I've been reflecting a lot this Christmas season on the idea of Hope. As I sat in a Christmas Eve service this year, it occurred to me that this is really what the true gift of Christmas is all about. Humankind was lost in darkness, striving after a better life--a life with purpose and fulfillment--and the God of Hope who was ready for this all along sent His Son to the earth to make this kind of life possible. He restored the hope of the world by giving us the only thing that could restore us and bring us all out of death in to Life.
I love Christmas. I love the lights and the music; I love the food and the fellowship; and, I love the presents, both given and received. But this year I received possibly the best gift of all: the gift of Hope--the gift of an answer. One week before Christmas I had a doctor's appointment and, much to my own surprise, I walked out of that appointment with a diagnosis. I have Chronic Lyme Disease.
Technically speaking, this diagnosis is still tentative. There are other tests I can run (and probably will--if I can justify the cost just for the sake of more certainty) but they may or may not provide any more conclusive answers than what we already have. Based on the muscle tests I took at my appointment, I tested highly positive for all the treatment options that are most commonly used to treat Lyme and, based on those test results, my doctor determined that the diagnosis of Lyme is at least 60% certain. He also said he anticipates at least an 80% likelihood that the treatment regime he prescribed will be successful. Those seem like pretty good odds!
So, until I decide whether it's worth another few hundred dollars to try for a more definitive answer, I am perfectly comfortable saying that this is the answer I've been looking for. I have Chronic Lyme Disease. More importantly, I have hope of recovery again. I'd like to think that deep down I never really doubted that someday we would find an answer and maybe I could get my life back again, but the experience of actually seeing that light at the end of the tunnel ahead is a completely different feeling. Now I can be sure of what I hope for, certain of what I do not yet see. I know that there is something to hope for instead of just hoping for a better future.
In a nutshell, what Chronic Lyme Disease means is that I have an infection present in my body that is wreaking havoc on my whole system. Primarily, it suppresses my immune system, clearing the way for untold other viruses, bacteria, and fungi to come in and set up camp. The Lyme infection also releases a variety of toxins into my body, as a type of self-protection/self-preservation. These toxins also attack my immune system and adrenals (which regulate my energy, sleep patterns, stress levels, hormones, etc) as well as many of the neurotransmitters that are responsible for my mental functions, including concentration, short term and long term memory, reaction time, ability to make connections, mental stamina, and many others. This type of infection can explain basically all of the symptoms I've been experiencing in one way or another.
My doctor said it could take between 6 months and 2 years before I am fully recovered. There will be many different stages of the process, each with their own new challenges and possible side effects. The first step is to prepare for the metaphorical "battle" I am about to fight with my own body. The only way to fight an infection of this magnitude is with several rounds of different antibiotics. However, that process will cause more toxins and fungi to be released as the virus tries to fight back, so before jumping into that attack we are trying to make my body more prepared to handle the fallout. I am now on my second week of a wide variety of new supplements to serve this purpose. I am on very strong probiotics, antioxidant boosters, and something called BH4, to minimize the effects of the antibiotics on my system. I am taking a heavy-duty detox treatment which not only helps release and process the toxins in my body but also prevents them from being re-absorbed in the digestive tract (as they are with many detox therapies). This treatment also works to dissolve the "biofilm" which is a protective film bubble an infection creates to prevent antibiotics from being able to reach it. I am taking large amounts of Vitamin C, Vitamin, D, DHEA, and adrenal support to help boost my immune system so that my body can help the antibiotics fight of the intruder. Next week, I will be starting anti-fungals, Garlic (which is a natural antibiotic, antioxidant, antiviral, antibacterial, and anti-fungal), in addition to the antibiotic Doxycyclene.
In order to avoid many of the ill-effects antibiotics can cause, we are treating with a "pulse therapy" approach--which basically means we will alternate between different types of antibiotics every 6 weeks or so. This also helps prevent against building up an immunity to the medication. I am already getting a bit overwhelmed with the sheer number of new pills I am trying to keep track of (not an easy task when short-term memory is such a struggle already!) but I can already tell they are definitely making a difference. It will probably be several months at least before I start experiencing significant positive changes, and the whole process will come with many dips and bumps before a solid upward progression begins. However, after hearing from many sources that so often chronic fatigue issues are life-long, un-treatable issues, I am thrilled just to have the hope that a few years from now I may be back to relatively normal!
Before I wrap up, I want to take a minute to thank you all, my friends and family, for being so supportive and encouraging through this whole process. Your comments, notes, and especially your prayers have done so very much to keep me positive and get me to this point. I need you now more than ever, as I begin the real journey to recovery. May you all find encouragement in the God who offers His people a future and a hope (Jeremiah 29:11)!
Thursday, December 29, 2011
Friday, December 9, 2011
Entering phase... wait, what number are we on now?
Blah. I've had such a hard time motivating myself to get this post written and I'm not entirely sure why. Part of it, I'm sure, is how crappy I have felt of late. After a wonderful vacation week over Thanksgiving with remarkably little incident, I returned home and promptly found myself in a puddle on the floor all over again. Mostly I just feel so disoriented all the time. I can't hardly figure out where I am or what I am supposed to be doing. The good news (rather, great news!) is that my sleep schedule has improved dramatically since Thanksgiving break. I have to assume that this has something to do with some of the new supplements I am on because, even though it also required an enormous amount of discipline, willpower, crappy moods, and sleeping pills to start forcing myself to sleep at "normal" times and wake up feeling mostly rested, I know there have also been numerous times when I invested all those things in trying to re-set my internal clock and accomplished nothing. For those who don't know, over the last several months I have struggled immensely with various hormone imbalances that affected my ability to sleep. It got to the point where "normal" for me meant falling asleep sometime between 6-8am and waking up around 3-4pm. I would lie in bed for hours, too tired to think straight and yet something in my body was convinced it was time to be awake. If I ever did manage to fall asleep early (meaning 1-2am usually) I would wake up the next day feeling like I hadn't slept at all, despite having gotten 10 hours of sleep. All that to say, being able to be asleep by midnight most nights now and waking up by 10 or 11 feeling rested feels like nothing short of a miracle. Unfortunately, last night was the first night in a couple weeks that broke this cycle--I had my old insomnia until about 3:30 this morning and couldn't get out of bed until 1pm--but I am hoping this is just a fluke incident brought on by stress or something.
But I didn't meant to start ranting about sleep. I am determined to finally explain the results of my last doctors appointment. I think I mentioned that we were reviewing some blood test results and that, for the first time in years, they actually contained some semi-definitive results! Some context: we are searching for what kind of underlying cause is preventing me from being able to get better, and what may have started the chain reaction of problems in the first place. The last set of tests we ran tested for some rare genetic disorders and 2 of them came back positive--however they don't fully explain my symptoms and, frankly, I don't think one of them fits at all. If it weren't for the bloodwork clearly showing otherwise, I would be certain we were wrong, and I hope to discuss the possibility of a mistake more with my doctor soon. I have been treating these two conditions for the last 8 weeks and, though I have seen certain small improvements (such as in my sleep patterns) very little has changed.
The new tests we ran were testing for certain markers of a "biotoxin"--something in my body or blood that doesn't belong and is invisibly attacking my system. This could be anything from a fungal infection to a parasite to a viral infection. One of the tests (the Fibrinogen) came back normal, but the other two (MMP9 and MSH) were both radically high, clearly indicating that I DO have some sort of biotoxic infection! I'm sure I have never been so happy to learn that I am infected with some mysterious disease before as I am now. We are still a long way from a technical diagnosis, but at least now we know we are in the right ballpark. This fits very elegantly into my medical history as well, since all this started with an unknown viral infection (remember the "mono-like virus" I contracted in Jan 07?) and Epstein Barr (the mono virus) is commonly known to sometimes remain in the body and continue attacking, causing Chronic Fatigue.
So here's the bad news. #1: It is incredibly difficult to test beyond this point. There are some blood panels we can run for some of the more common viral infections--such as Epstein Barr or Lyme disease--but they are very expensive and usually inconclusive. From what I am learning, latent infections like this are just beginning to be identified by the scientific community. Not long ago, all that existed were tests that test for antibodies in the system; however these tests can only determine if the person has ever had the virus, not whether or not it is still present. There are tests starting to be developed, my doctor called them "PCR tests," which test for the genetic presence of a virus, but they are not well known and can only test for certain viruses. With so many different possible infections, each with unique strains and mutations, many of which may still be undiscovered much less measurable, it is an impossible task to try and test for them all. According to my doctor, testing in this way is basically stabbing in the dark hoping to hit the right one, and only gets a definitive answer about 20-30% of the time. Bad news #2 is that in most cases like mine, because the initial virus so severely weakens the immune system, it is very likely that there is more than one infection present in the system. We can guess that it started with some mutation of Epstein Barr, but given how many years have passed since then with a practically non-existent immune system, who knows what else I may have contracted. So, even if we did stab in the dark and happen to hit something, we couldn't be certain whether or not that is all there is.
So what now? While we make a decision about how much testing we want to, and can afford to, do right now, my doctor's office has a unique alternative method of diagnosis and treatment. Another reason I've had a hard time motivating myself to write this post is because I don't feel confident that I can explain how this works very well yet, so I will probably postpone many of the details until after I learn more. One week from today I am going in to try these "muscle tests" that my doctor believes is likely to be a more effective way to determine how to treat me. It may or may not explain exactly what kind of infection I have, but it sounds like it will help narrow down the range and hopefully provide information on what kinds of treatments will be effective. I know it has something to do with testing my muscle strength during exposure to certain compounds or medications to learn what my body "likes" or "dislikes," as it were. Hopefully I will know more after next week. I am (obviously) a little unsure about this process, but my doctor seems confident and optimistic about it and I am very excited to see what kind of results it produces.
Sorry this was so long. I am wrestling to find the balance between enough detail to be interesting but not so much that it becomes tedious. If anyone has questions or wants to hear more, please ask!
But I didn't meant to start ranting about sleep. I am determined to finally explain the results of my last doctors appointment. I think I mentioned that we were reviewing some blood test results and that, for the first time in years, they actually contained some semi-definitive results! Some context: we are searching for what kind of underlying cause is preventing me from being able to get better, and what may have started the chain reaction of problems in the first place. The last set of tests we ran tested for some rare genetic disorders and 2 of them came back positive--however they don't fully explain my symptoms and, frankly, I don't think one of them fits at all. If it weren't for the bloodwork clearly showing otherwise, I would be certain we were wrong, and I hope to discuss the possibility of a mistake more with my doctor soon. I have been treating these two conditions for the last 8 weeks and, though I have seen certain small improvements (such as in my sleep patterns) very little has changed.
The new tests we ran were testing for certain markers of a "biotoxin"--something in my body or blood that doesn't belong and is invisibly attacking my system. This could be anything from a fungal infection to a parasite to a viral infection. One of the tests (the Fibrinogen) came back normal, but the other two (MMP9 and MSH) were both radically high, clearly indicating that I DO have some sort of biotoxic infection! I'm sure I have never been so happy to learn that I am infected with some mysterious disease before as I am now. We are still a long way from a technical diagnosis, but at least now we know we are in the right ballpark. This fits very elegantly into my medical history as well, since all this started with an unknown viral infection (remember the "mono-like virus" I contracted in Jan 07?) and Epstein Barr (the mono virus) is commonly known to sometimes remain in the body and continue attacking, causing Chronic Fatigue.
So here's the bad news. #1: It is incredibly difficult to test beyond this point. There are some blood panels we can run for some of the more common viral infections--such as Epstein Barr or Lyme disease--but they are very expensive and usually inconclusive. From what I am learning, latent infections like this are just beginning to be identified by the scientific community. Not long ago, all that existed were tests that test for antibodies in the system; however these tests can only determine if the person has ever had the virus, not whether or not it is still present. There are tests starting to be developed, my doctor called them "PCR tests," which test for the genetic presence of a virus, but they are not well known and can only test for certain viruses. With so many different possible infections, each with unique strains and mutations, many of which may still be undiscovered much less measurable, it is an impossible task to try and test for them all. According to my doctor, testing in this way is basically stabbing in the dark hoping to hit the right one, and only gets a definitive answer about 20-30% of the time. Bad news #2 is that in most cases like mine, because the initial virus so severely weakens the immune system, it is very likely that there is more than one infection present in the system. We can guess that it started with some mutation of Epstein Barr, but given how many years have passed since then with a practically non-existent immune system, who knows what else I may have contracted. So, even if we did stab in the dark and happen to hit something, we couldn't be certain whether or not that is all there is.
So what now? While we make a decision about how much testing we want to, and can afford to, do right now, my doctor's office has a unique alternative method of diagnosis and treatment. Another reason I've had a hard time motivating myself to write this post is because I don't feel confident that I can explain how this works very well yet, so I will probably postpone many of the details until after I learn more. One week from today I am going in to try these "muscle tests" that my doctor believes is likely to be a more effective way to determine how to treat me. It may or may not explain exactly what kind of infection I have, but it sounds like it will help narrow down the range and hopefully provide information on what kinds of treatments will be effective. I know it has something to do with testing my muscle strength during exposure to certain compounds or medications to learn what my body "likes" or "dislikes," as it were. Hopefully I will know more after next week. I am (obviously) a little unsure about this process, but my doctor seems confident and optimistic about it and I am very excited to see what kind of results it produces.
Sorry this was so long. I am wrestling to find the balance between enough detail to be interesting but not so much that it becomes tedious. If anyone has questions or wants to hear more, please ask!
Monday, November 28, 2011
I think I lost November... does anyone know where it went?
Wow, over 2 weeks since I have posted and I definitely feel behind. I love this time of year--when the world quiets down and the people in it start to bustle. It is a time for baking and travelling and time with family and friends, planning and shopping and reflecting on the last year, which is quickly coming to a close, while preparing for the new year ahead. Beautiful. Unfortunately, this is also a time of year when difficulty with stress-management strikes me as a particularly difficult setback. I think everyone can sympathize when I say that whether it's trying to book plane flights and request time off work or trying to find that "perfect gift" for the in-laws or just trying to cram in as much "seasonal joy"--decorations, eggnog lattes, taking time to appreciate the pretty lights, etc--as possible, all the beauty and wonder that comes with this time of year so easily gets sucked up by the inevitably stressful hubbub. I'm so glad that in the midst of this there is still a holiday that reminds us to be thankful.
I feel like I have so many updates to post about, but I also feel it would be remiss of me to brush past this profound recognition I am having that it is really all the little things in life that make it worth living. I am so thankful for the life I have been given, even though I sometimes wish I could change so many things about it. I am immensely blessed. Today, I am particularly thankful for my family. I confess, I was apprehensive about spending over a week with my in-laws for thanksgiving. I do not do well with travelling, especially lately; I miss the comfort and familiarity of home--my own couch, my own food, all those things I didn't have room for in my suitcase--not to mention just the privacy of being able to make breakfast in my underwear or lie on the couch moaning when I don't feel good. Still, I am so enjoying this time to make my new family in my life feel like MY family (and not just HIS family). From the moment I arrived, they demonstrated a care and understanding that I think only a real family is capable of. I love these wonderful people and the way they live their lives. We share so many values and yet we have so many radically different experiences. I both love and hate this awkward but beautiful dance of trying to teach ourselves to each other. I am still learning to feel included and at home, but I think that is only natural when you are welcomed into a family of perfect strangers (marriage is such a weird event!).
I could not be more thankful for my husband. I married the most patient, caring, and flexible man on the planet. He dotes on me far more than he should and I really don't know where I would be if I didn't have him to take care of me. Possibly my biggest frustration with my health issues is how much I force HIM to sacrifice just to be with me. As if normal female hormones weren't bad enough, he gets extra large doses of my crankiness and irritability. He puts up with my violent, inexplicable mood swings, even when we both know there is no good reason for me to feel that way. He frequently has to set aside his own priorities and obligations to come feed me, make sure I take my supplements, or hold me when I start hyperventilating. He understands when we are in the middle of a conversation, an argument, or an activity and I suddenly have to stop everything and lie down for a while. I hardly know what will happen when, Lord willing, I get better; I think he will feel like he has so much extra free time! I could not have found a better man to stand by me while my life is turned upside down.
I could go on but I think that's enough mental exertion for today. Coming up next time--new blood test results and the tiniest glimmer of a diagnosis!
Blessings upon you all in this holiday season!
I feel like I have so many updates to post about, but I also feel it would be remiss of me to brush past this profound recognition I am having that it is really all the little things in life that make it worth living. I am so thankful for the life I have been given, even though I sometimes wish I could change so many things about it. I am immensely blessed. Today, I am particularly thankful for my family. I confess, I was apprehensive about spending over a week with my in-laws for thanksgiving. I do not do well with travelling, especially lately; I miss the comfort and familiarity of home--my own couch, my own food, all those things I didn't have room for in my suitcase--not to mention just the privacy of being able to make breakfast in my underwear or lie on the couch moaning when I don't feel good. Still, I am so enjoying this time to make my new family in my life feel like MY family (and not just HIS family). From the moment I arrived, they demonstrated a care and understanding that I think only a real family is capable of. I love these wonderful people and the way they live their lives. We share so many values and yet we have so many radically different experiences. I both love and hate this awkward but beautiful dance of trying to teach ourselves to each other. I am still learning to feel included and at home, but I think that is only natural when you are welcomed into a family of perfect strangers (marriage is such a weird event!).
I could not be more thankful for my husband. I married the most patient, caring, and flexible man on the planet. He dotes on me far more than he should and I really don't know where I would be if I didn't have him to take care of me. Possibly my biggest frustration with my health issues is how much I force HIM to sacrifice just to be with me. As if normal female hormones weren't bad enough, he gets extra large doses of my crankiness and irritability. He puts up with my violent, inexplicable mood swings, even when we both know there is no good reason for me to feel that way. He frequently has to set aside his own priorities and obligations to come feed me, make sure I take my supplements, or hold me when I start hyperventilating. He understands when we are in the middle of a conversation, an argument, or an activity and I suddenly have to stop everything and lie down for a while. I hardly know what will happen when, Lord willing, I get better; I think he will feel like he has so much extra free time! I could not have found a better man to stand by me while my life is turned upside down.
I could go on but I think that's enough mental exertion for today. Coming up next time--new blood test results and the tiniest glimmer of a diagnosis!
Blessings upon you all in this holiday season!
Friday, November 11, 2011
It is always interesting to see how people respond when I tell them about my condition. Oftentimes, it begins with a flash of understanding. "Oh! So that's why you always complain of feeling tired and leave events early (or don't show up at all)..." That small flash is then usually replaced with a very singular look which is something like a mixture of pity, concern, and confusion. I have come to interpret this look to mean something like, "Wow, that sounds really sad, but I have no idea how to relate to you anymore." It is the look that says the person wishes they knew precisely what to say and tries to find a way to connect their now jumbled thoughts with the unexpected fact they just learned. From there, each person's response will difer, depending on their own experiences, but the process always seems to begin with that look. It is a lot like the look that church people often have when I tell them my parents are divorced, or that single people get when they learn I am married (yes, I am stereotyping)--the look of "I really want to feel something for you but I'm not sure what because I've never been where you've been." I don't mind this look at all, please don't think I am offended by it, but it intrigues me.
It amuses me to see how much, despite this look, most people inevitably try to relate my situation to their own life, and then seem to immediately regret it. I can't help but smile when I think how many times I have heard,"not that this in any way compares to what you are going through, but. . ." or something to that effect. However, I think most people would be surprised if they knew what goes through my head at that moment. Please, do think that my life reminds you a little of yours. I hope that your struggles are different than mine, but don't assume that means mine are more grievous or more worthy of attention. For one thing, it is a blessing to me to know that I am not alone, and to toil alongside the rest of the human race. Perhaps misery just loves company, but I prefer to think that when we can acknowledge our issues together they begin to seem far less severe. When I am lying in bed on a sleepless night, it is such a comfort to remember that there are others who may be lying awake too. Just because your insomnia is stress-induced and mine is a hormone imbalance doesn't make one any better or worse than the other.
And that is what strikes me most strongly at those moments when people start feeling like they have somehow diminished my situation by relating it to theirs. Sure, it may not be the same, or even on the same plane, but I do believe there is a sort of cosmic balance in the types of struggles we each face. I often like to say that we each have our own cross to bear, and for me that is not a platitude that helps me brush off your pity, I really believe it. Mine might look heavier, but if it is it is only making me stronger. If your biggest problem is that you didn't sleep very well last night either then frankly I pity you, probably more than you pity me, for that means you have never had the opportunities to grow that I face every day. But I think it highly unlikely that that is the case. I think in reality if you were to open up about the biggest, most difficult struggle you are dealing with right now, mine would likely pale in comparison. The only thing that makes me different is that I am forced, or at least constantly invited, to air out my deepest pain on a regular basis. The practical implications of an illness are more difficult to hide, and so I learn to share my burden.
I just want to send this tiny consolation out into the world. It's okay that you don't really understand. I'm glad you feel like you can't relate. But I'm also glad for the ways you feel like you can. I would love to share in your sympathy and then return it, for I know your life is a struggle just like mine is. My prayer is that the sharing in it together will make both of us stronger in the end. When we can acknowledge that we both feel pain, fear, and anger then we can rejoice in the ways we feel comfort, restoration, hopefulness, and peace.
It amuses me to see how much, despite this look, most people inevitably try to relate my situation to their own life, and then seem to immediately regret it. I can't help but smile when I think how many times I have heard,"not that this in any way compares to what you are going through, but. . ." or something to that effect. However, I think most people would be surprised if they knew what goes through my head at that moment. Please, do think that my life reminds you a little of yours. I hope that your struggles are different than mine, but don't assume that means mine are more grievous or more worthy of attention. For one thing, it is a blessing to me to know that I am not alone, and to toil alongside the rest of the human race. Perhaps misery just loves company, but I prefer to think that when we can acknowledge our issues together they begin to seem far less severe. When I am lying in bed on a sleepless night, it is such a comfort to remember that there are others who may be lying awake too. Just because your insomnia is stress-induced and mine is a hormone imbalance doesn't make one any better or worse than the other.
And that is what strikes me most strongly at those moments when people start feeling like they have somehow diminished my situation by relating it to theirs. Sure, it may not be the same, or even on the same plane, but I do believe there is a sort of cosmic balance in the types of struggles we each face. I often like to say that we each have our own cross to bear, and for me that is not a platitude that helps me brush off your pity, I really believe it. Mine might look heavier, but if it is it is only making me stronger. If your biggest problem is that you didn't sleep very well last night either then frankly I pity you, probably more than you pity me, for that means you have never had the opportunities to grow that I face every day. But I think it highly unlikely that that is the case. I think in reality if you were to open up about the biggest, most difficult struggle you are dealing with right now, mine would likely pale in comparison. The only thing that makes me different is that I am forced, or at least constantly invited, to air out my deepest pain on a regular basis. The practical implications of an illness are more difficult to hide, and so I learn to share my burden.
I just want to send this tiny consolation out into the world. It's okay that you don't really understand. I'm glad you feel like you can't relate. But I'm also glad for the ways you feel like you can. I would love to share in your sympathy and then return it, for I know your life is a struggle just like mine is. My prayer is that the sharing in it together will make both of us stronger in the end. When we can acknowledge that we both feel pain, fear, and anger then we can rejoice in the ways we feel comfort, restoration, hopefulness, and peace.
Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.
-2 Corinthians 1:3-4
Thursday, November 10, 2011
Unexpected Blessings
One of the best and the most frustrating things about living with an illness like this is never really knowing what's going to happen next. Like yesterday, in the middle of a pretty average day I suddenly looked down at my fuzzy slippers on the floor and would swear I saw them moving. They would grow and shrink and wiggle back and forth... it was probably just something weird with my eyes trying to focus (a common problem I have) but I'd have to say hallucinations like that are not one of my normal symptoms!
More pervasively, it frustrates me immensely that I can't ever seem to count on anything, or look forward to anything, because I never know how I'm going to be feeling that day. My hubby asked me this morning what my plan was for the day, a perfectly common and innocent question, but it got me reflecting on how little I plan much of anything anymore. When I do, it is almost exclusively with things that are incredibly important to me. I never commit to anything very far in advance; I rarely invite people over except at the last minute; I don't make mental lists of things I want to get done the next day, or week, or month. I'm sure this isn't unusual for many people--I am married to a person who hates to plan ahead unless absolutely necessary!--but for me this is incredibly unusual. I plan everything. I live by my lists and schedules. I had a serious identity crisis when I graduated college and realized that my life didn't come with a syllabus anymore. :-p But now, planning ahead = added stress. Even the things I have to look forward to become a "project" to figure out how I'm going to make sure I will have the energy and motivation to make it happen. I have to rearrange my whole week, try to adjust my sleep schedule for a few days, make sure I give myself enough time to rest beforehand and afterward, give myself space to prepare emotionally for being around people or in an unfamiliar environment. All the while knowing that even if I do all of this I still might wake up that day feeling exhausted or moody for no good reason at all and all my striving will have been in vain.
On the other hand, I am slowly starting to learn what a blessing it can be--the not knowing. As someone who, by nature, tends to plan, prepare, and prioritize everything, it is a good exercise in faith to suddenly have my own life spin wildly out of my control. I am getting such a crash course in reliance in every possible way--reliance on God, on other people, on everything but my own abilities. I am forced to learn to trust that even in the face of complete uncertainty things will somehow eventually be okay. If nothing else, this lesson is revolutionizing my marriage! For someone like me, it is a truly terrifying thing to try and hand over responsibility for important life issues to another person, especially a person who has a shockingly different approach to handling things than I would. Learning to trust that there are other people out there who are equally capable of accomplishing things is not a lesson I thought I needed to learn until I came face to face with the reality that I was NOT as capable as I used to be. And though it is painful at times, it is a beautiful thing to look into the eyes of another person and say "I trust you to take care of this for me" and to look back and realize they are doing a great job after all.
More pervasively, it frustrates me immensely that I can't ever seem to count on anything, or look forward to anything, because I never know how I'm going to be feeling that day. My hubby asked me this morning what my plan was for the day, a perfectly common and innocent question, but it got me reflecting on how little I plan much of anything anymore. When I do, it is almost exclusively with things that are incredibly important to me. I never commit to anything very far in advance; I rarely invite people over except at the last minute; I don't make mental lists of things I want to get done the next day, or week, or month. I'm sure this isn't unusual for many people--I am married to a person who hates to plan ahead unless absolutely necessary!--but for me this is incredibly unusual. I plan everything. I live by my lists and schedules. I had a serious identity crisis when I graduated college and realized that my life didn't come with a syllabus anymore. :-p But now, planning ahead = added stress. Even the things I have to look forward to become a "project" to figure out how I'm going to make sure I will have the energy and motivation to make it happen. I have to rearrange my whole week, try to adjust my sleep schedule for a few days, make sure I give myself enough time to rest beforehand and afterward, give myself space to prepare emotionally for being around people or in an unfamiliar environment. All the while knowing that even if I do all of this I still might wake up that day feeling exhausted or moody for no good reason at all and all my striving will have been in vain.
On the other hand, I am slowly starting to learn what a blessing it can be--the not knowing. As someone who, by nature, tends to plan, prepare, and prioritize everything, it is a good exercise in faith to suddenly have my own life spin wildly out of my control. I am getting such a crash course in reliance in every possible way--reliance on God, on other people, on everything but my own abilities. I am forced to learn to trust that even in the face of complete uncertainty things will somehow eventually be okay. If nothing else, this lesson is revolutionizing my marriage! For someone like me, it is a truly terrifying thing to try and hand over responsibility for important life issues to another person, especially a person who has a shockingly different approach to handling things than I would. Learning to trust that there are other people out there who are equally capable of accomplishing things is not a lesson I thought I needed to learn until I came face to face with the reality that I was NOT as capable as I used to be. And though it is painful at times, it is a beautiful thing to look into the eyes of another person and say "I trust you to take care of this for me" and to look back and realize they are doing a great job after all.
Tuesday, November 8, 2011
I used to think I was good at tests ;-)
I went in today for some blood tests again. In conversations with people I've been calling this "Round 2," though in reality this is the 11th series of blood tests I have taken since all this started. I call it Round 2 because this is the beginning of the second phase of investigation since switching to my new doctor, whose strategy is one I can really appreciate--make a list of possible causes, order them from most to least likely, then start at the top and work our way down until we are confident we have the answer.
Round 1 entailed some of the most interesting theories yet and, amazingly enough, succeeded in giving us two more things to add to my current list of ailments. We tested my histamine, copper, and methelation levels (if you don't know what those are, don't feel bad. I still barely understand them!)--all of which are generally affected by genetics as well as external circumstances. It turns out I have two genetic disfunctions: high histamine and over-methelation. Oddly, over-methelation is almost always coupled with low histamine instead of high; I guess even in the category of rare genetic diseases I am still determined to be anomalous. According to my doctor, these two issues could, if coupled with some certain other factors such as habits, allergies, etc., might be able to account for most, if not all, of my symptoms. However, as encouraging as it is to have something definitive to say, the truth is my experiences are much better explained by another theory, which may be there in addition. Enter Round 2.
This time around we are testing for the presence of a "biotoxin"--anything in my body from a latent virus to a fungal infection to a parasite that could be preventing me from healing the way I should be after the 4 years of treatments I've done. Given the fact that my troubles all seemed to start with the mysterious "mono-like virus" in Jan 07, it seems highly probable that this virus (possibly in combination with other things as well) is at the heart of it. This series of tests may be the most rigorous and involved series yet. Today I got tested for several "markers" that should indicate whether my body is combating any type of biotoxin and confirm if there is, in fact, something there. If that comes back positive, we will embark on narrowing down what type of biotoxin it is so we can begin treating it. I should get the results back from today's tests in about two weeks, so here goes the fun sitting and waiting part. ha. It does feel odd to be hoping to find out I have some latent infection that won't go away, but as I'm sure many of you can understand sometimes it's just better to have a clear answer, and one that makes sense. Here's hoping!
Round 1 entailed some of the most interesting theories yet and, amazingly enough, succeeded in giving us two more things to add to my current list of ailments. We tested my histamine, copper, and methelation levels (if you don't know what those are, don't feel bad. I still barely understand them!)--all of which are generally affected by genetics as well as external circumstances. It turns out I have two genetic disfunctions: high histamine and over-methelation. Oddly, over-methelation is almost always coupled with low histamine instead of high; I guess even in the category of rare genetic diseases I am still determined to be anomalous. According to my doctor, these two issues could, if coupled with some certain other factors such as habits, allergies, etc., might be able to account for most, if not all, of my symptoms. However, as encouraging as it is to have something definitive to say, the truth is my experiences are much better explained by another theory, which may be there in addition. Enter Round 2.
This time around we are testing for the presence of a "biotoxin"--anything in my body from a latent virus to a fungal infection to a parasite that could be preventing me from healing the way I should be after the 4 years of treatments I've done. Given the fact that my troubles all seemed to start with the mysterious "mono-like virus" in Jan 07, it seems highly probable that this virus (possibly in combination with other things as well) is at the heart of it. This series of tests may be the most rigorous and involved series yet. Today I got tested for several "markers" that should indicate whether my body is combating any type of biotoxin and confirm if there is, in fact, something there. If that comes back positive, we will embark on narrowing down what type of biotoxin it is so we can begin treating it. I should get the results back from today's tests in about two weeks, so here goes the fun sitting and waiting part. ha. It does feel odd to be hoping to find out I have some latent infection that won't go away, but as I'm sure many of you can understand sometimes it's just better to have a clear answer, and one that makes sense. Here's hoping!
A Brief History
Every end has a beginning.
For me, it all began 4 years, 9 months, and 25 days ago when I had my first experience with an undiagnosable illness. Before then, I had been a reasonably normal person with a reasonably normal life. And then I caught a reasonably normal disease--mononeucleosis. Or maybe not. When a long series of mono tests came back negative despite the fact I was presenting all the symptoms, I was admited to the hospital for 3 days for more tests. When they all came back inconclusive, I was released from the hospital with the diagnosis of a "mono-like virus" (i.e. "it looks like you have mono but you don't") and the instructions to rest and drink lots of liquid until I felt better. In time (and with exorbitant amounts of Vitamin C--nature's miracle vitamin) I did feel better and naturally assumed that was the end of this fun life story to tell.
From then on, little by little everything started falling apart. It started in small, unobtrusive ways: weakened immune system, increased stress, bouts of depression, feeling extra tired, etc. As a perfectionistic honors student in a competitive program, these symptoms hardly appeared unusual. It wasn't until I started getting major infections every couple months, spontaneously bursting into tears from the stress, comtemplating suicide when I got depressed, and sleeping 10-12 hours and still being unable to get out of bed for more than a few hours before feeling ready to collapse again that I started really suspecting something might be wrong. By senior year, I was barely able to get up and go to class, I couldn't concentrate when I was there, and as soon as it was over I would rush home to take a nap. I found a man who put up with my crazy mood swings, helped inspire me to push through the fatigue, and had the understanding to drive me home (or let me sleep on his couch) when I was threatening to hurt myself, and the winter of my senior year we got engaged. I knew that anyone who could put up with so much was too good to lose. He, on the other hand, had no idea what he was getting himself into. :-)
Before we got married, I began seeing a doctor who identified that I had low adrenal function and was hypothyroid. The adrenal glands regulate the hormones in the body that support the immune system, help one cope with stress and process emotional responses (like depression, anger, or fear), produce energy both mental and physical, and regulate sleep patterns, among other things. When they become "over-worked" as a result of a stressful lifestyle or traumatic events (internal or external), a person can experience all the symptoms I had and more. I thought I had finally found the answer to all my problems! My doctor started me on some medication and rigorous vitamin supplements and my symptoms started to improve, long enough for me to survive wedding planning and a long honeymoon. I still can't help but wonder, if everything in life had gone smoothly after that would it have ended there? Would I have gone on to live the rest of my relatively normal life? Would that have been better? I may never know.
Instead, the first year or so of our marriage was filled with a jumble of car wrecks, unemployment, living with parents, moving every few months, bouncing from job to job, and all the while my health rapidly deteriorated. My doctor kept telling me I just needed to reduce my stress. . . and I kept trying to figure out how I was supposed to do that while having to work two jobs and live with my in-laws while my husband kept looking for work. I started having small seizures and blackouts when I became stressed or over-worked. There were many days when I could not get up out of bed for hours for lack of the physical strength. When I was offered a full time job in Colorado, my home state, as an innkeeper at a cozy bed and breakfast I thought that would be the perfect way to settle down into a comfortable, stress-free routine. And it was, for a while. But nothing in life is perfect and even the smallest stressors continued to grate on me. My stubborn determination drove me to keep pushing until I could push no longer and, on my way to work one day, I collapsed, hyperventilating, shaking uncontrollably, and completely unable to move. Needless to say I called in sick that day, and as a result of that one event, I lost my dream job. Homeless and jobless once more, we set out again into the world and I determined that I was going to take some time off, reduce my stress, and be done with my health problems once and for all.
Perhaps by that time I should have realized it wouldn't be that simple. To make a long story short, the following year just repeated the same cyle over and over again. I would take as much time off as I could to simply rest, relax, and recouperate; I would begin feeling a little better; we would run out of money; I would go back to work; and then I would eventually be forced to quit as my symptoms became severe again. I kept trying to blame my stress levels for my lack of recovery, but as the months passed (months of dutifully maintaining strict diets, medications, and other forms of treating my supposed illnesses) and every relapse became worse and worse, I began to suspect there might be more to my problem than we had guessed.
For the last 6 months I have set out to prove this. Step 1: take a REAL break. No work. Very few social activities. Very close attention to my bodies needs--sleeping whenever I am tired, eating whenever I am hungry, refraining from strenuous activity except when it makes me feel better instead of worse. Step 2: redouble my focus on nutrition, vitamin supplements, and whatever medicinal needs I have. I set out to learn everything I can about how the body works and what I can do to aid and speed my recovery based on what I know is wrong. Step 3: get a new doctor with more to contribute than "keep doing what you're doing and try to reduce more stress--that'll be $400." For the last 6 months I have done everything I am supposed to be doing and, though I have learned how to make life semi-tolerable and make good days happen a bit more often, the bad days keep getting worse and the good days are mediocre at best.
Conclusion: there is still more to learn. Fortunately I have found a doctor who is a big fan of running tests and already we are starting to get results, but there is still so much that is unknown. In the meantime, I still suffer from constant headaches, muscle pain, inability to concentrate, severe memory loss, uncontrollable weight gain, emotional instability, severe fatigue, lack of stamina, radical insomnia, and on the days when that is all I consider it a pretty good day. I cannot lie, there is nothing about this which is fun. This is not the life I expected. This is not the life I want. But it is the life that, for the time being, I have been given, so I will try to make the best of it. I am going to stop hiding from it or pretending it isn't so bad. I am going to stare it down and, Lord willing, I will win. There is a time for everything. Perhaps there must be time for this. The hope I cling to now is that there will be a time after this when all this will be nothing more than an unpleasant memory.
For me, it all began 4 years, 9 months, and 25 days ago when I had my first experience with an undiagnosable illness. Before then, I had been a reasonably normal person with a reasonably normal life. And then I caught a reasonably normal disease--mononeucleosis. Or maybe not. When a long series of mono tests came back negative despite the fact I was presenting all the symptoms, I was admited to the hospital for 3 days for more tests. When they all came back inconclusive, I was released from the hospital with the diagnosis of a "mono-like virus" (i.e. "it looks like you have mono but you don't") and the instructions to rest and drink lots of liquid until I felt better. In time (and with exorbitant amounts of Vitamin C--nature's miracle vitamin) I did feel better and naturally assumed that was the end of this fun life story to tell.
From then on, little by little everything started falling apart. It started in small, unobtrusive ways: weakened immune system, increased stress, bouts of depression, feeling extra tired, etc. As a perfectionistic honors student in a competitive program, these symptoms hardly appeared unusual. It wasn't until I started getting major infections every couple months, spontaneously bursting into tears from the stress, comtemplating suicide when I got depressed, and sleeping 10-12 hours and still being unable to get out of bed for more than a few hours before feeling ready to collapse again that I started really suspecting something might be wrong. By senior year, I was barely able to get up and go to class, I couldn't concentrate when I was there, and as soon as it was over I would rush home to take a nap. I found a man who put up with my crazy mood swings, helped inspire me to push through the fatigue, and had the understanding to drive me home (or let me sleep on his couch) when I was threatening to hurt myself, and the winter of my senior year we got engaged. I knew that anyone who could put up with so much was too good to lose. He, on the other hand, had no idea what he was getting himself into. :-)
Before we got married, I began seeing a doctor who identified that I had low adrenal function and was hypothyroid. The adrenal glands regulate the hormones in the body that support the immune system, help one cope with stress and process emotional responses (like depression, anger, or fear), produce energy both mental and physical, and regulate sleep patterns, among other things. When they become "over-worked" as a result of a stressful lifestyle or traumatic events (internal or external), a person can experience all the symptoms I had and more. I thought I had finally found the answer to all my problems! My doctor started me on some medication and rigorous vitamin supplements and my symptoms started to improve, long enough for me to survive wedding planning and a long honeymoon. I still can't help but wonder, if everything in life had gone smoothly after that would it have ended there? Would I have gone on to live the rest of my relatively normal life? Would that have been better? I may never know.
Instead, the first year or so of our marriage was filled with a jumble of car wrecks, unemployment, living with parents, moving every few months, bouncing from job to job, and all the while my health rapidly deteriorated. My doctor kept telling me I just needed to reduce my stress. . . and I kept trying to figure out how I was supposed to do that while having to work two jobs and live with my in-laws while my husband kept looking for work. I started having small seizures and blackouts when I became stressed or over-worked. There were many days when I could not get up out of bed for hours for lack of the physical strength. When I was offered a full time job in Colorado, my home state, as an innkeeper at a cozy bed and breakfast I thought that would be the perfect way to settle down into a comfortable, stress-free routine. And it was, for a while. But nothing in life is perfect and even the smallest stressors continued to grate on me. My stubborn determination drove me to keep pushing until I could push no longer and, on my way to work one day, I collapsed, hyperventilating, shaking uncontrollably, and completely unable to move. Needless to say I called in sick that day, and as a result of that one event, I lost my dream job. Homeless and jobless once more, we set out again into the world and I determined that I was going to take some time off, reduce my stress, and be done with my health problems once and for all.
Perhaps by that time I should have realized it wouldn't be that simple. To make a long story short, the following year just repeated the same cyle over and over again. I would take as much time off as I could to simply rest, relax, and recouperate; I would begin feeling a little better; we would run out of money; I would go back to work; and then I would eventually be forced to quit as my symptoms became severe again. I kept trying to blame my stress levels for my lack of recovery, but as the months passed (months of dutifully maintaining strict diets, medications, and other forms of treating my supposed illnesses) and every relapse became worse and worse, I began to suspect there might be more to my problem than we had guessed.
For the last 6 months I have set out to prove this. Step 1: take a REAL break. No work. Very few social activities. Very close attention to my bodies needs--sleeping whenever I am tired, eating whenever I am hungry, refraining from strenuous activity except when it makes me feel better instead of worse. Step 2: redouble my focus on nutrition, vitamin supplements, and whatever medicinal needs I have. I set out to learn everything I can about how the body works and what I can do to aid and speed my recovery based on what I know is wrong. Step 3: get a new doctor with more to contribute than "keep doing what you're doing and try to reduce more stress--that'll be $400." For the last 6 months I have done everything I am supposed to be doing and, though I have learned how to make life semi-tolerable and make good days happen a bit more often, the bad days keep getting worse and the good days are mediocre at best.
Conclusion: there is still more to learn. Fortunately I have found a doctor who is a big fan of running tests and already we are starting to get results, but there is still so much that is unknown. In the meantime, I still suffer from constant headaches, muscle pain, inability to concentrate, severe memory loss, uncontrollable weight gain, emotional instability, severe fatigue, lack of stamina, radical insomnia, and on the days when that is all I consider it a pretty good day. I cannot lie, there is nothing about this which is fun. This is not the life I expected. This is not the life I want. But it is the life that, for the time being, I have been given, so I will try to make the best of it. I am going to stop hiding from it or pretending it isn't so bad. I am going to stare it down and, Lord willing, I will win. There is a time for everything. Perhaps there must be time for this. The hope I cling to now is that there will be a time after this when all this will be nothing more than an unpleasant memory.
So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.
-2 Corinthians 4:16-18
Monday, November 7, 2011
Why This is Here
Every end must have a beginning. This is a beginning that exists to foster hope in the end. I have realized recently how many people in my life know so little about me. Other than a small community of friends and family members, most people know nothing of the health problems I have dealt with over the last several years. Only a small handful are acquainted with the details. I'm sure it doesn't help that I try to hard to maintain a semblance of normalcy. There can be comfort in having people that don't know--people around whom I can pretend, even if only for a minute, that I really am like normal people. On the other hand, I am learning there is also extreme loneliness in knowing that much of your life is a facade and no one knows it. Even when it isn't intentional, the image most people have of me is what I look like on a good day, when I am smiling because days like that are rare and I am energetic because I've been saving it up so I could have that one day out of bed. Certainly some degree of unauthenticity just comes with the territory--is anyone really open with their true selves, struggles and all?--but I want to do better. Moreover, I want to give the friends and family members in my life who would like to know the truth an opportunity to get it even when I don't have the energy or the desire to explain it over and over again. At it's heart though, this blog is mostly for myself. It is a way for me to record and remember the way it feels to be battling an unknown, debilitating disease. It is a way to let a future me look back and appreciate what I have come through and a way to remind the present me that a future awaits when all this will be over. Hopefully it will be inspiring and not just depressing. I want to share my story so that people, including myself, can see how much hope and joy there is to be had in the world. I pray that my vulnerability will mean something to someone. I also invite anyone who reads this to ask questions if you are interested or post comments if you also have something to share. May this bring us all one step closer to more open and honest lives.
God bless us.
God bless us.
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