5 Silly Things I Miss

5 Silly Things I Miss Because Of Lyme Disease

Even though the big stuff--fatigue, memory loss, seizures--are what makes Lyme so debilitating, 

sometimes it's the small things that I really miss the most.

5. Blow drying my hair

I'm not sure if this is more a result of the fatigue or just my muscle atrophy after several years of barely being able to move (much less exercise), but it's been months since I've been able to lift a blow drier over my head long enough to dry my hair.

4. Snacking

My medication schedule is so strictly regimented that I have very small windows of time throughout the day during which I am allowed to eat. I get 3 meals a day with 4-5 hour gaps between each during which time I am trying to squeeze in all the meds and supplements that need to be taken "away from food." And if for some reason I didn't eat enough at one meal (for instance, i ran out of energy to prepare more food), I just have to wait those long 5 hours, or else eat again and start the countdown all over again.

3. Driving

With the increasing frequency of symptoms like seizures and vision loss, I have had to completely stop driving during the last month or so. In addition to the serious inconvenience of having to get a ride to places like the grocery store on a regular basis, what I really miss is just the independence of being able to go out when I need a change of scenery or browse around a store just to get inspired about new things to try at home without worrying about keeping my ride waiting.

2. Glassware

You have probably heard at least a few of my stories of kitchen accidents. Whether it's memory lapses, like leaving the pyrex dish on the stove and accidentally turning on the wrong burner, or sheer clumsiness, like knocking over the wine glass, or the french press, or the coffee mug... point being, our house has suffered an inordinate amount of broken glass. To try and prevent more mishaps, I've tried to wean myself off using glassware whenever possible. I bought a bunch of plastic cups and bowls and am trying to habituate myself out of using the glasses unless absolutely necessary. I know it's for a good cause, but gosh it's frustrating to feel like a little kid who can't be trusted with the grown up dishes!

1. Dessert

There are things I love about my diet restrictions--eating more fruits and veggies, drinking a protein shake every day (I love the low-maintenance predictability!), and even the forced creativity to come up with new ways to eat things like beans and carrots every single day without getting sick of them!--but I do desperately miss being able to treat myself at the end of a hard day with a cookie or a big piece of cheesecake. I have never been particularly over-indulgent, but I never realized how much I took for granted the ability to treat myself every once in a while.

When it rains...

They say that when it rains, it pours. I find it a very odd quality about life that it really does seem that when bad things happen, they happen all at once. Perhaps, from a psychological standpoint, it is really the case that we are more prone to noticing all the bad things when we are already dealing with another. Or perhaps, on some level, it seems easier to tackle more problems when one is already in "crisis mode" and so we attempt to get them all over with at once. Perhaps, it is just often the case that whatever we are supposed to learn from our problems, we can only learn if the trial is overwhelming and the pain is significant. Whatever the case may be, I cannot deny how often it feels like it's just one thing after another.

I know this update is long overdue. It's been a month, almost to the day, since I've managed to sit down and reflect on my progress, or lack thereof, with this ridiculous illness. This is largely due to the fact that every time I try to think about things lately I get so completely overwhelmed that I can't seem to sort it out, much less document it in a way other people could make sense of.

A lot of great things have happened over the last month. I was extremely blessed by an unexpected visit from my dad a few weeks ago, which was followed shortly after by a visit from my mom and two sisters. It is always so great to have time with my family. I miss them all so much. I also completed (semi-successfully) another tax season with H&R Block and was honored with a pin for 3 years of service with the company. Oh my gosh what a relief it was when April 17th finally arrived and I knew I didn't have to keep stressing every day over whether or not I was going to make it into work! And it wouldn't be fair not to include that fact that, really for the first time in years, we have started to develop a real community of very present friends, largely due to the amazing people in our Life Group as well as a few other key people who have gone out of their way to demonstrate kindness and concern for us. In so many ways we are very blessed.

But as terrible as it is to say, the truth is even blessings often come with added stresses. I am being reminded lately how much having a group of friends also means constantly being invited to things that, no matter how much I want to, I just can't be a part of. Finishing my job means less money coming in, even if it wasn't that much to begin with. Even having my family here sometimes served as a reminder of how poor a job I am doing trying to care for myself when they aren't around and how abnormal my life is.

And then the universe throws some extra cherries on top. My husband lost one of his jobs last month, so the already serious financial problems have just gotten that much worse. My symptoms, both physical and psychological, seem to be getting worse. In addition to the typical Lyme issues, last week I got to add on an excruciating weekend of severe abdominal pain. After spending almost 5 hours doing tests at the hospital, it was determined that it was probably either a kidney stone or a problem with my birth control. Just because I didn't have enough going on right now. And, not surprisingly, a time with this much stress and uncertainty puts a great deal of strain on my marriage, enough so that I will probably get to add marriage counselling to my list of things to do very soon.

It's times like this when I find myself most prone to just lying on the couch staring at the ceiling and asking God, "Why?" I don't understand where grace is in all of this. I know that this is temporary and maybe eventually I will look back and understand. Right now I'm just hoping I can figure out how to make it until then.

My Soul, My Life, My All

Good Friday is honestly one of my favorite holidays. Certainly in the grand scheme it pales in comparison to Easter--what could be better than the celebration of a Savior rising from death to conquer death and save humankind for all eternity?! But to me, Easter feels like a small glimpse of a magnificent future yet to come--a celebration of an eternal glory beyond our current comprehension. Good Friday, on the other hand, I can relate to better. It is the acknowledgement of the necessity of suffering to bring about bliss; it is, arguably, the one moment in history when the Christ seems most human. It is the time when the one man who knew no sin still felt all the pain and suffering that it causes--the pain and suffering that we are ultimately freed from in an eternal sense, but in a very present sense we here on earth still feel it every day. Far be it from me to equate my suffering with that of the Savior of mankind, but still I say, the Christ on the cross I can relate to.

The image of the Lord suffering and dying has saved me in more ways than one. Exactly a year ago I found myself tormented by the concept of suffering. After 4 years of continuous declines in my health and (at that time) no explanation for what was causing it, much less why, I couldn't help but find myself doubting whether God was really all he was cracked up to be. I couldn't deny the existence of a higher power, but the evidence that He was a caring, loving, and eminently good person seemed to dwindle when compared with the vast amount of seemingly needless suffering in the world. Not only my own suffering was on the table, but that of the whole world. Though I tried desperately to believe that maybe I still had hope, maybe I could still be diagnosed and even cured, I was facing the reality that millions of others are not so lucky. Millions of people in the world suffer from undiagnosed, untreated, or incurable diseases--to say nothing of the other evils in the world! Why, when presented with a young, beautiful, intelligent, charismatic girl who would have done almost anything to please Him, would God choose to leave her bedridden, unable to complete basic functions much less win people for His kingdom? It was beyond unfair; it seemed downright unreasonable. And if God were so unreasonable, He was not the same God I had always trusted and believed in. I continued in this downward spiral for months. Everything I'd ever believed was being called into question. I wanted desperately to believe that goodness of the sort that I'd grown up believing could really exist. I just couldn't find it in the midst of so much pain.

I started attending church regularly again (as much as my condition allowed at the time), hoping I could either find answers or find confirmation that my worst suspicions were correct--that the God I was looking for didn't exist. Months past and little pieces of truth started worming their way into my heart, but I couldn't find the faith to really be able to trust a God who allows so much pain. It wasn't until that powerful night at a Good Friday service one year ago that something in my heart and head finally clicked. I was reminded that Christianity isn't about happiness and everything working out perfectly. True Christianity actually proclaims a very bizarre sort of happiness--the kind that usually only comes about after extreme difficulty. God doesn't say life will be easy or happy. He does say He will make it worth it. The idea of the very Son of God being sent to die painfully, only after being tortured and ridiculed, and going to His fate willingly (albeit, perhaps, reluctantly) is an extraordinarily humbling idea to confront. I have to assume that Christ understood the purpose for His suffering; however, I'm inclined to think that even if He didn't He still would have done the same. "Not my will but yours be done" doesn't include caveats about getting to know why things have to happen the way they do.

Were the whole realm of nature mine, that were an offering far too small
Love so amazing, so divine, demands my soul, my life, my all.

Hearing that age-old song written over 300 years ago, seeing before my imagination the most powerful image of love and suffering united, I finally understood who God really is. He is the God who cares so deeply for the suffering of humans that He sent His only Son to die so they could have the hope of a better future. He experienced firsthand the trials and torments of being human so that we could have a Mediator who understands our pain. He understood that even the deepest suffering can be given meaning in the end.

A God like that is worth it. At least I think so. In view of that kind of love, it is not hard to lay down my life, my soul, my all. How can I do any less? And once I do that, my life is not my own anymore--He can do with it whatever He wills. Not my will but Yours be done. I hold on to the hope that all the suffering is for a purpose and something good will come of it someday. But the truth is, even if it doesn't, it's okay. He doesn't owe me a happy ending. Then again, He's already given me one--the hope that any sufferings in this world are temporary. I owe Him everything for enduring the torment He endured on my behalf, and yet He goes a step further and rewards me with the promise of life beyond the grave free of all pain and suffering! I can most definitely believe in that kind of God. Can't you?

One year later, I already see glimpses of goodness coming out of the struggles I have had to endure. I started this blog for that very reason in fact--I now believe that my story can be a source of hope and encouragement instead of just pain and doubt. I didn't get the kind of life I expected to have when I was a kid dreaming of how I was going to change the world for Jesus. My "ministry" is a unique one, and an annoying reminder to me that God didn't need all the things I thought made me valuable--youth, beauty, charisma, etc. All He needed was a body that was fallen and a soul that was redeemed. With those, He is creating an incredible image of where grace meets suffering. What better ministry could I ask for than to be molded into a modern-day reminder of Christ on the Cross?

God is good indeed.

To Begin means also To End

This week I've been thinking a lot about life ending. I know that sounds really morbid, and at times it is, but it may not be what you think. It is true that people can, and do, die from Lyme. I would by lying if I said this wasn't a very real concern for me. Even when it's not the disease that kills, there is a tragically high rate of suicide among Lyme sufferers. The emotional and psychological effects of this disease are unlike any other illness I've heard of. To be plagued by deepest depression and anxiety on a regular basis, knowing that even with treatment it will be years before you ever really get your life back, seeing all the constant pain and worry you are causing to your family and others who care for you--honestly it's no wonder to me that many can't handle it all. I know with confidence that if it weren't for my family, friends, and most importantly my faith, I would not have made it this far. I do not believe I could ever go so far as to take my own life, but again, I would be lying if I said the thought has never crossed my mind.

However, this week I've been thinking more about other ways that life can end. Or perhaps more accurately, ways that it can change, because oftentimes changes feel like ends. As you all know, I recently began a major change in my treatment--one that is likely to cause a lot of difficult and painful reactions, which are the signs that it is working. There are, of course, two sides to this coin, and my last post focused on the upside--the fact that the treatment is working and I can make some real progress in the fight against this disease. This week, as I've found myself physically bedridden, emotionally falling apart, and psychologically terrified, I can't help but recognize the flipside--the fact that ready or not I am entering another new phase of life and it isn't going to be a pleasant one.

Yesterday I literally cried for almost 5 hours straight. I know there were a lot of things coming into play--stress, hunger, sleep deprivation, and my ever-changing hormone levels--but the only thing I could think about was how much I felt like my life is ending. I know it sounds over-dramatic, but just go with me for a minute. For the last 5 years I have been fighting this constant battle between allowing myself enough normalcy (in the form of having friends, attending church, trying to work, etc) to be able to feel human, and recognizing that I'm just not able to sustain the kind of schedule and interactions that I need to do so. I can't really invest in relationships well when I can't attend the parties and events, coordinate the get-togethers, or even have people come to me, especially on days when I can't stand up much less drive, or move my mouth much less have a conversation. I can't sustain a job, not a real one anyway, when I can't see well enough to drive to work half the time, can't stand long enough to put clothes on oftentimes, or simply can't remember what day or time it is. But despite the fact that I know these activities are slightly out of reach for me right now, I can't seem to help myself from wanting them, and being willing to try to get them anyway. And amazingly enough, for brief periods of time, it works.

Despite all the crises and complications, within the last few months I started to feel an amazing semblance of normalcy creeping into my life. I had a church family, people who care about and will go out of their way to be a part of my life sometimes. I have had a job that, even though my hours were sporadic and short-lived, was willing to work around my chaotic and maddening lifestyle so that for brief periods of time I could feel like I did something that mattered. I had an apartment with a year-long lease--the longest I have lived in any one place since I left for college--where it was worth the bother to decorate and make it feel like home. It is a bizarre existence certainly, when it is constantly interrupted by the inevitable "bad days" and the medications and diet restrictions and absurd sleep patterns, but at least it felt like mine. And suddenly I feel it all slipping away.

Now, even on the "good" days I find my vision is blurry almost constantly. I can barely even watch tv anymore because I simply can't see it. My arms and legs are in constant pain that gets worse whenever I sit or stand for more than a few minutes at a time. It takes enormous effort to walk to the kitchen to feed myself and I have to spend at least a couple hours trying to think of what I can eat beforehand because I can't hold a thought in my head long enough to process options or decisions of any kind. The "bad" days add on seizures, paralysis, muscle spasms, blackouts, and a constant sense of having no idea where I am or what is going on around me. I'm still clinging to all those things that I care so much about, but I am facing the reality that many of them simply aren't an option anymore. My job has to end--I'm praying I can muster a few more shifts since tax season ends in 2 weeks anyway, but I'm not counting on it. The long list of people that I've desperately wanted to spend more time with will have to wait. At best I might be able to muster a coffee date once a month or so on my rare good days (as long as they are willing to drive and put up with my intense scatterbrainedness) but more than that would be impressive. I don't know if I'll be able to keep up with my small group, my church attendance, etc. Even my marriage has a completely different dynamic; my husband returns to being a caretaker first, a companion second, and he's lucky when I can muster the ability to go out of my way for his needs. The life I knew, the life I had started to love so much, is ending.

I know that one thing ending means another new beginning, but that is small comfort when the new thing mostly sucks. :-P And I know that this is temporary; eventually all this pain will dissipate and I will be better than ever, and I have to believe that at that point it will all be worth it, otherwise I wouldn't being doing this. Still, it's just not fair. I shouldn't have to be forced to go back to a life with few friends, no hobbies, and barely any sense of being human. And what makes it that much worse is recognizing how many times I've been here before. Every time I try to reclaim even the smallest bits of the kind of life I miss so much, it's only a matter of time before it all comes crashing down again.

But maybe this is just what life is. I talked so much in my last post about the "seasons" of life, it would be foolish of me not to recognize that change is just a part of it. Sometimes the change is painful. Sometimes it brings joy that makes it all worth it. At best my life is just a more extreme picture of the same kinds of changes that everyone faces at some times or others. Still, it makes me want to proclaim with wild vehemence to enjoy the life you have because nothing is permanent!!! Whether it is cut short by death or illness or just the voice of God telling you it's time for something new, life is ultimately governed by powers beyond our control and it would be a real shame to fail to enjoy the good things while they last.

Death is a part of life. And just like the hope of Rebirth, it also proves how valuable the living really is. So LIVE, my dear friends, for my sake if nothing else. Take time to notice the little things that make you human, that make life worth the hassle. Spend time with one another and see how powerful it is to be able to share yourself with another. You just never know when life as you know it is going to change.

Signs of Spring

Today is the first day of spring and I am feeling very much in the mood to celebrate the newness of seasons. Maybe that explains why I am sitting here in shorts and a tank top next to an open window despite the fact that it is only 45 degrees outside here in Colorado. :-P As I feel my toes slowly starting to get numb ask I try to bask in the sunshine streaming through the window, I am beginning to realize that the joy I feel in celebrating the arrival of spring probably has less to do with the actuality of spring and more to do with what it symbolizes. It is not just sunshine and warm weather, blooming flowers or a time to plant gardens. Spring symbolizes the hope of something new and beautiful. Rebirth after a cold, harsh winter. Some might say that winter is just as natural as spring--it's the natural circle of life to have birth and death in equal portions--but I think there is still something in the human psyche that tends to see winter as a necessary stage because it makes us rejoice that much more in spring. It is the fasting before the feast; too much of either would be unnatural, but the one makes you enjoy the other so much the more.

The hope and promise of the future is especially on mind mind today after my doctors appointment yesterday. Most of you know, the last few weeks have been incredibly difficult with several medication issues, herx reactions, and some truly terrifying symptoms. The "6 week" treatment on the Doxycylene, which actually took almost 12 weeks to complete because of how many times I had to stop the antibiotics because of the severity of my symptoms, finally ends this week. I went to the doctor yesterday to discuss where to go from here. I rather expected them to say I would need to stay on the Doxy a few weeks longer and hope for the best. The message I ended up getting was very different!

After running some tests and discussing medication options with the nurse, I sat down with my doctor, who looked at my charts and the first thing he said was, "You are taking a lot!" That alone made me feel a little bit better. At least I'm not the only one who gets a little overwhelmed when I look at the 2 FULL PAGES of meds and supplements I take each day. I think his exact words were something like, "I would love to try to simplify all this for you if at all possible; however, the way things are looking right now, your body is giving all the signs that it's ready to really fight this battle!" The muscle tests showed that I don't need the Doxy any more and I'm ready to start some more aggressive antibiotics. My immune system, which has been practically non-existent for the last few years, is starting to function again and is gaining strength very quickly.  Every person is different, and of course every new set of medications comes with new sets of possible complications or side effects depending on how my body reacts, but it was a huge encouragement to start hearing my doctor talk about the overall treatment period in terms of months rather than years.

Now I'm not going to lie. The new set of meds he put me on now is more likely to make me feel worse instead of better, at least in the short term. Viral infections produce toxic "die-off" symptoms, just like you see with Candida or other fungal infections, known as the Herxheimer reaction, producing symptoms like fever, headaches, hyperventilation, muscle pain, fatigue, etc. Going after the infection more aggressively significantly increases the likelihood of experiencing this reaction (or "herxing" as they call it). However, if my body can keep up with the toxin load, this more aggressive approach will be far more effective at killing the infection and possibly reducing the overall time-frame for recovery. I am definitely more than a little anxious about what this means for my overall functionality over the next few weeks/months, particularly as things are starting to get busier and more demanding with my job. If I start having frequent problems with herxing, days when I can get out of bed may become rare, much less days when I can go in to work, go grocery shopping, or handle daily chores.

Still, I see this news as a powerful message of hope for future healing. The first day of spring does not magically make winter go away. Seasons are a process and it takes time, and sometimes the change from one season to another happens slowly and with several relapses (like last year when we had 80 degree weather in Feb and a huge snowstorm the first week of May!). I know there is still "snow" in my future, but the important thing to recognize is that there is change! Things are happening! And even if the early buds of spring are overcome by another late frost, they are still a reminder that the process is still in place. Winter cannot last forever. Rebirth will always come eventually. And that is something worth celebrating.

In the Moment

I've been reflecting this week on how much this disease is teaching me to live one day, one moment, at a time. I am not by nature an "in the moment" kind of person. I am a planner. I am very future oriented in general. My day-to-day pleasures include things like looking at my calendar several times a day and committing to memory important upcoming events, or browsing apartment listings in areas where we might someday be living. Yes, I do these things for fun. :-P

I am also very past-oriented. I am extraordinarily sentimental. When I daydream, I am almost always re-living past experiences in my head. Whether it's remembering fond experiences from my childhood or mentally rehashing my most recent conversation to consider what I wish I had done differently, I spend a lot of time thinking about things that have already happened.

I believe that either one of these tendencies can become unhealthy--becoming obsessed with the future so much that I see no joy in the present or so absorbed in my past that I don't want to move on. But in general I think I successfully avoid these pitfalls. I don't deny, ignore, or resent my present; I just don't really think about it much. I remember I once described myself to my husband as someone who is in the present merely by default, because I am straddling it with one leg in the past and one in the future.

This week especially, I find myself robbed of this position. I've had a rather odd combination of symptoms this week in that my energy level has been fairly good and my emotional fluctuations are mostly under control but I've been particularly struggling with my mental acuity. This afternoon, for the first time in my life, I literally could not remember my own name for several minutes. I can take in information and process it for a few minutes at a time and then it is just gone. I have had to write down ALL important information during the day, such as the exact times I eat or take my medication, because otherwise I won't be able to remember when it's time for the next dose, even though the last one was only 30 min ago. Before I got into this habit, there were several times when I would look up at the clock to see if it was time for more and find myself completely at a loss--unable to remember if I had eaten anything, drank anything, or taken anything all day. I know people often joke about not being able to remember what they had for breakfast, but let me tell you it is a singularly bizarre experience to really not be able to remember ANYTHING that has happened to you all day!

Much as I hope this goes away soon, I will say it has given me a new appreciation for the small moments God gives us. It can be freeing not to be constrained by feelings of what I am "supposed" to be doing that day (because I simply can't remember whatever it was I had hoped to get done) and to just ask myself in each moment, "what do I want right now?" In an inexplicable way, I almost feel like I can sense God's presence more strongly minute by minute than I can when I am so focused on trying to put all the pieces together myself. I have to trust that, even though I can't remember where I just came from or anticipate where I am going, He is leading me moment by moment to right where I need to be. I miss being able to see the big picture. There are other unique blessings that come through being able to observe from past through future the ways God works that I miss out on when my scope of vision is so small. But for someone like me, who really struggles to simply be present in the present, I think this is a lesson I need to learn.

Toxic Waste

Okay, finally time for another Lyme-related update. I've been so caught up lately in processing everything else, I forgot how behind I am in logging health issues.

I think when I last left off I had just started on the antibiotics again after a couple weeks off to ramp up some new additions to my medication plan and I was already feeling fatigue-related side effects from starting up the antibiotics. Upon talking with my doctor about the severity of my symptoms, he decided to go ahead and pull me off the antibiotics AGAIN and try adding two more homeopathic remedies for toxin elimination. I have spend the last 2 weeks increasing the dosage each day on these new things and started back on the antibiotics today (which for me started at about 8pm last night--yes, my sleep schedule is still a nightmare incarnate). Annoyingly, it seems like the new detox drops have also been causing muscle fatigue even without the antibiotics, though it's difficult to tell for sure because I've also had a few cold symptoms this week so it might just be the extra strain of a cold virus on my immune system causing the fatigue.

This whole process is starting to really get on my nerves. For one, it is just plain confusing. From what I have seen and read about other Chronic Lyme patients, most doctors seem to assume that issues like the severe fatigue, muscle pain, blurry vision, memory loss, etc caused by the treatment are just a given. They are just normal side effects of treating a chronic lyme infection. So, though part of me appreciates the fact that maybe I am just one of a lucky few who have a doctor who believes that many of these side effects are avoidable, it is also frustrating to feel like my treatment keeps being delayed by this quest for a solution to a problem that no one else seems to be worried about solving. Truthfully, I would almost rather have all the icky symptoms and just plan on cancelling my life for a few months if it means getting this treatment over with sooner. On the other hand, if, as my doctor keeps reminding me, doing so will just cause huge toxin buildup that isn't being dealt with, not only could the treatment end up taking longer anyway, the toxins could also cause long term damage to my liver or other organs. I suppose that would be bad. So for now I keep jumping through the hoops of my on-again-off-again medication schedule hoping that eventually all the pieces will fall together and start cooperating.

In other news, my body seems determined to maintain a completely backwards sleep schedule the last few weeks, where I wake up late in the evening and finally fall asleep around 8 or 9 am. Of course every once in a while I'll have a totally ridiculous break from the cycle, like on Monday last week when I woke up around 7pm as usual but still could not get to sleep, despite trying all day, until 7pm Tuesday night--a full 24 hours of "insomnia"! I got all excited the next day, thinking maybe after a normal night's sleep I could start waking up in the morning again like a real person. :-P With some effort (and several sleeping pills) I did manage to pull it off for a few days, until last night (i.e. Saturday morning) when I woke up at 5am after about 6 hours of sleep in such excruciating abdominal pain (I think pms related) that I could not possibly fall asleep again. After a couple doses of pain killers and about 2 hours writhing on the floor, the pain finally subdued, but by then I was wide awake. I've survived on 6 hours of sleep before, though it usually causes a lot of neurological fallout when I do, but I figured to keep my happily normalizing sleep schedule I needed to just stay awake... which I managed to do until about 9am when my brain just couldn't function anymore and I fell asleep again. Big surprise, I slept till 8pm--sleeping through several alarms set to remind me to take various meds--and here I am again at 7am getting ready to have "dinner" in about an hour. So much for sleeping during nighttime. Well, it was fun while it lasted.

Good news is, I have another dr appointment scheduled in about a week, so unless he decides to push it back again depending on how this new attempt at antibiotics goes, I should get another chance soon to get some real answers about all this craziness. In the meantime, patience is a virtue...patience is a virtue...patience is a virtue...patience is a virtue...