Friday, January 30th
I'm wondering why anyone would ever read this blog? I want to share encouragement, strength and hope - but getting there is always painful or difficult.
This has been a week of doctors and MRI's and swallowing studies. My doctors are great. The techs all know me (you too?) because I've had so many tests done in the past 18 months. The tests themselves exhaust me to say nothing of the 1.5 hour drive each way with no traffic. Needless to say I'm tired and hurting today. But I don't want to stay this way.
So, I need to do somethings that will lift my spirit. First on that list is walking the dog. I am blessed to have a beautiful path we drive to to walk. That will help. I want to bake for my husband's birthday party tomorrow - do I have the energy? Could I do it and not feel resentful that all my energy went to his cake and snacks. It sucks when you only have 3 good energy hours in a day.
So much of this disease is figuring out how to live with all the nagging, relentless body issues. So often it's a daily thing to just keep my spirits up. I need to remind myself that I do it for me - when my spirits are up my day is definitely better. That's the reason I work so hard to have a good attitude. While attitude isn't everything, it's probably 90% of it. Attitude of gratitude. Okay, that's where I will be for now.
Friday, January 30, 2009
Tuesday, January 27, 2009
Making Plans Makes Me Happy
Tuesday, January 27th
It's 9:00 in the morning and I'm feeling happy! I woke up in pain. I made myself get up by 8:00, took my meds and my pain meds and then just slowly moved into my straightening up the house motif. I sat down to send a few emails - it's snowing in DC my daughter says - to tell my daughter and son that I'd be able to visit them in March! One thing led to another, series of emails back and forth with the kids; planning to camp in July with cousins; and then I notice that my heart is happy - genuinely happy!!! Is it because I get to see my kids that I miss so much? Sure some of it is. But when I really sit and ask myself why I am so happy right this minute, it's because I am making plans. In the midst of a flare; during dark moments full of dark thoughts when I ponder what my life will be like in five years; not ignoring the ecomony hitting us square in the face - all this is still real and still ocurring and I feel happy. I haven't felt happy since sometime during the holidays.
Happiness is not a guarantee. When I was a little girl of 10, I found this magnet at the bookstore of the church camp where I first really met Jesus. It still has a place on my refrigerator. The magnet says - "Give to the world the best you have and the best will come back to you." I remember well the session when my therapist told me that there is no guarantee that giving your best will guarantee a good life. I was shattered, angry and lost. Whether you call it Karma, turning the other cheek or any host of words, underneathe is the hope, the wish that we can control our daily life. We can't. Sure we control every thought we act on and every movement and decision we make. But when it all gets thrown together to create an hour, a day, a week, a month, a year, a lifetime; we realize that so little of what happens is out of our control. Lupus gives me extra doses of reminders that I'm not in control. One of the funny movie lines that is filtering through the culture lingo is "You're not the boss of me!" Well, many times Lupus is the boss of me. So what do I do? How did I get to a happy day today when the last eight or nine days have really been a struggle? The only difference is that I am making plans to do things I love and I do believe that I will be healthy enough to travel back east. It just makes me feel good.
It's not easy to find the feel good things. For me, they happen, I realize that I'm feeling good then I look at how I got there. It is never by plan and always by gift - what an awkward sentence but I'm trying to communicate the vast difference. I believe that the joy and goodness in life comes when we are going about doing the things we love to do and doing things for those who need our help. The joy is the gift - the grace. My heart is still smiling. I will take it in and enjoy as long as I can today.
It's 9:00 in the morning and I'm feeling happy! I woke up in pain. I made myself get up by 8:00, took my meds and my pain meds and then just slowly moved into my straightening up the house motif. I sat down to send a few emails - it's snowing in DC my daughter says - to tell my daughter and son that I'd be able to visit them in March! One thing led to another, series of emails back and forth with the kids; planning to camp in July with cousins; and then I notice that my heart is happy - genuinely happy!!! Is it because I get to see my kids that I miss so much? Sure some of it is. But when I really sit and ask myself why I am so happy right this minute, it's because I am making plans. In the midst of a flare; during dark moments full of dark thoughts when I ponder what my life will be like in five years; not ignoring the ecomony hitting us square in the face - all this is still real and still ocurring and I feel happy. I haven't felt happy since sometime during the holidays.
Happiness is not a guarantee. When I was a little girl of 10, I found this magnet at the bookstore of the church camp where I first really met Jesus. It still has a place on my refrigerator. The magnet says - "Give to the world the best you have and the best will come back to you." I remember well the session when my therapist told me that there is no guarantee that giving your best will guarantee a good life. I was shattered, angry and lost. Whether you call it Karma, turning the other cheek or any host of words, underneathe is the hope, the wish that we can control our daily life. We can't. Sure we control every thought we act on and every movement and decision we make. But when it all gets thrown together to create an hour, a day, a week, a month, a year, a lifetime; we realize that so little of what happens is out of our control. Lupus gives me extra doses of reminders that I'm not in control. One of the funny movie lines that is filtering through the culture lingo is "You're not the boss of me!" Well, many times Lupus is the boss of me. So what do I do? How did I get to a happy day today when the last eight or nine days have really been a struggle? The only difference is that I am making plans to do things I love and I do believe that I will be healthy enough to travel back east. It just makes me feel good.
It's not easy to find the feel good things. For me, they happen, I realize that I'm feeling good then I look at how I got there. It is never by plan and always by gift - what an awkward sentence but I'm trying to communicate the vast difference. I believe that the joy and goodness in life comes when we are going about doing the things we love to do and doing things for those who need our help. The joy is the gift - the grace. My heart is still smiling. I will take it in and enjoy as long as I can today.
Sunday, January 25, 2009
Another painful day
Sunday, January 25th bedtime
My days are really hard right now. I never wake up without pain - which makes it so much harder to get up and start my day. I know that there are times when I do wake up without pain - and life is so much different on those days. I took my extra pain meds immediately this morning - usually I wait until a few hours into my day - but today, today I didn't want to waste half the day waiting to see if the pain was going to get better. The meds really do help. But they are so strong and serious that I feel like I shouldn't need them - but I do. My pain management Dr. says it's okay. I've never had problems with cutting back or stopping pain meds. I hate admitting that I need them again. I also hate how useless I feel when I lose more than half my day because of pain limiting what I can physically do and meds limiting my ability to safely drive. Did you know that if you are on pain meds on a regular basis, that it is very possible that if you get pulled over by a cop, you could end up with a DUI as a result of blood tests and pain meds? Even more than this very real concern, is that I am affected by my meds. I know my clear thinking is fogged; I am a bit looser and less concerned about things; so I need to make choices that are safe and smart.
So today was another day of pain, although I did get a fair amount accomplished. And I didn't spend hours on the couch worn out or pained out. I did the things I needed to do and even saw a movie with my husband - but there was little joy because of the constant pain and weariness. I see my doctor this week and I will find out what more I can be doing for my myofacial pain and osteoarthritis. I need to be more assertive with him because he's fairly remote emotionally and tends to move through the apt. quickly with no extraneous dialogue. I need to talk with him more so he better understands what life has been like the past week or two.
It's 8:10 and I'm beat - ready for bed. I've been working on a project for one of my kids - so I am exhausted. Lupus takes so much out of me. Is this a flare? I have the rash. So, I think it is. Not that I want that to be true. I really just want to understand what I need to do to feel good most of the time. In consideration of doing my part to relieve pain, I will head upstairs and do some exercises before I give in for the night. I need to feel more joy and contentment. I need to feel like my day and time is worthwhile. I need to feel like my life is not overshadowed by my disease. But right now, Lupus is overshadowing my ability to enjoy my day.
My days are really hard right now. I never wake up without pain - which makes it so much harder to get up and start my day. I know that there are times when I do wake up without pain - and life is so much different on those days. I took my extra pain meds immediately this morning - usually I wait until a few hours into my day - but today, today I didn't want to waste half the day waiting to see if the pain was going to get better. The meds really do help. But they are so strong and serious that I feel like I shouldn't need them - but I do. My pain management Dr. says it's okay. I've never had problems with cutting back or stopping pain meds. I hate admitting that I need them again. I also hate how useless I feel when I lose more than half my day because of pain limiting what I can physically do and meds limiting my ability to safely drive. Did you know that if you are on pain meds on a regular basis, that it is very possible that if you get pulled over by a cop, you could end up with a DUI as a result of blood tests and pain meds? Even more than this very real concern, is that I am affected by my meds. I know my clear thinking is fogged; I am a bit looser and less concerned about things; so I need to make choices that are safe and smart.
So today was another day of pain, although I did get a fair amount accomplished. And I didn't spend hours on the couch worn out or pained out. I did the things I needed to do and even saw a movie with my husband - but there was little joy because of the constant pain and weariness. I see my doctor this week and I will find out what more I can be doing for my myofacial pain and osteoarthritis. I need to be more assertive with him because he's fairly remote emotionally and tends to move through the apt. quickly with no extraneous dialogue. I need to talk with him more so he better understands what life has been like the past week or two.
It's 8:10 and I'm beat - ready for bed. I've been working on a project for one of my kids - so I am exhausted. Lupus takes so much out of me. Is this a flare? I have the rash. So, I think it is. Not that I want that to be true. I really just want to understand what I need to do to feel good most of the time. In consideration of doing my part to relieve pain, I will head upstairs and do some exercises before I give in for the night. I need to feel more joy and contentment. I need to feel like my day and time is worthwhile. I need to feel like my life is not overshadowed by my disease. But right now, Lupus is overshadowing my ability to enjoy my day.
Saturday, January 24, 2009
Caught in the disease once again
Saturday January 24, 2009
I hate Lupus. I hurt all over. It's been a really bad week with pain and depression. They are related. The pain keeps me from doing what I want to do and the depression hits when I feel so useless and unable to act in a way that allows me to control my life. I had to cancel coffee with friends and that is really hard except when I feel like this I also don't want to be with anyone. I wish I could get myself out of this depression. I don't seem to be able to. And I hate it. I want to have enough will power to overcome the depression and do things that I love to do. I also believe that the pain (osteoarthritis and fibromyalsia) should be something I can do something about. I walk every day. I'm doing stretching DVD's several times a week (trying to come back after 8 chest surgeries and 2 open abdominal surgeries). The stretching is exhausting. And somehow I don't think it should be.
I've been writing about how I am not my Lupus. It's so much harder to feel that when my body feels captive to it's manifestations. I'm in remission. But I still hurt so bad. I don't want this to be a whiny entry. I want to cry. Crying is good. I know what is needed at this point - total and complete surrender to how helpless I am in the face of Lupus. Here come the tears. Helpless - doesn't mean I can't do things for myself - helpless means that there really is nothing I can do when I am taking my meds, getting my exercise and getting rest and the pain and exhaustion are still in charge. I have to admit one more time that I am truly powerless over the pain, the depression and the frustration; that for now the best I can do is acknowledge how much I hurt; to admit to how depressed I am and to try and take the next step that will send me on a path that might lead to some joy or satisfaction. My first step was to walk my puppy. He brings me great joy. It's raining and I still went walking. My next step was to write rather than go to bed. I want to go to bed. But that won't help anything really. Sometimes I do need to go to bed and wallow in self pity for awhile. But I can't do that for too long because it is so destructive. I hate it when people tell me to be grateful because there's always someone who's worse off than me. It's true. I am really lucky to be alive - Lupus did almost take me last year. I have arms and legs. I am not paralyzed. My body responds to my commands. I don't have cancer. That's what I do. I list all the things I am grateful for not having. It helps somehow.
So here I am left to face the day - it's only 9:00am. My husband is off with his sports car for the morning and I am left to me. What I choose to do next will impact the whole morning. This is true at every juncture where I have a choice of what to do. Will I give in, much different than surrender, to my fatigue and pain and sleep or watch TV? Or will I decide to do one of my fun activities that are available to me. I could sew; scrapbook; finish a gift for my daughter; clean out my closet; the list goes on.
I don't feel as much despair as I did when I sat down to write. Surrender really works. And when you've really learned how to emotionally surrender, it doesn't take hours for my mood to shift - it can happen quickly - just by writing this blog. What helps your emotions shift? It's so important to know what works for me. Because then I am not a victim, I am a survivor. Being a survivor gives me choices. Being a victim leaves me destined to repeat patterns that only bring me down.
Give me enough grace today to be kind to myself when I am angry, frustrated or limited by Lupus. Let me treat myself as I would my own child - with love, concern, help and hope.
I hate Lupus. I hurt all over. It's been a really bad week with pain and depression. They are related. The pain keeps me from doing what I want to do and the depression hits when I feel so useless and unable to act in a way that allows me to control my life. I had to cancel coffee with friends and that is really hard except when I feel like this I also don't want to be with anyone. I wish I could get myself out of this depression. I don't seem to be able to. And I hate it. I want to have enough will power to overcome the depression and do things that I love to do. I also believe that the pain (osteoarthritis and fibromyalsia) should be something I can do something about. I walk every day. I'm doing stretching DVD's several times a week (trying to come back after 8 chest surgeries and 2 open abdominal surgeries). The stretching is exhausting. And somehow I don't think it should be.
I've been writing about how I am not my Lupus. It's so much harder to feel that when my body feels captive to it's manifestations. I'm in remission. But I still hurt so bad. I don't want this to be a whiny entry. I want to cry. Crying is good. I know what is needed at this point - total and complete surrender to how helpless I am in the face of Lupus. Here come the tears. Helpless - doesn't mean I can't do things for myself - helpless means that there really is nothing I can do when I am taking my meds, getting my exercise and getting rest and the pain and exhaustion are still in charge. I have to admit one more time that I am truly powerless over the pain, the depression and the frustration; that for now the best I can do is acknowledge how much I hurt; to admit to how depressed I am and to try and take the next step that will send me on a path that might lead to some joy or satisfaction. My first step was to walk my puppy. He brings me great joy. It's raining and I still went walking. My next step was to write rather than go to bed. I want to go to bed. But that won't help anything really. Sometimes I do need to go to bed and wallow in self pity for awhile. But I can't do that for too long because it is so destructive. I hate it when people tell me to be grateful because there's always someone who's worse off than me. It's true. I am really lucky to be alive - Lupus did almost take me last year. I have arms and legs. I am not paralyzed. My body responds to my commands. I don't have cancer. That's what I do. I list all the things I am grateful for not having. It helps somehow.
So here I am left to face the day - it's only 9:00am. My husband is off with his sports car for the morning and I am left to me. What I choose to do next will impact the whole morning. This is true at every juncture where I have a choice of what to do. Will I give in, much different than surrender, to my fatigue and pain and sleep or watch TV? Or will I decide to do one of my fun activities that are available to me. I could sew; scrapbook; finish a gift for my daughter; clean out my closet; the list goes on.
I don't feel as much despair as I did when I sat down to write. Surrender really works. And when you've really learned how to emotionally surrender, it doesn't take hours for my mood to shift - it can happen quickly - just by writing this blog. What helps your emotions shift? It's so important to know what works for me. Because then I am not a victim, I am a survivor. Being a survivor gives me choices. Being a victim leaves me destined to repeat patterns that only bring me down.
Give me enough grace today to be kind to myself when I am angry, frustrated or limited by Lupus. Let me treat myself as I would my own child - with love, concern, help and hope.
Tuesday, January 20, 2009
If I Am Not My Lupus Then When Do I Feel So Discouraged?
Tuesday, January 20th an historical day for America
I missed the inauguration because I was at the doctor. Seems appropriate for me somehow. I watched bits and pieces of this historic day and allowed myself to feel the impact today might have on our history as a country. That's not why I'm writing.
I'm discouraged and depressed, again. We went to the doctor for test results - all of which I knew were not good news. I thought I had prepared myself to hear the doctor put into words what I already knew; the tests confirmed that you have nearly no colo/rectal function. You do not have the muscles to push waste through your system. Okay, I have known this for many months and suspected that it was irreversible for at least six weeks. The doctor stated what we all ready know - I cannot have a bowel movement without using an enema. The new information was what I most fear; I use the enema until it no longer works then we look at removing your colon. My body sinks into itself. The very thought of a colonostomy and what it takes to get to that point is so discouraging. The good news is that it's still in the future. So for now, just keep doing what I'm doing.
What about my lungs? Well, medical expertise seems to believe that I am aspirating into my lungs, causing essentially pneumonia. So, another swallowing study to determine if indeed there is a leak in my stomaphegus. The thought of having a leak is more than I can take right now - it was a leak that began the beginning of the end of my esophagus.
Now how about my pancreas? Well, we all seem to agree that the opening is pinched by your paralyzed diagraphm. Do the test next week and go back to your specialist and she what she suggests. It will either be more tests and the answer will be determined from this test. By the way, the test has a very high outcome of pancreatistus; 1 in 4. I am not going to be the 1 this time.
My head hurts and I am tired. I want to have the strength to deal with these medical issues when they need my attention, and then get rid of them so I can have other things going that matter to me. I want to work on a seminar about Lupus and couples. I want to get a web presence to help others with their Lupus problems. I want to finish my quilt. I want to be free from the ever present load I carry with me much of the time. Right now, I just want to lie down and sleep. I'm tired and I'm down. It's always a decision between giving myself some time to absorb what the doctors tell me or just pushing myself into tasks to get my mind off what's not good news. I used to push myself to forget. Today I am much more likely to give myself time to absorb and react. When I do give myself this time, I usually come up out of the depression and move forward from an emotionally connected rather than forced place. And I am grateful that my kids are all grown and out of the house so I have the freedom to lie on the couch for an hour or three before I move on to the next task before me.
I know I am not my Lupus but some days it's much harder to feel that than others. Today is one of those days.
I missed the inauguration because I was at the doctor. Seems appropriate for me somehow. I watched bits and pieces of this historic day and allowed myself to feel the impact today might have on our history as a country. That's not why I'm writing.
I'm discouraged and depressed, again. We went to the doctor for test results - all of which I knew were not good news. I thought I had prepared myself to hear the doctor put into words what I already knew; the tests confirmed that you have nearly no colo/rectal function. You do not have the muscles to push waste through your system. Okay, I have known this for many months and suspected that it was irreversible for at least six weeks. The doctor stated what we all ready know - I cannot have a bowel movement without using an enema. The new information was what I most fear; I use the enema until it no longer works then we look at removing your colon. My body sinks into itself. The very thought of a colonostomy and what it takes to get to that point is so discouraging. The good news is that it's still in the future. So for now, just keep doing what I'm doing.
What about my lungs? Well, medical expertise seems to believe that I am aspirating into my lungs, causing essentially pneumonia. So, another swallowing study to determine if indeed there is a leak in my stomaphegus. The thought of having a leak is more than I can take right now - it was a leak that began the beginning of the end of my esophagus.
Now how about my pancreas? Well, we all seem to agree that the opening is pinched by your paralyzed diagraphm. Do the test next week and go back to your specialist and she what she suggests. It will either be more tests and the answer will be determined from this test. By the way, the test has a very high outcome of pancreatistus; 1 in 4. I am not going to be the 1 this time.
My head hurts and I am tired. I want to have the strength to deal with these medical issues when they need my attention, and then get rid of them so I can have other things going that matter to me. I want to work on a seminar about Lupus and couples. I want to get a web presence to help others with their Lupus problems. I want to finish my quilt. I want to be free from the ever present load I carry with me much of the time. Right now, I just want to lie down and sleep. I'm tired and I'm down. It's always a decision between giving myself some time to absorb what the doctors tell me or just pushing myself into tasks to get my mind off what's not good news. I used to push myself to forget. Today I am much more likely to give myself time to absorb and react. When I do give myself this time, I usually come up out of the depression and move forward from an emotionally connected rather than forced place. And I am grateful that my kids are all grown and out of the house so I have the freedom to lie on the couch for an hour or three before I move on to the next task before me.
I know I am not my Lupus but some days it's much harder to feel that than others. Today is one of those days.
Monday, January 19, 2009
Focusing on the Lupus Body Problems: How Much is Too Much
Monday, January 19th
I just finished a video on stretching using the ball. It felt so good. I went into it very tired and somewhat sore. I came out of it feeling like I'm breathing more fully; like I can really feel my legs underneath me and more tired than when I began. I haven't compiled a list of my New Year's Resolutions, but were I to, daily exercise beyond walking would be near the top. Stretching; it's good for my body and good for my soul.
It's been a very bad few days for my hands - the pain in my joints has increased ten fold - I had to take pain meds for my hands for the first time. The only thing I did differently over the past four days is cleaning showers and vacuuming hard wood floors and carpet. My hands don't like it but it has to be done. My husband bought a Rumba self propelling vacuum robot - I hope it helps.
At the lupus walk awards luncheon my husband and I attended last Saturday, one thing struck me as it always does; at Lupus functions, people define themselves by their disease. In the first three minutes, most people tell you how long they've had it, how old they were when they were diagnosed, what the severest manifestation is in their body and who their rheumatologist is. Wow. I know all this information about you but I don't know your name, where you live, what you do for a living, for fun, if you're married, children, grandchildren???? But I know that yours is a very 'worse case scenario', that you've done dyalisis and almost died, that you're on 6mg of Prednisone but you were on 45mg at one point, etc. It is so sad that, at least in this atmosphere, my experience is that people define themselves by their Lupus. On the one hand, I totally understand. When Lupus caused me to close my Private Practice, give up all extra curricular activities and be house or bed bound for nearly a year, I was the disease. It consumed me every waking hour and woke me most sleeping hours. Then it got really bad and I spent five weeks in the hospital concluding with an esophagectomy and a stomach pull through to make a new esophagus. By this time, I had had ten operations in 12 months. I was sick of what Lupus was doing to my body. Lupus was controlling not only my every move, but my ability to take in noursihment (no food or liquid by mouth for four weeks), my ability to have any relationships as my hospital was an hour and a half away from my home so friends never came. My only visitors were my husband, my children and two very dear friends. The loneliness of this disease is for another day. But, back to being defined by the disease. I have come to the point where I don't want to be identified by having Lupus. I'm more than willing to talk about my Lupus and all the ways it has and still is impacting my ability to live a normal life and to keep up with relationships and friendships. I'm just struggling with how to interact with Lupus patients at meetings in ways that don't involve the disease. I need there to be room for both - for the person and for the disease.
I think that defining ourselves by our disease is a stage all Lupus (cancer, MS, etc) patients go through. I'm sure there are developmental milestones in the course of a chronic illness. By choosing to define ourselves by our disease, in some ways I think we are crying out for help - wanting, even if we are not aware of it, wanting people to know how bad our life is. We need them to 'get' the horror of how destructive and devastating Lupus is. But really, only those with Lupus will 'get' the horror. And we have to ask ourselves, how many people do we need to know how horrible our life really is. Sometimes it's a lot of people - particularly when you come from a fairly large family as I do. I keep asking myself as I traverse more tests and new findings, how much my friends need to know and why do I need them to know it - so they can help me or understand me or feel sorry for me or pray for me? Each one of these needs suggests, in my experience, a different level of self-exposure.
Okay, where I am? Tomorrow I go back to the Dr. to get test results. I'm really okay with that. What is bugging me more is how to initiate interactions at Lupus gatherings that have some hope of moving beyond the 'hi my name is Susie. I was diagnosed ten years ago, am always fatigured, and hurt from fibromyalsia ....". I need a good comeback that doesn't blow them out of the water - like "Gosh, you've been through a lot. What was your name? Oh, hi Lisa, I'm Susie and I'm really excited at how many people are here today." My mind is swirling - underneath this whole issue is my need and desire to find a few intelligent, solid, emotionally connected people who also have Lupus. I need them to be part of my life. None of my friends have Lupus. Nor do any family members. So when the disease rages, there is no one close to me that also knows the disease up close and personal. You know, one of the cool things about blogging or journaling, is that it always helps me define what the real issue is for me. After all, that's what matters most. I know enough to know that when someone's behavior bugs me, it bugs me because they are exhibiting a part of me that I don't want to acknowledge or admit to.
Getting bugged by defining oneself by the disease bothers me because I have defined myself by my disease and sometimes it feel like my disease is all that does define me. But I yearn for someone who doesn't lead with their disease and in order to find this person, I need to lead with my own life, not my disease.
My home care right arm helper is leaving for five months to nurse in a foreign country. I will and already do miss her sweet smile and her silly remarks. My daily life is being redefined since she is no longer here and I no longer have help at home. I want to really take in and remember how much I love and appreciate her work for me for the past almost four years. I am filled with gratitude that my husband has been able to provide for her out of our own pocket - no insurance help here. She's been a gift in my life and I'll miss her more than she'll ever know. I have been blessed by having her with me during the most devastating physical assults of Lupus. Now, I am better and she is moving on as she should be. Thank you, God for blessing me with her.
I just finished a video on stretching using the ball. It felt so good. I went into it very tired and somewhat sore. I came out of it feeling like I'm breathing more fully; like I can really feel my legs underneath me and more tired than when I began. I haven't compiled a list of my New Year's Resolutions, but were I to, daily exercise beyond walking would be near the top. Stretching; it's good for my body and good for my soul.
It's been a very bad few days for my hands - the pain in my joints has increased ten fold - I had to take pain meds for my hands for the first time. The only thing I did differently over the past four days is cleaning showers and vacuuming hard wood floors and carpet. My hands don't like it but it has to be done. My husband bought a Rumba self propelling vacuum robot - I hope it helps.
At the lupus walk awards luncheon my husband and I attended last Saturday, one thing struck me as it always does; at Lupus functions, people define themselves by their disease. In the first three minutes, most people tell you how long they've had it, how old they were when they were diagnosed, what the severest manifestation is in their body and who their rheumatologist is. Wow. I know all this information about you but I don't know your name, where you live, what you do for a living, for fun, if you're married, children, grandchildren???? But I know that yours is a very 'worse case scenario', that you've done dyalisis and almost died, that you're on 6mg of Prednisone but you were on 45mg at one point, etc. It is so sad that, at least in this atmosphere, my experience is that people define themselves by their Lupus. On the one hand, I totally understand. When Lupus caused me to close my Private Practice, give up all extra curricular activities and be house or bed bound for nearly a year, I was the disease. It consumed me every waking hour and woke me most sleeping hours. Then it got really bad and I spent five weeks in the hospital concluding with an esophagectomy and a stomach pull through to make a new esophagus. By this time, I had had ten operations in 12 months. I was sick of what Lupus was doing to my body. Lupus was controlling not only my every move, but my ability to take in noursihment (no food or liquid by mouth for four weeks), my ability to have any relationships as my hospital was an hour and a half away from my home so friends never came. My only visitors were my husband, my children and two very dear friends. The loneliness of this disease is for another day. But, back to being defined by the disease. I have come to the point where I don't want to be identified by having Lupus. I'm more than willing to talk about my Lupus and all the ways it has and still is impacting my ability to live a normal life and to keep up with relationships and friendships. I'm just struggling with how to interact with Lupus patients at meetings in ways that don't involve the disease. I need there to be room for both - for the person and for the disease.
I think that defining ourselves by our disease is a stage all Lupus (cancer, MS, etc) patients go through. I'm sure there are developmental milestones in the course of a chronic illness. By choosing to define ourselves by our disease, in some ways I think we are crying out for help - wanting, even if we are not aware of it, wanting people to know how bad our life is. We need them to 'get' the horror of how destructive and devastating Lupus is. But really, only those with Lupus will 'get' the horror. And we have to ask ourselves, how many people do we need to know how horrible our life really is. Sometimes it's a lot of people - particularly when you come from a fairly large family as I do. I keep asking myself as I traverse more tests and new findings, how much my friends need to know and why do I need them to know it - so they can help me or understand me or feel sorry for me or pray for me? Each one of these needs suggests, in my experience, a different level of self-exposure.
Okay, where I am? Tomorrow I go back to the Dr. to get test results. I'm really okay with that. What is bugging me more is how to initiate interactions at Lupus gatherings that have some hope of moving beyond the 'hi my name is Susie. I was diagnosed ten years ago, am always fatigured, and hurt from fibromyalsia ....". I need a good comeback that doesn't blow them out of the water - like "Gosh, you've been through a lot. What was your name? Oh, hi Lisa, I'm Susie and I'm really excited at how many people are here today." My mind is swirling - underneath this whole issue is my need and desire to find a few intelligent, solid, emotionally connected people who also have Lupus. I need them to be part of my life. None of my friends have Lupus. Nor do any family members. So when the disease rages, there is no one close to me that also knows the disease up close and personal. You know, one of the cool things about blogging or journaling, is that it always helps me define what the real issue is for me. After all, that's what matters most. I know enough to know that when someone's behavior bugs me, it bugs me because they are exhibiting a part of me that I don't want to acknowledge or admit to.
Getting bugged by defining oneself by the disease bothers me because I have defined myself by my disease and sometimes it feel like my disease is all that does define me. But I yearn for someone who doesn't lead with their disease and in order to find this person, I need to lead with my own life, not my disease.
My home care right arm helper is leaving for five months to nurse in a foreign country. I will and already do miss her sweet smile and her silly remarks. My daily life is being redefined since she is no longer here and I no longer have help at home. I want to really take in and remember how much I love and appreciate her work for me for the past almost four years. I am filled with gratitude that my husband has been able to provide for her out of our own pocket - no insurance help here. She's been a gift in my life and I'll miss her more than she'll ever know. I have been blessed by having her with me during the most devastating physical assults of Lupus. Now, I am better and she is moving on as she should be. Thank you, God for blessing me with her.
Wednesday, January 14, 2009
The Wind has Settled Down Inside and Out
January 14, 2009 Monday morning
I think this is a true confessions blog. We used to call it journaling and it was done with pencil and paper in a notebook we'd hide so no one would find it. Okay, I have better boundaries than to put all my most intimate feelings on the internet, but truth be told, the safety of anonymity that the blog provides does invite us to say in writing more than we would ever say face to face. Having said that, I am so grateful for the very few people in my life that feel safe enough to say out loud the words I am writing.
The Santa Ana winds have been blowing like crazy for the past week and I am done with them. They are quiet this morning which is why I want to write about winds settling down inside and out.
It's been a whirlwind of a 24 hours. My years on this planet, as a therapist, as a wife and mother and daughter and friend and mostly having simply lived on this planet for 50 some years and chosing to learn from living, (take a breath) I have learned and know that things change more quickly than our emotions can possibly follow. I know that when I am hit and knocked down by Lupus related stuff, that I will also be okay and regain a sense of balance and emotional stability. There are very few things in this world that really ruin a life. Yet sometimes the things that happen in the matter of a minute, an hour, a day feel like they are changing our life completely. And ten minutes or ten hours later, the emotional winds have settled and we are back into our job, cleaning the kitchen floor, running errands, walking the dog and emailing family and friends. It's the extreme feelings that are so hard for me to be okay with.
Yesterday was a day of doctors - never a good thing for me. We do as many appointments as we can arrange in a day because we travel an hour and a half minimum to our medical care by choice. But most days it is too many doctors or tests - too much of a reminder that Lupus has it's hold on my body even though I am in remission. Yet, right now, some 12 hours later, I feel emotionally okay. I am tired and sad. I am overwhelmed by the things I 'need' to do. But I am okay. How did I get from there to here? It surely wasn't planned. In fact it all happened because I spilled the soup. I spilled the soup and in that simple act, my best defense mechanisms were useless and I screamed and cried - not at the mess I made with soup but at the mess I feel my body is. I cried long, hardly audible words of exhaustion, helplessness and anger. I stood at my sink, held onto the counter and simply cried - real tears (that matters you know) real pain at not being able to control my body and hence my life. My poor husband walked into the middle of my breakdown - as if a 12 hour medical day - five hours of driving for him - wasn't enough - our toilet broke in the Master Bedroom when we got home and so he had to go get the parts to fix it - hint: It would be very difficult for me to not have the bathroom accessible as Lupus has left its' destruction in my bowels thank you so much -. Anyway, when he left I was mearly cranky and tired. When he returned I was an hysterical woman leaning over the kitchen sink screaming and crying. God Bless Him when he came in and wanted to help I told him no. He had the presence of mind to say that when he left I was mearly exhausted and spent but that now I was really hysterical - what happened while I was gone? I told him that maybe nothing happened and that maybe I spilled the soup. That was all I said and somehow he go it. He asked if he could hug me and I cried out that no I needed to cry thank you very much. So he sat in the family room close by and let me cry. Because both of us knew that crying was what I needed most. And that if we could both tollerate how helpless we felt in the moment and in the news from the doctor, that I would be okay soon. When I felt like I needed to pull it together and serve diiner, I did just that through tears and tearful exhales (what is that noise called - when your windpipe is spasming because of the deep crying yet you are trying to simply breathe or talk and it comes out in fits and spurts?). We turned on the new episode of "24" that we had recorded and watched it commercial free - I couldn't quite get lost in it which was what I wanted so I didn't feel so depressed. But once again, it was good that I didn't get lost in 24 because my helplessness brought me back to my knees with God to a place where I could honestly remind both Him and me that I am lost in the destruction of this disease and that I cannot do it on my own! I wanted Him to be a God that would listen to me and hear my cries and pleas and heal me - that He isn't that kind of a God. He never promised to heal me. He just promised to walk beside me every single minute of every single part of this disease. He walks with me even when I forget, He doesn't. He walks with me and that is the only place where I can find rest for my very weary soul - knowing He is holding on to me when I am discouraged, exhusted and wrug out. I went to bed and slept for 11 hours. That always makes the world a better place for me.
True confessions - no one knows that I have this blog. I haven't told my kids or my friends. My husband knows but he hasn't read it. I ask myself why I am not telling anyone yet. First and foremost, I want to be absolutely free to say what is in my mind and heart about this disease. And I worry that the truth is more than my kids and parents need to hear. It's already hard enough on them without going through the dips and droundings with me in real time. I also don't want to have to edit what I say so as not to upset or offend anyone - and I don't want to have to apologize for anything either. And I don't want to think about who might read what I write - I don't want to have to worry about their reactions or feelings because if my friends read this blog they will know more about my life and my disease than I have shared becasue their is a rawness that comes out when I write that doesn't come out when I am talking with someone. I simply want to be able to write what is real in hopes that somehow it will get out to you who also have your own horrid journey along this path of life called Lupus. That is the truth. I want to find you who suffer and struggle like me because of Lupus. I want to help you by giving you permission through my own ramblings to have your own ramblings - to know that I am out here struggling too - that I have many, many days that I simply feel ruined because of Lupus and that in those moments I must, I have to find a way to get through that myre to move just one or two steps so that Lupus is not taking over my life and destroying what might be out there for me this morning or this afternoon. Because when Lupus wins by destroying my day or my opportunity to connect with someone through a smile, a sweet unexpected compliment to a salesperson or a real life encounter with someone I love, Lupus really is destroying the soul of what my life is. My body is not my life. My body is simply the container that the Lord is using to house my soul while I am here on this Earth to do His bidding. My body that Lupus can destroy is only the container - it's the soup that I spilled all over myself and my stove that Lupus cannont take away. Sounds corny. Or deep. It just fits because I spilled the soup and it moved me back into owning my life in that moment.
Well, I could write so much more. But now I really must shower and dress and walk my puppy dog who is always here with me. I hope I can take the smile in my heart with me as I move into what lies ahead. I will try to remember. Spilled soup is what really matters.
I think this is a true confessions blog. We used to call it journaling and it was done with pencil and paper in a notebook we'd hide so no one would find it. Okay, I have better boundaries than to put all my most intimate feelings on the internet, but truth be told, the safety of anonymity that the blog provides does invite us to say in writing more than we would ever say face to face. Having said that, I am so grateful for the very few people in my life that feel safe enough to say out loud the words I am writing.
The Santa Ana winds have been blowing like crazy for the past week and I am done with them. They are quiet this morning which is why I want to write about winds settling down inside and out.
It's been a whirlwind of a 24 hours. My years on this planet, as a therapist, as a wife and mother and daughter and friend and mostly having simply lived on this planet for 50 some years and chosing to learn from living, (take a breath) I have learned and know that things change more quickly than our emotions can possibly follow. I know that when I am hit and knocked down by Lupus related stuff, that I will also be okay and regain a sense of balance and emotional stability. There are very few things in this world that really ruin a life. Yet sometimes the things that happen in the matter of a minute, an hour, a day feel like they are changing our life completely. And ten minutes or ten hours later, the emotional winds have settled and we are back into our job, cleaning the kitchen floor, running errands, walking the dog and emailing family and friends. It's the extreme feelings that are so hard for me to be okay with.
Yesterday was a day of doctors - never a good thing for me. We do as many appointments as we can arrange in a day because we travel an hour and a half minimum to our medical care by choice. But most days it is too many doctors or tests - too much of a reminder that Lupus has it's hold on my body even though I am in remission. Yet, right now, some 12 hours later, I feel emotionally okay. I am tired and sad. I am overwhelmed by the things I 'need' to do. But I am okay. How did I get from there to here? It surely wasn't planned. In fact it all happened because I spilled the soup. I spilled the soup and in that simple act, my best defense mechanisms were useless and I screamed and cried - not at the mess I made with soup but at the mess I feel my body is. I cried long, hardly audible words of exhaustion, helplessness and anger. I stood at my sink, held onto the counter and simply cried - real tears (that matters you know) real pain at not being able to control my body and hence my life. My poor husband walked into the middle of my breakdown - as if a 12 hour medical day - five hours of driving for him - wasn't enough - our toilet broke in the Master Bedroom when we got home and so he had to go get the parts to fix it - hint: It would be very difficult for me to not have the bathroom accessible as Lupus has left its' destruction in my bowels thank you so much -. Anyway, when he left I was mearly cranky and tired. When he returned I was an hysterical woman leaning over the kitchen sink screaming and crying. God Bless Him when he came in and wanted to help I told him no. He had the presence of mind to say that when he left I was mearly exhausted and spent but that now I was really hysterical - what happened while I was gone? I told him that maybe nothing happened and that maybe I spilled the soup. That was all I said and somehow he go it. He asked if he could hug me and I cried out that no I needed to cry thank you very much. So he sat in the family room close by and let me cry. Because both of us knew that crying was what I needed most. And that if we could both tollerate how helpless we felt in the moment and in the news from the doctor, that I would be okay soon. When I felt like I needed to pull it together and serve diiner, I did just that through tears and tearful exhales (what is that noise called - when your windpipe is spasming because of the deep crying yet you are trying to simply breathe or talk and it comes out in fits and spurts?). We turned on the new episode of "24" that we had recorded and watched it commercial free - I couldn't quite get lost in it which was what I wanted so I didn't feel so depressed. But once again, it was good that I didn't get lost in 24 because my helplessness brought me back to my knees with God to a place where I could honestly remind both Him and me that I am lost in the destruction of this disease and that I cannot do it on my own! I wanted Him to be a God that would listen to me and hear my cries and pleas and heal me - that He isn't that kind of a God. He never promised to heal me. He just promised to walk beside me every single minute of every single part of this disease. He walks with me even when I forget, He doesn't. He walks with me and that is the only place where I can find rest for my very weary soul - knowing He is holding on to me when I am discouraged, exhusted and wrug out. I went to bed and slept for 11 hours. That always makes the world a better place for me.
True confessions - no one knows that I have this blog. I haven't told my kids or my friends. My husband knows but he hasn't read it. I ask myself why I am not telling anyone yet. First and foremost, I want to be absolutely free to say what is in my mind and heart about this disease. And I worry that the truth is more than my kids and parents need to hear. It's already hard enough on them without going through the dips and droundings with me in real time. I also don't want to have to edit what I say so as not to upset or offend anyone - and I don't want to have to apologize for anything either. And I don't want to think about who might read what I write - I don't want to have to worry about their reactions or feelings because if my friends read this blog they will know more about my life and my disease than I have shared becasue their is a rawness that comes out when I write that doesn't come out when I am talking with someone. I simply want to be able to write what is real in hopes that somehow it will get out to you who also have your own horrid journey along this path of life called Lupus. That is the truth. I want to find you who suffer and struggle like me because of Lupus. I want to help you by giving you permission through my own ramblings to have your own ramblings - to know that I am out here struggling too - that I have many, many days that I simply feel ruined because of Lupus and that in those moments I must, I have to find a way to get through that myre to move just one or two steps so that Lupus is not taking over my life and destroying what might be out there for me this morning or this afternoon. Because when Lupus wins by destroying my day or my opportunity to connect with someone through a smile, a sweet unexpected compliment to a salesperson or a real life encounter with someone I love, Lupus really is destroying the soul of what my life is. My body is not my life. My body is simply the container that the Lord is using to house my soul while I am here on this Earth to do His bidding. My body that Lupus can destroy is only the container - it's the soup that I spilled all over myself and my stove that Lupus cannont take away. Sounds corny. Or deep. It just fits because I spilled the soup and it moved me back into owning my life in that moment.
Well, I could write so much more. But now I really must shower and dress and walk my puppy dog who is always here with me. I hope I can take the smile in my heart with me as I move into what lies ahead. I will try to remember. Spilled soup is what really matters.
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