Hope Abounds

This past weekend we spent out at my in-laws’ cabin. It has been a couple of years since I have been out there; and the first time tenting since I have, to my knowledge, been sick.  I was uncertain of my ability to make it out there (the drive alone is almost three hours, which takes a toll on my body); but, with the desire to share summer with my family, even if only for a couple of days, I was driven to push myself.

Dorky life jacket aside-- pure happiness!

 Once out there, the smell of fresh air and the sound of water against the shore filled my soul, and fueled me. My sister-in-law, nephew, and later, brother, came along as well; and spending time with them—sharing in each other’s joy, and taking delight in our sons’ experiences— multiplied the excitement tenfold.

So, pitching a tent outside the cabin, we camped for the first time together since our son was born. I waded in the beautiful lake water; a welcome respite from the heat. My family and I were on vacation! A real vacation. And it felt wonderful. It felt more than wonderful: it was pure bliss.

Other highlights were: jet skiing with my husband for the first time since we got engaged; laying on the beach to rest instead of my bed indoors; and being overwhelmed with gratitude and the beauty of God. I chased everyone around with DEET laden bug repellant (the kids wore it atop their clothes), and aside from feeling the need to do that, I didn’t have a care in the world. No paranoia at being out in nature. No fear of being out on the water. It was liberating, to say the least.

A date with my sexy husband <3

Tenting it, especially when sleeping in is still a necessity, turned out to be less than ideal. I got so overheated the next morning I almost had a seizure after I finally did fall asleep; between the late sunset and ongoing fireworks, I found it harder than ever to drift off! I went home with my siblings the night before my boys came home, and rested well in my own bed after being drained from the sunlight and over-exertion the days before.  As I said to Matt, this isn’t something I expect to be well enough to keep doing all summer, but it being the first time in years that I got to enjoy a piece of it, I sure am grateful for what I got!

Pulling Jack and Grandpa on the tube!

I was also reminded today, when commenting on the amazing smell of flowers and the summer air in our yard, that there was a time that I couldn’t handle those smells. Isn’t that wild!?! I had forgotten completely that last year around this time I asked Matt to display the gorgeous flowers I’d received in the kitchen instead of our bedroom, for hyper-sensitivity to the smell of them. So many baby steps that I don’t even realise are going on are taking place; so many strange and terrible symptoms— forgotten. It is weird and astonishing and wonderful to experience. It may not be all at once, but oh—to enjoy the smell of flowers again! To bask in the sun! To relish the company of others! It keeps coming along, day by day.

May God keep you safe as you enjoy what this summer has in store!

Blessings,

Kate

“The Lord gives strength to His people; the LORD blesses His people with peace.”

Psalm 29:11

“And [the LORD] said, ‘My presence will go with you,

and I will give you rest.’”

 Exodus 33:14

“As for me, I watch in hope for the LORD, I wait for God my Savior; my God will hear me.”

Micah 7:7

I keep putting off writing this update, because for some reason, I thought I had already shared the “latest news”.  I guess that’s what happens when you feature a guest post instead of writing your own. It still feels like an update! And yet, so much has happened since Jack’s birthday party. So much good.

Since the details of this post have already been written and dismissed in my mind, I am sure I am missing out on some information; hopefully it isn’t anything too important. You know that saying, “if it’s really important you’ll remember” or something to that effect? Drives. Me. Nuts. Clearly doesn’t apply to those with neurological deficits; and plain unfair to the person who just can’t put their finger on it.

Mother’s Day crept up almost unannounced. Time is a funny thing when you are sick: dragging by, and then gone all at once.  More often than not these days I find time just flies.  It is especially marked by the feeling of missing yet another one of life’s events. But not Mother’s Day. Not this year.  While being excruciatingly tired, I managed to get myself out of bed and out the door in time twenty-five minutes late for brunch.  I truly believe they should add that to “The List” of Lyme symptoms: chronic lateness. Mostly due to the fact that it is nearly impossible to wake up. Though I must say, with the help of sunlight and the SAD light upon waking up, it is finally getting easier to do so. I was far too sensitive to light before to even make that a possibility, so it is a milestone I am quite grateful for. 

Brunch was lovely.  Jack, as always, was thrilled to discover I was coming along. I received the usual joyful, “Hello Mommy!” chirped from the backseat, with an excited, “you’re coming, too?!!” as I entered the car. That alone gives me enough energy to keep going most trips. Besides getting to eat brunch next to my beautiful Grandmother and my little man, I was also able to keep my nephew occupied while we waited for the bill. But the best was yet to come! That afternoon, we packed up and headed to the park for a cook-out. It is a place that holds a lot of meaning for me; as a child, growing up, we spent many Father’s Day afternoons at that park with our extended family—racing siblings and cousins down the parallel slides.

  It is also the same place I met my husband for the first time; and later, the spot he brought me to when he proposed. We hadn’t been back since, and it was wonderful to be there together with our family. Matt brought my reclining lawn chair, which I expected to be in the whole time; but as it played out—I barely sat down the whole time! I raced my brother, sister-in-law, and son down those familiar slides (only to be beat by my son, I might add); I flew a kite with Jack, and later played Frisbee for a solid 15 minutes, both of which involved me running for the first time in 3 ½ years!! And, I walked much too far to find an indoor restroom at the end of it all, which left me spent, and needing Matt to carry me up the hill to our car.  But oh, it was so sweet while it lasted! (And being carried around by a sexy man isn't bad, either!) 

Jack and I had an adventure with gardening while Matt was away at work, filling the few planters we have downsized to with flowers my mother-in-law helped me select. It was my first attempt at planting without the instruction of someone experienced; and with Jack by my side, and his inheritance of generations of gardening genes, we set to work. And boy, was it hard work! I was full of pride and short of breath by the time I came in, muddy and satisfied with the work we had done.  I was able to get out another time before the week was over to get some overdo spring clean-up done in the yard, and go for a short walk with Jack.

Most recently, I have been herxing/battling a cold/recovering from my nephew’s birthday party, all since the beginning of June. It was a great gift to see so many friends that I hadn’t in so long, and put my love for party planning/hosting to use by helping out my sister a bit. And much to my surprise, during the party, I wasn’t anxious! In a house FULL of people, I was fine. It has since been a boring stretch, and very unfortunately (but not surprisingly) my low fell on Matt’s days off again. If I could just herx while he was away! One of these times, I will get in synch with his work schedule, and I will be able to share my days “off” with his. My last bit of progress to share is this: Last week I read a novel. It was the first time since I was in the States (September of 2011), that I was able to read a whole novel. Only this time, I could focus. I remembered the characters names and the plot, instead of having to push through for the sake of progress.  It was difficult to fix my attention to at first, but after the first chapter, I was fine. I can read! And I did read: a novel, all in one night.

I have been reading, hearing about, and receiving news of tragedy in its many forms, seemingly non-stop over these past few weeks; tragedies, that I feel, I could personally just not bear.  And it has impressed itself upon my heart the profound knowledge that everybody is carrying a cross. Everybody. For so long I felt that this couldn’t be happening to me; that it wasn’t. It was surreal: to have a seizure, to hallucinate, to undergo surgery, to give myself daily injections and IV’s. But slowly, and with help, I have borne this disease. It is my cross. I have wondered how anyone could be grateful for something like this, and I have tried. I have been indebted to the friends and family that have helped me along the way. I have praised God for the blessings and beauty he brings out of the ashes. But I had not yet been grateful for Lyme disease. How could I be? Now I know. Because it isn’t the cross of losing a child; it isn’t the cross of losing a spouse. It isn’t the cross of living with this disease, or any other; because I am not living with it—I am killing it. I am winning over it. I was dying, but I am not anymore. I can carry my cross, and I am so grateful it is mine.

Praying for all of you, and the crosses you bear.

Blessings and HOPE,

Kate

“Come to me, all you that labor and are heavy laden, and I will give you rest. 

Take my yoke on you, and learn of me; for I am meek and lowly in heart:

and you shall find rest to your souls. 

For my yoke is easy, and my burden is light.”

Matthew 11:28-30

'Antisocial Means Surviving' : A Guest Feature

 Today I have the privilege of hosting guest blogger, Marie Knuz; an inspiring woman and talented writer; as she begins to lead the caregivers of those suffering through this disease toward some insight in her blog, "A Personal Journey of Lyme: A Guide for Caregivers." Marie has been battling co-infections of Lyme for years; and in her blog, she shares her very candid, honest experiences of what it is like to live inside a mind wrought with Lyme. Her goal is to create a better understanding of patients with Lyme as they fall victim to this confusing disease; how it affects the people they care for; and advice for those who care for them. 

So, without further ado, I bring you:

  

Silence is Golden: 

Why Socializing is so Difficult

Antisocial Means Surviving

Lyme disease and its coinfections, particularly babeisa, are most noticeable in social type settings. Lyme often affects the brain, how we think and how neurotransmissions fire. You will notice that a Lymie may begin slurring words, talking slower, and needing wait time before responding. It takes lots of energy and effort to comprehend what is being said to us, and then to form a response. Sometimes neurotransmissions don’t fire properly, or connect, and then we can’t process at all. In my experience, the fatigue and weakness can be so bad that I not only slur words or struggle to find the right words, but my jaw will even start trembling. This happened after treatment started for me. As the infected blood cells die they release toxins and that makes it difficult to communicate some days.

A Lyme patient does not often benefit from visits or social calls. All our natural instincts to keep a sick person company or spread good cheer actually create more strain and fatigue. If the Lyme patient is fortunate, a recovery is possible and as time passes, socializing becomes possible. But for chronic Lymies, and those with the most severe symptoms, it is not uncommon for only one or two caregivers to be the only human contact.  

In the beginning of my illness, I was really sickened and weakened by weddings, big family get-togethers, and social events. I would help organize such events and be part of the weddings and even help orchestrate community festivals, only to get a migraine and severe bloating the day of the event. All the planning and the behind the scenes work were possible, but when I actually had to visit with people my body reacted violently. Once I started treatments, visiting and social engagements became impossible. Even one on one visits tired me out to the point of needing more meds, more pain killers, and extra hydration IVs. Social and emotional efforts create strong physical reactions.

 This illness is so different from anything else I have experienced, been exposed to, or researched. The babesia causes hypoxia, meaning a lack of oxygen. Can you imagine having to carry on a conversation and be sociable when you can’t breathe properly and your head is spinning? I don’t wheeze or gasp for breath all the time, but it happens. Mostly my organs are fighting for breath. My red blood cells are misshapen and the infected ones are dying, which means not enough oxygen is getting to my brain and heart. This makes visiting quite difficult.

Us Lymies fake it really well. We have had to. People do not easily understand the strain they are putting on us, and why would we want to hurt the feelings of those who mean well and wish to be helpful? It takes great effort to follow a conversation, make eye contact, and respond properly. Every ounce of energy goes into this task, and when the door closes behind the visitor we crash into bed and call the caregiver for meds.     

"It takes great effort to follow a conversation, make eye contact, and respond properly. Every ounce of energy goes into this task, and when the door closes behind the visitor we crash into bed and call the caregiver for meds."

This illness is difficult for friends and caregivers to understand because it is so foreign from other chronic ailments. We do need help, yet often can’t stand having people around. It is such a predicament to need house work done and meals made without talking to the person doing all the work. I found it easiest to post a list of what needs to be done, and then “hide” in the bedroom.

I hate to use the word sensitive, but in my case, and that of many others, sensitivity is another cause of discomfort in social settings. Noise causes me pain, and the sense of being overstimulated. There are some people who are so sensitive that spoken words and music actually are felt, as if the sound waves are crashing into their ear drums and skin. Lyme disease creates hypersensitivity to sound, smell, and sensation. Everything is heightened.

"There are some people who are so sensitive that spoken words and music actually are felt, as if the sound waves are crashing into their ear drums and skin."

I have to say that I never feel lonely or that I am missing out on things. I can spend hours alone during the day and be perfectly happy. Now, I am fortunate. It has only been six months. Those who have suffered for ten, fifteen, twenty years may experience loneliness. I can’t speak for them, but I imagine a contradiction exists in that they are lonely but cannot withstand all the physical and mental requirements of visiting.

I feel best when I am reading, writing, and watching TV. For a few hours each day I can “live” through characters in books. I can feel at home in Stars Hollow or Downton Abbey. I can listen in on conversations without having to respond. I don't have to determine what happens next. There is no pressure on me. I am an observer. Knowing other people are watching the same TV show at the same time gives a sense of community. And as Steven King explains, writing and reading is a bit like time travel. He may have written a book years ago, but at the moment that I am reading it, his words are speaking to me and his thoughts enter mine, and in a way we are together, conversing. If that is a bit weird for you, just think outside the box for a while at all the possible ways to communicate over time and space.

"For a few hours each day I can “live” through characters in books. I can feel at home in Stars Hollow or Downton Abbey. I can listen in on conversations without having to respond. I don't have to determine what happens next. There is no pressure on me. I am an observer. "

One of the other reasons social settings are bad for me or why I freak out if too many people are in my home is because I am immune-compromised. How can I relax and enjoy company when there is not only noise and overstimulation but also germs? I cannot pick up viruses from reading a book or watching TV. But going shopping or having people over always carries the risk of infection. When a person is immune-compromised a social engagement becomes a dangerous activity. Your child's runny nose may pose no threat to you, but to me, it is an invasion of viruses and bacteria that can cause pneumonia or a month-long set back in treatment.

The best we can do for a Lyme sufferer is allow a clean, safe home. A haven in which we feel protected. Caregivers must wash vigorously and even wear masks at times. The home environment needs to remain calm, quiet, and peaceful. When the illness steals everything from a person, it is nice to feel a sense of control over the home environment. Sometimes a one-on-one visit is very welcome, and if it is in my home, all the better.

In the beginning of my treatments, during my weakest months, and now when I have a setback, the best way to express my love to people is through emails and letters. I feel deeply for family, friends, and the community. My capacity to show that care is limited. And at times I fear that feelings have been hurt because I simply can’t attend a function or have people over. All I can do is hope that the illness is blamed and not me. I wish I was eloquent enough to express how draining it is to have company or carry on a conversation. The best I can do is say that it is a bit like being lost after wandering for hours. I am tired all the time, and I can’t quite find the words or meanings. If I could just write my conversation out with you, take my time with it, have a couple hours to edit and revise, then I could communicate better. Writing and reading require different brain functions than speaking. Written words are much different to execute than spoken.

"I feel deeply for family, friends, and the community. My capacity to show that care is limited. And at times I fear that feelings have been hurt because I simply can’t attend a function or have people over. All I can do is hope that the illness is blamed and not me."

If you are the "lucky" one who is deemed access to my home please know I am putting everything into you and our visit. I am not so bad compared to other Lymies. If you are visiting a severely ill person, please give them several minutes to answer a query. A listener must sit calmly and without interruption. Just give the person time to formulate the thought, find the right words, put the words into the right order, and then speak. I haven’t had one of those days yet. My “bad” days are pausing mid-sentence, using the wrong word, or just becoming so overwhelmed that I get dizzy and my brain feels fried. Sometimes I actually think I can smell the frying of wires because of the overloaded neurotransmissions J

In future blogs I will give pointers for how a caregiver can help if company unexpectantly drops in or the Lyme patient needs to endure a waiting room in the hospital. There are some supplements and mindful things that help. But try to keep company and outings to the minimal, and in some cases you must protect your patient from well-meaning “drop in” visits by posting a sign out front saying, “Please don’t ring doorbell” and kindly ask friends and relatives to stay away. You can go visit them but don’t pressure the Lyme patient to do so.

So Lyme makes a person antisocial, but not in the normal sense. It is a survival mechanism. Please don’t push us to do things, or remind us of social obligations. I must say nothing causes me to cringe more than thinking of holidays, parties, festivals and reunions. Take the noise and times it by ten. Take the sensations, either a stuffy room or cold weather, and multiply it. Take the few simultaneous conversations that occur around the holiday dinner table, and throw in about ten more, with heightened volume. It makes me feel like I am looking through a kaleidoscope whilst spinning on a merry-go-round with carnival noises in the background.

If I had read this a few years ago as a somewhat healthy person, I would think “how depressing,” and by “normal” standards I suppose it is. But I am not depressed.  In fact I am quite content, happy even. Lyme changes how a person thinks and feels. We no longer crave the attention from facebook status updates or feel like we are missing out on events. Our experience provides new ways of thinking and new interests. We become quite strong in many ways, despite our physical bodies betraying us. I know my limits and respect them. And what is more important, accept them and find ways to enjoy life.

"We become quite strong in many ways, despite our physical bodies betraying us. I know my limits and respect them. And what is more important, accept them and find ways to enjoy life."

The best advice for dealing with a Lymie friend or relative is to give them the control. If it is a “good” day visit one at a time and leave as soon as the person gets glassy eyed or struggles to speak.  Speak slowly and lowly. And sometimes don’t speak at all. Just having someone around, puttering in the house or doing yard work is a way of communicating. There are lots of ways to be together and express love without actually talking.  And if we do attend a social gathering, don’t worry if we take a breather and sit in a quiet corner alone for a little while. And don’t feel like starting up a conversation or asking questions so that we feel included. My favourite part of any gathering is my ability to sit quietly and just listen in, without the pressure to speak or come up with something witty to say.

In the end, silence is indeed golden.

_________________________________________________________________

I am very grateful to Marie for sharing her blog, and look forward to what she has to post in the future.  I am fortunate to have good days alongside the bad days now; and though they vary each in their own degree, I no longer have the constant feeling of my head spinning, or the need to live crawled up inside a hole. I know I so often wrestle with who I am-- a social butterfly, extrovert, etc; and with what Lyme has done to my social skills. I am excited to feel them coming back in stages, though I still find them confusing and frustrating at times when they still aren't what they used to be. I have rarely had a moment of not feeling lonely, yet so often want to be alone; and almost always wonder, if not worry, at how that affects my relationships.   It is a battle that isn't even understood by one who has it, though I am fortunate that it can, to some degree, be explained. 

More to come! 

Blessings,

Kate

 “On my bed  I remember you;

I think of you through the watches of the night.”

Psalm 63:6

 Here, as we enter into the month of Lyme disease awareness, I am convinced more than ever of the need of it; and not because I am not getting better, but because, due to awareness, I am. Granted, this awareness was very hard to come by, and self-sought for the most part, but it is what has the ability to save lives. Please share what you know with your family and friends. It could save a life. It could prevent the quality of one from ever being compromised. Educate yourself on the facts. For those seeking information, The Canadian Lyme Foundation is a wonderful and reputable resource for this. As is the interview with Janet Smith in this documentary, made by the amazing Ruth Fréchette.

In other news: last week marked the third birthday of my little boy. I can hardly call him a baby anymore, except maybe to say, “my baby”, as he has grown up so much, becoming more capable; compassionate; intuitive; skilled; intelligent; and witty as time passes by. We held a party for him, and I had to fight against all type-A, creative, and OCD tendencies so as not to overdo it. I love party planning, and cake decorating, which made it a challenge for sure. So, we rented a play space. I did this months in advance, after completely missing out on Matt’s birthday, due to the flu of a lifetime.  I know that my health, and in turn, my mind, cannot be relied on 24/7. So, I seized a lucid moment back in February and booked the play space then, in case I didn’t get another opportunity until it was too late. If nothing else, no matter how sick I was, we had somewhere to host. The idea of cleaning up (before and after), decorating,  planning activities, preparing food, etc, etc, had me feeling so anxious just thinking about it, that I knew a party at home would not work for us this year. And since Jack gets to play with others his age so rarely, I really wanted to give him the gift of a “playdate” above all else.  My mother-in-law generously made the most unique cake “to order”; graciously allowing my input on the creative planning, and executing it perfectly.  It was by far, the most anticipated part of the celebration for Jack , who had also been planning for months-- planning on having a volcano cake for his birthday, that is! And he was not disappointed!

 

Who wouldn't love this cake?!

The week before Jack’s party I was herxing. It took all of my energy to make a comprehensive checklist, and drag myself out with a friend to get last minute items such as plastic tablecloths and forks. I would be darned if I was going to miss that party. I told myself I would be there “no matter what”; and because I know, even when I set my mind like steel that things don’t always turn out my way, I began to pray. The day came about, and while I wasn’t the help I always want to be, I was a lot more help than usual. My checklist was thorough, and I had gathered many of the items in one place, bagged and ready to go; the rest were already predetermined,  and Matt bustled around to get it all packed up.  I fully expected from day one to have to sit back in my reclining lawnchair and watch as the activity took place, and I was okay with that; so long as I got to go.

Making a wish...

 Annual events bring about a serious time of reflection for me, and this was no exception.  Surprising everyone, most especially myself, at how involved I was able to be at Jack’s party this year brought me back to last year’s “party.” It consisted of a cake, made for Jack by his daddy and godpapa. A few gifts wrapped in construction-zone themed paper, and a balloon to match. (The men really did so well in pulling together something special for Jack!) I was so ill, I slept the majority of the day away, barely able to get out of bed to pee, I was in so much pain; and so, the festivities were held in my room: song, cake, gifts, and all, with our friends standing and sitting around the bed to partake.

It only took me a few days to rest up from Jack’s party this year; and the recovery was not only faster, but less intense than I had anticipated, as well. By mid-week, the sun was shining, and I was itching to get out of the house. I have been talking about the desire to start walking a few times a week, weather and health permitting, and slow to start—just enough to get me moving again. Jack and I talk often about the things we will do when I am better, and going to the park-- just the two of us-- is high on his list. There is one that is about a 10 minute walk from our house, and as I was feeling well, I seized the opportunity, cell phone in hand (in case I couldn’t make it back home), and headed out. It was wonderful. My little boy is so grown up, and as we walked, we talked, taking in the world around us. It was like experiencing a rare miracle; I felt, and still feel, beyond blessed by it. 

On our way home, we spotted a baby jackrabbit. So small, than when it hunched up, it looked no bigger than a river rock, maybe six inches in length. From afar, it blended so well with the dead leaves that, had we not seen it moving before it noticed us and froze into position, we would have mistaken it for a smooth stone. Jack ran up to it without scaring it away, and we crouched down, a mere 3 feet away, and studied it, the three of us unmoving. It was young enough to still have his down, more akin to a baby duckling than a rabbit; though looked like it would soon fall off in the heat and be replaced with the glossy hair that covered his long ears. Jack was delighted; even more so when he found out that it was called a jackrabbit, though he did have to check first that I wasn’t “just teasing” him. I felt great—aching no more when I arrived home than when I had left, and filled to the brim with gratitude for the time with my son outdoors, alone, and together. And when I kissed him later, he still smelled of the outdoors: sunscreen and grass and the summer wind in his hair. I hope I remember that day forever. I hope I remember gratitude like that forever, and that my appreciation won’t fade as my abilities strengthen; but rather that they would grow hand-in-hand, and always stay that way.

Last night my good friend came over and helped me clean up and organize my room. It has been a task staring me in the face, all day, every day, for far too long; and when I was not paralyzed by illness, I would be over the thought of where to even start. With her help, it was manageable-- if still anxiety-inducing and overwhelming. I pushed myself too hard, but it was worth it! We worked hard, and my room-- oh, my room! I have a floor! And a dresser-top! I garbaged and recycled the growing piles of papers that had very few articles of importance woven throughout (but who would have known that before going through it all?!) while she worked to put what mattered in their rightful places. It was the best gift she could have given me: peace and beauty around me as I recover.

Today Jack and I attempted the park again. This time, we were on a Dinosaur bone/fossil hunt. We brought a pail and "digger" (a plastic hand-powered grapple/shovel type toy he got for his birthday) and we found toe "bones" and foot "bones" and even a TAIL!!  (And to think, all those people passed them by as tree branches!) At one point, I thought maybe we should head back, but questioned myself as to whether or not it was just laziness, and pushed myself to stay an extra ten minutes. A mistake on my part, and maybe I should have known better. All of a sudden I was hit with pain, and we headed home. Jack had little warning, and resisted, wanting to do this, and that, just a little longer. Who could blame him? I did not want to bring my illness with me to the park. I tried so hard to leave it at home, away from Jack's childhood and our memory making, if just for a time; but alas, I had to surrender, explaining to him Mommy didn't feel well, and had to go home right away. And while we were both disappointed, it was still a great excursion, and well-worth it—even if Jack had to tuck Mommy into bed when we got home. Every once in awhile I question myself like that: “Am I just being lazy?” or, “Maybe I could if I just tried…” And while I may be able to, it doesn’t mean it won’t have serious repercussions (of pain or fatigue or a hit to my immune system)—avoidable, if I had just listened to that voice inside of myself. The one that tells me today is not a good day to take the stairs; or the one that tells me I would be alright to spend some time out on the couch instead of in bed; or vice versa, for a million other scenarios. I have to remember that I am NOT a lazy person-- that sometimes-- I simply can’t. As much as I want to take my progress and run with it, I still have to listen to my body when it is asking for two steps back, or it will end up demanding four, instead.

All of this is good. Being present and involved in Jack’s birthday party; getting to take him to the park; being able to work hard and clean my room; and, learning that not only do I not have to defend myself and my fluctuating abilities to others; but that I don’t have to defend them to myself, either. I have good days, and I have bad days. But the bad days-- they aren’t lasting nearly as long; and the good days-- they are slowly becoming great ones. There is a light! 

Blessings always,

Kate 

 "You have made known to me the path of life; 

You will fill me with joy in Your presence,

with eternal pleasures

 at your right hand." 

Psalm 16:11

"If we hope for what we do not see, we eagerly wait for it with perseverance." 

Romans 8:25

01/04/12 Today marks our last appointment with our doctor in the United States-- ever. I was very much hoping this day with coincide with my full return to health; but sadly for many, her retirement came sooner than both of us anticipated. Matt found out first, and broke the news to me two weeks ago on our most recent trip down to see our Canadian doctor. He had just returned from working out-of-town, and was set to pack us up to hit the road the very next day. In the whirlwind of his travels, he finally got a moment to share the news with me. I’m not sure if it was the uncertainty to my impending reaction in his voice, or just plain shock at the news, but when he said, “Um, I have something to tell you. Dr. Ryser is retiring….in two weeks,” I had to ask him about six times if what he said was a joke. This couldn’t be true. It just couldn’t. Sure, she was past the age of retirement when we met her; yes, we knew this was one day, a possibility; but so abruptly, and with such little warning, I just didn’t know what to make of it. Inside, I went blank. I didn’t know what to feel, so I didn’t.

Our time down south was very different than usual as well. Health circumstances prevented us from our usual visits with friends; even going for my dressing change lacked the familiar faces I knew from last year. In spite of it all, we were well taken care of in every manner; and our hosts were as hospitable as ever, even if we didn’t get to enjoy as much of their company as usual. Regardless, it was wonderful to see our loved ones’ faces and share what time we could.

My appointment went well.  It was the first time we had a physical consult (vs. telephone appointments) since last September; and, up until the shocking news was dropped on me, I was excited to see how much change our doctor would notice in me. When we arrived, however, all I could think about was what this new change meant for me. Most of all, I wondered what it meant for my recovery, and if a full one was still possible.  

As always, our doctor was a delight. She was so pleased to see and hear of all the changes since we had visited last, and was quick to assure us that even though this news was unexpected, it didn’t have to be scary. She will continue on as my primary physician; and will be able to consult with our American doctor as needed (so long as there aren’t any names given, since she no longer holds a licence). Our doctor here has been working with and “apprenticing under” our doctor in the States for years. She is confident and intelligent, and both doctors believe her to be capable of managing my treatment from here on out.  And while I have never doubted my physicians, it is nerve wracking to suddenly lose one of them; it feels as though my safety net has been pulled out from under this tightrope I’m walking, and all I have left is God.

Some changes to my medications have been made, again; helping my body process and remove toxins in the most effective manner, so that I may have the energy to keep killing these diseases off. That means a reduced med load with one drug, and more vitamins and fluids to flush my system out. We are also in the process of trying to discover if my insomnia is still a symptom of Lyme, or if that has cleared up and it is simply habitual. This involves eliminating my lunchtime dose of Valium, (as it makes me quite tired); and adding in an OCD inhibitor, so that my mind will actually shut off at bedtime-- instead of going into overdrive and keeping me awake at all hours-- even when there is nothing to do. It also has an anti-seizure property to it, so reducing the Valium shouldn’t cause any seizures. I am also to keep my blinds open during the day (and if that isn’t enough, get a SADS lamp that turns on when I wake up) to turn my internal clock around and teach my body how to be awake during the day. I am to be getting up earlier and earlier slowly over time (and going to bed earlier and earlier, as well). The goal is to take my 12 hour wake cycle and switch it to the daytime instead of from 5 pm-5 am. So far I am finding this drug to be somewhat effective. The first few days of taking it I was so inebriated by it I couldn’t think. It was the strangest thing. Within minutes of taking it, I couldn’t focus on what I was reading or anything other than just lying down so I could sleep the feeling of confusion away. Just as with the Valium, my body is now starting to tolerate it, and the effect is lessened. I am able to go to bed earlier, but my brain is not as muddled, and it takes longer to fall asleep.  My hours are improving more than I had hoped in this short amount of time, but I am still encountering one major symptom: brain fog. It only seems to bother me during the day. I am more forgetful, less mentally alert, unable to focus, etc. It is why I actually don't mind keeping such odd hours—I feel like “myself” during these times. I can write; crochet; plan; decide. All things I have difficulty with during the day still. I really hope and pray that if we can get my sleep cycle back to “normal”, my brain will follow suit. It would be a shame to sleep the best part of my mind away.

I had a few questions regarding all of the changes, of course. I wanted to know what this doctor thought of my prognosis now that it was just the two of us. She was just as positive as ever, expressing how much improvement she observed since she saw me last. I was told, “I don’t know what the ‘old’ Kate was like, but the Kate I met; the one who came into my office in sunglasses, curled up into a ball, unable to think and speak for herself—she doesn’t exist anymore. I don’t think you were aware of just how sick you were; or how far you have come. Did you realise you just conducted this entire appointment by yourself? Sure, you consulted your notes at first, but any patient with a long list has to do that!” We spoke of other improvements: my anxiety lessening, for one.  And at the end of it all, she said she still fully expected me to make a complete recovery, emphasising just how well this has gone. I asked for a guesstimate on how much longer my port would be in use, as that the question I get so often (after, ‘how long until you’re better?’) Not being able to say for certain, she estimated I would be doing IV’s for another year or so. Not always antibiotics, however, but accessing it for fluids after we are done with IV meds.

During the course of the appointment I felt less like my usual self with her, and more how I was with my former doctor; challenging, disputing, and overall advocating.  It will take some time to get used to, I think. I wanted to be sure; now that we didn’t have another doctor to bounce ideas off of, I needed to know that this was, in fact, the very best plan. I know that she has my best interests at heart. I am grateful and impressed that she has hired another doctor so she can focus her practise on the patients that need her expertise. I guess it just comes down to change. Change is scary. Changing doctors (or losing one) is scary. Not overwhelmingly so, but enough to make me question what God has in store for me now, and if this was part of His plan all along.

 In the midst of my final phone call today, wherein the doctor rushed to tell me of other available physicians in the States if necessary; of her confidence in the doctor I have here; and the privilege she felt to be our doctor and a part of our lives, she gave us room for one more question.  Matt and I agreed beforehand on what it would be, should we get the opportunity for even one (we knew she had tons of patients to contact in very little time). 

“How will we know if or when it is okay to have another baby?” I asked. “Obviously we can test to see if I am better, but Lyme can go into hiding; and a trauma, like childbirth, has the potential to cause a relapse. How will we know that won’t happen?” 

Her answer was this: we test. If everything shows I am healthy, we can go ahead and decide to have a baby. Nobody ever knows if their child will be healthy; but with the young women she has seen in cases like mine, they have gone on to have healthy pregnancies, babies, and beyond. Because I will be undergoing such extensive testing, I may even have a better chance at preventing other illnesses as well, as the tests taken aren’t part of the routine testing here. And, should there be any question or concern about mother or child after a baby is born, we test again. We know what we are dealing with, and we know how to treat it.  And while this still seems a ways off before we can even consider something like this again, it gives me hope.

Last week, our parish priest came by to visit and give me the sacraments. He asked how I was doing (emotionally), and to be honest, I felt like crying. I was low on hope that day; not knowing what this all meant, or what was in store. 

I just told him that, “Most of the time I am okay. I have gotten to this good place with God where, while I want to get better, I am happy to do His will if it means staying right where I am”.

 “NO!” he exclaimed (much to my surprise). “You must not give up hope. Hope is so important for healing. Trust that God will make you well, and He will.” 

I told him that Matt had rented me a wheelchair so that, for the first time in almost a year, I could attend mass this Easter (providing that I was feeling well). 

As he left, I said, “I hope to see you Sunday!” 

He replied, “No. You WILL see me Sunday!” 

 God has been running this theme of hope in my life for a couple of weeks now. He always knows what I need, even when I don’t.

I attended dinner with my in-laws on Saturday, and it was so great to see Jack and his cousins play, and enjoy hunting around Grandma and Grandpa’s house for chocolate eggs.  Jack has such an eye for detail, he noticed half of the candies before it was even mentioned a hunt was on! Sunday morning I got up in time for breakfast with my boys, and to Jack’s utter delight, prepared to go to church as a family. We parked my wheelchair at the back where there was a few feet of room behind the pews, and a place for Matt to sit. When Jack wasn’t on my lap, he was blissfully dancing to the music (which turned into excitedly running in circles at some point, but hey, I won’t question his interpretative creativity). It was such a joy to see! And if that wasn’t busy enough, I even managed to attend Easter dinner at my parents’ house, though just by the skin of my teeth. In retrospect, it was far too much for one weekend. But sometimes you just don’t know until you try.

I don’t know what the future holds, but I like to see it this way: cleaning my kitchen while I watch my son play outside; taking him to the park, and coming home to make my family dinner. Babysitting my godsons; and being there for family and friends when they are in a bind. Driving again. Going grocery shopping. Attending parties, and hosting events. Going on a second honeymoon with my husband; and experiencing life together-- outside of our home. Attending mass as often as I'd like. Having adventures as a family. Finding out that I am pregnant, and watching my belly, and my family, grow; watching Jack become the world’s greatest big brother. The list goes on and on, really, if I let myself hope. I just need to let myself hope.

Blessings always,

Kate

“The steadfast love of the Lord never ceases,
    his mercies never come to an end;

they are new every morning;
    great is thy faithfulness.
 ‘The Lord is my portion,’ says my soul,
    ‘therefore I will hope in him’”

Lamentations 3:22-24

“Let all that I am wait quietly before God,
    for my hope is in him.

He alone is my rock and my salvation,
    my fortress where I will not be shaken.”

 Psalm 63:5-6