist. Like I'm deaf; like I didn't hear your child just say "mommy, that lady's in a wheelchair." I would rather hear the mother open a dialogue about it with her child than hear the inevitable "shhhh, don't look at her." There's nothing here that I'm ashamed of, so why is the topic of my disability so off limits? Of course, while I'm eating dinner, I don't need to tell the whole story to the server (not that I mind), but certainly little kids are curious, and I don't mind that. It's so very honest when a child comes over and says "why are you in a wheelchair?" So let's lose politically correct speech, let's ask the questions that we both know you want to ask (frankly, I'm curious when I see someone in a wheelchair too), then we get the 800 pound gorilla out of the room and we can move on to other conversation topics.

I've also learned another thing about silly sayings like "God never gives you more than you can handle." I've always thought they were really rather insulting. But it's actually the reverse. I really think that people so want to help, and with something like this, they can't. So they at least want to say something that will make me feel better. That's a nice thing. It may be one of the only good things about being disabled, but I get to see people at their very best. I see people trying to say something that, although I may have heard it a million times and it doesn't really make me feel better, was intended to lift my spirits. I have people hold doors for me. When I am using my crutches, I am very slow. I will tell someone holding the door "it's okay, I'm very slow, it will take me a while to get there," and inevitably they say "oh, that's okay, no rush, take your time." People go out of their way to open doors for me, help me with things in stores, reach things that I can't, and even help me get my wheelchair in and out of the car. That's not meant to patronize or to assume I can't do it myself, that's an act of kindness.

A gal was talking to me today and said that someone told her that she should go to the gym because the chemicals released when we exercise are some of the same chemicals found in anti-depressants. She was fuming! She was really angry, assuming this man had just called her fat and lazy, and that if she wasn't fat and lazy, she wouldn't need her anti-depressants. First of all, she wasted a lot of her day being really angry, and the guy who said it didn't even know about it - so she certainly wasn't punishing him. But mainly, "you should never attribute to malice what should be attributed to stupidity." That doesn't mean that man is stupid, but perhaps he said something insensitive. Maybe he was honestly trying to help. I am hoping that this blog will open a dialogue with other folks who hurt (and those who don't) to try to offer ideas on how to get over the rough spots. Maybe that's what he was trying to do: offer an idea that had worked to make him feel better. And this gal was a bit over-sensitive and got angry instead of thinking, "well, thanks for the advice." Not all advice is useful to me, but I certainly appreciate someone giving me advice on how to feel better. Perhaps, instead of being so angry, her answer could have been "thank you." Then, if he really was being mean, he would have been the one with the ruined day, not her.