tag:blogger.com,1999:blog-73691128816751081742024-03-14T01:34:00.370-05:00Walking Through Foga christian perspective on the joys and heartaches of living with fibromyalgiaUnknownnoreply@blogger.comBlogger33125tag:blogger.com,1999:blog-7369112881675108174.post-53117332709052897412016-11-23T19:13:00.002-06:002016-11-23T19:13:41.481-06:00The End of an Era - Changing Doctors<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: inherit;">I went to my doctor today, for what will be the last time. After fighting with different insurance companies for the previous couple years, I finally found myself with no insurance options that would cover my specific doctor. After checking all my options I ultimately resigned myself to striking out to find a new PCP.</span></div>
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<span style="font-family: inherit;">While this may seem insignificant to a lot of people, changing doctors for a "spoonie" is a big deal. It can take a lot of effort and expense to find a doctor who will take fibromyalgia seriously and have the patience to help you manage it on an individual level for the long run.</span></div>
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<span style="font-family: inherit;">I find myself reflecting back on the intense stages of life that my doctor has seen me through, and I can only walk away from the past 4 years thanking God for putting her in my life at exactly the right moment to help me cope and gently walk me through some of the roughest days of my life thus far. </span></div>
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<span style="font-family: inherit;">Each time that I previously thought I would have to give up my doctor, I went through an emotional roller coaster of fear and anxiety, feeling hopeless. This time, I simply accepted it. It was time. As I saw her this afternoon to get a medication refilled and to check in, I was able to thank her for the truly compassionate care I've received from her and the staff. I broke the news that I would no longer be able to keep coming to their clinic. In response to my news, she broke her own revelation--that she would be moving on as well to a different clinic. I thanked her for her help and wished her all the best.</span></div>
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<span style="font-family: inherit;">All I can say is--thank you, God, for keeping her there as long as I needed her, and giving me grace for the changes to come. It's no exaggeration to admit that leaving her office today felt more emotional than leaving my college campus after graduation. Normal people probably aren't typically that close with their doctors, but when so much of your life is impacted by what happens at the doctor's office, and you find the first person in a white coat who offers a listening ear and believes you when you share your symptoms and struggles--that relationship is not lightly replaced, and I am confident it won't be. But I have hope that I am now better equipped to be my own advocate in the medical world, and I am ready to face building a new relationship with a new doctor.</span></div>
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<span style="font-family: inherit;">Those of you who spend enough time with your doctor to reach first-name basis know the significance of this transition. For those of you who don't, I genuinely hope you never find out.</span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7369112881675108174.post-86442349840204475582016-10-22T14:14:00.000-05:002016-10-22T14:14:06.819-05:00Fibromyalgia and Tattoos<div dir="ltr" style="text-align: left;" trbidi="on">
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I don't know if this is a common issue, but it's come up enough in recent months that it seems worth posting about. If you have personal experience in this area, I'd welcome comments and feedback, here or on the facebook page <a href="http://www.facebook.com/thefogblog" target="_blank">Walking Through Fog</a>.</div>
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You may have guessed by this point, but the "issue" I'm referring to is getting a tattoo while dealing with chronic pain. If you are a "spoonie" and have considered getting a tattoo, it's possible you've faced the same self-doubts and/or others asking some version of the question, "Why would you put yourself through that kind of pain voluntarily when you are already dealing with pain you can't control on a regular basis?" I know after I started physically recovering from my miscarriage last November, these are thoughts that dominated my perspective. <i>How much would it hurt? Would it make my pain from Fibromyalgia worse? Would it make it harder to get my doctor to take my pain seriously? Would it create confusion and contention with friends or family who already seem skeptical about my "condition"? </i></div>
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I can tell you from personal experience that these and many other questions rattled around my mind as I thought constantly about whether or not to get some kind of memorial tattoo for the child we'd lost. Yet, in spite of all my fears and concerns about the ramifications of this decision, I still kept coming back to the intense desire to mark the life-altering event with a visible "battle scar" to show the tremendous struggle I'd come through. Eventually, through discussions with my husband and some close friends, I came to the conclusion that the risks were worth it.</div>
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Getting My First Tattoo</h3>
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So, on August 5, 2016, I entered a local tattoo parlor (that I'd previously scouted out) and sat for an hour while a friendly professional tattoo artist applied his considerable skill to creating exactly the design I'd brought in.</div>
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The pain levels (which I'd tirelessly Googled and compared previously) were surprisingly minimal, and with some moderately distracting conversation, I was surprised when he announced the tattoo was complete.</div>
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Having heard stories of people being in such pain that they passed out, or had to break up their ink into separate sessions, I was ready to stretch my limits just to get through. It turned out to be relatively easy compared with my daily experience of chronic pain and fatigue.</div>
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Coming out of this experience has left me with a few questions. Why was it so important for me to get this tattoo? Why was it such a "non-event" on the pain scale when compared with Fibromyalgia symptoms? I've come to a few observations that I think help explain these reactions.</div>
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Why is it so significant? </h3>
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<tr><td class="tr-caption" style="text-align: center;">My tattoo in memory of our miscarried child "Kai"</td></tr>
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One thing that this experience has shown me is that there is something inherently powerful about having long-held invisible pain made visible to those around you. <u><b>As someone who struggles with pain that is largely invisible to the rest of the world, it is refreshingly therapeutic to express visibly how your pain has shaped and mingled with your identity.</b></u></div>
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For those who aren't facing chronic pain, the best comparison I can reach is the mainstream experience of getting a "memorial tattoo" which is generally to remember a loved one who has passed. The loss of a close friend or family member becomes part of your journey and shapes how you move forward for the rest of your life.</div>
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This was the case for my tattoo. God did a lot of work in me through this process, and sadly in our culture miscarriage has largely become as invisible a grief as the chronic pain of Fibromyalgia or Rheumatoid Arthritis. In giving expression to the tragedy of losing an unborn child, I found strength to incorporate that experience into the rest of my life.</div>
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In addition to giving voice to the invisible struggle, I believe that there is a possible explanation for the pain of a tattoo not even comparing with the chronic pain of autoimmune diseases. While our culture stereotypes chronically ill people as weak and sickly (not able to cope with even normal stimulii), it simultaneously portrays getting a tattoo as an incredibly tough, painful experience. Reality has taught me this could be backwards. </div>
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Living everyday with pain that will not subside is a tough, painful experience. On the other hand, getting a tattoo in a relatively common area (excluding the obviously very painful ones) like an arm or a leg is not necessarily that painful. It can be, depending on your personal pain tolerance and the artist's skill level, but it is not the torturous process that mainstream America has decided to portray it in pop culture.</div>
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Why does this matter?</h3>
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So, why am I bothering to overthink all this? I think this can be significant for a few reasons. <u><b>First, it reminds me that facing chronic pain does not make me a weak person.</b></u> Getting a tattoo was a very empowering experience, and it left me feeling that at least this time, fibro didn't win. Being sick does not mean I have to stop living my life. </div>
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<b><u>Second, it forces me to face culture's expectations for me as someone who struggles with chronic health issues.</u></b> I do not use a wheel chair or oxygen. I don't have a noticeable limp. If you just saw me on the street, I would look fine. By doing this, I get to define what my condition looks like. I get to look good without feeling guilty, or feeling like a poser. I am sick, and I don't look "sick." I know, it's crazy, right?</div>
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<u><b>Third, it gives me a greater compassion for people who make decisions I don't understand.</b></u> There are millions of people around the world who are dealing with situations and decisions I haven't had to face. Just as not everyone will approve of getting a tattoo, I won't be able to relate to other people's decisions. That's okay. I am willing to give them space to grieve and process in their own way. I don't have to make the same decision to be able to appreciate the person making it.</div>
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While some people may shake their heads at seeing my tattoo, without knowing the story, and assume I'm just one of those millennials who hopped on the ink bandwagon, I know the significance of my decision. I am perfectly content to live the rest of my life with this particular battle scar visible on my arm.</div>
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Any other spoonies out there with tattoo stories and experiences you'd care to share? I'd love to hear your stories.</div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7369112881675108174.post-69882410363330004762016-06-06T20:11:00.001-05:002016-06-06T21:04:23.437-05:00The Value of Relationship<div dir="ltr" style="text-align: left;" trbidi="on">
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<i><span style="font-family: inherit;">I've talked a lot in this blog about the way relationships shift or die out from complications relating to our chronic conditions, but in this post I'd like to discuss the flip-side of that issue. I'd like to tackle how cultivating deep relationships can actually prove to be a healing aspect on your journey through pain and illness. -ktg-</span></i></div>
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<span style="font-family: inherit; font-size: large;">Pain is a difficult challenge on the best of days, but what many healthy people don't realize is often the most crippling thing about chronic pain is the utter isolation it creates. When other people your age are off making friends, growing in their chosen career, starting families, and living their lives, you are managing doctor appointments, counting prescriptions to see if you have enough to last to the end of the month, and trying to decide how many spoons you're willing to spend on taking a shower for the day.</span></div>
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<span style="font-family: inherit; font-size: large;">This makes meaningful relationships difficult, but they are no less important. If anything, the extreme strain put on relationships from health problems actually highlights the fact that we are created as social beings. We are not designed to live by ourselves without a social support structure in place. We are meant to live in community and share our lives with others as they do with us.</span></div>
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<span style="font-family: inherit; font-size: large;">This requires purpose and intentional choices. Deep, meaningful relationships will not just naturally develop for most people. You do not suddenly wake up one day and magically find lifelong friends popping up in your yard with the dandelions. Maintaining and sustaining relationships of this magnitude requires emotional investment, physical presence, gut-wrenching empathy, and in most cases a whole lot of time. Just because you've known someone's name and address for twenty years does not mean you know them. Just because you see someone everyday does not make you good friends. Years of small talk is really just...a whole lot of small talk at the end of the day. I don't know about you, but I don't feel especially close to people I can only discuss the weather with. </span></div>
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<span style="font-family: inherit; font-size: large;">A difficult reality I am coming to these days is that true friendship is deciding whose struggles you're willing to take part in. Whose burden are you willing to take a piece of? Whose hopes and dreams are you willing to listen to for the fiftieth time? Whose sadness are you willing to weep over? Whose life do you want to care about? Whose children do you love like your own? Who will you spend time getting to know, even if it's hard? </span></div>
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<span style="font-family: inherit; font-size: large;">This is relationship. This is what truly creates family. This is what makes those nights of sitting awake at 3am wishing for the comfort of sleep bearable. This is what makes you continue to sort out the pills when it would be easier to just give up. This is what makes the "good pain days" worth waiting for. This is what makes us human.</span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7369112881675108174.post-86956221283302976152016-03-29T16:31:00.000-05:002016-04-07T15:14:40.653-05:00A Psalm for Brain Fog<div dir="ltr" style="text-align: left;" trbidi="on">
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I was reading through a favorite Psalm recently that has long been a source of comfort and encouragement in rougher periods of my life. This time, however, something new caught my attention, and it seemed worth sharing with the rest of the Spoonie community since I know we can always use some more encouragement. :)</div>
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I am talking about Psalm 131. I'll include the text below in the ESV so you can see what I'm talking about.</div>
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<u>Psalm 131 (ESV)</u><br />
<i>O LORD, my heart is not lifted up;</i><br />
<i>my eyes are not raised too high;</i><br />
<i>I do not occupy myself with things</i><br />
<i>too great and too marvelous for me.</i><br />
<i>But I have calmed and quieted my soul,</i><br />
<i>like a weaned child with its mother;</i><br />
<i>like a weaned child is my soul within me.</i><br />
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<i>O Israel, hope in the LORD</i><br />
<i>from this time forth and forevermore.</i><br />
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So, I realize there's a lot there, and I don't really want to take the time to get into the reference to Israel and whether or not the church is "today's Israel." I would like to simply focus on the similarities being expressed by David and the struggles the chronically ill community faces.</div>
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He begins by being honest about his emotions and where he is at. He is obviously struggling and discouraged by something. Whatever his struggle is has overwhelmed him, and he is convinced that it is too much for him to handle. Sound familiar, spoonies? He is known as one of the Old Testament figures who danced and sang before the Lord in public, but this is obviously not one of those times. He is deeply troubled, and even as a king and leader of his people there is nothing he can do to make it go away. I read those words, and no amount of history can keep me from literally feeling that type of struggle. David knows pain well, and I am not alone in my struggle. </div>
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Moving forward, he talks about not spending his time trying to figure out things that are just too difficult for him to understand. While you could take this many ways, in the context of his psalm and for our purposes, I think it's fair to say there is correspondence to brain fog. He may not have struggled with a chronic disease, but all of us who are can readily relate to feeling that there are things (sometimes everyday details) that are too hard for our brain to process that moment. It really is ok to just set them aside. Why? Because like a nursing child who has been satisfied with his mother's milk, all of our stresses and tensions do not rely on us to come up with a solution for them. </div>
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As believers (especially as the walking wounded of chronic conditions) we can rest heavily on the welcoming arms of Jesus who never gets brain fog, never runs out of energy, and never tells us to just "suck it up" or "walk it off." We can be confident and at rest within our souls, even when our bodies refuse to be rested. </div>
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O Spoonies, hope in the LORD from this time forth and forevermore.</div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7369112881675108174.post-16910141807234633952015-12-07T17:56:00.000-06:002015-12-07T17:56:44.045-06:00Fibromyalgia and Miscarriage<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: inherit;">I'm a little scared to start writing this post, because I honestly don't know what will come out if I start typing. But I feel compelled to write and communicate about this in some way, so here we go...</span></div>
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<span style="font-family: inherit;">My husband and I decided to start trying for children in October. It was a big deal for us, because we'd both agreed before marriage that we didn't think children were a good idea for us. The fact that God had turned this decision on its head and brought both of us around to a point of seeing ourselves as parents and desiring it so strongly only convinced us more than ever that it was the right choice. Then, in possibly the shortest season of "trying to conceive" known to mankind, we started celebrating as three at-home pregnancy tests came back positive. It seemed too good to be true; everyone had told us to be patient, that it could take a while. So, they were as shocked as we were when we got pregnant the first month of trying.</span></div>
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<span style="font-family: inherit;">We'd been concerned prior to deciding to go forward, because I have fibromyalgia and we weren't sure pregnancy would combine well with that. We also wondered if parenting would be possible for us since my husband is working full-time and I am not reliably healthy enough to run everything on the homefront by myself.</span></div>
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<span style="font-family: inherit;">But regardless of these concerns/fears/hesitations, we became convinced that somehow it would work out. Somehow we would beat the odds and getting pregnant so soon seemed like confirmation that we were making the right decision. I was so excited about the positive test results, but I was also told I should visit the doctor and get confirmation.</span></div>
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<span style="font-family: inherit;">So I went, and they did tests. The blood test seemed a little low, but we decided it just meant we were a little earlier along than we'd thought. They had me come back three days later just to be safe and test again. And i did come back and test. Thinking little of it, I gave more blood and happily announced to the world that we were parents.</span></div>
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<span style="font-family: inherit;">When the test results came back I was devastated. The levels they were checking were supposed to be doubling or tripling but instead they'd fallen by more than half. I couldn't believe it. Reading the message from the doctor I realized slowly that our baby wasn't going to make it. Such a short time into parenthood and we were already losing him. I say him because my husband and my mom both thought it was going to be a boy. Lacking evidence to the contrary that's how I've chosen to remember him as a person. A unique individual. Too beautiful for this world. Conceived in intimate love, and born in heaven with perfect eyes--seeing Jesus at their first glance.</span></div>
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<span style="font-family: inherit;">In the aftermath of the test results we waited. It was horrific and miserable waiting for the cramping pain to begin. Less than 24 hours after getting our test results, I woke up early in the morning and felt the first pangs of what would last late into the night and become an endless ordeal of pain and emotion and fear and eventually result in a pseudo-labor that brought out the body of our precious child.</span></div>
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<span style="font-family: inherit;">It's hard to explain the emotional ramifications of delivering a baby almost 6 weeks along on your own in the bathroom and putting a tiny face and shape to the concept that has seemed so abstract up to that point. It's even harder to describe the emotions and maternal hormones that drive you to search through bloody tissue in a desperate attempt to find the body of the child you'd already begun to love...only to accidentally destroy it by trying to hold him once to say goodbye.</span></div>
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<span style="font-family: inherit;">There aren't words for the depth of brokenness felt afterward. I can only say that I feel irreparably shattered. My heart is incomplete, and I don't know how to get back to a point where it does not ache uncontrollably. There are moments in the day when I finally distract myself sufficiently to put it down for 20 minutes or so, but as soon as the opening credits of the episode begin to roll across the screen, or I sign off from the conversation, within seconds the realization is back. I am a childless mother. My baby was here, and now he's gone. The emotions that follow make you feel like it's all happening again back from the beginning. So it continues each time. Every morning is a moment of forgetting followed by the crushing realization one more time. It's true. It all really happened. He's not coming back.</span></div>
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<span style="font-family: inherit;">The comforting aspect to this experience has been realizing just how deeply we are cared for by those who love us. People from all around the world, and specifically close to where we live have reached out to us and grieved with us. Women who have been through this experience themselves, sometimes on multiple occasions, have poured out their deepest heartache in an attempt to share my devastation and ease the way forward.</span></div>
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<span style="font-family: inherit;">People have brought us food delivered with a warm hug and tear-stained eyes. They truly are weeping with those who weep. Others have sent notes, messages, cards, and just generally tried to show us that they care and want to help. Still more have spent hours on the phone sitting with us in the silence and reminding us that we are not alone. The depth of compassion that this wound has brought out in our friends and family is almost surreal. When I think I am going to hit the breaking point, someone else steps in and gently pulls me out of it by the hand. This is grace. This is what shows me I will make it through one more night. This is how I know that this darkness won't last forever. These are the people who have been the hands and feet of Jesus to me.</span></div>
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<b><i><span style="font-size: x-small;">Author's Note: This was written November 17th.</span></i></b></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7369112881675108174.post-89586394254866985722015-11-01T18:16:00.000-06:002015-11-01T18:17:05.542-06:00Last Minute Cancelled Plans and Tackling Goals<div dir="ltr" style="text-align: left;" trbidi="on">
<i>Two-part post this time... Enjoy! :)</i><br />
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<span style="font-family: inherit;">I was supposed to attend a wedding this past weekend. I had my tickets for traveling purchased. I had planned for several months in advance with great anticipation. This was going to be a very special weekend. Then fibro decided that my plans needed to change. I took too long getting over a respiratory flu bug, and followed it up by having a frustrating flareup and taking an additional week to get back on my feet. By the time I could find the strength to even leave the apartment for a short duration it was crunch time and big decisions had to be made. I had to choose to go and risk spending the whole time traveling and there being sick or surrender to the flareup and miss the whole thing. </span></div>
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<span style="font-family: inherit;">As you may have guessed from the first line, after great internal debating, I made the disappointing decision not to go. I have written before about being realistic about the fact that you will have to occasionally cancel your plans due to flareups, but it has been a long while since I have missed anything of this importance for health reasons. It is easy to say, but not as easy to work through in real life. </span></div>
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<span style="font-family: inherit;">Thankfully, I was still able to see some of the beautiful pictures on facebook and plan to attend a closer reception for the couple later on this year, but it was a stark reminder that there are times when my condition gets the upper hand, and I simply have to make a wise decision no matter how much I want to disregard it and do what I want no matter the consequences. It's not fun, but it's a fact of living with a chronic condition. </span><br />
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<span style="font-family: inherit;">When you are running short of spoons anyway, you cannot afford to budget yourself into a severe deficit without a contingency plan. Your supply of spoons is not the federal government, it will not allow you to just keep raising the debt ceiling--at some point you will just crash and cease functioning. It is always best to avoid this result, but it is particularly problematic if it happens while you are hundreds of miles from home and traveling alone.</span></div>
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<span style="font-family: inherit;">On the other hand, while it was a discouraging week in regard to physical health and missing out on exciting family events, it has not meant I am crawling in a hole and waiting for the flareup to go away. I have found that when one aspect of my strength and energy is taxed beyond endurance, rather than ignoring the lack of energy it can be more effective to take the battle to a different front.</span></div>
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<span style="font-family: inherit;">In this case, while I have been too sick to do any extensive traveling or even getting out of the apartment much over the past couple weeks, it has been an intensely busy season for my mind. November 1st marked the beginning of NaNoWriMo which I am participating in for the first time this year. Just for fun I've included an automatic word tracker along the side of this blog that is automatically updated each time my word count goes up, so you can track my progress if you're interested.</span><br />
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<span style="font-family: inherit;">I am also working on my first non-fiction book based on this blog that will allow me to dig a little deeper into some of the more helpful posts from the past couple years. In the middle of all of that are some pretty lofty goals that I have never successfully completed before, and there are some I have never even tried.</span></div>
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<span style="font-family: inherit;">It doesn't change the fact that I couldn't make it to the wedding I was hoping to go to, but it does help me keep my brain churning and it does help me practice working towards goals that once seemed impossible. There's no guarantee that I'll actually finish the 50,000 word goal for NaNoWriMo in the month of November, and there's no assurance that the book based on this blog will ever be a best-seller, but these are two things that have always been goals I wanted to pursue. </span></div>
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<span style="font-family: inherit;">My takeaway from this week has simply been: <b><u>don't let discouragement in one area keep you from making progress in another. Make progress where you can. </u></b> If you need to slow down in one aspect, start working on something else. Even if you don't hit your goals, it is good to keep pushing towards them. If I don't hit the 50k words this year, I will try again next year. :) <u><b>The goal is to keep going--whatever that looks like.</b></u></span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7369112881675108174.post-73467839138556084262015-10-02T00:11:00.000-05:002015-10-02T00:11:21.950-05:00Grieving Our Loss<div dir="ltr" style="text-align: left;" trbidi="on">
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We live in a society that grieves its losses. Parents die, and we mourn, and rightly so. Loved ones leave us too soon, but would it ever be long enough? But human death is not the only loss that we mourn. We mourn the death of relationships, the death of childhood innocence, the loss of a beloved job, or the loss of a faithful and loving family pet. Whatever the loss, we take our time getting through it. We need time to transition to our new normal. There are stages, and sometimes we don't go through them as gracefully as we would like to think. </div>
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In a way, this same process must happen when you face the reality of entering the world of chronic illness. I apologize for the lateness of this post; it really should have been one of my first, and that seems so obvious now, but I can't go back and change that now. I can only share the benefit of some painful years of experience and what I have learned from them as a result.</div>
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When you start to realize just how sick you are, and that those aches and that fatigue aren't just going to go away with a decent night's sleep or a couple extra naps, it takes a while for the weight of that new state of being to sink in. You are used to being strong. You are used to being healthy. You used to be reliable at least. Now you're afraid to even plan a quick trip to the store for fear of living with the disappointment of canceling on yourself for the rest of the day. You are used to living as a healthy person in a healthy person's world, but the truth is, you aren't that person anymore. In a way, it is very similar to grieving the loss of death. You mourn the death of the life you once knew. The life you assumed you would have. The life you desperately still want, but can't have. The life your friends and family still have that you feel left out of.</div>
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It's not a quick process, and it's certainly not an easy adjustment. It's long and painful. It involves a lot of mistakes and forgetting "how things are now." But it also involves a lot of paying for that forgetting. When I've tried to explain these rapid changes to some people, particularly those older than me, they often try to find common ground by relating it to the changes they felt as age crept in, but often their good-natured attempts at relating to me feels like a dismissal. <i>Oh, I know exactly what you mean, only mine is worse... You think you feel pain and fatigue now? Just wait until you're my age... You're young, what are you complaining about? I remember when I could...</i> </div>
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Sadly, the people I can relate to the best dismiss me, because I look 30 or 40 years younger. What they don't understand is that while they had those 30 or 40 years to gradually adjust to their new limitations and make memories, I had maybe 3 or 4 years tops. It practically hit me before I knew what young adulthood was. Instead of looking back with longing at my early 20's I'm wondering what they were supposed to feel like. </div>
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Mine were full of pain and trying to pretend I could keep up with the rest of the people my age. Mine involved a lot of fighting with depression and anxiety wishing I could feel as carefree as many of my friends looked. Mine were heavy. I don't say this to complain. You can find an earlier post all about the idea that <a href="http://walkingthroughfog.blogspot.com/2014/05/fibro-stole-my-twenties-or-did-it.html" target="_blank">Fibro stole my 20's</a>...</div>
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What I am trying to communicate is that losing good health is a loss that is heavy and must be grieved in order to process your new normal. Some people try to live in denial as if they are still healthy, and they run themselves and their families into the ground trying to keep themselves alive and functioning, because they won't admit they are sick. Others get angry and will not find joy in the suffering, because this is not the road they felt entitled to. Still more try to bargain their way into pseudo-health so they can pose as healthy-ish. </div>
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See what I'm getting at here? There are people in all sorts of "stages of grief" about their conditions. The point is not to condemn those who are struggling their way through it, because I have been in all of those places and they all take time. The goal is simply to eventually come out to the place of acceptance where I stop fighting against who I am and how I am made and stand open-handed before God accepting His will for my life. Does this mean I stop trying to be as healthy as I can? No. Does this mean I stop trying to be as active as I can without being self-destructive? No. Does this mean make no plans because the disease will just force me to cancel anyway? No. This means my emotional and spiritual well-being do not depend on God healing me at some point and coming down to apologize for screwing up in how He designed the course of my life. </div>
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I know this sounds a little over the top, but there have been points when I felt like that was what it would take to make me ever ok again. I am not there now, and I thank God for bringing me out of it. It's easy to try to either rush through the process or get bogged down somewhere along the way. Here's a list of a few observations I've made from my own journey through this.</div>
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<u style="font-weight: bold;">1. There's a fine line between encouraging someone to keep working through the process and trying to rush them through your schedule for their grief.</u> As with death, people grieve at different speeds and in different ways. Having gone through this myself and watched others, I know from both sides it is incredibly difficult to tell with some people whether they are in a healthy place of the grieving process or whether they are just stuck. As a rule of thumb, I try to err on the side of being supportive and empathetic rather than assuming they're just being lazy and self-indulgent. Often if they need a push to keep going, God will find a way to do that without me manufacturing it myself.</div>
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<u style="font-weight: bold;">2. Don't push someone through one stage if you're going to let them soak in another one.</u> The example that comes to mind in this is the all-too common example of Christians who seem to have no problem with a chronically ill believer who gets stuck in the denial stage and tries to do too much, because it seems spiritual. But when that same believer eventually hits the anger stage, or perhaps a really severe bout of depression, they are suddenly expected to snap out of it. Denial of a serious problem is not more spiritual than trudging through depression as a result of it or being angry about it. They are natural reactions to traumatic circumstances, and should be viewed as such.</div>
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<u style="font-weight: bold;">3. Don't try to rush yourself through it.</u> The previous two points were directed at others, but this one gets a bit more personal. It can be tempting when you're in the middle of this process to feel a lot of pressure to rush yourself through these reactions, possibly skipping most of them in an attempt to give the "right" answer. What that mindset is perhaps omitting is that David in the Psalms had no problem expressing his honest responses to traumatic events. He had times when he was angry at the evil being done to him. He had many bouts of depression. It doesn't seem a stretch to say he tried bargaining, and the rest of it too. </div>
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The Bible doesn't teach us to stuff our emotions in order to produce Christian robots who always give the textbook answer and feel nothing. The Bible was written by real people with emotions, for real people with real life events. As I would say to a woman whose husband just died..."Give yourself time and space to grieve, however that looks for you." This is something that will change the rest of your life; don't underestimate that.</div>
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<u style="font-weight: bold;">4. Extend grace to those around you.</u> As humans we tend to judge and evaluate everything and everyone we come in contact with. Just this once, it would be great if we could focus intently on treating those around us, particularly those who might be more susceptible to these issues with gentle and compassionate care and grace. I am not talking about walking on eggshells around each other, but simply about speaking lovingly to each other instead of constantly looking for something wrong in each other. You don't know how many people you interact with everyday are dealing with loss that they don't even have the words to share with you, but kind words and gentle compassion go a long way towards helping them heal.</div>
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<u style="font-weight: bold;">5. Be patient.</u> I can't say this one enough. Getting diagnosed, trying new medications, switching doctors, getting tested for conditions you've never heard of, these are trying experiences for anyone. Everyone involved needs to extend as much patience as they possibly can with each other. There will be hurt feelings, and there will regretted words, but the more patience you show intially the fewer pieces you have to pick up later and put back together. </div>
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There's a lot more that I could say on this. Maybe I'll write another post on it later, but for now this is enough to start the conversation and the thoughts swirling. As people we somehow think that our losses and our grief are not as bad as others or are embarrassing to share with others, so we try to shoulder them alone, and we end up miserable and isolated. We weren't meant to handle this type of burden alone. Scripture tells us about the three-strand cord that isn't easily broken, or the two who are better than one, because when one falls the other can help him up. It doesn't say the other scolds him for falling. The person who falls when he's alone, just falls. </div>
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Chronic illness is not as flashy as cancer or other potentially terminal conditions, but it still drastically affects the people who face it. It doesn't usually kill its victims; it just makes them wish they were dead after years of dealing with the symptoms. As a society, we are largely afraid to face pain head on. We try to hide it with jokes or nuances. It's time to do the hard thing. the brave thing. It's time to take time to grieve this loss, take the time to cry or journal or take a quiet drive or whatever you need to do, and however long that takes, you should know, you are not alone. Find someone who will grieve it with you. Life is too heavy to face this alone.</div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7369112881675108174.post-6273253325378955932015-09-12T04:04:00.000-05:002015-09-12T04:04:07.890-05:00Working through Betrayal from your own Body<div dir="ltr" style="text-align: left;" trbidi="on">
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This may not make a lot of sense to readers who are generally healthy, but for those of you who have been dealing with the emotions and discouragement that accompanies chronic disease for any length of time you will know exactly what I'm talking about. I'm going talk about those times when we feel betrayed by our own bodies...</div>
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You might be reading this thinking--what? That sounds kind of like an odd thing to say, but let me explain. Typically a normal person spends the majority of their lifetime being healthy, punctuated with occasional bouts of disease. In that sense, they depend on their body to have a normal amount of energy for them. They expect to wake up feeling refreshed after a solid night of sleep, and barring a temporary condition, they can go throughout the majority of their lives without having to think too deeply about whether or not they have enough energy to make it through another day. Like I said, this is our normal person. Then you switch to someone whose health is not so normal for whatever reason.</div>
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This person spends the majority of their lifetime fighting to get their body to cooperate in order to accomplish the things they need to get done, whether for their job or their family. They are constantly feeling stressed when people around them expect them to go at a normal productivity rate, and they can't. Or they feel the social pressure to make plans to go out with friends or family only to have to cancel at the last minute due to feeling like they wish they were dead. In these cases just described, they wanted to trust that their bodies wouldn't let them down (and by extension those counting on them), but many times that's not how it turned out. They tried depending on their bodies, and they were disappointed. Then they were disappointed again and again and again. </div>
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Finally, they just stopped depending on their body to function normally. They expected it to fail them, because it had done so many times in the past. They just had to find a way to get things done regardless of their physical pain and fatigue, but that didn't lighten the emotional weariness of having fought for so long only to eventually acknowledge that their body couldn't be trusted.</div>
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It might seem like a small part of the fight, but for those of us fighting it, it's not. The psychological effect of distrusting and eventually expecting your body to give out on you makes it hard to have the confidence to make any plans. It makes it nearly impossible to hold down a job, and that social life becomes Netflix on the couch with your blanket and pillow (they never get upset with you for cancelling). </div>
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It's hard to explain the relationship between our emotional dependence on our physical health and the damage that is done when we feel betrayed by the body's constant failure. In a sense, it's like a small child whose parent has repeatedly promised to come watch their sports game only to miss every game of the season for 6 seasons straight. Eventually the child stops looking for the parent in the stands, and in some cases the child may even lose interest in playing at all. It becomes more a reminder of the disappointment than a fun diversion. </div>
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That's an imperfect example by far, but certain aspects in it ring true to our situation. The symbiotic relationship between your mind and body affects a lot of your outlook on life, and if you get to the point where you feel like your body is just waiting for you to make plans so it can fall apart on you, it will make things that much harder to push through. I can relate to this, because I have struggled with getting very discouraged when things seem to be improving, I make plans, and then I crash--hard. It feels like my body is actually punishing me for trying to be normal and productive. I hate it intensely. But I have found something that can help when I am starting to plummet into hopelessness about feeling like my body and the weather have conspired against me.</div>
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I have to remember the truth about this, which is:</div>
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<u style="font-weight: bold;">1. My body is frail and weak, because of the Fall.</u> When sin brought the curse on all humanity, my body was affected too. I try not to think about it a lot, because sometimes it can be frustrating, but in reality this is true for everyone. Everyone's body is falling apart to some degree or another because of the curse. No one's body is as God originally designed it. I am not the only one "falling apart."</div>
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<u style="font-weight: bold;">2. Even if my body is "conspiring against me" God is more powerful than my body's weakness.</u> This was an odd way to word it, I know, but I couldn't come up with a better way to say this. Even assuming that my worst conspiracy theories are true, and my body is getting together with the weather to plan out the worst possible day for me, nothing that happens in my physical health is outside of God's control. Even if all the forces of nature are aimed against me by the gates of hell (and I realize this is sounding very apocalyptic, but some days, that's how it feels) they are not outside of God's plan for my day. My body may conspire against me, but God is conspiring for me. That is a comforting thought in the middle of craziness.</div>
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<b style="text-decoration: underline;">3. Dependence on my body will always end in disappointment.</b> I don't know where in the Old Testament it is, but somewhere there is a verse that discusses some people trusting in the strength of mankind and some trust in the strength of horses, but I will trust in the LORD. I realize that is probably taken majorly out of context, so don't quote me, but my point is that while it feels good to depend on my body (most people don't even realize they are) my true dependence should be on God not on feeling healthy enough to go through my day the way I want to. When I'm stuck on feeling "betrayed" I have to remember that I was trusting the wrong thing in the first place.</div>
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<u style="font-weight: bold;">4. Be sensitive to those around you.</u> This is more of a side note for those who are living around people who are still processing the sense of hurt and betrayal that their bodies don't work the way they think they should. Sometimes people assume that chronic pain is only physical, but it goes so much deeper. Emotions, thoughts, and relationships are all heavily affected by these types of conditions, and a lot of times careless well-meant words can be misplaced and do more harm than good. All I am asking is that you be sensitive when the sick person in your life tries to share where they are at in their journey. It may be they have just begun to process this profound sense of intimate betrayal, and they don't have all the words for it yet. Or they may have been soldiering on through it stoically for years and finally need to acknowledge how much it hurts and how disappointing it has been. Whatever the case, remember to be kind, gentle and try to listen with a heart that wants to comfort.</div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7369112881675108174.post-29615560428673807952015-09-04T19:04:00.001-05:002015-09-04T21:40:50.560-05:00Weathering the Relapses<div dir="ltr" style="text-align: left;" trbidi="on">
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It's not a topic we like to talk about, but it's going to happen. Sooner or later we're going to have a relapse. Knowing this, it feels like something we should discuss.</div>
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So, you're going along, making progress, and you almost start to think that you're not really as sick as you thought you were. Maybe the doctor was wrong. Maybe things will get back to normal soon. Then it hits. You wake up one day and you can't get your legs out of bed. Your head is pounding. <i>Crud</i>, you've relapsed. You drag yourself around and start thinking angry thoughts about the doctor and the medications and feel frustrated that the hope you just felt is pulled out of reach again. </div>
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It's hard to finally feel a little bit of hope that things might eventually get better, and then almost feel punished by your body for feeling hopeful. You might go through this cycle a few times and start to wonder if you should just avoid feeling that hope to avoid the disappointment that follows it. But we can't just give up on hope. It's not wrong to let yourself hope that things are going to get better, but I understand that it's hard to go through these cycles. So we know we don't want to give up on hope, but we also know that relapses are going to happen. Here are a few thoughts on how to handle the relapses we know are going to come.</div>
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<li><b>Keep your head in the moment. </b>While it's easy to let hope get you daydreaming about the future, don't get bogged down in where you might be a few years from now. You are going to have ups and downs, but focusing on them from a long way off won't help you get through them. Focus on where you are right now, and let the future be what it's going to be.</li>
<li><b>Keep the goal in mind. </b>Though you don't want to let your heart sink in the bog of future possibilities, it is important to keep in mind the ultimate purpose in dealing with your daily pain and fatigue. You aren't here in life to just make the best of a bad deal. God's put you in the middle of these struggles to show His glory in your life and to make you more like Jesus. </li>
<li><b>Discuss it with someone. </b>When you're alone with this cycle of destructive and depressing thoughts, it's easy to start making bad decisions and doubt what you know is true. It's important to discuss it with someone you know will remind you of the truth rather than listening to the lies that your pain tells you. </li>
<li><b>Take it easy on yourself.</b> When you're in a relapse, it can make you feel like a failure. Try to take it easier when you're struggling physically. You're already in pain, it will only make it worse if you beat yourself up for all the things you can't get done because you're sick.</li>
<li><b>The relapse won't last forever. </b> Don't give up. The struggle with pain and fatigue might be a lifelong fight, but the intense struggle you're facing right now isn't the level it will stay at forever. You will level out again. There will be more ups with the downs.</li>
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These are only a few thoughts on how to deal with relapses as they come. There is no easy quick fix for the slumps. Sometimes the only thing you can do is hold on to what you know and wait out the storm. The storm may get rough through the night, but the morning will come. The morning will come.</div>
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Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7369112881675108174.post-82607524272591021752015-07-01T01:50:00.000-05:002015-07-01T01:50:39.418-05:00To the Caregivers in Our Lives<div dir="ltr" style="text-align: left;" trbidi="on">
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A lot of the posts on this blog center their attention on our pain, our medications, our hope, our faith, our fatigue, and our daily suffering. What we don't discuss very often are the people in our lives who help us keep going from day to day--our caregivers. So, this is a shoutout to the people whose lives have been forever changed by ours, whose strength holds us in our weakness, whose hope reminds us that each day has value, even when we spend them in bed, and whose persistent, compassionate love shows us God's love to us in tangible ways when the pills and pain get to be too much.</div>
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In honor of Canada Day, I would like to share some traits about my husband who is Canadian that have strengthened me in this journey. While marriage under normal circumstances can be stressful, adding a chronic condition to the mix, especially right in the beginning, will have challenges of its own. It's not been an easy start, but having him along makes the rough parts worth it. So, consider this a list of some of his character traits that I am grateful for.</div>
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<u style="font-weight: bold;">He is a constant source of strength to me when I am weak.</u> One aspect of chronic illness that I hate is constantly feeling my weakness and feeling the fatigue. It's easy to focus on the fact that I can no longer accomplish things I used to be able to "power through" or things I've always wanted to try are now out of the question, but it is a great comfort to know that even on the days when I have a hard time getting out of bed, Jon is ready to lend all of his strength (and he is a pretty tough Canadian guy, eh) to me at a moment's notice. If I can't cook dinner or help with laundry or sweep or whatever needs to be done, he is ready to fill in the gap where my ability is lacking. Also on an emotional level, when I am upset at my status, he is ready to sit with me and let me vent the emotions or cry until his shirt is drenched in my feelings. He is ready to be my strength, and there are lots of days where I need that.</div>
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<u style="font-weight: bold;">He is patient with my limitations.</u> As previously mentioned, there are distinct limitations on my physical energy and strength. This means that sometimes basic household stuff doesn't get done. Rather than coming home and looking around at what I haven't finished while he was at work, he is just so glad to see me. When I need space and time to collect my wits in the morning and prepare myself to face another day, he's willing to back away and give me that space. There are lots of ways that my condition has become his condition, and rather than venting the inevitable frustration he faces from that back onto me, he is patient and gentle and kind. </div>
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<u style="font-weight: bold;">He is constantly looking out for my best interests.</u> This might sound like an odd thought, but when we are out somewhere and friends ask if we want to go have dinner at a restaurant with them, he is always checking on how I'm doing before just automatically assuming we can go. If I am seeming tired, he wants to know how I'm doing and what he can do to help me. When it's time to pick what we're going to eat he wants to make sure that it will not upset my stomach. Whether it's being my advocate in conversations where I can't think quickly enough to interact because of fibrofog or simply just checking with me before agreeing to make plans that will affect us, he is constantly doing his best to consider my needs and see that they are met.</div>
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<u style="font-weight: bold;">He is learning my condition.</u> This one is incredibly special and important when dealing with a caregiver who is also a spouse. It is good to read and study on the abstract condition that you've been diagnosed with, but to actually study how it affects the person you're caring for emotionally, physically, spiritually, etc. is so much more meaningful. I can't put into adequate words how good it is to know that someone is not only watching out for you but is also actively working on learning how you function within the specific condition you have. Somedays Jon knows my tendencies and needs with fibro better than I do, and that's a good thing because I can't remember them anyway.</div>
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<u style="font-weight: bold;">He loves me--fibro and all.</u> It's hard to explain to a dating couple or engaged couple or even a healthy married couple, what love looks like for a young couple who are less than two years into marriage and dealing with life altering chronic conditions on a daily basis. It really does become a third entity in the relationship. Every situation must take it into account, and nearly every conversation and interaction is affected by it somehow. Choosing to marry Jon knowing some of the extent to which it would weigh on him was one of the hardest decisions I've ever had to make, and it was one I struggled with extensively. It didn't feel fair to put this on him, knowing that there was no way to adequately explain my condition to him until he was living with it everyday. However, even though it makes our life together much more complicated than a lot of other newly-weds I am so glad we went through with our decision. Fibro with Jon is so much better than fibro before Jon. I thought I had a rough idea of what love might look like before this, but seeing Jon deal with my condition on a daily basis as if it truly was afflicting his own body--I now feel confident I have a more intimate understanding of what it means to love your spouse. </div>
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<b>To those fighting these conditions with no one by your side --</b> I am sorry. I am so so sorry. I know that so much of the struggle of our conditions is the isolation they bring on us, and it is so much more heavy when there is no one with us at home to carry the load. I have had some days of my own in this camp, before Jon, and the struggle runs deep. It can drive us into the ground if we let it. I think I would say to you who are still in that place, don't let yourself be alone. I know you can't really choose to just go out and get married or call back your family if they've written you off from misunderstandings of your condition, but there are online communities out there designed to bring support and empathy. Reach out for help. Don't let yourself go through this struggle alone. If you need someone to listen to your battle, I want to be here for you. You can reach me through the comments or the facebook, twitter, or google+ pages. Bottom line: we are meant to face these trials together. This can be the loneliest existence in the world if we let it, so let's choose not to. Let's take that power back and reach out. </div>
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Happy Canada Day to everyone far and near. Happy Canada Day particulary to my favorite Canadian :) and to our family who will be celebrating it miles away. We miss you and will think of you as we celebrate it this year. Thank you for raising a son who is a strong, gentle caregiver. He is loved and appreciated. And to someone I don't say it often enough--Thank you for being my husband, my best friend, and my caregiver.</div>
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g&p </div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7369112881675108174.post-54045723508802877192015-06-26T23:53:00.000-05:002015-06-26T23:53:15.624-05:00Afraid to Hope (Trial and Error in Treatment Plans)<div dir="ltr" style="text-align: left;" trbidi="on">
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Have you ever felt afraid to hope for something? Something you wanted so desperately that you were afraid to actually start anticipating it in case it didn't? Remember when you were first diagnosed and everything seemed fresh and new? All kinds of new ideas poured in from all sides and you were ready to try just about anything now that you had a word for your symptoms and you weren't alone or crazy. It was a great day! But after three different diets, endless different types of medications, hot packs, ice packs, different sleep routines, sleep aids, changing around of schedules, trying different specialists, and even several ventures into the homeopathic realm, you just weren't as chipper every time someone came up with a "new miracle cure" for your chronic condition... To be honest, you weren't even up to discussing new ideas for it some days. If you've ever hit this rut a few months or even a year or so after your diagnosis (or even multiple times since your original diagnosis as different treatments work for a while and then get less effective) then you will understand why tonight I am edgy.</div>
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Tomorrow a new medical device arrives in the mail that I am eager to try on the one hand, and terrified to put any hope in on the other. I have been in some really difficult pain the past few weeks, and this new shot in the dark could just be that, another futile attempt at finding a lasting solution. But it could also provide so much pain relief without nearly so many over-the-counter pain killers. So, I am hopeful, but I am also afraid. I am afraid to have this hope. Afraid I will be let down and in being let down, that I will feel guilty for even hoping to begin with. That can be a hazard when dealing with a chronic condition such as fibro or RA or lupus. It's easy to feel as though your body has betrayed you when something doesn't work. It's easy to get discouraged when a treatment doesn't help you as much as it helped the 10 other people who suggested it. It's hard to walk that fine line between perpetual skepticism and gullibility without living on a roller coaster of emotional ups and downs. Working through all of this with my husband has given me a few thoughts to share on trying to work through these types of emotions and decisions without becoming a victim of your body.</div>
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<b><u>1. Don't attempt any new trial-and-error treatments unless you are emotionally prepared to deal with whatever the outcome will be (effective or complete failure).</u></b> This might sound odd, but it can actually be better to just stay with what you can predict than to risk making things worse if you are not ready to deal with that possibility. Take an account of yourself before proceeding with anything new.</div>
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<b><u>2. Always consult with your spouse or anybody you live with (or any caretakers) before changing your treatment plan. </u></b> It can be easy with a chronic condition to fall into tunnel vision and think that your condition only affects you, but it's important to realize that your health actually affects a great deal of other people, most directly your immediate family and those you live with as well as those who may not live with you but take care of you on a daily basis. Before making any drastic changes or decisions about your treatment regimen, it is a good idea to check with those who live with you. Not only should they get input on the decision, but they may be able to give you feedback on aspects of your condition that you aren't aware of.</div>
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<u><b>3. Don't try more than one or two new things at the same time. </b></u> There are a lot of options out there when it comes to trying new treatments. It is usually best to only change one or two things at a time in order to be able to tell if any improvement or digression is from what you changed. If you completely change everything overnight, it can be very hard to tell what's helping and what's not made a difference at all. Change things slowly.</div>
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<b><u>4. Don't be afraid to hope for improvement.</u></b> This one strikes a chord with me personally the most. I have found that being several years into my diagnosis now, I am very often hesitant to try anything new that I read about online or hear about through other people. One reason is that fear I mentioned earlier, but I also find that sometimes I just feel bombarded with solutions and suggestions from people who don't have my condition who want to be helpful. While I appreciate their sentiments, it sometimes has the effect of making me feel that they see my condition as being my own fault.</div>
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The nature of fibro is to get better for a short time and then unexpectedly get flareups from time to time. Over time the condition typically progresses to more and more severe symptoms. With this knowledge, I often struggle with losing hope that things will ever be better. It's easy to feel they will just get worse, but I have to fight the idea that it's ok to just give in to those feelings. Occasionally, it's a good idea to take a chance and try something new. So, this is me, trying something new. Tomorrow, it should arrive in the mail. I've ordered a Quell unit from <a href="http://www.quellrelief.com/" target="_blank">www.quellrelief.com</a>, and I'm hopeful that it will be effective in improving my quality of life without more drugs. Whatever new treatment options you are given the chance to try, don't be afraid to hope for some improvement as technology and medical sciences advance. But, beyond that, remember that our ultimate hope is not in medicine or even in pain relief. Our ultimate hope lies in Jesus, and no amount of pain can take that away. Because of Him, I can walk through that fear and hope anyway. If it works, that would be great. If it doesn't, I'll still be ok. </div>
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grace and peace to everyone out there in pain <3</div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7369112881675108174.post-10650979511037666082015-06-11T15:14:00.000-05:002015-06-11T15:14:15.300-05:00To Medicate or Not to Medicate<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: inherit;">Finally we reach the topic that seems to bring out the worst from all sides--medication. It seems that some of the most genteel and compassionate people can sometimes unleash their claws when doctors and medications are mentioned whether in favour of them or in harsh anger against them. It seems to be a trend these days to forsake medical professionals in the name of "all things natural" and "natural is always better" ideology. While I have an appreciation for some natural remedies and don't want to be disrespectful to those who practice them on a regular basis, I do feel the need to explain more extensively why my husband and I have made the decision to pursue a more traditional medical doctor in treating my fibromyalgia and why I do not hold that "natural" is necessarily better. Please do not consider this a rant against natural or home remedies, merely an apologetic to open up more honest discussion for both sides.</span></div>
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<b><span style="font-family: inherit; font-size: x-large;"> <u>Backstory</u></span></b></div>
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<span style="font-family: inherit;">As a young teenager I had very little confidence in medical doctors. I don't mean to imply that I didn't think they could be good at their job, but I didn't have a very consistent relationship with my personal doctor and tried my best to avoid doctor visits whenever possible. </span><span style="font-family: inherit;">Doctors weren't someone you saw often enough to confide in or show weakness to or even complain to. Doctors were the ones you went to in order to get physical forms signed off or in the rare case of being so sick your school might tell you to stay home until you got a doctor to (again) sign off. Most diseases were to be suffered through until you felt better, not worth spending money on a doctor visit. If something unexpected happened in your health, the first response was to call around to people you knew who had various levels of experience with the healthcare profession who wouldn't charge. A doctor was always a last resort. So, I understand people coming to the table with little or no trust and confidence built up in their doctor/patient relationship.</span></div>
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<span style="font-family: inherit;">I also had limited experience with chiropractors. I'd only been to one extensively, and I had very limited symptoms before starting those "adjustments." This doctor/patient began and soon had me sitting through seminars designed to destroy whatever small trust I'd still held for traditional doctors and medical professionals. I was given X rays at the chiropractor's office and told that my problems were severe, even though they didn't feel so at the time. After the first several adjustments the pain did become severe, but I was told I was getting better, so I kept going. This continued for several years. To this day that pain is still present. I no longer frequent a chiropractor, but I have been there as well.</span></div>
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<a href="http://2.bp.blogspot.com/-G3C4dF99oLw/VXjkRPCaH4I/AAAAAAAAHh4/SwdOvo53-0w/s1600/IMG_20150610_201647-001.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: inherit;"><img border="0" height="300" src="http://2.bp.blogspot.com/-G3C4dF99oLw/VXjkRPCaH4I/AAAAAAAAHh4/SwdOvo53-0w/s400/IMG_20150610_201647-001.jpg" width="400" /></span></a><span style="font-family: inherit;">As a young adult, I decided to give doctors another chance and struck out to find my own primary care physician. It was a difficult decision and left me afraid and anxious wondering if anyone would listen to me, and if there was anyone I could trust with the unexplained pain and fatigue and headaches. I had yet another migraine headache and decided to start a relationship with a new doctor. What I found in the world of "being an adult and choosing your own doctor" was an amazing world of finding someone you could trust. I found a caring, compassionate, professional woman who could handle the most awkward, embarrassing, scary, confidential information I could give her. </span></div>
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<span style="font-family: inherit;">So, when test after test came back negative and the only diagnosis I came back with from the referred Rheumatologist was Fibromyalgia, I started getting advice and prescriptions from my newfound confidante and doctor on dealing with this condition. She became an expert I could bounce ideas and my own research off of. She became a trusted "friend" I could confide my bad flare-ups in, and when the pain got really bad she was the one I could go to and ask for some temporary help to get me through the worst points of it. When my brain struggled with obsessive thinking patterns, she's the one who helped me navigate a medication that gave me back control over that thinking, and when I just needed to tell someone my struggle with this disease. She was there to listen.</span></div>
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<span style="font-family: inherit; font-size: x-large;"><u><b>Current Perspective</b></u></span></div>
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<span style="font-family: inherit;">That was the beginning. I've now been with her for several years, worked through trial and error on several different treatment plans that include medication, vitamins, exercise, sleep patterns, and more. She's been a steady source of support and advice for me on the journey of walking through the pain and flare-ups. I understand that hasn't been everyone's experience with doctors. I also know that not all doctors are good listeners or humble enough to be upfront when they don't really know an answer. Finding a good doctor is not an easy task, and I won't oversimplify the up's and down's that go along with this process. Navigating the medical insurance isn't any easier, particularly with Obamacare and rising healthcare costs. It can be expensive and emotionally taxing to say the least. Medications can be costly, depending on your insurance. These are not easy issues to make wise decisions on. </span><span style="font-family: inherit;">However...</span></div>
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<i><span style="font-family: inherit;">Here's where it gets a little less anecdotal and a little more controversial--</span></i></div>
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<span style="font-family: inherit; font-size: x-large;"><u><b>Moral Implications</b></u></span></div>
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<span style="font-family: inherit;">I understand that there are many varying reasons that some people decide not to use traditional medicine for their conditions or genuinely can't find the answers they need from it. It is often not an easy decision to make the step away from traditional Western medicine. What I find disheartening is when some of these same people decide that their personal medical decisions (whether using essential oils, a chiropractor, homeopathic remedies, or traditional Chinese medicine, etc.) are morally superior or intellectually above the common person choosing to use a traditional doctor. </span></div>
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<span style="font-family: inherit;">People's experiences in this area will be vastly different depending on your personal health, your body's chemistry, your background experiences, your family history, the area of the country you live in, and even your personality. It is unrealistic to expect every other person to be held to your method of dealing with disease and health, and unkind to judge other people's health choices by your own decisions. If you find a certain diet, in conjunction with supplements, helps your pain, go for it. If you opt for acupuncture and yoga, and it helps--awesome. If essential oils and a combination of vitamins make your flareups better, go in peace and keep it up. If you find that your treatment plan includes some strong prescriptions and traditional medical doctors, blessings. This is not one size fits all. It doesn't have to be.</span></div>
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<span style="font-family: inherit;">It is not morally superior to choose one diet over another. It is not a mark of your extreme intelligence or your family's great achievement that you follow one specific health regimen over another or refuse to use over-the-counter pain relievers. It doesn't make you wrong to choose alternative treatments, either. The Bible does not give us specifics when it comes to our physical health. As such, we rely on principles and wisdom to make the best decisions we can with the information we have and the resources available to us. It is unkind and unhelpful to treat others poorly or snub them because they have made the best decision they can for their situation and it does not match the decision you would have made in a similar situation. This is a wisdom issue, not one of morality.</span></div>
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<span style="font-family: inherit; font-size: x-large;"><u><b>Concluding Thoughts</b></u></span></div>
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<span style="font-family: inherit;">So, how can we apply these thoughts to our everyday conversations and interactions with others as we all try to stay as healthy as possible and just show Christ in our basic pursuit of being well? Here are some practical thoughts I came up with.</span></div>
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<span style="font-family: inherit;"><b><u>1. Show grace when others' medical decisions make no sense to you. </u></b> Allow others the courtesy to make their own decisions and love them the same. Don't make them feel the need to defend or justify their decisions to you. It's likely they put a great deal of thought into it. Give them that benefit of the doubt. Going on serious medication is a big decision, and a lot of people have serious fear and doubt about making that decision because of the backlash they face when others find out.</span></div>
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<span style="font-family: inherit;"><u><b>2. Be kind when engaging in public conversation about debated medical practices. </b></u> Some people are very concerned about the dangers of vaccines; others are scared of the results of not getting them. Realize that both sides have reasoning for their positions and deserve respect. There are people involved, not just ideas.</span></div>
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<span style="font-family: inherit;"><u><b>3. Promote without bragging.</b></u> It's not wrong to encourage others to consider the health choices you've made. Just try to do it without making others feel like trash for not necessarily agreeing with you.</span></div>
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<span style="font-family: inherit;"><u><b>4. Practice Healthcare Universalism. </b></u> This will probably be most difficult for those of us who cling to absolute Truth, because just the term "Universalism" seems to bring out a perpetual twitch. By this I simply mean, in the world of health, what works for me may not work for you. Keep in mind, there is A LOT we still don't know about how the body and mind work. <span style="text-align: left;">The test is not whether it matches my definition of good healthcare, but whether or not it is working to improve your quality of life. This is healthcare, not religion.</span></span></div>
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<span style="font-family: inherit;"><u><b>5. Be open to listening to others, without feeling the need to correct their choices and opinions. </b></u> Don't shutdown discussions with others whose experiences don't match yours. If you find yourself in a conversation with someone who had a good experience where you had a bad one, consider it an opportunity to learn and grow, not something that needs to be corrected and stopped. Their experience doesn't invalidate yours and vice versa. </span><br />
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<span style="font-family: inherit;"><u><b>6. Recognize and acknowledge the unknowns. </b></u> Fibromyalgia is still not narrowed down to one specific root cause, and no known cure exists. More so than even typical health issues, Fibro often comes down to individualized treatment plans that address the issues most significant to the patient. Don't berate someone for doing their best to deal with their situation. After numerous attempts at trial and error, it gets really discouraging to finally have some progress with your treatment only to have someone come along and lecture you for not pursuing the "right" treatment.</span></div>
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Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7369112881675108174.post-89457901646744618332015-06-05T20:12:00.001-05:002015-06-05T20:17:46.412-05:00Stretching the Limits and Facing Your Fears<div dir="ltr" style="text-align: left;" trbidi="on">
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<span style="font-family: inherit;">I had the opportunity to travel across the country this past week for a special graduation celebration. <b><i>*Shoutout to Rachel! Congratulations!* </i></b>As a part of the trip, which even most "normally healthy" people would find exhausting, there were some fun extras that got thrown in. Some were physically taxing and others were less so. One such endeavour was hiking through a canyon in Idaho. As a Midwesterner, I can attest that our version of "hiking" is very different and involves some moderate hills with a few lakes if you're lucky and in the right part of the state. We do not have cliffs, canyons, massive rocks, and certainly not most of the nature you'll see in the posted pictures. When the hiking trip was originally brought up, I'll admit I was a bit intimidated at the prospect of a "real western hike." <i><b>What if I was too weak? What if I slowed everyone else down or couldn't finish? What if it made me too sick to do anything else the rest of the trip? </b></i></span></div>
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<span style="font-family: inherit;">Ultimately, against the advice of even my closest friend around I decided to try. I wasn't going to miss this chance to spend the day with the group or the chance to have hiked a real, proper canyon. I tried to mentally prepare myself for the challenge and got as many details as possible from people who'd gone on this hike before so I knew what to expect and where the worst challenges might be. It was somewhat helpful, though it did make me wonder if I had made the right decision or not. Even on the drive out to the canyon I was still wondering if I should have just stayed at the hotel and rested for a few more hours...</span></div>
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<span style="font-family: inherit;">The hike itself was physically draining, and there were points where I could feel my spoons fleeing me by the handfuls instead of being carefully portioned out. My knees were woefully unprepared for the steep climb down and up, and breathing became a little difficult at points when the rain came and we were trying to hurry back the way we'd come to avoid the mud for the worst parts. </span></div>
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<span style="font-family: inherit;">When we finally came back to the top of the canyon and looked down the steep face of rocks where I'd just been struggling to get back out, I was awestruck. I could barely believe that I had really conquered this personal equivalent of a marathon and lived to tell about it. I was so relieved and happy from the experience and the fun company and the great pictures, that I was ready to tell the world <b><u>I HIKED THROUGH A REAL CANYON!</u></b> Then I stopped. Wave after wave of exhaustion hit me, and I had to sit on a rock until I could breathe deeply enough and my knees would stop shaking enough that I could walk back to the cars. <i>Should I really tell people? Would anyone even believe me? Worse, would they think my fibro was all a big joke?</i> Surely if I could hike through a legitimate canyon I could work in a normal job like everyone else and maintain a normal lifestyle. Sick people were supposed to always be sick. Sick people weren't supposed to test those limits or they risked losing what little understanding may have been extended to them. Was it really worth it?</span></div>
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<span style="font-family: inherit;">This probably seems like an odd response to having just hiked through such beautiful surroundings for the first time, but to anyone who has ever struggled with an invisible illness that makes everyday life a struggle and has to take great care in each choice to expend their energy, it makes a lot of sense. Hiking that canyon was a big deal for me. It was something that I honestly didn't know I could do, and common sense said I couldn't. It was a challenge that took me to the end of my strength and energy and pain tolerance, but it also showed me such natural beauty and outdoor solitude and opportunity for deep and meaningful conversation with good company. For me, it meant a lot to finish, even if it took what energy I had left. </span></div>
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<span style="font-family: inherit;">After living with fibro for a while now, it's easy to forget or ignore the limits and pay for it later. It's also easy to flip to the other side of the spectrum and become afraid of planning to have energy and then running out of it too early. The problem is, if you only ever plan to have the minimum amount of energy, you won't be able to do anything. The hard part is learning to aim for the middle--to know when to aim high and when to aim lower, and how to somehow land between the two often enough that you don't sabotage your own health or become a recluse. </span></div>
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As a chronically ill Christian, it's easy to only push yourself for "ministry-related" activities and to limit yourself when it comes to your personal life, but while your body needs rest, it also needs to be reminded occasionally that you are still alive, and God hasn't made you sick to punish you. </div>
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So, when you can go out and do things (like climb a mountain or watch a movie) do it. Push yourself occasionally and see what happens. You won't regret those memories or conversations. But, don't let other people make you feel guilty for the times when you just can't do it. You will have days when your body can't handle getting off the couch, and then there are days when you can literally hike through canyons. When you can hike--hike. When you can't get off the couch--don't. Don't be afraid to know your limits, and don't be afraid to occasionally push them. (Remember, guys, I said OCCASIONALLY...)</div>
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<3 g&p<br />
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ktg</div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7369112881675108174.post-41019541868793874742015-05-12T14:33:00.001-05:002015-05-12T14:59:47.698-05:00Fibromyalgia Awareness Day 2015<div dir="ltr" style="text-align: left;" trbidi="on">
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Today, May 12th, marks Fibromyalgia Awareness Day. It's now been three years since I was officially diagnosed with this condition. While I could spend a lengthy post describing exactly what it is and what doctors think about it, I don't think it's the most effective way to raise awareness. Frankly, nobody knows for sure: </div>
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<li>What causes it (though everybody has their own opinions) </li>
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<li>A single treatment that works well for everybody</li>
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So, instead, let me just take this opportunity to briefly put you, the reader, into the mindset of a "typical" Fibromyalgia patient after diagnosis...</div>
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You probably used to be a very driven person (most fibro patients were and still try to be) before getting sick. You may have worked a full-time job, taken care of your family, taken online classes, and been heavily involved in your church or a community outreach program. Your mind still jumps back to those days of sprinting from beginning to end sometimes, forgetting the new normal. You might still try to get it all done, only to get halfway through the first task on your list and collapse exhausted onto the couch.</div>
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Your mind will probably start getting confused at times, leaving you wondering why you're at the store or what you were just discussing. You might forget really important details or basic information like your husband's phone number. It will be frustrating as you have the same mental fog and confusion as your 80 year-old grandmother, only you're in your early 30's usually. But the worst part of this confusion will be when you seem completely aware of your surroundings, but you are unable to communicate clearly, leaving you feeling isolated, frustrated, and afraid.</div>
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Your body will slow down, even though your mind probably won't realize how much. You won't understand why it suddenly takes you 30 minutes to just put clothes on or why you are tired no matter how long you sleep at night. It won't make sense that you look so young and feel so old.</div>
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You will probably start to face some level of mental anxiety and possibly some depression. Facing each morning with having to fight to make yourself get out of bed, and knowing it is likely just going to get worse as you get older, feeling completely out of control of your body and betrayed by your body that should be healthy but feels so sick--these are reasons that after extended periods of time can make people feel anxious about everything, and when this culminates in realized powerlessness to "fix it" it can lead to fighting with depression.</div>
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Aside from the fatigue, headaches, chronic pain, anxiety, depression, and mental fog, you probably won't hear much about the emotional side effects that are also likely to crop up eventually. But if you follow through with this train of thought, it's not that far of a stretch.</div>
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If you take a very driven person (who may also attach some or all of their significance to their work or their relationships) and gradually, inexplicably drain away the strength and energy they need to do the work or maintain those relationships, it is likely to have an emotional effect on that person. Not only is that strength gone, but it is often gone without a socially acceptable explanation. If this same person had been diagnosed with cancer, some of the effect would be the same, but the people around them are more likely to have context for the situation. </div>
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This process often leads to a grieving process. You will grieve for the pieces of your life that disappeared while you were in a fog trying to find your keys that fourth time the same morning. You will grieve for the life you expected but were not designed for. That's part of learning to accept what God has given you. It's ok to grieve. You will grieve that people don't understand you and sometimes just think you're lazy or too sensitive. You will grieve lost relationships when you don't have the energy to maintain them or others pull away because you are too complicated. </div>
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So, what is it like to have Fibromyalgia? You have the fatigue, the chronic pain, the headaches, the anxiety, even depression, and yes, grief. You will have lost friendships, and you will find things that have be let go in order to hold on to what really matters. But I don't write this to ask for sympathy or bemoan how hard life is for someone with Fibromyalgia, because as a follower of Christ this is just a part of a bigger reality. To me, this is just one more big, recurring reminder that I, like everyone else, live under a very real curse of sin that has been corroding the fabric of creation from the Fall.</div>
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So, if not sympathy, then what? Why bother with raising awareness at all? As with everyone in the Body of Christ, those believers with fibro need empathy and compassion and true fellowship in the Gospel. We are never going to be what we were before this unknown beast (yes, that's what I call it) started attacking our bodies, minds, spirits, and very souls, but we are fighting our fight everyday on fronts we try not to advertise to everyone around us. We don't want to be written off as lazy or pathetic or attention-seeking drama queens. We are asking, no, begging, for the Body of Christ to function as it was intended--as a family, to lovingly surround us and embrace us with warm, loving arms in grace and mercy. To weep with us when we weep and laugh with us when we laugh, because I guarantee we do both frequently behind closed doors. Let's break down the barriers, and start reaching out in love and understanding to the weakest among us, instead of waiting for them to be strong enough to earn their spot back among the toughest.</div>
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grace & peace,</div>
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ktg</div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7369112881675108174.post-31736315068542449802015-04-20T19:57:00.003-05:002015-04-20T20:01:19.003-05:00Redefining Friendships (Letting the Gospel Impact our Relationships)<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-size: large;">One thing that chronic illness has done for me is redefine the image of friendship in my life. Before my diagnosis a lot of my friendships were based on connections of strength. I found other people who shared my mutual passions or interests or skills and we discussed them from positions of strength. We both came to the table with something to offer, and we had mutually beneficial relationships. </span><br />
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<span style="font-size: large;">Some of these friendships came in the form of friends in certain classes at school; others were at church where I was able to volunteer and get involved in a variety of different programs with others equally dedicated to the cause. In looking back on it now, I can say that most of my relationships were relying to some degree on my ability to "hold up my end of the deal" so to speak. Whether my end was to continue being involved in a certain program at church or affirming some belief that my friend held dear or even dressing a certain way that my friend approved of. </span><br />
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<span style="font-size: large;">Acceptance was definitely dependent on certain factors which varied according to which friend was in question at the time. Needless to say, in this type of atmosphere of friendship, my deep friendships were a lot of mental work to maintain. Not only did I have to keep straight the criteria for keeping each friend happy individually, but I also had to work hard at times to avoid letting one friend's criteria break offend a different friend. Those years were exhausting.</span><br />
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<span style="font-size: large;">Then came the years where no matter how hard I tried I just could not keep up with the demands (whether external and real or internal and imagined). I worked harder but fell farther and farther behind. I was swamped with life itself, and completely drained. My mind was completely drenched in stress on a daily basis, and I felt so intensely alone. I gradually wandered into some new friendships while keeping some of the rare ones that didn't involve a lot of mental gymnastics, but the damage had been done.</span><br />
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<span style="font-size: large;">Then came my diagnosis. <b>Fibromyalgia.</b> Those years of being inexplicably tired no matter how long I slept. Those years of being in pain no matter if I was exercising regularly or not. Those headaches that would not go away no matter what OTC pill or hot pack compress I tried. Yeah, it was all real. It wasn't going away. That anxiety that would creep in from nowhere and stay as long as it wanted. Those long periods of darkness that sometimes lasted for months without hope of relief. They were probably going to be a fight for the rest of my life. So why am I telling you all of this in a post about friendship?</span><br />
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<span style="font-size: large;">In a lot of ways Fibromyalgia has complicated life for me, but in regards to friendships it has simplified things greatly. I can no longer limit myself to friendships where I feel that I can enter from a position of strength, because to put it bluntly, I am weak. Physically, emotionally, often spiritually and mentally. I can't be the person whose entire friendship hinges on meeting someone else's expectations or fulfilling a need in their life, because I am often struggling to keep up with things inside the four walls that constitute my own home. </span><br />
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<span style="font-size: large;">I can't go through life viewing myself as a strong person and trying to surround myself by other strong people, because I have seen the truth. <b>We are weak people, and we need a strong Savior.</b> No one is going to be able to fulfill my expectations except Jesus (and that's only when my expectations are right, which is not always). No one is going to be available all the time to drop everything and come to the rescue. No one is going to always have a good attitude and tell me exactly what I need to hear or quote exactly the right verse to prop me back up on my feet. No one is going to be all of what I need in a friend except Jesus, so what audacity do I have thinking that I can play substitute for Him?</span><br />
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<span style="font-size: large;">This realization has freed me in a lot of ways. It has been hard to see some friendships slip away from the past (but who hasn't had that happen?). It's not always intentional on anyone's part, but sometimes people get to different places in their lives and no longer have the connection they used to. <b>I am genuinely grateful to God for every true, deep friend He has ever brought into my life for however short a time because I know that was His mercy and grace at work.</b> But honestly it's hard to stay connected with people from the past when your connection was based on what you could do and now you're....just....sick. </span><br />
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<span style="font-size: large;">Some of my closest, deepest relationships that have Gospel written all over them are people that I have known for years, who I used to think were invincible, and in recent years we have been able to connect in weakness as well as strength. We are no longer trying to convince each other that we have no needs, but we are humbly sharing them with each other and encouraging each other to look to Jesus who is our mutual friend. </span><br />
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<span style="font-size: large;">I am also making new, deep connections with people all over the country and world who are willing to be open with their weakness and share it as a way of connecting in the Gospel. <u>It is refreshing and encouraging to share your struggles and weakness with someone who is honest enough and brave enough to share their own in return. </u> No one wants to be an emotional charity case, and the Gospel pictures the Body of Christ as a family that cries with those who cry and laughs with those who laugh. We are to be sharing in each other's grief and bearing each other's burdens. How can we do that if nobody knows what they are? </span><br />
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<span style="font-size: large;">I have written many times about being willing to reach out to those who are struggling with weakness, but it occurs to me that <i>sometimes the most effective way to reach out to a weak person is to share some of your own weakness, and in the process to connect on the deepest level possible -- your mutual strength and hope -- Jesus Christ.</i> He is our comfort. He is our strength. He is the reason that the darkness does eventually lift, and the days are worth it inspite of the pain. He is the reason we carry on. </span><br />
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<span style="font-size: large;">g&p</span></div>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-7369112881675108174.post-49513427802154593632015-04-08T22:22:00.002-05:002015-05-20T21:46:25.102-05:00"How are you doing?" (Serving through Listening)<div dir="ltr" style="text-align: left;" trbidi="on">
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</span> <span style="font-family: inherit; font-size: large;">Have you ever been in the middle of a conversation and realized that the person was simply waiting for you to finish talking so he could pick up where he left off? I have--many times. It doesn't usually lead to a productive, thought-provoking conversation.</span><br />
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<span style="font-family: inherit; font-size: large;">Have you ever greeted someone with a casual, "Hey, how are you?" only to keep walking without even giving them a chance to answer you? Did you really want an answer?</span></div>
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<span style="font-family: inherit; font-size: large;">Sometimes the most loaded question you can get as someone who is chronically ill is "How are you?" A lot depends on who is asking and what type of answer they're looking for. <i>Do they really want to know? Do they only ask to be polite? If they do seem genuine, how much can they handle? How much do they already know, and how much context will be necessary?</i> It really can be exhausting trying to navigate these seemingly ordinary conversations.</span></div>
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<span style="font-family: inherit; font-size: large;">Now try framing that conversation by squeezing all that analysis into the 5-10 minutes before church services start and multiply it by 10-15 people milling around trying to be "friendly" and "fellowship." Odds are good this is the scenario facing most chronically ill people at their local churches if and when they are healthy enough or stubborn enough to drag themselves out of bed to go to a service. </span></div>
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<span style="font-family: inherit; font-size: large;">Needless to say, this situation does not bring out very many solid conversations. The socialite walks away feeling spiritual and satisfied, and the sick believer is left feeling disconnected, marginalized, and more isolated than before. </span><span style="font-family: inherit; font-size: large;">Ironically, much of the time this ritual is being practiced in the name of "good Christian fellowship." </span></div>
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<span style="font-family: inherit; font-size: large;">Our churches are full of people who want to socialize, but can't stop to actually listen. I'll be honest, there have been times when my least favourite question was "how are you?" because I had no idea how to answer that. As a Christian you feel like you shouldn't lie, but you also don't necessarily feel comfortable or even expected to tell the truth. And let's face it, who wants to be the person who always has an answer in the ballpark of "Well, I felt like crap for another week, but I'm still alive"? What do you do when the cultural expectation in church (answer to those types of questions must be positive or risk making the other person uncomfortable) conflicts with the basic Biblical expectation (don't lie)?</span></div>
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<span style="font-size: large;">You might consider this a common problem, and you might even feel equally annoyed when someone asks you a question, but doesn't really want an answer. But how can we make this better? We are all busy here, and we need to get back to our schedules. If we actually stop to listen to the people we're "talking" to won't we be cutting down on our progress in ministry? </span></div>
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<span style="font-size: large;">I do have an answer to that. The work of the ministry is people. Broken, hurting people. If you don't have time to listen to them and love them patiently--then you don't have time for ministry. Whatever else you're doing in the name of "ministry" that's not it. You may actually be doing damage in the name of Jesus. </span></div>
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<span style="font-size: large;">There is quite the push in church to have program-oriented agendas. We will bake cookies, hand out flyers, invite people to church, witness to people, teach the children, etc. But we are not scheduling time out to just sit and listen to the people we're supposedly trying to help. Maybe instead of more programs and willing volunteers, what the church needs is active, compassionate listeners.</span></div>
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<span style="font-size: large;">In the context of chronic illness, this can be a long, hard journey. There are lots of ups and downs in this walk, it is often not a fun experience. There will be medication transitions and hopes raised and dashed. There will be side effects, new symptoms, unexpected flare-ups, cancelled plans, and all kinds of trials unique to their own struggle. </span></div>
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<span style="font-size: large;">Being there for all of it is exhuasting, but it is what the church is called to do. As sisters and brothers in Christ, we need to show each other the love and concern of Christ, and if we are going to follow his example, we must do what he did. Listen with compassion. Sit and grieve with those who are grieving the active life they will never have again. Sit and cry with those whose pain you may not understand. Listen to people without trying to "fix" them. Learn from their pain instead of avoiding it. The ministry of listening is crucial to someone in constant pain. The world around them often isn't listening. Many times other Christians make them feel worthless because they are physically incapable of typical church activities. We don't have to get a Master's degree in Psychiatry to be able to help the hurting around us.</span></div>
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<span style="font-size: large;">Maybe rather than rushing off to your 46th commitment for church, you could just take some time out of the rest of your life to sit with someone and listen. Rather than trying to suggest a quick fix, learn about their condition from them. Instead of judging her and assuming she brought it on herself, maybe you could ask questions to make her feel comfortable opening up to you. </span></div>
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<span style="font-size: large;">Be the person in someone's life who says "How are you?" and stays to hear the answer--no matter how ugly the answer is going to be. Be the person who goes out of their way to make people comfortable enough to talk on a deep level. There's a lot of talk about being the hands and feet of Jesus these days. Maybe it's time he had a few more ears.</span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7369112881675108174.post-69577190539376145982014-11-30T20:34:00.003-06:002014-11-30T20:36:06.813-06:00Working Through Transitions<div dir="ltr" style="text-align: left;" trbidi="on">
Transitions can be hard. Even good change can be complicated. Traveling, seeing something finish, starting something new, taking time off--whatever the specifics of the situation, transitioning from one phase of life to another can be tricky, and this escalates to a whole new level when you add chronic illness into the picture.<br />
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Before anyone goes running off spreading the rumor that I'm pregnant or something similar, I'm not. Sorry to disappoint. :P Moving on...<br />
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I think what I find hardest about transitions is the opening it can give to doubt, insecurity, and fear. While things are known, there is a certain amount of security and routine. No matter how hard or how bad the routine can be--it is still routine. Dealing with new situations involves a certain amount of necessary unknowns. <br />
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Such a transition is the new reality in our household. Effective December 1st, Jon will be working as the manager of our local Habitat for Humanity Restore, and I will be working from home part-time as an online freelancer doing odd jobs involving typing, proofreading, formatting, writing, researching, and any other odd contracts that come my way. This transition should allow me to take more time to rest and try to not get as worn down as well as have more time to devote to school.<br />
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Upon sharing this news with many people I've had a broad spectum of responses--ranging from gleeful well-wishes to skeptical raised eyebrows. While i wish I could say that I knew exactly how things were going to go and that everything was settled, that is simply not the case. As you might imagine, there are a lot of unknown factors at play here. <br />
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Both of our jobs changing at the same time, our household income decreasing by a significant chunk, and our entire home dynamic shifting is cause for a little transition anxiety along with some insecurities surfacing. The good news is that we know our God provides for His children, and there is no doubt that He has provided these job changes and will continue to provide for us along the way. <br />
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In a lot of ways these jobs have been perfectly chosen for us, particularly with regard to our long-term hope of moving to the Middle East down the road. Jon's new job with Habitat may very well connect him with employment opportunities overseas once he is established in the organization. They have building projects in many countries around the world, and part of his motivation in changing jobs is the future possibility of using this as a network to gain access to places we would otherwise have a very difficult time getting to and staying in. Also, with my job being primarily internet-based, I will be able to theoretically work from just about anywhere that has internet access. <br />
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So, as risky as all these changes may seem on the surface, God is already providing the details and leading us in a very gentle step-by-step way. It's not easy to leave these kinds of details in His hand, especially when fibro threatens to make it next to impossible to turn off my mind, but it is encouraging to see the work He has already done in us and to look forward to what He is going to do with us in the future. We appreciate your prayers and will keep you updated as we see further progress.<br />
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g&p</div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7369112881675108174.post-76363669902762047452014-10-05T00:41:00.001-05:002014-10-05T00:41:28.356-05:00Home is Worth it<p dir="ltr">Have you ever had a day where you felt like survival mode had to kick in to get you to the end of it in one piece? What about a week like that? How about an entire month or year of your life? I have. I think many people with chronic illnesses could attest to that being the case on a fairly regular basis. Whether we want to admit it or not, we are often sucked into the belief that the only way we will make it to the end of the next week, day, or hour is to put on our "game face" and plunge back into the fray with a stiff upper lip. We look out at what we have to face, look inside at our own limited resources and energy reserves and resolve to dig in because there is no one else to handle it for us. That sounds lovely, but in fact, after the first round or so it gets tiring. After five-ish rounds it is downright exhausting, and after several years of doing that on a fairly regular basis, it becomes not only a habit, but an entrenched way of life. <br>
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So, what am I saying? Is it wrong to it survival mode and just grit your teeth and get through it? Perhaps not. Is it where we want to live? Not really. Even with a chronic illness, with frequent doctor visits, new prescriptions, side effects, lack of sleep, interpersonal stress, survival mode is not really a healthy place to live long-term. If it were, I'm pretty sure they would have come up with a more appealing name for it by now. The point is, we can go there for short periods, but some of us live there a little too often. Christ did not breathe new life into us simply to keep us barely alive and hanging on for dear life (though there are definitely times when that seems like it is all we can do). Christ came to bring us life that we could live abundantly. So how do we do that with a disease that seems to zap the life right out of you? Good question. I'm still working on that answer. <br>
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I think the key to abundantly living out faith in spite of chronic disease is to stop focusing so intently on what is wrong with us. Let me say that again -- <i><b>We need to stop focusing so strenuously at what is wrong with us and get our eyes back on the One who makes all things right.</b></i> That doesn't mean it's an easy thing to do. When you're in pain, the last thing you want is someone telling you to just not think about the pain and it will go away (that isn't usually true). Think about it though--there is pain in this world. There is heartache and tragedy and sorrow--all because of the curse. This world is inevitably broken and falling apart (much like our bodies feel on a daily basis). <br>
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We of all people have been given a unique opportunity to long all the more earnestly for the glorious appearing of our Savior. Our very bodies and the whole creaton are crying out in brilliant harmonies desperately yearning for Jesus to come back and reveal to us who we truly are. <br>
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It's not your typical take on chronic illness, but stop and think for a moment about the fact that your physical disease may, in fact, be pointing you and others to a deeper need. Rather than let us get too comfortable here and feel too much at home, we are given the privilege of longing for our true Home more than ever. <br>
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That is a gift--albeit a painful one. Whether the pain is cancer, accompanied by the constant worry of whether the treatment is working, or the constant torment of rheumatoid arthritis, or the steady pain and weakness of fibromyalgia, don't let the pain that accompanies you on your journey Home rob you of the joy that comes in this journey. It is not because we like pain or wish to suffer for the fun of it, but because we know there is great purpose in it, and a loving reason behind it all. There is joy in longing for the Home you have never yet seen. Thank God for yet another way we can see that we are merely travelers in this world, walking through broken, rough ground. <br>
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Unknownnoreply@blogger.com0Danville, Danville40.12448 -87.63002tag:blogger.com,1999:blog-7369112881675108174.post-16785849233768652612014-09-20T09:07:00.000-05:002014-09-20T09:07:02.131-05:00Responding to Shared Pain<div dir="ltr" style="text-align: left;" trbidi="on">
It's been a little while since I posted on here. The idea I want to talk about is one that has recently been driven home with such force that I couldn't entirely find the words or the strength to express it, but it is one that I believe is worthy of being said and emphasized. So, diving in...Here we go.<br />
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On August 27th my cousin Don was in a very serious car accident. I will spare the details because I know my family has seen them repeated ad nauseam on the internet, in person, over the phone, etc. He hit a semi and was very severely injured. He had to have brain surgery and leg surgery that same day while many of us sat in the waiting room trying to let the events of that morning process through our minds and hearts. People flew into action, whether donating money, or starting facebook groups with support and prayer, or even just bringing in food--everybody was onboard. This was good, this was encouraging, and I know it has helped to see people from all over the country praying for him and our family. <br />
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It's hard to describe with accuracy the bond between my cousins and I. It's often a flexible word meaning anything from your best friend and playmate growing up to someone you may have only met once in your life. In our case, it is definitely a case of the former. Our group of cousins has been extremely close and for that reason this event struck a deep chord with all of us.<br />
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I don't share this account looking to drum up more support for a cause, or even to try to evoke some kind of sympathetic gesture from anybody. I simply have been learning recently that there is a major difference between facing your individual level of pain (i.e. chronic illness) and facing pain that is so major it sends shockwaves out to an entire group of people simultaneously. There can be a tendency to think that your own pain only affects you (even though we've already discussed how that is not entirely true) but there is no denying the impact that an event like this has on many people. <br />
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It's not always easy to find a way to help in situations like this when you already feel so weak to begin with. When the people closer to the situation seem stronger than you are, and more able to control their emotions and face daily life, you might wonder if there is something wrong with you. "Why can they get it together and I'm still crying?" "Why can't I just trust God and go back to my routine without wondering about it all the time?"<br />
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What God has been showing me these past few weeks is that having a chronic illness doesn't mean you're the only person in the room struggling with something big. And while facing that at the same time as a family crisis may add another level of challenge, it doesn't mean that you can't be used of God to comfort other people or simply just be available for them. There is so much of living with fibro that means "you can't" but in this case, living with fibro means sometimes you can walk into this kind of situation and hold someone who's crying and feel enough of their pain to grieve with them, or share enough of the heartache that you are a safe person to be honest with.<br />
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Trying to go through life with your pain and sensitivity meters set about 50 levels higher than normal is often a very frustrating way to live, but every once in a while God gives glimpses of ways in which it is not roadblock, but a gift. When everyone around you is suddenly facing immeasurable pain and questions, you get the chance to set aside your daily pain and focus intently on reminding them who your Savior is. That is an awesome thing, and I think that is something I may have been much less ready to do had I not already been forced to slow down and do that to some extent to myself on a daily basis.<br />
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A side note: whether you have fibro or not, it is not a bad thing to set aside yourself for a while and enter into someone else's pain for a bit. The Body of Christ possesses an amazing strength in its inter-connections, primarily because of the connection starting with Christ. We lose a lot when we get so absorbed into our own routines and concerns that we only care about others when we're with them. Also, cliches are not always helpful. Sometimes it's hard to say the truth without it sounding cliched, but grasping for something out of the cultural tragedy box is only as helpful as the depth of the relationship. <br />
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Also, horror stories? Why do people feel inclined to share horror stories? If you've truly been through something like this, you have enough common ground to know you don't have to prove it by giving graphic details of other people's hospital stays... and if you haven't, you really don't have to search for it that way... :P Ok, that's all I have, I apologize in advance if this post makes no sense, but I felt compelled to share something and my mind and heart haven't finished the processing time yet, so it may be entirely jumbled. We do appreciate your continuing prayers as Don hopefully moves to a Rehabilitation Hospital on Monday. He is doing infinitely better than the doctors gave any chance to hope. For that and for all of this pain we praise God.<br />
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g&p</div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7369112881675108174.post-60132756433000064242014-08-24T15:15:00.001-05:002014-08-24T15:59:55.942-05:00The Theological Problem of Chronic Pain<div dir="ltr" style="text-align: left;" trbidi="on">
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It may be a little late into this blog to get into this particular thought, but I thought I'd give it a go anyway. I was thinking about this earlier today amid the craziness of church. My current musing is the idea of dealing with chronic pain. This whole blog is about dealing with fibromyalgia from a Christian perspective and a big part of that is dealing with chronic pain. Lots of people have some trouble facing the idea that God Himself might directly or indirectly be the cause of their pain. </div>
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Oddly enough, I am not one of those people. I find few things (if anything) as comforting as the idea that every struggle, difficult situation, and heartache has been chosen by God to make me more like Jesus. There are few things I can think of that would be worse than the thought that all of my pain in my lifetime is random and without purpose. So at the end of the day I don't struggle with the theological idea that God may leave me in pain for the rest of my life. That's the easy part. Getting on here every month or so and sharing truth that God has seen fit to teach me through this--that's not hard. I could write volumes of articles on the harsher mercies of God, the pain and suffering of following Him with cross in hand, and do it without challenging a single belief or conviction that I hold. </div>
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So why am I writing about this? There is one tiny part I forgot to mention that I do struggle with on a semi-regular basis, and that is where this truth becomes reality on a daily basis to me personally. It's easy to proclaim the theological purpose behind suffering, but it's difficult to tangibly serve God through it. I love sitting and theorizing about God's plan for different situations. I throughly enjoy seeing God glorify Himself through the suffering I see in believers around me, when they hurt deeply and still trust Him. What I don't have a very good appetite for is feeling the pain all the time and trying to still hold onto my joy. I don't mind the side of it that involves talking about how good and faithful my God is, but when it comes to Monday morning and I haven't really slept the night before and I'm gulping down a handful of prescriptions and over-the-counter pain mess just to make it into work close to on time, can I really claim that I am embracing God's harsh mercy for me? </div>
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Why is there such a disconnect between what my brain knows is true and what I feel in a regular basis about the way things are? Sadly, I am ashamed of the answer, but feel compelled to share it with you guys, because this problem is bigger than just me. Simply put, I still hold my personal comfort and desires before God's glory in my life. Doesn't that sound horrible when you say it in real words? But is it not true just the same? If I know that God is in control of my circumstances, and I know that He could have chosen differently for me, but He didn't... If I know that He will bring glory to His name through what He brings into my life, then why am I not more excited to watch and be a part of Him finishing what He's been faithfully working on since the beginning of time? I would rather be comfortable and happy than suffer--even if God is glorified through that suffering.</div>
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I would like to think that there are at least moments of clarity where I can see the bigger picture and embrace what God is doing whatever the personal costs, but I would be lying to you if I claimed that's where I am all the time. The majority of the time I am simply putting one foot ahead of the other, and hoping for an easier day tomorrow--that's just not good enough. That's not joy, and that's not a full picture of what the Gospel looks like. <b>It is not enough to </b><b>half-hearted</b><b> walk around wishing for "better" because there isn't better to be had. We are not here to be comfortable, and we are not here to be served. Are we better than Jesus? </b></div>
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So this is a challenge to myself as much to anyone else, but rather than just acknowledging in my mind that God's glory is more valuable to me than my comfort (all the while feeling disappointed with His plans for me) I want to truly embrace this idea when Monday hits and I feel like crud but have to go work anyway. I want to embrace this when I feel alone and isolated with nowhere to look but up. When I feel short on comforters or understanding from other people, I want to learn to be content in whatever situation I find myself in, because ultimately His glory and His name are worth a lot more than my comfort.</div>
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Unknownnoreply@blogger.com0Danville, Danville40.12448 -87.63002tag:blogger.com,1999:blog-7369112881675108174.post-17728369443380028812014-08-15T18:08:00.000-05:002014-08-15T18:08:28.893-05:00Fibro Meets Wedding Meets Gospel<div dir="ltr" style="text-align: left;" trbidi="on">
For those of you who just did a double take, no--Jon and I did not have yet another wedding. We did, however, spend a few days last weekend completely engulfed in the wedding of two very close friends. I won't pretend that there weren't last minute headaches, 5-a-day trips to WalMart for extra supplies, miscommunications galore, missed details, time crunch stress, disaster area kitchens, and most other hectic events commonly experienced in today's wedding scene. But typical wedding chaos aside, this was by no means your typical wedding.<br />
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I guess lots of people think that weddings they are heavily-involved in are special and unique. It sounds like a cliche. But while most maids of honor are out stressing over the details of the decorations or meticulously planning special parties for nervous brides, I hit my limits long before the work was done. To top things off, I realized the morning of the wedding I had completely forgotten to actually purchase the wedding present...<br />
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Yeah, it was that kind of weekend. I had a lot of times before the wedding when I felt like a complete failure--as a friend, as a wife, as a worker, as a Christian in general, as a human being...<br />
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Many of my thoughts in the weeks preceding the ceremony included all the traditional roles I wasn't living up to, all the responsibilities I was supposed to be helping with, and how overwhelming the remaining things to be done sounded. I felt trapped beneath the weight of culture's expectations for a wedding (including those specifically for a maid of honor). In moments of this lost perspective, my fibro reared its ugly head and tried to make me forget why I was even a part of the wedding to start with. That could have drastically affected my view of this wedding and the days leading up to and directly following it. I could have found myself sinking into the darkness and fog of comparison and guilt and wondering why God would put me in this spot of wanting to help and do certain things and then not give me the energy and power to do them. It could also have negatively affected relationships with all involved. Thanks be to God, it didn't. What I haven't told you about this wedding yet, is that both the bride and the groom were not in this wedding for themselves.<br />
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This might seem odd, especially considering culture's idea of what marriage is about today, but they truly weren't. From start to finish, this wedding was not about getting the perfect decorations, finding the most breath-taking photographic angle, or getting a picture-perfect cake. This wedding party was not there to worship the bride and groom. They were there to worship Someone else. This was a celebration--grace was on display. God brought together a man and a woman who are both fallen sinners, who both struggle to trust Him with their biggest, deepest, scariest hurts. A couple who are perfectly paired to bring out each other's most drastic insecurities and weaknesses, and yet are also perfectly designed to be the method most used by God to bring about their deepest healing. What we saw at that church was not a perfectly engineered and manufactured Kodak moment or a Hallmark movie ending. It was a public display of gracious, transparent, vulnerable, risk-taking, committed, self-sacrificing love. It was a symbol of Christ taking His church with all her weakness and vulnerability and scooping her up in His arms and embracing her to himself. It was a visible reminder that in Christ, broken people are restored and healed and loved. It was Gospel. <br />
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Why am I sharing this on a fibro blog? I know, this is sounding a little more wedding-ish than my normal posts, but I share this here because I was struck to the core by the amount of grace that went into this wedding. Not only was the public presentation extremely Gospel-centered, but the whole preparation and understanding involved behind-the-scenes exuded grace from start to finish.<br />
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I am pretty sure that I could be in the running for worst bridesmaid of the year, but that was not the point. The point was, grace. I felt so privileged to get a ringside seat for this tribute to Gospel. My fibro has kept me from doing a lot of things, and will probably prevent me from doing many more in the future. One thing it could not steal was the opportunity to proclaim grace with my sister and (now) brother on a very special day. I could relate to their feelings of vulnerability, and I could praise my God for their willingness to make that day about His work in their lives, rather than their feelings or plans. Whatever lies ahead for them, I know that God is in it, and He will finish what He has started in them. Grace and peace to Mr. and Mrs. Jeremiah Brown. <3<br />
<span style="font-size: large;"><br /></span>P.S. Your wedding present is coming in the mail ;)</div>
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7369112881675108174.post-5132704036322371522014-06-29T15:06:00.000-05:002014-06-29T15:06:43.651-05:00"Can you help me?"<div dir="ltr" style="text-align: left;" trbidi="on">
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I hate asking for help. Honestly, if I can find a way (however inconvenient or bizarre it may be) to do things on my own, typically I do. This may range from any number of things such as: moving heavy furniture, extensive work projects where I don't really know what I'm doing, driving long distances to pick up and drop off people, carrying things, and the list could go on, but it would probably get too specific. Suffice it to say, I like to do things myself. Like the proverbial toddler who takes 5 times as long to tie his shoes and stand up as it would take his mother to tie his shoes for him and carry him to the car--I metaphorically yell "I do it myself..." to the world and send a message of "beware" to any who would attempt to intervene.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I think some of this has to do with being an American and probably with being raised fairly conservative. I tend to fall on the side of people who idolize the American dream as not just having financial success, but having whatever I get as a result of my own hard work. Nothing is good enough if I didn't earn it myself, carry my own weight, keep up with the pack, don't drag others down, etc. There is an entire subculture of America that makes being self-sufficient a "Christian" thing to do. How did that come about? Does the Gospel look AT ALL like something you accomplish for yourself? Or something you deserve? Not in my Bible. Strangely enough, it is the exact opposite that is reflected in the pages from the very beginning to the very end. It is simply grace that allows us to take part in his story. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">So, why write about this topic on a blog about being a Christian with fibro? I'm so glad you asked... ;) What if, God gave certain of us believers these chronic, painful diseases and conditions so that we could be used to glorify him and help edify the rest of the Body of Christ (i.e. the healthy Christians)? What if part of our role as believers is to help and be helped by other believers? How can grace and mercy and compassion be shown to a community of people who all pretend they are fine and self-sufficient so that nobody looks down on them?</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">There is no shame in needing help. In fact, there can be danger in being unwilling to ask for help, because problems get hidden instead of solved, and people suffer silently unwilling to admit their struggle. The Body of Christ was designed to both accept and to extend help, as an arm might help compensate for the other arm if it happened to be injured. Our theology on salvation may be technically correct, but we have at large embraced a practical methodology that supports the idea that you may enter the Kingdom under grace, but once you get there you have to keep your place by works. Chronic illness makes requesting help even harder, because it is not a one-time thing. </span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif; font-size: large;"><i>People may be happy to help you once or twice, but when your needs become chronic along with your illness, and you begin to feel weak and helpless and like a drain on society; that is when you have to hold on to the truth that asking for help is not a shameful thing to do.</i></span></blockquote>
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I can't say anything to make it easier to ask for help, but I can urge you, my sisters and brothers in the Faith, to strive for a community of grace that encourages and embodies the love and understanding necessary to support those who are dealing with sometimes devastating and debilitating conditions on a daily basis. Let's put aside our instinct to judge each other and look down on each other or on the flipside to avoid asking for help due to pride or fear of judgment. Stop trying to be an island, and grow into the Body joined together by ligaments and joints. We are the hands. We are the feet. Let's get walking. </div>
Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7369112881675108174.post-26519361492883225612014-06-19T16:27:00.001-05:002015-04-24T00:55:23.065-05:00Stop Hiding<div dir="ltr" style="text-align: left;" trbidi="on">
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<a href="http://3.bp.blogspot.com/-5_5d-g0bsao/VTnaryY614I/AAAAAAAAHOY/ls9xFvG46j4/s1600/boy-666803_1280.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-5_5d-g0bsao/VTnaryY614I/AAAAAAAAHOY/ls9xFvG46j4/s1600/boy-666803_1280.jpg" height="425" width="640" /></a></div>
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<span style="font-family: Trebuchet MS, sans-serif;">I have a friend who is in great pain. She is often in pain to some degree, but there are times when it reaches an over-the-top level. Unfortunately, she lives far away and I have no way to go to her house and sit by her bed and talk to her. I can't drop by with something silly I found at the store or just give her a gentle hug to remind her that God still loves her. That is hard.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I have many friends who struggle with different areas, and for some reason, almost none of them live within hugging distance.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">It's hard to watch those you care about suffering. It's even harder when there is no clear cause and indeed no cure. With no definite end in sight, it becomes a waiting game. Even good days can be viewed as merely segues into the next crash. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Fibromyalgia is notorious for letting you have some good days and then making you pay for them slowly and painfully. There are times when it feels like a malevolent intelligence is orchestrating the pain my body experiences. I sometimes feel afraid to enjoy a good day, because I know the bad one is coming.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Sometimes this cycle of ups and downs feels oppressive to me and I enter what we like to call "the fog." It is a very dark, hopeless place that manifests itself in different ways depending on the situation. I can be there for days and just drift through my routine. When I'm in the fog, sometimes I am afraid to tell other people about it. I feel the weight that it puts on me and I hesitate at the thought of laying that weight on someone else, even a small part of it. I can rationalize it away as much as I want. <i>It's not their problem. They have enough to worry about without adding my load to theirs. They won't understand and it will just make it awkward for them when we talk. </i>And the list could go on and on. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">When I continue to resist letting others see the struggle and participate in it with me, the feelings of hopelessness and defeat grow exponentially until they seem to be the only thing I can see. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">It is easy, when in great pain, to feel like a burden on others. It's easy to hate the thought of being "the invalid" who has lots of needs and can't "carry their own weight." These thoughts can come like a mental avalanche burying you in feelings of inadequacy, false guilt, failure, depression, etc. But when this cycle of mental roller coaster takes over, there are some basic truths we are missing. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><b><span style="font-size: large;">God is sovereign over your pain.</span></b> </span></blockquote>
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<span style="font-family: Trebuchet MS, sans-serif;">God was not sleeping when you were diagnosed with fibromyalgia. He wasn't away on vacation when you began fighting the pain to get out of bed every morning. He was there. He is still there. This pain is not beyond the scope of His control. Nothing is.</span></div>
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<b style="font-family: 'Trebuchet MS', sans-serif;"><span style="font-size: large;">You are not the only one affected by your pain.</span></b></blockquote>
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<span style="font-family: Trebuchet MS, sans-serif;">The body of Christ is a BODY. When one part is hurt, the whole body is affected. We are members of the same body and our Head is Christ. When you hurt, the people who love you hurt too. They just may not feel free to tell you that while you're in the fog. </span></div>
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<b style="font-family: 'Trebuchet MS', sans-serif;"><span style="font-size: large;">God has a purpose for your pain that goes beyond you.</span></b></div>
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<span style="font-family: 'Trebuchet MS', sans-serif;">Believe it or not, God is using your pain in other people's lives. It doesn't feel like it, but God's plan for your pain goes beyond how it affects you. Others are given the chance to share in the struggle and face it with you when you share it with them. </span></div>
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<span style="font-family: 'Trebuchet MS', sans-serif;">Rather than hiding it and pretending it's not there, perhaps your role is to bless others by putting them in a position to experience grace along with you.</span></div>
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<span style="font-family: 'Trebuchet MS', sans-serif;"><span style="font-size: large;"><b>...the gospel creates community...</b></span></span></blockquote>
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<span style="font-family: 'Trebuchet MS', sans-serif;">The truth is, there is a weight to our pain, and sharing it will lay some of that weight on others' shoulders. But that is not necessarily a bad thing. The Gospel, when applied to daily life, creates community. Instinctively, we are now more concerned about others than ourselves. We want to give beyond our means to others. We hurt for those who hurt, and we celebrate with those who celebrate. We are community, and when one of us is hurting, the rest of us need to be ready to help. We are irreversibly connected to each other.</span></div>
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<span style="font-family: 'Trebuchet MS', sans-serif;"><span style="font-size: large;"><b>So...stop hiding.</b></span></span></blockquote>
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<span style="font-family: 'Trebuchet MS', sans-serif;">It is not our place to decide how God will use our pain in other people's lives. We don't get to decide that any more than we get to decide how He will use it in our own. We are simply tasked with being obedient and trusting that His purposes for this suffering are good and beyond our comprehension. </span></div>
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<span style="font-family: 'Trebuchet MS', sans-serif;">Let the body do what it is designed to do. Let others share in God's grace as He sustains you through your worst days and scariest nights. Take it to Jesus and don't resist when He sends His followers to help. Stop hiding your weaknesses and let grace and love and mercy and compassion be practiced within this family of believers.</span></div>
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<span style="font-family: 'Trebuchet MS', sans-serif;">So, when you are faced with something much bigger than you can deal with alone, find someone else who will walk down the road with you, and let them help you carry it as you both walk Home.</span></div>
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Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-7369112881675108174.post-89986288234745898512014-06-17T03:55:00.001-05:002015-04-23T22:22:06.363-05:00Finding Your Identity Outside of Your Ministry (Fibro in Ministry pt. 2)<div dir="ltr" style="text-align: left;" trbidi="on">
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<a href="http://3.bp.blogspot.com/-eoTsdE39nUI/VTm2zZ2DLYI/AAAAAAAAHN8/o1Yk5RdGeL0/s1600/binondo-gothic-church-1232012967020967tL.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-eoTsdE39nUI/VTm2zZ2DLYI/AAAAAAAAHN8/o1Yk5RdGeL0/s1600/binondo-gothic-church-1232012967020967tL.jpg" /></a></div>
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<span style="font-family: inherit;">From the title, you might be a little uneasy. It doesn't sound like a nice, warm and fuzzy topic. After all, as Christians we like the word "ministry" and it sounds very biblical and devoted to say that our identity is found within the particular ministry we serve in. In this same vein of thinking we call leaders by their roles within the church "Pastor Joe, Pastor Mark, etc." Even those who do not have the title in their direct address, we often still label as if that is their claim to fame. "John Doe, missionary to Chad," "James Johnson, evangelist and author," even "Sally Jameson, church pianist" or "Jenny Jackson, VBS teacher, nursery worker, alto in choir, casserole maker, etc." The list could go on and on. We constantly label people based on what they accomplish or how they contribute to the cause of Christianity. We are not alone in this--the secular world does the same thing. People are frequently identified by their contributions to the world at large, or their talent in a particular field.</span><br />
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When you are enveloped in a culture that treats identity this way, it's very difficult to see reality any other way. Perhaps it's true, perhaps your identity is tied integrally to what you do. This has been perpetuated, particularly for women in the church. You are what you do (a trendy spin-off of you are what you eat, I guess.) But is this true?</span><br />
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This question does not seem like a big deal to people who are easily capable of meeting the expectations of those around them and themselves. It doesn't bother people to tie their identity to something they excel at. It is appealing, is it not? Do we not all want to be defined by something that makes us look good? Do we not all want to find acceptance and appreciation from others based on our own works? It makes us feel good and accomplished. As Americans especially we are trained to "carry our own weight" and "judge people based on their actions, not the stereotype of their people group." This sounds good, right?</span><br />
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<u>This question becomes a big deal when you are chronically ill. </u> Suddenly, no matter how much you want to, you cannot fill the roles you used to. You may be unable to teach that class or sing in church or bring a covered dish to an activity. You might find that eventually you lose claim to every shred of "identity" you once had in the church. </span><br />
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Regardless of whether you're a pastor's wife, the children's Sunday School teacher, a long-standing member of the choir, or simply a faithful church member there is a sense of identity tied to your role. It may be small or it may be significant, but it exists. There can be a profound sense of loss when separated from your typical areas of service. What does a teacher feel when they cannot teach? Or a pastor who can no longer preach? A die-hard choir member whose voice is taken by circumstances beyond their control? What do you do when every area of service seems stripped away? What is left of your "identity"? Are you still valuable to God? Is it possible or even a good thing to find your identity outside of the ministry God gives to/takes away from you?</span><br />
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How can we know? Is my identity found in what I do? Should I define myself by the job I have or the volunteer services I provide whether in church or in the community at large? <b>How does God define me? </b></span><br />
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The Bible is clear in its teaching that our identity is found in Christ and in him alone. <i>We are not brought into the Body of Christ based on our actions, why should we start defining ourselves by them once we are in it? </i></span><br />
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It is very difficult to separate oneself from the ideas we grow up with and are taught from a young age. It is also difficult to define yourself one way when it seems everyone around you defines you by different criteria, but let me explain why I feel it is crucial to do just that.</span><br />
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If we allow ourselves to be defined by what we do instead of who we are in Christ, we are no longer standing in the grace of God that brings salvation. We have become children of works, trying to earn our position and keep our position through our own efforts. Unless we allow Christ to redefine us with his shared identity, we will continually fall short of our own internal expectations (as well as others) and when chronic illness interferes with fulfilling the roles we once held, we will face a spiritual identity crisis.</span><br />
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So what's the point of all this? Are we not supposed to serve and enjoy it? <u>Here's the point:</u></span><br />
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Whether chronically ill or not, we must NEVER define ourselves by our skills, talents, accomplishments, or even (dare I say it?) our service in ministry. No matter how good it sounds it is a vicious lie to say that we can be defined by our particular ministry. Say it again: <b>We are NOT defined by the ministry or ministries we serve in. </b></span><br />
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Therefore, we must refuse to be defined by anything outside of Christ. Christ is our identity. Christ is our head. Christ is now how we see ourselves. Christ is how God sees us. No matter how sick you are, how ineffective you feel, or how downright useless your life seems--Christ is your identity. If anyone has an issue with your physical weaknesses, they can take it up with your Head who is Christ. <u>If you have an issue with your own weakness--take it up with your Head. He has a purpose in how He has made you, and your worth to Him has nothing to do with you getting the job done.</u></span><br />
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How do we serve? We serve where we can, and we don't feel like failures for not serving where we can't. We follow Jesus, and let Him show us where to get involved, how much we should be involved, and what we should be doing. We do not let feelings of inadequacy and others' opinions determine how we serve God. We serve where we are, and trust our Father to give us His best.
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<span style="font-family: inherit;">[Consider this rant officially completed. :)]</span></div>
Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-7369112881675108174.post-65310388942815134312014-05-12T12:46:00.002-05:002015-04-24T00:44:17.401-05:00"Fibro Stole My Twenties..." (or did it...?)<div dir="ltr" style="text-align: left;" trbidi="on">
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<a href="http://4.bp.blogspot.com/-TdZZT0K4Q9g/VTnYEAGkn4I/AAAAAAAAHOM/QRZ4kmhO1-M/s1600/medications-342462_1280.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://4.bp.blogspot.com/-TdZZT0K4Q9g/VTnYEAGkn4I/AAAAAAAAHOM/QRZ4kmhO1-M/s1600/medications-342462_1280.jpg" height="425" width="640" /></a></div>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">For those of you who aren't aware today is actually Fibromyalgia Awareness Day. Rather than just do a quick "find appropriate graphic and post on your facebook wall to promote more uninformed throwing around of the term" I thought I'd take some time to post on something that God has been working in my life because of my fibromyalgia.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">"My fibro stole my 20's..."</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">"Fibro took some of the years when I should have been the most active and productive and left me hobbling around my house fighting to get out of bed every morning..."</span><br />
<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">"My condition killed my dream of becoming..."</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">These are all comments and thoughts you might find in online support groups around the world, whether for fibro specifically or chronic painful conditions generically. It is very common to hear people describe their illness in terms similar to these. They go through a grieving process where they deal with what they have lost as a result of their disease. Many times people move through it and get to the other side able to keep a mostly positive outlook on life and enjoy what they do still have. However, some never emerge from this period of grief and spend the rest of their lives proclaiming their condition and their pain to their friends and family and bellowing it from the metaphorical rooftops on internet forums and chat groups.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">I had this thought this morning on my drive to work. My exact thought being "Fibro has stolen my 20's from me." I thought about lots of my friends who are able to be nearly as busy as they were back in college, or others who manage to work a full-time job, be involved in every activity at church, have multiple children, somehow produce edible food at meal times regularly, etc. The list could go on and on. When I think about the things I'd like to be thinking about while still in my 20's instead of what I end up spending lots of time thinking about (prescription drug interactions, side-effects, "how bad is my pain today?", what kind of pain is it and what kind of drugs work for that kind of pain, etc.) I can get really frustrated. Sometimes I want to look at God and just ask, "What could you possibly have planned in all this that is good?" But only a couple minutes into my drive to work and pondering these thoughts, I had a pretty startling realization. It was obvious, and I should have started here, but I didn't. It dawned on me as I was muddling through all the dismal details of daily life with fibro, that Fibro didn't steal anything from me. That was such a big, new thought to me that I need to say that again for those who are skimming this post.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Fibro didn't steal anything from me.</span></blockquote>
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">It's true. Yes, it feels like fibro has taken away the possibility of living at the speed I thought best and most efficient. Yes, it has drastically changed the way I live each day. But, no, it isn't "stealing my twenties." This realization came in the form of several connected thoughts. To say that Fibro stole my twenties is embracing one of several lies. Either I'm saying that God had a better plan for me, and fibro somehow managed to mess that up so I'm stuck with mediocre existence Plan B. Or, I'm saying that this decade of my life actually belongs to me, not God, so if God is giving me fibro then He is stealing my life, health, enjoyment, etc. from me. Starting to see the problem? #1 - Fibro is NOT more powerful than God. #2 - My twenties don't actually belong to me anyway.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">So, let me sum it up this way--While life with fibro can be a very painful and sometimes spiritually challenging existence, it is not a second best "sorry it's the best we could come up with on short notice" type of life (even in ministry), and it is certainly not something that was mine to start with. God has a plan and purpose for even this, especially this. Though it can take things I love and put them on the shelf at times, though it can smash my dreams and plans to bits so I watch them shatter on the ground, it can't do that to God's plans for my life. The twenties may be when most people are most active and flexible and able to "conquer the world" but for me the twenties are definitely becoming a time when God slows everything down and waits for me to pay attention, and then shows His strength in my utter weakness. It's all His. There is not a second of my life that is not under His jurisdiction and control. If fibro is His plan for these years, then it is good. I may not feel it, or understand it, but that does not make it any less so.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">Whether you're completely oblivious to what fibromyalgia is, or whether you're living with it everyday and have for years--don't be deceived. Don't listen to the lies or plausible arguments. Not one moment of this is wasted or unnoticed by God. Embrace what He is doing, and stand in awe of His grace that He lets you be a part of it.</span><br />
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<span style="font-family: Helvetica Neue, Arial, Helvetica, sans-serif;">"In the hands of our Redeemer, nothing is wasted." - Jason Gray, Nothing is Wasted</span></div>
Unknownnoreply@blogger.com1