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.