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30 July 2013

Turning pain into wisdom


What is wisdom? Google defines wisdom as:
  • The quality of having experience, knowledge, and good judgment; the quality of being wise.
  • The soundness of an action or decision with regard to the application of such experience, knowledge, and good judgment.
  • the trait of utilizing knowledge and experience with common sense and insight
  • the quality of being prudent and sensible
I was diagnosed nearly 30 years ago at the age of 7 with juvenile rheumatoid arthritis (JRA), which causes chronic pain as well as other problems & I have had other pain causing diseases added as well. Since then, I've definitely learned a lot because of pain. I've learned that just because I have pain, it does NOT mean that my life is horrible or not worth living. Does it have it's horrible moments? Sure, there's no doubt about that. But, despite the fact that I truly do not recall a pain-free time in my life, it does not mean my life has been so bad it's not worth living. In spite of pain, I've got so much to be thankful for. Family and friends who, while they don't all know what it's like to be in my shoes, make an effort to understand are just one of the many things. Although I do have a number of family and friends (for example my mom & my bestest friend amongst others) who have their own chronic pain issues as well. I am also fortunate that my in-laws all understand my pain and I don't have the problems many women do with their in-laws.

And because of the chronic pain in his family, my husband gets it. He has stuck by me through stuff that would cause many men to run screaming in the opposite direction. We married 18 years ago today when we were just 18 and not many people ever thought we'd make it as long as we have. And yet, he stuck beside me while I was hospitalized for 11 mo unable to feed myself let alone do any self care. I was so sick that I couldn't keep even the blandest of food down, and ended up losing over half of my body weight. Meds and a lack of being able to exercise had caused my weigh to balloon. But months of nausea and vomiting, as well as a case of C-Diff,  caused me to drop from right around 200lbs (way too heavy for my 5'3" small boned frame) to somewhere between 90 and 95lbs in about 4 mo. I ended up with a feeding tube to keep nutrients in me. Once my esophagus and stomach healed, I slowly began to be able to eat again. Even now, over 3 years after having the feeding tube removed, my appetite is nothing like it was before. I was given both blood and plasma at various times. Because of various infections, in addition to the C-Diff I also had VRE and MRSA, anyone entering my room had to don a gown and gloves. In fact, I believe I was told because of my history, any future stay at that hospital means I am by default considered a patient who will require anyone entering the room to gown and glove up. I do not remember most of Jan 2009 through April 2009. Even after that, things are spotty up until the fall of 2009.  I couldn't even scratch an itch for awhile because my arms and hands were so contracted I couldn't move them. My hands were curled into a loose fist, my wrists bent so that my palms were drawn down to ward the underside of my forearm, elbows bent so that my hands rested on my chest under my collarbones. I had to learn to feed myself again, I had to learn to write again, I had to learn to stand, and then learn to walk. Because those were hard won victories, I am thankful just to be able to take care of myself, to get around with minimal assistance. I've experienced not being able to do the simplest of things for myself and that makes me value even more what I am able to do.  When the doctors all thought I was not going to make it, he did! He said there was no question about it for him because he knew I'd fight. When I was told I'd likely not walk again, he assured me we'd figure it out. I then spent the following 2 yrs  in a nursing home, where I had to learn to do all of the basic self-care tasks for myself all over again. And when I told him about having taken my first steps in Apr 2010 after only 4 mo of PT (rather than the 2-3 yrs of daily intensive PT it was predicted it would take just for me to be able to stand), he was NOT surprised. He knew I'd get back on my feet. And because of that, my son also had no doubt I'd walk and happened to be spending the day at the nursing home with me the day I did walk.

Chronic pain has taught me that I am a lot stronger than I'd have guessed. It takes mental strength to fight pain and not let it win. It takes choosing to find something good about life in spite of the pain. I also have a number of friends I wouldn't have met had it not been because of chronic pain. Because of my pain, when my best friend was having a lot of problems that were all too familiar to me, and her doctors were telling her that she was fine, I told her to keep trying to get help, because while how she felt was normal for me, it was NOT normal for her. Unfortunately, she ended up getting a diagnosis similar to mine. I am glad we've got each other to understand and all but I would have been perfectly happy to not have her know! Unfortunately, because of doctors who were not proactive, she's got a lot of joint damage and has had multiple surgeries. But we can both laugh at ourselves and at each other and we've always joked that together we pretty much make one relatively healthy person. And her surgical experiences have turned out to be helpful for me. Because I am facing a similar surgery, I have a bit more of an idea what to expect because of what she has shared with me. I know how much of an impact that type of surgery can have. I also have spoken to a number of people I've been treated by in the past and gotten various points of view that have all helped me with my decision about what I should do.

Pain has taught me that how to adapt as well. I cannot do things the way most people do them. In fact, when I had my son, the nurse sent to help me with nursing the first time kept saying I was holding my son wrong. She didn't expect me to  stand up for myself. I told her I could either hold him the way she was telling me OR I could do it MY way and know that his head was being properly supported and that I'd not drop him.  For me, adapting is second nature after all these years. I grew up having to find ways to get jobs done that made them easier on my body. I know that one time during a PT eval, when the PT asked if I had trouble lifting a gallon of milk, or carrying a basket of laundry and a handful of other household items, I began to laugh which was a puzzle to the PT. I explained that on most days, I knew better than to try to lift a gallon of milk. I generally bought half gallons or less OR when we bought a gallon, some got put into a smaller container so I didn't have to lift a full gallon. Same with heavy bottles of laundry detergent etc. I also rarely carried a basket of laundry very far. As much as was possible, I would slide the basket along the floor. Now, especially, I am unable to carry a basket and still walk since I use forearm crutches to walk. That makes sliding a basket hard too because it gets in the way of my feet or my crutches and becomes a fall hazard. And that is one thing I MUST avoid because between all of my health issues, I have also developed full-blown osteoporosis. So not only would a fall be painful, it could very well mean a nasty fracture. When I first came home from the nursing home, it took me a bit to find a way to deal with doing laundry. But one day, I took a belt, looped it through some of the holes in a basket and fastened it in a way that I could have the belt around my waist, keeping the basket's weight fairly well distributed but also keeping it from being a fall hazard. Another adaptation has been to use a bar stool in the kitchen when I am cooking. I sit at counter height to do prep work, the stool is a great height if I need to be stirring something on the stove, etc. I just gather everything I need and put it within reach and position the stool where I am in the area of counter space between the stove and sink. I can reach toward both without moving, or can easily slide the stool either way if I need to be closer to one or the other. Essentially, I've learned to work smarter not harder. I find the tools I need to make jobs easier whenever possible OR I adapt ways of doing things. Just because other people do things a specific way, it doesn't mean I have to as well.

I am also not at all uncomfortable or ashamed of using various assistive devices. I keep a grabber near by most of the time, it actually is almost always sitting in the space between my wheelchair seat and the armrest. I use jar openers. When I'm writing, I make sure to add grips to pens to make them easier to grasp. I don't care what other people think when I use a handicapped parking space, although now, it's not easy to miss the leg braces and crutches so I no longer get dirty looks for appearing just fine and not needing a handicapped space. But my husband has been assaulted in the past because he parked in a handicapped spot for me and someone had a problem with thinking I didn't need to use that spot. I have never really had a struggle over using assistive devices because I grew up using them. They're a normal part of my life. I've never had the concerns many people do over how other people see me. I grew up not having a choice...well I guess there was always the choice of not using assistive devices but that would have meant less independence for me and that is simply NOT something I would choose. If having more independence means I use a wheelchair at times or I use various devices to help me do things that I'd not be able to otherwise do, then so be it. I quite simply am not worried about what other people think. So pain has taught me to care little for doing things certain ways to keep up an expected appearance or to be like other people. My health issues require me to do things MY way and because of that, I've learned that I am the only judge of what's right and wrong for how I get things done. Do what works best for you, even if it means going against how things have always been done. So in a way, pain has taught me to follow the beat of my own drummer I guess. I don't have to be like everyone else and do things like everyone else to feel good about myself.

Pain has also taught me to have a stronger faith. I've had to rely on God to sustain me through some rough times. And I don't know that I'd have gotten through some of those times as well as I did without that reliance. Being told I was unlikely to walk again could have been a harsh blow. But, after hearing that, I wasn't destroyed emotionally. I prayed, and a sense of comfort enveloped me. I knew that whether I walked again or not, I would still be able to do what I'd been doing before going into the hospital. Just because I couldn't walk didn't mean I lost value as a person. In fact, that would open me up to be more understanding of things others were going through as well.

So all in all, if not for pain, I certainly would NOT be the person I am today. My body may not be in great working order, but, that's just life. Yes, I have pain 24/7 and in fact do not remember a pain-free life. But it could be so much worse. My needs are met; I'm blessed with relatives, chosen family and friends whom I love; I have faith that no matter what the future holds, everything happens for a reason. I have so much to be thankful for in spite of my health issues. I am blessed with a wonderful medical team who cares and does their best to help me. So yes, life with pain is not the optimal choice. But, it has taught me quite a bit of positive stuff. I believe our experiences make us into the people we are. So without my pain, I'd not be the person I am. It has made me more mature (pain as a kid has a way of making you grow up fast) and made me more compassionate toward others. I'm more tenacious than I would be had I not grown up with pain. Our experiences mold us into the person we are. How we respond to trials and challenges IS a choice whether we like to admit it or not. We can respond to pain by being angry, bitter, and unhappy but when pain changes us into that kind of a person, then it has defeated us. We also could respond by choosing to find happiness in spite of the pain, by knowing that while pain may do its best to break our bodies, it will not make us into a person we do not want to be, and we can choose to grow in spite of  (or even because of) the pain. When we respond in these kinds of ways, then no matter what pain has done to our bodies, it has not defeated us.  Just as with any other trial in life, pain can make us a better person, or it can make us a bitter person. I may have had to physically give in to pain but, because I have taken the experiences pain has given me and made the choice to not let them make me into that bitter person, then pain has not defeated me but has made me a better person. 

Does all of this make me wise? By the first definition: having experience, knowledge and good judgment, it may. I have had much experience with pain, more than I'd like. But whether it is enough is a subjective question. To one person who has no experience, they may see my experiences as being sufficient to feel they are wise yet to someone who has more experiences than I do, I would not be. The same is true for my knowledge about pain. As for good judgment, well, that is even more subjective than the other two items. Someone who is against using pain medications would see my use of them as unwise. For those who feel the use of pain medications for their intended purpose is an appropriate course of treatment, then I am only doing what is standard for pain care, which is a wise idea.

For me, the use of pain medications as well as any other medication is unwise only if the risks outweigh the benefits; if I  get decent pain control, have few side effects and what side effects I do have are tolerable or easily treatable, then the risks are worth the benefits I get. The test for me is whether my life is improved in some way given all of the variables.  Since I am treated at a wonderful pain office, my medications, side effects, interactions etc are well monitored. The dose is carefully chosen to avoid the harshest side effects while giving me the most relief possible. Finding that dose is not always easy. Even finding the appropriate medication is not easy. For many people, a medication works fine for awhile and then tolerance sets in. Some tolerance is a good thing because it leads to feeling less bothered by some of the typical side effects. For a patient who has never taken an opioid pain medication, starting one can lead to nausea. But for the person who needs that medication to control their pain, after they have taken a medication for awhile (usually approximately 2 weeks of regular use) the nausea will subside. If it doesn't, then that medication may not be the right one for them. It depends on how bad the side effects are, how much relief they get, and other things such as medication interactions, allergic reactions etc.

One thing we must remember, each person has a different view on this issue. And because each of us meet pain in very different ways, we must respect that we will all respond different. Many people would rather not have the lessons pain has taught them. And that is understandable. We should not presume to tell them that they are wrong. But, the same is true for those who value the lessons that pain has taught them. Two people could have the exact same experiences with pain and yet what is right for one. would be completely wrong for the other. Just because I view pain a certain way, does not mean that my view is how everyone should see their pain. Even my opinion on how letting pain make you bitter, angry etc means you've been defeated by pain, is quite simply that, just my opinion. Other people may not feel the same way I do. Life is not as black and white as we make it out to be.

[Edited 7/31/13 to add picture.]

14 April 2013

Limiting pain


I was going through Mary's FB pics from her trip here last month and just kept going farther back and found this. As hard as it is for most people with chronic pain, I am blessed in that I KNOW certain family and friends, unfortunately, truly do understand my pain and my limits.

Many people run into trouble with in-laws not getting it, but my in-laws all understand since almost all of the females have been touched by RA or fibro, etc. My guys are great about understanding and not making me feel feel bad... I still do but that's just normal.

Mary and Mom both understand because they both live it. Some friends do try to protect me from myself when I am overdoing it or am considering doing something that would not be a great idea. Some friends and family just do not get it though. And there's nothing I can do to make them get it sadly.

I've written a piece about what RA is like but that doesn't even help some people understand. I was once told that what I wrote was "too negative" and "too dark", but unfortunately that's what RA and other chronic illnesses are at times: dark and negative. That's not to say there aren't light and happy times. For many of us, those times are what keep us going during the dark times. And in all honesty, there are times the positive far outweighs the negative, and it is precisely those times that keep us going during the negative times. Having had a pretty rough period, I know that if not for those positive times during that rough period, as well as the prayers and good thoughts of people all over the world that I'd not have done as well as I did.

No one likes to be limited. But, in all the years of living with RA, one thing I've learned is to do my best to focus rather on what I CAN do than what I cannot do or what I am limited in doing. That lesson was brought home to me at the nursing home. Any progress was celebrated. And with Jim, the word "set-back" was not in his vocabulary it seems. There were times I felt a flare was a set-back, but not Jim. He kept telling me that IF I went back in the hospital or did something incredibly dumb (my term) and got injured then I could say that was a set-back. But he was right (as he usually is!) and something that is (or should be) a normal and expected part of a disease process happening is NOT a true set-back and therefore should be viewed as just part of living with a chronic illness.